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Bright Lights shining in a Lonely Nightmare

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It took a global health epidemic and stay at home order to make me start writing again. I have no excuse now, I’ve got plenty of time on my hands! Just want to preface this post with a warning–this is not just a quick blog post, but really it’s more of a short story. I hope you will read it and feel something special. I decided to kick off my reunion with this site by sharing a story that really goes with the theme I’ve created here—things happening for a reason and Duran Duran. Only this time it’s really not about me, but someone I can now call a ‘Friend of Mine’.

If you’ve read my other posts about my cancer journey, you will see why Holly and I were meant to meet… If you have not read them yet, grab a comfy chair and a glass of wine or big cup of joe and read those first– it will help you really understand this amazing story. Hey, you have nowhere else to be right now!

One warm June evening, I was sitting on the patio having a glass of wine and scrolling through Facebook, when I came across a post announcing that Duran Duran would be at Kennedy Space Center on July 16 for a special show to celebrate the 50th anniversary of the Apollo 11 Moon Landing. Of course the excitement welled in my belly. Tickets were a bit pricey—$300.00 (ouch) and that was all they offered at that time for general admission. A few months prior in February, I had spent a good chunk of change on the VIP package to see them in New Orleans, but this show was not to be missed! It would truly be something unique and amazing. My husband, who is used to my “habit” didn’t even say a word about me going, he assumed I was already purchasing the tickets. I really didn’t think any of my friends would want to fork over 300 bucks, but to my pleasant surprise they were up for it! My friend Amy, the “Martha Stewart” of our group as we lovingly call her, was always creating amazing things, so I had a feeling she would come up with something great for the show. We immediately started collaborating and came up with some really cute ideas for tees to wear.  Yay, another fun Duran Duran outing to put on my calendar! I was over the moon.

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Holly noticed a lump in her breast in June 2019. She wasn’t too worried because she had a “clear” mammogram in February, just 4 months earlier, that revealed she had dense breasts–something she already knew from previous mammograms. She chalked up this new-found lump as just being more dense tissue. When she went in for her annual well-woman visit and mentioned it, her doctor wasn’t too worried about the lump either, but put her on antibiotics and ordered a 3-D mammogram as a precaution. After completing the mammogram, Holly was advised that she would need to schedule a biopsy. Still, she wasn’t worried—she just assumed the doctors were all erring on the side of caution. She completed the biopsy in early July.

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Paula, Amy and I went for hair appointments before heading over to the coast–something my friend Paula has liked to do before our Duran shows, and has become our little tradition. Since we rarely go out on the town any more, these shows are always a fun night out for us, like old times. The hair had to go up this time, as it was way too hot and sticky to do anything else only to have it destroyed by the humidity. We were having a great time at the salon–Amy had bought us fun space themed hair accessories to put in our hair and we were getting really excited for the show. After our hair was done, we all drove over to the coast, checked in to the hotel, and met up with Jennifer, a friend of Amy’s who was also a Duranie that I hadn’t met in person until this day, though I felt like I had known her forever. I was so thrilled to meet another Duranie like me that could join my tribe of concert-goers! Before we headed over to the Kennedy Space Center, Amy surprised us each with a John, Simon, Nick and Roger head on a stick — all donning astronaut helmets that matched our shirts. These stick guys would eventually become ‘Duran fans’, as it was still sweltering outside even though we were headed into the evening. Summer in Florida! These fans would also have much more meaning, though I didn’t realize it then. The tees Amy made us came out amazing, we would even be asked for pictures at the show and people wanted to know where we got them. Amy could have made a fortune in sales!

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Holly was so excited for the Duran concert. As she was packing up her things to leave work early for the day and head over, her co-worker told her that her doctor was on the phone. She picked up the receiver, now feeling a little worried because it was the actual doctor calling and not a nurse. Holly could tell by her tone of voice that it wasn’t good news. “We got your results back and the biopsy showed malignancy.” Her heart felt like it stopped beating and she was frozen, not believing what she was hearing. “What stage is it and why was my mammogram fine in February?”, she blurted out. She wanted all the answers at that moment, but the doctor just said she would refer her to Moffitt Cancer Center for more information. She hung up the phone and immediately started crying quietly while collecting her things. Another co-worker who happened to be a breast cancer survivor asked her what was wrong and the soft crying turned into sobbing while she told her what she just learned—she has breast cancer. She got in her car and sat there a moment, contemplating not even going to the concert but instead going home and telling her husband immediately. After thinking about it, she realized there was nothing he could really do, and she would just be at home crying, worried and depressed from the news while missing the concert she so looked forward to. She made the decision to wait one day to share the news and proceeded to go to the concert as planned. On the long lonely drive there, she cried and cried, even stopping at one point to get some hard lemonade at a convenience store to calm her down and make her feel better. As she got ready at her hotel, she started to put the cancer in the back of her mind, focusing her thoughts on Duran Duran and the show. But the calls that were coming in from Moffitt eclipsed the euphoria. Still, she moved forward and got ready to go.

