Myeloma Mondays #47: Mark from West Orange, NJ (dx at age 19!)

Hi, my name is Mark Barnas and I am almost 7 year survivor of Multiple Myeloma from West Orange, NJ. Heres my story!

Where were you born and raised?

• Born and raised in West Orange, New Jersey

Where do you currently live?

• West Orange, New Jersey

When were you diagnosed and how old were you?

• Official Date of diagnosis was January 25, 2007 ( 19 years old!! ) 

Did you know what MM was prior to diagnosis?

• Not a clue! Never had heard of it!

Is there anyone else your in family with MM?

• No one in my family has ever had nor had heard of Multiple Myeloma before 

What led to your diagnosis?

• Plasmacytoma found by my girlfriend Gina on my right second rib. 

How many times were you referred before actually being diagnosed?

• Once.  Originally my thoracic surgeon put it at 70-30% of it being a benign tumor based on CAT scan results.  However, doctor advised to have tumor removed and biopsied during surgery.  My first out of 3 surgeries within 7 months during my sophomore year of college was the Rib Resection (Jan '07).  Tumor was biopsied on the spot and was determined to be Multiple Myeloma.  Woke up in intensive care to doctor advising me that it was MM.  Second surgery was a Chest Wall Reconstruction (Mar '07), alloderm mesh was inserted into void that was created by removing rib (surgery was a complete failure).  It was determined after that surgery failed that I would need a 2nd Chest Wall Reconstruction and 3rd surgery overall (Aug '07).  Doctor inserted large piece of gore-tex into void and surgery was successful and I regained most use of my right arm due to surgeons ingenuity in not having to cut my Pectoral muscle at all and overall luck. Then oncologist advised me to have 15 radiation treatments to get whatever the thoracic surgeon had missed.
• I went over 6 years without any other treatment because my M-spike went from 2 in Jan '07 to about 5.5 in Apr '12 with no CRAB symptoms other than rising Mspike.  I had preventative pet scan in Sept '11 and they found a couple lyctic lesions on my hip.  I had a BMB in Apr '12 which it came back at 75% myeloma cells and it was then determined that i had to start treatment right away.  However with low risk disease no need to do transplant right away.  

Where have you received treatment?

• St. Barnabas Hospital, Livingston, NJ
• St. Vincents Hospital, New York, NY
• Mt. Sinai Hospital, New York, NY

Explain your treatment history:

• Jan, Mar, Aug '07 - 3 separate surgeries 
• Aug, 2007: 15 radiation treatments
• May 1, 2012: Started RVD
• Sept 6, 2012: Completed 6 cycles of RVD (about to be complete remission)
• Late Sept, 2012: Stem Cell Harvest Planned for possible Auto-SCT within next couple months or go on Maintenance Revlimid Therapy.  BIG DECISIONS COMING SOON!!! ;) 

Why did you or your doctor choose a specific treatment?

• Dr. Jagannath is a big believer in not going straight for the transplant and that we could use alternative maintenance therapies to lengthen my life and keep the quality of life at a high level.  I truly believe that I might be able to to avoid having a transplant within the next couple months from today and could postpone it a few more years but I know eventually I will have to have it and go through it regardless.  I am mostly scarred of the unknown since I am so young and there is no set way to treat MM.

What has been the side effects of the different treatments?

• Surprisingly, I have had no side effects what so ever with RVD except weight gain (which I actually enjoyed) and lack of sleep from Dex.

What has been the hardest thing about your MM journey?

• Being diagnosed at 19 and not having a clue what I was getting myself into.  Going to college while all this was going on was no easy feat.  One day I was raging with no care in the world and then the next day my whole world was turned upside down.  Most of my friends were there to support me and luckily my doctor in NYC was close to my college so I was able to go to school while going to get surgeries and treatment.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• As my dad always said since I was diagnosed "Mark, the sun will always come up tomorrow and you should enjoy every sunrise."  "You cannot control the uncontrollable so why try" 

How have you been able to stay positive and encouraged in your MM journey?

• I truly believe that they will find a cure for our disease soon,  The support from my family and friends have allowed me to not focus on the vast ups and downs but on the bright side of living life to the fullest regardless of the ride.  I know that we will all live long and prosperous life no matter the length of time here on earth.

After being diagnosed... What perspective was changed the most?

