This chemo thing constantly amazes me. I think since the length of treatment is so long, you start to realize the challenges that arise outside of the disease and cure.

When you get sick, either cold, flu or cough, you know that there are a few days ahead that you would like to forget. You want the world to go away, or in some people’s cases wait on you hand and foot, and you don’t want to have to be available to anyone for anything; until you feel better. So what if you cut yourself off from the rest of the world for a few days? Who is really going to miss you or mind?

But, this is different. It goes on for months and all the while you just want it to end. You are the only one that can deal with it or do anything about it, so it sets you apart. You are all alone on this journey and no matter what anyone else says or does, it doesn’t make it any easier. There is a real mental battle that you have to fight in order to make sure you don’t alienate everyone. As hard as it is, you have to put a smile on your face and be polite. Others, who really do care, don’t want to hear your grumpy arse tell them to go away. It tends to put them off. Great wonder. A gracious sick person is much easier to take than a real bstd. You get more in the end. There will be more lifelines thrown your way.

You also have to keep involved in living. It is TOO easy to hibernate and wait until everything is back to normal. You have to keep involved or you risk losing touch. Remember, a lot can happen in eight months, Tom Cruise may get married again! Oprah could decide that she IS the Messiah. Facebook could be outed as the complete waste of time that it is. Anyway, I have felt better after working around the house, then collapsing in exhaustion, than when I have spent a day “taking care of myself”. (Note: Doctors may disagree) At least it makes me feel that I am still alive.

Who knew chemo would be such hard work? Har Har.

S.K.

Here’s the deal. We all go through it when we have to get into our lovely medical system. We don’t get any respect. And I place the blame at the feet of the doctors. How many times have you shown up for an appointment and have had to wait an hour or so before you are seen? How many times have you had to follow up to see if a referral has been made or a test scheduled? How many times have you had to wait and wait while test results were sitting in your doctor’s office? Too many times.

What gives? Why are we the patients, treated like an afterthought by the medical community? My time is as important as my doctor’s, yet I have to wait while they overbook clinic time. If they came into my business and had to wait hours, I would catch hell. They would probably choose to go somewhere else. I can’t. I have to abide by their schedule and smile politely as they try to get everything accomplished in a span of a few minutes. Patient centered care you say? Ha!

A patient who is going through chemo or cardiac care or any other serious ailment should not have to be their own advocate. Yet, each and everyday patients have to try and keep their wits about them to maintain control over their care. What a great healing process! Right now I am trying to coordinate one doctor with another so that I can possibly get a new drug for my next round of chemo. It starts in four days. Do you think I can pull it off? Should I really be required to? No. What we patients need is a little R-E-S-P-E-C-T. The doctors have to realize that it is us who are actually having to go through treatment. Not them. They deliver the treatment and we try and use it to get better. Who has the harder job?

So Dr. Guys and Dr. Gals, I love some of you, but you all have to wake up and smell the roses. They way you deliver care stinks and until you come to grips with the fact that we are people first and patients/numbers second, things will not get better.

S.K.

The medical and research community is starting to piss me off. I have always put up with doctors and researchers who look at you and spout statistics and do whatever they can to rain on your parade. It would be so simple to offer a little ray of sunshine, but noooooo they have to be the voice of doom and gloom.

Today I was reading an update on the AIDS conference in the US. They were focusing on a patient who was considered cured. The treatment involved was very experimental, but the response was rapid. As per normal the researchers at the conference were quick to point out that they did not think that this treatment would lead to a cure for everyone with AIDS. They did not want to give people “false hope”. Why the hell not?! You are talking about people who have been given a death sentence. They have had any hope taken away. Give them false hope. Give them partial hope. Give them any hope at all.

What a load. Do these people actually get it? They don’t have all the answers. They may gain knowledge in the near future that may point to a promising procedure where there was once false hope. Forget their arrogance, they do not know everything. False hope. Says who? If you are facing down death and false hope is all you have, then take it. Revel in it. Make sure that you know that there may be some light at the end of the tunnel. Hey doctors, what does it matter if your patient builds their fight on false hope? If they have hope, then maybe they will have the strenght to beat it. If it doesn’t work out in the end, what odds? Nobody is going to convict you of a crime for giving false hope. It is not even unethical. You are just admitting that you don’t know everything and maybe there is something new that may work. There are no guarantees and you aren’t giving any. So get over it. Feel for your patients. Even if you know the outcome, put a smile on your face and say to yourself that miracles can and do happen. It won’t hurt.

