Nikki's Story from Utah

I am the mother of four wonderful children and grandmother of seven. I grew up very happy that there was no history of breast cancer in my family. I got divorced 10 years ago and have been living on my own and supporting myself since. A long history of normal mammograms lulled me into not worrying that I was a few months late for my yearly appointment.

In late April 2006, I noticed a lump in my left breast during a self exam. Baffled, I immediately called my doctor and had a mammogram just a few days later. The lump worried the doctors – it terrified me. Then 61 years old, I was diagnosed with breast cancer.

It was a blow I wasn’t ready for – hearing the doctor say the word “cancer” was completely numbing and shocking at the same time. The next month was a whirlwind of doctor appointments, hospital stays, and visits from family and friends. After the diagnosis, I was given the choice of a lumpectomy or mastectomy. Neither option was great, but the decision had to be made.

To beat the cancer, my best bet was a mastectomy. Just a few days later, I had a complete mastectomy of my left breast. During the surgery, the doctor also removed 23 lymph nodes. With my kids helping me recover at the hospital, the doctor told us all that the cancer was Grade III Invasive Ductal Carcinoma. My ductal cancer was not hereditary, but it was incredibly aggressive and very dangerous. By the time of the mastectomy, the tumor was 35mm across and had spread to four of the 23 lymph nodes they removed.

The doctors said there was a chance they got all of the cancer with the mastectomy & lymph node resection. However, since the cancer spread to the lymph nodes there was no way to know for sure where the cancer had spread. With each step complete, I thought “the hardest part is over.” Each new step continued to get worse than the last. The impact of the chemotherapy & radiation were much bigger than I had expected.

Barely recovered from the mastectomy, chemotherapy started. Every other week, I drove myself to the hospital for chemo treatments. The doctors said I’d lose my hair after about a month of treatments. I was devastated when my hair started falling out within days. I didn’t expect it, but losing my hair was a very shocking sign that something was wrong. My cancer was real.

Chemo lasted three months and it seemed like it would never end. After making it through the chemo, daily radiation treatments started. I drove myself to the hospital five days a week for five weeks straight.

During the radiation, Lymphedema settled in my left arm – caused by my new lack of lymph nodes on that side. The Lymphedema caused fluid buildup in my arm and along with it came poor circulation and constant pain. To fight the fluid buildup, I now wear a compression sleeve on my left arm. I am still seeing a therapist for the Lymphedema, but it doesn’t appear to be getting any better.

I developed trouble breathing, so in January my Oncologist sent me to the LDS emergency room to rule out a blood clot in my left lung. The diagnosis came back as Radiation Pneumonitis. Unfortunately, the emergency room visit left me with a $400.00 charge my insurance didn’t cover. Since moving to the Salt Lake City area eight years ago, I’ve worked at least 40 hours a week as a medical assistant and lived on my own.

By the end of the chemo, I was only able to work about 15 hours a week. Even though I had insurance, my reduced work schedule and remaining medical expenses had completely tapped out my savings.

By March 2007, I thought I was doing well and back to working full time. One and a half weeks before my reconstructive surgery my Oncologist called with not so good news about my heart. I was sent to a cardiologist and was told about the findings of my echocardiogram. Congestive Heart Failure. It was another diagnosis I didn’t want to hear – or stomach.

The Congestive Heart Failure was a side effect of the Herceptin I was receiving intravenously at the oncologist office as part of my chemo. After that diagnosis, I was given a stress test. The diagnosis from that was a possible blockage. From there I had an Angiogram. The Angiogram showed no blockage, so that was great news. Still, my heart strength was steadily declining.

The first echocardiogram showed my heart at about 50%, but by the end of the testing it was down to only 25%. I was tired, sluggish and it was very tough to do anything more than walk around my house.

My cardiologist tacked on three heart medications to my daily pile of pills and restricted my work hours. Thankfully, my heart is getting better. I was scheduled for my reconstructive surgery on March 27th, but that got put on hold because of my heart issues. Before my heart problems, I worked hard to save up about 50 hours of leave. That would have been enough for my reconstructive surgery, but I had to take most of the leave since I wasn’t working and needed the money to make ends meet.

