A see-saw week

The aftermath of Susan’s bleed and clot (officially, hemorrhage and hematoma) has been tough for her. I did a little research and realized how serious a bleed can be. Sometimes caused by injury, stroke, or aneurism, or a tumor in her case, the symptoms include what she experienced – weakness on one side of the body, fatigue, confusion, lethargy, nausea and fever. It can also be fatal. I also learned a bleed kills brain cells. We don’t know the extent of any real damage from Susan’s bleed, but it’s made its mark. The best way I can describe it is that she was knocked down a few notches and seems more confined to margins of frailty. She’s not bouncing back as quickly as before and needs lots of rest. A difficult spell may persist for a day or more instead of a morning or afternoon.

Understanding Susan’s “new normal” or baseline condition since the bleed occurred has taken some adjustment and has led to some alarm. Last Monday, she resumed a vigorous occupational therapy session that involved a couple of hours of activity and exercise. Tuesday she was out of it and could barely function. Was the bleed progressing? Dr Nghiemphu said Wednesday the only way to know would be another scan, so I scheduled a CT scan for Thursday. Meanwhile, Susan had improved a little and had another o/t session on Wednesday. Thursday she was pretty tired again. The ebb and flow of her condition and not a continual decline led me to believe the bleed had not progressed, but that therapy was making her extra tired for an extra long time. The scan results on Friday bore that good news, showing no active bleeding and the ventricles beginning to resolve. The doctor commented again on how big the bleed is. Susan’s MRI tomorrow will reveal more; but right now Dr N does not believe she’ll need surgery and will continue to have ups and downs until it resolves completely.

Saturday brought one of the downs with severe left leg pain, concern about another blood clot, and some instructions from Dr N. Susan could hardly walk due to pain and needed to use her walker again for stability. Some meds gave relief and local heat seemed to resolve it overnight. Sunday brought an up day as we were able to employ a couple of well-placed nap times and manage going to church and having a birthday brunch for Susan’s mom at Knott’s Berry Farm. Susan did well all day.

Susan’s condtion has resulted in the rehab team’s recommendation to discontinue treatment at this time. She’s presently not able to handle the several hours of daily activity they require for aggressive therapy, so she’ll step down to a less strenuous level through a home health agency. I accept that it’s a better use of everyone’s time and will preserve the remaining number of hours insurance will cover this year for Rehab Without Walls. Perhaps she can restart with them again in a few months.

I asked Susan to be my Valentine on Saturday – she said yes. I was a little worried there. She said I had asked nicely and she’d consider it. Then she accepted. I was glad since I’m not sure what I would have done with the flowers and nightgown otherwise.

With over a year and a half into this journey, life continues to be surreal when I consider it. Sometimes it doesn’t seem possible that Susan has a malignant brain tumor, besides the surgeries, the treatments, the complications, the hospitalizations, the mini and major crises. And sometimes it doesn’t seem possible that this is normal life now. It helps that her prevailing attitude is gracious, hopeful, upbeat, and playful. The uncertainty of the outcome is greater than ever; but the reality of God’s provision and faithfulness has never been clearer. We could not hold up without Him.