Notes From Supergirl

My Diary from the Trenches

Day 550


I’m sorry I haven’t posted anything lately. My schedule has been insane trying to fit in doctor’s appointments, tests, the holidays and life. Here is the update: I go in on Friday! I finished the last of my tests today and am cleared to go ahead with things. My donor also passed all of her tests and everything is ready. I will start chemo on Friday and do that for 5 days. On the 6th I will also have two “doses” of radiation and then the following day, December 7th, with be the transplant. I’m not sure how I feel about having the transplant on Pearl Harbor Day, but other than that, I’m excited. All of my appointments have gone well and all of my doctors are very optimistic and encouraging. I was even impressed and comforted by my radiologist today. Getting radiation was a major concern of mine, but it turns out that I will be getting an incredibly low dose that should not yield any side effects. The most likely long-term side effect would be cataracts sometime years from now, but those are fixed with a quick out-patient procedure. As the radiologist explained, most people will develop a cataract or two in their later years, so that would be likely to happen to me anyways. Most importantly, the radiation should not have any impact on my other organs – chemo has the potential to do far more damage to those than the radiation. And the radiation treatment is actually the most effective method of killing blood cancer cells and yields the most successful long-term outcomes. Would you believe I actually asked if I should be getting more radiation? He laughed and said no.

My visit with my transplant coordinator this week was also uplifting. I still have no signs of cancer and she emphasized that this is the best case scenario for someone to undergo a transplant. All in all, on paper, I have everything working in my favor. However, as we all know, that is never a guarantee. Science is on my side, but prayers, hope and lots of crossed fingers are what we need now to get through the rest of the unknowns.

I am feeling very good about getting started and very ready to get this over with. I have a long road ahead but feel strengthened by what I’ve already been through and by the continued incredible support system I have around me. Get ready, there will be loads of blogging ahead!

Day 535


I’m back from Disney and back to the chaos of our renovation and the loads of doctors visits. Despite a chest cold that I am getting over, believe it or not, I am savoring the madness of it all. Our trip was wonderful. Although a little stressful taking two young kids around Disney, they did amazingly well and Kieran, as he declared after our first day said, “Mommy, I did great at Disney – I didn’t run away!” All in all we soaked up as many rides and adventures as we could and still didn’t have time to get to everything. There were lots of thrills mixed in with smaller, special moments. Brian had a work meeting the night of the Ravens game and Kieran was passed out sound asleep, so Ty and I ordered Hard Rock Hotel Deluxe room service (delivered on a purple leopard-print tablecloth) and watched the game in style. I have tons of photos and videos that I plan to put into some sort of collection. That will be a good project for the next couple of weeks. We were also so excited to meet up with our friends Robyn, Paul and Phaedre there and all of the kids had a blast.

As for the medical update, prior to leaving, a CT scan had showed a couple of fungal spots on my lungs (nothing they were concerned with). They put me on an antifungal medication just as a precautionary and a repeat CT yesterday shows that there is improvement there. I’m getting over a chest cold but feeling much better than I was a few days ago. It’s amazing what a little stress will do to your immune system. I think the anxiety of work, school, kids, doctors and everything else on top of a rushed trip to Disney made me susceptible to a little more stress than I am used to. In the end, it was all worth it.

However, now my doctors are not in favor of me traveling for Thanksgiving. I will go in for transplant one week after that and they want me to be as healthy as possible. I’m allowed to live my life, but I should be avoiding sick people and large crowds for the next two weeks. So I will be laying low and doing a lot of cleaning, organizing and yoga to try to get ready for this next phase.

Day 524


Very quick post to say a couple of things:

- donor is perfect match (matches me identically on 10 out of 10 antigens)
- doctor said this is ideal time to do transplant and should yield highest opportunity for success
- as far as the hope I was looking for, he said there is a “very high likelihood” this will CURE me, but it’s a long, windy road ahead
- they couldn’t come up with any reason that I couldn’t snowboard after my transplant as long as my platelets were fine and I felt up to it (yeah!)
- food and isolation restrictions aren’t as terrible as I think I’m envisioning. It’s all about being safe.

And, oh yeah, I made it to Disney!!!! That means most of my last vision board worked so I guess it’s time to start a new one for this next phase. I think Paris might go on this one.

Thank you guys for all of your support. Chip, I love your research idea! It’s actually something that has been on my mind since I found out that a 20-something guy that lives very close to me was just diagnosed with leukemia. I’m so curious to know what kind of connections the doctors look for.

Have a wonderful weekend!

Day 521


I have been avoiding posting anything the last few days. I’ve gotten myself into a funk that I’m having a really hard time shaking. I have gone to some bad places in my head and I am trying desperately to refocus but it isn’t working very well. The delay in my schedule has given me far too much time to think and also far too many more things to worry about. Worry is always a waste but it is so hard to ignore.

Yesterday was also Halloween which was supposed to be this joyous 1-year anniversary of my coming home from my last transplant and instead, here we are again, in a much harder place. Rather than reflecting on how much I’ve overcome in the past year and a half, I feel like I have been thrown backwards. It is so hard to write about all of this because the emotions and the fears just pour out of me in tears. I want to be strong and fearless but I can’t help but be so afraid of what all of this means for me and my children. I did a terrible thing and took to the internet looking for hope and inspirational stories. Unfortunately I ended up going down too many wrong paths and ended up in a terrible abyss. There are a number of wonderful stories out there, but as Brian says, we are naturally drawn to the negative. We can’t help but look at the accident on the road when we pass it – feeling so sorry for what has happened, but so curious to explore the tragedy.

What has unraveled me is the issue of the change in my chromosome as well as the delay. When a doctor tells you about something and then asks if you have any questions, your mind has barely an opportunity to digest the information and is too focused on other details to be able to ask anything intelligible. Now that I have had time to process everything, I am stuck on the detail of what this change means for my prognosis. That is what I tried to investigate, but didn’t have nearly enough information to do so properly. Even if I knew everything and it was all bad, the reality is that what works for one person may or may not work for another. We are all individuals. I read a story about a man who went in with stage 4 AML (not even sure what that is) and he was a smoker and had kidney disease and diabetes. They didn’t think he was going to make it but did an autologous transplant and is several years in remission now, considered cured. On the other hand, there are all those tragic stories of young, healthy people in the prime of their life who did everything they could and didn’t make it. The bottom line is that it’s a crap-shoot. No matter how focused your mind, how healthy and pure your diet and how strong you try to be, there is only so much you can do. For a type-A personality like me, desperately trying to take control of my fate, this is out of my control.

I am not giving up. There is no reason to give up. There are still many things working in my favor. I just think that a couple of weeks ago, I truly believed that by focusing on gratitude and health and happiness, I had not only achieved it but would continue to. This has thrown me to the point that I see everything as a sign now of some tragic ending for me. I just want some sort of sign that there is hope. I know that having a matched donor is an incredible blessing, but I feel like I need a neon flashing sign! At the very least a good fortune cookie! Instead, I feel like every time I look for hope or distraction, it’s another reminder of what could be. I turned on the TV while I was working – hoping for distraction – and instead the commercial that was playing was talking about planning for your demise and taking care of your children! I turned it off.

Okay, meltdown is over. I need to concentrate on being productive. I guess I wanted to get that all out there so that this story is honest. Being SuperGirl means taking a few really hard hits sometimes. I’m exhausted and worn down, but I won’t give up. I meet with my transplant doctor tomorrow and plan to hope that he will be able to provide the encouragement that I need right now. I don’t believe they would tell me there is still a strong hope for a cure unless they meant it. I just want to know what the reality of my situation is. I don’t want false hope, just honest hope.