#365Thanks

Into the new year we go. We don't know what twists and turns to expect in 2012, but I do know that we have a family, friends and a growing community that is battle tested and can take on the unexpected.

One thing that Cassie and I have learned over the years it that the twists and turns will always come. It's part of the adventure. So as I get twisted all about this year there is one thing I want to keep my eyes on...and that is being thankful.

I often speak out on "dominating" or "dominating life".  Those are pretty loaded words at this point in my life, but this year as I continue dominating, I want to partner dominating with gratitude. Or explained in Phil terms, I want to dominate gratitude while I am dominating life.

Better yet, I want to follow someone else in this journey. Often times I find myself taking the lead, raising the flag, shouting from the roof tops. This year though, I want to learn to follow the lead of others. To encourage them, to support them, to shout from the roof tops in their effort to dominate and guide others to a better, more abundant life.

One leader I would like to follow is Alysa. Alysa and her family are straight amazing. Cassie and I met them while in Charlotte, NC and after only seeing each other twice in the total existence of our relationship, we knew we had connected with a couple that we would know for a long time.

Alysa has initiated the #365Thanks project (check it out). She is calling me to give thanks every day. What a simple idea, but man, this seems daunting.  I have so much to be thankful since my cancer diagnosis, maybe this project will allow me an opportunity to recall it over all of 2012.

Myeloma Mondays #42: Tanner (Age 17!!) from Ft. Worth, TX

Where were you born and raised?

•  Fort Worth, Texas

Where do you currently live?

•  In the same home all my life in Kennedale, Texas

When were you diagnosed and how old were you?

•  Official diagnosis was July 23, 2009 - age 17

Did you know what MM was prior to diagnosis?

•  No, I had never heard of Multiple Myeloma.

Is there anyone else your in family with MM?

•  No one in my family - or anyone else I've ever known has ever been diagnosed with MM

What led to your diagnosis?

•  A broken left tibia led to the diagnosis

How many times were you referred before actually being diagnosed?

•  Referred to three different doctors before receiving the actual diagnosis.

Where have you received treatment?

• MIRT @ UAMS
  Cook Childrens Hematology and Oncology Dept

Explain your treatment history: 

• August 7, 2009 - Chemo
• 9/2/2009 - Autologous Stem Cell Transplant
• 10/22/2009 - Autologous Stem Cell Transplant (Tandem)
• 01/02/2010 - Maintenance Treatment (weekly maintenance chemo - still ongoing at present)
• 6-2-2011 - Rod placed in Right Femur
• 7-15-2011 - Rod placed in Left Tibia

Why did you or your doctor choose a specific treatment?

• Dr. Barlogie prescribed the most aggressive chemotherapy treatment and two autologous stem cell transplants because he felt that he needed to give me the most intense treatment possible since I am so young.  He said that because I was young he knew I could handle the aggressive treatment and that he needed to hit the cancer as hard as he could in the hope of affording me a long life.

What has been the side effects of the different treatments?

•  The aggressive chemotherapy treatments have been the hardest thing I've had to endure. I was just so completley sick and week.  I'm so grateful for the fact that because of treatment, I've been in remission for two years, but I hope I never have to go through that process ever again.

What has been the hardest thing about your MM journey?

•  The hardest thing about this MM journey is living in fear of it coming back.  Fear of dying young. 

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

• The top lessons I've learned is that everyone who's diagnosed with MM is afraid, but we all have to learn to put the fear in the background and focus on our lives right now, this moment.  We have to go on every day and believe that we are going to win this battle against the cancer that has tried to take over our bodies.

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

• I met so many great people at UAMS in Little Rock, AR and they were great to me and my mom.  I was the youngest person being treated there and I was like everyone's grandson and they helped me to become strong. When I came back home to Fort Worth, my maintenance treamtent has been done at Cook's Children's Oncology and Hematology Department and while it breaks my heart to see all the young children with cancer, the staff at Cook's has been great! They sent me to a summer camp in Montana where I got to hang out with lots of teenagers with cancer. It's the first time I've gotten to spend time with anyone my age with cancer. I know I'm not alone.

