So today was the day that my beloved alien friend who has been attached to me for around 3 weeks was removed at 10:50am to be exact. They kept it in through today to do the final major blood draw this morning. I have to say the removal of the neck line was far more pleasant that I thought it would be. A few recent patients talked about how horrible it was, how bloody it was, and how long you had to lay there holding pressure on it, not the case for me or anyone else who had theirs pulled today, I think those former patients were full of crap honestly. The nurse came in, had me lay on my side, started taking the tape off, clipped something, and then I felt her quickly press on my neck and there it was just dangling there in her hand. Felt absolutely nothing at all, it was crazy fast. She held the gauze hard on the area for about 5 min, checked it, some blood oozed down my neck, she slapped it back on again, checked about 5 min later, bleeding had stopped, taped me up, and I was good to do. Then still laying there she had me pull down one side of my pants, jabbed my butt with the shot and she was on her way. I will say though after my neck line was removed I was light-headed for about 30 minutes and had a dizzy spell in that time frame, all completely normal to happen with your body getting all the blood sorted back into place. After that I was good to go for the day. And yes you can take the neck line home with you if you want, you just have to ask, and I’m taking mine home. Cleaned it up all nice in the sink and have it ready to go. 3 out of my group of 5 are willingly taking theirs home, 1 is taking it home because her hubby insists, and the other gal tossed hers and had no interest in taking it home. So personal preference, but really it is kinda cool to take home as a reminder of the whole experience, I will hang mine on the wall, just cause I’m weird like that. Some pics….
Really that was the major excitement for the day. My neck feels so naked now. In all honesty it took about 6 hours until my neck actually felt normal, I still had the feeling that something was there for that long. Even now at like 11:30pm at night you can still feel where it was and I’m sure it will take until the wound actually heals until that feeling goes away. But the line is out and I’m sure if I could actually manage to fall asleep it would be amazing to sleep without the damn line being there. So here is hoping to get some sleep at some point in time tonight, but as of now, still no sign of that happening.
So back to the start of my day. I woke up at 3:30am. Once I fell asleep last night, I was totally hyped up on coffee to ease my steroid indused eating insanity so that didn’t happen until midnight, I slept like a rock for like 3 1/2 hours, but then I was awake and wide awake at 3:30am…..and now it is 11:30pm and I’m still wide awake and energized, and I haven’t had any coffee….. So what does one do at 3:30am, well ponder how to hold all that pee in till closer to 6:00am for the urine test, because the urine has to be from the overnight relieving, can’t be from impulse water drinking in the morning. I managed to avoid eating food until 4:00am, then devoured what is in the below picture. And yes that is natural lighting from the window, it really is that light out here now at 4:00am.
So then I started coloring to take my mind of the intense need to pee. Okay the protein drink really didn’t help with that, but I needed calories to get me to actual breakfast. So I managed to hold off on the peeing till 5:00am, then did my urine test and set it next to my door in the hallway like requested. I like to be prompt and the nurse came right over and grabbed it and said you are the first one today and patted me on the back and took it off to wherever it needed to go. Getting praised for filling my cup first, victory for me!!! Had I known this was an achievement I would have gone for the gold and peed at 3:30am when first waking up, such is life…. No need for any pictures of said urine sample, I think everyone has done a piss test before in life at least for drug testing for employment, so nothing super exciting.
6:25am the nurse came in and drew up several syringes full of blood and filled up several tubes. Today they were running a full blood panel so lots of blood. Sadly I never got to say good bye to my favorite nurse, never seen her once today, so depressing. We had such a good bond too, now she is on her weekend and I’ll never see her again, but at least we had fun in the past week with all our discussions on politics and on every other topic imaginable.
8:45am Breakfast #1 rolled around. I still think they need to go back to their old food schedule from past years to the 6:00am-7:00am breakfast time, would be much better for steroid indused eating crazed maniac patients who want to eat earlier. And it’s not just me saying this, most in my group feel that an earlier Breakfast #1 would be a good thing. There is no such thing as sleeping in when you have to be up before 7:00am every day anyways, so hell you might as well have food!!!! But breakfast today was the cream of wheat type slurry mixture, and egg white square, bread, tea, and more freaking sugar packets. There will be quite the pile when I leave.
10:45am Dr. Fedorenko came in for his daily visit. My blood pressure and heart/lungs were all normal like always. Then we got down to the numbers for the day. My Leukocyte counts aren’t super amazing still at 5.78, but he believes that is solely because my platelets decided to just go crazy yesterday and jump by 70, I’m up 253 on those and well in the normal range. Hemoglobin levels hanging constant at the moment. So since my platelet counts are now considered average for a female of my age, he feels the Leukocyte count will go crazy overnight. We will see. Everyone is different at this stage of the game, so some people slowly rise, others jump quickly and then level off, but we’re all in the “safe zone” to be in public in a mask, so there’s that. In my group, people’s numbers are just all over the board, so there is no real normal for that. Much like how isolation was, never know how long you’ll be in. He then informed me the nurse would be in my room in 30 minutes to remove my neck line and do my butt jab injection. The usual question and answer session was done, our goodbyes were said, handshake, and away he went. The full blood panel and urine panel results we get in our final meeting with the great Dr. F before we head home. But in looking at the time frame of his visit 10:45am, it was about a 5 min visit today, nothing super exciting, you will notice that the times always speed up here. He said in 30 minutes my neck line would be removed. Literally like a minute after he left the room the nurse was in at 10:50am and pulled the line. They waste no time here, and when it comes to neck line removal, I’m cool with the prompt service. But the neck line removal was discussed earlier, so no need to cover that again, other than the fact it is amazing that my alien has been removed and is now in my suitcase.
