Wednesday, June 27, 2012


Between my diagnosis and the end of treatment, there was certainly more time spent thinking about cancer than thinking about anything else. Things have changed, thankfully. However, I do still think about cancer – a lot. I mean how can I not? I’m missing a body part, I have a doctor’s appointment almost once a week (oncologist, oncology surgeon, family doctor, plastic surgeon, physiotherapist, and so on) and with my continual fear of recurrence, I will never ‘forget’ about cancer.

It’s nice to not wake up thinking about cancer like I was last year but within 2 minutes of opening my eyes, it crosses my mind. I wake up many times throughout the night because my expander feels like it’s moving or I catch a glimpse of myself in the mirror and notice the significant difference between Lefty and Righty (and let’s not omit the fact that my stomach now sticks out farther than my boobs), and the fatigue – my God, the fatigue. The other day, I woke up at 6:30am, had a cup of coffee then about a half an hour later, I went right back to sleep for another two hours. I could be wrong but I don’t think that’s normal – isn't coffee supposed to keep you awake?

I still very much feel like I am in the thick of things. It’s true that I am not in treatment and the only physical remnants of surgery are my scars but mentally, mentally it seems to be greater than ever. I feel like if I don’t tell someone that I’ve just met that I had cancer last year, that I am keeping something from them or even lying to them. Does that make sense? It’s like it’s such a big part of me that I feel like my opening line should be ‘Hi, my name is Katie, I’m 27, and I had cancer.’ Quite honestly, I think sometimes I just want to talk about cancer so I can share some of the thoughts that I have going on in my head. They are not new thoughts but sharing the same thoughts with new people can sometimes provide relief. Again, does any of this make sense?

My beautiful hair is a constant reminder as well. It continues to grow out instead of down, and it is so curly that it’s like it’s growing towards my head instead of towards my shoulders because the curls are curling into themselves. About two weeks before chemo started, my mom gave me a cute hair cut (taking off 12 inches so I could donate it) and I felt good about being able to give my long, healthy, uncoloured, blond hair to someone who needed it. Then, when I shaved it, I felt like a warrior, and let’s be honest; doesn't every girl wonder what it’s like to shave her head? I am grateful to have hair again but at least when I was bald, I felt like I was wearing a badge of honour and people were aware that I was going through chemo. Now it looks like I just cut my hair like this! I actually had a girl say to me today ‘do you always keep your hair short?’ I wanted to break down right there in front of her but I just said ‘No, it’s growing back from chemo.’ Why is our hair so important to us? And for all of you who say or have ever said ‘it’s only hair’ to a cancer patient, please stop saying that and feel free to shave your own head.

I have said many times that so many people (including me pre-cancer) assume that once treatment is over, cancer is over and I have really been trying to shout from every mountain top, that that’s not the case. I know that no one can prepare you for the everlasting emotional side of cancer, and regardless of how many people read this blog who have never had cancer, if any of them are ever diagnosed, they too will be ill-prepared for cancer’s grasp post-disease.

I wonder what my friends and family think when I talk about cancer or when I bitch about mastectomy bras or mastectomy bathing suits (something I am going to brave this summer). I often wonder what they are thinking while I am talking – my assumption is that it’s something along the lines of ‘Aren’t you over this yet?’ or ‘Have you not gotten used to having to deal with one breast? It has been over a year?’ Many times I don’t want to burden them with my fears (especially of recurrence) because I don’t want to worry them and for some reason I think talking about my cancer fears makes me look weak because for the past year, I have been told how strong I am and I feel like that’s something that I need to live up to.

I wonder what my friends think in terms of recurrence too. Do they wonder if it’s going to come back? Or do they think it’s over and that I will be enjoying lawn bowling with them in 60 years along with our arthritis ridden hips and our double (or triple) chins? I think many of them believe that I have put in my time with cancer and that I will never have to experience it again. I don’t know what I would have thought if roles would have been reversed. I think my fear of recurrence stems from an abnormal amount of fear and a realistic awareness of the facts while I think their approach stems from blissful ignorance and genuine hope. I think a second diagnosis would be worse because although the first time is full of unknowns and waiting – the second time, you know exactly what lies ahead of you and that’s horrifying.

