Cancer and Christmas memories

Christmas for many, is not the happiest of holidays, whatever the reason. It can be full of stress, maybe due to expectations unfulfilled, family/friends dissension, too much commercialism and so on. For me I want Christmas to be a warm and fun filled time but the many years of my own dysfunctional divorced family of long ago must bring back memories that worry me. Even after we had started our own family, I found Christmas difficult.

Moving to Saudi Arabia in 1991 changed all that. Our 17 Christmases in Saudi were so much easier~~at least for me. We still had all the trimmings of Christmas with lights, a plastic tree with decorations but the crass commercialization was not there.  The most memorable Christmases of all were those spent camping in the Rub al Khali desert, also often called the Empty Quarter. None of us will ever forget those times; usually with 4 families including all the kids we would head out in a caravan for the long drive south. We would pitch a temporary camp just a few hours north of the big desert and early the next morning, the excitement would begin, as we let air out of our tires to head right into the desert. Finding the perfect campsite was always a big point of discussion often by radio as we spread out through the massive dunes. Once there, we would set up our encampment which would be home base for the next few days.

Our last big family trip to the Rub was in 2005/6 and it may be the most memorable. For one thing, it was the last time expatriates were allowed to enter the desert~~this seemingly due to the tension on the Yemen border. There was never a clear answer but we were blessed to have been able to camp that year. We were stopped by the desert police just before our entry point but they just wanted to take down our license plate numbers and we were free to go. We had departed Dhahran very early on Boxing Day; our family of 5, Dean and Marie French and their two boys, Wayne and Anne Smith and their two boys, and Lorne and Linda Stefan and their son and daughter. The Smiths were the only newcomers and for all of us old hat Rub campers it was special to introduce another family to the wonders of the Rub. Though we did not know it at the time, for our wonderful friend, Linda Stefan, this would be her last camping trip. Linda sported her bald head just as mine is now. Linda was doing chemo for her metasticized breast cancer, yet she did not let it stop her from from entering into all our desert adventures. She had a lot of hip pain but still searched for arrowheads, played games and showed her strength through her indomitable spirit. It was a magical time as we ranged across the desert, swooped down the huge dunes on sand boards or even in our vehicles, always a heart stopper for me. We found countless arrowheads and other ancient artifacts, ate amazing meals accompanied by excellent homemade wine. Our evenings always meant a big fire but if you stepped away from the light of the fire, the array of stars was amazing. The Rub is one of the few places left in the world where you are completely away from all noise and light from civilization.

And so it was that we returned to Canada in December of 2008. Dick had managed to get 3 extensions past the mandatory retirement age but finally we had to leave. In retrospect, it was a crazy time to come home; it was the coldest and snowiest winter in decades for Vancouver and Christmas was just OK as I started the reverse culture shock of re-entry.

Now it is 2012 and I am so looking forward to Christmas. For the past two days I have been running a worrisome fever with some accompanying aches and pains. Basically the help line doctor at the cancer agency suggested I tough it out and that seems to be working as the fever is down almost to normal and I am feeling better. Our old friends the Trayners arrive tonight and our house will be full of young and old folks. I am trying not to have any expectations as to how this will play out but the plan is to keep it low key, for me not to worry about anything at all. What will be will be. Our already brined 20 pound free range turkey is being delivered today from "Urban Digs," so how easy is that? The only two things that I plan to do for Christmas dinner are the stuffing and the gravy. Beyond that, I will supervise from the bar across from the kitchen. At least that is the loose plan. I will try hard not to micromanage nor worry about how everyone is doing. I will take care of my own self and retreat to my room whenever I feel the need.

One of the best parts of this is that Dick will get a break from being the main caregiver. There will be many others to help out if needed.

I wish for everyone, a good holiday wherever you are. No matter how tough it is going through cancer treatment there is usually a positive to be found. For me, it is again the knowledge that I have the support of so many people.

Back from the dark side...

