So I’ve been in isolation a week now, not having stepped foot out of the room in that time frame. Still going strong in here. Don’t really mind the isolation time, it is rather relaxing and peaceful. One the daily room cleaning is done, then the rest of the day is more relaxing and peaceful because you pretty much know when the rest of the interruptions for the day will happen. The best part of the day really is when the nurse comes in to do the nightly blood pressure and temp check because then you really know nobody will bother you again till morning, unless of course you need something, then you can page the nurse.
So my excitement for the day, hair loss. So I mentioned yesterday that today I may try a trick that a former patient who just left today actually passed on to me. Apparently it’s something that the patients keep recommending to each other, but nobody really ever talks about. So for helping speed up the process she recommended taking lotion or moisturizer and rubbing it really good into your head, deep into the follicles. Put on a hairnet, let it sit for a few hours, then wipe down the head. Then finish it off by cleaning it up with the alcohol solution and gauze. So I decided why not try it, and it actually worked rather well and it ended up removing about half of my hair. I may try it again tomorrow, depending on how my hair loss goes tonight. I am not posting a picture of my actual hairloss yet, but here is a pic of me decked out with my lotioned head and hairnet this morning. But hair is still falling out like crazy, so I’m stuck wearing a hairnet, just to contain the mess.
Now onto my actual day. I was up around 4:00am this morning, just couldn’t sleep anymore, it’s getting light out earlier and earlier and it was raining super hard at that point in time. Actually it’s rained pretty good most of the day and a few times the rain was quite heavy and intense. Which is good, keeps the room cooler. So I started out my day like normal, eating a cereal bar and protein bar to get me going for the day. Some coloring and chatting with my hubby on facebook. Waiting for my first interruption of the day to happen.
Nurse was later than normal for me this morning, normally it’s closer to 6:00am when I get busted in on, but it was around 6:45am this morning instead. She wasted no time, she was doing my blood pressure and temp check while drawing my blood, then got me hooked up to my morning steroid infusion and then she was on her way. But another patient was doing another round of stem cell collection again today, so I’m guessing that slowed things down, that takes precedence over other things. All good though, not like it changes the day much anyways.
Now onto the topic of food. I try to cover both breakfasts in one blurb, just because it’s easiest and the second one is never really exciting or different from any other day. Breakfast #1 showed up around 8:40am this morning and was an egg-white square, white tapioca type porridge, bread, tea and sugar. Not a bad breakfast considering what sometimes shows up. I ate the food and made up some garlic bread to go with it. Added the sugar to my growing stash and called it good. Breakfast #2 showed up around 11:40am a bit later than normal for me. It was the regular 2 cooked apples, chunk of beef, baby yogurt, and cup of plum tea type mixture. Now before isolation I never touched the apples, but since isolation where we have to zap all our food in the microwave for 20 seconds before eating it, I have started eating the apples out of desperation for food in my steroid induced eating rage. And I determined that the zapping of the apples in the microwave makes it easy to remove the skin and then you can just sorta eat them normally. I mean I supposed you could put cinnamon on them as well to spice them up, but I don’t mind them plain. They are not super flavorful, but at least it’s fruit and something to eat…..
Dr. Fedorenko made his rounds a bit earlier today than he has been. 9:40am on the dot he showed up in my room. He did the normal vital checks, all good there, then we got down to business. He broke out his paper and started writing down my stats. Good news for me, Leukocytes almost tripled overnight and are at 0.43 now, he says that is very good and right where he wants them to be for me. My platelets also jumped a fair bit, also good. The good news is that he feels my numbers will take off overnight and he gives me an 80% chance of leaving Isolation tomorrow, but for sure I’ll be out on Saturday. So here’s hoping for tomorrow. If that’s the case, I still won’t be able to go outside yet, but I will at least be able to leave my room while wearing a mask and roam the hallway or go to the lounge and chat with other patients. Unfortunately it also is looking if I spring from isolation tomorrow, I may be the only one from my group to do so, so I’ll be a bit lonely with not a whole lot of other people here to interact with. Another pro if I get out tomorrow is I will start being weaned off my steroids and will have my final Rituximab infusion on Sunday and after that the neck line gets pulled, and really that is the exciting part. So fingers crossed… Although really another day in Isolation wouldn’t be too bad, I am not minding it.
10:00am Olga came in to do my room cleaning, that was my excitement for the day, she was quite chatty and is quite good at English, we had quite the conversation. While she was still cleaning my room, another nurse did come in and change my neck bandage, it didn’t technically have to be changed because it was still in good shape, but the tape was driving me crazy, so Dr. F had the nurse change it for me. Unfortunately I’m stuck with the same type of tape again, but this time it isn’t bothering me as much, so hopefully this one stays perfect and I won’t have to undergo another one while I’m here, this one was quite painful as the nurse used a lot of alcohol spray, so it’s really not something I enjoy having done, it’s more as a last resort for me.
I spent most of my late morning, afternoon, and evening cross-stitching today; was somewhat relaxing and then chatting with people on facebook, that did take a fair bit of time away from my cross-stitching, but it’s all good. Interaction with people is good. 1:00pm rolled around the nurse was in for the afternoon blood pressure and temp check, still all good there. 2:30pm it was time for the stimulation injection and afternoon steroid infusion. My nurse wasted no time, she stabbed me right away and got me hooked up and dripping fairly fast. Downside was when my drip finished I hit my nurse button, nurse came in and shut the button off and said she’d be right back. She never came back. Hit the button again after 10 minutes, same situation, then she never came back. Ended up waiting for about 30 minutes after my drip was finished, when I hit the button again and got a different nurse who quickly unhooked me and took away all the stuff. Luckily for me this time, I did not end up getting blood back into my line, a lot of times after my infusion finishes my line starts filling with blood, this time it didn’t. But she flushed my line all good and doused it with alcohol before sticking the end back on. All was well, just a bit irritating being hooked up for so long for no real reason.
Dr. F actually stopped by early this afternoon for his final checkup, he actually showed up right after I first got hooked up to my drip. Did his normal afternoon chat, make sure everything was good, handshake, goodbyes, and he was on his way.
So now back to the oh so fun topic of food. So I’ve been here long enough I know the weekly menu, it is the same every day of the week, with very few exceptions. At 11:50am lunch showed up, a bit late really considering how it normally comes, especially since I’m first in line for it on my floor. I knew what to expect. It was a liver stew mixture, with a side of buckwheat, spicy veggie soup, and bread. I mixed the liver mixture and buckwheat together, doused it with mustard, mixed it up, and zapped it in the microwave for the required time. Downed it, then ate the soup, saved the bread for dinner. Dinner showed up around 5:45pm and was again what I was expecting. A whitefish fillet covered with a carrot mixture, mashed potatoes, bread, cookies, and tea. I utilized my bread from earlier as well and made 2 pieces of garlic bread to go with dinner. And I ate it all, minus the cookies, just wasn’t in the mood for that tonight.
My night finished up with my blood pressure and temp check around 7:00pm, all good like always. Then a bit later Olga headed back in to empty my trash and to chat a bit more. Good way to end the night, sweet lady.
All in all not a super exciting day. A full week in isolation so far. Numbers doing what they are supposed to. Will see how tomorrow goes. I have hope I’ll be free from Isolation, but it is what it is. Hope the new immune system takes a flying leap tonight. Fingers crossed.