By Trisha Tester,
(A Ten Year IBC Survivor)
I am smack dab in the middle of a mental wrestling match with myself. I keep trying “reality” on for size, and it just doesn’t feel right. The fit is all wrong. I am dying of cancer. At least that’s what the doctors tell me, and they are pretty smart people who know a great deal about this subject. They are very sure about it – so it must be true. But it just can’t be. I KNOW it can’t be. I’m going to live to be a cranky little old lady. (well, maybe not so little …) Besides, I feel so permanent!
This cancer journey has been very much like an exercise in surrealism. There are times I feel like a sleepwalker – I go to my appointed treatments. I take my pills (mostly on time.) I smile and say, “Doing well, thank you. I’m glad for every day I wake up.” Then I wait to wake up from this very strange dream. But I keep waking up within the dream – it has been going on for over 9 years now, in one form or another.
When I was diagnosed with inflammatory breast cancer, I was totally devastated (who wouldn’t be?). Given a 30-40% chance of living 5 years, I was out of control … raging with a horrible temper, nonstop. One day I realized that one of two things was going to happen. I was either going to live or die. If I died, I had better decide how I wanted my children (who were 5 and 6) to remember me. Of course, I wanted them to remember a perfect mom! So I figured I better clean up my attitude and be as much ME as I could, for as long as I could. And if I lived through it, what a nasty use of horrible, negative energy that would be. Plus, if I could somehow manage to turn things around to be more pleasant, it just might help tip the balance of cosmic forces, to help me live. So I became an intentional Pollyanna and I learned an important lesson; it really does feel better to be happy than horrid.
I found it is possible to be happy under the most dismal circumstances. This is not to say that I am glad to be on this road. It’s rocky and uphill, and it hurts my feet. But I would swear that the flowers are prettier and the breeze is more refreshing. The grass might be greener on another path, but this is the one I am on and I don’t see a detour to an easier avenue. So it’s up to me to appreciate what I’ve got, and one thing is for sure – the other people walking with me are totally fabulous. When I tire and need to take a break, one of my fellow travelers sits down with me. And then gives me a hand up while I stumble back to my feet.
I don’t know why I got cancer. But I have it. Even so, I have a whole lot of life left in me. And a whole lot of love left for my family. It’s not up to me to second-guess the “why” of it – I don’t expect to learn the answer in this life anyway. And even if it does end up to be a lot shorter than I expected, it has been a darn fine life. And I wouldn’t trade it.
The Specifics of My Battle:
In January 1992, I lost my darling mother to cancer. In March 1992, there was a breast cancer program on TV – stating that women should have their baseline mammogram at age 35. That seemed easy enough. As I was 35 at the time, I had it done. The next week, I called my doctor’s office. “Everything was fine,” they said, but I should have another done in 6 months as there was an area that was hard to read.
I marked my calendar and went on my way. Soon after, I went to the doctor about something unrelated and I asked him to look at my breast as it had a red patch. I wasn’t too worried about it – after all, I had just had a clear mammogram. He prescribed an antibiotic and told me it would feel much better soon. He didn’t seem to hear me when I told him it didn’t hurt at all …
One round of antibiotics seemed to lighten up the color but it was not gone. So, we hit it again. At the end of the second round of antibiotics, he sent me to another doctor. I thought I was going to a dermatologist, but when I got there, I discovered he was a surgeon! He took one look at me and just like in the cartoons – the color drained from his face. He told me not to plan anything for the day because I would be having a biopsy. I protested but he told me he wouldn’t let me out of his office, except to go straight to the hospital for the biopsy … that if I, in fact, had what he thought I had, every day counted. THEN I started to get scared … of course, I did have what he thought I had, and the battle began …
We started with a chemo regimen that was so complicated that I can’t even remember it all. It was suspended twice – once for pneumonia and once for pulmonary emboli. Finally, we finished. After a short recovery period, I had my mastectomy. Unfortunately, pathology showed microscopic bits of cancer remained throughout my breast and in most of my lymph nodes. Still I believed that if I could be one of the three in a hundred to get this dreaded form of cancer, I could be one of the 30 in a hundred to “beat it.” After surgery, I had two rounds of high-dose chemo followed by 6 weeks of radiation. Finally, I thought, I was done. Now all I had to do was wait for time to prove me right.
As the months clicked on and I continued to be cancer-free, even my doctor started to believe me. I made it as far as 5 years and 3 months of remission. So, according to the folks who do statistics and who seem to think there is something magical about the 5-year mark, I was right … I had “beat the cancer.” Then I started to get winded easily and off to the doctor I ran. X-rays that day, MRI the next, appointment with the surgeon the next, and by the 4th day, I had my biopsy and knew the cancer was back in the lymph nodes in my chest. In went the port and in went the Taxol. Within weeks, Herceptin was approved that was added with great hopes.
I developed another cough several months later. During the course of treatment, we discovered that my left diaphragm was no longer working. I lost the power of my voice and sounded like I was doing a bad Marilyn Monroe imitation – my left vocal chords were paralyzed. What’s worse, if I tried to put some volume into my voice, I sounded like Mickey Mouse that made it nearly impossible to holler at my kids! After a year of that wimpy voice, I had an operation that gave me slightly more volume and a somewhat more normal-sounding voice. I find it very interesting, though, that I resent the loss of my voice much more than the loss of my breast. The breast was a lump of fat; it had served a good purpose in breastfeeding and it was nice to have cleavage. But still – it was never a major part of my identity. However, my voice WAS me. I had lived with it closely all my life! Although it stumbles sometimes, this thing that I use now works for a majority of communication, but it isn’t MY voice! It’s a continued sadness to me …
This year has brought more blessings as well as more challenges. I’ve been through another pulmonary embolus and more pneumonia. I had an incidence of congestive heart failure – I dropped 40 pounds of excess water in less than two weeks of intensive diuretics (not recommended!). Shortly after that, my lung filled with fluid again and a lung tap was dne. The fluid showed cancer cells so I knew that the cancer was, indeed, advancing.
But fortune still shines on me. During one of my hospitalizations, I was gifted with a laptop computer so I can stay in touch with the world even when confined to bed. My family was given a trip to Disney World from the fabulous Making Memories Foundation (www.makingmemories.org ). I have been given time to see my children grow healthy and beautiful. I am delighted to be here today and I have every intention of waking up tomorrow, too.
On January 28, 2003, Patricia “Trisha” June Tester, at the age of 46, died at home in the presence of her loving family.
Story Updated 2003