Intimacy After Breast Cancer

I just spent the entire day at a Breast Cancer Issues Conference in Portland Oregon and one of the three sessions I attended addressed the topic of Intimacy After Breast Cancer.

When I arrived at the Conference I considered substituting that session for Long-Term Side Effects of Chemotherapy and Radiation because I thought the one on Intimacy wasn’t applicable since 1) I currently don’t have a partner and 2) I really don’t care if I have sex.

But I attended anyway and I’m glad that I did. Dana Rowett, speaker, and co-author of the book, Intimacy After Cancer: A Woman's Guide was both informative and humorous.

Ms. Rowett talked mostly about how to communicate with your partner before you have sex, which positions are best, and how to increase your libido and your energy so that you’ll enjoy sex more.

She also stressed the importance of “using it or losing it.” We all know that sex keeps us young. Besides being fun and great exercise, it gets the hormones flowing, which is good for our skin, hair and muscle tone. And it prevents vaginal atrophy (yikes). For those of us who have had chemotherapy (me), or radiation to the cervix or vagina (not me), Ms. Rowett suggested using vaginal dilators if our vaginas have decreased in diameter. I know what the men are thinking right about now, “Hey, but wait a minute…”

The truth is that sex after breast cancer treatment can be very painful (hopefully I’ll get a chance to find out) because the vaginal tissue is thinner and can easily tear if not properly lubed, and the vagina might be too small to accommodate anything larger than a piece of cooked spaghetti. Darn! I just gave away all of my pasta last week when I started my low-fat diet. Anyway, Ms. Rowett said that the dilators help prepare you for sex, should the desire ever return. Well, I certainly wanted to be ready, just in case.

With a big smile on my face, I walked out of the room at the end of the session waving my free samples of Astroglide and Replens-- ready to take on the world (well, maybe not the whole world).

During the break, my first stop in the breast cancer exhibit hall was the sex toy booth, followed by the fly-fishing booth. The toy rep showed me the dilator kit, which cost $99.00 and included 6 different sizes in six different colors. I told her that I wasn’t really interested in the extra-mini-size or the elephant-size— that one in a medium size would probably be fine. Then I asked her how I would know if my vagina had decreased in size since I hadn’t had sex in a while and didn’t have any prospects to test drive it. She said, “Let me show you my Intimate Collection Party Catalog.” After not too much thought, I decided to throw my fate to the wind—to leave it once again to chance. I will just wait until the right person comes along and see what happens.

I left the booth empty-handed, but not entirely disappointed.

I ended up registering for a fly-fishing trip to Central Oregon. It’s been almost 13 years since I’ve used my fly rod and gear. Hopefully, my Neoprene waders and felt-bottom boots haven’t split or dried out from lack of use.

Don't tell you date you had breast cancer (until you're ready)

Chemotherapy not only does a number on your body, it also jumbles your perception of the world around you. As you start to assess the cumulative side-effects of the chemo drugs and the radiation therapy, trust becomes a significant factor.

While I was healing from breast cancer treatment at a friend’s house in Palm Desert California I hooked up with a former classmate of mine. I didn’t really know him in high school because he was a year ahead of me and we hung out in different circles. He found me through classmates.com a couple of years ago and since then we’ve kept in touch via email every few months or so.

When we found that we shared a love for travel we thought it might be fun to meet up on one of our trips, should we happen to be in the same country at the same time. Since it looked like that was never going to happen, he asked me to call him if and when I decided to visit San Diego.

I called him a month after I arrived in Palm Desert and we made plans to meet at a wonderful French restaurant in Indian Wells that a friend of his suggested. I was a little nervous because it would be our first meeting and he didn’t (and doesn’t) know what I had been going through the past year. Luckily he emailed a current photo of himself because I certainly wouldn’t have recognized him from his yearbook photo. Yes, I sent him a current photo of me too.

Well, we hit it off and ended up closing down the restaurant after a wonderful meal and two hours of nonstop talking (actually he did most of the talking). I didn’t want to tell him that I pretty much stopped drinking alcohol when I was diagnosed with breast cancer, so we shared a bottle of wine with dinner and sipped cognac with dessert.

For the next four months, he continued to make the 2 ½ hour drive from San Diego to see me every two-three weeks or so. He usually stayed for 3-5 days at a nearby hotel. We had a great time sight-seeing, watching the latest independent films at the Palm d-Ore and catching up with our lives.

The most difficult thing for me during that time was dealing with my wig in the scorching desert summer heat. About the only time I wore the wig was when he visited. The rest of the time I wore my new short artsy Palm Desert hairstyle that blended in with all of the other desert boomers.

One 115-degree August Saturday we walked through the Living Desert Zoo & Gardens and I thought I was going to pass out from heat exhaustion. My wig was uncomfortably hot and my new fashionable straw hat didn’t help much. Sweat was dripping down my forehead and running down the back of my neck, but I wasn’t about to take the wig off--- not yet. It got to be a game of sorts--- to see how long I could continue the charade before he figured it out.

Another time he asked me to join him for a swim in his hotel pool, but I told him that I couldn’t get my head wet because I had suffered a painful earache a couple of days before (true). To escape the unbearable heat I did a lot of sitting and standing in the shallow end and dog-paddled across the deep end. Luckily, my wig stayed completely dry.

