By Christine Zgradic
Written while appearing healthy: August 20, 2011
Her 39th birthday: October 20, 2011
Her death: November 6, 2011
Editor’s Note
While sustaining the Manual of Clinical Oncology since 1984, I also maintain a solo private practice in hematology and medical oncology. The interactions and gab in the “chemo room” continue to be a major infrastructure for our treatments. As the 7th edition reached deadline, I was enchanted and entertained by the extraordinary conversations enacted on Wednesday afternoons.
The stars aligned. A pretty 39-year-old female high school teacher (CZ), who presented four years ago with liver metastases from colorectal cancer after she delivered her first born child (simultaneously with her mother who was diagnosed with the same condition) required ongoing chemotherapy. At the same time, an attractive, ebullient 36-year-old costume designer (JE) “deserved” dose-dense chemotherapy for high risk breast cancer. I was amazed by their interactions, particularly when they volunteered their sexual experiences with candor, humor, and no embarrassment or modification by my presence. I challenged them: “Write what you just said!”
I am pleased that the publishers allowed me to present the perspectives of a truly remarkable lady, the teacher. This genre of writing is not ordinarily found in medical textbooks. You have the privilege to experience her lessons. And, with its publication, she satisfied the last item on her “Bucket List”.
Dennis A. Casciato, Editor-in-Chief
1. Prepare to Be Dumped—Part I
This advice applies to all relationships. You must accept that people are afraid of cancer. Undoubtedly, when you start breaking the news to your family and close friends that you have been diagnosed with cancer and/or have started chemotherapy for cancer, they will tell you that they are sorry. Then they will look at your hairline to see if your hair has fallen out. Some will actually be rude enough to ask if your hair is your own.
But I digress. People genuinely are confused and do not know how to react, so some just walk away. I had a colleague whom I thought was a close friend (based on how much she told me about her personal life, even though I had never asked). Once she discovered that I had cancer, I never heard from her again. Wanting to give her the benefit of the doubt, I thought that perhaps she had had a previous negative experience in her life with someone who had gotten really sick? More likely she was just an insensitive and insincere person. After two attempts to e-mail her and getting no reply, I decided to scratch her off of my friends list and move on.
Do the same thing. You have so much to deal with that you do not need to be the one offering emotional support to someone who should be helping you deal with cancer. Dump and move on.
2. People Don’t REALLY Want to Know How You’re Feeling
Also be prepared to have people ask you, with sad eyes and what they think is a sympathetic look, how you are feeling. If you are honest, and start talking about weekly, five hour chemo sessions, lack of sleep, etc., you will begin to see panic deep in their eyes. They do not really want to know the horrors of what you are enduring; they just want to make themselves feel better by asking you how you feel.
Save your truthful answers for the friends who genuinely care for you and tell everyone else that you are managing just fine. If you can, say it with a smile. They will feel better and say you are amazing, and you won’t have to endure anyone being disingenuous. Same concept as dump and move on.
3. Allow Yourself to Grieve (with Caution)
Cancer is an invasive disease. Depending on the stage and the type of cancer, you may have at least a couple, if not multiple, surgeries. This changes the way you look and certainly confirms how you already feel about yourself: you are weird, you are ugly, you are a total freak with scars all over your body; no one will ever want to look at you again or be with you again because you are the weirdo.
Perhaps you no longer have hair. Maybe you now have an ostomy. You certainly are always the one leaving the dinner table the most frequently at a party or telling the driver to pull over because you have a major bathroom emergency.
Remember all those deep rooted childhood and teenage insecurities? You are the geek with the headgear. You are the lame ass that ruins the parties. Yup, you’re it. That is how you will feel regardless of how much people tell they love you (and many do).
Again, allow yourself to grieve. Your life truly has changed permanently. However, in the subtitle I mentioned to grieve with caution. Do not let yourself grieve for too long, or else you risk becoming truly depressed and having to take anti-depression medication, among other things.
