» I can feel the opiods kicking in now. I had a root canal earlier today. This was my second. My first was just last week. Six days ago. They have me on antibiotics. Amoxicillan.
I just took a half-pill. I have never taken more than half .. being the lightweight cancer survivor that I am.
Back before cancer treatment ever began, my dentist told me that I should have all my teeth yanked out because he had seen before what happens to patient's teeth after this cancer treatment .. where they blast your mouth and throat with phenomenal amounts of radiation, including your salivary glands, which get cooked microwave-style.
He said, "A year or two later and all your teeth rot out at the gum-line and then you need 28 root canals."
I was shaking walking out of that dentist's office. As if I didnt already have enough problems to be concerned about with a positive diagnosis for squamous-cell carcinoma .. which had already killed plenty of people.
Well .. I am 2½ years out now, and I just had my second root canal today. I never had a root canal before last week. My teeth have been pretty good, most of my life. My mom told me that "good teeth" were one of the reasons why she married my dad.
The Gist of the Problem
I am seeing now what the problem is regarding these root canals. Sometimes my salivary glands seem fine. But sometimes they dont. And I am not really sure why they sometimes seem to work better than at other times.
But a root canal is required when the decay goes far enough down into the tooth. Most cavities form on the crown, which is further from the root.
But the dry mouth makes the area around your gum-line more susceptible to problems. They tell you this even before cancer treatment begins. It is a known problem. Well known. (I do lots of rinsing with warm salty water and baking soda. This feels good.)
And if you dont catch the cavity right away .. because the gum-line is already so close to the root .. these types of things quickly become fodder for root canals.
I dont need any more root canals. Just these two. Both of these are from the little teeth in the middle on the bottom. Easy to get to.
» New Radiation Machines
Regarding the difference between my dentist's orally apocalyptic predictions .. and my own existential reality .. might be due to the new radiation machines that were invented within the last decade or so.
These new machines 'sculpt' the radiation .. to where you want it to go, and away from those places where you do not want it.
It is a very math-intentive operation .. which is different for every patient. Because every patient is different.
From a techno-geeky perspective from someone who loves to learn how shit works .. especially cool shit .. these machines were giving me a total boner.
And then, to see these machines passing slowly right in front of your faces .. maybe 12 inches away .. well, this was something entirely. You can actually see the pins moving and adjusting as the head passing right there in front of your face. (Which is bolted down firmly using a formed plastic mesh .. so you dont move at all.)
I also have two broken teeth .. in the back, on the bottom. They need crowns. But that's another story.
» It Felt Like the Pain Went Down into My Soul
Speaking of another story .. my housemate back when I was living in San Clemente said that he needed a root canal when he was a kid and that his dad was too cheap to spring for a shot of Novocaine. "It hurt so bad," he told me, "that it felt like the pain went down into my soul."
Today's root canal hurts worse than the one I had last week. Last week, I didnt even need any pain meds. I was so stoked.
But this week, for this tooth, they shoved a metal rod down into my jaw bone .. as extra support for the tooth. That sucker hurt when he did that. Ouch. I am sitting here with a piece of ice pressed against my lower jaw and that feels much better.
This guy knows his shit. Root canals and crowns .. this is all he does. He is an expert in root canals and crowns.
He is very no-drama. Very low-key. Almost bored. Which is nice, because I was feeling very un-bored when I went in last week for that first-ever root canal. He must have said five times, "Let me know if you feel anything and we will stop."
» The Unspeakable Term
The very concept of drilling down into the rotten core of a part of you .. this is not a very pleasant image to hold in mind .. let me tell you.
In the office, they dont even use the words "root canal." They simply say, "RCT." When I overheard them use the term, I said, "What's RCT?"
When they told me, I thought, "Oh, I can see why you use 'RCT' instead."
The girls that run his front office are some of the best I've worked with anywhere. And I have dealt with more front offices than I care to recall. They almost make you look forward to your next root canal.
I probably gave up on this root canal ten times. They are like, "This is not unusual. Dont worry, we will resubmit with a different x-ray." They also had me get a letter from my radiation oncologist .. detailing my treatment and the effects of such treatment. (They liked that letter.)
» Oh My God
Back when they were first planning to blast me with high-energy radiation, I was curious about how much radiation they were planning to use .. because radiation is my thing. My degree is in radiation protection.
Anyway, I didnt want to know. Maybe I was too scared to know. But when this letter came in the mail, I looked at it, naturally, and there were the doses listed .. individual doses (exposures) listed by date and accumulated totals. The letter almost had a legal feel to it.
