May 16, 2013

Catching My Breath

Posted by Scott at 08:26 PM

I haven't written in weeks. I hope not to make it a habit, but the past few weeks have been hectic, chaotic, anxious, and just busy.

Michelle - A few weeks ago on April 23rd the CT scan results showed that the targeted medicine may have been working in that it slowed tumor growth, but it did not halt or shrink the malignancies. There was a 15-20% growth since we were on vacation in South Carolina. At this early stage, we'd like to do better.

Late last year we had some plans to go on this protocol using this drug, PM01183. But about a week or two before we were about to start, we found that the genetic markers of her tumors showed a strong match for a new targeted therapy involving Ruxolitinib. We went with that but had an understanding that we would return to this original protocol if Ruxolitinib shouldn't pan out. Because of the rules of the targeted medicine, we couldn't do them the other way around. The Ruxolitinib trial has rules about how many previous chemotherapies an enrolling patient could have.

So Michelle had a bit of a break from the targeted drug to detox and flush it, but she did the remaining screening tests required by the original protocol. She officially started the new regimen, which we affectionately call The Squishy Protocol, a week ago.

Aside from this, somewhere around 5-6 weeks ago, Michelle started to suffer headaches. Was it the medicine, stress, allergies from the high pollen? Perhaps a combination of the three? Over a week ago they started to subside in frequency and intensity, but the new treatment brought them back in intensity.

Because it's a new treatment, we've had a lot of visits to the hospital this past week for initial monitoring. Luckily we should get a bit of a break in frequency for the next two weeks. And after today's visit, hopefully we have some concrete plans for stopping the headaches.

Claire - In other news we're excited for Claire. The Junior/Senior Prom for Milford High School is this weekend. Claire is one of three girls on the court. I hope I can get a few photos this weekend.

Abby - Abby continues using her free time on tennis practice & games and with the high school band. Even tonight Michelle and Claire are at the high school to watch Abby and the band perform. I'm hanging at home with the boys.

The Twins - The twins are … well… the twins. Sometimes silly. Lovers of video games on the 3DS and the Wii. They are eager for summer to get here. Roughly six weeks to go.

Timothy - Timothy keeps on tinkering. He and I have worked on several small projects. He just finished another round of standardized NECAP testing. He's taking tomorrow off from school to visit doctors to check on his hearing and his spine. He and I are also excited because we recently ordered a Kobo Aura HD eBook reader.

Scott - Me? I've been busy providing a taxi service for Michelle, bringing her to and from MGH in downtown Boston. Each visit is at best about three hours in the car. I accompany her and consult with her oncologist. Because these visits involve a lot of what I call "hurry up and wait", I bring my work with me to do during the hours of idle time at MGH.

Last week as Michelle was finishing up with CCD, I was finishing my work with the RCIA team. We'll have a team dinner in a couple of weeks. I'm happy we had such a good class this year, but given all that's been going on, I'm also glad to have a bit more free time.

I've used a couple of tools these past couple of months to turn eBooks into primitive audio books. The key ingredients for me are Moon+ Reader Pro, which supports Android's text-to-speech engines and Ivona, a maker of high quality voices. Using them together I've listened to The Gargoyle Code, Walking With God, and hopefully soon Life of Christ. Life of Christ is significantly longer and takes a while to get through. I'm about half way there. Overall I'm happy with the technique and recommend it if the book you want isn't available as an audio book. While a great number of good fiction titles are available as audiobooks, many Catholic books are only now becoming eBooks, let alone audiobooks.

Because of my busy month, I took yesterday as a work from home day to catch up on a couple of things. I helped the wood pellet delivery guy put three new tons into storage. I also brought the Jetta in for service: swapping out the snow tires and a routine oil change. I also got to enjoy a lunch with Michelle at Cafe on the Oval.

I hope to get back to the regular practice of updates again. RCIA is over. The intense frequency of MGH visits should settle down. There were four this past week! I just need to get back into the habit of taking small breaks for writing.