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.