Sour Grapes
Time out. I'm calling time out and throwing a penalty flag. Too many men on the field. So far, I've been advised about my treatment plans by a male surgeon, a male interventional radiologist, and a male oncologist at Kasier. Now we've thrown into the mix another surgeon and oncologist from the University of Colorado Hospital. Both male. Where are the women in this mix?!?!
My team and I are regrouping after being handed a bit of a shock from the doctors at University of Colorado Hospital. A good shock, don't panic, but a shock none the less. I think it's time for me to reassert myself as the official in this game.
And what a game it is.
After extensive anxiety and hesitation about the Whipple procedure, I was strongly convinced by my surgeon at Kaiser it is the best course. We Could Go All The Way!!! Win the championship and take home a shiny trophy. If it were up to him, I'd already be cut up and recovering as he wanted to schedule my surgery for mid-October. The single appealing aspect of this is my reunification with my beloved Morphine Pump (see Through the Grapevine for explanation.) Wait, I lied, there are two appealing aspects, I would also be minus one pancreatic tumor, a foggy daydream at this juncture. I abandoned my "the Whipple removes so much of my insides, redirects my digestive system, requires a long recovery and renders me diabetic.... ALL of which can't be undone and I'm only 32" path at the paradoxical fork in the road. I took up course on the "I'm SO strong and this will be SO HARD but I can do it, I can do ANYTHING! No Katy Perry, you hear ME roar!" trail. Full speed ahead.
Whistle blows. The referee waves his arms. The previous play is under review.
I want a second opinion. What we heard at the University of Colorado Hospital was what I've wanted to hear ALL ALONG. It was a strategy right from my own playbook. As I said, I am not a fan of the Whipple, so hearing what we did was good..... HOWEVER, I could barely see straight enough to listen to anything.
A team of doctors with different specialties reviewed my case. This pack included a surgeon, oncologists , ect. The surgeon lost me straightaway when, milliseconds after entering the room, he asked, "What is this?" and gestured to the iPad I set up to record our conversation. How dare you vilify one of my Apple products. And who doesn't know what an iPad is?
"An iPad," I replied in a tone dripping with its own disdain and a chalk full of scorn. I knew what was to follow....
"Please turn it off. It alters the tone of our conversation." While stopping the recording, I turned to my sister and mouthed, "Pissed!" Who are you to tell me I can't record a conversation about my body! Since I was caught off guard, I couldn't think coherently enough to get my way or just leave the damn thing on. I understand you don't want to be sued but what would you say differently while being recorded? Makes me wonder.
The doctor's misfortune continued when he commenced his spiel. Although I was perched atop the thin layer of paper adorning the patient's table, he began to address my mom. He told her they have reviewed her scans and labs, a panel of doctors have come to a consensus about treatment options, but first, we'd like to hear about her symptoms, what first made her think something was wrong? My mother motioned to the actual (crossed-armed, visibly furious) patient, yours truly, and explained coolly she doesn't have cancer.
Allow me to digress:
Sooooooooo, sir.......... when you and this alleged panel of alleged doctors were allegedly reviewing my scans and all other things medical.... it never came up that I'm 32 years old? From what I've heard, cancer treatment varies quite a bit depending on the patient's age and several other factors, so age would/should be discussed. How did you just walk into a room and not know who is the patient? I markedly look 32. In fact someone just the other day said I look 25! So there! (I had to throw that in my rant.) Did you get high at lunch? YOU ARE TALKING ABOUT MY LIFE! L-I-F-E. Here's a little idea. I came up with it right off the top of my head: get the patient's name before you walk in their room, introduce yourself to the humans in the room, make a match between human and name. Mind-blowing, I know.
As I sat atop my paper covered perch, shaking from distress and desperately trying to make my notes legible, we learn of a magical chemo pill used specifically in cases like mine to shrink the tumors. WHAT?!?!?! I was diagnosed in May, it's now October and this is the first I'm hearing of this? Excuse me for being more than a little exasperated.
If we were to do the Whipple operation to resect the pancreatic tumor, all treatment of the tumors in the liver would halt during recovery. Most of the tumors in the liver treated during the chemo embolizations have responded (yay!) but there are still some residual tumors. It could be very dangerous if these tumors were to grow or spread. This chemo pill will target the spread and growth. So very technical of me to call it a chemo pill, yes? Guess I don't have that medical degree just yet... but I'm close.
Something told me I needed to talk to someone else. I listened and earned my spot in the Hall of Fame for it! Even though I was not incredibly happy with who I talked to, I heard the opposite of what the Kaiser surgeon was telling me. I knew there was something wrong with the Whipple surgery. I'm not in the end zone just yet. Not even near the 50-yard line. There is still a surgery in the mix. Truthfully, the Whipple is still a possibility. The hope is after the magic beans do their tricks, my pancreatic tumor will be cut out along with my spleen. Sorry Spleeny, I don't know who you pissed off but I guess your karma is on the same playing field as mine.
