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Wednesday, January 24, 2018

Amazing Trip

Here I am posting barely a month removed after my last post.  Will wonders never cease?  I'm pinching myself to see if i'm really doing this.
Bangkok Temple of Dawn

We just returned last week from our Viking River Cruise in Southeast Asia.  It was the trip of a lifetime for us!  We started with an amazing 3-day pre-cruise add-on to Bangkok, Thailand, where we took a long boat ride on the Chao Phraya river and canals, visited the Siamese Royal Palace ("the King and I"), and celebrated New Year's Eve watching dazzling fireworks over the river from our window in the Shangri-La Hotel.  Oh yes, and we enjoyed some delicious Thai food there too.  Yum!

We then flew to Saigon (Ho Chi Minh City), Vietnam, where we stayed at the opulent Reverie Hotel for 3 nights.  While there, we visited the famous Cu Chi tunnels, one of the places from which the Viet Cong launched the Tet Offensive in 1968.

American tank at Cu Chi
 That was a difficult experience for me, because that area was in the Iron Triangle, where my brother, Michael, endured some of the heaviest fighting of the war as a tank gunner during that time.  My heart sank when I saw the burned out shell of an American tank on display there.  You can imagine that I had very mixed feelings about all of this.  Nevertheless, it was heartening to see the welcoming friendliness of the Vietnamese people and the Westernized culture that has pervaded Vietnam since that time.  And American dollars were gladly accepted.

We then boarded our river boat, the Viking Mekong, for our 7-day voyage up the beautiful Mekong River.  It was not a typical Viking long boat, as it only carried 56 passengers.  While the staterooms were small, it had a beautiful sun deck where we could leisurely view the passing boats, villages, and rice paddies while sipping a refreshing adult beverage (or two).  The meals onboard were fantastic, always featuring some of the local cuisine.  It was also a treat to spend time with Bahar and Kathryn, our surprise shipmates on this tour.
Royal Palace in Phnom Penh

On the third day, we docked in Phnom Penh, the capital of Cambodia, which is a surprisingly modern city.  We toured the city by pedicab and visited the beautiful Royal Palace and Buddhist temples.  A sobering part of the trip was a visit to one of the infamous Killing Fields of Pol Pot's murderous regime.
Sunset at Kampong Cham

We then resumed our voyage up the Mekong river to Kampong Cham, Cambodia, where we visited more beautiful temples and received a blessing from Buddhist monks.

From there, we took buses to Siem Reap, Cambodia, for a 3-night stay at the elegant Sofitel Angkor resort.  The next day was a highlight of the trip, as we visited the famous Angkor Wat ruins.

Angkor Wat
While Angkor Wat was breathtakingly beautiful, we also visited several other amazing temples in the Siem Reap area, including Angkor Tom and Ta Prohm.  Our elephant ride at Angkor Tom was a fun experience.  Ta Prohm, with its ancient walls encased in tree roots, became famous as the setting for the 2001 movie,  "Lara Croft: Tomb Raider".
Our adopted "son", Song

While relaxing at the resort in Siem Reap, we met a waiter at the pool bar, Song.  He became quite attached to us.  He had a rough childhood without loving parents, and he asked us if we would be his "mom" and "dad".  We said yes, so we now have a new son!  We've been keeping in touch with him since we left.  Who knows?  Maybe we'll go back to Cambodia to visit him sometime.
Hanoi Temple of Literature

From Siem Reap, we flew to Hanoi, Vietnam for the last two days of our journey.  There we toured the Old Quarter, visited the Hanoi Hilton prison, and saw the Ho Chi Minh mausoleum before heading back home.  What a great adventure!

We made a lot of good friends on this trip and are left with some wonderful memories.  We also took quite a few pictures along the way.  I have posted a bunch of them on Shutterfly.  If you are interested, you can access them at:

After this trip, we are definitely fans of Viking Cruises.  We're already looking ahead to our next Viking adventure.  Will it be Egypt? Japan? China?  All three?  We'd also like to work in an African safari someday soon.  We can't just sit around and wait to get older and sicker and feebler.  There's a whole world out there for us to keep exploring while we still can.

After our return home on January 15, Gretchen became ill.  After a trip to the hospital, we found that she has pneumonia and bronchitis!  After taking antibiotics, she has been slowly recovering, but she still doesn't feel back to normal.  Thank goodness we came home when we did!

I also had my monthly visit to Dana Farber last week.  My numbers are still pretty good, although not as good as last month.  Nurse Mary wants me to have an echocardiogram and EKG as a precautionary measure.  Maybe all this traveling has taken a little out of both of us.  I'm still feeling great though!

