Well, so much for blogging on a regular basis!
In fairness to myself, I've barely had a moment to post until now. For most of the second half of February, I was out of the state. I've also been extremely busy getting ready for my wedding on April 11th, not to mention working at both jobs, and ... well, better late than never for an update!
So what's been going on since my last post?
-To begin with, February 10th marked my final radiation treatment (at least for now). My feelings about this radiation were mixed. On the positive side, I have nothing but good things to say about the staff at Radiant Care. The technicians, nurses, and my radiation oncologist were all extremely nice people. I learned more about my disease from Dr. Hartman in one consultation than I did from a lot of other people I've encountered in the medical world. When I left Radiant Care on my last day, I was given hugs and gifts and told by virtually everyone on the staff to have a great time at Disney World (and to "say hi to Mickey").
Unfortunately, a month later I have to say that it doesn't really seem like radiation
did much for me. I'm hoping that it stopped the spots on my spine and pelvis from growing -- only scans will show if this is so, and Dr. Hartman said it might take a couple of
years to know for sure. So maybe the treatments will prove worth it in the long run.
However, the
other purpose of radiation was to alleviate pain -- and, pain-wise, I can't say I notice any difference now than from before I started the treatment. I had minimal pain before radiation, and I have about the same amount of pain now. It still hurts if I lie on my back for too long. Seriously, I can't complain
too much, because I know I'm way better off than a lot of people! But if radiation was supposed to take care of my pain (mimimal as it may be), it ... well, didn't.
To top everything off, I now have an ongoing
new pain, this time in my right arm. I've noticed it for about a month now. It feels like a bruise (though there's no bruise visible) and usually lingers somewhere around my elbow -- occasionally, I feel it in my lower arm, too. Actually, I doubt this new pain has anything to do with radiation (so don't ask me why I'm rambling about it right now) but I'm hoping it's not a sign of new metastes. Luckily, I've heard that "arm mets" are extremely rare. Whatever it is (lymphedema, perhaps?) I hope I can find the source of it after my next scan!
Anyway, back to radiation. There's one thing I know it
did do for me, and that's lower my blood counts. I honestly had no idea this could be a side effect, and unfortunately I found out about it just a little too late. More about
that in a moment. But first...
-On February 14th, I left with my mother, sister Angie, brother-in-law Doug, and nephew Cooper for our long-awaited trip to Walt Disney World! This trip was something my mom promised me on the day I was diagnosed with mets, and I'd been looking forward to it ever since. Originally my dad was supposed to go with them, but he graciously offered me his seat on the plane (actually, he insisted; although he's a fan of Disneyland, and may have been looking forward to seeing Disney World, he is
not a fan of flying). I'd only ever been to Disneyland myself, and not since 1995, so I was curious about Florida's version of the Magic Kingdom ... plus, well, a free trip! I honestly wish my dad and I could have
both gone, and Merwyn, too. But Merwyn had to decline because of work -- and like I said, my dad insisted that
I go instead of him.
So, on Valentine's Day, Angie, Mom, Doug, and Cooper and I spent a long day flying down to Dallas (where we had a three-hour layover) and finally over to Florida. We got to the Orlando airport at about 9:30 pm Eastern time, and rode a Disney bus over to our hotel. We stayed at the Port Orleans French Quarter, which is one of the "moderate" Disney resorts. It's a thorougly charming, New Orleans-themed place, with crocodile statues out by the pool, jazz music playing in the lobby, a cafeteria that serves Cajun food, etc. I liked it a lot, and definitely recommend it the next time you're planning a Disney getaway!
My mom and I spent an hour or so that night down in the lounge, listening to a guy play jazz and soul covers, while Doug and Angie put Cooper to bed. The next day, all five of us set out for the Magic Kingdom!
It was a truly fun day, and it felt great to be back in a Disney park. I rode a lot of my old favorite rides from Disneyland, plus discovered some new attractions (I
loved "Mickey's Philharmagic" and thought the Carousel of Progess was rather charming itself). I also enjoyed spending the day with Cooper. That saying about "go see Disney through a child's eyes" -- how that supposedly makes things more special -- was actually kind of true. It was fun to see the park with a four-year-old, even though Cooper was for some reason scared to
death of the costumed characters (which at least saved us some time -- we didn't have to stand in line waiting for their autographs!).
