Saturday, February 22, 2014

Brain cancer

So my MRI and visit with my brilliant neuro-oncologist this last Friday showed that my brain tumor has grown in the short time that I've been off Temodar (November 18th, 2013 was my last visit with him). I am honestly MAD, not sad (Zev came up with that term, isn't he clever?) and ready to fight this brain cancer and kick it's butt to the curb! Ha. Seriously, I told Dr. Schiff that I have too much to live for and he said "I know" and I trust that he and his wonderful team are on top of this and want me to succeed. I might even invite him to Zachary's gradation from college. He pretty much knows Zachary since the day he was born! Wonder if he'll still be practicing medicine then?

So for those not on Facebook, here's what I wrote recently (I will include the Devotional picture from Stormie Ormatian's devotional in the pictures below).

My devotional for today. How DOES God get it so spot on, EVERY time?!! Haha. So I'm up before my Z men and although I haven't checked Facebook since yesterday (my phone allows me to send a picture and post without logging in), I just wanted to first: THANK you all for your prayers and encouragement and to let you all know that there is going to be NO SELF-PITY or despair or giving up in this household. With God by my side and my sweet family and friends, I am ready for battle (brain cancer messed with the wrong gal!!) That peace that everyone was praying for these past few days WORKS!!!! As we sat in Dr. Schiff's office yesterday (he is so so SO smart but does not show his emotions often, although he did say "hi Zachary" a couple of times and smiled when Zachary couldn't keep still), I think I kept a calm and told Zev that everything was going to be just fine and that I felt a peace that surpasses understanding. God has GOT THIS. He has had "it" since the beginning and I believe His promise that he wants to give us HOPE and a FUTURE. I told Dr. Schiff that I planned to be around to watch Zachary graduate from college, to which he replied "I know." I know that he and his team are trying the very best that they can to help me achieve that goal, and I truly believe that prayer, a positive attitude, mixed with modern medicine, diet, exercise, ALL contribute to fighting this brain cancer. So, for my friends who want to help, here's what you can do, in this order! 1) PRAY. I believe that prayer works. Seriously. Dr. Schiff explained that 1/3 of brain cancer patients who undergo radiation will see dramatic brain tumor shrinkage. Please pray with me that I am one of the blessed 1/3rd. 2) PRAY for my number one caregiver, Zev. I told him that he needs to remain strong and positive and have the attitude of battle and not of fear. Please pray that he is able to be strong for me. I feel strong today, but I know that as I get tired and go through radiation and take this new chemo (PCV) which is considered more toxic than the first chemo I was on (Temodar), that I will start to feel less confident and strong. 3) Pray for Zachary. He was worried when he saw me cry in the doctors office but then was back to his normal self when I smiled and told him that mama would be just fine. This just made me think of the moment when he said "mama...up" as Dr. Schiff was showing us the MRIs from November and the one from Thursday night and Zachary put his left hand on Dr. Schiff's right shoulder as I was leaning in to get a better look. Dr. Schiff said that it was ok and I think I detected a smile :-)) 4) Please pray that this treatment works once and for all to kill this brain tumor already! Yes, although Zev and I are so grateful to have treatment options up our sleeves, this isn't exactly a walk in the park and there aren't that many treatment options for brain cancer. It is a notoriously hard cancer to treat and if this next treatment should not work, it gets "experimental" (think clinical trials). We don't want to get to that point, which is why I am asking everyone to be strong and positive and put on your figurative breastplates and get ready for battle!! I am going to be arming myself with scripture and healthy foods and positivity every single day and I ask you to help me do that. I am glad that I went through 15 months of chemo last year, because I feel that experience helped me learn tons of things. This is not the time for crying on shoulders, because I've already done that and am ready for war. So please, no pity cards. I mean that with all the love in the world, but in order to fight this brain cancer during this next phase, I have to have the right mindset. 5) And lastly, not as important as prayer but just as important for long term outlook: SPREAD THE WORD ON BRAIN CANCER!! You now know someone who has this terrible disease! I am young and fit and for the most part, really happy with my life. I don't have ANY symptoms that are typical of brain cancer, especially of part of my tumor growing back, no lump to feel. I am not the only one like this. Brain cancer is the SECOND leading cause of cancer-related death in children; it is the FIFTH leading cause of cancer-related death in women aged 20-39. Brain cancer is notoriously difficult to treat because of its location: you can cut the tumor out, but then you'd be left with no brain. Not meaning to be funny (well I am sort of I guess :-)) but the only treatment options after surgery are radiation (once only to the brain) and chemo (very hard to cross the blood-brain barrier, hence the difficulty in developing good chemo agents). This is of course the layman's version of the science behind brain cancer, but here's what I know for sure: brain cancer is not talked about like other types of cancer (pink was already taken as a color and I champion the breast cancer fundraising and research too; I just want brain cancer to be talked about as prevalently). So, if you really care about helping me and furthering the cause of brain cancer research: talk about it! Yay! Please learn more about it. The National Brain Tumor Society at is a great start to learn more. Use your connection with me "this girl that I used to _______with in _______ has brain cancer! But she's fighting it and has so much to live for and is trying to spread awareness of it, in order to find a cure." If you feel led, help fund some research. Brain cancer unfortunately does not receive nearly as much funding as other types of cancer (it's that horrible grey color, I'm telling you!!) The National Brain Tumor website helps fund research, as well as my neuro-surgeon, Dr. Q and other groups. May is wear grey in support of brain cancer month (why does the official color for brain cancer have to be grey. I need to speak with someone about that. Maybe grey with pink sparkles or something?!! Haha). So yes, you will see me wear the boring yet important color of grey in May :-) Ok, so there is a gorgeous sunrise and I can hear little man start to stir. "Mama? Mama??" Gets my heart every time! Have a great day friends and thanks for reading! Love, Fiona xo