I hope to update this blog again in a somewhat timely manner, although I'm not making any promises.

Friday, December 15, 2017

Is Anybody Still Listening?

I was somewhat relieved to discover that my blog account has not been mothballed due to my long absence.  It's been seven months since my last update.  My how time flies!  So, here I am, still alive and kicking.  I've had a lot of encouragement over the past few months to update my blog, but somehow I have kept procrastinating.  I have finally overcome whatever mental or writer's block has kept me away.  There's been a lot of water under the bridge or over the dam since then, but I promise not to bore you with too many details.

On the Multiple Myeloma front, I am pleased and grateful to report that I am still in remission.  It has been almost 6 1/2 years since my initial diagnosis.  At that time, expected life expectancies were about 5-7 years.  By that reckoning, my time should be about up by now.  But I was fortunate to find myself at the vanguard of the new novel therapies which have transformed the MM landscape and extended survival times.  While I have no illusions that this can go on indefinitely, I feel pretty good about my prospects right now.

I seem to be healthy in most other respects.  My blood counts and chemistry numbers are mostly in the normal range, except for my white blood cell and neutrophil counts.  These are normally suppressed due to my Revlimid maintenance therapy, which is why I have to have them checked monthly to make sure they don't drop too low.

Oh yes, and my bilirubin generally runs high, also due to the Revlimid.  Bilirubin is a liver-related number, with a normal range below 1.2.  Mine usually runs about 1.7, but all my other liver-related numbers have been in the normal range.   A couple of months ago, my bilirubin jumped up to 2.5. Oops.  Since it relates to liver function, I thought that maybe I had been imbibing too many Blue Moons (my favorite beer), so I decided to cut back on my intake.  The next month, the number dropped back to 1.7, and then this past Monday, it fell further to 1.5, well within my normal range.  I don't know if my drinking had anything to do with the elevated number, but I think I will continue to monitor my Blue Moon consumption going forward.

On other health matters, I still have issues with skin cancer.  I continue to pay the price for my youthful indiscretions of willfully basking, baking and broiling my lily white Irish skin in the sun. I recently had three more squamous cell carcinomas diagnosed.  The one on my cheek was surgically removed two weeks ago, and the other two on my chest and back were removed by freezing with liquid nitrogen.  Unfortunately, I just found out that the dermatologist didn't get all of the one on my cheek, so another surgery is necessary.  I'm kicking myself for having this done locally in Newburyport rather than going into Boston as I did last March.  Now I have to go back into Brigham and Women's Hospital in Boston and have Dr. Schmults do a Mohs surgery to get the rest of it, which I should have done in the first place.  Live and learn.  Sigh!

Thanksgiving was a really special time this year.  We had the whole family here for a change.  Brian, Pam, and Logan drove up from New Jersey, Holly and Ryan flew in from San Francisco, Jason came from Hartford, and Jeff and Christine came along with her mother and sister.  As an added bonus, Gretchen's God daughter, Stephanie, joined us from Beacon, New York.  We had a delicious turkey dinner with all the fixin's for the 13 of us.  I must modestly admit that I did an admirable job roasting the 20 pound turkey on the grill.  Gretchen did a great job with the spinach pie and other goodies.  I have a lot to be thankful for!  Who knows how many more times we can gather the whole clan together again?

Now for the big news.  Considering our advancing ages and health issues, we recently decided to seize the day and travel while we both can.  Fortunately, Gretchen has been recovering nicely from her surgeries, so she should be able to manage the stress of an extended vacation.  We have wanted to travel to Southeast Asia for a long time now, so in September, I tried to find a Viking Cruise in that region.  Almost everything was sold out for the entire winter season, but there was only one slot available for the entire season that I grabbed immediately.  On December 28, Gretchen and I are headed to Southeast Asia for a Viking Cruise on the Mekong River!  Our itinerary includes 3 nights in Bangkok, then we fly to Saigon (Ho Chi Minh City) for 3 nights.  We then board a river boat to cruise up the Mekong River for the next 7 days, stopping in various Vietnamese and Cambodian villages, including Phnom Penh.  We then go by bus to Siem Reap, where we spend the next 3 days exploring the Angkor Wat area.  Then we fly to Hanoi to spend the last 3 days of our trip.  We fly back to Boston on January 15.  What an exciting adventure this should be!

