Solar Powered Florida Adventures

Last week I did something I rarely do but realized I should really do more of – I took a mini vacation. The two days in Albany and the press that followed after took more out of me than I realized. I was exhausted. So, when the opportunity came for me to travel to Florida for a few days I (reluctantly) said yes.

My adventure began with a red-eye flight out of the Niagara Falls airport (yeah, who knew?) via Spirit Airlines to Ft. Lauderdale, FL last Sunday. Apparently, if you pack light enough, something I am NOT known for, you can fly very reasonably on this airline but don’t even THINK of using a legit carry-on bag. Nope. Think small backpack or something half the size of a carry-on suite case and it should also function as your purse ladies or you’ll be paying an extra $50 for luggage. I digress….

I landed in Ft. Lauderdale at 5:30am Monday and it was a glorious 75 degrees!! It already felt like I was going to have a good time. My second wind was waking up and asking about breakfast.

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My early morning breakfast view at The Hilton Doubletree

I should have taken a nap but where was the fun in that? In stead, I decided to take advantage of the glorious weather and get into my (GASP) bathing suit and head straight to the pool for some much-needed Vitamin D. I am extremely deficient after all. It would be very irresponsible of me not to lay out in the sun for a little while, right?? Yes, of course I had sun screen.

After a lovely afternoon of sun and Piña Colada’s, I made plans to see a friend in Key West. The last time I was in Key West was in 2014, which was my first time. It was a difficult trip for me because of all the bone and joint pain. I was also 45 lbs heavier. The heat made moving around that much more painful. I was looking forward to going back not as that person and creating some new memories.

Bright and early on Tuesday, I began the trip to Key West. The drive thru the different Key’s is so nice. About 4 hours later, I rolled into New town Key West and checked into the hotel. I had a bit of time before dinner and meeting up with Monique so that meant I had to check out the pool. It was a bit warmer at 85 degrees but still absolutely lovely. My brain can’t even comprehend leaving anytime soon and returning to cold weather.

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I met Monique for dinner in Old Town Key West at a lovely restaurant where she works part-time. It’s on the water where the cruise ships dock. There is a large crowd that gather for cocktails at the outside bar to watch the sunset. The food was amazing and the dessert was from heaven. Yes, I could have had the Key Lime Pie but when Caramel Crème Brûlée is on the menu you order the Caramel Crème Brûlée. Always. Thems the rules.

We had a LOT of laughs and a crazy adventure after dinner that involved visiting a local dive bar off the beaten path that, if I had to guess, is probably only known to the locals. Probably for good reason. The rest of the night will, as they say, stay in Key West.

I wrapped up my stay with lunch with Monique at the Blue Macaw for Conch Fritters and then a quick picture of the Southernmost Point. A landmark that I didn’t make it to last time I was in Key West because of the extreme heat.

I also have to add that if ever in the area, at Mile Marker 15, you simply MUST stop in at Baby’s Coffee. They roast their own beans and have the most outstanding blends of coffee. There are also sandwiches and snacks if you’re hungry. If you’re a coffee connoisseur but not going to be in Key West, you can order their coffee online.

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Wednesday night, I very begrudgingly made my way back to the airport to begin my way back to the cold tundra of NY. I was already beginning to become sad knowing that I was leaving the lovely sun and warm weather but Adam and my pup Bella were waiting for me to come home. Oh, they are SO lucky I love them so much.

I barely remember getting back home Thursday morning. It was sometime around 3am. I just know Bella came our of Adam’s room to great me and jumped into my bed with me. When it was time to wake Adam up 4 hours later, this is how I woke up…..

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This trip taught me something important. If I’m going to keep doing the things that are important to me. If I’m going to keep trying to make a difference in the world, I need to remember to take time for me too. Not just Dr appointments. I need to remember to take breaks and recharge. I can’t run myself down or I won’t be good to anyone.

It was great to get away. I’m so lucky that I was able to. I had a fantastic time and I am absolutely counting the days until I can do it all over again but God help me, coming home to that furry face is the sweetest thing ever.

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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 the Amtrax 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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Just Don’t Think About It

I haven’t written in a while. I’ve been dealing with pain issues and getting thru the holiday season without needing bail money.

First, my pain has been off the charts. I’ve been having horrible pain in my hips/pelvis and back. The morphine I’ve been on isn’t helping and that’s not good. After emailing my Oncologist back and forth she increased my 12 hr pill to 2 pills every 8 hours with a separate 10mg morphine every 2 hours as needed. It helps, but unfortunately, I’m also sleeping. I can’t stay awake with this increase. So I only take the higher dose after Adam is home from school.

Now, on to tonight’s rant. Everyone deals with having a terminal or chronic illness differently. I happen to have a large network of friends on Social Media that I talk to daily. Whether I’m venting and getting support or I’m helping someone else with an issue. Sometimes we don’t even talk about cancer at all. When I bring up my Social media friends some of my family members think I’m doing myself a disservice and actually forcing myself to think about my situation and bring myself down. “Just don’t think about it.” Its what I hear often and it drives me bat shit crazy. I can’t do that. I mean its completely impossible to get thru a day without thinking about cancer in some way, shape or form. Its my life. Its what I know. Its not going away. Its the equivalent to telling a parent to not think about their child. Not thinking about my illness isn’t going to change anything. Its not going to ‘cure’ me. Its not going to extend my life. Its not going to stop the cancer from growing inside me. So, let me be. Let me surround myself with people that understand, that know what its like. Let me talk to people that can make me laugh thru the tears, that understand my morbid sense of humor and don’t judge me.

The only good thing about my cancer is finding these folks, bonding and forming the friendships I have with them. I’ll be honest, cancer isn’t making me a better person, its not making me look at life thru rose colored glasses like you hear from some people. Cancer wasn’t the ‘gift’ some people want you to think it is. Except, for friends like Mia, Lulu, Melissa, Nancy, Annmarie, Andi, Judy, Sandy and many, many more there is nothing good about cancer. Nothing.

So, stop telling me to ‘just stop thinking about it’ because I’d have to stop talking to my friends and I need them like they sometimes need me. Respect that I know what’s good for me. Respect my feelings like I respect yours.

Friday, January 9th is scan day. By the end of the day I’ll know if the pain is the cancer spreading. I’ll know if the treatment I’m on has to change. I’ll know if its just my hips or other bones or organs. I will go thru this week with a smile on my face and I will act like everything is OK. I will also be thinking about it. I will talk to my network of friends like I always do. I will also be thinking about it. I will have their support and they will make me feel better in a way only they can do.

And I will also be thinking about it.

‘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.