Where do I begin? It's been over 4 months since the last post and during that time I've been trying to fly below the radar. My tongue has healed, although it is still numb along the side from which the tumor was removed. I can't taste anything on that side, which makes meals an adventure in blandness and texture. I've been reassured that my ability to taste will return in time.
I contracted an upper respiratory infection which required me to go back on inhaled steroids. For those of you who are new to my blog, I'm prone to GvHD of the lungs. It's horrible and fills my lungs with infiltrates and reduces my ability to breathe. It's taken me over a month to recover from a virus that wouldn't have made much of an impact on me pre-cancer.
I saw my transplant doctor in February and she seemed pleased with my progress. I was on track to being able to space my visits with Dr. K. out to six month intervals last year. Since I presented with cancer number 3 (leukemia, PTLD [lymphoma], and now squamous cell carcinoma for those of you keeping count) last December, my leash has been reeled back in and I will continue to see Dr. K. every 3 months. She will continue to monitor my lungs and I will continue to have pulmonary function tests every few months.
Yesterday, I saw Dr. G., my head and neck oncologist at MDA. She spent a good deal of time looking in my mouth and feeling around for any anomalies. She didn't find anything, which is a very good thing. As a matter of course, I will have to see her every 3 months for the time being. She's being cautious and I am grateful for it.
In September, I'll be celebrating the 5 year anniversary of my second bone marrow transplant. It's significant in the same way that turning 18 is significant to a teenager. It signifies that I will have managed to move past a statistical hurdle and that according to published studies, the chance of a recurrence of leukemia has been minimized. This is the time when people will start throwing around the C word--cured.
I get twitchy when people want to pat me on the back for this milestone. Cured isn't a dirty word, it just comes with a lot of baggage for me. I've had cancer 4 times since 2007. 3 distinct types of cancer. I live with Graft versus Host Disease. I'm more comfortable with the term, "No evidence of residual disease."
5 years out means Chris and I can seriously look into starting a family. We've been discussing several options and once we're able to move forward, I'll write more about the process. This leads me to the final bit of information I learned during my check-up yesterday. While discussing the impact that this latest cancer occurrence has on the possibility of adopting children, Dr. G. disclosed that Chris and I were the first patients to bring it up to her. She explained that my most recent event shouldn't be a problem. In fact, by the time I make it 4 years out from the initial diagnosis of squamous cell carcinoma, my doctors will be on the lookout for a different kind of cancer.
I told Dr. G. that we were in luck because squamous cell carcinoma was that other cancer they were looking for.
Are you getting a sense of why I get a little funny about the C word? Lest you think I'm living under a dark cloud concerning my future, let me assure that I'm not. I don't plan on living my life waiting for the other shoe to drop. I'll deal with things when and if they happen and not waste any time worrying about what might be.
Tuesday, April 16, 2013
Monday, January 21, 2013
Six weeks later
It's been a little over six weeks since I had the partial glossectomy and I'm still dealing with healing. I have survived to tell you that one of the helpful little chestnuts people kept repeating to me from the very beginning of this newest cancer odyssey does not necessarily hold true. The tongue does not heal as quickly as you would believe. Yes, the tongue is a very vascular rascal. That fact should lead to faster healing.
When it's your tongue post glossectomy, all bets are off. Time stands still and misery becomes a near constant companion. I lived on protein shakes and later, applesauce until I was finally able to manage solid food on Christmas day. There is still a small hole on the side of my tongue and I am constantly aware that something's not quite right with the way my tongue feels in my mouth. The sensation will diminish with time, I'm told. I've also been told that the perpetual tenderness on that side will get better the further away from surgery I get.
I saw the head and neck specialist at MDA last Monday. She's very pleased at how well everything looks. I'm even more pleased to report that the final pathology report showed clean margins. It would appear that the clever surgeons got the bugger.
