A transformation is occurring. It involves the organism known as me. The baby named Carma Yvonne by Ruth Gagne. The little girl rescued from shame and destitution by a Chinese man whose heart was bigger and better than MAGA will ever have the eyes to see. Jon-Jon Chan. Changes are happening to Carma Gagne Chan, wife of Oliver Simonsen, grizzly mama bear of Chelsea and Keath, Gramma Carmels to Will, Adairah, and Tessalin. This is life in 4D.
The real me that is beyond containment in any organism is preparing to go home. Peace surrounds me. Calmness and beauty reveal the truth of the cosmos and all beings in and of it.
My best friend Tim wrote this most beautiful sentiment to me yesterday, when I thanked him for always getting me. “Because I'm convinced that the two of us originated from the same Stardust.”
More later. I am a masterpiece in progress.
Please enjoy one of my favorites... 7and5 is the name of the artist, I created a radio station based on their music and similar artists at Pandora. You can find them at Spotify and YouTube. Here is one of my favorite tunes by 7and5 at YouTube, this is Wingspan on their Dragonfly album. I adore dragonflies! Who doesn't?!
Tuesday, April 22nd
7:09 AM It is a relief to check my phone and have no calls or messages. I want to thank all of you who are reading my cancer journal and granting me peace and quiet. Truly, there is so much for me and Oliver to process and do right now, this is the best way to support us. I know we are in your thoughts.
The discharge instructions were a lot and I am still non-committal about 28 days of fancy Big Pharma injections over the risk of blood clots. I am writing to my doctor about alternatives. What happened to the simple old school method of taking an aspirin per day? What about moving my feet when I'm in bed, plus wearing compression socks, and moving my arms when I'm up and about? Surely we can imagine what the recommendations would be to someone who did not have access to the new fancy self-injection for 4 weeks method. It's a bit much.
I had a small bowel resection surgery 2 months ago, went home, no compression socks, no blood thinner - just did as much walking as I could tolerate.
Now I will have some breakfast, do a little walking, and take a shower. Then rest.
Please enjoy one of my favorites...fantastic coral reef footage to have on the telly, watching this for several minutes is a wonderful and easy form of meditation. Nature Relaxation has been a favorite channel since I discovered it during a hospital stay in 2020, when I slipped and fell and fractured my spine.
The doc answered my question. Basically, people with cancer are at a higher risk of post-op bloodclots for several reasons, one being hypercoaguability. They've seen a higher incidence of bloodclots after surgery in cancer patients. It's up to me, she recommends the Lovenox etc., etc. So I asked for a home health care nurse to come and help me learn to stab myself because I'm super phobic of needles and have never been able to do it before. Ugh. I'm such a baby. And no, I won't let any other amateur do it either! Even some nurses are better at it than others. Sigh.
3:01 PM YAY!!! I can take my second 500mg dose of acetaminophen for today, YAY!!! I am in so much pain. They can't take it all away - it slows the bowel action, results in constipation, that's a bigger problem. So I have to tolerate pain, only take as much as is necessary to keep doing some walking and deep breathing.
No word yet from the oncology team. My post-op follow-up visit is May 1st. I don't know if anything will be scheduled before that date. Meanwhile, it's easy to ask questions via MyChart.
So this is what it's like to get a cancer diagnosis. Bits of info, long spells of nothing between. Whatever.
Wednesday, April 22nd
Screenplay ASIN: B00P5CNRG2
Thinking of you on your birthday, Dad!
While waiting for calls about the liver biopsy result, home health care, and oncology appointment, let me tell you a little about my passion for screenwriting. This is one of seven movie scripts I have completed. Not a lot of people can say that.
