Fortitude and Acceptance

Fortitude and Acceptance

Name: John B.
Type of Cancer: RELA Ependymoma
Diagnosed: 2022
By: John B.
— Categories: Adult   Brain  

My name is John and I am 57 years old.  I previously worked for a decade with Alzheimer's patients as well as doing freelance work as a commercial artist.  For the past four years I have also been a contributing writer under the pen name "Jack Byron" for the popular Chicken Soup for the Soul line of books, but have been retired due to ill health for quite a while.

My cancer journey began several years back, although I certainly had no idea at the time what was happening---I knew something was wrong, but I wasn't certain exactly what.  I had strange symptoms, particularly with unexplained anxiety that seemed to manifest itself depending on my visual perspective; large open intersections that I encountered when driving were a particular source of anxiety.

In 2022 the symptoms took on a more specific character, as in the spring of that year my right arm went numb.  Visits to my primary care physician did not raise any alarms, although I questioned him at the time about the possibility of my having multiple sclerosis.  He assured me that MS was very unlikely, but referred me to an orthopedist, through which I received physical therapy, with some slight improvement.

In August I was hospitalized with what proved to be atrial fibrillation and put on medication to control it.  This actually was an important event in my brain cancer journey, as it led to the hospitalization where my brain lesion was first discovered.

In November of 2022 I was sitting at my desk when I had a very strange sensation---the best way I can describe it is that it was the feeling of an elevator dropping, that sense of freefall, but it was completely confined to my head.  Knowing that AFib carries an increased risk of stroke, I immediately called 911.

That weekend, just before Thanksgiving, I was hospitalized and had my first of a series of MRIs that have come to dominate my life.  The doctor who was to become my primary care physician walked into my hospital room and told me that I needed university-level care.

Through this physician I have been able to receive my treatment at Loma Linda University medical center, a world-renowned facility.  There I have benefited from having an amazing care team with my neuro-oncologist, neurosurgeon, neuro-radiologist, and countless others.

For a long time it was considered likely that I had tumefactive multiple sclerosis, a condition that often is mistaken for a brain tumor, but a consultation with Loma Linda's MS specialist dismissed that.  In fact, he pointedly said that he thought I had a glioma.  When my MRI from June of 2023 revealed that the mass was growing, surgery became imperative.

I had my craniotomy with resection on August 10th, 2023.  A biopsy was only done after my gross total resection, with pathology confirming a diagnosis of supratentorial ependymoma, grade 2.  My entire care team has been very honest about the fact that they were stunned by my diagnosis---no one ever expected this.

The rarity of the particulars of my case are being included in a case study.  It is likely that my ependymoma is RELA-fusion positive, since most supratentorial ependymomas are, which portends a more aggressive course.  After only four months post-surgery the tumor is already growing back.

My next step will be proton therapy, and I am fortunate to be a patient at Loma Linda, as it is one of only two facilities in California offering this treatment option.  This actually is all very new to me, and I feel as though I have lived a lifetime since my cancer diagnosis.  It is hard for me to believe that it has only been a few months since I had my surgery.

How have things been for me physically?  Well, it has been far from anything that I have expected.  For one thing, the surgery itself was not so bad, although I wasn't afraid going in and had prepared myself for the worst.  My tumor is in a very critical area, right in front of the corticospinal tract, very deep in the brain.

Given this critical location, I was informed that I could be paralyzed or unable to speak after surgery.  In fact I do have speech difficulties from time to time, especially if I am tired.  My speech was definitely hesitant, with difficulty finding words, right after surgery, but it has improved.

My right arm still has problems with numbness and weakness, but I still can use it.  And I walk with a cane for balance when I am outside of my home.  Beyond that, the most notable thing, at least for me, is the challenge of organizing my thoughts.  I have to be very deliberate, and my typing nowadays is characterized by a constant need for editing, to correct the mistakes that I constantly make.

With all of this, however, I have to say that this is actually a pretty interesting journey.  I am learning a great deal about brain cancer, and I find value in that.  After all, it isn't everyone who has this experience, so I am going to get the most out of it.

The only difficult thing that I have encountered throughout this is the reactions of others.  Most people, including family members, definitely do *not* want to talk about it.  In fact, it is surprising to find that so many people feel uncomfortable with talking to me at all.  And some people have reacted with anger.

I have to be honest and say that this has made my experience difficult---it feels rather lonely to be written off, as it were, in such a fashion, let alone to face anger directed at me over something that I have no control over.  But I cannot claim a prerogative on anyone's time or behavior, and I remind myself that love most often means loving people as they are, especially when they are not at their best.

The most important thing that I have gleaned so far is the fact that, despite what others might think, I am not at all a strong person.  I will even say that I do not know the first thing about being strong...but I have definitely learned a thing or two about being weak.

And I have learned about accepting the entire situation.  The goal for my care team is managing this cancer, and giving me as much time as possible.  They have been very upfront that this is something that will not be cured, and that it will always return---it is, as I have stated above, already returning.

But I can accept this.  I truly believe that the only valid miracle most of us are ever likely to encounter in life is the fortitude to face and accept the inevitable.  And this is one miracle I can claim for myself, with gratitude and humility...I truly am thankful that I was the one to get this. 

I think of so many others in my family, and how devastating this would be for them.  I, however, can appreciate it and laugh about it.  My best friend, herself a cancer survivor, is someone who helps me share the humor of the entire situation....we cheerfully recount to others how I “caught” the cancer from her.

And I swear that I am going to ask my insurance to provide me with a cancer wig, despite the fact that I have been bald since long before cancer was ever on my horizon.  I suppose that I should add humor as a second miracle to claim and appreciate.  :)

And so that is my story.  It isn't everyone who gets a heads-up about their approaching "expiration date" and this gives me a chance to appreciate everything all the more.  More than anything else, I hope that the case study, which will be published after my death, might provide help for someone else in the future.

I think that alone makes everything worth it.

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