Local woman shares breast cancer story
EDITOR’S NOTE: For Breast Awareness Month, the Texarkana Gazette asked several local women who are battling and are triumphing over it to share their stories. This story features Lydia Kahler who was diagnosed with Metastatic Breast Cancer eight years ago. Look in this month’s HER Magazine, a publication of the Texarkana Gazette, for more survivor stories.
By Lydia Kahler Special to the Gazette
I was first asked to share my breast cancer story in 2013, it was about a year after my diagnosis.
I wasn’t one of those “lucky” ones where “it was caught early.”I was diagnosed stage IV denovo, which means I already had Metastatic Breast Cancer from the start. Only around 8% of newly diagnosed breast cancer cases are stage IV from the start. Approximately 20%-30% of early stage breast cancer cases will at some point have their cancer return as metastasis.
You may wondering what is “metastatic”? Breast cancer is staged 0-4 depending on the size of the tumor and if it has spread outside of the original tumor to the surrounding area.
Metastatic, or stage IV breast cancer, has spread out of the original tumor to other distant sites, such as the bones, liver, and brain. Even one small cancer lesion is considered stage IV.
The latest information says that there are approximately 168,000 women living with Metastatic Breast Cancer.
In September 2012, I was 35 years young, married to my husband Jason for 17 years, a mother to Haley 14, Chase 12, and Landon almost 5 , and working as a full-time RN.
I was just living life, taking care of my family and enjoying watching my kids grow. During the summer of that year, I experienced gradually increasing back pain with little relief from various interventions.
After a couple of months, that back pain eventually led to an MRI that revealed metastatic cancer lesions all along my spine. I sat in my doctor’s office with my husband as he told me the news that would change the course of my life drastically. He was just as shocked and saddened as we were.
Over the next week, further testing found the source of the cancer in my right breast. I had three small tumors that I never knew were there.
A mammogram isn’t even a standard test until over 40 years of age and I was five years away from that point. I had gone through a breast reduction about 10 years prior to my diagnosis. This left me with various lumps of scar tissue that I didn’t know how to differentiate.
Hindsight is 20/20 and I know now that regular self breast exams can at least tell you if some of those lumps and bumps have changed and need further investigation.
A breast biopsy was done and the results revealed it as triple positive Invasive Ductal Carcinoma, which was at a Stage IV due to the metastasis. I was suddenly faced with a million unknowns and scared to death of not only what would happen to me, but how this would affect my husband, my children, all of my close family and friends.
I really struggled for a long time with why a good and just God would put this terrible burden on me. I’ll admit that I’m not a regular, twice on Sunday church goer, but I am a believer.
I had to believe in something. I had to believe in the thousands of prayers that were going up just for me. I had to try and understand that this was my path, no matter how bad it seemed at the time.
There is a saying that I like to refer to when people say that I’m one of the strongest people they know. That saying is “You never know how strong you are until being strong is your only choice.”
Well, I’m really not that strong. I have had countless days of lost hope, contempt, anger and sadness for this new life that replaced my much better life before cancer.
I was and continue to be as strong as I can be for the sake of my children. I couldn’t stop being their mom just because I was sick. I tried hard to hide the pain and tears but it was all just too overwhelming, so sometimes we cried together.
I have been so fortunate to have the very best supporters and cheerleaders.
My husband has refused to let me sink down too far into sadness. He allows me the time I need to grieve, but is always quick to help me pull myself back up.
Around three weeks after my official diagnosis, I was still awaiting a consult with my oncologist when something in my back popped and the pain was too great to even stand up straight.
The following day my husband drove me to the UAMS Emergency department where I had more scans and found that two of my vertebrae had fractured due to lytic lesions, which are are cancer lesions that eat through the bone.
This was my first of several hospital stays I have had during these eight long years. I was there for 10 days to repair my fractured vertebrae, repair a golf ball size hole in my right hip, surgical placement of an implanted IV port and to recover from the surgeries.
