April 28, 2015

I’ve been having so pretty nasty pains where my port is inserted in my chest for the past month or so but I have just been toughing it out.¬† Although the pain stops me in my tracks and has been pretty intense from onset, it has been progressively getting worse.¬† Yesterday when my port was accessed (this is when a needle is inserted into the reservoir of the port) to get ready for my treatment, it killed! When my nurse flushed it with saline it felt like it was burning my veins.¬† She immediately said she was not going to treat me with my port and that I would need to have my chemo peripheral (in my arm). Gross.¬† I have had my port for well over a year so I was not happy to have a needle being dug down deep into my forearm to try and find a vein that will cooperate.¬† I wanted to just suck it up and have the port used but I was being told that it wasn’t safe and it would put my health at risk if there was a crack or something in the structure of the port.¬† So I got sent for a plain x-ray to make sure there were no blood clots and the placement of the port was okay.¬† No bloodclots and placement seemed fine.¬† Still, they refused to use my port so the needle went in my arm and I had my chemo.¬† I was happy to have a chest x-ray because I know how quickly this asshole cancer can spread to my lungs so its nice to have some reassurance that my lungs are clear for now.¬† While I sat there by myself, this man who was sitting next to me got up and stood over me with his chemo pole in tow and started asking me the typical questions you hear on the infusion floor.

“What kind of cancer do you have?”

“How long have you been having chemo?”

“How many treatments do you have left?”

“Why do you have hair?”

you get the picture…

After I answered his questions, he looked at me and said “This is only my second chemo treatment, they told me I have terminal cancer and I’m dying but I have too much living to do, to be dying.¬† We all have an expiration date, the only difference between us and them is that we most likely know how we will die but none of us know when we will die.” We shared a¬†wonderful 15 minute conversation, he then said “I just can’t believe you have cancer, you don’t belong here” and then he went back and sat down in his chair.¬† I hope I get to see him again, he was the most positive person I have ever met in my entire life.¬† I pray some of his positive energy passed on to me while I sat next to him.

His name is Mike and this reminds me of him.
His name is Mike and this reminds me of him.

The conclusion of yesterday was that I have to go in on Thursday morning, prepared to have my port surgically removed. There is suspicion for a tiny crack somewhere in the structure.¬† Nothing to eat or drink after midnight tomorrow, blah, blah.¬† I don’t want my port removed because I need it which means I need to have another one put¬†in somewhere, probably on the other side of my chest.¬† I hate cancer right now.

port accessed and chemo in my arm yesterday = not fun!
port accessed and chemo in my arm yesterday = not fun!

I am going to rewind a little bit.¬† A few weeks ago, I took a trip to Philly to attend a conference for women living with metastatic breast cancer.¬† It was AMAZING, to say the least, to finally meet some of the women that I have formed a relationship with online in our support groups.¬† I got to meet and hug some of the women who have mentored me and pulled me out of the dark when I have been stuck.¬† I also got me meet some young women just like me.¬† Most of us don’t look sick, but we have a terminal disease.¬† We¬†all share the same life with metastatic breast cancer. The breast cancer that kills.¬† We are the small percentage of patients that research money doesn’t reach. We are all aware.¬† We need more than “awareness” because early detection¬†didn’t save us.¬† I met girls as young as 24 and as old as 74, all living with this and most were diagnosed with Stage 4 right from the gate.¬†I took so much strength and wisdom from these women and I am so grateful for them.

I also have to add, in that week, 3 young women in my under 40 support group died.  Just like that.  Their babies lost their mamas, their husbands lost their wives, their families lost a piece of them and their friends lost a piece of their hearts.  Just like that.  So quick.  Like freaking wild fire.

“I can be changed by what happens to me.¬† But I refuse to be reduced by it.” – Maya Angelou

I hate cancer so much right now.  This past week, Cancer also took my uncle.  He was an amazing father and grandfather and always had a smile on his face.

My biggest fear has always and will always be leaving my kids without their mother.¬† I am not afraid of dying.¬† I don’t want my kids to lose their mother.¬† What keeps me sane is that I know, no matter what, my kids will not regret one moment they shared with me.¬† They will carry me with them forever and I am making damn sure that I leave a legacy for them.

“But you don’t look sick!”

MUCH LOVE, J

P.S. Fingers crossed for a smooth port study Thursday morning and no complications with my port!

NYC trip

As Scott travels to NYC every week with work, I pulled the girls out of school for a few days and we tagged along to go walk around my old stomping grounds, visit some awesome friends and take them to their first broadway and off-broadway shows.

rainy Times Square!
rainy Times Square!
First Broadway show!
First Broadway show!
FAO and the big piano, of course!
FAO and the big piano, of course!

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Hope and Love.
Hope and Love.

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Marielle and Izzy
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Marielle with the girls, Empire State in background.
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St. Patricks Cathedral.
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Scott, Hannah, Izzy and I at Madame Tussauds, so fun!
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attempt at getting Scott to take a picture of the 3 of us.
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dinner with Melissa!

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