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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Happy Anniversary 2015

Jess and I just wanted to post a quick message for everyone. One year we’ve been Mr. and Mrs. Leip! 

So many things I could say on a day like today. How lucky we are to have found each other. Some things I question. Some things I don’t. Many times I’ve said how lucky I am to have found Jess. While I wouldn’t call her perfect (way too much yelling), she is absolutely the most wonderful person, mother and wife I’ve ever known. Very rare combo to be sweet yet tough. Very rare.  She is my gift. 

We have taken two crazy lives and made it one family. Four kids, a dog, Cancer, work, we really have it all. I always get so excited talking about our next phase.

Life is good..feeling blessed!

vent + rant = vant

As I sit here drinking my Kombucha, which I drink daily but it has to be away from my husband because it literally makes him gag and throw up in his mouth, I am reflecting on the past year. Truth is, I live in two different worlds.  Cancer world and non-cancer world.  I get frustrated with both because the two worlds don’t really “mesh”.  For me, having terminal cancer is a full time job.  I used to have a “real” full time job (and part-time) and had no trouble combining everything and making it work, as it should be.  Cancer doesn’t really combine with anything.  As I have moved onto the maintenance part of my treatment and therapy, my hair is growing back, I can use my hands again and tie a shoe or button something, my skin has its color back, I don’t LOOK like a person that has Stage 4 terminal cancer.  I can walk up a set of stairs and not have to sit down half way because I am all winded, short of breath and have chest pain.  I am not taking my temperature every 20 minutes, every single day.  I am not fixated on my blood counts.  I weigh over 100 lbs.  I sleep at night.  I have all of my finger nails and toe nails ( I know, gross, that was worse than losing my hair).  I don’t feel like the walking dead anymore.  To be honest, I don’t feel like I have cancer every second of every day anymore.  This is where my two “worlds” don’t mesh.  Almost on a daily basis, I hear “I can’t believe how good you look” or “you don’t look like you have breast cancer” or “you don’t look like you are on chemo” or “you don’t look sick” the list goes on and on.  I also hear “judging by how you look, you must be done with treatment” or ” did you beat it yet?”

Breast Cancer is not one size fits all.  I have been fortunate enough to meet some extraordinary women (and a couple men) who have been diagnosed with breast cancer at all stages from 0-4.  Triple positive to triple negative and everything in between.  I belong to some wonderful support groups and advocacy groups for both breast cancer and metastatic breast cancer.  I have to be honest and say that before I was diagnosed with metastatic breast cancer, I didn’t really know what it was.  Breast cancer was breast cancer.  Pink ribbons were pink ribbons and we all knew what they meant.  This goes back to the old saying “you can’t judge a book by its cover”, you just can’t.  I may look one way but I have these effing cancer cells that have set up shop in my body and are looking to take it over.  EVERY.SINGLE.DAY  I hit a reset button on my strength-o-meter and live my life.

As much as it pains me to say this, I believe that being diagnosed with Stage 4 breast cancer has made me a better person.  There is no longer a selfish or judgmental bone in my body. There are no more excuses. I love my life and I love the role model I have become and will continue to be for my children.  They are proud of me and I am so proud of them.

Early detection wasn’t going to save me.  I painfully know that now and I am perfectly okay with it now.

If I am struggling, I still go back to”The 5 Stages of Loss and Grief”.  These stages do not happen in any specific order, nor do they last as long as each other.  My definition of them is different than the next person, but they were/are absolutely necessary for me.

  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Now, while I don’t have an expiration date yet, I do have a shorter lease on life than most.  I can no longer hear someone say “I might get hit by a bus, you never know” but I love hearing that I don’t look sick anymore (I’m sure my kids do too) so thank you for all the love and support and helping me get the strength every day to hit that reset button.

My step-daughter gave this to me.  Couldn't be more true.
My step-daughter gave this to me. Couldn’t be more true.

Scott’s Entry / March 2, 2015

Well folks, it’s been quite a while since I have posted. Life for everyone gets crazy and I feel pretty confident the world Jess and I live is even more so. 

I’m not so sure where to start. The kids I guess. Four of them. Hour doesn’t go by where I’m not thinking about what they are doing, what they need and what’s next for them. 

