Notes From Supergirl

My Diary from the Trenches

Day 54


Things seem to be looking up (KNOCK-ON-WOOD). They have me down to three antibiotics, 2 focusing on the infection. A couple of days ago they changed the formulation of the “intense” antibiotic to one that has not been causing me the intense shakes, which is making things much more pleasant. I have spiked some high fevers here and there, but for the last 2 days I have been virtually fever free and last night no fever at all. I felt so good yesterday that I put on all my Supergirl stuff (yes, I’m a dork, but I needed the feeling of empowerment), put on my best iPod running list and ran laps on the 8th and 9th floors. Okay, to an outsider it probably looked more like a slow shuffle but to me it was the beginning of an amazing sense of freedom that my body was still in there and in time it will come back. It also helped I was running in air conditioning because I could breath comfortably and just focus on my muscles. This was a big step for me.

When I got back to my room Roseann taught me some meditative chi gong exercises and then I settled in for the medicine.

The doctors have been very encouraging that they think we are on the right path and it is just going to take some time to work. They have mentioned Monday as a possible departure date and I’m really hoping for that. They say that every doctor gets that one case, once in their career, that just becomes an enigma – I got to be that case! Wahoo! Three cheers for me, but I’m ready to go back to being normal now.

I have a big weekend – a date with Brian tonight and brunch with my family on Sunday. I can’t wait to see everyone and I’m super excited that I’m starting to feel human again.



“Laughter is inner jogging.”

~ Norman Cousins

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Day 52


Things are starting to look up. I’ve made it through 2 nights and now 1 full day with low (99) to no fevers! They’re adjusting my antibiotics so that at some point in the near future I will be able to come home on just an oral medication, rather than a lot of IV fluids. We’re not there yet, but everyone feels we’re moving in the right direction. I even had the “Chief Liver Doctor” (no that’s not his title and I don’t mean to diminish him at all but you get my point) visit me today and explain that his review of my case is consistent with what the other two teams of doctors have been saying and it’s just a matter of giving the medication time to work.

So cruising at a close to normal temp most of the day, I got up and made my trek downstairs and out into the blasting Baltimore heat for a walk. I know, everyone has been telling me how hot it is out there but when you’re cooped up in an 8th floor, air-conditioned room, feeling fresh air of any kind feels good. But needless to say I didn’t stay out very long at all. I came in and did the stairs and then made a modified yoga mat in my room.

The afternoon brought the heavy-duty anti-fungal medication that they think is doing most of the work now. This is also the one that causes the full-body, painful shakes as a side-effect. I’ve been getting those shakes and they immediately come in and give you an IV shot of Demerol to make them stop. Unfortunately, they’ve had to give me larger and larger doses of Demerol each day to manage the shakes. This morning the doctor decided to try me on a new formulation of the same medicine and then they also came up with a pre-medication plan: Benedryl, Adivan (for nausea, anti-anxiety and also helps sleep), and a shot of hydracortizone. Additionally, my amazing nurse Rosann was here today so we hooked everything up, tucking me under the covers, I closed my eyes and Rosann did Reiki on me. A couple of hours later I woke up and had made it through the entire dose without one single shake! Awesome. Progress.

Yesterday, my lovely friend Holly came down and brought a little fiesta for us. Homemade guacamole, salsa and chips and her own homemade, mixed up, virgin-sangrias (including the fruit) and all was delicious. Pics are below:

The Goods

The Gals

My dad’s been doing a good job stocking my fridge here with Wegman’s food so I have to say that I have been eating a lot better over the last few days.

Completely unrelated to anything, there are a few places or moments in my life that I could define as “perfect,” but when I think about the moments that I most enjoy, there is nothing that makes me happier and more at peace than sitting on my back deck at home or in the Poconos and watching the stars – even listening to the sound of the bug zapper is somewhat soothing. When I was home for 2 weeks I did spend a lot time just sitting outside and enjoying that time of the day. I saw this quote today and it just summed up perfectly what I think of summer nights:

“The summer night is like a perfection of thought.”

~ Wallace Stevens

I hope to join many of you in savoring a summer night soon.

Day 49


Today was all over the place. I woke up, pleased to make it through the whole night without running a fever or having shakes, but my liver was in pain from the biopsy yesterday. So we started the morning with morphine. The doctors started their rounds and there’s no news yet on my biopsy. I honestly don’t expect there will because they waiting for first biopsy to grow something for over a week and nothing ever changed. In any case, they started me on another antibiotic today so I am now on 3 that cover everything and anything – in theory. They felt that when I came in two weeks ago, having me on these other 2 antibiotics kept my fevers lower.

