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?
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.
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.
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.
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!
What has happened to it all?
Crazy, some are saying
Where is the life that I recognize?
Gone away
But I won’t cry for yesterday
There’s an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive…
Ordinary World
Duran Duran
I’ve been going back through my Caring Bridge journal entries to get material for this writing project. As I sit here, I know this happened to me but as I read some of the posts, it kind of feels like I’m reading someone else’s story. Although I just had my second surgery to put myself back together and still have doctor appointments every 3 months with the Oncologist, it all seems surreal. I think sometimes that I was keeping a stiff upper lip during it all and not letting it get the best of me, though at times I was scared shitless. But for the most part, I was strong. Stronger than I ever thought I’d be.
One thing that happens when you have cancer is you immediately miss your boring and uneventful life. You miss being a normal person– that is gone and now you are classified as someone with cancer. You are someone with a disability. And you never thought it would be you.
You miss the everyday routine things like lying in bed at night watching TV and laughing at an old episode of “King of Queens” before going to sleep. You miss bad traffic in the morning. You actually miss going to work, even if it’s a job you hate. You are jealous when you see others laughing and happy, because you are not. You miss the days when you complained about stupid stuff like endless laundry and kids shoes scattered all over the house.
I bought my kids their Valentines early, before any of this happened. I was at Target one day in early January and saw the candy, cards and plush on the shelves, thinking it was too early (I mean, Christmas was barely over), but I decided to get some things anyway since I was feeling festive. I put it away in hiding, having no idea what would change in my life between then and Valentines Day. It’s funny how you just assume in a few weeks, nothing will be different and you will just be celebrating a holiday with your kids like every other year. Here I was be-bopping along with my life, doing things like picking out candy and running to the post office. All while I had cancer growing inside of me, trying to kill me.
Trying to keep normalcy about everything, I helped the kids make their Valentine boxes for school and took them to the movies to see The Lego Movie. The song “Everything is Awesome” played over and over and that was all I could hear, I couldn’t even focus on the movie. How could everything be so freaking awesome when my life was such complete shit? Ironic.
This post is from the beginning of the cancer chapter of my story. I guess finding the humor in these things is the only way to go.
Journal entry by Kelly Dobrowolski — 2/17/2014
Well I went for my Pet Scan today. For those of you that are not familiar, it basically shows if this nasty Cancer is anywhere else in my body. Nerve wracking to say the least. Waiting for these results has me a bit anxious, but I have to think happy thoughts. I was cranky when I went in because I hadn’t eaten since 7 am and they delayed my appointment because they were running behind. So I was famished and caffeine deprived, and then given a huge container of banana “smoothie” liquid chalk to drink. UGH. The only highlight was that they put me in a private room with a comfy recliner, dim lights and a TV while I waited for my turn. I almost fell asleep it was so peaceful. Getting the test is kind of strange–they fasten your head so you don’t turn it and your hands are fastened to the table. Kind of felt like I was the subject of some sci-fi experiment.
When I went to pick up my kids, my mother in law had a big steaming bowl of pasta and a salad waiting for me, and boy did I eat! I think that’s the most I’ve had since I got this news.
So there are a few things that have happened so far that I just think are entertaining. I will share.
The report from the mammogram I had on February 5 states the following:
Findings were discussed with the patient in detail. The patient wishes to have this biopsy performed as soon as possible, however, did not want to have it performed today as she wanted to sleep with her husband.
FUNNY. What I said is that I wanted to talk to my husband, so not sure how that got mixed up. My mom says we can fix it, but I don’t know, I kind of like it the way it is. It is something that would happen to only me. And it made Michael and I laugh.
Right after I found out (he didn’t know anything at the time) my son Luke was whining about his runny nose, yelling that he hates being sick and it isn’t fair. Then he stomped out of the room yelling “I wish being sick was never invented.” True that.
Two “Happy New Year” balloons I bought the kids are still floating in the kitchen. I thought about going all crazy and stabbing them both with a kitchen knife, but I decided to let them float. The way I look at it is this may not be the best year of my life, but I have confidence that it will turn out happy in the end.
