Reflections on the Past Year

Having 3 life-threatening bouts with cancer between the ages of 15-21 and all of the various treatments that came with it was intense in many ways.  There were many times that I survived situations that doctors cannot make sense of medically.  Things like getting emergency surgery on a tumor that was strangling the top of my spinal cord and shutting down my body by the hour and causing paralysis (and then regaining all function after surgery).  Or having multiple potentially fatal infections in my blood and going into septic shock (which has a 50% survival rate and that’s with an immune system) when they had already killed my entire immune system during my transplant.  Or surviving the aggressive tumor between my heart, lung, pulmonary atery and spine after I had maxed out on traditional treatments and was given a 0% chance based on cases before mine.  The list goes on but you get the idea…

Because of all the life-saving measures, my body was hit with large and sometimes lifetime maximum doses of things like chemotherapy, radiation, etc.  I wasn’t supposed to make it and everyone did everything they could to give me a shot.  Those treatments can come with consequences-if you live long enough to experience them.  For me, I read and keep myself educated enough to know that my time would come when something else would hit.  Would it be things I was more prepared for-breast cancer, heart issues, etc.? Or would it be another secondary cancer like leukemia?  Would it be something completely surprising?  I knew in my heart that one day, whatever it was, it would come.  I raced against time and accomplished much in my 10 years of “fairly good health” (for me-which still included many long term effects but was tolerable): After over 10 years of college, I got degrees in interior design, psychology, studio art and a dual Masters in Art Therapy and Counseling, I met the love of my life and got married…I traveled to Quebec, Mexico, Denmark, Italy, France, Spain, Portugal, Austria, Croatia, etc….I spoke around the country and in Europe a bit.  I was named Glamour magazine’s Woman of Your Year in 2008.  I tried to make the most of those years knowing what loomed ahead but not what or when.

My right lung had been damaged and “bad” for years-we knew that-from the maximum amounts of radiation on the right side for the tumors-but no one quite realized how bad.   And while I realized it was bad, I just thought I’d keep living with it that way.  I did not have the knowledge to know that a nasty mycobacterium was looking for a spot just like my lung to live and wreck absolute havoc.  And even if I had, it wouldn’t have changed anything anyways.  There are so many theories where these strange aggressive infections can come from but no one really knows or knows how to prevent them. 

I was grateful for the 10 years “off” where life was relatively care-free as far as health things were concerned or at least manageable enough that I could participate in everyday life for the most part.  And then the day came when “shit got real” again.  A cough that I’d have for over a year turned into a frantic call at work where I was told to go home immediately and be quarantined inside my house until they knew if I had TB or not.   It turns out I had the evil twin of TB-a mycobacterium infection that sometimes is actually harder to treat but I wasn’t contagious.  The beginning of treatment was rough but manageable.  I was encouraged that many before me had been able to maintain a school/work life on the treatment.  I felt optimistic but guarded too.  I knew enough to know that my body does not follow the anticipated path in the medical world really EVER-for good or bad.  It has led me to preface new doctors by saying “I am a really compliant patient and I do what I’m supposed to and I try my best to be pleasant.  My body on the other hand tends to have very rare and complicated things happen to it”.  I told my pulmonologist this when I met him over a year ago.  He realized months later that I wasn’t kidding.

As my body got used to the medicines, I felt a little more confident each day and my infection symptoms were lessening.  I even got myself excited about a tropical vacation over the holidays.  Even more amazing, my 4 main doctors all approved of it.  Literally the day after the last doctor gave his blessing, I started to cough up blood.  I knew this was a bad sign but no one knew how bad until my bronchoscopy.  I woke up to talks of removing part or all of my lung and there was a lesion on my trachea that was unknown.

My big serious medical event that I knew in my heart and gut would be coming was officially here.  As the days for the surgery approached, I literally could feel my body slowly dying.  I could not wait to have my lung removed.  I could barely eat and my weight continued to drop, my skin took on an odd tint, massive amounts of nasty gunk came out of my mouth along with night sweats and fevers daily.  Could my body pull off another medical miracle-or as it turns out 3 more?  Could the surgeon who saved my life 10 years before be able to work his magic again?

Fast forward to now, 8 months later and 3 intense surgeries (the first being 12 hours) and 6 months with an open cavity in my chest and clearly my life has somehow been spared again and again.

I’m still processing the events of my life and just feel grateful and blessed because I am just as baffled as anyone else.  I try my best to make the most of my “extra” time here on Earth. 


