Cancer Journal

 

Dear friends, 

Some of you know that I’ve been in treatment for breast cancer the past couple of years. A few people have asked me to share my  cancer journal, so I’ve decided to post it here. 

I hope this might benefit those of you who are dealing with cancer, or if you would like to support a friend who is. We are all unique in our experiences, but the best we can offer is our own. 

Thank you and here it is:

July 11, 2020

 

Journal Entry by Susan Chapman — July 11, 2020

Hi to my friends and family. Today was a day of cleaning house and laundry preparing for surgery on Tuesday. It was less than four weeks ago that I found a lump in my breast, so everything is happened very quickly. I feel really good about my surgeon and have felt very much the kindness of the medical teams that I’ve encountered in the last few weeks. Thank you for thinking of me and I’m grateful that my story can be a reminder of how precious our time together is.

 

July 13, 2020

 

Journal Entry by Susan Chapman — July 13, 2020

Beautiful sunny morning to you. Thank you for your loving support.

For those who might want to know more, here is a bit of a timeline about what has happened within the past month. I should begin by saying that in November 2018, I had a normal mammogram.
A month ago, on June 14, I felt a lump in my left breast. I knew right away it was cancer. My doctor confirmed it a couple of days later after a mammogram and an ultrasound. What we knew at that point was that it was a 2.2 centimetre ( 1 inch)  Invasive ( spread beyond the duct) Ductal Carcinoma (cancer).

The following week, on June 24, I had a needle biopsy but didn’t get the results until July 3. My doctor phoned to say the tumour was `triple negative`, a very aggressive and hard to treat cancer-type. I was shocked. Only 15-20% of all breast cancer is TNBC, and the women who mostly get that diagnosis are much younger than I am.

Since then, things have been moving quickly. My doctors have been advocating to get me to surgery ASAP, and it will happen tomorrow. Once they test the lymph nodes, during surgery, we will have an idea of how far it has spread. So that is the next report I will be anxiously awaiting. Regardless, the chemo will begin in about a month.

In the meantime, this has been an excellent time to meditate on the beauty, fragility and transparency of life, and to be nourished by the flow of kindness that passes from one person to another in so many simple and meaningful ways.

With love and gratitude to you, susan

 

July 14, 2020

 

Journal Entry by Mary Gillis — July 14, 2020

Hello everyone,

This is Mary, Susan’s sister. I’m so touched by all the love and warm wishes for Susan. In case you are waiting for an update, I just spoke with the nurse and she said that Susan is in the recovery room, and it will be a couple of hours before she will be discharged. I have the honour of picking up my warrior sister and driving her home to Jerry, who will undoubtedly be waiting with arms wide open for the love of his life. Thank you for all of your support and care. 💖

July 15, 2020

 

Journal Entry by Susan Chapman — July 15, 2020

Good morning dear friends. Thank you for all your prayers and good wishes. I really felt bathed in love yesterday and the glow continues this morning. The kindness and skill of the many medical professionals I met yesterday was awesome. All but the anesthesiologist were women. If you would like more detail, first I went to nuclear medicine for a`bee sting` injection into the tumour area. Then to radiology for a wire insertion into the second small tumour that the surgeon needed help finding. Then back to my curtained pre-op bed where I had some time to stand up and do Lujong exercises, feeling quite joyful. Then the surgery, which seems to have gone well. And finally the hours alone in the recovery room with my bodhisattva nurse, having a long conversation about the power of compassion. The surgeon removed only 3 lymph nodes, which I hope is good news. Will not get the full report for a while but I will keep you posted. Sending love and waves of gratitude to you for being there. 😘

 

July 16, 2020

 

Journal Entry by Susan Chapman — July 16, 2020

Good afternoon dear friends. I am feeling much better today, although I just spent Too Much time in a password rabbit hole—discovering that I don’t remember my passwords for any of these sites. 😊 But I finally have time to learn how to navigate social media, the hard way. Meanwhile so many people have been incredibly helpful to me in the last few days with good recommendations and distance healing and lots of prayers. I want you all to know how grateful I am and how much I cherish this network of friendship and family. I hope you’re having a good day, pausing to feel Mother Earth’s beauty all around us. 💕🌺🌈

 

July 17, 2020

 

Journal Entry by Susan Chapman — July 17, 2020

Hello again, dear friends. Today I’ve been discovering why Facebook and Twitter can be such resources for so many people. I’ve been intimidated by social media in general because I haven’t taken the time to learn the steps ( and remember the passwords!!). But today I joined “TNBC Warriors”, a private group of women dealing with TNBC and it was very enlightening and supportive and heart opening to get to know others who are in the same boat as I am. Their conversations shifted my attention to chemo, so I’m starting to learn more about what to expect when that phase begins in the next month or so. I still don’t have my full pathology report, so unsure what stage this cancer is, hopefully a 2, possibly 3. Praying not a 4. I will let you know when I know, and when I meet with the oncology team here, which is supposed to be one of the best in the world. I’m also getting out to my favourite drala spots for healing walks. Sending my love to you and thanks again for being there.

July 18, 2020

 

Journal Entry by Susan Chapman — July 18, 2020

Beautiful sunny evening to you, dear friends. This is a sharing of joy and gratitude. I’m sitting here with the cat, looking at dots of rainbows all over the room, the western sunlight shining through our window- crystals. Jerry is outside watering the garden. He’s been so amazingly helpful, I feel incredibly lucky. Today his skill-set includes wound care nursing. The compression bandages have been causing some skin deterioration on my back, so we visited the walk-in clinic and got a prescription for a sulfa burn cream which he carefully applied along with a special dressing. All the while, his humour and gentleness is a constant flow of healing kindness. We laugh easily and often.
This morning I was so grateful to have a video visit with the 13 women from our Casa Werma Retreat last February. We call ourselves Las Viejas, joyful elders. What a circle of dakinis!  After that, Jerry and I went on a drala walk at Deer Lake, children laughing, the trees shimmering in the breeze.
For medical news, I’ll give more of an update after I meet with Bella, my doctor, on Monday afternoon. I hope to learn the full pathology report at that time.  Until then, be well, take care, be kind. ( quoting our public health officer, Dr. Bonnie Henry). Love to you all.

