"First, let me say how sorry I am for your diagnosis. To be told you have cancer of any kind is never something you want to hear. When I was told, it took a while for that to actually register. Then even longer before it seemed real. That was three and a half years ago, and I still feel like it is a foreign concept. And now to be told I am done is almost equally as strange. I wanted to be able to reach out to you and tell you many things. As insensitive as it may seem to do this over email, it is a conscious choice to allow you your privacy. My privacy was one of the things I wanted most. I want to extend to you the courtesy of letting you digest this in private, without the world looking at you. There are few things I wish I could have known or told myself as I started the last three and a half years. If I may be so bold, please let me tell you.
When you posted the announcement on FB, the diagnosis was not yet complete. It may still not be. When the doctor told me, it sent me into a series of tests and biopsies with periods of anxious waiting and tormented uncertainty. Unfortunately, that does not end with the results of your diagnosis. This may be the single biggest unspoken thing. Through all of it, doctors and nurses will tell you what to expect in reaction to your treatment. But they are physical reactions. What no one told me was how I would be turned into a neurotic hypochondriac. There is a "wait and see" period for everyone and it is terrible.
Typically, people go through a round of treatment which consists of several doses of chemo or radiation or whatever. My chemo schedule was once a month for six months, then nothing for six months. That's the wait and see. At the end of that you go back in for more tests, blood work, and anything the doctor feels is needed. That period between your last dose for the round, and results from the tests is emotionally exhausting. Yes, the rest from the physical reactions is a very welcome relief. But the emotional drag of not knowing can be brutal.
No one ever told me. Not that knowing would have made me less anxious or emotional but maybe I would have had a little easier time knowing that was normal.
Next, I alluded to this already but privacy is big and also very emotional. You are now going through a very personal and emotional thing. It is not easy. There will be days when you are fine and feel okay. There will be days when you are not. You will feel sick. You will feel tired. You will want to retreat to your comfort zone(s) and tell the world to go to Hell. I realized that one day when I put on a hat not to hide my baldness, but to hide me. I just wanted to be a non entity for a while. Nobody talk to me, nobody look at me, just leave me alone. When people asked me how I was feeling or how I was doing, if there was any hint of intonation beyond a standard less sincere American greeting, I wanted to claw their faces off. I wanted to fight as if they were the representation of all my misery. As if fighting them would deliver the beat down I so desperately wanted to administer but of which was undoubtedly incapable. I hope that such emotion was not what came across. I hope my response was just as shallow as the question, "I'm fine. Thank you."
You may even feel that tendency to retreat from your close friends and family. Fight that. Curb that as they are there and just want to hold your hand. To help you feel better, to encourage you and keep you going. Let them. I have the bad habit of unintentionally feeling like my suffering is mine alone and it is stupid for anyone else to have "sympathy pains." But like it or not, it happens. Let it. It is perfectly acceptable to have your withdrawal time and days, especially as the physical traits of treatment become more pronounced, but shut out the out world. Not your family.
You will find that the world will not stop and wait for you. Bills are still due, children still need a bath, husbands still need to be told they're smart and important . And that is another important lesson learned. One of my favorite movie quotes of all time is from The Shawshank Redemption. Morgan Freeman's character said, "Get busy liven', or get busy dyin'." The principle of this is that we cannot choose what happens to us. But we can certainly choose how we react. With a diagnosis of cancer in any stage, the world gives you permission stop living. And you can if you choose. Or you can pick your self up, shake it off, and move on. That is not to say you will not fall down again. We all fall down. When that inevitably happens, if you look, you will see those around you that clamor to offer the hand to pick you back up. When this happens, sooner or later I always another favorite movie quote. This time Michael Cain as Aflred, to Bruce Wayne, "Get up. Yes you can."
I do not know the extent of your cancer. I do not know how the treatment will affect you. I do not understand the fear and loss you might feel at the prospect of a mastectomy. I will not sugar coat it and say everything will be fine. No one knows that. And I am sorry. But you can decide to keep trying. Decide before it happens, when you fall down, to get up and carry on. So what if the kids go an extra day without a bath. So what if you just have a pizza delivered because you are both too tired to make anything. None of that matters. Don't let such trivial things become the obstacles that trip you up.
