Notes From Supergirl

My Diary from the Trenches

Day 146

October25

Today was a pretty great day. My counts came up again this morning and my red blood cells actually came up as well which they’ve always needed a boost for in the past. I’m also keeping all kinds of other levels in a good place (potassium, magnesium, etc.) which has meant fewer pills to fix those things. Overall, the only thing lagging behind and not responding well to the treatments we’ve tried is my platelets. But this was to be expected and I went through this with each of my previous admissions. My platelets had dropped to 1,000 overnight and our transfusion today brought it back up to 3,000. At least it was a bump in the right direction and not another drop. They added a steroid and another medication that should help my body to hold the platelets it has and potentially increase their production. I’ll probably have another transfusion and at some point my body will start making their own.

The increase in white cells has practically erased my mouth and throat issues. I ate completely normally today and just have some minor irritation still in throat when swallowing. Anything super spicy or acidic is still a problem for my mouth but it hasn’t stopped me from eating a noodle teriyake dish, peanut butter granola bars or dark chocolate. Maybe it was the 2-day withdrawal from chocolate that had me in a little funk lately. Let’s not let that happen again!

They also re-scanned my abdominal region today to check on how my liver infection is doing. My infectious disease doctor feels that it is probably gone, but we will continue treatment for it for a few months to make sure it stays that way. My body temperature has also dropped back to a normal 97.9 and my heart rate seems to be coming back down. I’ve only had two low-grade fevers this time at two isolated moments on those days. They immediately tested me for all kinds of things and started me on 4 antibiotics. Apparently, one of my blood tests did show a strep somewhere but all of the medications took care of it within 24 hours. They don’t mess around here at all. When you are discharged, you are given a card that one nurse refers to as your “get of of jail free card.” It indicates that you are a recent transplant patient and, should you need to go to the emergency room for anything, they take you immediately. Even a low fever could potentially be indicative of something like pneumonia and that needs to be treated as fast as possible. It’s reassuring to know these things are available to me once I go home, but I hope to never need it.

The only negative to my current situation is that my hair finally started to fall out again yesterday. However, this is the last time that will happen and once it starts growing back in, it is coming in for good!

Other good news today, the Ravens squeezed out a win in a game that was way too close for comfort and I had a lovely surprise call from Suzanne this morning which reminded me that there are other super moms who have been through things like this before and everything worked out just fine in the end. Suzanne, I’m so sorry I never got a chance to call you back! Expect to hear from me this week. And Brian’s mom came down yesterday to stay for the week to help take care of the kids. Since the boys are now bunking together in Ty’s room, we are converting Kieran’s room into a more official guest room for now. At first I wasn’t sure how I felt about it, but now I am super excited to have a new room to decorate and a dedicated place for guests to stay. And with time on my hands after I get home, this will be a great creative project for me to work on. Who wants to be my first guest??? I’ll start taking bookings for December. And you all know how much I like to make breakfast so a lovely brunch will be included in your free stay.

Lastly, I came up with an awesome idea for a Christmas present for someone special this year. It will take some time to plan and pull together and, fortunately for me, I just happen to have some time on my hands. Like I said before, I will be going overboard on the holidays this year. They have never meant so much to me before and I want, more than anything, to be able to give gifts to my family and friends that show them how truly appreciative I am of their love and support throughout these last few months.

The nurse I had tonight gave me a mixed cocktail of Ativan and my pain med in one fast injection. That’s not usually how they do it so I’m quite relaxed, painfree and on the verge of passing out. Before I go, I want to send a shout out to Bryn and Karen who contacted me this week. It was so great to hear from both of you and I hope I’ll see you soon. Karen, I remember looking at Life of Pi when we started our reading group! I’ll have to pick up.

So with that I’m going to go to sleep and eagerly await my 4 am blood draw to see what my numbers are doing tomorrow. Good night.

Day 145

October23

Good news … my counts started coming up today!!! I am very excited about it, but we still have a ways to go. They gave me another platelet transfusion today and, again, nothing happened. They are talking about giving me some kind of immune steroid tomorrow before trying another transfusion. Now that my counts made a budge in the right direction, it will be interesting to see what my platelets do on their own tomorrow.

My mouth and throat were also improving today. They’ve figured out the right dose and timing of the pain medication to make things manageable. However, I’m now on the pain medication and four different antibiotics so I am in a little bit of a zombie state. I’m coherent and awake but I’ve caught myself just staring off into space with my mouth wide open and then I snap out of it and wonder what I’ve been doing for the last 5 minutes. I think that if I let myself, I could probably sleep through the whole day.

My cousin Mike drove all the way down from New Jersey to see me today – thank you Mike! We had a great visit with he and my dad and they brought me some dairy/lactose free sorbet. It’s as close as I’m going to get to ice cream for a while and perfect for my sore throat.

I’m going to get my PJs on, get some pain meds and watch HGTV until I pass out. I know you are all jealous of my wild Saturday plans ;)

Day 143

October21

My white counts were the same as yesterday which means there’s a possibility that I have reached the bottom and plateaued, but we won’t know that for sure until tomorrow. I’m in the middle of my second platelet transfusion today. As usual, the first one knocked my counts lower. Hopefully this one takes.