Another point of contention came up when we were told part of my pancreas could be saved. The people at UC Hospital say the head of the pancreas could be saved. The body, where the tumor is located, would be removed along with the tail which is basically atrophied at this point. The surgeon at Kaiser says the tail might be saved, if any of my pancreas can be salvaged.
These statements do not match.
My head is spinning.
Upon completing some research on the chemo drugs in question, I have VERY strong doubts. Until I hear from a credible, neuorendrocrine specialist, I have several reasons to abstain. I know my cancer is very rare but there has to be a neuroendocrine specialist somewhere..... I'm just like Fievel, wearing tattered clothing and singing to the moon, "Somewhere out there...."
First, according to the drug's very own website, only 9% of people experienced any shrinkage (why does this word make me giggle?). Clearly I'm not a mathematician. I couldn't even spell mathematician. If I were to make wild guess, 9% isn't very high.....? This chemo pill sounds fine and dandy when the doctors are pitching it, but, upon reflection, that's exactly what it felt like: a sales pitch. Who is in the background telling the doctors to tell me? What's in it for them? Excuse me for sounding like a conspiracy theorist. Did I mention this medication just so happens to be around $3,000 a month? Plus, there are extreme risks associated with it. So, it begs the question: who benefits from this pill? It certainly doesn't seem like it would be ME.
So here goes.....
Sutent ("the chemo pill") metabolizes in the liver. The first of many intense side-effects being damage to the liver. There is a huge risk to the liver and it says so several times on the drug's website.* According to my latest blood tests taken on October 2nd, my liver is showing signs of damage. This is the first time my blood tests have come back abnormal, meaning my liver is being impacted by the chemo embolizations. Results from the Oct 2nd blood tests show my alkaline phosphatase levels to be 182. The normal range is 28-111. My ATL (76) and AST (67) levels were also high. These tests determine liver damage and high numbers indicate damage. If you peruse through the drug's website, it warns of the liver damage (and death) several times.
I'm of the opinion more damage should NOT be done to my liver. Shrug, shrug, eyebrows raised. I can apparently live and function without a pancreas, but replacing my liver would be much more harrowing. According to UCH, a live-doner transplant is off the table and it's not promising to be on the transplant wait list. As much as possible, focus should be on keeping my current liver as healthy as possible.
The side effect inventory continues. It includes issues with heart function. I've been down this road before, my heart has already undergone a procedure to "fix" it. I found this on the Mayo clinic's web-site, (see the 6th and 7th paragraph-- and all the paragraphs): heart side effects. As with my liver, I'm going to advocate for my heart. She has been through quite enough and doesn't need a chemo pill, with a measly 9% chance of shrinking my pancreatic tumor, messing her up again. Plus, I kind of need a heart for, you know, living. I also noticed on the side-effect list "can cause liver problems" is immediately followed by "including death."
Liver risks=scary
Heart risks=scarier
Death risks=scariest
Cancer, you have me an impasse. I don't know what to do. I'm sure I'll figure it out but right now, I'm stumped.
Cancer 1, Lindsey 0
*Reminder: while you read on the websites linked above or any website, keep in mind my cancer is pancreatic NET (neuroendocrine tumor.)
This post is dedicated to my mom, Jennifer Drahota. Mom, you could easily pass for someone much younger! Please don't misconstrue my anger at this man who walked into my appointment and started talking to you as though you are the 32-year-old patient as anything but a human who made a mistake with the wrong Cancer who can't let it go. You have been really wonderful during all of this. I can't imagine doing any of it without you taking care of me, your little girl, as you always have.
Busy Bee
My to-do list:
1. Buy a walker now that I'm 90 years old.
By no means do I intend to offend any person advanced in age. In contrast, I'm quite jealous and applaud your strength. Congratulations on achieving old age. Our commonalities are not things most people my age find routine. Like, for example, walking slowly or riding the elevator. Eating like a bird and doing so around 4:00. Going to bed around 8 o'clock. Or even 7.... alright, alright, OR even earlier sometimes. The time we arise is probably comparable as well if you're getting up before the sun... and your alarm. Oh, you don't have to set an alarm since you're retired? Retirement. Here is something we do not share, much to my dismay. How lovely to attend appointments by the thousands, face treatment after treatment, sleep when exhausted, and rest when in pain without the constant anguish of using sick days. How does one get money without having to work?
