Friday, August 8, 2014

6 years later...doMMination continues!

6 years to the day, one day after turning 28, we were given the terrible news that there was some rare and incurable blood cancer detectable within my bone marrow. We were shocked, devastated and completely uneducated on the disease. So Cassie launched this blog to drive MM awareness and education to our friends and family.

At the time of diagnosis, we were told that 1 in 3 people live 5 years after diagnosis. Awesome.

Well, yesterday I turned 34 and today we celebrate 6 years of doMMination. Yesterday for my birthday dinner at Real Seafood in Ann Arbor, Cassie asked me what I have enjoyed most about the last year. I thought it was a great question because I very rarely reflect on the past.

So to help keep August 8 a positive day, each year I intend on recalling 10 things from the last year that made it great...in no particular order:

  1. Our Marriage - Cassie and I are coming up on 10 years together next month and our communication and understanding of one another is at an all time high. I hope to spend the next 10 years appreciating our differences. 
  2. Our Neighbors - We had a desire to connect more with our neighbors and it naturally happened. We live next to some real cool and interesting people. 
  3. Our Kids - I love children. They are so challenging, but so full of life and adventure. We are so fortunate to have three kids, all of which have very good hearts. 
  4. Florida - We had a blast both in Disney World and staying with my parents at Anna Maria Island. Cassie agreed by far that this was one of the best vacations our family has ever had. 
  5. Business - I had a dream of working for myself one day. In stead, I get to work with my best friend at Torrent Consulting. We have worked so hard the last 12 months and are excited to have grown a team of over 20 people, all of which are unique, talented and very fun to work with!
  6. New/Old Friends - We have made some new friends and rekindled old relations. These friends have taught me how to kick it back in the present moment and just have a good time. 
  7. Yoga - After many failed attempts to become a runner (my body just couldn't take it), a friend suggested I try yoga. I am not quite a yoggie, but I love it!
  8. Our kids' elementary school. It's walking distance from our house, and it's filled with amazing kids that are part of amazing families, with amazing teachers. We are one year away from having all three kids there!
  9. Michigan Basketball - I went on whim and bought season UM Bball tickets last year. I went to almost every home game. I wouldn't quite say I am a fan yet, but I believe in what the coaching staff is doing.
  10. Guitar - No, I don't play the guitar, but Cassie has been learning for the last few months. Seeing her come alive this year in her own way on her own accord has been beautiful to watch. The last six years have been very challenging for her and it's great to see her blossoming again!

So.....although last year was the year my Myeloma resurfaced, it was probably one of the best years of my life.

Cheers to another great year with Myeloma!

Phil

Saturday, June 28, 2014

MMy Update

What does it mean when a Myeloma blogger doesn't post in 4 months? Well....the positive reason is that they have returned to life, and Myeloma is but a mere distant memory.

That's our situation.  Until now. Hence, I am blogging again.

We had our three month check up to see where my M-spike was at after completing four rounds of maintenance chemo, 15mg of Revlimid, 21 day cycles, for those keeping track at home.

Before I get into the results, I want to talk about Life results from the last four months. Because my life isn't Myeloma, although Myeloma has been a strong life motivator since my diagnosis on 8/8/08.

Here are some major highlights:

  • Ocean turned 8!
  • Ruby turned 4!
  • Traveled to Chicago with Iris on the train
  • Had a guy weekend up north in Oscoda
  • We took a vacation to South Haven, MI....very lovely
  • Cassie is learning how to play the guitar so she can take her show on the road to bars and weddings
  • Cassie got 2nd place in her age group in the Dexter A2 5k!
  • My business has grown from my business partner and me...to 20ish people in less than a year
2014 has been very good to us half way through and we don't intend on the momentum slowing down now that we have beautiful weather and Michigan football is just two months away!

On to the MM results from last week. Recall, my blood work showed a trace amount of MM last fall. We watched it, and eventually it passed the threshold from not measurable, to slightly measurable at 0.1. 

From there...I went on maintenance chemo...the 4 cycles I mentioned above, with the goal at containing the disease at 0.1...or best case...eliminating it. 

Well....we are now at 0.2. What this means. We can't claim victory over Myeloma quite yet, but we will take hold of the wins we are having as a family as we build more and more memories. 

