When you hear hoofbeats....

Today I went in for an MRI. There are people that hate the experience but I think the sounds are actually relaxing, there are hoofbeats, alarms, ones that sound like voices and more...it kind of helps the stress in my head from getting an MRI.

Remind me never, ever, ever to set an MRI appointment (or anything they have to draw blood or run a line) on a Monday. It was a painful disaster because obviously my veins hate Mondays too. I am going to be a bruised mess.

My head is killing me, I am sure it is stress. I hate the waiting game for results. It's probably nothing, isn't it usually nothing but my headaches have been regular and my brain has been 31 flavors of wonky, not being able to pronounce words I can see right in front of me sometimes, not being able to remember simple facts I know I know, stuttering and so forth.  It's funny the fear of early onset Alzheimer's disease scares me more than the fear of cancer. One may mean not being around to watch my kids grow up and the other may mean I am around but don't know who they are and are a burden on them. And then there is the thought, what if they find nothing....am I just going crazy, getting stupider or what? ......Sigh, has it been 48 hours yet? I hate waiting for results.

Update: I have a brain and it is all fine. :)

Where is my story?

Anyone who knows me knows that I have no problem sharing my cancer experience. I am sure most would agree I talk too much sometimes about my experience. But I had only shared my experience on an individual basis....talking to friends, family and sometimes a random stranger in an elevator. And it was just that...sharing my experience, not my story. 

During CancerCon 2015 I attended a breakout session in which Tamika Felder shared some of her story and spoke about how to share our story. I can not even begin to express how inspired this left me feeling. I would say I was almost eager for someone to ask me to share my story. Mind you, I was leaving out some steps Tamika talked about...the steps one needs to make sure their story is focused, we all have stories...we just need to figure out what our story is. 

Recently a good friend of mine asked me to speak at a Pink Shabbat dinner. She wanted me to get up in a crowd and share my story. Still high on the inspiration from Tamika, I immediately said YES!!!! Finally, I get to share my story. But that excitement did not last, I realized I knew what my experience was...but what was my story? What do I talk about to this crowd so that it is inspirational to them? I tried to pick a theme to stick with. What am I passionate about sharing from my experience, were their issues I wanted to address, was there something to focus on in my story? I felt like I was missing the road map I needed to make this experience effective.  

After days of talking to myself in the shower, in bed and on runs about my experience I started to feel better. I would focus on the fact that EVERYONE (doctors, nurses, family, friends and more) all said the same thing "Don't worry you are too young for cancer". I decided this would be my theme and I would build my story around it. I started to feel confident. I started to feel like I was ready to share my story. 

Then the week of the Pink Shabbat came, my family was passing around a stomach virus and planning my story took a back seat. But I wasn't worried because in my head it all sounded good. My plan was friday before the dinner, when I had off of work to sit down and map it all out. Make sure it that my story flowed and didn't get off track, that I had a point and that I would be inspiring. 

Friday I woke up sick and miserable. I called my friend and informed her that I probably couldn't or at least shouldn't come to a dinner in my current condition. I felt beyond awful since I was the only survivor speaking and she had advertised I would be there. But my friend, always kind, said she would call around and find someone else. I told her if she couldn't find anyone that I would drag myself there no matter what. But she said I should probably stay home and I should focus on feeling better. So that is what I did. I went and laid down and forgot all about mapping out my story. That is until she called me back hours later to tell me that she could not find anyone else and could I please come to the dinner just long enough to speak. Of course I would not let her down. 

As I sat waiting to be introduced, I realized I wasn't ready...what was my story again? What could I possibly share that could mean something to these people? What did I have to say that was important? I was unprepared, even though I had been planning it for weeks. I didn't have the road map I needed to make this an effective speech. But I did go up there and give it my best. I focused on the "Don't worry you are too young for cancer" but somehow along the way other themes started working their way in and my talk ended up disjointed, awkward and perhaps a little watered down from what I had wanted it to be. I almost felt embarrassed for my friend for endorsing me. I am sure that I felt it was worse than the people listening, mostly because it was not what I had hoped it would be. It wasn't inspirational or motivating or heartfelt. It wasn't even me. 

I want to share my story. This won't be the last time I try, I am going to do this. I know that somewhere in all my experiences I have an amazing story to tell. I just need to find it. 

It's like forgetting. . . .

