Thanksgiving two month anniversary

Michael and Camillo 11/11

This is the two month anniversary of Michael’s death. I started the day trying to list everything I had to be Thankful for and quickly started having break-through thoughts about all that is not going well in today’s world. I did a short medjutation (where you half sleep and half meditate) and called it good because it wasn’t. All day I was just slightly “off” without being noticeably off kilter.

Us, Thanksgiving 2012

Selkie got a bath. I baked and cooked and did other chores. Orien and Nick, who visited last Thanksgiving too, walked a Five K Run for Food.

Nick, Orien and us Thanksgiving 2013

Orien after the 5-K

Dinner was at five and was fantastic. We played a good game afterwards called “You’ve been sentenced” which had everyone laughing. I came home early to my silence. No one said what I’d most want to hear– Gee, I sure miss Michael.

 

Oh well. I sure miss Michael.      

 

 

Federal Trespass vs. War Crimes

Sunset Main Gate Beale AFB 12/24/2014

My Letter to the Base Commander

Last night I got to the Main Gate at Beale AFB right before dusk and there were no other protestors there. One of the young men from the base walked out to tell me I couldn’t take photos toward the base as I was taking photos of horses and the sunset. Soon Shirley, Barry, Sharon and her husband came and we had a lovely little potluck. All were either gone, in their cars or in the case of Selkie and I, in our tents, by 8pm.

First thing in the morning we were out with our signs. I had decided to cross onto the base and give a handwritten letter I’d written (on the back of a commemorative photo of Michael demonstrating with Vets for Peace.)

Shirley had already been arrested four times at Beale but she chose to accompany me and that gave me strength.

We spoke to plainclothes military first and then were put in the gatehouse… unhandcuffed, to be “processed.” In the meantime, someone from Public Relations came and I impressed on him how important it was to give my letter to the Base Commander. If I wasn’t so tired I’d quote it here but it will take awhile to transcribe it… I’ll run it in the paper as a Letter to the Editor.

After a space of time we were released and the plainclothesman took our group photo and we watched the Global Hawk drone take off. (This surveillance drone is different than the manned U-2 that you see in the photo with John and Pam. It is used to target humans for annihilation without trial or even credible evidence… One example, 6 people killed in a drone strike on a house in Pakistan this month.. that’s all we know and all we are likely to ever hear about this.)

At the end of our time at Beale I visited the little olive tree planted in Michael’s memory. It is hard to guess what he would have said about me getting Federal Trespass charges today but I have no regrets. This is our only planet. I don’t want to go to jail but neither do I want to stand aside from what is happening to rob us of peace and a healthy planet. I’m grateful there are others who agree with me on the need to be engaged and are trying to bring about the world we want. In the wake of the Ferguson decision (last evening,) we can see how far we have to go.

Veggie Voyagers

Michael 9/21/2014

It’s two months since Michael died. On September 22nd we celebrated our 12th Anniversary and the steep pitch of dying began in earnest in the late evening. I worked today and had my cell phone set to remind me of the exact time… I had to take a break. I also had to take a break just now posting this photo of how sick he was but how still completely himself and palpable he was in this photo. I miss him very much… he is like an image that dances always just out of reach in my constant consciousness.

This week I posted the last post of the Veggie Voyagers blog (www.veggievoyagers.blogspot.com) which I started in 2007 to document our nine and a half month loop of the US on restaurant grease. I later wrote a book about the trip drawing from what I’d documented in the blog.

The book was never particularly successful due to the high price– printed in the US sustainably with vegetable inks… hardly anyone wanted to buy it at booksellers’ prices but I’m going to try one more time this Christmas season…’will be at Lyon Books on Dec. 7th 2-4pm with other local authors. The book is really a homage to Michael and maybe now people will be more curious or feel sorry for me…

What Michael did with our truck and his consistency, problem solving and commitment to staying off fossil fuels was really outside of anything I’d really ever known to be done before. (Others do it but traveling so long and in so many different environments… never.) He was a most remarkable man… even this acme juicer suspension idea was his own:

