I started on Friday, getting stuff out of the attic and filling up the entire living room with it. I grabbed my partner in crime (grandson Stephen) and out the door we went to decorate the world. Stephen climbed to the roof and strung lights, climbed very tall ladders to do the very top of the peaks and all the windows and then came down to the ground to throw all the bad bulbs into the street to make popping noises!!!! I must say it did sound neat but he wasn't too happy when I handed him a broom and made him clean up the broken glass!
HE and I got all the ladder work completed on Friday and I finished up the ground work yesterday - just before the really nasty rain storm. I'm waiting for the borough to remove the leaf piles from in front of my house so I can finish the fence posts with lights, ribbon and garland. then the outside will be done. The hard part follows when I have to get the trees out of the attic (We went to a fake one out of deference to George....yuck) and all the inside decorations. ....It means I really have to do a thorough housecleaning and I just don't feel like it!
I guess putting out my good stuff on top of dust and stuff wouldn't work out too well soooooooo guess what I'll be doing this weekend!
The Kid wants anything electronic so his shopping will be easy. My son's gift is already on its way to his duty station and my husband doesn't want me to buy him anything. Well, after much thought, I decided to honor that request....I took a large mason jar, painted a country scene at the base of it, printed out the word NOTHING on cardstock paper and used pinking shears to cut it into a oval and then placed it inside the jar. I placed some cotton batting and cloth around the lid part and twisted the metal ring down tight on that jar. Now He can have "nothing" for christmas - all wrapped up in a pretty, hand painted decorative jar! My daughter had better not utter those words "I don't want anything" or she'll be getting a jar of nothing, too!
Wishing all you bloggie buddies who are doing the ho ho ho decorating a great warm day to do it and no lip from anyone about it!!!
Huggz to all
Quieten
Friday, December 3, 2010
Thursday, November 25, 2010
As you probably know, last month the PET scans and MRI's came back with a positive result for the return of George's laryngeal cancer. This time they also found some suspicious spots on the liver. The doctors told us it didn't look good and ordered more testing to be done.
So-off to do more scans and biopsies, more waiting and more sleepless nights. His Dr. wanted this set of tests done at the hospital's radiological facility, not at our local center where the original tests were done. Back over the bridge to the city we went.
Even though we've been going there almost 2 years now, and are very familiar with most of the complex, we managed to end up in a section of the hospital we'd never seen before. I felt like a rat in a maze. "Down the corridor to the big corridor, make a left, a quick right and then just follow it around to the end," the receptionist said. "You can't miss it." Yeah....right!
We spent more time making lefts and rights and backtracking than it took to do the actual tests! It was so funny! We got lost again trying to get out of the building. I think we both have lost our internal GPS. Hmmm-could it be we're just (dare I say it )...aging?
After almost a month of playing "The Waiting Game" we got a call Tuesday telling us that all of the tests are negative; the spots that showed up on the scans are from the way he is healing and from using his new voice prosthesis. For the time being the Dr is saying all is well! They're just going to do follow-up testing more often for the next year. I think we'll be doing all of those tests in the city. Besides the better testing, I'm up for the challenge of learning to navigate "THE MAZE.!
HAPPY THANKSGIVING Y'ALL!
So-off to do more scans and biopsies, more waiting and more sleepless nights. His Dr. wanted this set of tests done at the hospital's radiological facility, not at our local center where the original tests were done. Back over the bridge to the city we went.
Even though we've been going there almost 2 years now, and are very familiar with most of the complex, we managed to end up in a section of the hospital we'd never seen before. I felt like a rat in a maze. "Down the corridor to the big corridor, make a left, a quick right and then just follow it around to the end," the receptionist said. "You can't miss it." Yeah....right!
We spent more time making lefts and rights and backtracking than it took to do the actual tests! It was so funny! We got lost again trying to get out of the building. I think we both have lost our internal GPS. Hmmm-could it be we're just (dare I say it )...aging?
After almost a month of playing "The Waiting Game" we got a call Tuesday telling us that all of the tests are negative; the spots that showed up on the scans are from the way he is healing and from using his new voice prosthesis. For the time being the Dr is saying all is well! They're just going to do follow-up testing more often for the next year. I think we'll be doing all of those tests in the city. Besides the better testing, I'm up for the challenge of learning to navigate "THE MAZE.!
HAPPY THANKSGIVING Y'ALL!
Wednesday, October 20, 2010
How quickly things change
“Sorry, honey- I wish the news was better.” Even though I read the written report, pored over the PET and CT scans, had seen the tell-tale reddish-yellow hot spots and obvious black dots, I still did not want to hear those words. It took my breath away. I so wanted to believe that I had misread the words- had not understood what I saw. I should have known the results weren’t good. It was raining. It rained the day George was first diagnosed, on the day of every surgery he had and on the day my father died. Bad news, rain and the two of us....not a good combination. George's cancer has returned. The round-robin of surgeons, oncologists and tests of every conceivable type has begun. We wait again.
This time the wait is different. This time we have some knowledge of this disease. We’ve been here before and some of the fears have already been faced. But there are new fears to be conquered and new questions to ask. The wait is different…but, still…it is “The Wait.”
This time the wait is different. This time we have some knowledge of this disease. We’ve been here before and some of the fears have already been faced. But there are new fears to be conquered and new questions to ask. The wait is different…but, still…it is “The Wait.”
Sunday, October 3, 2010
I'm back...I think !
The last time I posted I had just finished planting the beginnings of my summer flower garden.
Now, summer is gone, the flower beds are prepared for the long, cold winter ahead and I have found some time to finally touch base with all those I’ve kept in my thoughts, prayers and heart all summer long.
After 10 years of dating, my daughter and her fiancé finally decided to “take the plunge” and were married in July. Of course, once this decade long decision was made they made up their minds that the wedding had to be this summer. And the whirlwind began! To make a long story short – we pulled together a wedding (with all the trimmings) for over 200 guests in less than 3 months! It was wonderful, she was beautiful and I am still exhausted!
