No News, Is (often) Good News

No April Fools...I am alive and well.

I recently have been logging hours back at work. I am focused on customer upgrades to a new version of our software. Throughout the week I will hear nothing about upgrades and in my status meeting that I facilitate I always enter it not knowing what to expect. Although, 90% of the time if I haven't heard about something prior to the meeting, no news is good news.

That's the case with the project we took on last year to re-boot my immune system and dominate Multiple Myeloma. The reprogramming process is going well, albeit I have been dodging sick kids left and right over the last two months. All there is to report is a little neuropathy which we are throwing a lot of Vitamin B at and postponing maintenance.

Most of my time is centered around the kids and coming alive as a dork again by growing interests in what Cassie reminds me are dorky things like studying Customer Development in my spare time. So life is returning to our new normal. It hit me last night that three kids is like three points in space that create a flat plane (unless they are linear of course, Phil = dork). With one and even two kids, we had a lot more freedom, but with the third, our playing field is set and now we can focusing on growing a fun and awesome family.

To that end I have enjoyed every moment of every day that I get to hold and interact with Ruby. She turns 1 this month as I head towards my one year anniversary of my first bone marrow transplant. Cassie and I cannot even recall any memories of Iris until she was two, so we are gobbling up Ruby time.

Although we may not ever believe Iris existed prior to age 2, I am falling more fondly in love with this girl the older she gets. She now says that she loves me, but only in addition to mommy. She'll even kiss my knee from time to time. Last weekend we went out on a date to her restaurant of choice and she even dominated a sundae...yum!

Ocean continues to grow and mature at a speed unknown to man. I now know what it means to be extroverted. He can't get enough daddy time and he wants to do everything that I am doing. So he's a little dominator in training with a great sense of humor. Last week when I took him to school he got all the kids calling him "bobble head" in stead of Ocean.

I hope everyone else is well and still dominating! I hope to engage the MM community more as our life continues to stabalize after a year of colorful chaos.

Myeloma Mondays #39: Jody from Baltimore, MD

Yet another young 30 something taking on Multiple Myeloma with two young and adorable children. One than turns 5 today! Jody is graciously documenting her story via her own blog; so add another trooper to the myeloma community that is going to help bring awareness to this disease and educate us all throughout her own personal journey to dominate Multiple Myeloma! Here is a detailed account of her diagnosis.

• Jody's Blog: M is for Myeloma

Where were you born and raised?

• Warwick, RI

Where do you currently live?

• Baltimore, MD (Also lived in Boston and Dallas)

When were you diagnosed and how old were you?

• 12.22.2010, just turned 34. I'm hyposecretory Kappa light chain with numerous focal lesions. I have a t(11,14) translocation by FISH, and am low risk by GEP

Did you know what MM was prior to diagnosis?

• As a research biologist with some background studying carcinogenesis I'd heard of it, but didn't know any specifics.

Is there anyone else your in family with MM?

• no

What led to your diagnosis?

• I broke two ribs last summer. The first doctor to see me did mention multiple myeloma, but there were no smoking guns from the tests he ran and I don't fit the demographic so he didn't dig too deep.

How many times were you referred before actually being diagnosed?

• I started having another painful spot at the end of October and I found myself a new doctor. He referred me to an orthopedic oncologist, who ran the SPEP and did a fine needle aspiration of one of my lesions. The SPEP was normal, but the lesion showed atypical plasma cells. He then referred me to a myeloma specialist at Johns Hopkins. I then went in search of several other opinions after doing my homework on different treatment approaches.

Where have you received treatment?

• Myeloma Institute for Research and Therapy in Little Rock

Explain your treatment history

• I just started TT4 LITE.
• MVTD-PACE induction followed by stem cell mobilization
• Tandem ASCT
• VTD-PACE consolidation
• VRD maintenance for 3 years

Why did you or your doctor choose a specific treatment

• The first doctor gave a very "choose your own adventure" recommendation. Start with a choice of 3 drug induction, do an ASCT immediately or wait until later, and consider maintenance therapy. By this time I'd done a lot of my own research, including finding lots of great blogs and websites and also reading a lot of the primary literature and scientific reviews on myeloma. I'd also had enough people mention Arkansas that I knew it needed to be considered seriously. I questioned my Hopkins doctor about it and she restated basically the concerns I'd heard repeated time and again. No one can say the outcomes are better, it's harsh treatments, and you may risk something by using everything up front. I booked an evaluation and also an appointment at Dana Farber for a third opinion. In the end I knew Arkansas was the place for me, but I know it's not for everyone.

What has been the side effects of the different treatments?

• I'm only 6 days in, so only very minimal. A tiny bit of nausea, a little tingling from the velcade, and pretty tired today.

What has been the hardest thing about your MM journey?

• Thinking of my family and how this will affect them, especially my kids (age 2 and 5).

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Do your homework and reach out to other patients!! There are so many wonderful people out there willing to share their experiences and perspectives and it's been so incredibly valuable contacting people. I can't even imagine how difficult it is for someone who doesn't know much about biology to get to the bottom of all the different treatment approaches out there, but make sure you ask questions and find a doctor who can take the time to help but things in terms you can understand.

How have you been able to stay positive and encouraged in your MM journey?

• At first it was not easy at all, but know I'm in a better place about it all. It's not helpful to get stuck in the muck of feeling helpless and scared and sad. It is important to work through those feelings and to acknowledge them and address them, but you've got to able to move past them. My husband has been an incredible support and has helped pull me through some of that. In the end you have to accept the lot in life you have and do everything you can to life your life to the fullest and embrace every day. As a clinic nurse said to me the other day "tomorrow is not promised to me either".

After being diagnosed... What perspective was changed the most?

• Gosh probably everything. I think living with cancer like this just makes me slow down and reevaluate the important things in life. I'm more dedicated to living in the moment.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• I'm a research scientist so I've worked in many labs. I've worked with some toxic chemicals and also with cell lines containing human and animal viruses associated with cancer so there is definitely a concern that could have contributed. My father is also very worried that his exposure to agent orange in Vietnam could have been passed along to me somehow, but I think that's very unlikely. I have a PhD in Environmental Health Sciences with a concentration in molecular toxicology so I am really interested in links to environmental exposures especially since more and more young people are being affected.

What MM sites or blogs had you found good information from after diagnosis?

• Too many to list them all...this one of course, also Myeloma Beacon, International Myeloma Foundation

***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil

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!

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.

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.

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: http://spilledmilky.blogspot.com/

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 yesterday...watch 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 fcm.muth@gmail.com as seating is limited.

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!

-Phil

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.

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.

-Phil

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

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.