I’m trying to be all zen and all about it, and live each day to the fullest so that no matter what I have no regrets, but really?
This sucks.
It sucked that I got cancer once, and it sucks that I might have it again.
And it REALLY sucks that my friends Sarah and Judy and Frances and Stella and Sheri and Susan R and Lorri and Mary Beth and Jenster and Angela and Aimee and Hedgie and Jen and Jen and Andrea and KT and Lisa and Manda and so many, many others have had to fight it too.
It’s just so … useless.
Today, it makes me angry. Mad beyond words, and not at all confident that we are even the last to fight this horrible, horrible disease, or set of diseases that today we call cancer.
It totally sucks. Thinking of you, hoping for you.
it sucks. way more than i can begin to get my tongue and mind around.
hearing you, receiving and abiding.
xo
Well, sh*t! And eff! It just does suck, there’s no way around that. I need to find something non-breakable I can throw.
Oh Susan, I didn’t mean to make that last comment All About Me, sheesh!!! It’s just that when I can’t say my usual (you-know-what), well . . . I don’t know happened. I love you oodles, girl, and prayers, you’ve got ’em. Huge huge *hugs*for you.
I am still not beyond the angry stage yet! When will you find out? Love ya honey!
There’s a phrase that I sometimes say when I’m really frustrated and I REALLY want to just change something that is out of my control. Sometimes saying it out loud a few times makes me feel just a little bit better. It’s like it’s so bad or rebellious even tho it’s just a word that saying it releases a little of the tension. Here’s the clean version.. Mother-effer. I have no idea if it will have the same effect on you.
But I thought I would share.
I am so sorry you’re going through this, Susan. And I know it must be hard to do but I’m glad you tell both sides of it- how you have strength and hope and how much it sucks. I have never been through anything remotely similar but it helps me to understand your experience a little better and I think that’s important.
Yup, nooooooo doubt about it. Totally and completely sucks. But your grace and fighting spirit will get you through, no matter what the outcome.
It totally, completely, without-a-doubt sucks sh!t! You are right to be angry and frustrated. And sad. And zen. And afraid. And regretful. And any other feeling that may sneak in sideways. I feel all of those things for you too! Hugs.
Hey Susan! Having been through this before, you know the hardest part is the waiting………. i had a metastatic reoccurance, in case you didn’t know. it showed up in my clavicle area (nodes) on the opposite side as my original BC, and then in my ovaries- big tumors there. luckily it came back in organs they could surgically remove, so i did go through that surgery. for the nodes we did chemo. Dr. Cristofanilli told me that the soft tissue of the nodes was the easiest to mop up with chemo (it responds best). so after 8 cycles i was NED again. i’ve been doing 3 week cycles of Herceptin ever since. being on chemo the ‘rest of my life’ sucks, but more for emotional reasons. the physical part is difficult, but tolerable compared to the alternative. my point is to give you encouragement….if it is cancer, which you know it probably is, the positive side is that it’s confined to soft tissue areas that respond well to chemo and you’re in the lucky group of us because of that. you can get to NED again. it’s not in the liver, not in the brain. those are the two places that….wellllll…..i know it doesn’t feel like “luck” in any sort of way. but truly you can get through this and get to NED again. better to catch it now than after it digs roots somewhere else. make sure you have them do a Circulating Tumor Cell Count (CTC) before any treatment, especially if you’re like me and never had elevated tumor markers. thinking about you, and in prayer…….
oh ya….and if you knew or heard about Julie MacDonald, she had a new primary, which was leukemia. all that chemo we get can cause this type of thing. i’m no doctor, but i would think that if it was lymphoma you’d have other symptoms (extremely high WBC, and a lot more nodes ‘lighting up’, etc.). let’s hope for a reoccurance. 🙂
I had to laugh out loud at this. I thought I was “hoping” for lymphoma? But now it’s better to “hope” for recurrence and metastasis?
Oh, Aimee (and Judy and Stella and Sarah and all), what a fantastically ridiculous life this is sometimes, the life of a survivor of such a nasty disease called cancer, and indeed one of the nastiest of them all, inflammatory breast cancer.
Where, oh, where is our research?
Call me stubborn (or Cleopatra, Queen of De Nile), but I’m still “hoping” for an infection. Hugs, Susan. And thanks for letting us rage, weep, and celebrate alongside you. Sometimes all at the same time!
Yes. It really sucks. Really, really.
you know. I just had a nap and when I woke up I thought. oh god, what would you do if either you or your loved one got a bad bad disease?
and I think I would fall to pieces, my hon would be so angry, just like you.
its so unfair. its really unfair.
and the most annoying thing for me is that no one who’s not a doctor could help.
its like standing around and watching others help.
and this is making me angry.
even when you want to help you cant.
but you know.
