Cone of Happiness

It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4^th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8^th, Aphereisis #1 completed on May 22^nd with my starting round of treatment June 5^th and 6^th of 2013. On March 12th and 13^th 2014 I completed my 15^th trek to Philly and my 11^th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10^th. The Internet told me a pericardial effusion was a bad sign. On April 17^th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

New To Do List

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Goodbye Avistan and Final Scan Results

The final results of my March ct scan are in, the RECIST read. The radiologist contracted for the deeper read for this trial signed off on my scan as “no disease progression.” In fact, there was some reduction of disease in the abdomen. I am still trying to get answers about the pericardial effusion but the doctor is out until April 10^th so I will content myself with everyone else’s lack of concern! Actually, they see the enlarged lymph nodes as a possible indicator of my immune system fighting per vaccine intent.

Why does my marker steadily rise? How to understand the aggravated lymph nodes and fluid around my heart? For now they are simple reminders that I am in a Phase One Clinical Trial trying to teach my body to fight back my aggressive ovarian cancer. There are many mysteries in this process.

I sometimes feel like the boy in the hills crying, “Wolf.” But the purpose of this blog is to make real life with terminal disease – constant testing, relentless waiting and then unclear results are a significant, routine burden.

The roller coaster of disease ups and downs, engulfed in bigger woes.

For most of 2013 testing was relatively easy because my marker was so stable but as the marker rises, my friends and I with terminal disease find we wait for the other shoe to drop. Stable pronouncements don’t calm as much as they should. But I am determined to accept this news as is – good!

Other news was unexpected. I need to stop taking Avistan, a core drug in the trial, because I have moved into an unsafe range. UPenn is rewriting the maintenance protocol in the hopes that the external review bodies will approve my staying in the trial. I don’t have anxiety about what happens. (My lack of anxiety is also because I am assuming that I will be able to go back on Avistan eventually or still opt in to the Part Two T-Cell Phase when relevant if I take a break from the drug now.)

Avistan is the drug I dragged my heels on starting for 8 months. I was supposed to start with my first recurrence in Autumn 2011. For months I stalled, often calling off the start in the final week even while knowing how lucky I was to have access to this incredibly expensive new drug that many countries and insurance companies refuse to pay for.

I distrusted Avistan for my own hard to justify reasons. It is actually not a chemotherapy agent but rather a “biologic” that works to cut off the blood supply to existing tumors, killing them. When I first started treatment back in spring 2010, I started in a Phase Three Clinical Trial where 2 out of 3 patients were given a trial biologic anti-angiogenic – I still don’t know if I was in the placebo arm or not. It was the marketing overkill, price tag and current reality of what it takes to bring a drug to market that fueled my distrust as well as the rumors that those of us who took the miracle drug got short term payoffs but when the cancer learned to go round it, the result was relentless. I took those rumors to heart. And it is a drug too new to even be approved for ovarian cancer or for anyone to know that proper dosing or use of.

The UPenn team really believes in Avistan and that has lessened my fears. I have now been on Avistan for over two years and my body has gradually been starved by protein being spilled into the urine. Now, I am at grade three status and the risks are too dire for my kidneys. Avistan’s side effects always kicked my butt. Maybe it was payback for my reluctance. Unrelenting nose pain and ever increasing headaches lowered my daily quality of life. I feel joy as I imagine approaching relief of these big discomferts. Ahhhh…..goodbye Avistan for now.

Thank you, dear readers, for staying with me on this roller coaster of disease. I enter a new year ever hopeful! Happy birthday to me.

Cone of Silence

The Cone of Silence is a repeated spoof from Get Smart. It means little. I am lowering my own Cone of Silence as I await a more detailed read of my test results from last week.

The preliminary intimations show cancer on the move in the chest including a pericardial effusion around the heart. Not good. I will update everyone when I take off my Cone of Silence, most likely when there is a plan of action.

I distract myself with Spring busting out all over – I saw my first trillium blooms this morning. Ahhh….. enjoy, marcy

Pssst…..

Here’s a secret. I’m a bit of a wreck. It hit the other night as my partner lay sleeping. I explored my lower right abdomen wondering if I could trace my dull discomfort deep within to cancer I could actually feel. I stayed up a lot that night. The next day, with light, I continued the exploration. If there is cancer growing within, my fingers are not the ones to detect it. A small relief.

I am in the countdown to testing. It’s been awhile since I have faced freak-out tests.  While scans and blood results always come with anxiety, this round, scheduled for next week, returns me to the sensations of 2012 when my body and mind crumbled as each testing cycle that year revealed more bad news.

I know I should ‘make a plan then work it’ but what would that plan be. It probably wouldn’t be me walking the streets of Philly for two days of treatment combined with testing then getting the test results – alone. But then I try to imagine the elegant plan, being attended to by my many loved ones buffering the blows, and I don’t see the corroding pit deep in my stomach unclenching. I am alone – this adapting to my revised expiration date is an inherently solo and lonely process. At least for me. This solitary journey towards the update is not the problem. The problem is the news I fear getting. There is no safety net large enough to cushion the blow of my cancer doing an end run around this immunology trial.

