Anyone.Starting Chemo in October 2016?

Mothersip

connie1230. I've saved tons of headscarf ties on my Pinterest account. Search Karen DeQuasie! Happy tying! (It takes practice!

Al12

Hello weekend!!! I woke up this morning with a beautiful light shining through my bedroom window and I felt 100% normal and for a moment thought this was all a bad dream. It's so nice to know I don't have to go to work today.

Julianne, The sound meditation concert was amazing!!! it was in a very intimate setting in a tibet center in the city. You were able to sit or lay down and meditate and the sound really took you away to a different world. there was even a lady who played the harp and sang as swell. I'll try and load a few pictures of what it looked like. mindfulness stress reduction class sounds amazing. Is this offered in your yoga studio? I have been meaning to take yoga classes again but I'm really into hot yoga and I'm not sure if I'm able to do that now. I will ask my MO. In the meantime I found some good yoga youtube videos I want to check out. Starting a home practice can be really good too which I have been meaning to start for the longest time. I would love to hear about your meditation class when you do it. Oh and yes the food is overwhelming and it's just another thing on the list to do to maintain our treatment. I used to love my everything bagel toasted with butter and jelly.

VLH , So glad Nuelasta did not give you any problems.

Connie1230, Funny I too was thinking can I just shave off my hair and get it over with. I purchased my scarves from Charlie it's an accessory store with some apparel. They have a huge scarf collection. I also bought a few scarves from urban outfitters. All these stores are by my job. But amazon is good too I bought a few from them too. I even got my self a nice pair of new prescription glasses to go with wearing scarves. My other pair is too masculine looking. I think I'm spending more money on my new look lol. Regarding pintrest I just typed head scarfs turban and it's endless with info and beautiful pictures. Theres also Etsy you can check out.

Hope everyone has a lovely weekend.

Charlene1

VLH - yes yhe neropathy started with the first infusion of taxol it is mild and only annoys me at night or if I have been sitting for a while

when I get up and walk it goes away until I am idle again.

Abra - the neropathy just feels like my toes are numb, it comes and goes but mostly when I am just sitting or laying down when I stand up or walk it goes away for awhile, I also find soaking in a hot tub helps as well and I have been rubbing oil and lotion and doing a bit of a foot massage which also helps.

Had my second infusion Thursday of Taxol. The steriods keep me going at hyper speed until about mid afternoon on Saturday then I hit the wall and the flu like symptoms kick in for most of Sunday and Monday I feel a little hung-over. My hair is still holding on haven't even lost one strand yet, I am amazed at how good I feel (must be the steriods) really the only bad day seems to be Day 4 and it is not that bad I have not had to take any of my anti nausea drugs. This Chemo experience is certainly much easier than my last from this time last year, I was on cisplastin and it was horrible I was hospitalized and vomited 6 times a day even with the 24/7 of anti nausea drugs flowing through the IV, so so far with Taxol it is a walk in the park compared to my past Chemo experience. I hope the SE do not get any worse as these ones I have now are quite manageable. The worst is the constipation and I highly recomend stool softners I am going to start them the day of infusiion this week and see if I can head that off before it becomes a problem.

Hope everyone is doing well

Al12

Connie1230, I found this on line www.wrapunzel.com I already purchased some.

Mothersip

Love Wrapunzel!

VLH

Geneskirt, not sinus, but my lips feel a little chapped. I used to deal with that when I lived in the Midwest, but not for years. Maybe my routine is just so disrupted that I'm not applying my trusty Burt's Bees lip balm as regularly as usual. Huh? Autocorrect tried to change usual to ubersexual. Clearly, my Kindle Fire doesn't know me at all despite our many hours together.

Still mostly doing well. I met my friend for lunch and, even though I didn't overeat and brought home over half my meal, I suddenly got hit by waves of nausea so bad that I thought I was going to have to pull over. I stayed in the slow lane all the way home, but, luckily, the yucky feeling passed without me having to stop.

Do those of you getting AC every other week go in for labs during the In-between week? I thought I was going to have a week free of medical appointments for the first time since May, but no such luck. I don't know if that will always be the case or if it's just the first infusion? The nurse asked me about preferred times and gave me an appointment card as I was leaving and I didn't notice the timing until I went to update my calendar.

One last question: I'm surprised at how much my "PowerPort" protrudes from my chest. The images on the Internet make it seem fairly flat and discreet. My oncology nurse gave me a seatbelt cushion courtesy of Neulasta, which helps some, but even a soft sports bra strap grabs the bump and it hurts despite the incision healing up nicely. Monday will be two weeks post-surgery. Am I just impatient? My insurance company and I are spending a bazillion dollars on Neulasta, but, hey, I got a $3 cushion.

