Notes From Supergirl

My Diary from the Trenches

Day 423


This week has been pretty rough so far. I went for bloodwork yesterday and I am at the bottom as far as my platelet count – all to be expected. But I have been feeling pretty awful. Lots of light-headedness, fatigue, some nauseau and overall almost no energy. I suppose this is just the effect of the chemo and where my blood counts are but I haven’t felt this bad in a while, so it feels particularly awful. I spoke to the doctor about it and she didn’t seem very concerned. She said it is a result of my low blood pressure (normal for me), still being anemic, where my counts are and the heat. I am trying to accept that answer although I have had some periods of high anxiety and there is a fuzzy line between what is real and what is produced by stressing about it. As I told my friend, I thought I was over all of this by now. I thought I was better equipped to let these bumps in the road roll off my back, but they still stress me out.

I’ve been hearing a lot about cancer lately. The nine-year old niece of one of Brian’s co-workers was just diagnosed with a form of leukemia and facing a really rough fight so far. At an appointment the other day, a woman was telling me about another lady that worked downstairs and is going through the same course of treatment I did last year. And then this morning I opened an email only to learn that someone I had read about in January – a true cancer warrior – passed away yesterday.

I have been doing all of this “soul-searching” and coming to terms with the idea that we all have our place and purpose and that worrying about any of it is wasting time. In that regard, I have dramatically improved over my past experiences. Although I get anxious or worried or flat-out afraid sometimes, I can much more quickly let it go. I think that having been reminded of cancer so much in the past two weeks, as well as knowing that I have another biopsy coming up, all of a sudden I am focused on cancer again. I don’t think I live in denial about it, but I live as if I am alive and cancer-free and have the rest of my life in front of me. But I still hesitate making commitments to go places or do things because I don’t want to let other people down just in case I might find myself back in a hospital bed. I think I try so much to avoid the fearful thoughts that I do drift into denial and I know that’s not healthy either. As I described in a much earlier post, in meditation I have learned that when thoughts cross our mind, we must acknowledge they are there and then let them pass. Trying to fight against them only makes them worse. So today, I embrace the fact that I hate feeling sick and run-down and it scares me, but I will not dwell on it. I did more today than I did yesterday and hopefully tomorrow is a little better as well.

Day 415


I ran the entire Iron Girl course yesterday, wahoo! It’s the same distance I have been running regularly at home, but it always feels longer and unfamiliar. I was running with two Iron Man Triathletes, Roseann and Kim, and they kept me on pace which helped immensely. Last time I charged off the starting point and ran my first mile in record time for me (post-chemo), but then was completely wiped out by the time I hit the last hill. Yesterday was slow and steady. It’s going to be brutal with the heat on race day, but I’m hoping I’ll just be able to get in my zone and enjoy that I’m there.

In other exciting news, my little one is doing incredibly well with potty training. It happened virtually over night and I couldn’t be more thrilled. Both of my boys have grown and matured immensely this summer. As I always say, I am savoring every moment.

I am enjoying a really long break from the hospital as well. I had chemo two weeks ago and I don’t have to go back until next Monday. It feels like such freedom I have almost had to pinch myself. When I think that there is a time in the not too distant future that I won’t have to go to the hospital every week, I float between elation and fear. I am focusing on the positive and remaining incredibly optimistic about my future, but there is this fog I have been swimming in that might soon be lifted and it feels surreal. I know I have used that word many times — “surreal.” Surreal to have had cancer, surreal not to have it.

The weird part for me now is making plans for the future. I’ve been doing lots of that  – taking on more responsibilities for work and my kids’ schools, planning vacations, etc. I’m going about it with so much enthusiasm to do it all, but also with the occasional voice in the back of my head whispering, “what if it comes back?” The good news is that I am very adept at silencing it and moving on,where a year ago I would have simmered a while in the anxiety of it all. I kind of enjoy responding to the voice and saying things like, “I have a 60% chance of not facing this again for at least 5 years, so bother me again later!” When I was getting chemo last time my nurse told me about a woman who was over 30 years in remission from AML. That means she was treated long before stem cell transplants or even donor transplants. She withstood old, nasty chemo and has lived this long. Once I heard that, I told her that was going to be me, except that I will live at least 50 more years. Can you even imagine 50 more years??? If I were to live as long as my grandmother has so far, I have 58 years to go. If that’s my plan, I guess I better stop wasting any time worrying ;)

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Day 406


I finished round 5 yesterday – three rounds to go! Although they told me that my body would adjust to the chemo after a few rounds, I feel like the immediate symptoms, those that occur on the days I get chemo, are getting worse. I am physically exhausted after the injections. It feels like someone gave me a couple of Benedryl. I also get that skin-crawling, agitated feeling which leads me to be very short with the kids and have a very low tolerance for much of anything. I suppose that could just be a result of the fatigue as well. But today I feel completely normal again. I wonder if it’s the fact that my body has healed in so many ways that when I do have the medicine pumped into me, I am noticing the side-effects so much more than I would have a couple of months ago? It makes no difference because the most important thing is that I bounce back fairly quickly and get back to my day to day routine.