• Learning to enjoy EVERY moment and that this disease while it created havoc in my life, has brought me so much closer to my family, friends, and my girlfriend of almost 9 years.  She was there for me from the beginning and the entire time since and to this day is there to support me mentally and physically.  She is the rock in my life and has climbed mountains during this journey.  Her positive outlooks on life along with my families allow me to see beyond the bullsh*t we have to deal with on an almost day to day basis with MM and look at the larger picture.  Life is a long journey and we should all enjoy the RIDE!  Stay Positive!!!!  Do not take anything no matter how small for granted! 

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• No

What MM sites or blogs had you found good information from after diagnosis?

• MMfordummies
• Stupid Cancer

10 years later...

10 years later and I am starting to think…maybe life is more about the misses…than the makes.

Like a brilliant diamond, it was the thousands of cuts, that made it so magnificent. It’s the refinement process that produces beauty.

ESPN’s top play of the week referred by many Michigan fans as simply “The Kick”, contains more than a singular kick. Actually, there were plural “kicks” in the game that led up to the one that most remember.

I still recall folks telling me after the game that one day people will forget the misses, and only recount how they felt as “The Kick” from 44 yards out, with ESPN College Game Day nearby, split the uprights to give Michigan a two point advantage as time expired in front of 110,000 screaming fans.

I still have the ESPN sport center game review and I find as much meaning in The Kick, as I do in what I will dub “The Misses”…and a couple of them being big misses.

The first miss came in the first quarter. The Wolverines had broken out into an early lead thanks to the legs of Chris Perry. On 4^th down I was called in to attempt an average field goal attempt of 37 yards. Good snap, good hold, wind at my back…but wide left. Directly into the student section.  I was a little stumped by the outcome because I thought I made good contact, but during film review the next day revealed that I brought my head up to soon which caused me to hook the kick.

The second miss, well….the term wide left doesn’t do it justice. ESPN Sport Center commentators referred to it as a “wounded duck.” At that point, fans would rather have put stock in seeing their first ever flying pig before they saw me kick a pig skin through any uprights.

Well, after recovering in the locker room after a shameful and down right ugly start to my career as a placekicker at the winningest college football program in history, my fate was looking gloom, quite contrary to the hot, bright sunny day that was Ann Arbor that day.

Warming up before the start of the second half resulted in even more embarrassment as every kick continued to go wide left, but this time each one soaring into the hands of a 19 or 20 something kid that shared that same title as “student” as me. They were my peers, but they were not forgiving of my performance. They began to boo as I had a difficult time kicking the ball straight.

Wisely and maybe a little influenced by the booing fans, my special teams coach decided to bench me for the second half and go with my back-up and best friend to see if luck in the kicking game could change. He too, was also very unproven and had never attempted a kick in the big house during a game.

After scoring a touchdown in the third, his first ever extra point soared through the center of the uprights, which brought a roar from the crowd that almost equaled the sounds you hear as a player when you run out of the tunnel to jump and touch the banner.

The fans were rallying around the new found hope in another kicker, and my stock fell lower than what was experienced by the Big 3 a few years back.  I was down and out, and if it wasn’t for my powerful leg on kickoffs, my career at Michigan may have been short lived, described by a couple of missed kicks, one that most fans could have out performed.

Well, as the game went on the two missed field goals (6 points) started to feel a little more painful as Washington kept the game close and even took the lead at different points. With several minutes left, Washington scored a touchdown to take the lead, 29 to 28.  At that point, most fans were probably strategizing their plan to lynch, tar and feather me. Hmmm…should we nab him before he goes into the locker room or grab him on his way out.

Fortunately for the fans, John Navarre and Chris Perry were on fire that day and led the team back down the field with 1:27 remaining on the clock. With a failed third down attempt, it would come down to a kick from 27 yards out.  Nothing more than a chip shot for a kicker who had been perfect on extra points. This only being 7 yards further, didn’t seem to present many problems.

The kick did not sail wide left, rather, it just missed wide right.  The fans were in utter shock. If there was any reprieve for me after that miss, it was the simple fact that I was no longer going to have to fear the headlines in Ann Arbor News kicker lynched….because at this point my best friend and one time back up kicker was going down with me.

With little time remaining and no kicker who can make a field goal, the only hope found in that stadium was in the word…hope-less. The Wolverines took the field on defense to grind out the remaining seconds, with the only thing going for Michigan was the three timeouts they had left. A Washington first down at this point, would end the game, and solidify the kicker(s) lynching.

