Think Dirty and Get Clean!

ThinkDirthThis post is more about information than anything, but is also about my journey to better health. Funny, as I thought I was very healthy before my cancer diagnosis – but clearly there is always room for improvement! Most of my adult life I have used the same makeup brand – MAC cosmetics and the same lip balm – Blistex. However, since my induction into Cancer College and the Triple Negative Breast Cancer Club, I have decided to take a closer look at all of the products that I use in my household, on my body, and the food I choose to put in my body. Next to food, makeup was the next thing on the list that was brought to my attention by both my chiropractor and my naturopath. They both recommended an app for my iPhone called Think Dirty®. Think Dirty® is an application that is specifically for cosmetics and personal care products. When you scan or enter a product into its database, it will rate it for toxicity on a scale from 0 – 10. It will also provide you with the list of ingredients within each product, also rating those ingredients on a scale from 0 – 10. Not only does it rate those ingredients however, it also tells you how each ingredient is affecting our health and environment, and shows any warnings from regulatory agencies. For example, I learned that a common ingredient in lip balms is petrolatum, which is 10/10 for toxicity. Petrolatum can not only be a skin irritant, it is a carcinogen, can disrupt hormones and as such, may be a link to breast cancer. Certain fragrances can also disrupt hormones, which may link to breast cancer. Finally, this amazing yet simple app provides suggestions for products that are less harmful to you. Are they paid to suggest these particular alternatives? That, I don’t know. I just know that I will certainly try some of their suggested products due to the lack of toxicity in their list of ingredients. Needless to say this app is just the ‘tip of the iceberg’ of a huge learning curve for many of us. As we become more ‘organically’ aware, it may seem like it is impossible to change everything around us. Individually, we cannot change the air we breathe (unless we relocate), or the pollution in our rivers, lakes and oceans. But we can make a small difference in the world by changing our own actions and choices. There are the obvious things we can do to contribute positively to our environment, such as picking up litter when we see it. However, I dare you to take it one step further and make it personal: stop supporting brands based on just habit and marketing. Instead, start making decisions and choices based upon your own health needs and knowledge. For starters, I am now looking for skin care products with a 0/10 rating for toxicity. I buy foods that are organically grown – without pesticides whenever I can. I avoid refined sugar and GMO corn products at all costs. I look at every ingredient listed on the packaged foods I buy now. I need my body to be as healthy as possible. I am not a believer that one can ‘beat cancer’ or any other disease via treatment alone – changes in our lifestyles are also needed! Why wait until tomorrow when we can each start today?

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New Beginnings

My new look!

My new look!

Well I did it. I shaved my head. I now officially look like I have C – or like Sinead O’Connor – whichever way you want to look at it. My hair was falling out in handfuls each day to the point where it looked just plain awful. It became thin, scraggly and itchy! So after days of saying I wanted to buzz it off soon, Kirk acquiesced and asked if I wanted his help with this inevitable task. Indeed I did.

I closed my eyes until the buzzing of the hair trimmer was almost finished. When I looked up I saw a person with C (cancer) and I cried. The moment I’ve been dreading was here, where I actually look the part. Kirk held me gently in his arms and assured me that I looked simply beautiful. I wasn’t so sure about that yet, but acknowledged that it was a moment of ‘moving forward’. While I still have stubbles, I know they will dissipate over the next week or two. I will be bald. I’m now okay with that, as I feel confident this will all become another chapter in my long book of life.

Moments after my head had been shaved, I was in the shower and  I experienced the feeling of the water trickling over my naked head for the first time that I recall in my life. It felt so funny. As I dried myself off, the water tickled my scalp and then suddenly my head was cold! I giggled. This new feeling was somehow liberating. I was free of the dead hair. No more hair washing or drying over the next few months. One less task to worry about.

The most humorous moment in all of this was when I laid my head down on the pillow: my head felt like velcro – if it is at all possible to imagine a body part as being velcro. As the little stubbles stuck into the pillow, not allowing my head to slide with ease as I changed positions, I giggled again. This will take a little getting used to!

