Holy Cow!!!!
How do you handle a drunk that is hyped up on alcohol, steroids along with a noon appetizer of Ativan? You just roll with the flow and hope to get a little bit of sleep.As soon as we arrived at 8:30 a.m. in Infusion yesterday, we were advised that Carmustine has a lot of alcohol so we should expect Poppy to be drunk must of the day. He had already taken his daily dose of five Dex (steroids). AND, to keep him from getting nauseated from the chemo he was given Ativan. Soooooo, pretty much by 10:00 a.m. he was on the drunken path.
During that time he had me going to the snack bar for coffee, snacks and then lunch. The snack bars in the cancer center are closed on the weekends so I had to journey over to the hospital by foot, but I love to walk at a fast pace, so it was a break for me from sitting all day. But, the Dex was making him pretty bossy about the hunger time frame.
I did take the opportunity Friday and Saturday to visit ICU to see Bill and Kim Goodness. The Kansas Highway Patrol trooper. He wasn't conscious as she and I visited, but it seemed somehow he felt my presence. She and I shared some similar stories and I was able to see some of the same ICU nurses and doctors that took care of Poppy in July and August.
They were getting his levels up so he could go home for a peaceful goodbye with his family. Within an hour yesterday his family and friends collected over $7,500 for med flight to take him home. Today I heard in 24 hours they collected $24,000. Sad to say, he made another journey home. He is now in heaven. She was alone with him when he passed.
I cried much of the day while we were at clinic, because as we spoke yesterday I relived some of the feelings I had while Poppy was in ICU. Not knowing if he would come home. The nurses in Infusion knew Mr. Goodness very well, so there was a heavy sadness there today, too. Please keep his family in your prayers.
The nurses were quite surprised that Poppy tolerated the chemo from yesterday. They told us the Carmustine was very massive. Then they did a piggy back on the Etoposode and Cytarabine. Today they couldn't do a piggy back of the last two. They had to be single, just as they will be tomorrow and Tuesday.
Today his RBC (red blood count) looked good. His platelets, WBC and hemoglobin dropped. Hemoglobin was 7.7 so he had to have blood. Not out of the ordinary. His CRP (we call that crap because it means inflammation/infection) was elevated to 10 from 6 yesterday. Still not bad because his WBC is dropping. So no worries thus far.
Wednesday he will have another massive dose of some strong stuff -- Meophalan. We were warned today and reminded that he is on some pretty hefty stuff. He was especially warned because since the weekend is over he is informing them he will be driving himself to/from clinic. I had to recruit some higher up RNs today to tell him that. One was even a male. They explained to him he could get there and his BP could drop OR he could get real sick or nauseated from the chemo and they would have to give him the Ativan and he wouldn't be able to drive. So, I will be driving him in the mornings to clinic and drop him off and head to work myself. Pick him up around noon and take the rest of the day off.
THEN, we get home today and he informs me that when I get him home at noon, he can change and take himself into work. Here we go again. I remember this soooooooo well from his last transplant. Especially when our helpers would escort him, but he would drive under the influence of the Ativan. They would call me and tattle on him and eventually they didn't take him anymore because he would railroad them. I don't like this part of the steroids. It causes a lot of friction and a lot of worry on me.
We got half way home yesterday and I realized they had not given him his Lovenox (blood thinner gut shot). Just as I mentioned it to him, my cell rang. It was his chemo nurse. We finally agreed I could give him low dose aspirin instead of going back. Chemo can cause clots. That's one of our regulars. So I was good with that.
He has a history of low BP so he is on a med to increase it. He's been checking it regularly. It was sure taken a load off me. We are sharing the "caregiver" role the last two months. He seems more attentive of me. We both realize how much of a toll the last few months have been. Anyway..... ONWARD. Enough of the mushy stuff.
We got a new machine that keeps his history. It's very dependable/correct on it's readings. He has been taking this script for two months. Yesterday his BP was checked very 15 minutes during the Carmustine. Once was up to 125/ .... I just look at the top number for some reason.. Kinda compare it with me that is always right on and consistent. I look for the consistent. 120/80. His use to always be 97...Normal for him. Sooooo, the low yesterday was 91/.. But, it hopped right back up. So they increased the pill from twice a day to three times. So, I ask... morning, noon, bedtime?. Because we do morning and bedtime. Wow... we got some frowns on the bedtime. Sooooooo, remember this ALL you kids.. DON'T take BP meds at bed time. Ever.. It's breakfast, lunch, dinner. When he took his BP last night it was 144/56... He was soooooooo happy and thought the nurses would be proud, but I was frightened since he had taken the last two within just a few hourse of each other.
Soooooo, when we got home we mis-calculated and he had one at 6:30 p.m and another at 9:30 p.m. We some very engertic yesterday and did a LOT of chores around the house. He was like a fly. If I could have made a slow motion viodeo, I wouldn't have been able to capture him. He was that quick. Hand cleaned all the windows on my truck and his. Then he did mine again today, TWICE. Once on the way out at 8:00 a.m. and then when we got home this afternoon at 3:30 p.m. And, touched up a few spots when we retuned from dinner at 6:00 p.m.
Last night was rough on me. I got in bed an hour earlier than he. My body ached so bad from being in limited positions yesterday and all the walking. Let me remind you... I so enjoy walking... I smile at everyone my eyes come in contact with. I love this place so much, and we both see so many familiar faces. He has so many compassionate friends, doctors and nurses.... I just can't put it into words. It comforts us to be there. I believe all the patients there would share the same....
We met a couple today from Ohio. They were a God-sent. They were in the cubicle across from us. We hear their labs and conversations. We are all family there. He was diagnosed last year. They have four children...two are two year old twins. What a story they have. That's why I love walking those halls. Maybe I could show them the comfort we feel, they will feel it, too. I guess y'all can tell we both had a topsy-turvy weekend. I'm getting mushy again. ONWARD!!!
I'm gonna wrap it up tonight. I could go on forever sharing with you about the things we shared together. He never complains... Edith (his seven year Infusion nurse) made two trips back to check on us today. She would stick her head around the corner.. She's been through a lot with him. She had been through a lot with Mr. Goodness, too. He sees her and they laugh out loud...
I better get downstairs.. he's into the ice cream... He's eating so well.... I slept on the couch last night. Every time I fell asleep he would wake me up and ask me if I was ready to go to sleep. I finally got up at 1:00 a.m. and said, "I guess I'm not!" We will all laugh about this tomorrow when we share it with the nurses. One in a million side effect of Dex. He had the hiccups today, too. We couldn''t get home fast enough. He keeps hiccupping in front of the Verizon girl today that worked on his phone... (That's another story -- don't get me started)!!!!!
Good night and Love -- Pepper
p.s. I'm so tired, I'm not proof reading this. You're on you own... No complaints about spelling and grammar are acceptable.
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