8/27/14 – Lemonade

When I last left you guys we were working on the attrition strategy.  Waiting out Myeloma until it tires itself out and then pouncing on it when it is weak.

So far … that seems to be working.  The waiting it out part not the tiring it out part.

I received a whole slew of blood work, scans and biopsy news from Mt. Sinai yesterday and the results indicate that we are making some progress but slow progress.

First – all of the Myeloma measurements are just about where they were for the last cycle.  No significant change.  The IGg number is higher although still normal.  The Kappa Chain number is either slightly higher or slightly lower but virtually unchanged.  I can’t remember what the reading was when I did the blood work at Sloan Kettering for the transplant doctor, Dr. K, but the results are within the margin for lab error anyway.  Negligible.  My M Spike is slightly lower than it was at Sloan.  But again – negligible given that different labs have different readings.  

With all certainty I can say that this HD Carfilzomib, Pomalyst and Dexamethasone is working on the proteins that don’t matter. They are all being knocked out way below normal range.  This can be seen in the ratio of Kappa chain proteins to Lambda chain proteins which is as high as it has ever been.  i am not one to interpret but hopefully that is a good indicator that we have stabilized (somewhat) and the regimen will begin to work on the bad proteins now when we return to treatment next week.

Yes – the results are disappointing – but straight line progress is not a realistic expectation.  There will be ups and downs.  The past few months have held more downs for sure but I am working the rope-a-dope strategy until it turns around.  I am thankful to Helene and the kids for keeping me smiling and sexy through it all.

The biopsy on the back came in as expected.  It is Myeloma tissue growing outside the bone.  I will have that radiated beginning Tuesday.  It is actually a welcome relief because last week I spent EVERY DAY (except Thursday) at Mt. Sinai.  It is nice to have the time away from that place no matter how much I like it there.  

We also did a scan on my right hip – at my request – because I have tremendous pain there.  The pain there is very similar to when I was diagnosed.  I am having trouble getting around.  I can’t run or jump – so the gym has been out for now.  I can’t even get in and out of the car without tremendous pain right now.  I am back to the holding on to the side of the dresser/bed/chair for support when I put my pants on.  Getting up the stairs is really, really difficult.  Again – this time on the opposite hip.  This shit is quite relentless, this Myeloma.  The GOOD NEWS is that the scan showed nothing out of the ordinary.  No plasmacytomas or tumors in that area.  Just good ol’ Myeloma and bone lesions doing their thing.  I can handle that.

OK – enough bitching – how do you find a SILVER LINING out of all of this?  Welp.  It is tough.  I’d be lying if I said it was easy.  BUT – really as each day goes by I feel a little bit better.  The pain in the hip remains but the back pain is gone.  I wake up with a headache every morning but they are becoming less severe by the day.  Dehydration – I think.  Paying very careful attention to the kidneys and making sure I drink water, water, water all the time.  Kidney function is still great according to all the measurements but being particularly proactive in that area.  But seriously – I feel good.  I feel like Myeloma activity has peaked here and we are about to go on a downhill run against it where things are going to ease up as the Chemo takes hold.  

So, what do you do?  How do you find the SILVER LINING here?  You make LEMONADE.  You know the saying … “When life gives you LEMONS …”  

We did manage to get to the beach when all was said and done.  The two weeks in Margate we were hoping for, as you know, we had to cancel.  But we ended up in Rehoboth thanks to the break in the action at Mt. Sinai, an off week for Chemo and the generosity of an old friend.  After hearing that we weren’t going to start the radiation for another week I called my high school friend Kevin and told him I was renting a place in Bethany Beach for the week.  By the way – I LOVE BETHANY BEACH.  Sorry Jersey Shore enthusiasts – I love it there as well – BUT Bethany/Rehoboth is really my favorite place to go for a beach vacation. Anyway – back to our story.  I called my friend Kevin because I knew he had a home in Rehoboth and wanted to see if we could get together when we were down there.  Instead, he invited us to stay with him at his house.  NOW – for those of you who know me well – and even some who don’t – this is a BIG STEP for me.  I normally don’t like to stay at anyone’s house.  I have a routine.  I don’t like to mess that up.  I have issues – you know – poop and stuff.  I don’t like to stay at other people’s homes.  It isn’t something that comes naturally to me.  Kevin caught me in a moment of weakness though and wouldn’t take “no” for an answer.  When I called him I was coming home from Mt. Sinai on Friday afternoon.  It was after a LONG, LONG week of chemo, biopsies, bone scans and travel.  Had I been on my game I would have told him that “I already have a place rented” or something like that but I was off.  

