Monday, June 27, 2011
I actually tried to make this a much more detailed post with a bit of background on what I've been doing since the last time I posted here (going on two years ago!). But as soon as I hit 'publish', my computer had an "Internal Service Error", and my first draft of this blog entry seems to have been lost for good. Sigh.
(I thought Blogger "autosaved" stuff?)
Anyway, I do want to point you in the direction of something I'm working on. A seed of an idea buried in my mind for a LONG time is now finally starting to blossom into a full-fledged project! You can read more about it here.
After you're finished reading, now I'm going to ask for your help.
If you feel inclined/inspired, please consider backing my project with a pledge. ANY amount is sincerely appreciated!
Or, another quick, easy way to help (that I would be just as grateful for) is by sharing the link on your blog or Facebook wall. Several people have already done this and by re-posting, they piqued some others' curiosity... and some of those friends-of-friends even made a pledge. It really does help just to spread the word!
With your assistance, I'd love to see this succeed. You'll be sincerely thanked ... and rewarded. :)
Right now, thank you just for reading and considering!
Meanwhile, as for my actual back (as in, the body part) --
That spot on my spine is still showing up on scans, BUT it hasn't shown any sign of activity since ... basically, since it was first discovered! In the cancer world, we call this "Stable Mabel." Let's keep our fingers crossed that Mabel hangs around for a looooong time -- the only exception being, she can go away for awhile if she sends her friend Ned to take her place. (Ned is better known as No Evidence of Disease.)
Tuesday, October 6, 2009
To say "I've been busy" since I last updated this blog would be a major understatement, but here are some of the highlights of the past seven months:
-First, on the health front -- almost immediately after I wrote my last entry, I "fired" my oncologist, and moved on to Seattle Cancer Care Alliance. I didn't hate my former oncologist, but I wasn't comfortable with some of his decisions (and really didn't care for his reaction to my "second opinion" at SCCA). So I decided to switch docs. I'm happy with my decision. It's a nice change of pace having a woman oncologist; plus, SCCA has a great reputation, so I feel much more confident under their care.
My treatment plan remains the same. Actually, on that note...
I just started a new journal at CaringBridge, and from this point on, I'll be posting my health updates there. To be honest, I prefer CaringBridge to Blogger (I especially like my page there, which is all pretty and sunflower-y). However, their site is specifically set up for those of us with health issues; and I feel kind of funny using their space for random posts (even though it's probably just fine). So from now on (at least on those very rare occasions when I actually have time and motivation to "blog") CaringBridge will be my "cancer journal", and Auntie Tammy's Naked here will be used whenever I feel like writing about my other life experiences! (I guess that makes this blog title even weirder, but oh well.) You can find a link to my CaringBridge page over in my sidebar.
-Meanwhile, speaking of "other life experiences" ... on April 11th, I got married! Someday, I really need to write about it in detail. But for now, I'll just say that I was lucky enough to marry my best friend -- and our wedding day was honestly the best day I've ever had. Many of our family members and friends were in attendance (one of our favorite bands played the reception). Cheesy as it might sound, we were surrounded by love that day. I don't think we could have asked for a nicer wedding, and I'm extremely grateful to everyone who helped us put it together! Since then, Merwyn and I have been enjoying married life ... it's similar to our pre-married life, yet there's something just a little bit different and special about being "husband and wife." I can't quite put it into words, but it's definitely a good feeling!
-From May 14th through May 29th, my new husband and I were busy honeymooning ... in Europe! Not just in Europe, but in Norway!!! Some of you who know me may know about my fondness for Norway (and Scandinavia in general; I sometimes host an all-Scandinavian-music radio show). I never thought I'd make it over there so soon, but thanks to my loving parents (all four of them) and some generous wedding gifts, we were able to enjoy about five days in Norway, plus several days in the Netherlands and Sweden, and an overnight stay in Copenhagen. Talk about a dream honeymoon! It was a fantastic experience. Norway was as beautiful as I expected, but each of the other countries was lovely in its own right.
That trip, like my wedding, deserves its own detailed post, and one of these days, I hope to write one. Until then -- some of the many, many high points of our honeymoon included: wandering around Amsterdam; meeting some new friends both there and in Friesland (about two hours north of Amsterdam), all four of whom were kind enough to give us tours of their area; hanging out with Julian Berntzen (one of my other favorite musicians) in Bergen (he gave us a private concert in his studio!); riding the train across Norway and Sweden; and meeting and spending time with my Merwyn's family (who are WONDERFUL) in the little village of Tuna, Sweden. Plus lots, lots more.
There was one bad point in the trip -- some weirdo in Bergen stole my camera (we're pretty sure it was the waiter at this restaurant we went to on our first night there; he was the only one in our vicinity when it disappeared) so I lost about three days' worth of pictures. That was sad, and frustrating. But it could have been worse. And other than the camera theft, everything else about our honeymoon was perfect. I can't wait to go back overseas whenever we're able. I have a long list of places to travel to, and Scandinavia is VERY high up there on the list.
