Notes From Supergirl

My Diary from the Trenches

Day 92


I was disappointed to hear this morning that my blood count is the same as yesterday. I was really hoping that my counts would come up today but I know that this is all normal. I’m just getting very eager to get home. Today is the 31st of August and I have spent most of the summer in the hospital. It is a small sacrifice to pay to live a longer, healthy life and be there for my kids, but in the present moment I just miss my kids and want to see them so badly.

On my agenda for the day are a red blood transfusion and a platelet transfusion. I haven’t had a platelet transfusion since the first time I was in for chemo and I had a lot of issues at that time. I’m a little nervous about the transfusion today but I’ll keep my fingers-crossed. Melly is also coming for a visit and I’m looking forward to her always uplifting chats.

I think I’m just stuck in this lull. I’m waiting for my counts to come up, I’m bored and sick of the hospital, I’m missing my kids, my husband and my house, and I’m disappointed about the vacations I’ve missed this summer. I guess I’m feeling pretty down but I know it’s not that long until I go home. I’m trying to focus on that.

Day 91


Things are going well (knock-on-wood!!!). My counts started coming up today and I expect it will take about a week for them to completely recover. Overall I feel pretty good. Of course I still have my fevers but the doctors are doing the best they can to try to make me comfortable, like trying to figure out a schedule for Tylenol that may help prevent me from having to go from chills to sweats. The nausea (again, big knock-on-wood!) also might be getting a little better. We made a change in one of my medications and that may have been the key. Regardless, I’ve been able to eat my three solid meals a day so that’s the important part.

Brian came down on Saturday night and watched the Raven’s game with me. Last night Holly stopped by for a visit and my Dad is coming today. I don’t have much else to report right now.

Day 89


My blood counts bottomed out today, which is good. It means that they will be working their way up from this point forward. However, this is the point where I get really nervous because this is the point during my first chemo that I ended up with the stomach infection and then, later, the liver infection. So far I feel okay, but I am having some pain in my liver and I’m hoping that doesn’t mean anything. I’m also running fevers most of the day. We can only assume it’s from the infection but I’m on all kinds of antibiotics to cover any other possibilities. The doctor also thinks that one of the meds I’m on for the infection could be causing my fevers so we’re switching to a new med tonight to see if that makes any difference.  The problem with the fevers is that sometimes they’re coming more frequently than I’m allowed to have Tylenol (every 6 hours) so I’m having to sort of suffer through them until I can take the next dose.

I missed Ty’s soccer game today but I’m proud to report he scored to the first goal! He also played goalie most of the time he was in there and he did great. My dad sent me pictures and Brian’s coming down tonight and bringing video. I’m so proud of him.

Robyn came down for a visit today and brought be some fun books to read and stuff to paint my toe nails. I’m very grateful for both and, as always, the great conversation. Brian’s coming down tonight to watch the Raven’s game with me. I haven’t seen him in a while so I’m looking forward to it. So since the game just started, I’m going to run!

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Day 88


Well there’s been a change in plans. My blood counts this morning showed that my white blood cells were down to 1,200 from 5,000 yesterday. That means that I should be neutropenic by tomorrow morning. So I’m staying. I’m disappointed to miss Ty’s game but I’m also happy that I am closer to “bottoming out” which means I have a greater chance of recovering faster. I’m hoping to be home in a week or two at the latest. But this way they can monitor my fevers, get me on some antibiotics and try to prevent some of the nasty side effects I had last time. So far, even with the nausea, I’ve been able to stomach 3 full meals a day. I am determined to get some weight back on before the bone marrow transplant.

So I’ll be here for a while if anyone wants to come and visit. With my half-inch of fuzz on my head, I swear I feel like a Dr. Seuss character. Isn’t that worth seeing?

Day 87


Well the plan is for me to go home tomorrow and then come back to the hospital on Sunday for a blood check. I will be allowed to stay at home as long as I am not neutropenic, but as soon as I am I will be re-admitted. Without going into a lengthy explanation, neutropenia is when your neutrophils (the immune-fighting part of your white blood cell count) drop below 1,000. Right now mine are at 5,000. I should be fine through the weekend but because of my liver infection, they will want to re-admit me to keep an eye on the fevers and get me onto antibiotics to try to assure that I don’t pick up any other infections while I am waiting for counts to recover. So why go home for such a short visit? To see the kids and Brian and to see Ty’s very first soccer game on Saturday. Once I come back to the hospital I could be in for another week or two. The doctors don’t want to keep me here for no reason and I wouldn’t mind having a day or two to organize their things for school since I might not be there when they start.

I’m feeling pretty good. My energy is starting to lag, but that’s to be expected. With lots of meds we’re keeping my nausea under control and I’ve been able to eat a lot more. I’m trying to stay as healthy as possible this time. I’m still able to do my laps around the hospital – I’m just a little slower and not doing quite as many steps at one time.

I’m actually really excited to be in this spot. I’ve officially finished 2 out of my 3 my chemo treatments and I am just a couple of weeks away from starting the bone marrow transplant and finishing my treatment. I know it won’t all be smooth sailing – trust me, if anyone knows that it’s me! But I’m hoping that the strength I feel inside will carry me through the next few weeks with relatively few (if any) complications.

My current goal is to have my counts back to normal on or before Labor Day. It’s cutting it very close because it takes a certain number of days, typically, for your blood counts to recover. But Kieran starts his first day of school the day after Labor Day and I am determined to be there. I will be disappointed if I don’t make it but I won’t let it break me. I’ve just been fortunate enough so far to be home for everyone’s birthdays and lots of firsts, like Ty’s soccer game this Saturday. These things may not mean much to most people, but to a mother they mean everything.

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