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

• After being diagnosed, I've learned not to take anything for granted.  None of us know what tomorrow's going to bring.  We have to relish every minute.  We've got to make sure the people who mean the most to us know how much we love them.  Don't stress over the little things.

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
• Being Cancer Network
• Multiple Myeloma for Dummies

Normal it is not, but we survive

Today my little Princess Prez turned four. When I was diagnosed, she wasn't yet two years old. Unfortunately, I was not able to be with her today to celebrate her birthday.  Trading birthdays for hospital visits is common place in the world of dominating Multiple Myeloma.

Although I rarely realize it at this point in the journey, life for us has been set to constant survival mode, probably something most cancer patients experience. So missing a birthday; albeit a big disappointment, you learn to scoot around the issue by selecting a different day; although not exactly the same.

Today I am getting a check up which has included a bone marrow biopsy (#8 for the books) and two MRIs (too many to remember). The constant scanning of the body for cancer seems as normal as brushing your teeth every night before bedtime. It's just what you do.

I forget sometimes that this life is far from normal. Dominating MM is what we have known to do over the last two years. We would love for the game to be over and move on to dominating simple old regular life, but we aren't there yet.  We have adjusted to a life where we can plan things 4 days in advance, but it is still much a struggle to plan much beyond that.

We are looking forward to our first normal holiday... and all I want for Christmas is to be there this year; not in the hospital.


We have so much to be thankful for and we know that it is the prayers of many that continue to sustain us in this wild adventure. It helps us forget how wild this adventure really is. Many thanks for that.

In the beginning...

...there was a life threatening pulmonary embolism that almost went misdiagnosed at age 26. Thanks to one smart doctor at St. Joe's in Ann Arbor, they did a CT Scan on what they assumed was an infection in the bottom of my right lung.

From there I went from the best shape in my life with a beautiful bride of two years and a son of 6 months to a life filled with unexplainable health issues more typical of an 87 year old grandfather.

After my second DVT (blood clots in my legs), we were advised by a new friend at church to see a doctor at U of M in Hematology. Brilliant I thought. Although I did not act. Eventually I ran into this person again in front of my house and felt pressured to pursue the referral to U of M.

I was passed from the hematologist to an oncologist named Dr. Jakowbiak, who had been focusing more on Multiple Myeloma, but it wasn't his only focus. As a true scientest in search of disproving some hypotheses, he stumbled across a bone biopsy that showed over 11% plasma cells which led to my diagnosis of Multiple Myeloma. Shock for everyone, even Dr. Jakowbiak. I was 27 during the testing, and received the official diagnosis on 8/8/08, just one day after turning 28.

Dr. J, the great empathetic and compassion man he is, decided not to start treating me immediately until we had more data to understand what the disease was doing. After 12 months of data, it was clear that the disease was on the rise. Cassie and I became increasingly uncomfortable and thought it may be worth getting a second opinion on what to do, plus, at that time several trusted people were pointing us to UAMS (aka Arkansas).

On our trip Arkansas we saw bone scans that showed that the disease was starting to affect my bones and the recommendation from Dr. BB was don't leave this town, start Total Therapy immediately. His sense of urgency caught us off guard, but we did value his opinion given the extent of research done in the MM space and the high flying marks most bloggers were giving to treatment options in Arkansas.

To accelerate the story, we decided to stay under Dr. J's supervision and care, but take on a "like" treatment protocol to that offered in Arkansas. It was going to put me out of work and wipe out my immune system a couple times over in hope that the disease would no longer show up with modern technology.

Well today, the disease is at an extremely minimal level and is being managed through maintenance therapy. My physical body has been beat up, although my spirit has only been increasing in what has been a roller coaster adventure.

Where do we go from here? It's not yet fully clear, but I am sensing another call to action in the new year. 2011 was a year of finding stability. Cassie and I were charged with getting off the mat in the boxing ring and standing up on our own strength after a year long battle with the disease using agressive treatment. We were supported by so many people and prayers in 2010, we wanted to prove to ourselves that we could get back to a "normal" life.

As I look back on 2011, I think it will be remembered by our family as a year of transition back to life so we can take on the next 10 years with clear vision and purpose in all our strength in one accord. It is not clear what the next 10 years will entail, but I sense it will be very mission-centric and heavily focused on building a very strong family unit that grows with and pours into the different communities that are near and dear to our hearts.

