Starting Chemo March 2015

eheinrich

ohhhh, this is not good news Jackiebird. I am bipolar II but haven't had a hypomanic episode since 2005. While they can be fun, the following depression is so scary....

shaz101

Katy... I hereby ban you from internet shopping! Sent with much love. I can understand your worry about the drugs! Damned if you do damned if you don't. My BS told me that I might not need chemo, but I was scared that if I didn't have chemo the cancer would come back. I was relieved when the oncologist said that I needed chemo but at the same time disappointed that I had to have chemo. Its for people with cancer...not me! 

Greenae, you look beautiful. Everything about chemo scares the hell out of me, I can't seem to pick a reason and I've given up trying to analyze it. Just try to enjoy now. Right now is wonderful. Sending you some hugs x

greenae

thank you for the Hugs, Shaz!

Yes, I need to stop wasting energy worrying. I am just not enjoying this rollercoaster. But since today was down, I am hoping tomorrow will be Up!

Hugs!

Arlene

LisaZak

Im checking in with an update. (Can you say steroids? And sleep schedule?). My first "spa day" was Thursday. 6 1/2 hours. DH and Baby boy were with me. It wasn't as bad as I imagined it would be. Felt a little light headed from the benadryl/steroid combo, but other than that it was pretty uneventful. The infusion room was not really what I expected. Very open and 6 chairs on my side. Not much privacy. It was also very busy and I get overwhelmed and anxious in crowds. Its not that I am anti social, I just have a pretty large personal boundary until I get to know people. I told my DH that I felt like I was in an airplane terminal waiting to board a plane!! It was a long I felt pretty good when I got home and managed to get a mile walk in when I got home. No nausea yet. Today was OK. Had a stuffy nose, but its allergy season starting. I tried to deal with bills and got into a huge fight with my FSA account. Tried to use my card and it denied. Long story, but when I finally got hold of them to find out what the problem was I found out that payments that they had accepted back in January were denied because the service date was 12/26! Said I had to repay $1300 before they would unsuspended my card. After a shouting match and a xanax and me breaking down bawling on the phone (I told the woman I was going through cancer and chemo and I really should not have to be dealing with this added stress). I think we figured it out. I managed to take another mile walk and that made me feel better. Fell asleep on the couch watching a movie (probabaly around 7:30. Now wide awake at 2:00! Darn steroids! (JackBirdie I haven't had the urge to shop though!) Thankful for minimal SE's at this point. My blood work was good yesterday, so no Neulasta shot needed. Sorry about the long post. Hope this finds everyone as well as can be.

Jackbirdie

Lol Lisa!! I'm awake too! But our fearless leader Shaz banned me tonight from late night Internet shopping. I got a new bed today (pre-ban purchase and not 4am Internet anyway) and I'm thinking im going to sleep well tonight.

I'm sending very special thoughts and hugs tonight that your SEs stay minimal and you get to sleep soon and under budget!

shaz101

Just remember. I'm in Australia, so I can keep an eye out for you insomniacs! 

PrincessOfMeh

LOL, the shopping is cracking me up! i went through my spree before chemo started, during diagnosis and staging. I'm 70% through an aromatherapy class for NAHA Level II certification and whenever I knew a test result would come in, I'd arrange to have aromatherapy goodies delivered that same day so I'd have something to look forward to. Needless to say, some essential oils are extremely pricey. Since then, though, the only thing I've picked up that wasn't a SE alleviator is a Kindle Fire and truly, I haven't even ordered that yet, just picked which model I want. Only reason I'm doing that is because I managed to ding the screen of my Paperwhite. It hasn't splintered yet, still readable, but I know total destruction is coming. I just loathe ordering a replacement because I know from bitter experience that loading a new machine with the 1000s of books in my library and sorting them into proper collections will take 3 days solid, minimum. Gak.

