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.
Sunday, July 19, 2009
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
The Wall
I'm not sure what happens to marathon runners when they hit the wall within miles of the finish line. But I do know what has happened to Ken.
We're in the dog days of detox. Rather he's in the dog days and the rest of us are watching and at moments cheering him on and then wondering if he should just abandon the race because it appears too overwhelming.
I've reported that he's not under the table sucking his thumb, until now. He's managed to get himself off all oxycotin, something that reverberates with many because of Michael Jackson's sudden death and all that swirls around that.
But these last days have left him without pain killers and raging pain. At one point his sister called me at work to say he was incoherent he was in such pain. I came home, called his pain doctor and the neurosurgeon and asked for help. His pain doctor, who I now want to give our time share in Sedona I'm so grateful, called right back. She reminded us why Ken was doing this. Told him not to abandon this because he'd come so far and then called the neurosurgeon to see if we could work out some compromise about no pain pop during these last two weeks before surgery. Within a few minutes she'd called us back. The two doctors had talked and come up with a plan. The surgeon would move up the date to insert his pain pump and rather than fill it with opiates would fill it with a kind of numb ing agent that would help him through the critical two weeks of detox when he can have no opiates in order to reset his pain receptors. They also put him on a high powered anti-inflammatory until his surgery, now scheduled for July 13. He had acupuncture today and last night we took his sister out to dinner on her last night here before she returns to Indiana. (We figured last night that the two of them hadn't spent this much time together since they were kids and were at Lightening Dude Ranch in northern Indiana. Ken didn't enjoy Lightening Dude Ranch either.)
He is no longer under the table, but he is stepping slowly and counting time by the moment and not by the hour.
Lucas comes tomorrow.
We have four more days to go until the pump insertion and then another time period until he gets the pump filled with morphine and then more time until we get the right mix of meds in the pump.
But until then he's substituting DumDum suckers for pain pops and trying not to notice the difference.
We're in the dog days of detox. Rather he's in the dog days and the rest of us are watching and at moments cheering him on and then wondering if he should just abandon the race because it appears too overwhelming.
I've reported that he's not under the table sucking his thumb, until now. He's managed to get himself off all oxycotin, something that reverberates with many because of Michael Jackson's sudden death and all that swirls around that.
But these last days have left him without pain killers and raging pain. At one point his sister called me at work to say he was incoherent he was in such pain. I came home, called his pain doctor and the neurosurgeon and asked for help. His pain doctor, who I now want to give our time share in Sedona I'm so grateful, called right back. She reminded us why Ken was doing this. Told him not to abandon this because he'd come so far and then called the neurosurgeon to see if we could work out some compromise about no pain pop during these last two weeks before surgery. Within a few minutes she'd called us back. The two doctors had talked and come up with a plan. The surgeon would move up the date to insert his pain pump and rather than fill it with opiates would fill it with a kind of numb ing agent that would help him through the critical two weeks of detox when he can have no opiates in order to reset his pain receptors. They also put him on a high powered anti-inflammatory until his surgery, now scheduled for July 13. He had acupuncture today and last night we took his sister out to dinner on her last night here before she returns to Indiana. (We figured last night that the two of them hadn't spent this much time together since they were kids and were at Lightening Dude Ranch in northern Indiana. Ken didn't enjoy Lightening Dude Ranch either.)
He is no longer under the table, but he is stepping slowly and counting time by the moment and not by the hour.
Lucas comes tomorrow.
We have four more days to go until the pump insertion and then another time period until he gets the pump filled with morphine and then more time until we get the right mix of meds in the pump.
But until then he's substituting DumDum suckers for pain pops and trying not to notice the difference.
Saturday, July 4, 2009
Detox, the Final Days
Tuesday, June 30, we went to Dr. Leiberman's office and learned the good news: surgery July 17. Now we're in the dog days of detox that coincide with summer here in the desert: endlessly hot with no relief in sight. Mornings are as relentlessly oppressive as night time. It's what they mean by heat island. We've too many asphalt-covered, heat-soaking, radiating roads and parking lots here in the desert. It must be like pain with no hope of a reprieve from cooler mornings and nights that provide a respite from what otherwise seems like living in a blast furnace or in front of a hair dryer on permanent high heat. (I am eliminating a/c in this metaphor b/c it doesn't suit my purposes.) So it is with Ken. I had wondered at the seeming ease with which he handled the earlier weaning from oxycotin. He's not under the table sucking his thumb but his pain is clearly evident , especially in the early morning and evening when stinging pain courses through his legs and feet. It's reminiscent, he says, of those post-surgery days 11 years ago when all his nerves awoke from the surgery and remained on red alert until we found Dr. Sparks and some relief from the daily doses of oxycotin. Now he's here with his eyes fixed on the morphine pump insertion and the final days of life without relief except for planting flowers, Google Earth, cookies, gelatto , his Kindle and prayers.
Independence Day
I'm measuring Independence Day this year by geography. Amanda and Michael are in North Dakota at his 20th high school reunion where the honored graduates of this tiny school are in the 4th of July parade. Melissa and Lucas are in Oak Park. Karen, Ken's sister is here helping us through the last days of detox (another blog post) and her husband, Gary, is in Greentown maybe headed to Walton, In., with their son, Matt and his wife Jodie, for a family picnic, car show and fireworks. Their daughter, Alicia, and her family are in Florida at the Buckley's condo. And we are here in search of fireworks that may be best watched on TV and a good grilled hamburger which is easily enough obtained.
My mother for the first time in her life is not celebrating the 4th from her home in Kokomo where she was one of the first people to put red, white and blue bunting on her picture-perfect flower boxes. The flower boxes now have fake springeri we purchased from Holly Hobby nearly two years ago. Ken's mother doesn't know it's July 4th and she will be asleep before the fireworks begins right across the street from the nursing home at the Greentown fairgrounds.
This is an accounting of our whereabouts. As for our activities: Ken and Karen are potting flowers and replacing a hose. He has his perfect helpmate, his sister, who's patient, unendingly helpful and dedicated to helping her brother through this painful piece of pain. We will go across to the street to our church where there will be games, food, music and a salute to the 4th in the coolness of Nelson Hall. Tonight, the three of us will maybe treat ourselves to gelatto and Oh, Hell and our shared memories of earlier July 4ths in Kokomo, Indiana.
My mother for the first time in her life is not celebrating the 4th from her home in Kokomo where she was one of the first people to put red, white and blue bunting on her picture-perfect flower boxes. The flower boxes now have fake springeri we purchased from Holly Hobby nearly two years ago. Ken's mother doesn't know it's July 4th and she will be asleep before the fireworks begins right across the street from the nursing home at the Greentown fairgrounds.
This is an accounting of our whereabouts. As for our activities: Ken and Karen are potting flowers and replacing a hose. He has his perfect helpmate, his sister, who's patient, unendingly helpful and dedicated to helping her brother through this painful piece of pain. We will go across to the street to our church where there will be games, food, music and a salute to the 4th in the coolness of Nelson Hall. Tonight, the three of us will maybe treat ourselves to gelatto and Oh, Hell and our shared memories of earlier July 4ths in Kokomo, Indiana.
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