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The one-year anniversary of my total glossectomy

๐ŸŒˆ Abstract

The article is a personal account of the author's experience with a recurrence of squamous cell carcinoma and the events leading up to and following their emergency surgery to remove their tongue. It describes the author's diagnosis, the challenges in getting treatment, their decision to get married quickly before the surgery, and the complications that arose during and after the surgery.

๐Ÿ™‹ Q&A

[01] The Diagnosis and Treatment Plan

1. What was the author's initial diagnosis and treatment plan?

  • The author had a recurrence of squamous cell carcinoma and was initially scheduled for a hemi-glossectomy (removal of half the tongue) on June 8 or 9.
  • The author underwent various tests and biopsies in May to confirm the diagnosis, which ultimately showed the cancer had spread further than expected.

2. How did the treatment plan change as the author's condition worsened?

  • Due to the rapid worsening of the author's condition in May, the surgery was moved up to May 25, just a day after the author's impromptu wedding.
  • The surgery ended up being a total glossectomy (removal of the entire tongue) instead of the planned hemi-glossectomy, as the tumor had spread too far.

3. What was the rationale behind the decision to pursue surgery versus chemotherapy first?

  • The surgeons at Mayo Clinic believed they could achieve clean margins with surgery, while chemotherapy would delay the surgery and potentially close the window for a potential cure.
  • However, the author's rapidly deteriorating condition made the decision to proceed with immediate surgery rather than trying chemotherapy first.

[02] The Impromptu Wedding

1. Why did the author and their partner decide to get married quickly before the surgery?

  • The author and their partner, Bess, got legally married the evening before the surgery, as they wanted to be married before the planned surgery date of June 8 or 9.
  • When the surgery was moved up to May 25, they were able to quickly organize a "crash ceremony" officiated by a friend, as they had already obtained their marriage license a few days earlier.

2. How did the impromptu nature of the wedding impact the ceremony?

  • The wedding ceremony was hastily organized, with the officiant using ChatGPT to help write the ceremony.
  • The author describes it as a "short, but charming, crash ceremony" that was not what they had originally planned, as cancer "has a way of crashing the party."

[03] The Surgery and Aftermath

1. What were the complications that arose during the surgery?

  • The planned hemi-glossectomy turned into a total glossectomy, as the tumor had spread too far and taken out both major blood vessels in the tongue.
  • This resulted in the entire tongue having to be removed, which was a much more extensive surgery than the initial plan.

2. How did the author's recovery and ongoing treatment progress after the surgery?

  • The author describes the "horror" of the period following the surgery, with additional tumors growing rapidly in the following months.
  • The author has undergone various treatments, including chemo and clinical trials, but is still struggling with side effects and the exhaustion from the surgery.
  • The author expresses uncertainty about their long-term prognosis, with a low likelihood of living to see another anniversary of the events.
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