I apologize that it has been almost two months since my last blog post. For many this online silence translated to concern for my well-being, and I am sorry that I made people worry. I haven’t written a post recently for several reasons. First, I wanted to spend the Holidays and my winter vacation focused on being present with my family, partner, and friends. Second, I have been working on a couple essays that I hope to publish on other platforms, and therefore cannot publish on my blog. Third, good news is sometimes hard to share.
I want to expand on that last reason: “Good news is sometimes hard to share.” It seems oxymoronic yet, true. The day before I left for my winter vacation in December, I had an MRI scan. This was my first scan after finishing radiation treatments and starting immunotherapy infusions. The scan showed the radiation decreased the density of the tumor, and there was no inflammation from either the radiation or immunotherapy.
So why was I not ecstatic about the scan results: I was not surprised. I knew radiation would have some beneficial effect on my tumor. In fact, the lack of inflammation was more pleasing to hear since that meant I could continue my immunotherapy treatments as planned.
I didn’t go straight ahead and write a blog post because to hear the words, “great news,” from well-meaning followers of my writing is challenging. I have used the metaphor of sailing for my cancer journey because it is rather fitting. Some days there is good weather, while others have storms. Even though the weather may seem clear (…the radiation worked), it doesn’t mean there are not problems with the ship.
When I hear, “good news,” my mind roils with thoughts of whether the immunotherapy is even working, which we still do not know. My thoughts stir with what may happen if the immunotherapy does not work. I question, how many treatment options do I have left?
Every day I am reminded that my body is not what it used to be. My short-term memory has suffered; words frustratingly sit on the tip of my tongue; and my right side is weaker. All these symptoms are expected side-effects of the surgery and radiation, but no less agonizing. Hopefully this will all improve, but like my lower ankle paralysis from when I was twelve years old, they are a constant reminder that my tumor is ever-present.
Let me zoom out for a second because I do not want this post to spiral into easily reachable, yet unhelpful, depths of pessimism. I know from living with cancer for more than half my life that even when the ship feels like it may be failing, if there is a sunny day outside, I better do my best to bask in it. It is easier said than done, but appreciating the “good” in the face of tremendous obstacles is vital.
That is why I went off the grid for winter break. I focused on being with my family, seeing friends in Boston, having my partner meet my family as well as vacation in New Hampshire, and then traveling down to D.C. with my partner. What happens with my medical situation may fluctuate, but I can choose to stay true to my values for holding those I love close.
This fluctuation though is challenging. It never gets easier, and to post updates every time there is a major development would be mentally exhausting for me and you.
Take this past week as an example. For the past month or so, I have been developing some small red dots on my face, chest, and arm. Some of them were itchy, but mostly benign.
One of the warning signs for my immunotherapy are rashes because it can develop into severe allergic reactions or be a sign of internal inflammation. I had been keeping my doctors updated on my situation, and we were trying to treat the spots with Claritin and a simple topical cream, but the spots did not go away.
Concerned, my doctor thought it could be an allergic reaction to my treatment. She wanted to consider steroid medications and delaying my next immunotherapy infusion. After receiving this news on the phone, I panicked. All I could think about was how the steroids could possibly interfere with the efficacy of my treatment, and the scenario where I may have to stop treatment indefinitely due to toxic side effects.
I had started the semester with a breath of fresh air. Without time-consuming and physically draining treatments, I was excited for all the possibilities ahead. However, in a split second, I was drowning in a sea of uncertainty. All my excitement for what was to come disappeared as the storm of medical crises blocked out the light.
Fortunately, within twenty-four hours, I was able to have an urgent appointment with a dermatologist. She took biopsy samples to figure out the origin of the spots. Fortunately, even though we do not yet know the source, the dermatologist felt that the rashes were minor. For now, even if the spots are a reaction to the immunotherapy, I can continue my treatments.
I left the dermatology office and returned to my car. I sat down in the driver’s seat and could feel my heart pounding against the hole they stitched in my chest after the biopsy. I wanted to cry. I wanted to release all the stress, anxiety, and fear that had built up within a single day.
Despite years of coping with my reality, I could not manage to swim out of the sea of unknowns.
It is hard to share good news because everything can change, for good and bad, in an instant. As a friend of mine put it, good news is often generalized into thinking everything is okay, whereas bad news is at times avoided.
I know this may not be the most cheerful post. There may be readers who think that any good news should be celebrated, but I have always promised to be authentic in my writing. For better or worse, these are my emotions.
I recognize I should write more frequently, and I will try to do that regardless of the topic. There is so much good in my life, and I promise I am embracing all those moments. Sometimes though for the sake of the emotional whirlwind that is cancer, it is easier for me to remain neutral to some of the medical news I receive rather than classify it in binary terms: “good” or “bad.”
I’ll continue to remain grateful for the sunny days, and work through the storms, but I cannot always control how I will react both physically and mentally. All I know is that I need to hold onto my agency of when I wish to share whatever is going on in my life.
To be continued…
P.S. I don’t want this post to make people afraid to respond to any news I share. Perhaps a better response to medical news for anyone is, “How are you feeling about it?” That way, the person who shares the news can classify it on their own terms. (…maybe I’ll write more thoughts about this in a future post). 😉
P.P.S. Thanks to my friend, Ali, for talking through some of these thoughts with me