Some of you might remember that I met with genetic counselors before the surgery. They suspected that there was a very tiny possibility that I could carry the genome for Fanconi's anemia. I don't have any of the obvious physical signs that usually accompany the disorder. The reason they kept circling back to it is that I've had leukemia and squamous cell carcinoma and I'm younger than the demographic that usually present with both things. Don't forget that I also presented with a chromosomal abnormality each time I presented with leukemia. Then there was the PTLD. What I'm getting at is that my chromosomes like to get funky and know how to party.
A special kit was procured in order to test me for this newest possible affliction. Because I've had a cord blood transplant and a bone marrow transplant, the only way an original sample of my DNA could be procured was through a skin punch biopsy. I'll spare you the gory details and just tell you that it did not go well. The nurse opted not to put a stitch in the site--I've had multiple skin punch biopsies in the past and the PA always put a stitch in. Instead, I got steri-strips. They fell off the next day, which wasn't supposed to happen. I ended up seeing the internist that was subbing for my regular doctor 2 days later only to be told that nothing could be done and they should have put a stitch in it. No kidding.
I should find out about the test results in a month. If I do carry the gene, then the doctors will have a better idea of what other cancers to monitor me for. It is a never ending adventure where the rides suck.
Because I'm a glutton for wacky tests, I also had a pulmonary function test immediately after the biopsy. I've been on inhaled steroids for almost 3 years because of GvHD of the lungs. It's become a bit of a woobie for me. In the world of transplant survivors, GvHD of the lungs is one of the scarier developments. I remember all too well those horrible early days when taking 5 steps made me want to pass out.
After 3 years of PFTs, I finally managed to secure a normal result. I should be happy about it. In fact, I'm still a bit skittish about it. The pulmonary specialist's PA told me to discontinue the steroids. I've been off for just under a week and I keep waiting for the first signs of breathlessness. I can't help myself. If I start coughing, or get a respiratory infection, then I have to restart the inhaler immediately and call the specialist. I'll have another PFT in March to see if I'm maintaining this new breathing normal. Fingers are firmly crossed.
So there you have it. Work is keeping me incredibly busy and that is a very wonderful thing. Chris is well and the cats continue to run the show. What more could I ask for?
When it's your tongue post glossectomy, all bets are off. Time stands still and misery becomes a near constant companion. I lived on protein shakes and later, applesauce until I was finally able to manage solid food on Christmas day. There is still a small hole on the side of my tongue and I am constantly aware that something's not quite right with the way my tongue feels in my mouth. The sensation will diminish with time, I'm told. I've also been told that the perpetual tenderness on that side will get better the further away from surgery I get.
I saw the head and neck specialist at MDA last Monday. She's very pleased at how well everything looks. I'm even more pleased to report that the final pathology report showed clean margins. It would appear that the clever surgeons got the bugger.
Some of you might remember that I met with genetic counselors before the surgery. They suspected that there was a very tiny possibility that I could carry the genome for Fanconi's anemia. I don't have any of the obvious physical signs that usually accompany the disorder. The reason they kept circling back to it is that I've had leukemia and squamous cell carcinoma and I'm younger than the demographic that usually present with both things. Don't forget that I also presented with a chromosomal abnormality each time I presented with leukemia. Then there was the PTLD. What I'm getting at is that my chromosomes like to get funky and know how to party.
A special kit was procured in order to test me for this newest possible affliction. Because I've had a cord blood transplant and a bone marrow transplant, the only way an original sample of my DNA could be procured was through a skin punch biopsy. I'll spare you the gory details and just tell you that it did not go well. The nurse opted not to put a stitch in the site--I've had multiple skin punch biopsies in the past and the PA always put a stitch in. Instead, I got steri-strips. They fell off the next day, which wasn't supposed to happen. I ended up seeing the internist that was subbing for my regular doctor 2 days later only to be told that nothing could be done and they should have put a stitch in it. No kidding.
I should find out about the test results in a month. If I do carry the gene, then the doctors will have a better idea of what other cancers to monitor me for. It is a never ending adventure where the rides suck.
