Would you go for two?

Many people tuned in to the epic game between my love, Michigan Football and their bitter rival, The Ohio State last Saturday. It was a battle, both teams pushing hard towards victory. For Ohio State, their National Title hopes were on the line. For Michigan, restored dignity and a final home game for the Seniors who undoubtedly wanted to end their regular season and last home game on a high note, beating the Buckeyes.

So how did it end? Well, Michigan displayed it's usual last minute heroics and drove the field to score the game tying touchdown with seconds left, assuming an automatic extra point from the kicker.

But wait....they didn't bring out the kicker. In stead, the offense is on the field and they are showing signs that they are going for two! Wow, they make it, it's a historic win, if they miss, well...they lose to rival Ohio State in dramatic fashion. I was at the game....the air got very thick in anticipation.

Ohio State not ready to handle a two point conversion, calls a timeout.

What does Coach Hoke do? Does he second guess his decision and put in his kicker knowing that Ohio State just burned their last timeout, knowing with in reason that this game has a very strong chance of going to overtime?

No. He turns to the Seniors and asks (paraphrased): "Men, what do you want to do?" Unanimously, they wanted to go for the WIN!

Of course, they go on to miss the conversion and Ohio State sneaks out of the Big House with a one point victory.

This week I have let the decision to go for two really sink in, along with the final outcome, and I have learned a lot about myself.

Mostly, I have learned that I am a "Go for Two" kind of guy. I pursue life wanting to take every moment to win right then and there, not hold out for a what-may-be victory. I want to seize it. I want to experience it...Now.

This can explain why I put my body through 3.5 years of treatment, including 7 cycles of a very nasty chemotherapy regiment, followed by back to back bone marrow transplants, 7 more cycles of chemo, followed up by maintenance chemotherapy.

This also explains why I am uneasy about seeing a trace amount of Myeloma in my blood. The current medical staff at UMCCC is not happy about the results, but there also isn't a sense of urgency, a sense that we need to go for two if you will.

I cannot escape my Go For Two personality. I want to win the Championship, I want to win the Big Game...I want to be cured of Multiple Myeloma. 

So where does that leave us? Oddly enough, I will most likely return to Columbus soon, yes, The Ohio State, to get some of their thoughts and opinions on where they think I should head. I also anticipate a visit or two to see Dr. J in Chicago and and Dr. Barlogie in Arkansas. Simply put, these Doctors are my 'Seniors' who I go to when I have to make the decision of whether or not to go for two...although I am like Coach Hoke, I always want to go for the WIN!

Go Bucks!!!

Okay, why would a Michigan Man, who has a block M tattooed on his heart, dare say Go Bucks the day before one of the greatest rivalry in sports takes place between Michigan and Ohio (State)?!?

Well...any place that wants to dominate Myeloma as much as I do has a room reserved in my heart.

It all started last Friday during a trip to The James (Ohio State's Medical Center) where I was meeting a couple of friends who shared the same passion to dominate Myeloma. They set up a meeting with Dr. Benson, Myeloma Specialist at Ohio State. They invited me, I accepted, and I soon found myself in enemy territory 8 days before the big game.

Dr. Benson offered to give my friend a tour of his facility, all his research and provide insight in how he intends to dominate Myeloma and find a cure.

With the last two blood tests showing a trace of Myeloma after almost two years of being cancer-free, I was willing to hear anyone out on their plans to kick Myeloma, even if it met traveling to Columbus.

The two hour time slot with Dr. Benson flowed over to three hours, and I must say, I left full of more hope than ever that the days of Myeloma are numbered, for me and the ~25,000 people in the US who are are diagnosed each year.

