Starting Chemo, November 2013 Group
Comments
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Lisa137, loved the story of your great aunt -- you are so lucky to have had such a great role model. I had a dear friend in the bad old 1990s who taught me a similar lesson, but more from the opposite side of things -- not to let the fear of the future rob me of the joys of the present. -
Northwinds, the wonderful part of this group of women is that we all understand where you are -- we've all been there, too. When you write about your bad day, you get unlimited sympathy/empathy, and we all feel better knowing we are not alone in our secret fears. (((Hugs))) -
Audra, you are beautiful. I would like to learn to tie a scarf like that. Ellen, I agree that was insensitive of him. Sheesh.
Saw my oncologist and he said that continuing chemo could kill me. He said that taxotere is known to cause bowel perforation and if I had positive nodes he would consider lowering my dosage but with negative nodes he thinks it is time to stop chemo. He said I will follow up with him every 3 months and referred me to a nutrition group. I am relieved to have that over with and will now deal with getting healthy in general and not focus on possible outcomes.
Still going to be watching and praying for those of you still dealing with the side effects and being impressed. xo -
UGH Ellen!!! Sounds like you handled it very nicely. A former co-worker of mine said to me when I told her about my double mastectomy "well, at least you get a boob job out of it!!!" I was gob smacked b/c like you this is my second go-round......I thought it was an extremely insensitive and rude comment. Some people have no clue...... -
Ellenkc, some folks are just tone deaf -- so glad you could change the subject, and hope the whole conversation fades from memory fast! Not sure I'd want him as a tenant, but maybe his wife really is a great gal. -
Just lurking...for the moment... -
Wrenn - thank goodness you are stopping! I'm glad you have such a sensible MO who is taking ALL of you into account. This means you'll be blazing new trails for all of us. I plan to go into a nutrition group once I've started Tamoxifen and it's the after treatment journey that has me a little overwhelmed. I've got significant BMI to lose to be the healthiest me and doing that post-chemopause is going to be a real challenge. That said, I'm a huge believer in the power of nutrition and also see it as an adventure.
Ellen - what a toad.
I'm cutting off my curls tonight while they look good for a change. Going to save them on duct tape and see if I can make my own halo. My teenage son asked me to wait until after he gets back from Scouts so he can say goodbye to them one last time. LOVE THAT BOY! My daughter is as fascinated, as I am. to see what buzzed mom will look like so I'll send her photos during the process. Should make for an interesting study hall on her end! In the end, I'm going to be sure to save each of them (and me) a curl or two tucked away for the future. Hoping that when my hair comes back, it's much thicker. Mine is so fine it's basically an optical illusion. I never thought I'd feel empowered by cutting my hair off but it feels like I'm winning a wrestling match with a personal hair demon instead of waiting for him to jump out and get me one of these days. I want to be the brave and bold woman that future generations feel they can look up to - something very good should come out of cancer and if I can help someone in my community all the better. -
Pat Alameda and everyone...thank you so much for your kind words and warm wishes. I do feel less alone since connecting with women on this website.
Paulette...the scarf is beautiful and so is the card!
Wrenn...WE ARE ON THE SAME HAIR STUBBLE LOSS SCHEDULE! I shaved my head in frustration the day before my first chemo but began shedding like an old Christmas Tree last Saturday...about 18 days out. I am already nearly bald on top with lots of patchy bald spots in the rear...this all happened in three days or so.
Well...just got in from the BGC and my 2nd chemotherapy T&C! So, I'm 33.33% of the way through my chemo! Took nearly 3.5 hours for the whole ordeal but everything went well. No allergic reaction to the Taxotere. Mouth felt metallic and weird for the first 5 minutes of the Taxotere infusion. Port area is sore...I never received instructions on how to use the Lidocaine cream, so it didn't work...icing helped a bit. Feeling tired and per last time, my mouth is feeling a bit raw and I'm getting some mild GI symptoms (nausea, gassiness, feeling like I'm gonna have diarrhea). Otherwise I'm okay.
Bulk of my awful symptoms started 48-72 hours after T&C last time, so we shall see,
Started the Claritin in prep for Neulasta tomorrow.
Just gonna rest in my recliner right now and watch Dr. Phil...it's a show on husbands who cheat with hookers & spend their lifetime savings on them...sigh.
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Audra...just saw your photo...you look beautiful!
