Once he was transferred to a regular floor, it was hard for friends and family not to be hopeful. I had no trouble totally ignoring the concept of hope.
I was having no more luck being in the right place at the right time for medical consults here than I did in MICU. I was beginning to suspect the doctors had hidden a GPS device in my bag to ensure they get in and out before or after I arrived. It was starting to feel like a game. We had just enough rare encounters to prevent me from calling them.
And really, what was the point? You can only hear “We just don't know what we're dealing with...” so many times before you grow dead weary of the questions. I hate that it sounds like I'm criticizing the doctors. I'm not—my expectations aren't that high. And I feel they are truly as frustrated as I am.
This is why I don't watch medical shows on TV. Never have. I work in the medical field—if I want to watch science fiction I'll opt for Star Trek. It's more in the realm of reality. “HawthoRNe” Pa-lease!! An RN who's a bitch is not going to use her power for good because a. doctors and administration won't allow it, and b) doing good undermines being a bitch.
Mainly I don't watch the shows because a sugar coated dose of what I've been dealing with all day is depressing. I'll admit to watching “HOUSE”, tho, because I don't think of it as a medical show, it's more like a mystery, with a fascinating lead character that takes place in a sort of a hospital setting. (CLUE: Even if every nurse in the hospital were on strike, doctors would not engage in patient care like they do on that show.)
But I digress. There were blood tests almost daily. They identified the bacteria, applied the appropriate antibiotic, and scratched their heads when the infection did not respond accordingly. Therefore, it must be colonized somewhere. They asked repeatedly if Rich was hosting any foreign bodies. Few set up lines are more perfect and it felt cruel that I had to respond seriously. No matter how many times they asked, the answers were still the same. No, he did not have an artificial knee, or any artificial joint; no pins, no rods, no artificial heart valves, no metal of any kind. Nothing that this particularly “sticky” type of bacteria likes to latch on to and take up farming. They were leaning towards the bladder or heart valves. They did not think it could be the scrotum despite the fact that it was the size of a foot ball. (Seriously, when he showed his testicles to his brother, his brother nearly fainted.)
I went out on a limb and asked if it could be the liver where they had done the needle, clamping, chemo and killing of tissue? Mmmm Probably not. This isn't that type of bacteria they explain.
Right, it's the kind that colonizes on metal implants that don't exist in Rich's body. That was the last question I asked. It was far easier when they just said “we don't know”. At least then I didn't feel like I was getting jerked around. I was sure of only two things.
1. Rich was going to pull through this.
2. They were doing the best they could.
Okay, three things—I was exhausted.
On Aug 7th, after the third or fourth CAT scan (I was losing count), they decided something was going on in the liver so they inserted a drain tube, WITHOUT benefit of any medication other than a topical. I was not informed of their decision to do this procedure or I would have been all over an order for something to get him through the excruciating pain of it. Boy did that drain produce some nasty output. When they tested the drainage, they discovered that a second bacteria and two different fungi had shown up to the party. So now they had to change the antibiotic, and add an antifungal to the mix. At one point he was getting nine IV a day.
Between IV treatments, blood tests, and monitoring his vitals, he was lucky to get two hours of sleep at a stretch, and with the catheter gone, his own body was waking him up to pee every couple of hours.
He was still fairly “out of it”, but now it seemed less from the delirium of infection and more from sleep deprivation. Combined with malnutrition, and too many days in bed, it took two people to help him stand and pivot to a chair. With the edema finally gone, it was shocking to see how much his flesh had wasted. Rich had always been brawny, football tackle built. Now there were bones prominent that I had never seen or felt before. Every physical effort left him trembling with fatigue. Brief conversations weakened him.
I had NO appetite and usually didn't even try to eat. But I sat enough hours at his bedside that I soon felt I had found every pound he had lost. Talk about insult to injury. I was no longer doing my daily workout. Most of my waking activities involved driving and sitting beside him. I was burning so few calories that black coffee was fattening.
I wasn't sleeping any better than Rich was. Without my treadmill, yoga and weights, or a healthy diet, my hot flashes were out of control. Between the multiple episodes of unbearable hot flashes, and the fun house tour of nightmares, every night was just a string of half-ass naps.
In the interest of full disclosure, it's important to state that I did not spend every day, hours at a time at his bedside, mopping his fevered brow. I was there, available and responded to his needs, but for the most part he slept.
On three occasions I did not to go the hospital at all. The result of reaching a level of frustration that made me unfit for human consumption. Frustration with the situation—the confusion, the unknown, the fear. And sometimes with Rich. I'm human, and sometimes it was hard to watch him expend every ounce of energy he had for everyone in the room but me. I know that sounds selfish, but there were a couple of times when I wondered if even the Virgin Mary had occasion to roll her eyes and think “yeah, yeah, he's all that, but I'm the one who changed his nappies and wiped his nose...”
Gimme a break, I said I was sleep deprived.
Saturday, August 21, 2010
Friday, August 20, 2010
The good news: Rich will outlive me
All that talk about food just to provide necessary background for what comes next.
Suddenly, and I do mean without warning, I entered my magic hour in MICU to find that my world had shifted 17 degrees. Rich was sitting up, animated, totally engaged, disconnected from at least half of his tubing, and his monitor was humming along happily on all levels. I still, however, do not like roller coasters.
No one is telling me anything other than he's being transferred out of MICU, and while I'm quick enough to realize that the alternative transfer out is the morgue, my joy is tempered with the flood of questions a cognizant brain would need to process. Luckily, my needs have never been an issue here, so there will be no delay in processing Rich's transfer.
The ticket out of MICU is passing what's called a “cookie swallow” test. No cookies are involved. I was present, I assure you of the absence of anything resembling a cookie, even if you're British, because a saltine was the closest you could pretend to a cookie and even Brits don't consider saltines to be cookies. Trust me. There was a saltine, a mini portion of applesauce, and three cups of tap water with varying saturations of clearless, tasteless thickener.
Rich had to follow the commands of swallowing each of these items while the speech therapist held her fingertips under his chin at the base of his tongue, asked questions and watched for choking. I found it quite interesting. Rich thought he was having a feast. His first meal in six days—he was waxing poetic, had everyone laughing, and has absolutely no memory of any part of it.
Rich passed his cookie swallow test to everyone's amazement but mine and Rich's. Two things motivate Rich—a challenge and an audience. He had both. I have questioned him three times on this. He remembers nothing.
So now he could be moved to a Cardiac floor. (they still needed to monitor his A-fib and more on THAT later)
He was started on a mechanical soft diet, while continuing the NG tube feed. Sometimes it was mechanical soft, sometimes it wasn't. Most of it he couldn't eat, despite my prompting. Finally he said, “Taste it!!”
Oh my god. If you've spent 15 months trying to eat uber-healthy because you're dealing with cancer and then you find yourself eating hospital food!?! It tasted like warm, semi-chewed grainy mushiness with five times the amount of salt necessary to pickle meat. It is mid summer and their fruit offering is canned fruit cocktail that immediately transported me back to my 1960s grade school cafeteria. And skimmed milk. And coffee—on a cardiac floor with A-fib!?!?!?!
Three days into his stay on the cardiac floor and we were visited by the dietician. She dressed like a doctor so I assumed she was a) intelligent, or b) important. I am still unable to pick one.
She asks us about his appetite, his ability to eat, yada, yada, yada. She informs us that based on his lab work, Rich is “malnourished”. Her suggestion to us..... “Maybe your wife could bring some meals in for you from McDonalds.”.
Rich looked at me. I looked at Rich. 63 brain cells exploded in my head that I will never get back.
Neither one of us could speak. I was praying the dietician would not speak. Alas, she feels the need to elaborate. “Maybe you could smuggle something in...” I watch 126 brain cells fire from my third eye and smash into the wall above her head. I'm trying to remember that this is amusing, but right now it's just painful. I probably don't need to recap here, but please humor me.