What I liked about Dr. Benson:

• His Attitude: He is a former collegiate soccer player who has quiet competitiveness about him. You can tell, he is this fight to Win the Championship...a Cure. 
• The Team: He has built a team  that consists of four Myeloma Specialists (that's a ton!) and 8 NPs (wowzers!) and has a number of bright minds in their graduate and fellowship program focusing on dominating MM. 
• The Innovation: Having self-identified as an entrepreneur over the last few years, I appreciate innovation, especially in the area of Myeloma research aimed at zapping MM! Below is a top secret photo Dr. B revealed to us that shows Myeloma being doMMinated..literally. The top photo is some happy go lucky Myeloma. The bottom photo is its obliteration. 

With all this new found excitement and support of The Ohio State' Myeloma Research, don't be confused, tomorrow I want the scarlet and gray to be dominated, just like Myeloma. The passion I have to beat Ohio on the football field is much similar to the passion to kick cancer, but I am grateful that the shared passion that fuels this college football rivalry can be used to work together to dominate Myeloma for everyone!

Just to bring some balance to this post so folks don't think I am at all becoming a Buckeye, I want to give a major thanks to Jim Brandstatter and Coach Hoke for giving me the opportunity to continue to raise awareness for Multiple Myeloma this past Wednesday at Pizza House. Both schools are working to doMMinate this disease. 

Remember, Hope is sometimes found where you least suspect to find it or the last place you would ever want to look. Keep Battling, keep the Faith and Go Blue!

Phil

Our New, Old Reality

So, the results are back from UMCCC and there still appears to be a trace amount of Myeloma showing up in my blood test. Bummer.

Bummer because....

....I was really enjoying staying awake past 7:30PM because I wasn't so dawg gone tired every night b/c of the chemo

....I was hoping my children would never have to really experience our families fight with MM

....I was not expecting any sort of relapse for at least 5 years, if not ever

....I stopped thinking about Myeloma for 9 months and it was bliss

....I don't want to have to go back on chemo

....I spent 3.5 years dominating this thing and I was hoping that would be enough

....I don't want to give MM any more mindshare 

....I want to live a normal life of a 33 year old with a young family

....my business is taking off and I don't want treatments to slow that

Here's the good news....

....it's a very small amount which should have little affect on my body

....it didn't increase since the last blood draw

....treatments and research continue to advance

....I have it's number and I am ready to dominate it again

Life is so interesting. It is so unpredictable. I thank God for the great family and friends that have been placed in our life to help us through this next stage of the doMMination. 

Keep dominating life in your own journey. Overcoming challenges just gets you closer to the prize.

Phil

Hope isn't a strategy...

..but it sure has been a motivator for me and my family as we continue to take on Multiple Myeloma, what is considered by most to be incurable.

Two months ago I got the difficult news that there may be a slight recurrence of the disease. This Tuesday I go in for labs to see if this is my new reality and whether the disease is again on the rise. Hope is powerful, it is critical and it's what helps push out the darkness in my life when this disease tried to pull me over to the dark side.

Life has been great, subtract my Michigan Wolverines struggling on Saturdays. My new job, which I took the leap of faith to join earlier this year continues to bring on new clients each month. We are always looking for more clients if you know anyone in sales and marketing who are looking to implement Salesforce or expand its capabilities! Like my new company on Facebook...one of my jobs is to grow our number of likes! :)

 Cassie and the kids are awesome. The highlight on the family front being our newest nephew who is already destined for U of M one day if his Uncle Phil has any say!

Finally, my health is great. For a while, my body continued to nag me every time I tried to go for a run. It seemed as if I pulled a different muscle each time I hit the pavement in my running shoes. Thanks to some great friends, I have transitioned to yoga. It's been a blessing and a great opportunity for me to regain physical strength, flexibility and even stamina...Yoga is no joke! I have also found the meditative peace to be very helpful.

Expect a post in two weeks providing an update on my Myeloma numbers. I am hopeful that they will be zero, but in the meantime, I will be dominating life with the family!

Those Who Stay...

Living in Ann Arbor with a strong tie to Michigan Football is both a blessing and a curse. I love to talk about The Team, The Team, The Team, but it can be tiring reminding fans not to worry about close scares like the games against Akron and UConn, undoubtedly two of the worst teams in FBS college football. This is part of the journey.

