Ann's Fight

When real life intrudes

2012-01-28T10:13:00.001-06:00

I've just finished the second week of my last semester and must now face a glaring truth: In 17 weeks, if all goes well I will graduate. This event has been 8 years in the making when you include the little cancer hiatus I took from 2007-2010. In 17 weeks if I manage to survive the last 3 classes I will ever have to take as a construction management undergrad, I will be done.

At the moment, I'm currently immersed in the nightmare of every type-A introvert that's ever traipsed through the halls of any learning institution. I'm finally taking the 1 class I've been putting off since my first day of college. Intro to communication studies. There is much emoting expected and the emphasis on class participation is great. I will survive.

There is another class that I must take in order to graduate and until I actually read the syllabus, it didn't occur to me that my grade would depend so heavily on the participation of other students. The class is a semester long group project. I did have the luxury of choosing my group, but that was of little comfort considering I only recognized 2 or 3 students in the class and they were of the variety that I specifically did not want to work with. I tend to remain in a constant state of stress when relying on others for a grade.

Since I can be extremely anal retentive about my grades, my stress level is hovering somewhere in space. I'll get through it. The project will get done. I will graduate.

A side effect of my constant state of stress is a constant state of itchiness. Stress=GvHD for me. Both of my arms are constantly covered in a rash from my wrists to my shoulders. My cheeks are constantly rosy and my scalp is flaking big time. I know that the rashes and itchiness would subside if I could relax. I'm working on it. This is nothing new for me and I've been down this road before. Remember last semester when I thought I was flunking? I finished the semester with a 3.0. I will survive.

The last bit of stress in my life centers upon finding a job. That will have to wait until the next blog post.

3 little numbers

2012-01-04T14:19:00.003-06:00

I've recently come to realize that sets of 3 little numbers hold a great deal of power in my life. 3 little numbers when combined in the right order can occasionally fill me with joy, dread, irritation, or some combination of the three emotions.

985 for my mother.

314 for one of my oldest friends.

408 for my uncle and aunts living too far away.

713 for the place that has owned most of my time over the last 5 years.

At one time, seeing 713 flash across my cell phone screen used to fill me with annoyance and dread. During the early days of learning to live with the snarling bête noir that is cancer, 713 meant another appointment, another hospital stay, more strange news about my condition, another day spent away from home. The sight of 713 conditioned me so that my heart beat a little faster, my hands became less sure, and I stopped whatever I was doing at the time to scramble for my phone.

After 5 years, endless chemotherapy, and 2 transplants, I've come to realize that 713 doesn't have to be the growling beast gnashing its teeth at the end of a too short leash. This past Monday, 713 became routine.

A physician's assistant covering for my regular PA at MD Anderson called to let me know that some of the results from my bone marrow aspiration were available. I don't have cancer. There's no molecular evidence of leukemia. In blood cancer speak: no minimal residual disease.

The flow cytometry is still pending and results won't be in for some time. The PA reassured me that my transplant doctor wasn't concerned since my numbers were all so normal. Normal.

I suppose you can guess how I feel about 713 these days since it is now Wednesday and I've been sitting on these results since Monday afternoon. No anxiety and no accelerated heartbeat. 713 now means business as usual or a friend on the other end of the line.

MDA Recap

2011-12-18T16:23:00.001-06:00

I've been trying to write this post since last Thursday, but life and a mild case of writer's block have been conspiring against me. My most recent visit to MD Anderson involved a routine checkup with my transplant doctor and a bone marrow aspiration to be sure that there's no evidence of residual disease. 6 months has elapsed since my marrow has been checked for any lurking leukemia cells and so I was due.

The procedure went off without a hitch, my blood work was normal, and my transplant doctor was happy to send me on my way. As a special treat, I was able to meet with 2 of my twitter friends for lunch. Jody and Jennifer deserve a commendation for infinite patience. My clinic was running 2 hours behind and they had to wait on me for lunch. After a comedy of errors in which I kept pushing the schedule back via text messages, and poor Jody lost her keys, and sweet Jennifer was stuck at the restaurant holding the table during lunch time rush hour all by herself.

I'm afraid I'll have to recap the adventure in another post since my brain is shutting down and this seems to be as good as it's going to get. Before I completely forget, I managed a 3.0 for the semester. I don't know how it happened, but I'm happy to have it.

Here are the numbers for my blood work:

RBC: 4.01 M/UL (4.0-5.50)

WBC: 7.5 K/UL (4.0-11.0)

Hemoglobin: 12.3 G/DL (12.0-16.0)

Platelets: 387 K/UL (140-440)

Absolute neutrophil count: 4.94 K/UL (1.70-7.30)

My liver enzymes are absolutely middle of the road normal

Shuffling along

2011-12-11T10:22:00.001-06:00

I took my last final of the semester this past Thursday and have spent the last 3 days blissfully doing nothing more intellectual than reading some pulp fiction for a book club I've recently joined. The club was started by a friend from high school and its members all live in different states. We communicate via the internet and I must admit that I've been enjoying their pithiness immensely.

Aside from continued pain from the car accident, my health is good. I have a checkup in Houston on Wednesday which will include another bone marrow biopsy. It's routine, so no worries. Monday, I'm going to see my internist about the issues that I continue to have as a result of the car accident.

After a week of radio silence from the claims adjustor, I started leaving messages for him. After 2 weeks of staring at my smashed SUV taking up space in the driveway, I vented about the insurance company in question on twitter. Their twitter representative responded with a phone number and a request that I call. I'm glad I did. She worked some magic and my claims adjustor called me the next day. My car went in for repairs 24 hours later. I'm still waiting for reimbursement from them for the cost of having my car towed from the site of the accident back to my house. It's been almost a month and still nothing.

I'll post the results of the MDA visit Thursday or Friday.

DNA wins

2011-11-22T08:26:00.001-06:00

After a weekend of dealing with constant discomfort and pain, I decided to give my new internal medicine doctor a call. There is a grinding sensation in my spine and neck. I've had a low level headache since Thursday, the day after the wreck. I've been taking things easy and popping muscle relaxers as directed. Things are not improving.

I was able to get in to see Dr. C.'s nurse practitioner after classes Monday. It just so happens that they've been trying to reach me since Friday. The woman working the front desk didn't update my personal info the last time I was there and so they've been calling my old number.

My cholesterol levels are ridiculously high. I eat well and am moderately active. I have a relatively healthy lifestyle all things considered, and yet my cholesterol level weighed in at 263 mg/dL. The normal range is between 140-200 mg/dL. My near-vegetarian mother has struggled with her cholesterol since I was a child. I come by the problem honestly, and so I can't really complain. Dr. C. has started me on a prescription in the hope that my wayward lipid level can be brought back into line. Just as an aside, my good cholesterol measured at 58 mg/dL, which is higher than average and a saving grace.

As for my spine and neck, Dr. C. prescribed an anti-inflammatory drug in addition to the muscle relaxer. If things haven't improved after two weeks, I have to go back to be reassessed. The headache is a constant bother and makes concentrating in class a terrible chore. I'm hopeful that it resolves soon.

Applied physics

2011-11-20T13:51:00.001-06:00

On Wednesday, November 16, I was in a 2 car wreck. The other driver was making a left turn into oncoming traffic without the right of way. My SUV smashed into his front passenger side door. He was at fault and admitted as much.

My car is inoperable. I am in near constant pain. I've seen a doctor who prescribed muscle relaxers. I prefer to avoid painkillers since they're either toxic to my liver or cause me to vomit, which makes everything worse. I can't get into more detail since the case is far from being resolved.

I'll write more about the accident when I'm free to do so.

In the meantime, I hope you all have a very wonderful Thanksgiving. May there be too much of everything that is pleasurable.

A little GvHD to go with my chemo brain

2011-11-03T09:32:00.000-06:00

It's been five and a half weeks since I last saw my transplant doctor and the rest of the team of specialists who work so hard to ensure I maintain a reasonable quality of life. I've been off of bactrim, valtrex, and v-fend since that last visit and I can feel the difference. These three drugs were taken as a precautionary measure against pneumonia, viruses, and fungal infections. I've managed to avoid catching anything so far, and when you consider the fact that I spend a large part of my day sitting amongst a menagerie of college students, most of whom are just barely out of their teens, that is quite a feat in itself.

The real reason for brining this up is related to another drug that I still take. Tacrolimus is an immunosuppressant drug that keeps my transplanted immune system in line. The anti-fungal I was taking also helped boost my ability to metabolize the tacrolimus, which meant that 1mg was enough to keep my immune system under control, and thus GvHD was a very minor nuisance. I still only take 1mg of tacrolimus and my immune system has started acting like a petulant baby left with a sitter.

The GvHD affecting my skin, mouth, scalp, and eyes has flared up ever so slightly. My skin feels like sandpaper and no amount of moisturizer really helps. I get small rashes, mostly on the lower part of my face. They're easily controlled with cortisone cream and are more annoying than threatening. I've had one mouth sore to date and that went away after a few applications of a steroid mouth rinse. My eyes are a little drier than usual, but honestly, they've been dry since transplant number one. I continue to use restasis drops and that keeps the problem under control.

As for my scalp, well, it's just gross. I constantly look like I'm smuggling artificial snow in my dark locks. My scalp itches sporadically and ferociously. I use a dandruff shampoo that smells like burning tar as well as a prescription topical steroid solution that I'm only supposed to apply every two to three days. I think the new normal for me includes an abundance of flakes of dead skin peppering my dark hair. It definitely beats having cancer, but really?

I've also been taking the new hormone replacement therapy for five and a half weeks. I do not love it. I was taking Prempro, which left me feeling even keeled and emotionally stable, before the whole fertility mystery. Now I'm taking Seasonale and I constantly feel like I have PMS. Poor Chris has been a trooper while I've subjected him to hormonal whiplash. I'm starting to get a handle on it, so I'll stick it out for another month or two in the hope that the compulsive bitchiness disappears. If it doesn't resolve, I'll ask to be put on something else.

There's a month left to my current semester of school and to put things bluntly, my scholastic performance to date has not been stellar. I'm stumbling badly in an estimating class and the very best I can hope for is a C. Truth be told, I will probably repeat the class next semester. As for the other two classes I'm taking, I have Bs in both. I'm a bit of a freak about my grades, so you'll have to excuse my neurosis if a C sounds like a good deal to you. I spend more time than most working on the material and trying to understand the subjects. Chemo brain makes life difficult and so I have to work ten times as hard to do half as well as most people. I no longer do tests well and time constraints only make things worse. In real world applications, I can bore you to tears with what I've learned. Give me a list of questions and an hour to answer them all and I am suddenly struck dumb.

I'll get through it. My professors are great and have been very understanding. One professor who knew me from classes taken before the transplant has been especially fantastic about everything. He makes an extra effort to be sure that I understand how to work things out during class. I've spent quite a few mornings in this professor's office getting extra help on the subject. Chris has been helping me nearly every day with the subject outside of class. You'd think I'd have an A given the amount of effort I've been putting in on top of the extra help I've been getting. It's the class in which I am doing the worst.

37

2011-10-27T08:01:00.001-06:00

36 has come and gone and with 37's arrival Wednesday I realized that things are getting easier. I don't mean that I've unlocked the secret to mastering new things, but that the simple act of being now fits better than it ever did in years past.

I'm also learning that the middle-aged body is a mercilessly unforgiving thing. I gave myself a free pass from the diet yesterday and ate those things that I normally eschew. I managed to get as far as a lunch of nothing but those tiny powdered donuts that come in the glossy white bag. I had 6 of them and started to feel sick like I'd had too much of a good thing. After dinner, I had a piece of cake purchased from my local super market. You know the variety, the sheet cake covered in the kind of icing that never seems to go bad because it's made of entirely synthetic food-stuffs. Truth be known, it's one of my most favorite things. I rarely have it because I have no self control. After finishing a single slice, I asked Chris if he wouldn't mind bringing the rest of the cake to work just to get it out of the house.

Today, I just want to eat oatmeal and salad.

Biopsy results

2011-10-11T07:21:00.003-06:00

The biopsy results from my last visit to the dermatologist at MD Anderson have come in and it was nothing to be concerned about. Just a little cyst. Nothing predatory or cancer-like.

I am swamped with midterms, so things will be quiet on the blog until after 10/20.

Sharing the mystery

2011-10-02T10:02:00.000-06:00

I was in Houston for 2 days last week and have been loathe to write about it. Before you become alarmed, it's not for the reasons that might have immediately occurred to you. In fact, my transplant doctor pronounced me perfectly normal. My blood work was as close to normal as can be expected for a two time transplant survivor. My liver is behaving.

Dr. K. took me off of the anti-fungal, anti-viral, and the antibiotic I took 3 times a week to help guard me against possibly developing pneumonia. These 3 medications were a sort of insurance policy while I took an immunosuppressant. I still take tacrolimus (immunosuppressant). Dr. K. wants to wean me off of everything.

The anti-viral medication that I was on magnified my body's ability to absorb tacrolimus. This means that now that I'm off of it, the same 1 mg dose of tacrolimus that I still take isn't as effective. After a week of lower levels, I'm starting to feel the effects of an immune system coming off the leash. My skin constantly feels like ants are trying to escape from the inside. There's a constant stinging itch that moves around. Patches of skin have become extremely dry and flaky. My face looks as though I've allowed a thin layer of white glue to dry upon it. My cheeks and forehead are crinkly and puckered. The skin just under my eyes is peeling. Nothing helps. It itches and burns.

My latest pulmonary function test showed that I've had an improvement of 1% over the results from 6 months ago. GvHD of the lungs is very slow to heal. It's likely that I will be recovering from it for years to come. I'm at a little over 70% of lung capacity. Heat and high humidity make breathing difficult. Smoke and air pollutants leave me a little breathless. To give you a better reference point, I occasionally pass within a hundred yards of a small food service outpost on my way to class. On the days that they serve barbecue and smoked sausage I start to wheeze. That small bit of smoke in the air gives me hell. Try to imagine walking behind a smoker.

I saw my dermatologist while I was at MDA because I was worried about a small plaque of skin that had popped up on my left forearm. It wasn't like any GvHD that I'd ever experienced. It was a small, flat raised dot of skin. Extended use of immunosuppressants increases the incidence of skin cancer. It's one of the things my team constantly checks me for. I was concerned. As it happens, I was worried for no good reason.

It was a wart. I haven't had a wart since I was a child. Dr. H. froze it off and that was the end of it. She also took a skin punch biopsy from my right buttock. I've been walking around with a stitch on my ass. I don't expect the results to amount to much of anything. Dr. H. didn't think I had anything to worry about. I should get the results in another week.

And now I'll talk about the thing that's made me loathe to do much of anything for the last week. I don't know if many of you will remember the great mystery diagnosis I was l being so secretive about earlier in the year.

The THING.

I've been seeing a reproductive endocrinologist as MDA for the last 2 years. He put me on hormone replacement therapy because my natural hormone levels indicated that I was fully menopausal. It was expected. Only 1-3% of transplant patients are genuinely able to retain fertility. After the first transplant, it looked like I would be one of the lucky few. I was able to menstruate, etc.

I wasn't so lucky after the second transplant. If I'm going to be absolutely honest about it, the fact broke my heart. I mourned the fact quietly and came to terms with it. Chris and I started investigating options. They all cost more than most entry-level luxury cars.

I went on with my life. I went back to school. I set the thought of kids aside.

In February of this year a funny thing happened. I started menstruating again after 2 years of nothing. I talked to my local oncologist who told me that it happens. I talked to my transplant doctor and she put in orders for me to see a specialist at MDA. A month passed, and then another. The periods got longer each time. In May, the bleeding became continuous. I became alarmed and pushed my transplant team on it. They got me in to see the gynecologist that works with transplant patients.

She wondered why I was on hormone replacement therapy. She told me what was happening wasn't unusual. She'd seen it happen before. She suspected that my reproductive organs had been quietly repairing themselves after so much chemotherapy. She suspected that I was still fertile.

I didn't want to say anything. I didn't want to hope. I didn't want other people to get excited about the possibility, because I didn't want to believe it. To believe that this could be possible opened me up to the possibility of having to grieve all over again. I'd done that and I refused to go through it again. And so I refused to believe it.

That didn't stop some small part of me from hoping.

Dr. R. ran tests. I had a vaginal ultrasound to check out the equipment so to speak. My blood work came back as inconclusive. Dr. R. told me to stop taking hormones. She scheduled me to return to MDA 2 weeks later for more tests. They were also inconclusive. Dr. R. scheduled more tests to take place a few months later.

I started to hope a little harder. It became harder to keep myself from believing that maybe she was right.

I saw Dr. R. last week for those tests. They were conclusive. I am not fertile. Technically, you have to go 1 year without menstruating before you can officially be declared menopausal. Dr. R. put me on a different regimen of hormone replacement therapy. It's a lower dose and different combination than the one I was previously on.

It was the original HRT that had caused the menstruation.

Now I'm working on accepting infertility all over again. It's harder this time. I don't want to talk about it. I want to hide under the covers and cry my eyes out. I didn't want to do much of anything last week. I'll get over it. I know I will. Thankfully, I have sweet friends like Diana who understands the heartache. She's held my hand through emails and Twitter. I have very dear old friends like Heather who makes a point of calling me multiple times during the week. She talks to me about the little things that happen on any given day and she listens to me complaining about school. They don't push, they don't bring it up, and they don't tell me what I need to do to get over it. They let me bring it up when I need to and they listen without pushing advice or opinions on me unless I ask for it. I am grateful.

I don't think that I'll write about this topic again. I won't close the door on the possibility, but right now I don't believe that I have any new insight to offer. If you're a transplant patient or survivor in a similar predicament and have questions, feel free to email me. I'll try to answer them as best I can.

A heaping scoop of normal

2011-09-10T09:52:00.002-06:00

It finally happened.

I am sick. After roaring through 2 semesters surrounded by students unscathed, I have finally succumbed.

This past Wednesday, a classmate who sits next to me in 2 consecutive classes came to school, plopped down next to me and proceeded to cough her head off. I held my breath. I averted my face. I emptied my little bottle of Purell. I developed a sore throat on Friday.

I saw my local oncologist's advance practices nurse after class. Her first inclination was to recommend a wait-and-see strategy. If things got worse, then I'd get antibiotics. She was very sweet, and very knowledgeable, but she wasn't my doctor's regular APN nurse. She was filling in and so she wasn't very familiar with my situation. I give her an immense amount of credit for knowing her stuff regarding transplant patients, though. She sees 2 long-time transplant survivors while assisting her regular doctor.

She knew about my GvHD of the skin, scalp, eyes, and mouth. She didn't know about the GvHD in my lungs. When I mentioned it after the wait-and-see diagnosis, she was surprised. She told me that I sounded too good. She's dealt with GvHD of the lungs and so she knows. Chris told her that I tended to be special when it comes to the presentation of special circumstances. I don't present normally. She conferred with my doctor and the decision was made to treat me aggressively out of an abundance of caution. They didn't want me in the ER over the weekend. I didn't want an infection settling in my lungs. My lung capacity is still diminished and the thought of trying to breathe through a chest infection made me twitch.

I started Z-pak yesterday. My throat is a little more sore today, but I don't feel any worse. Z-pak is a beautiful thing. I have several projects due Monday, Tuesday, and Wednesday, so I'll try to work on them between naps.

Before I forget, my doctor did order labs, so here are the results:

white blood cells: 10.6 k/ul (4.5-10.8)

red blood cells 4.03 M/UL (4.2-5.4)

hemoglobin: 12.8 g/dl (12-16)

platelets: 414 k/ul (150-350) I am a platelet making machine. I always tend to run on the high end, so no need for alarm.

absolute neutrophil count: 7.9 k/ul (1.5-10)

For all intents and purposes, my counts are perfectly normal for me.

Three years on

2011-09-07T12:46:00.002-06:00

Three years ago, a complete stranger donated bone marrow to save my life. We were not a perfect match, but close enough. This complete stranger was the only person out of thousands of people on all of the registries who could, through the selfless act of donating, save my life. I'm one of the lucky ones. There are so many in need of a bone marrow transplant who have no viable matches.

A year later, I learned this stranger's name: Dana. A short while later, I received an email from her. I was surprised to learn that we are the same age.

Today, I marvel that I am able to sit in my home and enjoy most of the same activities I loved before the dark days of diagnosis and treatment. The small number of friends that I've made at school have no idea that I spent the better parts of 2007-2009 bald due to chemo. Today, I get to be myself. No awkward silences or difficult questions.

Today, I get to marvel at the novelty of being normal thanks to a beautifully selfless soul who took the time to register as a bone marrow donor.

Today, I get to thank her one more time.

Thank you, Dana.

Back to School

2011-08-25T07:26:00.002-06:00

Classes resumed on Monday and so I am that much closer to a degree. Financial aid is still up in the air and the gremlins that generate that entity's electronic correspondence are doing their best to bring on a nervous breakdown. GvHD of the skin and scalp have ramped up since I'm regularly in the sun on a daily basis now. As for everything else, there's been little change.

A little GvHD

2011-08-13T10:13:00.002-06:00

Yesterday, I noticed that my face was covered in a faint GvHD rash. It happens when I've been exposed to too much sun or heat most of the time. I don't think I can blame the sun for this latest episode, though.

The rash quietly emerged about an hour after I got off the phone with a harried counselor who worked in the financial aid department. Classes start in little more than a week and so these poor counselors are under attack by frantic individuals wanting to know where their money is. I realized this before I picked the phone up. I didn't want to make the call, but the tiny OCD bureaucrat that hides in a tiny compartment of my brain was insisting that I do due diligence. It's been a week since I sent in my appeals package. I wanted to be sure that the powers that be had received it.

I spent 43 minutes on hold waiting to speak to a human being. I was told that my case was still being processed and that the office was receiving such an enormous volume of correspondence that there was no way that the counselor with whom I was speaking could tell me if my paperwork had been received. Instead of insisting that she drop everything and spend the rest of her morning finalizing my case, I thanked her for her time and let her get back to work.

And I told myself that I wasn't stressed and got back to doing whatever it is I do on any given day.

Then the rash made its debut. I applied prescribed unguents and thought no more of it.

This morning, I awoke to a screaming rash on the entirety of my face that reaches back onto my scalp. It stops somewhere behind my crown and on a scale of 1 to 10 it is a constant 5 as far as itchiness is concerned.

