The Journey Ends (Updates from August 21 – August 31, 2015)

What follows are the last few updates from 2015’s journey with lymphoma. Next week, I’ll post the final installment — An Unexpected Journey, Part 11 of 11: Looking Back in Gratitude. These were originally shared on Facebook, but I am reposting them here for the non-Facebook crowd.

August 21, 2015 – Funny Moments Before Surgery

I’ll do a more detailed note later, but in the meantime I have a quick request and a few memorable moments to share.

First, any positive thoughts and healing energy are most appreciated today. I’m heading to the hospital this morning for robotic surgery. Dr. Ankit Bharat is using the da vinci Surgical System to biopsy or remove whatever in my chest is lighting up my PET scan. Dr. Gordon, the oncologist, is 95% certain it’s nothing to be worried about, but none of us are fans of uncertainty.

A big lesson from this journey has been about letting go and trusting—one of the key reasons I am more than happy letting this great team of experts do their jobs without any second-guessing or second opinions. When I heard about Dr. Bharat’s work with robotics, I decided to Google him only because I find cutting-edge technology fascinating and wanted to know more. With three small 1cm incisions, Dr. Bharat will be able to direct the robotic instruments under my sternum to the former site of the primary tumor just above my heart. It’s mind-blowing to realize technology has advanced to the point that this type of chest surgery is considered minimally invasive.

I always thought the only operation more maximally invasive than chest surgery was brain surgery.

As cool as it is to think about the use of robotics in surgery, I have to admit I’d find the procedure even more interesting and inspiring if it were being done on someone else. Anyway, my curiosity about Dr. Bharat and robotic surgery was satisfied after a mere five minutes of research. That’s when I found a recent article talking about his commitment to a family when one of his patients died following a lung transplant. The first two paragraphs told me all I needed to know:

RESEARCHERS SOLVE MYSTERY OF DEADLY TRANSPLANT INFECTION
“When Harlan Dorbin passed away from a rare infection one month after his successful lung transplant surgery, his surgeon turned to Dorbin’s sister and made a promise.

‘I told her I would get to the bottom of this,’ said Ankit Bharat, MD, a thoracic surgeon and surgical director of the Northwestern Medicine® lung transplant program. ‘It was a perfect operation yet this infection caused an abnormal buildup of ammonia that a person’s body can’t sustain. It’s rare but it’s almost always fatal. No one knew the cause or how to prevent it. This simply wasn’t acceptable to me.’”

If Dr. Bharat’s hands are even half as good as his heart, I have every reason to be confident and optimistic.

FAVORITE MOMENTS OF THE WEEK
My first favorite moment happened when I received the following email from Tracy Chapin, my high school classmate. I feel compelled to share because it was so stunning and unexpected. It also gave me a great sense of peace.

“Hi Rob– I want to share with you a vision I had. I was lying in Savasana at the end of a recent yoga class. I’ve been working hard to be able to clear my mind during this pose and usually do so by finding my way to my ‘happy place’ – a beach on the ocean. On this day, with my eyes closed, I found my mind at peace when a bright light came into view. It was a bright white light, filled with love and healing and in the center of the light was you. Not you as a person – I didn’t actually see a human standing in the light – but you as a spirit. It was clear it was you. It was almost as if this light was bursting out of you. After about 15 seconds the vision slowly disappeared and I was filled with an even greater peace and a sense of your body in perfect health.”

My other favorite moment of the week happened at the gym when I ran into my dear friend, Nicolette Grieco. As we talked about today’s procedure, she encouraged me to call if I needed any help this weekend. I casually replied, “Oh, I’ll be fine. I’m actually planning to see Heather Horton at Underground Wonder Bar on Saturday night.”

Nikki, looking somewhat concerned, said, “I think you should stay in.”

Not able to suppress my smirk, I replied, “Thanks, Mom.”

Doing my best to reassure her, I continued, “Actually, my understanding is that this would be outpatient except that it’s chest surgery.”

Nikki looked at my incredulously and exclaimed: “Say it again! CHEST. SURGERY.”

I wish I had her reaction on video. I’m still laughing.

August 23, 2015

Yesterday was a great day that kept getting better. First, Dr. DeCamp, one of the thoracic surgeons, came by early to share Dr. Bharat’s impression that, based on what they could see, the activity in my chest is most likely the creation of scar tissue rather than an active tumor. Confirmation from the pathology tests should come this week.

