The End of the Battle, A Clean Bill of Health & 17 Years Cancer Free: Part 2 by guest blogger, Amy

I’ll try not to make everyone cry with this entry.  This is a success story and I’m happy to share it with you. Linda asked me to write my blog entry in two parts, so here is part 2.  :)

While writing part 1, I told myself I wasn’t going to pull out Zach’s binder, but tonight I did.  17 years ago when Zach was diagnosed, they didn’t have EMR’s  (Electronic Medical Records).   We were handed a three ring binder, and you filled it up over the course of treatment.  The first thing I looked at were his protocol sheets.  They listed out each day of each chemo cycle and listed what drug was given on each day.  The header of the page read “CCG-1882 Poor Prognosis A.L.L.”   “Poor Prognosis” were two words I had crossed out on every page.  That was just too hard to look at every day. This binder is where I kept all the info on the meds he was given, every single blood count record, and meticulous notes along the way.  I’m sure I missed a few things, but tonight I counted 81 entries on blood counts alone!  Zach’s last treatment day was November 16, 1999. 

We were SO looking forward to a fresh start with the new millennium!

It’s the weirdest feeling when your child completes treatment.  During treatment your child and your family have the continuous support of the care team.  You rely on the drugs to beat the cancer.  Then as quickly as it started, it’s done.  The care team essentially says, “Bye, have a nice life!”, and off you go.  You’ve developed a “new normal” with the treatment process that you have grown accustomed to.  Now you have to create another “new normal.”

It’s a whirlwind of emotions.  You’re so incredibly thankful to be where you are, yet you’re scared.  Previously the drugs kept the cancer away, now his little body has to do all the work.  Will it work?  I’ve recently learned that studies are showing that often times parents of childhood cancer patients experience PTSD  (Post Traumatic Stress Disorder).  Oh yeah.  It took several years to get to the point where every cough or sniffle from one of the kids was not a cancer concern in our eyes.  I KNOW I was overprotective.  Find me a cancer mom who had the rug pulled out from under her with her child’s cancer diagnosis who ISN’T overprotective.  Don’t mess with Mama Bear…   :)  

I remember wishing there was someone I could talk to who had walked this same path.  There were some family volunteers at the hospital, and they were great, but if their child didn’t have the same type of cancer as yours, it was difficult to relate.  I recently met two women who have started their own nonprofit organization intended to provide that “mom support” that’s needed throughout the whole crazy cancer process.  They named the organization Momcology -- so cool, right?  Check it out, you can follow them on Facebook, or check out their website, www.momcology.org.  You can join/follow and choose to join based on geography and/or diagnosis.  Boy, do I wish this was in place when we were there.  For those of you reading this who may know someone who is a pediatric cancer parent, please tell them to check this out.  

Zach, my rock star, completed treatment and went on with his business like any other 8 almost 9 year old.  Except, he was falling behind in school.  Reading was difficult.  His processing speed was much slower than it used to be.  Math was a challenge.  Social cues were missed. 

Latent effects -- now we had to learn about this.  You see, when Zach was diagnosed, medical teams were thrilled to tell you the long term survival rate for ALL (acute lymphoblastic leukemia) was 80%.  They didn’t know, the latent effects of the treatment. 

Zach developed severe learning disabilities.  Thankfully, we had AWESOME teachers and case workers who watched out for great opportunities for him.  We were so grateful for our dedicated team, and we let them know it.  A little gratitude goes a long way.

Zach worked hard in school.  He was determined to fit in socially -  you know the whole stigma about being the “special ed kid.”   To this day, Zach has two really great friends, who have stood by him through it all.  J & J  (you know who you are), we all are so thankful for you!

Zach was on an IEP throughout school.  He graduated from high school in 2010.  God kept his promise!  Tom and I couldn’t hold our smiles back when he walked across that stage at graduation!   Next, he attended a program for young adults with disabilities, working to refine his reading and math skills and learning independent living skills.  He also worked with an organization that provides work experiences for adults with disabilities.  This lead to a work experience at a cabinet making facility in a town near us.  This lead to a full time job!  

Last summer, Zach got his driver’s license and is working full time at the cabinet making company.  He is a successful, productive, happy person.  Every parent’s dream!

The three Stooges - Zach, Cory & Hannah

Just last week we recognized his 17 year cancer free anniversary.  We had a tradition of going out dinner every year to celebrate the day.  Last year Zach said, “You know, we don’t need to do this any more.”  I guess he was ready to move on…   So, no dinner celebrations, just a quiet feeling of deep gratitude.  God is Good  -  All the Time!

Thank you to Linda for inviting me share my story.  I look forward to day when you can write your blog entries telling of your cancer journey in the past tense.  

Love to you,

Amy

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Thank you, Amy, for taking time to share your joyous ending with us! Your story will be a great inspiration to many, I am sure!! It has also been very helpful to have you as a guest blogger since I've had a horrible chemo week - I've been in bed 5 days now.
I'll keep fighting the fight like we all do!
XOXO ~ Linda ツ

Perseverance & Unwavering Faith ~ Part 1 with guest blogger, Amy

I find that that when people hear I have cancer, more often then not, they too have a personal vendetta with the disease. In Amy's case, it was her oldest son. She was kind enough to reach out to me with support in the beginning of my journey. After hearing the story about her son Zach, I had to have her as a guest blogger! It's a beautiful story of perseverance and unwavering faith.  

Meet my high school buddy and guest blogger, Amy! 

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BIO: Three weeks prior to starting his kindergarten year, Zachary was diagnosed with Acute Lymphblastic Leukemia (ALL).  His treatment protocol included  10 days of cranial radiation, and 3 YEARS of chemotherapy.  Zach is now 22 years old and a 17 year cancer survivor!  Here’s his story, told by his mom, Amy. 

