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.


PJ said...

I think you should re-name your blog Unicorn Assassin.

For me, every new freckle is melanoma. We have to trust our doctors and ourselves about any and all symptoms that seem fishy.

Facing Cancer Together said...

There are so many aspects of cancer that just don't go considered. I hope the tongue spot goes away after being filed down. Good luck!


Ronni Gordon said...

Great to see a post from you. It's great that you're working again and that your blood work is normal.

As for the tongue, if it is something then they have caught it early. I went through something like it where they said it was some early stage cancer, removed a part of my tongue and finally said it was pre-cancerous although it did have to come out.

And hopefully yours is just nothing anyway.

Anonymous said...

I just passed my 4 year anniversary on Sep 5th. We were one day apart. I am glad you are doing well.


LPC said...

I admire you so much. The way you have incorporated this experience into your coping patterns with intelligence and humor - might not feel perfect to you but still so much to be proud of.

Jody said...

You constantly amaze me. You have this awesome way of dropping humor bombs ("color me suprrised") in the most unexpected places. It's only after finishing your piece that I realize how much you said in such a short space.

I'm rooting for more trauma, more trauma - clink!

Love and admire you so much,

Nancy said...

First of all, why the heck does trauma to the tongue have to start with "Leuko...". to us, thats a scary root word....

I'm voting for trauma. I asked my hubby who is a dentist, it's common. Hopefully, it will resolve after filing the teeth.

Glad your counts are doing great. It's good they are trying to taper the tacrolimus again. Hopefully your system can hang on its own without the tacrolimus. I'm hoping for very little GvHD for you. I still get it on my face and arms sometimes, but I almost ignore it. My bad...

Looking forward to good results from your bone marrow aspiration and the molecular study

And thanks for reminding me to get my flu shot. I have to get it too. I agree... Pfffft...

Take care & thanks for continuing your great blog! n