Wednesday, January 1, 2020

Happy New Year!

2019: The Year in Review

What a whirlwind of emotions 2019 was after getting re-diagnosed with a disease I thought I had beaten 10 years earlier.  Shock, surprise, denial and disbelief: those words certainly all apply.  But as the year drew to a close, it has become clear that 2019 was not so bad after all!  Consider the following:
  • Though diagnosed with Stage 4 metastatic cancer, there is currently no evidence that the disease has spread beyond my pelvic region.  Obviously that is a far better scenario than having it spread throughout my body.
  • We have seen slow yet steady shrinkage of the tumor since I started on Yondelis back in February.
  • The current treatment plan has been confirmed by Memorial Sloan Kettering (MSK), an NCI-designated facility and leader in sarcoma research and treatment.
  • I currently have the best health insurance I've ever had in my life.  Few providers would cover out-of-state second opinions and/or treatment, but the plan I'm on now does!
  • My mobility has thus far been unaffected by the tumor.  Furthermore, given how smoothly the treatments have been going these past 9 months, I have been able to keep working full time without the need to go on disability.
  • Our family was able to go on a "trip of a lifetime" cruise to Spain, Italy, and France in the early part of summer.  Though expensive, I have no regrets whatsoever about going on this very special family trip.  Those memories will last a lifetime!
  • My younger boy (Kyle) graduated from Brookwood High School and has completed his first semester in Art and Digital Animation at Kennesaw State University.  Both he and his older brother (Bryce) are doing very well in college.
  • Had a wonderful time with friends, family, and neighbors over my birthday.  And just two months later, we had a fantastic Thanksgiving reunion with the Holbrook family here in Atlanta.  These relationships are priceless!
So yeah, not so bad of a year after all!

Recent Scan Results Raise New Concerns

I had a Pelvis MRI this past weekend (on 12/28/2019) and just got the results back for that on Monday (12/30/2019).  Unlike all previous scans, which showed at least some shrinkage every time, this scan shows virtually no difference from my previous scan of 3 1/2 months ago.  Furthermore, the radiology report indicates some sort of "new soft tissue edema enhancement noted along the right lateral ischial tuberosity [i.e., bottom right butt cheek bone] of uncertain etiology.  A new focus of disease cannot be excluded."  This is definitely not the news we were wanting to hear.  So what changed?

One thing that has changed is that my chemo schedule has gone from every 3 1/2 weeks to every 4 weeks.  Originally I was getting chemo every 3 weeks, but that was just too hard on my body and my schedule, so Dr. Ummed (my Oncologist at Georgia Cancer Specialists) agreed it should be fine to stretch this from 3 to 3 1/2 weeks.  And with the results from my September scan still showing promise, the chemo schedule was extended once more to every 4 weeks.  Therefore, it is possible that perhaps I need to either up my dosage of Yondelis, or increase the frequency of my treatments (neither of which is easy).  For the time being, however, Dr. Ummed wants to stick with the current dosage and schedule and then rescan a bit earlier, such as in the February or March timeframe.  Based upon those results, we'll consider our options at that time.

Also a possibility is perhaps the tumor is building up resistance to Yondelis.  That would actually be the worst case scenario, so let's not go there quite yet.

And let's not forget that radiation at MSK is always an option for me to consider.  It's also an option I do not wish to rush, given the potential for life-changing complications.  I also need to stop over-analyzing the situation now and just sit tight until I get my next scan results, which will provide a clearer indication as to where things are headed.  Like many things in life though, this is easier said than done!

2020: "The Power of Hope"

Yes, "The Power of Hope"!  That was the theme for the 2020 Rose Parade . . . and it's a good theme for me in this coming year too.  With health concerns still abounding, I need a little hope this year to keep me going.  Don't we all?!?

But what is "hope"?  For me, I prefer to think of it as an action, something positive that a person does that makes somebody's day a little brighter:
  • It's the friend that makes you laugh.  
  • It's neighbors who smile and wave whenever you're around
  • It's family who is always there when you need them most
  • It's the beaming smile on your spouse's face
  • It's people showing compassion to strangers and those in need because it's the right thing to do
  • It's people who "pay it forward"
Perhaps most importantly, hope is not all about just receiving.  Hope can be found in the giving and the doing as well.  It's very contagious that way.

As we approach the year ahead, may we all find (and give) hope in large doses!

4 comments:

  1. Happy to read your news.
    I hope Yondelis continue to be effective.
    I hope 2020 brings new discoveries in science.
    Do not neglect radiation therapy (for example hadrontherapy, which preserves the surrounding tissues).
    Best regards
    Dario

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  2. Hi Dave, I have been reading your blog which, since my partner was diagnosed with liposarcoma at Xmas this year, has been a huge source of courage for me. Is there a way I can message you privately if you don’t mind? Warmest wishes

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    1. Sorry for the late response Bethany. Sure, please email me at dnovak1961@gmail.com

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