I Still Have Work To Do

Five years ago this August, I was told I had 2-3 years left to live. Five years ago I wasn’t ready to die. Today, I’m still not ready, but it’s not up to me; so until that day – I have work to do.

When I look back over these years since cancer invited itself into my life, it’s a tapestry of faces, friendships, events, gatherings, meetings, and experiences that literally takes my breath away. I have a very difficult time reconciling the fact that none of these things would have happened and I never would have met the people I’ve met had it not been for cancer. I didn’t want it then and I sure as shit don’t want it now. But I can’t have one without the other. If there is a God or higher power, he or she has a really twisted sense of humor.

In the world of cancer, especially early stage Breast cancer, doctors tell patients that once 5 years “no evidence of disease” is reached, you’re allowed to exhale. When you have Metastatic disease and you’ve lived 5 years, you’re basically living on borrowed time. I am extremely fortunate that I have had a good response to the treatment I’m currently on, however, my eyes are wide open and I am fully aware that at anytime this could change. I am now racing to beat a clock that’s ticking down to an unknown time that will only be revealed in the moments before the big hand strikes twelve.

I have been a vocal advocate for Metastatic Breast Cancer for damn near all of these 5 years. I’ve shouted on my own. I’ve lent my voice to others when needed. I’ve been part of new projects. I’ve helped launch grassroots activist organizations.

Through all of these things, I’ve met, worked with and learned from the most amazing people. Many of whom have since died. Each person has left a footprint on my heart. One individual in particular not only left a footprint but she also took a chunk of it with her when she left us.

Beth Caldwell is that person.

In the months before Beth died, we spoke frequently about how we needed to keep advocacy and activism at the forefront. We were making plans to meet at the last big conference of the year the San Antonio Breast Cancer Symposium and discuss a plan to keep moving forward. Sadly, that meeting never happened.

As most people did, I respected the hell out of Beth. I still do and always will. More importantly, we were on the same page of the same shitty book when it came to what we felt needed to happen. We needed to shake shit up, make noise, storm the gates and take no prisoners if we wanted people to hear us and help save us. Enough was fucking enough. Lives are at stake – our lives. When she asked me to help get METUP off the ground, I was all in. When I stepped back to pursue other projects, I continued to support Beth & METUP. Beth was a force. Beth roared and people listened. She roared until she couldn’t.

It’s important that Beth’s vision continues. She worked too hard, for all of us, for the ball to get dropped now. I can’t let that happen – I won’t. I know she’d kick my ass if I did and I’m not ashamed to admit I’m a little afraid she’d come back and do it.

That being said, It’s my intention to use this borrowed time to do Beth proud. I will be taking an active leadership role with METUP.  It’s my intention to help grow the organization with active volunteers so we can continue to address the important issues facing Metastatic patients through direct action.

I encourage anyone that is interested in getting involved with METUP or those that want to learn more about what METUP is all about go to METUP

DAMN IT DAWN! WE ONLY WANT YOU TO BE FUNNY!

The following is a Facebook post written by my amazing friend Dawn Lynn Goo. Dawn is a talented comedian and very well known for her brilliant wit and humor. Just like anyone else, Dawn has real feelings and emotions and sometimes between the jokes and the funny posts she drops some serious reality that needs to be heard. This is absolutely one of those times. This is Dawn’s original post. I am also including the link to her post so readers can see the overwhelming outpouring of love and appreciation that was shown to Dawn because of this post. Boy, was it appreciated. Her post was shared 36 times and was shared beyond that. I encourage you to leave a comment on this blog post with your thoughts. I’m sure that Dawn would appreciate what you think as well. Without further adieu…..

“You can’t be sick, you’re fat. You don’t look like your dying. You still have hair. Oh come on, you’ve been dying for years. It can’t be that bad, it’s not like you’re dying tomorrow. At least you have a few years. Stop complaining. Others have it worse. At least you’ve lived your life.”

