Sunday, December 16, 2012

Happy Anniverary to Stephen King, 46 years ago the two of us married. So many memories have been made since then. Three kids, six grandchildren, each a blessing. So many ups and downs, mostly ups. So many challenges, mostly met. There is no other man I would have wanted to spend my life with and somehow I knew that the first time we spoke. I just wish I had taken notes along the way, no one would believe the trip we've had.
 Tomorrow is another doctor visit for Steve, checking on the rash from the chemo. He continues to be weak, but doesn't appear to have lost more weight. He was losing about 5 pounds a week following his treatments. The past week was difficult for him, my Uncle Bill, one of his best friends passed away. We have lost four family members this year and each visit to the funeral home seems to take a bigger piece of Steve. His own mortality being threatened, he suffers deeply at others' passings. The massacre in Connecticut was a senseless violent act which brought him and our nation to our knees. Steve cannot understand acts such as this against children, but who among us can? He has spoken of little else since Friday. I pull inside myself and keep silent, seeking Peace from faith in God.
Christmas shopping is finished, candy-making and baking this week, I'm hoping. I've learned not to write my plans in stone, but to bend like the willow. If the fudge and cookies get made, hurrah, if something else comes up demanding time and attention, so be it. I will not sweat the small stuff and baring breath and blood - it is all small stuff. Cancer teaches some lessons very well; you must change priorities to deal with it.
The Gagglefest was wonderful, fast and fun. Dex and Eden are perfect babies and I love them both to pieces. Seeing my grad girls was just what I needed, they are truly wonderful ladies. Mackenzie went along and had a good time listening to all our chatter and holding babies. My grandaughters growing up to become women like these would be a blessing. I could  proudly claim them all as daughters.
Stephen King plans for our boys to put a new metal roof on the house soon. A clay color like we put on the garage a few years ago. They will also rebuild the back porch and install a ramp. Maybe. I am hoping they aren't considering a deck instead of a covered porch. I want to maintain the bungalowe feeling of our house, not modernize it. But I may have a fight on my hands. We shall see.
Little is being accomplished around here, we go to doctor appointments, stay with Mom once or twice a week and attempt to keep the dirt out. We both are reading quite abit, but finding something to peak our interest is difficult. I find myself becoming more and more silent, not withdrawing but seeking strength. Take care. Talk to me. Bless us all.

Thursday, November 29, 2012

Another day, another side effect...

Hello Ladies,
      Stephen King is on a new treatment,  Alimta, and it is less devasting than the Taxol, but has its faults. He is weak as a cat, has trouble breathing and has a raging rash. But the pain in his back and chest has been abolished. He will probably have six of these treatments in the next four months, so it will be another long winter here. For me, the worse side effect is the depression which seems to have come with the Alimta. Steve has handled his diagnosis with his usual wry humor until lately. He is quiet, moody and quick to anger now. I cannot blame him, Heaven knows he has had his world cave in on him this year.
     On a happier note, Courtney flew home to surprise us on his first day of treatment. We have so enjoyed having her home. She has been a blessing to me and her dad. I've had cataract surgery on both eyes in the last two weeks and relied on Court for help. She has been our driver, chef and entertainment and we have loved every minute of it. She leaves on Saturday and we are sure to be in mourning for a few days after, I'm sure. OZ is so far from Indiana. But we've had a few family dinners, shopping days, doctor visits together to remember til we are together again. Thanksgiving at Trent and Nina's was wonderful, just wonderful. And we will have a big lasagna dinner before Courtney leaves with all our kiddos too. Have to make as many good memories as possible. Today we are having a "girls' lunch" at the Winery. I have to jump in the shower and get glammed up right now! If that is possible with a black eye, saggy skin and a head full of silver hair.
     My Gaggle of Girls is attempting a get-together on Saturday in Indy after I drop Court at the airport. I will need this to help get me through the sadness and I cannot wait to see all my girls again and meet a couple of new little goslings. Nothing like babies to raise the spirit.
     Talk to me, Hedy

Friday, November 9, 2012

GOOD NEWS/BAD NEWS

Hello all,
Stephen King saw Dr. K on Wednesday to get the results from the CT scan. The good news is the liver and pancreas look clear, the bad news is the tumor in his spleen has enlarged alot as ha the lung tumor. He will have a bone scan on Tuesday to assess the bone tumors, since he is having increased back pain. A new regiment of chemotherapy begins on Wednesday morning. So begins The Battle II. The new drug shouldn't cause the hair loss he had with taxol, but might cause nausea, vomiting and blood disorders. He hates to vomit (but who doesn't), and after the last experience isn't thrilled to get started. But he is a good patient and does what the doctor orders.

