I remember reading somewhere that indigenous Alaskans have hundreds of words for snow. That made perfect sense to me. If you live daily and intimately with anything, I would imagine that you develop a relationship and over time you continue to discover and explore the innumerable facets. Of course each facet would have a name, description, personality. The relationship becomes intimate, familiar and yet ever changing and remarkable. Like snow to indigenous Alaskans.
We survived the weeks of chemo and radiation. We maneuvered the mine field of doubt and fear. We dragged Us through the Swamp of Despair. I assure you there was nothing heroic or noble about it. It was just focusing on the task at hand, interspersed with Reiki treatments, leaning into each other and every blessed moment, and long periods of trying to remember to breathe.
Suddenly one day I had a flash of awareness... that tears are like snowflakes.
I was driving to work, my vehicle having become my crying cave. My morning shower was always my best cry, what with all that hot water and the symbolism and the plain wonderful comfort of it. But that's only fifteen minutes a day max. My days were such that I was at work surrounded by people, or I was with Rich, or I was in the shower, or I was in my car for the 40 minute commute. So my vehicle became my crying cave.
I knew at what land mark on my journey I had to stop crying so that my face would have time to fall back into place before I arrived at my destination. In the morning I had to stop crying by Barges Street which would give me fifteen minutes to recover a somewhat normal appearance. Beyond Barges Street and I would have to prepare my cover story. Five minutes past Barges St and I would have to claim my allergies were acting up. Ten minutes past Barges St and I would have to add a severe headache to my allergies. Much beyond that and I would have to rub my eyes as I was walking into the office and complain loudly about being in an elevator with someone who had bathed in cologne. Luckily no one knew that I always took the stairs.
Once at work I could focus on the tasks at hand. and with rare exception I did not succumb to tears.
Driving home was a bit trickier. Route 619 was my absolute, drop dead, tears must stop point. I couldn't pull any allergy crap with Rich—you can't bullshit a bullshitter, and you can't lie to the other half of yourself. Because I had an absolute stop point, I found that I became more flexible on the start point. Sometimes I would make the half mile walk to my crying cave before letting go. Some days I barely made it to the time clock and then cried all the way to my car, and continued until reaching the intersection of 619.
I was well into this pattern when I discovered that Tears are like Snowflakes. They are far more unique than I ever would have imagined. This is what you learn when they are ever present in your life like snow in Alaska.
Some tears are wetter than others, some are saltier. Some get stuck and hang in your throat creating a lump of pain and burn. Some tears are dense and roll in slow motion down your cheek. Some tears are solitary; some tears band together and flow as a solid stream that seems it will never stop. Some tears are silent and some require two pillows to muffle the gut wrenching wails. Some tears hover in the bridge of your nose, threatening a flood as they build the pressure behind your eyes; some tears burst free unexpectedly causing you to duck your head and pretend a sneeze or cough to hide your embarassement. Some tears flow peacefully and passively; some wrench every muscle of the body into spasms. They flow from the eyes, ooze out the nose and burn down the back of the throat. Some tears are desperate prayers, some are angry rages, some are endless fear. Some tears are the backdrop for your private Pity Party. Some tears are purging and healing; some are shear exhaustion. Mostly, they are private.
Thankfully, the exact acceptable amount of tears have flowed in the presence of others—any more and people would want me medicated, any less and they would fear I was living in denial, or had no heart at all. Those are the tears for others that assure them I am appropriately processing the devastation of my universe. The remaining 99% of my tears are MINE. I guard them protectively like a treasured snow globe on the mantle that only I am allowed to tumble and hold in my hands—each flake encased, meaningful and treasured .
Many people comment on how well I'm holding up, which is hard for me to comprehend since Tears are my second job. Some women live a secret life as a stripper or call girl. My secret life is crying. My Indian name would be “Hides Her Tears”. I would share this with my best friend, but he's the one I need to protect. If he knew how I cried it would break his heart, or worse, he might think I don't believe we will beat this. And I do believe, even when the tears are falling like snowflakes. No two alike.
Friday, August 6, 2010
Thursday, August 5, 2010
Leave it to the answering machine
You find out who your friends are.
I hate that saying because a) It's True, and b) it's deceptive.
In the first 24 hours we discussed all the aspects of how and when to inform the people in our lives that we have been thrust into the world of Stage Four Pancreatic Cancer.
I had no need or desire to tell anyone anything, other than the barest details required for functioning which in my mind meant basic information in order to secure my employment.
But that's just me. I'm a frustrated hermit. I can be content for days and days without any human contact.
Rich, on the other hand, is a People Person. Not only does he have a network of friends that rivals anything Facebook could engineer, unlike Facebook, there is Nothing superficial about it. He genuinely cares about how our announcement will affect each and every person that is close enough to receive the news from him directly.
It's important to note here that at this point, we were sans biopsy and therefore could only offer Stage Four Pancreatic Cancer. Four words that deliver a preconceived notion of doom and gloom.
I just watch and listen. He IS the captain of this ship after all. By prior agreement, we have determined a hand picked group that will be our point guards. Unbeknownst to them. He bestows the boon with such grace and affection that each person expresses gratitude for the burden. His brother will be in charge of the family; Inky will be in charge of the local throngs of guy friends; Wade will be in charge of the family/friends on the Eastern Shore; Denise will keep everyone in the Master Gardener's Program informed; Buddy is in charge of the Friends of Dorothy. Listening to him speak to these people, I cannot be sad. I am astounded at the ease with which he announces the state of affairs, and then seamlessly glides into assurances that he will be fine, interspersed with attempts to answer their stunned questions, and then jokes about the doctors using chemo while he uses the Three Stooges and Mel Brooks.
