Starting Chemo, November 2013 Group

Thanks MelroseMelrose, you're a honey!

Hey Paulette, sorry you are having such a rough time but glad to hear from you again.

Ellis, about the cute nurse, as I always tell my husband, married, not dead, looking is just fine.

Tonilee, I made myself a chart with all the drugs on it so I could write down when I took what. I would never have remembered otherwise. And of course you will feel normal again. We will be normal again. This will not last forever no matter how it seems now.

Jab, I have good days, sleep days, tired days. No way to tell until I'm up and trying to get going.

The nether-hair is starting to go. Itches like crazy. The head is starting to feel very strange and painful. I guess I'll go Saturday and get it buzzed. Tired of wondering when it might go anyway.

And my eyes. One is scratchy dry and a bit blurred, but the other is fine. Concerns me a little because the one that is dry is the one I had surgery on last year. Had to get the muscle repaired so I quit seeing double.

Audra, I am so glad that my center has private rooms. I really wouldn't to be in the room with a bunch of other people for ANY of this, much less a shot in the stomach.

Feeling pretty good this week so I decided that I'd clean the house good for Christmas. Think I may have over done it. After 2 days of intense cleaning, I'm totally wiped out. And a headache on top of it. At least half of the house is finished. If I can't get the rest, who cares.

Ellischestnut: I'd love to have my port up on my neck somewhere. Mine is under my clavicle and makes it impossible to sleep comfortably on the side that I've fallen asleep on for as long as I can remember...until now! It seems like a minor thing, but if you don't sleep well, it makes you start the day standing in a little hole instead of on a stepping stone.

Had a very weird day 5 yesterday. Strange dreams that I had to pull myself out of. Odd thoughts and no way to determine if I was wired or tired.

Audra: about 6 hours after I posted, the bone pain started. It's still here but I am tolerating well since it 's a sign that the Nulasta shot is working. Got sick a few times this morning and have a bit of a headache. Could be dehydration since drinking is such an issue for me these days. So glad you were able to get the shot. I was given the option to have it in the stomach or in the back of the arm. I choose the arm and nurse Nancy, a lovely woman, warmed it up for me because she said it would help reduce the sting. I'll be curious to see if it takes 4 days for symptoms to show up for you too.

Bec: thanks for the Remeron mention. I have had the same sleep problem for a couple of years now and just lived with it. I'll be asking about this now.

My husband told me last night that I looked 100 times better than the 1st round. Hoping to parlay that into a great week. Slowly though. No extensive cleaning on my to do list yet.

Have a truly good day today ladies. I'll be praying for us all.

Pompom, I'm having the weirdest dreams too! The other day during a nap, I dreamed I was walking in this really crowded park, along this beautiful lake, and some really tall woman with very long black hair was running down the path just knocking people down. When she got to me, I grabbed her by the throat, said "you're not knocking me down bitch". Then I knocked her down, smacked her in the nose hard enough to bloody it, picked her back up, and threw her in the lake. Hubby said that the woman was my Big Ugly, and my actions was my fight against it. Me? I think it was just another strange dream.

Audra, if the white head really bothers you, get some Jergens Glow lotion. It just adds a hint of color, gradually, so it doesn't look fake. I use it on my legs at the start of summer so I don't blind anyone with the white glare from them. And yes, I think I'd feel good enough this week for sex. Last two weeks, not so much. Maybe we'll give it a shot after I buzz the head.

ellis - I was given the option of learning how to do the neulasta shot. I can't inject myself...just a mental thing about me & needles. I have a community care nurse come give me the shot at home...covered by insurance, thank goodness. Why could you not give the shot yourself??? It is just subcutaneous...not hard to do (if you don't have a mental block about giving yourself needles that I do). Could you push the nurses a little to teach you?? Diabetics give themselves needles all the time. It can be learned.

