Day 49 Clinic Report

Lean and Mean on January 12, 2011

There are no startling improvements or big set backs this week.  Roger lost another pound or so (damn!) but otherwise, he's doing quite well.  His blood counts remain strong.  There is no sign of graft versus host disease. His vision seems to be improving a little and when it seems like it has improved as much as it's going to, he'll get new glasses.

His appetite has been better this past week.  I was betting he hadn't lost any more weight, so I was surprised at that news.  I just don't understand how anybody that eats like that could lose weight!  This diet wouldn't work for the average person trying to lose weight, that's for sure.  Perhaps his metabolism is nutty as his body tries to re-establish a "normal" way of operating.

I would like to know more about the role of nutrition in fighting cancer.  I'm so surprised that they seem to know so very little about it at the Bone Marrow Transplant clinic.  Everyone just shakes their head, as mystified as we are.
 
 All in all, a good clinic report.  We can't complain.

The Original Bone Marrow Boogie

After Candi found me through my Facebook Boogie  page, she invited me to write a bit about my “perspective of healing and surviving cancer after all this time”.  First, since she and I came up with the same title for our cancer adventures, I want to say something about how I came to call my memoir, Bone Marrow Boogie ~ the Dance of a Lifetime. The bone marrow is the juicy part of us, our very essence, where our energy is stored, as well as the birthplace of our blood cells, which made it the ideal metaphor for what I was attempting to convey. While I did not end up needing a bone marrow transplant, I endured the process of having my stem cells collected and stored; during the procedure I focused on picturing them dancing in my marrow as I watched my blood churn and spin.   Additionally, I love to dance, always have, the more impromptu the better. Whether in my kitchen, in line at the grocery store, or on a bona fide dance floor, I am dancing the jig of a lifetime as I contemplate how close I came and how lucky I am.  So it's a title of both acknowledgment and celebration, and in my mind it's crucial to do both.

Some of you probably know of Steven Levine’s work with death & dying.  I credit him for my firmly held belief that I was not responsible for my cancer; I was responsible to it.  The distinction matters, because too many people blame themselves for the diseases that befall them, even if their lives and lifestyles have been exemplary.  I chose to embrace my healing process, in lieu of drowning in self-recrimination.  Thank goodness!

I was diagnosed with acute B-cell lymphoma, on December 23rd, 1998. Now, 12 years later, at age 62, I feel blessed with good health and a whole lot of energy for life, and yet I still feel a bit superstitious proclaiming such good fortune out loud.  Even though the first two years post-diagnosis are the most critical for acute lymphoma, I remained vigilant and, at times, fearful for about eight years.  Anniversaries snuck up on me at a time when most people were celebrating the winter holidays, and I used them as opportunities to renew my pledge to live as consciously and joyfully as possible.

While I am no longer preoccupied with my own treatment and recovery, I am as mindful of life’s fragility as ever.  Two years ago my husband was diagnosed with early stage prostate cancer, and, after undergoing robotic surgery, he too has been given a clean bill of health.  He’s a runner and I’m an exercise freak.  We eat local organic food to the fullest extent possible, and we’ve never exactly been party animals.  Still we both got the BIG C, and had to face our mortality sooner than we’d planned.  While I no longer need to see my oncologist, I continue to work with my naturopath and energy healer, and I credit them as much as myself for my strong immune system.  Every day I touch the Earth and exclaim my wonder and gratitude for this moment, right here right now. It’s all a mystery.

In a recent interview with Maria Altobeli, for her blog, Mexicoinsmallbytes.com, she asked me to offer some tips for people undergoing cancer treatment. I hesitated to give advice, because, in my own experience, everyone’s journey through cancer – whether as a friend, healthcare provider, family member, or patient/survivor – is unique.

At the same time, I wrote Bone Marrow Boogie in part because previous cancer memoirs seemed so discouraging, and I felt I had a different story to tell.  I approached my cancer from both a conventional and complementary perspective, and I was fortunate to have practitioners who not only respected my wishes but respected one another as well. So, if you’re interested in my “to do” list, you can read that interview at Mexicoinsmallbytes.com, or in the back of Boogie.

