The thing in your stomach that send a signal-message to your brain, telling you that you're hungry and that you should eat .. the chemo damages this bio-mechanism (.. among other things).
I pretty much never feel like eating. Then I get light-headed and this tells me that I need to eat. So I do, and the light-headedness goes away.
Trying to put the weight back on is like a full-time job. Sometimes I just say, "Screw it .. I'm taking a break from putting food in my stomach today," and I go without food for the day. (After my morning coffee, of course.) Maybe a spoonful of peanut butter.
I feel good during these days (.. maybe even great), but the doctor told me not to do this. I can easily go the whole day without eating. Very easily. Perhaps too easily.
Cousin Patti said that "The worst thing you can do for your stomach is to have a strong cup of coffee in the morning and then eat nothing the rest of the day."
I said, "Oh, that's my favorite thing to do. I actually have decent energy levels on these days."
I lost 30 pounds during treatment, frighteningly fast (180 » 150). After treatment I figured that my appetite would come roaring back, so I just ate when I felt like eating.
I lost 10 more pounds without even realizing it (.. all the way down to » 140). That scared me.
So I learned that I need to eat even when I dont feel like it. This is harder to do than you might imagine .. a lot harder.
I could try to explain it to you, but I would be wasting my time. Because I know that you could never imagine what it is like. Because I could never imagine it myself. (I am making myself eat a little oatmeal right now.)
My sense of taste varies, but my sense of smell is the same as it was before treatment. So things that smell good, such as coffee in the morning, I can appreciate more than something like, say, watermelon, which has barely any smell.
So I ask friends, "What do you think of this watermelon?" If they say that it's super-sweet and yummy, then I will imagine it tasting sweet and yummy, and I will want to eat more of this watermelon.
But if they say, "This one is disappointing. It's not very sweet," .. then I will imagine it tasting not so sweet and I will not want to eat any more of it .. even tho I can taste no difference between a sweet watermelon and one that is not sweet.
Doesnt that strike you as strange? It strikes me as strange and I'm the one doing it.
My point here is that I now eat primarily for nutrition and that 'taste' is primarily a function of aroma, but mostly of my imagination.
My weight is stuck around 158-159, where it has been for months now. I was planning to try to get up to 165, but it looks like I might have to set up camp here. At this weight. For now, any way. I tried several times to move up in weight, and went nowhere.
But everybody tells me that I look great. This doctor-lady today told me that I looked great. My oncologist last month told me that I looked great. The neighbor-guy just last week .. said I look great.
Much of life is relative. I'm sure that Einstein would back me up on that.
Had my first-ever flu shot today. Barely felt it. The guy comes in and distracts you with a clipboard while the girl sneaks up behind you and wipes your tricep with an alcohol swab. "They have good technique," I thought.
I gave them 4 vials of blood today. "Save some for me," I told the girl with bright red hair.
So, most of the time I just say that I am feeling great (emotionally and psychologically) .. because merely tired is better than dead, way better .. but he really means physically.
So I said, "Well, the biggest thing is probably the fatigue. I get wore out pretty quickly, and if I push it, then it takes me a long time to recover. I have to rest for a long time .. sometimes days."
He did not hesiate. As if knowing exactly what the problem was, he said, "Problems with fatigue are normally associated with the thyroid."
When they start shooting you with these massive "doses" of radiation .. the first thing you notice is that the sides of your tongue feel like somebody rubbed a freshly-cut jalapeno pepper along them. Perhaps this is due to the radiation "scattering" off of the metal in your mouth.
The radiation does indeed "scatter" off the metal in your fillings and from your gold crowns, of which I have a number .. sorta like the way bright sunlight scatters off of a car's chrome bumpers.
But, exactly what makes the sides of your tongue feel like somebody rubbed a jalapeno there I cannot say.
You notice this within the first few days. But the next thing you notice is your » voice box. Your larynx. It feels dry. You keep feeling like you need to take a swig of water.
I remember walking down one of the long hallways there at Moores and thinking, "I can feel them targeting my voice box with the radiation."
This was only the second week. All the Tabasco I was using that first week probably didnt help .. because I didnt realize that it was the radiation that was making my food difficult to taste.
