Saturday, December 24, 2011

Merry Christmas Aunt Flo

Well, it's Christmas time, a time that seemed so far away back in March. I didn't know if I was going to see winter and here I am celebrating Christmas. You here the words 'you have cancer' and everything becomes about the present and the future somewhat fads away. I was more worried about losing a breast and preparing for my next chemo that things like Christmas seemed insignificant. How things have changed.

There's this weird feeling you get once you're told that you are cancer-free and for me it wasn't joy or excitement or even relief, instead it was like a 'proceed with caution' feeling. It's almost like I'm afraid that if I tell too many people that I am cancer-free that my body is going to make a liar out of me. However, it seems as though every time I do let my guard down and accept my cancer-free results, my body reacts in a positive way. I smile more, I laugh harder, and apparently, I get my period.

Anyone who knows me knows that fertility has been a huge focus of mine ever since I found out that chemo may have robbed me of the opportunity to have children, something that I have been planning on since I was a child myself. Once you go through chemo, it can do so much damage to your body/ovaries that it can make you infertile and they have no way to determine if your period will return or not; some women are permanently in menopause and other women get their periods back.

I have always wanted children but I think as women, there's an expectation or at least an assumption that when you want children, you are able to have them and unfortunately, I'm not sure how easy that will be for me. I have a few friends trying to get pregnant right now and sometimes I will get a text that says 'Ugh, I got my period' and I usually text back 'Ugh, I haven't gotten mine'. We both want children but in their case having a period means they aren't pregnant, in my situation, having a period is a good thing.

Anyway, I will come back to my period in a minute...

I have never felt better. Cancer is just not a part of my every day vocabulary anymore, I don't feel like I live at the hospital, my hair, eyelashes, and eyebrows will all be present at the dinner table with me on Christmas day, I have really gotten involved in helping other young women going through cancer, and Keith and I, well I think we all know how I feel about Keith; we are better than ever. And, wouldn't you know it, I got my period this week. It seems as though, when my heart smiles, my ovaries smile along with it. Having a period doesn't necessarily mean I am ovulating but it sure is one step closer.

Speaking of one step closer, I just got off the phone with my plastic surgeon's office and I have a date for my surgery, it's January 12th. It's my surgery to get my expander removed and my implant put in. I joke that I'm like Pinocchio and my next surgery date is the day that I become a 'real girl' because I will have completed my reconstruction. The first thing I think about is of course the blood test at my pre-op and the disgusting IV that I'll need but January 13th is only one day past the 12th and that day will be needle free. While I'm on the topic of doctors, I never heard from my surgeon about my mammogram and they said if you don't hear from us in 4 or 5 days, you're clear. That was Dec 7th, so yahoo.

But before I jump into January and talk about my next surgery, I want to talk about the 'why' of cancer. A number of different people have asked me why I got cancer. They want a reason, maybe it's so they have something to blame, or maybe they hope that I'm predisposed to something that they are not predisposed to so they feel better about their chances of not getting it but regardless, knowing 'why' has never really been a concern of mine. My tumour was estrogen receptor positive (in my case, I think it just means I am more of a woman) but we don't know why I have an excess of estrogen. I guess I wonder, why does anyone ever get cancer?

If I could go back somehow and not have cancer, I would in a heart beat, who wouldn't, right? But, there are a few things that I have taken away from having cancer that I couldn't have learned otherwise. I think I got cancer because I could handle it, even though I didn't think I would be able to, I did it and did it with my head held high. I think I got cancer because it tried to pick on someone who may have given the impression of being weak but ended up being so strong. I think I got cancer because I was able to teach from it and use my experience to help people better understand cancer who've never had it and help those who have, better cope with it. Finally, I think I got cancer so it could teach me a lesson or two about what's important in life, about making a difference in the way I impact other's lives and about true friendship and support.

During this time of the year, I always get a little emotional (thank you for passing that gene down to me, Mom) because it's a time for family, a time to be thankful and a time for presents (just kidding). Christmas has always been my favourite time of the year because everything is magical and in my family, it always has been about giving. This year I wasn't sure if Christmas was going to be taken away from me but thanks to the support of my family, old friends and new friends, a few strangers, doctors, nurses, medical advancements, treatments and maybe a little bit of my own strength, this Christmas really is going to be the best yet.

