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Temper Tantrum
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News from October 2001

It is Breast Cancer Awareness Month. It is also my second year anniversary of the end of my breast cancer treatments. I have just finished reading about a woman who has survived three re-occurrences of this horrible disease and I am left wondering why I still feel so sorry for myself.
 
Often I think of my adventure with cancer and try to figure out just how I feel about it. This is no small task and usually leaves me feeling like I am thinking in circles. This month I have actually been trying to remember everything I can about that year but it hasn't been easy. I have spent the last two years trying to forget about it. I guess I figure by trying to remember it I might get my feelings about it straight and feel like I can get on with my life. I feel like my life has been on hold for three years and I can't seem to get it moving. I feel like I have been hiding behind something and can't put my finger on exactly what that something is. Maybe if I can pull it all up again I can make it real, I will be able to put this behind me. Maybe I need to remember in order to find myself again. Maybe I need to feel it so I can cry.
 
I remember the diagnosis; sitting in my surgeon's office as she gently tells me the words I am unprepared to hear. A family doctor, a mammogram technician, an ultrasound technician and a general surgeon have all told me it is not cancer. Why is this woman telling me differently? I should be getting advice about having a benign tumor removed; not being told that an Oncology Nurse wants to speak to me. As I wait for the nurse to arrive I pick up a magazine and begin to read. A bizarre reaction I know but I guess it was still so unreal that I couldn't give any actual weight to it.
 
The Oncology Nurse arrives and begins to tell me about clinical trials. These trials include different kinds of chemotherapy, radiaton and surgery. Chemotherapy? Radiation? I begin to realize what I am up against and I begin to break down. I am only 36! I have two young sons. I have a new relationship. Why now? I feel embarrassed about crying in front of these two women and try to hold it together. As I look back at it I wonder why. Don't I have every right to scream and throw some stuff around? I don't know it yet but this is the beginning of a pattern that will stay with me through this horrible ride.
 
I manage to reach my car without the help of Kleenex. I decide that driving home at this point might not be such a good idea. My boyfriend's place of work is about 15 minutes from here. I drive through a mist of tears but manage to hold on. I park behind the building to wait for him. The wait feels like hours and I am torn between sitting here and waiting or running in there and demanding that he punch the time clock right now and leave. I wait.
 
He finally emerges from the door and looks toward my car with a puzzled look on his face, not expecting to see me here. I can feel my face contort with the effort to hold it together. "Hi", he says; probably seeing the pained look on my face. "Its Cancer" is all I can say without losing control completely. I don't remember what he said next; I know that I was trying not to hear his words; all I wanted was for him to take me home. I agreed to follow him. I might be able to stay on the road if I follow that big white Jeep. I told him that I needed something to guide me home – what an understatement!
 
At home Dave and I sat down immediately and started talking. I don't even remember where the kids were; isn't that sad? I kept a stiff upper lip as I told him the diagnosis. Telling him about the Clinical Trials helped me focus on something other than the impending doom I felt pressing on my shoulders. I show him some literature about the trials. I tell him we have time to think it over and need to read all this carefully. As we read the descriptions of the different trials I may receive he became adamant that I am not going to try ANY of these! Each description carried a list of possible side effects that were just too horrible to imagine. My Trusty White Knight in Shining Armour would have me spared from these. As I was telling him that I HAD to have the chemotherapy and there would be evil side effects to all of them I felt like I was talking about someone else. My too logical brain was instructing me to put one foot in front of the other, don't look ahead, don't look back, just keep moving without thinking, without feeling.
 
We decided to go for the Trials for one single selfish reason – I would have a nurse that would be with me every step of the way. All the nurses at Credit Valley turned out to be fabulous but I liked the idea of having one person to ask questions, on person who knew my history, one person I could call and someone to hold my hand. It seemed more personal, if you can get personal with cancer treatment. I am happy that women behind me on this road will benefit but I eriously was not thinking that at the time.
 
I told my Father, then my Mom, then my brother and work mates. This had to be the hardest part to all of this – surely. Some cried, some carried shock on their faces for a few days and some looked like I had just told them that I was having pizza for lunch. I began to learn that everyone has his or her own way of dealing with such news and no one quite knows how to react around you. I wanted to cry with them or scream but I maintained control. The ones that reached out to me were the hardest. I wanted to fall into their arms and cry. I wanted someone to make sure I didn't hurt myself while I lost control and broke things. But I felt like if I didn't hold it together I would fall to pieces like Humpty Dumpty and I wasn't sure anyone could put me back together again. I let Dave tell his family and some friends. I just couldn't face telling anyone else.
 
A few days later I scheduled for the first round of test. I felt like I'd had every test known to man. I was scanned, injected, poked and prodded. The test I liked the best involved a person dressed in lead clothing and a lead box that contained an injection. Wait just one minute here – this stuff is so dangerous that you protect yourself with a lead suit and you are going to put that directly into my veins??? There was a dignity to it all and the technicians were friendly and warm but I still felt like I was a specimen. My Mom was there for some of it. Dave was there for most of it. My Clinical Trials Nurse was there for all of it.
 