My port is pretty high up, and my onc made a comment when he first saw it that sort of indicated he wasn't crazy about the positioning of it, but nothing since. One thing about it, it doesn't really get in the way of ANYTHING, except when my little dog wants to put her paws on my shoulder and snuggle, I have to push her to the other side. (She likes to lick ears. I don't know why, but she does it to us,and to the other dog, and to the cat when he sits still for it.) What they DID have to do with my port yesterday---both for the blood draw, and when they got ready to push the adriamycin, was to tilt my recliner ALL the way back--damn near stood me on my head---and then have me rock my head back--to get the flow going the way they needed it to.Hopefully all that won't get any more dramatic next time; I don' see anything in there I can swing from my knees on....

Wallymama--the mental image of your husband trying to buzz your head made me giggle. I needed that this morning. Thanks. And yeah, I think most guys do have that same thought...though why MINE would be excited, I dunno; I've always kept the fur down there very short and neat because it's just more comfy that way, for one thing, and for another, it helps to prevent me from getting urinary tract infections in the summertime. So it's not like it was ever a "jungle out there" in the first place! Now that I think about it though, he HAS mentioned about once every six months that I ought to shave it.....and gotten a very firm NO each time cuz I tried that once many years ago and never wish to itch that fiercely again. :P

Pompom: Dehydration will definitely give you a headache. Have you found nothing you can enjoy drinking? Tried drinking thru a straw, or just putting crushed ice in a glass and drinking it as it melts or chewing it?

@Audra: I've felt good enough for sex a time or three, yeah. It wasn't MY idea (lol) but my husband is 10 years younger (he's 39,) than me so it does cross his mind a little more often. The literature that we got from the onc's office said that for 48 hours after chemo a condom should be used... but yeah, for 48 hours after chemo it would take more than a condom. Condom and a sledgehammer maybe bahahaha. Anyway, after that, the literature indicated that we should be good to go. Hubby is good at choosing times when I'm feelng good and not queasy or achy or anything like that, so it's been quite.... normal....when we "did it." Very nice, even.

My blood work yesterday was all good where the WBC was concerned, so I reckon the Neulasta is doing its job. The printout of my blood work did show a few things that were slightly high or slightly low, but nothing the onc seemed concerned about; he just said "looks great!" and didn't give me any warnings (like to stop eating at Bojangles before coming in so that my glucose level wouldn't be unnaturally elevated haha.)

I am LOVING the hats and scarves, but it's probably because we went on a scarf-buying spree, and then yesterday when we got home from chemo, my mother-in-law (she's so sweet) had been on ANOTHER scarf-buying spree and left them on our front door, so I have this huge multitude of long, flowy, brilliantly colored scarves to dress my head with. I've always loved that look, anyway. I may never grow my hair back out.

I'm having weird dreams too, but that's nothing unusual. What IS unusual, and is really bugging me, is that I USED to have "lucid dreams," where I was asleep and dreaming but i KNEW that I was asleep and dreaming, and sometimes had some measure of control over the dreams. I used to have those at least once or twice per week, and now I have no had a single one since September, when I had my first biopsy. I MISS my lucid dreams, and truly hope they come back!

Extreme nausea (just nausea, no actual throwing up) from last night, and I feel back to chemo-normal. This is a good thing since we have to ride an hour to and an hour back for the Neulasta shot today. I seriously never want to do that while nauseous.

Also got a weird chemo schedule for next round....three trips instead of two. :::Sigh:::: Going in on the 23rd for the lab work, then chemo on they day after Christmas , and Neulasta the following day. On the upside, that means that I SHOULD feel fantastic (knock on wood) for Christmas, so yay!

Lisa....sledgehammer...lol....how about a FULL ON FRONT LOADER carrying a LOAD of LARD!!!!!!! ARGGG...BTW....my hubby is 52...same and I....and he STILLLLLLLL is a toddler when it comes to GIMMMMMMMIE CANDY!

my little animal!!!!!!

Bec - I have had the same sleep problems as you since before dx. After, I couldn't sleep at all and my PCP gave me zanax, but wants to switch me to ambien. I am going to mention the remeron. Thank you. My girls are coming home from college for a 6 week break. This is going to disrupt the quiet and I am so worried about how they are going to react to me not having my hair.

