Where Have You Been?

The Lowlights, To Sum Up, Verson:

I spent December in the hospital, in Isolation.

I got another infection, only this one cultured as a semi-resistant strain. My treatment was, in every way, horrific. I spent most of my time screaming, because it felt like my insides were being ripped out. I discovered pain is not something they consider worth treating in the hospital. It's routine, so they have no interest in it. They also didn't care that the combo of adhesive and IV antibiotics were giving me third degree burns all over my right (dominant) arm, or that the ABs were causing me to projectile vomit at even the smell of food. Yes, I started throwing up every time food delivery STARTED--well before they got my room. They weren't interested in giving me gravol; nausea was an expected side effect. Oh yeah, you bet I lost some weight. Still, as a diet, I don't recommend it. More importantly, I lost being treated like a human. Lots of staff wouldn't enter my room. Others screamed arguments in the hall about if they could be forced to enter my room. You would think, working in a FUCKING HOSPITAL, they would be informed about germs, but no. They tried to make my spouse leave, and got flat refusal. But they made even my spouse glove and gown. It was also my spouse who picked me up and got me to and from the bathroom, oh so many times. I'm so allergic to IVs, they do the opposite of hydrate me, and my body tries desperately to flush the poison out. I was so dehydrated, my mouth was constantly bleeding, from my lips splitting open, and I couldn't swallow food or what meds my spouse was able to give me, because I was beyond having no spit. Everything just stuck to the inside of mouth.

My only other real company, through my beloved laptop, was Matt Nathanson. Modern Love. Whoa. Such a gorgeous album. But I am a hopeless sucker for twisted fairy tales...

And though, my treatment did kill off the bug and I got a negative culture to prove it. I also have the infection on my perm record. For the rest of my life, yes really, all medical personnel will glove and gown for ANY interaction with me. They will also gather in a worried cluster and discuss among them at length beforehand, about who is going to be forced to do this. Because medical staff weren't already hostile enough to me. I've already got to experience this humiliation multiple times. Most recently when my doctor ordered a routine blood test. I also discovered my blood now travels alone, in its own BIOHAZARD bag. Even it is in permanent isolation.

I spent February accepting my heart was still bleeding, torn and scattered everywhere. My torso, black and empty. This time, not literally. Feb 14th marked the anniversary of my daughter's diagnosis of terminal lymphoma. It came after her brother's of 10 October 2010. They both fought so hard. Their bodies just gave out on them; they never gave up. We lost Phoenix June 9th, 2011. Every extra day with them was so worth it, but I was hoping he would make it a year. But on June 9, the Cancer attacked his brain. He began having seizures every few minutes, and even as tight as I could hold him in my arms, I lost my son. And I became something that should never exist: the reverse of an orphan.

It was also then that I found out that in all the years the hospital had been open, no one with his diagnosis had lived to even see a month. It made nothing easier. But it made me even more proud of my boy.

My Girl fought just as hard, but the Cancer's opening blow had been taking her intestine, and her body just couldn't come back from that. No one told me until after, but she never responded to meds. But aside from the week in hospital, after the surgery where they tried to take all the Cancer out, she spent nearly every moment of those two months in my lap. She looked up at me the whole time. I would have forgiven her for looking up at me with anger or even with hate, because I wouldn't fix it. But no, my girl looked up at me with total love, the same way I had looked down at her, in what seemed like only moments before. When, after fiercely defending her birth-brother from me, and earning her name, she curled inside the top of my coveralls and went to sleep against my heart. We lost her first, on Easter, when the Cancer took her lungs. She was going into respiratory arrest every few seconds, but she wouldn't give up. She kept fighting her way back, and choking on the tube. As blessed as I was for being chosen as their family, I was blessed in another way, as I was for her brother two months later. I held my girl until she was gone. I had been so afraid that when I was at the doctor's or hospital myself, the Cancer would win, and I couldn't bear the thought of either of my children dying alone and afraid. I can't know how aware they were. I don't know how aware I'd want them to be, if it meant they felt the pain. But one of the few comforts I have is knowing that I did everything I could to be who they deserved. I don't think I made it. But I tried.

And, a year later, I can say completely, the stuff about time making things better? It's beyond utter bullshit. What will happen is you'll have a lot of people who laugh at your pain. You'll have nearly as many ask when you're going to have more children. I don't know how to respond to either of those...I hesitate to give them the respect of calling them people. My children were people. These twits are just assholes. I actually got the 'when you're going to have more children' thing ON THE SAME DAY as I lost my daughter. WTAF?

The answer to that is: I'm not. My disease, which is were the rest of my time has gone, stress and time being some of the many things that make it worse, made it impossible for me to have children of my own body. But the guys were never less family because they didn't have my dna. They were more. They needed a home. We both did. We gave that to each other. I've cried a lot of tears over my disease, but I'm grateful for it in this. I cannot survive the pain of losing another child. Most, of those who know me, would argue I didn't survive this.