It's hard to believe that I didn't write for so long...but now that I have completed the following summary, I am awed at how much has happened and how busy it has been. I'll elaborate under separate headings later on some of the topics. 4/11/2016
I chose to accept no more chemo for the recurrence after the fourth of the six proposed in the treatment series on January 8, 2015. I began using Protocel, as outlined in the previous post, with great hope it would keep any cancer from returning. As I look back, it is fascinating to review all that has been the past year. My 94-year-old mother went into the hospital in February 2015, just days after my last post was written. It was evident it was highly likely her last round...her heart was down to 10% ability...her declined appetite impacted her dementia...and during the previous 8 months there were several other observation-oriented or fall-injury checks into hospitals. When I got the call from her assisted living home that February morning, I asked she be sent to the least convenient to me, but best for her needs geriatric department at Community General Hospital. It was as though things were unfolding as they should because I had just stopped chemo and began Protocel and I felt blessed I was strong enough to go there daily to provide her advocacy, love and support. I walked into the room each day, unsure what I would find. I had to
take a very active role to see to it her needs were met. I felt very
compassionate for her and figured out ways to comfort her. She was
confused and stressed. The man who had been her companion for the past
five years was in another hospital and she would ask where she was and
where Joe was over and over. I met with
On March 8, my efforts to get her into a loving, beautiful, perhaps best-option, palliative care facility called Francis House came to fruition. A bed opened up and she would be able to go there until she passed away.That same day, I got an acceptable offer on my house! I knew things were shifting. I saw signs and bravely and with as much grace as a I could muster, took one day at a time. She continued to fret over where Joe was and seemed shocked each time when I would tell her he was in the hospital sick. Ed offered to help me to take her to see Joe and Francis House helped us
by lending a wheelchair. Though she was frail and with oxygen tanks, Ed
lifted and I helped maneuver and somehow we got her up to his room and the
two of them sat together holding hands. It was beyond precious and
special to have made it possible. I took pictures and that night I down and uploaded them to the drug stores website and made a collage for each of them and brought my mother hers in a frame the next day
when, sure enough, she began to ask where she was and where he was. She
realized the lovely house I wheeled her around was where she was going
to stay. I was honest.
I look back at the very difficult chapter with mixed feelings...though I hold some precious memories of those last weeks. Of mom's three kids, I was the only one there during the last weeks of her life. I was often very fatigued and emotionally it was tricky. I was making her foods she might enjoy enough to eat each day and bringing them. Her grandson, Brett, who lives in California had arranged to come see her, but his affordable option was ten days out. I was trying to keep her alive for the visit and though I shouldn't have been, I was surprised that she passed away on the verge of spring, March 21, 2015, after seeing Brett two of the three days he came for. The call I got did not say she had passed that Saturday morning, only that she had taken a turn and I needed to come. I was using breathing to stay ok and made my smoothie and coffee to bring along, never expecting to arrive and find her door closed and a nurse greeting me to say she was sorry. Not what I had thought. She had been scared. I wanted to be there for her. And the night before, as I left, she had said, Don't go. I was dropping Brett off to see his cousin and I told her I'd see her tomorrow. I found it uncomfortable for me in many ways...being with her was not the same...the room, gathering the pictures I had placed in her room of all her family...it is a blur and crystal clear all at once how the rest of that life-changing day went. The call I took while being driven home left me trying to contend with selfish nonsense that I would have dealt with differently in retrospect. I was responsible for putting together the funeral. To keep the peace, such that there deep down was any, I postponed the funeral until April 9 to accommodate my sister's insistence on continuing her long-awaited vacation in Florida. The emotional difficulties during the weeks that followed were enormous. It was daunting to meet the church liaison and decide songs, readings, plan an after services luncheon and empty her assisted living apartment out, moving her belongings and making way too many decisions. It was another period of time I was blessed to get help from Ed at some crucial moments. The funeral was very difficult for me in many different and somewhat bizarre ways. I was relieved when it was over and attention had to turn to packing, purging, etc. for the move back to California. Having to shift the focus was good, but I was so, so tired already.
