Wednesday, 7 December 2011

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.


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.

A bunch of little things.(from August 25th, 2008)

I feel like there are too many things that require my attention. But I can't think of what they are. This week seems to have snuck up on me. Suddenly I have to go back to Victoria in three days and I feel as though I am in a bit of a panic. I think I have been thinking about it in terms of just going back for a visit. But tonight it suddenly hit me that I have another treatment on friday and I feel a bit sick about it. I was so in credibly tired today. I woke up feeling really great so I took Indiana to the park and when we got back it was like all my energy had been sucked out of me. I ended up letting Indiana play in her crib for nearly an hour after her nap, just so I could sleep a little more. I'm worried that this means low blood levels again. I don't know if they will bother putting me on neupagen for just one chemo treatment. I really don't want to have to give myself a shot everyday for a week or so.

Another little reality check. I went bra shopping. It's a horrible thing to have to do on a regular day, but this was my first attempt at purchasing a new bra since having Indiana. Not only do I have to figure out what size I am after pregnancy and breast feeding, but I have this whole new consideration of the partial mastectomy to deal with. And even though it hasn't dramatically changed the shape of my breast from the outside point of view, it's different from where I'm looking at it. And my cleavage will never be the same. The scar is visible if I wear even a slightly low-cut tank top, and my boob hangs different. I didn't end up buying a bra. And I nearly started to cry in the store.

Also, I had to buy an eyebrow pencil. I've never been one to pencil my eyebrows. I've never had to. But they are pretty pathetic these days. All patchy and thin. And for some reason that bothered me too. Shopping for an eyebrow pencil. I think the one I bought was too dark though, because it looked really bad when I tried to draw in my brows. We'll see though. My friend Sara is a make-up artist, and she's coming over for a visit tomorrow. We'll see if she can't help me with it. But I almost cried in the Shoppers Drug Mart when picking out a pencil.

I've started going out without a hat, though. It really is very uncomfortable to wear anything on my head, and I mostly wear a hat to keep other people from feeling uncomfortable. And I don't really know if people look at me and get that I'm bald because of chemo or if I just look like a skin-head. Kurt says I look super tough with my bald head. And I don't know if that intimidates people.

I keep thinking of this time when I was in high-school and my friend Genna and I rode our bikes to Salt Spring Island. I had a shaved head then and I remember us stopping outside an Ice Cream shop in Ganges and this little girl was going in with her mother and she looked at my bald head and recoiled, crying out "Ew!"

I don't think I am a vane person. And I have never really cared what people thought of me. I didn't have a six inch Mohawk so that I could be seen as pretty. Perhaps it's the lack of choice. I used to shave my head all the time. Usually on a whim because I was having a bad hair day. And mostly the hair loss doesn't bother me. But I don't like not having a choice about it. Maybe I have a harder time being confident about it. If I have shaved my head for defiant anti-fashion reasons then I can strut around all confident about it, and people remark about the guts that I have to do that. The shaved head becomes a reflection of me. But now, it's simply a reflection of a disease. And it makes me wonder if I have to inform people - my new landlord, my new neighbors - that I have cancer, or if they can tell that for themselves.

Also, chemo induced menopause isn't as great as it sounds. I thought my period would just stop, but it turns out that it's just like natural menopause. -Meaning I have to endure who knows how long of erratic periods that are the exact opposite of stopping. And my cycle could go back to normal after chemo is finished, but it may not, and there's really no way to know which has happened until I either don't have periods anymore or continue to have them for another 15 or so years, when I can go through it again. And of coarse the only way you know if you aren't having your period anymore is if you don't have one anymore. And I remember my mother going through it. You could think you are all done and then 8 months later you get a period. Oh yeah, it's fun.

The home stretch.(from August 16th, 2008)

I've been crying again lately. Partly, I think, it's the exhaustion. I can't begin to explain how tired chemo is making me. Each round it takes me longer and longer to recover. I thought I was tired when my daughter was a newborn. Not even a little bit! I have days where, after a normal day of not doing much, I feel like I've just spent 36 hours traveling half way around the world. That kind of tired where it hurts to even open your eyes and you just want to sleep for three days. But then I can't sleep. It's 1 a.m. and every bedroom in the house has someone sleeping in it, and I'm wide awake. I didn't sleep during my nap today either.

