thanks I am thinking of you too. God Bless you!Quote:
Originally Posted by TaraF
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thanks I am thinking of you too. God Bless you!Quote:
Originally Posted by TaraF
Horndogg and Tara! I'll keep you in my prayers. Our minister always asks us if there is anyone special that we would like to say a special prayer for during our "Prayers for the People" in church. Then he gives us time to include people we would like to send a special prayer in our thoughts. I prayed for you Tara and I will say a prayer for both of you tonight as you face your treatments tomorrow. God bless!
Tara, thinking of you right now and hoping your getting the answers from Dr. Torres that you need. Not sure why it is, that usually everyone else knows more about our treatment than we do. Dr's seem evasive with answers and even sometimes I get the feeling that they are uncomfortable with direct questions. They use lots of big words that we need to go and look up to even understand, and by the time we have figured that out, they're on to something else.
I always try to remember now, at the beginning of any conversation with my Dr's to say, "Please, can we use layman's terms here". Best of luck on getting the answers you need hun.
thank you for the prayers.Quote:
Originally Posted by avoncallingu
Chemo went well today and I hope Tara has a good day today too.
I had to come down to the commons room and use the computer here. I think I'm confused more now than before on what to do. *sighs* so...I opted out of chemotherapy for now.
I FINALLY was given a looksey at my MRI, the first time in the 4 years I've been coming here (points go to Dr. Torres) he even printed it out with the full MRI results for me to have in hand. Now that's all medical jargon so it means nothing, but the fact he did so means a lot. When viewing the MRI's side by side from July 2013 and July 2014 there is a part or my brain at the right temporal lobe that is plump. That is where the cells are. That's the thing. There is no distinctive mass wrapped up within my brain at the moment but activity within the brain tissue itself. This is signaling activity of progression. But here's the other thing.
Remember I said in 2010 I was told I wasn't compatible with the chemo drug? That's not entirely accurate, what is accurate is that my tumour is not compatible with the drug. Confused yet? Yeah, me too. So all malignant tumours have receptors, and these receptors are what chemotherapy drugs are aimed at, or at least what the Drs hope are going to grab the drugs to kill them in their tracks. My particular tumour doesn't have the receptors that attracts/catches (in laymans terms) the temadol. So by taking the temadol it's kind of a craps shoot, I'm hoping that some of the chemotherapy will be picked up by the tumour all the while it's running through my entire body.
Dr. Torres says he hopes that the chemotherapy would help but of course he can't make any guarantees (no Dr can when it comes to cancer therapy anyways), however, as sick as I was last week is as sick as I would be for the entire course of treatment due to the fact that this is how my body is reacting to the "ping back" from a receptor that just doesn't like the chemotherapy being tossed its way. If the proper gene sequence was there the tumour would act as a sponge and I probably wouldn't have any issues, unfortunately though it's not the case.
He did say I can opt in to chemotherapy at any time if I wanted to, but to me it seems like more of a gamble than I'm willing to make. I'm really confused and it sucks. It really sucks. I can't be laid up and completely dehydrated for weeks on end to try and get through this treatment, a treatment that because my tumour isn't compatible to the drug, I don't even know if there is going to be any end benefit.
I said to my husband the thing that really sucks is that if 5...6....7 years down the road my tumour returns people can say "well you didn't do chemo, see!", but if I did chemo it would end up simply being, "well cancer sucks".
Yeah cancer really sucks. And I hate it with a passion. I'm trying to make the best decisions for myself with what I have, but I can't continue admitting myself to the hospital (been there twice since Thursday) because I'm reacting to a chemotherapy drug in one way or another that I'm not fully compatible with.
It's a crappy situation. So for now I'm continuing with radiation and I have stopped chemo. I will see if there is a way to be on a daily IV of fluids (seems to be where I'm running into a lot of problems) that would allow me to consider chemo. But other than that, I don't think I'd be able to continue it, because they don't deal with IV chemo for brain cancer here.
OMG Tara, honey, please don't doubt yourself. You need to do what's right for you and right now, your body is telling you NO CHEMO. We are all here to support you in your decision. It's the right one. As you said, you can always add the chemo back in, just as you stopped it. It IS a crap shoot according to your DR. and since he's giving you the decision to make, you must do what is right for you. Like you said, there's no way to know whether or not the coarse of chemo prescribed for you will/would even work.
There are so many questions and unfortunately, not a lot of concrete answers when it comes to cancer. We all react different to the chemo concoction we are given, and every concoction is slightly different. I know that your a strong women, and I'm behind you 110% with what you've chosen as your path to walk. I personally think you've made the right decision. Your body is reacting in the worst way possible and like you say, you've been back to the ER twice since Thursday, that's no way to live. I know people that also have been terribly ill from chemo and have opted as you, to not do it, saying that they'd rather live a short time happy and able to do things than perhaps a bit longer and in bed, unable to walk, focus or do anything. For what, the odds aren't great from the sounds of it. They have no clue whether or not the chemo will even work. AND, they have no clue what a strong woman you are. I just know you're going to be typing away at the keyboard, 5 years from now saying, "Boy, I'm sure happy that I opted out of that treatment" and "I hope you all have a great day...including that hollyquaiscer chick :tongue:
So, as far as news goes, I just hope you can tell us by weeks end that they're able to continue giving you IV fluids every day. It truly is a miracle, just to be hydrated and be able to focus. I'm happy that you were able to my your way down to the computer...that's a good thing!