-Which brings me to the actual title of this blog post. My travels this year didn't end in Europe. Quite the contrary! This past September, I spent virtually the entire month traveling across the United States, mostly by train. Many people have asked me why I did so; the simple answer is, it's something I've wanted to do for a long time. (Particularly since last year, when Merwyn and I incorporated the train into our Southwestern vacation.) My first-ever out-of-state trip -- back when I was 11 -- was via Amtrak (from Tacoma, WA to Disneyland) and I've had a passion for rail travel ever since.
In fact, immediately after the doctor told me I had mets, one of my first thoughts was it's time to take that train trip (though I "had" to postpone it for awhile, to travel to Florida, Dallas, and Europe. I know -- bummer, right?) So I spent this summer planning my itinerary ... and at the end of August, I finally hit the road!
This time, rather than just intending to blog about my trip, I'm going to make an attempt to (*gasp*) actually DO so. It was another incredible journey. I'm not sure my words will do it justice. In the span of four weeks, I managed to see about 30 states. I met an incredible array of people from all walks of life; I slept in everywhere from a closet-sized train "roomette", to a hip Brooklyn apartment, to a gorgeous Southern mansion. I posed in the Chelsea Hotel, heard a lost Elvis song, attended a beautiful memorial for a woman I never did get to meet (nevertheless, she touched my life, and countless others). I wandered into the South Bronx by mistake, and narrowly missed the Atlanta floods. I saw the Statue of Liberty and the Washington Monument and Lake Michigan and the church where Dr. Martin Luther King, Jr. used to preach. I was able to catch up with some old friends, and meet many new ones. And I spent some time with family as well as with several of my "survivor sisters." Seriously, when I think about everything I packed into those four weeks, it blows my mind.
Some of these experiences, I'd like to keep private for now; others, I'll write about in more detail. In short, though, if you've ever thought of a cross-country trip, I HIGHLY recommend it! (I hope this record of my trip might inspire you to plan one of your own.)
And now that I'm done with the world's longest blog intro, let me begin with ...
States #1-2 -- Washington and Oregon
Though my first train didn't leave until August 31st, my trip officially began on the 30th -- which happened to be my parents' 36th anniversary. It actually made for a fitting tribute to my folks, who in fact met on a Greyhound bus (and got married nine days later; beat THAT for a "couples meeting" story!).
My original itinerary called for me to take the Greyhound from Olympia to Portland. However, when my mother-in-law, Kathleen, heard about my plans, she and my father-in-law (George) got in touch with their good friends Sally and Bill, who live in nearby Aloha, OR (and who nicely agreed to let me crash at their place the night before my train took off). Kathleen said she and George would drive me down, and suggested a get-together and everything. I don't mind Greyhound, but I thought a road trip, dinner, and a chance to properly say goodbye to Merwyn and his parents sounded much nicer than a bus ride. So I readily agreed to the change of plans.
By the way, you've undoubtedly figured out by now that Merwyn was not able to come with me on this trip. Both of us would have LOVED if he could have come along, but sadly, he wasn't able to take the time off work. (As far as my own work goes, my "main" job is very flexible; I was even able to take my work with me, which helped a lot, income-wise. I did have to take time off from my "on-call" job -- I can't very well be on the radio long-distance -- though, fortunately, my bosses at the station seemed okay with this.)
It was really nice to be able to share at least the first leg of my trip with Merwyn and his parents. We left Olympia Sunday afternoon. I was supposed to do my radio show that morning, but didn't get much sleep the night before, so Merwyn played host on that week's Think Tank. He came home shortly after noon and made lunch; meanwhile, I had to say goodbye to Katie (my poor little Yorkie, who I think suspected something was "up", though she probably had no idea I was about to abandon her for a month). Then George and Kathleen picked us up, and we were on our way!
The ride from Olympia to Portland -- while nothing new in terms of sightseeing -- was a pleasant one. It's usually about a 3-hour drive, and we made good time (we made just one stop, at a rest station outside of Vancouver. I got a coffee and a peanut-butter cookie).
Actually, I take that back about the sightseeing. The route itself may have been familiar -- however, the Fabulous Thunderbirds air show was going on that afternoon, so on the way down, we were treated several times to the sight of planes beautifully swooping around, doing tricks in the sky. Which, I have to say, was pretty cool!
We made it to Aloha,OR around 4 PM-ish. I got to meet Sally and Bill for the first time, and felt comfortable with them right away. I also met their pets (the first of many pets I met along my route). They have a HUGE -- but mellow -- black dog named Hudson, and two Siamese Manx cats. (The Manxes made me think me of my sister, Missy.) One of the cats is full grown; the other is a mischievous little blue-eyed kitten (about 4 months old at the time) named Sammy, who spent most of the get-together inside, but kept me company a lot later that evening.
Sally and Bill have a lovely home, with an especially nice backyard (complete with a fish pond). The weather was favorable -- not too hot, not too cold -- so we spent the first couple of hours hanging out, chatting and enjoying some drinks and hors dourves, in their backyard.