Post-Surgery Pros

Having a pretty major surgery coming up in a little over a week is kind of like preparing for a trip, except that you aren’t quite sure when you will get to return home from the “trip”.   It depends on how the recovery goes and complications that can (especially with me) arise.  Doctors have frequently referred to me as a “challenge” and “always throwing them curveballs”-thankfully this means in good ways too.  I have been working on my to-do list before surgery and knocking out items daily.

Amongst my pre-surgery anxiety, I have been trying to think of the things I am looking forward to post-surgery and not how I am going to feel when I wake up from anesthesia (groan) and the days following when I will have incisions all over my abdomen and chest and some of my insides moved around again.

I look forward to:

-being able to fly in an airplane again…by the time that I likely will be able to it will have been about a year since I flew and over 2 years since I went on a “real vacation” (that wasn’t for a wedding or conference, etc.).  I would like to spend some time with my husband in NYC and have many friends and places that I would like to see.

-taking a shower without being wrapped in plastic and not having to strategically schedule it around another person’s schedule.

-not having to stress about when I need to order more supplies and dealing with the medical supply company’s website giving me messages that I do not qualify for more supplies (when I will run out in 2 days).

-having my days and weekends free of daily appointments or scheduling homecare nurses (or family members) to do dressing changes.

-not having air constantly leaking out of my side.  I look forward to breathing better and not being short of breath if I lift my arm too high…and not having spontaneous farting noises coming out of it (yes, it has officially farted in a quiet elevator and at church, amongst other places).

-having clean skin that is free of bandages and stickiness left behind from medical tape.  My skin has held up well considering but hopefully it will be quite happy when it doesn’t have to feel itchy, irritated and leaked on daily.

-wearing tank tops and dresses again without my bandage hanging out.  I’m at the point where I don’t really care anymore and do wear them, but it will still be nice not to be looked at when out in public.

-possibly working as an art therapist again and moving forward with life.

-working out and getting stronger and knowing that hopefully I will not get knocked down again any time soon. 


-not having a window anymore!  It’s been “fun” and all, but it’s really time we part ways and “close” this chapter in my life.


How I am Surviving with a Window in My Side for Months

In honor of my 11 year cancerversary of having no cancer found in my body, I decided to think of ways that I have stayed positive and made it through this year with my "window".  Some of these are things I found helpful during my many years of cancer treatments and other things are newer to this particular situation.  There are definitely ups and downs and when I feel good, I try to make the best of it!  I'd love to hear about ways that have helped you through obstacles in your life!