Cooper (stereotypically) LOVED the Dumbo ride, and wanted to go on it again and again. But I didn't mind at all; I'm secretly a fan of those rides that go round and round in circles myself, even though I know most of them are for kids (I think they're breezy and peaceful). Between Dumbo, Aladdin's Magic Carpets, Tricera-Top Spin, and the Astro Jets (or whatever those spinning rockets in Tomorrowland are called) there are certainly enough of those rides at Disney World!
Anyhow, we spent most of Sunday at the Magic Kingdom. Then, on Monday, it was time for Epcot Center. At first, the rest of my family seemed a little disappointed in Epcot; I think a lot of this was because World Showcase isn't really set up for kids. But I liked it right away,
especially World Showcase. They even had a little corner set up to look like Norway, complete with a boat ride called the Maelstrom, which was lots of fun!
After we moved on to Future World, the others seemed to warm up to Epcot. There were more rides and play areas in this "world." Cooper cried during the "Honey, I Shrunk the Audience" 3-D show (which
was pretty bizarre) but he enjoyed "Turtle Talk With Crush" (which was pretty funny!), the Finding Nemo ride, Journey Into Imagination, etc.
Eventually, we ended up back in World Showcase, where we ate dinner at a Mexican restaurant, watched some acrobats perform in the China section, and went on this cute boat ride featuring Donald Duck. We also did some shopping. Doug and Angie kept persuading me to try to go back to Future World and get in line for "Soarin'", but the line kept saying it was 90+ minutes (and all the Fast Passes had long since been handed out). Finally, at the end of the night, we saw that the line was "only" 45 minutes so we decided to give it a shot. And it was
definitely worth it. For one thing, the line moved faster than we expected. Plus, the ride was awesome! Short, but awesome. I still think it was my favorite ride in all four of the parks.
I wouldn't have minded going back to Epcot, but on Tuesday, it was time to head to Animal Kingdom. (Little did I know that this would turn out to be the last "normal" day of my vacation.) I enjoyed the park a lot, though admittedly not as much as I enjoyed Epcot and the Magic Kingdom.
We spent most of the first part of that day walking around trails and looking at various animals; it wasn't much different than a visit to Woodland Park Zoo, but it was fun. At one point, we ended up in this building (Conservation Station?) where Cooper had an unfortunate run-in with a guy (girl?) in a Jiminy Cricket costume. After he calmed down, we moved on to a petting zoo, where Cooper, Doug, and my mom had fun brushing goats, while Angie and I watched a demonstration featuring a parrot and a snake. Then it was time for the Kiliminjaro Safaris (where we snapped about a million pictures), and then lunch at the Flame Tree Barbecue restaurant.
During the afternoon, Angie and my mom wanted to go on this creepy-looking roller coaster. Doug and I are NOT roller-coaster fans (I can't go on them anyway because of my back) so while they had their fun on Expedition Everest, we took Cooper to this area called DinoLand U.S.A., which was for some reason set up to look like a tacky 1950's tourist trap. The area seemed kind of out-of-place with the rest of the park, but I like that sort of (tacky 50's) thing, so I enjoyed it. This land is also where we found Tricera-Top Spin, the dinosaur version of the Dumbo ride. (Cooper rode it about three times.)
After reuniting with Angie and my mom, we ended the day by exploring the "Tree of Life", Animal Kingdom's centerpiece. I loved all of the flamingos lingering in the nearby water. On our way out of the park, we happened to see Mickey, Minnie, and Goofy dancing around in the back of a truck -- gasp! -- but since they were enough of a distance away, Cooper didn't seem to mind them. I think he even waved at them!
That night, I stayed up late watching cheesy Lifetime movies. The next morning, I woke up with a rather unexpected headache, a deep cough, and an overall crappy feeling. Angie took my temperature. It was 102 degrees! I wasn't sure what to do; I didn't necessarily want to lie around in the hotel all day, but at the same time, I
really didn't feel up to traipsing around any of the parks. I finally decided to take a nap, and told the others to go on, that I would catch up with them later at Hollywood Studios. Before I went back to sleep, I drank a ton of water and tea, and popped some Ibuprofen.
