Journey Continues

I have had so many people checking in with me, and thought it would be an appropriate time for an update. I am now 5 months out from surgery, and happy with the progress of my journey. Although progress feels at a stand still sometimes, I continue to remind myself where I started. If you see me in person, all appears great. However, inside my head there is a constant storm that continues to be frustrating, painful and uncomfortable. We continue to hope for positive progress and change with all of the side effects from having surgery on a major cranial nerve, and understand that patience and positivity is key to feeling better. I work hard each day not to focus on or display the things that continue to challenge me internally. 

CELEBRATIONS

• So much improvement and confidence with my balance! I can stand on one leg and put pants on without having to sit down. I couldn't do this before surgery.
• I'm driving (patched)!
• I have taken the year off from teaching to focus on my recovery, reduce stress, and to be fair to my students. I have not regretted this decision, as each day can tell a different story.
• Even with continued eye issues, so grateful that I do not have other palsy or tracking issues with vision.
• A new house (+ projects) with nature surrounding us.
• A new tattoo, full of hope.
• People who continue to check in, pray, and support. Thank you for your love!
• I am here. I am here. I am here.

FACIAL NUMBNESS

• There hasn't been any change or gaining feeling on the entire left side of my face (1/2 my face, 1/2 my mouth, side of my head, inside my ear). One year is still the timeline to determine if this will change or stay.
• Because I can't feel my eye, it has suffered some pretty serious scratches (on the cornea) that add additional blurring. I have to be very careful, and continue to add lubricating drops multiple times a day.

VISION

• My neurosurgeon says that months 4-6 tend to demonstrate the greatest improvement in vision. Currently, I have not noticed much change from month 1, but hope for positive change moving forward. 
• My double vision and blurriness on the left is still at a 45 degree angle. This can be exhausting.
• I still wear glasses that have a filter on the left to block the vision from that eye. The surgeon wants me to try and not wear them as much as possible. This can be challenging, as it creates dizziness and head aches. It makes me feel really drunk without the influence :)
• When I am not wearing my glasses, it creates a pretty intense burning sensation behind my eye, which also creates a blood shot eye. I'm not sure if this means the muscles are working extra hard on correction or not. Doctors didn't seem to have an answer for this.
• All of this is caused by damage to the nerve that controls the muscles.
• I am told, if things don't correct themself - a surgery is possible where they go in behind the eye and adjust muscles. I'm not so sure if I would pursue this. Yuck.

NERVE PAIN & PRESSURE

• Several electrical type shocks happen every hour. Although brief yet painful, this is hopefully a good sign that the nerves are sending signals. When the bad ones strike, I just close my eyes and let them pass.
• Week to week, the location of the shocks changes, from the top of my head, side of my head or my mouth, etc.
• There is constant pressure and burning sensation in my head, particularly behind my eye that creates discomfort. I am told, this has a lot to do with the damage to the cranial nerve.
• My temple carries the majority of the pressure. This pressure never really goes away, feeling constant head aches that the common pain killers don't touch.
• There is a general soreness inside my head that remains constant.

EAR ISSUES

• I have lost hearing in my left ear three times since surgery, all due to extreme fluid build up.
• Sometime I feel like I'm in an airplane, because my ear have to be popped all day.
• I had one procedure called a myringotomy, where they drill a hole in the ear drum, and suck out the fluid behind it. Moving forward if this continues, I have been provided a kit where I have to mail in the fluid sample. They want to rule out infection or the possibility of spinal fluid (since I did have a spinal drain after surgery).

JAW MISALIGNMENT

• My lower jaw sits to the left side, and I am unable to move it to the right.
• The top and bottom jaw do not connect like they used to.
• Again, this may be caused by nerve damage, because our nerves control our muscles.
• Eating and chewing is tiresome. There is some food I have to avoid - anything crunchy or really chewy or that requires extra chomping. Of course this doesn't stop me from eating some candy :)
• Before surgery I slept with a mouth appliance for snoring/retainer/TMJ. This appliance no longer fits my mouth with the changes, a new one is currently being made to match my new bite.

