T+175: Some Bumps in the Road–a Message from Kathy

Hi Everybody,

Some of you may know that I have had a rough few weeks, a lot of good
days but more increasingly bad days.  It involved a lot of eating,
tasting and GI issues, without going into all the gory details.  This
past Monday I broke out all over with a serious case of hives, itching
and painful hives.  I went to Hopkins on Tuesday and they took a skin
biopsy and gave me a prescription ointment and a pill supposed to be
stronger than Benadryl.  Nothing helped.  Thursday I started puking.
During one puking session I fainted and fell to the floor like a rock.
I managed to bruise both knees and break the middle toe on my left
foot.  Larry heard the noise, asking where are you?  I weakly replied,
on the floor in the kitchen.  After much panic setting in, I was
finally able to let Larry help me to the couch.  I now hobble around
the house with a taped up couple of toes and one crutch.

To make a very long, chaotic story short, we went back to Hopkins today
(Friday) where they checked over.  The skin biopsy showed that I was
having an allergic reaction to “something”, most likely an antibiotic I
had been taking for six months.  This was causing a lot of problems.
They said a person can develop an allergy to something at any time,
even after long-term use.  They took me off of that pill and changed
the antibiotic.  Also, they determined I have chronic Graft vs. Host
disease.  A little of that is a good thing, believe it or not, because
it shows that my new immune system (which came from Kellie’s marrow) is
fighting foreign invaders (my old marrow).   I am 70 percent Kellie and
30 percent me, which means it’s not 100 percent Kellie yet.  And if it
never gets to 100 percent Kellie, that’s okay as long as my counts
remain stable.  I can live with that scenario, according to my doctor.
But GVHD can cause a laundry list of physical annoyances.  They just
don’t want it to become severe.  So there is a fine line to keeping it
under control and not giving me too much medicine so my immune system
is further weakened.

The main line treatment is low-dose steroids, in my case Prednisone,
for as limited time as possible.  In my case, maybe three months.
There are a lot of other nuances to this which I won’t go into, but we
are praying that this change in meds will do the trick.  Like I’ve said
before, it’s a marathon, not a sprint.    Thank you all for your
prayers and support.  I AM hanging in there, even if sometimes it’s
only by my fingernails.  I hate to feel sick (who does?) but I am
particularly grumpy when it happens to me.  Larry is a saint.
Sometimes he can only watch what’s happening, not being able to do
anything about it.  I, on the other hand, start yelling that I want
this situation fixed and I want it fixed NOW!   I have quite a bit of
my father in me, the spit and polish military man — and the extreme
stubborn attitude of my mother.  It has served me well through all of
this.  And Kellie says, Mom, you’ve got my good marrow now, and it’s
STRONG.  And prayers have certainly served me well too.  I’ll be in
touch again soon.

Love to all,
Kathy

 

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Day T+96: Just Sitting Here Watching the Wheels Go Round and Round

I’ve heard from a lot of people lately asking for an update on Mom, and I apologize for letting some time go by.  Let me assure everyone, it’s all good.

Since day T+66 we’ve all been learning to wake up and not feel that clutch of fear around our heart, and we’ve shed the dark cloud we’ve been living under.  For my part, I have headed to the beach, the pool, the playground and any point of blessed normalcy I can get too.  Mom has been home, regaining her strength, and she’s happy to be there.

She had a brief weekend in the hospital  last week after experiencing severe abdominal pain.  Doctors concluded that her digestive system is still really weakened from the chemo, and it might have been as simple as having fresh corn on the cob.  She was unhappy to be there, but it was, in the scheme of things, pretty quick.  While in the hospital they did a scan of her heart, because it has some fluid around it.  Yesterday at her monthly appointment with Dr. Smith, he said the scan looked good: function is right on, and the fluid pocket is small (and a result of the chemo).  Her counts are amazing.  She has over 7000 white cells, she’s making platelets on her own, her neutrophils are in the normal range– she only sometimes needs red blood cells (those are the last things the new marrow will manufacture).  She’s been weaned down to checking in at Hopkins every 8 days.  Yesterday Dr. Smith told her it was OK to eat a restaurant– in off hours– I think she’ll try that soon.

