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!

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1

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.

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. 

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!

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!

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!

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.

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.

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!

Birthday

Today marks the fourth birthday of my stem cell transplant on March 20, 2012, when I received my brand new immune system.  I now have two birthdays, December 2 and March 20.  I share the honor of having two birthdays with Queen Elizabeth, whose actual birthday is in April but whose official birthday is in June.  How many people can say they have two birthdays?  I feel so regal.  I think Liz and I share something special.  Maybe I'll give her a call tonight just to share this.  Maybe not though...she's probably asleep and it's too late to call.  Oh well, dream on.

Seriously though, I am very pleased to have reached the four year mark after transplant and still be in remission.  I am so grateful. 

I'm healing slowly from my facial surgeries for skin cell cancer.  I'm not too happy yet with the wounds, especially on my nose, but I go in tomorrow for a followup visit.  I just don't want to be horribly scarred for life, not that I'm planning on auditioning for any movie roles.  I'm not ready to call the surgeon a butcher yet, but we'll see.  Meanwhile, I've found a new dermatologist in Newburyport that I have heard good things about.  I may try to set up an appointment with her in the next couple of months.

We are getting ready for our trip to Florida.  Visiting Amelia Island to mourn Pat Killingsworth will be an emotional trip.  I'm sure I will meet some other MM patients whom I have either met with in person or communicated with online.  I want to pay proper respects to this most amazing person, who has been a beacon of hope and light to me throughout my MM journey, as he has been to so many others.

After that, we will visit my college roommate Steve and his wife Sue for a few relaxing days in south Florida.  After all the stuff that's been going on here, I think we can use the break.

Please help us raise funds for the MMRF Boston 5K Run/Walk event on May 1.  So far, we have raised over $4,000, but we have a ways to go to meet the Team Epic for Bill fundraising goal of $10,000.  Please help us raise money for this worthy cause, which will help to give hope to all of us multiple myeloma patients.  Here is the website:
http://support.themmrf.org/site/TR/RaceforResearch/General?team_id=41495&pg=team&fr_id=2362
Thank you for your support. 

This and That

Last week at the Farber, everything came out normal again, thank goodness.  I'm very lucky to still be in remission at cycle 45 of my maintenance therapy.  Believe me, I don't take this for granted.

We are getting ready to head to Florida at the end of March to commemorate Pat Killingsworth's death at a memorial celebration for him at Amelia Island.  I'm still not over the shock of Pat's passing, as are most of his devoted followers.  I look forward to meeting in person some of those MM survivors with whom I have been in contact over the years, as well as new friends I don't yet know.  I hope this can be both a solemn memorial and a new dedication for us to move forward in his memory to find a cure for this insidious disease that took him from us.

Afterwards, we will then drive down to Cape Coral, FL for a few days to visit my college roommate and his wife, Steve and Sue. Even though this winter has been kind to us so far, we are really looking forward to getting away to the sunny south of Florida and spending time with our good friends.

Tuesday, I had some minor surgery on my face for a couple of skin cancers:  a squamous cell carcinoma on my jaw (Mohs surgery) and a basal cell carcinoma on my nose (scrape and burn).  I now look like I've been in a street fight as I sport my bandages (I'd like to think the other guy looks worse).  I'll spare you by not showing a selfie.  Anyway, this is the price I have to pay for the indiscretions of my Irish youth by basking in the sun without using enough sunscreen.  I'm sure there's more of these to come, but I plan to keep on top of this by frequent visits to my new (as yet to be named) dermatologist.

The big thing in our lives right now is my sister-in-law, Kathy.  I've been helping her with research and in finding her the best oncologist: Dr. Temel, Clinical Director of lung cancer at Massachusetts General Hospital in Boston.  Yesterday, she finished her 3 week regimen of whole brain radiation for her metastasized lung cancer.  She has been a real trouper, and has survived this phase amazingly well, with few side effects so far.  Her hair has now fallen out, but she is sporting a new wig, and she looks and sounds as great as ever.  She starts her chemotherapy on March 22.  If anybody can beat this down, Kathy, with her amazing health, energy, and incredibly positive attitude is a good bet to do this.  In the mean time, there are a lot of new therapies being tested that might give more favorable long-term prognoses to lung cancer patients like Kathy.  Let's just hope for her to live many more years along with those of us who love her.

I'm really looking forward to the MMRF 5K Run/Walk event on May 1.  We have 19 participants signed up to run or walk.  So far, we have raised about $4,000, but that is far short of our goal of $10,000.  I invite any of you who have not yet contributed to please make a contribution to this worthy cause.  I would really appreciate it.  Here is the website which you can copy and paste into your browser:

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

I thank you in advance.