So there you have it! It's battle time folks and I am my team (Zev is second in command and willingly calls me General Grey with Pink Sparkles or the General/ Genny for short :-)) are getting ready to fight this battle head on! The official color for brain cancer is grey and the awareness month for brain cancer is May (hence the wear grey in May campaign). I love the concept and will wear grey (as much as it's NOT my color), but only if I can jazz it up a bit, like with pink sparkles! A girlfriend even said that grey and pink camouflage goes well together too! Love the ideas :-)

Enjoy the pics and thanks for your prayers :))

Wednesday, February 19, 2014

February Fun :-)

My how time flies when you have a little one! And to think that Zev and I prayed to have twins when I was pregnant! I have a few mother of multiples friends and I take my hat off to them! Wow! This age (22 months) is so much fun though. I loved the baby stage, but people are right when they say that time flies! I can't believe that our beautiful boy will be 2 years old in just a few (short!) months! He is so precious and (spoken like a proud mama), so smart. I'm sure all mamas say that :-)) 

Enjoy the pics of our latest adventures! We are grateful each day for being alive, for The Lord's blessings on our life! Don't waste a day! We aren't :-)

Ps: Here are some of the latest "Zachary-isms":

"Mama broke swing, dadda fixes swing."
"Mama broke sink, dadda fixes sink."
"Library fun."
"MOPS fun."
"Firetrucks fun" (that was an understatement last week when a certain someone scared mama and dadda to bits when he had a febrile seizure and had to be taken to the ER!)
"Dadda car silver, mama car white, dadda truck white."
"Dadda dirt bike broom broom."
"Mama, sit down."
"Mama, eat."
"Coffee good" (this one was fun to explain as we waited in line at CVS on Friday! He drinks steamed milk in an espresso mug....)
"Tool men go potty" (I told Zachary that if he wanted to work with his tools outside, that he needed to be a big boy and go potty.) 

Wish we could freeze this moment in time, but looking forward to the joys of tomorrow :-)

Have a great week!

Fiona xo