We hiked along the trails at the top of the Palm Springs tram, walked around the rock formations in Joshua Tree National Park, meandered through a botanical garden and browsed through the quaint shops in Idyllwild.

Even though we spent several days and evenings together I always managed to avoid telling him that I was healing from breast cancer and that the hair that he thought was so beautiful was not growing out of my head.


Toward the end of my stay I almost confided in him because it was getting harder to wear the wig without constantly tucking in little stray hairs that kept creeping out and I was beginning to feel a little dishonest. I was also terrified that he might want to run his fingers through my hair or brush my bangs away from my face, so I kept my icy distance.


I remembered the advice a cancer survivor gave me. “You don’t have to tell the world, your date or anyone for that matter, that you have had breast cancer. It’s nobody’s business. When the time is right you’ll know it.”

Maybe it’s because I don’t trust him enough to keep it to himself. He does like to talk so there’s a good chance my secret might accidentally slip out to other former classmates. Or maybe I’m afraid of rejection—that he wouldn’t want to hang around me so much if he knew I was damaged—that a little piece of what makes me a woman is missing and that the brunette with the long straight bob that he was enamored with actually has extremely short (1/2") wavy hair—that the times he thought I was being indifferent or melancholy were neither—that I was just tired and still feeling the effects of the chemo and radiation.

I decided when we first met that I would tell him about the breast cancer, should our relationship progress to the point that we became more than friends. In the meantime, I’m making sure that it doesn’t. So far he seems satisfied with the status-quo. Perhaps there is something he’s not telling me.

What would you do?

Breast Cancer and Needles

One of the most unpleasant things about having been diagnosed with cancer, besides the obvious, was the number of times I was poked with needles throughout the treatment period. First the blood tests, then the needle core biopsy, the vaccinations, the IVs, the self-injected Neupogen and then more blood tests.

The needle core biopsy was the least fun. The radiologist shot a hollow needle into the tumor at least six times from some type of needle gun (like a nail gun). Cores of tissue samples were extracted from the tumor to be sent to the lab for analysis. Even though the radiologist numbed the area first, it was still painful. In fact, it’s been over a year since the biopsy and my breast is still tender.

When the results of the biopsy came in surgery was immediately scheduled to remove the tumor, which meant more blood tests, a flu shot plus a pneumonia vaccine.

The day of surgery an IV needle was placed in my vein and another needle was used to inject a radioactive dye in my breast for the sentinel node biopsy. The hospital staff kept me supplied with warm blankets and gave me lots of attention. Just before surgery the nurse ran something through the IV to relax me. I felt pretty good by the time I was wheeled into the large white operating room.

After waking up in the recovery room I had to wait for a couple of hours until the anesthesia wore off before I was released. At home the next few days I experienced headaches from the anesthesia, but otherwise I felt great.

A couple of weeks later I was feeling very optimistic while I was waiting for the results of the biopsy. When my surgeon, Dr. Carmen Hudson, walked in with a serious look on her face and asked me if someone had accompanied me to my appointment, I knew something was up.

She first apologized for not getting a clear margin when she removed the tumor and informed me that I would need another operation that would involve removing my areola and nipple. I told her that it was only decorative anyway since I'm not planning to have any more children. She laughed and then got serious again. She said, "I'm so sorry. The biopsy revealed a microscopic amount of malignant cells in one of your lymph nodes."

“Does this mean that I’ll have to have chemotherapy?"

She said, "Yes, most likely." She told me that the standard course of action was to also remove the remaining underarm lymph nodes for further examination to make sure that they were cancer free. However, she said that she didn’t think it was necessary since the malignant cells in the sentinel node were microscopic in size and the other two nodes were cancer free.

In my research, I read that often times malignant cells found in the sentinel node, especially if microscopic, can travel there via the needle during a needle core biopsy. I also knew that chemotherapy was usually recommended if cancer traveled too far from its point of origin.

More blood tests, another IV, more needles.

This time, I requested a twilight anesthesia instead of a general because the general took too long to wear off. Dr. Hudson scheduled the "clean-up" surgery (her words) in Kaiser’s out-patient clinic at St. Vincent’s hospital, instead of the main operating room.

Similar surgery, but without the frills. My next pre-surgery room consisted of a bed with drapes on a track for privacy in a barracks-like room.

My nurse anesthetist was a short, stocky, very mature German woman who spoke with a thick accent. Earlier, Diane spotted her in the hallway pounding on a door saying, “Open ze door. I need drugs NOW!” We later figured that she was really a closet comedian, using her demeanor to entertain the patients.

After I was given something to relax me (another needle) my nurse anesthetist told me to walk to the operating room. When I asked, “Aren’t you going to wheel me in?” She said,“Nope, you can still valk, can’t you? So get goingk and HURRY. Ze docta est r-r-r-ready.” It was like a scene from a Frankenstein movie. I wondered if I had made the right decision and started to miss the all of the attention I got at the main hospital.

I walked to the operating room and climbed up onto the table. A nurse hooked me up to an IV and I slept through most of the surgery, only waking up once to comment on the beautiful butterflies flying around the operating room.

