There’s been a good reason for it, to be honest. I wanted to write a post about the situation I found myself in last Friday afternoon but at the same time, I was in a stone cold panic just thinking about the notion of sharing something so incredibly horrifying to me.
The phone call came as I was making the delightful discovery that my local boutique grocery store, Feast on Brilliant, carries my favorite ice cream brand called Jeni’s Splendid Ice Cream previously only available to me via mail order (click that link right now…do it…trust me, you will thank me later.) I was sitting in my car texting this fantastic news to my niece when my phone started ringing. When I saw that it was The Great Scott himself calling me at 5PM on a Friday, I immediately got a pit in my stomach.
“Well, Maribeth, you’ve done it again. I’m a little stumped. But based on your blood work, you appear to have tested positive for Hepatitis B.”
There was more to the conversation than that but this was the end of the place in the conversation where I felt like the same person I was before.
I had another disease? A highly contagious, communicable disease? I had a freaking STD? We won’t even get into the irony of that statement but there you have it. I was to see a liver specialist to determine more information about my new condition. TGS had scheduled it for me for 8:00AM on Monday morning (holy crap, that was fast), and we would work with her to determine if I had any chance at all of getting approved to get the new goo, what with my damaged, infected liver situation.
TGS had already spoken with the people at Genentech who manufacture and market Ocrevus. They weren’t keen on my prospects of getting approved to take the new drug. It would be very dangerous for me. I had a high likelihood of developing liver complications, maybe even liver cancer, and they didn’t like that idea at all. TGS tried to calm me by telling me he wasn’t giving up but we had to work together with my new liver doctor to make our case during the roll out of a very new medicine where there is much information unknown. “I’m optimistic,” he said. “I’m not giving up. I don’t think you should either.”
I don’t know if I can explain what went through my head in those minutes of discussion.
I was reeling, frantic, horrified, ashamed, with outraged madness raging like wildfire burning through my brain. How could this happen to me? What kind of joke is the universe playing here? Who or what cosmic entity has it out for me that mightily that things like this can keep happening to me? When is enough enough already for the love of god?
Panic would be a mild word. Desperation would come closer. I had my hopes up so very high. I know the buzz in MS circles is full of hyperbole when it comes to Ocrevus, I get it. It’s complicated and might not be all that and might be more dangerous than anyone knows, blah, blah and blah. I get it. I really do.
But my options aren’t good otherwise. Tysabri is one of the most aggressive DMT options out there and it just didn’t take for me. Dr. Scott was extremely optimistic about getting me on something new and that was a good thing because my time on Tysabri was running out. My JC Positive status always meant that I was on short time with Tysabri. I’d gone 15 months but we originally agreed that I had about a year where the risk would be acceptable and after that, it was probably not a great idea for me to stay on the drug. Fifteen months means I’m three months into the danger zone. I’m not excited about that.
And since I’m being really honest here, I was blown away by the notion that I now had a disease that I probably got from having unsafe sex in my years of wild, reckless abandon, during my insane 30’s when I took to living life like I had a little tiny death wish. Or a great big death wish.
It seemed more than a little ironic to me that the things I did to prove my lack of worth to myself, my undeserving shameful existence, might actually ruin my life. Prevent me from being treated properly for my MS. Mark me with a giant letter B that didn’t stand for Beth but actually stood for dirty whore who will infect you if you get too close.
I know, by the way, that this is insane. I know there are many more ways to contract Hepatitis B than having unsafe sex, but it seemed like the most likely option for me from all of the information I read on the many web sites, chat rooms and Reddit threads dedicated to the topic. I spent the weekend feeling like I was living in an alternate dimension where everything looked like my regular life but nothing made sense.
I told a few people. I don’t even know why I did but it felt like the kind of dirty secret you had to disclose to at least three people to make it feel even a little bit real. So I did disclose to a few. My therapist. My best friends. My closest family members. I didn’t want anyone to know really but at the very same time I wanted everyone to know! Maybe if everyone knew it would make it feel more real?
Don’t drink from my water bottle, people, and for the love of god, don’t kiss me because, Jesus, this disease is no joke. It’s highly contagious. It does horrible things to your body, mostly your liver. Based on my non-stop scouring of the interwebs over the weekend, there wasn’t a whole lot good to say about my current circumstances. I, all of the sudden, found myself full of empathy for people out there who are infected with this dastardly illness. I wanted to meet them all and tell them they were good people who probably didn’t deserve what they had to deal with. I realized that was probably impractical but, still.
I counted down the minutes to my 8:00AM appointment with my new liver specialist. All weekend, it felt like that time would never come. I had pages full of questions I wanted to ask her, not the least of which was, who do I have to tell? Who is in danger from me? Do I have to call everyone I’ve ever had sex with? I mean, Jesus, please tell me no! What about make out buddies? Did I have to spend the rest of my life wrapped in plastic head to toe like the Old Lady in the Plastic Bubble to protect everyone around me from my infectious horribleness?
Dr. Goswami, my new liver doctor, was seeing me on the actual due date for her second child. She was all of about 4 feet tall and great with child. She asked me a million questions to which I answered 100% honest “NO’s” and even she looked confused.
