Sunday, October 28, 2012

Twenty Weeks Post-Chemo

I've received messages from people currently under treatment for similar diagnoses as mine, so I thought I'd provide an update twenty weeks out from my last FOLFOX chemotherapy treatment.
  • FOL– Folinic acid (leucovorin)
  • F – Fluorouracil (5-FU)
  • OX – Oxaliplatin (Eloxatin)
Side note: Oxaliplatin was removed from my prescription for treatments 11 & 12, due to the continued neuropathy.

The fatigue is still significant. If I try to go without at least eight hours of sleep, there's no chance I'll make it through my day without being exhausted. If I do get eight of sleep, I still even then feel exhausted by the end of the day. In any given moment I may have lots of energy, feeling and appearing to be fine, but it feels like I still have a long way to go.

The neuropathy in my hands & feet is still quite significant. I feel very little in my finger tips and the skin feels very tight and tingles to the touch. The soles of my feet feel numb and tingle all the time. When I walk or stand, my feet feel like I standing on round rocks covered with cotton balls. To walk and stand, feels very strange.

Also, my alkaline phosphate count is still higher than normal. This would go up whenever I received Floxuridine (the liver pump chemo). However, I am not experiencing side-effects from the count being higher. I'm just being kind to my liver as it heals.

On a personal note, I no longer feel like the person I was two years ago. The person I see in the mirror looks strange at times. And when I'm in a lot of emotional pain, as I am from time to time, it truly feels like I am dreaming. I have to remind myself that people will not stop behaving in ways that occur to me as selfish or unkind, simply because of my circumstances. People's humanness continues. We are all still managing our lives, to the best of our ability, whether it actually works or not.

So, my life looks very little like it did two years ago. Completely rebuilding my life while also undergoing a huge surgery, then seven months of chemotherapy, has had a powerful impact on me. I am definitely far more passionate than I have ever been, yet I no longer have much tolerance for people's angry outbursts. And that has a lot to do with how I still feel quite "raw" from the last two years. My nerves still feel exposed. People yelling and/or  being unkind when they are angry used to be something I tolerated. Something I considered acceptable if within reason. Not anymore. Of course I still get upset now and again. I don't raise my voice much. If necessary, I prefer to just end a dialogue at this point. Selfish...maybe. But with the possibility of limited physical existence, self-preservation, emotionally & physically, is a higher priority to me than it's ever been. I do my best to be good. Maybe not always nice, but good.

And now I'm a single father, two time cancer survivor, scraping along financially, with a high probability of recurrence. I actually feel quite 'single' after that mouthful. I once told a buddy, when I was in the thick of it all, I should start a dating site for people whose lives are train wrecks. But the criteria would have to be "as bad as Bert's life or worse." Can you imagine some of those profiles?!?!?! Ha-ha-ha! We laughed hard playing off of that one for a while. Fortunately some of the wreckage in my life has been tidied up a bit. At least the cancer appears to be gone. And in all honesty, my prayers are with anyone who is in a terrible situation. I laugh at my situation. No one elses.

Plus, I love plenty about my life. It's just some of the circumstances I prefer to do without. But don't we all.

On that note, people will sometimes try to play down the reality of my situation and say, "Anyone could get hit by a bus and die tomorrow." But a wonderful friend of mine with a hell of a cancer diagnosis responded to that by saying, "True we can all get hit by a bus tomorrow and die, but the buses in my neighborhood drive really fast and there's LOTS of 'em!" I thought that was an hysterical analogy. Great image, too!

On a good note, I love the kids more than ever, my music provides me endless joy, I'm learning many new things, and my friends are more dear to me than ever. A lot of other things are much different than they were a couple of years ago. And some things very much remain the same.

Sunday, October 21, 2012

Perhaps a Litttle Procrastination

On Thursday I had a CT scan of the abdomen in order to determine the source of an issue I've been having with my large intestine. My doctor found that my intestine kind of folds just before it exits my abdomen, which keeps things from moving as well as one would like. The options to correct it are
1) have surgery on the surface of my abdomen to straighten out the intestine (either outpatient surgery or an overnight stay)
2) have my abdominal cavity opened up and straighten things out from the inside (five hour surgery)
3) to do nothing and deal with it.

Opening my abdominal cavity, is definitely out of the question. I've had my abdomen opened enough for one life time - perhaps two. And not dealing with it doesn't work for me. So, I sit here thinking to myself, "I should think about this for a while," as if thinking about it for a while is actually going to change anything. Maybe I just feel better not rushing into it, which seems so silly but at the same time, it works for me right now.

Saturday, October 20, 2012

Moving Forward

Last week I had a colonoscopy and it was clear. I kind of expected it to be clear since I've received regular scans for quite a while now. Yet it was still nice to hear. I honestly don't know how long it will be before I am excited about being told I'm in the clear. As I've said before, my confidence was rattled when I was diagnosed with this recurrence. And my emotional state over the many months is still not something I recognize as familiar.

Over the last few months I've been up & down, going from being really blue about my health and having to rebuild my life, to feeling good and creating the life I want to live. The blues seem to be less frequent, but they still hit me pretty hard when they come. Honestly, I thought I'd be in a better space by now, but I'm not and I guess that's okay. I still have a lot of fun doing the things I love. I guess it just takes more for me to get motivated lately. It's obviously not a permanent outlook, and for that reason, I look forward to feeling more and more myself as time goes on.

Another part of it has to do with my doctors and nurses having told me, now that I've had a Stage IV diagnosis, a recurrence sometime in the future is highly probable. Of course I like to focus on the possibility of my being in the healthy, cancer-free side of that probability. Somebody's gotta be. And yet I am not going to pretend I don't "look over my shoulder" and wonder what's coming down the pike. I definitely do. I am still quite rattled from the recurrence not to mention all that preceded it. I really want to be past it all, which I suppose is a good sign. And perhaps I've forgotten how hard it all was. And maybe the impact is more than I anticipated.

So, I look around this apartment which we've been in since May 15th and continue to try to think of it as home. It is "home" in the sense that it's where I return for sanctuary from "the rest of the world," but something is missing. Cuddling with my boy on the couch and watching a movie this evening made the place feel a bit like home. Perhaps once the snow sets in, we'll feel like we're in our little den. I've also been thinking about having a house warming party. It didn't interest me upon moving in since I was receiving chemotherapy and waiting for the scan results. Perhaps it's time.