T+35: Where there was sorrow at night, but joy came in the morning

Yesterday the doctors came into Mom’s room to report that the transplant didn’t take.  We were devastated.  They said they were awaiting the results of further testing to come up with “Plan B”.  It was the worst day ever.

This morning they came into the room smiling.  Further DNA tests showed that “failure” is too strong a word for what is going on with the transplant.  Mom’s bone marrow is 88% HERS and 12% MINE.  This chimera effect could mean that my 12%  is on its way OUT or on its way IN.

So it remains a waiting game.  The doctors are going to meet on Tuesday to discuss what happens next.  If my marrow is on the way IN, they will probably do a “boost” using my stem cells.

Yesterday I scared everyone to death– because the doctors scared us to death– but maybe we’re nowhere near the end of this.  We’re deep in the middle, and my brave Mom who has already faced 45 days in the hospital is facing many more weeks there.

One thing I know– this fight is NOT over.

Lately (I’m sure because of the stress) I find myself thinking a lot about my childhood.  How safe it was, how happy– I see my Mom in my mind’s eye in her rose garden in Virginia Beach–in every memory it is summer.  I’ve been listening to music from that time too, trying to bring back those feelings.  Today’s selection is from Seals and Croft, because “like Columbus in the olden days, we must gather all our courage, sail our ships out on the open seas and CAST AWAY OUR FEARS.”

We May Never Pass this Way Again (click here if you’d like to hear it)

Life, so they say, is but a game and we let it slip away.
Love, like the Autumn sun, should be dyin’ but it’s only just begun.
Like the twilight in the road up ahead, they don’t see just where we’re goin’.
And all the secrets in the Universe, whisper in our ears
And all the years will come and go, take us up, always up.
We may never pass this way again. We may never pass this way again.
We may never pass this way again.

Dreams, so they say, are for the fools and they let ’em drift away.
Peace, like the silent dove, should be flyin’ but it’s only just begun.
Like Columbus in the olden days, we must gather all our courage.
Sail our ships out on the open sea. Cast away our fears
And all the years will come and go, and take us up, always up.

Posted in Uncategorized | 4 Comments

T+30: Where some things are better, and some things remain the same

After 3 weeks of not being able to go in, I finally got to see Mom today!  Although we are still  nowhere with her counts, I know a few things are better, and for these we are grateful:

  1. The mucositis is almost gone.
  2. They tweaked her medications and changed a few, and this has eliminated the vomiting and diarrhea.
  3. She is starting to eat.  Today she had tomato soup and a cinnamon roll.  Yesterday she had a bagel and cream cheese and a Dove bar.  Day before she managed a hard-boiled egg.  This is after 2 weeks of only liquid.
  4. Her feet are a tiny bit better.  They were never black, it turns out.  She spoke wrong or I misunderstood.  They are big and red and there are blood blisters, but they are not black.  They are giving her a diuretic finally, to get the swelling down.  They discovered in a scan last week that she has fluid in her lungs and around her heart.  This should take care of that eventually.
  5. She has a cute head.  It’s perfectly round and her ears fit it.  When I walked in the room I was so shocked at how much she looked like my grandfather!
Mom’s new summer haircut
Grandpa 1969

For these things we still pray:

  1. Unfortunately, she has a bacterial infection.  I don’t know the name of the germ, but it’s a common one found on our skin, and it made it way into her bloodstream through the tubing.  She had a fever for several days this week, but she hasn’t had one in 48 hours– I’m thinking they are killing it with a new antibiotic.  I’m wondering if her “undetectable” white blood cells have been busy wrangling this bug and that’s why they haven’t come over the hill yet?  They culture her blood daily– let’s hope this thing doesn’t show up in the sample soon.
  2. Monday she is having a bone marrow biopsy.  It’s painful, and they said it’s too dangerous to put her out for it.  They claim they will use conscious sedation.  Hopefully, the person who does it this time is better at it than the person who did it last time.  I’d like for her not to suffer any more.
  3. Monday’s biopsy could tell us who’s marrow it is (hers or mine) or it could be “inconclusive”.  I’m sure we won’t have any results back from that until Wednesday or Thursday.  It’s a BIG DEAL and we are nervous.  (BE ME, BE ME, BE ME!!!!)
Mom and Dad trying on the cool hats I bought her

But while we wait, I hope we the wait continues in relative peace.  The last couple of weeks have been rough.  I’ve been singing a song to my son at night recently, one of my favorites from Andrew Lloyd Webber’s Jesus Christ Superstar, called “Everything’s Alright.”  He calls it the “calm down song”.  In the original, Mary Magdalene sang it to Jesus:

“Try not to get worried, try not to turn on to
Problems that upset you, oh.
Don’t you know
Everything’s alright, yes, everything’s fine.
And we want you to sleep well tonight.
Let the world turn without you tonight.
If we try, we’ll get by, so forget all about us tonight.