Since I know stress over my financial aid situation has been the genesis of this latest round of skin GvHD, I plan on doing incredibly mindless things this weekend in an effort to counteract it. I have topical prescriptions that will help with the rashes and itching, but until I chill out, they won't go away entirely. I've been down this road a few times. If you need me, I'll be on the couch surrounded by diet-blowing snacks. I might even share if you ask nicely.

Norming

2011-08-08T07:09:00.003-06:00

Little by little, I'm learning that I'm no longer programmed to deal with the regular stresses that confront people every day. Throw some medical drama my way and I flip over to automatic and cruise on through it. I've been handling extraordinary medical situations for too long.

The only drama I'm currently facing is of the generic variety. My financial aid package is in limbo.

I have seven classes left to take at LSU. Five of them are to complete my degree in Construction Management. Two of the classes round out a minor in Business. I'm currently working on two of theses courses via the distance learning program.

What I'm hoping to remember as my last fall semester begins in less than 2 weeks and my status is in a bit of limbo since my financial aid package is under review. Last year, I wasn't able to complete enough hours to satisfy aid requirements. I was only able to complete six hours each semester thanks to GvHD of the liver and lungs. If I'm going to be honest about it, I shouldn't have been able to finish that many. Sheer stubbornness on my part and the understanding of some amazing professors got me through.

And so now I wait. I put my appeal package in the mail yesterday. I will resist the urge to call the poor beleagured employees of the department of financial aid every twenty minutes. I will continue to work on my independent study lessons. I will systematically chew off every one of my finger nails. I will stress out over this very mundane thing that I know will be resolved and all the while, I will not be thinking about cancer. I suppose it's the small victories that matter most.

Living my life

2011-07-31T08:21:00.002-06:00

It's been too long since my last post, but I don't have anything to really share. I did see my local hematologist last week and my blood work was blissfully normal. Every single number, save for the red blood cells and platelets which were so very close to normal--I'm talking fractions here, that Dr. B. considers them normal.

Chris continues to be treated for medical issues arising from June's car accident.

I'm trying to get financial aid straightened out for the upcoming school year. I wasn't able to take enough hours last year to automatically qualify, so I must file an appeal and acquire documentation to satisfy the department as to the reason for my lighter than usual load. I think having a liver the size of a newborn and lungs full of infiltrates might qualify.

I continue to work on my independent study classes and keeping a low profile.

Excitement for the week

2011-07-15T08:07:00.002-06:00

This past Monday, I received a paper copy of my schedule of upcoming appointments at MD Anderson. I'll be honest, I usually only skim these letters. I've become spoiled by the internet and prefer to check for my appointments through MDA's website. This time, I paid attention.

I was scheduled for a bone marrow biopsy in September. I'd just had a biopsy in June following March's strange findings. At my last visit in June, Dr. K. told me that I wouldn't need to be back until December. Having done this dance for the last 4 1/2 years, I have learned that something like this generally means that the results of your last test were questionable. It was the first thing that came to mind and it left me feeling a little disturbed.

I didn't feel like I had cancer. I certainly didn't feel like I had some strange mutated chromosome lurking deep in my marrow. I did have a t(4;11) translocation when diagnosed with leukemia. I know you can't feel something so very minuscule on its own, but you can feel the cascade of symptoms it accompanies, like leukemia.

I felt well. I felt like myself. I pushed the kernel of worry into the bag I keep next to the box in my mind that holds the really scary stuff. I sent an email to my transplant nurse asking about having a bone marrow biopsy so soon after my last one. I waited.

Cathy forwarded my message to Dr. K. I got the news yesterday: the cytogenetics from June were clean. The t(7;11) translocation found in March's biopsy was an artifact. I don't have cancer. I celebrated by going to the grocery store, because after so much time spent in isolation, feeling like a creature from another world, that's what you do. It made me happy to do something so fundamentally normal. Buying 3 types of ice cream didn't hurt either.

The other half

2011-07-09T08:52:00.006-06:00

The last month that I was on steroids, my total weight gain ballooned to 30 pounds. I was still hitting the treadmill for 80-100 minutes a day, 5 days a week and watched every single thing I ate. I can only assume that my body's hyper-sensitivity to steroids was partly to blame. My pokey metabolism is also culpable.

I stopped taking steroids in March and for a month, I tried really hard to start losing the weight. I consistently worked on the treadmill and even started substituting low calorie, high protein shakes for lunch. To show his support, Chris even started drinking the not so yummy shakes. I managed to lose 2 pounds. He lost 8. My local oncologist assured me that once the weight started coming off, my weight loss would probably accelerate.

It didn't, so I decided to sign up for a weight loss program. I'd been dithering about doing it for weeks, but after talking to my sweet friend Wendy who was doing the program, I signed up. I'm not going to name the program since they get enough promotion, but will tell you that it's the one where you count points. Yes, that one.

I lost 3 pounds the first week. It's been 7 weeks now and my total weight loss, including the hard won 2 that I lost on my own is 14 pounds. The diet is really easy to follow and there's nothing that I can't eat so long as I balance my points. Chris is losing weight as well since he essentially eats what I've prepared.

I've been tinkering with some recipes and have come up with 2 that I'm happy to share. The first is for mac and cheese and was inspired by The Pioneer Woman's fancy macaroni. Her's is to-die-for delicious and laden with butter.

Here's my take:

Ingredients:

2 Cups uncooked wheat macaroni elbows

2 TBS butter

2 TBS all-purpose flour

1 1/4 Cups skim milk

1 egg yolk

1/2 tsp kosher salt

1/2 tsp ground black pepper

1/4 tsp onion powder

1/8 tsp nutmeg

4 ounces Kraft 2% milk shredded cheddar cheese

1/2 Cup 1% milk cottage cheese

3 strips bacon, cooked and coarsely chopped

Preheat the oven to 350 degrees.

Cook the macaroni according to package directions.

While the pasta is cooking, melt the butter in a saucepan over medium heat. Once the butter has melted, whisk in the flour until it's completely incorporated. Pour in the milk, whisking until thickened, about 3 to 5 minutes.

In a separate bowl, lightly beat the yolk. While whisking constantly, slowly drizzle some of the thickened milk mixture, about 1/4 cup, into the yolk. Once totally incorporated, add this back into the saucepan and whisk until fully blended. Stir in the salt, pepper, nutmeg, and onion powder.

Add the cheddar and cottage cheese to the saucepan and stir until the cheese has blended, about 5 to 10 minutes. For whatever perverse reason, the cottage cheese takes the longest time to break down. Be patient, it will happen. Once the sauce is smooth, stir in the chopped bacon.

Stir in the cooked and drained pasta, then pour the entire mixture into a small baking dish--I use an 8 x 10, and smooth out the top. Bake for 15 to 20 minutes. The recipe makes 6 to 8 servings.

As the recipe is written and divided into 6 portions, each portion is 8 points on the diet that shall not be named. It's a big serving and could easily be cut down. The recipe is really flexible and can be tailored to suit your tastes. Change the seasonings or the types of cheese. If you prefer stove-top mac and cheese, leave the egg yolk out of the recipe and skip the oven. The bacon adds a nice smokey, salty element. The cottage cheese makes the sauce incredibly creamy. It doesn't taste like diet food and passes the Chris test.

The second recipe satisfies my sweet tooth and gives me something to do with over-ripe bananas.

Banana muffins:

Ingredients:

3-4 really ripe bananas, mashed

1 egg

1/3 Cup butter, melted

1 1/2 Cup all-purpose flour

1/4 Cup plus 2 TBS packed brown sugar

1/4 Cup plus 2 TBS splenda for baking

1 tsp baking powder

1 tsp baking soda

1/2 tsp salt

dash of cinnamon

Preheat the oven to 375 degrees. Lightly grease a 12 muffin pan or line with cupcake papers.

In a large bowl, beat together the banana, brown sugar, splenda, egg, and melted butter until thoroughly combined, about 2 minutes.

Add the flour, salt, cinnamon, baking powder, and baking soda and mix until just combined. Don't over mix it or your muffins will be dense and tough.

Spoon the batter into the muffin pan and bake for 18 to 20 minutes. One muffin equals 4 points on the diet.

*I've tried this batter for banana bread. It doesn't quite work in loaf form.

Preliminary results

2011-06-27T06:35:00.002-06:00

The preliminary results of my bone marrow biopsy from 6/20 showed no leukemia. I won't know anything about the flow cytometry for a few more weeks. As for the cytology study, the results are still a few months away. It was the cytology report from March that showed the strange translocation, and so it is the current cytology report that we're waiting on.

Chris is still suffering from the car accident. Interactions with the at-fault driver's insurance company have been difficult. As of this moment, nothing has been resolved. We've retained an attorney, so I won't be discussing the event on the blog. When I'm able to say something, I will post.

Stumping my poor doctor

2011-06-21T13:08:00.003-06:00

My life has been a bit more full than I would like this month. I'll take pity on you all and only talk about the last few days. Friday, June 17, Chris was in a horrible car accident. While Chris was driving in to work, a man in a super-duty pick-up truck drove through an intersection and hit Chris' car right in the driver's side door. The other driver did not have the right-of-way and drove across 2 lanes of oncoming traffic and through a median. The impact caused Chris to hit his head against the pillar between the driver's side and passenger window. He was taken to the ER and had a CT scan as well as X-rays.

I got to the hospital while he was out getting scanned. He was discharged a few hours later and has been recovering since. There's still a bump on his head and he continues to get headaches in addition to being sore all over. Thankfully, he didn't break any bones.

We're in the process of dealing with the other guy's insurance and that's all I have to say about it. I'll keep everyone posted as to Chris' recovery.

As for me, I had a few appointments in Houston on Monday. One was a regular check-up with my transplant doctor. The other appointment was for some testing related to my transplant, but having little to do with leukemia. I haven't blogged about the issue, and am sorry for being cryptic. I'll post about it in detail once the test results come in and I have a better understanding of what's going on. All I know is that it's not life-threatening and so you shouldn't worry.

The cytology report from the bone marrow biopsy I had done in March was finally available. My doctor had ordered several molecular studies that are routine when dealing with bone marrow transplant survivors. Some of these tests take days, most take weeks, and some, like the cytology study, can take months.

The FISH test showed no leukemia clones with a MLL gene rearrangement. Clone cells are effectively the little buggers that kick off the whole leukemia process The clinical flow cytometry study was negative for minimal residual B-lymphoblastic leukemia (this is the type of leukemia I was originally diagnosed with).

I rarely go into this much detail when sharing results, but felt it was necessary so that you all could put the next set of results into perspective.

The cytology report showed an anomaly. 20 cells were studied. Of those 20, 19 were diploid female karyotype 46, XX. This means that they were normal, female and had the correct number of chromosomes. 1 cell was determined to be pseudodiploid metaphase 46, XX, t (7;11) (q22;q13). Fundamentally, this means that the cell was captured in the midst of development, that the correct number of chromosomes was present, that it was female, and that it had a translocation of the number 7 and 11 chromosomes.

Generally speaking, a translocation occurs when portions of the chromosome swap places. That's a quick and dirty definition and doesn't encompass the whole of the process. To further put things into perspective, my original leukemia included a t (4;11) translocation which meant a transplant was my only hope.

Before yesterday, I'd never heard of a t (7;11) translocation associated with ALL. Dr. K. explained that it simply doesn't happen with my form of leukemia. My transplant doctor was very thorough in explaining what this finding could mean. She believes the cell was an artifact, meaning that it was a one time occurrence. The cell may have been created during the process of testing. For the sake of due diligence, another bone marrow biopsy was scheduled for the same day. She wants the same tests performed to see if another cell with a t (7;11) translocation appears.

If it does show up again, I'll be monitored. I'll probably start taking maintenance chemotherapy if it does, but that's not certain. As my doctor explained it to me, there are no studies to guide any treatment. I got the impression that the transplant doctors that discuss my case would be making it up as they went along.

That is the worst case scenario.

I want to stress that my doctor felt that we weren't going to have to go there. I believe her. I can tell you that I feel well. I don't have any of the symptoms that were present when I relapsed in 2008. I'll even go so far as to tell you that the cashier in the hospital cafeteria gave me an employee discount because she thought I worked at the hospital. She didn't believe that I was a patient. When strangers mistake you for a hospital employee rather than a cancer patient, you want to do a little dance, because it feels like you just regained your normal badge.

To further put everyone at ease, here are my blood counts, including normal ranges:

White blood cells: 8.8 K/UL (4.0-11.0)

Red blood cells: 3.88 M/UL (4.00-5.50) It's low, but most transplant patients have a hard time with making red blood cells. The only transplant survivor who I know that has a regular red blood cell count is Nancy and she just celebrated her 5th year post transplant. Love you, Nancy.

Hemoglobin: 12.1 G/DL (37.0-37.0)

Platelets: 414 K/UL (140-440)

Absolute neutrophil count: 6.56 K/UL (1.70-7.30)

My counts are essentially normal. When I had cancer, my white blood cell count was phenomenally high while all of my other counts were close to nothing. The same held true when I relapsed. I believe my doctor when she tells me that this new translocation is probably an artifact. I won't know for sure until the new cytology study is done. I won't have those results for a few months. Until then, I'll continue to monitor myself and check in with my local oncologist.

One more thing to help put this into perspective. My next appointment with my transplant doctor at MD Anderson isn't for 6 months. If she was anxious about anything, she wouldn't have given me such a long break between visits.

As for the other health thing that I'm being so cryptic about, the specialist I'm seeing will have the results in a few weeks. I'll disclose everything once I have the information.

Dori

2011-06-11T09:59:00.002-06:00

Most of my regular readers will probably know that Dori Brown was stolen by cancer this week. I say stolen because I still believe cancer is the worst kind of thief, indiscriminate and indifferent to its victims and their families.

If you haven't read her story, you can find it here and here.

The first thing you might notice when you go to either site is her unbelievably bright smile, or maybe you'll notice the warmth in her eyes. I was lucky enough to meet Dori in April and I can honestly say her pictures don't do her justice. She was so much more vibrant in person. For lack of a more poetic description, she was just so Dori.

I've wanted to write something to honor her since I learned the horrible news, but my heart has been filled with tacks and the words refuse to come.

Dori was an infinitely gorgeous soul who touched every single person she came into contact with. I came to love her through her sweet husband's beautiful writing and meeting her in person only served to solidify my belief that she was one of those very unique individuals who instantly inspires love.

My heart hurts for Jim and their beautiful children, and I wish I could write something more fitting, but I just don't have the words.

Milestones that don't include cancer

2011-06-04T09:07:00.002-06:00

Today, Chris and I are celebrating our seventh wedding anniversary. Not in a hospital. Free of cancer. At home. It feels good to be able to say those things.

Happy anniversary to the love of my life. I wouldn't be here today if not for him.

Help PJ

2011-06-03T07:03:00.003-06:00

My friend PJ is running the New York City marathon to honor our mutual friend Dori. PJ's a member of the 2 time transplant club and an all around amazing person. She's training for the marathon through Team in Training, affiliated with the Leukemia and Lymphoma Society. Please donate through her TNT page to help support cancer research and provide services for the many patients in need. Do it for Dori.

Here's PJ's latest post with website information:

Help Me Blood Cancer Patients

I'm running the NYC Marathon in November to raise funds for Team in Training, specifically in honor of Dori Brown. Please pass on this message to anyone you know who is able to help this cause, our cause.

Thanks for your help.

http://pages.teamintraining.org/nyc/nyc11/pjempty

The blog hasn't been abandoned

2011-05-21T08:49:00.004-06:00

I haven't abandoned the blog. I'm here and I'm working on something to post, but it's not quite right yet. I managed to pass the 2 classes I was taking this semester, which is a relief. I saw my local oncologist 10 days ago and all is well. My liver numbers were a little low and my white blood cells and platelets were a little high, but according to Dr. B., the difference was so negligible as to be insignificant. I'll see him again in a few weeks. I've started working on the 2 independent study classes i elected to take over the summer and have been surprised by the amount of work expected for 1 of them.

Right now, I'm heartsick over Dori and don't feel like writing much of anything.

A tiny update

2011-05-04T06:51:00.002-06:00

Tomorrow is the last day of class for me for the semester. I got an email from one of my professors yesterday with a breakdown of my grades and a note. I'm one of only 4 people in the class with an A average, so I don't have to take the final. It's my law class and the news makes me supremely happy since the final is made up of 200 questions spanning topics covered over the entire semester.

As for my other class, I'm a bit concerned since I didn't do so well on the last test. A few of these classes have been cancelled over the last month which has meant cramming twice the material in when we do have class. It's a lot of higher math and my poor chemo addled brain isn't keeping up. I need to get at least a C in the class in order to move to the next section of the same topic next semester. If I don't, I'll fall behind a semester and graduation will get put off.

I've been out of the game for 4 years, so you might imagine my anxiety at having to repeat a class that I had to drop last semester due to health issues. I'd rather eat dirt. My final isn't until May 13, so I plan on spending my days studying, which is why it will be unlikely to read anything further on the blog until after that date.

As for my health, I feel great. I'm back on the treadmill and clothes are fitting a little better as the steroid swelling slowly recedes. I still have close to 30 pounds to lose and it is slowly happening.

One month off steroids

2011-04-19T15:08:00.002-06:00

It's been one month since I stopped taking steroids and I can now fully appreciate the difference their disappearance has made. I'm not compelled to continually eat and I'm sleeping through the night. I stopped taking Lasix and Potassium supplements 3 weeks ago. I no longer need to plan my day according to my proximity to a bathroom.

I've lost a kilo (2.2 lbs) since my last check-up at MDA. This is in spite of the fact that I took a month off from the treadmill. My face is thinner. I'm able to climb stairs again. There's a unicorn in the backyard.

Okay, that last sentence isn't true, but there is a vegetable garden and everything in it is still alive. We even have one tiny grape tomato just beginning to take shape. We also have a cut worm infestation bent on destroying our efforts. It's like Green Acres on a very small scale minus Arnold the pig.

Dr. K. had a terrible cold, so she wore a mask and stayed on the other side of the exam room. She told me that my numbers look good and that I don't have to return for another 2 months. Music to my ears. I got to catch up with my APN, Bev, who cracks me up and Katie, a nurse who looked after me during transplant number 2.

In case you're interested, here are the numbers:

WBC: 10.3 (Normal)

RBC: 3.76 (Low)

Hemoglobin: 12.2 (Normal)

Platelets: 379 (Normal)

ANC: 7.5 (High due to the effect of steroids, but coming down.P

My magnesium level is still low, but acceptable. My liver counts are solidly normal. My tacrolimus level is right where the doctor likes it. She said that I might be able to go to a lower dose after my next visit. The rest of my medications remain the same.

Life is good. The cats are good. Chris is good. I can't ask for anything more.

The friends you will make

2011-04-19T14:25:00.004-06:00

I've spent a lot of time inside my own head these last two weeks when I wasn't busy with school work. I've been thinking about a few of the contradictions you come to live with after a cancer diagnosis and how they've changed the way I connect with people. I'm unsure of how to interact with people in some social situations thanks to cancer and I'm less tolerant of particular behaviors. I can't hear some one sneeze without feeling the overwhelming need to whip out the Purell.

One of the biggest mysteries of life post cancer diagnosis for me is how I can feel more connected to people I've never met than people I know in real life. I've made plenty of virtual friends since being diagnosed in January 2007. Most are also cancer survivors. I've been able to read their blogs and correspond through emails and twitter. I regularly talk to my friend, PJ, who is stalwart in calling this phone-phobic girl.

We all share a connection through our collective experiences. Sometimes we measure our own progress against each other. Sometimes we look for what we should expect in our own journeys. And mostly, we share in the little victories that remind us we're one day further from that dark day of diagnosis.

I started following Jim and Dori late in 2007. Dori was diagnosed with AML in 2007, a few months after my diagnosis of ALL in the same year. Chris and I checked in on them regularly and we saw a lot of our own story in their writings. It's hard not to start caring about people you've never met when you peek in on their lives every week.

Dori had a matched unrelated donor transplant with a 10/10 HLA match at Vanderbilt and was getting back to living her life and raising her 2 beautiful kids. Last summer, she relapsed and suffered with one hell of a bout of GvHD. She spent 53 days in the hospital. The cancer went into remission. The extreme GvHD acted like a sort of mini-transplant.

2 weeks ago, I read the news that Dori had relapsed again. I never imagined that I would get to meet Jim and Dori since we live so far apart. When I read that they were going to MD Anderson for a second opinion on treatment options the week before I had an appointment to see my transplant doctor, I thought it might be more than a coincidence.

I got to meet Dori in the flesh yesterday while she was receiving chemotherapy. I don't know that I can adequately explain the instant sense of connection you get when you look into the eyes of a fellow survivor. You just know. You speak the same language regardless that you don't share the same disease or experience.

I looked Dori in the eye and recognized her determination and grit. She has her game face on. She's taking notes and asking questions. She's getting ready to kick cancer's ass.

I didn't get a chance to meet Jim because he was driving back from Tennessee, but I got to talk to him on the phone. He reminded me a lot of Chris and I know he's going to be Dori's biggest advocate.

MD Anderson can be a very overwhelming place, especially your first week there. I don't know if our visit helped, but I do know that I'm grateful for the opportunity to talk to another tough chick whose story I've followed for the last 4 years.

Unintended absence

2011-04-01T17:05:00.002-06:00

I've been buried under a load of schoolwork and have had 3 tests in the last 2 weeks. It's been brutal. As far as my health is concerned, all is well. I had a check-up with my local oncologist today and he gave me a clean bill of health. My chemistries are normal. My platelets are over 400 and my white blood cell count was 9.5 k/ul. That's the high end of normal. My weight is the same as it was at my last check-up 4 weeks ago, which means that I've lost the 2 pounds I gained right before my last MDA visit. I know that's a little confusing and I apologize.

Dr. B feels that the weight will come off quickly once I hit my stride. I reminded him that it took a year to lose 24 pounds last time. We'll see.

That's all I have to report for now.

