I have slippery veins, and yes this is a real thing. I wasn't even aware I had them until I had a horrible surfing accident which opened up an artery under my left arm. One of my IV's needed replacing and this wonderful nurse who was massaging my arm, looking for a likely culprit said, "Ohh.... you have slippery veins, don't you?" I wasn't sure what that meant,, but I did know that I hated giving blood, or getting an IV.
You see, having slippery veins is not that big of a deal, as long as you tell the nurse beforehand. Otherwise they might be on try number 2 or 3 and you're turning white and faint before someone figures out what's going on. I really don't mind getting poked, it's just that after three tries my arm and my brain are ready to run away to a far away Caribbean island, where the sharpest thing is a coconut.
IV's are the hardest because that catheter they're trying to stick inside a vein is a fat little bitch and if you don't get it just right.... try again. I'm at the point now where I can tell if it's a successful poke or not right from the get go because it's like a quickie - fast but awesome. If it's a fail, there's always some digging around a bit before the nurse will admit defeat. And trust me on this one - nurses hate failing just as much as you feel it because it hurts like a god damn son of a bitch sometimes.
Today was like that and I thought the nurse was going to cry for a second because she knew (the always know) that her digging was causing me a shitload of pain. Just the way it is when you have cancer and get as many IVs as I do :-(
But there is something you can do if you have veins that play hard-to-get, and that is... drink water. Drink a TON of water before you have to give blood or get and IV. It will increase the volume of liquid in your veins and make the nurses jobs much, much easier. And speaking of nurses, my favs are the pediatric nurses because they have a ton of experience with teeny tiny little baby veins and could stick ladybug with an IV.
So, today was number 16. My 16th infusion of pembrolizumab. 48 weeks of cancer therapy. 48 weeks of starting all over again. 48 weeks of wondering what lays over that next rise, and the next one, and the next one, and the....
I think I'm just going to go for it and just not really give a damn about so much - just let my instinct take over permanently so my senses can overload on anything and everything.
Tonight, it's ice cream, and the keyboard.
Tomorrow it will be my new Honda lawnmower, and a beer.
This is The Day
Readjustment. That's the best word I can think of to explain how I feel every day, these days. I've gone from so many highs and lows and ups and downs it's a wonder I can still find the kitchen in the morning - but thank God I can, and do because I make a damn fine cup of coffee. But right now I have to readjust to the fact that even though my latest PET/CT scans show practically nothing - nada - there will never be any guarantees that my cancer won't come raging back someday soon, or someday later.
This is almost a maddening thing to be at peace with. I so want to just let it all be and live each day indulging and working and playing and everything, but that quiet little bitch will never go away and silently reminds me - every day - that she's still here, with me, and refuses to ever really and completely go away. This is so royally fucked. So what I didn't expect, although when you have stage 4 cancer you just always expect the worse, naturally.
I was well, got stage 4 cancer, went to UCSF, got some meds, am just about NED, and now feel like I'm back to being well but waiting for stage 4 to happen all over again. And people keep asking me "How I can stay so positive etc etc etc..." well I'm not really I just don't choose to let myself get run over by that big ass bus that keeps rounding every corner I take. I really am not doing well, but in a way I am doing really well - better than most - yet you must also understand that god damn little bitch still won't shut the fuck up, or go away, or.....
Peace just won't come to you, you really must carefully seek it out. I find it in my morning shaves, while using a razor that was new in 1932, and lather a shaving cream using a boar bristle brush, while finishing up with an aftershave my dad used to use. I also find while making a hot cup of coffee each morning, with whole beans I grind by hand and brew using one of two pour-over methods or a French press. I can also find peace at the golf course, at the driving range or on the putting green, relentlessly pursuing the perfect shot, or the perfect putt, or even the perfect round. There is also peace when I mow the lawn and pull the weeds and prune the trees and pick the blueberries and raspberries and even when I wash the dishes.
I also find a little peace when I write, too. Not much as writing is just fuel for every fire there is, but in an organized and compartmentalized way, writing feels like learning and moving and finding - all things that surprise and soothe me/us. So if you do read this and then you do see me, I hope you will see me differently now because everything is different and it always will be, and that's really ok.
This is almost a maddening thing to be at peace with. I so want to just let it all be and live each day indulging and working and playing and everything, but that quiet little bitch will never go away and silently reminds me - every day - that she's still here, with me, and refuses to ever really and completely go away. This is so royally fucked. So what I didn't expect, although when you have stage 4 cancer you just always expect the worse, naturally.