When I saw these doses that I never wanted to see .. I said, "Oh my God." [ And realized that it was good intuition that I didnt want to know. ]
I thought, "If I ever let somebody get this much radiation, I would've been fired a thousand times over."
» Have a Nice Day
The reason why I so appreciate these front-office people is because they deal with the bureaucratic aspects of getting these procedures approved by the insurance companies. After treatment, the cancer survivor is less equipped, emotionally speaking, to deal with bureaucratic tangles.
One dentist told me, "Your coverage does not cover these procedures. But it does cover extractions .. so we will wait until you need an extraction and then we will pull out your teeth. See you later, and have a nice day."
I may be dramatizing his statement a little .. but that is most certainly the essence of what that dentist said.
» Calling from the Edge of Another Abyss
Every time I encounter such things, and I need someone to talk me away from the edge of the abyss, I call cousin Patti. I said to her, "I hate to just call you, cuz, when I am freaking out .. but you are just so good at it .. at putting things in perspective."
When things are going well for me, we dont talk nearly as much. But she is like, "Dont worry about it .. you can call any time."
» Email Problems
I also want to let readers know that a couple of the unused email accounts that I have were hacked and sending out countless emails for Russian brides. Gmail and Yahoo and some of the big email services blocked the whole site. So I can't SEND emails to folks with those accounts. Which is pretty much everybody.
It just gets immediately bounced back. Even if I am simply replying. I have since deleted these hacked email accounts, but until I straighted things out with Gmail, I can't respond to email.
But I can still receive emails fine. No problemo. (I see you KJ. And I loved the photos of Japan from my South African friend .. who is having a baby girl next month. I am so happy for him. His first. He will definitely be a good dad.)
» I finally got that cancer cut off my chest .. which had been growing there for a few years. I somehow had the idea that you would be able to cover the wound with a postage stamp-sized bandage. Au contraire.
No More Cancer (Again)
There is a 2-inch cut on my chest. It's probably a little bigger than 2 inches, but I refuse to get a ruler and measure it. But it's way bigger than I had imagined.
The first time that I pulled off the bandage, I said, "Oh, my God."
My dermatologist said, "This is actually a pretty big tumor."
When I first met my dermatologist a few weeks ago, I said, "How old are you? You're not old enough to be a doctor." He looks so young.
He told me that there were a number of options to deal with this thing, such as a chemo cream and some "scrape and burn" method.
I told him, "I am so done with chemo. I dont want anything more to do with chemo. And scraping and burning sounds like no fun."
He said, "If we cut it off, it'll leave a scar."
I said, "I used to be into the vanity thing .. but I am so far beyond that now. I am just trying to stay alive. Plus, scars make you look like a tough guy."
He said that cutting it off was the only way to insure, with a 99.9% probability, that all the bad stuff would be gone. "Let's do that, then." I said.
I was actually stressing more than I had expected on the morning of the cut. I woke at 4AM and couldnt get back to sleep.
I arrived 30 minutes early .. in order to decompress a little before the cut. But they called me right away and said, "We appreciate you coming in early."
After treatment I have noticed that I bleed a little longer than I used to. But I never have a problem with the bleeding stopping.
When they did the biopsy for this thing on my chest, my doctor had a little trouble stopping the bleeding.
When the dermatologist walked into the room, on the morning of the cut, I said, "My doctor told me to tell you that I am a bleeder."
My dermatologist was very cool. "I'm not worried about that at all," he said.
I did not even drink any coffee the morning of the cut because I didnt want anything to elevate my blood pressure. Tho my dermatologist said that drinking coffee was no problem.
I was still sitting in the chair off to the side, looking at the table thing where you lie down for the cutting. While I was still sitting in chair there, he said, "Why dont you go ahead and take off your shirt, so I can get a look at this thing?" So I took off my shirt.
They have to cut around the tumor 4 millimeters .. in order to insure that they get all the bad stuff.
Then he says, "Why dont you come over here and sit down on this table?"
A little later he said, "Why dont you go ahead and lie down and make yourself comfortable?"
I said, "Oh, you are so smooth .. first it's take-off-your-shirt .. then it's come-sit-over-here .. then it's lie-down .. one little step after another. You guys have good technique."
You could tell that this guy knows what he's doing, and that itself brought a degree of comfort.
It was probably noon when they cut this thing off. Around 5 o'clock that evening, I thought, "Hey, this doesnt feel as bad as I thought it would." But then the numbing started to wear off and it was definitely hurting .. for a good 3 or 4 days.