July 20, 2020

 

Journal Entry by Susan Chapman — July 20, 2020

Beautiful sunny afternoon, dear friends. I’m sitting on our little patio feeling a gentle breeze. Wish you were here. Very good news today. I just spoke with my family doctor.  The post-surgerypathology report is in and the cancer is a stage two, with no spread to the four lymph nodes that were removed. Because the size of the tumour is 23 mm it is on the treatment borderline for going on to heavy duty chemo as a next step or just radiation. The oncology team will make that call in the coming weeks. At my age I guess the decision is whether or not the intensity of the chemo is worth it. But I will keep you posted when I hear about that. In the meantime, I’m keeping in my heart all the people who are not hearing good news today. So much suffering in this world, and among my TNBC Warrior friends I see so much courage and shared compassion. May we not waste a moment of this precious life in doing anything other than opening our hearts to our shared humanity. Thanks to you all for being there. Sending love.

 

July 30, 2020

Journal Entry by Susan Chapman — July 30, 2020

Beautiful morning, dear friends. I thought I would say hello and give you an update on how things are going. The day begins with gratitude, feeling your kindness and love, holding and re-reading cards and your messages. The chapters of my life have been so distinct, living in Boulder, Juneau, Cape Breton and now back home in Vancouver. And so many of you have hosted me in your homes during my travels. Now the flow of your friendship feels like all those streams of memories have come together into one river. It is hard to put into words how healing this feels.

The two weeks since surgery have been a transition from a relatively normal routine, where night is night and day is day, into a new pattern of short periods of sleep at night and naps during the day, like a dolphin surfacing and diving. My dreams are chaotic and vivid, as my brain tries to sort out all the changes that have happened in the past two months. I’m taking over-the-counter anti-inflammatory medication as well as arnica and maitake mushroom powder, with fresh blueberries and kale every day. I want to build up my immune system before chemo starts.

Jerry continues to be amazingly supportive, so patient, so funny, so attentive. I have no idea how I would manage without him. The two of us share our little apartment with Ziji, a delightful blond, blue-eyed cat who is always inviting us to see the world through his present-moment mind.

I saw my wonderful surgeon, Carol Dingee, yesterday and she went over the pathology report with me. She’s very happy that the lymph nodes were negative, as were the margins. With TNBC this is really good news, increasing hope for a 5 year survival. I’ve been reading other women’s stories in TNBC facebook groups and they are heartbreaking. This disease often strikes younger women, and the stories of young mothers who learn they are at stage four, with only months to live, eclipses any complaints I could possibly have. My pathology report also identified a problem unrelated to the TNBC, called ALH, atypical lobular hypoplasia. This indicates an abnormal tissue pattern that could lead to a different kind of cancer in the future that would effect one or both breasts. Rather than treating it, she feels we can just keep an eye on it. One step at a time.

The great news for today is that I can begin riding my bike again! We live near an old-growth Douglas Fir forest-park and nothing is more joyful than slowing riding through the trails and bathing in that sacred space. So on that cheerful note, I say goodbye for now. I will check in later after I make my first visit to the Cancer Clinic and meet my new doctors there.
Sending you my love, Susan

 

August 10, 2020

 

Journal Entry by Susan Chapman — August 10, 2020

Hi again dear friends,

Another beautiful afternoon here in the Vancouver area, blue sky, cool breeze. Tomorrow is the big day when I met Dr. Shenkier to learn my chemo regime. I have a pretty good guess what she will say based on the research I’ve done. But today I want to share a great resource that I’ve been able to tap into, called Inspire Health. They are a small non profit that coordinates with our cancer clinic and expands patient support to include a whole-body/ mind/ spirit approach. A cancer diagnosis is the onramp. There is no point when the support comes to an end. Amazing, but true.

I’ve already had a 90 minute meeting with my Inspire physician, Janice– who also leads a weekly meditation group. She deeply listened to me and offered helpful advice, such as the importance of Vitamin D– especially for those of us in northern climates. It has been shown to help build resistance both to Covid as well as Cancer. I pass this along, especially to my Juneau friends.

I’ve also met for over an hour with Jen, an exercise therapist who is building an individualized program  for me to regain some strength, flexibility and aerobic health during and after my chemotherapy in the coming months. There are numerous other classes available through this patient-centred agency, and it is all online, of course. What an excellent example of what can happen when a small group of healers get together with a vision to provide a cradle of kindness, compassion and wisdom! So I feel overwhelmingly grateful to them, and to be here in British Columbia where programs like this– and all our medical care– are offered at no cost.

I am acutely aware of how rare it is to get so much attention, and of the indescribable suffering going on for so many people in other parts of Canada as well as more impoverished countries. The reason I want to share this story is to keep in mind that the impossible is possible when we work together to Inspire and care for others.

On that note, sending my love and gratitude to each one of you and I will check in tomorrow with more news about the next stage of this journey. Take Care, Be Well, Be Kind ( the daily words from our celebrity Public Health doctor, Bonnie Henry).

 

August 11, 2020

 

Journal Entry by Susan Chapman — August 11, 2020

Hi again dear friends,

As you know today’s big event was a person to person ( not zoom) meeting with my new oncologist, so I was very excited to dress up for the first time in months. I went through a couple of outfits, wondering which colours and styles would most please her. I now understand why homebound people dress up even to go to the store. I’m there. Anyway, of course you could have guessed that the first thing the nurse said was to undress and put on a big saggy gown. It made me laugh, like when I noticed I was putting on lipstick in spite of wearing a mask.

So that was the start of my three hour appointment, with Jerry taking notes at my side.  My treatment plan has turned out to be exactly as we assumed, pretty much the standard for all triple negative patients:  four rounds of AC and then four rounds of T( and a G-CSF  thrown in which I will learn to inject myself a few days after each of the 8 rounds, to boost my white blood cells).  ( ACT is Adriamycin, Cyclophosphamide, Taxol.)  I will begin September 1st. When the chemo is done, next winter, I’ll begin radiation, which will be another story for later.

