Non-Hodgkin's Lymphoma is a crappy thing, even crappier when it happens to you. I'd been writing for months about running, why it's cool and the people that make it great here in southern Arizona. That is until my life took a hard left turn with a diagnosis of Non-Hodgkin's Lymphoma in 2009. So if you'll allow me over the next few weeks, I hope you’ll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can read from the beginning here: Part One,
December 2009
These next few treatments are the middle ‘laps’ of my race against chemo. This is where I was best back in the day, putting the hammer down, throwing in a few tough laps, making it hard for my competitors to hang on. Get ready Mr. Chemo, it’s time for a few tough laps. I may not be running anymore, but…
But it’s hard to get motivated and I’m really down about it. It’s easy enough to be energetic and get up for one round of this crap, perhaps two, but the effects are cumulative and I’m tired. I feel sick, look sick and am really dreading the upcoming holidays. It will be hard to be festive about anything at this point.
Cancer patients talk about the phenomenon of ‘pre-nausea’ prior to treatment. I know what treatment will do to me the next day and my body gets sick thinking about it. I’m poked and prodded as usual, but Dr. Persky says he cannot feel the ‘tumor’ at all. He can’t verify if it’s deeper inside, but it is definitely shrinking. I am both elated and bummed, dreading the thought of 3 more months of treatment.
At the AZ Cancer Center I have a different nurse each time I go to treatment. I’ve learned from others receiving treatments elsewhere that this is somewhat odd. But it doesn’t bother me because I like to meet them and get their perspective on the process. I’ve mentioned my pride in my ‘great’ veins, but they are starting to get pissed at me, hiding out, making it harder for the nurses to find them. I’m becoming a pro at this procedure, this process of chemotherapy. The beeping of the machines, the other patients in my room, covered in blankets reading or sleeping seem normal to me. Other than a missed vein on the initial try, it’s a relatively uneventful day, but I’m not nearly as enthusiastic as the past two. I focus on my computer watching TV shows and movies from iTunes…not talking anyone.
Mid – December 2009
I am now completely bald – over my entire body. Losing the hair on your head isn’t as bad as I anticipated; a hat covers that up no problem. It’s the loss of your eyebrows and eyelashes that is the most disconcerting because they define your face. Because of this, I find myself going to fewer and fewer places, not making eye contact or being the outgoing person that I’m known for. I feel really sick from the chemo, physically and emotionally a wreck. I basically check out, not seeing anybody unless it’s necessary.
I’m three days past the half-way point of my treatment and I think I might just be able to do this. I’m ‘racing’ chemo and think that I have the edge. I pulled ahead in lap two, with a fairly easy treatment and have the lead and the crowd is cheering. But chemo is competitive too, and throws in a tough lap of its own. I wake up one morning with slight cramping in my abdomen, but am not worried – it’s the cancer getting its butt kicked, right? Well I think the cancer was pissed because these are some of the worst stomach cramps of my life. Every 90 seconds or so, pain so excruciating that I think it would be better to be knocked unconscious, followed by 90 seconds of relief. It’s just enough time to think they’ve subsided, until I’m cruelly reminded again that they haven’t. The cramps last for 24 hours. I manage to sleep about 6 hours that day – in 20 minute increments. I’m exhausted.
I’m getting more emails from friends as the news of my Lymphoma makes its way around. I feel bad that I didn’t tell everyone, but I didn’t want to be the ‘cancer guy’, didn’t want to talk about it. The emails are from random people I know and have been both encouraging and supportive. My personal favorite is from Craig Dabler a local jeweler and a good friend from The Workout Group.
Tim-
I thought you may get kind of a kick out of hearing this. While running with (XXXX) last night, she made this statement, "Tim's wife is very lucky because Tim is both a nerd and real hot, which is an amazing combination!"
Just keep that to yourself.
Craig
I laugh out loud and feel great the rest of the day. I am a nerd, although ‘hot’ is a subjective term…
Christmas 2009
Christmas is fast approaching and I’m dreading the season already. We have a family trip planned to Kansas and I loathe being the center of attention, getting the entire family’s sympathy for a week. While they know what’s going on, I haven’t really talked to them. I email my family asking them to respect my decision to not talk so much about Lymphoma and rather enjoy a great holiday. “Let’s focus on the new babies and joy” I tell them.
My treatment schedule follows a precise schedule, every 21 days I’m in the chair, hooked to the machine. I’m nervous because my 4th treatment is two days after I return from Atwood, a small town in northwest Kansas. I’m even more nervous because the forecast calls for snow, followed by more snow. My fears are realized as the storm proceeds to shut down large portions of the interstate, preventing me from catching my Saturday flight. On top of everything else, several family members are starting to get sick – a horrible fear of mine, as I have been ultra careful not to get sick. If I show any sign of illness, I’m not allowed into chemo. I wind up spending the majority of the time by myself in a small room at the It’ll Do Motel. Fortunately the storm clears Sunday morning and I’m able to make it home for treatment. Oh joy.
December 28, 2009
Because of skewed travel arrangements, our friend Artie gives me a ride to the Cancer Center. Artie is a good friend, a former professional dancer and instructor. He gave us dance lessons prior to our wedding 10 years ago, as we wanted to do more than ‘circle dance’. Artie is a great instructor and actually gets me through a dance in front of 250 wedding guests. I’ve accomplished a lot in my life, but this dance ranks right up there. Top 3 probably. It was more nerve racking than any major race I’ve ever run. The funny thing is in order to learn the steps; I occasionally have to ‘dance’ with Artie. To this day, I tell anyone who will listen that Artie is the smoothest partner I’ve ever danced with…
I’m encouraged that the doctors can no longer feel the lymph node in my abdomen. It is continuing to shrink, although my white blood cells are having a tough time rebounding from treatment. If they are too low, the doctors may postpone chemotherapy. I’m on the bubble today, but green-lighted for the chair.
Treatment 4 is fairly routine, however they want to administer the Rituxin at the beginning, a change from prior treatments. I question this and they check my protocol. “Why yes, Rituxin should always be delivered at the beginning”. Crap! I’m told this is not a problem, but I look at both nurses and say “well that’s fine, but I’m not coming back to redo the 1st three treatments…” I wink at one of the nurses, while the other nurse squirms. They realize I’m teasing and we continue on our way.
Chemotherapy side effects are cumulative, and I continue to be more and more run-down. It’s harder to rally, both physically and mentally. I find myself answering the question “How are you?” with a mild “I’m OK”, a big departure from normal upbeat self.
January 18
The last three weeks have been spent in a fog, ‘feeling thick’ with lots of sleeping. I have a rough Sunday night, probably nervous for my 5th treatment the next day. Although my vitals are good, Dr. Persky is concerned with my white blood cells. As he assigns me to a chair, he pauses to take one more look. He says something is not quite right, and he “can’t make the total add-up, so no chemo for you today”. Crap! All this anxiety, the pre-nausea and stress for nothing. I have to come back in two days.
But even that treatment is in doubt.
The next entry is here.
