My Cancer Journey – Part 5

Coping with Radiation Therapy

In order to administer radiation to the precise sight of the cancer, the area must be immobilized. Because my cancer was located in my neck, a mask was made to clamp down my head, neck and shoulders to the table on which I lay to receive the treatment. I could breathe (of course) and I could open and close my eyes. That was it.

Clamped down and ready for radiation.

A tattoo was placed on the left side of my neck to help the technicians target the area. Probably the only tattoo I’ll have in this lifetime!

The logic of the procedure makes sense. But the emotional impact of restraint is a separate issue. (See part 4 for details) I had to find a way of coping, so I could avoid sedation.

The restraint would last for about 15 minutes, during which time I would enter and be withdrawn from the machine twice. To stay calm I used two mental devices.

1. Logic Meets Synchronicity

It’s funny how life has a way of serving us up the very things we didn’t know we needed. As luck would have it, several months prior to my diagnosis, I had started a daily “I am” mediation. I decided to use this during the first of the two times I was sent into the machine.

I kept my eyes closed throughout the entire procedure. Seeing the mask that restricted my mobility only reminded me that I was restrained. Closing my eyes helped.

I regulated my breathing, focused on my body’s ability to heal itself, and repeated the words “I am perfect health. I am that, I am.”

Understanding the full capacity of the brain’s power is still evolving. However, research has shown the impacts of positive (and negative) thinking on our overall health. I decided to use the power of positivity.

2. Talking To My Cancer

I acknowledged that the cancer was a part of me. An uninvited, unwelcome part, but none the less attached to and feeding on my body. So, I decided to treat my cancer with kindness. During my second insertion into the machine – the lengthiest part – I talked to my cancer.

I personified this unruly growth of unhealthy cells, addressing it gently, the way one might talk to a child. I told it that I understood it didn’t want to be there any more than I wanted it there. Together we would work to set it free.

As we lay there together on the cold, hard table, I would help it to detach itself from the trap of my body and dissolve into the air. Sweet freedom for us both! Sound crazy? Maybe. But, if the alternative is fear, denial, and anger, I would rather choose peace.

Treatment vs Healing

The whole point of cancer treatment is to eradicate (or inhibit the growth of) the cancer. Treatment is aggressive and brutal. Radiation both cures and causes cancer. Chemotherapy kills healthy cells as well as the cancerous ones. Thus, the immune system becomes immensely compromised.

Overall, my treatment period was November 2019 through March 2020, relatively short compared to other patients. But treatment is not the same as healing. While I was in treatment, I was getting progressively sicker.

The radiation was burning my mouth and throat. The cisplatin used for chemotherapy caused ulcers on my tongue, and multiple other side effects. It became more and more difficult to eat. Food burned my mouth, tongue, and esophagus. Eventually even drinking water caused intolerable pain.

It became more and more difficult to swallow. The scaring was literally closing my throat. At the lowest point, I couldn’t even swallow my own saliva, what little my glands managed to produce. The treatment also does permanent damage to the salivatory glands.

From the very beginning my doctors assumed I would eventually need a feeding tube. From the very beginning I was determined to avoid it. A feeding tube would only add further complications and challenges to an already overwhelmingly difficult daily regimen of selfcare. In addition, for some patients, even after treatment ends, the tube becomes permanent. The doctors didn’t tell me this, but I’d done my research.

The old saying “use it or lose it” applies here. If we stop using the body’s complex process involved in eating, we literally “lose it”. Without being exercised, the muscles of the mouth, tongue, and esophagus simply atrophy. Some patients never recover the ability to eat normally.

For as long as I could, I diligently followed the doctor’s and dietician’s orders. I kept detailed records of everything I consumed: calories, fluids, medicines. I focused on nutrition, not just calories, because I had to work hard to bolster my immune system (what was left of it).

But as my treatment progressed, consuming enough nutrition became a monumental task. And, once the regimen of radiation and chemo therapy (the treatment) was completed, the doctors were done. The healing was left almost entirely up to me.

During the healing process I could do little more than eat and sleep. I lost 33 pounds in 3 weeks. I was dehydrating and fainting on a regular basis. By then I was on Oxycodone for the pain which, contrary to what the “controlled substance” classification might lead you to believe, is actually quite easy to get a prescription and refills for. (More about this in my next post). Being on Oxycodone meant I could not drive – to appointments, to the clinic for fluids (3-4 times weekly), to the ER (when I was choking on my own saliva and was admitted to the hospital), to the pharmacy, to the grocery store. Over time it became very clear that the “healthcare” system is designed to meet the needs of the system first. Patient needs, desires, and support are secondary.

My friends and family, along with my own stubborn determination, and the loving support of the nurses (not the doctors) literally saved my life. The nursing staff at the treatment center listened, responded, and on one occasion (out of concern and caring) even recommended that I take my chest pain very seriously, even though the doctor had responded “it’s just anxiety”.

What’s Next?

In an upcoming post we’ll take a look at opioid dependency and the problem with whack-a-mole medicine. Recovery during the Covid pandemic. Recovery during the fallout of a land hurricane. From oncology to cardiology. And, on a happier note, connecting with others and finding meaning in a world that has been shut down. Stay tuned.

Post script: The “I am” meditation I practice is taken from the spiritual literature of the Torah, reportedly God’s response when Moses asks His (God’s) name. While I do not subscribe to any particular religion, I do believe that there are powers greater than ourselves in this universe. And I believe there are powers even within ourselves that we do not yet understand. What you believe does not matter nearly as much as that you believe. To learn more about the practice, simply do a web search on I Am Meditation.

9 thoughts on “My Cancer Journey – Part 5

  1. Shirley, You are so strong, I admire you for that! Keep fighting! All my best to you are in my prayers.


  2. This is staggering but so valuable. Any patient going through radiation treatment (especially of the head and neck) should read your work! You are amazing and I hope you are feeling much better. I hope there will be a time you return to the Rakow Rebel group. We would love to see you.


  3. Thank you, Maeleen. I am feeling much better and to date it appears that the cancer is in remission. I think it’s a shame that patients have to seek out our own information in order to get the whole story about treatment. Perhaps doctors don’t want to overwhelm or frighten patients by giving them too much information all at once. But I think it’s unfair of them to make that assumption. I am a person who would rather have the whole truth so I can make my own life decisions.


  4. Shirley, I’ve read the entire account and want you to know how much I admire your courage through process, as well as your willingness to share it so openly. There are so many lessons here! I’m so glad you’ve gone through it and come out the other side, even with all the sharp corners and blind alleys you encountered in getting the care you needed. I will be reading your next post as soon as it’s up here! Thank you! Nadja

    Liked by 1 person

  5. Dear Shirley, I have finally caught up with your last two posts – what an extraordinary journey! I admire your grounded reflections and advice. Your writing will be a light for others who follow this brutal path. I hope that poetry has been, and will continue to be, a source of comfort to you. my best wishes to you, Janice


  6. Dear Shirley, I have finally caught up on your posts – what an extraordinary journey! I appreciate both the clarity and honest emotion of your writing. I have no doubt this will be a light for others following this brutal path. I trust that poetry provides moments of comfort and beauty for you. with admiration and blessings for your healing, Janice


  7. Thanks for reading, Janice. The next post is coming soon. It’s been delayed and is long overdue because of the subject matter – opioid withdrawal. I am so very thankful to my readers and to all the medical professionals that helped me survive the journey.


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