Altogether the statistics say this regime could increase my chances of preventing recurrances by 30% so it’s worth the effort. In general, triple negative “rogue cells” in the blood stream are very aggressive and tend to cause metastatic disease in the liver, lungs or brain, often within the first few years after the original tumour. But chemo will knock them out, along with other healthy cells that can regenerate later. So the good news is once you pass the 5 year mark, the risk of recurrance is much lower.  I feel so very lucky, and my everyday practice now is scrolling through the TNBC facebook groups, reading the stories of women who are dealing with much more challenging situations.

When we returned from the doctor we got to work setting up our new Sonos speaker, sent be my generous friends from a retreat last summer.   We turned on a classical radio station and –Wow–our little apartment has never been so sound-full! The cat’s ears kept flipping back and forth as he looked around to see where it was coming from. Thank you to Karen and friends for the perfect gift to bring joy in the months to come.

And thanks again to all of you for being here, for the cards and well wishes and just for tuning in. In the coming weeks I’ll tell you a bit more about what else is happening, but I think this is enough for now. So stay well, take care and be kind. xoxo

 

August 18, 2020

 

Journal Entry by Susan Chapman — August 18, 2020

Good morning again, dear friends.

It is another lovely summer day here in Vancouver, a little cooler than yesterday but blue skies, whispy clouds and shimmering trees. Today marks the 5th week since surgery and 2 weeks before chemo begins. I’m well and doing my best to build up my immune system and strength for the next phase of my journey.

I’m feeling anxious about the upcoming chemo. My first infusion, the AC, is referred to as the ‘red devil’ by my new TNBC friends. But that language feels like a set up. Same with the language of war, the cancer battle that is won or lost. Some of my new FB friends are referring to TNBC as ‘the beast’, or the ‘monster’. So my challenge is: how do I train my mind and heart to regard the whole experience as a celebration of present moment survival rather than bracing myself for an anticipated attack? The only time to begin is right now.

In the practice of mindful communication, we work with the way language reinforces our state of mind and heart.  We especially notice the difference between being open, when we feel effortlessly connected to whomever or whatever is in front of us, and being closed, when a communication barrier goes up and even our own body is devalued as ‘other’.  To increase our capacity to be more open, there is a buddhist practice for love and equanimity which I’m sure has variations in the Christian and other traditions. Every day you make an effort to expand the love you have for the dearest people in your life to gradually include strangers and even enemies. As you do this, the barrier of ‘other’ gradually dissolves, along with your personal defence mechanisms.

This practice applies not only to our relationships, but also to situations. We can expand a sense of good-to-be-alive whether sitting under a tree in the sunlight or being in the dentist chair having a root canal. So my intention today is to make this my approach to the rest of my cancer treatment.

True, the whole purpose of chemo is to destroy fast growing cells. And true, I need to restore white blood cells between each infusion. But what if I imagine my body in treatment as being like a tree in autumn, with her leaves, like my hair and other cells, naturally thinning and falling away.  And her energy, like my bone marrow,  hunkering down to the roots. Can I start talking to myself about chemo as a natural process of destruction and preservation of energy, without resorting to the language of a contest between good and bad? That’s my challenge.

So my plan is to start re-envisioning with this mind/heart/speech training from now on. Mid-August is a good time because you catch a little hint of autumn in the air now and then. The summer grasses have peaked and are beginning to turn. I’m grateful that my chemo will span the months of September through December. The turning of the seasons outside will keep reminding me of this inner seasonal change, seeing the heart of gold, the goodness of being alive in every moment. No good, no bad, no red devil, no beast, just a natural rising and falling, birth and death, my body-dance with earth, water, fire, breath and space.

Thanks for listening as I sort this out, and for being there, dear friends. I’m so grateful for your ongoing support. Please feel free to remind me of my practice if I lapse into complaint….:)

I hope you are staying well, being safe, and sharing kindness. Bye for now.

 

August 27, 2020

 

Journal Entry by Susan Chapman — August 27, 2020

Beautiful afternoon, dear friends,

I’m sitting with the cat in the late afternoon sunshine on our little patio, enjoying the breeze and the shadow-play of the leaves on the table. This past 10 days have felt like the last trimester of pregnancy, busy getting everything ready for starting chemo next Tuesday. We have filled four prescriptions, three for nausea and one to inject a day or two after the infusion to boost my white blood cells. I’m crossing my fingers on that one because I’ve had neutropenia for several years, which is the same low neutrofil (white blood cell) count that comes with chemo. But fortunately my numbers have crept up to normal in the most recent lab tests, so this is another among many blessings.

Last Friday I had an echocardiogram to make sure my heart is strong enough for the upcoming four months of AC/Taxol. I’m sure it is. No results yet. Tomorrow I’ll be at the hospital again to have a port-catheter installed in my chest to deliver the chemo drugs more safely than relying on the hard-to-find veins in my arm. Thankfully my surgery incisions are healing really well so one more cut is no problem.

I am incredibly grateful for the Inspire Health program that offers support alongside cancer treatment here in B.C.. In the past week I’ve had a 90 minute session with an art therapist as well as a 2 hour creativity workshop, and am starting to draw my dreams in the morning, as well as just listen to music and see what visual forms emerge. I feel like my life has turned completely inside out, creating space for all the things I’ve been putting off, especially welcoming the child-play mind. Our gentle, curious cat, Ziji, is a constant delight, attuning me his unique ways of perceiving the world.

I’ve also met with an Inspire exercise therapist who put a 3x per week plan together for me. I’ve been doing some strength building classes on line as well. Jerry and I walk around the lake or ride our bikes to the forest most evenings. The other night, we watched the sunset from the graveyard which is on top of a hill above the lake. We talked about death and some of the details we’ve skirted around in the past. It was really helpful to me to have him listen attentively. No matter how often I say the words silently to myself, there is still this fog of denial around my mortality. Thank goodness for this cancer diagnosis! It is working like a charm to cut through that delusion. I read this recently: ” I asked a woman who is terminally ill, what is it like to wake up each morning knowing you are dying? She replied, ‘ what is it like to wake up each morning pretending you are not?’

A few years ago I accompanied a friend through her final year of life and was fortunate to be with her as she took her last breath. I’m starting to flash back to the memories of walking with her down the street and feeling detached from the lure of all kinds of advertising. Not needing anything. At least not anything material. And no future plans. She showed me the many gifts of waking up to impermanence, like breaking an addiction.