Now for the kicker.  I had a birthday lunch with best friend and business partner, Bahar, last week.  (Yes, I just turned 75.)  We both talked about our travel plans, and Bahar said he and Katherine are headed to South Vietnam after Christmas.  Really?  As it turns out, they are taking the exact same Viking Mekong River Cruise that we are!  Almost as astounding, their stateroom is #307, right next to ours #305.  Now what are the chances of that?  Come on, really!  Bahar and I have shared many coincidental experiences in our lives, such as our sons, Brian and Jason, being born a day apart in the same hospital with the same doctor, with their mothers sharing the same room.  That was pretty weird.  But this one takes the cake!  This should be a lot of fun!

Maybe I'll update this blog when we return.  But then again, with my history, maybe I won't.

Happy Holidays!!!

Saturday, May 13, 2017

Long Absence

It has been so long since I last posted that I almost forgot how to find this blog site.  I could say that it has been too long, but that would grossly understate the situation.  Anyway, like a Phoenix, I have arisen from the ashes.

Early arrivals at our tent
The MMRF Boston 5K Run/walk was held at Carson Beach in South Boston on April 30.  This was our second year for this fundraising event.  Team Epic for Bill raised over $8,500 for Multiple Myeloma research!  While this was a little short of last year's total, it was a very successful fundraiser, and I'm very happy and grateful that so many people contributed to this worthy cause.  We had 25 participants show up to walk or run with us that day.  The weather was pretty good.  It didn't rain, but it was somewhat chilly.  I'm very proud of myself.  I walked the course in 1 hour 8 minutes, which beat my last year's time by 2 minutes.  Who knows how great I might be next year?

Team Epic for Bill
The Boston 5K event raised over $640,000 for the MMRF this year.  Pam's sister, Michelle, provided us all with tee shirts.  The bright green color allowed us all to identify each other easily in the crowd.  After the event, we celebrated by gathering at Coppersmiths in South Boston, where we enjoyed a delightful brunch with a fantastic Bloody Mary bar!  It was a wonderful day!  By the way, the dog in the team picture was not an official entrant.  ;-)

Brian, Pam, and Logan at Half Marathon

 Last weekend, I went to Pennsylvania to watch Brian and Pam run in the Pittsburgh half marathon.  I stayed with my brother, Terry, and his wife, Sherry, which was delightful.  We also got together with my sister-in-law, Kathy, and my grand nephews, Chase and Lincoln, while there.  It was a nice family reunion, which we don't get to do often enough. I also got to spend some quality time with my grandson, Logan, which was a treat.

As to other things going on, Gretchen is finally recovering remarkably well from her esophagus surgery.  It's been a long time, but her appetite finally is back and she has stopped losing weight.  It's been a tough time with all the medical events, but I think things are starting to settle down.

As for me, I'm still doing amazingly well.  I had a bone marrow biopsy in March which showed that the myeloma is still in remission, thank goodness.  All my other blood tests are coming back normal, so it's all good.  I've been very lucky so far.

As for my diagnosis with squamous cell carcinoma, I got some weird suggestions from my local dermatologists, so I decided to go to Dana Farber for expert advice.  I found an amazing specialist, Dr. Chrisalyne Schmults, who agreed to do Mohs surgery on my forehead.  She did the surgery on March 15, and she got it all on the first try.  I've healed up well and you can't even notice the scar.  I can't praise Dana Farber enough!  Thank goodness they are there for me.

I'm not sure when I will update this site next, but I hope it will be sooner rather than later.

Thursday, February 2, 2017

I'm Still Here

Hello all!  I used to update this blog frequently.  In those halcyon days of yore, I used to imagine that I had a legion of devoted followers, all hanging on whatever pearls of wit and wisdom I might dispense in my next blog entry.  Alas, those days have passed, and I'm not quite sure why.  I seem to have lost a bit of my creative edge.  Some of it is due to the fact that I have been fortunate to have been in remission for a long time now, so there isn't a lot of MM news for me to share these days.  I now assume that my imagined legion of followers has been reduced to a few desperate souls who might occasionally check to see if I am still alive.  I apologize to all of you whom I may have disappointed by my prolonged absence.

All right, so here I am to give you remaining devoted stragglers an update on what's been going on lately.  Actually it's been quite a bit.

View from our balcony
First, let me tell you about our fabulous Christmas vacation in Puerto Rico.  Our villa on the ocean was fantastic!  We had everything we could have wanted:  great weather, pool, beach, snorkeling, paddle boarding, surfing, deep sea fishing, frisbee, great restaurants nearby, fresh fish cooked at the villa, and most of all, a wonderful family gathering.  There were 13 of us, including all our kids and significant others (except Brian, Pam and Logan) and Gretchen's brother John and his family.  We all missed the passing of our beloved sister-in-law, Kathy, but it was a wonderful getaway that helped us all from mourning her passing at home with all the painful memories.

