BREAST CANCER Diagnosis

I found the lump in January 1999. It was hard and small, in my left breast, under my armpit. I had gotten in the habit of doing a monthly self-exam in college and had kept it up since moving to New York City after graduation. I figured the lump was either a harmless cyst, like my mother had had removed when she was my age, or nothing. At 23, it was certainly nothing major. After my mother found out, she wouldn’t stop bugging me about it. After all, my dad’s sister had breast cancer at age 31.

I tried to ignore it. The lump kept growing. I finally got a mammogram in June. But the result was inconclusive – as it is for many young women whose breast tissue is relatively dense. I was so relieved – I was okay! The doctor said I was young, and “didn’t fit the profile” for breast cancer, but to get an ultrasound just to be sure. But I tuned out that advice – I would do it later.

By November, the lump was the size of a small marble. At my mother’s constant urging, I finally made an appointment to get an ultrasound. As I watched the doctor examine the images of my breast on the screen, I said “It’s a cyst, right?” No, she replied tonelessly, it wasn’t. Then she said we’d better get a biopsy to see if it was malignant.

The doctor stuck a needle in the lump to collect sample cells. I waited for about 10 excruciating minutes. As soon as I saw the doctor’s face, my heart started pounding. “It’s breast cancer,” she said softly. I put my head in my hands and sobbed.

The very next day, December 15, 1999, almost one year after I found the lump, I had a lumpectomy. My parents, brother Z, and best friend Liz came from Boston to be with me. I bluntly told all my friends, “I have breast cancer.” People were speechless at first, but almost everyone wanted to be with me and help out however they could.

The week after the lumpectomy was the worst week in my life. I waited to hear whether the cancer had spread, and what my chances of survival were. I was certain it had spread – I had let it go for a year. As other people were shopping for Christmas, I was imagining dying, and how I was going to say good-bye to everyone. And I also fantasized about trips I could take before I died. I got lucky. My cancer had apparently not spread. I had a sentinel node biopsy, which indicated it was not in the lymph nodes. But the lumpectomy, which left a 2 inch scar under my armpit was only the beginning.

In the next few weeks, I had to decide on a treatment plan. I assumed the doctors would simply tell me what was going to happen, but unfortunately, it wasn’t that simple. Cancer treatment is far from being an exact science, and the options vary. Therefore, the doctors could only offer me different treatment alternatives, but ultimately the decision was mine alone. I visited three different doctors hoping to arrive at a consensus. However, the only thing that all the doctors agreed upon was that I would have to undergo chemotherapy in order to treat what the doctors termed an aggressive, fast-growing cancer. They differed on the duration of the treatment and the specific medicines involved. One doctor recommended a prophylactic double mastectomy, in which case I wouldn’t need radiation, but even that wouldn’t guarantee that the cancer wouldn’t return.

After weighing all of my options, I decided on four treatments of Adryomyicin and Cytoxin. These would be administered at three week intervals, and would be followed by two months of daily radiation treatment. The final decision I had to make concerning my treatment was where to have it administered. I considered cancer centers in both New York City and in Boston, where my parents live. I ultimately decided to have my treatment in Manhattan because my job and friends are there. I chose St. Vincent’s Comprehensive Cancer Center because they seemed to be the most patient-oriented, and I wanted to be sure I’d feel like an individual, and not just a statistic. (excerpted from story by Jen Braunshweiger, Mademoiselle December 2000)

Finding out

When I was first diagnosed with cancer, my biggest concern was not over how sick the chemotherapy was going to make me. It wasn’t over the possibility that the cancer might return once my treatment was over. What I agonized over the most was the fact that I was going to lose my hair. While a part of me realized that this was really the least of my worries, I couldn’t stop thinking about how terrible I was going to look without hair. The very thought of being a bald 24 year old woman drove me to tears every time I considered it. It was stressing me out considerably.

Thankfully, my friend Brian helped me to realize that I was getting overly concerned about a fairly minor issue in the scheme of things. He jokingly told me that he’d never really liked my hair anyway, and he thought a bare scalp would be an improvement. When I was finally able to laugh at the situation, I realized that not only was this something I could deal with, but I could actually have fun with it.

