Tuesday, November 6, 2012

My Curve Ball

What a journey I have been on. Thanks for all your prayers and support. You never know when life is going to throw you a curve ball, and for me, it was pretty scary for a little bit. I am sure many of you have heard bits and pieces of what has happened, but to cure your curiosity, I will tell you in my own words exactly what went down.

A few years ago, I started having really bad headaches (don’t start freaking out just because you too have bad headaches there is more to the story). About the same time, or soon thereafter, I also would get dizzy really easy. (I thought I had vertigo). Sometime around when this all started, parts of my face and lips were going tingly on and off. At that point I decided to go to the doctor. He advised me to get an MRI, but the insurance we had would not cover the cost of an MRI, so we decided not to get one at that time. Soon thereafter, we moved to New York for my outstanding hubby to attend law school. The symptoms never went away. They would constantly come and go. I again went to see a doc who sent me on to a neurologist. He sent me to physical therapy for vertigo. It didn't help. Even the therapist said I wasn't the usual vertigo patient. I got pregnant with CaeI and then got kidney stones. I had so many other pains and discomforts that I did not pay much attention to what was going on with my head. After Cael was born, he was such a bad sleeper I contributed it to not getting any sleep. The longer it went on the worse everything got. Headaches, earaches, jaw pain, feeling like I had a cavity. Just didn't realize what was really going on.

Ben applied for BYU law school this summer and we thought the chances of him getting in were like 10%...never thinking we would get in. Well to our surprise, he got in but we didn't find out until the first of August and school started the 20th of August. So we made a fast move from NY to UT. We got settle into our new apartment. Things were getting worse with the dizziness and it was getting to the point that my face would go numb. It felt like I had just got out of the dentist and my checks, lips and tongue were trying to come un numb. It was a weird feeling. I was trying to find a doctor to go to but everyone I tried was booked for a few weeks.

A few weeks later I went and played volleyball with my friend Rachel. It had been a while since I had played and figured I would be a little bit rusty. Well the longer I went on playing, the harder I found it to even find the ball in the air. Every time I looked up I was so dizzy I couldn't even see the ball. It was then I realized just how bad things were getting. The next day I made a ton of phone calls and was able to get into a doctor that next week. I went in on Monday September 10. I told the doctor all my symptoms. I figured since I had gone through this step before, he would send me to a neurologist before he would send me for an MRI. Well to my surprise, and blessing, he said let’s get you scheduled for an MRI to see what is going on. I was so happy. I thought for sure I would have to see more doctors before I reached that point.

I was scheduled for the MRI Wednesday morning, Sept 12. I went into have the MRI and the tech asked me if I was nursing or pregnant because they have to put a dye in you that shows all the nerves. I told him I was nursing. He went and talked to the Radiologist and he thought it would be ok if I didn't do the dye. They would just get scans of the brain then I wouldn't have to worry about pumping and dumping. I was put in the tube trying to take deep breaths and trying not to think about the small space I was in. Anyone that has had an MRI done before knows what I’m talking about and I was shocked by how loud it was. About 15 min into the scan they pulled me out which I thought was weird because they told me I was going to be in there for around 30 min. When I got out, the tech came up to me and said, “Because you are having vertigo, the Radiologist wants to put the dye in so we can see all the nerves. The tech was acting kind of strange the whole time after he pulled me out and I wasn't sure what to think about it. He then put me back in and said it should take another 20 min.

After finishing, I asked the tech how long it would take to get the results. He said if your doctor does not call you by tomorrow you make sure you call him. So I left not knowing what to think. I knew the tech couldn't tell me anything but he was sure acting strange. By the time the afternoon rolled around I still had not heard anything. I kept telling myself, well no news is good news right? I figured if something was really wrong they wouldn't have let this whole day go by without calling me. That night we took the kids swimming and never heard from anyone. That brought some relief. My mom and I both believed I would have got a call if something was wrong. The next day I did my usual day. In fact, I remember that day I felt really good. My head wasn't hurting, I wasn't tired and I had more energy than usual. I was thinking to myself, I feel really good today. That is a good sign. Everything is ok.

