Notes From Supergirl

My Diary from the Trenches

Day 60


Day 60. On day 60 I am happy to be home in remission and savoring the beautiful weather. Things have been going pretty well. I’m getting more comfortable with the IV medication, though this is the first night I will have to do it entirely on my own (wish me luck). I’ve changed my Tylenol schedule so I’m taking more in the evenings in an attempt to get me through dinner time to bedtime. Unfortunately bedtime is still really rough. Because the fevers always break in the middle of the night while I’m sleeping, I’m not getting much sleep at all. I won’t go into the gory details of what happens when my fevers break, but it isn’t pleasant. Next Tuesday will be one full week on both medications and I’m hoping to see some fever relief after that. In the meantime I’m managing.

I got a new wig today. I like it better than the one I had but it still feels a little odd to wear fake hair. However, with it on you could never tell I was in treatment for anything which is nice occasionally. Thank you Robyn for going with me and going through all of the styles. It was fun to see what haircuts I will never give myself in the future. And I do look best as a blond. We tried a red wig because I always considered that for a change and I just don’t think it’s me.

I’m looking forward to seeing some friends tonight and then relaxing tomorrow. I hope everyone has a good weekend.

Day 59


So I really made it home. Today started off great. I actually feel a lot better physically coming home this time than I did the last time. I have more energy and, even though I have the fevers, they don’t seem to be effecting me as much. Of course by dinner time I was running my usual evening high and had to slow down, but overall I think I’m doing okay. The challenging part is that I have to give myself one of my medications through IV. The home nurse came and showed me how to set it up and run it but it’s very intimidating. She’s going to come again tomorrow to watch me try to do it myself. She swears it will be a piece of cake after a few times.

I don’t have much else to report on except that it’s great to be home with the kids. I continue to be amazed by how much Kieran changes everyday and Ty is my steadfast little man. I’m hoping to get out and do some things in the coming days. Thanks for everyone’s well-wishes and warm thoughts – as always, I am truly grateful.

Day 58


The doctors are sending me home today! I am very excited but, I’ll admit, also a bit nervous because I’m going home still being sick. They all got together and had a big meeting about my mysterious infection yesterday and decided that it has stabilized – it would be too soon to see it decline. In addition, they decided that they would put me back on one of the earlier medications they had used that does not have the harsh side effects of kidney damage, fevers and shakes. What that means is that I can go home and have a home-nurse come in to give me the IV medication for an hour a day. That is a far better scenario than having to come to the hospital for 4 hours a day, everyday.

I’m still running the fevers, but they are fairly manageable – still annoying and exhausting. The doctors feel it may still take a couple of more weeks for these to completely go away. Unfortunately they won’t let me take ibuprofin anymore so I am limited to 1 Tylenol every 6 hours. I will just do the best I can.

I think I went through a little of this anxiety when I went home last time. As much as I want to be home, in the hospital every little ache, pain, complaint or curiosity is dealt with immediately.  At home, I’m alone, left to wonder and worry about the tiniest little things. I’ll be working very hard to get over that. I’ll be focusing on trying to do as much with the kids as possible and hopefully that will keep me plenty distracted!

Day 57


I’m getting closer to going home but the doctors have been clear about making the point that this infection isn’t going away any time soon. They say that it can take 3-6 months to clear up – I’m just finishing up my first month so I guess I’m making progress. The infectious disease doctor that came in this morning was downright depressing, telling me I had the worst case of this type of infection he had seen in years and he didn’t feel they had given enough time to some of the different medications to work because they were baffled by the whole thing. Nice to know.

My oncologist, on the other hand, is a little more optimistic. She wants to get me home and says that as soon as my kidney function is back to normal (which should be tomorrow), I should be okay to go home. Unfortunately I will have to come back to the hospital everyday for a while to get my IV medication. I’ll probably come in from 7 am to 11 am so that I’ll have the afternoon to spend with the kids. I don’t mind driving down here daily if it means I get to be home.

Once I go home, I’ll probably be there for around 2 weeks or as long as it takes for this infection to be brought under control so that I can start the next part of my treatment.

What I’ve learned through all of this is not to expect anything to go as expected. Whatever lies ahead is sure to have it’s fair share of bumps, but I’m hoping that “having the worst case of this infection seen in years” might cover me for the bad stuff. Maybe the rest will be smooth sailing??? I can only hope.

Day 56


Overall, things seem to be going in a good direction but it has been rough. A couple of days ago the doctors noticed that my kidney function numbers doubled, so they decided to pull me off of the anti-fungal that I was on, as well as all Ibuprofen because that can impair kidney function as well. However, they also didn’t want me to take Tylenol because that processes through your liver and they didn’t want anything interfering with fighting the infection. So yesterday following a blood transfusion I started to run a low fever which went up and down all afternoon and all through the night. I didn’t get out of bed for hours.

The result of all this is that the doctor now feels confident that my fevers are still coming from the infection and the fact that I have been taking medicine for them has been masking them. But, she considers the infection stabilized, which is good. She said that if the infection were progressing, I wouldn’t be running the halls or walking around – I would still be in the pain I was in a few weeks ago. Unfortunately, the fevers are just part of it and for some people they last for weeks. As far as going forward, we are doing another CT scan today to check on the infection and I will stay off of the one anti-fungal until my kidney function returns to normal.

As part of the process of bringing my kidney numbers back to normal, they have been pumping me full of fluids for two days. My face is so swollen you would think I was in a boxing match – and clearly lost! But the good news is that when they weighed me, I was back up to my normal weight thanks to all this water.

In between all of this stuff, Saturday night I got to have date night with Brian – sushi and video games. And Sunday morning, Amy, Adam, my Aunt Helen and the boys all came down and we did brunch in the park across the street. It was really great to see everyone.

What happens now? They’re letting me have Tylenol every 6 hours to control the fevers and we’re watching and waiting to see if the oral medication may help reduce the fevers as well, which would be awesome because then I wouldn’t have to go home with an IV medication. As far as when I’m going home, I was told that if my CT scan shows improvement and my kidneys get back to normal, that will probably be the ticket. At this rate, that could be tomorrow or Wednesday.

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