2 Year Post

 2 years post surgery day! There is just so much to celebrate and be thankful for! I think back even a year ago, and think about how much better I am today than I was then. Time has such healing power, and it just takes a whole lot of patience to dance that journey. 

I have a few updates from the last time I spent some time with my beloved Mayo in December. Going into the appointments always feels heavy, because I just don't know what may be on the other side, but I was blessed with clear scans and happy tears. My neurosurgeon let me know that he was doing another giant trigeminal schwanomma the day after my appointment, where they will be trying a new technique based on the things they learned from my case. He was also impressed that I speak as well as I do as he identified the area of the brain they had to navigate; all reassuring. Updates and steadiness include:

• My vision has improved so much! I ditched the patch last July. I still have some double vision at certain angles, but so much improvement!

• I will likely stay completely numb on the left side of my face, which means I will not get any nerve functions back either. This is called trigeminal neuralgia. 

• With trigeminal neuralgia, this brings the chronic burning and pressure. Meds help manage this and the electrical shocks. 

• The shocks have become very minimal if I take the meds on time and avoid triggers (alcohol, caffeine, dehydration). I will be revisiting Mayo for nerve function changes.

• Since I don't make tears in my left eye, I will continue to wear the sclera lens to protect and provide moisture to my cornea.

• My left jaw muscle and temporal muscles have completely atrophied, creating alignment issues. I am wearing a dental appliance at night to support this.

• I feel strong, well balanced and happy! I know I will have mostly great days, and still some "bad head days".

Overcoming big scary events in our lives can be so rewarding, and at the same time emotional. As I reflect back on the day I went in, I had so much hope in my surgeons and team. I had hope that I would come out as "me". I had hope that I could go back to life as I knew it. At the same time I was scared that I wouldn't make it, scared I wouldn't see everyone I love again, scared I would look different, scared I would need to be cared for the rest of my life (all of which I knew were risks). However all the positives and learnings from this journey have taught me so much about the importance of hope, myself and understanding others who are traveling a path of challenge. I know that anniversaries following a traumatic experience can carry happiness and relief, yet at the same time trigger sadness and fear all over again. Just know that whatever your challenge may be, I have hope for you, always.

Teachings of a Tumor

April 23rd marked one year, with rainbows! It is so crazy to think about how much time has passed, yet at the same time it seems like yesterday. This mark in time is for reflection of what I have learned in the past year from something that was so present and destructive, yet finding silver linings. We can actually gain strength and wisdom from our challenges. It reminds me that the past is our teacher and the journey is there because we are supposed to learn from it, no matter what the path may be. So many friends and family came forward over the past year in a variety of ways, and my gratitude is infinite. You may have stopped by for hugs, offered food, said prayers, emitted good vibes, sent cards, thrown a party and offered continued words of strength. Everything you offered was timely and just what I needed. I infinitely thank each and every one of you for your genuine love, as it has taught me to provide this to others. Some amazing humans threw a surprise party to recognize this milestone, and it couldn't have been more perfect emotionally and downright fun. This is a photo captured over our house from the party on the exact one year date; it was so perfect💗. 

The kids were busy running around, so here we are "somewhere over the rainbow"

To celebrate this milestone, I thought I'd share my list of learnings and reflection from the last year:

TEACHINGS OF A TUMOR 

• What it means to really be loved, and accept/rely on others when we are weak
• We can be each others greatest gift, and know that we all have some bad ass in us that needs to be shared
• Connect with others who share similar experiences. Sharing allows us to connect and understand others and what they may be carrying
• Adversity handling is different for everyone
• Sometimes it is okay to just share tears without words
• What we see on the outside is not always a reflection of what is happening on the inside
• Slow down, because it feels better
• Pay attention to the things that make us happy, and do them
• It's okay to be not okay
• There is a talented doctor for every weird thing
• I am strong. We never know how strong we are until it is the only option
• It has taught me the definition of fear
• Things can always get worse, but it also can always get better
• Each day is a beautiful magical gift. Every single day is better than no day.

This experience will always be a part of me. Although I do not want to relive it again, the perspective has taught me important life lessons that I can continue to carry through life. I will always have those memories of hearing the news, the sadness and uncontrollable tears, the conversations and all the moments and emotions throughout the recovery journey. The present nerve pain, physical scars, bumpy head, loss of facial and jaw muscles, loss of fascial sensation, hearing loss, double vision/loss are all reminders of worse things that I conquered. I'm still ahead, and there is so much to celebrate in my recovery as I look back on how far I have come since the moments after surgery; everything from finding words, cognitive improvements, physical balance! and healing inside and out.

