Life With Cancer - Chapters 14-15

Chapter Fourteen - Stuff I Put Up With

You don't look sick.

Everybody gets tired.

You're just getting older.

You need to exercise more.

And the list goes on.

          Cancer patients along with people who suffer pain, aren’t the only ones that have to contend with people giving their opinions. There are a lot of unseen illnesses out there that people suffer from and there are those people out there that all think they are doctors, and therefore they have their opinions because they figure they are right and there are no other options.

         I have heard every single one of these and more in my years of battling cancer and pain. Not only from regular people but from doctor’s too. It is extremely frustrating and hurtful, I felt like I had no voice.

         Now that wasn’t the only thing I put up with. The doctor’s kept stuff from me too. I would find out stuff years after they happened. The doctor’s always told me that if I had a complaint or a question, or if something was wrong to always speak up, to ask questions. They bitched every time they would ask if I had questions or concerns and I would say no, that I was too quiet. But every time I did say something, there was excuses as to why I was having some problems.

         When I complained about pain (and I’m sure I mentioned this already at some point), my doctor’s told me that I was stiffening up, that I wasn’t walking enough, wasn’t exercising enough. I also heard this from some family members. At some point I was told that the pain I felt was in my head, and I should just get over it.

         Now the other stuff: After my stroke, and my hip problems started up, I was going to specialist after specialist because I was starting to walk on my toes. I was getting so tired of dealing with my legs, that I would stop complaining about the pain. But I also got to the point after a couple of  years, that when the doc asked if anything had changed or any questions/concerns I would say no because to me that pain wasn’t new, and I had it in my head because I would only get the same excuses. So why beat a dead horse? Well, I went to one specialist because I was complaining a lot about memory loss. It was really bad at one point, along with stuttering and shaking. I didn’t want them to worry about my legs for one appointment but address my other issues. So I was sent to a specialist at the Glenrose Rehabilitation Hospital, because they were thinking of admitting me for brain damage - first time I heard the term referred to me and memory loss. I remember getting into the waiting room with my walker, mom and Art were with me. We sat in the waiting room for over 2 hours if not much longer. All the other patients had gone home, the secretaries had gone home. My appointment had been at 4 or 4:30pm I believe. Everything closed at 5. I think we finally got in between 6:30 and 7pm if not later. So we were not happy when we finally got in to see him. Now you must understand for a specialist to understand my medical history at that point, my hemotoligist had to send EVERYTHING to them. And my file is extremely huge, even when it's summarized. It’s about a weeks worth of reading, no exaggeration! So we enter the room, and there’s my file on the desk and it’s the first time I’ve seen all my records together in one place. It was mind boggling to me at how huge it was! So we sit down, room’s a little cramped cause the walker takes up a lot of space. I sit on the examination table, Art and Mom are seated in hard chairs. The doc sits in his chair and folds his hands and says to me.

         “Sorry for the long wait, but I just finished looking through your file, and as you can see it’s a large file, so these past couple of hours I’ve been looking through it.”

         This appointment had been booked a month before, and he just now looked at it?? Really? But the real kicker was:

         “I honestly don’t know why your here.”

         My jaw dropped and we all went on the offense considering we were already angry over the long wait.

         “I’m here because I have memory loss, and that is what you are supposed to help me with to learn to cope, to see how serious it is.” I told him.

         “Well you see I don’t deal with the brain. But I do know more about the issues you are having with your legs.” And therefore, another specialist for my legs and even there he wasn’t helpful.

         Now not only did that appointment become absolutely pointless. But with all my doctors they like to write letters to each other about me, so that everybody is in the loop. And I would get copies of these letters. Well I got the letter from this specialist and the letter was like four pages of nothing! This letter basically said stuff we already knew. But one part brought up in the letter caught my attention, in amongst all the huge words in the letter three words stuck out Grey Matter Disease I have never heard this term before, I have no idea what it means. So I am panicking! I made an appointment with my hemotologist to have this letter explained to me.

         Basically Grey Matter Disease is a fancy term for Scar Tissue on the brain. First time I found out I had scar tissue on my brain and this about a year after my stroke. I asked if it was something to be concerned about, and the doc said no, just have to do MRI’s to keep track of it cause apparently it can spread.

         As it was I was never accepted into Glenrose because I wasn’t serious enough to rate a bed. So I just had to learn how to cope with my memory loss on my own.

         Two years after my stroke, I went to another specialist and this time I went to a specialist that was an expert in brain issues, and reading MRI’s. I was never told my results of my MRI’s, I thought they were just regulation. But after the discovery of scar tissue, I got curious so I asked my doc what the results of my MRI’s were that had been taken around the time of my stroke. She told me to ask this specialist because he would be able to explain it to me better, and show me. So she made sure he had all of my MRI’s.