Worry not Michigan fans, but be patient. The road to a Championship is not easy, and there will be many mistakes and close calls along the way. One of the most critical factors in being successful is knowing the end game. With Hoke, it's been made very clear and simple, win the Big 10 Championship. A few of my teammates congratulated Coach Hoke after the Sugar Bowl win and a 11-2 record after his first year. His response, "Don't congratulate me until the team has reached it's goal, and that's win a Big 10 Championship!" Below is a picture from last weekend where my 2003 Championship team was honored. Next to me is Coach Carr, who apparently still has some hops left!

When I was diagnosed with Myeloma in 2008, I quickly returned to my Michigan Football indoctrination which occurred over a five year span. I didn't just want to win the 2000 Orange Bowl or beat OSU, I wanted to win The Championship, which at that time and still is a cure from this disease.
Great news came over a year ago when I finally got a negative test result, my body was free from the disease at last. OSU had been beaten, The Championship seemed near and almost inevitable, we now just had to stop the chemo and hope for the same negative test results for 6-7 years.

The week after the Akron game I got a phone from my wonderful nurse practitioner. I was caught a little off guard because she doesn't typically call me to give me my lab results. She began to share with me that the blood test came back with a very small trace of M-protein, which is an indicator for Myeloma. Wow, I really didn't know how to respond. I was quite shocked to get the news.

After talking it over with Cassie, we decided together not to get discouraged. I now recall the scare against Akron, then UConn. This was similar, but much more personal. So what does this mean for me? Absolutely nothing as of now. Rather than wait 12 weeks for my next round of labs, I will be tested in 6 weeks.

Cassie and I question the results a little bit given that two years ago I had a spike of 0.1, which U of M referred to as a mono-colonal band of protein, whereas, UAMS (Arkansas) said it was poly-colonal (not MM related). Part of us wonders if this is a healthy band showing up, or whether it is truly a slight resurgence of the disease. Either way, we will have to wait for more data to know what is truly going on.

You know, winning a Big 10 Championship was never easy. It was 99% blood, sweat and tears, for that short moment 1% celebration. For my family and me, we will continue to give this fight everything possible knowing what it is we are setting out to accomplish...The Championship.

God Bless, Go Blue and keep doMinating

Phil

A new look at what it may mean to DOMINATE

A recent blogpost from my close friend and business partner (read here) has my wheels spinning, which is nothing new, but it has me rethinking my approach to DOMINATION. While in heavy treatment, filled with uncertainty in terms of what the outcome would be, I advocated that people live passionately....that you choose to #dominateLife.

I still live with that same conviction that we are called to #dominateLife, but thanks to the wisdom I got from this blogpost, I see extreme value in doing the same thing every day if you want to dominate.

That sounds extremely boring to a guy like me with a personality to create new everyday. BUT, as I look back on 3.5 years of chemo, I can't say it was the big bang bone marrow transplants that alone dominated Myeloma. It was the consistent approach to popping pills, going to my infusion appointments and keeping a positive attitude each day filled the support and love of many.

Hmmmmm....what would my life look like if I did one small act, every day, for the next ten years. What would you do? What if I ran 1 mile every day, versus trying to muster up the emotional energy to run 3 miles 3 times per week?  What if you started to be a little more grateful each day, open doors for the people behind you or just focus on not doing something each day?

I didn't become a great kicker over night. I doubt there were many high school kickers that kicked many more balls than I did. I probably kicked more days than any other kicker. Hmmmmmm. The formula may be less about have extreme passion and greater will than others and more about slowing down, being consistent and persistent....and enjoying the ride.

Keep dominating....

one

day

at

a

time,

Phil

Life = Fun

Almost four years ago our life was put on halt to begin an aggressive several year treatment regiment, including two bone marrow transplants in the summer of 2010. Three summers after the transplants, we FINALLY feel like Myeloma is starting to show up in the rearview mirror, versus this obstacle we are constantly trying to navigate through.

