The Surgery

Tuesday, November 2, 2011.

If today was a bra, it would be a double D day, because it was a big, big day!

We woke up at 5:25 AM, 5 minutes before the alarm clock to go to St Paul Hospital, the first stop of our hospital crawl.

St. Paul, unlike my final destination for the day, has a nuclear medicine department, where my left nipple received a shot of radioactive tracer dye. The role of this substance is to drain via the nearby lymphatic vessels toward the local nodes where it accumulates and signals to my surgeon equipped with the proper detector which nodes she should remove. This procedure is called a sentinel node biopsy where hopefully they will find that the cancer hasn’t infiltrated my lymphatic system.

After this first stop, we continued our hospital crawl to Mount Saint Joseph Hospital and arrived around 8 AM. I first met with my surgeon who went over the surgery and drew where she would make the incision. Then a nurse asked for the fourth time in less than two hours for my birthday (so I expect a lot of presents this year) and offered me a stylish gown and a pair of green socks. My anesthesiologist then joined the party and things started to get very fuzzy...

… Although alertness did not all come back at once, I knew where I was and why my chest was killing me while I drifted in and out for about an hour in the recovery room.

I eventually regained full consciousness thanks to my bladder telling me it was time to get up. My surgeon came to see me. She described the purpose of the two clear and soft hand grenades attached to my chest by tubings disappearing under my bandages. They are drain to help prevent the accumulation of fluid. Although they have a key role in my recovery, I find them quite disgusting. My surgeon also told me that she saw “no cancer cells stuck to the chest wall” (yay!) “and the lymph nodes looked good” (double yay!!)

The definitive answer will come in about three weeks with the final pathology report. In the meantime it looks like all the cancer is gone and this round goes to the slayer.

Wednesday, November 3, 2011.

Last night was tough. After a relatively good afternoon slowly recovering from the surgery and visiting with my parents from Chilliwack, I noticed around 8:00 PM some swelling that made me quite concerned. The nurses and eventually the night doctor came to see and after discussion with my surgeon, it was decided to put a very tight wrapping around my chest and check the swelling in the morning.  Yikes that hurt! I don’t like taking drugs, but agreed to the morphine the doctor offered and it allowed me to sleep until about 3 AM. I guess the morphine had worn off as I woke up with a lot of pain, much of it in my ribs and back reacting to the compression bandages. I felt the need to move around a bit, thinking that it would help manage my back pain. Pascal, who had found a recliner and was able to stay with me, helped me walk down the hallway. Once we arrived by the nurse’s desk, things started to get fuzzy again – not a good sign after the surgery. Fortunately, a nurse found a chair for me before I fainted. I was wheeled back to my room and eventually fell back asleep until about 6:00 AM.  My surgeon came by shortly after and removed the compression wrapping. The swelling had gone down and her answers to my questions about the surgery made me feel better. When I asked her if in her expert opinion, she thought we got all the cancer out, she said ‘Yes’, music to my ears.

Pascal brought me a yummy breakfast, peanut butter on quinoa bread and a freshly made green juice. Everyone should be so lucky to have such a wonderful (and handsome) caregiver.

I shared my hospital room with another woman who had breast surgery. The first time she had it was 7 years ago and she was now having a recurrence treated. At the time of her first diagnosis, she was told that it was non-invasive, like mine, yet it came back. However, they didn’t test her lymph nodes, which is where it came back. This is why it was so important for my lymph nodes to be tested, even if everything is pointing to a non-invasive cancer.  

After visits from the person organizing home nursing, the physiotherapist who briefed me on the exercises I could start right away, and a final tutorial from a nurse who showed me how to empty my drains I was cleared to go home.

We were back home around 11 AM; it’s hard to believe not much more than 24 hours had lapsed since it all started.

Nicely installed on my bed, it did not take me long to fall asleep. I eventually woke up wondering what day it was. It was only 5 PM so I went downstairs to watch some TV before a yummy dinner.  I don’t seem to have lost my appetite, so that’s good!

It’s now getting close to bedtime again and I’m enjoying some time out of my compression bandages. I hope I won’t have to wear them too long, they kill.

Several studies I read throughout my research showed that the more support a cancer slayer has, the better the outcome, so thank you for your love, support, friendship, compassion, jokes, emails, dvds, and books. I really, really appreciate it and love you all. I think I’ll be up for some short visits this weekend. Please use the calendar to let us know if and when you’ll be able to stop by.

Hugs,

Lisa.

We Have a Date!

After an excruciatingly long wait, we finally have a date. On November 1, we will bid a sad farewell to my poor boobies.

