You begin with several disorienting negotiations in your head and heart. Is this real? I’ll stay positive, I’lll think of all the good that can come from this, I’ll educate myself, but, mostly, I’ll remain positive and I’ll get through this, I’m a fighter…

Then come the nightmares, I mean, actual nightmares – the dreams you have at night, about a disease you’ve never heard of, know nothing about and you wake in a cold sweat. You cope with the pain, (the actual physical pain), that has become your one constant, the familiar sensation in your body that you’ve become accustomed to, but now realize, how fucking serious this pain really is.

Then come the physical nightmares. The hospital becomes your second home. Pain relief, tests, discussions – is she just drug seeking? This can’t be possible, I just dosed her with this many milligrams of pain medication, and it didn’t take the edge off the pain. But, look at her body position, look at her sweat and her heart is racing – maybe she’s actually in pain – maybe? They won’t take your word for it. Trust me, they won’t. You begin to hope they’ll place the IV in a vein that wasn’t stabbed a couple of days ago and still has a bruise and the remains of adhesive from your last blood draw or IV for fluids.

You stare at the walls, because you can’t focus on anything. You’re waiting for them to decide how they want to treat you. You don’t want to hear the homeless man vomiting in the room next to you, or the little kid screaming about having a shot. You don’t want to hear the clicks, dings and beeps that are the sounds of an ER. You know there’s the solution of putting on headphones and listening to music, but, shit, I forgot my headphones.

You figure it out. You get a special “hospital bag”, it has your charger, your headphones, your list of medications, your new, “treatment” binder, that your friend helped you pick up at the drug store. Now, I plan for everything. I have bought little bag to hold various things – this one has medicine, this one has my headphones and my iPod, this one has my toothbrush and so on.

You become grateful for apps like Uber, Order ahead and Instacart. And even more grateful that you have an ex-husband who is willing to help you to pay for many of these expenses, because, this shit gets expensive.

Then come the relationship nightmares. Who knows how to deal with this, and how do I explain myself? Initially you think you’ve got this awesome support system, that no way will anyone leave you to feel alone. But heres, the reality, nobody gets it. The friends on the support network on Facebook understand, but the friends you’ve had for decades don’t. It’s the most confusing thing – ever. There’s an initial onslaught of support, which dies quickly as your reality becomes more – real. Your tiny bouts of energy gives off the idea that you’re okay. People notice I’ve lost weight, but, otherwise look normal – so, it can’t be that bad, can it? Some people try to give helpful hints – take up a hobby, or read a good book… Yeah, thanks… I hadn’t thought of that…? You can’t say, no, I can’t fucking take up knitting right now, I don’t know when I can sit up in my bed. So you just say, thanks – good idea.

You begin to placate your friends, because they need support in supporting you. And of course, there are the people who completely disappear. You never needed them more, because really, you just want to hear about the new movie, or talk about random things to get your mind off your disease, but they promptly leave, either quietly or with a harsh jab that you didn’t see coming a mile away, but the hurt leaves you spinning with a little extra confusion.

What a trip. I have no idea what’s in store for me. I’m accustomed to tasting the sensation of saline as they begin an IV, I’m discovering the fastest way to get care. I’m finding my moments of energy and using them to make a batch of food, take a shower, all things I never thought twice about.

Showering, cooking, shopping, parenting, driving, volunteering, working, exercising, socializing all things that would happen in the course of a day, have been replaced with my heating pad, fuzzy socks, tv, and a hope that I’ll have enough energy to take a shower.