Thursday, December 27, 2012

Happy Holidays 2012!


I hope that you all made some great memories over the holidays as I did.  Here is a pic of the kiddos with their new blankets compliments of their Grandma...such talent!  We had a wonderful Christmas and got to spend lots of time with great family and friends.  

It has been a little bit since my last update and I apologize for that.  It has been a rocky road lately but nothing we can't get through.  I will try and give you a rundown of what has gone on since this past summer.

I completed my Folfox treatments in August of 2012 and was scanned in September.  I had a nice break from treatment and during that time was able to take a trip down to see Dr. Alexander at the University of Maryland.  We went to check into a procedure called Cytoreduction and Hyperthermic Interperitoneal Chemotherapy (HIPEC), a mouthful, I know.  It is truly as complicated as it sounds and you can actually watch one being performed on their website http://webcasts.umm.edu/videos/hipec  which is pretty cool.

Our decision to look into this procedure was because there were 3 small spots found on the scan as well as a rise in my cea  levels which pretty much tells us that there is still something going on in there and that my journey to NED land is not yet done. I had originally planned on doing radiation but after further research decided that surgery is my best option.  I learned that radiation can cause a lot of scar tissue and there have been cases before where the radiation did not kill the cancer, it just buried it in scar tissue taking surgery off the table as an option at all.

My new course of action is 3 months of a new line of chemo treatment called Folfiri of which I have 4 of the 6 treatments done so far.  After this, I will scan to see where we are at and then hopefully have surgery in early-mid February.  The recovery will be lengthy but I can do it...I will simply throw on my superwoman cape and keep on keepin on!  After surgery he wants me to finish up with 3 more months of the same chemo as “clean up”.

One of the bumps in my path recently was concerning my left ureter.  I went to the ER on the Friday before Thanksgiving because I woke up with a fever and was throwing up.  During this visit I had a CT scan where the doctor determined that I had “no visible signs of cancer” but I did have “a 4 mm kidney stone”.  I was sent on my way with a script for Flo Max and directions to drink pool fulls of water.  That following Monday I woke up with a high fever again and was told to go back to the ER.  After a gazillion more tests they sent me home with a 103.7 fever with “unknown cause”.  I was to go home and rest as being in the hospital was more dangerous than being at home.  I had the fever on and off for a few days and then it cleared.

I was off to my next round of chemo treatment that Tuesday, however with the  kidney stone and fever my doctor said he wouldn't treat me.  He found a urologist that was willing to meet me at Ellis to go up and get the stone out with a claw like tool.  This is all I could envision:


Anyway...to make a very long, boring and frustrating story short....after 2 scans, 5 procedures and multiple doctors appointments we discovered that I never had a kidney stone and we actually don't know what is causing the blockage in my ureter.  I have a stent in there currently and it will be addressed during my surgery.  It is very frustrating to have 13 doctors and not be able to figure out what is wrong with me.  I have decided to have this t-shirt made up to wear to all of my future doctors appointments, what do you think?  


Despite this mess, I have had way more great times than bad:

I had a great visit with my sister on Halloween, oh how I miss them!


I also just recently went down to Florida with the hubby to visit family and friends.  This was the first vacation for just Mark and I since the kids were born and it was very much needed.  We got sleep in every day, go fishing, go out on the boat, meet some great new friends and visit with Moe, Bob, Luke and their newest little bundle of joy, Meara.  She loves me by the way and was very sad to see her Auntie Shell go, I miss her already!

And, of course, the holidays were terrific.  I even had a surprise visit from my peeps at work whom showed up at my door caroling complete with Santa hats and beautiful smiles...I love you guys!!!

So all is well in Michelle World and I intend on keeping it that way.  I promise to update more often!  Love you all and hope all is well with you and yours!

Monday, November 26, 2012

Take Action - Save Lives - Ask Your Representative to Co-Sponsor H.R. 4120


The Affordable Care Act (ACA) requires insurers to cover preventative services, including colonoscopies however there is a loophole that allows the procedure to be classified as a treatment rather than a preventative services in the case a polyp is found and removed.  This can cost $1000 or more.

Click the button below to find out more information.  The site offers an easy way to contact your Representative to tell them to support a bill (H.R. 4120) which will remove this loophole.

Saturday, October 6, 2012

Updates


It's been quiet around here on our website lately but we have been busy behind the scenes.

First and foremost, Michelle wrapped up her last round of chemotherapy back in August and a few weeks ago she had a PET/CT scan.  There are no signs of metastasis in any major organs however three small spots are showing near her tailbone, belly button and upper abdomen.  It's hard to say from the scan what these are, they could be tumor growth or inflammation.  But after some blood work this past week it's clear that there is some more cancer growth.

The original second round treatment plan was to do 6 weeks of radiation in the pelvic area, but there is now a concern about some of the spots not being in the radiation field.  Therefore, we have been busy arranging for a second opinion and Michelle has appointments scheduled over the next few weeks to help come up with the next best course of treatment.  We are getting opinions from the best doctors up and down the east coast, so rest assured that she is in good hands.


In "Yes We Can Sir" world, here is what we have been up to:

We participated in the "Get your Rear in Gear" event in Saratoga Springs, 
NY last month.  We had fun and over doubled our goal of $500 by raising over $1000!  Thank you to all who participated and sponsored us. The money raised went to the Colon Cancer Coalition

We were so successful raising money to help Michelle and now she wants to pay it forward.  So back in July we submitted our paperwork to officially obtain non-profit status.  We are still waiting for the good word but hoping we hear back soon.

More updates to come...so stay tuned!



Friday, September 7, 2012

Get Your Rear In Gear!


