Notes From Supergirl

My Diary from the Trenches

Day 621

February9

Well it’s been a busy couple of weeks. I started working again and have gotten more work done in the last week than I probably did in the last 3 months. It’s been good for me to keep busy. Believe it or not, I’m finding it hard to manage my time and get all of the things done that are on my to-do list. And that’s with the help of a babysitter and a chef! I know, pathetic. On the one hand, I feel like I should slow down a little and rest more; on the other hand, I love feeling normal and productive.

As far as my health goes, we are in the process of tapering down my steroids. This has made some things better and some things worse. For a while I was having terrible jitters and feeling overwhelmingly hungry all day long. I had actually dropped a lot of weight in a matter of days because my metabolism was so revved up. I also lost a lot of muscle rather quickly, which my doctor said was also from the steroids. All of that is improving now and the jitters have started to subside a little. But when you go off of steroids, the side effect is fatigue and I am feeling that. I’ve gone from days where I literally didn’t sleep for almost 48 hours to days when I can barely keep my eyes open. On top of that, I now have a cold/sinus problems coming on and it’s all making me feel pretty run down.

Chip commented that the high I was on last week was a new term he coined called a “cytogasm” (a high from my cytology report). Sorry for the “dirty” language ( :) ), but that’s probably a good way to describe it. This week I’m not feeling quite so high about it. For every peak there is a valley. But as my friend Amanda and I were talking about recently, it’s all about how you handle the valleys that counts. My platelets had dropped back down to the 70′s on Monday and, although I know it is fine and means nothing right now, it still felt unsettling. I think that the combination of that drop, the fatigue from the steroids and the sinus issues have triggered this slump. The isolation also gets to me. I drive around to take the kids to school and I want so badly to just run into Rite-Aid and buy a pack of gum! But I know I’m not supposed to. I also know it’s temporary.

The doctor explained to me that the reason it is so important for me to be cautious right now has less to do with my immune system and more to do with the fact that I need to be re-vaccinated for everything. At the 6-month mark, they will vaccinate me for several things using “dead” vaccines. At the one-year mark, they will do the “live” vaccines. So until that 6-12 month point, going to places like my kids’ schools is obviously quite risky, especially given the fact that there are a lot of kids that aren’t vaccinated these days. They were just talking about a recent outbreak of measles at the Superbowl. To someone like me, that could be incredibly dangerous right now. However, my doctor did say that it’s okay to get out a little as long as it’s a relatively safe place to be or not crowded. And I do get outside to exercise as much as possible.

The doctor is planning to start tapering down one of my immune suppressants in a week or two. He did say that I should be able to travel over the summer for the vacation, with some restrictions. So I just need to hold tight, get through this winter and look forward to spring. I’m a little nervous about cutting back on the immune suppressants. Although my rash was determined to be a drug reaction, it coincided with the last time we reduced the dose of the immune drugs and it hasn’t returned since. I did stop one other medication at that time (a prescription antacid) that I haven’t restarted, in case that was what caused the reaction. I also haven’t had any green tea to drink. I’m sure that has absolutely nothing to do with it but it’s kind of like when you get sick one night after eating something and you don’t eat any of those same things for a month because of the memory of getting sick. With this new immune system, there is always a chance I could be allergic to things that never bothered me before. We really have no idea what caused the rash but I would rather not take any chances of having it reappear.

Other things I am up to that I am very excited about … I’m working on the journals that patients will use for Cancer Warrior Walking program with Roseann. Aside from getting to work on the design, I am writing a little piece about my story and how to motivate patients to exercise during cancer treatment. My transplant doctor was telling me the other day how hard it is for him to get most of his patients to exercise because they are tired or feeling down. We were discussing the fact that people don’t realize how much better they would feel if they just did a little bit each day. I’m hoping that I can come up with something inspirational to say that will actually help to encourage people to take a little walk each day. If even one or two people get out of bed and do something, I’ll feel like I helped a little.

I am also looking forward to seeing some friends from Ulman Fund tomorrow and finally getting to meet another young survivor named Jess P. that I have been corresponding with over email/FB. We have lots of mutual friends at Ulman who have shared our stories with each other but she and I have never had a chance to meet in person. She’s an incredibly inspirational person with an amazing story and I’m hoping we can team up and do lots of great things for cancer patients in the future.

Lastly, I have put myself in a light training mode for some upcoming races. I’ve been really inspired by reading a book called Run Like a Mother. It’s written by two moms who have full-time jobs and families to take care of yet find the time to train for half-marathons, marathons, you name it. They offer this really honest, humorous and heart-felt look at what it’s like to be a mom trying to do it all, but how important it is that we give this time to ourselves to do something we’re passionate about. I highly recommend this book to any moms who run or want to run or even exercise on a regular basis. You will be inspired. You will realize why it is that some of us are so addicted and why you’ll want to be too.

I have a couple of other creative projects I’m tackling on the side. My favorite one is a book of lists I’m making. I’m not writing this from scratch but working off of Listography: Your Life in Lists. I’ve had a lot of fun filling out lists about all kinds of things – places I want to go and places I’ve been; favorite songs and movies; roommates; motivations and fears; and everything in between. I also am writing my own list of Jessica’s Golden Rules. I think we should all have our own set of golden rules to guide us. As long as we stick to our own golden rules to guide us, we will always be true to ourselves. All of these lists are works in progress, but written with the idea that I want my children to have these one day. It’s not meant in a morbid way, but meant as a conscious exercise focused on the legacy I want to leave. What is it that you want your children to know about you? My journals are a way of letting them get to know me for who I really am and encouraging them to be always be who they want to be.

Okay, back to the grind. If you have a golden rule you want to share, I would love to hear it! Thus far, mine are not complex, just what I have found to be true. For example, …

Rule #2: Always make your bed. It feels like a burden but only takes a minute and you will always feel better walking into your room with your bed made.

Rule #5: Every bad meal can be fixed with three ingredients: kosher salt, butter and Parmesan cheese.

Profound, I know ;) It’s a work in progress, but it’s honest and practical. When they’re finished and edited I’ll share the final list.

2 Comments to

“Day 621”

  1. Avatar February 9th, 2012 at 12:58 pm John Says:

    You have a personal chef?


  2. Avatar February 9th, 2012 at 5:37 pm Jess Says:

    Yes, sort of. The Ulman Fund gave me the incredibly generous gift of a personal chef for 3 weeks. She comes at the beginning of the week and prepares 5 meals for the week. She has been awesome and everything is tailored towards our tastes and food preferences. Next week is her last week :( But I’ve learned a lot from watching her and a better idea of how I can make meals more efficiently.