Live Strong in 2011

2010 has been a remarkable year in so many ways.  We’ll be glad to see the backside of it.  Our celebration this evening will be a quiet one, Roger with his bag of IV fluids and me with a cup of tea.  But make no mistake, it will be a celebration.  We have so much to be grateful for.  On New Year’s Eve, we traditionally take stock of the year just past and make our resolutions for the upcoming year.  This year our resolutions will be simple, but not easy.  If we need to be reminded now and then just how uncomplicated life’s most important goals are, well friends, it’s your job to remind us. Don't hesitate.

• Get healthy.
• Stay healthy.
• Stay afloat financially, make a reasonable dent in our health care debts.
• Serve peace.
• Have a laugh every now and then.
• Honor those who have helped us (so many, in so many ways). 

 We welcome in 2011 and wish all our friends and families a bright, prosperous and healthy future. 

Oh, and – check out the Livestrong Foundation for straight talk on cancer survivorship.  They provide a voice of reason in a complicated and stressful world.

Sleep Makes All the Difference

 I declare today to be a new day.

Roger was dehydrated earlier this week and had to have some fluids delivered by IV.  Between the Bone Marrow Transplant clinic, the pharmacy, and the Home Health company, that simple prescription became much more complicated than it needed to be.  To make a long story short, we had a couple of stressful days that started too early and ended too late.  Oh, and I should mention that after we finally got Roger's IV connected at midnight (14 hours late), a fire alarm in our apartment building went off.  That added another hour of heart pounding excitement.  We didn't have to evacuate, but I spent from midnight until 1am waiting for the all clear from the fire department and planning how I would manage to get Roger and his IV pole out of the building without contaminating either.  All that drama was followed by a brief, unrestful sleep and a descent into self pity the next day.

I had been sleeping in the spare bedroom since Roger's discharge and waking several times at night to go in and check on him.  Last night, I was so tired and depressed.  I crawled into bed with him for the first time in 7 weeks.  We both fell asleep right away and slept straight through for 10 hours.  And we both have a much better attitude today.  It's amazing what a good night's sleep will do.

Another Brick in the Wall

 Day 35 post-transplant
1/3 of the way to our "100 Days" of survival

I think I must be losing my mind.  I am treating my husband as if he were a child, and not in a nice, nurturing, good parenting way.  I use threats and circular logic on him.  “If you don’t eat, you’ll have to go back to the hospital.  How can you stay out of the hospital if you don’t eat?”

I’ve always wondered why some people treat others that way.  It just dawned on me.  This behavior comes from a need to have control and knowing you have none at all.  It is a last resort, an act of desperation.  

Roger looks up at me with sad, sick eyes and I know he would eat if he could.  He does want to stay out of the hospital and he wants us to behave like the grownups, good communicators, and good partners we’ve always been.  There are so many things making his life miserable these days.  I’m sad to know that I’ve become one of them.  All in all I’m just another brick in his wall.

Listen to: Another Brick in the Wall -- Pink Floyd

Bonjour, Qui Parle ?

This picture makes perfect sense. 'Cause, if you were going to get good news, naturally it would be via an old rotary phone and in french, right?  Among the billions of images on the internet, very few are actually offered free for use.  An even smaller subset seems just right for the occasion.  So, pick up and say 'Bonjour!'

Roger had his first post-discharge clinic visit today.  I was anxious about it because for the last couple of days he's been more than usually exhausted.  Any blip on the radar makes me anxious these days.  But, overall, the report was quite good.

First the bad news: he's still losing weight.  He lost 3 more pounds this week despite my best efforts. Next we're going to try protein shakes made with eggnog as a midnight snack.  Anyone else have any ideas?  Think of everything you know about how to keep from gaining weight, and reverse it.  Seriously, I'm open to suggestions.  Please comment below or email me.

Now the good news:  All Roger's blood counts are up.  His red blood cells, neutrophils and platelets are at nearly normal levels!  He made the clinic's "Most Healthy for a First Visit After a Transplant" list.  That's not to say he's perfectly healthy; he's got a long way to go yet to make that list.  Even so, considering what his body has been through the past month, I can't complain.

