Almost One Full Year

This May 27^th marks the close of my first year of blogging. I got into it by happenstance. Last May I was adjusting not only to entering the clinical trial at UPenn but also to the ambitious cross-country travel for this experimental treatment. I was hobbled by my first bout of bursitis. Not able to move, I explored the world of blogging until I had my own site. (Thank you, WordPress and Kim W.!)

The blog expanded the world I communicated with beyond the valiant friends and family listening in via my Caringbridge site to whoever might want to find me. I am still learning the value of tagging each post so that folks able to access the Internet, whether in Isle of Man, Belarus or Palestine, can find my Livingly Dying blog.

There have been 33,160 visits to the site and while 27,144 originated from within the United States, 6,019 came from another 101 countries.

I like to think the blog lessened other people’s isolation with disease. This blog certainly reduced my isolation. Thank you for the comments, insights and support. I also hope the blog championed the possibilities of clinical trials and immunology even as it offered an overly realistic glimpse at challenges of trial participation that required significant travel.

A year ago, paperwork was just signed making me officially in the trial. I awaited my Apherisis on May 22^nd to gather the dendritic cells to combine with my harvested tumor for the kickoff vaccines the first week of June. The year was filled with the predictable highs and lows of a terminal cancer patient choosing an ambitious Hail Mary pass.

This week I officially enter an observation phase. It has already been two months since my last treatment and the deleterious effects of the drugs are waning. My ca-125 continues to rise and is now at its highest point since frontline treatment. What should trigger concern means less because I am an immunological experiment – and science is beginning to see that patients undergoing immunology don’t always have a steady or fast path towards cancer stability. Rather, my body might be learning, which is good, and part of that learning is mastering the skill of recognizing and then eliminating cancer as happens in a healthy body. For those who love to understand, watch this scientist-to-scientist video explaining the emerging breakthroughs of immunotherapy http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/

I will not be retested for months – a thrilling release to enjoy my first break from treatment since I started this journey with metastatic cancer four years ago.

I intend year two of the Livingly Dying blog to focus on rebuilding and thriving as I work to extend my own break from treatment with expanded efforts in self-healing. If you have your own thoughts for what you would like to see more of on this site, please share.

Warmly, Marcy

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The Flight of Val

My friends,

 She is gone.

I got this simple post a day late. Weary from an all day cross-country plane trip, I now waited for the train that would take me towards my lodging. I was alone in every sense standing on this empty platform. My Smartphone informed me that Val was dead. My breath caught.

There was no surprise in the news. I had visited Val in hospice the night prior. Val lay there emaciated, glowing, moving in and out of lucidity. Cancer had won the struggle for the body. Diagnosed at 39, surrendering at 44, Val, in the words of her obituary, “relished life.” In the same obituary it noted, “In her hands a cancer diagnosis became a creative medium for conjuring an astonishing rich garden of community.”

I was lucky enough to be a small part of that community.

Val had stable cancer when I met her three years ago, two years into what she once called “This Great Difficult Thing” but she was still getting her ‘magic juice’ every three weeks with an eagerness I found encouraging. Here she was, made to order. I had put the word out that I wanted to meet a stage iv woman younger than me. I needed to be shown that this journey was doable. Val was a good one for inspiring. When I learned she biked everywhere and was recently seen splitting wood, I requested a date with her.

We spent hours strolling the gardens of Crystal Springs. In retrospect, we both lied a lot, saying how, “this was ok, this knowing that we would die younger than planned.” Despite the big lies we shared the smaller truths of how to find comfort with our terror, how to break down the enormity of our diagnosis, how to cherish the invigoration of knowing that mortality was now more than a concept.

She started her own journey by reminding us that, “None of us are getting out of this alive.” Indeed.

We met a month into my own diagnosis. I still had my long hair on that walk. Val and I were different people – she butch to my femme, she poetic while I sought solace in linear thinking, she musical and I without rhythm. And yet we were consigned to the same path, different entry and exit points, but a specialized highway for those with terminal cancer.

