I'm not only concerned about Fairylights, but Kayla.
Kayla, if you're out there---please post a quickie.
I know you had chemo on Wed. and I know it's been hard on you.
You're in my thoughts and prayers.
I miss both of your posts.
We'll all be waiting.
Thanks Singer for thinking of me. I'm not doing well right now.
I didn't get all of the Ritauxin again because I couldn't breathe so they only gave me 1/2 a bag again. I was there almost 10 hours again. This is so frustrating and I saw your post about survivors and I don't think that will ever be me. I don't think I'm going to beat this.
Thursday I slept most of the day and Friday I had the horrible WBC shot. My doc didn't want to wait till Monday like last time. I couldn't even get there and had to ask someone again. I'm such a burden on people and I'm not used to asking for help.
So now I have the pain from the shot which I know I'm going to get. But this AM I woke with a new pain in my lower back and my temp is up to 101. I'm so weak and tired.
Singer I'm so glad you have #6 under your belt. You've been such an inspiration to me you have no idea.
Linda I'm glad your brother is doing somewhat better. I hope and pray that he continues to improve.
Susie we don't know each other but I'm worried too.
It's such a gorgeous day outside and I can't even get off the sofa.
Kayla, I am sorry you are feeling so bad but please do not think you are not going to beat this. There are quite a lot of people who cannot tolerate the Rituxan....it is a powerful med and at least you got half! I know things seem overwhelming at this point but you will be surprised how quickly the time will pass. Don't feel a burden on other people....I am sure they are glad to help and wouldn't you do the same for them? Just take this one day at a time. Monitor your temp. Of course you feel tired and weak....just rest. There will be plenty of wonderful days outside ready for you when you feel better.
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
There you are, Kayla (hi, Alison).
Alison's right. These drugs are mega hard on us.
From my last post, where I was "boasting" that I was feeling great---well, forget that. You know that feeling....it's like "here it comes again."
So, it's couch-time for me, probably for the next 3 or 4 days. If I can just avoid the headaches that seem to come with it...
I'm so sorry, Kayla, the difficult time you're having. I hope you're taking your med's in a timely manner. Most times, I do better if I take 'before' it hits--of course, there's a lot of guessing involved with stomach upset, bowel problems, neuropathy & those awful, awful headaches.
Hang tight. You can and WILL beat this! Remember that mind/body connection? It's very powerful. Do everything you can do, to remain positive.
I just got a script for Ativan (calming/anti-nausea drug) because it worked so good in my drip yesterday. I think it's helping some, otherwise I wouldn't even be posting.
As bad as I feel right now, I'm thinking to myself, "Can I do this 2 MORE times????" Yes...to live....I can. So can you, Kayla. No one said this is going to be a 'walk in the park'....and just think how far you've already come.
I just so badly want you to realize you'll be fine & you need to nurture every little thing about yourself right now.
I think we're all in this together---how nice we have one another.
About your fever, though....shouldn't you alert someone that it's pretty high?
I think I'm supposed to call, if it's over 101. Like Alison said, they're there to help.
God bless. One step closer....
I'm so sorry Singer that you've bottomed out, for lack of a better word. That's the one I use or crash. I hope it doesn't last long but it's like you said you never know what's going to hit you next, nausea, bowels or headaches. One minute "okay", next what happened.
I still have a temp of 102 and my back is hurting really bad. I've taken all my meds and before this time but this is different.
I just called the office and I'm waiting for a call back. I'll let you know.
Trying so hard to stay positive Singer. I'm glad we're here for each other and I'm so glad for everyone here helping us through this.
Kayla, is your back hurting from the WBC shot?
I know those are nasty ole' shots. Maybe they can lessen the amount the next time around? They did with me. I went from a "6" to a "4," and kept up my count. I hate them like mad, too, but without them, we'd be open to infection, and look out!!! We don't want that.
Everyone's making me a little scared, because they keep saying, "Near the end of treatment, you don't want 'this' and you don't want 'that'. I don't know if it's the accumulative effect of chemo they're talking about, or what....So, I just guess through it all, we've just got to be careful. I bought a hepa filter ionizer for my bedroom, since I can't seem to keep my cats out. I hope it helps. They have all their shots and don't mingle with other cats....so, I'm hoping I'm o.k. I use Purell (hand-cleaner) like it's going out of style!
I can tell I'm already getting symptoms of neuropathy. My nurse has me taking 100 mg. of B6 nightly, and I'm still using the hydrocortisone cream.
I feel a little down today---maybe it's because it's dreary outside....but, really I'd rather have the low temp's, than the ultra high's we were having. Something about coming out of the hospital, with reeking sunshine, always made me a bit ill.... I'm enjoying the coolness today. I think it's barely 60 degrees.