This summer there have been sparks of normalcy in the Brabbs' household. We were able to take a family vacation on the west side of Michigan with some close friends and their kids. We had a Brabbs' family reunion up north over the 4th. We laugh more, we play more, and we are starting to learn how to relax more...although the three kids (7,5,3) make that one most challenging!

In the fun department, I was asked to be part of a UM Football roundtable discussion every week to preview the upcoming Michigan football game with two other old timer football alums. We had our first segment this week, and I had a blast. Not sure people care what "the kicker" thinks on the topic of Michigan football, but I am enjoying the comradery with Doug Skene (89-92) and Ron Simpkins (76-79). Here's the first segment:



For all those excited about the upcoming football season...GO BLUE!

Myeloma Mondays #52: Suzie from Washington DC

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!

Where were you born and raised? 

• Detroit, MI  

Where do you currently live? 

• Washington, DC

When were you diagnosed?

• September 2011

Did you know what MM was prior to diagnosis? 

• No

Is there anyone else your in family with MM?

• Yes, my father

What led to your diagnosis? 

• Annual physical showed elevated total protein in blood.

How many times were you referred before actually diagnosed?

• Once from my internal medicine physician who dx'd MGUS to oncologist who did bone marrow and dx'd MM

Where have you received treatment? 

• NIH

Explain Treatments:

• Carfilzomib along with lenalidomide and dex for 8 months
• lenalidomide 10mg continuous treatment since April 2012
• bisphosphonates

Why did you or your doctor choose a specific treatment?

• I entered a clinical trial for newly diagnosed multiple myeloma patients with carfilzomib because I knew it did not have peripheral neuropathy like what was seen with bortezomib.

What has been the side effects of the different treatments?

• The biggest one was fatigue along with phlebitis while receiving carfilzomib. During continuous treatment I have had joint aches and diarrhea.

What has been the hardest thing about your MM journey?

• Moving forward with the certainty of death by accepting that it was always certain but unfocused on. Recognizing that I could have died any day in a car crash or stepping off a curb, but I did not focus on dying even though it was certain. Knowing, I will likely not know my sons wives nor their children.

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

• Be an active participant with your team of doctors.  I read blogs and research so that I can be an informed patient. Unfortunately, receiving the best care means you need to know your choices. You still will receive good care. It just may not be the best for you as an individual patient, unless you are informed and know your preferences especially in terms of quality of life.

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

•  Faith in God. Reading lots of Joel Osteen.

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

• Accepting that Life is transient and knowing that we are not human beings having a spiritual experience on earth but rather spiritual beings having a human experience on earth 

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

• Yes. I suspect it is soil or fish related (environmental). Toxins in soil from a farm or in fish from the Great Lakes.

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

• IMF,Clinical Care Options, MMRF, Blood Journal,  Medscape, MyelomaBeacon, Webinars from ASH & ASCO, Pat Killingsworth's book Liviing With Multiple Myeloma 

Learn more about Suzie's Story here: 

• www.myelomacinderella.net
• www.about.me/MyelomaCinderella

Give me a High 5!

We made it! I am overcome with emotion as I remember back to August 8, 2008 (8/8/08). We were in survival mode as new parents of two little ones who were 2 and 9 months, with still a very young marriage of less than four years. On top of that, we had just moved back to Ann Arbor the year prior, I started a new job and I just completed building our dream home near the Big House to stake claim to a place that would become home to thousands of memories that we planned to create. Here is a picture of the kids before diagnosis.















A simple google search after diagnosis showed that the five year survival rate for Myeloma patients was a pathetic 37%. I was a day past my 28th birthday, facing what seemed to be an inevitable death sentence. I was young, healthy, I had a budding and beautiful family, but suddenly I was thrown into a new reality, one where a young death felt almost certain. It felt even probable that Ocean would never be able to create any memories of his dad that would be lasting.

