It's been awhile since I posted. To update: I have continued the nbUVB phototherapy. I am currently going every other week and I spend roughly 1 minute in the lightbox. I still get itchy afterwards and am pretty tired, but I'm dealing.
All my spots except the main one have disappeared. The main one one my lower back has lightened so that you almost can't see it.
Two weeks ago I got a flu shot (intramuscular) and the pneumonia shot. While the doctor and others say that didn't contribute to me getting sick, less than 24 hours later I was extremely sick. My fever was up to 102, I was throwing up nonstop and couldn't even keep down little water. I was sick for 3 days, then the doctor prescribed anti-nausea meds that worked really well. Two weeks later, I'm still having small bouts of nausea and dizziness, but they don't last long and I'm feeling really good.
While I went through a period of feeling extremely week at the end of the summer, I'm feeling stronger than I have in awhile. I've taken to jogging up the flight of stairs to my office like I used to.
This weekend, Kelly and I went to our first Lymphoma Research Foundation Patient Education Conference. It was in Houston, so it was quite the drive, but very worth it. Meeting other people with this cancer was very humbling. I've been very blessed in my journey so far. Meeting others who haven't been so fortunate helped put my experience in perspective. The effect of the conference was very different for me vs. Kelly. I walked away feeling fortunate and optimistic. I was diagnosed early and perhaps because of my insanely light skin, phototherapy has worked really well. For Kelly, it seemed more like a look at what I'll be in store for in the future. It made her more worried and upset and dissatisfied that my treatments have been lowered and that I'm not doing any type of chemo or other more aggressive treatments.
The next conference we'll go to is in Dallas next April. I really hope they take our suggestions to hold separate patient and caregiver breakout sessions. I got to talk to one other patient without our caregivers there. It was good to be real and honest, but not fatalistic. I know that Kelly would benefit from talking to other caregivers. She worries too much and wants to plan for the worst.
At the conference it was discussed how stress can have a very real, visual effect on this type of cancer. I truly believe this. In college, which was extremely stressful at times primarily due to the isolation I felt, my main spot was at its worse. I now know it had progressed to the plaque stage, was very painful, and a lot of skin peeled off. After meeting Kelly, my stress level went way down. That and the fact that she made me lotion consistently meant that the plaque went down, leaving a standard patch. A second major point of stress in my life was last fall. We moved, changed jobs, couldn't rent our house out, and couldn't pay bills. I felt a tremendous amount of stress, and as a result, I got patch spots pop up all over my stomach, butt, thighs, and under my breasts. The increase in spots is what prompted Kelly to make me go to the dermatologist who immediately took a biopsy. While getting the diagnosis was stressful at first ("I'm too young for cancer, how can this be happening to me?"), after the initial shock wore off I was so relieved to have a diagnosis. I wasn't quite sure I believed it, because doctors have diagnosed me before, but I was hopeful. Once my phototherapy started and all my new, lighter spots went away really quickly, I started believing the diagnosis.
Since then, I have had a very relaxed, zen stance on my cancer. It is what it is and worrying or stressing won't make it any better, in fact it will make it worse. In all matters I try not to let myself get too stressed out. Kelly frequently believes that this means I'm not taking it seriously, but that's not true. First, I see no reason to panic before its time, I'm doing well now, why should I worry? Second, I've done a whole lot of research about it and understand what the possibilities are. In almost all things I tend to be an outlier. I choose to believe I'll be an outlier in that I'll go into remission and not have any other issues as long as I stay vigilant.
My next appointment with the doctor is right after Thanksgiving. We'll see what he has to say, but I'm still optimistic.
