The Email I Sent to Loved Ones After My Stage 4 Cancer Diagnosis
One of the hardest parts of having cancer is telling people about your diagnosis. It’s a burden to have to repeat “I have cancer” to family and friends and deal with their varied reactions in addition to taking care of your own mental and physical well-being. So when I was diagnosed with stage 4 non-Hodgkin lymphoma in early 2014, I decided to set the tone from the start for how I wanted to be treated.
Although I didn’t have an exact diagnosis until I got the results of my liver biopsy, it was the last in a long series of tests which pretty much added up to a pre-diagnosis (not a real medical term!) of “I have something malignant in multiple parts of my body but we’re not sure exactly what it is.” Therefore, I had time to think about communication and I drafted an email with some blanks to fill in once I had an exact diagnosis, treatment information, etc. I sent the email to a trusted adviser (my sister) and incorporated her feedback. On the day of my actual diagnosis, I told a very, very small group of people, then filled in the blanks on my cancer announcement email to my family and friends and hit “send.”
Sent: Friday, April 18, 2014
To: BCC list
Subject: Chiara health update (no, I’m not pregnant)
Please forgive the impersonal nature of this communication but it is easier for me given the amount of people I’d like to communicate this to. Each one of you deserves a personal call about this, but it honestly feels too overwhelming. I could just use the always efficient MCN (“Mothers Communication Network,” with co-leaders Mom and Mother-in-Law), but this email allows me to retain control of my personal information and I’d like to live a little longer with the illusion that I have control of everything.
I’ve been having back and leg pain since November. It was diagnosed as sciatica, but after several weeks of physical therapy sessions I got an MRI to see which discs were the problems. The MRI showed that my discs were fine but my bone marrow looked abnormal. At that point I started seeing a hematologist/oncologist to rule out all the bad stuff and see if I was just “normally abnormal” (and, knowing me, that was a very distinct possibility). Every test I took showed something abnormal. Each test on its own was not necessarily a prediction of serious illness, but the accumulation of abnormal test results suggested cancer, so I had a biopsy. While all of this was going on, I went from back pain to awful headaches to bouts of nausea and no appetite. Despite all of these symptoms, I really thought nothing serious would be wrong with me and that maybe I just needed some anti-anxiety medicine.
Really though, I should have known it was a big deal – Italian Jews just don’t lose their appetite over minor illnesses.
I imagine some of you may be surprised you have not heard anything or much about this. Realistically, the odds of Kittatinny Regional High School’s “Most Talkative Female Senior 1994” keeping anything quiet are slim. However, I didn’t want to talk much about it as it was going on because, until there was an official diagnosis, there was no diagnosis as far as I was concerned. I didn’t want people to be unnecessarily worried or to make this dramatic when in the end I could have nothing seriously wrong. I also have a husband, kids, a job, family, friends, etc. and I didn’t want to spend my time worrying about the “what ifs,” so it was easier not to talk about it.
The result is that I was diagnosed with stage 4 non-Hodgkin lymphoma, that, in addition to being in my lymph nodes, is also in my liver and most likely my bone marrow. I have to go through a few more tests (including a bone marrow biopsy to confirm their suspicions) and then I will immediately start chemo. I should be done with the chemo in 18 weeks and I will not need surgery or radiation. No one wants cancer, but lymphoma is very treatable so I think I am fairly lucky. The kids will be told something close to the truth and I’m also hoping to keep working depending on how I react to the chemo.
Knowing you can’t really refuse a sick woman, I have some things I’d like to ask of you:
1. If you have any questions, feel free to ask me.
2. If you want to know how my husband is doing, then please ask him.
3. Treat me normally. If you’re going to be overly emotional, feel the need to hug me more than usual or be a real “Debbie Downer,” then come back to me later. I am trying to remain upbeat and composed and it is going to be all of you who help me succeed or fail (no pressure or anything…).
