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the luxury of battling cancer “privately”

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in the last few weeks, several celebrities have sadly passed away from cancer. some have hit hard, because i have worked with them in my career. but all were tragic.

i heard repeatedly from friends on social media and in person how “brave” and “selfless” these people were to keep their cancer battles secret.

i had many feelings about this, some as a professional publicist, some as a former caregiver and some as a present patient. most of my feelings had to do with the awareness of the perception that somehow these people were more courageous having spared the public from their medical tragedy.

i feel when people talk about someone dealing with a health crisis privately as being ‘brave’ , it’s often another way of saying ‘phew, i’m SO glad they didn’t make me deal with that.’  and that says more about the speaker than the person suffering the disease.

as a publicist, i absolutely support and understand the benefits of keeping an illness private or at least downplaying its impact.  celebrities are targets for sycophants and opportunists, and once vulnerable, their potential income, reputation and legacy can be impacted by their health crisis, it is absolutely in their very best interest to keep themselves protected and safe from gossip and thieves.

and celebrities needn’t expose themselves. most celebrities have the appropriate finances, physical and emotional support. they have special access to medical advances. even the inner-circles of celebrities are often more substantial than the extended family and friends of most of us regular humans. so, they are not in danger of having to manage their lives and medical care alone.

i have recently “come out” to my friends after being diagnosed 2 years ago, because i am scheduled to enter a clinical trial and i would rather have people know than have to people wonder what the heck is going on with me while i become less available, less focused and while my body changes from the treatments.

if there is one thing i know it’s that when you share the news of this, you have to prepare for how people will respond. many people do not respond favorably, supportively or even kindly. they don’t want to know about your illness, having to think about you being sick, their relationship to it, the inconvenience of it,  or heaven forbid, death. and i don’t particularly relish the idea of sharing that news either.

when presented with this choice when my husband had cancer, we decided not to tell anyone. most people were not aware he had cancer until recently and he has been in remission for over 15 years. there wasn’t anything we needed from anyone emotionally, physically or medically. we felt comfortable and confident dealing with it on our own.  it was a wonderful luxury to have that privacy and that emotional safety.

in one of the very few instances where i needed to share the information of my husband’s illness, i was dealt a lesson i would not readily forget.

there was a long term client that i had nurtured as an unsigned artist. our campaign was successful enough to get him recently signed to a label.  i had just booked a gig for him at a legendary club in london, and needed to explain to him that i couldn’t go with him. that day my husband would be getting surgery and it was not a surgery i could reschedule or miss. if it seems silly to have to explain that to anyone please see my future post (cancer: the narcissist repellant) knowing that my husband would be in surgery that morning and he would be in flight en route to london and therefore unreachable, he had someone from the label call to let me know my “services” would no longer be required. i was instructed by the very cold and smug person at the label that i was not to take it ‘personally’.  that is my experience with telling anyone about cancer. not a good one and certainly doesn’t bode well for sharing that information with others.

even with devastating disappointments like that one, muddling through on our own when my husband was in treatment was far different than where we are now. he had a horrible disease, but it was curable and it was just two adults who didn’t need much from anyone else, emotionally, physically, financially. we were good. we had each other.

but now we have a child, and i have a disease without a standard or curative treatment protocol. things are different, our lives are different and the needs of my disease are different, it is is incurable.

i am not a celebrity. my life is about serving others pretty much. so, when i was diagnosed with cancer, the biggest concern was, what is going to happen to the people who depend on me.  my cancer was not about me. i did not have the luxury of being able to privately cope with this news. i had a child and a husband, we have no family where i can get treatment and the family we do have is a half a world away.

now, my husband is the caregiver, but he is in a much more difficult position than i was. he has to support us financially and emotionally and take care of things logistically. he has made huge sacrifices to ensure i am cared for and my daughter is cared for with little disruption.

for me, there are definite benefits to having people know, because of practical aspects of raising a child when you have cancer. when you have a child, you can’t just disappear into isolation. my child’s life cannot come to a grinding halt. it’s more important than ever for her to have consistency and community and support. and those things take concerted effort from my husband and myself. but in sharing our news, we have found there are some people who are willing to help us in our efforts to ensure some balance in our family life.

but the act of sharing the news and living with that out in the ether can be difficult.

