Living Well – Ongoing Adventures in Uncertainty

chemo day 4, round 4

I met with my favorite oncologist last week and told him  I wanted to hurry up and get my, possibly, last round of chemotherapy over with so I could have time to recover and attend a poetry writing workshop in July. He wisely suggested that I take a break instead and go to the workshop before I do more chemo. He said that the good effects of doing something I love far outweigh any disadvantage in delaying treatment.

If he had said let’s go ahead and hurry up treatment, I would have been willing to push though the resistance of my body and mind because I so want this treatment to be over. Instead, he gently gave me permission to do what I already knew I wanted to do but wouldn’t admit to myself.

At this point in my journey, it is getting tricky to gauge my state of being. I just re- read what I’ve written in this blog and it’s hard to believe that I am the same person who has gone through the past year of surgeries, radiation and chemo. Maybe its a good sign that I am able to leave the past behind me.  It’s good to have this break, but my recovery is getting a little slower with each treatment and I have forgotten what normal feels like.

I’m having a difficult time staying in the moment and not projecting into the future. Active treatment brings its own sense of safety. It may be unpleasant, but it is also a time when I feel like I am in a partnership with my doctors and nurses doing something to prevent the cancer from coming back. Once the period of active treatment is over, the limbo of surveillance begins. I may feel OK, but periodically I will be scanned and tested for signs of recurrence. I will be in remission, the boogie cancer may be hiding under my bed just waiting for its chance to spring.  I will go back and read the work of the late, great Maurice Sendak to help me learn how to make peace with my monsters. Another great picture book that helps me reconcile myself to uncertainty is Paddle- to -the- Sea, by Holling Clancy Holling

Here is something I wrote when I began this blog:

The title of this blog “Living Well with Cancer” is aspirational.  Cancer is a disease, not a way of life. What does it mean to live well? Are the well and the ill two separate species? I think not, but sometimes I act as though they are. I seek reconciliation.

I still believe that cancer is a disease not a way of life, but I now have a greater appreciation of how cancer and  its treatment can seem like, and possibly become, a way of life. I also have a greater sense of how having cancer diagnosis separates people. I feared that losing my hair and looking like a cancer patient would cause others to treat me differently.  Besides a subtle shift towards more kindness from strangers, people don’t treat me  differently. I haven’t traveled outside San Francisco much and maybe people here are used to a wider variety of fashion statements, but I have decided my fears on this score were overblown.

What I didn’t count on was how much my behavior would change. I find that I don’t engage with others as freely. I spend much more time alone and when I do go out, I don’t make eye contact or smile at strangers the way I used to do. Especially when I am feeling low, I do what I call, ‘hiding in plain sight’. If I don’t look at them , maybe they won’t see me.

Another source of separation I’ve noticed comes from the cancer community. While it is true that nobody really gets it, like other people living with cancer and it is good for us to listen to and support each other; it also seems  there is a danger of setting ourselves apart of creating a separate ‘cancer culture’.  It is good to let off steam, to complain about  the stupid things that people say to us out of ignorance or fear.  There is also a danger  in overemphasizing our differences, we may further alienate those we want to maintain connections with.  All that really separates us is a diagnosis. I certainly remember many of the ignorant things I believed and said before I was initiated into the cancer club. Its a challenge to respond kindly to inappropriate remarks. It takes energy to engage in a constructive dialog. I am rationing my energy these days so I change the topic quickly or find a way to slip away.

Today is the first day of summer and longest day of the year. It is a clear day near the ocean here in San Francisco with plenty of time to take a walk through the park before the sun goes down.

I thought I would be past round four of chemotherapy by now, instead I am waiting for a bed to become available at the hospital so I can continue with the treatment that I am committed to continuing but would prefer to skip altogether. I have been doing a lot of waiting over the last couple weeks; waiting to feel better during an intense intestinal upset, waiting for the phone to ring with test results, and now waiting for a hospital bed. Of the three types of waiting, this is the easiest.  I am impatient to be done with treatment, but each day I don’t have to go to the hospital is a holiday that I wish could continue indefinitely.

