9/13/14 – Better Days Ahead

This week as they say … was a DOOZY! I haven’t felt this tired or weak the entire time of my diagnosis. I started my week with meetings in Cherry Hill, NJ in which I felt very compromised and not being very effective at all. My voice was weak and my energy was low. Went into the city for radiation day 5, came home and crashed. Tuesday became more of the same. It was then I discovered via the online chart that my RBCs (red blood cells) and my Hemoglobin were extremely low. Lower than they have ever been in my case. WAAAAAY out of line with my trend. Unfortunately for me they weren’t low enough for the hospital standard to give me a shot of Procrit (which stimulates RBC production) or a transfusion of Reds.

This put me in a precarious position. I was obviously weak. I could barely function. I felt nauseous. I was tired. And by that I don’t mean tired. I mean TIRED! I couldn’t even speak without effort. I lost 12 pounds – actually probably needed that.

So I begged. I begged. And I begged some more. I got my Procrit and my counts are up a bit. Hopefully they continue to rise and each day I feel better. This is the first day that I have been able to write anything anywhere. No Myeloma blogging. No football blogging. Nothing. The concentration this week was my health. And on that front things are pointing up.

I continue to feel better Myeloma-wise. I don’t have a great read on it with all of these other happenings in the mix. BUT – no pain in the hip and no pain in the back are pretty good indicators. Some negative prognosticators are that my Albumin levels have dropped below 4.0 which I think better nutrition can improve. Remember, I haven’t had much appetite so if I start eating more and eating better and healthier proteins that number should stabilize above 4.0 again.

All in all, just glad to have a little bit more energy back. I now have a set rule with Mt. Sinai that when my RBCs or Hemoglobin drop to a certain level I will get a boost of Procrit. My levels are higher than the hospital “standard” and they are personalized for me. Just the same way Myeloma is personal for me.

I want to thank EVERYONE who has taken the time to check in this week with calls, texts, visits, emails and gifts. I know it is difficult to stop your lives and think about me but the support I meaningful and appreciated. There is a certain amount of fatigue with this Cancer. I go from the novelty of my diagnosis of the guy who has Cancer to the ongoing, seemingly never ending definition of the guy who has Cancer. It’s tiring. For all of us I know. We all have shit to deal with so every time someone takes even a second out of their life to send a wish or a prayer my way is meaningful.

Special thanks to my sister in law Carolyn and my friend Jeremy for enduring my crabbiness and New York City traffic to drive me to treatment and back. I realize that this is not something I should be doing on my own. I have many offers for next week so I will be reaching out to you all and setting that schedule up this weekend.

Another shout out to my cousins the Kessels who are celebrating the Bat Mitzvah of their daughter Sydney in Chicago this weekend. We were supposed to be there until radiation derailed us. Cancer can wipe that trip out but it can never wipe out the love we have for you. I miss you all very much and I was so looking forward to seeing everyone and celebrating. I will be thinking about you all weekend.

Lastly, now that I have some excess energy in me, I want to pay it forward to two families we are close with here in Westfield. Without mentioning names, and you know who you are, you have had to endure your own shit this past week. You have reached deep and used strength you might not even known you had inside you – but it is there. We all have it. And when needed, it comes out. I send every ounce of excess strength above my RBC and Hemoglobin count to you guys as you navigate your way through what you are facing. My love and thoughts are with you.

As I said in my answer to every text and email this week. BETTER DAYS AHEAD!

9/4/14 – The Draft

Having a bit of a rough reentry coming back from vacation.  I got enough time to relax.  I spent great quality time with the family.  I spent time doing things that I love doing.  Everything is great.

Tuesday morning I went in for my first dose of radiation.  Everything was smooth.  It only takes about 10 minutes.  I don’t even need to get undressed – just take my shirt off.  I left radiation to walk over to the treatment center for Chemo.  After drawing blood I settled in my room and the nurse began the IV, when all of the sudden another nurse came running into the room saying “No, no, don’t start yet.  Dr. J wants to see him before we start.”

Now that can’t be good can it?

They left the IV in my arm and took me down to the third floor to see Dr. J.  When he came into the exam room he pulled up my chart and told me he was going to change my regimen.  

“Why?” I asked.

“Because your numbers have jumped so significantly.”

“But they haven’t jumped significantly.”  I said.  “In fact, they are right in line with where they were before we started this cycle.”

“No.”  He said “No, look here.  You have doubled from where you were before.”

