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 4
th 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 1
st 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 5
th 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.