I was splashing liberal amounts of Tabasco on everything that I was eating that first week .. trying to keep my weight up. (This was probably the single biggest mistake I made during treatment .. the Tabasco .. a mistake for which I paid dearly.)
I was actually thinking of calling the people at Oscar Meyer and complaining to them .. for selling shitty bacon that was obviously inferior because it had no taste to it, no flavor to speak of. (You dont think clearly once you start getting chemo.)
My point here is simply to say that I could tell that they were focusing lots of radiation on my voice box. (My voice is still screwed up .. because of the radiation scarring of my larynx.)
So my oncologist is going to find the results of my last blood test and see how my thyroid is doing. The Clinical trials girl called later to say that my thyroid was fine. So I didnt give it any more thought.
But I would still get soo tired sometimes .. where even sitting up was too much .. where I needed to lie down and rest.
But not always. Sometimes I would feel pretty good. I was always trying to figure out the difference between when I felt good and when I felt tired.
But there was a limit to my physical endurance .. even when I was feeling good. And I when I hit that limit, I was done. And if I tried to push it, and keep going, that was usually something I regretted doing.
One doctor later said that it takes a lot of energy to put weight back on, for the body to build muscle .. the weight I had lost .. so they werent surprised that I felt tired from time to time in my weakened post-treatment phase .. and that I felt like I needed to lie down.
I have had iron stuck into my veins so many times that I am now something of a connoisseur. I could grade for you, on a scale of 1 to 10, how good of an I-V setter someone is.
"Wow," I said to this girl with bright reddish-orange hair, "You are really good. I hardly felt that at all." The last time somebody slipped iron into one of my veins that painlessly was when the yoga bio-hazard nurse set me up.
"I've been doing this a while," she admitted.
Today the results of that blood test came back and they said that my thyroid is low. Low thyroid hormone output makes you feel tired. It makes you feel like your ass is dragging. And that is exactly how I have been feeling. Frustratingly so at times.
"Do you want me to prescribe you some meds?"
"Yes," I said .. without having to think about it. If this meant I could get back more energy, more stamina .. I am all for it.
So I walked across the street to the pharmacy. But they never want to just put the stupid pills into a bottle and give them to me. "We first need to check this, and then we need to check that. Come back tomorrow. But call first."
So I still dont have the stupid pills. But I am very much looking forward to seeing if they make me feel like my ass isnt dragging so much.
Even tho I dont have the pills yet, I am still excited about the prospect of more energy. I feel happy about that .. even tho they are saying my thyroid isnt cutting the hormonal mustard.
Walking out of my doctor's visit today, I was thinking about how the thyroid sits just below my voice box (which has radiation scarring), which was blasted with massive doses radiation .. so it doesnt seem so strange that my thyroid needs help.
Your salivary glands sit up higher in your neck, and they get cooked pretty badly with the radiation, which is why I always carry around a spritzer of Biotene with me (for dry mouth). Sometimes the dry mouth is not so bad, but other times it is.
It is very cool the way that they are able to "sculpt" the radiation beam. This technology has only been around for the last decade or so. Before this, there was no sculpting. Only blasting.
I know a little something about radiation and the biological damage that it causes. I actually know a lot something about it. I mean, this is what I did.
I did not even wanna know how big of a dose that they were shooting me with. Because then I would be able to convert that number into its equivalent biological damage.
I knew that if you can actually feel the effects of the radiation .. then, that is a humongous dose.
Their aim with these gigantic doses of radiation .. is to bust/break/damage/cripple the DNA of the cancer cells, which divide and grow at a life-threatening pace .. without fucking up too badly the DNA of your regular/good/healthy cells.
I am still feeling the effects of this lack of fun.
With my particular treatment, they shot from the level of my nose to the base of my neck (not my brain).
Anyway, I am so happy that I might be able to address this fatigue thing that has been kicking my butt. Because, right now, my ass is dragging pretty badly .. and yesterday, it was dragging even worse.
Much of the time, it is just sheer willpower that gets me thru the day (physically speaking).
Sometimes I feel like I could sleep for a week. I know that sounds like hyperbole .. but I can assure you that it's not. I can hardly wait to get those meds. What I couldnt do .. with a little more energy.
Speaking of more energy and thyroids .. a friend once said to me .. about a guy who had married a girl with a hyperactive thyroid » "If you ever find yourself married to a girl with a thyroid problem .. just go ahead and shoot yourself. It's be a lot easier that way."