As I was going over the topics that I wanted to write about this week, nothing in particular stood out. I tried going over the past couple of weeks to see if anything stood out but lately I haven’t felt any particular guilt, or fear or gratefulness so I thought I would write about the continual battle with cancer even after you've been deemed ‘in remission’ or ‘cancer-free’ or ‘NED’ (No Evidence of Disease). If only there was a cure for cancer of the mind.

Wednesday, June 20, 2012

Angel Gabrielle

I know that when I was diagnosed with cancer, my entire world was diagnosed at the same time. I know that my friends and family felt so helpless because they had no control over stopping the cancer, over helping me recover faster or over preventing it from ever coming back. I don't think I understood what 'helplessness' really meant until I went through a cancer diagnosis and watched so many around me watch as I experienced this awful disease without being able to stop it. I know that no one can say or do anything to relieve my grief and pain; I am the only one who can navigate myself through this experience.

Since my diagnosis, I have had friends and family who have experienced hardships in their lives and this has resulted in my own helplessness. Cancer has made me a more sympathetic person because I can safely say I know what it's like to experience hard times. Although what some of my friends and family have experienced is not cancer, I still feel like I can better understand their pain and loss because of my experience with pain and loss. I understand, on a different level, what it means to go through a tough time and no matter how many wonderful experiences you have in your life, the pain, whatever the cause, doesn't go away.

I have learned that many times, someone who is experiencing pain needs a shoulder to cry on, someone who will listen, and most importantly, he or she needs to be assured that no matter how long it's been since the pain started, you will always have them close to your heart. I sometimes feel like people look at me and think 'why does she still talk about cancer - it's over' and although treatment is over, cancer is not. It's so important that we continue to be there for the ones we love to ensure that they know we will always be there to listen no matter how trivial they feel their issues are.

Many times, I get emails or texts from friends saying 'my friend was just diagnosed with cancer - how can I help? What did someone do for you that you really appreciated?'. I have been surrounded by such incredible people and am very lucky to have my family, Keith and my in-laws, Julie, Liz and Michelle T., because they were all incredible during my diagnosis and during treatment. I honestly could write a book about the incredible things that those close to me did but I am going to focus on my mom for a little bit because she just seemed to know what to do.

From the time I was little, my mom has been my hero. I remember in kindergarten when my teacher was telling me to make a small 'k' (I did not understand that she meant lower case) and my 'k' was so small that you could barely see it, my mom sat down beside me and walked me through the difference between capital and lower case letters. I remember her explaining what it meant to get my period and without making it a scary thing, she prepared me so when it happened, I knew what to do. I remember when my mom surprised me with Backstreet Boys tickets because she knew how important they were to me. I remember her picking me up from a field party after I assured her twenty times over that yes, I had a ride home. I remember her moving me into my first apartment with two of my best friends and although her help was immense, I found her in a puddle of her own tears after I left her alone with the Dixie Chick's Travellin' Soldier. About 7 years ago my mom and I started going on a road trips for my birthday every year. I don't need anymore 'stuff', and my birthday gift is the memories with her. I still remember, in first year university, after getting off the phone with her, thinking 'Huh, she's not only my mom anymore - she's one of my best friends.' Needless to say, I have one of those moms that people wish they had.

On the Tuesday before my diagnosis, I called my mom and said 'I'm getting my results from the biopsy on Friday, I'm sure it's nothing but Keith can't get the day off work and if it is something, I don't want to be alone. I totally understand if you don't want to make the four hour drive, especially because it probably is nothing...'. But without hesitation, my mom said she'd be there. She was in the doctor's office when my GP said 'It's not good.' She witnessed my first cancer tear drop, she heard my phone calls to my dad, and my brothers and to Keith, and she was my first cancer hug.

