 My story really begins in 1964 when my own mother was diagnosed with breast cancer. At that time cancer was something you didn't want the world to know about. First of all my mother who was a very complicated introverted woman took the decision to conceal the lump she found in her breast. But she decided to tell me in the kitchen one morning.
"I found a lump in my breast," she said.
"Well you have to tell daddy," I stated.
"If you tell daddy Ill never speak to you again," demanded my mother. Her reply still mystifies me.
Well I didn't tell daddy not realizing how serious this was. Then one day my parents announced that my mother had breast cancer and it was in her bones too. I didn't really understand what this meant in terms of survival, but it was obviously a very serious situation. My father learned from other friends that my mother told about the lump. He felt totally betrayed. I never told him that she told me and think that would have been too much for him. So my poor father who absolutely adored her felt betrayed. He was trying to be compassionate but felt that he had dedicated his life to his family, especially my mother who might die.
I was 18 and my sister Diane 15 years old. This was a difficult time for all of us because my mother was also an alcoholic, smoked cigarettes and in a lot of pain for 3 years while we watched her slowly fade away as it spread to her liver. She didn't last long after that.
My mom was the first married in her family with 6 siblings where I was the oldest cousin of 23 grandchildren. Of such a large family, my mom was the first person in the family to get sick and actually die. After her burial, my father began to act out starting to date the female lawyer he went to settle the estate. Diane and I were kind of left to our own devices. My mother was a wonderful cook—Classic French Cuisine. Diane and I didn't know how to boil an egg so we took her big thick Larousse Gastronomique and learned how to cook, hosting elaborate dinner parties for my father and his friends. We at least had some measure of moving forward and were appreciated for our newfound talents in the kitchen. That part of the story is a story in itself but now I'll flash forward to my own cancer diagnosis.
In 1983, I happily married my soul mate, with a career in advertising, and felt happy with my life. Although having regular mammograms, I find a lump in 1990. I'm thinking that I was so opposite to my mother in personality and looks; instead, I definitely feel like a chip off my father's block. I didn't relate to my mother's cancer at all. But I felt a lump. My doctor does needle biopsies that come back negative. With the lump still there, a biopsy is scheduled. When we arrive at the hospital for the procedure, my doctor says, "I really think we are doing this for nothing." He doesn't do the test and sends me home. Part of me is relieved because I'm scared to death of what a biopsy involves. But part of me doesn't feel quite right about it.
So another year goes by and my next mammogram shows that "crab" shape very clearly. All hell breaks lose but my doctor is just leaving for a vacation with his family. He passes me off onto a much younger and very skilled young cancer surgeon. It's now October 1994— Breast Cancer Awareness Month. I'm always right up with the latest trends and it doesn't seem like an accident that I'm diagnosed when all they're talking about is breast cancer in the magazines and in the media. I'm actually glad to be rid of this doctor who obviously wasn't on top of things. My husband wants to sue him or tell him off. I just want to move forward because that's what I do. No point in wasting energy on things you cannot change.
So a lumpectomy is done but it turns out they can't get a clean margin so I have to go back and have a mastectomy. I tell my surgeon who's top notch that I don't plan to have reconstruction so make it neat please and try not to cut that nerve that will make my underarm numb. They take out 13 lymph nodes all clean. Although my tumor is a bit larger than a Stage 1, my surgeon tells me I am stage 1 because of all the clear lymph nodes.
I become obsessed with survival and google survival rates and it looks pretty good but statistically cases exist going from 0 to 10 really quickly. I'm uncertain of my future. Dealing with all this stuff, I'm reading Susan Love's book. It scares the hell out of me, but I'm a seeker of truth and I want to know everything. I am given a bunch of names of women who have gone through what I'm going through. I call every single one because I want to know their story and how they are doing now. It is encouraging.
It is now November 1994 and I have chemo ahead of me. I have always eaten healthy and now I'm going to pour all this poison into my system. It was really difficult for me to passively sit in that chair and let it all happen. Radiation is not on the list of recommendations so around Christmas I start my chemo, Adriamycin. I am now educating myself about all things chemo, making notes, checking to make sure I'm getting the dose I'm supposed to get. I am really involved. I have a fantastic nurse the first time who's a bit punk with Doc Martin boots and I feel more empowered by her than some of the other nurses who are more motherly. Probably because my mother wasn't motherly. I don't really respond to that in women preferring stronger women who talk straight to you.