Sleep and I shall soothe you, calm you, and anoint you.
Myrrh for your hot forehead, oh.
Then you’ll feel
Everything’s alright, yes, everything’s fine.
And it’s cool, and the ointment’s sweet
For the fire in your head and feet.
Close your eyes, close your eyes
And relax, think of nothing tonight.”

Close your eyes, close your eyes and relax.  Think of nothing tonight.

Posted in June 2012 | 2 Comments

T+25 and we’ve got…nothing.

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.

 

 

Posted in May 2012, Uncategorized | Leave a comment

T+17: Where Sasha Baron Cohen appears with a van, and Dad finally snags a recliner

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.

 

 

 

 

Posted in May 2012, Uncategorized | 1 Comment

The one where Celcept causes her to throw up…a lot

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.

Posted in May 2012, Uncategorized | Leave a comment

Hope is the Thing With Feathers

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.

Hope  – by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune–without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Posted in May 2012, Uncategorized | 4 Comments

Mother’s Day: T+10

It’s T+10 today.  The doctor told my Mom she’s finishing the “first bad third” of this transplant journey, and she’ll soon enter the “second bad third”, which is slightly less bad.  The final third is recovery, but in this situation it’s really best to take things one day at a time.

I’m glad we’ve moved on to math metaphors.  Previously we inhabited a world filled with the kind of clichés that would have driven your freshman English comp professor around the bend:  “This rocket has launched,” “It gets worse before it gets better,” “there’s no going back,” “it’s darkest before dawn,” etc.

A good day: T+7

Monday and Tuesday of this past week were Mom’s final days of Cytoxan.  They were almost as dreadful as the initial rounds, however, they did control the nausea and vomiting in a way they didn’t the first time.  Now that the Cytoxan is done, she’s on a host of medications to help the transplant itself.  Antibiotics, antivirals, antifungals.  She gets transfusions of red blood cells and platelets as needed.  The chemo has almost completely killed her own marrow—her blood counts go down every day.  Sometime between T+14 and T+21, we’re going to see the counts go up…IF THIS WORKED…that will be MY bone marrow doing it’s thing.  I asked a nurse a lot of questions about what to look for—she got concerned and said to me, “I want you to remember, sometimes this doesn’t work, and you are not responsible”.

Of course it will work.  And of course I’m responsible.  OK, rationally, I’m not—the nurse is right; but I think it’s impossible not to feel invested in this.  I guess that’s why anonymous donors are not invited to meet their recipient until a year after the transplant has passed.

We’ve had some good days and some bad days.  One good day my Dad and I spent 4 hours with her and we talked about lots of good times and the day flew by.  We’ve had some bad days where Mom is in so much pain she can’t even move her head from the pillow.  The situation changes from hour to hour.  Dad and I find our moods are influenced by how well she feels.  If she’s good, we’re up, if she’s bad, we’re down.  One thing remains though—the conviction that she’s made the right choice.  In spite of the expected, and extremely difficult physical side effects of this procedure, SHE IS DOING IT.  She made it through the bad chemo—ten times stronger than what they give most cancer patients.  She is free from infection (knock on wood, throw salt, etc).

Each day the staff marks where Mom is in the process and what her counts are

Mom’s biggest challenge right now has the lovely name “mucositis”.  Those are sores that appear in all the mucous membranes (think about that for a second.  Yep.  ALL)  after the kind of chemo she’s had.  They won’t go away until her body can fight them off, so they’re going to be there a while.  They make eating nearly impossible.   They are giving her a strong pain-killer for that.  If it becomes unbearable, they will give her a pain pump.

Mom and Dad on T+7

As for me, I’ve been amazed at how tired I am.  The discharge sheet did say “2-4 weeks” until I felt better, but I’m tough!  They didn’t mean me!  Ha!  I’ve been sleeping 10 hours a night and taking 3 hour naps every afternoon.  And I still hobble around.  I’m heading back to work tomorrow—hopefully they won’t find me curled up under my desk by 9th mod.  And if they do find me, maybe they’ll just slip me a pillow.

Did you know that transplant patients can’t have live flowers?  Actually, they can’t garden for the duration—there are lots of nasty fungus in dirt and mulch.  I made my Mom some tissue paper roses for Mother’s Day and my son drew some pictures.  He chose the subject matter:  “Grandpa with one leg eaten by a crocodile” (yet he’s smiling…Dad says it’s because he still has the other leg) and “Grammy sticking her tongue out” (sort of appropriate).

 

 

Posted in May 2012, Uncategorized | 2 Comments