Even at this early stage Rich realizes what the future may hold and he's trying to make things as easy for me as possible—point people I trust who will shield me from the throngs. This is how we proceed—Rich will take care of his peeps, and I will take care of Rich. It is not spoken; it is understood. And like every day since we met, we relax into the rhythm that is Us curving around and into each other.
I was thinking it would be nice if there was some kind of announcement I could mail out for this. Yep, Hallmark needs to get all over that. It would be easier on both sides. Mass mailing, apply stamp and drop in the mail. The recipient would open it, deal with the shock in their own way and not have to worry about What To Say. After adequate processing they could call or write or pretend they never got it and we could all just move on in whatever way seems appropriate for all involved. I've given considerable thought to what such a missive should look like. Not as formal as a wedding invitation, but a bit more dignified than a baby shower invitation. This is after all, the announcement of a major life endeavor. I would like it to read as follows...
We just received a diagnosis of Stage Four Pancreatic Cancer
We are hopeful and determined
Please understand that we are shocked and exhausted. We are in for the fight of our lives so we will be unable to expend energy to take incoming calls or return phone messages.
Your prayers and best wishes are most appreciated. We promise to call if we need something that you can provide.
Then...for those who can't read or follow written instructions I would put a similar message on my answering machine. Because hindsight IS 20-20. And despite having point people in place, I was shocked by the messages left on our machine and the calls I dealt with. The calls come in three stages. FIRST: they express concern and “if there's anything you need, just call.”
SECOND: ...”It's me again, hope everything is going okay. We're here if you need us. Give us a call and let us know what's going on.”
THIRD... “Uh, yeah...left you a message....you haven't called back. Really like an update on what's going on. Call me.”
This last call is dripping with enough major attitude that I get an adrenalin rush from resisting the urge to rip the phone out of the wall and smash it through a window. I feel huge incentive to call them back to apologize profusely for failing to fill them in on the gory details, fifteen second conversations with doctors, and assure them that their concern means so much to us. In my defense I would explain that if I were to call everyone who feels entitled to be kept in the loop, I would have no time to go to work, do laundry, cut the grass, clean the house, or tend to my personal hygiene let alone take care of Rich. Sorry. My bad.
Once I made the mistake of answering the phone instead of allowing the machine to get it. The caller was demanding to know if Rich was “going to be able to golf this summer” because he was running the golf league and had to set up whatever it is that one has to set up for a golf league. After I confirmed that he knew Rich was in the hospital, and why, I just couldn't think of how to respond. I apologized for any inconvenience this was causing him and thankfully he forgave me but...”just have him call right away, so I can get this league going.”
Thankfully, these people are the minority, but one is too many. Three is a freakin' nightmare. I feel like the major car wreck on the side of the road that every one is slowing down to gape at.
I cringe at how bitchy and ungrateful I must appear here. I understand that 95% of people mean well, and they care about Rich. What 95% of these people don't understand is that I am exhausted. I have a 40 minute drive to get to his bedside at 7 am, at work by 8 am; visit him at lunch time; visit him after work, 40 minute drive home to do what chores I can and play the messages on the answering machine. Each of them just wants one phone call, but their requests combined are not just one phone call for me. I just can't repeat the story that many times. That's what I thought my point people were for—I call six people and each of them calls six people, et cetera. Work with me, people, it's your basic pyramid scheme for crissakes with no membership fees!
Here's your sign.... If you weren't calling me every now and then to chat BEFORE this happened, I do not feel obliged to report to you now.
Okay, bottom line here is that I'm not a people person. Not in that light and happy, sweet and snappy sort of way. But I get points for being at all times polite. Rich said so.
I hate that saying because a) It's True, and b) it's deceptive.
In the first 24 hours we discussed all the aspects of how and when to inform the people in our lives that we have been thrust into the world of Stage Four Pancreatic Cancer.
I had no need or desire to tell anyone anything, other than the barest details required for functioning which in my mind meant basic information in order to secure my employment.
But that's just me. I'm a frustrated hermit. I can be content for days and days without any human contact.
Rich, on the other hand, is a People Person. Not only does he have a network of friends that rivals anything Facebook could engineer, unlike Facebook, there is Nothing superficial about it. He genuinely cares about how our announcement will affect each and every person that is close enough to receive the news from him directly.
It's important to note here that at this point, we were sans biopsy and therefore could only offer Stage Four Pancreatic Cancer. Four words that deliver a preconceived notion of doom and gloom.
I just watch and listen. He IS the captain of this ship after all. By prior agreement, we have determined a hand picked group that will be our point guards. Unbeknownst to them. He bestows the boon with such grace and affection that each person expresses gratitude for the burden. His brother will be in charge of the family; Inky will be in charge of the local throngs of guy friends; Wade will be in charge of the family/friends on the Eastern Shore; Denise will keep everyone in the Master Gardener's Program informed; Buddy is in charge of the Friends of Dorothy. Listening to him speak to these people, I cannot be sad. I am astounded at the ease with which he announces the state of affairs, and then seamlessly glides into assurances that he will be fine, interspersed with attempts to answer their stunned questions, and then jokes about the doctors using chemo while he uses the Three Stooges and Mel Brooks.
Even at this early stage Rich realizes what the future may hold and he's trying to make things as easy for me as possible—point people I trust who will shield me from the throngs. This is how we proceed—Rich will take care of his peeps, and I will take care of Rich. It is not spoken; it is understood. And like every day since we met, we relax into the rhythm that is Us curving around and into each other.
I was thinking it would be nice if there was some kind of announcement I could mail out for this. Yep, Hallmark needs to get all over that. It would be easier on both sides. Mass mailing, apply stamp and drop in the mail. The recipient would open it, deal with the shock in their own way and not have to worry about What To Say. After adequate processing they could call or write or pretend they never got it and we could all just move on in whatever way seems appropriate for all involved. I've given considerable thought to what such a missive should look like. Not as formal as a wedding invitation, but a bit more dignified than a baby shower invitation. This is after all, the announcement of a major life endeavor. I would like it to read as follows...