Beautiful sunsets
I think it would have been sad to have stayed at home and dealt with the emptiness of her absence with all the Christmas memories and familiar surroundings to constantly remind us of what we had lost.  This way, we were able to mourn appropriately, as we did, but still find some joy and escape during this difficult time.  Knowing Kathy, I think she would have approved.  I can see her smiling now.

Gretchen did well during this vacation, though she is still recovering from her esophagus surgery in August.  It has been a slow process.  On January 13, she went in to Beth Israel to have her esophagus dilated by Dr. Michael Kent for the third time.  That seemed to help, as she's able to keep things down better.  She is just now starting to eat more solid foods to supplement her smoothies and protein drinks.

Just to complicate things, she had gall bladder problems and it needed to be removed.  Serendipitously, the best GI surgeon at Beth Israel is Tara Kent, wife of Michael.  She scheduled the surgery for January 31.  She made sure that the entire team, including Michael, was there to help if there were any issues.  Fortunately, the laparoscopic surgery went well with no complications.  Gretchen came home the same day.  She is now home recovering and seems to be doing well.  Let's hope that she will feel a lot better soon.

We are so grateful to be near Boston where we have access to top specialists providing unparalleled medical care.  We learned something interesting about Dr. Tara Kent while there.  One of the nurses told us that when the Boston Marathon bombing happened, all the Operating Rooms were filled with patients, but they had more victims coming in.  They then set up an improvised OR in the recovery area right where Gretchen was, and this nurse helped as Tara attended many of the wounded coming in.  The nurse said that Tara was absolutely incredible as she helped save peoples lives in this improvised environment.  What an amazing story!  How lucky are we to have these people in our lives!

Well, what about me?  I know you are all really anxious to know.  Anyway, I had my colonoscopy and endoscopy last month as I reported.  I got the biopsy results back which were favorable.  My Barrett's esophagus is minor with no dysplasia, so I don't have to go back for another 3 years to check on it.  As for my colonoscopy, no polyps, so I'm to come back in 10 years!  Yeah right, like I'm even going to be here in 10 years.  If I am, and I have dementia, I implore any of you out there to please shoot me. With Donald Trump as president, there should be easy access to a murder weapon!  And I forgive you in advance.

As for my MM progress, my latest visit was great!  I'm still in remission and my numbers look good. I have an appointment next month with the hematologist, Dr. Connors, to check on my iron level numbers to see why I tend to have anemia.  We'll see.  So far, my red blood cell counts are fine since my last iron infusion last fall.

My latest issue is with a growth on my forehead.  I've had this for a about 3 months now.  I went to my PCP and he thought it was an infection.  I then went to see my dermatologist in December and she thought it was an inflamed cyst.  She gave me an antibiotic, but it didn't help.  I finally went back to Dr. Stewart last week to have the cyst lanced.  She thought it looked like a normal cyst, but she took a biopsy to check just in case.  Guess what?  The biopsy came back today and it is a squamous cell carcinoma!  That's just great.  What else do we need right now to further complicate our lives, huh?

Anyway, she referred me to a plastic surgeon to take care of it so I won't look like the Frankenstein monster afterwards, I hope.  I have an appointment next week to schedule the surgery.  I am now paying the price for all those years of basking in the sun with my lilly-white Irish skin.  Luck of the Irish, right?

Sunday, December 18, 2016

Stupid is as Stupid Does

I'm feeling particularly stupid tonight.  Duh!  With good reason, as you are about to learn.  I will share with you the embarrassment of my actions this evening.  As a prologue, I'm sure we haven't had a working DVD player for quite some time, since we don't play DVDs these days any more.  I assumed that we had disposed of our old DVD player a while ago.  Gretchen has a DVD that she has wanted to play for a while now.  So I recently ordered a Sony BluRay player from Amazon, which was sitting unopened in our media cabinet.  She has a guest visiting this evening, and they both wanted to watch the aforementioned DVD.  She asked if I could hook up the new player.  I obligingly said yes.

Okay, so I unpacked the box and hooked it up to a power outlet.  So far, so good.  I then went to attach the HDMI cable to the TV.  I assumed I had an extra HDMI outlet on the TV, because I only use HDMI1 for the cable TV and HDMI2 for the Apple TV.  I never use HDMI3.  I thought it was available.  I was surprised to find that there was already a cable attached to the HDMI3 input.  Oh well, I didn't know why that was there, so I detached it and added the new DVD player.  I put the new DVD player over another box in the cabinet which I couldn't remember what it was for.  That box looked strangely similar to the one I just bought, but I didn't think much about it at the time.  I then fired up the player and opened the DVD tray with the remote.  To my surprise, two trays opened!  In the bottom tray was a DVD.  What is this?  Is this a double DVD player?  What is that DVD doing there in the bottom tray?

