The middle of the night fears

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When I reflect on my true “skills” in life I would rank sleeping at the very top.  My whole life I have been a great sleeper.  I put my head on the pillow, fall fast asleep and don’t stir until I wake in the morning.  I never understood the restlessness people with sleep problems would share.

Now, I get it.  I haven’t had a complete nights sleep in months.  Over the past several weeks it has gotten progressively worse with 3am wakings that lead to all out panic attacks.  Luckily Jay is by my side through it all and I get through the night just as I do each day… moment by moment.  Breathing deeply and finding comfort in the arms of others… sometimes a little xanax helps too.

My middle of the night “episodes” seem to be getting under control and I don’t wake in panic anymore. Now I just wake up and think and stare at the ceiling and feel for different aches or pains I fear are cancer… and write.  I write to my kids, friends, family.  I write about good memories and happy adventures and eventually I fall back asleep wrapped in the happy memories of my life.    Unfortunately my writing usually wakes up jay just as much as my panic attacks, but he’s a good sport.

Tomorrow I will have a bone scan.  Another test to look at my bones and disease in a different way to help the doctors have a clearer picture of what is going on.  So if our track record holds up I am prepared for them to tell me they have found even more cancer.  At least I am going into it prepared for the worst and maybe, just maybe we will hear some “good news.” But, I’m not going in planning on the good news like I so confidently did last time. That fall was just too hard.   After we have this additional information we will make a decision about treatment.  I met with two oncologists this week and both agree that if the bone scan doesn’t show any additional progress we will hold steady on the current drug I am on to make sure it has had enough time to “work.”  We will rescan in 8 weeks and see then if there truly is progression or if this drug holds me steady.  If the bone scan shows additional growth right now then I believe we will look at a more aggressive change in treatment.   But, we haven’t talked specifics, because I haven’t wanted to know yet.

So, I continue to live for the moment.  I found myself laughing and enjoying a beautiful evening last night with friends.  My friend Dj’s parents had us over for an impromptu dinner and through the conversations of kids, family, summertime plans, etc… I just let go of cancer and enjoyed the evening.  It was nice.  Despite our continued bad news I am determined to keep trying to live our life – to just be happy in the moment.  Not because I am denying cancer but because at that moment cancer didn’t matter.  I was not in pain, needing to make a major medical decision, etc… I could just live.

A dear friend and fellow stage iv breast dance survivor, Mary Ann, recently shared this question. If you had 5 minutes to live would you spend one moment being sad?  I know I wouldn’t. I would ring out every moment of happiness that I could from those 5 minutes!   That is how I am trying to live my life.  It isn’t easy – I cry every day.  I throw things and I lay on the couch exhausted after several hours of playing with the kids.  I feel like I am much more optimistic in this blog then I can be in real life sometimes.  But, I do my best.

So, another scan Friday (today I guess now).  More waiting and anxiety.  However, I told them I didn’t want to know the results until after the weekend.  My 3 boys have plans for mothers day- we have a trail to hike, some fish to catch, a picnic to enjoy and I don’t want to have it overshadowed by bad news or trying to figure out treatment plans.

Happy mothers day to all the mama’s out there and to those with angel mama’s.  May the love and joy your mother shared with you be celebrated whether you can hug her or just hold her memory close.  To all those who are moms – treasure each moment with your babes.  Hold them close and don’t take anything for granted.  I’m sure our boys are overwhelmed with the amount of hugs I am slinging these days.  I basically don’t let them leave or enter a room without a hug.  Jay does the same thing with them…  I think we all just want to hold each other as much as we can.

