I was so tired yesterday I slept. I slept a lot. Then I couldn’t sleep all night. Stupid me, I should’ve known better. Will endeavor to not sleep as much today so I can sleep tonight. Still recovering from the foley catheter too. TMI ALERT: I pee 10 times a night easily. Plus you can add diarrhea to the mix making for an eventful night. I’m not really tired yet this morning either, which is weird cuz I laid here in bed for 8 hours (minus getting up to pee and such). I should be tired, but instead I am a little wired. Gonna be a long day I am sure though.
Day +2 brought mouth sores to the party. Got several in my mouth and the rinses they have me doing aren’t taking care of them. Hopefully the doc I see today gives me something that can fight them, cuz it hurts to swallow, it hurts to breathe right now.
Alexa got confused this morning and went off at 6:20am. Teresa was not happy. She doesn’t want to be woke until 7:10am, big difference if you ask me. Luckily for her she has the incredible ability to just fall back asleep.
Today promises more chemo. A little 10 minute “Chemo bump” they call it. Supposedly just enough to get the new stem cells fired up and working. This is the chemo which caused the mouth sores.
Hair loss is to begin sometime this week. I probably won’t lose it all like last time, but most of it. I’ll be happy if I don’t lose my eyebrows and eyelashes. Yes, I said happy.
I reserve the right to make a 2nd post today if things significantly change or something comes up that I feel there is a need to share. Otherwise, I just wanted to whine for a few minutes this morning. I feel kinda rotten now.
Yeah, it’s 9:20pm, I have officially been part German for 2 hours and 20 minutes. Or at least that is when the transplant ended. Felt good thru the whole thing. Tired now, waiting for my meds. Then shortly after meds, I will try to get some sleep. I get out of the hospital tomorrow. The real work starts on Saturday.
Today started off with great promise. All the problems of yesterday were taken care of over night and I felt good (relatively). Then about 1 o’clock the nausea hit, asked and got Zofran, which had been helping all along with the nausea. Today it didn’t help. So now I am loaded up with an Ativan too in hopes of taking care of the sick feeling. I have a transplant to attend.
So, people keep wishing me Happy Birthday, cuz this is like a 2nd birthday supposedly. Basically, I am being reborn as a 19 year old german dude gutswise. I wonder if I am going to start craving bratwurst and sauerkraut. My DNA will change as well as my blood type. I still should be the same Jeff Campbell, with possibly a few new quirks.
Stuff starts at 2 (it’s 1:30 now). More water being pumped into me. Yay rah. 4 hours pre-transplant and 4 hours post-transplant are dedicated to flooding my bladder/kidneys. All in the name of protecting these organs, so it’s all good.
My stem cells should be here by now. I won’t get to see any particles floating in the fluid cuz it’s not a bone marrow transplant. So there won’t be any cool pictures. It’ll be me, sitting in bed, getting an IV. Same thing I have been doing since I checked into the hospital 8 days ago.
Since the transplant is going to start so late, we have been informed that I won’t get released from the hospital until tomorrow. Which is fine I guess. One more day isn’t going to be the end of the world.
They still haven’t gotten us “THE LIST” of stuff that Teresa needs to acquire to take care of me. This supplies list was supposed to be given to us 9 days ago, but that was the day of the big computer update and they haven’t been able to find the list since. DOH
I’m tired. Ativan makes me sleepy. I so could take a nap right now, but a 15 minuteish nap just isn’t gonna be enough. But I do think I’m gonna lay down, maybe laying down will help my nausea, don’t think it’ll hurt it any.
Today was/is Day -1. Tomorrow is scheduled to be transplant day and by all the look of it, it’s finally gonna happen. The sick feeling that started yesterday (which I didn’t write about here) has carried on to today. Too many trips to the bathroom for general nastiness have made my hemorrhoid grow to the size of New Jersey. The diarrhea has a neon green glow to it (chemoshit, one nurse called it). We are currently waiting for the C-Diff test to rule out me having that. Please don’t let me have that too.
It hurts to pee right now, they say that will go away in a couple days. It’s from having the foley catheter in for 2 days, stretched everything out. But after hearing the horror stories of people ho refused the catheter, I think I am gonna be glad that I went ahead with the catheter.
Have had real problems with nausea and bile heaves the last few days. It’s totally from the chemo. In case you didn’t know, I can not throw up. Once food or meds get into my system, NOTHING comes up. Haven’t been able to puke since April 2004. So instead I get really nauseous, then start heaving up the bile that resides in my throat. I would say Fun, Fun, but it’s totally not, very painful.
