Weeks 5-7. The Slog.

I really meant to post more during this sad saga, but somewhere after the first month fatigue, apathy, pain, and a complete loss of my sense of humor happened.

My days consisted of getting up and going to treatment. Each week consisted of daily radiation, one day of chemo and two doctor visits somewhere in between. Through all that, I kept working. As I settled into a routine, angels and devils started appearing. Most of the medical staff were unbelievably cool, helpful, and professional. Some though, were capable of some unthinking cruelty. Fortunately, my wife dealt with them not unlike a honey badger.

I’ll give you an example. I didn’t have classic chemo nausea. I had plenty of medication to stop that. Chemo was Monday. By Wednesday evening, I’d feel a little queezy. Pop a pill, and it would vanish. What I had was what I’d call “Situational Retching”. Usually when I woke up, my mouth and throat would gum up. If I didn’t clear it right, I’d dry heave. I’d get up from the can to spit some goop into the toilet, and get a whiff of a fart I cut, and heave. I’d gargle with a salt water/baking soda mix, swallow some, and retch.

When called about this, one of the medical assistants blew off my wife saying “Take him to the hospital”. Sure. Go through the time and expense for a hospital visit that will lead nowhere. Luckily, with two doctors there was an automatic second opinion on tap if you couldn’t reach their actual nurse. One of the nurses, the good one as it turns out, gave my wife a metric on when to worry about a hospital trip.

When asked about this and the pain, my chemo doc exclaimed¬† “No, no , no. He (the radiation doc) is giving you the pain, I’m giving you the nausea….and you know, I’m not hitting you half as hard as I hit those geezers with prostrate cancer.”

The end of that story is I got an additional battery of anti-nausea meds to choose from.

Weeks 3&4; The wheels fall off and the dragon sings

When I started treatment, nearly every doc said that week three, maybe four, was things would start going pear shaped. The wheels of the car would wobble and fall off. Nice analogy saying basically, the hardcore pain was due. Honestly I felt lucky and figured it would happen more towards the 4th week side.

In the run-up for this I was getting two pieces of advice. The first was to start the pain medication now, let my body get used to them before the pain hit. This would make less medicine necessary, and generally have less pain altogether. The other school of though was more along my thinking. I’d be able to see the hardcore pain coming in plenty of time and fend it off. Up until that time I’d had random aches and pains pop up. But nothing Tylenol didn’t handle. And while my throat was dry. It wasn’t overly sore.

Until the first day of week three. Over the weekend, I came to the realization that unlike the last two weeks, things we going south so I tucked into the pain patches. Slapped one on Sunday and it appeared things were working. But they really weren’t. I was always a half day behind the pain curve. I had to ramp up much faster than I was expecting. And there were periods where my dose was too low or the patches were exhausted and useless.

It’s taken well into week 5 to get a handle on the timing to manage all this. But now if the dragon isn’t outright singing, it’s spending more time than not humming, which puts me at a tolerable set point.

I’m probably more unsettled about the Chemo’s cumulative effects than pain now. First few weeks it was nothing. Maybe a little dizziness by Wednesday, then it goes away. Week four it’s more like Saturday before I’m not groping for the anti-nausea pills.

I’ve been procrastinating about writing with all this activity. I’m actually headed into the last two weeks. And luckily no worse for wear than I was in week four.

Week 2; The wheels on the taste buds don’t go round. They wobble and fall off.

I heard a term that resonated with me awhile back;

Infantile Omnipotence.

It basically means, since something isn’t happening to me or anyone I know, then it won’t happen to me.

I don’t have that. I know I’m in for a difficult journey, but I’m getting a tough time wrapping my head around logistics and timing. I’m certain I’ll be riding the pain train eventually. But it’s not happening now. This creates a gulf between what’s the best thing to grease the skids for healing and my reality. For instance, someone suggested I take off and only concentrate on “Healing”. I simply can’t take three months off to keep my head straight and concentrate solely on therapy. I cannot “not” work.

And what would such days off look like? Given what I do for a living, a large part of that time off would be doing exactly what I do all day. I work on computers and software (in a nutshell). Sometimes, my days off look just like work. The only difference being what’s on the screen. Since my company is being very accommodating, why not work until I can’t?

One of the things that’s been really heartwarming is the flood of support we’ve been getting from our friends. They work really hard on meals that they bring by. However, right on queue this week, my mouth got drier, and the wheels fell off my taste buds. Given how much I like to cook and eat, this is traumatic. They work so hard, and to me just about everything tastes like dog food boiled in Vaseline. I can sense texture, but can only barely taste what I’m eating. Basically, my brain is plugging in what I smell to what I should taste. Doesn’t work so well. I had a couple hot dogs today that may as well have been dried painters caulk wrapped in a sponge.

