There are bright notes in all of this.
Their name is Danuta.
(And I might add, Karen. Ken's sister came for 10 days and was at her brother's beck and call, carrying ice tea with the 2 packets of green sweetener and the 1 of sugar, chauffering him to doctor appointments, grocery stores, the gym, the floral shop and the dry cleaners and all places in between. She cooed over him, listened to me and kept our home and hearth clean, stocked and orderly. We wept when she left.)
Danuta, our Polish friend who brought cabbage rolls last week, homemade apple cake and pickel soup yesterday, arrives at our doorstep most mornings and stays until just before I get home from work at night.
She's all things wonderful. First of all she's been cleaning our home for nearly two decades. She knows our quirks and where the garbage bags are kept. She changes the sheets, vaccums, wipes those water spots off bathroom mirrors and scrubs the shower weekly. Now she's moved on to more refined projects as she stays with Ken during the day when I am at the office.
She has reorganized the pantry, tossing what I couldn't bear to part with and rearranging the shelves in such a way that at the end of the day I find myself just going to the pantry to look at the sheer beauty of her organized Polish mind.
Same thing with the kitchen linen drawer. The assortment of towels that include Aunt Gladys' hand-embroidered kitchen towels are neatly folded by type: Aunt Gladys', the multi-colored tufted ones we bought at Costco a couple of years ago and the thin white cotton ones perfect for drying glasses. (Although you wouldn't know that by my spotty wine glasses.)
She, and others certainly, have been our comfort, especially these last two weeks.
When she couldn't come yesterday, she wound up stopping by with the Pickle Soup. (By the way, the recipe for Pickel Soup must be a national treasure. This soup is the nearest thing to homemade Chicken Noodle Soup only without the noodles and with just a hint of dill, thus the name. I'll get the recipe.)
Susan, she said, when she called me yesterday.
I brought you Pickel Soup. You have pickel soup?
No, Danuta.
I make this for Albert (her future son-in-law) and now it's his favorite. I brought you some and put it in the fridge for you.
(That meant she had driven over to our home from cleaning a home in Avondale 30-some miles away on a day she wasn't supposed to come when it was 113 to put a container of Pickel soup in our fridge for our dinner.)
I think Ken will like this? Is he ok?
He was asleep when I came in (she has a key).
Yes. He's ok, Danuta.
Will you be here tomorrow?
Yes. Susan. I will be here tomorrow. 9:30 ok?
Sure.
I get there earlier if I can.
Wednesday, July 29, 2009
Superior knowledge
It appears I'm amassing superior knowledge about pain. A very specific kind of pain. And this isn't personal knowledge. It's what I observe.
We're two weeks and two days post surgery and the patient seems in more pain than before. Which is saying something.
Since I traffic in shallow knowledge it wasn't until today that I goggled "clonidine neurological pain relief. " It reduced me to tears.
There's certainly a lot to be said for adding this to the cocktail of pain meds sloshing around in Ken's pain pump. The FDA-approved drug (but we all know about the FDA's track record) has shown dramatic results in relieving neuropathic pain where other meds have proven too weak for the task.
But he's experiencing the same kind of pain he experienced 11 years ago when the initial tumor and two cysts were removed from his spinal column and we began this journey of pain meds, surgeries, physical therapies, braces, chiropractors, massages, acupuncture and prayer.
He's unable to be on his feet longer than 2 minutes. When he stands his back feels like a block of wood. Numb. Hot. His feet are constantly burning, hurting. His legs wobbly. Stinging. And this is after our second increase of the pain mix trickling down his spine bathing it in what is supposed to be relief.
It takes time, we've been told. These are normal reactions, we've been told.
But week two in bed seems an odd normal. Although last night when Ken couldn't stand, the odd normal seemed preferable to the new new normal.
There's an odd desperation to going to the computer and googling meds and then weeping.
You don't want to have to google medical terms and meds except as a lifeline to someone playing a high stakes game of Who Wants to be a Millionaire. Not who just wants her husband to be able to sit and walk again.
We're two weeks and two days post surgery and the patient seems in more pain than before. Which is saying something.
Since I traffic in shallow knowledge it wasn't until today that I goggled "clonidine neurological pain relief. " It reduced me to tears.