That afternoon, Sept 13, at about 4:00, Ben came walking in the door. I was so happy. Ben never comes home before 6:00. It meant we had a little time to go outside and play with the kids…we don't get many afternoons together. Ben was home maybe ten minutes and my phone rang. I looked down and saw it was the doctor office. Right when I noticed the number my stomach just hurt. I went into the back room to answer it. The doctor was on the phone. He said, “We have your results from the MRI.” He said, “I hate doing this to you on the phone but I don't have much choice. It looks like they found a tumor.” He said, “The good part is it is on the outside of your brain so it is easy to get to. It is about 2mm by 3mm.” I don't even remember what I said back to him. I was in so much shock. I walked into my closet and dropped to the ground. He said, “We need you to go to the ER as soon as you can get there. I have just talked to the surgeon that is on call. He has looked at your scans and wants you to come now.” He then informed me that the doctor that was on call that day was one of the best and I would be in good hands. I hung up the phone not even crying but in shock and Ben standing by me knowing something was wrong. I tried to tell him the best I could what I had just been told. Sitting in my closet in tears, both of my kids came in. Cassidy put her arms around me and Cael just sat right in my lap. It is crazy how kids can sense when something isn't right.

After Ben calmed me down, he got on the phone and called my friend Rachel and asked if she would take the kids. She was my life saver that day. At least I knew they would be ok with her. We grabbed a bunch of stuff and headed out the door. Ben made all the phone calls. There was no way I could even talk to anyone on the phone. He called my parents who were at my nephew’s birthday party. I felt so bad because I knew it was going to ruin it all. They were in St George and had to drive back to Enterprise to get all their stuff because they didn't know how long they were going to be gone and then headed to Provo. After dropping off the kids, we headed to the ER and checked in. I was told they would be waiting for me and the doctor was in surgery and would be with me as soon as he got out. They took us back to a room and we probably waited there for the doctor at least 2 hrs. Thank goodness Aunt Karla came and visited while we waited…she help lighten the mood. You never know what you are going to see setting in the ER so at least we got a little bit of a show ha ha.

After what seemed like forever, the doctor came in and looked at me and said, Wow, you look good.” I was shocked by the response. I didn't know how I was suppose to look. He then asked me to stand up and walk in a straight line. I had never really tried to do that for awhile and to my surprise I wasn't good at it at all. You would think I had been drinking or something. Then he had me do a bunch of other things to test me. He then had me follow his finger with my eyes back and forth. He said to my family, “See, there it is.” As my eyes were following his finger, my eyes would bounce…they wouldn't move back and forth smoothly like they should. I thought to myself, “Well that explains the dizziness.” After he got done doing that, we walked over to a computer were I saw the scan of my head. I sat down and was in shock after looking at it. I was told the tumor was only 2 mm by 3mm that is like the size of a cherry or something. As soon as I looked at the scan, I knew it was much bigger. He told me the reason I had to come in today is because the tumor was so big it was pushing on my fourth ventricle and starting to close it off. I didn't know a dang thing about the brains but I was learning fast. The fourth ventricle has fluid that runs up and down it and if it gets closed off, it means big trouble. He said I was lucky I had not passed out yet for how small of space was there. If it would have closed off, it would have caused a lot of brain damage, and in my case, it was only time before it was closed. He told me that these kinds of tumors are usually benign 99% of the time but we would have to get it out to make sure. He said this is a big tumor so I’m not sure what I will find when I get in there. There was a chance I could come out with a droopy face on the left side, hearing loss in my left ear and a lazy left eye. I will admit it was hard taking this all in. I remember thinking to myself, when am I going to wake up? This isn't happening to me. This is not my life. Somewhere in all the middle of it, I heard on top of it they were going to have to shave my whole head. WOW!!!!!!!! It was a lot to take in. I was going to come out looking like a totally different person and in the back of my head wondering if I was going to come out at all after looking at that picture of the tumor.

