Quote for Jenny

Because life is a living, breathing work of art, you are a painting as you go. Be a masterpiece. Drink in life. Laugh too loud. Compliment others constantly.
—Nicole Johnson author, performer, motivational speaker

In honor of my friend Jenny who passed away last week from a cancer very similar to mine...this quote reminds me of her. She was truly amazing and lived life SO fully. There is much to be learned from her. She did so much in her 23 years... Love you, my friend.

Today, I am grateful for Jenny's friendship, my friends, family and God.

Rach

Hi!!

Just a quick hello as I'm enjoying fall "break" which hasn't been a complete break but rather catching up on other stuff...but that's ok!

I wanted to share some great quotes that related to my life. I got them from the supplement to CURE magazine's Fall 2009 Issue about Surviving Well: When Treatment Ends, Surviving Begins.

"Being told you are cancer-free is not the same as being free of your disease" -Julia Rowland, PhD, Director, Office of Cancer Survivorship, NCI

"Permanent survival is roughly equated with 'cure,' but the person who has come through a cancer experience is indelibly affected by it." - "From Cancer Patient to Cancer Survivor: Lost in Transition," Institute of Medicine

"Whether good or bad, life changing situations often give people the chance to grow, learn, and appreciate what's important to them. Many people with cancer describe their experiences as a journey. It's not necessarily a journey they would have chosen for themselves. But it sometimes presents the opportunity to look at things in a different way." -"Facing Forward: Life after Cancer Treatment" booklet, NCI

"As cancer evolves into a chronic illness, the challenge will be in living life to the fullest extent possible, given long-term and late effects of treatment. These include not only physical effects, but emotional and socioeconomic effects as well." -Debra Thaler-Demers, RN, OCN, Survivor

Today, I am grateful for family, friends, God, a wonderful weekend full of fun ahead to finish up fall break!

Rach

Grandma's Eulogy from her Children's Perspective

This is the eulogy given by my Uncle Mark and written by my mother's brothers...

I'm Mark, the oldest son and speaking for my brothers and sisters, I would like to tell you about the amazing mother we had.

We first would like to thank all of you for taking time from your busy schedules to be here and to help us celebrate our mother's life. Also, thank you Father for having our Mother's funeral at Holy Cross. Our family has a lot of history here. As father said, our family helped to build this church.

Our mother's father, Edward actually came over from Germany to go to the seminary. After he left the seminary, he got married and eventually settled here. He had eight children and Mom was the youngest and by quite a margin. It must have been a very devout family since two of Mom's sisters became nuns. Our Mom was born, baptized, went to school and was married here.
She lived here for 50 years and raised all of her children here. All of her children went to Holy Cross and grew up in the same house that she did.-a little house with one sink-can you believe it? This strong religious foundation would help her later in life as a wife and mother.

Now I now would like to share some thoughts about our Mom starting first with some comments from my brother Vince, whom Mom liked to call her baby:

"My mom was a great role model and I learned a lot from her and the people she influenced. As far back as I can remember, our dad was sick, in and out of the VA hospital, and couldn't keep a full time job. Because of my dad's condition, mom had to wear many hats in our family. She did it all. She was like a single mom but in addition to taking care of five kids, she had to take care of my dad too. "

"As I became an adolescent my mom went back to work full time. I learned I could get away with a lot of things because I didn't have much "adult supervision". By that time, I was looking up to my older brothers who weren't exactly angels either. I learned a lot from them, some good and some not so good."

(In looking back, I wish I had been mature enough to help mom more.)

"Somehow I managed to stay out of too much trouble. Shortly after I turned seventeen, my dad passed away suddenly and it was just my mom and me at home. She tried to control my behavior, but at five foot two, she couldn't stop me. I had no fear and learned I could get away with even more."

"My mom rarely told me what to do. However she always questioned me-is your homework done, why do you stay out so late, etc? In her own way, she was teaching me about life, I learned a lot of lessons the hard way and later realized she was just trying to help me."

