Facing Chemo – A Personal Perspective

I was asked to write the below this week. Done, I am now attacking my work space, an intimidating task as I hoard EVERYTHING just in case it could be used in a future project. I want clean. I want work surfaces. But my evil twin brings home every tossed aside item I come across. This cleaning of the art space is a soulful negotiation between my two selves.

beloved clutter

So rather than write a new blog post, I share what I just wrote for something else, hoping it just might serve a purpose here.

Spilling out on to the floor!

warmly, marcy

Chemo: How I Faced It, Tips I Might Share – A Personal Perspective

A photo documents me beaming out as the very first chemo drip started. My long hair, a source of life long pride, was having a good hair day. A table was laden with healthy foods and drink. I look strong and hopeful. The truth is moments later I asked everyone to leave, turned off the lights and I lay there crying the slow, quiet tears of defeat that seemed to befit a younger stage IV ovarian cancer patient.

My six frontline chemotherapies were pretty standard. No real crises outside of the ongoing saga to find a willing vein. Oh, to have had the starting wisdom of a port! Eventually I got “plugged in”, infused and left, counting off one more chemo treatment until they were done, as was all my bodily hair, and I walked out to build a life in remission.

I approached frontline chemo as an endurance test. I rigorously took notes and followed them attentively. I started a “blackout period” free of all supplements and green tea the day prior to each infusion that lasted for the two days after infusion. A support team coordinated having food available and people to look in the days I would feel the sickliest. The days, in fact, when the last thing I wanted were visitors. They were assigned to bring a book and leave me be, that is if I didn’t head them off before arrival with assurances of just how fine I was. Compared to the horror stories of imagined chemo, I had more good days then bad albeit always weary in a newfound way. I walked every day. I ate well. I enrolled in a local clinic for immune deficient people that offered weekly treatments of acupuncture, shiatsu (Chinese massage), and access to a cancer-trained naturopath who assigned supplements that my Western team of medical experts then approved me to take. East met West courtesy of my body.

I was recovering from surgeries to my chest and abdomen and the news that I had one of the worst cancer diagnosis imaginable. Shock, grief and a raw primal fear I had never before experienced were daily components of my initial reality. The routines of chemo survival helped me by being concrete.

My husband and I moved in with friends in the city when it was obvious I faced a huge medical phase. This decision allowed us to under-function initially as friends took over being the competent leads. They told us what to do when. This allowed us space for walking through our emotions. Living with friends infused such a sober period with joy, love and laughter. I don’t know how we would have handled this same crisis at our beloved home in the woods but I suspect the increased isolation would not have served us well.

Four years later, I am a chemo pro. My port is a dear friend and I have different tactics for the different chemo regimes offered up. My life is good; I look healthy and bike or walk everywhere. I feel strong and hopeful most of the time. I have pride in a new head of hair even if shorter.

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Anniversaries

April is my cancer anniversary month. It marks when I bid goodbye to my intended life (so presumptuous!). Initially there was a huge divide between my life BC, before cancer, and WC, with cancer. I am four years into my new life and it more than not resembles my old. I have reclaimed meaning beyond my medical appointments. Cancer is not ALL I think about, instead it is a new nuisance much as my before cancer life was filled with nuisances.

I retain respect for the unending panic that subsumed me when informed I was terminally ill. I make room in my life to reach out to the newly diagnosed knowing the fear, as well as the power of role models – people living with cancer and people in treatment.

In August 2010 Christopher Hitchens shared the sentence that most resonated with me “…but now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” He never got a chance to rebuild with cancer as he died in frontline treatment.

I appreciate my years of living with cancer but I suspect I will never celebrate my cancerversary with any cockiness or zest. I walk on tiptoes, still, always, but content. I am here, I am here, I am here!

Below I share my first communication post diagnosis. I hope and suspect that I will never again experience such despair.

Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy, fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach heaves you awake just as you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped TRUTH.

I am re-born in this free fall. I am re-born to the council of my medical team, “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or, sometimes, several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My living quarters are reduced to a single room generously loaned by dear friends to allow me easy access to treatment. They shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.

Marcy Westerling
Oregon • June 10, 2010

Letting Go

Have you been swept up in the recent brouhahas debating how dying people should close out their lives – loudly versus quietly? Two doomed women have triggered voluble discussion in their separate determinations to live longer. They share being younger and skilled in amplifying their voice. Being loud has been a part of their strategy. They enjoyed full lives before and during their years with terminal cancer. One has since died, the other struggles mightily in a hospital.

