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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. 

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!

Pre-walk
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!




Wednesday, April 27, 2016

Latest Results

Monday I paid my my monthly visit to the Farber.  The news is still good!  My blood work came out fine and I got the printout of my annual bone marrow biopsy pathology report.  In my last post, I mentioned that the bone marrow aspirate contained 7% plasma cells.  I lied.  Actually, it was 8%.  Last year it was 6%.  I asked Mary about this, and she said that Paul Richardson had reviewed the report and said it is no problem. Whew!  I still find that a little worrisome, however, since the standard criterion for complete remission is less than 5% plasma cells.  I might just have a little chat with Paul about this one of these days.

The best thing about the bone marrow pathology report was the conclusion:  "Diagnostic features of involvement by a plasma cell neoplasm are not seen".  I find it amusing to read doctor speak.  Notice the circumlocution and passive voice of this sentence.  It's as if the author doesn't want to take actual responsibility for this conclusion and chooses to cloak it in obfuscatory language (like what I did just now).

So what is a neoplasm anyway?  It sounds a bit ominous.  The term "neoplasm" is medical terminology for abnormal cell growth.  So why couldn't they just have said simply,  "We found no abnormal plasma cells"?  That would be straight to the point.  I guess that wouldn't sound erudite enough for the medical community, so they have to use pompous officious-sounding verbiage to impress one another.  I've gotten used to reading this kind of crappola over the last number of years of research and trying to translate it into understandable English.  Anyway, hurray!  I'm closing in on 5 years since my initial diagnosis and it's all good!

Only 4 days to go until the MMRF Boston 5K Walk/Run event in South Boston!  I'm overwhelmed that we have over 30 registered participants who plan to either run or walk with us in support of Team Epic for Bill on Sunday.  I'm also pleased that our fundraising is going very well, with over $9,000 of contributions to date.  We're still a little short of our $10,000 goal, but I am delighted with the outpouring of support we have gotten for this worthy cause.  I am very thankful for the many family members and friends who have made donations.  Because of our successful fundraising efforts, the MMRF has designated Team Epic for Bill as a "Top Team", so they will provide us with our own tent where our team can congregate.  Great!

It's still not too late to make a donation!  Here is the website:

http://support.themmrf.org/site/TR/RaceforResearch/General?team_id=41495&pg=team&fr_id=2362

The weather is supposed to be good on Sunday with no rain and temperatures in the 50s.  This should be a lot of fun!  After the race, we will host a brunch gathering at the Coppersmith restaurant in South Boston.  It's a way to say Thank You for those who are taking the time and effort to participate in this event.



Sunday, April 10, 2016

Florida Trip

Last weekend, we traveled to Fernandina Beach on Amelia Island, Florida to attend Pat Killingsworth's Myeloma Survival School.  It was a beautiful setting and what a wonderful time it was!  About 140 people attended from various parts of the country for this weekend event.  It was an awesome tribute to Pat's life.  Pat's wife, Pattie, was amazing!  She was so outgoing, upbeat and cheerful, and she made everyone there feel comfortable.  I can see why she was such an wonderful caregiver for Pat.  Her optimism and enthusiasm must have helped him greatly during his hardest times, and I'm sure she gave him extra energy to deal with his nearly constant pain and suffering. Wow! 

We met a number of very interesting people.  All were knowledgeable and well-informed.  It was an intellectually and socially stimulating experience.  I learned a lot by talking with patients and attending some of the seminars.  For example, some of the recent advances in gene expression profiling were very interesting, which could lead to individualized targeted therapies in the near future.  The Saturday night dinner was a tribute to Pat's amazing life, and it was a very fitting closure for those of us who miss him so much.  I hope and expect that they will continue to hold this event in years to come.  If so, we'd like to attend.

