Living Well – Ongoing Adventures in Uncertainty

I suppose there are people who finish cancer treatment and put it behind them. They don’t make a fuss about it, just get on with their lives.  I imagine their philosophy is – ‘If  the horse throws you, pick yourself up, dust yourself off,  get back in the saddle and ride’.

Then there are people who say that cancer  has  transformed their lives for the better. When they get back in the saddle they find they are riding a unicorn that can fly. They make big changes, shed lifelong habits that don’t serve them, leave hurtful relationships,  start new careers, new families, launch foundations, write books, etc.

I don’t fit in either category.  Too often I find myself pre-grieving future regrets.  I sit in the pasture and each time the horse goes by I count lost opportunities, past and present, and feel how sad I will be when the inevitable day comes that I won’t be able to get back in any saddle.

I  thought that going through serious  cancer treatment would make me a braver person, more willing to take risks. If I survived that, why not do other things I have always been afraid of like sky diving or ocean kayaking or saying exactly what I think without worrying about how others will respond. I still have no desire to skydive, so I guess that doesn’t count. Ocean kayaking is more attractive  but even in calm water I’m  afraid of tipping over and getting stuck under the kayak. Speaking my truth? I can’t even decide how to answer my email.

If anything, I’ve become more timid.  Its as if I stored all my cowardice away just to get through treatment  and now if has come back in full force.  Crisis simplifies things for me. My priorities become clear. My survival is at stake and I know what to do. Dump me back into day to day decisions about regular life and I cringe before my calendar, my refrigerator, my clothes closet, and especially, the blank page.

Many of the mainstream stories about people with cancer are about the innocent and/or brave victims or brave survivors. What about the cowardly or guilty victims and cowardly survivors? As soon as you slap the label ‘brave’ on someone, you imply that there are others who are cowards. Innocent implies that there are those who are guilty. Does the person who smokes regularly for twenty years deserve to get cancer?  What about another person who smokes the same amount and lives to a ripe old age cancer free?

If I think too much about finding the right words, I wind up thinking myself into silence. I dream of writing about beautiful night-mares who can’t be ridden but are essential to living.

***

It was a sunny beautiful Gay Pride day in San Francisco, a day for celebration.  I’m all for anything that promotes loving relationships. I’m glad that more same sex couples can choose to be married and that the federal government will give them benefits. I hope they will change the institution of marriage more than it changes their relationships. Personally, I’m not a fan of marriage because it creates a distinction between legitimate and illegitimate children and I don’t like that it encourages people to  think or say “Well, if you really loved me, you’d marry me.”

***

My daughter Sia and I flying to Norway in  mid- July. I  hope to travel blog about our adventures.

Our clocks leapt ahead a few days ago and shifted daylight to make twilight seem longer. Since I sat down this morning to figure out what to write the Catholics have chosen a new pope  Time is whizzing by. Already, it is very old news that Banana Joe won the Westminster dog show exactly one year after I started chemotherapy and watched a Pekinese take the top prize on the tv in my hospital room.   Now,  I can’t really remember what my skull felt like when it was bald.

Questions of time, its simultaneous elasticity and unbending finitude perplex me.  A good friend died recently. I wrote the poem below the day before I heard that she was gone.

I first met Penny Montgomery over thirty years ago in San Francisco. I admired her chic style and wit and hoped some of it might rub off on me. She took her dreams seriously, and unlike many others, she put them to the test by leaving everything she’d known behind to make a new life in Montana. I loved receiving her vivid letters and our mutual love of language and stories was something that connected us over time.

Transit

Everything is on the brink
hesitation, soft horn
the fog is hanging on

Morning tea at the cafe
plum blossoms on the street corner
watching for the light to change
petals drift to pavement

Her voice answers the phone
but it is out of time
I’ve left two messages

What is the distance between being and non-being?

The blossoms are predictable
though  I never know exactly when they will appear
I call them cherry and plum interchangeably.
the small notch of difference, unimportant

Our brain cells are alive for some time
after our heart stops and breathing ceases 

When are we really gone?

when the voicemail message has been changed
when we are deleted from the contacts list
when photos are faded beyond recognition
when we are in no ones living memory
when humans are extinct

When the sun finally implodes will the stuff of us still be?

