While I waited for surgery this past summer, I thought about the possibility of chemotherapy and quite honestly feared it. More than anything at that time, I hoped that radiation would be the worst I would have to do after my lumpectomy. Well, as we all know it did not turn out that way. Just like a lot of things that were distressing from the moment I found my lump, I got over it.
In "Dr. Susan Love's Breast Book" she says "Chemotherapy has had a lot of bad press, and it's a pity because it's one of the most powerful weapons against cancer that we have." When I look at 10 year survival and recurrence rates given my aggressive and fast growing cancer, I am thankful for the drugs that will significantly decrease those numbers. Anti nausea and steroids now control far better the side effects and I am lucky that they have been minimal. Studies maintain exercise and yoga help too; again lucky for me!
I am not saying that I am enjoying it but it is not forever. My taste buds have just about disappeared and a lot of foods taste like cardboard or metal and that includes wine. I am not sure if that is one of those silver linings as I figure it is not bad to take a hiatus from alcohol. I am still hoping that I can find a bottle or two of wine that I can enjoy at Christmas! That said, one of the ways I describe how I feel on chemo is that it seems as though I have a mild hangover. You know when you think food or carbonated drinks or more sleep will cure the hangover? Well for me, it is always vaguely there.
One more side effect; the nasty chemo drugs cause hair to fall out so I am now bald. Mary made a fun family video of hair buzzing night and that has already been uploaded. Mary and I went wig shopping last week and I will be soon be a blond for the first time in decades when it arrives next week. Why not! To be honest baldness has not bothered me much and I am happy with my caps and scarves, especially those special Turkish ones.
I am reading a lot and have my "light" books like murder mysteries and Tina Fey's "Bossypants" which I just finished but I am also reading some "heavier" books too. "The Emperor of all Maladies, a Biography of Cancer" has been a welcome gift and though I am only part way through it, I am fascinated by the history behind cancer surgery, radiation and the discovery of what we now call chemotherapy. The author Siddhartha Mukherjee quotes Susan Sontag, from her book "Illness as a Metaphor."
"Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
And so it is that I am a citizen of that other place right now.
Thursday, November 29, 2012
Sunday, November 18, 2012
Silver Linings and Never Ending Support!
One week ago I posted Himalaya and Challenges. The next evening we went to see Leonard Cohen. I first heard his music in 1968 but had never seen him live in concert. When we bought tickets in September I had no idea that chemo would be in my life by the time he came to town. Yet the concert turned out to be on day 14 of my third cycle of chemo. One day later and I would never have been able to attend. But it must have been meant to be and no matter how many people say all his concerts have been amazing, for me I know this was his best! He is 78 years old and sang for almost 3 and a half hours along with what must be some of the most talented musicians and singers from around the world. His boundless energy propelled me full of life into my next cycle of chemo and even the days following.
Was that concert a silver lining? For me, yes it was. Normally I am leading treks and tours at this time of year; this year I got breast cancer but got to see Leonard Cohen and company!
There have been many silver linings that have given me strength and they do not stop. Of course I knew that I had good friends and a wonderful family but I honestly did not know that I would be blessed by overwhelming support and love in such amazing ways.
From the beginning I had friends who had already "been there, done that" with their breast cancer and they were there for me. Other friends listened to me rant and rave and did not judge me. My husband Dick who was in Turkey on "Van Kedisi" all through the difficult waiting for diagnosis time, talked to me on Skype daily and only when BC was confirmed did he say "FUCK!" Normally when anything remotely dire is going on, he says it immediately and often! Well, he got it right that day - "What the fuck" indeed!
Razzu in Kathmandu had Rinpoche do a "Puja" for me at Bodhinath within days of my diagnosis. I know the monastery well as I have been there with Razzu many times (and some of you my friends have also been there) so I was able to so much appreciate this ceremony, feeling as though I was there. Rinpoche told Razzu after the puja, that I am going to be OK, this in Tibetan. Good thing Razzu really does speak Tibetan - would not want to get that translation wrong!
Friends from elementary school days have brought immense support in different ways. Mary, my oldest friend, has brought me the gift of her decades of learning - special tinctures for healing and cancer and teas specific to my needs with all ingredients grown in her own island garden. Susan, whose husband Dennis died from leukaemia 35 years ago this month has chosen to jump on to the breast cancer bandwagon with me and I think she already knows more about it than anyone who has not had BC! She was Dennis's caregiver as they faced his cancer together and understands well what my family has been introduced to.