I was able to start hormone and adjuvant IV therapy, but had to wait to start chemotherapy until I had healed longer from surgery. I started IV chemotherapy and radiation to my spine in December of 2012.
The chemo was harsh and difficult to tolerate, but there was too much good in my life to give up hope. My oncologist wanted me to continue this every three-week regimen for a full year.
Many times it seemed impossible and I shed more tears than I thought were possible. I was so sick, I lost my hair, my eyebrows, my eyelashes and a majority of my physical strength.
I honestly don’t know how I was able to keep going week after week. I had the most amazing support from friends and family. Without them, I really don’t think I would have been able to get through some of my worst times. These amazing friends, family, and community of mine rallied around me and arranged fundraisers, meal trains and anything else I needed.
After around three to four months of this treatment plan, I had a PET scan of my body to check on the efficacy of my treatment. Amazingly, the scan showed a significant improvement in the more than 30 bone lesions throughout my skeleton.
Within eight months, my PET scan showed a complete response to treatment and no active signs of cancer in my bones or liver. Given the extensiveness of my cancer, my doctor still wanted me to complete the full year of treatment, so I did.
After a year of chemo my scans still showed no signs of active cancer. I slowly regained my strength, but the chemo had taken a lot out of me that I would never get back.
I remained on the non chemo infusions every three weeks. Six months after my chemo was completed I was strong enough both mentally and physically to return to work on a part-time basis.
I returned to working in the place that I loved dearly, the Nursery and NICU at St. Michael. The work days were much longer and harder than before, but I was so very thankful that I was well enough to return to what was one of my life passions. After returning to work I continued to receive the non chemo IV infusions every 3 weeks.
The balance between work, family and rest was tough, and sometimes I regret not giving enough of that time to my family. I still technically had terminal cancer but I was actually beating the odds and the cancer.
My wonderful Oncologist often refers to me as his miracle. He never spouted out death and survival statistics, or put an expiration date on me. He has always been my advocate and is willing to keep on treating me as long as possible while still giving me hope but with the truth.
As cancer almost always does, it reared its ugly head about four years after my diagnosis.
I experienced some bone progression, just enough to know that it was time to find a new treatment. I started this new treatment and tolerated it well until it stopped working after a year.
The exact dates are a blur but over the years I experienced some bone “flare ups” that caused pain and or worry of spread. I went through multiple rounds of spot treatment radiation to zap those active spots. I was tough, or at least I like to think I was.
Sometimes my treatments coincided with my work so I would take off for the hour or so it would take for the radiation and I would go right back up to work.
Somewhere around April of 2017 things started to get a little harder. I experienced a fractured right femur that was most likely caused by an over use of the IV bone strengthener I was receiving. Imagine that!
Over the course of a week I noticed a sharp pain in my hip that grew each day. I am stubborn, so I continued to hobble around at work until the pain was too much.
After an X-ray and a CT it was revealed that I had a fracture in my right femur. Off I went to UAMS by ambulance where my amazing orthopedic oncologist fixed me right up with a titanium rod. The recovery wasn’t easy but I did it and managed to go back to work yet again. I won’t claim to be overly devoted to my job but it did give me a sense of purpose.
After all I was only 40 years young and it just didn’t feel right to not be working with the degree I had worked so hard to earn. It also didn’t feel right to not have a paycheck. Our household relied on my husband and I both having an income. It hurt a lot financially to miss paychecks when I couldn’t work and to not be able to have full paychecks because my body just couldn’t handle full time hours.
Cancer is devastating in so many ways and financially is right up at the top.
After several years of being mostly stable, suddenly I was not.
My cancer was growing and moving as I tried an additional three different treatments in a row that I didn’t respond to. The cancer was in my liver again after having been eliminated with my very first treatment of chemotherapy. It was decided that a liver biopsy would be in my best interest to see if my cancer hormones had changed and testing of the tumor could possibly define a more reliable treatment option .
