Friday, March 28, 2014


This may be a short post.  I am still a little emotional, had a great day and don't really feel like reliving these last few days by retyping everything that has happened so not sure how detailed this will be. 

So basically my tumor is most likely a grade 3.  There is some room for interpretation and it isn't all black and white.  What one doctor may call a grade 2, another doctor may call a grade 3.  I am trying really hard not to get hung up on a number.  I am trying to focus on the good, that they think it's a slow growing tumor and the fact that I have no physical signs of the tumor are both really good things.  If it's a grade 2 or a 3 I can do nothing about it, so why obsess over it?  That is my stance on this. Treatment for both is essentially the same so I just need to regroup and get back to my good state of mind, I almost have myself pulled back together already.  Just trying not to think about stuff is the main thing.

Although this second opinion brought some pretty crushing news I am SO glad I did it!  So HUGE thanks to my high school friend Erin for contacting me and setting this up.  A another HUGE thanks to Best Doctors who did this for me.  They were amazing, they collected all my info and sought out the best doctors to review my info and came back with a full report including recommendations for treatment.  I could NOT have done this all as thoroughly or quickly on my own.  They were beyond helpful.

The good thing about this second opinion is that it brought my tumor back in front of the tumor board at Froedtert to re-evaluate the treatment plan.  I meet with my doctor next week to discuss but I did get my written report today from Best Docotors and they suggested Temodar which is the oral chemo that is supposed to be much easier on your body.  This is a chemo that you take at home, you take 5 pills during the month and I would do this for probably a year.  From what I have read I will be tired and the pills can make you really nauseous but the list of side effects is much shorter and easier to handle than the other chemo we were considering.  So we would do this for a year most likely and hope this keeps the tumor from growing for as long as possible.  Then when it starts growing again I would probably do this same chemo treatment again.  

It's a lot to take in.  Realizing  your tumor is probably more severe than what you originally thought AND coming really close to starting chemo.  I am sure no one ever thinks they will be doing chemo and it's a weird feeling knowing that you will be.  Maybe I just have too much time to think about it.  It didn't seem weird at all to do radiation but that came much quicker.  I have had so much time to think about chemo, maybe that is why it seems so different. I hope I handle it as well as I did the radiation, I am going in with the mindset that it won't be any harder than the radiation just a lot longer time frame.  
I can do this, I GOT THIS! 

I do have some really GREAT news that I am super excited about.  We met with a psychologist that will be working with Owen.  Jamie and I had an hour long meeting with her yesterday and it was better than I could have imagined.  I am SO excited to get Owen started with her.  From just the hour we talked with her, she already had so many suggestions for ways we could help Owen.  We really had three main goals that we want to work on with her, get Owen's anxiety under control, learn ways to better prepare him for medical stuff regarding himself and learn how to talk to him about my medical issues.  Owen goes in next week for his WADA test and we know he is going to be an emotional wreck.  She talked us through how we should talk to him the night before and suggested we make a sticker chart for everything that will happen that day so as he finishes each thing blood draw, iv, etc we can mark them off so he can visually see himself getting closer to going home.  A GREAT idea that should really help Owen.  I shared that idea with Owen's therapy team from the school district and they told me all his therapists would be working on that sticker chart for him.  Seriously, have I mentioned lately how much I LOVE them all?!  

Funny story about the child psychologist, Jamie and I both kind of giggled when we walked in because it was EXACTLY what I would picture one of these rooms to look like.  A large comfy couch, several comfy chairs, a pitcher of water, box of kleenex (which I of course used).  She asked up to have a seat anywhere we felt comfortable.  I immediately for some reason thought this was a test for us, where we picked to sit.  I sat in the middle of the couch, Jamie sat to the far end, never took his coat off and sat with his arms crossed at his chest the whole time.  The entire time we were talking with her I kept wondering if the way Jamie was sitting or the fact that we didn't sit right next to each other made an impression on her.  I laughed out it to Jamie when we got in the car. These thoughts apparently never crossed his mind.  His biggest concern was the fact that he still had water left in his cup when we were done and he didn't want to leave a cup with water still on the table but he didn't want to throw the cup in the garbage with water still in it either.  In the heat of the moment he made the call to just slam the rest of the water, even though he wasn't that thirsty.  Well played Jamie, well played.  Seriously, we laugh at each other so much at the stupid things that run through our heads.  If this doctor ever reads this blog, she will probably get a good kick out of this.  I am sure she didn't care where we sat but I am totally making a point to sit closer to Jamie next week JUST in case she's judging.  :)

AND... one more funny story for you.  It has to do with wig washing, bet you haven't heard too many funny wig washing stories have you?  The other night I was washing my wig in our sink.  With synthetic wigs you just fill your sink with water a little shampoo, dunk the wig, swish it around and then rinse.  Then you fill the sink up again, put some conditioner in there and let the wig soak for a few minutes.  So I washed it and then had it soaking in the water with conditioner as I got in the shower.  Well Jamie walked into the bathroom and started laughing. I poked my head out asking what was so funny and he said seeing my wig soaking in the sink totally reminded him of that scene in Planes Trains and Automobiles where John Candy has his dirty socks soaking in the sink and then Steve Martin dries his face with his underwear.  Such a classic movie!  Thought you might get a laugh out of that!  

Well I think that is all for now.  This ended up being longer than I thought!  

 I will be working with Froedtert on some charity type work and I am really excited about it but I just received word of some charity work going on right now at Children's Hospital of WI but another mom.  I want to get the word out on this.  Anyone that has had a child at Children's for any extended period of time knows how challenging it can be.  You are exhausted, your child wants to go home, you are without the comforts of home.  We have had our fair share of stays with Owen.  Thankfully our longest stay was 6 days, I know there are parents there with their children for months on end.     
Well a mom that also experienced a hospital stay with her daughter is putting together a fundraiser to help provide gift baskets to moms that will be spending this Mother's Day in the hospital with their sick children.  I STRONGLY encourage you to check out the link below and donate if you are able.  Even $5 can make a difference.  I can tell you from experience, having a child there is a very challenging time and I would love to see everyone come together to help these moms have a happier Mother's Day! 
click below for more info on 

Off to shower and soak my wig.  ;)  
Night everyone!

ps - too tired to proof read this, hope there aren't too many errors. 

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