I woke up again in the recovery room, which was the same "room" I was in prior to surgery. As soon as my eyes opened Dr. Hudson released me and Diane drove me home.

A month later and a couple of days before my first chemotherapy treatment, I had more blood tests and the oncology nurse weighed me to determine the maximum amount of poison my body could handle.

The chemotherapy regimen my oncologist ordered for me was Dose Dense ACT. One of the greatest benefits of the Dose Dense ACT regimen is that it’s given over the course of four months instead of the usual six. This reduces the chances of side-effects, primarily cardiovascular damage. The dosage is given every two weeks rather than every three.

Since two weeks isn’t enough time for white blood cells to regenerate enough to be in the safe range, I had to give myself injections of Neupogen for several consecutive days beginning a few days after my chemotherapy treatment because it was during this time that my immune system was its lowest.

Before each chemotherapy treatment, I had to have a blood test to make sure that my white blood cell count was high enough to proceed with the chemotherapy.

The day of my first chemotherapy treatment I opted to have the chemo cocktail delivered via a vein on the back of my left hand rather than having a port installed in my chest. The ports can sometimes cause infections.

Minutes before my first chemotherapy treatment I was given steroids to help me tolerate the chemo drugs. It caused my legs to be restless and I couldn't lie still, so I was given another drug to counteract the first one.

The nurse found a good vein right away and inserted the IV needle. She set the chemo drip to enter my vein slowly so that it would be easy to stop, should I experience a bad reaction to the drugs. It went smoothly and so I scheduled another appointment.

Before they released me I was given some anti-nausea medication, which didn't help me keep down the rich sauce-laden French food that I ate following the chemotherapy treatment.

A few nights later I had to start the Neupogen injections and asked my sister, Diane, and son, Lance, to watch, to make sure that I did it correctly. I took the Neupogen out of the refrigerator 30 minutes prior to injecting the drug and filled a disposable syringe after the Neupogen warmed up. I pushed the air out of the syringe, sterilized my chosen entry site with alcohol and held my breath. Pinching the fatty skin between my thumb and fingers, I inserted the needle at a 45-degree angle, then slowly pushed the plunger of the syringe until the Neupogen disappeared.

The little fatty ring around my waist was my first point of entry... and second... and third, but when I began to worry about the possibility of hitting a vital organ, I switched to a new site... my not-so-fat thighs.

During my second chemotherapy treatment, I was assigned a different nurse. After two failed attempts to insert the IV needle properly and causing a vein to collapse, I asked for another nurse, which I continued to do for each of the remaining chemotherapy treatments.

During the Taxol stage of the chemo treatment, I came down with pneumonia, despite the vaccination, and had to have more blood tests, plus an x–ray of my chest, and a prescription for antibiotics. When the bottle of antibiotics was empty I had another blood test to make sure that my immune system was strong enough for more chemo.

I still can't stand the sight of a needle, but compared to chemotherapy, an occasional blood test is a piece of cake. The Neupogen injections were inconvenient but necessary to keep my white blood cell count up. I imagine that from now on needles will always be a part of my life (at least for routine blood tests), like it or not.

Books to help you through Breast Cancer

When I was first diagnosed with breast cancer I did extensive online research and read every book about breast cancer that I could get my hands on. Some books were more helpful than others and I would recommend them to anyone who has ever been diagnosed with breast cancer.

In addition to late-night Google searches, the following four books supplied me with the facts I needed to help make informed decisions throughout my breast cancer treatment. Probably the most important one is Dr. Susan Love's Breast Book. This reference book is an encyclopedia of information that you will want to keep forever.

The next reference book that was a big help to me is Breast Cancer for Dummies. This easy-to-read book uses a direct approach to feed you factual information. If you're in denial this book will help set you straight.

Another book I found helpful is Breast Cancer Survival Manual: A Step-by-Step Guide for the Woman With Newly Diagnosed Breast Cancer.

And finally, After Breast Cancer: A Common-Sense Guide to Life After Treatment is very important because after the surgery, the chemotherapy, and the radiation your life will change. This book will help you through those changes.

If you can only afford one right now, I would start with Dr. Love's book. Your local library may also have a copy.

To make it easy for you, I've included direct links to Amazon.com, because they have the cheapest prices I've found.

Dr. Susan Love's Breast Book (A Merloyd Lawrence Book)

Breast Cancer For Dummies

The Breast Cancer Survival Manual, Fifth Edition: A Step-by-Step Guide for Women with Newly Diagnosed Breast Cancer

After Breast Cancer: A Common-Sense Guide to Life After Treatment

                
                                         

Is it a chemotherapy-induced heart attack or just gas?

Halfway into my chemotherapy treatments I had a real scare. My granddaughters, Opal and Violet, were visiting as they usually do on Friday nights. We had just finished eating dinner and were getting ready to watch a movie on TV when all of a sudden I felt a sharp pain in the center of my chest. It went away after a few seconds, but came back whenever I bent over.

I called the Kaiser Oncology department and the after-hours nurse told me to hang up and call 911 immediately. When the operator answered she told me to stay on the phone until help arrived and to have my granddaughters turn the lights on and off rapidly and continuously so that the paramedics could find my apartment without delay.