Eventually, we were joined by Bill's family. I unexpectedly made a new friend in Bill's little nephew. While I like children and tend to get along with them well enough, I'm generally not the one that kids flock to in a crowd; however, my whole trip was an exception. Just about every kid I met along the way seemed to love me (perhaps because I was a houseguest, and therefore, a novelty? I don't know, but they were all adorable, and all in that especially fun age level -- around 1-5 -- so I got a kick out of it!) Anyway, Bill's nephew was the first kid to take a liking to me. He led me all around the yard -- and part of the house -- on a "color search"; first we had to point out everything red (his "favorite color") in sight, then everything green, then everything brown, etc.
Around 6:30 or 7, it was time for dinner. Sally, Kathleen, and Bill's sister-in-law spent a lot of time putting the food together, and they did a wonderful job. What a feast!! Two different kinds of salmon, potato salad, fruit -- and for dessert, a yummy vanilla cake with chocolate frosting!
(I'll write a lot more about food in future entries of this blog. Basically, there were a few periods during my trip where I managed to maintain my healthy eating habits; and there were many other points where I broke just about every "food rule" I have. However, throughout the four weeks, the topic of natural, healthy foods -- and alternative medicine -- came up so often, from so many different people, that I had to wonder if it was some kind of "sign." It was one of many recurring "themes" throughout my trip. Again, I'll have more to say about this later on.)
As for that night's meal, I guess it fell somewhere in the middle of the "health" scale. Healthy or not, it tasted GREAT!
Unfortunately, shortly after the meal, it was time to bid farewell to Merwyn, Kathleen, and George. It was getting pretty late, and they still had a 3-hour drive ahead of them. Saying goodbye was sad -- it felt really weird to know I wouldn't see my husband for a month -- but easier than I expected it to be. What can I say ... my excitement for the trip was building (and I knew that we would be in touch a lot)!
Bill's family left at the same time as Merwyn and his parents. So for the rest of the night, it was just me, Sally, Bill, and the pets. We had a quiet, relaxing evening. I spent an hour or two watching some TV and talking with Sally. I also got to watch the animals interact, which proved to be rather entertaining. The two cats don't get along so well, but it turns out that Hudson and Sammy are buddies. I have to tell you, there's nothing quite like watching a little kitten interact with a big black dog about 50 times its size. Sammy would follow him around, batting at him, and Hudson didn't so much as curl his lip! They reminded me of our old family pets, George and Chester (another dog/cat odd couple).
After Sally and Bill went to bed, I read for awhile. Sammy hung out with me during this time; he even curled up in my elbow and did "happy paws." (It almost made me want a cat.) Eventually, I started to get tired myself, so I let Sammy out to have the run of the house -- then turned out the lights in my room-for-the-night, and had a good night's sleep...
When I woke up the next morning, Sally was already at work, and Bill was (I think) running errands. I ate an oh-so-healthy breakfast of leftover cake, then got ready for the day ahead. In just a few hours, I would board the Empire Builder (the first of several trains, and my longest rail trip, at almost 48 hours). However, there were still a few things left to do before I left Oregon for Milwaukee.
First on the list -- before I "officially" left Portland, I had to go across the bridge to Vancouver ... then turn around and go right back to Portland! Talk about backtracking! Long story short, it was time to refill my Femara prescription -- and my insurance wouldn't cover it outside of the state of Washington. This was a bit of a pain, however, Bill did me a huge favor and VERY nicely drove me to the Walgreen's in Vancouver so I could pick up my pills.
After that little side trip, Bill drove me back to downtown PDX and dropped me off near Union Station, in front of a funky vegan restaurant/yoga place. I still had a few hours before my train took off, but I had plans to meet with my "survivor sister" Kim for lunch. She's one of the many girls I met along the route from YSC (the Young Survivor Coalition), my online support group.
Many of the YSC girls, I would be meeting for the first time ... but Kim and I had already met a few times. We'd had lunch in Olympia several months earlier, and met at the YSC conference in Dallas last February. We've also been in touch via email. I don't get to talk to her as much as I'd like, but always enjoy when we connect. She's really a sweetheart -- gorgeous, too, but even more beautiful and kind underneath. We had a great lunch. She's been through a lot this year, but seemed to be doing very well. We had a chance to catch up on health stuff, and talk a little about books and travel. Kim had her own trip coming up in a few days - and she also seemed genuinely excited for me about my upcoming plans, which made me even more excited!
As for the food, I don't remember exactly what I had. Some kind of vegetable pasta. The portion was huge, and I do remember that it was quite tasty! When we were finished with lunch, Kim gave me a ride to Union Station. She took some pictures and wished me well, then left to go back to work.
I'd already had a great stay in Portland, but now it was almost time for the heart and soul of my trip -- THE TRAIN! This would be my first solo train adventure ... and my first time in a roomette! I could hardly wait to board.
Actually, I wouldn't get my roomette 'til we hit Spokane; before that, I would be in a "lower level" coach seat (for some reason, doing it this way made the trip about $300 cheaper). But I didn't mind this at all. I even got to hang out in the "VIP lounge" in Union Station, despite the fact that for the first eight hours, I was a mere coach patron. The "lower level" turned out to be MUCH quieter than upstairs, and I met some characters down there. Including a guy who ... offered me methadone. (Weirdly enough, this didn't creep me out. I'll tell you more about it, and him, in my next entry.)
