Notes From Supergirl

My Diary from the Trenches

Day 240


I have been meaning to sit down and write for a few days now but the snow has completely detoured most of my well-meaning intentions. It seems my kids are only going to school 2-3 days a week lately between holidays and snow. I actually got a snow day myself today when the plow had not gotten to the street by the time I was supposed to get to the hospital for blood work. I really would have liked to go just to have a better idea of whether or not I am starting Round 2 of chemo on Monday, but now I won’t know until literally Monday morning. I will go in for blood work and if things are where they need to be I will start chemo then, otherwise I will be delayed again or potentially pulled off the study. They said not to think to that extreme the last time I went in (last week) so I’m not all too worried about it. The issue is just that my platelets weren’t high enough.

The snow is definitely stressing me out. Last night we lost our power and were hovered in sleeping bags in front of the fire all night. It was actually a really wonderful family moment, yet in the back of my mind I was initially thinking about how I was trapped in my house and what if I had to get to the hospital? I know it was silly, but it is funny how your mindset changes after you go through things. This morning I was out to shovel the driveway as fast as I could because I didn’t wanted to be “trapped.” We are scheduled for snow again next week and I am already wondering if I’ll have to sleep in a hotel for 3 nights while I go for chemo just so I make sure I can get there in the morning. So dear snow, please go away! And as my friend Heather pointed out, let’s all keep our fingers-crossed that the groundhog does not see his shadow next week.

In other news, I went to New York last week which was my first escape from home in almost a year. We had an amazing time. We went to see Blue Man Group and I was randomly picked out of the audience to go on stage. When I saw them eying me up, the only thing going through my head was “oh god, don’t pick me because what if my wig comes off on stage in front of all these people?!?!” It turns out Brian and my cousin were thinking the same thing. Fortunately the powers that be were on my side that day and the skit I was doing didn’t involve any hair pulling. It was a really fun scene that I got to be very playful in – or as my cousin said, “cheeky” – and I have to say, it was one of the most fun, memorable moments of my life. I loved it. Below is the photo they took as we walked off stage …

They obviously had no idea who they pulled on stage or how much it meant to them. I’m thinking of writing them a letter to let them know.

This weekend I am so excited for two major events. Saturday, Brian and I were invited to the Ulman Fund’s Blue Jean Ball as a guest of Brian, one of their directors and someone who has become a great supporter and friend. Sunday, Roseann, my fabulous triathlete oncology nurse, is hosting an open house for The Healing House, an idea that she and I conceived of while I was in the hospital. You can read more about the event here:

I can speak for myself, and probably a little for Roseann, when I say that it is very surreal that this event is taking place on Sunday. When we first talked about it, the idea seemed so distant and almost fanciful, but through Roseann’s hard work, diligence and good fortune of connecting with so many wonderful people, it is all becoming very real. I will keep you posted on all of this.

Lastly, I wanted to share a video I watched today by a writer name Bruce Feiler. He wrote a book called “Walking the Bible,” which you may have heard of. A few years after publishing that he was diagnosed with a very rare form of cancer that was discovered in much the same way mine was – “a routine doctor’s visit and a routine blood test showed one blood level was off.” He had two young twin daughters the same age as my oldest son (four at the time) and he and was came up with the idea of creating a “council of dads” in case something should happen to him. Although the video only speaks about the council for a brief time, the reason it was so powerful to me is because he talks about how cancer has the power to transform friendships. And the words he used to describe the experience of having people visit him and the conversations that took place completely mirrors my own sentiments, although he explains in such an eloquent way that I haven’t been able to. Below is a quote I transcribed. If you don’t have time to watch the video, I hope that anyone reading this who is going through this experience or supporting someone fighting their own battle will understand that the “beautiful gift wrapped in the ugly package” of cancer is truly the bonds we form with those who join us on the journey.

“Cancer is a passport to intimacy. It is an invitation — to enter the most vital arenas of human life, the most sensitive and the most frightening. The ones we never want to go to but when we do go there we feel incredibly transformed.” – Bruce Feiler

He describes how the treatment transformed him physically into something less human. He lost 15 pounds, he lost his hair, he became a ghost. He expected that those around him would back away, yet the worse he got, the closer they came. Having lived through this very experience, I can’t even talk about this without crying because it is the overwhelming power of the love and support that people gave me at those very worst times that pulled me through and fill me an unexplainable amount of joy every single day. If there is one thing I have learned from this experience, as I know you all hear me say over and over, never let a day go without fully sharing love and friendship. In the end it is the only thing that matters.

