Thursday, September 30, 2010

A weekend away

This is the weekend I go away with some of my most important people. So I will not be going in the run to end breast cancer, nor will my important people! If you know someone who is running this weekend, please consider donating.

Today, my son ran in the Terry Fox School Run with his entire school. If you are asked by someone who ran or walked in memory of Terry this month, please consider donating.

Big thank yous to my husband and boys for giving me the weekend off. Especially since Friday is my husband's birthday. <3

Wednesday, September 29, 2010

A good one-stop resource for breast cancer prevention

In response to her mother's death from breast cancer, Dr. Christine Horner developed a strategy to defend herself against the same fate. She has selected easy to make changes and presented them succinctly. It is a good one-stop resource for anyone wanting to learn where to start.

Monday, September 27, 2010

Monday's health links

  1. Is Vitamin C a mood booster?
  2. Health Canada wants better management of records, prescriptions and diagnostic imaging. As someone who has been carting around a binder of her own information, I agree. 
  3. Childhood obesity - doctors say parents could be doing a better job.
  4. The link between health care and poverty examined.
  5. And just in case anyone needs a refresher on how to read the nutrition label on foods here in Canada...

Thursday, September 23, 2010


After I had healed from surgery, I was ready for radiation.

Ok - almost ready. I showed up for my first appointment, the one where they run you through the CT scanner to map your body, with my drain still in. Um...turns out they can't map you with a drain inserted in your body. Once the drain comes out of your body, your topography will be different. I wish someone had told us that! We all had a good laugh, though! :-) And Jon and I got to watch the hokey, in-house informational video of what to expect during mapping and treatment.(I say hokey with love!)

A week or so later, the drain was removed (my home care nurse pulled it out - ick), and we returned to the Cancer Agency to get mapped. Going in the CT wasn't as scary as I thought it would be (I'm pretty claustrophobic). The staff working with me were really kind and gentle. I received the first two tattoos of the three I have (I think there's only three). A student got to do one of them and, well, let's just say I forgive her because she had to learn on someone (it's pretty big - think mole rather than freckle). Then we went away for a week or so to let the team map my body.

I received my radiation over 5 1/2 weeks. I understand that in the States, it is not unusual to have radiation for 8 weeks. I don't know if our system here in Canada has a different protocol, if dosages are different, or what. But I can tell you that 5 1/2 weeks was enough for me. After the first two weeks, I was pretty tired. But it was mostly the trip into town that was doing it. I was lucky enough to have great taxi drivers, my dad mostly. Sometimes my father-in-law, sometimes my mother-in-law, sometimes my husband. Half an hour into Vancouver from my home in Richmond, half an hour back. Other times, I took the bus and train. Those days it was about an hour into town and an hour home. When the actual radiation procedure only takes 10 to 15 minutes, it gets a little draining. I used to live a five minute walk from the Vancouver Cancer Agency - boy did I get nostalgic for that tiny commute!

The process of radiation was very simple and not intimidating at all. I arrived, dropped off my appointment card in the basket on the desk, changed out of all my clothes from the waist up, put on a cotton gown and waited to be called in. I was (almost) always offered a warm blanket before being escorted into the dimly lit room by one of a seemingly endless supply of friendly technicians. I positioned myself on the bed and raised my hands over my head to grasp two handles. Then I did nothing. While I made myself as heavy as possible, the technicians rolled and manoeuvred me into position and set the coordinates on the machine. Then they left the room and I got zapped. The radiation is delivered in a series of zaps, I think I got 4 or 5.  After each zap, one of the technicians would come into the room, check to make sure I was still in the right position, and remind me to be still. At every other appointment, a bolus was applied to my chest to help concentrate radiation on my skin so that it too was treated. A bolus looks and feels sort of like a heavy sheet of bubble wrap. When the day's treatment was over, I would thank the technicians get changed and be on my way. Easy!

Once a week, I was seen by a radiation oncologist, either the one who was managing my care or the one that was on shift. Mostly, they were checking to ensure my skin was holding up. After about two weeks, I was pink. By the third week, I was starting to look quite raw.  I was instructed before I began radiation to moisturize several times a day with a good quality water-based moisturizer (they recommended Lubriderm). While I was doing this, my skin was still degrading quickly. So I was given a prescription for hydrocortisone cream to apply daily as well. I am sure it helped but by the end of treatment I was a mess - and it continued to get worse for about a week. I was peeling like I had had a very bad sunburn, but the skin peeling off looked almost black. The area hurt to touch and wearing clothes was unpleasant. But, bit by bit it improved and by the time I went in for my follow up a month later, my radiation oncologist was very surprised by how well my skin had bounced back.