CRANIAL MUSCLE ATROPHY

• Muscle is deteriorating along my incision, near the top of my head. It feels like major concave divots and uneven structure. I am told this can be common after a surgery like this. The muscle will not heal or regenerate.
• Also common is temporal atrophy. The muscle in my left temple is deteriorating and sinking in. You may not notice until I point it out, but there is a hollowing appearance. This is caused from nerve damage or trauma to that area - which both have happened. Long term, there is a surgery designed for this, which I'm not sure I would ever pursue.

FUNNY & WEIRDNESS

• Can't feel when I hit my head.
• Although quite painful to lay on my left side, but when I do it feels like my head is floating because I cannot feel contact with the pillow.
• Food can hang out in my mouth, and I don't even know it.
• When placing my face into running shower water, I can only feel water running down my right side.
• Drool likes to sneak out of my mouth on the left without knowing it is happening.
  
  
  
  

UPCOMING APPOINTMENTS

• November: Maxillofascial specialist to discuss the jaw issues and temporal atrophy
• December: MRI to make sure the tumor hasn't shown regrowth, surgeon visits, ophthalmology & testing, audiology and testing, ENT for ear

REFLECTIONS ON WHAT I'VE LEARNED

The last five months has really been time to focus on myself; something I didn't do well in the first place. The decision to take a year off from work is providing me this personal time to heal. Making this decision wasn't easy, but I knew that adding stress would slow down recovery and increase after surgery symptoms. I did not want to be calling in sick, leaving students frustrated with their educational experience and other teachers stressed to cover classes. I am also really finding value in good rest and napping, and that most of the healing happens when I am sleeping. I find that on the bad days, sleep can be the greatest medicine or at least a band-aid for a while. It allows the body and mind to recharge, recover, leaving me feeling better. 

I have gained so much empathy for those who are experiencing anything traumatic, a health crisis, scary situations or a loss. The cards, thoughts and prayers that I have received and continue to receive are so meaningful, knowing that people continue to keep me in their thoughts (it certainly isn't expected!). Traumatic situations don't end after the experience itself, as people continue to battle pain, fear, sorrow or loss. I am so grateful that my journey continues to grow in a positive direction, time is such a beautiful healer. Every time I look back at early photos and videos it makes me cry to witness my story, and recognize how far I have come. There were days that I couldn't sit up, feed myself, talk clearly and had facial drooping. Family was there all day everyday to support me, I love them so much! 

Below are some visuals from my story.

The Iris flower is a symbol of hope. Excited to carry it with me everyday!

Vera still reflects on the scary times

5 months later :)

Stronger!

So I have climbed the hardest parts of this time of trial, now it is time to embrace what is ahead and enjoy the freedoms the surgery has provided me. Although the journey continues, I get to enjoy bits of freedom of relief and reflection. I often think back to the period of time where we had to wait for any kind of answer, and how scary and painful that was. I continue to rejoice in the fact that an operation from a really skilled doctor saved my life, and promised a future full of adventure, time and memories with my babes, friends and family, and happiness. The physical and emotional ride since surgery has been challenging, positive and rewarding all at the same time. Even with the current challenges, I must continue finding joy in so many things. Some of my challenges include facing daily numbness and vision issues, balance, additional surgery, work/insurance and any other things that may come our way. I must take it one day at a time, because “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” ~Matthew 6:34. I am alive. I function. I am moving. I am here.

THE UPDATES

NEW MRI

We spent two full days at Mayo this week, full of tests and follow ups with doctors. My neurosurgeon was very impressed with the progress. We are now just under two months out, and he was thinking it was 3 months already. "You don't even look like you had surgery", was such a compliment. The current MRI scan shows some amazing, positive change. My brain has settled back into place, and there is no more crowding! Additionally, there are no signs of the tumor. The brain is such an incredible thing, right!? It is so hard to imagine all the changes that have taken place in the last 8 weeks and continue to evolve inside my head. I will return in six months for another MRI check in, and to make sure there is no regrowth and everything is turning in a positive way. There is a chance that the tumor could try and grow back. We are told that if that were to happen (which it isn't!), it would be approached with radiation. My nerves are all in place, and we pray for continued healing and regeneration to bring back feeling for me.