Lyn

Connie1230

it doesn't appear that I go in for labs every week. All of my appts are on the Mayo portal and interpreting the abbreviations are sometimes challenging. I do go in this week but so far it appears that the off week between treatments 2 & 3 and 3 & 4 are free. They have been known to add in appts and then notify me so that's not etched in gold.

My power port protrudes too. I actually tried to get them to move it over or down or somehow differently before they installed it. I live in FL and it's located in a spot that is visible with most of my tops. It doesn't bother me physically but does make me feel like a freak. I don't wear low tops but it shows with even a slightly scoop neck top

Sorry you got hit with the nausea VLH. I stopped the nausea pills and really worried about it today. My husband fixed spaghetti for dinner and I was afraid that would do me in but it didn't although it did slightly bother me. What did about do me in was the smell of his aftershave so that one I see going away for the duration.

VLH

Thanks for the response, Charlene. I'm glad the neuropathy responds to movement and that your SEs have been minimal.

I wonder why our surgeons chose PowerPorts, Connie? Cosmetics aside, I don't see how having something poking out that's constantly irritated by daily activities, like wearing a bra or seatbelt is a good thing. I know they can't relocate our veins, but dang! Maybe it will recede with time? I hope I'll get some weeks off as you did.

Re: scents, Amazon dropped a package off and I could smell the driver's aftershave when I opened the door, even though he was already in the van. I'm glad my chemo class asked people not to wear strong fragrances to infusions. Have you ever had a food server where you could "taste" their cologne? Ugh!

Al12, how great to feel normal!

I noticed that the UK's cancer prediction tool has been updated. It says I only derive a 6% benefit from Chemo in terms of 5 year overall survival. Given the risks, side effects, missed work, cost, etc., I hope it's more than that.

Lyn

Abracadabra

Oh Lyn, what a shame to have the nausea after a nice lunch out. Hope you are rid of it ... I just assumed that once the worst of the queasies had passed, we'd be clear of it until the next round of chemo. At least you have a lovely new cushion to take your mind off your troubles!!

Connie - your comment about your husband's aftershave reminded me of the one problem I had with smells during the week after chemo. Nothing bothered me except the smell of my own deodorant (baby powder scent). I was putting in on one morning and got really nauseated and dizzy from the smell. I showered right away and found an unscented deodorant, but even after putting it on I kept thinking I could smell that darned baby powder smell ... for almost a week. I think I now have an aversion to that smell for life!

I saw Al12 and Mothersip's references to Wrapunzel, and after checking it out, I was inspired. They have some great tutorials about tying headscarves (I had no idea that people wear stuffing under their headwraps to create a look of fullness. The things you learn on the Internet!). Since I already have many scarves, I spent part of the afternoon practicing (both stuffed and unstuffed ... I knew I had gone overboard when my son said I looked like Nefertiti!). My husband and son both generally approved with the outcome, and so I'm feeling more confident about having it as an option when the hair goes. I also have an appointment at the Cancer Society office on Tuesday and hope to find a wig there. One way or another, I've got it covered. (That one was for you, Miles!)

Have a lovely evening and a restful night.

Miles

Hello Everyone. I hope that each of you found something to be grateful for and something that made you smile today. I have learned that there is always... aLwAyS... Something to be grateful for. We just have to look for it. Sometimes we are blind to it.

Abracadabra: I think you are super funny and I love puns so share away! laughing has to be good for us all! I'm glad you have a friend to exercise and talk to. Talking through it makes it go by faster. I love Pringles and now I want some... What is your favorite flavor? It's a good thing I don't have any chips in the house. I have heard that you loose the hair in your nose and it makes it run. Is that what is causing your nose issues?

geneskirt: I hope that you you find that one of the suggestions work for you. It sounds uncomfortable.

I hope everyone can see some good in your life. It certainly helps make the whole Chemo thing easier. We all have bad days and that is more than okay. If you are having bad days everyday; you may want to think about an antidepressant. When I found out I had cancer there was a part of me that wanted to be reunited with my husband who passed in 2012; the other part wanted to take care of myself and continue to live. My problem was the will to live was a small percentage. It scared me enough that I ended up getting some help. Now I can see that the good in my life is worth living for. I hope that each of you can see good in your lives: but if you don't... it is okay to get help.

((hugs))

"If you change the way you look at things, the things you look at change." -Wayne Dyer

b2alicia

AI12, that sound meditation sounds like it was wonderful. I would love to find something like that too.

