Snow

The view from our Salt Lake City apartment

It's hard to believe the first day of winter is still three weeks away.  Roger does not feel ill, but his energy is low.  His blood counts are on the decline and the new stem cells haven't kicked in yet.  They will probably start giving him transfusions soon to perk him up a bit until he can start producing his own blood cells.

It may be late fall, but it feels like winter in every sense of the word.  This is a time to stay huddled inside, listen to music and wait it out.

Snowbird  (click song title to play)

Beneath it's snowy mantle cold and clean,
The unborn grass lies waiting for its coat to turn to green.
The snowbird sings the song he always sings,
And speaks to me of flowers that will bloom again in spring. 

Anne Murray

How to Have a Bone Marrow Transplant in Ten Easy Steps

While Roger goes through the regimen, Candi blogs

Here’s an explanation of the bone marrow transplant procedure for the uninitiated. Don’t try this at home.

1. Begin with a preparative regimen of chemo treatments to destroy the leukemia cells in your body and make room in your bone marrow for new, healthy stem cells. It will cause your hair to fall out, but that’s okay because you won’t be going out anyway.  
2. You may rest a day or two before the day of transplant. ‘Rest’ is actually a misnomer since, apparently, every person employed by the hospital and perhaps by the state of Utah, is required to come into your room several times a day at a minimum.
3. Your own bone marrow will have ceased production and your own blood cells will degenerate by this point, causing you to feel rather lackluster.  This step involves a significant amount of waiting.  Entertainment is provided by the parade of hospital staff marching through your room at every hour of the night and day.
4. On the day of transplant, healthy blood stem cells will be infused into your body much like a blood transfusion. Surprisingly, the transplant itself will occur as if it is no big deal.
5. Once in your body, the stem cells will migrate into your bones where, over the next few weeks, they will set up colonies and begin producing new blood cells. This sounds as if you don’t have to do a thing but sit there and wait for it to happen.  In fact, you will be so busy with sitting up, showering, dressing, eating, and entertaining a seemingly endless parade of hospital staff that you’ll feel exhausted.
6. During the first weeks following your transplant, your medical team will monitor you closely for complications such as infections, excessive bleeding, and graft-versus-host-disease.  Nasty buggers, all.  But most are temporary and can usually be controlled.
7. You’ll be given blood transfusions to supplement your declining blood counts as necessary.  You'll be given drugs to control complications of the transplant, drugs to counteract the side effects of the transfusions and drugs to counteract the side effects of the drugs. 
8. This step includes more waiting in the hospital.  You may amuse yourself by avoiding germs and trying to eat enough to satisfy your nurses. 
9. You’ll find that your bone marrow and blood type is now identical to your donor’s.  You will celebrate by having your childhood immunizations over again.
10. When you are released from the hospital you will make daily trips to the outpatient Bone Marrow Clinic. Over time, these will become weekly, then monthly visits.  Gradually, resume life.

Playing House in the Hospital

Day 13 in the hospital

Day 4 post-transplant

Roger has developed an aversion to hospital food.  Not to the food, per se, but to the plastic dishes and trays on which it is served.  Well, I must admit, it doesn’t matter what you order, it often tastes like an old thermos bottle.  Roger’s sense of smell seems to be heightened so he is especially offended by the “aroma.”  It is critically important that he keep eating, so I brought him a ceramic mug and bowl that I wash in antibacterial dish detergent and carefully dry after each use.  And I’ve been bringing in groceries and preparing food in the little break room down the hall.

Fresh fruits and vegetables are not allowed in the transplant unit because of the potential for molds and other contaminants.  Likewise with meat, cheese, dairy products and almost any food in it’s natural state.  They do allow us to bring in frozen and canned foods and anything that is stable at room temperature.  I try to bring in a variety so that Roger has choices.  Since he’s eating a la carte, I count and report his calories myself.  If his calorie intake drops below a certain level, they will infuse him with nutrients.  That is a last resort and we don’t want to go there for all the reasons you can imagine and more.

Our menu runs counter to everything we know about good nutrition.  We are trying to get as many calories as we can.  If Roger can only eat small amounts, then it had better be densely packed with calories. Canned soups, peanut butter and jelly sandwiches, TV dinners and packaged cookies will get boring in a few days, and then we’ll move on to plan C, plan D, and plan E….  In the mean time, food doesn’t have to taste like an old thermos.  Although you can't get them for 89 cents anymore, Swanson’s still makes a mean Salisbury steak. Did you know a single Mallomar has 250 calories?

Ties That Bind

A friend is someone who knows all about you and loves you anyway.

Studies have shown that people that have a loving intimate relationship with a partner are better able to cope with stress.  I would elaborate on that by saying that times of extreme stress call for a team approach.  Roger and I rely on each other, but we also have family and friends, business associates, acquaintances, medical support staff both here and at home in Missoula, and an extended network of transplant survivors that seems to be growing every day.  Altogether a pretty wonderful support system.

Each person in our life brings a particular strength, talent and point of view.  Some of you provide important anchors that give us reason to go on day after day.  Some of you make us laugh, or provide entertainment or comfort.  Some of you drive on slippery roads on our behalf.  Some of you bring expertise and experience.  All of you remind us that we are part of a larger world that exists beyond the walls of this hospital room.

