Umm...hello

This blog has become like a creaky old sign that no one reads covered with spiderwebs and swaying in the wind and for that I partly apologize.  But remember...you were amply warned at the beginning!  I guess the reason for the dearth of posts is that every day is so different, and frankly, there aren't a heck of a lot of awesome or fantastically exciting ones.  It makes me feel unlike myself and prone to doing macabre things like reading "The Road" and staying in bed all day watching documentaries on vanished ancient peoples or the origins of the universe or Ghost Hunters.  Or worse, House Hunters, where I get angry at every damned granite counter top.  I don't laugh or smile much and I can even see in pictures how out of practice I am.  I am so unfunny that even Luna fake-laughs at me...this ridiculous cackle that embarrasses us both a little.  It makes it hard to write because who wants to hear about that crap?  Although you just did.  So, onto the physical updates.

My counts are still holding in the normal-ish range although I am still not making red blood cells very quickly.  I had a transfusion last week that I really needed.  Fatigue still plagues me.  I am getting a tiny bit stronger and can walk to clinic again.  But I HATE doing my physical therapy.  I'm sure I'd be doing a lot better if I'd do my exercises or at least some yoga, but the motivation is elusive if not impossible to find most times.  It makes me feel lazy and guilty.  Getting in the shower takes all my energy.  Of course, Seattle in the winter is not a very happy place to recover.  It could be (weather aside of course) but everywhere that holiday events are going on are places that are probably too crowded for me to go.  I foresee a lot of driving around looking at lights in my future.

I sound like such an ingrate.  I hate this.

What else.  My mild GVH rash is gone although my skin seems really red all the time and occasionally I am randomly itchy.  But it's not much to write home about.  I have had some stomach issues that don't bear retelling but they seem to have mostly resolved.  Other GVH has yet to show up, but a little would be okay probably.  Just as added insurance that the graft is also still ready to fight any leukemia that pops up.  I had another Ommaya injection on Tuesday and my doc put me on a new steroid regimen for it that will hopefully control the excruciating back pain better over the whole 2 weeks of the chemo release this time and I won't have the long set-back I had before, which I don't even know if I mentioned in my last round of belly aching.  It may soothe you to know that my doc will be in Cabo that entire time.  Sure makes me feel better.

I managed to skip the 2 month wait for the psychotherapist and now see her weekly.  She's really helpful in helping me manage my expectations for recovery.  Which is going to take a really long time, probably 6 months to a year to just regain energy.   Mentally, who knows.  I would hope I can return to my yoga practice, but I admit that my therapist and I have also discussed other options in the meanwhile.  I've never been on anti-depressants but am trying to keep an open mind... anything that could help me on one front could help me fight another better.  In the nearer meanwhile, I have been more diligent with breathing and relaxation practices which at least is helping me sleep a little better.

For Thanksgiving, we had 7 guests: my aunt from Montana, my aunt and uncle from Minnesota, my parents from Carson City, and my aunt and uncle from Arizona.  It was great having them here, even though I was mostly propped up in in the living room like a giant doll not really entertaining anyone.  But we knit and lounged around and watched Luna spaz out for a few days so it was nice having them here.  They did all the cooking and it was great.  I even made an arduous walk down to REI with them, which involved lots of stairs.  They all left this morning and needless to say, I've been in bed all day today.  I want to include a nice paragraph of gratitude in this blog, but I just can't.  It's too too much.  Too many people have done too much.  You jerks!  I am supremely grateful to be here still.  The fact that I am is primarily due to Brett.  It's absolutely ridiculous what he has to do for me all day every day. And my sister; we'd be lost without her help with Luna (and my morning coffee), and Luna, who helps me up from chairs and sits in bed with me for breakfast and watching Dora the Explorer every morning and invites me into her room to "play" at night.  And I have to send my deepest thanks to the cord donors that saved my life so far.

For those who are counting, I'm at 60-something days post-transplant.  So clearly I'm not counting.  My day 100 will be Dec. 31, I think.  I'm not sure when I'll be officially cleared to go home, but barring infections and etc. it should be somewhere around there. 

On a final note, one day at clinic I met a guy 11 years post-transplant.  He wasn't a lot older than me and was doing great.  It was inspiring.  The next day, I met a girl in the elevator who was probably 18 or so who was 100 days past her 3rd transplant and giddy to be finally going home.  I guess that's why they tell you to take it day by day.  The range of possibilities for the future is so overwhelming.

I hope everyone had a wonderful Thanksgiving.  Thank you all.

Better days, for now

As predicted by my nurse, I gave myself 2 weeks out of the hospital to BEGIN to feel a little better.  And I actually have.  My mom was here last week which was nice.  I don't see the progress that Brett and my team has been seeing, but I do read my counts.  And mine are going up little by little.  I am actually making platelets which means no transfusions for...I can barely remember the last one and I don't seem to need one in the foreseeable future.  I'll probably still need red blood once a week or so since those take longer to make, but they don't turn over as fast as platelets so don't need to be transfused as often.  So I'm on a 3-day a week visit to clinic now instead of every day.  That's kind of nice.  My energy level is higher, but is such that when I do push it a little bit or do something, I am completely exhausted that day and the day afterward rather than energized.  So after Luna's busy Halloween weekend, I'm a little shot.  But I realized in clinic today that I actually smiled during my team meeting and joked around and I can't remember the last time I've done that.  I also had an Ommaya injection (head port chemo) on Friday that went pretty well.  They've decided to continue these for a few months since the CNS is a potential place to relapse.  The upside is that I'm on steroids for that again and they have incidentally cleared up my rash and boosted my WBC and ANC counts.  So no shots for awhile!

I actually don't have a lot extra to add to this post, just a couple of good things.  Anything can turn on a breath in this game though, so I try to remember I can be back in the hospital with a fever at any moment.  But I've kind of been relearning the old one day at a time trick that I learned when I first had leukemia. I'm kind of learning to deal with yet another new kind of normal.  And I'm sure it won't be the last.

By the way, I reread my older posts last night and I don't know how that incoherent drug-induced post after transplant made it past the editors.  I also suspect that I sent some questionable emails but I'm too scared to check my sent box so let's just put it behind us if you received one, hmm?