I was well, got stage 4 cancer, went to UCSF, got some meds, am just about NED, and now feel like I'm back to being well but waiting for stage 4 to happen all over again. And people keep asking me "How I can stay so positive etc etc etc..." well I'm not really I just don't choose to let myself get run over by that big ass bus that keeps rounding every corner I take. I really am not doing well, but in a way I am doing really well - better than most - yet you must also understand that god damn little bitch still won't shut the fuck up, or go away, or.....
Peace just won't come to you, you really must carefully seek it out. I find it in my morning shaves, while using a razor that was new in 1932, and lather a shaving cream using a boar bristle brush, while finishing up with an aftershave my dad used to use. I also find while making a hot cup of coffee each morning, with whole beans I grind by hand and brew using one of two pour-over methods or a French press. I can also find peace at the golf course, at the driving range or on the putting green, relentlessly pursuing the perfect shot, or the perfect putt, or even the perfect round. There is also peace when I mow the lawn and pull the weeds and prune the trees and pick the blueberries and raspberries and even when I wash the dishes.
I also find a little peace when I write, too. Not much as writing is just fuel for every fire there is, but in an organized and compartmentalized way, writing feels like learning and moving and finding - all things that surprise and soothe me/us. So if you do read this and then you do see me, I hope you will see me differently now because everything is different and it always will be, and that's really ok.
The Elephant in the Room
I'm not very fond of those lingering questions that just sit there and don't go anywhere. And if I do go looking for answers, I only end up with more questions, so it's better to just let the elephant in the room be.
Having cancer is a bitch. Having Stage 4 cancer is a real bitch, and having metastatic Stage 4 Melanoma is the Queen of all bitches, and it truly feels like she's never going to leave. Yes, my immunotherapy is working wonders, shrinking my tumors to practically nothing. No hot spots, no ugly growths and no new growth at all. In fact, I'm expected to go NED (no evidence of disease) before too long. Yet this does nothing to quiet my mind and all of the lingering fears because once you go Stage 4 Melanoma does it ever really all go away?
Because the immunotherapy I'm on is so new, there's no long-term data on, well, anything. It's all a big we don't know right now which really hurts because I know all too well just how god damn sneaky and nasty Melanoma can be because it hid out in my small intestine for 20 years without any symptoms to let me know that it was even there - bitch. So what the hell am I supposed to think? Do? Feel? Say? Write?
I'm just now realizing I'm in this for good. No where else to go. I surmise that the word cancer pops up in my thoughts/words/ideas/thinkings about every 10 seconds - no matter what the hell I do. It's always there it's always hanging out with me and it always has the last word. You may think that exercise and meditation and sports and golf and the ocean and the tangle of a child's hair would make this not so. But the damned truth is it is here to stay with me - every 10 seconds - no matter what.
This makes me so very, very sad - looking at that elephant in the room - with no words to say or no actions to have - just me and it - quietly waiting, and wondering, and praying.
Having cancer is a bitch. Having Stage 4 cancer is a real bitch, and having metastatic Stage 4 Melanoma is the Queen of all bitches, and it truly feels like she's never going to leave. Yes, my immunotherapy is working wonders, shrinking my tumors to practically nothing. No hot spots, no ugly growths and no new growth at all. In fact, I'm expected to go NED (no evidence of disease) before too long. Yet this does nothing to quiet my mind and all of the lingering fears because once you go Stage 4 Melanoma does it ever really all go away?
Because the immunotherapy I'm on is so new, there's no long-term data on, well, anything. It's all a big we don't know right now which really hurts because I know all too well just how god damn sneaky and nasty Melanoma can be because it hid out in my small intestine for 20 years without any symptoms to let me know that it was even there - bitch. So what the hell am I supposed to think? Do? Feel? Say? Write?
I'm just now realizing I'm in this for good. No where else to go. I surmise that the word cancer pops up in my thoughts/words/ideas/thinkings about every 10 seconds - no matter what the hell I do. It's always there it's always hanging out with me and it always has the last word. You may think that exercise and meditation and sports and golf and the ocean and the tangle of a child's hair would make this not so. But the damned truth is it is here to stay with me - every 10 seconds - no matter what.
This makes me so very, very sad - looking at that elephant in the room - with no words to say or no actions to have - just me and it - quietly waiting, and wondering, and praying.
How I Pee
I pee a lot, because I drink a lot - of water. Besides being a healthy thing to do, oncologists strongly recommend that cancer patients on chemo or immunotherapy stay as hydrated as possible as this will help protect vital organs and tissues from some of the harmful affects of certain drugs. Keeping this medically sound recommendation firmly in mind, I would like to share my system for drinking, and peeing.