Awhile back a friend of mine hyped me to the book “Omnivore’s Dilemma”. A pretty interesting tome, cut into three sections. The first of which was about how pervasive corn is in our diet. It seems “Big Corn” is ruining things. I will argue that if they dropped tariffs for imported sugar, high fructose corn syrup would probably vanish. But on the other hand, he had an excellent point about beef. Corn fed beef, specifically. Cows don’t generally eat corn, they eat grasses. But we feed them corn, then have to drug them so they can cope. By the way, one of the big differences in Wagu or Kobe is that the cows are fed grasses. Those of you that have had them know the taste difference is staggering. So, he had an exercise where the next time you eat a burger contemplate what you taste. Savor it, if you will. Damn if he wasn’t right. You taste the bun, onions, tomato, lettuce, cheese, mustard, and ketchup. Far away in the background is something like beef. The experience ruined fast food burgers for me.

It’s something I put into play every time I eat – or used to. Try this with Bread. Contemplate if there were zero taste, only texture, how appetizing would it be? I can tell you, chewed with what little saliva I produce gives the feeling of a mouthful of joint compound.

Weirdly enough, What I can taste most is chocolate and vanilla. So all is not lost.

I’m down 10 pounds already. I know there’ll be a discussion about that in the very near future. My reasoning? No Booze, No bread, no fast food of any kind. So I don’t find that astonishing.

Garden of the Skeltons

Watch what you wish for, you might get it.

Last post I was itching to get this train rolling. Now, the train has left the station and is picking up steam.

Let’s start with chemo, which was the first thing this week. I knew the infusion center was a nice place. And so it is; recliners, TV, wireless, amazing staff. My first appointment it was full of very old, and very battle worn people. Many bald, most skeleton thin, all sporting a disturbing grey pallor. One old woman had been at this off and on for an astonishing seven years. Later, younger people came in. Mostly guys, and very much the walking wounded. Where the older people were alert and reasonably cheerful, the younger appeared to be suffering immensely. One in particular appeared to have his nausea inhibitors fail. Loudly.

I felt very out of place. The noob, so to speak.

My regimen appears to come in huge bags. Like half liter bags, two of which are simply hydration. So after about an hour, you have the same effect as sitting there swilling 3.2 beer. Bursting bladder, no buzz, no joy, no taste. It came with a blast of anti-nausea medication, which appeared to work flawlessly. So far.

Included in the fun was huge bag of steroids. Where one of the grey people got a small syringe, I got what appeared to be a stiff double shot – a good three finger goblet full. I was kind of liking the idea of massive weight loss. I want and can use that. But with my luck, the steroids will give me the same gut and bitch-tits as the guy in “Fight Club”. The end effect of this was an astonishing burst of energy and productivity that lasted well into the evening. I also got sort of a weird, vague dizziness. Nothing that I would tag as nausea. I know from nausea. I’ve had benders go horribly wrong to where I’ve been driving the porcelain bus all night. I have drugs for that which take the dizziness away. We’ll see how well they work.

Radiation was yet another thing. A simple click into place, check the sights, and fire away. It’s maybe twenty minutes each day. About the only reaction so far is it made my neck irritated and swollen. And when I probed it, like an idiot, it was really sore – only on the inside. Granted this is only the start.

I’m in my honeymoon period.

 

Starting the marathon with a rock in my shoe.

After I was diagnosed with Cancer, it was like I was sucked into a huge machine. Appointments were being made, procedures and tests happening. Unlike with the vets sucked into the maw of the VA scandal, I haven’t waited a minute for anything.

There’s a cost for that, however, as the insurance statements arrive, signalling the start of the “Who’s paying for this in the long run” kabuki dance. Don’t get me wrong, I have fantastic doctors. The two hospitals where I’ve had tests and procedures are clean, accessible, and welcoming. The workers, to a person, competent, efficient, caring. I haven’t met a soul that’s gotten on my nerves – other than the one appointment lady from my earlier post. However, we’ve yet to meet.

One of the best pieces of advice that we’ve gotten is to start a binder, and take notes. There’s a ton of information to absorb. And it turns out, when we looked at my wife’s notes we had forgotten a pretty important piece of what one of the doctors said when it came to nutrition boosters. Basically, the stuff he was recommending isn’t found at the local Kroger. Same brand, not same type. We’ll get back to that in a moment.

A power port

Chemo and Radiation doesn’t happen like a tooth extraction, or other procedure. There’s a lot of planning and some pieces parts that have to be in place before everything starts. First is, for Chemo they install a “Port”. ¬†This device is essentially a docking station for Chemo. It prevents the nurses from having to find a vein for an IV every time. Just like with a junkie, too many hits on a vein with an IV needle and it collapses, making it unusable. By using the port, access is always there and working painlessly. More or less.