There is nothing else like the art of writing a movie. It is one of the greatest challenges and adventures I've gone on. My trailhead started with Professor Richard Walter, who taught the subject for three decades at UCLA film school. This dear man generously responded to a letter I mailed to him in 1991, telling him how his book, Screenwriting: The Art, Craft and Business of Film and Television Writing, had helped me learn how to turn my first novel, The Genius of Saardu, into a movie script. I told him the gist of the story and asked if he would be willing to take a look at it. I had never had been to college. I dropped out of high school in my junior year, in favor of going apple picking with the Shiloh Youth Revival Center that I had joined at age 16 in Salt Lake City.
I have had a lot of adventures. Apple picking in Malott, Washington, stands in my internal museum among the greatest. Not a lot of American kids can say they have worked on a fruit picking crew. I had a blast. I was with friends. We lived in dorms in the middle of orchards, had bonfires and singing every night after supper, it was hard work and lots of laughter and fun.
Anyway...the professor wrote back! He was intrigued. Yes, he would take a look at my script, if I promised to be patient, it could take several months for him to get back to me about it, he explained he must put his students and clients first. This was one of the most thrilling moments of my life, reading his letter. I was beaming, and quickly set about writing a letter thanking him, promising to be patient, and put my script in the mail to him at UCLA. Six months later, I received his notes on my script, and the highlight of my life as a writer was him saying, "Congratulations, Carma, you have written a story that is original, refreshing, inventive, and highly marketable!" I let that wash over me several times. I was stunned. The man had absolutely nothing to gain by giving me false praise.
I did have some work to do to improve the readability and meet industry standards, but all in all, it was in pretty fine shape! It's a very long and winding road between 1991 and 2009 when the twelfth iteration of my Saardu script earned multiple awards and nominations. To date, I still own the rights. No one has made a worthy purchase offer. The type of angel investor that takes on a project of this magnitude, with the inherent risks of being written by an unknown talent, having no built-in audience because that unknown talent prefers creative writing over boring marketing tasks, has no interest in fame, and doesn't wants a piece of the franchise--that sort of wealthy risk taker is as rare and hard to find as the giant squid. Whatever. My son will inherit all of my intellectual property rights. He can do with it as he pleases.
I met the professor in person at one of his seminars after I moved to California in 2004. I enrolled in his summer class, and hired him as a script consultant. He read each rewrite and gave me thoughtful and very educational notes. I kept every copy, they're in the attic with his handwritten notes and letters. I cherish this experience. After my Saardu script won awards for best children's script and best science fiction script in various screenwriting contests, I did some pitching at festivals and soon lost interest in that process and turned my attention toward writing low budget scripts, romcoms, true stories, that sort of thing. My Dad's life story is one that, whenever I spend five minutes telling someone about him, they tell me I should write a book. Instead, I wrote his story as a screenplay.
I love screenwriting because it is highly structured and intensely challenging. Most of all, I love it because as I write each scene, I am watching the movie in my head. Popcorn and all. No one else will ever see the movie I have seen. The final cut will be a collaboration. It will be something else. I alone get to see this movie as I imagine it. Einstein famously said imagination is everything. He was right. Living in my imagination has been one of the greatest gifts of being a natural born writer.
Thursday, April 24th
7:45 AM Oliver and I managed to get the blood thinner shot done ourselves yesterday evening, after no call back from a home health care agency to say that a nurse would be coming to help with that. I mustered the courage to let him try, and gave fair warning that I might slap him if he hurt me. No pressure! It feels silly to be so phobic of needles, but I know it's a common fear. I didn't slap him. It did sting more than usual, he thinks he pushed the med in too fast. I'm sure it will get easier for both of us. I had to close my eyes the whole time to prevent a knee-jerk reaction. Done.
As for today, I'm feeling quite anxious because I dropped another pound overnight, down to 112.8, and I'm not exercising, I'm consuming more calories than Fitbit says I'm burning - yesterday 1,501 calories in 1,178 calories out. Tuesday 1,667 cal in, 1,126 cal out. I have got to get more food into me, the thing is, it's painful to get bloated. But I must. I simply must maintain weight. Otherwise, I'll wither away before I get a chance to see my daughter.
Need I say more? Nothing more to be said today. This is all that matters now. Maintain weight, see my daughter as soon as possible.
