10:20 pm | No Comments » |
I gots options. At least that’s what the Guru told me the other day. That and I have a new tumour, sorry “lesion”, in my right arm. Otherwise the MRI showed marked improvement. Explains the pain in my shoulder and elbow. Minor.
Now for the options. Remember when I said I was going to miss Thalidomide? Uh uh. They are keeping me on that. I could try a stem cell transplant with my own. They are skeptical that they can harvest any. Or, I can try a transplant with my brother’s. The infamous Plan B. Or, I can try to get access to a new trial drug, which through all indications would work. Or, I can go on a maintenance chemo therapy. Specifically, the drugs I was on, in lower doses and minus the mustard gas. Finally, there is a novel therapy coming to trial next year that looks interesting. Imagine! Next year. Five months ago they weren’t sure I was going to get through the summer. Now they are talking about next year.
The crappy part is I have to make a decision. It’s been simple up to now. Take everything they throw at you and get on with it. No decisions, no chance to make a mistake. I’m still alone in this so I have no one to blame if I screw it up. Two things – I am getting tired of pills and I want to shorten the list. So, I have set the wheels in motion for harvesting my own stem cells. I have to have a line put in. Once that is in place, it’s two weeks of fun. Then it will either be go or no go.
The Guru thinks maintenance chemo is the best option. I am such a good listener. My hearing is shot, so I think that is what he said.
It’s easy to get all bent out of shape over stuff like this, till you get humbled by hearing of other people’s struggles. Like the family that lost their home and everything in it to fire. Or the family dealing with the tragic loss of a child. The mother trying to keep a family together. People facing financial ruin. Cancer’s easy. Life is hard. I can only offer one piece of advice. It’s what gets me through. Don’t get overwhelmed by the big picture. Break it into small pieces. Then put your head down and step by step fix one piece at a time. Enjoy each little victory and move on. Never stop moving on.
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May 9, 2013
8:43 pm | No Comments » |
I do some of my best thinking in an MRI. I am not claustrophobic so I find the tight confines rather cozy. Noisy? Yes, but I can fall asleep. Staring at the bland pastel of the interior, your mind can mull over a lot of stuff. I was trying to figure out why I was there. MRI’s are not easy to get. I usually wait six weeks. This time, fifteen days. Obviously it was considered urgent. Yet, I have to wait another two weeks before I see the myeloma guru to plan my next move. If I hadn’t complained it was going to be seven weeks. I miss being critical. Things happen fast. No waiting. No wondering. You just get on with it. Now I am in limbo. The chemo in the hospital has ended and I have one more dose of two drugs I take at home. The ones I hate. I have to get motivated to swallow those things one last time. Then, nothing. I sit and wait. I don’t like waiting. I want to get on with it.
As the magnets banged around my head, I tried to figure out what comes next. The guru will want to do a harpooning of his own. Then he will want to start me on GCSF. Not a bad drug, it just makes you achey like the flu. It’s job is to boost production of bone marrow. Granulocytes specifically. Then they will see if I can produce stem cells in a quantity sufficient to harvest. I have no idea how long that process takes. I know the guru doesn’t hold out much hope for success. When it comes to me though, he has learned to bet against the odds. The other option is using my brothers stem cells. That is the guru’s last choice I think. Then there is the possibility of a new drug. The grandchild of Thalidomide. That line of drugs has worked well for me, so who knows. It might be worth a try. The drawback with more drugs is that it doesn’t give my bone marrow a chance to rebuild. A successful transplant should give me a few years of nothing. Just a chance to get healthy. Hmmmmm…
I am going to miss Thalidomide. You sleep like a log. And dream, man do you have awesome dreams. I won’t miss the numbness or the sight and hearing issues and of course the package. Yup, the package. You get twenty-eight capsules in a package. It is a blister pack with five fold outs. Two have fourteen capsules each. You need the strength of a God to bust them out. Wouldn’t want them to fall in the wrong hands. The other three fold outs are plastered with pictures of deformed infants. Then to really hit you over the head there is a double page information sheet on birth defects. I get it already. As far as I know the only people that take Thalidomide are older people battling terminal cancer. Why they have to bear some guilt for tragic birth defects I do not know.
