As I lay under my comfy duvet and hand made batik quilt in what I call my "chemo nest," I am contemplating whether I will get out even for a short walk today.
I had chemo #2 late yesterday afternoon and though I had tried hard not to anticipate another rough night, my best description is that it was weird. But before talking about chemotherapy I want to describe the events following the "waiting and mind games."
Sept. 3 I flew home from Turkey with our neighbours Cathy and Doug who had been sailing with us and who spent two days with me in Istanbul before our flights. Istanbul is probably my favourite city after Vancouver and I always feel at home there, especially when staying at the Empress Zoe Hotel, owned by an expat American named Ann. We first stayed there in 1996 and I have rarely missed a year since. They treat me like family with many hugs and kisses and it is a haven in the middle of the Old City, so within walking distance of most of the ancient sites. Cathy had her first Turkish bath with me in the cavernous Cemberlitas Baths, built in the 15th century. It is now touristy but nevertheless invokes what community bathing would have been like way back then. Cathy noticed a woman with two lovely young daughters bathing together. The mom had had bilateral mastectomies with no reconstruction yet was totally comfortable naked with her girls. How positive is that?
We spent time with an old friend in the Arasta Bazaar, Hasan. Hasan's wife Sariye had given him two scarves for me, knowing about my upcoming surgery. I honestly did not know that I would lose my hair, still thinking that I was going to have a lumpectomy and radiation, but I was so touched by her kind gesture, especially since she had done the hand embroidery on one of the scarves herself for her dowry 25 years before! She could not have been older than 9 or 10 then but the work is exquisite. The other beautiful scarf came from her sister-in-law. Hasan and Sariye tried for many years to have babies and now have 2 delightful young daughters. I am a quilter and for each baby, Sinem and Savaal, I made a quilt. Western quilt making is not common in Turkey and hand embroidering scarves is not common here, so our sharing has been special.
I came home to Vancouver with 3 days to go before surgery. Cathy and I were both jet lagged but not enough to put off visiting a farmers' market the next day. I had hoped that pickling cukes would be out of stock so I would have an excuse not to make dill pickles, but sadly they were available. Wednesday, 20 quarts of dill pickles later, I did some yoga and a walk. Another old friend John calls me the "energizer bunny" and though I am not sure this is a compliment, I do tend to do a lot. But dill pickles are a family favourite and for me this is important too.
Since my husband Dick was still in Bodrum putting our catamaran away for the winter, I had asked my friend Liz to accompany me Friday. We met Liz and Doug nearly 28 years ago at prenatal classes. We were by several years, the oldest couples but the other younger couples seemed so serious that they led us to gravitate to Liz and Doug. I think that in group situations there are often reasons people do gravitate to one another but for us this meeting is still considered a bonus. Today is their daughter Katie's 27th birthday (yes, Halloween) and Nov. 16 is our daughter Mary's birthday. In 2010, several of us celebrated Katie's birthday part way through the Annapurna Base Camp trek, so clearly our families go back a long way. Some day I will digress further about how blessed I am with such amazing friends!
So Liz picked me up in the dark Sept. 7 to head to St. Paul's Hospital for a radioactive dye injection right beside my right nipple. I had read about horror stories and even called the nuclear med dept. earlier in the week. The technician was amazing and no pain beyond a tiny prick and I could not help bt say "no pain, no gain." She quickly came back with, "I can do it again." We started our journey that day with a good laugh. Then it was off across Vancouver to Mt. St. Joseph Hospital, chronicled in an earlier post. We crossed the Cambie St. Bridge as the sun came up on a beautiful Vancouver, surely a harbinger for a successful surgery.
My breast surgeon came to my pre op stretcher with a kind of geiger counter device to trace the radioactivity, making sure that the dye had done its job. Once in the OR, the usual process started. Back a zillion years ago when I was a nurse, I had taken an OR nursing course so it was old hat. The first nurse to greet me made the mistake of calling me "dear." Why do some medical staff do that? I said clearly, "no dears please," and said no more. I wonder if they discussed "dear" once I was anesthetized!
