The pre-surgical appointments all got done and are out of the way. I know pretty much what to expect at this point.
The Visual Fields Test was sort of revealing to me. My peripheral vision is worse than I thought, and I’ve got a couple of other blind spots I didn’t really realize were there. They made perfect sense when I was doing the test, but hadn’t registered just walking around. I’m not sure what all I’ll get back after the surgery, or how long that will take. It sounds like some of it will be sooner than later.
My sister insisted on being here for the surgery. On one hand, I’m really glad she wouldn’t take no for an answer, but I also feel bad that she’s having to burn more vacation to be here again after just being here in June. My friend the RN will also come back to help out. I’m also eternally grateful for her help, too. I’ll have both of them go with me to appointments to help with questions and concerns. An extra set of ears can be really helpful. My parents want desperately to be here. I wish that could work. I’ll have them out later when things have settled some and I’m feeling better.
Another thing that happened this week is that one of my co-workers started a MealTrain for me. There are a couple of people putting themselves on the calendar to bring meals after surgery. This is pretty cool.
Friday, September 28, 2018
My sister flew in a little early from Minnesota to help me with home prep and hang out some before surgery. She’ll be here for surgery and part of the week after. I do enjoy hanging out with her and running around Seattle showing her some sights. She’s also really good at logistical stuff, so I know we’ll get a bunch of things figured out before Monday.
Over the weekend, we had brunch with a couple that I’d met in the Infusion Center at the hospital. The husband had a brain tumor and we’ve kept in touch. This weekend was the first time I’d seen them in maybe 4 months or so. I was impressed with how much progress he’s made since I saw him last. We talked about his surgery a bit – I wanted some idea of what to expect. His experience was a lot different than I thought but it was nice to see them and catch up anyway. I’m not sure his experience made my sister feel any better, though.
Monday, October 1st
I had my first brain lesion removed today. It took about 3 hours and it went well. No surprises, problems or complications. My sister expected that I’d be groggy or tired after having brain surgery. I wasn’t and I didn’t expect to be. They weren’t removing any part of my brain. They removed a tumor that is still breast cancer. It just has, for whatever reason, a friendly environment to grow in in my head next to my brain.
The only thing that wasn’t quite as planned is that it took longer than expected to get me up to my room, but that had nothing to do with me and how I was doing. It was all hospital logistics. Thank God. My sister and I were both able to order dinner when I got to my room. The cafeteria food’s not spectacular, but it’s better than some other places I’ve gotten food downtown, so it worked.
Overnight, I didn’t get a lot of sleep. The nurse has to do neuro testing about every hour. They are making sure that there are no new issues like problems with vision, touch sensation or nausea – so there’s like a 10 step protocol we go through every hour along with meds on different schedules and just trying to stay comfortable. I have a bunch of staples in the back of my head with a big bandage over the top. I had some ice packs that felt pretty nice on the dressing, so I went through a pile of those. There wasn’t, and still isn’t, any real pain to speak of. I have a little bit of a headache, but nothing that a Tylenol doesn’t fix. I am glad for this. I am not, and have never been, a fan of narcotics or opioid pain killers. I’ve just never liked how they make me feel, so I’m grateful that Tylenol is enough for this, too. I am hoping to be able to nap today.
Tuesday – October 2, 2018
Overnight, I had an IV replaced at midnight because the first one was hurting me when the nurse tried to use it. The neuro testing went down to about every 2 hours instead of every hour. I was able to sleep a little bit before the nurses came back at 3 am for meds and tests. They warned me that they’d be back at 5 am to remove my catheter. Little did I know that would start the parade of doctors and other people coming by to see me for the day.
The Neurosurgeon came by first thing this morning and told me that he’d had a chance to look at the visual fields test and that some of my deficits are coming from the 2nd lesion in my Occipital lobe, and he’s going to have to re-think going in and taking the 2nd one out. There is some healing that needs to happen first. What I learned at that moment was that what he meant by how I recovered was how much of my vision was coming back and not how my head was healing from the first surgery. Silly me.
The Neurosurgeon’s PA came by a little later to look at the bandage. There wasn’t any significant bleeding or drainage from it or anything.They told me that I’d be taking it off the next day and to wash my hair like normal and to not put anything special on it – just keep it clean and dry. I asked her to change it while my sister was there so she’d know what to expect. I didn’t want her to freak out when we got home and took it off ourselves. The PA obliged me. I’ve got 15 staples in the back of my head. My haircut looks a little weird, but hey… I just had a brain tumor removed. Not going to worry about it for a while. It’ll grow back, and thankfully faster than it did after losing it all from chemo.
