An Inconvenient Tumor

After much deliberation, I've decided to officially write the next few posts out of order. We've gotten many emails from people sharing their excitement and anticipation in regards to  hearing about and seeing photos from our wedding day celebration. Trust me, we're excited to share the stories, too! The problem is, we haven't received our photos yet (it should be about another week or two), and I want to write the stories and share the photos at the same time. It will bring the whole day to life again for Bryan and me, our attending family and friends and hopefully for other readers, too! That said, I don't want to delay adding other posts to my blog just to wait for wedding photos. Truth be told, there are much more important things going on since the wedding, e.g. Bryan's first post-radiation MRI results, plans for Bryan's fundraiser, job prospects, etc.

The wedding details and photos will come very soon but in the meantime, we're moving on. There's a lot to cover! So, without further adieu, let's talk about Bryan's MRI results.
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Bryan and I were able to extend our honeymoon by two days (due to lost luggage and sickness early on), so we returned at 5:30am on Tuesday, July 7. Despite our 8 days of Maui relaxation, we had a busy medical week in store:

Tuesday, July 7: Get Bryan's labs (blood work) done
Wednesday, July 8: Post-radiation MRI #1, Neuro oncologist follow-up appointment
Thursday, July 9: Radiation oncology follow-up appointment

After sleeping for about four hours post-red-eye on Tuesday morning, we finally got up and made our way to Cedars to get Bryan's labs taken. During radiation, Bryan got his labs done in Cedar's underground cancer center. We knew the routine, knew where to go, who to talk to, etc. This time, however, since Bryan had officially ended radiation, we were directed to go to Cedar's main building's lab center. We must have still been feeling Maui's laid-back "island vibe" because we genuinely expected to be in and out of the lab center in five minutes. After all, that was the cancer center's typical timeline for our "give paperwork...sit down...draw blood...say thank-you and goodbye" routine, so why would it be any different somewhere else in the hospital? Well, you guessed it, because by the time we got to the lab waiting room at 3pm, there was a one-hour wait. Yikes. To add insult to injury, the waiting room is literally the size of our kitchen; about eight feet long and five feet wide. We sat and waited and waited and waited until Bryan's name was finally called. He went in and three minutes later was done. Why the wait took so long for a three-minute blood drawing is beyond both our comprehension, but we're going to try and find a better place (or time) to do it next go round!

We were done with Cedars for the day, so home we went. We had an early night as we wanted to be bright-eyed for Bryan's 8:00am MRI appointment the next morning. We were definitely still on Maui time (we altogether forgot about jet lag, as it's been so long since we traveled more than an hour away from home) because getting up was a serious chore. It legitimately felt like 4am when our alarm went off, but we got out of bed and headed to Cedars Imaging Center. In typical Cedar's fashion, we were whisked through registration and I was allowed to accompany Bryan through each step of the process. The severity of his symptoms has been increasing since the radiation finished, so I help him walk around pretty much everywhere. The wobbliness is in full force and his speech is slurred because of the numbness in part of his tongue. Not to jump ahead, but the doctor's say that this is normal and expect the symptoms to lessen as the radiation shrinks the tumor. This, however, can take between six months and a year.

But I'll get to all that in a bit. First comes the MRI. Bryan and I were led into a dressing area where he was instructed to remove his clothing and anything electronic or metal on his person. The technician gave us two incredibly (un)sexy hospital gowns for him to use, one to wrap around the front and one to wrap around the back. Well, Bryan decided a few things right away; a) there was no need for him to take his underwear off, because really, the MRI wasn't studying anything below his neck, much less his waist. And b) Bryan decided that one hospital gown was more than enough to properly cover him up, not to mention was the easiest to put on without assistance. Gown on and electronics safely stowed in his locker, Bryan sauntered out in his teeny-weeny gown to the tech, who eyes immediately went to Bryan's exposed chest hair and upper thigh. He asked Bryan, "are you sure you only want one gown???" Bryan reassured him with a hearty "yes" and we were on our way.

