Notes From Supergirl

My Diary from the Trenches

Day 152


My platelets were at 10,000 this morning! All I’m going to say is that plans are in the works but I’m not going to say anymore because I don’t want to jinx anything. The boost in my platelets obviously helped boost my mood a little. I also had a really nice visit with Matt and my dad today. And, I actually finished reading “Midnight in the Garden of Good and Evil,” a book I started reading three years ago. I think I said this before, but finishing that book was on a New Year’s resolution list from two years ago so I am feeling quite accomplished right now! After that I took care of lots of little odds and ends I have been working on and then jumped right into a book called “The Blessing of a Skinned Knee” that Robyn gave me (thank you Robyn!). I am nearly a quarter of the way through it already, that’s how much I am enjoying it. The book is written by a child psychologist who discusses how to raise self-reliant children. I’m not sure I’ll have this finished by the time I go home, but I will plan to finish it once I get there.

Overall, I’m a little less anxious today. Of course the platelets have helped, but I’ve also been doing a lot of visualization and re-listening to “The Secret” on my iPod. Additionally, I think it helped to have visitors today who reminded me that worrying is a waste of time. Everything is pointing in the right direction right now and my body is doing the hard work it is supposed to do. The best I can do is to try to stay healthy and take the right precautions so as not to end up back in here. The rest is left to fate which, I would like to believe and hope, is working for me.

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Day 151


The last 24 hours have been challenging. Last night, around 5 pm, I started to get a headache that turned into a migraine like nothing I have ever felt before. Around 2 am, they took me for a CT scan to make sure that I wasn’t haven’t any bleeding in my head or sinus issues. The CT came back clear but the migraine lasted until around noon today. The rest of the day I was just tired and anxious, hoping the headache didn’t come back. I decided to stay off of pain medication today to see if that helped the way I was feeling. I think that it helped make me feel a little bit more normal, but I was still really tired. The good news in all of this is that my platelet count came up on its own to 7,000 this morning. I only need to get up to 10,000 for them to let me go home. Of course I should be excited because this could be as soon as tomorrow, but late afternoon today, I noticed my temperature starting to go up. I have mild chills now and, I’m not going to lie, am on the verge of freaking out that after making it this far and doing so well, I’m going to start running a fever now.

I have been meditating like crazy and taking a lot of anti-anxiety medication. I don’t know what’s wrong with me. For 5 months I have held myself together and stayed strong and now, all of a sudden, I’m running through all these fears of what will happen to me. Everyone keeps telling me to relax and take things day by day and I am trying to. I think I’m in the same sort of place I was with my last admission where I’m missing my kids terribly and I know that they have things coming up that I could miss again. Yes, it’s only Halloween, but it’s really important to Ty and I don’t want to disappoint him. Tonight I’m missing a party at their school. Life goes on without me – my friends are there, my family is there, my kids are there. I know everyone is thinking of me but this is one of those moments when I slip into the “why me,” “this isn’t fair,” kind of modes. I know I shouldn’t go there. I know there is a possibility I could be going home in less than 24 hours. I know I’m doing really well and I know this part of it will be over soon.

I remember that someone who went through this before me told me he was very emotional at the end as well. Maybe it’s all of the medication they give us or maybe it’s the fact that we fight so hard for so long and then it’s hard to believe there is really an end in site. What I can say is that the longer the wait, the harder the fight, the sweeter the victory. Nothing in the world will ever feel as good as hugging my kids when I finally get home. Nothing will feel as good as waking up to my family every morning and going to sleep with them every night. And with everything I have in my body, I will fight to never be taken away from them again. As Chip reminded me, I am the master of my fate, I am the captain of my soul.

Day 150


I’m not going to write much tonight. I have been sleeping most of the day and plan to go back to sleep shortly. My platelet count was the same this morning as yesterday morning. They decided not to give me any platelets today because it keeps dropping my count, so it will be interesting to see if I go up at all tomorrow. I really appreciate all of the platelet energy you all sent me today :) Let’s hope it works! Okay, I have a pretty bad headache so I’m going to lay down. Sorry for the short report but I’ll write more tomorrow. Goodnight.

Day 149


I have reached that point that’s full of ups and downs and I’m trying to remain level-headed and somewhat unemotional about the whole thing. Basically, all of my platelet transfusions have been unsuccessful. However, this morning my platelets came up on their own from 2,000 to 4,000. My doctor came in and literally gave me a fist bump over it and was practically jumping up and down. And again, he said he thinks I’m going home by the end of the week and the only reason I’m still here is because of my platelet count. So with a sign that my platelets may actually be producing on their own, it seems like reason to feel relieved and look forward to getting out of here. However, they decided to try ANOTHER transfusion today thinking my body would now respond to it and, of course, it ended up dropping my count down to 3,000. I’m trying not to be disappointed about it but after a day of 3 doctors telling me “you’re going to be out of here by the end of the week,” it’s hard not to feel a little deflated. I’m still hopeful my platelets will continue to come up on their own but it’s challenging.

