April 2011 chemo

artiecat

So - today is Monday - had first TAC chemo las Wednesday...I am still exhausted and a little loopy.  Is this tiredness the way it is going to be?  I really want to go to work!

Wonderful dtr #2 goes home to VT tomorrow - she has been heavensent this week!  I feel so lucky to have two loving dtrs!

kg1234

hi everyone,  having another yucky day.  Not bad, just not good.  I've got really bad indigestion, sitting, standing, walking, every position is uncomfortable.  Also I'm having trouble eating.  Nothing seems right/tastes good...any suggestions?

Kg.

Merilee

Maybe you can eat for nutrition and not focus on taste. Perfect Meal is a powder that can be mixed with milk to taste just like a chocolate shake and is chucked full of good stuff. Just one of many that are on the market.

profbee

Ugh...I hate rice and cream of mushroom soup for dinner--it's all I wanted.  Sore throat.  ugh.  So, I have no suggestions.  LOL!  It totally gave me indigestion too.  Can't win today.

CarlaB76

Thanks for the welcome everyone!  I did go back and read the whole thread, so I feel like I've gotten to know you all a little bit.

I'm having a blah day over here.  My mom left this morning (my parents live in Trinidad) after being here for 3 weeks.  The weeks before that my DH's mom was here almost full time. So this is the first full week that we don't have any help or company.  Still tired, but not helped by the fact that I've been up since 4:00am.

I do want to ask more about food.  My oncologist wants me on a pretty strict neutropenic diet (everything has to be fully cooked).  So he's saying no fresh fruits (unless thick skinned like bananas, oranges, and apples), no lettuce, no raw vegetables, etc..  I get making sure that meat is fully cooked, and no runny eggs, and overall minimizing the possiblilty of food borne illnesses.  But nothing raw?  No yogurt?  Are you all getting these same directions?  I've never wanted a salad so badly!  I used to eat salads twice a day, and tons of fresh fruit.  It's not that I have some amazing appetite, but a tub of yogurt sounds so good too.

Overall, I'm feeling okay.  Mouth is kind of weird today, the roof of my mouth.  And I have a strange full feeling like I've already eaten even though I haven't.  Not exactly heart burn, but sort of that same feeling - just odd.

Tomorrow morning, I go in to do a blood draw from this so-and-so port to see if the longer needle solves everything.  Wish me luck!

profbee

ATE not HATE..okay, I just need to go to sleep tonight and start over tomorrow.

Anonymous

I don't see how they can possibly say chemo makes you gain weight since ngobody on here seems to be eating very well. I had heartburn for two days straight, along with weird "empty burps." Diarrhea, tiredness, random naps, and genearally feeling blue. Plus this nasty cold I can't seem to shake. I am two weeks out (next tx is in two days on Wednesday) and man, I am dreading months more of this.

Carla: welcome to our board, I am glad you joined us!

pawprintgirl24

first day back to work ....it was long since 2 hours of it was getting my heceptin this morning which put me behind all day but about ready to crash!! stayed up in the bathroom all night with the big D!! the dr said thats normal ( and i thought the side effect should be on there way away) he said they should just get better everyday from here on out until they pump me full of them in 2 weeks!! the herceptin made my legs achie all over again like the shot!! totallly bearrable but just a pain! really glad to be back at work around my crazy co workers they really are sweet and keep me laughing. i hope everyone is having a great monday!!!

pawprintgirl24

windless - yeah i have lost 4 lbs in a week!! not good i'm sure!

axtella

I went to work today and ended up leaving two hours early. My blood sugars were high today that I felt like I was out of my own body. Very strange feeling!! Had to get a stool softener this weekend but it doesn't seem to be working very well. Nurse said to drink prune juice....I'm afraid if I do that I will get wicked gas pains. No win situation today!

profbee

I asked about special foods, and they just said, "Everything in moderation."  Really, the message I got was eat whatever you can to get you through chemo, and then after, you can go nuts getting all organic.  That's my plan anyway.    BUT, it weirded me out that they didn't give me a special diet and stuff.  I kept asking for pamphlets like someone was going to give me the answer to all this in a tri-fold brochure on eating broccoli or something.  If it's stressing you out, and/or you're not eating well, you should ask about it.  Is it CRUCIAL or preferable?  Is it something you can TRY in moderation, or strive for, but it's okay not to follow all the time?  I'd ask.  I can't imagine the doc wanting you to be totally miserable over food.