My "nurse" and fellow trekker Luba comes every other day to do my Neupogen injection which I am perfectly capable of doing myself but she does it better.
Friends pick me up for yoga, bring me soup, call me to go for walks and almost always say yes if I ask them if they will walk with me, play Settlers of Catan on MY schedule, send me funny jokes and beautiful photos, make me laugh and it just keeps happening! Blessings and prayers come from friends and family from all over the world and no matter about religion or spirituality, what comes across is the incredible caring.
My sisters call, send me poetry and care so much. One sister in law in NZ has sent me special berries to help things taste better (chemo does a number on the taste buds) and the other Skypes on a regular basis so I get to see her smiling face as well as talk.
And then there is Dick and our wonderful kids. Mary teaches me to write, Steven publicly "loves" me on Facebook and Andy has always championed my trekking efforts. Dick is from NZ, Mary and I were born in Grace Hospital in Vancouver, Steven in Singapore and Andy in Saudi Arabia. We have Dick to thank for providing us the opportunity to live and travel abroad. It was not always easy but I suspect it has given us a unique opportunity as a family.
It is exactly four months today that I found the lump. I know that there will be many more months of treatment before I can say I have done all I can but thanks to all of you, the battle is shared.
Was that concert a silver lining? For me, yes it was. Normally I am leading treks and tours at this time of year; this year I got breast cancer but got to see Leonard Cohen and company!
There have been many silver linings that have given me strength and they do not stop. Of course I knew that I had good friends and a wonderful family but I honestly did not know that I would be blessed by overwhelming support and love in such amazing ways.
From the beginning I had friends who had already "been there, done that" with their breast cancer and they were there for me. Other friends listened to me rant and rave and did not judge me. My husband Dick who was in Turkey on "Van Kedisi" all through the difficult waiting for diagnosis time, talked to me on Skype daily and only when BC was confirmed did he say "FUCK!" Normally when anything remotely dire is going on, he says it immediately and often! Well, he got it right that day - "What the fuck" indeed!
Razzu in Kathmandu had Rinpoche do a "Puja" for me at Bodhinath within days of my diagnosis. I know the monastery well as I have been there with Razzu many times (and some of you my friends have also been there) so I was able to so much appreciate this ceremony, feeling as though I was there. Rinpoche told Razzu after the puja, that I am going to be OK, this in Tibetan. Good thing Razzu really does speak Tibetan - would not want to get that translation wrong!
Friends from elementary school days have brought immense support in different ways. Mary, my oldest friend, has brought me the gift of her decades of learning - special tinctures for healing and cancer and teas specific to my needs with all ingredients grown in her own island garden. Susan, whose husband Dennis died from leukaemia 35 years ago this month has chosen to jump on to the breast cancer bandwagon with me and I think she already knows more about it than anyone who has not had BC! She was Dennis's caregiver as they faced his cancer together and understands well what my family has been introduced to.
My "nurse" and fellow trekker Luba comes every other day to do my Neupogen injection which I am perfectly capable of doing myself but she does it better.
Friends pick me up for yoga, bring me soup, call me to go for walks and almost always say yes if I ask them if they will walk with me, play Settlers of Catan on MY schedule, send me funny jokes and beautiful photos, make me laugh and it just keeps happening! Blessings and prayers come from friends and family from all over the world and no matter about religion or spirituality, what comes across is the incredible caring.
And then there is Dick and our wonderful kids. Mary teaches me to write, Steven publicly "loves" me on Facebook and Andy has always championed my trekking efforts. Dick is from NZ, Mary and I were born in Grace Hospital in Vancouver, Steven in Singapore and Andy in Saudi Arabia. We have Dick to thank for providing us the opportunity to live and travel abroad. It was not always easy but I suspect it has given us a unique opportunity as a family.
It is exactly four months today that I found the lump. I know that there will be many more months of treatment before I can say I have done all I can but thanks to all of you, the battle is shared.
Sunday, November 11, 2012
The Himalaya and Challenges
When I led a tour for 30 family members and friends to Nepal from Dhahran, Saudi Arabia in January, 2004 I never expected it to be the beginning of a long relationship with a man named Razzu Tuladhar and his family. Nor did I expect to find myself returning to the Himalaya over and over, often twice a year and in 2005, three times. It certainly never occurred to me back then, that in my late fifties, I would become a trekker. But during that first tour to Nepal which led us to Kathmandu, Pokhara and Chitwan, our eyes were opened not only to the beauty of the Himalaya and the limitless vistas of this mountain kingdom, but also to the amazing fortitude of its people, a nation of mainly Hindus and Buddhists. Razzu was in charge of our expatriate group, all of us coming from the "haves" of this world and he did his best to show us in the short time we had in Nepal, that there are many ways of seeing even the simplest of things. He opened our eyes just a little.
