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.
4/18/12 - Up and at 'em
I don't think that a post-surgery day could have gone any better.
When I arrived this morning, John had good color and bright eyes and was awake and ready to hang out. His first order of business? Called into a conference call for work.
This is a place for me to say how lucky we are to have such a cool place to work. Being remote is easy and acceptable and welcome. John had everything he needed to attend this meeting while sitting in a hospital bed full of tubes and afterward, he felt glad that he could participate. At the same time, I am able to answer emails and keep my desk in order while being with him at the hospital.
After his call, the Doc stopped by to do the surgery run-down with John and see how he was feeling. He denied John's request for a martini, but they were able to compromise on some sorbet.
For John and me, this was a milestone. On our last stay, eating seemed to never come. To see how we stacked up, I read through the last blog and he got food on Day 7. and we're on Day 2. this is good.
After that, we were ready to get mobile. We did his first walk and then came back for a bath. By bath, I mean sponge bath and by sponge bath, I mean hospital washcloth, hospital basin, and hospital soap. If you have a sexy incarnation of a sponge bath floating around in your brain, I can assure you that this is not it. That said, I am glad that last time we were here, we had a nurse that offered me the task and this time I could volunteer without hesitation. I also knew to bring our own lotion, toothpaste, mouthwash and deodorant so we didn't have to use the hospital versions. Then, he settled into his bed and we watched a little CSI and played phone Scrabble. Did I mention he's wearing these?
We hung out for a couple hours while he napped and got some blood.
We questioned on our last walk, if maybe they didn't spike it with a little Red Bull. You know, to give him wings....
As with last time, the staff at Providence is just fantastic. I don't know if it's calming or frightening how well I know my way around that hospital. I do know that since we are essentially having the "Lite" version of our last surgery, knowing what to expect is reassuring at every milestone we pass. I also know that John has the right outlook and perspective to leave this with pure success. He is going to be on medication forever, and while that isn't what his original plan included, he's not alone in that commitment and if we are lucky enough to have a drug that can keep his cancer at bay, we will work that into his life.
Thank you to all of our friends and family who have been so diligent in their posts and thoughts as we go through this. We appreciate you in our lives.
When I arrived this morning, John had good color and bright eyes and was awake and ready to hang out. His first order of business? Called into a conference call for work.
This is a place for me to say how lucky we are to have such a cool place to work. Being remote is easy and acceptable and welcome. John had everything he needed to attend this meeting while sitting in a hospital bed full of tubes and afterward, he felt glad that he could participate. At the same time, I am able to answer emails and keep my desk in order while being with him at the hospital.
After his call, the Doc stopped by to do the surgery run-down with John and see how he was feeling. He denied John's request for a martini, but they were able to compromise on some sorbet.
For John and me, this was a milestone. On our last stay, eating seemed to never come. To see how we stacked up, I read through the last blog and he got food on Day 7. and we're on Day 2. this is good.
After that, we were ready to get mobile. We did his first walk and then came back for a bath. By bath, I mean sponge bath and by sponge bath, I mean hospital washcloth, hospital basin, and hospital soap. If you have a sexy incarnation of a sponge bath floating around in your brain, I can assure you that this is not it. That said, I am glad that last time we were here, we had a nurse that offered me the task and this time I could volunteer without hesitation. I also knew to bring our own lotion, toothpaste, mouthwash and deodorant so we didn't have to use the hospital versions. Then, he settled into his bed and we watched a little CSI and played phone Scrabble. Did I mention he's wearing these?
 |
| Tube Socks? |
We questioned on our last walk, if maybe they didn't spike it with a little Red Bull. You know, to give him wings....
As with last time, the staff at Providence is just fantastic. I don't know if it's calming or frightening how well I know my way around that hospital. I do know that since we are essentially having the "Lite" version of our last surgery, knowing what to expect is reassuring at every milestone we pass. I also know that John has the right outlook and perspective to leave this with pure success. He is going to be on medication forever, and while that isn't what his original plan included, he's not alone in that commitment and if we are lucky enough to have a drug that can keep his cancer at bay, we will work that into his life.
Thank you to all of our friends and family who have been so diligent in their posts and thoughts as we go through this. We appreciate you in our lives.
