Here we go again!


Just got the news—another TACE! And this time, maybe they will actually be able to give me some general anesthesia! All that “Exhale and…don’t breathe….don’t breathe…don’t breathe…don’t breathe” stuff! I was turning blue! “Sometimes, they forget,” admitted Christie, the leggy nurse-practitioner who spoke with me afterwards.

The good thing about general anesthesia is that I don’t have to struggle to restrain from breathing. They can just stop that hissy-wheezy pump-air-into-my-lungs thing for as long as they like, and I won’t feel any distress at all!

Oh, wait…. “Sometimes they forget.” Maybe I should draw a big sign on my leg saying: “Remember: I WILL DIE WITHOUT OXYGEN! Turn on the hissy-wheezy thing!”

Other bad things about TACE:

  • They have to shave your groin on one side. I’m not a “Oh, no! My bikini area is an absolute jungle! Better get a wax” kind of guy.
  • Last time I got a bruise the size of Rhode Island. I suppose when someone punches a hole in your femoral artery, that’s the best you can expect.
  • Nursing assistants who look straight out of high school will be inspecting your ‘private area.’ I guess they have to make sure all my male parts are still there. “Sometimes they forget…”
  • I’ll have to spend the night in UAB Hospital, stuck in bed with nurses waking me up all night to make sure I’m still alive. And there was that bitchy male nurse who didn’t like me. The last person you’d want ramming a catheter up your ding-a-ling so of course, that’s just what he did. Murphy’s Law, more reliable than the Law of Gravity.

But on the plus side:

  • UAB Hospital is kind of nice. Most of the staff are perky and so friendly! The rooms are pleasant. And instead of having to eat whatever a nurse brings you on a tray, you can order your bland, tasteless hospital food from Room Service. And insurance pays for it all! “I’ll have the ratatouille niçoise, s’il vous plaît!”
  • Oh, and I almost forgot: This might actually get rid of that blasted tumor once and for all!

Keep those cards and letters coming, and keep me in your prayers. Or if you prefer, conduct a bizarre, orgiastic Wiccan ritual to send the Goddess’ healing power my way; I’m flexible.

Till next time, “May all your showers be golden!”

The Radiologist Sees All, Knows All

A CT Scanner.
Well, I went back to Kirklin Clinic for my 3-month follow-up, and dang if that darned tumor isn’t growing again. TACE didn’t stop it, ablation didn’t stop it. I think this time they are going to try hoodoo to get rid of it. Whatever they do, I hope they do it quickly. My insurance deductible and max out-of-pocket are paid through July, and for good measure I’ve persuaded the hospital to give me a break and consider me a charity case. (If I’m not, nobody is.) Without that, every CT scan costs me $1200, even with insurance.

By the way, does anyone know how to get rid of visceral fat? Everything I can find about it says you have to exercise. Isn’t there a lazy way to do it? At the clinic, I trudged up four flights of stairs as exercise. In high school, I would race up four flights of stairs two steps at a time. Those days are long gone, alas. Just 20 years ago I walked 2 miles home from work every night without a second thought. Now the 1-mile stroll to the nearest Walmart leaves me gasping for breath. But I have to get rid of that fat. Wikipedia saith that adipose tissue is practically an endocrine gland, producing …estradiol! No wonder my nipples are so sore.

Well, that nice nurse-practitioner is taking my case before the Tumor Board day after tomorrow, and they’ll decide what to do with it. My money’s on hoodoo. Anoint a candle for me. Write “Roy’s Tumor” on a piece of paper and burn it. Or put it in a bottle and throw it over your shoulder into a stream, then walk away without looking back.

Until next time, stay healthy and don’t commit any capital crimes.

Cancer free for now….

Well, after the TACE, they had to do ablation on me to get the last sliver. I hope I don’t need many more of those–they punched me full of holes! I’ll find out tomorrow–it’s CT time again. Still, the only long-term cure will come from a liver transplant. My insurance will cover most of the cost, but a little chunk of $300K is still a lot for a guy who makes $11 an hour. My GoFundMe page has earned me all of $200. Why do babies get all the money? Old people need it too!
Dear old Mom.
But the main problem with a liver transplant is dear old Mom. She’s almost 89 and can’t much get around any more. I live in her house, driving her to appointments, doing all the shopping, cooking and washing of dishes. (Other than that I agree with Quentin Crisp, who said, “There is no need to do any housework at all. After the first four years the dirt doesn’t get any worse.”) A liver transplant would have me staying for several weeks in Birmingham, being taken to UAB frequently to get my anti-rejection cocktail tweaked. Then another 3 months to recuperate, during which I am not allowed to drive. Who’ll look after the two of us then? I have some cousins nearby, but they have other things to do. My nearest sibling is 600 miles away. Friends? We don’t get out much. I can’t afford to hire someone to do everything for us. It just seems impossible.

Then again, people manage to do things that seem impossible every day. If any of my beautiful readers think their experiences would be of use, please comment!

My first taste of TACE (Trans-arterial Chemoembolisation)

August 25, 2016
UAB Hospital
Well, kids, today I made spent my first night in a hospital. Yesterday, they punched a hole in my femoral artery to run a little tube up into my liver and inject anti-cancer drugs straight into my tumor. The chemo is coated onto particles that block the artery so that the chemo won’t be washed away and the tumor will starve for blood. It’s the only way to prolong my life until I can get that darned liver transplant. And after that a night in the hospital ‘for observation.’

