Chemo happened yesterday. I thought I would be pleased to get this underway, but mostly, I feel bummed out.
The folks at MGH are really really nice, and I feel very cared for. It amazes me how "normal" many cancer patients look. If they weren't waiting for a doctor or hooked up to an IV, I would never know that most of them are patients. Of course, there are always patients who arrive in wheelchairs or on stretchers, and I say a little prayer for them, and give heartfelt thanks that I am not in that position.
Your prayers were again so effective: The doctors decided on a chemo and we all felt the plan was reasonable. Thank you for your prayers for that. That conversation was less stressful than I expected! Sometimes they provide info and we need to make the decision on the spot: It is really hard to make those kinds of decisions in the moment, and having them think it through in advance makes it much easier.
This chemo regimen is different than my last. Thankfully, because that last one didn't do the trick! This one is called FOLFORI (pronounced Fol-fury) and typically the first-line drug used in Europe. I kind of like that. They added one other drug to the mix, but I've pushed that name out of my brain, trying to pretend that I am a normal person and not really taking chemo.
They are still waiting for some genetic testing results on my tumor, and once those return, we will add another drug to the regimen. So I guess I started out with "chem lite."
Marilyn, Tiron and I headed to the infusion unit, where I got hooked up to an IV pole and the stuff drips into my veins over about two hours. It is freaky that so many people there remembered me. And I got my old nurse! I was thrilled with that.
This process involves alot of waiting, and the waiting is really hard for me. I feel like, if my time is limited, I don't want to spend it waiting for nothing. But, wait you do. My doctor took two hours before she got around to writing the chemo prescription. Next time, I'll ask her to do it while I am in her office. I forgot that little trick.
We got seats with a fantastic view of Boston, and were apparently the envy of some other patients. One guy complained to his nurse that he didn't have a better seat. Strange to have envy enter that kind of situation, but human nature is everywhere. Or, as my friend the hospice nurse says, "The closer people get to death, the more of their true selves come out."
The chemo was hard on my body, so they had to give me other drugs to counteract that. I watched half of Julie and Julia, which was nice and relaxing and soothing in a weird way. And then it was all done.
I got hooked up to my continuous infusion pump to wear home. This enables me to go home and keep getting chemo while I go about my day. If you see me on some Wednesdays and Thursday mornings, you will see me carrying a bag and perhaps you will hear the whirring of the pump. I try to remain grateful for this invention that lets me go home, rather than spend two days in the hospital, but I have to say, I truly resent it. It gets removed on Thursday, I get a shot on Friday to bump up my white cell count, and the cycle starts again in two weeks.
How many sessions? The bummer is that, this is for the foreseeable future. So, I can't do a count down. The doctor said that the chemo would need to get rid of ALL the cancer cells. She also said it is unlikely to do that. I think of it like killing cockroaches: It just takes one to get that whole colony up and running again. I try to view this like I have a chronic condition, but my head isn't quite there yet.
The good news is, they are willing to run these treatments around the rest of my life. So I can skip sessions to travel, for example, which I couldn't do before.
I'm excited about this, because I think that will help the quality of our family life. I'm also really excited because I want to go to the Hippocrates Health Institute in Florida, and this will enable me to take time off to do that.
The kids have been fantastic. Not that they haven't been scared or worried, but they are really rallying when we need them to. and Tiron is keeping all my medical records straight, when all I want to do is toss them in the trash.
Please keep your prayers coming! I will take any prayers, but someone advised me to be specific, so here it is:
That the chemo kills the cancer cells and is tolerable.
That the boys (including Tiron) grow in inner strength and cheer.
Much love to all of you.