Overall, the Empire Builder would take me through seven states, five of them brand-new to me. For the most part, I genuinely enjoyed all of my train rides (especially compared to my flights), but something about the Empire Builder made it stand out, and it remains my favorite of each of the routes.
Coming up in my next post, I'll write all about that, plus I'll tell you about my lovely stay in Milwaukee, WI with my friend Kait and her family ... which I enjoyed so much, I ended up staying an extra day (if you haven't seen Lake Michigan yet, you must make a point to see it. It's BEAUTIFUL!)
Monday, March 23, 2009
Weirdly enough, I actually wanted my oncologist to order me a Neupogen shot. (For those who don't know, Neupogen is this drug they give to people whose white blood cell counts are too low, usually a result of chemo or -- in my case -- radiation.) There was no way that I was about to miss that conference; however, I'd only been out of the hospital for two days, and I sure as heck didn't want to get sick again, either! As painful as a shot in the abdomen might sound, I do have faith in old Neupogen and its ability to boost my counts high enough to protect me from any nasty, unwanted infections.
So the day before my appointment, I called my onc's nurse to explain that I was traveling again, and to see if she could give me the shot. I got some vague answer in response to the Neupogen. HOWEVER, she told me that I was scheduled for something else the next day; something called an "Eligard" shot. I'd never heard of such a thing. But after she mentioned it, my mind thought something along the lines of: Eligard... GUARD?
So somehow, I concluded that this must be another kind of shot to "guard" me against infections. I thought, Oh, that'll do. Who cared if I got Neupogen or Eligard, as long as whatever shot they gave me kept me from getting sick again while traveling?
I wasn't nervous at all when I first heard about the mysterious Eligard shot. Little did I know what lay in store for me in less than 24 hours!
The next morning, Merwyn dropped me off at the clinic. I was a little early, so I sat for awhile in the waiting area with a book and some tea. At 9:45, I went promptly over to my "favorite" place, The PacLab, to get my blood drawn. Because of the pneumonia, I had to wear a stupid mask when they were jamming the needle in my arm. Other than that, though, the "lab" was quick and uneventful. I've gotta give PacLab credit -- they're very efficent at what they do (and their blood draws hardly hurt at all!).
After labs, it was time to meet with Dr. Ye. He briefly mentioned the Eligard shot, and told me his nurse would administer it for me after he and I took care of some other business. At some point during this chat, I finally realized that Eligard had nothing to do with white blood cell counts or immune systems; it was actually another version of Lupron, this "ovarian suppression" treatment that he'd told me about at my last appointment. I already knew I'd be getting regular Lupron shots; I just didn't know that I'd be starting them that day. No worries. I may loathe needles, but still. You've felt one shot, you've felt them all, right?
Well, before I could experience the real joys of Eligard, I had to go across the building and get a chest X-Ray to make sure there was no pneumonia left in my chest. This process took awhile. Most of that time consisted of me sitting around in a chair. (Thrilling.)
But when I finally returned to Dr. Ye's office, he was ready with some news for me. The X-Ray did indeed show just a tiny bit of pneumonia lingering in my lung. Dr. Ye prescribed five more days' worth of Amoxicillin, "just in case." Then he told me that I didn't need a Neupogen shot, after all. My blood counts were in the "normal" level.
After hearing all this, I still felt a little worried about my upcoming trip, but the doctor assured me that traveling should be just fine. I knew he couldn't just hand out Neupogen like candy, so ... whatever. If I didn't need it, I didn't need it. I decided to take his word on this.
The next order of business was Femara, an "aromatase inhibitor" that's supposed to block estrogen (my cancer's BFF). Dr. Ye gave me a sample bottle with 30 of these pills and told me to start taking them on a daily basis beginning March 1st. After that, we talked about Zometa, this bone-strengthening drug (the one I had to go to the dentist for back in January, so I won't get osteonecrosis of the jaw.) Dr. Ye told me I was scheduled for a 15-minute infusion of Zometa on March 26th.
We chatted a little bit more, mostly about my upcoming appointment at the Seattle Cancer Care Alliance, and then finally -- it was time to head toward the back office for ... my Eligard shot.
Dr. Ye's nurse was already back there with her tools. She held a syringe in her hand, and I could see the box that said "Eligard" on the counter right next to her. I didn't really want to watch her prepare the needle, but I felt I had to make conversation. So I asked something along the lines of, "So, where do I get this shot, anyway? My stomach?"
Nope. The nurse smiled grimly and pointed to her "rear end."
I chuckled awkwardly for a moment or two. So did the nurse. I could tell she wasn't thrilled about this part of her job. (Did I mention that she's Dr. Ye's only nurse, at least at that particular office?) Finally, after a few more minutes of awkward chuckling, I asked the next, most logical-seeming question: "Does it hurt?"
I expected the usual spiel ("Well, you'll feel a little poke...") and was horrified when she instead began to tell me the story of how much her last patient hated his shot, and how painful it was. Not only that, he was the first patient she'd ever given this shot to ... which made me only the second!
