Monday, November 21, 2011

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.

Friday, November 11, 2011

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!)

Tuesday, November 8, 2011

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.

Saturday, November 5, 2011

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