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)

Eat it like it is

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Eat it like it is.

I don’t like onion bagels. I don’t ask for onion bagels. The poor barista seemed new, rushed, overwhelmed. He must have grabbed an onion bagel from the same tray that displayed my beautiful multigrain bagel in front. I didn’t realize it until I tore open the bag an hour later at my desk, ready for my second breakfast.

I don’t like them toasted, either. Why bother, when multigrain is so tasty, with just the right amount of cream cheese. But here I have a toasted onion bagel.

For a full minute I had to talk myself down from being on the verge of that cliff–frustration, criticism, blame. The morning ruined. I never would have expressed that sentiment to anyone, of course. It doesn’t fit the impression I would like people to have of me. I would’ve lied. But I would’ve allowed it to color my mood for the morning–already tinted by fitful sleep, my husband leaving town today with the kids while I’m anticipating/dreading a doctor appointment. I had already been lying, wearing the mask of okay-ness.

Life is an onion bagel, toasted. It’s perfectly prepared to shatter our masks, challenge ego’s desires, wake us up from self-centeredness, pop our balloon of narrow expectations and demands. Apparently, life wants us to be present for it, to be honest, to be open-hearted. That’s how I say I want to be. It’s a life-long journey.

Ram Dass used to quote a surly cook who refused to honor specific requests: “Eat it like it is.” That is my mantra for the day. Taste life, just as it is. Even if it doesn’t meet your requirements. Especially when it doesn’t. 

Remembering this, as I write, I humbly come back to the present. To my honestly shaky, uncertain existence, my genuinely soft heart. I am grateful to my dharmapala/protector of awareness: a toasted onion bagel. With cream cheese.

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How women make mistakes in marriage and what to do about it

How women make mistakes in marriage and what to do about it

The article in today’s Huffington Post on Divorce Causes: 6 Marriage Mistakes to Avoid is useful for summarizing some common landmines of marriage. It’s addressed to women in heterosexual relationships, but it’s probably pretty generalizable.

While the mistakes don’t have to lead to divorce, they certainly don’t make things any easier:

  1. badmouthing your husband to your girlfriends
  2. not knowing how to talk to men in marriage
  3. thinking your husband has to change in order for you to be happy
  4. living parallel lives, thus growing apart over time
  5. expecting the worst from your husband
  6. having a sense of entitlement

I found the article refreshing in thinking of my own 12-year-old marriage, which sometimes displays qualities of a clueless adolescent. I certainly have room for improvement. (Yes, even marriage and family therapists can have challenging relationships. If your therapist doesn’t admit to being imperfect, I would be concerned…) 

The advice to work on yourself is always timely: a mature relationship depends on your working on your own happiness, without neglecting the relationship.

A Return to Sanity

Basic Goodness Day
May 7

We want to live in a world of peace and goodness. We want a world where the highest values are tolerance, generosity, creativity, kindness, and fearlessness rather than self-absorption, aggression, and speed.

A single glance at today’s news will tell you that we are at a crossroads. But we still have time to create a good future.

Politics, strategies, wars, and religions have not solved our problems. An internal shift is required. On first glance, it may not sound like much but it actually has the power to change everything.

We all know—can feel—that there is an enormous collective longing for a world that operates on principles of sanity. But where to begin?

All you have to do is know beyond doubt that you are good, that you possess inherent worth and value.

When you do, something extraordinary happens. You come into your power. Your confidence rises and your distrust lessens. Your world becomes full of possibility rather than hassles. You see that others also possess this goodness and your heart opens to them.

None of this means that we won’t have sorrow, rage, disappointment, and confusion. We will. But we discover a way to conquer them.

When we approach ourselves, others, and our world as basically good rather than basically bad, our actions, words, intentions, aspirations, gestures, energy—everything—change. This subtle shift in our state of mind can alter the environment we live in. It can actually change the world.

Each of us holds human destiny in our hands. It will be completely determined, not by what we think, but by how we feel. Do we want a world where everyone feels they are basically good, worthy, and kind? I believe we do.

We invite you to join the effort to declare the truth of goodness and reaffirm our collective belief in ourselves, our fellow humans, and our world.

We declare May 7, 2013 to be Basic Goodness Day, a day when people all over the world, no matter what their beliefs, religion, culture, or creed, collectively affirm their own and others’ basic goodness.

We can celebrate this in any way we like.

If you are a parent, you could say or do something to affirm the goodness of your children and let them know they are worthy of love and kindness, no matter what.

If you are a boss, you could communicate this to your employees.

If you are a doctor, you could communicate it to your patients and if you are a patient, you could communicate it to your doctor.

Teachers can affirm this truth to their students and students could do so for their friends.

Such affirmations can come in the form of words, actions,or by simply thinking of another person and feeling kindness in your heart toward them, whether you speak it or not. Basic Goodness Day is about bringing out the natural tendency of your heart to open, express, and give. You can offer something to everyone you encounter on this day.

If you are a blogger, you have a special opportunity to share the love on Basic Goodness Day. Bloggers are now the trusted messengers of our world. They are the voices we trust, beyond pundits, experts, and officials of any stripe. Let’s use our voices to summon the good. You’re smart.You can figure out how to do this, but here are a few suggestions, just in case:

Blog about your thoughts on the idea of basic goodness.

Tell your readers what you love about them.

Offer 5 suggestions for ways your readers could express their basic goodness on this day.

Tell a story about a time you recognized the truth of basic goodness and/or solicit such stories from your audience.

Give something away.

Ask for something.

Take delight in the display.

The Basic Goodness Manifesto:

I trust in my own and others’ goodness.

I know that caring changes everything.

I trust my heart.

I trust you.

Sweeten the World Up

What we do, for good or ill, sends ripple effects through the lives of those around us and beyond. Our jealousies, small-mindedness, and insecurities affect our families, friends, and coworkers. So do our integrity, confidence, cheerfulness, and generosity.

Doesn’t it make sense that working on ourselves can improve the state of our sweet old world? Doesn’t it make sense that it’s the best starting point?

This is a quote from renowned meditation master Chogyam Trungpa.

There are many international problems, and throughout the world chaos is taking place all the time — which is obviously far from the expression of enlightened society. In the past, various disciplines or faiths, such as Christianity, Judaism, Hinduism, Islam, Buddhism, had great dignity. There were extraordinarily sane people among the ancients who worked to make the world worthwhile and passed down their wisdom generation by generation. But there has been a problem of corruption. The world has been seduced by physical materialism as well as by psychological materialism, let alone spiritual materialism! The world is beginning to turn sour.

Our measures may be small at this point, but we’re trying to sweeten the world up. In the long run, we want to offer something beyond a token. We want to make a real contribution to the development of enlightened society. That begins right here. As they say, charity begins at home.

From “Working with Early Morning Depression,” in GREAT EASTERN SUN: THE WISDOM OF SHAMBHALA, by Chogyam Trungpa, pages 26 to 27. Sign up for Ocean of Dharma Quotes of the Week.