Notes From Supergirl

My Diary from the Trenches

Day 364


Tomorrow is the day – Day 365 – the one year anniversary of the day this all began. Is anyone still reading this 364 days later?!?!?! I know a few of you are ;) So for those who have trudged along all the good days and bad this past year, an enormous thank you. It’s overwhelming to think of all of the changes that have happened this past year. It’s also strange to have been telling people recently how grateful I am to be where I am today and knowing I could have never gotten here without the challenges I had to go through.

This weekend I went to my family’s vacation place and rode bikes with my 6-year old son riding next to me. I was practically in tears of joy the whole time because a) I was so proud that he was riding his bike so well; b) he was riding through the same trails that I rode as a kid and my mother as a child before me; and c) that I am alive and healthy and riding next to him. I have had many moments like that recently. As I approach this month of anniversaries – first the start of treatment and second my one year in remission – I have been intensely emotional about the fact that I am here today. I went bathing suit shopping today and came home with 5 suits (who needs 5 suits?!?!?!) because I thought to myself, “I WILL NOT be in a hospital bed this summer! I will be home in my pool or at the beach or on vacation with my family. I am free.”

There is a large part of me that still carries that sense of freedom, or escape I should say, from not being in the hospital anymore. My experience at University of Maryland has been nothing but wonderful in so many ways, yet I treasure every moment that I am not in a hospital bed. As this day has been approaching, there is a lingering thought in the back of my mind that someone might kidnap me tomorrow and put me back in the hospital! It’s ridiculous, I know. But that lingering fear also gives me the courage to do as much as I can each day to assure that I don’t miss anything … just in case. That’s a good thing.

So what has changed, besides the obvious, in the past year?

  1. I’m a pseudo-vegetarian. Some would call me a “flexitarian” or a “transitioner.” I think it’s best to just say I eat a mostly vegetarian diet with occasional exceptions for fish and bacon.
  2. I regularly run 3-6 miles a week which I have never done before in my life.
  3. I no longer worry about most things.
  4. I know now who is willing to stick by me through thick and thin, hair or no hair. Some of these people I never doubted, others have surprised me.
  5. At 35, I have the same haircut as my mother and it kills me that she can’t see it but I know she would love it.
  6. While I have changed in many ways, there are some things that will never change, for better or worse.
  7. Also at 35 I have faced the greatest fear I’ve ever had – and I’m still alive and kicking. Everything else doesn’t seem so scary anymore.
  8. When I stop thinking about things so much and just do them, I never regret it.
  9. I will endure anything to be here for my children.
  10. I am a cancer warrior.

So, the story doesn’t end here. I plan to continue writing the blog at least until I finish chemo. I’m in a phase now where I’m thinking about what I can do from this point forward to help other people going through this. I have taken a lot of time to focus on me, my health and my happiness. Although I know that’s important to continue doing, I want to pay something forward. I have been blessed to have so many incredible people support me through this and I want to be able to do the same for someone else. I believe I was a given a second chance for a reason and I don’t ever want to forget that.

Day 345


The great news is that my biopsy results came back clean – I am still in remission. The other news (it’s not bad news, just not good necessarily) is that my platelets were 74,000 on Monday instead of the 75,000 they needed to be to do my next round of chemo. It doesn’t mean anything other than that is what the measurement was at that particular time of the day. They said they could have tested me an hour later or put a different sample through the machine and my platelets could have been 80,000. In any case, they had to delay my chemo until next week. Hopefully the numbers are where they need to be to stay on track.

You would think that the results of the biopsy would have put me in a great mood this week but instead I’ve been stuck in a not-so-great funk. I was really disappointed about not getting to do my chemo. I also saw a woman at the hospital on Monday who was in the transplant unit the same time that I was. She wasn’t a friendly person but the one time I spoke to her she said something about being on her third transplant because the first two hadn’t worked. I’ve seen her many times at the hospital since leaving in October and she has looked progressively worse. When I saw her on Monday, it was almost frightening. She hardly looked human. Her body was nothing but bones, her skin ashen and gray. It was also incredibly sad. It’s hard for me to write about. It’s hard to see someone so sick, so close to dying and to know that for whatever reason, it went one way for me (so far) and the other way for her. I could be her, she could be me – what’s fair about any of that?

