The State of Affairs v.5.
Its been awhile.
If you're in RVA or love someone who is, you probably know the reason already - on day 3 of round 4, just about an hour after I returned home from my infusion, a huge summer storm rocked our little city. My neighborhood bore the brunt of it, and Hope and I were without power from around 8pm on Thursday until around the same time on Monday.
It wasn't the best time.
But I fared better than many in my 'hood and power is back now and I am grateful.
But it was a rocky few days.
Its hard enough to not feel well for seven days straight. But throw in displacement from your home, the inability to use the coping strategies you finally cobbled together, and all your visitors being pulled away to deal with their own lives (which do actually go on while I am living in cancer world) and you've got yourself a disaster. Now, I'm generally one who does fine in a power outage. Give me some candles and a handful of books and I'm set, but that doesn't fly during chemo week.
It was not the best time.
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Physically, round four has been fairly uneventful so far. My side effects were a little worse than usual - particularly the nausea - but I think that's to be expected given the complications of the storm. My nurse was able to get my insurance to cover an on-body infusion device that I get to wear home from my chemo infusions. It allows me to get the Neulasta injection I need the following day without going back to the hospital to be given it. Its a little bulky and cumbersome, but its worth wearing it for 24 hours to not have to travel on a really yucky day.
So this leaves us with (hopefully) just two more rounds of this really rough regimen. Just 14 more chemo days. 28 more oral doses. 2 more infusions.
But my countdown is shifting a bit again, as with my new oncologist my chemo week days are moving over by a day. So for the last two rounds, I will start on a Wednesday and end on a Tuesday. Infusions will be on Fridays now.
Just when you think you got your head wrapped around everything.
My blood work for this round looks good. My counts are all down, as they should be, but not down scary far. The only exception is my platelets, which creep lower each round. There is a chance I may require a transfusion next week if this keeps up. For now, it just means lots of nosebleeds, problems with clotting, and bruising if a mosquito bites me (I'm not even joking with that last one).
* * *
If you follow me on Instagram (@kaitykasper) you know that my mid-way CT scan looked great. The lesion on my liver has decreased in size by 13.2%. I wont bore you with the other report details, but Dr. Carter was very happy with it. That same week, my CA125 (tumor marker) number went up - when it should ideally be going down. No one seems that concerned about it - lots of things can impact that number - and both my intuitive and my acupuncturist think it has a lot to do with how much blocked energy we have been releasing in recent weeks. Even though I trust them, I will be on pins and needles over that number until we test it again.
* * *
Sleep is still problematic. Today I feel so tired I almost want to cry. I truly wonder if I will ever know a good night of deep sleep again. If I ever do accomplish it, I am certain I will weep tears of joy.
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[Trigger Warning - This next section may contain triggers for those with a history of disordered thinking around food]
I've developed a new body-related issue in recent weeks - I discovered recently that I am becoming very restrictive and critical when it comes to my food intake. I am pretty certain this is my mind's way of attempting to control something in a world that is completely out of my control right now. In particular - my mind is trying to control the fluid issue by doing what it can to keep my stomach under control - by not eating.
I find myself examining my abdomen almost hourly. Definitely every time I am near a reflective surface. I weigh myself multiple times a day. Despite my team telling me to EAT ALL THE THINGS whenever I can, my mind criticizes every food choice I make. Every time the scale goes down, to my mind it means the fluid isn't coming back. Its my mind's way to try to beat its nemesis.
Don't worry - my therapist and I are already all over this. She says the fact that I could identify that this is happening is a good sign and we are already working on ways to cut this off before it spins out of control (for starters, I have a scale free to a good home if anyone wants one!)
* * *
On the mood front, to be honest, I am tired. I am over it. I feel very much like I did around mile 20 of my marathon - like I don't think I possibly possess the energy to get to the finish line. I'm in that zone of miles where the cheering crowd has thinned out, the cute outfit I put on that morning looks more like it belongs in the housecleaning pile, and my iPod's battery has finally died. I'm in the mile when Tim decided he had to lie to me and tell me "you look amazing!" because he could read all over me that the truth (that I looked like hell) would mean I would never make it to the end.
I am irrationally angry at all forms of social media right now. Honestly, I should probably shut down my accounts and take a six month hiatus, but I want to be able to keep people updated on this whole situation and I am in a place where I want to talk to or see very few people - so social media and this blog are the best ways to keep folks out of the dark. I am starting to think all those "not yets" are actually "nos". I am angry about this situation, frustrated that I am stuck here again, and wondering if in another 14 years I won't be back in this boat.
My faith is hanging in there, but it resembles a garden flag that has withstood a long, rainy winter. Its tattered, and stitched together in places. Faded, frayed, weathered. But its there. And even as the enemy screamed in my ear during the last few days of this round - and continues to do so in these early recovery days - that faith keeps hope alive in a small back corner of my heart - the place where God still - even after all this - whispers, "I know the plans I have for you."
Round four is taking much longer to recover from, physically, emotionally, spiritually.
But I know the finish line will come. And deep down, I know with Him I can get there.