Thinking back to my teens, I thought my boobies were just fashionably late and hoped they would be worth the wait. But alas, it turns out that they are actually big party poopers as they not only arrived late to the party, but they will also be leaving far too early.

Nonetheless, they were worth the wait (so long as you subscribe to good things and small packages!) My plastic surgeon said they were perfect; high praise from someone who sees many, many breasts!

The past several weeks have been a roller coaster. I usually like rides, but this is one I wish I hadn’t got on. When I look back on it now, I’m so glad each week is done and the wait is nearly over.

There have been some highs – like when I was able to change my surgical oncologist. The first one I met with, while experienced, didn’t seem to appreciate my many questions. I want someone who’s willing to work with me. It’s my body, my decisions. My new surgeon is a rockstar in her field. She has no problem answering lots of questions and I feel very comfortable with her. Studies have shown that the experience of your surgeon does impact your prognosis, so I’m very grateful and relieved to be her patient/groupie.

Tip #1: You will be assigned doctors throughout the cancer treatment process. If any of them don’t work for you, ask to see someone else. You always have a choice.

There have also been some downs. A big one was getting the MRI results back. From the MRI report, we learned that the cancer, while still showing no signs of invasion (Yay!), was spread over a larger area than we had thought. In fact, it appears to abut the chest wall (Boo! Bad cancer!) This was scary stuff and a very bad day. Compounding the already bad day was the news that the MRI spotted a small mass with benign features in the “good” boob. This little bit of news translated into more ultrasounds and a biopsy of the right breast. We’re still waiting on the results of this, although the radiologist is confident that it’s just a lymph node (fingers crossed).

In hindsight, I really wasn’t prepared for the MRI report. I didn’t know that mammograms and biopsies typically underestimate the spread of the cancer and that the MRI is much more accurate. I also didn’t know that MRIs pick up every little thing that isn’t absolutely perfect (e.g., a lymph node in your right breast) and that these little imperfections can be false positives, but still need to be checked to rule out cancer.

Tip #2: Mammograms and ultrasounds are useful imaging tools, but can underestimate cancer spread and even miss it entirely. If you need details, MRIs are the bee’s knees.

Another challenge over the last two weeks that has been creating a lot of downs is that I have been having pain in my armpit and chest wall on the left (cancer) side. I’ve talked to my nurse navigator and there’s nothing that can be done before my surgery. So, we wait and hope that it’s just stress. Physically, the pain is not a big deal -  just a slight bother. Mentally, it’s almost unbearable.

However, today it seemed a bit better. Now that’s a GREAT BIG UP!

Thank You Cancer Slayers!

Today was a big day for fighting breast cancer. Lisa’s Cancer Slayers, a team of 19 fabulous family and friends, ran and walked for a cure for breast cancer! 

Our team raised over $2000, doubling our goal of $1000. Thanks to everyone who came out to walk/run and who donated, I greatly appreciate the support! Our MVP fundraiser was Dani, who raised over $700! Amazing - thanks!

If you didn’t get a chance to donate yet, it’s not too late! You can still donate to our team at the following link:

http://www.runforthecure.com/site/TR/RunfortheCure2012/BCYukon?team_id=21367&pg=team&fr_id=1266

It was really great to gather together with friends and family for today’s event. It was an emotional day, seeing the names of people who participants were running for, some in memoriam, and knowing that my team was running for me. It’s still hard to acknowledge that I’m in Club ‘C’ now, but I know that I have a strong support network and it was never more apparent than today. So thank you Cancer Slayers! Thank you for coming out and being with me today.

I need to send a few shout outs to some rock stars of the day.

A huge thank you to my friends Amanda and Bob for suggesting we have a brunch after the run and offering to host. I loved hanging out with Lisa’s Cancer Slayers – it made the day all the more special.

Another big thanks to Mama and Papa Bear who woke up at 5 AM to drive in from Chilliwack for the race. I know you dislike early mornings as much as I do and I know you did it for me. Thank you, I love you both very much.

And finally, an enormous thank you to my hubby, Pascal, for organizing the team, co-ordinating tshirt distribution and spending all afternoon yesterday making crepes for the brunch. The next best thing to crepes in France are crepes made by a Frenchman! Tu es sensas! Merci beaucoup, je t’aime.

This year, our team sported 'Lisa's Cancer Slayer's' t-shirts. 

Next year, I'm thinking pink boas!

The Waiting Game

Since my diagnosis, I have been a very unwilling participant in the waiting game. Waiting for a mammogram and ultrasound, waiting a month for the second biopsy and the agonizing wait to find out about invasiveness, waiting for the MRI and still waiting for the MRI results, waiting for blood test results, waiting to hear about scheduling appointments with oncologists and doctors and anxiously awaiting for those appointments to happen and, finally, waiting for treatment to begin and END. I want to be done with this, I wait to be done with this.

