My Life With Cancer (The Whole Story)
Tuesday night during the "State of the Union" address, President Obama pushed for researchers to find a cure for Cancer. Since 2005, I've had and have cancer. I have a form of Lymphoma that is incurable. I've fought it without chemotherapy even though I was told I would be dead within a year without chemotherapy. Just yesterday, I floored a coworker who had no idea I have cancer, he couldn't believe I'm as strong and healthy as I am and have cancer. He was even more floored that I've done it without chemo.
Here is the story of my journal so far.
At times in life you will come across "Now That Ain't Normal", usually it will involve a brother, sister, cousin or mother-in -law. In my case I was able to add some strange bumps to the list.
Just before Thanksgiving 2004, I noticed some bumps that seemed to suddenly appear. There were 5 of them. One on my right temple, left side of my neck, two on my shoulders and one on the base of my neck. I thought they were just ingrown hair, so I tried to get rid of them (pop them), that didn't go well. So they went right on growing.
It wasn't until we were on the "Mee at Sea" cruise out of New Orleans in 2005 that a doctor in our group told me "you need to get those looked at." We had a blast on that cruise, there were over 250 people from the Treasure Valley, along with my brother with his family and my dad. The ships comedian had an entire routine about Idaho, he wanted to scrap it when he found out about all the people from Idaho on the ship, but we asked for it and he delivered. Brenda got dunked in the ocean while paragliding and we went cave tubing in Belize. If you ever get the chance the Cave tubing is incredible, kind of like the Boise River when it's really warm, with long caves and bones from Mayan sacrifices....OK kind of like the Boise River.
So I spent the rest of the cruise feeling like I had baseball size welts protruding all over. Actually the largest was about the size of the tip of my thumb and it was at the base of my neck. Inside I was a wreck, then I went diving on one, a wrecked ship, not Brenda. Not that Brenda is or ever was a wreck. I'm 'gonna stop here before I get in more trouble.
When we got back from the "Mee at Sea" cruise, I got an appointment at Ada West Dermatology. I went through all the initial appointments and then came surgery day. It was a Friday afternoon (I wanted the weekend to recuperate), I was all numbed up and prepped in a surgery chair with my face in one of those face hickey things. You know the ones I'm talking about, you put your face in it for a massage and when you're done everyone knows what you were doing, yeah that one.
Dr. Burr (pictured) started working on the now watermelon size lump (actually it was the size of a walnut) on the base of my neck, when he said "Uh-oh". Now I could get all flowery and do the he said, I replied, he exclaimed and all that, but I'm not. I'm going to put down the conversation with "Me" and "Dr. Burr". I'm pretty sure you will be able to follow it. Remember I'm talking with my face toward the floor, looking through that hickey thingy, while he is sitting off to the side looking down at the base of my neck.
Me: So, I've heard the Cosby "OOP's" routine, what's up.
Dr.Burr: It's a tumor.
Me: I said it's a tumor.
Dr.Bur: I know and I was willing to bet you a million dollars it wasn't.
Me: Great now you tell me. OK so what's the big deal?
Dr. Burr: Well, we're going to have to get you downtown and into surgery.
Me: I thought that's what were doing now, why do I have to go downtown?
Dr. Burr: Because it's growing down into your spine.
Me: OK, does downtown have anything you don't have?
Dr. Burr: No, I have all the latest equipment.
Me: Do they have as much experience as you doing this?
Dr. Burr: No, I'm as experienced as anyone in the valley.
Me: So why do I have to go downtown when I'm already cut open and sitting here?
Dr. Burr: Because they're going to have to put you out so you stay perfectly still and don't move.
Me: Well Doc, I'm not moving so knock yourself out.
At that moment the whole mood of the room changed, Dr. Burr canceled the rest of his appointments for that afternoon and went to work removing 5 tumors.
It seemed like I was in that table/chair/hickey thing forever. Everyone was asking "how are you doing". I was fine, I just wanted to see what was going on and all I could see was scrubs and feet. I love learning and what an experience to see myself having tumors removed, especially the one going into my spine.
I had a tumor removed from my shoulder in 1993. My best friend from grade school and junior high, Dr. Vincent (Skip) Ross did the surgery. He asked if I wanted to see and I was all in. He set up a mirror for me to see. I remember watching him start to cut with his scalpel and thinking "wait this isn't hurting, man is he cutting really deep, that thing is really gross, I'm bleeding all over", it was really cool.
Now back to our story. When Dr. Burr got finished he was sweating like mad, he had gone through quite a bit, tumor surgery wasn't something normally on his plate. He took off his gloves, looked at his nurse Janice and told her to get me patched up, then he left the room without saying anything else.
I looked at Janice, gulped and asked "is he OK? ", she said "I've never seen him do that before, I don't know." I was worried that my pushiness had crossed some sort of line and made him mad, I wasn't trying to do that, I knew I was in better hands with him than anyone. Well that and the fact I wasn't in the mood to be in an ambulance, face down with the back of my neck open.
About 20 minutes later Dr. Burr came busting in, he was still sweaty and I wasn't sure what to expect. He came over to me, grabbed my hand and shook it, then told me "Thank You, you made me feel more alive today than I've been in along time, you reminded me why I made this my life." He then looked at Janice and told her to only charge me for one procedure and make sure insurance covered it. Now that's the kind of doctor you gotta love.
