My home care plans are shaping up much differently than I had originally imagined. These last couple of days, I’ve been getting the details on chemotherapy and I realize it might be more wise to stay in my apartment during this course of treatment. I’m being briefed the importance of what happens should I have a low white blood cell count during treatment. Anything higher than 38 degrees celsius body temperature means an infection and a rush trip to the Toronto General Hospital emergency room. My apartment is minutes away from TGH whereas Shirley and Yul’s place in Scarborough could take 45 minutes without traffic on the 401.
Which means I will have to endure a whole week alone with my Mom.
More on this later or maybe on a separate posting from this one… Maybe a posting when she arrives, my mad rush to tidy my apartment, an update on how we spend quality time and not my usual allotted “quantity time” (coined by Uncle Tom) I was happy to provide both parents, and all that goodness saved for a whole separate posting?!! It seems inevitable, doesn’t it?
I know. It’s been a while since I’ve blogged. As I mentioned on my previous “post” it was hot in Toronto! My favourite cafe, The Common, doesn’t use air conditioning in their fine establishment. Air conditioning is one of my biggest vices in the ways of trying to be eco-conscious which meant I was not going to blog at The Common either. So I was keeping my spirits high by splashing in private and public swimming pools, hanging out in malls, grocery stores, anywhere except my hot sticky apartment. Basically, I was enjoying my summer before having to meet with oncologists and dealing with more tests.
Carol and Angela came into town to hang out with me for a few days. It was great! We cooked, drank wine, chatted until late at night while staying at Carol’s cousin’s air-conditioned home. It was a lovely stay-cation for me. Carol and I have been friends since we were in university. I had called her up because I felt all sucky when I first found out I had breast cancer and I wanted someone fun and funny to visit me. She told me she would have to check her schedule and would call me the next day to let me know. I received a message the next day telling me she had just received an email from her friend Angela, in Vancouver, telling her she had to cancel her Winnipeg visit in June because it was conflicting with her final radiation treatment for her breast cancer. Weird coincidence, huh? Carol got me in contact with Angela, via facebook, the same day. Angela was probably the first person I corresponded with who had breast cancer. She would give me a synopsis of what it was like to have to deal with it, in the beginning, and then my diagnosis veered in a different direction from her story but the same emotions were still there and it was great to have a correspondence with her while I was/am coping.
Opportunity came last week when we were all free and I invited them to visit me here in Toronto during the peak heat wave. Quite frankly, I thought I would have been through chemo by the time they came to see me. I had visions of them holding my head up while I puked into the toilet seat. But LUCKY FOR ME I was able to eat, drink, swim, walk, shop, and stay up chatting with them while I was still able to this hot summer! It was bliss not to have to think about upcoming chemo stuff. A lot of worry and unanswered pathology reports was still weighing on my mind, but the distraction of good company and good wine helped ease this. A lot.
Carol came with me to meet my medical oncologist. Before we went to my appointment, I needed to get a full body bone scan done at Mount Sinai Hospital. An injection of some sort of radioactive substance (hopefully, low dose) was pumped into my arm, two hours prior to the scan, for my bones to “light up”. Some of these tests, however scary, are all kind of fascinating when you get to see the contraption at work. I laid on a narrow bed, the Nuclear Medicine tech strapped my feet and arms in place with velcro so they did not hang over the edges of the bed which began to move hydraulically forward to a camera hanging over my head. I was told to close my eyes as the camera was lowered to a couple of inches above my nose. The camera scanned across my body for the next 30 minutes as I laid still.
Well, I laid still enough. As the camera slowly moved away from my head and chest, I felt I was able to arch my head back, without moving the rest of me, to see what was going on, on the tech’s computer. My skeletal form was being outlined in a brownish red colour on the screen. I was fascinated. The camera inched across my waist and past the curved bones of my relaxed hands moving the narrow bed closer to the computer screen. I was able to arch my upper back, slowly tucking my shoulder blades inwards and using them to steady my balance, as taught in yoga classes, I was able to hang my head back far enough to see behind me. Yes, I was getting into a variation of fish pose to satisfy my curiosity. Wide-eyed, I could see all the bones in my body getting digitally darker and becoming clearer on the computer screen. The digital image corresponded exactly with the silhouette of how my arms turned into my torso, how my legs relaxed, curved bow-legged inwards at the bottom of my feet for my big toes to drop into one another slightly touching. It crossed my mind, the foundation that holds our bodies are so fragile when viewed this way.
