Anyone Starting Chemo in June 2016

Good evening everyone.

I am going to miss many by name - but many of the sentiments are the same as many have already listed.

yes, it is okay to be frightened, angry, upset, pissed off and confused at what is happening to you. do not linger in those moments, let them out, hear them, manage them and move past them the best way you can and the quickest way you can. Focus on the positive days and the positive outcomes. talk to other survivors and get their outlook - they survived and you will to. talk when you need to, you will never bother anyone about it no matter how many times you bring it up. If you have not moved past it, let someone help you, often, whether a friend, caregiver of you bond with someone here - we are all here for each other, no doubt. even the drs and rns are there to listen if you need them - at least mine have been. lastly find a therapist if you find yourself struggling with something. Cancer is a big deal. You all are amazing women and you all have us by your side.

Which leads me into the haircuts. siince i just went through that flippin' emotion here is my point of view. if you have super long hair cut it short now because the buzz cut will flip you out. i thought 'i can do this on my own, i'm strong' - bring someone with you for support to help you keep smiling. I went from long hair (mid-back) to short, to pixie cut to mohawk - sadly the mohoawk started shedding bad and it looked plucked so i shaved it. Great Clips (if you have one) donates the long hair (12") and will do the final shave at no cost to cancer patience. hope that helps. and you will cry, most likely.

As for life changes - I did this way before cancer - i left an interior design job making great money to start a volunteer position running my own cat rescue organization www.allfurloveanimalsociety.org and I have loved every minutes, well okay most minutes. my suggestion if you want to know more about that - we can message each other another time. But whatever you do, find a group where you are and work with them. many (rescue) groups are small and could use solid, go-getters, who can handle responsibility, communication and not flake out after 2 months. it is hard work and not all of it is cuddling and playing with the animals. there is a lot of work to do to raise money to care for them and help get homes for the cute and cuddly animals.

spb1954 - welcome and I most of the suggestion I had for you have already been stated. find what works for you - make sure your drs know what is going on - do not wait to tell them something is wrong. you do not need to suffer any more with SEs if you do not have to. keep a daily journal for the medical you take, when you take it and what SEs you have. i also include how i am feeling throughout the day. bad days - write down what it is. good days - say that too.

Welcome to all the newbies. Share your good times and bad times. we help when we can and we get strength from your good days. everyone reacts different and no one hurts more than another. we hurt the way we need to in order to heal the way we need to.

sorry so lengthy.

my chemo 2 was today. not to bad. ended by rushing to the high-kill animal shelter in town to rescue one of our abandoned adoptees form there. He is safe (Wyatt) at a new foster home now and will get lots of love and attention before being re-adopted.

then hubby made me spagetti. YUM

have a great night, may you all sleep with no SEs to bother you. Smile in the morning just to piss off cancer!

or a dog or a bunny or a ferret or a bird - or whatever softens you.

but all I ask is adopt. do not shop. thanks for letting me say that!

(yes i have more cute pics - trying to space them out)

Rev... Sorry to hear about the pubes. I recall being more shocked about them than my hair on my head... For some reason I had forgotten we would lose pubes too 😂

On a completely opposite note... I noticed several chin hairs and a few on my upper lip!!! Haven't seen any since my hair fell out 5 weeks ago... IT'S GROWING!!! Woo hoo!!! There's hope gals.......

Welcome to all the new people!! No way I can go back and grab everyone's names so a group ((hug)) will have to suffice 😘

Thanks for the reminder to pick up my lottery ticket!! 🎉

-Keely

doing a quick post-

Really sick again. Not very positive. About to wake hubby to ask for help but can't move yet. Came down stairs around 1:30 am, didn't want to disturb him. I think not eating much is also impacting me but just can't manage much. Hope everyone on this thread has a better day. Will catch up later. Fingers crossed one of the many meds help

Hi girls - working from home today so I'm going to try and be a do-gooder and actually be productive. Getting the buzz tomorrow - 3 1/2 weeks after first Taxol the shedding started and now I'm grabbing handfuls whenever I run my hands through it. First i was mortified, now I'm just grossed out that I leave a trail everywhere. I went from shoulder length to a bob just before surgery (BMX) and I'm glad I did that first. I'm nervous about the buzz and really hope I don't cry. I stopped my wine and vodka fetish after surgery and would love to drink a glass or 3 during the process but I guess a Xanax will have to suffice. Bringing my hair guy a bottle of scotch since he will be losing my every 6 week business for a while. He's going to shape up my wigs (3) at the same visit. He offered to come to my house but I think it's better for my boys not to bear witness.