Friday, April 25th
9:56 AM It's funny how slow things happen. Cancer was confirmed in my colon on March 27th. A month later, we barely have much new information. Cancer is also in the lymph system, it is not metastatic colon cancer, but some other type. Still no results from the liver biopsy, it's been a week. Still no appointment with an oncologist. And I'm not panicking. I mean, even if I had all of the facts today, I could not tell my daughter today, she is in the throes of burying her dad, the one who adopted her.
I have a supply of pain meds here, so if the lymphoma suddenly turns painful, I can get some relief and really that's all I am asking for, to be relieved of pain.
The pain of surgery is still unbearable without oxy. I've been taking 5mg 3x daily just to make it tolerable, to be able to walk back and forth, to stimulate the bowels and prevent blood clots. I really expected them to give me more pain relief!
One week down, five to go. It hurts everywhere they did anything - the incision is the least of it. The three large lymph nodes removed from the aortic area, I can feel the aching at the back of my abdomen. The liver biopsy is one of the worst, sharpest pains, every time I have to cough, hiccup, or laugh - and it's worth the pain to laugh! We've been watching Seinfeld on Netflix, from episode one on. Also watched The Gorge on AppleTV, Loudermilk, and Your Friends & Neighbors with Jon Hamm. All very distracting entertainment.
Cards, letters and flowers have been coming in, heartwarming.
Resting in a dark room with gentle sounds has been a luxury.
My husband, Oliver, has been an absolute gem!
A friend shared this hilarious Philomena Cunk Wonders video. I can always count on JFritz for laughs!
Sunday, April 27th
Sleeping well. I can sleep on my side now. Pain diminishing. It's a good sign that my body is healing. Amazing!
Monday, April 28th
Oncology appointment scheduled May 12th. Surreal. It all happens so slowly. Anyone want to make a bet that I won't even know what type of lymphoma it is before my granddaughter's wedding on June 7th? I plan to tell my daughter about my diagnosis after the wedding. She just lost her adoptive dad to cancer. Let her enjoy the wedding plans, send the newlyweds off with happiness, and then break the news to her. I probably won't even know by then what type of lymphoma it is. I'm so over the waiting game. It doesn't even matter anymore. The only thing that's real today is healing from surgery and hanging out with my honeybear. And napping. I'm loving naps!
Tuesday, April 29th
A detailed biopsy report has been received via MyChart, results on the liver and lymph biopsies. It is difficult to understand the medical terminology, but from what we can understand, it seems to indicate that the colon cancer did not go anywhere beyond the colon. The liver is negative, benign. The lymph nodes, as we already were told, were a different type of lymphoma, and now we have the report indicating it is consistent with small lymphocytic lymphoma/chronic lymphocytic leukemia (SLL/CLL), which is a slow-growing, common form of cancer. That's really all I need to know at this point - I'm not dying anytime soon, at least, not of cancer. The oncologist will confirm this on May 12th.
Now I can get back to living my life, which is all about healing for the next four weeks.
Thank you for keeping tabs on how I'm doing through my cancer journal. I'll make one last entry after speaking with the oncologist, just to confirm our understanding of the test results.
One would expect to feel jubilant over such news. Rather, the feeling visiting me is one of outrage. "I am so sick of this aging body shit." Excuse me. In the spirit of total transparency and openness, I am saying what is there in this little body's sphere of consciousness. It's all meaningless and empty.
This is what I love about the way of zen, the tao. The natural way of the universe. Patterns. Colors. Shapes. Everchanging visions, slow and rapid. The hills are never the same, from one day to the next, yet to our eye they appear identical to what memory recalls seeing a month ago. Perhaps a slight change in hue, depending on a recent rain. In reality, every boulder on that hill has nudged a fraction of a millimeter and lost some skin in the game of erosion. The mountain is constantly changing into something else. We are constantly, slowly mutating.
