Diane Stefani
It was a cold and windy day in February, when the letter arrived. Written by my Mom, a vibrant, pro-active individual, constantly striving to make the world a better place. She towered above me with all her knowledge of the world, politics, the arts and now—Ancient Greek History, in Greek. She could quote the ancient philosophers and theologians verbatim without a pause. This picture of a beautiful 75 year old woman, mother of 3 grown children, not totally flawless, but by most standards, a valuable and conscientious contributor in her own world, a social activist with many great causes and a never ending love for her family—-this picture must be painted.
So it starts. I open her letter, expecting some great recipe or something akin, only to be sadly advised that she had just been diagnosed with Stage 3 lung cancer!!!
I was immediately devastated since my Father had also just started treatment for Non-Hodgkins Lymphoma, another type of cancer. We knew that it was going to be extremely difficult for my Mom to be able to care take my Dad. He was very sick, and the chemotherapy was starting to affect his abilities. He wouldn’t eat and was losing weight at a very rapid rate. It was very sad, actually devastating to see this impressive figure of a man, reduced to 100 pounds! It was such an undeserving sentence for him, to be incapable of helping my Mom. He was extremely devoted to Mom and was grieving for her situation, helpless to make it better, for her or for himself.
This is where I come in. Once I dealt with the shock and awe of it all, I decided, with my very supportive and loving husband, to move them into our large home, so that they could be cared for. I had some medical training and experience, making me the most qualified to take care of their many needs. No one could have talked me out of this—I felt responsible for their care and gave them as much love as anyone could. It was very demanding, especially since my husband’s Mother, now 86 years old, also already lived with us. She could no longer live alone and had lived with us for 3 years with advancing dementia and osteoporosis. She wasn’t always aware of what was going on and enjoyed the fact that my parents had also arrived for a long visit. Luckily, I enjoyed the cooking, my only creative outlet that would also benefit their needs. We took my Mom for a second opinion and even a third—but the prognosis remained the same. She had about six months, maybe.
Dad was losing many abilities, and of course, driving was out of the question.
Somewhere in this sort of controlled chaos, during Mom’s chemotherapy, I discovered a very small lump in my right breast. Actually, my loving husband, found this lump. I collapsed into bed that night, exhausted as usual, and in no mood to play. Mom had chemotherapy the next morning at 7AM. Anyway, Paul, my hubby, threw his arm over my chest and his large, rough fingers landed on the side of my right breast. Without much further adieu, he calmly informed me that he felt a lump. I didn’t believe him and thought he was trying to be some kind of funny!! I couldn’t find the lump and told him to go to sleep like a good boy. But, I did feel the lump—a hard, little lump of coal, small and painless, that did not move or flatten out like a cyst. I immediately went into a silent tailspin.
The next morning, Mom was in her chemo room all set up for her 6 hour treatment.
I did not tell her what was going on with me, but told her I needed to check out some information. I ran to my Dr’s office up-stairs, but it was not open yet, of course. As soon as somebody showed up, I was pleading for immediate help in that I had found this lump. And I told them what bad timing this was, with 2 very sick parents and a helpless Mom-in-law. That I had no time for this and no time for treatment. As soon as the Dr. arrived, I was sent to X-ray. Nothing was showing on the mammogram! I was in shock, but felt at least that it was probably nothing to worry about. Then, the same day, he performed a needle biopsy and sent me merrily on my way. He was very kind and reassuring and I felt as though it was all a horrible prank—and it would just go away.
Exactly 2 days later—the call came. First, the bad news. Yes, I do have breast cancer and also extensive DCIS (ductal carcinoma in situ). I would need to have a surgical biopsy to determine size of the tumor and any invasiveness of the cancer beyond the tumor. The DCIS was also to be verified .DCIS is a pre-cancerous condition that does not leave the breast, unless it develops into one of the many forms of breast cancer. A pre-cancerous, DCIS, condition may never turn into breast cancer—that’s the insidious nature of this disease. You cannot feel it and it cannot be observed in an X-ray or Mammogram.
But, the good news, if there is such a possibility, was that the tumor itself was 0.8 centimeters in size. Being less than 1 cm. made this a very manageable situation he felt, with further treatment to be determined by an Oncologist. Because of the marginal extension of the cancer cells beyond the actual very small tumor, I was determined to be at Stage II.
I reported to surgery for the biopsy and hopefully removal of the entire tumor within a week. I came home the same day, and nobody knew what was happening to me, except my daughters and husband. But, as it turned out, there were invasive cancer cells already at work. The lymph nodes that were removed showed no sign of extension.
So, it was my decision now, with recommendations made by my Oncologist and Surgeon.