I'm sick as a dog after each treatment even with those bulletproof anti-nausea pills but recover in a few days. The following three weeks are pretty much fine and I'm able to do everything. I had discussed with my medical oncologist exactly what dose I would be getting. I call the pharmacy at the hospital the day before each treatment to make sure my dose is correct. The last dose is higher than we discussed so I try to reach my Medical Oncologist but he isn't returning my call. I tell them I'm not coming in till this is resolved. I have become a royal pain in the butt but suddenly I get a call from the pharmacy to tell me the proper dose will be administered and now I realize that they can make mistakes so I am super vigilant about e v e r y t h i n g from that day forward. My Oncologist never mentions it again. I actually didn't like this guy so was happy to see the end of him.
I am bald as a billiard but choose to wear hats hating the fakeness of a wig. I'm a natural girl—actually I'm 49 when my chemo is done and my menstrual cycle stopped for good during the four rounds of chemo. So I'm into hot flashes and bitchy behavior but I'm a warrior and I just move on. I write poetry about it and everyone admires my spunk. I'm really just being who I always have been but am now placed on a bit of a pedestal and have many admirers and people supporting me. I think because I wasn't a baby about the whole thing and didn't moan and cry it was easier for people to deal with me. I was still Barbara but now I am "amazing." There have got to be some plusses to this whole thing and my status as a human being went up dramatically—nearly celebrity status. I'm a very high energy person, curious about everything and I continue to wear people out even though they expect me to slow down. So life goes on.
I have scans, x-rays and blood tests for the allotted 5 years. I'm put on Tamoxifen even though I'm estrogen negative because they don't have other drugs to give me but I have a reaction to it so I stop. My tumor proves to be of the slow growing variety and I'm happy about that. But I think it was silently spreading very slowly over the next 11 years unbeknownst to me. My husband notices that my sternum looks a bit raised. We bring it up at my oncologist surgeon and he doesn't feel anything is unusual. But I do have an uneasy feeling and sort of push it back in my mind because the thought of a recurrence is just too terrifying to consider.
Then one day I'm playing with my 5-year old nephew. I grab a branch on a tree and pull with my full weight. Afterwards I have a big pain in my chest that isn't going away. I'm having trouble breathing so I know its time to go back and investigate.
I'm sent for a bone scan, a lung scan—the works and we go back for the appointment for the results. My doctor is hemming and hawing. I just know it isn't good so I finally say, "It isnt good news is it?" He tells me I have 5 small tumors in my lungs and there's activity showing on my sternum. Dave and I both have a kind of out of body experience receiving this devastating news because now I know I'm going to die and wonder will it be soon? Our lives take a wild turn and now we're into the really serious stuff. We walk out of there in a total haze, take some books from the Hope & Cope department in oncology and go home to find out what were up against.
I'm now passed off to another Medical Oncologist and know that life will never be the same again. I'm in for a very rocky ride. The statistics look grim. I wanted to live to 100. I love life so much and I'm only 59. It's a bit of a long shot, but in my usual style I don't dwell on the negative and just move forward. Dave isn't in such great shape. My friends and family are in shock too because they see me as indestructible.
So back into chemo and bald head status once again—a true marker that you are one of the walking dead. Out come the baseball caps and the bandanas to hide my bald head below the cap. Now I'm super Hero with people saying, "My God she's amazing—she doesn't feel sorry for herself, she's still doing everything and never a complaint." Quite frankly the worst thing I can think of is that someone should pity me. I go through 6 rounds of Taxotere and the scans show nothing much has changed. "What to do next?" I wonder.
A good friend who lives out in Victoria BC tells me that she remembers an article in their local paper about a couple who documented their battle with the husband's lung cancer and they had some cutting edge treatment in Germany. She gets their name and I call them speaking to the wife who tells me about a Dr. Thomas Nesselhut in Duderstadt, Germany who prepared vaccines from her husbands blood and tumor material. They feel it is extending his life greatly. They are real warriors too and turned their treatments in Germany into wonderful vacations where they visited Dresden and Leipzig, going to operas and had a wonderful time in spite of the reason they were in Germany in the first place.
