Thursday, January 26, 2012

Cancer Etiquette

Back in June, when I wrote my first blog entry, I remember pressing 'publish' and saying 'It's gone viral, it's gone viral' and Keith and I had a good laugh (well, actually, I think Keith was laughing at me instead of with me). I think I had this assumption that thousands of people would flock to my blog and hang off my every cancer word. Does the online world not realize what big of a deal (I think) I am? More realistically, now, I like to think that I am educating some individuals who have never had cancer while I am verbalizing and validating the thoughts of cancer patients/survivors. The following is about what different people have said to me and my interpretation of it since I was diagnosed with cancer.

From the day I was diagnosed, I have been, uh, surprised at some of the comments that people have made about me having cancer. I've had a friend ask if she could see my chest post-mastectomy, I've been asked if I lost all of my hair on my body, and I've had a family member refer to cancer as 'some problems' as in 'I heard you had some problems earlier this year' (obviously I don't see this person very often and my response was a snarky 'Yep, but I have since fixed them all'). Now, to be fair, this person is from a generation that when someone my age was diagnosed with cancer 'back in the day' the odds of survival were very slim so saying the word 'cancer' isn't something this person is used to.

It always amazed me what people said, especially when I was in the thick of things. Before my fourth chemo, I had someone tell me about one of her friends who almost died after a reaction to her fourth chemo treatment (the cocktail changes at chemo #4 for many breast cancer patients). If I wasn't scared before knowing this, I sure was afterwards. Also, I don't know how many people have told me about people they know who have died from cancer - I'm fully aware that it kills a lot of people. These are part of the 'wrong things to say'. And, the amount of times I heard 'it's only hair...', well my friend, are you going to shave yours in support of me, no, you're not so maybe it's a little more than 'just hair'.

In the beginning, there seemed to be a very obvious line between 'right things to say' and 'wrong things to say' but that line has since blurred. When someone says 'How are you feeling?' I often think 'If I have to answer that question one more time..." and actually, about a month ago, I avoided going to a party just to avoid that question - I knew it would be asked so many times. I can only make so many jokes about how my hair looks like a cocker spaniel from behind and having to talk about going back to work makes me tired of hearing myself talk. Now does that sound like something a complete bitch would say? Yep, sure does. How can you say that you are tired of people asking about your well being? Well, it falls under the same category as hearing 'just stay positive' 14 times a day, sometimes you just get questioned/cancered out. At the same time, when I am not asked how I am feeling I wonder if that person doesn't care about me - I had cancer, ya know!

I've talked about this many times, especially with my mom. She always says that there is no right thing to say to me and sometimes she's right (don't tell her I said that, ok?), sometimes there isn't a right thing to say to me. Some times I don't want to be the 'cancer girl' so I don't want to talk about how I'm feeling and other times I want my hardships to be acknowledged and want people to say 'how is the transition to your new normal going?'. In other words, it's a total guessing game anymore.

Some things are still black and white though, I can safely say some things are not appropriate. In December, my mom got a Christmas card that said something along the lines of 'I heard you had breast cancer - I hope you feel better.' First, yes, this person did think that it was my mom who had breast cancer (it's a safe assumption considering she is in the 'normal' age group and I am not but that wasn't even the part of card that is notable). The 'I hope you feel better' really rubbed me the wrong way. My mom saw nothing wrong with it. My mom asked me what the correct thing would have been to say and I didn't have a response. To me 'I hope you feel better' sounds like you were a little under the weather, not like you had just had a boob chopped off and then went through 6 rounds of chemo. My mom said she thought the comment was genuine and I still think it felt uninformed (is that the word I'm looking for?). This sparked a long 'conversation' about cancer etiquette between me and my mom.

What are the right and wrong things to say? I don't think I have an answer to that. I know that some people are offended by the term 'cancer survivor' (because it implies that those who are still living somehow fought harder than those who are not) while others have learned to hate the colour 'pink' and what it represents - yet I have no aversion to either. It's a tough thing to write about because I talk so much about the importance of creating and maintaining a cancer dialogue and yet I am writing about what not to say.