I could see that Opal and Violet were frightened. I told them what was happening and not to worry—that it was probably nothing, but the doctor just wanted to make sure.

Within minutes 6 handsome men in uniform were in my living room taking vitals, administering oxygen, and hooking me up to an IV. The paramedics said that my granddaughters could not ride in the ambulance with me, so I called my friend, Seamus, to come over and watch the girls. One of the firemen offered to stay with the girls until Seamus arrived (talk about great service).

It was a busy night at the hospitals. Kaiser and St. Vincent’s hospitals were both full and so I was diverted to a hospital in nearby Tualatin.

The tests turned out fine and it wasn't a heart attack, but gas, most likely caused from the mocha chocolate freeze I drank earlier in the day. I’m not used to drinking caffeinated drinks, so I may have had a strong reaction to it. The attending ER nurse told me that the hospital he worked at previously gave their cardiac ER patients anti-acid tablets upon admission to rule out the possibility of gas before they started any extensive cardio testing. He said that the symptoms can be the same.

When I returned home my son and granddaughters were very happy to see me and started laughing when I told them my chest pains turned out to be just gas.

Tragic or near-tragic events can be the fodder for a creative mind. Opal wrote the following poem about her experience that night:

Grandma Scare

The sky turns black
I turned on the TV looking for a movie and find it!
Garfield 2 and the Tail of Two KittiesThe movie started
20 min. and grandma calls 9-1-1 why
I turned around
My heart starts to pound
I see her aching
I flickered the lights
My sister helping

The ambulance came
They did tests
My sister and I are shaking in fear
Then her friend came to watch us
While my grandma goes to the hospital
I watched the rest of the movie in fear
When she came back
I was happy
And it was all from caffeine
My dad came and the day ended.

Opal Dillard, Grade 5

Opal’s poem was published in a book containing the poems of select young poets from elementary schools throughout the west.

That night was a scare for us all, but fortunately it had a happy ending. My tip to those of you who are experiencing any chest pains is to call 9-1-1 immediately, even if you think the pains are caused from gas. Every second counts if it turns out to be more than just gas. Heart attacks can be a side-effect of chemotherapy, so you should always be concerned if you experience any pains out of the ordinary.

If you have neuropathy from chemotherapy try Earth shoes

A possible side-effect of chemotherapy is peripheral neuropathy. One of the symptoms is numbness or tingling of the hands and/or feet, most commonly affecting the fingers and toes. The neuropathy may diminish or even disappear completely after several months, but for some it may last forever. Individuals at greatest risk of peripheral neuropathy are those who have preexisting peripheral neuropathy from diabetes, alcoholism, severe malnutrition or previous chemotherapy.

My symptoms included numbness and tingling in my big toes. It may seem slight, but the neuropathy prevented me from wearing closed-toed shoes. Any pressure on my toes caused from pushing my feet forward, sent me through the roof. I tried some athletic shoes in a size bigger than I normally wear, but even that didn’t help. I wasn’t able to wear the shoes without experiencing some discomfort.

Fortunately, I could wear open-toed shoes in Palm Desert where I would spend the next 5 months. I started out wearing sandals on my early morning walks, but really needed a shoe with more support.

It was during my first visit to Idyllwild that I discovered the Earth shoe. Remember the Earth shoe from the 1970’s? Well, it’s made a comeback and is now available in several different styles. One of the company’s marketing tactics is to display posters showing several well-known celebrities who wear Earth shoes. I guess the message is to make you feel “cool” when you wear them, instead of like a “hippy” or “earth muffin.” I imagine that with all of the baby boomers turning 60+ the Earth shoe will become more popular than ever.

The charming owner of the Idyllwild shoe shop was a very knowledgeable retired Podiatrist from England. When I watched how he treated his customers, I knew I had come to the right place. After he slipped the Earth Shoes onto my feet I didn’t want to take them off, they were so comfortable. With the negative heel technology, there was no pressure on my toes. My posture also improved because the shoes forced my body into proper alignment.

I ended up buying some open-toe sandals like Earth Origins Women's Sedona Brown Sophie 7 B(M) US and some comfortable walking shoes similar to Earth Shoes Rocket - Womens

and some closed-toe clog-like shoes Kalso Earth Shoe Women's Black Patent Solar 8 B(M) US for Oregon. Now I find it hard to wear any other type of shoe, even though my neuropathy has diminished.
                                    

My tip to others who suffer from peripheral neuropathy is to at least try Earth shoes. They take a little getting used to because the heel bed is lower than the toe bed, which forces you to stand more erect. Even if you don't have neuropathy, the Earth shoes can help prevent foot problems and are great for people who have to stand on their feet all day: nurses, doctors, teachers, waiters, chefs, etc.

Bring The Rolling Stones to Chemo

My therapist and other breast cancer survivors told me that it helps to meditate and to practice visualization or guided imagery during chemotherapy treatments. I was also told that acupuncture helps, as does aromatherapy, wearing certain healing gemstones and listening to soft healing music.

I tried everything and do you know what helped the most? The Rolling Stones.