"I also had four older siblings that were examples for me to follow but Mom was a role model for them and, in turn, they became role models for me."

"My mom lived a good life. She had faith in God and was a great example for all of us. She rarely complained about anything throughout her life, even near the end."

Now I would like to share some thoughts from my brother Jim:

"Mom was the hardest worker I ever knew. She was a great cook, house cleaner, banker, scheduler, car pool driver, bill payer, disciplinarian (at least for two of us), clothes washer, tutor, volunteer and friend. Our clothes were always clean and pressed. If we tore a hole in our pants she sewed them up and they were ready to go the next day. Our house was always spotless and everything had a place. She didn't have to tell us very often to "put something away". We just accepted it as the right way to live." "She put her family first. She somehow managed to sacrifice and save enough money to send 5 kids to Catholic grade schools and high schools. Extra money was spent on her kids, not herself. I am sure there were times she would have liked a new dress but that rarely happened." "She always stressed the importance of working hard in school and getting a good education. Neither Mom or Dad finished high school. She had to drop out and go to work when her father lost his job during the Depression." "Mom was proud all of her kids graduated from college. Though she never said it, I think it was one of her goals." (In looking back, she always encouraged us to have jobs-cutting grass, delivering newspapers, etc. and would say "Save your money so you can go to college.) "She rarely complained and didn't need much to be happy. God, family and friends were important, everything else was secondary. She was never jealous of people who had more than she. Big houses, fancy cars and expensive clothes didn't impress her. Integrity and respect for others had more meaning and opened the door to more long and lasting friendships. Mom made lots of friends at her apartment and nursing home. People loved her because she always treated them with respect and never complained about her life and the hand she was dealt. God had a plan for her and she was OK with it, no need to burden anyone else." "Now that she is in heaven I am sure I will be calling on her again to help me get through the bumps in the road ahead. I know she will be there for me and the entire family. Her greatest legacy is the great family she leaves behind. She showed us how to be good parents and what is truly important in life." We love you Mom! Thank you for being such a great mother!

Today, I am grateful for a wonderful weekend in California with my mom, friends, family and God.

Rach

National Pain Awareness Day

In honor of National Pain Awareness Day, I thought I'd share one of their publications with you (you can also find my story on the front page)

Pain Community News

I am in Santa Ana, California speaking tonight at this event with the Cameron Siemers Foundation for Hope...I'm really looking forward to it!

Today, I am thankful for so much and an amazing week-celebrating my grandma's life, having a triple date with inspiring people and sharing time with friend and family.

Love,
Rachel

Grandma's Eulogy

This is the eulogy I gave at my grandma's funeral on the behalf of my cousins and I.

Grandma's Eulogy
by Rachel and Gabe

I’ve been asked to speak on behalf of the 11 grandchildren and 3 great-grandchildren. My name is Rachel; I'm one of the lucky 11.

Before sitting down to write, I asked each grandchild to share one's thoughts and memories on what made Grandma so amazing. I tried to simplify these memories into a lasting legacy of three things: family, faith, and cleanliness.

I'd like to first touch on her devotion to her family, particularly to her grandchildren.

Initially, I was surprised that as the dozens of memories poured in, very few of them overlapped. As I thought about why, though, it makes sense; Grandma always had a way to make each of us feel special. This was her gift.

For example, Mares fondly remembered such activities as Easter egg hunts and swimming. Mark immediately recalled thoughts of board games and cards, including Grandma's mischievous knack for winning while pretending to be completely unaware that she was ever holding a decent hand. Matt and I remembered the sleepovers and waking up to the smell of eggs and toaster waffles in the morning.

Realistically, it was simply that she wanted nothing but the best for her family. In fact, as Christine, Kyle, and Jack noted, "She was always concerned with us doing what made us happy."

Whatever the memories, it's hard to argue that our passions became her passions.

Second, I'd like to confirm her unwavering 'faith'.

