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Wednesday, August 27, 2014


My apologies for taking so long to update this blog.  My excuse is that a lot has been happening lately.  Along with our (so far unsuccessful) search for a new house, we have had the pleasure of being fully occupied by family visits for the past couple of weeks.

Lobster, oyster, and steamer dinner
First, Brian, Pam and Logan came up from New Jersey on August 13 and stayed through the weekend.  Then Holly and Ryan came in from San Francisco and arrived here that Sunday.  Holly and Ryan stayed all last week, while Brian, Pam, and Logan came back again this past weekend.  Jeff and Christine were here often during that time, so it was quite a family get together.  On Sunday we had a lobster feast, with oysters on the half shell and steamers.  Yummy!  Sadly, Ryan had to go back Monday, Brian and Pam are headed back today, and Holly leaves tomorrow.

During their visit, we used the boat often, making three trips down the Merrimack to Newburyport.  Monday was a great day!  After a boat ride to Newburyport for lunch, we got out the kayaks, went swimming in the river (present company excepted), and did knee boarding until it got dark.  Brian, Christine, Jeff, and Holly all tried it and did well, but Holly was the star performer, getting up on her knees on the board like a pro.  I just tried to steer the boat and keep from hitting anything.

We are making the most of our last summer here.  Damn, I'm going to miss this place.

Yesterday, I drove Gretchen to the orthopaedist to check on her foot.  The X-rays showed it is healing nicely!  The doctor said she should continue to use the boot for next 7-10 days and then go to gym shoes and walk on it carefully.  She goes back again in 3 weeks.  Hopefully, she will be able to return to mostly normal activities by then.

For the past couple of years, I have been communicating with a fellow MM patient from Buffalo, Steve, whom I met through my blog.  Gretchen and I had lunch with him in Buffalo when we went to Niagara Falls.  He was in Boston yesterday for a consultation with Dr. Richardson about joining a clinical trial using the experimental drug, ibrutinib, along with dexamethasone.  Ibrutinib was recently approved by the FDA for treating leukemia, and they are now cross testing it for MM.  Paul Richardson is coordinating the Phase II clinical trial at the Farber (Protocol PCYC-1111-CA).  Fortunately,  Steve was accepted into the trial.  We met in Boston for lunch after his appointment and had a delightful visit.  Steve is a very bright fellow who has done extensive research on MM and has taken an active role in his treatment.  He has often gone down unorthodox paths for his own treatment, and so far, it has served him well.  It has been seven years since his diagnosis, so he must be doing something right!  I expect we will see each other more often in the coming months, since he will be making frequent trips to the Farber for this trial.

I'm still feeling good.  I go back to the Farber on Tuesday for my monthly checkup and Zometa infusion.  I'm looking forward to reducing the frequency of these infusions to once every two to three months.  We'll see.

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