Tuesday, September 30, 2008

Mouth Punch Biopsy

I still have strange bumps on the roof of my mouth that usually appear while I eat. They are often painful and irritable. They vary in size and hardness but are filled with what seems like salt water. (?)

They're tough to show you, but take my word for it.

So, I was sent to the Ear, Nose & Throat doctor. He, like everyone else, was mystified. If you look carefully at this shot, you can actually see the little opaque bumps up there.

First, he wanted to make sure it wasn't some nasty virus seeping up through my palate into my sinuses or, worse, to my brain. To do this, he had to numb my nose with spray anesthetic and then insert this long-ass tube camera up there. NOT fun.

Yay! No brain virus. But what are they? Me, eager for the upcoming "upper hard palate punch biopsy".

He hole punched out a block of the roof of my mouth about 1 cm cubed.

Then they very dexterously stitched me up with unnecessarily long floss-like thread.

There's the hole.
It healed very quickly and with minimal pain. Unfortunately, the results came back revealing... nothing. It ruled out some specific things (such as GVHD), but did not identify any other causal specifics.
So, he had me come back and do it all again- that time with two bigger punches. Again, the results revealed nothing. He suggested taking yet a bigger piece of my hard palate, this time under full sedation and possibly using a graft of skin from behind my ear if we inadvertently expose the bone (!), but...

My BMT doc seems content to call it GVHD and I suppose I agree. There are countless ways a body can give the finger to its invading graft cells and one of mine is my mouth bumps. My doctor and I hope that it'll just go away when it's ready, but I hope in the meantime to stop the futile steroids that simply are not the right anecdote.

I'm pretty sure all of this is just balancing out for the fact that I've never had any dental work done ever- not even a cavity filled. I now understand the terror trips to see the dentist can elicit in people!

Friday, September 26, 2008

Medical Update / Science Fiction

Sorry for alluding to recent doctor's appointments and not following up with the deets until now.

At my last clinic visit with Dr. Miklos, I learned that I will not be able to fly until well after the time the "book" mentions as safe (six months post transplant- November) because I have had to be on all of these immuno-suppressants. These drugs take a long time to taper to avoid other complications. So, should I begin successfully lowering my steroid doses imminently, as we have planned since they're not seeming to do squat for my GVHD symptoms, I won't be in a safe zone until perhaps mid-Spring 2009. My doc (pictured here) is convinced that being in a chamber of recycled air with 350 strangers for several hours is a prescription for infection and while I am 110% behind him on being conservative, my wanderlusting personality plus the fact that my friends and family live all over make me crave distances only accomplished by air. It's OK though, these people and places will still be there in May, June, the rest of my life.

Secondly, I was saddened to confirm with him that I will not be able to go on hormone replacement therapy until at least a year post-transplant. Estrogen messes with your liver and during this time liver concerns are paramount. We don't want anything altering their ability to test how my liver is reacting to its new system. Why am I sad? Well, due to the radiation and chemotherapy, my body has basically undergone premature menopause. My body is supposed to produce hormones for around another twenty years, so basically I'm going to crumble into a crypt person by age 31 if I don't do something about it! Ok, so maybe not a crypt person, but here are some things that HRT could help:
  • I'm already osteopereunic. HRT helps prevent osteoperosis (bone loss).
  • heart disease
  • high blood pressure
  • vagigi dryness
  • eye dryness -- i'll come to my eyes in a second
  • short-term memory loss
  • hair thinning
  • increased facial hair- always sexy
  • slowing metabolism
  • high cholesterol (having this checked in a couple weeks; not sure if its an issue yet)
All of these fun things you shouldn't really have to worry about until you're also worrying about your retirement payouts and grandchildren's jumper sizes. I know HRT is not a magic arrow, but for young people undergoing premature menopause it's a no brainer. I wish I could start yesterday.

What else? Since the mouth sores haven't improved, we are experimenting by incorporating ANOTHER drug into my regimen. (I would say that the mouth bumps have not changed much quantitatively, but perhaps qualitatively, as I've grown used to living with them.) I love my doctor for many reasons, but one of them is that I know his brain runs on high-octane super fuel and he's always evaluating my condition based on a million different scenarios/drugs/causes that he personally knows and probably has researched personally and probably won some award for.

Anyway, he often forgets that we are mere humans and torrents of technical medical jargon come spewing from him as he orally postulates what next to do with this strange girl with disobedient mouth sores. It was interesting to hear all of my options for drugs, their various pros and cons and also to realize that their operational platform relies on defining the type of GVHD I have and they can no more easily do that than presecribe a cure. Because mouth sores often afflict people more than 100 days post-transplant, there's a tendancy to call what I have new-onset chronic GVHD. But, since I presented with this well before 100-days, they are examining if I am now in fact dependant on the steroids; in other words, the bumps and the steroid level are at some kind of equilibrium whereby decreasing the drugs will increase the problem. This is called steroid-refractory CGVHD. Anyhoo, he settled on a mycophenolic acid immuno-suppressant. My pill box is bursting and I may have to upgrade, but at least this might signal the beginning of prednisone (steroid) tapering.

Lastly, I also went to see the opthamologist. I have had blurry vision and trouble reading both up close and at a distance since I was in the hospital. Some told me that it was another gift from my good friend, steroids, and would go away when he went away. However, Dr. Ta had a different tale to tell. After I began to think he was just using my eyes as a palet for mixing various colored drops for painting, and then messing with me using lazer pointed lights and torture-chamber-looking facial attachments, he announced in a cheerful voice:

You've got retinal hemoraghing. Yeah, so I'll refer you to a retinal specialist.

