What's Next?

This whole mess started exactly two years ago. We had just returned from Michigan, where Sandy had noticed some odd itchiness on the bottoms of her feet that she could not explain. Shortly after that--a year ago next week--we went to the beach with the Grandy's. It was there that the jaundice first alarmed us. Within a few days of that trip, and as a result of some intensive attention from our good friends and physicians at Hopkins, Hunter Young and Mark Sulkowski, Sandy was on an OR table getting her first ERCP. That resulted in the diagnosis of Primary Schlerosing Colangitis, PSC. The doctors were very concerned about the presence of cancer at that time, but could not prove it. That is when we started to learn just how elusive this cancer is.

Two years.

"What's next?" you ask. Sandy had blood drawn upon our return from Michigan yesterday, and we await those results. We expect that those labs will confirm that she is clear to resume chemo, which will probably start today. The dose will again be reduced, this time to a single 500mg pill, once each day. You can compare that to the original dosage of THREE x 500mg pills taken twice daily (total 3000mg) and see that there is quite a difference. She will likely take the single pill at night, so that the worst of the symptoms occur while she is asleep. Hopefully, Sandy will be able to tolerate this a little better now and life will be better.

The original plan for this round of chemo was to administer it daily, in three week cycles, for a period of four months. Under this scenario, Sandy would take the prescribed dosage each day for a period of two weeks, followed by one week off to complete each three week cycle. Then, take the pills again for another two weeks, take the third week off, and so on...for a period of four months. That would have completed the treatment by September, according to the original plan. The team of oncologists working with us is now discussing extending chemo through the end of November. No decision has been made on this yet, either by them or by us. This will be influenced by the next set of scans, of course. Those scans are scheduled for early September, so stay tuned.

One thing you learn through an experience like this is that oncology is not a precise science. Couple that with the fact that Sandy's case is so unusual and there just is not much data to rely on in this setting--the application of chemotherapy with cholangiocarcinoma patient who is post-transplant.

"Uncharted territory," is a phrase we have heard often.

This weekend, we head to the beach with the Grandy's--always a good time and the weather forecast looks fantastic. Low 80's, breezy- perfect beach weather. The girls are excited to spend time with their friends...and one last break before school starts!

Bay Harbor, MI

Bay Harbor, MI

Bay Harbor, MI

Hannah's swim of the harbor-- 4.5 miles (6 lengths x .75 mi each way) complete with escorts from her grandparents in the row boat, and Sandy and Haley on the paddleboat. I was in another rowboat performing as "Eminent Recorder."

Bay Harbor, MI

A Week Away

The last update was three weeks ago, when Sandy had just interrupted her chemotherapy and was starting to take HGH injections. Those shots are a bear. She could only tolerate two days in a row before they beat her up enough to land her in bed for the rest of the week. The good news is that they work—I injected her twice during the week of July 23rd, for a total of three that week. Her white blood cell count did rebound. Two more last week, and her WBC was back to almost “normal” before we left for vacation. We went to Michigan to visit with Dotto and Grandpa Bill (my parents) last week, and no shots were needed. During this time, Sandy was still not taking any oral chemotherapy, and was able to enjoy the vacation.

Last week was clearly the best she has felt in many months. Sandy exhibited more energy last week than I have seen from her since March 2006 when we went to Steamboat to ski. I think the weather there above the 45th parallel helps, too. While it was in the 90’s and even 100+ degrees (with very high humidity) in Baltimore, Bay Harbor (MI) was a cool, dry 80-85 degrees with nice breezes. How could you not enjoy that kind of weather? We spent most of our days on the beach, or in boats, and in the water.

Sandy sat comfortably on the beach and read three or four books last week…I am not exactly sure. Hannah read at least four, while Haley and I trailed with a measly one book apiece. Actually, I am about 80% of the way through the second book, “The Great Match Race,” by John Eisenberg. John is a neighbor of ours and author of several books, including this one and a book called “Native Dancer.” I’ll add some comments to the blog on both of these. They are terrific books that I have really enjoyed. I also read the book on the Duke Lacrosse case, “It’s Not About the Truth,” co-authored by the former Duke coach and a former editor of Sports Illustrated. If you have any interest in the case, or have ever had concern about being falsely accuse of a crime, then you must read this. If you disliked DA Mike Nifong before, you’ll hate him and a couple of other key characters who investigated and prosecuted this case.

Hannah did her annual “Bay Harbor swim” – three years ago that included a single length of the harbor. The following year, it was two lengths. 2006 was a bye, but this year, she swam SIX lengths @ ¾ of a mile each. That is 4.5 miles in a lake! What an accomplishment! To make it a little sweeter, Hannah bet her grandfather $25/lap that she could do it. He capped it at four laps, but she continued with the extra two just to make a point…and came home $100 richer.

I'll post some pics from the week shortly.