This is the crap crowding my (Facebook) news feed. Watching my friends hear well meaning people say insensitive things because they lack the knowledge of what they go through.

So, I ask you, are there different degrees of terminal diagnosis? Is one person who manages to live four years into a diagnosis less allowed to be afraid than someone who doesn’t get diagnosed before their cancer has metastasized to their bones, brain, liver, kidneys or another organ?

Are my friends supposed to be less afraid because they managed to have positive results with certain cocktails of drugs, while others have stopped responding?

I wonder if you truly know what it’s like to suddenly feel as if your friends or family have become numb to your plight, and the fears you face on a daily basis.

Has society really become so desensitized that we view cancer patients that have fought for years as lucky, and they should stop voicing their fears? Is the woman of 30 with young children at home, who has stage four metastatic breast cancer more a tragedy then the 50, or even 70 year old woman with the same diagnosis? And are we truly compassionate if we are distinguishing them that way?

I can not speak for the hundreds of my friends on my two FB pages that are dying, because though we all share a similar diagnosis of terminal cancer, each of our bodies, and our fights are individual. Some are at the beginning of their journeys, some are at the end. All of them fighters, each of them warriors, but I can talk of the one thing they each have in common.

I’m not one to sugar coat things, so I’ll just say it. Death. Imagine for a moment, sitting in your oncologists office, and being told that there is no cure for your cancer. That means that despite what you do, how hard you fight, eventually you will either die from the cancer spreading to your organs, or you will die from the treatments, because your body can’t stand the assault of the medications on your system, or like some, your immune system becomes so weak, that an infection will end your life.

You begin the journey of playing Russian roulette, doctors and specialists preparing cocktails of poisons that you pray kill cancer cells before they kill you. You go from having two doctors, to having a slew of specialists, because suddenly your brain, kidneys, liver, or bones come into play. You develop an extensive vocabulary of medical terms, and learn first hand how damaging side effects can be. One day you look down at your medicine cabinet and realize you have more medications for the adverse reactions of the chemo drugs then you do of anything else.

And you get tired. You get tired of feeling as if you have to always be strong for those around you. You get frustrated with people who just can’t understand because they simply don’t get it. If you complain, you feel like you’re letting everyone down. If you, God forbid, entertain the idea of stopping treatment, some will say you’re giving up. Damned if you do, damned if you don’t. And if you’re me, you sometimes feel alone and isolated.

No matter how strong a person is, for me at least, the thought of dying is terrifying. You can try to put it out of your mind, but it’s always there, lurking behind the laughter, popping out late at night when the world is quiet. Some of my cancer friends, like me, are single. Some have children, some don’t. Some have spouses, some have significant others. What they all have in common is that they will die from cancer.

It breaks my heart to see one of my friends feeling defeated because someone has told them they should feel or act a certain way. It makes me angry to see someone post that they think my friends shouldn’t post photos of their surgery scars, or show the ugly side of cancer. Ugly side? Since when does cancer have a pretty side? You must be thinking of those pink ribbons again that have sadly, done very little to help find a cure.

Cancer isn’t pretty. It’s vile, mean, and ugly. It eats away at your body, zaps your strength, and often kills your dignity. It can make you angry, and it steals control over your life.

I understand the importance of not letting it keep you from enjoying your blessings, but you are misguided if you think that cancer isn’t always on our minds. We fear each new scan, because being told a medication is no longer working is heartbreaking. Being told your cancer has spread, is terrifying.

Ask yourself this. What if you went to the bathroom, and when you wiped yourself, you bled because your skin is paper thin and prone to tear? What if your mouth bled and you quivered in pain each morning because putting your dentures in over sores in your mouth that were a result of chemo? What if your skin on your hands was splitting open, and some nights you were in so much pain that there was no comfortable position to get into? What if you everyday you looked at your child and knew you will not see them graduate, or ever hold your future grandchildren? What if you knew the taste of poison or metal in your mouth every time they hooked up your port to run the drugs in, or if you ever had to watch a nurse put on two pair of gloves, and protect herself from the very poisons they were about to infuse into your body, as you stare at the hazardous waste receptacle that everything those drugs came in contact with go into, and suddenly realized that basically they are dumping poisons into your body, well then maybe you’d understand what my friends go through.

