Sunday, July 19, 2015

Caution: bones @ work (days 9-10)

The Neupogen shots I started Wednesday are designed to promote stem cell production and send them from my bone marrow to my blood stream for a successful harvest on Monday.

Friday I noticed some strong jaw pain, like wisdom teeth (removed years ago) were coming in. My skull hurt too, didn't quite feel like a migraine. Pain meds from earlier weren't working so we tried a migraine pill. Nope.

When I started to feel the lower back and hip bone aches I assumed the bones were gearing up to do some work. By Sunday the jaw/skull is clearly the ring leader (most painful) and my right arm has joined the hips and back in moderate bone pain. As long as I can be mobile when necessary, I will be happy.

Rubbing an achey skull

Amy and I have come up with a good 24 hour pain management plan...even though it had her up at 1:30am this morning. I don't know how anyone gets through this process alone. I'm so thankful I don't have to.

So far, bone pain doesn't touch the agony I experience from a bout of phlebitis, so I'll take it. Heat is another pro-tip for bone pain .....for those not yet on this journey.

Mental prep begins for the jugular catheter Monday that will filter my blood for 5-7 hours in an attempt to get 2MM stem cells. Some diagrams below the catheter placement and the collection process.

Catheter placement

Collection process 

Amy leaves today <sad face>, she is incredible at keeping a schedule and shooshing me when I'm being stubborn. Don't get me started on the day she ran errands in 70% humidity in 90F heat. She did come back Dewey and Love you Aimers!! Dana comes in Sunday for the harvest phase....which may mean there is some delicious home made soup in my future.YUM!


  1. So sad you have to go thru this. Stay strong. Love, Mom

  2. Mmmmmmmm. Home made soup. That'll kick hospital food to the kerb. Hang in there Hun. Keep your eyes on the prize at the end of this rodeo. . Gentle hugs and much love xxxx

  3. I went from GBS 9/2009 to last year diagnosed CIDP. My neurologist gave me Lyrica , didn't work my muscles hurt in my legs so bad. MRI showed buldging disks yet cant have surgery. I belong to the International GBS/CIDP and they are coming to my home down in the mid west in August. Have been reading about your brave strong journey . Congradulations for how far you have come. Prayers.

  4. Stay strong as you are. Rooting 4 you.:-)