Friday, June 18, 2010

We're all familiar with the little elephant, Dumbo, and his big ears, right? And do you remember how Timothy, the mouse, gave Dumbo a "magic feather" to give Dumbo the confidence to fly? And Dumbo flew. Then at the worst possible moment Dumbo lost his "magic feather" and with it lost his belief that he could fly. Of course, in the nick of time, Timothy explains to Dumbo that the feather was never magic and that he can fly without it and, of course, Dumbo finds his confidence in himself and flies without the feather.

I think in all of our lives we occasionally have our own personal "Dumbo feathers" that we cling to to give us courage or confidence or reassurance. And, like Dumbo, when we lose those "magic feathers" we can lose our courage or confidence or assurance. Of course, in the end, it often turns out for us much as it did for Dumbo and we realize that we never really needed our "magic Dumbo feathers", or maybe that we did need them at one point but now no longer do. But that doesn't mean that we don't have our moments of panic when we find our "feathers" gone. It doesn't mean that we don't sometimes long to have our "magic feather" back. And it doesn't mean that we don't sometimes go through periods of uncertainty, indecision, and fear without that "magic feather". But ultimately, in the end, I think we all find ways to fly without our "Dumbo feathers", or at least I hope so.

Today I partly lost and partly gave up the most unlikely of "Dumbo feathers", that being my chemotherapy. I met with my doctor up at Mayo Clinic and he went over the results of all my latest tests with me. As of yesterday, my liver is still full of holes but also still clear of tumors. My blood work all looks good. And the tumors in my lungs haven't grown at all. All fabulous news. Then my doctor started talking about my chemo. I've been on this latest chemo since last October and he said that normally the most benefit you're going to get out of most chemo regimens is seen in the first six months. We're on month eight now with my chemo and my tumors are stable but my side effects from the chemo are sort of sucky. Given all those facts and, of course, all sorts of doctor knowledge that I don't have, my doctor suggested a "chemo break". That meaning we would stop my chemotherapy and closely monitor my condition. My doctor's reasoning is that we have probably gotten most of the benefit that we could out of the chemo and that continued use is likely not having any really significant effect on my cancer but it is having a significant effect on how crappy I feel. He also said that he does not believe that stopping this chemotherapy is going to have any effect on my lifespan even if (and it sounded like a pretty significant "if") it had an effect on how quickly I have a recurrence/tumors start growing. That bit is a little harder to explain, but it did make sense. If my tumors start growing in a month or two of being off the chemo my doctors said that it is likely they would have started growing regardless of the chemo. But on the flip side, there is good possibility here that I could go for a good stretch without any recurrence or tumor growth and that could all be time without chemo side effects. And if things start to change and tumors start to grow my doctor still has options for me, more than a few, so it wouldn't be "end game"... at least, theoretically.

But ultimately the choice was left up to me. My doctor would continue the chemo if I said so or he would cancel it if I said so. It wasn't an easy decision and I'm still not sure I made the right one, but today I gave up my "Dumbo feather" and stopped my chemotherapy. I traded in my "magic feather" for hope and trust. Hope that this was the right choice, hope that I can, indeed, fly without it. And trust in my doctor who has never yet steered me wrong. And, of course, that's not to say that I didn't need the chemotherapy to begin with, just that continuing it might be like clinging to a "magic feather".

It is a strange place to be though. Am I in remission? No, not really, I still have a bunch or tumors. It's more like we have scared the enemy into hiding and are now we are hoping that we scared them enough to "keep their heads down" for a long long time but we are also watching and waiting for them to show signs of what their next move will be. And it's a tougher place to be in than I thought it would be. I feel like I should be doing something to actively fight this. I'd rather be active than reactive, but still the plan makes sense.

Waiting is scary, especially without my "Dumbo feather", but even on the rainiest day (and this day is really rainy both emotionally and literally) there is the hope and trust that I will find that I no longer need my "Dumbo feather" and that I can, indeed, fly.

Friday, June 11, 2010

A bit of an update

So, once again, I know it's been quite awhile since I've posted anything. Sorry about that. In any case, I thought I just give you all a quick update on how I have been and am doing.

About 6 months or so back my chemo got changed from being the oral Xeloda to a combination of the IV chemo drugs Gemzar and Cisplatin. The frequency and amount of chemo that I have been receiving has fluctuated a good deal over the past months due to low blood counts but it seems we have finally settled into a schedule that my blood counts seem to be tolerating. I am currently receiving chemo once every three weeks. The chemo isn't horrible, it really could be much worse, but it's no spa treatment either, that's for sure.

The last time I was up at Mayo, about 6 weeks ago, my scans looked pretty good. "Pretty good" meaning they showed that my liver is still free of tumors right now, full of holes but still tumor free, and that the tumors in my lungs have not grown at all. And I would agree with the doctor, that is indeed pretty good! So no changes were made to my treatment plan.

Now I am heading back up to Mayo next week for scans on Thursday and meeting with my doctor on Friday followed by chemo if all goes according to plan. I am, however, a bit nervous that things this time may not look quite as good as they have been looking. A few weeks ago I got a bad sore throat followed by the loss of my voice for a few days and then that was followed by a deep chest cough. Over the next week or so the chest cough improved but then turned into this weird sort of lighter more gaspy (is that a word?) cough... and that cough hasn't gone away or gotten any better. And I have also started to have some upper back pain behind my lungs. So, I'm a bit worried about this doctor's visit. It could be nothing, and I really hope that it is, but it could also be the start of bad things to come. And the not knowing can drive you absolutely batty.

I think it has got to be one of the worst things about cancer, not knowing if what could very likely be a "normal" ache or pain is indeed normal or may be a signal of something bad and cancer related. It makes you feel like a hypochondriac or a crazy person. I have actually laid awake some nights (yes, more than one) trying to "assess" my various pains and it makes me laugh to look back on it because I was thinking things like, "Now, does this feel like a liver tumor?" Like I would really be able to tell. Heck, I had tumors the size of a lemon before I was diagnosed and only had occasional pain and nothing that screamed liver tumor at me. And really, who sits there thinking, "Ah yes, this pain feels very liver tumor-like, I really need to call my doctor now"? So, you see, you can drive yourself crazy wondering and worrying, but then, on the other hand, if you just write every ache and pain off as being a "normal" one then you can land yourself in a whole heap of trouble by missing early signs of something that could turn bad quick. I guess the trick is finding a happy medium... I, personally, haven't found it yet.

So that's where I am right now. Headed back up to get everything checked soon and worrying about it all in the mean time. But even on the rainiest day there is the knowledge that the rain will eventually stop, the waters will recede, the damage can be assessed, and work to repair any problems can begin.