Philomena Cunk & a famous astrophysicist
It is easier to know that you are dying than it is to not know how long you have to live. This news of not dying anytime soon, at least not of cancer, is having the impact of a game show host, "Congratulations! You've won ten more years of anxiety - maybe twenty or thirty!" 🙄
Eat. Sleep. Swim. Counting down the days until I am back in the pool...May 29th, the 6-week mark.
Friday, May 2nd
We often think of zen as a chilled out place where anxious thoughts and negative emotions do not exist. I often forget that the way of zen includes feeling deeply and observing a frenzy of agitated thoughts. Decades ago a phrase was taught to me that has stuck with me: What you resist persists.
I don't like these feelings, these thoughts. I don't want them. Too bad. That's what's here now. Feel it. Notice the thoughts. Stop resisting.
What are the feelings and thoughts? Strangely, anger and "now all the problems I didn't have to face are back in my lap!" Death is so liberating. But my family is happy that I do not have a type of cancer that will terminate my being here this year or next. I see their relief and happiness, I understand it, but I do not share that feeling. It is such a strange place to be.
Classic symptoms of depression have hit me. The desire to withdraw. Despair. What next? So many thoughts of all the things that happen to people, to aging people, especially. Thoughts of shutting down. Don't take any risks. Live a life of avoiding risks. These are the thoughts of PTSD.
It would help me feel better if I could exercise vigorously, but the body is not ready for that yet.
Again, I go back to one day at a time. I can't even eat oatmeal yet! sigh
I'm so spoiled.
Happiness is within my reach. Gratitude is the way.
Grateful that I can take a deep breath and it no longer hurts quite so bad to sneeze.
Grateful that the incision is healing, no sign of infection.
Grateful that I no longer have to consume 3,000 calories to maintain weight, I have been eating around 2,000 daily and am up to 114 again (from 112.6 last week). My goal is to get back to 115.
Grateful that I'm married to such a positive, sweet person. How he puts up with me is a miracle.
Grateful that my kids are okay. Yeah, linger on that one. How many parents would give anything to be able to say that.
Feelings change like the weather. Today my mood matches the soft gray clouds hovering on the San Jacinto hills. Calm. Peaceful. Is it a good night's sleep? Cannabis-infused dark chocolate? How does our body process the grief of a new diagnosis?
Today thoughts are focused on what is best for long-term wellness, quality of life and happiness. The decision has been made to retire rather than return to work when short-term medical leave of absence period ends, to maintain a low-stress lifestyle, to protect this doubly compromised immune system (sarcoidosis and lymphoma), to focus on health and strength. It is a big decision, a big change (another one) and I am grateful to have my family's support.
I must not think about the money that I am giving up. It is very hard to leave money on the table. It's like a gambling addiction--working, I mean, continuing to earn more, to win more. I have saved for retirement, it is feasible, and I have earned this rest and relaxation.
9:36 PM sitting in the ER
Experiencing a sharp pain whenever I use an abdominal muscle to get up or walk. Called the 24/7 Nurse hotline my insurance provides and was advised to get checked immediately.
Tuesday, May 6th
The past two days have been busy, as we had to catch up on sleep and get ready for travel (not me, only my husband is going to his son’s graduation). He stayed with me all night in the ER, falling asleep in a chair. I had a gurney because when they tried to start an IV, it blew and I nearly passed out from the pain and distress. It was the worst IV experience I ever recall. My blood pressure dropped. So, at least I got a bed for the night. 🙃
The results of the CT scan and bloodwork were all good - nothing found as to why I was having an increased amount of pain. It may be a pulled core muscle from sneezing and/or the treadmill I did on Wednesday. I was released at noon on Sunday, advised to wear a belly binder and take it easier.
My sweetheart is at the airport now. I’m staying with my son while he’s away.
This morning the pain is noticeably less, thanks to rest, binder and time.
I have submitted my resignation effective June 1st. It’s for real…I am retiring. I am focusing on my wellbeing.
