The Phoenix Zine

Life in the Short Term

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It’s been three weeks and three days since I started IV ganciclovir to treat my Cytomegalovirus (CMV).  Depending on the results of my bloodwork tomorrow, I have a minimum of a week left.

And I have to admit, it’s getting to me.  One of the things that has helped me cope over the years was the belief that others had it worse than I did.  That belief was effective in helping me avoid my own feelings through denying my right to them.  If someone else has it worse than I do, I reasoned, then what right do I have to complain about what I have to deal with? 

For me, the people that had it worse were people who had cancer.  Chemotherapy, hair loss, radiation, loss of appetite, vomiting, fatigue…, I knew I had to deal with a lot but I always wondered if I had cancer whether it would be too much for me.

What stuck out in my mind about cancer was that treatment involved toxic drugs.  So when I first read the “cytotoxin'” warning on the IV bag of ganciclovir, I freaked.  A cytotoxin, I learned, “is a substance that has a toxic effect on certain cells”.  (dictionary.com)

Industrious researcher that I am, I looked up the side effects online.  Big mistake.  Stomach pain, nausea, fatigue…, the list goes on.  Studies that show adverse effects on fertility and the blood.  But the thing is, it’s really no different from other drugs and treatments that I’ve had.  They all carry their own risk and have their own side effects.

Because the thing is, that’s my life.  Living my life requires a lot of risk assessment and short term planning.  Take the IV ganciclovir for example.  Yes, it could have long term adverse effects on my body, but if I don’t take it, my immunosuppressed body is going to have great difficulty fighting off the CMV on its own.  Therefore, I pick the drug.

Another example would be either one of my transplants.  Having a transplant carries risk.  The surgery is complex, and the drugs required after the surgery can cause cancer and other not so fun side effects.  But in both cases, it was either have a transplant and a chance at life, or die from organ failure. 

When the choice is a chance at life with side effects or death, it isn’t a choice to me.  However, when I am out of crisis mode and I have more options, it is then that I try to make decisions that give me the best opportunity to accomplish my dreams and aspirations.

Except I’m still a young woman.  I have my own dreams about living till I’m at least in my eighties.  I’d like to get married and have a baby and be a grandmother someday.  I want to travel the world freely without having to make sure I’m in a country with well-developed health care.  Knowing sacrificing my dreams may be the cost of staying alive sometimes makes me wonder why I’m trying to stay alive in the first place.

Having to make these choices isn’t fair, and it remains unfair whether I am the sickest cancer patient or I’m on my third chance at life.  I am filled with grief and anger whenever I think about it.

But, as I realised while writing an email to a friend the other day, I actually like what living life in the short term has taught me.  That life is fragile and wondrous.  Nothing in life is guaranteed, and when good things do happen, they are a gift.

Imagining life when I’m 30, 35 or 40 feels impossible.  At times I find it difficult to look past the next day or the next week, let alone years in the future.  After 27 years though, I’m still here.  Maybe if I keep taking it day by day, the days will pile up into years and decades, and I will get to my eighties after all.

3 Comments

  1. Amy,
    You’re a very good writer. We hope that other people will get to know about your blog and that it may touch them and help to deal with their own situations.
    Chris and Lisa

  2. Amy, you are an amazing person. Life is fragile and it is wondrous. Each day is a present Sharing with others, may help that one person who is going through something hard to deal with. You are often in all of our thoughts and in our prayers. Your writting skills are excellant and I can feel your struggle, emotions and also your strength coming from your words. So continue to take it day by day, and know that we all have you in our hearts and in our prayers.
    Yesterday is past, tommorrow becomes today, so continue to live in the present and it will become the past. All my love Always Betty

  3. Amy,
    I didn’t know some of the medical terms in your blog, but from my small medical dictionary I think CMV means a cytomegalovirus. I hope the blood test shows the CMV is under control now and you wont have to put up with IV.
    Where did you find the interesting painting for your blog? I can see the phoenix there, and other images as well.
    Lisa and I read several of your posts.
    Chris

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