Guided imagery was soothing, but my impatient mind kept wandering. I did bring healing gems with me to chemo, but always had trouble finding them because they were usually buried in the bottom of my bag somewhere. Acupuncture wasn't possible because Kaiser no longer allowed acupuncturists in the chemo treatment room as they took up too much space—space that was needed for more chemo beds.

When I first entered the treatment room and saw all of the older patients (where were the young ones?) lying on beds and sitting on reclining chairs, hooked up to chemo drip bags and staring off into space, I wanted to rebel. I certainly wasn’t as old or as sick as they all appeared to be.

Nope, no soft meditative elevator music for me. I wanted the Stones. It was my form of meditation. It carried me back to The Rolling Stones - Bridges to Babylon tour that I attended at the Seattle Kingdome with my cute date, Clackamas County Sheriff’s detective, Tom.

Tom was a classy cop who wore custom-tailored clothes from England, drove his BMW way too fast and liked Bombay Sapphire martinis with a twist. He also played the bagpipes in a national police piper band and did a tour of duty in Iraq with his National Guard unit.

When we arrived in Seattle I changed into my Rolling Stones concert clothes-- a short black leather skirt, black leather boots and an animal print top. Tom took one look at me and said, “Wow, I didn’t know you were going to dress up so much.” Maybe it’s because he worked vice and thought I looked like a hooker, I don’t know, but after seeing the surprised look on his face I decided to change into something more conservative.

The Kingdome was full of hip people of all ages who came to see the Stones-- parents with little children, teenagers, old hippies, and several conservative-looking 25-45-year-olds. We had fifth row seats, slightly off center stage (the tickets were purchased over the phone from a scalper who lives in Chicago).

When Mick walked out the crowd went crazy. He still had more charisma oozing out his trademark mouth than Angelina Jolie, and his energy level was amazing. He jumped around the stage like a 25-year-old and didn't slow down until the show ended. What else I found amazing was how Keith Richards managed to endure years of late-night partying and body abuse. He may look like he’s ninety, but he still knows how to give the audience what they paid for.

About halfway through the first set a sweet-smelling cloud starting filling the stadium and I wondered how so many people could be smoking pot in such a closely guarded enclosure without being caught. The reality was that nobody cared, including my date. After all, it was the Stones.

Speaking of pot, a couple of acquaintances offered to be my medical marijuana providers—“to help me get through chemotherapy.” Needless to say, they were very disappointed when I turned down their generous offer. Not that I didn’t appreciate their “kindness”, it’s just that I’ve never liked smoking anything. Besides, I already had breast cancer and didn’t want lung cancer too.

I’ve heard that marijuana really does help some patients tolerate chemo treatments better, especially those in later stages of cancer, so I’m not discouraging chemo toking—it’s just that it’s not for me. The anti-nausea drugs Kaiser gave me worked just fine.

My suggestion to other chemotherapy patients is to try anything that works for you because as you’ll find out, chemo isn’t a party. As for me, I’ll take the Stones over Yanni anytime.

Participate in a Breast Cancer Treatment Study

I have always been one to participate in clinical trials, except for the time I had a colonoscopy and was asked to participate in a study involving the diameter and flexibility of the scope that would be snaked through my colon. The gastroenterologist told me that neither he nor I would know which of three scopes he would use until he opened the package and by that time I would be in a "twilight sleep". He said that it might be an adult size scope that is larger-in-diameter and stiffer than the other two or it could be an adult size that’s larger in diameter, but more flexible or it may be a child size scope that’s the smallest in diameter and the most flexible. That time I opted out of the study and went for the smallest, most flexible scope. But that’s a different story.

This time, I was given the opportunity to participate in a RayGel study during my breast cancer radiation treatments. RayGel is a formulation of reduced glutathione and anthocyanins extracts from various blue/purple flowers and it protects the skin against burning, which is one of the possible side-effects of breast radiation.

I was given several small tubes of the gel and was instructed to apply it one hour prior to my radiation treatment and again four hours later and to mark the application times on a chart. The physician in charge of the study told me that I wouldn’t know until after the study was completed whether I was given Ray-gel or a placebo.

Each pea-sized amount of gel covered four inches of skin, and it took only four peas to adequately cover my treatment area. I wondered if women with larger breasts were given more tubes of gel.

As it turned out I cheated a little and only applied the RayGel once a day, prior to my treatment and aloe vera gel just before bedtime. It really wasn't convenient for me to apply the RayGel in the afternoons because I always seemed to be away from home in a public place during the time I was supposed to apply it. I needed to look in a mirror while applying the purple stuff to make sure I hit the target and I didn't feel comfortable exposing my nippleless breast in a public restroom. I was told to continue applying it once a day, to see if the gel (or placebo) would still be effective when applied less frequently (sort of a study within a study).

At the end of my radiation treatments, the skin on my right breast looked exactly the same as the left. There was one little area behind my right armpit where I didn’t apply the gel because I didn’t know that the x-ray beam was targeting that area too. Well, that was the only area that was burned and rough-feeling, so I know that I received the real thing.

Click here to find out more about the RayGel clinical trial. If there are no clinical trials in your area, you can purchase it online—although it’s not cheap.