We are at the mercy of a medical center rated one of the top fifty in the nation, and their top level dietician recommends McDonalds to treat malnutrition. On top of that, you're telling me that YOU don't know how to deal with malnutrition within your institution so it is now my job to SMUGGLE? Gee-zus=H, I could write volumes on THAT. Kryste—what is contraband—FRESH FRUIT?
I said nothing. Mainly because I was trying so hard not to burst out laughing. Then she said she would order a dietary supplement for EVERY meal—tasteless, innocuous, and Rich can stir it into his meals. She asked if Rich was agreeable, and Rich was all over that. I thanked her profusely just to get her out of the room, and resisted the urge to remind her that at this point Rich was not able to open beverage containers, let alone open and mix your elixers into his inedible food.
Luckily it was a moot point. In the following three weeks in the hospital, with three meals a day, he received a total of three trays with a nutrient supplement cup. I, however, began cooking and shlepping two meals a day plus snacks. I left the dietary experts to handle breakfast because Rich really liked their scrambled eggs.
When it comes to shlepping food to a patient, it's not just the transport and presentation. I'm traveling 40 minutes in 90 degree weather. I've got a ten minute walk from car to bedside laden like a pack mule. I'm not running back and forth, so I load the mule once a day. That means the food, and all the necessary ice packs, not only for transport, but also for storage in the room. Don't send anything to the nutrition room fridge that you ever want to see again—putting your name on it is a waste of time and ink.
The doctors appear thrilled that I am bringing food into Rich, that he is not eating “hospital food”. I find this attitude disturbing. I'm wondering how this will impact our bill—not as a critical point, just a matter of idle curiosity.
So there's me “smuggling” food in one day from a gourmet restaurant to fulfill his request. When the nurse tech comes to collect his lunch tray, I explain we sent it away because I brought his lunch. She says, “How much did he eat?”
Me, who has lived in this world for too many days says.... “Eighty percent”.
She smiles and notes the 80% and I lose more brain cells because she doesn't even have the sense to ask 80% OF WHAT?!?! 80% of a pack of cheese crackers? 80% of a four course meal?
Rich had a full tummy of lovely food and he drifted off to sleep. I sat there and cried with the incredible frustration of another day in non-stop insanity. Seriously, there are days when stupidity makes you cry. On a pain scale of 1-10, it's an 8.
Before you think I'm just thin skinned, I need to mention the other straws that lay upon this camel's back.
Too many times I enter his room to find his urinal sitting on his bed tray, lid open, empty but NOT rinsed, smelling of urine. The first three days on this floor I asked about his hygiene and was assured it was being done. The third day I discovered that his foley tubing was fully caked to the opening of his penis, the skin of his groin was excoriated from the swelling of his testicles, as well as fecal matter.
I am NOT blaming staff. His nursing team is among the best you can imagine. But they are short staffed and spread WAY too thin. I have walked in their shoes and I know.
The day he had two units of blood transfused, the edema in his lower extremities and testicles traveled up into his abdomen. He was short of breath so I asked his nurse how much Lasix he was getting.
NONE.
Edema for over a week that made his skin shiny and looked ready to split open. Two units of blood, and now he's short of breath and I can see his abdomen is swollen. I asked someone to please call a doctor and ask for a Lasix order. Lasix was ordered that night.
Doctors couldn't determine where the infection was colonized--it was raging through his blood but they needed to find the source. Understandable to be sure. But based on everything they were testing and trying, there came a point when they were concerned the infection had colonized in the heart valves==typical for this kind of bacteria. A TEE was scheduled for Friday. A tube down the throat to view the valves. It requires NPO (nothing by mouth) after midnight the night before.
I came in Friday morning early to be with him before the procedure. Well Fuck Me, no one turned off the tube feed. By god he didn't get a breakfast tray, but they were pumping “nutrients” into his stomach all night long via his NG tube. The cardiologist scheduled to do the test was NOT a happy camper, and apologized to me for this error. My response was, “no problem, just do it tomorrow.”
You would have thought I had just demanded his left testicle on a platter. He looked me square in the eye and announced that “Tomorrow is Saturday.”
My innocent, trusting response to the obvious only confirmed for him my total stupidity. So he explains for my simple mind that it can wait until Monday.
REALLY? REALLY. All I've heard for days is that everything hinges on finding the source of this infection that is not responding to anything ya'll are doing, and then I hear that that means it's probably in the heart valves since you've ruled everything else out, so we have to do this TEE test to make sure the heart isn't being DAMAGED, and now it CAN WAIT UNTIL MONDAY?!?!?!?! THREE DAYS!! REALLY? REALLY....
NOTE TO self: the Hippocratic Oath is suspended on weekends and holidays.
All of this on the heels of no less than three Nurse Manager Case workers entering the room to ask me IN FRONT OF RICH, what my plans are for hospice and end of life care.
Gee=zus, H. Kryste. I am SO done with you people. I no longer have any hopes or expectations of you healing him., or even contributing to the process. I'm just praying you don't hurt him. And I'm wondering how I will find the strength to protect him from your care.
But the good news is that Rich will outlive me, because I'm feeling dangerously close to a cranial implosion.
Suddenly, and I do mean without warning, I entered my magic hour in MICU to find that my world had shifted 17 degrees. Rich was sitting up, animated, totally engaged, disconnected from at least half of his tubing, and his monitor was humming along happily on all levels. I still, however, do not like roller coasters.
No one is telling me anything other than he's being transferred out of MICU, and while I'm quick enough to realize that the alternative transfer out is the morgue, my joy is tempered with the flood of questions a cognizant brain would need to process. Luckily, my needs have never been an issue here, so there will be no delay in processing Rich's transfer.
The ticket out of MICU is passing what's called a “cookie swallow” test. No cookies are involved. I was present, I assure you of the absence of anything resembling a cookie, even if you're British, because a saltine was the closest you could pretend to a cookie and even Brits don't consider saltines to be cookies. Trust me. There was a saltine, a mini portion of applesauce, and three cups of tap water with varying saturations of clearless, tasteless thickener.
Rich had to follow the commands of swallowing each of these items while the speech therapist held her fingertips under his chin at the base of his tongue, asked questions and watched for choking. I found it quite interesting. Rich thought he was having a feast. His first meal in six days—he was waxing poetic, had everyone laughing, and has absolutely no memory of any part of it.
Rich passed his cookie swallow test to everyone's amazement but mine and Rich's. Two things motivate Rich—a challenge and an audience. He had both. I have questioned him three times on this. He remembers nothing.
So now he could be moved to a Cardiac floor. (they still needed to monitor his A-fib and more on THAT later)
He was started on a mechanical soft diet, while continuing the NG tube feed. Sometimes it was mechanical soft, sometimes it wasn't. Most of it he couldn't eat, despite my prompting. Finally he said, “Taste it!!”
Oh my god. If you've spent 15 months trying to eat uber-healthy because you're dealing with cancer and then you find yourself eating hospital food!?! It tasted like warm, semi-chewed grainy mushiness with five times the amount of salt necessary to pickle meat. It is mid summer and their fruit offering is canned fruit cocktail that immediately transported me back to my 1960s grade school cafeteria. And skimmed milk. And coffee—on a cardiac floor with A-fib!?!?!?!
Three days into his stay on the cardiac floor and we were visited by the dietician. She dressed like a doctor so I assumed she was a) intelligent, or b) important. I am still unable to pick one.
She asks us about his appetite, his ability to eat, yada, yada, yada. She informs us that based on his lab work, Rich is “malnourished”. Her suggestion to us..... “Maybe your wife could bring some meals in for you from McDonalds.”.
Rich looked at me. I looked at Rich. 63 brain cells exploded in my head that I will never get back.
Neither one of us could speak. I was praying the dietician would not speak. Alas, she feels the need to elaborate. “Maybe you could smuggle something in...” I watch 126 brain cells fire from my third eye and smash into the wall above her head. I'm trying to remember that this is amusing, but right now it's just painful. I probably don't need to recap here, but please humor me.
We are at the mercy of a medical center rated one of the top fifty in the nation, and their top level dietician recommends McDonalds to treat malnutrition. On top of that, you're telling me that YOU don't know how to deal with malnutrition within your institution so it is now my job to SMUGGLE? Gee-zus=H, I could write volumes on THAT. Kryste—what is contraband—FRESH FRUIT?
