Sometimes you must start the story by sharing what brought you to where you are today, a history lesson if you will.
Some of this story is not pretty and even includes some graphic images. I will warn you when that is coming but as we have become an even more visual society in some cases pictures are indeed worth a thousand words….
If you already know the story feel free to skip this little “Lesley History 101” lesson.
I always think of my life story now in two books or volumes. Volume or Book 1 is Lesley before cancer. Volume or Book 2 is Lesley after cancer.
Those who know me well know I have had an amazing life with ups and downs and twists and turns.
There was probably already enough in Volume 1 for a movie script, or so I have been told, but this is not an autobiography.
This is, in fact, the launching of a blog and business that I want to be an inspiration to any person who has had any life-altering event that is physical or emotional and struggled and attempted to travel a road back to their former selves or at least some semblance of their former self.
In the Spring of 2009, I was marching along with my life after moving across the country to the West Coast to start over following a painful break-up and to be closer to my sister’s family. I had a job I loved, and I had just turned 40. Time for the wonderful rite of passage, my first mammogram. Yippee!! NOT!
Mark & I on a 10+ mile snowshoe, when I already had cancer but did not know it yet!
I had heard horror stories of the experience comparing it to smashing your breast in a door among other things. The fear of the unknown is usually the most anxiety-producing aspect of any experience. At that time my fear was centered around how much this “squishing” was going to hurt.
There was none of the fear and concern that many women experience during mammograms. I did not have a family history of an aunt or grandmother who had breast cancer. I didn’t have dense breast tissue that prevented getting a good image that would present a problem. Even when I got the call that there was something abnormal in my mammogram and I needed to come back for more diagnostic imaging and a possible ultrasound I was not concerned. I drove myself and thought nothing of it.
I love the technicians. That is not sarcasm, I really do love the technicians. This one was particularly friendly and believe it or not was originally from the Chicago area like me, so we became fast “friends”. I saw her demeanor change as the test progressed and the happy, chatty moment we were sharing quickly became strictly business. This was my first inkling things were not good.
Then she informed me of two things. I would be going for the ultrasound and that the radiologist on duty was great so if they wanted to do a needle guided biopsy she would trust this radiologist with her mother, daughter, friend…that was super comforting, but I think at that moment I could not even register what was being said. I just remember being acutely aware that this did seem to be getting more attention than a standard situation.
My boyfriend Mark worked for an oncologist and I called him to tell him what was going on and that I was getting scared. I did know that some 80 percent of what may be found on a mammogram is typically benign, but I was receiving a fast track to a lot of attention and that worried me.
48 hours after that biopsy I got the call no one ever wants to get. You have cancer. My tumor was on the large side and I had some “knotted” areas in my axilla (armpit) which could indicate lymph node involvement. I learned that this meant I was already at least a stage 3.
Little did I know my life was about to change forever.
For those not in cancer “know” (which I suspect in 2018 is very few people, almost everyone has been touched by cancer in some way) there are 4 stages of cancer. 1, 2, 3, 4. That is it. If someone says they have stage 5 or 6 they are mistaken. Stage 4 is the end of the road if you have stage 4 you also have what is known as metastatic disease. Metastatic disease means cancer has spread to some other organ or body part outside of the primary diagnosis. It is a terminal diagnosis. I don’t remember who said it first but life itself is a terminal diagnosis. None of us are getting out of this alive.
DON’T WORRY THIS IS NOT A DARK DEPRESSING BLOG – I am very funny, you just must wait for a few nuggets of humor. This is also not meant to be a science class, so I try to keep it all as average Joe/Josephine language as possible, but I am happy to answer any questions in the comments if anything is unclear.
Then I learned that I needed to have a PET scan to see if my cancer was still just stage 3 or if I had stage 4 cancer. I think when all of this starts to happen you are in shock and operate on autopilot. I don’t remember crying, I just accepted it as my path and just wanted a treatment plan and to move on with getting cancer out of me. The waiting is excruciating, probably worse than the treatment because the mind goes to dark places.
I had felt a little something on the edge of my nipple several months before, but I had chosen to get breast implants for aesthetic reasons when I was 30 and that was where my incision had been, so I wanted to write it off as scar tissue. My sister’s husband was battling a rare, aggressive cancer and they were moving back to the Chicago area. There was a lot on my plate and I just could not at that moment, confront that I may have been having a health problem myself.
