SitRep Year 3: Can I wrap this up?

When I started down this journey, nearly every doctor I met said something to the effect that I had two months treatment, high cure rate, I’d be fine. Only one – the radiologist (I’m not sure what to call him) basically said something along the lines of “Hah hah…uh. no. More like three years”.

Damn if he wasn’t right. Then again, he’s been the only one on target every time. Hence, when I had a scary and painful episode, back to him I went. I had a cold coming on, probably had one too many beers the night before, so my throat was tender. Got into a coughing fit and found I had trouble swallowing and breathing.

He sized me up, stuck the scope up my nose and down my throat and pronounced “Nope. Looks like good old fashioned radiation damage to me!” But to be save, he ordered a CAT scan and swallow study. For whatever reason, the man is the undisputed heavyweight champ of getting insurance companies to approve and pay for scans. For the first time in three years, I got a total upper body scan.

It all came back clean. Still, he sent me for lymphodema therapy to teach my blown out lymph nodes in my neck to work, followed by physical therapy. You see, radiation tangles up the muscle fibers, and makes the skin and membranes adhere to your muscle. So I had the mother of all knots in my neck. He had told me to do this last year saying if I didn’t do it myself (work the muscle), someone would have to.

I got the same therapist as years ago. She looked me over, prodded a bit, explained what was going on and we’ll have to work that out. And, it’s going to hurt. A lot. The pain, as she digs into that muscle, is eye opening to say the least. But, I feel like a million bucks after.

I’m still dealing with the collateral damage from the whole affair. Physically, I’m getting way better. I exercise every day. I have an oaf of a dog now that compels me to walk him. Otherwise, no work gets done. He’s a big dude, and we do two 1-hour walks a day. I have to say, he’s been very therapeutic.

The Dude

We moved, downsizing in the process. It was a months long process to get to the point where I can get back to some sort of exercise routine. My mouth is still dry, but recently I’ve started to get a lot of the ability to taste back. And the black scarring on my tongue just recently went away. It’s made my mouth way more sensitive to pepper though. Kind of a problem in North Texas. Still can’t stand fast food, which is good.

Emotionally, I’m back on track. My therapy, recovery, becoming empty-nesters, grandparents, buying and selling a house, my thyroid hormonal issues, caused unfathomable stress on me, my wife, and our relationship.

That said, after some pain and discomfort, we’re settling back into a normal life almost like we had before having kids. We plan on buying kayaks, and getting back to biking and scuba together.

One of the things I get asked quite often is “How did you know?”

Well, as I said in the first page of this blog – I felt a lump.  But I also had symptoms for this or that malady that only made sense in retrospect. Continual colds that wouldn’t go away, already crappy stomach getting seemingly worse. Skin rashes on my fingers that would keep coming back. Low testosterone.

You see, when your body is battling cancer, it leaves off other battles, or switches resources. The low-t was vexing. And funny, considering recently some dudes on buzzfeed had their’s tested and mine was considered low, and a problem that had to be fixed with me at 52, with the same numbers as them in their 20s.

So my recommendation is monitor your health, and get serious about it. Many cancers are asymptomatic. Prostate cancer comes to mind. I had a friend that died of that. He only found out when he went to get a blood test for a life insurance policy. And by then it was way too late.  For throat cancer, does that first drink of bourbon on the rocks burn when it didn’t used to? But, meh..second, third, fourth don’t? Maybe look into that.

So there it is. I’m past the period where they say a recurrence happens. Hopefully it’s over for good.

Two years on. SitRep…

It’s been nearly two years since I finished treatment.

I had a scan this month, which was clear. Again. And I’m gearing up to cut loose a slew of my medical entourage. Partly because they provide nearly no value, and partly, thanks to my insurance, I pay more out of pocket. So, I’ll be cutting most of them loose.

What’s funny is that for the second time in a row, I was refused a chest CAT. Made no sense to me, since I’m already in the machine. I had the previous scan at Baylor as well and it followed the same pattern – A call saying we have better alternatives, followed by a refusal for a chest scan. Probably nothing though. I attributed it to bullshit insurance shenanigans. Didn’t care much until I chatted with my ENT oncologist this month.

He said something along the lines of “Yeah,  well when it comes back it doesn’t do it in the neck. It comes back in the chest. Great. So I have that going for me.

My mouth and throat are still real dry. Some things help like Biotene, Xilitabs, whatnot. Curiously, so does beer. Makes things work for awhile. The aftereffect is that you’re more cotten-mouthed than before. I still have taste issues. I can’t taste salty or sweet all that much. Good thing is that most junk foods are still repellent to me as is most fast food. For some curious reason, Chipotle tastes good.

