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Wednesday, December 31, 2014

Happy New Year

It's New Year's Eve, the last gasp of 2014.  The glow of the holidays is just beginning to fade.  The last of our family left for home today, but the echoes of their presence still punctuate the solitude.  We are winding down, glad to be finally alone but missing the joy of their company.  This is a quiet night at home...no party, no champagne, just quiet relaxing and an early night to bed.  We'll leave the partying and the fireworks to the youngsters.  Yawn...

This year has had its ups and downs.  Gretchen breaking her foot was a big downer, but she has pretty much fully recovered from that.  The other big news is that we managed to sell our house, and we are about to close Friday on our new one.  We took most of our family over to check out our new home yesterday, and they all loved it!  We are excited about the move, while still harboring nostalgic feelings about this place and the wonderful memories we have created here over the last eleven years.  The next couple of months will be filled with the stress of packing and moving. We can't wait for it to be all over and for us to move in to our new home.

I'm now sitting here just thinking about how lucky I am.  I'm feeling great, and my myeloma is still at bay.  We have an amazing family and a terrific circle of friends.  I'm optimistic about the new year!  I'm looking forward to getting settled in our new place.  I'm also anticipating new advances in MM treatments that will give all of us patients more hope for longer survival.

We have a couple of big trips planned for 2015.  In March, we are taking a family vacation to Maui, Hawaii for eight days along with Brian, Pam, and our grandson, Logan, as well as with Pam's parents and Brian's mom, Cheryl (my ex-wife), and her fiance, Fred (our optometrist).  I know this may sound weird, but surprisingly, we all get along really well, so it should be a fun vacation.

Our daughter, Holly, and her boyfriend, Ryan, are heading to Peru in February for her to teach pre-school children in a Montessori school.  That should be interesting, as she doesn't speak Spanish!  Ryan will work a lot from home there, although he travels world wide often on his job.  They will be there until next December, so we plan to get down there at least once in 2015.  While visiting them, we have to take a trip to Machu Picchu, one of the sites on my "bucket list', although I'm much too young and healthy to have a bucket list.  ;-)

Happy New Year to you all!  Most importantly, may you enjoy good health in the coming year.  


Tuesday, December 23, 2014

More Farber

Last Wednesday I went to the Farber to follow up on my iron Dextran infusion.  My results are still good.  All my iron and anemia numbers are still up in the normal range.  I have been feeling really good lately, and I have more energy than before.  I am not napping as much now, so that's positive.  Samira recommended that I still take iron pills (maybe every other day), just to keep my numbers in the normal range. OK, so I should be in good shape on that front for a while.

 Thursday I went back to the Farber again to attend the last Writing Workshop.  I have been doing these workshops for the last 3 years, and I have found them to be emotionally intense, as well as really helpful and refreshing.  Amy, the moderator, now has extra duties at Boston College, so she can't keep doing this.  Too bad...she has been great!  I will miss the group and her monthly writing challenges, which have been inspiring.  This time, Amy challenged us to write a "6-word memoir".  Legend has it that Ernest Hemmingway was once challenged in a bar to write a tragedy in only 6 words.  He responded with, "For sale: baby shoes, never worn".  Since then, this has become somewhat of an art form.  There are several books on this, one of which is entitled, "Not Quite What I Was Planning".  Anyway, in response to the prompt, I wrote:  "Thought I knew.  I was wrong".  I will miss these gatherings.

Today I had my monthly visit and bi-monthly Zometa infusion.  Thankfully, my numbers are all still good!  While there, I ran across Kathy Colson, the RN who managed the MLN9708 trial that I started on 3 1/2 years ago.  She said she often thinks about the incredible coincidence that got me into that trial on my first visit to the Farber.  Their original candidate, with the initials WO, had just backed out.  Since they had already submitted him using only those initials, the only way they could replace him was with someone with the same initials.  What serendipity!  I still shake my head when I think about this.  Kathy still marvels about it.  The rest is history.  I  responded really well---MLN9708 hit a home run with me.  What a lucky son-of-a-gun I am!

That reminds me of the story of James Bond, a long-term MM survivor, who spoke at the Farber Patient Symposium a couple of weeks ago.  He was in dire straits and out of options when he got into the first clinical trial using the new wonder-drug, Velcade, with Paul Richardson about 10 years ago.  It was a long shot, but everyone thought it was prophetic that the trial number randomly assigned to him was 007!  Miraculously, he's still here, a testament to serendipity and the effectiveness of the recent advances in MM therapies. 

I promised to give an update of the recent ASH Conference held in San Francisco.  Talking with Kathy today, we discussed the recent clinical trial results with MLN9708 (Ixazomib) presented at ASH. The results have been fantastic, and The FDA may approve it as both a front-line and R/R treatment in 2015.  It's a great drug, with the advantage of being pill not an infusion, and I was fortunate to be part of the initial Phase I trial.  It may eventually replace Velcade as the treatment of choice for MM.  Thank you, Paul Richardson!

At the Farber's Patient Symposium on December 13, Ken Anderson summarized the future of novel agents against MM.  The most promising future agents are the monoclonal proteins.  Elotuzomab (anti CS1) and Daratumumab (anti CD38) are both showing great promise. Another promising agent is SAR650984 (anti CD38).  Immunization therapies have also come a long way.  One use of these is in early stage disease, such as MGUS and Smoldering MM.  High-risk patients in these categories may benefit from early intervention before progression to full-fledged MM.  For patients with advanced MM, suppression of the baseline immune system can inhibit the effectiveness of immunization therapies.  However, recent advances in using the PD1/PDL1 blockade may enhance the effectiveness of immunization, allowing the body's own immune system to target the MM cells.  There is still a ways to go in using cytogenetics to provide individualized treatment regimens, but the future is very promising in this arena.