After some adjustments to medications (there are no fewer pills this week, rats!) and some tips on watching for signs of Host Versus Graft disease, we are all set until our next clinic visit.  Again, we were told that if Roger needs to be readmitted to the hospital, we are not to consider it a set back, but just part of the healing process.  (I know, but. . .)

I know you've all been thinking "growth" and I swear those positive thoughts ricochet around the universe and have an impact on us.  I know they do.  Please keep thinking them.  We still have a long road ahead of us.

Au Revoir!

P.S. I'm sure my french-speaking friends will make me regret this ill-advised venture into an unfamiliar language. ;-p

The Best Smoothie

Roger doesn't have enough appetite to eat 3 full meals a day.  So we make a big breakfast and supper every day and have this high protein smoothie for lunch.  This one's mango, but you can make any flavor you like:  strawberry, blueberry, blackberry, banana, chocolate. . .use your imagination.

1/2 cup silken tofu
1/2 cup greek yogurt
1 fresh banana
1 single serving packet Perpetuem* **
3/4 - 1 cup Frozen mango or berries
1/2 cup rice milk
1/2 cup soy milk

Blend.  Enjoy.
Turn up the thermostat and pretend you're on a tropical beach.

This recipe makes two servings.  The calorie count will vary as you adjust it for the flavor and consistency that you like.  Made as above, it contains 450 calories per serving.

*Hammer Perpetuem is a high protein drink used by marathon runners, 300 calories of slow release nutrition.  It is an orange/vanilla flavor.  Hammer also makes a Sustained Energy supplement that's unflavored.  That's the one we use with frozen berries.  They can be purchased in running supply stores.  If you can't find Hammer Nutrition products, you can substitute any powdered protein supplement that you like.

**Thanks for the tip, Casey!

P.S.  I found out Roger is not supposed to have uncooked tofu, so nix that ingredient for cancer patients.  And, more protein is better.  I've gotten Hammer Whey Protein and Hammer  Soy Protein and I add one scoop to the shake.   I alternate one day whey, the next day soy.  I really think this shake is what finally stopped Roger's weight loss.

Gratitude

Day 31 post-transplant

Today is a day to appreciate life.  The sun is shining brightly.  We've talked to many friends and family on the phone and will continue to do so as the weekend goes by.  We're listening to an audio book and Roger is watching an NBA game in the background with no sound.  Soon, I'll start making a nice little Christmas dinner; a chicken instead of a turkey, all the nice things in miniature.

Roger has had a few good days in a row.  He feels well, eats well and wants to go outside for a walk.  He seems to be getting stronger each day.  Is this a trend?  Christmas is a good day to be alive!

I'm Dreaming of a Red Christmas

It's nearly 40 degrees here.  That may be normal for Salt Lake City on Christmas Eve, but it seems almost balmy to us Montanans.  We went out for a short walk earlier. Roger wore his mask and gloves, but thankfully, no hospital gown.  He's good for about 10-15 minutes and then he has to sit down and rest.  That's okay.  Being able to walk outside in the fresh air even for a few minutes seems like such a blessing.

Dear Santa, all we want for Christmas is strong growth of new blood cells.

Christmas Eve Eve

When progress seems slow, it's good to look back and see how far we've come. Blog posts from a month ago seem like ancient history.

Some of our friends have asked if Roger was released from the hospital too soon.  That's a good point and having him at home presents some new challenges.  But, rest assured, they discharged him as soon as they safely could, not because they needed the hospital bed, but because it's so important for him to begin to feel normal again.  Too many nights of interrupted sleep and too many days of being immobile really begin to make a person feel like an invalid.  At some point, life in the hospital does more harm than good.  Here in our own apartment, Roger sleeps better, eats better, exercises more, and, believe it or not, he's less exposed to bacteria than he was in the hospital.  Other important factors are his state of mind and his level of contentment.  Yep, Roger is better off here now.

