“Triumphant patients refuse to be victims. Instead they take charge of their own care.” Greg Anderson

So, I am triumphant, but this does not mean I have not understood what is involved in loving a cancer patient. It is a high price to pay and I appreciate all your love. Every success is as much yours as it is mine. I am reminded of how this has impacted my family. My husband has been on antibiotics for a year. That is a story in itself.  When seeing the print out of all the antibiotics he has taken over a year for his doctor appointment, I burst into tears. I think of how he has juggled all the information that I did not want to hear or that was too much for me to understand in my fog. I think of him working so hard and travelling even when he knew I didn’t feel well or he didn’t feel well. When I hear Alex say that he worries about everyone he loves as we reminisce about Uncle Max, I know his worry is too much for a 9 year old. When I think about my mom flying out here even though I told her not to, I know how hard it must be to be a mom of a daughter in cancer treatment.  When I think about my lashing out at my sister, just because she was here, I know it isn’t easy. When I see Margie every 3 weeks, we re-live the automatic nausea that fills our bodies as we enter that closet. I know we both would rather be elsewhere, but manage to laugh and give each other “the look” when we see what is around us. When I think about all my friends, I miss the way things used to be, B.C. (before cancer).  As I am told my white count is too low and I should avoid people, I think just the opposite (even though I will hibernate for a bit to avoid close encounters with large crowds of coughing people).

This brings me to my taking charge. As usual, I am back on my focus of better food for my body and Jim must now eaten gluten free. Since being able to eat food (I still cannot taste sweet, but sour works fine), I have not eaten that much beef or chicken. The whole eating thing is too complicated for me these days. Once I get to Monday, I should be back to a normal-ish pattern. When I was getting my weight for treatment, I seemed to have lost 2 more lbs, but I am sure they were pounds lost from my elbow because everything else seemed the same. Every time, the nurse asks me like she hears my mom, “are you eating?” and I respond that I think I had different clothes on last time. My rationalization never seems to work right and I usually end of saying something about last time I was weighed in just a towel. The nurse usually responds that they don’t need to see that…hmmm….show time in the closet? They don’t want to pay for entertainment, so this may work and they haven’t seen anything until they have seen me doing my tambourine dance with a coconut bikini top.

Back to the closet visit, I definitely am not feeling as bad as before…could it be the slow drip, the positive energy, the increased oxygen flow, the fact that it was not standing room only or ??? All I know is one of my fellow closet mates told me that she never drinks anything for fear of a stinky toilet. Terrible! Another closet mate complained about the chairs, but was told the same thing as they told me: not broken. These closet mates also feared that there was a poster of their faces somewhere with darts or their charts had a red flag “warning, difficult patient.” They had concerns that they were taking too much charge of their care, but I told them that there are so many patients who need doctor help now. We are not those people. We have to think of all the little things like reminders to do a test, reviewing labs, finding your missing body parts because there are just too many others who need so much more help. We used to be there and now we are in a different place. As we watched a woman being carried to the bathroom by her husband, we all felt her pain and wish she wasn’t where she is now.

I am happy today to avoid the coughing people and pick strawberries (or rather watch Alex pick strawberries) in the sunshine and enjoy the fresh air. There is something to be said in wearing my rain boots and walking in a muddy field with the scent of strawberries!


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