Update

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.

#? Treatment

I've stopped counting treatment numbers. Today I was at a setting of 369. It lasted for 48 seconds, which is just starting to feel long. The largest spot on my lower back has been noticeably fading, but the spot on the side of my knee is still the same. I'm getting used to the sensitivity afterwards, but it's still no fun.

Surprisingly, the students have been better than the teachers at dealing with my diagnosis. I really appreciate my students and the humor, silliness, and positivity that they bring to my life. They never once say "how are you feeling" in that I'm so sorry voice. They treat me the same as they always have. Kids are great like that.

Therapies #5+6

On Wednesday I had my 5th therapy session, at a setting of 255 (32 seconds).
Today, Thursday, I had my 6th therapy session, at a setting of 279 (37 seconds).

I've been feeling sick today. I woke up with a huge headache and nauseous. I've had a slight fever all day I decided not to go to work today instead of pushing myself. I hope I feel better by tomorrow.

Time for another nap so that maybe we can go see Hunger Games tonight.

Phototherapy #5

I'm going to start looking at the numbers programmed on the phototherapy unit. Today it said 241. I don't know if that's just a number identifying me and it will be the same each time, or if it's somehow relating to the length of time I'm in there.
A normal person would probably just ask.
Me, I am going to pay attention and track the numbers, because I'm a scientist. And I like experiments, and its something to occupy my mind while I'm in there.
Just for notes, I now count slowly up to 20 during the treatment. They don't feel much longer than the original treatment, but apparently this is the second time I've been increased on time.

Itchiness over a larger part of my body is still frustrating, but its bearable.

Itching

I've only had some itching in the past 20 years since I got my first spot. In the last month, I've been getting more and more spots. In the last week my itching has gotten pretty bad. My stomach area has gotten really bad, both with the dry flaky skin and it being itchy. I've only completed 4 phototherapy sessions, so I can't really expect things to be getting better yet, but I'm wondering how long it will take, or if the treatments will work for me at all. My wife joked that now that I know about the MF, it has gone crazy. I am so grateful that she made me go see the doctor in January. At that point, the spots weren't that bad. Occasionally my main one get really flaky and it would hurt where too much skin came off, but I could put neosporin on it and be fine. I didn't really think it was necessary to see the doctor, just bad eczema. With how bad it is now, I'm really glad I went to the doctor back in January and could already be in treatment when it got this bad. The thing is, it could still be so much worse. I am still extremely fortunate with how I am right now. I will deal with the itching, the alternative isn't acceptable.

Telling People

I've been thinking a lot about the hows, wheres, and whens of telling people about my cancer. Of course these are different for each person I need to tell. When I was first diagnosed I felt like I wanted to tell everyone all at once, right away. I am a teacher and I wanted to tell all my coworkers, students, and their parents right away. I wanted to be on the other side where everyone knew, there were no secrets, and I could get their support immediately. I know that they'll all be supportive; I'm not too concerned about negative responses.

The first person I told was my dad mostly because he was the only person at my house when I got home. He was visiting from California just by chance (or not?). I talked to my wife next after my dad had taken my daughter out for awhile. My wife and I had a couple hours to just process and talk about it. That night I talked to my mom and daughter too. My daughter was pretty emotional. She didn't really understand, didn't know if that meant that I was suddenly going to die really soon. It took her a couple days to realize that I was still me and nothing had changed in an extreme way for me. Extended family were contacted by my parents, and I let the rest of the family and closer friends on facebook know through a private message there.

At work, I started by telling 3 people: the 1 teacher I work with most who I also co-coach with, the head of the school, and the assistant to the head of the school who arranges substitutes and approves sick leave. I knew they were the 3 who needed to know right away from a logistics standpoint. I had already had quite a few doctors appointments and they were wondering if everything was ok. At that point it was still so new that I was somewhat detached from my diagnosis. I was able to talk to them without getting emotional. The assistant suggested that I talk to the school psychologist, for myself, but also to help with how to tell students and others. I talked with her a couple days later. I did get a bit emotional as she asked about my support system and how I was handling it all. By the way, I do have an absolutely amazing support system, I am extremely lucky.

I have started posting on facebook about my diagnosis and treatments. It is the most effective way of keeping those that are interested updated on how things are going for me. I am careful to only friend people I actually know and am comfortable with on facebook, so I feel ok about posting info there.

I haven't told any students yet. First I need to tell the other teachers in my department. I don't know how I want to tell students, but I know that as soon as I tell some students, it will spread like quickfire to the whole school and community. I need to be careful about who I tell first. I have several options.

• I can talk to students in each of my classes when I see them, but then as soon as the first class hears, everyone else will hear from them. I really want to keep misinformation to a minimum. 
• I can ask all of my students to stay behind after a school assembly, then tell them all together.
• I can tell everyone during the assembly itself (I don't really want to do this, but it would be the easiest since I could give a powerpoint about the cancer itself. This has been done before with a teacher talking about his wife passing away from breast cancer and his family and how they were coping)

I am leaning most to the second option. All my students knowing first, but all together. I could send an email to their parents right afterwards, so that they would know also. I am anxious for everyone else to know. Patience is...hard. The tunnel is long, but there is light at the end.

Therapy #3

I suppose I'll stop posting about every therapy at some point, given that I'll have over 150 a year, but for now, while things keep changing, I'll keep posting.

Today felt like it went smoother. I had rearranged my schedule so that I went to therapy after work. While this means I have to drive out of Dallas during rush hour, it is still worth it. I remembered to pack my bag with soft clothes for afterwards, my own personal sunscreen for personal bits, and lip balm. SPF 4 probably won't do anything to help my lips, but I figure it can't hurt and maybe it will help my lips not be so chapped.

I'm in a race with myself with how fast I can get in and out. The first time was 30 minutes, second 15 minutes, third 10 minutes. I probably can't get much faster, especially since they will be increasing the times. I did an increase today and I'm slightly pink and very sensitive. If I heal by tomorrow I'll have them up it again for Friday's session.

Today wasn't quite as bad for feeling weak. I was able to climb stairs, slowly, but I did it. My schedule for the next two weeks is insane. I don't really have any spare time to breathe, so I'm just going to do my best to get through it. My chest still feels pretty congested and I occasionally have a lot of pain when I move certain ways. I've also been getting a lot of headaches. After reading the "Taking Time" ebook from the National Cancer Institute, I've learned about how much stress can cause worse symptoms than the cancer. I've been having headaches, exhaustion, and extreme hungry/not hungry periods. Today's definitely been a hunger day. I've been eating nonstop today, but never feel full and get hungry again fairly quickly. This could also be due to my skin needing the extra calories to help heal after the treatments.