My biggest challenge these days has been a kind of social anxiety. I want to respond to each person– all my friends who have sent their good wishes in all kinds of ways, including cards, meals, photos, music, gifts, flowers and offers of distance healing. But I haven’t figured out a way to do that. So this is a life lesson in letting be. Being flooded by gratitude and love is very powerful, and allowing generosity to come my way is a practice I’m learning to accept. But at the same time, there is so much suffering and loss in the world, and in each of our lives, that I hope this flow of kindness keeps expanding to include everyone.

So let me just say this: I hold all of you in my heart and thank you for being here.

Next week I’ll let you know how the chemo goes. Until then, stay well, be safe, and let the kindness flow.

with love, Susan

September 2, 2020

 

Journal Entry by Susan Chapman — September 2, 2020

Good full moon morning, dear friends,

Well it is past noon and I’m still in bed, enjoying music and allowing my body to deeply rest. Quite a change from my usual routine, especially the past week. On Friday I had a small surgery to install a port-catheter  in my upper right chest. It’s like wearing a pocket watch 24/7, but the pocket is your skin and instead of a chain, it connects to a little tube that runs into the jugular vein. The purpose is to provide a safe delivery of the strong drugs that could damage the veins in the arm. I’m grateful to have it.

Yesterday I had my first chemo infusion of the ‘red angel’ ( A:adriamycin) and the mustard gas derivative
(C:cyclophosphamide). We prepared by spending the early afternoon in a beautiful botanical garden, pausing to trace the amazing bark patterns on the Cedars of Lebanon, and to feel the quiet power of the Sequoia. I took a short nap on Jerry’s shoulder on a bench among tall flowing grasses. Then we left for the cancer centre, and met my nurse, Diana, who was very helpful and efficient. I had prepared to silently meditate during the infusion, but it it was a totally different experience, as Diana chatted and explained each step with both of us. I realized the meditation would be for later, when the effects will be streaming through in my body. This will be ongoing for the next four + months. So I have lots of opportunity.

Later today I will give myself the first injection of Neulista, to boost my white blood cells. I’ll do this (into my belly fat) every second day for the next 10 days.  Then a short pause before having a lab test to see if it is working. If so, my next AC will be in two weeks.

I continue to make it my practice each morning to read the FB stories of other women with TNBC, especially the younger ones who have just learned they are stage 4. I think of their children, especially the teenagers, just starting school. This brings me to a very personal memory that I will share with you. Today is the 30th anniversary of the birth/death of our daughter, Karuna. While Jerry and I got a lot of support at the hospital, able to hold our baby and grieve together, my son Sheehan, age 14, was just starting High School. How does a sensitive young teen in a classroom of new kids handle a socially unacknowledged grief like still-birth? So many losses go unnoticed in our society. I remember one of my clients telling me she’d had a still-birth but needed to report to her job at a customer service desk two days later. And to add one more detail, Jerry’s brother was very close to Sheehan at that time, but didn’t tell him– or anyone– that he had AIDS. He died three months after Karuna.

I share this because the word ‘cancer’ brings a lot of compassionate attention, and I’m so grateful to all of you for this. But please join me in my annual practice of using this day to recognize all the invisible losses, especially the suffering that happens with pregnancy loss, still birth and SIDS. My sister, Mary, specializes in this grief work so I’m deeply grateful to her for being willing to companion women, couples and families through that shadow world.

30 years ago I used the phrase ‘grief-lenses’ to describe the new clarity that broken hearted people have. It enables us to see the burdens of suffering that ordinary people on the streets are carrying around with them. Knowing that death can occur at any moment opens the heart-flow of kindness and mercy. All of you who know grief, which is all of you, I’m sure, know what I’m describing. So let’s make sure to include those awkward young teens, especially boys who cry easily, and offer them protection. A lot has changed in three decades, thank goodness, but we still have a long way to go in making room for the vulnerability to simply be human, and heartbroken.

That’s it for today, thank you for being here. Stay safe, be well and let kindness flow and heal.

Susan

 

September 9, 2020

 

Journal Entry by Susan Chapman — September 9, 2020

Good morning, dear friends. I hope you are finding some time to relax. It is another beautiful, sunny day here in Burnaby.

Here’s a little update. Today is day 9 in my first chemo cycle. I don’t yet know how well the white blood cell booster shots have been working ( I have one more tomorrow), but will have a lab test on Saturday to find that out. If they are strong enough, my next AC infusion will be Tuesday.

I hope this doesn’t sound too strange, but I’d like to share a positive view of the chemo side effects, beginning with the brain fog. For someone interested in mindfulness, these gaps in cognitive thinking are really welcome. My brain literally hurts when I try to follow an abstract concept, such as politics or theoretical ideas. The fog obscures the wider landscape but when it comes to what’s right in front of me– like that snail, hanging upside down in the garden!– things are vividly clear and delightful. I am grateful that I don’t have to pretend to be functional, or be able to hold a conversation. Silence is the best companion for witnessing these changes in my body-mind.

The fog also helps dissolve the habits and reference points that have lost their meaning with the fast-moving changes in my body. What to eat or not eat has nothing to do with fantasies of what I like or dislike. The body can say ‘yes’ to a bowl of porridge one day and a violent ‘no’ the next. My mind has to constantly attune to present-moment-body messages rather than to imagined routines or preferences.

There is a guide-book for this journey in the fog, the “Guide to Side Effects of Chemotherapy”. This is where I find my new normal. Body says: there is a hot painful spot on your gums. Mind asks
“abscessed tooth? The Guide says, ” no, these are mouth sores, to be expected.”  OK.  There is a child part of me that is in awe of how much has changed so quickly. Like the new tissue-thin, silky skin on my arms. Women are adapted to bodies changing quickly, in puberty, pregnancy, menopause, so the experience of ‘whole system’ change is not that unnerving, as long as you don’t mind letting go of everything familiar. I lie in bed with my eyes closed and the waves through my body feel like the Aurora Borealis.

I don’t want to pretend that I’m always on top of this, not at all. Last Friday I felt I couldn’t go another day. But thanks to the flow of change, Saturday brought some relief. And I’m always aware that my new experiences have been lived through by countless others, including some of you who are reading this. Not to mention the other sufferings going on right now.