George handled the wedding day very well. It was so hard for him to put himself in the public eye and he was very apprehensive. While not her biological father, George is Christi’s father in every way a man can be. She wanted him to walk her down the aisle but he was not strong enough. Her brother and her son did the honors. At the reception there was a notecard placed at everyone’s seat telling them that instead of wedding favors a "donation was being made in George’s name to the Head & Neck Cancer Center because without them her Pop would not be here to share this day with her." When she saw that George was getting tired she talked with him and made the decision to forgo the father-daughter dance. To her it was more important that he be there with her and be able to stay for the entire celebration. Her thoughtfulness allowed him to stay for the entire reception- a memory they will have forever.
His physical recovery has been excellent but his mental and emotional recovery is taking a while. We heard about Chemo brain – but I wonder – is there a Radiation brain?
During all of the wedding preparations there was also sad news. Two friends lost their battles with cancer and on July 4th, my cousin was diagnosed with stage 4 colon cancer. She is now facing life’s hardest challenge and with very little insurance coverage her battle is that much more difficult. Her sister is her caregiver, and I hope that, through my experiences this past year, I will be able to help her help her sister.
So, my dear blogger friends , I am off to read your blogs and catch up with you all. I hope the summer has been kind to all of you , and, while I have not been in touch, you all have been in my thoughts and my prayers.
Now, summer is gone, the flower beds are prepared for the long, cold winter ahead and I have found some time to finally touch base with all those I’ve kept in my thoughts, prayers and heart all summer long.
After 10 years of dating, my daughter and her fiancé finally decided to “take the plunge” and were married in July. Of course, once this decade long decision was made they made up their minds that the wedding had to be this summer. And the whirlwind began! To make a long story short – we pulled together a wedding (with all the trimmings) for over 200 guests in less than 3 months! It was wonderful, she was beautiful and I am still exhausted!
George handled the wedding day very well. It was so hard for him to put himself in the public eye and he was very apprehensive. While not her biological father, George is Christi’s father in every way a man can be. She wanted him to walk her down the aisle but he was not strong enough. Her brother and her son did the honors. At the reception there was a notecard placed at everyone’s seat telling them that instead of wedding favors a "donation was being made in George’s name to the Head & Neck Cancer Center because without them her Pop would not be here to share this day with her." When she saw that George was getting tired she talked with him and made the decision to forgo the father-daughter dance. To her it was more important that he be there with her and be able to stay for the entire celebration. Her thoughtfulness allowed him to stay for the entire reception- a memory they will have forever.
His physical recovery has been excellent but his mental and emotional recovery is taking a while. We heard about Chemo brain – but I wonder – is there a Radiation brain?
During all of the wedding preparations there was also sad news. Two friends lost their battles with cancer and on July 4th, my cousin was diagnosed with stage 4 colon cancer. She is now facing life’s hardest challenge and with very little insurance coverage her battle is that much more difficult. Her sister is her caregiver, and I hope that, through my experiences this past year, I will be able to help her help her sister.
So, my dear blogger friends , I am off to read your blogs and catch up with you all. I hope the summer has been kind to all of you , and, while I have not been in touch, you all have been in my thoughts and my prayers.
Sunday, May 23, 2010
Today was my day to hide from the human world and embrace the plant world.
Once I was out of bed and moving I decided that this was the day I was going to get my yard in order. I’d let it fall behind last year and it was really looking unloved.
I ran down to our local garden center and picked out some flats of white and red impatiens, got a few bags of Miracle Gro dirt and purchased some beautiful hanging plants for the front porch.
Everything made the ride home in my pick-up truck without too much damage and I started right in.
First, I had to scrub down the outside walls of the house – they were so icky. What a treat that was! Soapy water running down my arms, underneath my shirt and settling around the waistband of my jeans. Brrrrrrr…the hose water was like ice! Finally finished with that and started cleaning off the front porch, walkway and driveway. Ah yes, another chance to become soaked to the bone. Sneakers squishing with every step and jeans bottoms that weigh a ton. Now I can get onto the good stuff…
All afternoon I planted impatiens, petunias, zinnias and geraniums. I made some beautiful planters with the zinnias and a gorgeous geranium basket. I arranged the impatiens all around my front bushes and the back garden. I even put some in the baskets that sit on the porch railings! Everything is going to be beautiful in a few weeks!
I got so carried away that before I knew it I was trimming the unruly hedges and pruning the crazy pine tree in the front yard. That lead me to the holly bushes –they really needed a haircut—and finally to the fir trees by the fence. Everything got a haircut or a trim. I even decided to mow down the tiger lilys that grow wild in the back yard. Usually I wait til they finish blooming but, not today!
Now I’m sitting here moaning that everything I own hurts. My wrists, knees, shoulders and ankles are telling me that I am not 20 anymore. Funny- but my brain told me all was well and the rest of my body said – “sure, go ahead no problem!”
I’m headed to the tub to attempt to get the dirt out from under my fingernails and the tree pieces out from my hair. Then – onto a good night’s sleep so I can once more go get more dirt and more flowers and have more fun tomorrow. That is...If my knees , ankles, hips and wrists will let me out of bed!!!!!
Once I was out of bed and moving I decided that this was the day I was going to get my yard in order. I’d let it fall behind last year and it was really looking unloved.
I ran down to our local garden center and picked out some flats of white and red impatiens, got a few bags of Miracle Gro dirt and purchased some beautiful hanging plants for the front porch.
Everything made the ride home in my pick-up truck without too much damage and I started right in.
First, I had to scrub down the outside walls of the house – they were so icky. What a treat that was! Soapy water running down my arms, underneath my shirt and settling around the waistband of my jeans. Brrrrrrr…the hose water was like ice! Finally finished with that and started cleaning off the front porch, walkway and driveway. Ah yes, another chance to become soaked to the bone. Sneakers squishing with every step and jeans bottoms that weigh a ton. Now I can get onto the good stuff…
All afternoon I planted impatiens, petunias, zinnias and geraniums. I made some beautiful planters with the zinnias and a gorgeous geranium basket. I arranged the impatiens all around my front bushes and the back garden. I even put some in the baskets that sit on the porch railings! Everything is going to be beautiful in a few weeks!
I got so carried away that before I knew it I was trimming the unruly hedges and pruning the crazy pine tree in the front yard. That lead me to the holly bushes –they really needed a haircut—and finally to the fir trees by the fence. Everything got a haircut or a trim. I even decided to mow down the tiger lilys that grow wild in the back yard. Usually I wait til they finish blooming but, not today!
