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 really good 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. 

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 Creamer. Tracy Creamer 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.

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 apointment. 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 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-oxidents 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.

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 outsides 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 Gennah 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.

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 favour, because my sister lives on Maine Island, which 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 a 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.

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 chemoRoom by my chemoNurse, Barb, who asked if my mum was my friend. Mum liked that. The chemoRoom 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 chemoRoom 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 chemoTeach 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 chemoDrugs 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 leukemia. 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 chemoDrug 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 chemoDrug 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 chemoNurse. 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 hospitalised 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 chemoRoom 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 chemoTeach session they showed us this device they call a “baby bottle.” It is used for chemoDrugs 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 hold the chemoDrug and slowly pushes it out over two to three days. The patient carries it around with him. The pharmacist who did our chemoTeach 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 chemoNurse hooking up the “baby bottle.” I’m really glad I don’t have stomach cancer.

It’s getting a lot harder to tell people about my cancer diagnosis. It’s harder because I have worked through the grief and the anger and the part about it being really really scary. It makes it difficult to tell people this horrible news, that really isn’t all that horrible anymore. For one thing, the cancer is all out. The nodes were clear and the margins were clear and that means it wasn’t spreading and they got every bit of the tumor. So it’s weird telling people that I have cancer, when I don’t and then having to explain that even though I don’t have cancer anymore I still have to go through all the nasty treatments.

I’ve also shaved my hair completely, now. Before surgery I had buzzed it down to about 1/8 of an inch so I wouldn’t have to deal with it when I was laid up or having difficulty with my arm. But I’ve shaved it down to the skin now. I just don’t want to have to clean up hair from all over the house, and I think watching it fall out in clumps would be very unsettling. And it’s weird, because I’ve shaved my head many times before. But for some reason knowing that it is because of chemo makes me a bit more protective of my bald head. When the landlord came to get the rent today I put my hat on. I think I don’t want to make other people uncomfortable with it. It’s totally different if it’s a punk rock thing than if it’s a chemotherapy thing.

There are a couple of big questions that keep coming up. One is the issue of Religion or Faith, when it comes to dealing with a health crisis. The other is the idea of it being a crisis at all.

Several times when people have been wishing me well in my journey through cancer they have referred to “this awful time” or this “terrible thing” in my life. And every time I find myself stopping and dwelling on that. Because here’s the thing, in the first few days of the diagnosis it really did feel like my whole world was coming to an end. I was facing my mortality in a way that I never ever thought I would. I was dealing with the possibility of not being around for my daughter’s wedding or graduation or even her first day of kindergarten. But as I have learned more and moved very quickly through the cancer process, I have come to realize that it’s not an awful time in my life and it isn’t this huge crisis.

For one thing, I have come to realize, in a way that might not otherwise be possible, just how much I am loved. Most people will go through their lives never really knowing. I’m sure everyone has days where they wonder if their friends really do like them, or if they just hang around because it’s easier than finding a new social group. In a situation like mine people seem to flock to your side. And you can tell the ones who genuinely want to help in any way they can, and those who don’t. I’ve heard people say that you really find out who your friends are when something like this happens, and I have found out that all of my friends are truly my friends.

For another thing, I am living in a time and a place when cancer really doesn’t have to be scary. I have access to whatever cancer drugs my oncologist feels will do the job. I have access to a top of the line cancer centre, where emphasis is put on making the patient feel good all the time. And breast cancer really is one of the most studied, most funded, most curable cancers. It’s going to be a hard road, there’s no doubt about that. And I will spend the rest of my life with a little voice at the back of my head constantly asking me if the cancer is going to come back, keeping me vigilant. But as I said when I was first diagnosed, I am not sick. I am not dying. I’m going to be around for a long time. I also count myself very lucky that I am not in any real pain, and I will not be. I got a message from one of my cousins in response to one of my blog entries. She told me that my writing reminded her of her own struggles with her health. My cousin, Darcy, spent most of her twenties and a portion of her early thirties in a great deal of pain. I think she still lives her life in pain. My brother told me that the final diagnosis was junior arthritis and rheumatoid arthritis, which resulted in her having, just about, every joint in her body replaced. Her shoulders, hips, knees, wrists, ankles… I didn’t see her at all during the time that she was struggling with her health. I think the last time I had seen her she was in grade 11 or 12. She played basketball. She was tall and beautiful and as the youngest girl in the family, I always really looked up to her. The next time I saw her was at my brother’s wedding. I was shocked when I saw her. While my memory of her may have been based on an idolized version from the mind of a twelve year old, there was no denying the impact the years of illness and the many many surgeries had caused. She was much shorter than she had been and her body looked so frail. I cried. I remember feeling grateful that a whole group of family members were all converging at once, and it took me a while to get to Darcy through the crowd. Because I could not help but weep, and I didn’t want her to see that.

