Jump to content


Photo

My CML a year later and how I wound up in the middle of relay for life


  • Please log in to reply
11 replies to this topic

#1 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 04 June 2011 - 07:57 PM

Today turned out rather interesting and not at all as I planned when I got up.  I did some exercise this morning and told my wife I was feeling pretty good today and I would take the kids out so she could have some time to herself.  It doesn't happen as much as I would like, so when I am up for it I try.  I took the kids for haircuts and then to lunch, next stop was the park.  When we got to the park at the high school there were a lot of cars there and one parking lot was closed, there was an event taking place.

We went to play for a while, wound up going for a hike, and then were going to head back home.  As we were getting ready to head out we heard music coming from the football field and the boys wanted to check it out.  I was feeling a bit tired but still pretty good so I pushed forward.  When we got up the field we walked in and there were signs for Relay for Life, we got funneled onto the track and the next thing I know we are walking around the track doing laps.  Someone handed my kids lanyards and explained with each lap they would get beads.  My oldest loves this kind of thing and we started accumulating beads.  I had to laugh at the irony as I was walking.

During our walks we were passing by different booths reading different tributes and all the other things you would expect at a cancer fund raiser.  Mind you, my children and most people in my town do not know about my CML.  A short while later the opening ceremony started.  A little girl who had survived cancer gave the opening commencement speech.  All I can say is that I am glad I was wearing my sun glasses.  Next thing up was the survivor lap, this is where all the survivors walked a lap to mark their beating cancer, I was reminded that we never really get to call ourselves survivors, our battle is ongoing.  I'm not a survivor, I'm surviving!

Just as the lap started and the music came on (Josh Grobin - You Raise Me Up) there was not a dry eye in the place, one of my wife's friends walked up to me and gave me a hug.  She knows about my CML and her 9 year old son is an ALL survivor and he was walking around in the survivor lap.  The second lap was for the caregivers to walk with the survivors and she pulled me by the hand with my kids and we walked the second lap with her son.  It was so surreal as we walked around the stadium with people cheering and clapping, I just looked at her and said "I don't know how I got here".  As I recall the day I realize that I meant that on many different levels.

It was unique moment for me to be in as I come up on my one year anniversary in a couple of weeks.  Last night we took the kids to a circus at their school, we had attended the same circus last year and it is the last memory I have before being diagnosed.  It's been a strange year and today was an interesting day.  Despite it all, on more than one occasion today I stopped, looked up to the sky, took in a deep breath, and felt grateful to be alive.....


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#2 ChrisC

ChrisC

    Advanced Member

  • Members
  • PipPipPip
  • 39 posts

Posted 05 June 2011 - 12:28 AM

  Great story, thanks! You deserve to have walked the lap around with the other survivors!!


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#3 cometbro

cometbro

    New Member

  • Members
  • Pip
  • 0 posts

Posted 05 June 2011 - 08:09 AM

Wow that is so surreal. Very nice story.



#4 MACELPatient

MACELPatient

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts

Posted 05 June 2011 - 08:30 AM

What an awsesome story.

We may not all belive in a higher being but stories like this make me belive that there is and that he/she work in mysterious ways.



#5 lthouse612

lthouse612

    New Member

  • Members
  • Pip
  • 0 posts

Posted 05 June 2011 - 08:50 AM

That was a really great story Lucky!  Thanks for sharing it.....



#6 Skittles

Skittles

    New Member

  • Members
  • Pip
  • 0 posts

Posted 05 June 2011 - 10:54 AM

Lucky, with tears running down my face, I thank you for sharing that very emotional day with us.  I feel the same as I walk the 'Light the Night' walks but there everyone knows about my CML .  Your walk was one in which you were feeling so many things without anyone knowing about your condition.  I'm not sure I could pull that off.

I so enjoy reading your posts and am glad you are nearing your one year mark with  good health and wish you a long timetime of memories.  Skittles



#7 lala

lala

    New Member

  • Members
  • Pip
  • 0 posts

Posted 05 June 2011 - 02:53 PM

Lucky, YOU are making me cry!

~lala



#8 janner25

janner25

    New Member

  • Members
  • Pip
  • 0 posts

Posted 06 June 2011 - 08:11 AM

Lucky - I agree with Lala - I cried...had goosebumps. What an amazing story!  That song gives me tears to begin with - and now I think has a completely different meaning.



#9 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 06 June 2011 - 09:02 AM

Luck,

I am grateful you are alive too!  Long life to you!  May you continue to survive!  I am not a total believer in "things happen for a reason".  However, I am less skeptical about "flow" and "syncronicity".  I cannot help but believe that there is some order to what many consider the "chaos" that gave all of us life.

Teds



#10 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 06 June 2011 - 09:33 AM

Thanks for the nice feedback everyone.

Thinking back the day had a very Forrest Gump feel to it.  I was kind of like the leaf just blowing along and wound up in the middle of something quite extraordinary.

Hope everyone is feeling well today!


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#11 TroyLynn

TroyLynn

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 June 2011 - 10:56 AM

Now I will have to watch Forrest Gump.....your story made my day.



#12 Rissa

Rissa

    Member

  • Members
  • PipPip
  • 12 posts
  • LocationMaryland

Posted 10 June 2011 - 12:17 PM

That's a great story.  Warms my heart.  Thank you for sharing it.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users