After the doctor got done explaining everything to me, he was standing to my side and came around to the front of me and just looked at me. I looked up at him and he said, Are you ok?” I said “I’m in shock. This is a lot to take in.” He said, “I know. That’s why I want to make sure you’re ok.” He then started to talk to his assistant about what day to do the surgery, Friday or Saturday. He said, “I have to talk in Stake Conference Friday night so I would like to do the surgery Friday morning so I can make sure you’re ok before I leave town Sunday. It was then I learned that my doctor was in the Stake Presidency. He asked if it was ok if he prepared his talked during the surgery. I told him as long as he was talking to God while he was doing it, I didn't care at all. After that I felt so much peace come over me. I knew I was in good hands and I knew I was going to be ok.

After talking to the doctor, I was admitted to the hospital and was started on steroids to help shrink the swelling. Not very often does the ICU have patience that can walk to their beds…I was one of the few. They had me stay right in the ICU. That made it a little hard because normally they will not let kids in but thanks goodness they made an exception for me. Aunt Karla went and got my kids and brought them to see me one last time before my surgery. It was an emotional time because I knew things were going to change after that night. I was hooked up to all kinds of tubes and didn't want to scare my kids. It was hard to hold Cael with all those tubes.  My parents finally made it and were shown the scan. As time went on we found out by word of mouth that I had the best surgeon in the area. He is top ten in the nation. I think that night was the longest night of my life. I don't think I slept for one minute.
I made my dad take this pic of me the night before so I could compare it later to see if I had a droopy face
After what seemed like forever, 6:30 finally rolled around. Ben and my mom were there with me when the doctor came in. He said that he had gotten a good night’s rest. He said, You are prettier and younger than most patients I see. But that also means you are a young mother and that puts a lot of pressure on me. But I like pressure.” They wheeled me down and I was told Ben and my mom could wait in the holding room with me. When we got down to the OR floor they stopped and said we would need to say goodbye here. We were shocked and then they wheeled me off to a room all by myself to wait for 45 minutes. That’s a long time to sit and wait with your thoughts. They took me in about 7 am and wheeled me out about 1:30 pm.

As the surgery progressed, word would go out to my family about how the progression of the surgery was going. I remember them waking me up and asking me to move my tongue around. As far as they could tell, there was no nerve damage. By the way, the tumor ending up being the size of a baseball. I will never look at a baseball the same way. The doctor thinks that it was a slow-growing tumor that I have had for about 3 years.  I stayed in the ICU for two days. The first day felt just like I had had my head cut open. I was on a lot of meds and so I felt yucky. I had about eight different tubes running out of me. They had me up and walking the first day. The morning of the third day they moved me to a room. The bouncing of the ride about killed me. Doctor Riechman had no mercy and ripped the bandage off the incision site before I even knew what he was doing.
The day following surgery
I was in the hospital a week. Talk about feeling lucky that I didn't have a saggy face and they ended up not shaving all of my hair. Just leaving what they needed leaving me something to work with. I didn't realize how lucky I really was until I went back to get my stitches out. When my mom and I walked in and she told them Marsha Wilson is here to get her staples out every head in the office looked up. They asked my mom how I was and where I was. They all knew my name and my scans had been passed around in the office. The PA came in helped take 32 staples out of my head and he kept commenting on how good I looked and that my face isn't droopy. He asked if I wanted to see my tumor and pulled out his phone. I said, “My tumor is on your phone?” He said, “Well it is one of the three biggest tumors that I have ever seen. I use this for educational purposes. I wouldn't have missed that surgery for nothing. All your nerves were glowing there in your brain stem.” As my mom and I walked out, we looked at each other and said I think I dodged a bigger bullet than I realized.
My 32 staples
My nice scar and shaved head
After three weeks I moved down to So. Utah and I started noticing my incision was getting squishy and I felt like there was a brick on the back of my neck. I got in so much pain that we went to the ER in the night. They did a CAT scan and saw that the fluid hadn't gone down. Fluid had filled the baseball size hole and was supposed to absorb itself. It had gone down about half way when I went to So. Utah and then it just didn't keep absorbing like it should have. My doctor was in California so I had to wait a week for him to get back and decide what to do with me. We went back up north and after testing, he decided it was best if they put a shunt in. He had thought about putting one in at the time of the surgery but because I was young he decided to see if my body would take care of the fluid without it. On Monday, Oct 15, they went back in and put in a shunt that will stay in for the rest of my life. It has a pressure value that drains the fluid off. It goes from the top of my brain down by my left ear, down the middle of my chest and drains into my abdomen. They told me I would be in the hospital for two days so I thought it would be an easy surgery. They didn't explain that if it drains too fast, the effects that I would have would, in a sense, be like a brain trauma. I ended up staying until Friday because the pain caused so much stress I threw up every time I stood. They told me my brain had to adjust to having lots of pressure to no pressure and even my heart had to adjust to how much blood it sent to my brain when I stood up. It felt like this surgery was harder than the first. The doctor told me this is not like the flu. You can't just expect to recover that fast. This is going to be a long journey.