To help cope with all the waiting, I’ve been doing a lot of research into what I can do to lower my risk of recurrence. Knowledge is a cancer slayer’s power.

Diet:

If you are what you eat, I am now a dark leafy green. These veggies, such as kale, collards, and broccoli, have been shown to have major anti-cancer properties.

‘C’ is for curcumin and that’s good enough for me. Curcumin is found in the spice turmeric and is a potent anti-cancer warrior.

Other good stuff: garlic, onions, berries, green tea, omega 3 (EPA & DHA), tomatoes, walnuts. In general, fruits, veggies, nuts, legumes are all good. Lucky for me, I’m already a vegan. I like to think that my vegan diet slowed down the growth of my cancer, keeping it from becoming invasive and spreading.

Sugar is the devil. In response to foods that cause your blood sugar to skyrocket (i.e. sugar, white bread, white rice, anything high on the glycemic index), your body produces insulin. Insulin promotes cell growth and is particularly effective at promoting cancer cell growth. Needless to say, sugar is no longer on the menu for me. This has put a big damper on my baking habit, but I did make some delicious anti-cancer brownies so there’s still hope!

Inflammation has also been shown to promote cancer growth. Inflammation is created in the body when you eat foods to which you have an intolerance. I had food intolerance testing down last January and now I religiously avoid all foods that I have an intolerance to (e.g., wheat, pineapples, kidney beans, pinto beans). Unlike an allergy, food intolerance is difficult to recognize and particularly hard to determine the source of as symptoms may not be immediate or may seem completely unrelated (e.g., a rash).

Toxins:

Are everywhere. These nasty little guys can disrupt normal hormone functions and tend to land in fat deposits. Who knew boobies could be a toxic wasteland?

Some toxins we can’t do too much about, aside from moving to a far away island (Plan B after lotto win). For the time being, I can’t do much about the pollution in Vancouver, but I can change the products I use to reduce the toxic load I’m placing on my body.

A great book called ‘There’s Lead in Your Lipstick’ and given to me by a dear friend (thanks Janet!) is helping me figure out how to look good without putting my health at risk. So far, I’ve gotten rid of all sorts of products made to improve my looks without any consideration for what they’re doing to my insides. How rude! These businesses won’t be getting my $ anymore. It’s not hard to find products that are good for my outsides and insides, so I’m making the change.  Besides, no one even noticed that I stopped wearing mascara weeks ago so it can’t be that important anyway.

Prior to my diagnosis, I suspected that hair dye might not be so good for me. But, I was invincible then – cancer wouldn’t happen to me! Now, I know better. The chemicals in hair dyes are carcinogenic (i.e., cancer causing). Over the past 10 years, I’ve played around with red, blonde, dark brown, but in my efforts to eliminate all carcinogens I’ve given up colouring my hair (gasp!).  Bye bye red, hello, um, dark blonde/light brown?

Now that I’ve stopped colouring my hair, I’ve discovered that I have white racing stripes coming in on the sides. These babies are going to make me look much faster at the Race for the Cure! Check out the link below if you’d like to donate to or join my team, Lisa’s Cancer Slayers:

http://www.runforthecure.com/site/TR/RunfortheCure2012/BCYukon?team_id=21367&pg=team&fr_id=1266

Exercise:

Exercise has been shown to stabilize blood sugar levels, reduce obesity and promote detoxification, thereby reducing the chance of recurrence. Cancer slayers need regular exercise. This Cancer Slayer is now biking to work, doing yoga, walking the Z Team, and trying out Qigong.

Mind-Body Connection:

Considerable research has been done on the connection between the mind and the body. Intuitively, most people realize that a positive outlook feels better and research has shown that this can help reduce the chance of cancer recurrence.

Despair can weaken the immune system and a cancer slayer’s immune system needs to be in fighting form. Yoga helps as does positive thinking, meditation, and visualization.

So, while I wait, wait, wait, I also breathe, breathe, breathe. This too shall pass and I will be better and stronger for it. I’ve also found it has helped me to reframe my goal. Obviously, I want to survive this cancer. But, the word ‘survive’ has such a life and death aspect to it that I’d rather use something else. So, I’m the Cancer Slayer because it’s really no contest, this cancer won’t come close to ending me.

Bye Bye Boobies?

Two good things happened this past week. We finally finished our year-long home renovation project and, more importantly, I had my first appointment with an oncologist. I am so grateful that we aren’t in the middle of renovations for Operation: Kick Cancer’s Ass!

