I want to rip my face off.

Whenever I get out of the shower, I'm always pretty pink (isn't everyone?) Yesterday I noticed that an hour or so after my shower, my face was still pretty pink. It seemed to be really concentrated on the right half of my forehead and both my cheeks. I didn't worry about it much, figuring it would go away. Today the same thing happened, but those areas now are getting thicker, rougher, and are extremely itchy. I've also had two really small spots around my eye for about 2 months. They're right at the edge where the goggles block.

Since its Friday, I'll wait and see how it does over the weekend. I suppose I'll have to call Pandya if it gets much worse. I really hope this doesn't end up being aggressive on my face.

I had a NBUVB treatment this morning. I was feeling extremely nauseous, tired, and sensitive afterwards. I guess I'm still getting used to the increase in treatments again.

Keep on keepin on...

Narrowband UVB

My experience of NBUVB treatment:

I check in, get a sticker for the parking ticket, and have a seat. Usually I wait 2-3 minutes before getting called back. The tech asks how I'm doing and makes sure I didn't burn last time. If I did, they'll lower the dosage. I always use room #5 and am currently at a dose of 490 milliJoules, once a week. When I first started treatment I was at 300 mJ 3x a week, my highest dose was 750 mJ 3x a week. This corresponds to treatment times of 0.5 - 1.5 minutes. Considering that it takes an hour total for me to leave the house, get treatment, and get back home it feels a little silly that all that is for (currently) one minute of treatment.

After going into room #5, I strip down, protect my ....(eh hm, down yonder region) with the blue piece of paper provided, sunscreen my nipples, apply SPF 45 lipbalm, put mineral oil on any spots I see, pull my hair up in a bun so my neck gets light, put on goggles, check to make sure I did everything I was supposed to, press the call button, hop into the standup tanning bed, answer that I'm ready, the tech starts the treatment. During my first treatments I wore the face shield, but then my skin started getting darker (and by dark I mean the 2 shades darker than snow and nowhere near pale yet) than my face, so I stopped wearing it. I do wear goggles, but am starting to notice that I have "goggle eyes", so my undereye area is pretty pale compared to my face. I still figure that's better than my whole face looking deathly pale. I keep my eyes closed during treatment, but it's still really bright. At first the heat scared me and felt uncomfortable but now its actually comfortable because I'm cold by the time I get in there so it's nice to feel warm. During my first treatments I would count...one...two....three...four...five... It was comforting to know approximately how much time was left. I don't know when I stopped counting, but I have. I guess I've gotten really good at knowing when one minute is up. I follow my doctors suggestion to turn around and make sure everywhere is getting light like a roasting turkey. When the lights turn off, I wipe off the sunscreen and mineral oil, get dressed, and leave.

For me, my skin gets really sensitive for about 2 days after. I'm pretty itchy and my stomach tends to get pretty pink. I've really burned a couple times. Last week my left side only burned. Several months ago I forgot to mention the antibiotics I was on and got really badly burned all over. Even after regular treatments my skin tends to feel warm for the rest of the day. Certain clothes are more irritating, so after my first treatments, I went out and got soft, slinky clothes to wear post treatment. I've gotten more used to the irritation (don't we all learn to cope with itching and irritation from patches and plaques?), so I don't worry as much about the clothes I wear afterwards.

It's just a minor setback.

This is always a stressful time of year for everyone. I've been particularly stressed lately and it has shown on my skin. Several new spots popped up on my legs and stomach. I had a regularly scheduled appointment with my doctor on Wednesday and was glad for the chance to show him the new spots. He believes they're the result of going from once a week NBUVB to every other week; it may have been too much of a reduction. I'll be going once a week again and hopefully that will clear up the new spots. He still doesn't believe I need to use Targretin or any other topical gels so that's good news.

The new spots aren't large enough to be really concerning, its just not the direction I want to be heading in. My oldest, largest spot has almost completely faded, but its still there, slightly pink, and hasn't changed at all in the last 6 months or so. I'm trying to be happy with where I'm at, I know I am far luckier than most with this disease.

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.