“We’re going to do more tests,” she said. “This test you had tells me nothing but that you’ve been exposed to the HBV virus. There are many things we can do. You may need to be on medication for the rest of your life but we can figure this out.” She handed me four pages of blood work orders, an order for a liver ultrasound, and a pat on the head and a promise that someone (not her) would probably be in touch because Lord, help her, she hoped this baby was about to be born already. She was quite adorable. I felt like I was in a shit situation but in good hands. My favorite part of the appointment?
Dr. Goswami: “Are you currently sexually active with multiple partners?”
Me: “Um, no. I’m not. I am quite frankly sexually INactive with zero partners because Jesus, who can think about all of this and that at the same time?”
Dr. Goswami: “When was the last time you had unprotected sex?”
Me: “Um…I’m not sure? Maybe…um. God this is kind of embarrassing, but I can’t really remember. Maybe 5 years ago?”
Jason the Nurse (who has been in the room with us the entire time): LOUDLY CLEARS THROAT AND COUGHS WHILE ALSO SAYING “BULLSHIT” AND TURNING BRIGHT RED.
Ok. He didn’t actually say bullshit but he did choke. He did turn a lovely shade of crimson and I wondered if he was really cut out for this whole dealing with delicate conversations thing. I have to think mine wasn’t the most embarrassing conversation he’d been privy to in Dr. Goswami’s exam room. Or maybe not?
I left there and headed straight down to the lab to have no less than 10 vials of blood drawn from my veins. They could have taken more, I would have been OK with that. I kind of liked the idea of them taking all of my blood and maybe replacing it with better, improved cleaner blood, but that was not entirely realistic thinking. I went back to work with my head still in a whirl wondering what kind of Hepatitis information I would learn from all of those vials of blood and how would I ever learn to live with this? How could I tell people?
Late-ish on Tuesday night the blood results all of the sudden got posted to my health portal. I sat in front of my computer feeling sick trying to figure out if I had the nerve to click or if I’d rather just wait for the inevitable phone calls and the list of more dangerous drugs and all of the hullabaloo that would result from the confirmation of my latest diagnosis. I’m making light of this here, to tell a story, I suppose but I haven’t been in such a dark place in a very long time. I’ve visited some dark places but this one felt really bad. Maybe because of my age? Maybe because there is so very much uncertainty in my life that even just a little more felt like too much for me to handle.
I went to work those past couple of days and acted like a normal person does, but I didn’t feel like a normal person anymore. Not even a normal person with a chronic illness like MS. I felt decidedly bad. I felt damaged.
But on Tuesday night, I did click on those results. I had to! I held my breath as the little cursor arrow landed on top of the first of 6 lines six different hepatitis tests..
I stared at the screen blankly. Non-reactive? Does that mean negative? I think that means negative but I’m afraid to believe that so I better Google. Yes. I think it really does mean negative, but maybe there is more to this. I had a liver ultrasound scheduled for the next morning. Maybe the ultrasound would show my diseased, pathetic liver and prove these tests wrong.I went to bed feeling muddled. I wanted to be happy but I was afraid to be happy.
The next morning, I had the ultrasound. I drove to work. Just like a normal person. Just like before. I emailed both doctor’s offices and left messages on both voice mails. Nobody called me back.
Then today, I got word from The Great Scott himself, again, but this time on my voice mail…
“Maribeth, it seems we were wrong. My first impression is your first test was a false positive. I have to investigate more, however, because this is deeply concerning. I need to find out more about how this happened. I will be in touch, but the good news is this is good, very good news. The bad news is we probably caused you a very fretful couple of days and that is just not good. I am investigating with the labs and will get back to you as soon as I know more.”
In an email I received later this afternoon, it was explained further that the particular test the drug company requires for Ocrevus is so sensitive, it has a rate of more than 50% false positives. TGS and his team were unaware of this before this experience with me, but in his investigation and discussions with the liver specialist he was enlightened. He ordered this particular test originally because it is the test that is required to be in the Ocrevus Study. TGS wanted to apologize for “making me go through this. With a brand new drug we are all learning about this drug and the requirements together.”
“That being said, two good things came out of this–1. Your liver is fine, the second set of testing verifies this. 2. We can move forward with getting you switched to Ocrevus. I know for a fact, Nurse A is working on our Prior Authorization as I walked back to the Infusion center and informed her you were approved to move forward with the medication.”
So…there is a lesson to be learned here. Lots of lessons really.
- Don’t panic until you get more information.
- Don’t assume you’re a bad person who deserves the bad things that keep happening to you. You’re probably not. Nobody is.
- People have a lot to deal with. From what I learned about Hepatitis B in my mad lost weekend of research, I can tell you that the people who have it suffer badly not just from the impact of the disease itself but from the incredible burden of being judged harshly by so many people all around them.
I will be more empathetic to all people who suffer. I will be more empathetic in general. People all around you are dealing with heavy shit. They may look just fine, they may look a little tired but they may mostly look just fine and you have literally NO idea what they are going through. None. Zero. Nada.
Don’t be judge-y. Don’t be cruel. Try to understand. Oh. I also learned to never forget that there can always be a false positive! I never believed in such things. I thought I deserved all the new bad things that were happening to me on top of the bad things that were already happening to me and you know what? I didn’t. You probably don’t either. Nor does that lady sitting across from you on the bus.
Be kind. Try to understand. People are dealing with a LOT and even if you can see it, it’s worse than what you see, I promise you.
Be kind. The end.