Saturday, April 24, 2010
Tuesday, April 20, 2010
Running For My Life - Racing Chemo
When asked to write this running blog, I thought it would be fun to share the love of running, the camaraderie and the joy it brings to people. I’ve met some cool people, attended some great events and hopefully conveyed that to my readers via my writing. But when my life took a hard left turn with a diagnosis of Non-Hodgkin’s Lymphoma in April 2009, I started a journal of my own experiences, chronicling the good, the bad and....the ugly. So, over the next few weeks, I hope you’ll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can read from the beginning here: Part One,
Mid-November 2009
I’m in a common room today with three other people. It has all the benefits of the private room (wi-fi, snacks, etc.), but no TV. But I’m smart and bring my computer with some movies and TV shows. My mom came with me today and sits through the doctor ‘pre-approval’ process to ask a few questions. I always try to bring someone with me during this time, to help track on my questions and be sure we get all the information. Dr. Persky tells me my blood levels are on the rise and the platelets look good. I’m still run-down, but this is encouraging. He measures my tumor by feel, pressing on my abdomen and estimates it at 8 cm – it was originally 11 cm, so this is great news. Woo hoo!
I feel 100 times better today than I did last time, although they did start me off slowly on Rituxin because of the reaction I had last time. But by the end I was on full-speed ahead and would be green-lighted for round three. From the time I’m in the treatment pod, I have a needle in my vein and am connected to a drug-dripping machine. Thankfully they are mobile and I move around a bit to chat with the other patients. I challenge a few of them to a race around the pod, ‘for money’. It gets a laugh and I smile.
It does help to think of my chemo treatment as a ‘race’. In high school and college I ran a variety of distances (800, 1500, 3000, 5000, etc). Each race had a different strategy; in fact each lap of a race had a strategy. ‘Get out fast in lap 1’, ‘extend your separation in lap 3’, ‘save some juice for the last lap’, etc. Thinking about this, I realize my chemotherapy is a six-lap 'race'. I just completed lap two, positioning myself to make a move. This gets my competitive fire up and I decide I’m going to kick chemo’s ass.
The week of treatment follows the similar pattern to last time, but I’m ready for it this time with some medicine and foods I like. I find that I’m craving foods that I haven’t in some time – tomatoes (which I eat like apples), grilled vegetables, etc. But unfortunately there are whole other groups that if I even think about, I get nauseous. So long turkey sandwiches, good bye bananas, I’ll miss you. But this craving isn’t always good as I’ve found a renewed interest in Jack in the Box sausage croissants. They are little nuggets of manna from heaven.
I continue to ‘feel thick’ during the weeks after chemo, but I’m managing the physical effects fairly well by listening to my body and taking some prescribed medications. However my emotions are out of whack. I’m a lot more liable to swing from one end of the spectrum to another. Songs, movies, commercials and pictures can make me tear up in a second, I am a crying machine. Man, I cry a lot.
Thanksgiving Weekend 2009
I went to The Workout Group for the first time in a few months to coordinate the teams for the Thanksgiving Cross Country Classic. Our group always enters several different teams to compete for the team title and coveted bragging rights. My team, The Slow Old Goats will not have a shot at the title, but we are savvy smack talkers and will come away with stories of how great we could have been.
I’m having a hard time talking to the group as my voice is very hoarse from all the drugs and Prednisone. With my drawn face and obvious hair loss (despite a hat), it’s clear something is wrong, but not everyone knows. One of the WOG members sends me a Facebook email later that evening:
Tim-
I hope it’s okay that I ask this...
Are you okay?
XXXXXXX
Crap. I know they are trying to be a friend, but this reinforces the fact that, not only am I sick, I LOOK sick. I get on the web and look at side-effects for chemo, especially the physical changes. It just leads me down the road of statistics and survival rates, not very encouraging. I vow not to look at these sites again…
Thanksgiving Day 2009
It’s been 10 days since my last treatment, typically the ‘nadir’, or low-point of my blood levels. So it’s no surprise that I run horribly slow at the Thanksgiving Day Race. Breathing is difficult and legs still heavy. Some of my friends offer to run with me, but they basically would be walking. I find myself running the course with an 8th grader at Orange Grove Middle School. He asks how long I’ve been training for this race. “28 years, how about you?” I say. “Two-weeks”, he replies. We run together and he wants to walk but I tell him there is no walking during a race, encouraging him to continue on, which we do slowly. Towards the finish he is dog-tired and wants to walk. But I tell him no, we have to finish strong, and “look good for the ladies” while running across the finish line. He sprints ahead of me, beating me by a few seconds. I email his coach later that day, a friend of mine from high school, telling him to get the kid out for track. I find out later that my 8th grade friend is now well on his way to a rewarding running career.
November 28, 2009
Facebook has provided me with an avenue to reconnect not only with friends, but old teammates and competitors from high school and college. So when I’m invited to an ‘old-timers’ reunion in Tucson, I’m all in. I try gamely to run the 2-mile course but couldn’t finish as my legs were super heavy. Andy Chase, an old friend and competitor from Sahuaro H.S., makes my day though. He has edited an old video tape copy of the 1984 State Cross Country Championship with awesome footage of us and our old friends and teammates. We marvel at our skinny selves and lament how long it’s been since we were fast. 1992 United States Olympian in the steeplechase, Danny Lopez, makes an appearance in the video and we laugh because we used to beat him a long, long time ago. Overall, it was just a great day.
But what I didn’t know, this was the last day I would run during my treatment.
The next entry is here.
Mid-November 2009
I’m in a common room today with three other people. It has all the benefits of the private room (wi-fi, snacks, etc.), but no TV. But I’m smart and bring my computer with some movies and TV shows. My mom came with me today and sits through the doctor ‘pre-approval’ process to ask a few questions. I always try to bring someone with me during this time, to help track on my questions and be sure we get all the information. Dr. Persky tells me my blood levels are on the rise and the platelets look good. I’m still run-down, but this is encouraging. He measures my tumor by feel, pressing on my abdomen and estimates it at 8 cm – it was originally 11 cm, so this is great news. Woo hoo!
I feel 100 times better today than I did last time, although they did start me off slowly on Rituxin because of the reaction I had last time. But by the end I was on full-speed ahead and would be green-lighted for round three. From the time I’m in the treatment pod, I have a needle in my vein and am connected to a drug-dripping machine. Thankfully they are mobile and I move around a bit to chat with the other patients. I challenge a few of them to a race around the pod, ‘for money’. It gets a laugh and I smile.
It does help to think of my chemo treatment as a ‘race’. In high school and college I ran a variety of distances (800, 1500, 3000, 5000, etc). Each race had a different strategy; in fact each lap of a race had a strategy. ‘Get out fast in lap 1’, ‘extend your separation in lap 3’, ‘save some juice for the last lap’, etc. Thinking about this, I realize my chemotherapy is a six-lap 'race'. I just completed lap two, positioning myself to make a move. This gets my competitive fire up and I decide I’m going to kick chemo’s ass.
The week of treatment follows the similar pattern to last time, but I’m ready for it this time with some medicine and foods I like. I find that I’m craving foods that I haven’t in some time – tomatoes (which I eat like apples), grilled vegetables, etc. But unfortunately there are whole other groups that if I even think about, I get nauseous. So long turkey sandwiches, good bye bananas, I’ll miss you. But this craving isn’t always good as I’ve found a renewed interest in Jack in the Box sausage croissants. They are little nuggets of manna from heaven.
I continue to ‘feel thick’ during the weeks after chemo, but I’m managing the physical effects fairly well by listening to my body and taking some prescribed medications. However my emotions are out of whack. I’m a lot more liable to swing from one end of the spectrum to another. Songs, movies, commercials and pictures can make me tear up in a second, I am a crying machine. Man, I cry a lot.
