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Friday I’m in Love

8 Jan

I’ve been totally MIA over the holidays for more reasons than one.  But in an effort to get back on the bandwagon for 2016 blogging I’ll start with a favorite.

#1

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Winter weather.  And I’m not talking about Florida’s winter.  Last week we were in Sioux City, IA to celebrate Christmas with the Wall side of the family.  I was hopeful in the weeks prior that we would get lucky with some snow on the ground.  We got even luckier.  We arrived on Saturday night and a snow storm rolled in Sunday evening through Tuesday morning.  It was a snowy paradise the whole week were there and we spent a lot of time playing in it!

#2

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Rent the Runway.  If you haven’t heard of this yet, go check it out.  We had a winter wedding to go to on New Years Eve while we were in Sioux City and obviously I don’t have anything to wear to a winter wedding.  So days before we left for our trip I was stalking RTR looking for something appropriate to wear.  THANK GOODNESS I was lucky and they still had some amazing dresses left for me to rent!  This gem was a huge hit and I would have kept it if I had an extra $355 in my bank account 🙂

#3

Children starting charities.  Britton’s cousin’s daughter, Makenzie, and her friends in Kansas City started a 501C3 called Cancel Out Cancer Foundation that hopes to help stop cancer and soothe the pain of families that have been affected by cancer.  Makenzie was a flower girl in our wedding and we are just so proud of the young woman she is becoming!  Check out their go fund me page here.

  #4

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Britton’s health.  I don’t know if this falls into the Friday I’m in Love category here but it is definitely something I am grateful for.  3 years ago this week Britton was in surgery and recovery following brain surgery to remove an epidermoid brain tumor.  You can read all about our journey here.  The whole experience, beginning just weeks after we got married, was the hardest thing we’ve faced as a couple (not surprisingly.) Every year in the first weeks of January I look back and I’m thankful for the doctors, the nurses, our family and everyone that supported us through this time.

That’s all for now folks!  Hopefully I will get back on board and get some more posts up about the holidays soon!

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inspiration

4 Jun

Back in November when I decided to start blogging again I did it for myself.  I was being pretty selfish, using my blog to share our story with our family so I didn’t have to call every friend and family member every time something new came up for Britton and I throughout our epidermoid tumor experience.  I didn’t want to have to tell our story over and over again on the phone and I didn’t want Britton to have to do that either.  By that time we had already spent a month going to doctors appointments and crying on the phone to family and friends and we were already exhausted.

So I started to write about it instead of talk (well I still talked but a little less).  My blog was for me and my family and friends.  What I didn’t expect was that my blog would become a resource for others going through the same thing.  I realized sometime in January that my blog was being found in google searches for epidermoid brain tumor.  My site comes up on the first page when you search it (https://steelewall.wordpress.com/2012/11/19/epidermoid-brain-tumor/). 

Last night I received an email from someone that read my blog simply titled “Thanks.”  It was from a reader that found my blog as her husband goes through a similar experience as mine.  She said our story gives her hope.  The email brought tears to my eyes.  Even if my blog only helped that one person through an experience like this, then I know I’ve done a good job.  It was worth it for me to write it for me but now I see I had an even bigger impact.

And so I leave with this today.  This story popped in my newsfeed on Facebook and I am thankful that our doctor had the courage to cut.  I can’t imagine what it must be like for a neurosurgeon to decide to cut into someone’s brain to potentially save a life.  Thanks to all those who have the courage to do this and to save the lives of countless people that are affected by Epidermoid Brain Tumors.

http://neurosurgery.med.nyu.edu/about-us/courage-cut

and it’s over!

24 Apr

This week was the big reveal for Britton having post opp appointments to clear him following surgery. It was an adventure to say the least. We had moved his appointments around to accommodate closing on our house that was supposed to happen last week but didn’t (much more on that later as i transition to blogging about the entire experience). The weather up here has been bizarre this “spring” and Monday’s forecast was no exception. It rained all morning and snow was predicted that afternoon. As we waited around to hear about our supposed close on the house I began to get anxious with the impending bad weather. Finally, around 3 pm we heard from our loan officer that we wouldn’t be able to close (she knew at about 1 pm) and so we decided to ditch Sioux City and head back up to Rochester.