But also there is another kind of tired. The kind where your body just doesn't want to do anymore. Most days I get that feeling after about 10 minutes of doing just about anything. We've just moved into a new house and we're trying to get the place unpacked and set up and livable. But if I hold a hammer for 45 seconds my arms feel like they are ready to fall off and I start to sweat. I need to sit down and have a rest.

It makes it really hard to give your daughter a fun summer. We have this fabulous new back yard but I don't have the energy to even put water in the wading pool. And forget exploring the neighborhood to find playgrounds or toddler groups. I'm worried that if I start off on an outing I'll get too tired to get us back home. I feel a bit house bound and I am relying way too much on the Backyardigans to keep Indiana entertained.

I think that adds to the weepiness. Feeling like a terrible mum. The guilt piles up and it really doesn't matter what anyone else says.

I think that, so far, the chemotherapy has been going so well that I tend to get into this head-space where there's nothing really wrong with me. This is all just a "what if" scenario and there never was any cancer. But then reality comes roaring back and it's like I'm being diagnosed all over again. I was reading on-line today about life insurance. We've been dealing with that lately with the death of my father in law, and I know that I should have some, but am also pretty sure that no one will sell me life insurance right now. Maybe not ever. When you look into life insurance you are forced to think about your mortality, and when you have cancer your mortality is a much more tangible thing. There is a very real possibility - no matter how well I'm doing in this battle, no matter how much I am winning - that in the end I will die from cancer, and that it will happen much much earlier than I intended.

I always thought that I had no reason to fear death. When people would say that thing about how, the number one fear people have is of public speaking; Death is second; I always thought - "Well, I'm not afraid of public speaking and I really have no reason to fear death." I always feared my loved ones having to deal with my death more than death itself. But I don't want to die before I am ready. I want to die when I am very old. And I want to be one of those old ladies that just refuses to go. Like my friend, Matt's, gramma who hadn't had any food or water in over a week and still wouldn't die.

But it creeps up on me; The notion that I might die before I'm ready; The notion that Indiana might have to do things without her mother there - get married, have her babies... And I know that any day anyone of us could get hit by a bus. I know that. But the bus isn't following me around. I do have cancer.

And it's getting harder. Each treatment is harder to bounce back from. Each treatment my blood levels almost aren't high enough and they threaten to put me on drugs to help with that and it means I'm not as strong as I want to be. Each treatment the side effects increase.

The last treatment I realized something. I always get a bit jumpy during the first half hour or so that I am in the chemo room. I am always a bit keyed up. The nurses keep saying its from the dexamethasone that they give me to help with the nausea. But it's not. The jumpiness always happens before the dex has even hit my system. But I realized that it is the same as the jumpiness that I get when I go for a tattoo. I had a tattooer tell me once that the rush you get from being tattooed is similar to a cocaine high. And part of the rush is from the sudden release of blood that you get when the tattooer first starts to work. You get into the chair anticipating the pain and once it starts, when the pain is less than you expected, you relax and get a sudden rush of blood to your limbs. I don't get the as much of a rush anymore when I get a tattoo because I've had enough of them that I am not anticipating the pain so much. But the jittery jumpy feeling I get in the chemo chair, it's the same. I get very nervous on chemo day, now. And as the treatments go on, I get more nervous. The last few times the IV has been harder to get in and it has hurt quite a bit. I've started anticipating that. I've started anticipating the low blood counts and I have been waiting for the side effects to be worse. So I go there all tense and ready for a fight, and I get in the chair and nurse starts the IV and it's like - "Oh. Yeah. This. Alright then."

I think I want the whole thing to be a breeze because then it means I was never really sick. And if I was never really sick it can never come back. I'm home free. Or maybe I think that if it is a breeze for me, then I am tougher than cancer.

And maybe I am. Tougher. But being the tough one means fighting the big battles. It's getting really hard. And it's kind of lonely. Because I can't really share it with anyone. No one else knows. No one else can understand. I guess it is kind of like being the slayer or any other superhero. You kind of have to go it alone. No matter how many people are around to support you. Cuz no one else is the slayer.

Supposedly this experience will make me grow and bring about things in my life that I wouldn't have otherwise. That there will be something good that comes out of all this. But I'd rather not be doing this. If I become a millionaire, somehow, as a result of this battle, I'd still rather be poor and not have cancer. I'd rather be the person who takes it all for granted.

