multiple myeloma for dummies

#365Thanks

2012-01-01T06:41:00.000-05:00

Into the new year we go. We don't know what twists and turns to expect in 2012, but I do know that we have a family, friends and a growing community that is battle tested and can take on the unexpected.

One thing that Cassie and I have learned over the years it that the twists and turns will always come. It's part of the adventure. So as I get twisted all about this year there is one thing I want to keep my eyes on...and that is being thankful.

I often speak out on "dominating" or "dominating life". Those are pretty loaded words at this point in my life, but this year as I continue dominating, I want to partner dominating with gratitude. Or explained in Phil terms, I want to dominate gratitude while I am dominating life.

Better yet, I want to follow someone else in this journey. Often times I find myself taking the lead, raising the flag, shouting from the roof tops. This year though, I want to learn to follow the lead of others. To encourage them, to support them, to shout from the roof tops in their effort to dominate and guide others to a better, more abundant life.

One leader I would like to follow is Alysa. Alysa and her family are straight amazing. Cassie and I met them while in Charlotte, NC and after only seeing each other twice in the total existence of our relationship, we knew we had connected with a couple that we would know for a long time.

Alysa has initiated the #365Thanks project (check it out). She is calling me to give thanks every day. What a simple idea, but man, this seems daunting. I have so much to be thankful since my cancer diagnosis, maybe this project will allow me an opportunity to recall it over all of 2012.

Myeloma Mondays #42: Tanner (Age 17!!) from Ft. Worth, TX

2011-12-05T01:08:00.000-05:00

Where were you born and raised?

Fort Worth, Texas

Where do you currently live?

In the same home all my life in Kennedale, Texas

When were you diagnosed and how old were you?

Official diagnosis was July 23, 2009 - age 17

Did you know what MM was prior to diagnosis?

No, I had never heard of Multiple Myeloma.

Is there anyone else your in family with MM?

No one in my family - or anyone else I've ever known has ever been diagnosed with MM

What led to your diagnosis?

A broken left tibia led to the diagnosis

How many times were you referred before actually being diagnosed?

Referred to three different doctors before receiving the actual diagnosis.

Where have you received treatment?

MIRT @ UAMS
Cook Childrens Hematology and Oncology Dept

Explain your treatment history:

August 7, 2009 - Chemo
9/2/2009 - Autologous Stem Cell Transplant
10/22/2009 - Autologous Stem Cell Transplant (Tandem)
01/02/2010 - Maintenance Treatment (weekly maintenance chemo - still ongoing at present)
6-2-2011 - Rod placed in Right Femur
7-15-2011 - Rod placed in Left Tibia

Why did you or your doctor choose a specific treatment?

Dr. Barlogie prescribed the most aggressive chemotherapy treatment and two autologous stem cell transplants because he felt that he needed to give me the most intense treatment possible since I am so young. He said that because I was young he knew I could handle the aggressive treatment and that he needed to hit the cancer as hard as he could in the hope of affording me a long life.

What has been the side effects of the different treatments?

The aggressive chemotherapy treatments have been the hardest thing I've had to endure. I was just so completley sick and week. I'm so grateful for the fact that because of treatment, I've been in remission for two years, but I hope I never have to go through that process ever again.

What has been the hardest thing about your MM journey?

The hardest thing about this MM journey is living in fear of it coming back. Fear of dying young.

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

The top lessons I've learned is that everyone who's diagnosed with MM is afraid, but we all have to learn to put the fear in the background and focus on our lives right now, this moment. We have to go on every day and believe that we are going to win this battle against the cancer that has tried to take over our bodies.

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

I met so many great people at UAMS in Little Rock, AR and they were great to me and my mom. I was the youngest person being treated there and I was like everyone's grandson and they helped me to become strong. When I came back home to Fort Worth, my maintenance treamtent has been done at Cook's Children's Oncology and Hematology Department and while it breaks my heart to see all the young children with cancer, the staff at Cook's has been great! They sent me to a summer camp in Montana where I got to hang out with lots of teenagers with cancer. It's the first time I've gotten to spend time with anyone my age with cancer. I know I'm not alone.

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

After being diagnosed, I've learned not to take anything for granted. None of us know what tomorrow's going to bring. We have to relish every minute. We've got to make sure the people who mean the most to us know how much we love them. Don't stress over the little things.