It was then I realized that he did not have the Myeloma numbers that were taken when I went to visit Dr. K at Sloan Kettering to consult about the transplant.  I told him this.  If you take the numbers that Sloan drew, my Myeloma numbers are slightly lower but it is really negligible with different labs.  It is within the margin of error.

After about 15 minutes of trying to explain to him that he didn’t have all the information, he finally called Dr. K to have him look up the Myeloma blood work that was taken at Sloan.  He said that he would release me for today but that he would be in touch to make a decision regarding my new regimen.

My timeline on this stuff:

7/22 – Blood work taken at Mt. Sinai after cycle of Velcade and Pomalyst (which did not work)

7/30 – Blood work taken at Sloan Kettering (was much higher than the 7/22 blood work from Mt. Sinai)

8/4 – Began cycle of high dose Carfilzomib and Pomalyst

8/22 – Blood work taken at Mt. Sinai (showed little to no change from blood work at Sloan)

I told him that my hip pain, although still there, has decreased and that my excruciating back pain was gone and I hadn’t even started radiation yet – so something must be working.

He was ready to admit me to Mt. Sinai and begin giving me continuous Chemo.  I don’t even know what that means nor do I know for how long!  I told him that I will do whatever he recommends but he needs to be playing with a full deck – with all the numbers available to him.  Patients and Caregivers really need to be their own advocate for this stuff.  I can’t expect that everyone at Dr. J’s office is going to follow through 100% of the time.  When I tell them I had blood work drawn at Sloan Kettering I can’t expect that they are going to call Sloan and get the results.  And this time … they didn’t.  Someone told me last night that approximately 200,000 patients per year can end up with the wrong treatment because of “medical mistakes” and lack of proper information.

Anyway – to make a very long story short – I got an email from Dr. J’s NP which said we are staying on the same regimen of high dose Carfilzomib and Pomalyst.  I was my own advocate.  Gee whiz!  I hope I was right!

So – the week has been tough.  Luckily, I was supposed to be in Baltimore for a conference this week and when I found out that I was to have radiation every day I had to cancel that so my schedule was fairly clear and I was able to adapt to these changes easily.

Throughout my battle with Cancer, I have managed to tolerate treatments pretty well.  I have kept positive, knowing all along that I would beat this.  I also always knew (and know) that there will be some dark days.  Lately, there have been too many of those.  But the things that have sustained me and will continue to sustain me are my family and friends, my coworkers and clients and … Fantasy Football.

Last night was our fantasy football draft for the guys in Westfield where I live.  I wasn’t feeling all that great.  I knew it would be a late night.  I knew I would have some hip pain as the night got later (and I did) but I also knew I needed my boys.  I mentioned these guys in a few posts.  These are my friends.  These are the guys that text, email, call constantly to check in on how I am doing.  And it is tough.  Because Multiple Myeloma is an ongoing battle, an incurable Cancer, I am sure that people are sick of me already.  When I was first diagnosed, everyone would say – “you got this” or “you are going to beat this” and other words of encouragement.  Now here we are 21 months later … and I am still battling.  Battling harder more recently but still battling.  The novelty is gone.  21 months later and I still have Cancer.  

And here’s the thing… I don’t LOOK like I have Cancer.  I am not quite where I was in late June at the golf outing.  In late June I was the picture of health – on the OUTSIDE.  Now, just two months later, I move a little slower.  I am much more deliberate in my movement.  I hadn’t seen many of these guys since late June.  Everyone goes their separate ways during the summer.  Beach, travel, camp visits, etc.  

I sat apart from everyone last night.  I wanted to sit at the end of the table because I knew with the night going so late I would need to get up and stretch and walk around a bit.  When I got there the ends were taken so I set up shop at the bar where I could have room to do my thing.  But it was great seeing them.  As I said, those guys are my sustenance.  They are part of what keeps me going.  We talked, we hugged, we drafted but most of all – for the first time in a long time we were all together.  In one room.  At a fantasy football draft.  And Cancer wasn’t in the room.  It wasn’t a part of the conversation.

This is the picture/poster they gave me when I went in for my transplant.  It is a picture of our champion, Joe, and the rest of the guys in the league.  I don’t know if those guys will EVER know how much they mean to me.  It is immeasurable.

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8/28/14 – The Bradstrong Chargers

Click here to read a story about a remarkable young man, my nephew Eli.

http://www.themmrf.org/donate-now-take-action/join-an-event/spirit-of-hope/chicago/coustan.html

When I was first diagnosed he used to ask his parents “Does Uncle Brad still have Cancer?” I believe with all of his successful fundraising efforts someday he will never have to ask that question again!