Boogie is available free as an eBook in PDF format from Kota Press.

Boogie is on Facebook.  You can become a fan there.

There aren't many new copies of Boogie in circulation, but I love the idea of folks continuing to circulate used copies, which you can still buy at Amazon.

Janie Starr
January, 2011

Boogie Too

Early last fall, as we were preparing to begin Roger’s bone marrow transplant, we went searching the internet for information. We had heard from the doctors and scientists, but we wanted to know the personal stories of survivors.  What tips and techniques had they used that might work for us?  Search results were grim.  We found a few blogs on the topic, all focused on fear, powerlessness, and illness.  Decidedly, not helpful.

We had counted Roger as a survivor from the very beginning and it was vitally important that we maintain that confidence.  The scarcity of positive personal stories led me to the decision to write one myself.  A conscious effort to get into a positive frame of mind, as well as the daily discipline of writing and staying connected has been as important to me as it is to friends and family who depend on it for word of Roger’s progress.  I imagined Roger’s fight accompanied by music, the soundtrack of our lives.  At times, it has been a sentimental dip into lyrics that lift us and at times an emotional slide into opera, but most frequently it has been a ballsy and energetic boogie - the Rock and Roll music we grew up with.  Google makes it so easy to establish a blog; it’s possible to set it up and title it on an impulse.  And so, The Bone Marrow Boogie began.

 

In my apprehension about beginning this new phase of our life and my eagerness to do everything right (a silly notion in this upside down world), I failed to do the simple Google search that would have told me the title Bone Marrow Boogie was already in use.  Mortified, I discovered that fact a few weeks later.  I ordered the book online and contacted the author to confess.  Janie Starr generously granted her permission for me to go on using the title. 

 

Janie’s book tells the story of her journey, not through leukemia, but through lymphoma, a decade earlier. She had stepped from good health into a new reality created by disease and took an affirmative and accountable approach to her health.  It is the positive message I’d been searching for and had not found.  Janie has graciously offered to share her perspective now as a survivor.  You’ll see it posted here tomorrow.  It is a small world, indeed.

Boogie on.

How to Cook for Someone That Doesn’t Want to Eat

Picky, Picky, Picky.  That's the name of the game.

In addition to the kitchen cleanliness and food safety issues that I wrote about yesterday, I’ve learned some other lessons about how to cook for someone that doesn’t want to eat, lessons that deal more with emotions than with food per se.  This post might be better titled “Self-Preservation While Caring for Someone Else.”

• Don’t spend hours shopping for groceries and cooking fabulous meals.  You may think you can tempt your loved one into eating.  You can’t.  Working too hard for too long with little thanks will lead to resentment for you and guilt for him and that doesn’t help anybody. 

• If you work too hard preparing a meal, it puts stress on the person that is expected to eat it, making the meal look like a mountain that must be conquered.  If it looks like too much, it’s difficult to even make a start.

• If you’ve prepared food that is not wanted, just remove it.  No harm, no foul. 

• Don’t present your favorite recipe expecting that it will be received as a masterpiece.  Food is not welcome, but don’t take it personally.

• Think of food as medicine.  Offer it regularly, in small portions.

• Variety is important, but if you find a food that works, don’t be afraid to repeat it.  Go with what works.

• Make recipes that come together quickly and that don’t have a lot of expensive ingredients.  You may end up throwing most of it away.  That’s okay – waste is the least of your worries just now.

• Lower your expectations about quantities of food eaten, focus instead on quality.

•  Cook to please yourself if you enjoy cooking.  Take a day off from cooking every now and then if you need it.  Offer simple foods on your day off. 

• Sit down to eat and take the time to enjoy it.  Although the person that you’re caring for may be less than enthusiastic about food, don’t let it spoil your meal, or infringe on your time to eat it.

• Consult with one another.  Listen.  Collaborate.

• Be flexible.

• It bears repeating.  Don't take it personally.

Managing Microbes in the Kitchen

A lovely, fresh salad? Or a stew pot of bacteria?

