(This very first blog post of mine was written on April 30th of this year. I have a blog only because I needed somewhere to get this in writing. I had to put all this into words right then and there, because this needed to be said. It came straight from my soul.
When VN found my blog shortly after that and asked me to start posting here, I decided the women of VN needed to get to know me before they saw this. It’s raw. It was emotional for me when I was writing it. It’s so very personal… and yet because it IS me, I knew the day would come when I’d need to share it here. That time seems to have come, so here’s my first blog I ever wrote on April 30th, 2010.)
Today I heard the words to the theme song from”Mash” for the first time, and I was struck by how totally it coincides with my views about how my breast cancer will not be allowed to kill me. I’m a 3-time survivor (2002, 2007 and 2009), and I decided early in the game that this insidious disease will NOT be allowed to win.
I told my husband in the early 80′s I’d always had a strong instinctual feeling I’d have breast cancer some day – and that I absolutely would never do chemo. I was right on both counts, which doesn’t surprise me. When my instincts are especially strong, they tend to be more than just “instincts”.
I led a charmed life before cancer. My husband and I had been married for 20 years when he took early retirement in 2001. We still flirted with each other regularly and laughed constantly. Then exactly one year later I turned 50 and we spent a wonderful night dancing to a rock-n-roll band. I’d been feeling a bit off, but not that night. The night of my 50th birthday was wonderful, magical fun.
Just a few months later in October of 2002, I was diagnosed with breast cancer. I wanted a double mastectomy, because my instincts were screaming I’d have cancer in my other breast no matter what the doctors said. They refused to do it. They insisted it was unnecessary when I “only” had DCIS. (That was the protocol at that time – it’s no longer the protocol that’s followed in cases like mine now.)
I was told I could expect to never have breast cancer again. Four and a half years later a worse type of cancer showed up in my other breast. I was lucky in that it hadn’t reached my lymph nodes, but I was angry that this time I had very aggressive Invasive Ductal Carcinoma. I was told they could buy me 10 to 20 years before I’d have to worry about my cancer coming back. Exactly two years later in 2009, I had a local recurrence of the same cancer. This time they’re saying they hope to “maybe” be able to buy me 5 to 10 years.
Considering everything in that paragraph above, I try not to think about certain facts, like:
- In 2002 I was told I’d never have breast cancer again.
- In 2007 they could buy me 10 to 20 cancer-free years.
- Two years later in 2009, they’re hoping for maybe 5 to 10 years.
My instincts tell me I won’t make it to 5 years, and oh boy have I learned to trust my instincts on this. So I did something very smart. After my extensive surgery and before I started radiation last summer, I walked away from my breast cancer support group. I realized breast cancer could no longer be apart of my daily life or my daily thoughts. I’ve decided what will keep me sane is laughter, and I try to laugh as much as possible every day.
I guess I should say I normally laugh as much as possible. Today and this blog post are an exception for two reasons: I just flew to Florida for 2 days and then flew right back home, so I have jet lag. The other reason is that I flew there to say my goodbyes to one friend who’s dying from cancer and another one who’s now Stage IV and fighting desperately to live. Right now I’m not feeling silly, but my innate ability to laugh at life will return soon.
(Added 8-28-2010: Diane passed away in June. I was so very glad I’d been able to say my goodbyes to her; to make her giggle and laugh one more time; to get closure. It helped tremendously.)
To get back to the subject of this blog post – I’ve always told my oncologist I refuse to do chemo, because I’m100% into quality of life over going through hell to try to buy some quantity of life. It’s easy for me to feel this way, unlike it would be for many women, because I have no children or grand-children I feel a need to see grow up. Plus, my immune system is already very faulty and my trustworthy instincts scream at me to absolutely never do chemo.
My oncologist doesn’t trust my instincts like I do, so I asked him to order onco-type testing. It tells them if chemo is effective against your specific cancer. Well, what a (not!) surprise – the test results came back saying I fall into the category of “Chemo doesn’t seem to work.” I was right – my cancer will not be killed off by anything the doctors have to use against it.
And yet because I refuse to let cancer win, I’d decided long ago I’ll be the one in control when the times comes. I’ll go out on MY terms, not cancer’s. In case anyone is wondering, I’m extremely lucky in that my husband, while dreading life without me, isn’t a selfish person. He doesn’t want me to suffer any more than I want that for myself, nor do I want him to go through watching me suffer once I know it’s time.
