Blogging has been good to me. As I mention often, your comments and prayers lift me up and help me focus on the good parts of life and the goodness of the human spirit. I can’t believe that so many former strangers are now friends, and so many of you keep me company on days when I hurt so badly I don’t even feel like sitting down with myself. I’m so lucky to have friends from around the world to talk to even in the middle of the night, like tonight, since I’m up and uncomfortable with stomach convulsions (because I dared to eat dinner) and knife-like bone pain from the chemo.
I’ve kept busy throughout this cancer carousel with tests and scans, chemo and recovery, writing, advocacy, yoga, friendship, family time, and focusing on helping my (very) little boys grow up into good kids. But perhaps I’ve kept too busy for my own good. Until I read this post from Punk Rock Mommy, I never considered the fact that I’m now living with a terminal illness.
I have a terminal illness.
OMG, y’all. How could I have missed that? I mean, I know that I have cancer. I had bad days — really bad days — where I didn’t think I’d live this long. I had days where I lay in bed, in pain from the cancer and almost immobile with exhaustion, where I was terribly scared and asked for prayers. I had days where the aftermath of the chemo treatments made me feel like I was dying. Several of them. But what I don’t think I ever considered was that even now, now that I’m feeling better and hopeful about surgery in January and subsequent radiation, that there still is no cure for cancer.
Unless scientists have a major breakthrough — and soon — I will always have cancer. I will have to learn how to live — vibrantly, exuberantly, and well — with a terminal illness. Perhaps you realized that. I guess, somehow, I overlooked it.
Edited to add: Mom and Dad, I really wish you hadn’t read this. Since you did, though, you should go and read what my internet friends have said in response, both in the comments and over at Joanna’s, at Stella’s, and at Canape’s. They are wise, these friends, and I slept better after reading their posts.
Toddler Planet is written by 
Toddler Planet 
In a way, I’m glad that the idea of that has not “sunk in” until now. It is an overwhelming though, but it absolutely can not rule your life. Even if there is not cure, there will always be hope. And Friends. Lots and Lots of Friends.
My disease is frequently described as “incurable” — and indeed, it’s treatable, but not curable. It’s a label I could definitely do without.
But luckily, it’s just a label, and not one of the ways I choose to define myself. (And I know you’re the same way.)
There is so much power in words and labels, isn’t there? Like Christy, I’m glad that the “terminally ill” label hadn’t sunk in for you, and I hope that after you noodle it around a bit, you will reject it. We are all terminally ill in one way or another; that is, there is no end anyone can expect except for death. My prayer for you is that the pain of beating this illness will subside, and you will be restored to your normally vibrant self. You are and will continue to be a survivor, which is a much stronger label.
This is a hard way to look at it. I terribly much wish to think that remission means something important here. I mean, my 5-year old cousin (back in 1979) had Wilm’s Tumor. She’s now 30. It never came back, and at the time, it looked as though she wouldn’t live through childhood. I, too, think you have the right attitude about this fight. Keep thinking positive.
*
I wrote a post “for” you on my blog today. Hope you don’t mind….
(HUGS)
Julie
Using My Words
No. I don’t see it that way. I see it as once the cancer is ‘fixed’ you become a ‘survivor’ of cancer…It’s not in you anymore. It’s gone and you have survived.
I hug you either way.
Whymommy, I read your post and have thought of it all evening, and thought of you. I didn’t comment straightaway only because I want to say the right thing, and your newsflash brings to a head a palpable guilt and unfairness that you have to face this, and other people don’t.
So if this post passes with few comments, don’t take that as a message that people aren’t comfortable with seeing your darker days. That’s not it. We’re – or I’ll say “I”, to not speak for anyone else – just in despair with you, seeking reason where there is none. And that’s the discomfort, in that lack of reason, that unfairness. It’s not me thinking, “Yikes, that’s a downer post…”
I just carry such warmth for you all the time, and to be with you on colder days just makes me feel closer to you, and more akin to you, and with you in my heart.
I felt compelled to comment….We had Francis Collins speak at work today. He is the director of NHGRI (national human genome research institute) and we, (I’m in genetic research) are participating in the Cancer Genome Atlas Project. We will be sequencing out multiple types of cancer and identifying the different mutations within each “type” to hopefully be able to help Dr.s set up more of a specific attack plan to each patient’s diagnosis. One treatment plan does not treat all the same way. The goal is to be able to sequence each cancer patient’s own cancer gene to completely identify the best treatment course. I really believe it is going to change the way cancer is viewed in the future. I’ve been reading for a long time, and am just amazed at your strength and drive. You are always in my thoughts!
Yes. It’s true, of course. But that it took you so long to think of it in just those terms? Suggests that that particular label doesn’t really speak to you.
And to that I say, good.
I can’t come up with anything but to say that I love you, and I believe that you’re going to be with us for a long time.
S–
Life, itself, is terminal.
We all are in the same boat, here, illness or no illness (or unknown illness.) We know it, and push it into some back corner of our minds, hope the terminal part doesn’t come soon, and live like hell.
Live like hell, WhyMommy.
Rose
(((hug)))
We’re all dying, love.
There are just so few of us actually living.