Michael Processing Veggie Oil

And when I think back on all the difficult conditions and odd places we found ourselves in… it’s just a wonder. One of the things I always jokingly wanted to do was write a book on the Nine Lives of Michael Pike. Unfortunately, despite all his adventures, he’s gone and others live on and on so his lives got spent even before those of us who lived less fantastically…

Michael on roof of Sierra Club Hut, Mt. Shasta

One more thing I want to share is a wonderful interview we did with Nancy Wiegman on Nancy’s Bookshelf which you can access here: http://kchofm.podbean.com/?s=chris+nelson and if you want to know more about exactly how he processed the veggie oil here is the link to a wonderful short documentary by our friend Mathilde Rand from Santa Cruz Public Television: http://youtu.be/0R7yth6CIwg

With Thanksgiving coming on this week I embrace all Michael was and all that I have lost in losing him but I’m also grateful that he was in my life and we had the relationship we did. Love to each of you in the nurture of all that sustains you.

It’s done

From a young man to a just past medi-care old man this man was my life. It seemed that there were things we didn’t or couldn’t talk about as I think back on our on-again / off-again relationship but there was enough synergy and common bond to keep us tracking with each other til the death-do-us-part thing. I remember after harsh words how we wouldn’t speak for a long time and then just sort of meld back into whatever we had been doing before the argument erupted. Like two streams who could not be parted, whose purpose was to flow and who wanted under any obstacle to flow together.

Today Kathy, Mark, Christy, Vita, Donna and I meditated together for the end of the bardo period expressed in the Tibetan Book of Living and Dying, poorly understood intellectually by anyone. The Tibetans believe by this time the newly dead person has moved through everything they need to do and have gone on to a new reincarnation… I rather hope not judging from the climate change data, but I am no expert on either after-life or coming-life.

In the case of the being who was Michael I asked that any remaining attachments be lovingly addressed from our spiritual heart centers so any remaining help he might need could be given. If he had created suffering in his life, at any time and anyone was living at the effect of it, I asked that it be cleansed. And lastly, that the good he had done, with his interesting and creative life ripple out in continuous waves of helpfulness. (At the end of the mediation I also requested that others who had died since he did be lifted and loved on the wave of energetic goodness we were experiencing.) We could sense great power in the universe and what was him energetically “alive” to all that was available in that place of light, power and goodness.

We also discussed in shorthand about his body… how does the perfectly beautiful person die? He let go with utter mammalian grace his sexuality, his bowel and bladder integrity, his gorgeous face, and his glorious hair and finally his very life, without a whimper or complaint. At each stage he was about coping/releasing in a way that did not interfere with the part of the glass that was still full.. he never seemed to mourn any loss and now he is flying free… no surfboard or ski or parachute needed… no veggie oil to process or truck to fix to get down the road to the next adventure. That “other side” was nothing to fear and it reassured and empowered us to share that.

This is it. I don’t have to observe any particular meditation schedule, light any candles, keep any radio/t.v. off but here I sit in silence. The frig, the light above me.. the bare echo of nothing so that I might write and feel my sadness so I might write and feel the day and all the goodness in it… One thing, I tasted his boney ash… it was salty! I weeded around the little pine where the ashes will go tomorrow and laid next to the tree in the low winter sun. I was helped by dear Orien in putting out a little Michael boutique for his friends to take from tomorrow when we do the waffles.

In all of this I give Thanks for my dear husband. I don’t know what a soul mate is. I have always felt women are like transistor radios. We tune to a certain frequency and stay with it or move to another until we find the right one. It’s never perfect to our own basic tone… so much of me was pitched under what he was and could be and part of me was what he needed to provide his own balance and emotional harmony in the world.. The words Awkward Nobleman came into my mind during meditation and that was about right. I was a bridge to the world for him as he was a bridge to being in nature for me. He was realistic and at home in the physical world–I think he was a logistical genius and on one level I was always, from day one, in awe of him but the relationship never went anywhere until I stood up to him and asserted my own self interests. I guess over time that created some gaps but it also was part of the mesh that loosely allowed us to function together so beautifully.

I love you Mikey and will always.