with hope,
Lara

I have new spots of cancer in my bones…

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On Thursday we learned that my cancer has spread to two new spots in my bones- my femur and hip. Although the PET scan from the week prior showed only the original tumor, an MRI was done to look more closely at the original site and in doing so revealed two small new spots the PET scan didn’t detect. We are crushed. We put a lot of hope in the idea that perhaps this one spot would be all we dealt with for awhile and that we could stop the cancer from spreading. It is bad news that it has spread so quickly and possibly isn’t responding to the current treatment. However, there is also a chance that I haven’t been on the current treatment long enough for it to be making a complete impact. As has been the case since the start – there are several options to try next. None of which are “wrong” nor do we know which one might work. This weekend, however, was the first weekend in May in Louisville and instead of cancer, this weekend was filled with Derby. We welcomed Jay’s parents, Rick and Chris and his brother Erin and his wife, Amy, as had been planned for the past year. It was a hard weekend given the news we had gotten and my overall feeling of despair that I am already progressing in this disease. However, we tried our best to just live each day to the fullest and be thankful and joyful in the day. It was a lifelong dream come true to be at the derby for my mother in law, a lifetime horse lover! Our family was gracious and supportive of how much I could do each day and we all had a nice time. Two full days at Churchill Downs complete with mint juleps, big hats, winning bets and lots of laughter. We also celebrated The James Graham Brown Cancer Center and the work they do at their annual Julep Ball Friday night. I love getting dressed up and I’m not sure which of my three dresses was my favorite! In several moments throughout the weekend I forgot about my cancer and just laughed and cheered and took in the spectacle that is Derby weekend. It was hard to be in such a happy place when I felt so sad. But, that’s how you live with stage IV cancer. One day at a time. Sometimes one moment at a time. Now on this glorious sunny day when I would like to be playing ball with my three boys – I am sitting in my room exhausted and trembling in fear. This week will be filled with doctor appointments and research about clinical trials. We aren’t loosing hope. We know there will be some good news in our future. That something will slow the progression and give us a little more time to live out the adventures and joy we know lies ahead for our family. Enough staring at a computer screen and feeling sad. I am headed out to watch the boys jump on the trampoline and listen to them laugh. We have today. One day at a time. with continued hope, Lara

Face of Hope, May 2014 – Joan (Atlanta, GA)

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1. How did you become connected with Hope Scarves?

I had no idea such a wonderful program as Hope Scarves existed until the daughter of a friend of mine sent me one. Amy Keller, a Louisville gal and mother of two young boys, was just finishing up her own battle with breast cancer when she heard of my relapse.

2. If you donated a scarf please share what this experience meant to you or if you received a scarf and story please share how this impacted your healing journey?

Receiving the beautiful scarf from Amy was like an infusion of hope from a fellow traveler. Reading the online stories of so many young women who had fought and succeeded in their battle against cancer was tremendously encouraging. The scarf was also a conversation starter at the gym, supermarket, and church helping me connect with others who had been in my shoes or knew someone who was.

3. What are the things that provided hope and strength to you throughout your battle?

Of course, my family, friends, and my amazing dog, Emily were an invaluable source of support for me along with the wonderful staff at the Emory Winship Cancer Center here in Atlanta. Every test, statistic, and treatment were thoroughly explained with all their pros and cons. I think we’re all lucky to live at a time where we no longer blindly follow a medical protocol, put are partners in our treatment and recovery. Knowledge really does give one a sense of power.

4. Where are you currently on your cancer journey? Tell us how you are living life over cancer.

I finished my last chemo in November and since then have been taking an aromatase inhibitor. I will take this for five years or longer perhaps. The side effects are not too bad, fatigue and sore joints, but if they keep another recurrence from happening I’ll be thankful. I’m back taking long walks with Emmie and swimming about 7 miles a week. For me exercise has been a wonderful healer, especially of the mind.

5. What do you wish other people knew about Hope Scarves?

I think I would like others to know that there is this wonderful small gift of Hope scarves that they can send to a friend or even acquaintance that just “says” it all. When one’s own words won’t suffice, the stories of other Hope Scarf recipients can be so comforting for the cancer patient.

