My Unexpected Adventure with a Brain Tumor–Part 12 (Therapy and Road to Recovery)

After my surprise visit to the ER I was not completely confident that each passing day was going to be better than the last.  I still felt very weak, but wasn’t particularly fatigued.  I tried to practice getting around with my walker every hour or two for a few laps around the house, and after a few more days got support from my husband to get down our front stairs to practice walking up and down our hilly driveway.  Primarily it was my eye that was continually annoying, no matter how often I put drops in.   It was sensitive to light, so I pretty much wore my sunglasses and lucky trucker hat all day long, inside the house and out.

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My post-op uniform.  Photo taken 6 days after surgery.

I continued to eat ridiculous amounts of food while on the steroids, and was incredibly thirsty.  (I was warned that the steroids might make me cranky and vicious toward people, but they didn’t, fortunately.)  The meal train dinner deliveries continued daily for a month, and that was just the right frequency and duration.

On day seven post-op I was finally allowed to wash my hair.  Up until then I was just sitting on a shower chair with a shower cap, and getting my body clean.  Being clean felt good, but washing and combing out the rat’s nest that my hair had become felt REALLY good! (Thanks, Mom!)

 

Ten days post-op I began my rehab and acupuncture routine.  I started 1x/week physical therapy (plus daily rehab exercises at home) and 3x/week acupuncture.   I still felt pretty junky in my foreign body, trying to be out of the house (mainly because of my eye).  I was evaluated by a speech therapist as well, but she did not think that I needed to see her regularly.  Both she and my physical therapist commented that, even though I felt like I had a lot of issues going on, I actually got through the surgery and the stroke-thing with flying colors, considering how much activity had happened at my brain stem.  I suddenly felt very grateful, and my perspective on my discomfort totally shifted.

 

My husband was returning to work the next week, so he put together a Google calendar with all of my appointments, and shared it with the same email list that wanted to help with meals, with hopes that people would sign up to deliver me there and back.  (People stepped up amazingly, and it was incredibly helpful and heartwarming.)  Another site, Lotsa Helping Hands, combines sign-ups for meals and rides, so that might be a good alternative to look into.  (I don’t know if you can integrate that with your own Google calendar though.)

On Day 11 post-op I had my follow-up appointments with both surgeons at Stanford.  They were pleased with how everything went with the surgery, and reinforced how they thought that my facial paralysis was not going to be one of the cases that healed quickly, after all that my facial nerve had endured. I was still feeling like my body wasn’t my own, and was a bit frustrated by how junky I felt in comparison to how pleased they were with everything.  My head scar had been healing well, so they removed the sutures and said to come back in three months(!)  (I still looked and felt so weak and fragile that I couldn’t believe they didn’t want to check up on me sooner, but they were glad to see that I had no dizziness or nausea, no CSF leakage, no headaches, and that I could puff a tiny bit of air into my cheek and try to take a few steps without the walker for the first time.  I expressed my concern about how far out my ear was sticking, and they said that once all of the swelling went down it would probably actually be a little indented, so not to worry too much about that.

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Follow-up at Stanford, 12 days post-op.  Not having too much fun with my eye and my walker.  First day in regular clothes though!

While I’d say that Day 12 was the day I felt most bummed emotionally, not knowing how much longer I was going to be feeling worked-over, on Day 13 I turned a very welcome corner.  I felt like I could absolutely ditch the walker to get around the house, I felt kind of chipper and was enjoying the beautiful weather outside on my deck.  My mom and I put the house back together (returned the rug and coffee table to living room, changed centerpieces from pile of meds to cute home decor, etc.)

I also decided that I was ready to try sleeping in my own bed.  This coincided with the last dose of my steroids, which turned out to be one of the gnarliest nights I’ve ever had.  I was determined to still stick with only Tylenol for pain, and that night, out of nowhere I developed a terrible headache.  I was uncomfortable, worried and stubborn, and started to have CRAZY anxiety/PTSD while I was lying in bed, imagining that I was on the operating table again.  I could feel my heart racing, my head was pounding, and I thought that I’d need the heavy pain meds to get through the night.  I asked my husband to bring me some meditation CD’s (I had borrowed a few that I hadn’t listen to yet), so I tried out a few until I found one that was just the right voice to listen to.  I didn’t even really listen to the words, but I just put an earbud into my one working ear, put the CD player on “repeat,” and let it play over and over and over until it was morning, while I lay there uncomfortably.   I maybe slept a tiny bit, but mostly I just endured discomfort and tried to work myself into a calmer state.  By morning, I was exhausted, but the pain was gone and never returned!  I was pleased to have not given in to the pain meds, and I didn’t even need Tylenol again after that point.  It was an unexpected, rite-of-passage-kind of experience.  I felt like I had walked through fire and made it to the other side…

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Happy to have ditched the walker for good, and to focus on gratitude.

After that one intense, transitional night, every day really was better than the last.  I started to feel like my body was my own, and I was motivated to do more and more for myself.  After staying for two weeks, my mom returned back to her home.  Although the doctors initially said that I wouldn’t need home care once I returned from the hospital, my husband and I (and my mom) were glad that we did things the way we did.  My husband had returned to work, so it was nice for me to have company all day,  and it was reassuring for him to have someone there in case I did need help or had an emergency.  Since I couldn’t really watch TV or read with my vision issues, I was grateful to pass the time with someone.

After about two weeks I tested out to see if I could swallow vitamins, and I could, with some difficulty.  I was taking Vitamins A, B6, B12, C and E, zinc, bromelain, citrus bioflavoids, a half-dose of fish oil, and Arnica pellets.  (I was already able to take the Arnica pellets soon after surgery.)

My kids were very sweet and helpful, and I think a bit worried seeing me so unlike myself for those first two weeks, but I kept trying to check in with them.  I’m sure it was helpful for them to have school as a distraction.  After I finally turned the corner I checked in with them both, and said, “Was this whole thing a lot gnarlier than I originally let on?”  And they nodded.  I told them that I hadn’t wanted to use the words “brain surgery” with them beforehand because they sound so scary, but that that’s technically what it was.  My daughter said, “Wow.  Do you feel like Superwoman now?  Like you can do anything?”  Yeah, kind of.  My son said, “I’m just so happy to see you feeling better.”  They really were troopers through the whole thing.

Each day I was taking it slow, but also feeling invigorated by the feeling of strength returning more and more, and feeling at peace in the quiet of my home.  I focused on gratitude for all of the continued support that I was receiving, for becoming more self-sufficient with each passing day, and for knowing that I was already through the hardest part of this journey.  While there was a lot of back-and-forth and uncertainty in those first two weeks, I was thrilled to feel like I was DEFINITELY on the road to recovery!

 

 

 

 

 

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