With a stop on the first play and a quick timeout, there may have been some fans who started to walk a little slower as they tried to be the first escape the mass exodus from the Big House; trying to beat traffec on main and state street on their way to I94 or US23.

If there was any hope in moving the ball with no timeouts it dissipated quickly as John Navarre had difficultly finding a receiver. With 9 seconds left, some fans started kicking themselves for not leaving earlier.

Washington, wanting to make sure they were perfectly prepared for any last second heroics called their final timeout to put in just the right package to ensure a victory over the #10 Wolverines, for the second year in a row.

Their package worked perfectly as John Navarre overthrew everyone, including the 12 Washington defenders that were on the field. With five ticks remaining on the clock the official picked up a yellow flag signaling this grave error by Washington, and eventually announcing that 12 Huskies were on the field, one too many...all of this following their timeout, of all things.

The official marched the field a full 15 yards closer to the uprights, the ones that were in throwing distance by half the student body. The distance from the uprights was set at 44 yards, left hash. It was still no easy kick, especially by two kickers who still hadn't made a career field goal in three earlier attempts that day.

With not enough time to do eeny-meeny-miney-moe, Coach Carr had no choice but to call #34 (Phil Brabbs) into the game because he had a stronger leg, which gave a slight advantage for him over the guy who just missed the last kick.

Although the Big House had been witness to many college football games for decades, it had never been home to a game winning last second field goal, oddly enough. There was a shot at it this day, but the odds were more in favor of a former soccer player randomly picked from the student body making this kick than anyone sporting a winged helmet from the sidelines. 

So at a moments notice, Coach Carr told me to get into the game and attempt a kick that could redeem both kickers for the day.  I took my steps back and to the left, recited Phil 4:13 as I always would do, motioned to Navarre to take the snap, and then headed toward what would end up being my most defining moment as an athlete in the thousands of hours of competition I had totalled...and this play would only last 5 seconds. Talk about pressure.

That kick was up and extended over two Huskies defenders that were reaching for the sun, and as I looked up, I saw the ball sailing perfectly through the uprights (watch it here). All of a sudden time seemed to stop. I couldn’t hear a thing, probably because the stadium feared an inevitable outcome of a fourth missed field go attempt by the guy who botched two in the first half.

Then, as both refs motioned that the field goal was good, I entered back into reality, probably when my 6'6" QB and holder started to grab and shake me like a rag doll. The reality that something big hit us both and every fan in that stadium at the exact moment, and I (or my right foot) was part of it. I knew instantly that this wasn’t just my first career field goal, but this was something that was going to be imprinted on Michigan Football history for years to come, just like the game announcers had commented.

After being pulled from the bottom of a 100+ person pile on at the center of the Big House, which I would have been content with being my final resting place during that moment, I was found smiling and screaming with joy. The picture to the right shows just how charged I was in that moment. 

After my rescue from the bottom of the pile, I was instantly swarmed by the press. I recall the media shoving all their microphones towards my face as if I had the solution for world peace on the tip of my tongue and I was about to share it to the whole world. As most of the team returned to the locker room to sing The Victors, which is a great Michigan football tradition, I needed to be rescued. So none other than D-line coach Brady Hoke came to my side to pull me through the barrage of press. To this day both of us have the photo the right on our office desk. 

Well years have come, a full decade worth to be exact.  That play was determined to be with of the top 20 in the Big House. So yes, it indeed was a very big moment. For me, it gave me hope in the impossible. It taught me that in what can be your weakest moment, hope can ride you through the dark night and carry you through. That you can go from goat to hero in this world in a moments notice. That you need to remain positive when surrounded my negativity.  That those closest to you: your teammates, family, friends, will be there when you are in the middle of the improbable fate that looks to lead to know where but devastation.

But in this entire game experience that led to The Kick, I am now thankful for the misses, because to this day, they are helping guide me through some of life’s toughest challenges. Yeah, football is just a game and those were just a couple of kicks, but the emotions I experienced were real and it was on a stage were millions were glued to the outcome.

Let’s raise our glasses to the many misses we have in life, whether missed field goals, snaps that got away from you or an occasional botched hold. Those dark moments may just be the predecessor of a really great moment. So hold on, keep the faith, remain hopeful and expect the impossible.