How I am Surviving with a Window in My Side for Months (and Daily Doctor Visits):
  1. Smoothies: Jamba Juice and St. Louis Smoothie are favorites- whey protein shakes with fresh fruit (helpful with healing and on days with low appetite)
  2. "Breathe" or Lung Items: "Just Breathe" ring, lung jewelry, various comfy lung and “Breathe” t-shirts
  3. Lung Art and Inspiration: the wonderful art everyone made me has been finding homes in our loft-many of them on top of our kitchen cabinets.
  4. Support: visitors, dinners/lunches/dates with friends, calls, cards, texts, emails, Facebook messages, etc.  It’s been lovely to reconnect with people and meet new friends along the way!
  5. New Experiences: going to various events when feeling up to it such as Tea 101, lecture about Frank Lloyd Wright's stained glass, book signings, craft fairs, simulation of walking through someone’s life in another country, nutrition and cooking classes, conference about cancer research, Professional Bull Riding, Monster Trucks and the “salty snack” research study (in which they paid quite well)!
  6. Music: live concerts and listening to/from doctor appointments and at home.  For concerts there has been venues big (Scottrade, Hollywood Casino Amphitheater) and small (Ready Room, World Chess Hall of Fame, Firebird, Twilight Tuesdays at the Missouri History Museum, etc.) and all types of music-rap, jazz, country, folk, alternative, rock, German electronic, acoustic, pop, etc.
  7. Trips: since it’s hard to travel (no flying; dressing changed every day) my medical team and family figured out a way for me to go on a 1-night trip to Indianapolis.  It was amazing-filled with live music, yummy food, shopping, a cute B&B and catching up with amazing people!  Gabe and I also were able to do a 1-night staycation at a nice hotel in St. Louis, have some delicious food and feel like we were on vacation.
  8. Exercise: weekly training (walking) for a 5k (maybe a 10k) with a group of employees from the hospital where I’m getting treated (Females in Training).  It’s amazing to feel athletic and stronger than what is going on and feeling like a fighter! I have also dabbled in yoga, MELT Method (for help with chronic pain) class weekly and some Zumba.
  9. Medical Staff: amazing and kind people who go above and beyond-from secretaries to nurses to PAs to doctors to home care nurses-all top notch!
  10. Faith: prayers and positive thoughts from others has been immensely comforting.
  11. Naps/Rest/Massages: I probably don’t do any of these enough but they're essential!
  12. Positivity: knowing one day it will end when I have the next surgery and hopefully be able to move on.  Also trying to look at what is good about the situation and not focus on what could be potentially not be going in a favorable way.
  13. TV Shows and Movies: though I don’t watch that many, they are nice for times I need to lay down and relax. The Emperor of All Maladies was on PBS during a week I was pretty sick and gave me something to look forward to each evening.
  14. Art: engaging in art in my studio or in the sketchbook I sometimes carry to my appointments while waiting.  I’ve also enjoyed making art for others during this time and have been to a few art galleries including a neat show at the Bruno David gallery showing art by Max Starkloff.
  15. Gratefulness: that most days I don’t feel too bad, the horrendous side effects of my infections are pretty much gone and that I’m tolerating the long-term high powered antibiotics pretty well; for my amazing husband, family, friends, God, my medical team; for having a husband that works and can support me and also has amazing medical insurance through his company.
  16. Outdoors: trying to soak up the nice weather when possible through meals outdoors, walking, outdoor concerts and rolling the windows down in the car.
  17. Reading: I have read about 4 books since this began and was gifted an amazing box of new books from a high school friend who works for a publisher.  I have also flipped through some magazines along the way.  They are also helpful for when I’m waiting at the doctor’s office.
  18. Comfy Couch: the lounge part of our large sectional has gotten a lot of use during this recovery-it’s right by large windows with a great view and usually is very quiet and peaceful.
  19. Food: it’s been fun to try new places especially places from Ian Froeb’s Top 100list in the Post-Dispatch!  Some days it's a highlight of the day to eat something delicious or have a dessert to look forward to.
  20. Giving Back: it’s amazing how I’ve been able to be there more for people in my life right now, as a few people are going through their own serious issues-medical and otherwise.  I have also made some artwork for charitable causes, modeled in a charity fashion show and spoke to a couple of groups about my experiences.


10 Interesting Reflections About Living With a Window in My Chest (Yes, a Literal Window)

I decided in honor of my 4 month anniversary (May 9) of the installation of the “window” in my side, I would reflect on how life is with a window-for those of you who haven’t gone through such an experience.  

(For those of you who are playing catch up, I was diagnosed with a long-term serious mycobacterium kansasii lung infection last summer (that I was susceptible to due to a damaged right lung from previous cancer radiation and treatments).  I took strong oral antibiotics for 3 months and then things took a turn for the worse which led to having my right lung removed in November.  Seven weeks post-op I developed a very serious complication called a bronchopleural fistula in which an infection developed in my chest and ate a hole through the stump covering where my lung used to be.  As treatment, I had surgery to install my "window" which is an open cavity in the side of my chest-where 2 parts of rib were removed.  Since that surgery, during the week, I go daily to the surgeon's office to have my dressing changed and on the weekends, rely on home care nurses or family to change it.  I should be having my next (and hopefully final) surgery mid-June.  A recent CT scan showed things looked "as expected" and my remaining lung appears to be stable (I continue to take high-powered antibiotics to treat the original m. kansasii infection).

Now onto my list about living with a "window"...
  1. For entertainment value, I get to experience all sorts of unfiltered reactions and comments to this bizarre opening in my chest, like when a seasoned nurse blurted out, "This is the biggest cavity I've ever seen” and seemed scared.
  2. Flying is clearly out of the question. As one friend put it, "If the luggage shifts in the plane, imagine what your insides would do in the turbulence."
  3. Beyond the health risks of flying, daily hospital visits and at-home nursing are required to keep the cavity clean, leaving me physically tethered to my hometown, and unable to work. This is positive, though, as it leaves more time for staycation activities, from concerts to systematically knocking off the top 100 restaurant list. Staycations are ridiculously underrated anyways.  It has quickly become the “Year of Doctors, Concerts and Restaurants and New Experiences”.
  4. There is nothing like the feeling of a freshly packed chest cavity. Seriously, you should try it.  When the gauze is removed temporarily, there are whistling noises and it makes it hard to catch my breath.  The process also resembles that of a magician when he/she pulls out a never-ending scarf.
  5. I treat our loft like an art gallery, taking each opportunity to show off my artwork to fresh-faced home care nurses. I've contemplated throwing a price tag on the pieces and seeing what happens.
  6. At the hospital, I'm able to live the life of a "celebrity", which in the medical world simply means I know everyone from the valet team to the nursing staff (even when I have never used the valet services).
  7. I always have to be prepared for a leaky window, which means that the standard items in my purse consists of medical napkins and tape.  I also have to be alert as things have almost gone into the “window” that are not supposed to such as my niece’s head and the corner of a cabinet.
  8. The standard shower items are even better, as they include Press n' Seal (mine happens to be Christmas-themed) and plastic tape.  I must strategically schedule each shower around someone else's schedule.
  9. Fortunately, I have the world's best whoopee cushion, with the ability to create undercover farting noises. Although, I fear the day I'm in public, like in an elevator, and have to try to explain to a stranger where the noise is coming from, or act like it didn't happen.
  10. Unfortunately, I'm subjected to endless window references and jokes, such as "window treatments", "window to my soul", "come to my window", and "If a window of opportunity appears, don't pull down the shade” and even “an opening to Narnia”.
A huge thanks to everyone that has been a helper or supporter throughout everything!  I am so grateful for Gabe, family, friends and medical staff along the way!


