An Inconvenient Tumor

Two more days to go! We're so close to being done with this six-week round of treatment that we're just going with the idea that we're already done. Unlike in the beginning, where our days were literally planned around radiation and doctors' appointments and chemo "pill time," now our days are planned around real life "stuff." All the little things that seemed to be just overwhelming and exhausting, like doing laundry, running errands, going to the grocery store, and – oh! – finalizing all the last-minute wedding details, are welcome changes from the monotony of daily hospital visits. We've got energy back and we can't wait to get back to "real life."

After radiation is done on Friday, Bryan gets a 4-week break from all the doctors and lab tests and the big, buzzing, clicking radiation and MRI machines. But when we get back from our honeymoon, we get right back to it. But don't worry; it's nothing like this first round. Bryan gets lab tests done on Tuesday, July 7 and then gets his first follow-up MRI on Wednesday, July 8. We'll meet with our neuro oncologist two hours after the MRI is taken so he can review the results with us. Talk about fast!

So here's how this all works. We've gotten a ton of questions from family and friends about what is involved as far as the "next steps" go. Well, our doctors say that there is a high probability that this next MRI is going to look worse than the initial MRI Bryan had done eight weeks ago. But before you panic, know that this is NOT a bad thing, and here's why: Bryan's brain will still be swollen from radiation, so the appearance of "necrosis" (dying tumor cells) on the MRI scan can sometimes mimic "tumor growth." My question to the doctor (after which I felt like a moron): "If the first follow-up MRI may look worse, then why do the MRI now? I mean, can't we wait another month or two until the radiation settles down?"

The answer was obviously "no." I neglected the fact that our doctor has such a trained eye for these things that he'll be able to look at the initial MRI and the first follow-up MRI and start to establish patterns between the two, which is the most important part. He said the ultimate goal is to establish a pattern of shrinkage, because the radiation can continue to affect the tumor up to one year AFTER radiation has finished. Crazy, huh?

So while Bryan and I are very excited for his symptoms to start subsiding, our doctor said it's actually BETTER if it takes 3, 6 or even 12 months for Bryan's brain to recover from the radiation. This is because the faster that the brain recovers from the radiation, the quicker the potential for the tumor to start growing again. It's not guaranteed to grow again, just for the record. And as you know from my previous posts, if the tumor starts re-growing you can't do radiation again (unless the growths are little hot spots, which can get zapped by the super-duper-targeted Gamma Knife). So we actually WANT the radiation to keep working on his brain. The downside of that is that his symptoms may not go away as quickly. The GREAT side of that is that his outlook gets better and better the longer the radiation after-effects keep doing their job.

I'm realizing right now that a lot of this might not make sense, so please feel free to email us questions about this. I feel like when I was first in grad school, when I was looking at my professor as though he was speaking an entirely different language. But, after a few months, I was so caught up that "marketing speak" felt totally natural (it still does). At the beginning of Bryan's diagnosis, we looked at our doctors' the same way, our eyes and faces essentially saying "What the HELL are you talking about??? Dexametha...what? Zofran...who??" So if I'm doing that right now, even though I'm trying my best to explain everything, let me know and I can try and clarify some bigger points.

Anyway, the doctor said that this next MRI and the following MRI (September) are the most important in establishing a pattern. But he also said that we may not truly know the results until six-months to one-year from now. Bryan will continue to get labs (blood work) drawn every month and will continue to have MRIs every two months. He will most likely start monthly cycles of crazy strong doses of Temodar (chemo pills, for anyone just joining the story), 5-days "on" and 28-days "off." We'll meet with our neuro oncologist once a month from here on out, until he tells us one of two things: 1) we have to come more often or 2) we can space our MRIs farther and farther apart (we're going for the latter, obviously).