Do you mind if I ask WHERE YOU PURCHASED YOUR TURBAN/SCARF?????
Did you buy it from the Turban Diva or Titillating Turbans????
I would LOVE one! I feel like I look awful right now
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tonilee- Can;t believe that no one instructed you on how to apply the EMLA cream!!! So here is a quick lesson.....
Apply the lidocaine cream about an hour before your scehduled infusion time which means apply it at home before you leave for the infusion center and an hour before the scheduled infusion time. .Apply the cream in a spiral circle about the size of a quarter on top of the port. You can use the move the cream around with the EMLA tube opening to spread it around if you need to. Then you can cover it either with a tagaderm covering or
If you receive a generic EMLA cream at the drug store, it may not come with any special coverings (tagaderm coverings) for the area to put on after you apply it. In order to avoid getting the EMLA cream on your clothes and other places, just a 4 X 4 inch square of Glad Press N Seal plastic wrap to cover the area. Make sure you avoid the temptation to spread the EMLA cream on the port area; I'm told that your fingers will be numb for quite a while!!!! You can buy tagaderm coverings at Walgreens or CVS (Nexcare brand--- 8 coverings for $10.00)
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(((Melrose)))...you are so sweet to everyone! I feel like you are my guardian angel! Yes, the chemo nurse who cared for me today...different from the one last week...told me how to properly apply it...similar instructions...a little rub, a big dollop and cover with Saran Wrap all about 1 hour before treatment.
Thank you, Melrose!!!! Please don't ever leave us!!!!! Keep reading and posting! I love all of it!
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Ellen-
What an idiot! Doesn't everyone and their brothers know it all about cancer?!!! REally!
Bluegrass- I agree the chemo always seem to make my surgery/hurt areas hurt or burn or tingle even...interesting and I know the 1st chemo I had, I had my expanders to implant exchange 2 weeks prior and that time my whole new implant area burned...this time just a little so that was 'fresher' ...made it worse..
Wallymama- I hope you did ok in Chemo chair today! Wishing you NO side effects!
Quirky- thanks for selfie help and my daughters have tried to, but I always screw it up or get too close I think or it's fuzzy cause I can't hold still...so I just take them in mirror -
Had my ultrasound today, radiologist said looks benign but wants to recheck in 1 month since my previous cancer ...98% sure it's nothing...then I talked to our friend, plastic surgeon and he said its the sutures and they will dissolve within 6 months don't worry...so I am trying to not worry but it seems once I'm on the train it's hard to get off....I am drained physically from being worried the last two days..
Went to counselor this am that I liked, so that will be helpful, she is going to address my anxiety and help deal with that is goal.
then went home, then to grocery store with my husband, first time since this started...It is a new store and he went to sign up for rewards card they had at this entry way with tons of people getting you to sign up...so I got fruits/vegies/ he was still there so I went further, then all of a sudden, I felt like crying...just lost and alone and afraid...it was awful...then he came a few minutes later and I just wanted to leave...
I think it must be hormones gone (as no period this time yet, and due 2 days ago) which is good as I wanted the estrogen/progesterone to stop since it grows my cancer ...but my emotions are just WEIRD and hard to gauge...
I feel so insecure, and normally that is NOT me! I have really gotten clingy and attached to him too...he has a great job he can work at home or not so he has been here a lot...and obviously I have gotten dependent on it...and him
Is anyone else having this happen?
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Oh Audra, (((hug))). I too have become scarily dependent on my husband. It makes me so in awe of women like Ellen who are going this alone. I'd cope I guess, just as I'm coping with whatever gifts chemo gives me each day, but damn, it'd be hard.
***************Caution RANT AHEAD*********************
I was buying some over-the-counter supplies at CVS. I overheard the clerk speaking to a customer ahead of me, and could tell that he had a cold. When it was my turn I politely inquired if there was some other way to ring up my items without his touching them. I explained that I was doing chemo and that it sounded like he had a cold and that I couldn't catch it. I twisted myself up in knots to explain myself because, deep breath, he was African-American and I am white and I didn't want him to get the idea that I was some out-of-control racist who objected to his touching my things. He nicely used the hand-held scanner and I bagged the things myself. I paid with my card at the self-operated machine thing. Then...as I was leaving he wiped his nose with his hand, so my paranoia was not misplaced.
