Transplant update

No transplant this week, Mack has a sinus infection again. ENT wanted to do sinus surgery before transplant, but Team vetoed that, her kidneys are in critical condition. Poor kid is at breaking point, exhausted  with struggle  to walk, eat, breathe. Another CTscan next week to assess infection. Please, keep praying for her.
Stephen King is a new man lately, 9 weeks without chemo. PETscan scheduled for June12 will show status of any cancer. He is gaining his strength back and looks like his old self. His hair and beard came back very white, as in Poppa Smurf. I try to keep him out of Blue clothing, heehee. He mows or gardens most days with plenty of naps between.
Mom continues down the winding Alzheimers trail, good days and bad. Of all our challenges, this feels the most stressfull. Not much hope of a good outcome and each day is an emotional battle. Less and less of our mom lives in the sweet lady we care for. We are with her in 24hour shifts and each time brings a dread of what we will find, but when it is time to go no one wants to leave her. I usually need to sleep for 12 hours afterward to recover from the stress. Lupus, cancer,  Alzheimers or kidney failure all make miserable companions.
Allthekidshavetheirpoolsopen andtheywillbeinthewateralltheholidayweekend,Imsure.  Damn spacebar isnt working, can youtell?
The summer heat is building here inthe south, Ladies. Rioting flowers andgarden plants, the Valley looks like a fantasy land.Comeseeus. Love youall. Hedy  ***thanks toLara@ Primitive Homesteadforthesweetwords.

Hello

I know I've fallen behind here, sorry. Our lives have picked up speed again this month. Steve is doing so much better since receiving word that his bone cancer is gone or inactive. Such a blessing. Prayer and big medicine have made a miracle for us. The lung cancer is still there and is being contained by another drug which isn't as destructive to his body. This will continue at least until June when he will have another cat scan. The doctor has him on a steroid which takes care of the fainting, too, so he is up and around on his own again. And the steroid has given him an appetite so the weight is returning. In all things are looking up. The chemo damage to the nerve endings in his hands and feet still causes issues, especially his feet which seem to be worsening inspite of new meds.

I'm back on the schedule at Mom's too. We are trying to return to normal (impossible word) and live life to its fullest. Mom has declined alot since I've not been staying, I was shocked at how much she has lost. When seeing her only for a few minutes throughout the week, she seemed good, but spending 24 hours reveals her limitations. The doctors keep telling us Alzheimers is responsible for all her symptoms, but sometimes it seems she has other problems. She was seen by her optometrist this week and needs cataract surgery if she wants to read. Reading is an enjoyable pastime for her, even though she repeats alot. We are going to pray on this before we decide what to do. Prayer Always helps and Never hurts.

I have filled my porches full of flower pots with beautiful bright blooms this week. I love spring with everything fresh and new. Before summer is over many will dry up, birds will nest in others, stormy winds will blow a pot or two off the banister, but right now they are gorgeous. I enjoy using odd objects as pots, but this year I've finally put some vintage planters to work holding cactus. I have a collection of  American Bisque Pottery Co. figurine planters on an old aqua wicker table. Such a cute sight when walking up to the front door. If I can figure out how, I will post a few new pictures. Stephen King has planted a few tomatoes and peppers and some corn and green beans in his garden this week. So good to know he feels well enough to accomplish this. He works around the yard and garden in the morning and naps throughout the afternoon most days. It is terrifying how much strength he lost in the past 8 months. He is slowly regaining now, Bless his heart.

I don't think I've told you that Courtney and Ken are married now. They had a simple ceremony at his Naval Club with his family and a few close friends. We could not make the trip, but have the video and many pictures. He is a dear, sweet man and she is happy so we count ouselves blessed. We do want to visit Australia and get to know their life, but they are scheduled for a long visit here this fall. It will be awhile before we can travel to Oz. I am uncertain I can be on a plane that long and Steve needs to be stable physically. I want to do a big family trip, but know that won't happen anytime soon. I just imagine our kiddos seeing downunder for the first time...so exciting for everyone. Australia is such a unique place, Court loves it there. Our boys could have big adventures there! Gavin plays Indiana Jones with the hat and whip, he could really discover the Outback.

Mackenzie's transplant has been scheduled for May 23. We are excited to see this happen after such a long, hard winter. She is terribly thin and has little kidney function now, but insists on graduating on the 19th and just yesterday had a great daytrip to Chicago with the NHS. That girl is amazing she is graduating Academic Honors with a 3.5 GPA and has been accepted at Hanover with an academic scholarship all while fighting for every breath she takes. She's a warrior, strong in her faith and in her heart and mind. I love that child.

Anna, I am so thrilled with Dexter. You have a beautiful child, Sweetie. You and Brett know the true blessing of life now. I really expected you to have a girl, you will have to be careful around Janelle, she may try to trade with you! We have to get together early this summer, really it has been too long. Gma Hedy needs to rock the baby boy.  Take care ladies, love you all. Hedy

