The New Normal

Be the Match workshop for transplant recipients and families

When I agreed to a stem cell transplant, I only knew that it was my best chance for a cure. I’m in complete remission. The transplant did save and extend my life. I can think and write and meditate. I can get myself here and there. I’m able to appreciate and enjoy this beautiful life.

It’s probably good that I’m only now fully hearing from others what my body has been trying to tell me: that these ups and downs might not be temporary, but rather my new normal.

Reading and Writing

It’s a beautiful spring afternoon in Houston. I hope you’re comfortable and safe, wherever you are.

A brief update on my health, for my friends who like keeping track of me: I’m generally feeling pretty good, still managing limited energy. In the last month my liver enzymes got too high; there’s a concern about graft-versus-host disease in the liver, so my doctor started me on Prednisone again. After two weeks of steroid, not only did my liver enzymes improve, but hemoglobin and platelets dramatically improved. No one seems to have an explanation for that, yet. Now, I’m once again tapering off Prednisone, and lab tests this Thursday will be important feedback. 

This new immune system is eleven months old. (Its “birthday” is March 26.) I still haven’t received my “childhood” immunizations, because I have to be off steroids before receiving them. This means I’m vulnerable to every childhood illness, as well as cold and flu and everything else. I’m careful about going into crowds of people. I try to stay a room away from children under four.

I am reading a lot lately, more than I ever have. I’ve read nine books since the first of the year. (Find me on goodreads.com.) When I was sick I went for months without reading anything. It feels good to dive into books again, both fiction and nonfiction.

I’m writing a lot, too. My latest musings have been on the subject of silence–the emotional spectrum of silent experiences and responses to silence. 

Monday, Feb. 27 is Shambhala Day, the Tibetan new year. The Year of the Fire Rooster! I’ll have more to share on that subject next week.

Cheers and love to you all.

Working it

Sleep has been elusive lately. From one night to the next, the Ambien might work, or not; the melatonin might work, or not. One night I took a Benadryl for my allergies AND an Ambien for sleep, and that worked too well…

I’m on a steady dose of Prednisone again (thus the insomnia), because my liver enzymes are elevated and it’s unclear why. My transplant doctor suspects I might be dealing with graft-versus-host disease (GVHD) in the liver. I see a GVHD specialist next week.

For now, sleep, or the lack thereof, rules my life. If I have a particularly bad night, I might lie in till noon, and I hate not having a morning. When every day is different, I can’t get into a regular ritual and routine. My husband gets home around 6:00 pm, we enjoy dinner and watch something together, and then it’s time to turn in. I do what I can to relax, rest, hope to sleep, and look forward to a better day.

Last night the melatonin worked, and I got up around 9:00 this morning. Time for both breakfast and lunch!

The first hour or so after getting up usually sucks. My heart races when I just walk from room to room. It’s disappointing when I can sit up in bed in the morning feeling alert, and then feel exhausted by the time I’ve walked from the bathroom to the kitchen. But it’s undeniable, this fatigue. I just have to pay attention and work with it. When I don’t push myself, I usually feel better after I’ve been up an hour or two.

Working with it continues to take new forms. When I’m tired I sit down for just a few minutes and get up again. When I have the energy, there’s laundry to do, and always some tidying up. Some days I follow whims, like the day I made granola from scratch (wonderful), and yesterday, when I made yogurt. (I’ll do better next time.) 

What I want is a reasonably regular schedule for two activities: formal meditation practice, and writing.

After forgetting an appointment last week, I ordered a planner. For the first time in a long time, I have a fresh, new, spiral-bound landing pad to capture my intentions and goals, and schedule (and re-schedule) my time accordingly. I’ll use this simple tool to revisit my priorities–and plan my shifting available time–with fresh eyes.

The Call to Adventure

Today I reread an old email newsletter from an astrologer friend, Joseph Crane. In it, he comments briefly on the differing connotations of the words “journey” and “adventure.” This inspired me to do a bit of reading and review.

How timely. I’ve been saying that I don’t particularly care for the phrase “cancer journey.” It doesn’t bother me if it’s meaningful to others, but it doesn’t seem to describe my experience. 