I said nothing. Mainly because I was trying so hard not to burst out laughing. Then she said she would order a dietary supplement for EVERY meal—tasteless, innocuous, and Rich can stir it into his meals. She asked if Rich was agreeable, and Rich was all over that. I thanked her profusely just to get her out of the room, and resisted the urge to remind her that at this point Rich was not able to open beverage containers, let alone open and mix your elixers into his inedible food.
Luckily it was a moot point. In the following three weeks in the hospital, with three meals a day, he received a total of three trays with a nutrient supplement cup. I, however, began cooking and shlepping two meals a day plus snacks. I left the dietary experts to handle breakfast because Rich really liked their scrambled eggs.
When it comes to shlepping food to a patient, it's not just the transport and presentation. I'm traveling 40 minutes in 90 degree weather. I've got a ten minute walk from car to bedside laden like a pack mule. I'm not running back and forth, so I load the mule once a day. That means the food, and all the necessary ice packs, not only for transport, but also for storage in the room. Don't send anything to the nutrition room fridge that you ever want to see again—putting your name on it is a waste of time and ink.
The doctors appear thrilled that I am bringing food into Rich, that he is not eating “hospital food”. I find this attitude disturbing. I'm wondering how this will impact our bill—not as a critical point, just a matter of idle curiosity.
So there's me “smuggling” food in one day from a gourmet restaurant to fulfill his request. When the nurse tech comes to collect his lunch tray, I explain we sent it away because I brought his lunch. She says, “How much did he eat?”
Me, who has lived in this world for too many days says.... “Eighty percent”.
She smiles and notes the 80% and I lose more brain cells because she doesn't even have the sense to ask 80% OF WHAT?!?! 80% of a pack of cheese crackers? 80% of a four course meal?
Rich had a full tummy of lovely food and he drifted off to sleep. I sat there and cried with the incredible frustration of another day in non-stop insanity. Seriously, there are days when stupidity makes you cry. On a pain scale of 1-10, it's an 8.
Before you think I'm just thin skinned, I need to mention the other straws that lay upon this camel's back.
Too many times I enter his room to find his urinal sitting on his bed tray, lid open, empty but NOT rinsed, smelling of urine. The first three days on this floor I asked about his hygiene and was assured it was being done. The third day I discovered that his foley tubing was fully caked to the opening of his penis, the skin of his groin was excoriated from the swelling of his testicles, as well as fecal matter.
I am NOT blaming staff. His nursing team is among the best you can imagine. But they are short staffed and spread WAY too thin. I have walked in their shoes and I know.
The day he had two units of blood transfused, the edema in his lower extremities and testicles traveled up into his abdomen. He was short of breath so I asked his nurse how much Lasix he was getting.
NONE.
Edema for over a week that made his skin shiny and looked ready to split open. Two units of blood, and now he's short of breath and I can see his abdomen is swollen. I asked someone to please call a doctor and ask for a Lasix order. Lasix was ordered that night.
Doctors couldn't determine where the infection was colonized--it was raging through his blood but they needed to find the source. Understandable to be sure. But based on everything they were testing and trying, there came a point when they were concerned the infection had colonized in the heart valves==typical for this kind of bacteria. A TEE was scheduled for Friday. A tube down the throat to view the valves. It requires NPO (nothing by mouth) after midnight the night before.
I came in Friday morning early to be with him before the procedure. Well Fuck Me, no one turned off the tube feed. By god he didn't get a breakfast tray, but they were pumping “nutrients” into his stomach all night long via his NG tube. The cardiologist scheduled to do the test was NOT a happy camper, and apologized to me for this error. My response was, “no problem, just do it tomorrow.”
You would have thought I had just demanded his left testicle on a platter. He looked me square in the eye and announced that “Tomorrow is Saturday.”
My innocent, trusting response to the obvious only confirmed for him my total stupidity. So he explains for my simple mind that it can wait until Monday.
REALLY? REALLY. All I've heard for days is that everything hinges on finding the source of this infection that is not responding to anything ya'll are doing, and then I hear that that means it's probably in the heart valves since you've ruled everything else out, so we have to do this TEE test to make sure the heart isn't being DAMAGED, and now it CAN WAIT UNTIL MONDAY?!?!?!?! THREE DAYS!! REALLY? REALLY....
NOTE TO self: the Hippocratic Oath is suspended on weekends and holidays.
All of this on the heels of no less than three Nurse Manager Case workers entering the room to ask me IN FRONT OF RICH, what my plans are for hospice and end of life care.
Gee=zus, H. Kryste. I am SO done with you people. I no longer have any hopes or expectations of you healing him., or even contributing to the process. I'm just praying you don't hurt him. And I'm wondering how I will find the strength to protect him from your care.
But the good news is that Rich will outlive me, because I'm feeling dangerously close to a cranial implosion.
Thursday, August 19, 2010
The Care and Feeding of Cancer
Feed a cold, starve a fever. Or is it the other way round? I can never keep that one straight. But I am learning the care and feeding of neuro-endocrine cancer. At the risk of stating the obvious, not all cancers are alike. You can do basic research, and there are some great sources of information available. But it's important to specialize when you get down to it—especially when the GI tract is involved. Between the oral chemo, and weeks of radiation that toasted his upper abdomen just short of crispy, food and nutrition became a bit of a challenge.
Most of the serious books on cancer nutrition warn against ANY sugar. Some are so anti salt that you're supposed to stop bathing in softened water. .Some are anti animal products, some are anti gluten. Some deny all nuts and most fruits. Some require mega doses of wheat grass four times a day. Some require certain foods in certain combinations at specific times of day for specific numbers of days. I skimmed several books before narrowing it down to the three books I studied, looking for a happy medium. There wasn't one. Each book promised the Way the Truth and the Light. There were minor differences, none of them palatable. The common denominator was that if I followed any one of these books to the letter, which is what each book required, I wouldn't have to worry about the cancer.
Rich would want to kill himself.
Two of the many things Rich and I have always enjoyed together is good food and cooking. We eat healthy without being psychotic about it. By that I mean that even when we were trying to lose a few pounds, there's no way we could ever “count points” or look for ways to “cheat our food”. I refuse to have an adversarial relationship with my food. If we want a piece of cake, it's going to be really good cake, not pretend cake. We just won't have it every day.
So the good news is we didn't need to make a bunch of changes. We were already eating mostly vegetables—fresh or steamed; using mainly herbs rather than sauces; desserts were maybe three times a year; red meat even less often; whole grains; reduced fats, reduced sugar. We were at this well before cancer entered our lives, from years earlier when we watched the movie “Super Size Me”.
What we discovered on this path was that a small portion of something truly lovely (and healthy) with excellent ingredients was far more satisfying than ANYTHING from a drive thru window—even super sized. The better you eat, the less you eat. It really is quality over quantity. Once you get the hang of it, it doesn't take any more work to eat healthy, and it's more environmentally friendly when you opt for fresh cooked over the extensive packaging of convenience foods.
Sermon not intended...my point being that no matter how well you're doing, cancer makes you desperate to do more. Even if you don't know what “more” is.
As I mentioned earlier, I started daily juicing. I stepped it up to organic whenever possible. Reducing chemicals and preservatives as much as possible. All animal products had to be hormone and antibiotic free. I'm thinking the last thing you want to introduce to your cancer cells is growth hormone. Call me crazy. And I'm anti antibiotic on principal—enough already with creating Super Germs, and since chemo is going to compromise his immune system, well, you get the idea.
I will tell you that the last topic you want to broach with doctors is... nutrition. It's like trying to teach a pig to sing. The pig's not interested and you'll just get frustrated. Don't believe me? Just ask any doctor, regarding any medical condition, what they recommend in the way of nutrition. At best you may hear them recommend a “low-cholesterol” diet. Ask them what that means or how to do it! Seriously. That's just good, clean fun.
