squeaky wheel

My parents have always told me, “the squeaky wheel gets the grease.” I have always hated this saying.

I am not naturally inclined toward “squeakiness.” I prefer to stay quiet and have faith that people and things will pull through given a little time and patience. So most times they tell me that I need to be “squeaky” in order to make things happen, I secretly hate the saying to myself, say “that’s not really true in this situation,” and stay quiet.

I’m not sure why I decided to go into journalism with this philosophy… but I did, and I worked at my high school and college newspapers as well as several professional reporting jobs without having to ever get too squeaky. By squeaky, I think what I mean is calling or emailing repeatedly, leaving a ton of messages, yelling, getting emotional, or just being generally annoying.
I have noticed, though, the further I move into this cancer diagnosis and into adulthood, that my parents might be right. Cancer isn’t for the quiet.

Today is a perfect example.

I still have a pleural effusion. This accumulation of fluid around my right lung started when I had my surgery last February and has continued and continued and continued to now, despite near-daily draining through my chest catheter, a surgery in October that didn’t work, overall improved health, and steroids. Well, maybe the steroids will start working. The jury is still out. It causes me constant pain and discomfort and the longer I have it, the more I hate it. But this post is not about how much I hate my pleural effusion and wish it would go away so I can live a normal life.

Managing my pleural effusion and chest catheter and draining make me dependent on vacuum bottles (that cost an arm and a leg) that I have to get from a medical supply company. I have been doing this for 10 months, so I have a pretty good idea by now of how long I have to spend on hold to order the bottles and how long it takes to get them once I do this. Long story short, this time, the company failed and by this morning, the supplies still hadn’t shipped and I was out of bottles. Not wanting to go another day or night with pain, shortness of breath, and general discomfort, I decided to be a little squeaky.

I asked to speak to the supervisor. The supervisor said the bottles would ship today and that she would arrange a second shipment so I wouldn’t have to call back. This meant I would still have to go at least another day without draining. She was also just a little too unsympathetic, acting like she was shipping out an impulse purchase from Amazon instead of my medically and quality-of-life necessary drainage bottles. She even asked how much volume I drain every night, and when I told her, she didn’t stop to think how uncomfortable it might be to have that much extra fluid around one’s lungs.

So, goaded by my mother, I got still squeakier. I showed up at the place where I got the drain placed and asked the front desk if they could help me. Much to my surprise, the nurse and the scheduler remembered me from last year and were very sympathetic. I didn’t even have to cry or yell or threaten to call my oncologist. They “found” a few bottles laying around. Made my day. Then they called the company and complained, again, for me and I got the direct number of another supervisor and the assurance that I would be helped immediately if I ever had this problem again.

I think the moral of the story is, I have to speak up. I don’t have to necessarily be super annoying or angry if I want to see results, but I have to say something. Even though I feel most of the time that the medical system is too unwieldy and disorganized for any staff member to have any incentive for being extra helpful, it happens sometimes. In fact, this week I have experienced extraordinary care from two different nurses in two different departments. My faith has been a little restored. Also, the squeaky wheel gets the grease.

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11 Responses to squeaky wheel

  1. Sara says:

    Thinking of you… Hope you’re ok.

  2. Diana says:

    Hi Lindsey,

    I work for a domestic violence crisis shelter and primarily work with the children (ages 2 to 17). I lead art emotional workshops, hold individual counseling, oversee social skills in the moment of interaction between the children (to redirect in allowing themselves to be heard and hearing others) in play group, offer brief lessons on empathy (feeling with someone vs feeling for someone), and start and end each group with a connecting activity.

    Reading your entry reminds me of the disconnection and harmful ways society relates to each other. I’m so sorry with on top of the challenges you’re experiencing, people can’t have one simple feeling of understanding. It’s truly outrageous to me. I often find compassion for others; however, I also find compassion for myself in having to witness the way we hurt each other.

    Btw, I used to not squeak myself, but I’ve become very squeaky (yes, I find my own self annoying at times!).

    Your experience reminds me of the book I’m currently reading by Maria Szalavitz and Dr. Bruce Perry called Born to Love, why empathy is essential-and endangered. The reason I read your entries is because you have the ability to be vulnerable to a point where I can’t help but feel with you. You don’t know me, but for the past couple of years, I think of you, constantly wishing you well, and marvel at your courage (which I know helps others). You are one of my heroes. I suspect along with the ones in touch with you, there are also the silent ones feeling with you. I was one of them and decided to get, well… squeaky. :)

    You remain in my thoughts and with feeling, Lindsey.

    Diana

  3. naz1968 says:

    I just found your blog,how is your treatment going on? My husband has stage IV pancreatic adenocarcinoma and we are going through a lot.You are in my thought and prayers.
    http://familyfightingcancer.wordpress.com/

  4. AshMac says:

    Where you at, Liver? We start to worry when you don’t show for a while.

  5. Diana says:

    Thinking of you.

  6. Shanna says:

    I hope you’re okay Lindsey, it’s quiet over here.

  7. Rachel Fliegelman says:

    Miss you Lindsey…I hope and pray your soul will rest peacefully.

  8. Stephen Haney says:

    Rest in peace, Lindsey. Condolences to family and friends.

    Sincerely,
    Stephen

  9. Diana says:

    I will miss you. My heartfelt condolences to yours.

  10. Jon says:

    I was very sad to read about the passing of Lindsey. I have been reading her blog on her courageous fight against her cancer. I was worried about the blog not being updated for a couple of months when I found out that her amazing spirit had passed on. My condolences to al her family and friends, your lives are blessed with knowing her. I will miss reading her blog. Good bye…

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