Notes From Supergirl

My Diary from the Trenches

Day 213


Here’s a quick little update. I went to the hospital yesterday for a bloodcheck, expecting things to be on their way up, and found out that my white count was even lower! It was down to 0.7 and neutrophils had dropped. On the bright side, my platelets had gone up 10,000 on their own and my red counts were really good. Everyone told me this is normal, not to worry and that I should be fine by Monday. In the meantime, it completely detoured our New Year’s Eve getaway plans and now I’m back to walking around with a mask on. Basically, I can’t leave the house to go anywhere except the hospital until I have an immune system again.

The pain in my right side is pretty severe right now so I’m going in for an MRI today and very eager to get those results. I am hoping that – unlike everything else with me – there is a quick, easy and fixable explanation for all of it.

I really appreciate all of your pep talks recently. This has been really hard. I feel like I’m in the worst part of my treatment all over again and I didn’t expect to be here. Physically, I’m feeling pretty bad and it’s making it really hard for me to mentally get in the game. I just want to be healthy and pain free again. But I know this is temporary and I just have to keep my chin up and get through this. I saw Roseann yesterday who, as always, offered great words of advice. Trisha also helped reassure me that this first part of the study trial is the hardest and that things will get easier.

I’m really disappointed to be missing out on quite a few things over the next few days but I am grateful to be as healthy as I can be right now and home with my family. I hope that I’ll have an opportunity to get out and about in the coming weeks.

Day 210


This month has been full of ups and downs. I was blessed to be home for Christmas and enjoy the day with my family. It was everything I had hoped it would be, especially for the kids. I was sick with a sinus infection but I made it through. I had gone to the hospital the day before for a count check and my counts where all low, as expected, but no transfusions were needed. The day after Christmas (yesterday) I felt horrible, though. I was exhausted beyond belief and spent most of the day sleeping. Thank goodness my in-laws were here to help with the kids. I figured something had to be going on with my counts. When I went to the hospital today, I found out that my white count was at 0.8 and I was completely neutropenic. My platelets and red counts were hanging on but we did a red blood transfusion anyways to try to help with my fatigue and bring my heartrate down. My heartrate, which has been totally normal, was up around 120 today (normally 70-80). So I was sent home on an antibiotic and we will keep our fingers-crossed that it helps keep away any infections and fevers while I get through these next few days. I had a fever last night but it came down on it’s own. I probably should have gone to the hospital. In any case, my temperatures have been okay today so it’s just a matter of hoping they stay that way until my counts come up and I am no longer neutropenic. The doctor said that should come up any day now. I go back on Wednesday and am just praying that they will be on their way up.

I am so grateful that I made it through Christmas, but this trial chemo has ended up being far more challenging than I ever expected. I have had to the go to the hospital every other day for the last 4 weeks and each day comes with the stress of not knowing where my counts will be. I was also told that my counts wouldn’t dip nearly as low as they did on the in-patient chemos and going today and finding out my counts were as low (0.8) was a shock. I honestly thought that my counts would be on their way up. So all in all I have been a nervous, anxious and depressed wreck in the middle of this glorious holiday season. I have been trying to focus on the things I am grateful for but keep finding myself slipping into anger and depression over having to go through all of this. I just want to be normal for a little while, if not forever. I know I will never be “that” normal again, my normal will be a new normal. I also know that this phase I am in, like the ones before, is temporary and in a few weeks I should be back to feeling okay.

I’m not going to lie, I’m in a funk right now and wishing I could be more optimistic and “supergirl-ish,” especially for the holidays. As I said, I am enormously grateful just to be alive and to have had the chance to be home. I guess I just need a break. I want to play with my kids new toys and not spend every day at the hospital or checking my temperature every two hours. I’m jealous of everyone who doesn’t have to wake up and think about these things. But I also know how lucky I am. And, I know that as soon as my counts recover, I am going to do something totally out of character and go on a vacation with no planning whatsoever. The one thing this whole experience has taught me is that life is short and we shouldn’t wait to do the things that really matter to us. Spending some time away from all of this is just what I need right now.

Day 199


It’s weird to think that tomorrow will be 200 days since this whole thing started. I hope that at some point, I will be able to bring a close to this on-going tally of days. For me, that point will be when I am finished with chemo and completely in remission. I am in remission now, just to clarify, but I certainly don’t feel like I am anywhere close to being finished with treatment.

I think I spoke far too quickly in my last post when I said something about things seeming easier. I finished the outpatient chemo last week and on the 4th day of chemo, my platelets had already dropped 20,000.  When I went in for a bloodcheck this Monday, they had dropped 20,000 again and another 20,000 today. As you can imagine, there isn’t much farther for them to go before I reach a critical area of needing platelet transfusions again. Rather than having to go to the hospital once a week, as it was originally explained to me, I now have to go every other day for at least the next two weeks and will most likely be faced with having a transfusion. And we all know that my body does not respond well to platelet transfusions. I don’t even want to discuss the various scenarios or the fact that all of this will be playing out the week of Christmas. I know that I have to take things day by day as none of us know exactly what my body will do. I’ve already had a complete meltdown over the thought of a stay in the hospital over Christmas. But there is no way at all of knowing right now how any of this will play out. I have stayed strong through all of this and I recognize that what is happening right now with my blood counts is temporary. I don’t have leukemia anymore and even if I had to stay in the hospital for a short time again, it is not because of any infections or illness, it is simply to keep me safe. But again, there is as much chance that my platelets will stabilize or even respond well to a transfusion that they will drop, so there is no point dwelling on worst case scenarios. For now I am grateful I will be home to see my kids’ holiday play tomorrow and hopefully do some fun stuff with them over the weekend. I guess this is just a perfect reminder that every single day does matter.