         I found out a lot of things that day. I was never so angry in my life by the time that appointment was over.

         I learned some techniques on how to cope with my slight memory loss. I saw my MRI’s for the first time in two years. I also learned what they meant. I also found out that day that my episode was actually three strokes, one large, two small. He also told me that the scar tissue on my brain was affecting parts of my body. The two smaller spots were affecting the part of my brain that dealt with my communication and motor skills. The large one was affecting my nervous system. I also learned that I had a damaged brain stem, and so my balance will never improve.

         I also learned for the past two years, my doctor’s have lied and kept things from me. I was furious with everybody. That poor doctor must have thought I was pissed at him, it was rather uncomfortable after a little while. Because I started crying, I was stunned. I went through a rollercoaster of emotions in those few minutes.

         To this day I am still angry over these issues. For another three years I went through pain, and continued listening to the excuses, being told to “suck it up princess”. After that appointment I didn’t see my hemotologist for two years, I was so angry with her. When I saw her again, I went in with guns ablazing, I wanted her to listen to me, I wanted her to actually understand what I was going through, that's when she sent me back to the neurologist that I saw back in 2002, which got the ball rolling for hip replacements.

         I also found out when I talked to Dr. Larratt about hip replacements, that she had known all along that crumbled joints was a possible side effect with my chemotherapy. That first day when I met her back in 2001, when she sat by my bedside and told me everything that could happen to me for side effects, she never, ever mentioned the possibility. It infuriates me to know that she knew. People ask me "so what if she told you, it wouldn't have changed anything." It would have changed the events. When the pain started, I could have asked her "could it be joints?" Or something, and when I found out it wouldn't have been as much as a shock, because I would have been able to say "well, this sucks but it was a possibility." Don't get me wrong, it would have still be one hell of a blow, but I would have been a little bit prepared. Also if I had known it was a possibility maybe it wouldn't have taken 5 years to get the replacements or to find a diagnosis.

         Unfortunately now, it’s like I have no compassion for anybody in pain. Especially those who had always given me those excuses to walk more, exercise more, it’s in your head, suck it up. Now when somebody’s in pain, I can’t help but say, “how does it feel?” or “suck it up.” Funny they don’t appreciate it at all. But there are those that I do say “I know what that’s like, it really sucks but you'll pull through.”

         So please, if somebody has an illness, unseen or otherwise, think before you speak. Because it hurts to be told that it’s all in your head, or they aren’t doing enough to get better, and it certainly doesn’t help the situation.

         Not only was there problems with doctors, but also there were issues with family, friends and the general public. There is a saying that was used a lot: "When something bad happens, you will find out who your true friends are." That really rang true for me. For some people, when there is a crisis in the family, it usually brings them closer. Mine did both. It brought me closer to my parents and some family members especially my Oma, while it tore apart the rest of the family. There are family members I haven't talked to since I got sick. A lot of my family had me buried before I even had a chance to fight and prove to them that I wasn't dying. I know my brother had problems with me because I always got the attention, even though I never wanted it or asked for it. There were times when my grandparents on my mom's side would buy me stuff and when I would ask "What about Willy?" My grandmother especially would shrug, and say "you deserve it more." That hurt me, and I knew it was very unfair to Willy. It got to the point where if my grandparents gave me something, I would hide it from Willy so it wasn't rubbed in his face.

         We lost both of my dad's parents to cancer. My Oma was diagnosed with a tumor in her stomach one year after I was diagnosed. She had been watching me fight for a year, and she was amazed by my will to fight and how strong I was, though I never thought I was that strong. She fought for seven long years before she lost her battle on December 30, 2008. When she was fighting, and I would see her we were always comparing notes on side effects. She would ask me questions about what was happening to her, and if I had that happen too. Then when I was going through my pain and hip replacements I had my Oma to bounce things off of as to what was happening. She was one of my biggest supporters for the hip replacements, and we always compared notes with that too. I found stuff out about her that nobody else knew, because she was a lady who never wanted anybody to worry about her. I think after years of suffering alone, she finally had somebody who truly understood, and she felt comfortable enough to confess what she kept from everybody. Near the end when she was in the Sturgeon Hospital in St. Albert I had taken transit to go and visit her. By that time, she was sleeping a lot to the point in the middle of a conversation she would just doze off. During our visit, she told me that she was tired and she couldn`t do it anymore. I didn`t know what to say to her as I didn`t feel it was my place to tell her that it was okay for her to stop fighting as much as I wanted to, all I was able to do was nod and give a sympathetic smile. That visit was the hardest for me as I didn`t know what to say and I had no idea that she was going to tell me that she was ready to go. I won`t regret that visit though, I`m glad I went.