One last word - the people who looked after me at the BC Cancer Agency were remarkable. To a person, they were warm, friendly, gentle and respectful. They remembered what I was doing over the weekends and kept track of my boys' ages and interests. They welcomed my boys into the radiation room so I could dispel some of their fears about my treatment. They cracked jokes and laughed at my lame ones. Most of all, they treated me like I was a person who was getting better rather than a patient who was sick. That difference means the world to someone who is frightened.

Wednesday, September 22, 2010

Former British Columbia MLS Sindi Hawkins succumbs to cancer

Sindi Hawkins was an inspiring woman. She worked tirelessly both for her constituents and for cancer research. My condolences to her family and many friends.

Monday, September 20, 2010

Monday's health links

  1. Genetic links to ovarian cancer identified.
  2. I love this story! Winnipeg woman cut in half to remove tumour - then put back together. How fantastic is this?!
  3. Mammograms may not identify tumours in women in their 40s. This is from July of this year but I missed it. Did I mention that when I was sent for a mammogram to determine whether or not I had breast cancer, the radiologist did NOT see my tumour? Instead he found calcifications higher up near my armpit and my GP said how lucky I was that I had come in to check on that "red herring" of a pink breast. Of course, then my oncologist examined my breast, felt the tumour and sent me for a biopsy. The size of the tumour the mammogram and my GP missed - 8cm. Please don't trust mammograms - learn what your breasts feel like and pay attention to any changes in their appearance.
  4. Fashion week in Vancouver educates young women on the importance of breast self examination.
  5. UN official calls for greater funding for women's reproductive health issues.

Surgery - part two

So, we went to the hospital.

We were met by a lovely nurse who walked us through the day, from prep to recovery. First up - questions! We were a little concerned about whether or not I would be staying overnight. My mom was dead against me coming home the same day. Other people were equally concerned. But I trusted my health care folks who said that Jon would be able to help me with everything I would need, and if anything went wrong my home care nurses would come to the house. The intake nurse said that they would only send me home if I looked like I was alert and capable. If I had any concerns, I could stay in the hospital. Great.

After we dealt with all the details about how I would manage my drain (more on the drain in my next post!) and pain, I was brought in, gowned and placed in a bed to wait. I was visited by another nurse (who hooked me up to my IV), my anaesthesiologist, my surgeon and his student. And then we waited.

Jon was able to sit with me for most of the time, and that helped. I kept waiting for my stress level to escalate, but it didn't. Jon and I read and chatted and I was able to stay fairly calm. Calm, until Jon noticed my IV antibiotics hadn't been started. He could clearly see that while my saline was happily dripping away, the other bag was switched off... and he started to wonder why. Of course he did. He kept wondering and wondering until finally he decided that the nurse must have forgotten. So, what would a normal husband do...go and get the nurse, right? Wrong. Jon thought he should just go ahead and switch it on. NOOOOOO!!! Sit down - get away from that!!!  (He was joking.) If you know my husband, you can see I might have a right to worry that he would take it upon himself to help out a forgetful nurse. Oh my God. I can't remember laughing so hard. We laughed and laughed until I was worried I was going to pee out all my saline right there. Just then my surgeon and his student popped in for another chat; pulling back the curtain they saw me wiping tears from my eyes. Then we had to reassure them that, no, I wasn't freaking out about the surgery...just laughing at my husband.

Eventually it was time to go. An orderly came and got me and walked me down the hall to my OR. (Why did everyone else get rolled to their ORs?) When the nurses saw the notation on my chart that I was sensitive to tape and plastic dressings, they started bringing me different dressings to look at to give my approval. Are you kidding me? I don't know which one will work best! You decide! I'm lying here on my back waiting to lose a boob - I give you permission to pick the dressing you think won't give me a rash. Aaaaaaggghhh.

The anaesthesiologist put the mask over my face and away I went. When I woke up, I was in recovery, groggy and a little sore. No one is allowed into recovery, but a lovely male nurse snuck Jon in the back door so he could sit with me until it was time for me to go up to my room.