The oncologist I met with is a surgical oncologist; she is the surgeon who will remove my cancer. If I need radiation or chemo, I will need to meet with a medical oncologist who will develop that part of my treatment.

The surgical oncologist and her intern both examined my breast and nipple - my left boob has never been more popular – and noted that my Paget’s doesn’t look bad at all. She also reviewed all my tests to date and, because my cancer is still non-invasive (thank God!), she isn’t recommending radiation or chemo. However, since my cancer is multi-focal (i.e., it’s occurring in two places – the milk ducts and the nipple), I will need a mastectomy. She’s also offering me a bi-lateral mastectomy (bye bye to both boobies), if I want it. The reason for this is that my risk of breast cancer in my other ‘unremarkable’ breast will increase by 1% per year if it’s not removed. So, by the time I reach 60 or 70 years old, my risk will be quite high.

To help me make the decision, I’m being sent for an MRI, which will hopefully give us more information on how far the cancer has spread within the milk ducts in my left breast as well as catch any early cancer in my right breast. Even if there isn’t any cancer in my right breast, I’m still seriously considering the double mastectomy as this definitely isn’t a process I ever want to repeat.

The nurse who was there mentioned that this oncologist has done more breast cancer surgeries than anyone else in BC. I’m happy to know that someone with a lot of experience will be working on me. Apparently, there have been studies showing that the level of experience of the surgeon does have an impact on the outcome of not just the surgery, but the likelihood of recurrence as well.

So what happens when the cancer and boobies are gone? Reconstruction!  It sounds a lot like a renovation project – so I should be good at it (at least the design part!). When radiation and chemo are necessary, breast reconstruction is usually done months after the mastectomy, but when radiation and chemo aren’t required, reconstruction can happen immediately after the mastectomy, during the same surgery. This is what the oncologist is recommending for me.  So, I am being referred to a plastic surgeon to talk about my boobie renovation project.

For me, thinking about reconstruction has been difficult. I’ve never placed much importance on how my breasts looked and certainly never thought about plastic surgery to change them in any way. Now, faced with the prospect of a double mastectomy, I’m forced to think about my body image and how breasts, or the lack thereof, fit into that.

My early thinking on the topic is that I wouldn’t care what everyone thought when they saw my flat chest. I didn’t when I was a late-blooming teen and I certainly won’t now. Yet, I don’t want to be reminded that I had cancer every time I look at my chest, see myself in the mirror, try on clothes, or go swimming.

Second only to fear for my life when we didn’t know the extent of the cancer, grief and mourning for the end of my healthy, cancer-free life has been the most challenging emotion for me. I am still angry at the loss of my ‘invincibility’ at such a young age. So, if by reconstructing my breasts I can regain some of that feeling, forget that any of this happened and banish that damn black cloud forever, I think I will likely go for it.

Rest in Peace Jack

I was so saddened by the death of Jack Layton today. I am taking his last letter to Canadians to heart. I WILL be optimistic, determined, and focused on the future in my fight against cancer and I will be loving, hopeful and optimistic in life. Because he is right - it is better.

Diagnosis

Diagnosis Day was a long time coming. I first went to the doctor for a rash in April 2011. The rash was on my nipple. Now there’s a word you don’t hear in everyday conversation, but you’ll need to get used to it if you want to read my blog! So, nipple, nipple, nipple, breast, breast, breast, boob, boob, boob. Everybody good? Ok, back to the story.

I’d had this rash on my nipple (once more – nipple, nipple, nipple) for over a year. It was pretty minor, a lot like the eczema I have on my toe. It came and went and, aside from a bit of itching, didn’t really bother me too much. Until April – that’s when it started to hurt. I went on the internet wondering what it could be and came across something called Paget’s disease, a cancer of the nipple. With a sinking feeling, I realized this closely matched my symptoms. Although, the images online of Paget’s looked nothing like my rash, so I hoped that maybe I didn’t have cancer.

I went to the drop-in clinic and the doctor gave me a cream, thinking it was eczema. The cream helped with the rash, but it still hurt so I went back to the drop in clinic and was referred to a dermatologist. The dermatologist initially wanted to send me for a biopsy because my nipple was a bit red and swollen, but when I told him I was still using the cream he said that it might just be a rash that the cream took care of and that I should stop using the cream and come back in two weeks. Two weeks later, the swelling had gone, although there was a small red patch and a wee bit of scaling. Nonetheless, the dermatologist said it looked perfectly normal and that it definitely wasn’t Paget’s. Overall, he seemed to resent the invasion of the internet into his practice.