Although the waiting room game was beyond ridiculous this past week, once I was parked in the chemo chair I was actually relaxed. I am savoring a book that a friend gave me during a hospital visit. It was a gift from a former AML patient who I connected with through this experience and it has taken me all of these months to finally sit down and read it. Now that both of my kids are comfortable in the pool, yesterday I was able to actually sit quietly by the pool and read for most of the afternoon while they played. That was a miracle that did not go unnoticed! Life is good right now and I couldn’t be more grateful.

Now that we are settled into summer, vacation is over and the kids are in camp, I’m finding a lot of time to contemplate my future – and I do not mean medically speaking! I am going with the assumption that I will be here and doing fine, so the questions I am considering are what I want to do with my career and my hobbies and what passions I want to pursue. I will most likely start yoga teacher training in February but I plan to continue working in design and web development while I do that. I’m also considering writing a book based on this blog and thinking about more ways I can get involved with helping young adult cancer patients. I want, more than anything, to be able to give something back to those who have helped me and help those who have this experience ahead of them. The book idea is often on my mind. I love writing and I think I have envisioned writing a book since I was a kid, but the thought of actually doing it seems overwhelming. I’m also not sure that I want to share that much of myself with the world, considering I am an intensely private person. Nor am I sure that the world would care that much to read about it! I don’t mean that as a self-degrading comment, but in all seriousness, when considering how much energy I might put into a project like that, I have to consider the reality of how interesting my experience really is to a larger audience. It also feels self-promoting in a way I’m not comfortable with. I am sharing my story here because I know a lot of you are still reading and curious to know what is happening with me. And also because I want to have a journal of this part of my life for my children to have one day. In writing a book based on all of this, my goal would be to share the ups and downs of this journey with other patients and let them know that cancer doesn’t have to be a horrible omen.

So time will tell. In the meantime, I’m still working on my own Happiness Project with a great group of friends and enjoying as many moments as possible. If you haven’t read the Happiness Project yet, please put it on your summer reading list!

Day 400


I have been thinking about writing for a few days now, but when I sat down to write this morning I didn’t realize I haven’t written anything at all since May! There have been a few times I have avoided writing because I felt like I had only the same things to say, but I apologize for having virtually disappeared.

The month of June was ridiculously busy. Both of my kids were out of school and it left me little to no time to work, write or do much of anything else. I am incredibly grateful to my sister-in-law Stephanie for babysitting for me each week so that I could keep up my yoga practice. My dad also picked up a day for which I am grateful. It helped me to remain sane! Aside from yoga, my other activity was weekly hospital visits for count checks. The hospital seems to be a busy place during the summer. Thank you to Mike and Peggy for hanging out with the kids at 8 am so that I could do that.

I have also been continuing to train for the Iron Girl relay in August. One of the board members from the Ulman Fund, Kim, offered to run the course with me and we got to finally do that a couple of weeks ago. The course is 3.5 miles and very hilly. Although the hills I run at my house are taller and longer, they are broken up a little differently. The Iron Girl course was definitely challenging and I was disappointed to have to stop and walk the last hill. However, the reason for my feeling wiped out by then was because I ran the first mile in 9:51, surpassing my goal of running a mile in under 10 minutes! I was so busy talking with Kim and enjoying the scenery I wasn’t paying attention to what I was doing. I’m thrilled to have reached that goal but now know to pace myself better so that I finish the run with the energy I need. I look forward to running the course again with Kim, and hopefully Roseann as well, over the next few weeks.

In more Iron Girl news, I also designed a new logo for Team Inspiration in partnership with Roseann’s son and the logo will debut on the team jersey that we run in on race day. I am so excited that I also got to design that. It really feels like one of the coolest things I have ever had a chance to work on and I can’t wait to see what they look like.

Exercise and bloodwork aside, I finally made it on a real vacation to the beach!!! I just returned from a week in the Outer Banks with my entire family and it was nothing short of amazing. Beautiful weather, lots of great activities and down time, lots of wine and huge strides for both of my kids. Ty learned to swim which led to body surfing in a matter of days. Kieran also did some swimming in a life jacket and was thrilled to “ride” the waves with mommy or daddy holding him. Lots of great memories with my cousins. I am so happy that they all went along with my idea and made it down there.

I start round five of chemo on Thursday this week. Overall I have been feeling good. While I am looking forward to getting through another round, the weekly visits to the hospital are wearing on me. There was one day I miraculously got in and out of a bloodcheck in 55 minutes! However, the next week made up for it as I had to wait over 3 hours to get my results. An hour to get there and an hour back and that’s the entire day gone to simply get a number on a paper. It’s not a complaint, this is just my job now. I just look forward to the day that I don’t have to go to the hospital every week and that I might be able to have a regular job where I get to make money and do something I like instead of sitting in a waiting room. One day.

Oh, I guess I should mention it is also July 4th and Day 400! I remember July 4th last year so clearly. I was home but it wasn’t a good place for me. I was in the heat of the liver infection, literally and figuratively. This year I have an ear ache from a sinus issue, but I’ll take that any day over a liver infection! Most importantly, I’m home and will be doing what everyone else is doing today, barbecuing and watching fireworks and I couldn’t be happier to be so ordinary! I hope everyone has a great holiday and I promise to be posting again soon.