VISION

My physical appearance and functionality are really great, however there continues to be challenges inside my head affecting some functions and the way I feel. I continue to nap daily if I can fit it in, which helps with the fatigue, battle pin point head aches, and see very strangely. Vision is the biggest challenge for me, and double vision is the biggest culprit. Often, people who have double vision can get prism glasses to help with the impairment. I do not qualify for this, because the second image I see of everything is offset at an angle. It is so weird. I have to wear non prescription glasses, with the left side clear taped to reduce the double vision so that I can function. If I remove the glasses, I can't walk, balance or focus - and it makes me seem as though I am influenced. These really dorky glasses will be my best friend for the next year, when we evaluate if the vision has improved at all. A year is a pretty good indication of whether or not the body will take care of healing this, and there is a 50% chance of that. If vision hasn't improved at that point, a surgery on the muscles around the eye may be a possibility. As all the nerves continue to heal, there are nerves that affect the muscles around the eye which will hopefully help me. I never realized how much our vision can impact so many daily functions from fatigue, independence with driving, dizziness, and overall cognitive function. Not being able to drive has stolen so much freedom, independence and contribution to getting my kids places. However, I received the green light to drive with a patched eye, watch out MN roads! I have been warned that it will be like learning to drive again, and I have a loss of depth perception switching to one functioning eye. I anticipate some practicing with short trips in parking lots, taking me back to age 15.

FACIAL NUMBNESS

The numbness is also very present in the left side of my face, minus the back of my left jaw. Literally draw a line down the center of my face, and I cannot feel most of the left side. This has posed challenges, especially with my left eye. I happened to scratch the crap out of my cornea one night in my sleep; this would typically be very painful, however I didn't feel a thing. We have treated that with antibiotics to prevent infection, and have been monitoring the healing. I have to use lubricating drops 4-6 times a day for the next year. The injury currently exists as a scar, which makes things more blurry in addition to the double vision. 

The numbness also affects my mouth, where I find myself drooling sometimes (gross!), and a challenge to eat. I will sometimes be eating, and not realize that there is food hanging out in the left side of my mouth waiting to choke me. When I smile, it is a weird sensation....almost like lifting up a rock on that side of my face. Speech has improved, however I still struggle a little bit with certain sounds. This also has a 50% chance of healing, or a permanent impairment that my body will adjust to. The incision has healed beautifully. Most all of the scabbing has fallen off, and now hair is just trying to regrow along that path. 

BALANCE

Balance is something I continually work on through physical therapy. There were definitely challenges prior to surgery, so the addition of brain surgery has really impacted that. With more brain training and practice, I hope to see this improve like so many other things have shown physical improvement.

COMING OUT STRONGER

Think back to the moments where we had a plan, but hadn't started the journey or the climb, and how far we all have come. The hardest part of this climb for me was the physical challenges in the last couple of months, and the best part of the climb has been experiencing the support, experiencing emotional challenges and love with and from all of you. Thank you for laying your hands on all of us throughout this time of trial. It has been a roller coaster of emotions and physical challenges, which are all a part of our journey together. Currently, I am descending from the biggest climb. I embrace the reality that there may be other ups and downs ahead and accept that any challenge comes with freedom on the descend. Last week, my mom ran into challenges with a ruptured appendix, so life will continue to throw punches. We are human after all, and unplanned hardships come with life. How we deal with hardships is a test of our resiliency and how quickly we recover from trauma. I am so grateful for my family for transporting me everywhere and taking our kids. Family, friends, faith and HOPE have gotten us through this. I am even planning a bad ass tattoo that symbolizes hope :) This is my time to heal, and put other things on the waiting list. Going through this ordeal has strengthened my inner self, physical self and even relationships. God challenges us with things to help make us stronger....I am thankful for this. 

Proud of the Crew

Physical therapy challenging balance

I can't believe it has been 3 weeks out!

