Jenna asked if I could elaborate on what could have caused the secondary cancer I'm now facing. I'll do the best I can to answer using what I've been told over the last 5 years of post-transplant follow-ups. Please keep in mind that I have no medical training.
After a bone marrow transplant, survivors are placed on a drug regimen to keep their new immune systems in check. The transplant recipient's organs are in danger of being attacked by the new immune system, when this occurs it's called Graft versus Host disease. It can be a very mild event manifesting in a persistent rash, or it can be life threatening and affect the lungs or liver. I've been on both ends of the spectrum and have suffered from GvHD of the eyes, skin, scalp, liver, lungs, and mouth.
I take tacrolimus, an immunosuppressant, which hobbles my donor's overactive immune system. It's meant to keep my organs safe. Mostly, it works, but when my liver and lungs were under attack, I needed high-dose steroids. Prolonged use of tacrolimus can lead to a host of problems which include secondary cancers. Prolonged use of any medication can lead to problems down the road.
Squamous cell carcinoma is the most common secondary cancer that afflicts bone marrow transplant survivors. As I understand it, the cancer usually manifests on the skin, usually on the face.
Here's where things get shady. Just because you have had a transplant and have taken an immunosuppressant doesn't guarantee that you will develop a secondary cancer.
The presence of Graft versus Host disease of the skin or mouth has been linked to an increased chance of developing skin or oral cancer. I've suffered from both since the first transplant. It comes and it goes with no warning. I've been seeing a dermatologist who specialized in GvHD of the skin. She checks me once a year for skin cancer.
I'm a little over 4 years out from the second transplant. The GvHD affecting the tissues of my mouth has been fairly persistent and is one of the reasons I suspect my transplant doctor of adding the head and neck oncologist to my stable of specialists. It's an if then maybe proposition.
There's no clear-cut reason for why this happened, just a jumble of incidences that added up to a bonus cancer.
Saturday, November 24, 2012
Tuesday, November 13, 2012
Where to begin?
One would think that after over five years of experience in dealing with the many different ways that cancer can turn a person inside out and upside down, that one would become something of a connoisseur of the absurd. One would be very wrong.
Two weeks ago I realized that the leukoplakia on my tongue was growing. To my alarmed mind the spot looked like it had doubled in size overnight. I called my head/neck oncologist at MDA and reported my concerns. She had me come to Houston the following Tuesday for a look. Easy enough.
A naval doctor pursuing a fellowship in oncology was the first to see me. He pulled my tongue this way and that, felt my lymph nodes, and took down my history. He looked at the pictures of the leukoplakia from six weeks earlier and declared that the spot looked the same.
Dr. G. came in and did an inspection and declared that the spot looked the same.
Are you all sensing the absurdity yet?
Since the spot had not had the good grace to disappear benignly, Dr. G. elected to biopsy it. A piece roughly the size of a pencil eraser* was removed and I was instructed not to eat anything salty, spicy, or crunchy for the next several days.
*The naval doctor showed this very lucky girl the actual specimen after it was taken.
It's been exactly one week and I finally got the call. The spot that looked like nothing to be worried about is squamous cell carcinoma. I have oral cancer.
I will have a CT scan of my head and neck during the first week of December to determine whether the cancer is lurking anywhere else. I'm also scheduled to have exploratory surgery on 12/5. This will involve an endoscopy, further tissue removal from the original site, and possible neck dissection if lymph node involvement is found.
Dear readers, you now know all that I know about the entire absurd affair.
I feel well. I do not feel like I have cancer. Beyond that are feelings of anger and disappointment, which I'm not quite ready to write about. Once I've had a few more days to process, you can rest assured that I'll be back and in rare form.
Two weeks ago I realized that the leukoplakia on my tongue was growing. To my alarmed mind the spot looked like it had doubled in size overnight. I called my head/neck oncologist at MDA and reported my concerns. She had me come to Houston the following Tuesday for a look. Easy enough.
A naval doctor pursuing a fellowship in oncology was the first to see me. He pulled my tongue this way and that, felt my lymph nodes, and took down my history. He looked at the pictures of the leukoplakia from six weeks earlier and declared that the spot looked the same.
Dr. G. came in and did an inspection and declared that the spot looked the same.
Are you all sensing the absurdity yet?
Since the spot had not had the good grace to disappear benignly, Dr. G. elected to biopsy it. A piece roughly the size of a pencil eraser* was removed and I was instructed not to eat anything salty, spicy, or crunchy for the next several days.
*The naval doctor showed this very lucky girl the actual specimen after it was taken.