In one of my sociolinguistics classes, we learned about the difference between a descriptivist and a prescriptivist. In the case of linguistics, a descriptivist explains the way people talk whereas a prescriptivist explains the way we should talk (for example, we use 'less' instead of 'fewer' in many cases anymore - 'David had less cookies than John' a descriptivist would note the use of the word 'less', a prescriptivist would express the inappropriate use of the word 'less' and suggest the word 'fewer' as the appropriate substitution.) I unfortunately, am a self-proclaimed prescriptivist. I think there should a list of rules and those rules should be followed (I think this is why I like math so much). When applying this to cancer, I think the same should be said for speaking to cancer patients/survivors, there are some things that should not be said and list of others that should be.

Because the list would be infinite, I tried to make a list of rules to follow when speaking with someone who has or has had cancer. Is this list upsurd? Yes. Would I have found it unnecessary prior to having cancer? Yes. Do I think something like this should exist to prevent some of the ignorant things that people say to those who have cancer? Obviously.

This is a random list of 10 things to keep in mind, it's not a complete list, it may not even be accurate for some people but for me, I sometimes wished I could have given it to some people that I spoke to prior to having spoken with them.

1. Imagine yourself in that position - would you be offended by what your about to say?
2. Nothing is expected of you - don't speak just to fill the silence
3. Although I have cancer, cancer doesn't have me, feel free to talk to me about any thing other than cancer
4. Try to balance your curiousity with sensitivity
5. Sometimes when I'm venting, I just need to vent - I don't want you to fix my problems
6. Try to be supportive not sympathetic
7. Don't tell me about someone you know who has died from cancer
8. Invite me to do regular activity - I have cancer, I'm not dead
9. Approach the 'stay positive' subject lightly - you throw up for 3 days and then be positive afterwards
10. Think before you speak (may be this should be #1)

I wish I could have given this list to some people that I have encountered over the past 10 1/2 months as a guideline for what to say to me 'next time'. I wouldn't have thought that people needed a list to follow but based on my experience, people are either too nervous, too uninformed or too insensitive to know what not to say. This isn't coming from a place of anger but instead a place of past experience and a place from which I hope to help educate about cancer etiquette.

Thursday, January 19, 2012

Guilt Stricken

I always talk a lot about 'what I've learned' since I've had cancer. A lot of lessons have been about the way in which I should approach life, the importance of relationships, support, love, strength, and positivity. One thing I didn't expect to feel was guilt but it has been part and parcel during this journey.

Let me explain...

I certainly don't feel guilty for having cancer, but there's a certain amount of guilt that comes along with having cancer. I think about all the pain I have caused so many of my friend and so much of my family (obviously unintentionally) and although I know I didn't have control over having cancer, it was still because of me that more tears were cried by those close to me in 2011. Intentional or not, I feel guilty.

Not working is a major source of guilt. I look at all of the other people who go to work during treatment or a few weeks after surgery and wonder if I should have done the same. Personally, I don't think I could have done it, and I think the time off helped me heal both physically and emotionally but none the less, I have inconvenienced a number of people by being off and financially, Keith has been supporting us for the past 10 months (along with my Long Term Disability [about 45% of my wages] and money from friends and family). Having friends and family give you money is such a bizarre feeling. I felt guilty for taking the money and then even more guilty for spending the money. Any time I bought something outside of the 'essential list', guilt would creep up into my chest. As for work, I think some times people look at me thinking 'You look healthy, and you were healthy enough to (insert activity here). Shouldn't you head back to work soon?' I know some women who have worked all through treatment and it makes me feel guilty that I had the time off. All I have been told by other 'cancer friends' is 'Don't go back to work too early - take the time to heal so you can go back at 100%' and yet I've already set a date for myself to go back to work.

Guilt also rears its ugly head when speaking to someone who has had a later stage of cancer too. It's almost like when I say 'stage 2' or 'single mastectomy' it fads away in their 'stage 4' or 'double mastectomy'. It's a bazaar feeling that I may not be able to explain properly but I wonder why I came out of it with 'only' stage 2 and the loss of one breast. I have met so many women who have gone through over five surgeries, and who have been through chemo twice, and who have had cancer spread to other part of their bodies and I some times feel guilty that mine wasn't 'that bad'. I'm certainly not envious, but I feel guilty saying 'I'm cancer-free' when they may never be.

