March 2011 chemo-lounge
Comments
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lilylady, that is flippin' CRAZY!
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It's been almost one year since I stopped wearing my wig. When my hair began to grow back, it had a slight wave. Now it is back to its former straight ways and it doesn't want to do much in the Ohio humidity. Here's my timeline...my hair no longer holds that nice shape I had just early last month, but I won't complain...
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Wow! That is a huge bill.
Lily, I am so glad to hear your Doc got you the treatment. Yay! He sounds like a wonderful doc.
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Greetings all, from Germany! It is about 72 degrees each day. My Nebraska NIGHTS were warmer than that and our area is still in a heat advisory. It is so lovely here and our host family delightful. Definitely a get-away that was sorely needed for my sanity and well-being.
Lily, we were certainly one of the slugs this time. We've been bumped to first class on occasion but never for a flight this long. I always offer but rarely gt "invited". Other than the dreadful overnight flying and me unable to sleep, it was fine. We slept 12 hrs and were ready to go today. Will see if I can figure out pics on my iPad. If not, when we return. Stay cool and comfortable0 -
Want me to bring back old memories? 7 hrs in the chair today getting my first tx of perjeta/herceptin/taxotere. Hoping it wasn;t both my first and last. NP said the fight for approval is getting very ugly. She went to an informational meeting last week put on by the drug co and when she brought up tx for a 3rd line chemo patient (me) he shut her down immediately. he reminded her and all the others with the same issue that FDA approval was for first line patients only and they would not be assisting in getting off label approvals at this time. He also brought up there are trials available for advanced patients right now-problem is I have already failed on the placebo drugs and only 50% are getting the real stuff.
So I have walked the dog and drank tons of water tog et this stuff moving but it is nerve wracking waiting to see or feel for SES. I will let you know how it goes.
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Lily - saying extra prayers for you. I can only try to imagine how hard this is. I hope the side effects are minimal. Hugs!
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I'm an idiot - had a long thoughtful post that I just lost... Lily, hoping your doc will continue to work his magic and provide Perjeta by hook or by crook. Hoping for no SEs. How are ya feeling?!
Putting Summertime by Jazzy Jeff and the Fresh Prince on the jukebox. It's an oldie but I love the line "summer's a natural aphrodisiac". Heading out for a walk now. Since I don't have the umph to try and re-write my long post, please just imagine the witty, sweet comments I've made to each and every one of you by name!! Hugs to all!
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Lily - sorry to hear the scan news - I hope you don't get too many SEs and that your lovely doctor finds a way to keep the treatments going. I know research is expensive, but those costs are just ridiculous. Keep the pressure up on all of them - it seems like you have to be incredibly pushy to get treatment that should just be automatic. The docs all seem very excited about this treatment though. You can do this - you managed last time and know how to handle it. We are all thinking of you.
Kristy - have a wonderful time in Germany and keep warm. Europe is fascinating - so much to see. Good luck with the weight loss trial - all the evidence shows it does make a difference (so why can't I stick to my diet!)
Stilts - fingers crossed for the "lottery", I don't have rashes with the Arimidex (yet), but moisturise alot in case, my problem is wrist pain - its getting hard to hold a pen - good thing I mostly write on the laptop
fluffqueen - well done at getting the scan - all mine are still "No Way"
Maxine - Having the same problem with the self indulgence - but really need to drop more weight. Glad the MRI was all clear - I hate those - seriously claustrophobic.
Silia - hooray for the drain out - I kept hanging mine on a chair and then walking away dragging the chair behind me - not a good idea.
KsMatthews - clear scans! - best news ever.
We got back yesterday from the Canning Stock Route. 14 days of tent down in the morning, and up again at night and then driving across some serious rocks, sand dunes and corrugations. Its a weird feeling being so far from anywhere. There is one Aboriginal community store half way (at about 900k) - and it had a toilet and hot showers! I am sure we needed it. You take all your food and water for the 2 weeks, and camp in the bush, although there is one well on the way that is drinkable - and you could boil water from the other wells. Nothing serious went wrong, although some of the 4WDs needed running repairs. One year someone broke a leg and had to be driven for 3 days to get within reach of the Flying Doctor - (didn't know that till after we were on our way). At night we sat round a fire and watched the stars. For me this was a real mental milestone- I had this horrible dread that I would not be around to do this , and now feel really positive about the future.
