I’m four and a half weeks post-surgery and people from our parish continue to pray for us, ask how we are doing, and offer to help/support us however they can. Recently, I’ve been able to personally tell a few of them how grateful I am that they take the time to check in with me. As Jake mentioned in a past post, if you look at me, you can’t even tell I’ve had surgery. Pre-surgery me had thought I’d be back doing most of what I did before by now, but post-surgery me now understands just how long retraining my brain is actually taking.
Jake and I are part of a ministry at the church that serves the 4th-6th graders by organizing social activities once a month. In addition, I was invited to join the Family Formation Core Team, which meets monthly to pray for the parishes using the Family Formation program, discuss the various ministries at the church that reach the elementary school age kids, (including the one we’re involved in,) and pray for each others’ intentions. I’ve been MIA for the last several meetings, but the Core team has been lifting me up in prayer. Today, this beautiful spiritual bouquet was delivered to our house. On the back of the flowers are the prayers and words of support from members of the Core team. Once again, I’m so humbled by the beautiful show of support for me and my family while I’m on the road to recovery. 💗
I had my first PT appointment on Friday and have my second one, tomorrow. The assessments I went through were comical. When you only have one balance nerve to keep you upright and you close your eyes while standing with one foot in front of the other, you fall over. When you close your eyes and turn your head from side to side, you fall over. When you try walking with your eyes closed, you can’t walk in a strait line and your physical therapist has to stop you before you run in to anything. Looking at my current abilities, I suppose there are two reactions I could have had – laugh or cry. I chose (and continue to choose) to laugh.
Based on my performance, you can probably guess what kind of exercises I was given to work on. Twice a day, I need to stand with my feet staggered, eyes closed, and move my head. I also have to turn 45 degrees and then back to my original position with my eyes closed. During testing, the therapist saw that my eyes make a slight jerky movement when they move from right to left. She gave me an eye exercise to work on that issue as well.
As part of the review of the appointment, my therapist asked how realistic I thought it would be for me to work on the exercises she assigned on a daily basis. My response was, “I’m extremely motivated.”
It’s hard to believe that these were taken three weeks ago.
Before I was wheeled into the OR, Jake whispered, “I love you” one last time into my right ear. Hearing those words in that moment gave me a last boost of courage to face what I knew was going to be a very rough 24-48 hours. When I woke up from surgery and looked at the clock on the wall, the entire wall fell to the side. This happened every time I opened my eyes. It was nauseating. Yesterday I walked three large laps at the mall with my mother-in-law and today I walked around our block on my own. It is amazing how quickly our brains can adapt to major change.
I’ve been reflecting back on the last three weeks a lot lately. So much has transpired in such a short amount of time. I had brain surgery and was discharged from the hospital three days later! That blows my mind. When I left the hospital, I was still dizzy, and not completely balanced, but mostly capable of walking on my own. That blows my mind. The prayers and emails, texts, and blog post comments continue. That blows my mind. (And also makes me smile.)
There have been a few people throughout this ordeal who have told Jake that they started praying for me after not having been to church or praying in years. Others have shared that reading about what my recovery has entailed has caused them to “reset” so to say and not take for granted the simple things in life that they are able to do without thinking twice – walking, picking something up off the floor, driving kids to and from. I’ve even heard that kids have told their parents they are praying for me (without any prompting.) <Insert my tears here.>
After I was told I had a brain tumor last fall, I began to pray for healing. It seemed like a logical prayer request. Little did I know I should have been more specific. God saw it fit to start healing areas in my life that I didn’t realize needed healing. It took facing Norman to bring me to a place where I could see that my perspective on certain relationships needed a major adjustment and helped me realize areas in my life that were broken. It has been hard – probably the hardest six months of my life, and I know He’s not done with me yet. But I’m grateful for the chance to see how God is using it all – my diagnosis, surgery, and recovery, in ways I never imagined.