As for the challenges...switching his medications from IV to oral means having a boat load of pills to manage.  The schedule for pill taking is complicated and requires careful attention. He is still on one IV medication (magnesium) that runs over the course of 2 hours each evening.  That's been an education, but I think we've got it mastered.

Food remains a challenge, and it utterly defies logic.  He refuses foods you'd think would be comforting, but then at the next meal he'll eat something unimaginable.  He was hardly able to eat breakfast or lunch today, but then wolfed down chili for dinner.  I manage his food by offering lots of options and make sure he gets in enough calories, even if his overall diet is incomprehensible to me. He finds home cooked food more appealing and is able to eat more.

Roger is safe at home on this Christmas Eve Eve.  Don't worry, I'll keep my eye on him.

A Quiet Week at Home

Roger was checked at the BMT outpatient clinic this morning and we're cleared to stay home until next week.  I hope my blog postings get really boring during the interim.  We don't want any excitement.  Our only plan for the holiday is to fatten Roger up a bit.

Have a wonderful Christmas, everyone.  Enjoy our video.  This is really us.  Seriously.

Goodbye to the Hospital

Day 26 post-transplant
Day 32 in the hospital
Day 1 of the rest of our life

Getting discharged requires a lot of meetings: the pulmonologist, the oncologist, the pharmacist, the hospital social worker, the home health people, the discharge nurse, the list goes on and on.  We receive information from each and wait for the next.

I make Roger one last bowl of soup in the BMT Unit kitchenette.  As I wait for it to heat in the microwave, I notice a large family gathering in the corridor.  They are crying.  Some of them are hugging each other or fumbling for kleenex. Some just look lost.  It's as if my eyes are steel beebees and that family has magnets embedded in them.  "Don't stare," I tell myself.  I just want to get Roger's soup and get back inside his room.  My eyes keep going back and back.  No one asks about a leukemia patient that is absent.  We choose to believe they've gone home.

Later, we see the hospital in our rear view mirror and we know how lucky we have been.

Look Ma, No IV Pole!

Superman poses in mask, gloves and gown

Roger has been taken off all IV medications during the daytime. After dragging that pole and a web of tangled IV lines around for a month, this is freedom!   It was fun to walk together in the hall today sans pole and share a laugh.  It's good to see him with a spring in his step.

In the top photo, he poses beneath the Outpatient Clinic sign.  After he's discharged, he'll become a regular in the cast of characters who visit there a few times a week.  He'll still need to wear the mask and gloves when leaving and entering the clinic, because hospitals are among the germiest places on earth. He'd like to be free of the rigamarole, but all things will happen in their own in time.

Being switched from IV medications means he's now taking about a half-cup of pills several times a day.  Today is the test to see how his stomach tolerates that.  He may be discharged within the next couple of days.

Here he is, in his germ-free room, without the Superman outfit:

 And here I am:

Objects in Mirror Are Closer Than They Appear

Our reflection in the convex mirror in the hospital corridor. 

Roger doesn’t feel well today, but he's doing well.  Some days are like that. 

His blood counts continue to increase.  His neutrophil count is 900.  Dr. Peterson had a big smile on his face as he declared that engraftment has occurred. That means the transplant worked. The new bone marrow has colonized and is reproducing.

Rumor has it Roger will be discharged early next week if he continues on this trajectory. He’s being switched from IV to oral medications.  Getting in enough calories continues to be a big challenge.  It's scary to think about taking him home when he's not able to eat enough.  On the other hand, I think he'll eat better at home than he does in the hospital.  Frankly, I'm a much better cook.

Roger may look a little green around the gills, but he's closer to good health than he appears. 

Gliding

Those of you who ski know that "graceful" does not imply "easy".  It takes training, strength, luck and most of all, a lot of practice.  It takes effort to make a run look effortless.

In the case of a bone marrow transplant, graceful means a smooth, steady and regular increase of blood cells.  Roger has not experienced a sudden growth spurt that could bring unpleasant side-effects with it, but a regular day by day increase.  It has been called "graceful," but it's not effortless, believe me.  It has taken a medical team the size of a small army with all their combined years of education and experience.  It has taken Roger's determination and willingness to work hard and it has taken an incredible amount of luck.

