12/4/08: Day 1

Yesterday John went to have a scan on what he and his doctor were certain was a hernia. It was no big deal. I mean, hernia surgery is kind of a pain, but these things happen and we know lots of people who have had a hernia surgery before. I was out for a jog when John got back from the doctor and when I came into the house he walked out of his office and told me "It's a tumor." His doctor had called in a favor from a personal friend who was a surgical oncologist and made us an appointment for today. We didn't know what to expect. Can you have a tumor that isn't cancer? Will he take out the tumor while we're there today? If it's a tumor, shouldn't it come out as quickly as possible? We learned a lot that day and saw the scan and the size of the tumor was amazing. They estimated to be about the size of a football. They didn't know what kind it was, so he'd have to have a biopsy. That was scheduled and we left the doctor's office completely overwhelmed with this giant obstacle that had come into our life and hoped that we could overcome it with our life still well, with our life. To talk it out and hold hands for a bit, we stopped for a slice of pizza and a couple beers. Here is John after saying "Well, here we go."

We had the biopsy done and the tumor turned out to be GIST. It is rare and does not respond to chemo. We had our tickets to Mexico and the doctor told us to go. He couldn't schedule John before then anyway. Luckily, and probably because we finally knew what we were facing, we had a great time in Mexico. John felt great for the entire time, except for the last two days when the cancer (which he had named "Tommy the Tumor") made it's residency in John's belly well known. We got home and rested and ready for what would be a very difficult battle.

1/5/09: Before.

That's not a fat belly, notice how the protrusion starts up in the rib section. After seeing the scans that showed it from the inside, seeing it so visible from the outside was awful. It was a giant intruder.

I cannot tell you how hard it was to say goodbye to each other when they took him away for surgery. It took more than one try.

1/6/09: Update #1: The death of Tommy the Tumor.

John is recovering from surgery in his hospital room. I was there when they rolled him in and he said "Shan, I'm a series of tubes, just like the internet." So at least we know that they didn't remove his sense of humor. What they did remove, in its entirety, is the tumor. Tommy is gone. I had spoken to the doc and asked because I knew John would want to know, and the first thing John said when he saw the doc, was "How much did it weigh?" Those of you who have given birth will give extra respect... The tumor was 10 pounds. That's what he's been carrying around. He had been bleeding into it, so it was like a giant sack in his abdomen. Tommy wasn't quite ready to leave and did take some souvenirs..... In order to get him out, they cut out part of John's stomach and large intestine. They also took half of his pancreas and his spleen (spleens are dumb, he didn't need that anyway). The doc assured me that his has enough pancreas to be fine for the rest of his life and when i asked "and how long will that be?" he said he hopes very long. This was a VERY major surgery. Tonight he already sat up twice and is bound and determined to get to eat as soon as possible. (He weighed in at 197 this morning. On Saturday at the gym, he was 211. I'm sure the bowel cleansing and fasting yesterday takes credit for a lot of that, but jeez...) I know there will be ups and downs in the next couple weeks, but I was happy to see the up tonight. Something else I was happy to see tonight? John's belly. Now it was still bandaged, but as the doc told me earlier "it goes in instead of out." For those of you who have had the pleasure of seeing Tommy, you are going to be dumbfounded. Last but not least, he's going to have a big scar. You'll probably want to see it. Also, I'm betting that will be blogged as well :)

I have no idea when he'll be ready for visitors. I will let you know. They only want two at a time, and the room is small, so I'm going to ask that people coordinate that with me when they want to swing by, but I will let y'all know when that time is near.

We both want to thank everyone for their thoughts and prayers and good vibes and everything that was focused on us today. We have the best friends in the world.

Also, he told me before I left to make sure to tell everyone "hi." :)

1/7/09: Update #2: Training for the Marathon

Today the goal was to get John onto his feet for a little walking. This involves unhooking all the tubes and getting him re-hooked to be mobile with the epidural/iv holder. When we got him sitting this morning he was really dizzy but we got him standing. The walk was short, out of his room and back, but a walk none the less. Later in the day, we tried again. This time, he felt better and set a goal to make it to a color change in the carpet. When we got back close to his room, He said he had more in him and went to the window. That was a great walk. Something extra special is that as soon as we got back from that walk and he got situated, flowers showed up from Team Chockstone. He loved them and the timing was perfect. This afternoon we watched some tv and everything was going well. I left to get a workout and when I came back, his pain had increased, so they upped the meds a bit. Also, about that time, there was a new nurse assigned to us and she realized we were minor local celebrities and upgraded us to the rockstar room, which was much bigger than our regular room. Once we got John in there, it was time for one more walk. This was about 5 times as long as the second walk and he paraded his fine self down to the nurses station to show off. He's thinking maybe I should bring his motorcycle chaps in to wear for the walks.

