Becoming a Patient

Since I rediscovered the lump six weeks ago I’ve had four mammograms, four breast biopsies, a lymph node biopsy, two breast MRIs, a brain MRI, a PT scan, surgery to install my port (where I get my chemo infusions), and have been stuck with hypodermic needles at least a dozen times for blood work. Now, alongside The New Yorker magazine and Louise Erdrich’s gripping novel The Round House, my nightstand is cluttered with different anti-nausea meds, pain relievers, and my new favorite dealing-with-cancer-anxiety drug of all time: Ativan.  I pop a milligram of those puppies, get into bed, and steal a few hours of peaceful sleep before one of the girls pulls me from my slumber.

The life transition is abrupt.  I had spent the previous week working toward a huge project deadline for work, flying to LA to visit my sister, and running around the playground with Yael.  Then the lump, the tests, the waiting, and finally, a life-changing call.  I’ll never forget the sound of the doctor’s voice: “Adina, I have to talk to you.  You have breast cancer.” So starts the flurry of note taking, appointment scheduling, and becoming a cancer patient.

I had a lymph node biopsy this week. The experience brought me back to that scary period before I really knew the extent of my illness.  While I thought I had moved on from that period, and that this blog would only be about moving forward, I realized that there is more to say about this transition to becoming a patient. I thought perhaps my reflection might help others who have to go through this at some point in their lives. 

It was Wednesday, February 27th, the day before my diagnosis.  I was sitting in the lobby waiting for my breast biopsy.  I was thinking back to the previous week when I had an ultrasound and mammogram that revealed a large mass in my right breast.  The radiologist told me that because I had no history of breast cancer in my family and was still breastfeeding, most likely this was a galactocele, a clogged milk sac.  Yes! A galactocele!  This is great news.  Not only do I not have cancer, I should probably be on Star Trek! I am actually very grateful to that benevolent, octogenarian radiologist for giving me some peace of mind (however false it would prove).  I had to wait a few days for the results of my biopsy anyway, so may as well be in denial that I have some sort of science-fiction-sounding clogged milk sac!  I sank into the soft waiting room chair, leaned back with my iPhone, and decided to take my mind off things by scrolling through facebook status updates.

Dr. Hannah Gardner, an old camp friend of mine who is now an epidemiologist, frequently posts articles about public health issues. (She runs A Green Slate, a company that identifies toxic products in households and recommends easy, inexpensive, non-toxic substitutes and solutions.)

That morning Hannah happened to post the following LA Times article: “Breast Cancer Among Young Women Increasing.” I tried to tell myself this was just some sort of bad coincidence, but deep down, without too much of a doubt, I knew that it wasn’t.  While I wanted to believe that a galactocele had grown twice its size in the last six months, I just couldn’t. 

A medical assistant brought me into a waiting room to change and it was there where I broke down. She asked me what was on in my mind.  I told her I had two little girls, one only a baby, and that I was terrified I was going to get bad news from this test.  She, like the radiologist, tried to be hopeful.

The doctor who did the biopsy told me I looked like Anne Hathaway and we chatted about the new Les Mis film. (We enjoyed every minute of it but were red-faced embarrassed for Russell Crowe). I knew that she wouldn’t be able to tell me anything definitive from the biopsy, but of course I asked: “Well, what did you find?” She said that there was no presence of milk, which made it slightly less likely it was a galactocele.  She held a strong poker face.  However, the ultrasound technician was a little more transparent.  Before she left, she said, “I’ll be thinking of you.” Why will you be thinking of me???? I got the diagnosis call the next day, a message left on my voicemail.

I didn’t really think about that day until I returned this past week to get the lymph node biopsy.  The same medical assistant greeted me.  I told her that I had met her last time, right before I was diagnosed.  She told me she remembered my face but wouldn’t even look me in the eye.  I tried to connect with her: “In some ways, that day, the not knowing, was much harder than now, even though I’ve started treatment.”

“Of course,” she said, and officiously took my blood pressure. “Someone will come in and take you to the procedure room.” She walked right out. 

This encounter hurt.  Why did this woman, so supportive and comforting during one of my most vulnerable moments, now act so withdrawn, so emotionally detached?

Next came the same ultrasound technician I had had previously.  I tried to connect with her as well: “I remember meeting you before my diagnosis.  Do you remember me?” 

“Unfortunately, yes,” she said.  “Not everyone comes in here with a tumor as large as yours.”

 Are you fucking kidding me?

“So everyone who saw my tumor on the screen that day knew it was cancer, but just couldn’t tell me.”

“Yeah,” she said sheepishly. “We just can’t say anything, even if we are 99% sure of what we see on the screen.”

 What? So instead the doctor chats me up about Les Mis as if everything is fine?

I know these people are not supposed to be my therapists, but the lack of social grace in these encounters jarred me. I wanted to give them some advice as someone with more emotional intelligence.  Listen up, here is the script:  “I do remember you.  I remember how worried you were, and I am so sorry that you are going through this.” Anything along those lines would have felt supportive, validating, comforting.

Instead I lay on that biopsy table with tears streaming down my face, and nobody noticed. 

