Disease Diary (Part 6)

What we originally anticipated to be a 5K has now turned into a 100-mile ultramarathon. When last we spoke, we were waiting for the results of the latest PET scans. They were actually good: the tumors were significantly decreased and their cancerous activity decreased as well — almost a remission but not quite.

Continuing on our winding path, WineGuy’s surgeon removed the surgical drain he’d implanted in WG’s leg months before to aid in the drainage of dead tumor and other yuck from the last surgical incision. The drain had been in for months and left a pretty large wound in the top of WG’s leg. As I changed the dressing daily, I noticed the drainage changed color from clear to black and foul-smelling. We rushed right into the surgeon, who sent us on to the infectious disease doctor and for a wound-care consult. The ID doctor cultured the wound and found all kinds of nasty bacteria, so she sent WG for IV antibiotics. Since the beginning of April 2014, WG has been going to the local outpatient infusion center for daily IV antibiotics. The drugs seem to be working because the latest cultures were clean.

WG’s initial wound-care consultation was a harrowing experience. I sat in the room with him while the team probed the open wound in his leg. WG howled in pain and gritted his teeth through all the poking and prodding. After 10 days of daily wound-care, including visits from a dorky home health nurse, the new wound-care doctor changed the schedule to 3 times a week. Wound-care reports that there is active healing going on, and things look good.

The point of my tangent on wound care is that the oncologists will not resume chemotherapy while WG has an open wound. So, we’re in a holding pattern again … sort of. About 2 weeks ago, WG noticed significantly decreased vision in both eyes. I got very worried and rushed him in to see the ophthalmologist. WG has cataracts in both eyes. It is likely that the chemotherapy and/or the radiation accelerated the growth of cataracts. What to do?

That brings me to this morning. I am presently sitting in an ambulatory surgery center while WG has his left cataract removed. You can’t have cataract surgery while undergoing chemotherapy. So, while he’s on a forced hiatus from the chemo cocktail, WG will have two cataract surgeries over the next two weeks, in addition to daily IV antibiotics and 3x/week wound care. And, I am still the only driver in the house. Boy, am I tired.

In the meantime, the oncologist wanted us to get approval to start another experimental chemotherapy drug, Imbruvica (ibrutinib), made by Johnson & Johnson. In typical fashion, Florida Blue health insurance denied coverage, stating that WG does not fall within specified parameters. So, we applied to J&J’s Foundation to supply the drug via compassionate use, and the Foundation approved the application! We just received the first bottle of these oral chemo pills from J&J’s affiliated online pharmacy.

As soon as WG’s leg is healed, he can start back on chemotherapy, both orally and intravenously. The oncologists at Mass General have requested WG go through another two rounds of the latest IV chemo cocktail before they will accept him for a bone marrow transplant.

Time-wise, that will keep us in The Zone through May 2014. We’ll be home for me to take Moose to Atlanta this weekend to audition for Jeopardy!; to celebrate Wild Thing’s 15th birthday and the acquisition of his learner’s permit; to hopefully attend Wizard’s graduation from high school.

I’ve learned to plan what I can and roll with the rest of it.

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