We didn’t maintain a high volume of contact. She was enjoying probation while I was entering lockdown. We had different needs. But Val was always there for me.

Our groups, her Salon of the Scathed and my It’s A Dying Shame, became complimentary platforms for exploring the taboo topics encountered when walking towards death or having death walk towards you – it’s never really clear with cancer. Humor, irreverence and rawness were core to our shared style. We were determined to experience the range of emotions and to enjoy the process.

Val wowed me with her soul too large to be tethered in one body on one planet. I don’t know where we go next. I am not in a rush to find out. I like to imagine Val as her own little prince on her own little planet still enjoying sunsets and sunrises – one more image of Val to delight.

Val wrote once, “I want there to be a good story to tell. How I will do battle and overcome. How you can all relax and not be afraid to click on this blog. And in truth, even if the thing does grow there are many more steps to take. There are more options. More story.” The story is now in our hands.

An ode to Val by Marcy – May 2013

Hobbling Forwards

I spent an hour yesterday cursing my way through our households vast ruler supply seeking a devise that measured in centimeters.  I was determined to respond to my newly arrived test results with my head not my heart (or whatever part of me ceases to function when it encounters dreaded words like new and growth and lung.)  With a ruler found that used centimeters I could make measurable those words.  And so my test results that initially took my breath away were neutralized a bit.

I did not get a wonderful result on my ct scan of this week.  But it was at worst soft bad and, perhaps, almost neutral.  I dont see my doctor until Friday so I still speculate.  Of my 5 cancerous nodules in the abdomen and pelvis 3 showed modest shrinkage, two showed modest growth.  Two new shadows have now made it in to my left lung for the first time but only time will tell if they are indeed cancer and if they chose to grow.  My right lung stays stable.

My big goal these days is disease stability.  My current pattern of some shrinkage and some growth, might average out to minor changes in disease volume but they are not disease stability.  If I was not midway through a new treatment regime these results would be more dire.  But since these drugs are slower to work, we can look at the possibility of positive results around the corner.  Why the hell not.

Its not been an easy few weeks.  The main drug I am on, doxil, aka the red devil, requires enormous preemptive work to minimize the devilish impacts of burning, burning, burning.  A chemo buddy (thank you, Holly) helps me ice during treatment (not easy!) and then I stay on ice as much as I can for the next few weeks.  This drug is a cumulative one so once the burning starts it only gets worse with each cycle.  There is no real solution for it – ice, salve, ice, salve.  Avoidance is your best plan. I now better understand the starting suggestion of no repetitive motions which made little sense when shared as advise – why did that mean no washing of dishes or housework.  But now I get it.  (Of course, they are too shy to say no intercourse.)

My poor butt brings me to tears as I try to find clothing that I can wear and a chair that can accommodate.  And then there are the poor hands and feet.  The left hand curling to a painful claw for the majority of each treatment cycle.  The feet look better but hurt, hurt, hurt especially when rested in the only shoes I can still wear.  I hobble and curse.  And by bedtime, cry.

Initially, I so wanted the test results to be good enough to keep me on doxil because that would mean that there was some positive news after a long year of disappointments.  But the night before I got the test results I finally decided I could endure no more of this being burned alive.  The test results arrived as the peak of the burning passed.  I live in the now and right now the residual sores on my butt, hands, and feet are manageable.  I presume that my cheerleaders and I will manage another few cycles of this hell if the doctor recommends it.

For those who visit, you may witness more pain.  And you may be asked to sweep a room, or straighten the bed.  (There is just so much that I can not do while on this drug.  And Mike is needing to do so, so much.)  If everyone completes some minor task, the house may stay neat and that is the kind of detail that makes the world of difference right now.