You are such a source of inspiration to so many. I wish I could tell you how many times in a day or night I’ll think of you and say a prayer, or wonder what you’re doing at that moment.
I’m not trying to minimize what you’re feeling or your diagnosis; I hope I don’t come across that way…I’m just trying to tell you that in the living you’ve done, you’ve changed people, you’ve made a difference–and in that kind of living, there is no terminal anything.
I think its a terrible label–terminal illness. People beat cancer and live long lives as survivors, and you will too. And in the hours and days when you can’t believe that, please know you can turn to us to try to help you remember. Hugs and prayers and good wishes coming your way, all day, every day.
you have every right to this sadness…and it is natural, i think, when the permanent nature of anything sad or hard really sets in – when the “i will not be leaving this behind, even once i fight my way through this terrible time” – to grieve, to feel sorrowful for the innocence you will never get back.
we’re not turning away from that. we often just don’t know what to say to honour it, especially – at least for me – in the face of your resolute positive attitude and your hope. ’cause it’s me that hates to be the downer.
but it’s your blog. and down is a part of this, and you get to be whatever you need to be, and we will listen and receive, and care.
…and then, we will remind you, as so many have done here, that you’re doing better at living than so many. and that this is a one-way trip for all…part of its bittersweetness.
As others have commented, it’s perhaps a state of mind. you are a survivor and always will be a survivor. And look at that positively.
We’re all terminal…none of us are guaranteed another day.
Being a cancer survivor myself, I know where you are coming from. True, there is no cure for cancer…but remission is a possiblity…long remissions, hopefully.
When I was diagnosed with cancer, nothing changed…my appointment with death was predetermined…cancer just served as a notice—a reminder that I’d better make the most of the time I have, which is today.
Don’t dwell on that which you have no real control over. Enjoy today and do the next thing. Healthy people die unexpectedly every day.
I should hope that you would always feel comfortable to write whatever you are feeling. It is your normalness, your that-could-be-me, that has captured so many hearts. We root for you and weep for you and, in m,any ways, see ourselves and our children in your life. Your vulnerability is as precious as your strength.
We adore you Whymommy, in darkness and in light.
To be honest, we are all going to die. You just have a better guess at what it will cause your death than others.
Yes, you are sick, today. Yes, even once you beat this cancer, the odds are that it can come back.
But we are ALL going to face the day when our bodies fail us.
The common theme I see in the comments here is “live the life you have right now” Don’t dwell, just LIVE. Widget and Little Bear would expect no less from you.
*hugs*
I think that’s how our brain protects us. You needed to have the chemo, you were busy with that and your babies and your life. Our brain can only take so much at one time.
yup. i definitely understand that one. However, try not to let your mind go so far as it being the thing “[you] will die from, even if not today.” i do not believe that, not at all! It may unfortunately be true for Punk Rock Mommy, but it’s certainly not necessarily true for you, and it’s not for me! We two are lucky enough to have the luxory of still believing that – let’s hang on to it unless absolutely forced to let it go!
And I love that you bought your son a dollhouse. Sounds like he loves it and that’s the only thing that matters!
I wrote you a bloggy letter full of my heart. Go visit and read. Also, glad you got the dollhouse. We had lots of sadness from B. We started him with a family councelor and it helped a lot.
[…] our neighborhood, I realized that I am still lucky. Lucky to be here with my little ones. Lucky to be alive. I’m not sad today. Just wishing that tomorrow were here already and we could get some […]
Whymommy, I wish my dad had spoken of these dark days with me. It would have helped me to understand where he was coming from.
Thank you for sharing yourself, all the parts of yourself. Hoping your terminus is far, far away.
This reminds me of a time when I asked an “Interim” director if he was still “Interim” director. He said, “Aren’t we all Interim?” A little light-hearted but I thought about it and realized that I guess it was true! Hugs.
I am delurking after coming here for months and faithfully reading everyday and praying for you sometimes even in the wee hours of the morning because I am so burdened ,not that you have cancer, but burdened because I want to do more to support you in this journey and I am only a silent observer in your journey.
I do not come here because you have a terminal illness, I come here because God laid you on my heart many months ago and I have been your prayer warrior. For you and your husband and your precious son’s. You see I know God is in the miracle business and he tell’s us to bear each others burdens. I do not have cancer but because you do I come here alot and lift you up in prayer.
God will win your battle for you, God is in control and performs miracles every single day. You are intitled to come here and share your pain and your heart. I love your depth and realness. I want to be right here with you and I will not ever stop lifting you before the throne.
Pesonally I hate nothing except cancer, but cancer doesn’t always win, you are fierce whymommy, keeping fighting, we are here for you.
And all your friends with cancer (myself included) nod their heads in agreement with both what you said (about it always being around) and also what all the wise people in the comments above mine have said about us all being in the process of dying some day eventually. No one ever knows how long they have left, so we need to choose the way we spend those days we do have wisely. Obviously I don’t want to die anytime soon, but I think I would be OK with the things I have accomplished if it should happen. I have to say it is a freeing way of thinking to just do the best you can do and not really plan too far ahead or worry too much about the future. I get where you are coming from with this post. I really do. As always, if there is anything I can do to make things easier for you/help you in any way, please let me know!
You are all beautiful, and your words comfort me. Thank you.