Yes, I will wear my wig when I’m out in public so that I don’t look like a walking advertisement for C . But when I’m at home, I like to feel ‘free’. I now have the fastest showers ever – no shampoo or conditioner, and the leg and armpit shaving are down to a minimum. Very liberating indeed! Of course I will be ecstatic when I’m finished chemo therapy and my hair begins to grow back. Until then, I think I will enjoy this simplicity factor that has entered into the ever-so-complicated new chapter of my life.

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No More City Hair

Yes that is all my hair :-(!

Yes that is all my hair :-(!

As a girlfriend quite succinctly described it, “…when you are going through chemo therapy and you wake up one day with your hair feeling like it has been in an elastic too long, you know that is the sign your hair is about to start falling out.” It is a perfect description of course; if you are female and have long hair that you sometimes put an elastic in, then you can relate to that. Generally speaking, your head just feels sore.

photo 1 This soreness of one’s scalp is clearly a sign that your hair is all dying, and the same day that process began, I noticed more hair than normal come out upon brushing. The next day, more and more of this straw-like hair would come out even if I just touched it. The past couple of days, hair just comes out in handfuls when I run my hands or comb through it. The interesting part is that, although I now have about 1/3 of the hair I started with, I was truly blessed with an abundance of thick hair so there is a LOT to come out.

A few men I know who are bald, have just said “ah, it’s just hair – it’s overrated”. But for women, your hair is your ‘look’. Women pay hundreds of dollars to have their hair ‘done’ just the way they want it. Hair, for some women, can be their ‘crowning glory’ or to others it may simply be a fashion accessory. At times we choose outfits to match how we are going to wear our hair! Sometimes it can be a ‘statement’, but generally speaking, it is an extension of how we are feeling in our hearts.  I really liked my hair. Given it was long and thick, I could have curly days, or  straight days. When I was in Panama, I fondly referred to the straight hair style as ‘city hair’ because only in the typically-air-conditioned metropolis of the city could i get that style to last for the day due to the relentless humidity. I could have sporty hair in a ponytail, or conservative hair in a bun. I will miss those all of those days. I know it is ‘just’ hair, it will come back, and that those days will return, but it does take a long time to grow long hair!

Needless to say, I have found myself mourning over the loss of my hair. The tingles started on Thursday, June 26th – the day after my youngest daughter’s graduation from high school. The angels heard my prayers and allowed me to keep it for that special day – thank goodness. It is now July 1st and I worry that in a day or two the shaver will be plugged in and used to level the remaining strands of hair down to my skull. Why does C have to be SO dehumanizing? Next I’ll be asking myself whether I need to put on my boobs AND my hair today?”

Chemo on June 27th managed to distract me marginally from losing my hair, as the nausea once again hit hard. As of today, Im just starting to get my strength back by eating soup and generally bland things, drinking lots of water, and taking lots of anti-nausea meds. Each day is another day behind me in this C journey. While this post is a bit of a vent, I’m still trying to keep my brain focused on kicking C to the curb and crossing the ‘finish line’, where hopefully I will find rainbows and sunshine forevermore – or at least hair and breasts again ;-)!

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Hair Angels


Shopping for new hair is an interesting experience. Wig shopping is not something I ever thought I’d be doing. It is almost liberating in a way though, as it allows you to try on styles that you never thought would suit you. How many times have you wondered what your hair would look like really short, or drastically different than what you have, but never had the courage to make the change?

Wigs vary greatly in price, anywhere from approximately $200 – $3000. You can get ‘heat proof’ wigs, so that when you’re cooking it doesn’t singe (not kidding). You can also use straighteners and curling irons on these ones. There are synthetic wigs and there are real hair wigs. I didn’t choose anything too high end, as I’m hoping that it won’t be something that I’ll need for too long. I am happy with my choice – and no, you don’t get a sneak peek yet ;-)!