Saturday she resumed her old job as Michael’s barber.  He got one haircut with Daddy early in the summer, but since then he’s been saving his head for Grammy.  When he left he said, “It’s really great to have you back Grammy!”

So, our music of the moment?  Some John Lennon, because I for one have experienced a real and personal transformation.  I’ve seen a bigger picture this year and I’m no longer going to be stressed by the silly little things we let ourselves get caught up in–in any part of my life.  So there.

“People say I’m Crazy doing what I’m doing
Well they give me all kinds of warnings to save me from ruin
When I say that I’m o.k. they look at me kind of strange
Surely you’re not happy now you no longer play the game

People say I’m lazy dreaming my life away
Well they give me all kinds of advice designed to enlighten me
When I tell them that I’m doing fine watching shadows on the wall
Don’t you miss the big time boy you’re no longer on the ball?

I’m just sitting here watching the wheels go round and round
I really love to watch them roll
No longer riding on the merry-go-round
I just had to let it go

People asking questions lost in confusion
Well I tell them there’s no problem, only solutions
Well they shake their heads and look at me as if I’ve lost my mind
I tell them there’s no hurry…
I’m just sitting here doing time

I’m just sitting here watching the wheels go round and round
I really love to watch them roll
No longer riding on the merry-go-round
I just had to let it go”

http://youtu.be/ceckNNKjcR8

 

Posted in August 2012 | Leave a comment

T+66: Rejoice Evermore!

One year ago Mom, Dad and I sat down in Dr. Smith’s office and heard the most frightening news any family can hear.  The world was suddenly a grim and unfamiliar place and we began to live in a state of constant stress, even as Mom began her fight against CMML.

Today is 66 days past the bone marrow transplant, and once more Mom was in Dr. Smith’s office…but his demeanor was much different than last year.  Today, he was very, very happy.    The latest bone marrow biopsy shows that my marrow now makes up 75% of Mom’s marrow.

I am so proud of my bone marrow–I thought it had what it takes!

Mom is doing really well.  She was released from IPOP and has been home for a week.  She still has to go to Hopkins twice a week to be checked.   Her white cells are bouncing around in the 2000-3000 something range, her neutrophils are in the NORMAL range! and she hasn’t needed a transfusion of platelets in a week.  She is starting to eat well, she is resting, and she is doing what Dr. Smith has charged her with now– getting her strength back.   She still needs to be very careful of infection.  She has to avoid crowds– but he gave her permission to eat what she wants– that’s huge, right?  Especially for someone who existed on Ensure and tomato soup for 2 months.  My son is a little nervous around her– he misses her hair and her smile (she has had to wear the mask around him) and he’s asked me when “the old Grammy is coming back”.  She’s here!  We tell him– but he’s skeptical.  I think he’ll see a greater change in the next month or so.  And someday, maybe he’ll read these entries and he’ll understand everything he’s been through.

As Dr. Smith put it today, Mom has gotten over the 1st big hurdle.  She is cancer free, and she is accepting my marrow.  As time goes on she still has to be wary of graft v. host disease, and of infection.  But he started a sentence with “In 10 years…” and I have no idea how that ends because my mind is frozen on how much better that sounds than, “would you like to make it to Christmas 2012?”

We have been given such a gift.  I can scarcely wrap my mind and heart around it.  I am thankful for the brilliant doctors at Hopkins.  I am grateful for my Dad’s perfect care of my Mom; for my Mom’s incredible strength of will through the darkest days of this process’; my husband’s unwavering care of me as I navigated the mental and physical challenges of this crazy time.  I am sending out my love and thanks to all our friends and family for their amazing support. How many hundreds of prayers have been said for our family?

On this road, we never traveled alone.