I have three 750ml water bottles that I fill each each night before going to bed. One goes upstairs with me and sits on the nightstand next to my bed, but gets refilled the next morning. The daily plan is to drink all three 750ml bottles before refilling them each night. In case you weren't keeping track, thats 4 times 750ml which equals 3000ml, or 3 liters, or .83 gallons, or 3.17 quarts, or 13.2 cups, or 6.34 pints, or you get the idea.
Let me put this another way - in 2013 the average American person drank only 7,242 ounces (or 58 gallons) of water annually - that's only 20 ounces or 2.5 cups daily. On the one year anniversary of my 1st infusion I'll have drank 1,095 liters of water, or 289 gallons, or 4,628 cups in one year. But according to the National Institute of Medicine and the Mayo Clinic, I'm actually getting what is considered to be the adequate intake (AI) of water each day - 3 liters for men (2.2 liters for women). I wonder if this means that I need to push things up to 4 liters a day?
Which brings us logically to the next phase - peeing. According to the U.S. National Institute of Diabetes and Digestive and Kidney Diseases, adults typically produce about 1½ quarts (about 1.4 liters) of urine daily. However, this amount can range greatly, from just under a quart to half a gallon (800 milliliters to 2 liters) daily. I'm pretty sure I've got this and in spades because there's pretty much not a piece of acreage that I haven't peed on in my humble little town of Alameda, and in Oakland and Berkeley and of course in San Francisco.
My favorite place to pee, of course is at home, when I'm alone and guaranteed a quick access to the bowl. My next favorite place to pee is pretty much any where outside, with my backyard and the golf course tying for an easy second place. There's nothing finer than leaving your mark wherever you need to when you're drinking 3 liters of water everyday, and boy do I. After my outside pees, things get a little more complicated as I may be running errands or driving or not near one of my 1st or 2nd peeing choices, which of course is very uncomfortable sometimes. Not to worry - I've pretty much mapped out all of the appropriate public bowls that I might need on any given day.
And yes, after writing this down into my blog, I have to pee.... how about you?
I have three 750ml water bottles that I fill each each night before going to bed. One goes upstairs with me and sits on the nightstand next to my bed, but gets refilled the next morning. The daily plan is to drink all three 750ml bottles before refilling them each night. In case you weren't keeping track, thats 4 times 750ml which equals 3000ml, or 3 liters, or .83 gallons, or 3.17 quarts, or 13.2 cups, or 6.34 pints, or you get the idea.
Let me put this another way - in 2013 the average American person drank only 7,242 ounces (or 58 gallons) of water annually - that's only 20 ounces or 2.5 cups daily. On the one year anniversary of my 1st infusion I'll have drank 1,095 liters of water, or 289 gallons, or 4,628 cups in one year. But according to the National Institute of Medicine and the Mayo Clinic, I'm actually getting what is considered to be the adequate intake (AI) of water each day - 3 liters for men (2.2 liters for women). I wonder if this means that I need to push things up to 4 liters a day?
Which brings us logically to the next phase - peeing. According to the U.S. National Institute of Diabetes and Digestive and Kidney Diseases, adults typically produce about 1½ quarts (about 1.4 liters) of urine daily. However, this amount can range greatly, from just under a quart to half a gallon (800 milliliters to 2 liters) daily. I'm pretty sure I've got this and in spades because there's pretty much not a piece of acreage that I haven't peed on in my humble little town of Alameda, and in Oakland and Berkeley and of course in San Francisco.
My favorite place to pee, of course is at home, when I'm alone and guaranteed a quick access to the bowl. My next favorite place to pee is pretty much any where outside, with my backyard and the golf course tying for an easy second place. There's nothing finer than leaving your mark wherever you need to when you're drinking 3 liters of water everyday, and boy do I. After my outside pees, things get a little more complicated as I may be running errands or driving or not near one of my 1st or 2nd peeing choices, which of course is very uncomfortable sometimes. Not to worry - I've pretty much mapped out all of the appropriate public bowls that I might need on any given day.
And yes, after writing this down into my blog, I have to pee.... how about you?
One Year
Early morning on February 7, 2014 I woke from my sleep to pee. As I walked to the bathroom I had to put my hand out on the bed to steady myself - I was dizzy. When I got to the bathroom I realized that I had to poo, but it felt strange like I'd eaten something very wrong. I flipped on the light to check on things and Jesus - that's a lot of blood - the red kind and the dark kind, and there was that very unique mineral smell, too. That was on a Friday.... on Sunday I was admitted into the emergency room where a blood test showed I'd lost over half my blood.
