I’ve been asked what’s going on many times in the last couple of days. I told everyone a couple of days ago that the trial has been successful so far, but that I landed in the hospital again with a a terribly sore throat, some kind of reaction to the treatment maybe.
Except it’s not just that. Yesterday morning when I woke up and had my vitals taken, the number (sats) that tells you how oxygenated your blood is read a little low. Low enough that I was asked if I was having trouble breathing, shortness of breath, coughing, (no to all of them — I had just woken up and was a bit groggy, but otherwise felt fine) and then put on oxygen to see if my sats would increase. They did and I just shrugged, I’ve had unexplained incidents of low sats during other hospital stays and the chest x-ray taken in the ER on Monday had been clear. I wasn’t coughing, I had no fever, other than an intensely sore throat and coughing out a bit of mucus from my tonsils, I felt good. But I was scheduled for a chest CT later in the morning to check out my lungs just in case.
Anna, who is very dear to me, was having chemo yesterday, so she and her husband, Ian, brought me a latte and hung out with me for a bit before Anna’s appointment. The event I had been planning for almost eight months was happening last night, and I had a pass from my oncologist to attend it. My sister brought over my dress and shoes and make-up (plus a couple practical things since I knew the throat thing was keeping me in hospital until the end of the weekend at least). I’d forgotten to ask for shampoo, so I walked with Anna and Ian over to Mount Sinai. There’s a proper pharmacy there where I could pick up little odds and ends I’d forgotten to ask for. I looked hilarious — I was wearing an oversized men’s shirt, bright pink pajama bottoms tucked into motorcycle-style boots, and Ian’s jacket thrown over it all so I wouldn’t get cold when we went outside.
I was in a good mood. Seeing Anna always puts me in a good mood, or maybe not a good mood because some moods just can’t be good, they can’t be fixed or made better, but when Anna is around, the most devastating things can happen (and they often do, Anna is my bad-luck charm) but things feel more tolerable because she is around and is one of the few people who I can say gets it, what I’m going through, and I don’t know many people I can say that of and I don’t want to because this is a shitty thing to have to get (and I don’t mean, like, the obvious shittiness of having cancer in your thirties) and I don’t know how many Annas I can handle in my life.
But I saw Anna and that made me feel happy and I was going to an event I really cared about and had been working on for a long time and was so excited about that I didn’t even care that I would have to be in the hospital for a stupid amount of time yet again, because I’d see months of planning and thought and collaboration coming together and nothing could make me feel bad on a day like that, not even the prospect of several more nights spent sleeping in a hospital bed.
You see where this is going already, I’m sure, and it’s not good. Flash forward to the evening. I have my makeup done, my dress is on, I am waiting for my nurse to bring my liquid dilaudid parceled out into four little breakout doses. My trials nurse and one of the trials oncologists come downstairs together, sit down, and tell me I can’t go. I have pneumonia apparently.
What happened next wasn’t pretty and involved some toddler-level tantrums–trying to prove I could breathe alright as I was heaving with sobs, unable to catch my breath, trying every bargaining tactic on the phone, the oncologist having to call Dr. Siu in Florida where she repeated over and over that I could not go out, she would not agree to it, and I wheedled and begged and cried, and finally sobbed, fine, I won’t go then and I’m doing what you want, I’m not going out but this was IMPORTANT to me and I get to be sad, and Dr. Siu saying, I am not making this decision lightly, I am concerned about your health, and me saying, I KNOW, I KNOW, I already said I wouldn’t go, I get it, and I’m cringing just to think about it now but I was upset enough that it warranted a full-on teenage girl argument.
So that brings us up to last night. I was told that I had pneumonia, and it was possible that it was fungal which is Really Bad, and someone from infectious diseases would come up to see me and I handed over a sample of disgusting mucus that was hanging out in my throat, and lay on my bed in my dress and cried and sent text messages telling everyone I wasn’t allowed to go out after all.
Someone from infectious diseases came today, a tall woman wearing a skirt, a mask, and some goggles who remarked before anything, Oh, you’re reading Steven Millhauser, I love him followed by, you don’t look sick at all! I didn’t expect this from your file, and I said, I know, I feel fine. Other than my throat, I don’t feel ill at all.
We spent the next 20 minutes talking about what she thinks we may be dealing with. First of all, she doesn’t think it is fungal at all–I don’t have the risk factors for fungal pneumonia, I haven’t been immune compromised since July, I don’t work on a farm, I haven’t traveled anywhere tropical in the last six months, etc., etc. So what could it be?
I caught pneumonia like a normal person
There is a mild infection in my portacath that has basically been sending small amounts of bacteria hurtling towards my lungs and they set up shop there
The reason for Theory 2 is that some of the blood cultures taken from my port have grown a small amount of a certain kind of bacteria that usually just means there was skin contamination at the site when the needle was placed, it is common, we all have it on our skin all the time, but the fact that several times now it has grown in cultures taken from my port (prior to this hospitalization, even) suggests that made the port is infected but just a little bit, not enough to cause me pain or redness or swelling but enough that it could be raining bits of infection over my right lung.
So I’m going to be here a minimum of another week. I am going to be asking for a bunch of help. I need to coordinate things like having food brought to me (I can’t eat anything here), having the dog walked (twice a day), hang outs (work dates even, I’m setting it up so I can work from here because I will go insane otherwise), and I’m sure a variety of other things I haven’t even thought of yet. If you are interested in helping with any of those things, send me a message on Facebook or an email to alicia dot merchant at gmail, and let me know how you could potentially help and if there are particular times or days when you could help. Sorry I’m asking everyone to be so specific, it feels really weird, but I guess it is also really weird to be confined to the hospital, particularly when you feel generally well.
And yes, I know to take it easy and take care of myself and not overdo it, my dozens of surrogate parents and two real parents. I ask that y’all trust that I am making the best decisions for me and my situation and level of health and energy and stamina, so please do not caution me against my decisions. Despite what I wrote above, I am not 15 years old, it just looks that way sometimes.
Oh yeah, and I still don’t have a voice. Hoping that’ll change soon.