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
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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!