So on that note, here are the lyrics to the theme song from “Mash”. I think you’ll see why they resonated so strongly with me when I heard it (with the lyrics) for the first time ever today. I hope you’ll understand why I needed to start a blog and get this written down.
Mash Theme Song
(Mike Altman and Johnny Mandel)
Through early morning fog I see
Visions of the things to be,
The pains that are ahead for me,
I realize and I can see….
That suicide is painless,
It brings on many changes
And I can take or leave it if I please.
The game of life is hard to play,
I’m going to lose it anyway,
The loosin’ card I’ll someday lay;
So this is all I have to say….
That suicide is painless,
It brings on many changes
And I can take or leave it if I please.
The only way to win is cheat
And lay it down before I’m beat
And to another give my seat
For that’s the only painless feat.
‘Cause suicide is painless,
It brings on many changes
And I can take or leave it if I please.
And you can do the same thing if you please.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A very important P.S. here at VN: If this original blog post of mine upsets anyone, I would ask them to please deal with those feelings in silent understanding and acceptance. If that’s not possible, then I ask for respect, which is something I would automatically give to others.
It would never occur to me to argue that anyone must believe the same way I do, simply because no-one’s beliefs are superior – or right – or wrong. They’re all merely individual and should be respected as such. I would also very gently point out that my personal views and choices do not affect anyone else’s life or health in any way. I thank you in advance for your acceptance and understanding.
other blog entries from »
I love and respect you, Duffy. Hugs, L. xox
Thank you from the bottom of my heart, Lisa. The pm’s with no acceptance in them have begun to pour in…. But no nasty ones, and for that I’m so appreciative. Right now, right here though – I appreciate you standing by me publicly. I love you back.
I can imagine some of the PMs may be from those who now feel an attachment to you and don’t want to lose you. But their love needs to be big enough to allow you to live your life completely on your terms. For me, I am counting on your invincible spirit to carry you happily forward for a long, long time. There’s many bass yet in MN to be fished for, and many funny blogs and posts yet to be written by you. I’ve never met you, but I believe in you and who you are – no questions asked.
Thanks for sharing this straight from the heart and soul post with us Duffy. It’s obvious from your words that you are a woman who can certainly trust her instincts-you’ve taken charge of your situation instead of letting it have control of your every move. Some things can’t be changed and others can. It seems to me that you have the wisdom to know the difference and are strong enough to act on that knowledge. We all have to walk though life in our own shoes and don’t know how we would move forward if we found ourselves in the shoes of another person.
I admire your fortitude and honesty and support any path you choose to take. We all love you Duffy.
A huge, gushing sigh just came out of me, Jeannie. You’re obviously someone who gets it that we’re not all cookie-cutter humans.
The thing with cancer that just won’t stop trying to kill you, and refuses to follow the prognosis the oncologists keep giving you is this: You either go crazy or you learn to take charge and not let it beat you down.
I love everything you said. I believe you read my words and you “got” them, right down to your soul. Thank you from the bottom of my heart for that.
I love you, Duffy.
Back atcha, Namaste – in spades. I truly love how you make me laugh when that’s what I need.
Duffy, I have a favorite Aunt that thinks like you, we talk all the time, she choses life just like you, no chemo. When we remember it is our bodies, our choices to live with, then let the doctors know it’s not their decision…TRACK
P.S. with much respect and care, hugs. track-in love to you
Awwwwww TRACK – I adore you, thank you for respecting and caring – and truly understanding. Please tell your Aunt I said hi. I bet I’d admire her a lot.
I’m sending love right back to you.
You are an inspiration — your strength, your faith in yourself, your belief in your instincts, your ability to stand up to the medical community and say, “NO!”
I am always confused by people who insist that we accept all the drugs and surgeries and other hideous & maybe ineffective treatments. They are the same people who refuse to allow for the possibility that one could choose to shorten a painful, hopeless situation by saying, “You must not “play G-d.” It’s ok for the doctors to play G-d and extend hopeless, painful, agonizing life, though?
We will all die, dear Duffy. You get to pick the time, place, and method. Don’t let anyone tell you that you’re wrong.