Oh well, time will answer all questions.
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April 24, 2013
9:16 pm | No Comments » |
Happy birthday to me. I had another birthday recently. When you get diagnosed with a terminal illness, birthdays take on a new significance. They no longer denote a passage of time. Rather they become your scorecard. Another birthday another battle won. You’re still in the game.
I learned today that as a somewhat belated present, I get to be harpooned again. Why so soon? Well my doctors are dumbfounded. Shocked even. The last biopsy results are in and if it is accurate, I have kicked cancers butt – again. Not just a little. A LOT. Myeloma concentration in the five percent range. Not bad considering the 90+ percent I was dealing with when things were at their worst. The Docs would have been pleased if I had lowered it to 40 percent. I gave them a clean slate to work with. Now I don’t have to hear that my options are limited. We can choose the best route forward.
I have cycle 18 to start and finish. That should be the last. The end of one phase and finally a dim light that tells me there is an end to this tunnel. My life is out there. Hopefully sooner than later I can resume it again.
While I am quite chuffed about this, it is just the first step. Now comes the hard part – making the right choices. None of the next treatment options are going to be fun. They may make chemo look like a walk in the park. But, they will give the best chance of putting a great deal of time between now and when it comes back again. It will be back. And when it comes back next time, it better bring its friends. Because if that’s the best its got, I’ll kick its ass again. I’ll be stronger and smarter. I’m made of rubber. I bounce back.
I hope the lab didn’t make a mistake. Nah.
PS. My son got the highest mark in his class for his speech. Now there is a real present.
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April 22, 2013
9:57 am | No Comments » |
You Can Be A War Hero
Every day there are hundreds of thousands of men, women and even children that fight for their lives. They fight night and day and many people fight for years and years, to try and get rid of the enemy. There are over 1000 different battles these warriors can fight. They try many different kinds of weapons, but sometimes theses weapons don’t work. And sometimes only a few will win the battle for them.
One of the strongest weapons that one of these warriors can use to battle this enemy is stem cells. A stem cell is a type of cell unlike the others. It’s role is to basically be the mother of new cells that are needed in the body to fight this smart and strong enemy called cancer. You would think, “Why don’t we just make stem cells and help these warriors?” But that is the thing. You can’t just make them, they come from the bone marrow inside the bones of your body. Also, not all bone marrow is alike. So a match has to be made with the warrior. A warrior may have someone give them stem cells to fight the enemy, but if it is not just like theirs it won’t work for them. That is why it is so important for everybody to donate a sample of their bone marrow so that the warriors who need a match will get their secret weapon to battle the enemy, cancer. Every one of you, right now, possess this secrect weapon in your bones. You could be a match for someone in your family; like my uncle is for my Dad or for someone you do not know who may life half-way around the world.
Just think, by simply donating a sample of your bone marrow your could help one of these warriros win their battle against cancer and by doing so become a Hero!
*My twelve year old son was tasked with giving a speech to his class. This is what he came up with. I often joke with friends that I am waiting to for the day that I get something back from having children. I think I got my answer.
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April 10, 2013
8:28 am | No Comments » |
I met with my kidney specialist the other day. She is pleased that everything seems to be headed in the right direction. So pleased in fact that she has given the hematology people the go ahead to up my cyclophosphamide dosage, since my kidneys can handle more. Which will lower my kidney function and keep it in the gray zone. While making me feel like crap.
It should be illegal for one person to have this much fun.