The discussion has not been amongst the dying but rather largely amongst those still living lives of good health. Frankly, columnists needing to find a topic launched much of this with plain poor manners.

Andrea Sloan, typical of many advanced ovarian cancer patients, had no more FDA approved drugs to contain her cancer when her doctor indicated she was a molecular match for a new drug still in clinical trail. She couldn’t access the clinical trial so she organized a team, Andi’s Army, to petition the drug company via public outcry to grant ‘compassionate use’ of the drug. It was denied and she died within four months of her campaign start.

Lisa Sloan campaigning for access to drugs

Lisa Adams suggests no policy changes I know of, she just tweets and blogs her experiences as a lab rat for her cancer, saying yes to whatever seems plausible to keep her alive longer with her young family. She has quite a following indicating appeal.

Lisa (left) in the hospital with her doc

I am also rather loud in my living with cancer just as I was rather loud in my pre-cancer life. Whether astrologically flawed as an Aries or for some other reason, I share my reality and am persistent in my medical options. It is not wrong or right.

I watch another cancer sister move into the end zone with her disease. She is as contained as ever. She suffers quite a bit and understands there is no turning around where her cancer is heading. She is actively dying despite still being in treatment. Why, I wonder, have none of my local sisters chosen Death with Dignity, legal in Oregon. But I wonder to better inform my own choices not in judgment. When in my own dying process, let alone how, will I finally let go? Physical pain can be more tolerable than saying that final goodbye, I suspect. I think the terminally ill have few judgments about how to die, we are busy enough keeping our heads above water. Watch us or not but don’t judge.

There is a story about the Buddha being approached for counsel on the best way to handle news of one’s own approaching death. Buddha, apparently, began to flail around in deep, loud, uncomfortable hysteria for several long minutes. Observers had no idea what was happening. Just as suddenly Buddha sat back up, done with the outburst, and said, “There is no right way to die.”

I awoke this morning to an hour of Martin Luther King, Jr’s voice. His speeches are always humbling and inspiring. The hour closed with his final speech before being assassinated. In it he referred to being stabbed in the chest and the knife missing his aorta by the merest of slivers. Doctor’s noted, and the press repeated, that if he had sneezed prior to surgery the knife would have shifted enough to kill him. A little girl wrote in his favorite letter, “I am glad you didn’t sneeze.” May we all avoid a fatal sneeze today and feel gratitude for the choices we are allowed.

A Leader

Aging in Place

            The Center for Disease Control defines aging in place as “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” A lovely, simple notion with a growing fan base working to insure services and community spirit are there to allow such aging in place to happen.  Everyone benefits. I, though, define aging in place as waking up every night at 4 a.m. wracked by joints and muscles crying out for attention. There is no position that offers solace. I am in my early fifties. I used to look younger than my age, used to be in the top fitness level for my age, but now I am aging rapidly in place, courtesy of living on chemo.

            My last ct scan documented the necrosis nibbling away at my bones, most notably my hips. Chemo apparently interrupts the blood flow leading to bone loss. What I know is that I bend to pick things up as if I am imitating an old, old, old person. If I sit too long, I rise at an attention-attracting slowness, pulling myself up and then lurching stiffly the first ten steps until I start loosening up to resemble someone younger than 80. I cross the street with care knowing that I have but one speed; there is no spurt capability to rev me out of the path of an unexpected car. I used to be known for a different one speed. I zipped as if I saw a fire that needed to be contained. A favorite childhood photo shows me as a determined toddler, using speed, hands engaged, forward leaning, eyes focused, as I jettisoned my toy baby carriage to whatever captured my attention. I was always on a mission.

Marcy on the Move

            Ironically, as I return to chemo next week after a 55-day break from all treatment, I anticipate some lessening of joint discomfort. The cytoxan (one ingredient is mustard gas) is used in a pill form to treat arthritis. When I started it back in early June it miraculously cleared up my walking woes – I went from a woman needing a cane to a woman moving through life with relative ease. Perhaps that will happen again!? While I hope for some respite, I know that same recipe of cytoxan and avistan will further the cumulative damage to my body in its effort to keep cancer at bay. And, of course, the nausea will be back.

            I need to accept this body under siege as my own. I have been fast forwarded through an aging process courtesy of treatments. I look older but mainly I feel significantly older than my years now. The ct scans show that it is not an imagined feeling. The wear and tear is real. While I resent this, my form of acceptance has me seeking out the humor in it. There is much irony to be found.