4/19/12 - Transition Day
The day started out great. When I got to the hospital, the first thing I heard was that they were removing the despised nose tube. Here's one final shot with a happy John ready to send it on its way. Last time, he didn't lose it for days and it came out accidentally with a sneeze.
I love this picture of the nurses working on the tubes and John's WTF face :)
ta-da!
The next good news was that the epidural was on its way out. Last time, we had a really hard transition from the epidural to the IV meds so we were nervous about this. It's pretty easy for the pain to get ahead of the drugs and some people don't respond awesomely well to morphine. Apparently, John is one of those. So we spent the day in a balancing act of pain vs nausea. Puking would be bad with a freshly stapled stomach and we know from last time that the pain is not manageable without a steady dose of the drugs. But the morphine makes him nauseous. We had couple doses of anti-nausea IVs and kept the equilibrium in check. It's hard though. Certainly it could have gone better, but I think that we did a good job and most importantly, it went about a million times better than last time. As a distraction, I painted his toes. Blue and gold (the colors of my alma mater, but he's been made an honorary member of my hometown, so we'll consider his Warrior Pride legit)
We heard that it was National High Five Day, so we couldn't miss that.
and every once in a while he would pass out so this was my view, cozied up in the chair with a book looking out at the rain.
We took one last walk before I left to go to dance class and I just talked to him on the phone and he sounds great. It was a hard day, but he was a champ and we were a great team and at the end of this, what matters is that we make it through. The nurses think its cute that we know exactly what to do and what to expect and I'm halfway afraid they're going to start assigning me tasks with other patients. They also think that John is awfully cute and quite a charmer and while I totally agree, I have to say that the competition up there in the cancer ward isn't very stiff and I'll be glad to get him out of there. Again, we're grateful to the staff at Providence for being so cool.
Today was rough and we are both exhausted but we made it, like we always make it, with jokes and high fives and "I love you." Go team.
I love this picture of the nurses working on the tubes and John's WTF face :)
ta-da!
The next good news was that the epidural was on its way out. Last time, we had a really hard transition from the epidural to the IV meds so we were nervous about this. It's pretty easy for the pain to get ahead of the drugs and some people don't respond awesomely well to morphine. Apparently, John is one of those. So we spent the day in a balancing act of pain vs nausea. Puking would be bad with a freshly stapled stomach and we know from last time that the pain is not manageable without a steady dose of the drugs. But the morphine makes him nauseous. We had couple doses of anti-nausea IVs and kept the equilibrium in check. It's hard though. Certainly it could have gone better, but I think that we did a good job and most importantly, it went about a million times better than last time. As a distraction, I painted his toes. Blue and gold (the colors of my alma mater, but he's been made an honorary member of my hometown, so we'll consider his Warrior Pride legit)
We heard that it was National High Five Day, so we couldn't miss that.
and every once in a while he would pass out so this was my view, cozied up in the chair with a book looking out at the rain.
We took one last walk before I left to go to dance class and I just talked to him on the phone and he sounds great. It was a hard day, but he was a champ and we were a great team and at the end of this, what matters is that we make it through. The nurses think its cute that we know exactly what to do and what to expect and I'm halfway afraid they're going to start assigning me tasks with other patients. They also think that John is awfully cute and quite a charmer and while I totally agree, I have to say that the competition up there in the cancer ward isn't very stiff and I'll be glad to get him out of there. Again, we're grateful to the staff at Providence for being so cool.
Today was rough and we are both exhausted but we made it, like we always make it, with jokes and high fives and "I love you." Go team.
4/19/12 - Because its fun
I mentioned the photo challenge earlier. Here's the last three days:
Day 17 - something you don't like
I have to say when I scanned the April Challenge topics, I didn't know what I'd put for this one. I pretty much see the world through rose colored glasses and don't consider there to be much I don't like. Little did I know that since the time I first saw it and the actual day, my husband would be re-diagnosed with cancer and surgery would be scheduled for today. I can honestly say that I do not like the time between when my husband is taken from me for surgery prep and the time before I talk to the doctor post-surgery.
