Monday, January 30, 2012

Hello, we have had a busy week here in the Valley. Stephen King is feeling good, almost normal this week. His Texas sister has been here visiting and we have had lots of lunches out with all 5 sisters. It has been a pleasant change to our usual routine. Visit with nurse practioner this week was good. She answered his questions and prescribed something to help with sleep. He has been responding well to them, no groggy mornings! We have the 5th treatment this Wednesday, so he has a couple more days of feeling good. The side effects of these powerful chemicals are almost immediate. His voice changes within 3 hours of the start, the weakness begins that evening, legs and arms start to hurt the next day and day 3 brings stomach issues. Like clockwork, they come, we treat before hand to minimize their strength, but he still suffers, especially with the diabilitating weakness. The pain subsides to tolerable levels, the stomach settles down, but the weakness continues until week 3 and he remains breatheless always. But we are learning to deal, learning to anticipate, learning to prepare. Ater this treatment he will have another CT scan to see if there is change in the tumors. The last scan failed to determine any. Hopefully there will be obvious positive changes, shrinkage or disappearance of the lung tumor, healing of the tumors in the bones and a healthy spleen. Please, keep praying and sending up positive requests for him. We live daily with that as our guiding thought, "We will beat this!"  I truly believe negativity begats negativity, not only emotionally but physically. Call me PollyAnna :-)
Things are speeding up for our Mackenzie this week. She finally met with her transplant surgeon, who wants her lungs in tiptop shape for the procedure. This means cutting back on the immune supressant (chemo) and the blood booster (epogen) injections. One was canceling the effect of the other and not allowing the bone marrow to produce healthy red cells, without which the oxygen cannot feed the lungs. What a complicated, wonderous thing is the human body. Homeostasis, if I remember my Anatomy class, must be maintained for true productive function. Balance, not only in our lives, but inside our very core, creates a healthy existence. The wonder of it strikes me as the ultimate proof of our living God. What else can explain the microscopic detail, the precise symbiosis, the miracle of a human body?  There is Love woven into our flesh and blood at the cellular level. Love from God.
We hope to use February as a healing, resting time for Stephen King. If the chemo is working well, he will have one more treatment. If not, we will discuss our options. If our mild winter continues, this short, dark month should fly by. I'm hoping for a few good snow days myself, so winter seems real. We appear to be stuck in some gloomy, gray, wet world this month, with a sunny day once in a long while teasing us with its bright cheer. I have never suffered from SAD, but am realizing why some people do fight this each year. Living in a fog without the sun is stressful. I actually thought someone was shining a spotlight in my eyes this morning when I awoke. My light-starved brain could not compute the light filled room! Surprised, I actually laughed out loud when I came to my senses.
Stephen King is out and about today, with son, Stephen and friend, Don. They are attending an 18th century Trade Fair. These guys were born too late! They love everything Early American, they shoot muzzle loader firearms, cook over open fires, blacksmith and sit around the fire telling tall tales. Steve hasn't been up to going for awhile but with Stephen driving and a good chair to rest in, he should enjoy his day. I am so happy this was scheduled this weekend instead of next. I intend to quilt awhile today. I finished one of the four quilts awaiting finishing touches. Kristina seemed pleased with Abby's 30s style patchwork wth its bright red binding. I have a few borders to sew onto Whitt's cowboy quilt before it is ready for quilting. I will get that today, FOR SURE! I hope :-)  Bonner and Joe, our nephew, are expecting another baby in August, so I just must finish the first child's quilt!  But the good news is, I'm all but finished with the two quilts for Jessie's girls. Belle is two and the new one is due in March and I plan of gifting them both with a quilt! Belle's quilt is a complicated piece and I've stumbled several times. The new girlie will get a simple quilt in a unique color combo of aqua, red and gray. I am reaching beyond the traditional patterns and colors in my latest efforts, although I tend to love a simple patchwork best. I have purchased fabric and patterns for about six more quilts, including a Gees Bend quilt.
Gees Bend is in Alabama and during the depression a group of ladies became famous for their unexpected twist on quilt making. They used what they had, with no money to purchase new fabric, they cut and scrapped old clothes, flour sacks, anything available to make bedcovering to keep their families warm. Years later, these old quilts were declared "works of art" by the public. The unusual thing which separates a Gees Bend quilt from others made across the US, is the almost modern art designs. Not mere patchwork squares or blocks, these quilts were usually muslin with splashes of color without pattern. Very graphic works from untrained, unskilled poor women in an isolated spot in the middle of the South. Courtney and I attended a showing of these quilts at the Louisville Speed Museum a few years ago and I fell in awe of them. We were blessed to met a few of the original quilters, each a sweet, strong woman, still producing ART. I will attempt to post an example of a Gees Bend quilt, but with my techno skills it may not happen. YOU know what I'm talking about!
I had a lovely experience yesterday, I told you all this was a busy week. Anyway, I attended a baby shower for the son of an old frien and his newborn son. Chris is a family therapist, a single parent and has adopted Michael his newborn son. As it often goes, Michael is the spitting of his daddy. Both are biracial with beautiful caramel skin and chocolate eyes. Chris was a constant in our home during high school and I look forward to watching his son grow up. He handed Michael over to me yesterday saying, "Burp me, Grandma Hedy." That is all it took, I'm hooked. Madeleine fell hard for this sweet living doll, too. She stalked him throughout the afternoon, hovering over anyone who had him in her arms. Always willing to open her arms and lap for him. The contact she made was wondrous, Maddie looked straight into his eyes and smiled so sweetly, whispering love words only Michael could hear. She hated to leave when the party was over. Shawn had to promise a Louisville trip soon...I'm onboard for that, Madd.
Our tradional Spring Break trip is in the final stages, Connie has chosen a beautiful, gulf front house with all 4 bedrooms facing the water. Stephen King insists I go ahead as always and enjoy my getaway with the girls. I am proceeding as though I am going, but can give my spot to a friend if Steve or Mackenzie are in an needful medical spot then. I will not go off if either is not up and around. Again, I believe that living positively brings about positive life! But it is a battle, some days, to present a happy, calm face to the world when inside I am full of doubts and questions and rage. I practice banning those feelings and most days I succeed. I appear calm and sure because I AM. Sure that we will beat these ills; Stephen King will be healthy and strong again and our Mackenzie will blossom to life with her Mama's kidney filtering the toxins from her body.
Faith is strong and powerful and nothing is more powerful than our God.
Love you, Ladies. Talk to me. Hedy

