Notes From Supergirl

My Diary from the Trenches

Day 299


It’s hard to believe to that tomorrow will be 300 days since I’ve started this whole journey. It is ironic, I suppose, that I discovered this poem today that really captures the essence of the journey our lives are to meant to be. It also speaks to the idea that the darkness that enters our lives is only what we imagine it to be – if we don’t invite it, it can’t exist. I just wanted to share it here and also keep it in a safe place for me to remember:

Ithaka by Constantin Cavafy

As you set out for Ithaka
hope your road is a long one,
full of adventure, full of discovery.
Laistrygonians, Cyclops,
angry Poseidon-don’t be afraid of them:
you’ll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians, Cyclops,
wild Poseidon-you won’t encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.

Hope your road is a long one.
May there be many summer mornings when,
with what pleasure, what joy,
you enter harbors you’re seeing for the first time;
may you stop at Phoenician trading stations
to buy fine things,
mother of pearl and coral, amber and ebony,
sensual perfume of every kind-
as many sensual perfumes as you can;
and may you visit many Egyptian cities
to learn and go on learning from their scholars.

Keep Ithaka always in your mind.
Arriving there is what you’re destined for.
But don’t hurry the journey at all.
Better if it lasts for years,
so you’re old by the time you reach the island,
wealthy with all you’ve gained on the way,
not expecting Ithaka to make you rich.
Ithaka gave you the marvelous journey.
Without her you wouldn’t have set out.
She has nothing left to give you now.

And if you find her poor, Ithaka won’t have fooled you.
Wise as you will have become, so full of experience,
you’ll have understood by then what these Ithakas mean.

Day 293


Well I hate to be redundant but this was another weird day at the hospital. Everything with my blood counts is fine – let’s get that out of the way. My white count is coming back up and around 2.4 now, platelets are up to 113,000. They are planning to start my third round next Monday. I was a little surprised by that considering my white count isn’t very high. It seems a likely scenario for making me neutropenic pretty quickly, but they didn’t seem concerned about that. The white count should be higher on Monday and I think the expectation is that it will continue to come up until it drops again around the second or third week. As usually, we’ll just wait and see. If they’re right and things go smoothly, this would put me on a schedule of treatments every 6 weeks, which means I would finish in a shorter period of time than the 8 week schedule. That would be a wonderful thing!

So onto the weird part … I ended up sitting next to a woman in the waiting room that I see there almost every time I come in. She started up a conversation with me and commented on how she sees me all the time. We ended up sharing our stories for almost 2 hours while we both waited. She is 57 years old and looks perfectly healthy and wonderful for that age (not that I consider that old!). I have actually thought from time to time that she reminds me of my mother. When she was in her 30s, she was diagnosed with near-fatal liver disease and underwent a year of intensive treatment. She was fine after that until this past January when she began having blood issues that ultimately resulted in the diagnosis of an extremely rare form of lymphatic cancer that is not curable. It is the outcome, most likely, of the treatment she went through for the liver disease. Shortly after her diagnosis, her husband, an aerospace engineer and avid cyclist (over 7,000 miles/year on his bike) was hit by a car while riding. He was temporarily paralyzed and lost significant motor control over his hands, shoulder, one of his legs and a portion of his low back. He was hospitalized for 3 months, during which time she delayed treatment to take care of him. He lost his job because he could no longer use his hands and eventually lost insurance. Because of Maryland state laws, they only received $30,000 in payment from the lawsuit from the accident which didn’t even cover the cost of his Shock Trauma visit, nevermind the months of hospitalization and rehabilitation. They have been able to secure some insurance coverage but have had  to cut down to very spare living to pay the medical bills. Both are devout Christians who have been missionaries and cared for several children in-need over their lifetime. As she said, “we paid all of our bills on time, went to church and lived a respectful and giving life. I’m not quite sure what we did to deserve all of this.”

Believe it or not, there is actually more to this story. She was an incredible woman and she asked me lots of questions about my own experience. She kept asking me questions though about my prognosis and how I mentally handle all of it. I felt a little embarrassed to say that I don’t worry about it that much any more. That I want and plan to be here for my children as long as humanly possible and failing at this fight is not an option, so I don’t even consider it. I also hate when people use the word “prognosis” because it sounds as if there must be a timeline placed on me. I envision it like the sands of time running out. Because it has a negative connotation for me, I don’t think about it. And my doctor has never given me a timeline. She said in the very beginning that I had a very good chance of being cured. Although that only means living past 5 years without recurrence in the cancer world, I know that the longer I live, the greater my chances. I also know that I’ve focused on a number of positive stories of people living well over 5 to 10 years following diagnosis. I didn’t called this blog “Super Girl” for nothing! I plan to do whatever I can.

So why was all of this weird to me? Well, I had been listening to a very intense CD on the drive there which essentially said that we should never look at the bad things that happen in our lives and question why God or the Universe – or whatever it is that you believe – did this to us. But rather that these moments are when that spirit is most connected to us, giving us a mystery to unravel to change the course we are moving along. These bad things happen when we are in a dark phase, disconnected from ourselves – they are events to help us reconnect and become stronger. I know that some of you will read this and completely disagree and say it is a bunch of bunk. I am not going to express any sort of opinion about that right now. But the author further discusses that we need to realize that each person, good or bad comes into our life for a reason. I supposed I was thinking about all of that when she was talking to me. I was wondering why it is that I just connected with her. I was also beginning to question my own positive attitude and wonder if it is a form of denial? But then I question what the opposite would be? Acceptance that I am fighting a fatal disease that could kill me? Well yes, but I could also die in a car accident or have something horrible happen to someone I love. This is my journey right now and for now it is making every day far better than it was a year ago. I’m taking as much positive as I can out of this experience and simply hoping that I will be given the opportunity to continue to live for many more years and to transform my own life, the lives of those around me and the lives of people I may connect with in the future as a result of this experience.