Now I’m sitting here moaning that everything I own hurts. My wrists, knees, shoulders and ankles are telling me that I am not 20 anymore. Funny- but my brain told me all was well and the rest of my body said – “sure, go ahead no problem!”
I’m headed to the tub to attempt to get the dirt out from under my fingernails and the tree pieces out from my hair. Then – onto a good night’s sleep so I can once more go get more dirt and more flowers and have more fun tomorrow. That is...If my knees , ankles, hips and wrists will let me out of bed!!!!!
Saturday, May 22, 2010
My friend, Laura, died Tuesday after a long, hard, courageous battle with kidney and pancreatic cancer.
Seven years ago the diagnosis was kidney cancer with metastasis to the breast.She bravely had the kidney and the breast removed and began the cancer recovery journey, rarely missing a day of work while she battled the side effects of the surgery, chemo and radiation. After five years we gleefully and thankfully celebrated passing the big 5 mark.
Two years ago she began having unusual pains in her side. With all test results coming back inconclusive the decision to do exploratory surgery was made. After surgery we were told that nothing could be done and she was told to prepare herself and her family. They expected her life to end in about six months.
She never gave up. Once a week her day was spent hooked to an IV filled with chemo drugs. Her outlook was that the rest of the world had a 7 day week, she had a 6 day week…the trade-off was worth it. By this time she was working two jobs so missing a day’s work was not an option. There were concerts to attend (A Dave Matthews Band concert was never to be missed), plays to see and family events to be a part of. Her days were always filled with life and our days were always filled with her love.
About 2 months ago she and I had a long conversation about just letting nature take its course. She was finally tired of the battle and wanted to lay down her burden. That conversation was one of the most painful and, yet, one of the most rewarding, conversations I’ve ever had with her.
Over the past few weeks her grace and dignity has done more to help us come to terms with her decision than I think we helped her. After a week or so of some very difficult days, God granted her wish to lay down her burden and early Tuesday morning He wrapped her in His arms and took her home. This special, special lady lived life to the fullest, loved and was loved, and touched us all with her warmth. I will miss her dearly.
Seven years ago the diagnosis was kidney cancer with metastasis to the breast.She bravely had the kidney and the breast removed and began the cancer recovery journey, rarely missing a day of work while she battled the side effects of the surgery, chemo and radiation. After five years we gleefully and thankfully celebrated passing the big 5 mark.
Two years ago she began having unusual pains in her side. With all test results coming back inconclusive the decision to do exploratory surgery was made. After surgery we were told that nothing could be done and she was told to prepare herself and her family. They expected her life to end in about six months.
She never gave up. Once a week her day was spent hooked to an IV filled with chemo drugs. Her outlook was that the rest of the world had a 7 day week, she had a 6 day week…the trade-off was worth it. By this time she was working two jobs so missing a day’s work was not an option. There were concerts to attend (A Dave Matthews Band concert was never to be missed), plays to see and family events to be a part of. Her days were always filled with life and our days were always filled with her love.
About 2 months ago she and I had a long conversation about just letting nature take its course. She was finally tired of the battle and wanted to lay down her burden. That conversation was one of the most painful and, yet, one of the most rewarding, conversations I’ve ever had with her.
Over the past few weeks her grace and dignity has done more to help us come to terms with her decision than I think we helped her. After a week or so of some very difficult days, God granted her wish to lay down her burden and early Tuesday morning He wrapped her in His arms and took her home. This special, special lady lived life to the fullest, loved and was loved, and touched us all with her warmth. I will miss her dearly.
Wednesday, April 21, 2010
I read somewhere that the average person spends five years of their life waiting.
Recently I’ve spent a lot of time learning the art of waiting, and in a country that loves numbers, flow charts and power point graphics I wonder if there is a statistic for the average time spent waiting for intangible things.
Oh, I’ve spent hours and hours waiting on the phone or in a line somewhere. And, like my other linemates, I’ve rolled my eyes and sighed, standing quietly, resigned to my fate as a “waiter.” Occasionally I’ve been guilty of exhaling thru puffed out cheeks and grumbling about the wasted time.
I’ve rushed through life -- in a hurry to grow up, to have a career, to accumulate possessions. I didn’t have time to wait. I had to be there now; had to have it now; had to discover it now. Waiting was for those who didn’t have anything better to do or the wherewithal to seemingly bend time to their will. I looked at anyone patiently waiting and somehow felt superior. I had appointments to keep! I had a career! I had a life! I was going places!
Ah, the folly of youth.
Yet, even in middle age I still felt the need to hurry – to not wait. I couldn’t wait for that next promotion, for the kids to get bigger, for parties, vacations, the next new thing to come along.
I am now aware there is a huge difference between waiting and WAITING….
I wait at the deli counter
I ‘WAIT’ for the Doctor to call
I wait in the line that snakes around the corner at DMV
I ‘WAIT’ for my child to come home from his first solo drive in the car
I wait while a disembodied voice tells me “Your call is important to us. Please stay on the line - your call will be answered by the next available representative.”
I ‘WAIT’ for the call that says I’m a grandmother
I wait for my lunch order to arrive
I ‘WAIT’ for test results that may change my life forever.
Wait time is now something I look forward to. Waiting gives me time to stop the world for a moment. It forces me to just breathe; to take a moment to think, to reflect.
I’ve made mental apologies to all of those I had brushed aside or looked down on. I am somewhat ashamed of the ignorance and arrogance of my thoughts and youth. I now know the difference between waiting and WAITING – and I’ve learned to appreciate the wait.
Recently I’ve spent a lot of time learning the art of waiting, and in a country that loves numbers, flow charts and power point graphics I wonder if there is a statistic for the average time spent waiting for intangible things.
Oh, I’ve spent hours and hours waiting on the phone or in a line somewhere. And, like my other linemates, I’ve rolled my eyes and sighed, standing quietly, resigned to my fate as a “waiter.” Occasionally I’ve been guilty of exhaling thru puffed out cheeks and grumbling about the wasted time.
I’ve rushed through life -- in a hurry to grow up, to have a career, to accumulate possessions. I didn’t have time to wait. I had to be there now; had to have it now; had to discover it now. Waiting was for those who didn’t have anything better to do or the wherewithal to seemingly bend time to their will. I looked at anyone patiently waiting and somehow felt superior. I had appointments to keep! I had a career! I had a life! I was going places!
Ah, the folly of youth.