Merry Christmas to my family, my friends (both old and new), from 25 year survivors to the newly diagnosed, to caregivers, to doctors and nurses, to everyone at the CCTFA (especially Sherry and Chantal), to everyone whose job it is to emotionally support cancer patients and lastly to my Aunt Flo (thanks for visiting - don't be a stranger).

Thursday, December 15, 2011

The Game of Life

Last week, Keith and I played The Game of Life (based on the title, you thought I was going to get all philosophical on you and talk about cancer being my roommate again or compare having cancer to taking a wrong turn into a bad neighbourhood, didn't you?). I won all three times; I'm not going to lie, I'm pretty good at Life (get it?). Anyway, I managed to make it through each game with no cancer, at least one child, and more than $1.5 million at retirement. Here's hoping the latter two are what life has in store for me.

It was so nice to 'play' Life instead of live it. There is no room on the little female peg for any mastectomy scars and there's no square that you can land on that says 'Quit your job and go through chemo - you have cancer.' Thank God, otherwise that would be one hell of a depressing children's game.

Keith does not like board games but he does like 'Life'. The night after his three-round massacre, he asked what I wanted to do and I suggested playing 'Life' again. He declined my offer, not because he is a sore loser but because he was board gamed out. I would play that game every day if I could (actually, I thought about playing against my self the other day - it's a garuanteed win) because with the spin of a wheel, you can pop out twins, or win the lottery, or get paid $80000 as one of your paycheques.

Other than 'Life' the past couple of weeks have been great. Nothing really spectacular has happened and I think that's what makes it so great. Doctor's appointments have gone well, I am starting to feel really good, financially we are doing much better thanks to my insurance company revisiting my file and changing their decision, Christmas is almost here and you wouldn't know I had just been through chemo thanks to my hair growing back so quickly (although it does resemble a cockerspaniel from the back thanks to the 'chemo-curls' trying to make their presence known).

Obviously, my life wouldn't be my life without a little drama. I'm not going to lie, I have had a little stress over my upcoming test results. Last week, I had a mammogram on Wednesday. Once you've had cancer, you unfortunately become a bit of a cancer expert and you are able to throw around the medical jargon like a pro. As the tech was looking at my film, I asked if she saw any 'calcification'. I heard this word for the first time back in March, I didn't like it then and I don't like it now. In an older woman, this isn't a bad thing, it's kind of expected, but in someone my age, there shouldn't be a lot of it (there's also micro vs macrocalcification and the importance of its presence depends on the amount in your breast). Anyway, she said there was some but she didn't think it was anything to worry about.

For the past week, I've been waiting for my results and on Monday morning, my cell phone rang. I looked at the number, recognized it was one of my many doctor's offices and held my breath. I answered the phone and I heard "Can I speak to Katherine, please?" - Shit, shit, shit, they found something and now I have to go back in and potentially have another mastectomy. "This is Katherine" - wait, or can I be Denise or Samantha or Tess, today? No, no, I am who I am. "Hi, this is Dr...." Oh I know who it is and I know the drill, you're calling from Dr.ShittyTiming's office and you need to see me to discuss some test results. But then, the girl's voice on the other end of the phone said a different doctor's name than I was expecting, it was Dr.G's office calling. "Dr.G? Dr.G? how do I know that name? Oh right, it's my plastic surgeon's name." They were calling to tell me they had a cancellation and wondered if I wanted the date. Ahhhhhh! What a relief. I felt like throwing up and doing the can-can all within about 10 seconds of each other.

I can't book my next surgery (getting my implant put in and my expander taken out) until I know for sure that this lump in 'lefty' is nothing because if it is something, I will need an oncology surgeon as well as my plastic surgeon there at the same time, working their magic. I am to wait 4 to 5 days (today is day 5) and if I hear nothing then I am in the clear. Personally, I will feel better by Friday (a full 7 days, just in case their office is backed up).

