Good early morning!
I've been up since 4:30am. Not feeling great, shall we say. Thought I should start the blog since I have no idea how long it will take me with breaks and possible dozing sessions--LOL! But you can bet this will be the shortened version...and yet it will be quite long to cover everything! ROFL!
Warning--you know I will honestly tell you what has been going on and it certainly ain't pretty this week. (Don't worry--no pictures of the gross stuff.)
I wish I could get the picture out of my mind, to be honest.
Well, the week started out okay.
Monday
Katie came to clean. We had a nice visit, too. Puttery R&R rest of the day.
Tuesday
Had a quiet day. Dead-headed the planters and watered them. In pajamas by early afternoon--LOL! Watching Goliath on Prime with Billy Bob Thorton.
Wednesday
Got the trash to the dunpster, checked the mail, and back in pajamas. Eye bothering me again! By evening it was just as bad as the first time. Obviously not just pinkeye. Never was totally better. Getting streaks of light off the side of that eye once in a while.
Thursday
When I had been in for pinkeye that doctor had told me if it got worse I should see an eyedoctor because it could be something else. So I called my eyedoctor's office first thing in the morning...waited for him to call me back because he was booked up.
He told me to go to the Walk-In Clinic again because it sounded like I might need to see a specialist and they could refer me...and he would refer me if they called him, if needed, but I should be seen right away.
So Leah and the boys dropped me off at the Walk-In Clinic in the morning. This younger doctor said he could see a blood vessel in my iris--which he'd never seen before. They set me up with an appointment with an eye specialist for 2pm.
We went back to my place because the controller for my chair had arrived and Leah was going to see if that would fix the chair. She needed to run home for her socket wrench set. The boys were playing and fine with me. It is so nice that they are of an age now that they can play well together.
Nope--didn't fix the chair. Had to call them back and order a new "tranformer", too. (Which confused the boys--LOL!) Hasn't come yet. Fingers crossed. I would hate to need a new chair--awk!
Anyways, they dropped me off at the eyedoctor specialist and I have eye ulcers! I have never even heard of them. Apparently common, but can do a lot of damage (I googled them). He gave me a prescription for special eye drops 4X a day and said I had to come back the next day. I said I was starting chemo--but he said he did not want it to wait until Monday. So we made his latest appointment he had open for 3pm--after chemo.
They dropped me off at home. Was actually raining.
I was so exhausted I slept for a while before Leah came back that night (our used-to-be normal craft night). I wanted her to cut my hair before I started this weekly chemo thing. She helped me pack my chemo bag. We made a list of everything for me to remember in the morning, too, since I am really spacy.
Friday
We were there from 7:45am till about 2:15 pm.
First waiting room.
This is where we waited before the port flush, blood draw, and set up for chemo...and then later for the appointment with Dr. Kobrossy.
Had way too much in my chemo bag and poor Leah hauled it around for me all day..plus her own smaller bag with water bottles.
We had a brief appointment with Dr. Kobrossy in his office after the blood results came back. He wanted me to have the flu shot and I asked about the shingles shot because I had chicken pox and my mom and others I have known have gotten shingles and it sounds horrible...as long as I was getting a shot, right? Yes, they could do that. He sounded like I would sail through the day, really. Then we were sent to the infusion area.
This was my cubicle for the day.
As you can see there are two small tables on either side of the chair and they are attached. The chair was more comfortable than I first thought it was going to be...but any plans I had to do card front coloring were out the window. I did ask for a pillow so I could use my laptop, though, and that worked fairly well.
Leah took pics of the hallways outside our cubicle.
There was a bathroom at the end of each hallway. This one down on this side (right door) was the closest one--I used frequently, I might add.
I had to be right in front of the nurse's station where they could keep an eye on me (new)...and there are never any curtains you can draw on any of them, I don't think. There seemed to be a couple of rooms with doors like the one next to the bathroom I used--but they were always open, too. So not much privacy, I guess.