Sunday, January 15, 2012

New News, It's Not All Bad

Stephen King had his CTscan last week and we met with Dr. K on Wednesday for the results. Good new is: no sign cancer is getting worse or spreading, bad news is not noticably getting smaller either and there is a (new?/old?) lesion on his spleen which bothers her somewhat. When questioned, she just said we will watch it, no biopsy, as the spleen is prone to hemorrage. We will continue with plans for chemo again Feb. 1 and then repeat CTscan. Hopefully that will give cancer time to respond more positively to treatment. If not, it is back to square one and we look at different treatment. Apparently there are many, many drug combinations used with his type of cancer; some are successful on some people, some on others. We all feel this combo is working for him, his pain is nonexistent now, that has to mean something good is happening.  He does have some infection in right lung which appears to be fading slowly. This isn't cancer, more likely pneumonia. He is feeling somewhat shaky this morning (Saturday) from treatment on Wednesday, pain in legs, rumbly tummy, weakness increasing. By Monday the diarrhea and total body aches will hit full force and next week will be one of resting, pushing fluids and making bathroom jokes. We have this chemo stuff down, People, we can handle it! Truefully, Steve does really well managing his pain and weakness thru all this. God has blessed him with a patient serenity he usually does not possess. Thank you, Lord. I know this was for me, more than him. At least, I am claiming it. Our days on this Journey are quiet, simple and filled with a feeling of partnership. We are a trio, Stephen King, me and God. He is very quiet yet sure in his faith. Prayer grounds him, I believe. I know it helps me to settle my thoughts and deminish my fear.
Mackenzie had her transfusion, received 2 units of strength-building blood. This week, we have seen a big difference in her. She has gone to 2 evening events at school and appears to have an easier time breathing. The low hemoglobin just won't carry enough oxygen to her damaged lungs. Praying the transplant is scheduled soon.
Wow, it is Sunday evening already. Weekends fly by even when your are retired.  We had a very busy day, visitors in and out all day. Family checking on Stephen King, bringing brownies, kids and grands sharing lunch with us, more kids coming over to watch IU and weep. Good day :-) except for the IU part :-(  For a couple of homebodies who generally only have each other for company, today was a whirlwind. We watched in wonder at our grandsons, both full of energy and chatter. Caleb telling tales about his good friend Barack Obama messaging him on his Blackberry and Gavin spinning tales of Lego creations he has made this week. Did our own boys have THIS much energy? I did have to chuckle, the boys weren't here at the same time yet each asked me to TELL his Dad to let him do something, "You are his Mom, he has to mind you". Apparently I am the queen!
Winter has come to stay, I guess. After weeks of 50 degree days we have cold winds and snow flurries in the Valley. I forget from January to January just how cold and dreary the Ohio Valley gets in the winter. Or how hot and humid it is in the summer.  Someone remind me why we live here and not someplace with blue skies and balmy breezes. I really love small town Indiana, but am coming to the age where the thought of more moderate, enjoyable weather is attractive. I know I could not get Stephen King out of these hills and hollers though. His parents left Indiana when they retired for the desert of Arizona and he never understood why. He loves the gentle, green hills and the twisty narrow roads of our area and won't leave for more than a week or two at a time. Our favorite kind of day out is driving the backroads trying to get lost on one we have never traveled. There are fewer and fewer of those after 45+ years of this. Steve can always find the most interesting new paths to follow, sweet little homes tucked into a clearing, acre after acre of patchwork fields or deep dark woods growing close, nearly closing the road with their towering treetops. He points out houses of men he has worked with or woods where he has hunted or in one case a neat house on a hill where his dogs treed a coon in the garage belonging to two old ladies who were less than thrilled with him and his dog. We drive past homes we have owned wondering why we sold, or others wondering why we bought! I was 16 when we met, he was 19, we have grown up and grown old here together. This is why we stay.
Have a peaceful week, Everyone. Talk to me, Girls.