The trick is to make this look easy.

The Road Ahead

30 days in the hospital

21 days post-transplant

Roger’s neutrophil count has increased to 400.  When it hits 500 and stays there for three days, they’ll start talking about discharging him from the hospital.

As Roger walks in the hospital corridor, I hear compliments echoing up and down the halls.  Seriously!  Doctors and nurses congratulate him on the fact that he’s been able to eat enough every day that he has not needed TPN (total parenteral nutrition) at all.  Apparently that is rare with bone marrow transplant patients.  He’s on bacon and eggs for breakfast again, so I hope we’re past the nausea and lack of appetite leg of this journey.

I’ve been so focused on getting Roger well enough to be discharged that I hadn’t thought much about how I’m going to take care of him once I’ve got him home.  I’ll be given an orientation to home care, including protecting him from germs and malnutrition, maintaining his IV lines and perhaps even giving him IV medications.  Yikes.  Have I mentioned that I never wanted to be a nurse?  This is not my forte.

They tell us that we should count on him being readmitted to the hospital once or twice before we’re done here.  Almost everybody comes back with an infection, graft versus host disease, or other complication.  That’s just the nature of a bone marrow transplant.  Knowing Roger, he’ll take that as a challenge; he’s got to prove himself to be more capable than the next guy. 

Are we half-way there?  Are we three-quarters of the way there? I wish I knew.

Maestro, A Little Progress If You Please…

Cancer #1, 2010

We’ve moved into classical music.   Ravel’s Bolero is wonderful “growth” music.  Either the Puccini, or the Marinol* inspired Roger to make art, or perhaps it was the combination of the two.  It’s a challenge to make art with materials you can find at Smith’s Grocery, but if anyone could do it, Roger could.  

*Marinol: synthetic cannabinoid

2 Cool 2 Disco

You think I'd crumble
You think I'd lay down and die
Oh no, not I
I will survive
as long as I know how to love
I know I’ll stay alive
I've got all my life to live
I've got all my love to give
and I'll survive
I will survive 

Gloria Gaynor

Roger and I were much too invested in rock and roll to give in to the lure of disco.  What happened to us, have we gotten so old that we’ve lost our cool?  It doesn’t matter anymore.  Try to maintain a scowl when you hear this Gloria Gaynor song – the number one hit from 1979.  It can’t be done.

Everything is going well, but time is beginning to drag.  We wait while the days pass, for Roger’s blood counts, appetite and energy to increase. 

 

In the mean time we dance – in a modified way – to songs with a good beat and lyrics that make us smile. 

Alone Again...For Awhile

I stayed with Roger at the hospital until late last night playing a Scrabble card game. I didn't want to go back to an empty apartment.  I thought with Casey and Taylor gone it would be lonely there.  Well, it is quiet and tidy, but it's not too bad.  The fridge is full and there are cheerful Christmas decorations everywhere, welcome reminders that there is always love and connection nearby - only a click or a phone call away.

On to the task of the upcoming week: get Roger well enough to come home and keep me company there.  I can live with that.

Don't Get Cocky. . .

 17 days post-transplant

Things have been going so well for Roger; his story is a textbook description of how an allogeneic bone marrow transplant should go.  However, we've been cautioned not to get over-confident.  There still could be some difficult days ahead that would be well within the range of normal side-effects.  We shouldn't feel too disappointed if that happens.

He ate a real breakfast this morning, not a protein shake, and has been out walking laps in the corridor.  His neutrophils continue to come in at a nice, slow and steady rate. 

We said good-by to Casey and Taylor and sent them back to their respective families.  I'm so grateful to them and their spouses for the tremendous gift of their visit. They helped me so much that I feel re-energized and able to continue helping Roger.  We're going to get through this.  I've been saying it all along, but now I'm beginning to believe it.

I'll try not to be cocky, but I am very, very pleased with the way things are going.