One test was a biopsy that was supposed to be more accurate than the needle biopsy I had had in the surgeon's office. I don't know why I help out hope; I guess it's just my nature. If I had have been smart I would have expected the worst but I didn't. There was still a chance that the needle biopsy was wrong and this could all be a big mistake. I got the results two days later – Stage Three Breast Cancer.
 
Dave was on nights when I got the news and was sleeping. I crawled into bed with him and told him what the nurse had told me. I started to cry and he tried to hold me. I know if I let him cradle me I would have cried an ocean. I didn't think I would be able to stop if I got started so I got back out of bed and tried to find that trusty control again. Why didn't I just let the tears come? Why didn't I let the love of my life comfort me? It was just too hard. Some call me stubborn; I guess I am but that wasn't the issue here. I felt that this was just too important; I had to remain sensible. I wanted to face this head on. I wanted to hide.
 
Within weeks I found out what Trial I was to be in. Eight rounds of Chemotherapy, Tamoxifen, a Lumpectomy, Node Harvest and 25 rounds of radiation. I can do this right? Don't think about it – one foot in front of the other…
 
Before my first round I read everything I could get my hands on. I tried to prepare for all the side effects you could possibly imagine. I bought Exlax and Imodium. I bought yogurt and soups. I made meals that I could freeze and reheat. I cleared my schedule as best I could. I cleaned the house and got all the laundry done. I cleared my desk at work. Most importantly I tried to prepare my boys.
 
Chemotherapy was hell. There are no words to describe what it is like. If you've never been there you'll never understand the physical, emotional and spiritual hell you go through. I remember thinking of all the times I thought people exaggerated their health problems – now I know better!
 
All the rare side effect seemed to line up to have a turn at me. My life saving white counts seemed non-existent at time and I landed in the hospital twice. Antibiotics were a staple. My whole life turned upside down and I didn't think I'd ever feel normal again. It's a very lonely place to be. I have lost a few family members and a few young friends to this disease. It is a battle I am prepared to win but the emories of those I have lost are so clear in my mind.
 
Typical type A personality, I tried to work and do all the same stuff I had done before. I got up everyday and was to work by 6:30 or 7:00 am. My employer was an absolute star in all of this! I took the chemo day off every three weeks. I had a nap in the afternoon everyday for an hour. I went to hockey games armed with antibacterial creams and wipes to avoid picking up a cold that could land me in the hospital again. My sister in-law made a meal and left it on my doorstep each chemo day so we wouldn't have to worry about feeding the family. Family from all over the place called and sent cards. The people at work avoided coming close to me if they were sick and wiped down doorknobs and telephones regularly. I managed to keep this pace up until the final rounds of chemo. The side effects were taking their toll on my body and I just couldn't keep up.
 
It was actually funny to me how people responded to me while I was sick. I can't tell you how many people told me how good I looked or that I had a great attitude. I wanted to scream at them that I didn't see myself in the mirror anymore. I wanted to tell them how sick I felt and how I wanted to stay in bed all day. I wanted to yell that my attitude was fake and I didn't feel like I had a choice. I knew they were just trying there best to help me through this. After a while all of this became humorous and I am sure people thought I was losing my nuts!
 
I read on the Internet about a lady who told her husband that if you had a dog that was feeling this badly you would put the poor thing out of it's misery. Her husband hid all the drugs in the house. I thought this was pretty funny at the time. I guess I really was a bit off my rocker at this point.
 
We planned surgery within weeks of my last round of chemo. Seemed like a great idea at the time. My counts would be up enough to avoid infection and I would be free of cancer at last. I didn't realize how hard my body had taken the chemo. I didn't realize that I wasn't even close to feeling strong enough for surgery. Still trying to push my way thought this like a bull.
 
Great news from the surgeon; the tumor had shrunk from the size of a golf ball to the size of a pea from all the chemo and it was removed with clean margins. Clean margins simply mean that she got it all. It's surprising how much of the medical lingo you pick up. My lymph nodes were also clear and my surgeon congratulated me. The incision was healing slowly but nicely and I had a home care nurse to help with the drain, dressing and exercises. I was feeling on top of the world. Only 25 days of radiation to get through and I was back to normal.
 
Radiation started within weeks of surgery. Again I didn't realize my fatigued and battle weary body weren’t quite ready for this. I was still putting one foot in front of the other. Within a week of starting radiation I had a bad infection in the incision and was once again put on antibiotics. I didn’t want them to stop the radiation because I felt that the effectiveness could be compromised. Keep going, don’t stop…
 
I had someone with me for the first week of radiation and for the last two weeks. I managed to drive the 40 minutes one way on my own for most of it and was pretty darn proud of myself. Idiot! During the start of week four I almost rear-ended a truck that pulled out in front of me. I spent the rest of the trip trying to be hyper vigilant. I realized that I had no business driving. Now, the guy who I nearly hit had no business pulling out in front of me either but the fact remains that I was too tired to drive. My Mom drove me for the rest of the treatments.
 
