immunotherapy complications

For the past two months I've been sick on and off as a result of side effects from the clinical trial of a new immunotherapy drug. I was removed from the trial in August after the cancer continued to progress. Then I spent some time in the hospital with what was hypothyroidism. Went on levothyroxine. I went on a dream trip to Budapest and Prague the first two weeks of Sept. But, I kept get sicker, mostly with gastrointestinal issues. I had to leave Prague a few days early and flew straight home and went into the hospital. 21 days in hospital while my immune system appeared to be attacking my body. Lots of tests, some surgeries, touch and go moments, much of which I do not remember clearly, which is probably a blessing. Was very miserable and asked to go home on hospice twice but the docs werent convinced that it was not the right time for that yet and here I am!

I did not present as some people have in the past when their immune systems go haywire like this. Apparently there is some pattern to it and I wasn't following patterns. Also, disagreement among specialists caused problems until my original ONC took over and worked with the study dr (who doesn't have hospital privileges) to get me to a more stable place. I'm better, but a long road of recovery ahead. I have good days and bad days. Have great difficulty keeping electrolights in balance so was on daily fluids but now on every other day. Progress! Am able to eat small amounts 4x day which is helping with energy a bit but still very weak and dependent. Tiny walks several times a day, sisters who are taking turns staying with me, support, prayers, love from good friends, my children and their families are what are getting me through. Also, the care and concern from the women on this board! 

I'm still hypothyroid, on blood thinners from clots that happened in iv and pic  lines, etc. steroids to keep immune system in check, pain patch (my new best friend), new port, and some other meds for the digestive side effects that are like colitis though I don't really have colitis (its the immunoresponse). Blood levels are checked 3x week to try to keep electrolights, thyroid, etc in balance. 

Friday I turn 64! I wasn't sure I was going to see this birthday and now I am so happy to say I'm going to be 64! When I was so sick I asked for no visitors. Not sure they would have been allowed anyway. But now I am ready to thank my friends and family for their love and support and prayers as I really believe that is what helped guide my doctors to making some good treatment decisions for me. I'm celebrating by having a litte catered supper Friday night and of course, cake! Just an hour and a half with my closest who live here and my kids. I am beyond happy I can celebrate with them! I want to thank them each in person for being my friend.

As I recover and regain some independence and strength I will reflect on where my cancer journey will take me next. I've tried so many things and it may just be time to say enough, let me stay comfortable and enjoy what time I have left without interfering with the course my disease wants to take. Or, maybe I'll get stronger and feel like trying something to see if it can hold the beast at bay a little while longer. I don't know at this point. These are such difficult decisions we try to make, dealing with an inexact science, as we duel a beast of an illness, that has so many promising treatments looming out there, but no one "silver bullet." How do you make your decisions?