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.

8/10/14 – Strength

Picking up where we left off last week …

When we last left I dropped Victor off at baseball camp, did my presentation at the conference and then drove back to NYC for treatment Monday and Tuesday. The week only got busier.

Long story short – I haven’t had chemo infusions for a long while. Everything has either been oral (Pomalyst) or a shot (Velcade) so I wasn’t prepared for the inevitable bloating from the Carfilzomib I went back to receiving. I felt horrible on Wednesday – not to mention the EXCRUCIATING back pain I was in. The back pain has gotten so horrible that if I am sleeping four hours a night it is a gift. I literally have to wake up and sit up at the side of the bed every 60-90 minutes because it hurts too much to lie down. What the … ?

But we aren’t going to let a little Cancer slow is down now are we … ? OF COURSE NOT!

Thursday night Helene and I drove back down to Baltimore to pick Victor up at camp where he won the RIP award – for RESPECT, INTEGRITY AND PERFORMANCE ON THE FIELD.

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During one of of my sleepless hours in the hotel Thursday night, I read a bunch of articles that spoke about back pain – EXCRUCIATING back pain – being a side effect of Pomalyst. The interesting thing is that my back feels fine during the day but about an hour or two after taking the Pomalyst it starts to hurt and by bedtime it gets intense. OK … a silver lining … the pain could be attributed to the medicine working and getting me better. I will take it. I will await the MRI results Monday to confirm.

BUT – no slowing down for us. We spent three days with a film crew this weekend making a short film for the MMRF. I don’t want to give it away but I was selected to be the subject of a short film about Myeloma, Myeloma patients and the great work of the MMRF. It is a big time project with lots of ambition which will debut (I think) at their gala fundraiser in early November.

The subject of my film is STRENGTH. We filmed all over town. Our house, the JCC, Kehler, the barber shop, the baseball fields and then spent Saturday morning in Manhattan on the subways. It was cool being followed around New York City by a camera crew for the morning. I felt like a TV star.

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STRENGTH not only refers to my drive and determination but to the STRENGTH and support I receive from family, friends and colleagues along my journey. The film is being woven through THE ROCKS. For those who don’t know about THE ROCKS, please click here to read about the amazing strength and support my community gave me as I headed in for my stem cell transplant last January.

STRENGTH is everything to me. We changed some things last minute on the film schedule as the director decided he wanted some shots of our fabulous friends and community. On our way home from Baltimore he called us and asked us to invite some friends over for a barbecue and swim in our backyard. I guess he heard about my grilling prowess and the Coustan raves that get thrown every weekend at our house in the summer. OBVIOUSLY A BIG PART OF OUR LIVES. Our friends came out in droves to take part in the scene. The director was amazed that our community rose up at the last minute to help out. But seriously – you can’t make a movie about us without a scene of me at the grill, right?

Best part of the night? Dr. R (Center for Acupuncture and Herbal Medicine) brought over his full size heating mat for me to lay on the bed and sleep on. OH MY FREAKIN’ GD! I feel so much better at night now. Actually getting in the full six hours!

So … let’s recap the week: Two trips to Baltimore, Chemo, MMRF film shoot, BBQ and a Yankees game with the family. All with back pain that would sideline an ordinary man. Today (Sunday) we have a birthday party for my brother in law and then I have the first of six fantasy football drafts I am in.

Oh … and by the way … I was the leading money raiser for my company this week. Not too shabby.

One more by the way … I put out two articles on fantasy football for FakeTeams.com as well. Even if you don’t like football, I think you will enjoy this one:

http://www.faketeams.com/2014/8/6/5973339/for-the-love-of-the-game

Is that all you’ve got Cancer? That’s it?

STRENGTH. I’ve got it. But it comes from all of you. The ROCKS. The ROCKS keep me supported, grounded, motivated and feeling loved by everyone who stands with me (us) in our battle.

STRENGTH. Sometimes it comes in unexpected ways. When the film crew dropped me off yesterday to go meet the family at the Yankee game, the director gave me a hug, shook my hand and placed this inside it. We will add it to the rock jar. One more stepping stone toward remission.

