Plodding Along

For weeks and longer I have tried to draft an update that serves the purpose of sharing information. I have started many. They all languish for tone. They sound woeful and yet I write during a positive moment – I might be getting a second remission. Another remission was not very likely given this last 17 months of treatment failures. Remission does sound great. It is also hard to see it as more than a short break between treatment. My body and I are very, very tired of constant treatment so a break is not to be sneered at. My body and I are also tired of the constant suspense. Between bi-monthly blood tests and the ongoing lurching steps towards the UPenn trial, what happens next hides behind curtains that I do not get to chose.

I should be shouting out good news but really I am calculating the best way to get through the day. What are the top three side effects that I must fixate on tempering? I won’t list the options.

My orientation is towards planning, micro-planning perhaps. I have adapted to many aspects of my new terrain, this staring at mortality, but I find living with imminent death somewhere between the biggest uncertainty and a reality far too certain. It sucks for planning around. So then I fixate on the established treatment schedule, trivializing the point of treatment by feeling entitled to dates being met when in fact disease stability is the only real goal (and then extending and extending that stability). Of course my treatment plan changes to match my needs. But I hate how it ruins my carefully re-calculated plans again!

Friends, ever-loyal-beyond-belief friends, take over the planning details so that I have less reason to obsess. I focus on adapting to the new truths. I can’t tell you how many times my graduation date from this chemo regimen has changed. Most recently, after a tough week of accumulating side effects it seems that I might not go additional ‘extra’ rounds of this regimen but that wont be determined until March 28th, the same date as I am schedule for another chemo round – whatever. I will arrive packed for the decision we make.

Most of the time I just wonder as I live a life of such low bars. My days are a sequence of very, very small triumphs. And it is so many months now of trying to fashion this into a life.

I mange to get to weekly chemo, fast for 36 hours around each infusion, make it to my acupuncture appointments twice per week, exercise daily and not much more. I have idle hours. I sit and play at the iPad, read and think of the next tiny task I will attempt – maybe it’s sweep one floor or gather laundry. It is never as complicated as ‘do laundry’ because that is now a concept that needs to get broken in to component parts often over days.

I have mentioned my determination that 2013 would be the year I focused on living and returning to my old passions. And I have. It has exhausted me. It also derailed the writing projects I started. This girl-living-on- chemo seems only able to mange so much. Mike and I did attend the first national Anti-Fracking Summit in Texas in early March. The passion and determination in the room were fantastic as was our session on rural organizing. I continue to advise some of these new contacts as they work on the ground in rural america. Texas was great and yet how hard for me. I got sick and it highlighted the reality of being disabled in a fast moving world. One terminal friend inquired, “Is it too much, these attempts at being part of your old life?” Maybe, and it makes me sad.

I limp around an intersection between malaise and treatment-induced-exhaustion. It is a quiet place, fraught with intentions not to be realized any time soon. My forays just prove the point. But despite my disappointments at how hard a front line role in organizing stays for me restricted to cancerland, behind the scenes I continue to advise and be valued and I am grateful for this role.

The UPenn update is despite their ongoing delays, Holly and I are showing up on April 4th for a pre-screening since the actually screening can’t happen until their vaccine making building setup is expanded. Hopefully, my real screening will happen May 8th with the final vaccine making step taking place on May 22nd when they pull out and return my white blood cells to combine with the rest of the materials they have been prepping from my tumor removed back in October 2012. If those dates happen, I would receive the vaccine three weeks later – a date carefully calibrated to be within a window as well as on a day when only one other woman in the the trial gets her vaccine, since the FDA won’t allow more then two women to be treated a day during this highly experimental phase. Each injection needs to be timed for when a radiologist can use equipment to guide the vaccine to the selected groin lymph node.

This is not how I wanted to spend my summer, in planes travelling to and fro. Marcy the planner, had mapped this out quite well to be a winter activity. My entire adult life had been about building the life I wanted. And I did. This cancer phase is about enduring little control and still figuring out how to thrive. (Grrrrr….) And remember up until my formal screening, I can be disqualified for a roster of possibilities.

