Monday, June 19, 2017

Where's Dory?

After completing my 12th infusion on June 5th I have been spending time resting and recovering. This last infusion was the hardest physically and emotionally and I have found that I needed some time to retreat and reflect on the journey thus far. 

The completion of the 12th infusion is not a finish point but rather a point of complete fullness.

Imagine a large bath tub.  For the past 25 weeks, someone has come and poured a bucket of poison into it every two weeks.  There is a small drain that is open and drains away about a bucket every 24 weeks. (The first bucket is now gone and there is a percentage of each other bucket that is draining away as well.)   Nevertheless, the exchange rate is insufficient and the drain cannot keep up with what is coming in.  Eventually, the tub is as full as it can be.  No more buckets are being added and the drain is still open, slowly bringing the level down.  It will take another 23 weeks for it to empty the tub completely.

In other words, as I was getting each infusion, my overall toxicity was rising. First, fairly dramatically, but then when it reached its peak it leveled off.   For the past 6 or 8 weeks, the level has been barely tolerable. Thinking of it that way, the symptoms and side effects have been more severe and longer lasting.  

The good news is that we are over the hump in terms of infusions.  Now it becomes a slow waiting game.   

What some may not realize is I get exhausted very easily.  The nausea, fuzziness, anxiety, fatigue, and GI issues are always close by.   Yesterday, a walk from my house to parents (about 450 steps) that included walking up the steep driveway (Mt Dorsey) had me gasping for breath.  

The drugs also make me more emotional.  I cry easy and often but  also laughs and finds joy.  

I fear that others won't understand that the journey continues and will think that because on the outside I look pretty good, that I should be able to do much more. That since the infusions are done life can go back to the normal (whatever the heck normal is). 
Fear creeps around every corner, in unexpected shapes, ideas, thoughts and scenarios. 

These are not things that I have tried to hide from any of you but rather things that are not easily seen or understood when there are not daily or even weekly interactions. Those that see me at church each week may not realize the amount of prep and rest required for me to attend, they only see the joy and my presence and for that I am glad. However, I am reminded that its not about the destination as its about the journey and I have promised to share both with all of you. 
I have been reminded that its not how you start the race but how you finish that matters the most and I have been challenged to finish as strongly as I began focusing on Joy and the blessings along the way. 

All that being said, your prayers and support continue to bless and amaze us.  
We cannot thank you enough.  We know that we are loved more than we can imagine.

And so we wait... 

for my scan on the July 3rd
for healing and restoration 
for remission and hope 

And while we wait, we find joy 
in a simple cup of coffee
sunny drives with the top down
time with loved ones 
and always with my Sparkles