It was about eight that evening when Dr. Burr called the house checking up on me. I was feeling all warm and fuzzy until he had me hand the phone over to Brenda. She proceeded to run me through a series of facial exercises and report what happened. It was then I found out about how close that tumor was to nerves, one wrong OOPS and everything my mom ever said about my face freezing in that position would have come true.
I've learned over the years that when it comes to medicine you will never get a phone call like this: "ring"...Hello? Yes, Mr. Mee? Yes this is him. This is Dr. SoandSo's office. Yes... We have the results of your biopsy and you're gonna die....well have a good day now, bye.
No if it's bad news, you're going in to the principals office as I call it. So that's what happened with Dr. Burr. His scheduler called wanting to set up a time for me to come in to discus the results of the biopsy. OK, secret, the more serious, the more they will fit your schedule. Follow up for say a zit, "we have an opening at 3am Tuesday", follow up for this stuff, "when would be good for you", I knew it was serious.
So I met with Dr. Burr, funny thing he kept calling me "Kiddo" until he found out I was older than him and that was about 4 years later. For some reason we met in the same room for the surgery. He looked at me, explained it was some sort of Lymphoma and there wasn't a cure for it. He went through a bunch of other stuff that to this day I don't remember, all I could think of was hhhmmm interesting I have Cancer.
I remember his last line, "get me wrong, it will be a battle, but quite a few people have made a good go at this, so what do you think". At times like this I have no filter on my thoughts and said "it's gonna be an interesting ride" but I'm gonna kick the $#!+ out of it. What could I say, for some reason there was no fear, I knew it would be an adventure. He told me I was the weirdest duck he had ever met.
When you're diagnosed with something like Cancer people talk to you differently. They tilt their head (kind of like a dog hearing a whistle), talk to you in hushed tones (like the Cancer librarian will suddenly appear and tell you to shut up), and they always ask "are you OK". So depending on my mood my answer will involve either a sincere answer or "hey it could be anytime" followed by clutching my chest (when you have something like this, people don't know the difference between cancer and a heart attack).
But and this is a great big twerkin' but, (OK not spelled the same), you will suddenly get tagged with the title of Cancer Victim. Really, officer, It was late, I was in an alley that I knew better than to be in and Cancer came up behind me and mugged me. Oh #&!! no, I ain't no victim. I am a WARRIOR and cancer is my B!@T(#.
I really feel that if more people owned the "WARRIOR" and got rid of "victim" there would be more people who not only survive cancer, but conquer it. Cancer is a battle, you don't go into battle expecting to survive, you go in expecting to conquer. So don't even call me a cancer victim, you can keep that thing away from me. Could you imagine William Wallace leading his troops into battle and telling them "Men we aren't going to battle to conquer, but to just survive and then be victims", that's why we wear kilts."
So don't talk to me in soft tones like I will run away, I won't. Ask me anything about what I've gone or are going through, I'm doing well and will share anything I've learned, and don't tilt your head or do duckface in a selfie either, for that matter don't do selfie's in a mirror, we tend to see way too much.
Well dang it was official, I have Cancer and I'm pretty much a doctors worst nightmare. In order to tell the next part of this story we have to go back in time. In 1993, I was a physical nightmare, I was nearly 300lbs, had a cold that turned into an infection that almost killed me and had my first ever surgery with a tumor being removed.
I really thought I was in shape until I was getting fitted for a tux. I had this little Oriental lady doing the measurements, so she wrapped the tape measure around my waist and said (in a really thick accent) "oooohhh, you big boy you got 40 waist." I looked at her, sucked in my gut and said "no way, I've never been bigger than a 34, measure again." So she did and said "you still big boy, you have 39 and a half inch waist." That was my A-ha moment.
I started working out, went to seminars on herbs, minerals, vitamins and what they did to the body. I was like someone who had lived like hell and finds religion. I started taking Co Enzyme Q10 along with a vitamins. I wasn't going to fat and unhealthy anymore. I dropped over 50lbs just by working our and changing my diet in my first year.
Back to 2005, I would say back to the future, but it's more like back to the past future, face it "Back to the Future" is one of the greatest movies ever. Armed with years of learning I was ready to face my Oncologist (fancy word for Cancer Doctor) and just what I thought he suggests Chemo.
Now I used to be a pitcher and if I didn't like the call I would shake off a pitch forever. There was one game where the catcher wanted a curve ball and asked for it 11 times before I called him to the mound and told him the batter we were facing ate up curve balls. Sure enough my catcher walked back to the plate and asked for a curve ball, so I served one up that is still in flight. I learned that day no matter what the catcher asks for, shake it off until you get what you want. So suddenly my Oncologist was a catcher and I was shaking off his pitch like mad.
I love having the chance to befuddle someone, especially doctors. Having tumors and not having Cancer anywhere else, doesn't happen very often. But "doesn't happen very often" tends to be my life.
Now we have a problem, the doctors still want me to do Chemo and I don't, at all. Every time we meet first thing that comes out of my doctors mouth is "you really should at least consider Chemo." Yeah, I'll consider it........nope not happening. I should have put "you will never mention Chemo again" in the bet. I did get charged for the first dose of Chemo that I never did. It was $7,800.00 to our insurance company and $2,200.00 that I had to pay our of pocket. You should have heard the person at billing when I called and told them there was a mistake on my bill. They still have me as not payed because I couldn't prove I never did Chemo. But that's another story for another day.
I did realize something had to be done, especially with the tumor that was going into my spine. No matter how hard a doctor try's there is always the possibility a few cells remain and those cells will grow unless killed off. That's one of the reasons doctor's use Chemo, they also use what they call "Radiation Therapy." So, DohdyDoh, I decided to do radiation.
