I limped into the oncologist’s office for my regular check up. I just finished chemo, so I followed up with my doctor every three weeks. You walk differently when your whole body is recovering from chemo. I did, the remnants of toxic chemicals winding their way out of my body, lingering in my bloodstream, my skin, my sweat, my essence tainted down to my scent. But a limp was new.
When I started chemotherapy, my oncologist told me that one of his biggest concerns was that I get a blood clot—a common complication to a number of conditions, including following surgery, cancer, and chemotherapy. So when I limped in saying that my leg was feeling weird, we discussed the possibility. He checked for redness or swelling, but oftentimes clots don’t have visible symptoms or are completely asymptomatic. The preferred method of diagnosis is an ultrasound, but my oncologist sounded confident that it wasn’t a clot, advising that he didn’t feel it was necessary. With the suggestion that I had pulled a muscle, I left.
The next morning I could barely move my leg, much less walk or even bear weight on it without causing immense pain. I went straight to the emergency room where they performed an ultrasound. I explained that I saw my oncologist the day before and how he said it probably wasn’t a clot, but the ER doctor said “Never say never”. They found a DVT (deep vein thrombosis) blocking almost the entirety of my left thigh. It crept up to my pelvis, preventing blood from flowing back up from my leg, and I was put on anticoagulation therapy immediately.
I had no visible symptoms but I couldn’t walk until two weeks later. I was stranded on the couch when my oncologist called me, having heard about the clot. He asked for confirmation of my diagnosis and admitted his error. He did not apologize. I chose not to return to his office for further care.
While my current oncologist is far more conservative with his decisions and recommendations for my treatment, his caution easing me and my family’s anxieties, the case of the clot continued to chip away at my confidence in the medical community.
Treating it created new problems. When I started anticoagulation therapy, I was advised to avoid cuts or falls, anything that could make me bleed. This made me nervous, especially returning to school for an icy winter semester in Montreal; I was coming back from the leave of absence I took during Fall semester for my cancer treatment. The clot was diagnosed in October, so I was resuming only basic physical activities in November, and I vowed to be cautious as I left my health team and family support back in Los Angeles. Despite the caution, the anti-bleeding advice ignored one blaring detail: my period. I asked about it (though I had not had one since the summer) and my doctor informed me it shouldn’t be an issue.
When my period came, I was elated. After the removal of one ovary and pumping chemo through my body, I wasn’t sure if or when my period would return, and I was relieved and comforted by its presence, eager for my body to settle into a new normal. As the days of my period began to drag on, my elation deteriorated into an unremitting stress and frustration.
The bleeding was unmanageably heavy; I was going through tampons at a rate I never had before, switching to a menstrual cup that overflowed multiple times a day, and still leaking through heavy flow pads. By day 9, feeling like there was no end in sight, I became so fed up that I decided to call the nurse and stop the medication. My period lasted 17 days that month. When I turned to the internet, I discovered that I wasn’t the only one. The words “under-recognized but not uncommon” felt irritatingly accurate. Contrary to what my doctor told me to expect it became an incredible disruption in my daily life and other menstruators had faced the same problem.
Solutions were limited, ranging from various forms of birth control to total hysterectomies, and there is no published standard practice. Hormonal options may also paradoxically increase thrombotic risk, but my history of cancer led my doctor to rule that out, and my young age meant that a hysterectomy, besides being drastic, was never a consideration. My gynecologist suggested it was an anomaly, a one-off with my menstrual cycle restarting post-chemo, and she suggested I resume the blood thinners through my period. The bleeding intensified again, and eventually, frustrated with my lack of options and the slow inaction from my doctors who depreciated the toll the blood thinner was having on me, I made an executive decision. I could not and would not deal with the mental and physical toll of excessive bleeding for over half the month, every month. I decided to stop the medication for a few days each month during my period until my blood flow improved enough for my doctors to switch me to baby aspirin.
It feels unjustified to be upset when it may just be extenuating circumstances that mean there is no good treatment option. Doctors must navigate a balance between decreasing the bleeding and increasing the risk of thrombosis. But I faced a beyond frustrating lack of awareness from both my oncologist, who told me my period shouldn’t be affected, and my gynecologist, who suggested my conclusions were wrong and it was an anomaly. I found that other women lacked support for heavy menstrual bleeding and were also unprepared when it became a medical issue. With both the clot and my period I witnessed a clear cause and effect on my body, and those effects felt overlooked by everyone whose job was to be concerned about it. Because sometimes it’s not even solutions that we desire most. It’s awareness, belief, and validation.
Story by Melissa Kuch, California, USA.