There is a wonderful store in Peterborough called “My Left Breast”, which is where I bought my wig and my mastectomy bras. The store founder is Bridget Leslie, a breast cancer survivor herself and somewhat of an angel. In fact, Bridget and her staff are all amazing; they are fun, upbeat, positive and real. It took me four or five visits to decide which wig was for me, and each time they were patient and encouraging. During one particular visit, Bridget said she was about to make a phone call to tell a woman she had won a $500 shopping spree in her store, thanks to a distributor. The woman who won could not have afforded anything new, but had visited to see about any possible donations. I was touched.

When I arrived home yesterday with my wig and a couple of hats in tow, I said a little ‘thank you’ prayer for the fact that we have insurance that will cover a large percentage of the costs that I’ve had which go along with C. Just like mastectomy bras, wigs help a woman to feel as normal as possible during a period when nothing much actually is normal. As I curled up for my afternoon nap, I thought how amazing it would be to ‘pay it forward’ and help someone else obtain these things who otherwise may not be able to have them. I just didn’t know how to make that happen.

After dinner, my mom called to say my sister Janet and her husband Rick wanted to come over and visit, as they were in from out of town (about an hour away). Five minutes into our visit my sister said “Mom told me about Bridget’s store and how you raved about her. Rick and I are thinking of running a charity golf tournament in Peterborough and having the proceeds go to My Left Breast, to help women who cannot afford the things there. What do you think?” I cried. The angels and the universe made it happen – just like that. I couldn’t be happier! Hair angels DO exist :-)!

This morning I had the pleasure of calling Bridget and telling her the good news. Needless to say she was thrilled! My part will be to help spread the word, as sadly there isn’t much else that I have the energy for right now. But I’m good at spreading the word about good things and know my friends are too. I have TEN friends fighting the ‘girl fight’ against C locally. Most have been in the ‘ring’ already and had their surgery, chemo and radiation. They are now in reconstruction and healing and modes. These women have all been a tremendous support to me and I’m incredibly grateful. I have no doubt they will help to spread the word on this golf tournament, as they have all be helped by Bridget and her team at some point in their journey. I will be posting further information on Facebook as it progresses. Please help to spread the word too!

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Dancing with the Red Devil

Dancing with the Red Devil

Dancing with the Red Devil

The chemo tsunami hit. The Red Devil kicked my butt! Every day for the first six days after receiving the Red Devil (Adriamycin chemo) and his cohort Procytox into my blood stream I woke up extremely nauseous and fatigued. Some of those days I’m not sure how I made it down the stairs from my bed to the couch. There, I would subsist until about 1pm, at which time I would stabilize for about three or four glorious hours. Nausea makes you unable to think straight, unable to focus, unable to do much really. It is important to eat – even throughout the nausea – so it was a challenge throughout the week to figure out what to eat and in what order, so that the food didn’t bring on more nausea. Most of my daily intake was soups and protein smoothies (filled with veggies and other nutrients) – as bland as they could be. Thankfully I’ve managed to not lose any more weight! The short reprieve from nausea on the fourth day after receiving the naturopathic intravenous Vitamin C (IVC) treatment was a pleasant surprise for sure! Fatigue was also a major factor during those days, as I had little to no energy for longer than about a ten-minute stretch throughout the day and by around 6pm, I was on my way back down the spiral pole again.

Nine days post chemo treatment, I actually feel ‘human’ again. I started feeling better on Thursday, but still took anti-nausea pills in the mornings and never left the house up until yesterday. Visitors were kept to a minimum, and only short, 10-minute visits could be tolerated at best. Yesterday however, I went for a short walk around the block in the late afternoon and still felt good afterwards!  Today I woke up after a good sleep, feel pretty normal with no anti-nausea pills needed, and am looking forward to seeing how I’m going to spend my day :-). I know the fatigue factor will still be in the background, so will not overdo it by any means. The best part to all of this though, is that it appears that I’ll be up to going to my daughter’s graduation in Toronto on Wednesday – with hair still in tact hopefully (cross your fingers for me)!