He's also requested that I bring him some fishnets to replace these white knee highs...

His progress is going extremely well. The things that are supposed to go down are going down and everything they measure is at the level its supposed to be. I have high hopes for tomorrow as well.

To answer some questions that I've been asked: We are at Providence in NE. Visiting time is coming, and I'll just want you to let me know so I can do some coordinating and we don't end up with 10 people there (even our rockstar room can't accomodate that and we also have to let the nurses do their stuff) I know a lot of people are volunteering to cook for us once we get home. Here's the thing. Food, in any real state, won't be for a while. He'll be on liquids and then to a limited diet, which even I'll be able to handle preparing. and the cat just eats cat food and the fish eat crickets and if you know me, you know that I survive basically on nachos and peas, so please use your culinary skills to make something for your family and toast us when you eat it. However, if you want to bring a 6 pack of beer over, John can't drink it and I have really enjoyed telling him how awesome it tastes. It will be even better when I can do it in front of him.

John said to tell everyone hi :)

1/8/09: Update #3: Pedicure

Warning: The pictures on today's blog may induce sayings of "Holy (insert expletive here)!!!" Proceed with caution.

Today when I got to the hospital, the first thing John said is "today's nurse is no bueno.." (it's cute how we speak Spanish after Mexico, I know :)) and then he wanted to go for a walk right away. We took a nice long walk and asked if they'd change his sheets when he was gone and get us a fresh "dress." The nurse was ridiculously incompetent with even the simplest of tasks but the assistant hooked us up and even gave me a foam cleanser so that I could give John his sponge bath (FYI: not as sexy as it sounds). We got him cleaned up and into a rockin' new dress and back into his bed to start the day. His doc had ordered some blood for today so with us watching every move very closely and the task taking twice as long as it should with Nurse Nincompoop, the blood was going in. With some time to kill, I busted out my rainbow of polishes to give John some fancy toes to look at while he was laying there. He decided on blue with a glitter topcoat. Viola!

Once the toes were dry, we put his racing socks on and hit the road for another walk. When we came back it was time to take out the blood iv. Nurse Nogood started to take it apart and it dripped. then it dripped some more. then she decided to hold it over John and she went to the other side, dripping blood all over him and his bed. Then she got it tangled with the other tubes and dropped it on the ground. Then she left it there while she attempted to untangle everything, leaving more blood on the ground. Finally someone came in to help her and she decided to back away and take John's vitals. She had the audacity to say "your blood pressure is a little high" and I couldn't bite my tongue and mentioned that it might be because she just dripped blood all over him. Finally she left us to our bloody mess and the assistant came in and changed the sheets while I helped John into his second new dress of the day. Unfortunately for us, there was another blood iv that we had to have. Nurse Failure came in and voiced some questions aloud to the universe while hooking it up and finally John asked her to please verify what she was doing with someone who knew. At that point she said "Its just hard because we don't do that many transfusions or epidurals here" -record scratch- whoa! a) "we" as in Providence Medical Center? um, I bet that's not true. b) if you mean "I" then I would LOVE to talk to your supervisor about why you were assigned to us and c) are you freaking kidding me?!?! You are telling a patient that you don't really know what your doing as your putting fluids into his body?!?!?!?! Then she added it that is was extra difficult because you needed double signoff in the computer. um, may I be the first to say THANK GOD! anyway, after this, we told the assistant nurse that we would like to officially request to never see this nurse again and the assistant took care of us for the rest of the shift. Of course our next nurse, like everyone else with the exception of Nurse Whoshouldn'tbeanurse, was delightful and took great care of us.

Now!! What you've all been waiting for!!! Da da da daaaaaaa! May I present to you: The exit wound!

Let's zoom in on that shit:


John thinks the belly button is in there somewhere, I think its gone. Either way, it will be one hell of a scar.

PS: Mr Rock, you are beaten, and I officially declare the contest over.