In November of 2004 I was back with yet another group from Dhahran and thus began my love affair with the countries of the Himalaya; Nepal, Bhutan, Tibet and Sikkim (once a kingdom, now a state in India). Though in the beginning I led just tours, my husband yearned to trek and I became an unwilling participant. I had never been particularly athletic, and though not a couch potato, the idea of trekking up hill and down hill at high altitude kept me awake some nights. Yet in March of 2007, a group of 14 of us embarked on the Annapurna Base Camp trek. We were two families (both with our 3 kids each) and a few friends. Though we were actually unable to make it to base camp that spring due to late snowfall that had helicopters evacuating trekkers from high up, we still managed to complete a different circuit. To my everlasting surprise I became an addicted trekker and since then have led (I use "led" loosely as once my groups arrive in Nepal, Razzu and his team take over) treks to Everest Base Camp, Annapurna Base Camp, the Helambu and most recently, in May of this year to Upper Mustang near the Tibet border. I did find that first trek to be the hardest thing I have ever done and do consider each trek, no matter its level of difficulty, to be no easy feat. In part it is the challenge every time, not to mention the learning opportunities afforded, that keep me going.
Challenges. I think deep down that I have always enjoyed challenges. The trek to Upper Mustang in May was a real challenge. We flew from Pokhara to Jomsom to start our trek at 2720 meters and much of the trek has us climbing at altitudes of 3700 to over 4000 meters. For article/photo gallery of our Mustang trek: http://www.aramcoexpats.com/articles/2012/07/aramco-reunion-in-nepal-himalaya-trekking-to-upper-mustang/?utm_source=2012_07_+10_Newsletter&utm_campaign=May+15+2012+Newsletter&utm_medium=email
So from the challenge of the high altitude trek to Mustang in May, the next challenge turned out to be breast cancer. Although I did not intentionally train for this one, it turns out that the six years I have devoted to training for hikes and treks have possibly been the best preparation one could have. Over these years, I lost weight in a healthy way, ate more of a plant based diet than ever before, and embraced yoga. In retrospect, I feel that I started this battle in July in excellent shape, both physically and in part mentally.
It is impossible to spend time in the Himalayan countries and not come away with a different perspective on spirituality. Though I have taken only baby steps, both yoga, meditation and mindfulness entered my life around the same time I started my physical preparation.
I do consider the diagnosis and treatment for my breast cancer to be the biggest challenge of my life. I do plan to meet the challenge and will be trekking in Nepal in 2014. There is already a plan afoot with family and friends to do the Annapurna Base Camp trek in the spring of 2014. Even people who really had no desire to do this, have decided that life may be short and why not take a chance and do something out of their comfort zone. We had to cancel the ABC fall, 2012 trek but this will also take its place. I look forward to seeing the rhododendron forests of the Annapurnas in full bloom again; so many gifts ahead!
In November of 2004 I was back with yet another group from Dhahran and thus began my love affair with the countries of the Himalaya; Nepal, Bhutan, Tibet and Sikkim (once a kingdom, now a state in India). Though in the beginning I led just tours, my husband yearned to trek and I became an unwilling participant. I had never been particularly athletic, and though not a couch potato, the idea of trekking up hill and down hill at high altitude kept me awake some nights. Yet in March of 2007, a group of 14 of us embarked on the Annapurna Base Camp trek. We were two families (both with our 3 kids each) and a few friends. Though we were actually unable to make it to base camp that spring due to late snowfall that had helicopters evacuating trekkers from high up, we still managed to complete a different circuit. To my everlasting surprise I became an addicted trekker and since then have led (I use "led" loosely as once my groups arrive in Nepal, Razzu and his team take over) treks to Everest Base Camp, Annapurna Base Camp, the Helambu and most recently, in May of this year to Upper Mustang near the Tibet border. I did find that first trek to be the hardest thing I have ever done and do consider each trek, no matter its level of difficulty, to be no easy feat. In part it is the challenge every time, not to mention the learning opportunities afforded, that keep me going.
