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?


Jody said...

Your descriptions - as always - of what you are experiencing are amazing to me. You have the gift to help us understand what you've been through. You are always a mistress of the understatement so I know when you say "it kinda sorta hurt" that your discomfort and pain was intense.

I'm grateful that difficult time has passed. Passing time can be a beautiful thing.

And your cats are running the show? Thumbs up.

With love,

JenK said...

Ann, you party like a rock star. I'm sorry this healing has been so difficult for you. We all wish we could absorb some of that pain for you. Love you mucho.

John said...

Dear Ann,
You have been through so much and still have the strength to talk about it. That alone means that you are an amazing person. Hoping that your tongue feels better and that your genes settle down.

Joanne said...

Ann, just read your post and have to say only this: you are a brave and beautiful soul. We all love you and root for you every day. Xo

Ronni Gordon said...

I remember that my tongue took a long time to heal too. Eventually it does feel better. Glad your margins are clear and you can put that little adventure behind you.

Anonymous said...

Hi Ann,

We at SAMAR would love to speak with you.

I just emailed you, but it was a hotmail account.

We hope to hear from you soon!


PJ said...

Reading your post brought it all back to me--your trials and mine. We're still here; that's what counts. Love to Chris and the kitties.

Nancy said...

So happy to hear that the margins were, indeed, CLEAN! Thank you for going into the details of all your trials and testing for Faconi's anemia. I hope the news is good when the results are received. And, a normal PFT?: Awesome girl. Ann, you've been through so much, but as everyone can see, you remain positive. I can feel you smiling through your words. Keep it up.... love you lots! nancy