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.

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?

Why I will never be a good writer

I'm all bloggity bloggity until I'm feeling down and/or depressed. Then I climb under the covers and hide. When isn't that the heart of all writing? Pain? Anguish?  Torment? Well, its not something I like to share but I may never write again if I have to say, "Everything is getting better and let me tell you about the hilarity of hospital pajamas."  I'm starting to hermit out which Brett says is not healthy so here I am.  Since getting home from the hospital, I have felt the worst I've ever felt.  The level of fatigue I feel is one I in no way knew existed.  I would spend all day in bed if I could, but I have to go to the clinic where I fall asleep in assorted chairs.  At home, I can be awake for about 3 hours before heading back to bed.  Even Luna knows I can only read her books; I'm pretty useless as a mom besides that.  The exhaustion makes me emotional...I mean sobbing and heaving like a five-year-old with snot everywhere about- get this- something different EVERY DAY. I cry in almost every doctor appointment I have.  I told them I was pretty sure I needed psychiatric examination, but there is a 2 month wait and "Believe it or not, this is very, very normal." says my nurse, who has been doing this for 30 years.  I want to scream, "Are you kidding me?  And this is the best you can do?  Aren't there pills for this?  I'm taking 40 pills a day with horrible side effects and you haven't managed one that will make me a little happy?"

I'd be lying if I didn't say some things haven't improved.  The rash I had in the hospital turned out to be Graft-vs.-host disease of the skin, but it seems to be resolving itself, strangely.  I am fully expecting GVHD of the gut next, and I'm scared.  I have have been crackling and peeling everywhere from the radiation burn, and that is on the decline, so I look a little less monstrous.  Also the rash is off my face.  I'm serious, I didn't look in a mirror for almost a week, I looked like the CryptKeeper.  One of my meds makes my blood pressure sky high, so now I"m on another med to lower it.  But I may be dropping another one of my meds next week which would be 6 fewer pills a day.  My counts are sky high: WBC is 5.2 and ANC is 3500.  I get shots in my stomach every day to help these numbers come up, but tomorrow is my last one.  This is good, because now the marrow can have more resources to make platelets and red blood cells.  It's currently not making any, so I have transfusions of these every other day.  Which means Benadryl every other day to prevent reactions, which means more fatigue.  Ah, well.  I had a 30 day post transplant bone marrow biopsy and they found no leukemia, and I am 100% donor cells.  My derelict cells are all gone.   These baby cells have a lot to learn.  For example, they don't like Pad Thai.  But generally I can eat without too much nausea which puts me ahead of a lot of people.  I've seen a couple of people that got released about the same time as I did and it's clear they are having good days and bad days too.

Intellectually, I know I'm lucky to be alive this long, and possibly cured forever, but it is so hard to see the end of this.  I feel like I will never feel "normal-ish" again.  So sorry to be such a wanker this post but I didn't want to lie and I had received so many wonderful gifts and messages and I couldn't just ignore everyone forever.  I miss you all too, I suppose that's part of it.

We took Luna to a pumpkin patch the other day and she chose a very small, clean pumpkin to carve and made friends with a chicken.  It was almost a normal day, except that I threw up 4 times for no apparent reason.  I also managed to help Brett take her to the park the other day.  My physical therapist has a whole regimen for me and I can tell Brett is excited to be my coach.  I see a lot more tears coming.  We have lots of plans for Halloween, I hope I can do them.  Pictures to follow, regardless.  So I'm sorry for the long silence, then feeling sorry for myself.  I hope you all are doing well and enjoying the fall.

Sweet freedom!

On Saturday night, after 32 days in the hospital, Jessie was discharged.  I would have written about it that night, but Jessie had a low fever and I was worried that we were going to be back in by Sunday morning.  By the time Jessie had her first clinic appointment on Sunday afternoon, the fever was gone.  

By the numbers:  Jessie was discharged on Day 24 since her transplant.  Her neutrophils were 440 (the docs normally prefer to wait until they are 500, but they have been heading in the right direction so they were comfortable sending her out).  Today her neutrophils were up to 820.  34 is the number of pills that Jessie has to take every day, although if you include the “as needed” pills it’s probably closer to 40.  She only has to get one shot a day.  1500 mL is the amount of intravenous fluids filled with potassium and magnesium she is getting per day.  6 is the number of hours Jessie gets to carry around the small backpack that carries her intravenous fluids.  