Saw my Mo yesterday before chemo #4, had an interesting convo about hysterectomy - I was planning one before I was diagnosed for bad paps and bad periods. She was strongly against taking my ovaries out even though I'm 100% ER/PR. Her point was that keeping them as long as possible is a quality of life thing and being able to stay on Tamoxifen and stave off osteoporosis and protect my heart. She said 'you can always take them out later buy go ahead and take out your uterus if you want." Interesting and food for thought. Apparently the Her2 positive trumps the ER more than I thought.

Anyways - so glad to read and catch up with you girls - welcome welcome to the new folks, sorry you are here but this is an amazing and positive and supportive group in good times and crappers.

xoxo, check in later:)

NattyB - I am with you on the shave this weekend. I am doing it Saturday. Its a little early but I dont think I can take the shed. Plus my husband has to travel for work and I dont want to need the shave while he's gone. I want him with me. I think its going to be kind of freeing. I am tired of worrying about it. I plan to cry and I don't care. But then it will be done. I hope your experience it what you want. Remember you are not alone. Post some pics if you feel like sharing.

Krekre: my most high-quality wig is hand tied. That means it poufs. I felt really weird when I first wore it, and was grateful to have other things I could wear - like a baseball cap - to "go undercover," and avoid the big C conversation. I understand about putting yourself out there this Sat. I felt vulnerable and even irritable about doing that myself.

I humbly suggest that you start wearing that wig now to get used to it. They can go a little rogue sometimes, and it helps to know how to adjust them and how to feel relatively comfortable with them on. They are best worn for short amounts of time if you can. For bonus "embracing my cancer" points, you can eliminate the pouf by accessorizing the wig, like this:

Finally, a halo is a band of hair that is completely open on top. You wear a hat over that, and it is probably the most comfortable you can be with fake hair. Of all of my goodies, the halo is the thing that looks the most natural. I'll be thinking of you. Good luck!

Thanks for posting the spreadsheet, LJ! I can give you an updated one if it is not much trouble to post it. I have been updating it since I sent it to you. I'm glad you are able to get out of the house now!

If you are new, please fill out your profile and make it Public so that we will all be able to see your Dx and treatment instead of trying to remember.

Dolly, to answer your question about what I might have purchased at the "ghost mall", I did indeed give in to temptation once I had walked past the Ben and Jerry's Ice Cream stand 15 times or more! I bought a waffle cone with a scoop of vanilla frozen yogurt and a scoop of coffee ice cream. It was worth the brief guilty feeling

My MO appointment was as expected yesterday. I have to drive an hour each way to have my vital signs taken, tell her I'm feeling okay, have her listen to my lungs and heart and shine a light in my mouth. She never smiles and is very critical of anything I ask about or do that is outside her limited experience. The first thing she said when she entered the room was "What do you have on your feet NOW?" It was like the Jake at State Farm commercial -- I said "Sandals?" She looked again and said "Oh, they are socks - I thought you were doing some other weird thing to your feet." She must have been referring to the fact that I iced my feet during my infusion last Wednesday. (I was wearing peds underneath my sandals.) I do not feel like I can discuss anything with her. She is very defensive and abrupt. She is quite young and I think she must have fast-tracked her way through university and med school, never experiencing much of life outside of school and studying, and not gaining much "people" experience. I did mention that I had again lost some weight after the infusion, however I was not concerned about it and knew I'd regain. She said I lost weight because my appetite was down and I was not aware that I was eating less. I just nodded, because it wasn't worth it to tell her that I weigh and track all my food and know exactly how many calories I am eating. Then I told her that everything was going well except that the lab did not have my blood draw order when I went in the day before chemo. She said that was not her office's fault. The lab tech did not know where to look in the system. She often says that things are not her fault. You'd think she would try to work on improving things for the patient instead of making sure it is not her fault. Anyway, that's my rant about my MO.

Pepper, I hope your infusion was trouble-free and may SE's be few today! Your Huffington Post article was very well done!! PM me your email and I'll send you the latest spreadsheet.

bbbb, I'm so happy you got good results on your scan! Hooray - one less thing to worry about.