There's certainly a lot to be said for adding this to the cocktail of pain meds sloshing around in Ken's pain pump. The FDA-approved drug (but we all know about the FDA's track record) has shown dramatic results in relieving neuropathic pain where other meds have proven too weak for the task.
But he's experiencing the same kind of pain he experienced 11 years ago when the initial tumor and two cysts were removed from his spinal column and we began this journey of pain meds, surgeries, physical therapies, braces, chiropractors, massages, acupuncture and prayer.
He's unable to be on his feet longer than 2 minutes. When he stands his back feels like a block of wood. Numb. Hot. His feet are constantly burning, hurting. His legs wobbly. Stinging. And this is after our second increase of the pain mix trickling down his spine bathing it in what is supposed to be relief.
It takes time, we've been told. These are normal reactions, we've been told.
But week two in bed seems an odd normal. Although last night when Ken couldn't stand, the odd normal seemed preferable to the new new normal.
There's an odd desperation to going to the computer and googling meds and then weeping.
You don't want to have to google medical terms and meds except as a lifeline to someone playing a high stakes game of Who Wants to be a Millionaire. Not who just wants her husband to be able to sit and walk again.
Sunday, July 26, 2009
Post Surgery II
We're two weeks post surgery and it feels like two years.
Thursday Dr. Lieberman programmed a five mililiter increase in the morphine that will drip from the pain pump to the tip of the line floating in Ken's spinal column and then down his spine. . It will take three days for him to notice the increase. That means tonight at some time he should experience more relief.
So far, I don't think he's noticed any change.
But this morning we made it to the 10:30 service at church and when Ken walked back from taking communion two ladies who adore him applauded.
He made it to church because two women from Kenya who attend our church were supposed to usher at the 9 a.m. service and he wanted to be there to tell them thank you.
They'd agreed to usher a month or two ago but had arrived late and the head usher had gone ahead and asked someone else to step in. It had infuriated Ken who had asked these dear African women who speak marginal English and read even less to usher. They had been thrilled and said that they would be happy to usher. Between them they had gotten six children dressed and out the door and wrapped themselves in their finest African garb to usher for Mr. Ken.
Mr. Ken and his wife hadn't made it to 9 a.m. church that Sunday to avert this mishap. So the ladies had sat in the pew, all dressed waiting to be told what to do. And no one ever approached them.
Ken was beside himself. So, he was insistent that we make it to church today because the ladies had agreed to try it again. They didn't even need to be coaxed and at 10:30 Saturday night Ken had text the minister to make sure everyone knew to look out for the African ladies.
And he had also wanted to be there this morning because a man who hadn't been to church for 12 years had agreed to usher at the 10:30 service and Ken wanted to support him.
Sherman came up after the service to thank Ken for inviting him to usher. Sherman said he would gladly do it again and Ken signed him up for the 16th and 23rd of August.
As for the African ladies, they came at 9 a.m., maybe still a little late, but it all went well.
Sometimes it's quite humbling to be married to Ken Felt.
Thursday Dr. Lieberman programmed a five mililiter increase in the morphine that will drip from the pain pump to the tip of the line floating in Ken's spinal column and then down his spine. . It will take three days for him to notice the increase. That means tonight at some time he should experience more relief.
So far, I don't think he's noticed any change.
But this morning we made it to the 10:30 service at church and when Ken walked back from taking communion two ladies who adore him applauded.
He made it to church because two women from Kenya who attend our church were supposed to usher at the 9 a.m. service and he wanted to be there to tell them thank you.
They'd agreed to usher a month or two ago but had arrived late and the head usher had gone ahead and asked someone else to step in. It had infuriated Ken who had asked these dear African women who speak marginal English and read even less to usher. They had been thrilled and said that they would be happy to usher. Between them they had gotten six children dressed and out the door and wrapped themselves in their finest African garb to usher for Mr. Ken.
Mr. Ken and his wife hadn't made it to 9 a.m. church that Sunday to avert this mishap. So the ladies had sat in the pew, all dressed waiting to be told what to do. And no one ever approached them.
Ken was beside himself. So, he was insistent that we make it to church today because the ladies had agreed to try it again. They didn't even need to be coaxed and at 10:30 Saturday night Ken had text the minister to make sure everyone knew to look out for the African ladies.
And he had also wanted to be there this morning because a man who hadn't been to church for 12 years had agreed to usher at the 10:30 service and Ken wanted to support him.
