If I Knew Then…. What I’d Tell My Pre-Cancer Self by Pam Sachs
I’ve always heard the saying, “If only I knew then what I know now!” Like most people, I’ve had this thought plenty over my 30-something-year-old life. For example: “Gosh, if only I could go back and tell myself how silly I looked that whole year of middle school when I refused to wear any color but shades of blue!” It was my signature color, after all. Still, it’s strange to finally have the opportunity to pen a letter to yourself detailing the things you wish you would have known, particularly through the lens of a cancer diagnosis.
First and foremost- some background for those who don’t know me. Hi, my name is Pam! I am a young adult living with chronic leukemia called a myeloproliferative neoplasm (MPN). MPN’s are considered a rare cancer. The Leukemia and Lymphoma Society estimates that only 20,000 people are diagnosed with MPN per year. Rarer yet, this disease is typically considered a geriatric disease- often diagnosed much later in life. So how did a 30-something-year-old end up with it? Well, isn’t that the question! I guess I’m just the proverbial rare diamond in the rough. I was diagnosed in 2020, although it is likely that I had been living with it for 7+ years undiagnosed. In fact, I have blood work dating back to 2013 showing consistently high numbers. Crazy, right? You might wonder how that’s even possible. Didn’t you have symptoms? Couldn’t your doctors see anything was wrong? Sure! However, at the time, I did not realize how important it was to advocate for myself.
[FLASHBACK TO 2013]
I was two years out of college. I worried about the same things most 20-somethings fresh out of college are concerned about: What am I going to do with the rest of my life? Will I ever get a full-time job instead of trying to live off three part-time jobs? How am I going to pay off my student loans so I can get an apartment and move out of my childhood home? And my biggest running concern: which bar are we all going to on Saturday? Cancer concerns could not have been further from my mind at 23. However, little did I know that a switch had flipped somewhere in my body around the same time. My bone marrow was losing its ability to moderate the number of cells it was producing. This overproduction of blood cells is exactly what would be picked up on routine bloodwork over the next couple of years.
[FOUR YEARS LATER IN 2017]
Cancer came crashing into my life for the first time when my father was diagnosed with Pancreatic Cancer. I was 27, just married- a newlywed of 4 months still riding my post-honeymoon high. Once again, the concern of cancer could not have been further from my mind… until it wasn’t anymore. As most of you who have encountered cancer diagnoses know- whether through yourself or loved ones- cancer does not care if you are ready for it or whether its timing is convenient… it makes itself known anyway.
My Dad seemed to be the model cancer patient. He did well on treatment without suffering many side effects and did (mostly) everything his oncologists told him. They were optimistic we had caught it early. After a 6-month course of chemo, they thought we had gotten it all. Our highest hopes were that he would be part of the 10% of pancreatic cancer patients who reach a 5-year survival rate. However, his first three-month scan revealed the complete opposite. He had a recurrence- this time in his liver. Preparing myself for the battle that was to come, I made the heart-wrenching decision to move home to New York to be with my family. For the first time, cancer started to occupy prime real estate in my mind.
As my Dad bravely battled, my symptoms were also getting worse. I started to notice the fatigue getting more debilitating, the headaches coming more frequently, the itchy, scarred, and bruised up legs getting more persistent. At the time, I chalked it up to stress, not realizing they were all tied together somehow. Around the same time, a PA from my doctor’s office started questioning my consistently high platelet levels. She even had the foresight to begin tracking them semi-regularly. However, her more cautious approach to investigating my blood abnormalities were discounted by the PCP, who assured me that my platelets weren’t high enough to indicate a real issue. Eventually, I was declared just one of those outliers who run abnormally high.
After losing my Dad to cancer in 2018, I realized the full extent of what cancer could do and it became an ever-growing concern in my life. Who would I lose next? What if I had cancer? What if my dog had cancer? I became hypersensitive about listening to my body. I brought up every minor symptom to my doctor. Yet I was told repeatedly by doctors and nurses, friends and family, alike, that I was fine. YOUNG PEOPLE JUST DON’T GET CANCER! …. Or do they?
[FAST FORWARD TO DECEMBER 2019]
My husband and I had just closed on our first house. Part of me was hoping (and halfway expecting) for karma to lock us in on easy mode for the foreseeable future to make up for the past two years. We had already made our lemonade out of lemons. It was time to hand us some fresh flowers, GD’it! However I still couldn’t shake that nagging feeling that something was seriously wrong inside of my body. My generic symptoms continued to become more pronounced. My platelet levels continued to rise, and a new symptom- a dull persistent pain in my abdomen started to freak me the heck out. I finally realized that I could not keep hoping for the best. I needed to take control of my health. Eventually, an honest afternoon discussion with a girlfriend at my newly acquired kitchen table kicked my butt into high gear. Soon after- I established with all sorts of specialists in my town after thoroughly researching and self-referring. It took all of about 5 minutes with a hematologist for her to suggest myeloproliferative neoplasm. That same visit, she ordered specialized blood work to identify one of three driver mutations often present in the disease. After that came back positive, I was immediately scheduled for a bone marrow biopsy to confirm. Once I met all the diagnosis criteria- it was official: I had a myeloproliferative neoplasm. I had cancer- at 30. This was my worst fear come true. This was the thing I didn’t think I could handle after losing my Dad to cancer just a year prior.
[HARD STOP]
This is the point in my story where I’d like to address my past self and let her in on a few things.
- You’re not crazy. All those feelings and symptoms that you thought were “your normal” was actually your body trying to clue you in to something foundationally wrong. No matter how many people brushed you off, assuming you were just a paranoid hypochondriac, you were right. Always trust yourself.
- Understand the importance of advocating for yourself. No one else will do it for you. Never stop questioning what is best for you. Doctors are great, but they’re human, and no one is perfect. Continually encourage others to do the same by sharing your story.
- Cancer is scary, but it’s not a death sentence. Cancer is a monster that wears many different masks. Your dad was diagnosed with one of the deadliest and most aggressive forms of cancer. Is that fair? Absolutely not. But not everyone diagnosed with cancer follows the same path. Each person’s cancer journey is unique. It is a battle- filled with custom highs and lows. Your cancer is progressive but chronic and extremely manageable. MPN’s are relatively low maintenance when stable. Realize how lucky you are. There is a good chance that you die with your cancer rather than from it.
- As isolated and lonely as you will feel over the next few months, you will find your people. They will change your life positively. There is no question that this diagnosis will test many relationships. Some people will step up, while others step away… and that’s OK. You’ll create a bubble of support and meet some amazing souls who wear similar shoes. Local support groups- both disease and age-specific will arm you with a wealth of knowledge. Life will finally start to make sense, and you will realize the importance of giving back.
- Buy stock in GameStop, don’t ask why. Just do it.
- Lastly, you are more resilient than you have ever given yourself credit for being. You’ve made it over 100% of the obstacles presented in your life thus far, no matter how impossible they looked from where you were standing. You will get over 99% of the rest of them. The day you stop believing in your ability to be resilient is the day you stop winning.
