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.
Friday, September 14, 2012
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.
Saturday, March 17, 2012
Another 3 month checkup
It's been 3 months since my last marathon day at MDAnderson, and since the length of my leash hasn't changed, it was time for another marathon day. The usual 5 hour long drive from Baton Rouge to Houston morphed into over 9 hours thanks to a bridge closure before Beaumont. Chris and I left the house at 3 in the morning to make my first appointment at 8:15. We missed that one, and the 4 after it. I missed a blood draw, visit with the cardiopulmonary nurse, pulmonary function test, a visit with my endocrinologist, and a bone density scan. It was not an auspicious start to the day.
My endocrinologist, Dr. J., was kind enough to work me in immediately after I had my blood drawn. Since labs can take an hour or more to finish the various and numerous tests my doctors like to order, he didn't have everything he needed. We were able to discuss the changes my new gynecologist made to my hormone replacement therapy. She switched me from PremPro to Seasonale. Dr. J. had originally prescribed PremPro for me after it became apparent that I was post-menopausal. I tolerated it well and it kept me feeling human.
When I started showing signs of not actually being post-menopausal, Dr. R. took me off of hormone replacement therapy. When it became apparent that I needed to restart hormones, Dr. R. switched me over to a low-dose birth control pill. The first 3 months on the new drug were brutal. I have finally adjusted and feel normal. Dr. J. explained that there are 2 schools of thought regarding HRT. He's old-school, which is why he chose PremPro. Dr. R. is new-school. I'm just happy to be feeling quasi-normal on the human front.
Dr. J. was pleased with the improvement in the elasticity and appearance of my skin. My hair hasn't grown in as well as he would like, but he's going to wait and see if it catches up. Vitamin D levels weren't available. Thyroid levels weren't available. Bone density results weren't in because I had yet to have the scan.
I was able to get in for the pulmonary function test, but the cardiopulmonary nurse was gone for the day. The only appointment I managed to get to on time was the one with my transplant doctor. She was being shadowed by 2 doctors working on their fellowships, so I was looked over by 3 transplant doctors very thoroughly. The results were finally in from the molecular study attached to the bone marrow aspiration from my previous visit. The FISH test showed no evidence of residual disease on a cellular level. This is a good thing. No evidence of residual disease means that the aspirated marrow didn't contain cancerous cells.
My vitamin D levels are still low. My thyroid is misbehaving again. Dr. K. wanted to know if I'd been feeling sluggish or depressed and if I'd been sleeping a lot. I'm in the final semester of my degree program. I'm a basket case. I don't have time to sleep. My TSH level is twice as high as it should be. Since I wasn't displaying any symptoms, Dr. K. decided to wait and see, rather than doubling the dose of synthroid I regularly take.
I still have GvHD of the lungs. I still carry a rescue inhaler and take inhaled steroids twice a day. I suspect that there is scar tissue in my lungs. I will always be more susceptible to chest infections, and predisposed to pneumonia. Let's not even get into the whole fungal infection thing. I don't know if I'll ever regain pulmonary normalcy. At least I'm still here.
My liver is still behaving, and that makes me happy. Dr. K. decided to taper my immunosuppresant. She told me to reduce my dose from 1mg of tacrolimus a day to 1mg every other day. Her reasoning for starting the taper is that the measurable level of tacrolimus in my system is nearly undetectable. At that level, the doctors don't know what the real benefit of staying on it is.
The day after I skipped my first dose of tacro, my back and stomach were covered in a rash and it felt like my skin was swarming with crawling bugs. My scalp started flaking the very next day. I think I know what that nearly undetectable level of tacrolimus does for me.
Dr. K. told me to stop the taper after Chris persuaded me to report the rash. She prescribed some steroid cream to help control the rash while I wait for the tacrolimus to bring my system back in line.
As for the missed bone density scan, I was able to get worked in after seeing Dr. K. Because it was the very end of the day, the results weren't available before we left for home.
I'll post when I know more.
My endocrinologist, Dr. J., was kind enough to work me in immediately after I had my blood drawn. Since labs can take an hour or more to finish the various and numerous tests my doctors like to order, he didn't have everything he needed. We were able to discuss the changes my new gynecologist made to my hormone replacement therapy. She switched me from PremPro to Seasonale. Dr. J. had originally prescribed PremPro for me after it became apparent that I was post-menopausal. I tolerated it well and it kept me feeling human.