Yet, even in middle age I still felt the need to hurry – to not wait. I couldn’t wait for that next promotion, for the kids to get bigger, for parties, vacations, the next new thing to come along.
I am now aware there is a huge difference between waiting and WAITING….
I wait at the deli counter
I ‘WAIT’ for the Doctor to call
I wait in the line that snakes around the corner at DMV
I ‘WAIT’ for my child to come home from his first solo drive in the car
I wait while a disembodied voice tells me “Your call is important to us. Please stay on the line - your call will be answered by the next available representative.”
I ‘WAIT’ for the call that says I’m a grandmother
I wait for my lunch order to arrive
I ‘WAIT’ for test results that may change my life forever.
Wait time is now something I look forward to. Waiting gives me time to stop the world for a moment. It forces me to just breathe; to take a moment to think, to reflect.
I’ve made mental apologies to all of those I had brushed aside or looked down on. I am somewhat ashamed of the ignorance and arrogance of my thoughts and youth. I now know the difference between waiting and WAITING – and I’ve learned to appreciate the wait.
Sunday, April 4, 2010
Hallelujah
As I sat on my porch this Easter morning, wrapped in the warmth of the sun and the beauty of the day, I said a prayer of thanksgiving.
I thanked the Lord for the beauty that surrounds me, for the joyful sounds of the birds singing their melodious tribute to the day. I thanked Him for the wonderful flowers blooming, their resplendent array of color assuring the cycle of life and the resurgence of spring.
Most of my thankfulness was given to Him for the struggles that George and I have shared these long, hard months. Now, that may seem odd to be thankful for, but these times have brought about such an awakening in us. Something I am not sure we'd have ever been privileged to experience otherwise.
The days have been so very hard. At times the darkness seemed to encompass my soul. The fear, the pain, the unknown, all seemed to overwhelm me, wrap me in a dense fabric of despair from which I sometimes felt there was no escape.
But through it all I was learning. Humility, forgiveness, caring, strength, wisdom. All these things I thought I was already on board with took on new meaning.
I thought my heart was as open to my husband as it ever could be, but facing the fear of losing him and becoming his caregiver has expanded that love more than I could ever, ever have hoped for.
God - in His infinite wisdom - placed challenges in my path that allowed me to see George for the truly precious gift He gave me.
Oh, don't get me wrong - there were times when I could have willfully choked "The Commander" (as his friends and co-workers call him) for his actions and non-actions. There is nothing worse than trying to convince a hard-headed German male that something is good for him when he's already made up his mind against it.
We've faced so much together, entwining the fabric of our beings,strengthening the ties that have made us one and holding fast to the belief that we would get through this together. We are genuinely thankful for this special power we have been given.
It has allowed us both to overcome so much.
Yesterday, that special power, that faith, and that love was rewarded with the best of possible results. George's PET scan was clear - he is cancer free!
So, while the world - and I - celebrate the resurrection, the renewal and the hope, George and I are also celebrating Thanksgiving.
I think I'll have some Turkey with my Ham and green beans today :-)!
I thanked the Lord for the beauty that surrounds me, for the joyful sounds of the birds singing their melodious tribute to the day. I thanked Him for the wonderful flowers blooming, their resplendent array of color assuring the cycle of life and the resurgence of spring.
Most of my thankfulness was given to Him for the struggles that George and I have shared these long, hard months. Now, that may seem odd to be thankful for, but these times have brought about such an awakening in us. Something I am not sure we'd have ever been privileged to experience otherwise.
The days have been so very hard. At times the darkness seemed to encompass my soul. The fear, the pain, the unknown, all seemed to overwhelm me, wrap me in a dense fabric of despair from which I sometimes felt there was no escape.
But through it all I was learning. Humility, forgiveness, caring, strength, wisdom. All these things I thought I was already on board with took on new meaning.
I thought my heart was as open to my husband as it ever could be, but facing the fear of losing him and becoming his caregiver has expanded that love more than I could ever, ever have hoped for.
God - in His infinite wisdom - placed challenges in my path that allowed me to see George for the truly precious gift He gave me.
Oh, don't get me wrong - there were times when I could have willfully choked "The Commander" (as his friends and co-workers call him) for his actions and non-actions. There is nothing worse than trying to convince a hard-headed German male that something is good for him when he's already made up his mind against it.
We've faced so much together, entwining the fabric of our beings,strengthening the ties that have made us one and holding fast to the belief that we would get through this together. We are genuinely thankful for this special power we have been given.
It has allowed us both to overcome so much.
Yesterday, that special power, that faith, and that love was rewarded with the best of possible results. George's PET scan was clear - he is cancer free!
So, while the world - and I - celebrate the resurrection, the renewal and the hope, George and I are also celebrating Thanksgiving.
I think I'll have some Turkey with my Ham and green beans today :-)!
Sunday, March 21, 2010
Spring has sprung in George's world!!!
After I don’t know how many months of driving him back and forth to hospitals, doctors offices and other appointments, he got up yesterday, got himself dressed, grabbed his car keys (gasp!!) and took himself to get his bloodwork done! Whoo Hoo – HooRay---Yippee!!!!!
Even better, after he left the lab he decided to go to the local auto parts store, the bank and then he went to his favorite grocery store!
He picked up some odds and ends we needed at the house and wandered up and down the aisles, making a point of going to the office to see the owners (he used to always see these folks before he got sick) and speak with them. This is the first time he has actively sought out people he knows and the first time he's tried speaking to anyone outside of family and the medical community. He’s always avoided going where people who knew him before the surgery would be. What a big step he has taken. I am soooo proud of him and so very, very happy for him.
After I don’t know how many months of driving him back and forth to hospitals, doctors offices and other appointments, he got up yesterday, got himself dressed, grabbed his car keys (gasp!!) and took himself to get his bloodwork done! Whoo Hoo – HooRay---Yippee!!!!!
Even better, after he left the lab he decided to go to the local auto parts store, the bank and then he went to his favorite grocery store!
He picked up some odds and ends we needed at the house and wandered up and down the aisles, making a point of going to the office to see the owners (he used to always see these folks before he got sick) and speak with them. This is the first time he has actively sought out people he knows and the first time he's tried speaking to anyone outside of family and the medical community. He’s always avoided going where people who knew him before the surgery would be. What a big step he has taken. I am soooo proud of him and so very, very happy for him.