Another bit of good news- he felt good enough to go coon hunting with his friend Joe last night. He wasn't able to go any last year and has been so excited to hunt this season. Luckily, Hoss and Bruce, the coon dogs, didn't run the hills of Northwest township, but stayed on the few strips of flat, walkable land. They treed a couple of raccoons, barked their lovely barks and returned to the truck to be easily reloaded. Only a 2 hour hunt, but it meant the world to that old man and his dog. They were buddies out on the hunt once again. I do believe Hoss was smiling when they got home, I know Steve was. Of course that outing cost him, his back is really screaming this morning, but he is laughing as he recounts their big adventure to me over our coffee. It is the little things that give us such joy, Ladies, don't forget this. We mustn't wait for the big events, but should enjoy these little moments. Look for the fleeting, sweet snatches of happiness each day. Life is full of them if we keep our eyes and hearts open. 

All of the news happened on Stephen King's 67th birthday, by the way. Happy _ing Birthday, huh? But yesterday we celebrated with The Sisters at Hagens, our favorite restaurant on the famed Valley Hill Course. The Sisters are, of course, Steve's four older sisters. For the uninformed, Stephen King is the only boy in a family of six kids and is younger than all but one of them. Certainly the Special Golden child, presented to his father upon his return from WWII. A beautiful red haired wonder, according to his oldest sister who remember his birth as the Second Coming. My in-laws had six kids in seven years, I'm not sure how any birth can be remembered. The girls and Steve have monthly lunches together since they have all retired and look forward to seeing each other and sharing old times. Steve becomes the brunt of lots of jokes when all these girls get together and he loves it. I've always been included as one of the girls in this family from day one. And day one was many, many years ago. In December, we will have been married 46 years. Shocking, I know.

Our family is shaken by the latest development, but not down and out. Mackenzie continues to recover smoothly, Mom continues to decline, life goes on as it should. Courtney and Ken won a tremendous amount of money on a series of horse races in OZ and they are as giggly as children, offering to fly us over (down under?) when her dad feels up to the long voyage. I'm working on passports, but keep dropping the ball and having to start over. So far it has taken me three years and I'm not getting past the entering info stage.  We both want to see where Courtney makes her life now, but cannot fully imagine being there. Or flying there, 24 hours inside a metal tube, thousands of feet in the air, at breakneck speed. Yes, Xanax will be in use, and maybe alcohol. We are both inclined to sleep after a glass of wine so maybe it won't be too stressful.

Oh Ladies, the chores are calling, vaccum is sitting in the parlor, laundry is in the basket, I best break up the party and return to my real life. :-). Talk to me.
Love to all.