More to come on that next chapter as we discern it and live it out. (here is the timeline of the journey for those who joined late!)

Job got roughed up

A couple of weeks ago I shared my life story with 100 Concordia Unviersity Football players, mainly freshman. Everytime I share my story I have a hard time not brining the waterworks as I recount my life's journey over the last 10 years which is covered with tradegy and much darkness; the recent being my battle with an incurable (soon to be dominated) blood cancer.

Last week I got the news that a college friend of mine and mentor of mine had a stillbirth. Cassie and I were deeply hurt by the news. It is just another example of how really bad stuff happens all the time, even to very blessed people who are a blessing to others.

I'll admit, I have not read all of Job and maybe scanned it a couple of times, but today I dusted off a bible and started reading. I just got a snapshot of part of Job's fight with darkness and it is wretched. The dude got punked, roughed up and thrown to the wolves. I think a lot of us feel like this and have experiences that leave us thinking, "What the hell God, why this sh**?!?! Is God really Love?"

So where do we go from here?? Job gets roughed up, my friends go through what I think to be one of the worst experiences first time parents could ever go through and I am still left with a cancer in my body that still wants to fight.

All I can think of is seek capital l....Love, and lean not on our own understanding which will inevitably lead to despair.

Love has a path, may we find it in whatever extreme darkness we maybe facing.

Y Not?

Why not sign up at the local YMCA that is just blocks from our house? Well, the last couple of years the idea of going into a closed space like this with two little ones who love to collect germs, was less than ideal given my compromised immune system due to the Multiple Myeloma and the chemical warfare that was recently enacted.

Well, we have reached a new era. My immune system is on the rise and we now have three kids who love to collect germs. The difference being that I now have a physical body that ain't like it used to be. I may "look good", but under that smile is a body that has been physically dominated. Although I have been running, I still have not found the time to return to hitting the weights to strengthen both my bones and (non-existent) muscles. 

Yesterday Cassie went down to the YMCA and pulled the trigger on a YMCA members to (1) get us both into shape and (2) give us a family place to go to help us maintain sanity as we move into the cold and dreary winter months in Michigan. The Y happens to have free childcare, so I suspect Cassie will be there every day! 

Lastly, I sense that we are moving into a new phase in our domination of life and taking on Multiple Myeloma. This may or may not activate us writing more blogs to chronicle our experience, but I hope i does!  Regardless, I have gotten a little more active on Twitter (@brabbs) if any of you are on there!!

See you at that Y. -Phil

Spirits are on the Rise

Without a post in almost 3 months, you may have suspected I have disappeared. Well, sort of, but it is all good. I have moved into the state where I am getting checkups every 3 months to review the status of my M-spike, along with all the other key numbers.

The cancer progress...well...it hasn't progressed. I have been at a standstill of 0.1 M-spike since last December. This is great news. I am still on maintenance drugs to continue to suppress the disease, keeping hope that this will end up being a cure for my Multiple Myeloma.



The summer was wonderful. Our family is starting to come alive and although stress levels are still higher than I would like, we are moving beyond the day to day, week to week, craziness that Myeloma brings people. We are so thankful that our concerns of the day are returning to: What's for dinner? What kid drew on the wall? Where are my keys?

I sense the spirit continue to rise in and around us. The state of Michigan I believe is on the same path; coming out of the ashes to birth new economy; new hope. For my body, I am looking for a rebirth as well with my new immune system trying to find its way in this world.

As an athlete raised up in Michigan Sports....can life really get any better (see: Lions, Tigers, UM, MSU)?!?!? Here's a photo of me dominating the Lions game. I had not been to a game in 15 years.

Gone Fishing...dominating Life

The fight last summer was focused strictly on aggressive treatment to dominate Myeloma, but this summer it has turned to smallmouth bass. After 3 years of thinking about and taking on Myeloma with heavy treatment, and at times, a heavy heart, this summer feels like it is a rebirth of passions that are part of a thick core of who I am.