Recent Story on Local TV

A local station did a nice update piece on my story this week:


Thankful for so much: Graduation, turning 30 and reaching 9 years of no sign of cancer are all coming up in the next few months amongst other things.




Mandala Fall 2011
It's been a very busy and exciting year...grateful for so many amazing opportunities and the privilege to meet so many inspiring people!

Year in Review...

Various jobs this year:

* Speaking
* Nannying
* Commissioned art


* Passed the 7 year mark of No Evidence of Cancer Anniversary on May 19th, 10 years since my stem cell transplant and 13 years since diagnosis!
* Had a clear brain MRI following numbness and twitching in my face along with neck pain...and a clear chest ultrasound (have to watch for other types of cancer because of the major radiation in that area!)
* No other major new complaints...just the usual pain, fatigue and occasional numbness, etc. but status quo.


* Am officially halfway through my Masters in Counseling and Art Therapy program...woohoo!
* Practicums:  Head Start in the spring, a treatment facility for people with eating disorders this summer and spring (fantastic supervision and experience)!

Some of the Speaking, Teaching, Volunteer and Other Opportunities:

* Awarded the Distinguished Alumni Award from my grade school :)
* Spoke twice at my old grade school to the students
* Spoke on Long Island, NY to a couple of high schools and a grade school
* Spoke at a local junior high/high school
* Spoke in Washington, D.C. at the American Art Therapy Association Annual Conference (amazing experience!)
* Spoke in Indianapolis for an event for the Matthew Debono Scholarship Fund
* Spoke in Madrid, Spain during the World Youth Day activities
* Spoke at an American Public Works Association event
* Spoke with Mitch Albom (author of Tuesdays with Morrie, etc.) at a Young Presidents' Organization event (Awesome!)
* Taught an art class to children at the hospital where I was treated
* Various work with the American Pain Foundation as a PCAC member (did not renew my position after my 3-year term was up this fall)

There was a new nephew/Godson in the family and my brother got engaged and officially became a pharmacist (congrats!!).  I was fortunate to get a new car (after driving the other one for 11 years!).  A couple cousins and a couple friends got married...good times!  The company that my husband co-founded, Lockerdome, is doing really well and I'm so proud of him and his hard work!

Trips: Columbia, MO; Long Island, NY; Washington, D. C.; Indianapolis, IN; Paris, Bordeaux, Perigueux, Lourdes, France; Zaragoza, Madrid, El Escorial, Toledo, Santiago de Compostela, Spain; Fatima, Lisbon, Portugal

Thankful for: the love and support of friends, family and God and endless blessings.

Looking forward to all the exciting things that are brewing for 2012...
Upcoming Speaking/Events for 2012:
-January 4th: Chaminade-Madonna College Preparatory-Hollywood, FL
-January 4th: Nativity Catholic Church- Hollywood, FL
-January 27th: Jefferson Elementary School
-January 30th: Holy Spirit Church- 250 8th graders from 12 schools
-February 10th: Leading art therapy workshop at Cancer Support Community


13 years ago today...

After emergency surgery with Carrie
I was told that there was an egg-sized tumor wrapped around T3 and T4 of my spinal cord.  It was causing numbness in my legs and chest and shutting my body and breathing down by the hour.  I was told I would go through various tests and have emergency surgery to remove as much of it as I could.  They hoped that I would regain feeling in my extremities and not be permanently paralyzed or worse-die.  My surgeon was kind enough to tell me (in his South African accent) that he was going to "talk to my like an adult" and told my 15 year old self what the outcomes could be.  While it was hard to hear, I appreciated his honesty.  That night we also met my amazing oncologist, who I cannot thank enough for everything he has done to help save my life.