Then on Valentine's Day 2014, I swallowed a pill camera as both a colonoscopy and endoscopy showed nothing abnormal. But the pill camera definitely showed something in my small intestine which needed surgery right away.
It had been over 18 years since my last brush with melanoma - 18 active, healthy years. I told people I was a cancer survivor and that my life had been hard but that it had taught me to be resilient and strong. The thought of ever having cancer again never came up in any of my thoughts, not even when I was lying in the emergency room getting a life-saving blood transfusion.
Then on Valentine's Day 2014, I swallowed a pill camera as both a colonoscopy and endoscopy showed nothing abnormal. But the pill camera definitely showed something in my small intestine which needed surgery right away.
Did you know that the small intestine is one of the favorite hiding places for melanoma - that and the brain? I didn't know these things when 30 inches of my small intestine was removed during surgery in early March - I didn't know oncologists call melanoma the Sleeping Baby of cancers. I didn't know any of this as I was perfectly healthy and went to a dermatologist religiously and eat well and exercised and took naps and took my vitamins and had a physical every year and ate cherry pie and drank Patz Hall wines and why the fuck was 30 inches of my small intestine removed??
We should wear green I told my wife, for "Good Luck!" I said. It was St. Patrick's Day and we definitely looked lucky sitting in the busy waiting room. Once in my surgeon and I immediately got to the bullshit and funny stuff because we all liked each other like that and what else do you talk about while someone's pulling staples from your abdomen? But then the file folder that he had placed on the counter was opened, and the room got very still and quiet and then you know what's coming and you just want to run out the door and out of the building and just keep running and running and running.....
I've been in a lot of really quiet rooms these days - it's a tough place to be. The room feels hot the air smells funny and your clothes suddenly feel very uncomfortable. I remember hearing Stage 4 and Melanoma and something about a lymph gland and that's when everybody in the room starts crying. Softly, slowly, but then the sobbing and shaking kind of crying - everyone - me, my wife the surgeon the nurse.... quite possibly the saddest and scariest moment of my life.
I've been in a lot of really quiet rooms these days - it's a tough place to be. The room feels hot the air smells funny and your clothes suddenly feel very uncomfortable. I remember hearing Stage 4 and Melanoma and something about a lymph gland and that's when everybody in the room starts crying. Softly, slowly, but then the sobbing and shaking kind of crying - everyone - me, my wife the surgeon the nurse.... quite possibly the saddest and scariest moment of my life.
I was still crying in the parking lot, holding my wife tightly as cars drove around us, telling her over and over again that I was sorry and that I never wanted to let her down like this. We just sobbed in each other's arms and had nothing more to say because really, does anyone know what to say when you've just been diagnosed with Stage 4 cancer?? Not really. But you do know that you really, really wish that you didn't ever have cancer - not now, or 20 years ago.
Fatigued
Apparently, as we age our mind keeps track of which muscles we use, and don't use. After we reach about 40 years old, those muscles that we don't really use anymore will loose mass and strength and over time this leads to severe mobility problems as we reach our elder years. In other words, staying active and getting enough exercise becomes even more important as we age into our 40's, 50's and well beyond.
I have been fortunate to have led a very active life. My father was a very active man and loved to take the family camping or hiking or canoeing or skiing or golfing and loved the mountains just as much as the beaches of Northern California. From his amazing live by example, I have remained an athlete and outdoorsman to this very day. Yet my meds are making it really difficult to get on with what I want to get on with. My oncologists explains that I'm right at that point - 9 infusions - where the worst of the fatigue will happen. The good news from all of of this is that my fatigue is not expected to worsen, only remain steady throughout my therapy. Great. Wonderful. F*ck.
The worst of it goes like this - I get a good nights sleep and wake early and energized. I go downstairs and get my yogurt and fruit and flaxseed meal and juice and vitamins, and watch the news while I eat the same breakfast I've been eating for more years than I can remember. When I'm done, I go back into the kitchen and begin my coffee making rituals (I'm kind of partial to Temple Coffee in Sacramento these days). By this time I'm sick of the news and switch over to "How it's Made" or something on the Golf Channel while I enjoy my coffee and a few delicious madeleines. Then it's back into the kitchen to clean up a bit and suddenly, I'm as tired as I was when I put my head on my pillow just 9 hours ago. Great. Wonderful. F*ck.