I am now three weeks out from that surgery and each day is a little better. I have to look at the small progresses and take everything in baby steps and use lots of patience. This has been the hardest road I have ever traveled. It is so hard to watch other people taking care of my kids. It is so much harder being the receiver than the giver. Looking back at how everything has fallen together, I feel so blessed because I can see the Lord's hand in it all. From the moment of Ben getting into BYU, right down to the day I got called into the ER causing me to get the doctor I did, it is clear to see the Lord's hand in it all. I can't imagine going through this and being in NY. I hope there are no more hiccups and my progress moves forward. Through this trial I have had so much support from family and friends. I have really felt your support and hope one day I can repay you all.


Telsha Winger & fam said...

Wow! What a story! I am so so glad everything has worked out the way it has. I'm so sorry you have had to go through this. I cannot believe it was baseball sized. modern medicine is amazing! l hope you get feeling better very soon!

Jessica said...

So sorry you had to go through all this; so happy that it went as well as it did, though. Glad you wrote it all down to share. Made me cry.

Andrea said...

Wow! Glad you are doing so well. Our thoughts and prayers are with you. Hope you continue to feel better!!!

Brittany said...

Thinking about you every day! Still get emotional reading this and seeing all that you have gone through these past few months. Ronnie and I think you are pretty much A-MAZ-ING! Counting down the days of your recovery so we can go celebrate aka a Cruise, Hawaii etc. ;!

Robyn DeGaetano said...

Thank you for sharing your story - so scary, yet so amazing to see how much you went through and that everything has turned out okay. I'm sure you are looking forward to when you can be more independent, but I'm also sure that there will be so much that you will learn from this experience and from being served so much by others (I speak from personal experience on this one...).

I am so glad that you are getting better, even if it is slow progress - we will keep you in our prayers.

By the way, Lou was reading this with me and said to tell you that after all this, you still look great! :)

Lynette Barlow said...

You have been through so much and I am glad you are doing so well. It's amazing how miracles have worked in your favor...I don't think there were any coincidences at all!! Keep getting better and know how much you're loved!!

Margaret Luna said...

You story is a true blessing for me! It helps me realize that you facing your struggles and making it through shows me that with my physical struggles has it fairly easy! My thoughts and prayers are with you!

<3Margaret Luna
One of your many cousins

Kali said...

Marsha I'm so glad you're well enough to write this post! I've thought about you so much since hearing about this trial in your life. It's so amazing how the Lord works. You are amazing and I'm continuing to pray for your recovery!

Bobbi Simkins said...

Glad to see you are feeling well enough to Blog :) Thanks for sharing your story. I always miss out on the details being married to Luke ;) We are so blessed to still have you around!