Lunar eclipse and moon face

Yes, this is the way things operate around here.  Total lunar eclipse tonight and probably the best viewing location in the country is here in Seattle, where I haven't seen a star since I've been here.  Tonight will be no exception;  the clouds are as thick as marmalade.  I'm sorry, I can't think of any other simile at the moment.  The point is, the yin and yang of it all is making my head spin.

So along those lines, as I'm doing all my follow-up tests and such to prepare for a Dec. 29th discharge, while I was still on a high from my clean biospy, I found out that my graft-vs.-host disease (GVHD) has returned and is chronic.  I don't know if I explained it before, but GVHD is when the new cells think your body is a foreign object and attack it.  Commonly in occurs in the skin, GI tract, mouth, liver, lungs, eyes, and/or joints.  I tested positive for it in the skin (the rash I had shortly after transplant).  Initially, we thought it was acute, meaning it was just a one-shot deal, and it went away on its own.  But last week, it came back, with some extra umph, and some GVHD signs are showing up in my mouth too.  Gross!  "Chronic" basically means "persistent," and means I'll need to be treated for it until my new cells become tolerant of my body.  Which is a long time; over the next 9 months at the very least, at the most a couple of years.  If I stop treatment, it will probably just pop up somewhere else and get worse.  The treatment for GVHD is prednisone, a steroid.  I've been lucky to avoid it this long, as it has all sorts of nasty side effects if you take a high dose for a long time, such as bone loss, inability to sleep, muscle wasting, fluid retention, weakened immune system, high cholesterol, and I can't even remember the other ones.  I would guess that most transplant patients are on it at some point.  Luckily, I will be on a very low dose where I shouldn't see most of the side-effects.  That is IF my GVHD stays under control.  I don't know if any of you know anyone with lupus, but GVHD is very similar.  However, it is curable once the new cells get their shiz together.

One side effect of taking prednisone is that you get this big round face.  And I mean BIG and ROUND.  It's very distinctive, and they call it a "moon face."  I can immediately tell in the clinic who is on pred by their face.  I don't know how high the dose is that makes it so extensive, but I'm betting its not that high.   Now seriously, I have no idea how I have any vanity left after the course of this disease.  I lost my hair twice, have a lump on my hairless head where my Ommaya port is, I have all this facial hair from my cyclosporine (luckily, it's mostly blond), my hands and feet are all mottled from I can't even remember what, I have scars all over from biospies, skin punches, and catheters, and my lips peel constantly.  I don't even want to discuss the shape my body is in.  But I am absolutely dreading the prednisone moon face.  It's just like, C'MON!  Anyway, you are all now prepared for the next time you see me.  Oh, and I'll have a nice belly to complement my little stick legs (another side effect).

Yin and yang: having GVHD really lessens your chance of leukemia relapse.  My new cells are working hard, although a little too hard.  Overachieving cells.  It figures.

So, all that considered, my back pain is gone for now and I'm doing pretty well blood-count-wise.  I'm really looking forward to Christmas.  My mom is here, so it will be the four of us, and I've come to like our little apartment so it seems homey to me.  Although I wish Topo was here.  See our tree in the above pic?  It's actually this funny little 2-dimensional fake tree.  I'm not allowed to have live (or recently dead) plants in the house because of the risk of fungal pneumonia.  So this is what we get.  And I like it!

I hope you all are enjoying getting ready for whatever holidays you are celebrating and Happy Solstice!
lots of love,  j

Sigh. of. relief.

As I posted on Facebook, I had my day +84 bone marrow biopsy yesterday.  It's kind of a critical one, because finding any leukemic cells in the first 100 days does not carry with it a very good prognosis.  It basically means the transplant didn't work, and the body can't usually handle another transplant so soon, or even the high-dose chemotherapy you need to treat AML.  A person can still relapse months or even years later, but it is not nearly as critical of a situation (although still not a great prognosis).  Also, if I still had abnormal cells, I would not be released at day +100.  We'd have to stay for who knows how long.

