A Letter to a Friend

"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"

I am the gatekeeper to my own destiny

I have a friend. Surprising? I know. But this friend has MS. And while it is not cancer, we have dealt with many of the same issues including infusion room treatments, fatigue, aches and pains. Earlier she posted that it took her a number of years to attend a conference about MS, "because I couldn't look others in the eye who also have MS."

To borrow some words from Hank, it hit me like a 50's Packard driving through my chest. I have felt that. I think I have said on here before that I felt like my cancer was a social disease. Like others might treat me like I must have done something to deserve it. I was ashamed of my cancer and did not want to talk to others about it.

From Fight Club, the book, I found a new level of meaning in this quote from Tyler/Jack, "My fear is that people will see my [cancer] and I'll start to die in their minds. The cancer I don't have is everywhere now." Of course, I too feared that I would be a symbol of death and decay in people's eyes. But then beyond that, I realized that paralyzing fear was as bad as my cancer. It chancred me, spread rampant throughout and threatened to consume me. It was my non-existant cancer. The one I created and set loose within to destroy me.

I do not know how to help people understand that other than by example. Hopefully, in seeing that someone else has "self infected," as it were, they can see it and be liberated from the same folly. I hope so. I hope I can help others understand that they don't have to live in the mental state of anguish just because of some stupid physical malady. We can learn a lot from the wisdom of other brilliant men.

“Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” (Groucho Marx)

Maybe we eat it tomorrow. But maybe not. Most likely not. So today, "I am the gatekeeper to my own destiny and I will have my glory day in the hot sun." (Nacho Libre)

...Wow. That's a weird bunch of people to string together. My friend "M", Henry Rollins, Chuck Palahniuk, Groucho Marx, and Nacho. I should go to bed before this gets worse. I will have to re-read this tomorrow and probably make drastic edits. And so, thus ends the late night ramblings of one who should be drawing instead of stringing improbable people together.

Good night, and good luck. (...dang it!)

Blood Tests

One week ago today, so Thursday December 20th, 2012, I had another port flush scheduled. While doing that, my nurse took a blood sample to test. Good. I was really hoping she would. I have been really tired lately and had raised my proverbial eyebrow.

A little backstory on why I worry about blood levels. You would think it normal for a cancer patient either in treatment or recovery or even remission to worry about their blood counts, but this goes a little beyond "normal." My last heavy round of chemo ended mid March, which made for almost exactly two years since I started this mess. I was happy to hear the test results then, "shows no sign of the disease." I had been training for my second half marathon in June and was looking forward to having a couple months to get the chemo and fatigue more out of my system. I did not push myself that race. I took it really slow, just relaxed, and enjoyed myself, not wanting to try and push hard because of the recent round of treatment.

Two and a half months after that race, I ran the Hood to Coast relay for the first time. In training for it, I had been following a generic schedule set up by an OHSU group. OHSU is one of the biggest medical universities and hospitals on the West Coast. On my last long run before I switched entirely to shorter runs multiple times during the day (which is like the relay), the schedule said something like 11 or 12 miles. If I am going to run that, I might as well run the 13.1 to make a half. Right? Very wrong. It was, unequivocally, the worst run I have ever had. By mile 11-ish, I thought I was going to black out. Not like, "Oh man this is hard! Why am I doing this?" but I was actually blacking out. My sight was blurring and spotty. If I tipped over like to rest my hands on my knees, I would have fallen over completely. Black out. I was not sure I could make it home. I stopped running. I walked the last couple miles home and was just happy to make it.

The next few days were very telling. I could not recover. I felt like I was in the midst of heavy fatigue again, and sever chemo brain. It was worrying me. I finally called my oncologist who had me come in the same day for a blood test. Surprisingly, the white blood cells were fine (for me) but I was two liters low on red blood. They just about ran me over to the hospital right then. Instead, they scheduled an infusion for the next day. We started running all kinds of tests to try to determine the cause of the red cell depletion. There are a few common causes, but none of them seemed to be the catalyst for me. Actually that's a good thing. Some of the common things were like the cancer spread to the bone marrow, or the blood produced by the marrow had mutated and the body was rejecting it. While getting a bone marrow sample done is less than pleasant, it is a necessity.