Kayla--what are they saying is causing your high temp?
Are you taking something other than Tylenol? I hope so. You sound like you can use some major relief.
I'm here for you, if I can help in any way. If you have any drug questions, Linda's good with those---and of course, we have our "cheering team" of Alison, Ails, and all those other lovely people.
Surround yourself with good, loving thoughts.
Light a candle. Meditate. Or call someone, if you're up to it.
p.s. Please let me know what the nurse tells you---Have you tried a heating pad? I practically carry one with me from room to room.
The best of luck to you, sweetie. Something must be awry---
You're probably gone now, but please, when you can, let us know how you are.
I think I remember both Ails & Amanda had to be hospitilized during chemo, but I can't quite remember what their individual problems were---but, look at them now.
You're in my prayers.
Please post when you can.
I'm here to tell you off!! You CAN and you WILL beat this. I know that sometimes it sucks but what makes you bad makes you better!!
I was hospitalised for about 3 weeks in all. In for 5 days due to infecton in central line - thought we had it beat so let out - only to return with neutropenia and sepsis - had to have the WBC injections daily - hmmmmmmmmmmmm no need to tell you gals how much fun that was!!!! On the plus side managed to catch up on my trashy book reading - including Sharon Ozbourne's auto biog - and rubbish daytime TV.
I know how tough it is but you're both damned strong ladies and you're gonna kick this cancer's arse!!!!
Ok, I'm with Ails on this! You can't you just can't think that you're not going to beat this! You're mental health is just as important as your physical one! You really should speak to your doctor. They want to know when you're feeling this low. I saw a psychologist twice during mine and it was just good to know that there are people out there to help you no matter what the problem is or how trivial you think it is. If it is making you worried then it is not trivial.
I was kept in for a week with a temp of 41oC and a flu thing. But i was in my own room and got to watch trashy TV too. It's the only time I've ever watched xfactor!
You will beat this. you will be where Ails, Alison and I are now in a few months! You can't think otherwise. I know how difficult and daunting it seems. I hope you feel better soon.
I just found your new posts. I am sorry to see Kaylar having a tough time.
The back pain and fever leads me to believe she must have a kidney infection or a UTI. Must be careful of sepsis when neutropenic. If she did not drink her water the bladder gets inflammed and infection will set in quickly. Poor girl. Hope she checks in soon so we know how she is. She may have been admitted for fluids and IV antibiotics. Kaylar check in when you can. I know how discouraged you must be but you have a good chance of beating this so try and stay strong.
Singer, Sorry you are not feeling well. You will get there before you know it.
Just look how far you have come.
Ails, You just keep reminding these great ladies that before they know it they will be where you are.
I am going away with my daughter for a couple days. She is on another
business trip and she invites me to go with her so that we can have some
mother-daughter time shopping and such. I hope that when I check in again that Kaylar will have posted.
I sure hope that everyone is ok. No one is posting so I assume that you Singer must not be feeling good and Kaylar are you in the hospital or something. Please post so that we know that you are ok.
My brother's oncologist is saying that the biospy slides that he reviewed prior to him going in for the transplant he is saying that he would have gone ahead with the transplant and he does not see what the other docs saw. He reviewed all the slide along with two pathologists and they all agree. The transplant docs are sticking by what they see. Now my brother is in the middle and the transplant team said they do not want to do the transplant unless the bone marrow bx he had yesterday is clean. Talk about a bunch of crap. My brother poor brother is so discouraged. His oncologist said that if they can not come to a decision he wants my brother to go to Gainesville, Fl
to have the transplant. How can these docs not be on the same page I do not know but my brothers life is in their hands and the window of opportunity is getting smaller while they toss this around.
Please post soon.
My last post was Sunday, I believe. I thought I was doing pretty good---WRONG! Come Monday morning, I knew something was wrong, but couldn't put my finger on it. I'm taking a multitude of drugs, and trying to take them properly--but, this time added Ativan to the mix, due to nausea. My husband went out (he almost never has left me--wouldn't you know?) and around 6:00 I rose from a nap---went to the freezer to get ice cream, and BAMMO---fainted! I hit my head on the stove (big noise, I remember) and somehow I managed to get back to bed and wait for my husband to come home. I had a rough night-- just couldn't seem to eat or drink. Then, come Tuesday, I went outside. The humidity was killing me --- I started feeling faint again, so I called my chemo nurse to report my fainting...she talked to my doc---and made me go to Emergency. To sum it up: I had low (terribly) blood sugar. It was "34" ...... The nurse looked at me and said, "You NEED to eat and drink." They gave me, is it "glucose?" in my drip...said I was dehydrated, and proceeded to give me tons of x-rays. Chest, head ct scan, lots of blood work (I have a bladder infection--taking Cipro) and MADE me eat an awful, awful turkey sandwich. When they sent me home, they gave me the prescription for Cipro (antibiotic) and potassium....told me to eat EVERY 2 hours. That was horrible. But, I've discovered smoothies again, and THAT I can stomach. I practically lived on them, when I was well. Why in the world didn't I remember that a protein shake resembles milkshakes---PLUS, they're good for you??? duh. I also like to add a banana for the potassium, which I guess was really low, too.
