She did it again

Today, instead of cleaning the house like I should have, I baked cookies. Five dozen cookies. Double chocolate, chocolate chip. This is the first time that I have baked these cookies since I was diagnosed with Leukemia almost three years ago. After I ate a handful, I decided that it's going to be a while before I bake them again. Chocolate overload. Chris complained of suffering from a debilitating sugar high. I love these cookies, I really do and that's reason enough to ban them for at least six months.

In other news, Akiko had another explosive episode Tuesday night. Chris was asleep and I was up tooling around on the computer when Akiko raced into the bedroom like her tail was on fire. I recognized the behavior from the last time she lost control of her bowels and woke Chris up. He managed to grab her and cordon her off in the guest bathroom with a litter pan and some food and water.

Unfortunately, Akiko managed to have incidents in all but one room in the house. Wednesday morning, I dropped her off at the vet's for more testing and treatment. She's doing fine and may be able to come back home tomorrow. The parasite screening didn't find flukes, but did find tapeworms, which she's been treated for three times before. I'm not very certain of the degree of accuracy of the test since the flukes were missed the first time and she's been displaying signs that she still has them. I won't go into the gory details, but I will insist that the vet runs another screen to be sure that the alaria is finally gone.

We've only had her for five weeks and she's spent about half that time boarded at the vet's office. My fingers are crossed that all of her infections get cleared up and she can just be a happy little kitty for some time to come.

I have an appointment with my local oncologist next week. I'm really hoping that my liver numbers are closer to normal and that the prograf gets reduced. If the LFT's continue to rise I'll probably have to have another liver biopsy and I'd rather not. It's just creepy and your neck is sore for a few days afterward.

For PJ

I spoke to my friend PJ yesterday about her upcoming transplant. This will be number two for her and if any one can sail through the process, I firmly believe that it is her. She commented on how her doctor made a Kafkaesque observation about her resilience, which made me think of the cartoon Home Movies. It's a little bit of light hearted silliness and an homage to Kafka's Metamorphosis.

PJ, I hope it gives you a giggle while you get ready to go into the big house tomorrow. Here's to hoping that the next 100 days sail by quickly and are the most boring days you've ever experienced. Remember, boring is good. We like boring.

So this is for PJ:

Michelle

Rest in peace Michelle.

drugs

We had an early morning appointment with the vet today to have Etsuko's vaccinations brought up to date and to see about her runny nose. By the time noon rolled around, I was ready for a nap. I woke up about an hour later scratching my neck like a fiend.

When I checked it out in the mirror, I could see that I'd been scratching in my sleep. My arms, neck, and abdomen were red from all of the scratching. I considered taking a benadryl to see if it would help, only to realize that we were out. Rather than drive to the drugstore to get some, I decided to try something else laying dormant in my drug arsenal.

MD Anderson compounds a special concoction to combat nausea during chemo called ABH. It's a combination of benadryl, atarax, and ativan. From experience, I know it helps with that queasy feeling that is so ubiquitous during treatment. In a nutshell, it's like being darted with an animal tranquilizer. You zone out and drift off to sleep, leaving your nausea in the waking world.

Since ABH has two antihistamines in it, I thought, "Why not?" I let Chris know that I'd be taking it so he wouldn't worry about the zombie on the couch and settled down for my little experiment. Within minutes of taking the pill I found sweet relief and most of the itching disappeared. It's been half an hour and I feel stoned out of my mind thanks to the ativan. The rest of the day is going to be a wash, but the pervasive itchies have been banished. Chris has promised to go to the drugstore to pick up some benadryl so I can be functional on the days that I need a little drug interaction to combat the discomforts brought on by a confused immune system.

Now you'll have to excuse me while Chris's cat and I compete to see who can exert the least amount of effort for the next few hours. My money's on Akiko, but you never know, I may surprise myself.

Everything's relative

This week has been a bit of a motivational challenge on many fronts. The increased dose of Prograf has taken its toll and I've put up the white flag. That slow, dopey feeling too much tacro causes has permeated every aspect of my life for the last two weeks. I've spent entire days unable to finish a single project and it's driving me insane.

The little schedule that I put together for myself has fallen by the wayside. The dust building up on the window blinds has won a temporary reprieve. I wake each day feeling great and ready to take on the world, except that when I start to vacuum or mop or whatever, I run out of steam as soon as I finish the task. It's not like that tired feeling you get when your disease is active. It's more of a stamina issue. When I was taking 0.5mg of Prograf each day, I was able to finish almost everything I set out to do in a day. Now I'm lucky to check one task off.