Next steps. Check labs again in 4 weeks at UMCCC. My last 5 or 6 data points all showed a slight, but upward trend...so we'll see. 

I don't get sad very often....like ever. But on Friday as I was driving into work I started to feel bummed about the results. Sometimes it feels good to feel bummed and to allow the reality of the situation to connect through all parts of your body.

Then...Feel Good Fridays popped on the radio - 96.3 for those in SE Michigan. There was a minister talking about how we need darkness to be able to see The Light. Man....those words hit so deeply. My sadness faded, my hope returned....and I had an amazing day! Part of that was because I had Ocean come to work with me.

So it looks like we are going to have to determine new/additional treatment options. I will warm up to that over the next four weeks, we'll probably seek several opinions from some Myeloma Rockstar Specialists...and make a decision. 

Find The Light in your day...it's there somewhere. 

-Phil

Wednesday, February 26, 2014

Here we go again...

Hey all! It's Cassie. Long time no blog. My bad. But hey. HEY. Look what arrived in the mail today...


"I love my Fed Ex guy, because he's a drug dealer and doesn't even know it." -Mitch Hedberg

Phil begins Revlimid today, again. Just to refresh you all, Revlimid is one of the chemo drugs that he took after his transplants. It's an oral chemo that has minimal side effects (for chemo, anyway) and he gets to take it at home which means no trips to the infusion center. Yay for simplification!

I think the plan is to keep Phil on Rev indefinitely, and then at some point we will do another stem cell collection. But we'll cross that bridge when we come to it, and keep you all posted. In the mean time, life continues as usual, just with a little more pill-popping than usual. As the Revlimid starts doing its job we will keep our eyes peeled for any side effects so we don't have a repeat of the stomach lava situation of 2009. Oy vey.

Thank you, everyone, for your warm thoughts and prayers. We're disappointed that we have to think about myeloma again after such a brief interlude, but our spirits are good and we are going forward with hope that this will knock that m-spike back down to zero for a good long time. Ka-pow.


First dose, down the hatch.

Monday, February 17, 2014

Cancer Sucks - From a Sister's Perspective

Cancer Sucks. After hearing about my brothers resent update on MM (Multiple Myeloma) I have a constant thought in my head of cancer. Why? Why him? Will they find a cure? When will I have to say good-bye to my brother? I hate these thoughts, I hate thinking of it. After dominating a year of not having a trace of MM my brother received upsetting news that the horrible crap is back. And since then it's been the only thing on my mind.

Whether you are someone who has cancer, who have dominated it or someone who is walking aside a mother, father, brother, sister, aunt, uncle, friend, etc. who has this horrible thing we call cancer.....long story short....CANCER SUCKS.


I have been fortunate to become great friends with one of my co-workers who also found out that his Mother's cancer is back. Once he told me about that I shared my brothers story with him. And he felt bad for me. And all I could think about after he said that is that I feel bad for him. It doesn't matter what cancer is worse or who is battling it harder. Cancer is cancer and like I said before and I will forever...CANCER SUCKS.

And then yesterday I was waiting on a table of 2 couples both in their upper 70s. We got in a conversation of tattoos. As they got up and were about to leave the sweet lady grabbed my hand and said, "I see your tattoo." With a cute smirk on her face. I love telling the story of my tattoo.

For you who don't know ,I have Dominate tattooed on my wrist. My brother had Dominate bracelets made when he was diagnosed with MM. So instead of wearing the bracelet everyday I got it tattooed on my wrist so I have the constant reminder of DOMINATING life.

After I told the sweet lady of my brothers journey her eyes filled with tears and she told me that last week she was given the horrible news that she has kidney failure. She told me that her Dr checked it 3 times cause he even couldn't believe it. She told me that she can't even tell me when the last time she was sick, that the last time she had a cold was over 20 years ago. She was healthy, always ate right and took care of herself.

Sharing our stories was so touching.

May 2001
I told her about my feelings. Why my brother? Straight A kid growing up. A kid who pushed everything he did to the limits and beyond. Played Football at U of M.  Married a beautiful woman, got blessed with 3 ridiculously awesome rocking kids. Works hard to support his family.  Goes to church. And even though he has this crappy cancer he still wakes up everyday thinking ....Who can I help today?

