2011 - Taking Stock

It’s that time of year when everyone makes the ubiquitous resolutions. To me what most people make is not a resolution. If your resolution is to lose weight or quit smoking, I don’t see it as a resolution. Those things are goals and should have specifics attached to them. To me a resolution is more about a way of being or a behavior. For the past few years I have made one resolution and set a list of goals for myself for the year. The last two years my resolution has been the same, as it’s not really a concrete thing and it should be something I continue to strive for – or strive to be. The past two years my resolution has been to be less judgmental of others. This means not judging how other people parent their children, not making judgments about choices others make in their lives and even not making fun of what someone else chooses to ware. This is all on the way to being a more understanding person and realizing that I have no idea what causes other people to make the choices they do, and just because they are not the choices I would make, does not mean they are wrong. This resolution of mine to be less judgmental is an ongoing thing and doesn’t really stop.

In addition to my one resolution I always set goals for the coming year. Before I set the new year’s goals I like to take stock of the ending year’s goals to see how I did. Goals are more proactive and easier to accomplish than resolutions. For example, if I make a resolution to get in shape or exercise more, it’s doomed to failure because what does that even mean? If I set a goal to run a 5K on a certain date, I obligate myself to get in the required shape necessary to run the 5K.

So here we go: (from Facebook notes, January 5^th 2011)

“I don't make resolutions, I set goals. Posting them on Facebook puts them out there so that I can be held accountable. Last year I was pretty successful with the goals I set. SO here I go again...

1. Actually run in the CIBC run for the Cure, instead of walking.

2. Have my finished manuscript in the hands of a publisher by the end of the year.

3. Finish a first draft of the new book.

4. Begin writing Asylum part 2 (the working title of which is Empire because in it, things are going to go from bad to worse and we will meet James' roguish black friend. And there will be a cliffhanger.)

5. End the year living someplace that I want to live.

6. Get out from behind the chair in the salon. I can't physically do it anymore. Or at least cut back to only doing hair part time.

7. Learn to manage my stress. Probably seek out some sort of external avenue for this.

8. Get back to learning to play the guitar.

9. Continue working on being less judgmental of others. This one is really hard and I failed at it last year.

10. See my friends more.”

So How'd I do?

1. I did actually run in the CIBC Run for the Cure. I was 4 months pregnant and I ran it in 40 minutes. Next year I hope to run it in less time and do it while pushing a 5-month-old baby in front of me.
2. Ha ha. This was a pretty lofty goal. I was a bit naïve about what it actually takes to accomplish this one. Manuscript number 1 is still in the final editing stages but one of my goals for 2012 is to focus on this and make it happen.
3. As with goal number 2 I expected a lot out of myself. I also didn’t expect to move to a new town and get pregnant. Two things that prevented me from spending as much time writing as I wanted. Also book number two grew a lot in 2011 and is a much bigger story than I originally planned. It has a title though and I am probably about half way through writing it. I think it’s going to be a many years writing project with other things being written and finished while I toil away. It’s only been ten years since I started this one so what’s a couple more?
4. Part two of Asylum has pages and pages of notes, but I really need to finish something before I start something new so for now it’s at the back of my head begging to be written. When I eventually do get around to it, it will probably go even faster than part 1 did.
5. I’m certainly happier living where I am now than I was in Burnaby. More about this in number 7.
6. Well, I almost accomplished this. I started out working just 2 days a week when I moved to Port Hardy but bumped it up to 4 leading up to Christmas and so that I could get enough hours to qualify for Maternity leave. In March I go on maternity leave so, I’m almost there.
7. I don’t know if I’ve learned to manage my stress, but being out of the city and living here in this small northern town has dramatically reduced my stress levels. And putting real effort into running and working out has given me a physical outlet for my stress.
8. Other than moving it from one house to another I have not even picked up my guitar. Writing has dominated pretty much all of my “spare” time.
9. I think I am getting better at this, and as I have said, it’s an ongoing thing.
10. I spent a couple of extended weeks in Victoria last summer so I probably saw my friends more than the year before but still not enough.

So what are my goals for 2012?

1. Run in the CIBC Run for the Cure, again.
2. Start a Stroller fit group in Port Hardy – as much for my own physical fitness as anything.
3. Start a breast-feeding group – again as much for my own selfish needs as for others.
4. Enter in at least three categories of the TriPort Fall Fair (pickles, Crocheting … something else)
5. Complete the three crochet projects I have in mind for the baby.
6. Do some extra curricular crochet projects to try to sell next Christmas.
7. For writing goals: Focus on getting Asylum published by the end of the year.
8. Seek out venues to publish short stories so I can have something out there.
9. Set aside at least 1 day a week to devote to my blog.
10. Find a crit. partner.
11. Continue working on being less judgmental of others.
12. Make an effort to phone or Skype with friends and family instead of just using Facebook to communicate with them.

