Zen and imaginary problems
How do "I" or "i" "cope" with "reality"?
There is no I. Only this happening, then that. These thoughts, then those. These corporeal sensations, then those. This is the way of zen.
A young person approached Buddha and asked, "Teacher, help me quiet my mind."
"Show me your mind," Buddha responded.
Mind exploded, or imploded, whichever you prefer.
oh reality how i love thee
as a river that flows this way
then that and i am
the raindrop
enthralled in our twists
rushed over boulders jagged
then smooth
What is the problem? It has a name. Cancer. Lymphoma. Non Hodgkins. Subtype SLL/CLL. Whatever. Mutated cells that do not do exactly what the original DNA design was. That is what's so. And so what?
Shall we panic? Shall we flood the body with poisons targeting that type of cell? Shall we radiate every lymph node? Shall we pay tens of thousands of dollars earned with tens of thousands of minutes of stress to stress for tens of thousands of seconds more?
The whole oncological industry is laughable.
I mean no disrespect to those who choose this lifestyle of treating cancer with chemo and radiation. I mean that literally - choose - because I write this knowing that I am educating and liberating some readers, disabusing some of the notion that there is no choice in the matter. If cancer, then chemo and radiation. Says who? There is a choice. One choice is to live with it, then die with it. Not a problem.
Please enjoy one of my favorite influencers...
Friday, May 16th
This is me today...
And I don't know why.
I don't wanna.
Leave me alone.
Let me sleep.
Why are all these people bugging me about going to an oncologist?
When can I get in the pool?
When can I eat nuts?
When will I hear from Medicare? Doesn't matter, I don't want to go to any more doctors. No more needles! No surgery ever again! I'm so tired of it all. Five injections to go of the blood thinner. So stupid. Seriously over the top. They can't make a pill that does the same thing? Is this really necessary? I hate modern medicine.
When can I get in the pool? Are we there yet?
Saturday, May 17th
I guess it's a good sign that my energy level is improving, that my body wants to move more, that my brain is actively engaged in planning future activities such as cleaning and organizing, sweeping the porch, and walking more daily to prepare my muscles for that wonderful, anticipated reunion this ol' body has with that perfectly warm mineral water.
I guess it's a good sign that I stopped to smell the honeysuckle blossoms and took a photo for my very mundane Today photo album. It was one of those cool mornings when the San Jacinto hills slumber under a blanket of fog. A neighbor's hollyhock caught my eye. I guess these are signs that depression is lifting.
Tuesday, May 20th
Another day without symptoms. Today is the last of the 28 injections. Yesterday I got my ninth Covid vaccine since January 2021. It dawned on me that I have had Covid twice with cancer. My immune system was/is working well enough. Is that what we mean when we say "I'm fine"? Well enough.
The first time I tested positive for Covid was September 2022, when I flew to Idaho to visit my daughter. I had sniffles and a low-grade fever. I had been vaccinated five times.
The second time I tested positive was when my husband had Covid in December 2023. I had no symptoms at all that time. His symptoms were that of a nasty cold that lingered for about two weeks. He had been vaccinated a few times, and the vaccines always cause him to have mild flu-like symptoms. So, I'm the one with cancer and an auto-immune disorder (sarcoid), and I'm the one whose immune system handled Covid better. Go figure.
Still, he is anxious for me to speak with an oncologist. I am not. What is there to gain? Today I am free of symptoms - except for the high metabolism - I do have to eat many more calories than Fitbit estimates I am burning. Fitbit doesn't know I have lymphoma. It sends alerts daily telling me that I have been training hard (I am not training at all) and that I should take time to recover. The app is quite confused. On average, I'm consuming 700-800 more calories daily than I am burning based on the algorithm for steps, exercise, and heart rate. I should be gaining weigh rapidly. Instead, I have slowly increased from 112.8 a week after surgery to 114.6 today. My goal is to maintain 115.
It's not a problem.
Here, let me predict what the oncologist will say:
- "We" need a PET scan to know where cancer cells are today
- And more blood tests
- And more monitoring
- Depending on the stage, chemotherapy will be recommended
The only curiosity I have in the matter is about a new kind of treatment called "immunotherapy" - is it covered, what is it, what are the side effects?
The conversation will happen soon enough. Mail is expected today about my new Medicare plan enrollment. Once I have information that enables me to make an appointment with an oncologist in the network, I will request a new referral.
Nine days to pool time!
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| I have a date with the pool ~ May 29th |
Thursday, May 22nd
Carry yourself as if you are safe...
Tuesday, May 27th
Not much new to tell, other than receiving mail confirming my new Medicare plan starting June 1st, and I spoke with the front office of an in-network oncologist in my area. I emailed all of my medical records to them last Thursday and expect a call today to make an appointment.
