Somewhere between

This afternoon you can find me somewhere between hopeful and apprehensive.

The platelet plan isn't working so well after all. The IVIG is taking just over a full week to start working. And then it only works for about 2 weeks. The Promacta seems to be doing very little, but I haven't been able to taper off of it without ending up in the single digits.

So I met with Dr. Hook last week and made a new plan.

Tonight will be my last dose of Promacta. Tomorrow morning at 7AM, I'll go to the Infusion Therapy Center for my weekly shot of Nplate. It's basically the same thing as Promacta, but through a shot instead of a pill. It has to happen every 7 days and has to be administered at the Infusion Therapy Center.

This is my last option before the following would take place....

1) Spleenectomy
2) Chemotherapy
3) Bone marrow transplant

Dr. Hook really dislikes options 2 and 3 for ITP because there are so many complications and risks associated. So I think those are very unlikely. I've talked extensively about why I don't think spleenectomy is the right answer for me. But it may come to that. And if it did, then I'd deal with it and hopefully it would work.

Dr. Hook also said that Nplate might work for 6 months to a year, and by then maybe new medicines will be available.

Anyway, bottom line: a new chapter starts tomorrow morning. It should take less than an hour, and then I'll be on my way to work and the rest of life. Continuing on with two blood tests per week for the time being.

I'm going to focus all my energies on Nplate working and leading to a remission. There's still that 1% chance of a spontaneous, permanent remission. (Actually, Dr. Hook said that 1% was wildly optimistic, but I like to round up.)

Day to day, I've been feeling good and healthy and normal. I'm working with a personal trainer which has been extremely fun and energizing. Work is good. Hobbies and friends are very good.

I don't want to take a new medicine. I don't want to take the old medicines. I want to live like I don't have this - but I know I need to be responsible.

Responsible...but not afraid. I don't want to live afraid.

I'm going to wake up tomorrow and get ready for the day. I'm going to check in on the 8th floor at the Infusion Therapy Center. A person will call me back to a room. I'll sit there and pray. And then a drug I don't exactly understand or desire will get injected into my body. Then I will wait a few minutes and leave. And it will work. It's going to work. And all the rest of the healthy things I'm doing will work, too. This will go away. Healing is happening and will happen. And if I have to be patient, then I'll be patient.

That's the option before me: trust and be patient. And make peace with the reality that life is unpredictable and there's only a handful of things I can actually control.

Thanks for listening.

Sometimes it feels so good to have a space to process and make peace with it all...scratch that. I might never make peace with it all. And that's okay.

Knowing you're here and always encouraging means more to me than you could ever know. Thank you.


  1. Prayers - hoping that today's session went well.

  2. Dearest Emily, you are always in my thoughts and prayers. We all walk our own path between the present and eternal peace. I sincerely wish I had the power to make your earthly journey more peaceful. We have to trust in God that He knows what He is doing, and He does.

  3. My prayers and thoughts are with you.
    Walking that path of the"unknown" is always scarey.
    Take His hand hold on tight ...He will go with you down that
    path AND it will be less "scarey"

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