No News is Boring News

Someone just asked me if there's nothing new in my blog does it mean good things or bad things. Generally anytime there's anything of note to post we will be sure to do so. If I'm unable then David is very good at doing it for me. If there's nothing here for a few days it's because I don't want to bore anyone with posting the same thing every day!! Right now I'm not doing much. I'm resting a lot every day, letting my incision heal. I pretty much eat, sleep, read, watch TV. I've also been practising my knitting, hoping to catch up so that I can attend the final class. I'm not sure I can accomplish that since the final class is 2 weeks away and I still need to make up the class I missed while I was in the hospital. But, it's possible still and we'll see.

Otherwise, that's how my days are going. I get up, eat, read, have lunch, nap, read, watch TV, walk around the garden, rest some more, help make dinner, eat, and then we watch TV each night before heading to bed. Then it starts over again. I have my next CT scan scheduled for August 6th and my follow-up with the surgeon is August 9th. At that time I'll learn what the board's recommendations are for follow up treatments. Perhaps more radiation. Probably not chemotherapy. I hope not. It hasn't shown to be very effective anyway and if I'm destined to have more surgeries to remove lesions I'd rather not make my life more miserable by adding months of chemotherapy in the mix.

I will have my stent removed from my left ureter on August 6th as well. It'll be nice to have that out. Sometimes I feel like something's poking me from inside. Which it probably is.

So, until August 9th I probably won't have anything of note (medically) to post. But soon I'll put up more pictures of the baby pumpkins! We have 5 or 6 growing right now.

Back in the Saddle

Hello everybody. Today I finally feel clear-headed enough to take the blog over again. I'm not in much pain, thanks to careful use of Percoset. I take one when I go to bed to make my sleep more comfortable and restful. After breakfast I shower and take another one to make the morning more comfortable. If I'm uncomfortable in the afternoon then I may take one after lunch. That's about it - three per day. Sometimes I wake up in the middle of the night with my upper back aching and I'll take some Tylenol - the Percoset shouldn't be taken on an empty stomach. But the last couple of nights I've learned that if I shift to sleeping on my side early I can escape most of the back ache.

Mostly during the day I rest while watching TV or reading. I take a lot of naps. I'm also up quite a bit. Like right now I'm sitting in the living room. I was reading and decided to post this using the handy iPad that Dave got us for my hospital stay. (Did I mention that I have a great husband?) When I get tired of sitting up then I may head upstairs to take a nap.

In the evenings I actually seem to have more energy. I come down for dinner and stay up for a few hours while we eat and watch some TV. Then I go to bed and read some before surrounding myself with pillows and drifting off to sleep.

Overall I'm comfortable and David does all that he can to make sure I have everything that I need. I'm just going to take it easy and let my healing body use all of the resources that it needs.

I'd like to thank everybody for all of the kind words of support and for following my progress on my blog. This really is the easiest way to keep everybody informed. Of course you are welcome to call - this is not meant to completely supplant human contact! But for a quick check-in on me this has proven to be the best and easiest way to keep everyone who is interested up to date.

Stanford Round 2 Day 7.5

[ David for Laurie ]

I have to type quietly so I don't disturb Laurie. You see, she's upstairs resting and sleeping. She came home last night to a flurry of fur and excitement. We let the dogs greet her at the car so she would be protected from their excitement. After that we got her upstairs and in bed to relax.

She's eating, albeit not a lot, and getting lots of rest. We watched some TV together and she got to sleep around 10. The biggest challenge she has now is that her back is sore from laying in bed for so long. That is probably the source of most of her discomfort.

Tomorrow she'll be able to take a real shower and that will make a big difference. I know that she'll start to perk up after that and feel so much better.


BTW, we've had a great house/dog sitter over the last week. She's stayed at our place and ensured that the "kids" were well cared for. This week would have been absolutely insane if it wasn't for her. Thanks for the referral Barb.

Stanford Round 2 Day 6

[ David for Laurie ]

The news for today is that the doctor would like to discharge her tomorrow. We're keeping our fingers crossed, but we don't know for sure what will happen. We need to make sure she's comfortable and they are going to try and see if her system will work right without the catheter. If the system doesn't work right they'll put one back in and she'll probably come home with something. Let's hope we don't have to worry about that.

We had 4 different nurses through the course of the day. This is what happens when patients go home and the staffing ratio stays the same.

Laurie was up for a walk 4 times and has transitioned to all oral pain pills. They did add some potassium to her via IV this evening, but the IV was to be removed after that is complete.
She's eating fairly well at this point. Not a lot, but she ate a good amount of her dinner and that's a very good sign.

