Well I just got back from the oncologist - and the spot is still there and there's now another little spot as well. So the options are again the same - wait and do another scan in 6 weeks, radiate it even though we don't know what it is, try and biopsy even though most likely they won't be able to get the exact spot since it didn't highlight on the CT. So yes, I'm back in limbo and feeling crappy again. I feel like my life has been put back on hold and I just hate it and don't know what to do! I'm sick of my friends not understanding that just because I'm done with chemo that it doesn't mean that I'm still fighting cancer and that I'm still not sure if it's gone! I'm sick of explaining it everyone and getting blank stares and then they forget and ask me again! I'm sick of answering questions for everyone about when I'm going back to work (not you Karen) but everyone else around me. I feel like everyone thinks I'm just being lazy and of course, I'm not! I'm just in friggin' limbo and it sucks! I hate having to explain to everyone that I'm not instantly all better - that I'm still tired, have no strength etc.
As for my decision, they're thinking we should wait another 6 weeks and see what happens. If I have to radiate it, there's a chance of breast cancer down the road. Damnit, I just wish I never got cancer!!! I feel like my life is over and will never be the same again.
I've got another appointment at Dana Farber in a few weeks to discuss my PET results and next steps, so I hope he has something else to say.
Sorry for the rant, it's just not a good day for me.
I'm sorry to hear that your scans aren't coming back normal, and I completely understand how hard it is to have everyone assume that since you're done with treatment, everything must be back to normal when it isn't, and it feels like it may never be again (at least, that's how I feel).
Anyway, I just felt compelled to say, "I get it," and also to suggest that if you haven't yet, you go check out planetcancer.org. When I feel frustrated and angry about my cancer, I find that sometimes even just reading what other people post in the forums can be helpful, because they all get it, and I can almost always find a thread already there that deals with exactly what I'm thinking about.
Anyway, I hope it helps, and I hope whatever is showing up on your scans just goes away before the next one.
Shit Kelly.........I was so hoping it wouldn't be the same again! Wait and see is the absolute pits. PM me if you don't want a call tomorrow night, otherwise I'll look forward to a long natter!
Sending you the biggest hugs across the ocean................xx
So sorry to hear your scan results. I can't imagine how frustrating that is for you...you've done your time with cancer, I know you just want to move on. You will...keep the faith.
Hang in there.
I'm so sorry to hear that the news you got today was more of the "wait and see" and not the good news we all hoped for. I'm pulling for you...I'm sure you are frustrated as all hell. I don't blame you...wish I could help :(
You've summed up exactly how I'm feeling right now. Just because we aren't being treated with drugs at the moment doesn't mean we're back to 100% physical and, more importantly, mental health! Unless you've done chemo you can't understand just what it takes out of you and ABVD is not a pissy regime.
Stay strong and fighting, Kel. We'll speak to you soon. I get my results on Thursday and am worried sick.
Sorry to hear the results babe. the waiting game..man.. completely sucks. I hope you can get more answers at Dana Farber. Don't forget there are people out there who do "get it". Just try and stick with these folks!
Have some good cookie dough and pizza therapy, but don't make yourself sick with it lol. But enjoy it!
I know it's frustrating for you. But hell you're a strong girl, you'll get through this!! And I'm here for ya and we are all here for ya. Just look at all your comments!
Damn it, Kelly, this does just suck, and I wish you had gotten better results.
Well, if you need to mull things over with another caring forum friend, you know how to reach me.
I second sanbandit- treat yourself to something enjoyable tonight and try to take a breather from the worry, at least for a little while.
Stay strong, a lot of hoping that it's just an anomoly or something explainable.
I hear your frustration in your words Kelly...I hope that letting much of your frustration come out through you writing helps you.
Keep up your spunky attitude....it's helped you get through all that's in the past...and will get you through the rest of your journey.
Well that just sucks my butt right off.
Doesn't it just Never end?! even when it does. It never ends simply. ie. I'm like 130ish days out from transplant (if you break the 100 mark you've survived the transplant) and i'm still finding new and exciting side effects that make me want to scream (so I do) and cry (so I do, and eat icecream).
I'm actually in Ann Arbor, MI at my lovely hospital town waiting to do some snazzy lung function tests to see if shortness of breath and a paralyzed half a diaphragm is gonna be one of the fun Permanent chemo souveniors, or one of those several month mini souveniors.
I kinda wanna hit people when they say "So, you're all done with treatment now, eh?" and I say "Well...I find out more after my next PET" and they act all disappointed like I killed their puppy. "Sorry for spoiling your plans, people, but let's do this treatment right and not rush things" I sometimes feel like just flat lying to people and telling them it's been over for months. Maybe I'll get more sympathy money if things start to suck again and treatment continues.
Well, sorry to vent at You. But maybe we've felt some of the same thangs.
Take care, and go break something if you like, just don't oft any puppies.
Morgan the Bronchoscopasaurus
It's a camera in my lung!
So, so sorry about that scan. You will never be the same, but knowing you, you will be much, much better. You're going to get through this,kid.
Just call if you need anything..
Hugs to you, Dave and Ann,
Well shit - this whole thing really sucks. Even if we don't always "get it" ... we know it sucks, so vent away. We're all pulling for you.
I wish I had the words to make it better for you, but we both know they don't exist. I'm not far out, but I already feel like "survivorship" is the harder task -- not the treatment. And it's times likes these that make it so hard -- not knowing.
The only thing I would offer up is that my radiation oncologist told me that he wouldn't even do a PET until 6 months out because "99% of the time," they show activity that isn't important. I know you're seeing excellent doctors at Dana Farber, but I think my only point is that we have to not worry until we know there's something to worry about. Yes, there's a spot there, but have they said what it is? Or why it's there? I know it sucks, but I think you have to wait until you know it's a problem before you can assume it's a problem.
I, too, "get it," so I know what you're feeling -- everyone wants you to be "done," but with cancer, there is no "done." It sucks. We'll deal with it the rest of our lives. And people will continue to not understand that. But if nothing else, all of "us" do, so come to us with your problems -- I've seen lots of comments here from other "survivors," and you can always count on us to know what you're going through.
Be well, try to live for the moment, and I'll be checking in on you.
I want to swear out load for you..
You are such a great person with a positive attitude and a real 'bugger this' attitude that I know you will get over this additional hurdle.
Really feeling your frustration and don't know what to suggest, just make sure its right for you.
I'm glad I had the radiation treatment, although it was not on the chest, but I wanted to beat the little fuckers up good and proper and I will deal with any consequences at a later date. I look to the likes of Wullie who didn't have rads and see what he went through this year - no thanks.
Keep your pecker up..
I am so sorry to hear the news. I wish they could give you more concrete answers. I know this is the hardest thing I have ever had to deal with in my life and I wish I knew the right things to say. Please know I'm hear whenever you need to vent. You are a survivor!!! You will beat this and your life will become normal again. You still have so much to live for. You will be 25 in two weeks. That is still young. I agree "FUCK YOU CANCER"! Keep your head up.
Post a Comment