It is rather a blur...I believe, in retrospect, that I cracked more than once under the pressures. The number of decisions to make regarding stuff, take it, don't, if don't where and how to get it rehomed...it was a push-me-hard time. I had to buy an additional 10 days in the house to complete the move-out-work...and I was lucky for the help of Barb, Dan and Ed during this last push period of time. Without Ed's help, I wonder how I would have made it, especially at the end when loads remained. It was a period of time with lots of hitches. Arranging for the stuff to be moved was a huge decision and ultimately, the plan changed just days before the closing/ move out date when packers arrived to estimate and mentioned another option of having them pack into a semi trailer. I ultimately researched and went that route. On the day my load was driven off, the details were not even cinched, because the trucking company was not willing to drop the trailer in my driveway in McKinleyville. I kept believing it was possible, because my load was going to Portland and to get it to Eureka, it would have to pass through McKinleyville. Sure enough, the folks in Portland, once they had the load and we talked to arrange delivery, agreed they could drop it in the driveway! A successful case of not worrying and believing the foreseeable best would unfold.
It was hugely stressful to arrive back at my house in CA and have my adult kids there and so much deferred maintenance to contend with. My daughter was still living in the house and we arrived and then the truck and the boxes and I look back and see that is when I fully tilted. I began not coping well. Ed and I had driven his car here after two unbelievable tales of failed attempts to buy different Prius' we were to drive cross-country in. A couple of weeks later, Ed drove off to return to NY and that same day, I experienced sharp belly pains. I thought it was emotional anguish...but days later, I ended up in the ER in Eureka. A CT scan with contrast showed tumors regrowing...and the stress became insurmountable. I truly did not know what to do. I had no doctors in place. My bf who by now I was accustomed to having help from was gone. I was emotionally and mentally broke down. I felt forlorn. I ended up in the ER a second time in pain so intense it scared me. Despite feeling defeated in many ways, I pushed on most days.
As has been the wondrous truth throughout my life, seeming magic happened. What I wanted and needed manifested. In fairly quick order, I had appointments with both my new oncologist and an incredible (thank-god-she-made-an-exception) integrative doctor. One concern I had was how do I get high dose IV C? I hit roadblocks and felt incredibly vulnerable. In truth, I was unraveling. I had a sort of dependence on Ed, who I had hoped would be my life partner. He was gone. My kids and I were adjusting to my return...and in a very real sense, I was having culture shock. I began using some cannabis oil, reading about it's effectiveness as was possible. I found a cancer support group for breast and gyn cancer folks and was reuinted with Carol (who turned me on to Protocel and is still cancer free as a result) there. It was such an incredibly full period of time in between laying down and being in pain.
In the interim, I called Sue, my Oncologist at the Syracuse VAMC and she told me I had to get myself to Ovarian Cancer Camp in Montana. I listened. It was difficult, though, because I was not making decisions and it took being prodded by my daughter to book a ticket after realizing I was not well enough to drive there as had been hoped. I paid more for that round trip ticket from ACV to MSO than any other...ever! Camp Mak-a-Dream was a fabulous experience for me, as had been touted. I met a bunch of really real, cool, strong women and we all had the same culprit in our life. We participated in activities we wished to...I ended up making some tie-dye garments, a silk painting, and did some woodburning, participated in workshops, met and talked with beautiful teal sisters and watched others do things I was not up to. The smoke from western fires was incredibly thick when I arrived and it was surrealistically odd. For me it was fulfillment of a dream to make it back to the Missoula area where I had the magical experience of my kitty, Om, giving birth to her kitties at the bottom of my sleeping bag in June 1976. It is a gorgeous area...and there I was...but one could not see the views at all...until the last day of camp! The workshops and connections made during camp were rich and worthwhile...though at this time, having news of 3 of the campers deaths has hit hard, too. The highlight of the entire trip, to be honest, was the extra day after camp. Without fully understanding what was going to happen, I booked departure for Tuesday and thought camp was over Monday night. It was over Sunday night...and when Sue asked my plans and I told her no idea, extra day...she shared her own departure of Tuesday and offered me to ride with her in her rental car and lodge with her in her room!!! Our day together was beyond magical. I had been wishing to get to Jerry Johnson Hot Springs since hearing of their wonder in 1975. She wanted to drive into Idaho. What a team we became!! Perhaps I will write the whole tale another time and call it Jerry Johnson Hot Springs. We overcame obstacles, went through trail-closure yellow tape, were lost on the trail, had to go within for strength and guidance...and found the springs and some fantastic women...the memories remain as some of life's richest being on that high road with Sue.
