I swear every day brings something new and unwelcome—and it’s not just the latest offense to decency perpetuated by the orange felon.
I’ve been on multiple titrated rounds of prednisone since the end of June and the pemphigoid blisters that covered my torso and thighs have finally stopped forming and are on average about 98% healed. Yeah, I now have big red splotches were they were, but those are better than open bisters. And I know those will eventually fade. Even though my oncologist has recommended a continual low dose of the drug for the duration until my immune system settles down, my dermatologist has been reluctant to continue because of all the side effects associated with extended use (crazy high blood sugar, lower leg swelling, random bruising to name just a few).
To be on the safe side, she ordered a slew of blood tests last week. She called me yesterday on her day off because the liver tests came back abnormally high. Like exceptionally abnormally high. Like, you-need-to-go-to-the-hospital-for-immediate-treatment-right-now high.
The reason she was so concerned is because—in addition to all my other medical issues—I have been Hep B positive since I was first diagnosed in 1985. In other words, antigens but no antibodies. For the last forty years the virus has been sitting there, minding its own business and they say, “not causing anyone no trouble.”
Well apparently since the prednisone has been used to suppress my hyper-active immune system caused by the fucking Keytruda infusions earlier this year, this has rousted the long dormant Hepatitis.
Fuck me.
At our last visit—before we knew anything about my elevated levels—she wanted me to reach out to my endocrinologist, as well as my infectious disease specialist, just to bring them into the loop so they know what’s going on and can monitor on their own if necessary.. Since that time I’ve made appointments to see both of them in a few weeks.
She asked when I was meeting with infectious disease. I told her it was the week of Thanksgiving. “See if you can get in sooner,” she said. “And I’ll reach out to him and your oncologist as well.”
About an hour later, I received a call from the ID office and asked if I could come in two weeks earlier. I said yes, so now I’m seeing him in about ten days.
Jenna (my dermatologist) called me about ten minutes later. She said she’d been able to speak with ID and he agreed the numbers were high, but not so high to warrant a visit to the ER. He told her that he and his team would work on a treatment plan to be implemented in advance of our appointment. The panic disappeared from her voice—and I was finally able to exhale.
Have I mentioned how sick I am of all this bullshit?
Not so long ago I said that if I knew back in August what I know now, I would have never gone through any of it, preferring instead to just take my chances with that tiny tumor. I’d like to amend that now, saying instead, “If I knew then what I know now, I would never have agreed to additional treatment post surgery. As traumatic as the surgery was, I’d probably be willing to endure it again if I absolutely had to. I had swallowing issues prior to having my jaw split like the carcass of a roast chicken, and there’s no guarantee that further swallowing issues wouldn’t have developed on their own even without the surgery. But the followup, the immunotherapy or chemo? Absolutely not. All my issues over the past six months have—in one way or another—been directly related to Keytruda.
Sadly I can’t turn back time, so I will continue to put one foot in front of the other and move forward, remembering that I do still enjoy life (even if I can’t savor so much as a piece of Boston Cream Pie), my retirement, the fact that I still have things that keep me engaged and learning, and that I have a wonderful man and two big, black doggos who love me unconditionally. As much as I might want to trade in this hobbled old body for a new model, I’m not ready to do that just yet. I mean, new body means new family, having to go through high school again (can you imagine). having to relearn all the skills I now take for granted, and having to search for—or possibly wait half a lifetime for again—Ben—in whatever guise he may assume.
Nah, we’ll make this one last as long as possible.
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