Monday, March 15, 2010
I need to apologize to all of you who have stopped by to check on us. I didn’t realize that it had been so long since my last post. It seems such a short moment since radiation stopped and recovery truly began.
In that time span some of the following things have popped up:
I was rooting through the sample bag the speech therapist sent home with George. In there were round and oval stickeys with a hole in the center and little plastic and foam buttons that snap into them (now I know they are called baseplates!). Ah…this is what the speech therapist was explaining. She said they just peel and stick. Ok- I peeled the backing off, stuck it on his neck, put the little button in…and watched as he tried to talk and blew the whole contraption clear across the room! Seems there is a liquid adhesive that goes on first to help the stickey stuff stick!!! An ah-ha moment if ever I’ve had one.
Somewhere in the back of my brain I thought that once the radiation burns went away and the IV fluids stopped that all would be well. Ummm Hummmm……did I really believe THAT?!?!?!?!?!?
Fighting – and pleading, and begging, and crying – with the insurance company is becoming a way of life. If they aren’t denying a claim (it’s still a NO for the teeth replacements) they are only agreeing to cover partial payments on the medication. Their opinion was that George only needed to take a certain medication every other day. I won that argument – and boy, was I proud of myself. I did it all without one curse word … not a hell or a damn or anything else that was on the tip of my tongue!
Our 15 year-old grandson decided to try longboarding (a form of skateboard) down an ice-covered street, got caught up on a chunk of ice, fell, slid across about 30’ of roadway, ripped the skin off his arm and wrist and tore the ligaments in his knee. He and his friends were filming it … something only a bunch of 15 year-olds would do…and once he was released from the ER he had to email me the footage. I think I liked it more when I couldn’t see what they were doing!
My apologies to all that live in a cold climate but I have realized that I never, ever, want to live in Alaska, Maine or anywhere else that has true snowfall. Sitting around a warm, cozy fire while snow fell outside and blanketed the world in soft white down was always a fantasy of mine. Now that I have experienced 40+ inches of snow in less than 3 weeks I can honestly say the fantasy is over! I live near the ocean for pete’s sake – not North Dakota!!!! I’ve also noticed I am way toooo old to shovel snow!
Caregiving and snowstorms do not make for smooth sailing…unless, of course, one considers sliding across the bridge from one state to another to visit the surgeon sailing!
There we were, a man that can’t speak and sooo wants to, and a woman saying things that probably shouldn’t be said by anyone, sliding sideways over the bridge and through the snow; 4-wheel drive be damned, a death grip on the wheel, and a husband trying to mime how to handle the slide. Yep- I am not moving farther north…never……ever!!!!!
George is on the road to recovery. I think he is recovering faster physically than he is mentally. He is so very, very tired, still in a lot of pain and still learning how to adjust to all of this. Sometimes he wants to give up and then he has times where he can see better times ahead. The one-day-at-a-time approach is the only thing I know to help him through.
Thank you, all of my wonderful blog friends, for all your continued support for both of us. I have thought of all of you often and you are always in my prayers. I go about my day and think “Ah, I’ll have a chance to catch up tonight,” and then I get caught up in the minutiae of the day and before I know it days and days have flown by.
Now, I am going to post this and go visit your bloggie homes and say HI!
In that time span some of the following things have popped up:
I was rooting through the sample bag the speech therapist sent home with George. In there were round and oval stickeys with a hole in the center and little plastic and foam buttons that snap into them (now I know they are called baseplates!). Ah…this is what the speech therapist was explaining. She said they just peel and stick. Ok- I peeled the backing off, stuck it on his neck, put the little button in…and watched as he tried to talk and blew the whole contraption clear across the room! Seems there is a liquid adhesive that goes on first to help the stickey stuff stick!!! An ah-ha moment if ever I’ve had one.
Somewhere in the back of my brain I thought that once the radiation burns went away and the IV fluids stopped that all would be well. Ummm Hummmm……did I really believe THAT?!?!?!?!?!?
Fighting – and pleading, and begging, and crying – with the insurance company is becoming a way of life. If they aren’t denying a claim (it’s still a NO for the teeth replacements) they are only agreeing to cover partial payments on the medication. Their opinion was that George only needed to take a certain medication every other day. I won that argument – and boy, was I proud of myself. I did it all without one curse word … not a hell or a damn or anything else that was on the tip of my tongue!
Our 15 year-old grandson decided to try longboarding (a form of skateboard) down an ice-covered street, got caught up on a chunk of ice, fell, slid across about 30’ of roadway, ripped the skin off his arm and wrist and tore the ligaments in his knee. He and his friends were filming it … something only a bunch of 15 year-olds would do…and once he was released from the ER he had to email me the footage. I think I liked it more when I couldn’t see what they were doing!
My apologies to all that live in a cold climate but I have realized that I never, ever, want to live in Alaska, Maine or anywhere else that has true snowfall. Sitting around a warm, cozy fire while snow fell outside and blanketed the world in soft white down was always a fantasy of mine. Now that I have experienced 40+ inches of snow in less than 3 weeks I can honestly say the fantasy is over! I live near the ocean for pete’s sake – not North Dakota!!!! I’ve also noticed I am way toooo old to shovel snow!
Caregiving and snowstorms do not make for smooth sailing…unless, of course, one considers sliding across the bridge from one state to another to visit the surgeon sailing!
There we were, a man that can’t speak and sooo wants to, and a woman saying things that probably shouldn’t be said by anyone, sliding sideways over the bridge and through the snow; 4-wheel drive be damned, a death grip on the wheel, and a husband trying to mime how to handle the slide. Yep- I am not moving farther north…never……ever!!!!!
George is on the road to recovery. I think he is recovering faster physically than he is mentally. He is so very, very tired, still in a lot of pain and still learning how to adjust to all of this. Sometimes he wants to give up and then he has times where he can see better times ahead. The one-day-at-a-time approach is the only thing I know to help him through.
Thank you, all of my wonderful blog friends, for all your continued support for both of us. I have thought of all of you often and you are always in my prayers. I go about my day and think “Ah, I’ll have a chance to catch up tonight,” and then I get caught up in the minutiae of the day and before I know it days and days have flown by.
Now, I am going to post this and go visit your bloggie homes and say HI!
Tuesday, February 2, 2010
Wandering off the healthcare path...