Day 48

The other morning I woke up with anger again about the tumor marker test (CEA)… after being meaningless the oncologist kept running it and it did go up… why order it if she wasn’t going to use it diagnostically… all that was packed into a stew hour then I decided, you’re wasting time.. consider his features before they dim and become two dimensional so I wrote about every detail. (I was going to put it here but my hard drive is trying to fail.)

I’ve been going to a chiropractor trying to get out of this back pain which has been incessant. Meanwhile life has gone on with today being the last day of the observance of the bardo. The house has been cleaned (Thank you Flora!) and tomorrow a small group of us will meditate in the living room where he died from noon to one pm. On Sunday I will put some ashes out by a little tree he’d been watering back by the swimming hole.

Today I went up to Paradise to visit my ex-husband. I think I mentioned that his wife Dar had died of breast cancer two years ago. He continues badly slumped back behind her loss. I can see the great creative times the two of them had from seeing their home –her paintings, his pottery, her sculptures and their landscaping and plantings:

 

 

 

 

 

 

Being with Watz was enjoyable but also painful.. I can’t help him or help myself but later today I felt some peace and resolve after meditation. Some way that things are shifting for me.. little discoveries about what helps and what doesn’t. There are loopings to grief that seem necessary and some that just seem self-indulgent. Someone said to my neighbor, How come Chris got rid of Mike’s things so quickly? My answer, How would you like a 400 ton albatross around your neck? (It is not a comment on all the stuff M had but rather my ability to tolerate having it just sitting waiting for me to do something with it.) I now feel almost free of the yoke of too much stuff… there’s more of course but I feel like I am where I am supposed to be… except in my low back which hasn’t quite got the message yet.

Tonight

Tonight was another night I wanted to relish the beauty of yesteryear. Last year at Mono Lake. This date.

Michael pumping in veggie oil at Mono Lake.

It’s been a good day. I can’t call it other. I did radio for David Guzzetti, who is facing life threatening liver disease himself… has lasted against all odds and is now waiting for his liver… oh liver where art thou? (Please!)

I love Woody and Friends and was glad the show was well received and each time someone called it was on my timeline to have a little pity party-aside-time.. Kate Wolf and “the Redtail Hawk” (“there’s just some things that need a man’s hand”) and others like that but each time someone would call and distract me from my predilection.. so ok. It was a good morning. Then Jerry and Zenon and I cleaned out Michael’s “barn room” with no big discoveries… that was that, in terms of his clean up… one metal run, one ReStore Run, one dump run and heave ho.. it’s off to manageable history you go. (My aching back speaking, not me.)

Later, shelving something, I pulled out one of my diaries and want to reprint it here. The crisis was the surgery. We thought if the cancer had stayed in the abdomen we’d have a chance…

4/2/13 Waiting Room, Sutter General–

Waiting to hear if M can have surgery next week. This last week, despite efforts to distract and have fun and stay on track has been over-weighted with this laparoscopy. Now my dear Michael is having his abdomen inflated and a scope is poking around and the experienced judgements of Gregory Graves are being decided and when he decides/what he decides will determine the trajectories of two lives. No amount of “I hope,” “I trust,” or “I wish,” mean squat right now– only the truth ala surgeon. What we want/fear carries no weight. All of this is subjective but His subjective based on His eye, hand, brain… more than heavenly hosts of angels… This is the fulcrum. I honor it and feel the tender quaking of its momentum, not knowing the tip of it, not wanting or trusting my mind’s wanderings. Staying in the discomfort and flutter. Finding the silence, where there is no real silence, only by settling stubbornly in the field of waiting. Here in the waiting room.

Impermanence

This mandala no longer exists. The sands have mixed and the elements have separated them. Michael no longer exists and yet at week six I still sit in my chair and cry for him to come back. No master combiner could bring him back. It is a one way direction.

Circumstances of health, independence and beauty change.

The moon rises full, the flowers dance and all are so fleeting and so touching in their bid for the NOW.

