We spoke the the neurooncologist and found out the next step. The preliminary pathology results showed that the tumor was aggressive enough to start radiation and chemo therapy. The final pathology results will most likely dictate a more detailed plan, but right now it looks like she will be starting radiation and chemo therapy in about 2 weeks +/- to give her some time to heal from the past two surgeries. The chemo therapy will be called Temodar (I've done minimal research but if all you webbies want to help me out, that would be great). It sounds like she'll be receiving this treatment for 6 weeks, a month off, then another treatment.
This is all so very overwhelming and pretty hard to digest, but we've got several advantages working for us:
Jill is young; going through this at 32 is better than at 62
Jill is recovering from the surgery at a remarkable rate. The stronger she is going into radiation and chemo the better the outcome.
Jill is healthy; organic eating tree huggin non smoking hippy chick
How is this going to change our lives? Long term, hopefully not much. She's going to beat this thing and come out of it stronger than ever. In a year or two from now its going to be an MRI every 6 months or so to make sure that this bastard isn't coming back.
Short term is a more intersting question. We will be making many more trips to Phoenix for treatment and follow up. Jill won't be finishing the Flagstaff Summer Running Series and I won't be competing in the Leadville 100 mountain bike and 100 run (they better give me a refund; Lance Armstrong will be there racing and he would understand)
Jill said that if she gets through this she wants to go to Italy, haven't figured out how/when we'll get there, but it will happen.
Thats all the easy stuff. When thinking about work, it gets slightly more complicated. I need to find out tomorrow how much time off work I'll be able to take and when I can take it. What will happen to my coworkers w/o me? (boy that makes me sound way more important than I really am!) Jill's massage business is more more physical and who knows when she will have the strength to start back up. What will all her clients do while she is gone? During this time can we make it on my salary alone? Will I get my full salary during while I'm gone or will it be a smaller percentage? If we're down in Phoenix for the treatment what about our baby boy Leo (he's such a good dog)?
Ok I'm now too tired to be thinking about this.
If you've read this far, you probably forgot about the picture of the cow by now (rhyme not intended, but I'll still take credit for it). Why the cow? Because the cow is happy. Look at the beautiful green field it's in! Also I'm too tired to go looking for other pictures, found this one from our trip to Switzerland and it made me want to smile.
Yeah this is a lot. This weekend I'll dust off my cancer center social worker hat and see what we can find in the old bag of tricks.
ReplyDeleteMeantime, I asked that a couple of messages be relayed to you about some other small helps. We will coordinate at your convenience. No rush here, of course, You give me a call when you have a moment and the energy to work out the details.
Don't forget to exhale.
love,
jan and jose
http://search.cancer.org/search?client=amcancer&site=amcancer&output=xml_no_dtd&proxystylesheet=amcancer&restrict=cancer&q=Temodar
ReplyDeletehttp://www.cancer.org/docroot/NWS/content/NWS_1_1x_Temodar_Approved.asp
I will do more research with you this weekend or when you are ready. Meantime, I'll see what's in the old bag of tricks. As you are probably already doing, get a note pad and write your questions as they come to mind so you don't forget when you have someone who might help with an answer.
Jan
Rob & Jill- I know it must be awfully difficult for both of you to digest all the information you're receiving right now. I remember this part very well from my mom's experience. I realize that there are no words or actions that can make it feel any better or any easier, but your positivity and perseverence can and will do just that.
ReplyDeleteRob, you are right- in the long term, this isn't going to change your lives much at all. You both have long, long lives ahead of you, and I'm sure multiple trips to Italy and all that great wine to share! In the short AND long term, please know that you have wonderful friends, family, and community that will help you to absorb the pain and will support you however we can.
Victory will not come without effort, and tomorrow will not rise without today. I will be thinking about you both, and have some encouraging stories to share with you whenever you would like. If there's anything else I (we) can do, please let me (us) know. Until then, Ciao, bellos! Arrivederci!
With much love,
Bill
Hey there, my friends. I am sending you all the positivity I have knowing in my heart and my soul that you both will overcome this. Please ask for anything that you need from all of us...we are here to help you both through this, so that we can all look back at this period and curse at this ridiculous thing that decided to take you down a different path.
ReplyDeleteLaura
Wow, what a lot of information! Our prayers continue to be with you for clarity of thinking, continued strength and just the right people around you knowing just the right thing to say to be helpful.
ReplyDeleteI wish I was closer and could ease this time in some way.
I have full confidence in you both. What great news about how strong Jill is and how well she is recovering so far.
Blessings-
Melissa, Blake, Sydney & Hannah
Rob and Jill:
ReplyDeleteWell, I don't know which is better, the knowing or the not knowing. At least now you have an idea of what the plan is. All that I can tell you is what I told my 70 year old sister who recently left the hospital after seventy two hours of detox and depression counseling: take this thing one day at a time. The future seems overwhelming right now because you are dealing with so much on your collective plate. Break it down into smaller pieces. Remember that every journey begins with a first step!
It is one day at a time and be sure to enjoy them. The other stuff seems like a lot to coordinate, but it does all fall in to place - and don't forget that there are all of us out here willing to do whatever, so don't be afraid to ask!!! Our positive energy is coming to you, along with our love and prayers.
ReplyDeleteHi Rob and Jill,
ReplyDeleteWow--that is a lot to digest...I imagine it will all take a lot of time to process through. I remember when Jim and I made the decision that I would stay home with our child(ren). It was so scary to think about cutting our income by HALF!! We probably should have analyzed it more, but really we just kinda took a leap of faith, and I am happy to say...it is possible. You just do different things...or less things. :) We are happy to help with Leo anytime we are around, which is most of the time. I know we can't fix anything, but those are a couple things anyway that will hopefully help ease your minds.
Our continued prayers and positive thoughts to you, for strength and peace especially. I happy you get to head back up the hill.
Much love,
Erika, Jim, Harrison, and Audrey
Hey rob and Jill,
ReplyDeletemy apologies for bad writing technique but I am writing from my phone and thought this info could help. I have a dear friend who has been fighting a brain tumor for six years. He and his wife started a foundation, raised a ton of money for brain tumor research and received a professorship for their foundation. They are an excellent resource and would be a great help to you. Check out: www.headrushevent.org. Check out the links section and go to chris's caring bridge. If you need more info please call me at 530-570-7241.
Keep up the amazing progress Jill!!!
Love,
Anne corcoran-Scofield
My mother-in-law is also on Temador- it took her awhile to get used to it. She takes it as a giant pill- and with her anti-nausea pills feels OK, just tired.
ReplyDeleteShe is a great resource: Barbara Denny barbdenny@hotmail.com and would love to tell you anything & everything!
beth
and our dog would love company- anytime.