And ergo the party. What better time for a party then as a counterweight to my 3rd cancerversary – a time of reflection on the losses, new reality and being alive still. Spring is swelling around us. The passage into this new season assures we are all still here – living and building the best life we can. It is good, wonderful quite often, and yes, hard for all of us as well. A party is a chance to pause with the positive. Attending a dance party doesn’t mean YOU need to dance but that you will be in a room pulsing with the beats of life and a live dj that knows how to get your toes tapping from whatever corner you find yourself. Good food, good people. Me celebrating a birthday that, alas, is a triumph to realize. Yes, a party is a good thing. I very much hope to see you there.

Come Join Us!

Marcy’s (Birthday) Dance Party – live DJ

Saturday, March 30th, 2013 

7:30-10:30 pm

“Joy is the simplest form of gratitude.” ~ Karl Barth

Join together in gratitude for Marcy’s 54th birthday and the community that sustains us all.

No gifts beyond your presence.

warmly, marcy

Happy Holidays!

It’s December. Happy Holidays! I hope you are all well, enjoying the days of darkness and the promise of rounding the bend back towards more light with solstice.

My life is peaceful which I adore. I continue with my weekly chemo infusions, now over at OHSU which I refer to as my spa. It is a warm space to spend time – so much so that I rather enjoy my weekly ritual. The low, steady chemo dose approach is much easier to tolerate and even the projection that I would lose my hair seems unlikely. It is thinning (and I leave a trail of hairs as I move about) but not so much that I fear being bald. Small victories that I relish! I have added in fasting before and after the chemo in the hopes that it saves my good cells and targets my cancer for the toxics. Who knows. Each effort I make adds to my sense of possibilities.

Being a patient at OHSU is wonderful. It’s vibrancy exudes hope, whether for you or the next patient, but you can feel the hum of progress. I now get to experience a health team that is fluent on MY CASE. They seem to have systems that allow them not to appear wasted from an overwhelming workload. They are cheery and aware. And treat me like a colleague as well as the patient.

A favorite moment being when they asked me something about my confidence in the current treatment plan. My response included the intent “to be around until I am 72.” The doc turned to her computer without pause and said as she typed, ” well, thats a pretty important goal to get in your chart.”

I am moving towards testing with the exact dates yet to be set. I had hoped to stall until after the holidays but that may not work. Luckily, my blood tests indicate that I am responding to this chemo, although I need to remind myself that in this long 15 months of progressing while on chemo, my blood work showed I was responding, and I was. It’s just that I was also managing to grow new cancer. But with a 10 cm tumor surgically removed in October, the hope is that I have a head start this time.

The vaccine trial that we are trying to get me fully accepted in to awaits. Vaccines best hope of working is with patients that have a very low amount of visible tumor, ideally none. They are not equipped to disappear existing tumors. Their goal is to re-calibrate my body to be able to fight off future cancer deformities as they happen – like is happening in the bodies of the rest of you that do not have cancer growing. (Yes, you too have cancer, your bodies just evict it.) My intent is to go to UPenn regardless of what the scan shows and argue my case. That will likely be in mid January.

A hearty thank you to all who humbled me by attending my Livingly Dying reading on November 15th. It was lovely to see a standing room only crowd. My apologies to those closest to the door who stayed despite not being able to hear!

much love, marcy

Testing 1, 2, 3…..

Despite my  intent to write a caringbridge update in December then January, it has stayed a task I avoided as I wondered both “what to say? and “do I have to?” Thoughts I tend to have when I actually have few thoughts. But I know that many of you wonder if my bags are packed for Philadelphia. They are not quite yet.

2012 was a tough year in my treatment experience, largely because I never believed my treatments could be so unsuccessful. (I can state that “I am terminally ill with a hard to tame disease”, but that does not mean that I really accept it myself.) I went from one unsuccessful treatment approach to another as some tumors responded but new tumors grew. By the summer I was on a chemo that actually burned my butt, feet and hands – very surreal. You accept it in the moment because it is the reality but when you look back it’s like, “Wow. Really?”

