Cheetos, Freezer Pops -- and Brain Tumors
I tried drowning my sorrows in food tonight. I sampled an array of my former favorites, including cheetos, freezer pops, girl scout cookies, pepperoni pizza, and even a Krispy Kreme chocolate-covered, creme-filled donut. Unfortunately, my long-held enthusiasm for food eludes me, like so many other passions that have been lost to lack of energy and fierceness of battle. Anyway, I'm sure you didn't check in to hear me confess my food-related sins. You want to know about the very thing that I am trying desperately to forget: my appointment with the brain surgeon.
For starters, I can't call it "the brain thing" any more. The neurosurgeon says that it definitely is a bonafide brain tumor. And it has friends - at least four more (smaller) tumors in my brain. He went on to say while it is operable, he would not recommend a craniotomy because of my full-blown, metastatic, advanced cancer. So what are my options? The first one is whole-head radiation. The advantage to this option is that it would target all of the brains mets at one time. The disadvantage? It can cause permanent memory loss and cognitive impairment. Of course, he cheerfully informed us, this is usually delayed and most patients with advanced disease such as mine don't live long enough for this to become a problem.
The more likely option is some variety of radiosurgery (cyberknife, gamma knife, etc.) I could have the biggest one radiated now and watch the smaller ones with quarterly scans. The disadvantage? Sarcomas are notoriously radiation-resistant, so it simply might not work. Still, this could be repeated with other ones that grow large enough to be problematic, and the side effects are minimal.
In the meantime, I can continue the adriamycin chemo if I choose to do so. This means that I need to make a decision by Friday, because I am due for another round next week.
So, there it is. More tumors. Big decisions. Eventually, I'll have to harness my coherent adult mind and make some hard choices. Right now, I feel a little hungry.
Ice cream, anyone?
:-) Sharon
For starters, I can't call it "the brain thing" any more. The neurosurgeon says that it definitely is a bonafide brain tumor. And it has friends - at least four more (smaller) tumors in my brain. He went on to say while it is operable, he would not recommend a craniotomy because of my full-blown, metastatic, advanced cancer. So what are my options? The first one is whole-head radiation. The advantage to this option is that it would target all of the brains mets at one time. The disadvantage? It can cause permanent memory loss and cognitive impairment. Of course, he cheerfully informed us, this is usually delayed and most patients with advanced disease such as mine don't live long enough for this to become a problem.
The more likely option is some variety of radiosurgery (cyberknife, gamma knife, etc.) I could have the biggest one radiated now and watch the smaller ones with quarterly scans. The disadvantage? Sarcomas are notoriously radiation-resistant, so it simply might not work. Still, this could be repeated with other ones that grow large enough to be problematic, and the side effects are minimal.
In the meantime, I can continue the adriamycin chemo if I choose to do so. This means that I need to make a decision by Friday, because I am due for another round next week.
So, there it is. More tumors. Big decisions. Eventually, I'll have to harness my coherent adult mind and make some hard choices. Right now, I feel a little hungry.
Ice cream, anyone?
:-) Sharon
posted by Sharon | 9:28 PM
19 Comments:
Sharon,
Good grief...what to say....There is really nothing that I can type that will change the news that you received today. Right now, you are probably numb. I slumped a bit further in my chair as I read your update. These fights are nothing new to you, unfortunately...& I know that you will continue to fight. I just wish that you could get a reprieve of some sort to regain your strength.
Decisions, decisions....I will be thinking of you as you make them (which route to take in treating the tumors and also with the chemo) Just know that you are not alone....You have many people reaching out to be with you in spirit & strength. If there is ANYTHING that we out here in cyberland can do...please let us know.
Again, my prayers are with you.
Sharla
P.S. - Girl Scout cookies? Nothing better...stick some Thin Mints in the freezer for me!
Forgive me if I'm being naive but I know your mind is swirling right now. I'm sure you've thought of these questions, but I just wanted to help you cover any angle you might not have thought of.
1.) Radiosurgery - if done how long before they know if it's working? If no change by a certain time, can they advance to whole-head radiation? Risk of treatment not working vs urgency of time lost if you go with less agressive method.
2.) Would starting chemo at the same time change the results? Meaning help or hinder? If your immune system is compromised does it speed the tumors growth? Could you zap the tumors first and put the chemo off for a few days or is the chemo schedule critical?
3.) Which is the more urgent battle at this moment?
I will be thinking of you and praying for you to have clarity in your heart.
Love,
Judy
I'll join you! Pass the carton, girlfriend! :o) (((HUGS)))
Dearest Sharon,
I am praying for you as you make some tough decisions. We all know that you want to be with your family and give them all of yourself that you can. I pray that you will be able to choose the path that will give you the most peace and time with your family. My warmest thoughts and best wishes to you and hopes for a healthier tomorrow. Please take good care of yourself...and pass some of those goodies my way, will ya? ;)
Dearest Sharon -- You were on my mind all of yesterday. Right now, I'll set my sights on praying that whatever choices you make in your upcoming treatment will be effective and that lighter, brighter days await you.
You're in my thoughts every day.
Lorraine
Dear Sharon,
The last thing I want to do is add confusion to the confused state you must already be in. I belong to the medical community and as you may very well know physicians practice evidence based medicine, so I did a quick review of the literature out there. I guess a third option would be to combine WBRT with SRT, and although there seems to be no difference in survival outcomes (from what I read)there may be a benefit in controlling local recurrence. Here is the link for this randomized clinical trial that was published in JAMA.
http://jama.ama-assn.org/cgi/content/full/295/21/2483
There may be more information if I had more time to research it I would, but you may want to research your options as well, stick with higher levels of evidence such as randomized clinical trials, followed by cohort studies.
