A Pain in the Neck

Tomorrow is Day Zero, as it’s listed on my treatment calendar. In the late morning, I will receive the six million stem cells that were collected a few months ago. I’ve heard doctors and nurses refer to it as a re-birthday.

While tomorrow is the big day, it’s probably going to be relatively anti-climactic. They’ll do the stem cell re-infusion in my room, through my catheter ports, in a series of four injections. Mostly, I’m told, it’s going to be smelly for a day or two, because of the preservatives used for the stem cells.

Beforehand, I’ll get some Benadryl, sure to make me sleepy, as well as Ativan, which they say is for nausea. I was on Ativan briefly when I suffered from panic disorder years ago, and while the drug itself is an anti-anxiety medication, the thought of taking Ativan has always made me irrationally nervous.

The stem cell transplant process really already began a while ago, when I started the radiation treatment. Today, I finish up my last bag of chemotherapy at around 5 pm, and the autologous stem cell infusion, slated for around 11 am, is the very last part of this treatment. (So, right now, almost two steps down and one to go.)

After that, it’s all recovery. People have asked me why they’re giving me these stem cells that they harvested a few months ago. The chemo regimen that I’m on is about four times stronger than the previous high-dose ICE treatments I received, so it damages your bone marrow. (The radiation also has its depleting side effects as well.) My red blood cells will be low, so I’ll experience fatigue, while my low white blood cells will put me at higher risk for infection. Low platelets make you prone to bleeding.

So the stem cells are to give your body a boost towards recovery. In the meantime, however, there’s that dip when everything is low and the side effects are at their maximum for about seven to 10 days—hence the fatigue, nausea, mouth sores, fever and other things expected during this coming week.

I’ve heard multiple times, though, that once your counts come back up, you immediately turn a corner and start to feel better, like a switch going off.

Right now, I’m just starting to feel the side effects and find myself edging on optimum crankiness. It’s that point where you don’t feel well, but still have the energy to potentially be a big jerk if you wanted to be. Overall, I’m going to try to lay low today and slip into my hermit mode.

My throat is dry, and my first mouth sores are appearing. When I eat, my digestive tract is rocked by violent burping that sometimes develops into hiccups.

Tomorrow marks the last step on a fresh start that will hopefully close a year of treatment for my Hodgkin’s lymphoma. I’m only cautiously optimistic, however. While this is supposed to be “the best type of cancer,” with mostly a positive prognosis, having refractory Hodgkin’s lymphoma essentially puts you in the unluckiest of the lucky category. I see and hear stories of people battling Hodgkin’s lymphoma for two, three, eight years out, and it scares me, especially since I have that mysterious spot that still lit up on my last PET scan.

One doctor seems to think it’s Hodgkin’s lymphoma spread to the pancreas, while another doctor doesn’t seem to think that’s possible. All doctors seem confident that this radiation and chemo combo is the best thing for me, so it seems pointless for me to worry. As that old saying goes, worrying is like praying for something you don’t want to happen.

And yet…I worry. As the social worker last week sat down to talk to me and get to the root of my mental well-being, we talked about my fears about this transplant. My biggest fear is that I won’t get better. It’s not death that I fear. (It’s unlikely, but I’ve thought about it, and it doesn’t bother me as much as everything that might happen before it.) It’s the thought that this cancer just won’t go away.

I’m tired of not living life on my terms anymore. This makes me feel like a petulant child to say this—for who does really do whatever he or she wants? But I’m tired of having an asterisk on the end of everything that I do. (*If I can travel by then. *But I can’t be in the sun. *When I can possibly work full-time.) And I’m terrified of taking life back up again, just to have the lymphoma come back and reclaim its hold.

I especially feel terrible, because I see so many brave and inspiring people fighting this disease and other forms of cancer. I feel like I don’t have the strength sometimes.

Right now, I’m just going to tap into the reserves and prepare myself for the upcoming brutal week. I don’t need to worry about my scan months from now—I just need to focus on the closest horizon. I’ll find the strength I need when I need it.