Buckle Up Baby. Welcome to My Roller Coaster.

About two months ago, I realized that I should probably post a medical update as I was getting a lot of questions as to “where I was” medically.  Valid question. I created this blog to quickly keep my buddies informed of my medical condition, but somehow I’ve to taken it in another direction.  A.D.D. at its finest.

It was about that time I wanted to tell you everything was great, but then I started getting pain.  And although I’ve successfully managed the pain itself (mostly thanks to medical cannabis) a side effect is fear.  Fear my tumors were growing. Fear of the unknown. Fear that one day I would start to throw up and then do nothing from that point on but manage it.  But, with a lot of help and a lot of love, I’ve coped and patiently waited.

At my monthly visit with my oncologist last week we discovered that my tumor markers (a blood test that measures the protein my tumor produces) had doubled.  My physician ordered another set of blood tests and scheduled a CT scan.  Unfortunately, the second round of blood work came back and my tumor marker have doubled again.  So it’s now clear that my body is no longer responding to my current chemo regimen.

We thought my only next option was to find a clinical trial in which I could participate.  As my luck would have it, there isn’t a single clinical trial in country for my type of cancer.

So I was confronted with another moment that time stood still.  Could I go to Ruidoso for the baseball tournament this weekend?  Can I go to Canada next month?  Am I out of options?  Do I run to Europe to see what options are there?  Liver transplant in Mexico City?  If I happen to find a clinical trial in South Carolina, who can come with me?

But the good news–and thank goodness there is good news–is that we found another treatment regimen that is an FDA approved chemo that I can get here.  I don’t understand the ins and outs of it yet, but I’ll let you know more of those details once I do.  This is what I do know: the average life expectancy is 20 months.

Now, that might sadden some of you, but it doesn’t sadden me. Not at all.  I’ve been diagnosed for 15 months.  By the time I got diagnosed, I was so sick I felt like I was knocking on Death’s door.  After my fourth round of IV chemo the Grim Reaper was standing behind me.  When I came back from Boston I had no idea how much time I was guaranteed, and I really only lived about six months at a time.  I was terrified that from that moment forward I may never feel “normal” again.  But since then, it’s been quite the contrary.  I’ve felt great!  Look at everything I’ve been able to accomplish, see and experience!

Twenty months buys me the most important gift of all… Time.  Time to research all of the stem cell, polio virus, proton therapy, CBD oil, sage burning, new medicine and old medicine. Time to wait for “options that aren’t even options today” time. Time to love and be loved.  Time to get back to my job which I love, value and appreciate more everyday.  Time to watch more baseball and football.  Time to travel, cook, taste and drink.  More time to kiss my baby and harass my husband.  This is MY time.  And, I will try my damnedest not to take it for granted.

6 thoughts on “Buckle Up Baby. Welcome to My Roller Coaster.

  1. Life shrinks or expands in proportion to one’s courage. – Anias Nin
    You have superlative courage. You haven’t let your disease shrink your world.
    You seem to be feeling very alive, perhaps more than you ever have.
    I praise you and pray for you. Keep your positive energy flowing strong and your fingers crossed!!
    You cannot predict the ways it will help you.

  2. Love, love, love YOU!!! You are the MOST remarkable and special person that I have the privilege of knowing. thanks for keeping us updated (and inspired).. xoxoxoxo

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