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It was scorching  hot at the Kennedy Space Center turnstiles, no breeze and lots of people gathered waiting to get in. Amy, ever so prepared, had bought us battery operated fans to wear around our necks that actually lit up too, perfect for the show. We pretty much wore them out just waiting for admittance, it was so hot. There were many Duranies there of course, all chatting about the band and the upcoming show. I always love meeting other fans, there is a comradery between us that others don’t understand. We snapped some pictures, when we still all looked good before the sweat set in. We chatted with a guy that looked like he was a rock star with his black neatly styled hair, we met a couple girls that were there together and then one girl that seemed to be there alone. I thought to myself “wow, that girl definitely has dedication and devotion to go to a concert alone, I probably couldn’t do it”.  When the gate finally opened, we all ran in to secure our spots up front. Thanks to my new Duranie sister Jennifer, who was sprinting like she was running from a mad bull in Pamplona, we got spots in front on John’s side. I was so eager to get the show started now that we had our spot, but we still had hours before show time! Paula and I decided we would take a walk, find the restroom and get some beverages, while Amy and Jennifer held our places. The lines for drinks were ridiculously long and we realized we would only be doing this once—a little can of cheap wine just wasn’t worth the wait.

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Holly parked and downed another hard lemonade drink to try to calm her nerves, then headed toward the KSC entrance. She saw the Duranies already lined up, all hoping to get a good spot in front to see their guys. She recognized someone she knew from social media but had never met in person, so she started talking to him. She noticed a group of ladies arrive, all dressed in cool tee shirts holding hand held fans with astronaut-themed band member heads on them. Their names, she learned, were Kelly, Jennifer and Amy. Holly chatted with them, and thought they were so nice and friendly. Being there in the excitement of the moment, she forgot all the bad news she had just received earlier and just enjoyed being with the other fans. No way she was going to mention the word cancer to anyone! After the gate opened, Holly ran to the stage in the hopes of getting on the front row on JT’s side. It was so hot but it didn’t slow her down and she ran as fast as she could. Her new Duranie buddies weren’t far behind her and actually ended up right next to her. After settling in, Kelly and Paula left to go to the bathroom and to get drinks. The heat was brutal and Holly noticed the JT astronaut fan sticking out of one of their bags so she asked Amy and Jennifer if she could see it. She started to fan herself, and at that moment a photographer came up to them and asked them all to pose with the stick fans for a picture. Holly had no idea it was actually a photographer for DD’s social media.

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Paula and I returned to our spots with cold drinks in hand, and I noticed that Amy and Jennifer were looking at their phones smiling. I figured they were posting some selfies on Facebook that they took while we were gone, but realized later that a photographer from Duran snapped a photo of them holding the fans and it was posted on Instagram and Facebook. The girl that we had just met in line was also in the picture. I was so upset! How could this happen? Why did it have to be while we were in the bathroom? It became a running joke all night, me whining about missing my big break on Duran’s social media. I mean, we didn’t even really know this other girl and there she was holding my John! Not fair!

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Holly asked Kelly to hold her spot at the front so she could get a drink. The line was so long and she waited there for what seemed an eternity. Her phone wasn’t getting a signal so she couldn’t look at it, so she started chatting with another fan and it passed the time. The concert was going to start soon and she was so worried her great spot would be taken so after she got her drinks she headed back right away. By this time, the field was so crowded but she squeezed her way back in. She got a signal and noticed her phone was blowing up with messages from other fans telling her to check DD’s Instagram. She pulled it up and there it was– a picture of her with Kelly’s JT fan, along with Jennifer and Amy and their fans!! She was so excited, but immediately felt bad after thinking about how Kelly missed out on that photo. It was, after all, her fan and those were her friends. She felt it ruined the dynamic between the other girls and her, and bothered her a bit, taking away from the excitement. She soon forgot about all of that. The drones twinkling in the sky, the sound of The Universe Alone, the orchestra. She forgot about all the events that weighed heavily on her mind and immersed herself in the music from the band she has loved since 1984.

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The show was amazing, to say the least. Not only were we right up front, but just being part of this celebration with my favorite band was unforgettable. The moon was full and the weather, while hotter than the sun’s surface, was clear and rain free. The orchestra and choir just added richness to the songs that I already love so much. This one would go down in the books for sure, right up there with the Miami Sirius show. The heat was on for sure, but we didn’t stop dancing and singing. It was over way too quickly and we headed back to the car and sat in the endless stream of traffic trying to get out. I was still mad about the picture, but happy for my friends that they were in it. For days after the show, I would see that picture pop up on Facebook and Instagram. It haunted me, but it was silly to be upset about something so trivial. The girl that was in the picture, Holly, had friend requested me and one day I noticed it and accepted it. One of the first posts I saw on her page caught my eye and made me stop. She was checked in at Moffitt Cancer Center getting some tests done. Cancer. Something I know all too well. I sent her a quick reply that I wasn’t sure what she was dealing with, but that I was a breast cancer survivor so if she needed anything to let me know. We started chatting and I just could not believe what she told me. Her story was so much like mine–from the way she found out and being in disbelief, the type she had, her treatment plan, all of it! I just knew right there that this was not a chance meeting between 2 Duranies at a concert. It was so much more. We were meant to connect. When she told me that she found out that day of the show, I got chills.