I also started herbal supplements focusing on liver function, herbs for sugar metabolism since we're dealing with the pancreas, and your basic anti-oxidants. We started Protocel based on extensive research and high recommendations from close sources—people who successfully fought cancer. We started Willard's Water, also highly recommended by reliable sources. I was researching everything that came my way, and it was exhausting. I was determined not to be blinded by my desperation; equally determined to keep an open mind.
Lest I sound dumb and gullible, I need to note here that once the doctors finally got a handle on what, exactly, we were dealing with... they had no clue. Rich has a neuro-endocrine pancreatic cancer that is so rare that have been no studies on it. According to our radiologist, only 8,000 cases have been documented in the past fifty years. So I figure if they Practice Medicine, I can add milk thistle and mojo to the mix.
Because the bottom line here is that chemicals and herbs aren't going to save Rich, they're only going to assist him in saving himself. This fight will be won or lost in his heart and mind. So I do what I can do, and bring the best I can to the table.
Whatever you do, it needs be right for the person in the fight, not the author of a book, or family members who are NOT doctors but like to play one at family functions. It needs to be done in harmony and balance. You're not just starving the cancer and feeding the body. You're feeding the Body, Mind and Spirit. The most perfect cancer diet won't work if you can't persuade your patient to choke it down, or they're miserable if they do. Whatever you cook or conjure up, make it lovely enough to feed the Mind and bless the Spirit.
And every now and then, DON'T underestimate the power of a good Margarita!
Most of the serious books on cancer nutrition warn against ANY sugar. Some are so anti salt that you're supposed to stop bathing in softened water. .Some are anti animal products, some are anti gluten. Some deny all nuts and most fruits. Some require mega doses of wheat grass four times a day. Some require certain foods in certain combinations at specific times of day for specific numbers of days. I skimmed several books before narrowing it down to the three books I studied, looking for a happy medium. There wasn't one. Each book promised the Way the Truth and the Light. There were minor differences, none of them palatable. The common denominator was that if I followed any one of these books to the letter, which is what each book required, I wouldn't have to worry about the cancer.
Rich would want to kill himself.
Two of the many things Rich and I have always enjoyed together is good food and cooking. We eat healthy without being psychotic about it. By that I mean that even when we were trying to lose a few pounds, there's no way we could ever “count points” or look for ways to “cheat our food”. I refuse to have an adversarial relationship with my food. If we want a piece of cake, it's going to be really good cake, not pretend cake. We just won't have it every day.
So the good news is we didn't need to make a bunch of changes. We were already eating mostly vegetables—fresh or steamed; using mainly herbs rather than sauces; desserts were maybe three times a year; red meat even less often; whole grains; reduced fats, reduced sugar. We were at this well before cancer entered our lives, from years earlier when we watched the movie “Super Size Me”.
What we discovered on this path was that a small portion of something truly lovely (and healthy) with excellent ingredients was far more satisfying than ANYTHING from a drive thru window—even super sized. The better you eat, the less you eat. It really is quality over quantity. Once you get the hang of it, it doesn't take any more work to eat healthy, and it's more environmentally friendly when you opt for fresh cooked over the extensive packaging of convenience foods.
Sermon not intended...my point being that no matter how well you're doing, cancer makes you desperate to do more. Even if you don't know what “more” is.
As I mentioned earlier, I started daily juicing. I stepped it up to organic whenever possible. Reducing chemicals and preservatives as much as possible. All animal products had to be hormone and antibiotic free. I'm thinking the last thing you want to introduce to your cancer cells is growth hormone. Call me crazy. And I'm anti antibiotic on principal—enough already with creating Super Germs, and since chemo is going to compromise his immune system, well, you get the idea.
I will tell you that the last topic you want to broach with doctors is... nutrition. It's like trying to teach a pig to sing. The pig's not interested and you'll just get frustrated. Don't believe me? Just ask any doctor, regarding any medical condition, what they recommend in the way of nutrition. At best you may hear them recommend a “low-cholesterol” diet. Ask them what that means or how to do it! Seriously. That's just good, clean fun.
I also started herbal supplements focusing on liver function, herbs for sugar metabolism since we're dealing with the pancreas, and your basic anti-oxidants. We started Protocel based on extensive research and high recommendations from close sources—people who successfully fought cancer. We started Willard's Water, also highly recommended by reliable sources. I was researching everything that came my way, and it was exhausting. I was determined not to be blinded by my desperation; equally determined to keep an open mind.
Lest I sound dumb and gullible, I need to note here that once the doctors finally got a handle on what, exactly, we were dealing with... they had no clue. Rich has a neuro-endocrine pancreatic cancer that is so rare that have been no studies on it. According to our radiologist, only 8,000 cases have been documented in the past fifty years. So I figure if they Practice Medicine, I can add milk thistle and mojo to the mix.
Because the bottom line here is that chemicals and herbs aren't going to save Rich, they're only going to assist him in saving himself. This fight will be won or lost in his heart and mind. So I do what I can do, and bring the best I can to the table.
Whatever you do, it needs be right for the person in the fight, not the author of a book, or family members who are NOT doctors but like to play one at family functions. It needs to be done in harmony and balance. You're not just starving the cancer and feeding the body. You're feeding the Body, Mind and Spirit. The most perfect cancer diet won't work if you can't persuade your patient to choke it down, or they're miserable if they do. Whatever you cook or conjure up, make it lovely enough to feed the Mind and bless the Spirit.
And every now and then, DON'T underestimate the power of a good Margarita!
Wednesday, August 18, 2010
The Mystery of MICU
Visiting Rich in MICU is like visiting the Wizard of Oz. There is no less protocol. It is no less surreal.
You walk down hallways, through locked doors that open magically
As I'm ushering one family member through the gauntlet to Rich's bedside, she remarks on how different these rooms are from regular hospital rooms. The Large room with a full glass wall facing the nurses' desk and the HUGE doorways. I explain the necessity of monitoring and the large openings are so they can quickly get all the equipment and personnel in the room if the patient Codes. I hear her gasp and I quickly assure her.. “No, really, that's a good thing”.
I catch snippets of staff conversation and smile. This is, after all, their workday, this is normal for them. I take an odd comfort in knowing that this is normal for SOMEONE. I just wish they would talk a bit quieter so as not to distract the doctors with the charts making important decisions. My life hangs on such decisions.
The mystery of MICU is that given the time spans between brief visits, you never know what you will find.
One visit I found him upgraded to a nasal cannula for oxygen, vitals on the monitor nearly meeting goal, eyes open and bright, a smile for me. He was too tired to talk much, but he managed to assure me he would be okay. Six hours later and he was back on a re-breather mask, the monitor kept alarming and he did not respond to my touch, my voice or my tears. You learn to use the long walk in this gated community to breathe deeply and prepare yourself for whatever awaits you.
For the most part, the nurses avoid being in the room during visiting minutes. Maybe they're respecting your privacy, maybe they're afraid you'll ask questions. Let's face it, if your nursing choice is the high stress of MICU, conversation is not a priority for you.
He was always freshly bathed before the visiting hour. I used to bathe patients and I could tell. Everything fresh, bedding neatly arranged and the barest waft of baby powder when I leaned in close to kiss his ear. At one visit there was an odd shift in his posture I couldn't quite put my finger on. The nurse explained he had lost bowel control and asked to be positioned on a bed pan during the visiting hour “so people wouldn't know and there wouldn't be such a mess”. I had two different nurses quote that exactly to me.
In between the brief windows of visiting, I sat in the MICU waiting room. There was no masseuse, manicurist, or the lovely assembly line in Wizard of Oz, preparing one to walk the gauntlet. Not that I expected such a thing, of course, I just happened to notice their absence.
I made the acquaintance of a very nice Amish family who's 20yr old son was in a coma (for two weeks) from a single car accident—he was driving. Most of my time there I spent alone, which I welcomed, but I suspect they found my solitude troubling--the Amish being programmed to community, and the Irish being left to the solitary. It is amazing what voids are bridged in such circumstances. They shared their story with me and inquired politely of mine. You build strange relationships in the MICU waiting room. For some of us it is a home away from home. For others it is a brief holding pattern before touch down; and for a few it is a major, annoying intrusion to their busy lives that must be endured and departed as quickly as possible. It's amazing what you can learn about a person from one side of a cell phone conversation.
