Tamoxifen Rage!

October 2, 2013

current mood:  frustrated

I only have one question, why is it that no one told me about Tamoxifen and the possible side affect of mood swings… 

Sure I was told by my Oncologist that Tamoxifen may cause hot flashes, weight gain, headaches and other “fun” stuff but she never mentioned mood swings. 

Well lately I have been out of control with Tamoxifen Rage.  You could look at me the wrong way and I could go off on you.  My poor boyfriend has taken the brunt of most of my rage.

The sad thing is, I know when I'm in my Tamoxifen Rage that what I’m doing and saying is wrong and hurtful but yet I can’t control myself.  It’s like I’m possessed by the Tamoxifen.

Well needless to say my Tamoxifen Rage caught up to me this past weekend.  Yes, once again I was possessed and said things that I’m not proud of. 

We (my boyfriend and I) talked and tried to figure out why I was so unhappy.  Everything kept coming back to the Tamoxifen.

So like everyone else that wants to know something we turned to the computer and "googled" tamoxifen and mood swings.  We found this amazing blog where a woman I swear was describing me to a tee.  She called it tamox-rage.  The inability to control what comes out of your mouth.  My boyfriend just gave me a look as we both knew that was me. 

She also talked about muscle and bone pain.  Funny, I have had achy hips since late March, early April.  Hmmmm, I started the tamoxifen in February.  As for the muscle pain, there are days it hurts just putting my body lotion on.  Hmmmm!

So I made the decision to stop taking the Tamoxifen for 1 month (with the blessing of my Oncologist) and see if “Happy Jill” returns and to see if my aches and pains go away as well. 

Would love to hear from my B/C Sister’s …have you taken tamoxifen and if so, did you have Tamoxifen Rage?

I've lost my one true constant in my life...

Friday, August 2, 2013

current mood:  lost and lonely

My thoughts are so scattered as I write this…

I think my friend Michelle summed it up pretty well in a message to me on FB.  Maddy has been the one true constant in my life for the past 14 years.  Those words are so powerful and so true.  I have been through so much in the past 14 years but the one thing that has always been there has been Maddy’s unconditional love.  Her wagging tail as she greets me at the door.  My apartment is so empty without her.  Her favorite spot on the couch is bare.  Her water bowl and food bowl are now up in my cupboard.  Her collar and leash still sit on my kitchen counter and will remain there until I’m ready…

Will I ever be ready?  Does this pain ever go away?  Will my tears ever stop flowing?

Making that tough decision, you know the one that no one wants to make was the hardest thing I’ve ever had to do. 

I held her in my arms like a baby, with her head to my chest.  I was  uncontrollably crying and she did what Maddy does best...she picked her head up and licked away my tears.  I couldn't believe even at the end she was still trying to comfort me.  I strongly believe that was her way of letting me know that it was OK to say goodbye.

After she was gone I put her lifeless body on the table and wrapped her body with a towel, except her head.  I was still petting her.  I sat with her and just talked and told her how much I loved her.  I found myself not wanting to ever leave.  I felt like I was abandoning her.  I called my Dad and told him that.  He reassured me that I had done the right thing and that I wasn't abandoning her and that I needed to stay as long as I wanted.   I tried to leave three different times and each time, I went back and knelt down at her lying on the table.

 I did at one point take a picture of her paw.  I found myself caressing the pad of her paw.  I used to love to do that to her when she was lying on the couch, even though I knew it drove her crazy.   That was the only picture I took.  I've decided that her paw print is going to be my next tattoo.

I remember the day I got her.  It was 4^th of July weekend 1999.  It was really supposed to be my Dad’s puppy but he had changed his mind about having two dogs.  I had just bought my house at the end of April and to be honest with you wasn't too keen on the idea of a new puppy and all the fun house-training that it entailed.  But my Dad convinced me and that’s where Maddy and I’s adventure began…

It’s funny cause when we went over my Aunt’s house to pick her up, she was the only puppy left so she was among 4 or 5 adult dogs and she didn't seem very playful.  I remember telling that to my Dad and boy did I jinx it.  Maddy was beyond playful once I got her home and her puppy years lasted well into her 4th year.  I think then she finally started to calm down.

I used to do and bring Maddy everywhere with me.  From rides in the car to vacations.  She has been on every mode of transportation…car, train, subway, boat and air plane.  It’s sad to say but sometimes I think she’s lived a better life than some children. 

Maddy has been with me through all of my life’s ups and downs.  All the joy and especially was there for the sorrow.  She licked my tears when my Mom passed away and then a few years later she licked the tears away again as my Grandmother passed away.  She loved me unconditionally and never judged me during my cancer treatment and never looked funny at me with my bald head.  As a matter of fact she liked my bald head and liked to lick it. 