I know I can’t get caught up in the mind games and the downward spiral of thinking about all of that. I feel sad for her, so sad, and yet, selfishly, it made me feel so sad for me. I think that’s the root of the funk. I should be grateful to all that be for the fact that I am here and full of life right now, but instead it brought me face to face with the reality of cancer. I suppose I try to ignore that most of the time. And so, the negative energy of Monday has carried throughout the week and has led to one bad thought after another. Never a good thing. On the one hand, I am making incredible strides physically and on the other hand, I’m getting swept away with superficial negativity about my hair or the loss of my normalcy. I know this is all selfish and petty. I haven’t lost site of the things I am grateful for, I never will. But occasionally I just wish I didn’t have to think about this or live with this. I wish a bad hair day could just be the worst part of the day and not issues about my mortality.

As you can see, I really am in a funk. So I’ve made it a point this week to try to get out every day and do something with my friends and/or the kids. I’ve also rearranged my schedule to accommodate running and yoga and workouts and, fortunately, I’ve still found time to work and be productive. I’ll be fine. I think I have to accept the fact that sometimes SuperGirl doesn’t always feel like SuperGirl and that’s okay.

Oh, and before I run I must thank all of you who emailed me about my last blog post. There were many of you who didn’t want to comment on here and I wish you would have because the comments were hilarious and insightful. I won’t mention any names to protect everyone’s privacy but one of you uplifted me greatly by pointing out that I might not have healed as quickly as I did were it not for my healthy lifestyle. I like that point and I certainly hope it continues to work for me. Many of you also agreed with my sentiments after facing similar personal situations. But among my favorite comments is this quote from a great friend:

“I didn’t think it sounded negative at all, just mostly true. But I did want to point out that the people who are sitting around eating scrapple and pizza probably aren’t as happy/content as you’d think. At this point in my life I am learning that mental happiness and physical health pretty much are one in the same…those of us who are not physically what we want to be are mostly just expressing our mental instability around our waistlines!”

You know who you are ;) It made me laugh and it may be true. But just remember that not all the skinny girls are happy all the time either. We’re just running away from our problems – literally! – a little bit faster than some others may be.

And just to ramble for another minute, this also reminds me that this past Sunday morning, the morning news show did a feature about happiness. They spoke with Happiness Project author Gretchen Ruben. The overwhelming conclusion to the piece was that the one thing in life that has the greatest impact on our happiness is our relationship with others. What I can say for sure is that despite this bump in the road, I have never been happier and that is because I have never felt so much love, inspiration, calm and comfort from the people I have around me. So to my friends and family, I love you all and am so, so grateful to have you.

Wow, good thing I kept talking, I feel better already! :)

Day 340


Okay, warning, this post may be a little negative but I have been pondering something all morning and felt compelled to write about it. I was making breakfast for my family and, as usual, I had a bowl of healthy, high protein, high fiber, all natural cereal and I was thinking about the breakfast that another member of my family would probably have. He will prepare a breakfast sandwich with processed, high-fat meat made from unidentifiable animal parts topped with a greasy egg, cheese and a buttered muffin. Honestly, I’m fine with the fact that he will eat that and I have no desire to eat it myself, but I was thinking about how normal his body is compared to mine and how long he will probably live. It led me down a long spiral thinking about all of the people I have met throughout the past year who have been diagnosed with cancer or other diseases and how every one of them (all young adults) are all the epitome of health. They were all avid exercisers and healthy eaters, young and active. Yet they were the ones struck by cancer. I have yet to see one young person in the cancer center who is obese or looks like someone who spends too much time at McDonalds and not enough time on the treadmill. Maybe it is a result of seeking out others like me to try to relate to, but when I think about all of the people in my life it seems a little too coincidental that the people who have been afflicted by cancer or disease are the healthiest people I know. A good friend of mine has been struggling for two years to find a diagnosis for what may turn out to be an autoimmune issue. She, like me, has always exercised, doesn’t use toxins in her home and eats organic food. My mother was active and ate a healthy diet and didn’t have much stress going on in her life. However, I have friends and relatives who have smoked their whole lives, eaten foods drenched in fats and oils, hardly exercised and even indulged in more than their fair share of drugs and alcohol. Yes, running a 5K might give them a heart attack but so long as they continue to sit on the couch, they will probably live there comfortably well into their senior years.