Sunday, 4 December 2011

Who would lie about having cancer? (from July 17th, 2008)

Someone left a comment on my blog that said, "I find your blog boring, I don't think you are telling the truth." The person's name linked to some stupid online advertisement, so I marked it as spam. But still. It keeps bothering me. I don't understand why some one would go out of their way to be an asshole. I can understand being an asshole in passing, or by accident, but to leave a comment on the internet takes effort. When I was first diagnosed my sister's former boss accused her of making it up. She had been looking for a new job and found one at the same time as I was diagnosed, and it worked out in our favor, because my sister lives on Mayne Island, which is very isolated and hard to get to and from. The job she had in a bar made it very difficult for her to get over to see me because she worked late, and often 6 days a week. The new job is a regular 9-5 type deal that makes it easy for her to plan trips to see me. Her boss at the bar accused her of making up the story of my cancer diagnosis as an excuse to quit the job at the bar.

Who does that!? Who would lie about cancer?

And I'm not really sure why it's bothering me so much that this person who I don't even know suggested that I'm not telling the truth about what I'm going through... but it does.

But maybe it's this. Maybe I have been feeling like a bit of a liar. Because I'm not sick. Chemotherapy isn't even making me as sick as it's supposed to. It's barely making me sick at all. It's not making me sick. Not on the outside. I've had minor symptoms related to side effects from chemo. But the thing is they are things that I already get. Mouth sores? I get those any time I'm stressed or run down. Joint pain? Well I was a hairdresser for 5 years and my wrist, elbow and shoulder on my left arm are totally fucked from heavy blow dryers. So far those are the only side effects I've experienced. Other than the hair loss, which I'm kind of digging, now that it doesn't look hideous. But I feel like, because I am handling chemotherapy well, I shouldn't really be counting myself among the sick.

Three weeks ago my father-in-law died. Suddenly. Of a heart attack. At work. No one close to me has ever died before. People slightly removed from me have died. I've been to more funerals than most of my friends. But the only one that was at all close was my best friend's brother, when I was in grade eleven. He locked himself in the garage with the car running. But I've never lost someone who was constantly in my life. And until this happened I don't think I really considered myself close to my father-in-law. But I was. In an odd way, my cancer diagnosis had brought us closer together than ever. And the biggest motivator (besides my daughter) for me to get through this fight and get through it gloriously was for Rick. I can't know what he went through with Paula's cancer battle; What it was like for him to watch the love of his life waste away. But I've always sensed it. And I wasn't in the room when Kurt told him about my diagnosis but I heard his reaction from the living room. Kurt said it "broke him." I so wanted him to see that this thing is not only beatable, but survivable. That you can come out the other side stronger and better for having fought in the war.

In the days following Rick's death there was an amazing outpouring of support from Rick and Maureen's friends. And in the middle of it I felt a bit guilty. I felt like I didn't have a right to take it easy. Even though I had just had chemotherapy a day or two before and I was supposed to be resting, I felt like, because I was "doing so well" that I shouldn't. I think it goes back to the same old thing of being the strong one. All my life I've always been so good at coping, at taking charge, at leading and being strong, that when I'm not, I feel like I have to still be strong.

During the first days after Rick's death I was dealing with so much. My hair was falling out in clumps, and I was bothered by it way more than I expected. More than I wanted to be. It was - and still is - such a stark reminder... such a symbol of cancer. The hair loss has become such a cancer symbol that people shave their heads in support. So here I was finally having to show the world my vulnerability.

And I was dealing with my own loss. A loss of hopes that I had for Indiana's friendship with her grandparents. ... Rick's death represents a loss of so many things that I never had growing up. I was never close to my grandparents. I rarely saw them and I really know little of them. And, as I told the congregation at Rick's funeral, I never had a proper father. Even now, what I have is pieces of fathers. I have three men who together don't form a whole. Each of them fills his own role in his own way, but none of them is a father. Not one of them know the whole me. Not one of them was present for all of my triumphs and all of my failures and all of my teenage moments. The loss of Rick was the loss of the only constant father. He never stopped being a father. He called his boys "son."

And people kept asking me how I was. How I was. People I'd never met. People who'd never met me were concerned for my health even in the midst of their own loss. I felt a bit ashamed. Especially when my answer was that I was doing really well.