Lily, the vet I use has been wonderful over the years. When both DH and I were working full time we could bring an animal in first thing in the morning and they would keep it all day for us at no extra charge. I do the vaccinations myself (except for rabies), and we try to keep our vet costs down. But sometimes it is costly. One of our young cats, who died of intestinal cancer, was getting oral chemo for a few months. Another cat had to be hospitalized with pancreatitis for a week. He's okay now. But most of the cost is when a dog or cat gets old and has to be on some daily med like Metacam for arthritis for years.

Heathet, I hope your stitch removal is really happening today. Good luck!

Joeychen, is your neck feeling any better? I know those things can take a week or more to start improving.

Jenisis, welcome. I hope you can keep working. Bakersfield is a big place for oil & gas, and our economy has been very quiet too.

Cody, I'm so sorry about the lymphedema. Hopefully the PT can get it under control to where it will not be a problem.

I know I have missed many by name, but I am thinking of each of you and will catch up later. Right now I need to get busy before the day melts away. Tomorrow thru Sunday I am planning to camp in a beautiful area of Sequoia National Park called Mineral King. I will do two or three day hikes at high altitude - over 10,000 feet, where the trees are scarce and the sky is sooo blue. I need to pack and plan my meals. Two friends are meeting me up there.

thanks Moondust, my neck is starting to loosen up, yay! Going to just do a Norco at night and see how I go during the day with otc meds. Got the ok from the fillin oncologist (mine is out this week) that ibuprofen is ok, which I much prefer for muscle type stuff

Going for a walk yesterday really helped too. This afternoon I'm hoping to ride my motorbike into San Francisco (about 30-40mins) as I have a get together with a visiting friend, so hoping the current relative body calm continues, a bike ride is certainly good my my mental health

Oh, and edited to add, sorry your MO is such a downer Moondust, that sucks. I haven't seen mine that much, she's nice enough, a little stiff/cold maybe?. I see her on the 20th, day before my second chemo so will see how that goes. Strangely my surgeon is so much more personable, you'd think it would be e other way round. I think in the Kaiser system they don't like to deviate often from the tried and true, but hey, guess it's tried and true right! Certainly I appreciate not having to get insurance approval for stuff, most everything just happens, more or less on time

Hang tough Junies!

Cheers,

--jo

Moondust - I did get my stitches out today! It looks pretty good. He doesn't want to see me back for 6 whole weeks! Crazy since I was going to the office once a week! I'm a little nervous, it's kind of like letting go of one of my security blankets always having a doctor to check in with once a week!

Oh Knardo - so sorry you are having yucky thoughts, I swear it's the hormones and the stress of it all. I go there lots of times and a friend who is 2 years out from treatment says she does too so it's just the beast that we get to tame. We will virtual hug you through it.

Acie - its helpful to know someone else will have a balding weekend. The shedding once it starts is epic - every time I run my hands through it I get a handful and it's kinda embarassing to have it on my clothes even when I just swiffered myself. It's time. Cody - awesome that yours has hung in there this long - I still have hair everywhere else but my dome is giving up.

Those of you that are "getting wiggy with it, lol" have you noticed the poofiness subside after they are worn for a while? I'm trying to decide how much to ask my hairdresser to thin them and I'm afraid itll be too much if they need to "relax" first.

jenesis - I do weekly Taxol and Herceptin (welcome to the triple+ club:) I started shedding almost to my 4th treatment -3 days before actually. I'm sure someone else will chime in who is doing the every 3 week plan - maybe Heathet I think is on the same regimen as you. In looking at your profile - did they start you on Tamoxifen already? I'm curious since I was told that I'll start after chemo.

Cody - I'm on taxotere , Carboplatin and Herceptin and its day 13. I'm just starting to shed but not on my head - it's staring down below! My head is really itchy so I think I'll be shedding soon.

Heathet ....are you on the every 3 weeks like I am? When did you start? I started Carboplatin & Taxotere on 6.27.16 plus Herceptin & Perjeta.

Hair pics 36 days after first chemo whilst cold capping. It is hanging on for dear life!!! My amazing wee head is trying hard to NOT let too much hair go. I shampoo once a week and brush every three days.,. Not my usual beauty regime... But it is keeping it on my head sooooo far. 10 weeks left til last chemo..., will it stay or will it go?