Tonilee, I had a meltdown the other day when my friend came to buzz my head. I felt bad because it was coming and I couldn't hold it in any longer. My husband was gone for the day at the patriots game and she came to help me and I was a scared blubbering mess. She did not know what to say because she has never been with a person facing what we are! I felt bad but I had to explain to her that sometimes I just can't keep it together.

I have been having really vivid, colorful dreams too. To me it is like watching the Beatles magical mystery tour movie. Bizarre.

My SEs were not as severe as last time but it took a few more days to recover. This is my off week and I feel ok, still not quite the appetite and the headache is still there. I had some bone pain yesterday, a week after neulasta but not too much because I have been taking Claritin.

Lisa, I also have the indigestion and heartburn but I have been taking Prilosec daily which is helping.

I hate my port and can't wait for it to be removed. I used to sleep on my stomach but that hasn't happened since the night before my BMX. I also sleep with a really soft pillow next to the port so I can at least sleep on my side.

Do you ladies get copies of your lab reports every time you have bloodwork done? My mo just told me everything looked normal and that was that. I really would like to know what my counts are and what they mean. I should ask for the reports.

Paulette, I don't like to leave my house either. I never was like that before.

To all of you going in this week, good luck and wishes for minimal SEs.

smrlvr...is that you and your hubby? dare I ask!

Ya the dreams are Wildly vivid....thank goodness for spell check I think I'd spell THE wrong at this point!!

Yes...I not only get copies of the reports from the MO...I make sure the lab did the correct tests! ESPECIALLY after this week them F%*((%*^(%(&*%^ up royally and telling me it is OK to have a ANC of 400!!!! I actually have them FAX them to me as soo as they get them!

Bec & Lisa...you can imagine my dismay to the "NN" saying...you are already on so many other meds...you dont need anything to sleep! Funny how when the anetheiologists try to put me out THEY CANT! SOOO...why and who are you to say my meds are "enough"!!!

Tonilee...HI....meltdowns are ACCEPTABLE!!! I SURE had a real psychotic break last night. It was really the first one since Dx in july. Had small quakes...but not a sure fired...screaming at the top of my lungs lunatic meltdown since then! Come to think of it....I dont think my dRNhubby had either. I guess we both had ALOT of pent up GRRRRRRRRssss coming! Then you add in no nookie for him.....OH MYYYYY....VOLCANIC BLOWOUT! Hopefully when he comes home...he'll be better. Generally he cools off after dealing w/a bunch of sick vets all day! I need to remind him he CAN't bring me flowers though...boohoo....I think we both blew both sides of the brain last night!!!!! I was screaming in a voice I had never heard before and crying hysterically to the point my temp went to 99.9 (VERY HI for me!!!) I am normally a ZOOMBIE @ 95-96.5.....lol....maybe I'm dead and dont know it!!! Perhaps that is why I shaved off my zombie patched hair so fast...to ignore the reality!! lol.!

Hoping for MIN SE this week for all! Seems yall are either a week ahead or a week behind me. I cant keep track....believe me I TRIED to graph it!

ohhhhhhhhhhhhhhhhh....bear with me today! I hope someone at least chuckles! "she sayes as she looks at her lady scape again....to really believe that she looks like she is WATCHING for that first pubic hair again!!! But sadly finds...less than more are rising in the lady land!!!"

One GREAT NOTE!!! lol...my hairdresser called to schedule my haircut!!!!!!!!!!!!!!! lol............

Not unless she wants to polish my head and put rhinestones on it! Anyone know what Rhinestones and glue and chemo/immune safe!!????

Paulette--- Here is the computation to help you figure out your ANC.

Jun 11, 2012 03:48pm dancetrancer wrote:

So here's the scoop on the whites. It is not just your WBC.

The number you want to examine is your ANC (absolute neutrophil count). ANC = white blood cell count X % of granulocytes (they are also called neutrophils). There is a more complicated formula, but this one gets you close enough and is the one I use.