God Bless and Go Blue!!! (10 years later)

-Phil

P.S. #BeatBama

un(Like) Cancer Day

One thing I have realized about living with and being around those affected by cancer, is it has the tendency to pull out a lot of raw emotion. Although I try to steer towards positive emotions by driving on the path of optimism, filled with hope, I at times will hit a bump in the road, that sends me a little off track.

This was one of those weeks where Myeloma got under my skin. To be honest, I can probably count on one hand the times Myeloma pissed me off. I can’t explain for certain why this count has been so low, but I have my theories. One being, I have personally chosen not to “fight” the disease in the traditional sense. I am not looking to muster up additional gusto to “battle” with Multiple Myeloma. Rather, I am choosing to #dominateLife, which may help me to be more positive and not get pulled into the negative thoughts that surround anyone fighting to live for another day, week, month or year.  The struggle for me is held deeply within as I try to live a life that contains passion and fulfillment to a greater purpose; clinging the moments and time that I can still have a little say in.

BUT, then every once in a while the raw emotions such as anger and sadness will come knocking on my door; and they are unavoidable. I struggle to contain these emotions because I don’t have much experience in this department. Simply put, I feel mad and sad at the same time and I don’t know which came first. I do know that the root of it is watching others with Multiple Myeloma (and cancer in general) get knocked off the road and at times crash very quickly and painfully. The longer on this journey, the more I am presented with the reality that people die of Multiple Myeloma, and they die young.

Keep on the path, be real and dominate what life you have left,

-Phil

#CancerKicker

anatomy of a cold or two

We used to be SO GOOD at this, you guys! Hand sanitizer everywhere, no face-touching, wash wash wash those hands... and we avoided lots of little sick germies. Sadly, I've been slacking in this department lately as evidenced by the awful summer colds (yes, PLURAL) that we've all been passing around.

The biggest lasting, perceptible physical change in Phil since his diagnosis and subsequent treatments has been his lowered immunity. For someone who never used to catch so much as a sniffle it is disconcerting to have him come down with every nasty bug that the kids bring home. And often he brings it home first. And then he shares. By choosing to lie on my side of the bed. But that's beside the point.

Here's a rough representation of how things have looked here the last few weeks:

Day 1: Ocean wakes up with green junk in his eyes. He begins coughing and complaining of an ear ache.
Day 3: Iris wakes up with green junk in her eyes. Both kids get diagnosed with pink eye and Ocean has an ear infection.
Day 6: Phil starts coughing.
Day 7: Ocean complains of ear pain in the other ear. Yup, another ear infection.
Day 8: Phil wakes up with bloodshot eyes and, you guessed it, green junk. Still coughing. A lot.
Day 9: Ruby has green snot and a cough. (Note my fatal mistake... I thought this was the same coughing bug from Day 6 but OH HO HO NO it wasn't. This was bug #2.)
Day 10: Cassie starts coughing. (Bug #1)
Days 11-14: MISERY.
Day 15: Ocean starts coughing. What the..... didn't he start all of this?!
Day 16: Cassie starts with the runny nose and sore throat. (Bug #2)
Day 17: Iris starts with the runny nose and cough. (Is it #1 or #2?! 1 OR 2?!?!?! There's no way to know!!)
And here we are on Day 18. In bed, watching movies, drinking lots of fluids and praying that #1 AND #2 quickly and quietly make their way to the nearest exit.

I guess this is probably normal for households with kids, and there's no way to know if things would be different had Phil's immune system not taken a thrashing but I guess I notice it more because I'm not used to Phil coming down with the crud. I suppose it's time to start being more proactive in our preventative measures again, especially with Phil back on chemo.

I wish you all a healthy, germ-free weekend!

The Day + 4 Years

8.8.08 seems like a such a special day. One of our close neighbors gave birth to her son. It was just a day past my 28th birthday, but for us, it was a wake up call to something our doctor called Multiple Myeloma. We were confused, lost, and in utter shock. We didn't know where to go from there.

Well, four years have past and I can say with ease, I hope we never have to go through that again! It's been a roller coaster of a joureny with many emotions, several scary emergency room visits, a ton of stress, plenty of chemo and much uncertainty.

But, we are still here. We continue to make family our priority and grip everso tightly to the hope that the Myeloma will not return to my body.

