The Good Cancer
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I had to feel it to get through it. That was my mantra over and over again after Kevin died, and grief was so new and raw to me. These were all fresh and brutal emotions for me to process, and I had to take time and space to learn how to deal with them.
After he died, I remember re-entering the workforce as a nanny, then as an administrative assistant, and needing to find quiet, isolated places to cry and grieve when, at (what felt like) all the wrong times, grief would sneak in like a viper and bite. The bathroom or my car was often that space. I hadn't accrued any leave time, so once I went back to work, there wasn't much flexibility, and there definitely wasn't any financial stability to take a mental health day. And in 2008, that wasn't something we were talking about either. The mentality was - power through.
I eventually found therapy thanks to a dear friend - a sliding scale practice who offered EMDR (Eye movement desensitization and reprocessing), which was life-changing for me to process the traumatic parts of loss. Like the hospital scenes. Fast forward 16+ years, and now it's me who has been given an unexpected cancer diagnosis after a year of symptoms that don't add up, numerous tests, many doctors, and often feeling like I've been chasing a ghost.
When I read the pathology report after a lymph node excision (removal) in early January, I turned to Dave, my 2nd husband, in bed next to me, and woke him up. It was early. I said, "I have cancer." Full stop. Tears. Breakdown. Sobbing. Uncertainty.
I re-read the words to him to be sure, and sobbed in his chest like I had lost all hope. I felt so defeated. I had said for many years - possibly too frequently - that I always suspected I would get cancer at some point in my life. Most likely saying it to be less surprised if I ever were to get diagnosed. My way of "prepping". My genetic history isn't exactly light on cancer history in my family. I feel like everywhere I look the 'Big C' is lurking. I said this out loud - thinking if I ever got it I'd get cancer in my 60s. 70s if I'm lucky. Not thinking 40. Definitely not thinking 40.
Yet after the sobs subsided and I began my research, as I always do (and am always going to do), it all added up. A lot of what I had been experiencing, for as long as 5 years ago, could be correlated to the diagnosis of metastatic papillary thyroid carcinoma.
While the planning for necessary surgery ahead, second opinions, tests, and Dr visits have all been overwhelming, it's been a new routine that I have gotten used to over the past year. In fact, I get less bloodwork now than I did in the 6 months before my diagnosis, and my veins thank me for that. The more overwhelming piece has been the unprocessed trauma and grief of losing a spouse to a rare and aggressive cancer, and all that would bring up with my own cancer diagnosis.
Logic and research tells me that this cancer is "the good cancer" (I call absolute BS on this BTW because it's totally shit). It tells me that the classic type - my initial diagnosis - is in the high 80%-90% 5-year survival rate. Logic and research says it's slow-growing. Logic and research, and my expert surgeon at Penn Medicine (University of Pensylvania) Philadelphia, tell me that I must wait 3 months for the surgery because I have to allow my lymph node excision scar tissue to heal before another surgery, and that this will be OK and will not put me in danger. But my brain. My trauma mind. The one that survived so much in my early 20s says - do more, worry more, this is scary. People die from cancer. People you love. And that stuff has been some of the hardest part of this journey.
When Kevin was sick, he was adamant that he did not want to know statistics about his type of cancer. This was so difficult for me as his wife, and is probably why I now enjoy medical research and spend far too much time on it. I want to know the ifs, ands, or buts. Because even though deep down we knew his cancer was deadly, it wasn't until the night before he passed that he, and I, finally accepted that prognosis. And I felt so unprepared for his death; even his doctor expected him to live a few more weeks. I do not want to be unprepared. I want to know how to plan. And that's what sucks about cancer.
Cancer has no plans and it doesn't care about yours. It doesn't care that I'm 40. It doesn't care that I've lost a spouse to it or that both my parents suffer from it. It just takes and takes. And I can't change the outcome. Even with the research I do to plan ahead and for future outcomes, cancer still surprises me.