By-the-way, my aunt Ginny is currently undergoing treatment for breast cancer and her left breast is bright red from radiation burns. I gave her some leftover RayGel tubes, but she was reluctant to try it until she consulted with her doctor.

My advice is, if you have access to RayGel, use it because it does work. Why suffer painful burning if you don’t have to, not to mention the fact that radiation itself can cause skin cancer if it burns your skin (the radiologist in charge of the study said).

Join the Race for the Cure

Last year at this time I signed up for the 5k walk in the Susan Komen Foundation Race for the Cure. I had recently undergone two surgeries. The first to remove the lump and the second to remove more tissue, including my nipple and areola, in order to get a clear margin. I was healing fast and didn't have any pain or complications from the surgery and I was ready to get some exercise, especially since it would be for such a good cause.

My sisters and a couple of friends met me at a breast cancer awareness seminar at the Rose Garden arena a couple of weeks before the Race to register for the event. At first I was hesitant to enter the race as a survivor because it meant wearing a pink tee-shirt instead of white and I didn't want to be labeled. If others happened to see me wearing a pink tee-shirt at the televised event, my secret would be out. So I took both a white tee-shirt and a pink tee-shirt, just in case.

At one of the seminar booths a woman asked me if I was a survivor and I said, "I hope that I will be." She said, "When were you diagnosed?" I told her that I found out the beginning of August that I had breast cancer, but that I hadn't started treatment yet. She said, "Well, you're here now and you're alive, so you're a survivor."

I looked around the room at all of the women, most of them "survivors." There was a certain sisterhood--like a click or a club into which I was being initiated, but didn't belong. They all smiled and welcomed me and asked me if I wanted to volunteer for this or that or to join a Dragon Boat team comprised solely of breast cancer survivors. All of a sudden I was a member of a group that I didn't feel any connection with and I certainly wasn't going to display my private illness to the world, least of all to a group of women who seemed to be acting strong outwardly when I knew that deep down inside they must be as frightened as I was.

The day of the race I donned my pink tee-shirt and joined my group, which included my two sisters, a niece, my sister-in-law and a few close friends. One of my friends, Pam Brugger, is also a survivor so the two of us led the pack with our pink baseball caps, bright pink tee-shirts and big white athletic shoes. There were literally thousands of women participating in the Race-- a sea of pink and white moving over the streets of Portland. And there were just as many spectators cheering us on with music, shouts of joy and words of encouragement. When I experienced the overwhelming support of those in the race and on the sidelines, who gave up their weekend for the cause, I was moved to tears. I was proud that I was doing something to help protect others from the deadly disease.

But when the race was over and my team and I drove to a lunch spot a few miles away I took off my pink tee shirt because I didn't want strangers looking at me with pity and I didn't want special treatment by the restaurant staff. Besides, pink isn't my color. Yes, it was about me again. I was in total denial.

In retrospect, I am so glad that I joined the Race for the Cure. I realized that it really wasn't about me after all. It was about finding a cure so that other women (1 in 7) won't have to join my exclusive club.

The 2007 Komen Race for the Cure is coming up September 27. Don't forget to participate by entering the race or donating money to the cause.

When you start chemotherapy start a new job

When I first mentioned the idea to my oncologist, Dr. Leimert, he was not very pleased and had some difficulty understanding why I would want to do something that could possibly cause me more stress than I was currently going through. He said that most people quit their jobs or take a leave of absence when they start chemotherapy because it’s so stressful and uncomfortable. I told him that not having an income would be more stressful.

When I was first diagnosed with breast cancer I spent every waking moment on my computer doing Google searches on everything from breast cancer treatments to breast reconstruction to areola tattooing. There was no way I could concentrate on running two businesses, but I knew that I had to do something to take my mind off the breast cancer and my obsessive Googling, so I thought, why not work for someone else?

After stocking up on healthy food from Trader Joes I stopped next door at Norwalk Furniture and asked the manager if he was doing any hiring and he said, “As a matter of fact, I am.” So I filled out an application and told him that I had no experience in retail, had never designed a home (except my own), but that I did have an art background and had worked as a draftsman for two years, and that I had very good taste (at least I like to think so) and a strong sense of design and that my friends even asked me for advice on how to decorate their homes.

He gave me a pencil and paper, a room template, some furniture cutouts, pointed me toward the fabric displays and said, “Okay, design a living room and then pitch your ideas to me.” He hired me on the spot.

And so against the advice of Dr. Leimert, I started my new job the day after my first chemotherapy treatment.

During the four months that I worked for Norwalk I managed to look and act halfway normal. In fact nobody knew that I was undergoing chemotherapy treatments until the last two weeks. Whenever I felt nausea coming on I popped some anti-nausea pills. My co-workers thought I was dieting. And the wigs I wore fit in perfectly with my new designer role. I looked fashionable --- artsy and trendy --- and my customers were always complimenting me on my hairstyle.

It wasn’t always easy. Sometime in snowy January I came down with pneumonia and was confined to my apartment for ten days so that I wouldn’t be exposed to any other disease, and also to prevent spreading the pneumonia to others. It was a long ten days. I watched OPB and Oprah and read novels and did crossword puzzles and started Google searches on breast cancer again. The only contact I had with the outside world was when my brother, Mark, left bags of groceries on my front porch. He rang the doorbell, but managed to get halfway down the sidewalk by the time I opened the door.