Indeed, when I woke up an hour or so later, I felt much better. Not great, but good enough to ride the bus over to Hollywood Studios. When I walked through the entrance, I immediately thought it looked like a fun park, and was sorry that I'd already missed half the day being sick. Oh, well. I called my mom on Doug's cell phone, but they were in the middle of some attraction -- so when I saw that the Great Movie Ride had virtually no line, I decided to go on it by myself. (I loved it!)
After the ride, I caught up with the others. Angie suggested separating (I think she was afraid of Cooper catching whatever I had, which was understandable.) But before they went off, Doug suggested that I go to Guest Services and pick up this card that would allegedly let me onto rides and attractions with minimal to no waiting time. Kind of like a permanent FastPass. Basically, I had to play the "cancer card" to get this other card -- but I didn't mind asking for it, particularly since (along with feeling sick) my stupid arthritic knees had been bothering me since the night before. The woman at Guest Services was very nice and gave it to me without bombarding me with a third degree on why I needed it. And the card worked! From that point on, we walked right onto almost everything. I kind of wished I'd picked one of those cards up earlier in the trip.
So I spent the rest of that day hanging out with my mom. We rode through the Great Movie Ride (I didn't mind going on it again), ate lunch at this ABC Commissary place, and then went to several shows, including that brand new "American Idol Experience" (which was cheesy, but entertaining), and live versions of "Beauty and the Beast" and "The Little Mermaid." The one line my new card
didn't work on was "Fantasmic!" It took at least half an hour to squeeze through this VERY crowded and slow-moving line to get to that show. In the end, the show was pretty spectacular, but I have to say that line was one of the more nightmarish ones I've been stuck in.
All in all, with the help of Ibuprofen and Oxycodone, I made it through that day feeling more-or-less fine. Later that night, my mom and I rode a ferry to Downtown Disney and ate dinner at Planet Hollywood, which was a little reminiscent of the "Fantasmic!" line (ridiculously crowded, but entertaining in the end).
But the next morning, I woke up feeling under the weather once again. My temperature wasn't as high as the previous morning (it was 101 point something) but I felt nauseous (from the Oxycodone or something else, I wasn't sure). I
almost left for the Magic Kingdom with everyone else, but at the last minute, I decided to try and "sleep off" whatever was ailing me.
Once more, I took a nap, and once more, I left the hotel around noon, feeling at least well enough to try to have some fun in the park. I caught up with the others, who were over exploring the Grand Floridian, this very fancy hotel that I recognized from some stupid episode of "Full House" where the cast went to Disney World (and of course stayed there). After we "oohed" and "aahed" at the hotel, we rode the monorail back over to the Magic Kingdom. For an hour or so, it was all five of us, but Doug, Angie, and Cooper ended up separating again for awhile. My mom and I enjoyed a few rides, and lunch at the Columbia Harbour House. We reunited with the others long enough to explore most of Tomorrowland. By the time we finished with that, it was already nighttime. Mom and Angie wanted to go on Splash Mountain; Doug and I decidedly did
not want to go on Splash Mountain, so we (and Cooper) tried to watch for their turn down that big drop (we missed them).
Ultimately, Doug and Angie decided to take Cooper back a little early that night, so Mom and I had another hour or so to ourselves. We re-rode "It's A Small World" and decided to go on "Stitch's Great Escape", which was the one ride we'd missed earlier in Tomorrowland. That ride tends to be VERY poorly reviewed by Disney fans, but we thought it was kind of cute.
Afterward, we planned to do some shopping on Main Street. My mom wanted to buy me a Disney watch. It was late, and still a little rainy outside (the weather wasn't the greatest during our trip) so I told her we could do some shopping tomorrow, since it was our last day at the park. Oh, if only I'd known...
We caught our bus back to the hotel just as the nightly fireworks show was coming to an end. I didn't know it yet, but a sea of red, green and blue sparks trickling down into the sky turned out to be my last vision of Disney World.
The next morning, I woke up with my oh-so-favorite, hot, nauseated, coughing, overall crappy feeling. I'd felt fine walking around the Magic Kingdom the day before, but whatever was wrong with me was back in full force that morning. Angie took my temperature again. This time, it was 103! I could hear Angie, my mom, and Doug discussing me over in Doug and Angie's adjoining room. Angie pointed out there was some doctor's office on the Disney World grounds and she suggested I go there to get looked at.