With the blood doping, I was given permission to still run H2C the next week. Mandy was not thrilled. But I did really well. Blood doping totally works. :)

It's been four months or so since then. Every time I have been tested, my blood has been holding, which is great. Seems it was a weird fluke, for the most part. But anytime I cannot shake being really tired, I get worried now. Recently, I cut out energy drinks. No more Rockstar, no more Amp. Let's be realistic though, there is still a lot of Diet Coke. One step at a time. But the last while I have been super tired and I have blamed it on the lack of Rockstar. But the results of the blood test show both red and white cells (and related things like neutrophils, etc.) were down again. They were lower than one month ago though higher than the two months prior. So the results were not bad enough to warrant additional tests, but still pay attention and do another CBC next month.

My worry comes in here. I have three more weeks before I go in, and on Christmas day I took a two and a half ish hour nap and still went to bed by 9:00pm. I slept for nine hours and was unhappy the alarm was going off. I could have slept more. Last night, Dec 26th, doing one of the shorter Insanity workouts I noticed I was pretty spacey. I am not liking the direction this may be heading. My running is stronger now than it has ever been. Not trying to push time, I did 10 miles and averaged 10 min 19 sec per mile. That is so much faster than I have been able to run that I am very excited to start working on speed. But the Spidey Sense is tingling about the tired. With three weeks before the next blood test, and maintenance dose of chemo, I guess I just keep an eye on it. Keep running. Keep doing Insanity.

...Wait and see.

And in the words of a Spaniard, "I hate waiting."

Blood Doping and Ogden Nash

This was an email to my siblings, August 10th, 2012:

i figure Mom/Dad have let you know the basics from your "eat steak" comment [Stephanie].

the run down is this. i am either not producing blood like a normal person or i am hemorrhaging like a vampire's dream. 3 weeks ago i had my last maintenance dose and blood levels all looked really good [for me anyway]. but i have been so tired and feeling fatigued, which is different than tired, and really dizzy weird. so i called oncology and they had me come in for blood tests. in the last 3 weeks, i have averaged losing a pint a week. not good.

a blood cells life span is 2 or 3 months. your body produces as much as dies off to keep your blood levels fairly even. so like i said, either i stopped producing, or i am bleeding out like crazy. now since i have not had any blood spills like a crude oil company, the blood could be deteriorating at a rate much faster than the production can keep up with. [bad grammar, i know] but that is less likely.

so the immediate fix is get a transfusion to top me off, then check what might be the cause of the problem. yesterday i went into the hospital to have them do a blood draw so they can match it with a donor. since the transfusion part takes 5+ hours and the matching process 2-3 hours, they like to split them up to different days. my part was pretty quick. give them a sample, answer a few questions then be on my merry way while they get to work.

i could do the transfusion today, but the hospital was already pushing maximum capacity for today and i need to work, so i go in tomorrow to get blood. i will practically be a Tour de France rider after my blood doping experiment. [:)] i told them to give me something with super powers. i don't think it's going to work though. i should feel a lot better after the transfusion. energy levels up, oxygenation and everything good... i will try a mellow stationary bike ride tomorrow evening to see how i am doing.

then Monday, "...So good to me, Monday morning, It was all I hoped it would be," i start tests again. i will have a CT followed by a bone marrow sample. that is no bueno. i have only had one done before, when i was first diagnosed. it messes you up for the rest of the day and i still have a bb sized lump in my butt from it. results will follow in the few days after those tests. the worry is that lymphoma has spread to the marrow and is causing the lack of production. which would mean harder heavier treatment than i have previously had. ...merde! to borrow a good frenchy word.

oh well. we don't know what is up and the rest is speculation. and Ogden Nash says "God in his wisdom made the fly, And then forgot to tell us why."

-R