Today I went to the gym to train for this event.  I am doing interval training, some walking and some jogging, to prepare myself in case I might want to run rather than walk.  I wasn't supposed to do any exertion after my surgery on Tuesday for a full week, but I felt I could run and walk today.  I did 25 minutes of combined walk and run.  My surgeries were fine.  Unfortunately, I forgot to put on my knee wrap today.  I got through the exercise fine, but afterwards, my right knee started hurting, and I have been hobbling ever since.  Shit!  Maybe I just screwed everything by pushing too hard today.  I don't know.  I have been using this 5K run/walk as an impetus to get myself in shape.  I hope I can still do this without screwing up my knee.  We'll see.

Cancer Sucks - Part 2

In my previous post with this title, I was worried about Pat Killingsworth, who tragically passed away last week.  I feel like I have lost a real friend, though we have never met.  However, I also had another reason to worry that is closer to home.  My sister-in-law, Kathy, has just been diagnosed with lung cancer!  By the way, she doesn't smoke and she is only 56 years old.  Our whole family is stunned.

Kathy had no symptoms, but she recently noticed an enlarged lymph node on her neck.  A biopsy then showed it to be adenocarcinoma.  A PET scan then showed several other cancerous lymph nodes near her lungs and a possible lesion in her lungs, so it was diagnosed as a Stage 4 lung cancer!  Furthermore, a follow-up MRI showed that it has metastasized to her brain.  Yikes!

Since I have been through this drill for myself, I have been helping her with online research and trying to help find her the best care possible.  Gretchen and I have been supporting her by attending her appointments.  Fortunately, with the help of other close friends, we have been able to direct her to one of the best lung cancer oncologists in the country,  Dr. Jennifer Temel, the Clinical Director of Thoracic Oncology at Massachusetts General Hospital (MGH) in Boston.  She is now Kathy's oncologist.  MGH, along with the Farber, is one of the best cancer treatment centers in the world.  I think finding Dr. Temel at MGH is similar to my finding Dr. Richardson at the Farber.  She couldn't have found anybody better.  Starting next week, she will begin whole-brain radiation therapy for about 3 weeks, to be followed by chemotherapy.  Kathy is a real trouper, and she has been handling this extremely well with strength and optimism, which will help her greatly as she and her family and friends face the long road ahead.  Cancer sucks!

Another friend of ours, a cancer survivor, has recently been experiencing very low white blood cell counts.  She just had a bone marrow biopsy to determine if she has myelodisplastic syndrome (MDS).  If so, it could have been caused by her previous radiation and chemotherapy treatments.  We are awaiting these biopsy results, which should be available in another week.  Cancer sucks!

My daughter-in-law, Pam, phoned me two nights ago about a friend of her close friend in Holland who was just diagnosed with lung cancer.  He wants to come to the U.S. for treatment, and she wanted my inputs.  I am waiting to hear from him with more details, but I might be able to help set up appointments for him either at MGH or Dana Farber.  Cancer sucks!

On a much less dramatic note, I had an appointment with my dermatologist yesterday, and quite a few anomalies showed up.  She used liquid nitrogen spray to treat fifteen (!) pre-cancerous actinic keratoses on my scalp, face, and torso.  She also took two biopsies of sites on my face which she suspects are either basal cell carcinoma or squamous cell carcinoma.  I will get the results in a week or so, but I'm pretty sure I'm headed for more surgery.  All of this has occurred since my last visit 6 months ago, after which I had surgery to remove a squamous cell carcinoma from my forehead.  That's a lot of shit to happen in only 6 months!  After the biopsies, she suggested I make an appointment to come back in a year.  (!!!)  What the f**k!  I told her she had to be kidding me.  She looked shocked and asked if I wanted to come back sooner.  "Damn right I do", I responded, so she then scheduled an appointment for me to come back in 4 months.  I won't keep that appointment, however, since I plan to have a new dermatologist by then!  This is another example of how you have to take charge of your own health care.  Cancer sucks!

Tomorrow, I am headed to Ocean Isle Beach, N.C. for a week of golfing with my son, Jeff, my friend, Bobby, and about a dozen other old farts like me, all of whom are from the Pittsburgh area.  (Maybe I should leave my Patriots cap at home.)  After all the stuff going on around here, I think I need a break, although thoughts of Kathy won't be far from my mind.  I'll just hit the shit out of that little round ball and not care much about where it goes.