Why, Why him?

And I came to this conclusion............God only gives you what you can handle. And I truly believe that.

When Phil was diagnosed in 2008, all I could think about was why didn't I get it? I wasn't a straight A student and I definitely wasn't the "perfect" teenager. Why give it to him and not me?

But watching and walking with my brother in his journey...I get it now. I couldn't handle it if it was me who had this crappy thing we call cancer. My brother can. He is without a doubt the strongest man I have ever met.

And there is no doubt in my mind that even though as of today there is no cure for MM..
...he will dominate it
...he will watch his kids grow
...watch them all graduate college and get married and have grandkids of his own!

Our family is strong....for god's sake WE ARE BRABBS.. #Dominate

-Laura

(youngest sister out of four)



Wednesday, February 12, 2014

Can you help me Speak up?

I have been encouraged by many people to (1) do more motivational speaking and (2) write a book.

Oh, how ironic this is for the one time kid who decided to study engineering for the sole purpose of not having to read, write or speak in class, let alone give a speech to a captive audience of more than two people, one being my mom. 

The fact I even blog as frequently as I do is nothing short of a miracle. I preferred calculus to pouring my thoughts into words, sentences, and paragraphs onto pages. Give me a soccer ball, football, baseball or even some crayons or a paintbrush; but a book, some reading glasses and some paper and pencils...no thank you.

With the resurgence of Myeloma in me, I feel a conviction to speak boldly once again. I have captured a perspective on life at such a young age that many people in their old(er) age are just discovering. In a lot of ways I feel very fortunate, while at the same time, feeling held captive to this disease inside of me. Speaking helps me process, it is very therapeutic, and brings me purpose to live with this disease and push to dominate it. In the end, I think there is a book here, but I need to live it out some more. I need to share the story some more to discover the pearls.

So I need your help. I want to speak, I want to share, I want to take this show on the road, so to speak, but I don't know how. Yes, I have done motivational speaking at very large venues. I am experienced, but I have never pushed this, it's all just happened. People request that I speak, and I speak.

I now want to be more proactive. I want to speak to large organizations and small; all who are interested. I want to speak to congregations and high schoolers, to blue chip companies and the latest non-profit. All of which I have done, but I want to do it more. More than ever, I feel a sense of urgency and an obligation.

How can you help? Well... I need some direction on how to move this forward. I don't have an agent, I don't have a website, I sure don't have a book... all I have is my story. The story has been picked up by ESPN, NBC, Sports Illustrated and many news sources... all none of my doing. 

I do have a one pager that highlights my story, my experience speaking and gives some cliff notes on the message I bring. (check it out by clicking here

How do you advise, recommend, suggest I move forward in taking this show on the road? Well, not too much time on the road because I have a blossoming business (Go Torrent!) and a lovely family I need to focus on! (email any thoughts to phil @ cancerkicker dot org)



Thanks!! -Phil

Dear Tom

Letter to Tom Brokaw:

Tom-

First and foremost, I am sorry that you have to carry this burden. My heart is with you and your loved ones, as are my thoughts and prayers.

One year after being diagnosed at the rare age of 28, I decide I need to (1) aggressively treat this disease and (2) open up to all that will listen to share my journey with Myeloma to help build awareness for a disease that doesn't get much airtime, although it affects many each year.

I encourage you in being bold in your fight, but also helping all those who have gone before and will be diagnosed after. You have an opportunity to shed light on a disease that is dark, but is losing its power every passing year thanks to the advancements in treatments.

I went for the game winning kick almost 5 years ago (or maybe it was more like a two point conversion); which is the only way I know how to live due to my indoctrination as placekicker at the University of Michigan. We just recently realized that it didn't produce a cure, and rather than winning in regulation, we are now going into overtime.

Simply put, I am both mad and sad. My kids are roughly 8, 6, and 4. I had hoped that Myeloma would be no more than a name given to my children's Myeloma buddies that they snuggled with as very little ones. Now, it looks like they are going to be pulled into this journey as I begin treatment again. I feel like they are losing their innocence to this disease. I want them to fear not, Daddy is here, he will be okay.

