From the Trenches

A quick update from my latest Seattle adventure, lazily written as a bulleted list:

• First thing Monday, I got a blood draw and had an IV placed for sedation for my bone marrow biopsy.  Although the IV had to be painfully reset several times, I was fairly excited at the prospect of having IV sedation for my biopsy.
• Counts were good, especially WBC which were 5.1, and neutrophils which were 4500.  All red blood cell counts continue to go down, although creatinine was also down to 1.6.  
• My doctors are all delighted with my progress, or rather, lack of further degradation over the past year. They were so impressed with my strength and range of motion that they said I could cancel my physical therapy appointment.  As my nurse practitioner said to me, with a raised eyebrow, "I know you already know what to do."  I'm assuming that means that although I'm doing okay, once-a-week walks will not suffice.  There was some loose talk about tapering off my meds, which will be discussed further on Thursday.
• My doctors also marveled at my skin sensitivity and head problems.  Removing my Ommaya port in the future was mentioned as a possibility.  Nothing can really be done about my skin in the meanwhile.
• My dentist told me she would allow me one cleaning this year.  I have to be careful though, because I can get pneumonia from it.  I can get pneumonia from pretty much anything, apparently.
• Had to open my big mouth and blab that I had never had IV sedation for a biopsy, so I was told I wouldn't have it this time then, either.  Just oral sedation.  IV is painfully taken out.
• Had a cafe tuna sandwich which is pretty much all I ate for the 3 months post-transplant last year.  I have been looking forward to one for 9 months...no other tuna sandwich is quite the same.
• Went for bone marrow biopsy, and had only oral and local sedation.  Biopsy unpleasant as always.  They also decided to take a skin punch out of my forearm to check for GVHD, a procedure which is exactly as gross as it sounds, and thus added to my growing collection of scars. 
• Later that day, I became reacquainted with my tuna sandwich from earlier, probably courtesy of the fentanyl.  I spent the rest of the day in bed with a bowl at my side.
• The following day, I had an eye exam that was largely uneventful.  No GVHD in the eyes.
• Today, I had a bone density scan, a chest x-ray, gynecologist appointment, and nutritionist consult.  There are no real results from these yet, except (sadly for you) the gynecologist.  Apparently, either I have a fibroid or polyp or something, or my ovaries somehow picked themselves up by their bootstraps and started working again.  I now have to have an ultrasound and stop my hormone replacement therapy to find out for sure.
• We took a free ride up the Space Needle and the day was clear and beautiful, but cold as ever.  
• We are enjoying 5-star accommodations at the Hunter-Cobb household during our stay.  I highly recommend them should you ever find yourself in Seattle.

I'll hopefully find out the rest of my results tomorrow.  I will also be getting my kid vaccines tomorrow.  Six of them I believe.  Seems that that could lead to all sorts of nastiness, but let's remain optimistic for Pete's sake.   That's all the energy I have for tonight. More later...

Love, Jessie

P.S.  3 question have been submitted so far.  Remember, I'll answer anything, no matter how inappropriate it may seem!

Happy Birthday to me

One year ago, a few hours before my stem cell transplant, I felt like this.
Yesterday, when Brett asked me how it felt to be a day away from Day +365, the best I could come up with was, "It doesn't feel like anything."  Which, admittedly, isn't very enlightening or inspiring; in fact, it is a little disappointing.  How typical of me.

I tried to give it some thought today, when I wasn't busy doing other things to try to distract myself from having to give it some thought.  And I came up with two things.  The first thing is, I don't really measure my progress like that.  I'm certainly not nay-saying milestones.  I like a good milestone as much as the next guy.  But my milestones are more about everything except the transplant.  For example, I've seen loved ones get married.  I've seen my daughter learn to tell stories, draw, write, and argue with me WITHOUT END like she's Clarence Darrow or something.  I may actually finish reading the Song of Ice and Fire series.  I saw friends' babies born.  I've made new friends.  Even things like, "Wow, I thought I'd already laughed as hard as I could laugh," or "Ok, this was definitely the worst I've ever felt in my life" are points in time that are significant to me.  I swear, I come to a new milestone almost every day.  So I guess each new day is a milestone; and that's no different from today.

Now, if I had overslept or something a year ago and somehow missed my transplant, I realize none of these milestones would have happened.  This brings me to the second thing: gratitude to my donors.  Some amazing mothers in hospitals both here and halfway across the world agreed to donate their child's umbilical cord to a public cord bank.  They could have banked them for themselves, or said, "That's weird.  No way." but they didn't.  And they won't ever really know that they gave someone at least a whole year of a ridiculous amount of milestones.  I hope somehow, in some way, I'll be able to pass along a tiny portion of their generosity.  This gratitude extends to all of you that joined the donor registry with yourself or your babies' cords.  I hope you realize what and incredible, stupendous act of generosity that is.  It is! 

Oh, and what is a birthday party without games?!  I been wanting to do this for awhile, and today feels like the right day to do it.  This game is called, "Everything You Wanted to Know About Having Cancer*" (*but were afraid to ask).  For the next week or so, I'll be in Seattle for my 1-year follow-up appointments.  During that time, you can ask me absolutely anything about leukemia, transplant, this blog, etc.  And I will answer all questions in a post after I get home from Seattle.  And I mean anything!  Like, "What's your favorite narcotic?"  "Did you write a will?"  "What does it feel like to get chemotherapy and/or lose all your hair?"  "Do you think your boundless positivity and consistently upbeat attitude has helped you?"  I promise I will answer as truthfully as I can.  You can email me questions (jessiequinn at gmail dot com).  Or, you can ask in the comments section.  I can't think of a way for you to remain anonymous to me (if you can, great), but I won't publicize who asked what question.  Nor will I hold it against you or think you're strange for asking.  So this game requires audience participation, people!!  If no one asks anything, I'll be forced to blog about the same old "my blood counts are up/down/the same" "I think I'm relapsing/oh wait, I'm not" "I have another rash" for the foreseeable future.   So make with the questions.  It will be fun...ish.

Expect updates while I'm in Seattle, but also be prepared not to actually see any.  I really will try, though.  I'm going to go ahead and put it out there:  I'm as nervous as a cat in a room full of rocking chairs, but I'm looking forward to it at the same time.  Onward and upward, as they say.  But mostly onward, in this particular case.

Love and love and love and sincerest thanks to everyone who has been with me through this.  You have really literally been with me.  I can feel it every single time I have to summon up my determination to get through each obstacle and make my way to the other side of every fearful moment.  I appreciate it with all my heart.