Amy and her husband, Tom

Part 1

August 19, 1996 was the day that changed our lives forever.  This was the day my husband, Tom, started a new job, and we all were so excited.  You see, this job was the one that made it possible for me to quit my job to stay home with our three young children, Zachary (5), Cody (2 ½) and Hannah (10 months).   The plan was for him to spend his first week in Boston training and meeting customers (we live in a Minneapolis suburb).  

Zach, Cody and Hannah three months prior to Zach's cancer diagnosis (May 1996)

August 19, 1996 was also the day I had scheduled to take Zachary in to see the doctor.  Something wasn’t right and I wanted him seen.  He was incredibly tired and cranky.  He also looked very pale standing next to Cody, his summer suntanned little brother.  Plus, he had these pesky little bruises on his legs that I couldn’t figure out ( I later learned these are called petechiae - a result of a low platelet count).

4:00 appointment.  4:30 blood draw.  5:00 cancer diagnosis, and by 6:00 we were already a “Childrens’ Family”, meaning we were admitted to Minneapolis Children’s Hospital.  Tom was paged at a Red Sox game at Fenway Park to receive the phone call from his brother that Zach had leukemia and we were on our way to the hospital.

That first night in the hospital was a nightmare.  First, I had to keep a brave face for Zach and be calm and reassuring, while he was getting poked and prodded and not understanding why.  I’ll never forget having to lay on top of him to help hold him down while he had an iv placed in his arm.  “No Mom No!”  I’ll never forget those words...

Next, I wasn’t sure if we had medical coverage or not.  Tom was on his first day of a new job and wasn’t eligible for medical insurance for 90 days.  I wasn’t aware of it at the time, but God had us in His hands the whole time, making sure the COBRA paperwork I had requested was delivered to our house via certified letter at 2 pm that day.  Because I had requested it and signed for it prior to Zach’s diagnosis, we WERE eligible for coverage.  

Lastly, it was a long, lonely night sitting in the hospital watching my beautiful boy sleep all the while knowing that Tom was alone in his hotel room in Boston, dealing with his grief alone because he was not able to catch a flight home until the morning.  

Zach spent ten days in the hospital, getting his port installed and starting his chemotherapy regime.  The plan was for one year of intense chemotherapy, 10 days of cranial radiation, and then 2 ½ years of maintenance chemo.  Barring any major holdups, he would be done with treatment in December 1999.  

Zach Christmas 1996

I remember wondering how were we ever going to get through three years of this?  Seriously? Will he survive this?  Will we all survive this? I have three small kids and a husband who works a million hours a week, how am I going to do this on my own?  Will our lives ever be normal again?  It was the most desperate feeling I’ve ever experienced.  

A moment I’ll never forget during those first ten days in the hospital…  I was driving from our home down to Children’s Hospital in my little white minivan - aka the mommobile.  Tom and I took turns staying overnight with Zach.  One of us would stay with him and the other one would go home to be with Cody and Hannah.  My time driving back and forth from the hospital was when I would cry.  It was the only time I was alone.  At the hospital, I had to have a brave face on for Zach, and at home, others were always there watching Cody and Hannah.  I remember exactly where I was on 94, heading east, just before the first tunnel.  The range of emotions a person can feel in a matter of seconds is amazing.  I remember first being incredibly angry at a man who passed me in a fancy little red BMW, thinking to myself that he was so self-centered in his sweet little car, when my son was in the hospital with a potentially fatal disease.  How dare he!  I was so angry, I broke down crying, and screaming in the car.  I remember shouting at God, “Oh God, help me, help us!  Will he be okay?  Will he survive this?  Will I see him grown up?”  I sobbed, you know those big sobs when your shoulders even shake.  Suddenly, I experienced this warmth throughout my body, and a calm came over me.  As clear as day, I heard a deep voice say, “He will be alright, he’ll get through this.  You’ll see him graduate from high school and he’ll grow up to be somebody very special.”  The voice was so clear, I turned around in my van to see if someone was sitting in the back seat.   I knew deep in my heart we’d all be ok.  God spoke to me, and I was awestruck.  This turned out to be the first of several times this happened throughout the course of Zach’s treatment.  We felt God’s arms wrapped around us and it kept us all going.  I hung onto Matthew 6: 25-34.  Take a minute and read it when you can.  I knew that God took care of the birds of the air and the flowers of the field, he would surely take care of us. And He did.  God is good -- all the time.

Zach plugged away through treatment.  He gained 13 pounds in two weeks while on prednisone.  This weight fell off quickly during the next phase - too quickly and by Christmas time he looked like Gandhi.  He endured 10 days of cranial radiation.  Such a scary experience for a five year old to have a plastic mesh mask put over his head, and then the mask bolted to the table so he didn’t move at all during radiation.  He was a champ and never complained.  He dealt with needle pokes, numerous lumbar punctures, low blood counts, nausea, hospitalizations, a dandy case of shingles, and a major seizure - a lovely side effect of chemo.  

We were led and supported through this ordeal by the FABULOUS docs and nurses of the Hematology/Oncology Clinic at Mpls Children’s Hospital.  We’re so thankful we had this team taking care of our Zach. They were truly part of our inner circle, providing wonderful care and support. 

I remember throughout the course of his treatment, friends and family would comment that I was so strong, or would ask me how I stayed strong.  This comment always caught me off guard, and in fact it used to kind of irritate me.  Did I have a choice?  Well, I guess I did.  I could step up and handle this, or wither up and die.   My son was 100% depending on me to get him through this and I was not going to let him down!  So, thanks for the kind words, but everyone who is a parent would do EXACTLY the same thing I did, and that’s whatever it takes to get your kid through to another day.

I could go on writing and explaining every detail of his treatment, but wow, it’s so emotional going through this all again.  In one breath it seems like a lifetime ago, and in another it seems like only yesterday.   I’m so thankful to be where we are today, and to have my beautiful, generous, kind hearted,  22 year old Zachary!