I’m not sure that plan worked because around 11, I started running a fever 0f 104 which took a few hours to bring down to normal. My nurse and I were so disappointed! We were all hoping I would make it through the day without any fevers. I’m still holding out hope for tomorrow. But I’m also realizing I may not be going home anytime soon on until they can get all of this under control.

What’s funny is that at this point I fluctuate between getting really frustrated about this and laughing about it. I mean, seriously, 5 weeks of fevers and no doctors can figure out and make go away? What gives? The part I’m laughing about is that I’ve started to look at myself like the BP Oil Spill. All these experts out there and non one can figure out how to plug up this oil spill. It seems like someone should have an answer, but no one does. Believe me, even my doctors feel bad at this point.

On more positive news, my dad, brother and Steph came down and brought be lots of goodies from Wegmans. I got my salmon avocado sushi for dinner, a handful of lunches and dinners for later in the week and treats for breakfast. This should significantly improve my dietary intake for the next few days.

If you come to visit me, these are the sorts of things I need: high protein, healthy, foods to help me pack on the pounds. Fruit smoothies (Odwallas), anything with avocado, pre-made pasta dishes, etc. I’m not asking everyone to come running down here with food – I’m just offering up some suggestions for ways you can help me put these pounds back on!

Okay, I’m off to bed. Fingers-crossed for a fever-free, more mellow day tomorrow.

Day 48


I’m still here. Have I said that before? They started me on a new, very intense medication yesterday that should attack and kill my infection and fevers. Of course I’ve heard this before, so while I am optimistic, I’m not jumping up and down until I actually see some results like less fevers. This is an IV-only medication that comes with side-effects such as … fevers (can’t get enough of those), intense chills and shakes which I had the pleasure of experiencing yesterday, and it can also do a lot of damage to your kidneys so they have to give you lots of fluids both before and after the dose. I had those shakes before a few times when they gave me platelet transfusions. They give me another IV-medication that gets rid of them almost instantly. But they can also pre-medicate me for them to try to avoid the shakes altogether. Apparently everyone has the side-effects with this particular medication because it is so strong. That is good because it means it should do the job, but it is also why they wait to use it almost as a last resort. The good news is that with each subsequent dose, your body adjusts and the side effects diminish. If this is working for me, they can send me home on it and a home nurse can administer it. We’ll need to wait another day or two before we know that.

On my agenda for today is another liver biopsy. I guess they can’t get enough of poking and prodding me. In all seriousness, they want to look at another sample of the infection just to make sure of what’s there – I guess it’s their way of double-checking what they’re dealing with. Unfortunately for me, it is quite painful and I can’t eat or drink all day until the test is done.

Mentally I’m in a much better place today than I’ve been in the last few days. Brian brought the boys down to see me yesterday and my dad, my aunt Martha and my uncle Bob also came. Although I was, of course, running a fever and not feeling my best, it was a really nice afternoon and so good to see everyone. The boys were so well behaved and had a really good time making my bed go up and down and watching the big glass elevators. I feel like they grow each time I see them. It’s hard to feel like I’m missing what they’re doing day to day but I’m so proud of the people they are growing into.

Melly also came for a visit yesterday morning and brought me an awesome sandwich from Panera that lasted through both lunch and dinner. With all of my friends bringing me delicious food, it is getting really hard to eat the hospital food. Today I’m going to try to persuade Brian to bring me some stuff from Whole Foods and maybe I can make it through the next few days and on my way home without having to touch hospital food again. Yeah, I wish!

One other person I must thank is my amazing nurse Roseann (the triathlete) who gave me a beautiful gift of a dragonfly necklace. Dragonflies have very special meaning to me because they remind me of my mom. The dragonfly pendant sits on the string of the necklace and you are supposed to make a wish on it. When the string breaks, your wish comes true. This simple, but lovely gift was not only touching but it lead Roseann and I to have a very meaningful conversation about the struggles I have had thinking of my mom while I go through this journey. I have avoided it, to be perfectly honest, because of fear that somehow I was going to experience the same things she did. For anyone in my family and among our family friends, the irony of my situation so soon after my mom passing has not gone unnoticed and is obviously quite painful to deal with. Roseann was able to help me put those fearful, negative feelings into a positive, very enlightening perspective. She was able to teach me to embrace the idea that my mother is on this journey with me, helping and guiding me and that idea provided an amazing sense of freedom and comfort.

I don’t expect today to be as cathartic, but I am looking forward to seeing Brian and hopefully feeling a little bit better than yesterday – making me one day closer to getting home.

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