On Treatments and Loss

The schedule questions finally got resolved with a couple of phone calls on Tuesday, 7/6. Julie, the Social Worker in radiation oncology, called me mid-morning to say that Hope Lodge had a room for me starting Wednesday, 7/7, and had Dr. V's office called me? If not she would call them, verify the starting date, and call me back. As they hadn't called yet, that sounded the best option to me. She called me back about half an hour later with the news that I was to undergo my dry run on Wednesday, immediately followed by the first treatment, and that I was confirmed at Hope Lodge through 7/21.

I called Saint H and we hustled to make arrangements for furry childcare, and all the usual "leaving-town-for-3-days-with-less-than-24-hours'-notice" tasks... It's wonderful to have a known address for the duration, as we can leave things in place when we head back home on weekends to replenish clothing.

I haven't figured out whether I'm going to see near-immediate benefit, but I do know that my back pain has diminished somewhat. I'll take that, I think.

We received word that the second founding member of the Renal Cell Networking Group, John Gillivan, had passed away this morning. His brain mets came back and he lasted only a few days in ICU at the James. John and his caregiver, wife Susan, were instrumental in my being here still. When I first joined the group, I was trying to figure out what next course of action should be (remember this was in 2004). I had almost settled on starting with a clinical trial when they pointed out that one had to try and fail at high dose IL-2 in order to be eligible for most clinical trials. If one chose to start with some other therapy, one would be disqualified for most drug trials and other medications. Luckily I listened to them, suffered through high-dose IL-2, and then when that failed me I moved onto trials and other drugs; "the rest is history" as they say. I'd have missed buying the farm, building the house, refocusing my life on what's important. This process of postponing a bad outcome has taught me what's precious. I'd not have missed these lessons for the world.

Next Step (Date Unknown)

Today Saint H and I met with Dr. V of the radiation oncology team at Cleveland Clinic. He reviewed my scans and my medical history and has agreed to take me on as a patient, whoopee! He felt that I'm in good physical condition and "blooming" health, except for that little cancer problem, and that I'm a very good candidate for this treatment.

We're waiting into early next week to find out what kind of schedule we're looking at, but he wants to begin sometime next week. As he described the procedure, it's something like what was done for gamma knife, but we're looking for "gentle destruction" (his term) because lung tissue is so much more delicate than brain tissue. There are the usual times set up for mapping the lesion, and plotting the radiation plan, then I'll be scheduled for 10 sessions of radiation, 15 minutes each. In fact, I'll be getting radiation for as long as the gamma knife procedure took, just cautiously administered over 10 business days! There will be somewhat less concern over the precision aiming, though we'll be locking onto the target with what are known as "tattoos" resembling small dark moles on my chest. I suggested to him the concept of registration marks for printers, and he agreed with that. Potential side effects? I may develop some "sunburn" or darkening of the skin surface, and I may develop pneumonitis, irritation of the lung tissue resulting in coughing and shortness of breath. I don't cough now, and have only had shortness of breath when I exert myself on very, very warm, humid days, so perhaps it will take longer to see that develop. And, because the esophagus is so close to the radiation site for me, I may have some inflammation of the esophagus before this is over. Fortunately these are all controllable. This goes beyond palliative treatment; he expects to see the lesion completely destroyed, which will leave it to me and Dr. G to focus on treating the remaining lung lesions.

For the moment we don't know the schedule, because Dr. V has to coordinate several schedules - his own and the oncology team's, Dr. G's, and that of the American Cancer Society's Hope Lodge, Cleveland. Hope Lodge provides housing at no charge for cancer patients and their families when on extended stays in a distant city for treatment; with a 2-1/2 hour drive one way from home to Cleveland Clinic, I certainly qualify for the service. As you can see in this virtual tour, the facility is lovely.

The "no charge" option is becoming vital, though I can for the moment afford the Cleveland Clinic rate at the Doubletree Downtown, Lakeside ($89.00/night for rooms that normally rent for as much as $299.00/night). However, doing restaurant meals on top of about $1000 in hotel costs is getting outside my comfort zone financially. If I can take advantage of the Hope Lodge program and test out the lovely kitchens, I'll be pretty happy. We picked up a flyer on the surrounding area; lots to do to keep myself busy outside of my "15-minute day". Friend M can pursue some grant research that she needs to do, friend B has offered to be my keeper too, so Saint H won't have to be there the whole time.

The sooner I know the schedule and how it affects when I can start on Afinitor (and from that, what my schedule will be with Dr. G), the better I'll feel. Guess I'll start packing books and knitting now so I can be ready to go at a moment's notice. Some things are much more important than clothes ...