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Sunday, June 29, 2014


Friday we passed papers to sell our beautiful home in West Newbury.  We are delighted that the new buyer, Nancy, is really excited about moving here and loves this place as much as we have for the last 10+ years.  She has graciously allowed us to be tenants here for the next several months at a very reasonable rent, which should give us time to find a new place to live.

Our realtor, Sandy, has worked tirelessly for more than a year to help us sell this house, but I have to say that our cat, Sophie, really helped in the sale.   During the showing, Sophie followed Nancy all around the property as she looked at it, and Nancy said that she knew then that it was meant to be.  Here, Sophie is letting Nancy love her up while she went through the final walk through on Thursday.  No, I'm sorry, Nancy, but Sophie is not part of the sale.  We are really happy to be able to sell this house to someone who obviously cares for it as much as we have. 

But now what?  We are now squatters in our own home.  What next?  Where do we go from here?  A house?  A condo?  A rental?   We are now really free to consider many options, but it's kinda scary.  What if we got a condo?  Would I turn into a vegetable, transfixed on my computer all day, without any chores to do, no lawn to mow, no maintenance problems to address?  I certainly hope not.  I need something to wake up to in the morning and say yay, this is what I want to do today.  What about an over-55 community?  No kids, no joyous laughter during the day, just a bunch of grumpy old people.  Yes, it might be quiet, which would be a plus, but I don't know about that.  Gretchen loves young people, and I agree.  Young people help to keep you young. I don't want to grow old(er) ungracefully.  On the other hand, we don't want to end up next door to a bunch of teenagers with a loud stereo and boisterous parties either.  I dunno.

What if we just rent?  Then we would be free to travel the world and have time to look for the perfect place for us.  We don't know what perfect is, but we certainly haven't seen anything close to it yet.  Maybe we just put all our stuff into storage and stay with friends.  (To all our friends:  Don't panic, I'm just kidding.  We won't stay long.)

I had a wonderful time sailing with my friend Lew for 4 days last week.  We sailed down Buzzard's Bay to Newport and spent 3 nights on his boat.  Good sailing, good weather, good food, great was very enjoyable and relaxing.

On a health note, I had a CBC diff blood test done last week at my local PCP provider to check on my absolute neutrophil count (ANC), which was marginal on my last visit to the Farber.  I have heard nothing back yet, which I interpret as good news, so I am continuing to take my daily Revlimid dose.

Thursday, June 12, 2014

Maintenance Cycle 23

It has been almost two years now into my maintenance therapy.  Tuesday I went back to the Farber for my monthly blood test and Zometa infusion.  I also met with Dr. Jean Marie Connors, a benign hematologist, to address my iron deficiency.  Her NP, Samira, collected all the medical information about me since I first noticed my anemia, back while I was exhausted trying to ski in Switzerland in December 2008 (I think).  I may have gotten some of my dates mixed up, but I recounted my persistent anemia, no matter what pills I took (Iron, B12), my long debilitating encounter with Lyme Disease (severe neck aches, a lost summer of chronic fatigue, fevers, chills, rashes, shooting pains, Bells's Palsy (twice), peripheral neuropathy, double vision, you name it), my arguments with my PCP about refusing to diagnose Lyme Disease, my escape to the wonderful naturopath, Dr. Mikulis, to finally diagnose and cure my Lyme disease, and my somewhat contentious relationship with the hematologist from Lahey Clinic who couldn't improve my anemia, finally leading up to his diagnosis that I had Smoldering Multiple Myeloma in May 2011.  What a nightmare those times were!  Of course, that's when I made a bee line for the Farber and was fortunate enough to get Paul Richardson as my oncologist, who diagnosed me with MM in July 2011.  Even though I now have MM, at least I know I'm getting the best care possible and I am happy with my current situation.

Dr. Connors noted that my iron levels have improved somewhat since December, when tests found them to be quite low.  She said that the Ferrex pills I am taking might take up to a year to return my iron levels to normal.  I  could make that happen faster by taking an IV infusion of iron, but I decided that as long as the trend is positive, I don't feel that I have to resort to extraordinary methods.  She agreed, so I got a new prescription to up the dose of Ferrex from 2 pills a day to 3, and I have an appointment in 3 months to see how that is working.

My blood test numbers this month continue to be good!  The pathology results from last month's serum and urine electrophoresis and immunofixation tests both show no M-spike and no monoclonal gammopathy.  So I continue to be in remission, which is wonderful.  All my other numbers were great, except for one.  My absolute neutrophil level dropped from 2.06 (normal range) to 1.09 this time!  Anything below 1.0 is cause to suspend the Revlimid, as it depresses the neutrophils, making me susceptible to infections.  That was somewhat of a surprise.  I now have to take another blood test in two weeks to see whether it has recovered or whether I have to take a hiatus from the Rev.  I'm taking the minimum dose of 5 mg/day, so I can't figure why this would be a problem.  Oh well.