Thanks to an army of people, we chose to keep our chin up and shoot for the best possible outcome, a cure. We were told the disease was incurable, but we chose not to believe it. Although my body was stricken with a horrible disease, we would not allow our attitudes to be shaken. But it wasn't easy...There was 12 days of projectile vomiting, a 2 hour ambulance ride, 2 bone marrow transplants and ER visits and hospitalizations every step of the way.

But now, 5 years later, Cassie and I try our best as tired parents of (now) three energetic kids as shown above, to celebrate life, not just live it. We aren't experts at it, and most of the time we just want to nap or sleep in a little longer, but we do see the world very differently because of our experience with Myeloma. We know how quickly life can be stolen from you. Because of this we try to vacation a little longer, laugh a little more and spend more time with each other.

Many thanks to the army of people who have followed us and joined us in kicking cancer. We aren't out of the woods yet, but we are able to see the setting sun on this disease and we are having a great time dominating life. Here is a picture of Cassie and me celebrating my 33rd birthday yesterday in South Haven!

Keep doMMinating,

Phil

P.S. Here is an archived video when I started chemo 4 years ago! Wow, we look young.

Diet and Dominating Cancer

Okay, it's been well over a year since we have seen that pesky MM show up on a blood test or bone marrow biopsy.  We are still many years from proclaiming a cure, but we aren't going to stop trying to kick it. Every day is an opportunity to remind the disease who is boss.

When I was diagnosed, I wanted to look at holistic options for treating my disease. Well, consumed with two little tots, a career, and pressed for time to do research, I opted for the modern approach to taking on cancer with a heck of a lot of stuff that's not good for human consumption, in hopes the bad cells all get elbow dropped to oblivion, and the harm to the good cells is very limited with no lasting affects (i.e. second cancer).

Now, I have some time to breathe, enjoy my family, grow my business (Torrent Consulting)...AND...return to this idea of taking a holistic approach to dominating cancer. Please leave a comment on what you have tried!!!

I have had several dietary related convictions over the years, one is that I want to be a raw vegan foodist. 8 years ago I gave up meat, and I proved to myself I can make some pretty big lasting changes in my diet. Now as a cancer patient, I am thinking of what other dietary changes I should make to give me the best chances of making that game winning kick. One is adding meat back into my diet.

First, I saw a holist doctor last week in West Bloomfield. The guy doesn't take any new patients, but he does LOVE Michigan football....so we lucked in with getting an appointment. He took what seemed to be half my blood from my body and half a pound of hair from my head for analysis purposes. We meet in a couple of weeks to see what he thinks.

In the meantime, I am toying with the idea of cutting out carbs from my diet....and I have already started to experiment. I am perplexed with how a vegetarian can do this...given we are more like carb-etarians in the Brabbs' household. Sugars have been linked as the fuel source for cancer. Not sure how true that is, but I am buying the logic, or at least going to factor it into the approach for my new diet aimed to dominate cancer.

If you or someone you know has said 'No to Carbs'....tell me how they did this without feeling sluggish all day long (me yesterday). By the way, I don't drink coffee or soda....although my tea has been nice!

The other thing I started taking is essential oils...kudos to Cassie on this one. Specifically frankincense. I figured if it was a good enough gift for the King of Kings, Jesus; maybe it could me a magical potion for dominating my Myeloma. Who knows....but I am giving it a shot. I am dominating five drips of this every night in a veggie capsule.

I would love to learn how other people are taking on cancer with their diet. Are you juicing? Are you drinking wheat grass? Are you making mud pies?????

Keep dominating everyone!

Phil

Myeloma Mondays #51 - Kathy from Denver, CO

Share your story and encourage thousands! If you would like your story or 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!

Where were you born and raised? 

• Born in Pocatello, ID.  Moved many, many times growing up -- Utah, Arizona, California and Colorado   

Where do you currently live? 

• Denver, Colorado

When were you diagnosed?

• January 2010 (age 60)

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? 