I am not sure how to come down off the constant vigilance.  I think it will take a while to relax, to stop waiting for the next bad thing– but I think that is normal.   In the meantime, it’s an Alfred Tennyson type of night– and maybe in whatever personal journey you are taking, these words will inspire you as they always have me and my Mom:

From “Ulysses”, which first appeared in Morte D’Arthur, and Other Idyls

“Come, my friends,
‘Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew

Tho’ much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

 

 

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T+49: Week 1 of Outpatient and the Counts Keep Rising!

Mom’s white counts yesterday were 2,660!  The normal white count range begins at 4000–the counts are nearly doubling every day at this point.  They can slow, and they can go down, but at the moment, things with that are good.

This week was not without its challenges.  Mom made it 2 days in outpatient before a transfusion of platelets caused an allergic reaction (her throat closed up).  She ended up back in the hospital for observation for 2 nights, so they could clear that up.  While she was in they did a biopsy of the rash on her leg to confirm that it was graft v. host (and it IS).  They changed around some of the 40-some medications she takes to include a steroid.  She also got a visit from Dr. Smith, her doctor who was in charge of her care before the transplant (and will be again after she’s released from IPOP).  He said he’d been traveling and had gotten an email from her “number one patient advocate, Kellie” during the week things looked grim, and he wanted to come by and check on her. The day the other doctors said the transplant “failed” but were vague on other information, I emailed Dr. Smith for clarification, because he has always been very straightforward about this process and open to communication.  He was nice enough to have emailed me back right away.  Both he and Susan (the transplant coordinator) have been terrific in this process.

The swelling in her legs went down– she lost 14 lbs of fluid– and then it came back.  She’s now up 20lbs from her real weight and is having the shoe/pants problem again.  This one’s going to just take time.

She sounds GREAT.  Last night we had the longest phone conversation we have had since before the transplant and it was like “before” this all started.  Her improvement is for many reasons– clinical, due to the white count going up, but more than that psychological, because she’s with my Dad all the time.  He’s taking perfect care of her with the utmost patience.  He’s cooking for her and she’s starting to eat more normally.  He knows what she needs without her having to explain it.  He’s “there” with her, and that’s so much better than being in a hospital room.  Little M. says Grandpa deserves a big gold star.

Mom wanted to type an update herself (and hopefully will this weekend) but her keyboard malfunctioned and she can’t get it to work.  She received the most wonderful gift from her friends in the Open Studio class she’s taken for so many years.  The ladies created a banner that had all their pictures on it and a picture of the paintings they are working on so she could see the class though she isn’t there this semester.  It made her week–we all thank you and Mom will be writing soon.  She finally feels well enough to answer all the emails and to blog and technology has failed us!  We’ll get it together.

My son and I have our best conversations right before he goes to sleep at night.  He’s been very stoic about this situation, but I think he’s reached the point of being “done” now.  Each night this week he talked about how much he misses Grammy and Grandpa.  He said, “I miss how Grandpa picks me up and lets me push the button (to the garage door opener), I miss Grammy playing cars with me, I miss eating at their house, I miss everything!”  One of the hardest things I’ve found to deal with is the grief my child feels.  With a child’s feeling that time lasts much longer than adults perceive it, he probably thinks I’m the empty promise lady– I keep telling him they will be home “soon”.  My Dad came home one afternoon this week to play with him– M tried to squeeze in every game they ever played into 4 hours!  Now that I’m finally finished with work until August, I’m going to trade-off with Dad so he can come visit M. more.

This week I’ve been feeling that the world is very beautiful.  I feel content with things and that is unlike me.  The year before my Mom was diagnosed I was feeling very restless.  I was dissatisfied with the state we lived in and Lon and I were ready to pack up and go.  I moved a lot during my childhood and early adulthood– I think wandering is in my blood.  I’ve seen so many places and met so many people that being in one place this long– 12 years–seemed stagnant.  With the diagnosis, I put all that aside by necessity, and as this part of the process is ending, I’m finding I’m feeling grateful and content with what I have.  That could change in the future– but what won’t change is the way I think about life.  This experience has been so big–it makes petty things that used to overwhelm seem small.  I guess I’ve been given the gift of perspective.

