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Tuesday, December 4, 2018

Sticker Shock

I've been a really lucky guy.  I have been in remission from multiple myeloma for over 6 years now.  One of reasons may be that I have been fortunate to be on a clinical trial that has provided me with continuing maintenance using the drug Revlimid on a daily basis free of charge over that time.  As you may know, Revlimid is an exorbitantly expensive drug, one of the most expensive in the world.  Lucky me.

Well, my luck is about to change.  I just found out yesterday at my monthly Dana Farber visit that the clinical trial I am on is terminating at the end of this month.  That means from now on, I will have to pay to continue with my Revlimid maintenance.  That's not good.

After my initial shock, I came back home to determine what financial effect that would have.  I am in the process of reviewing my Medicare Advantage Plan options for next year, and I have to make a decision by December 7.  I looked at my options on the Medicare website and added Revlimid to my list of drugs.  That was an eye opener!  Fortunately, I have an Advantage Plan.  If I only had Medicare Part B, I'd pay list price and my out-of-pocket cost of adding Revlimid would be about $300,000 next year!  Holy crap!  How could anyone other than the super rich ever afford that?  With the Advantage Plan, my expected out-of-pocket costs for Revlimid will be a "mere" $14,000 next year.  Whew!  I guess I should be happy, but I'm not.  That still comes to about $40 per day.

Celgene has the world by the balls and has consistently increased the price of Revlimid over the years to its currently stratospheric levels.  They have been able to do this by cleverly holding on to their patents by requiring monthly surveys to assess safety in using the drug (because it can cause birth defects).  Good for them...bad for us.

I don't think that I will qualify for any of the financial aid plans that are available out there, because I'm pretty sure I will be over the income limits.  I may look into this, but I'm not hopeful.

Now I have a decision to make.  Do I want to keep taking Revlimid at these prices and hope that I stay in remission?  How important is it that I continue to do this?  Maybe I will relapse even if I do continue to take it.  Maybe there is some other maintenance drug that is less expensive and might work.  Maybe I'm actually cured and don't need it any more.  Or maybe treatment options have improved so much over the last few years that even if I do relapse, my survival chances are good.  At what price to I decide take a chance by stopping the Revlimid?  These are important questions for me.


Today I scheduled an appointment with Dr. Richardson on December 11 to discuss these issues.  One of the things I want to discuss is how deep is my remission.  Some patients have reached a state of Mimimal Residual Disease (MRD), where less than one in a million cancer cells can be detected.  In that case, treatment options are much more flexible than with less stringent conditions.  In fact, there are some who say that a response of that level represents a "cure" for MM.  I was never tested for MRD (my remission was based on the standard test of less than one cancer cell in a thousand).  I had asked Paul last year about getting tested for MRD, but he told me it wasn't necessary since I was on a continuing maintenance protocol.  Well, I think that has now changed, right?.  I may ask him to test me for my level of remission.  If I can show that I am in MRD remission, why do I need to spend $14K a year on an exorbitantly expensive maintenance drug?  Inquiring minds want to know.

I'll update this blog once I have some answers.




Friday, August 17, 2018

Sword of Damocles

I'm going to start this off with a good story.  For the past seven years, I have been getting infusion therapy for my MM at Dana Farber, most recently with Zometa (bone building) infusions every 3 months.  For all this time, Heather has been my primary infusion nurse.  She has been a constant presence in my MM journey, and I have gotten to know and care for her.  She has been one of the constants in my Dana Farber life.  She is young and attractive and has had a constant progression of boyfriends over this time, none of whom have worked out very well.  We used to talk about how she was doing with her latest fling during my infusions.

Finally, she kissed a frog, Jeff, who turned out to be her prince!  She lives in Brookline and they got engaged last fall.  The wedding date was July 21.  Gretchen and I had recently been to a very nice Spanish tapas restaurant in Brookline, the Barcelona, so we thought a gift certificate for there would be a nice wedding gift.  In my July visit to the Farber, I left her with a card and the gift certificate.