Hair-cutting party

Once I accepted the fact that I was going to lose all of my hair, my biggest concern was over how others would react to my baldness. I didn’t want my friends to feel uncomfortable seeing me without hair. I wanted to be sure that they knew that I was cool with it, and that they should be too. I needed them to feel as natural joking about my being bald as I did.

I decided that the easiest way to accomplish this was to involve my friends in the process. To do this, I threw a hair-cutting party after my first chemo treatment. I let each one of them cut a handful of my hair, and to lighten the mood we tied each group of strands with a pink ribbon and let everyone keep one. This made them see how bizarre the whole situation was, and made them all realize that I could see some humor in my plight. It loosened everyone up. They realized they could talk openly to me about the cancer, and they have felt that way ever since.

Having the party was beneficial in other ways as well. It allowed me to feel like I was in control of the situation, instead of at the mercy of chemo’s side effects. It also allowed me to get used to my hair loss gradually, first cutting my hair extremely short, and then shaving it off for a good a couple of weeks later. I can’t honestly say that I liked being bald in the least, but by including my friends in the process, I made losing my hair as painless as possible.

By the time my hair started to fall out, I was fully prepared for baldness. Hair on “other” parts of my body fell out first (!), then from my head, arms, legs, stomach, and finally my nose, eyelashes and eyebrows. My scalp had started to ache, presumable from the hair loss. I decided it was time to shave it off completely. I realized that this would probably be the only time in my life I would be doing such a thing, so I tried a number of different looks. I thought I looked particularly devious with a set of devil horns, and I would have to say that the Mohawk looked…different. By that point, I had come to appreciate the convenience of a bald head. I didn’t have to worry about blow-drying and brushing, showering took half the time it did before, and I was always on time for work!

Wig Shopping

I went to see a wig stylist, who recommended that I select a wig closely resembling my natural hair. “This is no time to have an identity crisis,” he advised me. But after trying a few on, I realized that if I had to wear a wig, I might as well be as stylish as possible. Despite having naturally black hair, I selected a red wig for everyday use, and a short, glamorous platinum blonde wig for going out.

My first day at work wearing a wig, many of my co-workers introduced themselves to me, thinking at first that I was a new employee, and I was able to have some fun with that situation. There have also been situations where I ran into people on the street that I wanted to avoid, and instead of having to come up with a lame excuse about having to be somewhere, I simply looked them in the eye and walked right by, unrecognized.

While wearing a wig can be a pain, I enjoyed it as well. All in all, I can’t say I enjoyed being bald, but I realized that things could be a lot worse. Just ask my dad – he’s bald, but his hair hasn’t grown back in a few months!

First chemotherapy treatment

Not knowing what to expect, I was very nervous before my first chemotherapy treatment. To ease my nerves, I went to the hospital the day before to have them walk me through the process. My mother and several friends stayed with me during the four hours of treatment. The hospital gave us a room, and a selection of movies to watch. We ordered pizza, watched Tootsie, talked and laughed a lot (though probably more out of nervousness than actually having fun!).

As they prepared to inject me the the red AC, I became very scared and began shaking. Why was I letting someone inject poison into my body? The nurse told me to think of it as an army of red soldiers going in to kill all the bad cells. Psychologically, this made it much easier to deal with.

After the treatment was over, I felt pretty good, for awhile. My nerves were acting up a bit in anticipation of how my body would react, but overall I felt fine. That night the nausea started, despite the preventative medication I took. Over the next few days, I was nauseous. It was a pretty miserable time, but I new it wouldn’t last, and I just had to persevere.

Despite not feeling fully better for a week or so, I was able to return to work after missing just two days.

Second chemo treatment

My second treatment, scheduled for three weeks after the first, was delayed due to my white blood cell count. It was too low for me to have the therapy, and I had a wait a few days for my count to rise. Despite the fact that it was just a brief postponement, it was very frustrating.