Seriously, this cancer garbage never stops. It's a constant game of Symptom-Test-Wait-Result-Reaction. Well, honestly, it's more like Symptom-Wait-Appointment-Wait-Test-Wait-Result-Reaction. For those of you who have someone in your life who has dealt with cancer, give them a hug for me the next time you see them. I can promise you that every cancer patient has felt like this. The tests never stop, the appts never stop, and we all know that the worry NEVER stops.

I can worry all I want but it's not going to change the results and regardless of waiting for test results, as I said, I am doing very well. Honestly, I feel really good about the future, I have been lucky enough to get involved with some great organizations to help in any way I can, and I've finally taken over the driver's seat of my life and thrown cancer in the back seat (dammit, another analogy).

If you're on Twitter, say 'hello' @lovlykatielumps. I like to pretend like I know what I'm doing on Twitter but truthfully, be patient with me if you do decide to follow me.

Wednesday, December 7, 2011

Rerouting My Road Map of Life

Well, today is another doctor's appointment. Today is mammogram day.

On Friday, I found out that I do not have the breast cancer gene (yahoo). I wanted to get tested for the BRCA1/BRCA2 gene because they would monitor my ovaries more closely from now on and take a screening approach rather than a diagnostic one if I did have it. Not having it is good news. This news was followed by 'but you might have 'this' disease or 'that' disease." So, because I was only 26 when I was diagnosed, they are trying to find a reason for it. The odds of my cancer being based on environmental causes, my surroundings, hormones in the water I drink, etc. is less likely because the tumour developed in only 26 years rather than the average 50+ years.

They want to determine whether my genetics are working against me so we can improve the type and amount of screening that I get. So, for example, if I have one of the diseases that could explain breast cancer at 26, then I might have an increased chance of getting pancreatic cancer (these are just examples) so from now on, every time I have my yearly mammogram, I will also have an MRI to check on my pancreas and hopefully catch anything that's there in its early stages.

However, there are some diseases where cancer is radiation 'induced' meaning that with the more radiation I get (from MRIs, Mammograms, X-rays, etc.), the higher chance I have of developing one of THOSE cancers. So, really, it's a good thing to figure out if I have any of these gene-based cancers so we can either do more aggressive screening or instead, try to minimize the amount of screening but maximize testing results.

So, the next time I am at the hospital, I will be getting tested for these two other syndromes/disorders/diseases that may help explain cancer at 26. I have something like a 3% chance of having either of these diseases and no one seems to think that I have it (two of the 'qualifying symptoms' is a history of childhood cancers in your family and a head circumference of over 58cm - neither of which I have). If I don't have either of those mutations then my blood work goes onto a research lab where they try to determine what genetic reasoning there may be for my specific breast cancer. I may not know for 10 years but at least they have another sample to work with.

After I found out that I wasn't BRCA positive, I got a little emotional while I was texting my dad. I'm going to take a stab at trying to explain this and hope I don't fail miserably.

I think about the day I found out I had cancer and wonder how I would have reacted if the results were different, if I had not had cancer and the lump had been a harmless cyst. Would I have been so thankful to not have cancer that I would have changed my approach to living (probably not) - the same way I've changed my approach since my diagnosis? My life would have been so different if they would have said 'you do NOT have cancer'. Well, I guess rather than being different, it would have stayed the same - it would have been different than my current life but it would have stayed the same as my pre-diagnosis life. When I am told good 'medical' news, I celebrate it for a day then move on to the next appointment but when I get bad news, it affects the decisions that I make for the rest of my life.

I think about how the last 5 days would have been so different if the BRCA results would have been positive; I would have been planning my next mastectomy, planning a gynecological exam, and I would have been fearful of my mom's/niece's/future children's odds of having it too. I don't have to worry about any of that now. I was given a green light.

It's like I've printed off my life road map from Mapquest and originally, I knew exactly where I was headed but lately new directions are rerouting me into some sketchy neighbourhoods. I get to a traffic light where I'm stuck in these bad parts of town; it always seems to be yellow when I get there - proceed with caution, and then depending on the doctor's appointments and my results, it either turns green or red - both of which severely change the remainder of my trip. Does that make sense?