Cancer became my way of life. I got used to it. I knew with earned precision when I would start feeling sick or tired after a treatment. I knew when that would pass. I knew when chemo brain was thick in my head. None of that is pleasant. But you can get through it. Sometimes, you may need to just hold one of your children to help you through the day. It's okay. At times you will live day to day with the relentless swelling of emotional tides. Find what helps you get through it. I have held my children. I started running. I have wept into the arms of my wife. I have over caffeinated to get through a day (or two). Whatever. Whatever works for you, use that as a tool to get on with your life.
Rely heavily on the gospel. I wish I could have done that. I learned in retrospect that I had gained a far deeper appreciation for the Atonement than I ever though possible. It should not be surprising. What you will go through is emotional suffering that will become a lens through which you can see so many others' plights in a more sincere manor. I do not know what it is like to lose a child like the Zohars. But I know what is like to suffer and to hurt. That compassion, I feel, must be the minutest part of the love our Heavenly Father and Christ must feel for us. Just as God had to withdraw while Jesus hung on the cross, they knew this suffering would be terrible for us and for them. But they have a far greater understanding of the eternal implications that we cannot see. Many times I have been on my knees weeping and wailing. Crying out in my anger and in my frustration, "why me? Why me!" Though I do not think we get answers that we can understand to all our questions, I have rarely had an answer as clear to me as was my answer to that question. And I lack the ability to fully explain it. Well, not without writing a War and Peace length dissertation. I will summarize only by saying that such suffering is ultimately for our benefit. And I apologize for the inadequacies of that statement.
Perhaps that is the most important of all to keep in mind. This life, with all it's ups and downs, is ultimately for our benefit. It may take a lifetime to understand that. It may take longer. I have learned enough to make my peace with it, whether I fully comprehend the answers or not.
Lastly, and a complete change of topic, I wish to address the physical aspect of treatment. Perhaps more for Travis to understand what you will likely go through and feel, so he may relate. But maybe it will help endure it as well. Chemo brain is real. It is like a thick fog of confusion presses in on your brain. You cannot swat it away like flies. It is like a clamp that squeezes in on your head. It doesn't hurt like a migraine. But it disallows you to think and focus clearly on life. It comes and goes and there is nothing you can do about it.
Also, you will have fatigue. This is different than being tire. Fatigue will make you feel heavy. When you go to the dentist and they put the lead ascot on you before taking X-rays, and you feel 30 lbs. heavier all over, that is what fatigue feels like. It is all over. I felt it most in my shoulders and arms. They felt like they dragged me down until I could not walk upright for their weight. When you sit down, you will often nod off like narcolepsy. Though sleeping will not take the tire away. You wake from a nap, intentional or not, feeling just as heavy and worn out. As long as you are not driving or cooking or something, don't fight it. Just roll with it. You will be out for a bit then wake up later and try to get on with life.
Nausea will hit as well. Though from what I hear, it is not as different that pregnancy nausea. You feel horrible and just want to throw up to feel better. Just like napping does not stop fatigue, puking will not stop the nausea. Sorry. I tried any number of things to help. Ginger candies as ginger is a natural stomach aid, crackers, prescription medication, soda water, whatever I could think of and all in combination with each other. Some things helped. My mother loves Diet Dr. Pepper but the though of it while in treatment makes her want to puke. Your tastes may change. Your doctors and nurses will keep an eye on your weight. You do not want to loose too much weight because it starts to compromise your body's ability to fight and recover. Make sure you find something you can keep down when you don't want to. Protein diet shakes like Ensure or Boost or even the Costco/Slimfast things are not bad for this. You get proteins and needed vitamins and minerals and you can do it quickly without having to chew anything. Again, find what works for you.
Having gone through it, and not really sure I believe the doctor's merciful words of remission, I understand what suffering is. I will tell you, when you start losing hair, I will shave my head again so you know you are not the only person to have to go through that. :)
If you guys have any questions or need anything including dinners, babysitting, a game night or even just need to hang out with people that have been through it, please do not hesitate to ask. We will be there.
This will be a difficult journey for you. Use your friends to help you as much as you can. "Get up. Yes you can."