Once there, the nurses got me settled, reminded me how to care for the drain that was now hanging off the side of my body and, eventually, brought me some soup and jello. I sipped and nibbled until, blaaaaaah, I threw it all up. That was it, the night charge nurse said, "You aren't going home." Big mistake. I knew it wasn't nausea that had done it, I had had a huge bubble of air in my stomach and there was just no room for food. I should have gone home. I was in a ward with one other woman and 2 men. All night long I listened to beeping, snoring, moaning...oh was endless. The other woman in my room spoke in a voice more suited to announcing bingo at a rest home every time the nurses came to look in on her. I was up all night. I kept my iPod plugged tight in my ears, dozing when I could, but basically just trying not to scream.

I went home the next morning after getting the all clear from my surgeon. Recovery took a few weeks. I had to empty my drain several times a day and keep track of the quantity being drained. I was able to move around quite well and even went to see Olympic hockey and curling events, keeping my drain tucked close to my body lest I freak out my fellow Canadians. I was a little nervous about going through security on the off chance I would be searched but that never happened. (Good news for the security people!)

Hardest part of the procedure? Well, it was hard to sleep. I normally sleep on my left side and that is the side that was operated on. So, that sucked. It hurt, but I managed the pain with Tylenol 3s. I guess the hardest part was looking at the incision. I wasn't actually the first one to do that, Jon was. My home care nurse was changing my dressing when Jon walked through the room. He stopped to watch, looked at me and said, "It's fine. Go ahead and look." I didn't. I waited a few days. But his reaction had given me more courage than I thought I would have and, when I was alone, I did look at it.

Was I happy with what I saw then? With what I see now? Of course not. But it could have been worse. And you really can learn to live with the new topography, especially if you know you don't want to do reconstruction. I don't know if I want to or not. My oncologist is so impressed with the way I have healed, that he thinks I should go ahead and do it. But I don't know if I want to go through more surgery. And I have listened to the arguments on both sides of the reconstruction issue - from the gently opinionated to the loudly outraged. But I will make up my own mind about my body, thanks very much. (Although I appreciate your passion, oh vociferous ones!)

It's all how you look at it. I could have died and now I have a good shot at living. Now, when I look in the mirror, I don't see a breast that let me down. What I see instead is my body, just that. Only now, it's winking at me.

Wednesday, September 15, 2010

Surgery - part one

Breast cancer is typically treated with some combination of chemotherapy, radiation and surgery. The order in which these treatments are given will depend on the type of cancer you have. For my big tumour, my medical oncologist decided to start with chemo. The idea was, let's shrink it before we start cutting; that way we'll have a better chance of getting all the cancer cells.

And it worked. The chemo took my 8 cm tumour down to something so small my oncologist could no longer feel it. So, then my options were radiation and surgery. My radiation oncologist told me I could choose the order, but I should do both quickly. If my surgeon wasn't going to be able to remove my breast by early February (chemo finished near the end of December), I should get going on radiation. She was pretty confident that he wouldn't be able to (I mean, come on - who can just phone a surgeon and get him to squeeze in a modified radical mastectomy in a month...and at Christmas time).  Well, (turns out I can!) my surgeon said no problem and scheduled me for the beginning of February.

I'll tell you something about my surgeon - the only time I have ever seen him not smiling was the day he told me I had cancer. He didn't smile once during the whole visit. The look on his face as he cleared the door told me everything I needed to know. The words, "You have cancer," were an unnecessary punch to the gut, punctuated by the clicking of the exam room door. But, there is a nice thing about having a doctor with a really crappy poker face - if he's smiling, he isn't worried. So when Jon and I sat in his office discussing my upcoming surgery, his smiling face was a welcome relief. "Will I have loss of range of motion?" "No, but you will probably have some numbness that won't go away." "How long is my hospital stay?" "No stay - you'll go home the same day."  "How long is my recovery?" "Very quick. We want you to start using your arm as quickly as possible to help speed recovery along." "How many lymph nodes will you take." "A bunch. But I'll try to leave as many behind as I can." Oh. OK. This is pretty straightforward stuff then.