When Darcy told me that my fears and feelings about surgery reminded her of her own struggles, I realized that what I was going through was small in comparison. I knew that very little of what I was to experience was going to cause me physical pain, and that in a matter of 6 or 7 months the whole thing would be over with. I began thinking about people who had been through much harder things. Like my friend, Kim, who lived with failing kidney’s for years, until last year, unable to find a donor to provide her with a healthy kidney, her mother donated one of hers. Kim was rarely able to eat a meal that did not make her ill. She couldn’t enjoy a Christmas dinner or a pint of beer without paying for it later with pain and sickness.

So now, when I start chemotherapy next friday, I will keep these women in my mind. Women who suffered far more than I will, with no certainty that it would ever get better, and still with no real chance of fully recovering. If chemotherapy gets bad enough to make me want it to stop, I will think of my cousin and my friend and know that I can get through this. I will know that there is an end in sight. And I will know that the pain or the sickness is me beating the disease, not the disease beating me.

Finally, I have been thinking about Faith and Religion. I am not a religious person. For the most part I think organized religion is the cause of most of the worlds problems. Often we hear about people battling an illness turning to religion to get them through. Many many people have told me that they are praying for me, and I have to say I am always a bit uncomfortable when they say that. Sometimes I am tempted to say, “don’t do that.” Without getting to deep into a theological rant, here’s what I generally believe about the “god” with a capital G.

People have heard me say, before, that I believe in God the way I believe in Santa Claus. And here’s what I mean by that. Lots of people give to charities at Christmas. Often, it’s the only time they think about the homeless or low income families. Quite often it’s the only time they ever think about spending time with their own families. But once a year for about a month people; buy presents for people they don’t even like; purchase extra groceries to donate to the food bank (but only if there is a bin at the grocery store, so it is convenient), they might sponsor a family or attend charity fund raisers. But most people, only do this at Christmas. They do it “in the spirit of the season.” They use Santa Claus as a reason to be nice to other people.

I believe that God is the same way. People who believe in God, who believe that God makes good things happen, also do nice things because God wants them to. Addicts who get clean and say that God helped them do it, are using God as an excuse or a reason to get clean, when in fact they are the one who did it. People who volunteer because their religion or their god requires them to, people who live their lives striving not to sin because God listed the things that were sins - they are basically using God as a reason to be good people. Just as most of us use Christmas as a reason to make a donation to the food bank (when we otherwise wouldn’t), people who believe in God use Him as a reason to not be assholes. Which ultimately is fine. (Except for when they are assholes about it.) I’ve come to realize that, while I have spent much of my life viewing religious types as kind of gullible and stupid (to be honest), I really shouldn’t fault people for having a reason to be good. I often feel like I want to explain to them that they can just be good on their own account, they don’t need God for that. But what’s the point?

Basically, I see God and the Devil as metaphors. God is a metaphor for anything good that happens in a person’s life or for anything that seems unexplainable - even if there is a perfectly rational explanation. Earthquakes, tornadoes, floods - these are acts of God. A person has a baby when they were told they couldn’t - God did it. I once had someone tell me that God led her to drive up island the very weekend that her car broke down because He wanted her to get a free car given to her by a friend. (Maybe God should focus on the important things, like children dying of AIDS in Africa.) And when something bad happens to us, it is supposed to be God testing us.

The Devil, on the other hand, is a metaphor for the evil things that men do.

And perhaps the reason for laying all this blame and credit on these deities, is so that we can avoid any real responsibility. Because if I fall off the wagon I can blame God or the Devil and avoid taking any responsibility myself.

Ultimately it is organized religion and Dogma that prevent me from believing in any kind of God. Because for centuries, organized religion has been telling us how to live our lives and telling us that God said that our lives were to be a certain way. And in the end I can’t believe in a God who cares more about who is in my bed than he does about children killing each other in the inner cities of America. And I can’t believe in a God who apparently, wants us to continue to populate this already over populated earth at the expense of this earth that he gave us. But mostly I can’t believe in a God who made cancer.

 The truth is, it doesn’t really matter what the result is.  They’re going to cut open the tumor and see what’s inside.  They are going to look at the cancer cells and see what they really are.  And they are going to look at the three or four or six lymph  nodes that they took from my armpit and see if there is any cancer in there.  I should know in ten days - well, ten days from the surgery date (which is a sunday, so eleven days) what was really in there, and if there is likely to be any more still in there.  But in the end it doesn’t really matter.  If I was four years older it might make a difference to my treatment.  But I am getting chemotherapy anyway.  And I will also get radiation anyway.  So really the only thing that will change - or could change, is if I will also get hormone therapy (which, in extreme cases means a hysterectomy) and if I will also get gene therapy (which would come before chemo).