Ok, I’m guessing you all need a breather after this post! I’m a little exhausted myself :) I hope everyone has a great week. Enjoy the warm weather.

Day 286


Today was interesting. I went in for my blood check and the guy drawing my blood put an IV line in and said, “yeah, you’ll probably need platelets today.” I said, “really? I thought my counts should be coming up by now.” And he proceeded to say that basically my blood was coming out really fast when he was drawing it and showed me how it spread out on this gauze pad. He said that, in his experience, these were signs of low platelets. Of course, it got me a little nervous but I tried to remain level-headed, though feeling a bit down going in to see the nurse. Well it turns out that my platelets basically skyrocketed to 110,000, up from the 30,000 point they had been hovering at for 2 weeks. I was thrilled! Unfortunately, my white counts were still dropping. They are down to 1.4 and I’m now neutropenic … again. I was really hoping I was going to make it through this time without going there, and was really shocked to see my counts still going down at week 5. It’s all normal and nothing to worry about. The crappy part is that Kieran has strep throat and a sinus infection and, while leaving the hospital I got a call from Ty’s school that he wasn’t feeling well. Now he is home with a stomach bug. They put me on an antibiotic to try to prevent me from getting any of these lovely things. I feel like I have only myself to blame because I was just saying to a friend the other day how great my kids’ immune systems were. I knew as soon as the words came out of my mouth that I was doomed.

Despite the low white count, I have been feeling really great. I actually went back to yoga last week and very successfully finished a hot yoga class. I was pretty nervous going into the class, but I was very pleasantly surprised to see what I was capable of doing and how much stamina I had. Being able to do it gave me further motivation to keep working. I can see that I am getting stronger. I really am starting to feel like me again.

I’m not going to let the white counts get me down this week, but I will try to be careful and avoid as many germs as possible. One of the things I was most grateful for this past week was that I was here to comfort Kieran while he was sick. He was so miserable over the weekend and just wanted to lay with mommy all day long. I kept thinking about what he would have to go through if I wasn’t here, but more importantly, how truly, truly grateful I am that I am here.

For anyone who’s paying attention to my dietary adjustments, I’ve been going 90% vegetarian and 70% vegan (these are estimates!) for about a month now. The vegetarian part is relatively easy for me, though I do find myself eating more carbs than I would like and probably more sugar as a result of being hungry. As much as I like beans and other proteins, I don’t always feel satisfied with just vegetables. I haven’t completely given into the idea of doing vegan yet. I really like cheese and I really like REAL ice cream. I tried non-dairy coconut milk ice cream this week, on the recommendation of a good friend, and it tastes good, but it’s not the real thing. I’ve decided to take things slowly, cutting out and replacing foods here and there rather than all at once. I also purchased a new vegetarian family cookbook and am scoping out my Moosewood cookbook for new ideas. It’s an adventure!

Day 279


I’ve been meaning to sit down and write for a while now but I just can’t seem to find the time. Or I should say that I prefer to sleep! But I do have good news to report. I’m at the start of week 4 of round two and my platelets dropped into the mid 30s last Monday but have remained stable since then. My white count is also holding up well. It was still dropping today but was at 2.3 which means I am not neutropenic. Thus, I will probably make it through this round without needing any transfusions and no neutropenia. This is how it is supposed to go. Now we will just need to wait and see how long it takes for my platelets to get back up to 75,000 to determine my long-term schedule. I will either go every 6 weeks or 8 weeks. In the meantime, I only have to go to the hospital once a week now so that’s making things a little easier.

Overall I have been feeling great. My energy level is up and I’ve been noticing improvements in my workouts. I tried my second run today and it went a little better than the first one. I think I was so surprised by how difficult it was the first time out that I was beating myself up over it. Today I went out with the idea that if I make it to the end of the street, that’s an accomplishment. Just so everyone knows, we have hills everywhere where I live, so making it to the end of my street is a decent little run uphill. I didn’t quite make it this time but was close. Rather than feeling bad about it, I’m looking at it as a goal for next time. Baby steps.

I’m actually approaching many things in my life these days with “baby steps.” I have gotten to a really great place in my mind, a really peaceful place, where I am learning to let go of old behaviors that increased my stress levels. But this process has been long and challenging. My entire life I have been someone who focused on whatever is next and never really took the time to enjoy what is now. Even when I was trying to enjoy a moment, my head would spin with thoughts of work, relationships, money, anything. By constantly being preoccupied with the “what-ifs” and the “to-dos,” I was never really fully present in what I was doing. I catch myself when I do that now. And it’s very simple to snap out of it. Simply think to yourself, “what’s more important? contemplating whether or not I’ll pay off the credit card and tallying numbers in my head or laughing so hard with my kids that our bellies hurt?” If I wasn’t here tomorrow, which one really matters? I don’t mean it in a morbid way, but that’s how we all should live – focusing on what really matters and not wasting energy on the things that don’t.

As one of my favorite books, The Happiness Project says, “the days are long but the years are short.” The HP also defines this important rule for adulthood: “What you do everyday matters more than what you do once in a while.” Hopefully I will be here for many, many, many years to come but for now I go to sleep each night knowing that I gave my kids as much love as I could that day and that’s all that matters.