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

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

MMRF
Being Cancer Network
Multiple Myeloma for Dummies

Normal it is not, but we survive

2011-11-21T21:13:00.001-05:00

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.

In the beginning...

2011-11-11T05:50:00.001-05:00

...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!)

Job got roughed up

2011-11-08T06:36:00.003-05:00

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.

Y Not?

2011-11-05T05:37:00.001-04:00

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

Spirits are on the Rise

2011-10-08T07:29:00.002-04:00

Without a post in almost 3 months, you may have suspected I have disappeared. Well, sort of, but it is all good. I have moved into the state where I am getting checkups every 3 months to review the status of my M-spike, along with all the other key numbers.

The cancer progress...well...it hasn't progressed. I have been at a standstill of 0.1 M-spike since last December. This is great news. I am still on maintenance drugs to continue to suppress the disease, keeping hope that this will end up being a cure for my Multiple Myeloma.

The summer was wonderful. Our family is starting to come alive and although stress levels are still higher than I would like, we are moving beyond the day to day, week to week, craziness that Myeloma brings people. We are so thankful that our concerns of the day are returning to: What's for dinner? What kid drew on the wall? Where are my keys?

I sense the spirit continue to rise in and around us. The state of Michigan I believe is on the same path; coming out of the ashes to birth new economy; new hope. For my body, I am looking for a rebirth as well with my new immune system trying to find its way in this world.

As an athlete raised up in Michigan Sports....can life really get any better (see: Lions, Tigers, UM, MSU)?!?!? Here's a photo of me dominating the Lions game. I had not been to a game in 15 years.

Gone Fishing...dominating Life

2011-07-15T00:24:00.000-04:00

The fight last summer was focused strictly on aggressive treatment to dominate Myeloma, but this summer it has turned to smallmouth bass. After 3 years of thinking about and taking on Myeloma with heavy treatment, and at times, a heavy heart, this summer feels like it is a rebirth of passions that are part of a thick core of who I am.

The cancer forced me to re-evaluate everything, specifically where I spend my time and energy, not banking on that I will have the next 30-40 years to figure out life. Through this process of reflection spent during chemo infusions up at B1 and two week hospital stays on 8A, I have discovered what I am good at, my strengths. That has been helpful, but I have been lacking an ability to simply enjoy life. Much of it has been centered on domination, and not vacation. Below is me at age 7 showing the recent fishing domination.

I had a breakthrough by spending over a week up north (northern Michigan for non-michiganders) with my family at a park that has been the relaxing vacation spot for the Brabbs' family all the way back to my great-grandfather who would take my grandfather up there when he was a boy. Here are some photos of my revisiting one of my passions...camping/fishing up north. I am thankful that my focus can now move towards dominating life by enjoying one of my greatest pleasures.

The big kids and me heading to get ice cream at the store.

Me catching crayfish underneath rocks up at the dam. We use them for bait.

Iris and me relaxing on my parent's pontoon as we go for a boat ride.

pardon my ramblings. i have mush brain. i blame children.

2011-06-26T20:24:00.006-04:00

Hi friends!

I've been thinkin' that it's high time we updated our header here at MM For Dummies, so I went ahead and took the liberty of doing just that. Check it.

As Phil and I mentioned in our video blog a couple weeks back, we've been cruising through the summer, trying to figure out what "normal" looks like for us post-treatment. Well, I say post-treatment but Phil is still on maintenance chemo... so I mean the BMT nonsense of yore. 'Memba this?

Transplantin'.

Chemo these days is a pill that Phil takes at home, so we're a long way from the transplant floor. His pills make him tired and he has some neuropathy which are just about the only side effects. (I'm not on any medication and I have more side effects than he has... i.e. mood swings, laziness, attitude problems, voracious appetite, caffeine cravings, griping about the mess, etc. But anyway.)

We've had some awesome opportunities this summer to connect with the cancer community here in Ann Arbor and were also able to attend some fundraising events for UMHS, The Make-A-Wish Foundation, and the LLS. (Warning: probably do not bid on silent auction items after your second glass of wine. Anyone want to go see a comedy show?) These stories, these lives... the challenges that some people- like some of you- must face day in and day out is humbling to hear. Yet through it all, the resiliency of the human spirit is so incredibly beautiful.