Taking care of a loved one with a compromised immune system means relearning a lot of things you thought you knew. 

 

Recently I heard that 85% of the bacteria contaminating foods in this country didn’t even exist 25 years ago.  Unless you are able to eat locally grown foods, which is tough to do in winter, almost all your groceries are processed in factory farm storage facilities that serve the entire country.  When bacteria arrive at the warehouse from one contaminated source, they multiply and spread there and are delivered to supermarkets across the country.  We bring bacteria into our homes by the grocery bag full.  And, if we’re not careful, we can compound the problem by growing our own.

 

325,000 Americans are hospitalized each year with food-borne illnesses.*  For the most part, these are people with healthy immune systems.  Those with lowered immunity are less able to fight off bacteria and are at higher risk of developing complications because of it.  Think of the number of food-borne illnesses that must go unreported because they are mild cases or the symptoms are wrongly attributed to an intestinal virus.  Altogether, “food poisoning,” as it used to be called, is a big problem that is growing, in every sense of the word.  We can preclude bacteria from setting up colonies in our kitchens by following some techniques practiced by commercial kitchens and working in tips from the medical world.

You’ve all heard the maxim “Keep it hot, keep it cold, or don’t keep it” with regard to food storage.  But you have to consider not only the food, but everything the food has touched: the cutting board, the paring knife handle (it’s not sufficient to wash the blade) – every tool that you used once and set down to be used again later, the cupboard door knob that you touched with contaminated fingers, the inside of the refrigerator.  If you’re like me and use a dishwasher with a good hot water cycle, your dishes are clean enough, but that means you’re not filling the sink with hot soapy water every day.  You may have a breeding ground there. 

Wash the sinks, sink strainers and faucet handles every time you clean up after preparing food.  At least a few times a week, spray it with a bleach solution and give it an extra careful going over.  Once a day, spray cupboards and drawer pulls with anti-bacterial cleaner. Clean the refrigerator regularly, especially the drawers where you’ve stored unwashed produce.  Needless to say, meat should always be kept in a washable container, not directly on a refrigerator shelf.  Use paper plates in place of a cutting board.  Use paper towels instead of fabric dish cloths and dish towels. 

 

It’s not an environmentally friendly way of living, but it’s safe.  Under the circumstances, it’s what we have to do now.  We’ll do penance for the environment in other ways.

If this blog post has kept you on the edge of your seat, just wait till you see my series on cleaning bathrooms! 

Have you washed your hands???

*According to U.S. News and World Report, December 2010.

The Reader's Digest Condensed Version

The day flew by in a flurry of appointments.  To be perfectly truthful, while we were sitting in various waiting rooms, it felt more like time crawled by at a tortoise's pace.  Suffice to say the day was taken up by other obligations so I didn't have time to compose a nice blog post and find an apt photo and a quote to go with it. But I know some of you have been waiting for the after clinic report, so I'll give you the scaled down version. 

First, the not so great news:  Roger lost another pound.  One pound does not a crisis make, but if he continues to lose weight, this could become a real problem.  This week he needs to maintain his weight or even better, gain a pound.  Also on the not-so-great front, his vision is still very blurry.  It's difficult for him to either read or see at a distance very well.  He can see well enough to watch television, but he can't read.  He can see well enough to walk, but he most certainly can't drive.  We need to figure out if the vision problem is a side effect of medication, which would make it temporary, or if it's a side effect from the transplant, which would make it permanent, or if it's being caused by something else which would make it an unknown.  Hold this thought for us: it's only temporary.

Now the good news and the really good news:  There is still no sign of Host Versus Graft disease.  He is feeling a little stronger each day.  Even though his stomach is in no great shakes, he's tolerant of a wider variety of food with each passing day.  His kidney function has improved, probably due to the quart and a half of IV fluids he gets every night now. And, drum roll, please....all his blood counts: neutrophils, red blood cells and platelets have improved again!

You know Roger is competitive, right?  He always wants to do things just a little bit better than the next guy.  The quote of the day is from his P.A., Andrea Arnold, who says Roger is "miles ahead of most transplant patients at day 42."  That was all the encouragement he needed to make him want to go home and eat something.

