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.