I am excited to be writing my first response since I went in for surgery three weeks ago! Being alive feels so great and accomplished. There was a period of time that I didn't think I would survive this surgery with all the risks involved, and I am so very thankful for my surgeons and team that cared for me for the long surgery on the trigeminal schwannoma tumor and for my 10 day hospital stay. I cannot thank everyone (especially family) enough for all the support, care and prayers the last few weeks. We couldn't do it without the army of people who come spend their days with me, transport me to appointments, help with getting our kids off to school and activities, feed us, send encouraging cards, constantly check in with Andy and love us.There is no way anyone could go through something like this without the support of others.

Recovery seems slow for me, and I have to be patient - slow going for me is not a normal feeling. I typically enjoy independence and constant commitment to things, and this experience has put a huge pause on so many things for me. Even though recovery seems slow for me, others have been impressed with improvements. My head incisions (the full loop from my ear up around the top left of my head) are healing beautifully, as well as the skin grafting from my stomach. Here are some things that I am experiencing now:

• Yesterday I walked without a walker/someone else for the first time. It is a lot about confidence and overcoming fear.
• Attending OT & PT twice a week to seek strength and improvements.
• Showering (sitting) on my own.
• Completed a ton of medications, and now just taking seizure medication.
• Constant headaches treated with Tylenol.
• Entire left side of my head and face has no feeling - we don't know what the permanent effects will be and which will slowly improve. I have gained a little bit of feeling on the left side of my tongue.
• I am still not confident to be alone, so I require someone to stay with me during the day. This helps me feel comfortable and better about my daily functions.
• Daily couple hour naps continue to support my recovery, and I've been told they will be a constant need for quite some time.
• My balance and dizziness is a continuous challenge. As the interior of my head and brain resettle back into place, I hope for improvements in this, as this is my biggest challenge currently.
• I have been sleeping well at night, with a slight incline to prevent dizziness.
• I have double vision when I'm not covering my left eye.
• I have been switched from a patched eye to taped glasses on the left. This gives me the ability to see clearly on the right, and allow the left eye movement and light - with the hopes that it will not give up. I am to start taping my right side for about an hour each day.
• I had a terrible eye infection on the left, which looked like pink eye, but we are pretty sure it was an injury/scratching to my eye since I have no feeling. This has improved, but still has blurry vision.
• Eating is going well, I just have to eat slowly and on the right side. It is perhaps a good sign that I am feeling some pain on the left side of my jaw. I'm also slowly trying to gain weight back that has been lost.
• My memory is doing pretty well, but there are some strange things that challenge me including some names, and speaking thoughts.
• It has been 3 weeks since my surgery, and I feel like it was yesterday. I do not remember many of the days in the hospital, and time has gone so fast!

I look forward to constant improvement, even though it will require months of patience. I am so grateful to have had the medical team and knowledge that has treated me. Andy is such an amazing team mate to have alongside me and take care of us, and the girls are incredibly strong for what they also have had to experience. Life is a whole new perspective, and am so thankful for this life and the ability to continue living it. 

Settling in at home

Rachel made it home on Saturday evening!  She was welcomed home to a chalked driveway, balloons, and posters.  She continues to mostly rest, with occasional laps around the kitchen.  She has pretty low energy and continues to experience dizziness, so lots of rest to help her heal.  Andy got her outpatient PT & OT scheduled and she will start that later this week.  The current plan is to go 1-2 times/week.   Thanks for your continued support and cheering her on alongside us!   

She's Heading Home!

After 8 days at Mayo Clinic, Rachel is headed home this evening!  Part of being discharged was Rachel being able to do 10 steps up and 10 steps down the stairs independently- she passed with flying colors!  She looks forward to continuing her healing process in the comfort of her own home.  At this time, it's best for Rachel to rest her brain, so no visitors just yet.  We will let you know when she's ready for some visitors.  Thank you!  

A new day!