Anyhoo, those of you who are newly starting...If it helps at all, please remember that it might not be that bad! Yes, it could be terrible, very, but you could also win the mega-woot chemo lotto of minimal SEs. Prepare/brace for the worst, but never stop hoping for the best. So far, I've been lucky. You could be lucky too!

kachincolor

Good Morning March Chemo Chicks! Thank you so much for all of the lively and illuminating posts! I am starting into my third week after my first round and am starting to feel a bit more normal. Unfortunately, just as the horrible bone/muscle pain subsides and I can finally taste something to eat I am now experiencing THE WORST insomnia. I just can't sleep. I walk 3-4 miles every day. Have great "sleep hygiene" and have tried Melatonin, and Ambien XL. Until yesterday, when my MO instructed me to take 12mgs of Ambien I was only sleeping about 3 hours. Can't nap. Feel like my brain is on speed even though I don't use caffeine. Its just crazy! Meeting with my Acupuncturist on Monday and am hoping so has some idea.

So-She-Did thank you for sharing that you lived in my territory once upon a time. I love the area. Where are you now? I know some women don't have a lot of problems with side effects; but, I certainly did. I thought I would be back working after day 4 or 5 but I could hardly move (except for my daily walk) until about day 9.

Migranett Thank you so much for your candor about side effects! It never dawned on me that if my mouth was showing side effects I might have some issues at the other end of my digestive system. I never though to use Desitin! Ha. Tucks didn't work very well for me (burned) but my MO gave me a prescription cream that worked really well.

JackieBird I had a total kick by your post to Shaz regarding steriods!

I am off to "be in the moment" with migrating birds! Birding is the only time I really can put this whole cancer thing out of my mind!

Warm blessings to everyone,

KImberly

fmmbw

Good morning March chemo sisters from Fort Worth. Just got my chemo date for 3/31. To say I'm like most of you. up/down all kinds of emotions. If I learned anything, it is worrying solves nothing, but I still can't help to do it. Going back to work on Monday, which will allow me to focus on something else.

Just letting you know, all your stories inspire me, and make me know you're never alone in this battle.

Jackbirdie

Welcome Kimberly! So glad you found us, but very sorry for the reason why.

Starting off your morning with the migrating birds sounds heavenly. A great way to be in the moment.

I love all birds, and on days I'm not feeling so hot I settle in at my bird-watching station my brother set up for me when he visited during my very difficult surgery recovery. I sit in the corner of a sectional sofa just next to a 60" window with pillows and blankies (and Jack the Wonderdog) all around. I have a three course menu for the seed eaters:

A roofed feeder that I put a "western" mix in (recommended for Oregon, where I am), a ball built just for black oil sunflower seeds, and a thistle sock. Lots of little birdies come, the most being Juncos and various finches. An occasional piggy Jay. Then I have a hummingbird feeder, which my brother found cast off in the bushes. He cleaned it up, sterilized it, and we made the "juice" (no food coloring). Those hummers come all.day.long. Endless entertainment and all the more special because my brother set it up lovingly up for me when there was little else he could do to helpmitigate the pain. He lives 400 miles away but we are very close. I treasure the relationship and feel........gratitude.

Jackbirdie

Welcome, fmmbw! So glad you found us. It's hard for me to believe this March chemo group has only been together for a month. We have bonded in a very meaningful way, with room for seriousness but also a lot of laughs. A life saver.You will find this is a safe place to say whatever you want or need to. When maybe friends and family don't really get it.

I wish you "fair winds and following seas" as you embark on this journey. We will be right here with you.

Katy

KBeee

Shaz, I am coping pretty well, in general. I always felt like my doctors minimized things because I was such early stage and treated it so aggressively. I always had a gut feeling it would be back...just not so soon. The good thing is that I do know that once chemo is done, energy and strength do return. I finished chemo in Nov 2013, and ran 2 half marathons last year. I feel like I am finally 100% again, so it is frustrating to have to be knocked down again. My bigggest fear this time was that they might minimize it and not do chemo. Thankfully new MO and I are 100% on the same page. I also am glad that I have a wig that I love. It looks way better than my crazy, out of control hair.

There are few "plusses" of chemo. At all. One I noticed last time however, is that the mosquitoes leave you alone. I usually get eaten alive, and I did not have one bite while on chemo. Apparently the bugs don't like chemo blood.