Upon closer inspection, the bottom box was identical to the new box on top of it!  Both were Sony BluRay DVD players.  And the bottom one had the DVD already inserted that Gretchen wanted to watch.  This was a crushing blow!  I can't tell you how humiliating it was for me to admit to my mistake publicly as I removed the now superfluous new DVD player and reattached the original.  How the Hell could this have happened?  In my defense, I will say that my at least my tastes have not changed, as I bought the exact same DVD player twice in a row.  It's a rather meager defense, I know.

What to make of all this?  I feel like my brain has gradually turned to mush.  Is this early onset Alzheimers?  Oh crap.. maybe not so early?  The fact of the matter is that I often can't remember shit!  Gretchen will sometimes mention something that I presumably said or did, some of them a long time ago.  Really?  I don't remember that.  Fuck!  I'm desperately trying to hang on to my brain and retain whatever memories I can.  In the end, other than your loved ones, all you really have is your memories.  Your life is defined by your memories.  If those leave you, who are you?  Why are you even here?  If I get to that state, somebody shoot me, please!  Enough of this philosophical bullshit.

It has been a particularly long time since I updated this blog.  One of the reasons is that not a lot has happened with my MM situation.  The other is that although a lot has been going on with Gretchen, she doesn't want me to be too personally intrusive in blogging about her situation.

OK, let's start with me.  I had a combined colonoscopy/endoscopy last Monday.  The good news is that the colonoscopy was fine without any polyps.  He said I don't need to go back for another 10 years.  Are you kidding?  If I'm still around then, I don't think that will be high on my list. The endoscopy was a little more complicated.  I have a (supposedly) mild case of Barrett's esophagus, along with some inflammation in my stomach, which might explain my tendency for anemia.  He took some biopsies and put me back on Omeprazole, which I haven't been taking for a long time.  I have a followup with him in early January.  I'm assuming that everything will be OK.

Gretchen is still struggling from her esophagus surgery.  It's been 4 1/2 months, and she still has a problem eating solid foods.  She eats a lot of yogurt, Enshure, and smoothies to keep her calories and protein levels up.  She is slowly improving, but the latest glitch is that she has gall stones.  She is now scheduled to have her gall bladder out on January 17.  In the meantime, that seems to have affected her sense of taste, her feeling full in her stomach, and her continued nausea, all common symptoms of gall bladder problems which doesn't help her appetite for solid foods.  This hasn't been a lot of fun for her (or me either).

Our beloved sister-in-law, Kathy, passed from lung cancer in July.  This is a very sad time for us.  Our family decided that this would be a good time to get away, so we are spending Christmas in Puerto Rico!  John and his family along with all of us (except Brian, Pam, who will stay at home for Christmas with Logan), will be there, 13 of us in all!  We have reserved a villa on the beach as show below.  Una mas cerveza por favor!

Tuesday, October 25, 2016


An American tourist visiting London tries to cross the street.  Instinctively, he looks to the left first.  Finding it clear, he steps off the curb, looks to the right, and is immediately flattened by one of those double-decker buses they have over there.  Whoops!

I've been feeling a little bit like that lately.  For a long time now, my multiple myeloma journey has been sailing along on cruise control.  My numbers have been fine with no evidence of monoclonal gammopathy. I am now on Cycle 54 of my Revlimid maintenance therapy.  The only glitch was a reduced iron level in 2014 causing some anemia.  I received an iron infusion which remedied the problem.  Then this happened again this year, which I mentioned in my last post.  I received another iron infusion in September, which has again boosted my red blood cell counts back up to normal.  So all is good, right?

As I metaphorically look to the left, I see an undisturbed 4 plus years of my MM in complete remission.  The road is clear.  However, as I step off the curb and look to the right, Bam!  The double-decker bus turns out to be the spectre of Myelodysplastic Syndrome (MDS).  MDS is a form of blood cancer where the bone marrow doesn't produce enough healthy blood cells.  This is a serious blood disorder which has a high risk of becoming Acute Myeloid Leukemia (AML), an even more serious blood cancer.  It has long been known that MM patients are at a heightened risk for developing MDS/AML, possibly due to treatment-related effects of the chemotherapy (such as the melphalin I had for my ASCT).

In August, Paul informed me that he had ordered a blood test genetic profile for me, which revealed that I have some genetic mutations that predispose me to develop MDS.  While my numbers show that I don't (yet) have MDS, he put me on Vitamin B1 and folic acid as a precaution.  He also referred me for a consult with Dr. David Steensma at the Farber, who specializes in MDS.