Leah set up my phone, tablet, and laptop with the hospital wifi. I have to sign in again every time I return, but I will hopefully be able to figure it out. I used my ear buds and caught up on youtube videos...and with all the interruptions, trips to the bathroom, and conversation that took me the whole time we were there...so we figured I probably wouldn't need my tablet for reading at all because I can listen to audio books on my phone. (My eyes are pretty shot anyways, really.) And let's hope I can figure out my earbuds--LOL! If I have technical issues I think a nurse would help me. They seem really nice.
I had several bags of fluids drained into me. Stuff for nausea, fluids to protect my kidneys, steroids. I had the mild chemo first and then had the stronger chemo after a huge bag of saline...which started me peeing a lot (steriods make me thirsty and pee constantly we remembered from when my leg swelled up). Every time you have to push the nurse button, wait for them to unplug you, and wheel the IV stand down the hallway to the bathroom. Let's just say with the bladder surgery I am not up to capacity yet in the first place and didn't make it sometimes. Luckily I planned ahead with extra Poise pads in my pockets--so disasters averted--LOL! But I was full-on peeing like every 20 minutes!
A nurse gave me the flu shot right in my cubicle but they said I had to go down to the pharmacy to get the shingles shot and they had it all ready to go. The stronger chemo solution was starting to effect me by the last half an hour (2 hours of that one). I was feeling a bit dizzy--lightheaded--when I got up to walk my IV stand around.
Around 2ish they released me and we went to the pharmacy in the building so I could get my shingles shot. (Need another one in December, I guess--didn't realize you needed two of those, too.) We headed over to the eyedoctor's for the 3pm appontment and had about ten minutes to spare.
I had some noticeable improvement so he said he'd see me again on Tuesday. While I was in his office my ankles felt really strange--like there was this band of buzzy pressure around them a good 3 inches wide. Really odd, I thought. I had this queasiness in the center of my being for the last hour or so. Felt like I could throw up or have acid refux.
Was I ever wrong.
As we ended the appointment and I was walking out to make the Tuesday appointment--I literally--no warning--could feel myself losing my bowels! I asked where the bathroom was--luckily it was close and one of the single ones with a door you could lock--because OMG! Having IBS for 20 years this was my nightmare come true!! Pooping your pants in a public place (luckily I whipped them down so fast it was not as bad as it could have been on my clothing--but I hit the toilet seat and down the side onto the floor and even somehow my one (white) shoe (which I didn't notice till I got home).
I don't know how long I was in there cleaning up the mess-of-a-toilet with that one-ply toilet paper. Had to flush three times! Then poop again and flush again. When I thought I could last long enough to go to the desk to make the appointment I managed to get out and weave my dizzy way over there. They knew I had just come from my first chemo appointment from the day before so it didn't surprise them I looked like death warmed over, I guess--LOL! Since the office is divided into two sides, really--desk and glasses sales--and the bathroom is kind of by itself in the middle--no one seemed to have noticed at all how long I was in there. Oblivious-chatting away. That was a plus.
I was mighty miserable by this time. Felt like I was running a temp, hot, sweating...my hand left a moist print on the glass countertop anywhere I touched it. Got my 2pm appointment and went out to the car--glad I had brought my sweater to chemo so I could wrap it around my waist.
Still needed to pick up chemo medications from the pharmacy--so Leah dropped me off at home and headed to pick those up. I rushed in the building, made it down to my door, barely get into the apartment and step in Annie poop! Leave my shoes to mark and warn Leah...am stripping down the hallway to get to the toilet again...and then jump in the shower.
Since I had been fasting since Tuesday night that pretty much emptied me out so I could have had a colonoscopy--LOL!
After I showered and got into a nice clean lounger/pjs I collapsed into my broken chair and took my temperature--no fever. And yet I was sweaty and felt terrible. That weird, buzzy, pressure band feeling was around my ankles and wrists--so very icky feeling. And my nose was doing it--and my whole face and head felt all funny and dizzy. (Still do.)
By that time Leah arrived and I warned her about the Annie poop (guess who else had diarrhea!). AND that I found Annie barf in a couple places on the livingroom rug, too. But I could hardly move. Told Leah to leave my shoe with the Annie poop and I would scrub it later on. That way she could just use that spot cleaner machine and not have to touch anything. Poor Leah! Talk about seeing a person at their worst and most vulnerable and then also dealing with cat poop and barf, to boot.