I think some times we hold different standards for others than we do ourselves, both higher and lower, depending on the situation, but in the case of cancer, I have held myself to a bit of a higher standard and I think guilt has a little something to do with that. For example, because I have been able to take almost a year off work, I shouldn't complain about recovery because at least I don't have to work through it. For example, because I have such a strong support system, I should be a little stronger because I have others there to pick up my slack when I'm not 100%. For example, because I knew after speaking to my oncologist that I would one day be cancer-free and others are not so lucky, I should be very grateful for what I have.

While I'm on the topic of guilt - there is a lot of guilt associated with the death of a loved one, 'I wish I had told her...', 'Why did I say...', 'She'll never know that...'. I'm not trying to be morbid, but when you're diagnosed with cancer, I think it's natural to think about death. You think about your funeral, who would come, what would people say? I think so often we say things after someone has died that we wish we would have told that person while he or she was still alive. Maybe to relieve that guilt, we could start telling people what they mean to us before they die. This may seem like an odd thing to say but have you told your mother/husband/sister/son what he or she means to you lately? Even if you think they know, some times it needs to be said and some times it's just nice to hear.

I have felt guilt from a very early age. I hold guilt for things that people don't even remember happening. Actually, the morning of my diagnosis, prior to knowing I had cancer, I was getting ready to get in the shower and asked my mom if she thought that having cancer would negate one particular guilt-filled moment in my life. Her response was something like 'Katie, don't say things like that.' Little did we know, I actually had cancer. I always thought that something like cancer would cancel out all the bad that I had done in my life but instead it's just another thing to deal with. Unfortunately, in life we cannot control our own Karma by erasing the effects of one decision with something like a cancer diagnosis. Instead, the 'bad stuff' stays in the 'bad stuff pile' regardless of what we're faced with.

My point is, I had enough guilt prior to cancer and it is just something that you don't hear about very often - 'Hi, I'm 26, have cancer, and feel pretty guilty about the whole thing.' Now, maybe this isn't a common feeling of other cancer patients, may be this is just my thing. I just wasn't prepared for Guilt. I knew Sadness and Anger would all be at the party and even their asshole friend Fear but I thought Guilt was staying at a cousin's villa in Spain until I was at least back at work. To those of you who have been the victim of guilt, know that you are not alone although I am not quite sure how to shake it or 'deal' with it (ignoring or hiding feelings is way easier than dealing with them - even though I'm sure it will all come back to bite me in the ass soon enough. If you ask Keith, I'm sure he would say that I deal with all of my issues, over and over and over again).

I want to leave you with a quote from a woman who used to be neighbours with my mom. She moved years and years ago but some time in the summer she dropped a card off at my mom's for me and inside was a generous gift because she had heard that I was sick. She sent me a Christmas card this year and inside this is what she wrote;

"Dear Katie,

I think of you often, your courage and inner strength.
Hope your life is on course more times than not.
(and then she wrote out a quote by Mary Anne Radmacher)
Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.' "

Mary S., thank you.

Thursday, January 12, 2012

Breast Reconstruction 101

At about 3:30 on Tuesday afternoon, I got a call from my plastic surgeon. The phone call went some thing like this;

Dr G.: Hi can I speak to Katherine, please?
Me: This is Katherine - Hi Doctor G (I had called earlier that morning to ask about something so I assumed he was just returning my call)
Dr G.: Hi Katherine, I have bad news. We have to cancel your surgery.
Me: Oh my God, they found something in my blood work - the cancer has spread.
Me: Why?
Dr G.: (this is NOT verbatim) Well, because your implant is a new kind of implant (cohesive gel), they ration them out to each doctor and I have used too many in the past months so I cannot get O.R. time again until May.
Me: MAY???

