Special Lustgarten Foundation Edition - Surviving Cancer and Embracing Life: My Personal Journey by Joel R. Evans - HTML preview

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Lots Has Happened Since 2018

These last two years have been quite eventful. And in this chapter, let’s highlight where my personal journey has taken me. We’ll attempt to do this in chronological order. And several of my blog posts help me in my recollections.

The summer 2018 trip when I got really sick. Shortly after this book was originally published, Linda and I embarked on a long-scheduled vacation.

We went on a cruise that we planned for months. The travel and itinerary seemed in my capability range.

Because of my health issues, we prepared carefully and waited until close to the date of our trip to book everything. And we always bought travel insurance.

The first few days of this trip were fine; and we had a great time. I even tried — unsuccessfully — to take selfies while sightseeing. I may have a lot of skills, but taking pictures with my phone is not one of them.

There was nothing funny about the rest of our trip. On the third night of the cruise, I couldn’t stop shivering. The ship’s doctor decided to send me ashore. We were docked in Waterford, Ireland. The hospital I went to by ambulance was quite good.

I was examined right away and admitted to the ICU. It turns that I had contracted double pneumonia with sepsis. In addition, I had a fever, low blood pressure, and a low oxygen level. Pretty scary stuff. I was out of it, so I didn’t really know what was going on.

However, Linda was petrified (again).

I was in the ICU for 6 days. Then, I spent another 4.5 days in a regular hospital room. Thankfully, the excellent doctors were able to mostly “fix what ailed me.” When I was able, we returned home. Long trip— Dublin, Ireland to JFK, New York. We decided to fly first class so I could lay down.

My doctors at home told me it would take up to six weeks—or longer--to fully get over this illness. It actually took three months. They also ordered me not to fly for another 6 months or so. Nonetheless, I felt much better over time, and looked forward to every day as it came.

What’s my moral of the story? The same one I’ve been preaching to myself for years: Live life every day. We really don’t know what is around the corner. We can only play the hand we are dealt, and make  the best of it. Yes, this was not my favorite trip by any means. But Linda and I did have a few good days at the beginning. And we have a LOT of memories to look back on and stories to tell. I LOVE YOU LINDA!!

Of course, we had insurance companies to battle with over my medical care, our return home, etc. That is what makes life so “interesting.”

My Last Full-Time Teaching Semester: Despite still being short of breath due to my summer vacation “odyssey,” I really looked forward to teaching in fall 2018. And there were both undergraduate and graduate classes to teach. Gratefully, the semester went really well. Although, I was a little melancholy.

Interviews About This Book. I did several interviews to publicize the book. I was helped in that endeavor by a one-time student of mine who owned her own public relations agency. Thank you Lori A., founder of The PR Freelancer, for generously offering your agency’s services to me.

This resulted in my undertaking a number of radio interviews. These involved stations around the whole country. And they were completed during December 2018 and January 2019.

I enjoyed participating in the publicity drive. The interviews were actually fun. And it distracted from the pain in my knee—since radio interviews required no movement. LOL.

Retirement Begins. That time was exhilarating as well as anxiety-provoking. After all, I had been such a hard charger my entire adult life.

Interestingly, retirement has been perfect for me. I still could teach one course a year, socialize more with friends, engage further in volunteer work, travel more, stay active with my blogs, and do so many other things. What feels really nice is having more control over what I do on any given day. That is liberating. And less stressful.

Three Wonderful Vacations. After the disastrous cruise in 2018, Linda and I were determined that 2019 would be mean better traveling for us. In fact, we went on three trips—all in our hemisphere. We visited Antigua, Bermuda, and Costa Rica. Winter, spring, and summer. We had a terrific time on these trips. On our Bermuda vacation, we especially enjoyed meeting up with our British friends Sue and John from the UK.

Volunteering at United Cerebral Palsy. After exploring possibilities for a while, I found a great fit with UCP in Suffolk, New York. Here’s how the situation unfolded, as discussed at my blog:

It was an unexpectedly long and difficult journey to volunteering. For unclear reasons, I was unable to hook up with various cancer organizations and other social services groups.
Rather than give up, I broadened my search. It must have been my destiny all along to be a volunteer with United Cerebral Palsy. Since last month [June 2019], I have been a volunteer with the day programs at the Hauppauge, NY facility. I am working with disabled individuals who are the sweetest people. They treat me like a long- lost friend—and like family. In addition, the staff is phenomenal and really caring.
I am involved with self-advocacy, socialization, human rights, job skills, and more. Everyone keeps thanking me. Yet, it is really I who am thankful because I get to give back in such a meaningful way. I am fulfilling my life’s mission related my to fortunate survival from pancreatic cancer. To me, this is so inspirational and motivational.

