Tag Archives: rebuilding

Almost One Full Year

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This May 27th 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 22nd 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

Camp Mak-A-Dream

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“No, No. Don’t make me go!” pretty much summed up how I felt as I lined up my gear for departure. I was stuck. I had promised to attend, a slot was held and my gentle husband expressed rare firmness as he guided me to the door. The rental car arrived and I was on my way in a snappy red car. My mood improved within minutes and I knew the decision to take this solo quest across four states, 700 miles and a vast, low population region to gather with other ovarian cancer sisters from across the country was more than sound.

Camp Mak-A-Dream was my destination. cmd-20th-logoOriginally designed for children with cancer, it now adds in sessions for women with ovarian or other (non-breast) cancers – an under-served population. I have enough friends that are camp zealots to apply eventually for one of the free slots (It’s all free!) even though I was reluctant to attend “camp.” Would it be one more humiliation in my new norm – life in cancer world?  But the new norm is all about letting go of ego; few of us make it through frontline treatments without losing control of every possible bodily function. Hairless and facing death, you are challenged to let go of all presumptions about what makes you important.

Nonetheless, choosing camp over an annual gathering of my organizing colleagues seemed a harsh statement. But I went to regain my groove.

Diagnosed in April 2010. Recurred in October of 2011. Still in my first recurrence two years and seven months later, it seems that I am now taking a rebuilding break from treatment to test my body. Rather than just staring into the endless abyss of treatment towards death, I am committed to re-entering the world of living. I wanted the daring of a twelve-hour drive alone through such a massive landscape to remind myself of freedom from treatment. Where better to re-prioritize my life then with a group of sisters who need no back-story.

I arrived a day late to a room full of women partying hard and yet quick to abandon their fun to greet me. I settled into my assigned cabin, found the Art Barn

Marcy's Camp Craft

Marcy’s Camp Craft

and, once oriented, bedded down to ready for a full weekend of activities. Time to climb the climbing wall, ride horses, zip line, attend a sex discussion for women living with hacked into bodies, screen the most excellent movie N.E.D (No Evidence of Disease – the rock band of GYN-Oncologists committed to giving solace to those living with disease and educating on symptoms.) And more….OUR RockBand!

The landscape is lovely. photo 3The camp is built around a subtly steep butte that we are all challenged to climb and we do, at paces that befit our bodies’ status, but no one avoided the challenge. Impressive indeed.

The staff and volunteers create a culture of cheer. It is a cheer that pervades the camp but never crowds out the awareness of mortality each women carries, the 18 deaths of campers in the past year are honored, the women in current crisis or hospice are talked about and tears of sadness blend in well as we exchange treatment realities and hopes. It is a setting of Livingly Dying.

I will close with what I loved most – the women supporting each other with mirth and attentiveness as we took on the challenge of rebuilding confidence in life. The zip line requires that you step off from the tree house ledge into open air. That step is huge. Some women froze as the minutes ticked on. From below we would cheer, reminding the temporarily stuck person that this was nothing compared to what we have already lived through – we cheered for however long it took. And then we each jumped into the abyss of life.

It's hard!

It’s hard!

Goodbye 2013, Hello 2014

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Since returning from my medical and holiday travels a few people have inquired, “So now, what is your status?” Ah, what a relevant question. Despite blogging, or maybe because of blogging, readers have been stuck on the same fast moving rollercoaster of highs, lows and plateaus as the patient, me. As we close out 2013, let me do my own little summary.happy_new_year_2014_266948

I close the year with apparent stability in my cancer. Stable is a very good word for a metastatic cancer patient living in treatment. Stable is my best bridge available to the next test results, especially given that I currently have some inconsistent results. Stable is a concept I intend to enjoy until the next round of internal tests in mid March.

Stability was my dream for 2012. That was a truly rocky year of new treatment regimes being met by new cancer growth, not a reality that can be sustained. A hard fought for surgery yielded better then anticipated results (bye-bye 10 cm of cancer) followed by a low dose chemo regime that finally reduced my remaining cancer bringing me to a start of 2013 where stability seemed possible.