In spite of a tough life, Grandma was a rock. Seldom overly vocal, it was her sound actions, backed by a strong faith life, that spoke for her. Maggie commented, "The past couple days as I have been thinking about her a lot, I have been trying to "be like Grandma" and quit my complaining."

This isn't to say that Grandma didn't vocalize her thoughts when deemed necessary. In fact, Jack remembers Grandma consistently reminding him to sing at church because it counted as praying twice!

A quote I love sums up Grandma's faith well. It states, "The harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; it is dearness only that gives everything its value. I love the woman that can smile in trouble, that can gather strength from distress and grow brave by reflection. 'Tis the business of little minds to shrink; but she whose heart is firm, and whose conscience approves her conduct, will pursue her principles unto death."

Lastly, I'd like to touch on her love of cleanliness.

If you know our Grandma, I'm sure you understand why 'cleanliness' is getting the same attention as 'family' and 'faith' in her eulogy. I don't know if it was living through the Great Depression--where she learned the importance of taking care of things--or if it was simply her God-given personality, but whatever it was, Grandma was obsessed with cleanliness. In fact, she was one of the tidiest people I've ever met, even through her final days; a sentiment echoed by many of the grandchildren. Says Maggie, "The few times that my house is super clean and well organized, I think of Grandma and think maybe it would be up to her standards--if only for an hour or so."

Grandma-it's safe to say that you will never be forgotten. Your love for family brought us together today, your passion for faith is the shining example that will keep us moving forward, and your love of cleanliness, well, it taught us to care.

Thank you for everything. We love you.

Grandma

Rest in Peace, Grandma. You were loved by many and I don't know anyone who didn't love you. Honestly, if there was ever a person who I never heard complain or say anything bad about others, it was you. And you had many things in your life to complain about like losing your husband when you were 53 and before that, dealing with a sick husband and raising 5 kids. You are my hero. Strong in your faith and spirit and quiet in your ways.

I am grateful for your life and the blessings it bestowed on so many.

Love,
Rachel

Time for a Quote...

Hi. Honestly haven't felt like blogging in awhile...if you haven't noticed :). I've been enjoying life though!

And my husband was mentioned on this list of 35 Unique Entrepeneurs That are Changing the Business World-The Rise Underground!!

So proud of him...he truly deserves it after all the hard work he does!

And now for the quote..

“Don't wait until everything is just right. It will never be perfect. There will always be challenges, obstacles and less than perfect conditions. So what. Get started now. With each step you take, you will grow stronger and stronger, more and more skilled, more and more self-confident and more and more successful.” -Mark Victor Hansen

Today, I am thankful for friends, family, God, experiences and life.

Love, Rachel

Team Sarcoma

It's International Sarcoma Week!

In 2006, I was able to participate in Denmark during this week to raise money and awareness for sarcoma. Askin's Tumor, the cancer I had, is a type of sarcoma.

Check out the Liddy Shriver Sarcoma Initiative website for the details for this year's event and how you might be able to get involved!!

http://www.team-sarcoma.net/

May they be blessed on their bike riding and journey this week!

Today, I am grateful for friends, family and God!

Rach

Strange Sights

I apologize that I have been sucked up into non-stop schoolwork, work and my internship amongst other time-consuming things and some minor health stuff (but all turned out ok or so we think :)).

Anyways, wanted to a couple of funny pics from my life from the past few weeks:

A man walking "the world" down the street with his dog?

The speedometer of my car registering at "0 mph" on the highway and saying there is no gas left while my husband is driving...it broke down soon after this (for the 5th time) and yeah, I needed a new alternator. It's good as new!

Today, I am thankful for a day off to finish up schoolwork and catch up on sleep, for friends, family and God!

Rach

Fight Like a Girl

Fight Like a Girl by Bomshel

Little girl alone on the playground
Tired of gettin' teased and gettin' pushed around
Wishin' she was invisible
To them

She ran home cryin'
"Why do they hate me?"
And Mama wiped the tears and said
"Baby, you're brave and you're beautiful.
So, hold your head high.
Don't ever let 'em define
The light in your eyes.
Love yourself, give them Hell.
You can take on this world.
You just stand and be strong
And then fight
Like a girl."