It was cool. An emergency came up that stole my anesthesiologist, so I was awake for the whole thing. They spent a lot of time trying to figure out where a mystery shadow on the x-ray was coming from (the whole this is guided by CT). It turned out to be a piece of adhesive tape. There was disco music coming from the speakers in the ceiling. And they were always asking me to “Breathe in, breath ALL the way out. Don’t breath…don’t breathe…don’t breathe…don’t breathe. Now you can breathe.” When you inhale, of course, your diaphragm pushes your liver down. I guess asking you to empty your lungs gets more reproducible results than asking you to take a deep breath and hold it. The radiology tech told me afterwards that I was ‘the best breath holder’ she’d ever seen. I bet she says that to all the pretty boys!

Of course, when you’re worried about surviving cancer, you get what you need and worry about the cost later. But as soon as I got home, I got a bill for the CT scan I got last month: $2,623.28! And I might still get more bills from physicians, etc. Damn! The $1,200 bill I got for the CT scan I got here in Winfield broke me. I had to get a loan and now my credit score is in the sewer. I’m busted! And that was just for a CT scan. What will they charge for the outpatient surgery I had today?

What a choice! Get treatment I can’t afford at a leading facility which is especially famous for its expertise with livers–the first liver transplant in Alabama was done there!–or get poked by medical students at some crummy public hospital. I used to work at Charity Hospital in New Orleans. What a roach motel! Indifferent clerks, half-baked doctors. I once spent an entire shift trying to get a bed for a man with a broken leg that was dripping pus. No one would take him because the admit order didn’t specify the Infected Orthopedics Ward, and the other Orthopedics ward wouldn’t take him. And no doctor who would answer his pages would fix it; they were all interns who were probably that a real doctor would yell at them for changing their order.

Now, I know you folks have troubles of your own, but I’m desperate! I’m doing everything I can to cut expenses to the bone. I’m even going to sell my beloved ’93 Cadillac Fleetwood Brougham! But if you can spare even a little money to help me out, please click the link to my FundMe page. I’ll dance at your wedding!

The story up to here….

By BruceBlaus (Own work) [CC BY-SA 4.0], via Wikimedia Commons

It all started innocently enough. I was working for a company that made fiberglass bathtubs in beautiful Hamilton, AL (world-famous for absolutely nothing!) and one day they announced a blood drive. A blood drive? thought I, I love blood drives!

And so I did. A few minutes off work, a cup of orange juice and a cookie, and the chance to give the Gift of Life! The cookie alone was reward enough for a little pinprick and a pint of the red stuff. As I had every time the opportunity arose, I lay down and filled a plastic bag with my beautiful, life-giving blood. Not afraid of needles–I used to donate plasma in my youth for a bit of pocket money.

A month or so later came a thick envelope of test results regarding my donation. There was also a cover letter explaining that they didn’t do this for every donor, only the ones that tested positive for Hepatitis C! I had no idea when or whence I’d gotten it. Maybe that filthy plasma lab with those badly-trained phlebotomists? I felt fine, though. The letter instructed me not to donate blood or organs. That was fine with me; I’d given the gift of Hepatitis C to enough people. My work was done.

On the slim chance that that blood lab was run by lunatics, I ran to my doctor here in Winfield, kindly wise Dr. Thomas, who observed “They did $600 worth of tests here! But if you’re worried, let’s repeat them.” They were also positive. I was referred to a specialist, who put me on a course of Interferon and Ribavarin. Weeee! Maybe I could be cured. For a few months, I did the interferon injection right before my day off, because I was sick as a dog the next day. I think the ribavirin was once a day. I took it fine, had none of the side effects I’d been warned about, was actually getting better! And best of all, my pharmacy insurance covered all but $100 of the $2000-a-month cost of the medicine!

Until they didn’t. Out of the blue came a letter from the insurer saying that my employer had switched to a plan that changed the maximum co-pay from $50 to 50%–nothing to do with me, of course, just a coincidence. I couldn’t afford $1000 a month, so I had to drop out. Later, I learned that that made me ineligible for almost all of the drug studies that were available at the Kirklin Clinic. Those darned researchers liked their guinea pigs to be virgins, treatment-wise. For the next ten years those nasty HCV particles roamed and played in my bloodstream, gate-crashing and trashing my healthy liver cells, playing hide and seek with my antibodies. Every time I bled I had to clean it up like nuclear waste! But I still felt fine.

Eventually, I wound up at the Kirklin Clinic, a part of UAB Medical Center and a mighty house of medicine. The first liver transplant in Alabama was performed at UAB Hospital! There are 4 liver specialists in the state, and all of them are at the Kirklin Clinic! For the next five years or so, all they could offer was ultrasound twice a year to see if I had cancer yet, and an annual chat with a perky nurse practitioner, and a thrill-filled drive on that Birmingham freeway, where the unofficial speed limit is about 70 mph. Once I casually mentioned to the nurse practitioner that I was glad I didn’t have cirrhosis–no liver cancer for me!

“But Dr. Whatisname says you do,” she replied, slightly bewildered.

“Oh… After my last ultrasound he did call me and say my liver was ‘more nodular than expected’. I guess that meant cirrhosis.”

“I guess we’re not always the best communicators,” she admitted. “But don’t worry,” she added happily, “If you get liver cancer, it’s super slow growing. All we have to do is do a liver transplant and you’ll be fine!”

Is that all, I thought, ‘just do a liver transplant.’ Didn’t sound like a small matter to me! But still, as the doctors had said all along, I was ‘well compensated’: I had no symptoms of liver disease, and my liver functions tests weren’t much outside of normal. And I felt fine! But it didn’t last. The liver is a tough organ, but it can only take so much. Finally there were twinges of pain in my right abdomen, fluid accumulated in my belly, shoving a chunk of intestine out of my navel, I started to bruise and bleed more easily. The old liver was starting to give out.

Finally, came the call. “There was something suspicious on your last ultrasound. We need you to come in for more tests.” One CT scan later and it’s tumor time. Just get a liver transplant, huh?

Stay tuned!