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?


Avital and said...


These mouth sores sound like a bitch. Does anything make them less uncomfortable??

I am sad to hear that you won't be visiting this winter, but I'm super excited for you to come in the spring when the east coast weather is actually tolerable!

regarding cataracts: it really is NOTHING. you will be fine. and the best part is the funky ENORMOUS dark sun glasses you will get to wear EVERY TIME YOU GO OUTSIDE!! When you do have the surgery, make sure to take LOTS of pictures!!

And I love you. Keep hanging in there.


Samina said...

science fiction ... sounds scary to me. i know i'm supposed to be encouraging on these posts, but it really is overwhelming and it still amazes me how you deal with all this stuff. the jargon and the constant bombardment of new things to worry about only offset by little bits of good news. of course the best news is that the cancer is gone. thats big. but good health ... such a blessing. let all of us be grateful for what we do have.

i love you and miss you,

artineh said...

wow, that was a lot to swallow. How you make sense of all of that every time you visit the doc is beyond me. I'm glad there are no major issues and that you're finding ways to deal with the little guys, as annoying as they are. Hang in there.

So air travel is out (and in a way that's really a good thing... I just sat through 18 hours of it and it sucks!!) but is RV/road tripping a possibility? Maybe you can travel by freeway? Or we can come visit. Speaking of which, I'm going to email you to see when might be a good time for me to come up north. I have a conference in SF in November but I'd love to come before then.

love ya,

Abby Wood said...

Sending love to you. To your liver and your bones and your ovaries and your eyes and your mouth and even those darn sores.

Geez Louise. As soon as I emerge from this test, we're gonna do some yoga or something.


P.S. The rose you gave me at Cathy's funeral is blooming beautifully. So there's that. :)

P.P.S. French toast had its downsides yesterday. I was soooo tired after I got back.

OK, enough with the chitty chat. This is a blog, not an email, for crying out loud!

Katie Windle said...

Oh E, even after reading of the issues that you are struggling with, you make sure we finish reading your entry with a smile.

Picking out glasses will be FUN!

I can't wait for lunch on Wednesday.


slucas said...

What does a nerd smell like? I have some idea, but...

Love you,

Anonymous said...

How you deliver such news and make me laugh at the same time, I do not know. I send those good vibes from you making me giggle to heal what ails you.

love, laughter, and mischief!

Rachel said...

Too bad there's such a long wait for those super-sweet Sarah Palin glasses...oh man...looks like you'll have to go for something else instead!

Anonymous said...

Hey E,

You're one strong, happy, amazing human being. I agree with all the others: even when the news are not as we'd all want them to be, you keep that lovely sense of humor.

... And you still make us laugh! I hope those freakin' mouth sores go away soon! Bad, bad sores!

Love you a whole bunch and miss you,