A Bad Hair Day

Well, in the many months since I last wrote, everyday has been a bad hair day! Literally. After a year and a half of waiting, willing my hair to grow back more fully and using Rogaine (for men no less - doctors orders), I finally started to dig deeper into the literature. I found two pieces on the web that pointed to the reality of my situation. One was an academic article: Permanent chemotherapy-induced alopecia: case report and review of the literature by Drs. B Tallon, E Blanchard, and LJ Goldberg, published in the Journal of the American Academy of Dermatology in August 2010. They focused on one 70-something patient who had come to their attention when her hair failed to grow back completely after chemo. It seemed that in their experience this was a fairly exceptional case. I felt as though I was the second person ever to have this result.

Then, after looking for more information about alopecia in general, I stumbled upon a press release on a web site called A Head of Our Time. Apparently I am not the second person ever to permanently lose her hair from chemotherapy. According to the press release, I am among the 3% of Taxotere patients who end up with permanent chemo-induced alopecia. Lucky me! Not one person - doctor or nurse, nor one piece of literature I was given or sought about breast cancer treatment even remotely suggested that permanent hair loss was a possibility.  

To quote from A Head of Our Time's October 2010 press release:

.Source

"Even though Sanofi-Aventis, manufacturer of Taxotere, admits that 3% of patients given the drug could experience alopecia, or permanent hair loss, oncologists don't seem to know anthing about it.  And no one is telling patients that their breast cancer treatment could leave them physically disfigured and emotionally scarred."

I contacted one of the authors of the case report to see if there were any new developments since the article. Unfortunately not. I contacted Dr. Goldberg, another of the case study co-authors, at the Boston University Hair Clinic to see what they might be able to do for me.  They coordinated with my dermatologist and she performed a scalp biopsy this summer, which she sent on to Dr. Goldberg. I finally received the definitive word that I am indeed suffering from permanent hair loss due to chemo. 

Despite the fact that I knew something was not right, it was a devastating blow to get the news that I will never have a full head of hair again. You go into chemo with the promise from everyone and everything you read that your hair will return. It may be curly or a different color or texture, but everyone assures you it will come back. For most people that is true. But those of us for whom it is not true have to adjust to a whole new reality. 

Even before I had the biopsy done, I had finally decided it was time for a wig. After wearing scarves for a year and a half I wanted to look "normal". They are, as many people describe, hot and itchy. The minute I return home, I take it off and go "bald". Everytime I pass a mirror I am startled to see myself and am very discouraged by what I see. When I want to step outside to empty the trash or take the dog into the backyard, I put on a baseball cap. I do not want to be seen as I am. Even though my wig is a good one and people comment on how natural it looks, I am much more self-conscious. In addition, there are so many adjustments one has to make to life without hair. I am about to go off on a long journey, half way around the world. Do I want to travel for the better part of two days in the wig?  Do I want to wear a scarf on the four plane rides and signal to everyone that I am a cancer patient - even though I have long since stopped chemo and my regular follow-ups show no sign of the disease. What do I do if I go swimming, or when I get on a boat in the salty sea air in search of ocean birds? Things I once took for granted have become problems that need to be solved. But most of all, this is one scar I didn't anticipate, and, unlike the others I have from cancer treatment, it is such a public one!

Wigging Out

Here I am, 11 months from my last chemotherapy session and I still wear a scarf when I’m out in public. It’s not that my hair is too short for my liking. It could be 1/8th inch long, but as long as it covered my scalp I would gladly go out into the world with my head uncovered. It’s that I still have more scalp showing than not. Not even a Donald Trump comb-over would allow me to pass for someone with a head full of hair.

  

Although I don’t mind wearing scarves, now that I’ve finished chemo and my yearlong herceptin infusions, I would like to feel as though I look normal and don’t still look like a cancer patient. It doesn’t help that my eyebrows and eyelashes have pretty much lost all the pigment they once had! 

One way I could look normal would be to purchase a wig. However, I made a decision early on in my treatment that a wig was not for me, and I opted for scarves instead. Once I got over being self-conscious about being easily recognizable as a cancer patient, I found the ease, comfort and colorfulness of the scarves suited me fine. They weren’t itchy or terribly hot, as I’ve heard wigs are. But now there’s a new wrinkle. I’m in the process of looking for a part-time job and although it’s not legal for employers to discriminate against me because of my cancer, you can’t really help how people feel deep down about hiring someone who has clearly been ill. In the interview or two I’ve had, I try to be up front about my cancer and to explain that I’m done with treatment and am fine, except for the return of my hair. I do this because the interviewer can’t legally ask about my health, and I want to allay anxiety about whether I’m well enough to work, or will miss a lot of work because of illness. Nonetheless, who’s to say that my preemptive strike has the desired effect?