It's been exactly one week and I finally got the call. The spot that looked like nothing to be worried about is squamous cell carcinoma. I have oral cancer.
I will have a CT scan of my head and neck during the first week of December to determine whether the cancer is lurking anywhere else. I'm also scheduled to have exploratory surgery on 12/5. This will involve an endoscopy, further tissue removal from the original site, and possible neck dissection if lymph node involvement is found.
Dear readers, you now know all that I know about the entire absurd affair.
I feel well. I do not feel like I have cancer. Beyond that are feelings of anger and disappointment, which I'm not quite ready to write about. Once I've had a few more days to process, you can rest assured that I'll be back and in rare form.
Friday, September 14, 2012
Unicorn assassins and such
On Tuesday, September 4, I celebrated the 4th anniversary of my 2nd transplant by schlepping to MD Anderson with my faithful sidekick, Chris, in tow. After 5 years of dealing with the unreasonableness that is cancer, I still know how to party. I've come to realize that I will forever be tethered to something resembling a harem of specialists and I am trying to accept the fact. Now that I'm working full-time, my coping abilities are a bit sharp around the edges and I find that I'm not as good at compartmentalizing as I once was.
I saw a new specialist that Dr. K. felt should be added to the mix given my predilection for being a human outlier in the wacky world of transplant medicine. Dr. G. specializes is cancers of the head and neck. I happen to have a head and neck, so we had things to talk about. Moreover, I have a small dark spot just inside my lip that is new and disturbing. Dr. G. took a look, and then she looked again using a crazy apparatus that shines a focused blue light and requires the room to be pitch dark. The small dark spot is a freckle. As to why I have a freckle on the inside of my lip, I cannot fathom.
After reassuring me about the freckle, she asked me about the spot on my tongue. I had no idea about any spots on my tongue. I don't generally poke around in there inspecting things. I don't think that I'd have ever known about this mystery spot had it not been for Dr. G. It's a small raised white spot on the lower backside of my tongue, about the size of the top of a pencil eraser. Dr. G. explained that it's a leukoplakia and in a normal, healthy individual, nothing to worry about. Because I am the individual under scrutiny, it is a worry.
Leukoplakia literally translates into white spot. It can be the result of trauma, like biting your tongue, or it could be a very early indicator of some type of oral cancer. Because I have had extensive chemotherapy, and have had 2 transplants, and suffer from GvHD of the mouth, I am at higher risk for developing some form of oral cancer. Color me surprised. I knew about my increased chances of developing skin cancer. In fact, I've come to terms with the fact that I most likely will develop some form of skin cancer. The whole oral cancer thing knocked me on my ass. I still can't rationalize why I find 1 type of secondary cancer preferable to the other. I just do.
Dr. G. was very quick to point out that the leukoplakia on my tongue corresponds to an area of roughness on the adjacent teeth and speculated that the offending white spot could be a callous. She asked me to get with my dentist and have the area filed down to see if the leukoplakia goes away. If the horrible little white monster disappears after that operation, then I get a small reprieve. If it doesn't, I'm scheduled for a biopsy of the tongue in December.
* Because my life is one long series of doctor appointments, I happened to have had a standing appointment scheduled with my dentist for this past Monday. He filed and smoothed my teeth and reassured me that a biopsy of the tongue is a very quick and easy procedure. I offered to fill in for him on the day of my surgery if he wanted to volunteer in my place. He also took a moment to explain that he thinks the leukoplakia looks like trauma and not cancer.
I had a complete pulmonary function test on 9/5, as well as a bone marrow aspiration. The results for both are pending. I should hear something from my transplant team in the next week regarding preliminary results of both tests. The complete results of the molecular marrow study won't be available for another 3 weeks.
I also saw Dr. K. She's placed me on a tacrolimus taper. I will now take 1 mg every other day instead of every day. She tried this 6 months ago and I had an immediate flare up of GvHD that manifested as an angry rash on my chest and arms. It's been a week and I have noticed a slight increase of the ever present GvHD on my face, but it's manageable. I'll see Dr. K. again in December to be reevaluated.
My peripheral blood work looked normal. I'll see my local hematologist/oncologist at the end of September to get my magnesium and tacrolimus levels checked. I'm also supposed to get a flu shot. Pfffft.
In the meantime, I'm going to ignore the thing in my mouth and resolve myself to the fact that I am much more likely to run into a unicorn assassin than live a day free of the word cancer.
