On Monday night, I verbally diarrhea-ed on here. I hadn’t posted in a while and I wanted to get some of the thoughts swirling in my brain out in the hopes of processing them a bit better.
It doesn’t “fix” anything, but typically, it does help me by making things a bit “clearer”.
I wrote about things being difficult or hard and they are….but I think that the hardest or most difficult thing (for me) is that this is such a long term journey.
It’s not like this will be over in a few days or even a few weeks. We are talking YEARS before this journey is over. The knowledge of that is hard for me.
I try to stay “in the present” and I believe that was something that God led me to over this past year knowing that I would need that piece of wisdom to be able to make it through all of this.
But it is a long term journey and I find the uncertainty of it all to be quite frustrating. We are currently in the second stage of treatment, and after this stage is complete, we have 5 more stages to go over the next 2+ years. Only one of those stages is a repeat of it’s self and so for the second time around that stage, we should know what to expect (except in that repeat stage we have radiation to deal with which adds its own uncertainty and unknowns), but for all the other stages, it’s all new and unknown. The drugs might be ones that she’s had before, but at different doses and with different drugs and there is so much unknown and uncertainty in regards to how Angelica will feel or respond physically and even emotionally and also in regards to the schedule.
I haven’t done so well (in the past) with unknowns and so that makes all of this hard for me.
I like to know.
I like to plan.
I like to organize.
And for this…..I can’t. I can’t even say what the calendar is going to look like because although we know what schedule we are following, the schedule can be delayed by low counts and then everything is once again off…..
This makes “planning” things difficult and any of you who know me, know that I LOOOOOOOVE to plan. So to feel so out of control makes all of this even more difficult.
For example, It’s Josiah’s 3rd birthday today, and looking at the calendar and the schedule of Geli’s meds and this week is a bad time to try to plan a party for him. Geli might be feeling okay this weekend, but her counts put her at risk and so it would be better to plan a party for him in a few weeks when her counts should be high….but, that might not be the case….her counts might still be low or….worse case scenario…she might be in the hospital. That’s not something we’re wanting or hoping or even really planing for, but it is within the realm of “possibility” and that uncertainty is something that I find difficult.
I can look at this whole situation know that one summer, one fall, one winter, and one spring of huge uncertainty followed by a few years of a little bit more known schedule is really not that big of a deal in the “grand scheme of life”. We can do that. It’s not THAT big of a deal and it will come and pass quickly.
For example, I can’t believe that Josiah is three years old. I remember waiting for him to be born and now here we are three years later….time passes by so fast….
But to be sitting in the middle of it all is difficult. It feels so intense and pressured and so SO tiring.
THAT is what weighs on me….and being able to talk about it helps a little. It doesn’t make anything better or take any of the “difficult-ness” away but some of the pressure of it all feels a bit uncorked and eased when I talk about how I’m feeling.
Thanks for your encouragement and comments that let us know that we’re not alone and that you’re thinking of us and praying for us. This is a bit of a weird and lonely time and yet, I know that it’s only a season and that each step further down this road takes us one step closer to victory, freedom and a whole new “normal”.