Oh yeah, and I think I will take some sunscreen along.

By the way, cancer sucks!

A Sad Day

Sadly, Pat Killingsworth died today on his 60th birthday.  His frail body could no longer sustain the ravages of the various complications he has recently faced in his myeloma fight.  His passing is a tragic loss for his wife, Pattie, his family, and for the many hundreds of us myeloma survivors who relied on his daily blogs to sustain us, inform us, encourage us, inspire us, and entertain us as we dealt with this insidious disease.  His death leaves a tremendous void in all of our our lives.

Pat's blog has been a constant and comforting companion to me ever since my diagnosis with MM in 2011.  He has been an invaluable resource in my research over the years.  I relied on his experience with his stem cell transplant to help inform my own decision.  I read his book on the subject, and we spoke on the phone several times along the way, which was very helpful.  He invited me to document the decision process I used leading to my stem cell transplant, which he then published on his blog.

If you read the comments to his last post,
http://multiplemyelomablog.com/2016/02/im-not-dead-yet.html ,
you will understand how much Pat has meant to those of us in the myeloma community and how much he will be missed.

I have always wanted to meet Pat face-to-face.  For the last two years, he has hosted a "Pat's Beach Party" near his home in Amelia Beach, Florida, to gather myeloma patients from around the country to share stories and get to know each other.  I've wanted to go, but unfortunately we couldn't attend either year due to previous conflicts.  This year, however, we have made plans to attend the event on April 1-3, and I was excited about the opportunity to finally meet this incredible person.  I'm devastated that he is no longer with us.  I'm not sure what will happen with this year's event, but I suspect it will still be held as a memorial to his life and works.  If so, we'll be there to honor Pat's memory and to share our grief at his passing.

Pat would always end his posts with this message,  "Feel good and keep smiling!".  Right now, I don't feel so good, and I'm finding it kind of hard to smile.

Cancer Sucks

Despite the title of this blog entry, Gretchen and I had a good visit with Dr. Richardson on Monday.  Fortunately, my primary numbers are still good as I start my maintenance Cycle 44.  I did notice, as I have in previous visits, that my bilirubin number is high.  Normally, it should be <1.2, but mine was up to 1.8!  Some of my previous visits also showed high bilirubin numbers.

Since bilirubin is associated with the liver, I have been concerned that I might have some liver malfunction.  Considering the amount of alcohol I have imbibed over the years, I'm surprised it works at all!  Previously, when this number was high, Mary has told me that it is no problem because all my other liver functions are normal.  But when I brought this up to Paul on Monday, he casually said "Don't worry, you have Gilbert's Disease", as if I should have known this all along.  Oh really?  What's that?   All I need is another disease, right?  Anyway, he said it is no problem.

So I did a little research.  It turns out that it is a benign disorder of elevated bilirubin which has no serious consequences.  I found that those who have this Gilbert's Syndrome may suffer from mild jaundice.  So if I look a little yellow to you, now you know why (I'm not saying that I'm a chicken).  I also learned that this condition is associated with a much lower risk of Coronary Artery Disease.  Well that's comforting.  Maybe this is good news after all.  Not to worry, right?

As for the MMRF Boston 5K Run/Walk event, Pam's Team Epic for Bill has started out well.  I'm gratified that there have been some very generous donors.  I thank all of you who have contributed so far!  We have raised almost $2,500 to date, but we still have a long way to go to get to our fundraising goal of $10,000.  I think it would be awesome to raise that much money to fund MM research.  Those of us with MM depend on continued research to find the medicines that will either control or hopefully cure our disease.  I would appreciate it if you would contribute and reach out to others who might be interested in contributing to this cause and/or joining us in this event.  Thank you in advance!

I have started going back to the gym to train for this event.  Right now I am beginning interval training combining walking with running to see if I might be able to actually run rather than walk in this event.  I've been wearing a knee support to see if that helps.  I'm just starting, so I don't know where this might go, but I think it would be really great if I could actually run for 3K if my knees hold out.  If not, I will at least walk or crawl, but I'm determined to do it.

I'm really concerned about my favorite bloggist, Pat Killingsworth.  He has been a constant source of inspiration to me and many other MM patients over the past years.  He has suffered myriad setbacks along the way, but he manages to blog on a daily basis no matter how badly he feels.  We are planning to visit him in the beginning of April for his annual Pat's Beach Party in Amelia Beach, Florida.  I'm really looking forward to meeting him face-to-face for the first time. 