After taking a pit stop at home to take care of the cat we were on the road by about 3:30.  About 30 minutes into the drive we realized it was going to be one heck of a trek as sleet began piling up on the highway causing a weird slush to form on the road.

snow

We made it to the Minnesota line with little issue but that’s about as far as we went before our 4 hour trip became a 7 hour nightmare.  About 5 miles east of Jackson, MN and at about 5:30 pm, we hit a slick patch of road that sent us into a slow and steady spin resulting in us sliding into a ditch in the median.  Surprisingly, I didn’t panic.  We were spinning so slowly into that ditch that Britton just told me to relax as he reached over to calm my nerves and so I did.  Once we were in said ditch Britton immediately started to get us out of it, rocking the car forward and backwards to get some traction.  It didn’t work.  I was already reaching for the AAA card while he attempted the save.  Mud spewed all over my car.  Our back left tire was in about 8 inches of water and mud and there was no way we were going to make it out ourselves.

ditch

After I had AAA set up with a tow a Highway Patrol showed up to make sure we were alright.  He waited on the side of the road with us with lights flashing while we waited for our tow.  We were in the ditch for about an hour before our saviors, Danver Towing, showed up to get us out of the ditch.  Just a simple pull and we were out.  We had hoped to get ahead of this storm just east of where we landed in the ditch… That was before we were stuck there for an hour.

towing

Once we were on our way again the storm got worse instead of better.  Visibility was WAY down and we were driving an average of 45 mph for about the next 90 miles.  There were even a few times that our car began to slide but going so slow (often as low as 30 mph) we were able to remain in control.  Once we hit Albert Lea the snow turned to rain again and the roads were warm enough that there wasn’t any ice!  Thank goodness!

We pulled into Rochester at around 10 pm and had to stop for fast food for dinner (barf!)  I think we were asleep by 11/11:30 only to have to wake up at 5:15 to make it to Britton’s MRI by 6:15 am.  It was a long night of tossing and turning.  We hadn’t thought much about his appointments since we have been so wrapped up in the house situation but it was hitting me that night.  We would finally get to see how he has progressed with actual documentation, not just our belief of progress.

After his early morning MRI we had an audiogram at 10 am and then our appointment with the neurosurgeon at 11.  We got a print out of Britton’s audiogram results right away and had his last one to compare it to.  It was amazing.  His last audiogram showed he had only 80% word recognition in his right ear.  That was the issue from the start, not being able to discern speech.  This time he had 100% recognition.  One Hundred Percent.  All his doctors said he wouldn’t gain hearing back but he proved them all wrong.  He is a miracle.  Immediately following surgery his surgeon said he would probably have no hearing in that ear.  And now we have proof it IMPROVED!  Britton said they did the entire test through the right ear so he even received instructions through his right ear and he could understand everything!

audiogram

The appointment with the neurosurgeon was next and our trip just got better and better.  We talked with Dr. Link about Britton’s progress and he did a few minor tests to see how his balance was and everything was awesome!  He was as shocked as we were with his audiogram results and had nothing but good things to say about his progress.  We got to look at Britton’s MRI’s side by side to see the change and it was amazing.  Where there was once a bright white tumor (that’s how it shows up in the MRI) now there was black space and brain!  Just as it should be.  There was one bright speck of white that he said we will need to watch over the next few years but nothing of major concern!  Next year we will get another MRI done in Sioux City and have the results sent up to Dr. Link to review.  That process will probably go like that for the rest of his life to make sure nothing grows back but that’s something we can definitely live with!

Our drive home was beautifully uneventful  and we closed on the house this morning.  So what started out as a miserable week has already turned right around!  Thanks to our friends and family for all of their support over the last six months.  We couldn’t have done it without you!