For me, cancer (more accurately, currently, the side effects of cancer treatment) is not a special journey. At least I want to remind myself that it isn’t. I won’t disagree that it’s a “thing” to contend with, something that has changed my life and that of my family. But in both a broader and a smaller sense, cancer is simply what’s happening. 

This cancer has been a wake-up call, and continues to be, I can say gratefully. But many daily experiences can be wake-up calls, if we’re paying attention and not dismissing them as “negative.”

“Journey” derives from Latin and Old French, originally meaning a day’s travel or a day’s work. It has since taken on a secondary meaning: according to Google, “a long and often difficult process of personal change and development.”

But consider the meaning of “adventure.” The word derives from the Latin, having to do with arriving. The current definition: “an unusual and exciting, typically hazardous, experience or activity.”

This brought me to renew my familiarity with The Hero’s Journey. One of the best resources discussing the universality of the hero’s journey in myth, religion, and fairy tales is The Hero with a Thousand Faces by Joseph Campbell.

For now I’ll keep this brief. Here’s a sentence by Campbell that made me think of cancer as the herald of adventure:

The herald or announcer of the adventure is often dark, loathly, or terrifying, judged evil by the world; yet if one could follow, the way would be opened through the walls of day into the dark where the jewels glow.

Walking

After a short night of sleep last night (I’m still on a low dose of Prednisone for a few more days), I finally got myself up and out of the house by lunch time. I headed to W. 19th Street in the Heights and finished some last-minute holiday shopping. Between the Heights and Amazon, I successfully avoided malls this year!

I came home, emptied the car, and went for a walk. I cannot emphasize enough what a big deal it is for me to feel like walking when I’ve already been shopping! I hope I never take such energy for granted.

img_20161222_160007512I may take it for granted at some point. Then I hope I’ll remember once again to appreciate it.

Now a short rest before starting a bunch of gift wrapping…

Gifts

Good news is always the best kind of gift. This time last year, right before Christmas, Jessica, the Stem Cell Transplant coordinator, called me to say they had found a stem cell donor for me. The donor was a 100%, perfect match. 

Jessica sounded almost giddy with excitement. I learned later that the team had started to worry. They were having difficulty finding many donor options for me. They were so relieved to confirm not just a good match, but a perfect one (14/14 alleles). My doctor called me her “Christmas miracle.”

Yesterday I received a different kind of good medical news. My kidney function is dramatically improved for the first time in many months. My doctors agree that the cause of the problem was TMA (thrombotic microangiopathy), and that the TMA is now “resolved.” Bye, TMA.

I was hospitalized for the effects of TMA in June. The immunosuppressant medication Tacrolimus, which is standard issue post-transplant, caused my TMA. TMA results in a cascade of effects, among them lower hemoglobin and higher creatinine levels.

Healthier kidneys, no more TMA–it’s a huge relief. The news nicely confirms how well I’ve been feeling the last few days, both physically and mentally. With healthier kidneys and good management of my blood pressure, I feel more energy during the day, so I’m more active. Once I’ve finished tapering off the current course of steroids, I’ll sleep better too.

Last weekend, before getting the news, I felt inspired to revisit my Qi Gong and lengthy meditation practices for the first time in, well, a very long time. These practices put me in touch with “life force energy.” We all have life force energy while we’re alive, but circumstances and our untamed minds can distract us from staying in touch with it. As a result we feel less alive. 

The last 14 months have been life-threatening, draining, challenging. I am realistic enough to know there are likely to be more bumps on this road. There are no guarantees. So I’m grateful for the practices that help plant me in the center of my precious life. I appreciate the committed doctors who have been so dedicated to making me well. I’m thankful for all my friends and family who share their warmth and caring.

To you and yours, Merry Christmas, happy holidays, cheerful Solstice. 

An Infant Immune System

I was at MD Anderson this morning for lab tests. I’ve been getting them pretty frequently lately, once or twice a week, while the stem cell team continues to monitor my hemoglobin and creatinine levels. (I’ll write in another post about my adventures over the last six months with hemolysis–hemoglobin breakdown.)

After a delightful lunch break with my friend Marlin, I returned to MDA for a follow-up with the hematologist. While waiting in Hematology, I received a follow-up call from a nurse in Stem Cell. She said this morning’s lab results show my hemoglobin dropped since last week (not good), and creatinine had bumped up (also not good). Not terrible, but not great. So I’ll be back tomorrow for a unit of blood.