Thanksgiving Weekend 2009
I went to The Workout Group for the first time in a few months to coordinate the teams for the Thanksgiving Cross Country Classic. Our group always enters several different teams to compete for the team title and coveted bragging rights. My team, The Slow Old Goats will not have a shot at the title, but we are savvy smack talkers and will come away with stories of how great we could have been.I’m having a hard time talking to the group as my voice is very hoarse from all the drugs and Prednisone. With my drawn face and obvious hair loss (despite a hat), it’s clear something is wrong, but not everyone knows. One of the WOG members sends me a Facebook email later that evening:
Tim-
I hope it’s okay that I ask this...
Are you okay?
XXXXXXX
Crap. I know they are trying to be a friend, but this reinforces the fact that, not only am I sick, I LOOK sick. I get on the web and look at side-effects for chemo, especially the physical changes. It just leads me down the road of statistics and survival rates, not very encouraging. I vow not to look at these sites again…
Thanksgiving Day 2009
It’s been 10 days since my last treatment, typically the ‘nadir’, or low-point of my blood levels. So it’s no surprise that I run horribly slow at the Thanksgiving Day Race. Breathing is difficult and legs still heavy. Some of my friends offer to run with me, but they basically would be walking. I find myself running the course with an 8th grader at Orange Grove Middle School. He asks how long I’ve been training for this race. “28 years, how about you?” I say. “Two-weeks”, he replies. We run together and he wants to walk but I tell him there is no walking during a race, encouraging him to continue on, which we do slowly. Towards the finish he is dog-tired and wants to walk. But I tell him no, we have to finish strong, and “look good for the ladies” while running across the finish line. He sprints ahead of me, beating me by a few seconds. I email his coach later that day, a friend of mine from high school, telling him to get the kid out for track. I find out later that my 8th grade friend is now well on his way to a rewarding running career.
November 28, 2009
Facebook has provided me with an avenue to reconnect not only with friends, but old teammates and competitors from high school and college. So when I’m invited to an ‘old-timers’ reunion in Tucson, I’m all in. I try gamely to run the 2-mile course but couldn’t finish as my legs were super heavy. Andy Chase, an old friend and competitor from Sahuaro H.S., makes my day though. He has edited an old video tape copy of the 1984 State Cross Country Championship with awesome footage of us and our old friends and teammates. We marvel at our skinny selves and lament how long it’s been since we were fast. 1992 United States Olympian in the steeplechase, Danny Lopez, makes an appearance in the video and we laugh because we used to beat him a long, long time ago. Overall, it was just a great day.
But what I didn’t know, this was the last day I would run during my treatment.
The next entry is here.
Saturday, April 17, 2010
Running For My Life - Is Bald Beautiful?
I started this running blog in the spring of 2009. I thought it would be fun to write – not so much about training – but the love of running, the camaraderie, the joy it brings to people. I started off tentatively, but hope I have developed a voice that conveys to people the FEELING running invokes. I’ve met some cool people, attended some great events and hopefully conveyed that to my readers. When my life took a hard left turn with a diagnosis of Non-Hodgkin’s Lymphoma in April 2009, I started a journal of my experiences, chronicling the good, the bad.....and the ugly. So, over the next few weeks, I hope you’ll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can from the beginning here: Part One
Late October 2009
I feel great the week of treatment once I get by Tuesday’s chemo ‘hangover’. It’s probably the Prednisone. I even play golf the Friday after treatment with a group of friends and have a great time. But then Saturday hits me square in the gut. I wake up in the morning with horrible stomach problems. My guts feel like I ate a bowl of melted cheese, with a side of melted cheese and a little man is inside me churning his way through the melted cheese. I can’t think of another way to describe it – a stomach full of melted cheese. I have cramps, feel disjointed and distended and cannot get out of bed. I can barely move all day.
The next day and I’m a still a wreck and dog-tired all day. I’ve been warned about the side effects of coming off Prednisone. I’m taking huge doses during the first 5-days of treatment, but then get cut-off until the next cycle in three weeks. I’m jittery all day with my emotions swinging from anger, to sadness and overwhelming frustration. The broccoli I’m chopping for dinner doesn’t stand a chance. I have to go outside and take a breather. If I didn’t feel so crappy, I would go for a run to chill-out. It doesn’t matter, I need to do something about this; this cannot be healthy.
I will continue to feel like junk through the chemo downtime. While I can function and get through my daily routine, I have a constant, underlying feeling of fogginess, aches and a general malaise. It is a feeling I will come to call throughout this entire process, as ‘feeling thick’.
November 2009
They’ve warned me to expect the side-effects I’m having, along with hair loss in the first 10 days. But here it is 10 days post-treatment and, while I do feel like crap, still no hair loss. Win! However, just a few days later I wake up with my scalp burning, like that feeling you have when you bump you head on an open cabinet door. As I try to recall the incident, I panic and realize this is the first sign of my hair falling out. There is no visible loss and Christina doesn’t see anything, but it still disconcerts me. I usually wear my hair short, and a little spiky, and my fears are soon realized as I put product in my hair and tufts of it stick to my fingers. I’m looking like a bad radiation special-effect from a B-movie.
I decide to get my hair cut SHORT this week; ‘high and tight’ we used to say to our ROTC friends in college. I figure that once my hair falls out in 2 – 3 weeks, most people will be used to me with little or no hair. I use the free coupon to Sports Clips that we handed out at the Pumpkin Race to all runners, but chicken-out on getting it shaved. The girl cutting my hair flirts with me, telling me how ‘cool’ it looks and that it makes me look ‘young and hip’. Right. I know she is lying because it doesn’t fit my big, giant and now almost bald head. She’s looking for a tip, and I’m not mad, just laughing about it. I tip her the amount of the haircut - $13.
I’m starting to get odd emails from people I don’t really know wishing me well, and runners have started talking about it in the community. I started this treatment process in April, wanting to keep it close to the vest and not tell the world. Handle it on my own. The reactions from the few I’ve told range from shock, concern, jokes, personal stories and even separation. Everybody deals with it in a different way, but I guess I should have realized that not everyone will keep it as close to the vest as I would want. Exactly the opposite of what I wanted to do, control the message. Maybe it’s because I don’t want them to feel sorry for me? Think less of me?
I’m having constant dreams about hair loss – but on my calves. In my dream, I’ve lost hair on my calf in odd, geometric designs. I know this is an allegory of my fears of losing my hair in patches. My hair continues to fall out and I continue to ignore it, choosing to see the remaining hair ON my head, (not on the floor or in the shower), like a true bald dude. But when I run my hand through my hair, it looks like I'm petting a shedding dog, large chunks of hair floating through the air to settle on the floor.
November 15 – Is Bald Beautiful?
It’s November 15 and my hair is really starting to fall out in clumps. I make the mistake of blow-drying my hair this morning (well what’s left), and I feel like a balding guy in a wind tunnel.
I decide it’s time to buy a hat, so it's off to the mall to see what I can find. I have baseball hats galore, but I want to find some cool hats that will cover more of my head. I’m all over the mall, but can find nothing except hats for people with tiny, perfectly shaped heads. I finally stumble into the Hat Works – duh, that’s all they do, hats. They have a wide variety of hats (logo hats, stretch, etc.), but I want to look cool, not hip-hop or like a skater boy. I try on a million different hats while this poor kid behind the counter watches me with a wide-eyed, horrified look on his face. I think he is judging my selection of hats, but soon realize that each time I try on a hat, more and more of my hair falls out. By the end of my time there, my hair is a matted, patchy mess. I pay for my hats, trying not to make eye contact and get out of there. I still wonder what was going through his mind that day.
When I get home I shave the rest of my head with a razor. Now, I’m totally bald and have chemo the next day. This sucks. I could get through one round, but five more times? Ugh.
