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.