#19 Breathtakingly Beautiful

It's been a month since surgery. And I'm happy to report that my recovery is going really well. Over the last week or so, I can tell a significant increase in my energy levels and decreased fatigue. I'm back to work with all my executive coaching clients and active in my role as CEO with WebVitality.

Two walks a day has been an important part of my recovery and strengthening regimen. My iPhone tells me I'm averaging over 6,000 steps a day, the equivalent of three miles.

In my follow-up appointment last Friday with my surgeon, Dr. W, she confirmed after checking me over that I was healing as expected. My next meeting with her will be to prepare for my next surgery which is to remove my ostomy, six to seven months from now.

Earlier this week I met with Dr. X, my oncologist, and got my plan for the next five months. Starting March 27, I begin six, three-week cycles of chemotherapy.

Day one of each three week cycle will include a half day of Oxaliplatin chemotherapy delivered intravenously. The same day, I will also start 14 consecutive days of oral Xeloda chemotherapy, the same regimin I was on before surgery. At the end of each two week cycle, I'll get a one week break before I go back again for the next cycle.

While this treatment is a whole layer more intense than I expected, it was recommended by a panel of other oncologists, along with Dr. X as the most prudent approach, given my situation. They strongly recommended this treatment as there were still active cancer cells in the tumor that was removed from my rectum. The goal is to stop any remaining cancer cell activity that may have been dispersed in my body as a result of surgery.

I expect that the next few months will be tough, as I experienced side-effects during my initial chemotherapy treatment before surgery. But I feel very confident in the direction we are headed. I'm working with a naturopathic doctor with a cancer speciality to support my food and supplement choices during this next stage. I am grateful to have a really good medical team in my corner.

Frankly, the hardest part of the process so far has been the ileostomy. Along with the weirdness of pooping out of my abdomen into a bag hanging off me all day long and getting used to the 8-10 bathroom emptying procedures per day, changing the entire ostomy collection system every three days has been the most trying.

The ostomy nurses make the pouch change quickly with skill and precision. But on my own, it has been a real challenge. Some days I feel like I'll figure it out and be okay. Other days, it's a nightmare.

The process includes removing the three-day old sticky, bandaid like adhesive patch that holds the pouch to the skin, cleaning the stoma (the actual small intestine that sticks out from my belly), cleaning and removing the glue that held the old pouch in place, shaving the area for better adhesion, measuring the ever-changing size of the stoma by mirror for the new device and gasket, cutting the device opening to go over the stoma, flexing and adjusting the protective gasket to fit the device, preparing the skin around the stoma with a protective product, drying it, making sure everything else is dry, then finalizing the process by sticking it all down on the skin and holding it for three to five minutes to ensure the adhesion works.

And, while in theory, that should not take long once I know the process, the fact is, I cannot control what is happening with my small intestine and don't even know or feel when it is about be active. So, I'm racing against intestine time. If my intestine is active, I have a mess on my hands. And depending on what stage of the change process I am at when that happens, I might have to go back and repeat one or more of the previous steps.

Last week, the typical 15 minute change actually took over 80 minutes. By minute 40, I was so discouraged by the process I was in tears. Tears didn't help though, because I couldn't see what I was doing as a result. So I had to ask Becky for help. And, with my deteriorating emotional state, I even got angry at her too. It was not my finest moment. But with her help we finally got the pouch on and adhered.

It's was a pretty surreal experience to say the least.

Imagine standing naked in your bathroom, trying to get a new, unlearned process to happen quickly and without incident. Then, having liquid poop either dribble or squirt out of you at the most inopportune and unexpected times on the bathroom counter and floor, somehow fully missing the strategically-placed paper towels and other towels meant to accomodate this possibility - all happening in front of your significant other. It's exactly what I experienced.

I felt helpless, humbled and exposed in those minutes that felt like hours. Unable to accomplish the task easily, I couldn't shake the emotional intensity and tears that showed up in me.

And in that moment, Becky stepped in and helped. No judgement or retribution even with my emotional response to her. Just pure love, unconditional support and action.