Thank you SO much, KGrandma. A friend of my mother’s just had to put her husband into a nursing home and is feeling so guilty about it. He has colon cancer. They’ve been allowing doctors to treat him with both chemo and radiation for about 6 months, but Red is dying now. He’s SO weak, and he’s definitely not in his right mind. When I found out his oncologist got upset with Dolores for saying “NO” to more chemo, I wanted to go find that man and strangle him.
Oncologists only know one thing, and that’s chemo. And/or radiation, and they can get very upset when you don’t let them do what they were trained to do. At some point, people need to educate themselves and be their own advocates so they can stand up to these people with God complexes.
I realize there are oncologists out there who truly care for their patients and only want the best for them. In fact, I know some women who have those oncologists….. But I also know far too many of them who wear blinders and are intent only on extended their patients’ lives no matter how much hell they may be putting those patients through. And that’s just SO wrong.
Enough of that – I loved everything you said, KGrandma, I absolutely loved it. And I nodded and smiled hugely when I read your last paragraph. Thank you.
Loving you and your mind and thoughts and independence and smartness and braveness and humor and total human=ness makes it so easy to love you!!! You are my hero and I have decided to be just like you when I grow up!! Wait for me!! P.S. — thanks for the Mash words — my sentiments exactly.
Hahahaaaaaaaaa, Maggie. I’ll definitely wait for you to catch up to me, my sweetheart! That cracked me UP. Thank you for everything you said, and you’re very welcome for the words to the MASH theme song. I was astounded when I heard them, given my views and the fact that I’d just gotten home that day from saying goodbye to someone who fought so long and so hard that her oncologist finally had to tell her it was time to go into hospice now.
It’s just amazing the way we’re all so different from each other. Here in this thread, we’re hearing from those of us who are similar – although I believe there are probably many VN’ers who will stay silent because they can’t support me. Even that’s wonderful, since they’ll be giving me the silent respect I asked for from them.
I’ve come to love my VN friends deeply.
Very classy women on this site-silent respect-it’s heartwarming Duffy aka Duffy. Love ya girlfriend.
Isn’t it just, though, winelover aka Jeannie. (Your aka makes mine look kinda boring.)
Love ya back. ~~pretend I was able to insert a heart icon here~~
(Hey, how’d the wedding shower go?)
(Tons of fun-great weather-we were able to eat outside!)
Wow, Duffy! I LOVE that you wrote from your heart!! I love that you have decided to be the one in control. I love that you have decided to no longer allow cancer or the thought of cancer be a part of your daily life or daily thoughts! YES! I’m impressed that you walked away from the ‘support group’ — because you are doing what you need to do for you. I find it awesome that you are listening to your instincts and making your oncologist listen too! You are an inspiration, and your strength in this blows me away. (im out of superlatives–but I love your ‘tude!) Thank you for your honesty and courage…
Well, wow Carolyne – THANK YOU. I’m not always as strong as I may sound, but I try. And when I’m not feeling especially strong, I can quiet my brain down for a while by laughing here and/or on facebook with my family and my friends there. Then when I’m feeling better, I go meditate and get centered again. It’s a constant battle to keep my brain quiet and myself centered and strong, but I think thanks to Reiki and meditation, I’m slowly getting it down to a science.
Thank you for being able to handle my honesty, Carolyne. It means the world to me.
wow DuffyM: I’ve been clicking around here all morning and just saw your post. I have such mixed feelings about it all, having watched my father, my mother, my brother lose the fight to cancer. As well as a sister who chose to leave us, on her own terms. Many many mixed feelings,
However, the most over riding feeling is awe and respect for the courage and instinctual way in which you choose to live your life. On your terms.
I’ll take mixed feelings, Catharine – I’ll take that happily, because I’d expect most people would feel that way. The fact that you then got past those feelings and said what you did in your last paragraph absolutely blew me away. I so appreciate that – you managed to read my full post and in the end you accepted me. I thank you with love.
Sorry, posted twice!
anir
OOPS! Three times!
I betcha the video won’t work! What to do with technologically challenged people? I’m surprised the computergeek patrol hasn’t come over yet and taken away my computer privelages!
anir
Yeah, anir – somehow you post a link to your google search, but then even that won’t work. I found the video on youtube, tho – at least I think it’s the one you were trying to send me to, since it was the only one of Bon Jovi singing “It’s my life” with the words w/ lyrics after it. The correct url is:
http://www.youtube.com/watch?v=9SKFwtgUJHs
And now I’m going to play it and sing along with it at the top of my lungs. Thanks, you sweetheart.