2. Figure out how to get money without having to work.
3. Buy tennis balls for my walker.
4. Invent a new word for thank you.
At the risk of sounding redundant, I have a lot of people to thank. However, I lack adequate means to accomplish this task. "Thank you." Ack- boring. It's Marty McFly's fading image in the photograph he carries in Back to the Future. I'm over it. I need a shiny, new method of showing my gratitude!
A Turkish proverb states: thorns and roses grow on the same bush. This is the most accurate reflection of my current situation. One of my bright, cheery roses is a slimmer body in a size I haven't been since before middle school! I'm definitely not bragging. I'd much rather be my usual shape and healthy... but it's freaking fantastic to buy jeans in the same size as your girlfriend who you look at thinking, "Dang she's skinny." Another colorful rose is remaining healthy looking and keeping my hair. I'm incredibly grateful for this. I sound shallow and frivolous but having no control over the happenings in your body where cancerous cells are rapidly dividing and obliterating your internal organs will do this to you. I'm very often in pain or feeling discomfort so at least I can look well on the outside. Finally, the colossal, exceptionally fragrant rose is the uncommon opportunity to find out how many people in this world love you. Truly, I don't think people stop to realize how much love surrounds them at all times. Presently, I know. And I'm thankful. __(insert new word here)__ for the cards, love, hugs, prayers, thoughts, care packages, love, chats, presents, prayer quilts, love, blog-reading, flowers, smiles, and love.
5. Create zillions of cards with my new word for thank you.
Become a zillionaire. Cross off #2.
6. Blunder into a cartoon-like situation where the zany, scientific character creates a way to enhance brain power thereby giving me the capacity to make life-altering decisions with ease.
I'm Gollum-like obsessed with the few remaining brain cells I posses. My precious lone troopers and I are faced with some pretty harrowing decisions. It's taken some time, major convincing AND a trip to meet with the "experts in their fields" at the University of Colorado hospital (one of the best hospitals in the nation has apparently just been sitting right under my nose this whole time.) but I'm going to go ahead with surgery. I had hoped to be referred to Mayo or John's Hopkins. No, I'll simply drive to Aurora, a Denver suburb not exactly known for its aesthetics and tolerance, a trip typically only reserved for passage to the airport. During my consolation, the leading expert in all things pancreas Dr. _______ (I forgot his name), several other doctors and my surgeon, Dr. Weinfeld, will form a panel and review my case. Since I have a wildly rare cancer, it's good to hear what everyone has to say on the matter. The process will last the entire day so I shall don a tiara and sash reading, "Queen for the Day" and assume everyone is at my whim.
The surgery in discussion will considerably alter my life. Surprise! Maybe at this point I should just be used to having life-altering news flashed in my face. My surgeon doesn't think there will be enough of my pancreas to salvage. If there is, it won't be much and not enough for it to operate at normal capacity. I was reverently assured you can live without a pancreas, a large hurdle for me to leap as I was convinced of the opposite. Following this extraction, I'll be rendered diabetic. A diabetic is a person with a pancreas that doesn't function or functions poorly. I'll be a person without a pancreas that doesn't function. After my pancreas checks out, I'll take over its job of providing the digestive process with insulin and enzymes. I'm already taking enzymes every time I eat so this won't be new. I had hoped to discontinue this practice post-cancer but I guess I'll just find new love for my little enzyme friends. The insulin thing will be all new to me.
7. Tackle insulin obstacle when I get there.
The surgery is tentatively being placed sometime at the beginning of November. Dr. Weinfeld, who just recently started sporting a goatee, and I will be in the operating room for 8+ hours. I assume he'll head home after this to watch football and eat wings on the couch while I hang at the hospital for awhile. More to come on this as I don't know the all the details of what happens after surgery, for Weinfeld or myself. Maybe instead of wings he'll have popcorn and watch the Voice. Perhaps it will be a sandwich and a John Hughes movie. I just won't know until I can investigate further.
8. Check into Weinfeld's post-survey routine.
First up is the panel at University hospital, then figuring out time off of work, then surgery. Baby steps. Just like Bob.
This post is dedicated to Joseph Davis. He lost his mother to cancer yesterday. I write a lot of words about myself and yet I have none to give him. In the absence of the right words, I offer these. Jos, I love you. I haven't stopped thinking about you since you gave me the news earlier today. And I will not stop thinking of you. Betsy put it best when she said you have an ability to handle things in a higher way than we do. You do.
1. Buy a walker now that I'm 90 years old.
By no means do I intend to offend any person advanced in age. In contrast, I'm quite jealous and applaud your strength. Congratulations on achieving old age. Our commonalities are not things most people my age find routine. Like, for example, walking slowly or riding the elevator. Eating like a bird and doing so around 4:00. Going to bed around 8 o'clock. Or even 7.... alright, alright, OR even earlier sometimes. The time we arise is probably comparable as well if you're getting up before the sun... and your alarm. Oh, you don't have to set an alarm since you're retired? Retirement. Here is something we do not share, much to my dismay. How lovely to attend appointments by the thousands, face treatment after treatment, sleep when exhausted, and rest when in pain without the constant anguish of using sick days. How does one get money without having to work?