So all of that negative platelet stuff aside, I have been doing really well. I’ve been staying healthy, exercising and putting on weight. I am almost back to my normal weight and my hair is finally starting to grow in. I’ve been doing a lot with the kids and doing a lot to prepare for Christmas. I am in desperate need of a vacation, however. As good as I feel, I am emotionally completely exhausted from this year and physically exhausted from all of the trips to the hospital and all of the day to day things I need to take care of in my life.

In the past week or two, I have thought a lot about my mom and how much I wish she were here right now. The passing of Elizabeth Edwards hit me really hard. She went through a similar battle to what my mom went through. What upset me so much about their situations is that after they were diagnosed with cancer, they spent so many years fighting it only to lose their battle in the end. I have only spent 7 months fighting cancer and I want more than anything just to be able to live my life and put this behind me. I question my decision to do the trial seeing what is happening to me right now. Will I spend another year dealing with chemo for good cause or will it take precious time away from me? I can only pray I am doing the right thing for the long term.

I didn’t mean to jump on here and sound down. I do struggle with the ups and downs of all of this. I struggle with the depression of seeing so many gravely ill patients every time I go to the cancer center and hoping I don’t end up being one of them. I love when people tell me uplifting stories about others who have gone through this and are doing really well right now. I hold onto faith and hope like a beloved security blanket.

As we get closer to Christmas, all I can say is savor these moments. I get so frustrated with people that don’t realize how blessed they are. Just to be able to go to work every day or to take your kids to school and not worry about whether or not you will make it home to get them is a gift. Yes, life gives us enormous stresses sometimes, but to be alive and to be healthy and have those we love around us be healthy and safe too is such a precious gift.

I will keep everyone posted on the platelet situation. Please keep my platelets in your thoughts :) Maybe we can generate some serious platelet producing energy with enough good thoughts!

Day 192


I just finished day 4 (the final day) of my outpatient chemo. This process has been relatively easy – no, I take that back, EXTREMELY easy – compared to what I have been through already. On Monday I had to spend a full day at the hospital getting tests, meeting with the doctor and getting all setup to start the chemo. By day two, I simply had to go in, pop some anti-nausea pills for pre-meds and then get hooked up for an hour to an IV drip. That’s it. The days ran a little bit longer this time through because we were just starting everything, but so long as things stay on course, it does seem like this will be a relatively painless and easy experience (knock-on-wood).

My bloodwork has been good, but of course, the numbers took a little dip today after starting this chemo. It is the doctor’s hope that my counts will not dip too low while on this chemo. If they do, they will cut back the amount of chemo I am given or lengthen the period of time between each round. There are 8 rounds total and I have just completed the first one. My white cells are doing great and my neutrophils are almost 80% so it doesn’t look like I should become neutropenic while on this treatment, but I will be monitored weekly to see how my counts are doing and, again, if anything dips too low, we will make adjustments. The dips, if they occur, are supposed to only last for a couple of days – nothing like what happened on my previous treatments.

I had another CT this week which showed that my liver infection is almost completely gone. I’m still having occasional but consistent pain in my right side with no explanation. Now that we know it is not my liver, the doctor will probably do an MRI to rule out any nerve issues, but then we will most likely conclude that it is a muscle issue. I know it’s not leukemia because my biospy results showed I am completely in remission and I know it’s not my liver – knowing those two things makes me a very happy girl.

So aside from spending everyday at the hospital, my family and I pulled off a big surprise party for my dad’s 70th birthday last weekend. Thank you, thank you, thank you to everyone who helped. I think he really appreciated it and I know everyone had a good time.

Now that chemo is done, I am moving into full Christmas mode. I have lots of fun stuff planned for the coming weeks (and hope my blood counts cooperate). I am also hoping to fit in some work. Oh, and there are a slew of holiday parties that I hope to make an appearance at. Most importantly, I’m trying to just find some time to slow down and enjoy this season with the kids, my friends and family.

On a shallow note, I am thrilled that my eyebrows and lashes are making an appearance this holiday season, wahoo! My hair, on the other hand, seems to be holding out for warmer weather … But to be serious for a moment, going back to the hospital this week, I’ve run into so many people that I’ve crossed paths with during my stays. Some are doing really well, others not so much. As much as I struggle with my own fears, anxieties and even depression over this sometimes, I recognize that – so far – I am one of the lucky ones to be getting through this okay. I feel so much sadness when I see someone in the cancer center with their head in their hands after meeting with a doctor. You know they’ve just been given a difficult diagnosis and I just want to lean over and tell them it will be okay. But all of us have to face our own fights and no two journeys will be the same. I hope that there will be a time I can look back and say, “I did it, I kicked cancer’s ass!,” but until I’m done with chemo and at least a year has passed, I’ll live with some fear and hesitation. In the meantime, I hope that I’ll be able to use this experience to help someone else through, just like so many helped me along the way.