She never complained when I chased my dream and moved to NYC.  She never questioned where the green grass went and why she had to do her business on the concrete jungle. 

I loved packing up a lunch, her portable water bowl and a blanket and heading to Central Park.  We could spend hours at the park and both of us would be content.  I would catch up on my reading and she would people watch and just be happy to see green grass. 

She loved visiting my Step-Dad at the Lake House.  She would kayak with me and loved to go in the water.  She also loved to chase the ducks.  No ducks were allowed on the beach in front of the house, not on Maddy’s watch.

Later on in life she was diagnosed with Addison’s Disease.  It took a toll on her body before we finally got her stabilized and diagnosed.  I learned to give her percorten shots every 23 days.  I would do anything for my Baby.  After all she was there for me through my cancer crapness, now it was time for me to be there for her.

It was tough watching her get older.  Her hearing had just recently starting getting really bad and she had some night blindness.  But it didn't matter to me.  If it meant our walks in the morning took a little longer, I simply adjusted my morning alarm.  If it meant putting more lights on in my apartment so she could see more easily than that’s what I did.

Maddy was a true blessing in my life.  I am privileged to have been the owner of such a sweet dog.

I will miss her every day of my life.

I will see again Maddy, at the Rainbow Bridge.    

Toughest Decision I've ever made....

May 20, 2013

current mood:  jealous
  

I was watching Dr. Oz the other day and he did a special on women who have the BRAC 1 gene.  Some women chose to take action and some are too scared to have the surgery. 

The reason why most of them were afraid to have the surgery was the fear of losing their femininity. 

I know first hand about that fear.  I still live with it every day.

I was tested for the BRAC 1 gene and even though I thankfully did not have the gene, I too opted for a bi-lateral mastectomy.  Taking the healthy breast was the hardest decision I've ever had to make.  But at the time it was a no brainer.  The cancer was VERY aggressive and in the words of my breast surgeon, it would only be a matter of time before it attacked my healthy breast.  I didn't want to go through chemo a second time and the reconstructive surgery I opted for, the DIEP Tram Flap can only be done once so for me the choice was made, take the healthy breast.

The fear of losing your femininity for me was so difficult because I was single at the time and my biggest fear was how the hell am I going to date after this.  Who is going to accept me for who am and love me for me and not the fact that I don't have real boobs.

I posted my current mood for this blog as jealous because I am so jealous of the new procedure that is now out there for women facing breast cancer.  The new nipple sparing procedure is so beyond amazing in helping to prevent that fear of losing your femininity.

I know for me the breast that was affected by the cancer would not be able to use this procedure because my nipple did test positive for cancer as well as the breast tissue.  But this new procedure could have been used when taking my healthy breast. 

It's amazing how much has changed in just the short 6 years since my diagnosis.

Thank you to all the amazing surgeons who are making this new procedure possible and helping my sisters feel a little bit better when they are faced to make their difficult decisions.

And thank you Brad for supporting Angelina in her difficult decision as well.

I love Brad Pitt's quote....

"Having witnessed this decision firsthand, I find Angie's choice, as well as many others like her, absolutely heroic," Brad Pitt said in a statement to London's Evening Standard. "I thank our medical team for their care and focus.

"All I want is for her to have a long and healthy life, with myself and our children," the actor continued. "This is a happy day for our family."

Madeleine Maris AKA Maddy

Saturday, May 4, 2013

current mood:  reminiscent


I can’t believe my Baby is turning 14 this coming Tuesday.

Madeleine Maris…

I remember the day I brought her home, like it was yesterday. See Maddy wasn’t really supposed to be my dog, she was originally going to be my Dad’s second dog. Maddy is my Dad’s dog’s puppy. When he changed his mind about having two dogs, the idea of Maddy becoming mine was given to me. I have to admit I wasn't too keen in the beginning. I just bought my first house and wasn’t quite ready for a puppy. Yet, the more I saw her, the more I fell in love. So 4th of July weekend, 1999, I brought Maddy home.

I guess I should start off my explaining how I chose her name. Maddy was named after Madeleine Albright. For those of you who don’t know your history, she was the first woman Secretary of State. Maris is in honor of Roger Maris. The story behind that is…like I had mentioned earlier my Dad was supposed to keep her and his name for her would have been Maris and yes my Dad’s dog’s name was Micki (spelling for a girl) named after Mickey Mantle. Yes my Dad loves his NY Yankees.

It’s funny cause the day I went to pick her up, she was the only puppy left among 5 or 6 adult dogs and she didn’t seem very playful. I remember telling my Dad that and boy did I jinx myself. Maddy was more than playful in her “puppy” days. She was a handful until she was about 6.