I have been lucky enough never to have taken that route, but I do remember my absolute lowest point during this ongoing medical adventure. I was undergoing radiation and very light chemo early on in the treatment, but was still recovering from extensive surgery. I absolutely hated my body image, and my marriage was falling apart. One night I left the baby at home with my then husband and went to a football game at the high school where I teach to sit on the gym steps with my best friend and just let it all out.
I was petrified that I would never be able to work again; that I was not being the mother whom I had always wanted to be; that my husband was making it so clear that I was not the woman he had originally married; that I was disappointing everyone, but mostly myself because I had become such a useless being. My BFF, of course, consoled me, but I still couldn’t shake the feeling.
A couple of days later, I texted another friend who had been in the armed forces. I told him how desperate I was feeling and that I wished that it had just all ended so that I wouldn’t have had to go through this torture. What did I get in return? Some really tough love! He told me about some of his experiences in Iraq and that guys he had known there had “come back with no arms and couldn’t hold their children.” Another guy came back blind and will never be able to see his children.
“You can do all of that. Your daughter is the most important person in all of this,” he said.
I was essentially told to stop whining, pull it together, and take care of my daughter, Francesca. He may not remember what he told me that day, but it stayed with me, and clearly, I think about it often. I do believe my instinct was always such, as Francesca is the center of my universe, but I am forever grateful for his helping me put things in perspective. It is all perspective.
Because it so easy to get mired in feeling sorry for yourself, learn how to strike a balance between your low points and enjoying yourself. Personally, I am a relentless planner (Seven Habits, anyone?), and plan social arrangements for days when I know that I will need company. These are not elegant soirees; these are lunches with girlfriends, play dates for my daughter, and sometimes something as simple as a girlfriend coming over with Starbucks mochas and chatting on the couch about anything that has NOTHING to do with cancer. Once you have been on chemo for a few weeks, you will know how it makes you feel and when to have company, versus when to have some downtime all by yourself. Your true friends will make time to see you.
4. Makeup is Your New Best Friend
Makeup always has fascinated me. I had never realized how much until my sister found one of my childhood dolls at my parents’ house. I had applied eye shadow to the doll’s lids (she had closing eyes) and I still remember being frustrated that her lipstick wouldn’t stick. One’s tastes are defined early.
I have become obsessed with any and all sorts of beauty products. I have six different shampoos and three different conditioners. Since chemo affects your body chemistry, you are dry as a bone on some days and just a greasy mess on other days. To that end, I also have multiple facial cleansers, serums for my skin, along with eye cream, lash serum, and - - let’s not even start on the makeup. Every time my father visits, he laughs and tells me that my bathroom looks like the cosmetics section of a department store. Well, yeah, he’s right.
This applies directly to points 1 and 2 above. Not only are people uncomfortable with your actually being sick, but looking sick on top of it is what makes them downright squirmy. You will want to look as normal as possible. My obsession with cosmetics has made it so that most people never guess that I have cancer or am undergoing chemo unless I tell them. That being said, I have the most fantastic team of women at the salon that I frequent; they make me look my best. I could never have asked for more sympathetic women, who keep my hair, skin and eyebrows all in check and me looking “normal.”
You may not share the same obsession with cosmetics as I do, but now is the time to take care of yourself, more than you ever have before. If your immune system permits, take care of your hair, get facials, massages, and mani/pedis. The side effects of chemo will warrant taking extra care of yourself, so budget for it, and just do it. Looking at your pink or red toes after a pedi will do wonders for how you feel about yourself (and hey, the ultra hot lover [see below] will probably like them too).
5. Prepare to Be Dumped—Part 2; or, How to Fend off Ridiculously Rude Sexual Advances that Lead Nowhere
Cancer brings out bizarre reactions in men towards women who have cancer. My experience has been quite rich in this field. I group their behaviors to describe three types of men: the Runner, the Sympathy Jerk, and the White Knight.
Some men become Runners; quite sadly this is often the case. They simply don’t know how to deal with your illness and become workaholics, have an affair, or leave you. The worst of them actually hit the trifecta and do all three. Research shows that divorce rates among cancer patients are not necessarily higher than in the general population, but the caveat is that if the woman gets sick, the husband leaves his wife. Not so much with wives leaving husbands.