You’re welcome!
Hugs!
anir
Power to you Duffy!
Bon Jovi – It’s my life w/ lyrics
4 min – 4 sept. 2008
Importé par MusicVidLyrics
http://www.youtube.com
anir
Hi Duffy. Thank you for trusting us with your very personal thoughts and decisions. What I know for sure is that I don’t judge you. Only you can know what is right for you. I can only hope that I am as strong with all aspects of my life. I very much respect and admire your strength and courage. You are a very classy lady who is loved a lot. I would count it as a privilege to be one of your VN friends. Take care.
Wishing you all the best.
Claire
Thank you, azul AKA Claire. It definitely took a (close your eyes and hope for the best) scary leap of faith to finally transfer my original blog over here to VN. I’d always known I’d do it some day, I just didn’t know when.
You ARE one of my friends, and I appreciate everything you said to me. Very, very much.
Hugs, Duffy AKA Duffy (because that really is my first name – smile)
Thanks Duffy:). Hugs….
Blessings to you, Duffy. You call your shots and take your chances. I only hope I will able to do the same when I am in the same boat. The last time I checked, no one ever gets the ulimate “never die” card in the Monopoly game of life. Be strong and do everything on your Bucket List. It is worth it. Hugs, Paula in Omaha
Thank you, andifar. I actually do have a bucket list, with only two things on it that are really important to me. I should probably get to work on that, just in case.
I want to do a tandem jump from a plane (probably next summer now) and swim with dolphins. The last is something I was supposed to get to do in 2002 about 6 months before my first diagnosis. We were on a cruise, but due to storms the ship couldn’t put into the port where we’d arranged that excursion. So the plan now is to somehow get over to the Miami area (from Naples) when we’re in Florida next February and do it there.
You’re so right about none of us getting the ultimate “never die” card. It’s kind of scary, though, to have been handed the “I’m so sorry, but we can only hope to buy you 5 to 10 years of life” card when you’re in your 50′s. I think I’m dealing with it pretty well, even though it takes a bit of effort every day. I can only hope all my extended family will manage to deal well with my decision about how I’ll play my card when the time comes.
I do know the minute I’m told cancer is back somewhere bad, I’ll be handing a letter to our lawyer so no investigation is necessary, and I’ll make sure I’ve said everything I need to say to everyone I love. Nothing left undone and nothing left unsaid.
Hugs back to you, Duffy in Illinois
Hi Duffy,
Well, I finally took the plunge and read this post…I think I sort of knew what might be coming and that it might make me cry and so had been putting it off…I only stumbled upon it today and my head was not up to it until now…having said that, here I am…I read, and as I read along I thought to myself, oh, well this isn’t too bad…(love the dots you know) but I did not know, or have any idea, what the lyrics of the MASH theme had in store for me…so I am reading along and then…BAM!! it hits me…my heart jumps…I don’t want to lose my new friend Duffy! you are amazing…I want to keep you here with me…I am also thinking that you are an amazing woman and that I admire you and the choices you have made.
As I think about what I have read and the laughter we have enjoyed and the things we have in common, I also think about the differences between us and I have to worry what you may think about them. You see, I was diagnosed at a young age, I was just 36 and pregnant with our second child. It was very early in the pregnancy and my daughter was 2, almost 3. I had to fight, and at the time I was stage II. I need chemotherapy and radiation, I was triple negative before it had a name. I didn’t ever want my daughter to feel that I had not done all that I could to be there for her or to feel that she was not enough, and that is why she did not have a mother, and so she is an only child…I am thinking that perhaps now this should be a private post, but too late now…
Since that time, I have worked tirelessly as a breast cancer advocate and I am very active with one organization in particular.
I admire you for your choice. We have made very different ones. I am in awe of you. I don’t want to lose you. I have been lucky for almost 16 years now. I want you to be lucky too.
As I right this I realize that I needn’t have worried, the woman that I know as amazing won’t care that I made different choices…she accepts, and anyway this is about you. I apologize.
I am sad that this is a choice that had to be made. I hope it does not come anytime soon.
