Beautiful Words

My PET scan report came to me in the mail this weekend. These are always fun to read. With that in mind, I thought I'd post the report here. These are posted as two images. If you click on each one it should bring it up to full screen so that you can read it more easily.

There are some very beautiful words in this report.

PET Scan Report from 1/19/2011

I just got a call from the (new) oncologist's office to let me know that my PET scan from 2 days ago came back all clear. Whew! I can't help but worry after one of these scans is done. And it's hard not knowing the result for days, knowing that the result is known by someone. So I am grateful that I got a call ahead of my appointment next week. So far, so good with this new oncologist.

I actually meet with him next week and will have some blood work done. The next scan should be in three months, so I can rest easy until then. Let's hope that I can have an unblemished spring and summer this year. The next couple of scans will be key. It's been 6 months since my surgery... getting through a year will be crucial and I am halfway through it. Everyone keep your fingers crossed for the next 6 months for me, please!

MRI Result Today

Last week I had an MRI of my abdomen. This has a limited view of the lungs (just the very bottom of the lungs) and also does not read the intestines very well. For a good image everything has to hold very still and intestines are actually always moving. But, for what it could see, everything is all clear at this time.

The oncologist up at Stanford will run a CT scan in January.

Of course I am thankful for the clear scan and for the times that I'm feeling great, like now. But I want to pass along to you that I've been told (by a couple of oncologists) that the chances for a cure for me right now is 10-12%. Which means that there's a 88-90% chance of it coming back somewhere. Of course, I'd like to beat those odds but it's just something that I have to face. I will cherish the times that I feel great and feel like my old self. That's all I have to say about that at this time.This may not sound positive to you, but I am actually being positive. There's no need to view all of this in a negative light. It's not helpful.

8/16/2010 Stanford Oncologist Follow-up

Today David and I met with Dr. Fisher, the G.I. Oncologist at Stanford University Hospital. We expected to hear nothing new today. And for the most part, we didn't. Firstly, he summarized the working theory that has driven the Tumor Board's decisions thus far. They are banking on the possibility that the tumor cells that were growing in this recent lymph node were "left behind" cells from the original surgery 2 & 1/2 years ago. These cells may have escaped the same time the cells that traveled to my liver previously escaped, and have just been hanging around while unfortunately surviving 2 rounds of chemotherapy. If this is the case, then there's a possibility that they have removed the remaining stragglers and this *could* be the end of things. We are looking on the bright side of things here, which is the right thing to do.

He also repeated that he does not see any reason to resume chemotherapy at this time. He'd rather save those bullets for when and if they may have more benefit. If this surgery has, in fact, removed anything remaining then there's no reason to subject me to poison. And if there are any roaming cells, well, let's face it, 2 round of chemotherapy haven't eradicated them so why should a third. So, we are going to hold tight for now and keep an eye on things. It may be that in the future, chemotherapy may be used to shrink future tumors and so we'll save it for times like that.

So, for now, no chemo and no radiation.

He also then said he'd like to rescan me in January and then in June (if the January scan is clear.) I have to admit that rescanning in 5 months feels strange but I guess that also gives me through the holidays to take it easy. Also, my recurrences have not come back all that quickly after each surgery. The first one was 10 months after the first surgery. This past recurrence was 17 months after the second surgery. (Let's not muddle things with the fact that the first one came back 3 months after chemotherapy ended.)

I will be discussing these recommendations with our original oncologist to see if she's comfortable with this plan. She can always order interim scans if she feels that I can benefit from greater frequency.

8/9/2010 Surgeon Follow-up

Dave and I rushed to get to our 10:30 appointment on time. Then sat around for nearly 2 hours. But that's beside the point. The real news is that my CT scan looks good. There's nothing on it that shouldn't be there. Also he said that the Tumor Board is not recommending chemotherapy or radiation at this time since all indications are clear. This is just what I wanted him to say. :-)

I have to wait a couple of weeks before I can do any exercise without lifting or impact. So, in a couple of weeks aerobic type exercises should be OK like elliptical trainer or bicycle. A month after that it should be safe to do things with more impact, like jogging.

He told me that the oncologist on the Board (Dr. Fisher) wanted me to follow up with him at this time so I will go see him next week, on Monday. I'm not sure what he can tell me that I don't already know but I will find out next week. After that I will likely make an appointment with the local oncologist who will manage my follow up scans. I'll know more next week.

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!]

Stanford GI Tumor Board *or* "You Had Me at 'No Chemo'"

I feel like a boomerang.

When we arrived for our appointment we met with Dr. Fisher, an oncologist at Stanford. He said that his first impression would be to leave the tumor where it is and treat it with chemotherapy. His thoughts were that when the first tumor was found it was surgically removed immediately, followed by 6 months of chemotherapy. Then when the lesions on my liver were found they were surgically removed right away and 6 more months of chemo followed that. So, there has actually been nothing to prove that chemo had worked. So, he suggested leaving the tumor in to have something to watch. Then they will know if the chemo is effective. This made sense to me and it also sort of mirrored what we already saw as our path.

Then we went on a break and returned to the room after the board met.