I think though, that I’m going to have post-traumatic stress disorder.  I made a joke about it to my Mom, but apparently it’s a real thing and they’ve already mentioned it at the hospital.  We’ve lived this entire last year in such a heightened state of fear and anxiety.  It’s hard to come down from it and relax our guard.  And since we’re still not nearly done, I expect we’ll be grappling with all the feelings the continuing treatment and blood tests provoke.  The goal is to begin to enjoy everything again, and to find a box to put the anxiety in.

The feeling that “right now” is something I am so grateful for has translated into a new song for my son’s bedtime:  The Way You Look Tonight:

Some day, when I’m awfully low,
When the world is cold,
I will feel a glow just thinking of you
And the way you look tonight.

You’re lovely, with your smile so warm
And your cheeks so soft,
There is nothing for me but to love you,
And the way you look tonight.

With each word your tenderness grows,
Tearing my fear apart…
And that laugh that wrinkles your nose,
It touches my foolish heart.

Lovely … never, ever change.
Keep that breathless charm.
Won’t you please arrange it’
’cause I love you … just the way you look tonight.

With each word your tenderness grows,
Tearing my fear apart…
And that laugh that wrinkles your nose,
It touches my foolish heart.

Lovely … never, ever change.
Keep that breathless charm.
Won’t you please arrange it’
’cause I love you … just the way you look tonight.

 

 

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T+43: Released! to the Hackerman-Palz Family Pavillion

51 LONG days after entering Johns Hopkins, my Mom has been released to IPOP (outpatient care).  For at least the next two weeks she has to be at the IPOP clinic daily, so they are staying at the Hackerman house, rather than take the hour drive into the city.

The front of the Hackerman building.  The apartment has a small living room and a small bedroom, and a kitchenette with a microwave.  The common area has a fully stocked kitchen, computer, a library etc.  There is a bridge connecting the apartments to the Weinberg building, so it’s a convenient trip over.

 

This afternoon, Mom’s white count was 360!  The graft vs host rash continues to spread.  We are hoping that clears up soon, but there is varying information about how long it will take.  Here’s what that looks like on her arm–but it’s everywhere:

Graft vs. host rash on Mom’s arm

This is not your average rash.  Still we’re grateful to see it, but it will be nice if it goes away in a reasonable amount of time.  It isn’t pretty and it itches.

Dad learned to flush out a Hickman catheter yesterday and to clean and change the dressing on it.  I am very impressed.  I have to learn to do it too.  Since Mom’s swelling in her feet and legs are back up, they’ve given her more lasex– again, we’re hoping for a quick resolution to that problem.  I am heading out to find some kind of comfortable shoe for her to wear.

We received a booklet on patient care for the first year following transplant.  You would be amazed at the restrictions that are necessary to keep her healthy.  She has to avoid crowds, and children (because kids can be sick and not look sick.  Not sure how we will handle that one for obvious reasons).  She can’t eat salad, or from a buffet.  She can never go out in the sun again without the total protection of sunscreen and shade (the sun can aggravate graft v. host).  No gardening, no touching soil, dirt or mulch (fungus grows in these).  She has to avoid cats and turtles.  On the plus side, she can’t do housework!  She’s not allowed to touch solvents or cleaners.  All of her immunities from disease were killed by the chemo, so none of her childhood immunizations work.  I’m not sure why MY immunizations don’t help her, but at the one year mark, she’ll have to be re-immunized.  Until then, she has to avoid people who have received “live vaccines” (oral polio, smallpox or chicken pox) for 30 days.

This is just the tip of the iceberg– but like everything else, we can only take it one day at a time.

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T+41: The One Where a Rash Has Me Jumping for Joy!