Because I'm a glutton for wacky tests, I also had a pulmonary function test immediately after the biopsy. I've been on inhaled steroids for almost 3 years because of GvHD of the lungs. It's become a bit of a woobie for me. In the world of transplant survivors, GvHD of the lungs is one of the scarier developments. I remember all too well those horrible early days when taking 5 steps made me want to pass out.
After 3 years of PFTs, I finally managed to secure a normal result. I should be happy about it. In fact, I'm still a bit skittish about it. The pulmonary specialist's PA told me to discontinue the steroids. I've been off for just under a week and I keep waiting for the first signs of breathlessness. I can't help myself. If I start coughing, or get a respiratory infection, then I have to restart the inhaler immediately and call the specialist. I'll have another PFT in March to see if I'm maintaining this new breathing normal. Fingers are firmly crossed.
So there you have it. Work is keeping me incredibly busy and that is a very wonderful thing. Chris is well and the cats continue to run the show. What more could I ask for?
Saturday, December 8, 2012
Recuperation
I need to admit to a bit of foolishness before I do anything else. I fully expected to be back at work on Monday. In fact, I planned on it. How hard could it be to recover from having part of your tongue taken out?
I survived a cord blood transplant, PTLD, a bone marrow transplant, and multiple bouts of graft versus host disease. This was supposed to be a walk in the park comparatively speaking.
Turns out a partial glossectomy hurts more than you'd imagine. I spent all of Thursday trying to recover from the anesthesia that was administered to me for the procedure. My kind surgeons prescribed hydrocodone in liquid form which takes the edge off of the pain and puts me to sleep. They also prescribed a viscous lidocaine "swish" which is the consistency of partially set gelatin and next to impossible to actually swish around in my mouth with an open wound. I'm supposed to use it to coat my tongue before eating. Since I still can't eat, it's not really a problem.
The combination of not being able to eat and being high on painkillers means I'm out of commission for the next week. When I'm feeling more human, I'll write a bit more about this newest experience with cancer. Until then, know that I'm mending, the cats are keeping me company, and Chris is doing an excellent job of making sure that I take it easy and am behaving.
Wednesday, December 5, 2012
Recovery
Good news. Ann is out of surgery & Dr. G is very confident she got all the cancer. She characterized it to me as small and less than 2mm below the surface if Ann's tongue. Basically, it was just the remnants of what the punch biopsy from a few weeks ago didn't get.
Ann is recovering from anesthesia and although she's still groggy, she's moving in the right direction. We might not have to stay in Houston tonight.
- Posted using BlogPress from my iPhone
Ann is recovering from anesthesia and although she's still groggy, she's moving in the right direction. We might not have to stay in Houston tonight.
- Posted using BlogPress from my iPhone
OSCC T1N0M0
Its been a long time since I set down to write a blog post and I'll confess I wish it was about a cheerier subject, but "needs must..." as they say.
The purpose of this entry is to cover the medical background of what we are going through, and I'm writing it as me and Ann are waiting for her to get called back into the OR for a partial glossectomy with a possible neck dissection and node removal. The qualifier "possible" is important here because it relates to the official diagnosis we got yesterday afternoon, which is also the title of this post.
OSCC - Oral Squamous Cell Carcinoma (of the mobile tongue)
The other numbers are whats called the TNM staging numbers. Tn - Tumor classification number, Nn - Number of Lymph Nodes invaded, and Mn - presence of metatasis from the original cancer site.
Common sense tells you the more of these variables are greater than 0 (zero) the worse off things are. That being said Ann is a T1N0M0. Her tumor was about 5 to 6 mm in diameter and less (according to the biopsy from weeks ago) less than 1mm in depth. In the world of oral cancer any thing less than 2 cm in diameter and less than 4mm in depth is a T1.
Volumetrically Ann's T1 tumor was only 2.25% the size of the largest T1 tumor on the classification scale { d (ann) = 6mm D (ann) = 1mm V (ann) = 28.27 mm^3 vs. d (max) = 20mm D (max) = 4mm V (max) = 1256.6 mm^3 and so V (ann) / V (max) = (28.27/1256.6 )*100 = 2.25% }. Which is good news, its quantifiably very small and is statistically less likely to have sent out metastasis anywhere else. T2 tumors are anything between 2cm and 4cm in diameter and can be anything from 1mm to > 4mm in depth.
