In Our Own Words

Summer Into Fall

Julie - I spent my summer growing along with all of the plants in the garden. After a long, cold, heartbreaking winter of tears and disappointments; a winter that had followed a long three seasons of fear, strength, weakness, loss, and change, my soul took over to rummage in the ground, to make projects happen, to reach goals, to have something tangible and good to see, to smell, to taste.

It started in the garden. I dug for days to create a perfect 3x20x2 foot trench, called the compost man, and planted raspberries. I dug six deep holes to the spring and watched them fill with water around my shovel. I placed new blueberry bushes in the wet, picked plants promising sweet, promising tart, promising pies. I turned over the garden, planted tomatoes started at seed by the woodstove. Every day I brought home more annuals like an obsession.

It continued in my body. Recovery over, it was time to get even better, stronger, fitter. I moved forward to a date circled on the calendar via the gym where I lifted weights, bicycled, elipticalled.  Loved the process of muscle and well-being. I trained hard in class only to sprain an ankle on a good move that proved I’d come toward reaching my goals. The day of the test came two days off crutches with tape and a brace and determination. It was good and the tangible is there.

And in my soul I became tougher, braver, more like the way people see me. I have more true humor on the day to day, more true compassion and patience on the day to day. I know myself, my ever changing, ever challenged self better and better on the day to day to day.

Friends: As you can see in this piece this has been a year of healing - both physically and emotionally. There were lots of decisions to make coming up to this fall. One of the biggest was professional. Last winter I applied to the PhD program in nursing at my local university and was accepted. At the same time I applied for a job. It took them months to offer it to me and in the meantime I got a call from a former employer asking me if I would work for him again. I was really torn about what to do and just kept hoping it would all make sense by the time a decision would need to be made.

That's exactly what happened and now I am working three days with my former employer doing diabetes work and one day in the endocrine job where I've been doing osteoporosis, and metabolic work.  I'm very happy with my decision. And a month ago I tested for my Black Belt in Tae Kwon Do - a goal and a community that really helped me to get through cancer treatment. This fall has really marked an end to a chapter.  Thanks for reading.

People Do Exercise!

Julie - I joined a gym.  It’s probably been close to 10 years since I’ve been in a gym but I’d been thinking about it as I train for my upcoming black belt test in Tae Kwon Do.  And then I went and injured my foot, which keeps me from practicing or walking, and I needed more exercise without stressing my probably stress-fractured foot.  Since my physical therapist has been encouraging me to do more strengthening I’m doing Nautilus and I’m riding a recumbent bicycle for foot sparing cardio.

Back when I was doing primary care work in the town that the gym is located this place was generally known as the one that the overweight, the out of shape, the shy, and the old didn’t want to go to.  “That place is filled with skinny girls in spandex and muscle men.  I’m not going there.”  So, the other day while I was riding the bicycle I was watching the Nautilus area (it’s all computerized now, did you know that?) and I was struck by the people I saw.  Only one of them was a late 20’s skinny girl in spandex and only one of them was a muscle guy well into his 40’s.  The rest of them were older and a bit baggy in all the places that get baggy, or were young and fluffy in the way that the young carry extra weight.  Some were normal weight with a ring around the middle like me and some had some years on them and looked like they had maintained pretty good fitness.

I was so happy to see these people in a gym.  Not only did it make me feel more comfortable being there with all my current disabilities, but it made me feel better about my patients.  Because there they were.  Not my actual patients but people just like them.  All my young women with PCOS, people with diabetes, women with osteoporosis.  Every single one of my patients gets a prescription for exercise.  Some of them do it.  Some of them, I fear, just tell me they do it.  Some of them just plain don’t.  Some days I wonder if anyone does anything but go from sedentary job to television to bed.  But now I know that they do.  I’ll just bet that a lot of the folks I see at the gym have a healthcare provider that asks them about exercise at every visit.  And they honestly say, “I spend about an hour at the gym and I do nautilus and then I do the bicycle or the treadmill or the elliptical.” And I feel like vouching for them.

Thursday I saw one of my young women with PCOS.  She really isn’t much of an exerciser – sedentary job, grabs dinner at a fast food place, and goes home to TV.  She has a dog though and says that maybe once a week she takes the dog for a walk.  I went to the gym after work and on the way home I passed her – walking her dog! We’re always taught to talk to smokers at every visit about quitting smoking – that it really does eventually work for some people.  I think the same is true for exercise and now I feel a little less dread when I ask, “So whatcha doin’ for exercise these days?”

A Good Laugh

Julie - Part of my job requires teaching people how to give themselves injections.  I teach all sorts of people how to inject insulin with tiny needles attached to pen devices and they’re not usually very happy about it.