Before you go into the big room and get nuked, they take you through a simulation. Guess they want to find out if you're gonna' freak when left in a big room strapped to a table. You really get the feeling of how Frankenstein's Monster felt. But before you even get that far you get introduced to the special treatment waiting room and this place was a shining beacon of optimism....NOT.
When I walked into the Cancer treatment waiting room, I walked into the gloomiest mood sucker ever. There were 7 people all paired up, well number 8 showed up a few minutes later in one of those backless gowns. Everybody was all huddled up in pairs and you could have heard a silent but deadly before it hit your nose. Yes that quiet. The lights were dim and it felt like death was holding a card party. I couldn't stand it.
I had brought Krispy Kreme donuts, even though the place was loaded with snacks, so I'm pretty sure the people there thought I was a delivery person, until I went into the changing room and came back out with....The Backless Gown. Yes I was one of them, but I was alone and that seemed to be a problem. So I flipped on the bright lights, sat down next to one couple and asked, "so what you in for." I was ready for about anything except a real answer.
His name was George and it was his first day for actual radiation. I told him what I had, he asked if I was doing Chemo, when I told him no, he said "that's brave." I told him it was my choice and he agreed. That conversation opened up the whole room. Suddenly people who were huddled up scared, realized we were all in this together. Some, more severe than others, but still we were a fraternity and sorority, so we were a saternity (spell check is having a hard time with that). Either way the room changed from a place where Death was waiting to a place where Hope lived.
That room changed that day, people started coming early and staying after their appointments to see each other and just talk. Some folks became more than just waiting room acquaintances and there even was one romance, I don't know how far it went, but they weren't real young. I loved the looks on the radiation tech's faces when they would call someone in for their appointment and get told "hold on a minute, we have to finish something."
I passed the torch of keeping the room alive to George before I left. George still had a month of treatments left, even though he started the same day I did. I told him to pass it along and make sure to have that person pass it along. I don't know what happened to George, but the change in the room that first day gave everyone a boost. At some point this year I'm going to be returning to that room, not out of choice, so it will be interesting to see if it's still alive.
At some point if you're going to have Radiation Therapy, you have to go into the Radiation Room. If the picture from the last two posts isn't from St. Al's then there is another room that looks just like it. But back to our story. For the most part when you get Radiation Therapy, they put you on the table. (See exhibit "A") If you're steady and don't move they don't strap you down, but if you're a bad boy....
I guess I wasn't bad enough. Actually some people get in there and can't handle it, they freak out or they just fidget. What they do is mark and area with three or four small tattoos. Then they line up the light so the radiation beam goes only to that spot. I had five different tumors that needed treatment and the last one they would work on was the one on the base of my neck. I would lie face down on the table and they would raise it to between four and five feet. Then the radiation tech's leave the room.
Now they tell you it's totally safe and there's nothing to worry about, right before they leave the room with foot thick lead lined walls and a huge lead door that has to use a motor to open and close. So I feel perfectly safe, yeah right.
After about a week of doing this routine, I figured out something, there was about a 30 second window where I was free to move about the cabin. See between the time that the buzzing stops from the radiation machine and when the door is open, the radiation techs aren't anywhere they can see me. They have to leave their safe room with all the cameras that can see me in order to open the big door and the big door takes about 15-20 seconds to open all the way. So I hatched my plan......
I found out in all the years anyone can remember, nobody had ever pranked the radiation tech's, not a single prank, that's sad. So I made it my mission to come up with an epic prank, not just a prank but one that would change things.
So here's the setup. Each day the last thing I got radiated was the back of my neck. I would be face down on a table, with the table about 4 and a half feet off the ground. The radiation machine would be just inches above my neck, leaving me very little room to maneuver, but it was possible. All I had to do was wait until the techs were out of their room waiting for the door to open.
I only received radiation on weekdays, so I waited until Friday to pull off my feat. I let everyone in the waiting room know what I was going to try an pull off in advance, so there was an audience. There must have been at least 20 people there when I arrived and still the tech's didn't have a clue. I got into my gown, and waited my turn. I had also brought in some Krispy Kreme donuts so the room was more like a party. So much for a bunch of cancer patients being gloomy.
When I got called for my turn, the room suddenly went dead silent. I looked at everyone and said "don't give it away, keep the party going." I followed the tech's into the room, past the huge door and onto the table. Sure enough the last thing to get radiated was the back of my neck. The room is kept dark for some reason when they zap you, don't know why but it is.
I laid there waiting for the zapping sound to end, gave it about 10 seconds and slipped off the table. The door was just starting to open so I quickly slipped behind the very end of it. Wasn't my best move. The door kept coming closer to the wall and I was between the two of them. I held my breath hoping I wouldn't be the first patient smashed to death behind it when it stopped. I had less than an inch between me and it.
The Two techs went walking by without any notion something was about to shake up their world. As they went into the room, I slipped out back into the waiting room. It took them about 5 minutes to find me. I was even in the same chair as I was before. I looked at them and said "It's about time, I've been waiting since you called me about 15 minutes ago." The look on their faces was priceless. The crowd in the room waited for me to stand up, which was my signal they could let loose. Oh did they let loose, there was hootin', hollerin' and more laughter than that place had ever heard.
Yes it was epic. Not only was it the first prank ever, but it was also the first time they had ever lost a patient. Now these were just two of the half dozen tech's and there were visiting tech's and interns training for a week here and there, so there were many more pranks to come.
