Diagnosis: Acute Myeloid Leukemia (AML). A Journey

I try to keep my blog entries positive and informative, perhaps at times even avoiding my true thoughts and feelings. This is not one of those posts. This post is all about me and how I am feeling. How George’s leukemia has affected me. Warning: this may seem petty af in the large scope of suffering and life-threatening treatments and illness. It most likely is. Forgive me for this self-indulgent post. I just have to vent.

The night before last, George and I attended a pity party, table for two right here in our living room. We were both short tempered and just fed up with this whole situation. George is sick and tired of feeling fatigued and not able to enjoy his food, even having to force himself to eat at times. He’s sick of spending the weekends sitting in his recliner. He’s sick of swollen ankles and muscle loss…of biweekly treks to the doctor’s office, of the nausea, of all the medicine….then there’s my despair over not being able to travel, of constantly worrying about George first – getting his meds, preparing his foods, changing the sheets and towels, keeping the bathrooms cleaned with Clorox, and so on. Having our day’s activities revolve around George’s medicines and infusions, around home visits by nurses, etc. In short, we sometimes fall into deep mourning for our previous lives. But the feelings don’t last too long and we are soon back to going with the flow for most of the time, managing to find some joy, laughter and gratitude during the days.

So, what caused the pity party was the talk of crushed dreams, so to speak. When we stop to talk about the this stuff, the conversation usually ends in tears and sadness. The crushed dreams stuff consists of topics like:

1. Why does cancer happen to people who love life, who love to get out and live and savor each day?

It hardly seems fair. On top of all the regular sadness and worries, we are dealing with an aching and longing to get back out into the world! We miss the world…there are places to see, foods to taste, experiences to be had! And there’s a feeling that the world is going on without us…that we have missed this summer season and can never get it back. How many more seasons will we miss? And we are feeling the urgency of time, of aging and that our time on this earth is running out, meaning we have less and less time to live life to the fullest every day!

Yes, this is probably just a huge WHY ME? WHY HIM? And then there’s the question, well if not you, who? I wouldn’t wish a leukemia or a cancer diagnosis on anyone. But my point is, not being able to experience life to the fullest as we have been doing fills us with great sadness and self-pity. It’s a big, awful change. Are you living life like you might get a cancer diagnosis tomorrow? We actually, unintentionally were!

2) Our dream of retiring and moving to Greece for 5 years may be dead

George is planning to retire in 4 years and we were going to find a place to rent near my cousin’s place in Paleo Faliro, outside of Athens. We had dreams of waking up, having coffee and then taking a walk or having a swim at the seaside. Dreams of popping into Athens on any given day and exploring, or taking a trip out to the coast, maybe taking a ferry out to a Greek island for a long weekend or holiday. Of open air markets with fresh ingredients for home cooked Mediterranean meals, or dinner at Edem, our favorite restaurant on the beach. Celebrating the major Greek Orthodox holidays with festive and joyous “panagheris” (celebrations) in the church courtyard, complete with grilled meats, flowing wine, live local music and dancing. Meeting our Greek neighbors and forming friendships and reconnecting with family. A simple life free of worry about possessions or designer anything.

But at least for the next year, George will be under the care of the hematologists at UPenn. He won’t even start getting his first round of essential childhood vaccines until 12 months past his transplant. I am hoping he will be able to travel overseas after a year. We shall see.

And in the meantime, there is the real possibility that George may develop graft vs host disease, as his new donor cells continue to take over. He has NO immune system, so there’s the real chance of infection. So much could go wrong, but we must remind ourselves that so much has gone and is going right!

We are constantly reminding ourselves that so many others have had it so much worse….George is home, working from his home office every day, moving about, eating, and only occasionally feels “queasy.” So many people come home from transplant with an aversion to food, nausea, vomiting, diarrhea, weakness, infection and graft vs host disease. There really is so much to be grateful for and so many reasons to be hopeful. So, time to wrap up this party, although I’m sure we will pop in again at some point.