Well, any ambivalence I might have felt about Eligard was long gone by this point. To make matters worse, she warned me to NOT look at the needle (like I really would have). And speaking of that needle, she was taking forever to prepare it. And I had no idea how to prepare for my part in the injection. Was I supposed to just bend over the chair? Somehow, I didn't think so, but ... what did I do? I didn't want to stand there with my pants down yet if it wasn't necessary.
Eventually, she had everything ready, so I finally did pull down my pants and leaned uncomfortably against that chair. I guessed she must have swabbed the injection site with alcohol; I don't really remember. What I DO remember is a pinch, followed by the words "I wish I could tell you that this doesn't hurt!" And wouldn't you know, right as she said hurt, the needle went into my skin.
I wish I could tell YOU it didn't hurt, but the next several seconds were seriously the most painful seconds I've ever felt, shot-wise. The initial jab actually made me cry out, "OW!" That was followed by a VERY brief moment of painlessness --but just as I began to think, Maybe this isn't SO bad, I began to feel this horrible, awful, deep, stinging pain down at the injection site. The nurse made the moment oh-so-much better by telling me how this was a thick medicine, slow to inject, and that's why it hurt so much. Oh -- she also spilled some on me, which I'm sure really "helped" with the pain.
Really, the only quote-unquote "good" thing about the shot was that it seemed to be over relatively quickly (despite what the nurse said about the drug being slow-to-inject). Next thing I knew, she was putting one of those circular band-aids on the injection site, and then I was able to pull up my pants again and go about my day. The nurse kept on telling me, "I'm sorry! I'm sorry! It's only every 28 days!" The thing is, she was so nice in the way she went about giving me the shot. I mean; I wish she hadn't told me how much it was going to hurt, but I could tell she didn't want to hurt me. I think she just wanted to be honest with me. And after joking with her about it some more, and feeling so relieved that the dumb thing was done and over with, I actually left Dr. Ye's office in a pretty good mood that day.
Well, with most shots, I usually forget about them immediately. Occasionally, I'm sore from a shot for the rest of the day, and then I forget about it by the next day. I was still sore from the Eligard when Merwyn picked me up, but I figured the pain would go away by the time I went to sleep that night. I made sure to tell Merwyn how awful it was; but otherwise the Eligard experience moved temporarily to the back of my mind...
Until the next morning. That's when I noticed the spot was still sore. And it was still sore the next morning ... and the next...
The pain from that darn shot stayed with me for the next several weeks! In fact, it's STILL noticeable! I wouldn't call it excruciating pain, but the spot is definitely sore (especially if I lay down right on it) -- and to top everything off, there's a hard little KNOT there right where she slid the needle in! It itches sometimes, too. I keep wondering, is this even normal?
Last Thursday, I visited an excellent oncologist at the Seattle Cancer Care Alliance and she confirmed that, unfortunately, the side effects from my Eligard shot are indeed normal. (Though she wondered why I'm receiving Eligard instead of Lupron. Me, too. The drugs are basically the same thing, but there are differences -- such as Eligard is usually known for being prescribed to men with prostate cancer, whereas women who need ovarian suppression treatment are usually prescribed Lupron. So why am I getting the Eligard?)
I don't know, but it's really discouraging to think that I might have to have these shots on a monthly basis for the rest of my life. The more I think about the shot I received, the more I realize how traumatizing it was. In fact, my next Eligard injection is scheduled for Thursday (along with my first Zometa infusion) and needless to say, I'm dreading that day like crazy. It's going to be the doctor appointment from H*LL! I hope I at least get a different nurse to give me my Eligard. The one nurse really is nice; I just really don't want her around me with that particular drug. Maybe one of the nurses at St. Pete's can give it to me. (But I know it will still hurt.)
Fortunately, SCCA offered me a light at the end of the tunnel; the oncologist I talked to there last week strongly recommended an "oophorectomy" (removal of the ovaries) instead of ovarian suppression. I'm with her 110%! I don't think my own oncologist is necessarily crazy about this idea -- I think his hesitation has something to do with the "having kids" factor (but Merwyn and I have known for years that we're going to adopt). Ultimately it's my choice, and the surgery is the choice I'm going to make. I'd rather just have the stupid ovaries taken out forever -- then I'll never have to worry about ovarian cysts (which I'm prone to), or excess estrogen (no, cancer, you CAN'T have it!). And best of all, I'll never have to worry about another horrible, horrid Eligard shot!
I do have to wait awhile for this; what with the wedding and our honeymoon in Europe coming up, it's probably best if I postpone the procedure until summer. But then it's surgery time for sure!
I suppose I can withstand another Eligard shot or two (or three), knowing that soon enough, they'll be a thing of the past... I'm not going to love them, but at least now I know I don't have to dread them for the rest of my life!
Wednesday, March 11, 2009
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!)
Thursday, January 22, 2009
Since my diagnosis on December 19th, I've made quite a bit of progress on adapting to this newest chapter of my life. It took awhile for some stuff to get off the ground, and a lot of stuff has yet to actually happen. But it'll happen soon enough.