We are awaiting the arrival of our family for the Christmas holiday.  I'm excited!  Jason may come in from Connecticut late tonight, and Holly and Ryan are arriving from San Francisco tomorrow morning.  Jeff and Christine will come over tomorrow and we will have Christmas Eve and Christmas day here, celebrating our last get-together in this house.  The menu includes smoked ham and egg plant parm tomorrow and standing rib roast Christmas day, along with Yorkshire pudding, lasagna, calamari salad, and a lot of other stuff I forget.  Needless to say, we won't go hungry.  Brian, Pam, and our grandson, Logan, will be coming in on Sunday to spend a few days, so I'm looking forward to spending a relaxing week with family.

Then comes the closing on our new house on January 2, and we have to start packing and moving.  In the meantime, we'll just try to enjoy. 

It's all good!






Monday, December 15, 2014

Urologist Visit

Today I had an appointment with a PA urologist, Susan Palmer, to followup on my recent high PSA reading of 10.5.  She was very competent, knowledgeable and informative.  I have to admit that having my deepest internal anatomy probed by a beautiful 30-something woman was, well...different.  I don't know what else to say about that.

Anyway, there is no surface indication of a tumor, although one lobe is larger than the other, which is not unusual.  The interesting thing about prostate cancer is that there are no reliable non-invasive tests.  The PSA test is only an indicator of possible problems, as is the physical examination.  The only way to know is to do a biopsy, which is an uncomfortable procedure and is not without the risk of infection (3%).

As is my wont, I had done a some research in recent years about the efficacy of doing the PSA test.  Many physicians and organizations advise against it for a variety of reasons, including false positives and negatives, the slow growth rate of prostate cancer, and the potential debilitating side effects of treatment.  Since I have no family history of prostate cancer, I suspended taking the PSA test after 2009, when my number was about 2.0.  As I mentioned in a previous post, I only opted to revisit this test because of the potential risk of secondary cancers associated with my MM chemo treatments.

I had a very good discussion with Susan about my options, one of which would be "See ya later".  I don't have any unusual symptoms and have no trouble urinating.  Also, I have not noticed any recent changes that might be cause for suspicion.  Therefore, I opted to have another PSA test done in a couple of months.  At that time, we can see if my elevated test result was an anomaly, whether it is stable, or is increasing.  If it goes any higher, I think I would opt to have a biopsy done.  Otherwise, I would probably just continue to monitor it.  If I do end up having a biopsy and the results were to be positive, that would bring up a whole new set of decision options to consider. 

Susan made an interesting point.  If one's life expectancy is less than 10 years, they generally do not recommend drastic treatment options for newly-diagnosed prostate cancer, because it is slow-growing and usually takes ten years or more to metastasize into a life-threatening situation.  Now I am a real optimist.  I personally expect to be here to continue to amaze, amuse, and confound everyone around me ten years from now.  But statistically, that would make me an outlier. 

So!  Here's the bottom line.  I'm not going to do anything drastic.  I will await my next test results in February and take it from there.  In the meantime, I don't plan to worry my pretty little head about it.  There is life to be lived, and that's what I'm going to do.

Saturday, December 13, 2014

Orlando and Farber Patient Symposium

Things are a little bit crazy right now.  We just returned Monday from 6 wonderful days vacationing in Orlando, Florida with Jason and his girlfriend, Jessica.  No, we didn't buy the time share they tried to sell us during the obligatory sales pitch.  It sounded like a pretty interesting proposition, but to buy both a house and a time share at the same time would be the height of foolishness.  I've been known to be foolish, but not that foolish.  Besides, we both think that a time share would be too constraining on our choice of future vacations.  We don't like limits on where we can go, even if they are broad limits.

We had a terrific time with Jason and Jessica!  We bought multi-day, two-park tickets to the Universal Studios and Islands of Adventure parks, and we spent most of Thursday and Friday there.  It wasn't crowded and the lines were only 5-10 minutes for most rides, so we got the most out of it.  Unfortunately, Gretchen can't do any of the rides because of her head injury, but she enjoyed kibitzing and chatting with people while the rest of us were whirled, dashed and thrashed around in dizzying 3-D rides and death-defying roller coasters.  I'm proud of myself that I almost threw up only once.  Young people are so great to be around...they infuse an energy and vitality that makes us feel young again.  The two Harry Potter attractions were terrific (especially Diagon Alley)!  I would highly recommend them if you decide to visit Universal, that is if you can afford it.  In a stroke of marketing genius, each of the Harry Potter attractions is in a different park, so you have to buy a two-park ticket to experience the whole thing. 

Dinner at Clearwater Beach
Then on Saturday, we drove to Clearwater Beach, where we sunned ourselves in the 80 degree temperatures and dipped our toes in the waters of the Gulf.  We capped off the day with a delightful dinner on a waterfront deck as we watched the sun set. Nice!

Reality set in as we returned home to Boston on Monday to face a temperature of 23 degrees (yikes!), followed by a Nor'easter with howling winds that dumped 5 inches of rain on us over the next couple of days.  It could have been worse.  It could have been 3-4 feet of snow.  Now why is it that we're buying a house in Massachusetts again?  Please remind me.

