Wednesday, June 13, 2012


Good afternoon Gaggle, there is news of improvement all around for our family this week. Mackenzie had sinus surgery yesterday to remove infection before the transplant. Apparently the Wegners Disease has damaged the sinus tissue as well as the kidney and lungs. This is her second sinus surgery. She came home last night after being assessed by her docs. Feeling sore today, but she says she is hungry! She is such a King. If the ENT releases her at next week's visit, they will schedule the transplant.
Stephen King had a full body Pet Scan yesterday and we will get the results on Wednesday when we meet with Dr. K. He has regained all his weight plus 10 pounds. He has no back pain at all and is slowly regaining strength. The chemo damaged the nerves in his hands and feet and he suffers pain when he is on his feet, but says its a good trade for bone cancer pain. If he gets an all clear on Wednesday, I believe a weight loss program may be in OUR future. I've needed that for years, but it will be his first experience. Not a fun thought :-(
My mom is actually much better this week. Her pain level has definitely improved and with that she has become more alert and more like herself. It is such a blessing for her to feel better. My sister and I will be the only caregivers for a week or so, as our brother and sister-in-law are vacationing. And we are excited to see what progress she makes each day. We will deal with any regression as it happens. I feel much stronger this week after a few days rest and with her improvement.
Steve and I worked in the garden and flowers this morning, boy oh boy I am out of shape. The heat gets to me so quickly; the sweat pours down my face, my hair gets drippy wet, and I become quite cross! Stephen King handles heat well, it is the bending and stooping that gets to him. We make a comic pair as we hobble around, wiping sweat,  favoring knees and feet, trying to weed and feed, trim and deadhead, harvest and plant. Thank Heaven the lawn is too dry to mow today. We would have needed the EMTs. Hard to imagine we used to farm abit and put up hay with just our young kids help. Aww to be young and strong again. I have really enjoyed most stages of our lives and  the farm years were among the best. This little bungalow with its 3 acres is a all we need and all we can care for at this stage. Our son and daughter-in-law live at the farm now and keep the sheep fed and watered. Steve visits most days to monitor them and check for problems. Life isn't a constant, but a changing tableau.  We learn to be willows not oaks, bending with the wind not cracking under the storm.
Nine months into the journey with cancer, we begin to deal with the realities of the financial cost of disease. Any inquiries to billing departments or insurance companies have been met with, "it will work out, it is too early to be concerned about your balance yet, your file is still too active to answer those questions". Oh really? Now everyone wants their money and the insurance company is dragging its feet on payment. I have read horror stories about this, never thinking we might ezperience it. Two hours on the phone this week have done little to reassure me that we won't have a big bill to pay off later. Medical costs and insurance charges are completely outrageous, as everyone knows. One drug, Steve gets every three weeks costs $23,000 each use. Yes, I said $23,000. Every three weeks for 9 months with no end in sight. And that is only one of the many drugs he takes. And we have very good insurance and Medicare. I appreciate that these drugs are helping to keep my husband alive, but really why do they cost this much? Who is making a profit from them? And how much profit is anyone allowed to make on the lives of others?
As I remind Stephen King, they can't eat us, so we will just keep taking a day at a time and keep praying for Grace.
June is my favorite month, hope you all are out of school and enjoying it. Playing with the kiddos, gardening, grilling out, picnics, 4-H, swimming, enjoy it all. Hope we can have a Gagglefest soon. I will drive anywhere if I can work in a free day. Or we could do Indy, IU Med Center is close to the Park on the river. LOL
Talk to me, Ladies.  Love, Hedy

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