Leah hung around to make sure I was okay, made ice cubes for me, and emptied out all the things we figured I didn't need in the chemo bag. Had to lighten that bag up. She was hurting from carrying it around and I never would have managed, she said. She set up alarms on my phone and labeled them for me. Between 4X a day for eye drops, 3X a day for nausea pills, 1X a day for two other pills...I have alarms going all day.
[Turns out everything tastes really off and I am always queasy so I don't need to bring my own coffee or a full water bottle. I can hardly drink my favorite Sumatra coffee anymore!! In fact, I am down to plain water and Leah's homemade chicken broth.]
Spent a miserable evening and trouble sleeping at night...but will doze off at any time during the day for a short time. I know the next alarm will wake me up if nothing else--LOL!
Saturday
Having that little push from the steroids--I figured I had best take advantage of it since I was behind on everything. I did a couple loads of laundry. But of course, forgot I had a wad of kleenex in my sweater pocket and had to spend a lot of time leaning into the washer to clean out the litte pieces. (Thought that was going to make me barf for sure, but I didn't--feel like that all the time, really. How would I be without the anti-nausea pills?)
I kept going for half the day--push and rest--push and rest...but then it became rest and sleep--LOL!
I hadn't set up my bullet journal for October yet, even. I had to do my banking and walk my check down to the rent box by the office. Well, I discovered how terrible my brain fog really is when I balanced the checkbook statement! I just have my SS check once a month on the 3rd so I deduct all my automatic payments and rent for the whole month at that time so I know what I have left, right? I totally forgot to deduct Netflix!! I have a list written out! I have never ever done that before. I live close to zero every month so I have to keep track carefully. It cost me $96 in overdrafts...so I started out really backwards this month. I'm okay. All my bills will be paid..but really proof again of how brain fog has overtaken me as badly as it did when I was trying to finish college back in 2004. Hopefully I will not do that again. But I will make sure I leave money in there every month just in case. Can't be down to $2.00 in the future. ;)
Sunday
Leah came over to drop off some ice cubes, cheese, and some of her homemade chicken broth for me. They have an automatic icemaker! Nice. We both kept our masks on the whole time. They have sore throats and colds going around recently. First Ian, then Dagan, and now Leah was just starting to wonder about her throat. We made a trip to the dumpster and we hauled the bins of winter clothes in from the garage.
Leah went home and I have been just enduring ever since. I'm not fasting since last night but nothing tastes good so I am barely eating, but that won't hurt me. I'll try to eat something from Sunday nights till Tuesday nights--but I plan to fast two days before, during, and two days after. And after the horrible bathroom incident--sure doesn't bother me that I am not hungry--LOL!
Hopefully things should go easier now for the rest of the month, anyways. I didn't realize I have the double whammy one week and then the milder one by itself for the next two weeks and then one week off. Could have been the combination of getting chemos and shots, too. I've not have a bad reaction to flu shots, but I have never had a shingles shot. I don't even have a sore arm. ?? Anyways, that was a nightmare for me at the eye doctor's Friday, I can assure you.
So, the next two weeks I can go in later in the morning for chemo and not be there for 6 1/2 hours. More like 4 maybe. And then a precious week off!!!
I just want to curl up with Annie and rest all week and get through the ickiness, discomfort, and nausea--but I have to go back to the eyedoctor tomorrow. Can't remember this new guy's name--something with an "L".
Thank goodness for Leah's homemade chicken broth! That's been the only thing that tastes okay to me--actually good sometimes. Might end up being my staple food at this rate.
Most disappointing that I am so lightheaded and on the dizzy side because I don't dare use the sauna. Even my face, mouth, and teeth feel weird still. That's the last thing I need is to fall or pass out--no can do. So I have to wait until my head feels right again...and who knows when that will be--LOL!
I picked out a pretty journal to keep my Chemo Diary for Dr. Kobrossy.
No, he didn't ask me to but he said he wanted to know about my symptoms. Well, if I don't write them down I won't remember with the brain fog. So even if they don't make sense or I repeat myself--I will jot down notes for when he asks end of the month.
I could have scrawled across the page with a big red marker--"One of the worst, most embarrasing, and physically miserable afternoons of my life".
