January 2012: Taking Control Back

Flashback: May 10th, 2011:

I get an MRI .

Aside from the stage three breast tumors and five cancerous nodes in my right armpit, which are all easily removable by surgery, if you are a radiologist, you could see a possible stage four--or terminal--suspicious node under my collarbone and rib. Had one been the radiologist reading the scan one would have known that time was of the essence.

Physically, a doctor cannot get into the human body under the collar bone without breaking the collar bone and rib. Hence it is never removed, only shrunken by radiation.

Ah, you say, reading this, where does this collarbone suspicious node fit into the slow march towards death? Where does it fit in terms of staging? Stage four breast cancer means your cancer has metastasized distantly to one or more of the following four organs: bones, lungs, liver, and brain. So how does this possible "local metastasis" fit into the staging of cancer? Why is this local metastasis significant?

Answer: because lymph nodes are the vehicles upon which cancer cells travel to the four organs mentioned above.

Are you still with me?

Let's play "Guess when I was told about the collarbone node?"

Go on. Have a guess.

Waiting. . .

What's that you say? End of May, 2011?

Well...you are wrong.

I was told about the problematic collarbone node mid July, two whole months later. Standard practice for all in my situation. It occurred during my first meeting with my radiation oncologist, Dr. Caudreliere, the one who talked like Peter Sellers. He told me he saw the scan and read the report which included a comment by the radiologist on the "suspicious" collarbone node.

During that meeting he told me he was organizing another biopsy for me, NOT on the breast as by that time the cancerous breast had been lopped off. True to form, I was phoned, and attended a second biopsy: a biopsy of the suspicious collarbone node. August, 2011 I had it. And the guy doing it told me he could already tell it wasn't cancerous. Phew!

Off I go into the hands of the chemo oncologist till those sixteen weeks are over. The week following my last chemo, on November 12th, Christine took me to see Dr. Caudreliere again, the radiation oncologist.

During this meeting nought was said about the suspicious node, so I assumed all was good.

Wrong.

Last week, mid-January, 2012, when I finally was allowed to start radiation (though I had been told I could start it as early as December 2nd, if the staff was ready), I met with Dr. C. and he showed me the biopsy result, that the collarbone node was still suspicious for cancer.

Come on!! Come on!!! Are you kidding me? A biopsy confirms or denies cancer, it doesn't leave you somewhere in between! What the hell?

So am I alive or dead? Will I have stage four or terminal cancer soon or not? Am I still a permanent stage three?

Now top off this stunning piece of new information with the following astonishing thing I learned in November from both oncologists.

I asked both Dr. Wheatley-Price, and Dr. Caudreliere the following: "I have been reading online in my HER2 Breast Cancer support forum, a lot about the operations given to stage four, or terminal, women all over the world. The cancer spreading to the liver or lungs results in them having ablations on the liver or lungs, or a tiny piece of cancerous organ being lopped off with clean margins. Many of these women have been, like, ten years healthy since the spread of the cancer to either the lungs or the liver. Will you do that for me if the cancer metastasizes?"

Both doctors were emphatic that no, they would not. Although I asked them that question on separate occasions, both replied identically. "Breast cancer is too aggressive a cancer, esp yours, the HER2 kind, to bother lopping off the metastasis." (Ok, they used fancier words but the translation is correct.) "It will just spread to another place on the liver or lung, etc." "No point." What I realized is that they are on policy in this province to leave me in the ditch to die like a dog. Big contrast to the American women, but only the ones who have been paying into an expensive HMO policy. ($1600 per month if you are self employed.)

Side note: do not get me wrong. I am eternally grateful to free Canadian health care for cancer. We in Canada get this $130,000 initial cancer treatment for free, like the Brits, Swedes, Finns, etc. I am in awe, usually, of the incredibly wonderful gifts of care I have had, perfectly free to all citizens here. Astonished by the brilliant CCAC nurses who arrive at your house, for free, anytime day or night when you are sick from chemo, to inject your butt.

So I asked both oncologists this followup question: "is this policy to do no further treatment of stage four metastases due to cost-saving purposes?" Answer "NO! Simply the effectiveness is not there. You will be considered terminal and given palliative care till you die."

Okay. I had gotten used to the idea of dying. Since end of April last year I had been on an educational adventure, and I was forced to get used to the idea of being dead inside five years. And don't forget, the past year has been a big downer so death became a rather welcome idea at times. Our business, with me out of it, has been tanking a bit. Google will sink your business ad down to the point of nobody being able to find your business unless you throw money at them or a marketing person and we were hurting. My friend, Jill's mom, in Scotland had a tragic incident with a radiation error, and that was always on my mind when it comes to radiation.

In the January meeting with Dr. C. he had done some homework and provided me with the answer to the question I asked him mid-November when we met. "To what percentage (ballpark is ok) will my life expectancy improve if I have radiation atop the herceptin, surgery, and chemo I have already had?" Last week, mid January, 2012 he came prepared and said "ten percent". Well. Let me go home and think about the pros and cons of radiation (which I had bloody well thought he would have provided me mid November.) Back then he just said "well your chances will be better" but when pressed for numbers he had none.

The problem with him waiting this long to give me the exact statistic is that I had to do a lot of soul searching and balancing the negatives against the positives, inside a short time period. He had me down for treatment the same day he gave me the "ten percent" statistic so I did four radiations last week, each one a half hour.