The hardest thing was just putting on a jacket, because you have to stretch your arm back. Using the underlying chest muscle is no problem, but anything that stretches the skin there is no fun. I could feel the stitches tugging. I seemed to hear a voice saying, "Dude, please dont do that again."
They gave me a stack of bandages and a few tubes of Aquaphor to cover the wound with. Pulling off the bandages is no fun .. let me tell you.
I showered every other day .. because I didnt want to pull off that bandage every day.
I am glad to have this thing gone .. this carcinoma. I am feeling healthier already. It used to burn whenever I put soap on it in the shower. It doesnt burn like that any more.
I was very tired for a few days after the surgery. I'm not sure if this was due to the physical trauma, or the emotional stress of getting cut, or a combination of the two .. but I was feeling very tired during the days afterwards.
I was going to write a little thing that day in order to capture the freshness of the experience .. but I was just feeling too tired.
While he was cutting off the skin, he said, "Has anyone ever told you that you have thick skin on your chest?" (I thought of a lyric by Marshall.)
I said, "I've been called many things .. many nasty things. But thick-skinned is not one of them."
I go later this week to have the stitches removed. It looks like 12 or 13 stitches on the surface (.. with 4 dissolvables underneath.)
When he was doing the dissolvables, I asked him how long they would take for them to dissolve. He said, "I just looked at the packaging today. It said 42 days."
For some reason that cracked me up. Such an exact number. Not 40 days. Not 5-7 weeks. But rather » 42 days. Such a precise number struck me as odd.
When they are cutting off chunks of your flesh, you can find refuge in humor of the most seemingly mundane things.
The worst part was probably the smell of my burning flesh .. as he cauterized the wound. "They need better ventilation in here," I thought.
At one point, his helper-girl said, as she was mopping up my blood, "This is a problem area here."
I didnt say anything, but I couldnt help but smile when I thought, "I told you that I'm a bleeder."
He really put the catuerizer to me at that point. That's when it smelled really bad. He really let me have it then.
This girl who was helping him .. she was very good. I was impressed with her. She knew exactly what she was doing.
I tried not to talk very much .. because I wanted them to be able to focus on the job at hand. But, when I am feeling stressed, then sometimes I use humor as a form of stress relief.
Update » I got the stitches out. Apparently they send off the cut skin to the lab, where they check the perimeter for cancer cells. If the perimeter is free of cancer cells, then they know that they got it all.
He told me that the results came back from the lab and the perimeter had indeed been verified free of cancer cells. But how badly would that suck if they had to cut you open again two weeks later?
» Back when I was first diagnosed, about 2½ years ago, I noticed this skin-thing that appeared on my upper chest, near my collar bone .. about the size of the fingernail on your pinky.
I showed it to all my doctors. They all dismissed it. None of them seemed even a little excited.
That skin-thing went away during treatment. It cleared up completely. It was gone-girl gone.
But then it came back .. a few months after treatment. I showed it to all my doctors again. They all dismissed it.
Now, I dont get many calls .. because my voice does not last very long. And I only call and talk on the phone when I really need to. (I talked on the phone so much today that I can feel my voice is done.)
So last night I was surprised to find two messages on my cell. One was from my doctor, saying that she had received back the results of the biopsy, and that I should call her tomorrow (.. which is today, Friday).
I actually felt better from just listening to her message .. remarkable as that might sound. But I remember thinking a little later, "That cant be a good sign." .. those two calls coming together, on the same day. (Rocket knows the feeling.)
The clinical trials girl was just calling to look into setting up an appointment for my 6-month check-up with my radiation oncologist, which should be sometime next month. She doesnt actually make the appointment herself, but rather coordinates scheduling with oncology.
I wanted to have the results of that biopsy when I called back the clinical trials girl today, but I couldnt get hold of my doctor for the results. Sometimes their phones are all fucked up.
» If the Results are Positive they Usually Want You to Come In
So I just called the clinical trials girl, and told her about my biopsy and how my (local primary care) doctor had called at the close-of-business yesterday and left a message saying only that the results had come back .. but she left no results in her message. She didnt say anything nice like, "Nothing bad."
And the clinical trials girl says, "If the results are positive, then they usually want you to come in."
She called back again later in the evening and we chatted for a while as I sat outside and watched the sun set.
Back when I first started working with her, she told me that there were 30 people who did what she did there at Moores.
