Just When You're Feeling Confident

So today was my husband's six month post-bone marrow transplant results from the bone marrow biopsy they did a week ago, Friday.  That's a sentence and a half.  Going in he was of course understandably nervous, as he usually is with doctor's appointments these days.  Today we were both rather nervous as this set of results sort of paints the picture if you will of how the rest of your recovery will go.

So to really set the scene, we were a couple of minutes late because he spent the morning in immense pain from some sort of nerve issue going from the back of his hip down his leg.  This issue actually called for a trip to the ER on Saturday which was just to waste four hours of our lives, be informed that he didn't have a fractured hip (which we had never suspected in the first place) and being sent home no wiser than we were upon arrival.  So it carried on and this morning he was in a lot of pain.

We get to the office and they have you arrive an hour early to do general labs before an appointment, Tom overhears someone get told the lab is running about forty minutes behind... great.  As if the anticipation isn't working up enough anxiety as it is... his appointment was already for 11:30 which meant a large chance of them "going to lunch" and us having an extra hour of sitting there.  Luckily for us that scenario didn't happen.  We got called back probably forty minutes behind schedule, but better than an hour and forty minutes behind.

Dennis (the assistant of some sort) starts by taking Tom's vitals.  In between his random comments the only thing making a sound in the room is the rumbling of the air vents and Tom tapping his foot rather quickly to ease the anxiety.

The doctor comes in and starts with some small talk, asking about the weekend and then going on to discuss Tom's back.  I can't speak for Tom, but I know my inner dialogue was screaming, "Just tell us the news already!!!! We can talk about the reptile show afterward!"  So after his small talk there was a rather awkward pause.  The doctor sits in his short wheely-stool and looks at his notes.  He starts off by telling us that Tom's biopsy showed a 99.08% donor cell read (down from what was I believe 99.97% or so), but said that for this time frame post-transplant that 99.08% is also good.

Then came the big news... the biopsy yielded some leukemia cells. Tom's head just dropped in sync with my heart. He said it was less than 1% and that they were early developing cells only caught by a certain protein they had on them.  Ordinarily (if it hadn't been for said proteins) they would have been dismissed as normal "young" cells. So I suppose there's a slight bright side.  He feels confident that with it being so early and so few that it's treatable.

The treatment plan might be a bit sketch, but I suppose what are you gonna do?  The plan is to have Tom stop his graft vs. host medicine and purposefully induce graft vs. host disease.  The idea being to have the immune system pipe up and fight these abnormal cells.  He feels confident that this will do the trick.  It will just take close monitoring of Tom in the meantime to make sure that it doesn't get out of hand and shut down any organs, etc.

In about a month they'll do another biopsy to see where he stands.  If it hasn't done the trick it may be necessary to follow up with some chemo and possibly to top up with some extra donor cells.  Let us hope it all works in such a clean and straight forward way as the doctor has laid out.

It's hard to not try to force some sort of rationalization onto all of this, but it's the hand we've been dealt and we'll keep playing forward.

The Transitional Period

So here we are, for the most part Tom is doing stupendously well (knock on wood).  The doctor is so pleased with his progress thus far and has said if things continue he'll be back at life in no time really.  That said, he's just finishing up some pre-cautionary intrathecal chemo treatments (in which they do a spinal tap and withdrawl fluid from the lower lumbar and replace it with chemo drugs).  They do this because sometimes leukemia has been known to "hide out" in the central nervous system and come back later.  Luckily, Tom has never had his spinal fluid that they withdraw yield any leukemia (again, knock on wood), but they do a number of these treatments just in case there's even one in there and they can get it.

That said, while everything else is doing well, these can sometimes result in a spinal fluid leak causing immense migraines at the change of position and vomiting, etc.  So since Monday (number 2 of his last 5 of these treatments) he's been feeling immensely awful.  He's unable to do anything but lay down which is of course no good and sitting is definitely the worst, but when he stands these powerful headaches rush to his head and send him dizzy with pain.  So there's a lot going on and it's trick as the meds don't help when it comes to quick come and go pain like that.

So anyhoo, he has three more of these joyous things to do.  In the meantime, he was doing so well and is doing so well (as it's only due to these treatments that he's poorly) that I began the job hunt.  Today I officially accepted an offer (after turning a couple down).  Part of me continually wonders if this is a good idea, but then part of me thinks I won't know if I don't do it and I suppose I could always quit but if it's working out then we'll have some extra money and it'll get me out of the house.  Tom is planning to spend his spare alone time possibly volunteering with the leukemia and lymphoma society since he is one of their honored heroes for the local fundraising walk this year.  It's a strange time. 

I've officially let my manager of the store I was working at for Starbucks know that I won't be actually coming back and so after 7 1/2 years of employment that's kind of bizarre.  From High School through College and then some... Life beyond the barista apron should be interesting, not to mention pricey if I find myself needing an extra pick-me-up here or there.  **sigh** I suppose this is all just part of the process, sort of a rebirth of life for us and we're trying to find our feet and figure out how to make this all work out.  It's a bit nerve racking but exciting at the same time.

That's me done today.

Time for the Next Chapter

So on Friday I'll be officially released back to full duty at Starbucks... of which I don't plan to return so today I let my manager know and I suppose that means my black apron has been hung up for good.  Super bittersweet as some of my best relationships or inspiring moments happened through Starbucks, December would have marked 8 years of employment (though I've been on leave for almost a year).

Part of me felt that I was ready to go before Tom's diagnosis so I should be okay with going now, part of me feels like it's been awhile coming but it's such a part of me it was too hard to leave it, and part of me feels like this has been one heck of a year and maybe starting completely fresh is what's needed for this next chapter.  We've both been doing some recovery, me for my hand and Tom with his leukemia/bone marrow transplant, it just seemed like good timing.

So what's next? That's a fantastic question.  I have a few irons in the fire and I think in the next two weeks I'll have the more solid answer to that, but it's exciting. Lots of ideas to play with, plans of action, etc. Not only did the doctor tell Tom that he's pleased with him, but apparently if he gets through these next three months alright (making it to the six month mark) he'll be over the largest danger zone. He even went as far as to say that Tom could probably travel after that time as well (when originally he said it'd probably be more at the year mark).  So that was really awesome to hear. We are so blessed and so lucky to have him doing so well, we've heard of a few casualties recently and really there's no rhyme or reason so we are so blessed to have been on the other end of those statistics (knock on wood... let's hope his good health continues).

I think his attitude has had a great deal to do with it, but having said that one of the ladies who was smashing everyone's records has now lost complete feeling through her body and also her sight, rendering her back into the hospital.  Things like that are frightening.  They even had her go to UCSF for some extra opinions and whatnot and they just said it must be from one of the medicines that was used. Apparently another guy had the same thing happen to him and has only recently (a year later) regained those things and is receiving therapy to work on coordination, etc. I couldn't even imagine!  So we are so unbelievably grateful for Tom's well-being.

Anyway, enough about him! This blog is about me! Like I was saying... I'm really excited.  I'm considering a part time job and mixing it with grad school and I'm also interviewing for a full time position as a site supervisor that would be good, so we'll see!  Prayers appreciated! I'm excited about this new chapter.  Tom doing well and nearly finished with all of his treatment, new job for me, he might start volunteering... I think this year has a lot of promise left in it!