January 2013 chemo group
Comments
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Shannon - I found my head strangely shaped with my hair gone. I had no idea - i had to ask my mom if anything happened while i was a child. It's almost like my skull didn't fuse properly - i have an indent from the top of my head to the back ridge.
I know all of you ACx4 ladies have been through the wringer...but i am sooo envious almost all of you are staring down the end of your AC treatment. I'm beginning to think the treatment every three weeks is a form of torture. Sure i feel okay much of the time but it just seems like it's never going to end. I started 1/10 and i still have two months left. I am half way through so i need to keep my eye on that.
Jubby - your description of floating in the water (nude nutted) inspired me to plan a trip to Hawaii after this is done. Maybe i'll keep my eye on that
I'm thinking Kauai as I've been there before and just loved it. Any other suggestions from you ladies? -
i just found a wicked good deal to Honduras...sounds very off-the-beaten path. I think we ALL deserve a vacay after treatment and the recoup period...my surgeon TOLD my husband and i we were morally OBLIGATED to go on a vacation after this was all over and behind us...we deserve it! My treatments will take us through to the end of July/beginning of August timeframe (including rads). We were in Italy last summer and this summer i just want to chill in the heat (oxymoron) and enjoy my backyard and gardens. But since winter in Canada blows dead bears, we're planning a fun-in-the-sun getaway sometime between December (i'd LOVE to skip Christmas!!!) and late February. Pick up a last minute deal to someplace hot, exotic and non-touristy...no kids. Our idea of heaven. What's you dream vacay???
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Julesdenver, I thought I was the only person to have an odd shaped head. When I was kid I asked my mother what happened to my head, because I have dents, lumps,large square bumps etc. She told me it was from when the Dr. Pulled me out and I believed her because the shapes look like there is a hand print of someone squeezing and pulling on my skull. I have often wondered if they have a name for it and if it is a deformity.lol!
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I had to start taking abien after about my second treatment, and it works wonders. I do wake up feeling fine & refreshed.
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Honduras sounds wonderful! I know many that have gone and loved it. So this all brings up some good questions. I'm planning this between my chemo and radiation. I wonder if that is a bit risky? I'm REALLY itching to go somewhere soon. This cancer postponed a trip to Italy (which will be rescheduled for the fall - childfree!)
Normally my dream vacay involves a european destination but I cannot fathom doing the country hopping right after chemo. The interim dream vacay is sitting my butt on a beach somewhere under a nice umbrella. And a fruity drink. With an umbrella.
There are a few on here from Florida as well - any recommendations for that beautiful state? I've never been and it is a lot closer than Hawaii. I think they have fruity drinks there too.
Shannon - quick question - how long are your rads? They are recommending 5 weeks for me.
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macyhen111 - i wonder if they used a forecepts on me. It kinda looks like a buttcrack
) Not sure what it is...i see all of you with bald heads and think you all look fantastic. After 1.5 months, i'm still shocked everytime i see myself bald! -
Julesdenver, I have been blessed so far to still have most of my hair, it's ugly and shedding but still holding on. I know I will look a ham (hot ass mess) when it falls out completely. My mo says the new chemo will definitely take it out so I'm trying to get myself prepared for that.
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Paula, Bryona, LeeA, Skigirl, ywheels22, Thank you all for the great suggestions! I will try duct tape and lint rollers to deal with stray hairs. Bryona, Hope your last AC treatment went well with minimal SE!
Honeybair, fighter69, Glad to hear the great news about tumor shrinkage! I am also doing chemo before surgery and praying for tumor shrinkage everyday. -
We all need an all inclusive tropical adults only place with pool boys and cabanas.... just the girls!! Belize, Costa Rica, Virgin Islands, Bahamas?? Is there anywhere in the US? Gulf Coast?
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Hey Jules- don't know for certain about rads until i meet with the RO but i was told by the MO to expect 6 weeks...yee ha. Do whatcha gotta do and mule through it...but hey! At least it will be summer in my part of the world and i can sit outside wit da pugs and bake in the heat...under my gazebo, of course. This will all be SO much more tolerable when the warm weather comes. I've always said at 5'2" that i am built too low to the ground for snow and now to add insult to injury, i've got a wonky bald head exposed to winter chills...decidedly suck-ass.
The winter vacay someplace warm is a must...Florida is great for us northerners all winter long and i took a trip to Baha that was great, too...warm and close but quite unique. So sorry your Italy got put off...Florence and my villa in the Tuscan hills was the vacation of a lifetime! The food alone is calling is back!