The cancer forced me to re-evaluate everything, specifically where I spend my time and energy, not banking on that I will have the next 30-40 years to figure out life. Through this process of reflection spent during chemo infusions up at B1 and two week hospital stays on 8A, I have discovered what I am good at, my strengths. That has been helpful, but I have been lacking an ability to simply enjoy life. Much of it has been centered on domination, and not vacation. Below is me at age 7 showing the recent fishing domination.

I had a breakthrough by spending over a week up north (northern Michigan for non-michiganders) with my family at a park that has been the relaxing vacation spot for the Brabbs' family all the way back to my great-grandfather who would take my grandfather up there when he was a boy. Here are some photos of my revisiting one of my passions...camping/fishing up north. I am thankful that my focus can now move towards dominating life by enjoying one of my greatest pleasures.

The big kids and me heading to get ice cream at the store.

Me catching crayfish underneath rocks up at the dam. We use them for bait.

Iris and me relaxing on my parent's pontoon as we go for a boat ride.

pardon my ramblings. i have mush brain. i blame children.

Hi friends!

I've been thinkin' that it's high time we updated our header here at MM For Dummies, so I went ahead and took the liberty of doing just that. Check it.

As Phil and I mentioned in our video blog a couple weeks back, we've been cruising through the summer, trying to figure out what "normal" looks like for us post-treatment. Well, I say post-treatment but Phil is still on maintenance chemo... so I mean the BMT nonsense of yore. 'Memba this?


Transplantin'.

Chemo these days is a pill that Phil takes at home, so we're a long way from the transplant floor. His pills make him tired and he has some neuropathy which are just about the only side effects. (I'm not on any medication and I have more side effects than he has... i.e. mood swings, laziness, attitude problems, voracious appetite, caffeine cravings, griping about the mess, etc. But anyway.)

We've had some awesome opportunities this summer to connect with the cancer community here in Ann Arbor and were also able to attend some fundraising events for UMHS, The Make-A-Wish Foundation, and the LLS. (Warning: probably do not bid on silent auction items after your second glass of wine. Anyone want to go see a comedy show?) These stories, these lives... the challenges that some people- like some of you- must face day in and day out is humbling to hear. Yet through it all, the resiliency of the human spirit is so incredibly beautiful.

When we started this blog in 2008 I would pore over the very few myeloma blogs that were out there, looking for new content, predictions, data, research... anything that would give me the definitive answers that I craved. I didn't find any answers, but instead we found friends. No one ever believes that cancer (or an accident, or any type of illness) can happen to you or someone you love. But it happens every day. And if you're reading this, then tragically you know how true that is.

BUT. You also know that there is hope out there, and much of that hope lies in the relationships that are formed through shared experience. We are grateful for the part each one of you has played in providing hope to us. We're just trying to figure out how to pay it back. Or forward. Or sideways. Somewhere.

Tomorrow is Phil's one year post-first-transplant appointment. It's so hard to believe that it's already/only been a year. Last year a wise friend told us that, once Phil was through treatment, it would just feel like the whole thing had been a bad weekend. And she was right. Except for the having-a-baby-in-the-middle-of-it part. That was pretty rad.

We're still keeping you guys updated through this here blog from time to time, even if there's not much to tell. Because hopefully that will be an encouragement to you. No news is good news, but good news is the best news. Pretty much.

Love!

Video Blog Update

A video update from Brabbs-land.

Dominate for Kyle & His Team

I was recently made aware of a 19 year old named Kyle who is taking on AML up at UM C.S. Mott Children's Hospital. He is a rock star guy from everything I have heard about him. I was invited to visit him today (thanks Ann!) to help provide some dominate cheer as Kyle continues to try to knock the AML down to the point where he can go to transplant, and his only hope for a cure.

Being back at UMHS, but this time on my own accord and not because of a blood draw, chemo infusion or transplant, I was awaken again with the reality that there are people everywhere, everyday that we will never know who are giving their all to kick cancer and continue to dominate life. Kyle is one of them.

Dominate prayer, positive thoughts, whatever you may call it, so Kyle knows Love surrounds him. Also, join Team Kyle by considering to get swabbed and added to the bone marrow registry. You could save a life.

My Life

This describes it all. I feel Wildly Blessed. Cheers to domination.