When we started this blog in 2008 I would pore over the very few myeloma blogs that were out there, looking for new content, predictions, data, research... anything that would give me the definitive answers that I craved. I didn't find any answers, but instead we found friends. No one ever believes that cancer (or an accident, or any type of illness) can happen to you or someone you love. But it happens every day. And if you're reading this, then tragically you know how true that is.

BUT. You also know that there is hope out there, and much of that hope lies in the relationships that are formed through shared experience. We are grateful for the part each one of you has played in providing hope to us. We're just trying to figure out how to pay it back. Or forward. Or sideways. Somewhere.

Tomorrow is Phil's one year post-first-transplant appointment. It's so hard to believe that it's already/only been a year. Last year a wise friend told us that, once Phil was through treatment, it would just feel like the whole thing had been a bad weekend. And she was right. Except for the having-a-baby-in-the-middle-of-it part. That was pretty rad.

We're still keeping you guys updated through this here blog from time to time, even if there's not much to tell. Because hopefully that will be an encouragement to you. No news is good news, but good news is the best news. Pretty much.

Love!

Video Blog Update

2011-06-05T20:45:00.003-04:00

A video update from Brabbs-land.

Dominate for Kyle & His Team

2011-05-26T19:46:00.008-04:00

I was recently made aware of a 19 year old named Kyle who is taking on AML up at UM C.S. Mott Children's Hospital. He is a rock star guy from everything I have heard about him. I was invited to visit him today (thanks Ann!) to help provide some dominate cheer as Kyle continues to try to knock the AML down to the point where he can go to transplant, and his only hope for a cure.

Being back at UMHS, but this time on my own accord and not because of a blood draw, chemo infusion or transplant, I was awaken again with the reality that there are people everywhere, everyday that we will never know who are giving their all to kick cancer and continue to dominate life. Kyle is one of them.

Dominate prayer, positive thoughts, whatever you may call it, so Kyle knows Love surrounds him. Also, join Team Kyle by considering to get swabbed and added to the bone marrow registry. You could save a life.

My Life

2011-05-19T20:49:00.001-04:00

This describes it all. I feel Wildly Blessed. Cheers to domination.

I need to learn to keep my mouth shut

2011-05-12T11:57:00.000-04:00

Several months ago several individuals alongside the UMCCC develoment office had the idea of getting a team of dominators together to participate in the Annual Dexter-Ann Arbor Run who want to take on the mission of Cancer Kicker: Inspire others and Kick Cancer...specifically Multiple Myeloma.

I thought this was a great idea and that if 10 people signed up, I would run the 5k. I also foolishly said if 20+ sign up to take on this charge, I would run the 10k. I must admit, I was expecting just a handful of people to be up for this challenge. Well...guess again. We already have 50+ people signed up and I am sure that number will continue to grow.

That means....I need to start running some serious miles over the next 4 weeks. The race is at the beginning of June and right now I am slugging through 3 miles, once per week. Before I started the onslaught of chemo I ran in the Big House Big Heart 10K with a bunch of friends and we managed to push strollers the whole way and finish right around 50 minutes.

My goal this time is to finish. To keep my body moving forward the whole time, without walking. If over 50 people are willing to join the momentum we are building to dominate MM for good, I can find a way to get through this race! If you want to join, it's not too late (instructions here).

Time to go for a run. -Phil

Myeloma Mondays #41: Jeff from Salisbury, NC

2011-05-09T00:12:00.001-04:00

Where were you born and raised?

Born: Stuttgart, Germany (US Army); Moved to Salisbury, NC when I was 9 months old

Where do you currently live?

Salisbury, NC

When were you diagnosed and how old were you?

11/10/2009 - age 42, IGG Kappa

Did you know what MM was prior to diagnosis?

No, I had never heard of it.

Is there anyone else your in family with MM?

What led to your diagnosis?

Extreme pain in my back/sacrum. Turns out I had a compression fracture of the T-12 and 4 tumors in my sacral area; along with tumors in both my humeri and fibula and lesions on most of the flat bones in my body.

How many times were you referred before actually being diagnosed?

Where have you received treatment?