At 31 she was wheelin' and dealin'
Kept on hittin' that same glass ceilin'
She was never gonna be one of the boys, no
She coulda gave up on her ambition
And spent the rest of her life just wishin'
Instead she listened to her mama's voice sayin'

"Hold your head high.
Don't ever let 'em define
The light in your eyes.
Love yourself, give them Hell.
You can take on this world.
You just stand and be strong
And then fight
Like a girl."

Oh, with style and grace
Kick ass and take names

Ten years of climbin' that ladder
Oh, but money and power don't matter
When the doctor said "the cancer spread"
She holds on tight to her husband and babies
And says "this is just another test God gave me.
And I know just how to handle this"

I'll hold my head high
I'll never let this define
The light in my eyes
Love myself, give it Hell
I'll take on this world
If I stand and be strong
No, I'll never give up
I will conquer with love
And I'll fight like
Like a girl

Ooh

Inspirational Song!

Today, I am grateful for a wonderful marriage, family, friends and God.

Rach

Happy 1st Anniversary!

Happy 1st Anniversary Gabe!

It's been an awesome year together. It flew by!

Love,
Rachel

I am grateful for so much!

Great Conference!

I just returned from an amazing conference with the American Pain Foundation in Minneapolis, MN. It was great to see old friends and meet new people. The people that make up this organization are dedicated and do wonderful things for people that live with pain-pain of all types- from disease, from accidents, etc. Many of them volunteer endless hours to fighting for the over 75 million Americans that suffer from chronic pain! (That does not account for those who experience acute pain every year from injury or illness.)

If you are someone living with pain or know someone who is, I highly recommend visiting painfoundation.org!

Now, time to rest up and recover for another non-stop week!

Today, I am grateful for amazing organizations, wonderful opportunities, friends, family and God!

Rach

Another Great Night

The beginning of what I have dubbed my 'craziest week of the summer' has officially begun! It consists of lots of working, starting summer school classes, a graduation party, a baptism and a 4-day conference! It kicked off with a full day of camp-the camp I volunteered at all week was for disabled children and it was AMAZING! I definitely got very worn out but was sad to leave the kids as I was really enjoying getting to know them and see how much most of them loved the art projects. I even was able to work with a few 1-on-1 for a bit.

After camp yesterday, I had a meeting and then spoke at the American Cancer Society's Relay for Life (they gave me a scholarship for college this year)! It was a great turnout with lots of amazing survivors! I got teary-eyed as I carried the baton and led the lap around the track for the survivors-all proudly sporting the purple 'Survivor' t-shirts. On the second lap around, all the supporters, caregivers, etc. joined the survivors including my husband, parents and some of the in-laws (thanks so much for coming!). I also got to see some old friends from an amazing camp for kids with cancer that I have been pretty involved with over the years. They even had free massages for the survivors, which was much needed after the week at camp!

Now, off to find extra energy for this week!

Today, I am grateful for all the amazing opportunities and people that I meet, support of friends and family, hope and God!

Rach

Getting Back in the Groove

It's been a slow journey back into a regular workout schedule...I was roughly doing 2 days a week with a friend at school but since spring classes are over, that's not practical.

As I already knew, working out makes me feel better after I get the motivation to get up and do it. It also helps my pain levels. This week is rough because I am working at a kids' camp for most of the day (as a separate part of my internship) and am so exhausted when I get home. Hopefully I can make it one or 2 days!

So, I joined the gym that I used to belong to (a different location though)...and figured out what works best for me: group classes (pilates, cardio, etc.); a free yoga class at another place for cancer survivors (the room is awesome-it feels like you are in the middle of the forest with birds chirping and there is a big garage door that is opened, if the weather allows, that has a screen on it); sometimes walking outside-preferably with someone or music; machine workouts while watching TV and/or listening to music (the gym I just joined has personal TVs w/ cable on every machine!).

