My Accidental Scarf

A week and a half ago, my mother in law, Mary, started paving a new path for my idleness. She brought over a few starter knitting supplies and showed me how to do the basic stuff. I started practicing on a light blue yarn and decided that if I keep going it will actually become a scarf. Here's how it looks today:

The dark blue band is also from a practice session. I asked Mary how to change colors in the middle of a project, so she showed me. I decided that a dark blue band on each end would look nice so I switched it back to light blue and will make the other end the same, when I finally reach it. I was also thinking that a fringe using a combination of the light and the dark blue will set the whole thing off nicely when it's complete.

So, anyway, I just wanted it on record that it's her fault when I spend money on knitting-related items. Just so my husband knows!

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.

A visit to the Oncologist (the second adventure begins)

[David adding his nickels worth]

I was going to start this with “here’s the poop”, but then I got derailed about what a crappy situation this was and I it just went down hill from there. So then, I restarted with “ok, here’s the scoop…”, but then I got sidetracked because guess what I am always using a scoop to pick up (think Theo here) and I ended up going down the same stinky path. So I’m trying to restart it again….

Laurie and I saw the oncologist this morning and got the scoop on what we can expect moving forward. We don’t have the pathology on the tumors, but that will probably come when we see the surgeon next week. The oncologist wants to have the tumors tested for a specific strain. It may make it possible to do a more targeted chemotherapy regimen. The current plan though is to use the following triad of drugs:

• CPT11 – side effect is about 50% risk of hair loss
• Avastin – due to the metastisis; can effect healing, so won’t start for 2 months
• Xeloda/5FU – similar to before so we can expect the tiredness, like we had before; the two treatments are pill vs intravenous and we have to figure which we want to deal with.

The oncologist is looking at 3-4 months of treatment. We’ll assess as we go along, but apparently research shows that the extra 3 months doesn’t really help that much and the key thing is monitoring. Laurie will get scans every 3 months for the next year or two, then go to 6 months and eventually yearly. They may also begin doing MRIs in addition to the other scans to ensure that we see any undesirable developments. For some reason one of the excised tumors didn’t show on CT or PET scans, so MRIs are going to be needed.

The other thing to decide on is if we want to go with a “pick line” or mediport. The mediport means doing the surgery for that again and we’re not a big fan of the bumpy chest syndrome. The pick line means having a line in Laurie’s arm and some form of bandage around it.

We asked if our April vacation is still feasible. The answer is YES. Now we really need to see how Laurie is feeling, but since she won’t be on Oxaliplatin she won’t have the neuropathy issues. We should be able to manage the other side effects and that may mean wigs if she loses her hair. We’ll have to see how she feels in general though.

So, that’s about it for now….

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.

[David for Laurie again]

Today's a much better day. I was a bit worried when I first arrived. Laurie was sitting next to her bed in a chair, but had been there for an hour waiting for the nurse to come take her on a walk. I don't think this nurse is quite as on the ball as the nurses we've had the previous couple days.

I chased down the nurse and asked her if she was going to take her for a walk and within a few minutes she was there to get Laurie started. She was with us for about 1/6 of the lap around the nurses station and then disappeared. At the half way point Laurie and I were wondering what was going on as the nurse was supposed to stay with us. I saw Kerry the surgeon's assistant and asked her if the nurse should be with us and she said "yes". I gave her a "well?" look and she said she was finishing orders and she'd help. A couple of other nurses were paying attention at this point and helped out as we got Laurie back to her bed.

She's feeling much better in general today. She's been sleeping for the last hour or so and it's more of the normal rhythmic breathing I'm used to. It's funny how we take those things for granted.

I didn't add anything after yesterday's initial post as there wasn't anything productive to say. She was in a lot of discomfort and pain. I can't imagine how she felt, but I know that just sitting with her as she tried to breath was very difficult for me. Her oxygen levels were being closely monitored and were really strong, so it was more a matter of her comfort. Looking back on it I think yesterday was probably so challenging because of it being the first day after surgery (naturally) and I don't know if they had the muscle relaxants high enough. The surgeon came by around 6pm and they increased the pain meds a touch, but the muscle relaxants much more. The word this morning from her is that she slept pretty well.

