Stable…

My PET scan came back to show stable disease and decreased activity at the site of my original tumor in my sacrum. This is great news!

Yet, for some reason I’m not bouncing off the wall with relief and excitement. Don’t get me wrong, I’m thrilled and so thankful for a good scan. I am so happy to know my body is responding to my current treatment.

53a49fa9a589b4e5588af907But, I have cancer. I will never again feel the strength and joy of being in remission. Of being “cancer free” of being “done with treatment” of “getting back to life” like so many cancer patients talk. The steps we take now are holding off the cancer. Maybe for 3 months, maybe even a year, maybe more. It’s settling into this reality and the unknown that has me nervous to celebrate. How I yearn for someone to say- we can solve this or this is what we need to do to make you well.

This is the reality many people face who live with chronic disease or an incurable cancer. It’s hard. I never felt these feelings and I can’t quite explain it.

So, today we celebrate. We tell our kids mommy’s cancer is smaller and give them some much needed relief. We say a prayer of gratitude and let the relief roll over us knowing it isn’t worse. Today, we take a deep breath.

And we get busy living!! Headed to Michigan on Friday for a summer of adventure, laughter and fun. I have a doctor lined up there to do my treatments in between sailing, visiting friends and fishing. I will keep nurturing my body,mind and spirit. And in 3 months we will scan again. Hoping for more time and another stable report.

Love and stableness,
Lara

Celebrating life

I just wanted to share that as the day went on today I felt a greater and greater sense of relief and joy in the positive news we received about my PET scan.

I am settling into this new reality and realizing although I would much rather give it all back and be a stage 2 breast cancer survivor or better yet never have experienced cancer at all – this is my life. I have cancer. And, today I have LESS!

Today I looked through a Facebook album of a fellow survivor called angels- made up of beautiful women who have died from cancer. Most of them young, smiling women. These women have traveled this same path and fought to survive, yearned for more time with their children, parents, friends. That is exactly what I have right now. A good scan and time to enjoy my life.

Then, my oncologist from Alabama called me. The same man who held my trembling hand as I started chemo pregnant with Bennett in 2007. And together we celebrated my good news. And he reminded me of how far I’ve come. Our family has been through so much and we will be through so much more. But today, we will celebrate and give thanks.

The best part of today was telling wills and Bennett. They were relieved and happy and our big family bear hug was amazing.

Thank you to everyone who has shared their support and excitement. It is a day to celebrate life, cherish loved ones, hug friends and hope!

always hope
Lara

happy summer…

I am a huge fan of summer.  From the days sailing my little sailboat with friends, lifeguarding and teaching swimming lessons as a kid to the carefree endless days on the shore of Lake Michigan with our boys, adventures and traveling all over the country to visit friends and family.  I have always squeezed every bit of fun out of each summer day.  Wake up early for a run and put the kids to bed dirty and grimy, smelling like bug spray and s’mores… only to wake up and do it all again…   But, this year I am having a hard time getting into summer.   Honestly, I’m having a hard time getting into life in general.

Living with a disease that has no cure is emotionally and physically exhausting.  When I had breast cancer the first time there was a plan and a goal and so much hope.  We were all fighting to get to the finish line and “get back to life.”  I was a girl on a mission.  Life was so amazing and full of joy for all I had conquered.  When you are living with a disease that has no cure there is an overwhelming feeling of being trapped. suffocating. In a way the finish line is death. Or a cure. Unfortunately one seems more realistic than the other.  It’s the continual struggle I have – facing the fear of the unknown and thinking of a day when I won’t be here. When people will sit around the Hope Scarves office with pictures of me hanging on the wall and talk about “what would Lara say about this…” Thinking how Bennett says “Mommmmmm!!!!! I need you!” about 20 times a day and thinking about the day when I won’t be here to help him with whatever it is he “needs.”   It is really hard to live in the present when the fears of the future consume me.  What I wouldn’t give for a plan or some kind of reassurance.

So, what I try to do is live in the present.  To be aware that in the moment, I am here right now to help B with whatever he “needs.”  But, I can’t really explain how frustrating living like this is.  I never knew anything like it until this became my reality.  I find myself surrounded by friends, laughing and joking and yet so alone.  I have been blessed with new friends who “get it” and are living with metastatic disease.  They have become a wonderful support system for me as I navigate this new reality.  It’s just that I DON’T want to navigate this new reality. I just want my old, happy life back. And sometimes the anger and the jealousy of everyone else moving on with life is more than I can bare.  I sink into the drivers seat of my car after day camp drop off with tears in my eyes and slam my hands on the steering wheel as I think- “How can this be happening?”  Acceptance is on-going.   Also is letting myself believe in possibility.  We don’t know what will happen and I’m trying to allow myself to be hopeful that what will happen is going to be beautiful and full of life.  That I might have a lot of time to live and love and raise our boys with Jay.  That my body will fight this cancer and hold it off… Then, there is the right now… which is reality.  This is all exhausting.

