It has been awhile since I have done a post to publish. The last one I did is still a draft and will not see the light of day. I tended to talk in circles.
This one circles or no, I'll publish.
I'll be the first to admit that when they were talking about Covid-19 back in January and February I wasn't worried. Concerned yes, worried no. I figured it would have been on the spectrum of the Zeka virus.
Then comes the shit storm of March. I had a CT scan done where they found three tumors and a potential blockages in the small intestine.
Covid-19 was taking over and things were starting to get locked down. Or self quarantining if you will.
Then I get a call Apri17. Get to the ER at Mary Washington. Thank God that Jim and Liz were on their way here and almost here.
In the meantime the world is locking down borders, running out of PPE supplies. Hobby sewers and professional all turn to making masks for the hospitals. Hospitals are making employees sign for their homemade mask.
Ok, now I am in the hospital, Doctor says Monday we are doing surgery on you. Comes back later and says, no, we are doing surgery on you Sunday. I'll have my "A" team here. Oh lucky me.
Doc explains they are going in to remove the blockage of the small intestine. If they can get some of the tumors that would be a bonus. But, and this is a HUGE but. I may end up with an ileostomy bag. Temporarily. Depending on how healthy the small intestine is.
Well, I wake up to find out that they were able to get the blockage, and all three of the tumors. The tumors were all located near the blockage. I am left with two things. A small intestine that is the smallest it can possibly be and live, and an ileostomy bag.
The one thing I kept saying I don't want. A bag that I have to take care of because I constantly shit it in. To say I was/am horrified puts it mildly. I am horrified and embarrassed.
They teach me how to change the bag and empty it. They can't teach me how to deal with the leaks, the seal letting go, shit running down my leg, the bag letting go during the middle of the night, No, these are all things I have to learn on my own. I have to learn to deal with and accept. Besides, it is only temporary.
They wouldn't release me until I was sure of changing out my bag. Every other day I had a nurse that specialized in bags show me and watch me change the bag.
Ten days later I am home, building back up my strength and building my confidence with the bag. I was getting my strength back, walking, eating, showering. Almost a "normal" life. I even got to drive.
In the meantime, the Covid virus is still in the head lines, people are getting antsy to get out and try to have a life beyond quarentine. Governors are talking about lessening restrictions in phases.
May 17. I remember looking at the calendar and thinking only 4 more weeks. I can deal with this for four more weeks. Ate well that day, and played Catan with Jim and Liz. (I lost) but I felt good. Decided to go to bed about 9, got a sudden pain in the lower left absomen. I figured it was nothing and that I'd lay down and breath through it. Boy was I wrong.
The pain kept intensifying with no breaks. After about thirty minutes, I tapped out to the pain. I texted Jim saying I had to go to the ER, I couldn't take the pain anymore.
Getting me to the ER involved an ambulance ride, luckily they had a "chair" they could put me in to handle all the stairs. Off to Mary Washington ER. Once there I got checked in, and had to wait. When they finally got me in back they couldn't give me anything for the pain because my blood pressure was so low. But in the meantime, a CT scan was done.
Air in the small intestine, and ulcers. So they took a non surgical approach to the ulcer in the intestine. I had so many IVs going they finally put in a pik line (took two tries). I had IVs on the pik line, attached to my port, plus and IV in my right arm and hand.
Everything was going in through the left arm. It swelled up and started leaking through the skin. My vena cava is reduced in size, so my system is working on rerouting my veins. Lots of little veins to take over. Well, that produced a huge swelling of my neck. In fact I had no neck and couldn't swallow. Two doses of super steroids helped with the swelling and swallowing issue.
In the meantime they do another CT of the instestine, they discover cycsts. Off to get them either cut out or at least drained. They could only drain them. More antibiotics. While that is all happening they do an ultra sound of the neck and left arm. Turn out I have several blood clots.
They put me on blood thinner and draw blood every four hours. They can't use the left are for blood because of the pik line and swelling, so they used the right arm. My entire arm turned black and blue. Never mind the right arm is swelling too. Just not leaking like the left. Looking at my right arm today you would swear I was a junkie there are so many needle marks on my arm.
It seemed every time they "fixed" something, there was something else to take its place.
I finally said enough. No more. No more chemo, no more trying to use poison to make it better. I was feeling weaker and weaker every time something was done. No more surgeries, even if that means I have to keep the bag. I have had enough.
I am doing hospice. At least at home I can try to get stronger. And no more blood draws. Enough is enough.
My family understands why I decided what I did. In fact I am stronger today than when I came home a week ago. Still weak, but stronger.
I've been technically fighting cancer since 2003. Although I did have seven years of no evidence of desease. I am tired of taking poison everyday. I am tired of the anxiety over scans and waiting to hear what the doctors have to say. I am just tired.
I'll take time with my family and friends and what peace there is left in this world for me.
What was going on in the world while this was happening? Riots, protests over a wrongful death. Demands for justice.
Anyway you slice it, since March of 2020 this year turned to shit for everyone.
Please be kind to your neighbors, family, friends and strangers. Your small kindness can make someone's day better.
