Monday, February 22, 2016

Don't burn the day, away

Another Monday in the chemo chair. Session number two for round number two. I'm feeling the energy being sapped from me as every drop drips from the two plastic bags hanging above my head. It is hard to explain how it feels as there is no particular physical sensation in which to refer. A general physical malaise that starts slowly and then overtakes until I feel completely off-kilter within my own body. No pain, and rarely nausea these rounds. Just a broad sense that something isn't right. And of course it isn't... I'm being actively poisoned. The whole idea of chemotherapy is a little ridiculous. But it is working, and it is the best tool we have to use, and it's a hell of a lot better than it used to be.

So for one day every other week I will sit here without much complaint. I tend to complain more about that stupid pump and the additional 46 hours of constant 5FU chemo (yeah, Fuck U too chemo). Though I do try to keep the griping to minimal levels. After all, it is only three days out of every 14 that I am going through this and really off my game. That's a split of 21% and 79%. In my mind I am rounding that up to 80% of my time is mine and the good days. Because I choose to make them good days. I was driving around in our beautiful momentary spring-like weather this last week and listening to some old Dave Matthews cds. Sometimes a song leaps out at you that you never really noticed before. And so it was with Pig (see video below) during that sunny afternoon.

Some of what captured me:
"Is this not enough, This blessed sip of life. Is it not enough, Staring down at the ground. Oh then complain and pray more from above. Greedy little pig."

"Wash out this tired notion, That the best is yet to come."

"There are bad times, But that's ok, Just look for love in it."

And of course my title for this post, "don't burn the day away."

This writing, even in the middle of the hardest day of it, is my way of positively appropriating the day. Not letting it just entirely burn away. Reclaiming some piece and making it my own. Reaching out virtually to the people I love and taking that in to carry me through the more difficult times. And a reminder to all of you of the impact you make upon me. "We need the light of love in here." I'll make a bargain to shine my love light if you shine back.

I know this can kind of sound like all those corny cliched lines from countless motivational memes. But there can be truth in them, and I honestly believe attitude comes down to choice. I've been complimented many times for being "strong" and "heroic" and it is often a difficult compliment to accept. I don't see myself as being strong; I see myself as taking the only valid road and attitude that suits me. However, I have come to understand that the sunny side of the street is not the only side to choose from and it takes some wherewithal to keep walking. I see the wear and the struggle, and sometimes the defeat, in the patients around me every time I come to the cancer center. All of these people going through their own journey or battle, fighting to keep themselves when so much is taken away. This is a hard thing and can completely overwhelm you. I've had many of those days myself. And it was hard to crawl up away from the easy slide down into depression and apathy. Somehow, through natural neurological wiring and choice, I've found that shadows and cages simply don't suit me.

And so, now that they've unhooked me and attached my best friend for the next couple of days, I'm flying this coop and looking forward to settling in to my home nest for the rest of the day and evening. Adios for now, and don't forget to check out this fabulous song.

Pig, by Dave Matthews Band from Before These Crowded Streets

Wednesday, February 10, 2016

Three tomatoes are walking down the street...

Time to do a little catching up.

I had my 12th PET scan last week Monday. Alas and alack all over again... no new superpowers. But the results from the scan were very positive. The two metastasized lung tumors showed positive reaction to the first round of chemotherapy. The left tumor shrank and had reduced uptake of over 50%, almost putting it in a normalized range of metabolic activity. Which means it's almost not worth worrying over. The tumor in my right lung had shrinkage of about 40%, though it is still worth worrying over. But as the FOLFIRI cocktail seems to be doing its job and my bloodwork this Monday was all in positive ranges, we started a fresh 6-session round again this week. I only have a couple more hours before I get the 5-FU pump taken off and that will be the finish of session one.

My medical oncologist was very upbeat in our meeting on Monday. The updated plan for the time being is to (1) do this second round of chemo, (2) have another PET scan and, if the results are similarly positive, then we can (3) do a round of radiation on the lung tumors. The advantage of moving to radiation is that we can then take a break from any treatment for a few months. If we follow this plan and I am reading my calendar correctly, then that means that I should be treatment free by early June. And *that* means I'll be able to truly enjoy the summer - a wedding, couple of camping trips, 50-Year, the beach for a week maybe, Pennsic, possibly abroad to Greece in the late summer. And I am stoked about all the potential of a great summer and fall.

To clarify, and ground everyone a bit, remember that we are not looking at a cure for me. We are controlling the cancer as best we can to give me the best quality of life for as long as possible. And there is still the unknown about how the brain tumors are doing. The radiation we did back in October did cause some shrinkage (and one seems entirely gone), but we won't get an eye in on their progress until my next MRI scan in March.

I, of course, remain persistently hopeful and work hard at staying positive. Optimism may have bitten me in the ass a time, or five, but it's still my favored mindset. There's always so much more new to see and do and converse about; my curiosity continues to drive me relentlessly forward. I may not have gotten the sudden ability to fly, but my soul is a wild, uncaged bird. And, yes, there are bad days. I just choose to keep my focus on the good ones.

I am open to conversations about all of this. I expect I will see many of you in the next few weeks at Val Day, or Gulf War, or personal visits. *This* is my favorite part of the days to come - seeing all my wonderful, loving peeps and basking in the joy of you.