It got to the point where one of them would stay in the control room watching me while the other walked in, just in case. On the other hand, they would also set up new and visiting tech's and watch the monitors for the fun. You have no idea how high someone can jump when they come around the corner, you're sitting in the chair and not on the table, yes some of them screamed like a little girl.
I did manage to get one tech twice. I did the usual spook her by sitting in the chair, but then I waited a couple weeks. I was getting a tumor on my right hand radiated, so as she came in I slipped around to the other side and put my left hand in the solution. She just about had a heart attack thinking she radiated the wrong hand.
If you ever get Radiation Therapy , do it in the winter time. You will get a skin burn from it and if you are in the sun it gets worse. In the winter time it's cooler and you can wear something over it (avoid wool at all costs.) Aquifer is the best stuff to put on the area you are getting radiated, but to feel better you really have to goop it on, this makes the radiated area look really red and shiny. I tell you this to lead into our next story.
The whole time I was getting treated for Cancer, I was determined that nobody would find out. I didn't want to be one of those that got out of doing something because they were sick, especially with Cancer. I wasn't going to pull the "Cancer Card" no matter what. Now because of that, very few people where I worked had a clue I have Cancer.
Each year the company we worked for would hand out awards. We would get together in the conference room and everyone would be uncomfortable wanting it to be over. I'm kind of an 'I don't kiss any sort of butt' type person, so I never expect anything when it comes to these sort of things.
Well sure enough, Brenda and I are given out the top award for being some sort of hard worker, which was nice. I did feel honored and we had to go to the front of the place to accept it. As I was walking up I heard someone say "look at his neck, he must be really embarrassed." I was still getting radiation on the back of my neck, it was bright red, gooped up and probably glowed.
At some point the person who muttered the comment found out what I was going through. Now mind you they had no idea if I had heard what they said or not, but for some reason they felt the need to come to me and completely apologize. Why is it that people feel the need to over-apologize? They went on and on about how "if they had known" they would never have done this and that and my people are just like anyone else, even in their condition. I was starting to get that glazed eye look, you know the one where you are so bored you consider smacking yourself in the head with a hammer just to end it. Finally I stopped them and said, "What do you mean My People?" Man it was fun watching them back peddle from that one too.
For the record, to me this whole Cancer thing is an adventure. I take it as a challenge to find ways to beat it. I love modern medicine and think everyone in the medical industry has their hands full. I just won't use Chemotherapy, there has to be a better way. That's my goal, to find that way.
When you receive radiation they tell you aside from some redness (burning skin), there shouldn't be any side effects. Yeah bu!!.
I got radiation, like 18 weeks of it, Monday through Friday, right on the tumor that was going down into my spine right at the base of my neck. I was told it wouldn't hurt anything but the tumor. Let's look at this, Radiation can't move around something to get to the tumor, so in reality it's going to destroy whatever on the way, or at least alter it at times. That is the truth, so there has to be side effects at times and that's what happened.
I tried to go with what the doctor was trying to put in my head, but it didn't work. There were times "air" hurt, it seemed like I was running head on into a brick wall covered with razor blades. Other times I could walk through that wall and not feel a thing. It was one of those days that would come back to haunt me.
Mid-afternoon is my workout time at Axiom (at that time it was GOLDS) and I was feeling 10 feet tall and bullet proof, so I decided to test what I could do. I was at the end of my workout so I got a few buddies to help. I didn't want to break a bunch of cinder blocks with my face so I decided to see how much I could bench press. The bench press is where you lay on your back, hold the weight bar with your hands positioned about shoulder width and you bring the weight down to your chest and push it up.
I did 20 lifts with 200lbs and didn't even strain, that's when the fun (if that's what you can call it) began. We and I say we because they were adding the weight and I was lifting it, got up to a little over 300lbs, I pressed it 20 times. I'm a firm believer in "Divine Intervention," and it was about now God looked down on me and told me "STOP." I actually heard that voice in my head say that. So I stopped. I got all sorts of high fives, "you da' man" and all sorts of other amazed comments and left.
It wasn't until the next day when the effects complete left me that I realized that I had hit totally stupid. We aren't talking a little "Doh, I shoulda' had a V-8," I'm talking booger munching, bubble gum off the bottom of the desk, STOOPUD. My man boobies hurt, not just a little hurt, no it was the kind of hurt you feel when you do your first really good belly dive hurt, only it didn't stop. Eating and brushing my teeth were major events, washing anything above my waist was impossible. Even reaching down to put on my shoes took more effort than was required to finish Mt. Rushmore. Never mind if my nose itched, that was impossible, I would have to find something to rub my face on. The worst part of all...I couldn't dare say a thing to my wife Brenda. If she knew there would be no sympathy, there would only be taunts and mocking, you know the things normal married people do.
So I suffered and suffered, to this day I think I still suffer just a little.
Almost three years would pass before I would notice some more bumps. Sure enough it was back. I knew the routine by then, so I got with Dr. Burr and this time there weren't any "Uh-Oh's." (see My Life With Cancer, "Uh-Oh' Part 3) There was one of the most embarrassing moments of my life though.
See there was one tumor that was at the....well next to my manhood. It was on the inside of my right leg and there was no modest way to take care of it. I don't see how medical professionals do it. I would be scarred for life if I had to look at another guys junk, then add to that have to move it to do my job of cutting in right next to it. No, no, no, no, no, would not happen in my world.