The rest of the day is scheduled with sleeping, a couple walks, juice or clear liquid some time early evening and as she becomes more mobile she'll get to start doing some more of the things we all take for granted.

Recovery Morning 1

[David posting for Laurie.]

Laurie's a bit tired and sore this morning so I'm blogging for her again. If we're lucky she'll be doing her own blog later tonight. It's a stretch goal, but that's how we do things right now.

I arrived just before 11am after chores at home and ensuring the Theo had some company for a while. He definitely senses something is going on. He curled up under Laurie's side of the desk while I was doing some online work this morning.

When I arrived Laurie was reasonably awake and had already been up and walking (although I have a feeling that there may have been some "golf words" used). She's still in a fair amount of discomfort and walking doesn't do good things for her stomach.

We're hoping that she'll be moved to a private room later today. For now we're sharing with someone and it seems reasonably quiet (although I haven't been here that much during the day).

Post Surgery Update

David here blogging for Laurie.

We got here at 9:40 and waited around until 12:30 before we got into pre-op. Another hour in pre-op and Laurie was given "3 martinis" and she was off to surgery. My parents joined me for lunch and then the waiting room about 10 minutes later.

Shortly after 7:00 I decided to call and get a status update. They were just closing her up and they'd be out to talk to me in 30 or 40 minutes. Dr So came out at 7:40 and talked to us. He removed the lesion on the liver and they also saw a lesion on the gallbladder that they removed. The additional work to remove the gallbladder was the reason for the additional hour of wait time. Dr So indicated that he's going to recommend another 6 months of aggressive chemo now. We'll have to wait until later for those details.

Laurie's now in post op and they'll move her to her room in about 90 minutes.

That's all for now....

The Plan

I finally have details about the plan for the rest of the week. Tomorrow morning I have to check in at Surgical Admitting at 9:40 for an 11:40 surgery start time. The liver resection will take 3-4 hours. After that I'll be admitted to "E3", hopefully into a private room. I made the request but they cannot guarantee it. Then I am supposed to be up and walking Thursday. I can most likely eat Friday. And I will likely come home on Sunday. We will post updates right here. It's the easiest way for us to get information out to the most people most efficiently. Of course, you can feel free to call David on his cell phone if you have any questions or want to keep his mind occupied. I will have a laptop near me and will have access to email.

We did find out that the PET scans and the CT scans from last week look the same as before so that's good. At this point no change means good things.

I wanted to also tell everyone how touching it has been to receive the cards, phone calls, emails, and more expressing that you care. I really do appreciate all of my friends and family. And at a time like this your words, however sent to me, give me comfort.

OK, well, from here on out it's out of my hands. Now I am going to go and repot a large plant while I can still lift heavy things. :-)

How to Grow Tomato Plants in Winter

Just in case anyone is wondering what's happening in the garden, things are still growing. Well, the tomatoes aren't technically in the garden, but who says the garden can't be on the kitchen counter! The center plant grows yellow cherry tomatoes, the other two are working on red cherry tomatoes. Here's a pic:

Also the fava are growing nicely, the frosts we had a couple of weeks ago didn't hurt them at all. Now that it's been warm they are loving life! Here's a pic:
The final pic is of one of my boxes, containing Brussels sprouts and kale:

Acceleration

I got a phone call this afternoon from the liver surgeon's assistant. She was calling to inform me that all of my appointments have been moved up. Instead of my PET and CT scans next week now I am doing them tomorrow. Also my follow-up appointment was moved up a couple of days, to Tuesday. The reason for this is that they are going to try to get me on the surgery schedule for Wednesday January 21st instead of the 28th. Whew! That's next week. Oh, well, I guess I should try to get all I can do done before then. (I know that was awkward, but still grammatically correct!)