I saw a new specialist that Dr. K. felt should be added to the mix given my predilection for being a human outlier in the wacky world of transplant medicine. Dr. G. specializes is cancers of the head and neck. I happen to have a head and neck, so we had things to talk about. Moreover, I have a small dark spot just inside my lip that is new and disturbing. Dr. G. took a look, and then she looked again using a crazy apparatus that shines a focused blue light and requires the room to be pitch dark. The small dark spot is a freckle. As to why I have a freckle on the inside of my lip, I cannot fathom.
After reassuring me about the freckle, she asked me about the spot on my tongue. I had no idea about any spots on my tongue. I don't generally poke around in there inspecting things. I don't think that I'd have ever known about this mystery spot had it not been for Dr. G. It's a small raised white spot on the lower backside of my tongue, about the size of the top of a pencil eraser. Dr. G. explained that it's a leukoplakia and in a normal, healthy individual, nothing to worry about. Because I am the individual under scrutiny, it is a worry.
Leukoplakia literally translates into white spot. It can be the result of trauma, like biting your tongue, or it could be a very early indicator of some type of oral cancer. Because I have had extensive chemotherapy, and have had 2 transplants, and suffer from GvHD of the mouth, I am at higher risk for developing some form of oral cancer. Color me surprised. I knew about my increased chances of developing skin cancer. In fact, I've come to terms with the fact that I most likely will develop some form of skin cancer. The whole oral cancer thing knocked me on my ass. I still can't rationalize why I find 1 type of secondary cancer preferable to the other. I just do.
Dr. G. was very quick to point out that the leukoplakia on my tongue corresponds to an area of roughness on the adjacent teeth and speculated that the offending white spot could be a callous. She asked me to get with my dentist and have the area filed down to see if the leukoplakia goes away. If the horrible little white monster disappears after that operation, then I get a small reprieve. If it doesn't, I'm scheduled for a biopsy of the tongue in December.
* Because my life is one long series of doctor appointments, I happened to have had a standing appointment scheduled with my dentist for this past Monday. He filed and smoothed my teeth and reassured me that a biopsy of the tongue is a very quick and easy procedure. I offered to fill in for him on the day of my surgery if he wanted to volunteer in my place. He also took a moment to explain that he thinks the leukoplakia looks like trauma and not cancer.
I had a complete pulmonary function test on 9/5, as well as a bone marrow aspiration. The results for both are pending. I should hear something from my transplant team in the next week regarding preliminary results of both tests. The complete results of the molecular marrow study won't be available for another 3 weeks.
I also saw Dr. K. She's placed me on a tacrolimus taper. I will now take 1 mg every other day instead of every day. She tried this 6 months ago and I had an immediate flare up of GvHD that manifested as an angry rash on my chest and arms. It's been a week and I have noticed a slight increase of the ever present GvHD on my face, but it's manageable. I'll see Dr. K. again in December to be reevaluated.
My peripheral blood work looked normal. I'll see my local hematologist/oncologist at the end of September to get my magnesium and tacrolimus levels checked. I'm also supposed to get a flu shot. Pfffft.
In the meantime, I'm going to ignore the thing in my mouth and resolve myself to the fact that I am much more likely to run into a unicorn assassin than live a day free of the word cancer.
Friday, June 8, 2012
Is it really that time again?
Time for another MDA update. I schlepped all the way to Houston on Wednesday for my 3 month check-up. My borrowed immune system is still up and roaring, and presently doing what immune systems are supposed to do, except for the whole attacking my lungs thing. It still thinks my lungs are the enemy.
Here are the counts, including normal ranges in parentheses:
WBC: 10.6 k/ul (4.0-11.0)
RBC 4.27 m/ul (4.00-5.50) Woo-hoo! I'm finally making enough red blood cells and it's only taken 5.5 years.
Hemoglobin: 13.2 g/dl (12.0-16.0)
Platelets: 396 k/ul (140-440)
ANC: 7.75 k/ul (1.70-7.30) This has been running high since the car wreck.
My thyroid was acting up the last time I was at MDA, so my endocrinologist doubled the dose of my thyroid meds. It seems to have done the trick since my T4 level was normal this go around.
I had a visit with the pulmonary clinic and was told what I already know. Once infiltrates get in your lungs, they're impossible to get rid of. On really humid or hot days it feels like my chest is being crushed and breathing seems next to impossible. I'll probably be dealing with this feeling for the rest of my life. In three months, I'll have another pulmonary function test to see if I've had any improvements. I'll continue to take inhaled steroids every day.
Dr. K. wants to discuss trying to tapering the tacrolimus again in 3 months. The last time she tried, my GvHD manifested as an angry rash on my arms and chest after being off of the immunosuppressant for 2 whole days. My wacky immune system.