The next doctor to walk into our room was a GI surgeon. He proceeded to tell us that they believe this tumor may not be metastatic in nature but may be original cancer cells from the original event 2 1/2 years ago. He thinks they may have been left behind and stunned everytime we did chemo, but not killed. So, they came to a consensus that there's a better chance for a cure to go in surgically again and remove this node, and other ones around it. Because it seems like the chemo hasn't prevented anything anyway, and maybe if they just go in and take it out it will finally all be removed. There's more of a curative chance this way where with chemotherapy it will start to become more of a maintenance chronic issue. And to top it off, they don't see any reason to do anymore chemotherapy after the surgery. At most they may do some intraoperative radiology while I'm in surgery if they aren't able to get "clean margins". The oncologist did return to the room later and told us that he agrees with this plan.

So, they are thinking that in the next 2 weeks I'll be in the operating room with this GI Surgeon, a Urologist, and an Interventional Radiologist. The urologist will be there to do what's needed for my kidney and the ureter - this may mean relocating the kidney as if it was a transplant. The ureter will have to be "resected" and if the remaining tube isn't long enough to reattach to my bladder then they may have to move my kidney closer to my bladder. Strange, but it makes sense.

I'm told that this is a very complicated, invasive operation and I'll be in the hospital for at least a week. He said it will take many, many weeks to recover, and strongly advised us to postpone our plans for our anniversary party. So, that will be postponed for probably 3 months or so.

Let's hope that they are right and that this is "encapsulated" cancer cells that were left behind and they will be able to remove the last bit of them. While I'm not looking forward to recovering from yet another invasive surgery, I have to say I'm very relieved that it won't be followed by 6 months of chemotherapy.

My Night in the Hospital

All this past week (since Monday) I had been experiencing low-grade nausea but not enough to throw up or to stop eating. I attributed it to stress even though stress has never affected me in that way before. Also I was constantly thirsty. On Wednesday evening in addition to the nausea I started to feel cramping in my left side which started quite quickly. It started under my ribcage in the back left side and radiated around a bit to the front. It would cramp and throb and would get worse if I sat or lay down. Also I was getting more and more tired each day. I commented to Dave that all I wanted to do was take a nap all day but I had too much to do.

It's easy to put all of these things off as things that are "in your head" because I don't want to come off as a complainer.

Anyway, yesterday (Thursday) my nausea got progressively worse such that I wasn't able to eat normally. When it came to dinnertime I couldn't bear the thought of eating anything and my side was cramping so much. I was so tired but lying down to rest did me no good because I couldn't get comfortable. When Dave got home from walking the dogs I told him how much discomfort I was in and told him I had also called the oncologist to see if I should go to the ER. Shortly afterwards he called back and said yes, go to the ER. So, we did. After an hour wait in the waiting room I was finally taken to an ER room and given some anti-nausea and pain medications. They admitted me overnight (El Camino Hospital's room are something like 80% private) so that they could monitor my nausea and pain and gave me medications as needed. This morning at 7:30 the urologist showed up to place that stent that was scheduled to be installed next Monday. Apparently my kidney just had enough and started to get very angry.

I am home now and the pain and nausea are gone. Looks like the stent is doing its job of opening that tube so that the urine can drain into the bladder as it should instead of backing up into the kidney.

Reasons for Chemo Start Date

In case some of you are wondering why the chemo isn't starting right away, here are the reasons. I also posted this in a comment to another post but not everyone will look at the comments.

I have 3 main reasons for waiting until the 5th. Firstly, I want to speak with the Stanford folks first to see if they have any newer, better ideas. That appointment is next Wednesday, June 30th. Secondly, I always prefer to have chemo on Mondays because that gives me the best chance of feeling good and energetic every other weekend. Thirdly, starting July 5th makes chemo weeks skip important scheduled events, such as our Anniversary party.

Well, I guess there may be a 4th: I have so much to do and am not mentally ready. I wanted to get through a couple of weeks to finish a couple of projects before I'm unable to. :-)

Today's Updates

Yesterday Dave and I met with the new oncologist to see what he had to say after he met with his tumor board. He said that they agreed that a biopsy was not necessary because of the elevated CEA level. Then he said they also agreed that I should have a stent put in place to open the ureter that's being pressed on by the tumor. We arranged for that to happen this coming Monday. It's an outpatient procedure. I'll be put to sleep during it so I'll be comfortable. Hopefully the stent won't give me any trouble. I'm told it's uncomfortable for some people.

He still likes the plan to leave the nodes in place for now and load me up with every chemotherapy drug possible. Then he would take out the node (surgically, radiologically, or with the Cyberknife, whichever method is appropriate then) either mid-way through chemo or at the end, if anything's left. He expects to see it shrink quickly.

We do still want to speak with the Stanford GI Tumor Board next week. I believe there will be some value in learning what they have to say. Also we can learn if there are any clinical trials that I should consider.

I did ask him how long does he expect me to be able to work in my garden. He said that at this point, statistically speaking, I have a 10-12% chance of this 3rd round of chemo to eradicate everything and cure me. That means most likely it won't cure me. But it could buy me a couple of years at least until new drugs are available and perhaps later on something might be more effective. At the least, he expects that I may have to keep going through this with long breaks in between and I should be able to play in the garden for a few more years. He's hoping that some new advances might turn that into decades. Eventually cancer will be treated like a chronic disease where a person might have to take drugs for the rest of their life but it keeps the cancer from being fatal. I guess we are hoping to buy time until something like that happens. I know that there are researchers all over working on that as fast as they can.