It wasn't till the end of radiation that the effects became apparent. I really thought that I had gotten through this unscathed until the third week! It’s like sunburn, only 100% worse. Wearing a bra was horrible; not wearing a bra was horrible. I went to work in a loose fitting sports bra and sweatshirts. I couldn’t believe that we could inflict so much damage and the body would repair itself.
 
I finally took a weeks vacation time at the end of the radiation. I went out to lunch with my Mom after my last round. I remember thinking – this is it! Finally free to be normal. I could put this year behind me and get back to life. I had just moved into my first new house and was looking forward to life with Dave and all the plans we had made. My kids seemed not too worse for wear after all of this. My family, friends and work mates had all rallied around me and I was feeling wealthy and blessed. I had a new sense of life and what I wanted out of it. Oh… look out, here I come world!
 
The fatigue hit me like a ton of bricks at the end of that week off. Didn’t expect that one! I guess my bull in a china shop attitude was finally catching up to me. The first few months were harder than I thought they would be. I was still dealing with side effects. I could not do too much or I was left feeling exhausted and my feet and calves were constantly sore. I willed myself to keep moving. I kept thinking that this will pass. I kept myself moving with sheer determination and pride.
 
The chemo sent me into menopause. At first I was happy about it. Great – no more periods and all the fun stuff that goes with it. No more fear of pregnancy. Wait! I feel like something has been stolen from me! Where is my youth? Why didn’t I have more children? How can I be healthy if I am not menstruating? I feel saddened by the loss. My Gynecologist is now keeping close tabs on me. It seems there are side effect associated with early menopause. More appointments and more tests. Great… side effect from the side effects!
 
At first it felt great not to have appointments every three weeks. It felt great to have my time back. Then I was over come with an irrational fear; if no one is looking at me every few weeks what if it comes back? What if I don’t catch it in time?
 
There was this pain in my back so severe that I couldn’t take a full breath. I went to see my family doctor who ordered some tests just because of the panic on my face, I am sure. The tests were clear – no explanations for the pain.
 
I had some pain in my ovary area. More tests. Would I ever be able to react normally to pain?
 
Within a year life for everyone else seemed to return to normal. People were treating me as if nothing had ever happened. What they didn’t know is that I was still in pain, fatigue was a constant companion and I was beginning to doubt that I would ever return to life as usual. I wanted to tell everyone that all was not well. How could I forget and carry on when I was still feeling this way? I am sure they were thinking – you’re breathing aren’t you? It’s not enough I think. No one understood. Some tried. I was still in a lonely place. I would cry when I was alone, usually while in the bathtub. I began to realize that crying was good for the soul. It made me feel alive. I know that I was feeling sorry for myself but it felt good to let some of it surface. I started to think that if I had have cried more I would feel better now.
 
I found an Internet support group around the same time as I started radiation. It was called Breast Cancer Survivors and Friends Forum and was running on the Delphi site. I hadn’t really gotten into it until all my treatments were done and I felt like I had time to commit to the group. I now wish I had have been in there more often. These ladies were all at different stages of treatment. They were warm and welcoming and I always felt like I’d had a coffee with old friends by the time I signed off for the day. I compared notes, compared feelings and vented my frustration at not feeling better yet. We talked about family, support, peers at work and husbands. I don’t know how many times I was touched in some way by these wonderful ladies. I had finally found people who understood!
 
I begin to doubt all the things that were important to me before cancer. My job is no longer fulfilling; more like a means to support the life I want. People are now my most important asset and where I want to spend my precious energy. I wake up every morning and thank God I am breathing. Where are all the plans I had? Where is the ambition? Where did that type A personality go that I hid behind so well? I thought that all of the luster was gone from my life. But it’s not gone, its just changed form. It’s gentler now, milder, sweeter and slower. Life has become something else and there are no words for it. It’s a feeling that permeates my entire being. It feels good most days.
 
It’s been two years since my last radiation treatment. My doctors and surgeon give me a clean bill of health every six months or so. I have relaxed a bit with the fear of every pain but it is still there lurking in the back of my mind. I do more of the things that I love to do. I take more time to do nothing. I still nap mid day and am thankful that I have a boss that allows the flexible hours. My feet still hurt when I do too much. Dave is always telling me to take it easy. I am still tired most days. But I am alive.
 
I don’t have a "normal" to go back to. I should have seen that the minute I started this odyssey. Life has forever changed, sometimes good and sometimes bad. I still look in the mirror and wonder where I went. I know I am in there somewhere. How do I find her again? I am filled with conflicting feelings every minute of every day. I feel grateful that I didn’t loose my breast. I still want to scream and throw stuff. I want to stomp my sore feet and have a good temper tantrum. I still morn the loss of innocence and of the woman I once was.
 
But every morning I breathe and life is still good.