Category: coping with illness

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!

 

 

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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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.