I am happy to report that I’m feeling better!

August 3, 2010 by JD · 11 Comments
Filed under: Dilbeck Marketing, Family, Friends, Personal 

(This is a long post, written following the end of surgeries related to treating my cancer and just now starting chemotherapy. Unless you really know me and are obsessively curious (or just have a lot of free time on your hands), you may not want to read all of this.)

As some of you already know, I have been feeling bad for two or three years and it all came to a head in March, 2010 when I came close to dying. Very Close!

In fact, if I hadn’t been living with my daughter and her family, I don’t think I would be here to write this post this morning. When I couldn’t get out of bed they insisted that I go to the emergency room, and hospitals and I just have not had a good history. Why? Because I’ve been disgustingly healthy for my whole life until a couple of years ago.

To make this long story short, I was diagnosed with severe anemia and got 7 units of blood. By the time I got out of the hospital a few days later, my head was starting to clear and I began to realize that I was in a serious situation and just had not been able to think clearly enough to recognize it and tell that it was remarkably worse than just feeling bad for a few days. Looking back on it, I’m surprised that I could not tell how badly I was doing.

One thing led to another and a series of ultrasounds and CT scans showed a huge tumor in my abdomen. My friend and very skilled surgeon, Dr. Henry Meinecke at Murphy Medical Center, insisted on a colonoscopy, so we went ahead and did it. Yep. It was colon cancer and was pretty advanced, either Stage 3 or Stage 4 depending upon which doctor you talk to. Either way, it came close to being terminal cancer, and I’m not totally out of the woods yet.

On April 1st, (yep, April Fools Day), Dr. Meinecke ripped my guts out.

April Fools!

(Sorry, just couldn’t help it.)

Well, he really did, in a manner of speaking. He tells me to quit saying he ripped my guts out, because he used skillful and very precise surgical techniques to save my sorry life! That he did. He removed about half of my large intestine and part of my small intestine and reconnected them. While he was inside my abdomen, he removed the tumor and my gall bladder which had a large gall boulder in it.

Interestingly enough, I hadn’t been having any pain. Over the years, I’d go through a week or so of pretty intense discomfort, but not pain. I knew something was wrong, but I don’t have insurance and medical treatment is very expensive, so I did what I could to get well. It worked in most cases, but this cancer that decided to attack me and invade my space didn’t play by the rules and launched a sneak attack that was almost successful.

A few days before my intestinal surgery, however, things changed radically. I went from no pain, or mild discomfort, to having intense pains in my abdomen, especially when I was riding in a car and hit a bump. This was pretty severe. I’d rate it about an 8 on my pain scale.

The ultrasounds and CT scans showed that the tumor was large and advanced, and someone said it was about the size of a newborn baby, so I named it Charlie. Why? Because it’s a lot easier to say “Charlie” than it is to say “that big tumor in my guts that is hurting like a son of a bitch!” I’m a lazy guy and my daughter and her family don’t like to hear me curse, so I said Charlie.

After the surgery, we learned that the tumor was a bit over 8 lbs. Fortunately, it was contained in a big lump and had not spread all over my abdomen. Dr. Meinecke was sure that he’d managed to remove all of it, about two dozen lymph nodes, my gall bladder, and my bad habits.

(April Fools, again. Everyone who knows me will tell you that I don’t have any bad habits. blush.)

In a few days, I was feeling quite a bit better. I had remarkably little pain following the surgery and came home a week later when I stopped being nauseous and could eat again. I wasn’t able to do much for the whole month of April but rest and recuperate.

In May, I moved into Castle Dragon and I plan to live here for the rest of my life. I like living alone and caring for myself, but I also love living right next door to Dena, Stacey, Dakota, and Katie. I also get to see Courtnie more than I used to. It’s great having family close by and we see each other every day and still stay out from under each others’ feet. I’m loving it here.

The last few months have been busy with more CT scans, a PET scan (hated it), ultrasounds, and biopsies of my thyroid glands and liver.

I had three large lumps in my thyroid glands and they were biopsied. Fortunately, the diagnosis was benign and I was told that it was nothing to worry about, but they should be watched in the future, just in case that changes. So, I didn’t have to have one surgery I expected. Yippee!

Then we had to start dealing with the tumor they detected in my liver. It was located in the right lobe of my liver and that’s the lobe that is much more difficult to operate on. My potential surgeon, Dr. Moffat, in Asheville, was telling me that this would be major surgery, about like open heart surgery, and that I could expect to stay in the hospital a week or longer and take quite a while to fully recover.

