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

Valentines Day Really Is About Love

Today is Valentine’s Day. A day where romance is supposed to fill the air.

There will be flowers delivered, gifts of chocolate, and sparkly things are given. Couples going out to dinner and children having parties in their classrooms. Some people may even remember this day for years to come because of special memories.

I am one of those people, but not for any of the obvious reasons anyone would assume.

On a rainy Valentine’s Day 19 years ago, I had an ultrasound and was told that I would be having a baby boy in July. I was 4 months pregnant, and I was going to have a BOY!! I was so happy. The little peanut who was now big enough to put me in maternity clothes was my SON! Ironically, a few days prior, I felt the first movements that felt as if I swallowed half a dozen butterflies. “Mommy loves you, little guy!” I kept saying that over and over to him. I said it while they finished the ultrasound, in my appointment with my Doc and in the car.

He needed a name. Immediately.

I couldn’t keep calling him “little guy,” “little man,” “buddy.” He needed a proper name. I had picked out names for girls and a few for boys, but none of them seemed quite right anymore.

His name had to be perfect. Perfect for him. It needed to be a strong name. A name all his own. A name that couldn’t be shortened without his permission the way some names can like Christophers can be shortened to Chris or Matthews can be shortened to Matt.

And then, it hit me, his name. I knew his name. My son’s name would be Adam.

Just like that, even before I held him in my arms, I was in love.  A deep, unconditional, unbreakable, unshakable, crazy love that only a mother has for her child.

So Adam, when you read this one day, I want you to know that all those Valentine’s Day cards that I have given you over the years – they have/had a very significant meaning for me. It was the day that you became my son instead of just being ‘the baby.’ You have always been my special Valentine not only on February 14th but every single day of every single year.

 

 

 

 

“I’ll love you forever, I’ll like you for always, as long as I’m living

my baby you’ll be.”  ~ Robert Munsch

 

 

 

 

(Originally posted: February 14, 2018 – Updated: February 14, 2020)

 

Proudest Moment Number 6,535 (and counting!)

Last week was a very big week.

It was a big week for me but more importantly, it was a very big week for Adam.  Adam graduated with honors from a school he has attended since the 6th grade: Bishop Kearney.

I don’t mean to take anything away from Adam. I only mention that it was a big week for me because when I was diagnosed back in 2013 no one was sure if I would be alive to see this day. This day was the only goal I had set for myself (and I made it my medical teams goal too). Regardless of what condition I was in, I WAS going to see my son walk the stage and get his diploma. Last week, not only did I accomplish that but I’m doing OK right now. Better than I had envisioned and I’m so blessed. (That reminds me, there will be an update on the Brain MRI I had at the end of May – stay tuned for another post).

Moving on to a more uplifting topic…… OMG ADAM GRADUATED!!!

The Thursday of Graduation Week (June 8th), there was a Baccalaureate Mass at the neighboring Catholic Church. Bishop Matano was on hand to officiate the Mass. The Graduates entered church as a group and then sat with their families, giving a white carnation to their Mothers (ME!). I am proud to say that Adam had so many family members there that we not only filled the reserved pew but we took over the pew in front of us as well! In addition to Adam’s Grandparents, my Mother and Father In-law, Pat & Bill, Sister In-law, Kim and Niece Leah also came.

On Friday (June 9th), Adam had almost a full day of rehearsal for Graduation. As National Honor Society President, Adam was to deliver a speech. He was instructed to arrive before the other students so he could practice on the stage. We were like two ships passing in the night that day. I had an early morning Dr appointment so I didn’t see Adam before he left. I came home to find an envelope that looked like it was from School. When I opened the envelope and realized that it was a handwritten letter from Adam, the tears began flowing. (I made a mental note to ground him when he got home for not warning me this was coming so I could adequately prepare to read it).  This is what he wrote:

Mom,

How can you thank someone who’s given you everything you have?

The person I am today is the result of everything you’ve done and all of the sacrifices you have made to get me here. Next year, I will be attending one of the highest rated Universities in the entire country and when people tell me that my “hard work is paying off”, I do agree with them, but it’s not even close to half of the full truth.

