Life With Cancer - Chapters 4-5

Chapter Four - The Blame Game

         I know that it is in our nature as human beings that whenever something bad happens to somebody: cancer, car accident, death (natural or otherwise), accidents in general – we have to find somebody to blame, whether where we place the blame is right or wrong, we still blame somebody or something when something goes wrong. I know I do this myself quite a bit, though now not so much.

         My mom was with me from day one when I was diagnosed with Leukemia, she was there right beside me through every treatment, every test, every time I was poked and proded, she was there. No matter how hard it was for her to watch the stuff I had to go through, she was still there and I know there were a few times it was really hard on her, and she would cry.

         But on top of watching her daughter fight for her life, she also shouldered a lot of misplaced blame and scrutiny. Two major examples for this blame:

1. In September when I had my episode that was classified as a stroke, my mom and dad and brother went to visit my dad’s parents to tell them what was going on. My Opa blasted my parents and brother for me having a stroke, placing the blame straight on mom, for not keeping a cleaner house. He also told my brother that his dog should be put down, because that was the other reason in his mind that I had a stroke. My mom was so angry that she walked out of their house and walked until Dad came and picked her up on the side of the road. She told me it was either walk or hit him.

         Opa said there was no point in chemo, as to how they’ll just be burying me anyway. I understood where Opa was coming from on this one, because he lost a brother now 50 years ago, to Leukemia. But that was 50 years ago, where the only treatment was blood transfusions, they kept him alive for two years on blood transfusions.

         It hurt still to hear this, cause mom told me what had happened. My first thought was my Opa is an asshole to blame my parents for my being sick and for telling my brother his dog should be killed. But my other thought was, do you have any faith in my surviving at all? As it was, there was a lot of bitterness after that, mom and my brother had distanced themselves from my Opa, in fact my brother had stopped talking to them up until a family reunion where nobody knew him, and then he appeared at Opa’s funeral. Otherwise, he had no contact with Dad’s family since that day. Mom went and visited Oma and Opa, but she kept quiet and she stopped going to family functions. Me on the other hand went because then family could see I was still alive at least that was the reason I went, and to visit with Oma.

2. My mom’s own mother blamed mom for my getting sick. I remember this day, because I was there. We had gone to South Cooking Lakes first Trail Days. They had a parade and some festivities, I believe this was in August 2001 or the beginning of September 2001, because I was in the hospital at the time, and I had gotten a day pass so that I could go. I had to wear a surgical mask to prevent any infection in public. After the parade, we were sitting in the hall with my grandparents and some old family friends. Of course, because it was still fresh that I was diagnosed with cancer, everybody wanted to know how I was diagnosed, and naturally why it took so long. So mom and I told the story for the hundredth time that day.

         I’m not sure when it was that grandma spoke up, whether it was during the conversation or after mom and I were finished the “story”, but she went off the deep end. I can’t remember exactly what all she said, but I know she did say to my mom: “Why didn’t you catch it? Why didn’t you take her to the doctor?” All the while she is pointing at mom. I also believe at some point she called mom a bad parent, though she didn’t say that mom was unfit, though I’m sure she was heading that way. She wasn’t being quiet about this and we were in the hall with a lot of people around us, and we were getting a few stares. It had been so out of the blue that mom just sat there, open mouthed with shock. Well, she recovered and said to grandma: “We went to Hackett and he missed it too, so why didn’t he catch it?” Pat, the family friend that had been with us the first few days I was in the hospital to be mom and dad’s support, was sitting beside mom and asked mom to go for a walk, cause mom was holding back tears, she was so embarrassed and humiliated. So they left and I had said that I would be along in a moment. Now in grandma’s little rant, grandpa had spoken up, almost embarrassed and told grandma to shut up, but naturally grandma didn’t listen, I don’t even think she heard him she was talking so loudly. After mom had left with Pat, Kay another family friend had said, “Hindsight is 20/20, mom’s and doctor’s are only human.” I believe that was her attempt to diffuse the situation. I had lost my appetite, and so I stood and said to grandma, (because I couldn’t stay quiet) that if mom was a bad parent then why had she been in the hospital by my side through everything I was going through. That if she wanted to blame somebody then to blame me, because I was after all 18 and it had been my decision not to be admitted into the hospital back in July. Mom had left that decision up to me, because I was due to visit my sister a few days after my visit to emergency back in July. I didn’t want to miss out on that. Without waiting for grandma to say something, I apologized to grandpa and our family friends and left to go find mom and Pat.

         I’m sure at one point dad blamed mom too, though not for very long as I’m sure they had a talk about that where mom told dad not to even go there. As I’m sure there were other people who blamed mom too.

         It just made me so upset how people treated mom, blaming her for stuff she had no control over. It wasn’t like mom decided one day that she wanted a daughter with cancer. Cancer happens.

         After mom told dad not to even dare place his blame on her, he took a different route. He found a support group for family and friends of Leukemia patients. He went to one session, the guy that was leading the group was a Leukemia survivor, who had survived leukemia twice I think it was. He said that Leukemia was caused by major changes in a person’s life.

         Now, Leukemia as far as I know, because after all these years I haven’t kept track as to how much farther research has come for Leukemia. Nobody truly knows just what causes Leukemia. If I remember correctly, it was explained to me that we all have cells in our bodies that carry the Leukemia gene, and sometimes the Leukemia is “activated” I guess you can say, but how that gene is “activated”, it’s still a mystery. There is some theories that being around a lot of power lines can set it off, but I’m not sure how true that one is.

