Thursday, August 29, 2013

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!

Monday, August 19, 2013

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: 

Thursday, August 8, 2013

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,


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