Life on the outside… before we get to this it is good to remind ourselves that a month ago they gave Jessie enough chemotherapy and radiation to kill her entire immune system.  I often have to remind Jessie of this too.  The reason I bring it up is that I don’t want to give anyone the impression that Jessie was doing cartwheels on the way home.  She is very tired and fatigued.  This is the norm and will likely be the norm for several months.  There will be good days and bad days along the way and this is to be expected.  I can’t say for sure, but I think the fatigue is the hardest thing for her right now.  She still has the rash and still a bit of nausea, but otherwise is doing ok.  Oh, I forgot, she has rhino virus, better known as the common cold.  It’s not threatening, but when you barely have an immune system to begin with, coupled with the fact that you are loaded up on immunosuppressant pills, it means it isn’t going away any time soon. 

For the next few weeks Jessie’s days will consist of a daily trip to the clinic for a blood draw with a smattering of transfusions and other appointments here and there.  For example, tomorrow she has a blood draw at 10:30, an appointment with the nutrionist at 11, and I’m going to bet that by the time that appointment  is done she will get a call that her blood work shows she needs a platelet transfusion.   And when Jessie isn’t at the clinic, I will be forcing pills on her and/or hooking or unhooking her up to her backpack full of intravenous goodies.

Day 20. That's right, 2-0

I seriously thought someone had mischievously manipulated my dry-erase board when I saw Day 18 up there a couple of days ago.  I can't believe how much time has gone by and how little of it I remember.  How is it that I don't even totally remember writing the one blog I have written since transplant?  The possibilities for personal humiliation are just about endless, so I'm not asking too many questions about my lost weeks.  Brett's blogs tell me all I really need to remember as far as I'm concerned.  But I feel like I just woke up.

My new found sentience came with the realization that, "Wait a minute, I've been in this room for. 26. days."  And I would like very much to go home now.  Suddenly, the days are very long.

I am waiting mainly for my neutrophil count (ANC) to get to 500 for a few days, then I can be discharged.  Currently, they continue to bounce around between 100 and 200, which they are wont to do.  You may remember from previous posts that I am always waiting on these things.  Generally, I think the numbers are trending up s l ow l y.  I have to admit that I thought the clinical trial I'm on would give me a superhuman recovery time, and although this feels incredibly long, actually I'm on track for a normal cord blood transplant recovery and ahead of the curve in many aspects.  The 3rd expanded cord seems to have made recovery smoother, if not shorter.  Particularly, the mucousitis was not so bad, no mouth sores and only throat pain.  I was only on IV nutrition for a day or 2, while most patients are on it for weeks.  Other side effects weren't too bad either.  Of course, I don't remember them, so that helps. There are just a couple of things.

One thing that persists is a rash that no one is hugely worried about but is uncomfortable and unsightly to me.  It's on my feet, hands, arms and around my eyes, of all things.  It is probably a drug reaction, and we have not really tried to treat it yet since the drs. are still goofing around with my drugs.  How many, you say?  I have LOTS!!  Anyway, it flairs at night and itches.

The other thing going on that I'd like to whine about is the burning sensation on the palms of my hands and soles of my feet.  Another drug reaction, I'm told, but annoying nonetheless.  I have also lost my hair again and gained about 50 new freckles on my shoulders from the TBI.  I haven't lost too much weight, so my dietitians are happy (they come by every day it seems). So that's my current state of affairs.  Oh wait!  I also can't taste sweet.  It took me 4 sugars in my coffee one morning to realize this.  Anything (formerly) sweet tastes like cardboard.  I'm just avoiding sweet things for time being, which I guess is not a bad thing.  This should be temporary, but still it's weird.

I really have no huge complaints.  The ICU for transplants is on this floor and it's a horrible reminder of all the things that could be going on for me.  So.

My lovely friend Jenny sent me some knitting supplies and a book so I'm trying to teach myself that.  I think it has reduced my hand tremors (another drug effect) a bit and it's good to focus on something when my short-term memory is so shot.  Jo brings Luna to visit just about every other day so that is AWESOME.  I've been watching a lot of Pawn Stars on the History Channel which I consider an educational show and also perfect for someone with no memory since they replay a lot of episodes and hey, they're all new to me!  I don't expect I'll have a lot more to report until I find out I get to go home. 

Hope everyone is doing well.  Thanks again for all the thoughts and prayers and messages.  Much love to you all.

Day 18: Quick Technical Update

So last week they did a second “chimerism” test on Jessie to see which cells, from which umbilical cord, were doing what.  The last test on Day 7 revealed that all Jessie’s white blood cells and neutrophils were from the expanded cord unit.  The most recent test showed that all the cells from the expanded cord unit had “dropped off.”  That means that all Jessie’s white cells are now from the unmanipulated cord units which will provide her permanent marrow and immune system.  For the past two days her neutrophils have been 120.  Two days ago they were 30, so the trend is upward and that is what the doctors like to see.  The goal is 500 for three days and no fevers and then Jessie can be released from the hospital.

