Week 10 Rinse and Repeat

2 Feb

This week was much like last week, i.e. daily IV steroids and Thursday immunoglobulin (IVIG).  The major difference is Susie had Susan Steffes and Susanna Sharpe join her at the infusion room on Thursday and then for lunch.  Yes, it was like the three musketeers, I mean the Three Sues/ Susans/ Susies.  I think they went to Upper Crust Bakery, were Susie ordered a healthy lentil soup to take home and started with desert.  She also thoughtfully brought Pearl and I cupcakes.

Susie’s dollhouse/ little plates, as she likes to refer to platelets, have increased to 20k (almost double from last Friday).  She’s still not playing with sharp objects, but has the energy to move around the house without assistance/ observation.  We’re hoping to get back out out walking.  Unfortunately, the weather seems to have fallen to freezing again.  I guess Punxsutawny Phil saw his shadow, so we’ll have six more weeks of winter and walking with a sweater, a coat and a hat (‘Okay campers, rise and shine, and don’t forget your booties cause its cold out there…its cold out there every day.‘).

Susie’s cousin, Leslie Callahan, brought over barbeque this week.  He brought over enough for dinner and many lunches.  During his visit, he asked what Susie’s main side effects have been from the daily steroids and weekly immunoglobulin (3 bottles of Octagam).  The main two side effects from the steroids is Susie during the day has a hard time relaxing (is a bit obsessive/ lacking in patience) and at night she has significant pain in her legs.  We’re trying to wake up every few hours in the night for her to take pain meds, so she does not wake up from the pain.  It is kind of hit and miss as to the frequency and intensity.  Thursday night seemed to be the worst experience, waking every two hours and the pain lasted until about 11 am.  Susie created a blanket tent in the infusion room to block everything/ one out of her space.  The nurses were so happy to see her come out of the tent, as the knew it meant the pain had subsided.

Susie had a MRI on Friday.  We will be seeing Dr. Groves, in addition to Dr. Helmer, on Monday.  The big discussion points are:

  • Does Susie finish the last five dosages of radiation?
  • Does she restart chemo and if so how and when?
  • Can she stop the IV steroids and do a higher dosage or frequency of immunoglobulin (Octagam)?
  • Susie’s white blood cells seem to be recovering, but red blood cells are still going down.  Should we do a plasma transfusion to kick start her RBCs?

So, we have a few things to think about over the weekend.  It is a good thing we do not care who wins the Super Bowl.  I guess we will do laundry and try to relax.  Maybe we’ll get into season two of Lilyhammer, Susie really likes it (even with the subtitles).

Guy Lipof

Accomplished Engineering Executive with deep consulting and sales expertise in healthcare and life sciences, particularly in oncology, driving business strategy, delivering innovative solutions, and improving patient outcomes. Care partner and advocate for raising awareness about and investment towards Brain Cancer Research, such as Glioblastoma Multiforme and IDH mutant gliomas.