I felt a new and different kind of intimacy with Becky that's hard to describe here. In that raw, messy, humiliating situation for me, without blinking or hesitating, she jumped in to get the tasks of my ostomy pouch change complete. I experienced a deep, enhanced connection coming in the crap.

It took my breath away.

A precious and beautiful gift emerged from this messy, unpredictable 80 minutes of my life. It's one of many I have experienced so far in this journey I've been on.

Melody Beattie, in her book Journey To The Heart writes,

"When we're lost, when the way gets dark, sometimes we see things we never would have seen in the daylight. Sometimes the lessons we learn in darkness are breathtakingly beautiful."

Then she adds this simple poem.

"Enjoy the sunshine, but trust
the darkness, too. It is more than to
be endured. It is to be experienced,
and later cherished."

I will forever cherish those messy, dark moments I experienced in the bathroom last week with Becky that would have never have happened in everyday life.

It was breathtakingly beautiful.

I do not know what you may be experiencing today. If you feel lost or face some kind of darkness, I'd encourage you to stay present to it as you may discover something of beauty hidden there.

Much love to you today.

I am grateful every day for the gift of your support, encouragement, interest, thoughts and prayers.

Till next time,
Tom

10 Comments

  1. Tom Dumez on March 16, 2017 at 7:45 pm

    Much love to you my friend. And know that many, many prayers on your behalf are being lifted up to our Lord. I look forward to catching up with you next week.
    Tom Dumez



  2. Leslie on March 16, 2017 at 7:48 pm

    Tom, I am grateful to read an update on your progress. Thank you for your honesty, vulnerability and love. Michael and I are sending prayers your way.
    Love, Leslie Marchand



  3. Jan Easton on March 17, 2017 at 5:28 am

    Ok…..I’m crying and giggling all at once…..thank you for your honest and vulnerable replay of a humbling and messy experience! It gives me some understanding of what you are handling every day AND you are a wonderful example to me to be “real” not fake!
    Blessings, prayers and love to you and Becky!



  4. Paul Spitzer on March 17, 2017 at 5:45 am

    What doesn’t kill us, makes us stronger; way to hang in there and on having a strong and beautiful wife.

    Hope we see you soon,

    Paul & Mb



  5. Nate Segall on March 17, 2017 at 5:51 am

    So very happy to hear that you are on the road to recovery. Tough couple of months ahead, but you are in a good place, with the support you need. You’ll do very well. It sounds like you are finding much strength in your moments of weakness. Looking forward to seeing you next week.



  6. Ray Denny on March 17, 2017 at 6:17 am

    Tom,

    Now, I’m tearing up with goose bumps that will not stop. Thank you for sharing your strong will, determination and Becky’s love.

    Know that we are all with you both.



  7. Vlad Vasak on March 17, 2017 at 4:22 pm

    Tom, so glad to hear that you are progressing well. No matter how bad a day any of the rest think we might have had, that pales into complete insignificance, compared to your experiences. I truly feel for you and wish you a continuing recovery. Look forward to seeing you at NAID next week!



  8. Susan Kruger on March 17, 2017 at 11:52 pm

    Thanks for sharing your story. It was delivered smack in the middle of a fight between me and Brian. We had arrived home and huffed off to separate rooms, both of us likely searching our phone for a distraction from the agitation. I assume he read your story about the same time I did because that was the end of our fight. It certainly put things in perspective for us. You and Becky are both ultimate champs!



  9. Dawn Connelly on March 18, 2017 at 4:20 pm

    Tom thank you so much for your update. I was laughing out loud but at the same time my eyes were welling up with tears. Thank you for your vulnerability. You are such an inspiration and have endured this not-by-choice journey so beautifully. I only pray I would be able to embrace it with such grace. I was reminded of how being a mom to 4 young kids makes poop a daily part of my life! It happens. It’s all good. . . it’s how you handle it and you are doing a phenomenal job!!



  10. Uncle Andrew & Aunt Sharon on March 18, 2017 at 5:56 pm

    Tom, We just want you to know that your cousin Mark prays for you by name every day before he heads off to his work at the hardware store, as well as we both. May God use these circumstances for your blessing.