Keeping Abreast Post-Op

May 31, 2012 § 3 Comments

softening what’s raw: thescarproject.org

It’s been a strange few weeks of recovery since surgery. Time has taken wing as much as it’s held me in one place.  My body feels tired and raw but fresh and new.  Looking at my chest I feel no judgment; instead, I’m embracing the altered shapes of my experience.  A strong sensation stirs in my heart whenever I look in the mirror. It is this centre that outshines each body part, each change, and each scar.  Four lymph nodes were removed during the operation, and with their position close to a central nerve, I’ve been experiencing a steady burning sensation along the underside of my left arm.  My left breast ranges from entirely numb to unduly sore, but motion is improving and pain diminishing overall. With self-love, I accommodate for the changes and pains in my body and mind.

Today, I met my oncologist for the first time. We had a frank discussion regarding post-operative treatment. In my last post, I celebrated the absence of any detection of cancer cells in the removed lymph nodes with almond milk and chocolate; however, it was an uncertain festival of delights. My oncologist reminds me that the absence of detection leaves no indication of whether cancer cells remain in my body.  There could be billions.  In the size of a pinprick, perhaps even a pinprick missed in the examination of my lymphs, a million cancer cells could lie. There’s no conventional way to determine if I’m now living with the disease.  Any treatment I undergo from here would be with eyes to cure what can’t be detected but what might be there.

The bad news is that after examination of the tumour removed from my left breast, the cancer cells were classified at grade 3, which means they are the most aggressive kind of cancer cell. According to statistics, 50% of women with grade 3 cancer cells die within 5 years of their diagnosis. With that diagnosis and without knowing where the cancer could now potentially stir, (perhaps nowhere, perhaps everywhere), the oncologist has advised me to have the gamut of conventional therapy: six months of chemotherapy, followed by substantial radiotherapy, and five years of hormone therapy.

Surgery itself has been psychologically and physically challenging.  It pales in comparison to the battle a patient undergoes with chemotherapy, radiation and hormone therapy.  Whilst different patients react in varying degrees, here’s a starter to the typical side effects of chemotherapy. After one dosage, a cancer patient usually experiences mouth sores and nausea that prevent her from eating and drinking normally.  Chemotherapy targets all rapidly dividing cells.  That includes cancer cells, but hair cells, stomach cells and blood cells too.  Extreme vomiting and hair loss all over the body is common.  Since the drugs kill white blood cells, the immune system becomes compromised, and a patient develops an increase risk of all kinds of infection. Other side effects include extreme fatigue, depression, chest pain, bleeding gums and nose, bleeding from other parts of the body, muscle aches, breathing difficulties, shivering, flu-like symptoms and infertility.

Radiotherapy can either be administered externally to a localized part of the body, or taken internally by drinking a liquid. Externally, radiotherapy often causes discoloration of the skin, much like a sunburn that doesn’t go away. Like chemotherapy, radiotherapy affects not just the cancer cells, but also other cells in the body. Like all these therapies, some people have only mild side effects, whilst others experience those that are considerably more severe. Most patients experience fatigue, for the body is repairing the damage to healthy cells and coping with low levels of red blood cells. Other side effects include a dry mouth, breathing problems, depression, infertility, impotence, or long term soreness and pain.

Since my cancer cells were estrogen-receptor positive, which means they need estrogen to grow, a drug called tamoxifen has been recommended to me to be taken orally over five years. Tamoxifen interferes with the activity of estrogen in the body.  The known serious side effects of tamoxifen include blood clots, strokes, uterine cancer, and cataracts. The drug would put my body into early menopause. Some experience headaches, fatigue, nausea and vomiting, vaginal dryness or itching, irritation and skin rash. Tamoxifen often causes weight gain.

Put all three together, and that’s a lot of nasty, life-altering side effects.

I’ve been debating whether I will undergo these treatments for the past three months.  I’ve been reading and discussing the treatments with nurses, doctors, and other cancer patients.  I’ve read statistics.  I’ve weighed the options.

Today, I decided to say no to all therapies offered to me by my oncologist.