Thank you Eli for your spirit and passion. My heart is full.

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.

8/20/14 – A New Take On an Old Strategy

As I have gone through the last few weeks of treatment I keep running through my mind all of the different ways I have in my arsenal to beat this darn disease.

I have conventional medicine – chemotherapy, radiation, monitoring, clinical trials, transplants and everything that I am afforded by my doctors, my hospitals and my insurance plan.  Heck – if I could I would even go outside the insurance plan.  Everything – EVERYTHING – modern medicine offers is on the table.

I have alternative medicine – acupuncture, massage, yoga, nutrition, supplements, herbs, coffee enemas (wait – no – I don’t think I am ready for the coffee enema yet) and stress relief through mediation and breathing exercises.

I have love and support – family, friends, colleagues, text messages, comments on the blog, emails, phone calls – all of the ways that my community shows me they care and continue to care about me and my well being.  One friend emails me almost every other day (or at least as often as I put a blog up) and says “I hope I am not bugging you with too many emails.”  NOPE!  You can never bug me – they are the very thing that keeps me fighting and going.

Lastly, I have regularity – family, work, friends, fantasy football, paying bills.  This is the stuff that helps me live my life.  If I don’t get up and go to work, if I don’t continue to write, if I don’t spend that beach time next week with my family or take care of my household responsibilities then Cancer wins.  My life goes on day by day – sometimes as mundane as it is – but it goes on as if it did before Cancer happened.  REGULARITY gives me some sense of control.

BUT – I have to admit.  This round is tough.  Since I started on the high dose Carfilzomib I have been a little more shaky.  I have been a little more tired, edgy and weak.  I haven’t been able to work out because of the back pain (although minor now) that the tissue/mass has caused.  Maybe it is because of the dosage increase or maybe it is because it is my first time back on infusion chemo in about eight months.  OR – maybe my body is just deteriorating.  I notice it.  I move a little slower now.  I move a little more carefully.  I can’t go at things with reckless abandon like I once did.  Now my right hip is beginning to hurt.  Doesn’t hurt so much now but before the Carfilzomib cycle began I couldn’t walk up the stairs without help.  Do I have another spot in the right hip similar to what I had in the left hip upon diagnosis?  I don’t know.  I am going to play it safe though.  Even though I am not in any pain there I am having a PET-CT done on the spot on Friday just to be sure.  Doctors think it just might be that the back mass may be hitting a nerve.  Don’t know.  Gotta play it conservatively and safe.  Need to find out facts not suppositions.

It has been TOUGH.  I had scheduled my entire work week down in South Jersey and Philadelphia this week based on the fact that we had the shore house and I would just work from there for the first week before taking off the second for vacation.  Once I scheduled all of these doctors appointments I cancelled my week down there but I had one appointment I could not cancel.  So – yesterday I woke up (4:30 AM) drove 1 1/2 hours to Cherry Hill for a 7:30 breakfast.  Drove back to the city (NYC) for my back biopsy at 11:30 AM.  Took advantage of some down time and had lunch with a client in NYC.  Went to treatment at 2:00 and then had an MRI with contrast of the back at 5:30.  LONG, LONG, DAY!  I was poked and prodded more times than a tailor’s pin cushion.

As I was sitting (laying) on the table for the biopsy I was taking to the doctor during the procedure (they didn’t put me under which he probably regretted) about how I am going to beat this Myeloma.  I will share that thought with all of you.

First of all – I was once told that there are two kinds of Cancer.  The bad kind and the really bad kind so you should hope that if you get Cancer you get the bad kind.

Secondly – I am glad (in some sick perverted way) that this is happening to me NOW.  I am glad that Myeloma chose to be so relentless (left hip, aggressive, back, right hip) early on in it’s pursuit of me because I am stronger now than I would be when I am older so I am able to withstand the pain, the discomfort and the inconvenience with more tolerance now than later.  As I said last post – RIGHT NOW – I am stronger than Cancer.  I am stronger then Myleoma.

So I told Dr. M during the biopsy that my strategy is to wait it out.  I will outlast Myeloma.  Like Ali doing a rope-a-dope, taking his punishment and then charging back out late to knock his opponent out.  https://www.youtube.com/watch?v=b2FtrYwzdp8&list=PLEZmOP1KGUqr8YWMga6wvcr1KoOvrbVob&index=2  “Down goes MYELOMA!  Down goes MYELOMA!”  OK – wrong fight but you get the idea.

