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. I've appreciated your encouragement of my sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can start at the beginning here.
January 20, 2010
I’m apprehensive going to treatment today because of the delay due to my blood levels two days ago. I’m visited by the same pre-nausea and anxiety as last time and dread this 5th treatment. I’m really getting tired of this.
Throughout this process I’m always impressed with the timeliness and efficiency of the Cancer Center staff, nurses and doctors. Patients receive a pager at each visit, kind of like those at The Outback or Applebee’s, you know the circular round ones that vibrate and light up when your table is ready. At the Cancer Center they have a digital screen directing you where to go, and always end with ‘have a great day!’ Really? Thanks…
After my blood draw the pager directs me to the infusion center with no visit to the doctor. My blood levels must have passed inspection so it’s off to the chair. As usual I have a different nurse, a nice lady that introduces herself as a recent transplant from Ohio. We comment on the snow and laugh that the weather is warmer back east than in Tucson. She comments that my blood levels have risen dramatically since Monday, re-enforcing my thought that I am a 22-23 day recovery guy.
I’m always starving after my treatments due to the Prednisone steroids and purposefully empty stomach during a treatment. I learned in the first two visits that anything I eat before a chemo session is automatically added to the ‘foods I will hate forever’ list. In addition to the many side effects of chemotherapy (hair loss, tingly fingers, etc.), some patients also lose their sense of taste. Oddly I’ve lost my ability to taste salt or hot spicy seasonings in all food. I’m sadly reminded of this at the movies when I couldn’t enjoy one of my favorites – movie popcorn. I guess on the flip side I could probably win a salsa eating contest if I was up for it....
My friend Randy Accetta called me to say hello and check in. He mentions that my Workout Group friends have asked when I might be coming back. I tell him that I’m waiting until after my treatments end, but I know the real reason is I’m concerned about the way I look and the reactions I might get. He mentions that many of my friends plan to run The Sun Run in a few days and would love to see me. I reluctantly agree to go.
January 24, 2010
I do venture out early Sunday morning for the Sun Run. I’ve been hesitant and nervous for a few days since deciding to go. In fact, I’ve talked myself into and out of going many times. But I’m up early on this cold morning and ready to go – I’ve even planned my wardrobe several days in advance with running clothes and a skull cap laid out well in advance. I think I’m more nervous about the way I look, bald and somewhat gaunt, than seeing my friends. On top of these worries, my voice continues to be hoarse from the steroids and chemo. I sound like a teenager going through puberty. It’s frustrating because I normally have a good speaking voice, able to talk to large groups and be heard.
I arrive at the race and immediately see some of my Workout Group friends. I get lots of hugs and praise for seeing me and think this could actually be OK. I’m there to take pictures for the Southern Arizona Roadrunners Facebook Page that I manage, so I get right to it. I see more of my friends and am having fun as the race starts. I find myself running from point to point taking pictures and cheering on the runners. Being at a race always gets my competitive fire up and I especially love to cheer those in the back of the pack, 9 times out of 10 they smile or say thanks.
Towards the end of the race day they want to take a group picture. I’m nervous about this and want to stay away from any photo ops – don’t want to get ‘tagged’ on Facebook. My friends keep saying that I can’t leave, pushing me to the front of the group I realize why as Randy calls me up and presents me with an over-sized card with pictures and signed messages by the entire group. It is very, very touching. As they are assembled around me, I feel that a little speech is in order, my worst fear because of my voice and my tendency to cry at any moment. I tell them that I’m glad I came to the race and that I didn’t realize how much I missed them. I update them on my treatments and positive progress. I can see many of them with tears and smiles and I almost lose it at that point. Thankfully I didn’t, but I did cry on the way home.
Ongoing
This most recent treatment has kicked my butt. I have been able to rally and shake it in 2-3 days during prior treatments, but I am wiped out. A call to the Cancer Center isn’t encouraging either. I’m reminded that chemo side-effects are cumulative and my symptoms are normal. There is not much I can do except monitor my symptoms and take the meds they’ve prescribed. So I continue to feel ‘thick’, sleeping a lot and hunkering down, waiting to kick it in on the last lap.
February 10, 2010
Tomorrow will be my last treatment. People ask if I’m excited for this as if it’s Christmas or my birthday. I describe the treatment process this way. Imagine that someone is going to punch you as hard as they can in the face, in fact they tell you they are going to do it six times, once every three weeks. Along the way, they congratulate you and tell you that things are going great and you’re really good at getting punched in the face.
So yeah, tomorrow is my last treatment, but it’s still getting punched in the face. Either way it sucks.
FYI - (I tell a different version of this story to my guy friends; it involves getting kicked in a certain place. They wince, but they get it.)
The next entry is here.
Good luck Tim, and I wish you all the best. I am sure that the treatment and the survival numbers have improved immensely since I was diagnosed with the non-Hodgkin's lymphoma in 2002. Even more important, there have been amazing developments in the treatment regimen. There have been great advances in immunotherapy that much I do know. I had a chemo regimen called CHOP and it did get rid of my lymphoma, but not without a price . One of the chemo drugs I got was adriamycin and after the fact I found out it can have adverse effects on the heart(as much as 15 years later). If this is part of your drug regimen, I would really suggest making your oncologist justify using it. Good luck & get well. The disease is definitely beatable. The fact that I'm still here is proof, and I was a stage 3, and possibly a 4, but they couldn't say for sure.
ReplyDeleteAdo--
ReplyDeleteI too took CHOP, but along with Rituxin it was called R-CHOP. It sort of called to mind eating a big steak at the Chop House. Unfortunately not.
I took into consideration the severity of the treatment versus my Lymphoma and Stage 4 diagnosis. But you are spot on in questioning your treatment and making sure your medical team explains the process, the pros and cons, and the expected outcome. I was lucky to be at the AZ Cancer Center in Tucson, but it didn't mean that I couldn't be an advocate for my health.
I salute you on your fight and survival, cancer patients are the toughest and strongest people I have ever met.