The Sympathy Jerk is a different scenario altogether. He has already had someone in his life who has dealt with cancer, usually his mother. Therefore, he will approach with what seems like genuine concern about your health, asking how you are feeling, how your treatments are going, etc. Then, he will start asking personal questions about your love/sex life, and ultimately will offer to go to bed with you because you are so wonderful and are his “hero” for going through all of this so bravely.
I admit that I have gotten this offer a number of times, and here is an example of what the offer will sound like: “When I first met you, I thought you were one of the most attractive women I had ever met and really wanted to ask you out. But then I found out that you had cancer, and wasn’t sure that I could handle that. But I still think you are really attractive and would love to go to bed with you anyway. So if you ever want to f***, let me know!!”
He really believes that he is being altruistic when he offers this to you. What Sympathy Jerk doesn’t realize is that he has just said one of the most offensive things you could say to a person with cancer: that you aren’t a whole enough person for him to take a leap of faith and start a relationship with you; you are only good enough for an occasional lay until he finds someone better and healthier.
Sympathy Jerk, as far as I can tell, is also delusional in his confidence about his lovemaking skills. Perhaps he thinks that I will die in a state of euphoria during the lovemaking session, thereby sparing me the pain of death from the actual cancer. It’s pretty clear that he thinks that having sex with him will satisfy me until the day I do actually die (dream on, buddy). Guys like this are out there in droves. Try not to get too offended or hurt. Laugh it off with a girlfriend over a drink if you can, and turn it into a great story instead. Dump and move on!
Lastly, the White Knight is all of the things Sympathy jerk is, except that his offer is not as rude. His offer usually at least includes some kind of meal (pizza or some other guy food) before the life-saving sex bit. This guy thinks that he can actually save you. He will boast of his caretaking skills and how he “knows how people with cancer suffer.” He will tell you about his mother (who had cancer). But don’t be fooled! White Knight is after exactly the same thing as Sympathy Jerk.
Frankly, if you really have a breakdown and have to have sex, choose the Runner. At least you will have known in advance what you were getting into and your feelings won’t be hurt.
That being said, my next piece of advice is:
6. Get a Really Hot Lover
At a certain point, you will have an epiphany and realize that this cancer thing is really pretty serious, and maybe you should start scratching some things off your Bucket List. Although you will have negative encounters with Runners, Sympathy Jerks and White Knights, you will occasionally meet a genuinely cool guy whom you REALLY want to have sex with. Remember that friend whom you always secretly thought was hot, shows up in your dreams and fantasies, and mildly flirts with you sometimes? Do some serious background checking and then GO FOR IT.
This tack has to be approached carefully so that it doesn’t sound desperate. You don’t want to turn him into a future Sympathy Jerk for other women, so tread lightly. But really, you won’t get turned down. Men fantasize about our asking them to bed. Can you imagine the ego boost a guy will get if you tell him that HE is the one you want to make love with before you DIE!?!?
There is no way you can fail. You will have to explain about your weirdness, whatever form that may have taken, but he won’t be listening to details anymore. He just knows that he’s got a sure thing. Background checking comes first. Here is what you need to do:
• Preferably this man is a true friend whom you have always in some way cared for—you have just decided to act on the fantasy. Should anything get awkward, you can easily laugh and start over. Make sure that trust and respect are mutual so that if things do get awkward, it will not end up on Facebook (by either party). Have a sincere, private conversation about your intentions (not at Starbucks or a restaurant!). He may be taken by surprise. It may be one of the most difficult things you ever do because as you open yourself up to rejection. But try it. At least once.
• Think of your immune system first. If you are lucky enough to have an oncologist and oncology nurse like mine, no question is off limits. I fretted for a while about wanting to have sex with someone I found really attractive. Both doc and my chemo nurse said that physical contact is healthy, and that I should go have fun as long as I didn’t do anything to hurt myself. Find someone who is not a player. No moment of sex is worth that. Choose carefully and wisely.