Sherman came up after the service to thank Ken for inviting him to usher. Sherman said he would gladly do it again and Ken signed him up for the 16th and 23rd of August.
As for the African ladies, they came at 9 a.m., maybe still a little late, but it all went well.
Sometimes it's quite humbling to be married to Ken Felt.
Sunday, July 19, 2009
Post Surgery
Eleven years, six surgeries, countless drugs and physical therapy sessions later, Ken and I had a sustained 60 minute conversation yesterday.
It also had nothing to do with bowel movements, pain levels, stomach upset, drowsiness, balance issues or drugs.
It was Saturday morning. We were at the dining room table. He was talking about the book he was reading on his Kindle. I was listening, cautioning him about my capacity for too much detail about the virtual past decades that these travelers to a new planet could access. We covered multiple topics. Ken was engaged, animated.
There was no fog. No eyelids that begin to droop 15 minutes into a conversation that over the last 11 years I've never learned to ignore. They're always a trigger that I've lost him. I jar him into engagement by accusing him of falling asleep. He rejects that accusation, maintaining that he's awake and alert and that the eyelid thing is merely his inability to maintain the focused eye contact I seem to require. We argue about that a little. But the debate is senseless. The conversation ends or he patiently, determinedly hangs in there and I carry on a monologue, which apparently I don't mind doing.
But not Saturday morning. There was no spat. Only tears.
Do you realize what's happening?
Yes. I'm here, he said.
For a person who processes most things by wrapping words around it and plopping it on the table for my spouse to sample, droopy eyelids have been difficult.
The drug veil was insidious. Mostly, I've been amazed that Ken has handled chronic pain with the grace, good humor and patience that he has. But I've resented losing even a sliver of his presence.
He can not stand for more than 10 minutes. Walking more than from the dining room to the bedroom is labored but he's fully engaged.
And although we have learned not to expect complete recovery during any of these surgeries, procedures, medications and therapies, Saturday morning sitting at the dining room table talking aimlessly for more than 60 minutes with my husband with nary a droopy lid was sweet.
It also had nothing to do with bowel movements, pain levels, stomach upset, drowsiness, balance issues or drugs.
It was Saturday morning. We were at the dining room table. He was talking about the book he was reading on his Kindle. I was listening, cautioning him about my capacity for too much detail about the virtual past decades that these travelers to a new planet could access. We covered multiple topics. Ken was engaged, animated.
There was no fog. No eyelids that begin to droop 15 minutes into a conversation that over the last 11 years I've never learned to ignore. They're always a trigger that I've lost him. I jar him into engagement by accusing him of falling asleep. He rejects that accusation, maintaining that he's awake and alert and that the eyelid thing is merely his inability to maintain the focused eye contact I seem to require. We argue about that a little. But the debate is senseless. The conversation ends or he patiently, determinedly hangs in there and I carry on a monologue, which apparently I don't mind doing.
But not Saturday morning. There was no spat. Only tears.
Do you realize what's happening?
Yes. I'm here, he said.
For a person who processes most things by wrapping words around it and plopping it on the table for my spouse to sample, droopy eyelids have been difficult.
The drug veil was insidious. Mostly, I've been amazed that Ken has handled chronic pain with the grace, good humor and patience that he has. But I've resented losing even a sliver of his presence.
He can not stand for more than 10 minutes. Walking more than from the dining room to the bedroom is labored but he's fully engaged.
And although we have learned not to expect complete recovery during any of these surgeries, procedures, medications and therapies, Saturday morning sitting at the dining room table talking aimlessly for more than 60 minutes with my husband with nary a droopy lid was sweet.
Wednesday, July 15, 2009
Lucas
A mother is prone to lavish praise on her son and see him as a stout-hearted man capable of leaping tall buildings, doing whatever else it is Superman does and brokering peace in the Mideast.
But in my case these are not the love-blind blubberings of a devoted mother. I simply speak the truth.
Lucas stepped in the door Thursday night in the final hours of his father's two-month detox and for the first time in many days he enabled us to breathe.
We had been awaiting my pending lay-off (that didn't come last week, thankfully). There's always the concern about our mothers in Indiana care centers. We'd also had to replace a broken toilet, fight an infestation of ants in the kitchen and treat a urinary tract infection that threatened to postpone Ken's surgery.