We went into the MRI room, which was about 50 degrees. I'm not kidding. It was frigging freezing in that room. Bryan got on the MRI table and was swaddled in about 10 blankets. Since I was actually allowed to stay in the room with him during the MRI, I was handed a few blankets, too. I've never had an MRI so I'm not sure whether or not the sub-zero temperature is standard, but all I can say is thank goodness for those blankets. They warned me that it was going to be loud as well, so they handed me some earplugs. I've unnaturally small ears and ear plugs are a real challenge for me, so I debated using them for about half a second. All it took was seeing them put in Bryan's ear plugs and then cover them with Bose sound silencer headphones to know that it was time to put those ear plugs to good use.

The tech left the room and for the next 25 minutes Bryan had his MRI. The tech was great about letting us know when various series of sounds would start and how long they would last. I figured I would at least make the most efficient use of my time during the MRI, so I sat and wrote thank-you notes for the wedding gifts. I'm proud to say I got through almost all of them, as it's amazing how fast you can write when you're uninterrupted and freezing.

From start to finish the entire process took about an hour and a half, so when Bryan was all done we did what any jet-lagged newlyweds would do: we went home and slept. Once again, we got up with our alarm and got ready, but this time headed to our neuro oncologist's office to get Bryan's MRI results. Once there, we followed the standard routine: meet with Joanna to review symptoms, cognitive abilities, movement and muscle functions, etc. We reviewed Bryan's (reduced) medication list and then waited for Rebecca, the Physician's Assistant. Rebecca did her typical tests as well, asking Bryan to stand-up, sit down, hold up his arms, push her away with his leg, etc. The left side of Bryan's body has gotten increasingly weak since the radiation ended, so she was testing his mobility, his balance, his dizziness and his muscle function. Given that he was three weeks out of radiation, they said he was doing well but that we needed to keep an eye (no pun intended) on one new symptom: his left eyelid doesn't close as much as the right one does. It's a tiny symptom neither Bryan nor I had noticed before, but our doctor saw it right away and added it to his list of symptoms to monitor.

Our doctor took us into his viewing room, which already had Bryan's MRI prominently displayed on the screen. There was something really, really strange about seeing the tumor again. It's like you're never really ready for it. You do all this work, go through radiation and chemotherapy every single day for six weeks, and the little fucker is still there. Excuse my French, but that's how you feel. You want it to have completely gone away, to have the life kicked out of it, but it's right there, staring you in the face, exactly the same size as before. However, the great part about our doctor is that before we even had a second to feel kicked in the stomach, he launched into "okay, sit down and let me tell you what's really good about this MRI."

So, let me share with you the "really good" news about Bryan's MRI:

Good news #1: Our doctor explained that there were a few things that could have gone wrong during the radiation. Without getting into them, suffice it to say that none of them happened to Bryan or his tumor.

Good news #2: Even though the tumor "appeared" to be the same size as it was pre-radiation, what we were actually seeing was the area targeted by the radiation in Bryan's brain. For some reason, we expected to look at Bryan's first post-radiation MRI and see a perfectly healthy brain sans tumor. But just like any "surgery" or injury that requires treatment, there is going to be a scar. Turns out even the brain can have scars. Who knew? So while we were looking at the tumor, we were also looking at a bigger area that had been hit by radiation. The good part about that is that the radiation isn't done working. It's saturated in the area around the tumor, which will essentially continue to kill the tumor cells and shrink the tumor over time.

Good news #3: The tumor did NOT grow. More aggressive tumors will grow even during radiation, so we were thrilled that it didn't grow at all and is expected to shrink to between 50% (best case scenario) and 75% of its original size over the course of the next six months to a year. 