It is an interesting thing, human behaviour. When I first found the lump and pondered whether it was cancerous, my thoughts were to ignore it and it will go away – or perhaps I’ll die quietly over a long period, without anyone knowing. But then it kept growing and actually became visible! When I dug up the courage to have it checked and was told that I had breast cancer, my first thought was to have the surgery done to remove it and then treat C holistically.  However, when I was then told I had a much rarer type of breast cancer called Triple Negative Breast Cancer (TNBC), I knew I had to make more unpleasant and harsher decisions.  This is a fast-growing, fast-spreading cancer and needs hard-core artillery to defeat it. This is when I knew I had to ‘dance with the devil’, which in my mind, was the chemo and radiation routes. Then I learned about the Red Devil and its comrades – the other chemo types. My decision to attack TNBC via traditional chemo therapy simultaneously with holistic methods was still the best one in my mind. Both methodologies have done their research on my behalf and for that I’m grateful. In Peterborough, neither ‘team’ necessarily wants to acknowledge the other team, which is okay with me. It is my body that will benefit from mixing with both teams.

Dancing with the Red Devil is not fun, but it is one I feel I must do. Recently, it has even come under fire because studies show it can have a toxic effect on the heart muscle, leading to the possibility of heart failure. These are the chances we take in hopes of having a ‘normal life’ ahead. Amazing isn’t it, the risks we are willing to take with our lives? It does suck some days and I do question my willingness to participate in this barbaric side of medicine.  However, I just have to BELIEVE. Believe in the life I have ahead of me; believe in the knowledge behind traditional medicine; believe in the knowledge behind holistic methods; believe in the power of my healing mind through positive thoughts; believe in ME. I’m oh-so-grateful for these good days, with the sun shining and some vitality returning to this body that will allow me to enjoy these days :-)! I know there are many more days, weeks, months and years ahead – of more-than-good days – and I am simply biding my time, doing my ‘work’ and awaiting real living again!

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Morning Look?


Photo Credit: Kevin Painter

Photo Credit: Kevin Painter

It is currently the fourth day since my first chemo treatment. When I saw this photo that my friend Kevin sent, I laughed – and laughing is always a good thing! It reminded me of how I feel when I look in the mirror in the mornings these days. So far though, I have still have hair!

Typically, I awaken feeling nauseous – it’s like really bad morning sickness, only I’m definitely not pregnant, lol. There is also this level of deep fatigue that doesn’t seem to go away throughout the day. They gave me drugs such as Emend, Dexamethasone, Zofran within the three days immediately surrounding the actual chemo treatment and then Metoclopramide to use as needed with nausea. I’ve already used them and yes, they do help for a little while. So far I’m mostly sticking to soups and lighter foods, as the heavier ones haven’t fared so well :-/. In addition to all those meds, I also get to have a shot (yes needle) of Neupgen every day for seven days – did I mention needles are not my favourite thing? I’m learning that it is something I have no choice but to get used to so I’m sucking it up. Thank goodness Kirk is a great nurse, as he lovingly administers them each day as I turn my head so that I don’t have to look! By afternoon, I start to feel human for a couple of hours and by about 6pm I’m typically exhausted and barely able to hold my head up it feels so heavy! However, I’m quickly learning my thresholds regarding visiting (I had to see my Daddy on Father’s Day!) and even chatting on the phone and am abiding by them. Many people warned me “listen to your body” and they will be happy to know that I am doing just that!

Today was probably the worst morning as far as nausea was concerned. However, I went for my IVC (IV Vitamin C) today and felt SO much better afterwards. Not quite ready to go out dancing yet, but it is certainly encouraging. If I feel this much better after each one I will be counting the days between them!

I know these days are cyclical within the treatment and am looking forward for the ‘good’ days to come back quickly, as my chin is up and I know they will. I’m incredibly grateful for the messages, cards, gifts and amazing food that keeps arriving at our home :-). Everyone has been extremely thoughtful and it does not go unnoticed! With that, I’m keeping my post short today. Just wanted to share this brief update along with the amusing and artistic photo :-).