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8/6/14 – Flava From Ava

Many of you were able to access this through Twitter or Facebook but I was told that some were not.

Click here to read some of the most beautiful words ever to come out of a 10 year old girl’s brain – with a whole bunch of emoticons to enhance.

If the link doesn’t work you can go to the menu and click on Flava from Ava

Some Flava from Ava | bradstrong https://bradstrong.me/some-flava-from-ava/

Unreal! Love you kiddo!

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8/4/14 – Back to the Future

Today I started a new cycle of an old drug.  Dr. J and I decided on Friday afternoon that it was best to go right back to Carfilzomib, which I got a great response to, than to go off all chemo for 30 days in order to enter the clinical trial with Panibinostat.  Since my numbers came back and the Kappa Chain proteins were high, I was not comfortable forgoing chemo even for 30 days.  Also, as I mentioned in the last post, my back was beginning to hurt again.  I do not want to take any chances here.

The logistics were tough – they are never easy – but this time in particular because I knew I wanted to get in for treatment right away.  You see, Sunday Helene, Ava and I were supposed to drive Victor down to Baltimore for Cal Ripken Baseball Camp.  I had a conference in St. Michaels, MD so the three of us were going to spend a couple of days at the Inn at Perry Cabin for my conference.  I thought it would be great for the three of us.  However – Cancer has its way of mucking up the best of plans.  Since I was going in for treatment today (Monday) it would mean that we wouldn’t be able to stay at the conference.  Helene suggested that one of us drive Victor down.  She offered to do it so I could rest my back and get ready for Monday’s treatment.  However that would mean that I miss my speaking time at the conference which was Monday AM at 10:30.  

I think it also would have freaked Victor out a bit if I didn’t drive him.  He knows my back has been hurting (I hope it is from too much golf by the way) and he can put two and two together.  If we tell him that I can’t drive him because I am staying behind for treatment he will really freak out.  Last time he went to Ripken Camp his dog died while he was there.  I don’t want him going away for a week thinking his dad is going to die!

So although Helene was great in offering to take that weight off my shoulders (or my back) I declined because of two things:  First – The words “skip a meeting” aren’t in my vocabulary and Second – it is too important that my kids see me strong and unimpeded on my rise to remission.  Life does not change because I have Cancer – at least not that much.  Cancer does not define me.   I define me.  Or maybe I should say I define me to the best of my ability.

So – off we went – Victor and I on Sunday afternoon – down the New Jersey Turnpike, stopping in Philadelphia for the original Pat’s Cheesesteak (not on the nutrition plan) cutting off the corner of Delaware and arriving in Baltimore to drop off Victor.  Then I drove another two hours to St. Michaels, did a little dinner time schmooze, popped a few percocets and off to bed.

This morning I woke up, did my presentation (killed it by the way) drove through Maryland, Delaware, New Jersey and into NYC for the first infusion of this cycle of Carfilzomib.  Heck if I can’t kill Cancer, maybe I can just outrun it!

For those who are asking, I feel great still.  Back is a little better.  I also enjoy the night time/late afternoon vibe at Mt. Sinai.  It is a little less hectic.  I think I was the last one there.  I asked them if I needed to turn out the lights and lock up before I left.  So – for the next few months it will be Mon/Tues Carfilzomib and Dex – (and a shout out to my Myeloma buddy Suzie I am getting the highest dose!)   Every day 1 Pomalyst pill.  3 weeks on 1 week off for both.  I think it should do the trick.

Lots going on but we are on top of it.  The SILVER LINING in all of this?  Ava and Helene are spending two days in Manhattan for some Mommy/Daughter time.  I have been following their path on Facebook and they are loving every minute of it.  Who knew there were so many cupcake/candy/chocolate stores in Manhattan.  I think they have hit them all!

I talk about putting on a brave face for the kids.  I talk about the kids a lot and how they deal or deny my diagnosis.  I never give enough credit to Helene.  It makes me smile to see all of their pictures and smiles as they eat their way through the city.  Caregivers deserve acknowledgment too.  Helene needs a day off or two every once in awhile as well.  I couldn’t ask for a more caring, thoughtful wife.  I am happiest when she is happy.

