Pity Party – Table for One

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!

Living and loving life

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!

Take us back!
I want this life back!
Naively assuming we will have our health for years and years
happy and unsuspecting of what lies ahead
Not even remotely thinking about leukemia
Just before Christmas, 2021…feeling the symptoms of leukemia, but oblivious
December 2021…just before the world came crashing down
This was actually just before George’s bone marrow transplant…squeezing it in!

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.

4 responses to “Pity Party – Table for One”

  1. Well written. It’s tough to be human, isn’t it? No need to explain or apologize. All the so-and-so had it worse stories don’t answer the Why question or make use feel any better. And the only answers are cliches’, cliches’ that are true perhaps but trite nevertheless. Hang in there! I’m praying for you guys (a cliche’, I know)!

    Liked by 1 person

  2. What you’re feeling is very relatable and understandable. As you pointed out, many have been in your shoes and have asked the same questions and have gone through similar difficulties. But it’s hard because going through it is very difficult and emotionally draining. I remember after a year of good therapy and working with C through vomiting several times a day from the bolus feedings and his g-tube placement, still not being able to swallow, my life centered totally around his care and Nicholas’s second in line. The moves the dozens and dozens of hospital visits. But after the first year post brain surgeries and the improvement in C’s speech and mouth (it had straightened), we got a call in January 2005 that the tumor had grown and we had to take him back for another brain surgery. My words to Troy had the time were, “I can’t do this anymore.” It’s too much. It felt like an unsurmountable obstacle, a huge mountain to climb again. And I remember Troy’s response when I said I wanted this to be over and go back to normal life. My life revolved around basically being a home nurse and everything it entailed for C. Troy had responded with, “Dorothy, this IS our life.” That was like a slap in the face and awakening. It got me through the next year of radiation therapy and therapies for C and the g-tube removal. So, yes, I totally get what you’re feeling, feel for you two, and it’s totally understandable. It’s okay to feel that at times and want a break! Even want to escape it all! I did that through my Wiggles Mom’s message boards since I couldn’t go any place and didn’t have friends in WA to visit with. Even if I did, I couldn’t leave C alone. But all the good that has been happening for G is great. Positive steps have been moving forward. Keep the faith and hope no matter what. After all, we don’t really have a choice. We must go through it, right? People always ask me (and I’m sure you), “I don’t know how you do it.” Even I’ve said that to you. But I’ve forgotten. You have to. You JUST DO IT. Hugs and Love to you and George!

    Liked by 1 person

    1. Thanks so much for your thoughtful response! Yes – this IS our life! I totally get that…but still mourn my old life at times. You all went through so much with C…we just don’t have a choice, do we? I think it must be harder when it’s your child then when it’s your spouse. We love you! 💜

      Liked by 1 person

      1. yep, you still mourn the old life– meaning the more “normal” life you were living, for sure! Yeah, we just do what he need and have to do. 🙂 I don’t know but would guess it probably is harder when it’s your child. However, whatever difficult/hardship we experience is the toughest for each of us, I’d think. ❤ We love you all too!

        Liked by 1 person

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