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Monday, July 28, 2014

Stuff Happens

I haven't updated this blog for a while.  I've been a bit preoccupied lately, as Gretchen fell and broke her foot last week.  We were at a Barenaked Ladies concert in Lowell, and Gretchen was dancing with Jeff's girlfriend, Christine, when she failed to notice a step and fell.  Thank goodness she didn't hit her head this time!  She sprained her right ankle and broke her 5th metatarsal.  The concert was great, as in "Other than that, Mrs. Lincoln, how was the play?".

Anyway, she is now hobbling around with a boot and a walker, since she can't put any weight on her right foot.  I also bought her a wheelchair online (which might be hot, since it has hospital IDs and numbers to call if found).  The guy I bought it from insists it wasn't stolen, so I really want to believe him.  Once Gretchen doesn't need it any more, maybe I'll call to see if somebody wants it back.  But for now, I'm in denial.  Fortunately, she isn't in any pain now, and the swelling has gone down.  She has been icing it regularly and keeping it elevated, so I think the healing is going well.  We go back to the orthopedist again next Tuesday to see if she can start putting weight on it.  We'll see.

In the meantime, I'm getting some good lessons on how to keep things going around here.  I'm learning about where and when to put OxiClean tablets in the washer, when to use bleach or fabric softener, what not to put in the dryer (some hard lessons already learned there!), cleaning the dryer lint filter, and where the spare toilet paper is stored, to name a few.  But I think I'm catching on pretty well.  One good thing is that now that we are more or less house-bound, Gretchen is more amenable for me to cook some more meals.  Today, she suggested that I cook up a pork recipe that she found in a magazine.  It looked great, and I also found a cool recipe for a risotto (which I've never made) in the same issue.  I shopped for all the ingredients and made what I will modestly say was a fantastic meal for us!  Yum!  I may not know my way around our laundry room, but I do know my way around our kitchen. I love to cook!

Gretchen's injury also makes house hunting and packing a bit problematic.  We haven't found anything yet that meets our needs.  I mean all we want (ideally) is a small cape (2000-2500 sq. ft.) on a small lot (1/2 acre more or less), with a master bedroom and bath on the first floor, an attached 2-car garage, a wood fireplace, located on a quiet street with a private back yard.  Is that too much to ask?  Well, I think now that maybe it is.  We haven't found anything close to that yet.  I keep thinking about 6-year old Susan on "Miracle on 34th Street" who gave Santa picture of the perfect house she wanted and found out on Christmas morning that he had found it for her.  Well, it ain't Christmas, and I don't know any Santa Clauses, so this could be more difficult.

We have until the end of September to stay here at a very reasonable rent ($1,000/month).  We could extend this for another 3 months at our option, but we don't want to take advantage of the new owner.  We would really like to leave here by the end of September or shortly thereafter.

One option we are considering is to rent an apartment or house on Plum Island in Newburyport for the winter.  Then we would have a leisurely time to continue looking for the perfect home while enjoying the beach and ocean over the off season. This option is starting to sound pretty good.

Sunday, July 13, 2014

3rd Anniversary

Three years ago today, Gretchen and I sat in Dr. Richardson's office as he acknowledged that I had progressed from Smoldering Myeloma to full-fledged Multiple Myeloma.  By then, I had done enough research to know that this was serious news indeed.  At that moment, both of our lives changed forever.

I am thinking back on the feelings I had that day in Paul's office.  Was I scared?  Yes, but something about Paul's manner was very comforting and soothing.  He looked into my eyes and said confidently, "You are going to live into your eighties".  Just like that.  What might have been a traumatic experience suddenly became more one of concern and resolve.  Dr. Richardson's optimism gave me hope.  I immediately signed up for the MLN9708 clinical trial he offered me, and from that moment on, I embarked on a mission of "How am I going to beat this thing?".  It was now my job to research everything I could about MM and to participate as much as possible in my own care.

Over the past three years, I never dwelt on the question of "Why did this have to happen to me?".  Shit happens, so just deal with it!  Of course I was very fortunate to have responded so well to the therapy.  I don't know to what extent my positive attitude had to do with it, if at all.  In any case, I am blessed to celebrate this 3rd anniversary in Complete Response (CR).

