The Furuncle and other Misadventures

Where to begin...I think first I'd like to thank everyone that sent me private messages about their experiences with anti-depressants.  It really helped my decision to start one.  So...we'll see about getting over this hump.  One of my fellow transplantees' mothers was quoted in an article as saying "Transplant is like being dumped in hell and then being asked to crawl back out."  That might be a little hyperbolic, but it certainly resonated with me...

I am also at a point in recovery where all my counts go down and creep up again slowly.  No one is sure exactly why this "60-day slump" happens in transplant, but it makes it much less fun to hear my blood counts. Nothing is worrisomely low yet.  Neutrophils are low of course, but I still have enough for some immune response.  Platelets are good, red blood down just a little.

To add to and emphasize my point that if it's not one damn thing, it's another:  last week when everything had been going along without event, aside from random nausea here and there, and of course the raging depression and general sleeplessness, I noticed I had some pain in one nostril.  It was definitely just one side, and further investigation (with a TISSUE of course) revealed old blood.  Now, remember that I was radiated across my whole body within an inch of my life 75 days ago, so I am a very dry, desiccated person.  Always peeling or something somewhere.  And not too long ago, my platelets were chronically low so I was bleeding everywhere between transfusions (not to make it sound too crazy.  It was bleeding under the skin, on my eyes which was kind of gross, that sort of thing.  I had a real nosebleed in the hospital that lasted hours).  So that wasn't a huge surprise to find old blood assuming the skin had cracked up in my nose at some point. 

The pain continued, though, and I would check it from time to time to see if it was bleeding up there or something.  Then one day, I noticed that the nostril in question was swollen (if you're thinking it was because of my repeated investigation, well, probably.  I don't know.).  However, MY first thought was that it was more leukemia.  I think I will think that about every ache and pain for a very long time.  That a few cells had somehow hidden out in my nose through transplant which would have been a very good idea for them and there would be no way to treat it since my body is still weak and my marrow is still new and my organs are tired...and so it would just spread if it hadn't already but there would be no treatment... [and there you have a pretty good example of the potential downward-spiraling thinking that every cancer patient probably knows (you end up working very hard on ways of thinking/being that avoid this spiral).] 

So anyway after day two of this swelling, and my ruminating about it constantly, I made an appointment with my nurse, who had me come in right away.  Surprisingly, my whole team showed up sequentially to look in my nose.  My nurse didn't know what it was.  The PA didn't know.  Then the attending took a look and said immediately "Oh!  It's a furuncle!"  He's Croatian I guess, not a terribly heavy accent but definitely an accent. But I couldn't believe such a ridiculous word could be describing a medical condition, and maybe I wasn't understanding correctly, so we went a couple of rounds of "Furuncle?" "Furuncle!"  before he said "It's a boil.  It should probably be lanced.  Put her on an oral antibiotic and let's get her over to a nose guy."  And he left with a flourish because that's just how he is.

They did get me in to a ear-nose-throat guy over at UW immediately, which is actually called an otolaryngologist if you want to be respectful.  The resident came in, had a look, and confirmed the furuncle, but wasn't sure if we should lance it or not.  We waited a while for the attending to come out of surgery and the resident asked about the history of my disease, which I get so tired of telling, and FINALLY the doctor came in and also thought against lancing it given my weakened immune system.  They confirmed I should take a course of oral antibiotics and also use a topical one a few times a day, and if things don't improve in a week and blah blah blah...and we went home.  Seven hours of doctor's visits absolutely wiped me out.  Also releasing my mind from the idea that I still had leukemia was exhausting.  I've been told my cancer was something else before, so its  hard for me not to retain a tiny bit of dubiousness...

So, furuncle aside, last week I also cut short my steroid course on the advice of my attending (he advised me as such: "You have been on steroids too long.  Stop taking them."  And my neuro is in Cabo, remember, so there's no consulting him).  I then spent the weekend in the throes of incredible headaches.  I kept thinking about the potential side effects of pretty much every medication or treatment I've had.  "May cause vomiting, diarrhea and severe headache."  Saturday night was pretty much that, simultaneously.  Although the vomiting was probably from the painkillers, which I think I've mentioned before, I hate taking.  So let me add I was dopey and emotional from taking those and finally I was clawing for the steroid bottle.  Now, I'm not a fan of steroids either.  I have a big round face from this little bit and they play with your blood counts.  But they work for when your brain tissues are trying to explode out of your head so they seem to have their place.  At some point, I was able to sleep a little I guess, the only good part about painkillers as far as I'm concerned.  Sunday of course was mostly spent in bed feeling utterly defeated and beat-up, but I did take my steroid, and was able to make a short foray out with the Hunter-Cobbs to look at a house (I have been watching WAY too many Househunters to miss out).  Still some headaches, but not the reduce-me-to-tears kind.  And Sunday night, I actually slept through the night.

Today I had my regular appointment with my team.  The attending was very disappointed that my furuncle had not been lanced, even though I assured him it was getting smaller and the pain was absolutely gone.  "But it's still there!  Ah, I just want to get in and do it myself!" He came out of my nose all excited. "Don't you just love popping these things when they're on your neck or whatever and all that pus comes out!  Oh well."  He added rather hopefully that it may rupture on its own.  We discussed that I had decided to finish out the steroids given recent events, and he agreed, "Well yeah, take the dang steroids."  Then there was a lot of discussion about the future of my Ommaya injections that doesn't bear repeating.  But I will have one more before I leave here.  Oy.

SO that's what's been going on lately.  But I have to say, today was really weird.  Nothing hurt.  No nausea or headaches.  I'm still physically weak, but there was no bone-crushing fatigue.  I had energy to make lunch for Luna which surprised her, and an almost-normal mood.  I laughed with Jo about something.  I verbally guided Brett through an hour-long yoga practice.  I wrote this blog.  Even my doctor said, "Well you look perky."  I can't remember the last time I felt like this, but it was a much-needed glimpse at what getting better looks like.  I honestly haven't seen it since the transplant, I've gotten so used to some kind of pain or total-body-shut-down every day.  I don't know why it happened or if I expect it to last, but I hope I don't forget this feeling again.

Love to everybody.
Edited to add: Today is day +75 post-transplant. Wow.  Don't know if it feels longer or shorter.