The reality check came from my radiation oncologist. When I brought up my surgeon's sunny outlook about my mastectomy, she looked me straight in the eyes and said, "It's going to be really tough. You are going to wake up, already bald but now missing a breast." And that's what I needed to hear. While the procedure would be straightforward, the results of it would not be.

Having a mastectomy is more than just the process of removing some flesh and some lymph nodes. We have an attachment (no pun intended) to our breasts. From a very early age, they define us in society. They are part of how we define ourselves, as women, as mothers. What will it feel like to not have that breast? What will I see when I look down? And I had weeks to think about it. Weeks of trying to imagine what the new reality would be. Soon after my cancer diagnosis, if I had been told it would save my life, I would have voluntarily had both breasts removed right then. But months later, when the panic and urgency have subsided, it felt absolutely surreal that I would be voluntarily walking into the hospital to have my breast removed.

So, with Jon's help, and with support from my friends and family, I just prepared. I thought about it. I talked about it. And I focused on the reason I was doing it. While I wanted to hold onto my body the way it was, I wanted my kids to have a mom more.

Monday, September 13, 2010

Monday's health links

  1. Aspirin may help prevent the return of breast cancer. The key may be aspirin's role in decreasing inflammation. This was published in February of this year. In August of last year, a study showed that aspirin may also offer some benefit against colon cancer. Here's another article on the same studies. Before starting aspirin therapy, talk to your doctor.
  2. More news on the removal of ovaries and fallopian tubes - in this study, it is suggested as a preventative measure for women who have the BRCA1 and BRCA2 genetic mutations.
  3. Is marijuana part of our future cancer fighting toolkit?  Here's Dr.Andrew Weil's take on it. He also recommends the documentary What if Cannabis Cured Cancer?
  4. Colon cancer may be on the rise in the UK (not sure what the stats are here in North America). How do you reduce your odds of getting it? You guessed it - more exercise.
  5. Bowel cancer may be linked to excess abdominal fat.
  6. 50 year study into the causes of cancer launched in Canada.
  7. Experimental therapy shrinks many advanced melanoma tumours.
  8. And unrelated to cancer (!), the Centres for Disease Control and Prevention found that three quarters of US babies are now starting out breastfed! That is nearly three times the number from 1980. Unfortunately, the rate drops off quickly at the 6 and 12 month marks. Hopefully, we can support those moms that are able to breastfeed  and make it easier for them to stick it out a little longer.

Sunday, September 12, 2010

New deadline for matching donations to Pakistan

Here in Canada, the federal government has extended its pledge to match charitable donations to relief in Pakistan to October 2, 2010.

If you can, please give.

Breast cancer, estrogen and your diet - part one

I am entering that stage of my treatment where I am starting to look more and more at preventing a recurrence. I do not want to go through this again, and I'm pretty sure everyone around me feels the same way.

So what do I do? First off, I know I need to get more exercise and eat less calories so that I will begin to lose weight.  I also need to adjust my diet to improve my overall health and, hopefully, lower my risk of growing another tumour. With that in mind, I am trolling the Internet, looking for everything I can find to help me make these changes safely. The key is finding information with good scholarly research behind it.

Please talk to your doctor before following the advice of anyone on the Internet. Treat my recommendations as jumping off points for your own research or conversation starters for you next visit with a health care provider. And, as with anything you are learning about online, consider the sources. I'll do my best to sort the sensible from the kooky, the solid from the flimsy.

Here's what I have found, so far:
  1. Why higher blood levels of estrogen are a problem and what you can do to counteract them.
  2. What food and drink choices can be made to lower estrogen levels?
  3. Diet advice from Sheryl Crow's doctor, a specialist in minimally-invasive breast cancer diagnostic and treatment methods.
  4. Foods that reduce estrogen dominance. From Livestrong. They recommend consuming flax seed. However, there are conflicting views on the use of flax while on Tamoxifen. Some studies show the lignans it contains may inhibit the growth of tumours and improve the effectiveness of Tamoxifen. Some patients say consuming ground flax seed helps them deal with Tamoxifen's side effects (cutting down on hot flashes!). However, lignans are also a weak form of estrogen, and studies are being conducted to determine if they impede the action of the Tamoxifen by blocking receptor sites on cancer cells. The advice I received from my clinical team nutritionist - one to two tablespoons of ground flaxseed a day is probably fine, but I should avoid higher dosages.

