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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Celebrating with Fresh Almond Milk and Raw Coconut Chocolick

May 21, 2012 § Leave a comment

I’ve been away from blogging this past week.  To tell you the truth, since last Wednesday, I’ve taken a much needed holiday from thinking about the Big C.  I finally received the results of the lymph node biopsy.

For those of you unfamiliar with the territory, the lymph nodes are part of  a network through the body that serves as its main vessels of immunity. In creating white blood cells, carrying fluid from tissues in the body, absorbing fat and moving that fat to the circulatory system, a functioning lymphatic system is central to a healthy body. The channels of lymph ducts and vessels go just about everywhere. When we’re sick, the glands of the lymph often swell, for the body fills them with extra white blood cells to fight off viruses. Since the lymphatic system isn’t connected to any organ to pump the lymph throughout the body, it’s important to exercise and stretch, especially the chest area, in order to keep the fluid moving.  Wearing tight clothing can constrain the lymph.

That said, the easiest way cancer can metastasize, or spread, is through the lymphatic system.  Cancer from the breast can leave the site of the tumour and travel to the sentinal lymph nodes underneath the armpit.  Since the lymphatic system circulates throughout the entire body, it’s easy to see why cancer cells in the lymph nodes would not be good.

Thankfully, the ones removed during my surgery showed no signs of cancerous cells.

Whilst the stages of cancer might be occurring in other areas of my body, the clear return of the biopsy is definitely a reason to celebrate. So, in honour of my awesome lymphs, I’m sharing a couple of yummy recipes. Both are raw, nutritious and good for your lymphs.

Almond Milk

Homemade almond milk is surprisingly appetizing and easy to make.  All’s needed is almonds, water, a blender and a sieve or nut milk bag.

  1. In a jar, add 1 cup of almonds to 3 cups of filtered water.
  2. Let stand in the fridge overnight.
  3. In the morning, strain the almonds from the water and place them in a blender.
  4. Add 3 cups of fresh filtered water.
  5. Blend.
  6. Pour mixture through a sieve, separating the liquid from the husk.
  7. Use over cereal, with lattes, or fresh on it’s own.
  8. Enjoy!

Raw Coconut Chocolick

I’ve called this chocolate, “chocolick”, in honour of my two-year old nephew, Simon, who can’t quite pronounce “chocolate” yet. Sugarless, raw and good for you, you’ll be delighted how delicious this stuff tastes.

Coconut oil is anti fungal and so a great help if you have problems with Candida albicans. It is also anti-viral and anti-bacterial. There are studies to show that 3 teaspoons a day can prevent Alzheimer’s disease. Cocoa has properties that fight cancer, and xylitol is a natural sugar substitute that causes no harm to the body.

INGREDIENTS

300 gm and coconut oil
1 cup cocoa powder
½ cup xylitol or to taste
½ tspn pure vanilla essence

METHOD

  1. Lightly soften the coconut oil and tir in the other ingredients
  2. Place in a container in the refrigerator until nearly firm.
  3. Score into bite sized pieces and allow to firm fully.
  4. Share and Enjoy!

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The Guesthouse

May 9, 2012 § 4 Comments

I’ve stormed through a sierra of feelings in the past couple weeks. Perhaps I’ve seen the worst of this battle with cancer, but a journey such as this is never simplistic.  The lymph node biopsy results still await, and the future is uncertain as ever.  I have been doing a number of things for my wellbeing: mistletoe therapy, naturopathy, acupuncture, massage, blue light therapy, homeopathy, psychosynthesis, reiki and continuing with journaling, restorative yoga and meditation. I’m beginning to explore ayurvedic approaches to cancer, body-talk therapy, emotional freedom technique, emotional healing, hyperthermia and enzyme therapy. The more I read and learn, the more I feel empowered.  But sometimes it seems a degree of this journey lies outside of my own hands; it seems I am not entirely conscious or in control of all that passes through this body.  Feelings pass through me and at times pull me, and the more I resist, the more suffering lies beneath my resistance. There lies a delicate balance of surrender and control in this journey through this tributary of the river of my life.

As I paddle along, I wish to stay constructive in my outlook; submitting to a consistent gloomy disposition in confrontation with cancer is likely not constructive. But not acknowledging the feelings that come, or glossing them over with a forced positivity can hardly create a kind of shield agains the dark forces of disease. My friends and family wish for my wellness and they want to see me well, so when they say, “be positive” or “smile”,  I appreciate it all – I feel gratitude, and I know that on some level positivity helps in healing.  But I can’t help to sense there’s something missing in the  “smile-no-matter-what” approach. At one level, smiling works in dealing with physical pain and “not sweating the small stuff” is a wise adage to follow, but at a deeper level, where I feel deep healing takes place, forcing a smile can at times fall short. If an emotional pain needs acknowledgement, it will persist, usually hovering in the emotional field until it turns into a physical symptom.  Positivity has it’s value; there are some emotional states it’s simply unhealthy in which to sink, some pains that can be effectively alchemized through upturning the corner of the lips. But there lies more to a life journey than smiling. Khalil Gibran writes his chapter “Joy and Sorrow” in The Prophet, “The deeper that sorrow carves into your being, the more joy you can contain. / Is not the cup that hold your wine the very cup that was burned in the potter’s oven? /And is not the lute that soothes your spirit, the very wood that was hollowed with knives?”