Carla, sorry your mom had to head home--is that your little boy?  ADORABLE!  Believe me, I know the hardest part of all of this is just trying to be awake for my son when I don't want to be!    We don't have grandparents very close by, and I can't tell you how many times I've wished I could call Jack's grandparents to come pick him up for an hour or two and give us a break!     

Windlass--before we started I was freaking about all the info and how they only say, "everybody reacts differently."  I melted down to a dear friend saying, "I don't know if I'm going to plump up 60 lbs from steroids or waste away to nothing!"  I still don't know how it will all turn out, but so far I doubt I'm gaining.    

lorenar

Hi ladies. Started my taxol and herceptin today. Had to be there at 7;45 for second muga heart scan which was good and spent from 9am to 5pm getting chemo and seeing onc. than 2 hour drive home. Crazy right. I drove myself today. So far Im okay but hope it don't bite my ass tomorrow or next day. They only gave me premeds benedryl and pepcid. I didnt sleep i TAKE SO MUCH BENEDRYL to try sleep it doesnt help. I hate to go clear to ohio but I really need something for anxiety to only sleep good. Welllsee huh. I hope you ladies are doing good. sorry for you not.

jackifp

Hello, all, and thanks for a place for sharing of fears and laughs. My first chemo was 4/15; also doing the Taxotere/Carboplatin/Herceptin 6 wk cycle, followed by Herceptin for a year concurrent with 6wks radiation. Feel like I was extremely lucky - no port problems, no reactions other than some flushed face and neck from the H. The hardest part was 7 hrs in the chair as the poison trickled in; I never sit for that long.

I'm so glad to see other teachers and full-time workers on here, as I love my job teaching high school biology, math, and theatre. I've been sharing the biology of this experience with my students, and they are so interested - not only do many of them have family with cancer, but we have 2 students with it, also. Altho I've set myself up for substitutes if I'm not up to working, I plan to be there as much as possible. Today is day 3 after chemo, and other than feeling a bit 'flu-ish', I'm good; heartburn, but that's doable. One day at a time, eh?

I'm doing a ton of supplements under the suggestion of a naturopath, in support of rebuilding all those cells we're so delighted to be destroying along with the cancer beasties.

Hair: Had my daughter cut it short ( first time in 40 yrs), in prep for no hair ("my neck is naked!") and I've asked my 3 grown kids to design and paint henna tattoos for my bald scalp. Those, and a multitude of hats are the plan to help maintain that sense of humor.

CarlaB76

Profbee, yes, that's my son Spencer.  Although, when I think about it, that photo was from two summers ago!  He is such a little fella now, he'll be 5 this July and starts kindergarten in September *gulp*.

On top of my dx this February, Spencer was diagnosed (officially on Jan 20th after over a year of genetic testing) with a genetic condition called Cohen's Syndrome.  There are no life expectancy implications, but it presents with developmental delays, cognitive impairement, rentinal degeneration, he's non-verbal, and other symptoms.  It's quite rare and we thought it was autism at first, but then he developed into such a loving and affectionate kid that we doubted that dx and pushed for more testing.  Much of the therapy that he's been getting based on the preliminary ASD dx are the same services that are recommended for Cohen's so that is a good thing.  All this to explain that it's hard for him to understand what's going on with Mum and that he needs to be gentle.  And I wonder how much of it he gets and really understands.  But a few nights ago *Wed, 2nd night after chemo* I was tired when he got home and was in the recliner in our bedroom.  He came up and greeted me and I wanted to nap so sent him downstairs with Dad.  Poor little fella came back upstairs and banged on the bedroom door and just wanted to sit in the recliner under my blanket with me.  Broke my heart because I should have been downstairs playing with him.

DH's parents are 2hrs and 3.5 hrs away.  So not close, but possible to come in with some notice.  Spencer has had a companion for the past 6 weeks.  I think this will be a hard week for him just back to the two of us and me far from 100%.

KiwiMum

In chair now having my first chemo. I'm in a room with four other women who have been sharing good tips. Two ladies are two thirds through their chemo and have NEVER had a side effect. I hope I'm like them!

