Notes From Supergirl

My Diary from the Trenches

Day 199

December16

It’s weird to think that tomorrow will be 200 days since this whole thing started. I hope that at some point, I will be able to bring a close to this on-going tally of days. For me, that point will be when I am finished with chemo and completely in remission. I am in remission now, just to clarify, but I certainly don’t feel like I am anywhere close to being finished with treatment.

I think I spoke far too quickly in my last post when I said something about things seeming easier. I finished the outpatient chemo last week and on the 4th day of chemo, my platelets had already dropped 20,000.  When I went in for a bloodcheck this Monday, they had dropped 20,000 again and another 20,000 today. As you can imagine, there isn’t much farther for them to go before I reach a critical area of needing platelet transfusions again. Rather than having to go to the hospital once a week, as it was originally explained to me, I now have to go every other day for at least the next two weeks and will most likely be faced with having a transfusion. And we all know that my body does not respond well to platelet transfusions. I don’t even want to discuss the various scenarios or the fact that all of this will be playing out the week of Christmas. I know that I have to take things day by day as none of us know exactly what my body will do. I’ve already had a complete meltdown over the thought of a stay in the hospital over Christmas. But there is no way at all of knowing right now how any of this will play out. I have stayed strong through all of this and I recognize that what is happening right now with my blood counts is temporary. I don’t have leukemia anymore and even if I had to stay in the hospital for a short time again, it is not because of any infections or illness, it is simply to keep me safe. But again, there is as much chance that my platelets will stabilize or even respond well to a transfusion that they will drop, so there is no point dwelling on worst case scenarios. For now I am grateful I will be home to see my kids’ holiday play tomorrow and hopefully do some fun stuff with them over the weekend. I guess this is just a perfect reminder that every single day does matter.

So all of that negative platelet stuff aside, I have been doing really well. I’ve been staying healthy, exercising and putting on weight. I am almost back to my normal weight and my hair is finally starting to grow in. I’ve been doing a lot with the kids and doing a lot to prepare for Christmas. I am in desperate need of a vacation, however. As good as I feel, I am emotionally completely exhausted from this year and physically exhausted from all of the trips to the hospital and all of the day to day things I need to take care of in my life.

In the past week or two, I have thought a lot about my mom and how much I wish she were here right now. The passing of Elizabeth Edwards hit me really hard. She went through a similar battle to what my mom went through. What upset me so much about their situations is that after they were diagnosed with cancer, they spent so many years fighting it only to lose their battle in the end. I have only spent 7 months fighting cancer and I want more than anything just to be able to live my life and put this behind me. I question my decision to do the trial seeing what is happening to me right now. Will I spend another year dealing with chemo for good cause or will it take precious time away from me? I can only pray I am doing the right thing for the long term.

I didn’t mean to jump on here and sound down. I do struggle with the ups and downs of all of this. I struggle with the depression of seeing so many gravely ill patients every time I go to the cancer center and hoping I don’t end up being one of them. I love when people tell me uplifting stories about others who have gone through this and are doing really well right now. I hold onto faith and hope like a beloved security blanket.

As we get closer to Christmas, all I can say is savor these moments. I get so frustrated with people that don’t realize how blessed they are. Just to be able to go to work every day or to take your kids to school and not worry about whether or not you will make it home to get them is a gift. Yes, life gives us enormous stresses sometimes, but to be alive and to be healthy and have those we love around us be healthy and safe too is such a precious gift.

I will keep everyone posted on the platelet situation. Please keep my platelets in your thoughts :) Maybe we can generate some serious platelet producing energy with enough good thoughts!

posted under The Daily Record
8 Comments to

“Day 199”

  1. Avatar December 16th, 2010 at 8:18 pm Martha Says:

    I was feeling pretty down about my job and fussy parents yesterday…rushing to do some shopping for a child at my school…feeling pressure to get the shopping over and then I realized that the reason I was shopping was because this child’s mother has a brain tumor. She can’t drive and rush around.
    You will be helping others with this trial. Your Mom did it and you are her daughter…looking toward something positive in the negative part of your life. I will be glad to rush around, and you will be treasuring time with Ty and Kieran. What better way to celebrate Christmas.


  2. Avatar December 16th, 2010 at 8:28 pm Gina Says:

    Jess-

    Thank you so much for the reminder of our gifts. And I will send platelet energy your way!


  3. Avatar December 16th, 2010 at 9:18 pm Jackie Yau Says:

    Hey Jess,

    Your strength and wisdom as you navigate through this newest situation awes me. I really appreciate your perspective and wish you the best in the coming weeks. I couldn’t agree more about the how precious each moment we have with family and friends are and although life is stressful, there’s a bigger picture to focus on.

    I send you warm and energetic thoughts to get those platelets going!

    Take care!!! Hugs!!!


  4. Avatar December 16th, 2010 at 10:13 pm Heather Says:

    No meltdowns allowed! :) Save it for a girls weekend trip—-which needs to happen! And, remember, Christmas morning isn’t about the location…it’s about the company you are with. Much love, lady.


  5. Avatar December 17th, 2010 at 3:04 pm Meredith Lewis Says:

    Sending platelet prayers your way!


  6. Avatar December 17th, 2010 at 6:01 pm Holly Says:

    You are right Jess, you deserve a vacation from this, I’m with Heather- girls weekend!!! Lets get planning! Hope you enjoyed the boys Christmas play, we had Ethans today- kids are a hoot!


  7. Avatar December 20th, 2010 at 1:51 pm Kim Says:

    Jess- once again your words have hit me at the most opportune time…. (actually I could have read this over the weekend when I was on holiday overdrive and the stress levels were super high to give me more perspective – amazing how easy it is to lose sight and perspective in the midst of stress even when one “knows better” than to take all the gifts they have for granted) Anyhow, I digress…

    Keep your head (and platelets :) ) up girl! If nothing else, then push back Christmas a few days (the boys aren’t old enough to really understand which actual day is Christmas morning!). It will all work out and the moments you treasure is what will count in the end.

    Thinking of you and wishing you the best


  8. Avatar December 21st, 2010 at 11:05 pm Chip Says:

    Jess -

    I hope you and Brian and the boys have a great Christmas. Keep the updates coming.

    Chip