When you are going through cancer, or anything else traumatic, you don’t think you will ever see normal again when you are in it. But as I sit here, I am watching TV and laughing, annoyed at the kids shoes that are not put away.
If I had the choice, I would have cancer all over again.
That might seem completely ridiculous to you, but honestly it’s true.
Because I am working on this blog and my book, I’ve been forced to reflect on the last couple of years of my life and pull out memories — some bad, some good. I’ve been thinking of all the people I’ve met and grown close to because of this crappy disease, thinking of how much more I am enjoying life than I used to. Cancer also taught me a lot about myself–what I truly want to do in life, where I want my life to go. Right before I was diagnosed, I was in a classic RUT. I was so tired of being a spectator in life, a Facebook junkie, that would peruse other people’s lives and wonder why mine wasn’t fulfilling. I would see what other people were accomplishing, whether it was running a 5k, or landing a great new job. I wanted MY thing that made ME interesting. But I just couldn’t figure out how or what I truly wanted. And how to get there.
I have a great husband and family. I adore my kids more than anything in this world. I have a decent career and we live a comfortable life. But I still felt something was missing. I’ve always wanted to write a book, and a blog, but just wasn’t feeling the story. All the soul searching I was doing wasn’t getting me anywhere. Then BAM. Cancer came and while it was living hell, it changed so much in my life. For the better. As I sit here writing and writing and writing, I know that had to happen for this to happen.
Now, I want to make sure I note that while I’m happy about where my life is headed and a lot of it is because I went through a health crisis, I do not want that nasty C thing back ever again. And I don’t plan on it coming back. I despise the word cancer and what it has taken from so many people I care about. I hate the PTSD that I have to endure on a regular basis. Yes, cancer survivors have PTSD. And it sucks.
When I found out I had “nasty C thing”, I sat in bed and searched frantically for blogs, sites, anything I could read that would help. I stumbled across breastcancer.org and saw that there were chat boards where you could discuss things with other women in your situation. This was new territory for me, reaching out to complete strangers, but I needed to talk to someone that actually knew what I was feeling, not someone giving me advice or trying to comfort me with words that actually made things worse. Like the one time someone at work said, “My cousin had breast cancer. She died. But that was because she waited too long to get it checked out and she was advanced. But you-you caught it early!” (Yes, someone did actually say this to me, believe it or not. But I know she meant well…)
One day on the breast cancer site, someone posted that she was brand new to the site and starting chemo in March. Perfect, because that was going to be me too. Brand new to this hell ride with the chemo exit fast approaching, I started chatting with her. One by one our chemo group started to grow and it was becoming more difficult to keep up with the posts, so someone suggested we branch off to a private group in Facebook. And we’ve been friends ever since. From across the globe as far as New Zealand, and all over the US, women connecting and helping each other. We were talking each other off ledges, giving each other advice, listening. Only knowing each other through the world wide web, through typed messages and emoticons, we were still building a special bond just the same. As of today, some of us have met, but many of us have not. But I feel like I’ve known these women forever. I would have never had honor of meeting them, had I not had cancer.
We were doing this little thing in our group where we featured one person for a week, and that person would answer a questionnaire and share photos etc. It was a way for us to get to know more about each other on a personal level, vs only talking about “nasty c” This was so cool, because it truly showed how different we all were. One girl– an avid motorcyclist, one an environmentalist. There was a new mom who was pregnant while going through chemo. A world traveler. Some of these women had such amazing and interesting stories, that when I posted mine, I felt that it was a little, well, boring. Of course I mentioned my love for Duran Duran in my post, I had to. Tina reached out to me immediately when she realized we shared this love in common.
I met Tina about a year after we started chatting in the group. She was visiting San Antonio, so we went to lunch. I had only talked with her online at this point, but it was like lunching with an old friend whom I hadn’t seen in ages. I now understood how people could online date and fall for someone without meeting face to face! She was so much like me and I knew if she could ever meet my other friends they would click too. I knew this was more than a support group member, this was a lifetime friend. After meeting in person, Tina and I would talk a lot on the phone when either of us was having a bad day, or a PTSD moment, or just needed to vent. She had also been a recruiter, like me, so when I was having job issues she was the ear I needed, and she kept me sane.