Speaking of which, yesterday we got the heartbreaking news from our dear friend Margaret Beilharz that the McKenzie River Valley in Oregon was in flames. This is one of the most naturally sacred and beautiful places I’ve ever visited. It is also near where Jerry used to live and fight fires. Margaret’s father build a cabin there which Margaret has developed into her refuge. The two small communities, Blue River and Vida, have been totally destroyed. Margaret herself is safe, but possibly there are casualties we haven’t heard about yet. So please take a moment create some space to feel the profound sadness, grief and fear that so many are suffering due to these fires. Again, some of you who are reading this may also be effected. Everything seems to be changing, the elements are raging. May we all be washed in the cool waters of ordinary kindness.

Thank you again for visiting my page and sharing in my journey. I miss you, love you and please stay safe and well.

The first chemo I received was “A.C.” aka The Red Devil. This was my self-portrait of that process.

September 16, 2020

 

Journal Entry by Susan Chapman — September 16, 2020

Good morning dear friends,

If you are fortunate enough to live in a place where the air is pure, please take a deep breath for all of us on the West Coast of Canada and US who are isolating indoors because of the toxicity of the smoke that envelops us from the fires kilometres away. A painful reminder that we can’t take clean air or water for granted during these dark times for our planet.

It has been hard to give up the daily walks that were my primary connection to the sacredness of our world. But on our last walk, I brought home a small, leafy branch, with an acorn attached, that had fallen from my favourite tree, a magnificent Oak that I feel is the embodiment of ‘mother earth’.  Yesterday, preparing for my second chemo infusion, I placed the branch behind a statue of the Buddha, and revisited a favourite contemplative practice, ‘heart centered prayer, based on the Christian tradition of ‘Lectio Divina’. To do this, you choose a meaningful text and allow one or two words as a gateway from the every-day reasoning mind into the profound, wordless language of the heart. I’d like to try to share with you how this was for me.

The text I chose was from the Shambhala tradition:

That mind of fearfulness should be placed in the cradle of loving kindness
And suckled with the profound and brilliant milk of eternal doubtlessness.

The ‘shimmering words’ were ‘eternal doubtlessness‘ which boggle the rational mind. But before I landed there, the images of my fearful mind, all those parts of my body that have been poked and prodded, radiated and cut up and poisoned in the past three months, were allowed to cry like a hungry little infant who has lost her mother. Gradually the cradle of kindness provided softening, a loving environment to relax and settle enough to connect with the fear, instead of thrashing about. Then, shifting to the words ‘eternal doubtlessness’, letting them arise on their own, repeating silently or out loud, was like a distressed new-born latching onto her mother’s breast. In that timeless moment, there is no trace of doubt.

It is a blessing to drop into that place where sense-making happens beyond anything you can explain. But insights kept flowing, such as the difference between a timeless moment and the ordinary efforts to grasp onto a future as a frozen version of ‘eternal’. And the difference between this kind of doubtlessness and the ‘toxic certainty’ of never questioning our inner experiences.

I realized that this eternal doubtlessness, which only happens in a flash, is what I find when I’m touching the trunk of the mother Oak tree. She reminds me of my mortality, that my life is in the flow of constant change, of birth and death that links us all to each other. Trying to freeze that flow, or to look away and silence the fearful mind is what causes so much harm to ourselves and to our planet.

So with this prayer in my heart, I went to the clinic and received my second AC infusion. I won’t go into detail but will just say that the flashing back and forth from the distressed infant and the soothing mother was somewhat ongoing, but very reassuring. I knew I had to let go of all control, to trust the nurse even though she seemed somewhat distracted. It all went well-enough. And this morning I am feeling fine.

Before I close, I will go back to yesterday’s meditation. After making the journey to my heart, it was time to open up to the crushing grief that my friend, Fleet Maull, was feeling upon learning of the sudden death of his son, Robert. Some of you reading this might remember your own dreadful phone call or knock on the door. It is impossible to imagine this ocean of sadness, but there is a Buddhist practice of opening the heart and , on the outbreath, giving away whatever peace and comfort you feel– imagining it to be pure, clean air. And in exchange, you breath in the instability and fear that Robert might be feeling, as well as the sorrow of his family, as if it were toxic, polluted air. Bringing this suffering into the heart, we keep making more room, not turning away. Sometimes it is the best we can do at times of such helplessness. So please join me in sending condolences not only to Fleet, but to all the fathers and mothers, all beings who are overwhelmed by grief today. May they find comfort in sacred spaces and in the arms of loved ones.

 

September 22, 2020

 

Journal Entry by Susan Chapman — September 22, 2020

Another good morning dear friends,

I’m feeling so very lucky to be sitting out on our little patio once again, breathing clean air under blue skies with a cool autumn breeze. The cat is suspiciously eyeing some balloons from last evening’s zoom birthday party that are bobbing a safe distance away. I hope this message finds you with a sense of belonging and well being during these lonely times.

My update for the week is a slow motion story about losing my hair. It begins with all kinds of pre-conceived ideas that I had, which, of course, turned out to have nothing to do with my present moment reality. Having shaved my head several times  in the past, during my years in retreat as a Buddhist monastic, I tried to wall-paper my anxieties with the bravado of ‘been there, done that, so what’s the big deal?”

To prepare for the inevitable,  I stepped into a Magic Cuts salon at our local mall and asked the hairdresser, Faroozan, to cut it as short as possible. “Shall I use the clippers?” “Yes, absolutely!”. Twenty minutes later, I emerged into the mall with the slightly self-conscious feeling of having transitioned into a gender-fluid appearance, which in some ways I welcomed. But it was a powerful ‘no-turning-back’ reminder. For the next week I came to enjoy the new look, which was still within the realm of normal.

But then, it started to happen. I began shedding hair. And to manage the situation, I began a ritual of morning and evening head-showers, with the hand-held sprayer gently coaxing hair to rain down to the drain-basket in the tub. I would close my eyes until the end, then open to see the furry pile below.
My sister Sheelagh sent me some knitted caps which I now wear night and day. My head doesn’t look so much like a monastic, but rather like a very old man. Little whisps of hair floating slightly above a tender bald scalp.