Day 18 - hair
He can't stop me from posting this because he can't catch me :)
Day 19 - orange
This house's yard full of orange tulips makes me happy every day coming home from the hospital.
Day 17 - something you don't like
I have to say when I scanned the April Challenge topics, I didn't know what I'd put for this one. I pretty much see the world through rose colored glasses and don't consider there to be much I don't like. Little did I know that since the time I first saw it and the actual day, my husband would be re-diagnosed with cancer and surgery would be scheduled for today. I can honestly say that I do not like the time between when my husband is taken from me for surgery prep and the time before I talk to the doctor post-surgery.
Day 18 - hair
He can't stop me from posting this because he can't catch me :)
Day 19 - orange
This house's yard full of orange tulips makes me happy every day coming home from the hospital.
4/20/12 - Resting
I don't have a lot to report today. Well I could, but I like to keep a bit of decorum in place so I will refrain the details of today's subject du jour: gas. John is still going through quite a bit of pain while all of his innards fight for their desired position in his abdomen. We secretly wonder if the docs didn't play a quick round of Hot Potato with his stomach when they had it out during surgery since it's so tender now. Something good is that he did a lot of sleeping today and I really think that helps. We are both tired. I left before dark to come home to grab a quick jog, finished my work to-dos and wash my hair. I just landed with a glass of wine and a salad and am beat. Here's to both of us sleeping well tonight and a fun-filled Saturday of recovery.
4/21/12 - Rounding the corner
Now as much as I am grateful for everyone at Providence, the ol' cancer ward is just not an uplifting place. However, when I get there in the morning, I'm glad to know that at least John has the most cheerful room.
It was just happenstance last time that we had gotten back from Mexico and I had all of the pics from the underwater camera and hung them in his room. It ended up being awesomer than I thought. This time I planned ahead and printed a bunch of good ones to remind him of the greatness of our life awaiting his recovery.
I arrived this morning to less progress than I thought I'd see and was surprised the nurse hadn't done everything we'd discussed the day before. Once we did, he had improvement within the hour. It turned a frowny face into a sleeping face and then a smiling face!
We were promoted from a clear liquid diet to a full liquid diet, which includes pudding. This was a success. We took a couple walks and then he had a great nap. After that, an honest to goodness shower. Now, we traded tasks of one of us holding his wound drain and one doing the washing, but it was still a shower and I think that's better than medicine for one's well being. After his shower, he took advantage of the upgraded menu and had me get him a coffee (a real one from a very strategically placed Starbucks). As with all us Portlanders, the coffee turned on his magical powers and we rocked another great walk, probably his best yet. There was some tomfoolery with the back of his robe after this, but I'm trying to keep this a SFW environment, given that a fair number of our audience includes co-workers.
We were promoted from a clear liquid diet to a full liquid diet, which includes pudding. This was a success. We took a couple walks and then he had a great nap. After that, an honest to goodness shower. Now, we traded tasks of one of us holding his wound drain and one doing the washing, but it was still a shower and I think that's better than medicine for one's well being. After his shower, he took advantage of the upgraded menu and had me get him a coffee (a real one from a very strategically placed Starbucks). As with all us Portlanders, the coffee turned on his magical powers and we rocked another great walk, probably his best yet. There was some tomfoolery with the back of his robe after this, but I'm trying to keep this a SFW environment, given that a fair number of our audience includes co-workers.
Now I am a good wife, but I had to get out and grab a little of that sunshine for myself, so I headed out at 5 for a jog around Mt. Tabor and a little bit of vacuuming with the windows open (oh, do I know how to party..) Since I knew that John wouldn't be off his IV today, and therefore not able to get any of the sunshine on his skin, I tried my best to bring it to the room.
High hopes for some real sunshine tomorrow. Thanks for everyone's support and prayers and thoughts and good vibes. xo
4/22/12 - Exit Strategy
Disclaimer: there are some pictures below that may induce squeemishness if you are the squeemish type.
I arrived this morning to a patient on a full liquid diet, which includes coffee not necessary from the hospital menu.