We just received a diagnosis of Stage Four Pancreatic Cancer
We are hopeful and determined
Please understand that we are shocked and exhausted. We are in for the fight of our lives so we will be unable to expend energy to take incoming calls or return phone messages.
Your prayers and best wishes are most appreciated. We promise to call if we need something that you can provide.
Then...for those who can't read or follow written instructions I would put a similar message on my answering machine. Because hindsight IS 20-20. And despite having point people in place, I was shocked by the messages left on our machine and the calls I dealt with. The calls come in three stages. FIRST: they express concern and “if there's anything you need, just call.”
SECOND: ...”It's me again, hope everything is going okay. We're here if you need us. Give us a call and let us know what's going on.”
THIRD... “Uh, yeah...left you a message....you haven't called back. Really like an update on what's going on. Call me.”
This last call is dripping with enough major attitude that I get an adrenalin rush from resisting the urge to rip the phone out of the wall and smash it through a window. I feel huge incentive to call them back to apologize profusely for failing to fill them in on the gory details, fifteen second conversations with doctors, and assure them that their concern means so much to us. In my defense I would explain that if I were to call everyone who feels entitled to be kept in the loop, I would have no time to go to work, do laundry, cut the grass, clean the house, or tend to my personal hygiene let alone take care of Rich. Sorry. My bad.
Once I made the mistake of answering the phone instead of allowing the machine to get it. The caller was demanding to know if Rich was “going to be able to golf this summer” because he was running the golf league and had to set up whatever it is that one has to set up for a golf league. After I confirmed that he knew Rich was in the hospital, and why, I just couldn't think of how to respond. I apologized for any inconvenience this was causing him and thankfully he forgave me but...”just have him call right away, so I can get this league going.”
Thankfully, these people are the minority, but one is too many. Three is a freakin' nightmare. I feel like the major car wreck on the side of the road that every one is slowing down to gape at.
I cringe at how bitchy and ungrateful I must appear here. I understand that 95% of people mean well, and they care about Rich. What 95% of these people don't understand is that I am exhausted. I have a 40 minute drive to get to his bedside at 7 am, at work by 8 am; visit him at lunch time; visit him after work, 40 minute drive home to do what chores I can and play the messages on the answering machine. Each of them just wants one phone call, but their requests combined are not just one phone call for me. I just can't repeat the story that many times. That's what I thought my point people were for—I call six people and each of them calls six people, et cetera. Work with me, people, it's your basic pyramid scheme for crissakes with no membership fees!
Here's your sign.... If you weren't calling me every now and then to chat BEFORE this happened, I do not feel obliged to report to you now.
Okay, bottom line here is that I'm not a people person. Not in that light and happy, sweet and snappy sort of way. But I get points for being at all times polite. Rich said so.
Wednesday, August 4, 2010
When it comes to the medical nuts and bolts of cancer, there's not a whole lot I can tell you that will be knew and enlightening. There are so many different types and every case is different. If you're reading this blog, chances are you already know the horrors of chemo and radiation, and there's not jack I can say that will pretty that up. In a nutshell, he started radiation on June 22. He was supposed to start Xoleda at the same time, but our insurance denied the chemo. I'll repeat that: Our insurance denied his chemo. Don't think about that last statement for too long or little capillaries in your eyeballs will explode.
So the chemo was about two weeks late getting started, and wouldn't have happened then if not for a wonderful man named “Tim” in Dr McGee's office who battled those demons. I got to pick up the Rx at the pharmacy... a rather large brown plastic bottle, as Rx bottles go. It was $3,432. With my co-pay only $75. I felt a bit weepy with the gratitude of being able to afford it.
I took the giant horse pills home, poured them into a beautiful glass container with a silver lid. I curled up in my big, fluffy magic chair, held the container in my cupped hands and infused our pellets of hope with 45 minutes of Reiki. Three pills by mouth, three times a day, with a whopping dose of radiation to the pancreas every day at three pm, Monday thru Friday.
For a long time, Rich was managing well, I was able to continue working, which was a good thing because I had very little PTO built up. He drove himself everyday to radiation, and could manage not only his own care but took pride in accomplishing a few household chores each day (with the exception of cleaning the cats' litter box!)
The miniature dachsund I adopted a few months prior has become increasingly needy (as if that were possible), so every morning I make sure she gets thirty minutes on the treadmill so that when I leave for work she'll be too tired to bark non-stop to get Rich up to give her attention.
By July 7th he's starting to lose his appetite, and he no longer wants to participate with the Willard's Water and Protocel that we started in May. It's hard for me to be patient with this. He's religiously following the radiation and poisoning that the medical profession dictates, but my holistic efforts are the first to be rejected. I'm trying to be grateful that he's still allowing me to juice for him with the Vita-Mix I ordered the week he was diagnosed. (Seriously—if you have a Vita-Mix, juice IS a verb). Every morning since he got home from the hospital, I prepare a disgustingly healthy smoothy and have it waiting for him in the fridge. Every day I come home and feel complete if I see that he has consumed it. Some days I wonder if he just poured it down the drain to spare us both—his agony if he drinks it; mine if he doesn't.
I soon discover that nutritional value is inversely proportionate to yummyness. I awake each morning with the goal to find the perfect balance between the two, not always with success. It is not as easy as one would think. Honey can only do so much. Tofu is easy, brewer's yeast is tricky. Beets and tomatoes are surprisingly easy to hide, being complimentary in both color and flavor. Parsley is ruled out on the first try. Wheat grass shows tremendous potential for flavor and nutrition, but it has a very short shelf life. Besides, I cannot explain how off the chart yummy a drink has to be to offset the fact that it's green. ( And before you jump to the obvious, I need to state that I am Irish and I find green beer on St Patty's Day to be as sinful as it is disgusting.) I make countless attempts to find the perfect partners to broccoli and brussel sprouts, and my frustration with repeated failures takes my determination to higher levels. I just about give up on broccoli, and even brussel sprouts require a 5 to 1 fruit ratio to make it tolerable.