You’ve done things for me that I would have dreamed impossible if I didn’t know better, for sending me to a private school for just about my entire life, to sending me on a week-and-a-half long vacation to Italy. Now, I am preparing to similarly do the impossible in becoming a doctor. If I’ve learned anything from you, it’s that I can do it, no matter how much I say otherwise.

In a few days I will walk across the stage in a packed auditorium for the first time. Four years later I will do it again, in a much larger room. Eight years from now, the room will be smaller, but the applause will be louder. I said that you taught me I can do anything – but the one thing I cannot do is thank you enough for setting me up for success.

With All My Love,
Adam

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My Special Letter

I am not even lying when I say that it took me damn near 30 minutes to get through the entire letter because of all the tears and ugly crying. (His handwriting didn’t help much either).

This heartfelt letter came from MY KID! The boy, who for the most part, is on the quiet side. The boy, who to have a conversation with, you sometimes have to pull the words out of him. Wow. It’s going to take me a bit to pick out just the right frame for that letter. It needs a very special frame indeed.

I could tell that Adam was nervous and excited Friday night. When I went to say good-night to him, he was carefully picking out his clothes and laying them next to his Graduation cap. It was the most adorable endearing thing. (He’ll kill me if I say adorable).

I hardly slept Friday night. I was so excited. I went thru the memories of Adam’s life, like it was a movie. All of the amazing milestones: his first word, his first steps, his first actual sentence (yes, I remember that specifically because of what he said: “I hung-wee” and trust me, he has yet to feel full!), losing his first tooth, learning to ride a bike, and teaching him how to drive. The trips just he and I took: Hershey Park, the Corning Museum of Glass, Darien Lake, New York City. It’s absolutely astonishing to me to think that his childhood is all but over and he will be beginning this next chapter of his life.

GRADUATION DAY!!!!

June 10th 2017

Somewhere between laying his clothes out and sunrise Adam’s excitement got lost because when I went to wake him up he was none too thrilled. He finally rallied and he even agreed to a pre-Graduation picture! (after the threat of violence).

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Me and The Graduate

The ceremony started at 11am at Roberts Wesleyan College, however the students were told to arrive at 10am. That was fine by me because I wanted to sit in a very specific spot and wanted to secure my place in line. No one was going to stop me from being down front. NO . ONE.  I was going to be in perfect view of the podium so I could capture Adam’s speech on video. I give my husband props for standing with me in line until they opened the auditorium doors. I could rattle off about a thousand other things he’d rather do (watching paint dry) in that hour than standing in a line of people he didn’t know.

As soon as those doors opened, I bee-lined it in. I made my way to the row I wanted and waited for my family to catch up. Third row, stage left (for my non-theater folk, that means the right side of the stage). In perfect position of the podium to see Adam’s speech and to see him get his diploma. I was happy.

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Roberts Wesleyan College
It was a very nice ceremony. Adam gave his speech in between the speeches of the Valedictorian and Salutatorian. He spoke about all the work and fundraising that the National Honor Society did throughout the year. It was especially moving when he mentioned The Scoops Challenge that Adam and the NHS organized to benefit The Cancer Couch Foundation. This was the first year that the school did a fundraiser specifically for Metastatic Breast Cancer. It’s a fundraiser that they will continue to do every year during the month of October.
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Photo by: Bill Rahn

The Commencement speech was given by Patrice Walsh who not only is an Alumni of Bishop Kearney but a very well-known and respected local news reporter. She’s also someone I consider to be a friend and that made the day even more special to me.

To my surprise, Adam received an academic award in Social Studies. It’s a pretty fancy award too! It’s not the paper certificates that he’s gotten in past years. This one is glass and could do some damage.

And then it was time for the Graduates to walk across the stage! Thank GOD his last name is near the front of the alphabet because the waiting seemed to take FOREVER!!

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IT’S OFFICIAL!!

And just like that it was over. My Son had Graduated High School and I saw every single second of it. I have the memories, the pictures, the video of his speech and it was better than I could have ever imagined it.

Now, I reset the clock. I set the clock for new goals and new milestones to be around for. If I did it once, I can do it again and maybe again. At least that’s what I’m going to keep telling myself. Maybe, just maybe, my body and I will listen.