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Penny, while I would never survive that long without a shower, and fear of sleeping on the ground, that adventure is so cool! My PS just hiked to the bottom of the Grand Canyon with his wife on one of their first trips away from the kids. I told him he was quite the romantic, but they had a wonderful time. I am hoping to feel positive after the pet scan on August 14th. I know that is silly, but I am hoping to have someone say everything looks clear one time and then I think I can move forward.
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Well I guess I know what real chemo feels like now. Sickest I have ever been since starting.Pretty much all tx have been fairly easy for me but this has made me a miserable whiny ass. Pretreatment drugs lasted 2 days then all went downhill. I won't go into it= you all know what it feels like. I didn't get sick last year til Tx 6 so I totally wasn't expecting it. They reminded me it was a full double dose of all 3 drugs so I guess the Taxotere is the villain.Tastebuds gone already and hair falling out in handsfuls after only 5 days. Not going to shave it yet but it is starting to hurt-so may not be far behind.
Still no word on wether the tx will be my first and last. Even after all this time I still find it hard to believe they can measure your life in terms of money. And that is exactly what they are doing.
Penny-so glad the trip went well. I remember what a blow it was last summer when they wouldn't let you go. It sounds like a trip out of time-a once in a lifetime experience. I'm like Fluff-not sure it would be for me but what an experience it would be. There probably aren't that many places in the world like it.
Good thing is I have the Olympics to watch over the coming weeks. Has anyone heard anything from Kym?
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Lily, thinking of you always. I hope the new tx is working it's magic. Sorry you are feeling so bad from the SE, i pray it will be worth it in the long run I'm hoping the first tx is the worst. I remember how strong you have been through this all, I pray you continue to have that strength and as you know the support from your family and your March 2011 lounge sisters will always be there. (((hugs)))
Kristy, i hope you are enjoying your stay in Germany. I went there many years ago. I visited Baumholder I was there in November and it was icy and COLD, but it was a beautiful place.
Penny sounds like you had a good trip and you overcame mental milestone...yayyy.
Maxine i am glad your MRI was good. I haven't been able to talk my onc into any additional scans or an MRI. I think he get tired of me asking about them. Fluff I don't know how you were able to get your doc to agree to yours..Good job!! I'm scheduled to have my mammogram in September. I forget what they will do on the mx side. I know they can't do the regular mammogram..so i'll see.
Glad your drains are out, i hope you are healing well.
My fiance is rushing me he and i are getting ready to go to the movies to see the Watch.
Enjoy your day ladies.
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Hey stop back by and give us a review-I thought that looked funny. I saw the male stripper movie and it sucked.
Spreading good news. After a hellish weekend I can say FLUIDS ARE MY FRIEND!! Got a big bag today and nother tomorrow and what a difference. Whew!!! Also had to file for short term mdical because No way am I going to be factory ready by the end of the week. Also I was told by the onc office that I will be getting at least 3 tx of the new drug-and I am not worry about how it will get paid for. We will do the 3 tx then scan and hope off the chart results will speak for themselves. I will stay off owrk til then and use the same philosophy-dont worry about payong my bills something will work out. S0rry I have no idea why the font changed-it is embarassingly large-my news didn;t warrant it but not re-typong. Love to all!!
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Lily, The big font is perfect for the FANTASTIC NEWS you shared about your treatments. You are so blessed to have a awesome Onc who's going to make sure you get the treatment you need. Also I'm so glad the fluids have made you feel better.
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Lily - I agree with DeeDee - the large font is perfect!! Glad the fluids are helping. I remember my Taxotere experience and some days a vanilla shake was the easiest way for me to get some nutrition... I so love your Onc - he's phenomenal! I am also enjoying the Olympics.
Penny - glad you had an awesome adventure. You truly deserved it.
Hi to all - can't believe August is upon us!0 -
So glad you are getting your treatment! I am glad your MO is on your side and really looks out for you. I hope you get through it ok. Still saying prayers for you and sending hugs!