This is one reason why it’s hard for me to make plans. 

It takes at least a year for the immune system to recover after a stem cell transplant. It can take people the better part of two years before they feel they have significantly improved. My transplant was on March 26, 2016, so my new immune system is not even nine months old.

Waking up

As a teenager I learned the fine art of pretending nothing bothered me. I got pretty good at it. At times when nothing seemed to be going well at home, actually at the worst of times, I felt I fooled everyone (except, of course, my family, but they were going a little miserable, too).

I carried this habit well into adulthood. It took a conscious effort over many years to stop trying so hard to fool others and myself. Gradually, with the support of my meditation practice, I found the bravery to be just as confused as everyone else, and not have to have everything figured out. I also discovered some clarity and even cheerfulness when I relaxed the tremendous effort it took to wear a mask of perfection.

Beginning in 2011, it seemed that I had a whole new level of self-honesty to learn. I got sick with one thing after another: bone spurs in both shoulders, carpal tunnel syndrome, rheumatoid arthritis. I managed to endure a lot of pain and put off going to the doctor, thinking there was something I was doing wrong: I just needed to exercise, get more rest…. 

I was 50, but I thought of myself as a “young 50.” My body couldn’t possibly be falling apart! I preferred to keep working and hoping things would get better. One ailment at a time, when I couldn’t stand it any more, I finally went to doctors and got appropriate treatment. 

I had faced uncertainty and impermanence in my life. But I realized that facing a loved one’s death and facing my own aging and mortality are two very different things.

In 2013, I was diagnosed with cervical cancer. The symptoms scared me, so I didn’t put off seeing specialists, and even got a second opinion. I had a hysterectomy and ovaries removed, and follow-up scans every three to six months to confirm I was cancer-free. Recovering from the surgery, I eased back into work over the next few months, and eventually was working full-time again. Back into old habits, pushing myself too hard.

Last year, in the fall of 2015, I was hit with something much more dire. My symptoms developed over a couple of months. I put off going to the doctor once again. I was just tired, overworked, out of shape…. Before getting a diagnosis, I was first directed to physical therapy for my leg pain. PT didn’t help, but I was too passive about the process to speak up. When I finally got a blood test, the doctor sent me to the emergency room for severe anemia the next day.

After five days of inpatient testing, my husband and I met with the doctor. I will never forget the look on Dr. P’s face. He is a handsome young man, and since meeting him in the hospital I had enjoyed seeing him smile. Now he looked at us across his large polished desk, stacked with journals and paperwork. His face was so sadly expressive he almost didn’t need to say it.

Primary plasma cell leukemia. At first they thought it was multiple myeloma, but MM develops over years. This was a much more aggressive disease. Primary PCL is also rare, so there isn’t a lot of data about outcomes. 

Chemotherapy was not just recommended–it had the potential of immediately extending my life. The goal was to get the cancer reduced to zero (from 95%) in order to prepare my body for a stem cell transplant.

Cervical cancer was a bit of a wake-up call, but nothing like this.

Life Changes

Life changed dramatically for me and my family when I was diagnosed last year with plasma cell leukemia. The perspective I’ve contemplated for half my life–that situations are impermanent and unpredictable–came alive as a sanity-saver. I’ll be sharing parts of that story here, along with other brilliant stuff. 

Life is a TARDIS

For months–well, years, to be honest–I’ve been meaning to visit West 11th Street Park. I felt some kind of neighborly, good-citizen obligation to visit this park. Somehow my usual enthusiasm for urban parks became a compulsion in this case. I wanted to like it.

I have a strange passion for urban parks. I love the idea of connecting with nature in the midst of the city. Providing trees for a healthier atmosphere. Allowing just a little bit of signBannernature to have its own space. The natural world was here a long time before we showed up to pave it over.

The reason I took so long to check out this park is that it looks predictable from the outside. It’s on a square bit of land, a few blocks in length on each side. You can see two sides from each street corner; it takes just a minute to drive around it.

I’ve heard about the park for years. It seems like a noble gesture on the part of a handful of citizens to preserve this land and prevent development when property values are skyrocketing.

