Wednesday, June 27, 2012

Turning a corner...

I am here with good news! Stephen King received a great report last week, a date has been set for transplant and Mom is much better. What more could I pray for? Well, let's not go that far. I will gratefully accept this much good news for now.
Dr. K says his report is as good as we can expect at this point. No active bones cancer and the lung cancer is contained. He will continue to receive the 2 support treatments for now, but no chemo therapy. That was a wonderful thing to hear. The chemo probably saved his life, but almost took it too. Other than the nerve damage in his feet, which is extremely painful, Steve is doing well. His weight has returned plus another 10 pounds and his strength is slowly coming back. He gets frustrated over not being able to do all the things he wants to do, but patience has never been his strongest characteristic. Let go and let God, I keep telling him. Be a willow, not an oak. This may get me smacked soon. I will do better and drop the cliches, I promise. It is wonderful to see the positive changes in Steve's health. We have learned that cancer can be a chronic disease, not necessarily a terminal one. Thank You Lord.
Mackenzie was given an all-clear by the ENT and will have the kidney transplant on July 13. Friday the 13th, but we aren't spooked a bit! We know her guardian angels will surround her and guide the hands of the surgeons. But both mother and child are anxious. Shawn has never had any type of hospitalization except her deliveries and is anxious of the unknown. Mack is more accustomed to being a patient, but not surgery. They will be in separate rooms, but in the transplant ward and close. We picture a short, successful stay at IU Med Center and a speedy recovery for our dear girls. They are both small but mighty.
Our mom has enjoyed several good weeks lately, feeling less back/shoulder pain and seeming more herself. She keeps telling us she can stay alone, but then does something to prove herself wrong! She had a slight fall in her bedroom Monday, nothing hurt, just needed a couple of us to help her up.  We have been getting out more; sitting in the shade, going to eat and taking drives thru the country. A big change in routine upsets her but these small changes seem to be good. Mom talks much more during a car ride, pointing out old familiar places, telling stories from her past she enjoys the change in scenery I believe. Last week she told me about a school teacher she had in country school who loved to share Mom's lunches. My grandfather worked in the Tomato Factory at that time and in the fall young Helen always had big beautiful tomatoes in her bucket. Miss Qualkenbush would trade a cookie or piece of bacon for one of those beauties. Mom smiled remembering those pretty young girls sharing lunch. She always loved school and prided herself on being the best speller in the school, regardless of age. But all too often she was made to stay home to help with the younger children and housework.  I always held resentment towards my grandparents for not allowing their older children to benefit from education. The first five of the 13 childen were too often put to work in the home and outside to keep the family going. I realize that times were hard and many, many families followed this path, but I saw how bright my mother and aunt and uncles were and wondered what an education might have meant to them. All the children grew into strong, caring Christian adults and had good lives. I just wonder...
We have endured the heat by staying inside mostly, doing gardening and sheep chores early in the day. Stephen King has even resorted to watering the garden, something I don't think has happened before. All the plants started out with a bang but have dwindled or just maintained for a few weeks not. Tomatoes are not growing or ripening, just appear to be suspended at golfball size. Cucumbers are slow but plentiful, green beans may need to be picked by the weekend, but the poor corn  (Steve's pride and joy) is tassling at 3 feet. Looks like gnarly little nubbins for us with this first round maybe the next  planting will get the needed rain. His lovely yard is burned to a crisp brown and actually hurts if you are walking barefoot. Our potted flowers have fared better, but the wave petunias are suffering a blight or bug and I cut them back to the dirt last week. Hopefully with some babying we will have a couple of nice hanging baskets to finish out the summer. I am hoping to post a picture of my aqua wicker table full of pots of succulents. Do not hold your breath or strain your eyes searching for it. My tech skills haven't improved.
All these health concerns seem to have stolen my creativity. I look at the sewing machine sitting on the table with an unfinished quilt lying beside it and cannot work up the gumption to sit down and do it. My days away from Mom are often spent sitting looking out the window, lost in thought. I spend way too much time on the computer reading blogs and stories of others' lives and far to little living my own. I feel stagnant yet peaceful, guilty yet know I need to rest and abit depressed. I know what is happening and why but do not seem able to do the things I need to push myself out. Somehow I always missed THE SOLUTIONS instruction day in grad school.
Love you and and thanks for the b-day wishes. Mother is old, no argument. But not done. Talk to me. Hedy