He said that the rash was caused by friction. I questioned him because I’m not a runner, particularly after my ankle surgery late last year. But, he said it was definitely friction and that I should get something called ‘Body Glide’, which would reduce the friction. I did get BodyGlide, but it didn’t really help.

I decided that I didn’t trust this doctor’s diagnosis and wanted a second opinion. I went to the False Creek private clinic on July 13, where the doctor there immediately wanted to biopsy. I had the results the next day. I received the results on Bastille Day, the start of the French Revolution. It was also to be the start of my revolution against cancer, because I was positive for Paget's cancer of the nipple. Sucks to be me.

Tip 1: Trust yourself and listen to your body. There’s a reason it’s a cliché.

I found out about my diagnosis at work. It seems like work wouldn’t be an ideal place to receive news like this, but then, there isn’t a good place to find out you have cancer. In a sense, I was lucky because my colleagues were wonderfully supportive. One colleague, in particular, had experience in the health sector and knew exactly the right words to say. She was such a calming influence that night, I will be forever grateful. She was also able to get me in to see a family doctor the next day, since I hadn’t had one up until that point.

Tip 2: Get yourself a family doctor! I’m sure that if I’d had a family doctor, I wouldn’t have waited a year to get my rash looked at and I wouldn’t have had to pay $2000 to go to the private clinic for a biopsy.

I’m not sure if I realized it at the time, but I was definitely in a state of shock. I came home and my wonderful hubby, Pascal, had made me a great big dinner. For the first time in my life, I couldn’t eat. I had never understood how some people could lose weight under stress; I guess I had never been stressed enough.

The next day I went to my new family doctor, a lovely lady whom I liked immediately. She palpated my breast and, luckily, didn’t find any lumps – yay! She also set me up with an appointment for an ultrasound and mammogram the following week. Yikes! A week never seemed so long.

The feeling of shock lasted for several days and left me exhausted. The whole experience seemed so surreal, as if it were happening to someone else. One night shortly after my diagnosis, long-time friends of ours brought over a delicious dinner. For a moment, I forgot and it was like old times. Then, it all came rushing back. Hello again Black Cloud; will you never leave me alone?

That first week was really hard. It was a rollercoaster of worry and hope. Pascal and our two little poochies, Zeus and Zena (a.k.a., the Z Team), distracted me with walks, bike rides, and the Harry Potter series (excellent escapism if you need it). Telling my parents was a nightmare; ‘your child has cancer’ is not something any parent wants to hear.

Finally, the week was up and it was time for my mammogram and ultrasound. Neither found any evidence of a lump (double yay!), but the mammogram did find an area of calcification. This wasn’t surprising to me because Paget’s is almost always associated with an underlying cancer. The prognosis is much better when there isn’t a palpable lump (as in my case!).  The theory is that the cancer begins in and moves through the milk ducts to the nipple, which then results in the rash. If I am lucky in any way, it is that the Paget’s may have given me an early indication of an underlying cancer. If I hadn’t had the rash, I wouldn’t have gone to the doctor until there was a lump.

A mammogram was also taken of my other breast. The radiologist report states that this breast is ‘unremarkable’. I’m pretty sure that’s radiologist-speak for ‘fantastic’:)

Next step: a core biopsy of the area of calcification.

My core biopsy didn’t happen until August 11. The wait seemed like forever. When the day finally came, I was nervous but looking forward to finally finding out what the cancer was doing. The procedure itself was uncomfortable, but not that painful. I was much more worried about the diagnosis.

We got the results on Aug. 17:

Intraductal carcinoma, solid type, nuclear grade 3 with comedo necrosis, retrograde lobular involvement, distorting fibrosis and microcalcifications.

Quite a mouthful, isn’t it? There are two key takeaways from the results: 1) Intraductal carcinoma (a.k.a. Ductal Carcinoma In Situ, DCIS) means the cancer is within the milk ducts and hasn’t spread to neighbouring tissue (i.e., it’s non-invasive) - this is really good news; and 2) nuclear grade 3 means that the cancer cells are dividing very fast (i.e., it’s aggressive) – not so good.

While the aggressiveness of the cancer is scary, radiation and chemo both work best on cells that are dividing quickly. So, if I have to do either or both, they will probably be more effective than if the cancer was less aggressive.

We are now waiting to hear about an appointment with an oncologist to plan out Operation: Kick Cancer's Ass. The usual treatment for Paget’s with DCIS is surgery, either a lumpectomy or mastectomy. Surgery may be followed by radiation and/or chemo. Usually, women with DCIS don’t get chemo and I’m hoping that will be the case for me.

Stay tuned!