Ladies, I feel your pain, stirrups...check, doctor looking right up your...check, member of the opposite sex assisting...check. WHAT, if that's gonna happen I don't ever want to see them in public and since I know a lot of people, well you're gonna have to kill her when we're done. Oh come on, what's a dead body when my manhood is involved. Ain't gonna happen? Well then I'm gonna have to marry her and my wife won't be happy with that. No good huh, then how about a shot of something to calm my nerves and some Valium. No when I said shot, I meant, WOW that really takes the eldghe ouff drool.
Four tumors later and I was ready to pour into the car for the ride home. I did learn a few things. First off, medical people are professional and classy, I've seen my nurse at the gym many times and she always blushes and walks the other way...fast. Second, if you get cut anywhere near your manhood, it deserves a new gaming system. Halo and XBox were my friends for the next couple weeks. Yes I am Master Chief.
(Sunset from my front porch)
After the operations I was in kind of a limbo state waiting for results. I remember Dr. Burr saying to his blushing assistant, "send those to Cole." Little did I know Dr. Cole would become an important part of my life and a buddy. This is also where my story takes an unusual twist.
After you have a biopsy it takes a few days to find out the results. Usually the doctor will call you in and tell you. In our case it was quite different. We used to deliver donuts every weekday to someone in the Valley. This day we drew Dr. Cole's office. At we had never met and I didn't ring a bell that he may have my sample.
I was meeting doctors at St. Alphonsis and they were giving me the full court press again to do Chemo, even though they didn't have the test results back. So Brenda ran the donuts on her own this time. It was a rainy spring day and it hadn't let up, so she got to his office, said hello and left the donuts. As she was starting the car Dr. Cole came running out in the rain, stopped her and said "I know this is against HIPPA rules, but I also know you and your husband share everything. You have to see this, he doesn't have Lymphoma."
Back in his office Dr. Cole showed Brenda my sample, he had just started working on it just before she arrived with the donuts. OK so tell me there isn't someone running those big tumblers we call the Universe. He explained how my samples didn't have enough markers to be Lymphoma and that is must be something else, maybe even an infection.
Brenda called me at the Cancer center with the news and told me I had to come to his office right away. I met Dr. Cole, who we will now call Ryan, one of the most incredible people I've ever met. His standards and attention to not only detail but the need to get it right are second to none.
Ryan showed me how others would call what I have Lymphoma, but he also showed me the difference between mine and Lymphoma. Mine was different, I could see it and I wasn't even trained with years of schooling. Maybe I didn't have Cancer. Maybe there was a possibility it could be an infection and all I needed was some antibiotic.
That day would start a journey that would take many twists and it would never be boring.
As the spring turned into summer we started on a journey to find out what I actually had. Ryan started looking into every different kind of infection that would cause the bumps, we looked at things, common and some uncommon.
It got to the point where we even thought it may be one that you can get from a gnat, in the Central America region. ding, ding ding, we had just been there on a "Mee at Sea" cruise and gone cave tubing in Belize. I got bit a few times by gnats and only one of them needed to be carrying the fungus, so that had to be it.
The problem was, the only test available was at the infectious disease lab in the Pentagon. Really the Pentagon, come on, how on earth are we going to a test from the infectious lab at the Pentagon. No problem, Ryan was a former cadet, he had all sorts of connections, I shoulda' known.
It took awhile for us to get the test and I was hoping and praying that would be it. Everything was looking like it could be, the travel, the bumps everything. The test arrived, I even had to get a special blood draw for it, and.........no good, that wasn't it. Aaaaarrrrgggg, this was getting really frustrating.
We had gone through every infectious disease known and not one gave us any glimmer of hope at all. The doctors were pushing me to take Chemo, I was refusing on the hope I didn't have Cancer. We were running out of options and Ryan was thinking that even though he wouldn't call it Lymphoma, that might be what it was. But there was no sign of it besides the tumors, nothing in the blood or bones, so what could it be.
I was at Ryan's office using his door frame as a scratching pad, kind of like a bear would use a tree when he looked up and asked "what are you doing." I looked at him, kind of like "Duh" scratching my back. Then he said "does your tumor itch?" I said "like you wouldn't believe, at times I wish I could carry a tree with me to scratch my back on." I should have known right then that when you see the light bulb over someone's head, it really is like in cartoons.
I was in Ryan's (Dr. Cole) office when we found out the results of the test from the Pentagon....Nope not it. I was deflated. I had 5 tumors and they weren't an infection. In the immortal words of Captain Jack Sparrow, AAAAAARRRRRRGGGGG. Funny but I really don't remember him ever saying that phrase, gonna' have to research that one.
Back to our story. I was using Ryan's door as a scratching post when he came up with an idea. He asked if my spots itched, which they did like mad, so he ordered in a test. He told me I could only know what it was if it came back positive. GGGGRRRRR, (learned that one from my poodles.)
I waited, about a month or so it seemed actually, it was less than a week later that he called me into his office. "I have it, come take a look and I'll explain it to you". Ryan loves doing that, if he could every patient would see what is happening to them. Ryan had ordered in a test for Hodgkin's Lymphoma, he showed me how everything from my samples fit Hodgkin's and how they didn't fit B-Cell Lymphoma.
Now there were problems, first my body wasn't treating Hodgkin's like 99% of the people who have it do. The next thing was Hodgkin's is about 80% curable with Chemo and I still wasn't going to do Chemo. I knew there was going to be a big fight now with the doctors at St. Al's Cancer Center. I had to do something and do it fast.