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April 8, 2013
10:55 am | No Comments » |
I was driving with one of my sons the other evening. We passed a sign that was advertising a fitness business. It stated that exercise was like life. The harder it was the stronger you got. My son non-chalantly said to me “You’re going to be pretty strong.” My initial shock that he had even noticed the sign was quickly replaced by rage. I was so angry that as a father I had given my son so much to think about. No young boy should have to think about how hard his father’s life is. The big “L” on my forehead started to sear into my skull. I quickly told him that my life wasn’t so hard and many others had it worse than me. He seemed okay with that.
Why do tears stream down my face at hockey games? Stuff like this. It is the slaps in the face when you know you have failed that get you most. Why it happens when it does I do not know. Crowds are bad. I feel most alone in a crowd. The person who doesn’t belong. The tainted one. The one who just wants to crawl into a hole until everything passes and they feel better. The one who tries to put on a brave face and fit in, but deep down knows they are not fooling anyone. I had never imagined that I would ever feel this lonely. It is a solitary battle and I am the one who got me in this position and I am the only one who can get me out.
Strangely, home, family and friends are not my refuge. Home is where my inability to take care of things taunts me. The upkeep, the little maintenance jobs, all the things that I should be on top of just stare me in the face everyday. I will get to it someday, but someday is becoming further and further away. Family and friends, even though they love and care for me, make me feel even more like a failure. A good father/husband/son doesn’t put others through this. They get on with their life and don’t drag others down with them. The only place that I truly feel at ease is the Pump Room. I don’t have to put on an act. I got over sitting outside until I thought I looked good enough to enter. Now, I show up, get treatment and leave. They know more about what is going on with me than anyone. They know what the drugs do. They know the outcomes. Nobody says anything that isn’t truthful and sincere. They don’t judge. It is all very business like and straight-forward. I breath easier when I am there.
Strange isn’t it. You get sick and people are supposed to take care of you and make you better. Not in this case. Nobody can do anything for me, and I don’t want sympathy. I don’t even mind when people say things that they probably would regret if they knew more. The other day a worker was in from another business. He was telling me of a co-worker that had passed away after being diagnosed with “bone cancer”. It had happened fast and the worker was still shaken that he had lost a friend. It sounded like Multiple Myeloma. The worker had no idea about my condition. I just responded that it was a tough break for his friend. Nothing more needed to be said. It didn’t make me feel worse hearing that someone else had succumbed to the disease. I know the odds. It wasn’t inappropriate that the worker was talking to me about it. He didn’t know and if I can fool him into thinking that everything is okay with me all the better.
Two of the boys won their championship games in a hockey tournament. One boy scored the winning goal. Where was I? I was at home wrapped in a blanket. Father of the year. I could have gone. Should have gone. Maybe my son was wrong. If my life was so hard then I should be stronger. Strong enough to battle through these stupid drugs. If life is about memories, I blew it. My sons memories are of a vacant seat where there father should have been. Mine are of an empty house and a lazy dog at my feet.
The tears will keep coming. Then they will stop. Someday.
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April 5, 2013
11:58 am | No Comments » |
Well as far as I know it April is Cancer month. Seems fitting that in the same month that there is usually a religious festival celebrating a resurection, that you also support cancer. I have been accosted by numerous fund raisers pushing dafodills at me. Don’t get me wrong, I like flowers, but as I have stated before, I am not a big fan of the Cancer society and there bloated administration. Big pharma has done more for me than they have. The society does have some good programs. The Lodge That Cares is a God send for people that come from other areas.
Suprisingly I have not been approached to be the poster boy for the society.
On my side things have been “interesting”. They upped my dosages a couple of weeks ago. The party line is that it is because I have gained weight. My body mass now says I can tolerate more. I think there is a bit more desperation involved. I am waiting for another “kitchen sink” to be thrown at me. You would think that a measley 15% increase in drug dosage would be a walk in the park. My body says different. It has been a rough couple of weeks. My Doctor asked if I could handle it until the next bone marrow. I love that. Could I handle it? Who do they think they are talking to? I am in it for the long haul. If they asked me to slowly push a darning needle through both testicles because they thought it may help, I am their man. Do they really have patients who refuse uncomfortable treatments? Oh yeah, I forgot. They are the dead ones.