         Dad came at me with the whole thing, that my smoking caused my leukemia. I smoked in Junior High, and part of High School, Dad had caught me and I quit cold turkey December 2000. I wasn’t inhaling because it burned. So I turned it back on dad, if it was my smoking that caused my cancer, than maybe it was my quitting that set it off. Or the fact I lost my virginity a month after I turned 18, it could have been anything. And if it had been my smoking than why hadn’t I gotten cancer sooner like back in Junior High when I started? I also asked him that if a major change in a person’s life is what causes Leukemia, than why isn’t everybody else fighting the same cancer as me? That shut him up, but he told me I should go to one of the sessions. I told him to shove it, I was so upset.

         I wish dad had never gone to that support group because every time we went visiting he would go around and preach to people about what he thought he knew about Leukemia. I remember when he would go into one of his rants mom and I would roll our eyes and walk away because we didn’t want to hear it.

         So while people blamed mom, Dad blamed my lifestyle choices.

         I just wish people would realize that sure you need to blame somebody for whatever reason… just keep in mind the people you are hurting when you’re placing your blame. Whether the blame is placed where it should be placed, or if it’s wrongly placed, you still hurt people. Stop and think for a moment, if the person you are blaming, deserves to be blamed, think “Does this person feel guilty enough already? Does my blaming them openly help them or hurt them?” More than likely it will hurt them and make them feel even worse. And if you’re wrongly blaming somebody stop and think if what you are doing is right, if maybe you should just keep your mouth shut and keep it to yourself.

         Just stop and think, before you place the blame.

Chapter Five - Chemo Treatments

         The protocol that I went through had three stages:

1. Agressive attack – I can’t remember what it was actually called, but this was the stage where I got the most aggressive chemo (excluding the L’Sparginase Needles). I can’t remember exactly what the time frame was for this particular stage, I believe this stage was to last anywhere from six months to a year. Depending on how I handled things and how my body acted to the chemo – fevers, low blood counts, etc. This was the stage where the cancer was attacked as aggressively as my body allowed. Which with the stroke, didn’t go very well, but I did go into remission apparently around the time of my stroke, which was a month after I was diagnosed. I wasn’t told this, until a year later because my hemotologist was afraid that if she told me that I would stop all treatments thinking that was the end of it, and therefore ensuring there would be a relapse. I can’t tell you that I wouldn’t have done such a thing, considering that the time I supposedly went into remission was the same time that I was flat on my back, paralyzed, in diapers and cut off from food and water, who wouldn’t stop treatments? This phase included daily blood work, round the clock chemo for three – four months, intrathecals, chemo three times a week when I wasn’t in the hospital for round the clock chemo. Chemo at this point were a few different kinds. There was the Methotrexate, that looked like orange juice, there was a red chemo, a blue chemo, and a clear chemo called Ventristine. I’m not sure what the red and blue chemos were called because I only got them once or twice and I never asked. The Ventristine I was taken off half way through my third round of it because it caused my drop foot, where I started walking on my toes. It was a side effect of that particular chemo so when I pointed it out I was taken off immediately. I was lucky because I was doing so good I was able to go without it. Test after test to keep track of my heart, lungs and other organs to make sure they stayed healthy and strong. Blood transfusions, because chemo would as we all know kill healthy cells as well as the bad cells, and therefore my white count, hebagloben and potassium were always down. My immunce system would be at an all time low most of the time. So I would also be getting what are called GCSF injections, not sure what the GCSF stands for but it’s a manmade immune system booster. I would get these injections before chemo so I could take the chemo and give my body a fighting chance against outside bugs.

2. Maintenance – This stage was to last a year, it was basically chemo three times a week, bloodwork three times a week. The L’Sparagenas shots for 51 weeks, (2 injections once a week), continuous tests to keep track of things.

3. Prevention – This was the shortest of the three stages. It was chemo once a week, blood once a week, blood tranfusions, and radiation on my brain.

         During the Maintenance and Prevention stages I spent all of my time in Outpatient at the University of Alberta Hospital. When you spend as much time as some of the people there did, like I did, we got to know each other quite well. The nurses became a second family to us. It was awesome, cause the nurses became like my other moms, not only making sure I was taking my pills correctly or eating properly, but they were also asking about other aspects of my life. Did I have a boyfriend yet? Was I going to go back to school? Stuff like that, they were all very genuine and I loved them all.

         When I was told I was going for radiation, I panicked. I had no idea what to expect. Finding out that I had nothing to worry about, it was the least painful part of my whole protocol. I went to the Cross Cancer Institute (CCI) for my treatments. I discovered I was to go for ten days worth of treatments, so two weeks not including weekends. Which was good because radiation took a lot out of my by the fourth treatment.

         The doctors I had were funny, they were always bickering at each other, and then it was like they would remember I was there and start making smart comments about each other. I had one who was always cracking jokes, making me laugh.

         Radiation was the second reason I became Claustrophobic. See for the type of radiation treatments I had, they had to make absolute sure as to where they were going to have the treatment, and they had to make sure I was absolutely still. So to do this, it meant drawing on my face. So I got this mask that covered my whole face. To look at it, it looked totally solid, so I was demanding how they expected me to breath. Well, the masks are actually a plastic mesh, so I could see and breath no problem, didn’t stop the claustrophobic feeling though. This mask they would bolt down to the table, so your head is completely trapped. On the mask, is where they would draw the lines for the treatment so it would be there for the next one. The mask also had a funny smell to it. Prep for the treatment took a lot longer than the actual treatment itself which usually lasted barely five minutes. The radiation caused my scalp to become very tender and red. I also got really tired out from the radiation and chemo treatments that were happening at the same time.

         Now the reason I had radiation done was because Leukemia relapses are mostly started in the spine and brain. Cancer cells can travel up the spine into the brain and hide, only to reappear later on after remission, and cause a relapse. When this happens it is unlikely that a person will survive the relapse. The radiation ensures that all cancer cells that may be in the brain are taken out, to ensure a successful remission.