• I had a rash (hives) on my legs whenever I would work out.  After seeing different doctors for 2-1/2 years, an allergist decided I needed more tests.  Not sure if she suspected multiple myeloma, but eventually it lead to a bone marrow biopsy and confirmed smoldering myeloma in November 2009.  My oncologist at the time said that it would be 18-24 months before I would exhibit signs and need treatment.  However, in 3 short months and more blood work, it had become very active, involving my kidneys and heart.  I started chemo right away (Velcade). 

How many times were you referred before actually diagnosed?

• Several

Where have you received treatment? 

• Originally with Kaiser Permanente in Denver.  Then I had to change insurance companies and went to Colorado Blood Cancer Institute (CBCI). That is where I am currently.

Explain Treatments:

• Velcade for 4 months
• stem cell transplant in August 2010
• Revlimid for 1-1/2 years until side effects became too much 

Why did you or your doctor choose a specific treatment?

• This was the protocol at both Kaiser Oncology and CBCI.  In one day, I was able to collect enough for two transplants, and because I was a very healthy and active individual, the doctors thought I would be a good patient for a transplant.

What has been the side effects of the different treatments?

• Peripheral neuropathy in feet.  Intestinal issues with Revlimid, as well as a rash.  Fatigue, which still continues.

What has been the hardest thing about your MM journey?

• It was very difficult accepting the diagnosis of an incurable blood cancer.  And telling my family about it was also very difficult.  Losing my job because I couldn't go back to work full-time was also very hard.  However, I was able to work part-time, and that eased the transition into retirement.

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

• Be an active participant with your team of doctors.  I read blogs and receive information from the IMF, so I am staying up to date on the current research.

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

• A strong support system and faith in God.

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

• It sounds trite, but each day is a blessing and I really appreciate the good days. 

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?

• MM Beacon, IMF, several blogs - Pat Killingsworth, Pat's Cracked Cup, and U-tube.  Also there's an app for my I-pad called "Managing Myeloma" that keeps me up to date on what is happening in the myeloma community

******************

Share your story and encourage thousands! If you would like your story or 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!

Myeloma Mondays #50: Deb from Hertfordshire, UK

Where were you born and raised?

• I was born in Sheffield but lived in Hertfordshire UK most of my life

Where do you currently live?

• Hertfordshire, United Kingdom

When were you diagnosed and how old were you? 

• 07/01/2009

Did you know what MM was prior to diagnosis?

• Yes

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Routine blood test

How many times were you referred before actually being diagnosed?

• once

Where have you received treatment?

• University College London Hospital  - MacMillan Cancer Centre

Explain your treatment history:

• 2009: MGUS diagnosed Paraproteins 4g/l by Haematologist at Local Hospital Lister Hospital, Stevenage UK
• 2010: Paraproteins 8g/l Skeletal survey clear no symptoms
• Oct 2011: Paraproteins 16g/l Bone Biopsy showed 8% cancerous cells
• July 2012 paraprotein at 28 g/L referral made too University College London Hospital UCLH
• Aug 2012  paraprotein at 35 g/L Smouldering Myeloma diagnosed
• Jan 2013  paraprotein at 50 g/L Multiple Myeloma Diagnosed
• Jan 3rd 2013 Bone Biopsy 80-90% cancerous cells found. Signed up to the PADIMAC trial.
• Jan 21st 2013 started chemo cycle 1 (21days)
• Feb11th 2013 Cycle 2
• March 4th 2013 Cycle 3
• March 11th Velcade injection put on hold due to Neuropathic pain in legs, arms and fingers.

Why did you or your doctor choose a specific treatment?

• As I had no symptoms I was eligible for the PADIMAC trial

What has been the side effects of the different treatments?

• Neuropathic pain in legs, arms and fingers.

What has been the hardest thing about your MM journey?

• Accepting a different way of life

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

• It's not as bad as you might first think. 
• People around you want to help.
• There is a lot of support and advice out there.
• Writing a blog has really helped me.
• It's important to live in the moment.
• Your life will change but some things will be for the better.

