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Tuesday, September 2, 2014

Farber Day

The day after Labor Day is not a fun day to commute into Boston.  It took me an hour and 45 minutes to make my way into the Farber this morning for my monthly checkup.  Not to worry.  The overflow of patients from the holiday had everything backed up a half hour or more in the waiting room.  I'm used to this, so it didn't bother me.  It is what it is.  I just relaxed with my laptop, checked the news and played Sudoku online.

My results today were great!  For the first time in many years, I am no longer officially anemic!  My Hemoglobin level (Hgb) came in at 13.7 (normal range is 13.2-16.7).  Yay!  Last month it was 12.9.  Until I started taking supplemental iron pills in January, my Hgb had ranged from 10.5 to 12 over the last many years.  The other measures of anemia include red blood cell count (RBC) and Hematocrit (HCT).  Both of those numbers had also been consistently low.  Now both are in the normal range.  I do seem to have more energy (although I still take afternoon naps often), and I haven't been sleeping as long at night.  I'm actually feeling really good!

On September 18, I go back to the Farber to meet with the benign hematologist NP, Samira, to assess the effect of the iron pills I have been taking.  I have a feeling that I may be able to either cut back or stop taking them.  That would be great.  They are a major pain in the ass to open.  They have a foil seal that you have to get the edge lifted up just right to peel the seal off the pill.  Sometimes I have to take scissors just to get at the damn thing.  Grrrr!  Why do drug companies have to wrap their pills as if they are some kind of gift from God that only the worthy can discover the secret of how to open them?  I must not be worthy.  It pisses me off!

Another piece of good news is that Paul has agreed to my request to cut back on my Zometa infusions to every other month instead of monthly.  That's great, as I won't have to get an IV inserted every month, and my visits will be a lot shorter on the off months.  I can feel my veins are shrinking in horror with this monthly sticking, so I think they will be happy with the time off.  I will miss seeing my infusion nurse, Heather, on the off months though.  Oh well, every silver lining has a cloud.

My other numbers were great too.  My neutrophils and platelets are all OK, so I can continue with the Revlimid.  I'm entering the 26th month of my three-year Rev maintenance therapy and there is still no detectable M-spike or monoclonal gammopathy.  I don't know why I didn't do this before, but I asked my nurse, Mary, for a copy of the lab test results and pathology report from my last bone marrow biopsy in March.

The first thing I found interesting was that the Mayo Clinic lab report FISH test for chromosome abnormalities showed that everything was normal!  There was no indication of the t(4:14) abnormality that I was initially diagnosed with in 2011.  Really?  Mary suggested that this could be due to the fact that I now have minimum residual disease (MRD), and there were only 83 plasma cells identified for analysis.  So do I have the t(4:14) abnormality or not?  If not, maybe I'm not high-risk after all.  That would be nice, to say the least.  I think I might want to ask Paul about this.

The other report I got showed the pathology results of the BM biopsy in March.  Everything looked normal except for the following observation, "...occasional atypical plasma cells suspicious for involvement by a plasma cell disorder."  Hmmm.  I am now reminded of Paul Richardson's apt metaphor about the mongoose and the cobra.  The cobra is MM and his view is that you hit it hard up front until the therapy (mongoose) has the cobra confined to a box.  The mongoose then sits on the box so the cobra can't get out.  That's what my Rev maintenance therapy is now doing...sitting on that box.  But this pathology report shows that the cobra is not dead, just dormant.  If I make it through to next July with this maintenance therapy without a relapse, then I go off the Rev.  Without the mongoose on the box, what will the cobra do?  Will it come out and sink its fangs into my bone marrow again?  Probably so, but when?  It will be a ticking time bomb.  I guess I'll just have to wait and see.

On a lighter note, Gretchen is doing well in her recovery from her broken foot.  She is able to put some weight on it without the boot, which is progress.  She'll be able to drive her car much better without the boot.  Without my knowing, she has been taking the car out for short drives wearing the boot.  I get a clue when I find mail from the end of our road sitting on the counter.  I don't blame her...I would do the same thing.  But if you happen to be in West Newbury over the next several days, watch out for a green Subaru Forester and give it a wide berth.  (Just kidding!)

Still no progress in finding a new home.  We are thinking about generating a flyer to put in someone's mailbox asking if they are interested in selling if we see a neighborhood and a house we think we might like.  We know of several people who have used this successfully to buy their homes.  Not a lot of opportunities are coming up right now, so maybe this strategy will help. 

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.

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.

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!

Monday, May 26, 2014


After more than a year of trying to sell our house, we finally did it!  We have agreed on all the terms with the buyer and plan to have a signed P&S agreement by tomorrow.   We were concerned about a couple of issues that arose during the inspection, but the buyer agreed to pay the full offer price.  It's a cash transaction, so there is no mortgage contingency to deal with.  In addition, she will allow us to stay here for several months at a nominal rent.  That's a huge benefit.  It relieves us of a lot of pressure and gives us some breathing room to pack, get rid of stuff, and, oh yeah, find a new home.

This is a huge weight lifted from our shoulders, but it is also bittersweet.  We have really loved this home over the past ten plus years, and we will definitely miss it.  However, it is much too big for just the two of us, and the carrying costs are more than we want to continue to bear.  It's time to move on.  We are hoping to find a smaller home that will meet our needs for years to come (I'm being optimistic in looking forward to "years to come").  I'm sure we will find the right place.  In mean time, we plan to enjoy our last summer on the river.

There has been some recent buzz about a potential new immunization therapy for MM using a genetically-modified measles virus.  Two heavily-pretreated patients were given the vaccine, and the results were dramatic.  In both patients, the MM receded dramatically, but after several months, the MM returned in one of the patients.  The media has played this up, but we all have to understand that this is nowhere near becoming a potential therapy in the near future.  What I think is most exciting about this is that it exemplifies the vigorous focus now being concentrated on finding ways of triggering the body's own immune system to fight cancer.  I recently blogged about this last month:  Immunotherapy Research.  There are a lot of promising developments in this arena, and I expect that there will be some significant breakthroughs in the next few years.  Here is a video by Dr. Ken Anderson of DFCI showing how excited he is about these new approaches:

immune-based therapies for multiple myeloma

There seems to be a sense of optimism among researchers that we may be on the threshold of some major advances in fighting all cancers, not just MM.  I am grateful that I continue to be in remission, which may give me time to take advantage of some of these new therapies as they become available.  I know it's only a matter of time before my multiple myeloma rears its ugly head again.