I started to do some research (surprise) and was a bit nonplussed to discover from the gene profiling pathology report that one of the genetic mutations I have is ASXL1.  For patients with MDS, the ASXL1 oncogene is associated with high-risk aggressive disease with poor clinical outcomes.  Gulp!  I also learned that one of the first signs of MDS is often anemia.  Could my iron deficiency have something to do with this?

So I was understandably a bit nervous when I met with Dr Steensma today.  He was great!  He immediately put me at ease and allayed some of my concerns.  For one thing, he assured me that my recent history of iron deficiency is completely unrelated to MDS.  MDS-related anemia is an entirely different mechanism.  That's good!  Also, since my CBC blood test results are almost completely normal, there is no sign of impending MDS.  He likened my condition to MGUS, a precursor asymptomatic condition to MM, which has a small (about 1%) annual chance of progressing to full MM.  In my case, since I have two oncogenes identified (the second one is SH2B3, another MDS predisposition gene), I may have a somewhat greater chance of progressing to MDS, but he thinks it is still pretty small.

I told him that with my bad genetics, if I do contract MDS, I'm fucked.  Is there anything available to forestall getting MDS with my predisposition oncogenes?  He said there is some recent research being done on this, and that there will soon be a clinical trial to see if administering some chemo to at-risk patients who have been pretreated for another blood disease could prevent the onset of MDS.  I intend to follow up on this research.

This was a great relief!  All I have to do is continue to monitor my blood counts.  If I become anemic again due to iron deficiency, it's not MDS.  If it's not due to iron deficiency, then I need to explore further.  In the meantime, I plan to look both ways before stepping off the curb!

I've scheduled a colonoscopy/endoscopy for next month to see if there might be a reason I'm losing iron.  I sure hope it's not colon cancer!

As for the other patient in our household, Gretchen is slowly recovering from her recent esophagectomy.  It has not been an easy recovery.  She has had to go back to Dr. Kent twice to have her esophagus dilated.  While this definitely improved things, she is still having trouble eating solid foods, so she may have to go back again for another dilation.  She also has a lot of nausea and is really tired, but she was told that this is all pretty normal.  We just hope that she gets through this phase sooner rather than later.

Saturday, September 3, 2016

Many Moons

It's been many moons since I last blogged.  Actually, there has been only one full moon since my last blog...August 18th, but there have been two new moons...August 2 and September 1.  So maybe it has been two moons since I last blogged.  Whatever.  Who's counting?  Anyway, it's been a really tough month, so I haven't been up to blogging about it until now.

I'm very sorry to report that our sister-in-law, Kathy, succumbed to lung cancer.  Her passing was a devastating shock to all of us who loved her.  It's almost inconceivable that this vibrant, beautiful, amazing woman was cut down by this devastating disease at such an early age.  Our whole family is reeling from this.  She was loved by so many and will be missed by so many.  It doesn't seem fair, but I guess life isn't always fair.  We will mourn her forever.  She has left a deep hole in our hearts that will never heal.

As much as Gretchen doesn't want me to talk about her, I think I have to.  After this tragedy, Gretchen had to go in for an esophagectomy on August 5.  The surgery went well, although it was very complicated and took about ten hours.  Her recovery had a few speed bumps, including fluid in her lungs and two atrial fibrillations.  I have to say that The Beth Israel Deaconess staff were great!  Every problem was dealt with immediately, and she got wonderful care there.  Now she is home and gradually recovering.  The best news is that they got all the cancer, so she won't be needing any followup therapy!  Hooray!  She is feeling a little better every day.  She was on a feeding tube, but that got clogged, so she is trying to eat normally now with soft foods.  We see her surgeon, Dr. Kent, next Tuesday, so maybe he will decide to remove the feeding tube then.

I have to tell you about some of her experiences.  In the ICU, everyone was terrific.  After the ICU on the floor, however, it wasn't quite as good.  At one time, she was short of breath, and one of the young nurses told her to vizualize her really happiest place and to breathe deeply.  Gretchen, who is a psychoanalyst, was like, "Are you kidding me?"  She then referred to her and some of the other nurses there as "toddlers".  She complained to Holly about the "toddlers", but she didn't see any children around.  Holly checked the halls to see if there were any children that should have been in the children's ward, but found none.  She and we finally all realized that the term "toddlers" referred to all the nurses there that just didn't get it!  Now that she's home, she still talks dismissively about the "toddlers".  I don't think I will ever think of toddlers in the same sense again.  Gretchen may have been sick, but she is not stupid.  My father used to tell me that he did not suffer fools gladly.  Neither does Gretchen.  Good for her!