Ladies, if its possible, we ALL deserve vacations after this bc BS! If its not in the cards...what can you do to treat yourself (and your loved one(s)) to a really cool STAYcation? Anyone have any good ideas?
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I agree that we all deserve a vaca after this. I booked a trip to the Keys for DH and I in July. Okay, so it will be miserably humid, but I wanted to be done with everything (except maybe reconstruction). Plus with the off-season rates the condos/houses are going a great deal. And all I want to do is sit my butt on a beach with my feet in the water. So that should cool us off plenty.
I've always wanted to go to Honduras too. My mom was born/raised through her teen years there. And my ultimate retirement plan is to escape for good to Costa Rica. I was laying out my plan recently, telling my dear friends we should just pack up and go. Lo-and-behold, the next week my DGF sent me an add on Craigslist from someone with a beautiful plantation in CR that wanted to swap for a home in Colorado. Hmmmmm, if only I didn't have medical issues to sort out.
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Jubby, thanks for that link. That sounds like an awesome ride. Hmmmm, there is my vaca gettaway. LOL
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Bryona, best of luck with the last AC treatment. You are one tough, amazing woman. You'll be in my prayers.
For the rest of you whose tumors have shrunk on chemo - fantastic! You KNOW the chemo is doing its job.
As for the bald thing. I think each of us probably has some odd parts to our heads. My head looks perfectly normal in photos, with the exception of the ears that can lift me off the ground in a high wind. When I study it in the mirror, there's a ridge halfway back that runs from ear to ear across the top of my head. I'm really skinny, so the back of my head at the base of the skull is pretty darn bony looking. It is what it is. I do remember my mom telling me that when I was born the first time my dad saw me he said I looked like I went under a low beam at high speed.
Holly, there were times when I thought it might have been neat to be named Holiday. But, then, my middle name is Ann. Who would want to be named Holiday Ann? I can accommodate a lot of people..... (And not in a good way is what I imagine some less than pure minds might think.)
When I was going through the chemo for Hodgkin's, I had lots of problems with the first regimen after getting it for three months. I started treatment on 9/17/87 and I think I was getting two separate rounds per month. I ended up in the hospital in December so didn't get a treatment in December at all. My hair started growing back during that hospital stay. It came in so curly that it didn't matter how long the hair was or whether it was growing in evenly or unevenly. I would imagine that the regrowth might be akin to a child's. By the time we've gone through four cycles of chemo, our cells that are going to be harmed are probably harmed and they're probably going to want to start repairing themselves as soon as the environment is right. Having said that, I still have some hair. I never went completely bald. I buzzed my head down really, really short, but never went bald. I have had some very slow regrowth of the lady parts hair, that I shaved completely. I can tolerate head hair falling out around the house, but I'm not sure I'd like anyone to see any other type of hair on the floor or the furniture. I've also noticed really slow growth on my legs. I haven't lost my eyebrows or lashes or arm hair. I guess we'll all see how our hair grows back in. I'll be ready for it because I do not like touching my almost bald head.
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Jubby, I have had issues with each of my IVs I'm told as a result of the Taxotere...the first one was more like a chemical burn and is still healing (doesn't hurt just discolored) 7 weeks later, and the next two are just more like bruised areas. From the first issue, the nurses were pushing me to get a port or picc, but after the stories from the ladies here, I was less than interested. I was assertive and asked them to work with me each time until we both agreed we had exhuasted other options...I found one nurse I call the vein whisperer because she really works with me each tx to find a good vein. Puts a heat pack on, thumps on my arm to plump up the candidates, etc. I only have 4 rounds and just didn't want the risk of the other procedures...I think a lot of their pushing me was to make it easier for them and not me in my opinion. Not sure how many cycles you have, but I think you should at least be able to see how far you get without needing any other procedure...
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Vacation planning sounds like a great idea. I won't be through until April 2014 because I'm in a clinical trial, but I feel inspired to plan a short get away in late September of this year. We're not far from Quebec - a possibility - or the coast of Maine where we spent three weeks last summer.
AC #3 tomorrow - spending the night near the clinic due to a forecast of freezing rain. We drive an hour each way through beautiful country, but very hilly beautiful country. Dinner soon and then a movie on the iPad and to sleep. I've started to remember my dreams again - a good sign!