Over the years I would bring Maddy anywhere and everywhere dogs were permitted. She was the adventurous Bichon Frise of the family. Yes, everyone in our family has a Bichon thanks to my Aunt Gloria who is the one that breeds them.

It’s sad to say but I do believe Maddy has a better life than some children out there.

She’s traveled with me on vacations. Yes she’s been on an airplane, a train, a boat and of course been in a car. She’s learned to change with my new adventures in life too. She went from having a BIG backyard in our house in CT to having to share a yard in our Condo in CT as well. She adapted pretty well to the move to NYC and quickly learned to “do” her business in the concrete jungle. And I haven’t heard her complain about her new apartment in Florida. I think she enjoys the mild winters.

We’ve been through A LOT together! She’s seen me at my highest highs and she’s been there at my lowest low’s , usually propped up on my chest licking my tears away. She was there for me when I lost both my Mom and Grandma. And she was there unconditionally through my cancer crapness journey. I always say that her sodium level must be through the roof from all the tears that she has licked away over the years.

There is nothing better than unconditional love from your dog. You can have the crappiest day and when you put that key in the door and open it and all you see is a dog wagging their tail, it’s makes everything OK.

It’s sad to say but Maddy has been my longest relationship. She’s seen all of the guys I’ve dated over the years and yet she’s never judged me. Well she did mention a few that she didn’t like…

As my Baby gets older, I’ve had to make some adjustments myself. Yes, we go for our morning walks at a slower pace. I now have to turn the light on in the hallway on our way to bed because she has night blindness. And I have learned to speak a little louder when calling her.

Don’t worry Maddy, Mommy is going to take care of you unconditionally just like you have for the past 14 years.

Happy 14th Birthday Maddy!

Reflecting on my 6 year Cancerversary

Monday, February 4, 2013

Current mood:  reflective


This Friday, March 8, 2013 will be my 6 year cancerversary.

It feels like just yesterday, I was sitting in Dr. Lee's office going over my plan of attack. Remove the lump and 12 weeks of radiation. I walked out of her office like no big deal.  I can handle this, just a minor speed bump in my life. Then as the weeks went by and more tests happened and with my surgery results everything would change. The cancer had spread and now I needed a mastectomy and 8 rounds of chemo.

I remember her words, they are forever etched in my memory.   She told me there are 3 kinds of people when it comes to fighting cancer. One will walk out of the Dr's office in denial and stay there and do nothing. One will leave the Dr's office have a melt down and then fight as hell to survive. One will leave the Dr's office and fight like hell and then have their melt down. Which was I? I was the third. I left Dr. Lee's office that Saturday morning full of fight. I was going to attack this cancer and show it who was boss.

I did so much research on Breast Cancer, you could say I'm an expert. To this day I can recite my pathology report, the size of my tumor, the grade of my cancer and all the drugs that were pumped through my body. The sad thing is I'm not really sure I ever did have that melt down. Don't get me wrong I had minor melt downs along the way. I did my fair share of crying!

One thing I did do for sure was reflect on my 35 years and decided that it was time for a change. Cancer did teach me to chase my dreams, which led me to moving to NYC. I love NYC and had always wanted to work and live there. I thrive on the hustle and bustle! I loved the 3 years I lived there.

As my 6 year approaches, I'm starting to reflect again on my life and the things that make me happy and the unfortunate things that do not. Maybe it's time for a change again...

The thing in my life that makes me the happiest is being an Auntie to my amazing 2 year old Niece Kiersten. I am beyond thankful that I kicked cancer's ass and I'm able to watch this little girl grow up. We just recently had our first sleepover at my apartment. We had so much fun! There is nothing better than the sound of Auntie Jill coming from her mouth as she screeches to greet me with a hug when I go over for a visit. As I always tell her, she is Auntie's Favorite!

Also as my 6 year approaches, it's time to reflect on the negative in my life and how I'm going to change it. What frustrates me and what exactly can I do to change that...

It's sad to say but sometimes we have negative people in our lives and I know for me it may be time to close a few chapters or doors and leave room for some new and hopefully exciting doors to open.

Life is way too short to live with people that frustrate you or simply don't bring out the best in you. It's difficult but sometimes necessary to say good bye. I do believe that people come and go in our lives and everyone that we meet has a purpose in our lives. Some stay for a short period and other stay for years.

Continuing to live my life with NO REGRETS!....

Tamoxifen has my head spinning

Wednesday, February 20, 2013

Current mood:  Scared


So yesterday was my 6 month Oncology Checkup.  I loathe my 6 month checkups.  Not at that fact that I have to see the Dr. but at the fact that I have to step back in time and relive my cancer all over again. 