 Another truth, is that no matter how tough you think you are, no matter how much you think you are dealing with it;  it still knocks you on your ass.    I woke up from surgery and I forgot where I was.  I had been dreaming, and I didn’t think people dreamt when they were asleep because of chemicals.  I know that my dreams were pretty weird, but I don’t remember them.  But when I first was waking up, I thought I was in my bed, and that Kurt was next to me.  But only for a few seconds.   Then the nurse sitting next to me and the other post op. patients on either side of me clued me in.  I thought I’d be in recovery for a lot longer.  It seemed like I was recovery for way longer when I had Indiana, and I hadn’t even been under a general anesthetic.  It went really fast, and they asked me a whole bunch of the same questions over and over, and they told me that my mom was waiting to see me, and for some reason I kept being put right in front of the nurses station so I always knew everything that was going on.  The porter that came to move me to the area of the ward where I would spend the night, was very black and very african and it was her birthday.  I kept seeing her smiling face zip past my bed. 

 I kept dozing off and when my mom came in, followed right behind, by Kurt and Rebecca, I think I had my eyes closed.  But she kissed me and I know she was crying a bit.   It seemed really weird because I really didn’t feel like anything had happened.  There were dressings on my boob and my armpit, but they were much smaller than I expected, and I couldn’t really feel anything, except for the tape from the dressings.  And I could see a bit of an indent where the tumor had been.  It was weird to see the indent because there had been such a visible lump before.       

Relief.      

… Ish.     

The first bit of reality came when I had to pee for the first time (which was apparently a big deal, that I had to pee so soon) .  I was totally freaked out about using a bed pan.  I wasn’t aware that there was this awesome cool thing called a commode that was basically a potty on wheels. I felt I could get to the toilet with help, and it would be a good chance to get me cleaned up. (I was still covered in iodine that made my skin all yellow, and there was this sticky goo all over my face from when they taped my eyes shut)   …  Well, I wasn’t ready to get up.  I peed.  And peed.  It was totally exactly like the scene in the first Austin Powers movie, when he first gets unfrozen, and he just keeps peeing.    I think I might have even laughed out loud.  The pee just kept coming.  Without any encouragement from me.  But then I noticed that my IV was leaking, and when I stood up everything went all swimmy, and luckily Kurt was with me or I would have ended up on the floor.  After that I used the commode.    

The second bit of reality came when I left the hospital.  My mom had hired professional cleaners to clean my house the morning of my discharge.  And they were going to still be at my house when I got out of the hospital. So Kurt was supposed to bring the baby to my mom’s house and the four of us would have lunch before taking me home.  Indiana had fallen asleep on the way over and went down for her nap on my mom’s bed, and while she slept my sister an niece came over, as well.  So when Indiana woke up there were two people that she really didn’t know, plus dad and gramma, and me.  Well she was certainly mad at me.  She wouldn’t even look at me.  She kept going to gramma, and bypassing me entirely.  I kept trying to get her to come over and snuggle me, but not being able to pick her up made it that much harder.  I finally broke down and cried.  I had never been so rejected.  I felt at once sorry for myself and guilty for having left my daughter for 24 hours.  I couldn’t even offer her milk because there was still radioactive technetium in my system.  It took until Kurt took Indiana and me home and we spend some time together on the floor for her to come over and snuggle me.  I’m going to be making up for that one for the rest of my life.   

The final dose of reality (so far anyway) came when I took my first shower.  I had Kurt come into the bathroom with me in case I had another fainting spell, like in the hospital, and I also needed his help getting the bandages off.  The incisions weren’t even that bad to look at.   I think I always envision the horror movie version of incisions, because that’s the kind we see in movies the most.  Even my C-section incision - which I would only glance at for the first week - was much more freaky because there were staples, which will make any incision look like the work of the re-animator.    When I got out of the shower I needed my mom to come and help me get dressed (Kurt needs to shower occasionally too)  and some how that is when it hit me.  I needed to sit down and my mom said I’d suddenly gone very pale.  And I just cried.  Probably the most that I’ve cried so far.  And it wasn’t just that my body was irrevocably changed or that this thing had been removed from me.  It was a bit of loss over what I’d like to think was a pretty well near perfect set of breasts (Kurt says I have just regular breasts now, like everybody else) and a bit of the realness of the cancer setting in.  But I also kept thinking about all of the people who have been coming out of the woodwork to help me during this. My friend Selena, who I went to high school with, and whom I haven’t seen in ten years, offered to help me pack for the move in August.   