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

Monday, June 4, 2012

I Remember Mommy

 I've stayed with my Mom 4 out of the last 6 days. It's been a difficult week. It makes me ashamed to see that written in black and white, I am Blessed to be able to have my Mom here and still knowing me. Unless you have cared for a loved one with Alzheimers you won't understand what I'm saying. My Mom is almost 83 and has always been strong, independent and was usually the caregiver. She is the oldest of 13 children, lived thru the Depression and married my Dad at 16. They waited until she was 20 to have kids, I think because they were cheated out of a childhood by the Depression, the War and their family circumstances. Mom has always been beautiful, not just pretty, but beautiful. My Dad told her that everyday of their 53 year marriage. People will tell my sister and I that we are pretty girls, but not as beautiful as our Mom. It always makes us smile with pride.
Dad worked on road construction and was away alot while we were growing up, but Mom kept everything going at home. She cooked supper every night, washed and ironed anything that touched our skin, even sheets and pillowcases and Dad's boxer shorts. Our house was always spotless and warm and full of love. Mom didn't play with us much, but she showed her love in fried chicken and starched blouses. She was always first up and last to bed. Even after we married, she didn't sleep until she had checked in on all her chicks. Ten o'clock phone calls caught me up on her day until just 2 years ago.
That is when this sad journey started. A couple of years ago, Mom started loosing herself, after her fall last summer it got much worse. We could plainly see that she could not stay alone again. In just nine months she has become a little old lady. Feeble beyond words, unsure of herself and unable to remember the past few months. Each morning she is surprised to see who slept with her the night before. We, in a weird role-reversal, put her to bed each night. Her good night kiss is the same as when we were children, except she is the little one being tucked into bed, pursing her lips and saying "I love you". This act alone makes me cry for my Mommy. 
I can do the physical work it takes to get Mom thru her day, it is never ending but nothing difficult. It is the emotional work that must be done that wrenches my heart. Reminding her to take a bite of her grapefruit at breakfast again and again. Heating coffee in the microwave time after time because she forgets to drink it. Repeating the story of how she was injured in the fall while home alone. Telling her "yes, we have to wash your hair" a dozen times as we shower. Watching her search her mind for a fleeting thought, seeing that flat, dull shadow come over her eyes as she slips away from us.  I miss my Mommy.
Stephen King and I have been married  over 45 years. That is nearly 3 times longer than I lived at home with Mom and Dad. I was quickly weaned away from home as we became parents and created our life. But I miss Mom. Daddy died after 2 months in ICU, after a stroke when I was 50. We cherished those 2 months we spent in his hospital room telling him good-bye. We four kids got reconnected during those long hours at Dad's bedside. And Mom was at the center, leading the way, showing us how to let go. I treasure those days and nights together. Saying good-bye to Mom is nothing like that, not even close.
I go into her kitchen and she lights up like it has been months since she has seen me, but I've only been out sweeping the bird feed from her patio. I bend over her bed to help her sit up and she gives a giggle and says, "I forgot who was here". It is the same for my sister who has always been there the most. Deb never quite broke away. She always spent afternoons with Mom and Dad, taking them to appointments, shopping and ballgames. She buys the groceries, pays the bills, keeps the house running like always. You would never know Mom wasn't the one doing it all still, Deb does everyhing just like Mom did. Still Mom usually greets her with, "Where have you been this week, I haven't seen you once". Or "Where are my car keys, why are you driving, do I drive?" I hurt for my sister and my brothers. We have lost our Mom. She is still here, but gone.
That's what I mean when I say it is a difficult week. My heart hurts, I want to be a child again and have her take care of me and I hate leaving when my shift is over. But I have to rest and heal for the next one.
I think the rain has brought out my gloomy side, Ladies. I'm sorry to unload on you. I just needed to share, I pray your mammas have an easier going. Love you all.