Today is world Cancer day. It is a day to recognize all the cancers out there that people struggle through, die from and survive with. If you believe a post I wrote on Facebook it is also the 2 year anniversary of getting my official N.E.D (no evidence of disease). 2 years. Sometimes those days seem so far aways...like didn't I have cancer decades ago. Other times the memories are breathing down the back of my neck and won't go away. Today they won't go away. Today they are haunting me. It is the kind of day where I am listening to my Regina Spektor CDs and trying to hold the tears in my eyes.

One of the songs has the line "It's like forgetting the words to your favorite song". It is like that sometimes. Sometimes I am shocked I can't remember something that should be engraved on my brain. Can't remember the name of a medicine or how long I did chemo, can't remember what my kids faces looked like when we talked to them about cancer, can't remember what my mother said when I called her. But at the same time I can remember her voice, the sound of it, the feeling in it...it's like the song you can remember the melody to but not the words. I remember my children holding me a lot, hugging me as if they thought I might float away. I remember feeling like I was going to float away. I remember how horrid chemo was and I remember the color of the medicine and the look of it in the syringe and the feel of it as it pushed into my IV.

Sometimes you may forget the words but you never forget the melody.

'And there will come a time, you'll see, with no more tears'

A year ago today I found out I had cancer. I can remember so much of that moment (or moments) clearly...standing at the front door while Mark hugged me, kids sitting in the car waiting to head out to a music class party and then fireworks...no idea that life was about to change....the phone call to my mom...the text to my best friends...the message to my sweeties that said " I talked to my doctor 30 min ago...i have breast cancer. I don’t want to talk right now" ...if I close my eyes it feels like that all happened just minutes ago. . . . but it has been a year. It has been quite a year...ups, downs and even sideways of a year. I have lost friends but I have gained new (amazing) ones. I have found out that some of the friends I had are amazing, better than I could ever hope for. I have discovered that not only am I stronger than I knew but so are my husband and kids. 



I tried so hard not to be a mess today but to tell you the truth...I couldn't help it. I found myself giving the kids a talk on the way to the bounce house about how mommy is a little moody today and it is not their fault and it is not fair of me to ask them to work harder at being better because of my lack of patience but I was just having a hard day. I must of stopped myself from full on crying at least a dozen times, tears in my eyes willing them not to fall. I felt like a wimp, here I am a year out from bad news but cancer free and no matter how hard I try to focus on all the amazing things that have happened over the last year...instead it is all the bad, sad and confusing emotions that swirl in my chest. It's silly right? I am cancer free, I beat it ...at least for now...hopefully forever but today no matter how many smiles I plastered on my face I felt like crying. 

Another survivor made me feel less like a wimp by telling me ...it takes time before this is a normal day...but Mark says today is what you make it. They are both right in a way. I focused on making it a good day and in the end it was an amazing day but it was not a normal day...there were too many emotions involved. 

There was a good article I posted today (if you did not see it: http://www.huffingtonpost.com/erika-lade/cancer-friendship_b_3539970.html)...it said something that rang true to me 'When you finish treatment, that is when things get even more difficult, in some ways, because you begin to try to figure out a few things, namely a) what the hell just fucking happened b) how do I continue a normal life now and c) how do I grapple with the notion of recurrence and every ache and pain sending one into an obliteration of anxiety.

And when you are done with treatment, that is when cancer becomes intensely isolating, because a notion of post-treatment care in our current healthcare paradigm is non-existent and everyone in your support circle is just glad you are done and wants to move on from the nightmare that just happened to you. And you want this so badly too, but unfortunately the cancer cloud looms heavy over you and you cannot simply forget and move on. It is part of you.'

That is so true. As much as I want to go back to being just Holly...there is so much more to me now. . .So much swirling inside. Emotions I have dealt with, emotions I have avoided, thoughts, fears...it is all part of me. 

In the end what I can really focus on to relieve this knot in my soul... is much like the end of my day...the happiness that came from it, the friends, the support and the love. Yes, I lost friends during this...sometimes not even their fault, but the way I had to deal with things. But I gained so much more. I gained this feeling of love that came from the people that were exactly where I needed them to be and that supported me in large and small ways. This support that came from people that were beside me every single day and the support that came from people that I didn't even realize were there...thinking about me. . .the support that came after the storm from people who understood and the support that keeps me standing strong every day. 