And not craving this food is a really good thing too, since one of the things that happens after bombarding your neck with radiation is that your thyroid sometimes blows out. Mine did. So after a year of a killer metabolism, I have to be careful about my diet. And this created a new wave of misery, since thyroid medicine doesn’t work if you take acid reducers (like I need to). So I have to take my stomach medicine in the afternoon, and I forget. Which sucks. I’ve come to find barfing pure stomach acid really blows out your throat. I’ve also put back 20 of the nearly 70 lbs I lost.

I think it’s the beer. I need to cut back.

My stamina still sucks. I crap out way faster than I used to and I don’t recover near as fast. And I can’t figure if the things that go pear shaped are metabolism, activity, or medical. For instance, during the effort to stabilize my thyroid, the doctor said I should return to one of the blood pressure meds I jettisoned. In Dr. terms, return to a angiotensin II receptor antagonist as opposed to the beta blocker/diuretic mix I settled on. One of the side effects here is joint pain, swelling. So my joints hurt, and my feet swell.

But is that the medicine? or is it I’m at my desk all week, then went out and dug out fence posts with a 30lb digging bar? I’m guessing I did it to myself. Walking cures the swelling. The upside here is I don’t pee as much. Before on a 3 hr drive I’d stop twice. Now, I don’t stop at all. Nor do I get up much at night.

So there it is. One of the lucky, I am. I guess.

Epilogue: How does this story end?

I’m a big fan of the “Deadliest Catch” series on Discovery. Catching crab in the Bearing Straits is a crazy way to make a living, and there are some compelling characters on the show. Sometimes, they offer some really good lines.

For instance, at one point the late Capt. Phil is stuck in the harbor with a busted engine. A busted engine he spent a fortune to rebuild before setting out for the season. During the scene, the mechanic is giving him a litany of what’s wrong and what it’ll cost. At one point, he’s looking at the mechanic gape jawed and says “When does this end?”

For me, it’ll be a long time to an ending. Where I am today is they finally did the right scan (more on that in a bit) and I’m in the See-the-Doctors-every-3 to 6 months mode. It’s frustrating since I have this pet peeve about being treated like an annuity. For instance the other day, my Ear-Nose-Throat guy sized me up in like ten minutes and I was given an appointment for 3 months later and shooed out the door. It was almost not worth the drive downtown. Although he’s a spectacular doctor, and Baylor was one of the best hospitals I dealt with, He didn’t tell me much I haven’t been told already by the gaggle of other doctors I deal with.

There’s another great scene in the show where one of the Northwestern’s crew is talking about the beating they received during the season and says something like “You know, when the next season rolls around, I’ll think ‘Well, that last one wasn’t so bad’ and come right back.” Time heals all wounds, and after awhile the details and pain blur. So it is with me. I have to be reminded how awful I looked and felt. I guess I remember the good. True, I’d hate to do it again. But I met a lot of great people, many of which I consider my friends. I wouldn’t trade that for the world. Also, I continue to be humbled by the amount of support given to both me and my family. I don’t know if that can ever be repaid, unless on a “pay it forward” basis.

As far as health goes, I’m struggling with many things that are common to most cancer treatment, and a few that are particular to my therapy. Atrophy, or it’s after effects is probably the worst. I’m still building stamina, but I’m nowhere near where I used to be. I went to the rec center this morning for the first time in eight months. For each weightlifting exercise, the amount of weight I could handle was half or less of what it once was. And even then, I couldn’t do three sets of ten on all the exercises. I spent half an hour on the elliptical, but as with weights, it was half speed, half incline/resistance. I still can’t taste much, so eating can be a chore. I’ve learned that the glass of wine, orange juice, or that citrus fruit isn’t worth the days of scratchiness. And I have to be super careful about mouth hygiene. I even have a set of trays and fluoride I have to use every night. Nothing in my mouth will heal like it used to, probably for years I’m told. Hence the reason for the dentist visit when all this started.

Turns out the last scan, the right one, turned out totally clear. My doctor said that a first scan being clear is extremely rare, he almost never sees it. Usually, he said, they hedge and say this or that area is “of interest” or “possible cancer”. He was prepping us for this news for months. I had been dreading this visit. The last thing I’d want in the world is to endure another round of chemo and radiation.

That office visit and news left me feeling great, in the best mood I’d been in years.

Euphoric, I would say.

Tips for surviving cancer therapy

“Hey! Look at you! You made it!. Got through all your treatments, didn’t end up having to go to the hospital. You’re looking good!”