That sounded a little self-serving, but…but nothin’. Call me bitter. Or Holier than thou. Time will tell.
I reminded my Doctor that the “next” bone marrow was actually on that visit. So, I got harpooned again two days ago. The results should be in next week. I left it up to my Doctor. I told her that if it was good news, call me so she had something upbeat to talk to a patient about that day. Otherwise, I could wait until our next clinic visit. I am not expecting miracles. The day of reckoning is coming. I can’t live with the status quo. Cycle 17. It will only last so long anyway. Better to roll the dice early than to wait too late. Then I really won’t have any options. That’s the price I am paying now. Being smart and at the head of the curve has been great to now. I have played the new and novel tharapy cards very well. Unfortunately, the new and novel therapies that all newly diagnosed Myeloma patients receive now, are old hat for me. Been there, done that, bought the t-shirt. There is nothing earth-shaking on the horizon.
Here is an interesting tidbit. Doing a little research on my favourite anti-cancer drug – cyclophosphamide – shows that it was actually derived from mustard gas. Yup, that scourge of the trenchs and banned by Geneva as a nasty way to kill people, even in times up war, is geefully given to cancer patients. Most alkylating agents came from mustard gas. Alkylating agent. There is something you never thought you would hear about when you were brushing your teeth this morning. It actually refers to the mechanism the drug uses to kill cells. Unfortunately it is not cancer specific. It targets all fast dividing cells. That’s why you lose your hair. It is also quite hard on the kidneys. I wish I had the confidence that my nephrologist was on top of that, but I don’t. I will mention it again at my next appointment.
So, cancer patients, lets celebrate April. Lets celebrate the gift that keeps on giving. Lets celebrate the fact that we now know more about cell biology then we ever thought possible. Lets celebrate our new found pharmacological knowledge. Lets celebrate the fact that we can manage our care, tests and appointments with the best of them. Lets embrace the emotional roller coaster. Rejoice in the flow of tears that unexpectedly stream down your face while sitting in a crowd watching one of your sons play hockey. Something in your eye. Hard to explain otherwise. Lets celebrate the unease that we will live with the rest of our days. The fret over every new ache or pain. Is it back? Was that there yesterday? Will it be gone tomorrow? Lets celebrate the way that cancer has enriched our lives. It is the new companion we never wanted. Ready to take up an extended stay on our couch when we least expected it. Its April darn it. Drink it in.
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March 14, 2013
10:58 pm | 1 Comment » |
Sitting there the other day, getting poked for the umpteenth time, rehashing the same old situation and going over my limited options, I was struck with a thought. I wondered if I would do it all over again. If I could turn back the clock, would I try and change something so I never had to deal with this?
A sane person would say YOU BET. Me. I have never been considered sane. Sure, it would be nice to be normal again. But, so much has happened. Some good some bad. I have learned so much over the past year. I have learned that I cannot be beaten. I can be knocked down. I can get depressed. I can get angry. But, I never lose hope. I get back on my horse and keep going. I may lose, but I will never be beaten.
An amazing gift I have received over the last year is knowing that my life has mattered. So many reach the end of their days wondering if anything they did in their life mattered. Sure it matters to those close to you, but the nagging question is whether it mattered to others. Maybe even people you barely knew. I have found out that I have mattered. Just being me and doing what I thought was right has made an impression on others. Wow! In response I have been given more support and kindness than I think I deserve. How do you top that on your Christmas list?
I have learned that doing the right thing is hard. Putting your head down and placing one foot in front of the other, day in, day out, is not easy. It takes a lot of effort. Somedays, all my effort. Yet, nobody promised that life was going to be easy. You get back what you put into it.