This is the part of the story that I wanted to get to, but not sure how well I can describe it. I’ve been feeling the whispered presence of my Dad lately, though he died nearly six years ago. He was one of the most gentle, compassionate human beings on this earth. He was a natural healer, a doctor who truly wanted to know the details when he asked “how are you?” He embodied the art of simply being present, in silence, with an open heart. During my Dad’s final years, he was paralyzed by Parkinson’s Disease. It was unbearable to witness his suffering and not know what to do. A few years earlier, my sister Mary and I attended a ‘healing touch’ kind of training taught by a Taiwanese Buddhist master, a woman who’s simple message was the transmission of love through the hands. This became my practice with my Dad. I would simply rest both hands on his bald head, stroking the little whisps of hair, and then holding steady in a deep silence, feeling the warmth of exchange between his head and my hands.

This is where I am today. Not the brave warrior or the devout monastic, but feeling like a vulnerable old man. But when I lie in bed at night, as I stroke my head, I feel his touch, the loving, healing acceptance and compassionate presence of my Dad. I hear his voice, I feel like a new born baby in his arms. Flooded by love and sadness and so much gratitude. This turning point has been really important to me, dropping into a more vulnerable place, symbolized by my tender, naked scalp.

I’ll stop here, and thank you for being here with me.  To close, let’s bring to mind all the elderly men and women in care facilities whose suffering is made so much worse by the isolation of this pandemic. Maybe we can hold out our hands and radiate to them our love and a sense of belonging. May each one of them be visited by an angel from the past who can bathe them in total acceptance and compassion.  And you too.

Sending you love and gratitude,

Susan

 

October 1, 2020

Journal Entry by Susan Chapman — October 1, 2020

Good full moon morning, dear friends,

Today I’m writing from my bedroom, listening to beautiful soft music and enjoying how the cat peeks out through the curtains to watch the world from the ground-level bushes outside our window. I am feeling a bit lazy, waiting for the anti-nausea drug to kick in. Yesterday was my third infusion of AC, and I’m getting more familiar with the patterns in my body’s reactions. Like a new mother getting familiar with the meaning of a baby’s cry.

It is October 1, the second wedding anniversary for my son, Sheehan, and his wife, Summer. They are celebrating the Chinese Autumn holiday by visiting her family on their farm in a small village near the Yellow River. He arrived exhausted after an all night drive from Qingdao, folding his 6 ft 5in frame into the crowded back seat of a small taxi, with their two little dogs on his lap. After a refreshing nap, he called us yesterday and we had a chance to say “nihou” to his father-in-law. It is delightful to have Summer and her family in our lives, in spite of the distance and language barrier.

In my newly found healing time I’ve been absorbed in a writing project as a kind of legacy gift for Sheehan and his cousins. It’s a ‘life review’, not of myself but of my mother, structured according to the 12 year cycle of the Asian calendar. Since I was born when she was 24, we are both Ox. And our year is returning in 2021. She will be 96 and I’ll be 72. I’m weaving the stories she’s told me over the years in in our visits along with the details I already know about her family history. By breaking her life up into 12-year chapters, I’m gaining a whole new perspective of the transformation of her character as she grappled with the ups and downs of her  life challenges. Her story reaches back to the generation before her, and I’m getting a better sense of how families develop resilience to trauma but also learn how to suppress pain in the unexamined forward movement of life’s demands. While writing, my mind is like a detective, putting together my Mum’s story. But on a heart level, I feel I’m tapping into an unspoken well of compassion and truth-telling that has felt out of reach in our relationship up until now. As her oldest child, I fought her head on for much of my adolescence and distanced myself from her for nearly 30 years. But thankfully she stayed alive and well for my return, 12 years ago, and now my heart can finally open. I feel so lucky to have this time to disentangle my own life story and feel my mother’s more clearly.  I appreciate her qualities, her generosity and great sense of humour. She is a master story-teller.  I’m so grateful to finally have the time and heart to listen.

But the other side of the story is that my mother is in a care facility, like thousands of our loved ones. There is a very real possibility I will never hold her hand or kiss her in person again. This is the sober reminder we hear every day, that we can’t count on a tomorrow for those we love and for all that we possess. My heart goes out to my friends, Greg and Joshua, and all the people who’s homes have suddenly been reduced to ash in fires. And to all those who disappear one day into hospitals or care homes, never to return. This sad truth cracks open the heart, appreciating the fragility and sacredness of this moment and those we share it with.  But with every loss there is a birth, a fresh start.  My wish for you is that today is full of blessings and beauty as well as the poignancy of your own reflections on your family stories.  We are all connected if this mysterious flow.

I leave you with a verse from John O’Donohue’s poem, The Inner History Of A Day:

“Somewhere in us a dignity presides,

That is more gracious than the smallness

That fuels us with fear and force.

A dignity that trusts the form a day takes.”

 

Stay well, be safe, be kind.

Much love and gratitude to you,

Susan

 

 

October 14, 2020

 

 

Journal Entry by Susan Chapman — October 14, 2020

Good afternoon, dear friends,

It is a gorgeous autumn day here in Vancouver, with big billowy cloud banks on the horizon and lots of sunshine. I just came home from my last AC chemo infusion and am celebrating with a cup of carrot-ginger soup. In two weeks I’ll begin the next round of chemotherapy, with a drug called Taxol. All of these drugs are the best and the strongest treatment for TNBC, which, as you know by now, is the fastest spreading form of breast cancer. So I’m grateful to be receiving them.

Four months ago today, June 14, I knew nothing about any of this. That evening, while reading a book, I was somewhat mindlessly massaging my left breast when I hit the hard lump. A month later, July 14, an incredibly skilled surgeon cut out the tumour along with sentinel lymph nodes under the arm. Then she passed me along to the medical oncologist who scheduled the chemotherapy regime I’m now doing. If all goes well I’ll be done by mid-December, and then meet the radiation oncologist to learn my next steps. These past four months have been completely full and a steep learning curve.

Last night I paused and asked myself what my life would be like if that miracle moment four months ago didn’t happen. The tumour would be growing and spreading and if discovered too late, I may have been told ( like so many of my `pink sisters`) that I only had months left to live. So I feel very blessed.