For example - say your white blood cell count is listed as 3.0 K/uL (scale is important - so look and see how yours is listed) and your neutrophil/granulyte % is listed as 25.2%. You convert the WBC to 3000, multiply that by .252 and get an ANC of 756. This would be Grade III neutropenia.

Grades of Neutropenia

Grade 1 = 1500 to 2000 = slight risk of infection

Grade 2 = 1000 - 1500 = minimal risk of infection

Grade 3 = 500 - 1000 = moderate risk of infection

Grade 4 = < 500 = severe risk of infection

Smrlvr, my first PCP gave me Xanax too the day I went to him with my suspicious thickness back in August. It helped me with anxiety, but not with sleeping. I've saved what's left in bottle for high stakes days. (The last one I took was for bone and CT scan day...quite helpful!) When my daughter came home for Thanksgiving, that was the first time she'd seen me without boobs or hair. She was actually okay with everything, even my BMX scars. (She helped me redo the K-tape I'm using to get rid of a weird pucker where a drain was.) I think it's true that our kids are more resilient than we think. I know what you mean about the quiet being disturbed though. I like having the house to myself all day to whine and be pathetic; now I'll have an audience.

Paulette, I'm glad you're back, but I wish you weren't having such a hard time! At least know that your sense of humor is helping all of us!

I learned some random things at my MO appt. yesterday. She said that those of us who have done chemo usually have an easier time with radiation. Not that it's a walk in the park or anything, just that after having survived chemo, we won't find radiation as hard to endure as our non-chemo peeps usually do. She even said she thought I could go back to work part-time as soon as I'm done. Yeah for that b/c I think my actual job is held only until April 10; after that I'm guaranteed whatever job in my school district is available.

She also thought Zofran was the culprit for my post-chemo headaches. so I'm going to skip that and use Compazine when I need it. As for light-headedness/dizziness (anyone else have this problem?), she said it's the Decadron. It (SpecialK, help me out here...) does an uber version of what our adrenal glands do, so much so that my adrenal glands have probably stopped producing adrenalin b/c they didn't need to. So, between my usually-low blood pressure and stopping Decadron on day 5, I crash. My low blood pressure is actually protecting my heart from the adriamycin, but she wants me to eat more salty foods to boost it a little which will improve my dizziness. And also make me blow up like a balloon.

Re Neulasta at home, my insurance company is making me do it at home...I guess it must be cheaper for them. It hasn't been a big deal. My tummy fat seems to have no feeling!

Re Taxol, my MO said that she'll have me do Neulasta for my first Taxol, then we'll see if I need it after that (she expects I won't). Anyone doing Taxol need Neulasta? What about Emend? I forgot to ask yesterday about what supporting medications I'll need with Taxol. I'd love to not need those because their copays are a lot!

My last AC is tomorrow, then I'm halfway done. Wheeeee!!!!! I hope everyone has a pretty good day!

Veronica! Glad S-E-X is going GREAT....

I was radically surprised at how I felt like someone was digging into a dry line of......EKKKKKKK......never had that before! lol....Im sure it will get better!

Wow....leaves and hickory nuts keep attacking me! Im sitting outside enjoying the fresh air....and BREEEEZES!

Verno...I agree w;/the hydration. Though I have had to do so via IV....UNREAL! I look even younger! lol....but w/o hair! UNLESS I put on my blondie wig! I havent had the courage to go in public w/blond hair yet....funny how I will go bald...GO FIGURE!

Can I just CRY NOW...............I LOVE this time of year...now I am likely facing going to the hospital for Christmas....... .......I WONT! I dont WANNA!!!!!!! I already spent 74 days (not counting the other times)

Im having a pity party!!!!!!!!!!!!!!! Wanna join me!!!!!!!!!!!!!!!!!!!!!!!!!/??????????????WWWWWWWWWWWWWWWWWWWWWaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

Oh....update on the "NN".....apparently the RN I LIKE is the MAIN RN! but the "NN" keeps jumping in!!!! hmmmm who is this %*&(%()(....I tried to be so kind....for almost 10 weeks now.......but ENOUGH of her PRETENDING to know what the MO knows! How many others has she hurt or hopefully not injured....