Wake Forest University Baptist Medical Center's Cancer Care Center

Explain your treatment history:

11/2009 - started first of 10 radiation treatments to the tumor in my left humerus
12/2009 - started first of 35 radiation treatments to the 4 tumors in my sacrum
12/2009 - started first of 4 cycles of Velcade-Doxil-Dexamethasone
2/2010 - received melphalan in preparation for stem cell harvest
4/2010 - autologous stem cell transplant
7/2010 - vertebraplasty for T-12 compression fracture
7/2010 - tried maintenance Revlimid 10 mg (failed - neutropenic)
8/2010 - radiation to stubborn tumor at T-10 (10 treatments)
8/2010 - 12/2010 - off and on the maintenance Revlimid 5 - 10mg with poor results
2/2011 - finally able to stabilize on 5mg of Revlimid
3/2011 - increased Revlimid to 10mg (and side-effects begin) failed again
5/2011 - re-started Revlimid 5mg dosage

Why did you or your doctor choose a specific treatment?
I requested to be treated aggressively. I was "young" and in great shape before this took me down. I thought I would be up and running again in no time.

What has been the side effects of the different treatments?

With the VDD/radiation treatment, the biggest side effect was fatigue. I also had styes on both eyes that my hemalogist-oncologist related to the velcade.
The chemo put me into a post-menopausal state, which has remained.
Once I had the melphalan, nausea was the worse followed closely by the loss of all my tastebuds.
Now with the Revlimid, the fatigue is back.
I continue to have back pain and spot tenderness at the sites where the tumors were located.

What has been the hardest thing about your MM journey?

Accepting that I cannot do the things I loved to do before --- rafting the Gauley; hard-impact exercises; hardscaping my lawn; walking my big dog, Joe. Accepting that I may not be able to work like I worked before. I have had a hard time embracing "new normals."
Fear of relapse has been pretty constant. I really wish they would re-do those statistics!

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

Stay strong in spirit...you will get through the treatment.
It's ok to lean on others for a while.
Seek someone outside your inner circle that you can talk to...a counselor, spiritual leader, etc. Someone you can really vent to without having to worry about worrying them.

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

I am one of the lucky ones to have a supportive family - parents, sisters, husband, son - who have walked this whole journey with me. I also have great friends and neighbors who have been there for me and Jeff, too.
My dogs, Gus and Joe, were wonderful companions. We started calling Joe, Dr. Joe, because he was constantly by my side when I was at my sickest. His 88-pound body actually was very healing. It was like a full-body compression heating pad.

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

Priorities. Prior to diagnosis, I was a workaholic. I worked 10 - 12 hour days in a stress-filled job, and loved it! Now, I would rather spend my time with my friends and family...spend time in nature...spend time with my dogs. I've decided to just be good at work and great at wellness for the rest of my life.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
Yes. Prior to going into hospital administration, I was a horticulture therapist. I handled a lot of pesticides, fungicides, herbicides, and fertilizers.
Immediately prior to my birth, my father was in contact with Agent Orange in Vietnam.

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

Myeloma Beacon
MMRF
Crazy Sexy Cancer (Kris Carr) - not a MM site, but a different way of dealing with having an incurable cancer

M Spike Remains 0.1

2011-05-04T06:30:00.004-04:00

After several months off of maintenance recent labs show everything to be unchanged. My M-Spike remains at 0.1 and my other numbers look solid. The real good news is that the neuropathy I was feeling in January, has gotten much better. I am sure 14 months of intense treatment just caught up with me, so the little break was probably needed and definitely enjoyed.

I have been slow to document how things have been going, mainly because with the reduction of cancer treatment, life has picked up. A third kid in the mix takes away from much of the free time I experienced in the past. I find myself cooking pancakes "with syrup mistakes" in the morning for Ocean and helping him get ready for school and the day ending with a hour routine to get the kids in bed. By 8:00pm I am pretty spent and Cassie and I use this time to watch a movie or read together.

All in all we are returning to our new normal. I am still very passionate about putting an end to Multiple Myeloma. I have given several talks over the last few months to help build Multiple Myeloma awareness and encourage people to push through their own life struggles. That has been very rewarding.

Lastly, we celebrated back to back birthdays this past week. First, our precious gem, Ruby, turned 1!!! She continues to smile in delight and shower her love and joy on anyone willing to receive. Following her birthday we were blessed with the birth of another nephew. His name is Eli Philip and he already has the "Hail" and "Go Blue" fist pump down and he is not even a week old.

I hope everyone continues to dominate and if you are interested, let me know how you are doing by leaving a comment!

