The New Normal

It was a little different leaving Cache Valley today since this is the first Monday we haven't headed to Salt Lake prepared to check into the hospital.  In fact, this is the first week we have purposely planned NOT to check into the hospital.  (But since we all know how our plans go, I packed everything we would need IF we did need to go to the hospital.)

 Everything Brendan needs to do this week should be outpatient.

Brendan and I had to stop and enjoy the view for a minute.

 We didn't have to be to Salt Lake until 11 a.m., but this is what we ran into in Ogden-- A five mile stretch of I-15 that took an hour to get through.  Two accidents shut down all three lanes of traffic for awhile.

 Getting to the Huntsman Cancer Institute an hour late threw everything off schedule.  They couldn't fit us in until 1:30 p.m., so we left Huntsman and went to Brendan's oncology clinic appointment at Primary Children's hospital first.

Blood counts had to be checked today so they had to access Brendan's port.  The anxiety and anticipation keeps getting the best of him.  

 Just the thought of them pushing that needle into his chest causes Brendan some shortness of breath and some dizziness.

 More vitals checks. . .

Brendan's blood counts look perfectly normal today.  His sodium is back up, so we don't have to give him any more of that.  With the chemo last Monday, his blood counts should be dropping later this week. Since they look good now, he won't have to have them checked until next Monday again.  That means he won't have to get his port accessed again for a whole week!

After clinic, we rushed back for radiation -- they were waiting for him.  More vitals checks, weight check (63 lbs - same as last week, but down from 2 weeks ago), and a warm blanket while he waits.  

 Headed to the vault. . .

 Day 10 of 33.

 Brendan was in especially good spirits today.  He joked with the doctors and the radiation therapists.

 There was quite a bit of extra measuring and adjusting today.

 Today we met with the radiation doctor.  He was glad to see Brendan still hadn't lost 10% of his body weight yet.  But he wasn't happy with the NG tube--nasogastric tube (feeding tube in his nose that goes to his stomach.  (Not to be confused with the NJ tube which goes into the small intestine)).  Dr. Poppe wants a feeding tube directly into his stomach.  He feels that since they are radiating his nose, it will soon be irritated and sore and the NG tube will have to be taken out.  He also knows there is only a small window of time between chemotherapy treatments where Brendan can have surgery to put in a feeding tube-- (because surgery can only be done when his blood counts are high enough).  With another round of chemo coming on December 7th, it will be crucial Brendan can be fed enough during the last three weeks of radiation-- which will overlap his next round of chemo.

When Brendan came back from radiation, there were no more smiles and no more jokes.  He just wanted to lie down and be left alone.  He said he had a headache in his left temple.  The middle of his face (over his sinuses) looked red like it was sunburned.  He said he was too tired to walk to the car.  So we took a wheelchair--and another warm blanket.

With all the delays and changed schedules, we missed school tutoring today and physical therapy.  Brendan didn't mind one bit.  He was glad to get to Farmington and play with the dog and his cousins.  He had more energy for a little while, but tonight he has been nauseous and tired again.  He fell asleep on the couch and it took some time to get him hooked up to his food and get him to bed.  Tonight the oncology doctors want him up to his maximum goal for his feeding tube nutrition.  So he was given some anti-nausea meds and put to bed.

I knew the radiation had a cumulative effect and he would feel worse and worse, but today there was a big difference in how he felt after radiation.  I also saw a difference in him as we headed to Salt Lake.  I joked with the doctors about how he is fine when the car is driving north, but nauseous and tired when the car is driving south.  While it sounds funny, there is a lot to be said for the mental conditioning he is going through.   Even I am beginning to feel the effects of Mondays and dread having to leave home and return to the hospital and clinic.  Fortunately, this is a short week and we are both looking forward to returning home on Wednesday (after radiation) for a long weekend break!