Well, I still have space at the bottom. ;)
Who knew I'd be bringing you on this particular adventure with me?! You never know what life will hand you, that's for sure. We truly don't. I'm so lucky I am not having to take care of kids or try to go to a job...no responsibility but Annie. And, sadly, been sharing some of her delightful issues with Leah lately. Oh, and Leah's had the occasional plant and bird duties, can't forget. Plus she cooks things to bring over--like her precious broth! Goodness!
I guess if I had to have my very worst nightmare happen at least I made it INTO a locked bathroom and maybe even out before anyone knew what happened. That was a blessing. And I made it into my apartment and bathroom okay, too. Thank goodness I was fasting--LOL!
I think the eye ulcers are better. Will know for sure tomorrow, but my eye feels a whole lot better. That's a plus.
Milder and shorter day of chemo on Friday...a much lighter chemo bag...and I pretty much know the routine now.
And I think Leah and I are better than ever!!
Oh, and I had deliveries from Amazon yesterday they told me something was delivered that wasn't...but it came today. The guy across the hall brought it to my door for me because he saw it in the entryway.
There are always bright spots in any day. Something to be grateful for. I'm feeling beaten down, but don't ever count me out. ;)
Have a really nice week.
I truly welcome your comments, emails. and letters. Especially now, my friends. You are my treasures. :)
****
"Make the most of the best and the least of the worst."
Robert Louis Stevenson
20 comments:
It looks like Blogger was even kinder to me today--LOL! Still no spell check, though.
Oh, Rita, it sounds simply awful. I do hope you don't have another one of those bathroom traumas any time soon. Annie must be karmically connected to you. :-)
Oh Rita, I'm so sorry. That was a miserable start to your chemo. Since you've never had it before, plus this was the stronger one we can hope the other sessions will not be this bad. Chemo is not easy so rest as much as you can and try different things to eat that won't bother your stomach too much. Maybe even try something like Gatorade or Pedialyte so you don't get dehydrated. It is important you do what you can to keep up your strength during this time. I'm grateful for you that you have family there to help you out.
Maybe you could start a countdown to the end of chemo to give you something to look forward to. Even something simple like clothespins on a cord and you remove one clothespin for each session done. You could even decorate the clothespins if you felt like it. If you don't know for sure how many chemo sessions you will have then maybe the doctor can give you an estimate to go on. I know this may sound silly but I think it helps to be able to physically see something you look forward to getting closer. Kind of like when you are a kid doing a countdown to Christmas!
Please rest and know that you have many friends that care about you! You are in my prayers and positive thoughts.
Bonnie
Well, that was quite a week, and most of it not in a good way, Rita. I also was unfamiliar with eye ulcers and after looking online and now know more than before am glad to read that your eyes were feeling better. You certainly are getting inundated with new medical issues and your ability to keep us all updated (yes, in every little detail) truly amazes me weekly. I am sure there are some that can relate to one or two things in your posts, like that bathroom emergency. Hopefully, the chemo sessions will go easier in the future, my friend. And I hope you get in more of those R&R days that will be more restful.
Oh my goodness, what an experience. More later
I hope things improve for you and as I have said before Leah is a godsend
I am back! I am not so sure that fasting is the way to get through Chemo...you may need that energy to feel half decent. I would venture to guess that you had the diarrhea because of the stress of the chemo. It will probably never happen again...I hope! Just in case put some paper towels in your bag to help with clean up. It is good that you got your eye checked! I hope you are getting the rest you need. Poor Annie sounds like she was sick for you! :(
My God, you have been through absolute hell - I got very upset just reading about it. Despite your misery, I think it's good to document all that you're going through. I admire your courage.
I've never heard of eye ulcers and am surprised that so many people have them.
Several years ago I had surgery on both my eyes for severely torn retinas and almost went blind. My eyes have never been quite the same.
Anyway, take care and keep us updated.
Wow, Rita. That's a week, to be sure -- for you, Leah AND Annie. All I can say is just hang in there. After your awful experience today, it's difficult to imagine anything more embarrassing, at least! You can do this. You WILL do this.