So said one of my doctors on a follow up visit a few months after therapy. I had no idea that it was special not having to check into the hospital or getting too sick to finish. But apparently that’s the exception rather than the rule.

That I made it through as well as I did, better than some of my cohorts – and keep in mind at this point I don’t know if I’m truly done, I’d like to attribute to deeper faith, tougher mind-set, maybe my Irish potato-famine metabolism. But in reality, I was probably because I started off way fatter than the others. On the other hand, we managed to prevail with a rather short learning curve. Along the way, I learned a few things that I’ll happily pass on;

1. That extra 20-30 lbs you’re carrying isn’t going to kill you. During therapy, it could make your life easier. The typical weight loss for the kind of treatment I went through is around 50 lbs. I was a good 70 in the plus column. Others who were at 180 drifted to a abnormally low 120, and had issues eating enough to put any back.

2. If you’re a guy,  get a wife. A good one. I can’t stress enough how nice it was to have a spouse able to deal with the doctors offices, insurance, and me not wanting to do things. It was horrifically stressful on my wife, but she handled it with grace. I can’t imagine how hard it would be to deal with bullshit (Excuse the french) when feeling that bad. In all likelihood, I’d have never eaten, or fed myself properly. It would have been really tough to get myself to treatment towards the end.

3. Get a binder and save everything – Test results, insurance letters, prescriptions, and the general typhoon of paperwork that each visit will generate. Keep a chart in it of all the medication taken. If and when you have to see a different doctor, having that information on hand is invaluable. You can ask for any test results and even your doctors notes. Keep it all, you’ll need it. In 6 months, we filled two 3″ binders.

4. Speaking of the med chart, keep a spreadsheet where you can record when you’ve taken what medicine. If you keel over and have to be carried to the hospital, that information will be useful. You’ll be taking a battery of pills. I think I had half a dozen different ones to track. I found it a useful tool to simply track what I took, when, and what was coming up.

5. Chat with the nurses, especially the chemo center ones. Ask plenty of questions. They see cancer all day, and usually have great tips that are a huge help.

6. After treatment, you may be really dehydrated and not be able to drink enough to get to where you need to be. Have the doctor set you up with IV hydration. The chemo (infusion) center does this. You can also get home care for the weekends. They show up, hook up your IV to your port, and leave. (My wife unplugged it when it was done).

7. Don’t get overcome by events. Keep control of the process. If something is going on ask why. In the beginning I was being sent to appointments that were made for me by my two doctor’s staff. While this can be a huge benefit, keep in mind that if you don’t have the doctor you need (Like a digestive doctor for a feeding tube) they’ll find one, Usually a colleague, hopefully on your plan. Some that I didn’t know, like the vascular surgeons for the port, weren’t all that great. The guy putting it in did a great job, with local anesthesia. The guy that took it out put me to sleep and made an ugly scar.

8. I don’t think I met one anesthesiologist that was on my insurance plan. That’s a huge issue, since for my plan they pay 80% of their rates, which the doctor will happily take. And then bill you for the full retail, minus what he got. I’m at the point that I flat out tell them to not send me a bill, it won’t be paid, before they even start. That sounds cruel, or mean, but keep in mind, they’ve all made towards a grand for less than an hours work, which for the most part was shooting proponol in your veins and making sure you don’t croak for the short procedure. They know the drill. The insurance pays “X”, Don’t expect “X+Y”

Definitely ask as many questions as possible. I was lucky to have two doctors, both good, but one that was exceptional that was very clear and open about what was going to happen, how long it would take, and what I could expect for the long term.

Where am I today?

Months after this ordeal I’m still getting used to the “New Me”.

Like I said on the last post, every few weeks or so something starts working or working better. I still can’t taste anywhere near like before. For instance, I can’t taste sweet. But to some extent, I can taste salty, bitter, savory. Earlier, I said I could taste chocolate. But that’s if it actually has some cocoa in it. Remember, if I can’t taste it I focus on texture, which is weird. It makes you notice the bad or fake parts in food.

Take, for instance, Hershey’s chocolate. Turns out the sweetness is masking something nefarious. In this case, it’s the vegetable oil they use in place of the butter fat that should be there. So what I taste, is a weird waxy texture and vegetable oil with chocolate overtones. A friend gave us a chocolate cream pie. Looked awesome. My kids loved it. I could only taste crisco and salt, a huge letdown.

