I realize that the anxiety some of these posts may cause, so without further delay I’ll get to the…
I had my 1 year scans (CT of abdomen, chest, pelvis and Brain MRI) and blood work about 4 weeks ago and received the results later that week. That whole week of tests and appointments was terrible but scan-day was the most traumatizing. I cried like a child who’s trip to Disneyworld got canceled at the last minute. Fortunately, we got excellent news that at 1 year, my scans showed No Evidence of Disease (NED)! While the statistics for 5 year survival for someone in my situation are pretty grim [65% for stage 3b treated with ipi], we all (including my oncologists) feel that my chances of survival are better than this for a multitude of reasons. Also being NED at 1 year is an important prognostic marker. All of this is good news and puts me in a good position moving forward. I will continue to have scans and blood work every 4 months for the following year to make sure there is no cancer recurrence. I was hoping that this news would bring about feelings like joy and relief, which it did. But unfortunately these positive feelings were fleeting and quickly replaced by a familiar wave of anxiety, doubt, fear, and uncertainty.
I am learning that survivorship is a very tumultuous state of being. I can understand how my reaction may be confusing for someone who hasn’t faced a cancer diagnosis personally. I myself didn’t understand my own feelings at first; shouldn’t I be celebrating that I am currently “cancer free”? Shouldn’t I be less worried than I was 1 year ago? Shouldn’t I just be grateful to be alive? Why can’t I just trust my scan results? I desperately want to feel these things, and I am working hard to get there but I realized I have a lot of processing and mind body healing to do first. [side note: I am doing much better since I started writing this post 3 weeks ago]
Fear, Doubt, and Anxiety
Let me explain the why I have these feelings: I have been traumatized. This whole journey started with a misdiagnosis 7 years ago. They took a biopsy, they said it was benign, they were wrong. Just in case they removed the mole with wide CLEAR margins. Even if my early stage melanoma had been diagnosed correctly, the fact that it metastasized to my lymph nodes puts me among the 3-5% of people for whom that happens. Unlucky, for sure. Fast forward to Spring of 2016, I was told by 3 DOCTORS that the nodule under my arm was benign. After an ultrasound, one of them even said verbatim “YOU DO NOT HAVE CANCER.” They told me I didn’t need to remove it and that doing so would only be for cosmetic reasons. Well, there was a little voice and a terrible feeling in the pit of my stomach that said, this is not normal, get this thing out of you now. So I had them cut it out of me and it turned out to be fucking stage 3B melanoma. Maybe now you can see why it’s difficult for me to feel at ease when I’m told I have “NED”. Initially my skepticism is what actually ended up saving my own life, so this is why I am having a hard time turning it off, even with medical technology and basic logic screaming at my face.
On top of this, Melanoma is notorious for its ability to recur and metastasize, which at my stage is considered high-risk. This risk is the whole reason I had adjuvant immunotherapy. Technically I was NED after my surgery last July, but because the risk of recurrence is so high, they recommend systemic therapy to lower that risk. In a small percentage of patients, Melanoma has the ability to lie dormant and then can recur even after 15+ years of being NED. My oncologist could not give me any statistics for my chances of recurrence, just the basic 5 year survival (65%). This is part of the reason I will still be having scans and blood work every 4 months this year. I could be cured or the cancer could come back in 4 months or 6 years. We will never really know, so in that sense it feels like there is never really good news, just the absence of bad news.
As you can see, there is a great deal of uncertainty moving forward. When you are undergoing active treatment for cancer you have a plethora of resources ( daily/weekly appointments with your healthcare team, blood draws, massage therapy on sight, friends and family support, meals, etc). While time consuming, it was comforting to know that I was being watched so closely to prevent bad things from happening. In my newfound 4 month intervals of freedom it is difficult to quell my nerves when a new symptom pops up. I am supposed to be vigilant to watch my body for any changes or signs of recurrence while also avoiding turning into a complete hypochondriac. Before my last set of scans I was feeling particularly short of breath at brute practice one day and the thought popped in my head for a split second that it could be because maybe there’s a new tumor in my lung. This thought of course spurred a small anxiety attack, which made said shortness of breath worse. I was able to calm myself down pretty quickly and later dismiss the tumor hypothesis, but just the fact that these types of fears and symptoms aren’t completely irrational is a bit unsettling.
In addition, when I was in treatment I felt like I was doing something very proactive with my time – I was actively fighting cancer and I felt so much strength and support from those around me. Nobody prepares you for after-treatment or “surveillance.” I am in the same state as I was last year—NED—but now I just have to sit back and hope that the cancer hasn’t returned or doesn’t recur. It’s hard for me to sit here with the weight of uncertainty and not be able to do anything about it. Those of you who know me as an athlete, know that I’m aggressive, that I play with passion and heart, that I’ve spent a majority of my life sacrificing my body to catch a flying piece of plastic or prevent a ball from going in a goal. So when my life is seemingly on the line, I want to do everything I can to save it. Sitting on the bench is hard both in sports and in life.