On the weird news front, I'm unhappy to report that what I unhappily thought was GvHD of my toenail--yes, it does exist, is actually a fungal infection. Yay! I haven't been on a systemic anti-fungal for ages, so I really should be surprised that it didn't happen sooner. I get to treat it with an over-the-counter medication and if that doesn't work, then Dr. K. and I will discuss bringing in the big guns. She doesn't want to start a systemic treatment right now because it's so toxic to the liver and I have that whole liver GvHD thing that likes to flare up and interrupt my life.
Dr. K. also revisited the topic of secondary cancers after treatment. Long term use of immunosuppressants increases the chance of developing a squamous cell carcinoma particularly in the head and neck regions. She warned me to wear lots of sunscreen every day. I watched my dad deal with skin cancer. I will wear sunscreen.
No surprises, unless you count the nail mushrooms, and no complaints. All is well in my little corner of the world.
Thank you to all who left congratulations on graduation! I still can't believe I managed to do it.
Here are the counts, including normal ranges in parentheses:
WBC: 10.6 k/ul (4.0-11.0)
RBC 4.27 m/ul (4.00-5.50) Woo-hoo! I'm finally making enough red blood cells and it's only taken 5.5 years.
Hemoglobin: 13.2 g/dl (12.0-16.0)
Platelets: 396 k/ul (140-440)
ANC: 7.75 k/ul (1.70-7.30) This has been running high since the car wreck.
My thyroid was acting up the last time I was at MDA, so my endocrinologist doubled the dose of my thyroid meds. It seems to have done the trick since my T4 level was normal this go around.
I had a visit with the pulmonary clinic and was told what I already know. Once infiltrates get in your lungs, they're impossible to get rid of. On really humid or hot days it feels like my chest is being crushed and breathing seems next to impossible. I'll probably be dealing with this feeling for the rest of my life. In three months, I'll have another pulmonary function test to see if I've had any improvements. I'll continue to take inhaled steroids every day.
Dr. K. wants to discuss trying to tapering the tacrolimus again in 3 months. The last time she tried, my GvHD manifested as an angry rash on my arms and chest after being off of the immunosuppressant for 2 whole days. My wacky immune system.
On the weird news front, I'm unhappy to report that what I unhappily thought was GvHD of my toenail--yes, it does exist, is actually a fungal infection. Yay! I haven't been on a systemic anti-fungal for ages, so I really should be surprised that it didn't happen sooner. I get to treat it with an over-the-counter medication and if that doesn't work, then Dr. K. and I will discuss bringing in the big guns. She doesn't want to start a systemic treatment right now because it's so toxic to the liver and I have that whole liver GvHD thing that likes to flare up and interrupt my life.
Dr. K. also revisited the topic of secondary cancers after treatment. Long term use of immunosuppressants increases the chance of developing a squamous cell carcinoma particularly in the head and neck regions. She warned me to wear lots of sunscreen every day. I watched my dad deal with skin cancer. I will wear sunscreen.
No surprises, unless you count the nail mushrooms, and no complaints. All is well in my little corner of the world.
Thank you to all who left congratulations on graduation! I still can't believe I managed to do it.
It's been ages
It's been ages since I've felt compelled to write something for the blog. The last two semesters of college have been particularly hard for me. I feel a little ridiculous for thinking so given everything that I've been through over the last 5.5 years. After coming off of systemic steroids for GvHD of the liver and lungs last year, I wanted to hit the ground running. I had planned on it and was on my way when the car accident happened.
I've been in physical therapy since December. The near constant pain made concentrating in class difficult. Dealing with the other driver's insurance company has been anything but a pleasure. Having a herniated disc in my neck is more upsetting than chemo for me.
Traction and physical therapy are helping. I take muscle relaxers when the pain in my neck and shoulders becomes unbearable. That's about all I can say about it.
At some point in February it dawned on me that this would be my last semester at LSU. I started freaking out about finding a job. I didn't know how to explain the 4 year long gap on my resume that spanned cancer, treatment, and recovery. Cancer doesn't come with a manual.
I'm a member of the Construction Student Association, but I haven't been able to really participate. At first, because of the GvHD and mega doses of steroids, and then the wreck happened and most of my free time was given over to physical therapy and pain management. A perk of being a member of CSA is that you get notified when companies are looking to fill positions. I applied for nearly everything. I got no responses.
I went to interviewing workshops and a Q&A panel with construction company recruiters. I went to a construction interviewing day social. It was painful because I felt like I was wearing a flashing neon capital C on my back. I didn't know how to broach the subject with complete strangers who also happened to be the individuals who could grant me interviews.