Five months ago, she told me that there were 70. Today she said, "We're up over a hundred now."
Back when we were first getting aquainted, she told me, "Immunotherapy is the future of Oncology."
When I was down there with my primary-care doctor, earlier this month, and they were in the process of phoning to get the results of my stomach biopsy .. which took an hour or more for them to get .. I remember that she (my doctor) stuck her head in the room and said, "I'm with another patient right now, but the results of your stomach exam just arrived and your stomach has some problems, but nothing real bad."
Well .. 'nothing real bad' obviously means "no cancer" .. because stomach cancer is real bad.
My point is that she obviously knows how to deliver a calming report when there is one to deliver. But she didnt deliver that with the message that she left last night.
And then I couldnt get ahold of her all day. The phones kept going straight to answering machines. So I found myself looking at another existential no man's land over the weekend.
That is the worst .. not knowing. For a whole freaking weekend? It feels like you are in this no man's land .. from which there is no escape. At least, not until Monday.
When we lived in Hawaii (on Ala Wai blvd, downtown Waikiki, right below the two strippers from Vegas) he drank too much one time and fell asleep in the hot, summer Hawaiian sun .. for 4 hours .. after we hadnt seen the sun for months.
The Dog got burnt so badly that, years later, he still had the outline of a handprint burned into his belly. (Nobody has stories like the Dog.)
"Hey, Dog," I would call out to him across the room above the music playing at a party. "Lift your shirt." .. because I happened to be telling that story to a girl. His handprint was almost like a party-favor. (You cant make up shit like this, folks .. so why even try?)
To this day, the Dog goes to get checked for skin cancer every six months. He said that his dermatologist says he's very lucky that he has never had skin cancer. It must be that good, clean living the life of a leprechaun.
» Happy Valentines day. My old web hosting provider sold their accounts to a new company (Liquid Web, owned by a Dallas-based company). The site was moved (migrated) today to a new server .. which is physically located in Lansing, Michigan, they tell me.
Site Moved to a New Server
I am currently working out the kinks. Some of the images are not loading.
It seems like the older images load fine, but not some of the newer ones.
Support is working on it now. They have already resolved a number of issues.
The Linux permissions on the newer images were set to owner "root". (It's a long story.) But when I downgraded the permissions to non-root, they started serving again.
See, if you create a file (such as an image) or a folder using 'root' permissions, then these files retain their original permissions.
This is a Linux thing and not a Windows thing.
» I went to the hospital today. They told me that I would be conscious for the procedure, but that I wouldnt remember it.
"How can I be conscious and not remember a guy sticking a scope down into my gut?" I thought.
Sure as shit, I remember absolutely nothing. Zero. Not even a tiny bit. What a weird feeling that is.
I am feeling super relaxed right now. They said that it would last for some hours. They made my driver come up and receive the exit instructions, so he could sign me out.
"If we told you," they said to me, "you would probably forget."
This drug that they gave me (via an I-V) contains "amnesia properties". (It has been a long time since I had a chunk of iron set in my arm.)
One of the nurses who I talked to said that she had this very same procedure done last week and that she kept waiting for them to start, when they told her that it was already done.
I honstly thought, before the procedure, that I would certainly remember at least some of it .. because I am such a bad dude, who eats biohazards for breakfast .. and who sips chemo cocktails for lunch. But I dont.
Even now I keep forgetting things so easily. I was just out in the kitchen a little while ago, wondering, "What did I come here for?" I won't be doing any high-level mathematics tonight .. that's for sure.
I remember telling them that I wanted to count backwards from 100 .. to see how far I could get. And they agreed to humor me. But that's the last thing I remember.
I think I remember saying, "One hundred," but that's it. I dont remember counting down. What a weird feeling.
The next thing I remember saying was, "Oh, I am feeling very relaxed right now."
» How do I Know that You Ladies Won't be Calling Me Dirty Names?
"How do I know that you wont be calling me dirty names and making fun of me?" I asked the nurses when they wheeled me in to the room.
One of them was on the phone at the time. She put her hand over the mouthpiece and said, "You dont." (.. and we all had a good laugh.)
[ Update Feb 5, 2017 - Did you happen to see the Aflac commercial that aired during the Super Bowl? This is exactly the theme I was going with here. Where are they getting their ideas? You must admit .. that was a funny commercial. "More funny juice." My brother told me about the time that they took out his tonsils. He said, "Bro, I told them to let me know before they gave me the happy juice .. so I could count backwards from 100, and see how far I could get. All I remember them saying was, 'Okay, you can staaa...' I didnt even make it to the end of the word start." < end update Feb 5, 2017 > ]
My doctor said that I was good at smooth-talking the ladies. "I'm just being honest," I said.