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The Proudest Mom Ever & My Handsome Graduate

Looking Back

2 yrs ago on, August 19th, while taking my husband to the airport, I received a call from my GP that I wouldn’t truly understand.

I had been undergoing tests for most of the month for what I had thought was a kidney infection. The previous Thursday I had an MRI and was anxiously waiting the results. I was to have knee surgery on the 20th and wanted to know before I went in.

Dr Pitts was trying to be calm and reassuring. She explained the MRI showed a spinal lesion and rib lesions. She explained she needed to consult an Oncologist for what to do next as this was very unexpected findings.

As I was trying to comprehend that she just said Oncologist, she went on to say that I would need a biopsy. She said something about it could be confined to the bone or coming from another site.

I could feel the tears well up in my eyes as my brain was connecting the dots and realized she was talking about bone cancer. I couldn’t breathe.

She told me to have the surgery and that she would call in a few days with the next steps. Whatever that meant.

I honestly don’t even remember the conversation I had with my husband before he left the car. Nor do I remember driving home. I just knew I now had a huge secret that I couldn’t tell because I didn’t have any answers other than I had Cancer.

My Arthroscopic knee surgery went off without a hitch. It was so odd to me because I was in no pain whatsoever. I was even questioning if the pain meds had even worn off at all. There was no throbbing pain, no uncomfortable feelings in my knee or leg at all.  Looking back now, it would see that it was Karma’s way of apologizing for what I would be going thru these next 2 yrs.

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I remember on that Wednesday, while my parents were staying with me that I knew I would have to tell them. I was waiting for the Dr to call to tell me these ‘next steps’ and that it would be a difficult conversation to hide. I waited until after we had dinner. I remember telling my folks to sit down that I needed to tell them something. It was so awkward. I told them that the tests I had had so far had indicated that I had cancer but that they were unsure if I had bone cancer or another cancer.  I told them about the lesions in my bones and that I was waiting for the Dr to call me back.  Their reaction, to me, was off. I had expected them to both be upset. Instead they were a quiet calm and told me not to worry that the Dr’s would get to the bottom of it. WHAT?

August 22nd, my Dr called. Blood work needed to be done before 5pm and she confirmed me for a PET scan on the 28th. She explained that the PET would tell them if there was more cancer and if the spots I had originated from another part of my body. So, I had my Dad take me to do the blood work. I asked what labs they were running and was told in addition to the CBC and Metabolic Pannel, they were testing for CA 15.3. Turns out that tumor marker is mostly for uterine and ovarian cancer.

Friday, Hubs came home. By the afternoon I received notification that my medical chart had an update. I was so confused. Everything was within standard range.

Saturday, August 24th was an awful day. I woke up and my right leg was double in size. I could barely wiggle my toes. I called the Dr on call and was told to go straight to the ER. After a very long ultrasound on my legs I was told I did in fact have a DVT. I had a clot at the top of my calf of the knee that was operated on. I was put on blood thinners and the nurse taught me how to give myself injections in my stomach.

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I would learn later that the clot was not necessarily a result of the surgery but because I had cancer.

Two years ago this morning, I arrived for my PET scan at 7am. I went alone. I remember feeling like a lab rat. I was put in a room where they inserted the line where they would inject the radioactive glucose and later the contrast. I remember as I left the Imaging Center, that everything felt surreal. Did everyone know I had cancer? Could they tell by looking at me? Did I look different? Was I dying? How did I get here?

My phone was like a time bomb. At some point it was going to ring. I just didn’t know when. Finally, right at 5:30 pm, it rang.

My Dr was very calm. She explained that the PET showed I had cancer in my right breast. But what about the spine and ribs? She told me I’d probably have to have a biopsy to confirm that they were also breast cancer or it could be a different cancer. She wasn’t sure. She told me she would be making appointments for me with an Oncologist and a Breast Surgeon.

I was so confused. How could I have breast cancer in my bones? It would be a few days later before I truly understood the magnitude of what was happening and what it all meant.

Some people remember one specific date as their Cancerversary. The day they were diagnosed. I, on the other hand, have most of August as a remembrance. It starts with the day I went to my GP thinking I had a simple kidney infection and ends with the phone call of my PET scan results.