However, since it was in the right lobe, he wanted to present my case to a team of surgeons, radiologists, oncologists, technicians, and others, before doing any surgery. He also wanted a needle biopsy to confirm that it was cancer before doing anything.

After the conference with the team, he said that I looked like a good candidate for radio frequency ablation (RFA).

Instead of opening me up, cutting out part of my liver, and sewing everything back up, the RFA would be done by inserting needles that were connected to a radio frequency generator. With the size of my tumor, if it was cancerous, it would require three needles to be used at the same time to effectively treat the whole area. But, first, let’s get a biopsy and make sure of what we’re dealing with.

I went to Mission Hospital for the biopsy and was not looking forward to it.

I more or less knew what to expect after having the needle biopsies on both thyroid glands. It was uncomfortable, but not really painful. I expected the liver biopsy to be about the same.

At one time, probably in 10th grade biology, I knew where a liver was located, but then I forgot all about it. The only thing I’ve thought about is that liver tastes awful and I won’t eat it. I’m an adult and you can’t make me eat it. ‘Nuff said.

I know you may like liver. Most of the people in my family do. Y’all can fight over my share. I don’t want it. Now, before you go ewwwwwww!!!, I’m not talking about my liver, silly. I mean chicken, beef, and other critter livers. I’m keeping my liver all to myself for as long as I can. So there!

So, they did the biopsy using a CT scanner to make sure the needles were placed properly in the tumor. I waited a couple of days and was very happy to hear that it came back as benign. Surgery and/or RFA would not be necessary.

I did a little happy dance and so did my friends and family.

But, on the same morning I wrote about it on Facebook and we were all celebrating, Dr. David Moore called from his vacation at the beach and said the results were wrong. He’d seen the scans and how it had grown and he was positive it was cancer. He said he would insist on another biopsy if I had been his father and strongly, very strongly recommended that I have the biopsy redone. He said he would arrange to do it himself, even though he was going on night shift at the hospital for a few weeks.

I thought about it for a couple of hours, talked it over with Dena, and decided to redo the biopsy. I didn’t tell anyone else, because I didn’t want to “harsh their mellow.” So I started writing about my top secret dangerous mission that I couldn’t write about. I gave some clues, but I don’t think anyone deduced that I was getting the liver biopsy redone. I had some fun letting my imagination run wild and tried to write about it as if it were a spy story. My name is D, J D.

So, Dena drove me back to Asheville and Dr. Moore performed the biopsy himself, this time using ultrasound to guide the placement of the needles. He said this tumor was a bit clearer on ultrasound than on CT scan. This time it went even easier.

He told me that he was sorry to bring me down and that I should not get my hopes up that this result would come back benign. He was positive it was cancer and he wanted to treat it before it got worse. All of my doctors were cautiously agreeing that we could win this war and cure this cancer attack.

I waited a couple of days and got the news. It was cancer. So, we scheduled the RFA a couple of weeks ago. We went back to Mission Hospital in Asheville, NC and Dr. Moore came in and did it himself, even though he was working night shift the day before and after. I appreciate him giving up his sleep to care for me. Not everyone would do that.

The RFA went better than I expected. I was told that some patients have severe pain for a week or more following the treatment. I had practically none. Yes, it was sore, and if I roll over on my right side just right, it’s still a bit tender, but not bad at all.

I was talking and joking with the doctor, nurses, and technicians until they started giving me the happy juice through my port. First I felt very relaxed, and then he ordered Versed and something else and it was lights out for me for the next 30 or 40 minutes. I was starting to come out of it just as he was finishing and started to remove the needles. He said I would feel a bit of pain, and if it hurt too much to say so and he would give me more drugs before ending the procedure.

I’m not totally sure that I know how RFA works, but my understanding is that the needles are used to conduct radio waves that heat and destroy the surrounding tissue. By using three needles at the same time, the effective radius of treatment would overlap to kill the entire tumor and a bit of surrounding tissue to make sure the cancer was annihilated!

Think of it as microwaving liver until it is burned. What’s for dinner tonight? Liver? Fava beans? Chianti? (grin) (cringe) (elaborate shudder)

It did hurt a bit, but not much, so he finished it up, told me it went well, and I was off to spend the night in St. Joe’s Hospital across the street from Mission. I had a 10th floor room and video recorded a view out the windows. I edited it yesterday while I was getting my first chemotherapy treatment, and here it is…

View from 10th floor at St. Joe’s Hospital in Asheville, NC

That evening, I was starting to feel some pain and told the nurse. She asked if I wanted pain meds. I asked what was ordered. I think the choices were delaudid, percocet, or morphine.

