We always knew this journey wasn’t going to be easy. What we didn’t realize or could have known was how difficult it could be or would become. Deep down inside I had an inkling, a fleeting thought, an impression that the worse was yet to come. It was impossible to understand or put this into any context because I had no frame of reference for it. It was just one of those feelings.
The cramping was beginning to intensify in both frequency, duration, and intensity. At this point I basically stopped tracking the episodes because it became regular and frequent. The next CT scan was due at the end of August, but the way she was going, we decided it would be better to move it up to the middle of August. By 8/8 it became pretty bad so I ended up scheduling the scan for 8/13 and see the oncologist the following day to review the results. That Saturday and Sunday prior to the scan were by far the worse days. Still we decided to take the girls out for a little fun at Griffith Park. There’s a part of Griffith that I didn’t know existed where kids can go on pony rides and train ride. There’s also a Merry Go Round from the early 40s that will take you back in time.
A curious thing happened that following Monday. The pain and cramping suddenly subsided. Monday was a good day with only 2 episodes. Tuesday was better than Monday, and the rest of the week was pretty good. We still had the scan on Tuesday and met the oncologist on Wednesday. Based on what she had experienced the prior 8 weeks we had an idea of what to expect. And as expected the results were not favorable.
The tumors grew.
It was alarming but we nonetheless held out hope that it had only been 2 months. The oncologist was a little more subdued this time around, but still gave us no hope for a long term survival. He gave us 4 options (all chemo and one experimental genetically based approach). He advised us that “people general do better and live longer with chemo than without”. I finally asked him to quantity that statement. What does “live longer” mean? Are we talking 4-5 years longer? Before I could finish my breath he replied that he wasn’t talking in years. So I asked him, what it was. He replied median was 3 months. What was the max if the median is 3 months? No answer really because it wasn’t what I was looking for, which again is a long term solution. Needless to say we got the point. Carmen then ventured to inquire about another alternative treatment called High pH Cesium Chloride therapy. He looked at us and said “where are you guys getting this stuff from? There are many people out there on the Internet that will gladly take money from you and promise you the world. I wish big foot was real, but he’s not.” I know he meant well, but the approach was disagreeable at best. The reality is there is evidence out there to the contrary. Not just from what’s on the Internet. I actually talked to a few of these “lost cases”, all stage 4 former cancer patients. 2 of them actually sent me their medical records, one of which was from the Mayo clinic. It wasn’t hearsay, but it was actual phone conversations and correspondence via email. Did this mean Carmen’s case was a slam dunk with Protocel? Of course not. We were a long way from that. What it did mean was that there was hope. There is always hope.
The 2 weeks after this meeting were ok for Carmen. She did have problems but they were manageable. She wasn’t on any prescription pain medication and seemed to have stabilized, hence my limbo comment from an earlier post. I’m always looking for that point where the slope changes from negative to positive. We weren’t there yet. Also we’re not so jaded that we’ve closed the books on conventional treatments. Whatever works and whatever tools we need to utilize to keep this under control and eliminated were on the table. There is only 1 goal.