I have been very lucky so far. I’ve been NED since February 14th 2014. I hope my luck continues and that I can keep playing this game of life with house money.
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Fireflies, Memories, Ugly Crying and A Bit of Yoga

I’ve been a total slacker with my blog. Life can be a real punk sometimes.

I had the mammogram and ultrasound but no biopsy. I met with the surgeon and she reviewed everything. Her opinion was that I’m A-Ok. She literally told me to go home and celebrate that I’m still NED. OH, and by the way…no mastectomy for me either. She still feels it’s an unnecessary surgery but that if I have more symptoms to come back immediately and we’ll talk again.

**Insert Screaming Here**

Honestly, the way I feel right now, I’m not even sure I want to see another Oncologist ever again. I’m very seriously considering just packing up all the ‘cancer baggage’ and tossing it in the river and going about my business.  When the cancer comes back (because metastatic disease always comes back) I’ll just let nature take it’s course and go quietly into the night.  I’m very comfortable with that plan. I’m at peace with it.

So, last week I took a self imposed ‘time out’ with Facebook and deactivated my account. Boy was that dumb. My blog page is now unseeable. Welcome to my wonderful luck. I’ll figure it out but it sure is frustrating. If you happen to be a follower of my blog page on Facebook, hang with me. I’ll be back.

This past Friday I boarded Amtrak for NYC. My soul sister, Melissa McAllister, we were meeting in the Big Apple to attend a workshop hosted by Jennifer Pastiloff.  ‘Being Human, You Are Enough’.  It was guaranteed to be an experience like no other. And it was.

We stayed in the area of Central Park West, within walking distance of Columbus Circle. It was a fantastic location. I about cried when I saw fireflies in Central Park.

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Our hotel on the other hand, was…well…the outside terrace where you could sit and chill suring the and then turned into a chic bar in the evening was nice. The rooms left a lot to be desired. The hallway was creepy. Very Stephen King.

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The bathroom was made for toddlers and the sleeping area was barely big enough for the bed we both crashed in. Unfortunately, double beds would have cost an extra $85/night. Thanks Priceline. Asshole.

Saturday was our workshop. Melissa and I were both so excited.  It was very surreal. It was held at Pure Yoga. Very cool place. We arrived early and got a place up front. I mean this was like seeing your favorite artist in concert. Being up front was mandatory.

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We were told to bring a journal to write in. Melissa was kind enough to bring them for us. We brought our phones in with us because, well, selfies of course. Duh. When Jenn finally walked in I think I was holding my breath. She has this energy about her. It’s something you can almost see floating around her.

As Jennifer began talking I started freaking out. This was going to be way out of my comfort zone. We began by writing something we wished for in or for our life on a sticky note and then we posted the note on the wall in front of us. Then we were told to grab a note off the wall. Any note..except not ours. The note we took we would look at each day and put positive energy out into the universe for the person that note belonged to.  That’s cool. Someone would be thinking about my hope and hoping the same for me.

We had many exercises that involved writing in our journal and then reading out loud what we wrote so others could bare witness.  It was difficult for us to read what was written. Many of people cried when they began reading. The coolest part was when Jenn added music to the yoga we did. It was loud, in your face music that raised the energy level to highs unknown.

I didn’t share my writings until the end. We were to finish the sentence: “I (full name) award myself a medal for….”  It could be one thing or as many as we could fit in. I was beyond uncomfortable knowing I’d have to read what I wrote out loud. I was pretty happy with the thought that I could have squeeked by. When it was my turn I thought I could do it without tears. Nope. Not even close. It all bubbled up to the surface and by the time I finished,  I had the snot bubbles like Jenn promised we’d have. It was ugly crying in all its embarrassing glory. And I owned it. I received a nice round of loud applause.

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Sunday consisted of sightseeing around the West Village, eating a slice with cold hard cider and tattoos to remember this weekend and life changing experience.

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We finished the evening with a delicious dinner at the Red Cork. We had good wine, shared small plates and had great conversation.

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I leave you with what I shared at the workshop:

“I Susan Rahn, give myself a medal for being a fucking outstanding Mother and raising an even more amazing Son. I also give myself a medal for not allowing my cancer to swallow me whole and for using my voice and bitchiness to educate others; for standing my ground when others try to smack me down and shut me up. I also give myself a medal for just being myself”

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