Wow, Rita. You have had quite the week, and still you are talking about the good things that happened. You are my hero for your positive attitude. I hope that your eyes recover. I have ulcers in my bladder for years. Before that I had no idea you could get ulcers anywhere but the stomach. Crazy. Leah is such a blessing to you. Prayers for you and your family. I will write or email this week. :-)
Not a week anyone would ever want to have. Stay strong if you can. It must be difficult.
Rita... what can i say... OMG! I literally pooped my pants in public one time... Mortifying let me tell you... I was at the movie theater and had one of those huge pickles... Well apparently it didn't sit with me well and not 10 minutes later i was running for the bathroom... didn't quite make it and had to discreetly walk out of the theater , sit in my car and drive the 10 miles home while sitting in it... uuuuughhh.... what a mess... So glad Leah is there for you.. Thinking of you every single day my friend. Hugs! deb
What a rough time of it you have had. Really sorry to hear how difficult the first round of chemo has been...and then to have a couple of vaccinations and another eye appointment on the same day was probably more than your body was able to handle--as it unkindly let you know. Well, you made it through--Annie showing all signs of sympathy/empathy--unfortunately, a little too sympathetic, yes? Surely hope you are able to regain a bit more strength this week. Do stay hydrated as best you can. Thank goodness for Leah. She really is your guardian angel. Hope that this week's treatment has many fewer side effects. Perhaps you could ask the nurse/doctor about taking an Imodium prophylactic if diarrhea is going to be a side effect of the chemo. At any rate, do rest up (between alarms) and know that others are thinking of you and sending healing thoughts your way.
What a day! What a week! I should feel badly at overreacting over some hearing aid problems yesterday. I got quite petulant and grumpy. Ah well. Maybe it will go better this week for you.
What a rough start to your chemo journey. For nausea remember that ginger helps. I don't like ginger ale so don't know if that does but ginger tea and even ginger snaps and candied ginger to nibble on etc. The bathroom problem hit faster than I would have expected and must have been embarrassing. At least yu know how everything works now and what you can expect though it might be different every time. Does food have a metallic taste to it? That might have just been from the Type I took. Glad Leah's chicken broth tasted good - healthy for you too. Hang in there, gal. We are all pulling for you.
You have been through the wars this week :( I can't tell you how sorry I am there've been so many complications to it all. That you can still notice the little blessings is a joy to hear. I trust this is the worst of it and that it'll be not so difficult going forward {{{hugs}}}
This may have been one of your worst weeks ever, but at least you are writing it all down so we can share it with you. I truly hope things get better soon, because the brain fog seems to consume you. Here's to a much better week ahead, dear friend.
Oh, Rita. These sounds like one of the worst and challenging weeks of your life. Between the eye ulcers (which sound painful) and the effects from chemo, it was certainly unpleasant...to say the least...for you. I'm so sorry to hear that you are experiencing the dizziness, loss of appetite, and digestive challenges. Hang in there! I hope each day you feel less sick to your stomach and your strength and more stamina returns.
Do you have wet wipes in your chemo bag? They may come in handy if you need to do any clean up in the future. I always carry a spare set of clothes with me too. You never know what can happen when you're away from home. I learned to do that after an unfortunate experience decades ago. It was pretty embarrassing and I wish I would have had spare clothes with me.
I hope this upcoming week goes better for you, Rita. I'll be thinking about you this week and will be hoping for the best!
Oh no, my Rita Pita Pan. You know I empathize. I appreciate all the information about the chemo. People talk about it sometimes but you're the first person I know who's described the process in detail. The shingles vaccine used to be one shot. Then Shingrix was developed with its two shots and it's much more effective. When I had the first shingles dose, I got kind of sick, but I realized later that I much have been coming down with something when I got it, because when I got the second dose, I didn't have any side effects. I didn't have side effects from the flu shot either, other than my arm being a tiny bit sore later that day. I know, though, that you have stronger reactions sometimes, so I hope nothing develops from Shingrix or the flu shot.
Love,
Janie
God Bless you Rita. And thank you for your honest sharing. I have family and friends who have had chemo but I never knew what they were really going through. Even my little dog had chemo. Bless her, she never showed me a sad face. I do hope that you are feeling much better now. God be with you my friend, hugs, Edna B.
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