I also feel transformed. Each round of chemo brings with it a whole range of side effects that are gradually teaching me how to listen to my body in a new way. Last week I had a very helpful session with the Inspire Health doctor, who showed me how to find the balance we with my sensitive and somewhat traumatized digestive system. Stop the probiotics, they are too intense. Yes to miso, sauerkraut, No to yogurt and all dairy. And for months now, no sugar, alcohol and caffeine It is all very easy when you don`t feel well.

Here is what is interesting as I reflect on this today: I’m discovering that there is a parallel gate keeping process going on to protect my mind and heart. Some inner protector signals me to filter out toxic news, toxic information and negative conversations. And it is encouraging me to let in more and more silence. Silence feels like such a rare and precious resource. It allows me to listen with delight, for instance to the sound of onion peels scrunching in my hand on the way to the compost. Ordinary moments become magical when I let silence in and say NO to my usual distractions.

I’m also letting more people in, mostly strangers in the street Because I sometimes look and feel a bit fragile these days, I’m in step with the people who walk slowly, some of whom are bent over. People I used to ignore, but now identify with. I’m humbly grateful to feel my heart expanding.

At the mental level there is also a gatekeeping process going on. So much change has happened so fast that I find I can catch the self deception in my narratives, and allow hidden truths to shine out. Like my body, it feels like layers of my inner being are exposed and falling away.

All this is because I have the luxury of being in semi-retreat right now. From past experience I know its possible to put up a boundary and not let any outside news in. I’m beginning to taste the sweetness of that memory, but I’m not being that strict right now. It does feel empowering to feel this gatekeeper process happening, to make a choice about what to cultivate and what to refrain from.

One thing that is a big YES is laughter. It is easy with Jerry. We laugh all the time, especially when out walking. We also watch comedies on TV together.

Another thing I’m letting in is light. I’m getting some holiday lights for the bedroom. It’s an old Alaskan habit to light up the indoors from October to February, the dark months.

Monday was Canadian Thanksgiving and I spent time holding each of you in my heart, so grateful for all you have given me in my life, past and present. The only way to hold that much love is to let go, let it flow.

So on that note, good bye for now. Thank you for being here. I hope you and your loved ones are well, safe, and surrounded by the flow of kindness.

With love

Susan

 

October 31, 2020

 

Journal Entry by Susan Chapman — October 31, 2020

Good full moon afternoon, dear friends,

It is another beautiful autumn day here, with Halloween excitement in the air. We have lots of children in our neighbourhood and I love hearing their voices through our bedroom window. This week was a turning point for me, I completed the first part of the chemotherapy regime, the AC, and had my first infusion of Paclitaxol, a powerful anti cancer drug that originally came from the endangered Pacific Yew tree but is now created in a lab. The infusion is long, more than four hours in the `chemo chair`, and the side effects are different, more neurological. When my oncologist described this regime to me she paused and leaned forward, saying `about half of my patients tell me that on days 3 and 4 they feel they’ve been hit by a truck`. `Fatigue?` I asked. `No.. PAIN.. all over your body`.

I had the strange thought that having cancer means I should be able to expand my capacity for pain. Maybe that admission nudged me into the vulnerable group, because sure enough on day 3–yesterday—the pain arrived, like a predicted internal weather system. It began with burning finger tips, then spread to all the joints of the body. Finally it became just all pervasive discomfort.  Yes, hit by a truck.  I am feeling humbled, realizing that instead of expanding my capacity, pain narrows, slows, limits. My heart goes out to those who live with chronic pain.

My doctor says this will pass soon and, while there may be more long term neurological problems with this chemotherapy, most people tolerate it well. So on that positive note, I’m heading outside for a slow walk on this beautiful day. Sending you all my love and gratitude for all your support.

May the pain, both physical and emotional, of all people and animals be comforted. May all be protected from viruses, from disharmony and cruel speech. May all find refuge in peace and a culture of kindness.

Bye for now,
xo Susan

 

 

 

 

November 23, 2020

Journal Entry by Susan Chapman — November 23, 2020

Hi again, dear friends,

It’s a rainy day here and I’m sitting in front of the fireplace, contented and relaxed. I hope wherever you are that you are safe and staying connected to your loved ones during this raging pandemic. It is such a stressful time, especially for those of us in the North where sunlight is diminishing. Sending love and light to my Alaskan friends and family.

Here is an update on my cancer journey. I have two more Pacilitaxol infusions to go and so far I’m managing pretty well. The `hit by a truck` phenomenon resolved on day 5 of the first round, and wasn’t so bad the second time around. But I have more peripheral neuropathy than my doctor is comfortable with. This is a side effect of nerve damage to the hands and feet and can sometimes be permanent. So she is lowering my dose of the chemo drug for the next infusions. Other than that, I’m feeling pretty good and very glad the chemo will be over soon.

Last week I met my Radiation Oncologist, another amazing woman. Her name is Mira Keyes and she has an impressive background, originally getting her MD in Serbia. I really like her. We meet again Dec 21 when I’ll have a couple of CT scans and she will map out the area of my left breast she wants radiated. It will include the lymph nodes under the scapula. The actual radiation will begin in January and will be completed mid-February.

Dr. Keyes gave Jerry and I an overview of the reasons for all this intense treatment, information we already had but still needed to hear again. The chemotherapy is a whole body treatment, for any cancer cells that have made their way beyond the breast area, and may metastasize in the lung, liver, brain or bones sometime in the next couple of years. This chemotherapy regime is supposed to be about 30% effective. With TNBC if we make it to 5 years we are considered cured because the cells are so aggressive the spread usually happens in the first few years.

Four years ago, Jerry had surgery for prostate cancer. That is one of the cancers that have a tumour marker, or an indicator in blood tests that can tell you if the cancer has spread. Thankfully his tests have completely normal ever since. My kind of cancer doesn’t have any indicators like that. The only way we know if it has spread if if there are symptoms of a new tumour.

The other treatments—surgery and radiation— are localized, removing or radiating tissue in the breast area in case any cancer cells remain there. Once the radiation is over, there is nothing more to be done.

Starting in February I am planning to take a year of semi-retreat, to deeply listen to my mind, heart and body and allow for a more natural healing to take place.