When I got back to my house after the great camp experiences, my 12 year old best buddy dog, Trooper, was clearly not doing well. With his history of skin ailments and antibiotic use, I had realized some time earlier that he might not live as long as healthier dogs...but I had not thought he would pass as soon as it was his time. Within 3 weeks of my return from camp, and after giving him iv ringers daily so he could survive as long as possible with quality of life, I had the vet come and he was euthanized as he lay next to me on my bed on October 1, 2015. I intend to write further about Trooper: the loss of his companionship remains huge.
Within that period of time,
Ed returned for a visit to say goodbye to Trooper. We went to Stanford to the Women's Cancer Center and saw my new Gyn-Oncologist,
Dr. Dorigo, who felt like changing chemo made sense, though we could not
conclude I had become platinum sensitive. I agreed to take his advise.
Doxil every 4 weeks and Avastin every 2 weeks. He cautioned me that
Doxil might not lead to fast response and that my CA 125 might, in fact,
go up before going down. At the time of the appointment in October
2015, my CA 125 was 121 or thereabouts. Ed left again to go back to NY and I fell completely apart at that time. It was set as a bucket list item that I attend my second-cousin, Shannon's wedding in Massachusetts...and just 10 days later, I flew back to NY and Ed and I drove to MA together as had been planned. The wedding was joyful and beautiful and I feel blessed to have been able to make it. The day after the wedding, we enjoyed an off-season cursory excursion of Cape Cod. We walked a distance in sand dunes and the next morning I experienced a cruel knee lock-up that put me in screaming pain and likely scared us both....it seems it took about a half hour to unlock and I used extra care thereafter. I still do to some extent. The blessings continued as my dear cousin's other daughter who I love dearly, Molly, gave birth to her first child in Rhode Island. I got to hold precious Rosalie before driving back to NY to Ed's. Ultimately, I had further emotional problems leaving NY to return to CA with no plans for us in place. Ed had initially told me he would come out and help me through 5 rounds of chemo, but pulled that offer and instead offered me to come back to NY to undergo treatment there. There were many reasons that offer just logistically could not work. I asked for help crafting a workable plan, but there were no offers. I will reflect on relationships and love and my understandings of such in another post.
I was quoted $2,000 to access my port at the local ambulatory
infusion center and told no coverage via insurance for IV C. So, my
integrative doctor acquired the University of Kansas protocol for
administering high-dose IV Ascorbic and ordered supplies. By the time I felt all ducks were in order in mid November, 2015 (Vitamin C infusions were in place & enough was together in the home and externally that I believed I could possibly care for myself), the CA 125 was up to 511. Imagine my delight when after the first round of treatment my CA 125 plummeted to 34! It was just before Christmas and I was afraid to accept it as an accurate test. By the time I was ready for my third Doxil treatment, my CA 125 was 24 and I knew the treatments were really working.
At some point in September, I was referred to the local palliative care doctor's practice. Resolution Care had me first meeting with Kat, a woman who I have much respect and love for. I met Dr. Fratkin first via telephone call, then video conferencing and we subsequently met at my home, where all visits take place. Dr. Fratkin's words were, in fact, the catalyst to me making the decision to begin chemo. He told me that, "Ambiguity is the biggest source of self-imposed suffering." He saw me as making a decision that would have me on a path where I would regain my health and vitality. Wow. I needed that kind of support in a very serious way. The practice has brought me a wonderful healer, Melissa, who created me my own guided meditation cd that has been a tool I will be turning to more. Nikki, their wonderful social worker, after helping me to create goals, helped me to begin the process that got me to claim my space and unpack my boxes into the then barely walkable living room. She, then Kat, came and helped me get the momentum going, discarding cardboard for me, helping move boxes, unpacking and placing decor, etc. I paid someone trustworthy and the huge living room was painted, ceiling too, and before Christmas, during a 2 jam-packed week period of time, about 50 boxes were unpacked, integrated and the holidays were spent in a clean, feel-good house!! This segment of reclaiming my home in a more complete manner (kitchen, baths, and my bedroom were done) was huge in it's impact on my well-being. To that point, a full 4.5 months after arriving, so much was undone in my house. It was discombobulating as there was painting and there were repairs to be tackled. My son was able to contribute at key points in that process, too. Most recently, Carl, who is a spiritual advisor at Resolution Care has come to help me work through some of the inner work I am doing during this period of trying to get better and disappointments and loss upon loss.