We always said if Duran Duran went on tour we would meet up again and see them. At first, there were hardly any tour dates, so the likelihood of going was slim. But then we got word that they were adding dates for North America, we immediately got on the phone and started the planning. We decided Vegas was a good choice. Austin was near me of course, but it was too close to one of my major surgery dates and I could NOT risk not feeling well enough to go, so that was out. And Vegas was my birthday weekend, another bonus. It just was meant to be. I immediately called my best friend and “sister” Paula who has been with me through thick and thin and a Duranie since the 80s and pitched the idea to her. I thought how amazing it would be for her to meet Tina and have this weekend with such special friends. She was in. She was in need of a girls weekend like I was, so it didn’t take much convincing. And remember, she was not able to go to the 2005 concert because her dad passed away, so this would finally be our night to shine.
This trip was planned in January and I could hardly stand the anticipation for the months leading up to it. I searched high and low online for the right shirt we could all wear and I found it, “Duran Crazy” it said with John’s picture splashed on the front. Perfect, I thought as I placed 3 in my Amazon Prime cart. We all had to match after all!
This trip meant so many things to me.
A long awaited weekend getaway with an old and dear friend, my Bestie. We had done mini weekends in Florida before, but this was different. We were going somewhere away from kids and obligations. And it was a long time coming. We needed this time to reconnect, to bond.
It meant a reunion with Tina, who I considered a dear friend but had only met in person once, just for that lunch. Only this time it wouldn’t be a 2 hour conversation about our cancer experiences it would be FUN.
It meant a reunion with another member of our support group, who just happened to be in Vegas at a conference at the time, someone that Tina hadn’t met in person before.
It meant a trip down memory lane–Paula and I were going to see an old high school friend from the good old days, simpler days when life’s biggest challenge was picking which bar you would go to–would you stay in town and go to Joe’s and sing Wham at karaoke, or would you venture out to Albany where the bars were a bit cooler and people more interesting? Kent was a blast and I knew we would have lots of laughs again. And we’d meet his wife, also a Duranie!
This trip meant a new beginning.
When I got off the plane and waited for my luggage, I heard the loud dance music playing, signaling I wasn’t just anywhere, but in VEGAS. Right there as I watched the bags going round and round the carousel, I got emotional. I was excited to see Paula and get the weekend started, I was excited to see Tina and introduce them, and I was excited to see my boys. I had to fight the urge to bawl as I pulled my bag off the belt.
Tina had brought her cousin Samantha and all of us immediately clicked. It was like we were all old friends that hadn’t seen each other in a long time. As we clinked our champagne glasses and toasted the weekend, I forgot all about cancer. ALL ABOUT IT.
When we got to the Mandalay Bay, we were all beside ourselves. All decked out in our shirts, buzzed on drinks and high on seeing Duran, we were having the time of our lives. The opening act was incredible, Chic put on one hell of a dance party. The songs “We are Family” and “Good Times” pretty much summed up the weekend. And Nile Rodgers talked about his cancer diagnosis and how he was told to get his affairs in order. But he survived and has been cancer free for 5 years. Filled with emotion I screamed out in support. F U cancer!
When the lights went down signaling that Duran Duran was about to start, I was still out in the lobby area coming back from the restroom. I went into full on panic mode. I couldn’t miss the opening song! I frantically pulled my ticket from my purse, and ran to the first entry point I saw, not even checking to see if it was my section. Nope. “Your section is down that way,” the attendant said pointing down yonder. He could see how distressed I was, so he let me in and I ran at top speed to get to my seat. JUST IN TIME. The thunder and lightning effects started and the lights finally came on to reveal DURAN DURAN.
I sang at the top of my lungs. I screamed. I cried when they played Ordinary World, Come Undone and Save a Prayer. So many emotions and feelings came over me at that show and it was the most amazing feeling. I was saying goodbye to the past and “nasty C” and hello to my new life. I was reliving some of the good times of my past through songs like The Reflex, and creating new memories and letting go with new ones like Pressure Off. This was my movie soundtrack.
I’m not gonna sleep tonight
Till the morning fills the sky
No one’s getting left behind
This is our time
This is our time!