Jessie is generally feeling better than the last time I wrote.  Mainly, she is achy and has an itchy rash on her arms and feet combined with a burning sensation.  As I mentioned in the last post, the achiness is probably from a drug to boost her white blood cells, the burning in the hands in feet could be from an immune suppressant drug, and the rash possibly from an antibiotic.  Most of these should go away soon.  Anyway, if all continues to go well we should be able to go home soon.  Good news and we hope it continues to go that way. 

So you have a rash, nausea, diarrhea, heart burn, insomnia, fatigue and your whole body hurts. You’re doing great!

That title pretty much sums up what the doctors told us this morning.  And, in the big picture, it is true.  While Jessie is miserable with all those symptoms, things are progressing fairly well.  Since she hasn’t had a fever in several days, they took her off the steroids and there has been no sign of an infection based on the cultures they have done.  Mucositis is gone for the most part and Jessie has been removed from intravenous nutrition now that she can swallow again.  Eating is pretty challenging with all her other symptoms, but she is working at it and is making a bit progress each day.  Jessie has also been able to go on a walk each day since her fever went away.  Her achy body is likely due to nuepogen, which is a daily shot she receives to boost the neutrophils produced in her body.  The rash which covers her hands, arms, and feet is a possible side effect from a prophylactic antibiotic and they will continue to monitor it and treat it if necessary.  Her blood counts have been pretty stable but still low.  That’s pretty much it.  Despite how Jessie is feeling, this is all pretty good news on Day 15.  Let’s  hope for more good news coming our way. 

Old skool

Blogger Quinn is back, with a couple caveats.  1.  I can't really type, and I'm only half trying to rectify that.  Idon't know if its chemo/radiation brain coming back, or the 7 or 8 pills I'm on twice a day.  2.  I have little uplifting to say.  and 3.  Why does there have to be three?  Oh did I mention no fevers for today?

Brett has been doing such great with the blog, I tempted to let him run with it a little while longer, but the aforementioned steroids have got me going a little buzzed at the the moment.  and unable to type.So back in the engraftment cyndrome days "Yea, hey little cells!  I see that you are there!  Good job."  Here are the specifics on who is doing what inside my blood cells:

Day 7 chimerisms (mixures of cell lines):

CD33 (neutrophils)    100% expanded cell source

CD14 (monocytes)      100% expanded cell source

CD56 (“NK” cells)       11% expanded cell, 79% donorA, 0% other donorB, 10% host (jessie and OK at this point)

CD3 (T cells)               0% expanded cell (expected, as they were taken out before transplant), 43% donorA, 34% donorB, 23% host

CD19 (B cells)              too few to count

My cell researcher is banking on the donorA cells winning out.  What I think is sad is my own NK cells and T cells going WTF?  anyway, although i'm feeling better, i'm not even 90%, so I think I need to work on that with some decent sleep now.  Thanks all you've all done for us...and reading the blog helps us too.  Love you too too much.

Day 9 – Engraftment syndrome

Hi, Brett again.  Do you remember those pesky fevers that I wrote about yesterday?  Well, they are still hanging around.  Jessie was flirting with 104 for the entire morning.  She took some Tylenol around 11 a.m. as a premedication for a blood transfusion and by 12:45 she was down to 102.  She also has a bit of rash which is hard to see with the untrained eye over most of her body.  The docs here keep testing and testing to make sure Jessie doesn’t have an infection that could be causing the fever.  They also changed antibiotics in case she was having an allergic reaction.  The third possibility is called engraftment syndrome.  What is engraftment syndrome?  I don’t know.  But, I can relay the limited information that the docs have described to me.  Engraftment syndrome is unique to cord blood transplants and for some reason the new cells cause a fever and a mild rash.  That’s all I have.  Sorry.  I’ll ask the docs more questions next time I see them and try to update this.  Engraftment syndrome is temporary and does not affect the transplant.  It can be treated with steroids and is typically under control within a few days.  But, when you have no immune system, they do not take the possibility of an infection lightly, and they delay treatment until they are as sure as sure can be that there is no hidden infection.  We are almost to the point where they will treat it, but they need one last chest xray to rule out infection.  So, until they find an infection or decide to treat her with steroids Jessie will be feverish and uncomfortable.  Sucky, but that is what’s happening…  As far as her blood counts, the white blood cells are the same as yesterday and neutrophils went down to 90.  I hope to bring you some better news soon. 

UPDATE : Jessie got her first dose of steroids tonight (Friday) so she should be feeling better soon.   I asked the doc more about engraftment syndrome and he said the "new cells are announcing her body that they are here."  Now that's medicine!  I'm sure the Jessie's research doc will give me a better answer and maybe I can try to explain it then.