Jump to two days later, I'm at Safeway buying some groceries. The checker is touching FOOD products. In between ringing up my items she wipes her nose with her finger, and YES she sounded sick too. UGH!!! I get that clerks probably don't have enough sick leave to take off whenever they've got a bug, but....would it be unreasonable to expect that they wear masks when sick? Are we supposed to have to Clorox wipe down everything we buy in a store? There are people with HIV and other illnesses that leave them permanently immune suppressed, I'm just a short-termer. In Japan people DO wear masks if they're sick and go out in public. Nobody who isn't a recent Asian immigrant does here, but why not?
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PatAlameda-
HUgs to you too! Good, I thought I was becoming one of those 'clingy' women...:) My husband is just a doll, and he is upset when I'm upset -OK when I'm OK-and maybe too in tune with me...
I am a GERMAPHOBE, even when not on chemo....I was getting worried in that grocery store today too, besides getting looked at because I had my turban scarf on, there were TONS of people at their deli and it's a NEW store...
I CANNOT stand slurpy, cold noises! And SO many people aren't very clean....thinking airplanes here...even on first class I get the VERY first row so I don't have to be by people and their sneezing and coughing!!!
Maybe you should get a mask and wear it...??? They had them at hospital today when I got my ultrasound...just sitting by desk and hand sanitizer, I LOVED it...:)
I am feeling good, if it weren't from my anxiety filled last two days, I think I would be better,
how are you feeling my same day chemo sister?
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Pat, the good thing is you knew these people were sick! It's the ones we don't see wipe their noses that I'm afraid of.
Audra, you look fantastic,
Wrenn, congratulations on finishing chemo!
I haven't gotten my period since I started chemo. Mo complains about that. I also have the soreness on my scars,
Appointment with physical therapist on Friday.
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smlvr-
thanks you are soo nice! I need to go to Physical therapist or occupational I guess for my axillary node arm...they only took 4 and it is stiffer and feels tighter than other side for sure...Good luck there!!!
Wrenn- YES! That must be TERRIFIC!!!! But you have to stay on our friends group forever!
Ellen- you are remarkable and courageous and we all do admire you!!!
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it is nice to know side effects are done but scary to think i have only done one of 4 recommended treatments. I will try to focus on being one of the lucky ones. I wish i could have done 4 treatments when i see that you soldiers have fought through it but it is what it is and i will adapt. Thanks for the good wishes.
Hugs to those struggling.
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wrenn - I am glad that you and the MO are in agreement about your treatment.
audra - I hope the counselor will be better than any anxiety medication. I think the worry might be our constant companion, especially when our treatments end and we do not see the doctors as often. It's good to find ways to cope with it now.
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Ellen, I'm sorry you had that experience with that knucklehead.
Audra, you look beeeeutiful!
Wrenn, I'm glad you got some good, reasonable medical advice and can move to the next phase.
Quirky, how'd it go?
Tonilee, I'm glad you're with us.
Heck, I'm glad we're all together! Except for Aunt Flo...she can leave the party.
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Admission: I haven't checked my breasts at all since surgery. With all the interior weird goings on of breast reduction, and stitches releasing, I figure everything is just wonky now.
Cutting off my curls was a blast. When it was half gone I realized I look like the lead singer from The Human League so I put that on and enjoyed the process even more. Loving the freedom of super short hair. Here's my box full of curls I can mess around with later on.
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Holy LOL, Quirky! You had me at "Human League"...I about peed the bed.
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What beautiful hair Quirky. I hope it comes back in the same way. I'm glad you kept it.
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My temperature is hovering right on the edge of the "call the doctor" zone tonight. Actually went up to 101.5 earlier, BUT it's come back down again, and I'm pretty sure the reason it went up that high was because I got cold and wound up in bed, under a blanket, wearing a hoodie and a toboggan plus two pairs of socks, sweat pants, and snuggled up to hubby and two dogs, I'm surprised I didn't spontaneously combust. It wasn't like "shaking chills," I've had those, I was just COLD and could not get warmed up for a while. Had a low grade fever all day anyway....
