Topic: Ups and now downs
I've been having a very tough time lately. I do not have anyone in my life that I can talk to about the roller coaster ride of this disease, so here I am venting and looking for support! I spend every moment of free time I have researching my dad's symptoms and options. Over the course of the last few months, I have been pushing my dad to change Doctors (to Dr. Zhu at MGH). He complains all of the time about the treatment he's currently receiving at Dana Farber, but he won't do anything about it. There is only so much I can do myself. He doesn't take much control of his situation (if any), which is very burdensome on me. I know it's not fair to me, but I don't know what else to do. I spend little time focusing on my own life and my own happiness and it's really starting to have a major effect on my well being.
We were so happy after his CT scan mid-Feb which showed a large reduction in the disease in his liver. We even got the okay to hold off on SIRT because he was moving in the right direction. A few days after the scan and last treatment, my dad started to get high fevers and lower abdominal pain, so he decided to skip a treatment. The pain got worse, but he didn't go into the hospital in hopes that it would just clear up on it's own. He went into Dana Farber two weeks later and had to skip another treatment because the pain was so bad. They did a CT scan to find the issue which happened to be colitis. He was immediately placed on antibiotics and is actually feeling much better. That is the good news. The bad news is that he has had aggresive disease progression. There is also a renal lesion that was always referred to as a cyst that has increased in size. There is also growth in some lymph nodes (which could just be due to the colitis, but could also be because of disease). They noted free fluid in the pelvis area and early portal hypertension. All of these things are not good. The problem is that we do not know if some of these things are due to colitis and/or from missing a treatment or if the treatment itself is just not working any longer. I just wish he had gone into the hospital earlier instead of waiting around for the colitis to get out of control. Then he might have only had to miss one treatment and not two.
I left a few message for the radiologist about scheduling an appointment for SIRT. I don't even know if it's still on the table at this point. My dad has an appointment at Dana Farber today to discuss his options. I can't be there, nor am I really up for it anyway. It just blows my mind that you can be doing so good one day and the next it's like everything is going wrong and is out of control. His surgery back in March of last year was so successful. It was a miracle at that point and we truly believed that he was on his way into remission. I feel so cheated. There's really no other way of putting it. I'm praying like crazy and looking for all options. I even reached out to NIH about the clinical trial of TIL. Just feel sad, lost, alone and scared, but trying to push through and know that there are a lot of ups and downs.
"Attitude is a little thing that makes a big difference." ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes." ~Hugh Downs