I am so greatful that in the last four years I have been able to see Ocean grow into being a kid. Iris continues to impress me with her independence and ability to get whatever she wants, when she wants. And Ruby, wow, she was far from our radar at diagnosis, and now we have a two year old full of life and happiness.

Moving forward from today, our tanks are full, our children are healthy and we are geared up to dominate Multiple Myeloma for many more years.

Thanks to everyone for all the support, kind words, meals, you name it, over the last four years. Our continued domination goes hand in hand with all the love and support people continue to pour out on us.

Much love and continued domination to you in whatever life throws your way!

-Phil

Fatigue is nothing. Freedom is everything.

Yesterday I had my first check up since starting back on chemo maintenace a month ago. A regimit that is expected to last a minimum of two more years, or 23 months if you are like me and keeping track at home. When asked if I have noticed anything since starting back on chemo, the only response I had was fatigue. I prefaced that with several statements on how I have exercised more lately, the kids have been wearing me out and that I am staying up later. My terrific nurse practioner didn't bite on my ability to push aside possible relationship between the chemo and return of my fatigue. The response I got:

"Sounds like you are full of 50% optimism, and 50% denial." 

Man, she knows me too well. Maybe it's this combination that allows me to domiante beyond the true reality that I face each day with Multiple Myeloma. One thing that was not denied was that the results of my blood labs and my bone marrow biopsy came back squeeky clean once again. I am still free of Multiple Myeloma. #score #doMMinate

I have learned from others who have gone before with this disease that you can't let up, that you need to remain focused and ready to react. I believe this persistence will produce a cure and that I will find freedom from Multiple Myeloma along with a multiude of others.

Time for a nap.

#dominateLife

-Phl

Myeloma Mondays #46: Greg from Saranac Lake, NY

Where were you born and raised?  

• Saranac Lake, NY

Where do you currently live? 

• Castle Rock, CO

When were you diagnosed and how old were you? 

• 12/18/2009 – IGA Lambda Light Chain MM

Did you know what MM was prior to diagnosis? 

• No

Is there anyone else your in family with MM? 

• No

What led to your diagnosis? 

• Tumor on my left hip

How many times were you referred before actually being diagnosed? 

• First signs showed up in urinalysis, but family Dr. wasn’t sure what it was and didn’t push me to see anyone.  Turned out high # was a marker for MM.
• Saw family Dr (1.5 yrs later for hip pain)  Xray revealed nothing
• Went to PT for hip pain
• 3 visits didn’t make it better

• PT Sent me to Orthopedic guy – haPT Sent me to Orthopedic guy – had MRI
• Then to oncologist high # was a marker for MM.

Where have you received treatment? 

• Colorado Blood Cancer Instittute (CBCI, Denver, CO)

Explain your treatment history:

• 12/18/2009:  Initial diagnosis
• 01/2010: radiation of hip tumor
• 01/2010 – 07/2010: Rev/Dex
• 07/2010: cytoxin in prep for auto SCT and collection
• 08/04/2010: Melphalan – Day-0, auto SCT begins
• Short-term disability from work until 10/05/2010
• Numbers begin to creep back up steadily over the next several months.  
• 10/2010 thru 6/2011 – Back on Rev/Dex
• 06/2011-09/2011: Rev/Dex/Velcade
• Numbers come down to remission, go onto maintenanceat Velcade once/3wks, MM comes back strong and fast again.
• 10/2011 thru 2/2012: Rev/Dex again w/ Velcade once a wk.
• 02/2012 thru 6/2012: Thalomide w/ Velcade once/wk
• Numbers climb fast in May/June…decision made to do tandem auto/allo SCT.
• 07/16/2012: begin DT-PACE
• Plan is to get numbers down with DT-Pace and go into Auto SCT after 2nd cycle in 2 months; followed with allo-SCT 60 days post Auto-SCT.

Why did you or your doctor choose a specific treatment ?

• My Dr. is being aggressive with my treatment as I’m considered young (50 yr male) and historically have been in great shape.  Before MM I was consumed with cycling in my free time.

What has been the side effects of the different treatments?

• Fatigue, GI issues top to bottom, brain focus on drugs, general anxiety.

What has been the hardest thing about your MM journey?

• Uncertainty.  Fear to make long-term plans.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Continue to make long-term plans!  Plan to be around for a long time.
• Surround yourself with your good friends and family.

How have you been able to stay positive and encouraged in your MM journey?