Most sincerely,
-Ryan"
"The Crickets Have Arthritis"
Shane Koyczan
It doesn't matter why I was there, where the air is sterile and the sheets sting. It doesn't matter that I was hooked up to this thing that buzzed and beeped every time my heart leaped like a man who's faith tells him God's hands are big enough to catch an airplane, or a world. It doesn't matter that I was curled up like a fist protesting death, or that every breath was either hard labour or hard time, or that I'm either always too hot or too cold. Doesn't matter because my hospital roommate wears star wars pajamas, and he's 9 years old. His name is Louis, and I don't have to ask what he's got. The bald head with the skin and bones frame speaks volumes. The gameboy and the feather pillow booms like they're trying to make him feel at home because he's going to be here awhile.
I manage a smile the first time I see him and it feels like the biggest lie I have ever told, so I hold my breath cos I'm thinking any minute now he's going to call me on it. I hold my breath because I'm scared of a 57 pound boy hooked up to a machine because he's been watching me and maybe I've got him pegged all wrong, like maybe he's bionic or some shit. So I look away like just I made eye contact with a gang member who's got a rap sheet the length of a lecture on dumb mistakes politicians have made. I look away like he's going to give me my life back the moment I've got something to trade. I damn near pull out my pack and say, "Cigarette?"
But my fear subsides in the moment I realize Louis is all show and tell. He's got everything from a shotgun shell to a crow's foot and he can put them all in context. Like, "See, this is from a shooting range", and "See, this is from a weird girl". I watch his hands curl around a cuff-link and a tie-tack and realize that every nick-nack is a treasure and every treasure has a story, and every time I think I can't handle more he hits me with another story. He says, "See, this is from my father" "See, this is from my brother" "See, this is from that weird girl" "See, this is from my mother". Took me about two days to figure out that weird girl is his sister, it took him about two hours today after she left for him to figure out he missed her. And they visit every day, and stay well past visiting hours because for them that term doesn't apply. But when they do leave, Louis and I are left alone. And he says, "The worst part about being sick is that you get all the free ice cream you ask for." And he says, "The worst part about that is realizing there is nothing more they can do for you." He says, "Ice cream can't make everything okay."
And there is no easy way of asking, and I know what he's going to say but maybe he just needs to say it, so I ask him anyway. "Are you scared?" Louis doesn't even lower his voice when he says, "Fuck yeah." I listen to a 9 year old boy say the word fuck like he was a 30 year old man with a nose-bleed being lowered into a shark tank, he's got a right to it. And if it takes this kid a curse word to help him get through it, then I want to teach him to swear like the devil's sitting there taking notes with a pen and a pad. But before I can forget that Louis is 9 years old he says, "Please don't tell my dad."
He asks me if I believe in angels. And before I realize I don't have the heart to tell him, I tell him, "Not lately." and I just lay there waiting for him to hate me. But he doesn't know how to, so he never does. Louis loves like a man who lived in a time before God gave religion to men and left it to them to figure out what hate was. He never greets me with silence, only smiles and a patience I've never seen in someone who knows they're dying. And I'm trying so hard not to remind him I'll be out of here in a couple days, smoking cigarettes and taking my life for granted. And he'll still be planted in this bed like a flower that refuses to grow. I've been with him for 5 days and all I really know is that Louis loves to pull feathers out of his pillow, and watch them float to the ground. Almost as if he's the philosopher inside of the scientist ready to say, "It's gravity that's been getting us down."
The truth is: there's not enough miracles to go around, kid. And there's too many people petitioning God for the winning lotto ticket. And for every answered prayer, there's a cricket with arthritis. And the only reason we can't find answers is because the search party didn't invite us, and Louis, right now the crickets have arthritis. So there is no music, no symphony of nature swelling to crescendos, as if ripping halos into melodies that can keep a rhythm with the way our hearts beat. So we must meet silence with the same level of noise that the parents of dying 9 year old boys make when they take liberties in talking with heaven. We must shout until we shatter in our own vibrations, then let our lives echo and grow, echo and grow, grow distant. Grow distant enough to know that as far as our efforts go, we don't always get a reply.