Izzy has been doing awesome in school. She is the beast. Youngest but so strong. So smart. She reminds me so much of her Mother. Looks like her Dad, but is absolutely Jess. Funny to watch them battle. Neither has ever lost a fight (or a starring contest). She loves her school, dance and loves when she gets to see Courtney and Justin. Got her ears pierced and didn’t bat an eye. Yup – that kid. 

Hannah is the family artist. Unbelievably talented. Definitely gets that from her Dad. She is so sweet and precious. Just like Jess. Absolutely beautiful and going to be a real problem for me when she gets older. No doubt about that. She led her Girl Scout troop in cookie sales. Kid is just the best. 

Courtney is almost 13. My little baby girl. A teenager. Jesus Christ. Where did the time go? She is so smart and absolutely Daddy’s little girl. I can’t wait to ruin some punks world in the next couple years. That should be fun. She is doing so well in school. Works so hard. Also becoming quite the hoop player. Playoffs start this weekend. Let’s go!!

Justin is off and running at Catholic Memorial. Been a crazy year for my man, but he is doing great and working hard. AAU hoops should be starting soon so it’s back to the lab and working on his spring season.  School is going well for him, SAT prep and all that fun stuff. Before we know it, he will be in college. Unreal how time flies. 

My Jess is well…she is my Jess. Pain and pain and yet finds a way to be living what appears to be a normal life. Church with the kids, meals made, house clean, keeping the husband in check. Quite a load she carries. 

I’m in awe of her. Always have been. She still remains a sweet, wonderful woman who I thank God every day for coming into my life.

I am feeling nostalgic tonight.  In 3 days, Jess and I celebrate one year as husband and wife. One year. Twelve months. So many ups and downs. Cancer scans. Huge. Smiles. Fights. Kids. Drama. Work. Life. It’s just an amazing time. Friggen tornado we are inside, no doubt about that. But so much to be thankful for. A future we are staring together. A house. That’s next. A mortgage. More debt. A place to call our own. I can’t wait. 

Oh and by the since my last post, Jess had two surgeries and another set of scans. All went so well. I hated the surgery. Sitting, waiting and praying all would go well. Same with her scans. All looks good. A daily battle for sure but so far so good. Stress baby. Another day in the Leip house. 

It would not be a proper blog update without mentioning the event that Jess and I attended. Black tie affair. Ellie Fund. Their annual Red Carpet Gala. And guess who was their guest of honor? Ya. Jessica Lee Leip. They came to our house and videotaped an interview. It was so well done. So tasteful, yet so emotional. So real. Being in front of tons of people or a camera isn’t my Jess’ cup of tea. And she just nailed it. Per usual with this chick. Her friends, nurses and even one of her oncologists got to attend. It was truly an amazing event. If you don’t know the Elie Fund, google it. Donate to it and if you know folks who can use some emotional and financial help when dealing with this monster, let them know!

I think that’s the uodate for now. Feeling more blessed than ever. Wife, kids, my life. I know I don’t deserve it. I know they are the gift I’ve been given and thank God for every day. Looking forward to the warm weather. Trips to Florida and Tahiti planned. 2015 is our year. 

Loves to everyone. 

Scott!!

Scott and I had the honor of attending and being honored and The Ellie Funds Red Carpet Gala. What an amazing organization and group of people. Words just don’t do it justice. What The Ellie Fund does for women who are newly diagnosed with breast cancer is nothing short of amazing. Just amazing. I was so honored to be in a position (physically and emotionally) to represent what amazing work the organization does.  BIDMC is also raising money in my honor for The Ellie Fund by matching donations in my honor to provide critical care needs to patients and families that are newly diagnosed. I will give back to the Breast Cancer circuit and community for as long as I live. For as long as I live. I will never be able to give back everything (physically and emotionally) that was given to me when I was newly diagnosed with Breast Cancer but I will use whatever super powers I have inside of me to give what I can. Breast Cancer sucks but the right support can make a world a difference is someone’s life who is faced with a Cancer diagnosis.

Please click on this link. It’s as real as it gets. 

 

http://vimeo.com/120181535

This is a very real video interview that Scott and I had the pleasure of being a part of to show our love and support for The Ellie Fund. If you’ve never heard of them, now you have.

Some of my friends got the opportunity to attend the event and BIDMC also surprised me by inviting my treating oncologists, chemo nurses, surgeons and social worker! Very cool. Here are a few snapshots from the night!