Mastectomy, partial or total, or lumpectomy. ? Did I want reconstruction surgery at that time? Was chemo therapy and radiation part of the protocol? So many of your treatment decisions are now left to the patient. After much research on the pro’s and con’s of both procedures, I was totally undecided and felt I needed a second opinion anyway. In the mean time, my Mom’s condition was getting worse, much worse. My Dad was re-gaining enough strength to walk around more and more, but also falling a lot more. And, he would get lost if he walked around outdoors. One of my brothers (I have two), would pick him up every Wednesday to run some errands, buy pipe tobacco, etc. Dad had retired from the military after a 29 year career in the Army. He had earned a Purple Heart in Korea and was in charge of an ICBM missile program that required him to travel through war zones all over the world.
I was extremely thankful for any respite care that was available. My husband was busy with lots of things, but his domestic capabilities were an undeveloped resource.
But he gave me much moral support and love, which was essential for my recovery.. As soon as my second opinion was established, my time frame for my own treatment became the next question. Once again, the burden laid on me to make my own decision about surgery, etc. My Mom’s illness was my biggest problem though. I wasn’t in denial about my own, but she desperately needed help in almost every way. Her sharp mind did not waiver. She became increasingly upset with my Dad about little things. He was digressing rapidly and was further diagnosed with PTSD! A new phase was about to start. I was becoming overwhelmed by it all, and still had a long road of treatment and recovery ahead of me?
If I recovered?? I started getting a little scared about my own condition, untreated as it was, and my grief for my Mom’s status was eroding me emotionally. I needed a break, of any kind, anywhere in order to re-group and begin my own fight on cancer.
At this point, my hubby decided that we needed some time away from all of this stress. The physical, emotional and mental stress was taking its toll. We were living in
”The House of Cancer”, which was needless to say, not the healthiest atmosphere for us and our life, as usual. We were being encouraged by many friends to take a vacation, a leave of absence, a breather allowing us to go on with our lives, somewhat.
Our annual month long fishing trip to the Klamath River in N. California in August was doomed. But thanks to the good graces of a brother(s), we made the decision to go for a week and fish for a week, non-stop, play with friends and enjoy the beautiful beaches at the mouth of the Klamath River as it comes in from the ocean—teeming with huge salmon, on their way up river to spawn. It is an unforgettable experience, one that completely takes one away, far away, from the drill of everyday life and all its problems. As long as my parents were all being well cared for, I would be able to divorce myself from them for one week. I had never been a fisherperson and lacked all the skills needed to catch a huge fish—coming right in off the ocean while I am standing on the beach, shoulder to shoulder with 100 other’s doing the same! It looked insane—but I knew that if I could catch a fish—I could also beat this cancer.
I had set myself up for failure—but I was determined, even if the huge fish drug me out to sea!!! And, after I landed this great fish, I realized that I could probably do anything I had to do—no matter what it was. It was all relative to my current situation and tested my strength to the max! It weighed 26 pounds, but felt like an elephant. It changed my abilities and gave me a new perspective on the impossible. Now, I always see it as a remedial and challenging event in my life.
In the end, my Mom passed on a few months later and I had my lumpectomy with 16 lymph nodes removed. All were clear of the cancer, as well as the margins of the lumpectomy. The surgeon told me that I cried for my Mom during the surgery, while under anesthesia. I know she was there with me.
I was further treated with radiation for 6 weeks, every day except weekends and started the wonder drug, Tamoxifen, which I took for 5 years.
As of a week ago, I am still breast cancer free. There are nine different types of breast cancer and mine was one of the slowest growing types (hormonal). It may not be the right decision for another person, to delay treatment as long as I did. Many types are faster growing .As with all cancer, the sooner that it is treated, and the better in almost all cases. I took a chance with my life—and kept a very positive attitude all the way through. It has now been 12 years, with no recurrence.
And, I am still planning another fishing trip to those hallowed waters of the beautiful Klamath River in a few months. Last year, we took our parents on their final voyage to scatter their ashes among blankets of sweet rose petals into that river as it went out to sea. Their souls are resting in peace—capturing the solace and peace that they so deserve.
If my story is selected, and I am being presumptuous, then I have a finale report about my breast cancer.
Something I did not mention: lymph edema.
It is a complication of the surgery/radiation complex that is all too often not mentioned before the surgery.
I had some information about it and both my Oncologist and 2nd opinion Dr. from U.C. San Francisco advised me that it is a rare situation. However, I have found out that this is not at all the case, and for those women who do end up with it— it is a lifelong problem.
But, there are, with the proper information, lifestyle methods that may help one avoid this.
MORE WOMEN NEED TO KNOW ABOUT THIS.
The condition has inherent dangers and consequences–some of which have kept me on prednisone for weeks at a time.
As a result of this condition, my right arm and hand is about twice as big as my left. This is caused by swelling left in the limb and it is incurable. And it is caused by the breast cancer surgery and the radiation. The loss of 16 lymph nodes and the further destruction with the radiation completely alters the flow of normal lymph fluid.
Anyway, I think it is extremely important for women to understand this condition.
Thanks for listening, Diane Stefani