Three weeks ago – the patient’s perspective

Three weeks ago – the patient’s perspective

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.

Three Weeks

Three Weeks

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.

Fifteen

Fifteen

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

Two Weeks

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.

Medical Equipment

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 for #4, and Veronica continued her recovery efforts.

Thirteen

Thirteen

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.

New Normal

New Normal

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.

 

Mexican Food Please

Mexican Food Please

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.

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Appointments

Appointments

This morning we went to a PT appointment. Veronica did very well. She had a good conversation with the PT about the three parts of the vestibular system and the work she has to do to get back her balance and get rid of the nasty dizziness.

After the PT appointment, we went for a mile long walk in the SD heat and sun.  We stopped for a simple lunch.  After lunch, Veronica had a follow-up appointment with the doctors.  They are happy with her recovery and encouraged her to keep working.  Veronica is cleared to fly home on Sunday.

Veronica rested while I worked then we took a walk down to the beach.  We walked a long way on the beach and then back up to the house.   Veronica’s fit bit says that she walked 3.35 miles today.  I am going to make brats on the grill now.

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