Turns out the more processed food is, the less of it I can taste. Which is probably a good thing in the long run. Things that are good for me, like seafood and veggies (slightly cooked) I can taste. Some bad things too, like fatty meats like pork shoulder or brisket. Lean chicken, pork, or beef I just get a texture I described to a group of people the other day as ‘wet kitty litter’. About the only starch I can handle these days is potato.

Since I have no saliva to speak of, I have to eat smaller pieces with some sort of drink. So it takes me longer to eat than everyone else. Then again, there is something to the idea of taking your time. Your hunger abates, and you get sick of eating long before your food is gone. Wine was another funny discovery. A fine wine from a new bottle tastes to me like MD2020 (a fine bum wine, for those who don’t know) left in the sun for a few days. Probably a good thing as well, alcohol burns my throat. That may change as it rebuilds. But for now, it’s best avoided. Actually, I was told point blank not to drink it the other day.

All this poses a huge problem for recovery. At one point one of my doctors said I should be taking in about 3000 calories a day. Not unlike with a burn victim, my body would need all that to heal. Given gimpy taste buds, and having to avoid dairy (Generates mucus and gunk), and bread (yeast) it’s a tough number to hit. These days if I get over 1500 I’ve had a good day. Still, my weight is holding steady.

Losing the weight was a gift. As my activity increases, and my intake stays the same, I’ll trim down to a healthy weight. I’m only 15lbs from my ideal if I were to believe the body mass machine in my doctors office.

Slowly and surely I’m building muscle mass and endurance. I’m still not anywhere close to normal there. And I go back to activities that were normal for me before, I find the weirdest things happen. I started back playing bass at church. I expected toting my gear would be a strain. What I didn’t expect is fatigue in my hands, or that I’d miss my callouses so much. We went to a nursing home to sing Christmas carols and I brought my acoustic guitar. An hour later, if that, my left hand was destroyed as if I’d never picked up an instrument in my life. That’s abating, but not fast enough for me.

So did it work, Medically? Am I cured?

Who the hell knows.

There’s a circular firing squad of incompetence between both doctors offices, the company that my insurance provider outsources approvals for scans, and me, who is determined to stick in a pet scan while my out of pocket is still red-lined.

To be fair, the radiology practice had a huge shakeup from what best is described as a tragedy, followed by some unfortunate collateral damage. The remaining staff is still very busy, and is having issues dealing with insurance shenanigans. The other doctors office staff has one nurse that’s fairly sharp, and an assistant I’d just as soon never see. They started this silliness by not checking with the radiology shop and started ordering scans like a bull in a china shop until something worked.

Every time a scan is scheduled, they schedule a follow up to discuss the results. I went in there for the third follow up in a month without an associated scan the other day. Basically, I was there for no reason. Their nurse was out so the other doctor’s nurse helped out by getting me in the office, doing the vitals and interview thing. A few minutes later, she comes back with the lightweight assistant who asked if I was eating yet and did I still have pain. This is the third useless visit to them in a month where I’ve been almost back to normal. Words failed me. I simply said “No, not for awhile” and left it at that.

They managed to get two scans approved, neither of which is important to me, and neither is of where the cancer was. So I know for sure it’s nowhere else. But I knew that going in. What I don’t know, is where I’m at. We’ll see if it happens.

Climbing the hill

After I started eating again, things moved pretty quickly. It seemed like only three weeks or so and all of a sudden I noticed the pain was gone. There was probably a good reason for this, which I’ll get into in a bit.

After a month I went back to work. Probably too early since I’d get fatigued and have to take a nap or two. As I  mentioned earlier, I work at home so it wasn’t all that big a deal. I did have to attend a company event in our area which was a bit of a challenge. It included meals, and I still had pain (at the time) and zero taste. Still, It worked out OK. By the weekend though, I was wiped out.

A few weeks after I started eating, it was deemed I no longer needed the tube. (Actually, I deemed it). So off to my digestive doctor I went. He said they normally just handle that in the office. But when I got there, he started hedging, saying we could reschedule and do it in the hospital with anesthesia. After all, there would be some pain. There’s a surprise. I opted to gut it out. So I laid down. He said “Ready?”. I said “Go for it.” And….

POP!

He jerked that thing out like a dandelion on a lawn. I was cracking up so much about the huge pop sound it made I really didn’t notice the pain, which wasn’t much. What a relief.

One of the things they didn’t mention when I started this trip was that I’d have to be weaned off the battery of medication I was taking during treatment. Most of this, like the anti-nausea stuff you can just stop. One of the things you can’t is the opiate based pain patches. And I was still on the large dose from when I was heavier, which was causing issues. Like, every three days when it wore off, I’d feel miserable and usually retch. My wife tells me I’d stop breathing at night as well.