Another new piece of information I was hit with last Monday was this one: "people who do all the treatment have up to an 85% chance of surviving, given your stage three cancer, HER2 status, etc." As I digested this incredible piece of information I realized that without radiation, 75% of women in the exact place I am right now survive. Three out of four survive and one in four will be dead inside the next 4.5 years. That stat is the exact inverse of how I stood on July 15th, when I met with Dr. Wheatley-Price, and he told me that with no further treatment, 3 out of 4 women in my situation are dead inside five years.

The last whompin' big piece of new info I had from Dr. Caudreliere, one week ago today, was that he had added seven new radiations, aimed exclusively at the collarbone node, to the 23 I was on deck for.

I experienced horrible depression, really really black depression during the week, last week, when I was undergoing radiation. It was partly the horrid weather, freezing temperatures, the radiation-induced fatigue, the fact radiation produces depression as a side effect, the Frontline episode I watched, on radiation caused by nuclear reactors that failed in Japan and elsewhere, such as Chernobyl, etc. The repetition of "radiation causes cancer" used in that Frontline episode, and the loss of several monthly clients to terrifying economic consequences for ourselves, and the fact Dave would not agree to invest in marketing our business. Once you get used to bad news, believe it or not, good news is not always good. Everything was out of my control. Others were rocking my world up and down and whenever they wanted, on the oncologist's schedule to provide or withhold information, regardless of my own schedule for requiring information.

Another bad thing happened to me in this neighbourhood, too. This coming Friday I go to court for it. What happened is this. I was backing out of our driveway to drive to the hospital. A car was parked on the other side of our narrow street. To get out, I had to gingerly maneuver the vehicle to avoid hitting it. I had to pull up close to its front bumper. There were sounds of construction in the air. A worker was working on a neighbour's house two houses away. One of the workmen was watching me maneuver around his coworker's car. He thought I hit the bumper. As I drew forward to pass him he started shouting angrily at me. It was clear he was a big guy in a temper who thought I had bumped his friend's bumper. I shot by him as I had just heard the story of the Ontario Attorney General who had rolled down his window when an angry courier thought he bumped him and the courier grabbed the steering wheel and a death resulted. I pulled by him and continued on. I had not hit the bumper.

When I arrived home a couple of hours later an angry police officer arrested me for "leaving the scene of an accident." I got out of the car in amazement. I knew no such accident had occurred but I knew the worker was pissed I had not stopped for him. I also knew what he had thought which I knew not to be true. I moved towards the so called injured car knowing full well it had not been touched and the policeman ordered me loudly "Don't touch that car!" My hands were already on the bumper, examining it for damage. It had none.

The cop was so mad he called for backup! The other policemen arrived and after sitting there doing nothing asked me "why are we here?" I didn't know, and my good friend next door even told the cop she had heard nothing in the way of a collision and was on the other side of a screen window as the weather was hot that autumn day. Dave arrived home after the dog park in the early afternoon and he, too, examined the car and said there was no mark on it. I took pictures and gave them to the Prosecutor when I went to see her. The whole thing was absurd. The cop was of a similar age and anger as the man who called him. It was clear they had bonded in the two hours I was gone. The "victim" came out and ran to his car, looking at me, saying "that's 800 bucks damage." Nothing on the car was damaged.

Sure enough no claim was filed against our insurance and I had the pictures to prove the car was unharmed. I went once to a court session where the judge put the date further down the calendar. This Friday, the 27th of January, I go at 1:30 to the court.

Cognitive dissonance, or depression and confusion while the brain is processing disparate, conflicting information, had set in. I was down in the well of depression again, due in no small part, to the yo-yo experience I was having by information coming at me that was both conflicting and late, late, late.

A week earlier, I'd received a phone call that my radiation had been delayed due to my "oddly shaped" chest, as Dr. C. called it on the phone message, etc. The last straw was that the girls on the desk failed to be able to make a simple change in scheduling for Friday for me, that I had presented them with four days earlier. The half hour radiations were set for all over the daily map: early, middle, late, with no two times the same. Thirty of them. My December 2nd start of radiation was already delayed till mid January. I balanced all this info against the fact that when I met, in November, one of the surgeons who was to do my reconstruction, he said four to six months had to pass after radiation before anybody would reconstruct my misshapen, deformed chest.

Everything was out of my control. I was a puppet thrown about by a two year old. Misshapen chest still there, hair inching its way out by millimeters. I was going to have to remain ugly for years, depending on people who never bother telling you what you should know, or who may or may not have been just fooling around all December, rather than getting the prep done to start me on radiation. Meanwhile I was reading about the burning skin, the radiation errors, the mistakes, the fatigue, the pneumonia, etc all possible effects of radiation.

This morning I called off the radiation. I am 75% alive. That is good enough for me. I don't know if you have ever experienced the kind of fatigue chemo gives, but I slept most of December. Just when I started feeling myself again, in January, down I went again with fatigue from the four radiations.

I'm tired of waking up tired. I want control back over my life so I can get up and start marketing my business again. I have started seeing Dr. Wilson, a wonderful woman psychiatrist in the oncology department at the Cancer Institute at the hospital. Canada has provided six sessions with an oncological psychiatrist for all cancer patients. Free. I have had two sessions with her and they are worth their weight in gold. She upped my anti-depressant dosage. Good. I hate this freezing weather.