After the second treatment, the nausea wasn’t as intense, but it persisted for a couple of weeks. I didn’t vomit, but instead suffered more of an upset stomach and flu-like symptoms. I also had hot flashes for a couple of days. My doctors had me take Neupogen shots. These were intended to increase my white blood cell count, enabling me to have my third treatment on time. These shots were miserable. I administered them to myself at home. In addition to the difficulty of injecting myself, I found that the Neupogen made my body extremely sore, similar to working out at the gym for too many hours straight.

Third chemo treatment

My third treatment came and went with little drama. The nausea was fairly minimal, and I didn’t have any hot flashes. The only thing that really bothered me was the Neupogen shots that I had to take again after the treatment. At this point, my thoughts began to turn to the future. Since the chemo kills all the fast growing cells in my body, there has been no chance or recurrence while receiving treatment. However, with my final treatment approaching, I began to get apprehensive. Chemo had been far from enjoyable, but at least it offered some peace of mind. Once the chemo was over, what was to prevent the cancer from returning?

Fourth chemo treatment

My fourth treatment went smoothly. However, a few days after the treatment, I caught a cold. Ordinarily, this would be no big deal. With my weakened immune system, it really caused me some major discomfort. Instead of simply being an annoyance, it felt like a severe case of the flu. My whole body ached, and I was horribly weak and dizzy. I couldn’t even walk down the stairs without feeling like I was going to pass out. But besides this sickness, I felt a strange combination of relief and anxiety. I almost couldn’t believe that I had actually finished chemo and the worst of everything was behind me. But I couldn’t escape the empty feeling that I could no longer rely on the drugs to keep the cancer away.

Side effects of chemotherapy

Directly after treatments:

  • Dehydration – drink lots of water and go to the bathroom often to flush body of drugs

  • Loss of appetite, which returns a couple days later

  • Light-headed from medication

Night of treatment and next couple days:

  • Nausea/vomiting. Severe after first treatment. Zofran and Decadron helped control vomiting after 2nd, 3rd and 4th treatments.

  • Diarrhea/constipation

  • Stomach pains

Other:

  • Hair loss begins about 3 weeks after 1st treatment. (Before my hair fell out, my scalp was very sensitive)

  • Eyebrows, eyelashes and stomach hair only began falling out after 3rd treatment and never fully came out.

  • Hot flashes (only happened after my second treatment)

  • Fatigue

  • Difficulty sleeping

  • Gas

  • Occasional watery eyes

  • Occasional runny nose

  • Occasional headaches

**NOTE** Not all of these side effects occur all the time nor do they occur all at once. Some people may not even experience them. It is different for everyone.

Radiation

I couldn’t wait for radiation to begin. I knew it would be much easier on my body that the chemo. But before radiation began, I had to get my “tattoos.” I had never gotten a tattoo before so it was a little scary. They put me under a machine, drew some marks on me with a thick purple marker and then zapped me. Surprisingly, it wasn’t so bad – it basically felt like a little pin prick in six different places.

As I expected, radiation was MUCH easier than chemo. It took about ten minutes once I got into the room, didn’t hurt at all, and didn’t have many side effects (though I did feel a little sick to my stomach the first couple times). The worst part about radiation was the waiting. I went before work, and waited with other patients who seemed much worse off than I was. Going every day, I made friends with the other people in the room. My suggestion is to be patient, and definitely get a good long book to read. You’ll probably need it for the next 6 weeks.

Tamoxifen

A couple of months after all my treatments and radiation ended, I was started on tamoxifen because I was ER+, or estrogen receptor positive, meaning my tumor was fed by estrogen. The tamoxifen acts like an estrogen inhibitor, blocking the extrogen in my body so it can’t “feed” any tumors. Many people have bad side effects from tamoxifen including hot flashes, early menopause, depression, weight gain, etc. My overall experience has been okay. At the beginning, I had terrible hot flashes and mild depression so the doctors prescribed Prozac to help both of these symptoms – it worked. It has been three years since I started tamoxifen and I no longer have any symptoms at all.

Below are a bunch of pics from shaving hair to bald, wigs, and back to short hair again!