March's MDA recap

2011-03-19T16:55:00.007-06:00

WBC: 12.6 K/UL (4.0-11.0)

RBC: 3.65 M/UL (4.0-5.50)

HEMOGLOBIN: 13.0 G/DL (12.0-16.0)

PLATELETS: 333 K/UL (140-440)

ANC: 9.52 K/UL (1.70-7.30)

LDH: 547 IU/L (313-618)

ALKALINE PHOSPHATASE: 59 IU/L (38-126)

ALANINE AMINOTRANSFERASE: 12 I/UL (7-56)

I had my monthly visit to MDA and all seems to be well. I was scheduled for blood work, a bone density scan, chest x-ray, complete pulmonary function test, bone marrow aspiration/biopsy, and 3 specialists. As you can see from my blood work, my white blood cell and absolute neutrophil counts are still high due to steroids. My liver is behaving and I am grateful. We are once again friends and I will do everything within my power to keep it this way.

The day was full of pleasant surprises, the first of which being the result of my PFT. My lungs are still showing restrictions which is to be expected given the volatile nature of GvHD. 3 months ago, my lung function was at 66%. This week, I'm at 75%. The pulmonary specialist prescribed a rescue inhaler in addition to the inhaled steroids I already take. When I questioned her on the reasoning, she told me it was only a precaution and that I may never use it. She wants me to have it on hand just in case. Since allergy season is in full swing and I'm already having issues, I should be thankful to have it.

My endocrinologist and I were both pleasantly surprised by the results of my bone density scan. I've gained 9.2% in my spine, and over 5.5% in both hips. I've made gains in all of the areas that were tested. Dr. J. confessed that he was expecting a 3% increase at the very most and was prepared to see a 1% increase. He advised me to keep doing what ever it was that I'd been doing. When I told him about the marathon sessions on the treadmill 5 days a week, he laughed and told me to add in weight training. He was serious, and so I will.

These increases bring me out of the osteopenic danger zone and into the very lowest level of normal. Dr. J. told me that I would never be able to recapture the measurements taken before my very first round of chemotherapy, but that I could come close. He likened any increases to making deposits into the bank. I may have to rely on these one day to keep me from shattering a bone.

I saw my transplant doctor almost immediately after having the bone marrow biopsy, so no preliminary results were available. Full results won't be in for another month. We're hoping for no molecular residual evidence of disease. Since this was my 30 month biopsy, I shouldn't have another for a year. Never say never, though.

Dr. K. is concerned with my weight gain. I picked up a kilo since last I saw her. I have been hitting the treadmill and even went so far as to replace my regular lunch with a high protein, low calorie shake 3 weeks ago. Chris started drinking them a week ago and has already lost 2 pounds. She's undecided as to whether the weight can be attributed entirely to steroids or GvHD of the dermis. My skin is still supple, so she's hoping it's the steroids. To test the theory, she's skipping any more tapers in favor of stopping the methylprednisolone altogether. I have my fingers crossed that I can lose a little weight before I see Dr. K. next month.

If it turns out to be GvHD of the dermis, I'll have to go back on high-dose steroids. Boo.

As a special treat, I got to meet a twitter friend in real life. I met Jody through my friend, Lisa. Not only is she an amazing person, but she's also a cancer survivor. When she heard that I'd be at MDA, she offered to drive in for a meeting. We got to visit for 2 hours, but it didn't seem like nearly enough time. She is just an amazing, caring, gracious soul and I'm so happy Chris and I got to meet her in person.

Chris and I celebrated this weekend by putting in a vegetable garden. This is our first attempt at growing anything edible and we're hopeful. We planted bibb lettuce, mesclun mix, carrots, 2 types of bell peppers, and 3 types of tomatoes. Since my friend, Lisa, asked for pictures, here they are:

Very few people know that I have an obsession with products flogged through infomercials. I am fascinated by them. Lest you think my house is filled with these same items, rest assured, my curiosity remains mostly unfulfilled. When I saw the Topsy Turvy in all of its as-seen-on-TV cheesy glory at the big box DIY store, I had to give it a shot. There are 2 varieties of tomatoes planted in the traditional garden, and a Creole tomato specimen in the upside-down planter. I'll pretend it's a science experiment.

We started 2 trays of herbs from seeds a few weeks ago. They seem to be doing well and may be ready to transplant into bigger pots in about 2 weeks. In case you're curious, we planted: chives, cilantro, marjoram, thyme, rosemary, oregano, sweet basil, parsley, and Thai basil. There's also a tray of snapdragons that we started last week. The sprouts are so tiny, I didn't want to torture you with them.

Chris also set up an irrigation system that I helped put into the garden. This should help shelter the plants from my forgetfulness. We planted containers last weekend, but forgot to take pictures. I'll post them some time next week.

Please Help

2011-03-12T19:17:00.001-06:00

I can't say anything about the situation in Japan that hasn't already been said. Our burdens are small in comparison to the depths of agony and magnitude of suffering taking place.

We have a chance to ease the grief of the Japanese people and help them rebuild from this unprecedented disaster.

Please consider making a donation to the Red Cross at the following link.

American Red Cross: Japan Earthquake and Pacific Tsunami

Chris

This and That

2011-03-07T07:37:00.002-06:00

Forgive the tardiness of this latest post. My laptop has decided to have a mid-life crisis and insists that it's an overpriced paper-weight, rather than a computer. I'm fairly certain the problem has much to do with the operating system. I'll fool with it some time this week when I feel like banging my head against a wall. I've inherited Chris's laptop, which is rather nice considering how much faster it is than my little work horse.

Very little has changed since I last updated. My weight is still up. I've now gained 24 pounds. When I was on steroids in 2008-2009, I gained 24 pounds. I was only on the blasted pills for 4 months then, so I should be grateful that I haven't gained more this time around. I'm exercising and have modified my diet once again. Last week, I was down 2 pounds. I'm almost convinced that it's time to join a program.

I do have one happy event to report. Last Thursday, I was able to climb 2 flights of stairs without passing out at the top. I've been gearing myself up for this little adventure for weeks. The only thing holding me back was that I knew that I couldn't use the handrail to help me along. There's a valid reason. The stairs in question lead to my 2 classes in PFT Hall. The handrails are regularly cleaned throughout the day by the janitorial staff using the same mop and water that was just used to mop the floor. We've all seen the murky water and gray mop heads go straight from the one task to the next. There's not enough hand sanitizer in the world to tempt me to touch those things on purpose.

I was early for class and there weren't a lot of people around, so I took the chance. Half way up the stairs, I remembered the backpack full of binders and books strapped to me. I managed the extra weight just fine. It's funny for me to think that I can spend 100 minutes on the treadmill without a problem, but actually bearing my own weight 6 inches at a time gives me pause. I'll keep trying. It's the only way to succeed.

Monthly visit with my local

2011-02-25T14:15:00.001-06:00

I saw my local hematologist/oncologist last Friday. All is well. I don't have any numbers to post because I didn't see them. Chris was with me and had a look at the computer while we waited. According to him, my white blood cell count is 12 k/ul. That's down from 2 weeks ago and technically, the high end of normal.

Dr. B. said all of my numbers are normal and joked about my medication list looking like it belonged to a little old lady. It really does. I'm still on quite a few drugs.

My hair continues to fall out. It's gotten to the point that I can't cover the thinness with a well placed comb-over. I saw my stylist, Lydia yesterday and artist that she is, she cut it in such a way that there is the illusion of volume. I adore her.

Dr. B. thinks the thinning hair may be due to GvHD. My transplant doctor speculated that it was GvHD as well. I've been using a steroid topical solution on my scalp and have noticed that I'm not losing as much hair. I won't be able to see any new growth for 23 days. Until then, I'll continue in my quest for a certain real estate tycoon's comb-over secrets.

Chris's broken arm continues to heal. He has another appointment with the orthopedic surgeon in 2 weeks. He's getting more range of motion back, and able to do more for himself. Next week, he wants to try driving. I'm not so sure.

Cancer is a Thief

2011-02-25T14:00:00.001-06:00

I've spent the last few weeks so caught up in class-work that I haven't had enough brain power to spare for the little things. I haven't read a book for pleasure in ages and I haven't written a word.

My friend, Lisa, recently posted a piece about the crazy things people say to you when you have cancer. It made me start to think of many of the cliches we've all been subjected to when friends and strangers are trying to offer comfort. I don't fault most people. It's hard to know what to say and they often feel compelled to say something. Unfortunately, a multitude of people lack filters and so they say the first thing that comes to mind. I've heard some fairly shocking things and I've gotten some truly hysterical questions. One friend thought a bone marrow transplant involved having all of your blood removed and replaced with healthy blood. I did not laugh as I explained the procedure, but I howled when I was out of earshot.

The one cliche that bothers me most is, "Cancer can be a gift."

Really? If so, I'd like the receipt so that I may return it for something a little more me.

Cancer is a thief.

It siphons away your life and dominates your thoughts and time. Cancer steals your joy and robs your loved ones of their peace of mind. It may slowly creep into your life, or explode in your lap when you're having the best week of your life.

Friends who can't cope with your diagnosis slip and slink away, glad that it's you and not them.

Cancer separates you from your orderly little existence and forces you to fight for what matters. It is a constant companion, even when your body is free of the dirty little mutant cells. The word always finds a way to slither into your thoughts so that you waste precious time and energy on the "what ifs?"

Cancer robs your body. Treatments are toxic and leave a lasting impression on your organs, joints and muscles. You may have scars from surgeries or procedures.

Cancer is not a gift.

For once, it's not me

2011-02-10T15:46:00.001-06:00

Chris and I spent the better part of last night at the after-hours clinic in Pairieville. For once, I wasn't the patient. Chris slipped while walking through the living room and fell on his right side, taking most of the impact in his arm and shoulder.

X-rays revealed a longitudinal fracture of the right radius. The clinic nurse wrapped his arm in a splint and gave Chris orders to follow up with an orthopedic surgeon today.

His mom was a total all-star and took time off from work to bring him to his appointment while I was in class.

The doctor informed Chris that the bone in his right forearm had been crushed, but probably wouldn't require surgery. He has to wear a hard splint for several weeks and follow up with physical therapy.

Right now, he's miserable and in pain and unable to work since any rotating motion in his wrist causes the bone fragments to pull apart.

I'll keep every one posted on any new developments.

2011-02-09T08:08:00.002-06:00

WBC: 14.9 K/UL (4.0-11.0)

RBC: 3.57 M/UL (4.00-5.50)

Hemoglobin: 12.5 G/DL (12.0-16.0)

Platelets: 368 K/UL (140-440)

ANC: 13.78 K/UL (1.70-7.30)

ALC: 0.68 K/UL (1.00-4.80)

Alkaline Phosphatase: 55 IU/L (38-126)

Alanine Aminotransferase: 18 IU/L (7-56)

LDH: 671 IU/L (331-618)

Where do I begin? For the most part, my blood work is normal. My liver is behaving. My white blood cell and neutrophil counts are still a bit elevated thanks to steroids, but not alarmingly so.

My weight is still up. Dr. K. is unhappy about it. Since I last saw her a month ago, I took it upon myself to modify my diet. I cut back on my daily calorie intake. I increased my water consumption from 2 liters a day to close to 3. I continued to exercise. Monday, I weighed in at 158 pounds. The exact same weight I was a month earlier. My waist is even a bit thicker than it was. Dr. K. asked me to cut fat consumption back even further, then she apologized for having to ask it. I do love my doctor.

It's the steroids. I know that. They cause fat to be deposited differently in the body. In my case, the fat settles around my middle. I have the kind of pot-belly that can regularly be seen during summers in the south when guys let it all hang out at their camps on Lake Maurepas.

Dr. K. cut my steroid dose in half to 4 mg every other day. She also warned me that I could expect to be on this dose for 3-6 months. There are 2 reasons. First: If the steroids are stopped too soon, my immune system could stage another attack on my organs and I'd have to start the high-dose steroid train all over again. I've managed to evade AVN twice, I don't know if I could do it a third time. The second reason for continuing on a low dose for such a long period is thanks in large part to my lazy glands. Your body doesn't start making its own steroids naturally until 1 month after you've stopped taking them. This applies to individuals who've been taking high-dose steroids over a long period. You shouldn't worry about it if you get a dex pack for mono. The course I've been moved on to is like a primer for my adrenal glands. They need to start getting ready to take over. From past experience, I know that I will be lethargic and unmotivated over the next few weeks as my body becomes accustomed to the lower steroid dose. I've already reminded Chris.

I'm still retaining fluid to the point that I can't wear my wedding ring. Dr. K. advised me to move from taking Lasix as needed to taking it every day.

As for the ongoing problem I alluded to in the last blog post, my hair has been falling out for the last 2 months. It's gotten to the point that I have to very strategically style it in order to cover my scalp. Dr. K. wasn't sure if it was due to GvHD or steroids. At the moment, there's nothing I can do about it. The dermatologist who specializes in GvHD wasn't available to see me on Monday. Dr. K.'s team is going to try to get me in next month to see Dr. H.

Overall, I'm well. Classes have kept me really busy, but I'm enjoying the challenge. Chris is busy with work. The cats are occupied with the business of being cats, which I'm sure involves schemes to get more treats and plots to oust the stinky humans from the bed.

Not much happening

2011-02-06T09:40:00.002-06:00

A token post to let you all know that this week has been relatively quiet. There has been an ongoing issue that I think is related to my thyroid and various medications that I'll discuss in the upcoming week. I'm heading to Houston tomorrow, so I'll check-in again Wednesday with an update.

Catching up

2011-01-29T10:03:00.003-06:00

The month of January has been populated by pseud-minor house related calamities. I haven't blogged about them because it's been such an effort to get the issues resolved. After a month of waiting for estimates from various contractors and then dealing with some of their crazy personalities after receiving said estimates, we settled on a larger local outfit. It was 2 weeks before there was an opening in their schedule in order to fix our chimney. It rained something like 10 of the 14 days while we waited.

The chimney is now fixed and they did a fantastic job. Then the over-the-range microwave had a complete meltdown while I was reheating something. It made the kind of noise you'd expect to hear while watching a really bad 1950's sci-fi movie about a crazy scientist. Think exploding vacuum tubes. Then there was the smell of ozone.

I lived in the time before microwaves were in every household. I spent the first 10 years of my life blissfully unaware of the supreme convenience of such devices. 7 days without this luxury nearly drove me crazy. I would be doomed if you dropped me in the wilderness.

The new OTR microwave was installed last week. The day it went in, I went out and bought microwave popcorn. Just because I could. Now the range is making a strange clicking noise intermittently. Until the range completely dies, I will deal with it.

Seemingly, all that remains is to paint the ceilings to hide the water stains from this month's adventure. It can wait until spring break.

As for me, the weight is still with me, as is the fluid retention. The 3 days of doubled lasix helped to reduce the swelling in my hands. Since I'm supposed to take it as needed, I decided to skip a day to see what would happen. Misery. The fluid came back with a vengeance. Exercise isn't making a difference and so I've made more adjustments to my diet. They haven't been helping, either. I'm resolved to being patient. I know the weight will come off and things will return to normal in a few months.

On a really bright note, the steroid yuckies seem to be resolving and I feel like a normal human being again. I'm sleeping more soundly and feeling less blah, for lack of a better description. The swelling in my face and neck is slowly resolving and most days it doesn't look like my cheeks are trying to swallow my eyes.

Classes are going well. Because of the materials being studied and the way the professors have structured the classes, I'm guaranteed homework and a quiz in each class every day. I can also count on being called on to answer questions about construction law in Louisiana. It is convoluted and a little crazy. After having taking a construction business administration class, I wondered what compelled people to start their own construction outfits. Now that I'm learning a little something about the laws that govern construction, I'm really curious. The odds seem to be stacked against you from the beginning.

I'll try to get something up on the blog once a week. Because of my schedule, I can't guarantee a certain day. Just know that I am well. Chris is well and the cats still rule the roost.

Happy Birthday

2011-01-23T18:41:00.001-06:00

My friend, Patricia, who is also a two time transplant club member is celebrating her birthday today. Happy birthday, PJ!

Holding an ocean

2011-01-21T12:06:00.002-06:00

The new semester started Tuesday and thanks to the internet, one of my professors was able to post assignments ahead of class. I have been hiding under textbooks since Sunday. Last semester gave me a good sense of what I might be able to handle this time around. I'm only taking two classes: Construction Law and Statics/Mechanics/Dynamics. Both classes require a lot of outside reading and both professors have structured the coursework so that you will always have something due each class period, or a quiz at the very least.

Earlier this week, I noticed that my fingers were swollen to the point that I couldn't get my rings off. I've been taking lasix, so this shouldn't have been the case. I contacted my transplant team and was advised that I could double the lasix dose for three days, but I'd need to have blood work done locally.

I finished the new course of lasix yesterday and saw my local oncologist this morning. My weight is still up and I'm still retaining some fluid. My transplant doctor wanted to be sure that my electrolyte levels weren't low due to all of the excess flushing. Much to my surprise, they were absolutely normal. My local doctor pronounced me to be perfect. The man has a medical degree, so he must know what he's talking about.

For those that are interested, here are the numbers:

WBC: 13.1 k/ul (4.5-10.8) Dr. B. assured me that it's mostly neutrophils thanks to the steroids.

RBC: 3.67 M/ul (4.2-5.4) They've been a little low for months now. Nothing to be worried about.

Hemoglobin: 12.9 g/dl (12.0-16.0)

Platelets: 397 k/ul (150-350)

ALC: 2.3 k/ul (1.3-2.9)

ANC: 9.5 k/ul (1.5-10.0)

ALK PHOS: 37 IU/L (32-92)

AST/SGOT: 14 IU/L (10-42)

ALT/SGPT: 19 IU/L (10-40)

It would appear that my liver is behaving. My liver enzymes are blissfully normal. You have no idea how happy this makes me.

I'll see my transplant doctor in February, and until then, my medical dance card should be empty.

Giving in

2011-01-10T08:13:00.002-06:00

Last Thursday, I managed to find a pair of the jeans I last wore while at my heaviest on steroids. At that time I weighed in at 164 lbs. The weight was from a combination of steroid eating and fluid retention. I tried them on and could just barely button them. My current weight is 152 lbs. It's most definitely mostly fluid retention.

My disappointment at the poor fit coupled with my extreme discomfort doing most things compelled me to email my transplant team. I stopped being stubborn and gave in to lasix.

Lasix is a diuretic that can be administered via IV infusion or in pill form. I've only had it as an IV while in the hospital. My experience with it then was that it worked within 15 minutes and that I'd need to urinate every 10 minutes until the drug wore off.

I started taking the lasix pills Friday. They don't work as quickly and the urge to run to the water closet doesn't approach the scale of an all out emergency. However, I was feeling more comfortable in my own skin by the end of the night.

I haven't really discussed it before, but the excessive pressure around my torso made digestion a nightmare. Anything I ate would sit like a stone in my stomach for most of the day. My abdomen would become distended with each subsequent meal. Extreme constipation was my co-pilot.

Saturday, I could eat a meal and feel normal. I didn't have to work as hard to draw breath. Lest anyone become alarmed, I did not have trouble breathing because my lungs were inflamed. The pressure from the extra fluid meant that I had to exert a little more to draw breath. Once the lasix started to work, my breathing became normal.

Sunday morning, I took my pill and noticed that it didn't seem to be working by mid-day. I soon learned why. The pill is about 1/3 the size of a tic-tac and I have diminished feeling in my fingertips. The pill slipped out of my grasp before it made it to my mouth. I found the pill in its pristine whiteness lying on my bed. I'm thankful one of the cats hadn't eaten it. I took a dose a little before 2pm and it didn't begin working until after dinner. Back to feeling bloated.

I also gave in and bought bigger pants. They'll hang in my closet next to the bigger tops after this is all over. This time, I'll keep them around, just in case.

Another month, another trip to Houston

2011-01-05T19:12:00.001-06:00

To keep things interesting, I had an appointment with my transplant doctor this past Monday. I'm still on steroids, so Dr. K. is keeping a close eye on me. She commented on how my face looked less full. I countered her observation in the negative. Ten minutes into the visit, she began to agree with me.

She noted that my legs are slightly swollen, and my arms are a little more so. She was most concerned with the amount of fluid around my middle. I'm now officially 15 pounds up from my base weight. Dr. K. brought up lasix, which is a diuretic that I've received via IV infusion many times before. This time around, she offered me an oral course spanning 4 to 5 days. I had concerns about the extra work it would create for my kidneys and was told not to worry about it. I still declined. I'm uncomfortable with the extra fluid, but don't feel that the very temporary relief provided by the lasix would be worth taking yet another medication. Dr. K. offered to call the prescription in for me if or when I change my mind. If it gets any worse, I'll follow through.

Dr. K. also wants to recheck my thyroid levels next visit since my waist has become so thick in the last month. Okay.

As for my blood-work, I only have cell counts. The chemistry wasn't available due to the backlog of patients left over from the holiday weekend. Here's what I have:

WBC: 14.4 K/UL (4.0-11.0) Dr. K. suggested that my white count is high due to steroids. I saw my local oncologist 2 weeks ago and my white blood cell count was somewhere around 18 K/UL and Dr. B. speculated that steroids were also the culprit.

RBC: 3.56 M/UL (4.00-5.50) It's low and no one was bothered.

Hemoglobin: 12.0 (12.0-16.0)

Platelets: 259 K/UL (140-440)

ANC: 10.73 K/UL (1.70-7.30) This makes sense since my white blood cell count was high.

ALC: 1.83 K/UL (1.00-4.80)

AEC: 0.00 (0.04-0.40) I'm taking steroids, so the absence of eosinophils isn't a surprise. These are the little beasties responsible for inflammation and GvHD.

I didn't get a frantic call from my nurse later in the day, so I'm going to assume that my chemistry results were passable. I have to return in a month to get rechecked. I've also been given a pass on seeing my local oncologist this month for blood work. My veins are happy.

My steroid dosage has been cut in half. I'll take 8 mg every other day for a month. Dr. K. referred to it as a therapeutic dose. She also looked me in the eye and warned that I would begin to feel terrible and that I should be ready. I am. She assured me that the cushingoid aspect of my features should start to resolve at these lower levels. In layman's terms, she means that my puffiness should start to subside. I know it will, just not as quickly as she expects.

The fluid will come off in its own time. Of course, I'd like for it to dissipate sooner rather than later since it's severely affected my ability to fit into any bottoms I currently own. I can't keep spending my days in pajamas. It's starting to get scandalous and feeding into my reluctance to leave the house. Classes start in less than 2 weeks and I'd like to be able to sit down without the waistband of my pants rolling down from the downward pressure of my muffin top. I know the solution is to by bigger pants, but having just bought bigger tops, I'm reluctant. I'm just being stubborn.