Speaking of Power Ports... Mine was put in yesterday by my wonderful nifty surgeon... at 5 pm on a Friday night, no less. Everything went fine. I was expecting to come home around 7:30 when my friend Lindsey would pick me up.

But in recovery, even after sitting up in a chair, my nurse looked over and said, "Betty, your pO2 is 63! (Instead of 90) You can't go home tonight." So my poor friend Lindsey...she ended up coming over to my house, picking up my 2 dogs, Percy and Dillon, shown above, and my CPAP machine, dropping off my machine back at the hospital, and taking the Boys back up to her house 60 minutes away up into the mountains, and letting them sleep on her bed with her, her husband , and her other 2 Springer Spaniels.

VLH

I'm glad you got the help you needed, Miles. :-)

Lyn

Abracadabra

Miles - I am so sorry to hear of the struggles you have had. Depression is so difficult ... it changes the way we see the world, and it can be very difficult to make good decisions when that happens. I'm glad you were able to find help. I've also wrestled with depression over the years, and manage it quite effectively with meds, a healthy lifestyle (lots of exercise and rest), a positive outlook, and connecting to people. And humour, of course.

When I was writing my earlier post this evening, my husband glanced over and asked why I was smiling. I recapped my tooth story and pun (yes, that was another one), and told him that you liked it, and so I was having fun writing another (bad) pun for you in my latest post. He commented that I was lucky to have a group to connect to, and he's absolutely right. In this group, we form connections to each other which enrich our own lives, as we both give and receive support. We are fortunate indeed.

On the topic of Pringles, I'm a spicy gal, so I'd have to go with Spicy Guacamole, Buffalo Ranch and, of course, Jalapeno. How about you?

On the topic of my nose hair (never thought I'd start a sentence with THOSE words), I considered that possibility. It just seems really weird that my nose hair would be the first to succumb to chemo, since I haven't lost hair anywhere else yet ... as if the nose hair was jumping in ahead of its turn. Although, maybe it's like that old joke "If your feet smell and your nose runs, you're built upside-down!". Maybe I'm built upside down ...

I am giving you a big hug ((((Miles)))). Have a good night.

b2alicia

Oh Miles, you are very wise for someone so young! Finding gratitude in our hearts, even for small things, has helped more often than I can say.

I would love to give you a great big hug.

geneskirt

Miles, I love this... "If you change the way you look at things, the things you look at change." -Wayne Dyer

On that note, does anyone have a suggestion for some inspirational reading?

x

geneskirt

UPDATE: Saline Nasal Spray (or saline/soda) works instantly for relief from dry, sore upper sinuses and nasal passage -Walmart. *Drug free

geneskirt

FYI: Read on a different BC.org thread that this was recommended by another onc for sore, dry (bleeding) nasal passages so I tried it. Feels (and smells) better than polysporin or vaseline! Relief! $7

VLH

In my defense, my potato chips are organic; therefore, they're healthy. That's my story and I'm gonna stick to it!

Lyn

JR74

Hello! I finally pulled myself out of the funk I was in. This chemo thing turned out to be so much more than I was giving it credit for! It took me a full week to feel remotely decent. I saw my MO Thursday she wasn't happy that I'd lost 13lbs in a week.. even though I told her I could wear my mothers ring again and also a pair of pants I haven't worn in over a year! She just didn't appreciate my humor. She will adjust my dosage for next time by 20% meaning I'll get 80% of the initial dose. Hoping that will cut down on my extreme side effects. My WBCs were low, no real surprise there. So she prescribe an antibiotic to try to prevent any possible infection. So far so good! She says if it happens next time I will get the dreaded shot 😖.

geneskirt- I've had the dry nose too, I've had a couple of minor nosebleeds as well. But nothing serious. It's more irritating than anything.

I accompanied my daughter to her OB appointment a couple of days ago where we discovered that the baby has dropped! She is almost 35 weeks. So since I've been on the couch a lot I was able to finish a project for my new granddaughter miss Charlotte Davis (Davis after my great grandmother and also my youngest daughter's middle name❤️) I made a dream catcher to hang on her hospital room door and then in the nursery when she goes home. I just have to add her name, birthdate, and weight when she is born. What do you guys think? I'm pretty proud of it!

JR74

Also forgot to mention, on day 9 and still no hair loss YET

Abracadabra

JR74 - I'm so glad that you're finally feeling better ... what a rough time you've had (13 lbs is a lot to lose so quickly). I felt miserable for a full week, and then it lifted quite dramatically on the 7th day, and since then I've been feeling terrific. You just never know. I'm dreading my next chemo though ... my nurse told me they will change my anti-nausea meds to try to help, so I'm hoping that will be enough.