Eventually, my mom ended up down in the lobby, where she apparently made some phone calls. The next thing I knew, some guy from concierge called up to my room and put my mom on the phone. She told me that the Disney medical place wouldn't accept my medical card, but that a local hospital would -- and, that after hearing my symptoms, the admitting nurse thought I should be seen. Oh, yay! So I had just enough time to change my clothes, comb my hair, and brush my teeth. Then I grabbed my purse and met my mom down in the lobby, where we rode this taxi over to a place called Celebration Health hospital.
My mom assured me we should be back at the Magic Kingdom by 1 pm, but I've been in enough Emergency Rooms to know that we'd be at that hospital for several hours. It was already past 10 AM, and to be back in the park by 1 seemed
very unlikely. Sure enough, while I got sent back to a private room right away, I ended up just lying there on a bed for at least two hours doing absolutely
nothing. Well, nothing except for watching "Little House on the Prairie" and "7th Heaven" re-runs. And listening to the nurses lecture this woman down the hall who'd called 911 (!) because she thought the nurses were taking too long to help her.
Finally, just as I was starting to think that woman might have had the right idea, a very nice doctor came back to my room, introduced herself, and ordered a series of tests. To the hospital's credit, once they got going on the tests, they moved pretty fast. I had to have a chest X-Ray, some bloodwork, and some throat culture done.
I honestly don't know what I expected to be "wrong" with me -- I thought maybe bronchitis? -- but both my mom and I were positive that,
whenever we were allowed to leave, they'd give us a prescription for some antibiotics and we could pick them up and go enjoy at least a couple of hours in the Magic Kingdom. Both of us were caught VERY off-guard when the doctor returned and told us the news. Not only did she find "some pneumonia" in my chest X-ray -- apparently my white blood cell counts were also very low, around 2.4. This was most likely due to radiation; though, until that moment, I had no idea low blood counts were even a
side effect of radiation.
Because of the combination of the low counts and my fever, the doctor strongly suggested that I should be admitted to the hospital. So my mom was faced with the stressful task of rearranging our travel plans, since we obviously wouldn't be flying home the next day! (Fortunately, she'd bought travel insurance, but it was still a LOT of phone calls and paperwork for her...) Meanwhile, I got to spend the next three days cooped up in a hospital bed. Talk about FUN!
Actually, being hospitalized in a different state would have been some dream-come-true when I was a kid (I was a very weird child, who
wanted to be sick ... I think because my siblings and I were often showered with toys and attention whenever we were the slighest bit sick, plus there were those days off from school...) As an adult, though, being hospitalized wasn't much fun at all. For one thing, I had to spend the next several hours stuck in that same bed in the ER, while they waited for another bed to open up. My nurse was very nice, but I didn't want to fall asleep or get too comfortable because I knew I could be moved any minute. (Also, my mom was there, and I don't like the thought of people "peering" at me when I'm sleeping.)
For another, the needle they jammed in my arm for the IV (they started my cocktail of antibiotics while I was still in the ER) was just the first of MANY needles that weekend. Have I mentioned that I hate needles? I also hadn't had a chance to shower that morning and I already felt VERY grungy by the end of the first day.
At one point, before they moved me up to my room, this very kind pastor/chaplain visited my mom and I, talked with us for awhile, and prayed with us. At least
that was nice. The same pastor visited me at least once a day for the next three days. He never did run into my mom again but -- not counting my doctor - -he turned out to my only daily visitor besides my mom (and now, interestingly, he's my Facebook friend). Now that I think about it, though, who else was supposed to visit me? Mickey Mouse? I was 3000 miles from home!
Anyway, they finally moved me to a private room at around 10 pm that night. It was in the Intensive Care Unit, but my nurse assured me that I didn't
need to be in ICU -- this was just the only available bed. She, too, was a very nice nurse, and let me freshen up in the shower. I was happy to see there was a computer in the room, right over my bed; it didn't work very well, and Facebook was blocked, but at least I got to check my email! My poor mom went back to the hotel to make some more rearrangements (Angie, Doug, and Cooper were still flying back the next day as planned) and catch up on some sleep, while I spent the rest of the night surfing around online.