Your diagnosis in a strange way brings more hope than ever to me; to thousands of others I bet too. One man once told me I was given this rare gift (of Myeloma) as an opportunity to bring hope to others. I wasn't exactly sure what he meant at the time. I share the same word with you. You are strong enough to carry this burden, and through your journey, your story, you have an opportunity serve and help many. It's a paradox, but I think there is some wisdom there.

Lastly, you have joined a faMMily of brothers, sisters, mothers, fathers, aunts, uncles and cousins; that you never knew existed. This coMMunity is loving, caring and they will be there for you every step of the way. Lean on theMM.

You will doMMinate, we are with you.

-Phil & FaMMily

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Thursday, February 6, 2014

What's your Mountain?

When I think about my journey with an incurable cancer, I can't help to think that everyone is dealing with some sort of cancer. Whether a broken relationship, an absent parent or a rare disease like cancer, we all have something that is nagging us, no one is left unharmed in this world.


Knowing this gives me personal comfort in that I am not alone, and even greater, I feel a sense of community, a sense of shared purpose to overcome the darkness.

One year ago I took what I hoped to be my last dose of chemotherapy. I had been cancer free for a year and completed 3.5 years of treatment. I was sick of being sick and ready to dominate life without this disease; with out a daily dose of chemo.

Well, almost one year after stopping treatment, I sat in the doctor's office on Wednesday to learn that my Myeloma is officially back and measurable. The last few blood tests showed a trace amount, but it wasn't even significant enough to measure.

As the news starts to circulate, I start to get the, "I am soooooooo sorry to hear this." This morning I received a text from one of my best friends that said, "Dude, I just heard about your M spike that you obviously didn't tell me about while I was whining about my much less important garbage. You guys holding up okay?"

My response back to my good friend, "I didn't want to detract from the conversation. Myeloma has consumed us for many years, no need to have it dominate our conversation last night."

You see, I want people to not look at my mountain as harder or more significant that the mountain in their own life. More important, I want to be able to support others, especially those close to me in their efforts to overcome their own difficult and uncertain journey.

So how am I doing? I am hanging in there, but how are you doing? How's your marriage? How's your relationship with your daughter? How are you living out your strengths? What's holding you back in life, in your career? What changes do you need to make?

Myeloma, yes, it has returned...but we have climbed this mountain before and we will scale it again. But what about your mountain?

-Phil

(Thanks mom for the Dr. Seuss quote, it inspired this post)


Thursday, December 5, 2013

Would you go for two?

Many people tuned in to the epic game between my love, Michigan Football and their bitter rival, The Ohio State last Saturday. It was a battle, both teams pushing hard towards victory. For Ohio State, their National Title hopes were on the line. For Michigan, restored dignity and a final home game for the Seniors who undoubtedly wanted to end their regular season and last home game on a high note, beating the Buckeyes.



So how did it end? Well, Michigan displayed it's usual last minute heroics and drove the field to score the game tying touchdown with seconds left, assuming an automatic extra point from the kicker.

But wait....they didn't bring out the kicker. In stead, the offense is on the field and they are showing signs that they are going for two! Wow, they make it, it's a historic win, if they miss, well...they lose to rival Ohio State in dramatic fashion. I was at the game....the air got very thick in anticipation.

Ohio State not ready to handle a two point conversion, calls a timeout.

What does Coach Hoke do? Does he second guess his decision and put in his kicker knowing that Ohio State just burned their last timeout, knowing with in reason that this game has a very strong chance of going to overtime?

No. He turns to the Seniors and asks (paraphrased): "Men, what do you want to do?" Unanimously, they wanted to go for the WIN!

Of course, they go on to miss the conversion and Ohio State sneaks out of the Big House with a one point victory.

This week I have let the decision to go for two really sink in, along with the final outcome, and I have learned a lot about myself.

Mostly, I have learned that I am a "Go for Two" kind of guy. I pursue life wanting to take every moment to win right then and there, not hold out for a what-may-be victory. I want to seize it. I want to experience it...Now.

This can explain why I put my body through 3.5 years of treatment, including 7 cycles of a very nasty chemotherapy regiment, followed by back to back bone marrow transplants, 7 more cycles of chemo, followed up by maintenance chemotherapy.