What a difference a week can make! As I slowly recovered following my hospitalization I found myself  easily overwhelmed, impatient, tearful and at times, imagining the worst. The inactivity that my illness led me to gave my mind too much time to ponder dark thoughts that found their way in. I worried about my own mortality, but not in a positive way. I may joke about Darth Vader and the dark side, but truly I felt as though somehow I was on the dark side.

Sunday I woke up feeling better and for the first time in many days, was able to walk to the river and back on my own. I had enough energy to actually put decorations on our Christmas tree that we had bought two weeks earlier. We hung Christmas quilts and lights and I felt better.

Monday I had to be at the cancer agency at 0700 to have my blood drawn pre chemo. It was cold and dark outside but suddenly I felt really energized. It was as though a curtain had lifted and the darkness was gone. While I waited for the results of the blood work and my visit to the oncologist, I had coffee with my cousin and his wife who live close to all my medical action. John and Jane have made life much easier as they have lent us their second underground parking stall for the duration of my treatments. This is a huge blessing.

Meeting with Dr. Shenkier, my medical oncologist who had the results of the blood work, told me  that my hemoglobin had gone up dramatically and was actually within normal range as were my neutrophils. She wondered out loud how the hemoglobin could have gone up with only 2 units of blood. I jokingly said maybe they were wrong but I now knew that how good I felt was a reflection of those important numbers.

Chemo was back on and Tuesday I had my first infusion of Taxol, preceded by 20 mg of Dexemethosone, a powerful steroid, and 50 mg of Benadryl, an antihistamine. These drugs are used to prevent allergic reactions to the Taxol which is infused very slowly for the same reason. I was in the chemo unit for 5 hours but it went quickly and with no adverse reactions.  I came home feeling woozy but good. I am on a medication for several days to try to ward off the potential side effects of Taxol which are myopathy and neuropathy. The warnings for this drug are to "use care when operating car or heavy machinery." No driving for me but with Christmas coming, and with my steroid high still kicking in, I have made some headway in the realm of Christmas baking. I made lists awhile back and have become proficient at crossing things off rather than adding to it. I am learning that I have limits.

Our old family friends, the Trayners arrive on Sunday from Edmonton and the house will be full of laughter and good company. Our daughter Mary and her boyfriend Ross are also coming to stay that night and the next so what one Trayner has called the "inaugural Leighton/Trayner gong show" will begin with a dozen or more old and young folk filling the house.  I get to take a back seat in all the Christmas cooking preparations but have made it clear that I still want to have a supervisory role though I will try hard not to "control."

Though there is still a long road of treatment ahead, at least I have some understanding now of how illness can affect me and if there is another setback, I may be better able to tolerate it mentally.

Merry Christmas to you all!

Chemotherapy and a room with a view.

Last week was not one of my happier weeks. I may have felt happy and grateful with a cheerful and seemingly positive outlook a few posts back. However #4 round of doxirubicin, aka the red devil and cyclophosphamide, aka cytoxin did a number on me.  Doxirubicin is actually red in colour and is so toxic that if it escapes from the vein it can actually burn the skin and tissue and in worst case scenarios, create the need for skin grafting and even amputation. The things we learn while getting chemotherapy! Of course we know that there can be serious side effects but we all hope they will be minimal. For me, as mentioned in the last post, the S/E were manageable.

Or so I thought. A few days after my 4th and final infusion of A/C as we call the combo, I started to feel vaguely unwell. We already knew that my hemoglobin had fallen to 92 after cycle #3, normal being 120-155. So the oxygen carrying capacity of my red blood cells was diminished and I understood why I was not able to keep up my 5 km walks at the same pace and I also found cycling on even the slightest incline to be tough. I jokingly said to Dick that maybe I could use some EPO. No joke, as the next day, my oncolgist said they had tried EPO to boost the hemoglobin of chemo patients but it had not worked. EPO is used is some medical circumstances as well in blood doping in cycling as we all now know, but it was not to be for me. If my Hemoglobin fell to 80, a blood transfusion would be considered.