More research about Non-Hodgkin Lymphoma staging...near as I can tell based on the pathology report and CT scans and what's obvious in my own body, I think I'm probably between Stage 2 and 3 because I think I have lymphoma in nodes above and below the diaphragm. I think that because I have swollen lymph nodes in the neck and arms, and the affected nodes removed were from below the diaphragm. The uncertainty is whether or not the swollen lymph nodes in the neck have cancer cells in them. There are only two ways to know: biopsy or PET scan. I want neither. My body, my immune system, has had enough invasive procedures. It is giving me very defensive signals and wants to be left alone. I rather prefer assuming that there is lymphoma above and below the diaphragm, and at the point any symptoms arise that I want a prescription to help manage them, then I will ask for that kind of help.
I imagine no oncologist wants a patient like me. Too bad. It's my life, my body, my choice.
There is no certainty in their predictions about how long I have to live comfortably. I prefer to assume that I will be comfortable for 2-5 years. My plan is to rid my diet of pesticides - eat organic, non-GMO foods - and to add glutathione to my list of supplements. My optometrist has extensively studied genetics and nutrition because his son had lymphoma and glutathione made a big difference in his case.
The way I helped my kidneys heal was with a kidney-friendly and anti-inflammatory diet, hydration and exercise. My diet limited sodium, protein, and calcium. I learned that plant-based protein is easier than animal protein, so about half of my daily protein came from nuts, beans, legumes, and seeds. I limited calcium to close to 100% of the daily recommended value (tracked nutrition by entering everything I ate and drank in my Fitbit app). Sodium was limited to less than 2,000 mg daily (based on a recommendation from my nephrologist in 2016). It is a major challenge to keep sodium under 2000 - there are natural sources of sodium in dairy, vegetables, and grains, plus everything made with flour needs salt added or it isn't worth eating. I achieved that goal by reading nutrition labels and choosing the lowest sodium product - condiments, breads, soups, sauces. I search for "no salt added" or "less sodium" labels. My taste buds adapted quickly. I no longer like foods that taste too salty. Bakery items are the worst offenders - besides salt, they require baking soda which is incredibly high sodium content. When I look at muffins, I see sodium. They're usually not worth it.
We did a road trip in 2020 along the Pacific Coast Highway between Portland and Los Angeles. In 2021, we drove to Utah for my mother's funeral, taking a scenic route back to California. In 2022, we flew to Portland then drove to Idaho to visit my daughter, stopping at Mount St. Helen's and Mount Rainier along the way.
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| Traveling in 2022 |
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| My new favorite t-shirt |
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| Silver Falls State Park, Oregon |
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| Forest near Mt Ranier (too cloudy to see peak) |
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| One of 7 caterpillars I rescued |
This wooly bear caterpillar was crawling on the asphalt road. I carefully moved it to a leaf off, commenting that I do not understand why a caterpillar would crawl on asphalt. Why wouldn't it turn around and stay in the vegetated area?
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| Another one |
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| Another one |
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| Another one |
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| Another one |
Random stuff.
I am not traveling any more this year. Maybe next year we'll do a roadtrip to Yellowstone.
An appointment with the oncologist has been confirmed on June 4th.
Thursday, May 29th - 6 Weeks Since Surgery
Today marks a turning point. Today is the glorious day that returns me to my healthy habits and it feels fantastic! I got up at 5 AM, weighed in at 116, took two Seed probiotic-prebiotic capsules with a glass of water, waited half an hour, then had breakfast and went to the pool.
I have two favorite breakfast meals:
Oatmeal
35 grams whole rolled oats
1/2 cup milk
1/2 cup coconut milk
1 tbsp chia seeds
1 tbsp hemp seeds
1 tbsp ground flax meal
handful of dried cranberries or raisins
1 tsp cinnamon
dash of ground cardamom and ginger
Soaking these ingredients together for 12-24 hours in the fridge softens and infuses the oats and seeds with the sweetness of the fruit and richness of the spices. These spices also aid digestion and kidney function.
In the morning, stir and heat in the microwave for 2 minutes, then add chopped walnuts, pumpkin and sunflower seeds. You can also add a sliced banana for more natural sweetness, potassium and fiber.
Yogurt
3/4 cup organic yogurt
same as above - chia, hemp, flax, spices, walnuts, pumpkin and sunflower seeds
1/3 cup frozen or raw blueberries
sliced banana
I start with plain yogurt, the fruit is sweet enough for my palate, which has adjusted since I cut way down on sweets. I've grown to love the tartness of plain yogurt.
Today I had oats with all the usual seeds, nuts and spices. No banana, only dried cranberries. We'll see how my recently repaired gut handles it. It's been two hours and so far no reaction - no bloating, gas, discomfort. I'm feeling good!
Psychologically this is huge. For six weeks, I have tolerated surviving on foods I do not consider healthy...canned peaches, canned green beans, white bread, Ensure protein drinks (full of crap!) For six weeks, I have felt stressed about eating garbage while I have two conditions that impair my immune system. Sarcoidosis is unpredictable. There is not enough research and there are too many variables.
