Notes From Supergirl

My Diary from the Trenches

Day 640


I didn’t realize how long it has been since I’ve posted. The last two weeks have been utter craziness and I can hardly find time to get anything done. As far as my health, everything is fine, but I had a sinus issue I just couldn’t shake so I ended up going to an ENT last week. I’m back on another antibiotic, but the good news is that my sinuses didn’t look that bad. The doctor said I was no worse than any other normal patients he sees. I’m finally starting to feel better now. I was having terrible pain in my face and a lot of sensitivity in my teeth. This was all explainable by what my CT showed was going on in my sinuses.

In the midst of all of this, just to add to the excitement, we’ve had to make some adjustments in my youngest son’s school schedule. He is now home with me in the afternoons and I am back to having virtually no time to get anything done. Let me be clear that I am not complaining about him being home (it is what he needs right now), I’m just trying to figure out how to fit more hours in the day. I can’t seem to get out of bed any earlier than 6 and when my babysitter is here in the afternoons, I’m scrambling to get work done before she leaves and we need to start bedtime. By bedtime, I have very little energy left to do much at all.

I think the reason I haven’t blogged in so long is because I didn’t want to sit here and complain about all of this stuff. I’ve been feeling run down and sluggish and dealing with a lot of emotional stuff as I try to keep my children healthy, happy and well-adjusted. I’m also trying to work as much as I can because I love it, but also because there are projects that I feel very committed to and I really want to do them. My blood counts are fine, but nothing to get really excited about right now. Platelets went up but white counts went down. I actually have my biopsy scheduled for next week and I am already a nervous wreck. Everyone is assuming everything will be fine – everyone except me and another close confidant. I’m not assuming anything is wrong, but I’m scared for obvious reasons. I’m not going to focus on what-ifs; I’m going to focus on being positive and optimistic. But I can only imagine that I’ll be a mess next week as I wait for results.

In the meantime I’ve ventured out a little more. You would think it would be good for me, but I know how cautious I need to be about being in public so it has the opposite effect on me. Yesterday I ended up sitting through a pre-school gym class for an hour (I was supposed to just drop him off) and today I broke down and went shopping for costume materials at the craft store. I confessed to my doctor about the gym class and he just shook his head and reminded me that I need to be careful. I was careful, but I fear airborne germs, particularly from children. This week I’m also going to do my first social outing at a friend’s house. I feel much safer about that and I’m really excited to get out of the house.

I’m also tapering down my immune drugs now. It will be interesting to see what happens in the next two weeks because my blood counts could either improve or drop, according to the doctor, and I am also opening the doors for a potential GVHD reaction. But fingers-crossed that counts go up and no GVHD! I really look forward to the days that I don’t have to take 7 or 8 pills twice a day.

Okay, I think I’m going to kick my bottom out the door to run a little because I know I’ll feel better in the end. I bought a pair of hybrid running shoes that are a cross between regular sneakers and the barefoot (with toes) style. The first run was great. The second run on the treadmill was painful. I’m curious if anyone out there has had any experience with barefoot running and has any thoughts on it? I’m not sold on the idea that it is better for me, but I’ve also heard it can take some time to adjust.

More to come soon …

Day 626


Happy Valentine’s Day! Before I get to celebrating with the 5 males in my life (Dad, Brian, Ty, Kieran and Grady) I just wanted to do a little update. I have nothing particularly exciting to report except that I have very clogged sinuses as confirmed by a CT scan today. I actually ended up going down to the hospital over the weekend because I was having horrible sinus pain and running a low-grade fever. The doctor had started me on another antibiotic but then the fever came so that required a double-check in the clinic. They swabbed my nose inside and out and the test results today showed that I have nothing viral, which is great news. I was a little worried about having the flu or something along those lines. Fortunately, it seems that I just have a terrible case of congestion. My doctor actually thinks it could be related to allergies, which I only started to develop in the last couple of years. But with the weather being warmer than usual this year, apparently allergies are striking earlier than usual. The prescription – lots of nasal washing and sprays. Fun stuff. I’m sure you all are thrilled to learn these details.

I’m almost off of the steroids that I started when I had the rash. Just 3 days left. And today my doctor decided to cut down on one of my immune suppressants which I am thrilled about. I have been having a lot of jitters and headaches and this can definitely be related to this particular drug so I am hoping that I will be a little more mellow in the coming days. Of course I am also keeping my fingers-crossed that no rashes or other graft vs. host issues crop up. My counts have also dropped since tapering down the steroids, but the doctor thinks they are close to plateauing. The reduced immune suppression and the approach of my 3-month post-transplant anniversary should mean that the counts will start to come up and stay up very soon. No more bouncing around. I am REALLY looking forward to that!!!

So all in all things are good. I’ve also been making a few more public appearances. I actually went to my younger son’s school for a conference on Friday. I know, of all places to go out in public for the first time! Fortunately for me, I happen to get tested for all kinds of viruses two days later and we now have confirmation that the outing did not make me sick ;) Just for the record I had the sinus problems before I went to school. I’m still being very, very cautious.

In other news, my hair is not really growing yet. I have some very fine, barely visible hairs all around my head, but I don’t really consider it hair growth yet. The immune drugs could actually be preventing my hair from growing more quickly. My doctor said it could take 3 months for it to start growing. Boy do I have high hopes for March – hair growth, a clean biopsy and normal blood counts! Let’s hope it doesn’t disappoint.

Okay, before I sign off you know I have to do one of my lists. In honor of Valentine’s Day I thought it would be appropriate to do a top 10 list of things I love right now. I say “right now” because there are easily 10 things I love all the time but these are the things I have been enjoying lately, along with some perennial favorites.

  1. My family. Goes without saying that all my boys are always at the top of my list and all of them for different reasons. Ty for being Ty, Kieran for being Kieran and Brian for supporting me and putting up with the emotional roller coaster that is me. And of course my Dad and the rest of family near and far. I’m a lucky gal.
  2. My friends. My friends rock! I have had so many awesome visits with new friends and old friends in these last few weeks at home. I am grateful for all of you!
  3. The song “Good Feeling” by Flo Rida. I heard this song for the first time on the day I was driving home from the hospital after finding out that I was at 100% donor cells. It captured the feeling – this unbelievable feeling that I literally had never had before – perfectly. Not only does it get me through my runs and my rides, but when I start to doubt things, I put it on and it reminds me that no matter how I feel that day, my body is doing what it needs to do.
  4. Dark chocolate covered espresso beans. I don’t drink coffee anymore so this has become my caffeine fix.
  5. My personal chef Dawn who does her last day next week :( She’s been awesome.
  6. Meagan, my babysitter, friend and all-around savior. Not only is she amazing with my kids, she’s taken on the task of shopping for my ridiculously specific organic, specialty foods at Wegmans. We are all remaining sane and eating well because of her.
  7. Evernote. My friend Robyn introduced me to the Evernote app a while ago and I am addicted to it now. It is my way of organizing recipes, creative ideas, projects, everything. If you haven’t used it yet, I highly recommend it.
  8. Run Like a Mother. I mentioned it in my last post. Read it and run.
  9. Oprah. I’ve always liked Oprah, but in the last two years I’ve started reading her magazine, watching her shows on OWN and following all this stuff on her website. She never fails to inspire me or introduce me to something new. I know it’s a little cheesy but I can’t help but love what she does.
  10. Living life. I think that covers it!
posted under Part 3 - The Allo-Transplant, The Daily Record | Comments Off

Day 621


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.