Some of this means spending a little less time on writing, but I need to find some balance. And really if I waste less time on facebook and twitter I'll have plenty of time to do all this and write.

The long and winding road. (from Oct. 15th, 2009)

In some ways... many ways the journey will never really be over. Not entirely. I feel like the beginning of David Lynch's "Lost Highway" when the road just keeps going on to who knows where, and all there is is a line on the highway.

I'm trying to get my life back on track. I've started working out, because, while I wasn't in super great shape before, sitting around taking it easy has made me flabby. But as much as I want it all to be behind me it's not. I still have to be careful not to tire myself out. And I'll have good days and bad days. Mostly when I get to that point where I feel a bit tired and want to stop what I'm doing something- washing dishes, making the beds - I have to actually sit down and take a break. And I have to not think of myself as lazy because of it. I have to let it be okay that I am still recovering. And I have to let it take as long as it takes. The feeling is coming back in my boob around the surgical site and that means that it hurts more than it did. If I run I have to hold my boob. That's just the way it is. sometimes I expect my body to be like it was. But it never will be. I just have to accept that. In fact, my entire right side is weaker then the left. I've been working out using Wii Fit and my right side is consistently worse in everything. I have to accept that that may never get all the way better. I have to accept "the new normal" as my radiation oncologist said yesterday. He was talking about breast self exams, but I think it applies to everything. And I'll never know if it's over. I guess when I stop having to go for mammograms every three months I'll feel more like I'm at the end. But the journey is on going. That's another thing I have to accept. (from January 2009)

...

I have been away from this for a long time. It's sometimes hard to want to write. It's hard to admit to myself that I am still dealing with it and that the journey isn't over. Will never be over. I mean theoretically, the end of a cancer journey is when cancer kills you. So hopefully that won't happen. Unless they come up with a pill or a treatment that will guarantee that the cancer won't come back. But I'm not holding my breath for that one.

I've passed a year since ending chemotherapy. I've gone back to work. Part time at first and now full time and as much as I like to keep up a brave face, it is really hard. The cancer comes up sometimes at work - it has to, when you are talking to people about hair inevitably your own hair comes into the conversation and the fact it's newly curly needs explaining. I find it weird to tell people because their immediate reaction is to be all serious and it makes some people uncomfortable but I don't think of it as being all that serious. Also, the days are long and my body is so tired. I feel like I will never not be tired again. It's so deep down. When I was pregnant and getting to the end, I thought that was as tired as a person could ever be. But it was nothing. Before when I thought I was doing well, it was because I didn't do anything all day.

And I know my family takes issue with me being back at work. That they blame Kurt or hold him responsible. The reason I decided to go back to work was that Kurt hated his job and there was nowhere for him to go in it. It was also only a matter of time before the economy caused his job to no longer be there. So I told him to quit. That I would go back to work and he should go to school to do what he wants. He's going to school for broadcasting and so far he is loving it and I know he is going to be awesome at it. But my family thinks he is making me go to work, and that he should just get a job and be the breadwinner so... I don't know... so I can sit home and do nothing? We couldn't survive for much longer on just his salary anyway. I would have had to go back to work sooner or later. And there is no job that he could have gotten that would support us without going back to school.

But it just makes it so much harder for me to think that my family is not supportive of what we are doing over here.

(sigh)

My life is forever different. My body is forever different. In the summer I was having some concerns about my heart. One of the possible risks of chemotherapy is a 1% chance that it can damage your heart. So I had a bunch of tests. They didn't seem to turn up anything but I am still not convinced. I have this fear that I will die in my sleep and that Kurt will get up and go to school in the morning and not notice that I am not just sleeping. And then I'll be dead and Indiana will be stuck in her crib screaming and crying with no one to come and get her until Kurt comes home from school. I know that it is kind of a silly fear but I have it none the less.

My mortality is this thing that is out there in front of me now, and no matter how well I do, no matter how much my tests come back clear I will always be a little bit afraid.

I beat up Eric Cartman. (from March 30th 2009)

It will never go away. It doesn't matter how long I live; If the cancer never comes back; If they gave me a pill tomorrow, that would guarantee that the cancer wouldn't come back, it will never go away. It's a part of my life and it will never be over.

I haven't written anything in a few months because I was feeling like I had nothing left to write. It took an episode of South Park (of all things) to get me back at the computer.

