Thursday, August 19, 2010

Second post...but don't get all excited

I still reserve the right to completely flake out at any time.

My last 2 days have been packed, I mean wall to wall packed with appointments between about 10 or 11 and 4. Which isn't really that bad since I'm home early, but is exhausting considering they cram 5 or 6 appointments in each day. Pulmonary function test, EKG, blood draws, financial consults... Yesterday's highlight was the "Why the F- would anyone do this" conference, otherwise known as the Informed Consent conference. This is where the good doctor goes over your treatment plan and cheerily lists off every possible side effect of the whole procedure, about 80% of which "could be fatal! That is, unless you're lucky enough to simply have a chronic condition the rest of your life!" And I'm like, "Sounds fantastic! Where do I sign?" That's the way it goes when you have no. other. treatment. choice. and a fatal disease that will most certainly come back in a few months with no treatment at all. So I don't really need the "WTFWADT" conference. All it does is freak me out, and anyway, what could they possibly tell me that would make me change my mind? Only that they planned on surgically removing each bone individually, replacing the marrow with a butter knife, and then surgically re-implanting it. And even then I'd be like, "Let me have another look at those forms..."

SO...back to back to back appointments and we are practically running between them. And everyone is completely efficient and on time and let me tell you I am totally annoyed by the well-oiled machinery of this place!  No time to read my book, the newspaper, play with my phone, or even gaze blankly out at Lake Union for Pete's sake. And if you are early, they're like, "Hey, I bet we can get you in early!" And they can!  The waiting room on the Transplant Floor is this semi-circle of floor-to-ceiling windows overlooking Lake Union from the 6th floor. And they have these cushy reclining chairs right at the windows facing the view so you can leisurely watch the seaplanes land on the lake. Or nap. Have I been able to partake of this luxury? Hardly.

Today's highlight was my bone marrow biopsy (you can Google the procedure if you want; this one they only took a sample of the fluid from my marrow, so technically it is a bone marrow aspirate.  This was my 6th one of these.  You can count them by the scars on my back below my bird tattoo).  The biopsy is important, as it's the only way to determine how much leukemia I have in my marrow.  For some people, chemotherapy gets them down to none, no detectable leukemia cells.  For me, they've gotten me down to very few, but I've always had some...between 4 and 2% abnormal cells.  Now, they still consider this remission (anything less than 5%), but I have no idea why anyone is comfortable with it.  I feel as though if there are a few, they could easily shoot up to 58% tomorrow and then where would we be?  Back to new and exciting kinds of chemo and a delayed transplant, that's where.  The doctors don't act that way though, and I suppose that I am expected to go along with them.  Anyway, we should get those results on Monday, so I'll be a little worried until then.  Also, any typos you see here are from the Fentanyl lollipop I had before the biopsy. 

Today I also had a MUGA, a heart test which is not very exciting except that I get a card afterward indicating that I will be radioactive for 3 days, and I am to show this card if I board any airplanes or ferries.  How embarrassing. 

Also, Luna and Jo arrived yesterday!  Now we can see how dysfunctional this "suite" really is.  We all have to go to sleep when Luna does and get up when she does.  We eat on the floor.  I like to pretend it's tribal and it makes it kind of fun.  Except for the Luna-sized mini fridge that she likes to open and close and open and close and open and close and open and close and open and close and oh my Lord we need to get into that apartment already.

Love to all, xoxo!

~jessie

8 comments:

kt said...

You're an amazing woman Jessie! And you have such an incredible sense of humor. I think of you all of the time and hope that you're doing well.

Nichole said...

I wish I had something poetic to share, but alas I don't. This shit tears you down to almost nothing and then somehow, some way you find yourself on the path to recovery. I obviously don't know you that well, but I can sense that your spirit is strong and that you are not one to trifle with. Sending healing energy.

Patt Quinn=Davis said...

I'm trying to picture butter knives replacing bone marrow...can't quite do it! I have been wondering how your days have been...Something eased in me when I knew Jo and Luna were with you...puzzle pieces put together and such. My week has really flown by. Teacher classes and meetings and class preparation all week. And all week a piece of me is walking along with you, with Brett, with Jo, with Luna.
Matt Morgan asked me today how you are. We talked about the crew you hung out with in middle school and high school. It was, as Matt said, the most ethnically-mixed group...or the only such group...in Carson City.
Brought me 'way back!

Julie Quinn Kiernan said...

You have such a humorous way of writing. The butter knife comment, I have to agree with my sister, is way creative! I'll picture you in the days ahead actually laying on one of those cushy recliners, able to contemplate a nap as you look out the windows (I am such a nap fan). I think of you constantly and am sending a care package this week.

Ms. Sabbadini said...

Hi-Larious writing about a serious deal. Maybe after this is over, you can be the next David Sedaris! I for one am glad to hear that place runs like an efficient clock because that would imply that they'll take good care of you!

Oh and I can relate to the one room issue -- first time we had Hannah in a hotel room we had to lay still and quiet for two hours while she poked her head over the pack and play and said "Hi" fifty thousand times. Now we stick her crib in the closet and put up a sheet : )

We got a hotel on Lake Union and will see you Labor Day weekend!

Murph said...

You consistently writing this blog is no longer optional. It's required. A cup of coffee and a dose of Peculiar Vacation is a fine way to start the day. Keep it up JQ.

LjW said...

Well that certainly is fun to read but not fun to imagine going through. I expect nothing less from your constantly witty self. Of course it's always an opportune time to turn it into something about me and how lame my dilemmas of the opening and closing and opening and closing and opening and closing of my mommy and daddy size fridge are. Thanks for allowing me to further self-deprecate.

The real question is how should I do my hair when I dress up as you for the up and coming super-hero themed party I may or may not flake on?

Mike and Kim Michaud said...

Hi Jessie,
A 'hello' from 6619 Del Playa. I am following your blog (which is amazing so far) and wishing you, Brett, and your adorable little girl all the best.

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