1/9/09: Update #4: Stir Crazy

You could pick almost any Friday night in the past year or so and you would be able to find us sitting at the bar at Cava. We would have either walked there together or met there after our workouts. We are not there this Friday. I can promise you that right now, we are really missing it. But we will be there again. Today was a good day, if maybe a little uneventful. Our nurse was delightful and everything is just kind of going as it should. John and I typically are the first to say "if you're bored, then you're boring." Well, I think we are going to amend that to disclude a scenario when you are in the hospital, full of tubes, only have basic cable, and are confined to one floor. In that scenario, no matter how interesting you are, you may get a little bored. We got a little bored today. But we went for a walk....
After our first walk, I had John stand up next to his bed while I gave him his bath and changed his dress. Apparently standing did him in because he was exhausted after that. good to know. So I went to get some coffee (I feel bad having any snack in front of him, since he is limited to ice chips, but I still have to eat and its actually more fun to have snacks so we can at least talk about them, even if not sharing them.)

Speaking of snacks, that's one of the hardest things. For both of us. John can't eat. John hasn't eaten anything since Monday, when he was on a liquid diet with a bowel cleansing routine. We are anxiously awaiting his guts to wake up so we can start down the road to real food again. If you don't know this about us, we are kind of big on eating together and making it a big deal. We have dinner together every night, with rare exception, always have. We eat out all the time and can spend an entire day around deciding where to stop for a beer and some sort of treat. So not only can he not eat at all, but I have no one to eat with (I know, friends would come to solve that, but right now, what I miss is eating with John.). I'm surviving on apples and granola bars while I'm at the hospital and I am eating real food (peas and nachos, sometimes even a combination of the two..) when I get home. but we are both ready for us to have a meal together, even if it is only chicken broth.

Something great is that one of the tubes that connects to the wall was removed today and one of the iv sites was taken out. any less tubes are a good thing. Plus, now we know enough to be able to make ourselves mobile for a walk with no nurse to help us. We asked if we could be pointed toward a scale and John is weighing in at 192. now, I have never known him this thin but for one thing, he's going to bulk back up and another thing is that he has to, because he's a bobblehead right now. But a cute one, and a big flirt with the nurses:

We strolled through the cancer ward tonight, hand in hand, and walked to all of the windows that were there and looked at the pictures on the "pet wall" and talked about which food in the world would taste the best and even though he's not in the shape to give me a good romantic dip, I still got a twirl....

Visiting can happen tomorrow between 12:30 and 4. Call me if you want to swing by so we don't stack up. No one can stay long and at one point in that time, we'll have to do a walk, so you may have to wait outside if we're preparing or just coming back. Every couple minutes his energy level can change so keep that in mind.

PS: Thank you all for the emails and comments. I have 8 pages of the printed notes that I am taking him tomorrow to read.

1/10/09: Update #5: Tired.

When I envisioned how the hospital stay would be, I figured that I would have a lot of free time because John would be sleeping a lot. He's really not. Our days are actually quite active. However sometimes in the middle of a sentence, his eyes close and he's asleep, but it's only for a couple seconds before he is awake again. Also, he's not really sleeping super good at night. First, the hospital just isn't the coziest place. Also, the nurses come in every so often to take his vitals or change something or check something, whatever the case may be. Then there's the alarm. the. damn. alarm. Now today, we just took the sensor off because it was so annoying. It monitors his heartbeat and the oxygen in his blood. When the oxygen level gets to the preset bottom limit, it beeps. It also seems to be a Wife Proximity Monitor. The second I get across the room or am in the middle of something, it inevitably beeps and then I have to stop everything to go silence it. We hate that thing. But at night, John has to wake up and reach over to silence it. So anyway, he's tired. I'm tired too.

One thing that happened today is the nutritionist gave us a list of foods for once John comes home and can eat again. and there's even some good stuff on there! It was nice to just be able to look at that and know that we have some decent food in his near future.

Something else great about today is that we upped our walks from 3 to 4! Also, we think that tomorrow we are losing a couple tubes. The less tubes, the better. I hated the lotion that they gave us so I brought some from home today so now John smells good and so does his whole room. Also, John had me bring his clippers so he could give himself a trim!

