Understanding Ongoing Maintenance Chemo for Cancer Treatment
6 cycles of chemo done. 24 to go!
Time Line of This Chapter:
Feb 2020 – Oct 2021
- The challenge of maintenance chemotherapy over an approx. 24 months.
- The words of a folk song and their effect on my thinking.
- Taking responsibility after chemo.
- Looking at the various brain wave frequency lengths associated with stress, sleep, mindfulness and meditation (which includes prayer).
- Two complimentary books to read.
After completing six cycles of chemotherapy, I still have 24 more to go! But maintenance chemotherapy is like a superhero for my body. It uses its superpowers to seek out and destroy any remaining cancer cells that may still be lurking around after the initial treatment. It’s like a crime-fighting one-man-band, but with a lot more science involved! By targeting and killing any remaining cancer cells, maintenance chemotherapy helps ensure that they don’t have a chance to come back and haunt me.
The initial treatment, which involved a grueling six months of the intense combination of rituximab and bendamustine, was finally over. However, it took an additional three months for the full effects to dissipate, but of course, everyone’s experience is unique. Speaking of Rituximab, it’s also known by the brand name Rituxan and is used to treat various autoimmune diseases and types of cancer.
Maintenance treatment, on the other hand, was a breeze in comparison. Every two months, I had to take my dose intravenously (every two months instead of every one), which worked out to be just under two months (28 days times two cycles). The first few cycles were a piece of cake compared to the initial six, but as time went on, I found myself feeling more and more run down and brain-fogged.
Another thing that was part of my maintenance treatment was an IV of pentamidine every month to keep me safe from pneumonia, as by this time, my immune function was probably poor. Pentamidine is an antibiotic that is very slow to administer. The veins do not like it done fast, so 300 ml. would take almost five hours, which gave me plenty of time to read, chat with other patients, or sleep.
What I found interesting during the whole chemo treatment was that afterwards, well-meaning people would comment on how well I looked. This was in contrast to how I was feeling. All I can say to this is that I think chemo sort of induces a flush of wellness. Within each cycle, there were sub-cycles, and it would take me about four days to bounce back from each one. But as mentioned, they did wear me down somewhat. Whether or not I had a flush of wellness and rosy cheeks, the treatment was still taxing.
One bonus was that while each rituximab had to be done in Dunedin Hospital, the pentamidine IV (only it, on the alternate months) could be done at the nearby Dunstan Hospital. This meant an hour’s drive as opposed to four hours. The “feel” of Dunstan is that of a small cottage hospital, quite different from Dunedin’s city-style feel. And more relaxing, with its views out of the window being more in keeping with nature. Healing in its own right!
However, on the drive home from Dunstan, more often than not, tiredness would overcome me. So I learned to take a slightly longer route home on the other side of Lake Dunstan. Just before the Lindis River that runs into the head of the lake, I’d stop for a nap under the shade of willows. It was very welcome during the intense summer days.
One up two down…
The whole maintenance chemo experience reminded me of the lyrics of a folk song written by my friend, the acclaimed composer/singer, Martin Curtis. Until recently he lived up the nearby Cardrona Valley.
I think of the song as, One up, two down… and the song would roll on at quite a pace.
And that’s how chemo felt! For every one I’d feel a gain, but as time went on I’d feel slippage back. But not to a non-remission state – it all related to the effects of the ongoing treatments. I used to wonder if my body would tolerate them forever. Maybe, maybe not! I guess the cut off point of 24 months was in light of the experience of others.
James Patterson purchased the Cardrona hotel and became a local legend. Known as Jimmy, he owned the hotel from 1926 until his death in 1961 at the age of 91. Making him the longest serving publican in Cardrona.
He was famous for controlling the amount his patrons could drink. It would depend on which direction they were traveling. Men going up the valley over the Crown Range were only allowed one drink. While those traveling down valley to Wanaka were allowed two. (He preferred to not supply any alcohol to women).
And I’d add to this statement quoted earlier:
- “our thoughts affect our immune system”,
- “our thoughts, especially our subconscious and unconscious ones, affect our immune systems”
About halfway through my maintenance chemo I had thought and asked myself, “is this repetitive chemo keeping me alive and relatively healthy?”
The next thought was, when the chemo ends then I’ll be by myself, having to draw on whatever I can muster of my own resources.
Intellectually I know I will not be abandoned by the health system. So I held that thought.
But there is something very empowering about taking extra steps towards the best probable outcomes. And in going there – taking on the work. Taking responsibility to new levels possible from a solid base of remission.
What unfolded next was a real ‘shot in the arm’ for me: I asked my lovely oncologist if I could have a second round of counseling and therapy, just like I’d done after my initial (potentially terminal) diagnosis/prognosis.
And, to my delight, she again said “Yes, sure!” (Taking up the story of the second offer will be the beginning of the next chapter of my saga.)
On the first occasion I was fortunate enough to benefit from regular sessions with a very experienced (and grandmotherly!) counselor for a little over a year – right up until the moment she retired, shortly before I began my first six intense treatments.
You could say it was about learning about how to die well, even. But the substance that had a lot to do with empowering me had aspects such as the personalities of my parents, and how they built my beliefs, my stories – and, apparently, my future too! All jokes aside, I’m grateful to my parents for all they taught me – it really did help me to accept death as part of life.