 The rest of that day, I was pretty emotional.  The whole family took a nap and we started selectively answering the phone.  And just made a really strong effort to be as normal as possible.  The truth is, that as strong as I am;  As strong as I am determined to be, it’s everybody else that will get me through this.  My mom, Kurt, my brother and sisters and all the friends …  It is the collective strength of these people that will beat this disease.  I know now that I can’t do it without them, and I feel very lucky that I don’t have to.   

Here’s the timeline: 

Week of December 19th - Discover a lump (the size and shape of an almond)that I think is a plugged duct. 

2 -3 days later - visit my doctor.  She feels it and right away thinks it’s a milk cyst of some kind.  Advises me to keep an eye on it and follow up in three months. 

March 29th - Return to Doctors office for follow up.  The l;ump is now the size and shape of a chestnut.  She still thinks it’s milk or fibroadinoma.  I tell her I won’t feel good about it until I know for sure. 

April 18th - Ultrasound at Screening mammography clinic.   Radiologist says “It’s not cancer.  It’s not precancerous.  It’s definitely a fibroadinoma.”  Offers me a biopsy just to be 100% sure.  Since I still think it’s a milk thing (and don’t want a firboadinoma that won’t go away ’til menopause) and don’t want to find another baby sitter to come back and follow up, I opt for the biopsy. 

April 23rd - Very early my doctor calls me herself, and tells me that, to everyone’s surprise, the biopsy showed cancer.  She fits me in for an appointment to see her that day.  Luckily, Kurt happens to be working in Victoria that day. We see our family doctor and then the surgeon squeezes me in, also that day.  I am informed that chemotherapy will be a definite and I will have to wean Indiana asap.(after contacting Dr. Jack Newman, I find out that there is a way to continue breast feeding through chemo, but it is hard and may not work) 

April 28th - Bone Scan.  Show up to be injected to find out that  I will be radioactive for 24 hours and should minimize contact with my 13 month old, and can’t breast feed for 48 hours.  I should have pumped some milk.  (Dr. Newman gives me the precise information and I am able to resume breast feeding after only 30 hours)The bone scan shows “something” on my right shin.  An X-ray confirms shin splints.  But no tumors in my bones.  I finally stop clenching my teeth.In the waiting room before the nuclear medicine reception opens there is one of those “take a number” signs.  The number showing on it is “42.”  I take that as a good sign. (either you know what that means, or you don’t.) 

May 1st - Abdominal ultrasound and MRI  Both of these tests are very quick.  The radiologist did not come in to double check any of the pictures on the ultrasound - which I took as a sign that there was nothing to double check.  The MRI is a bit more involved.  They have to start an IV because a contrast has to be in injected while you are in the machine.  I accidentally wear underpants with metallic thread in them.  They don’t burn me but the silver stripes turn copper.  They recommend not breast feeding for 24 hours because of the contrast, but after looking into it further the risk to the baby is .1 % of .1% 

May 2nd - I request to meet with an oncologist before the surgery to talk about time lines and breast feeding and try to make some kind of sense and order out of my chaotic life. 

May 4th (sunday) - the surgeons office calls me and tells me they want to get a CT scan of my abdomen because one of the ultrasound pictures had a “shadow” on my liver, but they couldn’t find it in any of the other pictures.   In addition, I have an appointment with the oncologist as per my request. 

May 7th - CT scan.  The contrast makes me feel like  I’ve done a tequila shot, but no fun feeling afterward. 

May 8th - My first trip tot he BC Cancer Agency.  We are there for over two hours.  There’s nothing like a 13 month old running around to change the mood in the cancer clinic waiting room.   They weigh me and check my blood pressure - all the usual stuff.  I find out that the CT scan showed nothing. The MRI showed nothing new.  I have no tumors anywhere else in my body.  Excellent news.  My onc wants me to have”lots” of chemo as soon as possible.  If he had his way it would be before surgery. I tell him that just isn’t possible since I am still breast feeding.  But, I now know I have roughly a month to wean.  Dr. Newman’s plan just won’t be possible with the planned therapies.  And besides his plan would require me to have radiation first, which probably won’t happen. 

May 15th - Surgery.  We opt for a partial mastectomy with Sentinel lymph node dissection.  I spend 24 hours in the hospital.   The last three of which are spent waiting for a physiotherapist to come and tell me what I already know and read to me from a book of exercises that I already read.