In the last week, as I tried to relocate from one spot to another with enormous pain, I told Mike, “dont ever let anyone say ‘that at least she is out of her misery now’ because I can accept this pain.”  Of course, a few days later, I wondered. But pain passes.  And then I stare in awe at a flower dropped off by a friend and appreciate being here.  This is hard but so is life which I so choose. And so that is my small update.

Luckily, by Saturday’s dance part I should be at my peak of recovery – hope to see you there.  xoxo marcy

Early Detection – Delaying Mortality

In the world of cancer, a land 1 in 3 people will visit in their life time, the stage at detection determines whether it is a minor nuisance or the close of life. There are only four stages.  I was diagnosed at the fourth stage otherwise known as metastasized, advanced, systemic or end stage cancer.  None of the stage IV descriptors are meant to sound good.  But early detection, now that is good.

February apparently is early detection month – this is my contribution to that effort.  (It is also black history month – African-Americans are disproportionately impacted by cancer in this country mainly due to less access to medical care.)

Ovarian cancer is known as ‘the silent killer’ but most cancer functions silently.  Abnormal cells start growing, are not evicted, create a mass, travel around and at some point they get big enough to create a secondary problem.  Big enough is often too big.  There are over 2000 forms of cancer and trying to be on top of all of them is hard for the best of the oncologists. So how to detect early with out moving towards hypochondria?

While my expertise is limited to my form of cancer, I have found tremendous commonalities exist.  Unless you have a huge tumor grow fast and protrude from your body, usually the easy ones to treat, you are looking for subtle symptoms.  Now let me describe subtle – it is not the discomfort in your big toe or a passing stomachache – subtle here is about persistence.  For ovarian cancer if you have any issue in your abdominal area that you note for 11 days out of a calendar month, well, it’s time to make an appointment.  Those 11 days do not need to be in a row.

Now odds are your doctor will pooh-pooh you especially if you are younger.   I was allowed to leave my first appointment with a lung approaching collapse that was dismissed as bronchitis despite the fact that I felt fine, I just couldn’t breathe.  The aide who checked me out tried to console my wasted visit with a “better safe than sorry” mantra.  The next week I was in the emergency room, barely able to walk, talk let alone breathe leading to an emergency tapping of my chest cavity that removed liters of cancerous fluids.  No, don’t expect your doctor to decide you have an issue.

If you want early detection you are going to have to work for it.  Calendar what you feel, know your family history, push the medical community.  And if it ends up being nothing leave with joy in your heart.  Your job is to check fiercely and then let go.  I had my symptoms for at least six months prior to emergency diagnosis. It is hard to find a photo from that time where I am not holding my stomach.  The discomfort was modest but persistant. Every woman lives with occasional symptoms that make up a gynecological cancer – so the trick is duration not severity.  It is hard knowing that you could have been caught at an earlier, survivable stage.

Testing for cancer is not easy with so many different cancers to be found and defenitive diagnosis requiring surgical probes.  There are simple blood tests but they need to be matched to the cancer being pursued.  And a positive blood test sets off much more intrusive testing.  Doctors have good reason not to seek out cancer casually.  Breast exams are an example of progress but they yield a high percentage of false positives leading to stressful, invasive follow ups.

So then again, you just might want to hope for the best and instead apply early detection to fiscal matters.

I am not known for careful administrative control of my life.  The first time I filed taxes I sent them to the wrong state.  That state was grateful and insisted on keeping them despite the fact that I really owed the amount elsewhere.  This experience may or may not have influenced my conclusion that the less I attended to financial matters the better.  I coped by trying to minimize my exposure – I spent very little.  It served me well in management because I avoided expenses and made checks and balances very, very simple.  I ran organizations from age 23 on and was known for this effective but odd style. This month I got my comeuppance.

When diagnosed, I relocated for easier access to services that can be found in a city in the hopes of prolonging my life.  My small town credit union account became my savings and I opened a new credit union account near to my new home.  My new account handles my bills.  I peer in monthly to conduct business.