• When the actual moment arrives, keep it fun and light. Although you will be insanely nervous about the whole thing, just go with it. I can say from experience that any anticipation you may feel about scars or chemo ports, if the guy is really nice, he will not make you feel awkward. Guys are pretty good at following precise directions. If you tell him to avoid a body area because it is a bit uncomfortable, he will follow your instructions.
Once you get through the first session, then you can start to REALLY have fun! Remember that this is all new and you can do anything you want because you have cancer!! No one will say “No” to what you want to do.
Sexy lingerie? Go out and buy what makes you feel sexy for your nights of adventure. Those kama sutra positions you want to try? He will say yes—I promise (I have never had a man tell me that he won’t have sex any other way than missionary). Sex toys? Yes. Acting out fantasies? Yes.
Under these circumstances, sex truly becomes an out-of-body experience and, I believe, a form of coping and healing. Depending on the type of chemo you get, you may or may not be up to crazy sex on the day of treatment. But, if you can, oh my, are you in for a treat. Chemotherapy drugs are incredibly strong, and do leave you in an altered state (particularly the steroid that is given to prevent nausea and vomiting). Or, as my chemo buddy girlfriend [J.E.] put it, “That is some f***ed up s*** you give us”.
Honestly, sex after chemo is sex while being stoned. And it is good. The steroids in mine make me hyper and unable to sleep. Thusly, my reaction to an orgasm while on chemo steroids is “Let’s do that AGAIN.” Your lover will oblige.
When chemo sex is with someone you know and trust, that person will make you feel sexy, desirable, and whole again. In those intimate moments, your body feels more alive than it ever has before. You forget that you are sick and have scars everywhere. You are transported into another place. Sex is a basic human need and chemo sex gives you the connection that is so often desperately lacking with someone who is ill. Take advantage of every sex opportunity you can and enjoy yourself !
That being said, there is one tremendously important rule about this type of relationship: Do not get emotionally over-involved because it will end. He will eventually find someone else. In my case, I know that I have terminal cancer. There is really nothing that can be done about it anymore but keep up the chemo treatments. While I relish having sex with my ultra hot lover, I know that there is no white dress for me at the end of the movie. I am painfully aware at times that I can offer him neither a long future together nor a family created together.
I am not sure that I even want to try that at this juncture in my life. I am also taking him into consideration when I think this through. Why? Because he is young, beautiful, and intelligent and should be able to pursue the dream that we all have with a happy ending. I am lucky enough to genuinely enjoy the time I do spend with him and he will forever hold a most special place in my heart for what he has done for me emotionally, physically, and psychologically. Even if the sex eventually ends, I know I have a friend for life.
7. Have an Anthem
Music has always played a very important role in my life. I cannot drive for 2 minutes in silence. I must have music playing. I remember times and places based on songs that were popular at those moments, and especially the songs that I most loved during my pregnancy (perhaps this is a hormonal issue). Music has helped me get through some of the most emotional periods of my life, including the birth of Francesca, the death of my mother shortly thereafter, my divorce, and certainly all of my cancer crap.
Those amazing artists just keep coming up with ways to say what I am thinking in ways that make me want to sing along! While I have endless songs that keep me entertained, cheerful, and downright silly sometimes, one song has carried me through this entire experience and of which I will never tire. If I am down because of the cancer, I find it uplifting. If I need a pick-me-up or some perspective on life, this song makes sense to me. The song is “Even If It Kills Me” by Motion City Soundtrack. It is the title track off the album of a band that has not yet made it to the major airwaves. The song encapsulates everything about dealing with cancer.
It doesn’t matter if your anthem is country, folk, rockabilly, opera, or gangsta rap. You will one day find a song that gets you through this ordeal because it so perfectly explains how you feel. Once you find your song, rock it! I sing mine in the car, dance to it in my apartment (usually while on chemo steroids), and occasionally get weepy with it. As far as I am concerned, the band wrote “Even If It Kills Me” for ME (and no, I do not know them). This is actually a love song, but written for me alone.