I'm feeling much better today, although I'm very nervous. I just took a .25 xanax. I think my mind is doing it's "racing" again.
I hadn't seen my Oncologist for a long time and saw him yesterday. He's actually "pleased" with me. Go figure. I wasn't expecting that.
I'm starting to realize this chemo is a bit harder for me, as I go, than I thought. I thought it would get easier. I guess everyone is different. I suppose it's my immune system really taking a beating, right?
So---now my dining room table is so full of medications and calendar-scheduling--I don't know if we'll EVER eat at that table again. No...I'm kidding. I can't wait to put all these drugs in the medicine cabinet where they belong !!
I actually feel stronger today & I've been missing talking to you guys.
This is the first post I've read, so I haven't seen Kayla, either. Please Kayla---post if you can.
Oh...the other reason I haven't been on here---my eyes. I couldn't watch t.v., read, etc...until yesterday. The headaches just aren't worth it, so I've been living my life (the last few days) in as much darkness as possible. I'm starting to feel like a bat in a cave !!!
Linda, I'm so sorry about your brother. I start feeling sorry for myself, and then I read posts like yours....and I know Alison is having a hard time, too---of course poor Kayla, having the hard time she's having...
I realize I don't have it so bad. I think I'm a survivor--even though it gets soooooo hard sometimes. I actually thought I'd died, when I fainted. I was lying in my bed, going, "Did I die??? Is my body laying on the kitchen floor???"
Rather bizarre thoughts, huh?
Well, no....I'm alive & well (relatively) and coming around, once again.
Can I do 2 more of these?? Yes...I have to.
The good news (Thank you, God) is that, after the next one (next Friday)---ONE more.
I need positivity more than ever.
I missed everyone here. I know I'm writing a book, but it's so therapeutic to write this down, and I NEED everyone here.
I'll go back and read the other posts, although I've noticed everyone is a bit quiet this week. Maybe it's just the summer winding down, and everyone getting "back on track."
Love you all.
Hi Linda, I am so sorry to hear about the indecision on your brother's treatment. It seems to happen often that doctor's do not agree on the best treatment options, but I guess we have to trust their judgement. The problem is that the patient is stuck in the middle. I hope it is resolved soon.
It is disturbing when we do not hear from people who normally post quite often as we always worry about them! I hope we hear from Kayla and especially fairylights soon, as we have not heard from her in weeks. Singer, I am so sorry you have had such a rough week. It sounds horrendous. Hope you feel better soon.
I feel fine....got my 6 month scan next week so we will see how I really am!!
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
So nice to hear from you.
Yes, I know we're all concerned about our "loved ones" on here.
I'm like you--especially concerned about Susie (Fairylights) and Kayla...and of course, Linda's brother.
I'm sure they're in good hands & I know we all certainly pray to hear they're all doing better soon.
I know when my scan comes around, I'll be anxious, too. I'll be having a Pt Ct, which from what I understand is a combo of "pet scan and a cat scan." The doctor told me the hospital just purchased the machine & it's very precise. I can only imagine the cost. I was appalled recently, when I got my bill for my Neulasta (WBC) shots. They're well over $1000 each!! Of course, luckily I DO have insurance, but I still can't imagine what's in those shots that's so expensive. Gold? It's absolutely crazy, here in the States concerning health care. I've ranted about that before---does no good, huh?
Have you lived in the Bahama's all your life? It sounds like a glamorous place to live. My husband has wanted to move to the ocean for years--but, due to our responsibilities with our parents, we put everything on hold...which I'm not sure was the best decision, in retrospect.
I do believe everything happens for a reason, though---and through this whole journey, I think I value life much more than EVER before.
The best of luck on your scan next week.
You have such a wonderful outlook on everything---I'm trying to be more like you!
Yes, "sucky" is a good way to put it! LOL!
Today's better, by far. I just finished off a pot-pie--almost 700 calories!
At least I'm eating & drinking---that makes a big difference.