Last Monday, I was at the Farber for my checkup and Zometa infusion.  Heather was my infusion nurse again, as I had hoped.  As I sat in the chair waiting, she walked in and asked, "Did you know that the Barcelona was where we had our first date?"  No, I didn't know that, but it was so perfect!  They had used our gift and gone there for dinner the Saturday before, and the staff, hearing their story, treated them to free dessert.  That was nice.  Some things just seem to work out.

Now what about this Sword of Damocles thing?  For those of you who don't know, the Sword of Damocles is a story about an ancient king who had an pandering admirer, Damocles, who envied his power and opulence.  The king offered to exchange places with him for one day, so he could taste that fortune firsthand.  Damocles quickly accepted, but as he sat on the throne, the king arranged that a huge sword hung above the throne held only by a single horses hair.  Realizing that with great power comes great danger, Damocles quickly relented the throne.  

In today's world, the Sword of Damocles is used more generally to denote the sense of foreboding engendered by a precarious situation, especially one in which the onset of tragedy is restrained only by a delicate trigger or chance.

I've been living under the precarious shadow of a potential relapse now for over seven years.  I've been dealing with this on a month to month basis for a long time now.  Every month, my blood test numbers have been coming back positive, which is great!  Only that delicate horse hair has kept the sword at bay.

The question is how have I been dealing with this.  I have not been consumed by a sense of foreboding, as Damocles was, but why not?  Aretha Franklin died today at an age of 76.  She was a legend and left an enormous legacy.  I am 75 years old now, and if that single horse hair should break sometime soon, what would I leave as a legacy?  That bothers me more than the thought of my mortality.  Am I to leave this world as a better place?  Have I done enough to compensate for my sins along the way?  I don't know.

When that sword finally falls, as it must, can I hold my head high and say, "I tried, I really did"?

Tuesday, March 20, 2018

Habitat Trip

Last weekend, we attended a birthday party for one of our friends' daughter, Annabella.  She was a lovely young lady celebrating her 6th birthday.  Now it's my turn.  Today is the 6th anniversary of the stem cell transplant that gave me my new immune system!   I call it my "second birthday".  Happy Birthday to me!  (I've decided to forego the cake and candles.)  Since that day, my new immune system has served me very well.  Today I was at Dana Farber and got confirmation that I am still in remission from my Multiple Myeloma.  I am a very lucky man.

Team Epic for Bill
One of the reasons that I am doing so well is because of the extensive research conducted on finding a cure for MM.  The Multiple Myeloma Research Foundation (MMRF) has been instrumental in bringing many new therapies to bear on MM.  Two years ago, my daughter-in-law, Pam, started "Team Epic for Bill" as a fundraiser for the MMRF Team for Cures 5K Run/Walk event in Boston.  We were fortunate to raise over $10,000 each year, and it has been a wonderful event.  This year, we are raising funds again for this event, which will be held at Carson Beach, South Boston on April 29, 2018.  I invite you to come run or walk with us that day.  If not, I would appreciate any donation you could make to this worthy cause.  Please check out my website at  https://walkrun.themmrf.org/boston18/BillOHalloran.  Thank you in advance.

As you probably know, I have been volunteering with the Merrimack Valley Habitat for Humanity (MVHFH) In Lawrence, MA for the past 3 years or so.  So far, I've been involved in four building projects, most recently on new duplex housing for low-income families.  It has been very rewarding, as well as a great learning experience.  I have worked on various aspects of house construction, from framing to flooring to sheetrock installation and mudding to insulating to vinyl siding to painting, and finally, to plumbing.  For the last year, I have been mostly doing PVC drains and vents, water and heating components, and especially heat and hot water boiler installations.  It's kind of amusing that I am now pigeon-holed as a "plumber", since plumbing was one of the things I hated the most when working on my own house!  Go figure.  Anyway, I'm having fun.