After treatments ended

My biggest concern after all my treatments ended was “What do I talk about with people?” All I had talked about for the past year was breast cancer. I didn’t think I would be able to hold a conversation about anything else again. It was also a little strange with my friends – they thought I would be happy that my treatments were over. I wasn’t. In fact, I was more scared than ever and they didn’t understand this. They expected things to go back to how they were before I was diagnosed, but I wasn’t the same. I had changed, my priorities had changed, and I thought about life differently. Additionally, I thought about the cancer returning on a daily basis. Would this ever change? I didn’t think so. In fact, I was concerned that the rest of my life was going to revolve around breast cancer. It took me almost a year to stop thinking about cancer constantly. Right as I was beginning to move on with my life I had my 1 year anniversary since diagnosis.

1 year update

December 2000. The one year anniversary of my diagnosis got me very upset. I had just begun to move on with my life and then I had to revisit everything. It seemed more real to me at this point than it had the entire time I had actually gone through it. I’m assuming this is because I was not in action/survival mode any longer and had a chance to reflect on everything that had occurred during the past year.

2 year update

December 2001. By the time the 2 year anniversary since my diagnosis came around, I was feeling healthy, glad to be alive and my life was moving beyond breast cancer. I had already refocused my priorities during treatment and now I had begun acting on it. I had found two jobs that I loved and was very pleased with the place I was in my life, a feeling I had never felt before.

3 year update

December 2002. I had breast cancer three years ago??? It seems like that was someone else. It seems so far away. I look at pictures of me bald. Was that really me? Good news is, I rarely think about breast cancer any more. Of course I go to my check-ups every six months. And I do get a little nervous when I get my mammogram and ultrasound, but really, this is the only time of year that I think about the cancer.

4 1/2 Year Update

June 2004. It’s been over four years now since I was first diagnosed with breast cancer. I still get nervous when I go to my checkups. In June 2004, I had another checkup for my now yearly mammogram and ultrasound. Everything looked fine and I left. But 15 minutes after walking out of the hospital, I got a call from the radiologist asking me to come back in. They did some more tests and spoke with my breast surgeon. They found calcifications where my original tumor was that they hadn’t seen the year before in my mammogram. They asked me come in the next morning for a Wire Excisional Biopsy to remove the lumps and send them off to be biopsied.

I didn’t tell anyone except for one friend that I was going in for surgery. I figured if it was nothing, there was no reason to scare people. If it was something, then I could tell them.

I went in the next morning for surgery fairly scared and trying to remain calm. After all, they told me that the calcifications could be from the scar tissue. They did another mammogram which was one of the most painful things ever. My breast was pressed very flat for so long that I almost fainted. A breast wire localization biopsy was performed. Using the mammogram as a guide, the radiologist locates the area of concern, numbs the area with a local anesthetic, and then inserts a thin wire into the breast so that the tip rests in the suspicious area. The wire is kept in place with a gauze dressing. A second mammogram is taken to confirm that the wire is located in the suspicious area.

The surgeon then numbs your breast with a local anesthetic and you will also receive medication to help you relax and sleep. The surgeon makes an incision and then locates and removes the wire-targeted area in your breast. This part of the procedure is called the biopsy. The surgeon will remove the area of tissue surrounding the wire and send it back to the Breast Imaging Department. It is viewed in the mammogram machine to verify that the abnormality was removed. The specimen is then sent to pathology. Sutures that can be absorbed by the body are usually used to close the skin incision. Therefore, there is no need to remove stitches or sutures at a later time. The operation ended up being just like the lumpectomy I had had 4 years earlier and they actually cut open the same scar as well.

My surgeon felt that there was only about a 10% chance of it being cancer. But because of my history she wanted to be very certain. It took over a week to get the results and thankfully it was just calcifications that are fairly normal around the scar tissue. A huge relief!

I had gone over in my head the different scenarios if I was diagnosed again. What I would have done differently in the past four years? What would I be doing now? I can honestly say, I am doing exactly what I want to be doing — relocating to Los Angeles to pursue a full-time music career, something I am passionate about. It took breast cancer to make me take this risk four years ago, and I am now actually doing it. So the experience of a possible recurrence helped me reevaluate once again and confirmed for me the fact that I am living my life exactly as I want to be.

