Navigating Journey: Nothing is Set in Stone        

I had been feeling better, “on the mend,” from approximately mid-October to early December. As much as my therapist and I had discussed the importance of not setting expectations, naturally somewhere on the back of my mind I had the expectation of “continuous recovery.” In addition, I was really looking forward to spending quality time with my son, who planned to come home for two weeks over the winter break. As last year has shown, nothing goes as planned.

I knew from the very first conversation about my diagnosis that after the active treatment is done, there is a preventative follow up of 5 to 10 years with an estrogen inhibitor. I didn’t think much about it, perhaps because there were millions of other things to think about in the last 12 months. I started the drug on December 1, and by December 14^th developed a terrible, 24/7 thirst. Kind of a feeling that no matter how much I drank, it was unquenchable. At first, it was unclear that the drug was the reason. I had a mild virus, my husband tested positive for covid (I tested negative). I took the drug for 16 days, then stopped, but the thirst persisted for another month. During that month I had multiple tests done and none explained the situation. When I had an initial conversation about it with the oncology nurse, she said such a reaction is highly unlikely. It’s not on the list of common or even rare side effects, and once I stopped the drug, it should be out of my system fairly quickly (its half-life is 2 days). I suggested that the drug immediately worsened my night sweats that already had been quite significant, as chemo threw me far to the other side of the menopause threshold. I don’t sweat much normally, so this change alone could cause a significant loss of salt. My acupuncturist and massage therapist independently suggested adding electrolyte powder, especially the one high on sodium since I’m generally low on it. It helped, but once I attempted to restart the medication, even trying a lower dose, the thirst returned.

All of this was happening against the backdrop of anticipation to return to work. Our semester started on January 8. I was really worried to have to come back to teaching while my thirst was still unresolved. The aftermath of chemo and radiation, the rapid onset of menopause it caused, and the estrogen inhibitor also put me at increased risk of UTIs and other troubles in that area which began to show up.

The return to the classroom proved wonderful. I’m teaching two courses this semester, and this is pretty much the only space within which I don’t feel “before” and “after.” It’s just me, engaging with the process. I’m endlessly grateful for caring colleagues and students, appreciating greatly all the thoughtful messages, cards and gifts. Going through the first class, the first faculty meeting after the hiatus of 8 months was emotional. I’m fully aware just how raw and vulnerable I am. I’m also really exhausted—exhausted being in discomfort, exhausted with anxiety, exhausted from this long steep hike. The estrogen inhibitor is the issue still to be resolved. There are several drugs on the market to try (four, to be exact) and I’m hearing of cases when women were not able to tolerate any of them. These are big decisions that I’m unable to make at this moment. Everything is still too unsettled; everything is still a trigger. There are many moments in my day when I feel paralyzed. Paralyzed by uncertainty, paralyzed by discomfort, paralyzed by the lack of energy to do things. There is a lot of fear but also a lot of grief. Grief that nothing will ever be as it was 13 months ago. Grief that the veil is off (in the words of my therapist), that there is no illusion of control or planning ahead. Or as my son puts it, “planning is tentative.”

Navigating this new, post-treatment chapter, still feels like navigating stormy waters. Too many chain reactions, physically and emotionally. As I said and wrote many times during last year, there is no going back to “normal” and there is no “leaving it behind.” It’s about moving forward, slowly integrating things from before to the new now, celebrating tiny victories, accepting this ordeal as a part of my life story, losing and then hopefully finding alignment, disconnecting and reconnecting again with my essence. Nothing is set in stone.

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I was about to publish this piece three weeks ago but then things got worse. I’ve been in excruciating pain that is hardly alleviated by opioid painkillers. Trying different medications, added estrogen cream. Two ER visits, so far one clean ultrasound. It’s most likely extreme muscle tension and nerve pain in the pelvic floor exacerbated by a chain reaction described above. I barely sleep, can’t drive; I am struggling to teach even on Zoom, as sitting makes it worse. Three weeks of never-ending doctors’ visits, tests, and suffering. Currently awaiting an MRI, working with a special pelvic floor physical therapist in the meantime. IT’S BEEN 13 MONTHS OF HELL. LAST THREE WEEKS MADE IT ENDLESSLY WORSE. THE FEELING IS OF HORROR AND GRIEF. JOY FEELS INACCESSIBLE. I’M EXHAUSTED. I FEEL TRAPPED AND TORTURED. I FEEL DISABLE AND POWERLESS. I am grateful for all the spiritual lessons and insights I received. BUT for a human being in a female body THIS IS UNBEARABLE AND UNLIVABLE. I DON’T KNOW WHY BUT I NEED THE WORLD TO HEAR THIS. IT’S NOT THE VAGINA MONOLOGUE, IT’S THE VAGINA SCREAM!