As for actually coping with my health and the chemo infusions, some of the things my integrative doctor got me doing made a world of difference. I take systemic enzymes and probiotics and have not experienced any constipation since doing so and throughout the Doxil/Avastin chemo. I use cannabis and had no need for anti-nausea drugs at all. My gut quit hurting soon after I began using Acacia powder. In many ways, this last chemo regiment was far easier than the previous two had been...and it had to be, in truth. I got a ride to my first chemo, but thereafter, handled the transports myself with two exceptions. My daughter, Hannah, helped often by dropping by, building fires, buying food and more. My son chipped in in other ways. I had some visits, but mostly from one friend. I was strong and brave and busy trying to get myself well ...for going to infusions that last two and half hours twice a week has been work, particularly alongside twice a month Avastin infusions and monthly Doxil.
A vacation-like break got inserted into my ongoing routine. After weeks of sparce communication in December and early January, Ed and I used Skype. Seeing each other, so to speak, brought good feelings to each of us. Soon thereafter, he offered to fly to meet me the day after my return visit to Stanford for follow-up with Dr. Dorigo and I accepted his offer to vacation with him to the Southern California desert area where it was already getting hot. Simultaneous to the offer, the Vitamin C the doctor was ordering was temporarily unavailable and I postponed the upcoming chemo one week. The trip was really great...seeing him again, spending the first night together at Sycamore Springs in Avila Beach, then going to the Indio Hills to a 3 room B&B Inn with its own hot mineral spring water pools for us to enjoy each morning and night...wondrous! We went to Joshua Tree NP, then Thosaund Palms Oasis...took the tram up Mt. Jacinto...and walked and walked. We spent one night in Palm Springs itself, then a different Hot Spring motel in Desert Hot Springs. We took Highway 1 up from Morro Bay to Monterey where we spent the next night. With few exceptions, the trip was just lovely. We returned to my place and were together 9 more days before he flew back to NY. I was my bravest self and told him I really want him to give us the opportunity to spend some months together here at my place. I am committed to following the high dose IV C protocol and it means keeping twice weekly treatments going a year after chemo.
What I left out in the last paragraph is how tired I was when I returned from the trip. Yes I relaxed in the mornings and evenings when we lodged with hot mineral waters that were wonderfully refreshing. But I hiked. Sometimes several miles. I lived! And I pushed myself very hard, in part to be all I could for my bf. I returned and had to seek treatment for what was apparently a bacterial infection. There was a big scare, because one gland in my upper neck was enlarged and hardened...which prompted another CT scan of that area. Luckily, it was not a new cancerous growth as was feared. But that meant antibiotics and the repercussions that coincide, though I learned of using 1/4 t. baking yeast twice a day for keeping the gut somewhat more alive during antibiotics. The infection and lump further postponed my chemo treatment. My last chemo was February 29, just days before Ed flew back.
Several days after Ed left, I had a distinct message come to me. Now this was right around the one year anniversary of my mother's passing, and there had been quite a few things...she had come to me for moments for about 5 days. The very last time, exact date unknown, my friend Casey was in my room visiting with me. Mom's voice was loud and clear and it was as though she stood right there and told me: "I'm coming to get you." Given my mom's way of being, I took it seriously and felt a couple of feelings at once, besides shocked. I felt scared that I would not be able to get to Italy, be with Ed or have more experiences with this life and I felt angry that she would be that selfish as to want me so soon. I did not tell Casey a thing that night, as I wanted to mull the message over without an exterior perspective weighing in.