I was hurting, but not enough for percocet or morphine, so she gave me a couple of delaudids and I had an easy night and woke up feeling pretty good the next morning.

When I got home later that day, I had to take one oxycodone tablet, but that is the last pain meds I had to take. Through all of these surgical procedures, I have been fortunate to be remarkably pain free and I appreciate that.

So, two weeks ago, the RFA ended the surgical strikes and now we’re moving on to the chemical warfare campaign in this war on cancer. This body is pretty big, but it’s not big enough for both me and cancer, and I intend to take it back for my own selfish use.

I was talking to Dr. Meinecke a few days ago and he said everything about my case has been unusual. The big tumor was contained instead of growing throughout my abdomen. It had spread to only 7 lymph nodes. It had not spread to my thyroid as suggested by the scans. I had healed rapidly and had experienced remarkably little pain. And, most importantly (to me at least), I was the first and only patient who asked, following a colonoscopy, if he’d found any cave trolls hiding in there.

He told me that when he first realized how big the tumor was and that it had grown out into my abdomen and was eating through the muscles, that he didn’t expect me to live much longer.

That was never my plan, however. From the first moment it was diagnosed as colon cancer, I have been using visualization techniques, self-hypnosis, and other things I’ve used over the years to control the pain in my knees and lower back. I fully intended to kick this cancer’s butt to the curb and we’re making it happen.

There is only one acceptable outcome in this war. We will kill this cancer and I will be a cancer conqueror (not just a survivor) in five years.

As my brother said, we have to beat this cancer so I can die of a massive heart attack in my 70s during July or August, like all the Dilbeck men do in our branch of the family. I value family traditions and I don’t want to set off on a different path.

We found out that the cancer in my liver was colon cancer that had metastasized there. The scans show no evidence of any other places it has tried to find a home.

So, we leave the surgical strikes behind us and move into the chemical warfare campaign.

I started chemotherapy yesterday at my oncologist’s office in Blairsville, GA. That sounds like it’s a long ways from home, but I live near the state line and his office is, too, so it’s only about a half-hour drive when I’m driving (and a bit less when Dena’s driving).

Forty years ago, I could have made it in 15 minutes, but I’m not that crazy these days. It’s one of the reasons I’ve survived as long as I have.

My oncologist is Dr. Manfredi and he works for Georgia Cancer Specialists. They have a whole team of nurses and technicians and can do chemo and (I think) radiation treatments on the premises. They are located right next to the hospital in Blairsville in the building with the big clock on a tower.

Have I mentioned that Dr. Manfredi is a very important member of Team Dilbeck? (And, so are YOU!) He and his whole team specialize in killing cancer and saving patients.

My oncologist kicks cancer’s butt with one hand tied behind his back — and wins!

Have I said recently that I appreciate everyone on Team Dilbeck? Well, I do. You’re playing a very important part in winning this war!

Who’s on Team Dilbeck? All my family, friends, and acquaintances who have given support, wishes, and prayers for my recovery. People who have lent an ear when I felt like talking and left me alone when I didn’t. People who encourage me every day and make me feel better and stronger in this fight. I love you guys and appreciate you.

In addition to family and friends, Team Dilbeck also includes the doctors, nurses, technicians, and all the other people in the health system who have cared for me in several doctors offices and hospitals over the last half-year. I have met a remarkable group of caring, friendly, and skillful people who are experts in killing cancer. They are my hired guns in this war. They may smile and joke with me, but they are soldiers of fortune in waging war against this terrible disease that affects so many of our friends and neighbors through their lifetimes.

Fortunately, these hired guns are getting better and better at what they do, and more and more of us are conquering the cancers that attack us.

Of all the people in the medical system who have helped care for me, I met exactly one sourpuss. All the rest have been helpful, caring, funny, skilled, experienced, and knowledgeable. That’s why I don’t have to research all of this for myself.

So far, the funniest thing that happened was when a couple of EMTs were transporting me in an ambulance from Mission Hospital across the road to St. Joe’s. We were taking the elevator to the 10th floor when suddenly we heard a loud sound, the elevator jerked, and fell a few feet. We were stuck at the 5th floor. They both gasped in surprise, but I didn’t. I was still jacked up on the Versed, pain meds, and sedatives. I just took it in stride and watched them resolve the issue. They contacted maintenance and a few minutes later a man showed up and opened the doors. We were stopped about a foot or so above the 5th floor, so they got all of us off that elevator and closed it for service. The other elevator we took to the 10th floor was no fun at all and took us there with no incident. That’s what I like. Elevators should be efficient, not exciting.

So, now, that maintenance man is on Team Dilbeck even though I never thought of asking his name or telling him. So are the ambulance guys.