What works for you?

Today, I am grateful for a wonderful week at camp, friends, family, God and sleep :).

Rach

People Fascinate Me

I am doing an art therapy apprenticeship right now (internship) and it is so interesting. Because of HIPAA laws, I can't go into details but our patients' stories are all so unique and interesting! Every person comes with their own histories and reasons for needing therapy in their life. It is amazing to me how much these people and the ones around them have had to go through in life-on top of the medical aspects or in other cases, the complex set of medical reasons piled on top of each other!

It is giving me a new sense of trying to respect what people are going through because we can never really know just by "looking" or talking to someone...just how I now appear healthy and "normal" (whatever that is!) to a stranger...

The apprenticeship is also giving me more admiration for art therapy and what little things can do for healing or making someone's day!

Today, I am grateful for a neat apprenticeship, time for reading for leisure this week, getting certified again in CPR, friends, family and God!

Rachel

Article in the Newspaper...

Last week, in honor of my 5 year anniversary, I was on the front page of the St. Louis Post Dispatch.

Click here for the article.

Today, I am grateful for a fabulous few weeks off school, lots of great people in my life that I can truly trust, a great internship, friends, family and God!

Love,
Rachel

The day every cancer survivor hopes to see...

From my journal one month before the surgery in 2004

Is TODAY for me. The day that is especially sacred to people who have had cancer more than once.

Hard to believe, I know, because I cannot believe it, but there has been no significant sign of cancer in my body for 5 YEARS as of today! In other words, I have been in remission for 5 years! It doesn't necessarily mean that the cancer won't come back or that I won't get other cancers, but the chances are less and 5 years is a very long time-way longer than any other period of reprieve that I've had in the past.

5 years ago today I had an extensive surgery that removed a small Nerf football sized Askins Tumor that had grown between my heart, lung, pulmonary artery and spine. The surgical team separated and removed small pieces of rib, sliced and put back together 3 major muscles in my back, moved organs out of the way and successfully took out the cancerous tumor...the tumor that had somehow died inside of me with very minimal treatment. Still crazy, still hard to believe to this day.

YAY FOR LIFE! I feel so blessed and thankful for so much :).

Lots of love,
Rachel

The Funny Thing about Medicines

I have obviously taken way more medicines than I can keep track of over the past 10 years...and still continue to take a fair amount. So, when it comes to taking more than is required, I am hesitant, even if it will help.

I'm not sure where it stems from except maybe I don't like the extra side effects or putting even more chemicals in my body. Even though Zofran (amazing nausea medicine-can come in pill, IV, etc. form) helps a ton and I can't imagine life without it, I usually wait until I absolutely need it before I take it. This is instead of taking it at the slightest onset of nausea and catching it early. I probably end up setting myself back playing catch-up with the meds (that's what the doctors and nurses used to tell me when I was on chemotherapy- take it early). I also don't like essentially the only side effect of Zofran..

So, while I sit here with another cold or possibly bad allergies, I am hesitant to take medicines...ones that make me feel funny or cause huge headaches if taken for more than a couple days and so on...

Today, I am grateful for a day on the couch to hopefully feel better, a fun week planned next week, friends, family, God.

Rachel

Quote to Ponder

I picked up a book that I had attempted to read awhile ago and never really finished it and noticed that I had marked a little section of the book...which usually means it's good or meaningful or made me think...

This book was by Robert Hellenga and the marked section said, "Which of us doesn't have a similar ghostly double wandering around somewhere out there in the big wide world? A self from whom we parted company long ago, at some unlikely crossroads? But do we ever encounter these ghostly selves? Do our worlds ever intersect?"

It made me think about-as I do sometimes-how different life would be without the history of cancer. Who would I be? What would I be doing? Who would be in my life? It's anyone's guess really and a big What if?

But, truthfully, overall I'm pretty happy with the life I have now and how it all turned out :).

Today, I am thankful for friends, family, wonderful husband and God!