UPDATES & SILVER LININGS

The medical care continues in various ways, including clusters of appointments for various things. I have seen nerve specialists and surgeons, maxilliofascial surgeons, more specialized ophthalmology and lots of different test. As recommended by my surgeon, I will also be seeing genomics and participating in some studies. This is not only for possible answers and peace of mind, but if it weren't for research and others before me I would not have received the care that I did. 

LOOKING BACK

Looking back, there were probably more red flags with my ataxia than I realize. On top of the balance and vertigo/drunken feeling, I did have trouble with swallowing reflexes, which was recently brought to my attention from a fellow airplane passenger who works in neurology. A friend also reminded me that going on walks meant that my left leg would drag a bit, and be super annoying.  It never crossed my mind that there was something much bigger happening. It is a good reminder to listen to your body when it is telling you something. Overall, I have made so much improvement, especially with my gross motor, balance and overall strength - even since my last check up in December. I really didn't realize how much I was still "off",  until I started to feel more "on" again. Looking back, I can't believe I was considering a return to work last fall....just too many things to still deal with throughout the year. SILVER LINING - I caught it before something more catastrophic happened.

MUSCLE ATROPHY

We have three branches of nerves on both sides of our face. I have trigeminal neuralgia (paralysis) for the top three sensory branches on the left side. Since the tumor grew on the trigeminal nerve, there is damage from surgery affecting those nerve branches that continues to create challenges. The consequences to my nerve damage include no nerve function and complete loss of any sensation on the left side of my face (eye, ear, mouth/tongue and rest of face), and function of certain muscles. I have muscle atrophy in my left temple and upper jaw, which has created no use of my left massater (jaw muscle). This has created challenges with mandible jaw alignment & chewing, and a little malformation. Our family orthodontist has hooked me up with a mouth appliance and rubber bands to retrain my right side to work differently; I am so grateful for Veil and Wild Orthodontics! I’m not sure if or when I will ever get used to not feeling my face and the constant feeling of burn/pressure, but again this could be worse. SILVER LINING - I still have use of motor functions in my face. You will still see me smiling, and pretty normal looking on the outside:)

MY EYE

My vision has drastically improved since day one, which is promising! The downfall of trigeminal nerve damage is that nerves also control eye muscles (also not working correctly) creating continued vision issues. My best vision is the top left corner of line of sight, however I still have double peripheral vision which I have pretty much adapted to. I still occasionally wear the clear patch glasses to ease my neck from looking down too much, which can cause neck issues and headache. Since I cannot feel my eye, and there are no nerves in the eye communicating with my brain to keep the eye/cornea moist, I suffer from a dry chapped eye simply from blinking.  The good news is that I have just been fitted with a sclera lens! It is a large (contact like) lens that will extend into the whites of my eyes, and hold added liquid between the lens and my eye. This will keep my eye moist, protected and offer a prescription for better eye sight to keep everything healthy. It will help to preserve this eye, and prevent possible blindness over time. Getting the little sucker in is challenging for me since I cannot feel anything - and I insert it with a mini plunger face down. SILVER LINING - although it takes time to discover support sometimes, there is help for everything. I am very excited about this! 

NERVES

Nerve pain is still a thing, which feels like I am briefly being electrocuted inside my head. Timely medication management and avoiding trigeminal neuralgia triggers like alcohol and caffeine seem to decrease intensity. There are still some bad pain days sprinkled in, but overall drastically less. I have also been told with nerve regeneration, pain can also get worse before it gets better.  I am still very hopeful that I will gain nerve sensation over time, but at the same time accept that this is how it could be forever. I am told that if this improves, it will not recover muscle atrophy, however it could bring back sensation. We will continue to test and monitoring nerve function with EMG testing, and examine a possible nerve surgery where they graft healthy nerves to bad nerves to regenerate, which is mainly being discussed for the health of my eye. SILVER LINING - even with sensory loss, I can still smile :)

WORK

It is exciting to return to work in the fall when school starts. I will be in an even better place because of all the care and solutions I received this year.  I look forward to working with students again, and see my colleagues more often. SILVER LINING - I was able to take a year of leave, which has been a complete blessing for all levels of healing.