You've got cataracts in both eyes. No, they can't get better. Yes, they'll get worse as long as you're on steroids. Implant surgery is basically an inevitability. No, you're fully awake during it, but it's an outpatient surgery and very common. Nothing to worry about!

Oh, and your eyes are really dry. So, we can't rule out that you don't have graft-versus-host-disease in your eyes.

Have a great day!

SUMMARY: Big issues- fine. Little issues- dealing. And I finally get to get glasses like I've wanted for decades. If it acts like a nerd, smells like a nerd, and talks like a nerd, it should look like one too. Right?

Friday, September 19, 2008


If you've visited me in B-game, you've probably met Cathy. She lived across the hall from us and was a dear friend of my Mom's before I moved in and a dear friend of us both thereafter. She, another woman down the hall, Harmony, Cathy's best friend June, and my Mom would get together nearly every night, in their PJ's and drink tea and chat. Amazingly, they all had so much in common- including 3 being nurses (all but my Mom), all having worked for Pan Am Airlines (all but Harmony) and all being Canadian (all but June). I called them the Golden Girls and took much solace knowing that my Mom lived in such a friendly environment where she could not only rely on her neighbors for the bare essentials, but almost lived in a dormitory-style environment, where loneliness was never much of an option.

When I moved here, I knew that Cathy had been battling breast cancer, but she was beating it. This photo was taken a few months ago- her hair at somewhat the same stage mine is at right now. Unfortunately, the cancer spread from her breast to her lungs and further to her lymph nodes. In recent months, she developed tumors on her head, outside her skull. Still, everything seemed treatable. There was radiation and chemotherapy planned. She was hopeful. I had just set up her new laptop and she was SO excited to start using it. She was planning on going on a New England fall foliage adventure this month.

I went away for a few days last week and when I came back, Cathy had done a 180. She was completely doped up on morphine, a hospice nurse was coming daily, and her friends and family were preparing for the end. I was shocked. Then, I was hopeful again. I mean, so she's on a lot of drugs to help with the pain? I was on so many drugs that I have about a 2-week memory blank from May, but I came back. Cathy will be no different.

I was naive. Cathy died this afternoon. My Mom and I came back from my own sobering doctor's appointment to see two men in suits walking down the hall from her apartment. My Mom stopped dead in her tracks and I, even having watching every season of Six Feet Under, didn't understand who those men were until Harmony came out of the door and told us that Cathy had passed away at 3:00 that afternoon and those men, of course, were there to take her body away.

I'd never seen a dead body before, but it wasn't scary or disturbing. I was glad to get to see her one more time before they took her, to stroke her blanched hands and kiss her temple. The loss of Cathy in our lives is going to be huge. She was an extremely special person, as kind as anyone I've ever known, so grateful for the tiniest of pleasures, for the tiniest of blessings. Her last name is Reveler and boy, did she revel. She loved being around my friends and somehow remembered everyone's name and details. I know that those of you who've met her can testify to this. I am a little bit in shock still, I think, but take comfort in the beauty of who she was, in my luck in getting to know her, and that she is no longer in pain.

This has been a cancer-saturated day.

First, I had to go to the nail salon because there is a woman there who is (in my experience) an expert in dealing with chemotherapy-afflicted toenails. She is this way because her 2-year-old has brain cancer. She insists I come in and she cleans up my dying nails, preventing and healing in-growns, and releasing the hardened dead nails from the new healthy ones- all without pain to me. And she will not take any money from me for this. We always talk about Katie, her baby daughter. She's currently at UCSF getting radiation.

Then, I played tennis with my friend Bess and found out that this little angel, Sophia, who I had met at Easter this year, had died from leukemia this week. She was diagnosed when she was two and died this week at age 7. She was one of the most beautiful children I'd ever met: bright green eyes, curly dark hair, and a shy sweet smile that called for love at first sight. I'm not sure if she was ever eligible for a bone marrow transplant, but, being a mix of african-american and white, her mother had told me that they'd had difficulty finding a match. Bess said her funeral was made into a celebration, with tons of children in attendance and everyone encouraged to wear bright colors and be grateful for sweet Sophia's LIFE.

Then, I went to my own clinic appointment, which I will write more about later. It seems like these souls deserve, at minimum, all the attention of a post. Cancer. Sometimes it feels like more than we can fight.

Tuesday, September 09, 2008


[Addendum: 9/17/08.
This is not supposed to be a political blog, so I didn't want to extend the Palin vitriol any further here. However, this piece was so resonant and thought-provoking to me that I had to share it.]

Original post: 9/9/08

When I and the nation learned of McCain's choice of running mate, I was a bit charmed by her shake-up-the-good-old-boy-establishment mission, her oratory skill, and well, the fact that she's a she.

In a matter of days though, I have grown to hate Sarah Palin. She's redundant, mendacious, and myopic. Not to mention she stands for 27 policies I disagree with. Her voice now sounds to me like screeching fingernails on a chalkboard and all I can think is: this shouting woman just got a passport last year!

If I could shout back at her, I'd say: Get off that pulpit and go home to cuddle your new baby with down syndrome and to teach your kids about birth control. Then take a few years to explore the thawed world: Brazilian favelas, Tokyo hostess clubs, Mongolian sunrises, Moroccan couscous. Then reassess what the hell you and your speech writers were thinking to mock the work of community organizers; take a moment to realize that a PTA volunteer and hockey mom is exactly that. That a politician is exactly that. Lastly I would tell her that her true calling, as anyone can see, is as a LensCrafters spokesperson and she ought to politely recuse herself from the VP race and hurry in for an audition.

This woman can take her hypocrisy and shove it where the sun don't shine.
(I'm meaning back to Alaska, you dirty mind.) Thanks, but no thanks.