I had long lost my sense of humor. Ken was trying to make it on two pain pops a day.
We sat down to dinner and Lucas took us from UTIs, lay-offs, pain pops and toilets to a story of Salty, a 77-year-old man who several years ago started chaplaincies at horse tracks. A former drug abusing jockey, Salty had found God, or vice versa , and spent the rest of his life talking to others about his faith, the Bible and Christ. Lucas had talked to Salty (a whole other story), told him about his dad and informed us that we would be talking to Salty over the weekend if we wanted to so he could pray with Ken and me before the surgery.
Ok, then. This was good. This was going to be good.
It continued. He cooked us lunches (Baja burger he named it: grilled hamburger, his special guacamole (recipe upon request), swiss cheese, sauted mushrooms on grilled whole wheat bread). The night before he made us the aforementioned guacamole with this incredible grilled Tiger shrimp and this smokey, picquant sauce I dream about. (recipe upon request but he makes it pretty much by taste.) Grilled marinated flank steak, steamed fresh green beans in a lemon-butter sauce and fresh sweet corn (not as good as corn sold road side at Powers Lake in Wisconsin.)
Our son is compassionate, drop dead funny (he does a Saturday Night Live-worthy assortment of characters from a Pakastani taxi driver, to a Puerto Rican flaming hair dresser to this hard-to-place slightly retarded orderly fellow) wise, smart and capable of making folding laundry an adventure.
Everyone who knows him, and certainly his family knows this about him, understands Lucas' presence lights up a room. Allows everyone to breathe deeper. (In the hospital waiting room, he sat next to this 60-plus, overweight man who within minutes was telling Lucas' about his wife who had recurring cancer and the day before had told her husband she was ready to die. The man choked up. Lucas patted him on the back and said, " That's hard man. My prayers are with you and your wife." Simple. Straightforward. Sincere. I watched exchanges like this all weekend with me, his father, strangers. (And this was at a time when Lucas was told his job would end July 31 , another casualty of a company buy-out.)
Marriage to Melissa and the growth, adjustments, self-reflection and perspective-changing insights that union can inspire have polished his soul.
We told him he had made all the difference. We didn't know what we would have done without him.
I've heard those words spoken by me and to me many times.
They have never been truer than spoken yesterday when we bid him farewell and thanked him from the bottom of our now very full hearts.
But in my case these are not the love-blind blubberings of a devoted mother. I simply speak the truth.
Lucas stepped in the door Thursday night in the final hours of his father's two-month detox and for the first time in many days he enabled us to breathe.
We had been awaiting my pending lay-off (that didn't come last week, thankfully). There's always the concern about our mothers in Indiana care centers. We'd also had to replace a broken toilet, fight an infestation of ants in the kitchen and treat a urinary tract infection that threatened to postpone Ken's surgery.
I had long lost my sense of humor. Ken was trying to make it on two pain pops a day.
We sat down to dinner and Lucas took us from UTIs, lay-offs, pain pops and toilets to a story of Salty, a 77-year-old man who several years ago started chaplaincies at horse tracks. A former drug abusing jockey, Salty had found God, or vice versa , and spent the rest of his life talking to others about his faith, the Bible and Christ. Lucas had talked to Salty (a whole other story), told him about his dad and informed us that we would be talking to Salty over the weekend if we wanted to so he could pray with Ken and me before the surgery.
Ok, then. This was good. This was going to be good.
It continued. He cooked us lunches (Baja burger he named it: grilled hamburger, his special guacamole (recipe upon request), swiss cheese, sauted mushrooms on grilled whole wheat bread). The night before he made us the aforementioned guacamole with this incredible grilled Tiger shrimp and this smokey, picquant sauce I dream about. (recipe upon request but he makes it pretty much by taste.) Grilled marinated flank steak, steamed fresh green beans in a lemon-butter sauce and fresh sweet corn (not as good as corn sold road side at Powers Lake in Wisconsin.)
Our son is compassionate, drop dead funny (he does a Saturday Night Live-worthy assortment of characters from a Pakastani taxi driver, to a Puerto Rican flaming hair dresser to this hard-to-place slightly retarded orderly fellow) wise, smart and capable of making folding laundry an adventure.