Our team is participating in the 2012 Saratoga Springs Get Your Rear In Gear 5K Run/Walk, a event to benefit the Colon Cancer Coalition. We want to make a difference for the thousands of people in our community touched by colon cancer. The funds we raise will stay right here, helping with prevention, early detection and treatment for this disease.

We are very appreciative to have this oppurtunity to help spread awareness for colon cancer.    Please support our efforts to build hope and beat colon cancer! Thank you in advance for your help.

The race is September 22, 2012 at 8 AM.  Visit our team page to sponsor us today!

Monday, September 3, 2012

The "Gifts" of Cancer

This is not for those with a lack of humor!

Since my diagnosis of stage IV colon cancer (cancer said in a whisper), in February of 2012, my life has been flipped upside down.  From surgeries, port implants, anesthesia induced marriage proposals (story for a later date), chemotherapy, hair loss, colostomy 101 and numerous other rocks in my path, I can truly say that cancer has been in more ways than not, a gift given to me.  I mean this in the most positive way.  Since my diagnosis the following has been realized:

  • I can truly appreciate every minute of every day and live in the moment.
  • My appreciation for life has increased ten-fold!  I can no longer even squash an ant for that matter, my sister Jen can account for that as I had one come with me to treatment one day and we let him go in the room, only to name him Charlie (our Chemo room pet) HA!
  • I could care less about money and while most wish they could win the lottery, I fear that will happen to me. If I won the lottery, I would be “expected” to quit my job and then wouldn't have the insurance to pay for the millions of dollars that my cancer fighting arsenal runs!
  • My physical health, although truly being tested by chemo, is the best it’s ever been due to changes in my lifestyle and diet.  Also, when I want to splurge….I could care less, after all, how much worse could it be…I have cancer right!
  • My pride-out the window.  This means I get a lot of help in a lot of ways and without any prideful guilt that I don’t deserve it.  Not many of you get your laundry done, bills paid for you, house cleaned and meals cooked for you on a weekly basis….I do. :) This one I will take advantage of while I can because I know that WHEN I become clear of this beast (NED in cancer terms), that will probably go away!
  • I have learned that this disease is, most of the time, harder on all of you (my family and friends) than it is on me….Sorry!  This, I consider a gift, because not sure how I would handle it if it were not me…I am such a control freak!
  • Fear is no longer in my vocabulary-as Melanie so wisely said “I will not fear cancer, it simply means Yes I Can Sir”!
  • I can actually FEEL all of the prayers and positive energy directed at me, mostly in the wee hours of the night.
Did I mention the never-ending stack of “cancer cards” I now have in my possession?  This is like MasterCard would say, “priceless” although my boss’s at work are starting to catch on and I cannot utilize them at work as freely as I used to because they like to tell me, ”you used to have cancer, not anymore”. :) I love their attitude and they treat me as they would their own family.

While nobody wants or deserves cancer, the experience has changed me in amazing ways.  I am realizing more and more the "gifts" every day and one could only be as lucky as me to get CANCER (shouting now).

Love Y’all!
Michelle

P.S.  And I am pretty sure if I asked, my dad would buy me a pink pony and an island in the Bahamas... 

Saturday, September 1, 2012

Why The Elephant You Ask?


Since discovering a "concerning mass" in my colon in mid-February, I had been trying to avoid detailed discussion of news in front of my oldest son Marcus who is 10 but had been a bit more lax in front of my 4 year old daughter Sophia.

It was the night before my surgery to remove the mass and I was on the phone with one of my dearest friends Kelly Ann.  We were discussing all of the things this could possibly be besides cancer (it is amazing how creative you can get in times like these).  My daughter Sophia was in and out of the room so it is unclear between this conversation and others before how much she had overheard.

Later that night, Sophia asked me to draw her a picture of our family for her to color. So I did, but please don't judge me for my drawing capabilities, for some reason or another, my dear mother didn't care to pass down her art skills to me, thanks Ma!

When Sophia was done coloring she brought the drawing to me and my breath caught when I saw how she had colored me all in red.  Our conversation then went like this:

Me: Sophia, why is mommy covered in red dots?
Sophia: Cause mommy.....the killers killed you!
Me (with heart stopped): What?!? The killers killed me...why?
Sophia: Because Ma, they wanted to show you a present in the woods but you wouldn't see it?
Me: Oh gosh...so mommy is dead, that makes me sad.
Sophia: No silly mommy...then a big white elephant came along and sprayed you down with his trunk and you were all better!

Phew, right....thankfully there was a happy ending to the story, at least that's how I will choose to see it.   Children amaze me.   It very easy to confuse a child's limited vocabulary with a limited comprehension, but clearly Sophia knew something was going on.  And I know some people believe that kids at that age have an “ability” to see things where adults do not and I tend to agree!

~ Michelle 




An even more poignant twist to this story is while recovering from her surgery in the hospital, one of the nurses taking care of Michelle had an elephant tattooed on her arm!

So as we started planning the benefit for her, the image of an elephant was so perfect as a t-shirt design. An elephant's behind is even more fitting to represent colon cancer.

The vision was for the elephant to "spray" blue ribbons. But Michelle did not want the focus to be solely on colon cancer, as one of her pet peeves is how segregated cancer awareness can be.  The attention to breast cancer has risen dramatically with the pink ribbon campaign and has made great strides, however colorectal cancer remains the second leading cause of cancer deaths in the United States.  The fight to end cancer should be a universal fight to end all cancer.  And so our final design shows an elephant spraying multi-colored ribbons to raise awareness for all cancer.  Because all cancers, no matter what kind, have the same earth shattering impact on the diagnosed, their family and their friends.

~ Sandra