Recovery I remember well, even coming in and out of consciousness. I was bouncing off the stretcher with shivers and the nurse hooked up a machine which blew heat into the bedding. Nice! But I clearly was not breathing deeply enough and that nice nurse became an irritation as she kept waking me up telling me to "blow out candles." A woman next to me got into even more trouble and her nurse actually shouted at her. I did my candle blowing, interspersed with deep sleep and then got to move back to the first room for discharge. Liz arrived and we waited for the surgeon. Briefly she gave us what news she had; a second lump 1cm from the first and several "pearly" looking nodes. Not good news. But we would have to wait for pathology, which in BC can mean waiting a long time. Each patient has an assigned patholgist and if he/she is sick, goes away, whatever, the pathological examinations wait. My follow up appt. with her was Sept. 24 and she hoped the report would be there by then.
Liz took me home and Katie, now a nurse, came and checked on me later.
Wednesday, October 31, 2012
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.
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.
Wednesday, October 24, 2012
My first blog. My first blog entry.
Starting this particular writing process has been on my mind for a while. When I was diagnosed with breast cancer in July I thought, oh, a little lumpectomy and a few nodes taken out, some radiation and I'll be good to go by Christmas. Maybe even trekking by spring. Ha! So I did not think other than keeping a simple journal that I would want to write about my cancer. But when the surgical pathology results came back, life took a different turn for me and instead of radiation, I have now embarked on what will probably add another year to the three months already taken up with diagnosis, waiting for surgery, surgery and now starting chemo.
Chemo is only one step but it is an important one that we hope will stop or at least slow the "constellations of cancer" that my breast surgeon calls the findings. For the past several nights I have dreamed about how to start the blog and how to write about it. Clearly I want to get started or so the dreams say. Mary has set me up with the basic tools here and she even came up with the name, "Breast Cancer, eh?" Very Canadian and right now I am so glad I am a Canadian and that I am here in Vancouver, BC with the best cancer outcomes in Canada. This is not to say that the rest of Canada is not as good (see, I am worrying about what people might think which I will need to just get over) but when our good Nova Scotia friend who is head oncologist in Cape Breton says it, well it does make me feel good!
The second choice for the blog name was mine: "Cancer--What the fuck!" but we decided the first is better. WTF will appear anyway as there have been so many WTF moments since July 18 and no doubt there will be many more.
Yesterday my good friend and neighbour (and fellow trekker) Cathy sent me this pink glove dance contest.
Mount St. Joseph Hospital is where I was diagnosed. This has already meant several visits there for mammograms, ultrasound, lots of tests, visits to my breast surgeon before and after surgery, my surgery and then a CT scan most recently. When I saw the entire staff doing the dance it was overwhelmingly emotional for me - tears just fell out of my eyes and even now they threaten. They all care! I worked at MSJH and it was a small, caring hospital then just as it is now.
Stay tuned for the next entry.
Chemo is only one step but it is an important one that we hope will stop or at least slow the "constellations of cancer" that my breast surgeon calls the findings. For the past several nights I have dreamed about how to start the blog and how to write about it. Clearly I want to get started or so the dreams say. Mary has set me up with the basic tools here and she even came up with the name, "Breast Cancer, eh?" Very Canadian and right now I am so glad I am a Canadian and that I am here in Vancouver, BC with the best cancer outcomes in Canada. This is not to say that the rest of Canada is not as good (see, I am worrying about what people might think which I will need to just get over) but when our good Nova Scotia friend who is head oncologist in Cape Breton says it, well it does make me feel good!
The second choice for the blog name was mine: "Cancer--What the fuck!" but we decided the first is better. WTF will appear anyway as there have been so many WTF moments since July 18 and no doubt there will be many more.
Yesterday my good friend and neighbour (and fellow trekker) Cathy sent me this pink glove dance contest.
Mount St. Joseph Hospital is where I was diagnosed. This has already meant several visits there for mammograms, ultrasound, lots of tests, visits to my breast surgeon before and after surgery, my surgery and then a CT scan most recently. When I saw the entire staff doing the dance it was overwhelmingly emotional for me - tears just fell out of my eyes and even now they threaten. They all care! I worked at MSJH and it was a small, caring hospital then just as it is now.
Stay tuned for the next entry.
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