BUT – WOW – it really could not have worked out any better for us.  First of all, his home is beautiful and right on the beach.  There is a tennis court in the community and a swimming pool.  The kids are having a great time.  AND – we are in my favorite place – not even five minutes from Rehoboth – Nicola’s, Funland and the best chocolate peanut butter ice cream in the world.  YES – in the world.  Kevin and his family were here Saturday, Sunday and Monday.  Now they are back home in DC (school started there already) and they are coming back Friday night.  We are leaving Saturday AM so we will get to spend a little more time with them.

So – there are SILVER LININGS everywhere – even in the midst of pain, chaos and Cancer.  Victor and I were talking about this over ice cream last night.  The conversation was about making something out of nothing.  You know – making LEMONADE.  We made lots of LEMONADE this week.

We have been in the ocean, played tennis, hung out on the boardwalk – played boardwalk games and rode boardwalk rides.  We went fishing on the beach.  We bought a skim board to ride waves in the ocean.  We went bike riding.  I wake up every morning and walk down the road to Dewey Beach to pick up coffee and bagels for everyone.  That walk is tremendous.  I can smell the ocean.  I can smell the sand.  Fresh air for a Cancer patient is the best medicine.  Ava shared the walk with me the other morning.  It is just GREAT.  It is GREAT down here.  It is a better prescription than anything Dr. J could give me.  The BEACH, my FAMILY and the chance to see a GREAT, GREAT FRIEND.

For all of us, the SILVER LINING is that we GOT that beach vacation.  No…it wasn’t two weeks as originally planned but the truth is that the first week of that vacation I would have been working anyway.  Ava and Helene would have had to drive up to Westfield twice for cheerleading and Victor and I once for baseball.  So we got the vacation.  We are doing everything we wanted to do but just condensed the time.  Sorry work – I have to say it – I haven’t thought much about you this week.  I promise I will be back to you next week but this week is for other things.

For me, the SILVER LINING is that I got to see my friend.  Growing up in Chicago, spending time in DC, living in New York it is hard to keep connections.  There is always a sense of displacement because you never really know what your “home base” is.  As Kevin put it so eloquently describing our relationship to someone in his community – “We went to high school together and left for college and Brad never came back.”  True.  My parents moved back to Chicago and that’s where I went back to.  But our connection remains strong.  The real SILVER LINING in all of this for me is getting a chance to reminisce with Kevin about growing up.  The real SILVER LINING is hanging out with Kevin’s wife, Lisa.  I probably haven’t seen her since their wedding.  The real SILVER LINING is getting to hang out with Kevin’s kids – getting to watch them interact with my kids.  Kevin and Lisa have raised the kind of kids that parents could only dream about.  They were so nice to our kids.  Their kids are intelligent, polite, hard working, outgoing … I could go on and on but clearly they have been raised by great parents.  That stuff makes me so happy.  Even though they are four and six years older than our kids, they found common ground.  My kids really looked up to them.

So … it is an old adage but a true one.  Making LEMONADE.  I am so thankful my family is as resilient as they are.  it is frustrating to be at the beach and be so compromised.  I have a tough time supporting myself in the ocean waves due to my hip.  Even casting the fishing rods I had to be conscious of the waves crashing against my body and knocking me down unexpectedly.  My kids definitely know that I am compromised but we won’t let it stop us from doing anything we want to do.  Sometimes I will just watch.  That is pretty tough for me.  I like to DO, not WATCH.  BUT – if I can get over my irrational stay at someone else’s house thing, then I can do the observer thing too.  The joy is in being together.  The joy is in taking a little slice out of the calendar and doing nothing but being us – our family – for that week.

6 responses to “8/27/14 – Lemonade

  1. Hi Brad! So glad to hear of your fun trip to the beach and loved seeing the pics on Facebook – keep the silver linings coming. We are thinking of you all and sending our love from Chicago. Xoxo

  2. I love the beach, too. Esp. Ocean City, MD, and Bethany and Rehobeth. Haven’t been in a while, it’s a long ride from Idaho! For me, the beach is therapy. The smell of the ocean, the fresh air, all of it. Happy that you are getting this vacation!

  3. being near and in water has become the greatest thing i can do. So healing and freeing. Hang in there. Love your silver linings and myeloma doesn’t stand a chance against you.

  4. So glad you got to spend time with Kevin and family in Rehoboth! You are always so amazing at making Lemonade. Have been thinking of you lots lately and know that you are going to defeat myeloma!

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