Alive, dying, dead
only one’s a steady state
or maybe not
I treat the first as if it is
as if my friends will be the same whenever I drop in
Even aging isn’t evident
We just pick up wherever we left off

What do I say to a dying friend?
“I love you,  call you next week”

We are conscious blossoms
petals of one season
One moment we shimmer
then pink dot on the sidewalk

“You’re scans are gorgeous, absolutely fabulous.” I was sitting in the exam room waiting for my oncologist who was running late, as usual, when he stuck his head in the door and gave me the best possible news. Then he disappeared to see the person waiting ahead of me. I don’t mind that he runs late because he is so compassionate and thorough when I do see him.

And more good news; my next scans are not until April.  The mental tether loosens a bit further. Tonight I’m going to see Cloud Atlas and enjoy a cappuccino It’s-It or two. I bought a box last night in preparation for consolation or celebration.

According to http://www.definition-of.com/scanxiety the condition I am currently experienceing has a word to describe it: hyperscanxiety

Scanxiety: the tension which builds particularly amongst those who have or have had cancer as they move towards their regular check up scan, hyperscanxiety being the period as they await results!

I thought I had coined a new word ‘scanxiety’  but after consulting Google I quickly realized my hubris. Not only has the term been around at least as long as Google (over a decade), with 16, 400 entries, it has derivatives. Now I can say that my noodling around on the world wide web is healthy coping mechanism not just a great way to procrastinate.

I had my scans friday morning, no big deal.   I went to lunch with a good friend and we took a long walk from Ft. Mason along the marina towards the Golden Gate Bridge.  Driving home later I pulled over to answer a phone call and  saw that I had a message from my oncologists office. Why would they be calling me and so soon? My mind shot to the time they sent me to the hospital right after scans because they thought I had an infection. I wanted to think this was an appointment reminder but just knew it was something bad.  Adrenalin fueled daymares filled me. I needed to get home before facing the terrible news so I forced myself  to pay attention and got back on the road.   It was just a robo appointment reminder. I took a long bath.

My appointment is scheduled late this afternoon and I will know the results, clear, not clear, or indeterminate.  The doctors have known the results for a couple of days but I asked to get results at by appointment rather than by phone on purpose.  From past experience, I know that good news about test results generally comes more quickly than bad news. For me, there are few things worse than waiting for a call that doesn’t come and then trying to find out why. A couple days delay in  to hear good news is a small price to pay. If its bad news, the delay will be a blessing.

When I woke up this morning, I lingered in bed enjoying the quiet comfort of normalcy. Tomorrow morning could be very much the same. In that case, this morning will fade from my memory.  Or this morning could stand out in my memory as the last morning before troubles began again. It was worth savoring in any case.

The next chapter will begin soon and I won’t keep you in suspense much longer than me.

I have been traveling the last couple weeks, first to Utah, then a road trip to San Luis Obispo. I had wonderful visits with my daughter, then my son and his family. Before I left I made an appointment with a henna artist. I had been thinking about decorating my head ever since I lost my hair, but my head was very sensitive to cold.  I even wore caps when I slept. I kept thinking I will do it when it gets warmer or when I feel better. When I was finished with chemo I wasn’t ready to celebrate. My body had been untethered  from the IV pole but the rest of me still felt restrained, watchful; could it really be over?  Taking these trips helped me to extend my range and to recognize that my well being is slowly returning.   The snake coiled on my head is a symbol of the strong medicine that has gotten me through to this point.

I showed Darcy Vasudev at the Henna Lounge  my drawing of a snake from my journal and she drew it freehand on my head with henna paste. It took her just over an hour and it felt like a tiny massage as she moved her pen-like applicator over my head and we chatted.  When she was finished she took the first photo. I went home and peeled off the dry paste before I went to bed. The pattern was very light and I worried that I hadn’t left the henna on long enough even though Darcy told me it would darken over the next few days.

Here is a photo almost two weeks later. I have gotten so many positive responses. My daughter and her college friends love it. I was a little worried going to Utah that I might be mistaken for strange cult member, but that just shows my bay area prejudice. I got into a conversation with a business man who sat next to me on the plane and it turns out he has a son who was treated for leukemia five years ago.  After the plane landed, he was far ahead of me in the departing crowd  and he turned back and walked over and gave me a big hug.

Its been hot in San Francisco the last couple days so I have been able to show off my pate art here. Its been fun to stand out in the crowd but I’m ready to blend back into my usual camouflage as snake fades over the next couple weeks and my head shows a five o’clock shadow as it prepares to be covered with hair.

Here is something I wrote a couple of years ago before my latest run in with cancer about what the snake means to me.

