Notes From Supergirl

My Diary from the Trenches

Day 589

January8

My bloodwork on Saturday morning was basically the same as Wednesday. Platelets were up slightly (40-43, which doesn’t really mean anything) and red counts were still low, but the same as Wednesday. My white count had dropped from 3.1 to 2.1, which was not comforting in the least. However, after having my meltdown in the car on the way home and going to every bad place imaginable in my head, Brian did offer a realistic perspective on the whole situation. We discussed the fact that this is all part of the process and none of the doctors or nurses are freaking out, so that’s a decent sign. Also, realistically, I just went through chemo so it’s not likely I would have any active cancer right now. Additionally, my old cells are dying off and my new ones should be taking over. And, of course, there is the fact that the doctor believes the counts dropped because of the medication. My always reassuring doctor friend Melly, confirmed that the medication they reduced takes almost 3 days to start to diminish in your system. The bottom line is that it could take at least a week to see any sort of change from the dose reduction. So I am not freaking out. Physically I feel okay, just low on energy because of the anemia. I am fighting some sinus issues and eager for my counts to come back up so that can go away. I also know that they tested me for all kinds of viruses and I didn’t have anything. The big picture is that my bone marrow is making a lot of adjustments right now and this is all part of the process. There will be ups and downs, but if the transplant took, things will improve over time and I must stay focused on the end result.

Today is actually the one-month anniversary of the transplant. Tomorrow I turn 36. Never, in a million years, would I have imagined this is what would be happening to my life at 36. But we take what we get and we make the best of it. I’m home with my family and I must keep faith that this will work. On Wednesday, I believe, they will draw blood to do the first test to see how many donor cells are there. I think that I will have the results of that at the end of the month. They are also planning to pull out my central line which would be great.

I’m keeping myself busy with little projects. On Friday I worked on a photo book commemorating 2011. It ended up being 30 pages of photos that highlighted all of our vacations and everyday adventures. I do one every year, but thanks to Shutterfly, they keep getting bigger and more complicated. Shutterfly now lets you custom design the entire book, which for a designer is a dream and a nightmare. What I planned to do in an hour took me over 6 hours to do! But I’m really happy with how it turned out. I think it’s also a great way to show that amidst the chemo and all of the ups and downs with my health, we triumphed as a family in doing as much as we could and enjoying the day to day. Years from now, I hope the kids won’t really remember the hospital stays and the days I didn’t feel good. With a book like this, it will help them remember all of the other great things we did – and it’s a good reminder for Brian and me as well.

Before I go, I wanted to share part of a piece written by my friend Gina. She is writing a parenting series that relates parenting to the seasons. I’ve told her how much I relate my experience right now to the seasons – I see this period in my life as my “winter,” my time to hibernate and rest. I look to the spring as my time of rebirth, regrowth and renewal. Her most recent piece was titled, “Nature’s Knowing: Patience and the Unknown.” This is an excerpt from it that offered great comfort to me and an important reminder that I must relax, have patience and have faith that my spring will come.

Patience is a gift of the winter. As much as we want to make spring come sooner (especially by the end of March!), spring comes in its own time. I might not know what kinds of afterschool activities (or how many) to offer my daughters. However, if I have patience and if I “try out” different combinations, I will eventually find what works for my children and our family. The perfect mix might not come the first time. It might take many variations. It might come with lots of effort on my part and it might come after a quick comment from my daughter. The important part is trusting that it will come. Trust the process. Know that with patience, commitment, and strength the answers will come. Spring always follows winter. There is no other way.

As I “try out the different combinations,” go through the ups and downs, my doctors and I will eventually find what works, but I have to “trust that it will come.”

One more quick thing I want to mention before I go. Chronicle Books just released this cookbook by an 11-year old named Jack Witherspoon. As the description states, Jack “was going through incredibly tough times battling leukemia for the second time and he sought solace in the Food Network and decided his dream was to become a chef.” He wrote this cookbook, Twist It Up, for kids and now cooks all over the place, raising money for cancer research.

The nurses used to joke with me in the hospital about how there would be 3 or 4 rooms with the Food Network on at night and wondered what is was that appealed to us so much about it. For me, perhaps, it was my natural love of cooking and my desire to get home and make all of these meals to heal my body. But I laughed and smiled when I saw that an 11-year old boy was doing the same thing! I plan on getting the cookbook for Ty because he, too, now has a love of Food Network, especially Cupcake Wars. Though Diners, Drive-Ins and Dives is a close second for him. Although he hasn’t ventured too far into cooking, he now wants to write a cookbook after hearing about this kid. We’ll put it on his to-do list. Anyways, if you’re looking for a cookbook for your kids, what a great one this would be to start with.

2 Comments to

“Day 589”

  1. Avatar January 8th, 2012 at 11:50 pm Chip Says:

    Jess -

    Just wanted to wish you a happy 36th birthday.

    You should go back and read your old blog entries about your other periodic freakouts and meltdowns. Almost all of them are because you are fearing the worst when your path to recovery hits a bend in the road. Remember that you have successfully negotiated every curve so far. You will continue to do so because you are who you are. Have faith in yourself, Captain.

    Chip


  2. Avatar January 9th, 2012 at 9:37 pm Heather Says:

    Ya know, Jess. Chip rocks. He’s always spot on with his comments. And, his timing is always perfect. He’s a keeper.