Your dreamcatcher is beautiful ... what a lovely idea. When my son was young, he used to have nightmares, and so we put a dreamcatcher in his window and he felt better.

Good luck with your new chemo brew ... hope it does the trick.

Abracadabra

Geneskirt - good work finding solutions to the nose problem, and thanks for posting the images. I'm sure many of us will eventually have similar issues, and it's so much easier when someone else has already tracked something down. Posting the image is brilliant ... I'm visual, and it's way easier to remember something once I've seen what it looks like. So, again, thanks.

Lyn - on the topic of potato chips, I feel that a balanced diet includes a variety of healthy foods on a regular basis, and then goodies (chips, ice cream, cheese cake, milk chocolate, fresh tender croissants, those Tim Horton's cookies with white chocolate and macadamia nuts, mmmm ......) once in a while. Since we all have such iron-clad self control, it's obviously not a problem, right? Right! Yeah, right!!!!

VLH

JR74, what a lovely Dreamcatcher. You must be getting so excited! Although I would love to lose 13 pounds , that's definitely not the way to do it. 😕

Barb, all joking aside, I lost 100 pounds and have kept it off since I abandoned dieting. I'd heard the concept before and it seems silly, but I just developed a "bite me" attitude toward people judging what I eat. if you don't feel guilty every time you eat something perceived as unhealthy , it gets rid of the shame that increases stress, making you want to eat more. I still take commonsense actions, like having salad dressings on the side and dipping my fork in them, individual containers of ice cream, the dentally dangerous 100 calorie popcorn bags, never eating my Kettle brand organic chips straight from the bag, taking a little cooler for leftovers when I eat out so I don't eat too much so it's not "wasted," etc. With the blasted undiagnosed herniated disc that crippled me for six months, my weight loss stopped. I didn't gain significant weight despite barely being able to walk or stand and I see that as a win. 😀

Lyn

Julesbabe55

Good Morning Ladies:

It's a little cloudiy here today
so making the most of it by cleaning! Whoopie!! Getting my nails done yesterday was
so nice - I felt "girly" again - does that make sense? It was the best
medicine. I’ll admit I’ve started to feel down anticipating the hair loss that’s
to come - trying to do whatever I can to keep my mind off of it. Going to check out wrapunzel that you all have mentioned. Going on Tuesday with my SIL to by some hats and I'll probably go the lazy route and get some pre-tied scarves as well. Hope they have a good selection.

Connie1230 - I found the SImilasin in CVS - silly me, I was looking in the wrong place. No wonder the pharmacist looked at me like I had 3 heads when I asked where it was.

Barb - love that you are continuing going to the gym. I haven't started to go back yet but I do want to if only to keep up with doing the weight machines as I was before. I'm going to ask my nurses this week - I'm sure they'll say ok as long as it's not low WBC week. I haven't had any issues with smell as yet - maybe it will kick in with then 2nd treatment. Love your upside down comment - best ever!

AI12 - the mindfulness class isn't through my yoga studio - I joined through this cancer support center I go to in Delaware. It's 8 weeks total with an all day retreat sometime in November. You get "homework" each week so you are practicing almost every day. Homework for the 1st two weeks was doing a 45 minute body scan each day which is basically tuning into different sections of your body and concentrating on your breathing. We're now up to daily 15 minute quiet times to concentrate on breathing and alternating between the body scan and some basic yoga. My challenge is putting other things aside to do this - I find that the best time is the afternoon - I was doing the body scan at night & falling asleep! But I try every day & that is all that we can do.

Lyn - yes - I do go for bloodwork in the weeks between treatment. I'm on a 3 week cycle so I have lab scheduled for the 2 weeks in between - at least for this first go round. Not sure if that will change after the 2nd treatment though I seem to remember my onc saying she likes to do that even though others don't. As to my port, it sticks up as well. My sister - who's a nurse - said it's to be expected since they supposedly put it up against a bone near the vein - she was pleased with how it looked. I also have a challenge with the seatbelt - going to see if I can get me a $3 pillow out of the deal

JR74 - the dreamcatcher is beautiful. Congratulations on your granddaughter whenever she gets here!

So ladies - here's a serious question - have you had the feeling that you want to have one day - or maybe more - when you don't want to talk about all this? My husband and I are having a serious disagreement since I don't usually call people back right away when they call to see how I am doing. I know they mean well, are concerned, being supportive and all love me but there are days when I don't want to talk about treatment, how I'm feeling, what I'm doing or the next treatment. Is it so wrong for me to want to wait a few days - or maybe more than a few - to call someone back? I do eventually call and enjoy the conversations when I do - it just takes me time to get there. Am I being selfish, self-centered and plain old acting like a spoiled brat? What do you think - any & all opinions welcome.