There were some exciting new developments at the recent ASCO Conference.  I won't go into detail, but three new drugs are showing significant promise:  panobinostat, daratumumab, and SAR650984.  It's exciting to see that there is progress on multiple fronts in the fight against MM.  I'm sure I will be talking about these drugs again as more clinical trial results come filtering in.

While at the Farber on Tuesday, I read an interesting article in their "Inside the Institute" newsletter about a current study published in the journal "Nature Medicine" about the protein p53, known by the imposing name as the "guardian of the genome".  p53 responds to any mutations in cell DNA, such as happens with myeloma, and tries to shut down cell division or order the cell to commit suicide.  However, there is another protein called YAP1, which if it is not produced in sufficient quantity, prevents the p53 protein from doing its job.  Researchers in the Farber and Italy have found that production of YAP1 is controlled by an enzyme, STK4.  By silencing the STK4, YAP1 levels increase and the myeloma cells die, both in laboratory tests and in animals.  This is a novel strategy for treating MM patients with low levels of YAP1.  Farber chemical biologists are working now on developing such agents.  Obviously, this is a long way from an actual marketable drug, but this gives an indication of the intensive research that is now going on to fight MM.  Ken Anderson is a senior author and Paul Richardson is a co-author of this article.  It's good to know that the Farber is still on the cutting edge of this research.

I have to say that I am really encouraged by the amount of basic research being conducted, the number of new drugs being developed, the number of clinical trials available, and the rapid pace of new drug approvals by the FDA in the fight against MM.  It's all good.

Tomorrow, Jeff, Brian, Pam, Logan, Gretchen, and I head up to the farm in northern New York state for the weekend. It will be great to see our grandson, Logan, and I hope he starts to get an affinity for the homestead that was established by his great-great grandfather in 1881.

Monday, June 9, 2014

Belated Update

It has been two weeks since I have updated this blog, and I apologize for the hiatus.  I ask myself why I have waited so long to send a new post.  Today I drove to the Farber to attend the last session of the Writing Workshop for this academic year.  As usual, it was a wonderful and enriching experience.  Each of the attendees is either a cancer patient, survivor, or caregiver, and we have developed a strong confidential rapport amongst ourselves.  It's a place where we can express ourselves freely, both verbally and in writing.

Amy had a new challenge for us today, which had to do with interrupting one's writing for whatever reason.  It really hit home.  She gave us a prompt based on a poem by Tess Gallagher, who had recently lost her husband, the writer Raymond Carver.  Here it is:

I Stop Writing the Poem

to fold the clothes.  No matter who lives
or who dies.  I'm still a woman.
I'll always have plenty to do.
I bring the arms of his shirt
together.  Nothing can stop 
our tenderness.  I'll get back
to the poem.  I'll get back to being
a woman.  But for now
there's a shirt, a giant shirt
in my hand, and somewhere a small girl
standing next to her mother 
watching to see how it's done.

Of course, there is an oxymoron here...she stopped writing the poem in order to write a poem?

At the class, we were challenged to use the first line of this poem to write about something that we stopped doing for some reason in order to do something else for us to explain.  She gave us all 10 minutes to create something.  Everyone came up with an amazing response.  I can't believe how creative people can be with such a short time to respond.  As for myself, here is what I wrote:

I Stop Writing the Blog

to finalize the sale of our home.  I sit on the
back deck with the bittersweet feeling of both
relief and sadness.  I reminisce about all the beautiful
sunsets I've watched, the family and friend visits we've
hosted, and the many memories of these last ten years here.
I rush to finish fixing up what needs to be fixed, and now we
search for a new down-sized place to live, knowing that 
it won't compare to what we are leaving behind.  I'll get 
back to writing my blog.  But for now, I am overwhelmed
with this major passage in my life.

When I read this to the class, someone suggested that this could in fact be my next blog post.  So here is another oxymoron.  My excuse for not updating my blog becomes the update to my blog!  No wonder I love this workshop!  Too bad I have to wait until September for the next meeting.

Tomorrow I head back to the Farber for my monthly checkup and Zometa infusion.  I also have an appointment with Dr. Jean Marie Connors, a benign hematologist, to check whether my continued anemia might be related to something other than my MM.  This is just a cautionary appointment, but I'm glad that Dr. Richardson has reached out for another opinion.

Last Friday, we attended my 50th MIT reunion.  Here is a picture of me and my best long-term friends over this last half century:  Joe Kasper, Steve Roberts, and Bob Paltiel.  All of us except Bob were wearing our 50th reunion cardinal jackets, perhaps for the only time.  It was such a treat to have us all together for this event, and we proudly marched into the Killian Court ahead of the 2014 graduates to participate in the commencement ceremony.  It was a memorable event.

I do have some other myeloma-related items to share from the recent ASCO Conference and some recent Farber MM research, but I'll save those for another post.  It's all good!