The end of my day today was exactly what I needed it to be full laughter, love, happiness and support. Thank you to all that were there and to those that were there in spirit. 

F Cancer. 

Tomorrow

Well tomorrow is the big day. . . a bilateral mastectomy, reconstruction, tubes and ovaries removed. Five and a half to six hours of surgery, 3 surgeons and a very long nap for me. Every one keeps asking me how I am feeling, how I am doing...I try not to lie so I crack a joke or shrug or give a non-committal answer. 

Truth...I am scared shitless.

I know I should not be, I know people who have gone through this journey and are fine...better than fine...perfect. However, a lot of people close to me lately have gotten bad news in regard to their cancer or health...maybe it is the superstitious in me but I feel like it is my turn. I feel like what makes me immune to this bad luck, bad news....bad.

Truth...I think about this all the time.

I think about all these bad things that can happen during surgery or results after surgery ALL THE TIME. When I am watching my kids play, when I am doing dishes, when I am laughing with friends, when I am making plans ....these thoughts are always there. Thoughts of finding out the cancer has spread, thoughts of something going wrong in surgery, thoughts of never waking up....yet I put a smile on my face and go on. If any of these things are going to happen...there is nothing I can do about it. So I live my life, I love, I make plans and I try not to let the stress make me a total bitch...just a little bitchy.

Truth....I hate this.

I hate this surgery, I hate the fact that they are changing things I never wanted change. I hate the fact that I am going to be 35 going through menopause. I hate the fact I am going to have fake boobs, scars and that when I wake up I am going to be changed. It doesn't feel like I will be me....at least not the old me...but a new me in a weird way that I will have to adjust to.

Last truth for the night...I hate Cancer more!

I never want to go through any of this again. So I will face my fears...I know I am strong and I know that this is the END of the Cancer chapter in my book of life and now I get to move on.

The best birthday present of all

I was going to write a long blog, since I have not written one in a while. Alas, last night was busy and filled with family time...so it did not get written. This morning we are preparing for school so I don't have much time but wanted to share this with you.

Yesterday I got an early birthday present...a great one.

Wednesdays are Chemo days. It took 3 attempts to run a line but other than that it went smoothly and fast (they were having a slow quiet day). After Chemo Mark and I had a quick lunch before heading over to the Women's Health Center. I was having a breast MRI. A couple of weeks ago my right boob started to hurt where the lump had been, it was tender to the touch and would get random shooting pains. I thought I felt a small lump. Dr. Diab said he didn't think it was anything to worry about but wanted to do a breast MRI just to see what was going on. So there I was getting another breast MRI. It took two tries to run the IV line, not a good day for pokes. I spent the next hour in the MRI machine listening to the funny noises. After I was done they informed me that the doctors were not there right now, but someone would be looking over my film and calling me by tomorrow afternoon at the latest.

Two hours later, that is when they called me. I actually missed the call but the voicemail said she had good news and that she was not going to be in the office much longer. I returned the call expecting to hear...Nothing new, all is the same. Alas.......

DRUMROLL PLEASE...............

My tumor is COMPLETELY gone. There is just a black hole where the cancer once was. My lymph-nodes look good, all is good. So despite having one more chemo session and my surgeries....I am now cancer free. Happy Happy Birthday to me!

I am rich....

No, I am not financially rich....one day but not today. I am rich in support, love, loyalty, love (did I already say that), family, friends and support.

I have given a lot in my life, mostly to people who didn't really deserve it, I have put myself in financial debt for people, risked jobs to be there for people, spent hours on the phone in the middle of the night for a friend in need, dropped everything and given a lot of myself emotionally to people who needed me only to find when I needed them in return, I was alone. I spent years being sure that when things got really bad that I would be alone, because I had bad taste in friends and gave my heart and loyalty to those who did not give back.

But here I am, in one of the hardest fights of my life so far and I am far from alone. Some where along the way I became rich...I found out that I have an amazing family (Fosters, Wallaces and Solomons)...I have more support than anyone can anyone can ever ask for.

Truthfully without this support we could of been really (sorry to be crass) fucked in this situation. With moving to a new home, starting up a new business, two kids and then cancer on top of it all....I was scared we would drown...in debt, in stress, in sickness ...under the weight of it all. But support has come from all over the country....friends close and far away...family we see at every opportunity...and family that I have never met face to face.  Sometimes I feel like my heart is going to explode because I feel so grateful, so loved....sometimes I feel so lucky, so amazed....so loved.