It's always hard to believe how much time has passed and how much has happened in my life-for good and for bad.    That day I accepted the personal motto, "I will just do what I have to in order to get better".  I was so naive-who knew what was to come...I also somewhere along that path adopted optimism and hope.  I'm not sure where it came from exactly, but I do know that God, amazing doctors, family and friends helped a lot in my journey.

Today, I am thankful for so much it's hard to describe it all...keep taking it one day at a time!  Thank you to God, my doctors and medical team, family, friends, etc.



Trees of Hope

Trees of Hope- donated to Scrabble at the Sheldon to benefit Our Lady of Perpetual Help

"...I got to witness a miracle.  How many people can say that to St. Peter when they reach the pearly gates?  Huh?  You're a complete flatline.  Nothing and then..."  

"You must think about why..."  

"Why what?"
"Why you?  Why did you get a second chance.  God just doesn't show off-there's got to be a reason.  God gave you a second chance.  Don't squander this gift you've been given...[The scars] saved your life...they're beautiful."

-Charlie St. Cloud (30 min. mark and 57 min. mark)

I found this quote floating around in some papers when I was cleaning the other day...I am gearing up for my speech with Mitch Albom on Thursday and Thanksgiving/fall break from school.  Can't wait! 

Today, I am thankful for: family, friends, each day, good and not so fun experiences, miracles and God.



West Newsmagazine Article

Mom and I enjoying dinner in Madrid
Since I did not get a chance to write about my trip, I wanted to share this great cover story that does a nice job explaining about the trip:

West Newsmagazine article  (click on the cover page and then go to pg. 44-45)

I jumped into school just hours from returning from Europe and have been going ever since with classes, practicum and lots of activities...

Next up on speaking:  Opening for Mitch Albom (author of Tuesdays with Morrie) in November!  Can't wait!

Today, I am grateful for life experiences, blessings, learning and challenges, and most of all: family, friends and God.



Hello, August and Traveling!

LinkAs my mother says, 'You give back, you don’t give up.' You can always choose to help others. If you do, it will change you. —Susan Ford
As always, time is flying by, and where did the summer go? This summer has been AMAZING and is definitely not even close to being over.

  • PRACTICUM: with eating disorders has been fascinating. The community of patients and professionals has been very welcoming and supportive. I'm learning a lot and look forward to continuing there through December.
  • MEDICAL ART THERAPY CLASS: It was great to learn new things about the type of art therapy I am most aware of and help explain things to other classmates.
  • AMERICAN ART THERAPY ASSOCIATION: The national annual conference was in Washington, D.C. I was honored to speak at a morning plenary session about my experiences with art therapy as a patient and now as a graduate student. It was wonderful to meet many other art therapists, including a few famous names. There was a lot of great inspiration! I also had a nice time visiting with my aunt, an artist, who lives there.
  • BROTHER: He graduated with his Doctorate in Pharmacy and has passed all the tests! So proud of him!
  • BAPTISM & WEDDINGS: Our adorable Godson, Isaac, was baptized. We have had a friend wedding and a cousin wedding, with a couple more to go this year! Definitely fun to celebrate!
  • FRIENDS: Lots of fun dinners, lunches, etc. and catching up!
  • INDIANAPOLIS: Tomorrow I am speaking in Indianapolis and look forward to meeting people from the Matthew Debono Scholarship Fund (who helped pay for my summer classes and practicum).
  • FRANCE, SPAIN and PORTUGAL: I will be going on my pilgrimage soon. I can't wait and hope to share upon return!

More excitement on the horizon and it'll be fun to share as it happens...

Today, I am grateful for: life, opportunities, the generosity of others, health, family, friends and God.



Ha, it's been Awhile!

Not sure who is reading this much these days but I had a really great experience tonight...I went to the book signing/reading for Two Kisses for Maddy: A Memoir of Love and Loss by Matt Logelin. It's the middle of finals week and I'm pretty tired and worn out. I finished one exam (and have another in the morning) and rushed back to St. Louis and got to the reading at the exact time that Matt got up to speak. Matt's wife died suddenly when their daughter, Maddy, was born. I have read his blog for years and it was great to meet him and hear him speak. It put things in perspective...people going through their challenges in life-some much bigger than others. I look forward to reading the book!