I’m not depressed or having a melt down over this – I swear! I’m just so used to the good news/bad news thing that I’m trying to just take it day by day and not get too excited over anything until I actually get to go home. I think what is making it hard is that my oldest son keeps asking me if I’ll be home by Halloween and I can’t give him an answer. In the past he hasn’t cared much about specific days for my return, but this time it really matters to him. The thought of disappointing him just breaks my heart. I have confirmed that they will discharge me on the weekend so I still have 4 days to make this happen. Please send me all of the positive platelet energy you can!!!

Everything else is looking good and feeling better. I’ve had a lot of visitors over the last two days including Brian from Ulman Fund, Holly who introduced me to yet another of Amy’s frozen foods I may end up addicted to, Roseann and Trish, my dad and husband Brian. Oh, and Heather sent me an awesome package of pumpkin pie flavored candy corns! I may rot my teeth out here but at least I’ll go home cancer free ;)

Day 147/148


I didn’t get to write last night because I was so zonked out from two doses of Benedryl yesterday. People were coming in and out of my room and I had no idea. I usually sleep well but fairly lightly, but yesterday I was gone. I had a red blood cell transfusion in the morning, followed by a platelet transfusion and then another red cell in the evening. My white count was up to 2,800 but platelets started the day at 3,000. After all of that bragging I did about my red cells, they took a dive yesterday down to 5 something from 8 the day before. All of the doctors were checking me for signs of internal bleeding or other issues because they couldn’t understand why the sudden drop. I appear to be fine so hopefully they will be back in the normal range today. As for the platelets I got a slight boost up to 7,000, which is better than nothing, but I really need to get up over 10 to be safer and up over 20,000 to consider going home. It seems that my body is starting to produce the cells on its own, so therefore they stopped the neupogen shots last night and this morning’s blood test will truly be a test of what my body is doing. Fingers-crossed, things keep going in the right direction.

I’m trying to ween myself off of the pain medication. Yesterday I only did a dose in the morning and one in the evening and was still able to eat my normal meals. My heart rate is back down to normal and my CT scan showed that the liver infection is going away. I’m very upbeat about everything but I’m having a lot of anxiety. I’m on so many different antibiotics and other medications that it’s messing with my system and my head a little bit. Although I should feel really good right now, I feel more tired than I had been, my energy is a little lagging and mentally I’m in sort of a blah place. I suppose I’m just anxious about what my cells will do in the coming days. I’m also dealing with my hair falling out again and a swollen, puffy face from all of the fluids they gave me over the last few days. The hair isn’t that big of a deal. I went into the shower with hair yesterday and came out with most of it gone. I’ll be fine when it’s finished falling out – I prefer that over the several days it takes for it all to happen. Plus, once it’s all gone, I know when it comes back, it’s coming back for good. As for my face, it will take a few days to get rid of all of the fluids and start to look normal again. I’m not as vain as I’m making this sound, it’s just that I feel better about myself when I look like myself and not a big, bald balloon head.

Now that I’m so close to the end, I’m starting to stress about the “what’s next” part too. When I can’t sleep at night, I find my mind spinning in all sorts of directions. Mostly I try to focus on all of the positives that are coming, but occassionally I think about little logistics like my job – will I have one or will I have to find one? Because I feel so strongly that stress may have contributed to me having this disease, I also feel incredibly strongly about keeping stress out of my life in the future. But I can’t live in la-la land. I have responsibilities and a family to take care of. I had a work project that had been put on hold since I was first diagnosed. The client had delayed it since November 2009 and suddenly popped up in June 2010 to say they wanted to do it and I had to explain that I wasn’t going to be able to do it now and they should find another designer. Instead, they said they would wait until I was out of the hospital (which I explained might not be until late Fall). They said that was fine. Then yesterday they contacted me to say they decided to find someone else to work on it. I’m actually glad they did, but now I have to send them the money for their initial deposit from last year. I’m actually hugely relieved not to have the project to do because I would have stressed myself to complete it when I got home, but it still bothered me for some reason and set my mind on a path of wondering about my career and will things work out like I want them to? Have some doors closed and others opened or will I need to forge an entirely new path?

I’ve had months to focus on nothing but my health, which I believe is/was the most important thing to do. I still have a couple of months left to continue to do this to assure I am good for the long haul. But lots of things have been put on hold during that time and I have managed to imagine my own solutions and new goals for the road ahead, but that doesn’t mean that everyone else will have the same ideas as me. I know that my future, just like my present situation, will have to be taken day by day. I am excited for it and have faith that the days will be richer, more peaceful and far more meaningful than before. I just hope I am able to maintain the strength I have gained through this to face whatever new challenges lie ahead.

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