    Friday, September 10, 2010

    Pink fatigue

    Does it actually work? Painting things pink and selling them to raise money for breast cancer research, I mean. Because I have to tell you I never, and I mean never, buy them. I would much rather send money straight to cancer research (and I do) than bring those Pepto Bismal-coloured products into my house.

    What is the rationale behind them? Does the presence of a pink hair dryer in my bathroom communicate to my friends that they should also be donating money to the cause? Does my wearing a pink ribbon festooned scarf get the word out to people I pass on the street? Or maybe a pink swarovzki bedazzled charm hanging from my wrist is a subtle way to raise awareness while I am picking my kids up from school?

    There is already a huge backlash out there - people who think that breast cancer gets too much attention, at a cost to other diseases and conditions. And there are others who think that way too much attention is being focused on treatment rather than prevention. Now I hear people in stores saying that these pink products are just one more marketing tool, that Madison Avenue is using this disease to sell everything from cosmetics to kitchen appliances. Is this pink campaign eating up even more good will?

    Perhaps it's just me. But I would love to support cancer research every time I buy green tea, every time I buy olive oil, calcium supplements, walking shoes or yoga mats (in green, blue or raspberry!). I want to make my choice based on the quality of the product I am buying, and how it helps me live a healthier life - not on the colour of its packaging. And when I do support products that pass along a portion of profits to research, I want to know exactly how big a portion that is. Beyond that I will continue to send donations directly to organizations engaged in cancer-related research, as well as a host of other diseases.

    All I know is it's only September and I'm already bracing myself for the pink fiesta that is October`s Breast Cancer Awareness Month.

    Wednesday, September 8, 2010


    Please consider donating to relief in Pakistan. Here in Canada, the federal government will match donations until Sunday. Click here to donate to the Canadian Red Cross, here for the American Red Cross, here for the International Committee of the Red Cross or seek out another organization you believe in. The need is very great.

    Monday's Health Links

    ...sorry - Monday's links are coming on Wednesday this week. It's that time of year!

    1. Study finds that CT scans in pregnancy do not lead to a higher risk for childhood cancers.
    2. Removing fallopian tubes may prevent women from developing ovarian cancer. This research was conducted in my neck of the woods by the Ovarian Cancer Research Program at Vancouver General Hospital and the BC Cancer Agency. Between Vancouver and Seattle, we are a hot bed of cancer research.
    3. Doctors may be able to use targeted cancer therapy to help patients avoid many of the current side-effects. A new approach being tested uses RNA interference to target cancer cells while leaving healthy cells alone.
    4. Stand Up to Cancer will air on CTV, Global and CityTV at 8 pm on September 10. Click here to donate.
    5. This month, join us in the 30th annual Terry Fox Run for cancer research. Run, walk, stroll or hop. Or support someone else! Most areas will be having their run on September 19. Schools will be holding theirs on September 30. Please help us keep Terry's legacy alive.

    Friday, September 3, 2010

    New life, new choices

    15. Learn to play a musical instrument. Start today! I have downloaded guitar lessons from Little Kids Rock from iTunes U. The plan is Boomer and I will try to learn together. First up, learning to tune our guitar. :-)

    If you haven't yet heard of Little Kids Rock, they are a not-for-profit organization devoted to bringing free musical instruments and music instruction to underserved schools across the US. It is their belief that learning to play a musical instrument can be a transformative experience in students’ lives. Their ultimate goal is to bring music back to its rightful place in the academic lives of all public school students.

    From the Little Kids Rock website:
    In 1996, an elementary school teacher, David Wish, grew frustrated with the lack of funding for music education at his school. Realizing that he would have to take it upon himself to make sure his kids got a chance to explore music, David began offering an after-school guitar class to interested students. The classes became wildly popular, and as more kids sought to enroll, he decided to take the program national.
    In 2002, with initial support from musical luminaries BB King and John Lee Hooker, Little Kids Rock was born. What began as an informal project led by a single school teacher and a handful of volunteers has since evolved into a nationally recognized not-for-profit organization that has served tens of thousands of students across the country.
    With the support of Honorary Board Members Bonnie Raitt, Paul Simon, Slash, B.B. King, Ziggy Marley and a host of celebrated luminaries in the music industry, Little Kids Rock is poised to significantly extend its reach in the United States. 

