Posts Tagged ‘vacation


A little beach party

Brian and I headed off to Newport on Thursday afternoon. It was pouring rain when we left, but down to overcast when we arrived. We settled in for the night, watching Happy Feet, and I went to bed early, as is my wont these days.

The next couple days were pretty days, Friday clearing up to be sunny but a little cool. Although I spent most of the day either resting or sleeping, we did make it out to dinner. We watched Shrek as our evening entertainment.

And on Sunday, once again I spent the morning resting or napping, but then suggested we go for a little drive up the 101, a drive being about what I thought I could handle. We drove up to just past Salishan, and turned around. Coming back down, Brian pointed out that I hadn’t eaten much that day, so we stopped at Tidal Raves. We’ve eaten dinner there before, and it was extremely good, so I was a little disappointed in my razor clams. But the floor show made up for it by having 3 Orcas playing just outside the windows.

Sunday was a pretty drive home, but, let’s say it all together, I slept pretty much most of the way. All in all, though, it was about spending some loving time with Brian, who gave me massages and took care of me. I just wish I could return the favor.


Chemo #2 – questions, questions, low on blood

Today was a “meet with the oncologist” chemo day. Lab first, meet with the doctor, then chemo.

As usual, we pretty much drowned Dr. Medici in questions. I think he was shocked and a little awed when he saw the list I was reading from. But most of them were quick, easy answers (talk to so-and-so, yes, no, go here, do this). There were a few that got a bit more in-depth, and so our meeting went to 45 minutes instead of the scheduled 30. He’s told me before that he only has one patient who asks more questions than I do, and he says that my questions are usually pushing the “boundaries of oncology”. I think he meant that in a good way.

The best answer was that the pain I’m feeling in my liver *might* be the tumor shrinking. Since the cells are attached to the liver cells, it can cause pulling when the tumor shrinks. We don’t know that this is the cause, but knowing that it could be makes me feel a lot better.

He also approved of going back on nearly all my supplements, and thought it was a good idea, even; especially the Vitamin D and calcium. The one that I have to avoid is the fish oil, because I’ll be starting Avastin next week, and the fish oil could increase the likelihood of bleeding problems. Avastin is the drug that inhibits the growth of blood vessels, and had to be delayed due to the liver biopsy on the 18th. Basically, the inhibition of blood vessels means that wounds don’t heal as fast. Apparently the port placement surgery doesn’t count as a wound, but the needle-pokes into the liver do.

When the nurse came to prep me for the infusion, he said that my wbc and neutrophil counts were very low, so I need to have Neupogen shots every other day for the next week, and a Neulasta shot next Saturday. These are drugs that help your bone marrow start regenerating white blood cells, and neutrophils in particular. In the meantime I’m immune-compromised, although a couple Neupogen shots should help pretty quickly. I’m hoping that by next weekend I’m back into the non-compromised range, because we have tickets to see Mark Knopfler next Saturday evening (dammit, I bought those tickets last September, and I’ve been really looking forward to this concert. Damn you, Cancer! I already had to cancel my New Zealand trip, and am unable to attend my girlfriend’s wedding. Just try and stop me, just try. I’ll get you my pretty, and your little Death of Rats, too!).

The doctor thinks that this’ll probably be an ongoing problem, and so we’re getting pre-auth from the insurance company for me to do my own Neupogen shots. It’s the same process as for giving myself the Lovanox shots that I needed to have after I had the pulmonary embolism. Then I won’t have to go in to his office to have the nurse inject me, which will be nice.

I had developed quite an attitude about giving myself shots in the belly, I think because I felt like I *should* have an attitude. It didn’t really hurt much if you poked the needle in quickly, and the worst part was the burning as the Lovanox was injected. When I realized that I was freaking out over something that wasn’t such a big deal, all of a sudden I stopped dreading it, and it became routine. I figure that’s what’ll happen this time, too.

Fortunately, I’ve got enough belly fat that I have plenty of different locations to give the shots, so I won’t be getting sore in just one spot. I’ll be getting sore in a whole bunch of different spots ;-}

My next big task is deciding what sort of haircut I want before my hair falls out. I’ve got another week or two before I start losing chunks, and I really don’t want to have hair everywhere. I picture myself as a progressively less hairy PigPen, wafting clouds of drifting hair behind me. Ewww. Just ewww.