Normally I write about my experiences with caring for my husband and the things I am learning as we journey through this disease. Today I am wandering from that path to share a slice of my day with you.
I was welcomed to my bathroom this morning by a very cold, very wet, very soggy, rug. One of the nuts holding the tank to the toilet bowl had broken off from the bolt and the water from the tank had drained onto the floor. Off went the water, the rug went into the tub and I cleaned up the flood. Ok- I’ll just throw on some clothes, pop into the local hardware store for parts, fix the darn thing and go about the rest of my day. Easy, right?
Well, after 3 trips to the store (how was I to know that toilet bolts aren’t one size fits all) I have the correct size and can replace both bolts. I go to my shed, get all the tools I need and I’m ready to go. But, first, I have to get hubby ready for the day and all settled in. And I have to get my morning coffee that I haven’t gotten to yet!!!
Coffee pot (single cup) is on and I’m helping hubby with his suction machine. Hmmmmm- it’s not suctioning right… hmph-let’s see what’s wrong… machine pressure is ok, tubes are clear, wand is clean…what the heck? Ahhhh- the canister has a hairline crack and there’s no vacuum. Off with the bad one, on with the new and all is well. Back for the coffee……yeck- it’s lukewarm….better start a new cup. In the meantime, back to the bathroom.
Agggh- got one bolt off but the other is being stubborn. There’s always one, isn’t there?
Got to get my coffee. I pull the cup out and instead of nice, fresh great looking coffee I see what looks like swamp water. Duh- I forgot to put in the coffee. OK- let’s do this one more time…..water..check, coffee…CHECK….cup…check. While I’m in the kitchen I make a quick lunch for hubby…..yes, it’s now lunch time. I’ve been to the store 3 times, gotten hubby dressed, fixed the suction machine, am working on the toilet and still have NOT had my coffee!!!!!!!!!
Back out to the shed for better pliers and back to the bathroom. I…cannot…get…this…thing…off!!! I’m now on my back, on the floor, under the toilet tank…ewww… I really need to clean back here a little better…and beginning to sound like a sailor. No luck. The darn thing is not budging. I WANT MY COFFEE!
Before I get to the kitchen hubby is asking for some help. No problem….I need a break anyway.
An hour later he’s all taken care of, settled back in his chair and I’m on my way back to the kitchen to make another attempt at some caffeine!!!! I dump the cold stuff into the sink and start ANOTHER cup.
Now armed with a can of WD-40 I enter the bathroom to continue the war with the toilet tank bolt. One spray onto the bolt and…damn, the phone is ringing. “Hello....no, honey, I’m not busy…of course I’ll pick you up from school. I’m on my way.” Time-out to rescue a grandson who has missed the last bus from school.
Ninety minutes later I’m on my way back to continue the war with the bolt. The WD-40 should have really soaked in by now. Ooops- forgot to give hubby the afternoon medications, now I have to make a special mixture to tube feed them into him. That WD-40 will really be soaked in!
Pliers, screwdriver, drill driver, wrenches,WD-40, bolts, nuts, washers, towels and a bucket all give my bathroom the appearance of a hardware store. And I still cannot loosen this bolt. One more time and then that’s it….I give up! Wait...Wait...can it be...is it really...yes, yes, it’s moving!!!! The nut is moving…..HOORAY- it’s OFF!!!!!!
Whew…
Fifteen minutes later both new bolts and all the washers and nuts are in, tightened down and the toilet tank is filled with water. The toilet works, there’s no flood on the floor and now it’s time for dinner. I’m going into the kitchen to prepare dinner and Get My Coffee!!!
The day probably would have gone so much easier if I had just gotten my coffee FIRST!!!!
I was welcomed to my bathroom this morning by a very cold, very wet, very soggy, rug. One of the nuts holding the tank to the toilet bowl had broken off from the bolt and the water from the tank had drained onto the floor. Off went the water, the rug went into the tub and I cleaned up the flood. Ok- I’ll just throw on some clothes, pop into the local hardware store for parts, fix the darn thing and go about the rest of my day. Easy, right?
Well, after 3 trips to the store (how was I to know that toilet bolts aren’t one size fits all) I have the correct size and can replace both bolts. I go to my shed, get all the tools I need and I’m ready to go. But, first, I have to get hubby ready for the day and all settled in. And I have to get my morning coffee that I haven’t gotten to yet!!!
Coffee pot (single cup) is on and I’m helping hubby with his suction machine. Hmmmmm- it’s not suctioning right… hmph-let’s see what’s wrong… machine pressure is ok, tubes are clear, wand is clean…what the heck? Ahhhh- the canister has a hairline crack and there’s no vacuum. Off with the bad one, on with the new and all is well. Back for the coffee……yeck- it’s lukewarm….better start a new cup. In the meantime, back to the bathroom.
Agggh- got one bolt off but the other is being stubborn. There’s always one, isn’t there?
Got to get my coffee. I pull the cup out and instead of nice, fresh great looking coffee I see what looks like swamp water. Duh- I forgot to put in the coffee. OK- let’s do this one more time…..water..check, coffee…CHECK….cup…check. While I’m in the kitchen I make a quick lunch for hubby…..yes, it’s now lunch time. I’ve been to the store 3 times, gotten hubby dressed, fixed the suction machine, am working on the toilet and still have NOT had my coffee!!!!!!!!!
Back out to the shed for better pliers and back to the bathroom. I…cannot…get…this…thing…off!!! I’m now on my back, on the floor, under the toilet tank…ewww… I really need to clean back here a little better…and beginning to sound like a sailor. No luck. The darn thing is not budging. I WANT MY COFFEE!
Before I get to the kitchen hubby is asking for some help. No problem….I need a break anyway.
An hour later he’s all taken care of, settled back in his chair and I’m on my way back to the kitchen to make another attempt at some caffeine!!!! I dump the cold stuff into the sink and start ANOTHER cup.
Now armed with a can of WD-40 I enter the bathroom to continue the war with the toilet tank bolt. One spray onto the bolt and…damn, the phone is ringing. “Hello....no, honey, I’m not busy…of course I’ll pick you up from school. I’m on my way.” Time-out to rescue a grandson who has missed the last bus from school.
Ninety minutes later I’m on my way back to continue the war with the bolt. The WD-40 should have really soaked in by now. Ooops- forgot to give hubby the afternoon medications, now I have to make a special mixture to tube feed them into him. That WD-40 will really be soaked in!