2013 was a fairly easy year. I experienced the expertise and comforts of OHSU, enjoyed the easiest chemo protocol yet as I chipped away at the criteria to allow entry into the UPenn immunology trial. In early April a friend met me in Philadelphia for an intake visit that lead to my enrollment in the trial with treatment starting the first week of June 2013. Testing in January, May and September of 2013 was all relatively calm given the comforting lab results I was getting every three weeks. I was stable.

This fall, of course, began a rise in lab results and the pronouncement of new cancer and ascites (fluid in the pelvis) in the initial December scan, fast rectified by further scans and a lovely bit of holiday cheer. Who knows what is real?

I end 2013 ever aware that I reside on a cliff’s edge. I place my foot down with family and friends cheering me on and a stellar medical team leading the process. But it is my foot touching down on whatever loose rocks or solid earth is destined to be next.  I could plummet or I could close out 2014 boringly stable. We all find out together.

 A Happy New Year good luck marzipan pig!

A Happy New Year good luck marzipan pig!

I am proud I met my own goal to make 2013 a year I regained some sort of larger life. I focused on my Open Society Fellowship production of a how-to manual on organizing – the final completion date is this June. I was interviewed for a national magazine article covering creative approaches to community organizing. And, I started a blog called Livingly Dying that has had 17,827 visitors from 82 countries. I plan to continue these projects, tucked in meaningfully between the more mundane full time job of staying alive.

May my 2014 be a very, very long and stable year and may yours be whatever you seek.

Love, marcy

I treasured holiday gift - an 'I love ewe!'

A treasured holiday gift – an ‘I love ewe!’

Now, How Did We Get Here?

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I was recently asked to pen this summary for an In Her Own Words column for the regional ovarian cancer newsletter (http://www.ovariancancerosw.org/). Since writing the summary was helpful for me, I thought it might also be helpful for readers of this blog to step back and look at the consolidated version of the arrival and survival with metastatic cancer. So here it goes…..

In my own words…..Marcy Westerling

At age 50, I was having a wonderful time and experiencing exciting work as a community organizer with a passion for justice. I had founded the Rural Organizing Project (ROP) in 1992.

Speaking against wars at home and abroad

Speaking against wars at home and abroad

My 50th year was all about transitions, the most exciting one having me take a leave from ROP as I accepted an Open Society Fellowship to advance my model of organizing at a national level. Then, in the spring of 2010 as I turned 51, my bliss was derailed by a Stage IV ovarian cancer diagnosis.

It started on my birthday with a vague feeling of heaviness. I wondered if the lovely cake family had made was proving too much for my system. The feeling didn’t lift and in subsequent days I mentioned a sense of someone sitting on my chest. Odd. I stayed active, but climbing slight hills on my bike required breathing tricks – it was like I was practicing being a woman in labor. A visit to the doctor led to a diagnosis of bronchitis, which didn’t make sense given how well I felt.

At the start of the appointment I mentioned that I also had intermittent stomach issues in recent months and I asked to talk about that too vs. waiting for the appointment I had made several months back to take place. They said, “No. Both your lungs and your stomach are big topics – you must choose one.” The appointment focused on my breathing. I had never before left a doctor’s office feeling silly.

In the next week my breathing became increasingly labored until I could no longer talk on the phone to make an appointment. That night I could barely climb the stairs to bed. I dreamt of an ambulance coming for me. The next morning my distressed sweetie found no argument as he drove me to urgent care.

Luckily, the doctor on duty was fantastic. Oxygen was given and x-rays were taken before he even completed my chart review. In a no drama way, he said I would need admittance to the hospital to figure out, “why the lung of a young, healthy, fit woman had collapsed.” He was so calm, so was I.

I texted friends as we commuted to the hospital thinking, “I’ll never again have such an exciting 15 minutes of medical fame.”  I wanted everyone to know, “Marcy’s lung has collapsed!” It seemed cool.

The ER docs fast went from being comedic pals to sober workers as they narrowed the list of possible causes. They extracted two liters of amber fluid from my right chest, allowing immediate relief. I wouldn’t know until months later that that doctor told my friends in the hallway, “The situation looks grim.”

It would take a few exploratory surgeries and some false leads before I was officially informed on the side of the highway on April 22nd, 2010, I had some form of advanced metastasized cancer. For those who love drama, and the diagnosing of advanced cancer stories are always full of drama, details can be found in my short essay, The First Hello.

