Personal Update, February 2019

February 20th, 2019

I’ve emerged from the gauntlet of 2018 rearranged in some ways, transformed in others, grateful and happy to Be! I’ve missed being in contact and feel regret for not being more inclusive through writing sooner with an update. So many of you have generously inquired about how I have been and how I am. I am grateful for the constancy of your caring.

Early July, when I had my surgery, seems so long ago. Subsequent events have unfolded at a rate almost beyond comprehension. I am just now gathering myself enough to attempt to summarize.

Although I have been primarily out of sight and out of communication, I’ve held y’all constantly in my heart. Your faces, your voices, your gifts and messages through cards, letters, emails and cyberspace accompany me throughout my ups and downs. I sense being held within a magnificent field of caring that is valuable beyond measure. I am brimming with gratitude.

Maneuvering through the complex twists and turns of this cancer adventure has been all-absorbing. Keeping in touch with family and friends has fallen into the background more than I would like.

Finally I am sitting down at my keyboard to reach out and attempt an update. One of my motivations for writing now is that I am at the threshold of shifting into a new paradigm where my focus is expanding beyond absorption in medical issues. And, I have some medical challenges remaining active, which I intend to fill you in on, below.

Short (hopefully) Summary of Past

In March of 2018, I was diagnosed with the second breast cancer, this one even more rare than the initial breast cancer I had been diagnosed with in early 2017. I had just completed the chemo targeting the 2017 cancer and was still in the process of recovering. Prior to this 2018 diagnosis my assumption was that the partial-mastectomy I underwent in May of 2017 was me being done with surgery. Not so. I was still only part-way through my one-year course of Herceptin, targeting the 2017 cancer. This treatment required me to travel to and from Gabriola Island to the Chemo ward in Lions Gate Hospital, North Vancouver every three weeks for a year so I could receive it intravenously. What I experienced lying there in that ward throughout the year is another topic altogether.

2018 Vision Vaporizes

The new diagnosis of this second cancer in March 2018 threw a massive wrench into what had been my exciting plan for 2018 to be my year of recovery and rejuvenation. Instead I launched into a fresh series of doctor consultations and a multitude of tests, requiring hours and days of travel to and fro between home and Vancouver. Yet again I was faced with conflicting opinions about the best course of action. With this cancer I was more physically uncomfortable than the first time. I found wrestling with my decisions in the face of disagreement amongst my medical team to be just as daunting and fatiguing as dealing with the cancer itself. The symptoms had actually begun soon after the May 2017 partial mastectomy and it had taken until the spring of 2018 for the doctors to determine a clear diagnosis. I felt myself wearing down. It took from March to July to reach a conclusion and agree to another surgery. I was told “you are not in the books,” the doctors had no precedents to draw on for recommending a proven course of action. I was drawn deeper and deeper into my soul’s wisdom as the resource for my decisions.

Sitting in doctor offices, labs, hospital waiting rooms for tests with a wide diversity of other people I often reflected on how horrific and sometimes tragic it must be for those trying to find their way through the bafflements of the system without being fluent in English or too shy to assert themselves. Fortunately I was beyond blessed with caring, phenomenal support from family and friends throughout and kept my spirits up for the most part, living with abundant gratitude and even amazement. No other experience in my whirlwind of a life has proven to be so astoundingly paradoxical—dark nights of the soul accompanied by bountiful gifts and moments of grace.

Surgery and Beyond

My double-mastectomy was July 3, 2018. At that time I was still continuing the course of intravenous Herceptin every three weeks in the Chemo Ward at Lions Gate Hospital.

I was only in the hospital overnight with the surgery and have just a vague recollection of the bizarre discomfort I felt as my brother Jim and sister-in-law Barb got me back to my island home. I will be eternally grateful for my friend Nicola who insisted on staying with me and tending patiently for the following six days, and for the presence and remarkable support of the amazing Gabriola community of friends that rallied around.

Once home, a journey of a whole other nature began. In addition to the already challenging surgery aftermath, I began to experience intense, relentless, widespread nerve pain that no pain killer relieved, despite trying several varieties. This excruciating pain was nothing like I had ever experienced. Painkillers were causing me to feel horribly ill and not offering relief. It would be a few months before I could finally lie back or lie down without intensifying the pain. I slept propped up in my bed. After teetering on the edge of my sanity for what seemed like forever, I called Wayne Dodge one Sunday morning and he suggested medications to ask for from my doctor, which I did. Anti-seizure medications slowly began to give me enough relief that I could begin to rest. I stopped the painkillers right away. The combo of anesthetics and painkillers had been toxic to my body resulting in a couple of weeks of radical detoxing. I was so ill that I had to cancel the teen workshop at Strathcona Park Lodge I had so ardently wanted to lead. Facing the reality of this drastic, unprecedented limitation was a monumental learning in genuinely surrendering to what is.

