I realize my perspective is uniquely mine, and not common, but it is good. With death I realize there is a strong human desire to rush in and do, as a gracious act of love. I did the same. I write these words to reassure you that I am better than fine, Content. I need very little, I have learned to ask for what I need and it is working well. I appreciate the notes and letters and space that allows the magic to work. THANK YOU.
For me, this dying is about living a paradox. Both being attached to the immediate world and letting go at the same time. Grief is always close, spilling over when acknowledging the letting go of my kids, loved ones and loved life. I don't want to push the grief out, it is precious and I accept it as my companion on the journey. At the same time I am sailing a beautiful boat home. In the quiet of my mind, moving away from hectic social living, the experience is expansive and superb, a close up transformation, something near impossible to see from afar. Being so present I see and feel profound understanding and gratitude, a beautiful experience of grace. The view is softer and more balanced, it draws me in.
I realize my perspective is uniquely mine, and not common, but it is good. With death I realize there is a strong human desire to rush in and do, as a gracious act of love. I did the same. I write these words to reassure you that I am better than fine, Content. I need very little, I have learned to ask for what I need and it is working well. I appreciate the notes and letters and space that allows the magic to work. THANK YOU. Sad news and a little hope. I was admitted to the hospital Thursday afternoon with severe headache and loss of function in my left hand. a brain MRI showed cancer lesions in my brain. hydration and steroids rid me of the headache, drooping face and mumbling. i have also started a 5 day treatment of whole brain radiation to reduce brain swelling and related impact to other body functions. The hope is that i might get a few more months at home. Success is dependent upon whether we can control the cancer in my body. My current drug Keytruda is the long shot hope of slowing overall progression( pain is down... but scan still shows growth...? next scan Sept 11. This latest development brings me closer to hospice. i can no longer drive, I'm at risk for seizure and additional stroke-like events. The radiation will fatigue me and obviously I will be staying closer to home. i may have some energy for quiet goodbyes but my circle will be closing down, especially when i shift to hospice care. My time in hospice will be short and open only to the close family and friends who have been my main support, we've been growing together toward this sacred place for over a year. Don't feel closed out, feel free to email and text me. Results for my July 24th CT scan are in. Since the last CT in May, my cancer has progressed. This could possibly be the immune system working, or just progression of the cancer. I have another scan scheduled for September, that will likely tell more. I've had a bit more energy lately but that could be due to my low TSH (hyperthyroid), whatever, I welcome the energy. I don't get out much due to disorientation related to my vision (lesion on my retina), lights and movement can be hard to manage. Still, I read books and listen to podcasts to keep me connected to me, and to the infinite you. DARKNESS I'd like to share something that recently hit me very hard, Not a proud episode, and likely not something everyone in my position would feel. A couple of weeks ago I was so dizzy and disoriented that I had to stay in bed for days. This was the first time I felt completely vulnerable. It wasn't when I heard "cancer" or "death" that broke me open, instead it was then when I couldn't take care of myself, no one in charge, no one tending to symptoms, medication, meals. All Alone. I had caring people around me but they weren't taking charge. How did I react? Dark. Overwhelming anger over caretaker abandonment. Ugly to feel, also deep regret for being too strong and self sufficient, no one knows how to care for me. I understand better how hard it is for so many people to live with vulnerability day to day, I understand where the anger comes from. This shift in emotion was SO difficult that it became a teaching moment for me. I've started to talk about my care needs, trying to invite others to help me, and I'm meditating more. Back to spirituality as life ballast . Current book - "The Examined Life: How we Lose and Find Ourselves" by Grosz. ME - I am up and about some, but mostly staying close to home. I'm not willing to attend events, especially in large noisey spaces or with large groups of people. I'm best sitting still, one on one...and lots of the time I need to be in bed. I am absolutely delighted that three Little Free Libraries have been erected in my honor: at 2425 Jackson St NE, 135 Bedford St. SE and 15th St in Long Beach, CA (with groovy decorations). And there could be more Little Libraries coming! I filled the Minneapolis libraries with my book club books. Each neighborhood is excited with the library and neighbors are seen lending and borrowing every day. Instead of a granite stone, you will have these Little Libraries, or any Little Library, to remember me. After I am gone, on Memorial Day, leave your favorite book in a Little Free Library. You can personalize it by inscribing the book with words from your heart, passing on a great gift to many readers. If you don’t know which book to leave, leave my favorite book, “Tattoos on the Heart” by Fr. Gregory Boyle.