to tell my few good friends was a HUGE burden, because it breaks my heart to put them in a situation where they are confronted with tragic news. i hate making my friends cry, but i will say, that i am so grateful for their compassion and love, and i know they are concerned for my family.

on the flipside, when you have to share the news with someone for practical reason and it is someone you have no real personal connection with, you actually have to confront the fact they could care less about you with great regularity. it makes it very hard to get along socially with people when you realize they know you are suffering and still insist you take a brutal subway ride, because it’s easier for them. mentally, the selfishness and silliness of day to day life is easier to cope with, when you know people don’t know.

myeloma patients suffer for many years. many people with cancer don’t just suffer through difficult treatments themselves, their children are separated from both the patient and the caregiver parent for extended periods, patients and caregivers lose jobs and income, families lose homes, life savings and security and many people lose friends and community. even if a patient doesn’t pass away, you don’t often see the result of what cancer can do to the patient or family who survive it.

should these families who struggle with childcare, housing, access to medical care, the daily toxicity of medical insurance and caregiving, remain quiet for the benefit of others? does that make them strong, or does it make us weaker as a community to ignore our most vulnerable?

when celebrities “bravely” fight their cancer “privately”, although it is in their best interest to do so, it often gives the public the wrong idea. for instance, tom brokaw came out as a myeloma patient recently and suggested that he was in ‘remission’.  while technically true, it bears saying that in myeloma remission does not mean the cancer is gone, furthermore, while preserving his public image and looking so well and not sharing his treatment plan, he gives the appearance the battle is easy. myeloma, is in fact a cancer that is incurable. there are many patients whose employers, family and friends assume that after treatment their friend will also be in “remission” and are confused and suspicious when they are told the patient’s cancer continues to come back and was not cured by treatment. it’s my belief that misinformation like this can impede patient support and research funding.

in another medical situation, i made a different choice about privacy too. when i was diagnosed with an immune disorder 14 years ago, i didn’t tell anyone. i kept going with my busy life. i built several businesses, fought infertility to have and raise a daughter and had plenty of adventures! if i could continue on this way with cancer, i would do so, but this battle is different and i don’t think i’m going to pretend it’s not.

though the one thing i maintain is my positivity, it should not be confused with denial. too many foundations and fundraisers and publicists (like myself) are guilty of putting a pretty face on cancer to make people comfortable. why? does that convey the urgency of our need for a cure? does it express the needs of cancer patients and their caregivers and families who are buried under the weight of the disease? no.

you don’t have to be delusional to be positive. every cancer patient who wakes up everyday and keeps trying to live is “brave”. no matter how they have to do it. who they need to depend on, and you know what? even when you cry, you are courageous, because you dare to feel and not give up. even when you beg for help whether for yourself or your family, you are fighting the battle. and that is the message we need to send everyday to everyone facing cancer or whatever medical struggle or disability. there is so much positivity to be found in the daily fight even if you aren’t cured. share your story, don’t stay in closet, come out and let us know how we can help and how we can make this stop for others. you don’t have to be perfect to be an inspiration.

my battle may not be private, it may not be pretty, it might make you uncomfortable, and it is most certainly already making me incredibly uncomfortable, but it will be real. and that is vital. it is vital to all the patients out there who are struggling financially just so they can stay alive, for the families who make sacrifices everyday to ensure their family members gets the medical care they need, who are fighting for access to life-saving treatments and who are desperately fighting the clock for research to make new strides toward a cure. and i want to stay honest for all of us, patients and families and caregivers and doctors and researchers, and for the future of the cancer fight.

 

2 thoughts on “the luxury of battling cancer “privately”

  1. I love this post. Thanks for sharing and coming out of the cancer closet. Your gift of effortless written eloquence will serve others well and hopefully provide some outlet of relief for you. I know writing does that for me and I hope your positivity reigns supreme over the self-centered, ignorant people who claim to be bothered by you not suffering in silence!

  2. You have the real battle to deal with, the real discomfort. The rest of us can can only do what we can to support you but to turn away is to spit in your face and I’m floored at the behavior. I just lost a dear friend to cancer of the larynx. Another is a breast cancer survivor. I lost my father to pancreatic cancer. Now you are in the battle. Another friend. A real friend. A supportive, selfless, amazing human being who we are lucky to know. It’s ok to make us cry. It’s not your fault. It isn’t fair. Thank you for being real. I love you for many reasons. Right now, especially that.

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