Compounding the impact of the nerve pain, movement of both my shoulders and arms had been seriously compromised beyond what was a natural consequence of the surgery. The only explanation offered was how my arms had been positioned during the surgery. My range of motion was extremely limited, each movement painful. In addition to not being able to lie down I simply couldn’t find a comfortable resting position even for my arms. Marvelously, at the same time, I was abundantly blessed with the wonderful community of friends that were being my arms for me, and continued to be my arms for several months afterward.

By early August the anti-seizure meds had begun to ease my nerve pain enough that I could muster my strength and be present for co-leading the Youth Leadership and Teens Alive workshops at Haven. I had been learning to live with pain and carry on anyway. The invaluable support of those around me combined with my passion for this work and love of the remarkable young participants enabled me to adjust to the painful and restricted movement of my arms and unusual level of fatigue. Not only has this adventure been a transformational practice in surrendering to what is, I have a fresh appreciation for the joys of loving, life-enhancing relationships, and the power of intention.

The pain I felt during those few months has been indelibly imprinted within me. On occasion I have a slight degree of nerve pain, which now serves to ignite my gratitude for having made it through the gauntlet and for all the generous support that was simultaneously bestowed upon me.

Grieving

At the time, the constancy of that excruciating, mind-scattering pain obliterated any conscious awareness of the deeper, multifaceted impact of the surgery and what I/my body/soul had undergone.

One exception I recall was late July when I first heard a news report about the grieving mother orca Tahlequah. She would not let go of her dead baby, carrying it with her for days and days by repeatedly nudging it to the surface or pulling it along. Ultimately she kept it with her for 17 days, swimming more than 1,600 km before letting go.

That news ripped into me like a bolt of lightning. I was instantaneously rocked then immediately dissolved into full-body sobbing. Fortunately I live in the woods so I can howl without worrying about neighbors rushing in to rescue. For literally hours I grieved. I wailed for that mother and her dead baby, for mothers everywhere, my mother, my grandmothers, the death of my own son, tragedies and pains of both of my sons, for my motherhood, for generations of mothers, for mothers and children. Momentary respites were followed with fresh surges of gut-wrenching sobs and howls. Just when I thought every ounce of grief and sorrow had wrung out of me another wave would flood through. Holding anything in was not within my realm of possibility, nor did I want to. Yes, grieving and loving are twins. Grieving is also liberating. Looking back I recognize this as one more of the gut wrenching, remarkably paradoxical occurrences that were truly blessings.

Radiation

Radiation was recommended as a standard course of action following my surgery. At our consultation, the Radiation Oncologist gave me a document showing a compilation of statistics that were produced by a computer, based on my original type of cancer. There was no data on the second type and of course no data on the combination of the two types. Throughout the process which had began in 2017 I had yet to fit into a single statistical category. The document outlined potential risks of radiation such as permanent scarring of lung tissue, a temporary or permanent cough or shortness of breath requiring the use of prednisone. Ribs may be thinned. Lymphedema, swelling in the arms, which could potentially restrict arm movement and is likely to be permanent. Shoulder stiffness. Skin changes, fatigue – and so on. Although the risks were listed as rare, I have consistently fallen into the rare category so that was not particularly assuring. Inquiring of my soul through breathing with curiosity I asked “What is the most loving, kind decision for my Being at this time?” I declined radiation.

Some Delights

My grandson Cameron, his wife Kandice and their children, four of my seven great-grandchildren, Kadia, Isaiah, Elijah and Breanna (born in February) came for a visit in late August. I thoroughly enjoyed the delightful and loving time with them.

In theory, September was a month of lying low, although with the continued to and fro between home and Vancouver for medical follow-ups I could have used significantly more r & r, still being fatigued and weakened. Thankfully I was making some progress through regular physio trying to get my arm function back.

Late September I took the precious opportunity to enjoy a wonderful visit with my beloved friend Maria Gomori in Winnipeg.

October Obstacle

Then came October. A year earlier I had booked an annual workshop that I lead on the Big Island, Hawaii for people from China. I love and feel deeply connected with the people I work with and for me it was vital to be there. I was pleased with myself for booking time a few days in advance of the workshop to rest and relax in the luscious aloha land that I have always found deliciously nourishing. I stayed at my friend Robert’s idyllic B&B in the lava flow region that I feel so passionate about. Second day there I was bitten by a cat. The combination of my compromised immune system and the Hawaiian heat and humidity being the ideal environment for life-threatening bacteria to thrive led to me being admitted to Emergency with a rampaging infection. I was in the hospital for six days (a lifetime record for me) receiving their most powerful antibiotics intravenously every three hours. When I was released, they gave me antibiotic pills to take for an additional ten days. Two days in I again had to see a doctor. I was having a reaction to the antibiotics. He told me it was more dangerous for me to stay on them than to go off. By that time my digestive system was demolished and in spite of ingesting powerful probiotics still hasn’t fully recovered. I have now consistently heard from several respected naturopathic professionals that taking probiotics is akin to flushing money down the toilet, and that even the so-called best (most expensive) ones can be incompatible to an individual’s system therefore harmful rather than helpful. Oh my, I am discovering so much the hard way.

