An Inconvenient Tumor

Last week was spent in heightened anticipation for Bryan's first physical therapy session. It turns out that people with brain tumors can't just go to regular physical therapy; there are specialized neurological rehabilitation programs with therapists trained to assist in the recovery of brain tumor patients. So after several phones calls and messages to various rehab centers throughout Los Angeles, we ended up back where we started: at Cedars Sinai's neurological rehab center.

Given that Bryan wasn't feeling all that well over the past few weeks, we were very anxious to get him into rehab. As each day passed and his left arm and leg became weaker and weaker – despite our mini exercises at home and daily walks – it was increasingly important to Bryan to begin a regimen in which he could work hard to regain muscle movement. He needed a specialist, not just me helping stretch him out and give him mini massages when his muscles got tight. That was great and all, but I'm no trained specialist. So, we waited all week and finally Friday came. It was time to go to therapy.

Our appointment was at 8:30am and just like with any other doctor we've visited at Cedars, the experience and transition from department to department was flawless. As I mentioned in a post very early on, there is nothing worse than going to doctor after doctor and having to re-tell your story. It's tiring, it's stressful and it just adds unwarranted stress to an already-stressful situation. That said, Dr. Jodi, our neurological physical therapy specialist, had done her homework. She had read every chart from Bryan's visits to his neuro-oncologist, radiation oncologist, his results from the MRIs, etc. She took us through a run-down of everything Bryan had experienced since April, which made it very, very easy on us. So we thank her for that.

After going through the history of Bryan's treatment regimen and symptoms, Dr. Jodi began an extensive run of physical tests to gauge Bryan's coordination, strength and overall sensation. She had Bryan pull her towards him as well as push her away with each individual arm and leg. She had him extend each arm and leg to see how straight they were as well as how long he could hold them in the air. She had him rotate his ankle and try to wiggle his toes. Each of these feats were a no-brainer on the right side of his body, as that side has not been affected by the tumor or radiation whatsoever. The left side, however, is the problem.

Dr. Jodi let us know that the issue Bryan was experiencing did not have to do with his strength. Despite some muscular atrophy in his left arm and leg, he was still a very strong man and was able to perform all the strength tests with relative ease. The problem was with his coordination. Apparently, the tumor and swelling from the radiation has affected the order in which Bryan's brain "turns on" his muscles. For example, where a "normal" person's brain might typically send signals to the thigh muscle, then the knee joints, then the calf muscles, then the ankle, the foot and so-on, Bryan's brain is sending signals out of order. As a result, his walking and movements on the left side resembles a "start-stop" motion. It's jerky and his leg and ankle have a tendency to buckle and give way. When a 175-pound man starts to fall on pavement, on wood flooring, on carpet, or as I mentioned, a barely-slanted driveway, you know it's time to get some walking assistance. Especially given that fact that it was becoming nearly impossible, not to mention a bit overwhelming, for me to monitor Bryan's every single move, every single minute. Falling was becoming a major concern, and I refused to risk his safety just because I couldn't balance a shopping bag, my purse and my husband while walking through a store.

Despite Bryan's initial protests, Dr. Jodi had Bryan try out a variety of walking devices that would help with his independence and mobility. He was none-too-thrilled to be trying out a cane, then a one-armed crutch, all coupled with a funky-looking ankle brace extending halfway up his calf. At first, it seemed like a cane or a crutch would help Bryan with his consistently "tipsy" balance. However, we soon realized that having support on only one side wasn't going to work. Bryan's coordination issues extended throughout the entire left side of his body, affecting his core muscles and stability. Dr. Jodi remarked that when Bryan walked, it was as though his body was a "wet noodle." That was personally an "ah-ha!" moment for me (thank you, Oprah), as I had noticed that my husband's (sorry, I just love using that word) coordination was suffering but couldn't put my finger on exactly why. I'm not a doctor, so it was great to learn the reasons for Bryan's mobility issues.

Our appointment lasted an hour and a half and was extremely comprehensive. Dr. Jodi showed us a few different ways for me to assist Bryan while walking, so I could both be able to balance myself as well as be there for him in the event that his ankle gave out. This was helpful although we had pretty much mastered the art of "tandem walking" a few weeks prior. So we've incorporated the new moves into our routine.

The next steps were for Dr. Jodi to contact our neuro-oncologist and provide her recommendation for Bryan's physical therapy regimen. She told us she would like him to start an intensive course of physical therapy, occupational therapy and speech therapy as soon as possible. Upon our neuro's approval, we will being scheduling appointments and getting Bryan on a rehab program.