On Sunday, we drove down to Cape Coral, near Fort Myers, to visit with my college roommate, Steve, and his wife, Sue.  They have a really nice winter home on a canal which connects to the Gulf of Mexico.  It's a beautiful place.  We had a wonderful visit.  The weather was great!  Since it was cold and snowing in Boston then, it was a really good time for us to be in Florida.

Scott and Gretchen
We took an excursion on one of their friend's boat to cruise out into the Gulf.  On the way, we stopped for lunch at the Boat House Tiki Bar and Grill. They had a really good singer entertaining that day.  Gretchen started a conversation with him (surprise) and he happened to have family in Massachusetts.  When he told us that he grew up in Burlington, Mass., Gretchen told him that she did also.  It turned out that he graduated a couple of years behind her.  As an amazing coincidence, when she asked him if he knew her younger brother, John, he gasped and said, "Are you Gretchen?"  His name is Scotty and his brother is one of our best friends, Jeff Williamson.  Scotty spent a lot of time in John and Gretchen's home when he was young.  He told us that John taught him to play the guitar.  There were lots of hugs after that.  It's really a small world sometimes!  That was too much.  It's hard for me to get my head around that.

My bone marrow biopsy results are back, but when I try to access them through the Patient Gateway, there are no specific results posted.  I guess I'll have to wait until my next Farber visit to get the full results.  If I was really anxious, I would call, but I think I can wait.  One number that they did publish was the percentage of plasma in my bone marrow.  Last year it was 6%, but this time it is 7%.  That may not be a big deal, but that's not going in the right direction.  I'm slightly anxious to get the full report.


Wednesday, March 30, 2016

Bone Marrow Biopsy

Monday at the Farber was the time for my annual bone marrow biopsy.  Last year, I found the procedure to be extremely uncomfortable and painful, so they suggested that this time I could take an anesthetic to supplement the lidocaine, so I agreed.  I had Gretchen come with me so that she could drive us home.  However, this note wasn't in their system ahead of time, so I didn't get any prior instructions. Unknowingly, Gretchen and I went to the cafeteria for lunch before the procedure.  That was a mistake, because the IV they were planning to use required an empty stomach.  Oops!

One of the nurses came out to explain the remaining options.  I told her that none of this would be necessary if Zack was still there.  He moved out to California about two years ago, and everyone misses him.  I never had any issues with Zack doing my biopsy.  He was great!  The nurse said, "Let me tell you something.  The nurses here were the ones who trained Zack."  I replied, "Then he was a very good student."  She had to agree.  She gave me a couple of alternative options, including some anesthetic knockout pills, but in the end, I settled for just an Ativan to relax me.  That actually worked quite well.  I was able to relax more and this time was much better than last year.  I didn't feel any after effects at all, so I even drove home.  I think I'll opt for an Ativan (or 2) again next year.

Other than that, my numbers still look good.  I'll find out in the next couple of weeks whether the bone marrow biopsy confirms a deep remission.  My fingers are crossed.

We were planning to leave for Florida tomorrow to attend Pat Killingsworth's Myeloma Survival School in Amelia Island, north of Jacksonville.  It's so sad that Pat is no longer with us and I will never get a chance to meet him.  I'm looking forward though to giving my respects to his wife, Pattie, and meeting other MM survivors while there.  However, Gretchen isn't feeling well, so we changed our reservations to Friday instead.  I hope she feels better by then.

After that, we are planning to drive down to Cape Coral, Florida to visit Steve and Sue for a few days.  We are really looking forward to that.  The weather there is supposed to be in the 80's.  Yahoo! They told us to be sure to bring our bathing suits.  That sounds good to me!

Our fundraiser for the MMRF 5K Run/Walk is still doing pretty well.  We are over $6,000 in contributions so far, but we have a long way to go to meet our fundraising goal of $10,000.  If you haven't contributed yet, please consider making a donation to Team Epic for Bill.  Here is the website:

MMRF Boston 5K Walk/Run Team Epic for Bill

Thank you in advance!