I’ve had several friends and professionals tell me that although it shouldn’t matter, I have a better chance of landing a job if there is no sign that I have been ill in the first place. I’m torn. I would like - need, actually - to be working again and want to do everything I can to get a job, but I’m not eager to go against my well-considered decision to pass on a wig. I’d like to think that a potential employer would see past my recent health history and would recognize the value I could add to their operation. Perhaps that’s too idealistic on my part, but I think I’d prefer to work for someone who would hire me despite the scarf.  Time will tell, whether I give in or hold firm, but what would be most helpful would be for my reticent hair to pick up speed and fill in the gaps a good bit faster!

I'd Like to Thank the Academy

It's that most American of holidays, Thanksgiving, and this year I would like to give thanks for so many things and to so many people.

I am eternally grateful to the doctors, nurses and medical staff who provided such excellent care and counsel. I am extremely thankful for the friends, family and colleagues who have provided such a wealth of support. I am particularly grateful to Lydia, my dearest friend, for all that she has done for me, and with me, during this long journey.

And it has been a rather long journey. After starting it in late August of 2010, I finished my yearlong Herceptin treatment in mid-October 2011. My port was removed just over three weeks ago on Halloween. I had a heart scan and a visit with my medical oncologist that same day. Everything checked out fine, despite one little mysterious abnormality in my other breast that called for an ultrasound. All was clear. I trust it will continue to be so for many years to come. Now I will continue the journey in a less invasive way, by taking an aromatase inhibitor daily for the next four and a half years, regular visits to the doctor and alternating having a mammogram and MRI every six months. 

It has also been a costly journey and I must acknowledge several wonderful groups that have helped me manage the out of pocket costs. Both Barnes-Jewish Hospital and the Washington University Physicians, who staff the Siteman Cancer Center, offer support for those who meet certain financial criteria. They helped with expenses not covered by insurance. That included my annual $5,000 deductible, which the hospital and physicians group covered in full in 2010.  In 2011, the physician’s group covered 40% of my chemotherapy drugs until I reached my deductible in early February.

To help subsidize the 60% of the chemotherapy costs not covered by the physicians or insurance, I applied to the wonderful Co-Pay Relief Program of the Patient Advocate Foundation for a grant. They paid a significant portion of the balance I owed to the Washington University physicians, and I am so grateful for their very generous support. The Co-Pay Relief Program is one of the few programs that will take a look back at medical expenses already incurred and will assist with those payments. I have also received support from The Breast Cancer Society to help cover related medical expenses, such as the drug, Arimidex, which I will take daily for five years.

With the help of all of those mentioned above, I was able to greatly reduce my balance with the doctors’ group. They then worked with me to arrange an 18-month payment plan with no interest, which makes my debt to them quite manageable, and is a huge help. I am eternally grateful for all this support, and it relieved a good deal of the stress that financial matters can bring, particularly when one is already dealing with serious health issues.

I have had kind offers from friends and family for help of various kinds. It has been hard to know what to ask of people, and luckily I was able to remain fairly self-sufficient. But I really appreciate everyone’s kindness and concern. It may seem a little after the fact, but I now have an idea for anyone who still might want to do something for me. If there were one thing I would ask of people who can manage it, it would be to donate a few dollars to the Co-Pay Relief Program or the Breast Cancer Society, so they can continue to provide assistance to people like me, who need just a bit of help to fill in the gaps created by large deductibles or co-pays. Their help really made a huge difference for me, by providing peace of mind, diminishing worries about how to pay for some of those out of pocket costs. And, in January 2012, I will be looking to both organizations again for support as we begin a new year with a new annual deductible!  Thanks!

Woe is me!

I have been through a lot these past 13 months, and I haven’t let it get me down. I’ve surprised myself throughout this ordeal by being upbeat and pragmatic. But over the weekend I think I finally reached my limit. 

It’s hard enough having hair that is being exceedingly slow in its re-growth.  When I saw the nurse practitioner in July she told me that in her long career she had only ever seen two other patients with such slow re-emergence of hair and she referred me to a specialist. Lucky me! I saw the specialist in mid-September and she asked about the incidence of male and female-pattern baldness in my family, and then recommended twice-daily applications of Rogaine – and not just any Rogaine, but Rogaine for MEN! And I have to give it a six-month trial before we go to plan B, which involves a scalp biopsy to determine the root cause – pun intended. So, I may be wearing scarves for another six months, long past the last of my herceptin infusions on October 17th and the removal of my port soon thereafter.

But the straw that broke the camel’s back came Saturday afternoon, when I was snacking on a small handful of roasted nuts. I hit something hard, which I thought might be a piece of shell, only to discover that it was a bit of tooth. I checked for a broken tooth on the side I was chewing on and, finding no gap, became concerned that the object in question was someone else’s. Yuck! Eventually, it occurred to me to probe the other side and there it was, a seemingly large gap at the back of a tooth. Drat. One of the last things on this Earth I needed was to have a major dental procedure, but there is no way around it the dentist said. I now have to have a crown. Lucky me!

