Week 5 Radiation (Christmas)

29 Dec

Susie has completed four weeks of radiation therapy, or more accurately 21 days.  This last week was three days of treatment, rather than five, as she was off Monday through Wednesday having a wee Christmas break.  Because Christmas fell on a Wednesday, her treatment this week was Thursday, Friday and Saturday.

ChristmasTreeSusie greatly enjoyed having a few days off for Christmas.  Gabriel and I noticed her energy levels on Monday was significantly higher than she had been in the past few weeks.  She was excited with Christmas coming and having all of us under the same roof.  Gabriel and I picked up a tree last week.  Susie was interested in having something that is aromatic, unlike our fake tree from the UK.  Susie greatly enjoyed getting the tree decorated with the kids (and Zoe Mahaffey).  It is always a joy to pull out ornaments with pictures of kids as toddlers and from specific events/ places (like Thanksgiving at Guadalupe River Ranch, Cambridge, Washington DC…).  Pearl and Susie really like looking at each ornament and reminiscing about them and discussing where they should be placed.  It was also great fun reading the Christmas Carol Advent Booklets.

ChristmasDayWith our home having a nice festive feel to it, we hosted a Christmas Eve dinner.  Susie’s sister from Tacoma, Kim, sent us Dungeness Crab from Seattle Seafoods.  The crab was shipped over the weekend and was frozen/ packed in dry ice.  We stored them in the freezer until the night before and thawed them in the refrigerator.  I cracked and cleaned them before dinner.  In addition to ourselves, Leora (Susie’s Mom), Fred (Stepfather) and Rosemary (Fred’s Sister) joined us for dinner.  Rosemary had never eaten/ cracked Dungeness Crab before, so she got to learn how to extract the deliciously sweet white meat from the crab legs and body.  It was great fun and we finished with a pot of tea, Christmas cookies baked by Leora and a faux fire on the television.  Christmas Day was spent out at Leora and Fred’s home.  Susie’s sister from Virginia, Ann Sharp, flew in that morning.  We enjoyed a bit of breakfast together, opening presents and getting Christmas dinner together.  Everyone chipped in and the entire day was such a delight (just peaceful and filled with joy).

So the beginning of the week was picture perfect.  Susie resumed radiation on Thursday.  She had a blood test that day and also met with her Radiation Oncologist, Dr. Thatikonda.  Susie mentioned her left ear has been bugging her.  Dr. Thatikonda looked at both ears and said it looks like she has an infection in her left ear.  She said it is not unusual to develop an ear infection with radiation around the ear, but that it should be treated with an antibiotic.  Susie was prescribed Levaquin.  In addition, we also found out that Susie’s platelet counts were below 50k (normal is between 150-400k), so she is now experiencing Thrombocytopenia (i.e. low platelet counts).  She experienced this condition 14 years ago (15k was her lowest/ nadir point), where we considered Susie getting a transfusion.  To make the situation more complicated, Susie Saturday night developed red dots on her legs and two palm sized regions on her back (called Petechiae).  This is also a symptom of Thrombocytopenia, but could be related to the antibiotic she started taking.  We talked to our local Neuro Oncologist and have decided to temporarily hold/ stop both her chemo/ Temozolomide and antibiotic/ Levaquin drugs, have a blood test on Monday and then review the CBC (Complete Blood Count) results.  Lastly, Susie’s hair is coming out in clumps.  She’s bald within a couple of inches around her left ear, obviously were most of the radiation beams are directed.

So, we had a terrific Christmas Break and are back on the treatment roller coaster.  Next week, Susie has treatment every day, except for Wednesday/ New Years Day.  Hopefully, we’ll have the low platelets and red dots under control by then.  In the meantime, we hope everyone is happy, healthy and enjoying a bit of holiday cheer.

Warm regards and happy holidays from all of us… Guy


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.