Diarrhea and cramps … ? GVHD
After we finished the drenching fluid removal last week, Teri began to scrunch over in spasms of abdominal pain around the clock. Shortly after, her stools turned watery. She was seen as an out-patient on Tuesday and received extra fluids, albumin and K+. However, the cramps, urgency and diarrhea continued her misery, day and night, and she began to get dehydrated. I contacted Dr. H. and he arranged for an unplanned visit to the Day Hospital where she received IV fluids, albumin and also methylprednisolone (steroid) for possible graft-vs. host disease (GVHD) and metronidazole for possible Clostridia difficile (difficult) a bacteria that is selectively enhanced after prolonged antibiotic usage.
Today, she seems a bit better and only awakened twice last night to go to the bathroom. When queried today, she even responded to Dr. H. “I feel better.” To which he responded “That’s the first time I’ve heard that in 2 months!”
Right now, she is undergoing a sigmoidoscopy to obtain biopsies to determine if there is evidence of GVHD now that the C. difficile toxin assay is negative. She was initially terrified reliving her ordeal in the MICU on a ventilator from complications during her last endoscopy. Dr. H. and I calmed her by explaining the low risk (she’s heard that before), avoiding the airway and brevity of the procedure.
We had hoped to dodge the GVHD bullet but it appears not to be, knowing Teri’s track record. GVHD occurs when graft lymphocytes from the donor cord stem cells recognize Teri’s host intestine as foreign because of the imperfect match, and attack it, causing damage, inability to absorb nutrients, and voluminous diarrhea. However, Dr. H. is anticipating that this will be a milder version of another potentially treacherous mountain climb. The silver lining is that those same graft-attacking CD4 lymphocytes can also direct their attention against the recalcitrant BK virus that continues to cause kidney and bladder bleeding that has lasted 3 months to the day today.
Messages from Dr. H.
This week we saw Dr. H. three times, once in clinic and twice informally in the Day Hospital. He gave Teri many messages.
“Teri, look at all positive things that are happening – your marrow is working! We don’t find any more cancer!”
“There is light at the end of the tunnel.”
“You are so close to recovery.”
“This is just a bump in the road, the big picture looks good.”
“You will see Jack graduate from high school.”
“You’ve got to begin to think about the future.”
“Teri, why are you so sad? What can we do to pick up your mood?” Teri: “It’s been too long.”
“Teri, you need a dose of [grandson] Jack as soon as possible.”
“In my 15 years as a oncologist/BMT specialist, you have had the most difficult case – the most complicated course!”
“Teri, I never give up when there is a ray of hope.” Teri: [tears]
I asked Teri today what she recalls of what heard of last three days conversations. She said, “Dr. H. is happy [for me].” She is processing some of the good news despite being mired in an endless quicksand of complications.
As I processed the Dr. H’s comment on Teri’s penultimate clinical course, several thoughts percolated up. You never ever want to be a subspecialist’s worst case, especially not an oncologist’s. It is not a distinction to be proud of. However, that statement validates Teri’s immeasurable pain and suffering, as if it needed such. On further thought, knowing that Dr. H. has lost numerous patients to AML, that statement also implies that death may have been an easier course than Teri’s.
Family
Anita, Henry and Simon, Teri’s second oldest sister, husband and oldest brother from CA, that is the elders of the Ho family, formed a SWAT team to cook, clean, fix, sharpen, and organize our place. Given Teri’s ups and downs, they had less time together than planned since she was in the Day Hospital 3 of the 4 days they were here. They gave massages, but kept forgetting my turn. They made oh jia, a family favorite made by Teri’s mother, comprised of ground pork stuffed between two thin cross sections of lotus root, then battered, and deep fried. Yum.
We just got word that Jack will be driving up on Tuesday! Hey, hey!
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