This Should be Interesting
I’m hopped up on pain meds so we’ll see how this update goes. I know some of you have seen updates from Lindsey on Facebook, but I’ll catch everyone up on what’s been going on since the last post. This current stretch is about surviving, which reminded me of an animated video from 1999. You remember 1999 right? Al Gore’s internet was starting to take off. Personal computers were in more and more homes. My roommate Ron was stocking away Y2K water like there was no tomorrow. And this video was produced. By today’s standards it amateur, but back then this was cutting edge stuff. My goal is to avoid the Disco Ball 🙂
Where We Left Off
We last left off on Day +2 where the nausea was bad and the leak in the backdoor was even worse. The good news is the nausea is under control now. I was getting nausea meds as needed (when I asked) but then we switched to automatically giving me the med every 6 hours. That’s made a big difference. As far as the diarrhea goes, that is better too. Previously I had been getting up multiple times a day, heck, multiple times an hour. Once the C Diff came back as negative, I was able to take Imodium to bring things under control. The backdoor is still leaking a bit, but is much more manageable now. Diarrhea is an expected side effect and will probably be ongoing, even when I go home.
Day +3, When I Lost the Ability to Pee (on command)
The big event of Day +3 was getting my PCA pump. PCA stands for patient controlled administration and is what I’m using to give myself pain meds. Throughout the day, the pain in my mouth was getting worse and worse. To the point when I’d try to drink I’d just grimace in pain as I swallowed. I had been rating my pain as 1’s and 2’s to begin with but the mouth sores were creeping up to 5 and above. We of course were expecting mouth sores, so it’s not a surprise. But it’s also not fun.
I started out on 0.2 mg of Dilaudid every 15 minutes. I’m currently on a dose of 0.4 mg now. The good news is that I can drink without wincing. The bad news is Urinary Retention is a side effect of Dilaudid. I haven’t dealt with this before, even though I’ve had Dilaudid before. Basically it means I feel like I have to pee, but I can’t go. The Dilaudid is messing with the signals between my brain and Bernie the Bladder. The good news is that once Bernie is full of it (and boy is Bernie full of it JenSim) then he’ll release the urine. I’m not incontinent so it’s not like I’m peeing on myself. But I do find myself standing for minutes at a time trying to go with no luck.
Day + 2^2 and Day +5
That pretty much catches us up to today, Day +5. Main issues are mouth sores and being sleepy. The pain meds make me sleepy so I spend a lot of quality time in my bed. After losing about 10 pounds I’m holding steady on weight. My mouth is dry most of the time, but that’s because I’m having trouble breathing through my nose. Oh, nosebleeds. I forgot about the nosebleeds. My platelets got down to 8 on Day +4. Normally they are 150-450 and anything below 10 requires a transfusion. They gave me platelets in the morning, but I had a nosebleed in the afternoon. There was a really big/cool clot I blew out, but unfortunately I didn’t get a picture. After the nosebleed they did another platelet count and I was again back down to 8. So this time they sent a double bag of platelets up and that did the trick. I have to be careful blowing my nose though, thus it gets stuffed up and I become a mouth breather.
My Sweet Niece Kailey
Last week my niece Kailey’s school had “dress like your favorite Hero Day”. As my sister Michelle tells it, “All on her own, Kailey came to us a few weeks ago and said she wanted her outfit to honor her Uncle Rob and that he is her hero because he is bravely battling (and winning!) against Leukemia for the second time.”
It’s amazing what might seem a simple thing can lift the spirits. So for hero day, Kailey went to school in a Robstrong T-shirt, an orange ribbon in her hair and an bracelet. Love you Kailey!
And the Powerball Numbers Are:
My whites bottomed out on Day +4. I suppose they could dip down again, but there were up a bit on Day +5. The official measurement was <0.2 simply because they can’t measure below .2. My hemoglobin is holding steady, which is fine with me because it might mean I won’t have to get a transfusion for that.
10/19/15 (Day +3): WBC 0.2, Hemoglobin 12.4, Platelet 24
10/20/15 (Day +4): WBC <0.2, Hemoglobin 12.3, Platelet 8
10/21/15 (Day +5): WBC 0.3, Hemoglobin 11.1, Platelets 24
A Duck Dynasty Prayer
Thank you God for getting me this far. Thank you for helping me to weather the storm. I strive to praise you in this storm for this won’t be the last trouble I face. May I condition myself to rely on you. To build my house on the rock and not the sand. When faced with a choice, may I choose you over and over and over again. Thank you for another day.