Okay, I’m done with my lecture for today. But seriously, if you have a moment for a little warm cry, please watch the video …

Day 232


People have been calling and emailing me about not updating the blog, so I apologize and will now give you the latest. Fortunately, there is not much to report. Last week I went for a bloodcheck and my white counts had come up to 2.5 and I was no longer neutropenic. However, my platelets had dropped 10,000 to 59,000 so they opted to give me a full 8 weeks to recover from the chemo. The doctor wasn’t concerned about the platelet drop and said it is normal to see some ups and downs while the marrow recovers. But in order to go to the next cycle, my platelets need to be at 75,000. I go to the hospital tomorrow for another count check and am hoping they are coming back up.

Although I will confess to having a fair amount anxiety over the platelets when I found out, I got over it pretty quickly and have been having a great time NOT going to the hospital and living a normal life. I’ve been doing a lot with the kids, running errands and doing all of the wonderful day-to-day things I missed. This weekend I am off to New York for my first “vacation” in almost a year! And next weekend, I have social activities planned for Friday night through Sunday so I am taking advantage of every moment I can before I start the next chemo.

To be perfectly blunt, I feel pretty amazing. I’m off of antibiotics – finally – since I’m no longer neutropenic, and I have a lot more energy. I’m getting better at mentally handling challenges that have come my way. I’m not letting things bother me like they used to. And I’m trying to really embrace the idea of just living in the moment. I feel like I can more clearly see how stress has impacted my body, mindset and way of life over the last several years of my life. Because I am better at recognizing it, I can more quickly turn it off and refocus my energy on more positive things. I guess I’m in such a good mood because I’ve been out and able to interact with the world and my friends. The trick will be to keep this momentum going through the next cycle.

Day 221


I went in for bloodwork on Thursday and my white counts were STILL really low. They had budged slightly, up to 1.1 from 0.7. The doctor wasn’t concerned and told me not to worry about it so much. She said I should live my life normally and gave me the okay to travel if I wanted to. Going to any major city with a big hospital is fine, but she would prefer I stay away from remote locations until my counts improve. She also told me not to keep myself locked in the house – it’s fine to go the grocery store, a restaurant, whatever, just wash my hands. My kids are the biggest threat to my health because they will probably carry the most germs. She said there’s no need to wear a mask or restrict my diet because there’s no scientific evidence that any of that means anything in terms of cutting down virus transmission, but washing your hands does. My oncology nurse was there too and, I think, kind of dumb-founded because when we are in-patient they are so strict about everything and they reinforce those instructions with us. Outpatient is definitely a different world, but I much prefer it to being in the hospital again.

I’m not going to rush off to vacation – yet – but I have been getting out more and worrying less. I know my counts have to come up eventually … And I do have brief vacation plans in the coming weeks that I fully intend to fulfill.

Tomorrow I turn 35 and, as I told a friend of mine, I can’t believe I’m actually excited to be getting older. I think each year will feel like an accomplishment from this point forward. So in the spirit the new year and another year older, I’m just going to share this quote I came across today. I had clipped it from a magazine in 2009 and I just found it this morning when I was cleaning out the folder where I keep all of these random things. It sums things up perfectly.

“The knowledge that you have emerged wiser and stronger from setbacks means that you are, ever after, secure in your ability to survive. You will never truly know yourself, or the strength of your relationships, until both have been tested by adversity. Such knowledge is a true gift … It is painfully won, and it has been worth more to me than any qualification I ever earned.”

- from J.K. Rowling’s 2008 Harvard commencement address

Day 217


Well I’m disappointed to report that my white count was still at 0.7 today! The funny part is, I was shocked but really had no other reaction to it. I was in such a good mood going into the hospital, partly because I thought my counts would be up, that I guess I was able to keep the good vibe going through the bad news. And it’s not all bad, really. The total count is 0.7 but my neutrophils came up a bit since last week. That means that things are probably starting to go into production. The awesome news is that my platelets are up to 70,000, the highest they’ve been in weeks. I’m not used to having good platelets and red cells, but low white cells. I know that they will eventually come up, it’s just going much slower than expected.