Because she lives four hours away, it was tough, on both of us, but she was consistently 'there'. A week after my diagnosis, she transferred some money into my bank account and when I called her to ask her 'why', she said 'You're not allowed to buy groceries with this money and it can't go to bills either - this money is to buy a purse, an amazing purse, a purse that you otherwise couldn't afford - a cancer purse.' So, two of my best girlfriends came up that weekend and we went to Nine West and bought two beautiful, bright, summer, cancer purses.

A week post-surgery, when I was still bandaged up, my mom brought me a shower bench and washed my hair for the first time since surgery. She washed my back and my hair when I could barely raise my right arm. I think it was during that same trip that when I woke up in the morning, and walked out to the kitchen (all stiff and sore), she was on her hands and knees cleaning the floor. She knew it would be months before I would get around to it so she did it for me.

Because during chemo, your immune system is essentially non-existent, pedicures are not allowed because of the fear of infection. I had had maybe two pedicures in my life but last summer I felt robbed of not being able to have one. Well, my mom didn't hesitate and she soaked and scrubbed my feet and clipped and painted my toes, on a number of occasions, just so I could have painted toes like everyone else without having to exhaust myself trying to scrub and paint my own toes. Trying to fold laundry was exhausting enough, I can't imagine what a pedicure would have done to me (let's be honest, I just wouldn't have done it).

At the same time, meal preparation took a lot out of me too especially when my taste buds seemed to change by the minute during chemo. Mom would make huge quantities of spaghetti sauce that we could freeze and while she was here, she would make (or run out and get) whatever I would request. My mom found a way to focus on 'stuff' that she was able to do and that would help us out at the same time and I can't thank her enough for that.

I mean, I could continue on with the amazing things that she has done for me (She created a Team Katie cookbook with a collection of recipes from everyone from this year's Relay for Life Team Katie, the number of times that she has driven four hours for a doctor's appointment, for a chemo treatment, or to relieve Keith of his 'Katie Watch' duties is amazing) but I just wanted to mention a few things that she's done for me that any one could do for someone else going through cancer.

My mom knew what to do for me without ever being asked. She considered the things that I couldn't do for myself and did them for me. She stepped in to make my life a little easier even though she was going through my diagnosis too, just in a different way. If you have a friend who is going through cancer or even a hard time, consider what has changed in his or her life and try to fill a bit of that void. Whether it's purses, pedicures or spaghetti - I know how helpless it can feel to be a caregiver or a supporter and doing the small things are what makes the difference.

Here's to you mom, Gabrielle, for being you.

Thursday, June 7, 2012

Strapless Bras, Chemo Brain and Fertility

As 1 year post-diagnosis turns into 1 year and 3 months post-diagnosis, I still can't get over how many anniversaries (or as some call them cancersaries or cancerversaries) I have. Every time a surgery date or 'first' goes by (first expander injection, first PICC line, first treatment, etc.) I reflect on what I was doing on the same day in 2011. The same can be said for this blog. I started writing a year ago today and posted by first blog a year ago tomorrow.

The amazing thing about tomorrow is that it's my aunt's birthday. My aunt died of pancreatic cancer when I was 15 years old; it was safe to say that she was the closest person to me who had ever had cancer and then who had ever died of cancer. When I was told that I had cancer, I thought of her within 2 minutes of the words leaving my doctor's mouth. I finally felt like I understood a fraction of what she felt when she was told the news. As the year progressed, I started realizing that I could have never understood what she went through until I went through it myself. I kind of treat this blog like a tribute to her in a way.

Tomorrow is also very important because it is the Relay for Life in my home town. Last year, a friend of mine contacted me and said 'I just entered Team Katie into the Relay for Life' and in about 2 months, they raised over $10000. I didn't join the team because I had just had my first treatment and I wasn't sure how I was going to feel. This year, I am on the team and as of last night, we hit our $10000 goal again this year. I can't tell you how touched I am to be surrounded by so many incredible people. So all things considered, tomorrow is a very special day.