(It wouldn't be until years later that science would find out how T-Cells can make Lymphoma look like Hodgkin's)
The protocol for treating Lymphoma is Chemo, stem cell transplants, radiation and of course surgery. So I knew they would be pushing the other three since I'd already gone through the Surgery part. Since I had gone through the various scans, they knew exactly where the tumors were, there was no mistaking it.
It was late May and we had a busy summer ahead, with parades, rodeos, concerts and such. So I decided to put off anything I would do until November or so, but that didn't stop the doctors from trying to get me to use Chemo. It was a full court press, every time the appointment would end with, "you really should consider chemo, your life really does depend on it." I would end every conversation with "NO" not going to happen. This went on all summer.
During this time I upped all my antioxidants and tumor fighters. I was taking Co Enzyme Q10, Green Tea Extract, Grape Seed Extract, Catsclaw, tomato's, blue berries, vitamin C, deep green veggies. I cut out fat, sugar and foods that may cause cancer. I spent time each day visualizing my tumors vanishing and using meditation and prayer. Finally I worked out even more than normal, I made my body sweat hard everyday.
I dropped 12lbs which made the doctors freak out that the cancer was growing, even though it wasn't. I went through more pokes and tests, if they could test it they did. They knew right where every tumor was and were just waiting for me to crack and do chemo. But I had resolve, somewhere deep down inside I knew I would beat it without chemo. That and the fact the side effects of chemo scared me more than the cancer.
I was doing everything doctors want, I was actively involved with my cancer. I was also doing everything they don't like, which is tell them no. Finally the doctors said I should get a second opinion. My thought was why do I need another opinion, I know what I have and what I'm going to do to fight it. I didn't need a second opinion. So this was their new tactic, get me to another doctor for a "second opinion", yeah right. This went on aaaallllll ssssuuummmmeeeeerrrrr.
As I waited five hours for my two in the afternoon appointment, I did what I normally do....talk to people. Archie and Maggie were an older couple. Archie had just turned 99 a week earlier, they had been married 77 years. Maggie was quick to tell me she was only 15 when they were married, but it was OK back then. She was one of he sweetest people I've ever met. I asked her the secret to them being together so long and she said "oh dear, we all have our faults, so we learned to just love them and let them be."
Archie had been in for his annual physical and the blood test came up with the leukemia. I asked him if he had felt anything different and he said "son at my age every day something feels different." So then I asked why he decided to do chemo. He said he wanted to make it to 100, nobody in his family had lasted past 75 and he wanted to be the one to hit that century mark. The doctors told him that with chemo he had a good chance to make it and without it, well they really couldn't say. I told him good luck, I knew if he made it he would be a tough year and a big if, but it wasn't mine to say.
Then there was this squirrelly dude who got around the room and it was a big room, by crawling over the couches. I knew he was headed my way and sure enough as soon as I was done talking with Archie and Maggie, he was there, about a foot away staring me in the face.
"Hi, my name's Jordy, short for Jordan, but Jordan sound too much like a girls name, so I go by Jordy." Jordy wasted no time telling me his whole story. He had some sort of cancer they couldn't cure and he would be dead soon, but he was fighting it as hard as he could. He would come in every month for his chemo treatment and since he was on disability, everything was paid for including his apartment, I could stop by for dinner sometime, don't worry he always had food at his place, he made sure I knew he came in once a month and had for the last 7 years. The whole time he was talking to me he couldn't sit still, he must have sat in some sort or matter in every couch or chair around me.
Jordy was called in for his appointment and I was left to sit and stand, and look at the sound and sit some more, grab another apple juice, you get the idea. Five hours in this huge waiting room, watching people come and go while I just waited. Brenda will tell you I'm not the best at waiting and I was wondering how impatient a patient could become.
I had arrived at 11:23 Pacific time to the Seattle Cancer Alliance, a huge complex that has everything you could possibly think of for curing, studying even probably causing cancer. At 4:45 in the "friggin" afternoon I was finally called in for my 2 PM appointment. I was thinking, for everything I had gone through this better be earth shattering. It would be......earth something all right.
I was ushered to a room, where I had the most fantastic view of one of the moldy pillars of I-5, yes it's wet in Seattle even when it's dry. I waited there for about another half hour until Dr. Pagel's assistant came in. He was a young guy about my height, spiky hair and glasses, everything you could possibly imagine a Seattle intern would be.
He had all my records (the collection of my greatest cancer hits since 2005), I had filled a complete report about everything I knew about my cancer. It was all there in writing for anyone to read. So Dr. Intern proceeds to sit and ask me every question I had just filled out on the questionnaire.
Now as thouhttp://liteonline.com/wp-admin/post.php?post=43876&action=editgh that wasn't irritating enough, he proceeded to say "Uh Huh" after every sentence I said. Never looking at me, just writing and saying "Uh Huh". So I started screwing with him and only answering in half sentences, kind of like Captain Kirk. He didn't even blink, just wrote never looking at me saying "Uh Huh," so I said "my butt hurt after the bone marrow draw and I couldn't sit to poop. and that my nose itched, that's why I pick it." Nope nothing, just the same stupid thing. I started looking for his battery pack, but couldn't find it.
This went on for the entire questionnaire, the one I had carefully filled out, neatly with handwriting a second grader could read.
So far I had ridden with Ma Barker from the airport, waited almost six hours for an appointment that was almost three hours late and had to deal with Dr. Intern, who really needed to go back to "Patient Relationship Class." What possible could happen that would make my day any merrier.