Everybody there was so nice to me today. The ladies at the front desk were downright charming.
One of them came over to the girl who was processing me in and told her to take good care of me because I was a good guy.
And today is the day that Trump got sworn in. It was on all the TV's there. Dozens of crowds were huddled around the various TV's. This was a nice, new modern hospital.
I probably would not have watched so much of it if I didnt have to go to the hospital today, where they had so many TV's everywhere. They even had it on in the little room where they prep'ed me. There was a little TV mounted up in the corner. (I do not watch very much TV any more.)
Look at this lady here, standing between Hillary and W, pretending not to be listening to their conversation with every fiber of her being. You can actually feel her ears straining. Her earring probably contains a Russian microphone, broadcasting directly to the Kremlin. "Did you get that, Yuri?"
These two images are just a fraction of second apart, but they speak volumes about both Hillary and W. Can you hear what they are saying?
Look at where Hillary is in the top photo. Look at her head-space. Compare it to where she goes in the second.
What does W's expression say? What words would you put into his mouth?
Look at what George is doing with his mouth .. particularly in the first image.
Look at how the corners of his mouth turn down so sharply.
As if he is expressing the lovely sentiments that surely reside within him.
What do you think that the sharply down-turned corners of his mouth are saying?
Most interesting of all is the look on Hillary's face in the second image. (The lady behind Hillary .. she reminds me of someone .. tho I cant recall right now in my amnesic state.)
Is this not remarkable footage? Somebody should hire one of those lip-readers and transcribe what they were saying.
Where was Five-Deferment Cheney? Was he there?
From what I overheard a group of family members saying, who were sitting next to me in one of the waiting areas, it seems that their dad, an elderly man, had a heart attack during the initial ceremonies.
Afterwards, they said that they had found something to biopsy. They werent planning to biopsy anything. They werent planning to cut out any chunks of flesh from my stomach. As a cancer survivor, my ears naturally perked up at the sound of the word.
I know a little something about that place between biopsy and diagnosis.
Tho they did not sound too terribly concerned about whatever it was that they found. And I asked no questions. Sometimes it's best not to focus on such things.
I see my primary-care doctor in another week or so in order to review the results. I am still wearing my plastic hospital name tag on my wrist.
If I recall correctly from my previous chunks-of-flesh biopsy .. days #2, 3 and 4 tend to be the worst .. pain-wise, where you can feel where they cut out the chunks of your flesh. Your flesh will be complaining the loudest on those days.
When you arrive at the hospital, everybody asks you the same question » why are you here?
"They're going to stick a scope down into my gut and look around," I said, "I was throwing up blood."
While the girl was processing me in, I was watching the presidential ceremonies on one of the many TV's mounted there. Beautiful TV's with super-vibrant colors that seem to leap off the screens.
It occurred to me, and I said to the girl behind the counter, "You know, I started throwing up blood a few days after the election. And now I am having this procedure on the day of Trump's inauguration."
She looked up from the screen that she'd been studying and said, "That's an interesting coincidence."
I said, "I thought it was an interesting coincidence, myself .. I just didnt know if anybody else would think the same."
I mean, this is not a date that was in my control. They told me where to be, when to be there, and what I would need to bring along with me.
Update - 24 hours post. I can feel the place where they cut out that chunk of my flesh. Feels like somebody stuck me in the side with a red-hot poker.
I'm sure this must be some kind sympathy-pain with the piercing Christ-wound .. in his side. I was walking around the house, clutching my side, wincing with the pain.
It's not too terribly bad, and the cancer-survivor has been to much darker places .. but the pain is coming from the inside, so it naturally feels deeper than your typical external flesh wound. And they dont cut out very much.
Come on, Deep. Talk to me. Tell me sweet nothings. Whisper your seductive secrets into my ear .. your opioid secrets.
Tell me how good you're going to make me feel. Tell me how you're going to take away all my pain. Tell me how you're going to give me sweet respite from this piercing pain in my side.
Oh, I love it when you talk dirty to me like that. You can be such a nasty girl, sometimes .. but you're my nasty girl. You make me feel sexy and desired. Do you really think that we should make a baby? Right now?
There is an alarming aspect to pain. I mean, that is it's job .. to send you a signal and call your attention to the hole in your side.
