Monday, August 3, 2009
Thursday, July 30, 2009
However, I started this blog to pass on what I'm learning and possibly help others. That is what does define me. I'm certain not many read this blog, but if it helps one single person, either directly or because a friend of relative saw it, then it's worth my effort.
After the surgery, after the chemo, after the radiation, there is something else that might occur in 14% of us. Lymphedema happens when many axillary lymph nodes are removed during surgery, and the remaining ones are destroyed in radiation. They removed 18 lymph nodes from my left arm-pit. One was found to have metastisized cancer cells. That meant I needed heavy radiation in the axillary and radiation concentration on the left clavicle.
The edema, or swelling, that occurs in some of us is because there are not enough lymph glands to carry lymph fluids away to the blood system in a specified area. It's the arm on the operated side that swells, also the breast and chest wall. This swelling may happen weeks after surgery, or not until several months later, or even several years. There are those who say lymphedema is worse than the cancer that precipitated it. The cancer is cut, poisoned, and burnt out. One can become free of it. Lymphedema is not curable. If it is not controlled, it becomes worse.
OK. So, that's what they say. We love such drama! I've Googled Images of lymphodema. Pretty scary.
My left breast, chest wall, and left arm were painfully swollen within one month of the end of radiation therapy, and lymphedema diagnosed.
When it happens, it needs to be controlled. Controlled - it will not get worse - and might eventually go away (evidence of this not proven, but I believe it). I'm taking active measures to make it go away. I wear a compression sleeve from finger-tips to shoulder from morning to evening every day. It's a bitch to get on, and such a great relief to take off in the evening that my "bed time" is rather early. I also have manual lymph-drainage massage once a week. (More about that later.) I take great, great care that I receive no needle stick, no blood pressure measurement, or any minor injury to my left arm hand fingers. No activity, such as heavy lifting, being bumped. It's surprising how alert I've become even shopping.
For awhile I was depressed about this - but I have discovered new approaches, new thinking. I'll write about these, and give links, within the next few days.
Saturday, June 27, 2009
Thursday, January 1, 2009
Monday, November 24, 2008
From my viewpoint, in Germany, Medicine decides and Insurance pays whatever's decided, which is the way it should be, of course. Breast conserving surgery requires a week's stay in hospital, and that was paid 100% by my insurance. All of the other bills - surgeon's fees, anestheologist's, pathologist's fees, out-patient medications, examinations, tests, doctor's fees, were billed to me directly, which I paid, and I'm hoping to recoup from my insurance.
The day before surgery, my dear daughter arrived at my house in the morning, in spite of living over 100 kilometers away, in spite of her three children to ready for school, she insisted she take me to the hospital. I was grateful. Required to check in the morning of the day before surgery, once through the paper work, we were directed to a Ward, or Station, in the enormous sprawling Frauenklinik. I was shown my bed, and my cupboard of drawers to unpack my stuff. I was relieved to see, above the bed, a place where I could plug in my iPod charger, cell phone charger, and laptop. So - this was to be my home for a week. My daughter left, to return the next day - and I was now a cancer patient in a German hospital awaiting surgery.
I was sent to various areas thoroughout the hospital for tests, XRay of lungs, CT scan of liver, and a photograph of my breasts (chest, no face, ID# only). And eventaully, I settled in for the night. They gave me no dinner, no water. I was not especially worried. All had been explained to me. It was what it was. It was manageable. I watched some of the second season of "Closers" on my laptop, and prayed a rosary after I turned off my lights and laptop. Was I afraid? Yes. But it was manageable.
Early the next morning, I was woken by a nurse giving me gauze panties and white compression stockings, and telling me to take a shower, and then put the panties and stockings on, and get back in bed. Little did I realize that was the last completely normal, satisfying shower I would have in many months! I donned the required compression stockings and strange gauze panties and slid back into bed under the white hospital quilt. I was rolled in my bed to surgery. What a strange sensation, being rolled along flat on one's back. Interesting perspective, not wished to ever be repeated.
Once in the Operating Room, I was told to shift myself from bed to the operating table along side. At some point (no pun intended) I was given a shot. So smooth. They were so good. They gave me a shower cap and said, "Please put this on." I don't remember putting the cap on. The next thing I remembered, I was in a room with many people moving about wearing blue gowns. I had no idea where I was, or who they were. I had absolutely no idea who I was.
But a young man began pushing my bed and said - "It's OK. I'm taking you back to your room. You will see, we're going back to your room." And, as we arrived on my station I began to recognize it, and I told him - "Oh, this is familiar." "Of course," he said.
Thursday, November 20, 2008
Cancer cells are present in our bodies in increasing numbers as we grow older. But our immune systems usually zap them and there is no problem. We count on that, we figure we will be among the greater percentage who are cancer-free. If it doesn't work that way, we might believe our bodies have betrayed us, or we had lived incorrectly and caused our cancer. Bad mixture, betrayal and guilt. For awhile, waiting my for my surgery date, I was in that place - feeling guilty for what I might have done to cause it, yet feeling betrayed by my body for no justifiable reason.
I had two weeks to prepare for hospitalization and surgery. I cancelled my plane tickets, hotel reservations, workshops, plans to visit with friends and relatives. I would not be leaving Germany for the States this summer. I tried to organize my home, but didn't manage. I appointed a medical power of attorney, and a general power of attorney. I made a Will. (As DOD civilians living overseas - we know we have to do these things.) I watched MASH from the beginning to the end. Eleven years of Comfort TV, watching from my good bed every night until I fell asleep.
July 15, I checked into the Frauenklinik. I was beginning a journey that, strangely, did not frighten me as much as I expected it would.