Pliers, screwdriver, drill driver, wrenches,WD-40, bolts, nuts, washers, towels and a bucket all give my bathroom the appearance of a hardware store. And I still cannot loosen this bolt. One more time and then that’s it….I give up! Wait...Wait...can it be...is it really...yes, yes, it’s moving!!!! The nut is moving…..HOORAY- it’s OFF!!!!!!
Whew…
Fifteen minutes later both new bolts and all the washers and nuts are in, tightened down and the toilet tank is filled with water. The toilet works, there’s no flood on the floor and now it’s time for dinner. I’m going into the kitchen to prepare dinner and Get My Coffee!!!
The day probably would have gone so much easier if I had just gotten my coffee FIRST!!!!
Tuesday, January 19, 2010
Radiation is OVER!!!!!
For the first time in what seems like forever I do not have to get up in the wee hours and drive into the city. I am not going to know what to do with myself!
I hope this gives some type of closure to my hubby. I'm extremely happy that this part of our journey is complete. George doesn't seem to feel the same way- in fact - he seems rather removed from it. I imagine this is something that must sink in, something he must mentally kick around for awhile.
The doctor has also ordered some medication for his anger and depression- thank goodness - so that may have something to do with it.
Now, hopefully, George can get on with the job of recovering and will have a more positive outlook for the future.
It's been such a long, hard, road but we're both still standing. Recuperation and recovery still stretch out before us, but for today, we're breathing a sigh of relief and being thankful that we've made it this far.
For the first time in what seems like forever I do not have to get up in the wee hours and drive into the city. I am not going to know what to do with myself!
I hope this gives some type of closure to my hubby. I'm extremely happy that this part of our journey is complete. George doesn't seem to feel the same way- in fact - he seems rather removed from it. I imagine this is something that must sink in, something he must mentally kick around for awhile.
The doctor has also ordered some medication for his anger and depression- thank goodness - so that may have something to do with it.
Now, hopefully, George can get on with the job of recovering and will have a more positive outlook for the future.
It's been such a long, hard, road but we're both still standing. Recuperation and recovery still stretch out before us, but for today, we're breathing a sigh of relief and being thankful that we've made it this far.
Friday, January 15, 2010
He shuffle steps up the hall banging on walls with his hand and on the floor with his cane. Newspapers soar into the air, diving under the table as if looking for a place to hide. Innocent objects are hurled to their death as Hurricane George roars through the dining room. My husband is having a melt down. A Three-Mile Island, 10 alarm, all-hands-on-deck, meltdown.
Bang! Bang! Bang! The cane hits the floor over and over, harder and harder. To that sound is added the stamping of feet, the crash of glass and the crraack of a wall giving way.
As weak as he is he still has enough force to put his fist into the wall. The resulting crack and hole reveal more about his state of mind than words would ever divulge.
His energy spent, he stands amid broken glassware, shattered dishes, and pieces of wallboard. He is at once horrified and embarrassed. Salt, pepper and sugar add to the crunching under his feet as he makes his way to the living room.
Once on the sofa he collapses into sobs. His shoulders heave as tears roll down his cheeks but he makes no sound. My heart is breaking for him. He keeps mouthing “Why? Why?” over and over. I can’t hug him--his neck and shoulders are too burnt and sore to touch. I have no words to say that will soothe him. His anger and humiliation are too great for tender words or touches. He is not yet ready to allow me into his hurt. I can see he needs to feel this, needs to go through it and come out on the other side and he needs to do it on his own.
This is another kind of waiting I do. One that is so much harder than just sitting in a chair. This is the wait that says “It’s ok – I understand, I’m here.” It’s a wait that doesn’t judge or condemn. This wait says “I’ll be here when you’re through. I’ll be right here when you’re ready to reach out.”
He says he wants to die. He doesn’t want to be a burden on me. His new term is “Living Hell.” He lives there, with no relief, day after day after day. He wants it to end.
At this point I don’t know what to tell him. I can only imagine how he feels and why he feels that way and I don’t know how I feel about that. The things they haven’t told us still trump the few things they did deliver,
Nobody –and I mean No One – said anything about human hurricanes in my home…..I would’ve gone out and purchased storm damage insurance or at least had a storm party so there would be folks around to witness the phenom.
This is another one of those things I know will pass with time and will just become part of the blur that is recovery but…Whew……I didn’t know I was going to need armor!
Bang! Bang! Bang! The cane hits the floor over and over, harder and harder. To that sound is added the stamping of feet, the crash of glass and the crraack of a wall giving way.
As weak as he is he still has enough force to put his fist into the wall. The resulting crack and hole reveal more about his state of mind than words would ever divulge.
His energy spent, he stands amid broken glassware, shattered dishes, and pieces of wallboard. He is at once horrified and embarrassed. Salt, pepper and sugar add to the crunching under his feet as he makes his way to the living room.
Once on the sofa he collapses into sobs. His shoulders heave as tears roll down his cheeks but he makes no sound. My heart is breaking for him. He keeps mouthing “Why? Why?” over and over. I can’t hug him--his neck and shoulders are too burnt and sore to touch. I have no words to say that will soothe him. His anger and humiliation are too great for tender words or touches. He is not yet ready to allow me into his hurt. I can see he needs to feel this, needs to go through it and come out on the other side and he needs to do it on his own.
This is another kind of waiting I do. One that is so much harder than just sitting in a chair. This is the wait that says “It’s ok – I understand, I’m here.” It’s a wait that doesn’t judge or condemn. This wait says “I’ll be here when you’re through. I’ll be right here when you’re ready to reach out.”
He says he wants to die. He doesn’t want to be a burden on me. His new term is “Living Hell.” He lives there, with no relief, day after day after day. He wants it to end.
At this point I don’t know what to tell him. I can only imagine how he feels and why he feels that way and I don’t know how I feel about that. The things they haven’t told us still trump the few things they did deliver,
Nobody –and I mean No One – said anything about human hurricanes in my home…..I would’ve gone out and purchased storm damage insurance or at least had a storm party so there would be folks around to witness the phenom.
This is another one of those things I know will pass with time and will just become part of the blur that is recovery but…Whew……I didn’t know I was going to need armor!
