Wednesday, April 2, 2014

A quick note from me since my husband does such a great job updating on our lives.  The last visit with my oncologist was interesting.  I am going to continue my “maintenance” drugs, every 3 weeks, Herceptin and Perjeta.  These get infused through my port.  I still hate my port, I have lost so much weight and my upper body frame is so skinny that I’m all bones and it just sticks out so far and it’s uncomfortable.  I keep bumping it or rolling on it when I sleep.  My kids can’t rest their heads on me because of it.  I want it out but I know it is better for me in the long run.  When they tried to get my blood from my arm last week, she couldn’t even find a good vein in my arm and it was all scar tissue.  I have been placed on an Aromatase Inhibitor that I take daily and also Lupron shots that I get every 4 weeks.  These are going to rapidly push me through menopause because I have hormone positive breast cancer and it feeds off of estrogen so we need to stop giving the cancer cells their food.  These new additional drugs have so many (more) side effects but I still have the chemo side effects so what’s a few more!  So, I will get scanned every 2 months (abdomen, pelvis) every 3 months (bones, brain) and then adjust my treatment as needed based on scans and blood work.  Unfortunately, my liver functions and tumor markers are rising.  They are presently at the same place they were back when I got diagnosed after dropping significantly while on the heavy chemotherapies.  My oncologists want to try and keep me off of the heavy chemos for as long as they can because I got pounded for the past 6 months and they want me to try and have a better quality of life right now. My neuropathies are still pretty significant as well.  And, yes, I’ve got a lot of pain.  I don’t have to wear those awful compression stockings non-stop like I was because I’m not retaining fluid anymore.  I dropped almost 8 pounds in a week that was mostly related to the fluid retention.  The best part is my hair is growing back! Although, my eye lashes just fell out, which is strange.

Living with metastatic breast cancer is tough.  I have good days and bad days.  On a bad day, I’m lying down watching my kids play.  On a good day, I forget that I have terminal cancer.  I fight through the pain and disabilities every single day, I never get a break.  I could easily give in, but as far as I am concerned that is not an option for me.  My kids deserve a mother who can care for them and give them everything they need.  My husband deserves a wife who can harass him for loading the dishwasher the wrong way.  People need me around and I intend to fight until I cannot fight any longer.  Things change when you get a diagnosis of metastatic breast cancer.  I used to have dreams that I know I can no longer achieve but I have made new ones.  I know that I can no longer be the person that I was but I am not unhappy by any means.  If I can help another person by giving them hope then that gives me part of the fuel that I need to continue this fight.  My family is obviously the engine behind me.  I truly believe that my positive outlook and lifestyle have a significant impact on how I cope with living with this disease.  I know there is no cure.  Imagine living with something that is staring you in the face every single day and trying to prevent you from living your life with any kind of normalcy and you knowing that there is NO cure.  It is going to take your life eventually.  Try to imagine that.  If I wasn’t living it, I don’t think I could imagine it.  Especially being a mother of young children, I wouldn’t want to imagine it.

I will never know why I have metastatic breast cancer and I wish there was more awareness out there for this disease.  I had genetic testing for 29 cancer genes and all were negative.  I have no significant family history.  I had no risk factors.  I will never know.  I have to live every day like its a new day with new things to come.  I know that sounds “obvious” but I spend a lot of time with sick people and I see how negativity breaks them.  It is also really amazing how far a smile and some kind words can go, you never know what someone is battling.  Life is way too short, I have now learned this first hand.  

I am eternally grateful for the wonderful people in my life.  My long time friend, Mr. Kevin Smith and his band Marie’s Children for hosting a benefit night in memory of his mother, who lost her battle with Cancer, and in honor of me and my battle with cancer.  I was unable to attend because of my health.  The world is full of good and giving and love.  I can never thank all of you enough, from the bottom of my heart and on behalf of my family, THANK YOU.

Happy Spring! Love, Jessica

Tuesday, April 1, 2014

Well hello there! It seems like it’s been forever since we have posted. Sorry everyone. Well, I’m not really sorry but I know Jess would want me to say that, so there ya go!

I can personally say it’s been a complete shit show at the Leip house. I will try and update you on our world.

Let’s start with Jess. She is the same, I guess. It’s so hard some days to remember she has terminal cancer. She is just so amazing. With her kids, mine, me, everything. I say it a ton, but I’m just reminded daily of how incredible she is and how strong her will is. Just really the best woman I’ve ever met. Nothing stands in her way of getting stuff done and getting people what they need. Oh and none of it is ever for herself.

On the medical side, she is ok. I can tell she gets tired and does too much. Still has pain, leg pain, liver pain. Pain. She doesn’t say much about it, which is how I know it hurts.

She has chemo every 3 weeks now. At first I thought it would a good thing but I’m coming to the realization the more chemo, the more crap that’s fighting those cancer cells. As you all know, I don’t get all the medical side. Just know when my wife has pain, and how to try and get her what she needs. We go this Monday, so we just keep pushing forward.

I keep saying it, but she will be the miracle. Something will happen. I don’t know when or how, but I can feel it coming.

Now on to the fun stuff. We moved. Across town. Did you really think I would leave Ashland? Ha. My home. My town. We are in a duplex. So much better space. So much more like a home than the bachelor pad I had. I really wasn’t sad to go. This space is so much better for everyone. The move itself was brutal. I hate moving. My boy Damon, and his boss at Mark’s Moving and Storage donated the move to Jess knowing her story. Amazing how people pay it forward.

So many people offered to help. Bob, Michelle, Debbie, Lisa and Sean all were huge. Couldn’t have done it without them. I was ready to get a dumpster and toss it all.

Anyways, so we have a great new place. Making new memories. Jess is running the ship. Having me move each room 20 times until it’s perfect. I have broken up with her every day cuz I hate moving and lifting anything, let alone the same thing 5 times. She plays her damn cancer card and can’t lift anything. It’s a joke. I didn’t think this through which is typical of me. Oh well, my next marriage I will get it right.

The kids are great. Everybody loves the new place, they love being together. But the space is also great so when they get sick of each other or when Jess and I get sick of them, we can push them to their private space. We are so looking forward to the holidays. Having everyone over. Just a great place to entertain. Oh, and I’m wicked entertaining. Just ask me.

This reminds me that Jess’ friend Kevin Smith held a fundraiser a few weeks back. Again, just someone stepping up for Jess. I don’t know Kevin but I watched how his event came together. Just amazing. Jess’ friend Emily gave us the complete run down. So many people trying to help and most of them didn’t even know Jess.

I can tell you for a while I was a person who said “people suck”. I don’t think that now. I think the world is full of beautiful, caring people. It’s the bad apples, the negative ones who come into our life who try and poison us. Just can’t let it happen. I now weed them out. Simple and easy.

Signing off for now, hope everyone out there in blog world is happy and doing well. If you’re not, call me, come by. 15 minutes with Jess and the kids is enough to take whatever is wrong with your world and make it right. Trust me, I’ve been living it for 18 months and there is nothing better.

Oh and Jess is pregnant. Yes, April fools. Lol. Love it! Did I get anyone?