These things are not tied with a pink ribbon (this is what breast cancer has done to me)

October 22nd, 2014 § 38 comments

IMG_9097The past few weeks have been some of the most challenging this year. By the time you read this I will have had my third Navelbine infusion. Unfortunately, we do not have any evidence so far that it is working. Each chemotherapy that I try at this point only has about a 30% chance of working even for a short period of time.

For now, we anxiously wait. But that waiting means that the cancer is progressing. Increased fatigue, pain, nausea, weight loss, shortness of breath and weakness are my companions right now. I do have my team helping me manage these side effects, but there is trial and error involved. Also, at this point an increased cancer load is part of the problem. The only thing that will truly help that is to find a systemic therapy that works, and let it do its thing. For that reason I haven’t been able to post as often as I wanted this week.

I do want to share that the book auction to raise money for my metastatic research fund at Memorial Sloan-Kettering is now live, and it runs through October 24th. This is an exciting event. You can bid by posting a comment including the amount of your bid below the photo of the box you want (you must live in the USA to participate). All proceeds fund research and do NOT go to my personal medical care. Boxes of signed books have been donated by authors and then collected and curated by Erika Robuck. You can click here to go to the Facebook page and then scroll down to see all of the boxes.

Last year the event raised over $4000 and we are on track to blow that out of the water. If you want to donate directly to the research fund but don’t want to participate in the auction, don’t have Facebook, or don’t want to deal with Facebook, please feel free to go here. Donations of any amount are so appreciated.

For today’s October re-post I’ve chosen one of my first pieces, one that readers ask for again and again. I have decided to revise it here, now that my diagnosis has changed. I’m keeping the original post online, though, and you can see that here.

………………………………………….

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

My first diagnosis with breast cancer took its toll on me and I was quite sure I would never, ever be the same.
I had no way to know then that “never, ever the same” would mean something worse, something fateful, a juggernaut.

I told myself “they’re only breasts.”
I said, “I don’t need ovaries, I’m done having children.”
But that obscured the truth.
The truth is that it did matter,
They do matter.
They said my uterus was atrophied.
It almost sounded funny when they said it.

“Who cares? What does that matter?”
It did. It does. It will.
At the time, to get rid of all hormones was thought to give me a better chance at avoiding a recurrence, but there was a price to be paid.
No estrogen mattered more than I ever thought it could.

It felt worse than taking injections to suppress my ovaries, worse than taking Tamoxifen.
Those were easy.
I had no clue what was ahead.

I wore the skirt, I put the makeup on, I walked the walk.
But I did not feel like a woman anymore.
I most certainly do not feel like much of one now.

Make no mistake, I am proud of what this body has done for me.
My three children top the list.
But now I must focus on some of its cells,
now malignant,
throughout this body,
growing at a horrific pace.

My body has now become a personal science experiment.

Sometimes, when things are going well, you could look at me and have no earthly clue.
You see,
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is just a part of what breast cancer can do.
This is just a part of what breast cancer has done to me.

This is part of what can happen
Even with early detection and treatment.
This is what can happen even years later.
This is why people should not prematurely claim victory.

This is why you are not necessarily safe.
This is what breast cancer could do to you.

This is how what some think they have “beaten” or “bid goodbye to” can still
kill.

This is what it will do to me.

Interview on Al Jazeera America’s The Stream

October 12th, 2013 § 13 comments

ImageHi all,

The interview on Al Jazeera America last night was not available to many who wanted to see it (even we don’t receive the channel). Thanks to my brother Mark I now have a link that you can use to watch it and/or download it. I am not sure how long it will be active so if you are reading this a few weeks or months from now I can’t guarantee they will still be active.

I think the show was great, I was so happy to be featured with Gayle Sulik and Dr. Susan Love… we definitely could have continued the coversation for another half hour. Kudos to AJA for giving us the time.

To view it online (*recommended option, must be from a computer not a phone):  https://thinkorbit.box.com/thestream101113
To download the file (it’s big at 360 mb): https://www.sugarsync.com/pf/D823789_62313829_6728743
The photo above is of two of my nieces watching me on TV. Love it!
I welcome your feedback in the comment section. I wish I could have said more about metastatic disease but that wasn’t the true focus of the show.
Hope you all are enjoying your weekend.

 

Breast cancer is (still) not a Facebook game

October 4th, 2013 § 134 comments

IMG_7313Once again Facebook games about breast cancer are making the rounds now that it is October. I posted this last year and got some flack from people who thought anything that “raised awareness” about breast cancer was good and couldn’t understand why I am critical of these messages.