6. What would you tell someone who is thinking about sending a Hope Scarf to a friend battling cancer?

See above.

7. What is one of your dreams or goals for the future?

I would like to give Mt. Kilimanjaro one more try. My first attempt at age 22 ended with me stricken with altitude sickness about 500 feet below the summit.

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

Carpe Diem!

9. If your friends or family had to describe you in two words, what would those be?

Impatient and compassionate (according to my husband).

10. Please share something you learned having gone through cancer – either as a survivor or as having a loved one with cancer.

Life is fleeting. Make every day count. Do something for someone else!.

A roller coaster of emotions… ending with good news!

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Today was an emotional day to say the least.  I spent the morning with Bennett in his kindergarten class, just sitting in wonder of the little miracle who I felt kick inside me the first time I heard the words, “you have cancer.”  So filled with joy to see the kind, smart, witty little boy he has become.

Then, I went to say farewell to my friend Sandra.   It was hard to look at the smiling pictures of her throughout her life and listen to people talk about how unfair this disease is and how quickly it spread throughout her body. As my body trembled I focused on the example she was to me and so many others about living each day to the fullest.

5359cbe9ac7ee94b30cdd137Then Jay and I went to my PET scan.   Luckily we have a dear friend who is a radiologist so we had our results quickly.   The scan revealed that there is NO PROGRESSION.   No new spots of cancer.   The spot in my sacrum is still there- which is to be expected.  But, no growth beyond this spot.

We are so happy to be blessed with this news.  We sat on our deck with a bottle of our favorite champagne and toasted today.  Today we laughed and celebrated this good news.  We don’t know what the future holds, but on this roller coaster I am learning you have to celebrate each moment of good news.

Now, back to life.  No more living in fear of this test or if each ache and pain I feel is a new tumor.   I have a lot of living to do and I hope the news from todays scan will bolster my resolve that I can live with this disease.   This new reality is crazy.  I will have another scan in 3 months.  We will monitor things closely.  I will continue with the treatment I am on – monthly injections of xgeva to strengthen my bones and daily medications to block the estrogen remaining in my body despite removing my ovaries.  Side effects are minimal and manageable.  Really the hardest for me has been the lack of energy – for those who know me, you know I am used to doing 100 things in a day.  But, I am adjusting.

Thank you so much for all your prayers and encouragement and positive juju today.  It was such a roller coaster, but I am so happy to say that today the ride ended on a high.  I hope I can share many more happy moments and good news with you!

A beautiful angel on Earth and now in heaven

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My heart is heavy as I reflect on the life and loss of my friend Sandra Fleeks.   I met Sandra several years ago through our young survivors group and was immediately touched by her sweet kindness.  She graciously faced metastatic breast cancer and many side effects for two years, but you wouldn’t know it.  She always had a smile on her face and time and love to share to help others.  Sandra died yesterday… and my heart goes out to her friends and family.

Sandra was an active community member, volunteering for many organizations around town.  We were 5357b8584db921e97712568elucky for Hope Scarves to be one of them.  She was our February Face of Hope, you can see her profile here.  https://hopescarves.org/face-of-hope-february-2014-sandra/.  She was also a scarf and story donor and usually one of the first to answer my request for help from survivors at public speaking events, booths or a special event.

I tremble as I face the same disease that she fought for two years and ultimately robbed her of a long, complete life on Earth.  I know she is at peace now and free of the pain she was feeling.  But, I am so angry at breast cancer.  I am so angry that this disease kills so many women each year (41,000) and that over the past 30 years although the “awareness” and “pinkness” has increased exponentially, the death rate has basically stayed steady.   I pray for advances in medicine and that we really, really might actually be able to find a cure to this awful disease so that no more children have to lose their moms.  Selfishly, especially mine.

Peace be with Sandra’s family and may we carry on a little bit of her kind, gentle ways in the work of Hope Scarves.

Thank you Sandra for showing me how to be brave.