All was going according to plan on May 12th. I was so happy to go to the Marin Human Race (Yay, fundraisers!) with Sia and our friend Stu. It felt good to walk with my Commonweal buddies and a couple of dog companions in honor of all our friends past and present.  We had a lovely dinner that night and  I was looking forward to a couple of fun days days with Sia before she left for her summer job and I went back to the hospital. My belly started cramping late that night and I didn’t get much sleep. Thank goodness for the resident on call. He convinced me that I probably didn’t have a bowel obstruction, more likely a 24 hour bug.

The 24 hours stretched into three days with little relief. On Monday I had a belly x-ray which showed nothing dangerous and a CT was ordered. Sia flew off that night, not the way we wanted to end the visit, but it made the good time we had even sweeter. I felt too sick to read, or watch, or even listen to anything.  All I could do was wait to feel better again. Finally by Thursday morning the worst passed and I was relieved and able to make it to the CT appointment thanks to another good friend who gave me a ride.

I started feeling much better and a new kind of waiting kicked in. I called the nurse who had advised me through the dregs of my illness and told him I wanted to know my CT results asap. He said sure no problem, he would call me.  He didn’t.   I had to wait a week to find out that the results were OK; no change at the tumor site since my last scans in October. I won’t go into the grisly details, but I got caught in the “Oh yes your scan results are ready, but everyone who is authorized to tell you the results is out of town dilemma”

Waiting to feel better is miserable but simple. Waiting for test results is miserable and complicated. For planned scans I try to set up an appointment a few days afterwards so I won’t have to wait for a phone call, but even that does’t always work.  The wormy thought that the real reason no one would tell me my results was because they were awful burrowed in and out of my consciousness over the weekend and early this week. My out of town oncologist gave one of his nurses permission to read me the report on Wednesday and that was reassuring, but the worm of mistrust is not gone. Maybe she didn’t read me the whole thing. I actually don’t want to read the whole report myself. I’ve come to the point in my treatment travels when I don’t want to know every little thing that may or may not be worrisome. I just want to trust my health care providers to be honest with me. Sometimes they seem to be following protocols that serve neither their interests nor mine.

I came through round three of chemo very well, if anything, it went more smoothly than round two. I was lucky enough to avoid the fevers that sent me to the ER after my first two rounds. When I saw my oncologist last week he was impressed  by how well I am handling the chemo.  He says I’m a beast because I come through each round so strong.

My daughter Sia arrived yesterday and we are having a grand time. I’m finally getting to hear all about her freshman year in Utah in colorful detail not possible in our text messages and short phone conversations.   I am so grateful to feel well enough to enjoy her company.  I tire easily, I’m fatigued most of the time whether I’m active or not, but we both like cat naps, and I can enjoy outings and meals with her.  Hard to believe that at this time last year she was still in high school and living at home and I had no idea what medical adventures lay ahead of me. This week is a fine oasis before I go back to the hospital for round four on May 15th the day after Sia flies back to Salt Lake City for her summer job and classes.

The other side effect I’m experiencing, besides fatigue, is a mental aversion to the hospital and everything associated with my stays there.  My nausea is mostly well controlled by drugs while I am there but this time, since I left, any thoughts about my stay or the food I ate there make me feel queasy. It’s nausea in hindsight and is diminishing as my last stay recedes but may swell up again as anticipatory nausea before my next round. If it does I won’t be shy about taking the drugs my oncologist recommends if the methods I’m using acupuncture , herbs and homeopathy don’t do the trick.

When I got home after this latest round of chemo I went into hiding. This was a practical strategy to avoid any human borne microbes while my blood counts were dropping, but I also experienced a deep urge toward solitude. I didn’t want to talk to anyone. Hearing my phone ring made me anxious. I didn’t want to return the call but I also didn’t want the caller to worry about me. What if I never wanted to re- engage with other people and decided to handle all correspondence by email?  What if my inner hermit given a chance at guilt free full expression enjoyed herself too much?

I believe this time around  I started using disconnection as a coping strategy while I was still in the hospital sharing a room and surrounded by nurses and doctors at all hours. It was a way to protect my privacy. I played the role of patient so I could cultivate the patience I would need to get though the long six days until release. The drugs aided the disconnection process but it still surprised me how long the disconnection lasted after the drugs stopped.