Myeloma Mondays #40: Geert from Hamburg, Germany

2011-04-18T00:39:00.001-04:00

Geert with his little duck pottery with football and helmet (almost blue and maize) in a small souvenir shop in Spain last year.

Where were you born and raised?

In was born 1965 in Hamburg, Germany

Where do you currently live?

Hamburg, Germany - I´m still living in Germany´s most beautiful town

When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)

08/12/2009 – age: 44, IGG Kappa

Did you know what MM was prior to diagnosis?

I even haven´t heard a word about it

Is there anyone else your in family with MM?

No, nobody

What led to your diagnosis?

Nothing specific, I´ve just been weak all the time

How many times were you referred before actually being diagnosed?

Just one time. My doctor sent me directly to the hospital and the first blood test showed the MM indicators

Where have you received treatment?

Asklepios Hospital, Hamburg, Germany

Explain your treatment history:

09/2009:3 cycles PAD
01/2010: Autologous Transplant #1
04/2010: Autologous Transplant #2

Why did you or your doctor choose a specific treatment?

Fortunately our team of doctors is really experienced and we have a dedicated ward for stem cell transplants. So, the decision was based on the “typical” criteria (staging, etc.) and the doctor´s experience

What has been the side effects of the different treatments?

No, side effects at all

What has been the hardest thing about your MM journey?

The first days after diagnosis when I and my family started to understand what it really means.

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

Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”

Find a team of doctors you really trust

Learn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctors

Start to fight MM, comply to the rues the doctors give you and finish your treatment plan

Never quit!!

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

From the first day till complete remission – With the help of my wife, daughters, family and friends. As soon as possible live your normal live even during times of chemo and during hospital stays. In times of cell phones and internet it is quite simple to stay connect when being in hospital. I´ve used internet video telephony to talk with my daughters because they were not allowed in the transplant ward. I also follow the various sport seasons on the internet. For me it also worked quite well to stay in contact with my colleagues and see progress on the projects I used to work for before and between my hospital stays. But not all these things might work for other MM patients as well. Everybody has to find his own way but I hope some of my ideas will help.

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

Some things became less important but today (one year after the last HDCT/transplant and with great results) it is pretty much as it was before. Of course from time to time I think about MM but not too much. When time is limited why should I waste it by thinking about MM all the time. The thing I have changed is that I fulfilled some of my plans/ dreams. After being in Ann Arbor and the Big House I wanted to also see a game at Penn State. That´s what I did last year.

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

Maybe my father during WWII

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

The IMF website and on facebook and the DKMS on facebook

This one hurts

2011-04-09T21:32:00.010-04:00

Last summer I received a phone call from Vada Murray after a little phone tag. We had no problem connecting. Both of us were diagnosed with cancers that were not very fitting. Vada, a non-smoker, was diagnosed with lung cancer and I received a diagnosis of Multiple Myeloma at 28, forty years younger than the majority of MM patients.

Playing football at Michigan and a freak diagnosis were not all we had in common. We both happened to have three kids, the oldest being a boy, followed by two daughters. I could not help but feel connected with him.

During the one and only conversation we had he stated that this was a battle he was not going to win. I really had a hard time hearing that. It's a reality with those taking on cancer...He knew his fate.

Last week Vada Murray passed away. Today as I attempted to give tribute to him and his family at UM's Relay for Life I broke out in tears for a man I hardly even know, but feel so close to. It hurts to think about his family right now.

My speech was focused on the Fight Back theme of Relay for Life. It was very fitting. Thinking of Vada makes me want to Fight Back. I have always just wanted to dominate, but now I also want to fight back for him and his family. I don't have a lot of words right now for what that means, just tons of emotion probably centered on feelings of injustice for what his family is having to go through.

For all those who can make it, there will be a memorial service this Thursday at 11:00am at Cliff Keen Arena.

No News, Is (often) Good News

2011-04-01T05:07:00.006-04:00

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

2011-03-14T00:01:00.002-04:00

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?

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!

2011-02-28T00:16:00.002-05:00

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

2011-02-24T00:01:00.002-05:00

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!

2011-02-21T12:47:00.002-05:00

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

2011-02-17T00:01:00.004-05:00

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

2011-02-15T07:33:00.005-05:00

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?

2011-02-14T00:01:00.001-05:00

"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