I couldn’t possibly tell you how many times someone has said to me,” but you don’t look like you have cancer” after learning of my condition. I don’t think people believe me or even take me seriously at times because I look so “normal” and healthy. Most people have the perception that people with cancer all look a certain way. I was guilty of this prior to being smacked in the face with a stage 4 metastatic cancer diagnosis. But what I have learned and want to emphasize through this post is that cancer doesn’t look the same on everyone. It’s not a “one size fits all” disease. The common mis-perception is that people with cancer are all bald, and perhaps sickly looking. And while this may be true for a lot of cancer patients, it is not true for all. I have had metastatic breast cancer for almost six years and during this time I have never been bald or appeared sick, even when I have been at my worst.
Baldness is not a symptom or side effect of cancer, rather it is a side effect to some chemotherapies.
I remember sitting in the waiting room for hours on end at Sloan Kettering, waiting for a room to open up so that I could get my treatment every three weeks. I have been on soooo many different treatments over the years, but at this particular point in time I was on Navelnine and Herceptin, both of which are administered intravenously. Navelbine was prescribed to me after learning that the cancer had metastasized to my hip and spine. Whereas most chemos are administered through an IV drip, Navelbine was pushed through my vein by the nurses while they were completely suited up from head to toe (gloves, mask, cap, paper suit and booties). It was so surreal, like a scene out of a movie or something. I asked the nurses why my chemo was given differently than most others and why were they so protected when giving it to me? They explained to me that Navelbine was so incredibly toxic, it is mandated by law to be administered by hand. I was advised that it was so dangerous, that if I were to get so much as a drop on my skin, I could potentially lose my arm. Therefore they had to push it by hand and be in the room with me the entire time to monitor and oversee that the needle never slipped from my vein. Total craziness! But as strong and toxic as this chemotherapy drug was, hair loss was not a side effect.
As I would sit for hours in the waiting room, I would make conversation with other fellow breast cancer patients, and yes…most of them were bald. We would exchange our diagnosis, treatment protocols, and experiences. Often times they would tell me that they were earlier stage and that they had a certain number of rounds of chemotherapy and they would be done with treatment. As much as I felt terrible that they too had to deal with the emotional and physical trauma that comes with a cancer diagnosis, in a way I sort of envied the fact that they had a light at the end of the tunnel. Not to make light of anyone’s circumstances, but there I sat, looking like the healthier of the bunch (mostly because I had a full head of hair), yet unlike these other women, I had no foreseeable date/time to the end of this battle. All I have been told over and over again is that I am incurable, will be on treatment for the rest of my life, and that they will keep me alive for as long as they can with the drugs that are available. The irony.
One of my greatest blessings over the past six years, is the incredible resilience that my body has demonstrated. I give thanks for this every day because I feel like my body should have been completely ravished by everything it has been subjected to. But by looking at me, no one would have the slightest clue what I have endured over the years, and continue to at present. No one would be able to tell that I have had multiple surgeries, that I have been post menopausal for six years, that I have been on chemotherapy consistently, along with a whole slew of other drugs. No one would know that an inflammatory tumor essentially mutilated my right breast and that I am awaiting mastectomy/reconstructive surgery. I certainly have my battle wounds, but only I know that they are there. From the outside looking in, I look like the picture of health. And although this resilience has been an immense silver lining for me, I sometimes feel that this whole notion of not looking sick dismisses a lot of what I have been through and what I am still going through.
Having hair and not looking like I have cancer, has been an obstacle for me when it comes to doing my part in the cancer community.
