Dear Advocacy, It’s Not You; It’s Me

At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.

I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.

I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.

Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.

It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”

In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.

I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.

Miss Minnie in charge of the gender reveal!

Would You Love Me If….

Would you love me if I burned dinner?

Would you love me if I forgot to buy toilet paper?

Would you love me if I dented the car?

Would you love me if I left Christmas shopping to the last minute?

Would you love me if I’d rather stay in on a Saturday night?

Would you love me if I forget to put gas in the car?

Would you love me if I hate to fly?

 

 

Would you still love me if I had a miscarriage?

Would you still love me if the doctor said it’s Cancer?

Would you still love me if I had scars from surgery?

Would you still love me if I no longer had breasts?

Would you still love me if I lost my hair?

Would you still love me if I could no longer work?

Would you still love me if medications made me moody?

Would you still love me if I couldn’t go out because of chemo side effects?

Would you still love me if the doctor said it was Metastatic?

Would you still love me if you knew I was going to die?

 

Will you love me…….now?

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

My Son The Doctor

Ever since my son was 7 yrs old he had a love of computers. He discovered YouTube and found that he could watch courses taught by MIT professors. He took notes. He was fascinated. He taught himself programs like C++, Java and Unix. We were always at the library checking out books on Application Development or Web Development. I was happy he found something that he liked and was good at.

image

As my son got older he began to get savvier in his knowledge and his network of friends. He began doing projects for different people and was being generously compensated for it. He was updating websites, creating ‘universe’s’ for games and developing online stores.

His technology experience was also well known at school and was often asked by teachers to help when there was an issue with a computer or smart board. If you asked anyone, they’d tell you HE was the IT Department.

When Adam was 10, he discovered a free local computer magazine. He took it upon himself to contact the publisher and ask if he could write an article for the magazine. The publisher wrote back that he could with my permission. Adam excitedly wrote an excellent article about a program created by MIT designed to get kids interested in programming. I still have about 50 copies of the magazine.

image

Last February, Adam started working for a well known General Practitioner after school. Adam was very impressed with the Dr and took a shine to him.  The Dr was aware of Adam’s strong technical ability and had helped with a few projects the Dr has asked him to help with.

This past September when Adam started his Junior year, he decided that he wanted to pursue Medicine instead of Computer Science. In making this change he added a third Advanced Placement class to his schedule.

image

Today when he was at work he told the Dr that he is going to go Pre Med and asked him for his advice. Adam told me the Dr was very pleased and told him he was welcome to shadow him with seeing patients. He also gave Adam other great advice that Adam plans to pursue.

I’m so overwhelmed. I always knew my son was exceptionally smart but it never occurred to me that he would want to become a doctor some day. Thinking about it brings tears because I can’t say if I’ll be here to see him reach this goal. Right now, I’m just trying to make sure I’m here to see him graduate from High School. I would give anything to see him graduate from medical school but the likelihood is slim. I’m not being negative, I’m being realistic.

image

But how amazing??  My son…the Doctor!!!

image

A Letter to My Son

Dear Son,

You just turned 16.

It seems like I blinked and you went from a curious toddler to a handsome, bright young man with such a bright future within your grasp. I’m so excited for you and can’t wait to see what path you choose for yourself. I’m confident you’ll choose wisely.

There is so much I want to tell you but I know how much you hate ‘mushy’ letters. This will not be one of those. This includes important things to remember for when you choose a partner to share your life with.

You’re probably shaking your head at me because of how things didn’t work out with me and your Father. I may not seem like the best person to be doling out advice but I have a very unique perspective that I didn’t have before.

Obviously, you’ll want someone who loves and respects you. You’ll want someone that you can laugh with and share memories with. Everyone does. You’ll also want someone who drives you a little bit crazy with the particular way they do things. It’s OK. It will remind you of why you fell in love in the first place.

You’ll want someone who shares some of your interests. It’s OK if there are some differences. If you both liked all the same things life would be boring.

Now pay attention because this is important. This is something few are told and even less consider when choosing a partner…ready?

Be very, very certain that if you or your partner ever have a significant health issue that both of you will be committed to each other. That you’ll support each other emotionally because that’s so important. Neither of you can ‘check out’ emotionally because things get scary. Be sure that you’ll both dig your heels in and support one another. Don’t be so selfish that your feelings become more important than her’s regardless of who is ill.

If one of you has a medical issue, there may be days of moodiness or frustration or anger. You’ll both have to be strong enough to not take it personally. Believe me…it will be hard; maybe even harder than the illness itself.  But if you can’t do this, your relationship won’t survive.

You both may have to do difficult things for the other person, like administer shots or learn how to give nutrition thru a feeding tube.

You’ll have to understand that there may be days where one of you may be in pain or nauseated to the point where leaving the house just isn’t an option. Don’t harbor resentment. This isn’t being done “on purpose”.

You or your partner may talk about difficult topics like death or end of life decisions. You both may not want to talk about it but the conversations need to happen. Neither of you can shut down on the other. Have the hard conversations when the opportunities present themselves because if you don’t you’ll wish you had when it’s too late.

I don’t mean to be depressing but these are things I never considered. I always thought it never could happen to me. But as you, know it did. Learn from my life.  Be thankful you have this to learn from.

I pray every night that you will be spared from having any significant illness and I pray whoever you share your life with will always be healthy. That neither of you will have to be a caretaker to the other. I want only the best for you in all things.

So, for now, tuck this letter away in a safe place and when the time comes and you’re considering marriage, pull this back out and read it again. Really. Read it.

Love you to the Moon and back,
Mom
image