9/27/14 – Backpack, Backpack

Welp – we finally got it done yesterday. After a week of low blood counts, bad calcium counts and fevers I finally got the Chemo backpack.

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In this bag full of Chemo is a cocktail that is supposed to get my numbers under control so we can proceed to the next phase of treatment. My brother in law, Jeff, and I went to Penn on Thursday to consult with doctors there about a very exciting therapy. BUT – first things first.

It actually doesn’t feel that bad. There is a bag of Chemo cocktail inside the backpack attached to a pump which is hooked into the port on my chest. I wear it for 96 consecutive hours. It’s lightweight so I can function with it on AND it’s sporty. I feel like a city girl with my little black backpack.

After the 96 hours we will take my myeloma markers again and hopefully see progress toward remission so we can take the next step at Penn, Sloan Kettering or Mayo Clinic – whichever is right. I have options. That is the important thing.

It feels good to finally have a long term plan. It feels good to be driving toward something real and driving toward something that can give me a nice, long lasting remission. The past few weeks have certainly kicked my butt. Not with pain or sickness but with uncertainty. Every day I woke up to something different.

My strength during the last two years has been my ability to organize the many facets of my life – family, friends, work. I haven’t been able to do that over the past few weeks. Now that I have some certainty back and a long term plan I can incorporate that into my day to day life and that makes EVERYTHING much easier.

Special thanks to my friends Joe and Mike for making the trip to Mt. Sinai with me yesterday. It is so great spending that time with good friends. Again, the trip was longer than we planned but nobody batted an eye. Afterwards we went and had dinner with a bunch of friends. Rosh Hashanah leftovers. Me and my backpack. My new companion for the next 96 hours.

Just like Dora the Explorer. I hope that map inside is a map toward the CURE! Or at least toward REMISSION.

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#betterdaysahead

9/23/14 – The Best Laid Plans of Mice and Men

Very quick update on today’s action. Will write more tomorrow. Went into Mt. Sinai to get hooked into the 96 hour chemo back pack. But – came back with something much different. Long story short, my hemoglobin was very low so I got two bags of blood and my calcium levels were off so I got a Zometa transfusion.

We will try for the chemo hook up Friday.

I am feeling OK if a little tired. This battle is becoming tougher with each unknown day but there is a lot of fight in this old dog.

Hero of the day was Doug Bushell who thought he was driving me in for a simple 3 hour procedure which turned out to be a 12 hour ordeal. Thanks man. He didn’t even flinch.

Thanks everyone. I am feeling great. Will answer individual texts and emails tomorrow. Love you all!

BC. #betterdaysahead.

9/17/14 – Brian’s Song

Another tough week on the Cancer front. I don’t have all the information yet but apparently the last 10 days of radiation plus the high dose Carfilzomib did not work enough to continue. Preliminary numbers show that we haven’t moved the dial.

Sunday night I woke up in the middle of the night in so much pain I just had to look at Helene and tell her that this is not how I am supposed to feel. Something is way off. We called Dr. J and drove into the city for (ANOTHER) consult. As it turns out I had a fever and my pulse was racing. I was trying to fight this thing back – whatever it was – in the midst of radiation and chemo.

So – again – more down time. I haven’t even been able to get in and out of the car without pain. They gave me some new pain meds and an antibiotic to cover me in case of infection. Truth be told, I am feeling much, much stronger today than I did yesterday and much, MUCH stronger than I did on Monday.

The issue now is what is our next course of treatment? I am not sure we know that yet but Dr. J says we have many things at our disposal to throw at this. That’s what I needed to hear. Many options. Tomorrow I am going in to have a port installed in my chest because my veins are getting a little crusty. I am also getting a blood transfusion as well so my energy should keep increasing.

I had a lot of time to be introspective this week. I wrote in a previous post about Cancer “fatigue” and how this is now a part of my life. I am very fortunate in that I tolerated my early regimen very well. 12 cycles of Carfilzomib and Revlimid and the Autologous SCT. It was a breeze. I was in the gym every day. Doing my kickboxing. I was always able to rally – even on the WORST of days – for a business meeting. I was kicking Cancer’s ass. Mind over matter. I was going to do it all. Work, family, writing football articles, coaching. There wasn’t anything Cancer was going to stop me from doing.

But somewhere over the last month – mind over matter changed. Cancer fatigue set in on me. And YES – I know – rest is important. The body has to heal. But here’s the thing – this shit is toxic and it is CUMULATIVE. I now have almost two years of toxins in my body plus two doses of radiation. And YES – I know – it is SUPPOSED to kick my ass. But I have to find a way to overcome that. Even if it is just a little bit each and every day. I walked Stella around the loop today in the neighborhood. I can (and I always do) stay hydrated. Acupuncture. All of these things contributed to my success early on but I gave them up because of Cancer fatigue.

By the way – just to add insult to injury – when I got home the other day the movie BRIAN’S SONG was on. Oh …. GREAT! Had to watch it though, right? And here’s what struck me. In the 1960s when the doctor said you had Cancer it was a death sentence. Cancer is more IN our control than ever. My movie is NOT going to end in a hospital room with Helene in the corner in a three way hug with Gale Sayers and Joy Piccolo. It’s just not.

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I just wanted to get a quick note out to everyone tonight because it’s back to school night and as difficult as this is for me, Helene is the one who faces the community day in and day out. I am doing fine. I feel a thousand times better than I did Monday. I am not going to go to BTS night tonight so I can conserve my energy.

As soon as I hear anything at all about the next treatment regimen I will update the blog. It is obviously very fluid right now so I don’t want
to speculate. There are many facets of life to coordinate as well so I don’t want to be too vague and leave things up to interpretation.

Thanks for all of the support everyone. It’s time to take back my rightful dominance over Cancer again. #betterdaysahead – MUCH BETTER DAYS AHEAD.

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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