6 year update

December 15, 2005. I’m sitting on the plane from LA to New York to play a show with the Trans-Siberian Orchestra at Madison Square Garden tomorrow. I’ve never played there before and I’ve heard it’s a sold out show so I’m very excited. I just looked at my calendar and realized that exactly six years ago at almost this same time, I was sitting in the doctor’s office and had just been told I had breast cancer. I remember how afraid I was. I was shaking and trying to hold my tears back. My parents were on their way to NY for my surgery the next day.

Breast cancer is no longer on my mind every second of every day as it was for those next couple years. And it’s sometimes hard to keep things in perspective as I was able to do for a while. I sometimes get very annoyed if I’m sitting in traffic for too long, or if I answer the phone and it’s a telemarketer (which has been happening a lot lately) and I have to keep reminding myself that there are bigger things in life to worry about than traffic and telemarketers. My hair is back to it’s normal length, and I am feeling great now. A major issue that remains is my health insurance problem…I had been on Cobra up until a few months ago but it was running out so I needed to get new insurance. I was told that after being 5 years in remission, the insurance companies would consider me healthy and I could get on a regular plan. Not true. I have applied and reapplied for health insurance and no one will take me because of “pre-existing conditions.” It’s very frustrating and I’ve spent hours on the phone arguing with people. So I am on an individual plan that is beyond expensive but it does cover everything. Other than that, I am living out in LA, performing and teaching. I am far from making a lot of money but I am very happy with what I am doing and living as I promised myself I would do — with no regrets.

8 Year update

Wow, time flies. I just realized I haven’t written an update in a while. I’m continuing to pursue my dream of being a musician and I’ve played some pretty cool shows in the past couple years ‚Äì I went on tour with Gnarls Barkley (opening for the Red Hot Chili Peppers), played with Mary Blige and Jay-Z, Roger Daltrey (The WHO) and Cheap Trick. I’ve also been playing with an Australian band, Porcelain which is signed to Universal Records. We’ve had our record finished for a while but don’t have a release date set yet…
I’ve been very fortunate but it has not been easy and paying bills can be rough, especially my medical bills.

My Blue Cross premiums are $450/month with a $1500 deductible because I am self-insured. After I reach my deductible, I still have to cover 30% of all my doctors visits. This may not sound like a lot, but when I have to go get something like an MRI that costs a few thousand dollars, it gets expensive. Most of my income goes to paying for doctor visits, health insurance and check ups that I have regularly. Blue Cross says I’m not considered in remission until 15 years has passed, so I have a “pre-existing condition” for another seven years.

Recently I was declined for a breast MRI. I had just finished watching Michael Moore’s Sicko. If you haven’t seen it, he investigates insurance companies and finds out that the clinical reviewers on cases like mine actually get bonuses for denying people things like MRI’s because it saves money for the health insurance companies.

I decided to Google the doctor who reviewed my case here in California, since his name was on the letter of denial for the MRI. I was surprised when he actually answered the phone. I explained to him that an MRI was the only diagnostic tool available to detect breast cancer early and by denying me coverage he was taking away the only reliable screening process I had. He kept saying I should get a mammogram. He knew nothing about breast cancer and I had to school him a bit considering his background was in mental health and had NOTHING to do with breast cancer. The health care system here really needs some work.

9 year update

It’s hard to believe it’s been almost nine years since I was diagnosed. To be honest this is a great thing and a scary thing. I was told by two doctors when I was diagnosed that they wanted remove my ovaries out because I probably had the gene (BRCA) which causes breast and ovarian cancer. The third doctor said I could wait until I had children and they’d want to do an oophorectomy by the time I was 35 since that’s the time ovarian cancer starts showing up. At the time, it seemed like forever. Of course I thought I would have children by the time I was 35. No problem. Well, I’m 2 years away from that age and I’m not even close. I’m not even close to getting married. And I’m starting to freak out a bit, because I really do want to have children.