         My Opa was diagnosed with Lung Cancer, when he found out he had cancer, he gave up. He lived for one and half years before he succumbed to the cancer. He passed away on February 16,2006. Unfortunately there is something I regret with my Opa, see he was the first to give up on me. Due to a few events that happened before he passed, and before he got sick, I was angry with him to the point I refused to visit him. I also had no sympathy for him when he got sick. I was disappointed because he gave up so easily when he was diagnosed, though I understood because he was in his 80s, and surviving Lung Cancer at such an age would have been impossible anyway considering the doctors had given him 6-9 months to live. The one thing I don't regret though is the day before he passed, I was able to say goodbye to him. In fact, all of us were very fortunate that we were able to say goodbye to both Oma and Opa.

         A lot of friends stopped talking to me too. A few visited me in the hospital and it was awkward. It is hard to figure out what to say to somebody who is sick, without being insulting, sympathetic, or mean. One word we heard a lot when I was sick that I got really tired of hearing was "Sorry." I hated hearing that word to a point, why are you sorry? It wasn't your fault I got sick. What I wish I did here most often was that "We are here for you." And actually mean it. I understand that I was 18, and all my friends were the same age, and it was really hard to deal with for them. So never got upset over it, though I was hoping. Two friends that did stick by me was a guy from school who lived not that far from me. He visited me quite a bit in the hospital, and when I was home, he would take me out to movies to get me out of the house. I really liked these days because I was able to forget about chemo, parents, and have a normal life for a couple of hours. The second was my best friend Raven, we had been friends since Junior High School, and she stayed by my side the whole time.

         The general public was a big problem for me. It got the point I hated going into public. In the beginning, when I first went into public was after I lost my hair, by this time chemo was really playing on my energy level, and I had lost a lot of weight. I went to the local mall with my mom, she suggested getting a wheelchair from customer service so that I could save my energy. I hated using wheelchairs, cause I didn't feel that I needed one. In my head, I was 18, young and quite capable of walking. In the wheelchair, I was covered up with blankets and a sweater, cause I was always cold. I also wore a hat or bandana to cover my bald head. I wore sunglasses because some of the medications I was taking made me sensitive to light. On top of all that I wore a surgical mask over my mouth and nose when I was freshly released from the hospital because my immune system was so low that the mask was to help protect me from catching any infections that maybe floating through the air. People did everything from pulling their small children away as fast as possible, and I don't mean to make room for us to pass, no I mean opposite end of the mall in the opposite direction, looking over their shoulders to make sure we didn't follow them. I've had comments behind my back that were rude and mean, because apparently when you're in a wheelchair that means your ears don't work either.

         I think what disappointed me the most was parents. I've heard and seen children point and ask questions of their parents like "What's wrong with him?" Yes, I was called a him, and even an it sometimes because being as covered up as I was, it was hard to tell I was a girl. "Why is he like that?". Children are very curious, and in my opinion parents should be as honest as appropriate for their age group. Instead I heard, "I don't know what's wrong with it, just stay away", or "I don't care what's wrong with it, come on hurry up, we don't want what it has." This was said to a little boy, who had to be maybe 3, and the parent was pulling him away so fast his little legs almost couldn't keep up. I also heard. "Don't touch it, it's probably contagious." All of this angered me, and made me feel like a monster, but I felt bad for the kids because they only learned to stay away from people in wheelchairs, or who were ill with non-contagious illnesses.

         I also held the opinion that if you want to know what's wrong, then please ask. I was always open about what I was going through, I was happy to explain, because that erased all opportunities for people to jump to conclusions. So I give kudos to a mother that was in line behind my mom, grandmother and I at Walmart. She had a little girl, I can't remember how old the little girl was but she was no older than 6. I heard the child ask her mom "What's wrong with him?", I closed my eyes and thought, here we go. Instead her mom said "Well, he is probably very sick." The girl continued with her questions then. "Why does he have a mask?", her mom replied with, "Maybe because the mask is to keep us from making him sicker." I smiled, because finally there was a parent who had the patience to actually take the time and answer her daughter seriously. My grandma took that opportunity to turn around and explain that I was her granddaughter and that I had cancer. She explained why I had the sunglasses, mask and hat on, and that the little girl could come and say hi if she wanted to, that I wouldn't bite. Unfortunately, when the little girl peeked around the chair and saw me, she ran to her mom and hid. I can imagine I looked pretty scary to a small child, so I just shrugged it off, though it still hurt deep down. The mother said to the girl then, "it's all right sweetie, but she is just like the rest of us, just sick." The eased the pain a little. I wish and hope there are more parents out there like that mother. I hope that parents will take her example and apply it when they come to raising their own children.

Chapter Fifteen - Things That Got Me Through