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Lily, I am so happy to hear you will be getting txs. I also can't believe you can value life in monetary terms. I'm glad your onc agrees. I am keeping up the prayers and have a good feeling that your next scan will be good. Lots of hugs to you.
Penny, your adventures amaze me. I love hearing about them.
Kristy, I am so. Jealous! Have fun in Germany.
Silia, glad to hear you're doing well since surgery. I am getting my nipple reconstruction surgery next Tuesday. I am close to being finished. Woo Hoo!
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Thats BRILLIANT Lily - think we all owe your Onc a big hug.
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lil,
hang in there....thinking of you....
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Hi girls, I'm back from Germany. I kept up on posts but had limited Internet access, which was probably a good thing. I needed to "unplug" and enjoy our time there with our host family. We had a great time and now I am in jet lag mode, trying to stay on a reasonable sleep schedule and get stuff unpacked, laundered and put away. Have downloaded my pictures (all 741 of them-ack) but need to sort and label and remember where in the heck they were taken. Maybe in a few days I can attempt to post one or two.
School starts for me next week with orientation for new students (1 day) and then officially on the 13th. I shouldn't complain, but just hate the thought of going back already. Seems like it gets harder every year. Am trying to convince my husband that I want to retire in 3 years. He's not convinced, especially since I carry the health insurance and that is something that is obviously a critical benefit/necessity of my job. And, I think I would still work, just not school counseling anymore. I don't know! I think I could find another job with benefits and I would not leave without having a plan in place. I just feel the stress of the job and the stress of my health history (I still have a hard time saying the C word!) is not something I want to be dealing with for another 10-15 years. We are able to attend a retirement planning seminar held each year and I told him we should go and just see what they say and what it would mean in terms of pay-out, etc. I'll be 52 in Sept and eligible for retirement benefits of some sort at 55.
Lily, glad yoiu continue to post frequently. Hate hearing how harsh the first treatment was but glad that fluids help so much. At least that is an easy remedy. I hope that continues to help you stay comfortable.
Penny, I don't know what to say other than you ROCK! I am in awe of your stamina and attitude.
Wishing you all a cool and stress-free day!
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lily- I am so glad you are feeling so much better. What a relief. And you are right, don't bother worrying about bills now, that stuff always works itself out.
fluff- I hope you get some peace of mind after the PET scan. You have certainly fought hard for it!
Kristy- I am so glad you had a great time in Germany! A good break before you get back to school. I struggle with the same issues on work. My job is fairly stressful, but I bring in the money and the insurance. Hard to get out from under that. I would love to retire, but that is far in the future (hoping I get there).
Penny- You are the woman I always hoped I was underneath! Your trip sounds incredible; I'm sure it was a real milestone for you in feeling back to yourself and strong. I'm still not sure I am as adventurous, but I continue to imagine I am.
Deedee-it's good to hear from you!
I have been staying up too late every night watching the olympics! Me, my DH, and our 2 daughters each selected a country to support in a friendly competition for who would get the most medals (no one was allowed to pick the USA). So, Penny, I am rooting for Australia! Hope to see some more medals racked up.
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Lily-So happy to hear you are getting more treatments!!! Yay!!!
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husker - so glad you had a great time. Good luck with the laundry - ha.
Kay - very psyched that your nipple recon is next week - yippee!
lilylady - How's your hair holding up? I've been frustrated that my top is still thin (still wear a hat) but realizing that you're going Round 2 with the hairloss, I'm just looking in the mirror and appreciating the hairs I do have! How is your appetite?
Maxine - I've also been enjoying the Olympics but staying up later than I should. Looking forward to women's gymnastics tonight.
I'm putting Lady Gaga's Edge of Glory on the jukebox. It's in honor of all the Olympians in London right now AND in honor of all of us (who've been through our own Olympic challenges!) Happy August to all.
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DeeDee....he finally capitulated after his office manager told him he should ok it, because she was worried I was going to "think and worry" myself into a recurrence.