2. Figure out how to get money without having to work.
3. Buy tennis balls for my walker.
4. Invent a new word for thank you.
At the risk of sounding redundant, I have a lot of people to thank. However, I lack adequate means to accomplish this task. "Thank you." Ack- boring. It's Marty McFly's fading image in the photograph he carries in Back to the Future. I'm over it. I need a shiny, new method of showing my gratitude!
A Turkish proverb states: thorns and roses grow on the same bush. This is the most accurate reflection of my current situation. One of my bright, cheery roses is a slimmer body in a size I haven't been since before middle school! I'm definitely not bragging. I'd much rather be my usual shape and healthy... but it's freaking fantastic to buy jeans in the same size as your girlfriend who you look at thinking, "Dang she's skinny." Another colorful rose is remaining healthy looking and keeping my hair. I'm incredibly grateful for this. I sound shallow and frivolous but having no control over the happenings in your body where cancerous cells are rapidly dividing and obliterating your internal organs will do this to you. I'm very often in pain or feeling discomfort so at least I can look well on the outside. Finally, the colossal, exceptionally fragrant rose is the uncommon opportunity to find out how many people in this world love you. Truly, I don't think people stop to realize how much love surrounds them at all times. Presently, I know. And I'm thankful. __(insert new word here)__ for the cards, love, hugs, prayers, thoughts, care packages, love, chats, presents, prayer quilts, love, blog-reading, flowers, smiles, and love.
5. Create zillions of cards with my new word for thank you.
Become a zillionaire. Cross off #2.
6. Blunder into a cartoon-like situation where the zany, scientific character creates a way to enhance brain power thereby giving me the capacity to make life-altering decisions with ease.
I'm Gollum-like obsessed with the few remaining brain cells I posses. My precious lone troopers and I are faced with some pretty harrowing decisions. It's taken some time, major convincing AND a trip to meet with the "experts in their fields" at the University of Colorado hospital (one of the best hospitals in the nation has apparently just been sitting right under my nose this whole time.) but I'm going to go ahead with surgery. I had hoped to be referred to Mayo or John's Hopkins. No, I'll simply drive to Aurora, a Denver suburb not exactly known for its aesthetics and tolerance, a trip typically only reserved for passage to the airport. During my consolation, the leading expert in all things pancreas Dr. _______ (I forgot his name), several other doctors and my surgeon, Dr. Weinfeld, will form a panel and review my case. Since I have a wildly rare cancer, it's good to hear what everyone has to say on the matter. The process will last the entire day so I shall don a tiara and sash reading, "Queen for the Day" and assume everyone is at my whim.
The surgery in discussion will considerably alter my life. Surprise! Maybe at this point I should just be used to having life-altering news flashed in my face. My surgeon doesn't think there will be enough of my pancreas to salvage. If there is, it won't be much and not enough for it to operate at normal capacity. I was reverently assured you can live without a pancreas, a large hurdle for me to leap as I was convinced of the opposite. Following this extraction, I'll be rendered diabetic. A diabetic is a person with a pancreas that doesn't function or functions poorly. I'll be a person without a pancreas that doesn't function. After my pancreas checks out, I'll take over its job of providing the digestive process with insulin and enzymes. I'm already taking enzymes every time I eat so this won't be new. I had hoped to discontinue this practice post-cancer but I guess I'll just find new love for my little enzyme friends. The insulin thing will be all new to me.
7. Tackle insulin obstacle when I get there.
The surgery is tentatively being placed sometime at the beginning of November. Dr. Weinfeld, who just recently started sporting a goatee, and I will be in the operating room for 8+ hours. I assume he'll head home after this to watch football and eat wings on the couch while I hang at the hospital for awhile. More to come on this as I don't know the all the details of what happens after surgery, for Weinfeld or myself. Maybe instead of wings he'll have popcorn and watch the Voice. Perhaps it will be a sandwich and a John Hughes movie. I just won't know until I can investigate further.
8. Check into Weinfeld's post-survey routine.
First up is the panel at University hospital, then figuring out time off of work, then surgery. Baby steps. Just like Bob.
This post is dedicated to Joseph Davis. He lost his mother to cancer yesterday. I write a lot of words about myself and yet I have none to give him. In the absence of the right words, I offer these. Jos, I love you. I haven't stopped thinking about you since you gave me the news earlier today. And I will not stop thinking of you. Betsy put it best when she said you have an ability to handle things in a higher way than we do. You do.
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