This also explains why I am uneasy about seeing a trace amount of Myeloma in my blood. The current medical staff at UMCCC is not happy about the results, but there also isn't a sense of urgency, a sense that we need to go for two if you will.

I cannot escape my Go For Two personality. I want to win the Championship, I want to win the Big Game...I want to be cured of Multiple Myeloma. 

So where does that leave us? Oddly enough, I will most likely return to Columbus soon, yes, The Ohio State, to get some of their thoughts and opinions on where they think I should head. I also anticipate a visit or two to see Dr. J in Chicago and and Dr. Barlogie in Arkansas. Simply put, these Doctors are my 'Seniors' who I go to when I have to make the decision of whether or not to go for two...although I am like Coach Hoke, I always want to go for the WIN!




Friday, November 29, 2013

Go Bucks!!!

Okay, why would a Michigan Man, who has a block M tattooed on his heart, dare say Go Bucks the day before one of the greatest rivalry in sports takes place between Michigan and Ohio (State)?!?

















Well...any place that wants to dominate Myeloma as much as I do has a room reserved in my heart.

It all started last Friday during a trip to The James (Ohio State's Medical Center) where I was meeting a couple of friends who shared the same passion to dominate Myeloma. They set up a meeting with Dr. Benson, Myeloma Specialist at Ohio State. They invited me, I accepted, and I soon found myself in enemy territory 8 days before the big game.

Dr. Benson offered to give my friend a tour of his facility, all his research and provide insight in how he intends to dominate Myeloma and find a cure.

With the last two blood tests showing a trace of Myeloma after almost two years of being cancer-free, I was willing to hear anyone out on their plans to kick Myeloma, even if it met traveling to Columbus.

The two hour time slot with Dr. Benson flowed over to three hours, and I must say, I left full of more hope than ever that the days of Myeloma are numbered, for me and the ~25,000 people in the US who are are diagnosed each year.

What I liked about Dr. Benson:

  • His Attitude: He is a former collegiate soccer player who has quiet competitiveness about him. You can tell, he is this fight to Win the Championship...a Cure. 
  • The Team: He has built a team  that consists of four Myeloma Specialists (that's a ton!) and 8 NPs (wowzers!) and has a number of bright minds in their graduate and fellowship program focusing on dominating MM. 
  • The Innovation: Having self-identified as an entrepreneur over the last few years, I appreciate innovation, especially in the area of Myeloma research aimed at zapping MM! Below is a top secret photo Dr. B revealed to us that shows Myeloma being doMMinated..literally. The top photo is some happy go lucky Myeloma. The bottom photo is its obliteration. 


With all this new found excitement and support of The Ohio State' Myeloma Research, don't be confused, tomorrow I want the scarlet and gray to be dominated, just like Myeloma. The passion I have to beat Ohio on the football field is much similar to the passion to kick cancer, but I am grateful that the shared passion that fuels this college football rivalry can be used to work together to dominate Myeloma for everyone!


Just to bring some balance to this post so folks don't think I am at all becoming a Buckeye, I want to give a major thanks to Jim Brandstatter and Coach Hoke for giving me the opportunity to continue to raise awareness for Multiple Myeloma this past Wednesday at Pizza House. Both schools are working to doMMinate this disease. 
















Remember, Hope is sometimes found where you least suspect to find it or the last place you would ever want to look. Keep Battling, keep the Faith and Go Blue!

Phil

Sunday, November 17, 2013

Our New, Old Reality

So, the results are back from UMCCC and there still appears to be a trace amount of Myeloma showing up in my blood test. Bummer.

Bummer because....

....I was really enjoying staying awake past 7:30PM because I wasn't so dawg gone tired every night b/c of the chemo
....I was hoping my children would never have to really experience our families fight with MM
....I was not expecting any sort of relapse for at least 5 years, if not ever
....I stopped thinking about Myeloma for 9 months and it was bliss
....I don't want to have to go back on chemo
....I spent 3.5 years dominating this thing and I was hoping that would be enough
....I don't want to give MM any more mindshare 
....I want to live a normal life of a 33 year old with a young family
....my business is taking off and I don't want treatments to slow that


Here's the good news....
....it's a very small amount which should have little affect on my body
....it didn't increase since the last blood draw
....treatments and research continue to advance
....I have it's number and I am ready to dominate it again


Life is so interesting. It is so unpredictable. I thank God for the great family and friends that have been placed in our life to help us through this next stage of the doMMination. 