4/27/10 – Ten years ago today, I was hiking alone in Big Sur when I heard a noise and something dropped on the trail right at my feet. I looked down and saw a gopher snake with a mole protruding from it’s mouth, fallen from the steep side of the trail. I was so fascinated that I watched the snake for several minutes as she worked hard swallowing the mole. I felt protective towards the snake and hoped she would finish her meal undisturbed. Finally, I continued on my walk, musing on the accidental universe that had allowed me, the hungry snake and the unfortunate mole to converge in that spot at just that time.

When I returned to San Francisco I got news that my brother-in-law, Fred, had died unexpectedly of a ruptured aortic aneurysm the day after my encounter with the snake. My sister. Karen, had died eight months earlier of melanoma and I was suddenly guardian of my six year old niece Sia. I thought often of that snake in the months that followed as I struggled with grief for the loss of my sister, brother-in-law and my life as I had known it, I felt great anger and resentment at being left with with the huge burden of caring for my orphaned niece who needed so much love just at the time when my heart had retreated into a shell.

My memory of the snake gave me hope that I would eventually come through for myself and for Sia, not because of any special strengths or qualities I possessed but because digestion is such a basic function. I hoped I too could eventually assimilate the tragedy that felt like it had lodged in my gullet and even draw nourishment from it.

Five years later I was diagnosed with rectal cancer, probably just a random co-incidence, but the meaning I chose to make of it was that I still had some digestive healing to do. That mysterious healing work continues to unfold.

This blue moon day marks the end of my active treatment phase and the beginning of whatever comes next. May it be many blue moons  or never before I have to face cancer treatment decisions again. I have been out of the hospital for nine days but it seems so much longer.

A few days after I got home I received a middle of the night phone call from my daughter, Sia, who was in an ER  far away. She had become suddenly and violently ill and her dorm mate took her to the hospital. Luckily, her illness subsided after some hours and she was well enough to be released the next afternoon.  She went back to her classes and college life by the middle of the week  She was attacked by some unidentified intestinal virus or bacterium.  A sleepless night for us both and yet another reminder of how much we take for granted and how quickly things can change.

My temperature started to rise Monday afternoon, this was not unexpected. It’s happened around the same time after each round of chemo. Still, I had to wait a few hours to see how high it would go and activate my on-call friends in case I needed to go to the hospital. This time it leveled out around 101 and didn’t do more than make me feel crummy for a few days.  During this laid low time I listened to all three nights of the republican convention speeches on the radio.  Being sick helped me to find their coded use and abuse of the English and yes, Spanish language, on the whole more absurd than enraging.  I couldn’t help imagining the whole thing as a marionette show with the Koch brothers and their cronies pulling all the strings.   The oddest line, to my ears, came near the end of Romney’s speech last night.

“President Obama promised to begin to slow the rise of the oceans and heal the planet. MY promise…is to help you and your family.”

To be charitable, I think this was his attempt to poke fun at Obama’s grandiosity. But it was chilling to me when I heard it.   More so because it was the only direct reference to environmental issues that I heard in any speeches.  Do the families he pledges to help live on some other planet where the rising oceans and environmental damage will not directly affect them?

If you can’t tell already, I’m a democrat and Obama supporter. I don’t expect our convention next week will be any less ridiculous but I will probably be a little blinder to its faults.

My temperature is now back to normal. My main lingering side effect is fatigue. I am taking things very slow and savoring my days of recovery. The naked pink ladies, amaryllis belladonna, are in full bloom along the coast.

I’m writing to you from the 14th floor of Long Hospital where I can see the tops of the Eucalyptus trees and the fog blowing in and out though my window. It is such a luxury to have a private room after sharing for the last three rounds.

Yes, I decided to do one last round of chemo and I can’t even blame the oncologist. He left the decision totally up to me, as there is no medical evidence that  5 is better than 4, or that the max, 6 is better than 5. So for reasons rational and superstitious, 5 feels right to me.

I was nervous for few days before coming in, but now, tethered to my IV pole, with one day of chemo under my belt, I am feeling relaxed, drowsy and a little loopy.  An example of my brain on chemo: After my premeds and first dose, I was about to eat a turkey sandwich when I noticed that the green white stem was left in my tomato slice.  Without much deliberation I began to outline the stem part with my thumbnail and said to myself, I will do a punch biopsy on my tomato slice.