But the thing is no matter how well I'm doing. I keep having to face the fact that this is cancer. And as much as the nodes were clear and the margins were excellent. It's still cancer and we still understand very little. Every three weeks I have to go have blood taken out of my arm and I'm very cheerful about it. I get to jump the lines because I'm a chemo patient and I'm very proud of the fact that I'm not sick. But I am. And that's the hardest part. Last time my white count was a little low, so we tested again the morning of chemo and went ahead, regardless. This time my counts are quite low. But rather than delay chemo I'm going to get more drugs. Drugs to help my blood recover from the chemo. I used to avoid medications at all cost. I didn't even take Tylenol unless the head ache was seriously making me want to vomit. Now I have so many drugs in my system. And there's going to be more. I may be participating in a drug trial for a drug to prevent Breast Cancer from metastasizing in the bones.

But suddenly I have this reality check. Whether I feel it or not, I am sick. And it is becoming more evident all the time. I'm fighting hard against it. And I will win. But it is going to be a bit more of a battle than I had planned.

And for anyone who doubts the truth of what I'm writing. Here's a picture of my mutilated right breast. At least I can count myself a true Amazon.

How to wean your baby in about a month. (This is not a recommendation) (from June 23rd 2008)

When all this started Indiana and I were actively nursing 3 times a day; First thing in the morning, before her afternoon nap and before bed. In addition we sometimes had a forth big nurse during the day and many pit stops through-out the day. We were not anywhere near stopping.

I had been one of those women who thought breast feeding a toddler was weird and more about what the mom wanted than what the baby needed. I had planned on nursing for a year, maybe a year and a half, and then stopping.

When I got to six months and some of the moms I knew were starting to wean their six month olds, I wondered why anyone would spend all that time learning to breast feed and then stop right when they got good at it. I had spent six months figuring out exactly what to do, and Indiana had spent six months learning just how she liked it. By that time she could help herself to the boob and I really didn't have to do much. So why would I stop? It had finally gotten to be that truly convenient thing that it was supposed to be. Don't get me wrong. It was convenient before that. I deliberately delayed starting Indiana on solids when she was clearly interested in food, when she was just shy of 5 months, because I was taking her on a road trip and it was going to be way easier to not have to deal with baby food and cereal and bowls and spoons and bibs and everything else while we were away from the house. In the summer when it had been really hot in our cramped south facing apartment I was able to take her into a cool bath tub and nurse her while we both got out of the heat. But right around the six month mark is when it stopped being about perfecting the art of breast feeding and more about just (shrug) breast feeding.

So why would I stop? Would you train for a marathon and then stop running just when you reached your best time? Would you learn how to drive and then quit right before the last turn on the drivers test?

When I got to one year it seemed like a huge milestone. And again mothers all around me were dropping like flies. Some of them found their children self weaning and some were just deciding that one year was enough. They'd set this arbitrary time limit and they'd reached it so... they stopped. But I realized I didn't want to stop. I saw no reason to. I had gone back to work 1 1/2 days a week. (That is to say one week I would work one day and the next I would work two.) I had found that Indiana would sometimes go all day without really nursing much - especially on days when we were out just before nap time and she would fall asleep in her stroller. So I didn't need to provide milk for her on the days that I worked - although I did have to pump to make myself comfortable at work, and I found she was starting to wake up in the middle of the night just to cuddle. But other than having to be the one to put her to bed every night, breast feeding was not inconveniencing my life. Honestly, any event that I wanted to go to in the evening would not be happening before Indiana was in bed, so it did not impact my social life. (Or the social life that I was hoping to have in the future.)

In addition to all the reasons that I could list for continuing to breast feed, not the least of which being the benefit to Indiana's health, I also am very lazy and undisciplined, and I like to avoid anything that might be difficult for me to do. I dreaded the thought of weaning. And I absolutely did not want to give my baby formula. One or two of the mom's in our toddler group were in the process of weaning and having a terrible time at it because their children were constantly asking for milk and crying when they didn't get it. Indiana has never been much of a crier. She's really a very contented and easy going child and I had visions of her becoming a screamer over the issue of being denied breast milk. I didn't want to have to deal with that. I knew I would have no will power to turn her down when she was crying. After months of the breast being the thing that stopped her from crying why would I want to, now, turn it around and make it be the thing that makes her cry? So, since everything I was reading was telling me that it is perfectly normal and natural to let your child decide when to stop and that the world average for breast feeding was 4 to 5 years, I decided I'd let Indiana decided when she was ready to stop. It had become such an enjoyable cuddle time for the two of us, I wanted to let it last as long as possible.

Then I got my news.

