While waiting for my appointment with Melissa, I went into the infusion room to get my egg salad sandwich and bag of chips from the cart. I need to get it before I am scheduled for an infusion, which is usually around 3, when the sandwiches are gone. So I go in and get it from the cart and usually eat the sandwich in the waiting room.
A few different volunteers push the cart around. The main cart lady, whom I shall not name, is very moody. Once she told me to leave because sandwiches were for patients only and I couldn't take it out of the room. When I told her I am a patient, she said OK. Still, she makes me wait near the nurses' station because she doesn't like me following her cart. Last week I came in late, and she was very concerned about me. She had taken out my sandwich and chips and set them aside specially for me – good mood day.
Then on Monday she growled at me and said I couldn't come in and get my sandwich because most patients get theirs at the time of the infusion, and I should be sending someone from the desk in for the sandwich. I hadn't thought of bothering someone at the desk to get my sandwich, because I could get it myself. I explained that I couldn't pick it up at the time of the infusion because it would be too late. "I'll give it to you just this once," she said, gritting her teeth.
Subtext: "I am the cart Queen and you shall not come near my cart if I am not in the mood to let you near."
Geez. Everyone is nice at the Dana-Farber Cancer Institute, and so it's especially jolting to bump into someone who seems mean-spirited. It's small potatoes, but everyone is under stress, and it just adds to it to have to dance around someone's moods.
Weird episode number two: I got my good report from Melissa (details just below) and I was talking to my sister and laughing over the phone about the sandwich incident. I also told her that at the end of my exam with Melissa, when she told me I could go home, I said, "I guess I'll have to return my sandwich."
The patient sitting next to me laughed. After I got off the phone, he said, "I'll take that sandwich." We started talking about why we were there and he said he was being treated for one of the chronic diseases, CML – chronic myeloid leukemia.
When I told him I had been treated for acute myeloid leukemia (AML), he said,
"When I was diagnosed they told me it was better to have the chronic. They said the "C" was so much better. They kept saying 'It's good you didn't get the "A," the "A" is much worse."
I gave him a look. I think he realized what he had just said. I had previously told him I was doing well. "Oh, but it's great you're doing well," he said.
I cut off the conversation, turned to my newspaper and wished him luck.
My thought bubble: "Hey, buddy, turn on your filter. It's not that hard to do."
It didn't bother me that much, but it made me think about the need for more people to put those filters on. I won't get into the difference between acute and chronic and which is considered "better." I guess you can put a spin on any illness and say one is "better" than the other. But voicing your spin to someone who has the other is just not the thing to do.
It goes into the category of unhelpful (or, frankly stupid) things people say, not just pertaining to cancer. I remember when I was pregnant, there were people who just couldn't help telling me disastrous pregnancy stories. For that matter, it goes for many problem situations, as in, "I had the same thing happen to me and it turned out terribly!"
Anyway, back to the good part of the day, my appointment with Melissa. My white count was 7.5 (high normal!), my hematocrit was 28.2, and my platelets were 26. Those were still below normal, but they were good for me and high enough to avoid transfusions.
I also had an appointment with Dr. Francisco Marty, the infectious disease specialist who's followed me since my first fungal pneumonia in 2003. He examined me, looked over my numbers and said I could stop taking Voriconozole, the anti-fungal drug I've been taking since my long hospitalization last winter, when a got another fungal pneumonia. My liver function is slightly elevated, and it might be from the "Vori." So at this point it may be hurting me, and it's not helping me, because the fungus is gone now. To compensate, I need to double my Prograf to 1 milligram once a day.
Dr. Marty always makes me smile. Monday was no different. The "good vibes" I got from him stood in contrast with the bad vibes from the moody volunteer and the overly-talkative patient.
YAY! GOOD FOR YOU!!!!!!!!!
Putting out hope instead of fear is likely difficult if you are dealing with the fear, but I have been trying religiously to exude positive vibes, generally using you as an example. Two people close to me are dealing with difficult illnesses right now and I have re-told your story underscoring the positive. You are a living example that it matters less what 'they say' because we really don't know all of the factors at work here. Hope can only help, whereas negativity and fear can definitely hurt.
As for the 'egg salad lady' chalk it up to one of the odd episodes from your many years dealing with the medical profession. Maybe it's a food thing... remember the industrial size can of peaches delivered to your room in the hospital?
I've been on both sides of the stupid-comment situation. For me, forgiveness is the answer. The first time I remember saying a most unhealing comment was when I was 16 years old and attending the funeral - my first - of the mom of a classmate. As soon as I said it, I realized it was a bad choice of words. But as I grew up (and continued to feel badly about it), I saw how it reflected my own anxieties. My emotions created and released the surprising comment. I could only hope that they realized I was young. I had to forgive myself and learn from it.
As a pregnant woman and later as a cancer patient, I've had people say the stupidist things to me. In a visceral way, I recognized the shared origin of their words with my funeral comment: vulnerability and fear. Forgiving my indiscretions made it easier to forgive and forget theirs.
Your story suggests he blurted out a mantra that has been helping him cope with his disease before he thought through the effect on you. That he back-pedaled reflects his sensitivity and desire to only help.
As for the issue, is acute better than chronic, or is it worse? I've dealt with this issue, too, since I'm living in-and-out of treatment for a type of cancer with no known cures. My thoughts: "My cancer is better than your cancer!" What? Really?
The most touching part of your post today was the image of the moody snack-cart lady putting aside your favorite order when she didn't see you there. Actions speak louder than words. She cares!
I'm happy to read about your counts. Thinking back to the days when you were hospitalized and taking baby steps, your progress deserves a standing ovation for everyone involved. Bravo!
With hope, Wendy
When my Mom was diagnosed with breast cancer this year, the doctor told her, "For breast cancer, you have the best kind there is to have." My Mom said she felt like saying, "I'd really rather not have any." Chalk it up to odd things people say and a lack of a filter. All cancer is bad, period.
As for the lunch cart lady, that's just bizarre.
Great news that you didn't need any transfusions! YAY!
Glad you had a mostly good day at clinic. I always show up with my peanut butter and banana sandwich so I've thus far avoided the moody sandwich lady.
The voriconazole is pretty nasty in that it interacts with many other drugs. I'm glad you're finally free of it. I think I'll be on it for a while.
When I was just beginning treatment, there was a patient who liked to hold court and latched onto new patients to impart her unsolicited wisdom. I know deep down, she thought she was helping, but some of the things she said were truly awful, so I did my best to avoid coming into contact with her. Unfortunately, I ended up sitting next to her for a blood draw one day and managed to earn her undivided attention. Chris tried everything to get her to mind her own business, but she refused to take any hints. He was polite up until the moment she advised me to write a letter for Chris to read after I died. Some people just don't think.
I'm thrilled that you didn't have to have any transfusions and hope you ate that sandwich anyway.
and now Kareem's taking up the cause of CML...so at least the asshat at DF will have something else to talk about now, should you ever run into him again.
and the cart lady..c'mon..really? she doesn't have a pack of Cub Scouts to reign over? sigh. it's sustenance for cancer patients...oy freekin vey!
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