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.
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.
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