Two days later, I began to develop mouth sores that
caused agony. I saw myself as reaching a saturation point with the chemo
regiment. It came on suddenly and made eating and drinking painful. I suffered. Kat brought a special mouth rinse that did little, the
integrative oncologist thought it might be thrush at first and I tried
lozenges for that, then the Resolution Care nurse (another sweet person)
called and she picked up a special mouth rinse made of coca derivatives
that cost nearly $100. It numbed everything like a dental visit x 10
and when I came down from it, I felt sickish. Still, it offered some relief. I said no to the next Avastin treatment and ultimately, when I
went back to my oncologist the day Doxil and Avastin were next scheduled, I told him I felt I am done with chemo. I
explained that finding myself agonizing with mouth sores, having heart
palpitations (new since the last chemo) and not having the support I would need to continue if more
agony would accompany chemo helped me to realize its time to say no
more. I have had 20 chemo infusions thus far from Jan 2013 through February
2016...a lot. The high-dose IV C has been hugely helpful in that I have no
neuropathy. After attending Camp-Mak-a-Dream and talking to others who
have used the same chemo, I am convinced the IV C infusions are the
reason I am doing as well as I am in this journey with ovarian cancer in terms of few evident residual effects. But a body can only take so much chemo before the side effects would begin to color life.
I do not wish to be in that situation...becoming unable to reach any
more dreams due to chemo side effects. The oncologist asked me some
questions about my relationship. I felt he was again prying, though Carl
has helped me to realize that a good physician will want to know the
level of support you have and your emotional well-being, as it matters. Carl told me what I knew in my
gut and have mentioned before: those with loving support and nurturing fare far better than those
without. It is proven in study after study. My oncologists inquiries
were with reason other than some degree of curiosity. The day I saw my oncologist, was after I had again reached out to the man who I have loved for the past 3 plus years and I asked him if he could please come back out and help me through. The conversation did not go as I wished, I began to get sad and I felt desperate. I noted how well our recent time together had gone and our mutual love. I asked if he knew I was dying, would he want our trip time to be his last memories or would he want to come make more memories and offer support. I hated the answer I got. The conversation went crooked from there...as I was coming from a very hurt place. We hung up both feeling poorly. I tried articulating super clearly with email and apologized for using names like coward and selfish and explained I had heard my mother's voice, that I was scared, that he had once offered help and now I needed it and how much value his help and presence has had. I know in my heart that I followed up with a couple of clearly written emails thanking him for what has been and explaining what his support has meant and that I have bravely been real, raw, honest and sincere.
My next problem, likely triggered by the anxiety and uncertainties and stresses, has been a very itchy area on my back that began mildly irritating and grew worse over about ten days time before I asked my friend to have a close look at it, and her face looked horrified when she did. We put a few drops of Solvarome, a French herbal oil blend, which seemed to provide some relief. My integrative doctor diagnosed it as shingles! It has been a difficult and somewhat painful additional problem to contend with now. I am currently taking Valcyclovir for treatment. The new vulnerability had me reach out to Ed yet again after another period of time with no communication and he thanked me for doing so. But during the call, I stated I needed to and wanted to make plans, told him of needing to get back to Stanford, mentioned Italy, which was a trip we had loosely planned and Ed said he was not making any plans. It made me feel we have nothing more to say. I have asked more of him than he is willing to give. I know with certainty all of this has been incredibly difficult for a man who had just lost his wife only months before we met. In a way, that had been a motivator...I wanted to show him I could and would survive and the dream of us growing together was a piece of that. Sigh. We have been on some incredible adventures and have shared many, many precious moments and many productive conversations. I want to honor and retain the beauty of those. It feels different now, and I'm okay. This and that...and I'm okay. I feel ______ you name it...own it feel it and honor it...then accept it and realize that you are okay. It is a recipe I liked learning at a workshop at Camp Mak-A-Dream.
Yet, after enduring cancer, then cancer, the loss of my mother, the move, the loss of Trooper, the challenges of a recurrence with pain, no doctors, deferred maintenance on the house, and moving in at first on top of my kids, three close-then-distance episodes that culminated with me dealing with the loss of that which could have been greater, my once loving and supportive bf....my emotional well-being has been fully compromised. I have struggled deep and hard lately. I had put much effort into understanding why...why not...but at this point, I feel blessed that I know where things stand in some important aspects of my life. Frankly, the relationship has been hugely important. It was so uniquely hopeful and beautiful. I think that I have learned more about who I am and what I need throughout.