Shortly before 9am, another doctor from the team recruited my nurse, Katie, to help him remove the two-foot long rubber tube they had inserted near my right lung during the robotic surgery. I wish I were exaggerating about the length or the fact that it was about the width of a pinky finger. But I’m not. I’m just glad they left it in less than a day because it caused sharp, stabbing pains every time I moved. To some degree it still does and it’s been out for almost 24 hours.

The highlight of the morning happened around 9:20am when the nurse walked in with a manila envelope and said, “You’ve got mail.”

Curious to see what it would be, I opened envelope and found a home-made card sent over by the nurses and staff from the 15th Floor of Prentice (I was across the street in Northwestern’s Galter Pavilion on the 11th Floor surgical unit at the time). I was so touched that Annette (A-Nut Pitoń) and the team would take time to make and send a card. Fortunately, it didn’t hurt to smile because I found myself doing a lot of that. Naturally, Prentice was my first stop when they released me less than two hours later.

For those of you who asked, I did make it to the Heather Horton show last night at Underground Wonder Bar. I caught the first set before heading to the Greyhound station to pick up a few couchsurfers from Ukraine.

Feeling incredibly blessed and grateful today. And slightly sore.

Surprise card - chest surgery

August 26, 2015

As of 6:30pm this evening, the Unexpected Journey has come to an end. No tumors. I am cured. The blessings, however, continue. When I look back on this, I will remember the unimaginable love, the laughter, the countless blessings, and the incredible personal growth. I will not remember a battle because there was no battle. I did what I set out to do. I walked with it. Learned from it. And became a better, healthier, and far happier person. Tears of joy for all of you who walked with me and never left my side. I have never experienced this kind of love. Ever. This was truly a gift.

August 31, 2015

Port

This little device may not look like much, but it’s been an important part of the journey.

The Interventional Radiologists at Northwestern surgically implanted this port in my chest on March 11, 2015.

It might seem odd to be grateful for a fancy plastic and rubber catheter that looked and felt strange bulging under the skin on the right side of my chest. But I am. This port’s nine inch path from the middle of my chest, arching up and over the collar bone, into my internal jugular vein, and down into my heart provided some deeply felt peace of mind.

Part of the value of the port was not having to be stuck with a needle at least twice a week for seven months every time the nurses had to draw blood or set up an IV. But the real benefit came from the protection it provided from the chemo.

I often think the best salesperson of all time was the doctor who convinced the first patient to try chemo. Had I been the test case–and thank God I wasn’t–my side of the conversation would have sounded like this:

“So, let me get this straight. You want to inject me with a chemical cocktail so caustic that I’ll get instant third degree burns if any of it leaks outside the veins? How do you know it won’t burn the inside of the veins as well?”

Wow.

It would have taken a seriously compelling explanation for me to have said, “Let’s go for it” rather than “Are you on crack?”

The truth is, chemo is perfectly safe when it stays inside the veins. But that doesn’t always happen. Veins can burst without warning.

That is exactly what happened to one of the veins in my right arm during a CT scan. Since the technicians weren’t certified to use my port, they started a regular IV in my arm to inject the contrast solution. Shortly after the test began, I was lying on my back under the scanner when I knew something had gone wrong. I suddenly felt the sensation of fluid dripping down my arm. It wasn’t until later that I found out the dripping sensation was on the inside of my arm, not the outside.

What a bizarre feeling.

That’s why my arm swelled up to twice its normal size in a matter of seconds. Had that been chemo instead of contrast, swelling would have been the least of my problems. To be fair, an accident like this with chemo is highly unlikely because what is considered a rapid infusion of Rituxan–the only chemo drug I received as a rapid infusion rather than a slow drip–still takes an hour and a half. A rapid injection of contrast, on the other hand, creates a much higher level of pressure because it happens in a matter of seconds.

In any case, for the past seven months this beautiful little port minimized the likelihood of a horrifying chemo leak. That is why my deepest appreciation goes out to the inventor. Over the past 174 days, this wonderful invention withstood 545.5 hours of chemo, over 325 line flushes (to make sure the port was working properly), and countless blood draws.

None of this makes my situation particularly special. Many people have ports a lot longer than six months. Once again, I am one of the lucky ones. As I walked into the Interventional Radiology Department on the 4th floor of Northwestern this afternoon, I was struck by how quickly the time has passed. It seems like only a few short weeks ago I was there to have the port implanted.

Today, I had this peace-of-mind providing technological marvel removed. Tomorrow, doctors will remove the stitches from last week’s robotic surgery. Next week will be one of the first weeks since mid-February that doesn’t require a visit to Northwestern Memorial.

Life returns to normal. But it will never be the same. And that is a spectacularly beautiful thing.

© Rob Sullivan Productions, Inc.

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