The Oncologist was next to check in. We talked a little about the new targeted therapy I will be starting in 2 weeks. She is scheduling a PET for next week to make sure that there’s nothing else new that we don’t know about. Yes, it’s a lot sooner than they usually want, but these are extenuating circumstances. There is no way of knowing how long I’ve had these tumors, which means they could have been here for years or just a few months.
We had a longer conversation with the Radiation Oncologist. We had lots of what-if questions that we wore her out asking. That’s what happens when you’ve got someone who’s their own advocate and an EMT who want to make sure that you’re getting the care that these doctors would be recommending to their own families. These questions were more aimed to what the steps would look like if the 2nd tumor isn’t removed and they do radiation instead.
A little later in the morning the Occupational Therapist came by with instructions about what I can and can’t do for the next month – For example, Getting dressed/undressed, I’ll be sitting in a chair to put shoes and socks on because I won’t be able to bend over to tie my shoes. I’ll need to squat down to pick things up instead of just bending over. He also made sure that I had people to help for the next couple of weeks, which I do.
There was also a visit from a Physical Therapist. We went down the hall for a walk to make sure that I could navigate stairs and objects on the floor. I was a little wobbly looking around and trying to walk at the same time, so she reminded me that I’d have to significantly slow myself down and not try to do as much multitasking. I didn’t expect to feel that way while I was walking, but she’s right. I am going to have to slow way down and stop for a while. I don’t want to fall.
The Neurosurgeon came back twice. Once to talk about the MRI and the last time in the later part of the afternoon to let me know that I could go home when I was ready. Either today or tomorrow. I am tired. I have no desire to be poked at all night long again, so I want to go home. So… A few hours later… just a little more than 24 hours after having a brain tumor removed, I was home.
I can’t (and probably don’t need to) tell you how nice it was to be able to sleep through the night without being poked. I slept pretty much the whole night.
Wednesday, October 3, 2018
Today was a day of hanging around the house and resting. My sister went out for a while to pick up prescriptions and get a few things from the store. I puttered around on the computer a bit and found that reading the screen was still a big challenge. I watched some TV, did some napping next to nothing else.
I’m really lucky to have the sister I have. She’s really good at thinking 10 steps ahead, so there wan’t much we needed to do around the house when I came home after surgery. Which meant that we could spend more time just hanging out. On top of all that, though, she’s an awesome cook and baker. I’d picked up a bunch of fresh blueberries and blackberries and was going to make myself a cobbler, but time got away from me. Today, she made me one of the best blackberry cobblers I’ve had since I left Texas 9 years ago. That’s priceless.
Thursday, October 4, 2018
I swapped caregivers today. My sister had to get back home, and my friend, the RN, flew in at about the same time. I was sort of hoping they’d be able to high-five each other in the airport, but that didn’t quite work out.
I also went back to work today. Before anybody gets freaked out, me going back to work means putting a 2 lb laptop on my lap and taking a couple of calls while poking at a website. It’s far from strenuous. It helps keeps me sane while everything else in my world has been spinning out of control for the past 3 months. It’s the only “normal” I’ve got going right now and I’m doing all I can to preserve that. At least as long as I can. We’ll see how I do in a week or so.
Friday, October 5, 2018
I worked some day today, as did the RN. I was able to get a couple of things accomplished, and then needed a nap. While I was sleeping, she helped get some donation stuff in my garage organized for me. This was a HUGE help. I’d been wanting to get this done since last fall when I started my chemo treatments and haven’t had the energy to go down and get it started much less done since. She did some other organizing for me upstairs, too. Some other things in the living room/dining room had gotten away from me that my sister and I weren’t able to tackle, so it was good to get them back under control at least a little bit.
Saturday, October 6, 2018
After being in the house all week, I was feeling a bit cooped up so the RN and I decided to see what was going on at the Issaquah Salmon Festival. I figured there would be food on a stick and there was a photographer there selling prints that I’d wanted to meet for a while. Seemed like a good opportunity to do just that, but it wasn’t the brightest thing I’d thought to do. Actually, it was a significant learning experience.
We did a good amount of walking there from a parking lot, which was good. I need to get more exercise. Once we got to the festival, I had a hard time for a bit with people walking around me. I had some different expectations about my vision out there than I did at home. Not sure why, but I did.
We did find some food on a stick. By that time I was getting tired and it was time to head home. We walked back out of the festival and got a shuttle bus back to my truck. I was too tired to walk the rest of the way back. I needed a couple of things from Target so we stopped there on the way back home. The second I walked into the store I realized that the surgery had caused a new issue with glare from fluorescent lighting. OMG. It was beyond awful, and I could barely get around the store. I felt a little panicked, actually. I was already struggling with people walking close to me. Add the glare to that where I can barely see where I am going, and it was a scary nightmare. There was no amount of shopping for anything else that was going to happen there because I just couldn’t take it. We got the main thing we went there to get and we headed back home. It was another quiet evening of TV and relaxing.
