Thursday, October 25, 2012

Waiting games and mind games

Early on the morning of July 18 one of my hiking buddies called and woke me up. Normally I would not have been thrilled to get a call so early as I had not been sleeping well. However after I hung up on this cool, grey day in July (could have been March) I put my cold left hand into my right armpit to warm it up. I really woke up when I felt a lump significant enough to alarm me. I checked the other side to make sure it was not jut a part of my normal physiology. No. I got up and did the same check standing, then in front of a mirror. I was horrified. After calling our flaky GP to establish that yes, she had gone north for the whole summer yet again and would not be back for several weeks I headed for our nearest drop-in clinic. As luck would have it, the drop-in doctor that day was someone I recognized from my nursing past. Apologizing for her cold hands which meant nothing to me in my terrified state, she examined me and confirmed that yes, there was a lump. There were choices, but to this day, I know she made the right choice in sending an urgent referral for me to the Rapid Breast Assessment Center at Mt. St. Joseph Hospital. I walked out of the clinic into the still early, grey day with my head down, near tears, saying "what the fuck" to myself. I knew I had breast cancer. No matter that 80% of lumps turn out to be benign. No matter that my screening mammogram done 7 months prior said "normal, come back in 2 years." Saying to myself that having a negative attitude was ridiculous and I should think positively did not matter. I knew.

Thus began what I call the "waiting game" which I have been playing for over 3 months, though now that I am in the midst of chemo, it is a bit of a different waiting game. The first wait of 5 days for the initial appointment at MSJH for a diagnostic mammogram and ultrasound was unsettling. I did tell a few people including of course my husband Dick who was on our catamaran in Turkey. That weekend, my beautiful daughter Mary invited me to a lantern festival at an east side park a walk away from her place, and then took me out to a wonderful little Ethiopian restaurant for dinner. It was a such a pleasant respite from the breast cancer voices in my head and though we did talk about the possibilities of what could lie ahead, she took me out of my dark head space for a few hours.

Monday morning, the first person I met in the clinic was the receptionist who asked me how I was. The way she said it was not your usual, "How are you?" She seemed to be asking, "Really, how are you coping?" So the week went: mammogram, ultrasound, see a doctor on Wed., no, cancel that, come in for a core biopsy on Wed. instead. The warm and caring interventional radiologist who did the core biopsy knew, as all of the staff in the hospital seemed to know, that I was supposed to be going to Turkey for several weeks very soon. Normally, core biopsy results could take 5-7 business days. He said he would try for Monday. He did better than that as I got a call to come to the hospital Friday morning.

It was another cold, grey July day and again, I knew. I went halfway through a red light on Main street, then stopped and thought if a police officer came along, I would ask him to come with me for my results. No tears, just very afraid and not sure how to handle what was to come. Almost not breathing. The clinic doctor basically said, invasive ductal cell carcinoma, you have an appointment with a breast surgeon late Monday afternoon and yes we all know you are supposed to go to Turkey on Wednesday.

As luck would have it, old friends from Edmonton arrived on the weekend and so Barbara came with me as chief note taker. We both liked the surgeon and trusted her judgment. It helped that she came with great references - if nothing else I seem to have good connections and over the weekend I heard reassuring things about Dr. Dingee, including from her husband. It turns out that Dick knows her husband well from our blue water sailing association. It was decided (as a team) that I would need to have a lumpectomy and sentinel node biopsy. But back to that waiting game: no OR time or surgeons available until Sept. 7, almost 6 weeks away. Barb asked her what the surgeon would do if it were her. She contemplated the question and said she thought she would be comfortable waiting. Good enough for me and Turkey was back in the cards. And considering the fact that the pathology results showed a lump <2cm and indicated that there was no lymphatic or vascular invasion, it seemed reasonable to wait. I could have used our expensive Aramco health insurance by heading to MD Anderson in Houston, one of the top US cancer centres and Dr. Dingee certainly encouraged that choice if I felt I wanted to try to have surgery sooner. She even contacted all her colleagues but the issue of "summer closures" with no OR time or surgeons on holiday was the same. When I went to the MD Anderson site and saw the protocol involved I knew I would gain little or no time. So the next waiting game began but a new game started up too.

The mind game. I have discovered that many of us with breast cancer play this game. For me at first, that meant trying to figure out why I got breast cancer. Apparently my kind of BC grows over many years so how could this happen to me when I felt I was the healthiest and fittest I had ever been? I have spent the past several years training for and trekking in Nepal, often twice a year. I joined a hiking club here, our diets are healthy, I have been going to yoga several times a week for 6 years. Too much alcohol? Was it living near an air base in Saudi Arabia during the Gulf War? Was it the fertility drugs I took so that I could get pregnant? Then was it because I was so old when I had my kids? Should I have figured out a way to have my surgery faster? Was my lump growing? Fortunately most of us do discover that mind games are really no fun and once we have read and researched the whys and wherefores of breast cancer, hung out online and talked to other survivors, we tend to quit, or at least slow the playing, knowing that there is no winning. "Dr. Susan Love's Breast Book" recommended by my good friend Anne who is a breast cancer survivor almost five years out helped too. But I did play the mind game for awhile albeit in idyllic conditions sailing on our catamaran in Turkey. Looking back, it was good place to play the game and then let it go. Once we had friends and family aboard, we actually played fun games--"Settlers of Catan," backgammon and crib.

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