Monday, February 28, 2011

1..2..3...4...5...Blast Off!

Today is an extra special day for us all. It was just over to 2.5 years ago when our lives were changed forever due to a disease known as Multiple Myeloma. I remember it very well. Rather than my life flashing right before me, I was troubled by the image of Ocean growing up without ever knowing his father and the devastation that could bring to his life. At the time of diagnosis, almost everything we read about Multiple Myeloma was doom and gloom. The life expectancy we consistently read about was 3-5 years. Below is Ocean a few months before we learned of my diagnosis which came on 8.8.08.

Well, we hardly believe those statistics any more thanks to aggressive therapy and new treatment options. Although, I do relish each additional year I am able to spend with Ocean, Iris and now Ruby. Ocean's birthday is pretty emotional for me because it is a reminder that I cannot take for granted my time with him and that it could be snatched up in a moment's notice. Today he turns 5 and although most people say, wow, time sure has flown...for me, I feel like the kid should be 10 by now given all that we have been through and experienced since he was born on Feb. 28th, 2006 in Concord, NC.

So cheers to Ocean today! This kid brings a lot of laughter and bright moments to our world that hasn't been all smiles; albeit he makes us forget. The kid has been smiling since day one and I am certain that nothing will be able to stop him!

Thursday, February 24, 2011

Dominate for Fred Today

I recently learned that a wonderful man that I had the good fortune to connect with during my 2nd bone marrow transplant has lost his battle with mantle cell lymphoma. I celebrated with him and his wife the 4th of July over Mountain Dew, Pizza and some Rockband. Here's the recording from that day. His name is Fred and his wife is rocking the guitar during the video.

Yesterday, I got the opportunity to meet his beautiful daughter who happened to graduate from U of M the same time I did. Their whole family seems so wonderful and my heart is very heavy for all of them as today and tomorrow they will have the showing.

Being on this journey with cancer is far from lonely for me. I now know hundreds of families in the fight. It's days like this when I must take in the sobering reality that things don't always end the way we would like.

The family has decided to pass out dominate bracelets to the people who attend the services. They are far from giving up life, instead, they are going to continue to dominate. I am so impressed.

Monday, February 21, 2011

This is Good News, but we want Great!

I stumbled across an article featuring Dr. Ken Andersen from Dana Farber (Thanks Myeloma Beacon!). He presents where he thinks treatment options are today for MM patients and ends with this:

“The median survival, especially in younger patients, is seven to eight years. Maintenance is adding at least another several years to that. So a newly diagnosed patient today has a likely median survival of over ten years.”

I am very happy to see an expert in the field raising the bar in terms of what a relatively healthy younger patient should expect in terms of median survival given the novel therapy that is in practice today.

The survival rate is trending in the right direction, but we need to continue to push for better outcomes.

Thursday, February 17, 2011

I know, you like Cassie better

Ever since elementary school I loved creative writing. Unfortunately, I had a bad 9th grade English experience that ruined my perspective on my personal writing forever. The teacher seemed to have something against me and I felt very small in that classroom. My passion for writing disappeared to the point where I enrolled in the School of Engineering at U of M, not because I had a passion for math and sciences, but because I did not want to have to write a single paper in college.

But this post is not about me and the need for reconciliation with a teacher I had over 15 years ago, it's about how Cassie dominates writing and my hope to see her return to it. Even though her blogposts on MMforDummies get at least twice the comments as mine I choose not to get competitive about this matter because it's a battle I cannot win. Cancer on the other hand, I can handle.

Cassie is a complete rockstar writer. As most of you have discovered, she is hilarious, witty and can provide some very insightful and pragmatic advice. She just dominates. To tie this all in with our cancer journey, Cassie and I have realized that it is really important that she have a life beyond kids, cancer and picking up everyone else's messes. She was once an avid personal blogger, but well....cancer and MM for Dummies took over our that. It was cancer first, everything else last.

Over the last few weeks I have encouraged Cassie to get back to expressing herself in writing. She is slowly, but surely returning to informing the online world about her constant battle picking up the messes of the ones she loves most, while making people laugh and cry along the way. She is truly a gifted writer. You can tune in here if you are interested:

Tuesday, February 15, 2011

Back to Dominating the Cancer Center

Today I have my check up after my five week vacation from the cancer center. I received a very warm welcome by both my phlebotomist and the receptionist. Both recognized that I have not been around for a while. I am hoping that 5 weeks will turn to three months very soon.

The point of this check up is to take a look at how I am doing now that I am in maintenance mode chemo and where my M-spike and other counts are at. We want an M-spike of 0.0! The last 6 tests have come back 0.2, 0.2, 0.2, 0.2, 0.2, 0.1 respectively. Not bad given I started at 3.0 and the target is a big fat ZERO!

On a side note, a heat wave is hitting Michigan! We hit 40 degrees out. The climate change is starting to motivate me to take my health back by dominating running again. It's been a challenge to find the time and motivation to exercise with kid #3 added to the mix.

By the way, I will be speaking in Frankenmuth (MI) this Saturday for those in the area! Feb 19th, 7:30-9:00AM, Zehnder’s of Frankenmuth – South entrance. Topic: Dominating Cancer through Faith, Cost $6.00 plus tip (breakfast). PLEASE RSVP to as seating is limited.

Monday, February 14, 2011

Do you like Myeloma?

"Do you like Myeloma..Daddy?" was the question that came from my four almost five year old son. I was totally caught off guard. One, because he pronounced Myeloma better than most adults, and two, the fact he even knew the word.