Today starts the high-protein pre-PET scan diet. As I’ve said before, while it’s do-able, I’m not a fan. Especially when I have someone delivering homemade food that I would really love to eat. Fortunately, I’ll be able to go back to regular food on Tuesday.
Sunday, October 7, 2018
Today was a day of doing nothing. Getting out yesterday was nice, but it took a lot out of me. I napped a good chunk of the day. We went out for a short walk to Starbucks on the corner, but that was about it for out of the house and off the couch activities for the day. It turned out to be a nice do-nothing day for both of us. We had some nice salads and a roast chicken that my neighbor brought home from Costco for us. One more day of high-protein diet.
Monday, October 8, 2018
Both the RN and I worked part of the day today. I napped a bunch again. We took a walk around the property and back. Later, we went out to run some errands. It is good for me to look around while she’s driving and to walk around different environments.
That was my first week in a nutshell. Brain surgery on Monday, back to work Thursday and learning my limits over the weekend. The issues with glare were something of a surprise. I hope they go away at some point. One of the things I am learning is that my contacts and some sort of readers are the only way I can see halfway straight. Neither pair of my regular glasses are working – the old ones or the new ones. I don’t expect a huge change overnight, but this is a little curious to me. It’s a biomedical puzzle to think about. Tomorrow is the day for appointments. Neither of us will have time to put in any hours at work.
Tuesday, October 9, 2018
Today is 8 days post-op and appointment day from hell. First thing at 7:30 am was the PET scan. It’s not horribly involved. I have to drink half a barium drink, then get a radioactive agent injected, sit there for 40 minutes or so while it works its way through my system, drink the other half of the drink and then use the bathroom and lay on a table for about 40 minutes. The RN couldn’t sit with me while we waited for the dye to make its way around so I was more bored than usual.
Between the PET and the Visual fields, we had some extra time, so we stopped by the Infusion Center to talk to the Oncologist. She had results from the PET already. She said that there was something in my lung, they weren’t sure exactly what it was, but were assuming it was cancer, and we’d talk more about it on Friday when I came to start the Kadcyla. This was not happy news. Again. I’m so tired of not good news. This is another one of those where it could be something not cancer. They just can’t tell from the scan and there’s nothing to biopsy. I’m not happy. But… I remember another one of these where they used the same terminology and that was something that wasn’t cancer, so I’m not devastated about this yet.
There was still enough time before the next appointment to stop by the cafeteria and have breakfast. I was starving. I couldn’t eat or drink anything after 7 pm last night. We talked about the appointments so far and how bad the glare was on that floor and the hospital in general. Amusingly enough, we both picked up a Rice Krispie treat for later. Hers came from one of the local bakeries and mine was from Kellogg’s. Hers was probably better. LOL I’ll have to keep an eye out for that brand next time I’ve got an occasion to go to the cafeteria rather than have something delivered to me at the Infusion Center.
From there it was another Visual Fields test to see what’s changed in my vision since the surgery. The worst part of this was getting into the hospital, and particularly to the Ophthalmology floor and finding that the glare on the floor was overwhelming. I didn’t notice any significant difference in my vision myself. We’ll see where I am in a few weeks with peripheral vision, I guess.
After that, we headed to Neurosurgery to get the staples removed. The nurse who took them out told me that it’s like plucking a hair. She wasn’t wrong. There was a tiny pinch on a couple of them but otherwise, it didn’t hurt. She told me to keep them clean and dry like before.
The Radiation Oncologist was next. We had to drive to the other hospital where I’d had the radiation done on my breast and chest. The first thing we talked about was the PET. The Radiation Oncologist said she’d looked at it herself and said that the findings there were consistent with after-effects from the radiation we’d just finished and weren’t anything to worry about. They were normal. That was a huge relief and I told her she’d made my day. We talked a little more about the options for radiating the remaining tumor. I asked about proton beam therapy. She explained why that wasn’t an option and asked why I was asking. We told her we’d just watched a PBS special on the Mayo Clinic and they’d talked about it in relation to a patient with a brain tumor. She laughed and asked what it was about Minnesota people and all their questions. She is referring me to a Radiation Oncologist who specializes in brain radiation. I will meet her in a few weeks. This is another case where the initial healing where the 1st tumor was removed needs to heal and the swelling go down some before they can do anything else.
The RN and I made some stops on the way home. This was really smart on her part. I was able to see how each grocery store’s lighting affects me. I will be pretty well stocked for food for a while, which is good. It was interesting to see which grocery stores were more navigable than others. By the time we got home, we were both spent. She made the comment that I’d sleep well that night. She was right. I slept like a log. Tomorrow she goes home. I’m going to miss having people to talk to who help with everything around the house. I’m sure I’ll be fine. It’s still bittersweet.