Sep 13, 2017 Latest post:
Feb 19, 2018
I was diagnosed with acute leukemia on Saturday evening, September 2, 2017 at approximately 7:30pm. This is the story of my journey.
It's hard to believe all that has happened to me over the span of a few short weeks. Incredulous really! I was supposed to have been with my partner of 25 years meeting friends in Amsterdam for a few days before boarding a cruise ship for a 10 day cruise around the Iberian Peninsula ending with a few nights in Barcelona, then culminating with a few days of Mediterranean beach time in Sitges thrown in to cap it all off. Instead, I found myself in the middle of a flurry of activity at two hospitals leading up to an acute leukemia diagnosis (AML) and beginning chemotherapy treatment almost immediately. People say that your life can change in an instant. It’s true. It can.
What I've tried to capture here is the day-to-day unfolding of events, mostly in a matter-of-fact chronological order, with a little bit of my thoughts and feelings thrown in. I'm a private person, generally quiet, low-key, chill, self-described introvert (though many would take exception to that characterization). I don't like having the spotlight focused on me nor being the center of attention; it is not natural for me to be writing about myself in a semi-public forum. But at the request and relentless urging of several loved ones (you know who you are!), I agreed that if in fact we were dealing with a diagnosis of acute leukemia (translation: light at the end of a long tunnel with a likely series of protracted hospital stays), then I would agree to using a website such as this to chronical the journey and to provide status updates. So here we are. And so it is with some reluctance that I move forward with this forum. But once I’m in, I’m all in!
I'm not sure how I found myself on this path but somehow I've ended up a reluctant passenger on a train that's already left the station. Destination: unknown. I never bought a ticket, or perhaps I did. I find myself wondering not so much why I'm here, but how I ended up on this particular journey. My life has been lived mostly in the fast lane, though I've had my blinker on for a while now, trying to merge over into a slower lane. But I couldn’t get in. I longed for a simpler, quieter, slower existence; one where I was making a complete stop to smell the roses, not just getting a good whiff as I whizzed by. But when you're spinning around in a whirlpool with little to hold on to, you end up using all of your energy just to keep your head above water; it's hard to pull away and to slow down the vortex. This will force me to.
Oprah has famously said that life always whispers to you first, but if you ignore the whisper, sooner or later you'll get a scream. This is my scream! It's hard to hear the whisper when there is too much “noise” in your life. For me, the best time to listen and to hear and to process and to understand is in the still and quiet moments, when the noise is muffled the most (currently the sun-filled, peaceful mornings when I bath in the glorious sunlight streaming through my hospital window). My lesson is to not let the noise get so loud it keeps me from hearing the whisper, because eventually that whisper will turn into this scream. My heart believes my failure to do that is at least partially the reason I ended up on this train. I was listening but not hearing, or perhaps the other way around: hearing but not listening. I've known or maybe just felt for a while now that something wasn't quite right, and not just physically. But what was it? I had the kind of life many people would envy: bedrock relationship with my partner, a large caring loving family, many real true friends (the kind that would help you bury the body and never mention it again!), semi-retired with plenty of leisure time, 3 homes, extensive travel and exotic vacations. The list goes on. By almost any yardstick, I have been truly truly blessed. I had a deep appreciation for and a keen awareness of the charmed life I had been living. But I didn’t take it for granted; I know fully well what it’s like to live on the other end of the economic spectrum; I’ve lived through some extremely tough times under difficult circumstances and have had some very, very lean years (both economically and emotionally). And so I was full of genuine gratitude and appreciation and I didn’t take any of it for granted, except for perhaps my health. And maybe that was the crux of it. Yet, everyone seemed to think my life was perfect except for me. I had this sense that something was missing, that there was something more. Was I having a midlife crisis (albeit a late one)? A spiritual drought? Was I focused on the right things? Was I living a truly authentic life? Was I lacking purpose? direction? goals? There had been so much "noise" in my life that I couldn't hear what the whisper was saying — and so it became a scream. I’m still not sure exactly what it all means, but I’ll figure it out. I have some ideas. I’ll need to do some soul searching. And now I will have the time! Funny how the universe is perfect that way.
The doctors believe I've had chronic leukemia for a long time - for "months maybe years". The effects were masked by my physical fitness and prior good health plus all of the "noise". It eventually ballooned into full blown acute leukemia that was impossible to ignore. I know that after we get past this detour, my life will be sweeter and richer, more satisfying and fulfilling and more authentic. I will be stronger and wiser with more character and resilience. My life will be filled with more gratitude and more awareness and appreciation, much more than before. I will be more spiritual. And I won't take my health for granted. I will be a better person.
Today, September 21st, marks the beginning of my 4th week in the hospital. I honestly have been feeling very normal (as normal as one can feel in the hospital!). I'm confined to my room though occasionally with hallway privileges IF I wear a mask, but then only to the end of the hall and not past the double doors! Apparently it's not safe for me out there anymore. My world has shrunk considerably, but grown in other ways. I have a new appreciation for the morning and the glorious sunshine that streams through my hospital window. It energizes me. I get why it's the lifeblood of life on earth. On many mornings it has been my lifeblood as well. I'm on this train not exactly sure where it is headed, but I'm calm and confident knowing that wherever it is taking me, I'll be prepared when it arrives. I am feeling completely at peace.
I told my team of doctors a while back that I wanted to be the poster child for how to beat this disease. Tell me what to do and I will do it. Tell me what not to do and I won't. I will be the perfect student!!! I think they appreciated hearing that. We revisited that topic again this morning, and my doctor told me that I’m getting straight “A’s”. They know I'm 100% on board and committed, as I know they are.
I have so so so many people to thank for helping me get to this point. First and foremost, my awesome partner whom we all know and love. Friends in the medical field who have helped me navigate through this, consulting with me, advising me, meeting with my doctors, helping me line up a second (or third) opinion, reassuring me of the decisions we've made so far. Then there is the incredible team of doctors and nurses that has been assembled, illuminating the path forward and leading me through this; I have access to the best health care available. And more friends and more family catering to my every need (and lots of wants!) than I feel I'm deserving of. And then there's the unbelievably loud cacophony of love and support and prayers and positive healing energy (and even some cosmic cuddling) coming in from everywhere (and even some unexpected places). My cup runneth over. Truly! My cup runneth over. I'm feeling more blessed, more loved, more energized, buoyed and supported than I ever have. And perhaps that's the point. Calm and confident, I know that I'm in the right place on the right path surrounded by the right people. Whatever you are all doing, it's working. I feel the love! I'm in a good place and I thank you all for bringing it.
I'm in the bone marrow/stem cell transplant ward of the hospital. There are very sick people here with fragile, compromised, and in some cases nonexistent immune systems. Special rules apply:
1) NO FRESH FLOWERS OR LIVE PLANTS
2) NO OUTSIDE FRESH FRUITS OR VEGETABLES
3) NO CHILDREN UNDER AGE 16
4) NO VISITORS ALLOWED WHO AREN’T FEELING WELL OR WHO HAVE A COLD OR THINK THEY’RE GETTING A COLD
5) YOU MUST WASH OR SANITIZE YOUR HANDS BEFORE ENTERING AND AFTER EXITING MY ROOM; THERE IS A HAND SANITZER FOR THIS PURPOSE JUST OUTSIDE MY DOOR ON THE RIGHT.