Last time, when I finished chemo, I took a weekly picture for the first year to chart hair regrowth; I compiled it onto a page. I will post it here after the first few people finish.

Hope everyone has a nice weekend

Jackbirdie

Arlene- welcome and just have to say, you are a knockout in those wigs! Which leads me to believe you are a knockout....Period. Best of luck as you travel down your path. I'm glad you're here with us. Just not why you are

Jackbirdie

Karen, I'm so sorry about your recurrence. As you explained, you treated it aggressively and there's nothing you could have done differently. I'm very happy to hear you have a great relationship with your new MO. So important!

Very interesting and pretty funny that the mosquitos will be leaving us alone. If only temporarily.

So glad you've joined us, and I hope you have a great weekend as well.

Trvler

Shaz: I keep meaning to comment on your migraines. That must be brutal. I can't even function with a headache. I have had maybe 3 migraines in my life so I feel for you.

Also, no major decisions like selling your house or quitting your job during chemo! Unless you are quitting for health reasons. That's different. I saw a woman who had stage 1 or 2 talking about cashing in her retirement and taking a trip. BAD idea, IMO.

Trying to catch up. I had my port put in yesterday and while the procedure was easy, I am in a fair amount of pain. It comes and goes. But I did a stupid thing. They told me nothing by mouth after 9:30 and I was so braindead I thought they said no food but clear liquids ok so I ate jello just before I left to go over because my blood sugar was low. They normally knock you out but they had to give me a mild sedative. It worked out ok pain wise but I felt so stupid admitting what I had done wrong.

Jackbirdie

Trvler- glad the port thing went ok. I had pain for days, and a weird sensation of something pressing on my windpipe (probably because something was, doi!) when I would get up or down, in and out of bed. I thought something was wrong, but now, 5 weeks later, I can gently touch it without hurting.

I did use ice over a towel, but I did feel the weight of the ice pack. Used the smallest gel pack I could find.

And of course, oxy.

When i go to infusion, I always ask them to spray the freeze-numbing stuff on the port area before they use it. They also wrote a script for a tube of pain relieving topical with lidocaine in it. You put it on an hour before you go to chemo, a generous dollop, then cut out a little square of Saran Wrap or "press n seal" and it will just stick to it. They say it keeps the cream in place, and keeps it from evaporating, and becoming less effective, as it would if you didnt cover it.

Trvler

Welcome to the new ladies.

Wow, this thread moves.

Just wondering, just based on THIS group, it seems like about 90% of people have some pretty significant SE's. But all the medical people keep telling me it's no big deal and they have made so many advances that it isn't nearly as bad as it used to be. Did all of you get those kinds of speeches?

greenae

Thank you, Jackbirdie!

The owner of the wig salon was soo helpful and understanding, She told me she would give me a "private" buzz cut right before my hair falls out and send me out the door rocking one of those wigs...lol.

Your posts re: the shopping rules in the middle of the night are also for Me! I am NOT at shopper...but something happened when I was diagnosed, and my latent shopping gene was triggered. My co-workers sent me a card and Amazon gift card, and I was online spending that money within minutes. I now have some Vera Bradley bags and wallets on the way, as well as a few tubes of Biotene toothpaste. I figured the bags will be a lot lighter than what I have, and I can stuff them with my chemo supplies. Because of course, if the shopping is justified...it Must be OK! Before my surgery I decided I must have an exercise bike, wedge pillows, new yoga pants,2 wigs, 3 hats, new white towels, etc, etc...and of course the post-op diamond studs. If I am going to get worse on decadron, perhaps someone should lock up my puter and fone at night? lol.

Anyways, I thank all of you for posting your thoughts and advice, and making me smile at some of this BC stuff...even though a lot of the time I want to cry. Going to try an force an "UP" day. Hopefully, the snow melts quickly...We Need Spring!

Love and hugs to all,

arlene

BBwithBC45

KBeee - I hope the spiders stay away from chemo blood, too. I do not like spiders!

Arlene - reading your posts is almost like reading what is my mind. I worry incessantly too.

Trvler

Oh, the mosquito thing totally cracked me up!