So are you, if you want to be.

What do you have to do to join Team Dilbeck?

It’s simple. Just close your eyes and imagine me being 100% cured of this cancer and back to my often friendly, sometimes irascible, and always flirty and irreverent self. You are helping me get a second chance at living and I don’t take that lightly, at all. I am not going to waste any of the years in my future that Team Dilbeck have given me.

So, close your eyes, imagine me as healthy and strong, tap your heals together three times, and repeat, “There’s nobody like JD…”

(Ruby slippers and saying it out loud are completely optional, but may be a mite more effective if you can. It’s entirely up to you. Grin.)

Team Dilbeck Rocks!

I want to thank Chanel Hilliard for coming up with the name and Deborah Bryan for helping me with the artwork that I’ll be uploading to CafePress and Zazzle as soon as I’m feeling up to it. I’m stronger every day, but my brain isn’t clear and I find it hard to do simple business-oriented tasks. I can write on a blog or post to Facebook without much effort, but I don’t really know how well, or poorly, I’m doing. When I try to do something more serious, I’m fighting through a fog that surrounds my big old brain and makes my eyes glaze over as I’m trying to think it through.

So, even for simple things and tasks, I’m keeping lots of lists and step-by-step instructions for what I have to do. I never used to take any pills, but now I could open my own mini-pharmacy, if it were legal. I finally got my system together and have everything organized for when I have to take everything.

Sunday was the first time I was able to do something relatively simple related to building and maintaining websites, and I worked for several hours finding more information and updating my lens about Dolly Parton on Squidoo. I still want to do more with it, and will, as well as my other 60 or so lenses there and all my websites that I didn’t close last year and this year.

Other things just are not getting done until I’m doing better. I am getting better, and they will get done, but it may be awhile.

You know, fighting cancer is not cheap. One of the pills I’m taking for two days following chemotherapy treatments costs $750 each. Wow!

A pill that expensive should make me stand two inches taller, clear up my skin, change my gray hair back to dark brown, make my feet smell better, and give me the manhood and virility of a porn star. But, all that aside, if it keeps me from being nauseous following the treatment, that will do for now.

So, who’s paying for all of this? That’s a very good question.

I haven’t been able to work and support myself for about a year, although I struggled through the motions until March, when it became impossible to do much of anything.

I’m still earning a bit from residuals and all the websites I built over the last few years, so it’s keeping things running until I can get back in action and resume my marketing business, but I don’t know how long that will be.

In the meantime, I swallowed my pride and applied for disability, medicaid, and food stamps.

I’ve always had a lot of pride that I could take care of myself and those who depended on me. I reached a point where I couldn’t do any of that.

Fortunately, Dena insisted that I apply for any help I could get. So I did, grudgingly.

When you see medical bills in the hundreds of thousands of dollars and not being able to work to put food on the table, it gives you a different perspective on life and people who need help.

Some of my friends will be pissed off by what I’m going to say next, and that’s okay, but I don’t want to lose you as a friend. I just want you to take a moment and rethink things.

I always thought it was each of our personal responsibility to take care of ourselves and our families. We should provide for our own health insurance and set aside money for a rainy day — or an extended health care crisis.

When Mom was diagnosed in 2001 with colon cancer, I closed my metalsmithing business and dedicated my full-time efforts to caring for her 24/7/365 for over seven years. My income dropped and I was able to make ends meet and make a little profit through affiliate marketing, but my main focus was on caring for Mom.

I worked in the next room so she could call me any time she needed something. I slept on the couch next to her so she could wake me easily if she needed anything. I didn’t sleep a full eight hours for over seven years. I was her sole, full-time caretaker and I don’t regret a single moment of it. I learned to take several short naps in the day and night and basically work 24/7 with short rest breaks when necessary.

I still hate that I could not provide the level of care she needed the last few months of her life, but I’m satisfied that I did the best I could.

Now, during my own health crisis, I am proud to say that my daughter Dena and her husband Stacey have done their best to care for me when I needed it and I appreciate all they do for me. Words are inadequate to express this appreciation so I’ll try to show it every time I can. Thanks, guys.

My grandkids, Courtnie, Dakota, and Katie have been big helps, too. Thank you!

So, I applied for help. Food stamps are keeping me alive. My disability was approved rapidly and I’m getting a small check from SSI while I’m unable to work. Medicaid was approved and it is paying for everything other than a few small co-pays when I see doctors or when I buy prescription drugs.