Every time I tried to peer in to my old account, though, my password wasn’t accepted or the test questions were too obtuse for me.  What was the name of my last dog?  My dog just died after 16 years – which last dog?  And was it all lower case?  By then I had tried too many times and was locked out.  I could never get in.  Finally I vowed to make it happen, hung on the phone for personal guidance, got into my account and thought ‘holy shit!’  I fast dialed the teller back and said something is very wrong.  In fact, in the last month my account had been blatently hacked – check after check was signed by this dude, Brandon DeWeiss, from his checkbook, with his address in Gresham and his signature. And yet my account was paying for it.  To the tune of thousands of dollars.  The fraud teller assigned me, while very nice, had a changing story of what I was liable for. First it was anything beyond the last 30 days, then it was the far more dire liability for any fraudulent check not caught in the last 24 hours.  So, am I supposed to check my account daily? And when did banks start cashing checks with out looking for any sign of relevancy?  And when did that lax attitude become my problem?  My account is now full restored after a few days of deep stress.

So I guess early detection is a good rule for life. I am not sure that I am the best to guide anyone further along that path, though.

The photo shared here just won an award.  It reminds us that beauty lies everywhere.  In this photo you see ovarian cancer.

Back in Chemo-land

Christopher Hitchens died a few days back from his cancer and while I was mainly neutral on his work, I did develop an affinity for him as we both underwent our dramatic diagnosises with advanced cancer in the Spring of 2010.  He chronicled the strange journey so well that I could relax in my own attempts to describe it.  His initial Vanity Fair column on his cancer became one I referred many a friend to, then and now, for being so spot on.

He describes the original process of calling in emergency help, “…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.”

“The new land is quite welcoming in its way. …the humor is a touch feeble and repetitive, there seems to be almost no talk of sex, and the cuisine is the worst of any destination I have ever visited. The country has a language of its own—a lingua franca that manages to be both dull and difficult and that contains names like ondansetron, for anti-nausea medication…

He wryly notes, “In whatever kind of a “race” life may be, I have very abruptly become a finalist. To the dumb question “Why me?” the cosmos barely bothers to return the reply: Why not?”

And then with these closing paragraphs he captures the odd bargains, suffering and causes an advanced cancer patient faces when they know how the story ends and yet vie bizarrely for more time.  “The oncology bargain is that, in return for at least the chance of a few more useful years, you agree to submit to chemotherapy and then, if you are lucky with that, to radiation or even surgery. So here’s the wager: you stick around for a bit, but in return we are going to need some things from you. These things may include your taste buds, your ability to concentrate, your ability to digest, and the hair on your head. This certainly appears to be a reasonable trade. Unfortunately, it also involves confronting one of the most appealing clichés in our language. You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.

Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.”

So Christopher Hitchens publicly ‘lost the battle’ on December 15th 2011, a battle more accurately lost on the day of his diagnosis.

It’s been a long silence from me on the caring bridge site.  And not one of those good silences but one where I have tried to decide what is my mood as I face ‘livingly dyingly’ (again in Hitchens’ words) with suspended despair.  I don’t want to waste my time with sadness but dang, recurring so fast and with the first choice drugs not available, it is hard not to feel a steady drum beat off in the shadows.

But I do apologize for being so lame at getting out an update.  Many days I try but before I can decide what to say I have lost my limited energy.  I could say ‘I am fine’ because basically I am fine for a stage iv ovarian cancer patient in her first recurrence.  I could confess how hard this reentry into chemo land has been; bore you with my medical woes that have seemed endless this round.  But I don’t want to dwell in my pain for a moment longer than I have to.  Soon I have a good day or hour and I am caught up in appreciating those moments.  “How am I?” is a volatile question that I rarely know the answer to.

I have loved these short, dark days of late Fall.  As the solstice approaches to mark the return of light I have mixed feelings.  A marker I have so long relished I now wonder if I am up to.  But I suspect I will be.  This week, a week of relative good health because my chemo was delayed yet again due to low blood counts, I actually started pulling out some projects, making lists, test driving my brain and finding some traction.  With the help of so many of you, I remember to put one foot in front of the other and find that I can get somewhere and that’s not bad.