Challenges. I think deep down that I have always enjoyed challenges. The trek to Upper Mustang in May was a real challenge. We flew from Pokhara to Jomsom to start our trek at 2720 meters and much of the trek has us climbing at altitudes of 3700 to over 4000 meters. For article/photo gallery of our Mustang trek: http://www.aramcoexpats.com/articles/2012/07/aramco-reunion-in-nepal-himalaya-trekking-to-upper-mustang/?utm_source=2012_07_+10_Newsletter&utm_campaign=May+15+2012+Newsletter&utm_medium=email
So from the challenge of the high altitude trek to Mustang in May, the next challenge turned out to be breast cancer. Although I did not intentionally train for this one, it turns out that the six years I have devoted to training for hikes and treks have possibly been the best preparation one could have. Over these years, I lost weight in a healthy way, ate more of a plant based diet than ever before, and embraced yoga. In retrospect, I feel that I started this battle in July in excellent shape, both physically and in part mentally.
It is impossible to spend time in the Himalayan countries and not come away with a different perspective on spirituality. Though I have taken only baby steps, both yoga, meditation and mindfulness entered my life around the same time I started my physical preparation.
I do consider the diagnosis and treatment for my breast cancer to be the biggest challenge of my life. I do plan to meet the challenge and will be trekking in Nepal in 2014. There is already a plan afoot with family and friends to do the Annapurna Base Camp trek in the spring of 2014. Even people who really had no desire to do this, have decided that life may be short and why not take a chance and do something out of their comfort zone. We had to cancel the ABC fall, 2012 trek but this will also take its place. I look forward to seeing the rhododendron forests of the Annapurnas in full bloom again; so many gifts ahead!
Tuesday, November 6, 2012
Pathology, the Constellation and WTF!
September was a beautiful month. Dick flew home from Turkey a few days after my surgery and we embarked on the next part of the breast cancer journey together. My recovery from the lumpectomy and sentinel node biopsy went well though I worried about the numbness near the incisions and especially in my armpit. However, I was back walking with in a few days and started range of motion exercises too, in hopes of warding off lymphedema which is a swelling of the arm and sometimes even the breast following the removal of lymph nodes. I credit my yoga practice and degree of fitness to the rapid recovery. I saw my awesome physiotherapist Paolo, a week after surgery and his calm words of reassurance were welcome. He carefully checked all the muscles and nerves affected by my surgery and was genuinely pleased. He told me he would manage my physiotherapy needs and refer me to a specialist lymphedema P/T if needed. Paolo has kept me trekking for the past few years and I trust he will do so again once we battle this beast. Gotta say too that we talked chickens as he and his family have had them for years. He invited us to visit and see their chicken coop (Dick had already drafted our coop) the next day. Fun - we got to meet his wife and two wild little boys and the new baby I had brought knitted animal hats and tiny felt slippers for from Nepal in May.
The first 10 days post op flew by and with our great Indian summer weather, I "supervised" Dick in the yard, helping where I could and waited patiently for my pathology results. Since I had been told it would be a minimum of 7-10 business days, I thought I handled the wait reasonably well until about day 8. It was as though a weight settled over me those last few days and by the Friday before my my Sept. 21 appointment with the breast surgeon, I was beside myself. I was totally irrational and I was barely breathing again and felt paralyzed with crazy thoughts. It did not help that when I called MSJH late Friday, results had not arrived, yet the appointment with my breast surgeon was at 0800 Monday.
0800 Monday, Sept. 24. Funny how so many dates since July 18 are imbedded in my brain. Somehow I don't think "chemo-brain" are going to erase them either. The results had arrived late Friday. First a quick examination by Dr. Dingee. She was pleased with my range of motion, activity level and advised 3M paper tape for a possible "seroma," yet another BC term I knew nothing about. Then she cut right to the chase - handed me a multi page copy of my pathology results. She called the findings a "constellation of cancer." As she described the constellation, it hit home that nothing from my July core biopsy pathology was even remotely the same. Breast cancer, it seems, is rarely simple and in my case seems to have morphed from a simple lump to a fucking constellation! Even though I had known that during surgery, my surgeon had found a couple of "pearly" looking nodes and a second lump, I had thought that a maximum of 4 nodes would have been taken as that is the norm for Sentinel Node Biopsy. Not so. Another WTF moment.
