At 43, my life definitely did not turn out the way I thought it would be. I was 12 years divorced from my high school sweetheart and the man I thought I would be with for the rest of my life. I had no kids but always saw myself being a mom. I had no pets because I had lost my precious 16 ½ year old dog, Willie, two years prior and hadn’t quite been ready to adopt another one.
Until around the age of 41, I spent my career in various accounting and payroll management positions. With restructuring, I was offered a generous severance and decided to pursue a second degree in nutrition. I had always been interested in nutrition in my own life. I was an athlete throughout school and continued to be physically active and health conscious into my adulthood. I spent almost 2 years finishing that degree and just needed to do my internship.
Then came February 8th, 2012!!
A few weeks back in January 2012, I had felt a lump. I went to a doctor who wasn’t overly concerned but suggested an ultrasound and a biopsy just to be sure. In the days ahead that I waited for the results, I don’t recall being too worried because there was no way someone as health conscious as me would be ill. As I sat at a table with my good friend Ginger, the call from the doctor’s office came in and I was told I had breast cancer!! BREAST CANCER – ME??? I don’t really recall a lot right after the news except I felt bad for poor Ginger who was the first person to learn the news. What do you do or say to someone in complete shock?
I met with an Oncologist to discuss my situation. I was HER2+ ER and PR negative. I had zero idea what that meant. Until this point, I didn’t know there were different kinds of breast cancer. The oncologist suggested a PET Scan to verify that the cancer hadn’t spread and to determine my “stage.” So not only different types of breast cancer but different stages too – this was all new to me. Lucky for me, my insurance approved this expensive test and I was scheduled for one in two weeks. TWO WEEKS, I thought, that doesn’t seem logical because all I can think about is how this cancer is in my body. It was a LONG two weeks.
As a side note, I wasn’t working, I was in school and I had minimum health coverage through the school because my Cobra had run out. I reviewed what coverage I had and thought, I should get extra insurance just in case there was a major event because the $70k max I had probably wouldn’t even cover a broken leg. In December of 2011, I took out personal health insurance that would start in January 2012. January 2012 was also when the ACA’s health care began to protect individuals with pre-existing conditions.
If you haven’t guessed it yet, during my diagnosis in early 2012, the insurance company tried to claim that my condition was pre-existing in 2011 and didn’t want to cover me. My brother-in-law and another friend were advocates for me and got pro bono lawyers and even the office of an IL house of representatives involved. Once they were involved, I never had problems with the insurance company again. I am forever thankful for the pre-existing condition law and the help from my representative and you can guess I am a strong advocate for the ACA. No one should have to worry about health care during a crisis or not be covered for a pre-existing condition.
Moving forward to the PET Scan. I entered the room with the big piece of expensive equipment and the technician explained the procedure to me. It was basically laying on a table and letting the machine do the work. When it was finished, I was asked to wait in the waiting room while the doctor reviewed the scans. I waited and the technician said the doctor would like to get one more scan of my chest. My face must have said it all because she followed by saying it was uncommon for the doctors to ask for more pictures. I don’t envy her job and appreciate her attempt to assure me, but I knew in my heart this was not good.
I left that test knowing it had spread but as it goes in the early stages of breast cancer you once again – WAIT. I don’t blame anyone for the waiting but I can tell you it is agonizing. I think about a week later, I was in the Oncologist office with my family around when the doctor announced that it looked like it had spread to my lungs!!!! The only way to confirm was with a biopsy but that needed pinpoint accuracy with a needle otherwise it meant a major surgery just to confirm.
As you guessed, more waiting, and a week or so later I was put under in hopes that a surgeon could get a biopsy with just a needle. I was “lucky” and this doctor was successful so no major surgery but his biopsy confirmed I was now a Stage IV breast cancer patient. I do recall at times having strange detachments, like I was watching all of this happen to someone else.
