We cry and we laugh

I once heard that the best way to combat grief or trauma is to talk about it, cry and laugh. That is exactly what we are doing. The first few days were hard to process, but the more I talked about it, the easier it was to talk about. We spent all day Thursday at Mayo, and the news we received was like starting all over again with those emotions from the last week. This is the roller coaster of emotions that will become a part of our journey. Sometimes we have to sit idle, sometimes we fight and climb, sometimes we enjoy the freedom from the journey itself. Yes, there are so many things to be afraid of, but I will be confronting this fear to overcome. For the first time in my life, I'm finding words to be therapeutic, and hopefully the need-to-know information is helpful for you. Laughing, crying, writing is what I will continue to do. 

THE TUMOR

Going into it, I had so many questions: what is it exactly...what's the treatment...what's the recovery, what are the options, pros/cons, will I live? We brought Andy's sister, Ambria (ER nurse) to our appointments. I'm so glad she was there to fully hear all the things, take notes and help identify questions. Andy and I were in such shock and couldn't stop staring at the screen. It was a LOT to take in.

Every nerve in your body is protected by a layer of tissue called a sheath. A schwannoma is a tumor that grows in the sheaths of nerves in your nervous system. There are a couple different types of schwanomma tumors. I have a trigeminal schwanomma tumor (less common than a vestibular schwanomma), on the fifth nerve. The tumor is indeed benign!, large in size (5 cm x 3.1 cm), shaped like a dumbbell, is located on my left side at ear height and deep enough to  be pressing on my brain stem & cerebellum (reason for change in my gross motor). Although I have some strange effects, considering the size of my tumor, the doctors were surprised that I don't have more symptoms. My body has done a great job of compensating and my age might have something to do with it. It is most commonly seen in patients 55+. The tumor is too big to do radiation, so here are my options for treatment:

1) Leave it alone and allow this thing to slowly rob me of my fine and gross motor skills, and eventually steal my life. Due to its size, it is growing more quickly.

OR

2) Have an operation to remove it so that is doesn't rob me of those things.

Although the operation comes with risk, #2 is the obvious option. We must rejoice in the fact it is actually operable. The fact that it is operable, means that we aren't going to let it be option #1. I'm not even going to go over the risks, just know that I am in the best hands. We could sense the confidence the medical team has, and the rare skills they have. This is an operation that might be done 5 times a year at Mayo, because my condition is so rare. There is less than a handful of doctors in the nation that have the skills required, and I am lucky enough to land in their lap. I will be their "big case", lucky me! We were thoroughly impressed with Mayo, their systems, processes and size. We are indeed in the right place. I asked a nurse "is this my guy?", and she undoubtedly said "this is your guy". 

THE PROCEDURE AND RECOVERY

To simply explain it, they will access the tumor from the side of my head by a large hook shape incision. A complex system of nerves will be navigated to access and remove it. An ENT specialist and a neurosurgeon will be working with a team of about 8 people for the full day long procedure (8-12 hours +). I will have some permanent plates and screws to remind me of my journey. Of course Andy cracked a cousin Eddie joke. When Andy is around, what's any conversation without movie lines? Those who aren't familiar with Christmas vacation here's the clip. Andy and my Dad (singing - "my my my schwanomma") will for sure keep me laughing, and that's my therapy too.

I will have my surgery on April 23, at St.Mary's hospital in Rochester. We will be at mayo for preparations a day before. For the recovery, the first couple of weeks will be the hardest climb, but the forecast of a full recovery will be 3 months to a year. I will spend 3-4 days in the hospital. Although I'm scared of all the things (risk, outcome, pain, life changes), I have full confidence in the medical team, and we are fully aware that the alternative is not better. Limited visitors are allowed at the hospital, but we may be able to have them once we are home. In the next month, I will be working hard to get strong and pack on the pounds. Ambria said I do not want to go into this surgery lean - I need reserves. I have currently experienced weight loss without trying, but I will become more aware of my eating.

IDLING

Sitting idle is not something I do well, and idling the last week has been painstakingly nerve wrecking. I have always liked working and I find the idling, with no work or school, very strange. At age 14, my first job was picking golf balls on a golf range (yes everyone aimed to hit the moving cart), and I haven't stopped working since. I've carried a back pack (student or teacher), since the age of five. Now that we are halted, it feels really weird to give up my backpack as we focus on my health. I have enjoyed the stillness and slower pace of my mornings and time with my girls. On one hand, sitting idle creates anxiety, but on the other it is allowing me to find joy in each moment.  We have a plan now, it is a way forward. Now, we idle until my surgery. The girls are most afraid of not being with us, but our village will be here for them.