I was grateful for two things that made me feel better.  The doctor said, “You must be going through a lot.” I was grateful for even this small gesture of empathy.  Also, despite the previous comment about my large, memorable tumor, this time the ultrasound technician grabbed my hand when the needle went in. She grabbed it not because she thought I was in any physical pain, but just to be emotionally supportive.  Good rebound.

I thought back to the Les Mis doctor, the technician who was “thinking” of me, and the other medical assistant.  All of them were watching this young woman’s biopsy. All of them probably spoke afterward about how scary and large my cancerous tumor was.  They all knew I had cancer and I just lay there scared out of my mind.  I felt like a little girl on the playground who didn’t know the big secret that everyone was telling about her.

After speaking with quite a few medical professionals, the truth is that doctors (including my radiologist and biopsy surgeon, not ultrasound technician) are allowed to tell you if they see something concerning. They cannot diagnose, but they can be honest.  What if I decided to not even show up for the biopsy because I was convinced I had a galactocele!

During all of these tests I detach from my body.  While meetings with my oncologist and surgeon empower me with knowledge, these tests, where I am naked and moved into all sorts of positions by strangers, make me feel helpless and vulnerable. 

So what can we do about this?  I keep thinking there should be someone who helps people to navigate the first month after diagnosis, someone who helps prepare people emotionally for the testing, the not knowing, and the fear.  I say this because this week, six weeks later on that table, I experienced what felt like PTSD.  It was like going back to a war zone after battle, before getting injured, and remembering what it felt like to wait and see what harm would be done that would affect the rest of your life. 

The doctor who did this recent biopsy at least acknowledged my human experience, coming back to the beginning of the journey, but this time with no hair, and marks on my body from previous biopsies. I would even advise taking it a step further. Before picking up the needle, say my name one more time.  Ask me how I’m feeling at this moment and how treatment is going.  Tell me that I am brave.

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13 Responses to Becoming a Patient

  1. Carolyn says:

    >——-[HUGE HUG]——-<

  2. Rose B says:

    Hi Adina: This is Rose, Michelle’s aunt. I am in awe of your insights and your ability to write about them. Thank you for taking the time and energy to reflect and share your journey. I, along with all of your loving family and friends, am hoping for the best and following your progress. You are truly an inspiring person.

  3. I’ve been sitting here, trying to think of a pithy worthy comment. I think your postings here really are dazzling, your ideas really do reach out to many other people. I feel very honored to be part of your world and connected to you during this journey.. and that comment still doesn’t do you justice!.. but there it is.

  4. Arielle says:

    Adina,
    The role that you are describing belongs to a medical social worker- oncology social worker obviously in this case. Their sole job is to support, guide, provide information/ resources, etc. Of course, all the doctors and technicians should be supportive in the way that you describe, but the benefit of connecting with the medical social worker is enormous. Thinking of you and your incredible strength and beautiful girls.
    xoxo
    Arielle

  5. Katrina says:

    Thank you for your post. I am a radiologist who does these very biopsies and has these same conversations with my patients. My mother is also a breast cancer survivor (more than 20 years out now). I try to be aware of what my patients are feeling and it is so very tempting to reassure them, even when you are fearing the worst- mostly because you are also REALLY hoping that it won’t be cancer. Reading this only inspires me to try to be more sensitive to my patients. Even though it might not count as much coming from a faceless commentator- you ARE brave. Thank you for your honesty and insight.

  6. Jessica says:

    Beautiful. I’m loving you every minute.

  7. Adele McKeon says:

    You are so fucking brave-I only hope that I could be half as brave if I were going through this. Sometimes people forget-being professional doesn’t have to mean not being human-as a social worker, in forever reminding myself not to put to much distance between myself and those I work with.

  8. Jessica says:

    Adina: You are brave! You don’t know me, but my classmate, a friend of yours, Gabe shared your blog with me. Thank you for writing so honestly and clearly about your experiences. Sending you good vibes.

  9. Susan Barnes says:

    Adina, you are brave. Thank you so much for sharing your experience. May you have a full and speedy recovery.

  10. Alli says:

    Adina: This last entry gets me so angry. It makes me think of the many strange interactions I’ve had with doctors. It makes me question the responsibility doctors/medical staff have to care holistically which is not how many are trained. You posting your perspectives as patient illuminates the ongoing struggle between our humanity and our biomedical world. thank you for writing so vividly. love to you, the girls, and Ian.

  11. Nnacy Winne says:

    Being an RN from acroos the country, I am no less moved by your blog, than if I had been there in person. Thank you for your frank share on your biopsy experience. I have been known to empathetically initiate a warm hug for just such a scary occaision. Having been a patient more than once, I can certainly concur w/ that vulnerable feeling! We must always be mindful that though it is an emotional challenge for us to walk that professional yet compssionate tightrope, nothing compares w/ pure validation of what someone is experiencing!! Be real & learn to process how to do that w/ compassion & professionalism! Blessings to you all!

  12. Nancy Winne says:

    That’s Nancy Winne

  13. meryl newman cedar says:

    Adina, Firstly, we are sending love and hugs and so much support from all the Cedars. Rereading your blog, I am struck by how important it is for your healthcare providers to
    react to you as a human being, and not a disease. You really make it so clear how important this is for your emotional health and physical well being. I hope you share this with all of the folks you encounter. Your articulate and heartfelt words would be helpful . Keep writing

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