Some days are better. Some days are bad. The bad days are where I just feel like it's not even worth trying and I just plain give up, crawl into bed - again - and just wait for another chance to try again tomorrow. Yet this past week I feel something is different. I feel a lot more energized, a lot more focused and a lot happier, too. Why?
Exercise.
Throughout this whole fucked-up ordeal I have been getting to the gym and to the golf course or into the back yard for mowing and weeding or whatever, so it wasn't like I wasn't doing anything. But just recently I think I kind of reached some sort of zenith with my workouts at the gym. I've really started to work more individual muscle groups while still getting in all of my cardio stuff, too and it has really changed my over all energy and well-being. There are 262 (major) muscles in the body and I think as I work more and more of them my system reacts by firing off more neurons in the cerebrum which then relays the message to the cerebellum and then I feel quite good and at peace with everything - instead of just feeling like a flat tire on an old rusted pickup truck.
So seriously - get the f*ck out there and get your ass moving.
I have been fortunate to have led a very active life. My father was a very active man and loved to take the family camping or hiking or canoeing or skiing or golfing and loved the mountains just as much as the beaches of Northern California. From his amazing live by example, I have remained an athlete and outdoorsman to this very day. Yet my meds are making it really difficult to get on with what I want to get on with. My oncologists explains that I'm right at that point - 9 infusions - where the worst of the fatigue will happen. The good news from all of of this is that my fatigue is not expected to worsen, only remain steady throughout my therapy. Great. Wonderful. F*ck.
The worst of it goes like this - I get a good nights sleep and wake early and energized. I go downstairs and get my yogurt and fruit and flaxseed meal and juice and vitamins, and watch the news while I eat the same breakfast I've been eating for more years than I can remember. When I'm done, I go back into the kitchen and begin my coffee making rituals (I'm kind of partial to Temple Coffee in Sacramento these days). By this time I'm sick of the news and switch over to "How it's Made" or something on the Golf Channel while I enjoy my coffee and a few delicious madeleines. Then it's back into the kitchen to clean up a bit and suddenly, I'm as tired as I was when I put my head on my pillow just 9 hours ago. Great. Wonderful. F*ck.
Some days are better. Some days are bad. The bad days are where I just feel like it's not even worth trying and I just plain give up, crawl into bed - again - and just wait for another chance to try again tomorrow. Yet this past week I feel something is different. I feel a lot more energized, a lot more focused and a lot happier, too. Why?
Exercise.
Throughout this whole fucked-up ordeal I have been getting to the gym and to the golf course or into the back yard for mowing and weeding or whatever, so it wasn't like I wasn't doing anything. But just recently I think I kind of reached some sort of zenith with my workouts at the gym. I've really started to work more individual muscle groups while still getting in all of my cardio stuff, too and it has really changed my over all energy and well-being. There are 262 (major) muscles in the body and I think as I work more and more of them my system reacts by firing off more neurons in the cerebrum which then relays the message to the cerebellum and then I feel quite good and at peace with everything - instead of just feeling like a flat tire on an old rusted pickup truck.
So seriously - get the f*ck out there and get your ass moving.
No. 8
This past Tuesday was my 8th infusion of pembrolizumab - 24 weeks in all. I feel good, even though I can feel old man fatigue sneaking up on me a little bit more. I'm getting to the gym at least 3 days a week, and the golf course on the other days. In between I work in the yard or on the truck or just browse the aisles of Pagano's - the local-owned bitchin hardware store with aisles so narrow only one person at a time can walk their lengths.
I'm also on a medical leave from my job. For some reason, teaching 5th grade and managing Stage 4 Melanoma didn't work out so well. I tried it for a short time, but I just became resentful for not prioritizing my healing, over teaching. I actually received my 1st infusion on the 2nd day of this school year. I was ready to go, ready to work and ready to get my meds and do it all. I was even blessed with a really sweet group of kids and thought "This ain't so bad... I can handle this 'cause I'm Mr Landers and ....."
Fuck that. I think it was the 4th day of school where I was looking out the window thinking what the hell was I doing. I know there's a lot of people on this drug that are managing it just fine and continue to work and have little to no side effects, but.... I really didn't want to work. I just wanted to take a break from it all and give myself, my body, my soul my everything every chance to heal and become well again. Even Dr Daud agreed. He's so wonderfully blunt sometimes - I like that in a person. "Take a break!" he said with his wonderfully slight Indian accent, when I first brought up the subject. So I did, and I am.