THE RIDE

Like a roller coaster car sits idle waiting to load everyone, similarly, I have people pouring into my life - loading the cart. We are all waiting for the ride. Then the cart starts to proceed forward, with all of us together. Look ahead, it will be tough. Yes, climbing that hill will take a lot of energy, but just think of how awesome it is going to feel going down. Just as the freedom of the descend is enjoyed, we have to climb again. There are going to be ups and downs for sure (like I've experienced the first week).  Because we are human, we initially go straight to the negative thoughts, but positivity prevails and knocks those thoughts right off the track. Right now, we are sitting towards the bottom of the hill, but we are slowly proceeding, we have a way forward.

PERSPECTIVE

We haven't experienced loss. I'm alive. Nothing compares to the tragedy in Colorado this week and the pain those families are experiencing. It could all be worse, and I'm glad it is me and not my children. All we can do its hope BIG, pray HARD and have courage. Send all your positive vibes, and warriors to take care of my family!

YOUR GENEROSITY

The flowers that have come to my door step are phenomenal. I am overwhelmed with the sunshine they provide. At this time, nothing would make me more happy than to give. So, in lieu of flowers, please consider making a donation to the SHAKOPEE SCHOOLS ANGEL FUND, where the money will be put to great use. Moving forward, I am not a keeper of things, and with the move, things will will accumulate and create some anxiety. Your acts of kindness and service are what fill my heart most of all.

People have shown up BIG, and we feel so loved. People are ready to answer the call, and it is so damn humbling. Friends, family, neighbors, colleagues and students (it is really quite amazing the care you would see from high school students - these are good humans with promising futures!) have provided us the support we need.

Andy keeps asking when we are going to wake up from this bad dream. Although we are in touch with reality, it still doesn't feel real. God made our bodies to heal, and that's what will happen. It isn't going to be easy, but we will all find comfort knowing this isn't in our hands. Whether it is laughing, crying or talking about this thing, we will accept the emotional (and physical) ride. It is going to be quite a life changing one, that's a sure thing. 

I've got this, you have us.

The Gonda Building

Aerial view from the top of my head. The white blob is the tumor.

WE CRY

and after we cry, WE LAUGH again.

Mayo bound!

After a whole lot of rigamarole on the the phone today, I have appointments at Mayo on Thursday. I am so happy we will soon have some answers from really smart, specialized people. I  have heard so many success stories coming out of Mayo, and have so much confidence that I am in the right hands. We are so lucky to have this resource in MN!

We wait

GRATITUDE 

As I sit here at 4 in the morning, I am flooded with thoughts. Thoughts about the future, thoughts about what to share, how to share and all the scary unknowns. Thank you for the hundreds of messages, facebook posts, emails, calls, texts. I can't imagine what it would be like to go through something like this without technology! Thank you for taking care of us, the compassion, the food. THE FOOD! It really is that one thing that is easy to take off my plate right now. Although I am asking myself a lot of questions right now, I don't have to ask "what's for dinner?" 

I am overwhelmed with gratitude from all of you. This village we have is amazing. I really do have amazing people in my life. To field the many questions, and put it into one place, I will be updating my blog with what we know. Moving forward, it is my hope that you have more answers, and it will reduce the amount of "filling in". I know the questions come from a compassionate and caring place, I really do. I'm exhausted.

LOOKING BACK

Here is how it all started. Looking back, there have been some things that may have been flags, or maybe just old age :) I am the ripe old age of 41, and I am told things change when you hit your 40's. For a while that is what I chalked it up to be. Then I started getting more concerned. We laugh that we have some answers now, which explains: why I hate group fitness (I'm so self conscious of my lack of coordination!), why I can't hold tree pose for the life of me (don't ask me to close me eyes!), why I am so well known to always leave something behind, why I often run into a door frame or mis step, why water skiing and downhill skiing has become so challenging, why I feel like I have water in my head, and a constant feeling of vertigo, why my motion sickness has gotten SO bad (Hawaii helicopter ride put me out for and entire day, why I felt so sick in Disney for Iyla's 10 year trip), why I nearly pass out when my head is upside down (this landed me in the ER last year), why I have random muscle twitching, why a single alcoholic drink makes me feel completed plastered, why I am asking "why do others make paddle boarding look so easy, I have to work super hard to stay on mine". Last summer I was paddle boarding with friends, and we laughed so hard because I kept falling in - I know they have some amazing visions of it they can still laugh at! I am not in pain and can function normally. You would never know I had these things going on - I just have to work hard to maintain balance and reduce my feelings of dizziness. These are all good reminders that what one body can do, another body can't. 