Two weeks ago, I had the privilege to visit the Dominican Republic for a week with some of my compatriots from the MVHFH to help build houses in that country.  We spent Saturday night in the capital, Santo Domingo, and then took an interesting walking tour of the Old Town the next morning.

Group picture in Santo Domingo
We then took a 4-hour bus ride (driven by a kamikaze driver with a death wish) west of the capital to San Juan de la Maguana, which was out base of operations for the next 5 days.  Those in the front of the bus compared it to a theme park thrill ride.  I was in the back, so I tried to sleep.

Ready to load the mixer
Monday we visited a cement factory, where we spent the day building concrete slabs, which serve as wall components for many of the low-income houses that are built there.  As you can see from the picture, Randy and I were hard at work shoveling sand and gravel into the cement mixer.  That was my job for the day.  Actually, this picture was taken before we even started, which may explain why I'm smiling.  It was hard but satisfying work.

The building process is interesting.  Most of the Habitat houses are only about 800-900 square feet with 3 or 4 small rooms. House walls are constructed from these pre-formed concrete slabs, which are slid into aluminum upright channels to hold them in place.  Once the concrete foundation is poured, it only takes a day or two to complete the walls.  The roofs of these minimal houses are usually metal.

Peter ready to shovel concrete
Tuesday was our hardest day, which involved pouring a concrete roof on a cinder block house.  This process was amazing.  The concrete was mixed on the ground and then poured onto a wooden slab.  Two people then shoveled it up to an intermediate platform, and from there, it was shoveled up into a wheelbarrow to distribute it to the roof.  This picture shows Peter, one of our volunteers, bravely about to take a turn shoveling.  A few of our stronger guys did this duty for about 5-10 minutes or so, but the local laborers were amazing in their ability to do this work almost all day.  I was very impressed with how hard these local laborers worked and for very minimal wages.  As for me, I stayed on the ground and shoveled sand into buckets to keep feeding the cement mixer.  I found that to be hard enough.

House before we started
The next day we spent building a concrete floor for a small house.  Here is the before picture of this shabby dwelling.  We had to remove all the items before starting, which included a chicken nesting her eggs in a corner with a rat behind her.

The family included 3-4 generations living in two small units.  Rosa, the matriarch was well into her 80s, while the youngest children were grade school age.
House when we finished
Pouring of the floor took all day, although it took a while to get started.  We didn't have a close source of water to mix the concrete, so they had to take a truck with a water barrel about 5 miles away where there was a river, and used buckets to fill the barrel from the river.

The Dominican laborers were very good at installing and smoothing the concrete floor, and it looked great when it was done.  The next day, we split the group up.  One group went to another house to pour a floor, and I stayed at this house to paint the inside.  It would have been great to have a paint sprayer, as the concrete walls were rough and full of holes and gaps, but we did the best we could with rollers and brushes.  Anyway, the place looked pretty nice when we were finished.

Rosa and me
The family was very grateful for the work that we did.  This was a family in what we would call extreme poverty, but they seemed to be happy and healthy.  I'm not sure how they survive in these conditions, but they do.  We bought the family new mattresses to replace the old ones you can see in the picture.  They were thrilled.

I have to say that it was an extremely satisfying and rewarding experience to be able to help this family live with a concrete floor instead of mud and to brighten their domicile with some lively paint.

On our last day, we also painted another house in the same region, where our other group had poured the concrete floor the day before.  This was a very large family living in a small 4-room house.  They had lived on a mud floor for the past 20 years until we arrived.  Again, this family was exceedingly grateful for our efforts.

I have to say that this was one of the best experiences I have had.  I learned so much about their building methods, their culture, their living conditions, and their people.  It was gratifying to be able to contribute some small amount to improving the lives of some of these families.  I hope I will be able to go on one of these Global Build adventures again before long.




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:  https://photos.shutterfly.com/story/id/100204191412

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

Blindsided

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.