Starting Chemo, November 2013 Group
Comments
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Thanks to all for all the great scarf links! I'm now overwhelmed with choices.
Up since 5 a.m. because my dogs thought it was time I ought to be up. Now they are both curled up next to me, and *I* am wide awake. Gah! -
Here's hoping everyone has a GREAT THANKSGIVING!! Me? I'm going to try to pretend, just for today, that my life hasn't taken a very unexpected, and unwanted, detour. Except for the talk I need to have with my granddaughters about why I'm still so bruised and can't kiss them. Then forget. Hopefully. Third day out from my first round. Hasn't been too bad. I do believe that chemo-brain is setting in though. And my mouth seems to be getting a little sore. Nothing I can't deal with.
Everyone, try to have a good day. -
Ellen: sorry to hear that you are facing this alone. It's never easy though. You sound like a strong lady, so keep up your strength whatever way you can.
Wrenn: Pain sucks. My thoughts and prayers to you. I too am in a lot of pain.
Lisa: The 'cancer conveyer belt' sounds funny too.
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QuirkyGirl: I am currently on 3 kinds of antibiotics. My blood pressure has stabilized. Before it was too low. My temperature is still spiking, but not as much as before.
PatAlameda: Yes, unfortunately, I am still stuck in hospital and praying hard to get out of here soon. -
Good morning everyone!
Amazonwarrior, I'm sending temperature-lowering vibes your way and hoping you get sprung soon!
Pat, my daughter came home from college blowing her nose and coughing up her lungs. She just finished being treated for pink eye before she came home. Ah, dorm life.
Audra, after my first chemo, my husband and I went to Costco too! He let me go in but he wouldn't let me have any of the tastes. I may as well have stayed in the car! I hope your bloodwork improves.
Tonilee, thank you for your great post. I think I'll "trim" my stubble this morning down to 1/4". What's there continues to grow and makes my wig sit funny. (Only I can tell.) My dad had male-pattern baldness and shaved what hair he had every Sunday morning in our bathroom to about 1/4". I'm going to channel him today!
Smrlvr, I DEFINITELY can relate to control about who gets to know my situation. I think about who will make me feel safe. I have one "friend" whom I've had mixed feelings about over the years who found out about my cancer in a totally legitimate way. She initially was hugely supportive about the cancer, so I let her in, but now I see her resorting to sapping the energy out of the room talking all about her self-created stupid drama. I was trying to turn over a new leaf and see the good where it is, but she's falling back into the "life's too short" category.
Ellen, I'm so sorry for all you're going through alone. I'd never been a person to reach out to others for help, but I am now, and it does help. I hope you have strong people you can tap into.
Wrenn, I hope your pain gives you a break today!
To everyone, thank you. This forum has been such a gift. Cancer is on my mind all the time, but I don't want it to be on my family's mind all the time. This gives me the outlet I need, and where I learn so much from such fabulous women. I am grateful to all of you!
Happy Thanksgiving! -
Ellen-
Bless your heart! Hoping you have good friends and family to help you - husband or not...and praying for your healing as you deal with this too. That is a lot to handle.
Wrenn- Hoping the bone pain goes away today! Maybe Advil? But you'd better ask as my dr said no advil...
I had a boxing match type analogy told to me by survivor of this breast cancer thing! She said her sister in law got her a pair of camouflage underwear and she wore them every infusion as she was 'going into battle' and had to be prepared...
I LOVED it and the boxing match one too! We are in battle and weary and needing support and encouragement and I am so Thankful for all of yours!
Happy Thanksgiving! We really have a lot to be thankful for...at least we can fight this and WIN!!! -
Starting on Abraxane today, 11/29 for multiple liver mets after 9 years of NED. Here's hoping for a good response. Happy Thanksgiving to all in the US, enjoy your special day. -
HAPPY Thanksgiving to all my beautiful Ladies!!!!! -
Hi!! been resting...TIRED!!! Hubby went to Boston Market and got us a YUMMY DINNER!!!! DITTO....to all posts and prayer! hugggs to you all!love from your fellow baldie!! a HEALING and WONDERFUL DAY! love T're!!! -
I sure hope everyone's day was as good as mine. Lots of laughs as I forced my very girly, non-cooking daughter to use her hands to break up the cornbread for the dressing. I'm pretty sure I learned the word 'EEWWWW" in several languages. The control freak wasn't today. And though I didn't eat a lot, it was wonderful. Feel great, no queasy at all. Just very tired. But very grateful that we were all together. -
This may have been the best Thanksgiving of my life. Never have I had so much to be thankful for and so keenly aware of it. -
I think if I remember this Thanksgiving at all, I will simply remember it as being "tired." My own fault, I think; I got TOO much done yesterday, and then today, I was so afraid I'd get sick all over my MIL's lovely Thanksgiving dinner that I really did stay "on top of" the nausea meds. Why is it that they ALL make you drowsy? By the time we got home I could barely stay awake. Actually, while we were still THERE I could barely stay awake lol.