Remember The Truman Show?  Remember at the beginning of the film where Truman lives in a literal and metaphoric bubble, enfolded in circle upon circle of contrived grins and shallow encounters, encapsulated in the repetition upon repetition of good morning, good afternoon and goodnight? The television show that has spun Truman has wielded him into a false personality, the bubble has him believing things he hasn’t truly chosen for himself. It seems the whole universe in which he lives has succumed into a dizzying disease of artificiality until, one day, Truman wakes up and realizes he isn’t happy after all. Don’t you think sometimes it takes a little discontent to realize there’s a life outside the bubble? Or even if we are not living in a televised bubble, metaphorical or not, it takes a bit of sorrow to then feel joy, a pain to carve out the flute that allows a joyful song to resonate through our lives. Even babies arrive in this world in tears. Some people favour joy over sorrow, others sorrow over joy, but Gibran says they are inseparable: “When you are sorrowful, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.” William Blake, in Auguries of Innocence similarly prophesizes:

Man was made for joy and woe
Then when this we rightly know
Through the world we safely go.
Joy and woe are woven fine
A clothing for the soul to bind.

Two weeks ago, upon my return to England from holiday, I visited the fertility clinic at the local hospital.  If I undergo radiotherapy and chemotherapy, it will affect my fertility. Upon my diagnosis, the nurse immediately mentioned the possibility of freezing my eggs.  I am young, childless, and I would like to have a baby.  I was told the process of freezing my eggs would be covered by national health insurance.

Perhaps the receptionist’s cold reception at the fertility clinic that day might have had something to do with my reluctance to embrace this truth of potentially losing the possibility of having children.  The woman looked me up and down, squinted her eyes, asked my name and then said, “Where’s your partner?”

“I am here because I have cancer.”

Her cold stare and abrupt manner remained unwavering.

“Why is she staring at me like that?” I wondered.

I’ve had cancer long enough to know that the word “cancer” falling upon some ears fails to evoke much sympathy.  Some seem reluctant to speak with me, a cold awkwardness or an outright silence sits like a gulf between myself and the other.  But as I stared back at this woman behind the desk, I thought, “Surely, other women of my age with a diagnosis of cancer had entered this clinic. She must know what I am talking about.”

“Chemo will kill my eggs.” I said, “If I have chemo, I have to freeze them … I want to have children …” and then I stopped trying to explain myself.  I sensed then why the woman may have looking at me the way she was, why my presence in entering the clinic seemingly irked her as it so seemingly did.

“I’m single,” I said matter-of-factly, “I don’t have a partner.”

I felt judged for entering the fertility clinic without one. I had not expected that.

“You know, I wish I had someone with whom to share my life,” I thought, “someone to to help me through this difficult disease, someone to lie beside me at night in the moments I feel isolated, caught on the wrong side of the river, stationed on the bank of sickness when a rushing rapid of choice and uncertainty lies between myself and my health.”

The receptionist probably couldn’t hear my thoughts. She pushed a form towards me.  Peering over her reading glasses, she told me curtly to fill out the first section. “Since you don’t have a partner, leave the second section blank,” she said abruptly. Then she asked for my passport.

I sat down in one of the pleather chairs in the waiting room. The room was relatively empty save an affectionate couple to my left, the guy with his arm around his beaming girl, seemingly enamoured, devoted and delighted to have a child together.

Called in by the nurse, she pointed to the scale and I stepped on. She measured my height.  51 kg and 173 cm.

“Have you always been underweight?” She said.

“Not only am I cancerous and single,” I thought, “but I’m too skinny!”

Then small Indian doctor opened her door and sat me down next to her. In great detail explained to me the complex process of stimulating ovulation and storing my eggs as well as the urgency of doing this all before surgery and treatment began. She barraged me with statistics and figures of probable outcomes before saying: “Please keep in mind because you are single, you will have to self-fund this process.”

“Pardon me?” I responded.

“If you had a partner, the NHS would fund this, but because you’re single, you’ll have to pay for it.”

