An Inconvenient Tumor

This week our medical responsibilities included getting Bryan's blood work done and having our monthly follow-up appointment with our neuro oncologist. We got Bryan's blood drawn on Monday and we were up bright and early yesterday morning to make it to his neuro appointment. Since Bryan has already completed one round of post-radiation chemotherapy pills, the appointment was to give us blood work results, make sure Bryan is managing his symptoms well, see how the steroids are affecting him, etc. 

Bryan's blood work from Monday's test came back completely normal, which is great. Our team of doctors had warned us that this round of blood work might show low levels of platelets, white blood cells, etc. due to chemotherapy, but to their delight everything was normal. After a mini high-fiving celebration we moved on to the issue of Bryan's physical therapy appointments, which are designed to help with his left-sided coordination issues. The crazy thing that I have to keep reminding myself is that "weakness" is not the problem; rather, coordination is the problem. There was an issue getting our doctor to sign off on the recommended course of physical therapy treatment last week, which caused frustration on both sides. Our doctor was out while his wife had a baby last week, and typically we receive responses to phone calls and emails within minutes. Well, last week we went days with confusion surrounding who had received the fax (did they or didn't they), who had signed it, when was it getting faxed back, etc. The issue turned out to be their overwhelmed front desk assistant, who is a nice girl but for all intents and purposes is not the sharpest knife in the drawer. It's a complete anomaly from our neurology team at Cedars, 99% of whom are so smart and on top of things, it's almost scary.

Anyway, yesterday our doctor and nurse were appalled when they learned that the physical therapy paperwork had not been taken care of (even though the front desk girl shakily said that it had been...on three different occasions) and that our application for a handicapped parking placard was only mailed yesterday (versus the front desk girl claiming she had done it a week ago). These are extremely rare frustrations, because they are things that our doctors' honestly don't want Bryan or me (or any of their other patients) to have to deal with. So long story short, everything got taken care of and we're moving forward with physical therapy. We're all very optimistic that it will make a huge difference.

Next we talked about Bryan's symptoms. Bryan and I talked about his symptoms prior to the appointment, and we realized that the biggest symptom continues to be the issues with his left side. While this definitely sucks, it means that majority of the other symptoms are improving, albeit extremely slowly. For example, the right side of Bryan's face has been numb for quite a while. We would do "touch tests" on his face, where Bryan would close his eyes while I would very, very lightly run my fingertip over parts of his face. During and immediately following the end of radiation, Bryan couldn't feel anything. So that would mean when we would eat, I would have to tell him if there would be food or sauce or whatever on the right side of his mouth and chin. Well, over the past few weeks, I noticed that there were hardly any times where I had to tell Bryan to wipe his mouth or lick his lips. It didn't dawn on me until a few days ago, and I did another "touch test," but this time with a feather that had made its way out of a down pillow. Incredibly, he could feel the feather almost everywhere I touched, including his mouth and nose.

That was a really awesome moment because whenever I ask Bryan if things are changing or if he's feeling any better, his consistent response is, "Hard to tell." It's been "hard to tell" for over a month, and he's unable to truly tell from one day to the next if things are improving. But I'll tell you what, beyond the mouth and the nose sensation, I've noticed other things improving, too. For example, up until two weeks ago, Bryan's speech was really, really slurred. To the point where I had to truly listen (or is it hear? i always forget the difference) to understand him. People were constantly asking him "what?", especially when on the phone or in a loud setting. Bryan was really self-conscious about it, so when we would go out to dinner with friends or family he would sit quietly and not really participate unless spoken to. And even then, when people spoke to him they had a hard time understanding him. So, overall, it was a tough situation. Well, the clarity of his voice has improved by leaps and bounds the last two weeks. People no longer ask "what?" even when we're talking on the piss-poor quality of my car's bluetooth. However, that's not to say his talking it perfect; it's at about 75% or 80%. And compared to the alternative, we'll take it!

Finally, our doctor said that every single symptom Bryan was experiencing right now is 100% normal. He said that the period after radiation can often be the worst (no kidding!), but that at the six-month mark is when people tend to see their worst symptoms let up more quickly. Bryan's not even two months past radiation, so we're still in the throes of the swelling. Our doctor also said that if Bryan truly felt like he was deteriorating (which he doesn't, and more importantly, isn't), they had a back-pocket option medication called Avastin, but that they would prefer not to use it until they absolutely have to. Avastin is one of those last-resort drugs, because it only works for a few months to a year before the patient's body no longer responds to it. And like I said, Bryan doesn't feel like he's deteriorating at all; he's just annoyed. He just wants to walk better and talk perfectly and get better in general. However, I'd say that the little improvements add up to a lot of good news, and the fact that this is a long road just forces us to be patient and "ride it out."

So that's what we're doing. Bryan's physical therapy starts tomorrow and his next MRI just got scheduled for September 2. That means we hopefully see tumor shrinkage and reduced swelling in a few short weeks. Until then, we're just doing the best we can.

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