Here's a little rundown of what I've been through since that fateful day in my oncologist's office, as well as a preview of what's to come:
The steroids: For the first week following the big "mets" revelation, popping a few steroids per day was virtually the only thing cancer-related I did in terms of "treatment." Some drug called Dexamethason. The doctor prescribed it to me because one of my scans showed some swelling near the trouble spot on my spine -- also, possibly to help with the gratuitous arthritis that I also happened to be diagnosed with that day (the arthritis is a probably a side effect of either chemo or Tamoxifen, the latter of which is a pill I'd been taking for the past year in order to help prevent a breast cancer recurrence. Obviously, it worked really well in my case.)
As for the Dexamethason, I started with four pills per day, then -- per my oncologist's orders -- gradually decreased it to three pills per day, then two, then one. A couple of days ago, I stopped taking them for good. (My oncologist said it was okay.) I don't miss them very much. The pills gave me a bit of extra energy, and they did help a little with the arthritis in my knees. However, they were also steroids, and therefore made me hungry -- as in, ridiculously hungry! I swear, since I started taking them, there were nights when I literally felt like I couldn't stop eating. I tried to remedy this by snacking on veggies and other healthy foods. But still...
I just tried on my wedding dress (for the first time in five years!) and was lucky enough that it actually still fit. I'd hate for that to change because of some steroid! So I'm glad to be done with the Dexamethason.
The biopsy: One of the first things my oncologist mentioned after he told me about the mets was a "bone biopsy." I guess it was necessary to confirm the new spots were indeed metastatic breast cancer and not some brand-new cancer.
As is usually the case when I hear about a new procedure, as soon as I could, I went home and googled the words "bone biopsy" and "hurt like hell." Naturally, pages and pages of results came up, with people describing their horror stories. There were a few cases where people said it was no big deal; and actually, the two biopsies I had a couple of years ago (one on each breast) turned out to be surprisingly painless. Still, there's something so ominous about the word biopsy; and the thought of some radiologist jamming a giant needle into my spine, and taking little slivers of bone -- while I was awake! -- sounded especially horrifying.
I was able to get some generic Xanax from my oncologist, and somehow managed to make it through the days before the procedure without thinking about it too much. The biopsy was scheduled for the day after Christmas. Merwyn and my mom went in with me that morning to St. Pete's hospital; we were told it would be a six-to-eight-hour day.
It turned out to be more like a twelve-hour day, as my biopsy ended up becoming more-or-less an impromptu surgery. From the beginning, they'd told me I could have all the "twilight anesthesia" I wanted, but that I would have to be awake enough to hold my breath when I was going in and out of the CT scan machine (the biopsy somehow involved a CT scan). However, that day, for whatever reason, the doctor changed his mind -- I was already pretty high on Ativan when he did, so I didn't know or care why -- and he put me under general anesthesia. I didn't feel a thing!
All in all, the procedure was probably worse for Merwyn and my mom (who had to wait around all day) than it was for me. I had a great nurse for the first part of my stay (the one who replaced her was so-so) and all the Ativan I needed. The only painful thing I remember was a blood draw in my hand, but even that was fast.
The biopsy came back positive for metastatic breast cancer, but we were 99% sure going in that this would be the case. So no surprise there.
The scans: One thing we didn't know for sure until they tested it was whether or not the cancer had spread to my brain. It seemed unlikely; I didn't have headaches, or blurred vision, or any other symptoms that one would expect to find in someone with brain metastes. (Not everyone has symptoms.) Still, the previous scans already showed that my liver and lungs looked fine; and my oncologist needed to check my brain to make sure it was okay, too. He scheduled a brain MRI for January 8th.
But before I could lie down in the MRI machine at St. Pete's radiology department, I had to go down the hallway and take care of another procedure. One of my scans had also shown an ovarian cyst. It was most likely benign (and most likely yet another lovely side effect of Tamoxifen!) but my oncologist had ordered a pelvic ultrasound to check it out "just in case."
I'd had ultrasounds in the past, and found them to be one of the "easier" tests. I figured this one would be no different than the others; I'd lie on a table while the technician smeared cold gel all over my abdomen and peered at a computer screen. I was wrong. That pelvic ultrasound turned out to be one of the more annoying scans I've had throughout my whole cancer experience; and if I never have another one of them again, it will be too soon!
First off, I was told to drink 24 ounces of water before coming in for the procedure, and ... not go to the bathroom. Okay. I wasn't thrilled about this, but I obliged.
What do you know, when I got to St. Pete's, they were running behind. I had to wait an extra half hour for my ultrasound! By the time I finally made it onto the table, I was miserable, and positive that I was about to have an "accident" any minute. But before they let me go to the bathroom, they had to push around on my pelvis for ten minutes or so. As you can imagine, all that pushing really added to my comfort level.
Finally, they let me get up and "relieve" myself. But then came part two of the procedure. The less said about that, the better! Let's just say it involved pushing a wand around ... not necessarily on my pelvic region. Also, I wasn't wearing anything from the waist down.