A quarter of a pill works nicely. A half was too much for me. I am kind of a lightweight with drugs. My mom was also sentitive to drugs.
You are definitely still floating along nicely on cloud nine with those wonderful amnesia drugs that they give you .. during that first day and even into the early parts of the second. (But after that, hoss, you're on your own.)
I would definitely consider becoming intimate with an anesthesiologist. What a skill set they wield. I was in love with my anesthesiologist. We tend to fall in love easier when we are in vulnerable places.
My stomach is definitely feeling weird. I had a little Julian apple pie with some vanilla Haagen Dazs a little while ago. That might not have been such a good idea as I thought it was.
I thought that eating ice cream would feel good because it made me feel better the last time I had chunks of flesh cut out.
I definitely do not want to eat now. My stomach is clearly not a happy camper.
When I woke this morning, I could look around and see a shitload of things that I forget about last night. There were things I forgot to put away, and things I left running. All kinds of things .. much too embarrassing to share. But very telling about my mental state yesterday.
The graph declines rather sharply until the 2-year point .. where it flattens out. It flattens out because people stop dying. (The graph falls over time while people are dying.)
So, it was plain to me .. even during treatment .. that 2-years out is the place where I wanted to be .. where people stop dying. I set it as a goal. A life goal .. that not everybody was as fortunate to reach.
I remember my chemo doctor telling me, "We get 'em back after the 2-year point, sometimes. But, if you make it that far cancer-free, then you're pretty much golden."
She was talking statistics, of course.
Another doctor told me, "Twenty years ago, I would've gave you shit chances."
He did not say "shit chances," but that's exactly what he meant. His point was that the medicine of oncology has improved so much in the last two decades.
Even this particular radiation "sculpting" machine is only a decade old. Before that, there was no sculpting of the radiation.
Radiation is basically super high-energy light that you cannot see. They shot me with very high-energy X-rays. (Traffic lights in San Diego dimmed slightly when they started the radiation machine that they used to shoot me with.)
And this particular type of radiation doesnt stop at your skin (like sunlight does), but rather passes right through into your deep tissue.
But when you wake in the morning, it feels like somebody punched you in the mouth .. right before you run to the bathroom to throw-up the nothing that is in your stomach.
"Ah, what a lovely day this is shaping up to be," you think. "Are they really trying to kill me .. or does it just feel that way?"
My main nurse today, the lady who set my I-V and prepped me .. when she learned that I had been treated at Moores, she asked, "Is it really as impressive there as everybody says it is?"
"Yes," I said, without having to think about it. "And the doctors there are so amazingly smart. You can tell. I had three different doctors just at Moores. You feel like you are in good hands with them. They literally helped save my life."
There is a cathedral aspect to Moores .. and probably to other oncology centers around the nation .. because impressive is often found on the path to awe.
The Moores Cancer center in La Jolla is an impressive place with impressive people doing impressive shit .. such as killing cancer and saving lives.
She was stoked to see my veins. "You have so many beautiful veins," she said, running her finger up and down the length of my forearm, "that it's hard to choose."
"This is my go-to vein right here," I said, "but you choose. You're the expert."
"Let's go with this one right here," she said.
When she was setting the I-V, I thought, "They should be beautiful .. with all the work-outs they've had."
This is a well-run hospital. You can tell that they have their shit together. I would be proud to have the operation of that hospital listed on my resume. I appreciate it when an operation has its shit together and is run well. I'm sure that it's not as easy as they make it look.
At two years out, in addition to managing physical fatigue, where I tire more easily, and then take longer to recover .. one of the main things that I deal with is answering the question » "Am I hungry?"
This question is no longer answered with anything that is intuitively obvious. I sometimes wonder, "Shouldnt I be hungry? Should I eat something?"
Then I will start thinking about the last time I ate, and what I had. If I just eat when I feel like eating, then I lose weight .. because I rarely feel hungry.
I think it tastes yummy, tho I cant be sure, because my tastebuds aint what they were before treatment. This is working well for for me .. along with some milk.
The only thing that I absolutely cannot eat now is raw pineapple. It must be very acidic. I always regret eating raw pineapple. My throat feels seared. I had to take a little pain meds that last time I ate raw pineapple. (That was a long time ago.)
» I went to the doctor today .. one of my doctors, anyway. I have been throwing up blood. If you cough up blood, then they get excited. But if you are merely throwing up blood .. eh, not so much.
Throwing Up Blood
They gave me some purple pills and told me to try to eat more regularly.
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