In the mean time, I've been dealing with trying to get a contractor out to look at a leak that has developed around our chimney. The roof on our house was replaced the year that we bought it by the previous owner. From the placement of the water stains in my ceiling and what Chris observed in the attic, it's not the roof or the flashing around the chimney. I suspect it's the 12 year-old masonite siding on the chimney. You can see that it's suffering from age and neglect. It had to be repaired before we bought the house. I'm guessing that it wasn't done correctly.

I got our first estimate today and it took everything in me not to pull out my copy of RS Means and lay it down in front of the contractor to show him that I was familiar with what labor and materials cost. I can throw out estimates fairly accurately and the number I had in my head wasn't close to the quote. When I asked for a better break down, I heard the phrase, "at cost". Hardly.

Two more estimates tomorrow and a no-show today who may or may not try to reschedule. I'm still trying to decide whether or not to casually display some of my construction reference books in the hopes that should any of the other contractors care to treat me like I've never handled a piece of lumber before, they might reconsider.

We'll see.

My first date with Kai

2011-01-01T13:11:00.001-06:00

I think I've been taking steroids for 14 weeks now. You can see how the fluid is collecting in my face, neck, and torso. I also had the pleasure of meeting my nephew, Kai. I may be biased, but he's gorgeous and just a doll.

Sorting it all out

2011-01-01T13:03:00.001-06:00

Over the last few weeks, I've been finding it more difficult than usual to update the blog. It's been a combination of things like the holidays and steroids colluding to keep me away. Mainly, I haven't liked any of the topics that have occurred to me.

My steroid weight gain has topped out at 10 pounds over the last two weeks. It's mostly around my midsection and it's making me miserable. I know it's mostly fluid. I know it will resolve once the steroids stop. I know that I am still me.

I'm still bothered. Nothing fits. Nothing. I had to buy new tops about a month after the steroids started for the same reason. I just ordered a slew of tops in the next bigger size. I am uncomfortable in my own skin and it has brought me perilously close to a pity party.

I'm not complaining about feeling fat. Steroid weight isn't like that for me. If you could see me in real life, you'd know what I was talking about. My legs are still the same size as they were in the beginning, if not smaller from deteriorating muscle tone. I look a bit like a scaled down version of Violet Beauregard from the original Charlie and the Chocolate Factory movie starring Gene Wilder, post gum debacle.

It's a matter of looking like the odd man out. I tend to like to blend in with the herd. Especially post cancer. I've managed to distinguish myself enough in the world of weird disorders and treatment. Time for someone else to shine.

The frustration of this all has fed into a general feeling of what's next?

That's not like me and I've worked on snapping out of it. I'm not feeling sorry for myself, and I don't want any one else to. I am putting one foot in front of the other and I am determined to plow through this just like I've done each time before.

I just had to remind myself of why I keep doing this. I get up every day because I want to stick my thumb in the eye of cancer. I write this blog so that others who have been diagnosed know that they aren't alone. Every day that I push forward toward my goals is a win and we all like to win.

Eight days from today, four years ago, I was told that I had leukemia. Two days later, I started treatment in Houston. I think I'll let these two dates pass with no celebration. I'll have made four years and as far as I'm concerned, that's a major win.

Making time

2010-12-15T15:50:00.003-06:00

I checked the date of when I last blogged and realized how remiss I've been. It seems that the older I get, the less inclined I am to put words down on paper. Fifteen years ago, I would have filled a hundred notebooks with scribbles and thoughts, compelled to share. Now I feel like a hoarder, keeping things to myself.

I am well. Chris is well. The cats are well.

After I took my last final, I gave myself license to give into the steroids and vegetate and let my body slow down. I don't think I left the house for three days and pajamas were my uniform. I did manage to sew a Christmas tree skirt and four stockings for the mantle. I'm not a particularly crafty person, but I couldn't find anything commercially that I liked, and so I elected to make it myself.

Every summer, between the ages of four and six, my mother would try to teach me to sew. She's an expert seamstress and can draw patterns in her sleep. She can also cut without a pattern and turn out something professionally done. Unfortunately, her teaching style was more in the vein of learn through osmosis rather than instruction. What sane person thought a child under six would patiently sit and watch fabric run through a machine while taking notes is beyond me. There were never really any directions and the one time I tried sewing a seam on my own, my tiny finger went under the presser foot and the needle went through my nail and finger. That was the end of it as far as I was concerned. Still, something must have penetrated my resistance to learning.

Final grades posted this morning and with everything going on, I managed to get an A and B. I'm relieved to have it behind me and have started thinking about next semester. I've scheduled three classes, but think that I may cut back to two physical classes and one correspondence class. The last two months of this semester were particularly difficult for me mentally and physically. I know there won't be much of a change in the month I have off before the spring semester starts. I'm still thinking on it.

I had a few follow-up appointments in Houston yesterday and got a few more good reports. The radiologist who reviewed my chest X-ray reported that I had a near complete resolution of obliterates. I saw the X-rays and there were just a few hazy spots where there's still inflammation. They looked great, though. I also had another pulmonary function test. Back in September when the GvHD of the lungs made itself known, I'd failed a PFT. My lungs were functioning at 59%. The PFT I did following that showed an improvement and I was at 62%. Yesterday showed further improvement and I was at 66%. Baby steps. This could take months to resolve and I have to be patient. The baseline PFT that the pulmonologist is using is from June of this year where my lungs were functioning at 86%. I'll get there. Since I'm tapering oral steroids, I've been started on a steroid inhaler for my lungs.

I also saw my dermatologist who specializes in GvHD of the skin. She found a spot of GvHD in my mouth and told me that she could see where I was starting to develop GvHD on the sides of my abdomen. It's still very faint. There's also a spot starting on the side of the bridge of my nose. She also told me that my skin was perfect as far as she was concerned and coming from a doctor of that caliber, I couldn't be more pleased.

The resident who was training with my dermatologist took some extra time with me to go over my medications and my lifestyle. She took the time to talk to me about the link between taking tacrolimus for an extended period of time and skin cancer. I already knew about this. I wear sunscreen and stay out of the sun as much as I can. Tacro can also lead to lymphoma. Trust me, I've done my homework. I'm not going to worry about secondary cancers. I'll worry about doing what I can to stay healthy.

As a further bonus, my dermatologist has released me and I only have to see her on an as needed basis. We're moving in the right direction. I'll see the pulmonary specialist in three months and have all of the tests repeated. There may also be a CT scan for good measure.

There you have it. No words of wisdom, but an update none the less.

Added bonus: Me at 11 weeks on steroids

Haiku for Akiko

2010-12-14T23:25:00.002-06:00

Green frog,
Is your body also
freshly painted?
Sick and feverish
Glimpse of cherry blossoms
Still shivering.

NOM NOM NOM NOM NOM!!!!

Putting down words

2010-12-02T07:54:00.004-06:00

The last month has been a handful for me to handle in terms of sheer activity. There have been class projects and papers and presentations that have been taking up a lot of my time. My nephew was born on Veteran's day. I've been in a doctor's office every two weeks since September, either locally or in Houston.

I finally got to meet an old friend's wife, Mara, while they were down in New Orleans for Thanksgiving. She is as lovely and gracious and fun in person as I knew she would be and possesses the rare talent of putting people at ease with her laugh and a smile. I only wish they lived closer so we could all see more of each other on a regular basis.

And then there's the matter of the steroid taper. Today marks nine weeks of taking methylprednisilone. I started out on a dose of 64 mg daily. When you first start taking this medication, you feel awful. You're jittery and your heart races. You can't sleep and all you want to do is zip around the room while stuffing your face with anything that isn't moving. Then, for one blissful moment, the symptoms causing you to be on steroids resolve and the side effects take a backseat to the sheer relief of being able to breathe.

You don't get very much time to enjoy the moment. Your taper starts as soon as you stabilize in order to minimize the very real damage steroids can do to your system. You're doctor is trying to prevent a host of boogie men from taking up residence in your body. You'd think shunting the steroids from your system would be a good thing, and it is, but you feel horrible while it's happening.

I have felt less than well for the last month. It's not the same as being sick with the flu or on the verge of a cold. It's more a feeling of pervasive tiredness and the inability to get motivated. I'm suffering from muscle weakness and shake constantly as a result. I can't stand for long periods without leaning on something for support. If I forget myself and sit on the floor out of reach of a prop with which I can pull myself up, I'm stuck like a one-legged turtle flipped on its back. I have a hard time with stair risers and it takes me longer than it should to get in and out of a car. I can only imagine how bad it would have been had I not been exercising. It is getting better.

I've had a hard time keeping up with the blog with everything going on. There have been many half-hearted attempts at putting down words that have been discarded in the face of everything. I haven't abandoned them completely and I'll flesh out a few for future posts.

I was in Houston yesterday to see my transplant specialist. She took one look at me, touched my face and apologized for what steroids had done to my appearance. This made me smile because she's just one of those special individuals who should be a doctor and is a credit to her profession. Until we spoke yesterday, I hadn't realized that I was in a very small percentage of people who happen to be extremely sensitive to steroids. I've known from previous treatment that I react quickly to the drugs, but didn't realize that my reaction was so extreme.

When Dr. K. saw how swollen my face, neck, and shoulders are, she decided that I needed to be on an accelerated taper. I'll start taking 48 mg every other day for a week, then 32 mg every other day for a week. I'll see her again following that with the plan being to get me down to 16 mg every other day for a week. She'll slow the taper down from there and speculated that I'll be placed on inhaled steroids for my lungs. I'll also be seeing the GvHD lung specialist the same day and having a complete pulmonary workup as well as more xrays.

If history repeats itself, it will be a little over six months before I lose all of the swelling in my features and around my midsection once steroids stop. I'll be relieved once I stop feeling like my skin's about to burst open from all of the pressure. It's that uncomfortable.

As for my blood work, it was mostly normal. I've managed to lose the report, but here are the numbers from memory:

WBC: 8.7 normal

RBC: 3.87 low, but on the cusp of normal

Hemoglobin: 12.7 normal

Platelets: 142 low end of normal

ANC: 6.66 normal

Alanine aminotransferase: 44 normal

Aspartate aminotransferase: 21 normal

LDH: 1163 really, really high

Two of my liver enzymes are perfect and that's what we've been aiming for. My LDH continues to trend in the wrong direction and so Dr. K. had me go in for a little more blood work to test my Epstein-Barre virus titers. EBV is the nasty little bug that causes mono and most adults carry it. It's also what leads to PTLD(pre-lymphoma) in patients with suppressed immune systems. I've already been treated for PTLD once and it was enough. I'd rather not do the riddled with tumors thing again. If my titers are high, I suspect that there will be an increase in the amount of valtrex I take in the hopes of heading off trouble. If it's not EBV, then I don't know what the next step will be. I'll know more in two weeks once the test results come back.

I have finals next week, so this will likely be the only post from me this week. Chris has a video he took over the weekend that he was supposed to post. You know what to do if you want to see it.

This is a picture at eight weeks on steroids

Bascom

2010-11-24T13:33:00.002-06:00

I can't remember if I mentioned this, but a few months ago, my father in law entered one of his hand carved rocking horses into a national art competition sponsored by PBS. Out of the thousands of entries, he won fourth place. I've had the pleasure of seeing his pieces in person and they are amazing and so beautifully crafted. The child that recieves one of these heirloom pieces is truly lucky. Bob also handmakes cradles in addition to rocking horses. If you're interested in more information about purchasing his work, leave a comment and I'll put you in touch.

Steroids, Week 6

2010-11-16T15:58:00.004-06:00

I've almost reached the six week mark on steroids, and so I thought I'd post a picture. The puffiness is much worse in person, and much more evident in profile. I am not exaggerating. If you've been on high-dose steroids for any length of time, you know exactly what I'm talking about.

I also saw my local oncologist today. He pronounced me normal and questioned one of the drugs that I'm on. It's the anti-fungal that I take as a prophylaxis because of the steroids. I'll continue on it until I stop the steroids.

As for my blood-work, here it is:

My numbers followed by the normal ranges:

WBC: 13.1 k/ul (4.5-10.8)

RBC: 4.32 M/UL (4.2-5.4)

Hemoglobin: 14.1 g/dl (12-16)

Platelets: 171 k/ul (150-350)

ALC: 2.0 k/ul (1.3-2.9)

ANC: 10.1 k/ul (1.5-10.0)

Bilirubin: 0.4 mg/dL (0.2-1.0)

Alk phos: 35 iu/L (32-92)

AST/SGOT 18 iu/L (10-42)

ALT/SGPT 49 iu/L (10-40)

Magnesium: 1.6 mg/dL (1.7-2.8)

My numbers continue to trend in the right direction. I can't tell you how pleased I am that my white blood-cells, platelets, and absolute neutrophil count are trending down. My magnesium is low, but it's at an acceptable level for my transplant doctor and the entire reason for today's local visit. It was far too low two weeks ago thanks to the elevated levels of tacrolimus in my system. Low magnesium can cause serious heart problems for transplant patients, not to mention the debilitating leg cramps that come part and parcel with the deal.

As a side note, I'm still waking every hour or so with leg and foot cramps which is really wrecking my days. I've decided to go up on my magnesium dosage to compensate and see if any thing comes of it. I'll let my transplant doctor know when I see her next. Of course, I know that the muscle cramps can also be a side effect of steroids and since I'm also having problems with cramps in my hands, I know that low magnesium may not be the sole culprit.

My liver function is almost perfectly normal. Can you see me smiling from here? Dr. B.'s equipment isn't as sensitive as the cell counter at MDA, but the scale of normal versus today's numbers is so negligible, I'm going to give it a pass. It's close enough and I'll take it.

I still have a problem with tremors. It's not as pronounced as it was two weeks ago, but it's still fairly obvious. A look at my class notes would out me. They're just legible.

Overall, I'm really pleased. If my numbers can remain stable and Dana's immune system continues to settle in, I should be able to continue the steroid taper. By my estimate, if I continue to taper every two weeks, then I should only have another ten weeks left. It usually takes my appearance six or seven months to lose the Cushing's fullness that I always develop to the extreme. I'll be patient.

2010-11-13T08:17:00.002-06:00

Over the last week, the cumulative effects of steroids have made themselves apparent. I've reached that unique point where the effects of the steroid taper are clashing with the last five weeks of my adrenal glands becoming dependant on methylprednisolone. It's not pretty.

I feel like that zebra at the back of the herd being stalked by a pride of lazy lions. You know the one. She's got a peg leg, eye patch, and slight case of mange. She's the one desperately trying to run into the middle of the herd so one of the more sickly specimens gets caught, except she's pretty close to the sickliest zebra in the bunch. That's how I feel.

My skin is stretched tight from fluid retention, so much so that my neck has rings much like the Michelin man. I've managed to stave off major weight gain by hitting the treadmill five days a week for extended sessions and to date have only gained two pounds. Regardless, none of my pants fit because my midsection is swollen from steroids. Muffin top reigns supreme.

The muscles in my legs are a bit withered. I can no longer get up from a squatting position without pushing off of, or pulling up onto something. I dread dropping things because I'm never certain whether I'll be able to pick them up. My arms are noticeably weaker and I can't carry as much. I'm having trouble getting out of cars. It takes me a bit longer to walk to class and I pity the drivers who have to wait on me to cross the street. Even at a hustle, I'm slower than the slowest crosser. I've been using my disabled parking pass more when I run errands.

Yesterday, I asked Chris to accompany me to the grocery store because I didn't want to do it by myself. Normally, I love grocery shopping alone. Yesterday, I dreaded having to load all of it into my car. It's not that I can't do it. It's the fact that it's taking me twice as long. I'm also starting to feel a little more aware of my appearance. I'm not embarrassed that my face is a bit distorted, or feeling otherwise vain in that regard. I'm more aware of the side-ways glances and people quickly looking away when I catch their eye. It makes me feel obvious.

I know many of my transplant friends can relate since we've all done the steroid dance a few times. What I'm feeling isn't new, but I am ready for it to be over. My next steroid taper occurs on 11/17 when I start taking 64mg of methylprednisolone every other day. I'll see my transplant doctor the first week of December and she'll decide on the next step. I'm hopeful that the GvHD remains in check and I'm able to taper once again.

Unbelievable happiness

2010-11-11T15:28:00.003-06:00

My brother and his beautiful wife welcomed their first child into the world today. I cannot believe how unbearably happy this makes me and I can only imagine what John and Mandie are feeling today.

Welcome to the world, Kai.

Halloween

2010-11-08T20:03:00.001-06:00

It's Ann. I'm logged in on Chris's computer. Here is the video Chris shot of our Halloween set up. There's a point where I think he's taking a picture of me and so I have a big plastic smile.

Also, here's a picture of me between four and five weeks on steroids. My cheeks look like they're trying to eat my features.

* Still getting used to imovie

Technical Difficulties

2010-11-08T18:48:00.002-06:00

Liver & Lungs

2010-11-04T07:32:00.002-06:00

It is the day after MD Anderson and I could use a little more sleep.

To get the numbers out of the way:

WBC: 16.6
RBC: 4.39
Hemoglobin: 14.1
Platelets: 131
ANC: 12.12
Alkaline Phosphatase: 75
Alanine Aminotransferase: 63
LDH: 1119

The only normal numbers in the bunch include: red blood cells, hemoglobin, and alkaline phosphatase (liver enzyme). My platelets are plummeting, and everything else is high--mostly due to steroids. My liver enzymes are trending in the right direction. So much so that my transplant doctor surprised me yesterday by having my PICC line pulled. It was an ecstatic moment.

I saw the infectious disease specialist, AKA the fungus expert, and he discharged me from his care. My lung issues had nothing to do with fungus, but the culture did grow para-influenza. I was on so many antibiotics that it was covered and essentially treated.

Next up was the pulmonary specialist who showed me my chest x-rays from the last three visits. It was like night and day. When I was first diagnosed with decreased lung function, the x-ray showed both lungs filled with infiltrates. It looked like someone had dumped a box of cotton swabs into each lung to the point that the lower lobes were nearly opaque. Yesterday's x-ray showed some infiltrates still present, but you could tell you were looking at lungs. I've been told that it could take months before my breathing is normal. I still get slightly breathless when I exert myself, but it's nothing compared to what it was a month ago.

I have to return in December to have more scans and do another complete pulmonary function test.

My transplant doctor is pleased with how I'm reacting to the steroids and has started me on another taper. If all goes well, I can taper again in two weeks. She had concerns about my tacrolimus levels, though. She likes for them to hover around 8 and mine were at 16.9. To put things into context, tacro causes headaches and tremors. I haven't had any headaches, but I shake from head to toe. It's so bad that I have a hard time taking notes in class and yesterday, the phlebotomist had to physically restrain my arm in order to get blood. Dr. K. noticed the shaking right away and immediately throttled back my dose.

My magnesium is also low from the tacrolimus. I have to start taking mega-doses of it to supplement and have my levels checked locally in two weeks. All of the doctors I saw yesterday speculated that the increase in leg cramps interrupting my sleep is a result of low magnesium coupled with steroid side effects.

My brain is starting to shut down and I have a bit of homework to do before class, so I'll have to leave you with this pitiful post. Chris has a Halloween video that he needs to upload. Harass him and it might happen.

Halloween

2010-10-31T07:48:00.004-06:00

I've finally sorted out the reason for my inability to post the weekly pictures of myself on steroids. They keep getting deleted before I've managed to download them to a computer. C'est la vie.

I did manage to hang on to two pictures from the Halloween party we attended last night. My brother's brother-in-law went over the top and turned his house into a spectacular experience. It was so well done, Martha Stewart would have been intimidated. It was also the first Halloween party that we've attended since I was diagnosed with cancer. We had a fantastic time.

Chris went as the evil parallel universe version of himself, hence the goatee.

I went as Alex from A Clockwork Orange.

Weekly doctor update

2010-10-28T08:45:00.003-06:00

I saw my local oncologist yesterday to have blood-work done and my numbers appear to be doing what they should.

For those that are interested:

Numbers in parentheses are the normal range.

WBC: 17.9 K/ul (4.5-10.8)

RBC: 4.30 M/ul (4.20-5.40)

Hemoglobin: 13.4 g/dL (12.0-16.0)

Platelets: 177 K/ul (150-350)

ANC: 14.8 k/ul (1.5-10.0)

ALK PHOS: 47 IU/L (32-92)

AST/SGOT: 29 IU/L (10-42)

ALT/SGPT: 71 IU/L (10-40)

LDH wasn't available when the report was run.

According to Dr. B., that obscene white blood cell count is mostly neutrophils due to steroids. My platelets have also plummeted as a result of steroids, so please avoid approaching me with sharp objects. My liver numbers are down slightly from last week, but not significantly so. I'm pleased overall.

The steroids are starting to manifest their presence in new ways. When I was on the same dose in 2008/2009 I developed severe knee pain. It would wake me at all hours and the simple act of moving my legs was torture. My transplant doctor attributed the problem to muscle weakness. She was right.

Steroids over a period of time rob you of muscle tone, especially in the legs. The only thing you can do is exercise and fight it. I've been doing 60-100 minutes a day, five days a week, on the treadmill in addition to the walking I do on campus. It's been three weeks and I'm starting to feel the loss of tone.

Three days ago, I had a small amount of trouble standing from a squatting position. I was able to do it without having to push off of the ground, but it was an ominous feeling. Two nights ago the knee pain started. It was confined to my right knee and was as hellish as I had remembered. The only thing I can do for relief is to ice it down, and so I did. Thanks to the discomfort, I only managed 3 hours of sleep.

I've also been getting cramps in my hands, feet and lower legs. My thumbs tend to lock in a very unnatural position and all I can do is stretch my hands against solid surfaces until the muscles relax. When it attacks my feet, I have to get up and walk around. It usually happens when I'm sleeping, so I can forget a solid night of sleep for the next few months.

These are all very minor things in the scope of everything. I expected this. I'm doing things to be proactive in the hopes of limiting the damage. I feel well. I've managed to only put on 2 pounds instead of the 20 plus that settled around my middle the last go around. Most importantly, I'm happy that I'm not letting this limit me.