Lucky for me, someone did it for me. Steve was introduced to me through his student intern, who also happened to be the sitting president of CSA the semester that I was diagnosed. Steve followed the blog during my treatment. He learned that I was back in school and reached out to me. He's been one of my biggest cheerleaders this semester and is the reason that I was able to overcome the fear that potential employers would pass on me because of the last 5 years.
Steve reached out to his peers in the industry and helped steer me through the dreaded CID social. Had it not been for him, I'd still be stammering over explanations of my cancer hiatus in interviews.
It's hard for me to explain, but after you've been sidelined for so long by cancer, your confidence takes a serious beating. Other survivors understand immediately, because they've lived through it too. I know that I can navigate a medical emergency like nobody's business and in a crisis, I'm the person you want to be standing next to. It's the every day stuff that can occasionally shake my confidence. I'm getting better and I know it's only a matter of time before I find myself laughing this off, too.
I went on a string of interviews. Had it not been for Steve and some of my professors, I doubt that I would have had as many opportunities. A lot of people quietly reached out on my behalf. I am thankful beyond words.
I received an offer with a really great company a few weeks ago. My first day is Monday, and the fact that I'm able to write that after absolutely everything puts me over the moon with joy.
I've been in physical therapy since December. The near constant pain made concentrating in class difficult. Dealing with the other driver's insurance company has been anything but a pleasure. Having a herniated disc in my neck is more upsetting than chemo for me.
Traction and physical therapy are helping. I take muscle relaxers when the pain in my neck and shoulders becomes unbearable. That's about all I can say about it.
At some point in February it dawned on me that this would be my last semester at LSU. I started freaking out about finding a job. I didn't know how to explain the 4 year long gap on my resume that spanned cancer, treatment, and recovery. Cancer doesn't come with a manual.
I'm a member of the Construction Student Association, but I haven't been able to really participate. At first, because of the GvHD and mega doses of steroids, and then the wreck happened and most of my free time was given over to physical therapy and pain management. A perk of being a member of CSA is that you get notified when companies are looking to fill positions. I applied for nearly everything. I got no responses.
I went to interviewing workshops and a Q&A panel with construction company recruiters. I went to a construction interviewing day social. It was painful because I felt like I was wearing a flashing neon capital C on my back. I didn't know how to broach the subject with complete strangers who also happened to be the individuals who could grant me interviews.
Lucky for me, someone did it for me. Steve was introduced to me through his student intern, who also happened to be the sitting president of CSA the semester that I was diagnosed. Steve followed the blog during my treatment. He learned that I was back in school and reached out to me. He's been one of my biggest cheerleaders this semester and is the reason that I was able to overcome the fear that potential employers would pass on me because of the last 5 years.
Steve reached out to his peers in the industry and helped steer me through the dreaded CID social. Had it not been for him, I'd still be stammering over explanations of my cancer hiatus in interviews.
It's hard for me to explain, but after you've been sidelined for so long by cancer, your confidence takes a serious beating. Other survivors understand immediately, because they've lived through it too. I know that I can navigate a medical emergency like nobody's business and in a crisis, I'm the person you want to be standing next to. It's the every day stuff that can occasionally shake my confidence. I'm getting better and I know it's only a matter of time before I find myself laughing this off, too.
I went on a string of interviews. Had it not been for Steve and some of my professors, I doubt that I would have had as many opportunities. A lot of people quietly reached out on my behalf. I am thankful beyond words.
I received an offer with a really great company a few weeks ago. My first day is Monday, and the fact that I'm able to write that after absolutely everything puts me over the moon with joy.
Sunday, May 20, 2012
Ann's Big Day
Don't want to disappoint anyone, but Ann has the day off and your "guest" blogger for the day is me [Chris]. Wow, how long has it been since I blogged last?
Friday, Ann passed another milestone, and I'm happy to say it wasn't cancer related. You see after Ann got sick in 2007 she had to abort her college degree and was only healthy enough to resume it again two years ago. After two years and lots of hard work, this Friday was the big pay off.
My darling Wife and soulmate is now a college graduate!
Friday, Ann passed another milestone, and I'm happy to say it wasn't cancer related. You see after Ann got sick in 2007 she had to abort her college degree and was only healthy enough to resume it again two years ago. After two years and lots of hard work, this Friday was the big pay off.
My darling Wife and soulmate is now a college graduate!
Congratulations Honey! I love you!
Wednesday, May 2, 2012
Goodbye April
March and April have been particularly difficult months for me. My sweet grandmother passed away April 15. Services were held in California, where my extended family lives. I wasn't able to fly out because of school and it's weighing heavily on my heart.
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