This turned out to be a temporary, but I think necessary phase.  I realized solitude fit my energy level. I noticed about a week and a half  after treatment stopped that I was starting to take an interest in my fellow humans again and even looked forward to communicating with them. My inner hermit has retreated to her cave until it is time for her to come out again and take care of me.   I’m learning that the  aftereffects of chemotherapy and hospital captivity are subtle, variable and hard to recognize until they have passed.

My roommate in the hospital was someone who was just diagnosed in January with two different types of leukemia and  she and her family were catapulted, literally overnight, into the weird and awful cancer world of long hospitalizations, tests and toxic treatments. When I was sharing a room with her she was in the first few days of preparing for a autologous stem cell transplant procedure.  She will be in  the hospital for a month or more and her own bone marrow along with her leukemia will be destroyed by chemotherapy before her own stem cells will be reintroduced and hopefully they will regenerate a healthy bone marrow and she will be cured.

So what do I remember most vividly about her? I remember a phone conversation she was having one evening with her tweenage daughter. They were on the phone for a long time discussing which sneakers her daughter should buy. They were both looking at the same website.

Should she get the yellow ones with the orange stripes? No, those were out of stock in her size. Wait, what about the ones with the blue stripes? No? How about those pink ones you showed me the other day?

I remember having long involved conversations with my daughter about similar dilemmas. This is the stuffing that fills our lives. This is the good stuff.

I’m writing to you from the hospital where I’m experiencing round three of a five day chemo regimen with Epirubicin and Ifosfomide to mop up any remaining sarcoma cells that could be loitering at the surgery site or planning scouting expeditions to new organs.

There are so many metaphors that describe battling cancer, killing the beast, winning the war. I feel differently about my relationship to cancer. I don’t feel it is some alien monster attacking me. I feel it is some living tissue that has arisen from my cells. For various reasons it has left the path of normal development growth and death and veered off on a quest for immortality. It is my own personal monster, or wayward child, or unwelcome relative. I, however, need it to die or at least stay very tiny, so I can live my full life span and gracefully accept my own mortality when the time comes.

The cancer is like some brilliant mad scientist off on streak mutating and reinventing itself to become the ultimate survivor, never considering that we are one, and if it kills me off, it too will die. We need to develop some kind of cohabitation agreement for our mutual benefit. I don’t know if this is possible and I don’t know how it is done.  I’m working to come up with words that fit how I feel about chemotherapy.

I’m curious about the experience of those who have lived a long time with cancer as a companion. How would you describe your relationship to your cancer? What metaphors work for you? How has your relationship shifted over time?

I’m certainly hoping that the scans I will have in a couple of months will show no evidence of disease. I also know that we all harbor cancer cells.  What it is keeps them relatively dormant and what causes the to go off on a wild rampage, or a slow inexorible march remains a mystery.

It is easier to be in the hospital than to anticipate being here. A couple days before I came in I had mild nightmares about some of the hospital procedures. The reality is unpleasant but familiar. Yes, I’m in captivity again, so I try to turn manuevering the IV pole into a dance. I’m learning not to drag it behind me or it will run into my ankles. Yes, it hurts when the fang needles punch through my skin and into my dual lumen port, but the pain is brief and the port allows the chemo to be given to me safely and I avoid all the other sticks in the middle of the night. The thing I miss most is the ability to walk outside, but as chemo fatigue kicks in, my desire to roam lessens. For all it’s bustle, the hospital is a sad place. It is hard to witness the unrelieved suffering of some of my fellow captives.  Outside,  it seems that all creation is busy mating, blooming and budding now. I find myself wanting to join in. I passed a tall attractive bald man tethered to an IV pole in the hospital corridor today and we both smiled.

Last, it is gratifying to see that the Cancer Help Program fundaraising is off to such a great start. You can learn more about it and make a  donation to sponsor me to walk in the Marin Human Race at: http://marinhumanrace.org/goto/terrimason

I seemed to have tolerated the first two rounds of in hospital chemotherapy about as well as anyone could have expected. It’s the week after chemo that has been unpredictably complicated. After round one I felt the chemical haze subsiding and was congratulating myself on feeling pretty damn good considering, when I developed sudden chills and my temperature started shooting up late on a friday afternoon. Oh no, I thought and waited a half hour or so hoping it would all go away before I called the oncology clinic and described my symptoms and the nurse said go the the emergency room as soon as you can.

