Starting Chemo May 2008
Comments
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How about we go to a nice mountain that has the gorgeous big snowflakes falling. We can all sit by a huge roaring fireplace and be drinking hotchocolate with a little extra sumthin sumthin in it <winkie winkie> and we can just relax.
Can you tell its hotter than heck here and I am yearning for cooler weather?
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Eddie & Jen - WOOHOOHOOHOO!!! You go girls! Last CHEMOOOOOOO! Cris - you are getting closer! I hope tomorrow is uneventful for you all followed by minimal SE's.
Eddie - I had forgotten about the Seattle group until yesterday. I saw the name Dottie and wondered...hmmm, could it be Eddie's Dottie? nah. I think I'll need to catch up on that group..it seems to have grown. Dottie is from my old neck of the woods...I lived there until 3 years ago. Sometimes I really miss it over there.
I went to a Crochet 101 class tonight. I hope to learn enough to allow me to crochet chemo caps that I can donate to my Onc's office. Wish me luck...I'm so creatively challenged.
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Hey Eddie and Sable - I am totally with you on the snow, hot chocolate, etc. I think I am either have HFS or the beginning of some neuropathy. (Someone tell me again how we know the difference between those two??) My feet are quite unhappy - can we say burning!! So snow sounds lovely. Owowowowow.
Jean - So sorry to hear about your mom. Prayers will be said.
Noelle - You have been through it, girl. And I like the "luxury of notice" - we had that with my dad and I was able to go home and spend 2 weeks with him before he died about 2 weeks later. Leaving him that last time was one of the hardest things I have ever done. Still makes me cry and it's been over 10 years.
Gracie - I hope the red blood cells do their job. Mine were better than the WBCs last time, but I'm still eating red meat 4-5 times a week. I can't think about my cholesterol yet.
O.K., dh called from work before I could finish this, and while I was talking to him I decided to put something from the freezer on the feet (which are looking very red, btw) and it felt good while it was on and now not so much. Oh, Rock and Otter and Karin, I am feeling your pain!!!
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Morning y'all. My morning routine has taken a turn for the confusing. My DS has decided to walk to school by himself( mostly walks with neighbours though) so I get an extra 30 or so minutes to myself in the morning.
Today I am planning our last fall festival. I get to spend the morning yelling at the customs dept at fed ex and updating my mailing list after almost a year of ignoring it. Yuck!
I had yet another nurse tell me that my nails falling off are likely from the A/C Since the new growth seems healthy the damaged tissue is months old. My big toenails are very very painful after the race, and I am scared to take the polish off them.
I am off to start yelling at people, but in my head I am getting on my wetsuit to wait for Sable and Eddie to get their asses across the river. Otter is in the water already I bet.
Have a lovely day m'ladies!
xoN
P.S Cris, your feet sound like HFS to me... but the other ladies will know betta
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Noelle~ my "ass" is doing its stretching right now.... got my swimmies on, googles, flippers I'm ready!!!!!!!!!!! woooohooooo! bring it on!
cris~ I had the bad pain for a few days in my feet each time. My hands hurt worse though.... the left one was the bitch. After I started taking the b6 it helped tremendously. I added in b12 this week as well. If I miss a few days I can feel it in my feet and hands so it has to work somewhere.
Eddie~ I'm waiting to hold your hand sweetie let's go before they finish off the lemon squares!
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Sable
Let's swim. Let's ski. Let's snowboard. Let's fly. Love you. Noelle and Otter, thanks for the escort and to those of you on the other side, can't wait to see you. Cris, come on in and test the water. We will all be there for you when you swim across.
Can't WAIT to check in later.
Jean, thinking of Ruby today. Adrienne, perhaps we will meet in person sometime soon. Will I have enough nerve to get my pole dance photo taken? Stay tuned. -
Eddie,
You will have enough nerve (shades of the scarecrow singing about the Lion having "the noive")..you are brave and strong and I can't wait to see you over here on this side of the river. And YIPPEE for last chemo!!
Noelle, I also did a lot of my Mom's palliative care. She died December of 2002 of lung cancer. She actually died of dehydration, I believe. Once she was unable to get out of bed, she stopped eating and drinking--I believe she decided to go ahead and die so it would be quicker and more painless. that was very hard for me to admit for a long time, but it was her choice. She wanted to die at home, her way, and she got to do that. Of course it was very hard, but the "luxury of notice" was a wonderful thing, you are right. It taught me to tell people how I feel about them.