Since I last wrote, I have done a lot of reading for school, a lot of projects, papers and presentations...a lot of babysitting...I have also done a fair amount of speeches including a couple in NY. I finished my practicum at Head Start on Monday and will start one with eating disorders this summer. I will be speaking in DC and Indianapolis and travel to Europe this summer...can't wait!

Lots to be grateful for,


Speaking 2011

Upcoming Speaking/Events for 2011:
-Jan. 30: 10:30 am Mass-Our Lady of the Pillar- Distinguished Alumni Award
-Feb. 9: 8 am- Our Lady of the Pillar- upper grades
-Feb. 9: 8:45 am- Our Lady of the Pillar- lower grades
-Feb. 24: 7 pm-Our Lady of the Pillar- Speech in the church and Questions afterwards-Open to Public
-March 10: 8:20 am-Chaminade High School, Long Island, NY
-March 10: 7:30 pm- Kellenberg Memorial High School Auditorium, Long Island, NY
-March 11: Morning presensentation to students of Kellenberg Memorial High School, Long Island, NY
-March 11: Afternoon presentation to students of St. Martin de Porres Marianist School, Long Island, NY
-May 6: Chaminade High School, St. Louis, MO following all-school mass
-July 6-10: American Art Therapy Association-Washington, DC
-August 25: American Public Works Association Luncheon

Today I am grateful for so much!



There Goes 2010...

Life Mapping #2, Donation to Scrabble Night fundraiser
for Our Lady of Perpetual Food Pantry (my husband was the chair)

Well, there goes another year! Wow!

Happy New Year!
My 2010 in review...

Various jobs this year:

* The usual inspirational speaking
* Babysitting here and there
* Worked at an upscale children's clothing boutique from January-August


* Passed the 6 year No Evidence of Cancer Anniversary on May 19th!
* Got my port removed after having it for 8 years!
* No other major new complaints...just the usual pain and fatigue, etc. but it's manageable!


*Graduated with my BA in Studio Art, Art Therapy and Minor in Psychology (only 8 years in the making...)...learned about printmaking, welding, papermaking, etc.
*Participated in the BA Final Show as part of graduation
*Was accepted and started grad school this fall for Counseling and Art Therapy and have been working with 3-5 year old children from the Head Start program as my first year practicum

Some of the Speaking, Teaching, Volunteer and Other Opportunities:

* Speech at St. John Vianney High School on Blessed Chaminade's Feast Day
* Speech at Vanderbilt-Ingram Cancer Center's 2010 Celebration of Cancer Survivorship
* Documentation and testimonies were taken in St. Louis and sent to the Vatican for the possible canonization of Blessed William Joseph Chaminade in regards to my miraculous cancer recovery
* Designed and helped create a large mural in a tunnel at Cardinal Glennon Children's Hospital
* Taught an art class to children at hospital where I was treated
* Modeled in the Friends of Kids with Cancer fashion show as a survivor
* Various work with the American Pain Foundation as a PCAC member

There were 2 new nieces and 1 nephew and 2 new cousins' daughters born this year!

Trips: Columbia, MO; Nashville, TN; Philadelphia, PA; Princeton/Evansville, IN

Thankful for: the love and support of friends, family and God and endless blessings.

Looking forward to 2011...



8 Years

Monday marked 8 years that it's been since I learned I had weeks to live. I am truly grateful each day. I pinch myself when I think of where I've been and the people and experiences that have happened in my life. I truly feel blessed...

I stumbled upon this video below today and it definitely brought back a lot of memories-especially during the year and a half I lived with that tumor and never knew if it was my last day...I'm thinking of and praying for all the families who are going through these experiences these holidays...

Today, I am so grateful for so much.




“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



Just checking to say that I am feeling grateful each day to be in graduate school for art therapy and counseling...it's been a long road but I'm finally here :).

I also was able to teach a children's art class at the hospital where I was treated to children in the hospital. It was a great group and I even got to see an old friend's family (even though it wasn't for a good reason).

I was asked to donate a couple of art pieces to an art therapy benefit and auction. It was a fabulous event and I was glad to be a part of it!

Another speaking engagement (locally) went well in August and I was just as inspired by the audience I met afterward!

Today, I am grateful for: God, new friends, old friends, family, hope, grad school, amazing people in my life that have helped me and continue to help me...and so much more!




This summer I have been working on designing and drawing an enormous mural with 2 of my close friends.

The theme: under the sea

The walls: very long (215 feet long to be exact), of a formally scary dark tunnel that connects 2 hospitals (SSM Cardinal Glennon Children's Medical Center and St. Louis University Hospital). Some kids go through the tunnel to do radiation and other procedures at SLU. It is also used by many employees and patients of both hospitals.