I was also telling Dr. M about an old story I once heard about Jerry Seinfeld.  Someone once asked him how he made it in comedy when so many others failed.  He said that every day he had lunch in the park with a group of guys.  After a while, guys started dropping out of the lunch group because they got “regular jobs.”  Pretty soon, he realized he was the only one left in the lunch group.  He just outlasted everyone.  He kept forging ahead.  When people said “no” he kept going and pretty soon they had no other choice because everyone else quit.  He was the only one left.  He outlasted them.

So… my strategy?  Stay on the ropes.  Take my beating now while I am strong and let Myeloma tire itself out.  This shit is relentless right now so I will let it keep coming.  I will take everything it throws at me.  Weakness, pain, soreness, tumors, tissue,  bone lesions, constipation, diarrhea, fatigue, whatever.  And when it is all done punching I will hit back.  BAM – clinical trial here.  BAM – clinical trial there.  BAM – T Cell Depleted transplant.  BAM – Newly approved drug.  BAM – Something that hasn’t even been INVENTED yet but will be available to me later because I took my punishment NOW.  

BRING IT.  BRING IT.  BRING IT ALL.  I got this.

I got this.

8/16/14 – Change of Plans

Now that I have had a good night sleep for the first time all week – thanks Percocet – I can reflect back on the past week and what lies ahead for our family in the constant battle that we face called Myeloma.

I spent four of five days last week at Mount Sinai including yesterday to meet with Dr. K, who will be radiating the tissue found in the MRI.  It was a wild week full of emotions.  In fact, I slept so well last night that it is almost noon and my head is still a little cloudy.

I brought my MRI disc to Dr. J on Monday to load into the Mt. Sinai system.  On Tuesday, as mentioned a couple of posts back, we looked at it together and saw an intact spine and vertebrae with no fractures or compression.  We did see, however, a mass growing outside the bones.  He wanted the neuro radiologist to look at if further before making a comment.

Wednesday I received an email from one of the NPs saying that the neuro radiologist saw a mass and Dr. J says it needs to be radiated.  That’s it.  A mass that needs to be radiated.  What do I do with that information?  You got it … Google!  Google is the most dangerous thing a Cancer patient can do to themselves.  I was convinced, based on my interpretation of the NP’s email, that I was terminal.  In fact, I was convinced that I had 3 months left.  3 MONTHS TO LIVE!

What would go through your mind?  3 MONTHS TO LIVE?  How do you prioritize?  What do you do first?  Let’s just say that beyond double and triple checking that the life insurance premiums are paid up I don’t know the answer to that one.  I wasn’t very good at the organization of my last 3 months on Earth.  I had too much on the list to accomplish.

What made that even worse was that I spent an hour and fifteen minutes of one of my final 90 days alive on a toilet in the men’s room at the Huntington Hilton on Long Island.  I was convinced that I was going to die right then and there.  Given my aversion to public rest rooms that would not have been my preferred spot for my final breath.  

That is why I sent the email back to the NP and said – “I need to see Dr. J face to face!  From what I am reading, this is a terminal situation!”  She responded back that it wasn’t terminal but that I could come in at 3:00 PM, which is what I did.  It was at that face to face appointment that he described exactly what they found – which wasn’t a “mass” per se but some soft Myeloma tissue outside the bone.  It wasn’t in danger of disrupting my organs as it wasn’t large and wasn’t pressing up against anything.  RELIEF!  

And for those of you who are battling Cancer or those of you (I hope not) who may in the future that is the greatest lesson learned from this experience.  COMMUNICATION is vital between you and your doctors.  I read comments on Facebook forums and Twitter feeds from people who are looking for answers.  My comment back is always the same:  “ASK YOUR DOCTOR!”  And if your doctor doesn’t respond?  Get a new doctor!  t am fortunate.  Dr. J and his staff are always readily available by phone, cell phone, email and they are, for the most part, extremely responsive.  BUT – my lesson learned is that I have to be careful and verify every piece of information and communication and if I am not clear on something it is MY RESPONSIBILITY to make a face to face appointment with my doctor to discuss and gain clarity.

I am NOT going to die in 3 months.  I am pretty sure of that now.  I am, however, going to have to fight a bit harder now.  Cancer just took our vacation away because I have to get 10 straight days of radiation starting next Monday.  We had a shore house for two weeks.  That is no more.  Next week I will be at Mount Sinai again for three days.  I have two days of Chemo, one more MRI with contrast, a biopsy of the tissue and we will do the mapping for the radiation treatments.