Zach's grad photo (2010)

Below are the lyrics to a song by Mark Schultz.  It brings tears to my eyes every time I hear it.  It takes me right back to those first days in the hospital with Zach.  Mark explains it better than I can.  Give it a listen, click on the video or link below. 

He's My Son ~ song by Mark Shultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
CHORUS
Can You hear me?
Can You see him?
Please don't leave him
He's my son

Where is the Sand Man When You Need Him?!?

Here I am, again, in this vicious circle … off to bed at 8pm and wide awake by 10:30pm. I use to make it a good five hours. The last two nights it's been two hours max! Not cool.

With chemo it's hard to track down the 'source' of ailments. I stopped drinking caffeine laterafternoon, but my God, how much caffeine can be in green tea? The post chemo meds last week were changed up so I'm not taking as many steroids, but perhaps there is a lingering effect? I've had energy for the past two days and organized a couple closets in the house… one would think that would wear me out and it did, but not enough to sleep a whole night. Nope. I have no clue what the culprit is. So here I sit. 

The frustrating thing about chemo is not knowing how you'll react on any given day or week. Last round was frightful! I spent most the two weeks in the bathroom. Knowing I didn't want to endure that again, I changed up my diet for this cycle and omitted any salads, fruits, veggies and coffee. Surprisingly that did the trick (so far)! I hate it though because those are some of my summer eating favorites! 

I also hate what the steroids do to my body. Suffice to say I'm pushing a good 20 pounds heavier without eating more than I have pre-chemo. I usually have one filling meal a day then snack on small stuff like yogurt, granola bars or crackers the rest of the day. But given my lack of activity, I'm certainly not burning up calories. It's mostly frustrating as I do NOT want to buy clothes that are bigger when I plan to work at shrinking and losing those LB's once chemo is over. 

The good thing is I do believe the fluids I received last week when I was dehydrated have helped me have a good week this week. Last week when I went in to have my portable pump removed, the nurse could tell I was in bad shape. She took my BP and it was 80/50. Then she took my pulse which was over 100. A combo that apparently dictates one is dehydrated. And yes, another lovely chemo side effect is dehydration. I can drink a gallon of water a day, but my body absorbs water differently while I'm on chemo. My body pretty much does every thing different while I'm on chemo! So although I'm drinking a lot, it's not necessarily doing what it should, so the boost of a couple liters of fluids pumped directly into my blood stream has done WONDERS! My unsolicited advice to my cheomoites is - get fluids when you're run down or feeling like you're on the verge of dehydration. It should do wonders for you too! 

Thanks for following! This little blogger is off to attempt shut-eye AGAIN! Wish me luck! xo

Living and loving life ~ Meet Guest Blogger, Cory!

Cory's Bio: Just a 44 year old guy living life and enjoying it.

Hi, it's me, Linda. I want to introduce you to Cory. His bio truly sums up his ability to tell death to fuck off and keep living and enjoying life. It's a truly amazing story and I'm privileged that Cory is sharing it with us on my blog! 
Thanks Cory! You ROCK! 

F*ck Off Death, This Guy is Living and Loving Life to the Fullest! ROCK ON, Cory!

A blog…me? Wow…who would have thought. Linda was looking for someone to help her on her blog for those Chemo days that you just don’t feel like doing anything. I thought I would give it a go and see if people wanted to hear what I had to say. I have a different view on cancer and such and some people enjoy drawing motivation and strength from me and others just like to laugh with me (or at me). Either way I am fine with it.

So, the first blog entry is kinda rough, so I figured I would fill you on my journey as people like to call it.  I prefer to call it what it is … suck factor. So I am a former military guy. I did a lot of years in the military. Got out, got married and had a good life. Soon had two kids (both boys), owned a successful company and then on September 2011, I got the news. Stage IV Colorectal cancer with mets to the liver. I was 42, my oldest was 6 and my youngest was 4. You know, as I sit here, I really thing the numbers 9 -11 are bad for me. I was Diagnosed with cancer, the Attack on 9/11 occurred and I married my first wife on September 11. Nothing good happens on days with those numbers. Anyway, we were living in Germany, my wife is on active duty. My Oncologist there was less than understanding and said to enjoy Thanksgiving and Xmas that year because it would probably be my last. WOW, that was a kick in the pants ( I am trying to keep this clean for everyone). I went home and had my pity party went on for a while, probably like 15 minutes. Then, I decided that she was a quack and didn’t know me so her opinion meant nothing to me. I was medevac’d out of country within a week and sent to San Antonio for treatment. My wife and kids had to stay behind until they could arrange for them to move permanently to the US. Took about 6 weeks. THAT is a lifetime to go without your family during a very stressful period in your life. Fortunately my sister in law and her two daughters were stationed in San Antonio so I stayed with them. During those six weeks, I started chemo and looked for a house at the same time. I had a very good realtor who understood everything and agreed to go on my schedule. So I looked around online, drove various neighborhoods and finally settled on 15 houses. So my realtor and I spent one day going and doing walk throughs. Found my house and closed within 30 days. Total time…40 days… had to wait for the wife to get her to approve, no way am I buying our first house without her saying yes. 