Slow and Steady Progress

25 days in the hospital
16 days post-transplant

Roger is tired today.  It's 2:30pm and he hasn't been out of his room for a walk yet.  His body is hard at work, although it's not noticeable to the naked eye.  His blood counts continue to rise slowly.  We've been told to expect that he will feel lower energy on some days and higher energy on others, so this is not discouraging.  If he continues at this rate, he'll start to develop an appetite within a few days.  Until then, we'll baby this new growth along.

There's Nothing But Good News Here

Casey and Taylor decorate our little apartment for Christmas.

Roger's neutrophil counts are up from yesterday, his platelet counts are increasing on their own and his red blood cells are holding steady.  He has not needed a transfusion of red blood cells throughout this transplant.  That is truly remarkable.  He is feeling a little weak and slow, but otherwise not bad.  When I came into the hospital to see him this morning, I had to catch up with him on his walk...making his 10th lap.  His body is doing exactly what  it is supposed to do, and doing it very well.  The biggest challenge now is eating.  He finds it very difficult.  About the only thing he can get down are protein shakes and mandarin oranges.  It's a vicious cycle.  He needs to get calories in to make blood cells and make blood cells to improve his appetite so that it's easier to get the calories in.  We want slow and steady progress on all counts now. 

Yesterday Casey flew in from San Diego and Taylor from Vancouver B.C.  When they strolled into Roger's hospital room, at first I didn't recognize them.  Their faces looked familiar but were so out of context.  I was so surprised, and then, true to form, I burst into tears.  It's been 7 years since I've seen both my kids together.  A little distraction from the hospital routine?  You bet.

Roger is happy.  I am ecstatic!

Something is Happening Here

Roger is slow and sleepy.  He lacks focus and is prone to nod off several times a day.  He reports strange dreams.  His mind wanders to weird places even while awake.  He fights nausea all the time now and can barely eat anything.  Yesterday it took him 3 hours to down an 8oz protein shake.  And yet, his medical team seems pleased, delighted even, with his progress.  They say he is responding like a patient who had been transplanted with his own cells rather than those of a donor.

They attribute the fogginess of mind and the strange dreams to the medications: anti-biotic, anti-fungal, anti-virus and anti-rejection drugs.  He'll be weaned off them all in time.

It's hard to celebrate when Roger feels ill, but his doctors are tickled pink.  Today is Day 14.  His platelet count is holding steady and his morning blood test shows neutrophils are present!

Fallow

Everything in nature will recharge itself, given time.

Roger's bone marrow is getting ready to be productive again.  It has been prepared and seeded. It's too soon for signs of growth, but we know things are happening in the deep, dark recesses.  What do we do now?  We wait.

Sam I Am Not

I spend a big part of my time pushing food at Roger and watching him flatly refuse it. Resources include, of course, the hospital cafeteria, which has now become completely unacceptable, a little kitchenette here in the Bone Marrow Transplant Unit with some basics stocked, and a supermarket about 3 blocks away. 

Roger is of the opinion that the Campbell’s chicken noodle soup and saltines in the cafeteria and kitchenette are inferior to those sold in the store, and he won’t eat them.  So I run to the store to buy them.  Of course they are as identical as two cans of manufactured soup and two saltines can be and he won’t eat them.  Then he thinks he might eat peanut butter on white bread if the bread was very fresh and if it’s the same brand of peanut butter that we use at home.  So I run to the store to buy bread and peanut butter.  Same story.  He remembers having a taste for fruit pie.  Say no more, I’m off to the store.  And it’s no go on the pie.  Fueled by rare, intermittent reinforcement (he swallowed the yogurt smoothie!) I keep trying.

I try to act on any suggestions Roger gives and I offer choices.  I am limited as to what I can bring in to the hospital.  The rules for bringing restaurant food into the hospital are very strict.  I can’t take the time to cook at home and don’t want the leftovers since I am alone there.  The foods that are successful seem to only work once.  He never wants to eat the same thing again.  If he can get down a few bites of anything, I consider it a success.