My Montreal oncologist is a brilliant man who's on top of everything. He doesn't scoff at me, expresses curiosity about the whole thing, and I feel he is supporting me in my quest. I need to provide some tumor material that has to be sent to Germany on dry ice ahead of time. My ex surgeon/oncologist makes sure I have this, probably feeling badly that he didn't act more quickly when Dave kept telling him my sternum looked raised.
So off we go to Germany in January 2006. Duderstadt is an ancient walled town. If you put your finger right in the middle of a map of Germany, that's Duderstadt about a mile from the old East/West border. Most of the people at this clinic are from the old East side, much more agreeable and soft spoken than what I had experienced in Bavaria, and some of the other dealings we have had over the years with German businessmen. These people are happy and gentle and kind. The clinic although in a very historical town in an old building is spotless and the staff very professional.
They have to hook me up to a machine to circulate my blood and get the dendritic cells, natural killer cells and other things. But my veins are very thin and it isn't working. So they go into my groin and hit an artery. Apparently the blood shot out like a fire hydrant that I missed thank goodness. Suddenly I have three people leaning on me and trying to stop the blood. They succeed and Dave is kind of wobbly. We give up for that day and they get in an anesthesiologist to insert a catheter into my jugular the next day. I am determined to get the job done feeling this is my only chance. We succeed and even so I have to hold my neck in a particular position or the machine starts beeping and the blood stops flowing. We finally get it done. I leave the hospital looking like I've been in a machine gun shootout with bandages all over the place where they tried to get blood. But I'm just relieved its over. They don't need to see me for a week so we have plans to tour around. I never miss an opportunity for traveling.
We are writing a blog with photos and sending a transmission back to all our friends and family. They can see we are having a lot of fun and can't believe it. Everyone is happy because we're happy. Until we decide that we want to go to Buckenwald—an old concentration camp. Everyone freaks out because they think I should not be doing anything unpleasant but I can handle anything and I do.
It's a very windy day. We get there and it's extra spooky because of the wild weather but we want to see everything anyway. I pick up two stones from the parade ground to bring home as a reminder. We visit some of the exhibits of horror and then they announce because of the high winds everyone has to leave. We had to drive through a forest of Beech trees that are swaying in the high winds. You can just imagine the whole scene that went on there during the Nazi regime. There are also groups of German school children touring as Germany has a program to educate their children about the events that happened in their own country.
There are windmills all over Germany for power and they are all shut down due to the high winds. Now our friends back home are worried about us being in these high winds. The next day the weather improves and we're off to visit Dresden and Leipzig before heading back to the clinic for my first vaccine.
Dr. Nesselhut tells me that I have a lot of NKC (natural killer cells) that they rarely find in a woman of my age who also has cancer. So I know my body is still humming like a little machine and I feel more confident about my outcome in general. I get the shots and we head back to Frankfurt for our flight out in a few days. I have a raging fever in the car and I'm bundled up with the heat on full blast. Dave is sweating like crazy. The fever passes in the morning. We spend the day touring and enjoying the mild unusual January weather in some small towns on the Rhine before flying back home to Montreal.
All my vaccines will now be given in Manhattan at an associate of Dr. Nesselhut. We go there once a month for about a total of 9 rounds. I started doing it once a month 4 times and then started extending the time between vaccines.
Meantime I wasn't taking any other chemo. When a scan revealed I had some progression in my bones and lungs, I added Xeloda to the mix. Eventually we gave up on the vaccines as nothing lasts forever. It was also quite costly but overall we felt it was a good decision and has prolonged my life.
Around this time I go to see a Vietnamese Naturopath who has had some success with cancer patients. She puts me on a very strict diet as well as a long list of supplements. I find it very difficult and sometimes just go to bed because I am so bored and feeling deprived. I stay on this for about a year but just can't maintain all the restrictions so now do a modified version of it. Keeping some of the good things and relaxing about other things. I never was a very disciplined person and this is just too radical for me.