Today I went in to the Farber to attend their annual Patient Symposium, where Ken Anderson, Paul Richardson, and others brought us up to date on the latest MM laboratory and clinical research, including results from the ASH conference held last weekend in San Francisco.  This the 4th time I have attended this Symposium, and it is always an exciting, uplifting experience.  I'm looking forward to being around to attend many more.  It's really encouraging to see how much progress is being made in finding new MM treatments from year to year.  I was especially interested in the encouraging new results for monoclonal antibodies and immunization approaches, as well as recent progress in genome sequencing giving better understanding of MM mutations.  I haven't had a chance to digest all the information yet (it's like drinking from a fire hose), but I hope to provide a summary in a future post.

Sunday, November 30, 2014

Thanksgiving

I had my monthly visit to the Farber on Monday.  All my numbers still look good!  My iron results are still great after my Dextran infusion last month.  I have noticed a distinct increase in my energy level.  While I still sleep a lot (10+ hours a night), I haven't been tired during the day, so I haven't been napping much lately.  Here it is about 11:30 pm, and I am still pretty wide awake.  Yahoo!

We got our first snowfall of the winter this past week.  I wasn't quite ready for it.  I have a cord of wood sitting in the driveway waiting to be stacked in the garage, and there are still some plantings to be cut down for the winter.  At least I finally got most of the leaves blown away or scooped up with my mower before the snow hit.  I've been a little bit lazy about getting all this done.  Maybe it's because I know it's the last time I'll be doing this here.  Or maybe I'm just lazy.  Anyway, I hope to get these things out of the way over the next couple of days.

We had a nice, comfortable Thanksgiving.  Because our family is dispersed, only Jeff and Christine, along with her mother and sister were here.  I roasted a 16-pound turkey on the grill and Gretchen worked her usual magic with all the fixins.  Everything was delicious!  It has always been our favorite holiday, and it was special to celebrate it here for our last time in this house.

Yesterday, we had our special friends, Bobby and Cathy, along with their children and spouses and granddaughter, for our traditional Christmas Tree hunt.  We do this every year on the Saturday after Thanksgiving.  We went to a local tree farm and selected Christmas trees to cut down.  Afterwards, we come back here for gumbo and chicken enchiladas.  Delicious!  This year, Gretchen and I thought we might not have a tree at all, since we will be moving soon, but we then the decided to get a small tree.  We found a tree that looked a lot bigger than what I thought we were looking for, but Gretchen really liked it.  OK, so I decided to cut it down.  Jeesh!  The saws they gave us must have been really dull, because it took me about 10 minutes to cut that sucker down (pant, pant).  We struggled to haul that thing on a sled all the way to the front to pay for it.  When we got there, we realized that this tree was actually much larger than we had thought, so we pleaded with the owner to trade it in for a small tree at the entrance that was already cut.  Gretchen did the talking, so they agreed, and we now have a nice small tree.  All that work wasted!  But I'm really glad to have a small tree for a change.

On Wednesday, Gretchen and I are flying to Orlando, Florida for 5 nights.  This is a reprise visit from our last visit in the spring to look at buying a timeshare from the Marriott.  We still aren't planning to buy one (Hello!  We just bought a house), but we still have to sit through a 1-hour presentation while there.  Jason and his girlfriend, Jessica, spent this Thanksgiving with her parents, but they are both coming to Orlando with us this week.  That should be a lot of fun.  She has never been on a plane before (!!), so this should be a real treat for her.  I just checked the weather and it looks like it might be in the mid 70's for the week without much or any rain.  That would be awesome!  They (and I) like adventures, so we may go to Universal Studios, and then perhaps drive to Clearwater Beach for a day.  Who needs to pack for a move, right?

Speaking of moves, we are proceeding with getting a mortgage and are still planning to close on January 2, 2015.  The owners of our future home, Ed and Claire Flaherty, have decided to put their furniture in storage and rent a place on Salisbury Beach on the Ocean for 6 months.  They got that idea from us, as we were thinking of doing that before Nancy, the new owner of our house, offered us a very reasonable rent to stay here.  They plan to move out before Christmas!  Well guess what, we aren't ready to move yet.  We have no intentions of rushing around trying to pack everything before the Holidays, so we are just going to chill for a bit.  I mean really, let's not get our bowels in an uproar over this.  Everything will happen in due time.


Sunday, November 16, 2014

Annual Physical

Well, it's official.  The P&S has been signed for our new house.  We are looking to close on January 2, although we still don't know when we will be moving in.  Nancy, who bought our house, would be happy for us to stay here through the winter, as she won't be moving in before spring.  That gives us a lot of flexibility to allow the owners of our new house to stay for a while if they need time to find their new home.  I don't know when this game of musical chairs will end.

I haven't had an annual physical for a while, so I recently scheduled one.  After the obligatory proctology exam (bend over and smile), Dr. Guidi informed me that my prostate is somewhat enlarged.   Over the years, I have elected not to have my PSA tested during normal blood tests.  The last time I had a PSA test was at least 15 years ago, and my number was below 2.  There is a lot of controversy in the medical community about the necessity for the PSA test, as it often reveals false positive results, which may lead to over-treatment of either benign or slow-growing prostate tumors.  Besides, I had no family history of prostate cancers.  So I again told the doctor not to schedule the PSA test when I came in for my blood test the next week.