The next entry is here.
Late October 2009
I feel great the week of treatment once I get by Tuesday’s chemo ‘hangover’. It’s probably the Prednisone. I even play golf the Friday after treatment with a group of friends and have a great time. But then Saturday hits me square in the gut. I wake up in the morning with horrible stomach problems. My guts feel like I ate a bowl of melted cheese, with a side of melted cheese and a little man is inside me churning his way through the melted cheese. I can’t think of another way to describe it – a stomach full of melted cheese. I have cramps, feel disjointed and distended and cannot get out of bed. I can barely move all day.
The next day and I’m a still a wreck and dog-tired all day. I’ve been warned about the side effects of coming off Prednisone. I’m taking huge doses during the first 5-days of treatment, but then get cut-off until the next cycle in three weeks. I’m jittery all day with my emotions swinging from anger, to sadness and overwhelming frustration. The broccoli I’m chopping for dinner doesn’t stand a chance. I have to go outside and take a breather. If I didn’t feel so crappy, I would go for a run to chill-out. It doesn’t matter, I need to do something about this; this cannot be healthy.
I will continue to feel like junk through the chemo downtime. While I can function and get through my daily routine, I have a constant, underlying feeling of fogginess, aches and a general malaise. It is a feeling I will come to call throughout this entire process, as ‘feeling thick’.
November 2009
They’ve warned me to expect the side-effects I’m having, along with hair loss in the first 10 days. But here it is 10 days post-treatment and, while I do feel like crap, still no hair loss. Win! However, just a few days later I wake up with my scalp burning, like that feeling you have when you bump you head on an open cabinet door. As I try to recall the incident, I panic and realize this is the first sign of my hair falling out. There is no visible loss and Christina doesn’t see anything, but it still disconcerts me. I usually wear my hair short, and a little spiky, and my fears are soon realized as I put product in my hair and tufts of it stick to my fingers. I’m looking like a bad radiation special-effect from a B-movie.
I decide to get my hair cut SHORT this week; ‘high and tight’ we used to say to our ROTC friends in college. I figure that once my hair falls out in 2 – 3 weeks, most people will be used to me with little or no hair. I use the free coupon to Sports Clips that we handed out at the Pumpkin Race to all runners, but chicken-out on getting it shaved. The girl cutting my hair flirts with me, telling me how ‘cool’ it looks and that it makes me look ‘young and hip’. Right. I know she is lying because it doesn’t fit my big, giant and now almost bald head. She’s looking for a tip, and I’m not mad, just laughing about it. I tip her the amount of the haircut - $13.
I’m starting to get odd emails from people I don’t really know wishing me well, and runners have started talking about it in the community. I started this treatment process in April, wanting to keep it close to the vest and not tell the world. Handle it on my own. The reactions from the few I’ve told range from shock, concern, jokes, personal stories and even separation. Everybody deals with it in a different way, but I guess I should have realized that not everyone will keep it as close to the vest as I would want. Exactly the opposite of what I wanted to do, control the message. Maybe it’s because I don’t want them to feel sorry for me? Think less of me?
I’m having constant dreams about hair loss – but on my calves. In my dream, I’ve lost hair on my calf in odd, geometric designs. I know this is an allegory of my fears of losing my hair in patches. My hair continues to fall out and I continue to ignore it, choosing to see the remaining hair ON my head, (not on the floor or in the shower), like a true bald dude. But when I run my hand through my hair, it looks like I'm petting a shedding dog, large chunks of hair floating through the air to settle on the floor.
November 15 – Is Bald Beautiful?
It’s November 15 and my hair is really starting to fall out in clumps. I make the mistake of blow-drying my hair this morning (well what’s left), and I feel like a balding guy in a wind tunnel.
I decide it’s time to buy a hat, so it's off to the mall to see what I can find. I have baseball hats galore, but I want to find some cool hats that will cover more of my head. I’m all over the mall, but can find nothing except hats for people with tiny, perfectly shaped heads. I finally stumble into the Hat Works – duh, that’s all they do, hats. They have a wide variety of hats (logo hats, stretch, etc.), but I want to look cool, not hip-hop or like a skater boy. I try on a million different hats while this poor kid behind the counter watches me with a wide-eyed, horrified look on his face. I think he is judging my selection of hats, but soon realize that each time I try on a hat, more and more of my hair falls out. By the end of my time there, my hair is a matted, patchy mess. I pay for my hats, trying not to make eye contact and get out of there. I still wonder what was going through his mind that day.
When I get home I shave the rest of my head with a razor. Now, I’m totally bald and have chemo the next day. This sucks. I could get through one round, but five more times? Ugh.
The next entry is here.
Sunday, April 11, 2010
Running For My Life - Get On The Bus
I started blogging about running in southern Arizona last year, but when my life took a hard left turn with a diagnosis of Non-Hodgkin’s Lymphoma in April 2009, I started a journal of my experiences, chronicling the good, the bad.....and the ugly. So, over the next few weeks, I hope you’ll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. Follow the links to read the 1st installment.
September 12 - The Ride Begins
If my diagnosis on April 4 was a life-changing day, then September 12th was ‘wake-up and smell the coffee day’. I’m competing in a local race, and even though I feel out of shape, I'm excited at the prospect of gauging my fitness and posting a good time. The gun sounds and I’m out good in the 1st mile, but I absolutely struggle after that. Running through the course, I can barely lift my legs, breathing is tough and I struggle to cross the finish line ahead of some of the walkers. What the hell?
Fortunately I have a routine visit with my primary care doctor, Dr. Alok Sharma, scheduled the next day. I mention being tired and exhausted, tell him about the race. He is concerned and does a blood test in his office. He calls me that night, says he is worried and may send me to the hospital for a transfusion, as my hemoglobin (red blood cells that carry oxygen) counts are below 9. A healthy man my age should be at 14 – 18. No wonder I can’t breathe.
Instead of a hospital visit, Dr. Sharma has me come in the next day for a review. He tells me, in his delightful, East-Indian accent, “I am very impressed Tim, you have been running with such low blood levels. Your tolerance for pain must be very high?” I secretly like this. Runners do have a high tolerance for pain and his comments make me feel good, but I’m pissed because I’m competitive – I want to have high blood levels, better than anyone else. He suspects I’m losing blood internally, perhaps a slow bleed or tear somewhere? He recommends a colonoscopy the following week. Man, I am becoming the king of colonoscopies. My old friend, Dr. Sanner confirms those fears, noting the large lymph node in my abdomen is causing ulcers on my lower GI tract, leading to a slow bleed. Now I understand what Dr. Persky was “watching for” while we were “waiting”.
October 2009
It’s early October and Dr. Persky tells I can no longer delay treatment for my Lymphoma. I have several options, but considering the severity of my cancer, I opt into a clinical trial he has developed, combining three of the most aggressive and effective therapies. It includes a series of six chemotherapy treatments, followed by radio-isotopes delivering targeted radiation and then Rituxin ‘maintenance’ for a few years. Most people with Lymphoma receive just one or two of these. I’m confident it’s the right move and sign up on the spot. I select October 26th as my start date, again delaying this thing as long as possible. October is a busy month for me, including a Mexico vacation and an event I’ve been planning for months. I can’t get bogged down with treatment, right?
I hustle through the same tests to 're-stage' my Lymphoma (CAT Scan, bone marrow, etc.) as before, because we have a weeklong trip to Cancun planned in just a few days. An all-inclusive stay at Moon Palace paid for by my wife’s company – Arbonne. We proceed to eat, drink, swim and relax. It’s a nice break, but always the 26th looms over my head, the day I start treatment.