Best of luck and I will be praying that you and your doctors may find the best treatment option for you.
All the best,
Karen
Sharon
I am sending you best wishes and prayers. Reading your update last night, I thought of you and your family and just wished my prayers would help you gain some relief. I will not give up though - I'll keep trying. You certainly have never given up and I admire the strength you have. Take a deep breath and know we are all here sending you best wishes.
My Best Always,
Jodi
Sharon,
I just want you to know that I am always praying for you! You are such a wonderful person! I know that you have so many people that love you and care for you, including me! I know you don't know me and I don't know you that well, but I do know that you are an inspiration to me and so many other people. I hope that God helps you make a good decision!
I will be praying like always for you and your hard hard decisions that you have to make.
Love always
Candice
Sharon - You are beautiful. Just as you are. My father had cancer that had spread to his brain and spinal fluid. A year ago, he elected to take 19 consecutive full head radiation treatments and it knocked back the cancer to the point that he is still with us today. Tumors gone. Spinal fluid is clear. No more fluid around or brain swelling. He is cognitive and he has his memory. He lost his hair, which they said would not grow back, but blessed be, his hair has grown back and it's not gray but black like in his youth. Several external tumors on the outside of his head also shriveled and fell off. They said the treatment would not likely extend his life, but I truly believe it has. That and prayer.
You have so many people praying for you. I am praying for you many time every day. I believe in the power of prayer because I have seen first hand what it can do. If you want to live, then you should never throw in the towel. You should fight like you are going to see all of your grandchildren grown. The will to survive is all important, and I believe you have it. The doctors that gave my dad such bad news a year ago are mystified that he is still here and even apologized. You just have got to keep asking..."So what else do you have for me?"
Getting proper nutrition and eating right even though you might not feel like it is key. So is drinking plenty of fluids. If you become bed ridden at any point, insist immediately on an alternating pressure air BED - not just the mattress topper. They'll fight you on it, but medicare pays for it. Bedsores are the bane of people who are fighting for their lifes because they become infected and toxic.
So sorry that I wrote a novel. I am sympathetic but more than anything I will put on my armor and adopt a warrior attitude to fight this thing with you.
Much love from someone you don't even know.
Roxanne
Hi Sharon - dropping by to send you many blessings,prayers and good thoughts. Found this Inuit Indian prayer and thought I would share it with you.
Prayer At Time Of Adversity
An Inuit Indian Prayer
I think over again my small adventures
.
My fears,
Those small ones that seemed so big,
For all the vital things
I had to get and reach.
And yet there is only one great thing,
The only thing,
To live to see the great day that dawns
And the light that fills the world.
Sharon, YOU are a light to so many in this world!
As Always,
Abby
P.S. Girl Scout cookies must be the "thing" that brings true comfort as troubled waters sometimes flow by us - I finished off 2 boxes of the carmel delights last night!
Sharon,
I love you sosososo much. I'd eat a box of Samoas with you anytime...if only they came in ice cream form as well.
Keeping you in my thoughts,
Dana.
It's me once again just to share with you a poem (because they're your favorite!)
Dumb is not knowing, ditzy is having the courage to ask! The best memories are the ones that you can't explain...you just had to be there. Sometimes there are no next times, no time outs, no 2nd chances...sometimes it's now or never! DON"T TAKE LIFE SO SERIOUSLY ITS NOT LIKE YOUR GETTING OUT ALIVE * As long as we have memories yesterday remains, as long as we have hope tomorrow awaits, as long as we have love today is beautiful.
It's one of my favorites.
Keeping you in my thoughts,
Dana.
I don't know you Sharon, and just stumbled upon your blog. My mother's name is Sharon, so I feel compelled to write:
I will begin a prayer for you, for every day that you've had cancer, and every day you have left. Your blog is beautiful and should be published... it sold me, it could sell anyone. Some of the most raw writing, and pure form - thank you for sharing. God bless you,
Jackie
I've been following your blog and thought I would finally leave a comment. You are a remarkable woman! Your strength, your humor, your insight through all of this has truly been a source of inspiration. It is a rare individual who can face such circumstances and retain so admirable an attitude. My prayers are with you and your family.
Dear Sharon-
I've been thinking of you and sending you good thoughts for the last few days. You know I think you are just an amazing woman. What can I do for you? I know I am far away...but you know that I am here if you need anything.
xoxo Mila
Fist of all, Sharon, speaking of ice cream....you NEED to get the Limited Edition Girl Scout Cookie Ice Cream. You get to satisfy 2 cravings at once!
I know this is all hitting you at once. I also know just from reading your blog that you are one strong, intelligent woman. Let yourself feel all the emotions you need to and then you'll feel strong enough to look at the options in front of you and make the decision that is best for you.
I'm sending you thoughts and prayers, because just like ice cream, you can NEVER have too much!
rosebud
I 'll join in on the Girl Scout cookies and cookie dough ice cream.You are always in my prayers!
Hey Sharon:
Praying for you and so admire your courage. You write so beautifully. It's truly inspiring. God has a plan for you. Give your sorrow to Him when you feel you cannot take anymore. This is where you will find true peace. He asks us to trust HIM; not the doctors or even your husband or other family members and friends. He is perfect and will never disappoint you. Please try to remember that when you feel things and/or people are letting you down. God Bless You and keep the faith.
Love,
An admirer.
Honestly, Sharon? With choices like that, girl scout cookies, Cheetos, and Krispy Kreme sound like a rational response to me!
I will take whatever really chocolate ice cream you've got and eat it with you -- it's that time of the month!
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