To answer the obvious question—Why not buy the new fruit/veggie drinks now on the market? Because they are expensive, packaged in plastic, they are processed, and they are full of artificial chemicals, flavorings and preservatives. They serve a useful purpose, but not the purpose I need to serve. Don't take my word for it, check with Jack LaLane and Montel Williams.
We've always eaten healthy, but since the diagnosis nutrition has become my religion, and organic is my dogma. And like any religion, there are times when my best efforts feel like a placebo.
I become a master of supplementing everything I cook with extra vitamins, minerals and nutrients, and nothing is exempt. From tuna noodle casserole to oatmeal cookies I can hide substances—drug mules have nothing on me.
The good news is that while his appetite diminishes with each day of chemo and radiation, he is completely free of nausea and vomiting. Facial hair is not affected by chemo, so there's no danger of losing his famous bushy mustache, and as he said himself, “I'm already bald, so THERE!”
This is tough, but not only are we tougher, we're greater than the sum of our parts. Each day we continue to believe that we are going to beat this.
So the chemo was about two weeks late getting started, and wouldn't have happened then if not for a wonderful man named “Tim” in Dr McGee's office who battled those demons. I got to pick up the Rx at the pharmacy... a rather large brown plastic bottle, as Rx bottles go. It was $3,432. With my co-pay only $75. I felt a bit weepy with the gratitude of being able to afford it.
I took the giant horse pills home, poured them into a beautiful glass container with a silver lid. I curled up in my big, fluffy magic chair, held the container in my cupped hands and infused our pellets of hope with 45 minutes of Reiki. Three pills by mouth, three times a day, with a whopping dose of radiation to the pancreas every day at three pm, Monday thru Friday.
For a long time, Rich was managing well, I was able to continue working, which was a good thing because I had very little PTO built up. He drove himself everyday to radiation, and could manage not only his own care but took pride in accomplishing a few household chores each day (with the exception of cleaning the cats' litter box!)
The miniature dachsund I adopted a few months prior has become increasingly needy (as if that were possible), so every morning I make sure she gets thirty minutes on the treadmill so that when I leave for work she'll be too tired to bark non-stop to get Rich up to give her attention.
By July 7th he's starting to lose his appetite, and he no longer wants to participate with the Willard's Water and Protocel that we started in May. It's hard for me to be patient with this. He's religiously following the radiation and poisoning that the medical profession dictates, but my holistic efforts are the first to be rejected. I'm trying to be grateful that he's still allowing me to juice for him with the Vita-Mix I ordered the week he was diagnosed. (Seriously—if you have a Vita-Mix, juice IS a verb). Every morning since he got home from the hospital, I prepare a disgustingly healthy smoothy and have it waiting for him in the fridge. Every day I come home and feel complete if I see that he has consumed it. Some days I wonder if he just poured it down the drain to spare us both—his agony if he drinks it; mine if he doesn't.
I soon discover that nutritional value is inversely proportionate to yummyness. I awake each morning with the goal to find the perfect balance between the two, not always with success. It is not as easy as one would think. Honey can only do so much. Tofu is easy, brewer's yeast is tricky. Beets and tomatoes are surprisingly easy to hide, being complimentary in both color and flavor. Parsley is ruled out on the first try. Wheat grass shows tremendous potential for flavor and nutrition, but it has a very short shelf life. Besides, I cannot explain how off the chart yummy a drink has to be to offset the fact that it's green. ( And before you jump to the obvious, I need to state that I am Irish and I find green beer on St Patty's Day to be as sinful as it is disgusting.) I make countless attempts to find the perfect partners to broccoli and brussel sprouts, and my frustration with repeated failures takes my determination to higher levels. I just about give up on broccoli, and even brussel sprouts require a 5 to 1 fruit ratio to make it tolerable.
To answer the obvious question—Why not buy the new fruit/veggie drinks now on the market? Because they are expensive, packaged in plastic, they are processed, and they are full of artificial chemicals, flavorings and preservatives. They serve a useful purpose, but not the purpose I need to serve. Don't take my word for it, check with Jack LaLane and Montel Williams.
We've always eaten healthy, but since the diagnosis nutrition has become my religion, and organic is my dogma. And like any religion, there are times when my best efforts feel like a placebo.
I become a master of supplementing everything I cook with extra vitamins, minerals and nutrients, and nothing is exempt. From tuna noodle casserole to oatmeal cookies I can hide substances—drug mules have nothing on me.
The good news is that while his appetite diminishes with each day of chemo and radiation, he is completely free of nausea and vomiting. Facial hair is not affected by chemo, so there's no danger of losing his famous bushy mustache, and as he said himself, “I'm already bald, so THERE!”
This is tough, but not only are we tougher, we're greater than the sum of our parts. Each day we continue to believe that we are going to beat this.
Monday, August 2, 2010
On the 0-10 Pain Scale....Stupid = 8
Coming out of the anesthesia, Rich is increasingly disturbed by the pain and discomfort from his catheter. He is crying from the pain of not being able to pee. We explain there's a catheter; but we quickly realize the catheter is not draining. As it worsens, I begin to request the matter be addressed, with increasing urgency. Fifteen minutes from my initial request, Rich is writhing in pain. The surgery resident appears. Rich's nurse reports the situation in such a manner that I feel confident the matter will be addressed without delay. Another fifteen minutes of Rich's pain and suffering increasing and I'm becoming disturbed.