I'm cashing in all of my sick days, plus receiving another 60 from my unions catastrophic sick bank. I'm covered. I got this. I'm so very fucking lucky, and I've been lucky for most of my life, when it comes to the things that really count. I used to think my life was just too fucking hard to manage humanely, but as I got older I came to understand that my life's challenges were really my life's fortune. When you've had as much loss as I have, it's really the only way to live your life - fortunately.
The plan is to keep me on my current therapy until PET/CT scans come back 100% clear of any tumors, and then for awhile after that. His thinking is that this will take just over a year, about 20 infusions in all. I asked Dr Daud if anyone, over time, had built up a resistance to pembrolizumab, and if their positive results began to deteriorate. He said there had been a few cases like this, but their responses were nothing like mine. So here I am being lucky again, for having a "best possible response" to my therapy and moving one infusion closer to NED, or no evidence of disease.
I want to believe that. I want to believe the scans so far and the radiologist's reports and all of the markers and comments and blood tests and smiles.... but I can't. Just like a lot of people I'm a stage 4 cancer patient and I know all too well that it will never just be "over". So I go to the gym, I play golf, I eat well and take sleep meds when I need to and pray so hard and so much and not just for me, but for all of us. Everyday.
I'm also on a medical leave from my job. For some reason, teaching 5th grade and managing Stage 4 Melanoma didn't work out so well. I tried it for a short time, but I just became resentful for not prioritizing my healing, over teaching. I actually received my 1st infusion on the 2nd day of this school year. I was ready to go, ready to work and ready to get my meds and do it all. I was even blessed with a really sweet group of kids and thought "This ain't so bad... I can handle this 'cause I'm Mr Landers and ....."
Fuck that. I think it was the 4th day of school where I was looking out the window thinking what the hell was I doing. I know there's a lot of people on this drug that are managing it just fine and continue to work and have little to no side effects, but.... I really didn't want to work. I just wanted to take a break from it all and give myself, my body, my soul my everything every chance to heal and become well again. Even Dr Daud agreed. He's so wonderfully blunt sometimes - I like that in a person. "Take a break!" he said with his wonderfully slight Indian accent, when I first brought up the subject. So I did, and I am.
I'm cashing in all of my sick days, plus receiving another 60 from my unions catastrophic sick bank. I'm covered. I got this. I'm so very fucking lucky, and I've been lucky for most of my life, when it comes to the things that really count. I used to think my life was just too fucking hard to manage humanely, but as I got older I came to understand that my life's challenges were really my life's fortune. When you've had as much loss as I have, it's really the only way to live your life - fortunately.
The plan is to keep me on my current therapy until PET/CT scans come back 100% clear of any tumors, and then for awhile after that. His thinking is that this will take just over a year, about 20 infusions in all. I asked Dr Daud if anyone, over time, had built up a resistance to pembrolizumab, and if their positive results began to deteriorate. He said there had been a few cases like this, but their responses were nothing like mine. So here I am being lucky again, for having a "best possible response" to my therapy and moving one infusion closer to NED, or no evidence of disease.
I want to believe that. I want to believe the scans so far and the radiologist's reports and all of the markers and comments and blood tests and smiles.... but I can't. Just like a lot of people I'm a stage 4 cancer patient and I know all too well that it will never just be "over". So I go to the gym, I play golf, I eat well and take sleep meds when I need to and pray so hard and so much and not just for me, but for all of us. Everyday.
Immunology
If you've got a spare 34 minutes The Melanoma Research Alliance has a great video on immunotherapy here: What is Immunotherapy? I'll try and summarize the info for people who only have, say 3 to 5 minutes ;-)
First, you should know that for a very long time there were only 3 avenues for cancer therapy - surgery, radiation, or chemotherapy - or a combination of them. Immunotherapy is rather new, with real progress only being made within the last 7 years or so. This is important to consider because within the next ten years, immunotherapy is expected to be used for at least 70% of all cancer patients. That's a huge shift from what most people understand about common cancer therapies. And as I write this, the drug I'm currently on (Keytruda) is moving into clinical trials for at least 3 other types of cancer.
The next thing to understand is that our immune system basically has 2 ways of working. One way is quick and fast, similar to the way white blood cells build up to fight a small cut that's gotten infected. The other way is like a memory, like when we're given childhood vaccines. Our immune system can remember certain signatures and build a defense that prevents future infections. This is critical and key to understand, because it is hoped that my immune system is building a memory from what my therapy is doing that will allow my own system to manage any future tumors, with out any new meds.