It worked.  IT WORKED!!! This morning there were 160 white cells, over 100 neutrophils and my Mom broke out in a red, itchy rash all over her body.  YES!!!  She has Graft vs Host!  It WORKED!!!   My marrow is in there and it is doing its thing and the appearance of GVHD confirms this.  This morning the Doctors said, “Congratulations!  You have some brand new white blood cells!”

In one week we’ve gone from catastrophe to amazing.

Mom still has a long road to travel.  GVHD will always be with her, but hopefully, in time, it will be mild.  She’s trading a deadly disease for a chronic disease.  Bone Marrow Transplant teams don’t say “cure” for quite a while.  We have to hit the one year mark before it’s significant.  Even after, she will continue to be monitored.

This morning Mom was excited….this afternoon she was pensive and afraid to believe.  Dad and I and Lon are very excited, but I can sympathize with her position.  We’ve been under such stress for the last year (since her diagnosis), it’s impossible to suddenly not feel that stress.  This victory feels very fragile.

In addition, just because the transplant has engrafted, she is nowhere near “well”.  Physically, she is extremely tired and she isn’t eating much.  Though she’s lost 14 pounds of fluid, her feet are still too swollen for shoes, and the skin is peeling off them.  She is still dealing with nausea and vomiting, but much less than before.  The chemo has done some damage to her bladder–I’ve looked it up and it’s called hemorrhagic cystitis (but her situation with it is mild).  You can look it up if you want to.  Her blood pressure is a little wacky– something she never had a problem with before.  That’s also from the chemo.  She is doing her laps, but lacks the energy to do much else– the concentration to read (though she wants to) or watch TV or even to talk much.  I think her body is going about the hard work of recovery and there is not one extraneous thing it can do.

She will be staying in her room until they get things under control.  But if there was NO other issue, they’d be putting her into outpatient care.  Right now!  It’s a little shocking.  She will have to report to IPOP daily for many weeks, and since she is so weak, she will soon be moving into the Hackerman House with my Dad.  He will be her night nurse (with relief from me and anyone else who might be able to help) and by day he will wheel her across the bridge to the treatment center, where she’ll continue to receive various drugs to keep this thing rolling.

It’s not over yet.  Nowhere near.

By now you know how my mind works– linking everything to the poetry and music that have always been my love.  What song came today?  Two– so totally different, I had to share both– jubilation and reverence in equal measure.

First, Jubilation:  “The Road to Shambala” by Three Dog Night (still reliving that 70s childhood).

Wash away my troubles, wash away my pain
With the rain in Shambala
Wash away my sorrow, wash away my shame
With the rain in Shambala

(chorus)
Ah, ooh, yeah, yeah, yeah, yeah, yeah, yeah
Ah, ooh, yeah, yeah, yeah, yeah, yeah, yeah

Everyone is helpful, everyone is kind
On the road to Shambala
Everyone is lucky, everyone is so kind
On the road to Shambala

(repeat chorus)

How does your light shine, in the halls of Shambala?

How does your light shine, in the halls of Shambala?

Lastly, Reverence:  a quiet one from an entirely different century, the Tallis’ Cannon, written during the reign of Elizabeth I:

Glory to Thee My God This Night

Glory to thee, my God, this night,
for all the blessings of the light:
keep me, O keep me, King of kings,
beneath thine own almighty wings.

Forgive me, Lord, for thy dear Son,
the ill that I this day have done;
that with the world, myself, and thee,
I, ere I sleep, at peace may be.

O may my soul on thee repose,
and with sweet sleep mine eyelids close;
sleep that shall me more vigorous make
to serve my God when I awake.

Praise God, from whom all blessings flow;
praise him, all creatures here below;
praise him above, ye heavenly host:
praise Father, Son, and Holy Ghost.

Posted in June 2012 | Tagged , , | 3 Comments

T+36: “Faith is the substance of things hoped for, the evidence of things not seen”

Today there are 71 white blood cells!

And at the advice of the staff, a little boy got to see his Grammy.

Some medicines don’t come in IV bags

We wait, we give thanks, we continue to cry out the desires of our heart.

Posted in June 2012 | Tagged | 2 Comments