I’m continuing to have a hard time with my mouth and throat. I’ve moved up to the heavier pain killers but it’s not helping much. I gave up eating solid foods today and am sticking to liquids and mush. It hurts to chew and swallow and I kept trying but I couldn’t take it anymore. It will be rough and hungry for a few days but as soon as my counts start to come up, things should start to improve. As much as this hurts and is annoying, I will take this over a liver infection and 3 months of fevers any day!

Robyn came to visit today and brought me a pile of new reading materials. I also got an awesome care package from Gina today including magazines and pie-flavored energy bars. As soon as my mouth heals, I will be diving into those. And to close out the night, I finally got to talk to the kids on the video again. My intermittent internet connection has made that very challenging. Kieran wanted me to go downstairs with him to find his pillow and didn’t understand why I wasn’t coming along. He said, “mommy, get out of that picture!” It was pretty cute.

I’m off to pass out from the pain killers.

Day 142

October20

My counts were pretty low today. They’re assuming they will drop some more tomorrow. I had to have a red blood transfusion today and I’m guessing tomorrow will be platelets. My mouth and throat are in a lot of pain. I managed to eat but it’s getting increasingly difficult. We’re working on upping my pain medication to try to help. I know it’s going to be hard for a few days – I’m just hoping my counts don’t take that long to come up so that this pain can go away relatively quickly.

I also managed to sleep quite  a bit today, which was kind of nice for a change. Elizabeth came for a visit and it’s always great to see her. I’m looking forward to seeing Robyn tomorrow.  I’m feeling pretty wiped out so I’m not going to ramble on much tonight. Tomorrow I will officially have made it through 2 weeks. I’m either 2/3 of the way there or half-way there. Either way, we’re making progress!

Day 141

October19

Today was a hard day. Besides worrying about my own health while I’m here, the only other thing I ever worry about is something happening to Kieran. He is two years old, crazy and fearless and does things all the time that put himself in danger, not realizing it. When I am home, I watch him like a hawk. I am not going to go into detail, but two of the things I have most worried about with him happened today and fortunately he survived both of them and is fine. These things could have happened just as easily if I were at home, though I think one of the incidents would have been less likely to be as scary. But it doesn’t matter because I’m not there to be able to do anything about it. And since learning about these two things, I learned of other things that have happened which, again, he survived, but go further to show how carefully he needs to be watched. Again, I know that things could happen while I am there too, but I understand how he thinks, I look at everything and think “how would Kieran climb that or open that or jump off of that.” Even though other people care about my child, they don’t think the way that I do. They don’t realize what he is capable of. They don’t think far enough ahead to stop him before he could do something that would put his life in danger. I am just so unbelievably frustrated that I can’t be there to protect him!

This is not helping my heart rate at all. It has probably tripled in the last few hours. I know I need to put this aside and stop worrying about it. I need to try to have faith that my children will be okay for the next few weeks. I need to do everything possible to focus on healing myself so that I can get home to them. It’s funny that this last week, I had started to try to let things go. To realize that I can’t control things at home and I have to accept that. I was starting to come to peace with that but I’m not sure how to do that now. There is also nothing more frustrating than to be told that these things just happen and I need to stop being so upset about it. Anyone who is a mother would understand how hard it is to sit in a hospital room and not be able to be there to protect your child. At the very least to give them a hug like you’ve never hugged them before after something happens that could have taken them from you. I’m sorry but I’m allowed to be mad as hell and I’m allowed to be sad. Yes, things happen, but you tell me how you would feel if you were taken away from your children for 5 months when they’re too young to understand why? I’m allowed to feel all kinds of things and at least deserve to be respected for that.

Okay, deep breaths. I’m sorry, I needed to vent a few things. There is so much more to going through this than what happens in a hospital room. As for the hospital room today, my counts are headed down and I expect I will probably need a platelet and red blood transfusion tomorrow. Both are par for the course. Everything is actually going on the schedule they had anticipated. In the best case scenario, I might get lucky and see my counts start to come up over the weekend.

I want to end on an upbeat note and I need to say there are a number of people who love my children and take care of them as well as I would and I will never be able to thank all of you enough for that. I am also truly grateful for my friends who have stayed with me side by side on this journey and helped me work through days like this. You know who you are and I love you.

Update

I finished writing this post and my internet was down so I went for a walk in the hall. Just as I was getting my mask, my nurse Roseann popped up behind me. It couldn’t have been a more perfect time to see her. We visited for about an hour and she told me all about her amazing experience in Hawaii doing the Ironman Triathalon. We also talked about my day and how to emotionally deal with the challenges I’m facing missing home and worrying about my kids. She and I have always been on the same wavelength when it comes to the power of positive thinking, visualization, mediation, etc. I realized that I need to stop worrying so much about Kieran because I believe so strongly that many of the things we worry about we make realities for ourselves. If anything, I should focus on the fact that he has survived so many things already, it may be a sign he has much greater things to do! So with that, I am releasing him from my worries. I will always do everything in my power to protect him, guide him and teach him to make smart decisions but I need to have faith he will be okay when I am there and when I am not. My blood pressure, by the way, was way up when they took it a little while ago. I clearly need to let go and get back to working on my own health. It won’t do anyone any good if I lose it now. Thank you to Roseann for coming by and helping me process all of this. I am back on track.

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