It was at that moment I realized something bigger was at play here.

That picture of her holding the JT fan on social media was meant for her, not for me. She was meant to be in that photo, it was a little pick-me-up gift from the universe to her on that emotional day. Any feelings I still had over that picture evaporated at that moment, and turned into complete and utter happiness for my new friend. Just like when I bumped into John at a lunch work meeting while still recovering from one of my many surgeries, she had the picture. And I couldn’t stop smiling!

Holly and I have chatted often and we’ve met since then. Amy made Holly her very own JT on a stick that I gave to her one night at dinner. I was going to give her mine, but it was starting to fall apart from all the fanning and waving it had been through, so Amy offered to make her one. We keep in touch and she keeps me posted on her treatments and journey. I hope I am helpful to her, as I know so many helped me. Our paths are so similar and Duran really did bring us together in friendship. It was through our favorite band we met, which is so amazing to me.

This story, like one of Aesop’s Fables, has an important moral too. We never know what someone else is going through, so we need to be kind to each other. It’s that simple. You never know what impact you are making on someone’s life. We’ve heard all of this before, but sometimes it takes a really special moment to make you realize it.

Thank you to Holly Rouse for contributing her side of the story for this post.

Still waiting.... it's hot!
Waiting to get in
Hot Duranies!
The shirts!
The shirts that made us famous! Looking at Planet Earth and Leaving with an Astronaut!
The famous DD post!
The picture that was seen ’round the world

 

 

Happy Last Year

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Cancer. It is something ugly that I dealt with in 2014. But that was then and this is now.

When the big C hit me in January 2014, there was still a Happy New Year Balloon dancing around the house, all cheery and colorful. When I bought it for the kids, it was with the belief and hope the new year would be an even better year than the one before. When that ball drops at midnight and you kiss your loved ones  while clinking your glasses, you never think that maybe the new year won’t be that awesome and happy. You want it to be a great one, better than the last.  But you just don’t know. I remember when I was diagnosed just staring at that damn balloon thinking how ironic it was because happy new year turned into crappy new year for me. I wanted to take a kitchen knife to that thing several times, but I just couldn’t do it. Call me superstitious.

It was a rough 2014, no doubt about it. But that year came and went, and I spent that NYE with my husband, kids and close friends in one of my favorite places, Disney. I always forget about things at Disney and I was so happy to see 2014 go. So when the fireworks started going off at midnight, I was thrilled to usher in 2015.

2015 was a pretty good year. I finished my treatments, and saw some new places. First time visiting Las Vegas (now I am hooked), Colorado, Seattle and to finish it off, went on a cruise to the Cayman islands and spent Christmas at Disney with my parents. I hoped 2016 would even be better, and it was.

I had a lot of quality family time–my husband, kids and I went to Vegas, Hoover Dam, Grand Canyon. We then went on another cruise and back to Disney, this time staying in a childhood favorite hotel of mine The Contemporary. It always makes me happy to see my kids at Disney enjoying themselves so much while remembering my childhood there. Nothing compares. I also celebrated my birthday with old friends and new ones watching Duran Duran perform in VEGAS. (I told you I am hooked!). That concert had me on my feet the entire time, I was even jumping up and down for many songs. I don’t dance like that, but there was something about seeing them and the music and what I had been through that just got me. I cried, sang, laughed, screamed like a teenager. The only thought I had about cancer was that I was so lucky to be there enjoying myself and that it was behind me.

One memory about 2016 that stands out is one that I firmly believe was arranged by a higher power.

Let me start this by saying that Duran Duran has  not only gotten me through my cancer, but life in general. I am working on a book that goes into more depth on how their music has been my therapy, but lets just say that some of my darkest hours have been made better by simply hearing one of their songs. As I wrote in a previous post, the song “What Happens Tomorrow” got me through the darkest time after my diagnosis. I hadn’t listened to the radio in my car for about a week, I would just drive around numb in silence. One morning, I was really scared and asked for some sort of sign that I would get through it. I decided on the way to work that morning to turn on the radio for some noise in the car, and what came on blew me away. “What Happens Tomorrow” was just what I needed and I know someone from above was giving me the sign I begged for.

So, fast forward to September 2016. I had just gone through my second and last surgery for reconstruction (my 4th surgery since diagnosis) and Duran were playing at a small venue downtown. My husband got me really good seats and my friend Tina came down to see them with me. Side note: Tina is also a survivor, we met through an online support group and have become really close–proof that something amazing can come out of something horrible. When we met, we quickly learned that we both love Duran Duran so we always said we were going to see them together when they toured, never thinking it would be twice!

