It wasn’t a quiet week by any means. Daily runs to the hospital for radiation with someone who is obsessed and stressed about diarrhea isn’t fun. By Friday night I needed a break so John took over.
Good thing too because this update is written by lonely only me at home. All by myself. John and Mathew are at the Emergency Room as I write.
Backing up a little though, to Thursday. Mathew had blood work on Thursday and we invited his Nana to come along to see the Radiation treatment. I’m so glad she came on Thursday because everything went smoothly and Mathew got in early even! The weather was nice albeit a bit chilly that day.
Friday morning I got the call that Mathew needed to come in for a blood transfusion. Not a big surprise as he was getting pale again and his lips lost their colour. I still can’t figure out his hemoglobin level by his freckles as they still come and go at random times but his lips start turning light pink, almost colourless when his red blood cell counts drop. Mathew went in for 11 am and received 2 units of blood before his radiation treatment. His hemoglobin count was 75 and the transfusion is done when it drops below 80.
When that level drops you know his other levels are dropping, so while we were in the chemo outpatient room (the one with the beds) I asked after the other 3 blood counts we like to keep track of. Turns out the platelets were 35, the Leukocyctes were 0.3 and the Neutrophils were 0.0. If you recall that translates to his immune system being non-existent.
Now, just as a matter of habit, wherever he has to wait we ask the people if anyone is sick. So far at the Radiation waiting area no one is ill other than what they are being treated for, of course. We always explain why we ask and if someone were ill then Mathew would wait somewhere else. He’s becoming quite the mascot I think. He asks everyone how they are doing; he wants to know how their treatment is coming along and what their symptoms are. He always waves hello and wishes them good luck when they leave or head off to treatment. He gets away with the questions too! So far he is the youngest I’ve seen in the waiting area, by far. I’m sure there are other young adults there… maybe at a different time of day.
On Friday I was exhausted by the time we got home. Listening to his constant fretting about diarrhea and pain, etc, etc, drove me nuts by the end of the day. I retired early and John took over, thank YOU!
This morning Mathew’s Oncologist called us at home and requested Mathew get blood work drawn at St. Joe’s. It is the other hospital in town and it has a small iv day clinic. John drove off with Mathew and they returned right after; with counts like that Mathew isn’t going anywhere but straight home.
Not long after that Dr. Burnell called us again and this time asked us to take Mathew to the ER at the Regional for a platelet transfusion. Seems his platelet count went from 35 to 18 overnight. The iv clinic at St. Joe’s can’t transfuse platelets so back to THAT ER again. Bless Dr. Burnell ~ she called the ER in advance, alerted them to our last visit and uh…um… said something so bad things (like this mother freaking out) don’t happen again. I LIKE this woman!! Remember this is the same ER from that portapotty nightmare a few weeks ago. Furthermore Dr. Burnell isn’t the attending this weekend so she used her own time to follow up on Mathew rather than leave it with the on-call Oncologist.
So, off John went with an unhappy Mathew. I stayed behind to get groceries and just “chill”. Apparently I was rather cranky this morning. Or something. They probably exaggggerated my grumpiness!
Zoom forward to the present time…almost 10 pm. Mathew spiked a fever while there which means he is neutropenic. I hate that word and dread what it means. It means he has an infection somewhere and ~ oh YES: He’s ADMITTED to the hospital! Again! Probably for another freakin’ five days!! He can’t get the neupogen shots to boost the production of his white blood cells because the daily radiation just kills it. The doctors are extra cautious because of this… but temperature and zero counts means trouble. His body cannot fight off an infection. There was already one blood culture done and apparently a second one is being done now too. I noticed today that the skin around his G-tube changed overnight. It is now an angry red and looks ready to ooze nasty stuff. The last 2 times he was admitted that G-tube hole had a staph infection. The ER doctor told John he doesn’t think that is where the infection is. I politely disagree and think they should culture that area as it has a bad track record. In addition to the change in appearance the tube is also causing Mathew a lot of pain, another indication all is not well there.
So we find ourselves in a familiar situation all too soon. Mathew was first put into an ER room with no bathroom (oh yeah, singing that ol’ tune again from a few weeks back!) but John somehow managed to persuade them to move him to a room with his own bathroom. We were deeply concerned that if he had to use a common bathroom then someone with the flu or pneumonia or other contagious condition could easily transfer germs to Mathew and that would be deadly for him.
John comes across calm, quiet and commanding. He probably got everything he asked for because they were so relieved I hadn’t showed up again, wink, wink. You never know. Nothing like a little hysterics and foaming at the mouth to make your spouse look like a saint. You can thank me anytime, dear.
You’ll probably find me at the hospital tomorrow morning and over the next five days. That seems to be the standard protocol for neutropenia.