Before my next appointment with Dr. Sawyer back in Boise, I had to get another scan. If the tumors were still there or if the cancer was in my bones or blood, I would do chemo. So the tests were done and I was scheduled to see Dr. Forsythe first and then Dr. Sawyer
Dr. Forsythe came in with my results from the bone marrow draw and blood test...nothing. There was no sign of cancer at all. She asked what I was doing and I filled her in, at which point she looked and me and said "I'm a doctor, not a researcher. I don't know what or how you did it, but don't ever let anyone talk you into chemo. It will kill what ever your body is doing."
Next up was Dr. Sawyer. Now he was the one I had the bet with. I knew everything was clean, but there was still a chance the tumors were there. When it comes to tumors, they know exactly where they are, there is no mistaking it. To mark tumors, they make a small tattoo where they want to do radiation. I had those done in the spring so all we had to do was compare the scans.
Dr. Sawyer came in with the scan results and all 5 tumors were gone. There were only a few cells from the largest one left and since it itched like mad, I decided to get the 18 doses of radiation. That's all that would be needed. He was amazed. He had watched tumors vanish before his very eyes and finally he gave in, no chemo.
I finished the radiation therapy the crew went to find Dr. Sawyer to be there when I rang the bell and while they were gone I slipped out without ringing it again.
Five years later, I have a new tumor on my back now, it's on my spine and is about the size of a golf ball. In a few weeks I will be heading back to Dr. Burr to biopsy it and have it sent to Dr. Cole to find out what it is.
If you look real close you will see me standing behind the photographer.
I'm at Axiom off 84 and Meridian road yesterday afternoon, when I remembered to call my doctor to get this tumor on my back checked. Well I was working on my back when the tumor reminded me it needed some attention.
I called Ada West Dermatology, Dr. Burr is there and he has taken care of my other tumors. I expected to get the "well we don't have anything open for awhile," which was fine with me since we are booked solid for the next 3 weeks. That turned into "We have something open tomorrow and Dr. Burr wants to see you right away," when I told them the tumor has been causing me some minor pain every once in a while.
Call me nuckin futs, but I'm not worried about it. Dr. Burr will biopsy it, we will find out it's some sort of Lymphoma and he will either remove as much of it as possible and I'll get some Godzilla Zapping.
I will probably be getting Radiation Therapy on my spine in the middle of my back. So let's take a moment and imagine what kind of superhero you would be if the zap-o-matic turned you into one. I think Captain America would be my top choice, followed by Batman, Tony Stark, then Superman. The other superheros are all limited to one main power where these guys are either rich or have it all.
I got a call Sunday night from Dr. Burr. He read my post (My Life With Cancer, They Never Call You In To The Office When It's Good News (Part 5). Maybe because we have become friends he also didn't feel the need to have me in his office, well along with the fact he knew I wouldn't freak out and I pretty well had it pegged.
We are going to go through round three. I have a tumor on my back, just under the top layer of muscle on the spine. Since I no longer weigh almost 300 pounds it's easy to find. I can't imagine trying to not only find but get to these things weighing that much. When I was 290, I had a great big fat hunch on the back of my neck going down my back. I looked kind of like a gorilla. But back to our story.
We are going to meet and figure out a plan. I've been down this path before so I know what needs to be done and Chemo isn't a part of it. I'm thinking, Dr. Burr would remove all of the tumor he can (it makes him sweat real bad). Then I will go to MISTI (would go to St.Al's Cancer Care Center except my doctor moved over to MISTI) for some radiation.
I'm not fond of the radiation, but I don't want this growing back. The part I hate is all the poking and prodding I'm about to get. Well that and everyone talking to me in a whisper. Really, you whisper when you talk to me, ya' gotta' be kidding.
For some reason when you have something serious people whisper at you. The more serious they think it is, the more they whisper. Let's put together a chart.
CAT Scan machine, you have to fit in that little hole.
Once you're diagnosed with cancer everything becomes very serious, which goes against pretty much everything I am. While Dr. Sawyer was having the mandatory consultation, he looked and me and said, "I know what you're going to say, but you really should consider seeing a medical oncologist about chemo." At that point it was game on. I told him since he knew my answer, why put that poor doctor through the pain. He probably will just for the grins and giggles.
He really tried to make me admit how serious my cancer really is. I would be willing to bet he even took an extra class in sincerity, because he was pegging the serious meter, but I just can't be cancer doctor serious. I have to do this my way. (cue Sinatra, not Elvis)
Well part of the serious conversation was getting a CAT scan. I'm more of a dog person, OK bad joke, but I am. Something most people don't even consider is telling your doctor where you want what done, but you can do that. When I told them I wanted to get my scan at the Imaging Center of Idaho, you could have heard a feather bounce off the floor. You see hospitals hate losing that much money, especially when it's pretty well a slam dunk. It took probably about 5 minutes for it to sink in, then they couldn't find the phone number for them, I had to give it to them. They really hate when their sure shot is blocked.
I like the Imaging Center of Idaho for many reasons, but one of the main ones is they have the latest equipment and they will save you and your insurance company money.
A CAT scan involves you getting an injection of some sort of stuff that makes tumors stand out, then shoving your body parts through a round machine. Well that's the technical explanation.
The solution they use to make the cancer stand out also makes you warm for a couple of minutes, from what they say it's like having a hot flash. I had two of them this time. It also makes your mouth taste funny and then everything smells like the Port of Angeles, yes I smelled the last port I took a cruise out of and come to think of it the CAT scan cost about the same as that vacation.