It seems the surgical resident wants a bladder scan to determine how to proceed. On hearing this, I'm ready to pull the can opener out of my pocket so as to open the Number Ten can of Whoop Ass. I'm trying to CALMLY explain to the resident that the man is writhing in pain and the foley is not draining any urine... so a). something is wrong with the foley and it needs to come out or b) something is wrong with the foley and it needs to come out. A bladder scan isn't going to mean jack shit... Pull the goddamn foley!!!!
(Please reference the scene in Terms of Endearment when Shirley McLaine was going ape-shit to get Debra Winger her pain meds.)
Luckily Bob Pyett was there to grab me by the scruff of the neck before I committed a Class A Felony. Yeah, it turns out there was a problem with the position of the foley causing blockage and once they removed it, he was peeing just fine.
The next day Rich was doing better and some friends were in to visit. In walks the Radiology Resident. Introduces herself and without asking the patient's permission to discuss his case in front of those present, she begins to rapid-fire announce radiology's plans for his treatment. They're going to fit him for a sling that will contort him into the correct position for optimal radiation. Every day Monday through Friday. Today is Thursday, they'll start Monday. By the third or fourth week he will experience loss of bowel control, possible loss of bladder control. This treatment will proceed for approximately 8 weeks and he will be given chemotherapy concurrently which can cause nausea and vomiting. Everything possible will be done to control your pain. Do you have any questions?
Yeah, my questions, in no particular order, are 1) HIPPA?, 2) common decency? 3) human compassion?
Verbally I pose the following... “His surgeon says nothing will happen until the 37 staples are removed from his abdomen. His surgeon and oncologist have outlined three different options, none of which we have decided upon thus far, and none of which include anything you've just mentioned. So my question is... are ya'll talking to each other? Because I'm thinking ya'll are not talking to each other.”
She stammered and stuttered and slithered away. I looked at my husband, who was in shock, I looked at our friends who were stunned and appalled, I tried to deep breathe my way through the adrenalin rush I’m experiencing from resisting the urge to smack the living be-geesus out of her.
On the Pain Scale of 0-10.... Stupid is an 8, flirting with jail time.
At this point it seems pointless to continue to detail the medical issues of Stage Four Pancreatic Cancer, aka Neuroendocrine Cancer. Whatever. Allow me to clarify. There are three types of cancer.
Cancer YPWS... You Probably Will Survive. It's annoying, it's going to put a major hitch in your get-along, but you'll deal and move on and hopefully learn something about Life in the process. Your survival odds are totally and solely dependent on your willingness to cooperate and follow instructions. Your doctors will enthuse you with their confidence because they are just all over it and, well, please just don't screw it up.
Cancer SFS... Scaring Fucking Shit. Major battle that will really take a lot out of you, no guarantees but your will to survive will trump the cancer if you're totally committed, and you'll surface on the other side of the struggle as an advanced life form on the planet. Your doctors will appreciate a challenge beyond the day-to-day drudgery between the totally easy and the totally hopeless.
Cancer FUBAR... Yep...Fucked Up Beyond All Recognition.
You'll be lucky to find three people who believe in your fight, and chances are none of them will be a doctor. Pity will become quick sand; you will spend long periods of time suspended in mental/spiritual/physical hell, interspersed with brief moments of hope and joy that make you weep for the fear of their beauty. Reality will become relative and relatives will become exhausting. You will enter a dimension that few can comprehend, and those who could comprehend are probably dead. If you are blessed, and the stars are correctly aligned, and the tumblers of life fall into place...Your doctor will be inspired to embark on this journey with you because there is something so amazing and magickal about you that he/she moves forward with you for reasons they cannot comprehend.
Me...I've got Cancer FUBAR by Proxy. And this is gonna hurt like Hell. Because on a Pain scale of 0-10.... Stupid is 8.
Coming out of the anesthesia, Rich is increasingly disturbed by the pain and discomfort from his catheter. He is crying from the pain of not being able to pee. We explain there's a catheter; but we quickly realize the catheter is not draining. As it worsens, I begin to request the matter be addressed, with increasing urgency. Fifteen minutes from my initial request, Rich is writhing in pain. The surgery resident appears. Rich's nurse reports the situation in such a manner that I feel confident the matter will be addressed without delay. Another fifteen minutes of Rich's pain and suffering increasing and I'm becoming disturbed.
It seems the surgical resident wants a bladder scan to determine how to proceed. On hearing this, I'm ready to pull the can opener out of my pocket so as to open the Number Ten can of Whoop Ass. I'm trying to CALMLY explain to the resident that the man is writhing in pain and the foley is not draining any urine... so a). something is wrong with the foley and it needs to come out or b) something is wrong with the foley and it needs to come out. A bladder scan isn't going to mean jack shit... Pull the goddamn foley!!!!
(Please reference the scene in Terms of Endearment when Shirley McLaine was going ape-shit to get Debra Winger her pain meds.)
Luckily Bob Pyett was there to grab me by the scruff of the neck before I committed a Class A Felony. Yeah, it turns out there was a problem with the position of the foley causing blockage and once they removed it, he was peeing just fine.
The next day Rich was doing better and some friends were in to visit. In walks the Radiology Resident. Introduces herself and without asking the patient's permission to discuss his case in front of those present, she begins to rapid-fire announce radiology's plans for his treatment. They're going to fit him for a sling that will contort him into the correct position for optimal radiation. Every day Monday through Friday. Today is Thursday, they'll start Monday. By the third or fourth week he will experience loss of bowel control, possible loss of bladder control. This treatment will proceed for approximately 8 weeks and he will be given chemotherapy concurrently which can cause nausea and vomiting. Everything possible will be done to control your pain. Do you have any questions?
Yeah, my questions, in no particular order, are 1) HIPPA?, 2) common decency? 3) human compassion?