It’s Saturday, October 24, and I’m at The Great Pumpkin Race, an event I’ve been planning for months. Past editions of this race had only 50 - 65 runners, and I’m not sure what to expect. But on this day, more than 500 runners show up, clearly a victory for all involved. But I’m overwhelmed, exhausted and nervous. I’ve been able to keep myself distracted this month with everything, but it hits me on the drive home - I start chemo on Monday. I start to cry. I cry writing emails thanking my friends for their help, I cry like you do at those g-damn Christmas commercials when you’re home by yourself. I’m sobbing. I don’t know, is crying good for me?
October 26 – Get on the Bus
Monday arrives and we head early to the Cancer Center, and instead of a shared treatment room, I am assigned a private infusion room at the Arizona Cancer Center. Wow, this is too cool – the private room has cable, wi-fi and snacks. Nice.
Sara is my nurse all day; she has 22-years experience and a calm demeanor. She tells me I have nice veins, making me laugh. For some odd reason, I’m always proud of this. She explains the process, easing my fears and making me feel better. It gets even better when she gives me a big shot of Benadryl (for anticipated histamine reactions), kind of like a double margarita at 10:30 a.m. This is going to be OK.
I started the steroid, Prednisone this week to offset any expected side-effects and I feel great. I’m flying through the regimen and I’m excited because I’m not having any of the nausea or side-effects Sara asked me to track on. We jump right to Rituxin – a drug specifically meant to fight Lymphoma. I have an initial chest tightness, but I don’t tell her as it goes away in a few minutes. It feels similar to an asthma attack. But half-way through, another chest tightness that I can’t shake, even with all my tricks of controlling my breathing and slowing my heart rate I learned as a competitive runner. Nurses are called, doctors, etc. I’m pissed because they mention keeping me overnight. I want this to be done TODAY. Thankfully, some additional Benadryl kicks in 30-minutes later, making everything good.
I think about my local running club – The Workout Group. I’ve made good friends there and have found a ‘core’ bunch that matches my speed and fitness level. At the end of a hard I workout, I always like to talk a little smack. “Hey, want to race to the finish? Wanna bet?” I’ll ask, adding, “how much money do you have in your pocket?? – let’s go!” as I speed off ahead. Cash is very rarely exchanged, but it's a fun way to end the night.
I find myself doing the same thing with my cancer nurse. It’s coming to the end of a LONG day and it’s a guessing game about what time I’ll be done. I do the math in my head and say 6:35 (the nurses guess 7:00) and “will be heading out at 6:36”. I ask her how much money she has in her pocket, “wanna bet?” The last bit of Rituxin drops into my vein at 6:35, but since there is only one nurse on call at the time, she doesn’t get to my room until 6:38. I count it as a ‘win’ anyway. Anything to make this day a victory.
Walking out of the Center, I’m foggy and feeling like I've been drinking beers since 10 a.m., stopped at 4 p.m. and here it is 3-hours later with no sleep and I’m feeling wide-awake, hung-over. Yes, it’s scary I know what this feels like. Tuesday I wake up feeling like shit, head thick, mouth dry and voice crackly deep, like I smoked a pack of cigarettes along with the beers. Surprisingly, it is like a hangover, my throbbing head and fogginess get better throughout the morning. This may be OK.
Think again.
September 12 - The Ride Begins
If my diagnosis on April 4 was a life-changing day, then September 12th was ‘wake-up and smell the coffee day’. I’m competing in a local race, and even though I feel out of shape, I'm excited at the prospect of gauging my fitness and posting a good time. The gun sounds and I’m out good in the 1st mile, but I absolutely struggle after that. Running through the course, I can barely lift my legs, breathing is tough and I struggle to cross the finish line ahead of some of the walkers. What the hell?
Fortunately I have a routine visit with my primary care doctor, Dr. Alok Sharma, scheduled the next day. I mention being tired and exhausted, tell him about the race. He is concerned and does a blood test in his office. He calls me that night, says he is worried and may send me to the hospital for a transfusion, as my hemoglobin (red blood cells that carry oxygen) counts are below 9. A healthy man my age should be at 14 – 18. No wonder I can’t breathe.
Instead of a hospital visit, Dr. Sharma has me come in the next day for a review. He tells me, in his delightful, East-Indian accent, “I am very impressed Tim, you have been running with such low blood levels. Your tolerance for pain must be very high?” I secretly like this. Runners do have a high tolerance for pain and his comments make me feel good, but I’m pissed because I’m competitive – I want to have high blood levels, better than anyone else. He suspects I’m losing blood internally, perhaps a slow bleed or tear somewhere? He recommends a colonoscopy the following week. Man, I am becoming the king of colonoscopies. My old friend, Dr. Sanner confirms those fears, noting the large lymph node in my abdomen is causing ulcers on my lower GI tract, leading to a slow bleed. Now I understand what Dr. Persky was “watching for” while we were “waiting”.
October 2009
It’s early October and Dr. Persky tells I can no longer delay treatment for my Lymphoma. I have several options, but considering the severity of my cancer, I opt into a clinical trial he has developed, combining three of the most aggressive and effective therapies. It includes a series of six chemotherapy treatments, followed by radio-isotopes delivering targeted radiation and then Rituxin ‘maintenance’ for a few years. Most people with Lymphoma receive just one or two of these. I’m confident it’s the right move and sign up on the spot. I select October 26th as my start date, again delaying this thing as long as possible. October is a busy month for me, including a Mexico vacation and an event I’ve been planning for months. I can’t get bogged down with treatment, right?
I hustle through the same tests to 're-stage' my Lymphoma (CAT Scan, bone marrow, etc.) as before, because we have a weeklong trip to Cancun planned in just a few days. An all-inclusive stay at Moon Palace paid for by my wife’s company – Arbonne. We proceed to eat, drink, swim and relax. It’s a nice break, but always the 26th looms over my head, the day I start treatment.
It’s Saturday, October 24, and I’m at The Great Pumpkin Race, an event I’ve been planning for months. Past editions of this race had only 50 - 65 runners, and I’m not sure what to expect. But on this day, more than 500 runners show up, clearly a victory for all involved. But I’m overwhelmed, exhausted and nervous. I’ve been able to keep myself distracted this month with everything, but it hits me on the drive home - I start chemo on Monday. I start to cry. I cry writing emails thanking my friends for their help, I cry like you do at those g-damn Christmas commercials when you’re home by yourself. I’m sobbing. I don’t know, is crying good for me?
October 26 – Get on the Bus
Monday arrives and we head early to the Cancer Center, and instead of a shared treatment room, I am assigned a private infusion room at the Arizona Cancer Center. Wow, this is too cool – the private room has cable, wi-fi and snacks. Nice.
Sara is my nurse all day; she has 22-years experience and a calm demeanor. She tells me I have nice veins, making me laugh. For some odd reason, I’m always proud of this. She explains the process, easing my fears and making me feel better. It gets even better when she gives me a big shot of Benadryl (for anticipated histamine reactions), kind of like a double margarita at 10:30 a.m. This is going to be OK.
I started the steroid, Prednisone this week to offset any expected side-effects and I feel great. I’m flying through the regimen and I’m excited because I’m not having any of the nausea or side-effects Sara asked me to track on. We jump right to Rituxin – a drug specifically meant to fight Lymphoma. I have an initial chest tightness, but I don’t tell her as it goes away in a few minutes. It feels similar to an asthma attack. But half-way through, another chest tightness that I can’t shake, even with all my tricks of controlling my breathing and slowing my heart rate I learned as a competitive runner. Nurses are called, doctors, etc. I’m pissed because they mention keeping me overnight. I want this to be done TODAY. Thankfully, some additional Benadryl kicks in 30-minutes later, making everything good.