You think that it will start to not have such an impact... or .... I don't know, move into the background. But not a day goes by where it doesn't come into play in my life in some way. A few months ago we bought Wii Fit. The idea was to start getting in shape with Wii Fit and then start exercising for real when the weather gets good and we have a bit more of a handle on our daily routine. The Yoga portion of the Wii Fit workout is pretty tame. But at first I couldn't do some of it. The muscles and ligaments on the right side of my back and chest and my right shoulder were all weak and stiff. And when I run I have to hold my right arm up over my head to keep my breast from hurting. I bought a reallygood sports bra, but some days I still have to hold my arm over my head. I've had to be really gentle and slowly work my way up to doing simple Yoga poses.

Also, when you have a 2 year old you spend a lot of time getting kicked or punched or head-butted in the chest. Most mom's probably barely notice. I notice every time.


I also find it really interesting... I was discussing surgery with a woman I know who elected to have the full bilateral mastectomy as a preemptive strike because there is so much breast cancer in her family she is pretty much guaranteed to get it. I talked about wanting to reconsider that surgical option when Indiana is older and doesn't require quite so much physically active momming. My friend remarked about not wanting her son to consciously see her go through that pain and horror. But I think they know. Indiana certainly seems to know.

I don't know, it's weird. She has started becoming very aware of all the body stuff. One of her new favorite phrases is "a happen?" She points to my C-section scar every time she sees it and asks "a happen?" And I kindly tell her "You happened." She seems to ignore my breast cancer scar altogether. She thinks my boobs are totally funny and makes her wind-up toy-fish drink milk from them, but it's as if she doesn't even see the huge pink scar (way more noticeable than my 2-year-old c-section scar) on the top of my right breast.

I sometimes wonder if there isn't something wrong with me because I didn't a have harder time with it. Because I am not more damaged by it. But at the same time I wonder if people are tired of hearing about it. I feel like I can't leave it alone. Like it is something that I should never stop talking about. Maybe if I don't ever stop talking about my experience then I won't have to go through it again. I feel like there might be some clever literary or filmic reference I can make here but I can't think of what it is.

But anyway. South Park made me cry and I beat up Eric Cartman and if you've seen the episode than you know what I mean. I think Principal Victoria has officially replaced Butters as my favorite South Park character.

Where to go from here... (from Nov. 28th, 2008)

My friend Devon told me recently that I am her hero. That's a weird thing. It's hard to feel like a hero when your hair is coming in more white than it was, when you still have huge dark circles under your eyes that seem like they'll never go away, when the vein in your arm still hurts, 2 months later, and when you look in the mirror and see that this experience has definitely aged you. I remember not all that long before my diagnosis looking in the vanity mirror in the car, with the benefit of natural sunlight, and remarking how I was doing pretty well for almost 32. I'm probably still doing pretty well, but I can see the difference.

Dev's mom was going through chemotherapy at the same time as me. She had a very rare form of leukemia and was not doing well in the fight. And when the doctors told her there was nothing more they could do, she gave up. It's hard to imagine that your mind has that much power over your body. Her doctors gave her 7 months, and she died with-in a few weeks. On the other hand, my mom's friend Emmy was given two years and she's been surviving for 20.

I cried a lot when I heard about Dev's mom. We had chemo together a couple of times, and I think it was a weird and sudden dose of the fatality of cancer. It's really weird when someone is there and then suddenly they're not.

Even though my cancer treatment is over my cancer journey is not. I don't know what will come next. And I don't know how much longer the journey will last. Radiation was so fast and uneventful that I barely have reason to talk about it. It has made my breast quite tender, and though the scar was beginning to regain some feeling, it has gone all numb again. And it looks pretty ugly. It's better than it was. But it's all red and peely. Like the worst sun-burn you ever had. And I think I'm still trying to be tough. I refused to get the prescription ointment for it until I was really in a lot of pain and anything touching the breast hurt. I want my life to be back to normal but I don't know what normal is anymore.

I still haven't bought a new bra.

The difference 24 years makes (Here's what I know)(from Oct. 8th, 2008)

I've always had a strange longing ... or .... I don't know gap ... I feel the lack of Kurt's mom in my life. From my first date with Kurt, when we were getting to know each other and he told me about his mom dying when he was child, I have felt her absence in our lives. I've never been able to imagine anything more tragic than not having a mother.


After Kurt and I travelled to New Zealand and got to know her family, and got married, Kurt told me that he didn't think he would have been able to get married if he hadn't gone there. He felt a connection by being there, walking in the places where she walked; where she grew up. He never visits her grave because he says she's not there. But in New Zealand he felt that she was there.