That's it for now. Hopefully tomorrow I'll be writing this for her while she's upstairs resting.


Other than that, all is good.

Stanford Round 2 Day 5

[ David for Laurie still ]

Well, we kind of moved sideways today. I think it is probably progress overall though.

Late last night they put the catheter back in. The reason was an explanation for why she constantly felt she needed to pee. It turns out the systems weren't really working right yet. Your bladder starts telling you it's time to go when you have around 600 cc's of urine in there. Laurie was retaining over 500 cc's when she'd pee instead of completely voiding/emptying her bladder. So she'd quickly hit the point where she needed to go. So the system wasn't working right. She'll have to deal with the catheter at least until tomorrow.

On the positive side today she's eating real food. Not much, but she hasn't been eating for 6 days, so what would one really expect? The doctor came in today and said she could eat anything she wanted to eat. He said to treat it like she'd just had a really bad flu for the past 3 days. My parents were coming down to take me to lunch and do a very quick visit, so I asked them to drop by Whole Foods and get some of their refrigerated chicken noodle soup. Laurie ate a 1/2+ cup at lunch and another 1/2+ cup at dinner. The doctors also realized they had the wrong diet going for her. She should have been on a "Post Op 1" meal instead of liquids. That means things like soup and a little bread instead of this jello and broth bit. We think that one of the problems with her appetite is that they gave her beef broth a couple times and it didn't work at all.... Now she's eating a little. That seems to be slowly waking up her system. Tomorrow I'll bring in some instant Cream of Wheat for her breakfast. The other very important thing is that eating means she can start getting off the IV pain meds. The pain medication requires food to take, so this is the first step to getting her off the IV and moving towards home.

One other thing is that they have moved from the standard IV to using her mediport. This was the 4th day on the IV's and they'd have to change them anyway. Yesterday she was beginning to feel discomfort from the IV's and they removed the remaining one early this morning. She woke up with a wet hand, so the IV had stopped working (the valve there was letting out the forced fluid). They usually don't like to use the mediport for some reason during surgery. I think they just don't want to take the risk of something going wrong with it.

When I left this evening she was fairly chipper and in reasonably good spirits.

Stanford Round 2 Day 4

[ David for Laurie still ]


Today was pretty much like yesterday. Laurie managed to get the chicken broth consumed before I got there this morning. That was pretty much the only food she took in though. Her appetite just isn't there. It may be the beef broth though. She also seems to have something going on that they are saying is just acid reflux. She feels like she has a lump in her throat. They prescribed something for it and now we need to see if it really works. This is just something that happens apparently when the system isn't really restarted yet. Her surgeon was by again today and said to take her time and only eat/drink if she's hungry, let her body drive things.

Not much else to report. She did pass gas, but just a couple of small toots. This is progress, but we really want her system to settle soon. They removed her catheter today, which is good.... but it means she has to get up and pee all the time and that's at least once an hour with the fluids they are/have been putting into her.

Hopefully tomorrow she'll be feeling more normal and be able to eat and get around more comfortably. Right now she's still on the PCA and probably will be until she can eat. Only then will she be able to take the oral pain killers as they need to be taken with food.

That's it for now....

Stanford Round 2 Day 3

[ David for Laurie ]

Well it's been another eventful day at Stanford. Laurie went on 4 walks around the corridors and everything appears to be going as expected. She's beginning to feel some general discomfort as her body start working normally again. Hopefully that means we'll have an important event occur overnight. We'll see though as last time it was day 4 or 5 before that happened.

I want to thank everyone who's passed along their thoughts and wishes. Laurie asked in particular that I post this picture she took today. Thank you Sandi for the Texas Roses for my Texas Rose.

Stanford Round 2 Day 2

[ David reporting in for Laurie ]

There's not a lot to report today. Laurie is immensely better than she was after her liver surgery. They've got the right mixture of non-narcotic and narcotic meds working for her. She was up 3 times while I was there and had 2 fairly long walks out of those (the first time out of bed wasn't for long or far). There were plans to get her out later in the evening again, but I left around 7:30 or so.

Everything is going along fine. No real food yet and not much of the liquids yet. I suspect she'll start becoming hungry tomorrow. The next major milestone is for her GI system to demonstrate it is functioning (i.e. she needs to fart).

That's all for today....

Stanford Round two Day One

[David writing for Laurie...]

