Monday, October 25, 2010

Myeloma Mondays #28: Matt from Columbus, OH

Matt is a very special guy who is a great MM advocate. We may be from rival schools, but our unique situation of being young with MM has brought us together. Matt is helping launch the first Columbus DomiNation event during the OSU vs UM game in should come if you are in the area!

Where were you born and raised?

  • Columbus, Ohio
Where do you currently live?
  • New Albany, Ohio

When were you diagnosed and how old were you?

  • I was diagnosed in August of 2009 at the age of 25. I was also diagnosed with a secondary disease, Amyloidosis. This disease occurs in about 10% of Myeloma patients.
Did you know what MM was prior to diagnosis?

  • I had no idea prior to my diagnosis. I think for the first week or so I kept referring to it as ‘melanoma’.
Is there anyone else your in family with MM?

  • There is not.
What led to your diagnosis?

  • I was feeling extremely fatigued. I literally did not have the energy to get out of bed or walk to the restroom.
How many times were you referred before actually being diagnosed?
  • I was luckily, only referred once before my diagnosis, though I spent 7 weeks in the hospital initially.

Where have you received treatment?

  • I was first treated at the Cleveland Clinic and now at the James Cancer Hospital at The Ohio State University Medical Center.
  • 8/2009: Started Velcade
  • Thanksgiving 2009: Last Velcade treatment
  • January 20th 2010: Stem Cell Transplant

Why did you or your doctor choose a specific treatment?

  • Because of my age and my previously good health history, my doctors have been extremely aggressive since day one. From the day of diagnosis and understanding treatment options, I always was preparing myself for transplant.
What has been the side effects of the different treatments?

  • It’s been fairly typical. Weight loss, hair loss, and generally feeling crummy. I’ve had some neuropathy from the Velcade, but it’s relatively minor.
What has been the hardest thing about your MM journey?

  • Other than coming to terms with the disease, the hardest part by far has been seeing the toll that it has taken on my family. At times it’s been hard not to feel like a burden, but seeing the strength and grace that they’ve shown has been a beacon of hope for me.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

  • First and foremost, do not focus on the statistics of life expectancy. These are outdated and the research for Myeloma is booming. Dig in and fight this disease with everything you have.
How have you been able to stay positive and encouraged in your MM journey?

  • I’ve got a phenomenal support base, my family and I got engaged after my diagnosis. My fiancĂ©e has been there through everything and seeing the good in people has really given me a perspective on life that I did not have before.

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

  • I was in bad shape, not just the cancer but the Amyloid caused my kidneys to fail. Going through all of that I just realize all of the important and precious moments that we encounter. So many times we overlook something as it happens but I’ve tried to step back and fully enjoy everything that happens.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

  • No.
What MM sites or blogs had you found good information from after diagnosis?



Doug said...

You are not and never will be a burden Son. We Love you and that is what life is.
You are as the meaning of the name Matthew, "A Gift from God".
We will fight this with all we have for you and for others like Phil.
Myeloma has gone from a cancer of unknown and little options of treatment to being on the verge or a Chronic Disease if not already there.
Enough is Enough. Time to find a cure.

Melissa Hare-Salisbury said...

Brother you are nothing but a TRUE HERO. Plain and simple. We NEVER think of you as a burden. We think of you as a son, brudder,fiance and an uncle!

Julia said...

Matt - it is awesome to see you out there living a "normal" life and moving beyond the nightmare of the past year. Living in the present and for the future is so important.