The concert was amazing, though I didn’t have quite the energy I had in Vegas because of my surgery. But that couldn’t stop me and I didn’t sit down,  determined to keep going for my guys and show them the love they deserve.

Tina and I joked that maybe we would run into them downtown after the show, but never really thought it was possible and it never happened. The next day, Tina went back home and I went back to work after my surgery leave. A coworker and I were scheduled to go to lunch, but I tried to cancel, telling her we should just stay in the office and not venture out. It was too hot to walk around, and I was really tired from the surgery and the concert. She insisted, saying that she wanted to treat me for my birthday since we never celebrated. After several minutes of going back and forth on it, I gave in. We went to one of her favorite downtown restaurants in her favorite hotel. Before going to eat, she showed me around the hotel, pointing out the history and the beauty. What happened next blew me away.

While heading over to the restaurant, we turned the corner and right in front of me was John Taylor. I stopped dead in my tracks and looked at my coworker, not even believing what was happening. She knew how much I loved Duran and that I had been at the show the night before, so she put two and two together and realized that I was standing in front of one of them. I was speechless and borderline crying. Then Roger walked over from the concierge desk joining our little circle. This was too much–I had met John a couple of years ago, but he was behind a desk signing books and there were a lot of people in line, so it was rushed and not as personal. This was like magic. They were on their way out, so had we not walked around or if we arrived at that spot just a few minutes later, I would have never seen them. I couldn’t even relay how I felt to them and why I was so emotional. I wish I could have told them what their music has done for me and how it got me through. But I couldn’t utter much at all. John could see the emotion on my face and actually consoled me, he must have known the impact they made on me by my reaction. This meant so much to me– they were really nice about the whole thing, confirming my devotion to this band.

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When I went back to work the next day, I couldn’t help but share my story with others. I told one person how the song came on that day giving me hope, and then how I ran into them at the hotel. She said that my guardian angel closed the loop for me–that I was given that song for hope and then arranged that meeting to signify the end of my surgery and cancer journey. It made so much sense and I truly believe that is what happened that day.

So 2016 was a great year. I am yet another year out from cancer, and I have memories I will never forget. I am going to spend the final hours of 2016 cherishing these memories.

I will admit tonight won’t be the easiest night–Duran Duran are playing in MD and my fellow Duranie Tina will be there ringing in the new year with them. I tried to make the trip work, but decided that it was too much to try to go. Now I regret it. I wish I could ring in 2017 with Tina and Duran Duran, but I will have to just live through her posts. Now I know how she felt when I met them after she headed home. I have heard they are adding dates in Texas in March, so I will hold onto that. I have to see them again, I’m kind of addicted.

Happy Last Year!

This song sums it up for me. Enjoy!

 

 

‘Tis the Season to be Thankful-This one is for my hairstylist Cassandra!

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Well, I gotta say it feels so good to be back here at the keyboard. I’ve been so busy with the hustle and bustle of the holidays that I just haven’t taken the time to write. As I sit here sipping the last drops of my coffee, charging up my batteries so I can embark on a hectic day of Christmas shopping, I started thinking about things and feeling a bit sappy. Everyone knows it’s the time of year to appreciate those that have made a difference in your life in some way or another, so I am focusing my next series of posts on those people that may not even know what impact they’ve made on me.

Now if I don’t write about you it doesn’t mean that you didn’t help me during that dark time. There are just a few that I want to take a moment to recognize that may not even know how they made me feel.

This one is dedicated to my hairstylist, Cassandra.

Cassandra’s job is to make people beautiful. She works hard every day snipping, coloring, washing, drying, combing. She attends classes and shows, and helps teach others how to perfect their craft. She is damn good at what she does and clearly has a passion for her art.

When I was diagnosed with cancer, my mom suggested I cut my long thick hair off into a short style, so when it started coming out there wouldn’t be so much of it in the drain, on the floor and on my pillow. I had worked so hard growing it out and getting it the right color, so this was unbelievably hard.  I took her advice though, and went to my stylist, telling her what was happening and why I wanted to chop it off. She was so awesome with me and cut it into a cute style that I would only actually have for about a month, no charge I might add. She did her best to make me feel cute, knowing how hard it was for me to cut it. But that isn’t the only thing she did.

Losing my hair was very traumatic and one of the hardest parts of my journey. I didn’t see Cassandra for quite some time, and I will never forget my first salon appointment after my hair came back in. It felt so incredible to actually go in and have my hair trimmed. Sitting in the chair I realized how I missed the whizzing sound of blow dryers in the background and the delicious tea that they serve. I missed hearing about Cassandra’s dogs and where she had traveled to lately. Normally I don’t give much thought to going in for a hair cut (I enjoy it, but it’s just another part of my routine), but that day it felt amazing. I actually felt like a normal woman again!

She was there for me along the way as it grew back. At first it was straight and looked cute, but then it started coming in very curly and wild and many times I wanted to just cut it all off short and forget about ever growing it again. But she  wouldn’t let me do it. She knew how much I wanted my hair to be long again, so she kept telling me to bear with it and we would get it there. I had faith and trust that she knew what I needed to do so I listened to her.