Actually when I got there, I rounded the corner and saw John in the hallway, taking one of his required walks solo - an immediate good sign. He looked great and was obviously past the major issues of yesterday. We went through the process of a shower and I have to admit, we have got this down. If the tech world doesn't work out, we could give seminars on partner bathing (it sounds sexy but wait until you're out of the hospital for any shenanigans). We came out of the shower and ran into our smiling doctor. Today was the day to switch from IV meds to oral meds. He got his first dose of pills and then out with the neck IV.
So I thought I was all "ew, that's gross!" with this picture and then the nurse pulled it out. That shit was about 18 inches long.... INTO HIS NECK! I did the heebie jeebie dance in my head while I tried to keep my composure.
After that, we knew that we were safe to venture off our floor (they told us last time that once you no longer had an IV with morphine, you could go further because there wasn't a risk of someone mugging you for your IV. I know, right? They said that it's happened.) With our new found freedom, we got the hell out into this glorious sunshine!
We came back and John had a real lunch (grilled cheese and chicken noodle soup for the win) and it was time for the inevitable wound shot:
One by one, out they come.
Our nurse for this was great, but I did get the tiniest hint that he liked doing this. He also offered both John and I the chance to pull one ourselves. We declined.
Once he was done, John is held together with tape! No heavy lifting or sneezing please.
After this, all we have left is to get through a couple sequences of pain meds and that's it! We had a visit from our lovely BFFs Jen2 and then went down to hang out in the beautiful, sunny courtyard of the Cancer Center.
We are right on schedule, and it feels good to have this part wrapping up. This doesn't mean we're done, but getting out of the hospital means that you are ready to go back to real life, even if it is limited (which it is). We have to stay on pretty strong meds for a bit (always scary) and John's mobility and energy are both limited so we have to really plan activity carefully. There are some things we both want to take part in at work this week so we are going to try to do that. Again, we appreciate both of our jobs giving us the flexibility to be away from the office and to keep our hands into our work. If you don't see us in person, you'll see us on Webex. Sorry in advance if JJ busts out the scar.
Thanks for everyone's support. The messages and posts are really nice to read as we spend our days getting pissed about whoever is winning Words with Friends. (I was killing it and he got a 99 point word. really?)
I arrived this morning to a patient on a full liquid diet, which includes coffee not necessary from the hospital menu.
Actually when I got there, I rounded the corner and saw John in the hallway, taking one of his required walks solo - an immediate good sign. He looked great and was obviously past the major issues of yesterday. We went through the process of a shower and I have to admit, we have got this down. If the tech world doesn't work out, we could give seminars on partner bathing (it sounds sexy but wait until you're out of the hospital for any shenanigans). We came out of the shower and ran into our smiling doctor. Today was the day to switch from IV meds to oral meds. He got his first dose of pills and then out with the neck IV.
We came back and John had a real lunch (grilled cheese and chicken noodle soup for the win) and it was time for the inevitable wound shot:
The first thing to go was the wound drain. This sucks out any of the fluids a body produces after trauma (imagine a blister but with gut juice). It looks simple enough hanging out of his side, but you don't know until they pull it out that the skin has already started to grow around it and it goes about a foot and a half into his innards. It's the worst part of the tube removals by leaps and bounds. So then we're left with the staples.
Our nurse for this was great, but I did get the tiniest hint that he liked doing this. He also offered both John and I the chance to pull one ourselves. We declined.
Once he was done, John is held together with tape! No heavy lifting or sneezing please.
After this, all we have left is to get through a couple sequences of pain meds and that's it! We had a visit from our lovely BFFs Jen2 and then went down to hang out in the beautiful, sunny courtyard of the Cancer Center.
We are right on schedule, and it feels good to have this part wrapping up. This doesn't mean we're done, but getting out of the hospital means that you are ready to go back to real life, even if it is limited (which it is). We have to stay on pretty strong meds for a bit (always scary) and John's mobility and energy are both limited so we have to really plan activity carefully. There are some things we both want to take part in at work this week so we are going to try to do that. Again, we appreciate both of our jobs giving us the flexibility to be away from the office and to keep our hands into our work. If you don't see us in person, you'll see us on Webex. Sorry in advance if JJ busts out the scar.
Thanks for everyone's support. The messages and posts are really nice to read as we spend our days getting pissed about whoever is winning Words with Friends. (I was killing it and he got a 99 point word. really?)
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