I made best friends with the coffee machine. It became a deep and meaningful relationship.
By the third day I stopped living in fear of visiting the restroom lest a doctor might come looking for me to share information. The flow of my bladder was far more reliable than the flow of information. You grow up hard and fast in the MICU waiting room.
I hated the wall of glass between our chilled room of hard seats and the hallway where doctors and staff and the occasional lost visitor walked past, looking in on us like we were freaks in a side show. Except the doctors. They ALWAYS averted their gaze from our wreckage—their discomfort was palpable. I learned early on to sit with my back to the glass wall lest I catch a glimpse of one of Rich's doctors and get hopeful they might have a word for me.
I filled the hours between “the precious minutes” with knitting, or writing, with silent meditation woven through it all. I have a beautiful crystal rosary that I still cherish these many years after I proved to be a horrible failure to the Catholic Church—no hard feelings. I said My Version of the Rosary several times (I'm faithful to the Hail Marys, but I get real creative on the in-between parts). Mostly I sent Reiki to Rich, and his care givers, and the Amish boy and his family, the new babies in my life and the ones on the way.
I remembered what I learned from Richard Bach.....There's No Such Place as Far Away... It didn't matter where I was, I was still with him. It didn't matter if I could see, or know or even understand what was happening at any given moment. All that mattered was that Rich had decided to fight, and I was his wing man, and a wing man doesn't fly in the same plane.
Pardon the “TOP GUN” reference, but I'm asking Santa for a green T-shirt with the word “GOOSE” in gold on the back. Don't think I haven't called Santa into the mix!!
You walk down hallways, through locked doors that open magically
IF the Time Is Right. Doors that make a very distinctive magic opening sound no less impressive than Dorothy entering the grand hallway to see the Wizard. You have entered the inner sanctum—a honeycomb of similar rooms with similar equipment all opening into the one big circular hallway wrapping around the giant nurses' station hub where doctors sit with charts and make important decisions, and staff discusses the latest gossip, diets, and American Idol. I try to keep my gaze straight and lowered, respecting the patients in their honeycomb cells and the “loved ones” with them—tho I'm amazed when from the corner of my eye I spot a solitary visitor sitting far from the bedside, reading the newspaper. It is a blip on my radar that I find a bit painful. If you don't want to be here, could I please have your token so that I could have a little more time here in the Land of Oz? I continue walking past without expectation.
As I'm ushering one family member through the gauntlet to Rich's bedside, she remarks on how different these rooms are from regular hospital rooms. The Large room with a full glass wall facing the nurses' desk and the HUGE doorways. I explain the necessity of monitoring and the large openings are so they can quickly get all the equipment and personnel in the room if the patient Codes. I hear her gasp and I quickly assure her.. “No, really, that's a good thing”.
I catch snippets of staff conversation and smile. This is, after all, their workday, this is normal for them. I take an odd comfort in knowing that this is normal for SOMEONE. I just wish they would talk a bit quieter so as not to distract the doctors with the charts making important decisions. My life hangs on such decisions.
The mystery of MICU is that given the time spans between brief visits, you never know what you will find.
One visit I found him upgraded to a nasal cannula for oxygen, vitals on the monitor nearly meeting goal, eyes open and bright, a smile for me. He was too tired to talk much, but he managed to assure me he would be okay. Six hours later and he was back on a re-breather mask, the monitor kept alarming and he did not respond to my touch, my voice or my tears. You learn to use the long walk in this gated community to breathe deeply and prepare yourself for whatever awaits you.
For the most part, the nurses avoid being in the room during visiting minutes. Maybe they're respecting your privacy, maybe they're afraid you'll ask questions. Let's face it, if your nursing choice is the high stress of MICU, conversation is not a priority for you.
He was always freshly bathed before the visiting hour. I used to bathe patients and I could tell. Everything fresh, bedding neatly arranged and the barest waft of baby powder when I leaned in close to kiss his ear. At one visit there was an odd shift in his posture I couldn't quite put my finger on. The nurse explained he had lost bowel control and asked to be positioned on a bed pan during the visiting hour “so people wouldn't know and there wouldn't be such a mess”. I had two different nurses quote that exactly to me.
In between the brief windows of visiting, I sat in the MICU waiting room. There was no masseuse, manicurist, or the lovely assembly line in Wizard of Oz, preparing one to walk the gauntlet. Not that I expected such a thing, of course, I just happened to notice their absence.
I made the acquaintance of a very nice Amish family who's 20yr old son was in a coma (for two weeks) from a single car accident—he was driving. Most of my time there I spent alone, which I welcomed, but I suspect they found my solitude troubling--the Amish being programmed to community, and the Irish being left to the solitary. It is amazing what voids are bridged in such circumstances. They shared their story with me and inquired politely of mine. You build strange relationships in the MICU waiting room. For some of us it is a home away from home. For others it is a brief holding pattern before touch down; and for a few it is a major, annoying intrusion to their busy lives that must be endured and departed as quickly as possible. It's amazing what you can learn about a person from one side of a cell phone conversation.
I made best friends with the coffee machine. It became a deep and meaningful relationship.
By the third day I stopped living in fear of visiting the restroom lest a doctor might come looking for me to share information. The flow of my bladder was far more reliable than the flow of information. You grow up hard and fast in the MICU waiting room.
I hated the wall of glass between our chilled room of hard seats and the hallway where doctors and staff and the occasional lost visitor walked past, looking in on us like we were freaks in a side show. Except the doctors. They ALWAYS averted their gaze from our wreckage—their discomfort was palpable. I learned early on to sit with my back to the glass wall lest I catch a glimpse of one of Rich's doctors and get hopeful they might have a word for me.
I filled the hours between “the precious minutes” with knitting, or writing, with silent meditation woven through it all. I have a beautiful crystal rosary that I still cherish these many years after I proved to be a horrible failure to the Catholic Church—no hard feelings. I said My Version of the Rosary several times (I'm faithful to the Hail Marys, but I get real creative on the in-between parts). Mostly I sent Reiki to Rich, and his care givers, and the Amish boy and his family, the new babies in my life and the ones on the way.
I remembered what I learned from Richard Bach.....There's No Such Place as Far Away... It didn't matter where I was, I was still with him. It didn't matter if I could see, or know or even understand what was happening at any given moment. All that mattered was that Rich had decided to fight, and I was his wing man, and a wing man doesn't fly in the same plane.
Pardon the “TOP GUN” reference, but I'm asking Santa for a green T-shirt with the word “GOOSE” in gold on the back. Don't think I haven't called Santa into the mix!!
Tuesday, August 17, 2010
How to tell you.... Part Two
I don't know how to tell you this...
At five am, after 90 minutes of sleep I am listening to a complete stranger who has identified herself as the doctor assigned to my husband's comfort care and end of days tell me that when she went to check on him, he sat up in bed, was totally alert and oriented, gave an accurate case history and then informed her that he wanted her to do everything possible to give him “one more chance.” He used words and phrases known only to me so I knew what she was saying had to be real.
I realized she was as confused as I was. She told me she was stunned by their conversation. She excused herself from his room only to make sure she was in the right room. She called down to ER and had the doctor there reiterate the report they had previously given her. Because, in her words, this didn't seem possible. It seemed she was trying to convince herself as much as me. She explained in detail how she had verified Rich's ability to make decisions despite the papers I had signed and the account from ER.
“So what I need to know from you,” she said hesitantly, “is given his diagnosis, and everything you have in place, and what I've just told you....what do you want me to do?”
Without hesitation I told her “Do whatever he asks. Please do whatever he wants. I promise I will back you.”
She started back peddling on the lack of guarantees, and blah, blah blah. I did not have the desire or energy to listen. I got another couple of hours of sleep and headed back to the hospital. He was in PICU. He appeared exhausted, but now and then he was able to converse. Saturday was a blur for me. Further confirmation of why I have NEVER enjoyed roller coasters. Especially those powered by my own adrenalin.
