The Diagnosis

We had to wait over a week for the final diagnosis.  Our surgeon, Dr. Nader Sanai is the head of the tumor board and Director of  the Barrow Brain Tumor and research center.  We new it was a level two (which is good) and we knew it was a slow growing tumor (which is also good) but we didn't know if it was cancer or not.  We met with the Neuro Oncologist and finally got the information to proceed with treatment:

The tumor was a low grade level 2.
It is a Glioma called Astrocytoma.
It can be and is a form of cancer.
It comes from the brain and a gene mutation.  It is not hereditary, it didn't come from something he ate, drank (diet soda) or was exposed to, and it isn't from his cell phone.
It was a slow growing tumor.

They will be doing genetic profiling on Tom and the tumor for the future in case anything else comes up they will already have a full genetic profile ready to go. 

The first treatment - Surgery - Removed 95% of the tumor.
The second treatment - radiation - 5 days a week for 6 weeks
The third treatment - Chemo - a pill taken at home 7 days a week for 6 weeks.
(Both these will be done at the same time)

The doctors are very hopeful these treatments will get rid of the tumor permanently.  They said this is the best type of tumor to get if you were to get a brain tumor.  Tom is healthy, doesn't drink, smoke or even drink caffeine.  He has no other health issues and his brain is very smart from all that schooling so it will be easy to retrain the brain to his normal old self.  Tom is excited because he says he will be even smarter than before since that softball in his noggin isn't slowing him down. 

Tom will be very busy over the next 6 weeks with speech therapy, neuro rehab, radiation and chemo.  I'm telling him it's like a mini makeover on his brain.  Six weeks of hard stuff then a lifetime of greatness!

His scar is amazing and healing up so fast! 

They only shaved his head where they cut! 

Tom's Tumor Part 2

After our initial visit to the hospital and multiple tests they decided on surgery in a week.  What a blessing it was to be able to come home for a week!  Tom was able to call his clients and tie up loose ends at work.  He also got all his church responsibilities taken care of and farmed out to other people. 

Wednesday morning the 17th we head to the hospital bright an early.  We met the whole Neuro Team.  They Go Big over at Barrows!  Everyone was very efficient but friendly and calming.  While we were waiting in our little pre-op room my brother Matt showed up.   He made things less stressful and fun.  Pretty soon it was time and Tom was wheeled away. 

We went to the O.R. waiting room where they gave us a pager to keep us informed every hour along with an amazing nurse named Janice.  Her job was to go in and out of all the O.R.'s and get info for the family.  She sure made our life fun in the waiting room.  She was a ray of sunshine in that dreary room.

We had a whole corner of comfy chairs that were filled with friends and family while we waited for Tom.  **I will NEVER again send Tom alone to the hospital while I have surgery like I have in the past.  I feel so bad that I didn't think to have someone with him.**  I could NOT have made it through the day without all the distractions I had going on.  We played games, made everyone a bitmoji, told stories, read magazines, ate and ate and ate (stress eating of course), colored in those new cool coloring books, looked at Instagram, Facebook, Pinterest, who knows what we did but we had fun doing it!

About two hours after they started surgery the nurse came in and said the surgeon wanted to meat with us.  What?  This was supposed to be a 4-6 hour surgery or more!  We went into a room and waited.  The surgeon came in and said that they tried to bring Tom out of the anesthesia so they could do the functional part of the surgery and they couldn't control him so they had to put him back under and try again tomorrow.  They had cut his scalp and cut his scull but hadn't touched his brain so it would be safe to try it again.  Tom had woken up and not know where he was and tried to get up and ripped the Wilson halo out of his head.  When they doctor told us both girls and I said, "ahhhhhhhh" because you DO NOT WAKE TOM UP FROM A DEAD SLEEP!  He will fight you, HaHa.  Although in this case it wasn't very Haha!

We waited to go see him in recovery and boy was he funny!  Good thing he was so funny since we had to do it all over again the next day.   Made it easier not to be mad at him (wink)

Fast forward to the next day.  His surgery was scheduled for around four but they got him in early and was wheeled out about 1pm.  The party continued in the O.R. waiting room with Janice, all our friends and family and our comfy corner.  This time we didn't get to see him until 10pm.  Now that is a long day!  Round two was a success.  They tried to wake him but he had another reaction so they put him back under and finished the surgery.  Our doctor and his team were amazing.  They explained everything so we could understand, they were nice and kind and patient with all of our questions and the best part was they performed a successful surgery and removed the tumor from Tom's brain! 

We initially thought the tumor was the size of a ping pong ball.  But after they got in there they found that what we were seeing was the nucleus of the tumor and it ended up being the size of a softball if not a grapefruit! (Dr. Sanai's words)  We just can't believe Tom didn't have any other symptoms than that one seizure!  They said the tumor was slow growing and had probably been growing for....years! 