Getting Ready For Halloween

2010-10-27T21:15:00.001-06:00

Thank you

2010-10-27T05:29:00.002-06:00

I want to thank everyone for the birthday love. I managed to accomplish everything that I set out to do and was pleasantly surprised by a dinner date with Chris. Since my CSA meeting was at 6:30, he made a reservation for Galatoire's Bistro at 8. So that we could make it in time, he even came with me to my meeting and patiently sat through the minutiae dressed in a suit and bow tie. It was pretty adorable.

All of your birthday wishes mean the world to me and I'm so happy to be able to connect with you all. Thank you.

Forgetting

2010-10-25T04:47:00.003-06:00

Chris and I have spent the last four years dealing with crisis after crisis. There is a certain rhythm that you fall into; an alarm always primed to go off.

And then you start to forget.

When treatment is your constant companion, you become accustomed to a certain way of life. I had a PICC line installed in my right arm a few weeks ago. It is my third or fourth. I can't honestly remember how many I've had put in. It hangs about two inches off the side of my arm with the insertion point covered by gauze and tegaderm. The sight of it is not alarming to me, because I'm used to seeing them. In me and other people. I don't think twice about it.

Because the access point of the catheter literally dangles from my bicep, I wear a burn sleeve to keep it out of the way. The sleeve is a white tube of elastic mesh that keeps the mechanism under control. Because I live in the eternal swamp of the South, I also tend to favor wearing short-sleeved shirts, which do little to hide the burn sleeve and the strange blue bump underneath. Because I forget.

People stare and I can see many wondering. It's especially obvious in class. I wonder if I should make an announcement explaining the gadget, or dismiss the looks as my own paranoia.

I've forgotten how the steroids and increased tacrolimus make me shake and vibrate. Both hands have an obvious tremor that I don't try to hide. It would be useless.

I'm amazed at how much I've forgotten in the last four years. Moments that I was sure would stay with me are gone until I am reminded by Chris or a question from a friend. Forgetting isn't something that I strive for. It has simply happened.

Those teary, frightening moments of absolute resolve have been replaced by something I think most cancer patients strive for. Normalcy. Those once irritating, idiosyncratic moments of repetition have become a respite for me. I no longer mind doing those things that once seemed like moments lost, never to be recaptured. Standing in line at the post office for 20 minutes? Bring it on. 30 minutes waiting in line for a prescription? Annoying, but so pleasingly normal.

When you have spent months in the hospital and entire days on end at clinic, you wish for these things. You miss normal.

Why am I writing about this? Chris asked me a question yesterday that brought it all into focus.

"What do you want to do for your birthday?"

Without missing a beat, I ran down Tuesday's schedule: I had a paper to finish, Highway Construction class, and a Construction Student Association meeting that evening. Five years ago, I would have longed to take the day off. I was so pleased to be able to list the activities planned for Tuesday that I might have smiled.

I'm relearning what it's like to be normal and I won't be forgetting the feeling any time soon.

Houston again

2010-10-21T05:36:00.001-06:00

Another long day in Houston resulted in a little good news. The liver biopsy was positive for GvHD. My GvHD biopsies usually come back as inconclusive. I have several keloid scars on my back from previous multiple skin punches testing for this little monster. The lung biopsy was inconclusive. Dr. K. is proceeding as though it's GvHD since my breathing has eased on steroids. She's also keeping me on a few steroids while the lung cultures continue to grow. Who knew that it could take over a month for a fungus to show up in a petri-dish?

As it stands, the plan is to start a steroid taper. I'll alternate 64 mg of medrol with 32 mg every other day. 2 more days of IV cancidas, then I will switch over to voriconazole, which comes as a pill. My PICC line will remain until Dr. K. can be sure that the switch doesn't irritate my liver. The rest of my 2 page med list remains the same.

For those that would like to know, here's my blood work:

WBC: 18.2 K/UL <--------- No worries, that's high due to steroids

RBC: 4.34 M/UL

HGB: 13.9 G/DL

PLT: 203 K/UL <---------- The platelet crash is in full effect. Thanks, Medrol.

ANC: 16.47 K/UL <--------- Medrol

ALC: 0.87 K/UL<------ Last week this was high, now it's low.

AMC: 0.56 K/UL

No eosinophils detected. That's most definitely due to steroids.

Alkaline Phosphatase: 103 IU/L <--------- NORMAL

LDH: 866 IU/L <-------- So close!

Alanine Aminotransferase: 88 IU/L <------ Suddenly, my liver enzymes are like the little engine that could, but got stuck at customs.

My APN was impressed by my glucose results. 135 mg/dL. She was expecting something over 200 mg/dL due to steroids. Most transplant patients become diabetic for a period. I was last go around. I have been vigilant about the snacking. If I can restrain myself, I limit myself to fruit. I've had more than my share of Halloween candy, though. I like to think that I've managed the collateral damage. The excessive treadmill time may also be helping. I still have my old glucose meter and a box of testing strips, just in case. If I must, I'll start giving myself insulin injections, again.

I've been ordered to see my local oncologist next week for more blood work.

All in all, things are looking good.

Quick & Dirty

2010-10-19T06:35:00.003-06:00

The steroids are making me feel like a hummingbird high on cocaine, and so it's been difficult for me to sit down to blog.

I saw my local oncologist last Wednesday for some blood-work requested by my transplant doctor in Houston. According to Dr. B.'s cell counter, things look good. Bearing in mind that numbers are relative to the sensitivity and age of the equipment, there has still been an improvement. My liver numbers were down. My platelets are also dropping, which is due to the steroids. Lymphocytes are up, which has Chris worried. Dr. B. reassured him that it's not significant of anything. I recall them being up when I was last on steroids, so I'm not worried.

My lung function is better and I am coughing less. My brain is constantly vibrating and it's nearly impossible for me to stay focused on one thing for long. Sleep is something that I miss. I can generally stay asleep for between 2 and 4 hours, and then I'm wide awake and looking for something to eat. I do not love this aspect of steroids.

This time around, I've decided to try an experiment. As most of you know, long-term steroid use can lead to avascular necrosis and a host of other life-long health issues. I managed to dodge all bullets last time and I am well aware of how lucky I am for it. In transplant patients, the AVN usually attacks the hips. Your bones die. This means constant pain and the need for replacement surgeries. I know AVN sufferers who have it in most all of their joints. It terrifies me.

Steroids also lead to muscle weakness, especially in the legs. Taking these two boogie men into consideration, I've decided to hit the treadmill, hard. Walking helps with bone density and circulation. I do it at the maximum incline to really work my legs. Thus far, I've managed between 60-102 minutes each day. I don't want AVN. I don't know that this will help, but I have to do something.

An added bonus to spending so much time on the treadmill is that it helps to burn off some of the excessive energy. I feel less manic after a long session of mindless walking. I also feel better about the late night queso binges. So far, I've managed to keep my weight stable. Last time on steroids I gained something like 24 pounds. Not this time if I can help it.

The lower part of my face is beginning to fill out thanks to the methylpred. I should look like a crazy Disney character in about 3 weeks. I'll post the picture I took of myself after the first week once I remember where it is.

In other news, Chris and I have been working on Halloween decorations. We made tombstones last weekend, and I must say they came out pretty well. Amazing what you can do with foam insulation, a dremel tool, and some paint. Chris is the architect of this endeavor. I'm supplying the painting instructions and manual labor. It's been a lot of fun, and I'm just so happy to be able to do this with Chris.

Here are a few pictures that I had on my phone. I'm charging Chris with posting the rest of the shots. You all may want to harass him about it to be sure it happens.

I'm thinking of flocking the spiderwebs and leaving them up through January. They were that persnickety to decorate with.

I still marvel at how talented Chris is. He free-handed the design of the tombstones.

Graves at night. There are several finishing touches that will go in the weekend of Halloween. Chris's dad carved gears for him to use in order to make an animatronic ghost. Artistic talent seems to run in the family. The gears are beautiful and it seems a shame that they're going to be hidden inside the mechanism that makes the ghost wave its arms.
A little daylight. Close-ups of the tombstones will be forthcoming. It's only a matter of getting me to sit still long enough to do it.

When it's not Cancer

2010-10-10T10:06:00.002-06:00

Upon first being diagnosed with cancer, my world simply stopped for the barest second and I could feel something shift and click in my mind. Every-day Ann traded places with a woman that I'd never relied on and that part of me that is a survivor emerged. My vision in that moment was so intently trained on my doctor's discomfort at delivering a cancer diagnosis to a perfect stranger only a few years younger than himself. I could hear those traitorous cloned white-blood cells rushing past my ears as my heart exploded with every beat. I had cancer.

I don't have cancer anymore. Haven't since achieving second remission in July 2008. Now I must live my life in that moment after cancer. Knowing that the genetic defect that lead to the first cloned white-blood cell may lurk deep within my bones is cold comfort.

I don't have cancer. I am living with the aftermath of treatment. My new immune system still doesn't like the decor of its new vessel and has decided to do a little redecorating. It's been working on my eyes and skin for some time now. Lucky for me, the drugs I've been using to keep Ann 3.0 under control worked up until a few weeks ago. The immune system has decided that my lungs, liver, eyes, skin, mouth, and fascia have got to go. The only way it can do this is to kill them as it would an infection. It hasn't quite keyed into the fact that we're all one and the same.

My breathing became tricky and my lung capacity reduced to 59%. Walking to class felt like running a mile. My liver became swollen and my abdomen became uncomfortable. All of the other nuisances magnified ten fold.

I have missed a lot of school for medical reasons. I had to see THE SPECIALISTS and have a liver and lung biopsy. Post transplant, when you have to see a specialist, you're going to see a doctor who deals with things they don't usually go over in medical school. I had three weighing in along with my transplant specialist. They all cautiously agreed that I had GvHD.

I'm now taking 64mg of methylprednisolone in addition to tacrolimus to try and pull the immune system back into line. My immune system is back in the toilet. I must now take three antibiotics, and antiviral, and an IV anti-fungal.

I was surprised with the news that a new PICC line would be inserted into my arm on Wednesday in order to be able to facilitate infusions. I had a little break-down after it was inserted. It all had to do with being frustrated. Frustrated that I have a tube sewn into my arm; frustrated that the IV nurse who did the procedure wouldn't write orders for dressing kits or heparin unless Chris took the training class to get re-certified. Chris has given me infusions and changed my dressings from the beginning. He's taken the class three times. He wasn't with me because I was just supposed to be having a check-up. There'd been no mention of a catheter insertion. It all coalesced to overwhelm me and I ended up crying in front of my transplant nurse. I don't cry in front of my doctors and nurses. I do cry when I get mad or frustrated. I hate the fact.

My nurse was great as was a former nurse who tracked me down to give me a hug. Chris and I returned to MD Anderson yesterday so he could take the class yet a fourth time. He wasn't able to challenge for a demonstration since the clinic was so short staffed. A local company is delivering heparin and dressing changes, so we should be covered. Chris can do this in his sleep. I can walk you through it step by step, as well. The only reason I can't do it for myself is that the line is in my upper right arm and I am right handed.

It's been a very emotional two weeks. My transplant doctor encouraged me to withdraw from school. The steroids wreak havoc on my body and with my moods and academic ability. I have reached a compromise. I dropped down to two classes. The two professors teaching know exactly what's going on and have shown me a lot of kindness as far as assignments and exams go.

I'm disappointed.

I also continue to learn the lessons that come when it's not cancer.

Just because someone you know has been treated for cancer, it doesn't mean that it's ever over. They are struggling with the life that comes after treatment; as a result of treatment. Don't think your friend/acquaintance is finished and has hit the ground running. Above all else, don't tell them that you had no idea that chemotherapy wouldn't be the end of it.

I have heard all of these things. Most of you have as well. I resist the urge to unleash on the most clueless of my acquaintances who continue to tell me that they had no idea regardless of the number of times I tell them that I'm in this for the rest of my life.

Life doesn't stop, it only takes a different fork in the road. The quality of my life is good. This latest set back will only be a nuisance for me, because I refuse to let it become something more. I will finish out this semester. I will take two classes next semester. I will continue to be available to anyone who wants to talk about cancer and the treatment process. I will hold hands and give out hugs and offer comfort. Because I can.

Set Back

2010-10-06T19:52:00.001-06:00

Ann complained of being "a little short of breath" one day while walking to class last week and those few words have proven to be like a small snow ball rolling down an alpine mountain side. Pressing question was "how tall is the mountain and how big will the snow ball get"?

Well that and the chest x-ray that MDA took last week, which showed a couple more fluffy infiltrates on it that weren't around on a similar one from a year ago. With that MDA went into overdrive looking into what the source of the breathlessness (dyspnea) and fluffy looking wisps are. Principally the cause was one of the following: Lymphoma, Extramedullary ALL, Aspergillosis (or some other equally unattractive fungal variant), Pneumonia, or GvHD.

One open lung lung biopsy, liver biopsy, lots of blood work and 5 trips to Houston later and we have an answer - chronic GvHD of the Lung. This is an add on to the skin, eye, mouth and liver manifestations that have already flared up.

So good news here is that in general GvHD is good. It is much (very much) preferable to Leukemia and Dr. K believes that Ann's new case is relatively mild. The treatment is Steroids, and Ann has had a fast reaction to them in the past. So the steroid pulse may only last a couple of weeks or months.

Unfortunately there is a down side. Puffiness, low immune system, anti-biotics, anti-funguals and a few other things that Ann will probably have lots more to talk about. That’s a subtle way of saying she's going to want to vent...lots and I'm not going to take that away from her.

For my part, I'm just grateful that she's still here for me to love.

The places you will go

2010-09-30T20:12:00.000-06:00

I've finally learned something. Not all hospitals are created equally. Duh. I really already knew this, but it really hit home when I saw my numbers from Wednesday's blood work at MDA. Did I mention that I was in Houston?

The liver numbers from MDA weren't very changed from the last set taken in Houston. This means that the cell counter at my local hospital isn't quite as sensitive, because the numbers were different. Live and learn.

I saw a pulmonary specialist Wednesday morning and she didn't tell me what I wanted to hear. She showed me a few X-rays of my chest. The lungs should be nice and black in an X-ray. My lungs have a fine haze of spider webs snaking across them. The doctor didn't like what she saw. She's an expert in GvHD of the lungs and informed us that my picture didn't fit the typical profile. She wasn't ruling anything out, though. She ordered a CT scan for that day. She also ordered a bronchoscopy, which couldn't be performed until Thursday.

By the time I was finished with the liver ultrasound that my transplant doctor had already scheduled for Wednesday and checked in for the CT scan, it was after 3. I didn't get out of the scan until after 9. Chris and I had to get a hotel room, which we weren't prepared to do.

Dr. K. advised us to book the room through Friday since she wanted a liver biopsy performed as well.

I had the bronchoscopy today. I also had a last minute lung biopsy while we were at it thanks to the results of the CT scan. I feel like I've been punched in the throat from both the inside and out. Essentially, a small, flexible scope was inserted up my right nostril and into my lung. I was warned that I might wake myself because of coughing. I did. It was brutal. The team was great, though.

They'd hoped to get five tissue samples for the lung biopsy. They had to stop at two. When they were harvesting tissue, they accidentally cut into one of the lesions causing the problems in my lungs and I started bleeding. They didn't want to risk taking any more chances. As a bonus, when they were pulling up that second sample, a third little nugget came up with it.

I was sent for X-rays after this and the doctor that performed the lung biopsy sat down with me to explain my CT scan. She was lovely and very apologetic for the whole bleeding thing. It happens. In her words, there are fluffy looking infiltrates in my lungs. I saw the X-rays and the CT. There certainly are. While they were fishing around in there, they also did a lung wash so that they could do a culture. They aren't ruling anything out. I might know something by the middle of next week.

The liver biopsy couldn't be scheduled for tomorrow, so Chris and I elected to come home. The doctor warned me that the biopsied lung could collapse up to 24 hours after the procedure and that I need to take it really easy. This means no school for me tomorrow. I'm missing another exam.

I have to return to Houston for a few days to see my transplant doctor and have the liver biopsy. I'm laying low until then.

Monday Rush

2010-09-27T12:09:00.002-06:00

I have a small break between classes, so here's a quick update for you:

The nurse from my local oncologist's office just called with my blood work results. I'll cut to the chase--LDH: 269 IU/L; ALT: 338 IU/L; Alk Phos: 171 IU/L. My LDH has improved dramatically and is once again in the normal range. I will tell you all what I've been told by countless doctors. Your LDH can be elevated for a thousand different reasons. The numbers I'm more concerned with are the ALT and Alk Phos. They've improved a little. They are still in the high range, especially the ALT. It was more than eight times the high end of normal last Wednesday. It is now six times higher than the high end of normal.

This could still mean that steroids are in my very near future. I haven't heard back from my transplant doctor in Houston yet. She may not receive the numbers until the end of the day, depending on when they check the fax machine. All I do know is that if it walks like a duck, and it quacks like a duck, it could very well be a zebra.

The only other thing that I have to report is a brief episode this morning when I found myself a little short of breath. I was walking to class and realized that I was getting winded and had to slow myself down. I ended up using the elevator instead of the stairs and had a brief coughing fit while I tried to catch my breath.

I didn't see any ducks or zebras, so I don't know what to make of it.

Cautiously Optimistic

2010-09-26T08:35:00.002-06:00

Thursday, it became obvious to me that my liver was indeed swollen. My abdomen was a bit distended on the right side and I could feel the organ pushing against my lower rib cage. Sitting became mildly uncomfortable as it felt like something that shouldn't have been bending was getting folded. Since I had to sit through classes on Thursday and Friday, I compensated by fidgeting in my seat.

By Friday night, I could see that the swelling was starting to recede. My abdomen is still slightly swollen and I can still feel the offending organ pushing against my rib cage. As for my lungs, I hadn't noticed that my capacity was diminished in the first place and I still can't detect a difference.

Monday is going to be a marathon of a day for me. I've got two classes in the morning and a make-up exam at 10:30. As soon as I finish the test, I have to hustle across town to have blood work done. I'll have my fingers crossed that traffic will be light and the line to get stuck by a phlebotomist will be short. As soon as that's over, I'll have just enough time to get back to campus for my last class of the day. Part two of the statics exam is Tuesday, so no sleep for me.

Major and Minor Irritants

2010-09-23T15:40:00.002-06:00

I had my 2 year check-up at MDA yesterday and things did not go as I had planned. Lest you worry unnecessarily, as far as I know, I'm still cancer-free. I had a bone marrow biopsy done as part of the standard protocol, but as most of you know, the results take time to decipher. I should know the preliminaries some time next week.

As part of the 2 year check-up, a pulmonary function test was administered. I failed. The last PFT I took was six months ago and my lungs were functioning at 90%, which isn't bad considering the beating my body has taken. This go around, my lung function is 60%. The research nurse in charge of the SCT survivor study revealed my failure to me after quizzing me about having a cold or some other funk. I haven't had a cold and don't have a reason for failing the test. Chris has mentioned that I've been coughing in my sleep. All concerned think I may have GvHD of the lungs.

That's not something that I was prepared to hear.

It doesn't really get better.

My liver enzymes are up, again. Not to be outdone by my stealthy lungs, my LFTs are WAY up. Signs point to GvHD of the liver.

Wasn't ready to hear that, either.

Dr. K. ran down a list of symptoms that I should be displaying as a result of the wonky lung and liver issues. I'm asymptomatic, which is leaving the transplant team stumped. Those of you who have been along for the ride since the beginning know that I was essentially asymptomatic when I was first diagnosed with leukemia. They had to draw blood to nail it down.

The good news is that if I have GvHD, then I don't have leukemia. The bad news is that I probably have GvHD of the lungs and liver. That's bad stuff. I've spent today in a relatively foul mood because I've been hosting a little pity party.

I would have stayed in my pajamas moping around the house had it not been for part one of a two-part structures exam. That's right, I took an exam today after spending the entire day either getting poked, harvested, or on the road. I am an obstinate glutton for punishment.

The possible diagnosis of major organ GvHD is the major irritant in my life right now. I'm only irritated because I feel that my body is conspiring to throw me off of my schedule. I am determined to see this college thing through. I'm too close to finishing to shelve it right now. I'm irritated because I feel like I've started yet another life-project only to have the proverbial other shoe drop. Size 200 shoes on my size 8 head. If push comes to shove, then of course, my health comes first.

Dr. K. doubled my tacrolimus dose in the hopes that the immunosuppressive might bring my misbehaving immune system back into line. I have to see my local oncologist Monday to have blood drawn. They'll be checking my liver enzymes. If they don't come down at least a little, then I'll have to have another liver biopsy. Winner, winner, chicken dinner.

If the liver function starts to trend in the right direction with the increase in tacrolimus, then I'll have an ultrasound of the liver, instead. I'd much prefer this option.

Since I failed yesterday's PFT, then I have to have another one in the very near future, in addition to seeing a pulmonary specialist. Lucky me, I get to see the doctor that runs the PFT lab. If my lung function is once again sub-par, then I know that a lung biopsy will also be in my future. Call it a strong hunch.

If all of the poo-poo boxes get checked off, then the next step will be to start taking steroids again. I'll be taking something like 66 mg a day. That just pisses me off. If you're relatively new to my adventure, then you can see why in the archives for late 2008 through early 2009. I become a monster on steroids and have a very strong Cushing's reaction. And my bones are fragile enough and there's the whole avascular necrosis thing you have to worry about. Thanks, but I have enough on my plate.

The minor irritant in my life is that I will have to miss more classes to take care of all of this. It's not a big deal. I know this. My professors have been very understanding. I'm just irritated because this is further physical proof of how I'm not normal. It is a gnat in the eye of my existence. I will get over it. I will not let it bother me after today.

For those that like to know, here are my numbers:

WBC: 8.0 K/UL

RBC: 4.32 K/UL

PLT: 340 K/UL

ANC: 5.44 K/UL

ALC: 1.02 K/UL

AEC: 0.62 <---------This is high and is a classic indicator for GvHD or parasite infestation, take your pick.

Ferritin: 3695 NG/ML <---------High, again. This is a measure of the iron stored in your liver. Normal is 10-291 NG/ML. Transplant patients have increased ferritin levels as a result of all of the blood products we need in order to survive during treatment.

Alkaline Phosphatase: 276 IU/L <---------Normal is 38-126 IU/L

LDH: 983 IU/L <--------Arrrghhhhhh! Normal is 313-618 IU/L

Alanine Aminotransferase: 431 IU/L <--------Really? Normal is 7-56 IU/L. To know me in real life is to know that I'm cracking wise about these misbehaving measurements. Right about now, my friends Tina and Heather are cracking up about my nonsensical shenanigans.

