My Eggplant Expander

Oh breast reconstruction, how you have plagued me! Ok, maybe that was a little dramatic but it doesn't mean it's not true. Many times I have been asked about the reconstruction choices that I have made and how the process works so I thought I would write about it to explain my experience with reconstruction. I also want to say that I don't know anything other than the option that I chose and for some women, they are quite happy with not having reconstruction- an option that works for some women but it wasn't the right choice for me.

So, I was told that I had cancer by my family doctor (which really isn't fair considering that when I asked a question she couldn't provide an answer [to no fault of her own]). Five days later, I saw my oncology surgeon and she explained the difference between a lumpectomy and a mastectomy but I left that appointment still not understanding anything about reconstruction although she did say that she would set up an appointment with a plastic surgeon to discuss reconstruction. A week later (so twelve days after I found out that I had cancer), I met with my plastic surgeon and I had five days (before my mastectomy surgery) to decide what I wanted to do. In reality, 13 days before I met with a plastic surgeon to decided what kind of breasts I wanted for the rest of my life, I didn't even know I had cancer and now I only had five days to decide - it was an absurd process.

To be honest, the surgeon told me his recommendation and I took it. I regret not doing more research mind you I didn't really have the time and having no concept of how quickly cancer grows or spreads, the thought of getting the cancer out of me was my focus, no matter how mutilated or deformed I looked. I was also told that a nipple sparing procedure was not possible because research showed (insert stat here...) but in reality, there are surgeons who do perform nipple sparing procedures, I just didn't have one of those surgeons. Do I ever miss my nipple.

So, the day of the surgery, I had my right breast removed and at the same time, I had an expander inserted (I refer to it as one stop shopping). Apparently, having a mastectomy and an expander put in during the same surgery is not common practice so I consider myself lucky that I didn't need a separate surgery for the expander. Because my breasts were far from perky, my plastic surgeon suggested that I get a reduction on my left side to try to even them out. It seemed like a good idea at the time.

I woke up from surgery totally bandaged up and for about a week, I could not see anything underneath my bandages (which I was totally fine with). Once the bandages came off those, I can safely say that I was not prepared for what was underneath. My left side was so incredibly small (I had size 'e' breasts before and I asked for 'd' but woke up to a small 'c') and I had no idea that I would never get the sensation back in my reduced side either. If I had known any of this information, I would have seriously reconsidered my decisions.

My right side was flat and as I have written about many times, I struggled being able to accept that my breast was gone. Instead of accepting it, for weeks Keith got me dressed and cleaned my wounds (while I kept my eyes closed). I was petrified of my first expansion but soon learned that because I had lost so much sensation, I could barely feel anything (although I did still take sedatives and used an Emla patch). I had a total of seven expansions and because of my fear of needles, I asked that he double up (so rather than having the usual 50cc-60cc per injection, I was getting 100cc-120cc per injection to limit the number of needles that I needed). It caused a lot of pain doing it this way but the anxiety that my needle phobia puts me through is so crippling that it was worth it.

As I got more and more expansions, I assumed that the expander would start looking like a breast but instead it continued to look like an eggplant (thank you AnneMarie) was growing under my skin. And of course with no nipple, it looked like there was a lump in the place where my breast used to be, but in no way was this a breast.

As time moved on, the expander seemed to 'deflate' but what I think actually happened was that it slipped out of place and was now somewhat 'pooling' at the bottom of my 'breast' (and I use that word strictly for location not for description). While going to different doctor's appointments, I had four different doctors tell me that I should make an appointment with my plastic surgeon because my expander didn't look 'normal'. So, I made an appointment with him and he said, word for word, 'It should be ok.' I don't know about you, but that's not an appropriate response for me. If I've had to experience the bull shit that is breast cancer, I better end up with the best damn real looking boobs that are humanly possible and not something that 'should be ok.'

At the time of making decisions about what my breasts were going to look like, I was told that they wouldn't be symmetrical because one was a natural breast and one was a 'fake' breast but again at the time, I didn't care - just get this cancer out of me. Because doctors don't like touching healthy breast tissue and therefore the idea of getting two implants was shot down, I was prepared for my unsymmetrical set however, I expected them to look like boobs and not like vegetables. But now, now I care. Now that the cancer has been cut out of me, there has got to be something better than what I'm left with. I can't go from having 'e' breasts my entire life to then have a small 'c' and an eggplant. I am not ok with this. And because I've waited this long for my implant, what's another few months - I've decided to get a second opinion.