I’m looking forward to the day when I feel a lot better and I can go back to work and support myself. Until then, y’all are keeping me alive through paying your taxes. You may not like it, but I thank you anyway. I will never again gripe about paying taxes when I’m able to support myself. I’ll still try to do everything legally possible to reduce what I have to pay, but I’m not going to curse any more while I’m writing and signing the check.

So, when you rail against “Obamacare” and the worthless people who don’t pay for their own health insurance, don’t pay for their own food, don’t pay for their doctors appointments, and don’t pay for their own meds, now you’re talking about me and I really don’t appreciate it.

You’re free to have your own opinions and vote however you like. That’s the beauty of the USA. All I’m going to ask is that you be a bit more tolerant, and a bit more supportive of people who aren’t able to care for themselves.

I appreciate all your friendship and love you for all your support, but I feel sorry for you for some of your political views. ‘Nuff said. I try not to talk about politics, religion, and sex in public. I don’t always succeed, but I try.

I got a bit side tracked. Let’s talk about chemotherapy for a bit.

I didn’t know what to expect, and I was prepared for a bad experience, and may have some in the future.

John Dilbeck on his first day of chemotherapy image

John Dilbeck on his first day of chemotherapy

However, I’m happy to report that my first two days of chemo are going well. I’m tired, jittery, and don’t have much energy, but it’s not much worse than I was already feeling. There has been no nausea (yet, and hopefully there won’t be).

If you look closely at the picture, above, you’ll see the IV line going to the port on my upper chest. That’s a lot easier than having IVs put into my arms and hands, and they’ve been doing a lot of that the last few months.

It’s a bit of a hassle wearing this pump for a couple of days, but I’m getting the hang of it, and it is nothing compared to serving in the military and being sent to places like Iran and Afghanistan. Those are the people who are facing difficult situations, so I can’t compare my situation to their’s and I’m not going to complain about some minor annoyances.

Last week, I got to where I could walk without a cane inside the castle and on the porch, and I’ve been taking a few steps without leaning on it when walking on level ground in town or visiting my doctors. I’m getting better, more clear headed, stronger, and my balance is improving, too.

I already have one dance promised for Christmas, and I intend to dance a bit at my 40th year high school reunion in October. I may not be much of a dancer, and I’ve sat on the sidelines and watched others look silly instead of dancing myself. But, I have a different view of life now, and I’m not going to miss those opportunities as I am able.

I’m practicing every day with my guitar and my left hand is getting stronger. The songs are starting to become recognizable and fun, again, but F chords and barre chords are still a challenge. I’ll get there. I’m running scales every day and playing a few songs for fun.

I’m self taught on guitar, banjo, mandolin, and fiddle and I intend to relearn them and do it right this time. I’m studying music theory, piano (and need to buy a good keyboard when I can afford it), and I’m watching videos and reading books to help me learn the right way to play guitar, banjo, and fiddle. Thanks to David Brose’s help (he’s the Folklorist and a professional musician who works at John C. Campbell Folk School), I’m going to be able to purchase a decent Gold Tone banjo in a few months. It won’t be as good as the Gibson banjo I played for a long time, but it will be better than I’m able to play right now. Thanks, David!

Some people say you never get a second chance to do things right.

They’re wrong.

I have a second chance and a new lease on life. I’m going to do a lot of things right that I just took for granted for many years.

I laugh every day, smile a lot, say Thank You all the time (and mean it), and look forward to interacting with the people in my life. Even though I’m doing a lot of it via computer, it’s not the same at all as it was when I would immerse myself into a computer programming or writing project for months at a time and then stick my head up to see if we had a new president, if I was still married, or what month it was. Those days are gone forever.

I know of nothing better than spending good quality time with family and friends, and I’m hoping to do more of that with YOU as we’re able.

Thank you for all your support and for putting up with me over the years. You’ll never know how deeply I appreciate it, but I’m going to try to show it every chance I get.

Last night, I was very tired but so jittery that I could not sleep. I felt as skittish as a long-tailed cat in a room full of grannies in rocking chairs at a knitting party. I finally managed to go to sleep around 4 and slept well until after 8. I’m not as jittery now, and other than continuing to be tired and weak, I’m doing great.

I’m feeling better!

This is what I look like as I’m writing this post…

Wearing chemo pump and drinking coffee at home

Wearing chemo pump and drinking coffee at home

I intend to feel a lot better, and your good wishes, prayers, funny jokes and stories, and other things we’ve shared mostly on Facebook have been part of my healing process. I surround myself with good people, humor, great music, good movies, and more good people. I intend to be strong and healthy by my birthday next July and there’s going to be a cookout, jam session, and sing a long. You’re invited.

Team Dilbeck Rocks!

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