Monday, April 18, 2011

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

Saturday, April 9, 2011

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.

Friday, April 1, 2011

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.