• I know things could be worse.  I’m thankful for my 2 great kids, my family and friends.  I have an understanding employer, great insurance and found the time to be right for the nice sports-car I could never afford before.  Makes trips to/from the clinic more fun for sure.

After being diagnosed... What perspective was changed the most?

• Life is short and unexpected things can come into your life.  Don’t squander today.  The Serenity Prayer puts things in perspective…don’t fuss over what has passed, but instead live in the NOW!

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis? 

• No

What MM sites or blogs had you found good information from after diagnosis?

• themmrf.org

What mountains have you climbed lately?

One of my very first friends, Erik, tweeted the following photo of him recently on top of Castle Peak at 14,265 ft. Erik is currently a football coach at Michigan Tech, and without a doubt, was the first person in my life to exhibit how to dominate on a daily basis. Him and I competed in sports for a number of years before eventually becoming teammates through middle school and high school. He brings a tenacity to competition that I have never seen replicated at they same intensity.

I have yet to climb a mountain, but I have found this journey with cancer to be a similar experience. It is quite a hike and very dangerous at times, a wild adventure to say the least. If you choose to look down in the valley for too long, you can instantly be succumbed by fear and doubt.  You realize how fragile your life really is. But......

Through perseverance and the support of others, you keep climbing. One foot after the next. At times you focus on your breathing, and others, you just want to give up. But that's not a solution for those who choose to dominate. Rather, it's an opportunity to compete on the stage of life. And eventually, there's an opportunity to move from just surviving, to thriving. 

And although I have yet make it to the top in my own cancer journey, I must say it's because of people like Erik who have come alongside me and showed me what it means to dominate that I am able to keep so positive, and to remain competitive in some of the most challenging hours. 

What's life without climbing a few mountains along the way? When we get to the top, man, what a sight it will be.

#dominateLife

-Phil

Wearing a Ruby around my neck

Our family had our annual family photo shoot this summer and as I was scanning all the photos for the 9,482 time I got stuck on this one:

For me, this captures my relationship with Ruby and also possesses a strong reminder the role Ruby plays in our family. You see, at diagnosis, the hardest thing to swallow was the thought that my oldest child, Ocean Philip, would never grow old enough to have any memories of me. At the time, Ocean was 2.5 years old.

Almost 4 years later, Ocean is now six, 4'2" tall, and has a mean soccer kick he may have gotten from his daddy! To add to the beautifully unfolding story, we added a third child to the mix after a lot of prayer and some doubt on whether having another child before starting rigorous chemotherapy was the "right" thing to do.

Well, today that third child, Ruby, is almost the age Ocean was when we were handed the cancer card. We were told by one of the UK MM bloggers that rubies are known for their blood cleansing properties in many cultures. Ever since her arrival my cancer has diminished to the point where it is no longer detectable.















Beyond the mystical blood healing properities, our Ruby constantly wraps herself around us and reminds us to have a clean and joyful heart. She has the most adorable laugh and gregarious personality that we wish we could bottle up and sell on Amazon.

I will forever wear this beautiful Ruby around my neck.

#dominateLife

Phil

Only 544 more pills to go!

3 pills down and I estimate only 544 more to go! People are asking me if I feel any different just several days in to this two year maintenance journey and I don’t quite have an answer to that. I do recall the chemo I took over the last few years to have a more cumulative effect on me.

To counterbalance the side effects this time around my  plan is to to fight fatigue with exercise; or said another way, fight fire with fire! It may seem counter-intuitive, but I think it could help keep my blood counts at a more healthy level. Chemotherapy adversely affects the ability to produce normal level of new blood cells, hence the risk of infection (low white blood cell count) and low energy levels (low red blood cell count and hemoglobin). I am

Emotionally I have shifted my transmission to the dominate gear and I am filled with a lot of peace and hope about our future as we continue fly through this journey of uncertainty . We appreciate the continued prayer and support of many.

#dominateLife

Phil

Back in the (Treatment) Game

Ocean started baseball this summer. We spend many nights watching Tiger's Baseball. He is starting to pick up on the game and enjoys calling the Yankees "the scribbles" because their logo looks like scribbles to him. It's a joy to see him make many new friends and learn a new game and he is turning out to be quite the goof ball.