Sunshine and happy shit
BUT I AM GETTING BETTER! I continue to see a therapist and psychiatrist who have helped me understand that what I am feeling is not abnormal for cancer patients and survivors. It is actually well documented that cancer patients often suffer from some form of depression or anxiety after active treatment ends. Even though I am in NP school, I didn’t realize I was traumatized or experiencing PTSD until they spelled it out for me. Normalizing these feelings helps me with acceptance and allows me to move forward. Denying these feelings or my experiences backfires in a big way (which unfortunately is seen first hand by those that love me the most). I am also doing a lot better at dealing with random “symptoms” that pop up. By symptoms I mean stomach aches, headaches, and moments of being breathless. I remind myself that I am a god damn health professional and I can usually rule out cancer being the cause right away.
As you can see, I feel like my fight with melanoma is far from over. I do not consider myself a cancer survivor yet, and I’m not sure I will for a number of years, but I hope to get there both physically and emotionally. Taking the time to process all of these emotions and feel these feelings has been hard but ultimately, really good for me. In fact, every day I feel a little bit better, a little bit more hopeful. Sure I have my bad days now and then, but ultimately I feel like I am growing stronger emotionally and physically every damn day. Getting back into an everyday routine has been extremely helpful. My 3 week intensive clinical rotation and the VA was amazing and the Brute Squad season is well underway and has been therapeutic for me in every way.
What can you say to me (or anyone fighting/surviving cancer)?
People have asked me how they can support me or even just what they should say to me. This is a great question. At first, I didn’t know. What I have realized is I am averse to people who say “congrats on being cured/in remission”, “I know you will be fine” or something along those lines. Firstly it’s false for all the reasons I explained above. Secondly it implies that you can see the future, which you can’t and last time I was told “you’re fine” it was cancer. Thirdly, it discounts what I am and have been going through. If you have said something like this to me, please don’t feel bad because I understand you were trying to support me and had good intentions. Also, like I said, I didn’t even know what would have been helpful initially. Now that you and I know all of this, here is something helpful that you could say to me (or to another cancer person who feels the same way): “I am so happy to hear about your good news so far, and I am still with you for whatever the future may bring moving forward.”
Also, when someone says “congratulations” to me without context, I get very confused. I don’t know if you are congratulating me on my engagement, my ability to still be alive, or the fact that I took a shower this morning. Maybe lets just avoid that word all together, for now. A good rule of thumb for me is to be clear or direct with any question you are asking: like “how is the cancer thing?” is actually way better than “how are you doing?”
disclaimer: I may be unique in this respect, so the above paragraph does not necessarily apply to all other cancer patients.
I’d love to write a blog post entirely dedicated to talking to cancer patients/survivors if I can find the time in the future.
It has been so wonderful to reflect back on all the support I have received over the past year from family, friends old and new, my TEAMmates, and even strangers. I received countless postcards, letters, messages, emails, texts, gift cards, and home cooked meals delivered to my door. I received a lot more than I was able to respond or send back and I want to thank you all for your understanding. I don’t think I will ever be able to respond to every email or message, but I loved reading every single one of them and they all gave me strength. Additionally I always joke that there are definite benefits of a late stage cancer diagnosis. People you’ve lost touch with come out of the woodwork and you get a second chance to rekindle fading friendships. I cherish this opportunity. This diagnosis has also strengthened many of my existing relationships. Personally, I have learned to be less hard on myself and to try to fucking relax more and also enjoy relaxing. I think I truly understand and feel gratitude for life and relationships (and Obamacare) in a way I wouldn’t have otherwise.
My parents have been amazing. They probably have the toughest job. They are the only ones (aside from Lege) who have experienced my rollercoaster of emotional reactions as I hear both good and bad news. It hurts me to see the effect on them as I deal with all of these feelings but they continue to love me unconditionally even give me some space when I’m unable to ask for it. My mom is probably texting me right now to say “Don’t worry about US, we’re here for YOU.” They also took on the very difficult job of sending out my one year results to our family and close family friends while I was unable to even open my editing screen without crying a fucking river.
Lege, you already know how I feel about you and luckily our relationship/communication is so on point that I don’t have to tell you in a blog post. Also, you are sitting right next me me. You guys we’re getting married.
I’ll keep this short –
Ultimate: 5th season with my ultimate frisbee team Brute Squad is underway! We won our first tournament in Colorado. It was really nice to play without an ace-bandage wrapped around my chest like I had last year. This weekend we are headed to MN for the U.S. Open, an international tournament featuring the top 5 US teams and teams from Canada, Great Britain, Japan, and Colombia (in the women’s division anyway). Some of our games may be streamed on ESPN3, you can follow Brute Squad on twitter if you are interested.
Also at practice this past weekend I took a very desperate, high speed attempt to score to the face.
School: I did a 3 week intensive clinical rotation at the VA in White River Junction, VT in June and it was AMAZING. It was my favorite rotation so far in primary care and I had a great preceptor and really great clinical experience in general. I also got to live with one of my best friends and former TEAMmates, Bitterman, who is currently finishing an NP residency there. I’m still chugging along this summer semester and then I have 2 more semesters until I graduate in May 2018. Can’t wait.
Thank you to everyone for reading. As always, don’t hesitate to reach out or ask me any specific questions. I love specific questions.
Much love & fuck cancer.
***Important update 8/1/17 @ 1:30pm (EST)
Karen, my future mother-in-law created and emailed me this gem after reading this blog post. It’s too good not share and its SPOT ON.