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The Devil is in the Details

Red Devil Going In!

Red Devil Going In!

Baby steps is not a term used in Cancer College – in any way! Each step feels like a giant, big-girl step, as I progress from one hurdle and onward to the next. This week I made a few big-girl steps, as I: had a Portacath® surgically installed to provide easy access for chemo; had my first IV Vitamin C treatment; got my first new ‘mastectomy bras’; picked out a wig; and now, even have my first chemo treatment under my belt! Yay!!!

The doctor, nurses, and anesthesiologist were all amazing during the Portacath® surgery. It was only about a twenty minute process, with the perfect cocktail, as I faded in and out at just the right times – truly the best experience with anesthetic yet! The area of insertion is still quite sore, but I have been assured that it is well worth the short-term pain for the long-term gain and today was proof of that. The result was no needles today – just a plugin to my new, ‘bionic woman’ component.

The Red Devil itself.

The Red Devil itself.

I had been told that during the first four sessions of chemo I would be receiving a combination of two types of chemo: DOXOrubicin also known as the Red Devil during the first twenty minutes, followed by Procytox. The Red Devil has a reputation that precedes it, and while today it was uneventful, it can be like a tsunami coming into your body. It is often used for Triple Negative Breast Cancer as well as others. This one makes your urine turn orangy-red. Very funky! The second is Procytox®, which is clear however typical symptoms may be nausea, vomiting, diarrhea and possible changes in finger and toe nail characteristics. Thus, I was given a pile of pills to take before treatment today to have on hand for warding off nausea, along with seven vials of Nupygen that will be injected first by a nurse each day, and then by Kirk (as I don’t think I will be able to handle that). Down the road, the last four sessions of chemo will be even more hard core, and I’ll save those tidbits of info for another blog.

As much as today carried immense trepidation with it (not to mention it also happens to be Friday, the 13th) it was fine! My sister Brenda was there for support as well, and it was actually one of her best friends who was the administering nurse. As such, there were some great jokes, laughs and the atmosphere was kept very ‘light’ – which I truly appreciated! I went home and slept for a while, and am really only experiencing fatigue. Thank goodness! :-). It was the beginning of the next big girl step that will get me closer to the finish line where I WILL win. I look forward to standing once again on the beach of Panama, with my arms spread wide, saying “I did it! I WON!”

Me enjoying the coziness of the beautiful quilt that I received from some awesome C friends who have also travelled this journey before me. Paula & Annette you rock!

Me enjoying the coziness of the beautiful quilt that I received from some awesome C friends who have also travelled this journey before me. Paula & Annette you rock!


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Preparing for Chemo

Fly Like a Butterfly

Fly Like a Butterfly

How exactly does a person prepare for chemotherapy? My stomach has been in knots on and off, in apprehension of starting chemotherapy later this week (Friday morning to be precise). It seems that every time someone asks when it is starting, my blood flow freezes.

Is it better to go in ‘blind’ I pondered, or informed? My choice is always to be well-informed, so I’m not about to change at this point. Knowing the good, the bad and the ugly prevents most unpleasant surprises.

Perusing through the leaflets and booklets that the oncologist sent me home with, the one that stood out was titled Safety at Home After Chemotherapy. It includes a list of safety guidelines for 48 hours after receiving chemo. They include a few jaw-dropping points such as:

  • Sit to use the toilet. Close the lid and flush the toilet twice after going to the bathroom;
  • Wear latex disposable gloves and use paper towels at all times while cleaning up any waste (vomit, urine, stool) or handling soiled items;
  • Place all items in a sealed plastc bag and put in garbage when you are finished with them;
  • Avoid having soiled articles come in contact with your clothing;
  • Use a condom during sexual intercourse to protect your partner. (As IF that’s going to happen within 48 hours!)

