The Reality of Chronic Lymphocytic Leukaemia – Guest Post by Jeff

Jeff’s guest post is the 17th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Jeff!

My name, which is nothing remarkable, is Jeff Neurman. I recently turned 46, a birthday that has no particular significance other than to serve as an unwelcome reminder that there is a good bet that, at best, I am at the half-way point in my life, and that would be without my illness, which brings me to why I am writing this today.

My Story

Six years ago, as an unwelcome 40th birthday present to myself, I decided that I should have a physical. I was not experiencing any particular problems of note, but it had been a couple of years since my last exam and any anniversary of one’s birth that marks the completion of a full decade of living seems like a reasonable time to have oneself checked out. Rather nonchalantly, I went in for my exam, naively thinking that the worst I was likely to come away with was a recommendation to cut down on calories and high cholesterol foods, as well as drinking – i.e., the things that largely make life worth enduring. Of course, if that is what had actually occurred, I would not be writing this now.

Instead, quite to the contrary, after a series of repeated unsatisfactory blood tests and countless hours of anxiety – which is actually one of my chief areas of expertise – it was determined that I possess a form of incurable leukaemia known as Chronic Lymphocytic Leukaemia or, for those like me who are regrettably on a first-name basis with this disease, CLL.

My diagnosis was confirmed by a handful of oncologists, during which I was told that although CLL is a form of leukaemia, it actually behaves more like a lymphoma. To date, I have no idea what that means, if anything. All I heard was “cancer”. I will leave the proper categorization of it, and the validity of its nomenclature, to the professionals.

Plus, I am blessed to be married to not only a wonderful woman, but one who happens to be a doctor (although not an oncologist, even if I do force her to portray one at home oftentimes). I was also most helpfully informed by yet another oncologist (I have seen quite a few – consider it forum shopping if you like) that this oncologist would “rather have CLL than diabetes”.

I considered that Diabetes involves constant pricking, potential blindness, possible amputations, conceivably dialysis and, of course, sugar-free cookies. So saying CLL was better than that seemed to me to be setting the bar rather low.

After my initial diagnosis, I did what many cancer patients do – W&W. Officially, W&W stands for “watch and wait” (or wait and watch, I can’t recall but you get the idea), but which really means worry and worry some more. There is no end to worry when it comes to cancer. Cancer largely plays by its own rules and although great strides have been made in demystifying it in recent years, it remains largely very poorly understood.

In my case, my cancer was not doing much of anything at first – what oncological types like to refer to as “indolent” but since that term really means lazy I am not sure it fits cancer. Cancer is a lot of negative things, but lazy is not really one of them. Unfortunately. If there was one part of me that I did not mind being described as lazy this would be it. Alas, it was not to be.

About four years into this mess, my “lazy” lymphocytes decided to turn over a new leaf and start working double-time. This is particularly problematic because a doubling of one’s lymphocyte count is one of the signs that major trouble is brewing.

Given that, and the fact that one of the lymph nodes in my throat was becoming so large from its role as a hang-out for these useless white blood cells that I could no longer swallow French fries, which is an essential food group, the doctors decided it was time to treat me. After a bone marrow biopsy, which is a fancy name for taking a sample of marrow, rather inconveniently located inside impenetrable, nonporous bone, by drilling into one’s ass, I began six months of chemotherapy.

I wrote a great deal during my months of chemotherapy about all that I was enduring. I will save that for a future date other than to say that being infused with toxins – and that is what chemotherapy is (and in case there was any uncertainty about that, one only need look at the bag of fluid pumped into the veins which clearly states “Toxic” on it) – is not a particularly pleasant experience.

By the end of it, however, the toxic cocktails had knocked my lymphocyte count back down to a respectable level. One other note about chemotherapy that I think is interesting: Among the seemingly endless side-effects of chemo is that it can cause leukaemia. But I already have leukaemia so that seems unnecessarily redundant to me.

So now I am back to W&W. Currently, I am in remission, but since there is no cure it is anyone’s guess for how long. Hopefully they can find a cure before I need one, but again it is cancer so all bets are off. In the interim, I try – although not very successfully – to put my life back in order.

One of the chief challenges, however, is that for many of us who have endured cancer, whether “cured” or not, it is common to live in unending fear of its return. That makes having any semblance of a normal life near impossible.

The one thing that I have found to help me maintain some degree of sanity (not that I had so much even before cancer) is my sense of humour. The terror that cancer brings with it can be completely and incessantly debilitating. But although I was apparently not blessed with great DNA, I was fortunate to receive a great sense of humour and, more to the point, an ability to find humour in all that is so horrific about having a terminal disease.

By finding humour in much of what is so prevalent in living with a chronic illness – the constant internal struggles, the well-intentioned but impolitic friends and family, the insurance companies, the endless parade of doctors and pushers of “miracle cures” – I have found a path that allows me to go on and appreciate my family and the things that truly matter.

My Favourite Superhero

Thus, until they find a cure or it becomes too late for one, I will continue trying to laugh at that which passes as normal but nonetheless is so frustrating and outrageous and downright annoying about living with cancer.

Fortunately, I also have two wonderful sons (ages nine and six) who I have recently enlightened about the wonders of the Marvel universe. Given all that I am obsessing about each day and worrying how much more time I will have with them, I have found that these movies about marvellous abilities and clear conflicts between good and evil (more or less – Civil War doesn’t really fit that bill) to act as a much needed distraction and a wonderful opportunity to bond with the most important parts of my life.

We still don’t agree on which superhero is the best, but I think I can convince them it might be my favourite, Doctor Strange. The real world is so limiting, and having cancer compels one to spend much time in the metaphysical world anyway. So I think I need a hero from that realm to not only balance my universe but to supply me with more sources of humour. Plus, lack of time is a cancer sufferers worst enemy, and as everyone knows Doctor Strange can control time. I might need him to use the time stone for me some day soon.

Thanks Jeff for sharing your story with my readers and me!

If you would like to keep up to date with Jeff, then you can follow his blog, It’s In My Blood and find him on Twitter!

5 thoughts on “The Reality of Chronic Lymphocytic Leukaemia – Guest Post by Jeff

  1. I salute you Jeff! Superhero you truly are! You inspire me! 🌟✨💫🌟✨💫🌟✨💫

    And Ami! Wow I love your lovely heart. To share the centerstage with Jeff and give him special airtime to share his powerful moving story. Thank you with deepest love and admiration! 💕💕💕💕💕

    Liked by 1 person

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