I know as much about reconstruction as I do about the Buckingham Palace, or building a house, or raising chickens, (that would be nothing at all) so why not talk to another expert who can maybe shed some light on breast reconstruction and give me some guidance. I am currently, I am on a waiting list for a surgeon who I have only heard amazing things about and I am hoping that she will be able to give me my breasts back, even though I am aware that nothing will ever replace my original pair, there has got to be something better than this.

Talkin' Breast Cancer with an Old Lady

Because of my age, I have been given many opportunities to speak about my experience as a 26 year old cancer patient and the most recent experience allowed me to spread my own awareness to young girls. I was asked to speak to a group of Girl Guides between the ages of 15 and 18 and it was quite honestly an amazing experience.

October is a busy month for breast cancer organizations and many times survivors because it's Breast Cancer Awareness Month. It means different things to different people. The blogging world is lit up with 'pink washing' and you hear a lot about the pink ribbon, consumerism, and how corporations take advantage of this month. I have been told by a number of people that 'the public is aware, now we need a cure' or 'why do we focus on awareness when prevention is what we need?' Although I agree that we need a cure, that we should focus on prevention, and that we should use the pink ribbon for good, I don't think we are all aware. Well, and maybe my awareness means something different than other's awareness.

Before I had breast cancer, I had seen the pink ribbon, knew that it represented breast cancer and knew that if someone was wearing it that they were touched by breast cancer in some way. Does that make me aware? I don't think so. I had zero awareness of what breast cancer is or more importantly that it could happen to me. I didn't know about the emotional effects, about the process, about the pain, about survivorship, the required support, where my donations went - I knew none of it.

I get a little frustrated during breast cancer awareness because I, among other young breast cancer patients/survivors are forgotten about again. The ads target grandmothers, women with grown children, women in menopause and they miss us youngins. It is true that 80% of all breast cancer diagnoses are in the 50+ age group so I understand why so much of this month is devoted to our aunts, mothers and grandmothers but if anything, that group is more aware of breast cancer than anyone. Aren't women in their 20s, 30s and 40s a missed demographic? Shouldn't we (daughters, nieces, sisters, and granddaughter) be the ones that are targeted by awareness?

When I was asked to speak to the Girl Guides, I was pretty excited about it. During the weeks leading up to the engagement, I kept thinking, 'these girls must be really looking forward to this night (<---- pure sarcasm). How excited would I be at 15 years old to hear an old lady talk about breast cancer? Cancer is the most depressing topic ever and on top of it, we have to discuss our breast?' I tried to keep these thoughts in mind while I was preparing what I was going to say to them. I wanted them to feel comfortable with me and ask any question that they could think of. In my own experience, primarily with my Aunt Sandra who died of pancreatic cancer when I was 15, I didn't ask any of my own questions because I didn't want to upset anyone. I didn't know what cancer was, I didn't understand how having cancer made someone so sick and could kill them, I didn't know how she got it, I knew very little but didn't want to bring it up so instead I said nothing. Because I was someone who had no personal connection to these girls, I wanted them to know that they could ask any question without me getting emotional, being sad, or saying that I would explain it to them when they were older and I wanted them to be aware that breast cancer doesn't only happen to 'old ladies' (although I'm sure that at 28, I am still 'old' in their minds).

I told them stories about cancer, chemo, things people say, supportive things that people had done for me, how cancer doesn't end when treatment does - primarily my story. I handed out pamphlets that explained how to examine your breasts and told them at their age, it was important to know what was normal so if anything abnormal showed up, they would be able to identify it, tell someone, and catch it early. I didn't want to scare them and I think I was able to balance awareness and education.

I had them laughing, tried to spare them the stories of my PICC lines, the constant nausea that comes with chemo, and the grossness of my post-surgery drain. Instead I tried to explain how I dealt with the loss of a breast, how people helped me when I was in need, and most importantly how I was so relieved in the end that I told someone when I found a lump even though I was so scared to find out what it was.

Every so often I would stop talking and ask if anyone had any questions and there was the odd one here and there but as time progressed, more hands went up and more girls were asking more questions. "How long did it take your hair to grow back", "You mentioned your periods went away, why?", "Can you have kids now", "Why was it hard to look down at your chest after surgery?" All I kept thinking was, "We've started a dialogue!" Together, we are talking about breast cancer and these girls feel safe. I don't know if I said the words 'period' and 'breast' in front of my peers when I was 15 but these girls are not only saying the words, but they are also asking questions. I loved it.

They thanked me at the end with a box of Girl Guide cookies (which are all gone - oops) and all I kept thinking was 'What I did was easy, what you girls did was the hard part.' I speak and write about cancer all the time, it's those girls that deserve a thank you. The fact that they welcomed me into their group, invited me to speak about breast cancer and then were interested enough to ask questions - it was amazing and it was awareness.