But I swear to whatever God I can find in the time I have left, I'm going to remember you kid. I'm going to tell your story as often as every story you told me. And every time I tell it I'll say, "See, there's bravery in this world. There's 6.5 billion people curled up like fists protesting death, but every breath we breathe has to be given back. A 9 year old boy taught me that." So hold your breath, the same way you'd hold a pen when writing Thank You letters on your skin to every tree that gave you that breath to hold. And then let it go, as if you understand something about getting old and having to give back. Let it go like a laugh attack in the middle of really good sex, the black eye will be worth it. Because what is your night worth without a story to tell? And why wield a word like worth if you've got nothing to sell?
People drop pennies down a wishing well, so the cost of a desire is equal to that of a thought. But if you've got expectations, expect others have bought your exact same dream for the price of a 'hard work, hang in, hold on' mentality. Like, I accept any challenge so challenge me. Like, I brought a knife to this gun fight, but the other night I mugged a mountain so bring that shit, I've had practise. Louis and I cracked this world wide open and found that the prize inside is we never lied to ourselves. Never told ourselves that we'd be easy or undemanding. So we sing in our own vibration, and dare angels to eavesdrop and stop midflight to pluck feathers from their wings and write demands that God's hands take the time to catch you. So, even if God doesn't, it wasn't because we didn't try.
I don't often believe in angels, but on the day I left Louis pulled a feather from his pillow and said, "This is for you." I half expected him to say, "See, this is the first one I grew."
Tuesday evening, I found out a friend of mine died. It was rather unexpected. It was very upsetting.
It’s not like we were very close. I had really only known her for a short while. Lisa is a part of my Team In Training (TNT) friends and teammates. She died Tuesday morning, October 29, 2013, and it is assumed it was her cancer that killed her. We all knew she had cancer. That was how she and I became friends. We emailed support, motivation, and questions about running while going through chemo. I promise you, it is one of the most physically difficult things I have ever done. The fatigue is too often literally overwhelming, making you trail off the instant you sit down.
Some days, standing in the living room and feeling the weight of fatigue coming on, knowing there is nothing I can do to fight it, I just gave in. I would lie down right there on the floor and be out for an hour before I could pull myself back to reality. I could have walked upstairs to my bed. I could have walked over to the couch. I didn't care. That kind of exhaustion makes it really difficult to go run. Difficult to feel like you are alive instead of in a half reality, stuck between worlds. Between the living and the dead. Neither completely taking you, neither giving in to the other. Maybe the exhaustion is what finally got Lisa. I don’t know or need to know the actual cause of death. I don’t care. It was cancer.
In the last two weeks of her life, amidst her normal motherly obligations and life, Lisa continued to fight cancer. In her own battle she had visits to the doctor or hospital. In a more public facing effort, she continued with Team In Training. She had been raising money for the Leukemia and Lymphoma Society by preparing to run the San Francisco Nike Women [Half] Marathon with at least one of her daughters.
As she flew to California for the race weekend fun, she doubted herself. Not sure if she could perform well. I reminded her that a finish time was not important. The amount of time she spent in training, the efforts she made to raise money to fight cancer, that she can cross the finish line, these were the victories. She only had 13.1 miles to run or walk until someone gave her a medal to celebrate her accomplishments over such insurmountable obstacles. I told her of all the many people I knew there, some have become my favorite people, I was cheering her on more than any of them. I told her I was thinking about her. I cheered her on because I know what it is like to finish a race while going through chemo. And she did it. She is a hero. That is not diminished by her passing.
How many people can say with their last two weeks of mortality, emotionally wiped and struggling through incredulous physical pain, they ran a half marathon and raised money to fight cancer? To fight the very thing killing her? When I ran the Vancouver BC BMO Marathon earlier this year, in a room or 300+ people, there were four of us that stood when they asked for those currently fighting cancer to stand. Four that were enduring chemo and still going to run the next day. Lisa was that kind of person.
With her sudden passing, many of us were and are grief struck. She seemed to be doing well. She smiled her fantastic, enveloping smile and those around could not help but do the same. As TNT folks, the thing we know best in dealing with frustration and confusion towards cancer is running together. It is, after all, how we all came together to begin with. We gather unshowered in the early morning, share an emotional message, I try to make people laugh because I think that's the best way, we get in real close to each other, put one hand in for a team cheer of "goooOOO TEAM!!" and we run.