By the way, the liver surgeon should be the best at Stanford. His name is Dr. Samuel So and he is the Director of the Liver Cancer Program. Prior to this he specialized in liver transplants. So I know I'm in good hands.

I have applied for disability benefits with the Social Security Administration. It appears if you are stage 4 (which I am now) then you are automatically granted approval. We'll see if that's true.

Stanford Liver Tumor Board Visit

Today Dave and I saw the surgeon at Stanford. He said the lesion is in a good spot - it's on the small upper left end of the liver and is the portion of the liver that is used for donating to children. So obviously there should be no complications from removing that portion. I have to have another PET scan and CT scan (probably later this week) and then after that the surgery will be scheduled. We anticipate that will happen on January 28th. The surgeon only operates on Wednesdays. We got no details on chemotherapy as we didn't actually meet with an oncologist today. I think the treatment will be decided fully once the pathology is performed, after the surgery. He did say that I would have surgery on a Wednesday and would likely leave the hospital on Sunday.

That's really all that I can remember right now.

A Very Small Update

After many phone calls and wheel-squeaking, I now have an appointment Tuesday January 13th with the Stanford Liver Tumor Board. We expect it will consist of the surgeon, an oncologist, and a radiational oncologist. After they meet with me and David they will deliberate amongst themselves and come up with a treatment plan for me (surgery, chemo, etc.) So by Tuesday I should have a better idea about what to expect.

It's about time. My oncologist said that because there is only one spot on my liver it's still considered curable. Great. So, let's delay this for a while until it spreads further and it's incurable, shall we?

Not Really an Update

Just so you know, I'm still in a holding pattern. I sure am getting tired of flying in a big circle! I've been doing that since Friday December 19th now. That's the day that my oncologist called me to tell me that the liver biopsy was positive. She told me that she was referring me to a liver surgeon at Stanford and also requesting a 2nd opinion from the Stanford Liver Tumor Board. She said that if I didn't hear from someone by Monday the 22nd to call a number that she gave me. When Monday rolled around I hadn't heard from Stanford but I didn't know what I was supposed to call for. What, get someone on the phone and say: "My oncologist told me to call but I don't know whom I am supposed to ask for, what I'm supposed to ask for or say"? So, I called my oncologist's office back and spoke with someone at the front desk. She said that Stanford would take a couple of days but if I haven't heard from them by Wednesday the 24th to call her back. So, when Wednesday rolled around I called her back. At that time she gave me another phone number for Stanford and the name of the person to ask for (Laura) who is a new patient coordinator. So, I called Laura and told her that I wasn't sure why I was calling but I was told to call her. She told me that she still hadn't received the request letter and the copy of my records that she requested last Friday, on the 19th. So, I called the person at the oncologist's office AGAIN and told her that Laura was still waiting for my records. I waited until the following Monday to call Laura and she told me that she did get the records (finally) - on Friday the 26th. Tuesday she called me again to tell me that the nurse that has to review my chart was out of the office until Tuesday, January 6th. So, the first chance now that someone will even review my chart to make a plan of action for me is a full 2 & 1/2 weeks after I got the call from my oncologist that the biopsy was positive, and that she wanted to act on it right away. At this point I don't even know if she is aware of the delays. And that's one of the things that has me frustrated. I don't think she is paying very close attention and allowed this to slip through a very large crack.

***Ringing phone***

We just now hung up with Laura and she told me that we'd probably be on the appointment calendar for the Tumor Board on January the 13th. Of course the nurse has to review the chart and make that determination, but if she does say that I am eligible for the Tumor Board consultation then I'd go in on the 13th.

I am actually very strongly considering transferring my oncology treatments up to Stanford Cancer Center. After all, I am fortunate enough to live (relatively) near a top-notch state-of-the-art Cancer Care Center and I may as well take advantage of that fact.