All Trumped Up

I am forever grateful to have survived cancer. This blog article is simply to raise awareness about chemotherapy and permanent hair loss (alopecia).

I’ve read and heard comments from people that permanent hair loss is not a big deal; that I should be lucky to be alive. Yes, I am forever blessed that I am indeed alive. But the accusation that being alive trumps my right to express my displeasure that I am bald is all trumped up! Baldness is a big deal, not just to myself, but also to society as a whole. Go online and search Donald Trump and the word wig or hair. The endless focus and stories surrounding his hairline say it all. I have strong empathy for men out there who deal with male pattern baldness.

Baldness is accepted by our society at times. Macho athletes now shave their heads and it’s cool. It’s a start. But the baldness of the president-elect of the United States is not accepted. And female baldness is certainly not accepted. There is acceptance for those undergoing chemotherapy. Our society has empathy for brothers and sisters who share in this fight. But then, permanent baldness is another story. If a woman has male-pattern baldness, she is considered unfeminine. If a woman has alopecia, she is stared at like a freak show. Or, she is mistakenly assumed to be a cancer patient.

Don’t get me wrong; there is nothing wrong with being a strong cancer patient fighting for his/her life. But who wants to be labeled for life as something that they are not?Unfortunately, this ugly disease does result in people fighting cancer for the rest of their lives. I’m not belittling the struggles that others face daily that are even more difficult than permanent baldness. I’m discussing this issue only because recent news tells me that it could have been avoided. It is that fact that makes all the difference.

There are two drugs, Taxol and Taxotere, which have similar outcomes and side effects. But Taxol does not have the significant long-term side effect of permanent hair loss. Taxotere is made by a drug company that has overtaken the market share of this multi-billion-dollar-a-year industry. And the reason women all over the country are upset is that there is alleged fraudulent behavior. Wouldn’t you be upset if permanent baldness could have been avoided?

Each of the women I met along my journey through cancer treatments had a vibrant, interesting life before cancer. I did. And want to be known for who I am not for what disease I had. Having little hair on my head is a neon billboard that says, “I’m fighting cancer” or “I’m not feminine.” I am much more than either of those labels.

I’m not going to lie. When I read that the chemotherapy cocktail I was given had de-womanizing effects, I wanted to throw up. But news of the cause of my lifelong, hair-loss hangover was a relief for my husband and me: “Phew! I’m not a freak. There is a reason for this baldness.” Even I, a bald woman, share society’s viewpoint that female baldness is not acceptable, unless there is a temporary medical reason.

But this medical impact is permanent and comes with permanent impacts. For one, breast reconstruction surgery was not recommended for me because the doctors were unsure if I had an autoimmune disorder. The alopecia was a major factor in that. We didn’t know why I had alopecia. And even though I didn’t test with the typical blood test markers for an autoimmune disease, it was clear my body was rejecting my hair follicles. To the doctors and me, alopecia was an outward sign of something inward that wasn’t working properly. And we feared that my body would reject a breast implant as well.

Over nine years have passed, and many bad emotions have turned to joy as I watch other women conquer this complex curse called cancer. Time heals some wounds. And love is a cure for much. But, hiding my baldness is an ever-present chore. I was in my thirties when diagnosed, and I have a long life yet to live.

So I am indeed concerned that these doctors, who held my life in their hands, were not given the proper information from the drug distributors about the long-term impact. I have no doubt that, had I been told that Taxotere had a chance of permanent baldness, I would have selected Taxol. I know this because I have notes asking four different doctors the difference between the two. And I was told that the main difference was the inconvenience of getting the Taxol more often. This inconvenience is nothing compared to forty years of wearing a hot, itchy wig. A wig that often has a mind of its own, especially in the wind.

Some may think, “What is the big deal? There are side effects of these drugs that include a secondary cancer. I don’t hear people complaining about that.” The difference is that I knew of that risk and decided on that risk. The difference is that I made choices based on the information given. Choice. Choice is what makes us human, male or female. Is it possible that most women, not just me, might have chosen Taxol over Taxotere?


6 thoughts on “All Trumped Up

  1. I definitely would have chosen Taxol instead of Taxotere. Being almost bald since 7 years has totally changed my life. I have learned to live with my baldness but it’s an ongoing struggle every day.

  2. Thanks for this very thoughtful account of how it feels to lose your hair forever, simply because you never had an informed choice—even when you did your best to research your alternatives. And how awful that your permanent hair loss led your doctors to advise against reconstruction. Breasts and hair…the two physical characteristics that define a woman most! Yes, that’s a big deal.