They placed an NG tube. They placed a central line on the right side of his neck. His feet and legs began to swell. His hands were slightly puffy. He drifted in and out, more like he was just very sleepy rather than confused or disoriented. Family appeared. Staff wandered in and out and delivered information that boiled down to controlled confusion. He was septic, his kidneys had shut down, liver function was maybe 40 percent; his A-fib—controlled for over four years was now out of control and complicating everything.
Every time a doctor entered the room I was given information that made me feel I was about to agree to everything that Rich and I had agreed we didn't want him to suffer through. At every one of those moments of doubt, Rich would magically enter the conversation—smile at me through his fog and say, “hey, pupshun...” squeeze my hand and drift away again.
By 7:30 pm I was dead on my feet and didn't argue with my brother driving me home. The next morning I got a text from my son. “Rich moved to MICU. They're going to intubate.”
The difference between PICU and MICU is the difference between a punch to the gut and having your heart ripped out.
I got to MICU at 07:00. THE visiting HOUR was over. The hospital had not called to inform me of his move. I was desperate to see him. Too bad. I managed to sneak in because I know how to do that but his nurse caught me in 5 minutes and informed me I would have to leave “because the doctors will be rounding and they don't like family present.” I explained that I would sit quietly until they arrived and then slip away...I begged for just a few minutes. His nurse explained the rules, and when I attempted to offer a deal, she offered to call security. I was in tears and begging her, explaining his diagnosis and this might be the last time I would have with him, “Please don't take this from me...” and she said “Please don't make me call security.”
I got up off my knees with the little dignity I had left and whispered “bless you”.
I don't know how I managed that. I was totally exhausted from the effort of not slapping the Ba-jeezus out of her. I found my way to the MICU waiting room, thinking “this is a marathon, not a sprint, and I cannot afford to make any enemies”.
For the next four days I lived in MICU limbo—visiting hours 5 am to 6 am; noon to 1 pm; 4 pm to 6 pm; 8 pm to 9 pm. Think about that schedule. The long hours between the precious minutes of sitting bedside, during which time you have hit the lottery if a doctor walks in the room and speaks to you. Should you miss that small window of opportunity you are screwed because they will NOT come find you in the MICU waiting room to tell you ANYTHING. Leaving your cell phone number with desperate requests just annoys them.
About every third visiting window I got lucky and was blessed with the presence of a doctor. They told me what they were doing and I gushed gratitude. I got the menu of “If—Then Scenarios” without knowing who was ordering or who was cooking. I just had to keep swallowing.
All I could do was focus on Richard. Once in awhile he would have something to say. He seldom knew where he was. Usually he would claim he was in Orville. When the alarms were going crazy on his monitor he would ask why we were in the airport and couldn't we go home now? He always recognized me, and the “family” I would take in to see him. To medical staff he did not speak unless spoken to and it would be weeks before I learned why, but as ever he was always “please” and “thank you”, even if it was hard to understand the rest of what he said or asked.
With six IV's going non-stop, a feeding tube, a monitor that was almost constantly alarming and his face nearly covered by a re-breather mask, I was a bit disturbed by what captured my attention... Each time a doctor entered the room, came up to the side of the bed and introduced himself, Rich would reach up his right hand toward the doctor. Even if his eyes were closed and he could barely speak, the hand would go up, reaching. And the doctor would back away. And Rich would keep reaching for him until I took his hand. The third time I witnessed this I said politely, “he's trying to shake hands with you.” The doctor looked at me like I had lost my mind. (no shit, really?!?) I didn't bother again.
Only one doctor took Rich's hand immediately when it was offered and it was all I could do not to burst into tears of gratitude. He held Rich's hand the whole time he talked to us. Rich appeared totally “out of it” but when the doctor was done answering my questions, Rich nodded, said “thank you” and released his hand. Rich spoke of this experience weeks later, but his version in no way resembled anything that actually occurred.
At five am, after 90 minutes of sleep I am listening to a complete stranger who has identified herself as the doctor assigned to my husband's comfort care and end of days tell me that when she went to check on him, he sat up in bed, was totally alert and oriented, gave an accurate case history and then informed her that he wanted her to do everything possible to give him “one more chance.” He used words and phrases known only to me so I knew what she was saying had to be real.
I realized she was as confused as I was. She told me she was stunned by their conversation. She excused herself from his room only to make sure she was in the right room. She called down to ER and had the doctor there reiterate the report they had previously given her. Because, in her words, this didn't seem possible. It seemed she was trying to convince herself as much as me. She explained in detail how she had verified Rich's ability to make decisions despite the papers I had signed and the account from ER.
“So what I need to know from you,” she said hesitantly, “is given his diagnosis, and everything you have in place, and what I've just told you....what do you want me to do?”
Without hesitation I told her “Do whatever he asks. Please do whatever he wants. I promise I will back you.”
She started back peddling on the lack of guarantees, and blah, blah blah. I did not have the desire or energy to listen. I got another couple of hours of sleep and headed back to the hospital. He was in PICU. He appeared exhausted, but now and then he was able to converse. Saturday was a blur for me. Further confirmation of why I have NEVER enjoyed roller coasters. Especially those powered by my own adrenalin.
They placed an NG tube. They placed a central line on the right side of his neck. His feet and legs began to swell. His hands were slightly puffy. He drifted in and out, more like he was just very sleepy rather than confused or disoriented. Family appeared. Staff wandered in and out and delivered information that boiled down to controlled confusion. He was septic, his kidneys had shut down, liver function was maybe 40 percent; his A-fib—controlled for over four years was now out of control and complicating everything.
Every time a doctor entered the room I was given information that made me feel I was about to agree to everything that Rich and I had agreed we didn't want him to suffer through. At every one of those moments of doubt, Rich would magically enter the conversation—smile at me through his fog and say, “hey, pupshun...” squeeze my hand and drift away again.
By 7:30 pm I was dead on my feet and didn't argue with my brother driving me home. The next morning I got a text from my son. “Rich moved to MICU. They're going to intubate.”
The difference between PICU and MICU is the difference between a punch to the gut and having your heart ripped out.
I got to MICU at 07:00. THE visiting HOUR was over. The hospital had not called to inform me of his move. I was desperate to see him. Too bad. I managed to sneak in because I know how to do that but his nurse caught me in 5 minutes and informed me I would have to leave “because the doctors will be rounding and they don't like family present.” I explained that I would sit quietly until they arrived and then slip away...I begged for just a few minutes. His nurse explained the rules, and when I attempted to offer a deal, she offered to call security. I was in tears and begging her, explaining his diagnosis and this might be the last time I would have with him, “Please don't take this from me...” and she said “Please don't make me call security.”
I got up off my knees with the little dignity I had left and whispered “bless you”.
I don't know how I managed that. I was totally exhausted from the effort of not slapping the Ba-jeezus out of her. I found my way to the MICU waiting room, thinking “this is a marathon, not a sprint, and I cannot afford to make any enemies”.
For the next four days I lived in MICU limbo—visiting hours 5 am to 6 am; noon to 1 pm; 4 pm to 6 pm; 8 pm to 9 pm. Think about that schedule. The long hours between the precious minutes of sitting bedside, during which time you have hit the lottery if a doctor walks in the room and speaks to you. Should you miss that small window of opportunity you are screwed because they will NOT come find you in the MICU waiting room to tell you ANYTHING. Leaving your cell phone number with desperate requests just annoys them.
About every third visiting window I got lucky and was blessed with the presence of a doctor. They told me what they were doing and I gushed gratitude. I got the menu of “If—Then Scenarios” without knowing who was ordering or who was cooking. I just had to keep swallowing.
All I could do was focus on Richard. Once in awhile he would have something to say. He seldom knew where he was. Usually he would claim he was in Orville. When the alarms were going crazy on his monitor he would ask why we were in the airport and couldn't we go home now? He always recognized me, and the “family” I would take in to see him. To medical staff he did not speak unless spoken to and it would be weeks before I learned why, but as ever he was always “please” and “thank you”, even if it was hard to understand the rest of what he said or asked.