HOW IT TRANSPIRED

I have been treated for vertigo, going to physical therapy. They tried all the maneuvers on me, it wasn't working. There were some exercises I was supposed to do at home. Sometimes I did them, sometimes I didn't. Sometimes it was laziness, and sometimes forgetfulness. I did know I wasn't seeing results. When I called to make an appointment with my doctor, she was gone and  booked until April 9th - I couldn't wait that long and felt more urgency. So I took the first available opening with a stranger. I went in, demanded an MRI, and landed myself in the machine a week later. I received the devastating call on Wednesday of this week (a week later) while I was teaching my CAPS class in person and off site. The clinic called, and I ignored it like I do when I'm teaching. They called again... so I decided to take the call. When I heard the words "you have a mass on your brain", I thought, "wait, what? let me site down." Probably much like you felt when you heard the news. I sat down, and one of my students was coming back from the bathroom. As we made eye contact, I could see in her eyes that she sensed something was wrong. There is nothing in the world that prepares you for news like this. There is no guidebook or manual to navigate this world. I couldn't hold it together, and sent my students home. After some very difficult phone calls (the hardest being Andy, and my family), I began to process all the feels. 

The next day, we met virtually with a neurosurgeon. Unfortunately he did not have the images to look at, only the report. From what he could gather, this is what we know - and only what we know. It doesn't look to be malignant (thank God!), it is growing in the lower left of my head, it is VERY slow growing (likely for years), it is possibly a schwanomma tumor (don't google it, seriously), it is starting to press on my brain stem (which is why I feel so weird) and it requires a very specialized surgeon who handles skull tumors. He kept referring to it as a skull tumor, which means absolutely nothing to me, I have a tumor in my head.  He wouldn't touch it - which is nice to know that he was honest, but also makes it more scary. We have been referred to a team of doctors at Mayo and we still have heard nothing from them about scheduling our first appointment. I will call on Monday, and I'm realizing that the medical system is messy (as we learned when we went through our Mom's ordeal a couple of years ago), and I have to be my own best advocate. Again, he was only reading the report. Without images, none of this is confirmed.

I have taken a leave of absence for the remainder of the school year. This alleviates a TON of stress. As you know, teaching comes with high demand, especially this year. I have a hard time finding time to do it all well and focus on my family. It is the first Sunday I will not be working in a long time. This was the right decision, as I cannot predict what my future holds. Insurance is a scary thing, mine will end in August if I don't go back to my job. We will cross that bridge when we get there. For now, I am well taken care of.

ALL THE FEELS

We are really f**** scared. I don't know how else to explain how I feel... we all feel. I have spent three days feeling extremely emotional. Of course, every time I talk to someone new it triggers a flurry of emotions. While in public, I find myself thinking "these people have no idea that something is growing in my head". Not that they need to know, it just creates a different perspective.  We have no idea what people are going though as life around us continues,  regardless of what we are facing. Because my life currently has pause, it feels weird to see everyone going about their business. I feel like it isn't just a bump in this life road, it is a hill that I have to climb. Right now, I am sitting at the bottom, feeling like I don't know where to go or how to get to the top. Five days out now, I'm starting to feel more angry. I am going to kick this tumors ass.

This is why we need your support and prayers. You are what will keep us climbing and shining, and keep our focus on the top of the hill. That hill that I think will be really f**** (can you sense my anger yet?) hard to climb. I am looking forward to the descend, when I can look back and say that I am stronger because I climbed that hill. 

The girls are doing well. Obviously, it has been hard news for them to process and their emotions continue to come out in strange ways. From the start, Vera has been our little cheerleader. Both girls have become even more affectionate than they were before. I love the nightly snuggles, check ins, hugs and hand holding. It makes me feel safe. They are strong little girls who will become strong women because of their resiliency. I love them so damn much, they are the reason I will overcome this thing.

HOW CAN I HELP?

A question we hear multiple times a day. A true testament of how lucky we are to have an army or warriors ready to pray and lend a hand. This isn't in our hands, but your support will keep our eyes on hope. Right now, I don't know what we need or what we will need in the future. We simply need more answers to really know. I do know that your kindness and acts of service are what keeps me thinking positively (acts of service = my love language). Of course Andy's love language is physical touch :) Those who know Andy, he will NEVER ask for help. He will do everything on his own and always put others before himself. I guess you will just need to recognize what he needs and act, don't ask. If you ask, you will be met with "I'm good". Andy is and will continue to be my rock.

THE MOVE

We recently signed papers to close on a house in June. My situation could really complicate this, but I have demanded "we are going to do this no matter what". We are trading our backyard view of other houses for a view of wetlands just outside of Shakopee. As we wake up and open the blinds each day, Andy and I have always joked that we are looking at the waves crashing on the beach. We are still going to do this, NO MATTER WHAT. Leaving our neighborhood family and a home that holds so many memories has made this decision very hard. These neighbors will always be our family no matter where are. I know we will need lots of help with this move - packing, unpacking and logistics. I had a friend offer to be our moving manager, and yes, that is what we will need!

This is going to be quite a journey. For now, we are still. We wait.