I really am fine about everything. I just needed a day to walk around in a snit about things. I know all of these things are treatable and my amazing medical team is on top of it. I'll keep everyone informed of the next step in diagnosing the problem. Thanks for reading my rant and holding my hand.

Hello

2010-09-20T05:50:00.002-06:00

Just a quick word to let you all know that I'm still here. I'm swamped with exams and papers this week, so this could very well be the only time I pop in. Chris celebrated his birthday last Friday. :)

Cuteness

2010-09-12T17:19:00.002-06:00

Thought I'd leave you all with something to look at when you pop in. I found some cute iron-on transfers the other day and decided to get crafty. I've customized some onesies for my nephew who's due in November. Here's my favorite one:

Busywork

2010-09-12T11:03:00.002-06:00

Physically going back to school has been an adjustment. No surprise there, but it's been challenging in a few ways that I hadn't fully considered when I made the decision to try my luck. I expected to be tired from the physical act of walking on campus with an over-sized bag strapped to my back. I suspected my skin would take a beating from the increased sun exposure.

The thing I didn't count on was allergies. The bulk of my classes take place in a building that was formerly dominated by the business school, but is now being transitioned over to the school of engineering. The business school is getting a brand new building next door in what was formerly a commuter parking lot. Anybody making the connection, yet?

There's major construction a few feet from where I walk five days a week. This means a constant parade of heavy equipment stirring up dust and shaking the many oak trees that line the sidewalk. ALLERGIES!

Chris tells me that I've been coughing in my sleep. I'm not surprised with all of the environmental particles I've been inhaling during the day. Let's not forget all of the chalk dust in the classrooms and whatever else lurks in the seat cushions of the stadium seats. I'm hopeful that my system will adjust and not be overwhelmed. The last thing I want is to end up in the hospital with a respiratory infection.

Classes have been going well. For those that are interested, I'm taking: management, highway construction, structures and mechanics (engineering/physics), construction business administration, engineering economy (finance). Yes, I have lost my mind. I had to take most of the technical classes this semester since they're on the critical path of major classes and segue into the next batch of critical classes. If I'd split them between this semester and the next, I would have added an extra year to school.

I have an appointment in Houston for my 2 year check-up in a few weeks. I'll have a bone marrow biopsy/aspiration and see my transplant doctor. Coincidentally, I have a management exam and an ethics paper due on the same day. The first part of a structures exam is also scheduled for the next day. As an aside, if an exam has to be scheduled to take place during two consecutive class periods, shouldn't that be an indication to the professor that there's too much material on the test? Can't forget to mention the first half of a business plan due the same week.

Chris suggested I reschedule the appointment in Houston. I should have from a logistics stand-point, but emotionally, I couldn't do it. I'd rather take a slew of make-up exams and turn the paper in early. I need to follow through with the MDA appointment for my peace of mind. The test to determine minimal residual disease takes weeks to return a result and I'd rather have the results sooner rather than later.

I'll pop in next week to let you all know I'm still lurking.

Transplant birthdays

2010-09-05T10:02:00.002-06:00

Monday, September 6, marks two years since I received transplant number two. I can't remember number two with the same clarity as number one. Perhaps that's due to some bizarre been-there-done-that ennui that comes with prolonged treatments. Up until that point, I'd had so many chemotherapy sessions through my CVC and injected intrathecally into my spine. There was a bout with PTLD which brought more chemo and more scans and more treatment. I've lost count of the number of times I had to go to the ER in the middle of the night because of fevers or bone pain. I couldn't tell you the number of bone marrow aspirations and biopsies I've had. Lumbar punctures? I've had more than a few.

There are scars: one on each side of my chest to commemorate the multiple CVCs, one on each bicep to mark the existence of multiple PICC lines, track marks on my arms from the myriad blood draws, a cluster of divots low on my spine from so many lumbar punctures. The backs of my hips hurt when pressed thanks to all of the bone marrow samples and bone fragments I've had removed to be tested for minimal residual disease.

I'm not alone in all of this. I've got friends who are also doing this for a second time or have done it multiple times. We have all heard some permutation of the phrase, "I'm sorry, the leukemia is back." We have all choked back some horrible miasma of grief/anger/rage/disbelief. We have all fought and continue to fight.

My life has been touched by the resilience we all share. Each of us struggles in our own way and yet every day, we resolve to put on our game faces and forge ahead for ourselves or our loved ones or just to spite the son of a bitch that is cancer.

On Monday, I will be two. I will get to do all of the things that I'd thought lost to me that horrible day in July when I was re-admitted to MDA. I will be grateful for the dust bunnies under the couch and the crazy sago palm in the front yard. I will relish the obscene amount of reading that must be done for class. I will tell Chris that I love him. I will be thankful for Dana.

So many people worked so hard to save my life, twice. Dana sacrificed to give me this second chance at life and I will be forever grateful. Chris put his life on hold to nurse me through this. So many people helped us in a plethora of ways and without all of you, we wouldn't have been able to do it.

On Monday, I plan on being as mundane as possible. I will do homework and eat leftovers. I will ignore the army of dust bunnies mounting an attack on all horizontal surfaces. I will allow the cats to bully me into giving them extra treats and I will hold my husband's hand. I will smile and be grateful for the many friends I have made, but not met because of this adventure. I will be thankful for those who are selfless enough to become members of the bone marrow registry. I will be grateful for all of you who continue to read the blog.

Because I want to.

Because I can.

Week 1

2010-08-27T19:16:00.003-06:00

The first week of classes is behind me and I am exhausted. I know I throw that word around a lot, but once you've gone through any type of major illness, exhausted becomes a regular part of your vocabulary. Leading up to the first day of class, I was much more active than I have been in the nearly four years since this all began.

This week has challenged me on a new level. I'm now attempting a level of activity that's outside of my comfort zone. I'm attempting to play normal with the other kids.

The LSU campus is enormous and open and peppered with a confusing assortment of old buildings. As a student, you will do a lot of walking. I've been fortunate this semester. Most of my classes are confined to the engineering building. Unfortunately, I still get more direct sun than I'd like.

I was able to get a parking permit that would allow me to park closer to my classes, thanks to my very understanding BR oncologist. He's an alum and remembered what a nightmare commuter parking at LSU can be. He was worried about the sun exposure setting off my GvHD.

I've been religious about wearing three different sunblocks, but I'm still having GvHD issues. My cheeks and nose are covered in rashes and scabs on a daily basis. It itches. There's a spreading rash on my left forearm that looks a bit like a sunburn. It's sensitive to the touch and feels very much like a sunburn. My feet, hands, and calves have been cramping off and on throughout each day. It makes concentrating in class something of a game. At home, I can get up and walk around to stretch the muscles. I can't do the same during a lecture.

As far as I'm concerned, these are all very minor nuisances in the big scheme of things. If a little discomfort is the price I have to pay for normalcy, then bring it on. I'm happy to be able to do it.

I've already got several assignments due next week, so blogging is going to be tough. I'm going to do my best to stick to my once-a-week promise. If I get a little behind, don't worry. Sometimes, no news really is good news.

YIPPPEEEE!

2010-08-23T19:35:00.003-06:00

The grade for my marketing class just posted: A

Thank you, Dr. Karam!!!

I just had to post since I'm sure Chris is getting sick of me running around the house with my arms in the air, yelling, "YAY!"

For the record: He's proud of me and wouldn't mind if I jogged down the street doing the same thing. :)

Another first

2010-08-23T17:44:00.002-06:00

I have survived my first day of classes and am stealing a few moments to update the blog. It's just as I remembered it, except the familiar faces from what would have been my graduating class have been replaced with a whole new cast of characters. I was pleasantly surprised to find that I had two classes with two professors from my last semester at LSU. One of them greeted me by name as he handed me a syllabus. It was a lovely, normal moment.

I have two classes tomorrow and if they're at all like the three that I had today, I know that I will have a tremendous amount of reading ahead of me. I've already had to speak to two of my instructors regarding schedule conflicts. It seems that my two year MDA check-up coincides with an exam and an ethics paper. It will all work out, so I'm not going to waste time worrying about it.

Now, if you all will excuse me, I have a few books to crack.

Where do I begin?

2010-08-19T18:54:00.001-06:00

I have taken the final exam of my marketing class and am happy to be done. In January, when I first decided to attempt this undertaking, I had legitimate concerns regarding my ability. I'd had Hyper C-Vad, modified Hyper C-Vad with L-Asperiganase, Rituxan, intrathecal chemotherapy, and two courses of consolidation chemotherapy. I have had my immune system burned out of my marrow twice. I have had so many drugs and combinations of toxins that I marvel at my ability to function some days.

My doctors warned me that I would have cognitive issues. I would need to learn how to process information differently. I was warned that I would have issues handling stress.

All true.

I've discovered that my academic effort must be tripled in order for me to do an acceptable level of work. By acceptable, I mean "passing". I used to be the kid that could breeze through school with a minimum of effort. Not so much anymore.

I've learned that I need to rely on flashcards and repetitive drills. Chris plays an integral role in all of this. He holds my hand and encourages me to approach problems from multiple angles. It's been largely due to his encouragement that I managed to get through this.

I will begin physically attending classes at LSU on Monday. I'm taking five classes. The very thought of it makes my heart race. The anxiety is building.

Checking in

2010-08-07T09:54:00.002-06:00

No changes here, which is a good thing. I couldn't let the blog slide until 8/20. It didn't feel right. I've handed in the final assignment for my marketing class and am currently reviewing for the last exam. I start physically attending classes two weeks from Monday, and the butterflies are fluttering. I'll check in once I've taken the last marketing test.

Thoughts on steps without me

2010-07-24T14:20:00.002-06:00

I admit my blogging has been exiguous. Mostly, this is because I've been working quite hard at my job now that I've been transferred to the corporate office, but also because there is less of the sort of thing going on that lead to the creation of this blog. That's a good thing, and it has led to things like Ann's solo trip to Houston.

Ann's trip to MDA without me has caused a breakthrough in my thinking. Each journey there is like a big-event and is proceeded by (for me at least) a week's worth of humorless worry and crushing anxiety. So much depends on those trips that I have long given up on the idea of routine exams and I made sure that I was there each time so I could hold her hand.

Ann and I spent every day on the 8th floor of the Clark Clinic at MDA for what seemed like years. Without too much difficulty I can remember with a voluminous mix of despair and dread everything we fought so hard to overcome while there: induction, blindness, wheelchairs, having no home, desperate donor searches, insurance denials, transplant, relapse and transplant again.

I could have taken vacation or sick time to go with her, but I didn't. I could have begged off of my reports and deadlines until the end of the week, but I didn't. I don't think I would have lost my job. So why did I let her go alone this time? Why did I allow her to go and face the beast without even moral support?

My sneaking suspicion is because I needed to, and she needed me to let go just as badly. Which is not to say that I don't feel one iota less guilty about not being there.

Life pushes toward its normal equilibrium in the absence of a crisis. Feeling scared, anxious, or guilty are just bi-products of that process and we can't control it. Ann needed to be able to do something big without support. I needed to focus on work and put my anxiety away. And she needed me to do this as well.

Driving solo

2010-07-22T08:30:00.002-06:00

I had a GvHD check-up in Houston yesterday, and I think my transplant doc's exclamation, "Has it already been a month?" pretty much sums it all up. I have been in a doctor's office every two weeks like clockwork. It's either been for GvHD or some pedestrian crud.

Taking 0.5mg of tacrolimus twice a day seems to have done the trick. My GvHD is back in line with where it was before the flare-up: just enough to be very mildly irritating, but not life-threatening. I still need to use the steroid mouth-rinse, because the tissue is still sensitive. I get a blister on the left side off and on.

Chris was swamped at work and so I made the trek alone. The drive was pleasant mostly thanks to my sweet hubbie's thoughtfulness. He assembled a music play list containing my favorite band and gassed up the car the night before.

Five hours of driving, four hours of MDA, and then a little over five hours of driving home. Exhausting.

Here are the numbers for those that are interested:

WBC: 7.9 K/UL

RBC: 4.07 M/UL (WOO-HOO!)

HGB: 12.8 G/DL

PLT: 362 K/UL

ANC: 5.34 K/UL

ALC: 1.28 K/UL

AMC: 0.92 K/UL

AEC: 0.29 K/UL

My tacro level is less than the measurable amount, which is fine, because it's keeping things in line. Dr. K. ordered an immunity panel which returned in the low end of normal, even on tacrolimus. This is a good thing and shows that the killer T-cells are theoretically capable of doing the job, so to speak.

As for me, I had a few curve-balls to throw at Dr. K. The first on being the laundry list of vaccinations LSU wants me to have before they'll allow me to attend classes. Dr. K. had a letter drafted explaining why I can't have them and explained that due to my compromised immunity, there is a very large chance that getting these vaccines would end in a reactivation of these viruses which would lead to some seriously bad stuff. The second requirement LSU has for me is a PPD test to show whether I've ever come into contact with TB. They want this because: A) I was born in Asia, B) I have had leukemia, and C) I take immunosuppressants. MDA doesn't normally do this test in-house. It's a skin test that must be read 48 hours after giving it.

Since it wasn't a practical proposition to have it done in Houston, I'm going to see if my local oncologist can do it. If he can't, I'll find someone. I also need to see about getting a temporary parking pass that allows me to park closer to classes. I spent 15 minutes in the sun walking from my car to a test on campus and came away with my forehead, nose, and cheeks covered in small blisters, scabs, and pustules. It itches and is uncomfortable. I was wearing a dedicated sunblock and two other products containing sunscreen. I don't know what doing that everyday would do to me.

My final curve-ball for Dr. K. came in the form of a question: Have you ever had or heard of a female patient post transplant being able to carry a pregnancy to term? Due to the excessive chemo through two transplants, I am sterile. I've been seeing a lot of sensational new articles or documentaries about women in their sixties and seventies being able to conceive and give birth thanks to donor eggs and in-vitro fertilization. If they can do it, why can't I?

Dr. K. explained that she's never had a patient post-transplant do it, but that there is plenty of data that shows that it's possible and does happen. She also explained that she can't see any reason why I couldn't do the same with a donor egg. She cautioned me to wait until I was cancer free for five years. The magical five year mark is when the chance of relapse plateaus. I understand her caution and I also understand that I'll have to see a fertility doctor in order to determine whether this little scheme is even feasible. I'll put it on the back burner while I concentrate on finishing school.

As for that, I have three more lessons to finish and one more test to take in order to be done with my marketing class. I'm up against a hard deadline, so things will be quiet here until the last week of August. If something is wrong, I will post. If something deserves celebration, I will post. If you don't hear from me until 8/21, then know everything is status quo.

Home

2010-07-11T20:47:00.009-06:00

Chris and I have been home for the last week, and it feels like we've been running nonstop since stepping off of the last plane. I won't bore you with the minutiae of our travels. We were able to see most of my family during the short four days we were in California and it was a very special time that we'll cherish.

My grandmother had a kidney infection, kidney stones, and blood clots. Due to her age, the doctors were hesitant to operate on her. Nonetheless, they did, and I am grateful. She'd been home for less than two weeks when we arrived. It's been six years since I saw her last and we've all been through so much. She's not as mobile as she used to be because of arthritis and has to use a wheel-chair to get around. It hasn't seemed to slow her down.

This trip has given me so much to write about, and yet I'm finding it to be next to impossible to put anything down. Maybe later, when I've had more time to sort through things. Until then, I'll leave you with some pictures.

My Grandmother:

Aunt Kim and my brother, John

John and his wife, Mandie

Aunt Lang, Mandie, John, Aunt Kim, and me

My Aunt Lang hosted two barbecues while we were in California.

My Uncle Toi, Lang's husband, on the far left, and my mother on the far right.

My fabulous grandmother holding court.

Mandie and John

Toi, my cousin Kiet, and his mother, my Aunt: Ma Hai

From the left: My Uncle Tony(Kim's husband), Kim, Lang, and Toi

My cousin Richie, Kim's youngest son

My cousin Brian, his dad and my Uncle Loi, Loi's wife Bonnie

Quite a family resemblance

These last two pictures were taken yesterday in Baton Rouge. Chris and I attended a birthday party for our friend Van's daughter, Rosalyn Grace. I've known Van for years and was able to attend his wedding in 2008, two months before I relapsed. Yesterday, I met Rosalyn Grace for the first time. It was yet another first that I wondered if I'd ever get the chance to experience.

Van

Rosalyn Grace. She's a thousand times cuter in person and has the most soulful brown eyes. It's hard not to fall in love with her.

Long weekend

2010-06-30T08:20:00.003-06:00

My 91 year old grandmother had a medical scare a few weeks ago and ended up in the hospital for a few days. I haven't seen her since having been diagnosed with leukemia close to four years ago. She speaks very limited English and the few Vietnamese words I know either involve eating or cursing, but we muddle along.

I got clearance from my doctor to fly out for a visit. We'll only be there for the weekend since Chris needs to get back to work.

Family is a part of my life that is complex and convoluted. Sure, you say, you and everyone else. I know that I'm not alone in this. I only mention it because even now I'm having difficulty writing about the trip. I'll post pictures when we get back, but as for a recap of the visit, I can't make any promises.

MDA follow-up

2010-06-24T07:25:00.002-06:00

Yesterday was yet another day in Houston, but this time it was expected and has been on the books for three months. It was supposed to be my 21 month check-up. Thanks to the GvHD flare-up two weeks ago, it was a follow-up to see how the medrol and prograf had affected the situation.

The itching that had propelled me into MDA two weeks ago has become very tolerable. I still have moments of insane scratching, but the episodes are happening with much less frequency. I thought the GvHD in my mouth was getting worse, but now I suspect I forgot to use the steroid mouthwash one day. My gums and the lining of my mouth were swollen and sore and I didn't get much of anything accomplished that day due to the distracting nature of constantly feeling like gremlins were rubbing the tender tissues with sandpaper. I will try to never forget the dexamethasone rinse again.

Spicy food consumption is way down in the Gregory household. Vanilla ice-cream intake is up. The ice-cream is nice and bland and the temperature soothes the inflamed tissues. That's my story and I'm sticking to it.

Dr. K. was non-plussed by this past weekend's mystery illness. She said the fact that some of my blood counts were elevated accounted for it. She also authorized the next round of vaccinations. Five shots. Two arms. I'm still sore.

As Dr. K. sorted through the mystery that is my GvHD, she speculated that I'm gearing up for a big flare-up. No one wants that, especially me. It means discomfort and months of steroids. No thanks. She's increasing the Prograf to 1mg per day. I'll stay on it for three to six months, then we'll see about tapering off. I won't have to start taking antivirals or antibiotics since the drug will only be maintained at homeopathic levels in my system. I will be more susceptible to illness, so I'll take precautions.

I also saw the dermatologist who specializes in skin GvHD. She took one look at me and said, "We don't need to do any biopsies, I can see the remnants of the rashes." Hooray for that. She wants me to use steroid cream in place of the tacrolimus ointment, but I do have the option to use the one that I find works best. Dr. H. also took a look at a mole that appeared on the top of my right foot after the first transplant. Apparently, it happens. She wasn't worried about it three years ago. It's a little bigger these days and since my dad struggled with skin cancer, I wanted to be safe. She still thinks it's benign, but she had pictures taken for my file.

As for the numbers, here you go:

WBC: 7.8 K/UL (4.0-11.0 K/UL)

RBC: 3.99 M/UL (4.00-5.50 M/UL)

HGB: 12.5 G/DL (12.0-16.0 G/DL)

PLT: 282 K/UL (140-440 K/UL)

ANC: 5.28 K/UL (1.70-7.30 K/UL)

ALC: 1.11 K/UL (1.00-4.80 K/UL)

AMC: 1.22 K/UL (0.08-0.70 K/UL) This reading accounts for the fever over the weekend.

LDH: 612 IU/L (313-618 IU/L)

Alkaline Phosphatase: 183 IU/L (38-126 IU/L)

Alanine Aminotransferase: 153 IU/L (7-56 IU/L)

As you can see, my liver is still not behaving. It is what it is and we'll deal with one thing at a time. My thyroid levels are now normal thanks to the Synthroid prescription. I can feel a difference and I'm all the happier for it.

I need to see my local doctor in two weeks to have my Prograf levels tested. July means another trip to MDA to check my progress with graft versus host disease. Until then, it's business as usual around here.

Ill equals normal

2010-06-20T10:18:00.003-06:00

GvHD manifests in many ways, and for me it's the skin, eyes, mouth, and occasionally the muscles and joints. It can hit you in a myriad of combinations and no portion of your body is safe. Thursday night, my feet started cramping and the toes kept locking in unnatural positions. When it's at its worst, my toes spread very widely and curl upward. This is what kept happening first to the left, then the right foot.

When this happens, I find it helps to massage my foot. If that doesn't work, I have to walk in order to stretch the muscles. I had a really hard time finding relief and as soon as one set of muscles would relax, the other foot would kick off. I took an ativan in the hope that it might help relax the muscles a little.

The ativan didn't help with the GvHD, but it did put me to sleep, which is all I was trying to do in the first place. Chris woke me an hour or two later because he said I felt really hot and needed to take my temperature. I can be an extraordinarily graceless person when my sleep is disturbed, so I know Chris must have been worried when he did so. 100.8 degrees fahrenheit.

Post-transplant, a fever of 101 degrees fahrenheit is a mandatory trip to the ER. Fever usually means an infection and transplant patients aren't so good at fighting them off without a lot of help. For me, it usually means three or four days in the hospital getting a cocktail of IV antibiotics. Dare I mention the poop swabs?

I did not go to the ER. Chris wanted to take me, but I argued that I'm nearly two years post-transplant and that the fever was probably the result of the excessive GvHD that I'd been suffering with that day. I now believe it was the other way around.

I think the GvHD flares were a result of my immune system reacting to an infection, but not quite understanding how to deploy an effective defense. Instead of sending in a small team of special forces, my immune system went nuclear and started attacking everything, hence the excessive itching and horrible cramping.

When Friday morning found me still feverish, I put a call in to my local oncologist. A nurse returned my call a few hours later. After getting details, she promised to confer with Dr. B. The result was an appointment with his APN, G., for the same day.