My precious husband was like a season, like a day length, like the snow after a storm. I thought we would at least grow old and dry up and blow away more or less together but I’m left here to figure out my aging by myself and so far I’m finding it very intimidating and am not in the least consoled by my process. Too hermetic to ask for help. Too private to talk well. Too physically fragile to do the things I want to do. I am in a state of stasis… as winter’s season often seems the longest I’m restless and have cabin fever already, despite the 75 degree weather and brilliant, sunny days. I’m out of sorts, out of time, out of the will to do anything.

People shift the day

Pula Praiser

The day started off with emotional intensity. The mobile vet came out and assessed that Pula is in sharp decline with the tumor in his chest creating severe respiratory effort. It is his time. The vet will come back tomorrow afternoon and Pula with his sweet face and soft ears will enter memory. It won’t be easy because he is an enormous Pyrenees, not to mention the grief of losing him.

The good part of the day started with a visit with my ex-husband Steven Watson who I haven’t seen for years. His wife also died of cancer. It was two years ago and he is still pretty socked in with loneliness and grief but a very sweet guy who it was good to see.

Watz and Shamus

Then Lucas Ross-Merz came over to pick up his “inheritance.” Michael wanted him to have some skis and we included as many size 13 boots, shoes and slippers as he could carry. He and I joked that he is a Village Nephew and I a Village Auntie since I’ve known and cared about him since before he was born. He is the President of the Sacramento River Preservation Trust and is very busy with the work of defending and caring for the river which is the heartblood of this valley. I’m glad he’ll be back for more Michael ski stuff and a dry suit for kayaking but also to help me sell or move on the wind-surf boards and surfboard which are large, bewildering and out of style. I am grateful!!!

As I was talking with Lucas a sweet little face peeked around the side of the house and it was Josie who we had met in Dinosaur National Monument, Utah last summer. She and her husband Robert Million travel around the world, often in Papillon, their unique vehicle that drew Michael to them last year.

We had such a nice visit gathering walnuts, squash, peppers, lemons, tomatoes, persimmon, chard, basil and oregano for them to take on the next leg of their journey which is Mt. Lassen before going up to Medicine Lake, Lava Beds then to the coast for the Redwoods before heading north. What a tremendous boost to have such sweet people from so far away (France) come to call.

My last completely wonderful visit of the day was with Ambrosia and her 5 month old daughter Ida. Ambrosia and her partner Anthony lived in our house while we traveled last year. I think Ida may have been conceived here which is a sweet thought since she is so delightful.

It was so good to have a lighter spirit today. I also appreciated all the response I got about cancer care and health care in general on facebook after the last post. It gives me ideas. I may not get far with them but maybe the discussion will grow and broaden and we can actually help others. That would really give my life meaning after the loss of my dearest Michael.

Call to Action

This morning I woke from my first night with my “husband replacement”… an electric blanket that had me tossing all night… things used to be simple.. I just wanted the “preheat” so the bed would be warm to get into but then instead of shutting off like I thought it would from the directions, it went onto Low and I found myself with everything thrown off on the edge of the bed in the night, finally crawling to the controls (His side, Her side!) and shutting the thing off.

My mind is back to the issue of cancer recurrence. At first my mind wanted to write a letter to the Infusion Center nurses and it was a Thank you letter and I thought of candy and a bag of apples to cover both modes of thinking…. I’ll still get that done. But, what my snapping irritated mind then turned to (after seeing the straight Republican sweep of the elections,) was Cancer care itself.

If people would stop with the pink ribbons and the running around tracks and focusing on luminaria and personal grief we could be more like ACT UP and get some change going. I’m really thinking about local care providers and ours in particular. There is nothing I can do about her because all she was doing was the Standard of Care. Just like in the “AIDS Epidemic” the drugs weren’t working. Even in my little pee brain I can “see” ways Michael’s life could have been extended.. I’m not talking a CURE for Cancer but using currently available technology and logic better as well as maybe a little creativity and risk.

June 2014

So the tumor marker test (CEA) stopped being effective for his cancer and CT scans give off dangerous amounts of radiation, test your kidneys and are incredibly expensive and can’t be ordered too frequently… what about ultra- sound? Correlate CT findings with ultrasound and use it every two weeks to determine effectiveness of treatment. NEVER wait for arbitrary dates on a calendar… “we will get a CT scan after week such and such (of the chemo agent.)” That puts the patient on the cancer’s timeline. You have to stay out in front on this disease!!!

