Wednesday, October 26, 2016

Can I have a meltdown please?

Tomorrow is officially the day of my surgery.

It is currently 12:30 AM Wednesday October 26, 2016.  I will be having life altering surgery and by this time tomorrow will be in some sort of over drugged, possibly painful aftermath of a long surgery to ultimately take away the hearing in my left ear, cause dizziness, possible facial paralysis, and headaches.  WTF am I doing again???  I don't mean to sound like I am regretting my decision or that I even found out about this tumor but HOW ON EARTH do people not freak out a little about this?

I swear I have gone through the stages of grief over the past month and let me tell you, I am very ready to be off this rollercoaster ride but a little weary of how I am going to feel once it is done.

This post may be a little all over the place but honestly that is somewhat how I am feeling right now.
I keep calling this situation my journey and have addressed it head on.  I feel informed, comfortable and ready.  I also feel scared, misunderstood and sad.  I think I am prepared - I have my kids taken care of, my house is clean an scrubbed from top to bottom I am almost packed for the hospital and feel as though I enjoyed my time before being tied up with the whole healing process for the next month or so.  I also have felt love, disappointment and encouragement since getting diagnosed.

If you know the T.V. show FRIENDS you might remember the episode titled "The One with the Memorial Service" well it is kinda how I felt a couple of times.  Now, not this week but the weeks prior.

Time out - cry break....

I wanted the last couple of weeks to be awesome and fun and entertaining and memorable...I know some people may not understand what I am going through but I do know there are people who know exactly what I am going through which gives me some comfort in not having to explain my feelings or why I felt so alone during the last couple of weeks.  I had some wonderful moments especially this week but I had some really crappy days where I wished and prayed someone would knock on my door for an impromptu visit to just say hi and see how I was doing.  I had plans I had to break because I didn't feel good, I canceled plans because I thought I didn't feel good but really I was just depressed and wasn't feeling up to doing anything.  I understand I am not a priority to everyone but I really needed the extra credit love this month and unfortunately I just didn't feel it (yes I am depressed and yes I realize that is why, but I just need to say it so that I can release the negative)  as much as I guess I was hoping.  I had some really valuable moments and just the thought of those moments brings joyful tears to my eyes because they were not over the top moments but rather quality moments, sipping hot cider and chatting for a few hours, laughing so hard I swore my head would pop off playing games, sitting at a fire in the mountains, drives in the mountains, meals with friends, getting gifts in the mail and a few extra moments in between.  I don't always want people to know how I feel because I HATE to be judged and think that is bound to happen, I don't want to be looked at as selfish I just want to be recognized as someone who is hurting.  I don't want to be looked at as unappreciative, I just want people to know I struggle with worth.

I just want this to all be over with so that I can go back to being my normal self, the self that wakes up goes to work comes home coaches soccer and loves my family.

I cried one time though all of this only once before this post - I cried because I felt guilty for leaving work and causing stress on a person I really like and look at as friend and because I didn't think people would even notice I was gone...seriously how stupid stupid stupid is that I mean what am I, a 16 year old girl who didn't get asked to prom??? No I am a women who knows what she wants, says it and sticks up for people who deserve it.

Sorry, I am finished and will hopefully get a few hours of sleep before driving my beautiful friend to the airport at 5:30 AM (She was my saving grace this week!!)

Sunday, October 16, 2016

Breathe.....Just Breathe

I finally realized I needed to do something, something different.

As long as I have struggled with headaches I have always had my go to pain medication and techniques to "fix" my headache and make it bearable. That's right to make it bearable, not make it stop, not prevent it from happening but to just deal with it.  So, when I finally saw a neurologist that said he could help me become headache free and medication free I immediately thought WOO HOO!!!!! This is going to be amazing and I can't even begin to fathom how great I am going to feel!

Then boom, Arnold had to come into my life, little did I know it had been stalking me and that it would be just a matter of time before it would cross my path and I would come face to face with it.
Well my plans to be headache and medication free went out the window with my introduction to Arnold.

So now here I was teased with a solution only to have it ripped away with the now pending pain and headaches from having brain surgery to remove a tumor.  What the heck was I supposed to do now, I am on a strict pain management system that I can't detour from, it consists of three medications.