After my thyroidectomy, central neck dissection, and modified right neck dissection on April 16, where they took out 42 lymph nodes, there were surprises. Cancer was found in 2 nodules in the thyroid, in the shoulder muscle, 19 of the lymph nodes and the thyroid bed tissue outside of the thyroid. Pathology came back 2 weeks later and showed my thyroid had 2 cancerous nodules- 1 with classic type - expected - and the other larger nodule with tall cell variant - not expected. Surprise. A variant I had not researched and knew nothing about! So back to research. Rare. Aggressive. Can metastasize. Resistant to radioactive iodine.
This time, I researched the Tall Cell Variant a bit less. Because I don't know for sure how much is in my body. And there's not much information and research available, which is also scary. My surgeon and endocrinologist confirmed the new variant and that at least 30% of the cells were the Tall Cell Variant. More bloodwork and a scan will be needed before treatment. There is uncertainty about enlarged nodes that were found in my lung before the surgeries - all we know is that they have grown since last April. And I've come to recognize that I can't research this away.
I have to focus on healing and recovery. Distraction seems much more fun. Like doing productive things within my activity range. Making me feel like a useful member of society. Proving my worth even while I'm not working. But I get tired quickly. Nap for 3 hours at a time. Pull shoulder muscles quickly. Can't concentrate enough to read more than a few pages of a book. Make constant, simple errors. Brain fog. Acne flare-ups. Rashes. Discomfort. My new normal. Maybe not forever?
Recently, during therapy, I was reminded that my worth cannot be based on my productivity. This is something that my therapist has been working on with me long before my diagnosis - discovering my purpose and joy. And now having been off work for almost 5 weeks, I don't feel productive or accomplished; I have always tied my success to career, service, or academic achievements. My achievements now are to recuperate, relax, live, fight cancer, and follow doctors' orders. And none of this feels like independence to me- something I vitally crave.
I am starting to understand why the cancer diagnosis isn't just a physical one of cancer cells, and my trajectory may not be the same as some others who have thyroid cancer. And their journey isn't the same as mine. We should respect, honor, and listen to those differences because we all come into these experiences with a mixed bag of history.
I have to feel it to get through it. Just like my mantra after Kevin died.
Lately, I keep thinking that I was once worried I'd die from cancer. Now I'm worried I have to live with cancer.
And I'll be honest, I never once thought about a long-term battle with the "Big C". I don't know why.
My Dad has been fighting cancer off and on for over 20 years. I can't imagine, and I know it hasn't been easy for him or my mom. In talking to my Mom, I've had to face the fact that this new variant means a reality that I may live with cancer for a long time. When people tell me this is the Good Cancer with a great outcome - I want to yell. Because they don't know. Because there is nothing good about this. Shifting my perspective to acceptance is going to be hard. I am not there yet. I don't know when or how, that will come. My mixed bag of cancer history makes my feelings about this diagnosis really tricky.
I see others who are strong and fight and look like champions - and I'm just not there yet. I'm barely 5 weeks post op, 5 months since diagnosis, and waiting on some important next steps. I feel very much in survival mode, and sometimes that's the mode we need to be in to get through the dark days. When I thought I would get cancer in my lifetime, I never expected this. It's both not nearly as bad as I expected physically, and yet it is so much more emotionally draining than I could have ever anticipated. And no amount of my preparing for it made this emotional piece any easier. That's the sour part of this bitter pill. Expecting the worst, having some of it come true, and then still feeling unable to handle it. Cancer has stolen so much from me in my past. So much. I don't want it to steal my future.
And that's what I can change going forward. As I shared before - my therapist has been challenging me to find my joy and my purpose. And I have been so unsure about what either of those things looks like. My purpose has always been tied to the service of others and my career. Now that I'm on leave, the answer to that question looks a little different.Where's my joy? What's my purpose? That's the journey ahead as I learn to live with cancer. And myself.