Hello!
I have been MIA. My apologies. It’s been all about one foot in front of the other these days so things that require extra effort just aren’t happening.
I should do a longer in depth post but that energy thing is keeping me from doing so. If you dislike long posts then this one will please you!
After 12 days in the hospital I got out and followed up with both my surgeon and my MDA oncologist, Dr. Javle. The path report from surgery was a bummer for us as it revealed two things that weren’t expected. One was that the tumor my surgeon removed was bifocal which means there were 2 other cancerous tumors hiding behind the one we already knew about. He took them all out. The second piece of unwanted news was that when inspecting these tumors there appeared to me microscopic vascular invasion which means stray cancer cells my be going into my lymph system again. We don’t know this for sure. This is enough of a concern that my MDA doctor wants me to go back on chemo.
I feared he would recommend this and I have struggled, truly struggled with what to do. I do have other more integrative people I discuss these things with and without going into it now, there are some other options that seem way more appealing to me. The issue is I would need to get these other options put into play within the next two weeks and I don’t think I can pull that off.
So my MDA oncologist has recommended 8 rounds (4 months) of modified FOLFOX
oxaliplatin 85 mg/ over 2 hours on day 1
5-Fluorouracil 2400 mg continuous infusion over 46 hours starting on day 1
I have a week on then a week off, repeat.
This would be a new drug treatment for me and a new infusion schedule. I have not had the good fortune until now to go home with a “fanny pack” of medicine that slowly drips into my body for 2 full days. I want to do this as much as I want to drive nails through my finger tips with a hammer. I simply believe my body and immune system are not real happy with this type of treatment, whatever particular drugs they are. So I have committed to the first round which starts tomorrow. Everything past that is on a let me decide when I get there basis. I will not do 8 rounds. I think that’s too many. Four seems reasonable, unless that’s too many. In the meantime I will be plotting my other plans for treatment which do not involve chemo but could include some off label drugs. More on this as it evolves.
Before chemo tomorrow morning I will get up at 5:00 am and go to see Dr. Gagneja who put a temporary stent in my bile duct when I was in the hospital in Austin. He did this so all that bile that was swirling around my liver could drain out. Tomorrow morning at 6:30 I will get the stent out which is a much easier process then it was to get put in. It’s in his office and out patient and I will be under the influence of the “Micheal Jackson” drug. It will be similar to an endoscopy and non-invasive (no slicing me open).
So stent removal and chemo is what is on my Monday morning schedule. I’ve been tired, depressed, pissed off and generally not in a good place. I am clawing my way out a little each day. Charles too has been in the depths so if you are reading this and you are one of his close peeps, he could use some people to drag him towards the light.
I will get to where I want to be, cancer free. The path has so many damn thorny branches that it’s hard to see past them to the blazing light. I have Faith it’s there even if I can’t see it right now.
Nite nite,
Sweet dreams,
xoxo
Hilary