We have tried to have a normal week as a family. It went pretty well aside from #4 and #2’s medical care needs. A while back I had a conversation with one of Veronica’s cousins about what kinds of things people post. Somewhere he had heard or decided that opening a bottle of ketchup is something that is post worthy, otherwise posting about normal life can get boring. I feel like I am at that point. We didn’t open any bottles of ketchup this week, but a number of normal things happened.
We have asked #1 and #2 to use their alarm clock rather than relying on us to get them up which has resulted in a much more orderly morning routine. #3 felt a little left out of the 6 am alarm, so #1 and #2 now wake her up when they are awoken. #2 is a little reluctant to rely on a machine to make sure he gets up on time. It was interesting to see him think about the risks of this change. We didn’t tell him that we would get him up if the alarm clock didn’t work. I am hoping he figures that out on his own. I have been happy with how both #1 and #2 have taken ownership of this. On Saturday #2 had a basketball tournament, and the rest of us went to a birthday party. It was good to be out and see friends. #3 went to another birthday party in the evening.
Somewhere along the way, I caught a nasty bug. So I have quarantined myself in the basement bedroom, and my Mom came back to the house to help with the kids. She has continued to help Veronica by taking her places for exercise and therapy and encouraging her. It has been a good change of pace for Veronica to have someone to talk to other than me.
Veronica told me this morning that she can tell a difference in her energy this week as compared to previous weeks. I am glad she is starting to recognize these improvements. It has been disheartening to not be able to share the joy with her of all of the progress that I have seen because she has been in the thick of it.
More of the same today. Veronica had a major pain in her head this morning but only needed Tylenol to feel better. Shecklets #2 and #4 continue to get better. #4 hasn’t complained about her skin at all, and it seems to be receding now. Overall a normal day on the path to recovery with walking and vestibular exercises.
After the last two days of excitement and exercise Veronica had a low key day today. We didn’t go out for any walks. #4 hung out near me or Veronica all day, so we could monitor her condition. She worked on her computer while I did work on mine. Her skin looked the worst this morning, but it seemed to be getting better by this evening. The doctor said that it will take 3 days for the meds to leave her body. Hopefully tomorrow Veronica can get back the focus on her recovery.
Two weeks and counting. Veronica has avoided using any pain medication for 48 hours. That’s not to say she has no pain, but when she isn’t laying down the pressure in her head is minimal. Today we went to Northtown Mall for some walking. Veronica made two loops around the mall, then at home she took a well-deserved nap. She is working on the balance and dizziness and she is diligent with her therapy. One of Veronica’s vestibular exercises requires this complicated medical device. She has to try to keep her eyes trained on the ‘X’ while moving her head and neck.
Vestibular training ‘X’.
While we were in California, my mom had to take both #3 and #4 to the doctor because of different symptoms. Shecklet #4 was put on an antibiotic for an ear infection. Tonight at dinner Veronica and I noticed what we thought was wintery, dry, irritated skin on her hands getting worse and some other signs showing up on her torso, face, neck, arms, and legs. Veronica had an anaphylactic reaction to this same medicine a few years ago which brought back memories and stresses. I briskly but calmly took #4 from the dinner table and went directly to urgent care. She didn’t have any breathing complications and the doctor confirmed that she should not have that medicine ever again.
Overall a productive day, we now know one more way to better care of #4, and Veronica continued her recovery efforts.
Veronica was able to sleep for 12 hours last night. I wasn’t able to sleep very well after the Eagles pulled off that win, but I was able to get all 4 of the Shecklets off to school on time. We found a good PT option for Veronica and we have made requests for the correct approvals. Veronica and I picked up Shecklet #4 after school and the three of us went to Target to get in some walking. Half of the way around Target Veronica ran out of steam. We grabbed a few quick groceries and went home. I left Veronica and Shecklet #4 at the house while I picked up #1 and #3 from the bus stop. When I got back to the house a great friend of ours was over to spend time with Veronica; it was good to see her. I picked up #2 from basketball practice and we had Chipotle for dinner. Veronica has fought a good fight against the exhaustion today. She has rested a little but she didn’t take any naps. Hopefully, she is able to sleep well again tonight.