Verbally I pose the following... “His surgeon says nothing will happen until the 37 staples are removed from his abdomen. His surgeon and oncologist have outlined three different options, none of which we have decided upon thus far, and none of which include anything you've just mentioned. So my question is... are ya'll talking to each other? Because I'm thinking ya'll are not talking to each other.”
She stammered and stuttered and slithered away. I looked at my husband, who was in shock, I looked at our friends who were stunned and appalled, I tried to deep breathe my way through the adrenalin rush I’m experiencing from resisting the urge to smack the living be-geesus out of her.
On the Pain Scale of 0-10.... Stupid is an 8, flirting with jail time.
At this point it seems pointless to continue to detail the medical issues of Stage Four Pancreatic Cancer, aka Neuroendocrine Cancer. Whatever. Allow me to clarify. There are three types of cancer.
Cancer YPWS... You Probably Will Survive. It's annoying, it's going to put a major hitch in your get-along, but you'll deal and move on and hopefully learn something about Life in the process. Your survival odds are totally and solely dependent on your willingness to cooperate and follow instructions. Your doctors will enthuse you with their confidence because they are just all over it and, well, please just don't screw it up.
Cancer SFS... Scaring Fucking Shit. Major battle that will really take a lot out of you, no guarantees but your will to survive will trump the cancer if you're totally committed, and you'll surface on the other side of the struggle as an advanced life form on the planet. Your doctors will appreciate a challenge beyond the day-to-day drudgery between the totally easy and the totally hopeless.
Cancer FUBAR... Yep...Fucked Up Beyond All Recognition.
You'll be lucky to find three people who believe in your fight, and chances are none of them will be a doctor. Pity will become quick sand; you will spend long periods of time suspended in mental/spiritual/physical hell, interspersed with brief moments of hope and joy that make you weep for the fear of their beauty. Reality will become relative and relatives will become exhausting. You will enter a dimension that few can comprehend, and those who could comprehend are probably dead. If you are blessed, and the stars are correctly aligned, and the tumblers of life fall into place...Your doctor will be inspired to embark on this journey with you because there is something so amazing and magickal about you that he/she moves forward with you for reasons they cannot comprehend.
Me...I've got Cancer FUBAR by Proxy. And this is gonna hurt like Hell. Because on a Pain scale of 0-10.... Stupid is 8.
Sunday, August 1, 2010
I remember leaving the doctor's office. It was 2:14 pm. I don't know why that sticks in my mind. But for some insane reason I looked at my watch as we reached the van and I stopped, as always so that Richard could open my car door, and it was 2;14 pm and for some reason that hardwired in my brain. I thought to offer to drive and immediately realized that such an offer would be wrong on at least three different levels.
There was a long pause between the snap of two seat belts being securely fastened and the start of the engine. A long silent pause. There were no words for that patch of time. Somehow I knew that we were both trying to comprehend, digest and … breathe. I was thinking of him, knowing he was thinking of me
I was searching desperately for words that would comfort, and there were none. I'm Irish, so if there are words to be had, I WILL find them. Something in my heart knew that his first thoughts were of us as well. “How will we get through this, what will happen to her, this will be so very hard for her.”
I don't know what to say.
It would not be a long drive from the doctor's office back to home—fifteen minutes max. When the engine started I felt light-headed, and when the vehicle began to move I felt the sensation of entering a tight, glass tunnel. Like a transparent vacuum tube that was pulling me to my destination, and at the same time I was looking out the window at the end of winter, and the trees, the trees, the trees.... the sap must be rising, and what did that feel like for the trees? And holy shit I'm losing my mind. We reached for each others hand at the same moment, which was normal for us.
My first thought when we got home was that I had to call work and let them know I wouldn't be back in that day. I had worked through lunch so I could leave for this appointment—something I had never done before. I called the direct line of a co-worker, and when she answered I said in a clear voice “Katie, it's me. I'm not going to make it back there this afternoon.” She asked if everything was okay. I said “Rich has stage four pancreatic cancer.” I heard her gasp. I heard her say “oh my god”. It was like someone pulling the blanket away while sticking a pin in a balloon. I was instantly awake, alert and this was my new reality.
Next I called the surgeon who had removed the 22 lb tumor from my brother's abdomen the year before. “We just left the doctor's office,” I'm explaining to the pleasant woman on the phone, “and he has stage four pancreatic cancer and the doctor said we have to have a surgical consult before we can proceed...” We were given an appointment for the following morning. Wow... pancreatic cancer kicks ass. We were less than an hour into this and I had accomplished something. Rich was standing on the back patio looking out over our beautiful garden when I got off the phone. It was hard to know what to say to him. We stood there together, wrapped in each other's arms looking out at the end of winter and beginning of spring. The daffodils were barely up.
“Who's going to take care of my garden?” was all he said.
The next morning we saw the surgeon. Fifteen minutes that accomplished nothing other than providing an opportunity to bill the insurance company. How long does it take to explain it's inoperable? Eighty-five dollars. I felt we had just purchased a ticket for two to the Cancer Carnival. Little did I know how right I was.
It took me less than fifteen minutes to choose an oncologist. It helps to know people who know people. Less than 48 hours from diagnosis we were sitting in a small room filled with a round table and four chairs. We were sitting across from Dr McGee and he was explaining what we were facing as near as he could tell at this point. He was speaking in large, open statements like he knew exactly where Rich and I were mentally and emotionally; aware that details were more than we could digest.
There was a box of tissues on the table. I felt they had been strategically placed for me, like there was a note on the bottom of the test results “have tissues ready, spouse is a weeper.” Or as my father would say, “she's not a Cryer, but her eyes sure do leak”.