Mike and I did manage to visit my relatives in Holland prior to starting chemo – a lovely sendoff.  Our other jaunt was to a cancer retreat that reminded me yet again that the patient and primary caregiver face equally huge burdens, so, as always, a huge shout out to my beloved Mike.

lots of love and happy holidays, marcy

Travels & Work Despite Metastasized Cancer

I have been quite remiss in my postings but as some have noted, less news can be imagined as good/neutral news. Health wise I hope still to be stable in remission. My last blood test in April was my first upward incline of numbers, very scary for what it could portend but too isolated to indicate much yet. I chose not to get another test prior to departing for a month reasoning the most obvious result would be another uptick in numbers walking me out of remission and the best results just kept me waiting for the next test and the test after that eg my new status quo. Cancer vacations are fun and all the more so when combined with a real vacation. I opted for the cancer vacation.

Back in late October 2010 I received an email you never anticipate. It was simple, stating “We’ve begun planning the Open Society Fellowship Reunion, which will take place in Budapest and Szilvasvarad, Hungary from June 7-11, 2011. At this point in time, we’d like to ask you to confirm your participation in the event. “ A part of my life that I had tossed aside when diagnosed was further travel. Travel, especially work travel, is inherently stressful for the body, the correlation between stress and ovarian cancer is more substantiated than for other forms of cancer and it was an obvious item to delete. I decided that I would not travel again. That stayed my thinking norm until this email popped up. My immediate response to the email was ‘Hell yes, I am going!’ And then my travel ban was on weak footing. Thus, in January I traveled to NYC for a rural convening. I returned home to plan a much more ambitious trek that was bookended by two political commitments – the long planned convening of front line organizers to Map the Right up in the Adirondacks and my Hungarian visit to the castle. Wanting to avoid the radiation and stress of back and forth plane travel, I needed to be gone for a month. And thus began the planning for a 32 day journey.

I just returned home late last night from these adventures. I cannot recall a single dull or sour moment. My body, after some initial drama, settled into the adventures. I was able to practice decent patterns although my diet rules dissipated fast. Blue Mountain Center, the retreat site in the Adirondacks that was stop one, has phenomenal food all healthy but they seem not to have gotten any bulletins regarding sugar. Not only did every meal offer dessert but they have clear glass cookie jars offering different home made cookies at all times….they have no one minding the cookie jars which I took total advantage of! And once my sweet tooth was activated little was safe.

My final two and a half weeks were in Hungary where one traveler quipped ‘you could well experience a soviet bloc.’ It’s a heavy diet laden with meats and sweets. Salads are true work to find. My post surgery body is at high risk for bowel obstructions leaving me pretty nervous but suffice it to say, I survived but was eager to return to my magic vegiemix for blended vegetable drinks to launch every new day starting with this morning!

It was lovely being gone and it is lovely being home. Seated here writing I look out on our lush yard, have already walked to get fresh produce and hope to walk over to a friend’s house later today to meet their newly born baby. It’s not been 12 hours and already Kaiser has summoned me for new appointments and tests. The full cancer vacation may be over but I hope to maintain a new balance between my dire diagnosis/prognosis and the lightness and beauty of the world that I get to enjoy.

When I first agreed to these travels I viewed them almost as a ‘goodbye tour’ which was how I coped with my new world order – everything was about closure. As I travelled, though, my commitment to closure faded. I awoke each day and found hours passed before I ‘remembered’ that I was on borrowed time. I intend to stay grateful for every moment I have but my travels returned me to the living as I made new commitments, planned for a full future and hope, as we all do, for the best of luck and medical care to keep me alive.

I would share more details of the travel but for now, as a woman with many commitments, I had best get back to work.