Dr. B. ordered so many blood cultures, the phlebotomist had to use both arms to draw blood. When I asked what the cultures were for, she blithely replied, "Everything."

By this time, I was feverish, my head hurt, I was nauseated, I had a sore throat, and all I wanted to do was sleep. G. checked me out and relayed the information to Dr. B. He popped in between patients and looked me over. Because the symptoms of leukemia can be similar to the symptoms of an extreme case of the flu, he decided to check a blood smear. He didn't think that I was in the throes of a relapse, but considering how it all manifested the last time, he wanted to be cautious.

A prescription for Biaxin was called in and he promised to call if he saw anything strange in my slides. I went home and slept for the rest of the day. There was no call, so I feel pretty confident that I'm suffering from some pedestrian illness.

I've been fever free for almost twenty-four hours. I get nauseated if I'm in a moving car, and I'm still not one-hundred percent. I'm pretty certain that the antibiotic is doing its job and helping fight off the infection because the skin GvHD has come roaring back. Although I itch as a result, I'm happy for it. I'd rather have this manageable complaint than the alternative.

Since I'm housebound, I've managed to think up a new knitting project using some yarn that's been languishing in my motley collection, so the down-time isn't totally a waste. I'll resume coursework tomorrow. The deadline is quickly approaching and I have six more lessons to turn in, as well as two tests left. This means I won't be answering calls or be present on the digital front for a bit.

I'll pop in once a week to keep everyone updated.

Thursday, already?

2010-06-17T08:40:00.002-06:00

I received an email from MDA reminding me that I have an appointment next Thursday, which reminded me that it's been a week since I last updated.

The steroid pack is empty and I enjoyed a compressed experience. My last experience with steroids lasted several months, giving me time to fully appreciate the manic bursts of energy and middle of the night hunger. There were a few days of excessive energy and two nights where I popped fully awake after only three hours of sleep. I didn't notice an increase in my appetite, which I am thankful for. I'm now mired in the sluggish throes of my adrenal gland's artificial increase in production having been cast off. Poor little gland is having to make adrenaline without the aid of methylpredinisone and it's making me a little cranky.

I noticed a small reduction in itching while taking the steroids. I still itch and there is still a danger of me tearing my skin open thanks to excessive scratching. It's all much more manageable now, though. On a scale of 1 to 10, the worst the itching has been is an 8 this week. There were days where I was constantly stuck at 10 before seeing my transplant doctor.

Chris observed that my complexion is a bit rosier as of late. I don't know which drug to attribute this to. I don't believe I've been taking the thyroid medicine long enough to have made a significant difference. I know I haven't been taking the Prograf long enough to have built up a homeopathic level in my system. Perhaps it has something to do with the obscene amounts of water I've been drinking. Who knows?

Dr. K. has ordered a complete pulmonary function test for next Thursday. She wants to be sure that my lungs aren't developing GvHD. That's a nasty condition, to be sure. I haven't noticed any diminished capacity, but I'd rather play things on the safe side. I'll also see Dr. H., the dermatologist who specializes in skin GvHD. I'm hopeful that she won't want a biopsy. I have numerous punch scars on my back and I don't care to add to them.

Next Thursday will be a very long day and I promise to post a recap on that day's madcap adventures the day after.

I'm still working on cranking out the marketing course work. It's happening much more slowly than I would like. I have seven more assignments to turn in and two tests left to take before the semester begins in August.

Thanks for keeping up with me as I muddle through all of this.

cGvHD and me

2010-06-10T09:36:00.003-06:00

I am exhausted. Chris and I got home around 11:30 and promptly went to bed after being up since 4AM. I was up again at 1AM vomiting, and then three times after that. As for the whys and the whats, I'll get to it.

My transplant doctor, Dr. K, saw me a little after lunch, and as a bonus she was being shadowed by a fellow from Germany. I like to think the bonus was more for him, rather then me. How often is a newly minted doctor studying transplants going to get to interact with a two time transplant patient with such an engaging sense of self-deprecation? Probably more often than I suspect, but none the less, he took notes and studied the physical manifestations of GvHD I was presenting.

Dr. K. admitted that she had visions of me covered in an angry red rash, which is why she asked me to come in immediately. I don't usually complain about transplant related complications, so when I do manage to come up with something, she believes it's pretty serious. Plus, she's really good at what she does and takes a personal interest in my well-being.

When she referenced an angry red rash she was alluding to the kind of GvHD that can land a person in the ER if not treated promptly. Any GvHD needs to be managed as soon as possible, because it has a nasty habit of ballooning into seriously life-threatening conditions. A little something can turn into organ failure in a matter of days or weeks. I'm not just talking rashes, either. I've seen transplant patients with angry red rashes. It's not very nice. You can google GvHD if you'd like a visual of how bad it can be, and if you're so adventurous, I recommend doing it on an empty stomach.

I have rashes. All lower case, and no italics. They are sometimes red and sometimes flesh toned, but mostly they ITCH. I have given myself scabs from constant scratching. Constant scratching due to constant ITCHING. The sensation is always present in different areas of my body and with varying intensity. Imagine the sensation of having a grain of sand under your skin being pushed around by a fire ant that is also simultaneously biting you as it pushes this little grain of sand around. Now imagine the intensity of the sensation being tied to the frequency knob of an old-school transistor radio, in the hands of your bratty younger sibling, who can't resist playing with shiny knobs and buttons.

The rashes cover most of my upper torso and upper legs and arms. Throughout the day, raised bumps appear on my face, mostly across my nose and cheeks. The bumps start out as very intense, concentrated itching, then become small raised welts, and then proceed to become very small pustules on my face only. It makes looking in the mirror in the late afternoon an adventure. It's not acne, but classic chronic GvHD.

Dr. K. prescribed a Medrol pack and told me to start taking 0.5mg of Prograf every other day. Medrol is a steroid that I've been on before. Nasty stuff. I only have to take it for six days. Prograf is an immunosuppressant drug that keeps your immune system from rejecting a transplanted organ. In my case, it's keeping the immune system from rejecting my body. The fact that this immune system recognizes its environment as foreign is what's causing the GvHD.

While Dr. K. was looking me over, she discovered cGvHD in my mouth. I had no idea, but as soon as she asked me about it I realized that something had been off. Food that I don't normally find spicy has been really spicy this week. The burning sensation in my mouth was located in the same area as the cGvHD that Dr. K. discovered. She prescribed a steroid mouthwash for this.

Here's where I go a little off tangent. I used the steroid mouthwash for the first time last night. It is clear and smells slightly sweet. When something is labeled as a mouthwash, I automatically assume it's going to be refreshing, maybe a little minty. That's just me. Some joker gave it a grape flavor.

In the entirety of my experience of taking grape flavored medicine, I have never found said medicine to taste like grape. Grapes taste like grapes. Wine tastes like fermented grapes. Grape flavored concoctions taste like purple. Flap-doodle, you say. Colors don't have flavors, you argue. I shall hold my ground on this one issue and say grape flavored things taste like a poorly derived chemical additive formulated by tongueless sadists. It smells purple and it tastes purple. Aliens who have never tasted a grape will insist that grape flavored items taste purple. If evil has a flavor, it is grape-bubble gum flavored medicine. I'll spare you the bubble gum flavored medicine rant.

I've only used the steroid mouthwash twice and can already feel a difference. The area in my mouth where GvHD was detected doesn't feel quite as foreign today.

I started taking prograf last night. One of its side-effects is that it can cause nausea and vomiting. It hasn't done so for me in the past, but drugs are drugs and you never know when you're going to develop a side-effect. I woke up nauseated an hour or so after taking it. I blamed all of the hurling episodes on food poisoning. Chris thinks it's the prograf. I'm willing to split the difference. The next dose is slated for Friday night.

My bloodwork showed that my liver numbers are still slightly elevated. They're slightly down from last month when I had bloodwork done at my local oncologist's office. It's nothing to be alarmed by. I also know that any liver-related issues can cause extremely itchy skin. My elevated LFTs are separate from the chronic GvHD affecting my skin. The higher numbers might be very minor GvHD or could be a result of extra iron being stored in the organ as a result of all of the blood transfusions I had to have. Thanks leukemia.

Dr. K. also had my thyroid checked. My thyroid stimulating hormone level is 7.3 (I can't remember the units that follow this measurement, so I will leave the spot blank). In March, my TSH was 6. Normal is under 5. I have hypothyroidism. The doctors don't know if it would have occurred independently of the damage done to my body by chemotherapy or if it is a result of said chemotherapy. I'm now taking a prescription for it. It must be taken in the morning on and empty stomach and one of the numerous warning labels on the pill bottle advises drinking a large quantity of water with it. It doesn't specify what constitutes a large quantity of water, so I took a stab in the dark and had 16 oz. You have to wait 30 minutes before eating anything. This is going to do strange things to my morning routine. I'm all for a little variety.

I also scored a prescription for tacrolimus ointment for the rashes. It is sticky and reminiscent of Vaseline. I know a lovely tacrolimus cream exists, because I've used it many times in the past with transplant number one. I suspect the ointment variety was devised by the same joker who thought purple flavored medicine would be a hoot.

Since you shouldn't use topical tacro on the face, I got a prescription for hydrocortisone cream for that afflicted area.

So, to recap, I now take estrogen once a day, a thyroid pill once a day, a whopping dose of vitamin D once a month, swish with steroid mouthwash twice a day, take prograf every other day, apply an ointment and a cream twice a day, and will take varying doses of medrol for six days. And a partridge in a pear tree...sorry, wrong list.

I won't know how effective all of the new medicines will be for a few weeks. The tacro ointment can take up to three weeks to produce a result. I'll need a few doses of prograf before a homeopathic level accrues in my system. I don't know about the thyroid prescription, but look forward to shedding some of the weight that refuses to budge from my middle.

With all of this excitement behind me, I plan on resuming school work. Unless something else happens, this may be the only post for the rest of the week. Hope it's good enough to hold you over until next week.

Schedules

2010-06-08T14:05:00.002-06:00

For the better part of the last three years, I've been living my life according to someone else's schedule. People in white lab coats, or people who worked for them would tell me where and when, and sometimes how. I'd say I was fairly compliant.

Now that I'm free to follow my own schedule, I find that I lack discipline and structure. Part of the problem is unique to me and my ability to procrastinate. The other part of the equation relies on Murphy's law. At some point during your adult existence, you will come to realize that the universe has a total disregard for your plans. Your perfectly planned schedule is but a pipe dream.

I planned on turning in three lessons for my independent study class this week. I was supposed to have finished the bulk of the grunt work today. I'd planned on getting most of the reading done this weekend. It didn't happen.

The reason none of this happened has to do with an itch. That small, persnickety feeling under the skin. Cats and dogs know what I'm talking about. I've seen the looks of intense satisfaction on their faces when a human scratches them in just the right spot--that place just beyond their own reach.

I itch. Nearly everywhere. It's distracting. I have trouble concentrating because of the itch. Saturday, Chris and I had to make a late-night run to the drugstore in search of something to help. I've been taking Atarax for the last ten days to help with the itching. It tamps down the sensation for a brief period of time. The itching becomes like white noise on Atarax. It doesn't last very long.

There are rashes on my back, flanks, abdomen, chest, arms and legs. This is in addition to the stuff on my face. Scratching doesn't help. I've been scratching so much, I'm afraid of tearing my skin. I emailed my transplant team at MDA in the hopes of being prescribed a magic pill to help with my discomfort.

I just got a call from my transplant nurse. My doctor wants to see the rash. This is the one in Houston. I have a regular check-up on the 23rd. She wants to see me tomorrow. In Houston. This is nothing to be alarmed by. She wants to see my skin before prescribing anything. In the world of skin GvHD, a verbal description just doesn't cut it. It's not one of her regular clinic days, but as it happens, she's going to be seeing another patient tomorrow, so she wanted to fit me in.

Chris is taking the day off from work to drive in with me. Yet another schedule interrupted.

I have a sneaking suspicion that I'll start taking Prograf again. That would mean that I'd have to start taking a handful of supporting pills as a result. Anti-fungals, anti-virals, and the lot.

Chris and I will tweet throughout the day. Our twitter feeds can be found in the side-bar on the right. I'll post something on Thursday, the universe permitting.

Flowerbed

2010-06-02T15:19:00.003-06:00

For the incomparable Susan and so many fabulous others:

It has been raining and we have a mole infestation, so when conditions improve, I'll go out and get better pictures. I mention the mole because I stepped in a hole earlier and don't care to repeat the experience with soggy ground.

Holiday recap

2010-06-01T07:40:00.006-06:00

Last week, I wrote about getting estimates to have a termite treatment applied to the perimeter of the house. In anticipation of having a trench six inches wide dug around the house, Chris and I had to take out the planting strip between the driveway and the house. It had only been in for a few months, so the plants never got a chance to put down deep roots.

I promised Susan that I would post a picture of the garden before we dug it up. Here it is:

And a few close-ups for good measure:

It's hard to see from the pictures, but some of the plants weren't doing very well, while others were flourishing. Curiously, the undersized plants were grouped together in the middle portion of the garden. Some might speculate that conditions were less than perfect. I tend to believe it had something to do with a certain Alsatian and his mixed breed cohort favoring the area with their special attentions. The plants that are struggling were transplanted to one of several pots in the hopes that given a little extra care they will recover. Once the termite treatment has been placed, Chris and I will fill in the planting strip with gravel mulch and relocate the potted plants to the side of the house. The only dog tall enough to threaten the potted plants with a lifted leg is a Great Dane and none of my immediate neighbors has one.

Chris and I put in a new shade garden under two of the Bradford pears in the front yard in order to save the other plants. We'd planned on putting something there next year to spare our neighbors having to look at the sparse and sickly lawn. Our decision to buy insurance against invading termites expedited the matter. Thanks to weather and my inability to tolerate sunlight and heat, it took three days to get everything done. There are a few things left to do and we're planning on adding to the shade bed next year. The grand scheme is a little too grand to tackle this year. I'll add plants in a little at a time as I'm able to.

Here are a few other pictures that I've promised in previous posts:

The urn containing the bullbine and red petunia is positioned on the walkway leading to the front door. The urn with the Spanish lavender and the extra marigolds is outside our backdoor. There were so many plants left over from doing the urns that we put them in under one of the crape myrtles in the front yard. The soil is clay, so the plants are struggling. I suspect they'll be moved to the empty bed dominated by the now shorn sago palm. It doesn't seem to be suffering from our over-zealous attentions and is putting up a cone as we speak. Deep down I was hoping it would give up and fall over. Stupid Jurassic plant.

I have a host of things to get done this week, so this may be the only posting. No worries, I am here and keeping busy with normal things.

Skin

2010-05-26T09:01:00.002-06:00

It has been two months since I went off of Prograf and the motley assortment of prescriptions that went with it. As such, I've been living with the strange affects of a stand-alone immune system. My two most prominent complaints: allergies and itching.

Pre-leukemia, allergies were a very minor nuisance. After the first transplant, environmental allergies put me on a daily dose of medication. I could not function without Claritin or Atarax. I've been taking Claritin each day for three years.

Since my liver numbers are now slightly elevated over last month's near normal numbers, I've decided to try a little experiment. Many of the drugs that I've been on in the past can elevate these dreaded numbers. So can GvHD. I've decided to abstain from most over the counter medicines--including Claritin, to see if it makes a difference. It's not scientific and there are a host of reasons my liver numbers could be elevated; the most prominent being graft versus host disease.

It's been five days and I'm functional. My nose runs off and on throughout the day and I'm prone to the odd sneezing fit. There's a hell of a lot of pollen in the air, so I'm staying indoors for the most part.

As for my second complaint, I itch. The skin GvHD issue is getting a little worse. There are only small windows during the day when my skin doesn't itch. Very small windows. My arms, abdomen, and legs are covered in multiple, small rashes and stretches of very dry, irritated skin. I keep cortisone cream close to me and have resorted to taking benadryl when the itching becomes obsessive.

That swath of skin across my cheeks and nose has been joined by two new patches on my chin and forehead. It looks like an odd cross between rosacea, eczema, and mid-life acne and--you guessed it, it itches. Sun exposure makes it worse, even with the use of sunscreens.

I'll be going to Houston at the end of June for a quarterly check-up and I'll raise the issues then. My local oncologist is aware of the problem.

I've been staying busy with the class I've been working on and various other things. This week, I've been getting estimates on termite prevention treatments for the house. Formosan termites are swarming this month and one poor homeowner in the neighborhood presented with $50,000 worth of termite damage very recently. I'm all for an ounce of prevention, hence the estimates.

I'm scheduled to have a treatment installed next Wednesday which means Chris and I have a few things to do in order to get the house ready. The planting strip along the side of the house has to come out since the treatment plan includes digging a six-inch wide trench along the perimeter of the house. About half of the plants will be relocated to a new planting bed under the shade trees in the front of the house. The plants that haven't been doing very well in the ground will be transplanted to pots and nursed back to health if they survive the transplanting process.

Yard wok should prove interesting this weekend. I'm sure a post involving out-of-control allergies and new rashes will be appearing shortly thereafter.

Two in one day

2010-05-19T16:08:00.002-06:00

I had a late afternoon appointment with my oncologist for a little routine maintenance. By maintenance I mean he was doing my monthly bloodwork. All is well and my numbers are good. I am a little disappointed by my liver enzymes, though. They're just a little elevated over last month. I'm coming to believe that this may be my new normal and that I have low level GvHD of the liver. I have a visit scheduled with MDA next month, so we'll see.

The numbers:

WBC: 7.0 k/ul

RBC: 3.74 M/UL

HGB: 11.8 g/dl

PLT: 285 k/ul

ALC: 1.2 k/ul

ANC: 5.2 k/ul

AEC: 0.5 k/ul

Alk phos: 138 iu/L

AST/SGOT: 60 iu/L

ALT/SGPT 130 iu/L

These days, seeing Dr. B. feels more like a social call than a doctor's appointment. With numbers like these, I'm not complaining and I love his staff, so it's a little treat for me.

Apologies

2010-05-19T06:47:00.004-06:00

The last few weeks have included several days during which multiple annoyances have been in abundance. These petty annoyances don't amount to very much on their own, but when added to a string of similar incidents they have become monumental.

For instance, this weekend Chris and I did the dreaded deed: the baby sago palms are no more. While Chris was doing the heavy labor, I decided to clean-up one of the flower-beds. Nestled between two struggling marigolds I found two fresh coils of dog poop. The bed I was working in is closer to the backyard than the street and prior observations lead me to believe the scat belonged to one of the next-door neighbor's two large dogs. The very dogs who are turned loose without leashes when nature calls. I've had the pleasure of observing the little fellows in the act of eliminating in my yard. This usually happens when I'm working in the shade of one of the trees or working near the front door. If you aren't looking for me, you won't notice that I'm there.

One of the dogs' owners is usually within a few feet of them and so they're aware of the fact that the little rascals are decorating a neighbor's yard. The only time I've heard them tell the dogs not to poop in another yard is when the yard's owner is visibly present. One day, I was bent over spreading mulch when the Alsatian came bounding up, sniffed the tree next to me and prepared to begin the christening. My neighbor wasn't bothered by her baby's actions until I straightened up and she noticed they weren't alone. We made eye contact and I called out a greeting. She didn't acknowledge me. Instead, she called for her dog and hurried into her backyard.

A few days ago, I had just parked my car and was gathering my things when I heard a muffled slam and felt the car vibrate. There was a young woman peering into the passenger-side window with an embarrassed look on her face. She yelled, "There's no damage!" before hurrying away. She'd parked too close to me and had opened her car door without looking.

I went out and had a look and didn't notice anything significant. It may not have occurred to the young woman that she and I would be going into the same building, or that I would end up in line behind her at the post office. As soon as she recognized me standing behind her, she became agitated. She stepped out of line to look at a case of stamps and began talking loudly to a friend. The gist of the conversation involved mailing invitations the following week. Since they wouldn't be sending the cards out that day, there was no need to be at the post office buying stamps, she said. She ignored the strange look her friend gave her and exited the lobby. Her friend waited a beat before following.

After I mailed my package, I decided to have another look at the car door. I found a spot where some paint was missing. It might have been a coincidence and the young woman opening her door into mine might not have been responsible for the chip. I can't honestly say one way or the other since she was long gone.

The petty events I've been torturing you with all have the same thing in common; no apologies. When did people stop taking responsibility? When did apologizing become a lost art?

Why does apologizing have to be an art at all?

The simple act of saying you're sorry needn't be a monumental moment and goes a long way toward defusing a situation before it gets blown out of proportion. Apologize with sincerity and acknowledge the fact that you've done something wrong. You may feel better for it and I can guarantee the other person will appreciate the acknowledgement.

And so, for torturing you with my rant, I will say, "I'm sorry."

...

2010-05-12T09:00:00.003-06:00

It feels like I just posted, but then I checked the date and realized that I'm overdue. All is well in the Gregory household. I'm still dealing with skin GvHD. The rashes are a little more prominent across my face, but seem to be concentrated most intensely on and around my nose. There are still large plaques of GvHD on my arms, mostly concentrated in the few inches above and below my elbows.

Since writing about them a few weeks ago, I've since learned that the reverse-freckles are a new take on GvHD. The light spots start to dry out and peel much like the tiny blisters I'm also afflicted with. I'm learning that it also takes less sun exposure to kick off another attack. I was outside, bare-faced, for less than five minutes before this latest episode. I now wear a dedicated sunscreen on my face in addition to the other two products containing sunscreen whether I intend to leave the house or not.

There have been no takers for the sago pups, so Chris is going to take them out this weekend. Three of the little buggers are showing signs of blooming again. We're making plans to put in a vegetable garden, which should keep us busy for the next little bit. Considering we are both so analytical, expect us to be in the planning stage for a bit while we hash out what will go in the actual garden.

History

2010-05-03T08:51:00.002-06:00

A recent friend asked if I've ever written a history of events for the blog. I have, but it's been a while. After Lisa asked, it occurred to me that a brief recap of the last three years would be helpful to new readers. I promised to dash one off only to be stymied by other engagements.

When I did find the time to sit and write, I couldn't put any words down. The more I thought about the last three years, the less inclined I became. Should I simply write a time line of treatments with approximate dates? Could my memory be relied upon to accurately convey what I'd felt in the midst of this madness? The answer to this last question is no.