Friends I have known for only a couple of months have been so amazing, somewhere along the way I not only got amazing taste in friends but realized that there were some amazing ones I have had all along that I took for granted. My kids are so lucky to have people who will drop everything to be there for them, to watch them through my treatments, appointments or even just on days when I need to get out and forget it all. They are so loved, they are so lucky to have so many people there for them and they don't even understand it yet.

I have a great group of friends here...they make me laugh on days when I think laughing is impossible...they are amazing and really take a load off my shoulders that sometimes seems unbearable...but they make it feel as light as a feather. How did I get so lucky?

And let's not forget about family....my kids amaze me....they have seen me sick and barely able to talk...they have been there days where I can't get out of bed, days when I have no patience and am a grump...yet despite the mood I start in, they can make me smile. The other day we were walking in the store and Blake was behind me and he randomly announced (really loud) "My mommy pretty" ....little did he know it was a day I was feeling anything but...I was feeling bald and haggard ....and yet his unconditional love just saw me as pretty. Maddie constantly comes home from school with art work that is nothing but hearts and I love yous for me. They both make me stronger...they both make me feel better than they will ever know.

My husband. He is my rock. This can not be easy for him, I know how much he loves me and how hard this is for him to watch some days. He doesn't have friends like I have to take him out and help him laugh, relax and release all this stress. He is there whenever his friends need him but this has made me realize that he has very few of those friends there for him. He has been handling so much of this stress on his own (although his parents are constantly there for him from afar). He has been so strong although I know he won't appreciate me putting this in print but I feel like he is almost drowning in the stress. He has the weight of starting up a new business and the financial stress on his shoulders...learning new laws and a new system...trying to make a name for himself....supporting his family, not being a burden on his parents. .. not letting his family down...watching his wife battle cancer...trying to find time for his family while working his butt off to make something of himself for his family. Trying to be strong for me. He amazes me more than he will ever know. His strength, his love, his determination know no bounds. He is human, he has those days where I want to kick him in the butt, those grumpy days when the stress is on him is like an anvil pulling him down to the bottom of the lake. I wish I could wave a wand and give him the support system that I have ....friends that would take him out and make him laugh and talk with him about what is bothering him....I threaten all the time to send a hate mail to the friends that I feel have let him down...those friends that owe him to be there for him....because he cared and loved them enough to be there for them. He has asked me not to, so I won't but I can't be silent. So hopefully he will understand I am saying this here instead of singling people out...because he deserves better...he deserves support....he deserves friends to lean on when times are tough...because he is that kind of friend. I lean on him so hard sometimes I am afraid he will break, yet he just loves me in return.

I have not really told anyone yet, except my mom, Mark and my Sweeties. But the other day I got my genetic results and I tested positive for the BRAC genes (cancer gene). When I got the phone call in my head I leaned against Mark and cried. But in person I realized it was stupid...I always thought I had the gene...the doctors and counselors have said with me getting cancer so young, my mom getting it young (40's) and my grandmother getting it young that chances were great it was heredity. So why should I be upset and surprised. But the truth is, I wasn't upset by it because I figured I would get a double mastectomy and my ovaries removed and I can watch my grandchildren grow up without looking over my shoulder. But after doing research I have learned that I am at risk for a lot of different cancers....( pancreatic cancer, stomach cancer, gallbladder and bile duct cancer, melanoma, pancreatic cancer and early-onset prostate cancer.....http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA). So I will always be looking over my shoulder...always have to be diligent in my healthcare. I will always worry about my kids having to watch me go through this all over again...always have to worry about not watching them grow up, not getting to see my grandchildren....not getting to see what my children become.  But let's not forget this also means I could of passed this gene on to Blake and Maddie...if they don't come up with a cure they will always have to be looking over their shoulders too....waiting to see if they get cancer too.  This all sits on my chest like a brick...I have random anxiety attacks just worrying about it all. I know I will adjust after it all sinks in, I know there have been people in my life who have been through worse. . . but the brick still sits there randomly getting heavier and making it hard to breath....it is this stress that makes me so grateful to have the support system I have. To have my family, my friends and even random strangers with hugs (and a lady in target kissed me) and words of wisdom.

How can I not beat this with you all by my side? Thank you. Thank you. Thank you.