When I arrived for the blood test, I suddenly made a spur-of-the-moment decision to have my PSA tested.  I changed my mind on this based on the fact that the chemotherapy I underwent for my ASCT (melphalan) and long-term use of Revlimid both have resulted in increased incidents of secondary cancers in MM patients.  For example, I had surgery to remove a squamous cell carcinoma from my face earlier this year.  I don't know that that was linked to my MM treatments, but I think I can no longer wait passively while sitting on potential time bombs like this.

A few day later, the nurse, Gail, called me with the results of the tests.  "They were mostly good", she said.  Hmmm.  So, exactly what does "mostly good" mean.  Well, she then told me that my PSA result was high.  How high?  "10.5", she said.  Gulp.  For someone my age, normal PSA results should be less than 6.5-7.5, so this is a bit out of the normal range.  She then proceeded to get me an appointment with a urologist at Lahey Clinic on December 15. 

At this point, I decided to seek Dr. Richardson's advice.  I emailed him about my results and my scheduled appointment.  I told him that if I do get diagnosed with prostate cancer, I want to be at the Farber, and who should I see?  He responded immediately and said to go ahead with my appointment next month and we can go from there once we know what's going on.  He then recommended a couple of specialists at the Farber if that becomes necessary. 

I have to admit that I'm mildly concerned, but I'm not stressed out about this.  Que sera, sera.  All I can do is wait and see.  In the meantime, The Patriots are about to play the Colts, so I have to go watch the game!

Saturday, November 1, 2014

New House

It's been a busy week.  Monday I had my monthly checkup at the Farber.  Fortunately, everything is still good with the MM.  Knock on wood.  The most interesting results were my red blood cell counts after getting the iron dextran infusion the week before.  Wow!  My hematocrit ("crit" in nurse speak) jumped from 37.7 to 44.4 (normal range is 38.4-48.2).  Similarly, my hemoglobin went up from 12.6 to 14.6 (normal range is 13.2-16.7).  That sure took care of the anemia!  I feel like Popeye--"I eats me spinach".  Watch out, Bluto!

After my appointments, Gretchen and I drove up to our summer place at the farm in upper New York state to join Jeff and Christine for a couple of days.  We had a great time cooking on the grill, sitting by the fire pit, and navigating the ATV trails.  We celebrated Christine's birthday on Tuesday by driving up to Montreal.  We had a delightful visit to the Museum of Fine Arts and then capped off the day with a wonderful meal at a nearby French (what else?) restaurant called L'Autre Saison.  It was scrumptious.  Montreal is a great city, and it is only a 45 minute drive from the farm.  Sadly, the season is coming to an end, so we closed up the place for the winter.  Until next year.

The biggest news of the week is that we have finally found a house!  Our experiment of dropping off flyers at houses that looked interesting to us has paid off.  We liked this house, and the owners got back to us saying they hadn't really thought about selling.  However, a couple of weeks later, they changed their minds.  We looked at it and it is the first house we have seen that meets all the criteria that are important to us.  It has a lot of privacy on a quiet street in a good neighborhood, an available first floor master bedroom/bathroom suite, two wood-burning fireplaces, attached two-car garage, upgraded granite kitchen and bathrooms, etc.  It even has a "drive-out" garage door in the basement that could accommodate storing our boat for the winter.  How cool is that?

 Here are some more pictures of our future home.  The eat-in kitchen features beautiful cherry cabinets and a gas stove.  It also has a three-season screened in porch that overlooks the private wooded back yard.  We haven't signed all the paperwork yet, but we are planning to close on the new place by January 2, 2015.  Hopefully, they will find a new house by then.  Otherwise, we may have to try negotiating an extension of our rental agreement here and renting our new house back to them for a couple of months.  Kind of weird, huh?  We'll see.  This is a really exciting time!

To cap off a whirlwind week, Jeff and I are going to the Patriots-Broncos game tomorrow.  This is a huge rivalry between two of the best quarterbacks of all time.  It will be a "Clash of the Titans" between Peyton Manning (#18) and Tom Brady (#12).  Some have referred to this as the "War of 1812".  Win or lose, this will be a memorable game.  It is supposed to be cold and rainy, but that's what NFL football is all about--pay $50 to park and $150 for a ticket to suffer in the stands in miserable weather with a lousy view.  Who wouldn't want to do that? 


Friday, October 24, 2014

Iron Dextran Infusion

Yesterday morning Gretchen and I fought miserable weather and rush-hour traffic conditions driving to the Farber for my scheduled infusion of iron dextran.  The total procedure took over 5 hours, so we had the pleasure of hitting the afternoon traffic on our way home as well.  Fortunately, I had no side effects or allergic reactions and the procedure went smoothly.  Hopefully, this will solve my persistent anemia without the need for any more iron pills.  We'll see.  I head back to the Farber again on Monday for my monthly checkup and Zometa infusion.  Mary McKenney didn't want me to get the iron dextran and Zometa on the same day, necessitating the two trips.

I keep getting comments on my blog post from August 28, 2012 entitled "Myeloma-Lyme Connection?  I Say Yes!"  I suspected that the reason for this is that people searching for any connection between Lyme Disease and MM must come across that particular post.  To check that, I Googled "multiple myeloma lyme connection".  Guess what the number 1 Google result is.  Yup, that's the one!  I don't know how it got there (I sure didn't pay Google to push it up the list), but I'm glad because it keeps attracting comments.  I try to respond to these comments, so the result is a continued dialog between me and other Lyme/MM sufferers.  I got another thoughtful comment the other day from a woman whose 15-year old daughter was seriously ill with Lyme Disease and had MGUS as well.  After extensive treatment for the Lyme, the MGUS disappeared.  Hmmmm.

