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

Almost Out Of The Woods

I’m THREE days away from turning 47 yrs old. According to the statistics (and my Oncologists back in 2013) I shouldn’t be here to celebrate this birthday. But for those that know me in real life (or know me well enough ‘virtually’) know that I HATE being told what to do. In fact, I will go out of my way to do the exact opposite of what is being forced on me if I don’t like it or don’t want to do it. So, here I am! Suck it Cancer!

Yesterday, was a glorious day in Manhattan. The sun was shining down and warming everyone and everything. It was a perfect day to walk the streets and enjoy the day. Which I did. Between the PET Scan and seeing my Oncologist. They were in two different buildings a few blocks away! It was also a perfect day to meet my friend and Underbelly partner, Rebecca Scheinkman. We both had scans at Sloan Kettering and were able to meet after our appointments to chat and hang out for a bit.

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Susan Rahn & Rebecca Scheinkman

OK, so without further adieu, here is the update: I received a call today from Sloan and my PET scan showed that I AM STILL STABLE. The nodule in my lung on my last PET scan did not light up as active cancer. This is the BEST possible news and quite frankly I am surprised and happy all at the same time. When your Doctor calls you and the message left is “When you call me back, have me paged”, well, you tend to think, “Oh, Shit, here we go”

However – I am still not out of the woods just yet. Both of my Oncologists have agreed that I need to have a Brain MRI and that will be happening within the week. There are some symptoms I have been having that they are both concerned with and want to rule out any metastasis. I haven’t spoken about these symptoms on Social Media because I didn’t want to make too much out of it and I figured I would wait and run it by my Doc’s before I started to push the panic button. I’m still not, but when they both agree that they want to look at your brain (thankfully, they actually feel I have one!) you can’t put the Xanax away just yet. They also want me to re-visit my Cardiologist due to some palpitations (or fluttering as I call it) that have been happening that cause me to cough. I do have two minor leaky valves that everyone knows about so they are erring on the side of caution and having him check this out.

So, there you have it. Over all, good news. So far. I just need to get through these last few tests and appointments and THEN maybe I can relax until the next scan in November. Wait, did I say relax?? Silly me, there won’t be any of that just yet with Adam’s Graduation next month, Adam’s Graduation party, Adam’s 18th Birthday (Holy Crap! Where did 18 years go??), getting him ready for College and moving Adam into his dorm.

Thank you for following along on this roller-coaster with me. I leave you today with a picture of Bella because she’s so darn cute.

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Bella Rahn

A Little Bit Of PTSD

Today, I’m headed to Manhattan ahead of my PET scan and appointment with my Oncologist at Sloan Kettering. I usually enjoy the drive down but this time I’m a little uneasy.

 

Last year at this time I had a scan and was told the Lymph nodes under my left arm (non-cancer side) lit up real pretty. That set off a battery of tests and biopsies to confirm the possible progression and to see if the pathology had changed. I also had my ribs biopsied again as they also looked suspicious on the scan and had been bothering me for some time.

It had all turned out OK. No progression in either the nodes or the rib but it was probably the second most stressful time since my diagnosis AND it all happened right before my birthday, which happens to be this Sunday.

As I sit in the passenger seat of the car writing this and remembering the events of last year at this time, it’s hard not to let my mind go to that place. That place where I imagine my Oncologist saying she’s sorry but the Cancer has spread to (pick an organ of your choice). Don’t get me wrong, I’m not being “negative”. This is fear and the fear is real. At some point this IS going to happen. It COULD be tomorrow.

So, until then, I will put in my ear buds and listen to my favorite music that takes me to my happy place and try to refocus my thoughts. There is Adam’s graduation to look forward to next month and all the festivities leading up to that day so regardless of what happens, I’m not going to let it get im my way.

See y’all on the other side…. xoxo

Trying To Catch A Break

I should have listened to my gut and stayed in sunny Florida but you know, Adam and Bella needed me.

Spring break was uneventful (for the most part) until Wednesday the 22nd. I had my monthly Oncology and treatment appointment and was also looking forward to seeing a friend and fellow Stage 4 patient. Our appointments finally lined up on the same day. It was going to be nice to see a friend there for a change.

When I arrived, of course the nurse called me immediately and I didn’t have time to chat with Melissa for very long but we met up again in the infusion room. We eventually had some time to chat before we went our separate ways and that’s when my day went sideways or I should say “fell apart”.