  3. Thank you for sharing your story……it is you and every woman on this site that has given me the strength and perseverance I so desperately needed when I believed I was to blame for my hair not coming back ( doc asking me repeatedly what was I doing to create this problem). I have dreams of a discovery to help each of us but the work we have all done to educate and put this story out there gives me pride to know that less and less women will have to deal with this outcome. I have a lot of life left to live and I will not let this define me but I surely miss some of the very things that I used to dislike as a woman ( I would be most grateful to have multiple bad hair days and HAVE to pluck my brows and shave my legs). Wishing every precious woman on this site a blessed New Year. Charlotte……Virginia

  4. I was brought to tears reading your story as it conjured up so much of how I feel dealing with permanent hair loss as a result of my breast cancer treatment with Taxotere.

    All of us were courageous in our battle against this dreaded disease. The months of biopsies, surgeries, CHEMO, radiation..the waiting..the unkowns. I believed that as a “survivor” I would physically look like my prior self-I was told my hair would grow back within 4 months after cessation of treatment. I was even given a handout with that section highlighted. At almost 2 years post chemo I have to deal with the reality that I am never going to be the same and the “hair” that I have now is as good as it’s ever going to be. Damn, does that sting!

    We should have been told the facts, given options and the information we needed to make an informed decision. Given the facts, there is no question I would have chosen weekly Taxol over tri-weekly Taxotere. Who wouldn’t?

    I am so sorry that you are dealing with this and thank you again for your eloquent post and for helping to inform and get the word out on the devasting side effect of permanent hair loss caused by Taxotere.

  5. July 2009 diagnozed breast cancer…aug 2009 lumpectomy given…not given any option…sept 2009 chemo started fec t. Jan 10 chemo finished…radiotherapy and herceptin given… breast reduction on left as they dont match…job botched!!!! feb 2011 herceptin finished…still wearing wigs…have no eyebrows… have to pay for eyebrow tattoo… ask doctor why….it could be herceptin!!!! nov 2011 hair very thin like old man through top…tell doc…dont worry will grow when stop taking tamoixifen. Wigs itching now find i am allergic to the lace. 2012 find info regarding taxotere..tell doc…no help..your alive arn’t you!! by now diagnosed with borderline personality disorder due to image…dont like having to explain all the time about hair! 2013…have painfull sciatica and teeth are breaking….find out taxotere cause bone weakness!! Start loosing teeth! 2014 have micro discetomy on spine does not work..left with chronic pain..pins and needles in fingers….chronic fatigue…2014 srart having surgury to sort out painful lumpectomy scar and bodged up left breast reduction!!!…2015 have been disabled from job due to pain….5 surgurys lata…breasts now resemble london underground…have n feeling in left nipple or under breast and right is still hard and painfull… present day…still NO SUPPORT….NO ANSWERS….NO HELP…. i am sick of being told “”well your alive” NO I AM NOT ALIVE!!! Its a half life… i am not me… i dont reckonize the woman in the mirror..i want me back…my life has been ruined..and now the final nail…i find out that IF i had, had a masectomy….i woul not have had to have chemotherapy….herceptin….I WAS NOT GIVEN THIS F@#*ing i have had my life ruined by a comsultant who thought he knew best ..who in reality he did not!!! I try and make a joke out of how i look so i dont get hurt by people who dont understand…i am fed up with being asked hows your treatment going…im fed up with who i see in the mirror!!! BUT MOST OF ALL…I AM FED UP WITH BEING TOLD….”WELL AT LEAST YOUR ALIVE!”…….WELL GUESS WHAT..I WOULD RATHER HAVE HAIR AND EYEBROWS!!!!!!

  6. Hi, I too am a victim of the drugs that on one hand saved my life but on another destroyed my life. I handled the cancer well, telling myself it was a blip, I even hid it from friends and family only my partner , brother and a few very close friends were told. No one warned me of the side effect but even if they had would I have done things differently? The oncology team say it was the only drug avail for my cancer.
    It was only after treatment when my hair did not return did the oncologist, who by the way was great, said she was seeing increasing numbers, I have met another lady being treated at the same time under the same oncologist who is also a victim. I have been referred to a dermatologist who says he is seeing about 10% of women now, that is not a small number or rare risk that manufacturers say.
    I have read other stories on the site and they are heartfelt and sum up how I feel. It really is a life sentence I am not looking for retribution or compensation, but I would urge the manufacturers to research the reasons why this happens, so that future ladies can be spared the trauma and they plough some of their profits into the stem cell research to find a solution.

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