The Best Surprise

It’s not often I log onto Facebook and get a wonderful surprise. Many times its filled with not so good news about friends reporting on test results or finding out another has died too soon. But today isn’t one of those days.

Today I found out I was put into the company of some pretty amazing bloggers and named along with them one of the Best Metastatic Breast Cancer Bloggers of 2015 by Healthline. EEEK!!  I’ll be honest, I’m freaking out a little bit.

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http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs#9

When I started my blog after my diagnosis, my purpose was to document my illness – good, bad and ugly and to have something my son could go back and read for when he was ready. I also hoped that if someone learned something from my experiences or was able to feel like they had someone in their corner it would be worth it. I also believe in being as transparent as I can be so, when I can, it all gets put out there.

I want to thank whoever is responsible for adding me to this list. I’m absolutely and truly honored. I’m thankful for those that read my blog and those that comment. This honor makes every last word I’ve ever written worth it and I’ll continue to keep writing for as long as I can.

Xoxoxo ~ Susan

Something To Look Forward To

In April, at The Lowes Philadelphia Hotel in Philadelphia, PA, an organization called Living Beyond Breast Cancer will be holding their 9th annual convention for those living with Metastatic disease.

I have decided to go and with the help of a travel/lodging grant I can.

Much to my surprise the grants are funded by none other than Susan G Komen.

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I’ll admit, I did have some reservations about requesting a grant from an organization I have huge problems with but then again by accepting it, learning as much as I can and sharing that information with my readers and social media followers, well, that is more important to me. I still feel Komen could and should do more for metastatic women and men and I still feel they view us as pretty pink Breast Cancer’s dirty little secret. But that’s an issue for another day.

I’m as excited as I am apprehensive. This will be the first time I will be in the company of women facing what I have for the last 18 months. I’ve been talking to many via Facebook and/or Twitter and with some, formed a bond. We have talked about how nice it would be to all be in one spot and talk face to face. In April, we will get this chance. While I am over the moon about this, the reality is that our bonds of friendship will grow stronger and while we have no cure for our illness this may be the last time some of us see each other. As much as that scares me, I’d rather have this chance than none at all. All of these women want to be part of bringing metastatic breast cancer to the forefront and help further research efforts. An amazing group.

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I am hoping to get a lot of good information from the seminars I’ve signed up for. There are 2 Saturday and 1 Sunday. I plan on sharing what I learn in future blog posts. So, be sure to look for them at the end of April.

Many of us, including my roommate, are arriving on Friday night. We have casually talked about meeting up possibly for dinner. That should be a lot of fun.

I’ve already started mentally preparing what I’m going to pack. As usual, I will over pack because that’s just what I do. This is only the second time I will be traveling without my husband. This also makes me a bit unsteady but I’m sure once I get there I’ll be OK. I’m most concerned about my connection – and missing it. I can’t walk very fast and I’m terrified I’ll have to navigate an airport I’m unfamiliar with in little time.

I’m currently trying to fight off some kind of bug. Fever today was 100° and the fluid in my lungs continues to rattle around. Hopefully I can keep it at bay but the fluid can’t be a good thing. Tuesday will be 3 weeks I’ve had this lung issue. Time will tell……..

Just Don’t Think About It

I haven’t written in a while. I’ve been dealing with pain issues and getting thru the holiday season without needing bail money.

First, my pain has been off the charts. I’ve been having horrible pain in my hips/pelvis and back. The morphine I’ve been on isn’t helping and that’s not good. After emailing my Oncologist back and forth she increased my 12 hr pill to 2 pills every 8 hours with a separate 10 mg morphine every 2 hours as needed. It helps, but unfortunately, I’m also sleeping. I can’t stay awake with this increase. So, I only take the higher dose after Adam is home from school.

Now, on to tonight’s rant. Everyone deals with having a terminal or chronic illness differently. I happen to have a large network of friends on Social Media that I talk to daily. Whether I’m venting and getting support or I’m helping someone else with an issue. Sometimes we don’t even talk about cancer at all. When I bring up my Social media friends some of my family members think I’m doing myself a disservice and actually forcing myself to think about my situation and bring myself down. “Just don’t think about it.” Its what I hear often and it drives me bat shit crazy. I can’t do that. I mean its completely impossible to get thru a day without thinking about cancer in some way, shape or form. Its my life. Its what I know. Its not going away. Its the equivalent to telling a parent to not think about their child. Not thinking about my illness isn’t going to change anything. Its not going to ‘cure’ me. Its not going to extend my life. Its not going to stop the cancer from growing inside me. So, let me be. Let me surround myself with people that understand, that know what its like. Let me talk to people that can make me laugh thru the tears, that understand my morbid sense of humor and don’t judge me.

The only good thing about my cancer is finding these folks, bonding and forming the friendships I have with them. I’ll be honest, cancer isn’t making me a better person, its not making me look at life thru rose colored glasses like you hear from some people. Cancer wasn’t the ‘gift’ some people want you to think it is. Except, for friends like Mia, Lulu, Melissa, Nancy, Annmarie, Andi, Judy, Sandy and many, many more there is nothing good about cancer. Nothing.

So, stop telling me to ‘just stop thinking about it’ because I’d have to stop talking to my friends and I need them like they sometimes need me. Respect that I know what’s good for me. Respect my feelings like I respect yours.