Thursday, January 7, 2010
Here’s a bit of the healthcare system at its best!
George had to have all of his teeth surgically removed the day before the laryengectomy due to a jaw infection. Without this surgery the laryngectomy could not be performed and George’s life could not have been saved.
We have now been informed that the insurance company will not pay for the dental surgery. They do not cover dental procedures as they are considered cosmetic in nature.
I spent most of the day on the phone explaining to various customer service representatives, supervisors and a clinical care insurance supervisor (whatever that is) that his dental surgery was a medical necessity not a cosmetic desire.
Not only do they not want to cover the surgery but they will not pay for any kind of dentures, implants, etc. The one customer service rep told me the insurance company does not consider teeth to be a necessity! So -- here I am, on the phone, jaw now on the floor, trying to speak in complete sentences and wanting to put my hand through the phone and shake the life out of this woman; all the time trying to digest the reality that teeth are now a cosmetic frivolity not a quality of life necessity or a physical need.
This young woman then proceeds to tell me that among the things they will cover is the prescription medication Viagra. That “it is a medical necessity because it provides a fuller quality of life to the patient taking it.” SHE ACTUALLY SAID THIS TO ME!!!!
I guess God just gave us teeth so we can look pretty when we smile!
I’ve spent most of the afternoon shaking my head. It’s starting to be funny – in a sad sort of way – but this makes no sense. Somewhere, in some office, far, far away from the reality of life, sits an insurance executive with a mouth full of teeth and no love life! :-)
I finally spoke to the surgeon’s office and they are going to assist me in appealing the decision. Keep your fingers crossed….
George had to have all of his teeth surgically removed the day before the laryengectomy due to a jaw infection. Without this surgery the laryngectomy could not be performed and George’s life could not have been saved.
We have now been informed that the insurance company will not pay for the dental surgery. They do not cover dental procedures as they are considered cosmetic in nature.
I spent most of the day on the phone explaining to various customer service representatives, supervisors and a clinical care insurance supervisor (whatever that is) that his dental surgery was a medical necessity not a cosmetic desire.
Not only do they not want to cover the surgery but they will not pay for any kind of dentures, implants, etc. The one customer service rep told me the insurance company does not consider teeth to be a necessity! So -- here I am, on the phone, jaw now on the floor, trying to speak in complete sentences and wanting to put my hand through the phone and shake the life out of this woman; all the time trying to digest the reality that teeth are now a cosmetic frivolity not a quality of life necessity or a physical need.
This young woman then proceeds to tell me that among the things they will cover is the prescription medication Viagra. That “it is a medical necessity because it provides a fuller quality of life to the patient taking it.” SHE ACTUALLY SAID THIS TO ME!!!!
I guess God just gave us teeth so we can look pretty when we smile!
I’ve spent most of the afternoon shaking my head. It’s starting to be funny – in a sad sort of way – but this makes no sense. Somewhere, in some office, far, far away from the reality of life, sits an insurance executive with a mouth full of teeth and no love life! :-)
I finally spoke to the surgeon’s office and they are going to assist me in appealing the decision. Keep your fingers crossed….
Wednesday, January 6, 2010
Monday, January 4, 2010
I’ve been trying to blog but have been unable to write about anything without sounding whiney; and that just seemed “unholiday.” The holidays were nice and I am extremely grateful that my beloved was here to participate in those special days. It felt almost…well…normal.
I keep deluding myself into thinking things are becoming normal. Then suddenly, without warning, the new normality sinks in. A recent visit to the oral surgeon was one of these times.
A small bone spur had to be removed from George’s gum. The surgeon came in, looked in George’s mouth, grabbed a pair of dental pliers and started to remove the piece. No warning, no medication, nothing. From my chair across the room I watched in horror as my husband’s hands curled around the arms of the chair and his legs and body stiffened. I realized “Oh my God, he can’t even say “Ow” or “that hurts,” or even “Stop!” I bolted out of my chair yelling, “hey-you’re hurting him." I felt so helpless. I looked into George’s big, blue eyes and could see his pain and fear. If I felt helpless I could only imagine how powerless he felt. I’m afraid I wasn’t very polite with that young surgeon but I’m sure he will never again assume his patient can communicate.
I should relate that the chemotherapy treatments have been completed and George has had no hair loss, no nausea/vomiting or any of the other interesting side effects chemo is known to bring. Radiation will be finished on the 18th of this month. He is getting fluids daily and is weak, frustrated, and very, very short-tempered.
The radiation oncologist wanted to keep him overnight at the hospital a couple of weeks back because his vitals were so low. George’s answer to that idea was “No Way in Hell! You can either remove these lines and let me out of here now or I take them out and leave, but either way I’M LEAVING!”
You guessed it – they let him go home! Now they ask me what his “temperature” is when he comes in in the morning!
Let’s hope his “temperature" stays “normal” until the treatments have all been completed.
I keep deluding myself into thinking things are becoming normal. Then suddenly, without warning, the new normality sinks in. A recent visit to the oral surgeon was one of these times.
A small bone spur had to be removed from George’s gum. The surgeon came in, looked in George’s mouth, grabbed a pair of dental pliers and started to remove the piece. No warning, no medication, nothing. From my chair across the room I watched in horror as my husband’s hands curled around the arms of the chair and his legs and body stiffened. I realized “Oh my God, he can’t even say “Ow” or “that hurts,” or even “Stop!” I bolted out of my chair yelling, “hey-you’re hurting him." I felt so helpless. I looked into George’s big, blue eyes and could see his pain and fear. If I felt helpless I could only imagine how powerless he felt. I’m afraid I wasn’t very polite with that young surgeon but I’m sure he will never again assume his patient can communicate.
I should relate that the chemotherapy treatments have been completed and George has had no hair loss, no nausea/vomiting or any of the other interesting side effects chemo is known to bring. Radiation will be finished on the 18th of this month. He is getting fluids daily and is weak, frustrated, and very, very short-tempered.
The radiation oncologist wanted to keep him overnight at the hospital a couple of weeks back because his vitals were so low. George’s answer to that idea was “No Way in Hell! You can either remove these lines and let me out of here now or I take them out and leave, but either way I’M LEAVING!”
You guessed it – they let him go home! Now they ask me what his “temperature” is when he comes in in the morning!
Let’s hope his “temperature" stays “normal” until the treatments have all been completed.
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