My testing showed that I would better respond to starting on a chemotherapy rather than the other non chemo drugs. My doctor choose an older chemo that was mostly well tolerated. I started this new chemo in November 2018.
Coincidentally, I started having pain again in my right hip. It was hurting bad enough that I was compensating with my left hip. An X-ray of my previous fractured right femur showed a few bony growths that would explain my pain. Within days the pain switched over to my left hip and it worsened over several days until yet again, I had another fracture. This time it was my left femoral neck.
This required more than a titanium rod. Since the fracture was higher up, I required a partial hip replacement. I was 41 and having a dang hip replacement!!
My body was so beaten down at this point and the surgery and recovery was tougher than anything I had already experienced. After I completed my physical therapy I wasn’t physically strong enough to endure 12-hour nursing shifts.
My “chemo fog” and fatigue were also present enough that I didn’t feel safe working as a nurse. It was a hard decision, but one that I knew would be the best considering my physical abilities had greatly declined.
It’s been almost two years since that experience and I still require the assistance of a cane to walk very far. A lot has changed in my life, for the good and the bad.
Most importantly I have been able to experience many of the milestones I never thought I would be here for. My baby who was just turning 5 the weekend I was diagnosed became a teenager last Wednesday. I wasn’t able to go to every event my kids had but I tried to as much as my body would allow. I was able to see my two oldest graduate high school and both are currently attending college.
I have been able to give my kids a mother during so many instances when that’s all one needs.
This past June my routine PET scan showed that the chemo I had been on for the last year and a half was beginning to fail. My doctor wanted to start me on a newly approved chemo.
Just before I was ready to start the chemo, I had a fall that resulted in me breaking my distal radius (wrist) in three pieces. I had to have another surgery to repair it.
Since chemotherapy can impair the healing process, I had to hold off on starting the chemo for a couple of weeks. I was finally able to start the new chemotherapy in July and it has been really rough. I’ve experienced almost constant nausea and vomiting.
So far I have had three of these treatments that are scheduled every three weeks. The vomiting has been so bad that I’ve had to have hydration therapy and electrolyte replacement before being able to get the next treatment. With all treatments it’s important to check on the efficacy as well as having a decent quality of life. The current plan is to have a PET scan after my fourth dose, which will be at the end of October. I’m really counting on this treatment to work, as it is my seventh line of treatment.
There are a number of different medications to treat breast cancer, but they don’t all work for all types of cancer. Cancer is treated based on the type and the hormone content. Another thing to know is that one medication may work for some people but not for others even with the same type of cancer.
Cancer research has been going on for decades, yet there is still so much to be learned. There is no cure currently for cancer. A person with Metastatic cancer will never be in remission or cancer free. There is always the hope of becoming NEAD, which is no evidence of active disease.
Millions of dollars are raised every year across various organizations for cancer research. Sadly only an estimated 2-5% of funds raised for breast cancer research is spent on studying Metastatic Breast Cancer.
Metastatic Breast Cancer is the only breast cancer that kills. The cancer cells over power the healthy cells and eventually cause complications such as liver failure, lung disease, and brain dysfunction. Each year around 200,000 Americans are diagnosed with breast cancer.
In the U.S. someone dies from breast cancer every 14 minutes, and this number has not decreased significantly in the last 40 years. That equates to around 40,000 breast cancer deaths per year. Metavivor is an organization that is run mostly by those living with Metastatic Breast Cancer.
I highly recommend this organization to donate to should anyone desire to contribute to Metastatic Breast Cancer research.
October is Breast Cancer Awareness and prevention month, and needs to move towards more research than awareness. October 13 is set aside to recognize Metastatic Breast Cancer.
I have been living with MBC now for eight long years. Statistics say that I have around a 20% chance of surviving past 5 years. I refuse to be a statistic and aim to far outlive that prediction.
At age 43 I never thought I would long to hold a grandchild, but here I am, just praying that I can continue to have the upper hand with this disease and live many many more years.