And so I started the process of lowering the dosage every few weeks. About halfway there, I got a good taste of what misery withdrawal is. I was feeling pretty good for weeks, and all of a sudden one Saturday I started feeling really fatigued. By Sunday I was a mess. It’s hard to describe how awful I felt. Think of the worse hangover you’ve had, with the flu. I popped some hydrocodone and in a few hours the ship righted enough to take a shower. That’s when I noticed that my fentanyl patch had gone missing. After that, I made sure it was in a place that I could both see and feel.

At some point, the patch dosage is too low for your body to feel. For me, that was the second to lowest dose. That step was tough, but not as bad as the big dose wearing off. I spent a week or so needing naps in the afternoon. It was also when I started noticing my throat being scratchy after eating rougher food.

And body aches.

They were non existent on the patch. Now I was finding that I paid dearly for over-doing things. I found that laying around for months had reduced my muscle mass quite a bit. I found normal tasks would exhaust me and I’d spend the next day on the couch. One of my doctors said – ‘baby steps’, start off real slow. Hard to do when the house needs fixing from stuff I’d ignored all summer. Like the bricks on the chimney. But he’s right. Over doing it then having to recover for a few days is not the way to do things.

It’s a long, uphill climb that’s getting easier by the day.  Every few weeks I notice something starts working, or working better. As I went along, I kept thinking of what an older priest once said on a retreat – “At my age, if it doesn’t hurt, it’s not working.”

I guess the word for the fall is “patience”.

Weeks 7-10. Devastation.

When I started treatment, my radiation doctor said I’d have a three week “honeymoon” where I’d feel OK, like nothing was going on. But I’d pay for that in spades when treatment finished.

He wasn’t kidding.

I started right before the July 4th holiday, but the radiation folks didn’t have what they needed before the holiday. So they did the final prep the Monday after. That put me a day off, starting on a Tuesday, making a Monday my last day for treatment.

I barely made it.

Towards the end, my morning sickness would stretch into my treatment time. The look on the tech’s faces when I asked if anyone had puked in the mask during treatment was priceless. Apparently, they never considered it. Keep in mind, I’m strapped to the table with a plastic mask covering my head, face, and shoulders. It was porous, but still, puking in it would have been bad. I’d have to wave my hands, holler best I could, and hope they could stop everything and get me out before I choked. Luckily, it never happened.

My chemo mask. You get to keep them.

That said, the seven week beatdown of chemo and radiation left me physically and emotionally shattered. I was over 50 lbs lighter, my neck was red from radiation, my throat was sore as hell – pain medication notwithstanding. And I was ghost white from chemo. Emotionally, I was about as brittle as a human can get. At one point my wife asked me a battery of simple questions and I broke. One of my sister-in-laws came over, and gave me a foot massage. I started bubbling up right after she started. I simply couldn’t wrap my head around someone doing something so nice for someone so wretched.

And amount of crap, gunk, and dead cells I was rinsing out of my mouth was horrific. Eating pretty much sucked, so I stopped eating, preferring to inject Boost into my stomach tube.

At this point, they sent me back to the chemo center every day for saline hydration. Turns out, it’s really hard to keep hydrated by drinking water after treatment. Even if you could stomach enough, your guts are so wrecked by chemo you wouldn’t absorb all the water you need. Hydration worked reasonably well, and I’d end up feeling better after it was over.

During this whole process I met others going through the same treatment. One or two looked far better than me. And generally, they started eating at about three weeks. A month after I stopped treatment, my throat was way too sore so I was still using the feeding tube. This was really non-nonsensical looking back since Boost is pretty easy on the throat and I could drink water, even as little as I did.

One morning one of my favorite nurses at the infusion center started chatting with me as usual, and the conversation went something like this;

“So are you eating now” No. I’m still using the tube.
“Why aren’t you eating?” My throat hurts too much. I’m waiting for it to stop hurting before I try eating.
“That won’t happen before you lose the ability to swallow”

Then she explained that my throat needed to be exercised, and toughened up by having food down it. Things weren’t going to magically get better for me on their own. I’d have to suck it up and start eating before I got better.

Now at this point there was little more I hated than the tube sticking out of my guts. It was an irritation since the day it went in. It never sealed right and always seemed to ooze really gross stuff from around it’s hole. I was keen to get it out and also terrified that my throat would stop working and I’d be stuck with it for life.

That night, I started eating. A little at first – one meal. Then over the next days two, then three.

In a few days, my energy level skyrocketed and I found myself on the way back.