Why do I feel like I should be shipped to Chernobyl?

Friends who have gone through this tsunami-like treatment before me, describe symptoms such as the following:

  • Losing hair (not exactly a surprise);
  • Losing eyebrows, eyelashes, nose hairs, leg hair and any other bodily hair you can possibly think of. While it will be awesome to not have to shave my legs or armpits for a while, other hairs have more of a purpose – like the ones in your nose!
  • Neuropathy of the hands and/or feet;
  • Mouth ulcers;
  • Achy bones;
  • Nausea, vomitting;
  • Increased risk of infection (one friend had H1N1 due to a depleted immune system!)
  • Toe nails and finger nails may fall off;
  • Memory and concentration problems (already experiencing both of these as a result of information overload and just being overwhelmed by it all!);
  • Sleep problems (have had these for a while too, so that will be nothing new!).

Everything surrounding C IS  fear-based: doing chemo treatments; not doing chemo. Doing the holistic route; not doing it. Doing nothing. A large part of my ‘gut instinct’ in this comes with the feeling that the Universe is guiding me here – and that is what has ultimately helped me make the difficult C decisions thus far. We have to believe we are being guided from above – or we would all do nothing, simply due to the mass amount of fear involved. The big C IS a scary thing – absolutely no doubt about it! If you do nothing, you WILL DIE.

My doctors have informed me that chemotherapy has very positive results with Triple Negative Breast Cancer (TNBC). The Mayo Clinic also has reported that immunotherapy is also proving to be very beneficial with TNBC – and in some cases showing ‘dramatic results’. Thus, I’m choosing both. I will be supporting my immune system via my naturopath while I receive chemotherapy. I feel like I’m going into this with a global football team surrounding me – empowered by knowledge and buoyed by as much support as anyone could ever ask for! Look out C, the D-Team is coming in :-)!

“It is your REACTION to ADVERSITY, not the adversity itself, that DETERMINES how your LIFE’S STORY will develop.” ~Dieter F. Uchtdorf

*Photo credit: The photo in this blog is one of many amazing photos sent to me from a dear friend in Panama who lifts many of my days with the beauty of his photography :-).

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Cancer College

2014-05-29 19.03.22It has just been approximately a month and a half since my unexpected enrolment in C (Cancer) College  or CC for short. What an uphill learning curve!

In month one of this new college experience, I have learned the difference between the various types of breast cancer: Estrogen, Progesterone, Her2 and the winner in my case….Triple Negative. This ‘course’ also teaches what the staging letters T, N and M stand for in CC, and that the reference to stage in this school has nothing to do at all with acting. Furthermore, CAT scans are not anything which involves mi amiga, Cat – thank goodness for her. Through trial and error I’ve discovered that appointments which include bone scans – and anything else which makes me horizontal in a hospital for more than five minutes, are much less stressful when combined with Lorazepam.

I’ve read numerous articles for and against chemo and radiation therapies, as well as learning about multiple products available to help with nasty side effects of both chemo and radiation therapies. Some of these include: cold caps, mistletoe, IV Vitamin C, Maduka honey, magnesium, iodine, I could go on and on. By the end of each day, I’m typically on information overload –  as if I’ve been cramming for an exam! However, I’ve always felt that being well-informed is the only way in situations like this, so I’m learning to sort through what is important and what is not, so that I’m not continually overwhelmed. Besides, there has to be room for a few smiles, laughs and a  little enjoyment still!

In month two of CC I have graduated from newly diagnosed to post-surgical. I have thoroughly investigated insurance coveragewhich as we know, is a multi-billion dollar business, especially when it comes to the big C! Most private insurance plans cover a majority of costs involved with C. In fact, when prescribed by your physician, they even cover costs of wigs or head accessories; mastectomy bras; and prosthesis! Depending on your plan, they may also cover specific medications prescribed which support the chemo (which can cost as much as $3000 per injection); massage therapy, naturopathic visits and acupuncture – all with limits of course.