Talking to me is a little bit of a challenge since I start to zone out almost immediately. I hear you, I swear I do, it's just that my mind starts to wander just as you get to the meat of your point and off-kilter topics like peep dioramas and their impact on the environment supersede the really important things you're saying. Chris is constantly having to repeat himself because of this. While you're talking about socializing medicine, I'm composing a manifesto on the importance of twizzlers to the movie watching experience. Help!

Hence, the lack of blog postings. I can't hang onto a topic long enough to write about it. I had to promise myself that I would write something today, then I had to guilt myself into doing it. I love to write! Writing has never been a chore and yet that's how I'm treating it. It's right up there with scrubbing the baseboards.

I've learned that however you wake up feeling, that's your new normal. A month ago I was able to pass as a relatively functioning adult and I was feeling pretty smug about it. Right now, I'm Zippy the wonder slug. That's today's normal. It is driving me insane, but I accept it as part of the transplant recovery process. Next month will be different, as will the month after that. At least I can look forward to a future.

As for the here and now, I've still been having problems with GvHD of the skin. Dr. K. had a consult with Dr. H(dermatologist) at MDA and they finally settled on a steroid lotion to be used on my scalp. I can't remember if I've written about it previously, but my scalp has been really dry and flaky thanks to the new immune system. Since my hair has yet to fully grow in, the flakes are really prominent, as are the dry patches. I've been applying the medication to my scalp for the last week and it's really helped. My scalp has stopped itching and the dry patches are starting to heal.

Yesterday, the palms of my hands and the bottoms of my feet started to itch as soon as I woke up. From experience, I know that scratching only intensifies the sensation, so I try to abstain for as long as I can. Unfortunately, the itching became really unbearable at one point. I was driving to the vet's office when the soles of my feet started to really itch. On a scale of 1 to 10 it was a 9. It went on for about fifteen minutes before I considered pulling over to have a good cry over it. It was that bad and I couldn't get any relief. I decided crying wouldn't help, so I gritted my teeth and resolved to go about my day as if nothing was happening. I managed to finish running errands and get home in one piece. Roughly two hours after it started, the itching finally went away. It's been flaring up off and on since then, but not to the same degree.

At the moment, the big toe of my right foot feels like I've stepped in live embers. I'm trying to ignore it since there's nothing to be done for it. At least the new immune system is doing something.

Life continues to move along and I'm just happy to move along with it.

Crazy cat update

I spoke to someone from the vet's office yesterday and they informed me that Akiko is over her coccidia infestation. The bad news is that she hasn't cleared the fluke infestation. We thought that one was under control. So all of those nasty trematodes are the reason for her diarrhea. My transplant doctor wants her to remain out of the house until she clears the infection. She's being boarded at the vet's office and I get updates on her once a day.



Etsuko is the happiest that I've seen her in weeks. So much for my theory that she needed a playmate.



I'm still doing fine and driving Chris crazy with a fluctuating temperature. Since the last transplant, my temperature has stayed firmly in the 97.2-98.0 range. Last night it got up to 98.9 and this afternoon it was 98.5. I know that it's fairly normal for my temperature to be in the low range and that other transplant patients have reported low temperatures. The only problem is how do you know when you're actually running a fever? I feel fine and have no symptoms of anything. I wonder if this has something to do with the increased dosage of prograf.

Spoke too soon

After scrubbing down most of the rooms yesterday, I was feeling pretty good about myself. I was so pleased with what I was able to accomplish, I gave myself the day off from working out. What takes me an entire day to clean can be done by a normal person in about two hours. I know it will be a while before I'm able to do things in a reasonable amount of time. I'm still trying not to let it bother me. It will resolve itself eventually.



This morning I awoke to a scene that will live on in my mind for the rest of my life. The alarm usually goes off between 4:45 and 5 am. Akiko woke both of us up around 4:30 running from room to room like a crazed rhino high on caffeine and sugar. Chris got out of bed with the intent of rounding her up and trying to get her to settle down only to discover the reason for her episodic behavior. She had managed to be sick in every room of the house. I'm not talking about vomit, either. There was a long trail of soupy mess spanning 5 rooms. It was mostly concentrated in the kitchen on the floors and strangely enough, on some of the cabinets. It was all over the living room, behind furniture and on the cream colored area rug.



Poor Akiko was huddled on a window sill in the dining room looking absolutely miserable. I think a normal person would have blown a fuse when confronted with the sheer scope of stinky mess. I just kept wondering how such a tiny cat could have manufactured so much slimy evil. She looked so pitiful curled up in the window, I could only imagine how badly she felt.