2 months out

11 Mar

I haven’t had much to post about the past few weeks.  Britton has been recovering so well!  The last week in February Britton took his first work trip to Oregon.  He went with a co-worker so he wouldn’t have to lift anything.  His only restriction at this point is the lifting so it’s important that he continues to follow that one rule.  So he left me for 2 days to do business in Oregon.  While he was there he was fortunate enough to be able to meet up with a friend that recently moved out there.  This trip was not at all what we had hoped it would be for his first trip post surgery.  We had anticipated him spending the whole trip with his colleague that would be helping him if he needed it but he ended up having his own meetings.  He started that Tuesday at 3 am and it didn’t end until after 10pm.  Needless to say, he was exhausted by the time he returned to South Dakota on Thursday. 

This morning Britton left again on another trip, this time to Florida.  I feel a lot better about this trip than the last.  He and another colleague are doing every meeting together on this trip.  They have a show to do in Ft. Lauderdale on Wednesday and some other meetings in south Florida.  At the end of the week I am joining him in Florida to spend a week down there visiting friends and family.  This week’s business trip for Britton is a lot more laid back, leaving a lot more time for him to relax without being overwhelmed.  I’m looking forward to a relaxing weekend with him after his second business trip.

In other news, in the midst of Britton’s recovery we decided to go on a house hunt.  We hadn’t really thought much about buying a house but spending so much time cooped up in our apartment, watching HGTV, we got the bug and started searching.  We found the perfect house and made an offer at the end of February.  Following the inspection last week we put in an addendum to our offer and should hear back early this week.

I think back to the beginning of this year (and I am referring to the school year since I am still accustomed to years being determined by school) and I am amazed at how much has happened.  The week we got married, I lost my grandmother.  The week we returned from our honeymoon, Britton was diagnosed with a brain tumor.  Now we are in the process of buying a new house as I start a new job.  Coupled with tragedy we have found the positives.  Last night I posted on my facebook page how truly amazing my husband is and I am inspired every day that I watch him live his life.  We are so blessed and I am so thankful for all of the positives we have in our life right now.  I’m looking forward to sharing some joy this weekend in Florida with my friends and family from the south.

at home

14 Feb

We left the hospital a whole 4 days after Britton checked in and had surgery. We were amazed. Rochester , MN is about a 5 hour drive from where we live in South Dakota so to break up the drive we stopped in Okoboji at Britton’s aunt and uncle’s house for a night.  Britton slept the whole drive which was perfect.  We didn’t want him getting dizzy from watching things pass on the road so I was very glad he was able to sleep.  That night we took it easy, brought food to the house and watched a movie.  We didn’t want to overwhelm Britton on his first night out of the hospital.

The next morning, we spent some time relaxing in the sun room, soaking up some rays.  It is absolutely beautiful at the lake in the winter.  The snow was so pristine and it was so peaceful.  Very different from the summer months when its a bustling town!

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We headed home early that afternoon and stopped at Britton’s favorite place on the way home… Chick-fil-a.  We planned on just pulling through the drive through to avoid any extra stress on Britton but he was up for the challenge of going in and sitting down to eat.  When we did finally make it home Britton went straight to bed for a nap.  He was exhausted after two days of travel and being out of the reigns of the hospital.  At home we were welcomed by a bouquet of flowers from Britton’s colleagues out in Los Angeles.

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My mom stayed with us for another few days to help us get settled back in.  Britton was doing so well that he didn’t need a whole lot of attention.  I had worried he would need more care than he did!  We spent a LOT of time watching tv and movies. January 19th was the annual BPI Winter Party and since Britton was feeling so well we decided to attend.  This meant we also had to head out to the store to pick up a new jacket for Britton.  I am still amazed at how quickly he was able to get into normal routines like going to the store and the mall or walking a few miles outside.  Britton got a lot of attention at the party and after about 2 hours we were both beat and headed home.