My current treatment is considered easy to tolerate and it is. I expected to ‘graduate’ in December and was surprised then demoralized when the retrospectively obvious was stated for the first time – I should stay on this chemo for the complete 6-8 cycles (eg months) if it might be working.

This delays my start at UPenn. And the easy to tolerate chemo routine becomes less easy to tolerate as the effects are cumulative.  I find it harder to breathe when active, always unnerving. (The doctor says my lungs are not filling w.fluid – very good news.) Breathing hard after walking is just another side effect of treatment. The other morning when I biked to chemo, parked and got on the elevator with a security guard, I could see his concern at my heaving breathes. I hate that. It took almost 10 minutes to settle down so that I could talk. The same thing happened yesterday when I walked to a store. All Fall I tracked my hair loss to see if my thinning process would, in fact, lead to baldness. I felt triumphant as I still looked ‘normal’ in December but can I stall the effects of my hair loss for an entire 6 months? (You may wonder why would I even care. Well, I care.) Then there is the start of neuropathy in the fingers and toes.

I know the escalating breathlessness will disappear post chemo but neuropathy tends to stay a permanent companion. I accept these side effects of trying to stay alive, each of us has a similar list of barriers and struggles, but in the weeks leading up to a scan (vs the great cancer vacations of months like October and November) I find myself less patient with the equation. “All this and I’ll probably still fail my ct scan!” Such thinking happens. For those of you positive-thinking-all-the-time folks, please know that I have assumed the best when having most of my other ct scans and gotten walloped with bad news, so honestly, I dont think I am growing my tumors by wondering just what all my chemo distress is accomplishing. I have even added in two days fasting before and after each weekly infusion since early research shows it can reduce side effects and may amplify the chemo focus on the cancer cells – I am working hard to tamp down my tumors.

The delay frustrated me. It continues to frustrate me because I have no desire to spend my summer months traveling back and forth to Philly. This timeline should have been fairly obvious at the outset but communication and leadership is all the more challenging when you change providers and have a long distance trial you are trying to accommodate. Mainly I stay frustrated that so much of my life is about staying alive and the suspended state it requires. I vowed to find my footing in 2013, reclaim my life but building a life beyond the constants of daily health care regimes is just not that easy for me. I have only so much energy. I have only so much vision.

I have deemed myself in a malaise and thus exempted from much more then putting one foot in front of the other this December and January. But you wonder and ask what is going on with UPenn, which I appreciate. I will be scanned in late January with results on the last day of the month. Because my blood work is not an indicator of what is going on inside me, this will be the first real check-in since early August. If it shows no new tumor growth, I will stay on the taxol/avistan combo through mid-March or possibly early May. At that point, if declared by my doctor to have had an ‘optimal response’, I will then transition to the UPenn trial. UPenn requires seven visits to Philadelphia in a tight numerical sequence. (And forget about that corporate jets transportation.) I am still not ‘in’ the trial until I physically go there, get approved and sign the paperwork. Until then my slot can go to the next candidate but as I have worked for 18 months to qualify so has every other candidate faced these barriers. While it has been tempting at times to give up on this trial, my heavily treated body is no longer eligible for most trials. And UPenn stays a dynamic place for cancer break-throughs.

In the meantime, I stay distracted with the endless paperwork of being alive. And I scheme (thus far unsuccessfully) about a winter trip to somewhere warm and sunny. Or just warm.

Malaise – it’s a lovely word that hits the spot even when you are not quite sure what it means. It is “a general feeling of discomfort, illness or uneasiness whose exact cause is difficult to identify.” Okay, i probably dont qualify for the latter part of the description but I still claim the malaise of December and January and do not see it as a negative thing. I had lovely holidays. I enter 2013 with hope. And that sense of malaise that sits with me like my knitting, well, I think it is just fine for now.

Thanks you as always for the many kindnesses that keep this journey just fine for Mike and me.

warmly, marcy