Wait, what am I talking about? Last week, cancer was my roommate and now I've compared my life with cancer to being at a stop light in the ghetto? I think all I'm trying to say is, we need to celebrate the good news that has no affect on changing our lives and gives us the opportunity to keep it the same.

I get in these moods, these 'see the bright side of things' moods, when I go home and see with my family. Yesterday, I got to hang out with my 4 year old niece and there's nothing like a day with her to put things into perspective. I swear to you, yesterday, for part of the day, cancer wasn't even in my vernacular. Cancer? What cancer? I put all my energy into her so cancer took a back seat. She doesn't care how many breasts I have or if my eyelashes aren't as full and thick as they used to be. She cares about hanging out with Auntie Katie. I got to sing about Batman smelling, robin laying a egg, the Batmobile and the Joker taking ballet. I got to decorate Christmas tree ornaments that just happened to be cookies (bonus) and I got to see the toy section of a department store in a whole new light.

So, when I think about getting this mammogram today, or getting the test results (which might be today, too), I have to remember that, if they are good results, I need to let them positively affect my life as much as they would negatively affect it. If this lump is cancerous that means more surgery, more chemo, etc. etc. so if it's not I think that should mean more celebration, more taking risks and more (intentional) adventures.

Friday, December 2, 2011

The Never Ending Test Results

It's 2am and I have to be at the hospital in 7 hours. I find out if I have the BRCA1 or BRCA2 gene tomorrow.

I think about March 11th and how much that day changed my life. I know that now every March 11th, the day will be recognized and approached with some anxiety and emotion. Will December 2nd have a similar meaning? Do I really need 2 days of diagnosis? If it does turn out that I do have it, do I want to spend the next seven BRCA-free hours, sleeping?

We assume that once you've heard "You have cancer" that there can't be anything worse, that no doctor's appointment will match that doctor's appointment and yet, I seem to be a mere seven hours away from another one. You always wait for the other shoe to drop.

I went to see my oncologist on Tuesday and we talked about how I was feeling, and the lump in 'lefty' and she didn't seem too concerned. She assured me that I was making a difference in the cancer world by speaking about it and writing about it and trying to help others. If only our actions could some how affect our DNA, if only we could change the course of our cells in our bodies by doing good (Ok, is any of this making sense or is this some 2am rambling happening right now?).

To be honest, I seem to have pretty accurate anxiety when it comes to doctor's appointments and when I'm nervous, it is for a reason and when I'm calm and suspect nothing, it turns out to be nothing. I am not so nervous that I am vibrating with fear about tomorrow's appointment but I'm up at 2am so I can't be that calm either.

For those of you who don't know, having the breast cancer gene (BRCA1/BRCA2) means that you are at a higher risk of getting other cancers and so they start looking at taking your other breast and an early hysterectomy; in other words - they try to make you as manly as possible without providing you with the visible hardware of a man.

Whether I worry about this or not, the results sitting in the little folder in the filing cabinet are not going to change. There's a piece of paper, inside a beige coloured folder, sitting in a dark cabinet right now, waiting to be read aloud tomorrow and whether I sleep tonight or not, those results are not going to change. During this whole 'journey' that I've been on in the last 8 1/2 months, people have been saying be 'positive' and yet tomorrow, the only thing I want to hear is, 'negative'.

If I am BRCA positive, it just complicates everything. It makes nothing impossible, just more difficult and I've had enough 'difficult' in my life lately, thank you very much.

I think about all the women who will hear "You have cancer" tomorrow and although, "You are BRCA positive" just doesn't compare, it's another appointment where I have to hold my breath and wait to hear my fate be read to me in a doctor's office.

Mentally, I have been doing really well lately. I feel like cancer was a shitty roommate that has finally moved out and we are slowing fixing the holes that he's punched our walls and trying to clean the stains he left on the carpets; we are trying to mend what he's destroyed. I really don't want to let his jerk-face cousin, BRCA, move in for 2012 - I have too many plans to be preoccupied with him, too (Ok, have I totally lost it? Seriously, now cancer is my roommate? Ok, ok, I'll go to bed).

6h43m until I know...