It wasn't very easy to sleep in that hospital bed, and it didn't help that two different nurses came into my room in the wee hours of the morning -- one to do some stupid bloodwork, and the other to make me drink this horrid stuff called "liquid potassium", since apparently my potassium was "a little low." She mixed it with water. I chugged it down as best as I could while thinking,
Finally, something to give barium sulfate solution a run for its money in sheer nastiness! I had to drink some MORE of it the next night, but this time, the nurse mixed it with orange juice, which made it at least slightly more palatable.
The next day, Saturday, was my least favorite of the three-and-a-half days I spent in the hospital. That afternoon, they moved me down to a room on the floor below. While I didn't exactly
want to be in ICU, I much preferred my bed and the nurses up there to my new room. The Saturday nurse on this new floor (who I was "lucky" enough to also have on Sunday) and I ... well, we did not get along. I think she was annoyed with me because my IV machine kept going off. Like that was my fault. Seriously, though, the IV would get twisted or something, and the machine would start going
beep-beep, beep-beep -- so I'd push my call button for her to come fix it. Ten minutes later, no one had come, so I would call again. (That beeping was enough to drive a person crazy!) Finally, she would come into my room, fix the beeping, and leave -- then the thing would seriously start going off again, not five minutes later.
Beep-beep, beep-beep ... UGH!
I had other issues with that nurse besides the problematic IV. Also, the computer in my new room didn't work at
all. On top of all this, we found out on Saturday that my counts had for some reason gone down even
more. They were now something like 1.2. We knew they needed to be up in order for me to be released, so the possibility of a loooong hospital stay seemed scarily real that day! Among other things, I was genuinely afraid that I'd end up missing the Young Survivors Coalition conference in Dallas, which was less than a week away; for all I knew, I'd still be stuck in that very bed by the time the conference started.
Fortunately, there was an easy enough solution to the low blood count problem ... neupogen shots! I'd had plenty of these shots during my first round of cancer treatment (I once had them every
day for a three-month period) and I welcomed them if it meant getting out of this hospital! Later that afternoon, my "favorite" nurse administered the first one, and to her credit, it didn't even hurt very much.
My mom went back to her hotel early that evening (she'd since moved to one much closer to the hospital). I spent most of Saturday night sleeping; and despite that annoying IV machine going off a few more times, and my wee-hours-of-the-morning bloodwork and potassium drink, I somehow managed to sleep fairly well.
The next day, though, it was back to the same old anxious feeling of
when-the-heck-can-I-get-out-of-here? But this time, thank goodness, it was much more short-lived. My doctor came into my room that afternoon and told me that I'd had some low fever at midnight ... BUT that my counts looked much better. He told me that I'd get another neupogen shot that day -- and if I could make it through the day maintaining a temperature of 99 or less, I could go home the next morning!
Needless to say, my mom and I were both very happy to hear this. We "sneakily" conspired that I should do things like take Tylenol shortly before they took my temperature, to keep the fever down (I was honestly feeling much better by this point and probably didn't even need the Tylenol, but I took it anyway!). I felt pretty confident that this would be my last night at Celebration Health and was able to relax for most of the rest of the day.
The only problem was my stupid, stupid IV machine. It was still beeping like crazy. Finally, a nurse came in to just give me a new IV; but after poking me in the hand once, she decided my veins weren't big enough and was like, "oh, well" and left.
My "night nurse" was this nice British lady who already knew I was likely going home the next day; she was ready to just forego my last dose of antibiotics (to give me a break from the IV machine). But the "head nurse" decided against this and came in herself to try to find a vein to put a new IV in. No such luck. I got to be poked some more (I STILL have a visible bruise on my arm from her efforts!). All of this was going on while I was trying to watch the Oscars in peace! The nurses tried to be nice and laid-back about it, but I was still a little annoyed as they watched along and casually made such comments as "Is that Madonna?" (no, it was Kate Winslet) while simultaneously jamming a needle into my arm two or three times in a row.
At long last, the dang IV started
leaking -- I looked down at my elbow only to see BLOOD flowing onto my sheets! I started to kind of freak out over this, and the nurses (who were just standing there watching the Oscars) just "laughingly" told me to relax, that it was "just" blood and water. Fine, but it was
my blood -- and I certainly didn't want it all over my sheets! They finally took the IV out, and changed my sheets. I ended up with some new IV in my hand. It hurt getting put in there, but at least it turned out to be much less problematic than the last one (it "only" set the machine off once).