LOOKING UP

Things are actually looking up this week. :-) for Stephen King. A visit with Dr. K on Wednesday had positive results. He was given a new med for the dizziness and it appears to be working. Apparently the chemo caused an issue with his blood vessels, they aren't constricting when he stands up and dizziness results. So far today, after 2 doses, he hasn't been dizzy! The weakness is still bothering him, but no more falling on hi face!! We are thrilled. Dr. K was positive the chemo has effected the bone tumors since he has no more back pain. ANOTHER BLESSING. He is scheduled for another Bone Scan on the 3rd, so we will know if a change shows in the spine and legs. On the 9th we will start another type of chemo to address the lung tumor. The drug is yet to be determined. I cannot express how grateful we are to have the dizziness resolved. The dread and fear of falling kept him in his chair and me on my toes. Praise the Lord.
Mackenzie continues to WAIT for her docs to decide if and when she will be healthy enough for the transplant. The stress is difficult for everyone to cope with; Shawn runs everyday to find some peace, praying and speaking with God with every step, Stephen is working out of state this week. I'm sure he leaves part of himself at home with his family. I am torn between wanting her to have the surgery and be well and dreading the actual operation procedure for Mack and Shawn. So difficult to turn it over to God and know He is in control. We women have such control issues!! Oh ye of little faith! Worry is a waste of time and energy, yet we do worry about all the issues we cannot change or control.
This weather is such a treat this month, we are enjoying afternoons in the yard. Not usual for March, but much appreciated after our grey winter. I'm painting a few old pieces of furniture, adding bright new fabrics to bench and making cushions for the porch swing. I cannot wait for pots of fresh plants to brighten up our porches. We are undecided on the size of the garden this year, not certain the usual large one can be properly cared for by these two old folks. Probably won't plant potatoes or as much corn, but have to have the tomatoes and green beans. We may use more mulch and less tilling to save our energy.  I'm thinking of hosting a painting party to trick our kiddos into painting the garage and shed for me. For a few grilled hot dogs and a couple of desserts, we can get things spruced up around here.
I've enjoyed the pictures Allison has posted from their Spring Break in Seagrove. Ahhh, the sight of those waves and that sun and sand is almost like being there. Thanks, Al and Rex. I cannot believe how grown up the boys are. Jordan looks like a teenager, nearly as tall as Dad. And Trenton has lost all his little boy look, no more little ones, Al, you have young men now. Having had lots of thinking time this winter has me pondering how quickly life goes; Stephen King and I are now the old folks, our kids are full blown adults and even the grandkids are no longer babies. We always think there will be time for the things we want to do, but now we know sometimes that isn't to be. I'm so glad we tried to spend time with our loved ones. All the Sunday suppers and summer vacations have a special memory when looking back on them. The nightly meal together after Steve came in from work was a hassle for me and a pain for the kids, but I am so happy we always insisted upon eating together. Sharing our day helped build the closeness we all feel now.
Speaking of family...gotta go shower, Papaw Steve and I are taking Shayla to lunch today and we cannot keep her waiting. Love our big girl!

Enjoy our gift of Spring, Ladies. Talk to me. Love, Hedy

Resolve

Tomorrow we start another path in our cancer adventure. Although the last chemo combination did not shrink the tumors, Stephen King will continue Avastin a drug which cuts bloodflow to the lung tumor and will also begin Zumeta which will help the bones to strengthen against the tumors in his spine and legs. We have been resting and recovering the last few weeks. The taxol in the first series was so harsh on him, he could not handle the new series without a break. He has had a few days in the hospital and frequent fluid refills to combat the weakness, fatigue and dehydration. Because of a tendency to fall, Steve is using a cane most of the time. He has a wild variety and usually switches daily. His dad was a collector and left him several. Son Stephen also gave him some old ski poles which he uses outside. The wildest one is made from shumac and has a knife blade on the end. My father-in-law made this while living among the snakes in the Arizona desert! A nurse assisting Stephem King at the cancer center was shocked to unlash the weapon as she handed him his walking stick! I am surprised we weren't arrested as terrorists. They may have installedmetal detectors in the treatment room by tomorrow. :-(

Dr. Says I Need To Reduce Stress In My Life; Why Didn't I Think Of That?

I had a doctors appointment on Monday he has decided it is time for biological injections, physical therapy and frequent massages. However the first words from his mouth were a concern for my stress level. I'm quite certain that raised my BP several notches. And personally, I believe I wear my stress well. I haven't pulled out all my hair yet, nor have I taken to drinking. In fact, many people comment on my peaceful composure in all situations. I may be caught staring into space, wringing my hands or making a quiet hum at times, but those are just coping skills, not signs of unraveling. I'm still considering those injections, there are serious side effects with them and I need to be strong for Stephen King for awhile yet. But I am anxious to get started on the massages, as they have always helped.
Steve has another CT scan on Friday then sees Dr. K again on Monday. She scolded him today for not eating and drinking enough this week. He has lost another 6 pounds and needed fluids last week. She doesn't want to give another treatment until checking on his progress. If the tumors are not shrinking she will have to rethink his treatment. There a several combinations of drugs which may help him. We are praying this one is doing its job against the terrible stuff. Steve has had a rough couple of weeks since the last treatment and wasn't looking forward to next week's treatment. His strength is nearly gone, he has lost 20 pounds and he has dizzy spells each time he stands. But he is a fighter and has faith he will beat this. 
Shawn and Mackenzie return to Riley Hospital on Monday for the last round of testing before the transplant. Kenz gets weaker everyday and is choosing to go to school only 3 days a week now. She doesn't want to get behind in her Pre-Cal and Physics classes but just cannot do a whole week now without becoming ill. Her weight, too has slipped down and her Hgb is a shaky 6.1 this week. Up from the 4.4 before the transfusion, but not even half what it should be. She was accepted to Hanover and is thinking she might like to go there in the fall. She was planning on IUS because it is close enough to commute, but thinks she might be up to living on campus after the transplant. I'm encouraging the move to Hanover. She hasn't had much of a normal teen life and I would wish for her to have the total college experience. We shall see. Her health is the important thing now.
That's all I have, Ladies. Nothing inspiring, except the fact we are all still here, hanging in and hanging on. Love you all. Talk to me, Hedy

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

New News, It's Not All Bad

HELLO Y'ALL,
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.