Eventually, my heart was strong enough that the doctors felt comfortable doing the reconstructive surgery. They removed my skin expander & built a new breast using an implant and some skin from my thigh. I recovered well from that surgery and was feeling better each day. As my heart got stronger, I had more and more energy and was able to work a full schedule again. My hair was growing back and I got my first haircut since starting my cancer treatments. My Oncologist pronounced me cancer free. It was wonderful news. Cancer free!

I thought everything was going to get back to normal. Only a month later, my work and family started noticing some confusion and forgetfulness. The problems kept getting worse, and I was horrified about the risk of losing my job. I saw my oncologist several times about the symptoms, but she dismissed it as chemo brain. It wasn’t until my daughters went in with me to talk to my oncologist that anything other than chemo brain was considered. My daughters pushed for an answer.

My symptoms were getting worse and chemo brain should get better with time. The doctor scheduled an MRI “to make my daughters happy.” Within a week I had the results of the MRI. Again, it wasn’t good news. The MRI showed a 35 by 25 mm mass deep in the right side of my brain. The tumor was pushing on my brain’s midline causing it to shift to the left. Worse news: the tumor is inoperable.

To see if the cancer had spread anywhere else, I had a bone scan and a CAT scan. Thankfully, the workup revealed no other evidence of cancer in my body. My Radiation Oncologist suggested a biopsy to determine the type of tumor. My follow on treatment plan was different if it was brain cancer (aka primary tumor) or breast cancer that spread to the brain (aka secondary or metastatic tumor). The biopsy carried significant risks, but without knowing exactly what kind of cancer it was, the treatment plan was just a shot in the dark.

I decided, almost immediately, to proceed with the biopsy. I met the neurosurgeon with two of my daughters and was scheduled for a needle biopsy on Sept 6, 2007. The recovery from the surgery was slower than expected, but after two nights in the hospital I was discharged. I went home complete with a new titanium plate attached to my skull.

Before I left the hospital, the results from the biopsy came in. The breast cancer had moved to my brain. I have weakness throughout my left side and it will only get worse. The doctors offered several choices in radiation therapy, but more chemo was not going to help. The size of the tumor was at the borderline for being too big for the gamma knife to give much benefit. Instead, we chose a new 3D radiation treatment.

The radiation to treat the brain tumor was scheduled for 10 days over a two week period. The treatments left me tired, but all my hair stayed put. On the second Tuesday of my radiation treatments I woke up and couldn’t move. One of my daughters was staying with me and could not get me out of bed. She called a great friend of mine who is an RN and my daughter in California. I was quickly on the way to the hospital.

Initially, the doctors thought I might have had a stroke. After lots of tests, a stroke was ruled out. Their best guess was that I had multiple seizures over the night. My son and daughter in Salt Lake and my RN friend were with me all day in the hospital. One of my daughters and her husband from California were at the hospital in Salt Lake only five hours after she got the call. I spent another night in the hospital.

I’m now on a different anti-seizure medicine and I haven’t had any more seizures. My kids are in the process of moving me to my daughter’s house in Salt Lake. The entire cancer experience has been tough, but leaving my own place is extremely difficult.

My radiation is done and I go in for another MRI next week to see if the treatment shrunk the tumor. My doctors told me I’m completely & permanently disabled. I can no longer live alone, drive, or work. We all hope for the best.

This has put a huge hardship on my entire family. My daughters are losing work and pay to be with me. One has flown up from California four times and driven up once since my brain tumor diagnosis two months ago to relieve my other daughter that lives here.

Since working as a medical assistant isn’t the highest paying job out there, I also cleaned houses to earn extra money. That brought in almost $300 extra a month. That work is now gone too.

My kids have done wonders weeding through all of the disability, social security, and insurance paperwork. I’m scheduled to get my first disability check next week, but it’s only a fraction of what my previous paychecks were. We’re in the process of selling my car to help pay for my expenses.

Cancer is an extremely difficult battle. My independence has been stripped from me. It is a terrible disease that takes every ounce of strength that I have to fight. Thank you for your time and I very much appreciate being considered for this wonderful gift.

Salt Lake City, Utah