Kathy's Transplant Journal

I’ve been hesitant to write this post, because I’ve been hoping I’d have something different to say.  Unfortunately, I don’t.  We’ve got no counts yet to speak of.

The first glorious day there were 15 white blood cells.  Then they went away.  A few days ago there were 50, and we got excited.  Then they went away too.  The doctors keep saying, “The Cavalry is just over the hill” (we’ve moved on to history-based clichés now) and the other day my Mom told them she hoped it wasn’t Custer’s cavalry.  We know what happened to them!

The “average” time for engraftment has passed.  That was T+21 and we are at T+25.  But we have since learned that “haplo” match transplants like ours can take much longer–as many as 12 weeks.  So Dad and I remain hopeful.

Mom is pretty down.  Her feet and legs and abdomen have swollen, right out of her shoes and clothes.  She is in pain, it is difficult to walk and her feet have turned black.  But this, they say, is the least of her problems.  Nothing they can do at this point to help that wouldn’t be dangerous after all the chemo she’s undergone.  She is most often too weak to do more than sit in bed with her eyes closed.  She is unable to eat– NOT because of mucositis (thank God that is gone –and that must be a good sign), but because the Celcept makes her sick. Vomiting and diarrhea are still part of the daily routine.

The work of accepting the transplant occurs around the clock.  Blood is taken often.  The morning’s blood work tells us her counts for the day.  The evening’s blood work tells us if she will need transfusions of red blood cells or platelets that evening.  Each night she receives the Celcept– it takes several hours.  Then the transfusions.  Regular vital signs.  Mountains of other pills, all designed to keep her from rejecting the marrow, from catching an infection when she has no way to fight it.  It is grim, grueling, exhausting work.

If there is no change in her white cell counts in 5 days, she will undergo a bone marrow aspiration to determine whether it’s my marrow that’s struggling to survive or her own.  If it’s my marrow– that’s good.  There are ways they can boost the response.  If it’s her marrow– I can’t even go there.

Dad has moved into an apartment in Hackerman House to be closer to her– the one she was supposed to be released to last Friday.  I haven’t seen her since Mother’s Day.  I caught whatever my son had and it gave me bronchitis.  I have to be a full week symptom free before they will let me in.  It is driving me insane.

I have a lot of faith, and I know we have the prayers and hopes of so many people behind us.  I try to hold onto that, as I grapple daily with being utterly helpless to control what is happening.  Sometimes I give in a little to a cold, creeping fear, but mostly I can hold it at bay.

This prayer might seem a bit out-of-place–maybe too dramatic, but it came to mind as I was driving home the other day–it’s attributed to St. Patrick and was adapted in a book by Madeline L’Engle called A Swiftly Tilting Planet.  It’s Irish, and Mom is Irish, so there’s that.  And for all it’s drama, I think I’m yelling it from that quiet place–where today I am very small, and shaking my fist at an uncaring sky.

Christo-Celtic Prayer
Against the Powers of Darkness
attributed to St. Patrick

In this fateful hour
I call upon All Heaven with its power
the sun with its brightness
the snow with its whiteness
the fire with all the strength it hath
the lightning with its rapid wrath
the winds with their swiftness along their path
the sea with its deepness
the rocks with their steepness
the earth with it starkness
all these I place
With God’s almighty help and grace
between myself and the powers of darkness.

Along with all the other nasty side effects of Mom’s drug cocktail, let’s add another, wild and wooly one to the mix:  extremely vivid and bizarre dreams.  Yesterday she had one in which Sasha Baron Cohen appeared in her room, told her it was time to get out of the hospital, and he loaded her into a van waiting downstairs.  Mom is definitely NOT a fan, and I think it might have been a little disturbing to see Cohen by her bedside, particularly in his latest incarnation as The Dictator:

It is time to leave this place…

Not to mention being bundled off to goodness knows where.

But more disturbing is the limbo she is resting in…with “resting” being a euphemism for suffering. Friday night she found out why mucositis is called mucositis.  We just were told about the excruciatingly painful mouth sores.  And they sort of look “mucosy”.  No one mentioned that the sores will suddenly produce so much mucous that she would wake in the middle of the night with it running out of her nose and mouth– that she would be afraid that she was choking to death– that they would have to vacuum out her mouth, and leave her with the little vacuum attachment in case it happens again.

We ache for some good news.  We’ve been given no bad news…the status is “you are where you are supposed to be.  It will get better”.  But we haven’t heard anything about counts in a while.  I think that’s because she hasn’t engrafted fully yet, and the counts are just bouncing around.  So we worry.

A person we know who went through a transplant two years ago with a fully matched donor was released to IPOP on T+19.  Mom was scheduled to go there this Friday, but I don’t see that happening.  I panicked for a while last night until I could get to a computer, and I read that people who have full-match transplants usually get out of the hospital after 2-4 weeks.  Allogeneic transplants like ours can take 4-6 weeks.