Yesterday was particularly fun in the fact that I had to once again have a conversation about taking Tamoxifen....

My cancer was ER/PR+ and Her2+.  I took precautions against the Her2+ part of my cancer and took a drug called Herceptin every 3 weeks for a year via an IV.  I did not experience any side affects with this drug.   As for the ER/PR+ part of my cancer, I was told I should take a drug called Tamoxifen for 5 years.  It would help to prevent my breast cancer from coming back.

Now keep in mind, I had a bi-lateral mastectomy so I felt like I was pretty safe in the fact that my breast cancer wouldn't return considering I didn't have breast tissue anymore.  Of course the Dr is going to say....we can't guarantee that we got ALL the cancer cells, there maybe one or two left behind.  Nothing in life is a guarantee, right?  That's what I was thinking....

After many heated discussions with my Oncologist back home in CT, she eventually wore me down and I started taking the tamoxifen.  The hot flashes were unbearable.  I took it for almost 2 years and then said....NO MORE! 

Well, here I am in Florida 5+ years later having that same heated discussion with my new Oncologist.  She's so concerned about how aggressive my cancer was she asked me if I was willing to have my ovaries removed.  Apparently the Estrogen that my body is still producing is like a ticking time bomb for me.  I have to admit, I was completely caught off guard by the question.  I once again brought up the fact that I had a bi-lateral mastectomy and didn't understand why I needed to take a drug to help prevent the breast cancer from returning since I had no breasts.  My Oncologists response was that she was concerned that we really don't know if the cancer spread past my lymph nodes and that tamoxifen also prevents metastatic breast cancer. 

Now she had my attention! 

Metastatic Breast Cancer is every Breast Cancer Survivor's worst nightmare and words you never want to hear.

We also discussed how tamoxifen is now showing better results in women that take it for 10 years instead of the initial 5 year recommendation.  I remember hearing about that on the news a while back.  I quickly said to her, you want me to take it for 10 years and her response to me was....I just want you to start taking it and we will determine for how long later. 

So I left the the Cancer Center with tears in my eyes and 2 prescriptions in my hand.  One for tamoxifen and one to prevent hot flashes.  The question was...was I going to get them filled and if I did, was I going to start taking them.

I did get them filled and...

After doing research on the "hot flash" med, which is also a drug used for depression and anxiety.  I decided to wait and see if I would have the same reaction to the tamoxifen as I did 5+ years ago.  I hate taking drugs, if I really don't need them and the warning on the label was pretty scary....call Dr if you experience depression, sadness or fear.  Really?  I think I'll wait and see if the hot flashes come first.

And after staring at the little white pill called tamoxifen this morning for what seemed to be forever (5 minutes) I picked it up and put in my mouth and swallowed some orange juice.

Day 1 is over!

Respect ?

 

 

Wednesday, January 30, 2013

 

Current mood: Still inspired

 

 

By this point, I think everyone has watched the Oprah Interview and has their opinion on Lance Armstrong.   I as many others also watched it.  It may surprise many but I do still respect him.  But let me clarify myself.  I do not respect him as an athlete however I am a young adult cancer survivor and I do still respect him for all that he has done for the young adult cancer community.  His Livestrong Foundation helped me get through some of my darkest days in my cancercrapness journey.

 

When I first read the Livestrong Manifesto, there was one line that especially stuck out to me.  And I still believe it's true today.....Cancer may leave your body, but it never leaves your life.

 

LIVESTRONG MANIFESTO...

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is LIVESTRONG.
We kick in the moment you're diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. Your healthcare team. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You're in the fight of your life.
We're about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that's what it takes.
We're about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It's your life. You will have it your way.
We're about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It's knowing your rights.
It's your life.
Take no prisoners.
We're about the fight.
We're your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is LIVESTRONG.
Founded and inspired by Lance Armstrong, one of the toughest cancer survivors on the planet.

Lance says his most humbling moment was when he had to step down from his Livestrong Foundation. 

For me the most important question Oprah asked him was....What do you say to the millions of people who are wearing your yellow bracelets?  To the millions, who believed?....

80 Million Livestrong Bracelets were sold...$500 Million Dollars raised for Cancer Awareness.

I was one of those 80 Million who bought and wore a Livestrong Bracelet.

I wore my Livestrong Bracelet through 15 hours of cancer surgery and reconstruction.  I still have that bracelet today! 

Lance's response was...he was sorry.

I do believe that Lance is sorry for hurting the people who supported him through the Livestrong Foundation, however I don't buy the fact that he is sorry for doping.  I think he is sorry he got caught.

Thank you Lance for helping me through some of my darkest days, I wish you all the best in your darkest days...

LIVESTRONG!