I must admit to a night of reflection after hearing that news. In 1994, my father died from a massive respiratory arrest following a blood transfusion after chemo at the very same cancer agency I have my treatments at. For my father, from diagnosis to death was a few short weeks. Though my circumstances are very different, it brought back all the memories in a flood, including the night of his funeral when our youngest son Andy, just 19 months old, was hospitalized for a a very serious GI illness that he probably picked up on the long flights from Saudi.

Back to my feeling unwell. As the days went by after that last A/C infusion, small things that for a healthy person would not really even register, started to add up. Low grade fevers, diarrhoea, shortness of breath, tachycardia (elevated heart rate), strange changes in unmentionable parts, nausea and more. I  called the nurse help-line at the cancer agency Wednesday and was sent off to a drop in for a look at the unmentionables. An expensive cream was ordered and I went home to wait and see. Thursday I got a follow-up call from the help-line and waited for my pre chemo blood work Friday. Mid afternoon Friday a kind and compassionate doctor called with my blood results. Not only was the hemoglobin 82 but worse, my neutrophils which fight off infection were almost non existent. All those little ailments I had complained of all week now added up. The long and short of it was that I was admitted to ER at the Vancouver General Hospital for anemia and neutropenia. With that diagnosis, there was no wait at all--it seemed that they wanted me whisked off to a safe room immediately.

VGH being a teaching hospital, meant that within hours, I had been examined by no fewer than 5 doctors with more to come. Chest X-ray, ECG, blood draws, swabs, IV with antibiotics, in short, a septic workup. My only real complaint was that it felt like the north pole and by the time a bed was found for me 11 hours later, I had 10 blankets on me.

The good news at 0245 was that a room on had been found for me as the previous occupant had gone for a double lung transplant in the middle of the night! Angel, (yes his name really was Angel) my nurse told me get ready for the view once I was settled in bed. Wow, I only wish I had a photo of downtown Vancouver at night -- fully lit up, mountains in the background and with a huge red  Christmas tree complete with a gold star on top of one of the towers. I felt better immediately! By morning the sun was shining on the mountains and the view was even more incredible. Even the bathroom had a bow window allowing for views all the way to English Bay and UBC. Mary called while crossing the Cambie Bridge and ascertained approximately where my room was located, told me where she and her boyfriend Ross were on the bridge and we waved at each other as they headed to Whistler for the weekend. Sorry, but by the time I had Dick bring my camera in, clouds had drifted in.

Meanwhile my hemoglobin had fallen to an all time record low of 65 which no doubt explained why I felt so sick. It being the weekend along with the disappearance of 4 tubes of blood destined for the lab, it took until Sunday for 2 units of red blood cells to be transfused. Monday AM I got a pass to go to my already scheduled oncology visit close by VGH. My blood results from an early draw that morning showed hemoglobin up to 92 and neutrophils also up to a healthier level. But Dr. Shenkier said no way for chemo as planned for today. She said no oncologist would allow chemo after what I had been through. So it is that I have a week's interruption and my first Taxol chemo is scheduled for next Tuesday. I have a week to recover and I suppose applaud the fact that I will no longer have Taxol #2 on Christmas Eve. I was discharged late yesterday morning.

The infection remains a mystery but this is common for cancer patients on chemotherapy. Coincidentally, I watched the show "Parenthood" last night on TV.  I had never seen the show before but had heard that one of the main characters has breast cancer. Well, last night's episode had Kristina admitted to hospital with dangerously low white blood cells (no doubt easier to explain to the masses than low neutrophils) which had allowed her to get an infection. Her Christmas Eve hospitalization was far more dramatic than mine of course, it being a popular TV drama but my view was far superior! I wonder what will happen to Kristina next week?

Chemotherapy and books...

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.

Buzz cut night at the Leighton's!

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.

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!

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:

• 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! 

Dick and I surveying a possible Turkish home in August, 2012.

Istanbul and Surgery: no "dear"s please

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.

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.
 

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.