That isn’t to say I haven’t taken her recommendations seriously.  I would never underestimate the force of cancer, nor do I question my doctor’s expertise and her concern.  I realize that although the breast tumour has been removed surgically, I could still be living with this disease and cancer cells, whilst I imagine them weak in visualizations, are incorrigible little buggers. They don’t listen to the cells surrounding them; they resist communication with a body that wants them to die; they are headstrong and primitive in their will to live and reproduce.  I know what this disease can do once it reaches the brain and liver; I’ve witnessed it personally with my mother’s disease. I am taking my cancer seriously. My life has forever altered because of it. I am treating my illness consciously, daily and in ways in which I hold faith.

In the next few posts, I will be investigating, explaining and sharing information on the therapies I’m now undergoing.  These therapies do no proven harm to the body and come with few or no side effects.  They work with the body: with its immune system, with the liver and blood, with the mind and the spirit. They improve health, well being and quality of life. I am working with skilled practitioners and adapting my treatment to my budget in the long-term.  Whenever possible, I will be accompanying my posts about therapies with peer-reviewed scientific research and links as well as bibliographies of literature I’ve been reading.

I realize I am not an expert in cancer.  I studied literature, yoga, art and teaching, and I have little background in science past high school biology.  Although I’ve been reading steadily since my diagnosis, I realize I am nowhere near as knowledgeable as many of you reading this post.  That said, whilst I appreciate comments, support and feedback from anyone, I’ve decided not to get into discussions regarding my decision not to continue with conventional cancer treatment.  I am open to comments regarding anything I post here, to any errors or counter-evidence, to valid research, and/or personal stories.  However, I would prefer if no one writes me with advice that suggests I change my mind and undergo what I have decided to reject, namely radiation, chemotherapy and hormone-therapy.  I know that these notes and words of advice often come with genuine care for me. Please consider however that my oncologist has informed me that according to statistics, the recommended conventional therapies combined would only increase my survival within five years by less than 12%, (some studies show a smaller percentage in survival rate long term).  The stress and strain and suffering from the side effects listed, in my opinion, outweighs any benefits of these therapies. I can’t help but sense that they may even contribute to a deterioration of my will to keep on keepin’ on.

No cancer care comes with a lifetime guarantee.  Even if I underwent the full monty of chemo, Rx, and drugs, cancer has proven to survive conventional treatments again and again.  In some cases, cancer cells have learnt to adapt to chemotherapy drugs and the treatment then loses its effectiveness. Some literature suggests cancer cells that outlive chemotherapy come back with a vengeance; like many things, they learn to adapt in order to survive.

Each cancer journey is individual.  Even with my decision for my own treatment, I would never advise someone against undergoing the conventional therapies I’ve rejected and try to convince her otherwise. I would support her in choosing the therapies that have been recommended to her and she believes in.  Trying to persuade her against chemotherapy could only initiate internal conflict, which would compromise her healing and receptivity to the drug.  My decision to reject chemotherapy, radiation and tamoxifen is based on my individual circumstances.  All cancers, and all cases of cancer, are unique. I am happy to share what I am learning, what I am doing, what I have read or witnessed, but I post nothing here with the intention to persuade others.  Instead, my intention remains to share my personal journey of cancer, to process the feelings, to articulate the experience, to digest the range of information I bite into daily.

Whatever our journeys, with cancer or without, with someone who has had or will have cancer, or in a life blessed free of this disease, may we all be healthy, happy and heroic.

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§ 3 Responses to Keeping Abreast Post-Op

  • Hi Nancy!! Jason Botkin sent me your post as I am the tattoo artist he told you about… I would be honored to help you, I have been told tattoos can hide scar tissue successfully… The only experience I have is tattooing severe stretch marks caused from pregnancy and the skin was inked just fine. If you would like a meeting to talk that would be best!! I am out of Canada for the month of June, but I will be back in Montreal for July! Email or call anytime in July…art@kristabursey.com // (514) 513-9895. I wish you well on your path of healing, I admire you for your warrior strength in this physical battle! Ox ❤❤❤

  • Bravo Nancy. Do it your way. Bravo.

  • donna Sorbello says:

    I just don’t keep up on facebook but a bunch of notices showed up and just read your May 31st entry. Will email-but thank you for this update. I continue to admire your bravery and the understanding you’ve brought to your own difficulties. Love, Aunt D

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