Basically, we just need to be patient now and more importantly, go back to living our lives. That's what McHottie, our radiation oncologist, told us yesterday in our final meeting. We asked him "So what do we do now?" I'm not sure what kind of answer we were looking for or expecting, but it was a bit anticlimactic. He just said, "You get back to living your life. That's all." So that's what we're going to do. It's so great to know that this is a light at the end of the six-week tunnel. We can truly enjoy the wedding and the honeymoon. The funny thing is that when we were employed, we were so looking forward to the honeymoon as a "vacation" from our jobs. When we were unemployed, we really, really looked forward to enjoying some (well-deserved, in our opinion) time off. That's almost comical to me right now, because wow, some vacation the past two months turned out to be.

Like I wrote yesterday, Bryan should be feeling like a million bucks by the time our wedding gets here. He jokingly said yesterday that, at this point, he'd "gladly take feeling like $8.50." The doctors are keeping him on steroids through the wedding, albeit a very light dose, and will slowly wean him off of them once we're back in July. I keep reminding myself (and Bryan) about the conversation we had with our friend's sister, the 8-year brain tumor survivor we met at the ShakesBEER charity event. She said that it took 3-4 years for ALL of her symptoms to go away, so we can't expect to just walk away from radiation and chemo and be all better. But as long as we have the optimism and hope that 3-4 years from now, Bryan will be symptom-free and enjoying life, that's what will get us through every single twist and turn in the road ahead.

Back to the short-term. After our wedding and honeymoon, we have no idea what's next. While that idea might be terrifying to a lot of people, Bryan and I find it incredibly freeing. It will be back to figuring out jobs, buying a house (wish us luck, you non-Californians) and getting a dog. We want to relish all that life has to offer, not sit and watch it pass us by. We want to make a difference in our jobs and in how we live our lives, which is making us reconsider our career paths. Bryan will definitely still look in entertainment, potentially as a TV writer or radio host (when his voice gets 100% better), but I'm having a harder time going back to my old career. Personally, it's really, really hard to imagine going from living a life filled with such intense purpose to settling into "insert random advertising job here." I've been in advertising for almost 10 years now, and the idea of going back to the petty bullshit (sorry) hardly seems worth it. I'd be sure to scream at someone who is inevitably panicking about a client-imposed deadline for a 30-second commercial...or worse yet, a billboard or magazine ad. Because really (and I mean REALLY), is selling another "car/hotel room/hamburger/bar of soap" worth the deadline-related panic attacks, inevitable stress disorders and 80-hour+ work weeks (weekends are an entirely different story)? I don't think so, not when the fact is you never know when the "rug of life" will be pulled out from under you. If you got hit by a bus tomorrow, would you really regret that you didn't work harder or stay at the office later? No, you wouldn't. You'd be pissed you missed that pre-fixe dinner with your girlfriends because your boss gave you a hard time about leaving "early" at 7pm. You'd regret not going to your kids' doctor's appointments because of a last-minute meeting. I'd personally be upset about not spending more time with my family and friends, preferably on a patio with great conversation, a good glass of wine and low blood pressure.

Excuse my little diatribe. My perspective on a high-octane career (like mine was) is totally, 100% different now. So we'll see where we land, but in the meantime we've had enough people read the blog and email me about possibly going into a career in writing, that I think I may actually go for it. While this is horribly inappropriate (but hilarious), someone emailed us and said that I should consider being the "Carrie Bradshaw of cancer writing." I don't know if that's the angle I'm really going for, but I may look into writing as my next career. I've always wanted to be a travel writer or a food writer, which would take two of my favorite things and let me do what I'm apparently not terrible at doing: bringing them to life on the page (or screen). I figure if I can bring cancer to life and avoid making it horribly depressing, I can write about anything. I just have no idea where to get started.:)

Anyway, we've got things to do and weddings to have and honeymoons to take before we worry about that stuff. It may sound odd, but in the meantime we're specifically excited for next week. It's the week before our wedding festivities begin, and the week where we can truly do anything and everything we want to. It is the "vacation" we thought we would have from our jobs, and even though it's only seven days long, that's okay. Because when you're used to living moment to moment, seven doctor-free days seem like a wonderfully LOOOOOONG time. We've just got two more days until we get there...

Loading mentions Retweet