Chris cleaned up the mess, asking me to go behind him to be sure that he'd gotten everything. It was so bad he had to get on his hands and knees to scrub the floors before being able to mop. Thankfully, we have a carpet shampooer which will be employed later once the spot treatment dries out a little.



We dropped Akiko off at the vet once they opened. She'll be treated and boarded until the doctor can get her infection under control. I'm guessing the first round of treatment didn't eradicate the coccidia. Since she wasn't able to control her bowels, we thought it would be best for her to stay with the vet since I can't physically handle her mess.



I literally just got off of the phone with the vet. He called to give us a status on Akiko. She's still having tummy trouble and Dr. H. won't be able to confirm that it's coccidia until the lab returns results on her latest sample. He'll call me tomorrow as soon as he knows. I suspect that it is. She's getting a little something to help with the diarrhea in the meantime. Poor girl.

So there you have it. You dropped in to read about life and BMT's only to be hijacked by a sick kitty. More sick kitty news tomorrow, I promise.

Numbers for Nancy

Sorry it took me so long to get around to posting my blood counts.

WBC: 6.0 K/UL

RBC: 3.55 M/UL

PLT: 290 K/UL

ANC: 4.27 K/UL

I'm due for a local check-up the first week of August and am hoping that I continue to trend in the right direction.

Now that I think the danger has passed, I need to make a confession about a health related issue. It hasn't been an issue for me, thus far, but it could have been. When we adopted Akiko a few weeks ago, the first thing we did was to have our vet run some tests on her. We wanted to be sure that it would be safe to take her home to Etsuko without having to fear Feline Leukemia or any of the other fun diseases they pass to one another. We also wanted to be sure that it would be safe for me to be around her.

Her bloodwork was good and just to do due diligence, we asked to have a fecal sample analyzed. We got a call a few days later to let us know that Akiko had flukes. She had to go on a course of medication and a new fecal sample had to be collected 10 days later. No problem.

A day after the second sample was dropped off we got another call. No flukes. Unfortunately, the lab was able to pick up 2 other parasites that were missed in the first analysis. She had worms and coccidia. Hooray. I knew from experience that I didn't really have to worry about catching the worms since I didn't plan on eating any fleas. The coccidia was an entirely different affair.

As a transplant patient taking immunosuppresants, you're advised not to handle litter or anything else associated with potty time if you're a cat owner. One glaring reason for this is the danger of toxoplasmosis. The likelihood of dying from an infection is very high when your immune system is compromised. Toxoplasmosis is caused by a form of coccidia.

Many phone calls were made to my transplant team and to the vet. The poor vet's office might have thought I was crazy, but they knew that I was a transplant patient. They were able to tell me that Akiko was infected with coccidia isospora. This isn't the one that causes toxoplasmosis, but it was still a danger to me. After much consulting, my team determined that the cat needed to be isolated from me until her course of treatment was finished. The last pill was administered over the weekend and Akiko is happy to resume her role as the house's resident pest. Seriously, she drives Etsuko crazy.

I didn't want to talk about it earlier, because I didn't want to unduly worry anyone. We still need to drop off some samples to be entirely sure and both kitties have to have another worm pill the first week of August.

I've now had a full week with my new dose of prograf and I don't love it. I know other patients who have done the prograf rollercoaster can relate to the way an adjustment in your dose can affect you. Too much prograf in your system causes headaches and all sorts of other fun side effects. When your dose goes up, the first week or so leaves you feeling a little off.

I've had a hard time concentrating this last week and I've felt slower than normal. My motivation is hiding out in the basement and all I've wanted to do is lie on the couch. I know this is a normal reaction for me, since I've been through it before. I also know that the best way to shake the alien feeling is to just get up and start moving. After taking a few days off I resumed my role of dirt Nazi today. All of the floors got a thorough cleaning and my sadly neglected kitchen got scrubbed.

I know I keep promising pictures, but all of the ones I've taken keep coming out badly, so I'm putting Chris in charge of it. That's right Chris, you read it here first. You're in charge of posting house pictures. He really is better than me at taking pictures. It also helps that his hands don't shake a little like mine do. Thank you, increased dose of prograf.

Huge congratulations to Susan on Joseph!

10 month checkup

After spending a very long day in Houston yesterday, it was with great reluctance that I rolled out of bed this morning a little before 8. Yesterday was the 10 month anniversary of my second transplant and I suspect that I should have seen my transplant doctor a month ago for this particular checkup, since they like to do things in multiples of three. Somewhere along the line the time table got shifted and things got a little confused, but we should be back on track by the one year mark.