Have you ever had a Charlie horse in your face, your inner thighs, between your shoulder blades? I have. Have you ever thrown up blood? I have. Have you ever been so tired and in so much pain that you eye your bottle of pain meds and think, “it would be so easy?” I have.

Nothing pretty or romantic about it. None of us choose to be warriors. If we had a say, we’d certainly not ask to be inspirational as opposed to being cancer free. But we were dealt a hand, and we accept it. We don’t expect you to get it, we only ask that you respect our individual way of handling it. Some of my friends speak out and become advocates for research, some are more quiet. Some share their day to day struggles, and post openly about their pain. All fight in their own way.

It’s wrong to criticize any of my friends for being human. If you don’t agree with what they post, just unfollow, and their posts are not on your news feed, but don’t comment insensitive things just because you think they should behave a certain way.

I have friends on here with terminal cancer, I have friends who have won their battles. I have friends who are planning their end of life care. All warriors, all beautiful people.

I emphasize all the time, be kind. Watch your words, because words can lift a person up, or they can be a weapon with the power to break a person down. Try to understand, that for a lot of us, our pages are a community of support that we simply don’t have anywhere else. You don’t have to agree with what we post, but I think that decency and respect should be a given.

You can’t walk in our shoes, we get that, but please don’t think you have the right to decide our paths. Please stop reporting photos of mastectomy scars as inappropriate, so people’s accounts get suspended, because all you’re doing is keeping a warrior from having support from the people they need.

I have always been honest and open on my page. Some find it redundant, most don’t read my scattered thoughts, that’s ok. It’s cathartic just writing them, just as its cathartic for my friends posting what they do. You can learn a lot about strength from these people.

We are imperfect creatures…yet we’re capable of the most perfect intentions…so be kind. Exercise compassion, even when you don’t understand what the person is going through. Me, I use laughter as a means to make my friends forget for a moment, the thing that rules their lives. I don’t judge a persons choices, or their right to share their thoughts. If I see something I don’t agree with, I simply scroll down. It’s easy.

Isn’t there enough sorrow and heartbreak in the world, that we needn’t add to it by taking offense at something someone posted on line? Is it really necessary to hurt someone just because they think differently or have different beliefs?

I had tears watching one of my friends be attacked because she wanted the right to end her life before being put in hospice. I cried watching one of my friends repeatedly have her account shut down because she posted her photos of her mastectomy scars. And it seems every week I’m in tears because another person has lost their battle, and their account goes silent. We have enough in our lives to deal with, and often, we just want to be heard, to be validated, to know that our struggles mean something.

Now I’m rambling, so I’ll end this rant of mine, and leave you with one last thought, taken from another one of my posts….

Each of us have mountains to climb. The height or difficulty of my mountain, does not lesson the height or difficulty of someone else’s. It’s important that we all remember that, and respect that each of us has struggles, and my pain is no more acute to me, than someone else’s is to them. So I try to practice kindness, understanding, and empathy. There are no bad side effects from that. I really believe, if we were all quicker to listen, slower to speak, and just practiced being kind to one another, we’d all be a little better off.

Dawn Lynn Goo

Dawn’s Original Facebook Post

posted with permission

Patients at Pluta Have a Guardian Angel

It’s very expensive to have cancer. There are scans, monthly labs, Doctor appointments, drugs to fight the cancer and more drugs to help with side effects. It can be very overwhelming and if you’re like most people, it can be financially devastating.

There are some organizations, such as The Pink Fund, that are available to early stage breast cancer patients that offer financial help with non-medical related bills (rent, utilities, etc.). There are very few organizations that offer immediate financial help to Metastatic Breast Cancer patients.

