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?