Many people have asked me how Veronica is doing. My initial and honest thought that comes to mind is how happy I am with all of the progress that she has made. However, this makes me feel like I am hiding some of the facts. While I am truly impressed by the progress Veronica has made, the reality of the known and unknown side effects of the surgery are hard to watch. I know that Veronica is hopeful that she will continue to get better, and she is working hard. We won’t know how well she will recover or what her “new normal” will be for a year or more. The fact that she won’t be the same is stressful for her and she is anxious about what her new normal will be.
Veronica is tired of being in recovery mode. We know there is a long way to go, but these first two weeks have been exhausting. My hope is that being at home with the kids will give a new perspective. We are going to miss sunny SoCal.
One of the most frustrating things about this tumor has been the lack of outward signs. Right now as I look at her across the room she shows no sign of pain or extreme dizziness; even the scar from her surgery is hidden by her hair. I know that the normal things that she expects to be able to do are not as easy as they used to be. Some may never be. For example, yesterday she washed her hair and was so exhausted afterward that she had to take a nap. The effort needed to function day-to-day coupled with the unknows of how close she will be able to get back to her usual routine makes her sad and frustrated.
When you look at the picture below of her you wouldn’t be able to tell the agony on the inside. Like many people who suffer silently, Veronica is unsure about how to share her struggles. She shared this quote with me, “The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are.”
Veronica is now and will be for an unknown amount of time, suffering from extreme vertigo like systems. She is dizzy and unbalanced. When she moves her head the whole world around her moves and then it doesn’t stop moving from her perspective until long after she has physically stopped. When she is able to sit still, her vision of the world is shifting and slanted. She has a massive headache and moving her body is nauseating. Unfortunately, the most effective way to get better is to move her body. When she does fight through the nausea she gets tired very quickly.
There are also sensory challenges. Veronica is trying to live in a mono world. Now that she is deaf on her right side, her left ear and the corresponding part of her brain need to do all of the audio processing while also trying to pick up the balance work from the right side. The three ways your body balances are through your inner ears, eyes, and the bottoms of your feet. 1/6th of this system was abruptly removed and the other 5 parts need time to rebalance and organize their efforts. Her brain needs to understand these changes. All of this causes light and sound to be overwhelming. It is hard for her to focus on particular sights and sounds.
Many people have offered to help us in many different ways. We truly appreciate the prayers and works that everyone has done for us. Please know that Veronica has a long way to go, and we appreciate your continued support and promise to let you know what help we need as we figure out our new normal.
The doctors advised us to avoid using Tylenol for an extended period of time. Veronica wants to minimize her pain and minimize her use of Tylenol. Last night was tricky, the pain kept her from sleeping well and early this morning we decided to take some of the prescription pain medication. She was able to rest-in through some of the morning while I worked. I say rest-in because she wasn’t really sleeping.
Later in the morning she got up and had some cereal. After breakfast, she contacted the PT back home that she found a few weeks ago with vestibular therapy training. Finding providers and reviewing medical coverages is challenging enough without a horrible headache and persistent dizziness, but she got it done.
We are very thankful for many of the side effects that Veronica hasn’t experienced, but the list of things that she is affected by is still very real. One of the side effects that Veronica is dealing with has to do with taste, she doesn’t really taste much on one side of her tongue. She says that food has a metallic taste. Knowing this, when Veronica awoke from her late morning nap and asked for Mexican food, I jumped into action finding a place. We are in Southern California, so it was more a problem of narrowing down the choices. I found 4 places within short talking distance.
We walked to a place called Galaxy Taco in La Jolla Shores. The food was good, and the sun was warm, and the breeze was nice. Veronica is beginning to be able to handle more sensory input like this with less discomfort. Right across from our table was a shrine to Our Lady of Guadalupe. On the walk home after lunch, we stopped to look at this interesting flower. Dr. Suess must have been inspired by these.