Julianne 

Abracadabra

Wow Lyn - what an incredible achievement to lose that amount of weight! I completely agree with your attitude ... eating is a necessity and a pleasure, but only one aspect of our lives. Putting undue emphasis on it only distorts things and creates additional problems (i.e. shame and guilt).

I eat reasonably most of the time and indulge occasionally (without apology). I find that mindfulness is so important ... when it comes to food, I try to think about how each item is adding nutrition and taste to my meal as I prepare it, and try to eat slowly, to taste the food on my tongue. I like something sweet after dinner, but often it will be one or two dates, or a small square of chocolate.

As we come to know our own bodies, we find the best ways to move forward. To have lost all of that weight, and to maintain the loss despite your disc pain, really illustrates that you have found whatever works for you.

That's one thing I've enjoyed about getting older (I'm 55) ... I feel so much more accepting of myself than I did when I was younger. It's very liberating to not give a damn about many things that used to sap a lot of mental energy. Cancer also has a way of focusing the mind ...

It's a gray day here, and the rain is pounding down. My dog Max keeps glaring at me so I guess it's time for a walk. Have a nice day.

Abracadabra

Hey Julianne, Your question resonates with me. I often feel the same way. I don't think that there's anything wrong with waiting a few days to call back (my friends know that I call back eventually), but it depends on the caller.

If I feel I need to call back right away, I'll open the call by saying that I appreciate the call, that I'm doing ok (or whatever minimal amount of detail you can get away with), and then I'll shift the conversation immediately with something like "So that's where I'm at. What are YOU doing these days?" I'll cleverly follow up with a few more guiding questions if there are lulls (like How's work? How are the kids/dog/cat/grandchildren/recent surgery/classes etc?) Then I close it off with "It's been so nice to talk to you. I'll be sure to call you when I have something new to report." or something like that. I find many people are very happy to talk about themselves and their interests.

Or, sometimes I'll text back, telling the person that I'm doing ok but just not up to phone calls these days, and that I'll be in touch to talk as soon as I feel up to it.

Or, if it's a relative, I'll get my husband to run interference ... he can call them and give an little update and let them know that I'll call when I'm up to it.

I think most people are very understanding, and reach out to let you know that they care and are thinking of you. They just want to know that you're ok ... so it's ok to be creative in how you approach it.

VLH

B2alicia, sorry about the delay getting home post-surgery, but glad you got the port implanted.

Ohmigosh, I glanced back and realized that autocorrect had changed SEs to SEx. Although some of its revisions are amusing, I really wish I could turn it OFF (no pun intended). 😨

Lyn

Abracadabra

Betty - how is the new port feeling? I don't have one (my doctor thinks my veins will be ok) but I have a feeling that I'll wind up with one along the way. Sure seems more convenient, once it's in and healed.

Percy and Dillon must have been happy to have their momma back home. They are gorgeous and certainly look like they're living the good life, curled up on a blanket on a sofa! When my husband agreed to our kids' incessant requests for a dog, he insisted that the dog not be allowed upstairs in the bedrooms, or on the furniture. Max (a medium-sized mix of German Shepherd, Labrador and Husky) was 4 years old when we adopted him, and quickly learned the rules. So well, in fact, that one time when my son was home sick from school and I relented and told him that the dog could sit with him on the couch, he could NOT get that dog to get up onto the couch. He finally picked the dog up and put him on the couch, preparing to cuddle, and Max whined and shook until we let him climb back down. We all agreed ... Max is a floor dog! He's 14 now, and very gray, blind in one eye and almost completely deaf, but he's still a very beloved member of our family.

Hope you and your dogs have a nice day.

lidabit

Hello all:

preparing to start on Wednesday. My chemo teacher recommended a light lunch to bring to chemo. Any suggestions? Also any recommendations for food items to have in stock at home?

Thanks

E

b2alicia

VLH, thanks, I'm glad it's in now too! Though it's sorta driving me nuts today...itchy, sore, etc. ( LOL SEx)

Abracadabra, oh my...Percy and Dillon have always slept ON the bed. They each have their own blankie, on top of the bedspread and those get washed on the same day as they go to the groomers. And since they're poodles, they don't shed much. That's my story and I think I'm gonna stick to it.

Julesbabe, I think whatever feels right to you regarding when you return phone calls will be just fine. Maybe you could write up one generic reply, and your hubby could make the call-backs. "Julianne was so happy to hear from you and will return your call when....etc." Hugs!