Now looking back there were a few small signs but we just thought it was because of getting older.  Tom had been having a hard time hearing in a large group or with noise in the room , his eyesight was getting blurry, and he was having some memory issues -things like names, dates, times and small things.  I thought he just wasn't listening to me when I told him things.  In fact, four months prior I had him stop drinking his favorite diet coke because I read that it caused memory loss!  Nope, it was the tumor!  The doctor said that this tumor was caused by a gene mutation and was NOT hereditary, something Tom ate or was exposed to or anything he did.  His brain just decided to grow this tumor.  I joke that Tom is so smart his brain had to grow a new storage facility to house all the information he keeps putting in there.  This is a joke.  Tom didn't understand the joke.  I guess you can't joke with people who just had brain surgery.  They take everything very literal.  Oooopps! Wife fail.

I am so very thankful for an amazing support group that has literally carried our little family through this shocking and scary ordeal.  I could not have done it without our family and friends and church family near and far.  We have received calls, texts, emails, notes, cards, food, treats, our house and animals have been taken care of, all of our needs have been met.  Toilet paper, shampoo, random things we needed just showed up!  I know this a little thing but those darn bitmoji's saved my sanity this week.  I kid you not.  When I would get one of those in a text it made everything better.  I think humor is great medicine in stressful situations.  And bitmoji's are very humorous! 

 

A Little Complaining

I know I shouldn't,
but........sometimes I just have to get it out.

I hate that I have a scar on my neck. It's big, red and still hurts a bit. It's very noticeable and hard to hide. Everyone is very positive about it. They say, "it looks great, hardly can see it, WOW it's not as bad as I thought!" And so on...........

But I can see it.
I can feel it and I don't like it.
Not one bit!

I know I should be grateful. I could have had a worse case of cancer. I could have no hair right now. I know this and I am grateful. But it's still hard and not fun.

Last night my neck hurt, not like a stiff neck but the front of my neck felt swollen and sore and it was hard to talk and felt uncomfortable. My scar was sore and I was so very, very tired. I'm always tired. I'm also so dry. My skin, my lips, my mouth, my throat. I feel like every ounce of moisture has been sucked from my body and I can't replace it. Tom asked me yesterday if I was back to "normal", I laughed at him. He asked what percentage was I of being "normal" I thought for a minute and said, "50%". He was shocked! "What? Are you kidding me?" Yes I know, I'm a good faker. My arthritis is flaring up, my neck hurts, I'm gaining weight even though I'm watching what I eat and I'm oh so tired.

Again, I don't like this.

Why do I have to be the one with trial after trial. We come to this earth to gain a body and learn. What am I not learning?

I guess I better step up my game and figure it out. I don't want another trial anytime soon. I'm already having a hard time getting through this one!

My Adventure

I'm not radioactive anymore!
  Yippeefor ME!!

Over Valentines weekend (of all the weekends) I had to take my I-131 pill. This is a radioactive form of Iodine that kills off any remaining cancerous thyroid tissue, cells and I'm sure other things that I wanted to keep. I had to be totally isolated for 4 days and then I had to stay 3-5 feet away from people for 10 days. Did I mention this was OVER VALENTINES WEEKEND???

The Dr. office gave me some ideas on how to stay away from the family. I chose to stay in a Hotel. Now I know this is a bit of a controversy but let me explain that no one was in danger and I was very careful the entire time I was gone.

While I was booking my Hotel I was praying - "please let me get a good hotel, please let me get a good hotel". I use priceline and have always had excellent results with getting very nice high star hotels for very little money. Very little! This time was no exception. I was lucky to get a 3 1/2 star Hotel for cheap on this very busy weekend but when I looked at the pictures I was very disappointed. The Hotel was a Golf Resort and was older.....much older lets just say. I was picturing in my mind that I wanted to stay in a hotel similar to the one we stayed in in West Hollywood-pure luxury! No such luck. To say I was not looking forward to this weekend was a HUGE understatement!! And the hotel was just one of the factors!

So on Thursday I went to Scottsdale and was given my little tiny white pill in a little tiny clear glass vile with the yellow and black radioactive sticker on it and all I kept thinking was - this is wrong! So wrong! I don't want to do this, I don't want to do this! I am ingesting something so horrible into my body - what am I doing?????? Again, I said another prayer to help me get through this.

I then headed to the Hotel. When I got there I was still a little disappointed. It was pretty, but old and lets face it, I'm now spoiled in my hotel stays. When I got to my room there was a beautiful little table set up outside my door with roses, a card and a home made no iodine meal just for me from Monica. That made me feel a lot better and want to cry all at the same time! How sweet is she? When I got in and settled I realized the room wasn't that bad. It had a very nice, very comfortable bed, a sitting area with two reclining chairs and a little kitchen with a fridge, microwave, table and chairs. "Maybe this won't be so bad" I thought.