So now comes the treatment options and all the reality that goes along. As superficial as it is, I could not deal with the fact that I would lose my hair. My hair has always been very long since high school and I couldn’t come to grips with losing it. So many things to worry about and my hair was huge. I don’t have an answer for that but can say after the fact – it is hard because you look like a cancer patient and it’s hard to hide. It’s hard to be “normal” when you don’t feel like you look normal.
I also was told I had to have a port “surgically” put in my chest so I can receive my treatments. It was a hard reality for me to accept that this port would NEVER be removed, only maybe replaced. Most breast cancer patients have an “end”. They stop their meds at some point, have the port removed and hope the cancer does not return and I hope that for them too. I had to accept that I never got an “end”. After the heavy chemo through the summer, I was told I would be on maintenance medicine every 3 weeks for the rest of my life!!! I hated the port. I still don’t like it but I have made peace with it. I’ve learned to dress to cover it. It’s like the hair for me, it’s just not “normal” and people can’t help wondering about it.
Back to the hair. I started my weekly treatments in March and by about the 3rd one, I noticed my hair was falling out in larger amounts. I had made a decision to let it fall out because I couldn’t have it removed but when it started falling out, I couldn’t handle that either and now had to make a choice and neither were good. I had my head shaved right around St. Patrick’s and I was able to donate my hair. I’m glad it was donated but the experience was devastating and I can still feel it as I write these words. It’s not just hair. It’s so much more than that and for everyone it’s different. For me, this was tough!!
Weekly treatments continued for about 4 months. Physically I did really well for quite a while. So much so that the doctors and nurses were impressed. However, around the 3 months, the reality of my new life set in and over took me mentally which then I believe led to me not doing physically as well. Looking back, I wish I wouldn’t have let it get me but it did. I didn’t know if the meds were going to work, I was always going to need some kind of meds the rest of my life, I’d be doing tests every 3 months and mostly I didn’t know if I’d survive or for how long. If I did survive, what was I going to do with my life? What job would I get that would accept all the medical absences my new life would now require?
I got so depressed and withdrawn. I finally agreed to take a heavy dose of anti-depressants. Needing those made me feel weak but looking back now, they saved my life. I learned it took strength to accept help. This was pretty much my rock bottom.
Over the next few years, I would have two lumpectomies and two radiation treatments for spots on my lungs. I had to have surgery to fix an eye duct that was blocked due to my chemo. Throw a hysterectomy in the mix (which had nothing to do with the breast cancer). However, 12 ½ years later, I’m still here and thriving.
I’m still considered a stage IV breast cancer patient. I go to the hospital every 3 weeks to get maintenance meds through my port. The positive is the current meds do not cause my hair to fall out. I have to get CT and Bone Scans 3-4 times a year. I have to get and ECHO every 3 months to check my heart because my cancer drugs could damage my heart. I have to meet with a liver doctor because my meds may also be causing stress to my liver.
I used to get anxiety waiting for the results of the CT and Bone scans. Over time, I just learned to relax and try not to worry. I learned to not let cancer define me or control every aspect of my life. Yes, cancer had definitely changed my life and to some extent does have a lot of control but I’ve learned to make the best of the remaining parts.
It took a long time and a lot of ups and downs to get to where I am today. I had wonderful support from my family and friends. I have had a great team of doctors, nurses and other medical staff. Even with all those blessings, it was not easy for me, and I’m sure, not easy for all those people who stood by me. I am grateful.
Today, I live my life like I don’t have cancer. I don’t talk about it or give it my time (except all my appointments) or attention. However, I am not opposed to talking about it. I am happy to answer any questions anyone might have and don’t get offended. So, if you reading this and you want to ask me questions, it is ok, just ask.
My life didn’t turn out at all as I planned and, of course, I would change a few things if I could, but when I look at the life I live, I try to be grateful. Grateful for everything I do have, grateful for what I am physically able to do and grateful for the good people in my life. This illness has taught me not to sweat the small stuff, say yes to everything (within reason) and not to live in fear or with any regrets.