To add insult to injury, despite having stayed remarkably healthy while on chemo, I have succumbed to a stomach bug this week and actually missed work today and a good part of yesterday. I know that the counting of such things is arbitrary, but let’s hope bad things only come in threes and that given my hair (or the sparseness thereof), my tooth, and this bug I’ll be free of this bad luck for a while.  If not, then woe is me!

One Year Later

There has not been much to write about since I finished radiation in late May. I have been very busy, between working three days a week at my office job in addition to doing consulting projects from home. Every three weeks I go back to the cancer treatment center for lab work and a Herceptin infusion. Everyday I take a hormone blocker to further minimize the risk of recurrence. Occasionally, I meet with the doctor, or the nurse practitioner or have some sort of test.  It all seems so easy compared to the four months of chemo, and the six weeks of daily radiation.

But today is a milestone. It marks the one-year anniversary of the discovery of the lump in my breast. I am not big on anniversaries of most kinds, but I have found myself thinking a great deal about this one.  After my doctor discovered the lump, things moved very quickly at first, and then seemed to go in fits and starts. Eventually, I settled into a very regular routine with my weekly Herceptin treatments and chemo every three weeks from early November to early March.  After that I fell into the routine of daily radiation, five days a week for six weeks through the end of May. I found that I quickly adopted the mode of placing one foot in front of the other, which served me well through surgery, chemo and radiation. 

But there is a sort of tunnel vision that comes along with that. I was focused on the present and going through each process of the treatment, and had pushed practically everything else to the side.  But now, with the worst of it over, the blinders have been pulled off and I have been forced to see beyond my treatments to a much larger world. Questions I was grappling with before August 20th, 2010 have reared their head again.  Big questions, like, what do I really want to do with the rest of my life, having left my employer of 20+ years in June of 2007?  How can I make a better living than I am right now and feel like I am doing something very worthwhile – for me and for others.  Life-sized questions.  Perhaps this sudden view of the bigger picture is part of what some refer to as post-treatment letdown.  Dana Jennings of The New York Times wrote about his own experience with this phenomenon as he chronicled his cancer journey in the paper.  His piece Losing A Comforting Ritual: Treatment hits home for me in many regards. It is as though after such intensity you finally are able to look up and outward beyond your own little world of appointments and treatments, and sometimes you are unsettled by what you see in terms of your own future and the state of the world.

So, until I resolve those questions, I have narrowed my vision again and continue to march along, one foot in front of the other until late October when I will stop receiving herceptin and will have my port removed. In the meantime, I wait and watch as my hair takes its sweet time filling in. My last chemo was March 7th. It is nearly five and a half months later and, although I have some fuzz on top, it looks like I’m suffering from male pattern baldness, with a ring of ever increasing dark fine fringe hair that circles my head.  I want someone to take a crayon and color in the top, so I’m not mistaken for a monk. Is her head back in the sand, you ask? I think so for the moment.

The Merry Month of May

This past week was a very hot and humid one for early June. Somehow we went from spring to summer in one giant leap.  May saw weather so cool that I pulled out a couple of the turtlenecks I had packed away for the summer. May also brought its share of very warm weather and several devastating storms to Missouri when warm moist air from the Gulf of Mexico collided with cold air coming from Canada. On May 22nd, a third of the city of Joplin, on the other side of the state, was obliterated by the deadliest single tornado in the United States in over 60 years. The images from the devastated area were surreal, with twisted stumps of trees stripped of their bark, debris strewn everywhere, and empty slabs of concrete where houses once stood. Although we managed to dodge that bullet, I did spend a couple of evenings in May hunkered down in my basement laundry room, with the tornado sirens sounding in the neighborhood. After the horror in Joplin, I take the need for cover even more seriously than before, taking medicines, money, and other items of importance down there with me.

May also brought other things – good things. On May 25th, I drove up to Barnes West for my final round of radiation. Before radiation, I had imagined it would feel like forever having to go for treatment every day, Monday through Friday for six weeks. In fact, the days just breezed by and were over before I knew it.  I was so fortunate, once again, to be spared the fatigue that many people suffer from the process.

During the first five weeks of treatment they radiated my whole right breast, first from one side and then from the other each day. For the final week they focused the treatment on the immediate area around where my tumor had been, in case there were any lingering, isolated cancer cells that had somehow managed to escape surgery and then the full force of chemotherapy. If there were such cells still there, then they were much hardier than the other fast growing cells in my body. The outer lining of my tongue and my hair follicles  seemed to roll over and die pretty quickly.