There are conflicting ideas about the right age to start breast cancer screening and whether the pink ribbon is a good representation of breast cancer anymore. No one can agree if we should focus more on prevention or on the cure. Some want more funds devoted to research while others want more support for survivorship programs. To be honest, I don't know what the right answer is but what's clear to me and what I've learned is that it's never too early to talk to young women (in high school, in college, pre-med, etc.) about breast cancer.

Thank you to the Girl Guides for letting me share my story and for having a conversation with an old lady.

Lost in Translation

I have had many conversations with other cancer survivors about the insensitive things that people say when you have cancer. There are some classics like 'it's only hair' (to which I started responding 'Oh great, so you're going to shave your head with me') to 'Well, just stay positive' (like it's as easy as breathing or blinking).

As time moved on and more and more people said the same things, I started realizing that no one was trying to be hurtful or insensitive, they just didn't know what to say. Another common thing was 'How are you feeling?' and I usually responded with 'fine' for a few reasons. First of all, most people don't want to hear about my diarrhea, my vomit, and the number of drugs that I'm on, most of which seem to be counteracting the side effects of the others. The other reason was that I found that sometimes people would almost try to compete with me. For example, when I said 'I am really tired' I was met with 'Uh, I know what you mean, my son is sick and I stayed up all night last night'????? Nope, you don't know what I mean. The anxiety of the disease, the chemicals of chemo, the restlessness that some of the drugs cause and the fatigue of being sick all mixed together keeps you in this zombie-like state where it's almost impossible to sleep regardless of if it's the only thing that you want to do.

I think one of my favourite examples, because it happened so much, was the number of times someone said 'You have breast cancer? My aunt had breast cancer and she died three years ago.' What in the hell am I supposed to do with that?' I wanted to say 'Well, I hope I don't die.' But, as time went on, I started to realize that people were trying to relate to me. They weren't really saying 'Gee, you might die', they were more likely saying 'I had an aunt who suffered through breast cancer and because of her pain I have an idea of what you're experiencing.' It definitely took a while to understand this but after almost pulling my hair out (wait, I guess I can't use this expressing in this instance...) from the things people said, I needed to cling to some explanation. I also tried to think of my life before cancer (maybe it's just me, but I feel like I didn't have a life without cancer, anyway) and I'm sure I said things like this because I had no concept of the psychological side of cancer.

Another favourite is 'God works in mysterious ways', I wanted to say 'That's easy for you to say, you've never had cancer.' I think people wanted to find a reason for my cancer so they would feel better about it themselves. If they are able to blame stress, or the environment, or food, or deodorant, or the microwave, or genetics, or plastic, or the birth control pill, or God, they can decide that my cancer was caused by one of these many factors and can try to avoid it. When I tell them that no oncologist can tell me why I got cancer, they get scared and realize that it can happen to them.

I think one of my favourite (and I use that word loosely) things someone said to me was all in the span of a red light. I was driving and my mom was in the passenger seat. We pulled up to someone that we knew and rolled down the window. The driver asked how I was doing and I told her that I was just about the start my fourth chemo the following week and that I was a little nervous about it. In my case, my chemo cocktail changed half way through (at my 4th treatment) and I had heard of people being allergic to this cocktail causing severe vomiting, etc. So anyway, the driver of the other car says 'Oh my friend Lois almost died from her fourth chemo.' My mouth dropped, the light turned green, and we both drove away. ALMOST DIED? Who says that??

The rest of the drive home, I was freaking out, 'almost died, almost DIED'. My mom tried to calm me down by coming up with excuses for the driver but she knew that what was said was so insensitive and just stupid. Again, I tried to find a reason that someone would say that and I know, deep down, that she was trying to relate. What she meant was 'I know you must be scared because Lois really struggled with her fourth treatment.'

Even now, I seem to get a lot of 'Ugh, you must be glad that's over.' And I know that people don't understand that cancer doesn't end when treatment does but it's still hard for me to have a conversation when that is the starting point. I try to calmly explain that I am still experiencing cancer even if it is out of my body. I know what they mean is 'I bet you're glad that your hair has grown back, aren't in chemo any more, and aren't experiencing the same physical side effects that you were a year ago' but it's still a struggle to hear someone say that to me.

My mom has compared it to being pregnant. She said that when her ankles were really swollen, people would come up to her and tell her horror stories about a friend of theirs who almost lost her baby when her ankles looked like that. Why do we do this to each other? As I said, I think we choose relations over mindfulness and rather than thinking of the consequences of our words, we try to let the other person know that we have a slight understanding of what they are going through. If I can give any advice, try to translate what people are saying to you into what they could possibly mean, I know it kept me sane as I went through treatment.