I got a disc copy of my CAT scan so I could see it on my computer. From what I can tell, I have a lot of stuff running inside me and I have no idea what anything is. Guess I'm gonna have to depend on a doctor. I just wish they wouldn't be so dog gone serious, next Tuesday I find out what all those things running inside me are, good or bad.
This one will never fly at Disneyland, it's way too slow.
It's been an interesting week waiting for the results from my CAT Scan and from the Mayo Clinic on my tumor. I realized today that I am stressed thinking about it. I have to go through radiation and the doctors want me to do Chemo, even though there is no evidence of cancer anywhere else in my body.
So as I'm sitting here typing this, I'm also playing with a canker sore inside on my lower lip. There are only two ways to get those, stress or virus. I'm going with stress. The doctors keep telling me I'm doing a great job fighting this, but they don't know how I'm managing to keep the cancer confined to the tumors. The problem is for the most part doctors don't really listen.
Case in point, when I was in Seattle with Dr. Pagel's assistant, didn't listen to a word I said. He asked me questions I had already filled out on the question form, so he was looking at the answers. So as he was asking questions, I would say things like "only when my butt itches" or "Every Sunday during football season". Since he didn't even look up and kept saying "Uh Huh" even while I was talking, I knew we was on autopilot.
That's what I love about Tim Sawyer, he listens, he wonders why things happen, he is stuck in the world of medicine and all its rules, but he still asks why. Tim may disagree with how I'm managing my cancer but he knows I have firm beliefs in how I want to do it and respects my decisions. Tim is still very skeptical of how I'm doing it, but he is only because it's something he hasn't studied.
All the doctors including my Guru, Ryan Cole, want me to get a bone marrow draw. A bone marrow draw is a real pain in the @$$. The doctor has to go all the way to the center of the bone to get some bone marrow. The only way to do that and not break any bones is to take it from your hip area. If you want they will give you something to take the edge off, even so it's kind of interesting feeling your bones getting scraped. It's the last test they have to try and find anything besides the tumor. Then they will start asking questions.
I didn't give an update on my final visit to MISTI. (Click here for MSTI website) December 16th I met with Dr. Norm Zuckerman at MSTI. After everything was said and done, I got the all clear, with a "I would like to keep an eye on you." He was intrigued at how I refused Chemo and was still going strong.
I really expected to get a lecture on Chemo, but no it didn't happen. It threw me for a second, I was waiting and when the chemo pitch wasn't thrown, I almost fell out of the batters box, now that was a curve ball. It was refreshing to have a doctor who wants to see what the future holds. So that's what we are going to do, wait, watch and learn.
Usually a person having Lymphoma for as long as I have, finds themselves fighting an uphill battle. I've gone with the approach of making the body strong so it can fight the cancer, rather than killing it with Chemo.On top of that, I'm not in the mood to go bald. (We'll talk about that in the next section)
For the last 8 plus years all I had heard was "If you don't use this Chemo or that Chemo, you will die." I even angered a renowned Lymphoma Doctor in Seattle, because I told him "Doc, don't make much sense to me to kill a whole yard just to get rid of a few dandelions." He was livid that I even challenged me, alright he was flat out p!ssed. I still got charged for a dose of Chemo I didn't take.
I feel refreshed by the fact I have a doctor who not only is reluctant to use Chemo, but wants to learn by my approach. To Norm, I look forward to working with you.
I alluded in my last post that I didn't want to go bald...well I don't. Sure I have some grey, OK allot of grey, but I've earned every one of those grey hairs. Just having to deal with Cancer bills will turn you grey, let alone having to deal with the stupid stuff.
As for Cancer and baldness, Cancer doesn't cause you to be bald. Most people don't know that. It's kind of like Santa, too many people don't realize Santa is real, going bald from Cancer isn't. I know it's a shock, but you'll get through it.
Now here it the real story...People go bald because of Chemotherapy, not Cancer. Chemotherapy or Chemo for short, is designed to poison cancer. Along with killing cancer, it also kills the human body. So Chemo is kind of a gamble that the doctors can kill what ever kind of cancer you have before it kills you.
Think about it, if Chemo had the disclaimer that other drugs do, let's say male enhancement. Can you imagine that little blue pill with this for a disclaimer, "Chemo may (will) cause, Baldness, Mouth sores, Loss of appetite, Nausea and Vomiting, Anemia, Constipation, Infection, Memory Loss, Nerve Change, Pain, Swelling, Change in Urination, Fatigue, Diarrhea, Bleeding and Looks from people who think they can catch Cancer from You." Thanks doc, but I'll just work out, lose weight, get healthy and let nature take it's course.
So my approach to fighting Cancer is, "I would rather die fighting, than die feeling like S###." On top of that, I'm keeping these grey reminders of why I'm alive. Some day when I go to my grave, I'm not going to be sick and BALD.
Thanks for reading my cancer ramblings.
I believe in modern medicine, I also believe our government in an effort to keep us safe, ties doctors hands and keeps them from being able to heal as well as they could. Dr. Zuckerman from MSTI along with Dr. Sawyer are on a need to see basis, if I have another tumor pop up, I will see them. They know I keep track of my health and know what is going on better than anyone.
If your were to ask me my secret to controlling my cancer, it would be Co Enzyme Q10, Green Tea Extract, watching my diet, sweat inducing exercise everyday, using my mind to destroy cancer and faith that there is a higher power that helps.