My weight is up to 160 .. or thereabouts. So I have now put back on exactly half the weight I lost during treatment (180 to 140). It is very difficult to put the weight back on .. because I rarely feel hungry. I need to eat even when I dont feel hungry.
I feel best on an empty stomach .. but then I start to get light-headed .. and that's what tells me that I need to eat. So I do, and the light-headedness goes away.
Update: I got the meds. I so badly want these things to make the tiredness go away. After a while, you get tired of feeling tired.
So I was walking out of the store, thinking, "The pharmacist said to take these things once a day, first thing in the morning on an empty stomach with some water. It is the first thing in the morning now, and I havent had anything to eat yet .. and I always carry a bottle of water with me."
So I popped the cap on the bottle while walking out of the store .. and standing there in the parking lot, I popped one of these bad boys. 50 mcg of something or other.
I would be lying if I said that the thought didnt pass thru my mind a few seconds later » "Hey, I think I feel better already."
[ My brother is a big believer in the power of placebos. "Hey, if it makes you feel better, who cares?" He does have a point there. ]
Now, a few hours later in the day, it did indeed feel like that sense of emotional exhaustion that I have been feeling went away. I can better (more clearly) feel the (mere) physical exhaustion. And I thought, "Oh, this definitely feels better." [ this sense of mere physical tiredness. ]
Much of life is relative, no?
After you are getting over the flu .. you still feel like shit .. but you definitely feel better than you did yesterday. So you feel like you're ready to rock-n-roll again .. even tho you really aint. That's sorta how I feel now.
I just feel what I would call 'regular' tired right now .. no more of the 'exhausted' tired. (If that makes sense.)
Feeling less of the emotinal/glandular fatigue .. allows me to feel more of the physical tiredness. It may sound counterintuitive, but this actually feels much better.
The doctor said that it can take a while for them to dial in the dosage that works best for me. He is going to recheck my thyroid levels in a month. (I already have the appointment.)
Cousin Patti said that it can make you feel jittery if they prescribe a dose that is too high. I said, "Jittery? I dont like jittery. I would rather feel tired."
Still feeling (physically) fatigued, I thought, "I definitely do not feel jittery .. not even a little. I feel too tired to feel jittery."
I definitely feel better .. on an emotional, glandular level. More relaxed. I feel like I am finally able to get in touch with just how tired I really feel.
Patti herself is on these same meds .. for the same reason. A prescription almost identical to mine. I was talking to her hubby. He's an internist. He gave me the low-down on how things work.
I saw my surgeon earlier this week for a 3-month check-up. He found no signs of returning cancer. (Cancer-free at 16 months out.)
My chemo doctor said that, if this type of cancer does return .. it usually returns between one and two years out .. which is right where I am now.
Almost smack-dab in the middle. I see my oncologist in another few months.
I wanted to write a little thing on Sunday, to help celebrate National Cancer Survivors day .. but my ass was dragging.
Then, I was going to write on Monday, and then again on Tuesday. But I never could summon the motivation. All week long my ass was dragging.
A couple of weeks ago, I ran out of this iron supplement I've been taking. The chemo left me badly anemic (.. which makes you feel like your ass is dragging) .. along with other blood deficiencies.
Hemoglobin is an iron-based molecule. My chemo doctor said that hemoglobin takes a long time for your body to make, and that a swig of iron-rich juice shouldnt make any major difference in energy levels.
But, whenever I run out of this stuff .. a few days later, my ass starts dragging. (Every time .. it's reproducible.)
Yesterday, my order arrived and last night I noticed that I was feeling good, for some reason. I felt so good physically that I actually fell asleep. (Sometimes I feel like I could sleep for a week. More than just sometimes, actually.)
I am trying to learn about and adapt to my brave new world .. where energy levels are far more limited. But after cancer and especially after treatment, these kinds of things seem like mere inconveniences. Because I'm just happy to be alive. Above ground is where it's at.
Managing fatigue has been a major thing post-treatment. Sometimes I wake exhausted in the morning and go from there. Beyond exhausted, sometimes .. like you have to sleep all night long just to realize how tired you really are. How fatigued. How badly your ass is dragging.