I’m kind of very very proud to know you. Because you knew what you wanted to do when you were 3 years old and you’re still doing it.
it may not be something extraordinary for most people but for me it is.
and thats why its not useless, and no matter what will be the outcome…we all here will and want to help you to get through it.
sending hugs
I imagine I’d be quite pissed off as well. Pissed and sad and hurt and just exhausted by all of it. Thank God none of those emotions will stop your fighting spirit if that’s what you need. I’m still refusing to put the Team WhyMommy badge back up until it is confirmed. As long as there is hope it’s not cancer, I will hope.
Sending every good thought and vibe I can possibly send. Healing ones too.
It truly does suck … BIG TIME. I hope you will get your results quickly … the waiting is very hard … hugs and prayers for you!
The whole thing blows.
I feel the same way for you and the other people in my life fighting cancer right now– whose names I could add to the list—that keeps getting longer every day. What else can anyone say other than what you’ve said—it truly sucks.
Susan, this totally sucks. I am Sarah/Sprucehill’s sister-in-law and saw her tweet today and cannot belive this is happening to both of you. Fight, kick, scream, whatever it takes. Anger doesn’t even begin to describe how we all feel about those we love having to go through this crap.
It does suck. And that’s such a mild term compared to the reality. I hate cancer.
Absolutely, this sucks. I think that every day, every time I see a grandmother with her grandchild and realize that will never be MY children with MY mother, because cancer took her away too early. My mother fought and prayed and lived in the moment; I’m not sure there’s much more you can do. Thank you for trusting us enough to share what you’re going through.
Yeah, it sucks alright. Hugs my friend.
Exactly, Susan, the things to wish for are ludicrous.
Before I became a survivor, I thought survivorship would be easy-peasy. Not so – I don’t know if my already being metastatic makes it worse or if it’s an apples and oranges thing . . . because so far, so good for me (1 year & 4 months of remission).
Maybe it’s just ALL hard, all of it, but these times – Sarah getting her recurrence and all of us waiting with Susan – seem to be HARD x 10.
And it does all effin’ suck and I HATE it!!!
Pissed off is good. Very good. It renders fear powerless and makes wanting to deliver a blow to your attacker worth receiving one. Glad to hear it.
Saying a prayer for you and sending good thoughts. Take care.
Sending you hugs from Toronto, ON, Canada
Susan, you have every right to have the feelings that you do. I agree with everything in your post, except what you said about it being “useless.” Your blog has not stopped helping others understand what it is like to fight cancer as a young mother, even to new followers like myself in the last few days, and you have brought awareness to a breast cancer that EVERYONE needs to know about. Your blog has not stopped helping you share your feelings and allowing others to help carry the heavy burden that you currently feel. And you have already experienced things recently that you would have missed if you weren’t scared right now thinking about a possible reoccurance.
I, with many, are still praying and hoping that your symptoms are not cancer related. If it is cancer, there is every reason to believe that you could be told that it is treatable. And there is no reason to feel that you can’t beat it back, just like you did 3 years ago.
I don’t know exactly how you are feeling right now, but I have personally felt much of what you have gone through, because I was also diagnosed with IBC in 2007. My children were 3 & 7. After six months of chemo I learned at surgery that the chemo did not work, at all. I had almost every poor prognostic factor that said I would be one of those that wouldn’t get a break in fighting this disease, but I did get a break, and unless I become aware of a new symptom, or an upcoming scan next month tells me differently, I continue to represent the positive side of statistics, and you can be there too. I have yet to see any statistics where one side is 100% There is always HOPE. You know that deep down, and when your feelings of anger begin to subside, your fighting attitude will come out in full swing, and you will have an even larger support group to help you through the second round, IF that is what you learn. Cyber hugs from Minnesota. Keep doing what you are doing. You continue to make a difference!
I am praying for you today. Very hard.
Hi Susan, I found your blog a few months ago when I was diagnosed with IBC and I cannot even tell you how much its helped me get through so far (I’m about halfway through my neoadj. chemo bleh!)
Keep on fighting! No matter what it is, this is just another “bump in the road” that you will overcome. I’ll be hoping and praying for you that its not cancer because enough is enough already!!
Okay. Okay. Not useless. And hardly angry at all now. Thanks, guys.
Hey there… Getting angry is okay. I am glad you got out to be with friends. That is the part that is good: you are loved, you have friends that care, and we are all on your side no matter what the biopsy says!
HUGS
No good words because fuck–there are no good words. But I am sending good thoughts. All of us can hold hope for you if it ever gets too heavy for you to hold yourself.
Thinking of you ! Hang in there, you’re in my prayers.we will only hope for goo news.
Love You
Aunt Pat
This does suck. Just found out that I have a fractured rib and need another bone scan. The day we left on vacation. I refuse to let this worry me. Probably just from radiation. Keep checking to see how u are. Sorry u are having to wait like this. Prayers!
Jen