I went to pick up lunch for Adam and as I walked into the restaurant I tripped on the sidewalk and fell HARD onto my right knee. I’m still not sure how I didn’t smash my face into the concrete but I didn’t. I literally couldn’t move for a few minutes because of the incredible pain. Thankfully,  a few very nice people came to my aid. The way my leg/knee looked and felt, the decision was made to call an ambulance and have me checked out. I’ll be honest, smashing my knee sure took the pain from those injections right away. Forgot all about them!

Big props to the Ambulance company and EMT’s that helped me. They were very nice. Unfortunately, the double dose of Fentynal they gave me while enroute to Strong Memorial didn’t touch the pain. I told Neil, the EMT who was stuck in back with me, that I have a high tolerance to narcotic pain meds and it would probably take a horse Tranquilizer to take the edge off. It was adorable that he thought I was joking. (See that bag in the picture? Because I ordered ahead of time I STILL managed to get Adam’s lunch thanks to the Manager at Panera’s!)

I was extremely lucky I didn’t break anything. After x-rays to my knee, hip and femur, it ended up being a very bad bruise to my knee cap. I was sent home with a brace, crutches and muscle relaxers. Not a fashion statement I recommend.

I was glad February was over. I was ready to start fresh with a new month. March had to be better, right??? Eh, not quite…..

Wednesday March 8th, I woke up with a fever of 102°. This was not good. Rule of thumb is that when you are on a medication that affects your white blood cells, any time you run a fever of 100.5° or higher you must call your Oncologist. Most of the time you end up in the ED.

I called. They ordered labs and based on those would make further decisions. At the time I had no other symptoms other than a wicked headache.

Next day, my chest began to burn. Still had that fever. Labs were fine. I was told to “keep in touch”. Um, OK? I debated much of Friday about seeing my GP and ultimately decided against it because I was afraid I would end up in the hospital.

By Monday, I was a wreck. I was weak, my chest felt like all my ribs were broken and I had trouble catching my breath. I saw my GP. She ran some tests and when she called me the next day and told me I tested positive for the flu, I couldn’t believe it.

This is why I have to be very careful about who I’m around, making sure I wash my hands all the time and staying away from people that are sick or getting over being sick. I did have the flu shot but because my immune system is weakened and because of the medications I take comprise it even further, I’m at a high risk for, well, everything.

It’s also going to take me longer to get over this. I’m told I’m going to feel sick and generally crappy for another 2 weeks. It also means I had to stop my chemo meds. I need to give my body a chance to bounce back. That may not sound like a big deal…missing a few pills, but when 21 chemo pills cost $10,950/month and I can’t take 6 of them, that’s a loss of $3,128.58.

If all this wasn’t bad enough, thanks to my craptastic immune system and catching the flu, Adam ended up with it too. At least I was able to get him Tamiflu so he’s managing. But the guilt is there nonetheless.

Advocacy Stampedes in D.C.

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Melissa McAllister, Me & Melanie Childres representing The Underbelly

As a metastatic breast cancer patient and advocate, I try to use my voice in many ways to bring awareness to the fact that metastatic disease is woefully underfunded. I’ve been lucky in that I’ve been able to travel to be with friends and other fierce advocates because, let’s face it, there is power in numbers.

Last year, I traveled to Washington, DC to participate in the 1st Annual Die-In at the United States Capitol with Metup.org. The event was held on October 13th, Metastatic Breast Cancer Awareness Day. It was a symbolic visual event where advocates and metastatic breast cancer patients gathered on the lawn, lay on the ground and ‘died’ just as 113 women die every day of this disease. The Die-In was a bold vision that came from the brilliant mind of Beth Caldwell during a Metastatic Convention in Philadelphia in 2015 in which I was in attendance. You can read about that here.

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This year the event was joined by other significant partners such as:  METAvivor.org, CancerlandLandtv and Refinery29 and was renamed #StageIVStampede. We found out just days before that Oscar winning actress Mira Sorvino would also be attending and supporting her longtime friend, Champagne Joy. The significance of this is unprecedented as no other celebrity or voice of such magnitude has ever lent their voice to the Metastatic Community. The typical voice of a public figure with regard to Breast Cancer is the standard “pink” rhetoric of ‘stay positive and you can beat it’. That was not the message Mira had for lawmakers or the media.  And OMG – we met her and she is AH-mazing!

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Melissa McAllister, Champagne Joy, Susan Rahn, Mira Sorvino & Melanie Childres #Stage4Stampede, Washington D.C 

I attended the event representing The Underbelly.org, the online magazine dedicated to changing the breast cancer narrative I’ve talked about in previous posts, along with my co-editors and magazine founders, Melissa McAllister and Melanie Childres.

