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

6 thoughts on “Wednesday, April 2, 2014

  1. JESS
    I tried thinking about what you must be thinking and feeling, and as hard as I try I can’t imagine living it. I think your family and friends are very lucky to have such an amazing person in their lives.
    I know you have already taught your kids more about love, strength and dedication during their young lives than most will ever learn.
    I know reading your post has made me a better person and to view things differently.
    I pray you continue to have the strength, will and ability to continue “FU Cancer”.
    Jessica you are amazing!!!! I thank you for sharing your journey.

  2. Ok babe, great info and love your sharing.

    You’re incredible, you will be the miracle. Keep believing. Remember, true faith is when you believe when you have no reason to!

    And yeah, I’m glad you came clean with your harassment of me. I have some other things I don’t like as wel but we will discuss that at our weekly wife review.

    Loves baby…straight loves!

  3. Jess, you are an inspiration to all who have the distinct privilege of knowing you. I know you only through this forum And yetI admire you so much. You are a strong woman and very kind and loving to your family. You have accepted your situation and have chosen to fight for every single second with your beautiful family. I hope your fight lasts a very very very long time. You are teaching everyone in your life valuable lessons that we will all carry with us for the rest of our lives. We are all guilty of taking the gifts in our lives for granted . Your posts written from a perspective of gratitude in the face of pain and terminal illness inspire me to appreciate the gifts in my life and to live my life to its fullest . I will continue to pray for a miracle for you and your family. Keep the faith Jess . You are fighting a great fight !

  4. Jess,
    Your family and you are such an inspiration to so many people. Many may not “really” be able to understand all that you are going through, not unless they or a family member or very close friend has gone through what you are going through. I know and feel the same pride for your fighting spirit as I felt for my sister. Outlook absolutely plays a big part in how you fight the battle. Always believe that you will win. Never lose your positivity. Love to all of you.

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