McClintock's and Those

Anna Scott runs through a local pumpkin patch with Rachelle, great with a "pumpkin" of her own. Stopping, ASM examines the multitude of pumpkins on their side, still attached to the vines. Turning back, she exclaims, "Mommy, the pumpkins have belly buttons!!"

Yesterday and Monday marked my second trip to Duke for my photopheresis treatments. Already, the trip routine is becoming familiar and making my medical condition more of a reality: I'm really going to a national cancer center for treatment. Sheez.

Last time, I listened to sports radio / music on the drive up and back. This time, I sought to redeem my 2 hours each way, so I purchased the Bible on CD. I had the salesman open and play a few minutes of several packs so as to be sure I wouldn't be annoyed by the narrator's voice. The dude was helpful and I finally settled on a NIV, non-dramatized version. On the way up, I listened to Hebrews thru Jude; On the way back, Joshua. Listening did make the trip go by faster, and I often found myself wanting to pause and hear parts again...It's difficult to meditate while driving, by the way. If nothing else, I'll be able to say with more confidence, "Hey, I think it says this somewhere in the New/Old Testament."

On Monday, my good friend Tim Conder (and here)came by for a visit. Tim is a long-time friend of Rachelle's from her Chapel Hill days and I was fortunate to "marry-into" that relationship and develop my own friendship with him. His hour with me was great, but surreal. Here I am hooked up to this machine, with an IV coming out my arm, (Warning - graphic imagery) and the clear tubes colored with my blood and white blood cells zipping around the various bags and "stages" of treatment; and we're having a conversation about our lives and shared cancer stories (Tim's mother-in-law is a Cancer Survivor).

Many people have asked me how my employer has been during this process. I've "told" my manager and the regional exec, but haven't yet shared my condition with my larger team. In any case, these managers have both been extremely supportive, telling me to do whatever I need to do to take care of myself. My workload comes in spurts, so it's hard to off-load tasks at the last minute (too much "tribal knowledge" to impart as I'm walking out the door), plus everyone is as busy as I am. So, I got a wireless card for my laptop and was able to work (one-handed) during treatment. The downside is that I had to work during treatment.

I did feel more tired after this treatment and felt a little achey, like you do at the onset of a cold. I took some iron supplements to help with the hemoglobin restoration (yes, I increased my fiber intake too. Thank you.), some Excedrin for my headache and took a hour nap. Today (Wednesday), I feel fine.

Am I seeing improvement yet? No, not yet. I'm still doing the Targretin ointment daily and have now had 4 photopheresis treatments (2 treatments per trip to Duke). Dr. Foss (Yale specialist) did opine that she was not surprised at the negative results from the most recent biopsy (see post below), that is difficult to diagnose my condition this early. So we're sticking with the treatment plan to see what happens.

What to pray for:
1) Effectiveness of the treatments.
2) Safety in travel to/fro Duke.
3) Rachelle, as she's only getting more pregnant while I'm being treated.
4) Absence of illnesses for all of us (flu, cold, etc) this season.

Thanks for your prayers and support.

Anna Scott debuts her singing talent at Westminster Presbyterian Church, Charlotte, N.C. The standing-room-only crowd was dazzled and amazed at her recitation of Genesis 1:1, followed by an interpretive dance rendition of, "He's Got the Whole World in His Hands."

3 minute video.

This week marked the first installment of photopheresis treatments at "Dook." My preconceptions consisted of me having one IV line into an arm (similar to how one donates blood, which I use to do) and sit for four hours. The actual experience was not too much different, except: a) the "stuck" arm was practically non- functional, meaning I couldn't use it to hold my book, or paper on which I was trying to write, etc. and b) I wasn't just left alone but constantly had nurses checking my vital signs, getting me bagels, etc. The worst part of the whole experience was when they removed the tape and pulled my arm hair. Ouch! Otherwise, I pretty much sat there for 4-5 hours on Monday and again on Tuesday.

So what about the negative biopsy results? Well, Dr. Horwitz wasn't around this week, but the best answer I got from nurse Lisa was that the CTCL diagnosis, in his opinion, is inconclusive. But, photopheresis has a low down-side risk and potentially high up-side (i.e. it can't hurt), so we're proceeding with it anyway. After 3 months of bi-weekly treatments, we'll re-evaluate, see if any progress is being made, likely take another biopsy and revise the treatment plan accordingly.

I definately have something going on with my skin. Is it CTCL? Drs. DeBuys, Limentani & Foss say "Yes." Dr. Horwitz says, "I don't know." Maybe we caught it early. Maybe it's something else. Regardless, we're being relatively pragmatic and proceeding with treatments.

Oh, I will be shaving my arm hair before the next installment.

p.s. ASM update: tonsils still in, and staph infected bug bite is gone and fully healed. Rachelle doing OK, but uncomfortable while sleeping.