Cancer is a Pain (Part One)

“Pain”, according to Merriam-Webster: “usually localized physical suffering associated with bodily disorder (such as a disease or an injury)” …… Usually. Physical suffering. I would add in mental suffering.

I have talked a lot about how I have found an outlet as well as a source of strength for my mental skirmishes with cancer. Joining - and participating - in a support group has helped me tremendously. I will be forever grateful for the compassion of people living with cancer. Their unselfish ability to be so completely vulnerable around complete strangers, their willingness to be open and honest with their inner demons and fears, and to be able to put this terrifying experience into words. A beauty of cancer has been my introduction to these fabulous people.

For those of us keeping track: The American Cancer Society says the following are possible side effects of chemotherapy: fatigue (and we are not talking “being tired”), hair loss, easy bruising and bleeding, infection, anemia (low red blood cell counts), nausea and vomiting, appetite changes, constipation, diarrhea, mouth, tongue, and throat problems such as sores and pain with swallowing, nerve and muscle problems such as numbness, tingling, and pain, skin and nail changes such as dry skin and color change, urine and bladder changes and kidney problems, weight changes, chemo brain, which can affect concentration and focus, mood changes, changes in libido and sexual function, fertility problems.

Geez, you would have to have some tragic happen to you like CANCER in order to even contemplate taking a “medication” with that many side effects. Right? Well, welcome to the world of us living with cancer…..

For many of us diagnosed with cancer, the drugs your medical team is telling you to put into your body to hopefully save your life come with such ugly side effects during treatment and possibly for the reminder of your life. These includes developing secondary cancers and or death. Sounds scary doesn’t it? For some it’s just too scary and they look for alternative routes of care. It’s a truly individual choice. I respect others who have chosen another pathway against cancer. I cheer modern medicine for searching for alternative methods to rid the body of cancer cells. I yearn for them to land on an effective course of treatment that does not include large doses of poison. It is why I am participating in a clinical trial. I have hope.

And the fun isn’t just during treatment. LiveStrong.com states late effects of chemotherapy (long after treatment has concluded) include: fatigue, difficulty with focused thinking (sometimes called chemo brain), early menopause, heart problems, reduced lung capacity, kidney and urinary problems, nerve problems such as numbness and tingling, bone and joint problems, muscle weakness, and of course the dreaded secondary cancers. 

I experienced a good number of the “during chemo” side effects and I’ve talked about them here while I was in treatment. The fatigue was and continues to be tremendous. It’s not anything like being tired. Your whole self. Your body, your mind, your spirit is fatigued. I have a new appreciation for the word fatigue. And I still experience a good deal of issues from neuropathy in my fingers.

Luckily, modern medicine has medicine to counteract most of the side effects of chemotherapy. The dreaded nausea, for example, can now be mostly controlled to a great degree now a days with a bucket full of meds. I needed a journal and a wife in order to keep up with my daily medicine regimen during chemo.

But what happens to you "after chemo"? After the prescriptions have run their course, after the weekly blood draws and doctor appointments? After the hovering and comforting nurses aren’t there for you 24/7 via phone? What can pop up years out of treatment as a result of chemotherapy - physically as well as mentally? Clearly there is a whole host of side effects post treatment that can crop up anytime during the remainder of your life. Please see above. Years from now – and I pray I get there – I may have heart issues, for example, that hopefully, someone will be smart enough to tie back to my previous chemotherapy when determining a course of treatment. 

I would add one more side effect from "after chemotherapy" – Pain - physical pain.

I explore my pain and how I cope in Part Two…………

Huh?

Liz and I went on our first real vacation this fall since my diagnosis. We had wanted to explore Italy for years – since our honeymoon jump off point in Rome in 2015. We spent two wonderful weeks roaming throughout the country. From the southern coastline of Sorrento to the northern coastline of Cinque Terre, to the breathtaking waterways of Venice, it was truly a trip of a lifetime.

I was a bit apprehensive to leave the country for two weeks – the farthest I’d traveled since being diagnosed with cancer, and I felt good the entire time out of the country. We hiked the northern coastline of Italy, swam in the Mediterranean, Sea, and lost ourselves in the alleyways and streets of Venice. I forgot I had cancer for a few weeks and enjoyed my wife and the world.

Upon our return, my ears seemed a bit messed up. I shrugged off the fullness, accompanied by ringing in my right ear to the long flight across the Atlantic. Surely, in a few days, it would clear itself – I said. Weeks of this, however, began to weigh on my mental state. It was difficult to stay in conversations at work as well as at home. The constant ringing and comfortableness in my ear found me withdrawing from people. It was clear to me my ear was not getting better with time and I needed to see a doctor. 

An ear examination coupled with a series of extensive hearing tests confirmed that indeed something was a miss with my ear. While I could hear the middle register of sound – the register that includes voices – I had lost the ability to hear the lower and the upper registers of sound in my right ear.  The diagnosis was not straight forward however.

The ENT doctor diagnosed that my hearing loss was due to a possible infection that entered my middle ear. Maybe due to flying, maybe not related at all. The treatment would be a course of steroids. But treatment needed to begin immediately.  If treatment was started within the first 30 days of trouble, according to my doctor, my odds of having hearing return was around 60%. And that was the BEST odds he could give me. My appointment was on day 20. I would need to begin the steroid treatment right way if I stood any chance of regaining my hearing.

But because I’m far from a “normal” patient these days, I needed to clear the treatment plan with my oncologist. I was fearful the course of steroids would interfere with my clinical trial. For a brief but painful moment, I had to think about the real possibility of abandoning my chance of getting my hearing back in order to stay in the clinical trial that may very well be keeping me alive. It was not a comfortable space to be in. Thankfully, my clinical trial team was quick to respond the steroid treatment would be within the clinical trial guidelines and I could commence treatment and stay in the trial.

Several weeks of steroids brought the return of my hearing but did not rid the ringing in my right ear. As it turned out, I discovered my oncologist would have had to stop my trial had my hearing not return to normal levels.  Apparently, there was more conversations had than I was aware of among my clinical trial team. I discovered at my recent trial appointment that had my hearing not return to normal levels, I would be removed from the trial for fear it was the trial itself (the vaccine) that caused my hearing loss.  

Funny how cancer allows one to willingly trade important pieces of your health as long as you stay alive. Yes, I would have – I believe – forgone treatment for my hearing and chanced it not return in order to remain in a double-blind clinical trial for greater fear it is the trial that may be keeping me alive. Basically, living without hearing is worth living. We living with cancer, make those "trades" more often than you know because we get that "living" is worth it all. A beautiful gift of cancer. Gratefully, I didn’t have to make a choice. My hearing has since returned to normal; I still have ringing in my ear that may never go away; I remain in my clinical trial. I’m alive.

Here's to My 56th Trip Around the Sun

Today is my 56^th birthday. In few days, I will also be three years into my cancer diagnosis. These dates will be forever linked.  I will be forever linked to cancer. It is my hope I’m around to “celebrate” that linkage for years to come. I try to measure my worth on this planet by, among other things, the quality of my friends and the quantity of positive karma I share. Good things do happen to good people. This 56 year old living with cancer is a blessed human with some pretty stellar family and friends who definitively feels the good karma today. Thank you.

Happy Birthday to me.

Be well.
jjb