First, I must say I found this week I've been VERY emotional. I've been shedding lots of tears (mostly about things I am grateful for). It's hard to explain how I'm thankful for everyone from the people that send me a note/email/card to the people I saw in the medical center that saw my brain surgery news and asked if I was the one that was 'the star' about the surgery, to my doctors and their staff and all that they have done for me and my family, to my friends and co-workers, to my family and friends who have remained by our side through all of this, and of course, even people I don't know ... THANK YOU!!!!! I think I tend to tell everyone thank you but it just doesn't always happen.
So... where do I begin? I will start with what has been going on because A LOT has happened (and changes are constant). I found out from my last MRI that I had 4 tumors they were watching (there are more than the 4 but those are the ones that they are concentrating on) - 2 had decreased in size and 2 had increased in size. As of last week, Kurt and I met with my oncologist who then spoke with radiation oncologist and he said that there were two tumors they were going to radiate but that because my brain is SO swollen around them, they would have to target the areas with less radiation and it was a 50/50 shot that it would work for me (I had issues and had to stop the last time I had radiation - it was doing more harm than good for the areas). So, I had my mask fitted last week and they were supposed to call me this week with my schedule to start radiation - they planned on doing 10 smaller sessions on those two tumors.
Well... forward to Monday - Kurt calls me at work and asks me to call the neurosurgeon's office as they had called to see if we could schedule an appointment on Tuesday to review my MRI results. So, we met with them before my oncology appointment on Tuesday morning (12/11). The neurosurgeon reviewed my MRI with the radiation oncologist and after discussion with the neurosurgeon, it sounded like they thought I would be better off to have a craniotomy on the original tumor area (the area where I had my first surgery on the left side) and then an additional brain port surgery later to help relieve the swelling and take the tumors out. So, we scheduled my surgery for next Wednesday (12/19/2012) for the left side craniotomy with hopes that it will relieve some of the brain swelling and I will eventually be able to decrease the meds that I am currently on. It will take approximately 6-8 weeks to 'heal' and then we will discuss the next surgery... the brain port surgery. I will have Kurt update my blog after the surgery.
Kurt and I then went to my oncology appointment on Tuesday morning. The oncologist did not know the latest developments about my upcoming surgeries. She seemed to think this was a good option. And, I will continue after surgery with the chemo drugs that I currently take. At one of the last appointments that I saw the oncologist, she indicated that I should start 'squatting' as I have had issues with leg muscles from both meds and the hip/femur surgery. Now that I appear to be healing well from the surgery on my hip/femur, she suggests doing squats as the meds I am on deteriorate your muscle mass. It appears that I am getting around better than before - even though I am far from normal in this area!
I must say that I have a different perspective on life now! I've learned of SO many people I know who are fighting the battle of 'cancer' or lost their battle; it stinks! But honestly, I try to remain positive and optimistic about life because none of us know when our last day will be here. Kurt and I have discussed forming a non-profit business to try to raise funds to help people going through not only for cancer. We are in the beginning process of this and I will update as we start the process more. We do have our financial person on board, we need to get a name and then start our plans. We do have some ideas but still need to do more (probably after the holidays)! We are always up for suggestions/ideas, so please feel free to contact us at our email of ballz49866@gmail.com. People have been SO generous to us that we want 'to pay it forward' and help others.
Last (for now) as this is turning into a book... I must say how grateful I am to my family/close friends. They tend to see the worst in me (especially Kurt - SORRY KURT)!!!! My cousin, Laurie, says it best that while she knows that I am sick, she doesn't look at me like I am sick. I want to put that this is what I've been crying about the most lately - that my family/friends will not know how much they all mean to me if something happens. I try to not think about the end as I have a lot of fight in me and when I was originally told I had 6-9 months to live (this was in 2011), I thought "I will do ANYTHING to fight to live". Sometimes its hard as I have a 12 year old son and a 9 year old daughter who handle all of this very differently. Ashley wants very much to be a part of everything medically and she is such a great caretaker. While I think Nathan understands, he just doesn't want to have any part in it - I think he knows what is going on deep down inside but he doesn't dwell on it. I hope they both know how much I love them and I'm grateful to have them in my life (I'm the lucky one to be a mom to such wonderful children). I got a beautiful letter from Nathan today saying how I've been a positive influence in his life - of course, it made me tear up!
And, then of course, there is Kurt. I don't know how I would handle all of this from his side - I can't imagine ... I have the most amazing parents, brother, nieces and nephew, inlaws, grandmas, aunts and uncles, cousins! I'm grateful to the team of doctors / staff who I can truly see are looking out for what is in my best interest!
Sorry for the 'book' and THANK YOU TO ALL WHO CONTINUE TO BELIEVE WITH ME!!!!
Love you all!
Jodi
Thank you Jodi for your inspiration and courage and most of all your humongous heart. How can we not keep Believing with you! And now you are paying it forward, all I can say is WOW!
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