Lily....so glad fluids helped. I had a kidney stone attack during chemo. Unsure of which doc to go to, since I wasn't positive it was just a kiney stone, I showed unannounced at the my oncs office. I made it through the ct scan he ordered in the hospital, and when I got back to his office, he took one look at me, made a nurse hold her arm around me, get me into a chair and start fluids and painkillers. I pulled my shirt down exposing half my top and did not care who was looking or what they saw. They opened the fluid full force and literally within 15 minutes, I was feeling so much better. I am sure the drugs helped too. Lol. Maybe ask them to run a little Valium or morphine in there next time!0 -
I've been thinking of all you girls...keeping you in my prayers....especially you, lilylady. I'm gonna put a couple songs on the jukebox, starting with:
"Everybody Hurts" by R.E.M.
here's a youtube link if you want to hear the song:
R.E.M. - Everybody Hurts (Video) - YouTube
and some of the lyrics:
When the day is long and the night
The night is yours alone
When you're sure you've had enough of this life, well hang on
Don't let yourself go
Everybody cries and everybody hurts sometimes
Sometimes everything is wrong
Now it's time to sing along
When your day is night alone (hold on, hold on)
If you feel like letting go (hold on)
When you think you've had too much of this life, well hang on
Everybody hurts
You are not aloneHold on, hold on, hold on
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Okay, and one more song, by Chicago, who my husband and I saw in concert last night. I heard this song and it made me think of you all:
Feeling Stronger Everyday
Chicago - Feeling Stronger Every Day - YouTube
Feelin' stronger every day, feelin' stronger every day.
Feelin' stronger every day (you know I'm alright now),
feelin' stronger every day (you know I'm alright now)…0 -
Great songs, Divine!! Love them both. The REM song reminds me of Nightswimming from that same CD. That song is perfect for summer - so ethereal! I think I'll play that CD today... Wishing all a nice weekend!
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Excellent choices! Need to download to iTunes
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Just got out of the hopspital after a 3 day stay. Couldn't beat the nightly fevers and BP issues. Lots of tests that showed nothing so 3 straight days of fluid and antibiotics and they sent me home today. This 11 days after my tx-WTF??? Perjeta supposed to have few of any SEs and never had anything like this with Taxotere last summer.
All an elaborate ruse to watch Olympics-I wish. Doctor who dismissed me made me sign a paper agreeing not to take any more chemo drugs until I see my doctor first??/ Again-WTF?? Did she think I bought the crap on the street? I am down 13 lbs in 11 days so a little weak but finally feel like I am going to get it. I have about a week to get sturdy before the next tx.
Divine-I bet that was a great concert-cracks me up my niece sent me a couple of song from them and acted like she had discovered them. I have all their albums still.
Kay-good luck next week on the surgery. Hope your suts are what you hoped for
Silia-still have all my hair. remember that sore head thing we got before it fell out-since I wallowed in a hospital bed for 3 days I kept thinking-"Is this it?". I lasted 17 days last time but this was a triple dose. Only 89% lose theirs-maybe.....
Maxine-what you said about Penny is exactly what I have always thought. Bold and adventuresome and fearless. WE all have som of that-look what we came through-intact and strong mentally --most of the time. Ha
Girding my loins gals-wearing my lucky big girl panties and all that crap. eating extra lemons and asparagus and wearing copper and magnets, repeating my mantra of sunny beaches and butterflies. Will stay on touch. Gkad to see so many psting. I have missed checking on everyone.
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Maxine - whoops I think we are letting you down in the medal stakes - too many silvers but not the usual gold in swimming - I think it will do us good actually, Aussies have a tendency to get a bit full of themselves when they win too much.
Divine - always loved the R.E.M song and very jealous of the Chicago concert we don't get alot of bands visiting Perth , even if they come to Oz they tend to stay on the East coast.
Lily - your strength is inspiring, hold on to the thought that - if Perjeta is doing this to the rest of you, it should be kicking the **** out of the cancer cells.
After your last post I had this bizarre image of us sneaking around back alleys buying chemo on the streets - what a weird comment for your doctor to make!
Quoting the song my brother wrote "They say that love conquers all, and if its love that we need, There's no shortage at all" we are all sending you lots of love.Its funny ladies - I was always the wimp that was scared of everything its really odd to read your comments about me. I think its just that compared to what we have all been through, and have to face mentally every day from now on, everything else pales into insignficance.
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New avatar is the 51st (last) well on the Canning stock route - wearing the F*ck Cancer hat
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