Went wig shopping with my girls yesterday. I've settled on an above the shoulder bob. Quite a bit shorter than my long hair so will take some getting used to.

Jackifp - I work full time and hope to continue to through my six months of chemo. I am taking the attitude that some people handle it fine and I will be one of them!

Best wishes to everyone else in the chair this week.

axtella

Carla --

My 8 year old daughter likes to lay on the bed with me and watch tv when I am feeling low. SHe used to brush my hair but is afraid to now. Poor baby. I promised her when my hair was gone I would let her "paint" my hair on. She is quite the artist...I am thinking I will probably end up with an Easter Egg as well  

artiecat

Today is day 6 for me.  About food:  here's what is (more or less) working for me...I have a fruit smoothie and dry wheat toast in the morning - takes pretty much all morning to eat the toast.  Loads of water.  Then soup soup soup.  My dtr made me a lot of blended soups for the freezer, also progresso chicken noodle tastes good.  Last night I actually had some baked acorn squash stuffed with quinoa, swiss chard and dried cranberries...just had a little.  I am finding I feel sicker if I dont have something in my stomach.  I resisted taking the zofran - finally did on Saturday...have only taken three all together.

Ain't this fun?!?!??!?!?!

Hope everyone has a great day today!

kg1234

Artiecat, today is day 6 for me too!

I'm not nauseaus anymore ..but just came back from the hospital.  Was having trouble breathing...thought it was my asthma...but chest sounds clear.  It hurts to move, breathe -- might be an infection, but apprerently "i'm not there yet"...ie. no fever, so there is nothing they can do.  Wait, if it gets worse, come back.  Also recommended I take tylenol.

I wonder if it's bone pain from the neupogen....just happens to be in my chest.  Anyhow, I'm thankful that it's not serious so far, and that I'm not nauseaous anymore.

Now I just wish I could be comfortable.  

Ugh. Ain't this fun?!?!?!?!?!?!?!!!!

Kg.

profbee

Carla,  I'm so sorry about Spencer's diagnosis.  It sounds like he has awesome parents though--the kind that will give him every opportunity to succeed and see him through all this.  I wonder what Jack understands too--he'll be five in July too.  We just put a tv up in our bedroom, so I'm using it to watch movies with Jack in our bed.  My hubby teaches at night, so it's a nice special time for Jack and me to climb into bed with some popcorn and snuggle. I figured that I will increasingly be able to do less of the "fun" stuff, so it would be good to find some low key special stuff we could do together.  Right now, he's most freaked about my short hair, and he's totally disturbed that I'll go bald.  oy.  I just realized that you're in Poughkeepsie!  My hubby and I lived in Highland and met at SUNY New Paltz!  Ah, memories!  

I hope everyone's having a good day today.  It seems that this week is the first that things are starting to build up with me.  I've had heartburn something awful.  And, I have had a sore throat since the weekend.  Yeah, ain't this fun?!  That should be our motto!  LOL!   Today's my day off, so we're going to sneak around and get Jack's Easter baskets ready while he's at school.  I LOVE sneaking around when he's at school!     

pawprintgirl24

i told my husband last night that all i did was complain about something and i was tired of it!! i love to hear about getting in bed with the babies!! although mine is 18 she has climbed back in bed with me a night or to when her dad is at the station and we will watch tv like we did before she got her on life. we watch whatever she wants to so sixteen and preg was on last night .. but it is nice to just have her close and to hear about her day

i think i over did it yesterday so i think as soon as i can i am leaving early today ,just feel run down and i only have 6 pup dogs today so bed here i come!!aint this fun!!!

kg1234

Hey everyone,

Okay, so my chest pain/breathing sent my back to the hospital yesterday and 2 CT scans later (onc was afraid it might be a pulmonary embalism) and blood work done.

Blood work showed my neutrofils were 12.5 and my hemoglobin was 119.  She thought they were pretty high considering I've only had 3 doses of neupogen and I was day 6 post-chemo.  

So today, back to cancer clinic!

What a journey...honestly, the CT scan is now becoming my least favorite...

Saturday I'm having a head-shaving party, and my boys want to shave theirs too...interesting how children react so differently.  They say they are okay that I won't have hair...but let's see what happens when it's gone.