Over the next four days I realized how lonely living alone is. It's horrible!!! I felt so bad for my Mom who lived alone for five years before she died. My Grandma for 30 years!!! Maybe they liked it, I don't know but I vowed that anyone I knew who lived all alone was going to hear more from me!!! It's a weird feeling to not have to use your voice all day. When you do use your voice it sounds funny to you because it breaks the silence and then doesn't sound right. I always thought that I would be fine if I had to live alone. I'm an independent woman. I can be by myself just fine thank you! Well guess what? I have changed my tune! I always have told Tom that if he dies I'm NOT going to remarry - nope- no way! When I got home from this weekend alone one of the first things I said was....."I'm getting remarried if you ever die." Nice of me huh?

I did get several doorbell ditches from Mindy and Monica bringing me yummy food to fill my tummy. I also texted Crazy Mama -Julie the first night I was there letting her know what was up and the sweetie came right over and hung out with me all night~ We watched Grey's Anatomy and Private Practice. I sucked on the sour candy she brought along with other Valentine goodies. She could come over because she's already been through this and doesn't have a thyroid. I couldn't hurt her so she dropped what she was doing and came. What a friend!
My other friend Kim came on Saturday night after calling her Dr. friend and getting the O.K. to come with instructions to not kiss me or let urine get in her eye. Yeah - I think that wouldn't be a problem! We had fun and even though we didn't go get take-out (*I wasn't feeling well) we had fun talking the night away!

I spent most of my days laying on the comfy bed watching T.V. or playing games on the computer. I did feel sick for most of the time even though the nurse said that wouldn't be the case. I would venture outside each day to sit in the sun and increase my vitamin D along with warming my bones. No one was around - I mean no one so I could sit at the pool (which was right outside my door) or on my patio and read or sleep without worrying about infecting people.
I then realized that I was blessed in getting this Hotel. Heavenly Father knows what I need more than I do. He blessed me with a Hotel that had little casitas, with no people around and access to the outside without having to go through hallways, elevators etc. I could sit outside without having to worry about people and safety. If I hadn't been able to go outside and get fresh air (I am a fresh air freak) I would have been so miserable. I was truly blessed.

By Monday I was more than ready to get home. Let me tell you! I was ready to put this horrible, boring, depressing situation behind me!! I woke up at 5:30 am and hopped right out of bed and got ready! I was checked out and in the car heading home by 7:30am. (Don't worry though - I cleaned the entire room before I left. the nurse told me how and I didn't leave one radioactive germ living - I promise!) I stopped off at Krispy Kream and picked up a dozen yummies and headed home to my sweet family! We were so excited to see each other. We opened cards, presents and shared the love that we have for each other and vowed to never be apart again! I'm so lucky to have my sweet family!!! Blessed is a better word. I am so very, very blessed!

I'm Back

I'm back....finally.
That was a very long hospital stay.
I was ready to come home on Tuesday!
But Thursday night at 10pm I got to come home.
Yippee!
Everyone at the hospital was very nice.
The nurses were amazing and oh-so-sweet to me.
I was in the VIP room which was nice...I guess. I don't know why it was called the VIP room. I sure didn't have a VIP view. It was a big room, but then again I was in the bariatrics unit.
I'm just happy to be home.

I haven't talked about why I needed surgery much. I haven't said anything on the blog at all and in real life very little. I usually try and keep my health problems on the back burner. If I talked about my health problems openly that's all I would have to talk about. So I choose not to talk about them if possible even though I do have quite a story to tell:

10 joints replaced
(7 done in less than a year)
4 hip replacements,
4 knuckles replaced - 2 on each hand
and both wrists replaced,
Juvenal Rheumatoid Arthritis for 22 years
and now Thyroid Cancer.

Thyroid Cancer!!

I still can't believe it. I always said I wouldn't get cancer because there are too many other things wrong with me. Guess I was wrong. Very wrong!! Darn it.

Lucky for me Thyroid Cancer is treatable....curable......easily. With surgery, pills, and radiation it will be gone. My thyroid is gone as of this week, I have many, many, many pills to take and I'm not sure yet about the radiation. I'm still looking into that.

I feel very little pain, however my neck is swollen and sore and my voice is scratchy. It's hard to swallow because of the swelling so I have been eating a lot of soup. I love soup. It's such comfort food isn't it? Oooh I had cake today - yummy, yummy cake! I can't forget about that. And I had a nap. Thankfully my MIL was here to go get Abby because I was dead asleep.

I have fun stories to tell of my hospital stay. I also have a lot of pictures thanks to Abby and Cass to go through. Thank you for all your sweet e-mails and calls, texts and visits. I appreciated every one. I did have Internet there in the waiting room and could look at blogs but not post on mine. I would have been giving a play-by-play if I had. I was sooooooo bored! Beyond bored! Crawling out of my skin bored. Good thing I'm home!

Check back soon for the hospital highlights! For now - I'm off to watch last nights Burn Notice. I'm so excited I can't wait any longer!