Stopped chemo in Jan 2012 to get ready for surgery. Did a Disney Cruise and 5 days at Disney right after the cruise. I love Disney, but that was A LOT of Disney. Got back from our trip and had my APR surgery. Now a lot of people get stressed and depressed over the changes in your body. For me, it is great. I NEVER have to sit on a public toilet again. Save a money on toilet paper… it is all how you look at it. Recovered fairly well from the surgery except for the minor thing of they left a sponge in me and had to go back in 2 days later and get it. How do you leave a sponge in … I mean there is nurse called the SPONGE NURSE, their job is to keep track of the sponges. Really? I am a medical type and so is my wife, so I understand stuff happens, but come on…I don’t have enough to deal with? Anyway, recovered and started a quick round of chemo - 4 doses, stopped in June 2012 and had liver ablation surgery for the 3 tumors in July 2012. THEN NO CHEMO UNTIL Jan 2013. Unfortunately, the ablation didn’t work and the 3 tumors are still there. BUT, in Sept 2012, I was able to write to my oncologist in Germany and tell her, well - I am trying to keep this clean - go away and go back to med school. I am not dead. I feel great. Still am damn handsome (at least my wife says so, but I think she is lying) and had no plans on leaving anytime soon. My philosophy on my cancer and what is going to happen is the same as the military taught me in the various selection courses I attended. You aren’t done until someone taps you on the shoulder and says, “You’re done, get on the truck”. Until then you keep moving forward and putting one foot in front of the other. Cancer happens. It happens to some incredible people and to me, but it doesn’t define you. It just happens, you didn’t do anything to get it most of the time, though if you are reading this and you smoke. Really? Are you stupid? QUIT NOW. Cancer is just a disease process - it is bad, but so was HIV in the 80’s and early 90’s…how many people die from it now? Numbers have dropped significantly. 
So where do I go from here? I am in the process of getting ready for a liver resection at MD Anderson. I am excited by it. Even though I am medical, I have learned so much about the liver I didn’t know it is an amazing organ. Anyway, should have my surgery in a few weeks and after that, well, let’s see how surgery goes and we can go from there. 

My closing to you all, fight the good fight! Don’t quit. Don’t let your obit read “he/she slipped quietly into the night.” Let it read like mine will “He went kicking and screaming. Death definitely had to work to take him and will have to take a few weeks to recover from the fight”. Believe the positive stuff your medical care team says, but remember, anything negative they tell you is an opinion. They don’t know anything for sure. The cure for cancer is not “right around the corner” and I don’t believe the will find it in my lifetime, but you have two choices when you are diagnosed. LIVE OR DIE … and I personally don’t like that second option. 

Meet Guest Blogger, Ray!

Ray

Ray is a 53.  Married for 30 years with 2 adult children.  Ray had his first colonoscopy soon after turning 51.   That changed the world.  A suspected cancerous area was discovered in his colon, confirmed by lab a few days later.  That started the whirlwind of getting a surgeon, scheduling surgery, dealing with a medical leave from work as well as the emotional turmoil.  He had a laparoscopic  colon resection in April 2011 with a staging of IIIC.  At the time it appeared that it had not spread, confirmed by CT scans.   This was followed by 12 treatments of FOLFOX. Ten months later, with his CEA rising, a PET/CT scan revealed a reoccurrence at the original surgical site as well as other areas in his abdomen.  In April 2012 Ray has HIPEC surgery, 12 hours in the OR followed by a 12 day hospital stay.  A number of semi-important internal organs were removed and has a permanent colostomy as a result of this surgery.  This was followed by 30 treatments of radiation and Xeloda pills.  Through this time his CEA was rising again and started FOLFIRI+Avastin in October 2012.  Today Ray continues to receive chemotherapy, Xeloda + Zaltrap.

Aside from recovery time from surgery Ray has continued to work full time as a Project Engineer in the medical instrumentation field.  He also works out regularly and enjoys life.

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Thanks Ray for the great blog post below. It is a great reminder in this hurried world we live in. I appreciate your contribution and I know the readers will as well! ~ Linda

One Day at a Time ~ by Guest Blogger, Ray

In the years prior to my cancer diagnosis, I was active in running and cycling.  (I still am, but it has taken a back seat due to down time from 2 surgeries and not always having the spare horsepower to work out). After running for a few years I decided I wanted to try a marathon.  I was woefully undertrained but thought, “I paid my $90”; I'm going to run it. It was tough event.  I ran 16 miles and walked the remaining 10 to complete in just over 6 hours.  Through that experience I learned that to endure, you just have to make it to the next snack stop, the next mile marker, or make it up the next hill.  You can't focus on the entire race, just the next little milestone.  When I received my cancer diagnosis (during my first routine colonoscopy) I was faced with the daunting blackness of the unknown.  I didn't know it at the time but it has turned out to be a marathon.

My take on navigating the ups and downs of a cancer diagnosis and treatment is that I really don't feel I have a choice but to just deal with each challenge as they appear.  I still have a life to live, a family to enjoy and financial obligations to meet.  Time for another chemo session, time for some not so great blood marker results…I struggle through it and move on…one day at a time.

This past weekend as I was leaving a party, a friend of mine called me an inspiration.  He'd been struggling with the death of his sister; she attempted suicide and while not initially successful, she succumbed a few weeks later due to complications post resuscitation.  After his remark to me I just sort of smiled, said my farewells and thought to myself…one day at a time.

Believe me, there are times where I fall into that dark place, where i am just tired, frustrated, amd sick of it all!  I had an especially difficult time dealing with a continued cancer presence after a grueling 12 hour surgery called HIPEC, my second surgery a little over a year after my initial diagnosis.  It took several months to really get back to a normal, even keel.  At some point I recognized that I can't go through this scraping the bottom; I had to just deal with things...move forward...one day at a time.

Meet Guest Blogger Belle! Fighting Stage 4 Since 2011 & Still SO FULL of Life!

BELLE & HER HUBBY 

About me.  I’m a stay at home living the dream in southwest Washington State.  That is I was, living the dream that is, until I heard those dreaded words in the recovery room “we found a mass, and we’re pretty sure it’s cancer”.  That was in the fall of 2007, and I’m still fighting the fight.  When cancer isn’t pissing in my Cheerios, I try to do whatever I can to experience life, help others and enjoy life with my husband, two kids and friends.  Add to that a lazy house cat, a 5 month old standard “parti” poodle and a 16 year old Border Collie and cancer aside, my life is good.