As for me, I met with Dr. Connors, the hematologist at the Farber.  Based  on my low iron count numbers, she recommended another iron infusion, which I will take on my next visit on September 12.  I'm still not sure why my iron count keeps dropping, but I plan to schedule a colonoscopy and an endoscopy soon to try to figure out what's going on.  Maybe there is another problem here that I don't know about. 

Thursday, July 28, 2016

Pushy People

You may have noticed that I haven't updated my blog in quite a while.  I apologize for that, but I do have a bit of an explanation.  This blog is supposed to be about me, but although things have been going well for me lately, they haven't been going so well for my sister-in-law, Kathy, or Gretchen.  Kathy has advanced lung cancer and Gretchen has esophageal cancer.  Gretchen goes in for surgery on August 5 for an esophagectomy, which hopefully will be curative.  I haven't said much in my blog about all of this because this blog is supposed to be about me, not Kathy or Gretchen, and I want to respect their privacy.  But I feel guilty blogging about me when my family is not doing so well.

Anyway, as for me, my latest Farber visit was still good.  I met with Paul Richardson on July 18, and he reassured me about several concerns I had about my reduced iron levels, elevated free light chain Lambda levels, and my ongoing GI issues.  (I try to keep track of all my critical blood test parameters and look for any trends that look abnormal.)  He said I'm doing fine and gave me good guidance on all of the above.  I always feel better after meeting with him.  Based on his suggestion, I'm going to meet with the hematologist in a couple of weeks to deal with my iron deficiency, but Paul assured me that it is unrelated to my MM.  That's comforting.  By the way, I just passed my 5th anniversary of my MM diagnosis on July 13, and I'm still here.  Yay!

Sunset at Cuttyhunk
I just spent the last four days sailing with my friend, Lew, on his 35-foot sailboat.  We left Sunday from South Dartmouth, MA for Edgartown, Martha's Vineyard.  It was a wonderful getaway for me.  We had a great time!  After two nights in Edgartown, we sailed to Cuttyhunk.  We grilled a delicious meal of blackfish on the boat Tuesday.  Here is a picture of the sunset that evening.  Yesterday we came home.  The company was awesome and the food was great, as usual!

After we got our mooring in Edgartown, we listened to a broadcast from another visitor looking for a mooring.  She was a very pushy woman.  She practically demanded that the harbor master find her a mooring.  From her accent, I guessed where she was from, but to avoid being labeled as politically incorrect, just think of a big city between Boston and Philadelphia.  ;-)  He tried to help her, but she kept stridently demanding more and more specifics about where he wanted her to go.  After each transmission, his response time got longer and longer, and all of us listening could sense his annoyance and frustration.  Lew and I were thinking that if we had come on to him like that, he might have told us to go moor somewhere else.

Speaking of pushy people, after listening to this interchange, I imagined a scenario where Donald Trump was arriving looking for a mooring at Edgartown.  Here is my speculated interchange:

DT:  Edgartown Harbor Master, this is the yacht Gargantuan, over.
HM:  Go ahead Gargantuan.
DT:  I want a mooring, and I want it now and it has to be really great.
HM:  How big is your boat?
DT:  It's really big.  It's friggin' huge.  You wouldn't even believe how big it is.
HM:  I don't know if we have a space big enough for you.
DT:  Look here.  I want you to clear out about 200 feet around the best mooring you have to make enough room for my really huge unbelievably beautiful yacht.
HM:  I don't think I can do that.
DT:  Do you know who you are talking to?  This is Donald Trump, the next President of the United States.  You'd better do that and do it now!  Just tell those people to move and if any of them are immigrants, tell them to go back to where they came from, especially if there are any Muslims.
HM:  I'm sorry, Mr. Trump, but that would not be appropriate.
DT:  Oh really?  Then I'll just buy this harbor right now.  And you know what?  You're fired!  I really love saying that!  You'll never get another job, not even to sweep the floor of the lobby in Trump Tower!  Believe me.  This harbor used to be great, but it's really gone downhill.  I will make this harbor great again!  Then I can invite my good friend, Putin, to come for a visit.

It's really sad for me to think that this yahoo really could be our next president.  Sigh!

Tuesday, May 31, 2016

Belated Update

Okay, it's May 31 and I haven't updated my blog since right after the amazing 5K event.  I didn't want to miss another opportunity to post in the month of May, so here goes.  This will be short, since there is not a lot of news about myself to post.  My visit to the Farber last week went well, as I still seem to be in remission, thank goodness.  However, as I posted last month, there are some indicators that bother me a bit.  I already mentioned the increase in my bone marrow biopsy plasma cell count from 6% to 8% over the last year, but there are a couple of other things that are beginning to bother me.