I will never forget the time I got it styled and colored after months of just trimming it and growing it out. My hair had finally started straightening out and had grown long enough to actually do something with. I remember looking in the mirror and just feeling so happy. I finally looked like myself again with a hair style that felt like mine, with no chemo curls! She worked a miracle that day. I hugged her and walked out to my car, looking in my mirror through tears. Cancer did not rob me of my hair after all.

I never told her how I really felt that day. I felt pretty for the first time in ages, and that meant so much to me.

Cassandra not only works hard at the salon, but she works hard at home with her fur babies. She has rescued many dogs and gives them a loving home and lots of attention. She is making an impact not only with her clients, but with man’s best friends too. Being a dog lover, this warms my heart so much. I love seeing pictures of her family.

Feeling pretty after chemo is HUGE for a woman. It takes so much from you-messes with your skin, your nails, you lose your eyebrows, your eyelashes, your hair. It ages you and makes some lose too much weight and others gain weight. While it was all worth it to have my life, it is still very hard.

Cassandra, thank you for what you do not only for me but for all your clients (and of course the boxers you’ve rescued). I know you like Duran Duran so here is a video for you!

 

 

 

 

 

 

I won!

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Let me start by saying that I never win anything. I’ve entered countless raffles, sweepstakes, bought lottery tickets, entered my name into various drawings. Nothing. I don’t gamble much for this very reason. I can’t stand to see my money disappear.

One day I was in one of my favorite beauty supply stores, and upon checkout I was asked if I would add some money to my bill for a donation. I will do this occasionally if it’s a cause I believe in. Like the American Heart Association–I think of my uncle who had a heart transplant. Or St. Jude’s–I think of my own kids and how lucky I am they are healthy. So when they said they were raising money for the Breast Cancer Research Foundation, I didn’t hesitate. I guess when I donated, they had me fill out a card to enter a raffle for a prize. I don’t even remember doing this–I probably didn’t give it much thought since I NEVER WIN.

Now granted, this prize is not a million dollars, nor is it a week long trip to a five-star hotel in a tropical destination. But I am just as excited about it. It’s just a tote bag with some beauty products in it. I won’t have to buy much for a while, I’ve got everything from perfume to lipsticks. Shampoo to moisturizers. I’m pretty psyched!

When I went in to claim my prize, the girl working there thanked me for my donation to breast cancer. I had forgotten about filling out the card  and the donation until she mentioned this. I replied, “Breast cancer? That’s why I won this? Well it’s pretty amazing that I won THIS prize because I’m actually a survivor.” She put her hand to her mouth looking emotional and said that it was meant to be.

Lately I have been worrying about the metastis thing. I’ve had some neck pain that is nagging me and of course I think it’s cancer. I hate that for the rest of my life, I will feel this way. When the call came in that I won a prize, the neck pain took a backseat to my cheer. As soon as I got it home, I felt like a kid on Christmas opening their stocking, going through all of my little treasures, pulling out this and that, opening the packages see what was inside.  It helped me forget about the stupid neck pain. I believe it was God’s way of telling me to stop worrying so much. It was just the diversion I needed.

This is how I feel about cancer and metastisis , from one of my all time favorite Duran Duran songs:
I walk out into the sun
I try to find a new day
But the whole place
It just screams in my eyes
Where are you now?
Cuz I don’t want to meet you
I think I’d die–
I think I’d laugh at you–
I think I’d cry–
What am I supposed to do,
Follow you?

 

 

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Pull my shirt off and pray we’re coming up on re-election day

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I have nothing much to post right now except I thought this song by the Duran Duran spinoff group Arcadia was worth posting. This video is the 80s in all their neon hair sprayed made-up glory.

And the lyric above couldn’t be more perfect.

I won’t be pulling my shirt off any time soon, though part of me thinks what the hell! This election might be the thing that sets me over the edge! A lot of suffering, pain and surgery went into this bod, so why not??  And the picture that comes to my mind when I imagine me at an Election Day viewing party just tearing my “I’m with her” tee-shirt off and starting everyone in the Lord’s Prayer makes me laugh a little.

I am not going to get into who we should all vote for, I don’t make it a habit of talking politics much. But hopefully you get out there and do it.

Now, let us pray.

 

Hair

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Seen better times than right now
But I’m not runnin’ away
No nothing’s gonna bring me down

It’s just been one of those days…

 

This past week, I was able to put my hair up in a ponytail for the first time in over 2 years. That’s progress!

Someone at work commented on my hair the other day. “Wow it’s getting long!” Flashing her my boyish photo on my work ID, I replied “you could say I’ve come a long way from this”.  She smiled, and asked the million dollar question. “What made you cut it so short?”

I could have just said something like “well I was going through a phase” or “wanted to try something new” but I have a hard time lying. So I fessed up and told her about my treatment.