Next mistake… Hope in clinical trials. If you only have a Phase 1 trial available to you and therefore are looking only at safety and dosing what do you have? We didn’t really comprehend the differences and maybe could have gotten into a Phase 2 trial if we had started sooner in considering it realistically. It is hard to know what should be the “fall back.” Local docs don’t stay up on this .. the vagueness and lack of a working relationship with researchers puts it on the patients to do all the work and it is probably the most confusing web of “what do we do?” there is. Investors have a better handle on new cancer drugs “in the pipeline” than practicing physicians do.

July 2014 (No he didn’t drink the whole thing.)

Example of how connections and referrals go locally, if you are lucky: Dr. Matthews, who I love, put in Michael’s port– the central IV line for his chemo that served him the full two years. I was reading about appendiceal cancer and the cytoreductive surgery with heated intraperitoneal chemo and sent him articles (yes, he gave me his email.) He talked with his friend Dr. Maj in Paradise who knew Dr. Graves in Sacramento and that is how we got the surgery lined up. It’s also how we met Dr. D’Andre the oncologist who works with Dr. Graves there at Sutter. If we had depended on Dr. P., Michael’s doctor, Michael would have died probably in late winter of 2013 because she never moved an inch out of her comfort zone and she’d gone to school in Nebraska and didn’t know any of the “local” resources. She was impeccably “book cancer” but cancer doesn’t read.

The other doctor we loved was that Sutter oncologist, Stacy D’Andre. This was a woman who pulled us out of depression on more than one occasion. She gave us options and made us feel there was a next step. The last one we couldn’t quite grasp (because the cancer got too far into the liver at the end) and that is what my mind dwells on oh so very painfully. However, she was going to give Michael a novel therapy based on the genetic testing of his particular tumor and what the tumor was sensitive to. Our local doctor just thought that was terrible… it’s for breast or stomach… Her mind ended at the two approved colo-rectal cancer cocktails FOLFOX and FOLFIRI (which Michael’s tumors became resistant to.) She left us with no hope and no options. Nice lady and very kind but NOT someone I’d recommend if it is your life in her hands. Cancer shreds everything. You have to Fight and not be so worried about local Standards of Care and stolid time lines.

One of the Infusion nurses said to me at the beginning of the journey that I had to become an expert in his disease and I had to do active case management. (i.e. You don’t wait for them to call you, you call them and you keep on them because to them you are just a “patient” and being patient does NOT work for either buying time nor finding a life long remission from cancer.)

The other little secret and I know you know this, Cancer rates are rising and the system is over-whelmed. The infusion center in Chico is wall to wall every single day with patients. There aren’t enough nurse navigators (there are only nurse navigators for breast cancer patients,) nor a real commitment to follow up– Enloe laid off Registered Nurses in the oncologist offices and replaced them with Med Techs who just don’t have the training to have developed their critical thinking skills which nurses have.. they just take direction.

I guess where I am going with this is we need people to come out from under their isolation and grief and fight for the people who are going through cancer treatment NOW and for those who will get the diseases of cancer in the future. The American Cancer Society doesn’t even offer travel to treatment financial support anymore… many will be trapped in this local situation where the local situation is good but could be many times better. (Another person we loved was a nurse called Ed who, in the beginning, felt like our own personal angel she was so attentive and so knowledgeable and worked to help us learn how to connect the dots in such a loving way.)

August 2014

As I wrote before, I’m proud to be a nurse not from a personal point of pride but because we are bridge builders and we need a bridge out of local control of the cancer treatment continuum or else to find a way to make it better which is hard because cancer IS complex and we don’t know more than the docs and they are just defending themselves with this Standard of Care, which is understandable from their perspective. I only know one little piece which was our experience and the ways we had to struggle for Michael’s life. (The nurses in the trenches of patient care can’t help either because they have a fixed role and it is non-stop but they are experts in what they do and I will weep tears of gratitude for them now and in the future for the attention and kindness they gave my dear Michael throughout our time at the Cancer Center. No candy or apples can ever demonstrate my appreciation for their goodness.)