Regarding chemo therapy, I’ve learned that there are numerous different chemo cocktails, which are personalized depending what type and stage your C is. The number of rounds that you will receive of chemo depends on the type and aggressiveness of your cancer. The reaction each person has to their cocktail is very personal, ranging from working throughout treatment duration with no hair loss, to “wishing you were already dead”. Thus the best advice given has been: do not prejudge as to your own reaction, just wait and see. You have a choice of receiving your chemo via either a PICC Line or Portacath. A PICC is a Peripherally Inserted Central Catheter, which is essentially an intravenous (IV) line that is inserted into a peripheral vein in your arm. It stays in for the length of time you will be receiving chemo – which in my case will be approximately 16 weeks. A Port (or Portacath®) is a type of central line that, like a PICC, has an intravenous line that goes to a major vessel near the heart. It is inserted via surgical procedure and is implanted underneath your skin near your heart. These are typically used for longer term patients than me, so it seems I may be sporting a PICC line as part of my summer fashion. The verdict is still out though, and I need to make my mind up quickly, as it does require scheduling a minor surgery to have it implanted. It will be interesting to see how many scars and tattoos I will have on my body by the end of this process.

In addition to the Bone Scan and CAT scans, which were part of the introductory course, month two brings a MUGA scan (MUltiple Gated Acquisition scan). This scan creates video images of the ventricles (lower chambers of the heart) to ensure they are pumping blood properly. During this scan you are injected with yet more radioactive materials, which make it easier to see how the blood is flowing through your veins as you lie on a cold table in a sterile room. This one awaits me in a couple of days, and yes, my Lorazepam is ready ;-).

The entire C path can be very de-humanizing really and very daunting if you let it. Having (what can be gender-defining) parts of your body removed, then losing every hair on your body….hmmm. It can be very challenging just figuring out how to dress to go out in public! Independence during all of this may not, and most likely will not be, an option. So the bottom line is: sit back, enjoy being helped, pampered, spoiled and live (not just get through) each day at a time! Make no expectations – just have gratitude for all of the wonderful things around you :-). Thus, my Gratitude Journal continues to fill.

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Where’s Waldo?

The Book? Look Good, Feed Better Program? Breast Navigator? Waldo?

The Book? Look Good, Feed Better Program? Breast Navigator? Waldo?

My double mastectomy surgery appears to have been ‘a success’ and as many of you know, I was sent on my merry way home just a few short hours after the surgery, drugs in hand for pain. (They don’t tell you that you probably won’t sleep or poop much if/when you take them though!). Needless to say I think I only took them for 2 days, as what I felt was more discomfort than actual pain – depending what I try to do though.

Flashing my clown shoes!

Flashing my clown shoes!

I’ve had my handy ‘ammo’ vest (post-surgical camisole) of protection to wear, which has two pockets for the drain pots (I dubbed them the hand grenades), while protecting the bandages and drain tubes. It has been truly awesome! When both ‘grenades’ were in, they clearly looked like clown shoes, lol!! Only one remains still and looking forward to its removal. The backs of my arms and armpits are somewhat numb still due to nerve damage, which I understand will dissipate over time. It has improved immensely already within 15 days. All bandages have now been removed :-), going about town as needed, accepting numerous visitors, eating well and trying my best to gain a couple of pounds back! There are still a few things I’ve been trying to figure out though, as I follow this new path of mine.

Approximately ten days post-surgery, I began inquiring as to whether I should be doing any stretching or exercises in order to increase movement.  “Tell her to read the book!” my girlfriend (Director of Surgical Services at the hospital) said to my sister, Nurse Brenda, who quickly relayed the instruction via text message. “What book?” I searched all my stashes, piles and brown envelopes that I had received over the past month – nothing. I asked each VON nurse (Victoria Order of Nurses which supplies home care) who came to my home every other day to check drains, change/remove bandages, etc. She knew nothing about any particular exercises I should be doing yet. Hmmm. I searched online and found a few helpful ones.