Being in the hospital for 9 days is about 7 days too long, especially when you didn’t feel sick for the first 6 days of it. All the sick feeling has basically came on the last 2 days. Yeah, I had some nausea around day -4 but it was nothing compared to the last 2 days.
But the transplant is tomorrow. YAY. Then baby chemo every other day for 5 days. Daily blood tests, probably every other day some form of infusion (Hemoglobin or Platelets). This routine will go on for quite a while. Not for the whole 100 days I don’t think, but for a good portion of them.
I still have all my hair. Should start falling out next week. Hoping I keep my eyebrows again like last chemo. Pale and completely hairless is creepy, eyebrows give a touch of humanism. That sounds heartless, and right now I don’t have the energy to care how heartless it sounds. I feel sorry for anyone going thru this crap that loses all their hair, the good news is that it grows back fairly quickly.
Teresa is being super-woman for me. Today she worked a full day, helped me immensely with everything, went grocery shopping, and is now going to grab dinner. I would say I love her more and more every day, but in reality I don’t think I could love her anymore than I do. So I will just leave this as I love you Babykins, and appreciate all you are doing for me during this and all the previous trying times.
My back is starting to hurt, I’m gonna lay back down now. Thanks for reading. I should have a post tomorrow or the next day to let you all know about the transplant itself.
Day -4 has arrived. My nurse I started with was changed during the night. But that’s all good, he couldn’t hang my chemo so he was voted off the island. Well, not totally off the island, but rather he got bench duty and running around. It’s a shame though, he is a really nice guy from Africa (cool but hard to understand accent) and just loves it in American.
Day -4 is significant in the fact that today will end the 4 Chemos a day. So, I am getting my 6am one now, will have noon, six pm, and midnight and be done with this first chemo. My blood stats dropped a little. Hemoglobin enough for me to want to ask when they infused Blood. (Reminder to ask when they infuse blood).
With the exception of being really tired after walking, I have not experienced any horrible effects from this first chemo. I am not so sure about the chemo that starts tomorrow. Dr Alkhateeb said it’s worse than any chemo I have been on. I only take it for 2 sets of 2 hours over 2 days, but I have to get a Foley Catheter and have my bladder continuously irrigated. Pretty scary stuff in my opinion. I will post about this more tomorrow as things get started with the new chemo then.
Wednesday I get to go “home” Well, the Gift of Life Transplant House. I get to be out of the hospital so they can do the outpatient transplant on Thursday. Everyone keeps saying that it’s an unsure thing as to when my stem cells will arrive from Germany. I don’t care when, just want them to come. If they don’t arrive by 9pm, the procedure gets put off until Friday.
My mental state has been solid good during this hospital stay. Laughing, joking, having a good time. I think that is part of what makes me such a good patient that nurses like helping out. I don’t ask for much, so I am not a pain to them. And all the nurses are really cool, that helps a lot too.
I experienced the first sign of chemobrain though. I couldn’t read 3 and 4 letter words (AGAIN). Trying to read a post on Facebook it took me about 5 tries. Chemobrain is coming back and I can’t possibly say it’s welcome in any way.
I get a kick out of all these medical people who come in to my room to tell me how great I look. LOL. I still say I am not sick. Or the only sickness I got is from the chemo and it’s not going to keep me down for long. Here’s hoping I don’t get all the neutropenic fevers and infections I got in 2015 and my life can get back to normal sooner.
Pretty soon the new nurse should be coming in to introduce herself (there I am being sexist as there are 5 male nurses who work here). Odds are it’s a female. Anyhow, I like meeting the new nurses, keeps me on my mental toes trying to remember names.
Nothing major happening right now, so I am gonna cut this short. Gift of Music on the way.
It’s Saturday, May 12, 2018, otherwise known as day -5 to me and my readers. It’s 6:36am as I start this blog entry, so bear with my if it seems a little groggy as my sleep at night gets interrupted on a regular basis and mornings have never been my strong suit.
Steroids, anti-nausea, then chemo. That is how this morning has went so far. The Bulsufan hasn’t been too harsh as far as chemo goes. TMI Alert- I think I had my first tinge of diarrhea this morning, don’t know for sure cuz I wasn’t awake for it. Diarrhea is the biggest side effect of both the chemos I will be on.
The good news is that I only have 7 more Bulsufan doses to go. The bad news is then I get a foley catheter and the nasty chemo that I can’t remember the name of right now. They have to catheterize me so they can send fluid into my bladder continually for 2 days. Can you imagine feeling like you have to pee for 2 days. Well, the catheter also sucks out the fluid. I am guessing it’s just gonna be uncomfortable.
