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.
Wednesday, October 24, 2012
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
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
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.
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
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
Stephen King had a full body Pet Scan yesterday and we will get the results on Wednesday when we meet with Dr. K. He has regained all his weight plus 10 pounds. He has no back pain at all and is slowly regaining strength. The chemo damaged the nerves in his hands and feet and he suffers pain when he is on his feet, but says its a good trade for bone cancer pain. If he gets an all clear on Wednesday, I believe a weight loss program may be in OUR future. I've needed that for years, but it will be his first experience. Not a fun thought :-(
My mom is actually much better this week. Her pain level has definitely improved and with that she has become more alert and more like herself. It is such a blessing for her to feel better. My sister and I will be the only caregivers for a week or so, as our brother and sister-in-law are vacationing. And we are excited to see what progress she makes each day. We will deal with any regression as it happens. I feel much stronger this week after a few days rest and with her improvement.
Steve and I worked in the garden and flowers this morning, boy oh boy I am out of shape. The heat gets to me so quickly; the sweat pours down my face, my hair gets drippy wet, and I become quite cross! Stephen King handles heat well, it is the bending and stooping that gets to him. We make a comic pair as we hobble around, wiping sweat, favoring knees and feet, trying to weed and feed, trim and deadhead, harvest and plant. Thank Heaven the lawn is too dry to mow today. We would have needed the EMTs. Hard to imagine we used to farm abit and put up hay with just our young kids help. Aww to be young and strong again. I have really enjoyed most stages of our lives and the farm years were among the best. This little bungalow with its 3 acres is a all we need and all we can care for at this stage. Our son and daughter-in-law live at the farm now and keep the sheep fed and watered. Steve visits most days to monitor them and check for problems. Life isn't a constant, but a changing tableau. We learn to be willows not oaks, bending with the wind not cracking under the storm.
Nine months into the journey with cancer, we begin to deal with the realities of the financial cost of disease. Any inquiries to billing departments or insurance companies have been met with, "it will work out, it is too early to be concerned about your balance yet, your file is still too active to answer those questions". Oh really? Now everyone wants their money and the insurance company is dragging its feet on payment. I have read horror stories about this, never thinking we might ezperience it. Two hours on the phone this week have done little to reassure me that we won't have a big bill to pay off later. Medical costs and insurance charges are completely outrageous, as everyone knows. One drug, Steve gets every three weeks costs $23,000 each use. Yes, I said $23,000. Every three weeks for 9 months with no end in sight. And that is only one of the many drugs he takes. And we have very good insurance and Medicare. I appreciate that these drugs are helping to keep my husband alive, but really why do they cost this much? Who is making a profit from them? And how much profit is anyone allowed to make on the lives of others?
As I remind Stephen King, they can't eat us, so we will just keep taking a day at a time and keep praying for Grace.
June is my favorite month, hope you all are out of school and enjoying it. Playing with the kiddos, gardening, grilling out, picnics, 4-H, swimming, enjoy it all. Hope we can have a Gagglefest soon. I will drive anywhere if I can work in a free day. Or we could do Indy, IU Med Center is close to the Park on the river. LOL
Talk to me, Ladies. Love, Hedy
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