I guess what I’m wondering is if this is simply all genetic and those of us who are born with a flaw will have to spend our lives fighting to stay alive in lieu of an error in our biology. And, in the end, does none of what we do matter except what science discovers in due time to ultimately fix our genes? Or, is there something about our quest to be healthy that makes our body a better host for disease? Perhaps the poisons that others are indulging in are actually protecting them having the bad cells grow there? If you were cancer, would you rather live in a stable environment in which you could flourish or a toxic dump in which new materials are constantly added that may or may not work against you? And what about obesity? Maybe having low body-fat is actually a bad thing? Maybe it makes us more susceptible? Think about Lance Armstrong and then think about all of the out-of-shape, obese people in Hollywood (Marlon Brando, for one) who were just fine.

I’m not trying to be a downer or suggest that I’m giving up hope. I’m just pondering these things. I will most likely run a 5-K in August and another 6 miles in October because a) it feels good; and b) I’m trying to prove that I will not let cancer take me down. There are thousands of us who walk and run and bike and swim each year in races all across the country in order to prove these things. We will also eat our insanely healthy diets, meditate and do all of the other things that make us feel we are somehow keeping the cells in our body in their best condition. And sadly, I now look at so many of the people who do this with us as prime candidates for cancer themselves, where I see the people savoring their bacon, their beer and their couch as the ones that will outlive us. This is why I’ll never tell anyone to become a vegetarian or take up running. I will tell you take up yoga because of the impact it has had on my life for the past ten years, but as for the others, they work for me but they obviously haven’t kept me healthy.

In other news, my biopsy went as well as one could go on Thursday. I will have the results on Monday, along with starting round 4 of the trial. Today, I’m off to run to prep for my races. I’ll feel better, stronger and more accomplished when I get home and I guess that’s the best that I can hope for.

Day 335


I know, it’s been quite a long time since I’ve written. As usual, that’s good news because it means I’m busy living life. I am on week 6 of my third round of the clinical trial and I have a bone marrow biopsy on Thursday. This will be the first one since November. I know that everything should be fine, but I’m still a little nervous. My body has responded well to this round of the trial. My last blood check showed my platelets over 110,000! My white count should be coming up this week. I tend to be neutropenic the 4th week of the trial and by the start of the 7th week, it is closer to normal. The count continues to come up the week that they are giving me chemo and then starts dropping again around week 3. Next week I should have chemo again, which will be the start of round 4 and officially the half-way mark! Only 4 cycles left after that.

I have been feeling pretty great overall. Most importantly, aside from my hair (which I hate!) I feel NORMAL. I have been running 2-3 miles twice a week, weight training and doing hot yoga. Things that were challenging a few weeks ago feel fluid and easier now. I still have energy lulls on the first and second week following chemo, but I feel like my body is starting to adjust to it. Mentally, I am starting to have more days that I don’t think about cancer than days that I do. Every once in a while I read an article or see a news story that reminds me how serious it is and about the fact that it can come back. I try to avoid those things, but I also know that everyone is different and I try to remain focused on the other things I plan to do with my life besides face cancer.

I actually read an incredible article today about a doctor who has virtually found a cure for another type of leukemia called CML (I have AML). CML stands for Chronic Myeloid Leukemia, where I have (had) the Acute form. In this case, the doctor was able to identify the actual genes that cause CML and develop a medicine (literally in pill form) that ultimately deleted the genes from the body so that they could no longer produce the cancerous cells that caused the disease. Like I said, the only way to describe it is “incredible.” They give the example of people being diagnosed in their 60s, now living into their 90s and dying of other issues, not the leukemia. I would happily take 30 more years of life, but hopefully much longer!!! The article is very long but worth reading if any of this is of interest to you or you know anyone affected by leukemia: This doctor is beginning to do research to try to treat AML in the same way. I can only pray that they find a cure like this should this ever affect me in the future.

So, as you can see, reading a story like this gives me great hope but once in a while a get nervous about the idea of this suddenly coming back without warning, much the way it showed up. Although I have always considered myself a healthy person, I can also see now how unhealthy I was in so many ways before all of this. I only hope that the daily changes I work on now are what it takes to keep this away forever. I hope this doesn’t sound negative, it’s just the reality of living with the disease. It is always tucked away in the back of your mind and the trick is to keep it there.