Wednesday, October 24, 2012

Vacation report, Down to the Sea

Hello all, I can't believe it's been a month since I've posted here, but it has been a busy October. Actually the kids and I returned from 10 days in Florida late Sunday night. After our long challenge of summmer, we really enjoyed the peace and serenity of the coast. I slept with my bedroom door open to listen to the waves hitting the shore. The birds were amazingly vocal, I don't remember them being so chatty during my spring or summer visits. I love listening to birds calling back an forth to each other. The weather was just about perfect this trip, October is THE month to vacation on the Gulf Coast. We sat on the beach more than ever, spent time on the decks and even watched the meteor shower laying on the pool deck. A new experience for my grandkids, a couple of them (no names) freaked abit in the dark.
You can bet it wasn't Madeleine. That girl has nerves of steel. One night Trent found a tiny gecko under his bathroom sink, Maddie was amazed that his underside was transparent and his heart and intestines were visible. The others were grossed out by the little guy. Not surprisingly he had lots of cousins outside, on the drive, the garage door, the pool... Gavin and Caleb loved the jungle-like yard surrounding the house, they are very into Army games. They wore camo most of the time we were there. Full fatigues, helmets, shorts, hiking boots and t-shirts, they stormed the beach, then stripped down, jumped into the pool for SEAL training. Not since our boys were that age have I seen such action. Even Maddie couldn't keep up with them. Trent and Nina took the 3 littles on a geo-caching adventure that lasted all day, they even visited an old cemetary which held the spirits of the victims of a malaria epidemic which wiped out Post St. Joe a couple of centuris ago. This is according to the Ghost Radar on Trent's Smart Phone!!!
Mostly we just relaxed, ate and breathed in the sea during our vacation. Caleb was spitting on the beach and Shawn told him to stop, he replied, "I have to Mom, my mouth is full of the sea". I loved that. Full of the sea, indeed. That is exactly what I needed; to be full of the sights, the smells and the sounds of the sea. Weird, since I have always been afraid of water, but I feel able to breathe when at the edge of the sea. At times I feel as if my lungs will burst, needing that wind in my face and yet I'm landbound here in Indiana for all but two or three weeks a year.
Steve has been having daily back pain but has controlled it fairly well with OTC meds. The neuropathy in his feet continues to be his worst complaint and the tiredness. Even after eight months without chemo his strength has not returned. Facing another round really concerns us both. Today he had to cut his walk short because he was short of breath. When I question him about how he is feeling, he laughingly says, "I think I have cancer or something bad".  His feeble attempt to convince me he isn't worried. After all these years together, he still tries to protect me.
Mackenzie had a check-up in Indy today, great news she can now wait two months between trips. She will continue the weekly labs and all her meds but this is a big step. The child has been to Riley or IU Med Center every month for over nine years. She has had a rapid weight gain that is normal for transplant patients. Today they told her to walk more and begin some exercise. She isn't thrilled by the idea of working out, she is as non-athletic as her gma. Poor girl. But all is good, she will do whatever she has to do. Strong genes in this girl. Bless her heart.
Poor Mom continues to lose reality plus her physical health seems to fail each week. We share taking care of her with mixed emotions, my sister, aunts and I hate to leave her but have to get rest and relief from the strain being there brings. While our brothers deny the depth of her illness and breeze in and out refusing to admit to themselves that we are losing Mom. It hurts so much to see their hurt. They have both shared a special relationship with her, one her first born son, the other her baby boy. Life is hard, my friends, you have to be strong. And sometimes being strong is the pits.
Sorry, this wasn't meant to end on a down note. Day-to-day we are ok and God is good. Love.

Saturday, September 22, 2012

Back to the Battle

It sure is beginning to look like fall in Southern Indiana this week and I am glad. This has been such a long, hot, dry summer it is a relief to see it going. Of course we don't know what fall and winter hold for us either. Hopefully a return to normalcy... maybe. I just don't do well in heat, but have been loving the bright, cool days we have had this week.
Stephen King's PetScan revealed more cancer in his spine, which explains the discomfort he has been experiencing lately. But the good news is the lung tumor is unchanged. Dr. K says we will continue with the support drug regime for 6 weeks then get another scan to access the situation. He will probably need another round of chemo by year's end. She cannot use the Taxol from his last treatments and we are glad. Finding a new combination of drugs should be simple, but we won't know how he will be affected by them. Just praying the effects will not be as devastating as the Taxol. Steve feels good and is now walking ove a mile at a time each day. Hank loves their outings and is learning not to pull him down the road too fast! The neuropathy in his feet is still an issue, but Steve walks anyway. He is so tired of being held back by this, he pushes past the pain. Then he rests most of the afternoon. He has gained so much weight since his appetite is enormous. The last weigh-in really got his attention and he has cut back on his cookies abit. Still loving his pie and persimmon pudding though. The doctor doesn't recommend losing much weight with chemo looming over him. He will need that to help fight. Oh, cancer is such a challenge, I cannot find a word which describes what it is. Stephen King says, "it sucks", but I do not think that is a strong enough sentiment. My sister calls it "Evil", and it is that. It certainly calls for flexibility, you have to be ready for anything all the time. I've always considered myself as a go-with-the-flow gal, but sometimes feel stressed by the requirements. Poor Steve doesn't like change and struggles with the reality of his situation. He holds on to the hope his case will be the exception to the rule. It may, but we do not know that and have to be prepared for anything required of us to ensure his health. Sometimes we both want to choose to flee instead of fighting, but we will not.
The kids and I are going to Cape San Blas in October since we didn't get a vacation this summer. We are all so anxious to be back on the beach. This time our house is next to St. Joseph State Park, as well as oceanfront. The Bay will will to our back and we can explore all the hidden places. Our little boys love this,  finding shells and crabs and even bigger sealife while wading in calm water is exciting. I once caught a horseshoe crab with my sandal. Surprised us both, but Gavin thought is was sooo cooool. Steve and Stephen say they aren't going, but we are still working on that. Stephen has a blacksmithing committment that he needs to keep and Steve just doesn't like Florida. So it is Gma and the girls and boys and we love it.
An organization in the county is having a Benefit for Mackenzie tonight to help on her medical expenses. Orange County has the biggest heart in Indiana. People have been so supportive through all of her trials. The Benefit has an Ice Cream Social theme, local musicians and a silent auction. Several friends are singing or baking cakes or donating items for auction. It should be a wonderful evening. I have made three cakes to add to the 27 made by others. The local Hardees is donating all the ice cream, Lisa and Denny are good people, always there for others. Next weekend the group has a Benefit for the wife of the high school football coach who has been hospitalized for months with something they cannot diagnose. No one ever seems to tire of helping others in need. I love small towns.
Our boys are doing well in school, inspite of a shaky start for Caleb. He had an emotional summer and wasn't quite sure Mom and Kenz would be OK at home without him. It only took a few days for him to settle in and he really likes his teacher and classmates now. Gavin protests, as always, that he doesn't like school, but he is an excellent student. This year his teacher is a lovely young woman I had as a student. She was always a favorite of mine, bright and responsible. She has grown into a creative and loving teacher for my youngest. Madeleine struggles abit with 7th grade, as we feared. The junior high isn't ready for our fuzzy haired, non-speaking sweetie, with her ADD, OCD, MMI issues. Poor baby takes her own temperature daily just in case she can stay home. Maddie has always loved school and it is heartbreaking to witness her dread of going to school this year. We have considered home schooling, but Madd thrives on the interaction with other kids and it wouldn't be fair to take that away. She can learn and do her work but needs so much more time to process info because of the communication disorder. Shawn called a Case Conference a couple of weeks ago and thought everything was settled but someone dropped the ball and we seem to be back to square one. Please share any bits of advice you might have for us. By the way, I really hate Indiana's new education path.
Lots to do today to get ready for the Benefit, I'd best get out of this chair and get to work. I miss you all and hope we can get together soon. Talk to me, Ladies. Love

