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!

Congratulations Honey!  I love you!

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.

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.

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.

When real life intrudes

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

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

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

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

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

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

3 little numbers

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

985 for my mother.

314 for one of my oldest friends.

408 for my uncle and aunts living too far away.

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

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

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

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

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

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

MDA Recap

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

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

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

Here are the numbers for my blood work:

RBC: 4.01 M/UL  (4.0-5.50)

WBC: 7.5 K/UL  (4.0-11.0)

Hemoglobin: 12.3 G/DL  (12.0-16.0)

Platelets: 387 K/UL  (140-440)

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

My liver enzymes are absolutely middle of the road normal