Except for the shaking chills, I didn’t feel sick. I piled on layers of clothes, my new wooly hat ,  I’d bought in preparation for losing my hair,  wrapped myself in a blanket and sat holding a mug of warm tea in the passenger street while my good friend Stu drove us through the park to the hospital.

Even though I knew that fevers after chemo could be bad news and had pictures of myself in septic shock on an ICU bed of tubes, hovering in the corner my mind, I had this strange sense of well being visit me in the car. I just knew I would be ok even though i had no idea what was going on. I’ve never been to an ER except for getting stitches. I waddled up to the window holding my tea and as soon as they heard I was an oncology patient, they popped a protective mask over my face and whisked me back to a private area for immediate triage. Its an odd VIP status but I’m glad it saved me from having to hang out with Mr. ‘bedbugs’ who I later passed in the hallway on my way to the bathroom. Nurses checked my vitals,  took some blood and wrapped me in warm blankets. After an hour or two I finally felt warm enough and stopped shivering. My temperature was over 103.  I had no other symptoms of infection  but the crucial component of my white blood cells, neutrophils, was very low so I was declared neutropenic and put on strong IV antibiotics admitted to the hospital for two days until my counts rose to a safe level.

They never did find any sign of infection and I discussed ways to avoid being hospitalized again with my oncologist. Once I got home I bounced back well and enjoyed a couple of day trips to Santa Cruz and Bolinas before It was time to go back to the hospital for round two.

This time I had to share a room, something nobody going through chemo should have to do, but my roommates were decent and the nurses and doctors were great. Wearing my own clothes rather than hospital gowns made a big difference and knowing what to expect helped too. I  became somewhat graceful at maneuvering  my IV pole around and taking advantage of its battery life to stay unplugged from the wall as long as possible. It was such a great relief to get untethered on the sixth day and go to my quiet unmonitored home where no one woke me up at night.

I had been home from the hospital just over a day after the second round, when I developed a dry cough and a fever that proved to be the first signs of pneumonia. I stayed at home for four days because I dreaded being put in the hospital again and I kept hoping it was just a very bad cold.  After four days when my oncologist said go I finally went to the ER.  Antibiotics prescribed by the ER doctors ended the fevers and because my blood counts were OK, they let me go home rather than admitting me to the hospital. But this time I didn’t bounce back. I felt physically and emotionally depleted. I just wanted to hibernate and felt disconnected from myself and others. Even when I did spend time with friends or attempted to write I felt i was just going through the motions.   I requested an extra week from my oncologist when I visited him yesterday and he agreed that i won’t go back before April 16 for round three of chemo. Maybe by then I will remember why I think this treatment is the right thing for me. He assures me that in spite of the fevers I am tolerating treatment well and he thinks I am quite resilient. He also gives me a big hug when he sees me which is the best medicine.

I find myself thinking, maybe I can reframe disconnection as non- attachment. But i think non- attachment is different.  I think non-attachment has flow. I imagine it means feeling everything but letting it flow through like water in a river. Ah, there is delight and now its gone. There is fear and now its gone. Disconnection seems more like a log jam.  A snag in the flow. The odd thing is that the harder I try to push the snag or jam the more it resists. i just have to accept being stuck- accept that it is also temporary and wait for things to start flowing again. Relaxing helps.

I think finally posting an update is a sign that I’m feeling better.  This in and out of the hospital life is  very strange and I have a hard time finding words to describe my experience.

I dreaded losing my hair. It was my cover allowing me to pass in the land of the well.  To my surprise, over the last couple days when I actively started to shed,  I found myself curious and excited about the process rather than dismayed.  It helps that I’m feeling so well. If I was sick, I would probably look on it as another sign of physical disintegration. Instead I feel like a kid   with my beloved chemistry set mixing different powders and liquids together, heating them over the bunsen burner and waiting to see them transform.