I was diagnosed as stage 3c rectal cancer.  After 9 months of treatment I was declared cancer free.  Almost 3 years post diagnoses though, my routine PET scan lit up and a recurrence in my lungs was confirmed.  I’ve been on the “chemo for life” program since February of 2011.  It sucks and I hate it, but you do what you have to do.

Some of the things that bring me the most joy – with friends and family topping the list, are wine tastings, cooking, canning (yes, the old fashioned kind), organic gardening and travel.  I am passionate about spreading the word about colorectal cancer in whatever ways I can and my writing is one way of doing this.  I’ve been to D.C. several times in the past couple of years to talk to our State Senators and Representatives offices about the importance of funding for cancer research, screening and awareness programs and hope to have the opportunity to do more in that regard.

I’ll be turning 50 this year.  Time for the average Joe’s and Jane’s to get their first colonoscopy.  I’ll be happy to just turn 50.  Living with cancer isn’t what any of us wanted, but some find that is our path.  I’m much more than a person with cancer.  I’m a mother, I’m a friend, I’m an advocate.  I love experiencing new things, meeting new people and living life to the fullest extent possible.  I’ve always lived this way and although cancer may have altered my path, it hasn’t put me in the ground just yet.  Until it does, I’m going to do as much living as I possibly can.

** keep reading below for Belle's blog posting **

CURE is a Four Letter Word ~ by guest blogger Belle

Welcome Belle! Thank you for being a guest blogger, this is very helpful during chemo weeks when I want to keep feeding my lovely readers postings but my hands refuse to work and my fingers are curled up and numb from chemo treatments. 

Readers, I think you'll really enjoy Belle's musings cancer and come away with  brave insight into her fight, in addition to a shedding a few tears. 

Mahalo Belle ~ F*ck Cancer and keep fighting the good fight!! xo

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I always know that my scan is bad when my oncologist comes into the exam room, grabs his chair, and gets right down to business.  If the scan was good he’d come into the room, shake my hand and instead of talking about the scan, he’d ask me how I’m doing and talk to me like an old friend rather than a cancer patient getting their scan results.  Eventually he gets to the scan, which I’ve usually forgotten about by then, knowing the news is good.

My last scan was not good.  A new spot on my lung plus two lymph nodes in my chest that hadn’t lit up in over two years were glowing again.  Not good.  I’m finally having to confront my reality, which is that “cure” is pretty much off the table and “more time” is my best hope.  It’s a lot to get my head around.  My husband wants to know “how long” but I won’t let him ask the oncologist this question.  It’s just too morbid – I won’t go there.

So once again, it’s time to regroup, pull out my toolbox and take inventory.  I need all the tools I can to deal with this latest development.  Friends tell me “if you want to talk, just let me know, I’m here for you”.  And as much as I appreciate this, there just doesn’t seem to be a lot to talk about.  I can tell by the way a person says these words whether they’re really prepared to hear what I have to say or if they just say it because they don’t know what else to say.  And really, what is there to say?  “Wow – it sucks to be you….” – that about sums it up.  My Colon Club friends rally behind me, as they have always done.  They are my safety net, my security blanket.  When times are darkest, I know they will always shine a light for me.

When Gaelen was near the end of her life, I noticed a marked increase in her anger and frustration levels.  I was surprised to feel both of these feelings rage inside me these past weeks.  I’m not an angry person by nature, but suddenly I felt both anger and frustration – with the disease, with society, with researchers who don’t talk to each other and share information, with doctors who don’t have all the answers.  Anger that it doesn’t matter what you eat, what you juice, what treatments you receive, how positive your attitude or how much you pray – in the end, if cancer decides to take you – you’re outta here! Katie Couric recently stated on her show something to the effect of “the cemeteries are filled with people full of hope and positive attitudes”.  Amen to that.  It doesn’t matter whether you’re young, old, man, woman, husband, wife, mother or father.  Cancer doesn’t care if you’re black or white; Christian, Muslim or Atheist.  Cancer doesn’t care if you’re a good person or a worthless bum. Bottom line – cancer – doesn’t – care.

I get a second and third opinion, both of which offer me nothing more than my current oncologist can offer me.  More chemo.  And no more “chemo lite” as I call it, but the really nasty stuff that makes me sick as a dog.  Since I’m considered terminal now, my oncologist will prescribe medical marijuana if I want to try it for the nausea.  Great, I think, I’ve been dying to try that stuff.   

I remember the advice I’ve given others.  If one day at a time is too much to handle, then take it one hour at a time, or one minute, or one second.  Break things down into smaller pieces that are easier to manage.  Breathe in, breathe out.  I use my anger to fuel my presentations to our State Senators and Representatives in Washington D.C. during Call on Congress.  Suddenly my message seems so clear, so blatantly obvious.  You either catch cancer early and prevent it – or catch it late and spend millions of dollars on a patient just so they can have a few precious years left before the disease takes them down.  

I’m tired and I’m scared.  I’m really, really scared.  They say there are no atheists in foxholes.  When hope is a rare commodity, we tend to find religion. I don’t pray for a miracle or a cure, though I’d take either one if there’s an extra to spare.  What I pray for is strength.  Strength to handle whatever path is before me.   Strength to not let all this completely paralyze me with fear. Strength to continue speaking out about this disease and how easily it can be prevented to anyone who will listen until I have no breath left. Strength to continue living and loving my life, my friends and my family for as long as I possibly can.   ‘Cure’ is indeed a four letter word and so is ‘fear’.  But so are ‘hope’ and ‘love’.  I’ll try hard to focus my mind on the latter.

