Notes From Supergirl

My Diary from the Trenches

Day 120


I have been officially scheduled to go in for my stem cell transplant next Thursday, October 7th. I met with my transplant doctor today and he put my mind at ease about a lot of things. I am actually fairly eager to get in and get started now. I also got great news about my heart. They had done an echo cardiogram in July (during my fevers) which showed some decrease in my heart function. I had a test done last week which showed it has improved since then and now into the low, but normal range. I am not at risk for anything, but it will be interesting to see if this improves once I am finished with chemo and back to a regular exercise regimen. Fortunately, the chemotherapy that I have left is not supposed to have much affect on your heart, although anything is always possible.

I am super excited that one of my aunts will be coming to stay with the kids for a few days once I go in. My kids are excited too!

There is not much else to report except that I feel like I’ve been living my life fairly normally now for a little while. As always I want to thank some of you have commented or emailed me directly about people you have shared my blog with. I am so sorry for anyone that has to go through something like this but all I can say is never stop fighting. And thank you to my friends and family far and wide (California, Arizona, Massachusetts, Michigan, Canada, Maryland, etc.) who have stuck with me through this. We are getting there!

Day 117


I haven’t posted anything in quite a while because, fortunately, I’ve been busy and exhausted by evening. So here is a quick update on what’s going on. Last week I went in for bloodwork and additional testing as part of the pre-transplant process. All of my counts have been going up really well and by Thursday my platelets were up to 117,000 (this is a great number for me). As a result, I had my bone marrow biopsy done on Thursday and I will now be scheduled to go in to start the transplant the week of October 4th. Although that only gives me one more week at home, I am actually eager to get started because the sooner we start, the sooner I finish and the sooner I begin recovering. My greatest hope is to be in a good place – feeling good, being healthy and continuing to be in remission – by the holidays.

Being at home has been awesome. I gained 3 pounds this week and hoping I can do the same next week. I won’t lie, I’m enjoying eating as much as I have been but I’m a little overdosed on sugar. I’m trying to mix all of my healthy habits with a heavy dose of desserts. Last week’s gain can be attributed to Cheesecake Factory, Boost Plus, an entire baked brie that I consumed by myself over a few days and hopefully a few muscle-building work outs. I do have to thank all of you who sent me dietary suggestions. It seems unanimous that macaroni and cheese is the meal of choice if you’re looking to gain a few. I might make that tomorrow.

I should be better about blogging this week. Thanks for sticking with me.

Day 112


It turns out I was completely wrong about my platelet count. I went to the hospital today to get a transfusion and found out my platelets were at 70,000! This is a good number and it means that my body is making platelets on its own again. My white blood count and red blood count were also very good. I had convinced myself my platelets were probably around 10,000 because I saw 3 tiny red dots on various parts of my body (a sign your platelets are low) and that I was probably anemic (low red count) because I needed coffee to wake myself up this morning. What a wonderful surprise that I was wrong about all of it. As for the coffee, that was first cup of caffeinated coffee in well over 3, maybe 4 months. Although I had nervous shakes most of the morning, I rather enjoyed it :)

I go back to the hospital on Thursday for more tests but I have two days of freedom to enjoy before then. Somehow I think they’ll involve more coffee and tons of food. I have 13 pounds I’m trying to pack on in the next 2-3 weeks. I have been eating almost every hour on the hour and I’m not having a lot of luck so far. I know, boo hoo, poor me. But really, I’m just skin and bones right now and doing everything I can not to be. There are those who suggest that I eat as much fast food and sugar as I possibly can and then there are those suggesting that I load up on healthy, calorie-dense proteins. Although I’m not big on sugar, I have downed a lot of ice cream and dark chocolate in the last 72 hours. As for protein, I’m trying to eat it where I can but I would certainly say that carbs are looking much more appealing right now. I’m open to any dietary suggestions!

Day 111


I didn’t realize I had skipped writing for so many days. That’s a good thing, obviously, because it means I’ve been busy enjoying my life or have been too exhausted to say anything meaningful by 8 pm. Things are going well at home. My anxiety has calmed dramatically though I’m still curious to get to the hospital tomorrow and see where all of my blood counts are. I am going for a platelet transfusion and I suspect they are pretty low by now. Maybe I’ll get lucky and it will turn out my body has started to produce more on its own but I’m being extra careful all the same. I also go back Thursday for some more tests in preparation for the bone marrow transplant. Quite a few people have asked me when I will actually go in for the transplant. The short answer is that I don’t know yet but anticipate it being the second to third week of October. I will have to do another bone marrow biopsy first and this won’t be scheduled until my platelets are at 100,000. This could be as early as next week or it may take some time. According to the protocol I am on, I will go in for transplant 2-4 weeks following the biopsy. At this rate, I will probably will end up being home for a total of 3-4 weeks before being re-admitted.

I truly am savoring every minute of my time at home. In between the mundane (but currently very appreciated) day to day tasks, I have been doing lots of baking, cooking and reorganizing. I’m setting up a space for Ty to do art, I made Kieran’s room more “2-year old friendly” and I am plowing through new recipes. Of course I am also soaking up every hug, laugh and cry from the kids. Being here to comfort them when they wake in the middle of the night or pick them up from school is all of the healing power I need. I don’t think I ever realized how much being a mother meant to me. I can see now that it means almost everything. There are a million things I want to do for myself on the other side of this but I am grateful for having my family to pull me through right now.

Before I go, I want to thank all of the people who have been sending me comments recently. It’s funny to think I am inspiring anyone when there are days I have to literally talk myself through this. I appreciate all of you saying that. I also want to thank Kim for the suggestion of turning this blog into a book one day. That has certainly crossed my mind. I even had a fantasy of sitting on Oprah’s couch talking about it, but darn it, Oprah had to go and end her show! Oh well, there’s always Good Morning America?!?! In all seriousness, if I’m making a difference in anyone else’s life besides my own while I go through this or beyond, then that is only more for me to be grateful for and certainly part of a beautiful gift in this really ugly package.

Day 108


Today was a long, but good day. I had to go back to the hospital for a routine follow up appointment with my doctor and I ended up waiting 4 hours! The appointment went well. I go back next week for blood checks and a few more tests in preparation for the bone marrow transplant. Coming home to the kids after the day was simply awesome.

I’m definitely struggling with anxiety over getting sick or running fevers again. Everything is normal right now but I must have washed and sanitized my hands about 1,000 times today. I couldn’t fall asleep last night because I was so wound up. Tonight I hope to get a good night’s rest and am looking forward to NOT being at the hospital tomorrow for the first time in over a month – knocking-on-wood that I have no reason to go. I actually plan to do the simple things tomorrow like grocery shopping, a little exercise, dishes and laundry. It may sound strange but when the routine, day-to-day things are taken away from you, there is nothing more comforting than getting them back.

I feel like I have a timer ticking down and I’m trying to savor every minute of every day before it slips away. Part of it is knowing I have to go back to the hospital, part of it is fear of what the future holds. In any case, when you go through some of the things I’ve been through and what’s ahead, everything else seems so easy. Things that would have bothered me months ago like a kid drawing on the wall or traffic or even financial issues mean nothing to me now. I am beginning to more clearly see the “gift” that comes with this type of journey. When you put aside the anxiety, there is a level of peace about my life that I don’t know I would have ever been capable of achieving before this. I would never wish this on anyone, but I hope that if I can inspire any of you to do anything, it is to stop when you are stressed and it feels like you will lose your mind, take a deep breath and remember how lucky we are to have the things we do. In the end, so many of the things we stress about mean so little.

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