When I started showing signs of not actually being post-menopausal, Dr. R. took me off of hormone replacement therapy. When it became apparent that I needed to restart hormones, Dr. R. switched me over to a low-dose birth control pill. The first 3 months on the new drug were brutal. I have finally adjusted and feel normal. Dr. J. explained that there are 2 schools of thought regarding HRT. He's old-school, which is why he chose PremPro. Dr. R. is new-school. I'm just happy to be feeling quasi-normal on the human front.
Dr. J. was pleased with the improvement in the elasticity and appearance of my skin. My hair hasn't grown in as well as he would like, but he's going to wait and see if it catches up. Vitamin D levels weren't available. Thyroid levels weren't available. Bone density results weren't in because I had yet to have the scan.
I was able to get in for the pulmonary function test, but the cardiopulmonary nurse was gone for the day. The only appointment I managed to get to on time was the one with my transplant doctor. She was being shadowed by 2 doctors working on their fellowships, so I was looked over by 3 transplant doctors very thoroughly. The results were finally in from the molecular study attached to the bone marrow aspiration from my previous visit. The FISH test showed no evidence of residual disease on a cellular level. This is a good thing. No evidence of residual disease means that the aspirated marrow didn't contain cancerous cells.
My vitamin D levels are still low. My thyroid is misbehaving again. Dr. K. wanted to know if I'd been feeling sluggish or depressed and if I'd been sleeping a lot. I'm in the final semester of my degree program. I'm a basket case. I don't have time to sleep. My TSH level is twice as high as it should be. Since I wasn't displaying any symptoms, Dr. K. decided to wait and see, rather than doubling the dose of synthroid I regularly take.
I still have GvHD of the lungs. I still carry a rescue inhaler and take inhaled steroids twice a day. I suspect that there is scar tissue in my lungs. I will always be more susceptible to chest infections, and predisposed to pneumonia. Let's not even get into the whole fungal infection thing. I don't know if I'll ever regain pulmonary normalcy. At least I'm still here.
My liver is still behaving, and that makes me happy. Dr. K. decided to taper my immunosuppresant. She told me to reduce my dose from 1mg of tacrolimus a day to 1mg every other day. Her reasoning for starting the taper is that the measurable level of tacrolimus in my system is nearly undetectable. At that level, the doctors don't know what the real benefit of staying on it is.
The day after I skipped my first dose of tacro, my back and stomach were covered in a rash and it felt like my skin was swarming with crawling bugs. My scalp started flaking the very next day. I think I know what that nearly undetectable level of tacrolimus does for me.
Dr. K. told me to stop the taper after Chris persuaded me to report the rash. She prescribed some steroid cream to help control the rash while I wait for the tacrolimus to bring my system back in line.
As for the missed bone density scan, I was able to get worked in after seeing Dr. K. Because it was the very end of the day, the results weren't available before we left for home.
I'll post when I know more.
Sunday, March 4, 2012
Inching along
Friends, I am still here and I have not abandoned the blog. Those who've been following along might remember the car accident from November. I only just got my car back from the body shop after 3 months of back and forth with the other driver's insurance company. The body shop was great and would contact me once a week to let me know what was going on with the car repairs. The individuals who were handling the property damage claim were slow to authorize repairs. The body shop couldn't proceed without approval. It was a vicious loop that held my car and myself hostage for 3 months.
I am still suffering with injuries sustained in the wreck. The case is still open and I am being represented by an attorney. I haven't blogged about my treatment because I've felt uncomfortable doing so given the circumstances. I am under the care of a fantastic internist and have been attending physical therapy. I can't comfortably write much more.
As for school, midterms are upon me, and my semester long group project continues.
There is another marathon visit to MD Anderson on the horizon. I'll be seeing the cardiopulmonary team about the GvHD affecting my lungs. I'm still on inhaled steroids and continue to carry a rescue inhaler. I suspect that a complete pulmonary function test will reveal no change in my breathing situation.
I'll update the blog in 2 weeks after my visit.
I am still suffering with injuries sustained in the wreck. The case is still open and I am being represented by an attorney. I haven't blogged about my treatment because I've felt uncomfortable doing so given the circumstances. I am under the care of a fantastic internist and have been attending physical therapy. I can't comfortably write much more.
As for school, midterms are upon me, and my semester long group project continues.
There is another marathon visit to MD Anderson on the horizon. I'll be seeing the cardiopulmonary team about the GvHD affecting my lungs. I'm still on inhaled steroids and continue to carry a rescue inhaler. I suspect that a complete pulmonary function test will reveal no change in my breathing situation.
I'll update the blog in 2 weeks after my visit.
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