Cat and the Shat: The Painful Realities of a Foodie on Chemo

Here I sit at 3am… awake again. I am partially to blame, maybe like 25%. The other 75% is chemotherapy's fault. You see, I'm a big time foodie. I love really good food. I love to critique food, I even had a food blog for brief moment in time (Chomping at the Bit). I most definitely LOVE to take pictures of pretty food! Last night was no exception. I took my man out for what I guess would be our anniversary, 8.12.2010. The actual day is Monday, but that is my chemo day. We're not married so I celebrate the day I first emailed him after 25 years apart, the stars aligned and out lives congealed into the spectacular jello mold of love. See, I can't even write without thinking of food. And I'm not even sure that Greg would notice if the day came and went without celebration. Me, on the other hand, I love any reason to go out an celebrate our love over good food.  

honey shrimp lettuce wraps ~ Grouper cheeks Piccata ~ dessert: we split the Mounds Jar

We had dinner at Marlin Darlin', a local Key West style dinner establishment. We hit the joint right at 4PM when they opened. No, I'm not an early bird with my AARP card (yet!), it's a trick I like to use to try and keep myself out of big crowds. The fewer people I'm around and the more I hand sanitize the better! That way I lower the risk of catching a bug that would set my chemo back a few weeks. Anyway … I ordered Grouper Cheeks Piccata, a linguine with a lemony caper sauce and tiny grape tomatoes. The grouper was broiled perfectly. It wasn't spicy and I thought it was something my stomach could handle. Guess what? I was wrong. So here I sit at 3am, literally running to the bathroom every 10 minutes like an Olympic sprinter, trying not to shat my pants! Don't laugh, it's a true fact and has happened to me a few times! It's just one of the many ugly truths that a lot of chemo patients deal with on a regular basis.

As I sit here, waiting to make another mad dash to the latrine, I can't help but imagine that this is a spell from a wicked foodie witch somewhere! She hates my love for food so much that she has placed a curse on me! Actually, the witch is a bitch and her name is chemo! I hate these harsh realities and the army of side effects that come along with them. It's more fun to make up stories in my head about wicked witches.

I have chemo cycle number 8 on Monday. I'm dreading the horrible week ahead, yet relishing the fact that I'll be done after four more cycles (that's 2 months), barring any unforeseen circumstances such as low blood counts or getting sick. Its far better to be on the downward slope of chemotherapy than the other side. If you're on the up hill climb, don't fret, just take it day by day, it really is the ONLY thing you can do. Try to occupy that chemo brain with something. I know books are hard to read right now for me. Even watching TV for more than an hour is difficult. Personally I occupy myself with writing, which is very cathartic or I just sit on my back porch, watching the birds at the feeder, gazing at my healing garden or enjoying an afternoon rain shower. Chemo makes you slow waaaaaay down, so do just that. Relax and relish the slow pace of life right now. 

An Amazing Lesson in Perseverance

Despite the physical ups and downs of this roller coaster journey, my soul is growing and learning so much. My heart is swollen and aches as I meet my new cancer friends and hear of their struggles. I wish I had a magic wand that I could wave and wipe all the pain and suffering out of their lives. 

This week a friend from way back in my High School daze, Mike McKenna, reached out to me. I have fond memories of chasing him down on a country road for a friend of mine (she will remain nameless but I believe the initials were KK) and I ended up ditching my mom's Impala. I digress …. anyway Mike learned through Facebook that I was now part of  the colon cancer club and he was kind enough to share his cancer story with me. He's a true cancer veteran. Not only has he gone through treatment once or twice but three times! The biggest lesson he shares is "don't give up." I told him if my cancer came back I'm not sure I'd do chemo again, it's such and ugly process and so hard on your body. He said the same thing but when cancer came back a second time his family talked him into it and I'm glad they did as he is alive and healthy today! He also said the second time the cancer came back, his oncologist said it was time to get his affairs in order. That pissed him off enough to seek out a new doctor a few states away who put him on a different treatment regime. Another good lesson, doctors are not always right! 

Mike was kind enough to share a beautiful letter his daughter wrote about him. He is allowing me to share this and said if it can ease one person's pain, then it's worth it. 

Thank you, Mike. Your perseverance is amazing and a great life lesson to all of us! HUGS!

"Your dad is sick with cancer." Those are the words that made my heart drop into my stomach. As I took a deep breath in, tears splattered from my eyes. As a sixth grader, I wasn't sure exactly how to react or what to think. I had heard of cancer before, but when my family sat down to discuss the illness I realized life wasn't going to be the same.

I am the middle child of three kids and had to grow up quickly. When my father was diagnosed with cancer, my whole world changed. The treatments for the cancer took my father's energy away and made him get sick often. As much as he could, he kept my family in good spirits, trying his hardest to come to every single baseball game my little brother played. The baseball games were hot and made my dad nauseous, but it meant the world to my brother for my dad to be there, so my dad would sit under a tree and get sick into a garbage can. My dad always tried his best to be there when he could. No matter how different my dad's body felt he wanted to show us that a person can be strong through anything.

After my father  found out he had cancer, he quit his job of 20 years  as a lawyer. My father's cancer was in remission, and he found another job. Not too long after my family lost everything due to a terrible house fire.

  The cancer has come back two more times, but my dad continues to work and support my family. Throughout my dad's battle with cancer, my family has struggled with multiple medical bills, replacing our belongings from the fire. Growing up, my outlook on life has changed because I have learned to move forward from struggles and overcome any obstacle in my path. With every setback, I have been more determined to work even harder in school with a schedule filled with advanced classes. While working part-time, cheerleading, and studying, my life is advancing to the next level.. It is my present and past that has made me into the strong and determined person I am today.

There isn't one moment in my life worth regretting or dwelling over. Every experience I have encountered has become a life lesson. In life there are thousands of reasons to cry, but there are millions of reasons to smile. With my experiences I have learned to live life appreciating that I have the people around me to keep me in good spirits through any obstacle. With so many chances in life to lose someone you love due to an illness, I've learned to value everyday with them. Life is about appreciating what you have and being grateful for everyday you have to appreciate it.

The F*CK CANCER Foundation

F*CK CANCER! 