During the second two months of chemo I was given infusions of Taxol, which didn’t produce nausea, but did make my body ache during 5-8 days after the treatment. On the fifth day following my first Taxol treatment I could barely get out of bed. My whole body ached, like I had the flu. I took a pain pill and stayed on the sofa all day watching old Clint Eastwood movies.

I managed to hang on to the job until my last day of chemo when the manager let me go because “it wasn’t a good match.”

The main point is that the new job helped get me through chemotherapy with relatively little discomfort. Even though I didn’t feel great some days, I always had to act like I felt fine so that others wouldn’t know what I was going through. Learning a new job forced me to focus on something besides the breast cancer and I really enjoyed the work --- at least the design element.

My advice to others who are about to begin chemotherapy is, instead of moping around and feeling sorry for yourself during chemotherapy treatments, start a new job or take up a new hobby. You’ll be much better off focusing on something positive. Chemotherapy does not make you an invalid, so you don’t have to act like one. I know it’s tempting to let your friends and family baby you, but don’t let them. Instead, be an inspiration for others by taking charge of your life and by being strong. Do something you enjoy.

If you've lost your hair invite a bald guy over

Even though my friends and family told me how beautiful I looked with no hair --- that I had a great-shaped head and should go bald all the time --- it didn’t seem to matter what they said. Whenever I looked in the mirror I saw an alien.

I decided that the only way I would feel better was to invite my bald friend, Norm, over because he might understand what I was going through. Norm started losing his hair at an early age and has been shaving his head ever since. When I first met him a few years ago at the Portland Art Museum I thought his shaved head looked sexy and exotic. Maybe he would think the same about mine.

Norm’s my buddy and we have a lot in common. We’re both techno-nerds and perfectionists with matching IQs and now, matching heads. Besides everything else he’s done for me, I know that I can always count on him for a good laugh, and if ever I needed one, it was now.

Well, my idea worked. As soon as I opened the front door and saw him standing there with his bald head and big grin I felt better already. Two glasses of wine later we were cracking up laughing as we compared our shiny domes in the mirror. One noticeable difference was our head size. Was his head really big or was mine just small? If we were seen in public together people might think we had been cast in a sci-fi movie.

The important thing is, he made me feel normal again. He was kind, loving and funny and he told me that my bald head was beautiful --- that I looked great with no hair. Yes, I know it was the same thing my family and friends told me, but it sounded different coming from him (one baldy to another).

So my advice is, if you’re feeling a little depressed because you’ve lost all of your hair due to chemotherapy, invite a bald person to dinner. I promise it will cheer you up.

Delay breast cancer surgery until after your high school reunion

Cheryl & Butch - High School Dance  Cheryl & Butch -  High School Reunion

When my surgeon gave me the option of a lumpectomy with radiation or a mastectomy I chose the lumpectomy because I wanted to preserve as much of my petite-size breast as possible, plus she said that the survival rate was the same for a lumpectomy with radiation or a mastectomy. She also told me that even though the tumor was located just under the nipple, she thought she could save the nipple and areola or at least try.

Since I didn’t really know how much of my breast would be taken during surgery or what the healing time would be, I asked her if I could delay the surgery until after my upcoming high school reunion. I didn’t want to go to my reunion with a tender unhealed breast or no breast. My surgeon said, “Go and enjoy yourself. The cancer took 7-15 years to grow, so waiting 2-3 weeks isn’t going to make any difference at all.”

After making him swear to secrecy I told my friend and former high school admirer, Butch, that I had breast cancer and that I wasn’t sure if I would be able to make it to our class reunion. I told him that if I went to the reunion I didn’t want former classmates pointing at me and whispering to each other, “Did you know that Cheryl has breast cancer?” or coming up to me with pity in their eyes saying, “I’m so sorry to hear about your breast cancer.” Or worse yet, that the men who used to have boyhood crushes on me would recoil in repulsion and ignore me the whole evening. Well, Butch talked me into going to the reunion. He said that people would be disappointed if I didn’t go and that I needed to have some fun.

So I flew to Long Beach and couldn’t wait to see my old friends, knowing that my secret would be safe. Later at the reunion dinner-dance when members of my former high school click singled out some of the others we went to school with and said with pity in their voices, “Did you know that Gerry R. and Tom J. both had knee replacement surgery 3 months ago and that Tom’s wife had breast cancer last year? And look at Sue W. She has MS and we thought she was going to die 5 years ago --- even made her a farewell video, but she’s still here and doing better now than she was at the last reunion … and poor Ray N. had a heart attack and died and Chuck H. had a heart attack too, but was luckier than Ray and is still with us. And….oh, did you hear that Geri D. and Terri A. both died from breast cancer? Who would have thought that would happen. They were both so beautiful.” I joined in with pity and shock in my voice, “Really? How awful!” There was no way that I was going to be put in the same category with the unfortunate and unlucky ones --- the ‘other’ ones. Yes, my secret would remain with me for the next two days---and with Butch, of course. Thanks, Butch. I had a great time at the reunion and didn’t even think about the future. It was too much fun remembering the past.