Indiana was one day shy of 13 months old when I was diagnosed. My first question to my family doctor was "Will I have to wean?" My doctor's response was based on the standard treatment for breast cancer. The standard treatment was surgery, followed by radiation if the nodes were clear and there was no sign of the cancer spreading. In this scenario I would not have to wean because I already only nursed on the unaffected side. And even if I didn't, one breast would provide enough milk to at least continue some breast feeding.

But when I met with the surgeon later that day the news was not as good. My case is not standard. When it comes to breast cancer, youth is not on my side. And while clear nodes and clear margins make for a better prognosis, it doesn't effect the treatment. Women my age get chemotherapy no matter what. I knew that I was being fast tracked and that I could be in surgery any day. But it was very unclear how long I had to wean Indiana. I didn't know if it would be weeks or months before I started chemotherapy. After having a few hours to absorb all of this shocking news I decided to e-mail Dr. Jack Newman and ask his advise. Here is his response:

You can breastfeed the baby on the side that got radiation, because the radiation will kill off the cells that make milk, so the baby can suck on that side. She won’t get milk, or very little if any, but she can be comforted. For the other side, you can pump off the milk and then offer the breast. The small amount of milk the baby will get will probably have negligible amounts of drug. So the baby can at least stay at the breast and eat solids and drink from a cup. Once the chemotherapy is out of your body (5 times the half life of the drug with the longest half life), you can start breastfeeding again. It’s possible, but it won’t be easy. If the baby rejects the breast because she doesn’t get milk, well, you will have weaned her but it’s she who will have decided, sort of. But if she doesn’t get bottles, she might come back to the breast.

I was bolstered by his response. I knew I was going to have to find out a lot more about my treatments but that there was a chance that I could continue to breast feed through out my cancer journey. Some people thought I was crazy. I was told that I should be focusing on my own health. Many people told me the same old thing, "At least she got 13 months." And everyone seemed to think that the issue was about milk. It's not. Milk has very little to do with it.

I also realized that my cancer treatment was something that I had very little control over. This was something that was happening to my body and happening to me. I was not a willing participant and had no real active role to play. Being able to continue breast feeding through-out my treatment was going to be a way for me to wrestle some kind of control into my life and over my body. And at the time I had no idea what I was in for. I was envisioning being violently ill from the chemotherapy, and I expected to be struggling to deal with the stress of the whole thing. For me continuing to breast feed was going to be something to focus on other than the cancer, and a way for me to have a few moments of relaxation each day, to really focus on my daughter and be a normal mom again.

The way it usually works is that you get diagnosed and they get you in for surgery as soon as possible. As soon as possible depends greatly on where you are, how busy the surgical schedule is, how busy your surgeon is and what else is going on with your cancer. The way it usually goes you get your surgery and then you wait to start chemotherapy. In my case they did all the screening tests that are usually saved for after your nodes come back positive, before the surgery. I have still never really been told why, but I assume that it is because the tumor was missed and grew in my body for nearly 4 months before being biopsied and after I had found it. Also, the usual order of things is that you get your surgery, You wait for the pathology to come back and then you meet with an oncologist who decides, based on the pathology of the tumor and the lymph nodes, what the next step will be, and if chemo is recommended, he decides what the chemo treatments will be. I needed to know sooner than later what my possible treatments would be. I needed to find out just how long I would need to be pumping milk and if Dr. Newman's scenario was even possible. So I requested to be seen by an Oncologist before surgery. At the very least I needed a time line for weaning my daughter. And I also needed to get my life in order. Before the diagnosis we had made plans to move to Vancouver. We were meant to move on June 1st. The diagnosis meant postponing the move, which meant more time spent with Kurt living in a different city from Indiana and me, and longer spent paying two rents. I needed to get control over my life and the only way I could do that was to assert whatever control I could over my treatment.

In the meantime, I felt I had better at least start weaning Indiana. Three feedings a day was a lot to whittle down to none. I figured if I ended up being able to continue then pumping during chemo might be easier if we were only dealing with one feeding a day, and if I ended up not being able to continue, I needed to be able to stop suddenly without going from 3 feedings to none, over night.

