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!)


Anonymous said...

I'm glad to hear the disease exists at a minimal level.

I think the prognosis for you to enjoy your beautiful family is excellent!

Living with MM is a process that you have managed quite well. The transition from active disease to co-existence, pending a cure, is a natural step in that process.

Kindred Spirit said...

What happy news--and beautiful photos! Almighty God has showered you with blessings. May He continue to do so and may you all continue to grow in His Love. You are always in my prayers. Domination!

Sandy said...

A viva! Spanish for "To Life!" It was also the name of my sailboat, on which I lived for 8 years. God is guiding you and Cassie toward the mission and I am intending the MM stays in maintenance for a long time, for the highest and best good of all concerned, so be it and so it is!!!
I know that your domination attitude is another expression of "A viva!"

Myeloma Missive said...

Excellent news, my Brother!

Your incontestable will and strong faith are critical to the victories that will carry you through the next several decades...


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