That night, I did my best to sleep. I had to have yet another needle jammed in me when they took my blood for 3 AM labs; fortunately, I didn't have to drink any potassium this time around.
The next day, my mom came back; and shortly after that, the doctor came in to my room and announced that it was "time to go home." Hooray! We still had a lot of paperwork to fill out, and my mom had to start making calls right away to get us our flight home. But we were out of the hospital ... more or less. Before we left, I was able to take a shower, and change into my real clothes (no more too-big hospital gown!). My mom went down to fill my prescription for Amoxicillin; while she was down there, Pastor Wamack and a volunteer came to my room to say goodbye and wish me well. Then I signed some forms with my oncologist's information back home. Finally, this guy in a wheelchair came to wheel me downstairs. It was the first time I was able to see the rest of the hospital that I'd been cooped up in for the past three days. It was HUGE! And kind of pretty (for a hospital), although I was certainly ready to leave it.
Mom and I rode a taxi back to the Howard Johnson in Kissimmee, where she'd been staying the past couple nights. It was about a mile away from the hospital. We weren't sure when they'd be able to put us on a flight and figured we'd be in Florida another night. The neighborhood looked sort of interesting, so I didn't mind; I was ready to do some exploring after being stuck inside for so long! My mom even hung up some changes of clothes for the next day; but just after she finished doing so, her travel agent called and said she could put us on a 5 o'clock flight. Mom was more than ready to leave, and I couldn't blame her. (This whole ordeal had to have been worse for her than it was for me.) I had just enough time to duck over to the little store next door and buy some last-minute souvenirs.
We rode a taxi back to the Orlando Airport; our driver was extremely chatty, and even gave us a "personal tour" of some of the landmarks along the way. Once at the airport, we had just an hour or so to eat some lunch, then we were on the plane and FINALLY on our way back home.
The first flight, from Orlando to Dallas, wasn't too bad; it was just my mom and I in our row of seats. We listened to music and looked at each other's pictures (I managed to snap a lot of them before I got sick). The second flight, however, from Dallas to Seattle, was one of the worse flights I've been on in recent years. I was stuck between two people, with my mom in the seat behind me (also stuck behind two people). The plane was VERY crowded, many people kept blabbing, and overall, it seemed like it would never end. But after four and a half hours of this, it was over. We were meeting my brother in the airport ... and yes, it felt very good to be home.
A lot of people have asked me if the Disney World trip was ruined because of my hospital stay. The answer to that is no. I honestly had a blast at Disney World! Even the two days where I felt bad in the morning, I somehow managed to feel fine throughout the afternoon and evening. I'm just sorry I missed those two mornings, and particularly sorry that I didn't get to see as much of Hollywood Studios as I would have liked. But I enjoyed every minute that I
did get to spend in the parks! As for my hospital stay, it almost seems seperate from Disney World. I don't think of it as part of my vacation, but rather a separate incident that just happened to take place in Florida.
-Well, after all that fun in the Sunshine State, two days later I found myself back in Olympia, at my oncologist's office. That day, Dr. Ye followed up on the pneumonia; he took some blood and did another chest X-ray. The X-ray showed there was a small bit of pneumonia still hiding in my chest, so Dr. Ye gave me five more days' worth of amoxicillin "just to be safe."
That Wednesday also happened to be the day of my first Lupron shot. Actually, he called it an "Elligard" shot, but I guess it's basically the same thing. How was the shot? HORRIFYING! It was so bad it deserves its own blog post, and it will surely be the subject of my next one!
-Two days after my doctor's appointment, I was back on a plane, flying down to Dallas for the YSC conference. Yes, I made it there after all! The conference also deserves its own post, so stay tuned for that one, too. In short, the conference was fun and informative, and I'm hoping I can make it down to next year's conference in "Hotlanta", Georgia...
***
Some other things coming up that I may or may not blog about: a visit to the Seattle Cancer Care Alliance (finally!), and a treatment day from h*ll coming up on the 26th (which will include another dreaded Elligard shot,
plus bloodwork
and my first Zometa infusion; I've heard some horror stories about how that particular drug makes one feel, but if it helps keep my bones strong, I'll grit my teeth andtake it!)