I remember that part of my journey through hell vividly. It was the worst part for me, worse than surgery and treatment itself. Everyone with cancer handles this differently. Some people I know proudly showed off their bald beautiful heads. But not me. I think for me, it was officially telling the world I was sick. And I didn’t want people to know.

Grab a handful of your hair. Give it a firm tug. Kind of hurts when you do that, right?  Now imagine taking that same handful of hair and pulling it, but instead of feeling an ouch, the hair just comes out with ease and no pain. You never think you will experience that. You never think you will know what your head looks like without hair.

I remember when I started wearing the wig, I still had hair underneath. My long thick hair had been cut very short by my stylist in preparation of the big day it would start falling out. When I came home after work, I could not wait to remove the itchy wig and let my head breathe. Every day, I would give my hair a tug to see if it was the day. I remember the first time I pulled and didn’t feel the usual resistance, it was still shocking even though I knew it was coming. Once it started falling out, I would just sit down at night and pull out clumps, just wanting it gone but not ready to shave it.

One day, I pulled the wig off and it was really bad. I had hardly anything left, and what was there was  really thin and limp. There was no reason to hold on anymore, so I asked my husband to get the clippers. I cried, I laughed at his bad jokes. But we got rid of it.

Here are some of my wig looks and the first time  I went wigless in public when it was growing back. That was rough, but I was on a cruise so no one knew me. Not ready to share the bald look, but I will eventually. It is still hard to see myself like that.

On Halloween, I was trying to put together a costume. I thought a wig would make the look, but the thought of wearing one again gave me the chills. No thanks.

Really?

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I know you’ve said this before. Maybe it was on that cold and dreary Monday morning when you slept through the alarm, and your child couldn’t find matching socks which made you even later, then your dog threw up on the carpet, and just as you cleaned the last of it the hem on your pants ripped and then you had to drive to work in the middle of a torrential downpour in stopped traffic which made you late for an important meeting.

Really?

Or maybe it was opening the door to the house on a 100+ degree  day and rather than feeling the cool relief of the a/c, you realize that there was no a/c — and bonus, you can’t fix it– you need a brand new unit.

Really???

Or maybe it was that one time you actually did a full-on grocery run, filling up the cart with a whole week’s worth of high-quality meats, organic milk, cheeses (you are the type of person that gets a few things here and there and goes to the store several times a week) only to put it all away and during the night the power goes out which spoils all the food.

Really?

Or maybe it was when you were sick during chemo and every day you begged your 13 year old sweet yellow lab to hang on for you through all of this. You could see her slowing down, but pleaded with her to be there to comfort you. You then watched her pass away right in front of you.

Really?!

Or maybe it was right after surgery when you finally ventured out in public. You still had tubes coming out of both sides of you and you were still walking a little hunched over from the pain of your incisions. You were so excited to find that perfect decorative vase to go on the ledge by your front door, only to realize when you got up to the cash register that your wallet had been stolen right from your purse. But on a good note, in the midst of this you get the call from the surgeon that they found no evidence of cancer.

REALLY?!

Life is full of “really” moments. And you can get hung up on them. I used to.

I now know that a plan has been written for me, but I was not given the details. It’s frustrating, but it is what it is.

Woe is me.

Why me?

It’s not fair.

Yeah, I could have said that many times in my life. When I got the cancer diagnosis, I never said “why me”. I’ve always remembered that as bad as I thought things were in my life, there are people out there that have it much worse. I was dealing with a life threatening illness, so I could have really been pissed off and feeling sorry for myself. But I didn’t. What about the parents that lost their child while on vacation at the “Happiest” Place on Earth? What about them? What about the victims of Sandy Hook Elementary? The horror that they went through and the incredible loss the parents will never get over.  What about people in other countries that are sick but can’t get medical care or even clean water to drink?

I will admit that while I never felt sorry for myself, I did complain and whine. It was my way of dealing with it. But then I think how could I complain that my water tasted so bad on chemo–at least it was clean and available and SAFE!

I don’t have it so bad.

Sometimes when you have a  moment of despair and feeling sorry for  yourself, you have to ask yourself if there are people out there that have it worse. Most times they do.

I just watched a news report about a family coming home from their kids football game. 4 kids in the car with their parents. Both parents killed.

It puts things into perspective.

I had cancer. I got treatment. I have scars. But I’m extremely lucky and blessed.

 

 

 

 

 

 

Free

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I will never be free. Anyone that has had cancer knows what I am talking about.

When you finish treatment and get the NED (that’s no evidence of disease) word from the doctor, you are like “what the hell am I supposed to do now?” You are no longer getting toxic chemicals pumped through your body to kill the cancer nor do you see the doctor every three weeks, which leaves you  feeling a little alone. You feel like you should still be doing something about this horrible thing that set up camp in your body and tried like hell to kill you. You feel like it will eventually escape from prison and wreak havoc all over again.

Being free is when you have no further contact with something or someone that was holding you back or bringing you down. That burden will no longer be in your life at all. You have cleansed yourself of the negative energy and moved on. Not so much with cancer.