My advice to breast cancer patients is to do something fun and exciting before your treatment starts because you won’t be able to enjoy yourself for months to come. In fact, it may be the last time you’ll feel normal, so celebrate the moment and don’t worry about the future.

Use a lint remover roller to test for chemotherapy hair loss

Not quite sure if you’re losing your hair yet? One way to find out is to use a masking tape lint remover roller on your head. If you end up with hair on the sticky side of the tape, most likely you’re losing your hair.

A couple of weeks after my buzz job I mentioned to my sister, Diane, that I didn’t think my hair had started falling out yet because I hadn’t seen any short hairs on my pillow or clothing. I told her that maybe I should use some scotch tape on my head and see if any hair comes out on the sticky side of the tape. She said, “Why don’t you use a lint remover instead? It would be easier and faster.” What a great idea! I got out my masking tape lint remover roller and began rolling it all over my stubbles. Guess what? There were short hairs all over the tape. Then I became obsessed with removing all of the hair that I could, so for the next half-hour and 20 strips of masking tape later I ran the roller over my head, each time pulling out more stubble. Then I began to worry that my hair may not grow back at all if I continued pulling it out by the roots, so I put the roller back in the drawer. This ended up not to be true, in fact my hair grew back thicker after chemotherapy.

There might be other ways to determine whether or not you’re losing your hair, but the above method worked for me. If you have another process that worked for you, please share it.

Get a buzz job before your first chemotherapy treatment

My oncologist told me that I would start losing my hair approximately 2.5 weeks after my first chemotherapy treatment for breast cancer and that I should get my head shaved before that time because it would be less traumatic than watching my hair fall out in big clumps. Since I was starting a new job the day after my first chemo treatment, I decided to get my head shaved right away. I certainly didn’t want to be with a customer when a clump of hair dropped onto my shoulder. How would I explain that?

So I went to my hairdresser (the same one who cut my hair and dyed it red) and told her I was ready for my first buzz job. The transformation from fiery redhead to GI Jane was interesting, to say the least. I watched as my new red ringlets dropped on the floor all around me. Where did all that hair come from? She swept it up into a pile while I stared at myself in the mirror. The most interesting part of the process was seeing myself bald (well, almost bald). She hadn’t shaved my head completely, so stubble remained. Other than looking like a boy, it wasn’t that bad. I could handle it, besides I had my new sexy straight wigs. I always wanted straight hair and now I could have it.

My advice to breast cancer patients is to have your head shaved and wear a wig or go completely bald and wear large hoop earrings. Forget wearing head scarves and turbans unless you want to look like you're undergoing chemotherapy. If you shave your head, you'll just look trendy or hip, in fact you might even want to get a tattoo. When you wear a wig, if it's a natural-looking one, people will just think that you've changed your hairstyle.

Try a new radical hairstyle before you start chemotherapy

When I found out that I was definitely going to lose my hair because of the chemotherapy cocktail that I would be given, I decided that I wanted a new hairstyle --- something radical that I would be afraid to try under normal circumstances. I scheduled an appointment with a hairstylist and told her that I wanted her to cut my hair short and dye it red.

It may seem silly, since I would be losing all of my red hair in just a few weeks. Actually there was no better time because what if I didn't like my new do? Not to worry! I wouldn't have it very long.

My hairstylest performed her magic and after the initial shock wore off I found that I really did like my new short curly red hair, in fact I loved it! It wasn’t auburn or strawberry blond, burgundy or chestnut with red highlights. It was pure red, bright and warm red-red. I couldn't wait to show it off. It gave me something to look forward to, for a change.

My advice to other breast cancer patients who are facing chemotherapy:
If you have ever wondered what you would look like in a different hairstyle or hair color, now is the time find out. What have you got to lose besides your hair?

Don't cancel your health insurance yet

For three years I didn't have health insurance. I had decided that since my already-extremely-high premiums were increasing substantially on an annual basis and because I was such a healthy person, paying for health insurance seemed like a waste of my money, money that could be spent elsewhere. Toward the end of the three years I decided that maybe I should get some health insurance because I wasn't getting any younger and I hadn't had a checkup in three years, even though I didn't have any ailments or known health issues at the time I signed up.

I decided to go with Kaiser Permanente because that's what I had before and I was very satisfied with their medical care and their well-organized patient record keeping practices. After my previous experience with a private insurance company and OHSU's unorganized (understatement) record keeping and patient scheduling, Kaiser was a dream. At the same time I applied for Kaiser Insurance I also applied for AARP's indemnity health insurance policy because it was reasonable and it would help reimburse me for any Kaiser co-pays and other expenses. Both policies were approved and activated at the same time.

Buying the two policies turned out to be one of the best decisions I ever made. Opting not to include prescription benefit coverage turned out to be one of the worst, other than the decision to go without health insurance for three years. Yes, my premiums are still expensive and continue to increase annually, but the cost is worth every penny that I pay.

Soon after my insurance policies were activated I made an appointment for a general checkup which included blood tests, urine test, pap smear and a mammogram.