For me, I needed to know who this woman was. His father rarely, if ever talked about her. The boys, Adam and Kurt, always referred to her by her name, Paula, not as "mom." Kurt has few direct memories of her and Adam, I suspect has none. I realize that any memories Adam may have, would be of her battling breast cancer. So going to New Zealand and spending time with the people who knew her most was the best way I had of knowing anything about her. And I needed to know. I still do. And what better way to get to know a woman than to get to know her sister?


Paula's family spoke of her differently than Kurt's family. They told stories of her childhood and what she was like. For some of Paula's cousins - and maybe even her mother and sister - I'm sure there was a certain distance. Paula was taken away by a handsome Canadian boy and never came back. But they talked about her, and they kept pictures of her around. And getting to know them made me feel like I at least knew something about her.

It always bothered me that I didn't really know what kind of cancer she had. All I knew about her illness was what Kurt remembered (he was 4 when she was diagnosed) and what I was able to glean from an incomplete set of letters that she wrote to her mother and sister during her illness. No one ever said what kind of cancer she had. And I felt like I couldn't ask. I knew that in the beginning she thought she had a slipped disk, and it took a lot of tests before they found the tumor. And I knew from her letters that she'd had a mastectomy some time during her treatment - about six months in, I think. Once I was diagnosed and read all that I read, I knew that it was breast cancer. I have since had confirmation from her sister, Kate.


There is something else I know, which her family may not know - I don't think her boys know - and that is that the way they found the cancer, there never was any chance for her. I know that they didn't know it at the time, because in the letters she talks about getting better. She talks like she has beaten it. And the letters are dated only months before she died. I know this because breast cancer is curable when it is still in the breast. But once it has spread to other parts of the body, it's not. These days they can treat it and people can live a long time with cancer. I know someone who has been living with cancer for 20 years. But back then ... back then you had to survive chemotherapy first.

I think about Paula. I think about Rick. Each time I think about it more and more of the grim reality of Paula's illness falls into place. She would have had surgery to remove the tumor from her spine - by the time they found it she already couldn't walk. She had a mastectomy to remove, who knows how large or how many tumors from her breast

....

They told me that my tumor - 3.5 cm in diameter, contained in the duct - was probably there for 5 years. A five year old tumor - that doubled in size in three months, and they had to take some of the skin with it ... that's catching it early. I was thoroughly examined over the course of 9 months leading up to only a year before my diagnosis, and there was nothing to detect. So I can't help but wonder how long the cancer was in Paula's body before they found it. She was 30 when she died. It must have been there when she was a teenager.


I have so many questions. I wonder were her breasts lumpy and she just didn't know any better? I wonder did she have any trouble nursing on that side? (Indiana rejected my right breast and that's actually why I found the lump) I'd like to talk to her oncologist... But I can't even ask Rick these questions anymore. I don't think anyone even knows the name of her oncologist.

I always flash back to Kurt telling his dad the news of my diagnosis. That was always the worst part. Even when I was going for the diagnostic ultra-sound - when we still thought it was cheese - when I was sitting in the waiting room and my mind momentarily went to that place. I thought, "How would I tell Rick?" Kurt insisted on telling his dad, alone. And I was in the other room, and heard Rick's reaction. I think Kurt said later that it broke him. How do you tell a man who has lived 24 years in sorrow - who watched his love cut up and poisoned and puking her guts out from chemotherapy? How do you tell a man who watched his lover, his partner, his friend, and the mother of his children, die slowly - that his son is going to have to fight that same fight? In the beginning as I was going through tests and hearing the possibilities, I could tell that Rick did not want to hear about it. I can imagine that in the early eighties there was a lot of false hope. They knew so little compared to now. Even when I was being told that I would have to have chemotherapy, the idea that I had in my head was based on movies from the eighties like "Dying Young." And on Tracy C…..r. Tracy C……..r had Leukemia when I was in grade 5. She couldn't come to school. She was in Children's Hospital and we all wrote her letters and made get well cards. And once in a while she would come to school for a visit. I threw up once during my entire 6 chemo cycled. And I'm pretty sure it had more to do with the Ben & Jerry's cookie dough ice cream then with chemo, specifically. Women going through chemotherapy for breast cancer these days continue to work and look after their families, some of them keep up a version of their regular fitness routine, and lots of women who are currently battling cancer participate in the "run for the cure".

