Saturday, October 29, 2016
Darlazex Day 2
Yes, day 2. Gonna be a long one.
This past week, my all over body pain was as bad as it has ever been. In the middle of the night, it was the worse. We recently did a skeletal survey and we ruled out the myeloma impacting the bones. But every bone and every muscle was hurting. And I'm not embilisshing by saying every one. Hands, toes, legs. Well, actually my back is the only that wasn't hurting. Decent sleep hasn't existed.
Phan's feeling is it's the myeloma and toxicity of all the drugs I've been on. Also, I haven't eaten much this week. Not much of an appetite. Nonetheless, I gained several pounds. When I checked in yesterday, we noticed I had some edema and swelling. I was feeling bloating. So my brain thought, of fuck my kidneys are failing. That would be game changer for me. Huge game chaanger.BUT, we did blood work at hospy. Creatinine is 3.2. That is a great number for me. On the official efr scale, it's out of failure range.
Yesterday, When we took darlazex on to a higher drip rate, I had a bad reaction. Breathing was impacted, then horrible shivers and rigors. Then all my pains were heightened. Not fun, not fun at all. In fact a bit scary. A team of nurses got me blankets, rubbed my painful legs, they called Dr Phan. I got more, dex, demeral, more bendryal and we slowed the drip down. Breathing became easier. Shivers stopped and my pains lessened. That was a crazy ten minutes.
At 8 last night, they gave me an ativan. And I passed the fuck out. Slept like a champ. Didn't wake up once. I can't remember the last time that happened. Sure I was highly medicated but I slept pain free. Just saw the morning nurse. The kicker is we're keeping me on slow drip. I have another 10 hours of infusion. So I'm in the hosiptal for the day. Hopefully I'll get discharged later today. Weekends are tough, hard to find doctors to give discharge notice. Phan said once drip is done, I can go home. He's not on duty, but is available by phone. So later today, the nurses will call him to get the discharge notice.
A few notes: thank god for my port. It makes the administration of all drugs super easy. One nurse wanted to also give me an iv as a precaution, In case I needed more drugs to fight a reaction. But we talked her out of it. Arm IV make the hospital stay a differemt animals. Restricts ability to move, gives a dull pain, my veins are hard to find and don't work so good and I would be left with ugly bruises.We convinced (pressured) the nurse to drop the thought of an iv. It's an important reminder. You, the patient, are the boss. You can ask questions and say no to stuff. Having your caregiver/advocate helps. When you are in pain or loopy or sleepy, you need that support. Scratch one thing. Just got a roomate. Ok, now I am ready to go home. Fuck
The kicker is I'm here for a while. Guess I'll watch lots of college football today. I'm super hungry. I feel good. I'm in the oncology unit, so the nurses are extra friendlly. teamgoldman lives to fight another day.
The MMRF has free weekly webinars on the impacts of COVID-19 on myeloma patients. Register here.