After six weeks of treatment, radiation left me looking like one side of my chest had been sent on vacation to a nude beach in Rio, while the other side looked as though it had spent the winter bundled up in Scandinavia.  Now, two and a half weeks later, my skin has faded to a light tan.  I’ve also started to peel.  I wish I had fond memories of that beach in Rio to blame for that!


So, on Wednesday, May 25th, the third stage of my treatment plan was completed. I did celebrate that evening with champagne, albeit a little later than planned. The 25th was another of those very stormy May evenings during which we relocated to the laundry room as the neighborhood sirens sounded. We waited to drink a toast until after the threat of tornadoes had passed. Now, all I have left in my personal cancer marathon are the herceptin infusions I will continue to receive every three weeks until November, and the aromatase inhibitors that I will take daily for the next five years. More milestones to celebrate, and more excuses for champagne as each one of those stages is completed!

Déjà vu

If you have ever seen the movie Groundhog Day with Bill Murray and Andie MacDowell, you will have a sense of how I’ve been feeling about the past 5½ weeks.  Since I started radiation therapy on April 14th, my life has become a series of days that resemble each other unremarkably in their sameness.

I get out of bed each weekday morning at about 7:20 and catch up on e-mail, eat a light breakfast, putter for a little bit and then suddenly look up at the clock, astonished to see that it is quickly nearing the time I should be leaving the house to go to the treatment center. I throw on clothes, sometimes without the time to iron them first, pull together a lunch, if I’m going to work that day, and bolt out the door for the 25 minute drive to treatment. I have gotten on the road in such a hurry several times that I have questioned whether, in my haste I locked the cat in a bedroom, or turned down the heat, and then I fret about it and try to decide whether to return home between radiation and work to check on things.  I have left my lunch behind on at least one occasion. Invariably, I just make it on time.  I scan my ID card, which lets the technicians know I have arrived, let myself into the treatment area, and zip into the women’s changing room, where I change my top for 2 hospital gowns: one open in the back, and the other one over it like a robe.  Then I wait in the lovely little sitting area, and turn the television channel to MSNBC (yes, one is allowed access to the remote in this semi-private waiting area.)  I catch up on some of the headlines and usually within short order one of the technicians comes to get me for my treatment.

The women's private waiting area

There is one cavernous radiation therapy room, staffed by five warm and wonderful technicians. The room, however, is not warm. It is kept chilly to compensate for the heat put out by running the very large linear accelerator, the machine that provides the doses of radiation. One of the technicians finds it so cold that she wears long underwear all year long! Despite the chill in the air, the hospital has gone to some effort to make the room relaxing, with music in the background, low lights, and a set of tropical beach lightshade panels over the table you lie on during treatment. The dim light also helps the staff as they use green laser beams that emanate from the ceiling and the walls to line patients up correctly with the accelerator. They also provide warmed sheets to cover you, but these tend to lose their heat very quickly. 

The treatment room with the linear accelerator

Every day, I enter the room, shed the outer robe, and climb onto the table. 

The treatment table

I slip my arms out of the other gown so the two technicians working with me that day can access my tattoos, which they use to line me up precisely with the machine. My arms go above my head into armrests so they are out of the way.  It’s not a position I’d care to assume for long.  The techs nearly always have to remind me to turn my head to the left, to move it as far from the radiation beams as possible. And, except for breathing I am not to move while being treated.

In position and ready for lift off

The view above me

Once I am properly situated, the technicians leave the room and the arm of the machine moves from above me to my left side, where it delivers a short burst of radiation. Then the arm moves up and over me to the right side, where it targets the tissue from a different angle.  It’s short and relatively simple.

For the first three weeks, there was not much change that I noticed.  Then one day, my treated skin turned a mottled pink.  A day or two later it was solidly pink, the color of a medium rare steak.  It has remained that color ever since, and is slightly tender, like my skin when it is sunburned.  Every night, I dutifully apply the steroid ointment the doctor prescribed and then the moisturizer they gave me. Every morning, I use a cotton ball like a mini powder puff to pat cornstarch on the affected skin to minimize friction.  

On Wednesdays, after treatment I have a brief meeting with my wonderful doctor, who comes in, shakes my hand, takes a look and tells me that everything looks great. Last Wednesday he also told me that my treatment would change for the last five sessions.  Instead of targeting the whole breast, the final treatments would focus on the area around where the tumor was.  That was a relief, as it meant that the reddest of the red part of the breast would be spared further radiation. 

So that sense of routine – of waking up every morning and marching forward steadily through the treatments and through the day every weekday for the past 5 weeks and 2 days has helped move the process along more quickly than I imagined it could. Now here I am, in the third week of May with only three more rounds of radiation left. Come Wednesday by noon, I will have another part of this marathon behind me.  I think another round of champagne will be in order!