Friday, January 9th is scan day. By the end of the day I’ll know if the pain is the cancer spreading. I’ll know if the treatment I’m on has to change. I’ll know if its just my hips or other bones or organs. I will go thru this week with a smile on my face and I will act like everything is OK. I will also be thinking about it. I will talk to my network of friends like I always do. I will also be thinking about it. I will have their support and they will make me feel better in a way only they can do.

And I will also be thinking about it.

‘Real Friends’ VS. ‘Hollywood Friends’

Now that I had my diagnosis there were two tasks at hand: Telling family and friends and finding an Oncologist I trusted. Believe it or not the first seemed the most daunting.

It’s times like this that I realized just how much I hated social media. It’s so easy to get caught up in positing every little detail of your life on Facebook but the problem with that is your friends ACTUALLY READ what you post and want updates on things like Dr. appointments and such. I had made that mistake in posting about some of my tests and now people were asking if there were any updates. Uh yeah, there is an update alright. Exactly how does one post that they just received a terminal diagnosis?? “Hey Friends, thanks for all those prayers and good wishes turns out I have Stage 4 breast cancer! Woop!” To me it was like posting about a death and it turned my stomach. Yet it had to be done. The alternative was to call or reach out to everyone individually and that seemed even more horrific to me. I did not want to relive it all over and over.

After discussing with my husband we decided that one big post would suffice and in that post I asked for everyone’s understanding while we digest everything. What happened after was something I did not expect.

All of a sudden everyone was my BFF – even acquaintances. I was getting gifts sent to me, flowers, cards and most irritating of all was the requests of people who wanted to visit me. I had more Pink things than I ever had in my life. In an instant I felt like a science project on display. Everyone wanted to hang with the girl that was going to die. It was overwhelming. Most everyone had good intentions but as most things are it was all short lived. I found out quickly who were my real friends and who were my ‘Hollywood’ friends.

Real friends are those that still reach out to you after radiation and after surgery to just check in and see how you are or just to say ‘Hi’. THOSE are the friends you can count on. “Hollywood” friends are those that want to be able to say they know you and say, “I gave her a pink breast cancer bracelet” and “I gave her those pink earrings” all of which supposedly have some proceeds that go to Breast Cancer. The Hollywood friends end up forgetting about you after the ‘novelty’ wears off. They don’t call to check on you and most often you never hear from them again.

I have a small circle of REAL friends that I can count on one hand and that’s fine by me.

 

Meta-WHAT??

I have Breast Cancer. These 4 words become my mantra. I say them all the time. I try them on like they are a new coat I must now wear. I have Breast Cancer and its in my bones. Well, they THINK it’s the same cancer but they won’t be sure until I have biopsies to confirm it all. There is a small chance that I have two different cancers but I know in my gut it’s all the same beast.

September 4th 2013 is my son’s first day of High School – his Freshman year. It’s also the same day I must have my breast biopsy. Little did I know this would be a 5 hour grueling process.

First, I would need a new mammogram and not just a regular painful one. THIS one requires what seems like too many images but I keep my mouth shut and go with it. Then I’m moved to the ultrasound room. This tech is very meticulous. It’s like she’s hunting for gold or something. She snaps a lot of images. Just when I think she’s run out of jelly to use on me she tells me she’s done and I head to an exam room. And I wait…….and wait……and wait.

After 2 hrs a nurse comes in and has me sign the consent paperwork. She tells me that not only will they biopsy the right breast where the PET scan showed the cancer but they want to biopsy the left too. There is tissue that they cannot properly identify and want to know for sure it’s not cancer. Fan-freakin-tastic.  This day just keeps getting better.

After another hour, needles and what sounds like a staple gun and a lot of tears (mine), I’m told to stay still until the bleeding slows. You see, I’m on blood thinners because before my PET scan I had knee surgery that resulted in a blood clot in my calf. (Another great side effect of cancer). I’m given ice packs and wrapped up with an ace bandage and off I go to pick up my son.

The next afternoon I get a call from the radiologist. She confirms that I have Invasive Ductal Carcinoma. I start writing everything she says furiously. I need to be tuned in now. She says I’m Estrogen and Progesterone positive and HER2 negative. She tells me that based on my other tests that she is confident that the cancer in my spine and rib is metastasized breast cancer but that my Oncologist may want me to have the rib biopsied just to be sure.  Meta-WHAT?  I’m not a stupid person, I know I’ve heard that word before and I knew it was bad but I didn’t understand the magnitude.

That night I did something I shouldn’t have done and would continue to do.  I Googled.  I was told not to but as one does when one needs to get more information we Google.  Bad, bad idea.  I had a very bad evening and the next few days after were just as bad.  There is a lot of old information out there and also not enough information out there.  The first search I did was “Breast Cancer metastasized to bone”.  Do you know what Google pops up as an option??  PROGNOSIS.  (I will not click it, I will NOT click it….DAMN IT!)  The first two options to click are from the Komen website. One would think that with a reputation that Susan G. Koman has that the information would be up to date and informative.  Think again.  Komen told me that the average  length of survival for women with metastatic breast cancer is in the range of 2-3 years.  TWO – THREE YEARS????  DAFAQU???  I did not accept that then and I don’t accept it now.

I would show that Komen bitch a thing or two. She would not dictate to me how long I would live. I have things to do. I have a son to finish raising.  I have a husband I just married.  I have stepson’s I was getting to know.  No how, no way.  I had to find a doctor that would treat me for the long-term and keep me alive.  I could not have a doctor that had this same thought process.

The hunt began the next day.