Tuesday night, after the kids were down and I was lost in emotion, I put on my purple TEAM shirts. I kept choking back tears as I put on my shoes. I kissed my wife. And I ran. It's the only thing I think we know to do. It's the only tribute that means anything to us.
The purple shirts are our race shirts. On which we write or screen or pin the names of those for whom we run. Some in honor of, some in memory of. They are the uniform of our efforts, motivation, drive, and loved ones.
Lisa, before you ran the Nike Women's, I shared with you a most appropriate quote. “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” (Christopher Reeves). I echo that again with the sorrow of your passing. Maybe unintentionally, you have held your light high for all to see and follow. You have endured so much, with pain, with agony, and to those of us that knew your struggles, you did so with such admirable strength. You are and always will be a hero.
Tuesday night, I put on my purple shirt. I cried while running. I ran for Lisa.
Well I certainly HOPE so. Brooks has a number of charity organizations with who they have worked in the past, donating either a percentage of sales or products and things. I have reached out to them in an effort to strike up a similar partnership for the Leukemia and Lymphoma Society.
The real nitty gritty of the proposal is that they make a limited edition purple shoe of one of their lines of shoes, and donate a portion of the sales to Team In Training. What would be the coolest ever is if they did one whole month of purple products, shoes, shirts, hats and jacket, and donate from that month's sales. That way customers could buy whatever model shoe they run in (the Ghost for me), or a jacket or something if they prefer a different shoe for running. Everyone can show their TEAM spirit that way.
Well the idea has been officially proposed and I should hear back by mid January. I will post an update about it then.
...Fingers crossed!
I didn't say anything about this after my last dose of chemo. I didn't say anything because I didn't want to get my hopes up by saying it out loud, or even typing it. Where I thought I had one more dose of chemo before I could hope to be done, I was informed that this last one was in fact, my LAST one. ...no way.
Pending test results of the CT which I had this morning, and the result came back the same as the last one, "Shows no signs of lymphoma," I am done. I am done.
I can't say it enough for it to sink in. I am done.
It's been three and a half years of chemo. It has become the way life is. I have no choice but to take another hit and let the fog roll in. Am I really done? In six months are they going to say they made a mistake? Am I going to get my port taken out of my chest only to need it put back in?
AM I REALLY DONE???
...oh please let it be so. Please just let me be done.
The doctor said I am done. We can take the port out.
I am done.
If you know this picture, you know exactly how I feel. I make no apologies for the language. I feel like I "crawled through a river of shit and came out clean on the other side."
A week ago tomorrow, I sat down for what I thought would be the second to last dose of chemo ...ever! Well, not forever. I know that there is no complete cure for Lymphoma yet so at best I could hope for a maintenance drug like Gleevec to come out before the eventual return of my cancer. But Dr. Oncologist told me this was my last dose!! HOW COOL IS THAT?!?! I thought I had one more dose coming in November. The blood work showed all signs were "normal," which is as normal as my blood gets for now. I am still a bit anemic and have low white blood counts though not low enough to worry about neutropenia or anything. Instead of coming back in for another dose of poison in two months, I will go in for a blood test is all. Yes, there will be a complete CT scan between now and then to measure and analyze everything. Pending those results and if everything is still good, I am done!
To be brutally honest, that scares the bejeebers out of me. It means another wait-and-see period. This one is supposed to be final and last for at least a few years. But so far, all wait-and-see periods have ended with going into heavier rounds of chemo, more nausea, hair loss, unbelievable fatigue, and all the emotional distress. While I have been on this maintenance dose of chemo for the last who knows how many months (10? 11?), I was not quite as worried because I knew I was at least getting something to keep cancer at bay. Now...? I am left to the strengths of my own immune system to fight it's epic saga.
I don't know. Which is to say, I do not know what to do, say or think, so I shrug my shoulders and sluff off the burden of unquieted anxieties. ...I don't know.
