Wednesday, January 8, 2014

Damn..... the jokes on ME!

So for those of you that read my blog yesterday, I included a photo of Jacob, my 18 month old in a policeman costume and joked that he reminded me of Danny Devito in the episode of friends when he makes an appearance as a stripper.  Turns out the joke is on ME and I will be the one who looks like Danny Devito.  We learned a lot of stuff today at my doctor's appointment and one of the first things we learned was that they will be treating the whole crown of my head, which means I will be losing all my hair at the top of my head to look just like Danny Devito.  I will get into more details about this and more doctor info in a second but can we all take a second to acknowledge that this hair loss just plain sucks! 
 Ok... everyone on board that this totally sucks?

 Alright... now let's all move on together.

My hair......will be ugly..... for awhile!

Deep breath........tough shit...... get over it..... it could be worse, it's hair, it will grow back!

I know I have lots of people waiting for the full doctor update.  I haven't really even talked to my family yet so here it is....

We dropped Owen and Jacob off at school at 8:30.  This was their first time back in 3-1/2 weeks so I was nervous but they were both actually really excited to be there so that was a very pleasant surprise.  Then Jamie and I rushed to Froedert for my 9am appointment with the radiation oncologist.  We started in the Hope Clinic which is calm, very zen with tons of sunlight pouring in all the windows.  I like it there.  Then someone came out to tell us that the doctor was actually up in the radiation area and that we should head up to the third floor to meet with her there.  Okay, sounds good, we will get to check out where we will be spending a lot of time.  Yikes, totally different vibe up there.  REALLY crowded, screaming babies, dark, not the Zen oasis of the Hope Clinic.   I looked at Jamie and said "i don't like it here".  We grabbed some seats as far from the chaos as we could and waited for them to call my name.  We didn't have to wait long and when we got out of the waiting area it was MUCH better.  Calm, quiet, better for my emotional well being.  I got weighed and thanks to everyone and their amazing kind meals and desserts was back up to pre brain surgery weight.  :)  Then we got to meet with my new doctor that will be over seeing all my radiation treatments.  I LOVED her.  She was down to earth, sweet and very easy to talk to.  We got to see lots of images of my tumor, I can't even describe the feeling as you look at a computer screen and see images of a stupid tumor that is in your head that they just can't go in and take out.  Jamie, being Jamie asked again the size of the tumor.  The doctor replied 7cm x 2cm x 3cm to which Jamie replied the only natural response he could come up with "so like the size of a twinkie".  I about peed my pants laughing.  So now I just picture a giant twinkie stuck in my head which I guess is less scary than a tumor. (for the record I googled the size of a twinkie and it's 9.9 cm so a twinkie is a little LARGER than my tumor in case you were wondering.)

So the doctor wants us to start radiation as soon as possible.  The plan is to kill off any and all tumor cells to keep this thing from growing.  The tumor is all on the right side of my brain but there is a nerve path right by it that crosses to the left side of the brain.  There is currently NO signs that anything is crossing over but there is the chance so they want to treat the whole top of my head, hence the Danny Devito reference at the beginning of the post.  I will undergo radiation 5 days a week for 6 weeks straight and then PRAY that it kills this tumor!!!  Chances are the tumor will grow again, we just hope and pray that it doesn't grow for a long, long, LONG time.  I will be closely monitored with MRIs every 3 months and the second they see any change or growth we will have to take immediate action again, most likely chemo.  In a perfect world this would happen in 15 or 20 years and then the chemo (or whatever ever other technology they have) will keep it from growing for another 20 years but it's just unknown.  It could start growing again in 5 years or in 3 months, there is no way to know.  They do tell me there are LOTS of signs that this is a slow grower and I feel in my heart it is so please pray for that!  

She also went over short term side effects of the treatment:
* Fatigue, will set in about 2 weeks after treatment starts and can last months after treatment ends
* Hair loss - the radiation basically kills off the hair follicles so as the treatment begins my hair will just slowly fall out.  :(
* Sore throat - although they try to avoid the radiation hitting the back of your throat but the angles they will be hitting this thing from will most likely mean my throat will get some radiation which gives you a sore throat and just kind of changes your taste for things.
* Sore ears for the same reason as above
* Seizures!  

My brain is very likely to swell during the first few weeks of treatment which is what led to my first seizure, so they will be keeping me on a low dose of steroids through the first few weeks but I will still be on high alert for seizures.  This just plain sucks!  Scares the crap out of me too, I NEVER want to have another seizure and walking around for 3 weeks knowing my brain is probably swollen will have me over analyzing EVERYTHING!  Plus I won't be able to alone with the kids at all in case something happens so basically we need to find someone to be with me at all times the whole time of radiation.  :(

She also went over some long term side effects, most of these were just disclaimers they have to give you that aren't really going to happen.  Extreme brain damage, etc.  But she said that a real long term effect that they see often is just an overall decrease in cognitive abilities.  Nothing extreme but enough so that people can tell.  So before I start radiation I will have to undergo a whole series of tests to get a base line and then after radiation I will undergo the same tests to see if and what type of therapy and help I need to try and regain any skills that may be lagging.  Weird that I will be undergoing all these tests because we just went through this with Owen over the summer and will likely be doing it again with him in the near future.  

So they weren't joking about getting going right away.  They want to start the process next week.  We will be BUSY!  Owen checks into Children's at 10am on Tuesday the 14th for his long term monitoring on the epilepsy monitoring floor.  At 10am he will be admitted and hooked up to all the wires and then they will start slowly weaning him off his meds over the course of several days in hopes of bringing a seizure on.  That Tuesday he checks in at 3pm I have an appointment at Froedert for a blood draw for a pregnancy test (HA, that would really be the icing on the cake) they can't move ahead with anything else until they have an official negative pregnancy test.  Then on Wednesday, Jamie will come to the hospital to be with Owen all day as I will be at Froedert for most of the day meeting with doctors, getting a mask molded to my face that will be used for all my radiation treatments and then I will have a hour long cat scan for them to get more imaging of my tumor and then I will walk underground BACK to Children's to be with Owen for the remainder of his stay.  Just crazy.  We were SO worried about Owen's hospital stay and keeping him comfortable and feeling safe and to think we are dealing with MY brain tumor and radiation on top of this just doesn't even seem real but we will get it all done.  

Life is just a little crazy right now.  This morning, Jamie and I were so excited to get the boys to school and back into somewhat of a routine and we were all in the car ready to pull out of the driveway when we realized that we forgot everyone's medicine!  Owen and I BOTH needed our morning medicine and we totally forgot!  We have never EVER forgotten to give Owen his medicine!  Yikes, back into the house we ran to get all the meds into the both of us!  Oops.

I want to send a special thanks to everyone at Jacob and Owen's school!  All their teachers, the other moms, all his Owen's therapists - thank you SO much for loving my boys.  I can't even begin to tell you how much it means to me to have them in such amazing care.  I received texts today from Owen's speech and physical therapists telling me that he had a great therapy session and was all smiles and so happy to be at school.  I can't tell you how much this means to me, to know that my boys are so loved and cared for while I am not with them.  

And another big THANK YOU to Natalie for the amazing dinner!  Your letter made me cry and I LOVED the photo of Danny, he's such a sweetie!  The meal was delicious, I ate the entire salad myself, it was so refreshing!  :)  The boys all loved the noodles and all the little treats too!  You were SO generous. 


I got to Facetime with her and Piper for a bit today, LOVED that!  I hope you had a great day Abi and got lots of snuggles from Piper!  LOVE YOU!

Ending with a cute photo I came across of Owen and me.  
 I LOVE this kid SO much!

Good night everyone!

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