With six IV's going non-stop, a feeding tube, a monitor that was almost constantly alarming and his face nearly covered by a re-breather mask, I was a bit disturbed by what captured my attention... Each time a doctor entered the room, came up to the side of the bed and introduced himself, Rich would reach up his right hand toward the doctor. Even if his eyes were closed and he could barely speak, the hand would go up, reaching. And the doctor would back away. And Rich would keep reaching for him until I took his hand. The third time I witnessed this I said politely, “he's trying to shake hands with you.” The doctor looked at me like I had lost my mind. (no shit, really?!?) I didn't bother again.
Only one doctor took Rich's hand immediately when it was offered and it was all I could do not to burst into tears of gratitude. He held Rich's hand the whole time he talked to us. Rich appeared totally “out of it” but when the doctor was done answering my questions, Rich nodded, said “thank you” and released his hand. Rich spoke of this experience weeks later, but his version in no way resembled anything that actually occurred.
Monday, August 16, 2010
I don't know how to tell you this...
On July 7th he had a chemo-embolism done on the two main tumors in his liver. We spent weeks discussing and preparing for this. Rich was all in favor of it. Although, if Dr McGee told him to sit in the backyard and eat green jello every afternoon at three, he would do it. I was silently, smilingly, hopefully hesitant. The day before the procedure I confessed to the few people I share with that I just had a bad feeling.
Objectively, it's a cool procedure. They enter the right femoral vein, and travel up to the liver, much the same way they would do a heart cath. Guided by CT scans, they locate the two big tumors (ignoring the dozens of minor tumors), locate and shut off their blood supplies, flood the surrounding healthy liver tissue with seaweed and oil for protection, then inject a bolus of chemo therapy into the tumor and then clamp it shut. They got both tumors. They were very pleased.
I would have been equally pleased if they could have done it in such a way that Rich would not have been in excrutiating pain. A little valium, a little versed, fentanyl..... ??? How stupid was I to believe them when they said they would always control his pain. He got a local. People getting heart catheterizations get better meds, and I know this because they all tell me they remember NOTHING.
July 9th I took him home. They gave him his discharge instructions while I was on my way to get him. He was on morphine. I did not know he was incapable of comprehending his discharge instructions until we were home and I realized that he had lost the patient's copy of the discharge instructions. Alone again, naturally.
July 11th we called his oncologist because he was running a temp of 101.3 Ten minutes later the covering partner (not McGee) called back. It was hard to tell if he was bored, sleepy, burnt out, or we had interrupted something... No cause for alarm. Spiking temps are fairly common with cancer. As long as it returns to normal after Tylenol, no cause for concern. I did not have the energy to point out that given the state of the liver I had determined that acetominophen was NOT the anti-febrile drug of choice. No. No worries, this is status quo for cancer.
July 12th Rich had an appointment for his monthly anti-growth hormone injection. They did a set of vitals and determined there was no cause for concern. He was, at that moment, in the down slope of fevers. They did not take blood or urine samples. Each day he got a little bit weaker. Maybe three or four times a day he would spike fevers for no more than an hour at a time. He was telling me he was doing well. I was at work and checking in by phone 3-4 times a day. He was eating like a champ, ample water, juice and tea, peeing well. I grilled him every couple of hours on possible signs and symptoms of infection.
By that Friday, July 16th, I could hear in his voice when I called him on my way home...something was different. Just a bit too tired? The spark was gone from him. I cried all the way home. When I got to him, he had rallied, laughing, joking, asking about my day. I made him a nice dinner. He wanted to watch “Casablanca”--our movie. Shit, in hindsight, there was my sign.
I dozed off before the end. About ten pm I woke suddenly to the bed shaking. Rich was shivering so hard the bed was shaking, his respirations were over 30. I jumped out of bed to dress so I could take him to the ER. By the time I got my shoes on he was stumbling to the bathroom, barely able to walk, totally incoherent. I tried to wrangle him and keep him safe while I dialed 911.
In the ambulance he was totally incoherent. He didn't know who he was or where he was, and he could barely form words and sentences. They thought he was having a stroke. I was trying to explain the matrix of stage four pancreatic cancer, and recent treatments and fevers, but I was falling into a well and I couldn't be sure anyone would hear me before I hit the bottom. It felt like forever in the blink of an eye.
In the ER they took him one way and two very nice people escorted me into a private room. I knew this was not good. I was getting the special treatment for Holy Shit cases. I barely had time to dial a phone number when they were coming to get me, and they started asking me the Holy Shit questions:
Q. “Are you here by yourself?”
Me: “No, I'm here with my husband.”
Q. “Is there family we can call for you?”
Me: “No, it's late, you'll wake them.”
Q. “Ma'am we really need to call someone for you. Who is closest to get here?”
Me:. “My son, Joe, but he's a __PD officer and he's on duty tonight so you can't bother him.”
I was ushered to the ER cubicle where Rich was, and there was a cup of coffee in my hand, and while I sat by the gurney with my hand on his leg I tried to make sense of where I was, what I'd missed, how I'd failed. It seemed like only seconds went by and I looked up and there was Joe, in uniform and my first thought was that he was coming to tell me that something had happened to one of his brothers.
I was still hugging Joe when Rich's brother appeared. We were in the room with him for awhile until they made us leave so they could do a cardio-version because his heart was in A-fib and beating at 240/minute. And then we were back with him. He seemed a bit more alert and oriented. He recognized us. But he also saw people who weren't in the room. He made jokes. He faded in and out. They had us leave the room again, and when they came out they were asking about Advanced Directives. The hallway we were standing in began to shrink, the fluorescent lights began to pierce my brain, and all the oxygen got sucked away into a void that I desperately wanted to dive into.
I heard myself calmly explaining what we had in place, what we had agreed upon, what I had promised. I heard the doctor tell me that now was the time to execute his final wishes, and as her very kind words of explanation continued to flow over me there was just the sound of the voices in my head and the gentle look on my son's face as he held my hand. I was trying to pay attention to what was being said, but I could not stop questioning at what point I might faint, or go numb, or in any way shape or form feel some measure of relief. I heard my own voice responding in what I assumed was intelligible words, phrases and complete sentences, since people around me were nodding--solemnly, agreeably. I was amazed at my ability to stifle the scream that was rumbling in my belly, threatening to explode my lungs, vocal chords and all ear drums withing a 27 yard radius.
Shortly my son Nick arrived. I could tell he was sleep deprived from working second shift and having a new baby, and now I was a burden to him in my own mind. He was trying to comfort me, and I could sense he wasn't sure how and suffering in the process. I was trudging through quick sand with concrete boots. It was now 2:00 am Sat morning and I'd been up since 4:30 Friday morning, having spent nine hours in a job in hell when I should have been home taking care of my husband so this wouldn't have happened, and other people who should be sleeping, or working or tending their brand new baby would not be dodging and catching the flying glass of my shattered life.
With lightening speed I skipped “IF ONLY” and went straight to “I SHOULD HAVE...” There was no IF, there was no IF ONLY, there was only I SHOULD HAVE.... what?
At three am we are watching staff tuck him into a bed on the oncology floor where he would receive Comfort Care Only. I think we all feel like we're turning a page. Rich is responsive—sometimes coherent, sometimes not. He thanks everyone for their effort, for their presence. He says “It's time for me to go to sleep now.”
I send Nick home to his wife and new baby. Joe has returned to his squad car after assuring me he will “keep an eye on Rich” throughout his shift. Ed drives me the long way home.
Not a word passes between us. I don't have the energy, and I suspect Ed is respecting my silence. When he pulls in my driveway, I say thank you, get out of the car and go in the house. A minor voice in my head points out how rude I've been; a louder voice says “shut up, and cut her some slack”. I trust that Ed understands.
I have the worst fucking headache of my life. I take two aspirins, a BIG glass of water and collapse into bed. I sob HARD for a minute, no more than two. Then I am at peace, and I feel the return of the “presence” in the ER hallway who guided my hand as I signed the papers to “let him go”. The soft feather grip at the back of my neck, the scent of warm honey like allysum in sunshine, and the gentle voice whispering against my ear, “just let go... and float...”