4. Please be selective when sharing stories about anyone you know with related illnesses. Keep in mind that if the subjects of your stories are not alive and healthy, it may not be a helpful story.
5. Unless you are a medical professional, a caretaker of someone with a similar illness or a survivor yourself, please don’t question my medical treatment plan. If wine was a cure I’d already be healthy so that plan is out.
6. Remember I have a family, a job, hobbies and interests. Let’s make sure to continue to talk about those topics.
7. My treatment is supposed to cause me to lose my hair so I’m going to proactively cut it off and try the trendy pixie look. Even if I look like Little Orphan Annie, your response should be, “Wow, I didn’t realize how cute you’d look with short hair!” If I’m bald at any point, your response changes to, “You look just as good as ‘Nothing Compares’ Sinead O’Connor or ‘Alien’ Sigourney Weaver” and, yes, I will probably let my kids draw on my head with magic markers.
8. To those of you on Facebook – I am undecided about whether or not I will post anything about this illness there. I don’t mind if you tell other people this news, but it would be appreciated if you could follow my lead on Facebook (if you don’t see me posting anything about it on my page, then it would be good if you didn’t post anything illness-related on my page). The only exception is if my treatment causes me to lose weight – post as many skinny pictures of me on Facebook as you want.
Hopefully this email is fairly funny and only slightly depressing. As per #1 above, please let me know if you have any questions.
Also, I BCC’d everyone because I sent this to a mix of family and friends. Let me know if you’d like to know who I sent it to.
It turns out the bone marrow biopsy referenced in the email came out negative, so the Lymphoma wasn’t in my bone marrow but instead was on the outside of my skull, a rib and clavicle. One chemo port, six rounds of RCHOP and four rounds of intrathecal (fancy term for getting chemo injected into your spine) methotrexate later, I was declared cancer-free on Labor Day weekend, 2014 – clearly my body has a “thing” for holidays – and so far I’m still healthy.
Every single person who gets diagnosed with cancer will have a different experience, but here are some things I took away from my experience that might be helpful to anyone who has to share a diagnosis:
1. Be true to who you are. I’m a big believer that a sense of humor is one of our most important assets and impacts us physically, so that’s how I approached sharing my diagnosis. I mean, when you get your diagnosis on Good Friday, then you start wondering if the powers that be have a sense of humor too. So I made sure my cancer announcement was funny and not religious because that’s who I am. I think it was good for my family and friends to get a laugh from my morbid email and know I was still “me.”
2. Put yourself first. The email above was only sent to my own family and friends as my husband wanted to tell some of his family members personally and we didn’t want to ruin a family event the next day. People don’t like finding out after other people, but you have to do the best you can and sometimes it means telling different people at different times. Remember, no matter how much you love them, this is about you. I also “hid” behind email. I wanted people to process their emotions in their own time and be ready to be calm and collected in my presence. It was better for me not to tell people in person.
3. Think about social media. I explicitly asked people not to share my information on Facebook. I had already seen some pretty poor social media etiquette from friends and family so I thought I should make my wishes clear. Surprisingly, everyone got it and no one commented on Facebook until I started posting about it. You may have a different approach than me, but make sure to tell people what you want and expect. When you have cancer it feels like you don’t have control over much, so it can feel good to be able to control your information.
4. Be kind to others. No matter how you choose to communicate your diagnosis, people will react to it in ways you can’t imagine. Most people offer support, some are awkward in their wording but ultimately mean well, some will complain about what you say and how you say it and some won’t say anything at all because they don’t know what to say. You may not get the reaction you want or need, but remember that most people don’t know what to do and their first (emotional) reaction is not always them at their best.
While I hope none of you have to deal with a cancer diagnosis, I do hope my post was helpful to those of you who need a laugh or have to contemplate sharing medical news.
But, if you do get a cancer diagnosis and have the same weird sense of humor as me, feel free to reach out and I’ll write your email for you…
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