In the intervening time, great strides have been made in the search to contain or cure MM.  The many new drugs available give additional hope to relapsed/refractory patients.  Recent research on monoclonal antibodies, immunization therapies, nanoparticles, gene therapy, personalized treatments, and other promising approaches have opened new frontiers in the fight against this disease.  I am fortunate to have Dr. Richardson and to be at the Dana Farber Cancer Institute, the epicenter of much of this research.

Every month as I go back to the Farber for my blood test and Zometa infusion, I have a bit of anxiety as to whether my remission continues.  I know that it is inevitable that on one of these visits, I will find that MM has reared its ugly head again.  But that could be many months or even years away, and when that happens, it will just be a new phase in the ongoing fight.  Dr. Richardson's words on that first day are ringing in my ears.  My eighties are still 9 years away.  You gave me your word, Paul, and I believe!

Monday, July 7, 2014

Soggy 4th

Rainbow in Newburyport
Usually, we go up to the farm in upstate New York over the 4th of July, but this year schedule conflicts got in the way, so we stayed home.  On the bright side, I saved about $200 on illegal fireworks.  Jason and his girlfriend, Jessica, came up Wednesday and Thursday.  Jeff joined us for a boat ride down the Merrimack River to Newburyport for dinner at the Black Cow on Wednesday.  On the way back, we dodged a few raindrops, but were treated to a beautiful rainbow.  It was a delightful evening on the water.

We hosted a cookout on Thursday with Jason, Jessica, Jeff, and Christine.  The weather, food, and company were all great.  Fortunately, we had no big plans for Friday, the 4th, when the deluge from Hurricane Arthur doused us thoroughly.  Still, we went to visit Gretchen's brother, John, and Kathy for an intimate family cookout.  My job was to hold the umbrella while John grilled chicken and burgers.  Due to inattentiveness, I kept dumping water off the umbrella onto him and the food, so I don't think I was much help.  I may lose my job for the next rainy cookout.

Interesting sculpture at Newcastle beach
Then on Saturday evening, Jeff and Christine came over for the night, and we spent Sunday at Great Island Common beach in Newcastle, NH.  There we had another cookout, walked the beach, and relaxed under the shade trees of this beautiful park.  A lovely day!

Except for Friday, the weather was great the whole time!  Looking back, I have warm memories of a wonderful time with our family.  The only thing missing was that our other two kids, Brian and family, and Holly and Ryan, weren't here.  That would have been a delectable icing on an already delicious cake.

Today I had my monthly visit to the Farber for blood tests and Zometa infusion.  The news was good!  My absolute neutrophil count (ANC), which was marginal last month at 1.09, rose to an almost normal level of 1.95 (normal is >2.0).  So I'm good to go with my Revlimid maintenance therapy for the next month.  My hematocrit also rose to 38.9 (normal range), the highest it has been since my diagnosis 3 years ago!  It appears that the iron supplements I am taking must be helping to reduce my anemia.  In other good news, I got my radiology report back from the complete bone survey x-rays I had done last month.  The bottom line is that there is no appreciable change from the survey a year ago!  Very good news, indeed.

A couple of things to note from the bone survey.  My skull showed small lucencies, which could either be due to benign "venous lakes" or "small myelomatous foci" (doc speak for MM lesions).  In any case, these have not changed since my first skeletal exam in 2011, so they are either benign or have remained under control since then.  Another notation of interest was: "Healed rib fractures involving at least the left fourth through 8th ribs appear unchanged from the prior exam".  Hmmm.  Do ya think that has anything to do with my fall from the ladder with the chain saw two years ago?  It certainly explains why I could barely get out of bed for next 6 weeks.  It was well-deserved punishment for my foolishness.

Dr. Richardson's nurse, Mary, indicated that since I have been on maintenance therapy for nearly two years now, I might be able to extend the Zometa infusion interval from one month to two or three.  She will check with Paul on that.  I won't get my hopes up, but that would be awesome.  Then I might be able to get my blood work done locally without fighting rush-hour traffic into Boston every month.  Please don't get me wrong here.  I am totally grateful that I am in remission and only have to go to the Farber once a month.  It could be so much worse.  I have no complaints whatsoever.  It's all good.