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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.

Monday, August 4, 2014

Taste of tomato

I had my monthly visit to the Farber today and thankfully, all is still well.  I'm very grateful as I enter my third year of maintenance therapy on this clinical trial.  Except for continued improvement of my hematocrit from the iron pills I'm taking, there is not much new to report, so instead of dwelling on that, I want to talk about tomatoes.

The other day, I read an article on CNN about "the best sandwich in the universe".  The author was touting a tomato and mayonnaise sandwich on white bread as being the perfect sandwich.  Here is a link to the article:  tomato-mayo-sandwich-eatocracy.  Now I love both tomatoes and mayonnaise, and fresh tomatoes have just come into season in this area.  I decided to take the plunge.  I bought a loaf of regular white bread (ugh!) and bought some fresh tomatoes from the local farm stand.  I slavered up the Hellman's mayo and sliced tomatoes on the bread, let it soak in for a minute, and took a bite.  I have to say it was pretty good.  However, Nirvana it wasn't.

That made me think about when a tomato was Nirvana for me.  I was probably 12 or 13 years old, standing in the vegetable garden of my grandmother's farm in upstate New York.  I distinctly remember plucking a large ripe tomato off the vine and standing there devouring it, with the succulent juice and seeds running down my face and dripping on the ground.  That was the best tomato I have ever eaten!  Some of that has to do with the fact that my taste buds have deteriorated over the years.  Some of it may also have to do with the glorification of that memory as the years have past.  In any event, my mind still recalls exactly how delicious that one tomato was.  I have never tasted another one as good since.

The same goes for corn on the cob.  I love fresh corn on the cob.  They are in season now.  Yesterday, I devoured 3 ears, and yes, they were very good.  However nothing will compare to my memory of the corn from the farm.  Again, I was young, but I clearly remember that just before dinner was served, we would go out and strip ears of corn from the stalks, rush them back to the house, shuck them quickly, and throw them into the pot of boiling water that was awaiting.  Minutes later, I recall sitting at the dinner table, voraciously stripping the cob with the sweet kernels bursting in my mouth.  In my mind, that particular flavor has yet to be replicated, no matter how delicious today's corn might be.

I think everyone probably has memories of tastes and times that are memorable and can't be repeated.  I have several other unforgettable taste memories:  My grandmother's soft raisin cookies hot out of the oven, my mother's apple pie, and the strawberries from my childhood in Pennsylvania.  The strawberry man would come down our street in season and you could hear him from half a block away shouting, "Berries!  Berries! Straww-berries!"  It was so exciting! When I could convince my mom to buy them, they were so delicious, especially with some whipped cream.  Strawberries have never tasted as good since.

I'm not complaining, mind you.  I still enjoy a good meal, even if I can't enjoy the subtleties of flavors that I used to.  I can still let my memory fill in the blanks.  Tomorrow, I might try another tomato and mayonnaise sandwich.  Maybe I can coax my memory of the perfect tomato into making it taste even better.