Here's Roger!

I've been doing most of the talking on this blog.  You haven't seen Roger in awhile.  Here he is, alive and, if not well, getting there.

Day 41 post-transplant

Breakfast, Lunch, Dinner, Drinks and Dessert

Breakfast.  Roger has eggs and bacon or sausage every morning, plus fresh fruit, juice and about 1/4 cup of various pills.

Lunch - a high calorie protein shake.  If I concoct it just right, I can pack about 700 calories into one of these babies.

Dinner.  Mashed white potatoes and gravy and sweet potatoes seem to go down pretty easily.  He disperses the rest of the food on his plate to make me think he ate it.  I expect next I'll find bits of dinner hidden in his pockets.

Drinks.  Magnesium in a quart and a half of fluid.  Shaken, not stirred.

 

Dessert: more pills

You will no doubt wonder how anyone on a diet like this could lose weight.  Well, Roger doesn't really eat much.  Mostly, he pushes it around on his plate.  His taste buds don't work properly.  He's bothered by the texture of foods and he's not motivated to work at it. He's been nauseous for the last month, although fortunately, that finally seems to be abating.  He is rarely hungry.  He feels full before he even starts to eat. Foods that slip down easily without a lot of chewing work best.  I'll prepare anything he asks for, and I always add a few other things to his plate, figuring if it's there, he might just take a bite.  You won't see a salad on this low microbial diet.  It scares me to think I could not wash greens well enough to make them safe.  It's not worth the risk.  Anyway, why waste the effort of chewing on something that has no calories?

Healing from a transplant is such an unusual circumstance.  Maybe he needs more calories than normal to fuel healing his body at the molecular level.  On Wednesday we'll go for a clinic appointment and we'll find out if he's lost more weight.  If so, I could make a fortune on the internet selling this as a weight loss diet.

The Art of Healing

Today I went out on a nerve-jangling errand to a busy Walmart. Never go on a Sunday. For a happier life, never go there at all. 

I had to take down the Christmas decorations. I just had to. I can't live with Christmas decorations after New Years. Now the walls in our little apartment are stark-raving bare. So I picked up some cheap picture frames with the idea that an art project will kill two birds with one stone. It will give Roger something to think about and it will break up the austerity of these white walls. More on the art later, if he turns out something worthy of a photo.  ;-)

Roger's perspective on life is rather limited. Because he doesn't have energy or immunity, he doesn't go out except for short walks and, of course, to his clinic appointments. He still can't read because his vision is blurry. Of course we have our audio books and television, but that gets old, believe me.

He is disappointed that his energy doesn't increase perceptibly from one day to the next. That's normal for this stage of the game, but he's impatient. He wants to see more improvement faster. 

He went for a 30 minute walk today. That doesn't sound like much, but it's better than he could do a week ago. He grouses and says "it's more like a 30-minute shuffle." His impatience is a sign that he's getting better.  But, oh, what a long road still lies ahead!

I hope he builds up the steam to make a little piece of art or two this week. We need it!

A Numbers Game

0 the number of times I thought about the personal impact of cancer prior to 2005

0 Roger’s chances of surviving without this bone marrow transplant

0 the chances we’ll emerge from this transplant with a good credit score

1 in 4 the number of Americans that will be struck by cancer

5 the number of years a leukemia patient has to be in remission before they declare him “cured”

5 the number of years Roger was in remission before he relapsed

25 the number of additional years I feel I deserve to have my husband with me

38 the number of days since Roger’s transplant

48 the number of times I wash my hands each day

100 the number of days that mark the first milestone for survival of a bone marrow transplant

1500 the number of calories we struggle to get into Roger each day

9000 the number of Americans who are killed annually by AML leukemia

$263.8 billion the cost paid out by American families in 2010 to fight cancer

~infinite~ the number of days we’re willing to keep fighting

~infinite~ the amount of encouragement we’ll offer others who fight this disease on a personal front

~infinite~ the amount of gratitude we feel for those who learn how to treat cancer and those who research to find a cure