Notes From Supergirl

My Diary from the Trenches
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Day 80


I’m blogging early today because I need to vent some fears and build my emotional strength back up. I met with the team of infectious disease doctors and they continue to be baffled as to why my liver infection and fevers are taking so long to go away. It has been 6 weeks and there have been small improvements but nothing like what they would expect. They would expect that it would gone by now. It has cleared in some areas like my lung and spleen but the spots on my liver persist, though smaller. The decision that has to be made is whether to go forward with my next chemo or wait even longer for this infection to clear. Everyone seems in agreement that we can’t wait any longer to start chemo. So, now the issue becomes, what happens to my infection once we start this and kill my immune system off again? I could see clearly in the doctors’ faces today that they are worried about that too. They are worried that it will get worse again. They are worried about high fevers. When they are worried, how am I supposed to feel? I feel like I’m about to put my life completely at risk in just a few short hours. I’m petrified of what will happen. I want to be strong but I’ve had an infection that the doctors’ can’t get rid of for almost 2 months. Yet, I am putting my faith in them that this is the right thing to do.

It’s funny, I promised myself a long time ago that I would not ask “why me?” because my life has been blessed in so many wonderful ways already. I just wish I could be ordinary right now. I wish I didn’t have to be the 1 strange case in 10 years. I just read an article about why it seems that we go through periods in our life when everything comes crashing down at once, and the answer was that it’s the universe’s way of telling us to rest, really, deeply rest. I believe that. I believe things happen to refocus in the right direction. I believe this experience will change my life in ultimately positive ways. I just wish the process of getting there wasn’t so fever-filled and scary.

Day 40


My computer and clothes arrived this afternoon and I am finally feeling connected to the world again. And I have lots to update everyone on. As Brian mentioned, on Thursday I woke up in severe pain all over the right side of my body. I had started having the pain on Wednesday and brought it up to the doctor when I saw him, but he said we just had to “watch and wait.” I knew something wasn’t right though – to me it was an indication that the infection was getting worse, not better. So Friday morning we came down to the hospital, ran bloodwork and ran another CT scan which revealed that my infection had gotten significantly worse. Essentially it had not responded at all to the medication I was on. Originally, I just had some spots on my liver and a couple of tiny spots on my spleen. Now I have large spots on both. My liver is slightly swollen as a result and it pressed on nerves that surround it. Those nerves are causing referred pain up into my shoulder area. They started me right away on three different antibiotics and on Monday they will do a needle aspiration into one of the spots on my liver to see exactly what they’re dealing with.  They will also be able to test different medications on the sample so that they can be sure that the course of treatment the select for me WILL work.

My oncologist said this is just a “bump in the road.” It’s serious, but not life threatening and we just need to figure out how best to treat it. They want me to stay on as much pain medication as is tolerable because having pain like I’m having can actually cause you to not breath properly which can lead to pneumonia. Although I started slowly I’ve been taking a lot more medication throughout the day. The only problem is that it completely wipes me out and either that or the three antibiotics, is giving me nauseau. But, don’t worry, there’s a pill for that!

Oh, and one more thing, I have some sort of infection in my PICC line. Again, we’re hoping this is minor but we have to wait for the culture to grow and reveal itself.

Brian said I might go home Monday,  but I don’t anticipate going home before Tuesday, unless my body shows major improvement after this weekend.

To give you an idea of how bad the fatigue is, I started writing this post around 6 pm and it’s now 7:45. While eating my dinner and writing, I’ve probably fallen asleep ten times and woken up with food in my mouth.

Day 20, By Jess


The last two days have been the most miserable I have ever experienced. As I’ve talked about before, I developed an infection in my colon as a side effect of the chemo. The infection itself has caused an incredible amount of pain which they treat with morphine. When I started running low grade fevers last week, they said that is was probably just because of the infection.  By Saturday morning, the fevers were getting higher and it was mixed in with them giving me premeds for platelet transfusions. They would give me Tylenol and Benedryl and all kinds of things through IV then start the platelets, at which point I would start running a fever or have a reaction to the platelets, like severe shakes. By last evening, my fevers were running over 105. The decided that I was having a “drug fever” which is when your body starts to reject the antibiotic. After what seemed and unbearable wait while I felt my body burning up, they finally got me under a cooling blanket. This is a plastic blanket that fills with water regulated to 80 degrees. It keeps my fever from going up and if I am able to remain comfortable under it for a long enough time, it brings my fever down.  Tonight I have gotten the fever down to 100.3.

Hopefully the fevers will remain manageable and eventually go away altogether when the medicine is entirely out of my system. That just leaves the stomach infection. If you were to look at my stomach right now, I actually look like I am 2-3 months pregnant because my colon is so swollen and inflamed that it is bulging towards the front of my abdomen. The pain part is manageable with the morphine but the other huge issue is that this is causing such bad bathroom problems that I have actually opted to wear adult diapers until we work this out. I share this because it is actually hilarious to see what I look like in an adult diaper. At least I’m laughing about it! Yesterday they told me just to try to eat what I wanted and see how it went. Today I asked to be given IV fluids and we all agreed it was best for me not to eat anything.

Nothing that has happened to me is particularly unusual for someone in my situation. I’m sure that people have suffered with other side-effects that I was fortunate enough not to get. And the doctors keep reminding me that once my white cells start regenerate and climb, which should be by tomorrow, things will start to improve quickly. That is what I need to focus on right now because that is what is going to get me home.