Monday, May 12th
There will be no oncology visit today. The conversation has been postponed until I have confirmation from Medicare on my enrollment in Parts B and C, then I can figure out which local oncologist is in network and set an appointment. It made no sense to start with an oncologist and then switch next month. I am in no rush.
I have already told my daughter what has happened since March 27th. I decided not to wait until the wedding, I didn't do it in person, but the communication was appreciated.
I am once again pain-free. There is minimal discomfort around the incisions. The next step is to gradually reintroduce the normal, healthy foods that I like to my digestive tract. I have had oatmeal once without any bloating. I'm anxious to switch out white bread for whole grain bread - I really love Dave's Killer Bread, but I'm a little nervous about eating nuts and seeds, so I'll wait a couple more weeks for that. There is no rush. The most important thing is to let my colon completely heal.
Tuesday, May 13th
Zen is a being thing, not a doing thing. One does not find zen or acquire zen, as if it is over there and not here, as if it is a state of being that is outside of our bodies, outside of our skulls, as if it is a thing to be grasped or understood. Zen is already everywhere in everything all at once. We simply become aware of it and we simply become unaware of it.
Drawing of an imaginary figure in the night sky, aka Orion
Thoughts appear and disappear. Do not claim them or resist them. Merely observe. Thoughts form temporary ideas the way water and wind and temperature form temporary shapes in the sky. Thoughts form imaginary ideals the way clusters of galaxies that appear to our eyes as stars with unreal connections that turn them into constellations, creatures of the cosmos.
None of it is real. Not even in our minds. Mind is a concept. All of the little shapes I am typing, that you are reading, none of it is real. It is a temporary convenience. A method of communicating, of transferring energy, of experiencing the cosmos from one tiny dot of a perspective.
This is why talk therapy has never worked for me. Every therapist I have encountered has come from a Western set of beliefs and assumptions that approach the mind as if it is a real and individual thing inside the skull, that belongs to me, that is me, and that all those thoughts randomly coming and going are mine. It is folly.
There is an ancient proverb that says something about "in much words is much sin". People talk too much. People do harm to themselves and others by talking too much. I do not mean abusive language, I mean talking nonsense and lies, constantly, because of this false identification with a passing thought.
The Happy Buddha, a birthday gift in 2014
A transformation occurred in me that can never be undone. It occurred more than four decades ago, when I was first introduced to the way of zen, observations and commentary attributed to Buddha. A fundamental paradigm shift occurred and suddenly everything was different from the inside out. Everything. Every single thing. It is fascinating. To observe the mind, to observe surroundings and be conscious of the fact that there is no such thing as a chair. These are all temporary conveniences, conventions, sounds, shapes, waves, wavicles, constantly changing, slowly decaying, to be born again in a supernova, to be observed by other conscious beings, collectively. What will they call the shape?
Then there are all these languages. In English, it's chair. In Norwegian, it's stol. On this continent it's this, on that continent it's that. Continents. Drifting shapes of matter denser than other matter. It's hilarious. Hence, the laughing Buddha.
It's all made up. None of these problems are real. It is not a problem for the palm tree to grow taller. It is not a problem to let withered fronds cloak the trunk. Let them. Why worry about the cost to have the tree trimmed? Let it do what it does. Does a neighbor find it unsightly? Fascinating. Is that a problem?
"Oh, Karma, you've never had an HOA get after you!" Let them. If and when there is a real problem, laugh at the game and mindfully play along.
Please enjoy one of my favorite Monty Python moments...
The Ministry of Silly Walks
There is no such thing as cancer. Only life then death. Only this then that. Cancer is a concept. Cells changing into slightly modified cells. An inconvenience. Remember the wise words of Sir Douglas Adams, "Don't panic." (And if he's not a Sir, he should be...nudge, nudge, wink, wink, 'King' Charles.)
.jpg "Orion constellation")
<3 Happy Mother's Day Carmi ;-)
ReplyDeleteThere's only one person who calls me Carmi! I know you :-D
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