So, it's looking like I have to wait another 5 months to get righty back. To be honest, I was so relieved that the problem wasn't my blood work that I was almost grateful to hear about the rationing of boobies. It's annoying that I have to wait, and even more annoying that that blood work at my pre-op was all for nothing but life goes on. Just to explain the boob rationing thing - we all know about saline implants, and silicone implants, well this cohesive gel implant has like a gummy bear consistency and so if it were ever to rupture, it wouldn't leak into my body, it would just stay put until it could be removed. It is a fairly new approach to implants and they are apparently rationing them.

Originally, tonight I had intended on writing about reconstruction because I have alluded to my expander and the concept behind an 'implant in training' but haven't really given a break down of how it all works and regardless of my surgery being cancelled, I think I should still write about it because so many women are faced with the decision of whether to reconstruct or not. I'm hoping that this entry will both educate those who know nothing about breast reconstruction as well as help provide input to someone who is currently deciding on whether to go for it. I just want to say that there are other reconstruction options out there where your own tissue can be used from other parts of your body but I know very little about those options and they were never offered to me which is why I didn't include them.

So first, I think it's important to discuss some time lines

March 11: Diagnosed
March 16: Met with oncology surgeon - found out I was getting a mastectomy not a lumpectomy like originally planned (the chance of recurrence doubled with a lumpectomy at my age) and learned a bit about an expander (not the massive needle part)
March 23: Met with the plastic surgeon
March 28: Mastectomy and stage 1 of reconstruction

So, I had 5 days between the time I met the plastic surgeon and found out about reconstruction and my surgery. I had five days to decide whether I wanted to go through with the expansion process or if I just didn't want a breast any more. So, in his office, all over about 30 minutes, I decided to grow a breast back. If I changed my mind, I was to call him over the following 4 days to let him know. I think it may seem like an easy choice to make, however, as I have said, I have a massive phobia of needles and the expansion process involves a whole lot of gigantic needles.

This is how it was explained to me...

The oncology surgeon will remove the breast (including my nipple - I miss her greatly) and then the plastic surgeon will insert the expander (picture an implant that is vacuumed-packed with a little bit of saline in it) under my chest muscle. It must be inserted under the muscle because there is not room for a breast anymore so the expander will stretch the chest muscle and allow room for an implant to eventually be there.

So, when I woke up from surgery, I had no breast but the potential for one to grow. I want to point out that I know many women whose plastic surgeon's would not put in the expander at the same time as the mastectomy (I think because of potential damage from radiation) but I am very grateful that mine did. Anyway, he then explained that about once every three weeks, I would go into his office, and get a saline injection. He would take a magnet that had an attachment on it to find the port of the expander. He would put the magnet on my 'breast' and this little attachment would become erect when he was over top of the port. Knowing that he found the port, he would then mark it with a marker. He would then get 100ccs of saline and load his needle, insert it into the marked spot and through the port he would inject my expander. It would be cool if it wasn't so gross. To be honest, I couldn't feel it between my freezing patches that I used and the nerve endings that are all shot on my chest - it really was pretty simple.

To go back a little bit, after surgery, when I went in for my post-op, my oncology surgeon's nurse had asked if I had gone to see Dr.G yet and I told her that I was so scared of needles, that I had been avoiding calling him. I knew my breast wasn't going to grow back on it's own but crazier things have happened. Anyway, I finally found the nerve to call and luckily no one answered and I left a message. He called back about 2 hours later and said he could fit me in the next day. I started asking him questions about the procedure and he said how easy it was. I started to cry and told him I was a little afraid of needles and I swear the next thing out of his mouth was 'Oh, Katherine, I remember you now." Anyway, the day before my first expansion was easily the most nervous I have been since diagnosis - I wasn't as nervous about losing my breast or chemo or the millions of tests but the thought of a huge needle (I mistakenly saw it once and it is large), going into my chest, yuck! However, I wish I would have known how simple it actually was. If I had to get my other breast removed, the thought of the expander wouldn't freak me out at all. It's not pleasant but it certainly doesn't hurt.

The expander is not all that comfortable in the beginning and there were days were it was like I was paralyzed for a few seconds because my nerves were trying to figure out what this foreign object was in my body. Sleeping became a chore and the only comfortable position was on my back. On my left side, the expander felt like it was going to move and on my right side it felt like it was going to pop out. I'm a stomach sleeper so it took a while to get use to. For the record, it's not like it used to be pre-expander, but I am a confident stomach sleeper again.