So that is the whole picture, and I feel like my journal entries are winding down. I write one more after I finish Chemo, sometime in mid December. In the meantime, I am so grateful to all of you for being companions on this journey. It has meant a lot to me to know you care. There is so much suffering in this world, and each one of you has your own burden. Now, more than ever, I realize that sharing our burdens is the key to resilience. Sharing not only our hard times but also our joys. We human beings are interdependent. We may be temporarily in isolation but we are never alone. Dissolving the fears that divide us, the flow of love and kindness is unstoppable.

For our American friends, Happy Thanksgiving. Sending gratitude and the flow of kindness to you all.
With love
Susan

 

December 17, 2020

 

Good morning, dear friends,

I`ve been lying awake for a couple of hours, deeply feeling and contemplating the news that my mother tested positive for Covid yesterday. My three sisters and I had a zoom call that included Mums doctor for the first half hour. She confirmed what we know, Mum has no significant co-morbidies other than being nearly 96. She is perky and in general good health, though she had a cough recently which is improving. This is the first outbreak in her long-term residence, and it happened on the same day that vaccinations have begun for staff. However, we already have 3 staff who tested positive along with 8 residents. So today we join millions of anxious families around the world who are toggling between prayers of hope and our deepest human fears: sickness, death, not knowing and isolation.

I’ve been reflecting on how contemplative spiritual practices train us to deal with these crises. One example is the reminder to never forget death. Opening our eyes to the truth of death makes life a sacred journey, each day, each moment having its own version of birth and death. I’ve been working with this practice for many years, and when winter solstice rolls around, which is the opposite to my summer solstice birthday, I consider it a chance to celebrate my death-day.

My diagnosis of TNBC came a few days after my birthday this year, so the cancer journey offers a vision of the arc of my life, not as a linear path but more like a rainbow. It is vividly present one minute but might dissolve the next. Pure magic! And you can`t quite figure out where is the starting or ending point, or even know which is which. I also think of my friendships with each one of you as rainbows in my life. In every case I had the hope they would last longer, that I would be able to share my love and appreciation more obviously, but the rainbow-truth dissolved that expectation and I had to let go. But what remains, thanks to this rare opportunity for us to gather for this cancer-journey, is the gift of creating some space to feel the beauty of all the rainbows in our lives, and how letting go only makes them more vivid. So, again, to each of you who have shown up here over the past few months, thank you for the gifts you have given me both during this time and throughout my life. No matter how brief or long, your rainbow is complete for me. And special thanks to my precious sister and best friend, Mary, who set up this Caring Bridge site for me. At first, I had no idea what it was for or how to use it. Now I realize it is truly a bridge, heart to heart.

Lying in bed this morning thinking about my mother, hoping for the best and fearing the worst, I thought again about how the contemplative spiritual traditions offer us a tool to work with our anxiety. We are taught to make Aspiration Prayers. This builds on the very common human emotion that comes up when we say good-bye, even as we close a letter or e-mail. We have that awkward moment— do I tell the truth and say `I love and care about you` or do I numb it down to ` best regards`. To quote the great Lous Armstrong, `friends shaking hands, saying: how do you do. Really, they are saying: I love you. ` These are the simplest and most common Aspiration Prayers, putting into words our hope that all goes well. We don’t have to know a person a long time or intimately to truly love them.

In the spiritual traditions, the Aspiration Prayer goes into more detail, expressing the wish that we could extend beyond our personal powerlessness to have the ability to help relieve the suffering of our loved one, or even of all beings who are suffering. We make a prayer to a Holy or Divine source of blessing. In some traditions, we set the intention to build our own capacity to help over as many lifetimes as we need to until we finally can make a difference. This spiritual warrior practice is fueled by broken hearted love. As I think about my mother and feel overwhelming gratitude for all that she has done, I’m invited by my teacher to imagine that every suffering being has at one time in a past life been my loving mother. I owe them all the debt of gratitude. Whether this view of multiple lifetimes is true or not, I have no idea, but the impact of that imagining is like jet-fuel for an Aspiration Prayer.

My spiritual mentors say that Aspiration Prayers are good to do at the end of each day and are important when preparing for death. Lately I’ve been trying to generate these on the spot from my heart rather than reading liturgies. But the formal prayers are a good model for how more spiritually evolved people have constructed them. In the arc of the past 7 months two dear friends have died and one more is on her way shortly. Pre-death and funeral rituals are another way that we use Aspiration Prayers, when friends gather to wish a safe and protected transition to their loved one. Another time when Aspiration Prayers are made is at the New Year. We can write down our personal wishes for what we would like to accomplish or see happen in our world, then put the aspiration in a box until the following new year.

Getting back to my mother, one reason I launched into the topic of Aspiration Prayers is that I feel it is an antidote to worry. My mother has had lots of traumas in her life, her brother died in a plane crash and her son in a car accident. She didn’t get grief support at the time and had other traumas going on. As a result, she freezes into worry, trying to control the uncontrollable. Worried about my cancer, she warns me to be careful going for walks. But she also has a great sense of humour and sometimes we’ve laughed about which one of us would die first.

This talk about endings feels like the right time to be closing my Caring Bridge journal. Yesterday I had my final infusion of chemotherapy, and it will be three weeks before my body begins to clear from the impact of the drugs, although it will be a few months before my hair begins to grow back, eyelashes first, I’m told. (Yay!— you don’t miss eyelashes until they are gone!) I move on to Radiation therapy in January.

To all of you, dear Rainbow Friends, I make the aspiration that our time together has been a reminder of our shared human experiences of love and loss, of sickness and recovery and inevitable death, of how we can come together to be more resilient to counteract the dangers facing our societies, most of which depend on narratives of fear, divisiveness and greed.

I can honestly say that my diagnosis of cancer has been one of my life’s greatest gifts. Being in Covid isolation has made this time shared with you all the more vital. And my view has changed. I’m no longer looking forward to getting back to`normal`, but eagerly awaiting to meet the new body-heart-mind that is emerging as this stage of my treatment comes to an end. I have no idea what lies ahead but I am confident that I will find moments of beauty and joy in every day, thanks to the experiences of the past few months.

So bringing to mind all of the families suffering from this pandemic, all over the world, as well as all the other forms of suffering, lets dedicate our time together to not being afraid to open our hearts, to feel vulnerable and courageous and be confident that the power of love is much greater than fear.

Good-bye, I love you, and thank you again for being here.

Susan