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

• Writing my blog www.mymyelomajourney.wordpress.uk

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

• How unimportant work is and how very important family and friends are. I found skills that I didn't know I had and I was stronger than I thought.

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?

• http://ejbones.wordpress.com
• http://www.myeloma.org.uk
• http://dialmformyeloma.blogspot.co.uk
• http://margaret.healthblogs.org
• http://jetblackliving.wordpress.com

Myeloma Mondays #49: Gilbert from Denville, NJ

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!

Where were you born and raised? 

• NYC, grew up in Glen Cove, NY

Where do you currently live? 

• Denville, NJ

When were you diagnosed?

• January 2010 (Age 61)

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? 

• Extreme pain in hamstrings

How many times were you referred before actually diagnosed?

• Once

Where have you received treatment? 

• St.Claires in Denville, Hackensack Medical Center

Explain Treatments:

•  2 weeks radiation reduce tumors on vertebrae 5 months of Revlimid and Dex, 2 stem cell transplants

Why did you or your doctor choose a specific treatment?

• Strong health 61 years old very physically active

What has been the side effects of the different treatments?

• Peripheral neuropathy in legs 

What has been the hardest thing about your MM journey?

• second transplant very rough also the stress on my wife of 42 years without her guidance I would not have made it to this point

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

• Trust in doctors and be willing to listen to advise from caregiver

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

• Very much so keep moving and push for physical activity adjust to different lifestyle of not working

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

• no fear of dying

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

• Yes

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

• MM Beacon 

2013 Update

While sitting in the Cancer Center at U of M, for what may have been my 100th appointment over the last 5 years, I could not help but feel a sense of gratitude. I felt thankful for the parking lot attendee, who always smiles at me like she was expecting me, to the medical staff that has had to put up with me all these years. I feel like we have all grown together and have continued to carry the same message of hope, that keeps us all keeping on each day.

As for my appointment, my bloods counts came back legit. Hemoglobin is the highest it has been in years. I attribute that to playing indoor soccer in the over 30 league every Monday night. That's right, I am back to playing not-so-competitive sports. My leg strength is not quite like it used to be, but I can still miss wide left like it is nobody's business. I am having fun with it and so are my teammates. In a recent game, a teammate of mine dropped the cancer card after I was tripped by an opponent. He said, "Dude, do you know he's a cancer patient?!?!?" 

Lastly, I took a leap of faith and decided to join a very close friend in helping him grow the business office for Torrent Consulting up in Michigan (website) (Like on Facebook) The company is growing quickly and the services seem to be in high demand. The job provides the flexibility to work from home, so that means more time with the family. I also plan to get more plugged in with the University and the Ann Arbor community, which rocks.

In short, 2013 has been good to us so far. -Phil

Myeloma Mondays #48: Brad-strong from Westfield, NJ

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!

Where were you born and raised?

• Chicago, IL

Where do you currently live?

• Westfield, NJ

When were you diagnosed and how old were you?

• 12/1/12 age 45

Did you know what MM was prior to diagnosis?

• Not a clue

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Extreme back/hip pain

How many times were you referred before actually being diagnosed?

• Had my annual physical late September 2012. Blood work normal other than slightly low RBC. Doctor said not to worry. When I told him about back/hip pain he said it was a strained oblique and off I went to physical therapy. 

• 2 months later I couldn't even sit in the car. Back to the doc next day. More blood work showed elevated protein levels and X-rays discovered bone lesions. Right iliac bone was disintegrated. That was thanksgiving week. Week after had bone marrow biopsy that confirmed MM diagnosis. 

Where have you received treatment?

• Started treatment at Mt. Sinai immediately

Explain your treatment history:

• 1 cycle complete VCD (Velcade, Cytoxin, Dex)
• 2 cycles complete CRD (Carfilzomib, Revlimid, Dex)
• Start 3rd CRD Friday 2/15/13

Why did you or your doctor choose a specific treatment?