My daily medication is an antidepressant that is supposed to help manage my headaches. It is supposed to decrease the severity and the duration. 

The second medication I take is an "as needed" pill called rizatriptan. I am only allowed to take a max of two pills a day and up to 4 pills within a week.  What that means is when I meet the max I can't take it anymore until it has been 7 days since my last dose.

My third medication cambia is also "as needed" and I can take it in correlation with the rizatriptan, once I have met my max dose I can take the cambia instead with the same limitations of 2 times a day with a max of 4 times a week.

Once I meet my max that is it, can't take anything else, to explain - the reason for multiple meds and a limited dose is to prevent pain medication dependency.

 I would say it does help but my neurologist said we need a few months to establish a pattern and because of my upcoming surgery I will have to basically start over.  He also said the narcotics I may be administered are not good for migraines but will be necessary for managing my pain from surgery, so basically I am between a rock and a hard place. 

This all makes me nervous obviously because I don't want headaches I despise headaches, my husband my kids they despise my headaches, headaches suck.  Sorry, I just hate them.. A LOT.

Anyway, so back to breathing.  I wanted to find ways to calm down and control my anxiety as well as lower my hospital induced high blood pressure so I asked those close to me for advice on what they use to help keep their blood pressure low figuring it would help with the rest of my craziness too.  
I was provided with a lot of suggestions from lowering my sodium intake to meditation.  The meditation option sang a song of joy to me and my friend sent me a link to a video on YouTube 

The video was so calming and it lead me to even more videos (similar to watching a cat video and then realizing it has been three hours and now you are watching videos of cute donkeys playing soccer)  I was lost in relaxation.  I had just gone three days with severe headaches and no relief from my medication so when I fell asleep listening to a meditation video and woke up without a headache and really felt amazing it was such an awesome feeling.  I have gone to bed every night since listening to a meditation video on YouTube and I sleep so well, I wake up rested and full of energy.

Now, I am pretty open minded and I know that not everyone is, so before you think meditation is fluffy and out there if you are really struggling with stress, anxiety or discomfort just try it once, just one time and see if it makes a positive change in your situation.  It doesn't matter if your situation is a brain tumor or an upcoming exam, stress is stress and comes along for many different reasons on many different levels.

There are so many videos that it may become overwhelming when you search but the ones in this blog are my favorites, I also included a version for hearing impaired that has some great reviews. I do have to warn you......these videos make you fall asleep so fast, if you just give into the prompts and allow yourself to relax :)

Thursday, October 13, 2016

My little girls

My daughters were the first people I told.
Henry Doorly Zoo - water park

Yes, there is a water park in the zoo!!
When I first found out about my tumor I immediately thought about my kids and my husband - I of course told him as soon as I got off the phone with the ENT and he was upset (I could tell even though he was pretending pretty well).  He and I discussed talking to the girls and he thought we should wait until I had more details.  Seemed like that was a good plan, but I just don't like to keep things from them, I can barely keep their Christmas presents a secret!

The day I found out was the same day I had a surprise trip planned for a girls trip to go to Omaha...if you have never been to Henry Doorly Zoo in Omaha, NE I highly recommend you go it was amazing!! It was one of the best mom and daughter trips we have ever had! We stayed in a hotel, went swimming, had breakfast in bed, did a riverboat cruise on the Missouri River and even surprised my youngest with a visit to see her best friend.  It truly was an amazing weekend!

I choose to tell them as we were headed home, I didn't want to have them thinking about it the entire time we were there but  I wanted to be able to tell them without any distractions and ample time to discuss it with both of them.

They are well aware I have suffered from headaches so it was the perfect way to bring it up to them. I talked about how I had gone to see a doctor because of the headaches I was getting and that after the MRI they did they found a brain tumor.........a little back story is that they have been through having to understand tumors so it wasn't a new thing for them.  Their cousin had a brain tumor removed when he was 4 years old called Juvenile Pilocytic Astrocytoma and he did amazing literally had emergency brain surgery and was home less than four days later HE WAS AWESOME!!  Fast forward to 2015 and my 18 year old cousin goes in for an x-ray due to pneumonia and finds out she has a mass in her chest and was diagnosed with a tumor called Ganglioneuroma.  Both of their tumors were benign and while my nephews tumor was also a brain tumor it was completely different "genetically", my cousins tumor was in a different location but more similar being as her tumor also grew from schwann cells and while there is also no known reason that it began, there is a genetic condition called Neurofibromatosis type 1 that can cause the growth of these tumors.  The genetic condition for acoustic neuroma / vestibular schwannoma is Neurofibromatosis type 2.