So, he told me that I could have up to 12 expansions (poor Keith, eh? That 12 frantic Katies that he has to deal with) but because I hated needles so much, he upped the ccs from his normal amount (normally about 50-60ccs get injected each time) to 100ccs every time, because I would rather deal with the pain afterwards than the anxiety of getting more needles. For about two days after each expansion, I was a little tender, my chest was tight and the muscles in my back were knotted just because every thing is being pulled. It certainly didn't lay me up but you can certainly feel it.

So expansion finished in August I believe, and I was so glad that I decided to get it done. Although, the shape is a little weird. Because an implant is round in shape, you would assume that the expander would be too but because it is 'vacuum-packed' and you can't control where the saline settles after each injected, mine is currently oblong. I'm looking forward to having a somewhat round boob again. I could keep this expander in instead of getting an implant, there's no harm in that (some women do that to avoid another surgery), but it's just not all that aesthetically pleasing and it resembles a lump more than a breast - I want a breast again.

I had to wait for 3 months after treatment was over before I could go in for another surgery (to get my immune system back up to par) which is why we decided on January 12th. The surgery is simple, the O.R. was only booked for 60 minutes, and then recovery is about 4-6 weeks. They go over the same incisions as my mastectomy scar which is one scar side to side at the bottom of the breast and one up the middle to about where my nipple would have been.

The final step is getting a nipple back. There are a few approaches that can be used. They can do some sort of pinching technique that gives the look of a nipple but that isn't permanent (not sure how long it lasts - a few years I think) and you will always have one erect nipple. And the other option is to have a nipple tattooed on which is a weird concept but I have seen some of them and you would never know. It's pretty impressive.

I had a reduction on my left side as well so that I could have a bit of a matching pair but nothing compares to the real thing. I miss my boobs, my ladies, my tatas, and although my one nipple is back facing forward instead of facing the ground, I don't like only having one, I would like two again. I am lucky that I have had the opportunity to grow a breast back but it's just not the same. I think I was just under the impression that if I ever had breast cancer, I would get both breasts removed and then get a 'sweet rack' and yet, it's just not that simple - evidently.

To all of you contemplating to have reconstruction or not, there is no right answer. There is only what you decide. I decided to get reconstruction and I am really glad that I did, even though it wasn't pain free, I am on my way to having a breast again (even if I do have to wait 'til May).

Thursday, January 5, 2012

Little Miss New Boobs

I can't believe that it's January 5th and the holidays are over. What happened? Christmas was almost two weeks ago - where does the time go?

Christmas day was wonderful and seeing that it was my first one-breasted, post-diagnosis Christmas, I wasn't sure how it was going to go. My eyes filled with tears a number of times because in March I wasn't sure if I would see Christmas and here I was celebrating it just like everyone else. The magic of Christmas was alive and well considering that I have a 4 year old niece and a 6 year old nephew who made this Christmas the best one yet. Christmas Eve my nephew whispered in my ear, 'Dad's seen Santa before' and for the next 24 hours, my world was magical. It's incredible to see something like Christmas through the eyes of a 6 year old.

I got to see family over the holidays and some of my friends at home. As 2011 dwindled down to only a few days, I started getting really excited about 2012. Back in June, some of my friends entered 'Team Katie' into a national fundraising campaign, and the driving force behind 'Team Katie', or we'll call her The Captain (aka Kristi), got married on New Year's Eve and so we got to ring in the new year while celebrating a new marriage. I loved every minute of it, what a cool way to ring in the new year.

As we counted down, it was such a different feeling than any other year. Usually, as we count down, I think about what the next year will hold for me and this year I looked back at what 2011 held. Counting down went something like this: 10 - Holy crap I had cancer this year, 9- I don't have a right breast anymore, 8- chemo, never again, 7-my hair is back, 6- I think my periods are back, 5- Where did I put my drink? 4- 2012 Gotta lose weight, gotta lose weight, 3-I can officially say I had cancer last year, 2-I get to kiss this incredible man beside me and call him mine (I am talking about Keith and not some dark stranger I met at the wedding, just to be clear) 1- It's over - happy new year!