I followed up with the Multiple Myeloma Research Foundation (MMRF) as I said I would in my last post.  I talked to an RN Millicent and suggested that they should change their list of general health categories to include Lyme Disease and other autoimmune disorders.  While she was polite, I detected a distinct lack of enthusiasm for my suggestions.  She said she would follow up, but I don't expect to hear back any time soon.  My next step is to start sending emails in the hope of getting some positive response.  I'll let you know what happens.

While at the Farber yesterday, I read an article in their newsletter about a novel compound the prevents MM from metastasizing into the bones.  Myeloma cells originate in the bone marrow, get into the blood stream, and eventually return to the bones, where they can form numerous lesions.  A substance called stromal cell-derived factor-1 (SDF-1) is a protein that attracts myeloma cells.  Mice with advanced MM had sharply higher levels of SDF-1 in the sites in their bones where metastasis had occurred.  Farber researchers, headed by Dr. Irene Ghobrial, are testing a substance called olaptesed pegol that binds tightly and specifically to SDF-1.  Lab experiments with mice have shown that olaptesed pegol alters the bone marrow, rendering it uninviting to myeloma cells, leading to prolonged survival.  It is now being tested in a clinical trial with MM patients, with more trials to come.  Great!  I'll keep an eye out for results from these trials.

Wednesday, October 15, 2014

More on Lyme

I just got a recent email from a woman who titled her email "Lyme m spike".  She had found a elevated m spike in her urine and wanted to talk to me.  She said she has not felt well for many years.  Does that sound familiar to those of you in the chronic Lyme community?  Anyway, she hasn't talked to me yet, probably out of fear.  She emailed me to say she was afraid to call me because she wasn't sure if she had MM and didn't want me to scare her any further.  I wrote back to her that she might have a precursor condition, and she should find out her status as soon as possible.  Sadly, I have not heard back from her.  Many people, faced with a possible bad diagnosis, put their heads in the sand and refuse to deal with it.  I hope to hear from her and I hope she follows up on  her initial test results.

This email has triggered me to go back to revisit my long-felt connection between Lyme disease and MM.  I belong to the Multiple Myeloma Research Foundation (MMRF,) which has enrolled a large number of MM patients to find some correlation between MM and prior medical problems.  I have listed my profile with them.  However, the list of medical problems identified in the list they provided for general medical conditions is pretty much useless.  Under their category of General Health, they offer only 13 options.  Of these, only 3 have had any positive response from MM sufferers:  high blood pressure (31%), osteoporosis (15%), and diabetes (7%).  Everything else was zero!  41% of the respondents listed "Other".  I think the MMRF has missed the boat with this.

Let's just talk about the "Other".  There is a lot of indication that autoimmune disease may be correlated with MM, as I have blogged about earlier.  Today I emailed MMRF to expand their general health categories to include Lyme disease, along with some other autoimmune disorders, such as Lupis, etc.  Furthermore, I would like the MMRF to fund some studies to investigate these links.  I plan to follow up with this and hope to get more information that can be shared among the MM community looking for common links.

At the very least, I would like to see some protocols put in place to do early screening of blood protein levels for those patients presenting with Lyme disease or other autoimmune diseases.  Early diagnosis would provide tremendous long-term benefits to those who have MM.  I was lucky to have a PCP who noticed my elevated protein levels early and referred me to a hematologist before it got out of hand.  Too many MM patients present with advanced symptoms, such as broken bones or kidney problems, when early screening would have helped to give early treatment and a better prognosis.

I'll let your know how the MMRF responds to my suggestions.




Thursday, October 2, 2014

Summer's End

In my last post, I said I was going to get an IV injection of Dextran iron at the Farber on Sept. 30.  I'm sorry but I lied.  I didn't do it.  After making the appointment, I started thinking, "What am I doing?".  This visit to the Farber would be the first time in over two years that I wouldn't need an IV, since I wasn't getting the Zometa this month.  Yay!  So why would I sign up for getting an IV that day?  Furthermore, I wasn't scheduled to come in until 10:30, so I wouldn't have been able to start my Dextran until 12:30, a 5-6 hour procedure.  Duh!  I must have had a real brain fart when I signed up for that.  So I decided to cancel that and reschedule.

As for my visit, all is good with my MM!  The pathology results from last month showed that both my blood (SPEP) and urine (UPEP) test results showed no M-spike and no monoclonal protein.  So I'm still good.  However, my red blood cell counts weren't so stellar.  My RBC dropped from 4.6 to 4.2, still in the normal range.  However, my HCT dropped from 39.4 to 37.7, below the normal range.  Also, my Hgb dropped from 12.9 to 12.6, also below the normal range.  The upshot of all of this is despite all the iron pills I've been wrestling with over the last 9 months, I'm still slightly anemic.  Jeesh!  What is it with this?

I have to wonder if I am losing blood somehow.  As far as I can recall, I haven't had any traumatic accidents involving significant blood loss.  I still have all my limbs.  Could it be from my colon?  I had a colonoscopy in April 2013 which was clear, showing no polyps.  So I should be good there, right?  Hmmm.  I have scheduled an annual (or is it a bi- or tri-annual) physical in a couple of weeks.  I think I will bring subject this up with my PCP.  Maybe this planned infusion of Dextran will solve the problem, but if I am slowly losing blood by some mechanism, that might only be a temporary solution.  We'll see.