I also teach young people how to inject estrogen or testosterone – thick fluid through large bore needles that definitely hurt.  They are always excited and happy to do it.  They’ve spent their lives in the turmoil of feeling that they were born the wrong sex and finally they are transitioning. 

Mostly now I teach people how to inject a drug called Forteo to treat severe osteoporosis.  There’s usually some apprehension but they know it’s only for two years and they’re willing.

The other day Betty (as I’ll call her), a woman in her 70’s, was on my schedule for a Forteo start.  My colleague, her regular provider, dropped in with a warning.  Betty was in the waiting room with her daughter, her husband (“overbearing but a really nice guy”) and her sister, who is also taking Forteo but her daughter, a nurse practitioner, gives her shot due to vision problems.  I herded them all into the kitchen/conference room and started my routine.

These old ladies always amaze me at how well they pick up the 16-step process (that I teach as a two step process).  Betty was no different.  The family was interested and I did my usual attempt to focus mostly on Betty while the rest of the family asked questions and tried to help.  The only time Betty’s husband spoke was just when she was getting ready to do her real injection and he asked if she wanted him to do it for her.  Perhaps he was subdued by the presence of these four women in this small room.

Betty did great and then I set up her insulated travel case to keep her pen cool on her way home.  I said, “Here’s the pen in the ‘pen compartment’ and here are the cold packs on either side of it.”  Betty, who had gone through the whole 45 minutes without asking many questions looked at me quizzically.   “Kotex?”  I startled.  I could feel it coming up from my gut. “Cold packs.”  I smiled. Someone chuckled.  She said, “Oh, I couldn’t imagine why I would need Kotex with this!” and I laughed.  I thought, “Oh, I shouldn’t really be laughing” but I couldn’t help it and Betty’s sister and daughter were laughing and I felt my throat open up and loud, clean, mirthful laughing was coming from my deepest soul.

I heard it and I loved the sound of it reverberating in the room.  I knew that my boss and her patient in the next room could hear.  Probably people in the waiting room could hear.  It kept on, it was filled with the humor of the moment, laughing in the face of medicine and the treating of a disease that might or might not cause problems in the future.  It was filled with my own sense of relief and joy and love and letting loose and the realization that I hadn’t heard, hadn’t felt, that sound in a long time.

Anniversaries and Moving On

Julie - This has been a season of one-year anniversaries.  Feb 10 – ultrasound, “I’m looking at my cancer”; Feb 15 – the call, “It’s cancer;” March 2 – lumpectomy and axillary dissection, “There’s cancer in the sentinel node;” March 9 – post op visit and first oncology visit, “You need chemo and mastectomy;” March 17 – first chemo; March 18 – “Hey, mashed potatoes taste good!,” April Fools day – hair falling out.

At first I was disturbed by these constant thoughts.  It felt like some sort of strange obsession.  But I knew I couldn’t stop them and figured I’d just ride along with them.  Then I started to realize the pattern of my thoughts.  Each time one went by it was like another milestone.  I recognized that one, it was true, I had had breast cancer and I went through all of that; I was starting to see it a little from the outside.  Two, I saw that it was in the past – a year ago – and that I am living a different life this year.  And three, that I really did get through it: the diagnosis and the treatment and the depression and the aftermath.  And I got through it with a bit of a new attitude on life, though not totally changed for sure.

And I’m moving on.  One of the things I did last year was to lie on the couch wondering what I would do if I could ever get up again.  The idea that hung around my mind was going back to school for my PhD in Nursing.  So in January, in the midst of not believing in the future, I pulled an application together.  And now I’ve gotten an unofficial (don’t have the letter yet and haven’t taken the dreaded GREs) acceptance!

Of course during the months between then and now I asked myself a lot of questions. Do I want to go to school?  Do I want a better job with more hours and (gasp!) benefits?   Do I want to pick up and move to Brazil?  So, with my life motto of putting one foot in front of the other, I applied for a couple of jobs.  And now I will have to make choices or blend compromises.  Or something!

So it’s time to take what I may have learned last year and see if I can apply it now.  Wait for reality before making decisions.  Spend some time thinking about how I’d feel if I made one decision or another. Follow the path that feels right when I say it.  Move toward the path of living fully.  Give myself over to the decisions I do make.  Put one foot in front of the other.

My Dear Readers...

Julie - In my case it was cancer.  You’ve seen it before – in yourselves, loved ones, patients.  A crisis comes and explodes the center of a life.  It demands full attention.  It pulls a singular focus to itself.  Everything is reflected in its eyes.  It requires that every part of the life it invades change to accommodate it.  More, to mold to it.  Like a narcissistic parent, no move can be made without acquiescence to its possible reaction.