I started by eliminating the nap time feeding which would be easy since Indiana already skipped that one on the days that I worked anyway. It was probably not even two weeks between when I stopped the daytime feed and when I stopped the bedtime feed. I figured the bedtime feed was going to be the hardest so I did that one second. We had already experienced putting Indiana to bed without any breast milk when I went for my bone scan and found out on the day, that I would not be able to breast feed or even touch my daughter for 24 hours. Luckily, Indiana had not been nursing to sleep for quite some time. Our bedtime routine involved nursing and then just rocking and singing a song for a while until she was ready to go to sleep. Then I would put her in her crib and she would go to sleep on her own.

The first official night of not breast feeding before bed came on a night that Kurt and I decided to have date night. Indiana's Grandmama and Grandpapa babysat, and there were no problems with her going to bed without having had milk. It really did seem like Indiana had some idea about what was going on and had decided to be a willing participant in the weaning process.

One of the challenges with the whole process was replacing the breast milk. I categorically refuse to support the formula companies. I didn't want Indiana to ever have formula. But up until this point she really wasn't digging cow's milk. Every time I offered it to her she would take one or two sips and then just let it dribble out her mouth. It took a $22 sippy cup to change her mind. But by the time we cut out the bedtime feeding, she was drinking at least two cups of cow's milk a day and that made me feel much better about the whole thing.

Shortly before my surgery I met with my oncologist. We discussed the time line on my treatments. Without me even asking about the specifics of my chemotherapy it became clear that Dr. Newman's plan would not work. To begin with the plan hinged on radiation happening first, before chemotherapy. But the procedure is actually to do chemotherapy and then radiation. Without getting the radiation first, there is no guarantee that the cancer breast will not have milk in it, and therefore cannot be offered as a "dummy" for the baby to suck on for comfort. I have never been able to completely drain my breasts with pumping or with baby, so there was no way I could confidently pump off all of the milk and then allow her to suckle the dry breast. I finally had to face the fact that my breast feeding relationship with Indiana had to come to an end, much much sooner than I wanted. And in fact, Dr. Attwell wanted to start aggressive chemotherapy as soon as possible after surgery, which meant even before the usual 6 week healing period. If he'd had his way, I actually would have chemotherapy before surgery. But I told him I simply needed that time to finish weaning my girl.

The final feeding was the hardest to wean. For me as much as for Indiana. Since Indiana was born my favorite time of day has always been first thing in the morning when I would bring her into my bed with me and she would nurse and then we would cuddle and play until it was time to get up. Often we would go back to sleep for an hour or so. Even when she moved into her own room we kept up this time, and I was worried about how to continue the fun morning snuggle without having the nursing part.

The final wean came very organically. During my recovery from surgery Indiana and I were staying at my mom's house and one morning, quite naturally with no planning, gramma came down stairs and got Indiana and took her upstairs to let me sleep some more. Indiana didn't seem to notice the lack of milk - she was really only nursing for a few minutes by this time anyway.

During this time of weaning Indiana, I sometimes regretted having done sign language with her. "Milk" was the first sign she learned and she would occasionally sign for milk when I was not able to give it to her and those were the hardest times. I had taught her this language so that she could ask for the things she needed. I had been very carefully to always give her milk when she signed it, in order to enforce the language. Now here I was denying her.

For about two weeks Indiana seemed completely oblivious to the milk having stopped. We've been able to continue to have our morning snuggle in the bed, and when she starts snooping around for milk that is when I ask her if she wants some breakfast, and we get up. For a while she would try to help herself to milk and get very upset and cry when I denied her. But she has started laughing, now when I turn her down. She still occasionally tries to go for the nipple, but it's our little joke now.

I still feel a bit sad that our breast feeding relationship had to come to an end so early. In the end we breast fed for over 14 months. Kurt and I had decided before the diagnosis that we were not going to have any more children, and that decision is pretty much out of our hands since chemotherapy will probably render me infertile. But the only thought I've ever had regarding having another child has been so that I can finish my breast feeding journey. But that is a silly thought. My only real regret is that I don't have more pictures of Indiana and I breastfeeding.

As of right now we have not breast fed for nearly four weeks. I had weaned gradually enough that it took about a week for my breast to become engorged and the ducts to become a bit blocked. I had to pump off the milk in the shower with the warm water running on me and massage out the plugged duct. The second plugged duct came two weeks later and as of right now there is little to no milk left. Indiana still tries to go for the breast once in a while, but doesn't seem bothered when I deny her.

Some breast feeding resources:

1 down, 5 to Go. (from June 8th, 2008)

I'll try to be brief. I've already stayed up later than I intended, but a side effect of one of the anti-nausea drugs is that it gives me a bit of a buzz.