Our girl Sharrel turned me on to this AWESOME site out of California called The F*CK CANCER Foundation. Check them out and buy some cool stuff to support the cause! I just ordered a T for Greg and me. 

Sharrel modeling her F*UCK CANCER hat & sticker that she just got from a friend.

Here is some info on the foundation....

The F C Cancer Foundation’s mission is to fight cancer by raising awareness and to educate about early cancer detection, ultimately putting an end to late stage cancer diagnosis. Through our Dyin 2 Live (Wish-Granting/Dream) program, we look to enrich the lives of those fighting cancer by offering them an experience that will bring joy, hope, inspiration, and courage to their lives. In doing this, the program hopes it can help give the patient a chance to forget, even if it’s only for a day what they are battling. We hope it can be used as a source of inspiration to those needing a brighter day in their darkest hour.

Through F C Cancer Foundation’s extensive network of friends, supporters, and affiliates, we are able to fulfill the dreams of individuals currently fighting cancer and present them with one of a kind experiences and opportunities. We feel that a Dyin 2 Live Dream can offer a source of inspiration for those undergoing difficult medical treatments and be a positive force that offers a life-changing impact not only to the patient, but also the family, donors, sponsors, and even entire communities to overcome their obstacles.

The first Dyin 2 Live Dream came true in 2011 when a small group of caring people and one professional athlete helped a boy fulfill his dream of meeting his favorite race car driver. Since then we have granted numerous Dyin 2 Live Dreams to patients in the United States.

Colon Cancer Screening Infographic

The sensitive issue of colon cancer screening is the topic of this infographic created for the nice folks at iTriageHealth.com to mark National Colorectal Cancer Awareness Month (that is in March). With research and writing by our team, this infographic offers a ton of information on a topic most folks know little about.

by InfoMonkeys.
Explore more infographics like this one on the web's largest information design community - Visually.

Voted World's Best Zen Blog

Thank you to The Daily Meditation for voting "Finding Zen with Cancer" one of the top Zen Blogs! 

Paul's write up said....

Finding Zen With Cancer: Finding Zen With Cancer is the blog of Linda, who, as she states in her opening paragraph, has had an up and down kinda life. Her life experience fuels her writing, making for enlightening and inspiring stories about Zen and about life in general. The best part of Finding Zen with Cancer is the personal touch that Linda puts into all her writing. Within a few minutes of reading you’ll likely feel like she’s a long lost friend. Great stuff!

Thanks Paul! And if you're looking for a great mediation and yoga site, check out The Daily Meditation for yourself!  

Time for YOU to Call the Doctor!!

My head is bursting with so many thoughts right now, I just have to get them written down! The big one that is rolling around in my skull right now, that I am so grateful for, is that I was able to save a life through my blog! I know it sounds a bit wacky, dramatic and a maybe a bit boastful (and I'm really not bragging here, I'm trying to prove a point), but a good friend of from my childhood decided that she wasn't going to wait until 50 for her colonoscopy after reading my blog and had her procedure done at 48. I don't believe she has any family history, she was just motivated, didn't not want to take any chances, so she went to get one. When she did, they found polyps. I heard that news and my heart sank. It was a long week before we found out that the polyps were benign!! If all that ever comes from this blog is that ONE thing, then it was worth every single minute I put into it, times a trillion!! Thank God she didn't wait two more years, I shutter to think how tragic the outcome would have been. So kids, let this be a lesson to you! If you're having any stomach issues on a regular basis, have a history of colon cancer, or just have a 'feeling' something isn't quite right, then GO, RUN, VAMANOS! to the nearest gastroenterologist!! 

The other heartwarming and heartbreaking thoughts that are rolling around in my head are the incredibly strong and brave colon cancer warriors that I'm meeting online. As I try and grow my blog, I'm reaching out in search of guest writers who are at different stages in their treatments and can offer a new perspective on this hellish disease. So far I've met two bloggers who have blown my mind in the short time I've known them. There is Cory, an Egyptian boy who is back in the US for treatment. He has Stage 4 cancer with Mets to the liver (not sure what that is) but he is a survivor! He was diagnosed in Sept 2011 and his oncologist in Germany painted a pretty grime picture. She told him to enjoy that Christmas because he probably won't see another. To that Cory said "screw her." He is now coming up on his 2nd Cancerversary and feels great! Then there is Belle. She writes for the Colon Club once a month and also for Get Your Rear in Gear on FB. Belle is also a amazingly strong woman. Here is what she wrote me, "I am stage 4; I'm on chemo for life.  It's a very different place from where you are right now and one that I hope you never experience. Stage 4 is not a place of sunshine and roses.  I have "hope"; but it's a different type of "hope" than when I was stage 3." I was reading her email out loud to Greg last night and the tears flooded my eyes. I cry just reading it again. What an amazing woman, so much strength and positive will driving her forward during horrible circumstances. You think I'm strong? Not even close to what this chicky-poo has going on! I can't wait to share some of their posts with you! 

NOW, let all this be a lesson to those you out there that STILL haven't made your colonoscopy appointment yet, time to get OFF YOUR BUTT literally and go!! I really can't stress that enough. Thank you, my work here today is done! Love y'all ツ

Inside Cancer Girl's Head ... Warning: It's a Very Scary Place! ;-)

I can't speak for all cancer patients going through chemotherapy or other types of cancer treatments, however I believe that what the collective 'we' ponder on any given day might be very similar. For instance ...

• I think about my mortality. 
• I wonder if my cancer will be gone after treatment. 
• I ask myself, why did this happen to me. 
• I wonder why those who I thought were friends (even family) have abandoned me during this time. 
• In contrast, I think about my true blue pals who support me from afar no matter the distance. 
• I question when the proverbial "they" will find a cure for this dreaded cancer plague.
• I ask myself why I'm doing this and what if I give up treatment now verses seeing chemotherapy all the way through. 
• I think about what I would do if my cancer comes back. 
• I wonder why it seems that cancer is everywhere lately. 
• I also consider how my life will be different after my treatment is over. 