Anyhow, hope everyone has an okay day today!

Kg.

sarahlou1967

Kg1234 - I really feel for you I hate CT scans as well they suck big time!!! Sounds like it was a good move going back to hospital as they seemed to be worried about you and your pain/breathing difficulties, best wishes to you and good luck for your shaving party on saturday.

geocachelinda

My scalp felt sore today when I washed my hair.  Yesterday was day 6 for me too!  I am eating good again.  No more nausea.  5 days of "food envy" was enough!  Now I know if I can tough out 5 days I'm good to go!  My Dr. has prescribed Emend for my next round of chemo so I hope it helps!  I have a new pet bird.  She is sweet and a lemon yellow Cockatiel.  She will brighten up my dark days!  I am still sick with the cold from before surgery, so when I go for blood draw today I will talk to them about it.  I think it is a sinus infection.  I get those often. 

DeeBee

Well, I joined the group today.  First round of A/C - will have 4 in total - scheduled every 2 weeks and then 4 Taxol the same way.  I did fine and the place is very comfortable and the staff wonderful so now the only unknowns are what will be the side effects for me and how long they'll last each time.  Right now I have a pretty 'fuzzy' head but that started before I left and the nurse said it was the medicine so I am just going to give into it.  I'll have some lunch and then nap I guess. I have been lurking here and reading everything so I think I have every possible supply in the house that I could need.  So thanks for all the advice that's been posted here. 

artiecat

Well, went to doc today - wont let me go to work...apparently my white blood count is "the low of the low."  Disappointing, but now I know why I feel the way I do!  Have some mouth issue already.

Ain't this fun!?!?!?!??!?!

Cheers and good thoughts to all!  

Merilee

DEEBEE- Hi, sorry to hear you have to join but you have found a great support network.

Artiecat, enjoy staying home, do something you love

G- Linda, I can relate to the bird brightening your day. When I went through Chemo last year at the same time I was getting a divorce (are we having fun yet?) I went to the pound and got a chemo kitty

I named him Shaman and he was the best medicine I had.

Well it is one down and 3 to go for me, was given a shizter load of nausea meds both in my Iv and pills .  Hope it works.

KiwiMum

Hi everyone. Day 3 today for me. Spent the first night awake feeling quite sick but managed to get the meds to work after a few hours. Yesterday much the same. I'd feel fine for a while and then blah and nauseous for a while.

I'm not very interested in eating but am forcing myself to eat dry bland food here and there. I'm remember during my pregnancies I'd feel much more sick if I didn't eat. Also trying to get the two liters of water drunk each day is taking an effort.

I can relate to everyone here with young children. My girls think I have a cold and want to know why I have a bowl next to my bed. Everyday they are checking my hair and asking about the wig. I'm cutting my long hair short next Tuesday - 7 days post infusion. From what I've read here I'm guessing I may start shedding a week later.

I was thinking the other day that my passport is due for renewal soon. My options are to get the photo done now with long hair? Get it with my wig? Or get it short? As it's valid for 5 years its a bit of a dilemma.

Welcome DeeBee - much like Merilee I'm sorry you find yourself here. It's great to have these fab ladies to share our journeys with.

artiecat

Yeah, Merilee - would love to be here at home doing something I love - sitting at my loom and weaving - unfortunately I am so tired I can hardly put one foot in front of the other!

Tomorrow's a new day!

pawprintgirl24

i have had a bad day!!!! sorry...i just know that y'all know what i mean... we had dinner and i left the table. my husband thought i lost my dinner but it was i was crying ( which i never do) so he hugged me and then he starts!!!  NO!!! the big guy does not cry!!!! roller coster at my house of emotions..now i am tired because of the crying.it just reminded me of profbee's hug from her husband that they just held on tightly to each other like a life line.

all these se are so doable but it just got to me today. it could be so much worse like the few that have had trips to the hospital or can't go back to work... i should be greatful, just needed a minute to let go i guess. all these new emotions are hard to deal with on top of the se...o joy next week when the hair should go!!!!

 famous last words "ain't this fun" love it!!! 

determined3

hi guys,

how long should my port 'hurt'? how long should my neck hurt? it just feels weird.