If all goes  smoothly I should be back home around next Wednesday. Below is something I wrote to a group of friends from my trip to Lake Tahoe a couple weeks ago. This trip was the best preparation for making my decision to do more chemo.

August 1

I am writing to you from the mountains near Donner summit with almost full moon bright in the eastern sky. I’m having a wonderful and unexpected vacation with my daughter Sia. Today we went swimming in Lake Tahoe and Sunday, we went on a hike called the Mt Judah looplocated on a beautiful part of the Pacific Crest trail. I wasn’t sure I’d be up for it but I felt good and it was great to visit familiar flowers and vistas from past hikes. If things had gone according to my plans I would be home now having just completed my fifth round of chemo and not in the mood for swimming or hiking.

The last time I wrote to you I was in the hospital after emergency
surgery for a small bowel obstruction. Once I got home my physical
recovery proceeded smoothly but I was badly shaken and profoundly
disappointed. I had been anticipating going to a poetry writing
retreat for months and delayed chemo treatment so I would be well
enough to attend. The obstruction developed the day before the
retreat. When I got home from the hospital all the things I had laid
out for packing in my happy preparations reminded me of what I missed

When it looked like I might recover quickly enough to go on this trip,
I tried not to get too excited. I was careful to say maybe when I
talked of my plans. I was cautious about what I ate. I planned to pack
the night before but superstition caused me to become very tired and I
fell asleep instead, getting up very early to pack just before I left.
I put a supply of leftover pain pills in my bag, thinking if I started
to get symptoms at least I could control the pain long enough to get
back to UCSF for treatment rather than go to the local hospital.

Since I’ve been here most of my worries have melted away in sunshine
and good company. We stopped for berry pie on the way here and I
haven’t stopped eating since. It is great to feel hungry again. I
keep surprising myself by being able to easily do things I thought
might be difficult. Knowing when caution is wise and when stretching
my boundaries a is healthful is still a difficult call for me to
make. I tend to error on the side of caution. That’s ok for now.  Who
really knows what’s around the next corner?

Summer is always a little odd for me living near the ocean in San Francisco. I judge how hot it is inland by the extent of the fog blanket when I wake up. I wear shorts and sandals if I leave town. I visit summer, I do not live in it. I like it this way.

This summer while recovering from chemo I have been reading and listening to friends accounts of their summer trips and adventures and feeling mostly content staying close to home, walking through the park to the shoreline. By early July I was starting to feel pretty good and getting excited about going to sunny San Rafael for a week of poetry writing, sun lounging and having all my meals prepared for me. My kind of vacation. I had to miss a similar opportunity last summer because of unexpected surgeries. I would come back rested, creatively stimulated, and breeze through my last round of chemo.

That was the plan. Instead, my plan and my gut took a twist. The day before I was supposed to leave, I felt abdominal cramps which got so bad I gladly went to the ER that night and had an emergency surgery the next day to unblock a small bowel obstruction. The good news is that the obstruction was not caused by cancer and none of my intestines were removed, just unkinked. The bad news is that the blockage was caused by scar tissue from my previous surgeries and radiation. I was in the hospital most of the week and missed the entire writing workshop.

Now I am almost two weeks out from surgery recovering well. Yes, I am tough, but how many times can my resilience be tested? I’m finding it hard to maintain an attitude of gratitude. Its more appealing to retreat to the universe of Terri for a major mope fest. Can’t I get a flicking break? Why me? Why now? Haven’t I been flicking good enough? All useless questions with no answers. I can’t even navel gaze effectively. My belly button was bisected by the latest incision and is currently not recognizable to me.

Yesterday, I heard about the shooting at the movie theater in Colorado. I am appalled but even sadder that I am not surprised that some lost young man would play out his fantasies in this gruesome way. He made plans. What about the plans of the movie goers? What were the people who were killed planning to do the next day? The fragility of plans and the goodness of life are all too present for me. I wish all those who survive resilience in their recovery.

I indulged in some online ambulance chasing; reading news stories filled with video, pictures, eyewitness accounts, twitter quotes, watching the sausage of disaster being transformed into narrative. Some stories will be healing, create connection, remain open ended. Some stories will be disjointed, discard what is contradictory, try to tie things up a neat knot, sort good from bad etc. They will be ultimately unsatisfying.

Today I sit with the no answers. I will keep telling stories to myself and others but I will try to keep them open ended, with room for surprise. I will keep making plans and I suspect I will keep getting reminders to hold my plans lightly.