I got some clarification on Steve's situation. He did not have surgery last week--that was an appointment for an MRI. But, it did confirm the size and location of his new tumor, and from that he's scheduled for surgery on March 1. They will take some skin and other tissue from from one of his arms (called a free flap) to patch the hole when the tumor is extracted. He'll likely have several weeks of rehab and therapy to get his speech back to some semblance of normal.
So, please keep building up those Good Vibes for him on March 1, and while you're at it, add some for me. On that same day I'm having an outpatient procedure to improve the functionality of my lower lip, so my lips will purse together without having to force it. The current inability keeps me from using a straw (no suction) and makes saliva drip out when I tilt my head down, and forget to close my lips together. Neither are pretty to watch, but there you have it.
If this little procedure is successful, it could mark the end of my surgical needs for good. I will have all of the functionality I can ever expect and can then get on with living with those limitations forever.
As always, the key word is "could." Even though this could be the end of my surgical history, there are never any guarantees for the citizens of Cancer World.
mike
Monday, February 20, 2017
Tuesday, February 14, 2017
Fear and Loathing at Cafe Lily, and Good Vibes needed for Steve Nau
Last Thursday was Terry's birthday and she chose for us to eat at Cafe Lily, one of our favorite restaurants. We requested and got our favorite table, so it started out as a great evening out. Terry ordered the pincintos, a roasted lamb dish served with very tasty Japanese sweet potatoes. After a lot of deliberation I ordered an asparagus risotto, topped with scallops. It seemed to pass all tests for chewability, swallowability, and yumminess (none of which are real words, by the way). Our plates arrived, we toasted to her birthday again, and dug in. About 10 minutes later I felt something being lodged in the lower end of my esophagus, but I dismissed it--things like that happen a lot and almost always work their way down into my stomach with some patience and lots of water.
Key word...almost.
This one stayed stuck and started to irritate my esophagus. It did not block my breathing so that was not a threat. But, it did cause us to cut short our dinner, miss a great chocolate dessert served there, and to head home--with the clock ticking on our one-hour rule to head to the Emergency Room. Right at one hour, we decided to head to the ER, so I went upstairs to change into some comfortable clothes for what could be a long night. As usual, Terry was packing stuff to help her pass the time there. I gave it one last try, and with that whatever it was moved a bit, and then slid down into my stomach. Situation over. I never did see it, but assume it was a piece of scallop that had been stuck.
Although it ended well, if after an hour, this brought back memories of so many other times when we ended up in the ER for the same reason and I had to get some direct medical attention to get it resolved. And, it added to the long list of events that remind me that I'll always be a cancer patient in some form or another. I now take for granted waking up with a scratchy dry tongue every day, and having to think carefully about every bit of food I put in my mouth--just part of the price for being a cancer survivor. bit, every once in a while like the incident at Cafe Lily I get reminded that I can't take any of that for granted and need to be constantly alert to handle situations like those.
Contributing to that fear and loathing, I got a bit of news recently that really scared and saddened me at the same time. As a back story, my oncologist once told me that the chances of patients like me getting a recurrence of the original cancer is "little to none" due to the radiation in that area. I have been mentoring a friend from California for a few years on his own progression through severe ORN symptoms, and he recently learned that he now has a new primary tumor in his original cancer's area. His name is Steve Nau, and says that his oncologist is not calling it a recurrence, but to me that's just semantics, and either way it is caused by Shitty Fucking Luck. And, because he can have no more radiation in that area, his only option now is surgery to remove part of his tongue. That will happen tomorrow (Weds, 2/15), so please give him our best Team Mike Good Vibes for a successful procedure, a quick recovery, and manageable limitations going forward. The reality is that he'll have some loss of function with his tongue and jaw, so the best outcome is that those are negligible compared to his current limitations.
Besides feeling bad for Steve, any recurrence, and especially one is the same area, is my own worst nightmare after 8 years in Cancer World. I am not sure I could handle the physical and emotional stress of another round of treatments, side effects, and further deterioration is quality of life--for me and for Terry. It took every ounce of fight for us to make it through one, long round. To have to gear up for another battle would cause me to think hard between that and a full surrender. I hope I never have to make that choice.
But for now, my attention and thoughts are with Steve.
mike
Key word...almost.
This one stayed stuck and started to irritate my esophagus. It did not block my breathing so that was not a threat. But, it did cause us to cut short our dinner, miss a great chocolate dessert served there, and to head home--with the clock ticking on our one-hour rule to head to the Emergency Room. Right at one hour, we decided to head to the ER, so I went upstairs to change into some comfortable clothes for what could be a long night. As usual, Terry was packing stuff to help her pass the time there. I gave it one last try, and with that whatever it was moved a bit, and then slid down into my stomach. Situation over. I never did see it, but assume it was a piece of scallop that had been stuck.
Although it ended well, if after an hour, this brought back memories of so many other times when we ended up in the ER for the same reason and I had to get some direct medical attention to get it resolved. And, it added to the long list of events that remind me that I'll always be a cancer patient in some form or another. I now take for granted waking up with a scratchy dry tongue every day, and having to think carefully about every bit of food I put in my mouth--just part of the price for being a cancer survivor. bit, every once in a while like the incident at Cafe Lily I get reminded that I can't take any of that for granted and need to be constantly alert to handle situations like those.
Contributing to that fear and loathing, I got a bit of news recently that really scared and saddened me at the same time. As a back story, my oncologist once told me that the chances of patients like me getting a recurrence of the original cancer is "little to none" due to the radiation in that area. I have been mentoring a friend from California for a few years on his own progression through severe ORN symptoms, and he recently learned that he now has a new primary tumor in his original cancer's area. His name is Steve Nau, and says that his oncologist is not calling it a recurrence, but to me that's just semantics, and either way it is caused by Shitty Fucking Luck. And, because he can have no more radiation in that area, his only option now is surgery to remove part of his tongue. That will happen tomorrow (Weds, 2/15), so please give him our best Team Mike Good Vibes for a successful procedure, a quick recovery, and manageable limitations going forward. The reality is that he'll have some loss of function with his tongue and jaw, so the best outcome is that those are negligible compared to his current limitations.
Besides feeling bad for Steve, any recurrence, and especially one is the same area, is my own worst nightmare after 8 years in Cancer World. I am not sure I could handle the physical and emotional stress of another round of treatments, side effects, and further deterioration is quality of life--for me and for Terry. It took every ounce of fight for us to make it through one, long round. To have to gear up for another battle would cause me to think hard between that and a full surrender. I hope I never have to make that choice.
But for now, my attention and thoughts are with Steve.
mike
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