In the last few days, however, he has had some serious setbacks and has been in the emergency room for complications from his dual tandem stem cell transplants a few months ago.  All of us faithful followers are holding our breaths hoping that he makes it through this difficult stage.  Here is a link to his blog:  http://multiplemyelomablog.com/.  Here's to you, Pat!

Pat is one of the reasons that I titled this blog "Cancer Sucks".  There is more, but I will save that for a later blog.

MMRF Boston 5K Walk/Run

Brian, Pam & Logan - 2015 Pittsburgh Marathon

Something very wonderful happened this weekend!   My son, Brian, and daughter-in-law, Pam, have recently spent the first Sunday in May running in the Pittsburgh Half Marathon.  Pam, along with her sisters and cousin, are all avid runners.  Last year, I went to Pittsburgh to cheer them on and to hook up with my family in the area.  This year, however, the Pittsburgh Marathon is on May 1, the same day that the Multiple Myeloma Research Foundation (MMRF) is sponsoring its annual 5K Run/Walk Team for Cures event in Boston.  Here is a link to the website:  MMRF Boston Team for Cures.  Last year, I attended the 5K event (as a spectator) and supported our friend Anne Riskin's team, Jeff's Juggernauts, in honor of her late husband who succumbed to MM.  I decided that I would stay in Boston this year to support the MMRF Team for Cures event again.

Yesterday, I found out that Brian, Pam, and her sisters have all decided to forego the Pittsburgh Marathon this year and run in the MMRF 5K instead!  More remarkably, Pam and Brian have created a team to raise funds on my behalf!  I was overwhelmed.  The team is called Team Epic for Bill.  Here is a link to MMRF team website:  Team Epic for Bill. They plan to enlist additional family and friends, including Pam's cousin, Guy, who will come up from Houston!

Doin' my job at the 2015 MMRF 5K

I have already joined the team and signed up to walk the 5K.  Last year, all I did was hold up one end of the finish line.  I know that is an important job, but I'll let someone else do that this year.  I just started going back to the gym after a long hiatus, and I have been using the treadmill.  I now have a goal to get myself in shape for this event.  If my right knee holds out (torn meniscus, arthritis, etc.), I might even consider running (or slowly jogging).  Dammit, I'll crawl if I have to, but one way or the other I'm going to do that 5K!

Dr. Richardson is the honorary chairman for the MMRF Boston 5K, and he also runs in it.  I emailed him about Pam and Brian's new team, and he is delighted.  As a coinkydink, I have an appointment with him tomorrow at the Farber for my monthly checkup.  I suspect this topic just might come up.

Team Epic for Bill has set a very ambitious goal to raise $10,000 for Multiple Myeloma research this year.  We will have to work hard to achieve that goal, so you can expect to hear a lot from me about this over the next 3 months.  Don't be shy...sign up now!

Still in Remission

Monday I went to the Farber for my monthly checkup, and everything is still good!  I am now on Cycle 43 of my Revlimid maintenance therapy that began in August, 2012.  I have now signed all the paperwork that extends this transplant clinical trial for another 3 years until 2018.  If I am lucky and stay in remission, I will still be a part of this trial until then.  What's really good news is that my Revlimid will still be cost-free to me as long as I am on this trial.  I can't believe how fortunate I have been so far with all of this.  What would have happened if I hadn't found Paul Richardson back in 2011 when I first got diagnosed with Smoldering Myeloma?  Where would I be today?  I don't even want to think about that!

The holidays were wonderful.  We spent Christmas at Brian and Pam's in New Jersey and got to watch Logan open his presents from Santa.  That was special.  The magic of these days will soon pass, but it's great to see it while we still can.  My bro, Terry and his wife Sherry came up for the week over New Years, so it was a really nice family holiday season.

I have signed up for us to go to Pat Killingsworth's beach party for MM patients at Amelia Island, Florida on April 1-3.  This will be the first time we have been able to go, and I am really looking forward to meeting Pat in person for the first time.  He has been through an awful lot lately, having tandem cell stem transplants, with all the associated complications, but he seems to be doing quite well now.  I hope to meet a lot of fellow MM survivors at the beach party.  Here is a link to his daily blog:  http://multiplemyelomablog.com/.  He continues to be a font of information to those of us in the MM community.  He's amazing!

After that, we plan to visit my college roommate friend, Steve, and his wife Sue in Coral Beach, Florida for a few days.  I hope this winter is a lot friendlier than the Snowmageddon of last year.  Maybe by the end of March we'll be glad to get out of Dodge.

May the Force be with you!