I’m drinking water like mad. 7 to 10 bottles a day. Everyone says this is good, so who am I to argue? I am eating 3 meals a day too, from room service, and although the menu looks glum for breakfast, I am sure I will find something to eat this morning. Perhaps I will try their blueberry pancakes.
I have it cold in my room, cold enough for people to comment. Almost everyone who has commented says it feels nice compared to other rooms which are really warm. I think I might be the youngest patient on the floor, which is neither here nor there, just a point of fact.
I still feel really good. My Hemoglobin went up a bit, my platelets dropped a bit and I am unsure if they are tracking my white blood cells. But they have me on anti-fungal, anti-bacterial, and antibiotics. I feel like I am in good hands. The nurses here are all top notch, great people, I am happy to have chosen Mayo Clinic over the other alternatives.
Teresa decided to sleep in today, which I think is a good thing for her. So, I don’t expect to see her til noon or so. I told her she needs to take care of herself more especially while I am not really sick yet. I love her and I don’t want her to make herself sick trying to take care of me.
Dogs are getting along decently at my mom and brother’s house. Mojo has taken to pooping in the kitchen and Pucky will only poop on the pads. But beyond that, all the animals seem to be working out a pecking order. So it’s all good there I think.
55 minutes until the chemo is done. I should grab the phone and call room service in 2 minutes. Gonna try their blueberry pancakes. Hit with a wave of tiredness though. UGH. All is well here in Mayoland. Just wish that I could warp forward a few days and get this over with.
Firstly, it’s good to be alive. Teresa is here with me, while I am getting chemo every 6 hours here at Mayo on Officially Day -7. Teresa says I won’t lose my hair until after I get out of the hospital. I kinda hope it happens sooner, but it’s all good either way. Day (negative) -7 is one week from Transplant day. It’s hard to believe it’s only 7 days until THE DAY.
Chemo started at 6am this morning and will happen every 6 hours for the next 5 days. So I am do for my next round in about 4 minutes. This first chemo isn’t very harsh. It’s supposed to make me nauseous, but it seems the Zofran they gave me is keeping that from happening. I’m hungry for lunch, so, so far so good.
The big bad chemo started on day -3. It’s a much more brutal chemo, and will most definitely do things to my nausea level, even with the Zofran. Plus, tmi incoming, it’ll probably give me diarrhea as everything seems to do that and its a know possible side effect of that chemo. So, something to look forward to in the days ahead.
For some reason, every time they check my O2 level, the number initially responds low… I am not out of breath, I do not have any oxygen issues, it just starts low and then works its way up as we talk about it…. weird.
We bought the Large Vogmask, which is the N95 respirator that I need to survive this… It’s too small. I can’t open my mouth without it coming off over my nose. Very frustrating, more frustrating is that Large is the largest that Vogmask makes, and quite possibly the only one that comes close. We have searched the net and haven’t found a viable solution to this problem.
OK, I drink water during the day, quite a bit of water actually. The nurses are trying to keep track of my intake and output. It’s a fun game. TMI again, I drink a lot, I pee a lot. So the numbers are bigger then normal, so what, it’s all good.
Teresa is off to go get me a chicken in Pokemon Go. I can’t go to the different raid spots cuz well, I am in the hospital. So, Teresa is taking my phone along. It is really nice of her to do such, in my opinion.
Every nurse I have dealt with here has been super. So far I am enjoying my little visit to the hospital because the people are so cool.
The doctors are trying to get me to get up and walk. I have no problem with that. I will walk several times a day. Just when I am not walking, I prefer to be in bed. It’s my jam. It’s what I do. The doctors can’t seem to get this concept around their heads. Oh well, they can lecture about getting up all they want, I will still do what I do. Which includes not a lot of sitting.
Well, the pharmacy fumbled the ball, it’s almost 1pm and my noon chemo hasn’t arrived. This chemo running late is going to cause my 6pm chemo to be late, which is going to cause my middle of the night chemo to be late. Grrr The pharmacy isn’t impressing me much.
Last night I got my last med after 1am cuz the pharmacy couldn’t get their act together.
I only slept about 3 hours last night cuz of the pharmacy and cuz of the pain involved with the hickman port. DAMN that hurt. It’s feel better now as long as I don’t turn my head. I did however, get a few naps in during the day today when I was feeling a bit better.
Overall, I am feeling a lot less anxiety as this moves on. I feel that these nurses know their stuff so good that it’s senseless to freak out about it. So, I am not going to freak out about it anymore. And I will feel better for it all along.
Peace to you my faithful readers, hopefully I will be getting chemo soon.
