Week 8 Limbo

18 Jan

At the start of this week, Susie’s platelets were at 8k (i.e. very very very low).  The plan of action was a week of daily intravenous steroids.  If the steroids did not kick start her bone marrow production, then we would be moving to immunoglobulin.  For you cliff note fans, Susie’s platelets hovered between 7k and 8k all week.  So, next week she will be taking immunoglobulin.  In addition to her having low platelets and red blood cells, her white bloods cells have also fallen.  So, our house is under quarantine and Susie will now be wearing an ever sexy mask (picture soon to come).

BloodChartsAttached is a few charts that highlight how her blood has been trending.  The drop in platelets is quite steep, while the white and red blood cells drop has a more gradual decline.  Whether there is something to read from these charts, I do not know.  I could make comments about the Absolute Neutrophil (ANC) changes as related to WBC, but that would be pure speculation.  The last time Susie’s ANC was below .5 (it is at .6 as of Friday), she received an injection of Neupogen.  From talking with our Hematologist, the immunoglobulin will kick start both white and red blood cell production.  So, we’ll just cross our fingers that Monday’s intravenous fluids is really magical.

In the meantime, the steroids have given Susie a bit of a boost in wakefulness/ energy.  She did a couple of short walks with myself and Leora down to Fresh Plus, our local grocery store.  She helped with making dinner the other night, we used a roasted Chicken that Leslie Renfro dropped off to make Chicken Noodle Soup.  I was the prep cook and taster.  We made enough that we could freeze a batch for pulling out next week.  Susie was also a hit with the other patients receiving intravenous medication at Texas Oncology.  We met a man, who joined his father that was undergoing treatment, that had a similar Air Force family story as Susie’s family (Born in Lubbock, Lived in Hawaii and Japan, High School in Austin where Dad retired at Bergstrom).  We also met another family that was sweet as a button supporting their sister/ daughter/ wife going through breast cancer treatment.  They were a long time Austin family, so there was lots of discussion about landmarks, restaurants and so on.  The cherry on top was meeting a woman in her 80s who had recently gotten out of the hospital.  She was there for two weeks and so happy to be around other people, chipper and humorous beyond get out.  Susie mentioned she looked like Maggie Smith, which made the conversation and her cheeks glow even more.  She was a big fan of Downton Abbey, even had the book with her.

We have lots of family in town for the long weekend.  Ann and David came in for a friend’s funeral.  The Charleys and the Cooper-Wilsons are also coming, but for a visit.  We plan to cross paths with everyone, but in a limited capacity.  It has been hard for Susie being isolated.  She thrives when being around loved ones.  Hopefully, we can stop walking on egg shells before the end of the month.  Fortunately, we can have a spontaneous date in our own home with an online movie or show to cut the tension and feeling of frustration.  The movies don’t take away the huge unknown elephant in the room, but they mask our perception/ distracts us from constantly trying to figure the situation of our life.

In the meantime, we will smile and come up with creative and humorous things to keep a positive attitude.  Susie wants to buy a bunch of tiny doll house plates and stuff them into her pockets to show her doctor that she now has more platelets.  She’s short about 130,000 and I’m not sure her pockets are big enough.  Nevertheless, I like the idea.

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.