            I, who fret not getting to live through old age, am having it delivered to me. It seems that really, middle age is what I may not experience. My entry into cancer world was an entry into senior world, cancer being a disease that disproportionately impacts older people. I am ‘retired’ despite my current age being labeled as “peak earning years” – another joke as I downsize text messaging out of my phone plan to save a few dollars. I join the daytime tai chi classes filled entirely with elders. Almost everywhere I go I am the youngest, often by far. My mother and I now face the same issues – burial plans, sleep time discomfort and movement challenges. But she is in her eighties. She is chronologically suited to this aging in place.

            An early on cancer pal, Val, since deceased at the age of 44, died looking so young and angelic – her wasting body resembling some innocent 10 year old. She was a filmmaker and poet who loved to get people’s stories out of them. She loved elders – the wisdom and whatever else attracted her. I never fully understood. She told me her biggest regret was not getting to live those senior years. Her plan was to interview them to gain access to the experience. I never asked her how she dealt with her own aging in place – frankly, her treatment arc may not have given her that experience. She went more from exuberance to frontline treatment to long remission then to 18 months of active wasting away. My trajectory is more steadfast decline.

            So much of life’s journey seems to be about taming the ego. I am middle aged but feel much older. It sucks but really, why care? If I let go of my ego (Don’t I look good for my age?) I can enjoy the sublime truths of being multi-age, nimble once, swerving towards dowdy now and voluntarily raising my hand for any treatment option that keeps me on this planet albeit feeble and slow moving. The same day as I drafted this I watched an older woman in her late 70s perhaps even early 80s, quite attractive, move swiftly from curb to the middle of a busy street where she then adopted a more sedate pace. I admired her. That is who I intended to be; instead I stick to my new one speed. But in that speed I bike wherever I need to go, I accumulate 12,000 steps daily per my pedometer’s tracking with 30 minutes of these steps taking place on a trampoline as I jog in place with weights in my hands hoping to rebuild some bone. I am not what I expected at this age or any age but with my new mantra of ‘slow and steady’ I get where I want to be and I have gained skills in leaving my ego aside. Perhaps, I am a more evolved person at this sedate pace, as if I care. 

End of Study Results: Great, Decent, or Just Sigh

It’s been 3 ½ years since my terminal cancer diagnosis and I still hold out for the letter clearing the whole misunderstanding up. “Ms. Westerling, we apologize for any confusion. It seems like we got some images hooked up with your case file that were just, well, wrong; you are fine. Have a good day.”

My friends are ready to celebrate good news but the only good news I want is a full and complete retraction. Anything else feels like celebrating a delay in the inevitable. I know this attitude makes me an ingrate so do me a favor and don’t spread the word that I am unsatisfied.

This morning I finally tracked down my phase one end-of-study results. The lead up looked promising and I assured myself that the delay in the final details didn’t matter because, clearly, I am trending in the right direction. But judging by my response to the official ‘good news’, I was holding out for better.

Would I have been happy for the best-in-show possibility of No Evidence of Disease (NED)? A result that never denies that microscopic ovarian cancer is floating about. Or would any result in this relentless new life path of staying alive despite cancer have reminded me of how harsh this life path seems. (Psst, I want my old life back!)

A growing debate gained volume this summer over relabeling some types of lesions out of the cancer lexicon. It lead to some juicy headlines that crossed my screen. Maybe in lieu of the letter I imagine arriving any day now, I could just rebrand my cancer. But that hope was dashed as well.

Now that I have had my wail, I must recalibrate to the small miracles that I am allowed. They add up. They extend life. They are worthy of celebration. My job is to adapt.

The End of Study results show that my volume of cancer has decreased but remains visible. The best I can get towards quantifiability (is it the size of an almond, the head of q-tip?) is this – I entered the study with a volume of 405, now I am at 44, a hefty and measurable drop for my loved ones to celebrate. I might just need a few days to stay grumpy at the 44.

In the meantime, Herman Wallace, after 42 years in solitary confinement, is released to die as a free man. He is in the final days of liver cancer. What seems a bittersweet victory might be much bigger for him or so I hope. I wish him an end in some lovely, sunny field surrounded by the many who stayed by his side over the four decades rather than the hospital he is liberated too. But mainly I hope that breathing in his final breathes as a free man heals the hurt of injustice. And this I will celebrate.

