Why me? This is a tail-chaser, an expectable thought but a useless one, though I spent a little time with it. My answers are:
- cancer runs in my family (not breast cancer);
- I lived for several years on a blueberry/cranberry farm where pesticides were in use over a long period of time;
- I drank well water on the farm that pesticides may have contaminated;
- I have for years lived in antique homes built on granite foundations and I live in an area where there is lots of granite (radon from granite is thought to cause cancer).
According to some, disease is an outer manifestation of an inner condition. I am disinclined to believe a theory that suggests we bring these things on ourselves. I believe there is a mind-body connection and nurturing, supportive thought is helpful, even important in managing disease, but I doubt that attitude alone can cure.
I met the news of my diagnosis with some relief to finally know the reason for the pain and fatigue I’d had for many months. I was angry that it took so long to find out what was wrong, fearful of what lay ahead and overwhelmed by the process at hand. There was so much I didn’t know, even now I am still learning about my disease.
In the beginning I didn’t feel much like talking, except with Chad, who was going through his own shock and sadness. I alternately raged and felt utterly undone. I was mad at myself for not seeking a different doctor when I knew I was being condescended to and ignored. Each time I went to the clinic I’d prepared myself to be patted on the head and sent home, still in pain. It didn’t even occur to me that the lump I’d felt in my breast in February (the one the nurse dismissed) and the pain in my leg that I’d had since the previous August were connected.
Pain finally drove me from my stasis. The defining moment came one night in May when my leg hurt so badly that I couldn’t sleep. (I’d been diagnosed with early stage breast cancer but the pain in my leg was considered a separate issue.) I called the hospital emergency room in Ellsworth (an hour away) and spoke with a nurse who changed my life.
“You’d better get right down here,” she said in a thick Irish accent, “There is more to this than leg pain, and I also think you need to see a different doctor.” Chad and I drove through the dark wondering what would happen, determined to ask questions and end the cycle we’d been in. The doctor on duty listened to our story and delivered what turned out to be an accurate assessment of the situation.
She said a mammogram should have been ordered on the breast at the time I’d first felt the lump. She stated that the cancer in my breast may have spread- the small abnormality the radiologist observed in my thigh bone was very possibly cancer and that a full body bone scan should be ordered. She suggested that there was something in my lower spine pressing on the nerve that runs from that area down the leg, possibly a tumor. She strongly advised that I get another doctor, agreeing with me that MCCM was the best place to go. I made an appointment the next day.
After being fully diagnosed at MCCM, I spoke with an attorney about the way I’d been treated by my local physician. The attorney informed me that while perhaps the doctor was not particularly good there were no damages that I could collect on, were the case to go to court. This was because I’d had advanced cancer for quite awhile, for longer than the period of time I’d been seeking treatment. The end result was that I had Stage 4 cancer regardless of my involvement with the local doctor. The local doctor had followed through, albeit casually, as did the nurse and the radiologist who read the scans. According to the attorney, my case was difficult to diagnose…(but not for the team at MCCM).
Even when the bone scan was right in front of my local doctor he misread it. He determined that the problem area was arthritis, rather than cancer. That was the first bone scan, there were many other scans/tests done later at MCCM. It seems to me that part of the problem was the local radiologist’s inconclusive reading of the scan, which supported the doctor’s laid back attitude. I have since learned that many young doctors and radiologists begin their practices in rural areas of the country where they are able to find work. Just starting their careers, they are more willing to accept lower pay in return for the experience they will gain. After they have gathered several years of skill and expertise, they often want to work with better equipment at more cutting edge facilities with more highly acclaimed peers and in higher paying positions. And so many leave the rural area and the cycle of temporary, inexperienced medical professionals continues.
There was a high rate of staff turnover at the local clinic, however, the doctor and the nurse who treated me were well established in the community. (The radiologist was a newbie.) I believe that doctor, who was running an area methadone center may well have questioned my complaints of pain as drug seeking behavior. He many times suggested to me that I was just “getting older” and it is possible he thought I was exaggerating my symptoms. Perhaps, as I was being treated for anxiety and depression, he may have believed “it was all in my head”.
I’ll never know his reasoning, but his attitude cost me time and caused frustration; his methods induced self-doubt and confusion. There is a Cancer Care Center in Bangor, but I was not referred there. Apparently the protocol at that center does not include surgeons, the patient meets an oncologist after surgery. At MCCM all services are delivered concurrantly, as needed, in one place. Although my first interaction was with the surgeon, we met the oncologist the same day as the diagnosis and she was aware of my case from the outset.
The energy I spent on anger left me depressed and unfocused. Within a couple of months I was able to regroup and begin again from a different perspective. Counseling helped me to diffuse the anger, as did guidance from our pastor. I have written about this in previous posts. I started to work on prioritizing how I was going to spend my time and on defining my goals. It wasn’t easy. My work, my life in general had always been connected with physical labor- going places, hunting for antiques and furnishings, lifting, painting, gardening, all done at a fast pace. I was unable to fulfill my decorating jobs or to easily participate in rennovating our home. The things I’d done for pleasure, many the same types of things I’d done for work, were out of reach. I was tired, weak from radiation, in pain and still adjusting to all the medications.
My relationship with my now husband was a primary concern. We’d had a wonderful intimate life, the first truly positive one I’d ever experienced. A devastating side effect of radiation and the tumor in my spine was the loss of any sexual sensation. Hormone therapy (in particular, Lupron) contributed to the situation, the damage is irreversible. This was a terrible loss for both of us at a critical time in our relationship.
With the help of Premarin, a topical estrogen cream and the use of a lubricant we continue lovemaking, although the experience has shifted in intensity for me. I love my husband and want to engage in intimacy, there is still tremendous attraction between us. (According to research more than 50 % of women in various treatments for breast cancer discontinue sexual activity). We have changed methods to accommodate our circumstances, the outcome of course is different from before. We have invented new positions as I am unable to withstand certain types of movement, we use massage to compliment the experience. I have learned to be a more attentive lover but I still miss the sensations of desire. Fortunately, Chad is extremely understanding and sensitive, however, I am still adjusting to the loss.
My new goals are to stay present in my situation, remember that I am not alone and ask for spiritual help, ask friends and family for help, take care of myself, use what time I have less for chores and more for creative activities, do the things I want to do as I can, and participate as fully as I am able in my daily life. Writing this blog gives me a creative outlet and a positive way to share my experiences. I am preparing to return to painting this winter, I have 4 commissions waiting for their time.
Having cancer is truly difficult, it is more than I can do by myself. I have come to rely on the team approach to daily life as well as in my health care. The team is God, Christ, the Holy Spirit, nature, music, literature, art. The team is Chad, my son, my son’s girlfriend, my step-son, my parents, my brothers and their wives, my friends. The team is my pastor, my counselor, my oncologist and her staff. Before cancer I may have been part of a team, but I didn’t feel it the way I do now. I am deeply grateful.
My next posts will be about subjects other than cancer, it is hard to write about and I want to explore some antique houses, some cool furnishings, some decorating projects and my village as the season changes! I hope the material about my cancer is helpful. It has helped me to write it. XX, C