So here is the constellation:
The first 10 days post op flew by and with our great Indian summer weather, I "supervised" Dick in the yard, helping where I could and waited patiently for my pathology results. Since I had been told it would be a minimum of 7-10 business days, I thought I handled the wait reasonably well until about day 8. It was as though a weight settled over me those last few days and by the Friday before my my Sept. 21 appointment with the breast surgeon, I was beside myself. I was totally irrational and I was barely breathing again and felt paralyzed with crazy thoughts. It did not help that when I called MSJH late Friday, results had not arrived, yet the appointment with my breast surgeon was at 0800 Monday.
0800 Monday, Sept. 24. Funny how so many dates since July 18 are imbedded in my brain. Somehow I don't think "chemo-brain" are going to erase them either. The results had arrived late Friday. First a quick examination by Dr. Dingee. She was pleased with my range of motion, activity level and advised 3M paper tape for a possible "seroma," yet another BC term I knew nothing about. Then she cut right to the chase - handed me a multi page copy of my pathology results. She called the findings a "constellation of cancer." As she described the constellation, it hit home that nothing from my July core biopsy pathology was even remotely the same. Breast cancer, it seems, is rarely simple and in my case seems to have morphed from a simple lump to a fucking constellation! Even though I had known that during surgery, my surgeon had found a couple of "pearly" looking nodes and a second lump, I had thought that a maximum of 4 nodes would have been taken as that is the norm for Sentinel Node Biopsy. Not so. Another WTF moment.
So here is the constellation:
- 6 of 8 lymph nodes positive for metastatic spread
- Extranodal extension is present - (had to look that one up!)
- Invasive carcinoma near or on the surgical margins
- Carcinoma (main lump) measure 3-3.5 cm (used to be <2 cm)
- Second lump is described as a 7 mm lymph node replaced by metastastic carcinoma
- Extensive lymphovascular invasion
For the first time since July 18 when I found my own lump, tears trickled out of my eyes. Short lived as I knew I needed to concentrate. Dick took notes, I tried to understand what all this meant. Referral to a medical oncologist and a bone scan and CT scan were ordered and all to be done on a "rush" basis.
I went to a yoga class the next morning. During Shavasana, usually one of my favourite parts at the end of the class, I found that tears were literally pouring out of my eyes. I bolted outside into the sunshine and sat there in disbelief, while the tears continued. But I guess that it was finally hitting home - I really do have an aggressive, fast growing cancer.
More radioactive dye was injected into my veins for the two tests. Technicians can no longer use my right arm for accessing veins due to the possibility of lymphedema. One silver lining occurred to me later - I did not know that 8 lymph nodes had been taken or I might have been gentler with my exercise regime - yay, full range of motion even with 5 axillary nodes and 3 sentinel nodes missing! I digress, left arm black and blue and the techs can't use wrist or hand veins as dye is so toxic it can cause nerve damage. But veins are found, 3 pokes for each and an ER nurse rounded up for the CT scan poke. He is amazed at how difficult it is to find a vein.
We meet the medical oncologist (MO in my new BC jargon) a week later. Chemo treatment plan discussed and we find that chemo room is full so I go on a wait list. "Hurry up and wait" yet again. MO also orders a referral for vascular surgery so that I can have a port inserted to spare those useless veins. We go home and I spend the next two days on the couch learning about chemo drugs, Neupogen (man made growth factor that boosts white blood cells counts decimated by chemo), FairPharmacare and the Victory Program. Half a day on the phone dealing with the payment for Neupogen. Lucky for me (and I mean this) we do not have to pay the entire cost of $200 for each vial of Neupogen. I will need 7 vials for each of the 8 cycles! And I have to inject it myself. Papers and books everywhere.
A week later I got a call with a cancellation at VGH vascular surgery for my port insertion. That was good, something to do! Conscious sedation, a cute French Canadian vascular surgeon who was so fast we were still talking about chickens in Kerrisdale and bears near his house in North Van when it was finished. One more thing ticked off in preparation for chemo.
Fast forward through another week when I bounced from one set of emotions to another. We went to a 2 hours session of chemo teach and appreciated how reassuring and knowledgeable the nurse presenter was. That Friday the phone kept ringing. A PET scan ("Dr. Susan Love's Breast Book" says "no, this is not something for your cat or dog" - I love that book!) was ordered for Monday at 0745. I was off the wait list and my first cycle of chemo was also Monday. So, on October 15, also our 29th wedding anniversary, chemo started. I thought that was just fine - we will look forward to really celebrating our 30th, hopefully at the end of this journey. Dick did buy me beautiful flowers which are still looking good weeks later.
Next post will be more fun, I promise!
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| Dick and I surveying a possible Turkish home in August, 2012. |
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