There was a group of volunteers that came to help us paint it since it was such a big project but we drew and designed everything on the walls beforehand.

Here are some pictures of our finished work:

Today, I am grateful for: life, happiness, good things, grad school starting soon, God, family and friends!



Miracle Story

This week has brought a lot of press concerning my miracle and my prayers to Blessed Chaminade and the Catholic Church.

I am grateful for the kind words from people and hope that this story can help others in some way.

I want to share my favorite story, reported by Maggie Crane from KMOV:


Today, I am grateful for so much it is overwhelming!




It's been a whirlwind of work, friends and family since we returned from our wonderful trip to Nashville. We felt very blessed to have been invited to such a terrific event. We met lots of amazing people and really enjoyed Nashville.

Tomorrow, I am reaching a milestone-for many cancer survivors, that is. Awhile ago I wrote a post about my port. Well, tomorrow is the big day that we will be parting ways. Even though I still go to the doctor every 3 months, I have decided after 7 years together, we are going to break up. You've been a good sport, Port.

Before the craziness of grad school starts, I figured I would have the time to rest after getting it out and can muster up the strength to get stuck in my arm every 3 months...

Pros of getting it out:
-No more plastic device in my body
-It's a step in healing
-I could (if I wanted to) play high impact sports
-Do not have to worry about it getting infected
-Forced rest

-I've had to stop one of my medicines for a few days and it has left me with horrible headaches and soreness...ugh.
-It's surgery with an incision, soreness and possible complications (low chance)
-I will have to get IVs in the arms again
-If I ever need to get a port again, my places to put a new one will be limited (I have had 2 external central lines and I think 3 internal ports over the years).

Today, I am thankful for a wonderful summer, hope, friends, family, and God.



2010 Celebration of Cancer Survivorship

Metamorphosis from the 2008
Lilly Oncology On Canvas™ Exhibit

If you are going to be in or around Nashville next weekend (June 6th), join me at Vanderbilt-Ingram Cancer Center's 2010 Celebration of Cancer Survivorship . I will be keynoting the event and my husband will play a part too! There will also be artwork from the amazing Lilly Oncology On Canvas™ Exhibit.

For more information visit: http://www.vicc.org/2010/celebration/

This should be a spectacular event and I have been looking forward to it since last fall when I found out I would be speaking!

Today, I am grateful for a wonderful summer so far, family, friends, God and amazing opportunities to meet and touch others.



6 Years! Woohoo!

Crazy...it doesn't seem like 5 years was that long ago. Today marks 6 years since the cardiovascular thoracic surgeon cut through 3 major back muscles, stretched and cut ribs and moved other vital organs out of the way. All done to remove Spanky, the small Nerf football-sized tumor, that was nestled between my heart, lung, spine and pulmonary artery! And the biopsy days later showed the tumor had died miraculously with little treatment and my organs survived with manageable side effects.

Still hard to believe it all happened...but I am incredibly thankful to God and my medical team. They continue to get me through every day.



BA Show

As part of my graduation, I was in the Bachelor of Arts-Studio Art show. I wanted to share a few images from the show. I cannot believe graduation is so soon!

Ceramic piece: Facing My Back

This piece addresses the scars on my back that are from the extensive tumor removals and resections. The scars represent all of the healing and trauma that has gone on within my body-emotionally, physically, psychologically and spiritually-since being diagnosed for the first of three times.

Painting Title: Inside Grief
Acrylic on Wood

This piece is representative of the feelings that emerge sometimes about having had cancer three times and all that it entails. Usually, I am very positive but this shows the other side.

Sculpture piece: Tumor
Wire, fabric and LED lights

Hanging sculpture piece: To Mix, To Suspend, To Simplify

Clear Thread, Hot Glue and Fabric

Painting Title: Hope
Acrylic on Canvas

Dragonflies are my personal symbol of hope.

Today, I am grateful for coming this far, family, friends, new opportunities and much more!



Interesting Read

As with most of the years, I enjoyed this year's winning essay from Glamour magazine's essay contest: I Chose to Live by Maia Morgan.

Check it out here.

My favorite quote was at the very end. It resonated with me:

But here's the thing: I don't think you move on, really, from the past. You do, but you don't. You carry it with you. You make it as light as you can. As light as feathers.

Today, I am grateful for so much. Life is good!



Graduate School

I had interviews this past weekend for graduate school...one day of group interviews and the next day was a 15 minute interview with the faculty and me. I thought it went well and was fun too.