Pretty handsome, for a guy with a tube in his nose :)

(Make sure to click "Older Posts" down to the right to continue the story)

1/11/09: Update #6: We wait

I don't have a lot of exciting news from today, but it was a good day. We were both in good spirits and had a good time and everything is still going as it should. No tubes came out today, but some are coming out tomorrow. The major thing that we are waiting for is, believe it or not, for John to pass gas. That will let us know that his system is awake and ready to rock. So, everyone please, as odd as it sounds, keep your fingers crossed for a fart.

We are going for walks like its our job. It helps to alleviate the boredom, though not much. Something cool today is that we got to leave our floor. We aren't supposed to because someone could mug us for the goodness in John's epidural. (sad, yes) but we found someone today who was all "don't tell anyone" and we rode the elevator and walked around the first floor. It was awesome. We hope everybody had a good weekend :)

1/12/09: Update #7: Food!

By this morning, alas, no toot. However when the doc came in, he said that he was going to start John on the liquid diet today! This was going to be the first food he'd had since the liquid diet he was on LAST Monday!! First thing on the menu was some Jello (well, not actualy Jello, but a reasonable facsimile). This pleased John very much.

The thing that we had to be careful of is that he would get nauseous. If that happened, he still had the tube through the nose to suck everything out of his stomach. but it didn't. everything went down smoothly. He had some sorbet and some sherbert and also, a couple cups of tea. He did have one issue. hiccups. He pulled a muscle in his shoulder and every hiccup hurt. He ended up with them twice and they sucked. However, we learned a hiccup healing trick that actually did us some good. If you have hiccups, you have someone put their fingers kind of looped around the back of your ears, kind of pulling up on the bone there and if stars align at the same time they do that, the hiccups will stop. Also today, the epidural came out. Now he has a button for pain meds. All in all, it was a successful day. We are happy that John is able to have some food. really. really happy about that.

1/13/09: Update #8: Ups and Downs

Today was a bit rough. In the transition from the epidural to the iv with a button for John to push to regulate the pain meds, he went a little slow and the pain gained more than the meds took away. At the same time, he was experiencing some tremendous gas related pressure from the surgery. Apparently when they do surgery, there is a lot of air that gets trapped and now it is trying to escape. I'm not going to lie, today for about 5 hours, John laid there and every couple minutes, yelled out in pain. It was pretty hard to watch and be able to do nothing to help. The nurse even peeked her head through the curtain and said she was afraid to come in. She told me to imagine the worse gas pain I've felt and then magnify that times about a hundred. That's what John was experiencing. It finally got under control later in the afternoon and we got to end with things the way we are used to. Some good news today is that the tube in the nose is gone:
and for the first time in a week, we got to have a snack together. We got to share a cup of tea:

Probably the best thing that happened today is what we stumbled upon on Comedy Central at just the right time. Years ago, John and I watched this comedian that we both thought was hilarious, but we didn't get his name and we hadn 't run across him since.... until today. Now, I just grabbed one of the first Youtube vids I found, because John and I will watch them all together when we get to be home..... Dear readers, Jeremy Hotz:

1/14/09: Update #9: Last Lap

Today, for the first time since last Tuesday, John got to wear pants! Yay pants!! With the exception of the iv site on his neck (which is left there in case needed), and the wound drain (which is no big deal) he is tube free! This morning, they told us that we are on the discharge list for tomorrow. However, it's been a very tough transition from iv pain management to oral pain management (taking pills instead of having an iv) and so I think they are going to keep us an extra day to figure out what is going to work for John. Today was another brutal day of John trying out different drugs/doses/frequencies and not finding a fit. These days are hard all the way around. For me, watching him and hearing him in such obvious discomfort is almost unbearable. I'm freaking helpless, there is nothing I can do. For him, he's in excruciating pain and is completely dependent on the nurse to guide him and he has to rely on that nurses's best judgement, competency, experience, and understanding of what he's going through. Basically, a crapshoot. In the meantime, his body is going through major trauma. The way I look at it, he had: part of his stomach removed, part of his intestine removed, part of his pancreas removed, his spleen removed, and oh yeah, the tumor removed. Any one of those would be a major surgery, so he had 5. He's actually doing really good, except for the pain. and I think, once we find the magic drug combo, he'll be well on his way to recovery. Every time that we get him comfortable, pain-wise, he's his normal self: smart, romantic, funny, sarcastic, kind of a jerk :)....(sorry, i have free reign with this blog update thing for only a few more days, I'm going for it :)) I'm looking forward to starting our routine at home, but am not rushing it. We will get the pain management under control so that when he gets home, he can focus on healing.