Chemotherapy session number one took much longer than I expected. I knew that there would be a big preamble before getting down to the injections, but the drugs themselves took longer than I thought.

I arrived at the BC Cancer Agency at quarter to one, with my mum. We were shown into the chemo Room by my chemo Nurse, Barb, who asked if my mum was my friend. Mum liked that. The chemo Room at BCCA is not like ones I've seen in videos or in movies. They always seem like these dark little cells, and the patients seem to depressed. The chemo Room at BCCA is bright, with lots of windows. Outside are lots of trees, so you feel like you are in the middle of a little Gary Oak Meadow. During your chemo you are allowed to eat and drink and get up to pee (towing your IV stand behind you) and there are volunteers who come around with a tea tray and offer you coffee, tea or juice to drink, and a choice of soda crackers or digestive biscuits to eat. Our volunteer, Erma, is probably in her 70s and she was the same volunteer who gave me the tour of the place when I went for my chemo Teach session.

After going through all of the details of what to expect and explaining in detail all of my anti-nausea meds (I have four different levels of anti-nausea pill, starting with the big guns that I take before chemo and ending with regular gravol, which is for use in-between the in-between pill, because the big guns can only be taken every 12 hours, and only for the first couple of days), an IV was started - Barb took a good look at my arm and informed me that we would be feeding my Sea Horse (I didn't correct her and tell her that it is a Crayon Pony Fish - which of coarse doesn't exist, except for in the mind of Wes Anderson).

My chemo Drugs are abbreviated as FEC. I remembered the name of it from day one, when my oncologist told me what I would most likely be getting. It's not hard to remember. I wish I was good enough to remember what it stands for. I probably will by the end, but right now it's nearly 1:30 in the morning and I can't be bothered to go find the sheet with it all written down. Basically the three letters stand for the three drugs I'm getting. The "E" is given first, and it's the worst one. It has the worst long term risks which include a 1% chance of heart damage and between 1 and 2 % chance of giving me leukaemia. It also can burn my veins and cause irritation in my urinary tract. And it's bright red. (The night before my chemo I had beets for dinner. I knew that I might be getting a drug that would make my pee red, and I seriously debated whether I should avoid the beets so that I would know which thing was making my pee red. But Kurt was coming home and he hates beets, so I had to eat them before he came home. The chemo drug made my pee exactly the same colour as the beets. I still don't know which one is still tinting my urine.) Anyway... The first chemo Drug gets pushed into the IV by hand. Three huge syringes of it. It took about 15 minutes. I had to pee before the third went in. I was told to drink lots of water to flush my system. I think I was doing okay. I peed about 4 times while I was at the clinic.

The second chemo Drug was the "F". It was also pushed in to the IV by hand. Only there was just one smaller syringe and it was not red. And finally the "C." It was dripped in over about 45 minutes and made me feel like I had sinusitis. In between each medicine the IV was left to run with just saline so that my vein could be flushed and again at the end. Then the IV was removed and as soon as it mostly stopped bleeding (I'm a bleeder) I was allowed to leave.

My mother and I had some lovely conversations with Barb, my chemo Nurse. She worked as a traveling nurse for many years and seems to have had a very interesting life. We talked about animals and how they react to their people going through illnesses - she told us about a breast cancer patient whose husband was blind, and his seeing eye dog would refuse to leave her side while she was getting chemo. She was even hospitalized over night once, and the husband had to go home with a friend because the dog would not leave.

There were three other patients in the chemo Room while I was there. They all seemed much more subdued than we were, and my mum and I both wondered if we were being a bit too boisterous. Each of the other patients had a companion, but they would just sit and read to themselves.

There was one man receiving treatment for, what I think was stomach cancer. At my chemo Teach session they showed us this device they call a "baby bottle." It is used for chemo Drugs that need to be administered slowly over a few days. It looks like a baby bottle with a tube coming out where the nipple should be. Inside is a balloon that holds the chemo Drug and slowly pushes it out over two to three days. The patient carries it around with him. The pharmacist who did our chemo Teach session said it's mostly used for drugs to treat stomach cancer. Many of the odd and unpleasant exceptions to the stuff she was telling us was to do with stomach cancer. Anyway, this gentleman had had 3 bags of stuff hooked up to his IV at one time, and as we were leaving I saw his chemo Nurse hooking up the "baby bottle." I'm really glad I don't have stomach cancer.