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We spent another week after the party together just hanging out and relaxing together.  This was the most amount of time we have ever spent together due to his constant travel.  It was awesome.  I’ll admit, despite the situation, I loved being able to be lazy with my new hubby for a solid 2 weeks… just the two of us. I think he feels the same.  Since he wasn’t in a whole lot of pain or in need of constant care, we were able to just be together.  We are so lucky.

In that last week at home together Britton finally gained the courage to take a look at his scar.  I had been taking pictures along the way, once right after the bandage had been removed, once after the staples were removed and then a week after that after it really began to look like it was healing.  After he saw the most recent picture he took the plunge and looked at the progression.  He got a little queasy looking at the one with the staples but he was as amazed as I am at how awesome it was looking present day (and now its even further along and awesome).

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You can see. It’s amazing. We are so blessed.  And we’re not only blessed because of how amazing his recovery was.  We are blessed because we have so many friends and family supporting us.  We received gifts galore to help us through the quiet times like an amazon gift card, a cookie bouquet and a candy gift basket.  And these gifts came from the most unsuspecting places too!  My friends from Florida, his office and even old family friends that barely know Britton at all!  Thank you to everyone that has supported us and loved us through this adventure!

Britton went back to work one week after me (February 4th for him) and he is still doing great.  It seems Thursday mornings have been the roughest on him so far and the weekends have been busy causing minor headaches.  All  in all, I am impressed and amazed at his recovery.  No travel for him until April (except a short trip to Oregon with a co-worker) so its just office work for him for now.  We are thankful that BPI has been so flexible with Britton through his recovery.  I’m glad to have him home for another month and a half.  Its been awesome having him around.

our hospital stay

31 Jan

After Britton’s surgery we spent one night in the ICU.  I couldn’t bear the thought of leaving him there alone over night so I slept on a cot in the corner of his room.  For the first two hours that he was in there, a nurse came in every 30 minutes to check on him and give him meds.  About every hour or two they would come in and move him around in his bed to avoid bed sores and stiffness.  He was on a Fentanyl drip that he could push a button and be delivered pain medication at six minute intervals if he needed it.  He was also hooked up to an IV, catheter and oxygen.  The first night was a rough one.  Once his family arrived on Saturday morning I left for a nap and shower.  While I was gone they moved Britton into his normal room.

photo 1

We decided to pay extra for a private room since we knew there would be so many family members stopping in to visit him.  His first day out of surgery was a quiet one and he slept most of the day.  He was taking regular dosage of Tylenol extra strength, Oxycodone and a steroid.   His head was still bandaged up and couldn’t wear his glasses so I had to help with dinner that night!

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As you can see, he was so pleased… The spaghetti dinner just wouldn’t stay on the spoon! So he had a lot of pasta on his gown.  Whoops!  That was the only night I didn’t stay in his room in an attempt to get some regular sleep.  It didn’t work.

Beware, the next picture is graphic. This was his incision after the bandages were removed.

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They removed his bandages before 6 am on Sunday morning and I missed his doctor’s visit despite being there at 5:45 am.  That was a huge reason why I never stayed at the hotel again.  I hated missing the doctor’s morning rounds.  By this time he was feeling much more alert and decided to move to a chair next to his bed for some of the day.  Later in the day he felt comfortable removing the catheter too so he could be more mobile.

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By Sunday night he was even up for a walk down the hall with the help of a nurse and his lovely wife!  His dad even recorded his steps so we could watch his progress!

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Sunday night I stayed close by his side on a cot in the corner and was up to help him anytime he needed to move around or use the restroom.  We were so lucky that he was mobile, it meant we didn’t need to call a nurse to help him out of bed.  I was allowed to do that for him.

Monday was another good day for Britton.  His brother Jordan, as well as his aunts and uncles, Diane, Terry, Lee and Kathy, all came to visit.  Diane and Terry brought pizza and brownies although chocolate tasted funny to Britton.  I took a break with my mom while Britton visited family and got out and about for a few hours.  When I returned everyone was in the family waiting area watching the BCS championship and chowing down on pizza.