On this day in 1994 Roger and I met.  On this day in 2003 we were married.  Today, we celebrate both anniversaries and "Day 2" post-transplant.

Thanks to all of you for celebrating with us.  Thanks for being a part of our world.

Iron Man and Man of Steel

There were too many things happening all at once this week.  I couldn't post fast enough!  By completing 140.6 miles of running, swimming and biking in just over 11 and half hours, Casey became an Ironman.

Casey gestures to his fan club.

Our grandkids cheered their Dad on.

Connor and Kylee

By surviving his first 10 days in the hospital, chemo infusions and finally a bone marrow transplant, all while keeping a smile on his face, Roger demonstrated that he is a man of steel.

Roger and his nurse, Nataliya during the transplant.

Happy Thanksgiving

Usually at this time every year, I'm in the kitchen and so I don't get to see the parade.  I'm tired; it can only be emotional since I didn't do anything yesterday.  But it feels good to just sit in front of the TV today knowing we'll order room service later.

The first 100 days after a bone marrow transplant tell if the new cells have taken and are reproducing or whether they are being rejected.  It is a matter of managing symptoms and side effects, and making sure no infections get started while the patient's immune system is non-existent.  We want to see a "graft versus leukemia" effect.  We don't want to see the "host versus graft" disease.

Roger's feeling quite well today.  He had bacon, eggs and coffee for breakfast and has been out of his room for two walks already this morning.  He's more energetic than I am.

Roger Gets the Good Stuff

You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometimes you might find
You get what you need

-- Rolling Stones

After months of preparation the transplant itself seems a little anticlimactic.  An infusion of Robert’s stem cells is underway.  Divided in two portions, it will take about two hours altogether.  The infusion is not too difficult for Roger, but he'll pay his dues over the next couple of weeks.

 

Robert and Roger together a couple of days before the transplant

We don’t know how to even begin to thank Robert for this generous act.  Medical science made this miracle possible and Robert has made it happen.  He’s our hero.

This is a little gross, so click away from the page if you’re squeamish.  After all that effort to collect the good stuff, I felt a need to capture a visual for posterity.

 The anticlimactic drip of a stem cell infusion

Roger gets the good stuff

Salt Lake City Blizzard

The Utah State Capitol Building, just a few blocks from the hospital.

The first blizzard to hit Salt Lake City in 20 years roared in last night.  It dropped about 5 inches of snow.  More remarkable was the howling wind and frigid temperatures.  Many of our blog followers have already experienced the same storm, so you know what I’m talking about.  Canceled flights, closed freeways, power outages, emergency travel only.  I was glad to be here with Roger last night and not have to worry about driving the steep hill up to the hospital.

It was a wild night even here.  The rooms in the bone marrow transplant unit are on a negative pressure system, which circulates air out of the patient’s room and does not allow recycled air in.  Apparently, due to arctic temperatures last night, a pressure device on the roof malfunctioned.  An alarm sounded in Roger’s room off and on for several hours.  Finally they determined the system was allowing contaminated hospital air with who knows what kind of germs to come in and they made us move to another room in the middle of the night.  It was not the best night’s sleep we’ve ever had.

Our thanks to Dave, for making sure Robert got to the hospital this morning despite the snowy roads!  One more day of collecting Robert’s stem cells should do the trick.

That’s the Way the World Goes Round

That's the way that the world goes 'round.
You're up one day and the next you're down.
It's half an inch of water and you think you're gonna drown.
That's the way that the world goes 'round.

John Prine

This is a rest day for Roger.  That means no chemo and no treatment, just a day to recuperate and prepare for the big day tomorrow.  He’s feeling a little better and is managing to eat and exercise in spite of having a hangover from yesterday’s drugs.

Here’s something sweet enough to put a smile on our faces today.

 Our son Chris, at home in Santa Fe

The blizzard that stopped traffic and knocked out power from Vancouver and Seattle, through Eastern Washington, Idaho and then Montana is about to hit us here in Salt Lake City.  I don’t know how bad the storm will be, but I brought an overnight bag just in case.  Local newscasters are making dire predictions and hospital staff are chattering nervously about how far they have to drive when their shift is over.  If the power goes out at the apartment, I’ll be better off here at the hospital tonight.  I’m not willing to risk not being able to get here tomorrow.  

Robert – drive safely and make sure YOU get here tomorrow!

The Monday Blues

Roger's not dancing much today.  Chemo drugs toxic enough to kill his own bone marrow have sapped his appetite and his energy. It makes us anxious to know things will get worse before they get better. But there is some comfort in seeing the hospital staff behave in the same way day in and day out.  They go about their jobs as if life were still normal; they are not alarmed.

How can we maintain a positive outlook and still be realistic about the effects of this stress on our lives? 

My attention span is short and my short-term memory is shot.  I feel lost and confused where a year ago I would have felt energized and challenged.  I keep reliving those moments on the phone with Roger when he told me the leukemia had come back as if it were the moment of impact in a bad accident.  I don't know if I'm hungry or tired or anxious or behaving strangely.  I seem to be disconnected from my own body. 

I expect that life after the transplant will never be the same.  I have to be realistic about that.  We will never again be carelessly optimistic.  We will never again see ourselves as bullet-proof.  But I have to believe it will be a good life, after all.  That's why we're here.