We’re gonna live this night, yeah
Live it like it’s our last night
I just knew in my gut something wasn’t right. There was a lump that wasn’t supposed to be there, things just didn’t feel the same as they usually did. My intuition told me that this was something to have checked out, even though I just had a “clear” mammogram six months prior, so I called to make an appointment. The receptionist gave me a date for two weeks down the road, and I surely wasn’t going to wait that long, so I asked if there was anyone else I could see. She scheduled me with a Nurse Practitioner and assured me that she knew her stuff–she had been doing this job for 25 years. Sounded good to me.
As she examined me the next day, she said in a very calm, matter of fact voice, “I am almost positive this is just a cyst, by the way it feels. I will still need to send you for a diagnostic mammogram, but I’ve been doing this for a long time and I just don’t think it’s cancer, and I wouldn’t say that if I wasn’t pretty sure.”
Whew. What a scare that was. I felt such relief at that moment, all the fear that I had washed away and left me feeling good about the situation. I could deal with a cyst, even if surgery was needed to remove it. Piece of cake.
I left the doctor office, imaging orders in hand and rushed to my car. I called my husband to let him know there was nothing to worry about. “See, I knew that couldn’t be a tumor already when you just had a clear test.” My husband replied. He is not a worrier, never gets worked up over anything, so when I was freaking out the night before he assured me that it was probably nothing. I always hate it when he’s right, but this time I was happy he was. I then called the radiologist office and they had an immediate appointment available, so I could go right over. That worked perfectly, since I already had the afternoon off from work. “Thank God I can just do this today and be done with it,” I thought as I drove to their office.
They say hindsight is 20/20. Boy are they right. As the technician was taking the pictures, she had the most solemn face I’d ever seen. She was borderline frowning. I thought it was interesting, but I figured it was just her demeanor, I had no idea at the time that there was actually a reason behind it. She took picture after picture after picture. Turn this way, stand straight, hold your breath. A little more intense than the mammogram I had six months ago, but I just thought at this point it was all part of it being “diagnostic” and not “routine”. They just wanted to get different angles and views for my medical file. I still thought I was dealing with a pesky cyst.
I was told to get dressed and have a seat in the waiting area for a few minutes. I should have started to suspect something was up because they weren’t sending me home with the usual, “we will send the results to your doctor and they will contact you” but I was still in the dark. I had no worry, but was getting a bit irritated that this was taking so long. “The radiologist would like to speak with you now,” the technician said with a pained look on her face. I can see it all so clearly now, but in that moment I just thought they were trained to keep a neutral face when dealing with patients. “Hmm, meeting with the radiologist must be protocol when you have a diagnostic mammogram”, I thought as I walked down the hallway. When I entered the room I smiled to the radiologist and sat down, still CLUELESS. The room was very dark, only the light was coming from her computer monitor and the other screen displaying the images, casting an eerie blue glow in the room. She started talking and I zoned out for a bit, just wanting to get this over with so I could go pick up my kids. “See, this is your image from 6 months ago. And this one is from today. You see this shaded area is new, wasn’t there before. And looking at the shape and the edges, and by the way it looks, this is highly likely to be cancer and I know that is not what you were expecting to hear.” I was stunned, sure I didn’t hear her right. I replied, “What? What does that mean?” I was confused. I thought I had a cyst. She offered me a tissue, I guess because she expected me to start falling apart. “I am not 100% sure, the only way to tell is to have a biopsy. But I am pretty sure it is.” I just sat there in silence. I couldn’t process what I was hearing. “Would you like to see about having the biopsy today?” she asked, sensing I might need that confirmation sooner rather than later. My husband wasn’t even with me, I was alone. And I couldn’t even comprehend what she was saying, I was in shock. “No, I will come back with my husband.” I replied. At this point, I couldn’t wait to get the hell out of there. I didn’t know what was happening to me. She handed me a business card in case I needed anything and I left. I sat in my car for several minutes before calling my husband then my mom. I wasn’t bawling at this point, I was in too much shock and disbelief for that. My husband’s reply was filled with anger, “She shouldn’t have said that to you, you haven’t even had a biopsy yet. You don’t know for sure and she shouldn’t scare you like that.” Again, my husband is not a worrier and still didn’t think I should get upset until I had the biopsy. My mom, having worked in cancer almost her entire career first in records, then as a nurse, was calm but I could tell by her voice that she was worried about it because she knows too much about cancer.