From the outside it appears like a mostly undeveloped, densely wooded park, but it’s mowed along the perimeter, so there’s plenty of oOLYMPUS DIGITAL CAMERApen space for throwing balls of various sorts, playing with dogs, having a picnic.

I must confess I’m often shy to walk by myself when people are around, even though my body craves exercise. I prefer nature hikes to speed walking, and I really love to walk and talk, especially with my husband, but he’s often not interested. Sometimes I feel self-conscious, and talk myself into staying in the car. I wonder if I’m somehow wrong, as I project onto imagined others their judgment of me: maybe the residents don’t like people parking along their street to visit the park. Or maybe I’m just easily, painfully embarrassed.

Earlier this week I walked into the park for the first time. Today was the second time. I was wrong. W. 11th Street Park is small on the outside, but it’s another world on the inside.

On the British TV series Doctor Who, the Doctor calls his time-traveling spaceship a TARDIS (short for Time And Relative Dimension in Space). You enter the spaceship by stepping into a British police box. A police box is not much larger than a phone booth, which we don’t see in Houston any more. Basically, it’s very small. Upon entering through the door of the police box, you discover the vast interior of a spaceship.

In that respect, I experienced W. 11th Street Park as a TARDIS. Entering it, you step into another world.DSC_1

You can enter from any of several gravel trails and smaller grassy trails around the square of woods. Once you’re inside, the trails crisscross each other so often that when it’s cloudy, like today, I temporarily lost my sense of direction. It’s densely wooded, and the trails curve around so much that you can’t see what’s around the corner. The dead trees are allowed to stay and decompose, to a great extent, in order to maintain that circle of life thing. Wildflowers and native trees thrive.

It’s apparent that the Friends of West 11th Street Park have worked hard for years to provide a rich urban-park experience. There’s even a cell phone tour with 18 stops.

The TARDIS park was active today. Because the sky was overcast, birds and small creatures came out of hiding. I startled a large pileated woodpecker–flashes of white when it spread its wings, and a vivid red head. (There are six species of woodpecker in the park.) I spotted two brown rabbits on opposite sides of the park who were surprised by my movement. (I didn’t expect brown rabbits. I’m sure readers will inform me they’re as common as possums in Houston, but I’m not sure I’ve ever seen them in the city before. In the middle of the day, no less.)

I practiced a bit of aimless wandering–walking without a goal, choosing which path to take without much thought, noticing thoughts and feelings without being directed by them. Listening, just listening, I heard distantDSC_10 knocking that drew my eyes upward. Way up, probably a hundred feet up, another woodpecker hammered its beak into the side of a dead pine tree. Its tail feathers, firmly bracing the bird against the tree for balance, supported the concussing percussion.

It’s a shame that I thought I could predict the experience of this “small” park.

I think it’s a common human failing that we need to make things small. Perhaps ego feels more important or substantial, or more in control. We shrink the world with assumptions and categories, contain it with concepts, and turn it into something completely predictable. We’re so quick to pass up opportunities based on first impressions.

This is the old “can’t judge a book by its cover” phenomenon. Does ego reduce the significance of an experience by labeling it with a cliché?

When we relax ego’s habit of drawing conclusions and dismissing possibilities, and we replace that mental overactivity with relaxed, open curiosity–the world gets bigger. Much bigger.

(Warning: Objects in mirror are more interesting than they appear.)

I’ve heard adults boast that they tell their kids, “Life is fascinating. If you think things are boring, you’re boring.” That always sounded mean to me, but I think the intention is a good one: to inspire kids, teens, young adults, to wake up to life. But there’s something missing in the delivery that defeats its own purpose.  It would be better to demonstrate what curiosity looks like. Show how you uniquely relish everything that life offers. Be what you would like them to become.

We often say that people are more interesting than they might first appear. We remind ourselves that, “Everyone is fighting a hard battle.” We say this referring to people we don’t know.ts

The funny thing is, we can also say this of the people we think we know best. I find it helpful to remind myself that my husband is greater than the sum of my conceptions about him.

Everyone is a TARDIS.

I can’t wait to get back to my park.

(Source of photos: http://www.west11thstreetpark.org/ and http://www.ask.com/wiki/TARDIS?o=2801&qsrc=999&ad=doubleDown&an=apn&ap=ask.com)