Stable MRI, seizure control, and dermographia

We saw great results with Susan’s four-week MRI today – continued tumor stability and the evidence that her six cycles of Temodar were nicely effective. Dr Nghiemphu continues to be concerned that the onset of Susan’ seizures last month is the leading edge of more tumor growth, so we’ll be back for another scan in six weeks. Her October scan is our new baseline for comparison for growth – October shows slight regression vs last May, while today’s scan shows stability vs October.

Meanwhile, we updated the neuro-oncologist with Susan’s status on Keppra + Vimpat for seizure control. We haven't noticed any seizures since discharge from UCLA four weeks ago. Dr Nghiemphu figures Susan had been having sub-clinical seizures for some time before they became noticeable, which would account for her increased confusion over the many weeks leading up to the cycle that erupted last month. The news is good now though: tumor stability and seizure control.

Finally, we shared with Dr. Nghiemphu the results of Susan’s visit to an allergist last week. It was quite a process of discovery, and another view of the medical role of problem-solving. Dr Schoendorf is a veteran physician who quickly got to the point when walking into the room: “How can I help you today?” After I described how Susan’s skin had broken out within 30 hours of a chemotherapy dose last August and that it had persisted mildly pretty much every day even though chemo was suspended in October, I said we wanted to find out if she has some other drug allergy.

He said we might be frustrated to know there’s no blood test to check for drug allergies. He then pursued a routine of questions about changes in Susan’s diet, clothing, bedding, soaps, etc. There were none. When I described the rash and welts that develop, he pronounced that she has hives. Now we were getting somewhere. Then he said we might be frustrated to know that 95% of the time we don’t know what causes hives. When I mentioned she gets the hives near the collar of her nightgown, from the folds of the sheet under her back and so on, he had a hunch.

He pulled her sleeve up and gently scraped Susan’s forearm with his pencil eraser. Instead of having little reaction, it got “hot” as we talked, becoming reddened and more defined, leaving a perfect trace of the eraser on her skin. He pronounced that she has dermographia. It literally means “skin writing” and happens when cellular changes in the skin cause histamines to be released without the presence of natural antigens to counter them. He said the dermographia is what’s causing the hives. Now we were really getting somewhere.

Then he said we might be frustrated to know they don’t know what causes dermographia. I wondered whether Susan reached some toxicity level from chemo that triggered it initially. He said there’s no way to know that. The condition comes on spontaneously and can leave the same way. Or not. With the cause unresolved, we focused on treating the symptoms. I’d been giving her Benadryl (an antihistamine) each morning and evening; but he doesn’t like its short-term results and side effects like drowsiness. He recommended Allegra since it’s taken once daily and has fewer side effects. She’s had the Allegra for a week and no more hives, a good thing.

Susan’s allergist event was another border skirmish aside from the larger war of brain cancer, but has some similarities. We know it’s there, but we don’t know why. We can’t cure it, but we can try to allay the symptoms. Having already made peace with not knowing why, we’ll just get on with life such as it is in brain tumor world and dermo-graffiti land. We remain thankful to God for his goodness and faithfulness in all things.

Home again at last

We’re so thankful to be home again at last after a blur of a week and glad to ring in the New Year in the comfort of home. We needed an extra day or so for the neuro team to be confident that Susan’s meds were properly arranged. Once she was off Ativan and seizure free for a full day and then some, she was discharged Sunday afternoon.

We’ve shifted to home care, her first shower in over a week, and sleeping through the night without full-voiced staff coming in to take Susan’s BP or check her blood sugar. She’s already gained strength amazingly for having been bed bound, but is still a fall risk. She’s chipper, chatty, and the right amount of sassy. I’ll keep a close eye on her through tomorrow and make sure she has stand-by assistance and alert eyes for seizures.

Susan and I would like to thank everyone who has lifted us in prayer and provided support for us not only through this episode, but for the past 5 ½ years. Our gracious Lord keeps providing for us in every way, sustaining us with hope and peace for this life and the next. We continue to pray for Susan’s recovery at home and for a favorable brain tumor update in three weeks.