So while this is all good news, Bryan was and IS incredibly frustrated because, truth be told, he basically has to sit and wait and let the radiation do its job. The problem is that while the radiation continues to work, his brain remains swollen and his symptoms are at their worst. I mean, let's get real for a second. Bryan just had his brain treated with SIX WEEKS OF RADIATION and CHEMOTHERAPY. Not to mention he just finished his first five-day round of post-radiation chemo. Adrenaline basically pushed him through the events at our wedding, because now he's truly exhausted and can sometimes easily sleep through the night as well as an additional three-five hours of the day (he's resting right now as I type this...it's 2:10pm). While it's easy for our some of our friends and family to want to be in denial about it (mostly because no matter how hard they try, people just can't understand when they're not living our life 24/7), the truth is that Bryan needs a lot of help walking and getting around and even occasionally standing up from a sitting position. Unassisted walking on uneven surfaces – and I'm talking even a minor 5% slant of a driveway – will cause him to literally fall over. We take elevators instead of tall flights of stairs now. While it may sound strange, Bryan now says I'm "trained" and it's true. I recognize every single nuance in his every movement and his speech. The dexterity of his left hand, arm and leg is probably 20-25% of what it once was and he has an incredibly difficult time gripping anything. Everything that "normal" people do without a second thought can be an exhausting venture for Bryan; from getting hold of a sock to put on his foot to pulling a t-shirt over his head. Lifting his foot five inches to get into the shower and even worse, getting out of the shower while wet is a daring exercise. Opening a child-proofed bottle of his medication (luckily there's only one) takes a few minutes, so forget about walking and carrying anything at the same time, like a dinner plate or even a water bottle.

For me, there is an incredibly delicate balance in knowing when to help. Of course when you see someone struggling, in the beginning it was hard not to want to help all the time. But I had to understand and come to grips with the fact that Bryan wants and needs to do a lot of this on his own, and it's important TO HIM for those around him to let him do it on his own. That doesn't mean that I'm not there just in case when he's getting out of the shower or car, but it does mean that I don't put on his socks and shoes for him. I don't help him put on his shirt, even if it takes him a good five minutes, because we know how important it is for him to learn how to use his muscles again.

That said, it's beyond important to both of us to make sure that Bryan keeps his energy, his mobility and spirits up. Just last week, I enrolled him in Cedar's neurological physical rehabilitation center to start to rebuild the dexterity and muscle in his left side. His first appointment isn't until this Friday, so in the meantime we do little exercises at home (think squeezing a stress ball, leg lifts, slow stretches, etc.) and go on walks every day. Sometimes the walk is around the block, and other times it's a mile long. We let Bryan's body make the decision for us. When we go to the grocery store, Bryan is in charge of the cart. Holding onto the cart helps him walk steadily and he zooms around the store. When we get home he may need a rest, but the important thing is that he's maintaining mobility. Separately, I make sure Bryan rests enough but not too much, because I can now recognize that there are two meanings to the simple statement, "I need a nap." Definition #1: "I'm legitimately tired and need to sleep and re-energize" versus Definition #2: "I'm sick of this shit, it's too hard and I'm just going to lie down and feel sorry for myself." There's definitely a time and a place to feel frustrated and sorry for yourself, but we try to keep it at a minimum. We know there are good days and bad days, and we're just taking it day by day. Sometimes, we take it minute by minute, because you have to.

This is our reality right now, and while I'm sure it sounds unimaginable to people reading this, we're working through it and we know there is a light at the end of the tunnel. No one ever said this was going to be easy, and the important thing to know is that our doctors' have said this is normal and over the next six months to a year, it will get better. A year from now, they expect the tumor will have shrunk to the point where the vast majority of his symptoms will have subsided and his left side will be normal again. However, the symptoms that may take the longest to go away (or may never go away completely) are those related to his facial sensation, facial movement and even portions of his eye movement. This is because Bryan's brain stem tumor is sitting directly on cranial nerves 5, 6, 7 and 8, which control facial muscle movement, certain eye movements, facial sensation and balance. That's not to say it won't ever get better, but those are the regions most affected by the tumor and right now, by the radiation. Like I said, it's day by day.

While it's hard, we're very cognizant of the fact that this is a marathon, not a sprint. Given that we're in a tough stage of the race, we're doing great. We're definitely keeping positive and we try to laugh as much as we can. In addition to me, Bryan's family and friends pick Bryan's spirits up when he occasionally needs it and I have friends and family that pick me up when I need it. So far, those times have been extremely few and far between because I've found my groove at powering through everything. Emotionally-charged conversations hardly every happen and my closest friends and family know better than to constantly ask me things like, "But REALLY, how are YOU doing???" There's nothing more annoying than that even when people are well-intentioned, because I'm smart enough to know that I can't support myself and Bryan all the time. As a result, I reach out to my circle of support when I need to and they are there without question or consequence.

Bottom line is we're doing the best we can, and we thank everyone for the continued love and support. We can't wait until the point when each and every day, Bryan feels better and better. Onward and upward.

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