Trials and tribulations

I have been feeling wonderful! My cancer seems to be in “drug induced”remission! It has been a journey for sure. Last year at this time my medications seemed to be working but weren’t. My liver was taking a much needed break from all this nonsense and stopped filtering the way it should. My belly was growing and growing. I didn’t know why? I was hardly eating anything. I couldn’t fit in my clothes or a booth at a restaurant, I couldn’t tie my shoes, and since I am kinda short 5’2” I couldn’t reach the clutch and fit behind the steering wheel of my mini! I didn’t know what was going on? I felt pretty good otherwise. Almost everyone I know with cancer gets skinny, I on the other hand looked and felt about 15 months pregnant! What is happening? This is crazy! This was starting to get out of hand I would get out of breath easily and it was getting hard just to roll over in bed. Help!
So back to the hospital. Of course this is where I find out about my liver and they drained over 4 liters of fluid from my abdomen. What a huge relief. I felt like a new person. They also did a liver biopsy since there were cancer cells in the fluid. There was a small amount of activity found in my liver…great. About 3 weeks later I am back at the hospital and they drain off over 6 liters of fluid, this sucks, literally! So now it is either get a drain put in for me to use at home or go to the hospital all the time to get it drained, either way yuck! So they surgically put this tube in my abdomen and send me home with bottles and bandages. I can’t even look at it! It doesn’t really hurt just seems super gross. This tube hanging out of my side. I couldn’t drain it at first, my husband took on that roll. It wasn’t hard to do, just creeped me out. We got 1000 mil liters a day at first.
Then in January of this year I finally got accepted into a clinical trial. After two infusions the amount of drainage stopped and they took the tube out! I am so thankful. It was a life saver at the time, bad things can happen with fluid just floating around in your body. But don’t get me wrong I’m happy to have that thing gone! And with a little more time you won’t even be able to see the scar…maybe my Victoria’s Secret career can still happen! Lol The body is an amazing thing!
The trial medication seems to be working. I have to get an infusion every 3 weeks and we are working to get the dosage right for me. As with all this stuff there are side effects. I get nose bleeds, I’m cold all the time, my hair was thinning, I get little sore bumps on my skin in various places, crazy thirst and when I get too much I get oh so tired! I have had to take a break two times to get a little relief from these things. I found out that collagen peptides help with hair! I go back for my next infusion this week and they are lowering my dose. Hope it works!

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