Good news

As a teacher, May is an extremely hectic month. In addition there were a lot of other events, issues, and stressors that happened at the same time. This all culminating in me forgetting to go to treatment for 3 weeks. Despite missing treatments for awhile, my skin was still completely clear. In the 4th week of no treatment, I had an appointment with Dr. Pandya. He said that since I'd been clear while off treatment I can go ahead and discontinue the nbUVB treatments all together. :-D I can't express how happy this made me. He also said I didn't have to come back and see him unless some spots showed up again. So for now I am 100% clear with no evidence of disease or symptoms.  

While the word remission does not get used with CTCL unless a stem cell transplant has been done, it still feels really good to not have any doctor's or treatment appointments in the foreseeable future. Dr. Pandya says about 20% of patients who get clear can stay clear without ever coming back to see him. 

I will likely discontinue posting unless something happens again. So if you're reading this, no news is good news from here on out. 

It has been an emotional journey for me. One I am strangely grateful for. Cancer is the ultimate prioritizor and I am a stronger, less stressed, more zen person than I was before. 

Please feel free to comment or message me with questions. I will still receive them.

I wish everyone the best of luck on their journey. 

MD Anderson Update

My visit to MD Anderson was very educational. It is so different from my regular doctor/hospital UT-Southwestern. MD Anderson seems to have efficient patient care down to a science. Dr. Duvic and her team were very thorough and nice, but I doubt I would go back.

I had to pay $1040 before I was even seen, even with pretty good insurance. While I was there, I had a 10 minute visit with Dr. Duvic, 10 minutes with the intern, and they asked to do routine bloodwork, and it had been awhile so of course I said yes. Whatever was leftover from my "deposit" was supposed to be refundable. I called up a couple weeks later to ask how much of my "deposit" I could get back. The financial coordinator informed me that even with my $1000 deposit, even with the discount that having insurance provides, even with the insurance paying their part, I still owed $500 more. For a regular doctor visit, and some routine bloodwork. I can't even imagine what they charge to get anything actually done there. They never sent me an itemized bill, so I need to call and ask for that.

So that leaves a negative feeling about my visit. Had I known, I never would have gone. I am happy with Dr. Pandya's care, the opportunity to go see Dr. Duvic was there, so I took it. But I never imagined that a regular doctors visit would cost $1500 to me plus whatever the insurance paid.

Good news/ Bad news: The spots above my eye and cheek that had been there for 2 months went away a couple days before my Dr. Duvic appointment so she didn't get to see them and they have been clear since then.

Around the middle of April my knees started getting pretty red and I've noticed some other feint spots around my stomach and chest area. I've been using Clobetasol and decreased Narrowband UVB to every other week. So far I haven't got a huge outcropping from decreasing the NB-UVB which is good since last time I decreased to every other week, I did get spots cropping up. Hopefully I can keep at this level or stop all together by this summer. It's such a hassle to fit in my schedule and deal with rush hour Dallas traffic most of the time. It could be tons worse though.

MD Anderson

My one year biopsiversary was last week. In some ways the year has flown by. In other ways, it's crawled slowly by. I need to send the thank you card to my dermatologist who did the biopsy in the first place. I've been very fortunate being diagnosed so early. I am eternally grateful to not have gotten horribly bad before figuring out what was going on.

My mom sent me an awesome biopsiversary gift. An Origami Owl necklace with symbols of me, my family, and their love in it. :-)

My thighs have been extremely itchy lately. No spots showing up, but the texture of my skin feels weird. I'm still trying to get over this sinus infection that's been going on for 3 weeks now. I went to the doctor and got antibiotics, but I'm still suffering.

Next Monday I'm going to go down to MD Anderson for a 2nd opinion from Dr. Duvic. I'm a bit nervous and a lot curious about what she's going to say. I met her at a CTCL informational session last year but didn't really get a chance to talk to her then.

Time for a second opinion

On Wednesday night I went to a Meet the Doctor talk with Dr. Jason Westin from MD Anderson in Houston. It started out with a dinner, 7 patients and the doctor sitting around a regular dinner table. Eating, asking questions, sharing our own experiences. This particular event was for Lymphomas in general, so most of it didn't apply to me, but nonetheless, it was a good experience.

The things I took away were that while it's not necessary to do scans frequently, the fact that I haven't had a single CT or PET scan is something that needs to be rectified. I also learned how rare even within the Lymphoma group Cutaneous T-Cell is. I listened to a long list of various treatments that my doctors never discussed with me.

I have a new spot above my eyebrow. It's small, but with the 3 others that have popped up on my nose and legs, its not the direction I want things headed in. Despite getting more Narrowband UVB treatments, the spots are still coming. I want to move to a more aggressive form of treatment before allowing more spots to pop up. So I'm trying to set up an appointment with Dr. Duvic at MD Anderson. I really hope she doesn't look at my spots, say "you're fine", and then recommend not doing anything till its really bad. I recognize that compared to my worst, I'm doing really well and clear except for a few small spots. I still get bouts of itching that are insane. I hate this time of year. I'm glad most of the holidays are over, the stress doesn't help things.

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.