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.

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.

Therapy #2

I had my second phototherapy session yesterday. They kept me at the same time since I had mild burning after my first one. I was still feeling a bit sensitive and burned after yesterdays session. Today I was fine though, so I'm going to have them increase the time for tomorrow's session.

I don't know if its related, but I have troubles with my contacts after my sessions. I wear the goggles, face shield, and close my eyes, but after both sessions they've felt weird. I've had headaches and pressure behind my eyes.

Tomorrow's session is after work, but on Friday I'm going in the middle of the day. I'm a little worried about being sensitive while I have to go back to work.

Note to self: bring bag with soft clothes, sunscreen, lipbalm, and liners to work

New clothes!

I went shopping today for the softest clothes I could find so that the burns won't be irritated by rough clothing. I was trying to find nice clothes that I could wear to work also, but was only minimally successful. I did find an awesome pair of pants. They were in the pajama area and so so soft. They're black and fairly nice looking, so I may try wearing them to work. I got some really soft tanktops also. I'm planning on layering them and forgoing a bra after treatments.

This week will be my first complete week of 3 treatments. I'm a little nervous, especially since I had to schedule two of the days back to back.

Day After First Phototherapy

It's now been 30ish hours since I had my first narrow band UVB phototherapy treatment. I've read about some people who have phototherapy in conjunction with a gel or lotion, but I'm just doing the phototherapy.
My shoulders and neck are still a little sensitive which is interesting because those are the only areas that I really have any tan at all.
My chest cold seems to have cleared up finally. I was waking up with a decent amount of pressure in my chest, but after taking a shower and hacking stuff up, I was fine for the rest of the day. It lasted about two weeks, but never got bad enough that I'd go to the doctor.

Stop #1 - First Phototherapy Treatment

I just had my first phototherapy treatment. Narrowband UVB to be exact. It lasted somewhere between 30-40 seconds. There are some things I was never told or explained ahead of time, so here's all my probably inappropriate details.

Things I was told ahead of time: 
1. It's like a tanning booth
2. It increases my chances of skin cancer
3. after a year of being in the clear, we could talk about decreasing or stopping the treatments.

Things I was told right before hand:
1. Because I don't have any bad areas on my face, I could wear a face shield (which is only a slightly yellow piece of plastic that sits several inches away from my face. (My face still got pink)
2. Genitals needed to be covered. (This provided difficulty, as I have bad spots completely surrounding my girly bits)
3. Nipples need sunscreen (I'll bring my own from now on).
4.  A lot of people slather lotion all over after they're done. (Again, bringing some from now on)
5. Some people prefer to wear the goggles with the face shield. (See my suggestions below).
6. A bit of burning is to be expected, but if real burns happen, let them know so they can adjust the cook time therapy time appropriately.
7. You want to make sure everything gets exposure all the same, so that an area that was protected for awhile doesn't suddenly start getting exposed when the dosage is higher, or worse burns can occur. I'm going to put my hair up so that my neck gets it all the same, especially in case I cut my hair in the future.

My experience:
I pulled my hair up in a pony tail  stripped down, tried to adjust the paper to cover my girly bits without covering any bad spots. Put on the face shield, pushed the button to let them know I was ready, hopped in the standing unit, pulled the door closed, put my hands on the upper bar, answered that I was ready and then....
WOW that's bright
WOW that gets hot quickly
I hope it doesn't get hotter
Oh crap, close your eyes
This is making me nervous
Will it get hotter?
It hasn't really gotten hotter than this, how long will this take?
I'll count seconds.
1

2

3

4
5
6
7
8
9
10
11
12
13
14
15
Oh the lights went off. That was quick. Was it really 40 seconds?
That means I can get out now. Is the metal cage surrounding the lights hot? There's not really anything else I can push on to open the door so I hope not. Nope, not hot. Open the doors, step out, feel really weird that there's a full length mirror and I'm naked. Get dressed quickly, but noticed that my skin was pretty sensitive.

My skin is pretty sensitive and it feels like I got a bit burned, but not red. My face is pinkest. All my skin still feels warm. The bra was a bad idea. Even an hour after taking it off, my shoulder has red lines from them.

Things I'll do next time:
1. Bring sunscreen (I'm going to sunscreen my face in addition to the nipples) and lotion for afterwards.
2. Make blacked out goggles to bring. (I'll still wear the face shield)
3. Bring my parking ticket into the office(they validate for phototherapy only)
4. Try to arrange all of my appointments for after classes so I can....
5. Bring comfy soft pajamas to change into afterwards

I think there was more than that but I've forgotten now. I'm so exhausted.
One hour drive time, 5 minute wait time, 10 minutes talking, 5 minutes preparing all for...40 seconds of therapy.

Next therapy is not till Tuesday so I get 4 days off which will be appreciated.

Life things

We got some banking things in order that have been long overdue today. It feels good to cross a couple things of the long spring break to-do list. 