UPDATE: I have completed my 2nd immunotherapy infusion with no negative side effects. I will be scanned in August to assess effectiveness. No signs of improvement. I continue to feel exhausted, with some pain and loss of eyesight, no energy to get out or enjoy social gatherings. Most of my interaction is with immediate family and books. Thank you so much for your cards and emails of support, and for understanding that I can no longer “show up” socially. And being heard. All of my life I needed and necessitated my friends and partners to look deeply inside of life and self. I wanted those close to me to articulate and talk about even the most difficult things. Some couldn’t and at times that felt like betrayal to me. I now see that I expected a bit much, a bit fast. I desired “the conversation”, for masks to drop, to speak and act from the core, in safety, and in love. Good intentions, but I have learned that this is not how most the world operates, masks are constructed for personal safety and take much time and effort, if ever, to release. I continue to view each person as whole and competent in in their own emotional experience, and it pains me when masks obscure this, maybe it scares me because I don’t truly know who the “you” is behind the mask. I now understand this struggle as a personal lens, rather than a truth or solution, and this lens has colored much of my journey. I wish I had found a way to befriend kind masks as safe(ish) and necessary, and had figured out how to live within the separation they create. My demand for words seemed fair, “just tell me”, but most of us live parts of our lives in a space where there are no words. I instead lived as a master and lover of words. I honored words as an incredible tool and art form. But, as with anything, too much signals lack of balance, bringing outcomes that are generally ineffective, often harmful. I now understand that words alone can’t bring us safety or into balance. Through my illness I have found friends and family who could speak and listen with selfless quiet compassion. These friends, their words, our conversations, have been a blessing for me. I have moved and continue to evolve in how I know myself and how I understand the dying process. I am now learning, to my amazement, that there is much more waiting for me beyond the words. As words and “doing” fall away I drop into the quiet subtle place of being. I am soothed and alive at this new quiet level. My meaning arrives through the senses, it comes from naps with the puppy, feeling breeze ruffle my skin, enjoying tea and toast with the sun and birds, and in being allowed the safety of returning to my bed and books for much of the day. The biggest blessing is my daughter’s smiling face, which greets me at my bedside each morning, no demands, and no worries, just there. Not many words needed any more. I am safe, loved and being allowed to die without “fuss”. It is wonderful to feel the world spin around me and still peacefully let it all go. I now understand fully that dying is indeed an “alone” experience, but not necessarily a “lonely” one. As I move more and more into the quiet, you will lose the “me” you used to know. Please hold memories dear, because although there are sparks of me still, there is likely not enough of “me” to meet social expectations or kindle the old familiar flame. I am a dying person now, fading from the person you knew. I feel as if I am literally becoming evanescent, turning slowly into fairy dust. How does it feel?…good and freeing. If this loss pains you, please remind yourself that there is something out there, beyond words and doing, which is really wonderful. I will wait for you there. …until my leg gave out. It may sound crazy but I am absolutely delighted to be officially off chemo. Yes, my cancer is advancing, so what’s to dance about? True. But after 14 months of chemo side-effects, I am glad to return to my own body chemistry, albeit failing, it still feels more authentically mine. I was almost giddy this morning, closing records and saying goodbye to CO-1686. I mean, who can trust a drug that doesn’t even have a name?! Already I experience less nausea and a bit more energy. The nurse gave me the familiar refrain, “You look great, better than last time!” What do you say to that? Well I’m not. I think I said “Yeah, well…” and she got it. The oncology nurse, the research nurse and the NP all gave me a warm goodbye (why didn’t the Oncologist show?) and I bounced out disregarding my low, low blood pressure and “funny” EKG. When you are critically ill tests seem to be off all the time, basically YOU are off, so I’ve learned take it in stride and not sweat the numbers. My focus was on friends arriving in town, the beautiful day, and an all-night art festival on Saturday. My hope is for a bubble of rebound energy to allow me enjoy the weekend, and maybe beyond. Pain is