I've been kind of busy the last couple of weeks.  Last weekend, Jeff and I went to the farm in New York.  We had a great time cooking out, playing some golf, riding the ATV, and socializing with the neighbors.  Then on Monday, Jeff and I went on a charter deep-sea fishing trip out of Gloucester, MA, organized by my good friend Paul Pakos.  That was fun.  I'm the only one on the boat who actually caught a rock!  I also caught a pile of seaweed and a stick.  I did catch one small pollock though.  Between us, we caught enough pollock and red fish for us all to have a couple of meals from the catch. Yum!  This Sunday, I plan to go sailing on Buzzard's Bay with another good friend, Lew, for 2 or 3 days.  We may go to Vineyard Haven on Martha's Vineyard.  I have to say that being retired doesn't suck.

The house-hunting is still going slowly.  We've seen a couple of potential properties come on the market, but nothing has floated our boat yet.  Tomorrow, we will visit one of the houses where we left a flyer who might be interested in selling, but we're not getting our hopes up.  We'll see.  

Fall is upon us.  The trees are turning color and the leaves are starting to fall.  There's a chill in the air now.  Brrr!  Now is the time to fertilize the lawn for the last time and get the boat out of the water for the winter.  It's sad to see this wonderful summer come to an end.  Sigh.

Friday, September 19, 2014

Drivel

Okay, here are my thoughts.  I haven't been updating this blog often enough, so what should I do?  I have noticed that when I don't have a specific topic to write about, I tend to wait until some inspiration occurs.  That hasn't been happening often enough lately, so I'm thinking about taking a different tack.  I have noticed that if I sit down to write without a real plan and just start typing, sometimes I get inspired along the way.   Maybe this is one of those times. So here it goes.....

....OK, just stick with me here for a minute while I wait for the creative juices to start flowing....

....Well, it didn't work this time.  I still don't feel inspired. Damn!  I was sure this would unleash a torrent of priceless prose.  Maybe I'll just settle for the mundane.

Yesterday I went to the Farber for my iron tests.  The results were inconclusive. Some numbers got better and others got worse, a mixed bag.  I won't bore you with the details, but basically I am still iron deficient.  The upshot is that I have the opportunity to get my iron counts up to normal by taking a one-time injection instead of months of wrestling with those damn iron pills.  I decided to go for it, so on Sept. 30 I will go to the Farber for an injection of 2000 mg of Dextran, which should instantly boost my iron levels back to normal.  It's a 4-5 hour process, but assuming I don't have any adverse reaction, I shouldn't need any more supplements after that infusion.  I'll take a book to read.

I also attended the first session of the Writing Workshop yesterday at the Farber.  Wow!  What a treat!  Amy Boesky is our moderator, a writing professor at BC.  She is so inspirational and challenging.  She gives us a prompt every month based on a poem and asks us to respond to the essential premise of that poem in ten minutes.  What a challenge!  As you know from my previous blogs, I tend to be deadline driven.  Some of my best efforts have come from these quick challenges.  I did OK yesterday.  Most of the group suggested I post my response on my blog, but I'm not comfortable with that. The bigger question is what am I going to do with all of this writing stuff.  Maybe a memoir?  I have been encouraged to consider consolidating my blog posts into a book.  I don't know if I have time for that.  In my last blog post, I used the phrase "I don't have a life".  I got a lot of shit about that from a couple of my readers.  They are right.  I do have a life, and I do have something to offer.  Maybe a book is in my future, but I don't yet know what it would be about.  Amy offered to help me organize it if I ever decide to go in that direction.  Hmmm.

There is a lot  going on in the MM community.  Pat Killingsworth just posted a blog about a recent Cure Talk audio broadcast on the importance of achieving Minimal Residual Disease (MRD) in MM.  Pat was a panel member in this is hour-long session with Dr. Guido Tricot, which I found to be extremely interesting.  Tricot is of the persuasion that hitting MM hard up front and achieving MRD is extremely important in treating MM.  He comes from the Arkansas faction of MM therapists who give lots of chemo, do tandem autologous transplants, consolidation and long-term maintenance therapy.  Their program requires one to take months hospitalized dedicated to the program.  They claim to be able to cure MM with this approach in most low-risk MM patients.  Here is a link to the Cure Talk audio for those who might be interested:  minimal-residual-disease-with-dr-guido-tricot.

The upshot is that Dr. Tricot feels it is very important for newly-diagnosed patients to achieve MRD with their initial therapy, especially for those who are at high risk (e.g., t(4:14)), such as myself.  He eschews the incremental approach to contain the disease and then try to control it later after it relapses.  Once MM relapses, your life expectancy goes into a downward spiral.  Salvage therapies usually don't last long, and then one has to keep trying new drugs to extend survival a few more months.  Of course, there are new drugs out there, but at some point the options run out.

