Often, cancer is a crap shoot. It will be a while before medical science can always predict who will get cancer and who won’t. My cancer, plasma cell leukemia, is rare, and not much is understood about it. (Yes, I’m in complete remission, but this was my diagnosis not very long ago.)
But it’s silly to increase your risk for cancer. Here are some habits to think about. Taking small steps can add up to great results.
Photo Credit: DES Daughter Flickr via Compfight cc
Posted in cancer, Prevention, Self-care
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.
Posted in cancer, Self-care, Stem Cell Transplant
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.
Posted in cancer
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.
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.
Posted in Uncategorized
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.
I 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…
Posted in Uncategorized
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.
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.
Posted in Uncategorized
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.
Posted in Uncategorized
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.
