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We went to the cancer center and his lab draw showed his white blood cell count had shot to 19.2. Normal count is below 11 so we were concerned.
Lenny, however, wasn't worried at all. He said it is a side effect of the steroids and is to be expected. Willie has been having terrible gut pains since Wednesday night and Lenny thought it is the GVHD acting up.
"Can you please test him for C. Diff?" I asked. It was a thought that came to my head a few days ago
that I haven't been able to shake.
"I don't think it's C. Diff." He said with a slow shake of the head. "He doesn't have any of the symptoms. Unfortunately this is just part of the GVHD and we're seeing now that it may be worse than we thought. We also can't decrease the steroids today like we discussed until this is taken care of."
"I just don't think it is GVHD." I debated. "Last time he had C. Diff he didn't have the classic symptoms and I feel like that is the problem again."
He stared me down for a moment before slowly nodding.
"We can test his stool if you want, but I don't think it's the problem."
I thanked him and we moved on to discuss diet to relieve his gut pain. He suggest moving Willie to BRAT diet which is comprised of bananas, rice, applesauce and toast.
"I can't do that." I said, trying not to sound belligerent. "If I put him on that diet his blood sugar will shoot through the roof."
"Oh yeah." Lenny said, scratching his head. "I'll have the dietitian come in and talk to you then and you guys can figure it out."
It is not Lenny's job to know the inner workings of nutrition so referring to a dietitian is exactly what he should do, but I was annoyed by the suggestion. I have the same schooling as any dietitian with one mild difference: I couldn't afford to do a 6 month, non paid internship after I graduated to qualify for the dietitian exam. Perhaps my annoyance is motivated by pride since I am a certified nutritionist, but I have a firm grasp on my husband's diet and don't need to be told what to do by a government trained diet counselor who knows nothing more than the food pyramid.
The dietitian that came to see us was the same girl who had visited us when we were inpatient. That previous visit had gone poorly since she spent the entire time trying to tell me that there is no such things as powdered pea protein which does, in fact, exist. I had a bad taste in my mouth after that exchange so I was less than excited to see her yesterday.
She came in with a fury and began drilling me for what Willie is eating. I responded in dietitian-speak, reporting his meals in terms of how many carbs, fats, and proteins comprised the meal instead of the actual food. She wrote down the items feverishly and pulled out a calculator.
"He is not eating enough calories." She reported.
"I'm fully aware of that." I replied. "We are doing what we can and his calorie intake is improving daily."
"He needs to start drinking the high calorie shake." She said. This is the dietitians solution for everything. I learned this in the years I ran the nutrition department at a skilled nursing facility. They are trained to get calories into their patients in the quickest and easiest manner which involves forcing a patient to drink a high calorie sludge that is made from corn syrup and soy bean oil. The main ingredients are toxic to the body and the last thing that an immune compromise patient should be eating.
"The shake has far too many carbs." I replied.
"And what's the problem with that?" She shot back.
"We're trying to control his blood sugars with diet and that means carb control." I explained.
"That's why there is insulin. He will start taking the shots today and then he can eat a BRAT diet and drink the high calorie shakes."
I have a problem with everything about that statement. I see no reason to give my husband shots of insulin just so he can eat a high carb diet.
That to me, is insanity.
"We are not interested in using insulin." I explained. "His family has a history of diabetes and he is high risk for developing it."
She made a dramatic display of grabbing her hair with both hands and rolling her eyes toward the ceiling.
"Insulin does not cause diabetes." She yelled.
We stared back at her, speechless at her childish display.
"I never said that it does." I said after she calmed down a bit. "But injecting insulin can damage the beta cells of the pancreas which causes the pancreas to stop producing insulin like it should which leads to diabetes."
Now she was speechless.
I doubt she knows any of that.
"You don't understand how insulin works." She retorted. "It is used to help lower his sugars so he can eat a high carb diet."
I could see the debate was futile. There is no need for him to eat a high carb diet. That is western medicine thinking and everything I learned in college about nutrition as well. It has only been through my own study and practice that I have learned the follies of the Standard American Diet which appropriately can be abbreviated as SAD. I can't blame the dietitian for preaching what she learned in school, but I can blame her for treating us like we were dumb.
"Fine," I said. "You can go ahead and give us the insulin and I'll use it if I feel it is necessary."
She nodded and smiled. "That is the right thing to do."
She left the room and I fell apart.
"I can't do this anymore." I cried to Willie. "I feel like they are pushing us into a corner and forcing insulin on you and I can't handle it. I refuse to give you shots in the belly multiple times a day. Its' something I just can't do."
"You can't be upset about this because I am upset about this and only one of us gets to be upset at a time." Willie replied and I couldn't help but laugh at his reasoning.
"I'm sorry, baby." I said, wiping at tears. "I just felt so attacked by her."
"She did attack us." He validated me. "But you know what you're doing so let's keep doing what we're doing and see what happens. I'll eat whatever I have to, I just want to feel better."
He held his gut and rolled over, obviously in pain.
I hated that he had to console me when I should have consoled him.
We left the cancer center around 3:30 PM and got a phone call from Lenny at 5 PM.
"Well you've done it again." He said. "He has C. Diff, just like you thought. I don't know how you do it. I need to just give you a job here." He laughed through the phone and I sighed in response.
"What a relief." I said.
"Yes, it is. I agree with you now that it is not GVHD and that his gut pain is from the infection. You can go ahead and lower his steroid dose and we'll start antibiotics for the C Diff tonight."
I'm am so grateful for this tender mercy. I don't take any credit for finding this infection. All the credit goes to a loving God who has guided our footsteps and inspired us along this curious path.
I got Willie the antibiotic last night and he took the pill with a smile.
"The Flagyl is going to work." He said. "I feel better already!"
Of course, he was joking, but he did actually feel better last night and is having a much better morning today. I hope this is the beginning of an official climb to the top. We're tired of this up and down stuff!
Happy Weekend to All!
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