I used to tell Kurt that what happened to his mom wouldn't happen to me. He lives his whole life in fear that I will die and leave him, the way his mom died and left his dad. So when I was diagnosed, I actually brought it up. "I promised you this wouldn't happen." I told him.

But what happened to his mom, didn't happen to me. What happened to me is totally different.

It's not over 'til it's over.(from Oct. 6th, 2008)

I am a week and a half into my final chemo cycle. That means I had my last treatment a week and a half ago. As I expected my treatment was delayed because my white cell count was too low. So my last dose was the day before my 32nd birthday.

I've also begun the final stage of my treatment. After chemotherapy you get radiation. Chemotherapy is a systemic treatment. It is designed to catch any wayward cancer cells floating around anywhere in your body. Radiation is about treating the specific area that had the cancer. They blast the breast with radiation to kill any remaining cancer cells that weren't caught with surgery. The idea is that normal cells will recover from the radiation but abnormal cells, rapidly dividing cells will die. It sounds scary because we live in an atomic age and we have been taught that anything radioactive is bad. But through my cancer experience I have learned that there are vastly varying degrees of radioactive and that all types of radiation are not created equal.

For radiation therapy used to treat cancers they use an ordinary X-ray machine. They just use a stronger blast than they use to look at your bones. I went to the Vancouver cancer agency for my Radiation planning appointment. I was prepared for it to be gloomier than the Victoria cancer agency. The Victoria agency is brand new, and has lots of windows, so it's actually quite a nice building to be in. The Vancouver Cancer Agency is not. I felt like I was in a bad movie. Luckily I only have to be there for short periods of time.

For the radiation planning, they do what's called a CT simulation. It's not the same as a diagnostic CT where you have to drink nasty tracers and have things injected into you (which is good, because I guarantee my veins couldn't handle the stuff they put in me for my last CT). They just use the CT machine to get a 3 dimensional picture of the breast so that they can decide exactly where to aim the radiation. They take some pictures and then they actually mark your skin permanently with tattoos so that they can place the X-ray machine in the exact same spot each time. I will be going for 16 doses of radiation, every day, monday to friday starting in mid october. The length of the treatment is the reason for the use of tattoos. It's no big deal, they are just two pin prick sized dots. I don't know what I was expecting, but the tattooing process was very old school. They literally put a dob of ink on me with a Q-tip and then poked me with a needle. And they had to adjust the positioning slightly because of an existing tattoo. It takes them about a week to plan my treatments and then they will call me with my appointment times.

Being done chemo, I thought I would start to feel better already. I guess I hoped more than anything. But I keep being told that it could be six months or longer before I stop feeling tired and having moments of nausea. I find that I tire myself out easily and when I do that I feel a bit of nausea for a while. But at the same time if I get out and do things, enjoy some fresh air, have some fun - I actually feel better over all. So I am making an effort to get my life back in order and start getting out of the house.

I guess it'll be a long road to recovery.

I'm not afraid for me, I'm afraid for my daughter.(from Sept. 5th, 2008)

I never thought it would ever cross my mind to wish I had a son instead of a daughter. But it suddenly occurs to me how much less worry I would have if Indiana had been a boy. And now I also feel worry for my brand new niece. I feel like I have introduced a time bomb into the lives of the women in my family. Because my cancer is almost certainly genetic. That means that every female who is genetically connected to me could potentially carry the same gene. The wife of a friend recently opted to have an elective bilateral mastectomy because there is so much breast cancer in her family. My cancer combined with Kurt's mom's cancer gives Indiana nearly a 50% chance of developing breast cancer in her lifetime. Regardless of lifestyle. Regardless of breast feeding before 28. If she has nothing but anti-oxidants for the rest of her life, the genetic factor alone puts her in a position of having to make that decision. And since each subsequent generation will most likely get breast cancer a decade earlier, that means in her twenties... Before she even has a chance to decide if she is ready to have babies or breast feed them, or even meet the person she wants to spend her life with, she may be faced with the decision of whether or not to have her breasts cut off so she doesn't have to go through what I am going through. I don't want that. My mom once remarked that "breast cancer has come to live in our family." And she was so right. Even after I am finished with my treatments. If I reach the ten year all clear mark and I can leave my battle behind, breast cancer will always reside in our family. It is a part of us now. And no matter how much we don't want it to be, we can't change it. The only thing I can do is hope for a breakthrough. Hope that the people who know more than I do, can find a solution ... a way to prevent it from coming to rest on my daughter, and my niece and my daughter's daughters. In this I feel so helpless. I feel so un-useful. Even Indiana ever asks me about it, I can't even assure her that it won't happen to her, as I once assured Kurt that it wouldn't happen to me.