First of all, my red blood cell (RBC) counts are dropping.  My hematocrit (HCT) dropped from 45.9 to 41.2 since last month.  It's still above the minimum level of 37.1, but I don't like the trend.  It's been really high since my iron infusion about a year and a half ago, but it's going in the wrong direction now.  I had stopped taking iron pills since my last prescription ran out, but I'm now back on a daily dose to try to reverse this trend.  I also notice that I get tired more easily and am taking more mid-day naps.

Another alarm bell for me is that my light chain Kappa numbers have been steadily increasing over the last year.  Last April, they were at 17.2 mg/l, and this April they had climbed to 27.0.  The normal range maximum is 19.4.  As you may remember, I have IgA Kappa MM, so my Kappa count is of some interest to me.  I talked to Mary McKenney about this last week, but she seemed unconcerned. Really?  Hmmm.  I think with all this going on, I'm going to have a chat with Paul Richardson some time in the near future.  I'm not panicking about these things, but I'm keeping a close eye on them.

The latest issue of the Farber newsletter revealed that Paul Richardson received the MM Achievement Award at the 2nd World Congress on Controversies in MM, held in Paris on April 28.  The award was awarded jointly to Paul and Antonio Columbo of the University of Torino for "innovative research and translational clinical work that has contributed significantly to the development of new therapies and important progress in MM during the last decade".  That's my doc!

Wednesday, May 4, 2016

Race Day

Team Epic for Bill Tent

The night before the big MMRF 5K run/walk race, we were a bit nervous, as we were about $450 short of our fundraising goal of $10,000.  But our son, Jason, was a savior.  He drove up from Connecticut Saturday night and dumped donations on the kitchen table that he had collected from his co-workers that day at his restaurant, Joey Garlic.  It came to $602 in cash!  I was stunned.  It was overwhelming, as I fought back the tears.  Those donations put us over the top.  We had done it!  We all went to bed that night knowing that we had reached our goal.  It was so very satisfying.

Wally, the Green Monster
Sunday was the big day.  We all converged on Carson Beach in South Boston for the race by 7:00 am (yawn).  We were thrilled that we had our own tent for Team Epic for Bill.  These tents were only made available by the MMRF for their biggest fundraisers.  There were 105 teams registered for this event, and Team Epic for Bill was the 8th largest fundraising team!  I'm very happy and grateful for all the contributions we got from our supporters.

Pam's sister, Michelle, provided Team Epic for Bill tee shirts for all of us to wear.  What a nice surprise!  Now we could stand out among the multitudes.  Thank you so much, Michelle!

There were about 2,500 runners/walkers there, which beat the previous record of 2,100 last year.  They also raised a record $520,000 for this event, surpassing last year's previous record of $475,000.  This event keeps growing every year. 

Paul Richardson & dog
My oncologist, Paul Richardson, is the honorary chairman of this event, and he gave an inspirational talk before the race about the current status of multiple myeloma research.  Two new drugs have been approved by the FDA so far in 2016, after a record number of approvals last year.

Paul comes to this event every year, and he ran this year with his dog.  I saw him on the course, and he was having a very respectable time.  I met with him afterwards and he told me that I look really good.  I found that very encouraging.

Our team then congregated at the starting line for this event.  The serious runners went to the front, while us slackers who were only walking hung back at the end.  We had several good athletes on our team, including Pam's cousin, Sam Whatley, who finished 14th out of 743 runners with a time of 20:08!  Wow!  I talked with Sam at the brunch after the event, and he told me that when the going got rough during the race, he thought about me and what I went through with my stem cell transplant, and it gave him the strength to push on.  Oh my!

Many of the participants decided to walk with me, for which I was very grateful.  We started near the end of the line, after all the serious participants were on their way.  I have to say that it was a very special time for me having my family and close friends there supporting me and walking with me on that wonderful day.  There was a part of me that had wanted to run instead of walk, but my knee told me not to.  In retrospect, I'm glad, because I had a lot of my family and friends surrounding me as I walked the course.  I was elated.  Since we were near the end, my only goal was to finish before the clean-up truck came along to push me over the finish line.  I'm proud to say that I did.

 Afterwards, we hosted a brunch at the Coppersmith Restaurant in South Boston.  It was an awesome venue.  We had our own room with a great brunch menu.  Coppersmith was voted as the best place for Bloody Marys in Boston.  I had one, and I agree.  It was a great way to thank all the people who supported us in this effort.

This was one of the amazing events in my life.  I will never forget the overwhelming support from my family and friends.  Life is good!