I have some amazing memories from the last year. Some make me smile some make me cry. I wouldn’t have them if none of this had happened. That’s what life is all about, isn’t it? Making memories. As you go through life and look back, it is the memories that matter. The good and the bad. Too few memories or to many sad ones and you need to rethink what you are doing. A healthy dose of each – then you’re livin’ large. Taking what life offers up and running with it. Growing with each victory and gaining strength from every setback. Being a better person tomorrow than you were today.
So, do I wish I didn’t have to take these chemicals? Yes. Would I like to feel normal again? Sure. Do I worry about what I have missed or given up? You bet. Do I wish it never happened? No.
Questioning my sanity? I would.
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March 5, 2013
6:07 pm | No Comments » |
Metastic colorectal cancer. Not one of the ones that you want to hear. In the grands scheme of cancers that is. Yet here I was being told that a friend that I had gone through school with was dealing with it. She was in good spirits. As good as you can be after having the stuffing beat out of you by six months of chemotherapy. And she looked awful. Thirty years older than her drivers license attested. She was always so upbeat. So energetic. The kind of person you assumed would always be “young”. It broke my heart.
They didn’t catch it early. According to her it “was everywhere”. She gave me a hug and I hugged back as strong as I could. I looked her in the eye and told her she was going to beat it. She stared at me and for a brief minute I could see that she believed. Her mother was with her. She believed. Or wanted to. Then the nurse took over. Yes, she is a nurse. She was my nurse a year ago when things were not looking so great. She was so pleased that I was doing better. I told her that if it couldn’t kill me, it didn’t stand a chance against her. It made her laugh. The training and experience tells her another story. She just has to forget about that and move on. I hope she can. I think she can.
She said that when she goes back to work ( a good sign ) she will not be able to administer chemotherapy again. Now that she knows how badly it makes patients feel, she said she won’t be able to bring herself to do it. I told her she was always a bit of a sadist anyway so she would be fine. You have to look at the big picture. No matter how unpleasant, you have to give patients something they can use to fight back. When it works people will forget all the bad stuff and revel in victory. That’s what I am hoping for. Strange, but when it is all said and done you are stuck with the devil you know.
And I still feel lucky.
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March 1, 2013
9:15 pm | No Comments » |
The pump room really opens your eyes. There was a lady today who didn’t fit the mold. She was sick, that was for sure. I’ve seen that look in the mirror. She was elderly. She was frail. Her prognosis was probably not very good. Yet she was alone. That doesn’t fit. Almost everyone has someone with them. Those that don’t are usually the ones who are there for minor stuff. They look healthy. They don’t limp when they walk. They’re the ones that we envy. Older people always have someone with them. Two nurses made sure she was comfortable, but she was alone. I wanted to talk to her. Before I could she was asleep. I hope someone showed up after I left.
It’s funny how little things trigger memories. Last spring the pump room was undergoing renovations. As a result they had temporary rooms set up around the hospital. There were days that I was spent walking to a room. I wouldn’t go in. I would look for a chair in the hall or if none, I would rest against the wall. When I felt stronger I would go in the room. I am still not sure why, but I wanted to show up acting as healthy as possible. Fooling only myself I guess. One day I was sitting outside completely out of breath and in a cold sweat. A nurse came down the hall and quizzically asked me what I was doing. Not knowing what to say, I said nothing. What could I say? She looked at me, put a hand on my shoulder and said, “Whenever you think you are ready.” She then proceeded into the room. Angels. They are everywhere.
I hope this old lady has an angel.
Across from me sat a lady doing needlepoint as a chemo bag dripped into her son’s arm. Thin and pale he seemed in good spirits. Not bad for a young man I would still think of as a boy. If he was finished high-school I would be surprised. At that age it was probably leukemia. So young. My first thought was I wish I could take his place. Then I came to my senses and looked at it from his side. Not a great trade. One chemo for another.
You have to consider yourself lucky. I do.
An interesting idea though. Taking on a young person’s illness so they can live their life. Kinda the ultimate organ donation. It’s not that one life is worth more than another. It’s about giving a life a chance. I hope that boy gets his chance.
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