Back when I had been diagnosed, but before treatment actually began .. some friends tried to warn me about the fatigue that treatment brings. But I can see now that you cannot possibly know the level of fatigue they were talking about.
I dont even try to tell people what it feels like, because I know that they cannot possibly imagine what it is like. Because I know that I certainly couldnt. Because it's so far beyond anything I had ever experienced.
(So very far beyond that you could never possibly imagine .. even if you tried. It feels like you need a shitload of energy just to get back up to zero.)
I remember talking to the Dog and saying, "I didnt know that you could be this tired and still be alive." And this was not hyperbole. Not hardly.
I have noticed that I feel the best when I do nothing but rest the preceding day .. which, or course, is not always possible. The more I do (physically speaking) the more fatigued I feel the next day.
Most of my life, I had an abundance of energy .. maybe even an over-abundance. So this is a new world for me .. a little frustrating, perhaps. But not as frustrating as it is to have cancer. (Not nearly.)
Did I mention that my iron supplement arrived yesterday? This stuff is made in Germany. I ordered the bigger 23-oz bottle this time .. so it shoud last a little longer.
I have dropped a few pounds lately. This is a first for me since I started adding weight post-treatment. I almost never feel hungry anymore. And if I eat only when I feel like it, then I noticed that my weight will start dropping.
So I need to eat even when I dont feel like it. But sometimes I dont. I like the feeling of nothing in my gut. I feel the best after coffee in the morning on an empty stomch. Vrrrooom.
A few times, I have tried to go without coffee for the day. It was not good. I caved later in the day and fixed myself a nice, strong cup. Then, I felt better again.
Instead of hunger, I start to feel lightheaded. This tells me I need to eat. Then, I will eat something and the lightheadedness goes away.
So anyway, happy National Cancer Survivors day and week to me. I am not even going to tell you how I celebrated.
» Even before the diagnosis, I found myself resonating (quite naturally) with the existentialists, such as Nietzsche and Dostoevsky and Kafka. Time after time, I would read some cool stuff that spoke to me at a deep level. So I googled the name of the author and read a little bit about them and discovered that this cool stuff was coming from yet another person who was considered something called an existentialist. Whatever that was.
Last Day of Winter
"I am obviously feeling these existentialists," I would say to myself. Tho I wasnt sure what exactly this meant.
The term » existentialism, to me, just seemed so unbearably pretentious.
But before I get carried away there .. let me first note that today is the first day of spring.
The exact moment when the sun quietly crosses the equator heading north (toward us) and enters the northern hemisphere is » 9:30 PM Pacific Daylight Time (PDT).
I am glad to see spring arrive. After treatment, I have noticed that the cold bothers me more.
The chemo, while designed to attack cancer cells, also puts a hurting on your blood .. on your red blood cells, and on your white blood cells, and especially on your platelets and hemoglobin. And it just takes time to recover. (I see my oncologist in another week.)
One time, I played this best-ball golf tournament after work on one fine summer day .. as part of a foursome of guys from my work-group. And one of these guys had been in college on a pro-track .. until he hurt his back in a car accident.
But he could still hit a ball that made your eyeballs pop out. And he was just a little dude, too. Kinda wiry. He could hit far and he was wicked-accurate with the irons.
Anyway, we won that tournament (in Maryland). And even tho we hardly used any of my balls, despite some pretty good shots .. I remember how GOOD I felt driving home. (It was a long drive back to Pennsylvania.) I think there were 10 or 12 teams.
I felt like a million bucks. Very much alive and vibrant. So happy .. that it actually surprised me. "How can I possibly be feeling this happy about winning a stupid golf tournament where I hardly even contributed anything to the winning?" It didnt make sense. But I was feeling good, anyway.
It just feels so good to win, sometimes. I could see how something that felt that good .. could easily become addicting. Are you girls addicted? (It would certainly seem so.)
But I can see now that this is not how it works. I am not saying that the cancer survivor cannot go on to bigger and better things .. no, sir. Rather I am saying that » you cannot go back.
There is no going back. Those days are gone forever. You live in a new world, now .. with new rules. This has become clear .. very clear. I get it. "Yo comprendo, mi amigo."
Rad note » this month's entry grew so large that I split it into two pages and off-loaded them to the monthly archives, where I can work with it a little easier. First of the two is here » March, 2016 - page 1