If you are interested there is a very good journal article about early stage OSCC that can be found here : Early Stage squamous cell of the oral tongue. I'm going to borrow some figures from the journal article to illustrate what the prognosis is at this moment.
This shows the recurrence of cancer based on the DOI or Depth of Invasion. Ann's T1 (1mm DOI) is on the upper - less than 2 mm line.
Now the part I said I would come back to: There is a caveat with these charts. The diagnosis of T1N0M0 is locked to a certain extent. The CT scan Ann had the other day confirmed that there are no involved lymph nodes - but, it was not able to image her mouth clearly. Too much metal dental work scattered the energy of the CT Scanner and made the image look like a disco ball.
So while Ann is under Dr. G will be doing a through and detailed search with some other scanning methods MDA is testing. It is possible that the the T number or the M number could change. Not likely but it is a possibility. If they do then it will change the course of the planned surgery, and I'll try to explain how.
Ann is right now set to have a partial glossectomy - aka part of her tongue will be removed. Hopefully not a lot, just the portion that is invaded and a good clean margin around it. I think they aim for 5mm of clean tissue around the site.
If Dr. G finds anything else, or cant get good margins (because of a poor POI) then things will be much more serious and Ann will have a Neck Dissection with removal of all the lymph nodes on the left side of her neck. Do yourself a favor and DO NOT look up pictures of this procedure. Its disturbing to look at but people do recover successfully.
OK so that is all we know and I hope it has answered some questions that some were having regarding the cancer diagnoses and surgery. Right now we were scheduled to have surgery at 12:30pm, but have just been told they are running behind because of a difficult operation and we have been "asked" to wait until 2:45pm. The "asked" part kills me - like we would want to be somewhere else right now.
I'm not proofing this, I'm going to spend time with my sweetheart.
EDIT: Turns out I had to proof it after all
The purpose of this entry is to cover the medical background of what we are going through, and I'm writing it as me and Ann are waiting for her to get called back into the OR for a partial glossectomy with a possible neck dissection and node removal. The qualifier "possible" is important here because it relates to the official diagnosis we got yesterday afternoon, which is also the title of this post.
OSCC - Oral Squamous Cell Carcinoma (of the mobile tongue)
The other numbers are whats called the TNM staging numbers. Tn - Tumor classification number, Nn - Number of Lymph Nodes invaded, and Mn - presence of metatasis from the original cancer site.
Common sense tells you the more of these variables are greater than 0 (zero) the worse off things are. That being said Ann is a T1N0M0. Her tumor was about 5 to 6 mm in diameter and less (according to the biopsy from weeks ago) less than 1mm in depth. In the world of oral cancer any thing less than 2 cm in diameter and less than 4mm in depth is a T1.
Volumetrically Ann's T1 tumor was only 2.25% the size of the largest T1 tumor on the classification scale { d (ann) = 6mm D (ann) = 1mm V (ann) = 28.27 mm^3 vs. d (max) = 20mm D (max) = 4mm V (max) = 1256.6 mm^3 and so V (ann) / V (max) = (28.27/1256.6 )*100 = 2.25% }. Which is good news, its quantifiably very small and is statistically less likely to have sent out metastasis anywhere else. T2 tumors are anything between 2cm and 4cm in diameter and can be anything from 1mm to > 4mm in depth.
If you are interested there is a very good journal article about early stage OSCC that can be found here : Early Stage squamous cell of the oral tongue. I'm going to borrow some figures from the journal article to illustrate what the prognosis is at this moment.
This figure (Fig.2 in the article) shows the percentage of patients with early OSCC with T1 and T2 tumors. So based on what we know right now the prognosis is very good, and the overall survival rate percentage at 5 years is in the 90's.