Rachel

The Ending and Beginning of Something New

I ended the semester yesterday with a final critique for a drawing class and today I start my art therapy apprenticeship!

I wanted to write about how strange dreams are though. Late yesterday afternoon, while thoroughly exhausted, I fell asleep watching TV on the couch. I suddenly was on a study abroad trip or a vacation with some people from my art classes. Then suddenly we were all outside and a seemingly friendly horse came up and was licking my arm like crazy. He proceeded to start gnawing on my arm (the one that still has some pain and numbness but is status quo and manageable) to where he was becoming aggressive and acted like he was going to eat me. His owners just stood aside and did nothing as I yelled for help. Thankfully, for some reason I was able to get away and run quickly into a house. The people inside were nice and kept me safe as the horse was outside on his hind legs.

I was really happy to wake up and felt like my arm still hurt from the experience. I don't normally remember my dreams very well but this one was very vivid.

What kind of crazy dreams have you had?

Today, I am grateful for about a month off of school, music, friends, family and God.

Rach

Hi

Hi everyone-I missed you!

I'm in the midst of finals and final projects for the semester, so I'll probably be more brief than I'd like.

Let's see...

-I'm now a year older since I wrote last-I'm 26-yay!

-I was sick on and off from the end of February until the middle of April with colds/sinus infections and then a temporarily swollen neck that thankfully turned out to be nothing (we feared something serious was happening with my thyroid...poor thing has been on meds for years)...I am finally feeling better!

-In happy news, I had my first joint speaking engagement with my husband to about 600 high schoolers-very cool experience!, had another great speaking engagement at a high school senior scholar banquet, enjoyed lots of great times with family and friends-new and old and some that have reemerged from the past to much delight!

-I technically work 3 different jobs so between that and 18 hours of school this semester, that has taken the majority of the time.

Hopefully I'll write more soon.

Today, I am grateful for life, happiness, friends, family and God!

R

Poem to Share

While I still feel that I am on a semi-break from the blog, I wanted to share a poem that I wrote over the weekend when I attended my first art therapy conference...

April 4, 2009

My heart is peaceful
I am where I should be
Learning my path in life
My creativity feels free
Being around art therapy
I do not feel tied down
I am ready.

Today, I am grateful for so much including friends, family and God!

Rachel

Great Poem...

You can shed tears that he has gone,

Or you can smile because he has lived.

You can close your eyes and pray that he'll come back,

Or you can open your eyes and see all he's left.

Your heart can be empty because you can't see him,

Or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,

Or you can be happy for tomorrow because of yesterday.

You can remember him and only that he's gone,

Or you can cherish his memory and let it live on.

You can cry and close your mind,

Be empty and turn your back,

Or you can do what he'd want;

Smile, open your eyes, love and go on.

-Author Unknown

Love,
Rachel

A Different Spring Break

I was to start my new job, have a friend come in town, and a big to-do list. But...life happens.

I was at my new job for about 2 hours on Tuesday when my husband called me and said that his grandpa (who had gone through emergency quadruple bypass surgery the day before) was not doing well at all. That they had also found a virus around his heart when they did the surgery and his organs were failing.

We both raced home, packed up the car and raced west a couple hours to where he was in the ICU. On the drive, we learned we would not make it in time-he had passed away.

It's been a shock to everyone. He was 73 and had great health before this and his parents had lived to be very old (one is still living in fact).

My husband was very close to his grandpa and they shared a love of fishing, amongst other things.

I actually knew his grandparents before I knew him. So, it's really a great loss for all. He and Gabe's grandma had been married for 53 years-true soulmates and a wonderful example of an amazing marriage. He will be truly missed. He was an amazing man.

Thank you for your kind words and prayers.

Today, I am grateful for having known his grandpa, family, friends and God.

Rachel

Spring Break

I will be taking a 'spring break' from the blog (like I did last year) just to let you know. Hopefully, I'll be back soon!

I am grateful for so much!

Love,
Rachel