My world closed down, maybe more of an implosion than an explosion.  My small house, the couch, the comfy chair, three feet around the woodstove.  The oncology and surgical teams, the medicines.  My husband, my sister.  All the seasons of 6 Feet Under.  Other women undergoing the same thing.  The Internet.

The crisis drew in new energies.  The community of acquaintances who offered friendship, meals, shopping, prayers, books.  My need to discover the grace and confidence to accept these gifts.

Some pieces of life got pushed away by the power of the vortex.  Some things that were very important to me.  My horse.  Work.  Over time and insidiously, my relationships.  My newfound ease at accepting love and generosity became over-ridden by my old ingrained patterns of guilt, fairness, and independence.

I’ve finished now with cancer treatment.  And I stand now in a messy and changed place.  There are lots of pieces to pick up.  There are many question marks on many doors.  I am healing relationships with my family and friends.  I need to re-approach my work with the questions of “Am I on the right path?” “Where do I want to go?” And, almost most importantly, “How can I assure that I’ll have ongoing, affordable, comprehensive health insurance?”

So, my friends, at this moment I’ll be backing off a bit from this blog.  I’ll still be writing, but less consistently.  At least for a time.  This blog, this relationship with all of you, is one of the good things that cancer brought to me.  We’ll keep it going, redefined for now.

Relief, Redux

Julie - Thanks to you all for your good wishes.  The collective energies worked!  The surgery went very well, at least from my perspective.  One minute I was listening to Peggy Huddleston’s tape, joking with the attending anesthesiologist and my husband; the nurse anesthestist pushed the Versed and there were a few blurry memories of the OR; and the next moment (only about 45 minutes later) I was in the recovery room listening to one of my favorite songs from 1 Giant Leap.

With hardly more than a couple of bandaids in the way I could see the more natural shape of my new breast implant in comparison with the expander.  I could lift my arm over my head without pain or impingement and that was a huge relief.  After a couple of hours of drowsy unsteadiness, imbibing on the requisite hospital apple juice and graham crackers, my husband deemed me ready to go home and we said our farewells with no intention to return.

Three days later I’m completely without pain and my energy is returning.  It’s blustery cold so I’m not going for the three mile walk I did the past two days.  I say now that my left breast looks like a 20 year old instead of a 13 year old.  I’m hoping it’ll droop down to at least 25 so that the 50 year old on the other side finds some company.

It’s over.  This is the end of a year’s journey with breast cancer.  It should be a huge relief.  And in some ways it is.  No more procedures or treatments.  No more decisions.  I have hair, albeit shorter and grayer.  I have a breast, albeit smaller and perkier.  I’m in excellent health.  But…. The big “but.”  Everything has changed.  For months I’ll be dealing with the most obvious of the ripples that this experience has caused in my life.  Everything feels up for grabs when I try to picture my life a year from now.  There’s no going back to how it was before and that’s ok but it’s unsettling at best, terrifying at times.

And, of course, there’s cancer.  There’s the expectation that it is gone.  I live with that.  But there’s also the MRI next month, and there are the endless stories of recurrences, metastases, second cancers and deaths.  Unsettling at best, terrifying at times.  I live with that too.

For this moment I celebrate my triumph and feel huge gratitude for all the people who have done it with me.  I focus my learning on how I handled myself in this crisis – discerning what I can take into the rest of my life and what I can learn to do better.  I plan, as I did over the past year, to follow a path in the direction I want to go – one foot in front of the other.

January 17: Surgery Again

Julie - It’s amazing still to me that I have been thrown so deeply into the medical world that, within 11 months, I’ve already had three surgeries, have been given some of the most powerful and toxic medications on the planet, and take medication every day.  And now I’m facing surgery again next week.  It’s time to exchange the tissue expander for the breast implant.  I anticipate it being relatively easy physically, compared to the other surgeries.  And certainly not as emotional as surgeries that involve pathology reports and subsequent treatment decisions.

It’s hard to get ready to go back to surgery. Over the past few months, I’ve spent a lot of time consciously trying not to think about medical procedures. I’ve been  escaping somewhat into a black hole of incubation, separating myself from myself and many of the people around me, as I recognize and evaluate changes and decisions.  The past few weeks I’ve been terribly stressed with a peripherally- (not health-) related crisis that has taken a toll on my energy, sleep, and nutrition.  I had some discussions with my husband and friends and made the decision to go ahead with the surgery as planned.  But I have my work cut out for me to prepare for Wednesday.

