Thursday, July 26, 2012

Fatigue is nothing. Freedom is everything.

Yesterday I had my first check up since starting back on chemo maintenace a month ago. A regimit that is expected to last a minimum of two more years, or 23 months if you are like me and keeping track at home. When asked if I have noticed anything since starting back on chemo, the only response I had was fatigue. I prefaced that with several statements on how I have exercised more lately, the kids have been wearing me out and that I am staying up later. My terrific nurse practioner didn't bite on my ability to push aside possible relationship between the chemo and return of my fatigue. The response I got:

"Sounds like you are full of 50% optimism, and 50% denial." 

Man, she knows me too well. Maybe it's this combination that allows me to domiante beyond the true reality that I face each day with Multiple Myeloma. One thing that was not denied was that the results of my blood labs and my bone marrow biopsy came back squeeky clean once again. I am still free of Multiple Myeloma. #score #doMMinate

I have learned from others who have gone before with this disease that you can't let up, that you need to remain focused and ready to react. I believe this persistence will produce a cure and that I will find freedom from Multiple Myeloma along with a multiude of others.

Time for a nap.



Monday, July 23, 2012

Myeloma Mondays #46: Greg from Saranac Lake, NY

Where were you born and raised?  
  • Saranac Lake, NY
Where do you currently live? 
  • Castle Rock, CO
When were you diagnosed and how old were you? 
  • 12/18/2009 – IGA Lambda Light Chain MM
Did you know what MM was prior to diagnosis? 
  • No
Is there anyone else your in family with MM? 
  • No
What led to your diagnosis? 
  • Tumor on my left hip
How many times were you referred before actually being diagnosed? 
  • First signs showed up in urinalysis, but family Dr. wasn’t sure what it was and didn’t push me to see anyone.  Turned out high # was a marker for MM.
  • Saw family Dr (1.5 yrs later for hip pain)  Xray revealed nothing
  • Went to PT for hip pain
    • 3 visits didn’t make it better
  • PT Sent me to Orthopedic guy – haPT Sent me to Orthopedic guy – had MRI
  • Then to oncologist high # was a marker for MM.

Where have you received treatment? 
  • Colorado Blood Cancer Instittute (CBCI, Denver, CO)
Explain your treatment history:
  • 12/18/2009:  Initial diagnosis
  • 01/2010: radiation of hip tumor
  • 01/2010 – 07/2010: Rev/Dex
  • 07/2010: cytoxin in prep for auto SCT and collection
  • 08/04/2010: Melphalan – Day-0, auto SCT begins
  • Short-term disability from work until 10/05/2010
  • Numbers begin to creep back up steadily over the next several months.  
  • 10/2010 thru 6/2011 – Back on Rev/Dex
  • 06/2011-09/2011: Rev/Dex/Velcade
    • Numbers come down to remission, go onto maintenanceat Velcade once/3wks, MM comes back strong and fast again.
  • 10/2011 thru 2/2012: Rev/Dex again w/ Velcade once a wk.
  • 02/2012 thru 6/2012: Thalomide w/ Velcade once/wk
    • Numbers climb fast in May/June…decision made to do tandem auto/allo SCT.
  • 07/16/2012: begin DT-PACE
    • Plan is to get numbers down with DT-Pace and go into Auto SCT after 2nd cycle in 2 months; followed with allo-SCT 60 days post Auto-SCT.

Why did you or your doctor choose a specific treatment ?

  • My Dr. is being aggressive with my treatment as I’m considered young (50 yr male) and historically have been in great shape.  Before MM I was consumed with cycling in my free time.

What has been the side effects of the different treatments?

  • Fatigue, GI issues top to bottom, brain focus on drugs, general anxiety.

What has been the hardest thing about your MM journey?

  • Uncertainty.  Fear to make long-term plans.

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

  • Continue to make long-term plans!  Plan to be around for a long time.
  • Surround yourself with your good friends and family.