With love, marcy

Life in First Remission

I apologize for being so quiet but settling into a new house, new routines and submitting a new work proposal have kept me busy. Today marks the 6-month anniversary for being diagnosed. And I could barely care.

I wish I didn’t have metastasized cancer but if I do, so be it. I have more fun things to pay attention to. (Not that understanding this disease is not fascinating.)

I wont deny staying sobered by what comes next and when. I am scared for my early November tests and appointments that look back inside for the first time since early May and might see more than I am ready for. I still can’t face the grief of looking back at what precious parts of our lives we have given up. But all in all, me having stage iv ovarian cancer just is. Whatever.

The new house is lovely and serene. My new neighborhood reminds me of Scappoose. I am loving being able to bike and walk everywhere and soon plan to master the bus system. And while I may not be ready to look backwards, I love bringing my old life forwards as I construct a new phase of life.

In the next little bit I make three treks to Seattle. First to pick up an award (thank you, Social Justice Fund http://socialjusticefund.org/july-2010-vol-8-issue-6/article408) then to attend a multi- day research symposium on Ovarian Cancer, and then return for my long awaited second opinion.

Being off chemo is wonderful. I even have a cap of fresh hair sprouting. Since the blond whisps of hair on the pale scalp stay hard to see, I am fast to grab people’s hands and make them feel that yes, I have hair! Strangers beware.

I feel fine most of the time. I wish I were less bloated with fewer gastro-intestinal upsets and the surgical spots rebelled less when I am active, but nothing really limits me. I am so grateful for the pink flowers that just popped out on our camellia bush on the 20th of October, and the blue sky and the surprise packages that arrive in the mail. I love having the time to enjoy life. I feel very much alive.

And that brings me to you. Statistically, I should die in the next five years but I am hopeful for my own story being extended. Why? Community and love – even studies show how community and love changes dire outcomes. And I feel the love and live the community and it makes me feel ready for whatever happens today or tomorrow. Thank you making that so potent.

Much love, marcy

Transitioning to a New Life

Transitioning to a New Life

This week closes out my first three months of living with metastasized cancer. Stage IV Ovarian Cancer to be exact. As someone commented, “a bump in the road’ to which my sweetie responded “yes, a major bump in the road.” But he laughed as he said it. We stay still saddened by our new realities but also feeling like “We are and will be okay.”

So here is a little snapshot of our moment.

I am glad to be leaving the poorly scripted emergency phase of shock and awe. Frankly, I can’t look back and begin to figure how we could have coped without the swift intervention of so many caring souls. Mike and I bumbled through those first few weeks as grief stricken automatons. There is just nothing reasonable about having everything we carefully constructed and adore about our lives being torn to shreds. Add to that the trigger word of “cancer” combined with “advanced” and our ability to grasp reality disappeared.

Month one we were in full shock. Month two we realized it was time to get with the game. And, by the close of this month we are feeling about 60% present. July 20th marked the close of our emergency trimsester.

Mike and I are doing well. Being protected by family and friends allows us the space to catch up. We do not like our reality but we are ready to deal with it as the loving team that has carved out a homestead in the woods and pushed for new frontiers in justice organizing. We will deal with it as the same loving team. Now we calibrate options for homesteading and organizing with one new reality, getting me into a very long term remission (length of time in 1st remission correlates with length of life.) There is no recipe for staying in remission. We recognize our limitations and the serious stakes we face. But we also feel hopeful.

Medical staff at Kaiser actually used the word ‘great’ in a sentence describing how I was doing – a first from the world of dour oncology. And my tumor marker continues a jolly downward trend not only indicating it is a useful tool to assess how I am responding to chemo but also that I am on a clear trend towards remission.

One bittersweet recognition is that my permanent health status might require me to be in thick of resources vs the woods. Leaving the woods, the pond, the year round garden and our many sources of homestead joy is a tough and still not completed decision. But we are looking for a new home in the city.

The next step in our stabilization phase is returning to living on our own.