Keep dominating life in your own journey. Overcoming challenges just gets you closer to the prize.

Phil

Sunday, November 10, 2013

Hope isn't a strategy...

..but it sure has been a motivator for me and my family as we continue to take on Multiple Myeloma, what is considered by most to be incurable.

Two months ago I got the difficult news that there may be a slight recurrence of the disease. This Tuesday I go in for labs to see if this is my new reality and whether the disease is again on the rise. Hope is powerful, it is critical and it's what helps push out the darkness in my life when this disease tried to pull me over to the dark side.

Life has been great, subtract my Michigan Wolverines struggling on Saturdays. My new job, which I took the leap of faith to join earlier this year continues to bring on new clients each month. We are always looking for more clients if you know anyone in sales and marketing who are looking to implement Salesforce or expand its capabilities! Like my new company on Facebook...one of my jobs is to grow our number of likes! :)

 Cassie and the kids are awesome. The highlight on the family front being our newest nephew who is already destined for U of M one day if his Uncle Phil has any say!




















Finally, my health is great. For a while, my body continued to nag me every time I tried to go for a run. It seemed as if I pulled a different muscle each time I hit the pavement in my running shoes. Thanks to some great friends, I have transitioned to yoga. It's been a blessing and a great opportunity for me to regain physical strength, flexibility and even stamina...Yoga is no joke! I have also found the meditative peace to be very helpful.

Expect a post in two weeks providing an update on my Myeloma numbers. I am hopeful that they will be zero, but in the meantime, I will be dominating life with the family!

Wednesday, October 9, 2013

Those Who Stay...

Living in Ann Arbor with a strong tie to Michigan Football is both a blessing and a curse. I love to talk about The Team, The Team, The Team, but it can be tiring reminding fans not to worry about close scares like the games against Akron and UConn, undoubtedly two of the worst teams in FBS college football. This is part of the journey.

Worry not Michigan fans, but be patient. The road to a Championship is not easy, and there will be many mistakes and close calls along the way. One of the most critical factors in being successful is knowing the end game. With Hoke, it's been made very clear and simple, win the Big 10 Championship. A few of my teammates congratulated Coach Hoke after the Sugar Bowl win and a 11-2 record after his first year. His response, "Don't congratulate me until the team has reached it's goal, and that's win a Big 10 Championship!" Below is a picture from last weekend where my 2003 Championship team was honored. Next to me is Coach Carr, who apparently still has some hops left!


When I was diagnosed with Myeloma in 2008, I quickly returned to my Michigan Football indoctrination which occurred over a five year span. I didn't just want to win the 2000 Orange Bowl or beat OSU, I wanted to win The Championship, which at that time and still is a cure from this disease.
Great news came over a year ago when I finally got a negative test result, my body was free from the disease at last. OSU had been beaten, The Championship seemed near and almost inevitable, we now just had to stop the chemo and hope for the same negative test results for 6-7 years.

The week after the Akron game I got a phone from my wonderful nurse practitioner. I was caught a little off guard because she doesn't typically call me to give me my lab results. She began to share with me that the blood test came back with a very small trace of M-protein, which is an indicator for Myeloma. Wow, I really didn't know how to respond. I was quite shocked to get the news.

After talking it over with Cassie, we decided together not to get discouraged. I now recall the scare against Akron, then UConn. This was similar, but much more personal. So what does this mean for me? Absolutely nothing as of now. Rather than wait 12 weeks for my next round of labs, I will be tested in 6 weeks.

Cassie and I question the results a little bit given that two years ago I had a spike of 0.1, which U of M referred to as a mono-colonal band of protein, whereas, UAMS (Arkansas) said it was poly-colonal (not MM related). Part of us wonders if this is a healthy band showing up, or whether it is truly a slight resurgence of the disease. Either way, we will have to wait for more data to know what is truly going on.

You know, winning a Big 10 Championship was never easy. It was 99% blood, sweat and tears, for that short moment 1% celebration. For my family and me, we will continue to give this fight everything possible knowing what it is we are setting out to accomplish...The Championship.



God Bless, Go Blue and keep doMinating

Phil