My point is that this isn’t awareness.

There probably isn’t anyone on Facebook who doesn’t know that breast cancer exists. But there certainly is a lot of myth-busting to be done. This is not how to do it. Topics that do need attention include male breast cancer, the underfunding of metastatic research (30% of people with breast cancer will eventually have metastases yet less than 5% of breast cancer funding overall goes to metastatic research), the fact that for many breast cancers 5 years in remission does not mean you’re free from risk of recurrence, not all breast cancer presents with a lump (inflammatory breast cancer)… the list goes on and on.

There’s a lot of work to be done educating. Education is awareness, these Facebook posts are not.

A friend asked me, “What can I do to help? I can’t donate money to your research fund but would like some ideas on things I could do instead.” What a great question. Rather than post these messages on your Facebook page here are a few easy ideas:

1. Make sure you are properly vaccinated from vaccine-preventable illnesses. This includes your family (kids and your parents if applicable), friends, and anyone else you can get involved (nag). Boosters like those for pertussis are very important. Get your annual flu shot. People over the age of 65 and some others at high risk should also talk to doctors about the pneumonia vaccine.

2. If eligible, donate blood and platelets. These products are needed by cancer patients constantly.

3. If eligible, get tested to be a bone marrow donor. Go to BeTheMatch.com to see the requirements. The initial registry just requires a cheek swab. It’s easy as can be.

4. Read blogs/follow tweets by people living with cancer. I think understanding the day to day lives of those of us living with it is a great way to truly become more aware. It’s one of the reasons I spend so much time writing here. I try to bring you the science, the experience, the thoughts of a mother trying to cope with raising a family and managing an terminal diagnosis.

Now on to the Facebook posts… here is a slightly modified version of the post from last year. You can go back to the original if you want to see comments made then.

……………………………

I don’t usually rant, but something has me steaming. Today the following exact message appeared in my Facebook inbox:

So here is the time of year again when we try to raise awareness for breast cancer through a game. It’s very easy and I would like all of you to participate. Two years ago we had to write the color of our underwear on our wall. Men wondered for days at what was going on with random colors on our walls. This year we make references to your love life status. Do not answer to this message just post the corresponding word on your wall AND send this message privately to all the girls in your contact list!!!!!! BLUEBERRY = single; PINEAPPLE = it’s complicated; RASPBERRY = I can’t / don’t want to commit; APPLE= engaged; CHERRY= in a relationship; BANANA=married; AVOCADO= I’m the better half; STRAWBERRY= can’t find Mr. Right; LEMON = want to be single RAISIN = want to get married to my partner. Last time the underwear game was mentioned on tv, let’s see if we get there with this one !!!!!Copy and paste this message into a new one and send to all your girly friends and update your status with your answer. DO NOT RESPOND TO THIS CONVO, just leave and participate.

One version I received yesterday says this:

Hello Ladies, Without replying to this message, put a heart on your wall; no comment, just a heart. Next, post a heart on the wall of the person who sent you this message. Then send this message to your women friends, only women. If anyone asks you why you have so many hearts on your wall, don’t tell them. This is only for women, because this is breast cancer research week. One small act of solidarity between women. PS to type a heart, first type < then 3 It will turn into a heart as soon as you post.

………………………

I’m going to keep my reaction short. I’m hoping writing something down like this will allow people who are as infuriated as I am with these silly requests to have something to react with.

First, I give you permission to ignore this crap. Better yet, write back to the people who have shared it. Let’s do some real awareness here.

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

Let’s do a piece of education right here. The status update says “only send this to your girly friends.” Men get breast cancer too. Men are also the husbands, fathers, sons, brothers, and some of the friends, coworkers, nurses, and doctors who care for and are left grieving for people (men and women) who die of breast cancer. We should not exclude them from ANY discussion of cancer.

Just because it says it’s about breast cancer awareness doesn’t mean you have to agree. Go ahead. Ignore it. Or write back and tell them why you don’t want to be included in these things anymore. Another blogger, Susan Niebur, wrote about her take here. She was an astrophysicist, by the way. She died of metastatic breast cancer.

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the I’ll bet most of my friends won’t share this post attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

And why would awareness be correlated with something being done secretly?

I think that those of us who have had breast cancer have an obligation to speak out if we disagree with these posts. People look to us to see how we react. If we not only read these updates but share them, it does constitute endorsement. It says we agree. It says it’s okay to think of breast cancer awareness this way.

I say: count me out of these Facebook games.
I have stage 4 breast cancer and it is no game to me.