Better to plan around the concrete stomach churning and shallowness of breath as anxiety locks down my systems. Better to dig out the tools taught me for calm, so I complete the simple meditation exercises that assist my body and mind in melding to the moment – never quite as bad a moment when approached with such attentiveness. Better to hunker down with the coping and resurface when I know my new reality.

But I leave you with this memory.

Amid getting my diagnosis on the side of a highway, as my ER doctor shared the test results that showed I had advanced cancer of still unknown origin, there was magic. My daily life is not filled with magic so I have learned to enjoy it when it does show up.

I had pulled the car over when my cell phone rang that rainy April late afternoon in 2010. It was a point on the road right below a dear friend’s home. It’s a quiet stretch of road so the call coming just then was fortuitous. As I sat in the car hearing the messages that chilled my blood for their tone, I prepped for making the call back. Just then the phone in my hand rang anew. Another dear friend had spotted my car on the side of the highway and called asking, “What’s up?” I explained, “I am having an emotional breakdown.” She said, “Want company?” I said yes. Within 30 seconds she was pulling open the passenger door and slipping in. I told her I was pretty sure I was about to get devastating news. I made the call, heard the doctor’s words, repeated them back so that Cara would know the verdict and said goodbye to the doctor.

I have wondered since then what others do when given the news that their life as they constructed it is done.

Cara and I held hands. I think I wept, silently. I said, “Let’s see if Kelley is home and call in the team.” Of course Cara knew exactly what to do as did the at-home Kelley. In fact, both my husband and yet another dear friend were already frantically en route, the doctor having given them the news prior to me. Within minutes we were gathering in Kelley’s living room, which she was setting up like a cozy bistro with foods flowing and plentiful seating. I went upstairs to call my family and collapse in loud pain. When I came back down the living room was filled with a circle of love, people prepared to walk wherever I needed that night and the longer term as we all committed to my new path. My strongest memory is maintaining deep eye contact with each individual as I relentlessly asked them to pledge to stay by my side, to help me delay death. And they have. It doesn’t mean that some sections of this road I still travel alone.

Thank you for keeping me in your thoughts this next week.

Much love, marcy

p.s. I feel much better just having written down my reality as my dog sleeps at my feet. Life is good.

Princess Warrior & Positive News

For the first time since October of 2011 I have a ct scan that shows no sign of disease progression. Phew! (There was disease reduction but it is unclear if that was active cancer or dead tumor dissolving.) Stability is the name of the game.

If I can stay this way for two more four-week cycles of weekly Taxol, I would graduate March 14th, have my next ct scan on March 25th (aka my birthday) and head to UPenn starting the first week of April.

Many, many ifs but many fewer then we have hurdled over in the last 18 months!

I am a little numb after an intense weekend retreat on the topic of cancer, the test and the mind-fucking countdown to test results. But after a night of rest, it will be a good time to party.

I share a photo of an imposing wood carving entitled Princess Warrior that is a museum quality wood carving on loan to me from a dear friend who showed up with it one day. Her partner died in less than six month’s time of stomach cancer in 2008. He had left a great job to become a self taught master woodcarver despite the calling offering less pay and no health benefits. He died content with his choices. Princess Warrior was charged to protect me. I feel protected by my beloved partner, my friendship,political and family circles and now this defiant art. (Let alone the swaying prayer flags of love).

2013 is the year I intend to move my cancer from center stage to being just another strong character among many in my life. Towards that end I am thrilled to be heading to Texas in early March to train up the (first ever) convening of national anti-fracking leaders on rural organizing!

I don’t hate my cancer but I have resented deeply the way it has narrowed the scale of my world and activities. But watch out! In December I coordinated a salon on the privatization of mail services. I am back doing more regular support planning with the great gals that keep ROP vibrant. And I am thrilled that my first trek to UPenn is actually bookended on to an existing NYC meeting set up to better understand the work of the ROP. Sarah Loose and I continue to plod forward on our organizing manual. And much more.

I may move the body slowly, focus the brain with increased effort but I am alive in this world and enjoying that gift.

Thank you!  xo marcy

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

Not What I Wanted…New Scan Results

Well, it’s my 3rd ct scan in a row with lousy news.  I have new cancer growth after 5 months of chemo.  19 chemo doses and the cancer is growing.  It’s enough to give a girl doubts.

So, I will get another port installed asap with great hopes that the surgery works this time because the veins are done.

And then I will start on the imported doxil that I should have gone on 6 months ago were it available.

My bone marrow is very tired but my body continues to function fairly well.  I biked the hour each way to get my dour news.

And my great ‘research’ team abandoned their personal plans for last night to huddle instead over strategies to get my prior clinical trial unblinded and leave me eligible for a new clinical trial out of Pennsylvania.

And that’s enough to give a girl the sliver of hope she needs to keep on keepin’ on.

Enjoy the now because it is real.

xo  marcy

p.s.  The photo attempts to show a work I made at a death and dying workshop last summer.  You may or may not be able to tell that the turtle is literally 1/8th off the work and leaving the lovely nature scene.  I was trying to create the sense of moving forwards, regardless, to inspire me when it all seems a bit much. (Of course, the turtle and I both know that she is headed to an even better beach.)