Doubting Belinostat

I remember when I was first diagnosed, I just HATED telling people. The look of sadness and fear would take over what was usually a happy face a moment before. I realized just how much I value being able to give people a cheerful interaction in life - I'm hooked on trying to make people happy.

So...sharing sad things is hard.

I have laid in bed for hours until finally getting up before dawn again, debating on this post. I am most honest here. I also fear I bend toward self-pity here.

I am disappointed. I recorded how I was feeling before starting this targeted chemo regimen so I could remember how badly I felt and why I made this decision. Even reviewing that list of symptoms,   I'm questioning this decision.

It's not just Belinostat, as the doctors presented it - it's also the anti-nausea (4) drugs, the protein pump inhibitor IV and oral meds, the steroids IV every day of treatment and Prednisone as needed, which I should probably be starting again but I am hesitating to call the doctor.

If I could have managed the symptoms with Prednisone alone, what's the point of the Belinostat and all this other stuff with all the side effects????

The days of treatment, I end up feeling lousy as soon as I get the Belinostat. The 5 days after, I feel like I have the flu most of the time, my face feels funny, like it's swollen, and I have heartburn that I keep trying to deal with naturally but that is just there - and I feel like I have food/pills stuck in my esophagus as night which can make sleeping hard. As that eases up, sinus headaches start. Again, I try all the natural remedies but nothing really touches them. They can make me feel nauseous. Monday after treatment I start with aches and pains again. My ankles, knees, wrists start to hurt. Yesterday, Thursday after treatment,  my right wrist had a row of small, hard, sore growths form under the skin. Overnight, my wrists and hands have swollen up so I'm glad I don't have rings on. It's hard to move around and I feel pretty miserable. I've also been getting more and more ocular migrants and my eyes always feel out of focus and strained.

Belinostat was supposed to help with all of this. It's only been 2 rounds but it appears that using Prednisone is the only way I'm going to get some pain free days in and am I now relegated to about 20 days a month feeling lousy like I have the flu? I feel like I have waded into the pool of western medicine, only to be getting deeper and deeper into the pool, wondering if I'm going to be able to get back to shore. I am thinking of calling Dr. West and NatureMed in Boulder. She's a very knowledgeable ND. I don't like how her office operates and it's all cash but she knows cancer and may have some guidance for me. Of course, her recommendations will be tons of supplements, AIP diet, exercise, rest, mediation. All these things are all my responsibility. It has been a bit of a relief to think a drug could just take care of it and I could just cruise for a bit.

I know I still have choices. I know I still am loved by God who is for me. I know things could be much worse as I see what others with this kind of cancer are dealing with on our facebook groups. I know there are people who pray for me and that has always made me feel safe. I know my next options will present themselves at the right time.

I'm still reading tons about and by Corrie Ten Boom and related authors and started listening to her on YouTube. And I'm still trusting Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."