 

Breast cancer is not a Facebook status game

January 17th, 2013 § 106 comments

** please note I updated this post in October 2013. I added the following information:

Once again Facebook games about breast cancer are making the rounds now that it is October. I posted this last year and got some flack from people who thought anything that “raised awareness” about breast cancer was good and couldn’t understand why I am critical of these messages.

My point is that this isn’t awareness.

There probably isn’t anyone on Facebook who doesn’t know that breast cancer exists. But there certainly is a lot of myth-busting to be done. This is not how to do it. Topics that do need attention include male breast cancer, the underfunding of metastatic research (30% of people with breast cancer will eventually have metastases yet less than 5% of breast cancer funding overall goes to metastatic research), the fact that for many breast cancers 5 years in remission does not mean you’re free from risk of recurrence, not all breast cancer presents with a lump so self exams and/or mammograms may not always find  certain types of breast cancer (inflammatory breast cancer)… the list goes on and on.

There’s a lot of work to be done educating. Education is awareness, these Facebook posts are not.

A friend asked me, “What can I do to help? I can’t donate money to your research fund but would like some ideas on things I could do instead.” What a great question. Rather than post these messages on your Facebook page here are a few easy ideas:

1. Make sure you are properly vaccinated from vaccine-preventable illnesses. This includes your family (kids and your parents if applicable), friends, and anyone else you can get involved (nag). Boosters like those for pertussis are very important. Get your annual flu shot. People over the age of 65 and some others at high risk should also talk to doctors about the pneumonia vaccine.

2. If eligible, donate blood and platelets. These products are needed by cancer patients constantly.

3. If eligible, get tested to be a bone marrow donor. Go to BeTheMatch.com to see the requirements. The initial registry just requires a cheek swab. It’s easy as can be.

4. Read blogs/follow tweets by people living with cancer. I think understanding the day to day lives of those of us living with it is a great way to truly become more aware. It’s one of the reasons I spend so much time writing here. I try to bring you the science, the experience, the thoughts of a mother trying to cope with raising a family and managing an terminal diagnosis.

If you want to see the comments on the new post you can go here. The original post appears below:

………………………….

I don’t usually rant, but something has me steaming. Today the following exact message appeared in my Facebook inbox:

So here is the time of year again when we try to raise awareness for breast cancer through a game. It’s very easy and I would like all of you to participate. Two years ago we had to write the color of our underwear on our wall. Men wondered for days at what was going on with random colors on our walls. This year we make references to your love life status. Do not answer to this message just post the corresponding word on your wall AND send this message privately to all the girls in your contact list!!!!!! BLUEBERRY = single; PINEAPPLE = it’s complicated; RASPBERRY = I can’t / don’t want to commit; APPLE= engaged; CHERRY= in a relationship; BANANA=married; AVOCADO= I’m the better half; STRAWBERRY= can’t find Mr. Right; LEMON = want to be single RAISIN = want to get married to my partner. Last time the underwear game was mentioned on tv, let’s see if we get there with this one !!!!!Copy and paste this message into a new one and send to all your girly friends and update your status with your answer. DO NOT RESPOND TO THIS CONVO, just leave and participate.

I’m going to keep my reaction short. I’m hoping writing something down like this will allow people who are as infuriated as I am with these silly requests to have something to react with.

First, I give you permission to ignore this crap. Better yet, write back to the people who have shared it. Let’s do some real awareness here.

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

Let’s do a piece of education right here. The status update says “only send this to your girly friends.” Um, hello… men get breast cancer too. Men are also the husbands, fathers, sons, brothers, and some of the friends, coworkers, nurses, and doctors who care for and are left grieving for people (men and women) who die of breast cancer. We should not exclude them from ANY discussion of cancer.

Just because it says it’s about “breast cancer awareness” doesn’t mean you have to agree. Go ahead. Ignore it. Or write back and tell them why you don’t want to be included in these things anymore. Another blogger, Susan Niebur, wrote about her take here. She was an astrophysicist, by the way. She died of metastatic breast cancer.

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the “I’ll bet most of my friends won’t share this post” attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Education underlies awareness. To even call something a “game” and honestly believe it’s doing anything to help any aspect of this disease is delusional.

I also think that those of us who have had breast cancer have an obligation to speak out if we disagree with these posts. People look to us to see how we react. If we not only read these updates but share them, it does constitute endorsement. It says we agree. It says it’s okay to think of breast cancer awareness this way.

I say: count me out of these Facebook games.

I have stage 4 breast cancer and it is no game to me.

 

These things are not tied with a pink ribbon

January 14th, 2011 § 22 comments

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

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