Back to Mt. Sinai tomorrow for a late infusion.  4:00 PM – anyone for a game of cards?  I will be there until about 6:30.

7/30/14 – Dr. K and the Amazing T-Cells

Today I spent all day at Memorial Sloan Kettering Cancer Center in New York City meeting with Dr. K who is conducting a study on allogeneic (donor) stem cell transplants.  In case you forgot from my previous writings, we decided to perform the autologous stem cell transplant in January.  This is where I use my own cells.  The allogeneic stem cell transplant is where we use a donors cells.  In my post from June 8, 2013 – My Trip to Hackensack I talked about the differences between the two and how even though the allo SCT could be a potential CURE… yes CURE, there is a 15-20% chance the procedure itself could kill you.  That is from something called GVHD or Graft vs Host Disease.  This is when the donor cells attack your own immune system.  Dr. K’s trial is to perform an allo transplant and inject the T-Cells later in the process.  It allows the body to get comfortable with the donor cells and then the T-Cells, when injected, can focus on fighting Myeloma cells not healthy cells.  I am probably getting that backward, upside down and sideways but I am trying to keep this in layman’s terms.

He has performed 75 of these types of transplants and only 6% of patients developed GVHD and all of those were mild and treatable.  Those are pretty good odds!

He also told me a story about one patient who had this T Cell Depleted Allo Transplant and relapsed shortly afterwards (within one year) so they just injected more T Cells in him and now he is in remission for six years.  

The great thing about this transplant is that – YES – it is potentially CURATIVE.  It also requires no maintenance chemo like an autologous SCT does.  So once I have this procedure, IF I choose to have this procedure, I will not be on chemo for the rest of my life.  That being said, if I relapse this does not PRECLUDE me from trying other drugs, newer drugs that may develop over time.

He is also now reengineering the T Cells before he puts them back in which means that he gets them in a petri dish, stirs them up and engineers them to fight MY particular brand of Myeloma.  Remember – everyone’s Myeloma is different.  Dr. K can – in the petri dish – engineer these donor T Cells to fight MY MYELOMA!  Those are some magic T Cells!

So… what are the drawbacks?  Welp – it is a TOUGH procedure.  One month in the hospital, three months recovery and (they said although I think it is bullshit) nine months until I am back doing physical activity like working out, skiing, golf etc.  But make no mistake about this – I am not underestimating the process.  It will SUCK.

So … what came out of this day of appointments?  I signed a consent to allow them to start to search for a match.  At MSK they do a very careful selection of potential donors.  They seek to match 10 out of 10 markers.  If they don’t match 10 out of 10 we will not do the procedure but the odds are very good in an international database with hundreds of thousands of potentials.  Many of you asked how you can donate.  I will first say that if you donate your stem cells can not be directly given to me for my benefit.  Unless you are immediate family everything is anonymous.  That doesn’t mean that you can’t support the entire cause if you desire.  There is a website called BETHEMATCH.ORG if you want more information on how you can save someone’s (mine?) life.  Wouldn’t it be funny if you were called to Sloan Kettering to donate on the same day that I was admitted for my transplant?  Hmmm…thinking about all my friends in the neighborhood and whose stem cells I would want inside me?  Remember this Seinfeld episode?

As I always say, never EVER lose your sense of humor.  

Now MY job is to get on a plan with Dr. J – either Carfilzomib, Pomalyst, Dex or Panobinostat, Revlimid, Dex that leads me as close to remission as I can get so I have the OPTION of this T Cell Depleted Transplant.  And that is just what I want it to be – an OPTION.  I want to pursue this in the hopes that it can CURE me.  I want to pursue this on MY TERMS.  And I want to pursue this on MY TIME FRAME.  One of the things I have learned about Cancer is that it is very inconvenient.  You can never really time it right.  That is one of my goals.  If Cancer is going to keep attacking me I will fight back but I will take control of the time.  Keep coming at me Myeloma – its only a matter of time.  You will LOSE.

Thank you to everyone who commented, texted, emailed and phoned over the last week.  I have a great support system and feel very loved.  I am grateful to all and I love you all back.

#bradstrong