Jackbirdie

Trvler- yep, got the speeches. Sigh. It is barbaric, but I guess they do have better SE management than in the past.

Arlene! Lmao @ triggering latent shopping gene. You may have to put in some security measures, but for now, you done good! You do need a good bag for chemo, one that makes you feel good about walking into that infusion room. Actually, not walk. STRUT. You do need supplies to PUT in it. You do need wigs, hats, and now my latest thing, dangly, pendant earrings to go with the fabulous hats.

The exercise bike- awesome decision as exercise is in the top 3 things you can do to manage SEs. (The other two being hydrating well and eating small meals throughout the day). And that bike you can use post chemo to get back into great shape!

And lastly, diamonds ARE a girl's best friend!

PURCHASES APPROVED

SIGNED,

HEAD MANIC

Trvler

Katy: You are a crackup. I told my husband if/when I get through this, I want a dog. He would rather have me spend big $$ on a diamond.

kachincolor

Hi Trvler,

I think some of the speeches from medical professionals have to do with combating the "old" image of chemotherapy which for many involved a lot of very debilitation things like vomiting and diarrhea. I also think some of it has to do with whether or not one gets Neulasta from the first infusion, or if it is saved for later in one's treatments. My MO told me that about 50% of those who get Neulasta experience pretty tough headache and bone/muscle pain. That happened to me. I had heard from lots of women, before I started Chemo, that day three and four are the worst for most people and then things start to feel better. When I ended up in the ER with blurry vision on day six the ER doctor told me she sees at least one woman per shift struggling with the side effects of Chemo. I just think the SEs are as variable as each of us and they can only give approximates. I experienced less nausea after my first infusion than what I experienced in any of my four pregnancies.

The one thing I have learned for me--trying to be stoic and suffering in silence is foolish and doesn't allow me to focus on healing thoughts: I have learned to actually believe my doctor and I call her whenever I have a question or concern. Hydrocodone taken for three days made all the difference. I wasn't thrilled about taking it...until my cute hubby pointed out that my body was completely awash in taxotere, cytoxan and steriods!!

The great part of this group is that some women ARE sailing through pretty well and some of us are having struggles.

I hope you are feeling better today and thank you for sharing!

Warm blessings,

KImberly

Trvler

Haha. I have NO problem taking hydrocodone. I try to only take 1/2 when I need it.

I guess it's good to know what to expect AND it's bad.

Jackbirdie

I did feel a pang of disloyalty when I said diamonds are a girl's BF. In truth Jack the Wonderdog is my best friend. But I think it would be great to get both. Nobody deserves it if not you. 😁

Trvler

Jack looks very happy….and lucky.

BBwithBC45

Trvler, at first I was under impression that my MO wanted to know about all my SEs and would do something about them. Now it seems that I just have to deal with it as a normal part of chemo and the only thing I've experienced so fa that truly is of concern is neuropathy.

Sometimes I wonder if I'm a hypochondriac. My system is so sensitive, that I react to almost anything! After each surgery I had itchy, red rash for a week. All the pain killers I tried were giving me weird side effects, antibiotics made me sick to my stomach, etc. Not looking forward to the next nine rounds of Taxol.

StacyMc329

hi greenae... I have to exact same emotions going on. I start my first cycle on the 31st. Good luck. And I like the blonde.. Super cute.!

greenae

Hi All

My MO also downplayed SEs. Told me its nothing like it used to be, and told me to stay off the internet. Does the Claritin help with the Neulasta? My neulasta rx is getting delivered to me at my first infusion so I may dose my self the next day. Am worried most of all about the neuropathy. (Ok, I am worried about All of it!) I like to be active, and feel like a slug, unable to lift or Spin for past month.

Jackbirdie, I am so glad you approve...and I agree...Augie Doggie is my best friend...he beats the diamond studs...lol. His Christmas pic...

migrantt

italychick- you look amazing. that wig is perfect for you. kind of makes me wish i'd kept my long hair a bit longer..i chopped my hair before my first treatment and am getting ready to cut it shorter- figuring if starts falling out in clumps i'm going to mohawk it before i buzz it completely.

love the wig!