He goes to the extreme of suggesting tandem ASCTs for newly-diagnosed patients, along with substantial chemotherapy drugs, similar to the Total Therapy 3 approach of the Arkansas group.  I'm not sure I go to that extreme, but I agree with him in principal about hitting it hard up front.  I feel so fortunate to have found Dr. Richardson, who subscribes to a lot, but not all, of his approach (mongoose vs. cobra).  After all of the agonizing I went through, I am now confident that my decision to do the ASCT clinical trial was the right one.  I was selected for the single vs. tandem ASCT arm, which Dr. Richardson preferred.  Thankfully, I have not only achieved MRD as shown by the bone marrow biopsy flow cytometry results, but also Stringent Complete Response (sCR) based on continued negative results from my blood and urine tests.  From what I have read, I have a good chance of staying in remission for a long time.  Yay!  But time will tell.

Now see.  I didn't have anything to write about when I sat down at my computer here, but now I have managed to waste your time with several paragraphs of drivel.  I have more drivel I could write about now, but I think you all may have reached your drivel limit.



Tuesday, September 16, 2014

House Hunting

Today Gretchen had another followup visit with Dr. Rotondo, her orthopaedist. The news was good: her break is healing normally.  It has been 8 1/2 weeks since her fall, but it is a slow process.  Although she doesn't have to wear the boot all the time, she still wears it a lot because her foot hurts when she walks around without it for too long.

Since this accident, I have been serving as her personal chauffeur and gopher.  I haven't minded it at all since I have no life.  It gives me a sense of purpose, and I am happy to help.  A few days ago, she drove her car for the first time into Newburyport while wearing her boot.  With her typical candor, she admitted this to Dr. Rotondo, who was less than plussed (i.e., nonplussed).  He told her that if she were to run into a tree while driving with her boot on, to make sure to disavow getting his approval to do so.  (I suspect he might have had a flash vision of a malpractice suit in his future.)  He suggested that she wear the boot to the car, remove it while driving, and put it back on when she gets to where she is going.  We both agreed that sounded like good advice.  I don't know why neither of us had thought of that.  I guess that's the kind of good stuff they teach you in Medical School.

Gretchen also got fitted for an Ankle Stabilizing Orthotic (ASO) today, which can serve as a bridge between the boot and normal shoes.  This should make it easier for her to get around while the slow healing process takes its normal course. 

The house-hunting process has been dragging, so we typed up a letter to put in the mailbox of any house with curb appeal that looks like we might like to buy.  Using the mobile Zillow app on my iPhone, we can check out the basic information on each house of interest to see if it might fit our requirements.  We scoured our town of West Newbury, and found about a dozen prospects where we left the flyer.  We have actually gotten two responses so far.  One said they were not in the market now, but might be by next spring.  The other one just contacted us and said they might be willing to sell, so we have made a tentative appointment to go see their house on October 2.  Considering how few letters we have distributed, I think that has been a pretty good response rate.  We may expand our search to the neighboring towns over the next few weeks.

Our new landlord, Nancy, moved a lot of her stuff into the cottage last Saturday.  She remains firm that she doesn't want us to leave until we have found the right place.  She is also not planning to put her house up for sale until next spring, so there is a possibility that we could stay here over the winter.  We would have to negotiate a new rental agreement to stay beyond December at a more market-based rate if we haven't found a place by then, which is only fair.  In a way, it's nice not to have a lot of pressure to get everything done right away.  On the other hand, it's an easy excuse to procrastinate and be lazy about things we know we're going to have to do eventually.  Anyone who knows me knows that I never put things off until the last minute.  Next joke!

Thursday, I go back to the Farber to meet with my benign hematologist, Dr. Connors, to evaluate the effect of the iron pills I have been taking for my anemia.  Since my numbers looked really good at my last regular visit, I suspect it should be a good report.  I hope I can stop taking those iron pills 3 times a day.  Every time it becomes a wrestling match between the wrapper and me as I try to extricate the pill from its nearly impenetrable enclosure.  I don't think nuclear warheads are protected as carefully.

I'll give a report on my results, hopefully in a timely way.




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

Update

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

Homeless

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 camaraderie...it 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

Sold!

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.



Thursday, May 15, 2014

Pin Cushion

Full Moon over Farm
I haven't updated this blog yet this week, since I spent from Monday to Wednesday up at the family farm in Champlain, New York with my son, Jeff, to open it up for the summer.   The Internet connections aren't so great up there, and besides, we were too busy having fun for me to worry about my blog.  The weather was great, and on Tuesday, we cooked porterhouse steaks over the charcoal grill for dinner (medium rare of course), and then sat around the fire pit smoking cigars, drinking beer, and just chatting.  It doesn't get any better than that!  It was a full moon, and the clouds scudding across the sky were breathtakingly beautiful in the moon light.  I took this picture with my iPhone, which kinda sucks, but Jeff got some really great pictures with his professional Canon camera.  I can't wait to see how his turned out.  Gallery quality, I would guess.  Alas, we had to come back yesterday so Jeff could pick up his girlfriend, Christine, at Logan Airport on her flight back from Paris.  (Most of our family have been world travelers lately going hither and yon!)  Short as it was, we still had a great visit to the farm.  It's always a relaxing, wonderful experience when we can get there.  We plan to head back up for the Fourth of July weekend.  Can't wait!