Thursday, August 30, 2012

Good morning all, sorry to have been away for awhile. Our lives are returning to a somewhat normal order. Stephen King is much better after months of foot pain from neuropathy. He has tried acupuncture, increased meds and worn Crocs and something is working :-) Although he has regained his hair and weight, his strength hasn't returned and he spends most afternoons resting. But he can mow and walk abit in the mornings which is wonderful. Another PetScan has been scheduled for next week to check out the tumor situation. We feel that all is well, but do get anxious waiting for results. Please keep him in your prayers.
Mackenzie is thriving in these weeks following the transplant. She has progressed to clinic visits every two weeks. The most obvious change has been in her weight gain and color. For so many years our redhead has been a pasty green hued shadow of herself, but is now glowing peaches and cream. She's gained around 10 pounds and no longer wears Madeleine's clothing. She is tickled to be back into a small junior rather than a girls 12. She will probably start at Hanover second semester, but maybe at IUS. The insecure feelings which persisted all during her illness haven't completely gone. Leaving home is a big deal for any college freshman, but for Mack it is a major change. She has made their home into her secure haven, keeping out fears of hospitals, medicines, and illness. Stepping away from home and parents will be a giant leap. I pray she will take that leap into her new independence and experience life.
Our mom is experiencing some heart failure, we have an appointment with her cardiologist today. She continues to retreat into the past and have pain from arthritis, making her days a slow circle repeated again and again. Keeping closer and closer to home, she refuses offers to eat out or visit family. Our world shrinks with hers and we require quiet time to recenter ourselves after our shift with her. My aunt, sister, sisters-in-law and brothers have been so supportive of Mom, it is heartwarming to watch and be part of.
Janelle messaged us of Brian's accident, we are praying for them all. It sounds as if this may be a long process of healing and restoring. Eden will benefit from having both parents at home all day, that is for sure. I don't envy Janelle the duty of nursing Brian, from experience I know the quirkiness of a sick male. All commonsense seems to leave them. They want to Overdo and then Whine about the repercussions. Don't want to be trouble but insist on meals in front of the TV and speaking of meals; they never want to miss one. Even if their day is not 6AM to 6PM during their recovery, three meals and two snacks are a strict requirement. Good Luck, Sweet Girl. Stand strong, it may be a lonnnngggg fall.
Seriously, I do wish we could all get together while Janelle is on maternity leave. It has been so long and there are now 3 little goslings I haven't seen. Caleb, Dexter and Eden. I watch on FB how Avery and Olivia,  Abi and Sam, Trent and Jordan, and Kendra are growing but would love to see them again too. As well as Elaine's other 3. We really need to get her on FB, just to post pictures!
Take care, my friends. Talk to me. Hedy

Monday, July 23, 2012

Life Is Good!

