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a taste of home

Over the past few days of being in the hospital, my mind and emotions have stabilized as I acclimate to the lowered doses of pain medication and immuno-suppressants, but there has been a backdrop of frustration and tension in my body. I’m able to leave the hospital and go out to lunch or take a walk, and the other day I even spent two hours strolling around in Hampstead with my bestie, my mom. With my cannula hidden in my arm sleeve and drain bag of bile tucked up into my trousers, I felt as if I may have looked almost normal.

Yesterday I was told that the cytomegalovirus (CMV) has increased in my body instead of decreasing, meaning that the past 10 days of IV treatment didn’t work, and I wouldn’t be able to be discharged. Today they have increased the medication and with it has come more nausea and vomiting. Someone once told me that everything you put in your body has side effects, and I have never believed that more than now. With the 16+ medications I’m taking, the side effects become stifling to consider; for each medicine there may be 5 to 10 side effects that tend to counteract each other. With all this going on, it’s a miracle that I can feel any sense of normalcy at all, but I’m so happy in the moments that I do.

The plan is to measure my blood work again in two days time, but I will likely be in hospital another week depending on the CMV count which has been completely unpredictable until now.

I know it’s all going to work out in the end. At some point I will be discharged and go home and from there a new normalcy will  ensue. I also realize how lucky I am that my liver and kidneys are working, and that the CMV in my blood work it is not something more complicated or serious. It doesn’t necessarily make it easier though. Being stuck in the hospital for weeks and weeks without sight of an end is a mental whippersnapper.

In the scheme of things, one more week isn’t a lot of time; I’m surprised sometimes at how the weeks start to role into each other and even more surprised that the visitors keep coming. Without these wonderful moments of conversation and these glimpses of the outside world, it would be far more difficult to remain here day after day.

The biggest challenge at the moment is that I’m missing my son and feeling guilty about not being present in his every day life. It is difficult to remind myself that one more week is not going to traumatize him any more than what he’s already been through, which, based on how well he’s doing, doesn’t seem to have had a big impact. Every time he has visited or I’ve spoken with him on the phone he is smiling, in a good mood and incredibly loving and understanding of the situation. Today when he visited the hospital I invited him up onto my bed and he asked, “are you not in pain?” Then he reminded me he has to be careful and gentle, and not touch my belly. I am beyond grateful to my mother who taught him how to understand what was happening to me in the hospital and how he could prepare for my arrival home.

It’s hard to imagine what it will be like when I finally do return home, whenever that day comes. The time spent in the hospital has undoubtedly been beneficial, and with a little effort I will return to some semblance of a life which I hold so dear. To be able to tuck my son in at night and know with an element of certainty that he will wake me up and climb up in bed between my husband and I? It will be delightful; it will be perfect. Something deep within me, not always present, knows that things already are.

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