Hopefully I'll do better tomorrow for going to my mother's house. -
@Fitzy: I hope the Abraxane knocks that right out of your liver and gets you right back to NED again, and for good this time. It can happen! Keep the faith. -
Hi all...man I think that chemo brain washed with lupus brain has mad it totally impossible to keep up with everone...I thought having a Lupus fog was bad but Im starting to thing that I dont have any brain cells left in my head.....I feel like I am far beyond alzheimer's....I can hardly keek up with what day it is or what year it is! gee gooolllly wiz! Not only did I loose my hair but by brain leaked out thru my hair!!!! lol......I want so much to read what is going on with everyone....but my brain is like MUSH....and I only had one chemo dose....BllllllLLLLLaaAAAAbbbbbAAAbbbbzBBBBaaAAAbb...BLBLBLBLBBLBLBL......lol! I know thia is only temp and my head will clear.....oh my.....If Im not sleeping for like 20 min then up.....the dreams in the short term are crazy!....Oh my....did my brain get cut out with my hair!!!....lol!!! NOT!!!!!!!!!!!!!!!!! Will be a wonderful story to tell the GREAT GREAT grandbabies!!!! Hope yall had a wonder turkey day!!!\ -
Lisa, that was me yesterday too! Thanksgiving was post-chemo day 3 for me, and I'd done all the prep work I could on Wednesday. Yesterday, the Zofran and Decadron definitely were helping, but just to make sure nothing got worse, I took a Compazine too. I think I just stared at everyone the whole day as I tried to keep my eyes open! I did manage to eat a huge meal at 4, pie by 5, asleep watching tv with my son by 7:30, in bed by 8:30. And up at 4 am (thanks, Decadron).
I hope you have a nice and awake day at your mother's house today! -
@Bec: I guess I feel better knowing I'm not the only one then! lol. Went to bed at about midnight last night and my husband just woke me up a little while ago; at 10:30. I was up briefly around 7 this morning, letting the dogs out and going to the bathroom, but I obviously needed a good long sleep,and feel much better for having had it. Now hopefully I can stay awake at my mom's house today. So far, I do feel better today than I did yesterday right after waking, so that's a good sign, at least. -
HI all! Thanks Paulette!
Feeling more 'myself' the last couple of days and doing more, seems the energy is same (low) no matter what I do so I might as well live this 2nd week up...
Sleeping is HUGE, I'm feeling so much better having slept the last 3 nights for 8 hours! It really helps me! Still tired through the day but just overall feel a little better...
I still haven't lost my hair! What's up with that?? I am even washing it daily and drying it! AND my leg hair continues to grow??
I am hoping it can hang on til my scarves and hats arrive...my wig is looking more fakey now that's is closer to time to wear it...:) I thought it was great when I first got it...:)
Happy weekend...I am shopping online like crazy, trying to get it all ready for Christmas early...funner than fighting the crowds for sure, but missing that holiday feel too.... -
audra - I didn't lose my hair until day 24, unusual, but it does happen.
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Is it worth a call to nurse if a bit of bleeding with diarrhea? Sorry TMI -
Yes, Wrenn, yes! Call! I hope everything is OK! -
wren - yes, you should call, but it is also "normal" to a certain extent because of the soft tissue damage done by chemo drugs. Some people also have fissures that cause a bit of bleeding, but that blood is usually bright red or pink on your toilet tissue. There is no such thing as TMI on these threads, by the way!
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Wrenn- I think we should call about anything that doesn't seem right. Those drs and nurses wouldn't be in oncology if they didn't want to be bothered, or even if they thought they were being bothered. I believe it takes a special sort of person to work in such a field and I'm sure that no question is too small for them. I wish mine were in today. I believe that the "C" has set in and the correctol hasn't helped.
I'm feeling pretty down today. Weepy and blue for the dumbest reason. In my 36 Christmases in retail this is only the 2nd one I haven't worked. For the last 20 Black Fridays I've put bells on my shoes and worn a pair of antlers to work. From today until Christmas I would wear them, and a different pair of Christmas earrings every day. I didn't even bother to get them down from the attic this year. Now why would such a smallish thing make me cry when the big things haven't. Then my husband, darling that he is, tried to make light of it while he was home for lunch. Duh, leave me alone.
Audra- never been shopping on Black Friday in my life. But missing the crowds like crazy today. -
wally - have you tried Miralax? My BIL is a gastroenterologist and this is what he recommends.
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Audra: I haven't "lost" my hair but I sure DO shed. My hair also has lost its life. It sits atop my head like a dead animal, therefore last night I wore my wig. First time, I was very happy. I've had so many delays with this from infection, that finally wearing my wig feels like a triumph. See new avatar!