The diagnostic powers of CATscans are limited so the next step would be a liver biopsy. He was admitted immediately. They had to give him three bags of plasma and Vitamin K injections because he'd been on coumadin for atrial fibrillation, and because his liver was not functioning at full capacity, his INR was way too high—16.8. (therapeutic is 2.0 to 4.0)
They do his biopsy and that was a level of pain I've never witnessed before. They don't have pain meds in radiology so it was a really long commute from Floor one to his room on the fifth floor. After two pushes of morphine he's still delirious with pain, but 4 mg of dilaudid flick a switch and he's in fifth grade again and telling me about every single student in his class...name, address and general point of interest. CAT scan shows the liver hemorrhaged into the membrane surrounding the liver, hence the pain. He has the ghost of a mottled bruise on his right side.
The next day he's discharged. We wait for results. The results come back but they don't make any sense—not a direct quote, I'm paraphrasing. He comes home March 14th and on March 16th I'm calling Dr McGee because Rich is having difficulty eating due to pressure in his abdomen, his skin is itching terribly, he appears almost imperceptibly swollen and his skin is yellowing before my eyes like a ripening pumpkin. They direct us back to ER.
The difference between ER and a really exclusive nightclub is that ER has to let everyone in. Once admitted, however, ER is exactly like an exclusive night club—your treatment is directly related to the names you can drop. If you say “Dr McGee” and “pancreatic cancer” you are on the fast track to IV fluids, all the pain meds you desire, and not too long a wait for admission to a bed.
A GI doctor is called in and he places a stent in the common bile duct, which has been surrounded and squeezed by the main tumor in the pancreas. The stent will allow bile to flow from the gall bladder, and within 24 hours there is amazing improvement overall. But they still can't tell us what they're dealing with. More tests. I begin to suspect that tests are the crack cocaine of the medical profession.
So they run the tests, mostly the same tests again because they couldn't conclude anything from the first round of tests. Because the second round of tests are the same as the first, the results are also the same so imagine my surprise at their surprise that we still don't know what we're dealing with...exactly. So they add some new tests; a 24 hour urine test. And those results come back, and more results come back, and eventually we learn that this is not the typical Stage Four Pancreatic Cancer. This is neuroendocrine cancer. Somehow I sense that this is good news, but NO one is going to endanger their malpractice premiums by offering any measure of Hope. Upon my own research I learn that in the world of cancers, neuroendocrine is the hybrid of a Fox and an Owl. When was the last time you saw a fox or an owl in the wild, or even as road kill? See what I mean?
On the positive side, and I am always looking for the positive side... this is really, truly, fucking with their heads. It is the small measure of enjoyment I find for reasons I will explain later. Richard has now been asked 103 times if he is having any pain. Anywhere. 103 times he tells them “nope. No pain.” (With the exception of having his liver roto-rooted by a 16 gauge needle.) He has been grilled repeatedly on symptoms. No symptoms. We are both becoming weary of recounting the events that brought us to the doorstep of Western Medicine. Routine cholesterol check,→ elevated liver enzymes→ abdominal CAT scan→ diagnosis→ skin itching→abdominal bloating, In That Order, and here we are. It has become a mantra.
We go home. On March 30th he has an appointment with another surgeon. On April 6th they do another liver biopsy just in case the first two liver biopsies were …. wrong? Another opportunity to put the man through hell to obtain more cells from the SAME damn tumors? Lord, please don't let this be about BMW payments.
On May 6th they attempt a whipple. Rich is positive and amazingly hopeful of the outcome. Dr A prepares us for the procedure. If he can do what he hopes it will take 10-12 hours. If not, he'll be out in less than four hours. I sit in the surgical waiting area and knit. When my restaurant-style buzzer goes off in my lap I know it's way too soon and I try not to cry. Dr A takes us into a little room...the same little room they took us into after my brother's 22 lb tumor removal. Dr A explains the results. He was not able to dissect any of the tumor in the pancreas because it was intertwined with the main artery and vein, and he couldn't address the two in the liver because there were little tumors EVERYWHERE. He resected the common bile duct outside of the pancreas and closed him up. All I could think of is “how am I going to tell Rich?” Dr A assured me that as soon as Rich woke up he would know without being told.
He was in a regular room and I was with him when he woke up. The first thing he said to me was “they weren't able to get it, were they.” Thirty minutes later I am flirting with jail time...
There was a long pause between the snap of two seat belts being securely fastened and the start of the engine. A long silent pause. There were no words for that patch of time. Somehow I knew that we were both trying to comprehend, digest and … breathe. I was thinking of him, knowing he was thinking of me
I was searching desperately for words that would comfort, and there were none. I'm Irish, so if there are words to be had, I WILL find them. Something in my heart knew that his first thoughts were of us as well. “How will we get through this, what will happen to her, this will be so very hard for her.”
I don't know what to say.
It would not be a long drive from the doctor's office back to home—fifteen minutes max. When the engine started I felt light-headed, and when the vehicle began to move I felt the sensation of entering a tight, glass tunnel. Like a transparent vacuum tube that was pulling me to my destination, and at the same time I was looking out the window at the end of winter, and the trees, the trees, the trees.... the sap must be rising, and what did that feel like for the trees? And holy shit I'm losing my mind. We reached for each others hand at the same moment, which was normal for us.
My first thought when we got home was that I had to call work and let them know I wouldn't be back in that day. I had worked through lunch so I could leave for this appointment—something I had never done before. I called the direct line of a co-worker, and when she answered I said in a clear voice “Katie, it's me. I'm not going to make it back there this afternoon.” She asked if everything was okay. I said “Rich has stage four pancreatic cancer.” I heard her gasp. I heard her say “oh my god”. It was like someone pulling the blanket away while sticking a pin in a balloon. I was instantly awake, alert and this was my new reality.