Asking someone, What does it feel like to lose your hair due to chemotherapy?, could be considered rude, so I will share in hopes of adding to the public knowledge base like a good librarian.

It started while a was receiving chemo infusions in the hospital. A few times my scalp became itchy and I indulged in guilty bouts of scratching, but the itching passed and my hair stayed firmly attached. I had been told that my hair would start falling out two to four weeks after I started chemo so I really wasn’t expecting anything yet. I oscillated between hoping I would be one of the few who didn’t lose my hair and worrying that not losing it could be a sign that the chemo wasn’t  killing the cancer cells.

After I got home I noticed that my scalp began to be tender and sore.  I would tug on my hair gently to test it and a few strands would release but nothing unusual.  I noticed how good my latest short haircut looked and started to wear hats outside more often, to protect my self from sun and to practice. This Monday, I noticed some increased shedding but nothing bothersome.

Then on Tuesday morning, exactly two weeks after starting chemo, my hair started coming out in clumps when I did the tug test. Intrigued, I tugged some more and it kept releasing.  I didn’t know it, but it would be my last day with hair. It was a busy day so I limited myself to five minute sessions of hair tugging in between activities. I’ve always liked having my hair pulled. It feels like massage rather than being painful to me, but I did become a bit obsessed.  When I left the house in the afternoon I had a tiny bald spot near my part. I did a tiny comb over and laughed.

When I returned late in the evening, I indulged in some satisfying hair tugging before brushing my teeth. When I looked in the mirror I now had a very big bald line right down the middle of my head. No going back now.  I turned off the lights and went to bed.

Wednesday, I stayed close to home. I went on an early morning walk down Ocean beach. When I returned to my car I started to pull off my cap before remembering that my patchy scalp now resembled a dog with mange. If I had an electric razor I would have shaved my head.   By afternoon, I had just straggly fuzz and went out to the Mt Zion Friend to Friend shop where I bought two soft new caps and signed up for a makeup session. Walking outside I felt newly vulnerable, unprotected in some way as if my cap could be whisked off at any moment.  At home, I drew my curtains in case my neighbors walked by.

Today I like the shape of my head. My skull is bumpier than I imagined. I will borrow a razor soon.  I wonder if I can henna my earlobes or maybe even my head.  I suspect I’ll mostly wear hats in public but who knows how I’ll feel tomorrow.

Here are two sources I found helpful in understanding chemotherapy induced hair loss : Why Does Chemotherapy Affect Hair Follicles?- eHow

Molecular Mechanisms of Chemotherapy-Induced Hair Loss –  for techies

It’s been so nice to be home the last few days. I walked a few blocks into the park this morning and it already feels like late spring. The first round of chemo went smoothly. While I’m having some minor discomforts that I didn’t expect, eating, sleeping and walking are pleasures I can easily indulge in. I definitely don’t feel normal but I don’t feel sick either. My mind searches for easy categories to describe my experience and finds none.

I wrote this in the hospital:

Strong Medicine

When they tell me to do my laundry separately,
because chemicals will leak out in my clothes,
I know I am taking strong medicine.

I think of  my copal wood snake with the lump
in her middle. She reminds me that anything can
be swallowed and transformed.

Normal shifts along a spectrum of extremes. An IV
pole has become my constant companion,  portable asp
tethered to my breast by two needle fangs.

One drug rubies, toxic to the heart.
The other, clear silent, discovered at war
kills tumors along with their soldiers.

Both seep into my blood as I watch TV,
eat dinner, walk through the halls.
Yet all feels safely familiar

This journey I am taking that will not repeat again.

So far, so good.  I feel more drugged and groggy this morning , but better now that I’ve been eating and walking around. I’ve become very aware of my basic bodily functions since I am asked about them several times of day. I most wanted to avoid nausea and weight loss and because of the good drugs they are giving me and all the fluids they are pumping in to protect  my bladder , I have gained a few pounds.

