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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?