It’s difficult to have cancer, to face a life-threatening illness and see all plans I had for my life stand still in their tracks. I write this having already lost a breast to surgery, and with that loss have images of myself, of mothering, sexuality and femininity entered into a dusty tailspin.  Looking at my uneven chest, scared and bandaged, I fear losing my attractiveness to the opposite sex. I fear on some dark nights the cancer may have already spread, and that if I go through chemotherapy, that I’ll lose my hair and my fertility, or possibly despite my positive efforts, my life.

Even without cancer and its accompanying fears, it’s difficult to find myself in my mid-thirties single and still wanting children, to have entered and left relationship after relationship with those who seemed to be right, with those who seemed to have wanted the same things as I, then to experience disappointment when those same people decide they wanted something else. I see all this and experience all this and it is not easy. But why am I now, with cancer, being discriminated against having children at all, ever, simply because I am at this moment have not found someone with which to share a life and child?

The doctor pushed the consent forms across the desk.

“Do you want to start this process right away?” She said.

I looked at my hands, shyly folded in my lap. I wondered how I would manage the costs of all of it : the thousands and thousands of pounds on top of the hundreds of pounds my family and I have been putting down on alternative therapies, supplements, organic foods and all the etc. it takes to win the battle against cancer. I’ve cut down my working hours after leaving a stressful job all in an effort to ensure my long-term survival. But now, because I’m single, I’m being asked to pay what would be free if I were to have had a man beside me.

I took the forms, folded them, held them for a minute between my fingers, then inserted them in my handbag. “I’ll think about it,” I said.

The following Tuesday I entered the hospital again. My date was not with the short Indian fertility doctor this time but with the elderly radiologist followed by a meeting with my Chinese surgeon and English breast clinic nurse.  I had delayed surgery by two weeks having read about and spoken with women who had cured their cancer completely naturally without any conventional therapies. I had been doing reiki for three hours a day, had begun a new cancer-fighting diet, and was exploring new therapies.  I hadn’t had much time to work with any of these, but I figured an imaging scan would assure both me and my oncologist that whatever I had been doing I could keep doing. If the tumour hadn’t grown, or if as if by miracle it had shrunk, I knew I had more time to keep working on non-toxic and non-invasive natural therapies. With the right results from an ultrasound, I knew I’d have permission to delay surgery a little longer, and possibly save myself from losing a breast.

The images of an ultrasound were inconclusive. Hidden directly beneath my left nipple, the tumour remained a dark and mysterious crab-like beast, sticking its head in the sand just when we wanted to bring it to light.  But the surgeon and radiologist could agree on one thing. Since the last scan in early March, the tumour had grown about 6mm.  It certainly hadn’t shrunk, and it clearly hadn’t stayed the same.  They recommended an immediate mastectomy at the next available possibility.

Panicked, I signed.

Unfortunately that story, the one of the mastectomy itself my continuing recovery will have to be the subject of another post.I’m tired, and it’s well past my bedtime.  These days, I tire quickly. I still feel woozy from this morning’s acupuncture, and I’m carting around a bottle of bodily fluid attached by a tube to the fresh wound where my breast once was. For the first time in this journey of cancer, I feel sick.  In some ways, I feel relieved.  But today, I’m mourning the loss of this beautiful body part. I feel wounded, and I feel afraid. I fear becoming a burden. I fear I might not be able to have children. I feel lopsided and drained. My body and mind are sore and numb all at the same time.

Many of you have commented on my positive outlook.  I remain optimistic in this writing post along the journey of a disease. When a spontaneous smile comes, or a laugh that jolts me out of my physical discomfort, it can be powerful in irradiating energy throughout the body and can certainly “trick” the mind and trigger a chain of physical and emotional states that no doubt foster healing. In no way am I leaving out those moments.

When I’m genuinely happy, I smile. When I’m genuinely sad, genuinely mourning, genuinely frustrated, or genuinely angry, I’d prefer to feel what is passing through me and not gloss it over with the pretence of a smile.  I give myself permission to give some space for all the feelings on this journey until they genuinely pass. If I force myself to smile and think positively all the time, I risk pushing all those feelings down, down, down. That act may even create a new cancer in some other area of my body. The more I bury, the more I risk just give birth to a tumour filled with different encapsulated, crab-like feelings, cowering in the sand, reluctant to show its face to my immune system because the world – or my body – just wants to see a happy, happy face.

Anyway, I’m not alone in having feelings. In the fourteenth century, Rumi had them too.  So let me leave you with a poem called “The Guesthouse”. In honouring of letting what is, be.

Image

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,
Some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows
Who violently sweep your house
Empty of its furniture,
Still, treat each guest honourably.
He may be clearing you out
For some new delight.

The dark thought, the shame, the malice,
Meet them at the door laughing,
And invite them in.

Be grateful for whoever comes,
Because each has been sent
As a guide from beyond.

Where Am I?

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