My bloodwork was a little down from last month's visit with my local oncologist, but still considered good. When I say it was a little down, I mean it in the strictest sense. It literally was only a hundredth or thousandth of a decimal point off. The only change was in my liver function. The numbers are on the rise, again.

While discussing this with my transplant doctor, it occurred to me that she was dealing with the issue on the fly. We've discussed possible reasons for my liver numbers in the past, including GvHD and damage due to medications. I've had my liver biopsied in the past, and the conclusion was that there was no GvHD present. As for damage being done to the organ due to medications, I can believe it. The inserts that come with the medications that I'm currently on read like a medical dictionary. There's also the possibility that I've had one too many blood transfusions and my liver is retaining too much iron which can contribute to what's presently happening.

As I sat on the examining table swinging my legs, I listened to Dr. K. reason out what we should do. It's during these moments that she reminds me most of a dragonfly flitting from one leaf to another looking for that perfect perch. Ultimately, she decided that we'll stay the current course with a minor adjustment in my Prograf dose. My bloodwork showed that the amount circulating in my body is half what it normally is, so I need to start taking 1mg a day instead of 0.5mg.

Dr. K. expressed concerns about increasing my Prograf citing the super aggressive nature of my brand of leukemia. I wonder if I'm oblivious to the gravity of my situation when we have these discussions. My mindset is business as usual; nothing to be done, but live my life. I wonder if I should be anxious or more concerned since Dr. K. always reverts to reassuring me in these moments. I know that the more suppressed my immune system is, the more likely a chance of relapse, just as I know that standing in the middle of the street during rush hour might win you a trip to the ER. Relapse is a very real concern to me, but at the moment it's so abstract that I can't muster the appropriate amount of anxiety. I feel well. I look well. I must be well.

It's my doctor's job to outline worst case scenarios. She does a great job of balancing the scales. I'm ten months out with no leukemia. Studies have shown that the likelihood of relapse is greatest within 6 months of transplant regarding my form of leukemia, especially with a second transplant. My first milestone is the one year mark. The second is two years.

In regard to my misbehaving liver, Dr. K. presented a third option. There may be a small smouldering case of GvHD fulminating. If my LFT's drop with the increase in Prograf, she'll have her answer. If the numbers continue to be elevated, or increase, then she's going to take me off of my anti-fungal. She mentioned changing it yet again, but when she uttered the word itraconazole, I put my foot down. Okay, I made a horrible face, but she got the point and took it off of the table. She mentioned cancidas and I reminded her that it's an IV drug and I no longer have a catheter. The plan is to take me off of an anti-fungal if the numbers continue to do what they're doing. I'd be off for a month and if there's improvement, then we'd go from there.

As for my present GvHD issues, the team is going to treat it like it's eczema. I'll keep doing what I'm doing to keep it under control. Since my scalp is super flaky I asked to get a topical steroid prescribed to help with what looks like unsightly dandruff. Dr. K. agreed to put me back on the medication I applied after the first transplant caused scalp issues. As for my apparent lack of hair, she reiterated that the chemo I received was responsible and reassured me that it would come back. After ten months of seeing my pink scalp through fuzz, I'm not as sure.

It was a good visit and I'll be following up with my local oncologist in a month. Then it's back to Houston in September for my one year. There will be a bone density scan and a bone marrow biopsy to look forward to. I think I'll sit around in my pajamas and do nothing more strenuous than balance my checkbook today. Etsuko is trying to crawl into my lap as I type, so I assume we're friends once more.

Checkup

Chris and I are headed to Houston tomorrow for a ten month check-up. My skin GvH is flaring nicely and I even have an active spot on my scalp to show my doctor. Fingers crossed that they don't disappear overnight so I have a visual aid. Off to bed I go.

In the realm of all things normal this has been a less than stellar week. In the world of cancer, it's been business as usual. The transplant community in which I exist is a tight knit family with too many members. It is populated with some of the most amazing, accomplished people it has ever been my pleasure to know. We reach out to each other with love, support, advice, and experience. I'm sure it's the same for people with various types of illness, always looking for the shared experience and a virtual shoulder to lean on.

This week I learned that my friend Michelle is facing some difficult decisions. Yesterday, I learned that Graham, a two year transplant survivor and fighter, had died. He had conquered his rare form of leukemia and suffered through severe GvHD and numerous infections. His wife, Sam, has been a constant voice of support on the Leukemia and Lymphoma Society website. My heart breaks for Sam and her two small children.