Meanwhile, two girlfriends, who have gone before me on this path, had also shared info about  a Look Good, Feel Better program – a two-hour presentation where they teach you how to manage your rapidly changing looks. I think I might need this too! Attendees learn how to use makeup to overcome missing eyebrows and eyelashes; how to manage hair loss and choose a wig or other head cover; how to care for dry skin and nails during treatments; how to avoid germs and bacteria while your immune system is hammered down; and finally, how to care for your teeth and potential mouth sores.  Clearly I should try to attend this class prior to the time when I may be having to take a sick bag with me and in dire need this information. However, why had no one at the hospital mentioned this to me yet?

Lastly though, I found myself still awaiting contact from my Breast Navigator, as I truly was anxiously awaiting the time when this mystery person would appear, so that I could gain an understanding of what exactly their role would be in this new, breast-less life of mine. Two weeks later, still no Breast Navigator? Perhaps they would be introduced when I go in to begin treatments. I continued to ponder as to why no one had yet mentioned my Breast Navigator – not once.

Finally, feeling like I was somewhat in the dark after two full weeks,  I decided to be proactive and called the Cancer Care Clinic (CCC) – the place that is supposed to be THE centre of it all. The CCC organizes your visits with your Oncologist, Radiation Oncologist, chemo and radiation visits, schedules necessary blood work and generally ensures your C file flows along the information highway without any major traffic jams.  The CCC is located within the hospital and is the place you call when you have ANY questions as a fully-enrolled member of BC College. Surely, I hoped, they would know who will be: providing me with The Book; scheduling my attendance at the Look Good Feel Better Program; informing me of who my Breast Navigator is and approximately when they would be contacting me.

“Exercise Book?” they asked. “We depend on the surgeons providing those to patients. I can leave one in an envelope at the front desk for you to pick up.”

Great! Just have to get over there to get it now :-).

“The Look Good Feel Better Program? I’ll have someone call you about that”, they assured.

Finally the real biggie:“Breast Navigator”? they asked. “No. We don’t have one of those here, although we would like to and are working on it.”

Really? How sad, I thought :-(. All that mystery around someone who did not actually exist.

Yesterday morning, the VON came as scheduled. Low and behold she was an experienced VON and knew all the ropes. I told her how disappointed I was to hear that there were indeed, no Breast Navigators in Peterborough yet. However, she instantly replied “Yes there is … and here is her card! Go ahead, call her now!” And I did just that. The telephone number lead me to the switchboard operator at the hospital. “No, I’m sorry, we have no one here by that name”“A Breast Navigator? No, I’m afraid we have no one listed here under that profession either”. I visually scanned the business card I had been handed and asked for the Breast Assessment Centre. Bingo! A friendly voice answered the phone and when I asked if she knew about a Breast Navigator, her musical reply was “yes, of course we have a Breast Navigator and she is right here – would you like to speak with her?” YES! Mystery solved – just a couple of weeks too late. I was told that most of her role took part from the initial diagnosis to preparing for surgery. Post-surgery wasn’t something she was very experienced with, but they are working on putting an envelope of information together for post-surgery.  Ughh…really?

While the Breast Navigator has been there for approximately five years, she is clearly kept well-hidden within the Breast Assessment Centre. Only those who have specific doctors get referred to her. The doctors I’ve had thus far do not typically know about – or refer her services. Nurse Brenda, just happened to call me directly after this disheartening conversation, and I told her what I had learned. Kindred sister that she is, off she marched to find Ms. Breast Navigator and investigate. Armed with information, plenty of business cards and a lovely new stack of information for me to read, Nurse Brenda promptly arranged a meeting with her manager to spread the news of the ‘newly discovered’ Breast Navigator amongst their ranks at PRHC. Mission accomplished! Those BC members who follow my path will hopefully not have to piece the puzzle together on their own. I now have The Book in hand, a scheduled session with the Look Good Feel Better Program, and a Breast Navigator for any further questions! Happy girl :-).


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