But, when I look at my current reality in this moment I am reminded by my amazing 3 boys, friends, our puppy Keeper, sunshine and God that we do have a happy life.  That right now I have so many blessings.  There isn’t anything holding us back from the fun we’ve had before stage 4.   We are happy… we just aren’t carefree.

So, I balance all these feelings- fear, isolation, anger, joy, hope.  And, we make life as normal as possible for our family. I pour myself into my work at Hope Scarves, I find time to nurture my soul.  I eat healthy and I also let myself enjoy a nice glass of wine on a summer evening.  I enjoy time with by 3 boys, “Team Mac.”  I spend time with friends and engage in life.   I research and learn as much as I can about my disease.  I hold on to as much of the old “Lara” as I can in the new normal.

Pet scan next Thursday, June 19th.  This will show us if the cancer is spreading or responding to treatment.   Then, we will make a plan for the next 3 months- either changing treatment or holding steady with current plan. Regardless, the next 3 months will include climbing sand dunes, fly fishing on the Brule River, cannon balls, oberon, sailing on the big lake and… fear, uncertainty and sadness.  That’s life with metastatic disease.

happy summer…
Lara

Face of Hope, June 2014 – Wendy (Louisville, KY)

1. For whom have you been a caregiver and what has it meant to you?

I was a caregiver every day for 6 weeks to my wonderful mother, Nancy J. (Koenig) Buckman. She was diagnosed 4 yrs earlier with lung cancer but it was a small manageable spot in her lower left lung. She went through surgery to have that lower lobe removed, then only required 4 chemo treatments and she didn’t lose her hair (something was she was REALLY concerned about.) She was then was given all-clear reports for 3-4 yrs, but in July 2013, she began feeling badly, with rather normal symptoms of just being ill. However, by mid-August, she wasn’t getting well. Then, Labor Day night she was rushed to the hospital with what was first thought of as a stroke, only to find she had 11 spots on her brain. She then went right into radiation treatment but already was having problems with motor skills. She was never really able to walk again very well, and speaking quickly became a problem. She passed away about 6 weeks to the day on Oct 18, 2013. Being with my mom every day during her battle was heart-breaking yet, such precious moments of just slowing down life and being with the one you love. I have sweet memories of holding her hand every day, reading out of the bible to her, playing music, telling funny stories, watching old movies….

2. How did you or your loved one become connected with Hope Scarves?

It was meant to be that I learned about Hope Scarves. My mom hadn’t been diagnosed more than 3-4 days when I saw a spot on WAVE3 about the organization. I knew immediately I had to contact them because the radiation doc said this time she would lose her hair. My mom came from the generation that it was important you were “put together” and dignified in your grooming. Therefore, losing her hair made her feel very “naked.” I knew special scarves and hats could ease things… Hope Scarves responded immediately with the most beautiful scarf, packaged beautifully like it was Christmas for my mom!

3. What are ways you provide(d) hope and strength to your loved one throughout her battle?

Just by being there every day and talking about “Hope” because she knew there were “small victories” that could be accomplished along the way and in the last week when she knew she was dying, we talked about how beautiful Heaven would be and how she would be with her mom and dad.

4. What would you tell someone who is thinking about sending a Hope Scarf to a friend or loved one battling cancer?

It is a beautiful, MEANINGFUL gesture, it carries such depth to the experience, rather than it just being a piece of material to be put on one’s head. It truly provides sunshine and hope when using it because it is also accompanied by a letter from a cancer survivor. My mom’s survivor was a 74 yr old lady named Nancy… I know hand-picked since it was my mom’s name… VERY special to us as her family.

5. What is your favorite inspirational quote or words to live by?

Now faith is being sure of what we HOPE for and certain of what we do not see. Hebrews 11:1.

6. Please share something you learned having gone through cancer with your loved one?

That you are stronger that what you think you are and that your loved one is stronger than you might have ever thought that person could be! For me, I have to put my trust in God and it did, to get me through… I relied on the fact that His mercies were new every morning.

A picture of Wendy (on the left) wearing her mom’s scarf around her waist at the Outrunning Cancer marathon in April 2014.
wendy palazzo 2