How have you been able to stay positive and encouraged in your MM journey?
  • I know things could be worse.  I’m thankful for my 2 great kids, my family and friends.  I have an understanding employer, great insurance and found the time to be right for the nice sports-car I could never afford before.  Makes trips to/from the clinic more fun for sure.

After being diagnosed... What perspective was changed the most?
  • Life is short and unexpected things can come into your life.  Don’t squander today.  The Serenity Prayer puts things in perspective…don’t fuss over what has passed, but instead live in the NOW!

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?

Saturday, July 21, 2012

What mountains have you climbed lately?

One of my very first friends, Erik, tweeted the following photo of him recently on top of Castle Peak at 14,265 ft. Erik is currently a football coach at Michigan Tech, and without a doubt, was the first person in my life to exhibit how to dominate on a daily basis. Him and I competed in sports for a number of years before eventually becoming teammates through middle school and high school. He brings a tenacity to competition that I have never seen replicated at they same intensity.

I have yet to climb a mountain, but I have found this journey with cancer to be a similar experience. It is quite a hike and very dangerous at times, a wild adventure to say the least. If you choose to look down in the valley for too long, you can instantly be succumbed by fear and doubt.  You realize how fragile your life really is. But......

Through perseverance and the support of others, you keep climbing. One foot after the next. At times you focus on your breathing, and others, you just want to give up. But that's not a solution for those who choose to dominate. Rather, it's an opportunity to compete on the stage of life. And eventually, there's an opportunity to move from just surviving, to thriving. 

And although I have yet make it to the top in my own cancer journey, I must say it's because of people like Erik who have come alongside me and showed me what it means to dominate that I am able to keep so positive, and to remain competitive in some of the most challenging hours. 

What's life without climbing a few mountains along the way? When we get to the top, man, what a sight it will be.



Friday, July 6, 2012

Wearing a Ruby around my neck

Our family had our annual family photo shoot this summer and as I was scanning all the photos for the 9,482 time I got stuck on this one:

For me, this captures my relationship with Ruby and also possesses a strong reminder the role Ruby plays in our family. You see, at diagnosis, the hardest thing to swallow was the thought that my oldest child, Ocean Philip, would never grow old enough to have any memories of me. At the time, Ocean was 2.5 years old.

Almost 4 years later, Ocean is now six, 4'2" tall, and has a mean soccer kick he may have gotten from his daddy! To add to the beautifully unfolding story, we added a third child to the mix after a lot of prayer and some doubt on whether having another child before starting rigorous chemotherapy was the "right" thing to do.

Well, today that third child, Ruby, is almost the age Ocean was when we were handed the cancer card. We were told by one of the UK MM bloggers that rubies are known for their blood cleansing properties in many cultures. Ever since her arrival my cancer has diminished to the point where it is no longer detectable.

Beyond the mystical blood healing properities, our Ruby constantly wraps herself around us and reminds us to have a clean and joyful heart. She has the most adorable laugh and gregarious personality that we wish we could bottle up and sell on Amazon.

I will forever wear this beautiful Ruby around my neck.



Monday, July 2, 2012

Only 544 more pills to go!

3 pills down and I estimate only 544 more to go! People are asking me if I feel any different just several days in to this two year maintenance journey and I don’t quite have an answer to that. I do recall the chemo I took over the last few years to have a more cumulative effect on me.

To counterbalance the side effects this time around my  plan is to to fight fatigue with exercise; or said another way, fight fire with fire! It may seem counter-intuitive, but I think it could help keep my blood counts at a more healthy level. Chemotherapy adversely affects the ability to produce normal level of new blood cells, hence the risk of infection (low white blood cell count) and low energy levels (low red blood cell count and hemoglobin). I am

Emotionally I have shifted my transmission to the dominate gear and I am filled with a lot of peace and hope about our future as we continue fly through this journey of uncertainty . We appreciate the continued prayer and support of many.