I have been in treatment since then. I often say, “I never went home after diagnosis.” Of course, I did but not really. My husband and I had laboriously and lovingly built the life we had wanted.

The happy couple 2009

The happy couple 2009

It was based on the premise of staying alive and in good health. We lived in the woods with few neighbors. A half-acre pond was our front yard.

Our home at the pond

Our home at the pond

All around the pond were the orchards, animal pens and never ending year round beds for vegetables and flowers. We fed ourselves from what we harvested, sold eggs and imagined a small farm stand at the end of our driveway that would be the pension that neither of our cherished day jobs offered.

We loved our lives but with this diagnosis, I knew immediately any effort to stay alive would require building a new life – it would be in the city and it would include rigorous focus. My husband was more bereft than I at our loss. I had choice; he was along for the ride. Luckily, we live amid rich community and friends took over. They housed us in the city during frontline treatment, handling meals and facilitating decisions, allowing Mike and I to be dazed by the chaos of disease’s arrival.

By my last of six frontline chemotherapy treatments, my CA 125 was respectable and our move into our new city life was set. We started over. We built a life accepting the “new norm” and geared to bolstering my odds. They say that diagnosis via a collapsed lung means you have a ten % chance of surviving to two years.

I passed that marker in April of 2012 with little fanfare, as I was seven months into my first recurrence with my cancer far from tamed. An essay, Expiration Date, marked the occasion. That summer was especially hard as I experienced fairly extreme Doxil burns on my butt, hands and feet before being pulled off that chemo which had had minimal impact on my cancer. I coped by writing It’s A Dying Shame and some other essays. I started a support group across ages and diagnosis; it was for women wanting to talk about staring at mortality and also called It’s A Dying Shame.

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language. This past November I did a reading at a coffee house of Livingly Dying essay excerpts and this September I travel to an Adirondacks retreat for a writer’s residency to decide where I might go next with the topic.

In April of 2013, twenty months after starting the qualification process, I transitioned from traditional treatment efforts to stabilize my cancer here in Oregon (OHSU) to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!

I had my official Phase One final treatment at the close of August. Odds are I will continue the commute for maintenance vaccines until I recur (and move to Phase Two) or run out of vaccine material in another year. But I await testing in late September and the resulting decisions. A great thing about treatment at Penn, though, is they don’t discard you from clinical trials if your disease progresses, the norm, they just adapt. I like that attitude. It matches what patients are forced to do.

Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure), I decided to write a blog so that others seeking to prolong living with advanced cancer have easy access to my experience. It is called Livingly Dying – notes and essays on daily life with terminal cancer and if you like it, I hope you will spread the word to others. To date women from 45 countries have accessed the site.

Perhaps bartering my body for medical advances will grant me more time to find the sweet spots of living fully while terminally ill. While I stay saddened at how deeply interrupted my life was and how likely it is I will die younger than planned, I do marvel at how content Mike and I are with the life we rebuilt. We had a good life. We have a good life.

The happy couple 2012

The happy couple 2012

Treatment Summary

Diagnosed: April 2010 Stage IV Ovarian Cancer – standard frontline therapy (Carbo/Taxol), optimally debulked, started parallel Phase Three clinical trial (BIBF 1120) in June 2010. Recurred: October 2011with multiple visible tumors in abdomen, started Gemzar/carbo. Carbo stopped in March 2012, Gemzar in April. CT Scans showed some tumors stabilizing while new tumors appeared. Started Doxil in May with Avistan added in June. Doxil stopped in August due to mixed CT scan and burns on hand, feet and butt. Surgery to remove easily available tumors set for early October – this was not technically a second debulking (because conventional wisdom of the time does not recommend them) but it did gather needed tumor for the Autologous OC-DC Vaccine Phase One trial I had been trying to enter for 12 months and gave me head start going back on chemo. Started low dose Taxol with Avistan in October 2012, which I stayed on until April 2013. Disease reduction with no new growth shown in January and May 2013 ct scans! My care transitioned to University of Pennsylvania with first treatment (Cytoxan, Avistan, Vaccines) of clinical trial June 5th and 6th 2013. My ca 125 has been at 7 since February 2013. (Unfortunately, I can have new cancer growing with a ca 125 of 13.)

To Philly and Back!

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I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy

 

Testing 1, 2, 3…..

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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

Transitioning to a New Life

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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.