I think about my local running club – The Workout Group. I’ve made good friends there and have found a ‘core’ bunch that matches my speed and fitness level. At the end of a hard I workout, I always like to talk a little smack. “Hey, want to race to the finish? Wanna bet?” I’ll ask, adding, “how much money do you have in your pocket?? – let’s go!” as I speed off ahead. Cash is very rarely exchanged, but it's a fun way to end the night.
I find myself doing the same thing with my cancer nurse. It’s coming to the end of a LONG day and it’s a guessing game about what time I’ll be done. I do the math in my head and say 6:35 (the nurses guess 7:00) and “will be heading out at 6:36”. I ask her how much money she has in her pocket, “wanna bet?” The last bit of Rituxin drops into my vein at 6:35, but since there is only one nurse on call at the time, she doesn’t get to my room until 6:38. I count it as a ‘win’ anyway. Anything to make this day a victory.
Walking out of the Center, I’m foggy and feeling like I've been drinking beers since 10 a.m., stopped at 4 p.m. and here it is 3-hours later with no sleep and I’m feeling wide-awake, hung-over. Yes, it’s scary I know what this feels like. Tuesday I wake up feeling like shit, head thick, mouth dry and voice crackly deep, like I smoked a pack of cigarettes along with the beers. Surprisingly, it is like a hangover, my throbbing head and fogginess get better throughout the morning. This may be OK.
Think again.
Wednesday, April 7, 2010
Running For My Life - Diagnosis
When I was asked to start this blog about running in southern Arizona a year ago, I decided to write about running and the way it affects our lives. I didn’t want to write about training regimens, workouts or running techniques. I wanted to share the joy of running and the people and places that make it great. Over the course of a few months I feel I did just that. But my life took a hard left turn in April of 2009 when I was diagnosed with Stage 4, Non-Hodgkin’s Follicular Lymphoma. Over the next few weeks, I hope you’ll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can read the 1st installment here.
April 2009
Dr. Sanner’s words keep me in a state of shock for days. I keep thinking that maybe I heard him wrong, or that the CAT Scan could have been mis-read. Anything but this.
For good or bad, I’m an information junky. My background is in broadcast journalism, and I religiously follow the newspaper, entertainment industry, and other news outlets. Let’s just say I have a need to know what’s going on. My online research leads to wildly different expectations about Non-Hodgkin’s Lymphoma survival and treatment. 34-months average life expectancy, although remission is highly possible, some treatments work better than others and even a possible vaccine. I’m confused. Is this treatable or not? How long do people live with this crap?
Dr. Sanner refers me to the Arizona Cancer Center, one of the top rated Lymphoma research/treatment facilities in the country. On my first day I’m met by a concierge (no kidding), and given a tour of the facility. I’m apprehensive, scared and overwhelmed having to be here, but this really helps. I feel lucky to get referred to Dr. Daniel Persky, a smart, young and cocky doc from Russia who is just 34-years-old. I like him. He answers all of my questions, allowing me to entertain different ‘what-if’ scenarios, but always focusing on treatment. He estimates that I am likely at Stage 3-4, but to be sure, he orders another CAT Scan, blood work, a bone marrow test and a biopsy a few weeks later. My surgeon at the University Medical Center is even cockier – like my pilot friends in the Air Force – I want my surgeon to be cocky, have confidence. Instead of opening my abdomen to get a sample, he goes through my belly button, leaving no visible scars. Wow.
May - June 2009
I go through all of my tests with flying colors. Although to fully ‘stage’ the disease they conduct a bone marrow test to see if the Lymphoma is present. This one is the hardest. Throughout this process I keep getting comments about my low heart rate – in the 50s, my veins –“awesome”, and my bone density. This secretly pleases me as I am competitive and proud to be in good shape. Sandy Curtin does my bone marrow test – basically they stick a corkscrew through the hip bone and pull out a core sample. She is visibly sweating and breathing heavy after the procedure because my bones are dense. She comments that she may have to start doing arm exercises if I come back. It doesn’t hurt to stick the corkscrew into my bone marrow, Lidocaine takes care of that. It hurts when they suck the bone marrow out – hurts like hitting your funny bone while getting an electric shock at the same time. I yell a little bit, and keep the joy that she had to work so hard to get it, to myself.
Early June at my appointment for official staging and I’m nervous, hopeful, scared; you name it and I’m feeling it today. Dr. Persky gives it to me straight. Non-Hodgkin’s Lymphoma, Type B (10% involvement in the bone marrow), Follicular Lymphoma, Stage 4. Basically a slow growing cancer that I’ve probably had for the past 3-4 years. Crap! Unfortunately I've learned a lot about cancer with family and friends suffering from different types of cancer in the past few years. All I can think is that Stage 4 with most cancers is BAD. But Dr. Persky assures me that Lymphoma is different, that staging has everything to do with size, bone marrow involvement and other factors. My node is approx. 11 cm by 5 cm. Normal size averages 1 cm X 1 cm.
Although it has shrunk by tenths, Persky reminds me that lymph nodes will “wax and wane”. I have no other symptoms other than being tired – but I’m always tired. Dr. Persky recommends treatment. “What will happen if I don’t?" I ask. “We will watch and wait”, he says. “Wait for what?", I say. “For something to happen”, he says ominously, pointing his index finger at my stomach.
It is a difficult decision, but I elect to forgo treatment for the time being. I realize that I am apprehensive and looking for a way to postpone it. During this process I’m introduced to Low Dose Naltrexone. An experimental drug for auto-immune disease, its traditional use in the regular dose is for severe alcoholics. Taken at night, at 1/10 its regular dose, it is thought to interfere with production of certain cells that indicate Lymphoma, MS, HIV, etc. I am excited at the prospect and it makes it easier to rationalize my decision.
Summer 2009
I’ve only told a handful of friends and family about my diagnosis, preferring to keep the news to myself. I guess I don’t want to deal with explaining the process, the diagnosis and the disease. I prefer not to think about it. Perhaps it will go away.
All summer I’m feeling great, enjoying getting back to running to take my mind off the past few months. In July, I take 3rd in my age group at the City of Tucson Cross Country Meets Grand Prix and run a 6:20 mile and 2:48 half-mile with hardly any training. By August I am running great, getting lots of comments that I am doing secret training on the side. I’m not, just running twice a week. I’m excited at the prospect of the upcoming racing season.
September 2009
A run in Prescott leaves me exhausted and tired, but I credit it to the mile-high altitude. However, I notice that I am just tired and dying at the end of all my workouts. My quads are heavy, my breathing is hard to regulate and I don’t have the pep I used to. I write it off to being in bad shape. But I’m mad because my expectations are high. I was an all-region, all-state runner back in the day. I was lucky enough to compete in college. I’m still competitive, but can’t understand why I’m not running faster. I always, always attribute it to being out of shape. That assumption is about to change.
You can read the next installment here.
April 2009
Dr. Sanner’s words keep me in a state of shock for days. I keep thinking that maybe I heard him wrong, or that the CAT Scan could have been mis-read. Anything but this.