Hard shattering awakening to my cell phone ringing. It's 5 am. I've had maybe 90 minutes of sleep. This can't be good. I'm instantly more awake than I want to be; not as awake as I need to be.
The doctor identifies herself and apologizes for waking me. She has a wonderful voice, she seems to instinctively know how to speak to someone at 5 am who has had 90 minutes of sleep, on matters that are gut-wrenching. She speaks calmly, professionally, yet with the exact right measure of compassion and assurance. So, imagine my shock when the next thing out of her mouth is...
“I don't know how to tell you this....”
Objectively, it's a cool procedure. They enter the right femoral vein, and travel up to the liver, much the same way they would do a heart cath. Guided by CT scans, they locate the two big tumors (ignoring the dozens of minor tumors), locate and shut off their blood supplies, flood the surrounding healthy liver tissue with seaweed and oil for protection, then inject a bolus of chemo therapy into the tumor and then clamp it shut. They got both tumors. They were very pleased.
I would have been equally pleased if they could have done it in such a way that Rich would not have been in excrutiating pain. A little valium, a little versed, fentanyl..... ??? How stupid was I to believe them when they said they would always control his pain. He got a local. People getting heart catheterizations get better meds, and I know this because they all tell me they remember NOTHING.
July 9th I took him home. They gave him his discharge instructions while I was on my way to get him. He was on morphine. I did not know he was incapable of comprehending his discharge instructions until we were home and I realized that he had lost the patient's copy of the discharge instructions. Alone again, naturally.
July 11th we called his oncologist because he was running a temp of 101.3 Ten minutes later the covering partner (not McGee) called back. It was hard to tell if he was bored, sleepy, burnt out, or we had interrupted something... No cause for alarm. Spiking temps are fairly common with cancer. As long as it returns to normal after Tylenol, no cause for concern. I did not have the energy to point out that given the state of the liver I had determined that acetominophen was NOT the anti-febrile drug of choice. No. No worries, this is status quo for cancer.
July 12th Rich had an appointment for his monthly anti-growth hormone injection. They did a set of vitals and determined there was no cause for concern. He was, at that moment, in the down slope of fevers. They did not take blood or urine samples. Each day he got a little bit weaker. Maybe three or four times a day he would spike fevers for no more than an hour at a time. He was telling me he was doing well. I was at work and checking in by phone 3-4 times a day. He was eating like a champ, ample water, juice and tea, peeing well. I grilled him every couple of hours on possible signs and symptoms of infection.
By that Friday, July 16th, I could hear in his voice when I called him on my way home...something was different. Just a bit too tired? The spark was gone from him. I cried all the way home. When I got to him, he had rallied, laughing, joking, asking about my day. I made him a nice dinner. He wanted to watch “Casablanca”--our movie. Shit, in hindsight, there was my sign.
I dozed off before the end. About ten pm I woke suddenly to the bed shaking. Rich was shivering so hard the bed was shaking, his respirations were over 30. I jumped out of bed to dress so I could take him to the ER. By the time I got my shoes on he was stumbling to the bathroom, barely able to walk, totally incoherent. I tried to wrangle him and keep him safe while I dialed 911.
In the ambulance he was totally incoherent. He didn't know who he was or where he was, and he could barely form words and sentences. They thought he was having a stroke. I was trying to explain the matrix of stage four pancreatic cancer, and recent treatments and fevers, but I was falling into a well and I couldn't be sure anyone would hear me before I hit the bottom. It felt like forever in the blink of an eye.
In the ER they took him one way and two very nice people escorted me into a private room. I knew this was not good. I was getting the special treatment for Holy Shit cases. I barely had time to dial a phone number when they were coming to get me, and they started asking me the Holy Shit questions:
Q. “Are you here by yourself?”
Me: “No, I'm here with my husband.”
Q. “Is there family we can call for you?”
Me: “No, it's late, you'll wake them.”
Q. “Ma'am we really need to call someone for you. Who is closest to get here?”
Me:. “My son, Joe, but he's a __PD officer and he's on duty tonight so you can't bother him.”
I was ushered to the ER cubicle where Rich was, and there was a cup of coffee in my hand, and while I sat by the gurney with my hand on his leg I tried to make sense of where I was, what I'd missed, how I'd failed. It seemed like only seconds went by and I looked up and there was Joe, in uniform and my first thought was that he was coming to tell me that something had happened to one of his brothers.
I was still hugging Joe when Rich's brother appeared. We were in the room with him for awhile until they made us leave so they could do a cardio-version because his heart was in A-fib and beating at 240/minute. And then we were back with him. He seemed a bit more alert and oriented. He recognized us. But he also saw people who weren't in the room. He made jokes. He faded in and out. They had us leave the room again, and when they came out they were asking about Advanced Directives. The hallway we were standing in began to shrink, the fluorescent lights began to pierce my brain, and all the oxygen got sucked away into a void that I desperately wanted to dive into.
I heard myself calmly explaining what we had in place, what we had agreed upon, what I had promised. I heard the doctor tell me that now was the time to execute his final wishes, and as her very kind words of explanation continued to flow over me there was just the sound of the voices in my head and the gentle look on my son's face as he held my hand. I was trying to pay attention to what was being said, but I could not stop questioning at what point I might faint, or go numb, or in any way shape or form feel some measure of relief. I heard my own voice responding in what I assumed was intelligible words, phrases and complete sentences, since people around me were nodding--solemnly, agreeably. I was amazed at my ability to stifle the scream that was rumbling in my belly, threatening to explode my lungs, vocal chords and all ear drums withing a 27 yard radius.
Shortly my son Nick arrived. I could tell he was sleep deprived from working second shift and having a new baby, and now I was a burden to him in my own mind. He was trying to comfort me, and I could sense he wasn't sure how and suffering in the process. I was trudging through quick sand with concrete boots. It was now 2:00 am Sat morning and I'd been up since 4:30 Friday morning, having spent nine hours in a job in hell when I should have been home taking care of my husband so this wouldn't have happened, and other people who should be sleeping, or working or tending their brand new baby would not be dodging and catching the flying glass of my shattered life.
With lightening speed I skipped “IF ONLY” and went straight to “I SHOULD HAVE...” There was no IF, there was no IF ONLY, there was only I SHOULD HAVE.... what?
At three am we are watching staff tuck him into a bed on the oncology floor where he would receive Comfort Care Only. I think we all feel like we're turning a page. Rich is responsive—sometimes coherent, sometimes not. He thanks everyone for their effort, for their presence. He says “It's time for me to go to sleep now.”
I send Nick home to his wife and new baby. Joe has returned to his squad car after assuring me he will “keep an eye on Rich” throughout his shift. Ed drives me the long way home.
Not a word passes between us. I don't have the energy, and I suspect Ed is respecting my silence. When he pulls in my driveway, I say thank you, get out of the car and go in the house. A minor voice in my head points out how rude I've been; a louder voice says “shut up, and cut her some slack”. I trust that Ed understands.
I have the worst fucking headache of my life. I take two aspirins, a BIG glass of water and collapse into bed. I sob HARD for a minute, no more than two. Then I am at peace, and I feel the return of the “presence” in the ER hallway who guided my hand as I signed the papers to “let him go”. The soft feather grip at the back of my neck, the scent of warm honey like allysum in sunshine, and the gentle voice whispering against my ear, “just let go... and float...”
Hard shattering awakening to my cell phone ringing. It's 5 am. I've had maybe 90 minutes of sleep. This can't be good. I'm instantly more awake than I want to be; not as awake as I need to be.
The doctor identifies herself and apologizes for waking me. She has a wonderful voice, she seems to instinctively know how to speak to someone at 5 am who has had 90 minutes of sleep, on matters that are gut-wrenching. She speaks calmly, professionally, yet with the exact right measure of compassion and assurance. So, imagine my shock when the next thing out of her mouth is...
“I don't know how to tell you this....”
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