I ran last night. It was the first time since that dose a week ago. It usually takes a week to a week and a half to start feeling the fatigue subside. I wanted to start the week off strong. Running or doing Insanity on Monday but knew I was not yet up to it. If I held still, I felt well enough. If I moved around, like walking to the bathroom at work, I felt all sorts of weird. My head was dizzy, my legs unsure. Walking home from the train after work I did not trust my legs for a run unless it was at home on the treadmill because if needed, I could stop and just walk inside. If I were out running, I would have had to cover the distance to get back home. I have done that once before and do not want to repeat it. I decided to wait at least another day. Yesterday, the mental anguish was too much. I needed to run to clear my head more than anything but knew my legs would benefit as well. I ran six miles and felt really good. My head was not too dizzy. My legs kept me going. My lungs burned enough but not too much. I was not trying for any speed records, just go.
That is the beauty of running for me. I can do hard workouts, speed workouts like Yazzos or Fartleks, hills, whatever, pushing myself to make me stronger and faster. But I find the best workouts are when I let go of time and pace as much as I can and just go run. I think of the mileage I want to hit and a route that roughly gets the distance. Then I go. By the time I am back, all the intellectual backwash is cleared. Concerns are lessened, patience restored and I feel better. That is what I needed last night. I intended to run five miles last night to be a little easier on my body for the first post chemo run. I usually try to take it a little easier after a dose. I didn't realize I turned for the extra mile until I was halfway through that extra loop. Too late to turn back and have it make any difference, my legs held up and my mind was grateful for the extra mile.
Now we wait. We wait for the scheduling at Imaging to call and set up the CT. Maybe next week I will get results. Maybe another week. It depends on when I can get in for the scan. ...Wait and see. My least favorite time.
That sucks.
I don't know. I'll go run again tomorrow, building up more miles again.
Today is one of those days that hurts to get out of bed in the morning. I set my alarm for early enough to go run before work. That did not happen. I almost cried getting out of bed in time to make it to work.
Truth be told, I have been so tired for a while now. It is not just tired like I need a nap during the day, but it is the kind of tired that comes with chemo and fatigue. Chemo tired is not pacified by taking a nap. You wake just as tired as before. It is heavy. My arms feel like they are pulling me down.
Yesterday after making dinner for my family, a cheese and chicken ravioli (store bought) in a pesto olive oil sauce I made with garlic bread and sweet potatoes with caramelized onion and crumbled bacon, I just had to sit down. I did not know I was asleep until all of a sudden I realized my wife was finishing up reading to our children and I had no idea how long they had read. Sure, I mention the food because I think the meal itself had a little to do with it as a card/starch filled meal could have had a little help towards a food coma, but the heavy tired has been going on for a while. ...And because I wanted to brag a little about how the food was good. That is was fatigue does. It makes staying awake, especially if you sit down, a near impossibility.
In addition to the heavy tired that has plagued me for too long, I ache. Both in the bones and joints, as well as in the muscles. The aches and pains that commonly come with running and keeping up with replacing your shoes when mileage dictates the need, those aches I accept. Those aches I earn. Ankles and shins and hips, they voice their dislike for my pushing myself. Aside from those which are the acceptable payment for the emotional sanctity of physical exertion, when your bones hurt, when your muscles feel bruised, the hypochondriac in me raises his ugly mottled head.
Am I relapsing? Is it spreading? Is it mutating? Why does my bicep hurt like I curled too much weight? Why do my radius and ulna ache?
...Grumble, grumble. My next appointment is in a couple weeks. I don't know if I am just being paranoid or if these are legitimate issues.
I have been thinking about that appointment for a few days. The nurses always ask if I am in any pain. Usually I have earned any pain by running or something. But not this time. I do not understand it. I do not know how to answer their next question, either. "On a scale of 1-10, how bad is it?" Well that's just stupid. Pain is relative. Is this pain more painful than... a root canal with not enough novocain? No. Is this pain more painful than stubbing your toe? Yes. Is this pain painful enough to take pain blockers? Everyday, and it still hurts. Then I ask myself if this pain is worse for me than the cause of the anguished look on the old lady's face in the chair next to me in the infusion room. With a sigh comes my answer, I would be the biggest sissy if that were the case. I ache. I am very tired of the ache. But I should be able to endure this pain far more than those around me. So what do I tell the nurses? I would really like the pain to go away, but if there is not much more advice than can be given than take some Tylenol, then "Thank you, Sir. May I have another?" And I will be on my way.
"Tell me where is Fancy bred,
Or in the heart or in the head?"
The Merchant of Venice, Act III, Scene 2
I don't know.
...Who is John Gault?