Here he is, rocking the pants and the kick ass scar, looking handsome.

PS: Brian, I didn't see it til you said it, but I see more Viggo Mortenson every day. Things could be worse.

1/15/09: Update #10: Walking Papers

After two pretty tough days, yesterday being particularly difficult, it seems that today they figured out how to manage his pain. Now it has to still go through the night and into the morning to be a success, but we are on the right path. Barring catastrophe, he will be home tomorrow night. On our couch, watching our tv, with our kitty, that's when the real recovery can begin. and I think that will start tomorrow. With the pain mostly under control today, I got to finally take him off the fourth floor and we borrowed a wheelchair and I wheeled him around the lobby and through the cancer ward. It was a much needed vacation from the halls of 4G. Also today, he ate like a champ. Three whole meals. Given how much his insides were disrupted, the eating and digesting is going really well. He has a restricted diet from the nutritionist for the recovery period. It's the most retarted thing I've ever seen. One section completely contradicts another section and leaves me standing in the store with the list in one hand, a food product in the other, staring at the shelf saying "What the *&^&?." So anyway, I got some basic stuff to get us started (which I totally called the nutritionist about to give me Yay or Nay on the stuff I had questions about) and once he's home, we've discussed some meals that will be totally on the list that we can prepare and enjoy together and I think that will be fun.

Also today, he got the staples out (32, for those who tried to count them).
Apparently, it's going to get all crusty and scabby and heal itself into one hell of a scar.

1/16/09: Update #11: Home

We made it! The hospital stay is over and now its time to recover at home. The only bad thing is that today, he had to get flu and pneumonia vaccines and so now one of his arms is brutally sore. The pain meds don't really seem to help with that. The good news is that we're home, and he's in his own space with his own tv (and our cable is better than the hospital's). Everything he sees, touches, and smells is comfortable. We'll keep everyone posted, although at this point, maybe not every day. Also, I may interject my thoughts here and there, but John will probably start updating his blog with what's going on. Feel free to continue to read here if you want, although I'll probably go back to my normal posting of random stuff from my life. So the focus will change from news and updates to entertainment.

We would both like to thank everyone who has been with us through this life detour and I hope that you all know how much we appreciate being in your thoughts and prayers.

1/16/09: Update #11 Addendum: Returning to normal

(Click "Older Posts" to continue)

1/22/09: Update #12: Dates

Yesterday, John and I walked down to Pizzacato for lunch. Last night, we made our first appearance at Cava since the surgery. John celebrated a successful day with a half of a beer. Normal life, we are working our way back!!

3/6/09: Something good.

Today we went to the doc to get the results from John's PET scan last week. It came back totally clear. No pets. Which means John did not eat the kitty.

It also means that it showed no cancer. none. Based on what they told us prior to the scan, we kind of expected to see some little splotches of it. But they didn't even show us the scan. Cuz there was nothing to see. Some unexpected good news is something that we haven't had in quite a while. Now, he still has to go on the insanely expensive drug to keep the cancer from coming back and neither of us have jobs and we'll have to get him on COBRA once the paperwork gets here so that he has continuous health coverage and so we're not out of the woods but today at least, nothing more was heaped onto our pile and with some good news, it feels like the cloud that has been hanging over that pile moved on.

Also, we don't have to go back to the doc for 2 months.

We're totally buying a lottery ticket today.

10/12/09 and beyond: Life Update

John's cancer is kind of known for its tendency to come back. John's doc was pretty certain he'd gotten it all in surgery, but there was always some fear that there would be a little bit left or that it would grow back anew. The drug he's on is supposed to keep that from happening. He hadn't been scanned since shortly after the surgery and we have been kind of wanting another scan to know what was going on in there and to make sure everything was still good. We trusted that the doc got it all but at his last appointment with the oncologist and with his regular doc they both said that his tumor was such an anomaly because of its size that a) he was really lucky to be alive and b) he would be studied for a long time. It made us just a little nervous as he was scanned a couple weeks ago and we just found out that:

which means we would like you to all do this...

________________________
Later reflections:

I'm very happy to announce...

Reflection: January 6, 2009

Unexpected.


This is crazy.

and then it came back................