Category Archives: cancer

Impermanence and Complaint

“Allow your thoughts to come and go. Just don’t serve them tea.” (Suzuki Roshi)

I’ve been pretty sick with a cold–for almost four weeks now. Tests identified rhinovirus on July 17 and again (still!) on August 8. In the last couple of days I had a low-grade fever which was just enough to make me feel crappy.

I’m hopeful this morning. The Tylenol and Ibuprofen are keeping the temp down. I’ve started taking Augmentin (penicillin), which is usually not recommended without signs of a bacterial infection, but doctors are extra-careful with stem cell transplant patients, especially with fever. I’m starting to feel better.

This cold has been even more annoying because 2017 has so far been the year of viruses–rhinovirus, influenza, parainfluenza. I think the immunosuppressant I was taking for graft-versus-host disease (now resolved) increased my vulnerability to these things (no great leap of logic), so I stopped taking it.

When I feel good, I forget to appreciate how nice it is to feel good. When I’m very sick, I’m in the hospital–surrounded by experts, and usually I have a strong feeling (and motivation) that there’s a treatment that will make me better. In both those situations, feeling very good or very bad, I can forget or ignore the fact of impermanence.

When I have “just” a cold, but feel too crappy to do anything, I discover a sense of guilt if I don’t recover quickly. (That’s helpful, right? If you don’t feel well, there’s a mental trick to make you feel even worse.)

Feeling good doesn’t last long before it shifts. But who thinks like that?

Buddhists try to. It’s challenging to think about impermanence when everything in your life is going swimmingly. But that’s when we should be taming and training our minds, because we know things will change. It’s easier to train your mind when your body isn’t overwhelmed, to prepare for when it is.

Feeling bad is a clear message, a lesson, that feeling good doesn’t last. The medical rush to make it better can be a way to avoid awareness of impermanence. We’d rather not think about it.

My practice, I remind myself, is to simplify my inner commentary, calm my personal curmudgeon. (Seriously? Another virus?!) Stop complaining.

As I start feeling better, I challenge myself not to forget how sick I was, and to remember the countless others who are more sick than I. I challenge myself not to forget (or complain about) impermanence.

Impermanence is a profound teaching because it is a universal fact. It should become as familiar as our own name. We should never become complacent about it, or treat it as merely an idea or a philosophy.

The coffee that’s gone cold, our moods that can shift unexpectedly, last night’s elegant dinner that’s become a fading memory. People, too–friends, enemies, family, celebrities–we arise, dwell for a while, and move on. That’s how things are. It can be horribly painful when someone wonderful dies. Or a profound relief when an illness ends. Bad things fade away as well as good things.

We should experience impermanence, acknowledge it, feel it, open our hearts to it. Live in the full catastrophe. Be motivated by impermanence, inspired toward compassion and the path of awakening.

As we train our minds in this way, we realize that all we have is nowness.

P.S. Just to avoid any misunderstanding, I don’t advocate stopping medical or mental health treatment. Some people get the funny idea that meditation or Buddhism will heal everything and solve every problem. It won’t. 

Take loving care of your body and mind, as you would your own child. Maintain awareness of the preciousness of existence.

Things Fall Apart

Photograph of pelicans by Celeste Budwit-Hunter

When people ask what has helped me “stay positive” on my cancer journey, I should just quote Pema Chödrön. She summarizes the approach that has been the basis of my dharmic path for half my life. I would be miserable without it.

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” (from When Things Fall Apart: Heart Advice for Difficult Times by Pema Chödrön)

Maria Popova, brilliant writer of Brain Pickings, highlights these teachings in a recent blog post

The “letting there be room for all of this to happen” is an attitude and practice firmly grounded in the experience of meditation. Meditation is the foundation, in my experience and according to traditional teachings, for developing genuine openness, cheerfulness, and bravery.

Cancer Prevention

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

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.

Two Steps Forward… 

Sometimes I forget about my recovery. That might sound like a good thing. People might assume that I usually worry over my health, and that forgetting would mean “enjoying life.” But I don’t mean that at all. I’m not much of a worrier, and I strive to appreciate my life every day, just as it is. 

What I mean by forgetting is that I’m still in the old mental habit of assuming gradual improvement: If I do some exercise today I’ll be able to do the same or more tomorrow, or soon. If I feel good today,  I will feel the same or better tomorrow. 

Self-care in my situation requires remembering. It’s a daily effort of balancing activity and stillness. I may want to wash, dry, and put away two baskets of laundry, but my body will tell me when I need to take breaks, and when I’ve done enough for one day. 

It’s frustrating when I’ve had to re-wash a load of laundry because I ran out of energy after starting the wash cycle. After two days sitting wet, I’d wash it again! 

I should make plans tentatively, not assuming anything. But it’s so easy to get ahead of myself. I’ve told all my Facebook friends that I’ll be walking in the Houston Women’s March this Saturday. The march is at 11:00 a.m., the rally downtown in front of City Hall is at noon. 

I have a self-diagnosed sinus infection. I’m waiting to hear back from my Stem Cell Transplant team (my one-stop medical shop) on whether they’ll call in a prescription. I’m going to see them tomorrow anyway, so they will be waiting to see me in person. 

The blood tests I take tomorrow will tell me how anemic I am and how my kidneys are doing, among other things. There’s always a chance that my hemoglobin level has dropped again. In that case I’ll need another transfusion, which means I’ll be at Anderson all day. 

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. 

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.