Ready? OK more graphs now -
This is relapse of the tumor based on the "margin status" during the surgery. Margins are what the surgeons call the boundary of tissue that surround the tumor site in the excised volume of tissue. What this graph really says is that less people relapse if the cancer is compact enough for it to be cut away. There is a phenomenon called POI (pattern of invasion) that they look at on a cellular level. If the POI is diffuse (imagine scattering salt on a table) then its obviously harder to cut it all out. If its compact (imagine gently pouring salt on a table) then its much easier to remove it all.
What we are hoping for here is that the POI of Ann's newest little problem is such that it can be removed with ease. There is a suggestion that the earlier the tumor the more compact the POI is. Its not definitive, but thats what we are hoping for. I'll circle back around to this later.
last graph -
Now the part I said I would come back to: There is a caveat with these charts. The diagnosis of T1N0M0 is locked to a certain extent. The CT scan Ann had the other day confirmed that there are no involved lymph nodes - but, it was not able to image her mouth clearly. Too much metal dental work scattered the energy of the CT Scanner and made the image look like a disco ball.
So while Ann is under Dr. G will be doing a through and detailed search with some other scanning methods MDA is testing. It is possible that the the T number or the M number could change. Not likely but it is a possibility. If they do then it will change the course of the planned surgery, and I'll try to explain how.
Ann is right now set to have a partial glossectomy - aka part of her tongue will be removed. Hopefully not a lot, just the portion that is invaded and a good clean margin around it. I think they aim for 5mm of clean tissue around the site.
If Dr. G finds anything else, or cant get good margins (because of a poor POI) then things will be much more serious and Ann will have a Neck Dissection with removal of all the lymph nodes on the left side of her neck. Do yourself a favor and DO NOT look up pictures of this procedure. Its disturbing to look at but people do recover successfully.
OK so that is all we know and I hope it has answered some questions that some were having regarding the cancer diagnoses and surgery. Right now we were scheduled to have surgery at 12:30pm, but have just been told they are running behind because of a difficult operation and we have been "asked" to wait until 2:45pm. The "asked" part kills me - like we would want to be somewhere else right now.
I'm not proofing this, I'm going to spend time with my sweetheart.
EDIT: Turns out I had to proof it after all
Tuesday, December 4, 2012
Surgery
I have been poked, prodded, X-rayed, hooked up to electrodes, scanned, examined, and interrogated.
I have also been cleared for surgery.
Dr. G. will attempt to excise the rest of the cancer from my tongue tomorrow. I'm scheduled to check in to the hospital at 12:30.
I had a CT scan on Friday which didn't show any other areas of cancerous tissue. Unfortunately, I have a lot of metal fillings and crowns in my mouth, which can obstruct the scan. It looks like light tracing off of a mirror ball on the computer image. This means there are areas in my mouth that could not be clearly seen. That means that even though the scan was declared to be clean, there may still be something in my mouth.
Dr. G. will use a few diagnostic tools to look for further areas of dysplasia, as well as good old fashioned visual examination. A camera will be fed down into my throat to allow the team to look for any suspicious areas that may not have been obvious on my scans.
Chris will probably update the blog in the next few days to keep you all posted. In the meantime, I'm feeling well and hopeful that surgery will be all that is needed to deal with this newest flavor of cancer.
I have also been cleared for surgery.
Dr. G. will attempt to excise the rest of the cancer from my tongue tomorrow. I'm scheduled to check in to the hospital at 12:30.
I had a CT scan on Friday which didn't show any other areas of cancerous tissue. Unfortunately, I have a lot of metal fillings and crowns in my mouth, which can obstruct the scan. It looks like light tracing off of a mirror ball on the computer image. This means there are areas in my mouth that could not be clearly seen. That means that even though the scan was declared to be clean, there may still be something in my mouth.
Dr. G. will use a few diagnostic tools to look for further areas of dysplasia, as well as good old fashioned visual examination. A camera will be fed down into my throat to allow the team to look for any suspicious areas that may not have been obvious on my scans.
Chris will probably update the blog in the next few days to keep you all posted. In the meantime, I'm feeling well and hopeful that surgery will be all that is needed to deal with this newest flavor of cancer.
