I’ve been writing drips and drabs since i received your e-mail address from a friend. Presently, I’m recuperating from a course of total brain radiation for five brain tumors, diagnosed this past spring. It is not brain cancer, but metastatic breast cancer that was diagnosed on December 22, 1993. I am extremely fortunate that this metastatic site was diagnosed early. So far I’ve had no symptoms, pain or a clue that something was wrong. I owe this to the perseverance and dedication of my wonderful, on top if it, doctor who prodded and probed to make sure I was okay.
We moved to Florida from the northeast and I needed to establish doctors, so i went to a primary internist who took down my complete medical history. I told him that i was diagnosed with breast cancer in 1993 and underwent a modified-radical mastectomy with lymph node dissection (4+) on New Years Eve 1993. The blood work he ordered also included a CEA test, which came back elevated x3. He suggested I undergo a ct scan. I phoned my original oncologist who said she doesn’t do the CEA due to too many false positives, too expensive and the levels indicated weren’t even that high for a breast cancer patient. However, she strongly suggested i have the CT scan, because my new primary care doctor suggested it. Only the perseverance of my new doctor started the ball rolling for every one else on my medical team!
I had gone through a torturous course of chemo, which literally almost killed me. I opted out of radiation treatment, because my tumor was small, a little under one centimeter and in direct line of my heart. I refused to risk spending my life on the couch a la Elizabeth Barrett Browning!
If the fates interfere- we have no control -the only control we have is how we choose to live our life.
Now I find myself making up my own physical therapy (my first career as a young woman was as a registered nurse). Making it up as I go along. I refuse to be sick. I did that enough 15 years ago. I now have a chronic disease. I have never stayed in my pajamas or bathrobe. If and when (as all of us begin to deteriorate) I choose hospice (that conversation blew my husband's mind) to die, so that i will go pain free, with dignity, with loved ones nearby.
My daily routine is puttering around the house, because I am extremely weak and exhausted, which I knew would happen, so I’m not in the least concerned. First two weeks I mostly slept on couches and recliners. I realized I needed to get a handle on this. No one on my medical team said anything except that I would be exhausted for at least six weeks, which is normal, but not what to do about it.
Puttering to me means exercising to gain strength both mentally and physically and build stamina. This means using your arms, hands, legs and knees, as many body parts as you can and walking around as much as you can.
I have difficulty falling asleep and staying asleep. So glad to be retired so that I don’t have to worry about how much sleep I get. I sleep whenever, sometimes a few hours a day, sometimes more. I can rest, nap, etc. During a 24 hour period, assured that it would all turn out okay.
I was miracle baby that should never have been born. My parents were the only two of their family of origin, extended family and friends in the small cities in Poland (both lived near the Russian border). I do have relatives in Israel who survived by fleeing to Russia. I just spoke to them to wished them all a happy and healthy new year, and decided on the spot, now that the crisis is over, to tell them about me.
I born was born in a small village in Bavaria two and a half years after my parents married. In June 1949, we landed in Boston harbor, met by the Red Cross, who was giving out snacks of ice cream, doughnuts, and juice. My mother almost went into a panic thinking they were again in dire straits!
I have an extremely positive attitude – I am so happy to be alive at this time in the U.S.A, with so much research, options, hope and money pouring in from different organizations, etc. The other alternative is hopeless, depression and the realization that you will die anyway.
I am so happy to be alive, well, i.e. without pain, a support group, friends in Florida and friends from before all across the U.S., Canada, Israel, south Africa, Chile, Australia, etc.
At this moment in time, I feel the healthiest I can remember, except for the fact that I have bone mets from my breast cancer and tumors in my head from brain mets, but this is my life!
I putter all day and sometimes most of the night. (I have difficulty falling and staying asleep). I am lucky to be retired. I go to bed when I think I can sleep, usually very late, sometimes it's almost morning. If i don't sleep I stay in bed, rest, let my thoughts wander, go to the bathroom as needed. I know when I do fall asleep, I generally wake at 10 am. I spend the day puttering, which involves walking around the house- my exercise.
Puttering means bending down at every opportunity, picking lint off furniture and carpets, wiping spills off floors, wipe down shower tiles, glass doors and floors with paper towels, etc. Forget about the dishwasher – wash and put dishes away - great stretching – clean window sills, dust furniture, knick-knacks, counter tops, kitchen and bathroom. Clean floors in bathroom with paper towels, make the bed every day with throw pillows and all - you get the picture. I enjoy doing it, it keeps up my stamina, makes me strong. The one downside is this routine makes my husband crazy. He thinks I’ve gone insane, and he may be right, but for now, it’s all par for the course.