Today I savored the textures and flavors I have grown to love and appreciate since a dietician guided me in 2022 in my quest for a healing, anti-inflammatory, kidney-friendly diet. Today I felt good about what I was eating. Guess what, people - it feels good to feel good!
Being in the pool in the early morning was as luxurious and therapeutic as I remember. Oh, how I missed it! There is nothing better (for me) than moving through that perfectly warm mineral water. It's so gentle on the joints. Easily jogging in water, moving arms in a swimming motion in the deep area, while listening to my favorite playlist, it is a meditative hour well spent. Starting my day like this makes me feel healthy.
I gaze at the sky and watch it change as the sun breaks through the clouds, as bits of blue start to appear. I watch the birds and they watch me. Doves have made a nest in the cabana.
Sunday, 1 June 2025
May I confess hear that I feel a slightly ominous dread about the encroaching oncology appointment. Laying awake in bed, the conversation spins in my imagination. I tune it out with Nature Sounds and Sleep Spa Radio. It basically rambles on, repeating the themes in this journal. This doctor knows only what tests and surgical notes say about me. He does not know my chosen philosophy, my faith, my will. I will bring the Advanced Healthcare Directive along with a CD of all the radiology that has been done. I will establish a rapport with him. He is an ally. He is one of the doctors I need to support my End of Life Act.
What are my questions?
- Have you ever treated a patient who has lymphoma and sarcoidosis?
- How painful does lymphoma get? (I should not have googled this, the images of extremely swollen lymph glands and rashes is horrendous.)
- At what stage does it become painful or disruptive in other ways?
- Does it hurt when it spreads to the spleen, liver, or lungs (the usual suspects)?
- What stage would you estimate I am at based on what is known from bloodwork, scans, and pathology reports?
- Let's assume the swollen nodes above and below the diaphragm, which puts me at Stage III according to the American Cancer Society - how much quality time could you estimate?
I expect he's going to want to tell me that it can be cured with chemotherapy, immunotherapy, and radiation. He's going to need a PET scan to know the full scope.
I'm going to let him know respectfully that I need a break from invasive procedures and I will consider getting the lab work done later this year. He's going to look at my husband, who will solemnly and quietly support my wishes, though it saddens him. He understands perfectly well how much trauma my body has suffered since January 31st.
"It feels good to feel good," I told him last night as I lay awake in bed aware of how comfortable my body felt. No aches or pains. It has been a long time since I felt this comfortable in my body.
Please enjoy one of my favorites...this is the theme song composed by a friend of a friend, Soheil Forouhi for my Saardu movie pitch, and public domain images courtesy of NASA and the Hubble Space Telescope.
Monday, June 2nd
I have officially announced my retirement!
Tuesday, June 3rd
Thirty-two hours of bliss. The sweet bliss of ignorance. That's how the minutes between this morning and tomorrow afternoon occur to me. Every visit with a doctor ends with information I wish I didn't have in my brain. What will the oncologist say tomorrow that I don't want to hear? I have done what I can to brace myself. It is one thing to imagine what the recommended treatment would be, quite another to hear it from the specialist.
It is awful sitting with these doctors who want to present such an optimistic future (with treatment), when every ounce of my being is unwilling to go that way, and my poor, sweet husband is sitting next to me, and I can just feel what it does to him to be trapped in the middle of this. He's such a dear man, holding my hand, supporting me, respecting my wishes, all the while wishing his own which are quite opposite of mine. Well, he is not the one facing a lengthy downward spiral into suffering!
Every twinge in my body makes me wonder. C'est la vie. For one more day, I was able to enjoy my happy place...
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| author in the pool |
Wednesday, June 4th
I have never been happier to be wrong. According to the oncologist, my lymphoma case is stage 2. Staging is not based on the fact that I have swollen lymph nodes above and below the diaphragm - he said they would have to be really swollen to the point that they are causing pain or interfering with breathing or something like that. And the best thing about stage 2 is that they don't treat it! They only monitor it.
I can cope with a blood draw in August. He gave me a lab order and said come and see him in two months.
My mind is blown. The oncologist is not recommending chemo!!! I don't have to dig in my heels about it! I can relax, and I can even hope that good nutrition, hydration and exercise will prevent this disease from progressing. I am even feeling optimistic enough to imagine that in a year lymph nodes that are swollen right now will not be! I can imagine this is a realistic expectation because I had chronic kidney disease for years and with diet, hydration and exercise, my kidneys are now back to normal function! I got this!
O-o-h o-o-h child, things are gonna get easier
This song got me through 73 days in the NICU when my son was born three months early.
As far as I'm concerned there is no longer a need for me to continue this journal. The roller coaster has stopped. I am getting off this hella crazy twister!
Future posts about what I am doing, when I have an update that is worth sharing, it will be on the home page as a new post. I am very excited about being able to write full-time now and I am going to a pitch festival this year to sell my scripts!
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