I imagine that I'm not alone in shying away from too acute an examination of events that have shaped such a strange life. It's not that I'm trying to forget, rather I'm too close to what has happened. Time has not stretched far enough giving me the kindness of an altered perception. The guardian of that portion of my memory is encouraging me to let things lie and revisit the topic another day. Knowing me, that day will be in the very distant future.

The thing I should do is go to the beginning of this blog and read all of the entries. I'm not so inclined because I'm not ready to revisit things that seem to have happened yesterday. Since I'm not going to do it, I shouldn't expect new readers to do the same. Here is what I will do: I will write out the sequence of events with a disclaimer.

Disclaimer: This brief writing doesn't account for all of the procedures and treatments. It's more of a highlights piece viewed through a distorted lens.

A brief history:

In October 2006 I came down with strep throat. I know this because It was the week before my birthday when a client, her daughter, and the daughter's two children came in and spent more than an hour in close proximity to me before telling me that they had all just come from seeing the doctor. The mother and daughter had active strep and were taking advantage of that glorious window of opportunity that occurs right after getting a cortisone shot when you have an abundance of energy to do some serious shopping.

I saw my own doctor a few days later and had a culture done and was given a prescription to help things along. I silently cursed these women for being so selfish as to infect a string of people with strep because they didn't have the sense to stay home and get well. I managed to be actively sick on the days that I didn't have to work or be in school. Irony.

I never managed to fully recover from being sick and constantly felt tired and always on the verge of a sore throat. Being a full-time student while working a full-time job was punishing and I'm sure my work suffered on both fronts. I suppose I managed to pull things off because no one ever said anything to me directly.

When the bump on the back of my neck popped up in December, I thought it was stress or a bug bite gone rogue. I saw my GP for the lump on the back of my neck the week of Christmas.

By the time I saw my doctor, the lump on the back of my neck was joined by a lump behind my right ear. My GP of two years, the very same man who always introduced himself at each visit because he could never remember treating me previously, told me he had no idea what the problem was and prescribed antibiotics. He advised me to return in a week if things hadn't cleared up and he'd refer me to an ENT.

I dumped my GP and saw an ENT January 2, 2007. This new doctor reassured me that I was normal and that my lymphnodes were swollen due to a slight infection in my throat. To calm my nerves, he drew blood and had it sent off. More antibiotics.

January 9, 2007, my ENT calls me with the results of my bloodwork. My white blood cell count is just under 200,000 k/ul. He's consulted with a friend from med school who also happens to be a hematologist in town. Arrangements have been made for me to see this new doctor that afternoon.

There's a last minute switch and I see the man who will become my local oncologist. He tells me that I have Acute Lymphoblastic Leukemia. He encourages me to go to a hospital that specializes in treating adult leukemia. This is the point where I can look back and say that he helped save my life by being frank and candid.

I start treatment under the care of one of the country's foremost experts on ALL two days later in Houston. While in the hospital receiving chemotherapy, I learn that I have a rare chromosomal translocation that is an excellent indicator that chemo alone will not save me. History and experience have shown that this translocation means a short remission time followed by an aggressive return of leukemia. The leukemia comes back angry and is usually resistant to therapy that is currently available. This translocation is rare in adult patients and is usually found to occur in cases involving infant girls under the age of one. I will have to have a bone marrow transplant.

26 potential bone marrow matches are found after my brother fails to be a close enough HLA match. HLA is short for human leukocyte antigen and I need a 10/10 match. John is a 2/10. The chances of finding a match are greatest within a population of like ethnicity. I am Vietnamese/Chinese/Irish/English. 26 matches becomes zero. My doctors elect to do a stemcell transplant using cells harvested from umbilical cords. The HLA match doesn't have to be as close and the chances of finding a match for me are greater.

My employer is self insured and rejects the CBT as experimental. My husband is told that they will pay for hospice, but not a cord blood transplant.

I continue chemotherapy to keep me in remission while my husband, family, friends and strangers go to work to get me the life saving treatment I need. They start raising money so that we can move forward. The transplant averages a cost of $500,000.

Three months go by before the denial is reversed. Media and lawyers were involved.

I have a cord blood transplant in May 2007.

In October 2007, I am diagnosed with post transplant lymphoproliferative disease. This is much more common in hard organ transplants. This occurs in less than 1% of cord blood transplants. It is likened to pre-lymphoma. My digestive system is riddled with tumors. There is a mass in my left sinus cavity, just below my eye, and I can't breathe normally. I can't eat or drink without becoming violently ill. By this time, I have lost 6 dress sizes.

I receive Rituxan every month for four months. The tumors disappear.

The leukemia is back in June 2008.

Chris and I are back in Houston for more treatment. The chemotherapy is more aggressive and I am lucky to get into remission with the first round of treatment.

I am fortunate that I'm far enough out from the first transplant to be considered for a second transplant. An imperfect match is found and is willing to donate. There is a greater chance of complications due to the imperfect HLA match. Graft versus Host disease becomes a major concern.

I have a bone marrow transplant September 7, 2008.

October 2009, I learn that my donor's name is Dana. She has saved my life through her selfless act.

Today, I met with faculty members of LSU's College of Construction Management. I am registered to take classes this fall in order to complete the degree that was interrupted 3 years ago.

I am here and I am alive.

Thank you, Dana.

Still here, I promise

2010-04-30T06:38:00.002-06:00

It's been a full week since I stopped taking tacrolimus and Dana's immune system has been in charge. Since being weaned from the drug, I've noticed that my ability to concentrate has improved and that my skin has become public enemy number one. My allergies are also a bit more acute, but I think that has more to do with this crazy weather.

I have a bit of culpability where the skin issue is concerned. I have been gardening. It started two weeks ago when Chris and I decided to plant a container garden. Simple. All we had to do was go to the local home improvement store and find a container that we both liked and pick up a few plants.

We couldn't find one that we both liked. Chris found one that had a nice shape, but the color was awful and so we compromised. The container and a can of spray paint came home with us, along with an assortment of plants.

What should have been a quick half hour in the great outdoors became a series of projects that spanned two weekends. It was mostly my fault. I insisted on too many plants which meant one very colorful and cheery planter was planted as well as an unintended new garden bed. This one is located at the base of one of the crape myrtles at the front of the house.

Of course, we still had a few plants left over, so we decided to plant another container. Another trip for supplies meant new projects adopted on the fly. Chris wanted to plant ground-cover under the pear trees. More plants.

As we planted, we began talking about the overgrown sago palm guarding the front door. What if we trimmed it back? Another project. It started with an exploratory snip. I cut a frond from the top-most crown. Then I cut another. And another. It was like cutting your Barbie's hair for the first time. Soon, Chris grabbed a pair of shears and joined me. What we thought was three sago palms growing in a clump turned out to be thirteen.

There was a litter of sago pups hidden by the obnoxious growth. Once enough foliage was cut back, we could approximate how long the little bugger had been left to its own devices. The house is twelve years old and there's evidence that some long ago resident nurtured the landscape. At some point, one or a handful of the house's owners stopped trying or didn't realize that trees and bushes need a little attention. We even discovered an azalea bush, withered and gnarled, struggling to grow out from under the palm.

Cutting the sago back helped us realize that it might not be worth saving. It's branched out and has three crowns growing from various points on the main stalk. We could try cutting the extra heads off, but this would likely kill the plant. We've discussed taking out the main tree and replanting one of the pups in its place. The more we talk about it, the less inclined we are to keep the tree. Cutting back the spiky fronds has really opened up the front of the house and made it seem a little more welcome.

While tackling this project, Chris decided he wanted to take out the holly bush behind the sago. What holly bush, you may ask? The specimen that had grown into the bush next to it. The one being overwhelmed by the bully of a bush that seems to have taken over the rest of the bed. It had managed to put up a few distinctly shaped leaves giving testimony to its existence. Chris managed to pull it out in less than five minutes.

This project led to the discovery of a clump of agapanthus struggling for sunlight. We didn't touch them. I have a strange history with agapanthus. I can get them to grow and multiply, but they will not bloom for me. I plan on dividing the clumps and filling in the bed more evenly.

The front bed is looking a little disheveled thanks to our attentions. Chris spread mulch to hide most of the damage. We're discussing what the next step will be. It's fairly likely that the remaining bushes will be trimmed back severely, but that will have to wait until the fall when they become dormant. I hope they enjoy their reprieve.

What does all of this plant talk have to do with my health? I was exposed to more sun over the last two weekends than I have been collectively in three years. I wore sunblock, a hat, and long sleeves. I stayed in the shade as much as possible. I took precautions.

My arms are tan, but not in a conventional way. My transplant family would recognize what I'm talking about. The skin is unevenly pigmented and freckled with spots absent pigment. It is more reminiscent of a chemo tan--that flat brown that busulfan brings about.

I itch. There are plaques of rashes on my face, chest, back, and arms. They are all small and manageable. They are behaving in the normal manner.

I've elected to take a hiatus from the outdoors. I'll stay inside as much as possible and see if the GvHD dies down. There are plenty of projects to tackle inside to keep me busy. I plan on caulking the windows and around the doors this weekend. This will probably lead me to more projects, as home improvement always does.

I am well and I am happy. Dana's immune system is fully in charge and I am grateful.

It's overcast, otherwise, I'd take pictures of our handiwork. Until I'm able, here's a list of the plants that have made the cut:

bulbine
liriope
petunias
marigolds
verbena
oregano
lavender
a silvery-white ground cover whose name presently escapes me
alyssum

If you're in the area and interested in one of the sago pups, leave a comment, or email me. Chris and I are garden novices, so there are no guarantees that the little guys will survive our attentions, but if they do, you are welcome to them. Even better, if you know what you're doing, you're welcome to dig out as many sago pups as you like. Contact me and we'll make arrangements.

Relay for Life event postponed

2010-04-23T13:24:00.002-06:00

The Relay for Life event scheduled to take place tonight at LSU has been postponed. It has been rescheduled for Sunday, April 25 at noon. Sadly, I'm committed to be elsewhere, so I won't be giving the speech.

For those who are interested, here's what I would have said:

At no point in the last three years could I ever have imagined giving a speech at a Relay for Life event.

Because this year's theme is "Celebrating Birthdays," I'll tell you how I came to have three birthdays.

I was diagnosed with acute lymphoblastic Leukemia on January 9, 2007. I was 32 years old and up until that day, cancer wasn't something I worried about happening to me. It was something that I would worry about when I was older. After all, I was young, active, and healthy.

I was treated at MD Anderson Cancer Center where they discovered that my particular flavor of leukemia had a rare translocation. That meant chemo alone wouldn't cure me. I had a cord blood transplant in May 2007. In transplant circles, the day you get your transplant becomes the date you celebrate your second birthday. So now I have my "belly button birthday," which is in October and my "transplant birthday" in May.

I attended my first Relay for Life event in 2008 when a friend raised funds in my honor. It was the first time since having the transplant eleven months earlier that I almost felt normal and I had a fabulous time.

I relapsed two months later.

Back at MDA, I had more chemo and was fortunate enough to have a second transplant. This time, a complete stranger was donating bone marrow to save my life. September 7, 2008 became my third birthday.

Almost two years later, I'm able to stand before you because of life saving treatments that came about thanks to research funded by organizations like the American Cancer Society. Men and women like you all leave me in awe. You give a voice to people like me thanks to your dedication and resolve. The money you all raise goes toward programs that provide life lines for people dealing with cancer.

Through your efforts, you give the gift of hope. So, on behalf of cancer survivors, I'd like to thank you.

Thank you for giving me the chance to celebrate another birthday.

April check-up

2010-04-22T13:11:00.002-06:00

I saw my local oncologist yesterday and it looks like I'm managing to stay out of trouble.

For those of you who are interested:

WBC: 7.3 k/ul

RBC: 3.47 M/UL

HGB: 11.2 g/dl

PLT: 337 k/ul

ANC: 5.2 k/ul

AEC: 0.7 k/ul

ALC: 1.4 k/ul

Alk phos: 114 iu/L

AST/SGOT: 26 iu/L

ALT/SGPT: 36 iu/L

For the most part, my counts are within normal ranges. For those in the know, you can see that my red blood cell count is still low. The normal range is 4.2-5.4M/UL according to this particular machine. I've found that all of the "normal" numbers fluctuate just a little depending on what scale you use as a reference. It's not unusual for transplant patients to have low red blood cell counts years after their transplant.

The numbers that I'm really excited about are the last three. These are a snapshot of my liver function. The numbers have been wacky for the last two years and I expected them to be a little higher since I've been taking a lower dose of tacrolimus. Imagine my elation when I saw that they were almost all normal. The hold out is my Alk Phos at 114 iu/L. Normal is 32-92 iu/L. As my local doctor would say, "Close enough."

My absolute eosinophil count, AEC, is holding steady at 0.7 k/ul. These are the little critters that pop up in your blood when you're dealing with allergies or parasites or GvHD. Many visits ago, my transplant doctor confided to me that this is exactly where she likes to see the AEC. It's evidence that you're experiencing just a little graft versus host disease, which is so much better than leukemia. As my arms and face are covered in tiny, itchy, red patches, I can attest to the presence of a little graft versus host. I'll take it in this small quantity any day over the alternative.

I'm still slotted to give a small speech at the Relay for Life event tomorrow, and you all are still invited to come support a really worthy cause. Said speech has still not taken shape, yet. I'm struggling with the words. A twitter friend suggested, "Survivor, enough said." I loved this and would love to give a three word speech, alas, I don't think I'm famous enough for that.

If you can't make it to the event, but would like to donate, there's still time. You could dedicate a luminaria for a $10 donation, or make a donation to the Relay for Life website: http://www.relayforlife.org/LSU.

This weekend is going to be socially the most busy I've been in three years. A friend is flying in from Boston for Jazz Fest and Chris and I plan to meet up with her for a little bit. I haven't seen her in over ten years and it goes without saying that I'm excited. I'll put up a short post with pictures next week detailing this weekend's adventures.

Relay for Life, LSU

2010-04-19T09:54:00.002-06:00

Friday, April 23, 2010, LSU will host Relay for Life at the Old Front Nine starting at 6pm. The event will end at 6am April 24.

Last week, the LSU Relay for Life survivorship chair, Sara, contacted me about participating in the event. She's been following the blog since reading an article in the Reveille two years ago and invited me to come hang out. After talking to her, I ended up agreeing to give a short speech at the beginning of the event and walk in the Survivors Lap.

My friends and family know that I'm not a public speaker. I barely squeaked through speech class in highschool. My voice gets shaky, I make unintentional funny faces, and generally look like I'm going to cry. Did I mention that I'm the Queen of saying, "Um?" It doesn't' matter whether I practice or not. It always happens. Imagine my relief when a very kind-hearted college counsellor allowed me to substitute another elective in place of speech class.

Why am I baring this little chestnut on the blog? I'd like your support if you're in the area. Actually, I'd like you to support the American Cancer Society through Relay for Life. There will be lots of events throughout the night, giving you the opportunity to have some fun and donate to a very worthy cause.

If you can't be at the event in person, you can always purchase a Luminaria online to honor someone's memory, or celebrate someone's victory over cancer. Simply make a donation of $10 online and fill out the short form so your luminaria displays your intended message and the name of the person that you are honoring. The candles will circle the track and the luminaria will bear the name of someone who has battled cancer.

You don't have to stay for the entire event. You can come and go as you please. There's no cost to attend and you don't have to be a member of a Relay team. If you'd like to raise funds, there's still time. All the information that you'll need is on the website. You can click on the link, or go to: http://www.relayforlife.org/LSU.

The map link for the location doesn't seem to be working, so here are some directions:

From I-10/I-12 split:

Exit Acadian Thruway, then turn left. Cross Perkins Road and continue straight, while in the left lane, and passing Baton Rouge Beach on your right. Turn right on Highland Road. After entering the LSU gates, turn left onto the Nicholson Extension. The Old Front Nine will be on your left before you reach Nicholson Drive.

From I-10/I-110 split:

Exit Acadian Thruway, turning right, and continuing straight in the left lane. Cross Perkins Road and continuing straight, pass Baton Rouge Beach on your right. Turn right on Highland Road. After entering the LSU gates, turn left onto the Nicholson Extension. The Old Front Nine will be on your left before you reach Nicholson Drive.

An update on Chris' appointment

2010-04-15T09:37:00.002-06:00

Chris had an appointment with his bariatric surgeon yesterday. The doctor is pleased with his progress and confirmed that Chris is losing weight at an excellent rate. The doctor elected to inject saline into Chris' port in order to place a greater restriction around his stoma. This will keep Chris from being able to eat too quickly. Chris reported that it was a very big needle and it did hurt when his skin was pierced to access the port. I saw the band-aid and in layman's terms, it was a big ouchie.

Perhaps inspired by all of the Civil War documentaries we've been watching this week, my immune system has elected to attack me on two fronts. The skin GvHD is the worst that it's ever been. There are several rashes occurring on multiple parts of my body. The rashes themselves are the largest they've ever been and occurring on new areas. Don't fret, I'm still one of the lucky ones and my case would still be considered mild compared to others. It's itchy and unsightly, and that's about the worst of it.

My right eye is an attractive shade of pink and both eyes feel itchy and dry. Of course, they aren't physically dry, which is a crafty little trick that GvHD likes to play. They feel mildly strained, making reading a joy. The inside of my right eyelid feels like it's been coated in sand, making each blink an exercise in awareness. Again, I've got it good. I still remember meeting a patient in the apheresis clinic prior to transplant number one getting photopheresis for the GvHD of her eyes. Her eyes were so obscured by mucous, and the skin so pink and swollen, that I couldn't tell you their color. I often wonder how she is.

In summary, to the casual observer, I look like I have eczema, pink eye, and a moderate case of dandruff. Some days, I feel that I should have a shirt made up saying, "It's GvHD, not cooties."

The clarity of parity

2010-04-14T09:14:00.004-06:00

This blog post has nothing to do with finance, physics, or birth.

It has been nearly three weeks since starting hormone replacement and I'm definitely seeing and feeling a difference. When I first wake in the morning, I'm better able to get going. That sluggish, mopey miasma that passed for thought first thing in the morning has given way to a definite awareness. I wake up with a clear direction in my mind as to the happenings for the rest of the day. It very nearly resembles a plan. As for execution, that bit is still sorely lacking.

It has dawned on me that the horrible, impenetrable fog surrounding my capability has slowly thinned out to become more of a haze obscuring certain functions. As my body has become acclimated to the reintroduction of higher estrogen levels, my cognitive ability has slowly expanded. Where I was only able to handle one simple task at a time, I am now almost able to handle two slightly more complicated exercises. For the last three years, the only time I was able to read and understand a passage occurred in near complete silence and in isolation. The slightest thing distracted me, leading to multiple readings and much frustration. It got to the point that I stopped reading complex matter. Gossip articles were about the most I could handle.

I've been working on my marketing class while Chris is at work and the house is quiet. Anything requiring a remote or that makes noise as a matter of course is off. This has been the only environment in which I could accomplish even substandard work. Now, I'm finding that I can read over course material while Chris watches television or works on his laptop next to me. I still get distracted and find that I need to go over things more than once, but it's becoming easier. I'm snapping less at interruptions and feeling less fractious. It still takes me about a week to complete one assignment, when you're supposed to be able to do three assignments a week. I'm coping.

My ability to stay on task is improving and the time it takes me to finish a regular chore, e.g. make dinner, is decreasing. Where it might have taken four hours to churn out three dishes, it now takes about two hours. I'm getting better with mise en place and ordering events to be more efficient.

The balance is shifting and beginning to equal. The moments of confusion and utter blankness are occurring with less frequency and giving way to clarity. I'm finally starting to feel capable.

Negative Twenty

2010-04-10T15:48:00.001-06:00

Chris here:

I wanted to give a quick update on the progress of the Lap-Band procedure I had done and I'm really excited about it. Today I stepped on the scale and found that I had was down to 284. That’s 20 Lbs, since surgery.

Woo Hoo!

Anniversaries

2010-04-05T15:13:00.003-06:00

There is a stack of cards in my mind, each imprinted with the kind of anniversary that few people celebrate. Nine years ago today, my dad died of cancer. I think the official cause of death listed on his death certificate is "organ failure." He died because the original type of cancer he was diagnosed with had infiltrated his marrow and there was no coming back from it. The official date on record is April 6, 2001. It actually happened the night of the fifth and I'll never forget the timbre of my brother's voice when he called to tell me I needed to come home.

I have been feeling a little more emotional in the week leading up to today. I thought it was a result of the hormone therapy that I started almost two weeks ago. Part of it might still be, but I realized yesterday that my tendency to tear up at the smallest provocation had more to do with missing my dad.

Growing up, Tom was my biggest supporter and number one fan. As far as he was concerned, there wasn't anything that I couldn't do if I wanted to; I only had to try. He had a wicked sharp sense of humor that tended to surprise people because he was so reserved and shy. My brother has grown up to be the very image of dad down to the funny little smirk we both seem to have inherited. John inherited our dad's laid back demeanor and easy charm, whereas I like to think I have the gift of his humor. I know I definitely inherited his reserve.

There are a thousand things I could write about Thomas Betts, but the only thing I will write today is that I miss him terribly.

Garden pictures...sort of

2010-04-04T17:59:00.005-06:00

Here are some pictures from last weekend's gardening adventure for all of my patient friends.

Come here often?

I never thought I'd run out of impatiens. I think they were multiplying when I wasn't looking.

Finally finished planting and mulching. Time for a drink.

Now for a few close-ups:

White azalea in the backyard. This is a remnant of a past homeowner. The bush was being strangled by ivy when we moved in last year. I thought it was dead until it started blooming this week. It's still a very spindly, sickly looking bush, but it's trying and I've resolved to do some research to see if I can nurse it back to health.

I think this is a butterfly bush. Regardless, it's gorgeous in bloom.

Red azalea. There are four bushes dotting the foundation garden in front of the house. They don't look very healthy, so Chris and I have some work to do.

Chris wanted an urn for the front garden so we popped in to our favorite import store and hit the jackpot. The ice princess was a spur of the moment purchase while we were picking up some extra supplies at the home improvement store.

Baby hosta putting up new growth. I have a small hosta obsession. It's the only plant that I have any luck with.

One of the many coleus plants Chris put in.

The impatiens are thriving. I can't wait for them to start spreading out.

My sweet husband trying to control the weed population.