Next I called the surgeon who had removed the 22 lb tumor from my brother's abdomen the year before. “We just left the doctor's office,” I'm explaining to the pleasant woman on the phone, “and he has stage four pancreatic cancer and the doctor said we have to have a surgical consult before we can proceed...” We were given an appointment for the following morning. Wow... pancreatic cancer kicks ass. We were less than an hour into this and I had accomplished something. Rich was standing on the back patio looking out over our beautiful garden when I got off the phone. It was hard to know what to say to him. We stood there together, wrapped in each other's arms looking out at the end of winter and beginning of spring. The daffodils were barely up.
“Who's going to take care of my garden?” was all he said.
The next morning we saw the surgeon. Fifteen minutes that accomplished nothing other than providing an opportunity to bill the insurance company. How long does it take to explain it's inoperable? Eighty-five dollars. I felt we had just purchased a ticket for two to the Cancer Carnival. Little did I know how right I was.
It took me less than fifteen minutes to choose an oncologist. It helps to know people who know people. Less than 48 hours from diagnosis we were sitting in a small room filled with a round table and four chairs. We were sitting across from Dr McGee and he was explaining what we were facing as near as he could tell at this point. He was speaking in large, open statements like he knew exactly where Rich and I were mentally and emotionally; aware that details were more than we could digest.
There was a box of tissues on the table. I felt they had been strategically placed for me, like there was a note on the bottom of the test results “have tissues ready, spouse is a weeper.” Or as my father would say, “she's not a Cryer, but her eyes sure do leak”.
The diagnostic powers of CATscans are limited so the next step would be a liver biopsy. He was admitted immediately. They had to give him three bags of plasma and Vitamin K injections because he'd been on coumadin for atrial fibrillation, and because his liver was not functioning at full capacity, his INR was way too high—16.8. (therapeutic is 2.0 to 4.0)
They do his biopsy and that was a level of pain I've never witnessed before. They don't have pain meds in radiology so it was a really long commute from Floor one to his room on the fifth floor. After two pushes of morphine he's still delirious with pain, but 4 mg of dilaudid flick a switch and he's in fifth grade again and telling me about every single student in his class...name, address and general point of interest. CAT scan shows the liver hemorrhaged into the membrane surrounding the liver, hence the pain. He has the ghost of a mottled bruise on his right side.
The next day he's discharged. We wait for results. The results come back but they don't make any sense—not a direct quote, I'm paraphrasing. He comes home March 14th and on March 16th I'm calling Dr McGee because Rich is having difficulty eating due to pressure in his abdomen, his skin is itching terribly, he appears almost imperceptibly swollen and his skin is yellowing before my eyes like a ripening pumpkin. They direct us back to ER.
The difference between ER and a really exclusive nightclub is that ER has to let everyone in. Once admitted, however, ER is exactly like an exclusive night club—your treatment is directly related to the names you can drop. If you say “Dr McGee” and “pancreatic cancer” you are on the fast track to IV fluids, all the pain meds you desire, and not too long a wait for admission to a bed.
A GI doctor is called in and he places a stent in the common bile duct, which has been surrounded and squeezed by the main tumor in the pancreas. The stent will allow bile to flow from the gall bladder, and within 24 hours there is amazing improvement overall. But they still can't tell us what they're dealing with. More tests. I begin to suspect that tests are the crack cocaine of the medical profession.
So they run the tests, mostly the same tests again because they couldn't conclude anything from the first round of tests. Because the second round of tests are the same as the first, the results are also the same so imagine my surprise at their surprise that we still don't know what we're dealing with...exactly. So they add some new tests; a 24 hour urine test. And those results come back, and more results come back, and eventually we learn that this is not the typical Stage Four Pancreatic Cancer. This is neuroendocrine cancer. Somehow I sense that this is good news, but NO one is going to endanger their malpractice premiums by offering any measure of Hope. Upon my own research I learn that in the world of cancers, neuroendocrine is the hybrid of a Fox and an Owl. When was the last time you saw a fox or an owl in the wild, or even as road kill? See what I mean?
On the positive side, and I am always looking for the positive side... this is really, truly, fucking with their heads. It is the small measure of enjoyment I find for reasons I will explain later. Richard has now been asked 103 times if he is having any pain. Anywhere. 103 times he tells them “nope. No pain.” (With the exception of having his liver roto-rooted by a 16 gauge needle.) He has been grilled repeatedly on symptoms. No symptoms. We are both becoming weary of recounting the events that brought us to the doorstep of Western Medicine. Routine cholesterol check,→ elevated liver enzymes→ abdominal CAT scan→ diagnosis→ skin itching→abdominal bloating, In That Order, and here we are. It has become a mantra.
We go home. On March 30th he has an appointment with another surgeon. On April 6th they do another liver biopsy just in case the first two liver biopsies were …. wrong? Another opportunity to put the man through hell to obtain more cells from the SAME damn tumors? Lord, please don't let this be about BMW payments.
On May 6th they attempt a whipple. Rich is positive and amazingly hopeful of the outcome. Dr A prepares us for the procedure. If he can do what he hopes it will take 10-12 hours. If not, he'll be out in less than four hours. I sit in the surgical waiting area and knit. When my restaurant-style buzzer goes off in my lap I know it's way too soon and I try not to cry. Dr A takes us into a little room...the same little room they took us into after my brother's 22 lb tumor removal. Dr A explains the results. He was not able to dissect any of the tumor in the pancreas because it was intertwined with the main artery and vein, and he couldn't address the two in the liver because there were little tumors EVERYWHERE. He resected the common bile duct outside of the pancreas and closed him up. All I could think of is “how am I going to tell Rich?” Dr A assured me that as soon as Rich woke up he would know without being told.
He was in a regular room and I was with him when he woke up. The first thing he said to me was “they weren't able to get it, were they.” Thirty minutes later I am flirting with jail time...
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