Anyway, it's come back down the acceptable-for-tonight range, for now at least, and tomorrow I'm gonna let my onc know that we have a definite pattern here: I did the SAME THING last chemo cycle, and on the same day in the cycle. Mouth got sore, spiked a fever, never had any other real "symptoms" and was fine by the middle of the next day. The only differences THIS time is that #1. I'm sort of on my period, in that I'm spotting but not really flowing, and gettng a fever when I start my period is fairly normal for me, and #2. the fever went up higher this time, but I do think that being actually THAT HOT probably had a lot to do with it.
We shall see, I guess. I hope I'm right. I don't want any complications.
Audra, I am exactly the same way by my husband; he's literally my rock right now and I cling to him hard, especially when we go out for any reason. He seems to understand though. We, too, are very much in tune with one another and honestly I don't think I've really been out of the house without him since my surgery (wow!) Once this chemo thing is over though, I'll have to dust myself off and drive myself to radiation every week day for 6 weeks, so I reckon I better get over that...
re EMLA cream on ports; Last week when we were heading to my second chemo treatment we got about 30 minutes away from the cancer center and realized we had FORGOTTEN to apply the cream. We had planned to stop at Bojangles for a biscuit on our way anyway, so when we got to the drive thru window, we asked if they could give us a small square of plastic wrap, and if they didn't have that, maybe some waxed paper. Soooo I showed up for chemo with my port covered by one of the squares of paper that Bojangles wraps their biscuits in. It worked, and the nurses thought it was *hilarious,*
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hi everyone: Lisa, I just have to watch what I eat - no spicy or acidity. Today I took my sister out for lunch. Guess what I accidentally order spicy chicken. Wow! did I pay for it. I end up watching my sister eat it. I can still taste food, when I drink juice I have to diluted with water. I kept my hair as long as I can, now I'm going to have it cut one inch all over. My port is still in place. I felt it. Oh I pray its in place, I hate the thought of getting it replaced or redone after what I went through. Last night I didn't sleep much, overworked mind.
Paulette23: me too I couldn't sleep. Hugs. I feel like I screaming. Instead I went for a long walk. I got fresh air. Physically I'm ok. Your chemo is one day before me. What a Christmas present to have chemo on Christmas Eve. I am determine to go to Christmas Eve service at 11. After that I'm going to chemo land and sleep till I feel better.
Wallymama hugs I didn't sleep much either. My port is quite sensitive and I feel it, it's still in place. Hope you heal nicely on your new port. On the positive side I was sewing fixing or shortening our snow pants. Wow! that's an accomplishment. I also went for a drive tonight. I'm subconsciously thinking of my next chemo. I need to switch that off.
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sorry but I'm fallen asleep can't post anymore
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One day out and I guess I don't feel too awful. The APRN slowed the Cytoxan down to 45 minutes and the fuzzy head isn't too bad. Still got a headache though, so I'm going to get them to replace the Ativan with something else next time. A little queasy but the meds seem to be handling it ok. Sleepy. It's only 9:30 and I've had 2 naps since 5:00.
Phebe, don't worry about the port unless it actually can move around A LOT. Being a little sore after using that arm is a normal reaction to exercising it.
Everyone else, have a good day. Time for another nap.
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I don't recall who posted about the awesome power of slushies, but thank you! This may turn my hydration issues around and they are great on my sore throat.
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Wallymama-
my taxotere and Cytoxan are each ran over 1 hour apiece...why are they going so fast..??? maybe that's why headache...
I hope you continue to feel better .
Ellen- You have got to do what you've got to do and I'm sure even one round of this toxic drug will kill a lot! If not everything, I'm sure the 4 doses is way overkill...it sure feels like it anyway...:)
Lisa137- Good to hear I'm not the only one leaning on my husband...he is a rock, and I'm leaning on God too...but I am so thankful to have such a great husband and he is here with me quite a lot...
Inks- counselor was great not sure if better than the meds
But hoping soon it will be, I am seeing her again tomorrow - twice per week...I would go daily if I could, it was nice to talk about being anxious without someone telling me not to be...etc...she is doing a hypnosis of sorts/meditation thing tomorrow I can use when get super anxious...BRING IT ON!!! Quirky- Glad you cut your hair and that reference was super funny, love the photo ATLBRAVES...!
Wishing everyone a happy stress free anxiety free day!
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Round three today. One more AC and then on to Taxol. Wearing my new Buck Cancer hoodie that my hubby bought me.
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Northwinds...love your photo...you are so pretty and I like the hoodie a lot! You look great Prayers for a positive infusion day!
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