My girls of course had questions regarding surgery, scars, compared me to my nephew and then they seemed to back off and not really want to talk about it much more.  I had to respect that and try my best to put on a strong front to avoid making it a bigger issue than they needed to be aware of.  I would not hide it from them though, I still did my research when they were around, they watched surgeries with me and looked at scars with me and eventually they got fed up.  At one point my oldest (10 year old) straight up said "Mom, do we have to keep talking about your tumor and looking things up?" I told her I was going to continue doing research because it was helpful for me but she didn't need to watch or look at the computer while I was doing my research.  She also told me she didn't want to visit me in the hospital, I knew this was out of fear of going to a hospital and had nothing to do with her not wanting to see me so I said it was her choice but at some point I would be missing her.  I also told her I would still talk about it but that her and I didn't need to discuss it, she was content with that answer and it worked great.  My youngest (7 years old) played along with her sister and had similar feelings.

At one point I realized that maybe I was doing "too good" a job in being strong and not making a big deal out of it, that moment happened when I was getting ready to go to a simple doctors appointment and my 10 year old said " So mom what time is your surgery and when will you be home?" I literally laughed out loud and reminded her that this was just a doctors appointment and surgery wasn't scheduled just yet. I began to realize they didn't know their mom could possibly be in the hospital for up to 5 days or that my surgery would last 8 plus hours so I started thinking of ways to tell them those details without making their little wondering brains come up with crazy situations that were far fetched or unrealistic.

That opportunity came around at just the right time!  I was talking with my friend and we began discussing Halloween, by this point I knew me taking the girls wasn't going to be an option so she was offering to take them for me (my husband has to work Halloween night and can't take them either).  It was the perfect opportunity to talk about it.  I told the girls they get to go trick or treating with her and they were excited, I then said now she is taking you because I can't go since I will have just had my surgery....the wide eyes and questioning looks then glared back at me, I said I could still be in the hospital, that then began the discussion of how long and how many.  It was the best way to get that part of the discussion taken care of and the last piece of the puzzle for them!

I have them all taken care of while I will be in the hospital, certain friends assigned to certain days and certain activities. They have been amazing little girls and have been a tad more helpful around the house when they notice I am having a hard day and yet they still manage to be their crabby little selves and talk back and whine at all the right moments :) but overall their support has been wonderful, the extra three hugs every morning and the multiple kisses goodnight can never be enough.

Our other mom daughter trip to Bear Lake in Utah!

My daughters are special and they are my stars and my moon.

Wednesday, October 12, 2016

Volleyballs and Bubbles

I need to write because it helps me to express how I feel without having to hold it all inside and EXPLODE one day.  I am not doing good at the moment.  I am just having a difficult time trying to pretend I am doing good.  I realized this the other day while I was laughing so hard I was crying and when I calmed down it dawned on me that I just went 5 minutes without thinking about my tumor, wasn't worried about my recovery, I didn't have a running list in my head of things I want done or need to plan for.  The stupid thing in my head, the thing I have so "lovingly" named Arnold whom I am very ready to evict.

People have said to me quite often these words "well at least it isn't cancer" - OF COURSE that is one of the biggest blessing in this whole situation but what is in my head is still not supposed to be there and by finding it I now have to have a major surgery with real deal complications that can permanently change my quality of life.  I have no idea how I am supposed to accept what I am going through is difficult when there is always going to be the comparison.  Now maybe someone says something like that to try and cheer me up, and if that is the case then I am being a jackass for not wanting to hear it?  Of course I would be which is why I would never say anything more than "yes, I am so thankful it isn't cancer".  Even typing that I have that feeling sometimes makes me anxious but I know I am not the only person who feels this way and I want those people to know it is a difficult thing to have cross your mind.