Fortunately back then, after each session I was fit enough to bike from Clyde’s Dunstan Hospital, to Alexandra down the start of the Otago Central Rail Trail, through Alex., and back to Clyde via the shaded and sometimes swooping River Trail, on the true right of the Clutha.
Perfect for self debriefing!
A common narrative of the day
Let me take a few moments to ponder the narrative of the day, that stress is often considered a cause of cancer and tumors. And that mindfulness and meditation can help to handle the illness and its progression. And of course the effects of treatments.
I’ve had so many messages telling me that practicing mindfulness and meditation are the bee’s knees – but very little information on the “how” and “why” of it all. I’m particularly curious because I’m the kind of personality type that finds reassurance in understanding processes – so I’m hoping to get some answers soon, before I go completely bee-zerk!
As for the immediate me, I’m potentially a living testament to the power of something beyond positive thinking. Having been told I’ve achieved remission through my attitude… That said, I’m not suggesting that I have the panacea or that everyone can rid themselves of cancer with a smile, or the below – but I think it’s certainly worth giving it a try! After all what constitutes attitude?!? Noting especially that if a negative outcome starts to set in, it’s not a good idea to beat ourselves up either. Again consult the relative medical experts.
Looking at the various brain wave frequency lengths associated with stress, sleep, mindfulness and meditation (which includes prayer).
A synopsis of all I’ve read:
Brain wave frequency and amplitude can have a significant effect on healthy gene expression and the production of new cells. The frequency and amplitude of brain waves can influence the release of hormones and neurotransmitters, which in turn can affect gene expression and cell growth. Brain waves can also influence the activity of enzymes involved in gene expression, which can further affect the production of new cells. Therefore, the frequency and amplitude of brain waves can have a direct impact on healthy gene expression and the production of new cells.
The brain waves that are related to stress are Beta (13–30 Hz) and Alpha (8–13 Hz). Beta waves are associated with alertness, concentration, and stress, while alpha waves are associated with relaxation and meditation. Low beta keeps the automatic processes that run our bodies on track. High is often referred to as “monkey brain”. And to my mind the state to recognise and then exit stage left!
Alpha (8–13 Hz). Then there is Theta (4–8 Hz), Delta (0.1–4 Hz) and Gamma (30–100 Hz). Alpha waves are associated with relaxation and meditation, theta waves are associated with deep relaxation, dreamless sleep, and creativity, delta waves are associated with deep, dreamless sleep, and gamma waves are associated with heightened focus and problem-solving.
What is relevant to myself is that (intuitively) from 2017 onward until today Jan. 2023, is that I regularly meditate, using guided audio, that is designed to facilitate alpha. Which is thought to be the bridge that connects them all. And before that… well 12 years of yoga 1-3 hours a week. This is how I roll, knowing it won’t be everyone’s cup-of-tea.
Following on from my evolving thoughts on brain wave frequency lengths as they relate to stress, mindfulness, sleep and meditation , I then researched this question: Can aged genes and cells turn into cancer tumors?
Yes, aged genes and cells can turn into cancerous tumors. Cancerous tumors develop when damaged or aged cells grow and divide in an uncontrolled manner, forming a mass of cancer cells. Aged genes, which can be caused by environmental factors and/or genetics, can cause mutations in the cells that can lead to cancer.
Can the expression of beta brain wave frequencies interfere with the destruction of aged genes?
No, the expression of beta brain wave frequencies cannot interfere with the destruction of aged genes. Beta brain waves are associated with alertness, concentration, and stress, and their expression does not impact the destruction of aged genes. However, beta brain waves can influence gene expression and cell growth, which can in turn affect the production of new cells and the destruction of aged cells.
Much of the above distills what is covered in detail in these two complimentary books below. I used artificial intelligence software to save myself a lot of compilation and summary work with correct grammar. Thankfully as a cross check on facts the match was near identical:
I loved how every topic has references back to the research.
Best Health Book of 2018 – American Book Fest. Best Science Books of 2018 – Bookbub. Every creation begins as a thought, from a symphony to a marriage to an ice cream cone to a rocket launch. When we have an intention, a complex chain of events begins in our brains. Thoughts travel as electrical impulses along neural pathways. When neurons fire together they wire together, creating electromagnetic fields. These fields are invisible energy, yet they influence the molecules of matter around us the way a magnet organizes iron filings. In Mind to Matter, award-winning researcher Dawson Church explains the science showing how our minds create matter.
By Dawson Church
This is a book that I plan to reread, and come back to often as an inspiration.
The New York Times bestseller everyone is talking about.
By tapping into traditions of meditation and mindfulness, author and spiritual teacher Michael A. Singer shows how the development of consciousness can enable us all to dwell in the present moment and let go of painful thoughts and memories that keep us from achieving happiness and self-realization.
The Untethered Soul begins by walking you through your relationship with your thoughts and emotions, helping you uncover the source and fluctuations of your inner energy. It then delves into what you can do to free yourself from the habitual thoughts, emotions, and energy patterns that limit your consciousness. Finally, with perfect clarity, this book opens the door to a life lived in the freedom of your innermost being.
By Michael A. Singer
This is written with the best of intentions, but let’s be clear – I’m not claiming to have found a miracle cure for serious illnesses. Far from it. Instead, I’m just sharing my own experiences and throwing out a few ideas, all with the goal of promoting good mental health. Who knows, maybe it’ll even have a positive impact on our physical health too!
BTW current state of health, as of Jan 2023, is pretty good!
The next post/chapter will be titled something like, “Acceptance and Committment”
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