But just in case the pizza and beer after the doc last time was good luck, we did it again this time.
Friday, June 22, 2012
4/11/12 - Here we go again
In early January, we were super stoked that after 3 years of clean scans, John as able to go off his cancer drugs. He was running and working out and eating well and happy and healthier than ever. A couple weeks ago, he started having some pain and a drop in energy level. He went to the doc who diagnosed it as gas and said to come back in 2 weeks if it persisted. Persist, it did, and John went back the next week and they sent him for an x-ray and scan. That showed a couple spots that concerned that docs so he had a PET scan on Monday. We went in today to get the results. 3 tumors have shown up. They are smaller than the last one, but considering how quickly they showed up after he went off medication, the growth is quite amazing. Our surgery doc was dumbfounded. He brought up the scan from Dec. 30 and said he had been through it looking for anything they could have missed. There was just nothing there. So, we will be resuming the Tommy the Tumor blog next week as we march through this battle. We are lucky that we found it fast, lucky JJ is in so much better shape this time, lucky that we have a supportive workplace, lucky to have docs we trust, lucky to have good friends, and lucky that we have a solid relationship. We got this.
But just in case the pizza and beer after the doc last time was good luck, we did it again this time.
But just in case the pizza and beer after the doc last time was good luck, we did it again this time.
4/12/12 - As Scary as it looks
4/13/12 - Battle Face
4/15/12 - Saturday
I have been doing a photo challenge for the past couple months, so there may be a couple overlaps between that and my posts here. This is what came up for yesterday:
Day 14- how you feel today
well, I feel lots today. I'm happy that John feels good on his last Saturday before surgery, I'm relieved to have our taxes (paid, ugh) done. i feel on top of all of my domestic to-dos for the upcoming week: house is clean, groceries gotten, laundry done. I am glad I had time to sunbathe on the new cement for a bit - where I took this pic. As I post this, I feel that I am grateful for a yard guy that I can have come over with a simple text and glad that the neighborhood kitties we feed (represented today by that fluffy black puff) are getting to the point where being in the yard together is OK. While our impending week is epic and scary, I feel calm and prepared as this battle commences.
Day 14- how you feel today
well, I feel lots today. I'm happy that John feels good on his last Saturday before surgery, I'm relieved to have our taxes (paid, ugh) done. i feel on top of all of my domestic to-dos for the upcoming week: house is clean, groceries gotten, laundry done. I am glad I had time to sunbathe on the new cement for a bit - where I took this pic. As I post this, I feel that I am grateful for a yard guy that I can have come over with a simple text and glad that the neighborhood kitties we feed (represented today by that fluffy black puff) are getting to the point where being in the yard together is OK. While our impending week is epic and scary, I feel calm and prepared as this battle commences.
4/15/12 - Dear Cancer:
You seem to have forgotten who you are messing with. You are not welcome here.
Scram.
SS/JJ
Scram.
SS/JJ
4/17/12 - Operation: Operation - Complete!
Our doctor wanted to have another surgeon join him, so our check in was pushed to 10 am. Just perfect to go grab breakfast and.. no. no foods for John. I tried to stealthily make coffee and eat an egg in the kitchen while he was in the shower.
you totally looked. shoulder punch.
We got to the hospital and John donned his fancy surgery duds. (for a guy who wears five fingers, I guess those shoes aren't that bad :/)
We ended up with the surgery before ours starting late, which meant we would start late and while it's not like we had other plans, sitting there trying not to be nervous and scared isn't exactly easy. We joked as we played Words with Friends with each other on our phones (I'm totally winning) while we were sitting there in surgery prep. We also shared a laugh that the anesthesiologist totally seemed stoned. (no, we don't think he actually was, but it was funny to envision). The good bye was not any easier than last time, but I did inevitably have to leave. Rather than spend the whole day at the hospital, I came home and grabbed a jog, shower, and a coffee and then took to the waiting room with my book. The surgery was a tad shorter than expected (yay!). I will say that the time spent in the consultation room waiting for the doc is just grueling. I sat, I stood, I step-tapped.. and my stomach just fluttered. When our doc came to the door (he's adorable) he held out his hands, said he was sorry to make me go through this again and gave me a giant hug. We are so lucky to have him as our leader on this journey. He drew me this picture of John's guts as we talked.
