June 23, 2016

Sorry I haven't written

The last few weeks I've been struck with terrible fatigue. It's probably due to the double dose of  Keppra, the anti-seizure med. Dr G  increased it and then went  out  of town, so I  haven't been able to talk with him. Fatigue is also one of the side effects listed for Keytruda. Maybe the combination of the two drugs is causing my fatigue. Who knows? I see Dr G in two weeks and will ask him then.

At any rate, I'm tired all the time and usually have about one hour of energy before I need to crash. That's not enough time to do much more than shower and dress, or eat something, or start some laundry. I'm still not driving due to the seizure meds.

Last night I actually had three focal point seizures like the first one. We saw a play a few weeks ago and I had several  bouts of the same thing -- my right hand shakes uncontrollably, moving in and out of a fist; my thumb gets "caught" between fingers and everything freezes up for a couple of minutes; I feel panicky but it's all over in 2-3 minutes. Still, it's hard to type with only one hand, even if it's my dominant hand, and the fact that the seizures haven't stopped completely frightens me. Perhaps I should call the gamma knife doctor until I can see Dr G.

I will try to post more frequently.


  1. Glad to hear from you Jill. I know the fatigue is probably very frustrating and the seizures...scary. Hang in there. I am thinking of you and sending you lots of healing love. Keep us posted as to what Dr. G. has to say....or the gamma knife doc.

  2. well wishes and love from Arkansas!

  3. I am so sorry! So stressful. I hope you get it still figured out and in the best way possible!

  4. Jill—I've been lurking for a long time finding inspiration from your blog. I appreciate your clear and intelligent writing. I understand more about metastatic breast cancer and have stopped sniveling about my experience with a treatable case. I want to add my voice to those who wish you strength when you are having discouraging times.

  5. Thank you for your posts! Take good care and know you are being prayed for!

  6. Hi Jill,

    I am hoping to meet you up on pill hill one of these days. I am a 47 year old metavivor that just learned her cancer recurred after a short 9 months of NED. I find strength in your story as I look at my precious 6 and 8 year olds and get truly scared. You are an inspiration to me.

    Lisa (lbocken@yahoo.com)

  7. tired, fatigued, lots of naps - but pulling off this life-style. so many doctors appointments, tests, markers, injections, IVs. thanks for your story. it helps to know that someone is having same symptoms that i'm having. makes it easier to accept it and set your life pace at a workable level. thanks.