Will hair grow back during radiation? All I want for Christmas ... LaLaLaLa
Best wishes to all for a happy weekend, Martha -
Hi all,
I noticed that several of you have started talking about the next step.... radiation..... and I'm a little confused about why we still do that even with chemo. I met with the radialogist first, before the oncologist so at the time I had no idea if I was going to do chemo..... but if the chemo is for killing any sneaky little cancer cells hiding out in the body why doesn't that include the breast?? In other words, if you do the chemo why do you still need to do the radiation.... isn't that over-kill (literally).....
Just interested in your thoughts...
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Jayjayc, I think it's because chemo may not work effectively for everyone. I've seen on the board that some people had chemo before surgery and their tumors didn't response to chemo at all. So for people who do chemo after surgery, in case there are active cells left after chemo, radiation would kill them all.
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I'm willing to try the whole buffet if it means the little bastards are dead and fried...
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Done with AC! Woohoo! I wish I could take a loverly vacay RIGHT NOW, but I'm pretty sure when the SEs hit, I'd be sorry. And there are still those pesky 12 rounds of Taxol still waiting for me. And the Herceptin. And the Tamoxifen. But who cares? Not me! Not now! Done with AC! Take that, you stupid red devil!
I'm struggling with the vacation planning. This BC nonsense disrupted my long-awaited trip to France (or Quebec -- I hadn't quite decided) to complete a month-long language immersion program this summer. That's the trip I really want to take, but it's a summer-only thing because of my teaching schedule. I guess I'll do that next year, but there is NO WAY I'm waiting that long to celebrate being done with this crap. Maybe I'll just head up into the mountains for some hiking. Wow, it would feel amazing to be able to hike and to surround myself with nature instead of toxins...
jules, I know what you mean about feeling like it's never going to end. I had my first round of AC Jan. 16, and right now I'm scheduled for my last round of Taxol on June 7. June?! Really? It feels so far away! Time is moving at a child's pace right now, and I'm not a big fan.
Martha, I'll be thinking of you tomorrow. You go in there and show that AC who's boss! You got this, honey. (((hugs)))
Skigirl, I'm a bit worried about those cabana boys. I think boys might be woefully unprepared to handle the glory that is our brilliant group. Maybe we'd need to advertise for some cabana men...
Oliverhog, I sat a moment in awe, just taking in the Holiday Ann comment. You really went there. I am so proud to know you. LOLOLOL!
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Holly you crack me up, holiday Ann, that's great. Mind you, I did teach a Dominic hunt once, oh dear, some parents. I think the worst name was a poor girl called Poizhon Blayde. Poor wee soul.
Congrats Bryona, finishing AC must feel great.
I got a second opinion, no taxane needed for me, the risks outweigh the benefits, so we are stopping after next weeks AC. Yay. He said cos I only have a grade 1 there's probably no use in chemo anyway, if I was grade 2 then maybe I'd get a taxane. He said if it was going to keep me up at night thinking I hadn't done everything then we could do it but it would mean another anaesthetic, portacath and all those drugs, for maybe 1% survival improvement, and he's already got me at 96% (surgery 90, chemo 3, tamoxifen 3). Interesting cos the other once has me at 88 (surgery 80, chemo 4, tamoxifen 4). It is of consequence that neither oncologist factors radiation into long term survival as it does not have an impact on mets, although surely if the body is fighting cancer in the breast at a local level it makes for an environment that is easier for mets to develop.
On that note,
I'm flagging rads, I'm having a mx with recon instead. There doesn't seem to be anything logical or curative about radiation, to me.
Sore boobs have been bothering me for a month, since a week before my last period. I woke up this morning in a panic as i could hardly sleep my boobs were so sore and the surgery one is a bit pink, and so i thought I had IBC. I cried, rang my boss and took the day off work, took a clonazepam, rang the surgeon got an appointment for tomorrow then spent the day with my mum. This afternoon I got my period! Haha, sore boobs explained, panic over!
Love and laughter
Holly -
Holly~I lived across the street about 20 years ago from a 14 year old girl named Robin Hood. About 10 years ago I had a neighbor named Holly Wood, though, in her case she married a man who's last name was Wood. When she moved in next door, she introduced herself, then quickly said, " I know, I know, it's crazy, but its true!"
I'm glad you're almost done. I'm start 12 taxol on Friday.
Blessings
Paula -
Julesdenver,
I have spent most of my life in Florida and I love the Keys. A great vacation for me is to fly into Miami, rent a car and drive down the keys. Hotels populate almost all the islands and they definitely have fruity drinks. Stay in Key West and take a quick trip to the Dry Tortugas. Do some googling there is tons to do and more economical than other tropical vacations.
