About the Hair

Dear Dr_______________,

I want to begin by saying I have always thought the best of you and any day I did not, I was in the wrong. I hope you know that I appreciate that you have a tremedously stressful and high skill profession and a very important one.

Today, I pointed out to you that I had lost a lot of hair due to etopside phosphate. This chemotherapeutic agent is a very strange drug that apparently does not achieve a consistent level in the blood stream of patients and is therefore, difficult to dose. It is a topomerase inhibitor (hence the name) and apparently needs more expose to work as it only works in the S phase of the cell cycle. Because of this strange behavior and this feeling I had not gotten a large enough dose to help my brain tumors (etopside penetrates the central nervous system), I was very surprised when my meager hair started falling out. I even signed a release warning it would fall out, but did not really believe it. As you know, this is not the first time I had my hair fall out so I should not be surprised.

My hair completely fell out in the summer of 2001 when I was being treated with taxtotere. I remember you very solemnly coming in and telling me that my hair would really fall out in two weeks time. I had read this, but I still said, "Do you really think so?" I remember it so well - the room, where I was sitting, where you were sitting Those were good days. In fact, I remember pretty much every thing you have ever say to me though I am always in such a rush to make my points I don't seem as though I am listening. I felt you needed to personally reiterate this so I would know or really accept it. As I was leaving that day (it was my first day of chemo), you asked from the door of your office if I needed anything or if I needed any questions answered. Of course, true to form, I did have a question about a hypersensitivity reaction that had been alluded to by a nurse. You don't remember, but I remember it like it was yesterday. I went to my parents house that weekend terrified the whole time (thinking I would be sitting at dinner and all my hair would fall out or I would have to be hospitalized far from my doctor after the first round of chemotherapy) and as you said, like clockwork, my hair fell out in clumps at the two week mark. I would run my fingers through my hair and it would come out by the thousands. I thought it was fascinating , but awful. By the end of the weekend I had no hair. Hair, hair everywhere. Hair thrown out the window on the Pennsylvania Turnpike, hair clogging drains. No wonder women have their heads shaved. Before this experience, I thought I might get lucky or that they were being dramatic. All hair comes off and all cancer patients know this, but all hair falls off. This surprised me I retained my eyebrows for a year , but when a very sweet friend died of colorectal cancer, I cried so much that my eyebrows and eyelashes were all gone. That is what makes you look blank. To this day, I want my eyebrows back. I never told you, but my son's dermatologist talked me into this drug that grows eyebrows on a famous model. I was always fascinated by it. It cost 120 dollars and it DID NOT WORK. I guess it was destined to fail since I was on chemotherapy, but he thought it might.

I always hid my lack of hair from my you, until once I was in the hospital for lymphedema and I did not know you visited patients in their beds and you caught me bald. I think you caught me bald in the Wawa once with your daughter. I was becoming increasingly lazy about the scarf. I dashed off quickly in the Wawa because I feared intruding in your private time. You probably don't remember. After I was caught, I increasingly ran around bald. My biggest fear was you seeing me. Why, I really can't explain. I was so scared you would react I guess. My students didn't mind, they never stared and were very cool with their bowling ball head, blank faced teacher, but the people outside, especially in retail establishments were and still are hard to deal with. Gawks, dropped jaws, stares, gratuitous smiles, questions and long cancer stories - you name it. But you know, I developed an unconscious method of looking down and it helped and I came to see listening to others who have had cancer as part of my work in life. I could tell they needed to tell their story.

As I grew a little more hair during the less harsh navelbine treatment, it was different, but still noticed. Once someone made fun of me from a car. I have been called a man many times, even a strange man. Perhaps because I was wearing a woman's outfit? I do dress like a girl. I always feel young inside, you know like I am thirty, I feel I have a young personality. But, outside, I look like a seventy year old man. Do you know, that I see my reflection in the side of the NMR superconducting magnet (it has a huge silver dewar) of our NMR spectrometer at work, I will be surprised because I see a seventy year old man. I don't know who it is. After eight years. I don't know who he is. I say, "who is that old man and then I am surprised - it is me!!! " Why does it surprise me? I think I never came to grips with it, I avoid looking at it just like my partially removed breast.

For awhile, I died the peach fuzz hair I had developed blond - it was extremely fun. I had no qualms. When I went to the hair place (first time after eight years - it is one thing I have saved on - hair cuts, shampoos, styling, conditioners, time in the shower - bald head has very easy upkeep) they made me sign a waver because they thought it would fall out and refused to dye it blond because it would be less visible. I said quite emphatically, that they did not understand my goal. A. I did not care if it fell out and B. I wanted it to look less visible. She could not get out of her mindset that she was trying to make it look normal which was impossible. It made me look more bald, but less like an eighty year old man. Now the color is not so good, but I know it will fall at a very high rate dye it with the etopside - but why do I care.

I will get back to some important points about hair that people take for granted, but first Doctor -------------, I want to say that you were always so respectful of my hair, never saying anything. It is good not to say anything. Truly. I remember the first day I came in wearing a scarf, I was so embarrassed. Had I picked a good cancer scarf. Did I look OK. I never tied a scarf like that in my life. I had spent several hours practicing. I thought you would be taken aback, but you did not even flinch. Everyone else had to comment, but not you and I was so grateful. You did not even bat an eye when you saw me at the Wawa or caught me without warning in the hospital bed.

It was the right way. Comments on my hair are not appreciated unless initiated by me. Don't tell me you can't tell I am hair challenged. Don't tell me it looks good because I do not know many women who would choose this look. In America many are obsessed with their hair. Once I was at work and the group of students and teachers we were asked how many died their hair (it was a very large group) and nearly all said they did (including me).

So in all the years, you only once said anything about my hair. You said, when I asked about my lack of hair after years, that yes, I had probably suffered permanent hair loss, but it would grow in a little. You were right. I appreciated the candor.

So finally, back to today, I said to you, "Look my hair is falling out." You gave a mild reaction. I said because I have to try to make levity out of all situations, "I finally understand why men who are in this situation shave it all off and you said, "Well if you do that it makes it look like it was intentional." I said, "In this case, I can't pull it off." But you, know I prefer it all off. I hate male pattern baldness.

Strangely enough, since I am recovered from the decadron highs and lows people come up to me again to talk about their cancer and their hair loss. It is one of the powers of the bald head. As I have stated, I have the power and I have the responsibility to listen. Though when you are permanently or seriously bald people (except you) make constant unwelcome comments, the newly balding are simply obsessed with their own situation and need advice, mainly about scarves and hats. This one very nice lady has approached me several times recently and I demonstrated to her how I tie scarves which is different from anyone else I have ever seen.

This is no interest to you, but for many it is all about the hair. This woman could have talked for an hour about the hair.

You know what I told her at the end. I told her right now it is all about the hair, but it is not about the hair. Dr. __________ it is nothing about the hair. You know that and I appreciate that. I appreciate that you don't even act like you notice. Because it is not about the hair. It is about battling cancer and staying alive to raise your children. It is about being a good person.
No one should be judged by their hair or their looks. Cancer destroys the looks society craves, but we have the responsibility to transform ourselves and be the change we want in the world so that our spirits outshine our bald heads (a little joke).

as always, and very sincerely, Mary

I read Cicero used the term as always. It is true I am as always.