It's been a rough few months, kids. I haven't received an ounce of good news in terms of my health. The last few weeks have started up my new cancer treatment plan and even though I'm just getting started, I feel like I'm already exhausted.
So here's the lowdown.
No surgery. The surgeon feels like it is too risky to open me up and he wants to let the new chemotherapy drugs take a stab at shrinking these tumors. Granted if I run into other issues like blockages, bleeding, or vomiting, then plans would change.
I can't say I'm pleased with this. My pain has been increasing by the day and it is taking its toll not just physically, but mentally. I have been given an array of pain medications but for the most part I refuse to take them. I know I shouldn't be in pain but no offense, I'm not an elderly woman who can sit around and watch Judge Judy all day (no offense to elderly women or Judge Judy fans. I love you all). The problem is that I have to raise humans. And one of those humans is a bit dependent on me. Ya know for like food, nurturing, and survival. I just can't be whacked out on pain meds while trying to care for a baby. If something happened to her on my watch, I just couldn't bare it. I am starting to give in. I take meds at night because my pain seems get worse as soon as I try to sleep. But last night was a perfect example. Sam woke up numerous times and I had to fight the drowsiness off as best I could. That being said I would like to take a minute to thank the "nap givers". I could not survive this without naps. Thank you to everyone who comes over and lets me sleep and thanks to my own family who has to put life on pause so I can get some shuteye.
My pain sucks right now. I've taken meds and it's done jack squat. And I just keep hearing the same thing over and over in my head: "You're doing it wrong. You didn't listen to what the doctor said. You're taking in all of the static. You're doing it wrong.
Let me explain the static:
Last week I had an endoscopy to check in on my stomach. This is the third endoscopy in the past year, all performed by a wonderful GI doc at UPenn. I was hoping to have a clean slate like last time but no such luck. My tumor grew back. He said it's not as bad as the last time but it's there and it's a pretty decent size. My reaction was, "this sucks".
And I guess he saw it in my eyes. There weren't tears but there was defeat and my return back to where I was a year ago. Me getting ready to say goodbye. Me starting to try and make arrangements and figure things out even thought there is nothing to arrange and nothing to figure out. And he stopped me.
He told me I didn't need to go there.
He talked about how when he became a doctor it was in the frenzy of the AIDS epidemic. He and fellow doctors would put on space suits to take care of these patients because they had no idea what they were dealing with. The only thing they did know was that all of these patients would die. But now fast forward and there is no epidemic. HIV has become a manageable chronic illness. And that's exactly where I want to be. I'm not looking for a cure. I'm just looking for time.
If that story wasn't enough, he broke the 4th wall of doctoring and told us about his own struggle. His wife had been diagnosed with myeloma and given a year and half to live. That was 5 and a half years ago. She gets chemo every week but she is still here.
And then came the static.
He asked Billy and I if he'd ever given us the static lecture. "It's like going to the opera", he said. "You are ready to listen to the performance but the speakers are catching feedback and making a low shrieking noise. And there in lies the choice. You can either focus on the static or sit and enjoy a beautiful piece of music."
Yup, I broke. Tears fell. Not just from my eyes but from Billy's as well. As shitty as the news was, I felt like I was leaving there with something a needed: a gentle reminder that as sucky as life is right now, I still have a choice.
So back to tonight. I'm sleepless and riddled with static. Mostly it's nerves about what's about to transpire. Ladies and gents, I have grasped on to it long enough but I can no longer maintain my hold. The hair is on its way out. I started my new chemo therapy this past Monday. With each new treatment doctors provide you with a laundry list of side effects in case you're not already super pumped as it is. Hypothyroidism, bleeding, high blood pressure, nausea, neuropathy...oh yeah,and hair loss. And which one on the list do you think I decide to focus on? Of course it's the hair. Listen, you haven't seen my head. I am a phrenologist's holy grail. I don't know what happened to me, but my skull is banged up. I have numerous dents and lumps. They are so bad that I have my own parlor trick of resting a small bowl in one of the crevices. So screw the thyroid or whatever else could seriously go wrong. My friggin hair is about to fall out. Priorities!
So yes, I'm wide eyed and I'm fixated on hair loss and pain and I'm letting the static take over. And that's okay. I'm allowed to fail. It's too exhausting to be on the right path all the time.
But I will try and focus on the music. Tomorrow will be bagels with my nieces, dying Easter eggs with the kids, and if I feel like it, I just might shave my head. Out of sight. Out of mind.
The orchestra is warming up.