Sheryl
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I have a feeling a few of us would get 'lost' on Duvall Street
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I'm seriously in love with this place. Fortunately, my husband is, too:
Tunnels Beach/Haena/North Shore/Kauai
http://www.aloha-hawaii.com/wp-content/uploads/2010/08/tunnels-beach.jpg
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Come to Australia ladies! Hot in your winter and I can recommend an awesome itinerary. LOL. Just a pity it's so freaking far. I once flew to the States to visit my best friend from school (she was an exchange student from Santa Fe. Melbourne, Auckland, Hawaii, LA then San Francisco (her university). Cheapest flight I could find as a uni student. I think it took me 48 hours to get there. Flight times are better now (or at least more direct). And if you chose my el-cheapo route, you could always visit Kiwigirl in NZ
Hoep49, I saw my physio today (I see one to prevent lymphedema and to try to increase my arm mobility since the mastectomy). She thinks I have tendon damage not a thrombosis. We're doing ultrasound and may tape it if it gets worse. Time will tell…..I am going to persevere on the IV front too.
Also, just curious.... I have one tissue expander in and am planning the reconstruction after chemo. I am opting for a diep flap reco and will also have the other boob removed at the same time. You only get one crack at the diep so I want both done given my family history. How long are you waiting post-chemo ladies for reconstruction? I’d like it done sooner rather than later to knock my treatment on the head but would love to hear from others. Maybe I’ll need a break. I guess I can play it by ear.
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Bryona, say it in a Mae West voice and it sounds a lot better. I'm Holiday Ann. I can accommodate a lot of people, if you know what I mean. Come up and see my some time.
When I worked as a transcriptionist at Northwestern Memorial Hospital in the nuclear medicine department years ago, there was a nuclear cardiologist with the last name Holly. The other transcriptionist introduced us. Dr. Holly, this is Holly. Holly, this is Dr. Holly. He laughed and said it sounded like something you'd hear in a James Bond film.
I second the trip to the Keys. If you've never been, that's a fantastic place to spend some time. We rented a condo that came with a sailboat. My ex grew up on a boat off Honolulu so he was quite the seaman. In more ways than one. I would imagine he still is.
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Do you mean he knew how to tie knots and pull on sheets? Lol
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Holly, he also knew how to be a d**k. LOL. Actually, I thought I hated sailing. I'm not much of a wind person. However, now that I don't do it anymore, I really, really miss it. The Florida Keys was my first sailing vacation. After that, we rented a 45' sailboat in the Sea of Cortez off the coast of La Paz, Mexico for a week. Loved it. We rented a catamaran in the Caribbean for a week. Loved it. Some friends of ours owned a 50' Swan that we sailed off the coast of Turkey, raced in a cup race off Sardinia, sailed in the British Virgin Islands and then frolicked around off Martha's Vineyard and Nantucket for a week. My second husband gets seasick, so any kind of vacation like that is out of the question. I'd do the sailing all again in a heart beat.
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My, my Holiday Ann you sure do "get around". LOL Seriously it sounds like you have been on some great trips!
Duval street here I come . . . . and to possibly never return. Funny, skigirl!! A trip to Auzie via Key West via NZ sounds like a plan to me. I wonder if the people that "disappeared" in the Bermuda triangle had just gone through cancer treatment?!? I'd take my fam and disappear in a heartbeat after all this. Retirement in Costa Rica is sounding better all the time . . . at 40 39.
Jubby I'm curious too about when I can have recon. I have the expanders right now and can't remember what the PS told me. I thought it was about 6 months post chemo/rads. My appointment for final fill with him is next week as well as meeting with the RO so I will have some solid answers. I'm sad thinking I will have to sport these lop-sided turtle shells in a bathing suit (if I even go there) on our trip this summer. I'll be done with rads but not the recon before we go, I'm sure.
My DD is sick and the lady that sits across from me at work is sick. Please, please, please don't pass it on!! Now I can't find the lysol spray to spray down the house after my daughter crop dusted with her coughing this morning. Oh dear! Having the house cleaned today though, so hopefully she'll pick up those germy-germs.
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My ex went to school with Duncan Hines and my ex brother-in-law is named Starsky Hutchinson PARTRIDGE...like being a member of the Partridge Family wasn't bad enough, you name him Starsky Hutchinson??? (i kept my OWN last name on that one...thanks anyway!) I went to school with Pierre St. Pierre and a urologist at a local university hospital is (honestly) named Dr. Leak. And a know i woman named Penny Nickel- married into that one...wouldn't you just keep your own last name???
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