We really do take our bodies for granted. We live in a time when self improvement is the new religion, but even with that focus on ourselves we don’t really have that much respect for our bodies. So much focus has been put on keeping ourselves young. Youth is supposed to be the thing that is always on our side. But in my case youth is not on my side. Youth is kind of making the problem worse.

I grew up in an age when a sexual revolution had happened, but then the other shoe had dropped so now we were all supposed to be afraid of sex. We now had the right to have as much sex as we wanted before, after, during marriage. Or with no marriage at all. But be-ware ’cause it might kill you. I heeded that message, too. I didn’t really date in high-school at all and I lost my virginity when I was 18. And I married that guy. So many of my friends don’t “date.” They get into long term relationships. And sex is a BIG DEAL. I started late then married young. Divorced young. I think it seemed like if you were in a committed relationship - no matter how much of a mistake that relationship might be, then you were safe. I grew up in fear of this thing that might kill me if I slept with the wrong person and I never considered anything else.

I never drank in high-school. Never did drugs. In college either. I was strait-edge, I didn’t do that. My body was a temple, I respected it. My brain was even more sacred to me. The day I was diagnosed with breast cancer Kurt had our friends bring over some weed and he told me flat out I was going to smoke some. It didn’t really do anything. At all. (shrug.) Maybe next time.

I wouldn’t say I really take care of my body. I don’t abuse it. I eat reasonably well. Though I do enjoy an A&W teen burger once in a while. I don’t actively go out and exercise. I don’t go to the gym. Don’t take yoga classes. But I walk everywhere, and I weigh ten pounds less than I did before I was pregnant. When I eventually did take up drinking I didn’t exactly make up for lost time. I went through maybe a six to eight month period where I had a few parties and really did it up right. But I’m no drunk by any stretch of the imagination. I enjoy a pint down at the pub … or more, in my living room, these days.

I’ve always considered myself to be pretty “in touch” with my body. I had a friend in university who was really impressed, once, when I knew, a day or two in advance, that my period was going to be early. I’m not a vain person. I like to look how I look and I enjoy a compliment from my man, but my sense of aesthetics will not be compromised by the loss of my hair. (In fact I’ve already shaved it, and it looks f#@kin’ good) I do worry that I will lose too much weight, and that, like Bilbo when he gave up the ring, age will catch up with me. Not too long ago I was looking in a mirror in natural light and commented on how I don’t have any crow’s feet, yet. I wondered, today, if that will change. If my youthful appearance will be replaced by someone who is haggard and old.

I’m definitely conflicted about the boobs. I know that the surgery will be done in the least invasive way possible, but the tumor is close to the surface, so some skin will have to be taken.

And that

changes

everything.

And the decision still has to be made about whether or not I will have the whole works removed in the future. Kurt wants me to do it. And it’s understandable. His mother went through a long illness. And according to the letters she wrote to her sister, she kept thinking she was done. Kept thinking they had gotten all the cancer. And Kurt doesn’t want that for me. If all the breast tissue is gone, the chances of the cancer coming back are much much less. But that is a big thing to decide. We’re talking about everything. Nipples and all. I can get fake ones. But it’s a long process. And painful. More painful than the original surgery. It’s a really hard thing to decide. My breasts have sustained my daughter for 14 months. They are my link to motherhood, to womanhood. I don’t have to decide that right now. But I do have to decide.

And then there’s sex. Maintaining a physical relationship is already made difficult by the living arrangement of Kurt working in Vancouver 5 days a week and me living here. We haven’t had sex at all since the diagnosis. He comes home tomorrow but I go for surgery the next day. Before I am even fully recovered from surgery I expect to start chemotherapy, which I have been promised will rob me of my sex drive. I will be getting chemotherapy until the end of September. How does a relationship survive? How do you begin to get back to a physical place when this body is no longer the body it was? Pregnancy changes your body. And it is an adjustment. It alters the nature of the physical relationship, a little. But you sign on for that. It’s expected. … This wasn’t part of the deal. How do you go back? How do you … My body is going to be changed. And it won’t be a gradual change, like pregnancy. It won’t happen slowly so that he doesn’t even notice. It won’t be organic. It will just suddenly be different. Damaged. The tissue around where my C-section scar is, has very little feeling. It is coming back slowly, but it may never come back fully. What if that happens to my breast? What if it is always a bit sore? What if it is so ugly that I can’t look at it? Do I become one of those people who has sex with the lights off? With a shirt on? I worry that Kurt will be afraid to touch me.

I know I am going to be faced with some knew realities about my body over the next few months. Just how tough is it? How do I really feel about how I look? I guess we’ll see…