I thought I would do a weekly update during treatment with a recap of all that went on. I’ll do little quips in the Facebook group during the week.
He began on April 24th, so he’s 2 down of that. The first was a double dose, so they let it set for a week before starting radiation. He’ll have 8 weeks total of it. The medicine he’s getting is Erbitux. The main side effect is a rash. Well, it wasted no time in showing up! By day 6 he noticed a little, mostly redness. By day 10 the little blisters, which look like white heads, showed up. They told him not to bother them, they aren’t white heads with puss, they are white blood cells. Most of them do pop in the shower, but he’s supposed to be very gentle. By yesterday, it is all over his face, chest, entire back and hands. His hands itch like crazy, not constantly, but when they do it’s very challenging. He’s tried a few things to stop it, but no success yet. We got a new cream today to try. Thankfully, the rest of the rash only itches if he gets overheated or sweaty. He’s been told to avoid the sun at all costs. Wide hat, long sleeves even for brief outdoor activities.
During his chemo, which runs for 3 – 4 hours once a week, he sleeps, restless, but sleeping in the recliner. They dose him with benadryl first and it knocks him right out. I take a walk, handle scheduling appointments, take care of bills, read, and poke him when his snoring gets too loud. I do a lot of that. 😉
They have to watch is Magnesium levels so every Saturday he has to have his blood test. So far so good on that. Funny, for someone who has cancer, his labs are beautiful. Ha! Seriously, his first round, not one thing was outside the normal range! The second time I could see things moving up or down, but nothing significant.
Time will tell if he will have any of the other side effects from the chemo meds. They did tell us that the rash is a good indication that the medicine is working, so we’re pleased to see it even though it’s unpleasant.
He is 5 treatments down out of 35. He goes 5 times a week, Mon – Fri. This is pretty quick. They gave him a card to scan so he can check himself in. We only wait about 10 minutes, then he goes back. I’m not allowed back so I either take a walk or read. He is back there about 15 minutes, then checks in with the nurse and he’s done. Monday and Wednesday are the quick days. Tuesday, he does radiation and chemo so that’s a long day. Thursday and Friday he also sees a Dr so those are also long days.
Side effects of radiation are starting to appear. By day 2 he was feeling some tenderness when he coughed which was new. By day 4 he was feeling pain that ibuprofen no longer relieved. They prescribed Vicodin for now. The pain feels like it’s in his ear, but his ears are fine. This pain has been there all along and is probably from the affected lymph nodes crowding that area and nerves so much. As radiation causes inflammation and irritation, that swelling is causing more pressure.
After 5 rounds of radiation he has started to feel his taste getting wonky. Sweet things aren’t tasting good. They don’t taste bad, but aren’t as pleasant as before. His morning smoothie wasn’t enjoyable. By Sunday he had a hard time tasting salty foods. He has always told me I use too much salt so when he asked to add salt to dinner that I already thought I’d overdone that salt on, I was like, shoot. Nothing is tasting gross yet, but they all say it will get to be that way in another week or so. He’s just finding less taste enjoyment in things.
He has noticed an increase of phlegm and coughing, sometimes to the point of gagging. I can only imagine how annoying it is to him, because it’s annoying to me. 😉
Both Chemo and radiation cause fatigue and I can see that. We talked this morning about that and it seems that Mondays are his best days. The weekend off of radiation and getting extra rest must be helpful.
I’ve been asked by several people (some rudely if you can believe that) if I have to go with him every day. The short answer is no, I don’t HAVE to. The long answer is, I GET to. My kids are either at school or work during that time. I get to be there as moral support, water drinking reminder, carryer of all the things, blanket adjuster, information bank because I literally remember every thing, every appointment and name and what was said. It’s weird. When someone asks him a question he just points at me. I’m happy to carry that load for him so he only has to focus on being a good patient. I asked him about my going every day and he said it means a lot to him and he’s so thankful. He said that even though it means a lot on the calendar, it’s means even more to him.
When we sit there I can see him. I can see him shift from the confident and invincible version he likes to be, into the one who is facing something he can’t fix. Sitting in that waiting room, I hear his breaths become sighs. From swiping his card at check in, to being called to the back, I see his stature sink a bit. His shoulders drop, his face clenches and he fidgets. He always says he’s okay. But I can see he’s struggling. He knows what’s coming. He knows the pain is going to get extreme. He knows that soon the rash and poor taste buds are going to be the least of his worries. Every time he sits in that waiting room, I can see the reality strike him again. I’m there for that.
I’m thankful for all the support, prayers, meals, donations, rides for Robby, texts and cards! It all means so much! We know the hardest is still ahead but we know we don’t go it alone, and all the hands and feet of Jesus remind us of that in very practical ways!