After my first cancer diagnosis, I talked about getting a dragon tattooed on my head, because dragons have always been a protective symbol for me (and my friend Cathy hand-drew a henna tattoo of an awesome Chinese dragon on my bald skull, after waxing the skull first. Ouch.). The idea that I wouldn’t ever get cancer again because of the protection was tempting, but once my hair started growing back in, I just decided not to do it.

Then, of course, I got cancer again. That time, I was so emotionally and mentally acting like an ostrich that I couldn’t even have fun with the bald skull. I kept the stubble down, and that was about it.

This time, I’ve decided that at some point in a treatment break that I’m going to get a tattoo on my skull. But I’ve decided that now, instead of a dragon, it must be a phoenix.


Finally, the Vacation Post

It was awesome!

We had a wonderful time, with wonderful friends, and any doubts that I had about going to Disney World as an adult were silenced after the first couple hours.

Of course, that might be because I am such a child in some ways (some might say immature, or juvenile) – but it was just plain fun.

We rented a house in Kissimmee, which is just south of Orlando proper, and it was only about 15 minutes from Disney World. It had a pool, and a pool table – really much nicer in some ways than a hotel – much quieter, and since we shared it with our friends Peter and Nanette, it was a lot more affordable than a hotel. The worst thing I can say about it is that we had to buy toilet paper (one roll per bathroom provided – 4 people for a week? Not!).

Brian and I arrived on the Saturday evening, and got settled in – we’d thought about going to Universal Studios theme park on Sunday, but ended up lazing around floating in the pool and just goofing off. Peter and Nanette drove down from Atlanta on Sunday, and arrived in the late afternoon. We had dinner and then went grocery shopping for breakfast and miscellaneous stuff.

We spent one day each at four parks – Epcot, the Animal Kingdom, the Magic Kingdom, and Hollywood Studios. They each had their own charms, and each day we spent pretty much the whole day at one of the parks.

My favorite part of Epcot was the Mission: Space ride, and even though we were there from 9:00 am until after the fireworks at 9:00 pm, we didn’t get to see everything.

The Animal Kingdom was my favorite park overall – we started with the Kali River Rapids ride, walked a couple of trails, had lunch, ran to the Dinosaur ride (this is in the high heat/humidity, and Brian with a knee that is due to have surgery a week-and-a-half later), walked more trails, rode on the Safari ride, watched the parade, took in the Bug’s Life 3D movie, and shopped. The Expedition Everest ride was out of service, so we didn’t get to ride it, but there was so much else to do, it was not missed. This park closes at 5:00 pm, so we actually had an early day – went back to the house and cooled off in the pool, went to dinner, played games. Stayed up way too late, but having fun doing it.

The next morning I woke up with a migraine – Brian, Peter, and Nanette went on to the Magic Kingdom without me, but Brian came back in the afternoon and picked me up. We hit a lot of rides and shows, and stayed for the parade and fireworks – the fireworks here were incredible – there were some things I’ve never seen before. Getting out of the park was bad – I was actually surprised, because based on our experience with the other two parks, Disney really knows how to move people. We never had to wait for a tram or had any delay getting out of the parking lots at Epcot or Animal Kingdom – the Magic Kingdom, however, failed to magically whisk everyone out and there was a major wait just to get onto the monorail. We opted to take the ferry, and it was only a little better. When it’s still sweltering hot and your feet hurt, there’s the potential for a major meltdown (surprisingly, we saw very few children going through that, and no adults ;-} ).

The next day was my absolute favorite day of the whole trip. We went to the Kennedy Space Center, and took a tour of NASA. We got to see the shuttle launch pads, the Assembly building (where they put the shuttle together with the rocket boosters), see a refurbished Saturn V rocket, one of their space museums, and walk in a retired shuttle. I grew up reading science fiction, and hearing and watching rocket launches – the only thing that would have been better (besides getting to go into space, of course) would have been seeing an actual launch. Someday!

Afterward we went to the beach – it was great walking in water that was warmer than the pool at our rental house, and I picked up a few shells, and we all tracked sand back to the car.

Our last day we spent at Disney’s Hollywood Studios. Great stunt shows, lots of other fun shows, and the most awesome rides I’ve ever been on. We rode on the Star Wars Star Tours ride, and I thought it was really great. Then we went on the Tower of Terror, and I thought it couldn’t get any better (free fall? yeah!). Then we went on the Rock’n Roller Coaster, and wow! I was blown away. Best roller coaster I’ve ever been on. Going on the Star Tours ride again was incredibly tame after that.

