“Say Hello To My Leetle Friend’

This one falls under the catagory of "Full Disclosure"

 I don't often buy "message" T-shirts but this one struck a cord with me.

This shirt is sold by Til Valhalla Project, a non-profit that focuses on U.S. Veterans issues.  They produce inspiring, patriotic t-shirts and other items to enable them to supply memorial plaques to veterans and their families.  They have provided 9,000+ hours of therapy and donated over 1.3 million dollars to veteran’s issues.

This one appealed to me on many levels.  It made me start thinking more about the Be Kind efforts across the nation.  Imagine if we all started to think this way before we judged someone, or lost our temper at the driver who cut us off in traffic, or engaged with someone who doesn’t think the way we think.  Wouldn’t the world be a better place?  We really do not know what others may be going through.

                                           Now we who are strong have an obligation to bear the weaknesses

                                      of those without strength, and not to please ourselves.  Each one of us is

                                                  to please his neighbor for his good to build him up. 

                                                                                                                    Romans 15:1-2

The topic of today’s blog is a subject I have generally withheld up to now.  Some may file this under “TMI”, (too much information.)  Others may not even finish reading it…thinking it a “crappy” topic!  Even those closest to me and already know, think I’m crazy for sharing this.  But, my mission with this blog is to help people with cancer to have courage, hope, faith, and strength to endure everything that might come with a cancer diagnosis.

Followers of this blog might recall my Meso cancer surgery on July 15, 2022.  What I’ve never written about is that I woke up that day in my hospital bed with an ileostomy.  

“An ileostomy is a surgically created opening in the abdomen in which a piece of the ileum (the lowest part of the small intestine) is brought outside the abdominal wall to create a “stoma” through which digested food passes into an external pouching system.” (From Ostomy.org)

Ostomies are often the needed in the case of disease or surgery in the gastrointestinal tract. The procedure is designed to avoid blockage following surgery.  Ileostomies divert the small intestine and Colostomies divert the colon.

Here’s a short video that illustrates the digestive process and describes my ileostomy (I have a double-barrel!)

https://youtu.be/PVvRIBg_7CA?si=c627_3eCFZnHM2HV

In my case they removed another section of my colon during my recent cancer surgery and installed the ileostomy.  I say “another” section because I had a large section of my colon removed during my colon cancer surgery in 2005 and also woke up with an ileostomy.  Luckily, during that surgery they removed all the cancer and the ileostomy was temporary to let my colon heal.  They removed it several months later.  

This one is for life.  Before I go further, let me explain that I’m not looking for additional sympathy.  However, it is a major life change and it took some time for it to become our new “normal”.  When I say “our” of course it means Diane.  She is such a blessing, I can’t imagine how people who live alone can handle this process.

I didn’t talk about this to anyone except family for many months.  We had a lot to learn about the care and application of the external appliance.  We had a few “accidents” in the beginning.  You see, I need to empty the bag 7-10 times a day as it fills with liquid waste every 3-4 hours.  And, we change to a new bag every 3-4 days.

And, I hated it.  I hated this bag on the side of my waist from the moment I woke up from surgery.  But, the longer I’ve had it, combined with our research, we’ve learned that the ileostomy is a life saving procedure.  It’s easier to feel grateful when you think of it that way.

Lately, I’ve come to terms with this undertaking.  Partially because we’ve been doing it now for 15 months and we’ve spent time online learning tips and strategies to maintain a normal lifestyle.  As I gained my weight and strength back, we began doing all the things our active lifestyle entails.  For pickleball and softball I have sports belts that hold the bag in place and a plastic cover over the organ that lives outside my body, in case I get hit by a softball or slide into second.  

But one other thing that’s helped was in a blog I read by an ostomate (that’s what we’re referred as).   She felt the way I did and wrote that things got better when she accepted her fate and gave her ostomy a name.  She named hers “Rose”.  

So, in the words of Tony Montana from Scarface, “say hello to my leetle friend”…Baxter.  Get it?  Baxter…say it slow….Bagster?  He’s not so bad anymore.

I’ve been preparing this blog for a few days with the intent of finishing it today, which happens to be National Ostomy Awareness Day!  Who knew?  This is my effort to bring awareness to all of you!

I’m pretty sure you’ve met someone with an ostomy without knowing it.  One in 500 Americans have some kind of ostomy.  Nearly one million people in the U.S. have one and 100,000 new ostomy procedures are performed each year.  Be Kind, you just never know.

The Latest Treatment

We got back from my treatment at MDAnderson on the 27th and things are still on track.   My bloodwork was basically very good and my CT Scan again showed a slight reduction in the size of the tumors.  I’ve been on this experimental medicine since January and this was my 3rd scan.  All of the scans have shown  a reduction in the size of the two measurable tumors.  We praise God for the researchers, the scientists, the doctors, and everyone whose passion is to develop new treatments and care for the patients who receive experimental medicines.

Alaska Time Coming to an End

We have been truly blessed with our last 6 months in Alaska.  We arrived homesick, and we are leaving fulfilled.  We’ve had an amazing summer catching up with lifetime friends and family, camping in our old Minnie Winnie, and embracing our Alaska home.  If you’re a regular reader you know that we took a trip to MDAnderson every 28 days (5 times from Alaska).  We took the opportunity to make a few side trips to visit other friends around the country, the latest being a visit to Chicago and Lake Michigan.

We visited John and Leeann who lived in Chicago in the past and now spend the summers at their Beach House in Michigan City, IN on the shores of Lake Michigan about an hour south of Chicago.  John was raised in Chicago and gave us an insider’s tour of what makes Chicago a special American city.  

We visited “The Bean”

        A tour of the famous Wrigley Field!

A view of the harbor and Lake Michigan

    

                                                                                                   

                                                                        An amazing day at a Norte Dame Football game!

And, of course, some pickleball and a day at the beach!

John is from a family of 10 children and many of his siblings also have beach houses in Michigan City.  We had 22 of us at the Norte Dame game, and we made a lot of new people that week.  Here’s a photo of
one of our last nights at the fire pit in John’s backyard.  It was truly a special trip with some special friends.  

                             

We head back to Phoenix on October 15th for the season and we’re looking forward going “home”.  A wise snowbird once told us no matter which home they are headed to….they are headed home!