For the majority of my diagnosis, I’ve been completely non-symptomatic. Its been an anomaly through the whole thing. I had initial pain when we found the intestinal tumor, but after my surgery and recovery, I’ve been completely normal.
Until about a month ago. Then the soreness started. You know the feeling you have the day after a really hard ab workout? That became the daily feeling. Not ideal, but manageable. I could live, work, and overall cope.
Then two weeks ago the pain became progressively worse. At one point excalating to the point of needing an ER visit. The overall answer was that my pain was related to ascites, a buildup of fluid in my abdominal cavity due to the disease. Mild pain meds prescribed, but still nothing was really helping. I began asking doctors about a possible drainage, like we had done with the fluid around my lung. My doctors were for the idea, but wanted to get everything else lined up and ready to go before we scheduled that.
So finally this week I was able to meet with my new doctor, Dr. Chrisyian Meyer, the sarcoma specialist at Johns Hopkins. He immediately set into motion plans for me to become prepped and ready for treatment. I did all the necessary testing, am having a port placed on Tuesday, and have the promise of beginning my first round of chemo a day or two later. And with all these plans, my doctor had his care coordinator work to schedule me for a paracentesis - a drain of my abdomen.
So that was yesterday. It was a super easy outpatient procedure, absolutely minimum discomfort.
And during this they removed over 9 pounds of fluid from my abdomen.
I’m going to give a lot of space before the picture below. WARNING: This is a photo of the fluid removed. It’s just containers of fluid, but if that skeeves you out, scroll through.
After we finished with that, I actually felt like I had room in my stomach for the first time in nearly two weeks. Joe and I were able to grab lunch, and I began to feel relief.
Unfortunately, not for long. I hoped for this procedure to help with the pain so I could begin to feel better BEFORE chemo. But I’m still sore, waves of pain and nausea keep coming, and so extremely exhausted.
The exhaustion. I‘m not sure if it’s a symptom, or a symptom OF a symptom. Is this from cancer making me tired, or am I tired because I’m in pain and unable to eat? But I’m so tired. Small tasks exhaust me. I have to stop and take breaks putting on my makeup. It’s absolutely maddening.
I have always been a DOER. I once moved two boxes that weighed a total of nearly 400lbs from my front yard to my back yard because I couldn‘t stand to wait one day for my husband’s help. And right now, I can’t do. It’s killing me. Is this just how it is? How it is until I beat this or this beats me?
Having symptoms is so scary because it makes it SO real. I can’t have a day where I don’t have cancer. I now feel it. Feel it in the place where it’s threatening me. It is affecting my life with my children. They are growing accustomed to saying goodnight to me ask I lay in bed. Used to me being asleep as the fatigue takes over.
This isn’t the time I wanted to spend with them.
I hope that with chemo, the attack on the cancer will help with the symptoms. I can’t accept this drastic a change in the quality of my life yet. I won’t.