I remember laying there getting the ultrasound thinking that I should have done something sooner, it just honestly never occurred to me that I would get breast cancer. I mean I had volunteered at Children’s Hospital in Chicago with kids who had cancer and at a camp for kids with cancer, sort of my “get out of jail/cancer free card”. No one in my family really had cancer, how could this be? I started to beat myself up out loud and I will never forget what the woman doing the ultrasound said to me as I lay there thinking my procrastination had sentenced me to death at 41. She said, “We all face things when we are ready!”
It was the kindest thing to say and provided me with comfort and in an unusual twist of fate, my procrastination may have worked in my favor.
I was presented to a tumor board and they suggested they run the genetic testing on me because it was unusual that my cancer was so advanced based on my age. This is known as BRCA mutation and presently there are two mutations, BRCA1 and BRCA2. I was positive for BRCA2. In 2009 this was new technology and quite expensive, but I worked for a great supportive company and had terrific insurance. The test was $2000-3000 back then and now I think you can spit in a little vial and get results for under $100.
Sooooo to close the loop, that is why my procrastination paid off. If I had not had advanced breast cancer I may have never had the genetic testing. This is important because it would allow any family members to proactively know if they had an elevated risk not just of breast cancer, but ovarian cancer, colon cancer, melanoma, and a few other potential lesser risk factors. Everything happens as it is meant to and for reasons that are not clear until down the road. I would also get a “port” for my chemotherapy which means I would not have to have them poking and prodding to find veins….my veins are shy!
WARNING – MEDICAL PICTURE OF PORT AFTER SURGERY
Many people know what the choice is for someone that has the BRCA1 or BRCA2 mutation because of Angelina Jolie. You have the choice to have a double mastectomy and your ovaries removed as a preventative measure.
The results for the PET scan were good, I did not have any disease spread, I was still stage 3. Due to the size of my tumor and age, they decided to do what is known as neoadjuvant chemotherapy. This means chemotherapy prior to surgery to remove a tumor. This is done to immediately get the tumor cells under control and to measure the tumor’s response to the specific chemotherapy, to see if it shrinks and softens. I got lucky again and my tumor responded well to chemotherapy.
I had the “best” diagnosis you can get in the world of breast cancer. There are common types, Ductal In Situ, Invasive Ductal, Lobular. Then the less prevalent Inflammatory, and Papillary Carcinoma. Mine was Invasive Ductal Carcinoma – the difference between the two Ductal types is invasive has spread to other parts of the body through the bloodstream and lymph nodes, while in situ remains in a location of the breast, without spreading to surrounding tissues.
After the type of cancer, there are three other factors.
You can be either estrogen receptor positive or negative, progesterone positive or negative and HER2 positive or negative. Estrogen and progesterone are hormones and positive means the tumor responds (potentially grows in the presence of) the hormone. I was estrogen and progesterone positive which meant there were new drugs that showed promise because they would suppress my estrogen and progesterone thereby “starving” any remaining cancer cells of their hormone fuel if you will. If you are negative for estrogen and progesterone there are not these on-going therapies currently available.
Finally, you are either HER2 positive or HER2 negative. I was HER2 negative. HER2 is a gene, which makes HER2-protein receptors, found on breast cells. When they work normally, HER2 receptors control how a healthy breast cell grows. When they do not work normally the receptors tell the cells to divide and grow rapidly and without control, which energizes cell growth. If someone is HER2-positive there is a targeted therapy called Herceptin which is designed to block HER2 from energizing cancer cell growth. Typically Herceptin treatment can last up to a year after the completion of chemotherapy if needed.
So in the world of breast cancer, the “best” diagnosis is ER/PR positive and HER2 negative. Long-term survival rates for triple negative or triple positive are not as encouraging as my diagnosis so hooray again.
If you want the play by play of my feelings and consequences of each chemotherapy infusion I can get that to you if you request access.
I had chemotherapy, every two weeks. I had 4 weeks of Adriamycin and Cytoxan and 4 weeks of Paclitaxel. For a total of 8 weeks. Then I got one month off before my double mastectomy.
This is me in full chemo status….I do not have many pictures of myself during this time.