One thing I have grown to recognize is how much edgier I am when I feel hurt. I tilt. I can step aside myself and see how fragility impacts reactions. How self-worth is impacted by others in the vulnerable place that is raw hurt. I feel challenged to maintain the kind of cool I wish to...and fall short to myself and others who I feel hurt by. Is it just too many variables at once, or one too many or to what degree has chemo effected my copabilities? Don't know how one would ever know the answers with certainty. Unmet needs are not generally gained or coaxed by lashing out with words. And at times I have felt very angry. I can feel angry and acknowledge it and find a way to make it pass and realize that again, at that moment, I am okay. It is a one moment at a time period of time...and yet I seem to need plans to look forward to. It is something I am trying to go with. My emerging survivor self...the metamorphosis continues as it must...
Recently, I listened to a medical cannabis summit. At the beginning of this 3rd recurrence, I used critical Co2 oil daily. I had two hospital scans while enduring tons of pain back in August and September and the second scan showed tumor shrinkage. I have felt I have not got the guidance to rely on cannabis. I have an arsenal of other tumor growth inhibitors I am doing and will discuss the current treatment path in a post devoted to that, but I do not quite know dosage of cannabis or what ration is best, despite some research. I am in the process of learning more about Dr. Forsythe from the Century Wellness Clinic in Reno. He is an integrative oncologist with what appears to be a wide breadth of knowledge and a great track record. My correspondences with his office to date have me with a welcome brochure learning that when a person comes for assessment and treatment from afar, they need to plan to be there 3 weeks with cooking facilities. That seems appropriate, but will be another hurdle for me to figure out. I have thought of getting myself another rv and it may be the time has come. I feel hopeful, though I know little so far.
I am a mostly optimistic but have been falling into pools of sorrow and woe from time to time, and at those moments I can feel utter despair. The moments grab hold of others, a chain reaction of sorts, but they are experienced and then they pass. I am re-gaining strength and am now beginning to be comfortable looking ahead and beginning to plan the things that I had hoped to plan with my bf. The trip to Italy stands out as one I cannot let slip away because he changed his heart. I strongly want to get to the village mom is from and the area dad is from...and need to figure out when, etc. After the integrative oncologist and oh, yeah, after getting back to Dr. Dorigo at Stanford who has received the Foundation One analysis of the genes of the tumor material removed December 19, 2012. There is more information there to be used in crafting a targeted therapy other than chemo.
And for now, I'll continue infusing with high dose IV Ascorbate or Vitamin C twice weekly, 75 grams over 2.5 hours, eating a cleaned up diet, taking supplements, including Coreolis mushrooms and looking to alleviate as much stress as I can, have as much loving time with family and friends as possible, be around that which brings about joy, listen to music often, dance, laugh...enjoy the wonders of nature. I hope an integrative oncologist can give me guidance on cannabis oils and help me to determine if taking a break from Vitamin C therapy for three weeks to go to Italy would be detrimental...I end up with a spinning head seeking balance between accepting all the good of what is now and reaching the big goal that I put off twice and have been advised twice by oncologists and a couple of dear friend advisors to go ahead and take that trip while I am well enough. They were not integrative oncologists who fully understand what I am doing with the high dose IV C and I keep thinking I am going to truly get past ovarian cancer and get a lengthy remission. Gotta wonder about having the given middle name Hope.
I've shared a lot. I hope this catch-up suffices to bring the reader up to snuff on what obstacles I have had to work past to get to this point. Yes, I'm tenacious. Yes, I have been foolish. If life were a twist a plot, I'd likely go back to a couple of junctures and make a different move. I still hold a mostly strong will to live and a zest for life. I recall all of the adventures of the past few years that I cherish and realize that I was as gleeful as a child with a new toy...I felt my own emotions of happiness...and can do so with or without a partner in my life. May this perception filled with strength remain. May I continue to find out ways in which I have made some small difference...some means of knowing my time brings something good to others...and may I get to the point where there is no evidence of disease. Amen.