His question still has me in a tailspin. You would think the immediate response would be "NOOOOOOO!"...but that was not what came to mind. I am still caught up in this question days later and my thoughts are a little scattered....I just don't know exactly how I feel about Myeloma. Obviously I wish it would depart from this earth as early as yesterday, but I don't feel an angery/firey get out of my life now -type response.

Like any bumps in my life I tend to see them as redirection onto a better path and an opportunity to know myself better. I can say that Myeloma has definitely provided both redirection and many opportunities for me to better understand myself and those around me. Don't get me wrong, I am not "thankful" for the disease nor do I view it as a gift, but I don't hate it nor do I feel like I am in a "battle" against it. Weird...I know.

To set the record straight...Ocean was referring to Myeloma buddies...NOT the disease. I wish he would have told me that up front before my mind went down this rabbit trail to understand how I feel about my Myeloma. As for Myeloma Buddies....I think they are LEGIT!

Happy Valentine's Day everyone!


Friday, February 11, 2011

The domiNATION continues to spread

Over 7,000 Myeloma-colored Dominate Bracelets and over 1,000 dominate shirts have been distributed in less than a year.....wowzers! What started out as a way to thank some close friends for running with me in the 10k Big House Big Heart Run before I started my treatment to dominate Multiple Myeloma, has turned in a charge to connect, encourage, motivate and spread the attitude of domination; especially those who are taking on some tough life challenges right now, like cancer. And it's not just me doing the charging, it's Zach and his football team at a children's hospital during Christmas spreading some cheer and a message of domination.

We have received hundreds of photos from people "dominating" mountains, marathons and plenty of vacations across the globe....we even got recent Superbowl Champion, Heisman Trophy Winner and Michigan Football Alum, Charles Woodson to pose some Domination for us. We've sent bracelets to almost every continent and probably every state by now. To see people out there dominating motivates me ever more to keep pushing along this journey. It can be a fine line between life and death when you are dealing with cancer, and I am All-in for life. Here is a football player from Czech dominating during his recent workout.

If you have not had an opportunity to grab some dominate gear, it's not too late. Also, thanks to a donor, all proceeds from dominate gear sales at UGP will be matched and go directly towards the Cancer Kicker Fund at UMCCC. Here's the current dominate gear that you can purchase online thanks to Underground Printing! They also have it available in all three of their locations in Ann Arbor (including Moe's). Click on the product to view in at the online store.

Specials thanks to the Brabbs Family, the Branigans, AJ at A2Shirts, Rishi, Seth and the folks at UGP and MOE's, Brian Walline and Scott Robbins (Six Zero). Along with the the people sporting the the dominate gear, these are some of the people who have made all of this into a reality.

Wednesday, February 9, 2011

In Bloggers I Trust

I place my hope and trust in the hands of God and doctors...BUT also the MM Bloggers. I cannot tell you how thankful I am for the folks out there who are either dominating MM or caring for someone who is dominating MM all awhile taking the time to document their journey in a blog for others to read and follow along.

When we started this journey back in 2008 there were very few MM bloggers out there. The few that were, we ate up every word of every blogpost in search of hope that said something better than a newly diagnosed MM patient has a 35% chance of living 5 more years. This stat needs some serious revision. Right Nick? :)

And hope we found! So thanks to all of those people who are in the trenches with MM and willing to share their insight, wisdom and even hard times with everyone else.

Today I wanted to mention a new blogger to the scene who we connected with through our blog. They are a young couple with a young son. The husband is a high risk patient (here's his story) and has a tough road ahead of him. The good news is that he has a tough wife on his side.

I think this growing online MM community is HUGE. I think the collective power in this group will help advance the science and challenge oncologists across the globe to consider the most current therapy that is getting the best results. We all need to continue to push forward and support one another. We need more centers of excellence, more individualized treatment therapies and more research $$$.

We can do this so....Let's dominate....Together.


Sunday, February 6, 2011

Maintenance Mode

Quick update on the stomach bug. Cassie was awarded the gold star of domination as she was the single soldier combating Ocean and Iris's ralphing, while wounded herself by the same bug. Fortunately this battle lasted only 24 hours. I think Cassie is still a little depleted from her heroic effort that successfully kept the ever-so-happy Ruby and me safe from the invading stomach bug that waged war on our household.

Monday marks the end of my first 21 day cycle of maintenance which kicks off 7 days rest. At this point I am down to two side effects: (1) neurothapy (2) fatigue. They both present more as the day progresses, but are manageable, especially in comparison to the side effects that hit me when I started this treatment journey back in October 2009 (re: 12 days of projectile vomit).

I have had enough energy to shovel the affects of Snowmaggedon, and on a more enjoyable note, take Ocean ice skating for his first time this season. He dominated the ice and I am so thankful that we are able to share in these experiences; especially the hot chocolate! Ocean has also decided his favorite wintertime activity is throwing snowballs at Daddy. Good thing he throws like a 4 year old.

Much love to the Myeloma community and everyone following this crazy journey. -Phil

Tuesday, February 1, 2011

The Stomach Bug has arrived

With a weakened immune system thanks to a couple of stem cell transplants and heaps of chemotherapy, getting any bug is like catching the plague. This morning I (Phil) woke up to a puking Iris and a mommy who is not far behind. Ocean, Ruby and I are holding strong on the first floor of the house while the sickies are sticking to the second floor in attempt to quarantine the stomach bug.

It's one thing to have a down trodden immune system :( but it's extremely challenging to stay healthy when you have three young kids high fiving germs every time you leave the house. It's also not very fun wearing a mask in your house, but you do what you have to do to stay healthy.