In the meantime, Dr. Jodi told Bryan to think about the various walking devices he had used and decide which one he would like to order. Truth be told, he didn't "like" any of them and felt really strange using them. But the bottom line is that he needs assistance and an opportunity to focus on his walking and his balance on his own. So, instead of a cane or a crutch, which again, don't help stabilize Bryan on both sides, I asked him what he thought of getting a little walker for inside the house. We have hard wood floors and it would be easy for him to move around independently without getting caught on carpet, rugs, etc. At first, he balked at the idea, saying "I'm not a friggin' grandpa! I don't need a walker!" There was a really big psychological barrier for Bryan accepting the use of any walking aid except for me, because that meant that something was actually wrong with him and that he was accepting defeat. Forget the fact that he's gone through a crazy regimen of chemotherapy and radiation, because he did that on his own two feet and without any help except for that of my steady hand. Actually accepting help from a device that was meant for truly injured or crippled individuals was almost too much for him to consider.

Well, after several long, long, long conversations and pep talks about how walking aids are going to be temporary, Bryan said he would consider it. Well, fast forward to the next morning, at 3:15am. It wasn't so much morning as it was the middle of the night. Bryan got up to go to the bathroom and, while turning the corner into the bathroom, rolled his ankle, lost his balance and took a dive, face-first, into the hard wood floor. He hit his back and side on the wall on his way down, and made the loudest "KABOOM!" that I've ever heard. I don't even remember getting out of bed or running to his side; it was like I flew, because all I remember is being on the ground next to him and making sure he was okay. Until that point, the one thing I hadn't been doing was helping Bryan to the bathroom every night. This was for a few reasons. One, the steroids take a toll on your bladder and make you have to pee, well, pretty much every hour or two throughout the night. If I had snapped to attention with Bryan every hour, or every other hour and helped him to the bathroom, I would have been beyond sleep-deprived and useless in helping him during the day. Two, he was able to get there on his own and make his way while holding onto the wall or the door. Dr. Jodi had warned Bryan, just earlier that day, that leaning to hold onto doors and walls was not only worsening his walking abilities (he would lean towards the wall, not walk towards the wall) but was actually dangerous and could result in a serious fall or injury. I had been telling him the same thing and monitoring his walking so it was actually walking and not leaning, but apparently when he made his way to the bathroom at night, all bets were off. Well, it was like God or someone was trying to send a message when he fell. We got the message loud and clear. After I helped him up and checked him for cuts, bruises, scrapes, etc., we made the decision that it was time for some help.

The next day, I called my dad and asked if my grandparents had any extra walkers. Between the two of them, they have survived two hip surgeries and a severe bout of colon cancer. They went through extensive physical therapy and had four types of walkers for Bryan to choose from. They used them during their recovery but don't use them anymore, which sent a message to Bryan that if my 85-year-old grandparents can heal and rehabilitate from walkers to canes to independent movement, so can he.

So, last Saturday, we made our way to my grandparents house, where it was like a walker convention. They had the quintessential walkers with tennis balls on the back feet, the walker with plastic coverings to avoid scratching the floor, and even one that I like to call the "four wheel drive" walker. It's fire engine red, has four big wheels, a seat for resting and a basket on the front. It's the coolest walker around. Bryan spent a few hours testing out each walker and believe it or not, he was zooming around the house. He was able to balance himself, walk straight and lost almost all resemblance to a wet noodle. It was funny to watch, as my dad, my brother and my grandparents were the judging committee, remarking on Bryan's performance with each walker. At the end of the day, he settled on two: the fire engine red and the tennis ball walker. We thanked my grandparents, who I think were secretly happy to be rid of the walkers, and went home to try it out.

Since Saturday, Bryan hasn't had a fall. He hasn't even come close. He's been scooting around our apartment with his tennis ball walker, taking it from room to room with him with the greatest of ease. He's doing better, his attitude is better and he's feeling more independent (the entire point of the exercise!). It also gives me a break from having to watch him like a hawk, as he's actually training himself to walk straight, stand tall and not lean on the walker. Whereas last week he could barely stand up on his own, this week he's not only standing with this the walker, he's actually picking it up, pivoting and moving in different directions. It's been fantastic. We even went to our friend's house for dinner last night and Bryan was able to hang out and move around with the guys in the living room while my friend and I got dinner ready in the kitchen. It had been months since he had been able to confidently be apart from me and truly move around on his own. I was so proud of him and he's now making regular walker jokes. It doesn't seem scary or embarrassing anymore, because he knows it's helping retrain his body to walk the right way.

We don't take the walker everywhere, but it's sitting right by our front door for Bryan to use the moment we get home. Like I said, I can tell a difference as recently as yesterday. Between Bryan's renewed focus on walking and his increased steroids (he went from 2mg/day to 4mg/day), he is feeling a bit better and there is noticeable improvement in his talking and walking. He's more energetic, gets dressed a tiny bit faster and can even make his way from the bedroom to the bathroom to hang up his shower towel all by himself. These are things that so many people take for granted every single day, but they are major milestones for Bryan.

Whereas last week was a bad week, this week is a good one. It's a testament to the roller coaster nature of this disease, but we take it as it comes. And as long as we're able to appreciate and maintain perspective on the little things, like an independent walk to the bathroom, we're in business. No pun intended.

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