Gone Fishing...dominating Life

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.

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

A video update from Brabbs-land.

Dominate for Kyle & His Team

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

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

I need to learn to keep my mouth shut

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

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?

• No.

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?

• 3

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

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

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?

1. Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”
2. Find a team of doctors you really trust
3. Learn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctors
4. Start to fight MM, comply to the rues the doctors give you and finish your treatment plan
5. 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

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

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