I just found out I was one of the lucky 10 accepted into the Graduate Art Therapy Counseling Program for this fall!

I couldn't be more excited as this is one of my life's goals-to become an art therapist!

Today, I am grateful for this exciting news, the family, friend, God and experiences that have brought me to this point in my life!



James "Rhio" O'Connor Memorial Scholarship Essay Contest

Essay for the James "Rhio" O'Connor Memorial Scholarship Essay Contest

Rhio O’Connor’s story inspires me from different aspects. First, he inspires me because the only person I knew growing up that had cancer was my paternal grandfather. Not only did he have cancer but he had the same type that O’Connor did- mesothelioma. Mesothelioma (cancer of the mesothelium) is a disease in which cells of the mesothelium become abnormal and divide without control or order. They can invade and damage nearby tissues and organs. Cancer cells can also metastasize (spread) from their original site to other parts of the body. Most cases of mesothelioma begin in the pleura or peritoneum. My grandfather’s case was caused by his lifetime of extensive work as a sheet metal worker around asbestos before they knew the dangerous effects of this substance. He was a fairly healthy man who was crippled by this cancer and died within a year of diagnosis at the age of 67. I was close to my grandfather and was even there when he passed away on Thanksgiving.

To my surprise, several years later at the age of 15, I was diagnosed with a very rare type of cancer- Askin’s Tumor. My cancer was also in my chest but my initial tumor pressed on the top of my spinal cord. After a couple of months and back pain, it eventually led to the beginning of my body shutting down before I had emergency surgery.

Then, chemotherapy began immediately. Being an artist, my bald head became a challenging canvas-if people were going to stare I might as well give them something to see! After a year, I was gladly done. I struggled with feeling older and that continues to be challenging, but I have learned to make it a positive.

In December 2000, cancer was discovered in my bone marrow. It was discouraging but I was not giving up. For the next 5 months, I was in the hospital. Randi, a fellow patient, was fading quickly from a courageous fight with cancer. In her last hours, she looked at me and told me, “Rachel, I will keep fighting in heaven and you must promise me that you will never stop fighting here.” I have never broken my promise.

I missed the second half of my senior year but graduated with my class. Then, for my bone marrow transplant, I had a very intense regimen of chemotherapy in order to kill my entire immune system and brought me close to death. A few days later frozen cells were put into my body to grow a healthy immune system. They discovered I had 2 extremely serious infections but once again surpassed all odds and pulled through. I learned to walk and eat again, enjoying each day and started doing more charity work.

Fall came and I started college for the first time. Once again my body was screaming that something was wrong. We learned a new tumor was growing between my heart, lung, and spine. We had exhausted our medical options and I had weeks to live but I believed there is always hope.

This was when my love for art, poetry and helping others really took off. Doing creative things became my way of leaving myself behind. My goal was to continually have something to look forward to. I despised the thought that if I died, I would become another statistic. Three months passed and I seemed alright and got on with my life!

In the fall, a whole year having passed, I was still alive. My doctors had scoured the globe for options. All the experts believed that I definitely would not be cured ever.

By May 2004, a surgeon came to my hospital and wanted to take the tumor out. Surgery went smoothly and he removed the tumor that was size of a small Nerf football.

The biopsy results showed the tumor had completely died inside me. In medical terms, it is a completely unexplainable. It has been 5.5 years since that surgery and I am the only known case to survive a relapse of Askin’s Tumor following a bone marrow transplant. I find great joy in seeing the positive sides of everything I have been through.

My efforts took me all the way to Denmark to help give global awareness and raise money towards sarcoma cancer. Another positive example out of many is my trip to Washington D.C. where I talked to Congressmen about cancer funding. I am now the only nominated young adult member of the American Pain Foundation’s Pain Community Advisory Council.

I try to balance the advocacy work with other things like college. I have accepted that cancer will never leave me. It is embedded in me-physically, mentally, emotionally and spiritually. It makes me so grateful to be in such an amazing country with so many opportunities.

O’Connor’s story reminded me of the will to never give up on hope and how I felt that when I was facing horrible odds and then eventually a 0% chance of survival. With the help of my doctors, family and friends and God, we never gave up and tried every possible angle we could to try to extend my life expectancy. It was also important to do something each day that was enjoyable-no matter how small-because none of us really knows how long we have on this Earth.
Cancer is the best and worst thing that has ever happened to me. Because of it, I am driven to become an art therapist and continue helping others through my speaking, writing, art and volunteering. As Albert Einstein once said, “There are 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” I choose the latter. Miracles have allowed me to live and I am forever grateful.