Frankly, after that ultrasound, the brain MRI was a walk in the park. I didn't even mind the radioactive injection very much. I just popped a Valium, then let them settle me into the MRI machine and do what they needed to do. The test took about 40 minutes, I guess. I don't know for sure because I actually fell asleep in there!
I got the results of both tests a week later, and fortunately, they were both clear. This was especially relieving to hear about the MRI. I don't even like to think about "brain mets." There are people who have them and seem to be enduring them surprisingly well. If my cancer ever spreads to my brain, I hope I can handle it with the same grace as these people, but admittedly I'm not in any hurry for this to happen any time soon.
The radiation: On January 8th, right after my ultrasound and MRI, I rode over to Radiant Care in Lacey for the first of my 25 radiation treatments. Three days earlier, I'd met with my old radiation oncologist for a consultation, and the day after that I got my "tattoos." I loathe needles, but the tattoo process was uneventful. These ones actually hurt less than the ones I got a couple of years ago (and now I have three new blue dots to add to my collection -- one on each hip, and one an inch or so under my belly button).
My radiation oncologist, Dr. Hartman, is awesome. He looks like James Woods. He's pretty easy to talk to, and confident without being arrogant, so I feel like I'm in good hands. I like that he let me take a detailed look at my scan results on his computer (prior to my consultation with Dr. Hartman, I'd only heard about my results, and glanced very briefly at a pathology report). Also, when I told him I'm going to Disney World next month, he made a point to get me into the schedule right away so that I could finish the treatments before my trip.
(Now, though, it seems like everyone at the clinic knows I'm going to Florida; all of the technicians have made a point to ask me about my travel plans. Which is nice but makes me feel sort of "Make-a-Wish"-ish, if that makes any sense.)
The radiation itself won't get rid of the spots on my spine and pelvis, but I think it will help stabilize them. It's also supposed to help with pain relief. I've actually had very little pain, but if the radiation keeps me from having any, then all the better. The worst part (other than the awkwardness of pulling down my pants each time, which I wrote about in my last entry) is having to go to Radiant Care every single Monday through Friday, which got old about nine treatments ago. At least it's only for a few more weeks.
In case you're curious about how radiation works -- basically, I lie down on my back on a hard table (they call it a "couch" but it doesn't even remotely resemble one) with a cushion under my knees, and another one at my feet. The radiation machine is above me. As soon as my tattoos are exposed, and I'm sufficiently covered up (well, at any rate, covered up) the technicians will flip off the lights and go off into some other room, where they do the radiation. Meaning they somehow make the machine move around at different angles, then "buzz" for a few seconds, then move on to the next angle.
Occasionally the technicians will come in and out of the room, walk over to me, peer at the area around my tattoos, and say something like, "Nine point nine." I have no idea what they're referencing with these numbers. Meanwhile, I just have to lie there with my hands on my chest and gaze at the machine above me, which is stickered with these weird labels with mysterious codes on them ("Y1Out" and "Y2In" and "XL"-something). At some point my "couch" always shifts; usually the technicians will call out a warning to me before this happens. I never mind when it moves, though. For one thing, it's a signal that treatment is almost done for the day and I can get out of there and go home!
The whole setting always reminds me a little of Flight of the Navigator. (Actually, they play fifties and sixties music in the background, so whenever "I Get Around" inevitably comes on, all that will be missing is the little creature. Oh, and I guess to really be like the movie, my radiation machine would have to start making snarky jokes like that spaceship.) Anyway, it's all very "sci fi", but it doesn't hurt a bit, other than the fact that lying on the table for 10-15 minutes can be hard on my back.
The future: That's about where I am up to this point, as far as what's already been done. However, as soon as I finish radiation, there are three different drugs that I'll be starting, all of which will hopefully keep the stupid cancer at bay for as long as possible.
Femara: I don't know very much about this drug, other than that it's an alternative to Tamoxifen. I hope that it works for me longer than Tamoxifen did! From what I understand, with these hormonal drugs, they'll all eventually stop working, at least for those of us with Stage IV disease. BUT they'll work for awhile. So it's important to get as much "shelf life" out of them as we can (and I've heard of several people who go for years on a certain drug, which is definitely good to know).
Lupron: All I know about this one is that it's given as a shot (oh, yay!) and the purpose is to suppress my ovaries -- which is particularly important because my cancer is largely fed by estrogen. The shot is supposed to be painful. I can live with that. However, these past few weeks I've seriously considered just having my ovaries removed (a procedure with the odd name of "oophorectomy"). A lot of women go this route, and the more I think about it, the more I feel it's something I'd prefer to just the shots. The surgery isn't supposed to be very difficult -- and I think it would give me more peace of mind to just have my ovaries gone. My oncologist suggested Lupron shots, so that's where I stand right now; but I do think the next time I see him, I'm going to bring up the possibility of getting an oophorectomy instead.
Zometa: As for this last drug, it's a "bisphosphanate" that I'll be receiving via infusion on a monthly basis. It's supposed to keep my bones nice and strong. I've heard mixed things about it (such as, it works, but it's also been known to cause chemo-like side effects in some folks). For me, it's already been kind of a pain, just because of the dental connection alone. Before I can start taking it, I have to get any necessary dental work taken care of, because of a link between bisphosphanates and a horrific-sounding condition called "osteonecrosis of the jaw."