Everyone who knows him, and certainly his family knows this about him, understands Lucas' presence lights up a room. Allows everyone to breathe deeper. (In the hospital waiting room, he sat next to this 60-plus, overweight man who within minutes was telling Lucas' about his wife who had recurring cancer and the day before had told her husband she was ready to die. The man choked up. Lucas patted him on the back and said, " That's hard man. My prayers are with you and your wife." Simple. Straightforward. Sincere. I watched exchanges like this all weekend with me, his father, strangers. (And this was at a time when Lucas was told his job would end July 31 , another casualty of a company buy-out.)
Marriage to Melissa and the growth, adjustments, self-reflection and perspective-changing insights that union can inspire have polished his soul.
We told him he had made all the difference. We didn't know what we would have done without him.
I've heard those words spoken by me and to me many times.
They have never been truer than spoken yesterday when we bid him farewell and thanked him from the bottom of our now very full hearts.
Pump in
At 11:35 a.m. Mon., July 13, they wheeled Ken into OR. He was in as much pain as I've seen him. The anestheologist , a competent-looking Dr. Andrews, broke protocol and administered a sedative before he was done reading all the paperwork. "I can't stand here and read this and watch you suffer,'' he said. That's when I realized that my earlier admonition to Ken to quit moaning so loudly because it was scaring other pre-op patients had been really misguided. (It wouldn't be the first or last time I had that realization.)
By 1 p.m., Dr. Lieberman walked into the waiting room with a wide smile and a hug and said that the operation to insert the pain pump had gone beautifully. He'd filled it with a cocktail of numbing agent and a pain killer and a teeny tiny bit of morphine. And from here on out we'll go to Dr. Lieberman's office and slowly begin adjusting the mix until he's without pain. The surgery was a success and the real pain management begins.
By 3:30 p.m. he was in his room in ICU. He ordered dinner (tomato soup, chicken caesar, pudding and ice cream) . He hugged Lucas and told him he was the best son ever. Talked to Amanda on the telephone and told her she was the best daughter ever. He beamed a squint-eyed love missile to me. He was oozing love and good will. That would end.
The good surgery juice that had led him to slumber through the pump insertion wore off quickly. He told us the next morning that he was up all night. The weary edge was back in his voice. He'd finally gone to sleep in a chair. But less than 24 hours after surgery he had had physical therapy. He had walked. He had blown into that plastic contraption with the ball that you have to keep suspended in a chamber. He had managed to break his Kindle (again) and he was on a first-name basis with the morning nurse, Dee.
We took him home at noon and put him to bed, where he is now slumbering. He has some pain but nothing like he did Monday at 11:35.
Pain management now begins not with piles of pills plopped in his mouth four times a day (although he still takes a lot of pills orally) but with a willowy catheter that floats in his spinal column slowly emitting teeny teeny tiny micro-size drops of morphine into his spine, 1000th the amount he's been taking. The prayer is that does the trick.
By 1 p.m., Dr. Lieberman walked into the waiting room with a wide smile and a hug and said that the operation to insert the pain pump had gone beautifully. He'd filled it with a cocktail of numbing agent and a pain killer and a teeny tiny bit of morphine. And from here on out we'll go to Dr. Lieberman's office and slowly begin adjusting the mix until he's without pain. The surgery was a success and the real pain management begins.
By 3:30 p.m. he was in his room in ICU. He ordered dinner (tomato soup, chicken caesar, pudding and ice cream) . He hugged Lucas and told him he was the best son ever. Talked to Amanda on the telephone and told her she was the best daughter ever. He beamed a squint-eyed love missile to me. He was oozing love and good will. That would end.
The good surgery juice that had led him to slumber through the pump insertion wore off quickly. He told us the next morning that he was up all night. The weary edge was back in his voice. He'd finally gone to sleep in a chair. But less than 24 hours after surgery he had had physical therapy. He had walked. He had blown into that plastic contraption with the ball that you have to keep suspended in a chamber. He had managed to break his Kindle (again) and he was on a first-name basis with the morning nurse, Dee.
We took him home at noon and put him to bed, where he is now slumbering. He has some pain but nothing like he did Monday at 11:35.
Pain management now begins not with piles of pills plopped in his mouth four times a day (although he still takes a lot of pills orally) but with a willowy catheter that floats in his spinal column slowly emitting teeny teeny tiny micro-size drops of morphine into his spine, 1000th the amount he's been taking. The prayer is that does the trick.
Wednesday, July 8, 2009
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