Thank God the nurses in the Pump Room are different. The other day one asked how I was doing. “Fine”, I replied, “but I get the feeling my doctor thinks I am going to die.” She gave me that look that you would give a fool and stated, “you are not going to die.” Thanks. Even if you are lying. You guys get it.

S.K.

You gotta love people. There are those that wouldn’t touch someone with cancer with a ten foot pole. Then there are those that don’t have the slightest inhibition towards telling you exactly what is on their mind. My cousin, his wife and son are home for an infrequent visit. When we got together, his wife gave me a big hug and said “Wow, you look a lot better than I expected!” How can you not warm up to someone like that. My only question was how bad did she think I would look?

Then you get the friends who look at you and say, “You’re so tiny now. Your head is to big for your body so we are going to call you “Bobble – Head”.” Well, my head may look big, but my neck works.

The best though is the person who looks you in the eye, wanting you to open your soul, confide your inner most fears, and says “so its terminal cancer?”. I look at them and say, “Not yet!” Terminal to me is the place you go to get stuffed into the economy section of an airplane. But, alas they mean well.

Interesting times. I have been described as looking like a triathlete, death-warmed-over, “great”, a dash mounted toy, and someone who is “not well”. I am trying to figure out which one actually describes how I feel. I am leaning towards “looks like crap”.

S.K.

Its okay to laugh when bad things happen. At least I think so. I have had some big laughs at funerals. I have cried at some weddings. Like my own. Just kidding. Some may call me irreverant. I see it as being able to laugh at the absurdity of situations. I would never laugh in the face of a grieving widow or family member. Unless they just told me a joke. Then I would share their need for a break from sadness and laugh my arse off with them.

Cancer is a funny thing. You can know people for years and you are their buddy Joe. Then they hear you have cancer. Suddenly, you are no longer their buddy Joe, you have become Joe Smith – with cancer. People have no idea how to deal with someone with cancer. I have found that a few jokes puts them at ease and maybe makes them remember that oh yeah, my buddy Joe is still here.

Laughter has great healing powers. And it beats the hell out of feeling sorry for yourself: whether you are going through something on your own cancer or dealing with the pain of someone else. You can wonder “why me?” or you can laugh and say “I can’t believe it took the evil forces this long to find me!”

Life is full of bumps. As a teenager most of them were on my face. Hard to laugh that one off. But there were things that would happen that would put a smile on my face. One recent bump was when I was told by a friend that his 20 year old daughter was diagnosed with cervical cancer and they were waiting for the tests to come back to see if it had spread to her liver. Wonderful. Then it dawned on me that she may be the one person who would change places with me. She would have a marriage and children and at least see Fifty at the top of the hill. I started to laugh. How absurd that I would ever feel sorry for myself. I mean really. There are many at children’s hospitals across the country who never experience their first kiss. And then there is me. A joke really. We just don’t see it.

That’s not to say you have to laugh. I write things I hope enlighten. It is nice if it also puts a smile on people’s faces. They can either laugh at me or with me. I don’t care. Whatever works. They can even think it is in bad taste. That’s okay too. Or they can hate my guts. Perfect. To really win a battle you need to have a solid enemy. If I am the one that makes people fight harder, for whatever reason, then I am a happy man.

As a told a loved one a long time ago, “I am not going to die yet, people still need me around for years so they can continue to call me an arsehole.” I still believe that.

S.K.

Bessie from Idaho writes: “Recently you mentioned that walking in bare feet was like walking on a bed of nails. Why did you keep walking?”

Well Bessie, it was because curling up in the fetal position and crying my eyes out just didn’t seem manly. Seriously, lets talk about pain. Pain is something your smart brain uses as a warning system that your stupid brain is doing something harmfull again. Smart Brain – “Hey moron! We are supposed to use a stick to roast marshmallows. Not our FINGERS.” Stupid Brain – “Whaaaaaaaat? We’re almost done.” See, a perfect feedback system. In the case of the bed of nails, my smart brain was going to give my stupid brain a cumupence, until it realized that it was just a case of the wiring being messed up. No harm, no foul. As a result the Smart Brain said – “Hey stupid, this is going to hurt but just keep walking.” Wherein the Stupid Brain replied – “Whaaaaaat?”

