A Change of Plans

I'm going to cut to the chase. I found out three days before Christmas that I have to do chemo again. It really took the wind out of our sails. That's basically all we knew until today. So, we waited to say anything until we knew more and, thankfully, had some holiday distractions. For some reason it got me almost worse than when I was first diagnosed. It's been a rough couple of weeks emotionally but with some fun family time peppered in. A lot of things I think I had been trying to shove down and away behind my tough-ish exterior came to the surface. Anger, frustration, sadness, fear. BUT, two weeks later, there's a plan in place, I've got my big girl pants on and I'm ready (well, as ready as I can be) to do what I need to do. Or let be done what needs to be done. 

In short, I have to do four rounds of chemo, every other week starting next Thursday. Everything else is on hold until that's done. So, here's what's going on and why. 

The day after my last post I met with my oncology surgeon, Dr. Benitez, (who in my previous post-surgery blog said she wanted to make sure radiation was the next step, etc.). She took my "case" before the Tumor Board on Friday, Dec. 16 -- a group of 25 oncologists of all kinds (radiation, surgical, medical) who review cases that may not be black and white. This board decided that I needed more chemo and she let me know when I saw her on Dec. 22, although it's up to my medical oncologist Dr. Balaraman (who I saw today) to explain it and administer it all. 

Basically, the assumption is always that microscopic cancer cells have gotten out into the body despite not showing up on scans and tests on the macroscopic level. The fact that there were even a few isolated cancer cells in one lymph node also leads them to believe there were more at some point and that chemo killed some of them (but perhaps some got away). Also, because my cancer is/was (not sure how to phrase it anymore post-surgery) inflammatory, it was to the skin. While the pathology showed the margins were clear -- it was no longer all the way to the skin -- it was still at the layer of the lymphatic system just under the skin, which runs alongside the bloodlines and works in a similar way and very close to it. (I think I'm reiterating this correctly. It was a lot of information).

For this reason they are both concerned that A) my previous regimen of four drugs (2 chemo and 2 anti-HER2 antibody drugs), which is believed to be the best four drugs for my scenario, was not as effective as they would have liked; and B) if any of the cancer cells did get out, with it not being super effective it may not have killed them. 

SO, I now have to have 2 other chemo drugs I haven't had. I'll take them by themselves without the HER2 drugs (including the one I've still been taking every 3 weeks, Herceptin -- that's on hold). Because I'm taking 2 drugs and not the 4 like last time, she's hoping I will therefore have fewer side effects, but that's not a guarantee. I will lose my hair again (my precious one-inch!) and can expect the fatigue, nausea, low white blood count, etc. that I had before but hopefully not as intensely. Especially considering it's every other week instead of every three weeks. 

Once I get through that, I'll either go back to the Herceptin or will be switching to another one she's trying to get me approved for (it's usually only for people who are Stage 4) since the assumption also is that the Herceptin was not particularly effective. 

We discussed many more things re: the future plan post chemo, but that's what's happening now. Monday morning I'll get a PET scan to (hopefully) confirm that there is still no macroscopic evidence of cancer anywhere in my body. I'll also meet with my radiation oncologist, Dr. Dilworth, tomorrow (Thursday), to discuss this new info/regimen and get his take on if radiation is still the next plan, but I can't see why that would have changed. I think she is just wanting to make sure everyone's in the loop and that includes a convo with him. I'm in touch with my naturopath so I can get back on things that support me best during chemo as well. 

My wish to have all this tied up in 2017 is likely not going to happen. I probably won't start radiation until late March and therefore won't be able to have surgery until the end of the year at best. Obviously, this has taught me, yet again, there's no such thing as a true plan. It can change at any moment.

It scares me to have such a weakened immune system during this time of the year with everyone sick, but I'll just have to be really diligent and, maybe, a bit of a hermit. I've remained careful these last several weeks as it is, but now I'm really going to have to be on guard again. At least it's the perfect time of year to be a hermit. 

My appetite is finally back a bit this week in that vegetables, etc. are finally sounding good and I'm tolerating most foods that I haven't been able to eat since the Cdiff struck. My appetite isn't where it was pre-chemo, but I'm going to eat as much as possible in the next week before it starts again. I haven't gained much of my weight back so we'll see what I can accomplish in a week. I have to believe eight weeks of chemo will be a lot easier to get through than the 19 weeks before. Fingers crossed without so many of the side effects, hospitalizations, etc. My regular heart check was already scheduled for next week, so that's good timing. I suppose maybe we should restart MealTrain again, but we haven't talked about that yet. We've been keeping it pretty simple around here for dinner and are still utilizing gift cards we've received so thanks again for all of those. In fact, Daniel's got a bad cold and was working tonight, so I picked the girls up and we had a great dinner at Inn Season Cafe, thanks to gift cards. 

I hope everyone had the happiest of holidays. Here's to more daylight each day and spring being here before we know it.