Hello guests

I don't have anything new to report, but I wanted to say hi to everyone checking out the site.

There have been quite a few hits on this blog this week. While I hope that everyone finds the site at least a little helpful and hopeful, it makes me sad that the likely reason someone visits my site is that they or someone they love is dealing with Cutaneous T-Cell Lymphoma. This can be particularly hard for the loved ones, not knowing what to expect or how to be supportive. For people with CTCL and their loved ones, the most important thing is to be caring for yourself. Stress has a really negative impact on not only our psychological well being, but our physical well being. Care for yourself so that you are able to care for others.

To those who are newly on this journey, remember that it is a long journey, full of options, opportunities, and hope. I would love to hear about your story, either by comment below, email, or on your own blog. When I was first diagnosed, I had a hard time finding information from the patient's perspective, and most blogs hadn't been updated in more than 5 years. It gave me the feeling of being alone in the journey, which is certainly not the case. So I just wanted to say that I am here, if you have any questions, feel free to ask. You aren't alone in your journey.

Talking with colleagues

Last week the school I teach at went on a retreat. I always enjoy getting away, seeing people that I don't get to talk to all that much normally, and spending more time outdoors, or at least in rooms with windows.

One of the activities I was assisting with is led by a psychologist who counsels our high school students. She likes asking questions and in general I don't mind answering. Then the question of how my "skin thing" was doing.

At the time when I decided to tell my colleagues about it, I felt very worried and concerned for what might happen with my CTCL My skin had been getting progressively worse at an exponential rate. I was in that panicked space of worst case scenarios. I knew that I wanted and needed their support and telling them seemed like the right decision at the time. Because I still have my hair, people assume that I must really not have cancer. I try to explain about various treatments and how chemo would be a possible treatment down the road, but if I can treat with a less harsh method and get results, why would I jump to chemo.

The questions about my "skin thing", although well-meaning, always leave me feeling like a baby who's whining about a little diaper rash. I try to explain that overall I am at a best case scenario right now and that I realize how blessed I am that treatment worked, but it's starting to come back and I'm nervous about round 2.

Knowing now where I'm at, I'm not sure that I would make the same decision to tell everyone. I'm extremely thankful for the kind and supportive notes I received right away, and it definitely helped with my emotional response to know that I had that much support backing me, but sometimes I wish I could now erase their knowledge of my CTCL. That I could make it so that's not what they think about when they look at me.

Aaarrrrrggghhhhh

So. Setbacks are frustrating. But a part of life.

Last night while taking a shower I noticed a scaly patch of skin where my main bad spot had been previously. That area had been clear the last 15 months, but there's now a definite spot about the size of a quarter popping up there again. Given how bad it was previously and that it's in the same area, I'm more nervous about it than any other little spots that have popped up here and there.

It's frustrating. Mostly because I had really been enjoying being completely clear.

It was just a bug bite

A couple of weeks ago I got 2 mosquito bites on my neck. Knowing that scratching them would just make it worse I was very careful not to scratch them at all. Over the first week they seemed to be healing and going away. Then a couple days ago the area started getting red and sore feeling. I can barely feel the original bite site, but an area about the size of half a dollar has become really red and the lymph nodes right under the skin are swollen to the size of large grapes and really achy.

:-(

The way it is now is way worse than the original annoying nature of the bites.

10 month post treatment updates

I received a letter that Dr. Pandya at UT Southwestern will no longer be seeing patients with CTCL. I've been grateful to him for his care over the last few years and am nervous about seeing someone new. There will be another doctor (Dr. Heather Wickless) stepping up to take his place with the clinic, but as far as I can tell from researching her online, she doesn't have much CTCL experience. But everyone has to start somewhere, so I'll probably set up an appointment with her in June. I'll report thoughts once I meet with her.

Like the title says, I'm at 10 months without treatment. It's been going fairly well. I've had a few spots pop up here and there. There's one on my leg about the size of a blueberry that has been there for awhile now. It's not gotten any bigger so I'm not all that concerned, but I'll still be sure to show the new doctor. The end of the school year is always a stressful time, and stress definitely exacerbates my skin. We're also moving this summer and the sheer amount of stuff that we've accumulated from the various roommates is overwhelming. My wife's mom moved in with a 20' moving truck and moved out with a sedan. A large part of me wants to just pay someone to come take absolutely everything, but the rational part tells me that I need to go through it all and sell off what we can.

Anyways, not much else going on. As I've said before, no news is good news, so I probably won't be posting for awhile but feel free to contact me with questions or just to chat.

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.