The weather was not cooperative at all. We’d chosen October because normal temps are around the mid-80s, and I don’t really do very well with heat above that range – it brings on migraines.  And since we were going to be outside most of the time, we wanted to try and hit weather that wouldn’t be overwhelming for me. So what happens? Orlando has a heatwave the week we’re there – mid-90s, 70-90% humidity. I was amazed (and extremely pleased) that in spite of being uncomfortably hot and sweaty, I handled the heat just fine. All in all, one of the best vacations I’ve ever been on.


(p.s. Robin spent the week at the “Daisy Hill Puppy Farm” – the breeder we got him from puts him in with her dogs, and he gets to enjoy being a pack dog again – but he was very happy to see me when I picked him up, and then we had other sheltie adventures on the way home – that’s another catch-up post).


Catching Up

We’ve been doing a lot recently – some fun, some not so fun, but nothing bad ;-}

Most importantly, Brian had knee surgery yesterday, and everything went fine. He’s walking around no problem, and is ready to try dropping the prescription pain meds and going over to acetaminophen or ibuprofen. The surgeon came out to talk to me after he was done, and said that Brian’s torn cartilage was some of the worst he’s ever seen – he couldn’t believe that Brian had been able to go so long without having surgery. I said “Well, only since June . . .”, and the surgeon said “Oh, no, it’s been damaged for years – the torn edges were rounded from long-term rubbing together. There was some newer damage that must have been from June, but I was able to trim everything up so his knee should work better than it has for a long time.”

Brian vaguely remembers a backpacking trip back in his 20s where he twisted his knee, but kept walking on it (didn’t really have a choice). It was painful at the time, but not incapacitating. Either he’s completely impervious to the kind of pain that the surgeon expected him to have, or the damage was situated such that it was not interfering with the movement of the joint, and thus not causing a lot of pain.

In addition to the torn cartilage, there is a worn area, but the surgeon felt it wasn’t a problem; and the anterior cruciate ligament is partially torn. My understanding is that it will stay partially torn, but that it should continue to function just fine unless he does something that causes it to tear completely.

Brian doesn’t remember anything specific he did in June to cause further damage, although he was doing some planting in the backyard which involved kneeling, and it was shortly afterward that his knee started bugging him. He ignored it for a while, and it seemed to get better, but then it would get painful again and he would ignore it again until it seemed to get better, and so it went for two months. Finally, he realized that it was not just going to go away before our trip to Orlando; so he went to see our pcp, who sent him for x-rays and an MRI; then referred him to the surgeon. We were concerned that the surgeon would tell him he needed to be on crutches, or even cancel the trip – can you imagine doing Disney on crutches? Instead, the doctor just pulled an ounce or so of fluid off the knee (said it was about 1/3 of what was in there), and gave Brian a cortisone shot. With ibuprofen, Brian had almost no problems with the knee on the trip (about which I’ll write in another post).

So all’s well with Brian and his knee.


The Magic Kingdom

Orlando, 7:15 p.m

Looking out the taxi window, on one side a vibrantly gorgeous sunset, all oranges, golds, and a few dark clouds for contrast; on the other a full moon in a deep purple and blue sky.

I’m so tired that it takes me a while to notice that the view out the front window doesn’t match. Drab grey clouds and smoggy yellowish sunset.

Tourists get the window tinting that turns the world beautiful, drivers have to deal with the world as it is.

Truly the Magic Kingdom, for some.


September 1, 2008

Ah, Vacation!

The surgery on Friday the 22nd went well, the surgeon got clean margins, and gave me drugs for pain, nausea, and potential infection.

My chest is beginning to look like the Nazca Plains in Peru.

Travel went well, with Brian doing all the driving down.  We stopped in Corning on Saturday evening, and visited with my Dad that night and the next morning; drove to Vacaville, where we had a party with Brian’s family.  Monday we drove up to the cabin, had a lovely, relaxing week; and reversed the trip yesterday.  I even drove some this morning, although I slept most of the way home – I didn’t even notice the cat climbing on my lap from the footwell, or jumping back down.

More about vacation later, just wanted to thank everyone who wrote, called, posted, etc., for the love and support – we meet with the oncologist tomorrow morning, so I presume I’ll find out about whether I’m doing chemo or not this time.  Then we meet with the surgeon to follow up on the incision – if I’m not doing chemo, then I’ll probably be starting radiation soon.

I’m actually going to go to bed shortly, in spite of having slept so much of the way home.  I’ve got an early day tomorrow, and pretty much the rest of the week.  I’ll update as I can.

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