For Better or Worse?
This isn't a post about wedding vows. Sorry. You'll read that one at the end of next month. :)
This post is about getting worse before you can get better. Because that's exactly what we're doing.
Last night, Bryan told me that he was feeling worse. Well, it started out as "worse," but then changed to "different." Our doctors' told us that this would happen as he went deeper into treatment (for the record, we're in week #3 of 6 total). This is because radiation treatment ends up making parts of Bryan's brain swell a little bit, thus temporarily worsening his symptoms. They also told us not to worry when it inevitably happened, because it doesn't mean BRYAN is getting worse, it means that the radiation and chemo are working. But really, how can you NOT worry?
In order to minimize our worrying, I've started a document that tracks any specific changes in Bryan's daily symptoms. I can't take credit for the idea, as it came from our Neuro Oncologist's PA (Physician's Assistant). However, I can take credit for NOT tracking his symptoms on the GIANT "Sponsored by Temodar" (oral chemo) daily calendar that she gave us. For some reason, it just felt strange. We see enough medical jargon, pill bottles and logo'd pens and pads of paper at the hospital every day. At home, we want to feel normal; even if "normal" means not looking at an over-sized prescription drug logo on a calendar. Instead, I created a draft in my email; I can change it on my Blackberry, on our laptop, and can reference it at our doctors' appointments. Thank you, thank you. I can hear your applause now.
When Bryan told me he was feeling worse, I went straight into our "daily symptoms" file. There are four major categories of symptoms that I track: 1) Dizziness, 2) Walking/Balance, 3) Facial Numbness, and 4) Weakness (specifically, the left side of body). Bryan's first major change last night was that his dizziness was coming back and that he felt much more "stumbly." As some background, the dizziness seems to be like vertigo, where the room starts to spin when Bryan turns his head too quickly to look at something. I remember a few weeks ago when we thought Bryan had Multiple Sclerosis, we were walking to a nearby restaurant and out of nowhere, Bryan almost fell over. I asked him what happened and he said had turned his head too quickly to look at some interesting movie posters on the wall next to him. They were literally four feet away from him, but walking and looking simultaneously brought on his dizziness full force.
Bryan's second major change was his facial numbness. When this all started, the facial numbness was primarily on his right side. As of last night, it was lessening on the right side, but moving more towards the left. Specifically, he said it felt like "deep numbness," like down inside his muscle rather than on his skin. He also said that his scalp was becoming a little bit numb. Now, don't freak out, because when I say "numb," I don't mean he can't feel anything at all. He can absolutely feel things, like when I touch his face or when he has an itch. It's more of a loss of sensation rather than total numbness.
I noted these changes in our "daily symptoms" draft and to honest with you, they made me really nervous. It was almost 10 o'clock at night, I'm not a doctor, and I have no idea what is happening inside Bryan's head. I really felt helpless, so I took the most detailed notes I could to share with our doctor. Luckily, the next day (today) was Tuesday, the day when we meet with our Radiation Oncologist. Even if it wasn't, we were calling the doctor anyway.
We went into Radiation today, as scheduled, and when Bryan was done we met with Dr. McHottie. We shared the notes about Bryan's worsening symptoms, and I could see the worry on Bryan's face. Like I said earlier, it's really easy for someone to tell you not to worry, but at the end of the day, you're going to worry. Especially when things are changing and you don't know whether they're for better or worse (get the title, now?).
Dr. McHottie (love him) sat us down and told us, in a very reassuring tone, that:
"What you're experiencing is without a doubt, 100% normal and totally to be expected. As the tumor cells start to die, the brain will start to react around it. The radiation will make the brain swell a little bit more and since the tumor is right smack in the middle of your brain stem, it will affect cranial nerves more than anything (they control numbness, balance, etc.). So, that will make your symptoms come back, perhaps worse than they were to begin with. However, remember that the symptoms will go away. But they won't go away until 2-4 weeks AFTER the radiation treatment is done. So the fact that you're feeling this way, and feeling things changing, is a very good thing."
I think he had to say it about five times because, honestly, Bryan is really nervous this week. He's so focused on results that the "unknown" is the hardest part of this entire situation. And it makes perfect sense that he's nervous, because we can't SEE anything changing. He can just FEEL things happening and FEEL things changing, but he doesn't know what they are. Well, thank goodness, now he knows what they are. We thanked Dr. McHottie but when we were leaving, Bryan was still feeling a little down on himself.
I looked at him and said, "Did you miss the most important part of what the doctor said? He said that the tumor cells are dying. DYING. Do you know what that means? It means that your tumor is shrinking and that the treatment is working. You have to concentrate on THAT. Don't let the other stuff, like symptoms, get you down because they're temporary and more importantly, they're normal."
Bryan reluctantly agreed and decided to do some meditation to solidify his positive feelings. But truth be told, we're on a roller coaster. One day is up while another day is down. Today, we're in the middle and we're okay with it, mostly because we got some reassuring news. I can't help but remember something that our great friend Jon, who is Bryan's Best Man and just an overall good guy, said last week. Jon's dad went through a really rough bout with Esophagal cancer a few years ago, so he knows exactly what we're going through, and more importantly, how we're coping. Jon said, "having cancer is like being at the bottom of a hole. But it's getting good news from doctors and having optimistic moments that gives you the strength to climb out of that hole, rock by rock. Before you know it, you're out of the hole altogether and you can walk away."
I don't know about you, but hearing our doctor say that "the tumor cells are starting to die" counts as a rock #1 for me. It does for Bryan, too, but the fact is when you're tired and dizzy and your face is numb and your balance is off, you feel shitty. Any normal person would. The good thing is, that's normal and means the treatment is working. Count that as rock #2. Undoubtedly, we have many more rocks to climb before we get out of this hole but at the end of the day, we're not at the bottom anymore. We're climbing our way out.
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