With each of my previous surgeries I’ve used Peggy Huddleston’s  Prepare for Surgery, Heal Faster techniques.  So yesterday I clicked my iPod over to her relaxation/healing CD.  “Find a comfortable position and close your eyes.”  I was stunned by the level of anxiety that resulted hearing those words again.  It’s been over five months since I listened to it in preparation for the mastectomy and it took me back to the time of diagnosis, surgeries with unknown outcomes, and chemotherapy treatments.  Within moments, though, I settled into the familiar routine of progressive relaxation and visualizations.  I will listen to it at least daily between now and Wednesday and it will be what I listen to as they wheel me into surgery and I get lost in the drugs of amnesia and anesthesia.

Ms Huddleston’s method involves many aspects of preparation and part of it includes calling in the support of friends and others.  So I’ll ask, again, for healing, safe, loving thoughts from everyone – including you.  Please send thoughts, energies and prayers to me on January 17th at around 10 am Eastern time.  Thanks.  And I’ll let you know how it goes.

Sauna Night

Julie - At my home there is a tradition of "sauna night." Any time in the winter that a friend calls to say, "Sauna?" we do our best to clear the calendar and round up some others for a good sweat.

Last year was not much of a sauna year.  By the time sauna season rolled around we were deep into cancer world.  But last night we re-inaugurated the sauna at the request of a college-aged friend who is home for winter break.

Everyone knows their part and people come with bags of fruit and greens and bread.  We chat, cut up after-sauna fruit, and make soup while the wood-fired sauna heats up.  When it's declared time we take off our clothes and jewelry and grab yogurt containers of water and troop off across the grass or snow to the sauna.

The first rule of the sauna is "no politics in the sauna" -- a rule that has only been broken when our friend was home on vacation from his UN job in Baghdad.  Conversation always comes around to "How hot is it?", and our team for the international sauna competition, and who's going to fix the sauna door.  But it's mostly chat about life and quiet stretches of sweating and private thoughts.  When it gets too hot some go lie in the cold stream complete with shouts and screams, some just go outside and play in the snow, and I tend to move down to a crate on the floor near the stove where it's just a touch cooler.

After the sauna we come in, shower, and take our choice of about a dozen robes, many that have been donated for the cause.  We eat fruit as we put the finishing touches on Bob's squash soup -- always a little different, always good.  The second rule of the sauna is, "If you go home hungry it's your own darn fault!"

Before we eat we sit and hold hands around the kitchen table.  Relaxed, warm, clean, and cleared of stresses, we sit in silence and absorb the love of our friends.  Last night it felt particularly important to me.  The stresses of the past year have impacted the spirit of my husband and me as individuals and the spirit of our marriage.  It's been a tough time.  It felt so healing to bring extra love and hands and energy into our home and expand our circle.

Happy New Year

Julie - To everyone who has read this blog, to everyone who has written in, to my sisters with breast cancer, and to your friends and loved ones - I wish you a very happy new year.  We all fight for our lives and for our desires and goals every day.  Let's not be afraid to dream, to plan, and to make our dreams come true.

The Last Miracle for the Year

Julie - This is a season that I’ve never enjoyed much.  I didn’t grow up with any religious training or belief, but I’ve always appreciated the spiritual side to this convergence of holidays around the winter solstice.  In this dark time there are celebrations of light all around us.  From the Chanukah and Kwanzaa candles to the sublime and ridiculousness of Christmas lights.  Yet, like Charlie Brown, I’ve been turned off by the bombardment of commercialism.  And somewhat offended by the assumed Christian nature of it all.

In my household growing up we lit the Chanukah lights without ceremony.   We had a Christmas tree and on Christmas morning we had presents and a feast of bagels, lox, whitefish, and matzoh brie.  My husband and I, a no-longer Catholic and a never-was Jew, have developed our own traditions as many families do.  On Chanukah we light the candles naming each for a miracle.  For Christmas we go out behind our house and find an evergreen that could be spared within its forest home – too close to its neighbor, too much in the shade of larger trees to grow.  We thank it and its surroundings, cut it down, and bring it in.  We decorate it with the glass ornaments that we buy from our neighbor, the glass-blower, each year and with other decorations that are meaningful to us.  It’s sparse and beautiful.

This year I spent the first half of Chanukah with my family in California.  I shared our miracle tradition with them the first night and named it “family.”  As the week progressed I privately listed my own miracles – health, love, community, music, beauty, and friends.  The last day of Chanukah was a trying day for me and I am hard pressed to find a miracle, a gratitude, or a blessing to go with it.  In a few moments the sun will rise on the next day, the day after Chanukah.  The days are slowly, imperceptibly, growing longer now.  It was strength, determination, persistence that brought me through my health crisis this year: a strong sense of self that I don’t think I’d previously recognized I owned.  I guess that all that will bring me through this current crisis and every one to follow.  Maybe I’ll name the last miracle this year as opportunity.