    Thursday, September 2, 2010

    My chemo days

    It has been a long time since I have addressed my cancer experience, so I thought I would dive back in at chemotherapy. Wee!

    Thanks to movies and TV medical dramas, we all have a mental picture of what chemo looks like. When I was told I would be getting chemotherapy for 4 months, my mind immediately went to enduring weeks of being bald, weak, and puking. Already reeling from my cancer diagnosis, I wasn't sure how I would cope. Luckily, chemotherapy treatment has improved for many patients, including me.

    Don't make any mistakes, I did lose my hair. Almost all of it. When outlining my treatment schedule, my medical oncologist started with the announcement, "All your hair will fall out." When your doctor starts with that, it sounds particularly ominous. I mean, I might die here and you are starting with hair loss as something to prepare for?! I could not have cared less. Maybe because of that my hair decided, quite miraculously, to hold on. Every time I saw my doctor, he'd look at my hair and smile. "It's going to fall out!" And I'd smile and say, "OK." Then, one day it just gave up. Overnight, my hair started to eject itself from my head. Strands on my jacket, hunks on my pillow, clumps on the shower floor. One memorable day in September while I was walking my kids to school, a whole section of hair I had just tucked behind my ear blew past my face and just kept going. Ick. That night, with the help of my husband and with my boys looking on, we cut, snipped and shaved until I had a mohawk. Out in the world, I had a long brown wig that closely resembled my original hair. At home and wigless, my family was treated to punk mom. But it really did make it harder to keep the wig on when I was in public. So, eventually we went right down to cue ball. I also lost most of my eyebrows and eyelashes, my legs and, well, everywhere else. I felt cold and featureless. I described it to my husband like being pulled too soon from the primordial sludge. So I didn't pause in front of the mirror too often. And I invested in some cozy knitted caps to keep me warm.

    I also had days when I was weak and sore. As treatment progressed over weeks and months,  I came to days when I was so cold I had to take to my bed with a hot corn bag and tea. Some days I shook so hard my stomach muscles hurt for days after. But, later I would rally and feel almost normal. My immune system took a hit, and I was vulnerable to every bug that entered my house (did I mention that I have two small, germy boys AND that I was doing chemo during the height of the H1N1 outbreak?). Colds hit me hard and I found it hard to shake off a few chronic coughs. But eventually, I would recover. My joints hurt, a lot. Getting up out of a chair, I felt like I was in my 90's. But, in spite of that, most days I was able to walk for over half an hour at a time. Other days, particularly the cold and rainy ones, I took my mother and father-in law up on their generous offers to walk my son to and from school.  My mother took over laundry detail for the bulk of my treatment, saving me from all the lugging, pulling and hauling involved with doing that for 3 males. And wonderful people brought many of our meals. But I did almost all my other housework.  So, even though the weakness came, it was manageable.

    What never came was the thing I feared the most - the vomiting. I was often nauseated. I could get very, very green. On those days, my boys would follow me around the house with great love, offering buckets, towels and cuddles. If it was particularly bad, I would skip meals and choose instead to sip ginger ale and nibble on crackers. Add to the nausea the fact that food usually just tasted downright horrific (see my earlier posting about that!), and eating lost most of its joy for me. But I never vomited. The new steroids did a very good job of easing me through the treatment and allowing me to keep food in and weight on. I can't imaging how weak I would have felt if weight loss ever became an issue.

    So, if you are getting ready to do chemo, or know someone who is, I hope this gives you some comfort. While you may look like a cancer patient, you may not always feel like one. I had many, many days of feeling pretty OK. Especially compared to what I thought I was in for. So I guess my advice is, if you and your doctors feel that chemotherapy is the best treatment option for your cancer, you do not need to fear it. The road may be easier for you than you think.

    But...if you are doing chemo now and you are experiencing worse side effects than I did, please don't suffer in silence. If talking to your doctor doesn't get you any relief, talk to your nurses. Mine were full of advice for coping with nausea, constipation, sleeplessness, and joint pain. If you still need help, you may want to consider complementary medicine options. If you are in BC, click here for more information. The Canadian Cancer Society also has good information on its site, including descriptions of types of therapies that offer relief for a variety of side effects related to cancer treatment. In the United States, try the National Cancer Institute's website.