I sucked it up and wore a mask when I went to Target today. Yes, I felt like a freak sticking out like a sore thumb but getting over my own vanity is one of the things I’ve learned to laugh about through this process. I’m more disappointed I had to cancel yet more plans that would have involved socializing with friends, but I can only hope that as soon as I am normal I will be able to make up for it. I will stay tight at home for the next few days and then have another count done on Thursday.

The pain in my side has been a little bit better since Saturday. I’m trying different dietary changes and it’s hard to say if that or the improved mental state is what’s helping. I’ve gone ahead and done some yoga and exercising again and that has certainly helped to improve my outlook. Oh, and by the way, thank you all who have posted, texted or called me in the last few days to tell me I’m not crazy! I love you all and I’m so glad to hear I’m not the only one walking around a little anxious.

In other news, I found a great book called “The Book of Awesome.” It is completely unrelated to the “Awesome Book of Thanks” that I was promoting around Thanksgiving, but I guess I have a thing for “awesome” books. In any case, it’s about the little things in life that really make us happy, and I do mean little. Some examples are sleeping in new bed sheets, wearing underwear just out of the dryer, tripping and almost falling but no one saw you, hitting a bunch of green lights in a row, etc. It is a great reminder of the little moments we have each day that make us happy. For me, I actually thought about those “awesome” things while I was out and about today and here is my short list for a Monday:

- feeling the rush of hot air on my face when I walk inside from the cold

- when my children get dressed without a fuss

- Kieran taking a nap (really awesome!)

- finding out there is orange juice in the fridge downstairs when I thought we were out of it

- getting my temperature taken and it’s NORMAL!

- opening a package to discover the lipstick I ordered blindly online may actually be the most perfect lipstick I’ve ever owned

- when my iPod plays the most perfect set of songs randomly while on shuffle

Not bad for one day. Who needs white cells anyways? Ha, ha, yeah, um, I do, seriously!!! Anyways, I’m thinking that if we all made lists of 5 small things that really made us happy each day, a bad day might not seem so bad after all.

Day 215


On Thursday I went for my MRI and, while considering a trip to the ER today, found out that the results of that showed that everything is fine with all of my organs and my spine. I woke up with severe pain in my right side and proceeded to load up on all my meds (pain meds and antibiotics). I’m not sure if it was reality, stress, anxiety, the pain itself, or the combination of medications, but I ended up feeling horrible. I was light-headed, nauseous, dizzy, tired and still in pain. After a few hours, we decided it was worth a trip to the hospital. On the way down, I called the on-call doctor to tell her I was coming in and she looked at the MRI results and said there was no point. She said that if I could make it through the weekend, it would be best just to talk to my doctor on Monday, as scheduled, because I’m not displaying symptoms of anything on paper. No fevers, no infections, no blood issues, no bad scans.

I was relieved to hear the news and relieved to come home, but I think at that point, I had reached the peak of anxiety or panic and put the rest of my body into overdrive. I basically started having anxiety symptoms that I started having this time last year when I found out something was wrong with me to begin with. Perhaps I shouldn’t be so open about all of this because you may all clearly see me as a crazy person after all of these stories! After everything I’ve been through, I thought that I had learned to better handle these types of situations, but I think the stress of the holidays, the kids being out of school for so long, the dramatic drops from the chemo and resulting neutropenia and then the unexplainable pain in my side, I just wasn’t able to handle it anymore. On top of that, I was told not to exercise for a while and I can’t really drink alcohol and I hardly have any alone, down time, so I think I’ve just struggled to take control of the stress and try to manage it. Although medications can help with that, it doesn’t really resolve the root of the problem.

Ok, so, now that it’s been a few hours since the total panic, I am actually feeling a little relieved. I am hitting the elliptical trainer tonight to decompress and I am deciding, in honor of New Year’s Day, that it is time to let all of this go. I am setting in place a strict 10 minute meditation schedule for each day and I am going to approach this as a job that needs to be completed. I may also seek professional help!

Despite my pain, I had a great New Year’s with friends and family. I am glad that the holidays are almost over and it’s only a couple of days more until the kids go back to school. I feel like I have had a month of joy and chaos and I am ready for some routine. I am ready to start anew and put 2010 far behind me.