The picture doesn’t do it justice. In reality, it’s under the skin. (Google it!). But that line travels under your skin, over your collarbone, and into your jugular. It’s as uncomfortable as it looks. If you turn suddenly, or roll on that side when sleeping, you feel it like the reaper probing your neck.

The next thing that had to be installed was a feeding tube. Since my head will be blasted with radiation, my throat will be sore. In addition, I’ll lose my appetite and won’t want to eat as many calories as I will apparently need. There’s a small chance, also, that things could go pear shaped and I can’t eat at all. This is a preventative step – it’s there if I need it. The thinking here is that if the time came during this process where I needed it, it would be more painful, and the learning curve using it would interfere.

Feeding tube. Not mine.

That made sense. Now that I’ve been through it, if I weren’t feeling well, this process would be a suck-factor accelerator.

And, it too is every bit as uncomfortable as it looks. Sore isn’t a good description of the first days after it’s install. And since it tethers your stomach, you feel every move. It’s especially weird when you wake up hungry. That growling stomach moves the tube. And, if it’s on the opposite side of your port, you can pretty much give up sleeping on anything but your back.

Another issue with a feeding tube, at least mine, is that it made an already sensitive stomach much more so. So now even mildly acidic or spicy food makes my guts feel like I went on a night long tequila and Mexican food binge. But this is where the nutrition boosters come in. They get shot into this port as well as liquefied real food. Yummy. Stomach issues without actually tasting the food, which I’m told will taste like eating rust soon enough.

The hospital called with two more appointments for me. Two ancillary things I remember chatting to the doctor (couldn’t find the notes), but not “must do” things as much as “good idea” things. I put the kiebash on those. Each one of these preparatory steps has a cost, and a benefit. The cost isn’t only in money, but time, pain, and spirit as well. Now I’m of a mood to get this pain train rolling, I don’t need to decide if I like the color of the paper in it’s bathrooms, so to speak. I get all these steps. Many have made sense. But I’m in worse mood, I’m uncomfortable, and tired. This race hasn’t started for real. And although I’ve managed to dig out the rock in my shoe, I’m starting out in worse shape than I could be, at least in my head.

So we’ll see. Since there was a bit of a delay this week, the good ship Misery will leave port first thing Monday.

There will be no Euphoria for you.

In the movie “My big fat Greek wedding”, Aunt Voula corners the prospective in-laws and starts jabbering about a lump. “All my life, I’ve had a lump…always a lump”. She then goes on, in TMI fashion, to tell them they found bits and pieces of her twin sister when they removed it.

That’s not my story. I haven’t always had a lump. One sort of appeared a few months ago and refused to go away. After a needle biopsy, it was found to be cancerous. That’s when the fun began.

My region is blessed with an amazing array of medical facilities. And each doctor I’ve met has been better than the last. But along the way, there’s too many funny stories not to pass on.

For instance, one doctor saying it would be best for me to put on another 30 lbs or so before starting therapy. I, no lightweight, pointed out I had 80-100 lbs to give to the cause and should be fine. Still, what he said had merit. I’ll lose a crap-lot of weight regardless, and that buffer would leave me with a better energy level. I get that. But that extra tonnage would affect a number of other systems that I’ll also need working – like cardio-vascular, and digestive to name a couple. I’ve approached that weight before, and it’s deeply uncomfortable, especially in the Texas heat.

Today I finally got a call from the chemo people. In true Texas form, sounding like Flo from the TV series “Alice”, she started the call “Well, I understand you’re a little agitated with us…”. She said that right after introducing herself. I’m sure when we meet, I’ll have one of my patented “Knuckles on the Desk” moments. I have cancer. No shit I’m agitated. And my already short fuse is practically non-existent. And I’m sorry my main oncologist had to call her boss, so her boss yelled at her, but it’s my oncologist’s office she was supposed to create an appointment with, on my behalf. She didn’t. Nor did she call them back. Not even after the Nurse walked my paperwork to their office. Laziness is something endemic with administration types around here. I’ll probably end up telling her that her life isn’t my fault.

In Dante’s Inferno, Virgil is sent to Dante to guide him through hell. In each level, or circle, he explains who is there any why. Virgil, by and large does not exist when you have Cancer, I’ve come to find. True, they all communicate, but mostly at their level. So what you find is the original doc will say – oh, seven weeks of therapy, good cure rate. A few levels down, they tell you that it’s seven weeks submerged in boiling tar, oh by the way. What I need is a Virgil. Although my main doc is pretty close.

Every week he has a great line that sticks with me. This week’s was; “You know, a lot of people worry about getting addicted to pain killers during treatment. That’s not really an issue. You see, the way addiction works, you need euphoria. There’ll be no euphoria for you.”

Hence the name. I’ll post when I can as long as I can.