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While Britton was making great progress I had a few concerns.  He just wasn’t himself.  Sounds silly too, I realize, after surgery who would be their usual self?!  But I talked with the nurses to make sure it wasn’t abnormal.  Everyone knows Britton has a great sense of humor but it was gone and I was worried.  The nurses were very glad I addressed it too because they don’t know what their patients normal selves look like.  What we did find was that Britton was trying to go without as much pain medication as he probably needed and that made him more agitated than normal.  He didn’t get back to normal for another week or two but I was very glad to have discussed it with the nurse just to make sure something wasn’t wrong.  Our doctor said that the brain has a funny way of coping with something as traumatic as surgery and for Britton it was coping in this way.  He was short, never smiled and definitely never laughed.  Everything bothered him and no one could do anything right.  It was tough to watch but I am so glad he is back to normal now.

day of surgery

16 Jan

As you can probably imagine, it’s been a busy week and a half.  So tonight I am finally getting back to my mission to blog about this whole experience.

January 4th, when I wrote my last post, I was in the waiting room of St. Mary’s Hospital up at the Mayo Clinic.  Britton entered the OR at approximately 8 am and surgery began at 9:23 am.  The family started out in a large waiting area where we had access to a message board giving minimal updates on patient progress.  Before the surgery began they had his room ready in the ICU and moved all of us up to a family waiting area outside the ICU.  It was actually very nice!  We had a whole room to ourselves complete with a kitchenette.   We had a specific nurse communicator that came in to give us updates about every 2 hours.

waiting room

At about 10:30 am the nurse communicator came in and told us he was done with surgery.  I stood up and told him that couldn’t be possible.  He looked back at his notes, obviously confused and soon asked for my name.  We quickly realized he was referring to another patient, who was also wearing a grey sweatshirt, hence his confusion!  I thought Janet might have a heart attack!  I think she was pretty sure there had been complications since we knew we shouldn’t be getting another update for about an hour.  About 30 minutes later the nurse communicator came back with a real update.  Britton was under the microscope and he would be for the next 5 hours.  That was really the only update we would get, every 2 hours they would tell us he was under the microscope (whatever that means.)

Britton came out of surgery at about 4:30 that afternoon.  Janet and I headed downstairs to talk with the doctor about how surgery went.  It was tough talking to the doctor and still not being able to see our baby.  Britton’s surgery went well but the tumor was very tough to remove.  The doctor spent most of his time trying to unwrap the tumor from all of the nerves in Britton’s brain but he was confident they had been able to remove 99.9% of it.  Great news.  However, he wasn’t sure about his hearing.  Dr Link told us they were unable to get a good read on that nerve the whole surgery.  He was doubtful Britton would have the same function in his right ear that he had prior to surgery.  Speaking with the doctor was both terrifying and exhilarating.  It was tough to know how to feel about it.

Britton stayed in the recovery area for a long time.  Longer than he should have which is another story for another night.  At about 6 that evening I finally asked the nurses in the ICU where he was and they gave us an update that his blood pressure was too high and they had to get that regulated before he could come up to his room.  The news had us a little worried but we kept up the positive attitudes and played some games to pass the time.

At approximately 7:30 pm we were finally notified that Britton was in the ICU and his family was welcome to see him.  I had never been in a position like this before.  I had never seen a loved one go through serious surgery or witness any loved ones coming out of anesthesia.  When we first saw Britton it was hard not to be upset.  He yelled out in pain and I couldn’t hold back my tears until he turned to me, no glasses on to see my face, and said “I love you.”

While the wonderful nurses worked to get Britton’s pain under control the family all came in to see him and wish him well before they all headed out to dinner, acknowledging the fact that Britton wouldn’t be able to communicate anyway and would soon be so hyped up on pain meds he probably wouldn’t remember them.  Janet and I stayed put and I vowed to stay the night.  It was a long day and an even longer night but I was happy to have a cot in the corner of his room to keep watch over him all night.