McClintock's and Those

Quick update: The latest biopsy (see below) came back negative, but I will still begin photopheresis treatments at Duke on Monday. The negative test results does not mean that I don't have CTCL...it could be a "false negative" result. Regardless, Dr. Horwitz at Duke would still like to proceed with the treatments given my other symptoms.

I'm ready. Let's go. I'll start this Monday at 1:00 pm, followed by a second treatment on Tuesday at 7:00 am.

Thanks for everyone's continued prayers.

Today marks my and Rachelle's 6-year anniversary. Time flies when you're having fun!

The latest round of hurry-up-and-wait came last week with a call from Duke saying their pathologist did not concur with the Charlotte and Yale pathologists' CTCL diagnosis, stating that the biopsy was not conclusive. They wanted a second biopsy to run a specific test to positively confirm CTCL. I knew that the first biopsy was inconclusive, but reasoned that subsequent bloodwork, CT scans, and opinions of Charlotte and Yale oncologists would have sufficed. Silly me.

So yesterday (Wednesday, Sept 21), I drove to Duke to donate 2 more 4mm x 4mm plugs of skin. The test to be run is a T-cell specific test and will take about a week. A positive test result will indicate that I do have CTCL. A negative test result means nothing, i.e. it could be a false negative, and would throw us into that realm of uncertainty.

A significant part of me hopes that it is positive, so we can know the beast in front of me and deal with it. I do not have the expectation that I don't have lymphoma (the rash still persists, for instance), but am curious as to what the doctors may say if the test is negative. Do we proceed with the treatments given the relatively inconsequential side effects, assuming a false negative result? What else could it be? Etc., etc.?

So, we wait. Again.

This latest pathology report should be back the middle of next week. I have tentatively scheduled my first photopheresis visit for Monday, October 3, which will be canceled if the test is negative but is at least on the calendar.

ASM's infection is officially Methacillian Resistant Staphylococcus aureus (MRSA), which is resistant to most (all) forms of antibiotics. It can be quite serious. The only way to get it out was how we did it - a shot of whiskey and a sharp knife (OK, maybe we used a hospital and lots of doctors...we do have insurance after all).

Anyway, ASM is A-OK. She was a little funny when they gave her the "Knock out" drug, which made her act 3 sheets to the wind before she had to leave us for the OR. I hope I never see her in this condition as a teenager, but I'll not love her less.

The surgery took less than 20 minutes. Recovery took about 3 hours, enough for 2 bags of Teddy Grahams, a cherry popsicle and 2 purple popsicles. We'll keep her on Tylenol and not let her walk up/down the stairs by herself until tomorrow. She'll be able to go back to daycare on Monday.

Thanks for your prayers. Rachelle and I are doing OK too (though R has had a headache all day).

Here's a brief update regarding Anna Scott. You recall that ASM was to have her tonsils out next week (9/21). This past weekend, she got an insect bite of some kind that got really nasty. Rachelle took her to the weekend clinic (I was out of town being spiritual at the Westminster's Men's Retreat) on Saturday, then again on Sunday for a follow-up. They said we needed to have a pediatric surgeon look at it because it may need to be lanced. We said, "Lanced?!?!?! Surgeon?!?"

On Monday, we saw the surgeon. Monday was also Rachelle's big Golf Tournament for the Barnabas Center. She was already busy, now she (we - I dutifully gave up playing golf) had a surgeon to see. He advised to wait a few days to see if antibiotics would clear it (they didnt') and for the culture/lab work to return (staph infection), so today (Thursday), we're going in to have him cut it out. ASM will be sedated for about 30 minutes.

Where did God show up in this? Well, we mentioned to the surgeon that ASM's tonsils were to come out. He said we could do both procedures at the same time, but needed to work with a doc who could operate at the hospital downtown. So with a quick flip of his cellphone, he got us an instantaneous appointment with an impossible-to-see Pediatric ENT, who opined that a) the tonsils aren't that bad and can stay and b) that the risks of taking tonsils on a under-three year old and under 30 pounds outweights the benefits...something the first ENT didn't tell us and at whom we became quite incensed.

So God protected us and reminded us that He is God and we're not...even through staph infections. The procedure starts in about 90 minutes (11:30 am EST). Your prayers are appreciated.

Rachelle and I successfully completed another consultation yesterday at Duke's University Medical Center with Dr. Mitchell Horwitz, who is a part of their Cellular Therapy department (no, it's not for folks who overuse their cellular telephones. Think Stem Cell Transplants).

I've been feeling anxious to begin my treatment regimen after visiting Dr. Foss at Yale. We had discussed several options and had concluded on topical Targretin and Photopheresis (see other posts below for details on these treatments). So when Dr. Horwitz wanted to "consult" with me, I just wanted him to hook me up to the bloody machine and get this treatment started. I can't get better until I get treated!

But then we met with Dr. Horwitz.

People who normally see him are cancer patients in dire straights. Stem cell transplants are often last resorts, are complicated procedures and quite risky. Those transplants essentially discard your old immune system, which failed to stop the spread of cancer, and replace it with someone else's. Photopheresis is a complementary treatment with stem cell transplants. To be clear, I am not having a stem cell transplant, only photophereis.

Sidebar: As an aside here, if you give blood to the Red Cross, they often now ask if you will allow your blood to be tested and registered in the National Bone Marrow registry, which provides matches for patients who see Dr. H. If you don't give blood, think about it.

So our consultation involved 1) the Patient coordinator (think paperwork), 2) the Social Worker (counselor and can help with physical needs, such as housing, if needed), 3) the Duke Fellow, 4) Dr. Horwitz and 5) Nurse Lisa. The process was fairly efficient, with not a lot of downtime between conversations, but it still took 3+ hours.

However, after seeing the really sick people in this unit, I understand why each of the people we met with are important and how this "team" was compiled to holistically care for the patient (albeit w/o a spiritual dynamic). Indeed, I didn't feel rushed. Dr. H didn't just zip in and out...he actually gave us a tour of the facility! I better understand what is happening and why. And I was reminded of God's mercy in that my CTCL was caught early and is treatable.

So what happens now? I immediately start applying the Targretin daily. The Photopheresis will begin in 2-4 weeks (either the week before ASM's tonsilectomy, which is on Sept 21, or the week after). The treatments will be done at Duke (they're the closest ones with the "machine") twice a month for 2 days. The treatments take about 4 hours each. After 3 months of Targretin plus Photopheresis, I will (likely) travel back to Yale for evaluation. If progress is being made, then I'll continue treatments. If not, we evaluate other options, which are still many.

Please pray for:
1) my CTCL responds to the treatments, that it goes into full remission.
2) continued strength and wisdom as each member of my family has health concerns - CTCL, Rachelle's pregnancy (this is a good thing, of course), ASM's tonsilectomy.

God has been faithful to us and continues to shower us with blessings. In fact, just this morning I received a call from my insurance company. "Oh no," I thought. But they wanted to tell me of that my travel and lodging to Duke is covered. Ha.