Wallymama I think I understand. We all just want OUR lives back, back the way they were before any of this started. I think you should get those earrings down and wear away. You're not weepy and blue for a dumb reason at all. Wearing bells and antlers and working the holiday season was your normal self. You've had it stolen. Me, I get weepy over having to wear gloves while doing dishes. No joke. My self image is of a unfussy outdoors woman, not a sissy girl who wears gloves to "protect her manicure and not touch germy stuff, ewwww." -
OHHH!!! You all are great!
I went out!!! Drove and all!!! Went to Walgreens as I thought it would be less crowded and un germy and it was! My poor daughter, I walked down EVERY aisle and looked at everything! Bought a ton of stocking stuffers, I'm worried if not feeling great I won't get those before Christmas! I feel tired now that back on the couch but triumphant to getting out and seeing the world! AMAZING how isolated and depressed I feel just being here for 2 weeks! WOW! I am just so used to being busy and out and all...it is so surreal still.
My thumb has definite bruise on nailbed and the top is peeling like I was in tub for 2 days, only that finger and nail...weird...and my hair is starting to fall I think...little strands hanging and just seems to be falling piece by piece...I am still going to wait awhile hoping my hair cover things arrive...I am soooo cold I think I would freeze at night being hairless...
OH! They called from hospital where I'm getting port and I am NOT happy...an RN (not anesthetist!) just plain old RN - which I used to be- called to say he is going to do my anesthesia//???? I asked if he was anesthetist and he said no but he has done this for years!!! Anyhow I'm not comfortable with that ....I want at least a nurse trained in anesthesia....am I being weird or what?? I called my plastic surgeon (family member) and he said a lot of places use nurse anesthetist but not just plain nurse and said I should ask for anesthesiologist.!
What are your thoughts?? I know it is not HUGE procedure but still accessing a major artery!!! I called my oncologist office with no answer, they must not be in today??? -
thanks everyone. It was just that one bit and has settled. I tend to trust you women more than onc staff. Many times they seem to not know.
Pat your wig is lovely and i get what you mean about wanting to get things going.
Apart from raw stomach today is not too bad. I couldn't eat or drink anything yesterday but can today. Not much but yesterday it was impossible.
I'm sorry for those feeling emotional. Holiday time is hard. Hug yourselves tight. -
Patalameda! I like your wig too!! CUTE!!!
Wrenn-
I'm glad you are doing better, and it is a sad time of year to deal with this! But we are in it together and in it to win it right?
We will make it through! -
That't right audra. We will -
Audra -- Many places, including the one that placed my husband's port, do not use true anesthesia for the port placement (I had mine done during surgery, just for one less procedure). They essentially use drugs so that you are not completely under, but not aware of the procedure. Kind of like colonoscopies. -- Ellen
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audra67- My BS put in my port when I had my UMX and he was the one who removed it this past April. Both the installation and deportation was done at the hospital in a surgical unit with an anesthesiaologist and I was put under. I know others have had their ports put in by a radiology department and without twilight anesthesia. I think I would ask about who is doing what for your port installation and request an anesthesiaologist. At this point, you need to have a comfort level with this situation so you can have a little peace of mind. Hopefully, you will feel a little better about this situation.
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Pat- my hubby would be really worried if I wore gloves to do dishes. I just spent the last 45 minutes walking around my very large, hilly yard . When your yard is 300 feet long you never need to leave it. I checked out what parts of the lilac bush needs to be trimmed out. Decided that one of the forcynthias needs to come out. Admired one, lonely leftover rose bud. Planned next year's veggie garden (last year's went to pot because of my hernia surgery in Aug, and my DH wouldn't know a bean plant from a dandelion with a magnifying glass). Watched the younger 2 dogs play, while the old one sat on the steps and looked at them like they were mad. Let the one who hadn't been outside in 2 months without a muzzle without it because he eats mushrooms and has nearly died 3 times from it, only to watch him eat grass and promptly barf it up. Drained a little leftover water from the pool cover. Plotted if I could get the patio chairs put away without DH realizing it, realized that was a big NO. I guess I just needed to get out and stop thinking about what should be. Let what is be. Probably won't get the garden in at all next year since my mx will be around May, but I can still plan. And I will. I'd rather be in the yard any time than doing dishes. Even if I can only walk around and plan. Much better than dusting and vaccuming, which the man of the house is better at than I am anyway. Our usual summer Sundays is me in the yard weeding or whatever, him cleaning and doing laundry. Works great.
Anyway, the fresh air and nature plans has made me feel much better. I may even go out tonight for a bit. I figure the next big breakdown will be Christmas Eve, when I'm home alone and wondering how my gang is doing. Then I'll just bundle up and go outside.
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