11:30am Breakfast #2 showed up. Monday is always a good day, it’s chicken day…. And I mean real chicken, like actual pieces of chicken. Today I got a wing, was really disappointed, I mean really a wing, there is like no meat on a wing at all. Luckily my steroid induced eating has curbed a bit today, so I could handle that. But along with my chicken wing, there was a container of baby yogurt, 2 gigantic cooked apples and I mean they were freaking huge today compared to normal, and then the standard cup of plum tea/broth/whatever.
So to add to my excitement for the day, just for added fun and to keep it real, since I’ve been very honest and upfront on this whole journey, exactly 28 days from the last one, my period decided to come back to visit me….. Yeah I get to be one of the lucky ones to have that happen. It’s really hit or miss if you’ll get one after the treatment I think it’s cause I most likely had already ovulated before the chemo took affect so now I get to deal with it, here’s hoping it’s a short one. But I do know that the chemo can throw you into menopause or pseudo-menopause and periods can either disappear completely, be completely random, or occur on a regular schedule. So who knows that the future holds there, but lucky me, dealing with it again. Makes life exciting and keeps it real, wouldn’t want to mess with my normal monthly schedule.
So I’ll just cover lunch and dinner in this next section because I wasn’t in my room when lunch was served and amazingly I wasn’t hungry, I know shocking given recent blog posts. So I actually put it away in the fridge to save for later and I ended up eating it along with dinner when dinner came, because at that time I was actually really hungry. It’s a chicken day, so lunch as well contained a piece of real chicken, this time I got a leg, much better than a wing. Chicken came with a side of boiled cauliflower, pureed veggie soup, and bread. I typically hack up the cauliflower into small chunks and dump it in the soup and eat it that way because boiled cauliflower just isn’t super appealing to me on its own. then dinner was a beef stew mixture with chunks of beef heart, bread, tin of beef baby food, cookies, and tea. All in all, not a bad food day really, probably one of the best of the week. I did spread peanut butter on the cookies to make them more appealing. But my steroid induced food rage has subsided a bit tonight, so that was all I’ve eaten since, nothing else. Hope that sticks around, I’m really running out of food options here.
So today I had a lot of time to kill, since after Dr. F’s visit there is really nothing else on the schedule. I spent part of the day coloring and then the rest of it I was rarely in my room. I spent a lot of time in the lounge today chatting with various groups of people, always a good time. Then went outside to walk around the grounds for quite a while. The sun was actually out today and it was beautiful outside and it’s spring, can’t complain. I did even venture over to the grocery store to stock up on some goodies to take home for my family and a bit more food for myself for my plane rides home. Ironically I did not get very many odd stares even though I was wearing a hat and a mask with a giant bandage on my neck, obviously people in this area are used to random hospital patients roaming the area and think nothing of it. But here are a few pics from the hospital grounds on this beautiful sunny spring day.
So all in all my day wasn’t super exciting, but I did get a lot of good conversation in with new and old friends today. Met one of the new Aussie patients that starts this week, always nice to see the new patients at the start of their journeys. Good times.
So I’ll finish up this post like I have been ending them recently, improvements and side-effects. I’m an honest person here, today was not a great day for me. I haven’t had any crazy side-effects like bone pain, hot flashes, night sweats, etc. But in general just didn’t have a lot of energy today, being more active did help me feel better, but all in all just a more down day, it happens. It’s a rollercoaster ride for the next year or two, ups and downs, take it how it goes. Plus we’re completely weaned off steroids now, so not getting them will cause some issues over the next few days as well just because the body is used to them and now can’t have them anymore. As for improvements, still the same. Nothing new to report there, I do still have a bit of sensation in my feet and I’m trying to come to terms with it, walking is awkward for me because I’m trying to figure out how to handle all the sensations of being able to feel my socks and shoes. It sounds completely ridiculous for a normal person, but trying to adjust to something you haven’t had in so long is not the easiest thing, especially when it just feels so weird all the time.
So that’s my day, it’s now 12:30am and I am still not tired and I am not going to take a sleeping pill, so hopefully I will be able to fall asleep soon and sleep straight through till morning. I really think it is the lack of steroids causing this now, my body is figuring out how to adjust. So to end this post, me acting weird outside in the sun earlier today.