Now, I never considered myself a writer and I totally underestimated how cathartic and how therapeutic writing is. When I was asked if I would consider writing about my 'journey' through treatment, I thought 'Yeah, I can do this - I'm an open person and people might be able to relate to me.' Never did I think I would get so much out of it. I think because I know other people will be reading what I write, I know that it needs to make sense. I know that I need to paint a clear picture of how I'm feeling so that others can understand the thoughts that I'm trying to convey. And because of that, I think I work through some of my feelings that I didn't even know I had. Because I have to sort out my feelings to then put them into words almost allows me to acknowledge my emotions in a clearer fashion and then from there I can deal with them and move past them. Does any of this make sense?

My point is, I had never considered writing before I was asked to do it. I totally underestimated what it could do for me, the connections that I would make, the validation from others that it has provided me and the feelings and emotions that it has allowed me to process in a whole new light. If you get the chance to start a blog or even write in a personal journal, I so encourage you to do it.

Sometimes, when I write, it's to convey emotions that I am feeling and sometimes it's to retell a story of a great doctor that I've had or frustrations with insurance companies, etc. Today, I want to share some information about three totally different topics that have to do with (breast) cancer that I don't think a lot of people know about.

First, although this may seem minor to some of you, I find it very disheartening. Keith and I are going to a wedding next weekend and I found a dress that requires a strapless bra - well it could be pulled off with a normal bra but strapless would be better. I went to a mastectomy bra boutique the other day and asked about a strapless bra and she told me that there is really only one 'good' one on the market and it fits awfully and in order to fit into a 36, you need to be a 30. That's it??? That's my only option? So guess what, I'm wearing a bra with straps. I think sometimes we forget how limiting it can be when we have special needs (like requiring different bras because we only have 1-1.5 breasts). I think of my other girlfriends who get to go to any bra shop in the mall and buy the 2 bras for $50 when I have to go to a specialty store, have limited options, have no strapless bra options and pay $90 for one bra.

Secondly, recently, I read a study that said chemo brain can last up to 20 years post chemo treatment for breast cancer. PERFECT!!! So, chemo brain is something you experience during and post treatment that affects your thought process. The way I like to describe it is - you know how one neuron in your brain fires a thought through the synapse to another neuron (I'm basing this on first year psychology about 9 years ago so I may have this a little off)? Well, in the case of chemo brain, it's like the sending neuron fires but the thought never lands at the receiving neuron and it gets lost in your brain somewhere. I have literally stopped mid-sentence because I have TOTALLY forgotten what I was talking about. I know we all do this, but I mean, I go totally blank, nothing is firing up there while I'm experiencing chemo brain. The other day as work, I needed to write a cheque to someone named Britney (and her last name started with M), I wrote it to Brittany Murphy (the actor) just because my brain doesn't work anymore.

Your memory is also affected by chemo brain as well. I went to order my prescriptions the other day and they told me I was too early by a couple of weeks. Too early? I'm going to run out of them soon. Well, I guess I had called them in, picked them up and put them in my pill box already. Don't remember that!! And to think this could last another 20 years!!!

Finally, I want to discuss fertility. Keith and I went and saw a fertility doctor prior to starting chemo and learned about our options. We found out the cost was going to be thousands of dollars but because I was a cancer patient, we would only have to pay about 20% of the total cost. That was relieving but we still decided to avoid more hormones, more injections, and more procedures and take our chances. I then found out that if you decide to try fertility treatments AFTER chemo, there are no programs set up to help pay for these costly procedures because you are post-chemo. Huh?? So because I wanted to get the cancer out of me sooner, and not postpone treatment, I can't get any financial aid? I realize that there are steps being taken to change this but it just doesn't seem right. Doesn't it almost encourage you to go through fertility treatments before chemo (even if you are pumping hormones into your body while there still could be hormone receptive cancer cells AND at the same time, you would be pushing off treatment)? The ironic thing is, I was never told that if I didn't do fertility treatments prior to chemo, nothing would be covered post-chemo. I'm still glad we made the decision that we did but like so many other issues in breast cancer, it would be nice to know the facts before it's too late.

Like everything else, how do you ask the right questions when you don't know what questions to ask?