We arrived at Stanford right on time for our 10:15 check in. Half an hour later they took Laurie away. Roughly 10 minutes later they came to reunite us. At 11:30 I was told it was time to head to the waiting room. The surgery started at 12:25 right between the original time and the revised time. My parents came down and met me for lunch. I tried to relax and eat the fairly decent cafeteria food.

At 2:45pm Dr. Welton came out to give us a mid point status. Dr. Gonzolvo was working on the uritor, but things were pretty much just what was expected. The mass was as expected and he had to remove some of the small intestine and some of the colon because the blood supply for those areas went through the mass. He also had to peel the mass off of the main artery. All had clear margins except for the artery, which was clean, but not with enough margin to avoid needing inter operative radiation. Dr. Gonzolvo was going to need to resect part of the uritor and the radiation would be done shortly after that. It's going to be another 2 or 3 hours of surgery, but she's doing great and not losing any blood.

Dr. Gonzalvo came out to check in at 4:30. All went well and the plumbing is reconnected. Now I'm just waiting for Dr. Welton to tie the rest of the plumbing together and close up. Dr. Gonzolvo figured that would be no more than an hour. Then it's just a matter of going through recovery.

The volunteer came to me at 5:45 to let me know that Laurie was in the closing stage. Now just to wait for the doctor to return with any last minute information. Dr. Welton was out 5 minutes later to say that nothing changed (which is good news). Now to wait for the recovery to complete and for her to be released to her room.

It's now 8:45 and we are now in Laurie's private room. It appears she got the best room on the floor. It is what she deserves!!

That's all for today. Tomorrow I'll tell you how she's doing and about her first walk. Everything is looking good and it looks like they are going to ensure her pain is well managed. Everyone has been super nice today. It's been a great experience as these things go...

My New/Old Weight Loss Program

I don't know when I'll be allowed solid food again. And I love food. Today I cannot eat anything more solid than Jello. I can drink "clear" liquids, which do include Coca Cola. Basically I can eat or drink anything that you can pour out of a glass and it leaves nothing behind, coating the glass.

Tomorrow I get no food or drink whatsoever. And I know from experience that I'll not be allowed anything more solid that Jello or a popsicle during my week in the hospital. Maybe towards the end I'll be allowed cream of wheat or some brothy or creamy soup.

Anyway, it's true that you should be careful about what you wish for. If you wish to lose a few pounds it may happen.

Surgery is Scheduled

I think the nurse up at Stanford has been working in a whirlwind today. She managed to get all of the players to be available for my surgery on next Tuesday, July 6th. The urologist, radiation oncologist, and the surgeon will all come together to play around with my insides for about 5 hours starting at 10:30. So now I am clearing my calendar and wrapping my head around this. I'm glad for the suddenness of this because July 6th will be the last day of life for the growing tumor in my abdomen.

[Edit: As of now (7/1 at 1:54), the surgery will be at 12:30 instead of 10:30. I am not sure of this is set in stone yet, but that's the latest.]

[2nd edit: The surgery is actually going to be at 12:10. Not that 20 minutes matters!]

Decreasing Pain, Knitting, and Food

Dave said I should post... I wonder when he will start up his own blog?

OK, here goes. As it so happens I do have some stuff to say, so I guess it's time to make a new post. The pain has decreased to a point where I don't have to be on pain meds all the time. The last two days I took a pain pill only once per day, and nothing yet today. I'll only pop one if something starts to get too sore or achy. Otherwise it's feeling better. I still have trouble sleeping on my side, though. I try to roll over on it from time to time to give my back a break and sometimes it's comfortable and sometimes my ribs ache. So, I do it when I can. I am up and about most of the day now with perhaps a midday nap. I am also trying to stand straight again which will help my back a lot. We have a follow-up appointment with the surgeon on Thursday. Maybe he'll give me clearance to drive!

The other day my mother-in-law, Mary, came over to hang out with me while Dave was at a hockey game with his dad. She brought me some beginner knit supplies and an instruction book and tried to teach me how to knit. After practising yesterday I am finally getting it but I still need to learn how to hold the needles. I do this thing where I sort of prop the left needle up in my lap to free my left hand to manage the yarn. It's actually working quite well for me. They say everyone develops his or her own techniques. OK, I guess I'm developing mine! It may be a while before I can make anything useful. I'll start out with a scarf attempt and see what happens.

The people from work have taken up bribery! They have organized to make wonderful meals to bring for Dave and me to eat. I suspect the underlying goal is to guilt me into returning to work when my treatments are over! That's a joke, but no matter the motive, Dave and I are so touched to have such great people supporting us. Probably soon I can (and will feel like) meal prep again. But having ready to eat food in the fridge has been a real treat and has taken one task out of our hands during this difficult time.