Anyway, I of course have been worried about this biopsy since my last one 54 days ago.  I just got the results of the flow cytometry from the biopsy and they showed no abnormal cells!  There are still 2 other tests to go...a pathology report and the chimerism report (which tells you what percentage of cells are my old ones and how many are donor.  My last one was 100% donor, which is what you want.  Other chimerisms are possible as long as the cells that come back are not leukemic).  I also had a skin biopsy to see if I'm still having GVH of the skin.  It's still a little bumpy in places, so I'm thinking I do.  But I am so relieved I have gotten through the first 100 days without a relapse; and that the transplant worked!  Also, I won't have another bone marrow biopsy until August, unless something happens before that that worries my doctors.  I probably don't have to tell you, it is not a comfortable procedure so that's good news too.

Last week, Brett took Luna to San Diego for a few days, and my mom came up to help Jo take care of me.  Not that there is a lot to do, but I thought it would be nice for Jo to have a break from being responsible for other people for a couple of days, and if anything scary happened, it might be more comfortable to deal with as a team.  Brett and Luna had a great time, despite my missing them to pieces, and I took the opportunity to try to do more things myself (like hooking up my IV and flushing my lines and remembering my pills and whatnot).  It went well, but I still needed help remembering things. Good old chemo brain. And Jo was much more masterful of the IV pump than I was.  But overall I was feeling a lot more confident about taking care of myself when we're back in Sac and Brett goes back to work in January.  But of course, the other-damn-thing rule came into play and my crazy, intense back pain came back on Saturday (I stopped my steroids again last Tuesday).  At least its not the headache, but I can barely walk at times.  So frustrating when I am sleeping again, not nearly as fatigued as I have been, was getting out a little bit (a special Picasso exhibit at the museum, and the mall), and have been in much better spirits all around.  Oh well, I guess it won't last forever.  But if it lasts until the next Ommaya injection, I'll be a little annoyed.  My team said they were going to talk to the neuroncologist about these side-effects since I still need 4 more Ommaya injections and clearly the Depocyt (the chemical used) is extremely toxic to me.  I know, I know...what treatment have I had that isn't extremely toxic.  But there may be other options.

In other news, they cut a few of my pills which is nice.  One of the pills is a really crappy one.  It dissolves super fast and of course tastes terrible, but is hard to swallow quickly because its shaped like a trapezoid.  Seriously, who engineers a pill like that?  A trapezoid?

I also have to mention a book I read recently called "The Emperor of all Maladies: a Biography of Cancer."  It's a fantastic read about the history of cancer occurrence throughout history, about the development of treatments, the biology of cancer, and its role in society (and society's role in cancer research too).  It may sound depressing and there are definitely sad parts, but on the whole, its hopeful.  Which is nice.  I suppose it would be pretty jerky to put out a book about how hopeless cancer is.  The author is an oncologist and researcher and a great, readable writer.  I couldn't put the dang thing down.  It's a brand-new book still only in hardcover, but you can get it on Kindle for a reasonable price.

Anyway, with the biopsy out of the way, I can start all my discharge testing this week and next.  So we can get a closer look at the physical mess I've become and can plan my maintenance care for my doctor in Sac.  I just need to say infection-free now.  Jo left today to prepare for student teaching back in Carson City.  I can't get over what a gift my sister has been for us over the past few years.  I miss her already, and I know Luna does too, but I'm excited she's getting her career started.  So Luna will come to clinic with us for a few days, which delights everyone at the clinic.  Then my mom comes to help with Luna for a little while.  So that's the plan-ish.

Ok, I have to add this in.  Just about 2 minutes ago, my medical supply delivery people knocked on the front door and Brett went to the door saying, "Come on, Luna!  Let's see who's at the door!"  Well, Luna started crying and climbed into my lap in a panic, hiding her face. After she composed herself, she said, "I don't want to go see Santa!  He's scary!"  She thought Santa was at the door!  I completely get it...I have never a big fan of the Santa story as it is so full of holes.  And since we don't have a chimney, what am I supposed to say?  He comes in through the window?  He picks a lock and comes in the door?  Both sound creepy.  So I never talk about him.  I'll let Brett handle Santa this year.

Hope you all are getting ready for the holidays without fear.
love to you, j

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.