• I subscribe to the "Mel Stottlemyre theory" of MM. I will be the best patient I can be and my doctor will be the best doctor he can be. If we both play our roles, we will beat this thing. I work with Dr. Jaggannath at Mt. Sinai. I am confident that I am in the best possible hands. So far - over 50% response/remission. M Spike down to 1.02 from 2.76.  So...it's working. 

What has been the side effects of the different treatments?

• Very fortunate that there have been very few rough days. I did have the flu once which kicked my rear. Zometa (once a month IV) is rough as well. Two days after I get the chills and the shakes pretty fierce. Other than that - business as usual. 

What has been the hardest thing about your MM journey?

• It's always there. There isn't a day that goes by that I don't have cancer. I feel great. The further I get, the more active I am. I am at the gym. Elliptical - light weights. But no matter what, no matter how great I feel, no matter how much love and support I get (and I get a ton of it) I still have cancer and that will never change since there is no cure for MM. 

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

1. Trust your doctor. If you don't - get one you trust. Find the absolute best and follow his/her directions. 
2. Find friends. I have found friends from blogs, twitter etc that I can email and give and get support from. Nobody knows what you are going thru as well as someone else going thru it. 
3. You are different. Averages mean nothing. Believe you are an outlier. Everyone with MM has a different experience and it presents itself differently in everyone I meet. One experience does not necessarily translate to another. There is no cookie cutter MM
4. Don't stop living.  

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

• Belief. I believe I am an outlier. Family, friends, writing my blog.  Don't ever lose you sense of humor.  
• Also - don't stop. I haven't missed a day of work. I coach basketball and soccer for my kids. I go to the gym.  Life keeps happening. Stay busy. If you stop living before life stops you are already dead. Show cancer that you won't back down!  One more thing - love others harder than you have ever loved them before. Time is precious. Make the most of every moment. Wife, kids - spend every moment together and hug them every chance you get.
• OK one more:  Mt Sinai. The nurses, the doctors, even the people that check you in are the nicest, most compassionate people. It makes a world of difference when you surround yourself with positive, nice people. These people aren't there to do a job or go to work. They really care. 

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

• Milestones. I used to measure them in "firsts" now I measure them in "lasts" as in this wont be the last...maybe "nexts" is a better word?
• There is a reason cancer picked me. It's because I am strong, relatively young and healthy. It is my job to fight cancer for all of those that aren't strong enough to fight for themselves. I feel a responsibility to help others remain positive and to occupy cancer enough to allow others to live another day. Cancer can't fight us all at once, right?  Let me occupy some time and give others a rest. 

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?

• MMRF
• Beacon
• Matt vs Myeloma
• (My own) bradstrong.wordpress.com
• TWITTER - the best resource I have found (bradstrong-@bradcoustan)

Cancer Results are back!

Every three months I get the chance to hop on the train to Chicago, for a 5 hour trip that gets me in around midnight. I have gracious friends through the city that take me in, so I hop a cab to their place where I crash. When Tuesday morning arrives I catch up with my friends and then they give me a lift or I take the train to the University of Chicago where I see Dr. Jakowbiak.

This trip was similar, but special in its own right. This time I took a traveling companion, my second born and first daughter, Iris. I wasn't sure how traveling with a five year old would go, but inside I felt so thankful for the opportunity to share this moment with her. Her and 'ducky' were the best two traveling companions I could have asked for. We also had a blast reconnecting with a dear friend of mine. 

This trip Dr. J ordered a bone marrow biospy. Although the test only grabs marrow from one area of your body, it hones in very closely on your blood. So needless to say, there was some excitement around what the results would say. This is one area in my life where I want to be negative! 

So the results are now in...and yes...I am still negative! Dr. J even went as far as saying if I can maintain this result for another year, that he would consider taking me off of maintenance chemo. 3.5 years in, with only 1 more to go. It's the last leg to go. 

So 2013 is off to a great start! This time next year I hope to be hitting the training with Iris again, this time returning with no chemo in hand!!! 

Keep dominating everyone!! -Phil