I haven’t been able to personally visit since last Sunday.  My son came down with a fever of 104 last Wednesday– some weird kid virus, but we can’t run the risk.  He’s better now, and if I don’t come down with anything, I’ll see her on Saturday.  Dad has been holding down the fort at the hospital.  This weekend he finally got a recliner for Mom’s room.

That’s been a saga.  When Mom was admitted, all the other rooms were full.  There’s truly an imbalance in the furnishings in each patients room on this ward.  Some have recliners and flatscreen televisions and an Xbox.  Mom’s room is a holdover from another decade– with the 19inch fuzzy tube TV and a “sleep chair”– a hard as a rock monstrosity with no support.  If you’re trapped in a room indefinitely, it shouldn’t be a big deal to have one comfortable chair.  But, daily one of us would speak to the nurse (or in Dad’s case, anyone whose attention he could get in the PACU) and they would say something like, “oh….wow…well, we can look into that,” or “lots of people really prefer the sleep chair!  People are always asking for it.”

Indeed.  Well give it to them.  We are more than happy to trade. To no avail.

The tide finally turned in our favor on Saturday.  Dad was walking with Mom while she was doing her laps.  They noticed that room 16 had TWO recliners.  Once again, they spoke to a nurse.  I need to ask Mom this wonderful nurse’s name, because SHE did not give a vague response.  She went out on an immediate scouting mission and found something better than having a confrontation with the patient in room 16 over inequitable distribution of hospital wealth– she found someone with a recliner was being discharged and she and a tech snagged the recliner out of that room.  Easy, peasy.  Only took 22 days.

I want to give a shout-out to my Father, who has shouldered so much of this on his own; who comes home every night to an empty house, but has remained strong and even cheerful despite the unceasing stress of this situation.  I want to thank my husband Lon, too.  He’s completely rearranged his work schedule to include nights and weekends so he can care for our son until school is out.  He’s doing a terrific job, and even though our boy misses Grammy, he’s having fun with his Dad.

For our wonderful friends and family who say, “let us know if you need anything,” I’m going to let you know we need YOU.  We appreciate phone calls and emails.  We might not dial you up ourselves, we may not be able to take your call– but we’re so overwhelmed by the moment that we can’t do the reaching out–if that makes sense–so please don’t wait for us.  Hearing from you lifts us up.  And if you’d like to make my Dad a casserole, or stop by and play with the boy, or sit with any of us for an hour in the evening, we’d like that too.

I asked Mom what she wanted to convey tonight in the blog and she said to let everyone know that the process she’s going through and the uncertainty are a little like being in hell.  For all of you “don’t say anything negative” folks, I have to say– positive thinking is a force to be reckoned with, but sometimes its OK to be damned mad.  Clarity and Courage folks, are equally powerful tools.

Mom’s sick as a dog, but she’s angry about it, and call me crazy, I see something positive in that (don’t kill me, Mom).

Her current nemesis is the immunosuppressive drug Celcept.  On one hand, it’s keeping her alive and keeping her from rejecting the transplant, so bravo toxic chemical, you go!  On the other hand, every time they administer it she vomits for hours, gets a migraine and her feet have swollen up so badly she can’t wear her slippers and it hurts to walk (which she has to do as much of as possible– they encourage laps around the ward).

She’s really ticked off about her feet, and who can blame her?  The doctors are telling her that they are not concerned, and they won’t give her a diuretic to help, because that would be too harsh on her kidneys (which are already under assault from the Celcept).  In darker moments, this is how she describes what they say:  “Blah, blah blah, can’t do anything about it, hold on for another week, blah blah.”

She’s feeling trapped and the idea of lasting another week before seeing marked improvement is depressing her.  She’s lonely too.

I am so sorry there’s nothing I can do and no one I can beat up on her behalf.  I’m so proud of her.  She’s been in 20 days and though she thinks she’s going to go stark raving mad, she’s done such a good job of it.  And the “blah, blah” folks also mentioned that she is improving.  Her mucositis is getting better, slowly but surely.

“Trust us,” they say, “in a week you’ll see a big difference.”

Did I mention my Mom is an artist? She’d rather be in her studio class right now. Here’s a shot of one of her oil paintings–a favorite of mine.

No shouting.  No High-Fives, barely breathe whatever emotion you feel upon reading my next words.  No congratulations, nothing loud.  More prayers, more wishes, maybe–that’s all this moment will allow for.

Mom’s white cell count was down to zero.  This evening, a nurse practitioner crept softly in the room to let her know…she has 15 white cells.  She practically whispered it.  Downplayed it.  Not a victory celebration.  “We’re looking for 500.  But wanted you to know.”

Could it be working?  It’s a week too soon to say.  So we will say nothing.  Just accept the information.  Here’s that wish, blow the dandelion fuzz, let if drift.  Shout it to God maybe, but only from the depths of the quiet of my soul, so the bad things that happen in the world can’t hear and steal it away.

I will take 15.  Thank You for 15.