This week I am getting back in the maintenance game, after roughly 8 months off. I started back on 10mg of Revlimid for 21 days followed by one week off. Every three months I will be doing a cycle of Velcade for good measure. What's dominating cancer without some chemo cocktails...right???  I do miss all the folks on B1 at UMCCC...but now I get to see them every three months!

The gameplan is to follow this maintenance regiment for two years. It may seem kind of a crazy decision for someone who is in Complete Response (i.e. no cancer detection), but with Myeloma, we want to kick, crush and elbow drop from the high ropes this disease while we have it down. We don't just want to kick the disease down, we want to kick it down AND OUT... forever. We trust and believe this will increase our odds in this endeavor.

#domiante

-Phil

Myeloma Mondays #45: Tim from Geneva, IL (age 42)

Share your story on MM for Dummies!

If you would like your story of that of a loved one posted on MM for Dummies, copy and paste the questions below in an email and send your response to me at phil at cancerkicker dot org. Thanks for your willingness to share your story for others to grow in their knowledge of Multiple Myeloma!

My name is Tim, I was diagnosed with Multiple Myeloma in Feb of 2011.  My wife and I live in Geneva. IL with our two daughters.

Where were you born and raised?

•     Chatham, IL

Where do you currently live?

•      Geneva, IL

When were you diagnosed and how old were you? 

•       Feb 16, 2011 - 42 years old - Lambda Light Chain Myeloma

Did you know what MM was prior to diagnosis?

•      No

Is there anyone else your in family with MM?

•      No

What led to your diagnosis? (example: broken vertebra)

•     Anemia, first diagnosed as B12 deficiency.  Had B12 injections for 6 months with no response, referred to hematologist / oncologist who diagnosed me with Multiple Myeloma - High Risk d(13q), t(11:14).  No bone lesions.  80-90% Plasma cells in bone marrow biopsy.

How many times were you referred before actually being diagnosed?

•      One

Where have you received treatment?

•      La Grange Oncology - Geneva, IL
•      Rush University Medical Center - Chicago, IL

Explain your treatment history:

• 3/2011: started RVD
• 6/2011: Completed 4 cycles of RVD with complete remission 
• 7/2011: Autologous Transplant #1 (In Process)

Why did you or your doctor choose a specific treatment?

•     Doctor stated with high risk Myeloma needed aggressive treatment.  Doctor stated based on my age and good health SCT is the best option for long term survival.  Induction along with SCT are currently the standard of treatment for Myeloma based on NCCN guidelines.

What has been the side effects of the different treatments?

•     Dex has been the worst with hard time sleeping, then the crash.  I would average 4 hours of sleep on Mondays, the day I would take 40 mg of Dex.  On Wednesday and Thursday I would be tired and depressed.  Dex also gave me acid reflux and I would become hoarse a day after taking the Dex.   The doctor suggested taking Zantac on the day I take the Dex and for two days afterwards.  This helped with the acid reflux and hoarseness.

What has been the hardest thing about your MM journey?

•     Telling my 10 and 15 year old daughters I was sick along with preparing for the worst, going over the will and life insurance policies.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

•     Don't read old information from the internet, there is great hope with new drugs.  Stick to reputable sites for research like MMRF and IMF.  Also keep track of your own test results, nobody cares more about your health than you.  Drink lots of water to keep your kidneys functioning.

How have you been able to stay positive and encouraged in your MM journey?  

•      The first month was the toughest, felt like it was over.  After that I became much more positive.  I read the book The Anatomy of an illness perceived by the patient by Norman Cousins, this book helped me stay positive.  Positive energy itself has it's own healing powers.  My doctor at Rush helps me stay positive, he believes the novel therapies could be the cure.

•    Have a good support team, you will need someone to bring you up when you are feeling down.  Talking about the disease to your support  team helps you cope.

After being diagnosed... What perspective was changed the most?

•     Priorities in life and fear.  As the Tim McGraw song states Live Like You Are Dying.  Have no fear and do all those things you feared to do, even if you are cured do those things and never look back.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

•      Parents no, I used to do a lot of wood working and home projects, which included painting and staining.  I often wonder if epoxying my garage floor could have had anything to do with my Myeloma.  The epoxy chemicals were very strong, and looking at a series of blood test results, something occurred about the same time I epoxied my garage floor.

What MM sites or blogs had you found good information from after diagnosis?

•      IMF
•      MMRF
•      Myeloma Beacon
•      Multiplemyelomablog.com
•      Nvdmyeloma.blogspot.com