I’m glad to be able to share this Call to claim the cancer care continuum even if it is a little befuddled and under-developed and probably won’t go anywhere because my energy is so very low right now. It is too important to leave to the Doctor Knows Best of traditional medicine. (The doctor DOES know best but which doctor and how do I find her/him and when do I fly the local nest and get us to that more knowledgeable doctor with the more creative options?) I have grave regrets about the period between August and September and wish I could have been more prescient and worked harder to get him down to Sutter sooner… it was the only hope we had.

September 2014, about three weeks before death, loving his new Veggie oil processor!

Finally home

I just got home from a long day of clinic NP work. I thought I couldn’t do it with the sciatica that even kept me up with pain in the night but time actually passed (slowly) but with much less pain than I thought I’d feel. I love doing women’s health and have been able to be an NP on and off since 1983. For a long time I did hospital nursing and some of it was concurrent to when Michael and I first lived together. He did night shift but loved when he could come home and report he’d learned something new.

When I got home, after dark had taken hold, poor Selkie was in the driveway to meet me but mail had come with a lovely book called Healing After Loss, Daily Meditations for Working through Grief by Martha Whitmore Hickman sent to me by the sister of my land partner who lost her own “Michael” six years ago, also to cancer.

I instinctively turned to November 4th and reflected on the quote… which asked “.. can we mobilize ourselves to walk, made courageous by that light within?” This period is really turning me inward into the silence which surrounds me at this and most moments. It’s not that I am always “in listening” but it is here I feel like I can listen if there IS something to hear. I’ve turned down all social gatherings and have only gone to two very important political events. I’m feeling like the reclusiveness will be hard to shake off once the 49 days pass… like I’m using the period in some ways as the external shield so the closer up shield against how others approach me with condolence won’t have to be deployed in a crowd. I can easily be with one or two people at a time but have no desire to go out… have avoided the Farmers Market, Chico Natural Foods, the Peace Vigil… I also seem to care less about what is going on in the world and around me… like elections today. This is the FIRST time I haven’t been involved and of course, the first time Michael hasn’t been involved.

I want to get back to Michael… his diagnosis was followed by a port placement and the decision to start his chemo right away. We were both terrified I think and it was Christmas. We often traveled and I let everyone know we were out of cell range because I didn’t want to ruin their Christmas as ours was so traumatic I didn’t know how to put a good “spin” on it. There was however great light in the nurses who cared for him.. in the few visitors who knew and came. In our sweet bond. When I look at the picture below now though it rends my heart… I just recall the doctor who tried to find the primary tumor kept telling me in transparent doctor code, “He’s been dealt a bad deck of cards, a very bad deck of cards.”

So today’s the day we vote. I’ll go to bed before the returns but always hold out hope our progressive people will win and the good ballot measures will prevail. (Michael was the yard sale King… He’d do yard signs for all the candidates and then go park this little truck in visible locations.)

Tonight none of the photos are behaving so I’ll just finish a piece of the Michael story. After six cycles of chemo he went down to Sutter for a hopeful surgery (cytoreductive surgery with HIPEC AKA Sugarbaker procedure AKA “shake and bake”) to manually remove every visible bit of cancer from his abdominal cavity and then instill heated chemo directly into the abdominal cavity… I’d done a lot of research on it and we lucked out with an incredible surgeon. Michael didn’t sail through it but he recovered quickly and gracefully and without complaint… really. He was an incredible human in his ability to face things exactly as they were without any extra effort spent on anxiety, fear or doubt. (Those qualities I was the receptacle for and always used them to move him toward what seemed to be the best care plan possible even though the gains were always followed by losses..each CT showed progression…)

At any rate, being a nurse, being able to research, “case manage,” trouble shoot and provide direct care are all things I appreciated about both of us… He even took care of me during two health care “situations” this last year one being a planned surgery and one a complication of a procedure.

I sure wish I could tell him about my day today.

Michael on the Oncology floor at Enloe for his first chemo. Dec. 2012

Michael doing ER nursing on Maui