Before this all happened, when a mystery ache or pain would hit me I would just think it was a strained muscle, or maybe bad posture was the culprit. “I must have pulled something or slept wrong”. But not now.

I remember right around Christmas, about 10 months after I was diagnosed and treatment had ended, I started to get this awful pain in my left arm. If I reached into the dryer to pull out clothes, the pain would shoot up my arm and it was more intense than anything I had ever felt. When asking the doctor how I would know a pain could be metastasis (mets), she always said look for new pain and pain that was different from anything I had experienced. Well this was both of these things, so I was pretty much convinced. I told my doctor who then ordered an MRI. She didn’t think it sounded like bone mets, but I didn’t believe her (I have had medical professionals tell me the wrong thing before, so this could be no different). I was a nervous wreck, Googling bone mets and where they can land. Large bones were mentioned. Shit.

I was already prepping myself for more rounds of chemo and possible death.

After waiting what seemed like a year, the test determined that I had frozen shoulder which would eventually go away with a shot and stretching. I couldn’t even believe that it wasn’t mets. A relief for sure, but I wondered when the next scare would come.

I got my routine blood work at my 3 month check up a year later. My liver enzymes were high again, a little higher than they had been. The doctor said, “I really don’t think it’s anything cancer related because your enzymes had gone up and down before cancer, but we will have it checked out.”

Hi ho, hi ho it’s off to another test I go. Only I wasn’t singing and whistling. The waiting, the thinking about how I will handle the grim diagnosis when it comes. Again, I was prepared for the worst news. I wouldn’t be caught off guard again.

Results were in. They found nothing. Whew.

What a freaking rollercoaster ride. Any time I have an ache or a pain, the logical side of me tells me that there is a reason for it and it’s not the pain she said mets would be, but the scared me goes to the dark side. I usually talk myself down off the ledge or call someone to help me with that. Eventually the pain eases and I know it’s not mets. This time.

PTSD doen’t only haunt people who were in combat. It strikes people that have had a health crisis too. It’s not a loud noise that scares me, it’s a new pain. Or feeling off. Or feeling nauseous or tired. Those things give me nightmares.

At our meetup last weekend, we were talking about the whole cancer free thing. I was asked “how do you respond when someone asks if you are now cancer free?” I never know what to say. I usually say something like “for now” or “as far as I know” or I just shrug my shoulders. You just don’t know for sure if there is a cell swimming around in there waiting for a place to call home. You don’t know for sure if that stiff neck is just from bending over a computer all day or if it’s something serious.

People that have had cancer will never be free. But hopefully, as the years go by, we will stop panicking over every pain and move on. Maybe this fear will be a thing of the past.

 

 

 

 

Just be.

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image This past weekend, I had the pleasure of being with 4 amazing women from my support group “The Chemo Sabes”. Cancer made us sisters. But love and laughter makes us friends.

Thinking of how people come into your life and how things happen is quite mind-blowing. It is hard for me to believe that these women were not in my life at all BC (Before Cancer). 3 years ago I did not know them, but I feel like I’ve known them forever. They are part of the reason that I would not change a thing about what’s happened to me.

People meet in all kinds of ways, in all types of situations. At work. At the gym. Through their kids. At school. And during chemo. We’ve been through hell and back and thanks to technology, we got through that hell together. Say what you will about the evils of Facebook, but without it we would not have this bond and friendship. The Sabe Sisters (we dumped the chemo from our name when we were finished with treatment) span the country-and the globe. From Seattle to Pennsylvania. From Hawaii to New Zealand. And with Facebook we were able to be with each other at all hours, day and night. When I was on the couch, so sick that I couldn’t really do anything other than go to the bathroom, they were there, always ready to comment on a gripe. Some of us had it worse than others, but we all had our ailments. From battered nails to bloody noses. Stomach pain to bad skin. I could always count on chatting with someone that could relate.

A little over 2 and a half years ago we were all in that fragile state, watching the outside world go by while ours was on hold, but we had each other. When I was so depressed that I couldn’t enjoy good food or going on fun trips, I knew that my sisters were out there too, feeling the same way. While you don’t wish this on anyone, it does help to know you aren’t alone. It is amazing that many of us are still close, and have formed true lifelong friendships. We went from gagging on water on our couches to sipping Chardonnay on the deck watching the sun set over the water. From sitting in the chemo chair while the medicine flowed into our bodies to sitting around the breakfast table with our mugs of coffee, watching the sun come up and chatting about how Jan is about to embark on something exciting in her career and about Anita’s recent trip to Australia. From being in bed early feeling sapped from treatment to looking at the moonlight reflect on the water on a party barge singing RESPECT at the top of our lungs into the night. We aren’t dwelling on our cancer, we are celebrating the “gifts” it gave us. I can say that now that I am out of it.

Sure, we talk about the nasty c. That’s what brought us together. No one gets it like us. We know more about each other than most people know. Intimate details of the worst times of our lives. So yeah it does come up. And that’s okay. But it is no longer the only topic of our conversations.

