So, this is how it is for me: No matter how much I try to accept my fate, I still struggle with these facts: I have cancer/multiple myeloma (MM); I am living with an active cancer that cannot be cured; MM can be a terminal disease situation; the best that I can hope for is to achieve a manageable level of remission without cure.
One would believe that after eight and a half years of living with MM it might be different than what I just described. For me, it is not.
At times, it is a struggle between my ears to comprehend and accept the above facts. At times, it is a struggle physically to willingly take on chemotherapy and various drug protocols for the purpose of extending my journey knowing that it makes me feel lousy (foggy, headachy, nauseous, fatigued). There is no sugar-coating many of the physical side effects.
At times it is a struggle to maintain confidence in the decisions I make for the sake of capturing additional days/months/years especially when treatment protocols, while improving, are still none the less limited in effectiveness. The struggle leads to questions about what it means to die and what that will look like when the time arrives.
It is very easy to remember but difficult to live with the reality that there are no guarantees for a “betterment” of my circumstance from any of the treatment protocols that I may undertake in trying to extend my life.
A crisis of confidence can arrive at my doorstep without much prompting. The twins’ doom and gloom can always be found nearby, waiting for a chance to join the proceedings. Thoughts and ideas that try to address my life’s value are routinely reviewed or given to contemplation. I put into play questions and uncertainties about my life’s worth and the efforts I take in trying to stay alive. Am I placing too much value on length versus quality?
Reading what I just wrote, you would/could get the distinct impression that my life is not so good and full of angst. Maybe you could even make a case for it being some type of living hell whatever hell looks like. Living with MM/cancer is/can be difficult I believe you got the picture. And yet, here is the “kicker” - I sure do like living.
So, what am I to do? What is anyone to do?
I started to compose this piece at about 4:00 AM because sometimes sleep is hard to find especially if a thought or inspiration worms its way into my head as it did this morning.
Yes, I got worry. Yes, I got struggle. Yes, it is difficult. However, this morning it dawned again on me that the worry I got is not so much about no sleep or lack of inspiration or any immediate and tangible circumstance. No, my worry is usually not about today but almost always about the future. A future that could be as short as an inadvertent walk-in front of a moving car today because I was not paying attention.
At about 7:00 AM I went for a bike ride before the sun got too far up off the horizon. Boy was I grateful for being able to still ride my bike. I really focused on my legs as they moved the peddles up and down and up and down. I changed gears accordingly and for the most part stayed focused on what was right ahead of me. Traffic was light however it never affords me the luxury of daydreaming. I must pay attention. Riding my bike was/is an excellent example of the need, not the desire, to stay in the now.
And so, once again, when the student is ready the teacher will appear. I guess I was ready at 7:00 am.
I do not know what will come next. I do not know what it will look like. I do not know how hard or painful it will be. I do not know if what comes next will be successful at achieving remission. I do not know how long I will be alive. I do not know when I will die or how I will die for that matter. Basically, I know very little. Yet, I sure can worry and struggle with that which I know very little about.
On Monday of this coming week, I will have a consultation with my oncologist about my situation and about how we proceed forward. We will be having a get-together with the primary focus on what is to come, about tomorrow, about the future. Some time will be given to the present, but the future will be our focus.
Staying in the now and having discussions on the future - all at the same time! Well, I just do not know if I can manage or how I manage both “now” and “then” at the same time. But I will adjust and move forward.
That is just how it is for me living with MM/cancer.
P.S. If you need a chuckle or maybe even a laugh please check out this month’s “song of the month”; priceless