Notes From Supergirl

My Diary from the Trenches

Day 86

August25

I just have a couple of hours to go before I am finished with this next round of chemo. Overall I have fared well. I have the typical side-effects – rashes, diarrhea (for all you gory detail lovers), nausea. The nausea has been the worst. I actually slept the entire day yesterday because everytime I lifted my headed I felt like I was going to throw up. I woke up this morning and was able to eat some breakfast without taking any medication.

Technically I could go home today but I’ve opted to stay at least one full day after the chemo has finished to see how my fevers are doing and how I am feeling. I may go home this weekend.

I took some nausea medication that makes me completely exhausted so I’m going to go pass out now. I just wanted to let everyone know I was doing well and will write more soon.

Day 83

August22

Today definitely had it’s ups and downs. I’m doing fine with the chemo – fevers are gone are occasionally low, no extra aches and pains. The only problem I’m having is terrible nausea and the docs and nurses are trying to figure out a regimen to make it manageable. It’s making it nearly impossible to eat or do much else. I was lucky enough to get my dinner down tonight and I’m not going to move from my bed until I get my next dose of medicine so that I make sure it stays in there.

On another up, I was moved into a private room. I feel like I’m back at home now. Although I’ve slept most of the day, I’m still exhausted so I’m going to lay down and rest. Thanks Dad for bringing me lots of stomach-friendly snacks and thanks Robyn for the visit. It was great to finally see you and catch up. Hopefully I’ll have less nausea to report on tomorrow!

Day 82 – Chemo #2

August21

So we’re off. I was just pre-medicated with all of of my anti-nausea medications and the tubes have been connected. One chemo runs for 24 hours for 4 days and the other runs twice a day for 2 hours. I’m feeling pretty relaxed about the whole thing. I’m eager to get through this and move on with my treatment and, ultimately, the rest of my life.

I’m also feeling really wrestless. I left so many things at home by accident including books I wanted to read and my inspiration board. I finished all of my magazines, watched hours and hours of HGTV and have nearly finished listening to by books on tape which I don’t enjoy nearly as much as the paper books. The only paper books I have here are about fighting cancer. It’s not that I’m not interested in continuing to read these, but I feel like I need a break. I want a good novel or something funny. I’ll try to persuade some of my visitors to bring something.

Oh, there is great news that I haven’t mentioned. Yesterday was the first day since June that I went the entire day without a fever and no medication! Today has started the same. The new antibiotic they put me on must be doing something because I can’t get over the fact that I haven’t had fevers. I don’t think anyone can possibly grasp how awesome that is! The doctors are sort of shaking their heads, not quite knowing what problem they fixed but they’re all thrilled. If we can keep the infection under control, I could be feeling really good in a couple of weeks. Fingers-crossed, fingers-crossed.

They also decided to switch my picc line to the other arm. I’m not sure anything was wrong with the one that was in there but the doctor felt that they might as well pull it out in case it had any bacterial issues – lets just start fresh. That’s all fine and good except that the new picc is very sore and I just hope they didn’t open a new can of unnecessary worms. I’m not even going there now. I’m very optimistic about how this treatment will play out. My team of doctors has been incredibly reassuring and I feel good about everything. It’s weird to be excited about chemo, I know, but the excitement of knowing you are so much closer to getting your life back is an unexplainable, amazing feeling.

Day 81

August20

Today is looking up and I am feeling better about the decision to move forward with the chemo. The infectious disease team met with me this morning and discussed research they did yesterday which revealed that it is not uncommon for candida fevers to last several months. Additionally, there was research stating that there was no reason to delay chemotherapy treatment with an active infection. I also asked my oncologist many questions including the pros and cons of delaying chemo to wait for the infection to clear. She felt that there was greater risk in delaying chemo. Should I delay chemo and even one cancer cell comes back, I have to start over and will no longer be a candidate for an autologous transplant, I would have to have a donor transplant. This is not what I want to do.

I know that there is risk involved with starting the chemo but the ID doctors helped calm a lot of those fears this morning and the oncologist emphasized that my immune system will really only be down for about 10 days and she felt confident that they can get me through that. I’m not making this decision lightly or simply because it’s what the doctors think is okay, I’m making this decision to start because I feel more confident that this will be okay. I was a little emotional yesterday. I want to move forward with my treatment. Yes, I’ll be nervous and yes, chemo sucks and yes, I won’t be surprised if some other lovely side effects show up. But mentally, when I start tomorrow, I’m going into it the same way I did day 1 – this is a journey and am focused on where I’ll be on the other side. This is just another hill to climb.

One more thing – thanks Heather for the great visit last night and thanks Melly for your sound advice, as always.

Day 80

August19

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.

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