When you have a brain tumor typically you are going to tell people what is going on and when that happens there are a few different types of people you may encounter.
 1.  Let me know if there is anything I can do (gives a specific offer i.e. I love to cook or let me take the kids after school), these people would actually make you dinner if you gained the courage to actually ask for help so do so because this will make them feel good which in turn will help you out. 
2. Let us know what we can do (notice they don't offer it themselves but make it more generic) these people will maybe give you a hug, and they may ask how you are doing but it will be in the hallway as they walk by, not stop by your desk or even send an email.
3. I am so sorry to hear this, I hope you get better soon (no offer to help if needed but genuine concern to heal), these people may want to help but might not have a single clue as to what they can do.  Don't put them out or expect anything from them, just remember them in the moments you feel alone and know that they are there for you if maybe you want to chat or just go get a coffee. These people would be perfect to have around to discuss anything but your tumor which is healthy and necessary so utilize it.

I have become lonely, I know it sounds strange but I have and because those around me don't really understand how I feel each day or that I am depressed because of this path I was forced to take it makes me feel alone.  I am thankful I have the online support group but those people who have gone through this or are going through this aren't available to just drop in for a visit or invite me to lunch, they are there at the drop of a dime to let me post my concerns and questions or to just vent but I need a lot of hugs and human interaction therapy.

My friend told me to think about the things that cause me stress and put them in a bubble and let them float away....she also said I could put them in a volleyball and smash them away as well, it really all depends on the mood I am in.  I love that she gave that suggestion to me because I know it works especially if she is the one telling it to me...she has been through hell the past few years and she is a damn rockstar and inspires people around her all the time, she is living proof that a positive attitude truly gets you far.

Now I just need to remember to be positive....

Diffuser necklace from my sister
t-shirt from my mom


Friday, October 7, 2016

Last day

Today was my last day at work.

While most people take time off work and have great feelings of joy and excitement, that unfortunately is not the same for me.....this time.  A few months ago I took time off work for a week at the lake with my family and it ended too quickly and I came back to work with a really nice tan.  This time around though a scar not a nice tan.

I was ready to leave work mostly because it was wearing me out having to focus on my job when my brain wanted to focus on what it was going through instead, rather selfish if you ask me.  I was ready to work on my self and prepare for surgery, spend some extra time with my kids and husband.  Ready to have lunch with friends and stay up late, without having to wake up in the morning and rush into work.   The problem is I am not ready for changes that I have no choice but to make.  I didn't choose to take work off until the end of January, I didn't choose to have a tumor that would cause me to go deaf.

love my work family
I was so sad to leave the office today, it was even harder to leave yesterday while most of my coworkers were there, today was a day when limited people are in the office so it was a little easier to walk out and to get things wrapped up.  This week I was treated to multiple coffee dates, lunch with friends every day and my dear friend at work made my last day a memorable one with flowers and bagels for breakfast followed by Sexy Pizza for lunch.  I received a wonderful fruit bouquet and a sweet gift from my boss along with plenty of emails wishing me the best and making me feel loved beyond belief.  My husband and I are even going to enjoy a three day get away at a cabin in the mountains courtesy of another coworker.  All the hugs and visits to my desk truly made it a good day.

There is always a flip side to everything though right?  All the kinds and love was yet again another reminder of what was happening and the forced change that was present.

Now let me point out that my surgery isn't scheduled until October 25th but I had an excessive amount of vacation to use and the necessity to clear my head.  I am thankful that I have a job at a company who cares so much for their employees.  I can't imagine going through this without their support in addition to the many friends and family so close by.  I am thankful I have the option to take time off before my surgery and to not have the stress of being out of work financially while I recover.

Most people know the saying "it could always be worse" and while I do agree with that we all need to remember that my worst is someone's "it could always be worse" - what I mean by this is that you can't always take solace in someone else's misery you need to accept that you are going through something tough and it is OK to accept help and admit that it isn't easy.  Never down play what you are going through because it is your own story and there is nothing worse than forgetting that.

I love people and being at my job allows me to be engaged with people I admire and look up to.  I am afraid of how lonely I will be get while I go through this, I thrive on people time and while my husband and my kids provide a whole other level of engagement they don't provide the level of interaction I receive from my coworkers.

I know my time away from the office will be long and that it will take time to adjust when I get back but I am already looking forward to getting back to normal albeit half deaf and a new scar.