So what does all of this mean? Well, it means that cancer therapies will be much more targeted than they have been in the past, which is a really good thing. Chemotherapy and radiation are indiscriminate - they kill whatever you send them at. Immunotherapy does not kill anything, it only serves to boost or modify the way your own immune system works. In this way your immune system now attacks those previously "camouflaged" tumors that it did not detect before.
Each new immunotherapy drug, such as the one I'm on now, helps cancer researchers target their next drugs in hopes of unlocking people's immune systems to better fight off cancer. It's an amazing new group of therapies that I hope will help others in the way its helped me. Those still in the "70%" need all the help and attention they can get. Truly.
First, you should know that for a very long time there were only 3 avenues for cancer therapy - surgery, radiation, or chemotherapy - or a combination of them. Immunotherapy is rather new, with real progress only being made within the last 7 years or so. This is important to consider because within the next ten years, immunotherapy is expected to be used for at least 70% of all cancer patients. That's a huge shift from what most people understand about common cancer therapies. And as I write this, the drug I'm currently on (Keytruda) is moving into clinical trials for at least 3 other types of cancer.
The next thing to understand is that our immune system basically has 2 ways of working. One way is quick and fast, similar to the way white blood cells build up to fight a small cut that's gotten infected. The other way is like a memory, like when we're given childhood vaccines. Our immune system can remember certain signatures and build a defense that prevents future infections. This is critical and key to understand, because it is hoped that my immune system is building a memory from what my therapy is doing that will allow my own system to manage any future tumors, with out any new meds.
So what does all of this mean? Well, it means that cancer therapies will be much more targeted than they have been in the past, which is a really good thing. Chemotherapy and radiation are indiscriminate - they kill whatever you send them at. Immunotherapy does not kill anything, it only serves to boost or modify the way your own immune system works. In this way your immune system now attacks those previously "camouflaged" tumors that it did not detect before.
Each new immunotherapy drug, such as the one I'm on now, helps cancer researchers target their next drugs in hopes of unlocking people's immune systems to better fight off cancer. It's an amazing new group of therapies that I hope will help others in the way its helped me. Those still in the "70%" need all the help and attention they can get. Truly.
1600 Divis
My infusion appointments are long and intense. You need a really good night of sleep to deal with all of it. First is blood work on the 1st floor, but only after running to the bathroom because of the liter of water I drank on the drive over to help get my veins nice and plumpy. Then it's up to the 4th floor to wait for my appointment with Dr Daud, with the white board behind the receptionist giving me an idea of how badly he's behind schedule - and it's always really bad. While waiting, I get an email from the UCSF MyChart App that has the results from the blood that was drawn just 30 minutes ago. I carefully and quietly check all of the results because, well, that's what good cancer patients do. After reading the results I go back to my iPhone solitaire card game.
The 4th floor is a busy place, with about 9 oncologists holding clinic there. People come from all over the country to see doctors here, and so the wait can be maddening, especially for first time patients - the ones with a pile of paperwork in their lap and quiet looks in their eyes. They're impatient and keep checking the time, and watching the clinic door as names are called one by one. Their guts are tight from the stress of it all and you just feel absolutely betrayed, and want it all to just go away.
Then there's the regulars, like me. We really don't care about the crazy long wait anymore. We just eat our snacks and pull on our headphones and play music and games and text and whatever until we hear our name called. We also have a backpack or something similar, to hold all of our stuff. And water - we got lots of water. Almost all of us are headed up to the infusion ward after we see our oncologists and we've learned that drinking a ton of water is paramount while on chemo or immunotherapy. The only problem is timing your pees so you're not in the bathroom when they call your name.
When I'm called I run to the bathroom at the end of the hall. Then, I get my height checked and weighed. I have my blood pressure, and temperature and oxygen level checked and asked whether or not I've fallen more than 2 times since my last visit. Then I'm taken into one of the exam rooms - finally - to wait some more. I just turn on the music again and snack on energy bars and chocolate and more water, of course. I also open my email app and find the email I sent to myself earlier that morning - the one with the list of questions for my oncologist. Always the questions. Every fucking three weeks there's always more questions about what the hell is going on. Le sigh.
The 4th floor is a busy place, with about 9 oncologists holding clinic there. People come from all over the country to see doctors here, and so the wait can be maddening, especially for first time patients - the ones with a pile of paperwork in their lap and quiet looks in their eyes. They're impatient and keep checking the time, and watching the clinic door as names are called one by one. Their guts are tight from the stress of it all and you just feel absolutely betrayed, and want it all to just go away.