I stayed on Xeloda for three years. Again I managed my own case and the dose they wanted me to take was so powerful that I felt lousy all the time and my feet and hands were hurting a lot. And because it's an oral chemo I was able to mix the 500 mg pills and the 150 mg pills and eventually found my comfort level. I also asked if I could do one week on and one week off as some of the other big cancer centers were doing instead of two weeks on and one week off. It was just too powerful. My Montreal medical oncologist would now ask me what dose I was taking and he gave me the lowest number I could go without it jeopardizing my outcome so he was working with me. And I am so thankful that not only is he brilliant but he is not closed minded.
Two years ago in 2009 while still on Xeloda I had a routine lung scan and they discovered that I had water on my lung. My oncologist sent me to a surgeon and I was admitted to the hospital where I had surgery to insert a tube and then spent a week hooked up to suction to remove the water. I really thought I was a goner this time. The food was so unappealing that I pretty well stopped eating except for breakfast and the fruit cups and juice but wasn’t telling anyone until they realized I was losing weight – about a pound a day. At that point my husband and mother-in-law were bringing me tasty things to eat but my appetite had diminished so much that I had trouble getting it going again. When I got out 8 days later, I had lost 10 lbs and had trouble eating for about a month. It’s as if I had shut down the hunger mechanism. We went on a 5 day vacation to the Maine coast and it was all the wonderful dockside food that got me eating again. Haddock dinners, lobster, clam chowder – who could pass up this delicious food! I recovered and thankfully the water never came back. When I went to have a follow up with the surgeon, he started gingerly telling me that they found cancer in my lungs. I assured him that I already knew this and that I was just living my life and doing all the things that make me happy. He looked at me in shock and said, "You could live to 100." I don’t think he was used to dealing with someone who accepted their situation before. Maybe most of his patients are hearing their diagnosis for the first time, but I already knew what was going on for so many years that he wasn’t breaking any bad news to me. The best news is that now over 2 years have gone by and I’m breathing fine, no coughing, and my lung capacity has not diminished.
After 2.5 years there was progression again and some bone pain so I was switched to Femara for a year. I had another event recently where my sacrum developed holes and started pressing on a large nerve in my pelvis. I became numb in a narrow strip from my pubic bone to my anus and couldnt pass stool easily or urinate without difficulty.
A visit to the ER and lots of tests over one day and an MRI revealed what was going on and now I'm into 5 days high dose radiation on my sacrum. As of July 2011, it's about 2 months since that event, and although I still don't have all the feeling back, I'm pretty much back to normal. I am now on Prolia—an injection once a month to build up bone and Aromasin— another oral chemo and Dexamethathasone, a steroid. Both of the first two drugs have hair loss side effects so I decided I didn't want to look like a cancer patient any more and go for a very attractive blond glam wig. And as an added bonus the steroid has given me the confidence of a celebrity and the creativity of a Picasso so I'm very very happy and talkative and my husband starts calling me Lady Bla Bla because I have a motor mouth and can't shut up. Everything is amazing to me and I start writing and doing my art and playing my guitar and writing new songs and life is great except I am only sleeping a few hours a night and still have boundless energy, getting up in the middle of the night to reorganize my cupboard. I am focused, productive, and happy as can be but getting quite worn out.
I am now in the process of weaning myself off these nasty little pills. I take 1/8 of a 4 mg pill and still can't go a day with nothing or I lose all my energy. I think I am going to have to end up just licking one for a month or so at the end.
My oncologist doesn't seem to think I am in any grave danger. I have mets in just about every vertebrae in my spine. But because I am not a person who has ever had a headache and rarely suffers from pain I am still pain free much to the amazement of my oncologist and everyone else.
I lead a pretty normal life, but my legs are unsteady also due to the steroids. I'm a bit wobbly and if I crouch down I can't get up easily. It's a bit of a nuisance but I've been assured it will pass when I get off those little white pills.
I truly believe my attitude towards my disease has allowed me to live longer and have a quality of life that I enjoy. Those who care about me worry I'm sure but my attitude allows them to treat me pretty normally as well although they are always offering help. I refuse because I really am not an invalid and very independent. My mind tells my body all is well and I am healthy. For me, cancer is like hosting a bad tenant and I try like crazy to oust this unwelcome guest using every trick I can find. I still want to live to 100. Who knows, maybe I will.
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