I also have worked for several hours organizing my coupons. I am an avid couponer and am saddened that it took me so long to realize how awesome it is. We get a greater quantity and quality of items for far less money, which in our cash strapped state has helped. Today we took advantage of the CVS deal on Zhu Zhu pets and stocked up on a years worth of presents for our daughter, niece, and nephew ($515 value) all for $35. :-D 

I don't know if I am itchier recently or if I'm just noticing the itching more, but it's getting really annoying. I was supposed to hear from the doctors office about scheduling photo-therapy today, but I was so busy that I didn't notice they hadn't called till it was too late to call them. Tomorrow morning I'll do it. I really want to get started and have at least 2 treatments during spring break so I really know what it's going to be like and if it's reasonable to go right back to teaching afterwards. 

I'm also just anxious to start treatment, to take that step towards being better. I know it will be a long road, but it seems longer not having started down it yet. Even if they're baby steps, I'd like to have step foot onto the path of getting better. 

The Journey Begins Here

I was diagnosed with Mycosis Fungoides, a form of Cutaneous T-Cell Lymphoma on February 29, 2012. I decided to create a blog so that I could explore the emotions and issues surrounding my diagnosis, treatment, and life in general.

My story really begins in 1993. I have had eczema since birth, but for the most part it was mild and very manageable. Only rarely becoming even annoying. In 1993, I noticed a quarter sized circular red spot on my lower back. Around that same time I also had eczema around my stomach and upper legs. That summer I went to the swimming pool every day and would lay out to "tan". I am extremely pale and don't tan in the slightest, but I would lay out to dry off and relax. After a summer of laying out in the sun everyday, the eczema on my stomach and legs had disappeared. The spot on my back never did, but it was covered by my bathing suit.
I didn't think much of the spot for a couple years. By early 2000, the spot had grown to the size of a poker chip. It was just pinkish red and occasionally dry and peeling, but mostly not a big deal. By 2004 it was just smaller than a dollar bill. Over the years I'd had several family doctors look at it, a couple prescribed creams such as Elidel. It stung a whole lot and I couldn't stand using it longer than a week. No one ever recommended I have a dermatologist check it out. In the summer of 2011 it started growing at a faster rate and several other spots showed up. All of the new spots were between my shoulders and knees.
My wife asked me to see the doctor about it, but I put it off. Doctors had looked at it before and were never concerned. She finally called my mother and the two of them found a reputable dermatologist and made the appointment without telling me.
On January 30, 2012 I went to see Dr. Lisa Pruitt. She first did a skin scraping to test for fungus. It came back negative right away, so she took a biopsy. It had never even crossed my mind that a biopsy would be needed. I was a bit scared, but not really concerned. The doctor said she'd call in a week with the results of the biopsy and I scheduled a followup appointment for February 16th. After the biopsy, I went back to work. The biopsy spot was sore and the stitch was itchy. I was a bit emotional at the thought of having needed a biopsy. After the first day I wasn't as worried though. After the first week went by and I didn't hear anything from the doctor, I figured everything was fine, they would have called me if there was a problem.
On February 16th I went to my afternoon appointment. The doctor came in with paperwork and explained that some things came back suspicious from my biopsy, so the lab wanted to do more testing on it. The doctor had just gotten those results back which is why they didn't call earlier. The doctor said it came back as probable mycosis fungoides, which she explained was a form of cutaneous t-cell lymphoma. She said it wasn't definite, but couldn't be ruled out. She wanted me to go to a mycosis fungoides expert in Dallas to get a more accurate diagnosis. At this point I was extremely scared. I may not have known what mycosis fungoides meant, but I did know that lymphoma meant the "c" word. I tried to keep it together until I got home and I was mostly successful. When I got home, I told my dad who by pure chance was visiting from California. My daughter came home soon after so I had him take her out to the mall so my wife and I could have some quiet time to talk and start to process this curveball. Part of the difficulty was that the dermatologist didn't come out and say yes, you have this condition. I was confused about what my test results meant, there were numbers, some were positive, some were negative. Did this mean I only kinda had this condition? It took me a couple weeks to even think of googling the skin stain results. I found out that the negative for CD30 just meant it wasn't hodgkin's lymphoma. On February 29th, I went to see Dr. Amit Pandya at UT Southwestern. I got to don the oh so stylish fabric gown (a definite improvement over the paper easily ripped one at the dermatologist). After the resident took my history and check me over for all my spots, Dr. Pandya and a whole team of doctors came in. I laid down on the table and tried to maintain some dignity while they conducted a full body search for every possible spot. A new one was found under my arm.
He then explained that yes, I have stage 1a Mycosis Fungoides. He recommended light therapy which he was optimistic about since my skin is so pale and has responded to the sun light in the past.

I've done a bit of research about it all since then, realized that google image searches will just freak me out, and learned about the questions I should have been asking when I was too stunned from the diagnosis to think straight.

I am supposed to start Narrowband UVB treatment this week. Question #15 I should have asked, what are the side effects of the phototherapy?

I have an amazing family support system. I am extremely lucky that this was caught while I was still stage 1a. I feel very fortunate that my dermatologist didn't look at it and say it was eczema and not a big deal just like every other doctor had done. I am extremely happy that she did the biopsy. I am over the moon to have decent insurance. I am nervous about the treatment, side effects, burning, and if it will work of if I'll need chemo. I hate that every itch, ache, or pain panics me now.

Enough for now. Thank you for reading.