Rachel turned a corner on the pain she was experiencing!  She was able to get a shower, into some cozy clothes, and up for some more walks by yesterday afternoon.  The pain and fatigue are definitely still there, as expected, but she has been able to resume some of her activity.  She even walked the whole loop of her floor this morning with assistance.   Rachel has been eating her meals independently, too!  Some super big victories on her road to healing (and hopefully home soon!)  Thank you all for loving my sister and her family so very well.  She has such an incredible village.   💓

Difficult Day

Hello!  Wednesday was a challenging day for Rach.  By midday, she was experiencing a significant amount of pain.  They tried some different pain meds again to help control the pain.  Due to pain, she wasn't able to do very much.  She pushed through the pain and was doing a little better by Wednesday evening.  We know there will be good days and bad days in her healing journey.  It's all a part of the process.  Pray that she would have minimal pain today.  Thank you!  💗

Wednesday Update!

Good Morning!  

Rachel is doing well.  She continues to increase her food intake.  This will help her regain strength.  She had some oatmeal, eggs, fruit and yogurt for breakfast.  She even fed herself the eggs and fruit!  Rachel has increased her time sitting in the chair and has also walked longer stretches.  We celebrate all her victories- big and small!  Go, Rach, Go!  

Tuesday

Rachel is doing well, all things considered.  They changed her pain meds and it has helped with her drowsiness.  The new meds have also been softer on her tummy.  Rachel is communicating really well.  She got up to use the bathroom this morning and then spent some time sitting up in a chair for a bit.   The goals today are for her to sit up in the chair 3x, go for a little walk 2x, and increase her food intake.  (She gives the hospital french toast 1 star. 😉)  Rachel will work with PT and OT again later today.  If you're able, go ahead and leave a comment on this for Rachel.  We plan to read some of your encouraging notes to her later today.  Thank you!   

Monday Morning

Rachel had a decent night of sleep last night.  She continues to experience significant pain, but they are managing it better today.  They are going to try a different pain medication today that shouldn't make her quite as drowsy or nauseous.  The goals today are to get her to sit up more frequently and eat some soft foods.  She had a visit from PT this morning and did really well with the walker.  She will get a visit from OT later today.  The neurosurgeon made rounds this morning and her MRI looked good!  Rachel got her headwrap removed, so hopefully that will help relieve some of the pressure in her head.  Her incision looks really good.  She had some wonderful visitors this weekend.  Rachel is so strong and we celebrate her strength and forward progress!

Sunday morning update

Rachel had a rougher night.  As the anesthesia has worn off, she has become more aware of the pain.  She is complaining of significant headache, neck pain, back pain, nausea- all to be expected after the surgery.  It’s all a part of the process, but painful to watch her endure nonetheless.  She will get an MRI later this morning.   The nurse tried to sit her up for a couple minutes this morning.  They will try sitting her up again later today.   She had some jello and applesauce this morning and was able to get up to use the restroom.  

A Quiet Day

Good evening!  

It has been a good, sweet, quiet and calm day.  We have been taking turns visiting Rachel.  She was moved out of the ICU mid-afternoon and onto a regular floor.  Such great progress!  Rachel has been resting for most of the day.  She continues to respond to questions when asked.  The girls got an "I love you" from their mama.  💓  Grateful, grateful, grateful.  

On the other side!

Good morning!  She did it!  Thank you to Rachel’s army for all the care- encouraging words, prayers and love shown to her and her family.  It was a big, long day.  We are so thankful to be on the other side.  The surgery itself ended up lasting 12.5 hours.  The tumor was a hard tumor (not soft) and the removal process was more extensive because of that.  The tumor was wrapped around (above and below) the nerve.   They performed a CT scan post-surgery and she was able to be extubated last night.  Andy & Mom both got to see her late last night.  This morning, our family is taking turns getting to see her, including her sweet girls.  Rachel was very responsive this morning- moving body parts when asked, answering questions, etc.  They even asked if she could smile, and she gave a smile.  We are so proud of Rach!  She has been and continues to be so brave and strong.    

Surgery coming to a close

We just got word from the neurosurgeon that his portion is done.  They are closing her up right now and then she will go for a CT scan to check how everything looks.  The surgeon was very positive and he will do rounds at 7:30 a.m. tomorrow.  More info to come in the morning!  