This is often a big problem to women that need child care in order to go to appointments or having to choose between groceries, rent or chemo. I mean, seriously, the basic living necessities will always win, am I right?

Enter Rebecca Timlin-Scalera, founder of The Cancer Couch. In addition to raising money for the treatment of Metastatic Breast Cancer, Rebecca has begun establishing “Angel Funds” in the communities of some of the women that have been fierce advocates and educators of Metastatic Breast Cancer and who have also supported The Cancer Couch Foundation.

A portion of the funds raised from fundraising events in their respective communities will go to the local Metastatic fund.

The local fund is administered by the honoree’s local Cancer Center or Hospital. Metastatic men and women can inquire about receiving immediate help to cover rent, groceries, a utility bill, child care or transportation to a doctor appointment. The money does not need to be paid back. Everyone needs help from time to time. It’s OK to ask for help and with this fund now Metastatic Breast Cancer patients can get financial assistance.

I am very proud and humbled to announce that there is now The Susan Rahn Fund for Metastatic Breast Cancer Patients at The Pluta Cancer Center in Rochester, NY.

On October 28th, Rebecca and I met with Jamie Bishop, Executive Director and Judy Zeeman-Golden, Oncology Social Worker of The Pluta Cancer Center. Pluta, is where I receive my monthly treatment. Rebecca presented Jamie and Judy with a check for $2,000 to establish the this new fund.

Every fundraising event that is held in Rochester for The Cancer Couch Foundation, 10% will go directly into the Susan Rahn Fund at Pluta. Additionally, donations may be made directly to that fund via The Cancer Couch website using this link. Just scroll down until you see my name and picture and click the donation button.

The Susan Rahn Fund

As the holiday season approaches, I ask that you consider making a donation to this fund (if you live in the Rochester or surrounding area), or any of the funds listed on The Cancer Couch site, so that those seeking treatment for Metastatic Breast Cancer can have one less thing to worry. What better way to give thanks for your good health and spread some holiday cheer in the process?

‘Real Friends’ VS. ‘Hollywood Friends’

Now that I had my diagnosis there were two tasks at hand: Telling family and friends and finding an Oncologist I trusted. Believe it or not the first seemed the most daunting.

It’s times like this that I realized just how much I hated social media. It’s so easy to get caught up in positing every little detail of your life on Facebook but the problem with that is your friends ACTUALLY READ what you post and want updates on things like Dr. appointments and such. I had made that mistake in posting about some of my tests and now people were asking if there were any updates. Uh yeah, there is an update alright. Exactly how does one post that they just received a terminal diagnosis?? “Hey Friends, thanks for all those prayers and good wishes turns out I have Stage 4 breast cancer! Woop!” To me it was like posting about a death and it turned my stomach. Yet it had to be done. The alternative was to call or reach out to everyone individually and that seemed even more horrific to me. I did not want to relive it all over and over.

After discussing with my husband we decided that one big post would suffice and in that post I asked for everyone’s understanding while we digest everything. What happened after was something I did not expect.

All of a sudden everyone was my BFF – even acquaintances. I was getting gifts sent to me, flowers, cards and most irritating of all was the requests of people who wanted to visit me. I had more Pink things than I ever had in my life. In an instant I felt like a science project on display. Everyone wanted to hang with the girl that was going to die. It was overwhelming. Most everyone had good intentions but as most things are it was all short lived. I found out quickly who were my real friends and who were my ‘Hollywood’ friends.

Real friends are those that still reach out to you after radiation and after surgery to just check in and see how you are or just to say ‘Hi’. THOSE are the friends you can count on. “Hollywood” friends are those that want to be able to say they know you and say, “I gave her a pink breast cancer bracelet” and “I gave her those pink earrings” all of which supposedly have some proceeds that go to Breast Cancer. The Hollywood friends end up forgetting about you after the ‘novelty’ wears off. They don’t call to check on you and most often you never hear from them again.

I have a small circle of REAL friends that I can count on one hand and that’s fine by me.