becoming a symptom that needs management but it’s not too bad yet. UPDATE: Monday I return to the University of Minnesota to begin immunotherapy. I feel fortunate to be given the chance to try the drug Keytruda (prembrolizumab), especially since it is not yet FDA approved for lung cancer. Thank you to the health system Gods and the FDA for fast tracking some of these new options. BUT STOP, don’t throw your hat in the air yet, my likelihood of response to this drug is very low. Good news, it is unlikely to have side effects, so there is little down side. And then my leg gave out. Across the street from the clinic, in the hospital, I lost feeling in my right leg. I couldn’t walk unaided. My best guess is that it was a nerve problem, something (you can guess what) pushing on my spinal nerves. I was directed to the ER but instead I leaned on Craig and made it to the car. We picked up walking sticks for me, met Brigit for lunch, hydrated well, and my leg started working again. More to celebrate, but at the time I have to admit I called it a “shit sandwich”. For now I will celebrate and hydrate (because they rhyme), hope that the new drug might help, be thankful to feel a bit better, and keep a cane handy. MORE NEWS: Sunday I am moving to Plymouth to live with family. Brigit and Rocket will be there, Connor stays the weekend often, and I won’t be alone if/when my leg gives out …or whatever the next adventure brings. Craig is being called back to work, but can retain flexibility to be here at critical times. I will be in good hands and I am excited to be around the “hum” of family once again. My new address is on the blog contact page. Death Cafe is a movement across the US and Europe, driven by young people who want to live more fully. Those attending understand that fear of death, and avoidance of topics related to death, suffocates energy to live. Death Cafe is not about teaching or presenting, it is about listening to each person without judgment; it is a salon for expanding awareness, acceptance and energy toward life. You can find more information at Death Cafe and from this Star Tribune article. My reason for hosting a Death Cafe comes from my experience with the dying process. Accepting that death was coming for me now, early in my life, was difficult to embrace. What I found more difficult was the anxiety and denial of those around me. People are good at heart and wanted to respond to my situation, but this mostly came to me through a filter of fear. Prayers, bible verses, miracle cures, bugle calls to fight…this is what I got. I know each response came from a sincere place but with death staring me in the face, I wanted someone to look me in the eyes, hold my hand, ask me how it feels, and to listen intently. Death seems to stir so much fear that people can’t be present with it. It is reasonable that we will be caught off balance and fearful in response to rare catastrophic events – terrorism, plane crashes, tsunamis – but why with a common, 100% certain event like death? Dying is difficult, but the most difficult thing is feeling like you have to walk the entire path alone. Now, three cheers for the human heart! I have had a marvelous year and many, many people have “come to the table”, we have shared meals, we have shared presence, and I have been asked many meaningful questions. We are designed to be connected, we feel better when connected, especially during the dying process. My blog has helped me connect and invite into my experience many loving and supportive people. Death Cafe is another way to prepare people to be present for the certain moment when death shows up for them or someone they love. For those of us preparing to leave, there is much joy in the celebration of love and a life well lived, but a celebration means that people need to have the courage to gather round and dance. Death Cafe - June 17th at 7pm First Universalist Church 3400 Dupont Av. S Minneapolis, MN 55408 Hosted by: Rev. Justin Schroder Colleen McCann I write to report that I am incredibly the happiest I've ever been. Doesn't that sound crazy! Perhaps it relates to the freedom I now have to move thoughtfully day to day, to spend more time in mediation and contemplation. I enjoy friends and simple things, not needing much. The good thing about a terminal diagnosis is that it keeps you in the present moment. Future plans and future thinking disappear, and this leaves me in the beautiful present. It may sound silly, but I feel a bit guilty knowing most of you are trudging off to work every day, and have family responsibilities too. HEALTH UPDATE – I have been fairly healthy with limited pain. Recent scans showed that the cancer is moving slower than predicted. The doctor seemed pleased but befuddled. I believe my “success” comes from a combo of happiness and cannabis oil, which I restarted once I began to progress. I will remain on