Meet Kim – 36, Stage 4 Lung Cancer & a Wonder

My best friend in cancer world is a woman named Kim. I met her several years ago at the clinic where we both get complimentary care to enhance our ability to survive our vicious treatment regimes. She was so young, so pretty, so caring towards others; and so bald. I wanted to encourage her. Then she showed up with dramatic weight loss, leaning on others to walk, even her huge smile was dimmed. I approached her husband when she was in treatment, giving him my contact information, “if I could be of help”. He gave a resounding “yes” and so we went out to coffee that day. Kim, it turns out, had just learned that her lung cancer that she felt confident in defeating at stage 3c, was actually stage 4. She was crushed with what that meant.

With brief daily exchanges, we track each others relative positioning – are we needed or are we both set to make it through another day with metastasized cancer colonizing our bodies. While monitoring each other we have fun. Perhaps the best part of our relationship is that we never need to explain.

But Kim is good at explaining. I think many of us wonder, “What the hell do other people do all day?” Well, here is a glimpse at one day in the life of someone staring at mortality all day, every day. Kim used to be a top athlete; now her triathlons are all with the medical system – our shared new norm.   warmly, marcy

One Day

by kimmywink

I worked on a little project for the organization Caring Ambassadors.  I was asked to write about daily life with lung cancer.  This is what I came up with:

Living with Lung Cancer is no easy task. It is difficult to decipher which is more difficult the physical challenges or the mental challenges. I’ve been asked to comment on what it is like each day living with my terminal disease. Honestly, I feel my life is better summarized on a monthly basis. Each day can vary greatly. Is it a doctor appointment day? Scan day? Day before a doctor appointment day? A day of total rest and relaxation? A day that the thought of me dying before age 40 leaves me immobilized, weeping in bed, and tightly grasping a heating pad? In a month’s time I go through all of these typical days, and then some.

I will run you through a Wednesday of mine. This particular Wednesday is a scan day, the day my cancer is checked up on to see if it is shrinking, staying the same, or growing. The morning looks like any other morning. I wake up before 8 am to the smell of brewed coffee. I have a cup while I make a morning protein smoothie. For the most part, I eat a very consistent diet in hopes to eliminate GI issues, that are often a problem. As a former morning person I say my AM’s are slow. After smoothie is made I plop myself back down into bed, with my computer, and 2 bottles of pills. Fist down is the anti-nausea pill; 30 minutes later is my daily targeted chemo pill. Once I feel like my stomach has settled, at least one hour after anti-nausea pill, I begin to prepare for my day. I dress head to toe in cotton, give myself my daily blood thinner shot, and pack a light daypack. Today I will perform my new version of a triathlon. I am going to have scans, blood work, and EKG. I’m even going to add a quick stop at the pharmacy for good measure. I arrive on time for a 10:00 am check in for scans. The first is the quick CT of my lungs and abdomen. Thankfully the needle went in trouble free and my blood work was able to be drawn from the same injection point. Next is the brain MRI. This image is peskier clocking in at 45 minutes. Once scans are complete I venture up a few floors to get my EKG. I did not get a latte before my EKG this time; I know it will show an abnormally slow heart rate because of that and a side effect of my targeted therapy. Oh well. After 2-hours of actual doing things at my care center and 2-hours of wait time, my only stop left is a quickie at the pharmacy. I need to exchange my full sharps container from my daily blood thinner shots for an empty one. Finally I am ready to leave.

I make it home without too much frustration after navigating the parking lot. I’m hungry and need to eat before nausea kicks in. I eat a nice salad and drink some herbal tea. Nap time it is. Me, laptop, and cat are ready for our afternoon snuggles.

Tomorrow I’ll be getting the results of my scans. I can’t help but begin thinking about it now. Finally, I am able to catch my required 2-hour nap. This short snooze gives me the boost I need to visit with my my sweetie when he gets home from work. We’ll chat briefly, then decide where to go out for dinner. It’s a night to celebrate and all my running around has left me unable to spend a drop of energy on what to make for dinner. The sweetie could do it, but it’s best to use his energy for meal prep when I’m ill and require his assistance.

Since the blood work was already taken earlier, I can drink wine and not fear that my liver counts will reflect poorly after such indulgence. After returning home from a great meal with meaningful conversation, we’ll end the night with an easy 8-block walk. Now, I am ready for bed. I’m dressed in bedclothes and preparing my evening drug doses. I’ve learned the hard way to take them when I still have food in my stomach. Anti-nausea pill down, anti-depressant down; 30 minutes later targeted chemo down. I’m now officially ready for bed. Or, better put, ready to lay in bed and think of all the possible outcomes of today’s scans. I suspect sleeping will be difficult; within reach is my iPod with several meditation tracks at the ready.

Some days are better. Some days are worse.

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