Not A Good Day

I think that it's fair to say that yesterday was one of my worst days yet on this whole journey.

I went in the morning to be disconnected from the chemo pump, expecting that the appointment would take about 10-15 minutes and then I would be "free." But, unfortunately, as my nurse was disconnecting me, she noticed that the incision from my port-a-cath surgery had opened AGAIN! It was just a small opening, but enough that she could see the white catheter clearly through a small hole in the skin. And obviously if there is a hole in the skin, there is a huge risk of infection (which is the last thing that I need, given that my white blood count is so low.) As soon as she mentioned it, though, I knew exactly what was coming next....I was going to be sent back to the hospital for another surgery to re-close the wound and sure enough, this is exactly what happened. I found myself laying on a hospital gurney a couple hours later while the radiologist re-sutured my incision back together while my poor mom sat in the reception room anxiously waiting for me to resurface. She and my dad have been such a Godsend to me through all these months -- they are both so willing to drop everything on a moment's notice to take care of me. And I have to say that it was really, really nice to have my mom there to give me a big hug and take me home to tuck me into bed after the surgery was over.

During the procedure, I asked the radiologist how this could have happened again, but his answer was simply "I don't know." The reality is that chemo works by targeting and destroying fast-dividing cells (which cancer cells happen to be.) Unfortunately, any area of the body that is also trying to heal contains lots of fast-dividing cells. And each time that the doctors have tried to close my port incision, I have been on chemo and so I am sure that my body is just having a hard time trying to figure out what exactly it's suppose to do. Is it suppose to heal? Or are those cells suppose to die? What the heck is going on?

To make matters even worse, I feel soooo darn crummy. The new nausea drugs are helping tremendously, but the neuropathy side-effect is really, really bad this time. My hands are so stiff and tingly that I am having a hard time doing simple things like pulling a band-aid off for Luke or opening a jar of food. And it's not just my hands; I feel a really weird pressure in my head and in my chest and it scares me!! I mentioned the symptoms to my doctor a couple days ago and he is definitely concerned. The nurse told me that, when I meet with Dr Gullion next week for my check-in appointment, he will evaluate me and decide whether it makes sense to take me off FOLFOX and try a different chemo drug instead. She said that they have a "huge amount of respect for the chemo drugs in FOLFOX" and that they don't want to cause any long-term damage to my body, which I totally appreciate.

Given what the nurse said, I called Jeremy and Shannon last night to talk with them and get their perspective as well. While we were talking, Jeremy did a quick search through some online medical studies to see if he could find any info about long-term, permanent effects of FOLFOX and there was one study that showed 5 out of 30 patients suffered long-term effects. Five out of thirty -- holy crap!! When I mentioned this to Pete later, though, he pointed out that I need to balance this percentage (which, by the way, is 16.67%) against the number of patients who don't do FOLFOX and who have a recurrence of cancer, because that is the real trade-off. FOLFOX has been proven to be extremely effective against colon cancer; it is one of the major advances that has been made in the past 5 years. It's one of the reasons that colon cancer can now be "cured" for some people. And so I feel like I need to take a complete gamble: do I stay on the FOLFOX and risk being one of the 16.67% who suffer long-term effects or do I switch to another drug and risk being one of the cancer patients for whom the cancer comes back?

Pete's right. I know that he is right. And I know that Jeremy and Shannon feel the same way; they both were very direct and blunt in saying that they would "highly recommend that I stay on the FOLFOX," but it's soooo darn hard to think about feeling this way for the next 13+ weeks. It's so scary to think that the side-effects that I am having right now might last forever or that I might be doing permanent damage to my kidneys or liver or something else. It's so hard in the midst of chemo for me to keep my head on straight because I want so badly to be done with this and have it all over. In some ways, it's almost harder that I was re-staged as "either stage 2 or early stage 3." If I were stage 4, there would be no question in my mind that I needed to do the most aggressive chemo possible; the alternative is pretty cut-and-dry. But at "stage 2.5" (as I have come to think of myself) it's so much easier for my mind to search desperately for an easier path. I have already done two sessions...maybe that's enough...Do I really NEED all eight? My pathology report showed "well-differentiated cells"...doesn't that mean that we can drop smaller bombs and still kill the cells? What if I go in every 3 weeks rather than every 2...would it still work?

Ohhh, this is all so hard!! This is the hardest thing I have ever done in my life!!