Keith and I kissed forever (not gross make-out kissing, just like one of those moments that you don't want to stop. It was like by kissing, we were celebrating the end of 2011 - no more tumours, or hospitals or chemo drugs). It was such a good feeling to say goodbye to 2011 and hello to 2012. I said many times in 2011 that I wish I could hit the fast forward button and land in 2012 and here we are.

I try not to make resolutions because I don't want to disappoint myself but I do have some plans. In 7 days, I have surgery. I am getting my expander out (the temporary implant that is acting as a deformed breast) and getting my big-girl implant put in. If you would have seen my boobs prior to surgery, it would have been safe to say I was the last one anyone thought would get a breast implants - interesting where life takes us isn't it? I had my pre-op for surgery yesterday and other than the blood test (where I cried myself into a panic attack and was sweating profusely [what else is new?]), it went well. I'm really not looking forward to the IV but I just keep trying to tell myself that in 9 days, I won't have to worry about it anymore.

I was telling Keith last night that I am not really all that nervous about this surgery. It's so much different than my last one. I am gaining a body part and not losing one this time, they are not cutting cancer out of my body but just repairing the aftermath of its effects, and the recovery shouldn't be anywhere near last time. I also told Keith that I don't think there has ever been a time in my life where I have been happier. Yes, not everything in my life is perfect, Lord knows the size of my ass is certainly far from it, but I am alive, I have incredible friends, a wonderful family and Keith and I (cornball alert) are seriously, annoyingly happy and I've never really felt like this before.

After surgery, I have a few things planned before I head back to work, which, assuming everything goes to plan, I am hoping to head back sometime in March - taking on a few hours a week to get myself back into the groove. Back in March, I thought this whole 'cancer thing' would be an inconvenience for 4 or 5 months and the thought of being off work for a year was unimaginable and here I am talking about going back to work a year later and I am pretty nervous about it. Will I be ready? Is it too soon?

The fatigue makes me a little nervous because it can be unpredictable but it's more the chemo brain or chemo fog. So, for those of you who don't know, chemo brain is something that happens during and after chemo therapy that can affect the mental processes of your brain. It is a real condition that affects a lot of cancer patients. In my case, I am doing ok but I have found my short term memory isn't all that great (I tried ordering a prescription the other day and when the tech said I was too early by about 2 weeks, I thought she had typed in the wrong information. I went home to find that I had already filled it and already had it in my medical cabinet. I have no recollection of ever filling it). Chemo brain doesn't allow you to think clearly and it can make things foggy. In the summer, during chemo, my dad was asking me a question and my response was supposed to be something like "Oh, I can look that up for you online" and what came out was something like "Why don't I buy you one"??????? Sometimes your brain just doesn't want to cooperate with you. It can be very frustrating and I have a job that requires a lot of multitasking so I fear that my offices will be covered in Post-Its because if I don't write it down, I don't remember it. Regardless of my fears, I am looking forward to getting into a routine again and making money, that will be a nice feeling.

Although going back to work is my goal for the spring, my goal for right now is to prepare myself for surgery and recovery and continue to stay on top.

For those of you who don't know Twitter (check me out at @lovlykatielumps), they have hashtags represented by a "#" and a hashtag represents the topic of your Tweet. So last night when I was tweeting about the Canada/Russia hockey game, I put #2012WJC (2012 World Junior Championship) and #IIHF (International Ice Hockey Federation) at the end of my Tweet. Today, for this blog post, I would like to add a hashtag (that I use on a regular basis on Twitter) #FUcancer.

For those of you going through cancer treatment right now, I know it's tough but it will get better, I promise. People said that to me and I sometimes wanted to tell them what I thought of their positive attitude, but it does get better. For those of you who have never gone through cancer yourselves, tell someone you know who has that you love them and you're proud of them because sometimes, it's easy for us to assume that once treatment is over that cancer is over and it's not. It's an every day battle.