We’re stockpiling quite a supply of groceries.  With no storage space here in the hospital room, I haul the failed experiments home to the apartment.  But seriously, I don’t want to eat Campbell’s chicken noodle soup and saltines either.  I would not eat it in a car.  I would not eat it in a bar.  I would not eat it here or there.  I would not eat it anywhere.  If I get sued for unauthorized use of the photo, I’ll pay off the debt with inedible groceries.

Here's to Better Days!

This is Day 10 post-transplant.  I lost track yesterday and said it was only day 8. I think I was tired and distracted.

First, the good news.  Roger's adverse reaction to the platelets yesterday seems to have been a one-off.  He is looking and feeling better today.  Still, they will medicate him each time they give him platelets now, just to be on the safe side. We have been very lucky with the way things have gone the last two weeks.  Both the effects of the high dose chemo and the effects of the early post transplant have been tolerable.  Yesterday was a scary reminder that things can go bad rather quickly.  We don't need that kind of excitement again.

Typically, between Day 14 and Day 21 (December 8 - December 15) there would be signs that the new stem cells have engrafted.  When that happens, his blood counts will begin to come up and  he'll have more resistance to infection, but he may also show signs of "host versus graft disease."  This could include a wide range of symptoms including mucositis, lack of appetite, nausea, fevers, skin rashes and more. This is a time when weight loss could become a problem.  It's why we worked so hard to pack on calories in advance.

It's important to remember they have done a lot of bone marrow transplants here at the LDS/Intermountain Hospital, and they've had a lot of successes.  They have seen the same complications and side effects many times and they're prepared to deal with whatever comes up.

We'll be watching for signs that the transplant is working.  In the mean time, thanks for the suggestion of holiday eggnog, Sue. Roger drank it and that's another 500 calories to the positive!  Let's all raise a glass to better days!

Cancer Sucks

Day 16 in the hospital
Day 9 post-transplant

I'm putting on my game face: still positive, but  realistic.  We were naive enough to believe Roger would be the exception to the rule about unpleasant side effects to this treatment.

He had a bad reaction to an infusion of platelets this morning.  His blood pressure shot through the roof, his body rigorized, meaning he experienced severe chills and shivering associated with a fever.  His temperature hovered around 102 most of the day.  They packed ice around him to bring it down.  This was our first truly scary day.  And in the end, it was a zero sum day.  The fever burned up the platelets he'd been given and so he got no benefit from them.  He had to be given more this evening.  This time, he was pre-medicated to prevent the adverse reaction.  When I left at 9pm he was tired, but doing much better.   

Even though we chose to disbelieve what we were told about side-effects, I realize it is helpful to know what to expect.  Over the next few days I'll try to relay some of that information so that you'll know what to expect.

Something to Smile About

I had a terrible internet connection at the hospital today.  I spent a couple of hours fooling around with it and ended up deleting some things from the blog that I didn't want deleted.  Cripes!  Some days it doesn't pay to get out of bed. I got back to the apartment later than usual, dog tired, but finally got a reliable connection. I found these photos waiting for me in my email.  At last, something to smile about!

Daughter Taylor and Son-in-Law Rod

 I like this photo a lot, even though Taylor labeled it "leg cramp" because you can see her face.

They play on a co-ed hockey team in B.C. called FOGG (Fat Old Guys and Gals).  Not a chance.  Nobody that plays hockey is fat.  Skating burns a lot of calories.

Roger had a good day today, all things considered.  He had another infusion of platelets and felt a little perkier.  He ate enough to get in enough calories so that I would  stop hounding him.  He is feeling some effects of the low blood count, but it's manageable so far.  I wish he felt even better.  He'll get there, in time.  In the mean time, Tay and Rod, get out there and win one for the Gipper!

No News...

 

Roger's blood counts continue to decline.  It's normal for this stage of the procedure but, even so, it's difficult to watch him go through this.  He's cold and tired.  He has no immune system at all now so we must be extra careful about germs.  My hands are dry and cracked from constant washing.

They gave him an infusion of platelets today because of the danger of bleeding.  It won't perk up his energy, but it will help to keep him safe.