I laid there the whole time wondering why no one ever exposed this mesmerizing machine to me earlier in life. How awesome a job this would be to scan bones! I guess it would get a little boring after a while, like any other job, but I’m sure it’s much more engrossing when you have to analyze the delicate structures, and… Hey! Where did the tech go?!! She said she would be in the room with me the whole time?!! Good god, she didn’t have to lie to me, I would have totally understood if she timed it and came back! Without wiggling, I arched my chest upwards to throw my head back a little further, I found the tech crouched down below the glass window, which separated her computer desk to the scanner, reading a book the whole 30 minutes I was being scanned. Bone scanning and reading novels. Surely, this was the best job. Ever.
Done with the scan Carol and I head over to Princess Margaret Hospital to meet with an oncology team. Joanne the intern/assistant walked into my examination room and went over my medical history and gave me some details of the missing pathology info before I was to meet with the oncologist. I wanted to know what receptor the cancer was, estrogen – positive, progesterone – low positive, her2 – negative. The tumour was 3.2 cm, grade 3 and I was told the oncologist would go over the finer details of this. She also asked about private health insurance, if I had any or if I was working. I said no to both questions but I had applied to The Trillium Drug Program but have not heard if I was approved yet for coverage. Joanne suggested I check with them again because chemotherapy is covered under OHIP but the anti-nausea pills, at $120 a dose (3 pills) each for 3 cycles, are not. Cancer is a rich man’s disease and rich I am not.
Joanne left the room to return with Dr. Amir, my medical oncologist who began with explaining my risk factors for recurrence. It was also his charismatic way to entice me into the world of chemotherapy or what he calls adjuvant treatment.
My age is still relatively young for breast cancer patients (the average age being about 51) which means there is a higher risk. The younger you are the farther you are away from menopause which means this cancer has the likelihood to recur as it feeds on estrogen, as mine does.
My tumour size was 3.2 centimetres which is a little larger than most (I think 5 cm and higher constitutes large tumours) and presents another small risk. Dr. A actually enlightened us, large tumours in young women with breast cancer is the norm because dense breasts usually masks the lump therefore going unnoticeable until they are larger than the pea sized lump we are taught to look for with self-breast exams.
Tumour grade was a 3, which marks high for an aggressive behaviour. Another small risk.
Lymph nodes – clear!
Lymphovascular invasion, which are the lines which connect the tumour to the lymph nodes. There were a few cancer cells present in those lines. Another small risk.
Receptors are, of course, “the proteins on cancer which tell it to grow in response to stimuli.” As Joanne had already explained previously mine were Estrogen receptor (ER) 100% and Progesterone receptor (PR) 5%.
I am given two chemo options; a short course and a long course and I find myself playing “would you rather” again. It gets a little overwhelming again because I don’t want those types of decisions anymore for this part of the game.
The short course chemotherapy involves 12 weeks of 4 treatments taken intravenously every 3 weeks. The side effects are: fatigue, hair loss, compromised immune system, aches and pains.
The long course of action is 3 treatments with one drug combination and another 3 treatments with a different combination. Side effects are the same as the short course with some bonus side effects of: nausea and vomiting, heart damage (1% rarely), and a second cancer (0.3%-0.5% very rarely). Scary, eh?
I am all for the short course when Dr. A explains he prefers the long course of chemo because it covers more cells. I wanted to tell him I just want this over with but I hear him out. He prefers the long course but if I really want the short course he would be happy with it, to flip a coin if I cannot make the decision. I asked him what would happen if I chose neither and just ended this now. He explains, as I understand it, it is all a gamble but I need to play the better odds. I would have a 50% chance of cancer recurring in 5 years if I did nothing. If I chose the adjuvant treatment my chances lowers to 10-15% of recurrence in 5 years.
Dr. A is giving me less than a week to make a decision. In the time between I still have a CT scan of my chest and stomach area to give him. I still have to meet with the radiation oncologist to see if I need radiation treatment. However, Dr. A as already booked my first three chemo daycare appointments as if I have already chosen to do the long course.
In any case, my first day of chemo starts on Tuesday, August 9, 2011. My mother is showing up on Sunday prior to my appointment. I am hoping my daybed is comfortable enough for her one week stay. I had my hair cut today. I hate the way it looks but rationalized it was going to fall out in a couple of weeks anyhow. For now the haircut will do.