the study drug (CO1686) until I progress a bit further. We are waiting for Nivolumab (Opdivo) to become FDA approved so I can switch to it as my final drug. NIvolumab will be a “Hail Mary” option for me (<20% success rate) but I am comfortable trying it because it is not chemotherapy, instead it is immunotherapy that (if it works) activates my own immune system to fight the cancer. With Nivolumab I will finally be free of chemo side effects and may recover some energy, and that would make me happy-er. UPDATE As you may know, I spent a few days in the hospital this week. I wanted folks to know that I am feeling “more better”. The Oncologist was willing to give us a straight answer, finally, 3 to 6 months. By body feel, I would say he was being a bit generous. My cancer is constantly with me, bear hugging my ribcage, making it harder to breathe and eat. My days are up and down, spending more time in bed. With the exception of my recent episode, my cancer has overall been gracious, setting me down gently into the God flow. My heart is at peace, friends by my side, precious time spent with my kids, reading books, meditating in the peaceful quiet, grateful for every day. Now is perhaps “the worst of times” learning a few weeks ago that my cancer is growing and spreading, with no treatment option left. My body is most certainly heading toward the exit door. In my heart and mind “this is the best of times”, “an epoch of belief… a season of light” to borrow a bit more from Dickens. It seems the heighten senses and opportunity that come with crisis has benefited me. I have spent the past weeks focusing on the Spiritual aspect of my situation. What is death? What happens? Where do we go? My reading and mediation has reached broadly into many areas: Buddhism, Christianity, Physics, Near Death Experiences, Health Perspectives… and all disciplines pointed to the same place. Light, energy, love, bliss. Let me say that louder, LIGHT, ENERGY, LOVE, and BLISS. Talking about this concept is difficult because it transcends day to day reality. This “place” or “experience” is named in many ways: God, Christ, Universe, Luminosity, Eternity, Implicate Order, Higher Consciousness, and Unconditional Love. What I am certain does NOT belong in this state is the human ego, i.e. fear, judgment, good v. bad. I feel certain that beyond the exit door is a state of incredible unity and oneness. I imagine it as those reporting a near death experience describe, heaven like, bright light, and omniscient with radical acceptance. Does it last, as a heaven? Are we reborn? Is it simply a phenomenon of the brain shutting down? I don’t know and I don’t feel the need to “know”, because of course this part of life is unprovable. Logic stops here friends, I stand at the point of surrender and I’m ok with that, in fact it feels wonderful. As this state of understanding dawned into my awareness, something huge shifted inside of me. I had accepted my diagnosis and prognosis honestly, I wasn't terrified, but my small sense of self still squabbled and suffered over hurt feelings. This actually hurt more than the news that I was dying, showing me how deeply I was looking for an answer in the wrong place. Once the shift occurred, things no longer bothered me, I could accept everything exactly like it was. Joy opened up in me with the realization that many parts of my life had already been dedicated toward shedding the me, me, me, ego and finally seeing the God in others. Money, material goods, status had lost meaning and no longer defined me. My job as a therapist proved to be an almost holy experience, welcoming those who felt broken, holding their wholeness as sacred and definite, until they could see and hold it themselves. The work was complex and demanding but it felt exactly right and energizing. I was evolving; I was on my way here! I now feel a lovely certainty that I finally know my place in the world. I continue to dream about working in this unconditional balance of love with women and children who suffer poverty and generational patterns of abuse. As long as I live I will dream, I feel my consciousness joins with the whole and my dreaming can help move things forward. Besides, this is what I love, I am so lucky to have the retired freedom to dream and fill my days with love. Below is an OnBeing (Krista Tippit) interview with Father Greg Boyle, a Jesuit priest who is doing something very close to my dream. He works with young felons caught up in gang activity, helping them find a way out, a way back to themselves. He runs Homeboy Industries. His balanced unconditionally loving approach is a model that makes sense to me. OnBeing (Krista Tippet) Interview of Father Greg Boyle |
Colleen McCannI have a good life with wonderful friends and family. This blog is meant to keep me in touch with everyone. Archives
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