He removed the three tumors. They had grown since discovery, which aligns with our first experience. John's cancer means business when it is released into the wild of his guts. The good news is that the drug he was on (Gleevec) kept it contained for three years without incident. This only resurfaced when he stopped taking it (under doctor supervision of course. Those with less aggressive forms of GIST have gone off and stayed clear. I don't want to in any way insinuate that this was a doctor screw up or us requesting to go off. This was the original plan.) So the surgery was a success and far less organs were cut this time than last time. What I am hoping is that will mean a shorter amount of time without food and shorter hospital stay. But today was long. The hospital seemed to be really full today (:( sorry for those who had to receive bad news) and everything was delayed. John was supposed to hit his room an hour after surgery, so around 5, and I first saw him at about 7. When I did, he was happy and feeling strong and looking good. Like this:
He is going to be OK. He will continue to work on being healthy and happy and most importantly, we'll be on his drugs forever. I don't think we would be here if he would have stayed on them.
I have to say that I feel so lucky. Cancer is a beast. There are families that hear that there are no options and their plan is for managing the decline of a loved one's life. There are patients who don't trust their doctors or think they are making the wrong decision but due to insurance, can't request a second opinion. There are people who do not have insurance. There are people in the waiting rooms who are told that a patient died during surgery. There are patients who come out of surgery with their lives fundamentally altered because a doctor had to take more than expected. None of these things have happened to us and while this isn't something we envisioned happening in our lives, we HAVE our lives and in a week or so, I'll bring my husband home and we'll get right back on track with living those lives to the fullest.
you totally looked. shoulder punch.
We got to the hospital and John donned his fancy surgery duds. (for a guy who wears five fingers, I guess those shoes aren't that bad :/)
We ended up with the surgery before ours starting late, which meant we would start late and while it's not like we had other plans, sitting there trying not to be nervous and scared isn't exactly easy. We joked as we played Words with Friends with each other on our phones (I'm totally winning) while we were sitting there in surgery prep. We also shared a laugh that the anesthesiologist totally seemed stoned. (no, we don't think he actually was, but it was funny to envision). The good bye was not any easier than last time, but I did inevitably have to leave. Rather than spend the whole day at the hospital, I came home and grabbed a jog, shower, and a coffee and then took to the waiting room with my book. The surgery was a tad shorter than expected (yay!). I will say that the time spent in the consultation room waiting for the doc is just grueling. I sat, I stood, I step-tapped.. and my stomach just fluttered. When our doc came to the door (he's adorable) he held out his hands, said he was sorry to make me go through this again and gave me a giant hug. We are so lucky to have him as our leader on this journey. He drew me this picture of John's guts as we talked.
He removed the three tumors. They had grown since discovery, which aligns with our first experience. John's cancer means business when it is released into the wild of his guts. The good news is that the drug he was on (Gleevec) kept it contained for three years without incident. This only resurfaced when he stopped taking it (under doctor supervision of course. Those with less aggressive forms of GIST have gone off and stayed clear. I don't want to in any way insinuate that this was a doctor screw up or us requesting to go off. This was the original plan.) So the surgery was a success and far less organs were cut this time than last time. What I am hoping is that will mean a shorter amount of time without food and shorter hospital stay. But today was long. The hospital seemed to be really full today (:( sorry for those who had to receive bad news) and everything was delayed. John was supposed to hit his room an hour after surgery, so around 5, and I first saw him at about 7. When I did, he was happy and feeling strong and looking good. Like this:
He is going to be OK. He will continue to work on being healthy and happy and most importantly, we'll be on his drugs forever. I don't think we would be here if he would have stayed on them.
I have to say that I feel so lucky. Cancer is a beast. There are families that hear that there are no options and their plan is for managing the decline of a loved one's life. There are patients who don't trust their doctors or think they are making the wrong decision but due to insurance, can't request a second opinion. There are people who do not have insurance. There are people in the waiting rooms who are told that a patient died during surgery. There are patients who come out of surgery with their lives fundamentally altered because a doctor had to take more than expected. None of these things have happened to us and while this isn't something we envisioned happening in our lives, we HAVE our lives and in a week or so, I'll bring my husband home and we'll get right back on track with living those lives to the fullest.
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