Notes From Supergirl

My Diary from the Trenches

Day 452

August25

So, as most of you know, I ran IronGirl on Sunday!!!! It was pretty amazing. Overall, I just had so much fun. The experience of being part of a triathlon was completely new to me and I am hooked. I cannot wait to do it again and I really look forward to doing the whole thing (run, bike, swim) at some point in the near future.

There are so many highlights from the day I wouldn’t even know where to begin. Rather than try to write these out eloquently, I thought I would just list them. So here goes:

1. At 9:30, shortly before I was ready to start my run, I looked over and saw Brian and the boys standing at the starting line. I wasn’t even sure I would see them until it was all over and I was just elated that they got to see me start and finish.

2. I was on a relay team with two other girls that I didn’t know but one of them had to drop out 2 days before the event. They wouldn’t let Roseann substitute another biker on such short notice so she ended up biking for our team. Since she wasn’t scheduled to run at all, she decided to run with me! We crossed the finish line together and to have her there with me after all we’ve been through was just perfect.

3. I was surrounded by new friends I’ve made over the past year who have inspired and encouraged me in ways I could have never imagined.

4. I got to design a new logo for Team Inspiration (Roseann’s team) and our team of around 30 women were all wearing the new logo on jerseys I designed as well. Pretty cool to see your artwork running around all over the place :)

5. Crossing the finish line and knowing I fulfilled a goal I set for myself and didn’t let anything stop me.

6. Knowing this is only the beginning!

That sums it up as does this …

Monday morning I went to the hospital bright and early and started round 6 ( of 8 ) of my maintenance chemo. In 3-4 weeks I should have my next bone marrow biopsy. Today I went out for a run and ran the fastest I’ve run yet. I feel like I’ve crossed some imaginary threshold. Maybe it’s knowing that I only have 2 treatments left, or maybe it’s proving to myself that I am very much alive and well. Either way, I feel revitalized.

I have lots more to talk about it but not enough time to do it right now. But before I go, I want to thank my mother-in-law for staying and watching the kids this week while I did chemo. It was an enormous help and truly appreciated.

Day 438

August11

For my weekly update I have good news to report – my temperatures dropped back to normal over the weekend! In retrospect I spent a week dealing with a decent amount of anxiety over nothing, but I suppose it makes me savor my normality even more now. The doctor said that the temps were likely due to my white counts dropping. That can happen, she said. Ironically, when I was in the hospital last year, I would have low grade temps when my counts were going up (the exact opposite). But my platelets also took a huge boost up to 140,000 which is close to, if not the highest, they have been since prior to diagnosis. Their production in my bone marrow may have also contributed to the temps. My body was just very busy going up and down last week.

This week things are much better. On Monday I was thrilled to see the high platelet count along with my red blood count back to normal, which explains why the fatigue has also improved. I’ve gotten back to running, yoga and weights which has helped to make me feel a little bit more alive and healthy. Next week I have the Iron Girl race and I couldn’t be more excited that I am feeling well enough to get ready for that.

When I started running temps two weeks ago, I implemented a new rule for myself. Very simply, I will not panic over something unless it exists as a symptom for more than 7 days. The temps went away on day 6! This is the way I’m learning to cope with everything. I’m also learning how much our bodies can go through and the power they have to heal if we just give them time.

So that’s my report for today. I’m off to enjoy this amazing weather. I hope all of you are finding time to enjoy these last few weeks of summer.

Day 430

August3

I just wanted to give an update since last week. I went to the hospital Monday and my counts are doing what they’re supposed to do so the doctor didn’t seem concerned about any of the other issues I am having. As far as all of the nausea, she gave me something for that which has helped a little. It’s definitely made it better but I’m still having issues with it. The other thing that has been going on is that my temperature is running a little higher than normal. I’ve had temperatures in the 99s for two weeks now, mixed with normal temps. In hospital terms, they don’t care about that until you go over 100.4. So again, the doctor wasn’t concerned but it is really bothering me. After seeing that my other counts were normal on Monday, I am relieved, but the temperatures bother me for obvious reasons – horrible flashbacks of the liver infection.

I have a routine biopsy in two weeks and I am actually looking forward to it. I’m settling in to living with the anxiety at this point, something I must get used to. I think the hardest thing is needing the constant reassurance.

I wish I had more to report. I appreciate all of the encouragement and I love the football metaphors. I’m still very much in this game and doing the best I can.