Then there's the regulars, like me. We really don't care about the crazy long wait anymore. We just eat our snacks and pull on our headphones and play music and games and text and whatever until we hear our name called. We also have a backpack or something similar, to hold all of our stuff. And water - we got lots of water. Almost all of us are headed up to the infusion ward after we see our oncologists and we've learned that drinking a ton of water is paramount while on chemo or immunotherapy. The only problem is timing your pees so you're not in the bathroom when they call your name.
When I'm called I run to the bathroom at the end of the hall. Then, I get my height checked and weighed. I have my blood pressure, and temperature and oxygen level checked and asked whether or not I've fallen more than 2 times since my last visit. Then I'm taken into one of the exam rooms - finally - to wait some more. I just turn on the music again and snack on energy bars and chocolate and more water, of course. I also open my email app and find the email I sent to myself earlier that morning - the one with the list of questions for my oncologist. Always the questions. Every fucking three weeks there's always more questions about what the hell is going on. Le sigh.
Meds
I'm having great difficulty coming to terms with where I am. I want to feel positive and glad for my remarkable progress, yet deep down I feel hollow because so many others are stuck in illness and pain. At my last visit to my oncologist I learned that only 30% of patients taking Keytruda (pembrolizumab) have any positive response at all, and within that 30% I'm having what they call a 'complete response', or the best response possible. "But what about those in the 70%?" I ask. "What are they doing?"
When I ask these questions the room gets quiet, again, and it stays quiet for a lot longer that it should. The nurse and my oncologist's assistant in the room stop making eye contact with everyone else, and I'm left watching Dr Daud on my own. I hear the words "hope" and "chemotherapy". Fuck. But I'm also told that Keytruda and peoples response to it (good or not so good) also helps drug research companies as they try to figure out what to do next. Ok. That's cool.
Yet my head is still stuck on all of those that I wait with for clinic on the 4th floor at 1600 Divisadero, and the ones that I sit with on the 5th floor as we get infusions. So very heartbreaking. I even keep my voice quiet and limit my conversations with the nurses while I'm getting my infusion. I am almost ashamed to say I'm doing so well. But they know I am. It's a very intimate and kind place, the infusion ward on the 5th floor, and the nurses all know. Of course they know. I'm coming up on 30 weeks of treatment and they've watched me the whole way - which is really special and I love them but I really just want to put on my headphones and sit silently as I get my poke and meds.
When I'm done 1600 is almost empty. The streets are dark and filled with rush hour. I leave the parking lot and drive over to my best friends house for dinner. Thank God for this because I couldn't handle being stuck alone in San Francisco rush hour traffic after 4 -6 hours in clinic. I need hot food and my friends and their kids's noise and a little wine and my wife's sweet texts asking if I'm ok and what happened and call me. Yea, that's good.
When I ask these questions the room gets quiet, again, and it stays quiet for a lot longer that it should. The nurse and my oncologist's assistant in the room stop making eye contact with everyone else, and I'm left watching Dr Daud on my own. I hear the words "hope" and "chemotherapy". Fuck. But I'm also told that Keytruda and peoples response to it (good or not so good) also helps drug research companies as they try to figure out what to do next. Ok. That's cool.
Yet my head is still stuck on all of those that I wait with for clinic on the 4th floor at 1600 Divisadero, and the ones that I sit with on the 5th floor as we get infusions. So very heartbreaking. I even keep my voice quiet and limit my conversations with the nurses while I'm getting my infusion. I am almost ashamed to say I'm doing so well. But they know I am. It's a very intimate and kind place, the infusion ward on the 5th floor, and the nurses all know. Of course they know. I'm coming up on 30 weeks of treatment and they've watched me the whole way - which is really special and I love them but I really just want to put on my headphones and sit silently as I get my poke and meds.
When I'm done 1600 is almost empty. The streets are dark and filled with rush hour. I leave the parking lot and drive over to my best friends house for dinner. Thank God for this because I couldn't handle being stuck alone in San Francisco rush hour traffic after 4 -6 hours in clinic. I need hot food and my friends and their kids's noise and a little wine and my wife's sweet texts asking if I'm ok and what happened and call me. Yea, that's good.
Next time
This blog is intended for myself mostly, to try and make sense of my Stage 4 Melanoma journey. I needed some sort of clearing house for everything I'm bombarded with these days, and a place to try and sort it all out. As such, I make no apologies for content or language or anything. It is what it is. Deal.
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