The food is pretty good. Just a couple weeks ago they implemented a room service  system for the oncology unit.  I can call in requests between certain hours for any foods from the menu. Breakfast all day if I want it. They seem to have discovered spices  since last time I was here.   It is a big improvement over the old system with fixed meal times no matter whether you are hungry or not. They have salmon a couple times a week but it is way overcooked. The portobello veggie burger with  julienned roasted  vegetables I had last night was very tasty.  Nothing I would make a reservation for, but I’ve been pleasantly surprised

It’s good to have chemo finally under way.  I chose to come in Monday night, rather than take my chances on losing the bed and being delayed another few days.  I slept only about 4 hours the first night and was antsty and anxious the next day recieving mixed signals about when the chemo would  start and whether or not I would be bumped to another room because of an incoming transplant patient. The patient didn’t come and they hooked up my first bag or ruby colored Epirubicin about 5:30 pm for an hour infusion followed by a three hour infusion of ifosfamide.

It was all very anti- climatic, no dramatic adverse reactions, no eyes rolling back into my head and falling into a coma, no feeling like I was hit by a ton of bricks.  Just a  weird taste in my mouth from the premeds,probably the decadron, a mild flushing sensation in my face and ears , and soon a drowsy goofiness from the Ativan.  I took a walk to the solarium to watch the sunset then returned to my room and dozed on and off watching the Westminster Dog show. I like the terriers and I was quite disappointed to wake to see the fur ball with wet eyes Pekingese winning Best in Show.

I haven’t gone into the hospital yet to start chemo. I have been tolerating my not-chemotherapy pretty well. It’s good to have a hearty appetite,  go for long walks, sleep in my own bed, and check off items on my infinite to- do list list.  Calling in each day to find out where I will be sleeping, is not so much fun, but each day’s reprieve, makes me grateful for the small pleasures I often take for granted.

Now that too is changing. I just got a call and I’m  scheduled to go into the hospital tonight. The therapeutic denial that has gotten me through the last few days is crumbling. I really am going to start chemo and I’m not looking forward to it.

Last Wednesday, the first charge nurse I spoke to was apologetic about the waiting list for admission. She actually said, ‘ Think of it as waiting for a reservation at a fabulous restaurant.’ We both laughed, but I don’t think we were laughing about the same thing.

Later today, I will call the nurses at the hospital and ask if they have a bed available for me to begin chemotherapy. There are a limited number of beds available on the oncology floors.  They never know when someone will need one in a hurry or how long they will stay, so beds can’t be promised to people with less urgent needs. If there are no vacancies I will call back tomorrow.

I find myself surprised that uncertainty keeps popping up in places where I don’t expect it. This doesn’t throw me as much as it used to.  I realize it would be worse if the nurses had given me a definite date and time and then called at the last minute to postpone it.  At least this way I can plan for not knowing. I also planned to have several odds and ends taken care of, piles of paper sorted, house cleaned and organized,  friends visited, called or emailed before I go into the hospital, and thats not going to happen. I will always run out of time. Thats just the way it is.

I’m now a card carrying member of  two new clubs I didn’t want to join. One card, I am supposed to carry with me at all times, has information about my dual lumen chest port . This makes me a member of a club of humans who are slightly bionic, but our artificial components give us no cool powers like flight or clairvoyance.

The other is a member card for SPARC , a collective that runs a medical cannabis dispensary south of Market St. It exemplifies the transitional characteristics of the neighborhood; dot.com meets skid row. The menu of medicine available reads like a wine list. The staff is very young and clearly excited about their cause. There is a ‘vapor bar’ along one wall where patients can socialize as they inhale. They also offer meditation classes with or without cannabis enhancement.  At first, I found myself  asking where are the granny pot clubs for people like me, then I became warily charmed.  I brought home a little bag of blue dream and a pretty little blown glass water pipe (bought down the street at an even funkier place called ReLeaf).  I tucked these magic talismans away in a drawer. Just knowing they are available to me if I want them gives me comfort.

Here’s a poem I wrote when I woke up yesterday:

Kindly remove your shoes as you enter the forest.
Everyone here knows your name.
It’s not formal, just necessary.
Make yourself at home among the roots.
We’ve been waiting for you.

You were homeless in your parents house,
Jobless at work. What do you have to lose
besides everything you have known?
No questions of like or dislike here,
only deep engines without machines.

Come join us, we provide shelter
between rocks and hard places.
Here leaves lie down, become soil
Leave your worries on the doorstep
and dream a blue dream for time being.