I had a heck of a time finding a dentist who was willing to see me on short notice with my DSHS, but with the help of my mom, I was able to make an appointment with my old dentist from my teen years. That appointment is coming up this Tuesday. Have I mentioned that I'm terrified of the dentist? I can't think of anything I'm looking forward to less ... but I suppose it has to be done. I remember this dentist as being sort of
Meanwhile, I've been fairly successful at maintaining a healthy diet. Merwyn has been a huge help with this, cooking up yummy dinners every night with beans and soups and veggies (maybe it's not the steroid that's made me eat so much!). We've been buying organic food as much as possible. I don't know how much of a difference eating healthy makes, but it's something I can "control" and it feels good. So I plan on keeping it up!
On a similar note, I might take a closer look at some of my "cosmetic" products soon (I'm a lotion junkie), as there might be a connection between certain chemicals and estrogen levels. I don't know very much about this yet but I've seen discussion on some online groups and it doesn't necessarily look like something I want to pass off as "mumbo jumbo." But one thing at a time.
Finally, there are some important things coming up in February that I wanted to mention:
-First, of course, I'll be in Disney World (along with my mom, sister Angie, brother-in-law Doug, and nephew Cooper) from the 14th to the 21st. I'm really looking forward to it; I haven't even been to Disneyland since 1995 and have never been to Disney World!
-Then, on February 26th, I have a consultation at Seattle Cancer Care Alliance. It took awhile to set this up, but I've heard great things about them and I'll be glad to get a second opinion from such a respected place. (Not to mention have a connection there if I decide I want to go back.)
-Last but not least, the very next day after my consultation, I'll fly down to Dallas for the annual Young Survival Coalition (YSC) conference! They approved my scholarship just in the nick of time (the same night I got my letter, they posted a note on their website saying they ran out of funds). So I'm flying down there virtually for free. I can't wait!
That's about all for now. I don't want to say when I'll post next, because then I probably won't, but whenever I do, it will very likely be about everyone's favorite medical professional, the dentist!
Sunday, January 18, 2009
(At least, that's my intent. I'm not always as faithful at updating/maintaining blogs as I'd like to be!)
I've been posting off-and-on about my cancer experience over at MySpace since I was originally diagnosed (with Stage IIB cancer) in November of 2006. I'll continue to cross-post there; however, now that I'm a Stage IV, I wanted to have a place where I could post things that I might otherwise consider too short or too "boring" (or whatever) for my subscribers at that site. Plus, not everyone is on MySpace. (I don't even log in there all that much anymore.)
I hope this blog will be reasonably entertaining, and I hope to convey the "attitude" that I try to approach this disease with, which is a healthy balance of optimism and realism. I'm usually pretty successful at this (thanks in huge part to a wonderful support system of family, friends, doctors and "survivor sisters", not to mention my awesome fiancee). I won't necessarily always be Suzy Sunshine, but I strongly believe that there is ALWAYS hope, which truly does keep me going. As does taking things one day/step at a time...
Finally, I hope that anyone who reads this blog doesn't mind my overuse of quotation marks (and parentheses). And exclamation points!
Now as for the title of the blog -- unless you're a family member, you might be wondering about that. In short, when I went in for my first biopsy, back in November of '06, my sister Angie and my nephew Cooper (who was 2 and 1/2 at the time) happened to be along with me. That day, I had to take off my shirt and put on one of those hospital gowns(for the first of many, MANY times).
When I was putting my shirt back on, Cooper -- who'd been pretty quiet up until that point -- suddenly shouted, out-of-the- blue, "AUNTIE TAMMY'S NAKED!" It certainly lightened the mood of the afternoon; Angie and I cracked up. And to this day, certain family members will still tell Cooper to say the same line, and he'll delightfully oblige (which I have to admit, usually makes me and everyone else in the room chuckle).
While my nakedness is probably not a mental image that most of my readers want (heh), I can't think of a more appropriate title for this blog. I've lost count of how many times I've had to sit around in some medical office in a state of half-dress. Usually I'm wearing one of those gowns, but occasionally not even the gown, if the doctor needs to check my boobies!
Actually, during my first bout with cancer, if I had to expose a body part, most of the time it was my boobs; however, now that I have spots on my lower spine and pelvis, it's the other half of me that they "get" to see! I'm currently being treated with radiation, which is a breeze for the most part. But my least favorite part is definitely when I have to yank down my pants to below my "rear end" every day (so that my tattoos are visible). Granted, I'm covered up for the most part, but it's a little ... awkward. Especially the part at the end when the male technician always comes in and says, "You can pull up your pants."
(Shouldn't "you're all done for the day" be sufficient?)
Despite everything I just said, weirdly enough, you get used to all the undressing. BC doesn't leave a lot of room for modesty.
Anyhow, I'll post more later today or tomorrow. This past week was a good week for good news; I have a lot of things to share! I'm also working on my "blogroll" list and will get that up soon.
Until next time ...