Thinking about my weekend I can’t help but smile at the highlights:

Tina and I sharing a guest bedroom with 2 twin beds, watching old Duran Duran DVDs and feeling like we were back in high school, talking into the night. I feel like we have been friends since high school and we’ve only known each other for a couple of years. We were meant to meet for sure.

And just watching Anita dancing in her seat and singing to the music and having a GOOD TIME. Not drunk on wine but high on life.

And hearing Jan talk about the passion she has about her job and the work she does now and hopes to do in the future as she prepares to run for office. And “meeting” her precious children on Facetime.

And seeing Susan in her element at the lake–I got a glimpse of how much she thoroughly enjoys life all the time with her family and friends. We should all live like that!

I sat back and soaked it all in.

We are living our lives again.

I hope that one day more of our sisters can get together with us at these gatherings. They are truly inspiring. I still haven’t met all of the girls, but I hope to one day. It’s funny when you finally meet a Sabe that you only knew online. You just feel  like you are hugging a friend you haven’t seen in a long time.

I am happy to say the sun is shining. Again.

Looking at life through pink colored glasses

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Let me start off by saying that while I am very open about my cancer diagnosis and health situation, it is still really hard to share some of the “gory details” unless I am talking to someone in one of my support groups or a close family member. It’s sad to admit that, but there is still a level of embarrassment I feel because of where this cancer was–the ta-tas. Writing this really puts it all out there for all to see and this is kind of new for me at this level. I did a Caring Bridge journal, but I didn’t even share my diagnosis in the Facebook world when I was in the throws of treatment, only a select group of people knew what I was dealing with. And forget about posting bald pictures. I just love the women that embrace it and own it. But I was not that person.

I remember sending a few of my closest friends a bald pic one day in a text, telling them to delete it immediately after seeing it. It was like an action spy movie– I wanted the message to self-destruct in 3 seconds. One friend said that I have a cute little head. Most women will never see themselves that way, and as I sit here it is hard to remember those days, where I had to wear a wig and a hat all the time, even to bed because my head would get cold. You don’t appreciate hair that much until you lose it. I now find myself playing with it, stroking it to feel how silky soft it feels, smelling it and inhaling the delicious smell of a fresh shampoo. Because I CAN. I still go back and forth about posting the Mr. Clean look here in my blog. We’ll see. It is just so hard for me to see myself that way, looking sickly, though I know it was necessary to get me to where I am right now. Alive.

I believe in intuition and gut instincts. My mom, working for oncologists for most of her career, always harped on me to do self-exams through the years. She even gave me a fake boob (a foob), made of squishy rubber with hard little lumps in it to practice on. Even well before my 40s she stressed the importance of this, telling me that you could get it even when you are young. So I got to know my girls pretty well.

I was always well-endowed. And dense. And lumpy. And always had this odd feeling that one day I was going to get the dreaded C. And I did. I just thought it would be years down the road from now maybe in my 60s. Not when I was 44. I always wondered when my time would come. I guess that’s why I never asked myself the “Why Me” question, I always asked “When Me”. Even though I had a feeling those ta-tas would cause me the ultimate grief, I was still in complete shock when it happened.

I’ve never been fond of my “jugs”. Being bigger on top meant that I could not wear some of the cute tank tops that I would see friends wearing in the summer. Being bigger meant if I wore something a bit tight, I would get comments, ogled at, pointed at and yes, called names. So I became very self conscious over it, covering myself up with baggy clothes and turtle necks. I always said I would love to get rid of them. Well,  I did get rid of them. Completely. Maybe they were pissed off at me for not showing them much love over the years, I don’t know. But I have a new set and quite honestly, I really like them! Out with the old, in with the new. I don’t have to go for mammograms any more and that is huge. The first time I went for one after this all happened, I had hot flashes, felt like I could not breathe and was having major heart palpitations. PTSD. I get it any time I go to a doctor now, but to get the mammo again was pure agony for me.

October is Breast Cancer Awareness Month. Women need to be aware and check themselves along with the mammos. I found mine myself, because I had that little mom-voice in my ear telling me to always do a self-exam. But I feel that this month should not be just for talking about breast cancer. If you are one of those folks that just does not go to a doctor, you need to start. Get the dreaded tests, as crappy as they are, that come with age. If you think something is off, your gut will usually tell you what to do. Mine did.

Along with this month comes a lot of pink stuff. Friends of mine that have gone through cancer have mixed emotions on this. Some do the walks waving pink survivor flags wearing pink from head to toe, while others call it “stinktober”. I don’t participate in all of the pink activities but I am not against them. I just wish there was more awareness about other forms of cancer, more focus on metastatic cancer, and focus on rare illnesses that don’t really get any attention. I don’t walk around in a pink haze. I don’t go out and do the events. And pink is my least favorite color. But I am writing about it. And if that helps just one person, I’ve accomplished something.

Of course, I have to end my blog with something Duran related (because that’s what I do). So in honor of this month, here is a song called Sekret Oktober. I am going to make you non-Duranies fans, you will see!