I thought today would be a good time to just put a little update on how I'm doing and what's upcoming. This post is going to be pretty dry, but I think its important to know where I am right now.
Since this all started last Spring I have been through a number of phases. Back at in last May and June it was kinda touch and go. There were definitely days when we were unsure of how long we'd continue to fight. Chemotherapy and external drainage while uncomfortable had made things more stable. It seemed like this thing could go on for a for a little while.
At this moment the drains were internalized, meaning the bag I was carrying around wasn't necessary. We still have external ports that need to be flushed daily. The drains also need to be replaced every couple of months by an interventional radiologist. Chemo is being suspended temporarily. The chemo, while fighting the tumor, also destroyed the veins in my arms. Getting IV access for chemo was really becoming impossible.
So this week we're going to move to radiation therapy. Basically over the next month or so I'll head in daily to have X-rays shot at the tumor. Hopefully that will keep the growth at bay.
Long term plans are kinda up in the air. I have clearance and have consulted with a surgeon to get a port installed that gives continuous access to my jugular vain for chemo. My biliary drains might be fully removed if the doctors think that I am able to drain the bile on my own.
Basically, I'm learning more and more about cancer and my body every day. I trust my care team to be honest and do what is best for me.
Day to day life is not what it used to be but it closer to what it was. I have transitioned from being at home all the time to working limited hours. This week I finally worked a 40 hour week. What I do at work depends on my fatigue for the day and where I am with treatment. My bosses and my work group have been great allowing me to do what I am able to do day to day.
The plan for the future includes getting back into a little more exercise. I realize I will not be able to do what I was 2 years ago but I think I can find a new limit that I can handle. Hopefully my family life will get to the point where we are fighting he cancer in the background instead of everything revolving around my treatments.
Basically I have learned the best way to live my life is one day at a time. Maybe I might feel tired and need to adjust my expectations for that day. Maybe I feel good and my plan for the day should take advantage of that and change accordingly.
I'd love to wake up and find myself cancer-free. I pray for that every day. Where I am now I feel like the cancer is a part of my life and I need to learn to live with it and make the most of the days I'm here. The tumor is part of me, but it is not the determining part of my life. I am in control if it, it does not control me.
.jfif)
.jfif)
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