When I speak or write to people/publications in an effort to pitch my story, the feedback is always great. “Wow, your story is incredible, you are so strong, what an inspiration…..” But when I follow-up with a photo of myself, suddenly the content becomes less desired because I don’t have the look to go along with the story. “You look well and healthy and we wouldn’t want to offend other women with cancer” is what I have been told. Do you have other photos where you look more sick? I actually find this to be offensive and hurtful. It’s as if what I have gone through isn’t real or relevant because I look “normal.” But I also get that it can be difficult to understand an illness when the signs are very difficult to see. All of what I am trying to accomplish is for the sole purpose of helping other young women who are newly diagnosed or who are in my same predicament. I truly believe this is “my why” and purpose in all of this. But my appearance sometimes hinders the good that I am trying to do. And that’s ok. At times it can be super frustrating but if anything, it serves as confirmation to me that so much more awareness needs to be brought to the forefront surrounding this issue. There are so many people who are living with chronic disease and appear to be totally fine. This just goes to show that the old saying never judge a book by its cover holds so much truth. You never really know what someone may be up against simply by forming assumptions, based on physicality.
Looking “normal” sent me to the hospital for a week
Last December, I was hospitalized for a week after getting what should have been a common dental procedure. I had my wisdom teeth extracted because they were impacted and it ended up being a total nightmare. During the procedure, one wisdom tooth was pretty impacted so when the surgeon extracted it, she had to use more force, which resulted in a piece of my bone coming off with the tooth…and that was just the beginning of the whole fiasco. One thing led to another and I ended up getting a massive infection that needed to be surgically drained out of my neck (literally! I had a hole in my neck). It was seriously the most painful thing I have ever in my life experienced. I was admitted to the hospital for a week and am still on the mend. I am currently getting physical therapy on my jaw so I can regain full mobility. Needless to say, so many things went wrong that could have been avoided had the proper precautions been taken and had I been treated with a little TLC considering my circumstances. I know for certain, had I went into my initial consultation looking more ill, the oral surgeon probably would have taken my stage 4 cancer diagnosis into consideration, which would have prevented all of the unnecessary pain, trauma and hospitalization. After speaking with the medical staff and doctors during my stay, they all shared that I should have been on antibiotics prior to the procedure to prevent infection, but I wasn’t instructed to or prescribed any by the oral surgeon. I don’t think she realized the severity of the risks due to cancer and the treatment I am on because I appear to be so well. When I see doctors outside of my oncologist, they also find it hard to believe that I look the way I do after reviewing what I look like on paper. Same goes for when I have to visit the Disability or Social Security offices. They look at me like I’m full of it. I’m constantly fighting for my coverage and benefits. It’s so nuts!
I’m not alone in this struggle. Meet my friend Michelle.
While these examples are based on my own personal experiences, I think I speak on behalf of most cancer patients who look well. I have a friend Michelle (who I met through my site :))…a young woman who was diagnosed with metastatic stage 4 breast cancer last year. (Might I insert that she is kicking cancer’s ass!) We ironically share the same oncologist and treatment plan. We had lunch the other afternoon and she shared with me that she struggles with the same issues as do I, due to the fact that we both do not look like we have cancer. Acknowledging how fortunate we are that we do not appear to be sick, here is what Michelle shared:
“Although I am extremely fortunate that my side effects aren’t visible 99% of the time, the fact that people can not see that I am “sick” makes it hard for them to accept and believe that I am actually going through treatment for stage 4 breast cancer. The sleepless nights, pains, hot flashes, nausea, mood swings, anxiety, emotional toll it has taken on me and my family, time and money that is constantly ripped away from us-none of it shows by just looking at me and I have to say I do a pretty damn good job covering it all up. Very often I hear comments like “must be nice” when I have to take a day off work to rest or even go to appointments. Oh yes, I just LOVE laying in bed all day hot, sweaty, depressed, and in pain. NOT!” … She struggles with people not understanding the severity of what she is going through. I think anyone whose diagnosis is taken lightly or dismissed altogether can relate to how she feels and what she struggles with on a daily basis.
I really am not one to complain much about my circumstances. I don’t consider myself to be sick and that word sick has never resonated with me. Yes I have been through hell and back and am still walking through the fire sort of speak, but I’m still standing and I see the glass as half full. I feel blessed to be alive, I cherish everyday and live my life to the fullest. I have zero complaints about looking well, but I do want to have a voice, I want to help others, I want my circumstances to be taken seriously and I want to be understood.