For good or bad, I’m an information junky. My background is in broadcast journalism, and I religiously follow the newspaper, entertainment industry, and other news outlets. Let’s just say I have a need to know what’s going on. My online research leads to wildly different expectations about Non-Hodgkin’s Lymphoma survival and treatment. 34-months average life expectancy, although remission is highly possible, some treatments work better than others and even a possible vaccine. I’m confused. Is this treatable or not? How long do people live with this crap?
Dr. Sanner refers me to the Arizona Cancer Center, one of the top rated Lymphoma research/treatment facilities in the country. On my first day I’m met by a concierge (no kidding), and given a tour of the facility. I’m apprehensive, scared and overwhelmed having to be here, but this really helps. I feel lucky to get referred to Dr. Daniel Persky, a smart, young and cocky doc from Russia who is just 34-years-old. I like him. He answers all of my questions, allowing me to entertain different ‘what-if’ scenarios, but always focusing on treatment. He estimates that I am likely at Stage 3-4, but to be sure, he orders another CAT Scan, blood work, a bone marrow test and a biopsy a few weeks later. My surgeon at the University Medical Center is even cockier – like my pilot friends in the Air Force – I want my surgeon to be cocky, have confidence. Instead of opening my abdomen to get a sample, he goes through my belly button, leaving no visible scars. Wow.
May - June 2009
I go through all of my tests with flying colors. Although to fully ‘stage’ the disease they conduct a bone marrow test to see if the Lymphoma is present. This one is the hardest. Throughout this process I keep getting comments about my low heart rate – in the 50s, my veins –“awesome”, and my bone density. This secretly pleases me as I am competitive and proud to be in good shape. Sandy Curtin does my bone marrow test – basically they stick a corkscrew through the hip bone and pull out a core sample. She is visibly sweating and breathing heavy after the procedure because my bones are dense. She comments that she may have to start doing arm exercises if I come back. It doesn’t hurt to stick the corkscrew into my bone marrow, Lidocaine takes care of that. It hurts when they suck the bone marrow out – hurts like hitting your funny bone while getting an electric shock at the same time. I yell a little bit, and keep the joy that she had to work so hard to get it, to myself.
Early June at my appointment for official staging and I’m nervous, hopeful, scared; you name it and I’m feeling it today. Dr. Persky gives it to me straight. Non-Hodgkin’s Lymphoma, Type B (10% involvement in the bone marrow), Follicular Lymphoma, Stage 4. Basically a slow growing cancer that I’ve probably had for the past 3-4 years. Crap! Unfortunately I've learned a lot about cancer with family and friends suffering from different types of cancer in the past few years. All I can think is that Stage 4 with most cancers is BAD. But Dr. Persky assures me that Lymphoma is different, that staging has everything to do with size, bone marrow involvement and other factors. My node is approx. 11 cm by 5 cm. Normal size averages 1 cm X 1 cm.
Although it has shrunk by tenths, Persky reminds me that lymph nodes will “wax and wane”. I have no other symptoms other than being tired – but I’m always tired. Dr. Persky recommends treatment. “What will happen if I don’t?" I ask. “We will watch and wait”, he says. “Wait for what?", I say. “For something to happen”, he says ominously, pointing his index finger at my stomach.
It is a difficult decision, but I elect to forgo treatment for the time being. I realize that I am apprehensive and looking for a way to postpone it. During this process I’m introduced to Low Dose Naltrexone. An experimental drug for auto-immune disease, its traditional use in the regular dose is for severe alcoholics. Taken at night, at 1/10 its regular dose, it is thought to interfere with production of certain cells that indicate Lymphoma, MS, HIV, etc. I am excited at the prospect and it makes it easier to rationalize my decision.
Summer 2009
I’ve only told a handful of friends and family about my diagnosis, preferring to keep the news to myself. I guess I don’t want to deal with explaining the process, the diagnosis and the disease. I prefer not to think about it. Perhaps it will go away.
All summer I’m feeling great, enjoying getting back to running to take my mind off the past few months. In July, I take 3rd in my age group at the City of Tucson Cross Country Meets Grand Prix and run a 6:20 mile and 2:48 half-mile with hardly any training. By August I am running great, getting lots of comments that I am doing secret training on the side. I’m not, just running twice a week. I’m excited at the prospect of the upcoming racing season.
September 2009
A run in Prescott leaves me exhausted and tired, but I credit it to the mile-high altitude. However, I notice that I am just tired and dying at the end of all my workouts. My quads are heavy, my breathing is hard to regulate and I don’t have the pep I used to. I write it off to being in bad shape. But I’m mad because my expectations are high. I was an all-region, all-state runner back in the day. I was lucky enough to compete in college. I’m still competitive, but can’t understand why I’m not running faster. I always, always attribute it to being out of shape. That assumption is about to change.
You can read the next installment here.
Saturday, April 3, 2010
Running For My Life
When I was asked to start this blog about running in southern Arizona a few years ago, I decided to write about running and the way it affects our lives. I didn't want to write about training regimens, workouts or running techniques. I wanted to share the joy of running and the people and places that make it great. Over the course of a few months I feel I did just that. The experiences of Jolene Jones, running races and old friends inspired me – until my life took a hard left turn. On April 4, 2009 I was diagnosed with Stage 4, Non-Hodgkin’s Follicular Lymphoma. Over the next few weeks, I hope you'll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all.
Spring 2007
My journey begins oddly enough with my left big toe. I have bird feet, long skinny things with curled up toes, beat up from years of running and wearing too small shoes. In fact, I wore size 10’s forever because someone told me when I started buying dress shoes, to buy shoes that are snug, because good leather shoes would stretch. I suffered through sore toes, achy feet and a limpy gait all in vain, waiting for shoes that never did stretch. It wasn't until my wife pointed out I was really a size 12 that I bought a pair of shoes that fit. That was a revelation, and one of the many reasons why I married her.
Anyway, I don’t like my feet very much, and I don’t like for them to be touched, hell, even I don’t like touching them. But I notice that I can’t really move my left big toe – up, down, sideways, no matter how I try, it doesn't really move. You know when the shoe salesman tells you to lift your toe? (You just did it, didn't you?) Well, I can’t do it. Years ago as a runner in high school, I had a stress fracture in my foot requiring a visit to to a local podiatrist. He worked with the University of Arizona runners and world class athletes. He was good. 25 years later I visit that old-time podiatrist and find that his attitude towards running has changed a bit. He is worried about the condition and tells me in good conscience he cannot recommend that I keep running. That is not an option, so I in good conscience look for another doctor that will give me better advice, advice that I will like.
But my left big toe starts the journey and leads me to a local physiatrist, a nerve doctor – Dr. Toby Freebourn. It’s funny the way people come in and out of our lives. Toby is an old cross country teammate of mine from Sabino High School, a few years younger than me. I haven't seen him for in 20+ years and we take a few minutes to get caught up. We had a good team back then and it’s good to reconnect and catch up. Toby recommends a series of tests gauging the electrical conductivity of my nervous system. Basically these tests are zapping your nerves in a series of places to see how they are conducting electrical signals. Think of sticking a fork in an outlet on about 20 different places on the left side of your body…yep, ouch.
We narrow it down to my left calf, a place about 6 inches below my knee where the nerve is losing its signal, causing the Mononeuropathy in my toe. Toby asks if I’ve had any injuries or traumas that I can recall? I can’t think of any. He does mention that I have low levels of B-12, or ‘low normal’. Absence of B-12 can be an indication and perhaps cause, neuropathy in the extremities. Many things can cause low B-12 – among them: trauma, poor diet, extreme alcoholism, Irritable Bowel Syndrome….and as I learn later, in very rare cases, Lymphoma. Lymphoma? It is an initial clue….