GRATITUDE

This whole experience has been like the roller coaster ride I explained at the very beginning of the journey. There have been so many ups and downs, yet there are other amazing humans on the ride with me. There are times to celebrate and times to problem solve. I've learned to embrace change, adapt and just stay hopeful. Hope that today presents me with patience and welcomes change. Hope that tomorrow is the day for new gifts and continued recovery. In this phase of recovery, the unknown of the cause continues to hover over me. I hope that there there is a discovery of what causes these tumors so we can prevent them.  Today, and everyday is a beautiful gift!

Great News - 9 Months Out!

Late April seems like yesterday. Nine months ago we were sitting in a surgery prep room waiting for surgery. I still get emotional about how surreal and scared we were about not knowing what the outcome would be, yet at the same time holding onto hope. It is a strange combination of feelings, but those feelings have provided so much strength. Today, I am no longer a brain tumor patient, and I'm excited to share some positive updates!

December held a couple of Mayo days that included several tests and appointments. The ultimate appointment was with my neurosurgeon, where we went over progress and shared some celebrations. My brain lobes have 100% reshaped and moved back to where they are supposed to be. In addition my brain stem shifted back into place as well, something they weren't sure would happen. This has everything to do with reasons for my body to be feeling more confident. AND... no tumor regrowth! I look back to even 3 months ago, realize how much I still was just not feeling 100% overall. We left that day with smiles and an overwhelming feeling of happiness and relief. We will return in 7 months for more follow up. Here are the brain scans before surgery vs. 8 months out:

Before surgery: The white area (not eyes) is the tumor, squishing those lobes at the back of the skull

8 months Post Op: The body is so incredible, look how they have reshaped themselves!

My continued challenges remain fairly unchanged. Full fascial numbness on the left side (eye, nose, mouth, internal ear and face), some hearing loss, jaw misalignment, muscle atrophy in temple and under cheek bone, ear drainage due to jaw issues, double vision, no use of left mandible (jaw muscle). After an appointment with a Maxilliofascial surgeon, I now have some answers to the issues. Two of the main nerves that supply a motor to my fascial muscles on the left are paralyzed because of nerve damage from the surgery. As a result, it has created all the things. This explains why chewing gets tiring and my jaw shifts to the left so my bite doesn't align. An invasive surgery is not something I will be pursuing for this one. I have had a couple of eye injuries because I cannot feel it, so I need to continue using drops and just be careful. I was told that vision would improve the most between 4-6 months, and it did! I still have some blurriness, and double vision with all my peripherals. My best vision is in the top left, so I often find myself tilting my head to see clearly without double images. I continue to wear my image blocking glasses periodically to give my other eye rest and straighten up my neck, and I continue to patch while driving. Nerve pain continues to assault, however we are still adjusting medication that has been helping. There really is nothing to compare chronic nerve pain to...it's not a head ache or like a body ache. They are sharp, and often intense, but are quick to release. There are more great days, and a handful of not so great days with nerve issues. Andy will always say "you over did it today", which can also be true. Full recovery could be up to 2 years, and I've come to accept the possibility that it may remain my new normal, and I continue to pray for nerve regrowth. My surgeon said more than once "I'm so glad you are alive". That got emotional, and reminds me that all these things are minimal compared to alternatives.

Recently, I connected with someone who was also diagnosed with a brain tumor. Although our tumors themselves are very different, the ability to connect with someone who has a shared experience is unexplainable. The depth of emotional and physical understanding of one another was unmatched, and our families felt connected. No matter what you are experiencing, whether physically or emotionally, I cannot say enough how important this kind of connection can benefit healing.

Today, I am overall feeling well. I am enjoying life like I was prior to symptoms and diagnosis. While I may live with physical reminders and annoyances of my experience for the rest of my life, I have learned to enjoy every moment. Life is so fragile and precious, and I am so grateful to be here.  I have been determined to use my experiences and this continued recovery journey as a source of strength to thrive, emotionally feel better and slow life down. The improvement of physical strength and balance has also provided so much more confidence in the small daily functions that I had previously taken for granted. Recovering from a major brain/skull surgery has not been easy all the time, but the celebrations along the way have been very rewarding and prideful. Sharing my journey has allowed me to reflect, cope and locate hope and strength. Over the course of this journey, I have been touched by so many people who have quietly stepped in to support myself and our family. It always seems to be appropriate, unobtrusive, timely and my gratefulness for this is infinite. At first it was hard to fully accept the variety of support, but acceptance of this statement "I've got this, you've got us" took over, filled my heart and raised us up with HOPE.

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!