Wednesday, January 4, 2012

2012 A New Adventure?

Happy New Year Ladies, here's wishing it is good to all of us. We aren't sorry to see the end of 2011, with all its surprises and challenges. I have decided to keep my chin up and my eyes on the prize in 2012. Things will happen, good and bad, but I determine how I respond to them. At times during the past year, I have forgotten this and  felt beaten by all the bad things happening in our lives. This year I will remember to look closely at the good things going on with us. Stephen King is here, Mackenzie is getting the life-saving transplant, Mom has recovered from her injury and continues to be in good physical health, We are all still alive and kicking. We have been given the chance to live and love and learn from our happiness and suffering. God has Blessed us with His Grace.
Mackenzie will have another transfusion tomorrow at Riley, her hgb is down to 5 this week and her breathing is ragged. A refill of RBC (red blood cells) will carry her through till the tranplant in a few weeks. So far all signs point to a Jan/Feb Big Day for our girl. She is home today under protest, resting for tomorrow trip and fill-up. She is working on scholarship applications while resting. Our county foundation offers the Lily Scholarship and Kenzie is one of the Paoli seniors who qualifies because of grades and test scores. Hopefully, she will pass the first round and become one of the finalists for the award. This prestigious scholarship offers a full ride to any Indiana school. I'm so proud of her for qualifying inspite of her health issues.
Stephen King has a c-scan scheduled for Friday to check on the chemo's progress. We will get the results at Wednesday's treatment, but both of us feel sure that there has been shrinkage of the spine tumors, as his back pain has just about disappeared. We are choosing to keep positive thoughts about his adventure with cancer. We cannot change that he has this disease, but we can choose how we react to it. We choose to do everything possibly to beat it and that includes keeping our spirits light and raising our eyes up to God.
Cold weather moved in this week, snow and wild wind blew thru the Valley, but our family in Paoli had ice. We were blessed by our good neighbors, Ben and Benton brought out their snowblowers and cleared our drive and Edith sent down a persimmon pudding warm from the oven. I love our small towns, just like a big, loving family.
My sister came over last evening for a great visit. We only live 10 miles apart but only see each other in passing these last few months. She is at Mom's daily during the week, making sure everything is running smoothly. She does the grocery shopping, banking and bill paying for Mom. We couldn't manage without her. Her husband retired last week and is on a mission trip to eastern Ky this week rehabbing a home for a ministerial student. These two are givers in a big way. We love them and are so blessed to have them in our lives. It was nice to get an opportunity to just sit and visit with Deb, Stephen King and I were excited to have company, esp. her! We have spent an enormous amount of time together in the last few months and have enjoyed the chance to do so, but it is nice to hear from othes occasionally. We can get pretty boring day after day without seeing anyone but each other. Playing musical chairs can only be entertaining for so long... we tend to go from one chair to the next trying to find the most comfortable. Once in awhile someone will hit the couch for a little snooze. Lupus and cancer do not allow for athletic endeavors on most days. We will often quarrel over who is the weakest and should not be washing dishes. My 1950s upbringing won't allow me to sit while my cancer ridden hubby cleans the kitchen after meals and he remembers last year when he had to carry my soup to our bed for me to eat .
He doesn't want a relay of that and encourages (nags) me to rest. Of course, I am much, much better now and can manage preparing a meal and cleaning up after. God sees to it that one of us is strong enough to take care of the other in this partnership. We always have and always will.
Steve has decided to go check on our nephew (the 3rd son) and his house building adventure today. He is two weeks out from his last treatment and feels the best he has since last month. This means if he sits down and rests for 15 minutes after getting dressed he can drive 5 miles to Ians! The weakness from the chemo is the only side effect which will not go way it seems. He has always been big and strong and is having difficulty dealing with this. I feel the need to drive him myself but he refuses that offer. I just remind him to use his head and not exhaust himself. After dealing with lupus for 20 years, I've finally learned this lesson.
Since I have a few hours to myself, I think I may take down Christmas and return the parlor to my sewing room. The 4 quilt tops are still patiently waiting to be finished. I think I may just play grab-bag and work on which ever I come upon first.
I had a great chat with Alison about her awesome new (old) mantle piece this week. I'd love to hear from the rest of my girls. Love you all. Talk to me, Hedy