Hello, we are good here. I'm so excited to get to Stephen's house each morning and see my girl. Kenzie is a new person 10 days out from surgery and the new kidney is kicking butt! Her eyes shine, her voice is strong, her face glows, she laughs, she doesn't cough or gasp for breath, she is WELL.
I cannot thank our God enough for this blessing. For nine years, we have watched this child struggle and succeed inspite of her illness. Now, hopefully, the way will be easier for her, the path happier, more exciting. I cannot wait for her to experience life. Kenzie is a special person; strong, full of grace and humor, intelligent and witty. She is going to make a difference in this world, I know God has special plans for her.
Poor Shawn (The Donor) isn't having an easy recovery. She has many incisions and insults to her body. It is more difficult to remove a kidney from a healthy body than to place it into a weak one. She also had a hernia repair done which is major on it's own. Still Shawn is our hero and if she needs more time to heal, more pampering will be hers. I try to push fluids and good food, but so far she isn't very interested in much more than her bed. She was blindsided by the reality of surgery and recovery, never having been a patien before. Mama Shawn has been a rock throughout all the trials her kids have experienced, never faltering, head up, smiling strong. I know she needs tough love to get up and at'em but my maternal side wants to rock her in my arms and spoon feed her ice cream. Stephen is amazing with them both, especially Shawn. He can encourage her to get up move, eat, walk, whatever she needs to do.
The only creature I can bully is Lucy the dog. She think I am the wicked witch. I've kept her from jumping on the girls, eating from dinner plates, the waste baskets and my hand. She has seen more time outs since I've been there than in her full 5 years. She has been the Queen of the household til now. Gma Hedy is showing her a whole new world. Heeheehee.
Kenzie has Clinic in Indy each Tuesday and Friday to keep check on her meds and kidney function, Stephen King and I will be taking her tomorrow. We have to be there at 7:00 AM for labs. Then she can have breakfast and her meds before seeing doctors at 10:00. We will get used to this routine eventually, but this week it will be a challenge, I'm sure.
Mom continues along her path with Alzheimers, losing more each day, living more in the past. My sister, brothers, sisters-in-law and aunt are taking up the slack while I attend to my girls. Soon we can get back to the routine of 24 on once a week. I did run over for a couple of hours on Saturday to visit with Mom and my brother Mike. I explained again about the transplant and how great the girls are doing, but Mom forgets before I'm finished and we replay it once more. Sad, sad, sad.
Stephen King is doing well, proving yet again he can take care of himself while I'm elsewhere. My house is clean and calm when I return each night. He cooks and cleans the kitchen after his meals, aweeps the floor and has the AC on for me. Our new washing machine has him over a barrel. But I can handle the laundry as long as he keeps the kitchen clean! Five years ago, he would not have done anything but fix sausage n eggs and leave his mess. My man has grown so much since retirement. Steve has lots of foot pain from the neuropothy but otherwise is feeling better. The doctor has changed his meds and we hope to see improvement soon. He is determined to beat this too.
We did get a rain last week, so the garden is bouncing back abit. We've had some tomatoes and peppers this weekend, which were wonderful. The corn and green beans are probably shot and our sunflowers are blooming while only 3 feet tall. Some cosmos are budding but the marigolds and zinnias I sowed haven't made a showing yet. My flower row is pretty skimpy this year. But it will be better next year, I'm sure. God is Good All the Time.
Keep in touch, Ladies.


Sunday, July 15, 2012

Blessed

Oh mm goodness girls we have had such a beautiful blessing this weekend. Mackenzie received her moms kidney on Friday and they are both doing well. Docs are pleased with Mack's progress but Shawn has had terrible pain and bad reaction to meds. She may be released tomorrow but will go to hotel across from Med Center. her mom will stay with her there until she feels up to staying with Mack or until Mack is released. Zgod is good, Ladies, all the time. never doubt. Love Z

Wednesday, June 27, 2012

Turning a corner...

Hello,
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

Improvement

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.

Friday, May 25, 2012

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.

Saturday, May 5, 2012

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

Thursday, March 22, 2012

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

Tuesday, March 13, 2012

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. :-(

Thursday, February 16, 2012

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

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

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.

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