September 2007
I notice that I’m going to the bathroom funny, but I think it’s related to my diet and really don’t think too much about it. I’m running well but am often tired and exhausted. But like a lot of men, I keep my health issues close to the vest. I’ve not really mentioned to anyone what’s going health-wise outside of my big toe. I've been to neurologists, physiatrists, and other experts to see if i can fix my toe. After about six months, I finally mention to my wife, Christina, about the bathroom changes. She scolds me and says I should go to the doctor, but like most men, I say, “Why, I’m healthy!" I run a lot, work-out, and I am in pretty good shape.
I schedule a colonoscopy in April 2008, a three-day process better left unwritten. My bathroom habits and a hard mass in my lower abdomen, along with the colonoscopy results point to Crohn’s Disease as the likely culprit. At the time it made sense. Half my family has Celiac Disease or leads a healthier life by eating a gluten free diet, plus my mom is lactose intolerant. I track my diet for a month but no real triggers (the usual wheat, lactose, etc.) make themselves apparent. I go through suffering cramps every couple of months. I think its spinach. I jokingly ask my doctor if Crohn’s Disease can cause neuropathy. Yes I’m told, because it screws the body’s ability to absorb B-12. Perhaps the mystery of the toe is solved?
September 2008
The drugs intended to treat Crohn’s Disease - Endocort and Asacol - seem to work slightly, but I’m taking a lot of them. Too much Endocort can lead to sinus infections, and low level colds, and I’m starting to get run-down. It’s affecting my ability to run so I take myself off in September 2008 and stick with Asacol. But I’m still not getting better- I continue to run but am getting slower and slower. I don’t need to be the best runner, but I’d like to improve, or at least be the same. I go back to my Gastro guy, Dr. Charles Sanner, the acknowledged leading Gastroentologist in Tucson. He does not have the best bedside manner, very analytical and evasive when it comes to answering questions, but he is very good at what he does. He recommends a CAT scan in April 2009. I don’t know it yet but the train is leaving the station….
April 4, 2009
I’m at my mom’s house watering her plants while she’s on vacation. My cell phone rings - a direct call from Dr. Sanner’s office is odd because usually with him it’s an in-office consultation, never a phone call. I answer and just like an office visit, he is very clinical, explaining things to me in a matter of fact kind of way. A 20-second phone call changes my life forever.
"You have a tumor or a series of tumors in your abdomen", Dr. Sanner tells me. ‘The mass in your abdomen is an enlarged lymph node, Non-Hodgkin’s Lymphoma’’. My mind is a blank. I panic and ask "what is that"? "Cancer" he says. My mind is racing. I should ask more questions but all I'm thinking, is Hodgkin’s bad, so non-Hodgkin’s is good? I hang up and call my wife. I’m in shock.
My 2nd entry in this odyssey is here.
Spring 2007
My journey begins oddly enough with my left big toe. I have bird feet, long skinny things with curled up toes, beat up from years of running and wearing too small shoes. In fact, I wore size 10’s forever because someone told me when I started buying dress shoes, to buy shoes that are snug, because good leather shoes would stretch. I suffered through sore toes, achy feet and a limpy gait all in vain, waiting for shoes that never did stretch. It wasn't until my wife pointed out I was really a size 12 that I bought a pair of shoes that fit. That was a revelation, and one of the many reasons why I married her.
Anyway, I don’t like my feet very much, and I don’t like for them to be touched, hell, even I don’t like touching them. But I notice that I can’t really move my left big toe – up, down, sideways, no matter how I try, it doesn't really move. You know when the shoe salesman tells you to lift your toe? (You just did it, didn't you?) Well, I can’t do it. Years ago as a runner in high school, I had a stress fracture in my foot requiring a visit to to a local podiatrist. He worked with the University of Arizona runners and world class athletes. He was good. 25 years later I visit that old-time podiatrist and find that his attitude towards running has changed a bit. He is worried about the condition and tells me in good conscience he cannot recommend that I keep running. That is not an option, so I in good conscience look for another doctor that will give me better advice, advice that I will like.
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| 1984 Sabino Cross Country Team. 25 years later, three people on this team will help in the greatest challenge of my life. |
We narrow it down to my left calf, a place about 6 inches below my knee where the nerve is losing its signal, causing the Mononeuropathy in my toe. Toby asks if I’ve had any injuries or traumas that I can recall? I can’t think of any. He does mention that I have low levels of B-12, or ‘low normal’. Absence of B-12 can be an indication and perhaps cause, neuropathy in the extremities. Many things can cause low B-12 – among them: trauma, poor diet, extreme alcoholism, Irritable Bowel Syndrome….and as I learn later, in very rare cases, Lymphoma. Lymphoma? It is an initial clue….
September 2007
I notice that I’m going to the bathroom funny, but I think it’s related to my diet and really don’t think too much about it. I’m running well but am often tired and exhausted. But like a lot of men, I keep my health issues close to the vest. I’ve not really mentioned to anyone what’s going health-wise outside of my big toe. I've been to neurologists, physiatrists, and other experts to see if i can fix my toe. After about six months, I finally mention to my wife, Christina, about the bathroom changes. She scolds me and says I should go to the doctor, but like most men, I say, “Why, I’m healthy!" I run a lot, work-out, and I am in pretty good shape.
I schedule a colonoscopy in April 2008, a three-day process better left unwritten. My bathroom habits and a hard mass in my lower abdomen, along with the colonoscopy results point to Crohn’s Disease as the likely culprit. At the time it made sense. Half my family has Celiac Disease or leads a healthier life by eating a gluten free diet, plus my mom is lactose intolerant. I track my diet for a month but no real triggers (the usual wheat, lactose, etc.) make themselves apparent. I go through suffering cramps every couple of months. I think its spinach. I jokingly ask my doctor if Crohn’s Disease can cause neuropathy. Yes I’m told, because it screws the body’s ability to absorb B-12. Perhaps the mystery of the toe is solved?
September 2008
The drugs intended to treat Crohn’s Disease - Endocort and Asacol - seem to work slightly, but I’m taking a lot of them. Too much Endocort can lead to sinus infections, and low level colds, and I’m starting to get run-down. It’s affecting my ability to run so I take myself off in September 2008 and stick with Asacol. But I’m still not getting better- I continue to run but am getting slower and slower. I don’t need to be the best runner, but I’d like to improve, or at least be the same. I go back to my Gastro guy, Dr. Charles Sanner, the acknowledged leading Gastroentologist in Tucson. He does not have the best bedside manner, very analytical and evasive when it comes to answering questions, but he is very good at what he does. He recommends a CAT scan in April 2009. I don’t know it yet but the train is leaving the station….
April 4, 2009
I’m at my mom’s house watering her plants while she’s on vacation. My cell phone rings - a direct call from Dr. Sanner’s office is odd because usually with him it’s an in-office consultation, never a phone call. I answer and just like an office visit, he is very clinical, explaining things to me in a matter of fact kind of way. A 20-second phone call changes my life forever.
"You have a tumor or a series of tumors in your abdomen", Dr. Sanner tells me. ‘The mass in your abdomen is an enlarged lymph node, Non-Hodgkin’s Lymphoma’’. My mind is a blank. I panic and ask "what is that"? "Cancer" he says. My mind is racing. I should ask more questions but all I'm thinking, is Hodgkin’s bad, so non-Hodgkin’s is good? I hang up and call my wife. I’m in shock.
My 2nd entry in this odyssey is here.
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