Bizzaro-World

There's not really anything new to report. The new pain meds are helping a lot and I am more comfortable. I also sleep a lot. And the pain meds seem to have a strange side effect: I'll call it "auditory hallucinations" though I may be using the term in the wrong way. What I mean is when I am sleeping (or rather on the edge of sleep) I hear things that are so real, like I am sure that David has walked into the bedroom to check on me, or something like that, but when I open my eyes he's not there. The first night it was more bizarre: I kind if doubled the dose. Meaning I took one pill on time and then took another one an hour or so later when I headed to bed. That night I was hearing things when my eyes were closed. I don't remember all of what I heard, but one thing was a radio. When I opened my eyes the radio stopped but as soon as they were closed again the radio started again. The effects were gone by morning. And me hearing Dave by my bedside was during this afternoon's nap. I'll see what happens tonight. I suppose this is harmless. I will probably mention it to the oncologist tomorrow during our appointment if it happens again tonight.

Speaking of the oncologist: we have an appointment in the morning. I'll let you know what she has to say.

Thank You David, and Come Back Anytime!

This is just a quick note to let everyone know that I am around still, and to say hello. What, a collective groan? I know, Dave is actually much more of an eloquent writer than I am and I know that you'd rather he keep writing. He's good, isn't he? But he keeps pushing me to take back over the posts. Hopefully he will feel welcome to pop in here whenever he wants to spread the word about something, or has an unused soapbox that he has found. I would like to publicly thank him for posting what he did and for maintaining the blog overall. It was a big help. There's no way I had enough energy for all that. I would have said "Yep, still hurts, check back tomorrow" or something like that. Which, by the way, it does, and I'm hoping that tomorrow is a better day.

Well, that was all a bit random, I know, but he made me do it while on drugs!

Morning Update

[David again]

We had some success with medications yesterday. Finally we got the muscle relaxant prescribed and that seems to have helped last night (although I know she was up a couple times, so I'll have to follow up after she wakes up). She's sleeping soundly right now and that's a good thing.

We also heard from the oncologist late last night. She knew the doctors aren't great with pain management and she prescribed something stronger. Unfortunately, it's an opiate, so we need to pick up the prescription and take it to the pharmacy (some things can't be called in) and it was too late for me to get it from her. So in about 45 minutes I'll be the one standing at the door to their office as they open....

Overall, Laurie is doing much better, but still having some pain and muscle spasms. We're getting the pain levels down though between time, getting better meds and knowing how to apply the meds.

What's Your Pain Level??

[David for Laurie again]

Laurie is consistently reading the blog and responding to brief emails. She's still pretty tired though, so don't expect too much if you send her a note (that ties into the subject of the post later on).

Our first night home was a rough one. I was really close to taking her back to the hospital around 1am. There are some simple instructions they should have given us that they failed to do:

1. Do not under any circumstances lay on your right side. You can cautiously tilt to the left and sit in a chair to make your back more comfortable. However, rolling onto your right side will be EXTREMELY painful.
   
   
2. It's OK to take two Vicodin at bedtime instead of 1. The real guideline is to take the Vocodin for pain, but due to the acetaminophen content and it's effect on the liver do not take more than 6 pills a day.
   

When we got up and going Monday morning I called the clinic right away about Laurie's pain and my concern. I got to a triage nurse at 8:30. By 10:30 I called back and was told they were still trying to reach the team. At 12:30 the Surgeon's assistant called and said she wasn't working that day, but got the message and called us anyway. At 4:00 we got a call from both the triage nurse and the lead Resident Surgeon on the case. They were trying to reach me to talk about Laurie (they didn't know the Assistant had called). WTF?? Fortunately, Laurie got better as the day went on or I would have been totally balistic and sitting in the Stanford ER asking for them (with Laurie of course).

[brief break here while I get out my soap box on another topic]

How many of you have been asked by a nurse or doctor "on a scale of 1 to 10 what's your pain level?" What the heck does this really mean? How many of you were actually told how to use the scale? They say "10 is the worst possible pain you can imagine". How do I know what that is? I did some research last night and got a bit of useful information. Here's a good link: http://painconsortium.nih.gov/pain_scales/index.html.

I think the best guide I found was in a nurses blog. A male patient replied that his pain level was a 10. The nurse stepped back and said, "OK, let me be clear on this. If I took two bricks and slammed them together on you testicles, that would be a 10. Now, what's your pain level?" The patient meekly replied "3".