Some women elect to get their eggs frozen before having chemotherapy. To do this, they would have to pump my body full of hormones to get my body to release eggs. I had originally asked about this but because my cancer was estrogen receptor positive, which means my cancer fed on hormones, I was told that wasn’t a good option. I am planning to check into this further and see what my options are. More to follow on this.

13 Year Update:

I recently froze my eggs and everything turned out great. There are still not enough statistics on thawing unfertilized eggs and their success rate in getting pregnant. It was a lot of hormone shots - 2 times a day for about 2 weeks- but the worst one was the “trigger shot” which was about a 2” long needle that I had to inject into my butt. Icing for about 20 minutes before helped the pain a bit. Because of my history, my doctor also had me take Lupron throughout the 2 weeks to help “hide” the estrogen from my body. This is because the type of breast cancer I had was hormone related. 

18 Year Update:

I recently read my 13 year update and decided to expand on what's been happening lately. Last year I tried to get pregnant with those eggs that I had frozen a a few years ago. Going through this process was a lot of money, a lot of doctor appointments and lot more hormone shots. However, happily I was able to get 4 fertilized eggs from the process which they considered a good number. The doctor suggested getting those fertilized embryos tested to figure out which ones were viable to implant. The results came back completely devastating. ALL four were abnormal which means the process didn't work.

I tried two more rounds of IVF which was a lot more money a lot more doctor visits and a LOT more hormone shots for me. The second round resulted in no normal embryos. Even more devastating. The third round resulted in 1 good embryo which was viable. It was implanted. I got PREGNANT!!!! I was ecstatic. And then it miscarried. Although I was only a month into the pregnancy and while people who haven't gone through this might not understand how upsetting this might be, I went into a major depression. My doctor wanted to start a new round right away but I couldn't handle it physically or emotionally and the next day booked a one way trip to Bali to recuperate.

While in Bali I met with a bunch of healers. One very well-known 90 year old healer felt my head, my ears, my feet, my legs. All points he touched were painful. And he kept telling me "you need to let go, let go, let go." His English was poor and I figured he could say that to anyone in NY and that could be a true statement. So I didn't pay much attention to it. I have always been a bit too much in my head.

But later that afternoon, his words sank in and I sobbed for three days straight. Not just sobs, but GUTTURAL sobs. It was the kind of crying I had never done before, from the depths of my soul. Through my tears I tried to examine WHY I was so upset. Where this was coming from. And I realized the healer was right. Even through all of the lessons I had learned in my life, even with this entire path I had been on to discover who I am, I still was trying to control everything. And when it comes to nature and trying getting pregnant, there is no controlling anything. It either happens or it doesn't. And the painful part for me was realizing that no matter how much I wanted or tried to get pregnant, it very possibly wouldn't happen for me now at my age. It was painful to have to let go of the STORY that I had created in my head of what my life might look like of what I wanted it to be and look like. Through my sobs I realized that somehow, I would have to let go of that story and let go of trying to control everything once again. And SURRENDER.

 22 Year Update:

I had pretty much given up hope having a baby. But I couldn’t imagine my life without a baby. One day, during the middle of covid, a friend asked, “In 10 years will you regret not doing anything with that embryo?” It was a life-changing question and I realized that I had to try one more time. I still had an embryo in NY that I thought about all the time. A friend in Scotland who was a in a similar situation as I was, found a surrogate. I knew it would be expensive and there were no guarantees but I’ve tried to live my life without regrets. And I knew I had to try one last time. I found a surrogacy agency and they set me up with someone who lived in NJ. It was the middle of Covid and I was in Arkansas so we met on a zoom call. I wouldn’t meet her in person until a couple months later. It was a strange process — trusting someone that I met in person for about 15 minutes to carry the most precious thing in the world to me. On April 2, 2022, the surrogate gave birth to my little boy. I was there for the birth and it was one of the most beautiful things I’ve ever witnessed. The amount of gratitude and love I had for the woman who gave birth to my baby is beyond words. I truly can’t believe there are people in this world that would be willing to do this for another person. My little guy is only 3 weeks old and I could not be more in love. I am deliriously exhausted but I have never been happier. And I am so thankful for all the people that helped bring this little being into the world.

 

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