Continues to do well!

Hello!  Rachel still continues to do well in surgery.  We have been getting updates every 2 hours.  With all of the prep work, drain placement, etc., the procedure didn't begin until 9:30 a.m.  Different surgeons and medical professionals are working together to do their portion of the surgery.  The last 2 updates have been that the neurosurgeon is continuing his portion of the job and Rachel continues to do well.  Andy and Mom will meet with the medical team when the procedure is done.  We will certainly keep you updated!  Thank you for your care and concern for Rach!  She is so loved and has a wonderful army behind her.  

Update!

We have gotten some updates from Rachel's medical team.  Rachel continues to do well!

Surgery Day!

Rachel had a good night of sleep.  We sent her off with many hugs and prayers at 5:30 a.m.  Surgery began at 7:45 a.m.  Her strength of character is unmatched.  In true Rachel fashion, she was encouraging others this morning.  We are looking forward to being on the other side of this and prayerful for a full recovery.  Thank you for the many ways you are carrying us through!  We will update more later today.  

Starting my climb tomorrow...

It's time, let's do this! This moment has been building for a month, and I GET to do this. Today, Andy and I headed to Mayo early in the morning for further testing and scans. My family will be bringing the girls down to Rochester in the afternoon and we will all staying in a hotel near St. Mary's. We will spend the evening with them doing one of their favorite things, staying in a hotel and swimming in the pool. I will be soaking up as much time with all of them before surgery tomorrow. It is difficult to know what to think and feel going into such a serious operation.  I do have so much hope that my outcome will be positive! But... there are times when I feel hope wavering. The natural human reaction is to always prepare for the worse. I have had a tough week with lots of worries and emotions; it is a strange thing... preparation for this journey. I just can't help but think negative thoughts sometimes. I hug people as though I won't hug them again, and go through all the motions as I grasp this reality. 

TIME OF REFLECTION

It has been a time of reflection, providing me with a renewed perspective. I have always found peace in the rise and set of the sun and what each new day brings, sounds of the birds, sway of the trees and the breeze on my face. I am especially soaking in all these sights, sounds and feelings now. I'm gaining strength in notes from family/friends, and acts of kindness from people (Iyla's swim season paid for, thank you!). It is the joy, laughter and simplicity in small things that make this life good. It is the gift of life itself that is most meaningful, not the things that come with it. Never would I press my own faith on someone else, as everyone has their own right to faith. However, God is present in mine. Present through the birth of my children, when provided the power to save my moms life, gifting me people and meaningful places I enjoy visiting. Life. I have felt the presence in the last month, through all of your prayers.

Last night we were gifted with these family photos, which we cherish. The magical moments and spirit of our family were captured in such a beautiful way (Shea Jurgensen). She has shared her beautiful gift with us, and given us a gift we can look back to during this time of trial. My babies, so much love. My mom also just gifted me the rings from my heavily grandmother's, they are going to be a part of my angel tribe. I feel their presence too.

HOPE

If you are reading this blog, you have made an impact on my life.  For you, I will push myself in ways I never knew how, and I will discover strength I didn't know I had. For now, we/I have hope and pray for the outcome, for a speedy recovery, for no risks to impact my life, for the gift of doctors who will save my life, for more strength and balance than I have now, to have the life I know back - every bit of it  We aren't promised tomorrow, but I have been promised another chance - and that I am so grateful for. When you are given another chance at life, it creates a whole new perspective!  I keep telling myself that my hope and faith is so much stronger than my fear! "We have this hope as an anchor for the soul. Firm and secure. ~Hebrews 6:19." Couldn't have said it better.

I will be in the ICU for 1-2 days, and Andy will stay in Rochester (at the hotel). I will have a hospital stay less than a week.

Family will be in and out throughout the week. I can't wait to see the faces of my smiling girls! I am so lucky to have Andy as my parter in life, and to take this journey together. The blog will be updated by family, to keep you posted on progress.  

All my love. Rachel