I believe there is a reason for things happening the way they do, and my mom not only has a lot of knowledge about cancer, chemo, radiation, but she actually worked in San Antonio for a while for a cancer center before moving back to Florida. So she was already in action mode by the end of the call, recommending doctors and planning who she would contact for some advice and information.
Contrary to my husband’s theory, I knew deep down the Radiologist was right, but in an attempt to make myself feel better I pulled the card from my purse and looked up her name to check her credibility. Maybe she went to some no-name school and wasn’t really the best at her job. Harvard. That was all I needed to see. The next day I got the biopsy and felt this was really not necessary. I had cancer, no additional testing was going to change that.
When I went back to the doctor to get the “official” biopsy results, I was prepared for the news, or so I thought. The Nurse Practitioner that told me it was a cyst called me and walked my husband and I back to the doctor’s office. Her face told me everything. I could tell she felt incredibly bad about giving me false hope and her eyes said she was sorry without her even saying a word. I could have been mad and screamed at her, but everyone makes mistakes.
When the words came out of the doctor’s mouth, I immediately thought of my 2 boys and that I was going to die. You don’t know anything when you are diagnosed, only that the word cancer is an ugly one and people die from it. I was advised to go see the nurse navigator for more information that she could help me sort things out. That meeting saved me from completely losing it. She took my hand and said in a soothing voice, “you are not going to die. You will have chemo, surgery and likely radiation to treat it.” Then she told me she would make some appointments for me with a surgeon and the oncologist, handed me a book to read and gave me some diet and vitamin suggestions. I heard what she was saying, but the only thing I could focus on was the word CHEMO. My mom had worked around chemo patients for a long time. I immediately thought of her stories of women puking, so sick they couldn’t even sit upright. And my hair. My thick, long hair. It would fall out.
I still thought I was going to die, despite what she said. Nights were the toughest. I was having nightmares in reverse. I would lie in bed in the dark crying and thinking of all that was to come and the what ifs–what if the intense treatment didn’t work and I would be left wasting away and then leaving the young boys that meant so much to me. I would fall asleep with these fears raging through my mind, but then would be in a happier peaceful place for a while, dreaming of normalcy and happy things, only to wake up and realize I was in the nightmare again. Nightmare was reality. I would cry out “I just want to be normal again. I just want life to be boring again.”
The first few days after you are diagnosed with cancer are the WORST. You haven’t really met with your medical team yet about the plan, so you have no idea what is going on, what your chances are to survive. And you are sent for test upon test to see if it already spread, to see if you are Stage 4. PET scans, MRIs, bone scans. It is the scariest thing you can go through and waiting for your results are unbearable. You think of all the movies you’ve seen where the lead character gets cancer (when you have cancer it seems EVERY movie ever made has a character with cancer) and dies and everyone is sad. You think that will be you.
I drove to work during those days in complete silence, which is not like me. I always listen to music to charge my batteries in the morning. But I just wanted silence so I could think. One morning I was in the shower and I was terrified. I started crying and I begged for some sort of sign to tell me it would be okay, that I would make it. I pulled myself together, got ready and drove to work, and half way to the office I decided to turn on the radio. I hadn’t listed to anything in about a week, so I had no idea what would come on, what was in queue. I pushed the on button and my favorite band came on, the song was fading out and ending. The next song, “What Happens Tomorrow”, started and at first I couldn’t remember it too well because it had been a long time since I’d heard it. It was a bit slower than what I was in the mood for, so I almost skipped over it to hear something really upbeat and cheery but something told me not to. As the song unfolded and I listened to the words, I got the chills. This was my sign. The words told me everything I needed. And from a band that brought me such comfort through my life. Amazing.
Duran Duran has always been there for me. And this time they proved they would be there again. My guardian angel was watching out for me that day, and it wouldn’t be the last time he or she sent me comfort through Duran Duran.
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.
Durandipity 