The day began at 8:15am. Everyone gathered at the Washington Monument to organize, and then began a peaceful organized march with signs in hand to the west lawn of the Capitol building. During the march I took pictures of those walking, hugged friends we came upon and even did a live feed via Facebook from The Underbelly page! Halfway to the Capitol we were met by a reporter for Refinery29 who asked to speak with us about why we were marching and why the was significant to me, a Metastatic Patient.

Once at the Capital we organized, heard speeches by MET UP co-founder, Beth Caldwell and then we laid down on the grass as a bell tolled 113 times representing the 113 women that die every day. As it was the previous year, it was emotional.

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Melanie Childres, Melissa McAllister & Susan Rahn – Dying for a Cure – Photo By Kipp Burgoyne.

After the last bell rang, as people began getting up, people embraced and the love and the promise of hope filled the air.

Many went on to hear speakers like METAvivor President, Beth Fairchild, METAvivor Co-Founder CJ Corneliussen-James, and Patricia Steeg from National Cancer Institute in the Cannon Building before breaking off into groups to meet with lawmakers. Their purpose was to inform them of the importance of allocating more funds to metastatic research and sharing personal stories is key in being successful.

Any lawmaker would be hard-pressed not to be emotionally moved after hearing personal stories from these Stage 4 advocates as to why research is important to them.

It was a good day seeing old friends and meeting new ones. It’s always a treat to meet in real life, people you interact with online on a daily basis and give them that long, overdue hug.

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We kept our Underbelly readers updated throughout the day with live Facebook updates from various parts of D.C. while we literally logged over 9 miles of walking. I’m willing to bet we helped Starbucks stock just a tiny bit that afternoon.

We ended the day taking pictures of the sun setting over the Capitol, the Washington Monument and the Smithsonian before taking the train back to our car.

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I’m already looking forward to next year’s event but truth be told, I’m secretly hoping it won’t be necessary because our lawmakers heard us on October 13th.

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 the Amtrax for NYC. My soul sister, Melissa McAllister, we’re 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. Our hotel on the other hand, was…well…the outside terrace where you could sit and chill in the morning and afternoon 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 us cried when we began reading. The coolest part was when Jenn added music. 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 was going to squeek 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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Acupuncture For The Beginner

My Oncologist suggested I try acupuncture to help with the side effects of the Exemestane I’ve been taking for the last 10 months as well as nerve damage from radiation I had to my ribs. To be honest, I wasn’t happy at the prospect of more needles but these are not supposed to hurt and I am SO ready to feel some relief that I figured it couldn’t make things worse…. Right??

So, I had my first acupuncture treatment last week and you wouldn’t believe how it started. 

Ready??

The woman (thank God she waa female because I would have walked out otherwise – you’ll see why shortly). I was told to disrobe but to leave my bra and underwear on and to lay down on the table. She would step out and come back when I was ready. She takes my pulse on both arms and says my Chi is totally fucked up and slow. Well we can’t have this so I need to get unblocked or else none of what she has planned will work. To do this she needs to put 4 needled is 4 very specific spots because they form a kind of circle. So she begins to explain that one goes in my chin…the other in my upper gum area above my teeth…another goes in my tail bone and the last one goes in my …..(sit down for this).. my perineum (you know, that space we have between our vagina and our anus). Now these needles don’t stay there, she just pokes them in and yanks them out. I can still feel that one in my ‘special spot’ and I left my appointment a week ago.

She had me sit up and she mapped out the placement of about a dozen needles she put up and down my back. These she left in place for 10 minutes. Finally she had me lay back down and she put what looked like little piles of ash on my chest and lit them on FIRE…yes, I said fire. I was instructed to let her know when I felt the heat and she would scoop the ash off. At the end she checked both pulses again. She said I was good to go and I left.

After I left I began to doubt the good this will do because how could putting needles near my lady parts and burning ash on me help??? Well, I did the thing I do best and I Googled. I found a message board on an acupuncture site and posted my concern. It took a while but I did get some replies. I was told that this was very common with someone who practices The Five Elements Acupuncture and that those four needles are usually done in the first or second session. The ash is called Moxa and its done before the insertion of needles on certain points. It was suggested that I give it 3-4 treatments before I decide to quit.

I’m going to give her the benefit of the doubt and continue going but there is NO way she’s doing those 4 points again.

Moral of the story….if you go to an acupuncturist make sure you ask where she might put those fucking needles before you find yourself in that familiar gynecological position with a strange woman’s hand up your cooch!!

I’ll let y’all know how this drama ends and if it gives me any relief.