Twain from Timmins wrote – “Are you as sexy as you seem?”

Yup, I ain’t no mutt.

Bob in Oceanis wondered – “Are all your chemo drugs given with a needle? and How do you make yourself keep taking them?”

Stupid questions Bob. One chemo drug is given as an IV push or sub cue. The two, soon to be three others are all taken orally. One other drug I am on is an injection I take at home. There are 12 others that are taken orally either morning or night. How do you make yourself take something you hate? Well, you struggle. I do at least. Remember when you were a child and you were told you were old enough to take your own medicine? Remember how you would hesitate and feint until you finally downed the most vile tasting thing that you could ever conceive? Its like that. Your brain has a conversation, only this time it is in reverse. Stupid Brain – “Uhhh, I don’t think we should take that, remember what it did to us last time?” Smart Brain – “Remember!!! I was the one awake all night, while you slept!!!! Besides, its what we need to do.” That’s what it comes down to Bob. You do what you gotta do.

Sven in Trollhatten wants to know – “What’s the worst part of going through this process?”

Sven, Sven. There is nothing bad about this, it is all a growth experience. Weeellll, the worst part is having who you are and the rest of your life ripped away. There is usually no preparation period for cancer. Your doctor doesn’t come to you and say that next year you are going to need cancer treatment so get ready. It happens fast. In my case, even though I have been battling this for fifteen years, I was at a point where I was feeling fine and the doctors and me thought I was on top of it. It happened playing hockey with my buddies. I came off the ice and said to one of them that something was really wrong. Really wrong. Within the next six weeks my doctors had me in ICU cause they wanted me monitored around the clock. You go from having a life to fighting for it. There was a warning sign. A year ago a tumour appeared on my jaw that was irradiated. There is also a small one behind my right eye. While that did send up some red flags all other tests showed I was still in control. My radiation oncologist decided that the eye was not an issue. I told him that I was dissappointed. I had always wanted a parrot and if I was going to be bald and a patch over one eye, I thought it would be the perfect time. He smiled politely and escorted me out of his office.

On the plus side, I have lost more weight than I ever could have hoped for and most of my grey hair has dissappeared and not because I have lost my hair. Think of the marketing potetial in that.

Finally, Matt in Maine – “Are your going to die?”

“Yes. And so are you.”

S.K.

I met with the cancer guru. I am going to die. Its not going to be pretty. My mistresses are going to find out about one another and they are going to tear me to shreds. Wait a minute… that must have been one of my dreams. I digress.

I am going to die, but according to the new doctor, it is not as immenent as may have been previously thought. While my options may be “limited” they haven’t been exhausted yet. In fact he was quite pleased that I had shown a strong “clinical response”. Namely that my blood work and everything else seemed to show that the chemo was working quite well thank you very much. The kicker is that my bone marrow is still packed with cancer cells. I asked if this was a normal occurance. No it was not normal. It was “infrequent, but not uncommon”. Huh?

“Infrequent, but not uncommon”. Kinda sounds like me. In fact I think it would make a great line for a super hero:

SFX(Sound of rushing wind) “Look its CHEMO MAN, he’s infrequent, but not uncommon!!!” SFX (Sound of women swooning)

I am doing it again. Back to the point. In order to get the message to the cancer cells that I don’t want them and they should just politely die, he is going to add Thalidomide to the mix. Yup, apparently the horror of the sixties, championed for myeloma treatment by people like the late Geraldine Ferraro, can give some chemo therapies a kick in the patootie. Who knew? The tragedy is that I will not be able to have any more children. I will never be able to realize my dream of giving birth. Just kidding. I don’t want the children I have. Kidding again. Sheesh.

I will be reunited with my french pharmacists. The ones who dispensed the last drug I was on. The ones who will once again start telling me about how, while on Thalidomide, I will not be able to donate blood products or seamen and that I cannot have unprotected sex with a women of child-bearing potential. If I do, I have to notify them immediately so that they can slap my wrist with a ruler. Mademoiselle, if I ever had sex with a young woman of child-bearing potential it would be in all the papers. If she got pregnant, look out world wide web! Moot point.

So, the long and the short of it is three more chemo cycles and evaluate after that. I can live with that. As if I have a choice.

S.K.

“So, nothing has changed since your last visit?” the nurse asked.

I started on the litany of side-effects and stopped myself. “No, nothing.”

“Nothing.”

“Nothing you want to hear anyway.”