Take care girly, I'm keeping the cheer leading section open for ya!!! :cheer2:
Tara, I'm glad that your doctor is giving you the reins when it comes to whether to use chemo or not. You are so tuned in to your body's messages, that I believe you will know what is the right way to go. Just FYI, my husband went through an infection a couple of years ago where he required 24/7 IV. He received it at home through a nurse with CCAC (Community Care Access Centre) - I know you are in Ontario and you're not living at home during your treatments, but perhaps you could get CCAC care in the place where you are staying. I know that extra care for my MIL through CCAC is available even though she lives in a nursing home. Just a suggestion. I hope your week goes better than last week and Horndogg, I'm glad to hear that your treatment went well!
oh Tara, thank you for explaining exactly why your tumour does not accept the chemo treatment. I had no idea about these receptors and since you are the one suffering through the treatment with little hope of affecting damn Horatio, I believe you made the best choice for your body.
It sure does suck as you say. Options that seem limited at best. But perhaps the radiation will do enough? I will continue to keep you in my thoughts and prayers.
Horndogg I'm really happy to hear that your treatment went well today! Now starts the countdown of how many is left. I do that with my radiation list, after each treatment I scratch it off and count them down until it will be done!
As for my choice to stop chemo, it's a decision I'm happy with, but I have one more option I will pursue tomorrow with the nurse. I will ask if there is any way to receive daily IV prior to taking my chemo that will allow me fluids and an anti nauseant via IV as well. This will give me the double wammy, a means of staying hydrated daily (again my biggest issue at this point) and the anti nauseant drip is AMAZING. You can't beat that stuff. But it would have to be administered daily, prior to my chemotherapy pill if I were to do it and I don't know if that is an option on their end. I don't see why it shouldn't be as you can receive anti nauseant drip via IV while in radiation treatment itself.
THAT would be the only way I would consider trying the chemotherapy one more time. I'm not about throwing the baby out with the bath water, but I'm also not going to torture myself physically (if I could only continue the way I have been). And if they say my proposal isn't an option, at least I know that in good conscience that I've at least thought things through 110% on my end.
To say I'm on an emotional roller coaster right now is an understatement.
Tara, that roller-coaster you said you are on is enough to make anyone nauseated!
I can't add much to what your fan club / supporters have already said: we support any decision you make because you' re making it in possession of all the knowledge you've received from your doctor regarding your tumour and its reaction to the drug you were offered. It's certainly not an easy decision to make, and it's horribly unfair that you have to make it! It's maddening! But like Holly said: we're out here frantically shaking and jiggling our pom-poms, and yelling, "Go Tara! Go Tara!" Just remember and picture that when things feel like they're getting stuffed-up. Don't picture Walks. Pom-poms won't be the only things that'll be shaking and jiggling....! {{{{shudder}}}} Not pretty.:yikes:
I hope you'll be able to have your hydration and anti-nausea IV to facilitate your taking the chemo drug again. I continue to keep you in my evening prayers.....gentle hugs, Sweetheart.
I'm so sorry my friend for all the difficulties you have been going through.
I admire you for the way you have handled yourself, you have been an inspiration for many.
Continued prayer offered on your behalf.
One day at a time Lord,one day at a time.
This made me spit my water at the screen. LOLQuote:
Originally Posted by Lynn49
I really appreciate the support you all have thrown my way because this has been a really difficult time as you can imagine. It's hard enough sometimes to pick whether you want the chocolate cake or the vanilla cake, but it's even harder when faced with whether you want the cancer treatment that is suppose to buy you 7 or 11 years. Well that's how it was put anyways.
Studies are showing that if you undergo radiation only that you have a life expectancy rate of 7 years, whereas those that pick radiation and chemo have a life expectancy rate of 11. Cold hard facts my Dr says. Well, I've come to be at peace with my decision of radiation only regardless of facts. I will live a clean lifestyle going forward, knowing the effects that sugar, flour, etc, plays on the proliferation of cancer cells. I will try to be as positive and as stress free as possible as well, believing that the decision I made is the right one for me. And I have made the choice to not defend my decision to anyone, nor will I argue it to anyone (that's directed at family that feels the need to question).
I get that people might not understand why I wouldn't take "all treatments available to me", but until you are standing in the shoes and dealing with the situation first hand, you really just truly can't understand it all. I just hope people can respect my decision to nix the chemo and go forward with radiation alone. When I felt something on my tongue this morning and opened my mouth to see, I saw the huge scar on my tongue from the chemo tongue I got on Aug 21st from my first incident with the chemo pill. I thought to myself, "If this is how I'm reacting to the chemo, if my body is rejecting it, and this is how it's leaving scars on my tongue, what's it doing to the rest of me?" It just solidified my decision to stop taking a drug that I/my tumour, is not fully compatible with.
I respect and understand your decision. Good luck Tara!
Thank you very much Curt!