Love, Kim
Oh Kim…. There’s no right way or wrong way to deal with cancer, that’s where our instincts have to be used. That, our diagnosis, our prognosis, and where we are in our lives. I said very clearly in my post that I had the freedom to follow my instincts about MY cancer (not yours, mine) because I had no children and no grandchildren I needed to see grow up. You were SO young, and you needed to fight to be around for your daughter.
Don’t you see how different that is? Yeah, I do, too – so how and why in the world would you think it would even occur to me to judge you? I’m so extremely happy you’ve been so lucky, Kim. I hope it continues indefinitely, all but infinitely. And I love you for wanting me to be lucky, too – but that’s not in the cards for me. It’s not, and you know that. You know a whole lot about breast cancer, so if you were paying attention to how fast mine has come back each time – way sooner than the prognosis given to me by my oncologist each time…..
Then you KNOW, Kim. And it’s okay. I’ve made my peace with what will be for me, and now you have to do that, too. It’s not helpful for me if you or Lisa or anyone else can’t accept my reality WITH me. I need my friends and family to face this straight on like I have and be strong WITH me. Don’t serve me up any false hopes you have, because that’s what you or anyone else needs my reality to be. That’s nothing but your dreams and wishes, and I’m past that in this fight.
I’m sorry the words to MASH hit you so hard. I would have warned you if I’d known you weren’t expecting it. You keep being an advocate for terrified new cancer patients – they need that so badly. But let my truth be my truth. And my truth is what my instincts say it is. If you want to help me, then accept that and be strong about it.
Just breathe, and then say “It will be whatever it’s going to be. And whatever that is, I know it’ll be okay.” No false words, no delusional rationalities – just my truth. That’s how I need you and everyone else to accept this, okay? Don’t try to fix it up with pretty words you think you need to say. That just makes me want to argue. And we don’t want that. We just want acceptance and love here.
I love you back, Kim.
P.S. the next morning: I typed the above last night while I was half asleep from having taken my bedtime meds. I apologize for how long and rambling it was….. Although I just re-read it and it said a lot of things I meant from the heart.
YOU STAY LUCKY KIM! Breast cancer patients need people like you to give them hope that maybe they can live a long life, too, staying NED forever. That’s just not MY reality. And I really hate it when people feel they have to say anything different to me.
(Oh geeze, I need more coffee so I can wake up and quit rambling, LMAO! Much love to you, Kim – as well as everybody else who replied in this thread.)
Duffy, you can say anything you want to me, you know that. I am aware that, what I wish for is not your reality. I am sorry if what I said gave you that impression. But you know, just because I wish for something does not mean that I cannot accept the reality of what is. I do understand and accept. I do not, and am, not judging. I am saddened, but not enough to opt out of the joy and the freedom that your decision has given you.
You are right. I have learned, and I know a lot, I am learning more, sometimes too much…so I am under no illusions…so life goes on and we all do what we have to do. I am so happy that we can accept each other and love. I did read and I did know that you would understand. But I also knew that I would feel so much better having put my own situation out there for you to chew on, so to speak, for you to see how much different our paths were…even though so much the same…amazing isn’t i?t…and who knows why?…as an advocate it is something I question all the time.
So, now we know. I understand. I accept. I offer no false hope. I only wish. I am comfortable that you also know and I knew that you would understand also. I love you.
Kim (the pink one)
Okay, you said I should respond, so I will even though I clicked on Love and I thought that was enough. Here’s what I want to say:
I HAVE ANOTHER MIGRAINE TODAY, LEAVE ME ALONE!
Oh my, I’m so sorry – I’m cracking up laughing, but I couldn’t resist that. I do have another migraine today, but I’m doing okay with it. Seriously now,this is what I want to say:
I love you back, and you go right ahead and wish. Wishes are always good.
Duffy, now I say no need to respond…I just needed to know you saw it…and I didn’t realize that was you that clicked love (duh) so, um, I will leave you alone now…you have discovered one of my less endearing qualities…I can be a pain in the ass, I am impatient and do not like to wait for things…so…good luck with the head! I took the Malalt today and it did work…unlike yesterday…but I think I am going to head inside, because even though it is lovely out here some inconsiderate jackass has decided to fertilize who knows what and it stinks out here!