The Whole Story: Part Eight - Beginning the Journey of Recovery


     Recovering from brain surgery is serious business. While technically I could walk, when we were in the hospital I not only used a walker, but they also put something called a gait belt around my torso that my husband held on to just in case I tripped or lost my equilibrium. They sent us home with this, but we didn't really need to use the belt at home, I only used the walker. It was very strange needing to use a walker to get around the house. It wasn't as if I had injured my hip or my legs. It was simply that without it I might tip over. Everywhere I went, people were watching out and hovering over me. I know I was very blessed to be cared for, but I am an introvert, and that can be very overwhelming.

Recovery also takes a lot out of you, more than you realize. I was always tired. I'm one of those people who cannot sleep sitting up. Not in a car, not on a plane. It just doesn't happen for me. But after brain surgery, if I was sitting on a couch visiting with someone or watching TV it would not be long at all before I was out cold. I had no control over it, and I found it rather embarrassing. Thankfully, everyone seemed to understand. I've never been a morning person, but that was even more so now. I had to wake up multiple times a night to take medicine so by the time morning rolled around I was not ready to get out of bed. It was unusual to find me up and about before 10:00 AM.

We were so blessed in this season by friends and family who brought meals or gifted us door dash cards. I have been the primary food preparer in our household, by my choice, and it was such a relief to not have to worry about this. If / when I have to do this again, I hope I have enough warning and feel well enough to be able to stock the freezer with some easy to fix options that my husband can handle, but this time around that just wasn't available. I still feel bad that when people came by to drop off food I wasn't able to come and visit with them, but I hope they understand. It's amazing how much energy being social actually requires of us. It was a stretch for me to even spend time with the people in my household and occasionally my mom.

In the month leading up to surgery I spent some time on the Internet reading about what to expect and ways to best facilitate my recovery. One of my takeaways was that neck pain could be a significant issue and that I should be sure to engage PT as early as possible. My surgery was over six hours long, and during this time I was face-down with my chin to chest and neck extended. Between that and the unavoidable damage to the muscles from the craniotomy, you can imagine that my neck hurt! The PT was supposed to be set up for me before I left the hospital, but as with many things in our health care system, there were some complications and so I fell through the cracks. It is so important to be your own advocate and/or have someone advocating on your behalf. My husband has been an amazing help, and together we make a great team on this. We followed up and followed through, and a week after I came home from the hospital someone came to do an in home PT assessment. They determined a course of treatment and some basic exercises for me. The plan was for them to come twice a week for a month or two. I also followed a few blogger recommendations and ordered these ice packs from Amazon. They are definitely on the pricey side, but if it's in your budget, they were wonderful. The exercises and ice, in combination with the pain meds I was taking, helped quite a bit with the neck pain, but as we were soon to learn there was more behind it so they were not going to be fully successful.

Church is so important to me, and though I watched from home that first Sunday, having been home less than 48 hours, the next Sunday I was there with bells on! Ok, there were no bells, but I did use my wheelchair. I was still using the walker most of the time at home, but for this outing and all of the stimulation it promised, the wheelchair seemed best. I know I've posted on here about being a ambulatory wheelchair user and the pros and cons that come along with it. As much as I believe in it, and I am an advocate for it, I still feel so awkward. When people see me and they know I can walk but then I'm in a wheelchair I just feel like I have to explain myself all the time. At least this time, I had just had brain surgery, so I kind of feel like that's the catch all excuse! I've also been gleaning some encouragement from my handicap parking space church buddy, Aaron, about using the mobility aids we need. He has a neurological disorder and walks most of the time, but not always, with a cane. He is also a wheelchair basketball enthusiast. I think I have a lot to learn from him. I had a wonderful time at church, and it was a really great experience. I got the opportunity to chat with a few folks afterwards. You never know how things that seem so simple to you can actually affect others. One of the people I spoke with that day shared with me, months later, that our conversation was a turning point for her that pulled her out of a dark depression. I was just bopping along doing the best I could, I'm so glad that God can use us even when we don't know it!

The next Tuesday was our post-op appointment with the neuro surgeon’s PA, Katharine. Things had been going pretty well at home. I was even getting to the point where I could use the walker less and just hold on to furniture and walls as I made my way through the house. The neck pain bothered me, but we already had PT on board to help with that, so I kind of figured that had been dealt with. Katharine checked over my incision and when everything looked good, she removed my sutures. We got a bill of good health and were told that the next step would be to come back in August to do some MRI's and our final post op.

Another very helpful recommendation I had gotten from blogs I had read of others going through brain surgery involved our shower setup. So, before we even went to the hospital for surgery, we had ordered and assembled a shower chair that fit in our shower and my husband had installed a shower head on a hose that could be held and maneuvered. I can't tell you how helpful this was and how grateful I was to have it set up when we returned home from the hospital. In the beginning, my husband helped a lot with showering me, then he sat in the bathroom in case I needed him, and as I got more proficient, he became comfortable sitting in his office because we have a speaker system set up in our house where I was able to page him if necessary. That Thursday, I washed my hair thoroughly in the shower. It seems a strange thing to remember, doesn't it? But, as I was sitting on the couch later visiting with my mother, I was running my fingers through my hair noticing that it had dried, but there was a very damp patch near my incision. I have to back up here and tell a story on myself.

I am a fiercely independent person, as my family will be quick to tell you. As much as I appreciate being cared for, sometimes it can be grating, or downright overwhelming. My husband had been very persistent about keeping an eye on my incision. Now in hindsight, this seems like a very good thing. My incision was in the back of my head. There is no practical way for me to see it. I couldn't even feel it that well, and realistically I wasn't supposed to be touching it that much anyways. So, probably once or twice a day, my husband asked if he could check my incision. The reality is it was probably once or twice a day. It felt like it was every time I turned around. It felt like nagging. It felt like he was looking for trouble that wasn't there. It was driving me nuts! At our post op appointment on Tuesday, Katharine had asked us to send her pictures of my incision on Friday so she could see how it was doing after the sutures had been taken out. So, on Thursday morning when my husband asked if he could see my incision, I said, "Katharine doesn't want pictures until tomorrow, you can look at it then." I was tired, I was grumpy, I was in pain. I was overwhelmed. I was probably drained because I was trying to be social with my mother. But, of course, this time there actually was something to see.

So, I felt something damp where there shouldn't be and I had a sinking feeling in my gut. I called my husband to come out into the living room and asked him to take a look. To his credit, he didn't even tease me about how he had asked not an hour before to do just that. When he spread my hair apart and looked at my incision I heard a sharp intake of breath and, “Uhoh.” How I hate that phrase.

Here’s the Thing: Nothing in life is guaranteed. I know it’s cliché, but cliches become cliches for a reason. One of the most important things this whole experience has taught me is the value of being present. I am so much less likely to be worrying about what's coming next or stressing over that thing that happened before. Whatever's happening now, I'm all there. Tomorrow isn't guaranteed. Be present today!

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