On my way to the farm, I went back to the Farber Monday morning to see if I had recovered from my cold and to check my numbers after a week without Revlimid.  It was all good.  My pathology results from last month still show no signs of monoclonal gammopathy (yay!).  The antibiotic prescription they gave me last week worked fine, so I was back in good health.  Interestingly, my white blood cell count (WBC) and hematocrit (HCT) both jumped back up into the normal range!  Wow!  My WBC was 4.1 and HCT was 38.8.  While my continued use of iron supplements has helped these numbers a bit, the most logical explanation for the big jump is that my week off the Rev really helped.  I have been worried about my continued anemia over the past several years, but these latest results give me some encouragement.  First, I think the iron supplements are slowly restoring my blood counts to normal.  And second, I think the Revlimid is responsible for a lot of my lower counts, even though I am taking the minimum dose of 5 mg/day.  I did forget to take my Rev to the farm, so I got an extra 2 days off.  My bad!  Anyway, I am now back on my normal daily regimen of Rev.  I also turned in a 24-hour urine sample on Monday, the first time since January.  The results have now come back showing no monoclonal protein in my urine (another yay!).  I couldn't be happier with my progress so far.  I consider myself extremely lucky.

I finally got my immunization shots, which have been put off for months because of a cold or forgetfulness or whatever.  Anyway, I got a full dose of five shots on Monday, three in my left arm and two in my right.  I felt like a pin cushion.  Here's what I got:  Polio, Pneumococcal, Hepatitis A&B, Hib, and DTaP.  The Hib is some kind of anti-meningitis vaccine, and the DTaP is the typical diphtheria, tetanus, pertussis vaccine given to all 2-year olds.  My new immune system is now two years old, so I guess it's time for me to get all these baby vaccines taken care of.  By the way, Heather, my favorite nurse, gave me the shots, and they didn't hurt at all, even though she hates giving them.  Only later in the day when I was up at the farm did I notice that my arms ached a bit.  No big deal.  I'm really used to being poked, prodded, and stuck by now.

Wednesday, May 7, 2014

Home Again

We got back Sunday from a whirlwind vacation to Ireland and Barcelona, Spain.  It was a great trip, and it was wonderful to spend time with two of our kids and their significant others.  It's too bad the whole family couldn't have been there, but alas, they all now have their own lives and commitments.

As you may know, I have Irish heritage, with my known paternal family roots going back to Co. Tipperary in the early 1800s.  However, I have not found any known relatives using conventional genealogy research.  Therefore, I have resorted to DNA testing to see if I can find some ancestral roots that way.  From my y-chromosome DNA results, I discovered that I am a descendant of the progenitors of the O'Brien clan in Ireland, with roots extending back to the time of Brian Boru, who was High King of Ireland a thousand years ago.  This year, Ireland is celebrating Brian Boru's victory at the Battle of Clontarf in 1014, which freed Ireland from the Viking invaders.


Rock of Cashel, Co. Tipperary, Ireland
One stop on our journey was the Dromoland Castle in Co. Clare, which used to be Brian Boru's castle. We then spent two days celebrating Holly's friend's wonderful Irish wedding.  After the wedding, we drove to the famous Rock of Cashel.  When we got there, they were celebrating the coronation of Brian Boru as the King of the Munsters, before he became High King.  It was a happy coincidence for Jeff and me to see this reenactment of a ritual that may have happened to an ancient ancestor of ours.

 Sagrada Familia, Barcelona
After touring Dublin, Holly & Ryan, Gretchen & I flew to Barcelona for 4 nights.  What a great city that is!  We had a chance to see the famous Sagrada Familia, the unfinished basilica by the famous architect, Gaudi. We also spent many hours walking around the old city with its Gothic architecture and narrow streets.  I was pleasantly surprised that I had plenty of energy for all this walking and my bum knee didn't bother me at all!  We ate well, and the tapas were delicious.  After a wonderful holiday, we all headed for home on Sunday.

After a short night's sleep, I went into the Farber on Monday for my monthly checkup.  Everything is still fine.  My iron levels are still low but are improving gradually.  Unfortunately, I picked up a cold while in Europe, so I still had some sinus and chest congestion on Monday.  Since the Revlimid inhibits the immune system, Mary and Muriel decided that I needed to stop taking the Rev for a week and gave me an antibiotic prescription to keep me from getting a secondary infection.  I have to go back next Monday to check my numbers again, and if I'm back to normal, I will go back on the Rev.  I still need to take some immunization shots, but they postponed them until next week as well.  Other than that, all is good.

Wednesday, April 23, 2014

Jet Setting

Tonight Gretchen and I are flying off to Dublin, Ireland to attend a wedding on Saturday.  Son Jeff and his girlfriend Christine are joining us on the flight over.  We will then drive from Dublin to Shannon tomorrow to pick up daughter Holly and her boyfriend Ryan, who will be coming in from San Francisco.

The bride is one of Holly's childhood friends.  The wedding will be in a quaint resort town called Coolbawn Quay, in Co. Tipperary, not far from where my paternal ancestors lived.  All of us will get in some touring of Ireland both before and after the wedding.  From there, Jeff and Christine are headed off to Turkey, while the rest of us go on to Barcelona, Spain for a few days before returning home on May 4.  We're all really excited about this trip!

This is our first major trip since Gretchen's accident, so we will have to take it a bit easy.  Despite my MM and her head injury, we are both fortunate to be able to travel and see the world.  We want to get as much of this in as we can while we are still able.

Needless to say, I won't updating this blog until I get back.  My next visit to the Farber is on Monday, May 5, so I should have some updated news to report then.  

Our house is going back on the market today.  We have hired a "stager" to change things around to make the house "pop".  This will all occur while we are away, so the house will have a new look when we get back home.  We're glad to have the house shown in our absence.  It's a real pain to have to keep everything in show condition while trying to live a normal life.  Hopefully, we'll get some nibbles while we are traveling.