Unfortunately, there is almost NEVER a clear explanation given to the patient. Not once did I hear an explanation provided when we were at Stanford, but I heard the question almost every 2 hours and Laurie often replied 5 or 6. Having now educated myself I realized that Laurie was consistently low by about 3. If I'd known I would have spoken up at the time. Laurie was pretty out of it, but I know her well enough to have said she was really much higher. Lesson here: if you're in significant pain and someone asks this "wonderful question", always error on the high side.

I found myself really ticked (understatement here) at the Surgeon who kept countermanding the residents and others who saw Laurie. They saw her and understood that her pain levels were much higher than she was verbally saying. It was crystal clear when he saw her Thursday night. He seemed to actually give her less pain medication when countermanding instructions prior to seeing her. He didn't want her to be groggy. Well, if you're in extreme pain and unable to sleep wouldn't you be groggy?? Lack of sleep does that to us, right!! Needless to say, I'm going to have to be very careful what I say to the surgeon when we see him in a week. He was way under medicating Laurie and it was just cruel to see the pain she was in because he has a conservative approach to pain management.

[carefully descending from soap box]

I talked with an oncology nurse who has been in touch with Laurie over the past 6 months. It's part of this wonderful Cisco benefit program where someone checks in with Laurie to see how she's doing and ensures that she has what she needs and gets all the information on what's going on. She was livid on the phone. She said doctors in this situation are notorious for under medicating pain. She spent a while on the phone with me explaining the pain scale and helping me to understand things.

The good news is that I now understand the pain scale and I have a better understanding of how to ensure we keep Laurie around a 3 level so she can rest and recover. Now I just need to get them to give us a muscle relaxant so that her muscles will quit twitching when she's trying to sleep. That's today's mission.

Laurie is getting better each day, I just wish I knew from the beginning what I know now so that I could have helped to avoid some of her pain and discomfort.

Home Again, Home Again, Jiggity Jog

[David again, at Laurie's Request; which reminds me to get the wireless working decent for the bedroom]

OK, no jogging for Laurie just yet, but she is home. We left just before 11am this morning. Theo was very excited to see Laurie and we let him come meet her in the car. We wanted to ensure he got some of the bounces and wiggles out before we tried to get Laurie into the house.

We got Laurie settled into her bed and then I went out to get some groceries and the one medication that we didn't already have.

About 3 Laurie came down (yep, down the stairs on her own with no warning!! That was a nice surprise) and said she was hungry. We got some graham crackers for her and she went back up stairs to munch and watch some more soaps.

An hour later and I got a message from Laurie requesting that I write this update. I'd say she's feeling more like her normal self now... :-)

Rise and Shine

I see that Dave has been doing a fine job posting updates on here. I am very quickly discovering that I am not very coordinated right now so all I intend to do is say "Good Morning".

Saturday Night Update

[David here again]

I just wanted to put in a brief update at Laurie's request and a correction.

First the correction. I misunderstood the surgeon on Wednesday. The second lesion was actually on the liver over the gallbladder, but they removed the gallbladder as a necessary precaution.

The update is that Laurie was up for 4 walks today. The last two we did the "wedding walk" around the nurses station a couple times. No IV stand for support, just my arm like we were walking down the aisle. Somehow I think it was a bit more romantic and the scenery was much nicer when we did that 3 1/2 years ago.... She's getting stronger. Every walk helps to get her blood moving better and she is more alert (although it's tiring). Hopefully she'll have soft food for breakfast. I won't take her home until she's had something besides clear liquids. I want to ensure that she doesn't have nausea issues here at home.

The only other thing is to explain our posts and Facebook comments about the "3 martini's" and drinks. I don't think either of us realized that this probably went over most people's heads since we're the ones on the inside joke. The first bolus of drugs that the anesthesiologist gives you makes you feel like you drank 3 martini's really fast. So that's where the references comes from.

[David for Laurie one more time]

I'm hoping that starting tomorrow Laurie will be up to doing this herself so you can get her perspective on things. We'll see though.

Laurie is continuing to get stronger and more pain free. She sleeps a lot, but one would expect that given there's not much else to do and she needs to rest to heal. She's been up a couple times to walk around the nurses station and to do the necessary things. All critical bodily functions are operational and that means that we're clear for departure tomorrow. Dr. So was in today to check her out and said things look good. After her latest walk she got back into the bed without my help and that's really important. The more she gets in and out of bed without me the easier it will be for her in the long run (I won't be here in the middle of the night if she needs to get up to got to the bathroom and we all know one doesn't want to wait for the nurses as that could cause messy delays).

Nothing else new to report though. A couple more walks today before I leave and she's getting better.