In the mean time, we are going to persevere and salvage our family time regardless.  Cancer can bend this family – but it can’t break this family.  Helene and Victor are going to drive to Williamsport Monday and check out some Little League World Series action.  We had to drive back from the shore a few times the first week anyway so Ava could be back for cheerleading so less stress on that front.  Tomorrow we get to see our cousins.  Victor and I are taking a tour of the SNY studios on Thursday night.  And then at the end of NEXT week – Friday – we are going to the shore for one week instead of two.  Thanks to the generosity of our friends the LaContis and the Bergmans, we have a place to stay at the beach that is closer than the one we originally had rented so I can zip into the city Monday thru Friday – get zapped – and then come back to the beach by mid day.  I should also mention that graciousness of my good friend Michael who let us off the hook on the original house in Margate in order to afford us the opportunity to salvage a family vacation.  As I mentioned time and again, our community and our friendships consistently help us pull through situations created by the uncertainty that life now brings us.

So … bad news is the original vacation is out.  Good news is … I am not going to die in 3 months AND we will have a great last week of August at the beach as if we planned it that way all along.  So keep coming at me Myeloma.  I will adjust.  WE will adjust.  My community is stronger than your gang of idiots you’ve got trying to bring me down.

8/14/14 – Everyone Is Fighting a Battle …

When Robin Williams passed this week there were all kinds of posts and memes (what IS a meme anyway?) about “Everyone you meet is fighting a battle you know nothing about.”

This week our fantasy football league in town had a bit of strife. An email chain started and got out of control a bit regarding rules. It degenerated into anger, name calling and general stupidity. We lost sight of why we play the game. We lost sight of our friendships. It’s just not that important. We’ve got other stuff to deal with. All of us. Everyone is fighting a battle …

Today I am back at Mt. Sinai for a visit with Dr. J. My MRI came back with some disturbing stuff. There is another mass outside the bone that needs to be radiated. I’m not sure what it is but hopefully will get some answers today.

The good news is that although there is active Myeloma in the bone marrow I am structurally sound. No fractures. My spine is in tact and I don’t have any compression.

Hopefully we can blow whatever this thing is in my body up and get rid of this Cancer for good.

I have to admit, I am a bit scared. For the first time I am ceding control of my situation to the disease. I can’t choose when to get treatments based on MY schedule anymore. I need to hit this thing HARD and FAST.

I haven’t had a ton of pain. Last weekend was tough. Monday, Tuesday and Wednesday I felt great. Last night, however, I started to get shaky. Chills, sweats, pain. Strange. I could barely get out of bed this morning. When the alarm went off at 5 AM I didn’t want to move but I had appointments for work on Long Island.

Honestly, I didn’t think I was going to make it from my bed to the shower. Helene asked me why was I even going? I don’t know, really. It’s what I do I guess. What else was I going to do cancel my appointments and sit around the house until I could see Dr. J?

Silly.

My first appointment was with a prospect who I was meeting at a Starbucks in Smithtown. He didn’t show. I called him at his office. He said he would be there in 20 minutes – no – 1/2 hour. OK – my next meeting wasn’t until noon. I could wait. No big deal.

45 minutes later – a phone call – we need to reschedule. What? I barely made it out of the house let alone Smithtown, NY!!! Everyone is fighting a battle …. He didn’t know that but if he did would he have acted differently?

Let’s just say the day didn’t get much better after that. I will spare you the gory details but I had a good long seat in the Huntington Hilton men’s room for about 45 minutes as well.

FAST FORWARD … just got out of docs office:

Thankfully the news from Mt. Sinai isn’t as bad as I feared. Just a little tissue outside the bone. Will have 10 more days of radiation. We will biopsy the tissue Tuesday when I come back for chemo. The chemo may already be working against it anyway.

Dr. J set up appointments for me with the radiation department and Dr. M the biopsy guy. Dr. B, who did the first round of radiation, has left Mt. Sinai. I had to go see his replacement for a follow up and she left me waiting for over an hour. So I left. Her assistant called me the next day and I kind of went off on her. It was the second time they left me waiting and the second time I left. I hope I am not “flagged” in her system. Everyone is fighting a battle …

As they were drawing the blood work in the lab for the biopsy doc, one of my favorite nurses, Patrick, came into the lab. “You’re back again?” He said.

“Yep.” I answered. “This shit is relentless.”

He came back with “You are more relentless. I am convinced of that.”

I am more relentless. I am more relentless than Cancer. I am more relentless than Myeloma.