8. The Silver Lining: Your Support System
The one good thing about cancer is that it will introduce you to people whom you never thought you would meet and who would also renew your faith in the human race. Doctors, nurses, and true friends will emerge and will make you realize that true medicine is a calling, not a paycheck.
You will also discover who your true friends really are and, trust me, you do have some. As most men become Runners, your true friends are your girlfriends. I had always enjoyed the company of men better for their sincerity, clarity and logic. I still love men but have come to realize how more important women are as friends. They are the ones who will bring over the Starbucks or dinner when you are helpless; they will help watch your child(ren) if you don’t feel well; they will offer to do your laundry. Anything and everything is what they will do, if you ask, and will never make you feel like you owe them anything. I can count on one hand the number of my true girlfriends and am occasionally amazed at how lucky and blessed I am to have these women in my life. Believe me, I was not much fun to be around at the beginning stages of this adventure. But, they have remained my friends through the worst part of my life and now we can actually start doing fun things again. I have one treasured story about each one. I love them.
The TRUE WHITE KNIGHT: If you are REALLY lucky, you will have a True White Knight in your life. In my case, he is a colleague from work. I never imagined that I would get to know him as he is a “big man on campus,” but circumstances put us together at work. He is one of the most genuine and generous people I know. How do I know that he is a True White Knight? We spend time together at work and I can pester him with any question. Work conversations turned into social time together. He has never let me pay for one meal; not one. Nor, for the fees at the shooting range; he taught me how to shoot (one of the things on my Bucket List).
He is my True White Knight for many reasons. Here is just one reason why. I have somewhat of a busy schedule as a teacher, mother, and woman undergoing chemotherapy. My particular cancer makes me subject to fevers due to recurring infections. Most of the time I know how to deal with these detours, but sometimes it hits me out of the blue. In this one particular instance, boy, it did hit me out of the blue!
I awakened one morning feeling a bit off, but had to go grocery shopping; I pushed myself to do that. I started feeling really unwell in the store, but finished the checkout, got home, put all the groceries away, and lay down. By that time, my temperature reached 104°. A call to my doctor was answered with: “Get to my office NOW”. I called my True White Knight and explained the circumstances. He said he would be there in less than 10 minutes. He arrived in 6 minutes. He took me to my doctor’s office, waited for me, and then drove me to the emergency room as that was the best place for me at that moment.
It took over 2 hours to be admitted to the hospital. He waited with me even though I kept telling him that I was ruining his day and he should go (a practiced routine for me). His reply? As a friend, his responsibility did not end until I was safely in a hospital bed. Even better? I was stuck in the hospital for three days, relatively healthy, but on massive antibiotics with an IV sticking out of the port in my chest. He showed up every night to keep me company after dinner to “shoot the s***”. Amazing!
No, he is not my Ultra Hot Lover. In fact, he is madly in love with his new fiancé. I am sure that she knows how lucky she is. If she ever needs a reminder, I will quickly share this story with her.
9. Perspective
My last thought is about perspective. For me, cancer was the reason for a massive change in my world perspective. I had been unhappy in my marriage for some time. I had been thinking about leaving my husband, but didn’t have the willpower to do so until I was diagnosed with cancer. With that diagnosis, life and/or the cosmos served up what I call the “never ending s*** platter”.
In the fog of coping with a newborn child, my diagnosis of metastatic cancer, and the death of my mother from the same cancer, I realized that if I did not take my life into my own hands and start living the way I wanted to, my life would literally end. With tremendous help from my “support system”, I was given the encouragement that I needed and found the willpower to transform my life (thank you again, Seven Habits). That is a story for another time.
Try to look at this diagnosis as a massive wake up call. If the cancer has been caught in time, you can recover, or just function, for some time and enjoy what life is supposed to be. Become the person you always wanted to be and create the life you always wanted, with no apologies.
But, of course, play nice. I, personally, am off to text my ultra hot lover and ask for a crazy postchemo sex session.