Join me as I expound on a couple of my cancer musings ...

First, let me address how everyone tells me that my life will be very different after cancer. I don't doubt that for a second. I think back to other big life changing events in my life and I know it to be true. Right now I don't feel any different, but I know I'm going through an evolutionary process in my cancer cocoon each and every day. Looking back I can see how much I changed after my children were born. I changed dramatically after each of my parents died. I changed after my divorce. How can one stare down death's door step, walk away unscathed and not be changed forever! I believe these life changing events are tossed our way to grow and mold us, kinda like karmic lessons designed to advance our soul to a higher level of enlightenment. How you handle each event and how it affects your life is totally your choice and that in itself is part of the lesson too. 

And why, why, why does it seem cancer is EVERYWHERE right now? I call it the new car theory. It's like when you buy a new car, like a Acura TSX (I'm bias), and you're driving your new car down the highway or to work, and suddenly you start seeing Acura TSX's everywhere! The same goes for cancer. You sit unaffected for years and then someone you love gets cancer or worse, you get cancer. Now you're hearing something about cancer virtually everyday! Lately I've been seeing or hearing about people on the morning news or on talk shows who are fighting the good fight against one kind of cancer or another. These tear jerking stories are heartfelt, however as a patient going through the good fight, I find the majority of these stores are about those who left a major footprint in the lives of others but are no longer of this earth. That really doesn't give me motivation, Mr. Lauer. Sure I can dig for those 'survivor stories' but I know the freakishly, morbid minds of journalists and the story is always better when there is a dramatic ending. What could be more of a dramatic ending than death?  

Here is an example … it took me less than 30 seconds to pull these off twitter using the hashtag CANCER.  (BTW, follow me on twitter at twitter.com/TVPromoGal)

Magazine editor Linda Lewis shared life with readers 

Linda Lewis - magazine editor

Bittersweet moment as cancer-stricken boy, 2, serves as the best man at his parents' wedding after they brought it forward when doctors gave him just weeks to live.  

Christine and Logan Stevenson

David Flemming, Man With Terminal Cancer, Writes Incredibly Inspiring Blog On Nashville.com 

David Flemming

Tyler's challenge to walk from belper to Skegness in memory of his nana  

Like the many questions I ponder above, in contrast I have made choices along the way.

• I choose to blatantly expound on LIVING with chemotherapy via my blog and eventually put my cancer behind me. 
• I choose to take my chemotherapy and work like hell to kick cancer's ass. 
• I choose to believe that this happened to me as a random life lesson, it's nothing that I caused. All of this will make me a stronger person in the end.
• I choose to sever ties with those "friends" who disappeared through my treatment and never look back.
• I choose to forever cherish those friends who have made beautifully, valiant efforts to support me in this battle from all across the country and around the world. I love you all dearly!
• I choose to embrace all cancer fighting efforts in hopes of demolishing this evil disease. 
• I choose to continue my fight, no matter how down trodden, weak and sick I may feel with each compounding treatment. 
• I choose to believe that I have caught my cancer early enough and in the immortal words of Kanye West, it'll only make me harder, better, faster and stronger once my treatment is done. 

In the end, my friends,  it's all about how you deal with the cancer card you're dealt. It's your choice. This gal chooses to live life to the fullest once this bitch called cancer is behind me. Whose with me!?!

Fatty-boom-ba-latty

I know I'm not suppose to give a shit about my weight while under going cancer treatment, but guess what?  I do. I'll chalk it up to the ego again. Just like my phobia about losing my hair, I feel the same about gaining weight. I always had a vision that cancer patients were frail and bony. That very well may be the case with some chemo meds. In my case, I thought it was difficult to eat and keep food down. Not the case with this gal. Apparently those fun steroids that keep me up all night are also responsible for the extra 12+ pounds I've packed on since May. 

The thing that healthy people don't quite comprehend is the toll that cancer takes on your self esteem. Everyone tells you to focus on the fight, keep positive, don't give up. I  know all that is important. It's a daily challenge to keep those thoughts top of mind. But here's the deal … I had grown to love my long hair and the idea that I can cut and color it whenever I want to! As it stands today, I have no say in that process. Previously I had control over my physical health. If I started packing on a few pounds I would kick up my exercise routine or keep an eye on portion control and cut back on the carbs. If I wanted a new look, I'd call Erin and schedule a cut and color. Right now none of those things are options. It is a tremendous mental and physical challenge to go from being a strong, active, living life to the fullest person to a sickly, dependent, bedridden lump of flesh. It's like running full speed and coming to a complete stop and none of it is under your control. 

One of the many rotten things about chemotherapy for colon cancer is that it's difficult to eat healthy. You can go into it with the best intentions with diet plans and recipes and come out on the other end in severe belly pain. I love salads, fruits, veggies, especially in the summer months. Too many of those good things can send me into severe stomach pain or worse, spending the day in the bathroom. Carbs are one thing that seem to settle well with my chemo belly. And sadly sugary snacks too. I've re-developed a nagging sweet tooth that I was able to subdue several years ago. Just those two things combined are enough to account for my newly acquired LBs.  

So to all my chemoites out there, don't feel bad about feeling bad over the superficial stuff. We're only human. If you're disciplined enough that you don't give a shit, then God bless you, you're a bigger person than I. But if you feel down and sulky, that's OK too. Don't feel that guilt over posting a Facebook profile picture from your lovely hair days if it makes you feel good! That is you. And without sounding too Doctor Seuss-ish, the you you are now is you too! Embrace them all. It's OK, you have permission because you are the only one on this journey, everyone else is a bystander. And hopefully supportive bystanders! In the end, regardless of our weight, awkward bodily functions and lack of hair, us chemoites will come out on the other end stronger, braver, and better looking than we were before! It's all part of this crazy-ass process, my friends.