Because of my need for knee surgery, followed by quarantining due to COVID-19, I have missed a lot of in-person time at UCP in Hauppauge during 2020.

Fortunately, for the last few months, we have engaged in several weekly ZOOM meetings. I am even learning how to draw. I still miss the in-person meetings. But as a high-risk person, I need to be smart, something not always simple for me.

Deciding to Finally Have Knee Replacement Surgery. For several years, both of my knees bothered me. The knees were quite arthritic. On my left knee (the worse one), I had undergone two arthroscopic surgeries, spaced over time. Starting in early 2019, I got regular injections in the left knee every few months. They worked for a short while.

When we got to October 2019, I had a feeling that knee replacement surgery was around the corner. I was always in pain and needed a cane to hobble around during my class at Hofstra. I had been unable to go on even short walks or to the gym for months.

Despite my fighting it, I was ready psychologically for knee replacement surgery. The decision was easy.

Yet, I dreaded another surgery and hospital stay. I realized that the fear was mostly unfounded. At the same time, I thought that enough was enough with regard to discomfort and lack of mobility. Let’s go.

For the knee replacement surgery, there was no question in my mind that it would be done at the Hospital for Special Surgery in New York City [rated number one for orthopedics according to several rankings]. I was able to get a consultation on Long Island, where HSS had a branch office.

My October visit was with Dr. Fred Cushner, who is highly-rated himself. After looking at a set of X-rays, it was obvious that surgery was a must. Based on our combined agreement, surgery was set for January 3, 2020. I instantly felt comfortable with Dr. Cushner.

Because, one-to-three nights of hospitalization would be required, we booked a hotel near the hospital— beginning the  night before surgery.  Once more, Linda was put through the wringer. Since there was a lot of highway construction on the way from our house to the hotel, it took a 2.5 hour car trip to drive less than 50 miles.

Due to my diabetes, surgery was scheduled for early in the morning. Of course, there came another uh-oh.

Without breakfast or even juice allowed before the surgery, my blood sugar was too low to be treated as planned. At that point, we waited to see if my count would rise. Two hours later, they were ready to postpone the surgery for a day unless my count was OK. Somehow, it finally was. And the surgical team raced me over to the OR to get going.

The surgery itself went off without a hitch. I was in a nice room that afternoon. And I went a few paces with a walker that night. Just as Dr. Cushner said I would. The staff was excellent.

I was in the hospital for three nights. There was a stair riser in the hospital that I practiced with until I was pretty proficient. They wanted to be absolutely sure I could get up and down the stairs in our house before discharging me.

Once home, I opted for tele-PT. Yes, there was a physical therapist who visited me via ZOOM. This experience turned out much better than most of you might imagine.

Just a couple of days after returning home, Linda and I noticed a few large blisters on the inside of my left leg. We E-mailed photos to Dr. Cushner, and he asked us to come into his Manhattan office the next day. So, we made the 2.5 hour trip each way. Dr. Cushner was/is the most punctual doctor I have ever encountered. I had barely sat down in the waiting room, when called into his office. Dr. C. lanced the blisters and noted that they were the worst he had seen. [Of course they were.]

The next week, regular out-patient PT began. At first, Linda had to drive me. While my mobility was better than before surgery, the pain was intense when moving around. This continued for several months.

In a good way, PT was intense. Lots of stretches, exercises on low-impact equipment that worked my legs, and frequent icing. It was amazing how much I improved during the period I went to PT. The last few weeks, I could drive myself.

February 12, 2020—a very big date. Amazingly, on this day, we celebrated the five-year anniversary of my Whipple surgery. Saying that I was emotional would be an understatement.

Once again, I recognized how incredibly lucky that I was. There was happiness for myself, as well as profound sadness for those victims of pancreatic cancer who did not survive five years (and for their loved ones). Even now, in 2020, the median five-year rate of survival for those diagnosed with pancreatic cancer is only around eight percent.

We celebrated with a great family dinner at one of our favorite restaurants. Little did we know about what was coming next. Indeed the full impact of the COVID-19 pandemic was ahead, with devastating effects around the globe as well as in the New York region. And then spreading to other areas of the United States.

The COVID-19 pandemic hits us. Just as I was about to head into my last week of out-patient physical therapy, it seemed as if every facility was in the process of shutting down. Retailers. Schools. UCP in Hauppauge. And much more. Self-quarantining became the norm. For Linda and me, it became a must. And for me, it still remains a must. Being smart is smart. As an over-70, diabetic cancer survivor, I worry about any close personal contact.

What have we done over the last many months? Fairly or not, Linda has had