Friday, November 30, 2012
Quick update
Chris and I met with genetic counselors Thursday who are attempting to deconstruct my family's medical history and decipher how it relates to my present situation. They're attempting to rule out any undiagnosed syndromes that may have made me more susceptible to squamous cell carcinoma post transplant. This is all in order to better tailor my future treatment.
As they interviewed me, they drew my family tree, extending out to my parents' parents, mom's and dad's siblings and half-siblings, and noted which people related to me also had cancer. Out of those many people, I could only confirm that my dad and I had had cancer. There was a gray area concerning my older brother who died in infancy. My parents wouldn't talk about it, so I only know that he died before he was a year old and that it had something to do with a blood disorder.
After nearly 2 hours of talking, they determined that my cancer is largely environmentally driven and not genetic. This is good news for my brother and nephew.
On a side note, environmentally driven does not mean that the nanny parked me next to a toxic waste dump when I was a tot. It means that my cancers are likely derived from a host of environmental factors that I've been exposed to or exposed myself to. It doesn't mean that they can pinpoint the exact cause of the leukemia or squamous cell cancer, only speculate.
The counselors discussed getting a DNA sample from me so that they could have it analyzed to better customize my treatment. The problem is that I've had a cord blood transplant and a bone marrow transplant. Any blood pulled from me would not actually be representative of me. It would actually be that of my donors. The only way to get my original DNA is to do a skin punch biopsy. Freaky, right? They plan on discussing it with my team of doctors and making a decision next week.
I had a host of tests done today including chest x-rays, an EKG, and a CT scan. I met with the internal medicine doctor whose job was to decide whether I was fit for surgery. He peppered me with what seemed like a thousand questions. When he wasn't satisfied with my answers, he grilled Chris. He listened to my heart and lungs. I have Graft versus Host Disease of the lungs, so theres a lot of scar tissue in my poor lobes. I managed to squeak by and he gave me the green light to proceed.
He also informed me that my thyroid is misbehaving again. I'll have to get it rechecked and then probably have to double my synthroid dose again.
Monday, I'll meet with my transplant team and have more tests done. I'll probably post something Monday night.
As they interviewed me, they drew my family tree, extending out to my parents' parents, mom's and dad's siblings and half-siblings, and noted which people related to me also had cancer. Out of those many people, I could only confirm that my dad and I had had cancer. There was a gray area concerning my older brother who died in infancy. My parents wouldn't talk about it, so I only know that he died before he was a year old and that it had something to do with a blood disorder.
After nearly 2 hours of talking, they determined that my cancer is largely environmentally driven and not genetic. This is good news for my brother and nephew.
On a side note, environmentally driven does not mean that the nanny parked me next to a toxic waste dump when I was a tot. It means that my cancers are likely derived from a host of environmental factors that I've been exposed to or exposed myself to. It doesn't mean that they can pinpoint the exact cause of the leukemia or squamous cell cancer, only speculate.
The counselors discussed getting a DNA sample from me so that they could have it analyzed to better customize my treatment. The problem is that I've had a cord blood transplant and a bone marrow transplant. Any blood pulled from me would not actually be representative of me. It would actually be that of my donors. The only way to get my original DNA is to do a skin punch biopsy. Freaky, right? They plan on discussing it with my team of doctors and making a decision next week.
I had a host of tests done today including chest x-rays, an EKG, and a CT scan. I met with the internal medicine doctor whose job was to decide whether I was fit for surgery. He peppered me with what seemed like a thousand questions. When he wasn't satisfied with my answers, he grilled Chris. He listened to my heart and lungs. I have Graft versus Host Disease of the lungs, so theres a lot of scar tissue in my poor lobes. I managed to squeak by and he gave me the green light to proceed.
He also informed me that my thyroid is misbehaving again. I'll have to get it rechecked and then probably have to double my synthroid dose again.
Monday, I'll meet with my transplant team and have more tests done. I'll probably post something Monday night.
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