Brilliance

The sunny side of all this was the acceptance, the support, the loving kindness extended yet again toward me. My Hawaii friend Robert remained a constant presence during my hospital stay. He brought me supplies, set up an alter in my room, introduced me to the meditations and teachings of Mooji. I had regular phone contact with my son in Nanaimo and my beloved on Gabriola. The aloha spirit that radiated amongst everyone in the Hilo, Big Island hospital was remarkable. (I’d like to share more about that another time.)

*Living With Uncertainty — Steam from live lava flow under the road*

I was extremely concerned about not being out of the hospital in time to lead the workshop that had been booked a year prior. The organizers, Anderson, Vicki and Eveleen drove across the island late at night just after arriving from China to see me in the hospital, which touched me to the core. They compassionately assured me that my health and wellbeing were priority. Participants who had flown across the world for a ten-day workshop with me were well taken care of by them. With their brilliant support I was able to get out of the hospital in time to provide a seven-day workshop, which I believe enhanced my own recovery.

Fortunately I haven’t had any other dramatic medical incident since the cat bite! Now my focus is on recovering and revitalizing.

I’m intending to share more on the state of my union—my spiritual, emotional, psychological state—soon. Health and wellbeing are so much more than merely medical. For now, I will simply outline my current medical status.

Current Medical Status

I am considered cancer-free in the present—with a couple of ‘and’s.’ My oncologist told me that my particular cancer metastasizes rapidly and that if I can make it through this upcoming year with no metastasis the risk of future metastasis will be lower. Resting and relaxing is my prescription. There are regular follow-ups and ongoing tests, although thankfully, so far, fewer than throughout the past two years.

I went off the anti-seizure meds in October and although I experience twinges now and then the excruciating nerve pain has abated.

In October, prior to my cat bite adventure, I had a chest x-ray and a heart CT. The chest x-ray showed a shadow that my oncologist wants to investigate. I am booked for a chest CT scan at the end of February. The heart CT also warranted consulting further with the cardiologist, which I am in the process of doing.

The other lingering concern is the active cancer tumor cell count in my blood. I have had periodic tests since before my first surgery in 2017. The expectation was that after surgery the count would decline. However, it increased instead, and continued to increase until it doubled the initial count. There was a slight decrease after my July 2018 surgery but still considerably higher than before my May 2017 surgery. The results of the most recent test, done in December 2018 showed another increase. This is one more situation, consistent with what I have heard all along, where I am told that my results are unusual and there isn’t an explanation.

I am continuing physiotherapy twice a week for my arms. My shoulders are back in place and although I still have a way to go before I have full range of motion in my arms I am relieved to be greatly improved. Thankfully I was able to haul my water and what felt like a ton of firewood during the six-day power outage at Christmas and came away mighty sore but not debilitated!

My primary health challenge right now is intense digestive distress, which has been going on for several months. As you can imagine, it is impacting my vitality. If you were to ask me how I am on a day when there is a reprieve, I will tell you I am feeling pretty good. If you ask me on one of the frequent days when I am experiencing varying degrees of distress, I’ll not be so sure.

Having now faced two cancer diagnosis within two years, apprehension tends to loom. As I observe myself sliding closer to the diligently lurking quicksand of catastrophe I gather whatever resource I can muster in the moment and bring myself present. I am happy at how well I am doing with that. Gratefully, I have abundant resources: remarkable friends and loved ones, astonishing meditations and perspectives on life I am engaged in developing, teachers, easy access to the stunningly beautiful more-than-human world, my own breath, my own heart, my curiosity and lust for adventure, just to name a few. Through all this my rapport with my soul is deepening and expanding into strengthening my reunion with the Divine, the Creator. I ‘feel’ a broadening perspective on life, I 'feel' my Being actively transforming in my bones, in my cells. My explorations continue. I am excited about sharing with y’all some of the amazing things I have been learning soon.

Speaking of vitality, true to my life pattern I tend to be on-the-go. A significant difference now is that even when I am on-the-go and may externally appear to be living a previous pattern of busyness, internally I have slowed, with pleasure. I am more calm, at ease. I enjoy considerably more rest and relaxation, including enchanted communion with my beloved trees and more-than-human world.

It seems to me that the penetration of the piercing pain and acute shock has come through and out the other side as sheer bliss and expansive joy. Another bonus, much to my sheer astonishment and pleasure is that I am now in a flourishing, intimate relationship!

Over these past two years I have expanded my capacity to live with uncertainty, embrace the unknown and view my existence as an adventure that is becoming increasingly astounding. Amongst a multitude of insights, one is that so many of my questions are unanswerable externally. If answers exist at all, they emerge as I cultivate my relationship with the depths of my soul interweaving with the Divine. I say ‘if they exist at all’ because often looking for answers is focusing into the future, yet when I am fully present the need for answers turns out to be not relevant. As Rilke advises,

“live the questions now.”

This transformative passage is welcoming me into reconciliation with my authentic essence which is calling to be valued, touched, freed, given expression. I live every day now as a bonus, brimming with abundant gratitude.

To be continued . . .

Personal Update, February 2019

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Soul Nourishment & Surgery