“Try me.”

I looked at her and stated, “Look, you have more important things to do than listen to me gripe about aches and pains and nausea. I am sure there are other patients here that really need to tell you about a serious problem.”

“You are my patient now, and I want to hear what is going on,” she said matter-of-factly.

“Nothing.”

She stared at me.

“Nobody likes a complainer,” I said.

“You have to tell someone about what is going on. You have to get it off your chest.”

“No I don’t. I can live with it and they can live without it.”

I proceeded to explain my feeling that people had to get on with their lives. Being the constant sounding board for someone going on about every little detail of their treatment was not beneficial. I have a family that needs to enjoy life, so I participate when I can and I disappear when I can’t. The same with friends and work. Everyone is free to do normal stuff and I don’t feel like a burden. There is this natural reaction to “turtle”. Haul yourself into your shell and wait until the trouble has passed. Turtle and you miss the things in life that you can still enjoy. It is a fine line between being a burden and not.

I am not sure she bought into it. However, she didn’t ask me any more questions. I think she knew that if there was something serious, I would mention it. Otherwise, I’ll just smile.

I meet with the new guy today. You never know. I might have a lot to complain about tomorrow. Or not.

S.K.

“If you had a choice between losing your hearing and losing your eyesight, what would you choose?” one son asked. The discussion that ensued was interesting to say the least. The wisdom of teenagers. Things then went south. “Well, what would you chose between not having our eyesight and not having a weiner?” My eleven year-old was adamant that he would rather lose his eyesight. “Really?” I asked in amazement.

“Really,” he replied.

I still couldn’t fathom this. “What do you do with YOUR weiner that is so important that you would rather not see!?”

“Babies! Lots of children.”

“You have those now?”

“Noooooo. Someday, I want lots of babies.”

“Children are highly overrated,” I stated.

He gave me that look that I always get when he thinks my jokes are lame.

Anyway, it brought back a whole bunch of feelings that I thought I had put away. I remember the insanity that followed my initial terminal diagnosis many, many years ago. At that time I would think about what I would make a deal with. I remember driving home and passing a house with a man sitting on the porch. He was in a wheel chair, with his bare, swollen stumps in plain view. The thought that went through my head was, “I could do that. I bet he isn’t going to die.”

Other times have passed where you get down or frustrated with treatment and you start conjuring deals. I don’t know if everyone with a terminal diagnosis does this, but I do. Dealing with the devil is crazy, but so is pumping poison through your system.

I have made one deal. I don’t know who it is with, but it is out there. That deal is: They can hit me with whatever they want. They can get their s***s and giggles out of watching me squirm, but they have to lay off my family.

I can live with that.

S.K.

I took a day off!!! Me!!! Imagine. It was going to be a day of tooling around Keji in a canoe. I thought. The consensus though was to go to an amusement park. What odds? I can have fun anywhere. The water slide was a bit of a challenge. I realized that this was the first time I have walked anywhere in barefeet since chemo started. Neuropathy’s are fun. Walking across a bed of nails would be an apt description for the gravel and asphalt path. He who gets chilled by a slight draft was also not looking forward to the cold water jets. Alas, I prevailed. Three times! And I had fun. It was a little disheartening to find out that the only set of swim trunks that would fit me was a pair of my 13 year olds 28′s. “Skinny with muscles” was the term one son used to describe my appearance. Before you ladies get in a lather, it is not as good looking as it sounds. “Emaciated with muscle strands” may be more apt. The voice of reason stated that most people wouldn’t notice since they hadn’t know what I looked like before. Gee thanks. She followed that up with “I think I can see lumps! Are they supposed to be there?”
“Yes.”
“What are they?”
“Lump lumps.”
“No, what are they? Do the doctors know?”
“Yes, the doctors know. They are something benign. Fatty cysts or something. I don’t remember. Lump lumps.”
“Hmmmmmmmm….”
The ride that I love is something called Rocco Planes. It is like a ferris wheel, yet you sit two-to-a revolving cage. The cage has a brake that allows you to stop it in any position. Get it right and you can lock it in place so you are actually going down the front of the wheel head-first. As your head and cage zip by the ground four feet away, you release the brake and your cage goes pivoting around all the way up the back side of the wheel. I think I laughed like a little girl all the way around. I know my sons did.

A great way to recharge your batteries. If I win the lottery I am putting one in my backyard.

S.K.