Rock, I saw my onc today too. I am considering having my ovaries out as well, even though I am BRCA negative. If I am in menopause (from the Tamoxifen) do I really need them? Anyway, I don't start the Tamox until after rads. I am sunburn-y already after only two tx....Not good. I guess very fair, sensitive skin and rads are not a good mix.
Sable, WOOHOOO back at you for your last chemo!
Cris, sorry about your feet! Elevation, and Ice (or frozen veggies) work really well...just tell yourself that chemo is wanting to kick you a$$ while it can. because once this is over, it will NEVER have the opportunity again!
Love all you guys. Off to WalMart to try to find 100% aloe vera gel.....
Love,
Sue
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man is everyone quiet today or what?
I had 4 BC/ cancer/chemo people in my world today. A new employee at the food shop across the street from my store pointed at my head and said "chemo?" and told me that she had BC and chemo and recon.... in .. well she could not remember what year.. it was a kind of funny. Then I had a woman in a wig ( yes, sadly I can almost always tell which I why I don't wear one) come in about some skincare stuff that I market for chemo-ed out skin ( which is still stuck at f*$&/@ing customs) but we had a good chat and I sent her to this site because her support group ended..?! Then I had another person with a type of lymphoma who has seen me on TV, and after she paid for her soap she gave me a BC t-shirt that she said "I bought this for myself, but will never wear it- so i thought you should have it" Theeeeen I had another woman who had curly hair from chemo, but insisted on arguing with me about her hair for about 20 minutes (I am a pain in the ass about curly hair when people argue with me, I warn them from the beginning of the demo/sales pitch and I always win every argument they throw at me)
It was an interesting day.
I think I won the fight with fedex and will have my shipment tomorrow.
I never got to the mailing list.
I was thinkin' about you 3 chemo ladies all day, I hope things went well.
More later after I eat.
xoN
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Eddie? Sable/Jen? I hear splashing... The water's warm, isn't it?
Cristine, try frozen peas--the big, value-sized package
Hi to all!
otter
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Who has my towel and lemon squares???????? WOOOHOOOOOO! I'm here I'm here Praise God oh Mighty I am here! Had to get 2 sticks this time and a thing of "drain-o" as the doc called it cause they couldn't get any blood return. It finally worked and it was smooth sailing from then on out. I am cleared for my celebratory drink next wednesday and after 2 weeks I can hit the salad bars again!!!!!! YAY! Been waiting for a salad bar for 5 months now since they told me no. Stay away from soy products like tofu and soy milk, chinese in moderation (which we do anyway... we are mexican people) And no shots for me with the tamox I am not in that catagory. I do start the tamox and herceptin in 4 weeks, he promised me a break from all of these and I am sooooo grateful. Last tx he said 3-4 weeks and I was gonna bargain my way into 4 weeks and didn't have to. It feels so good to be on this side, knowing that the worst is over. <big grin> Oh and I asked about when I can say I am officially cancer free. He said some docs say as soon as you get the surgery and some wait till you have been out 20 years.... He said if things are clear for 2 years then he considers you cancer free. I can deal with that.
I'm off to mop my kitchen floor before I can't walk in a day or so and I will post my pole dance pic late this evening. Man that water felt awesome! Hurry Cris I have a lemon square saved for you!
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Sable and Eddie -- last day? LAST DAY????!!!! I am so very very very very happy for you! Congratulations! How did this escape me? CHEMOOOOOOOOOOOOOOOO!!!! LAST CHEMOOOOOOOOOOOOOOOOO!!!!!
(Cris -- Feet UP. A LOT. and cold packs. I slept with my feet on pillows and kept this large soft ice pack on them. And I was in my Crocs pretty much every moment that I wasn't barefoot and in bed. Then again, Taxotere just seems a lot harder on the ol' feet and ankles so please don't be hard on yourself if this ain't working. ... I am so sorry. Maybe try to avoid sodium to reduce swelling/pain?)
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I went to my volunteer gig today after a morning on the phone with lots of doctors and other folks. Turns out the medical clearance form (for the internat scholarship) I was sent was the wrong one so consequently, so was the bloodwork I had done yesterday. And there was a mischeduled radiation appointment so I won't start rads until around Sept 22nd (about a week later than I expected). Anyway, I'm not too bent out of shape. I don't know why, but I'm not.
My rads will be prone (face down) because the rad onco prefers to do all of them that way. I'll also do 4 weeks of rads + a couple boosters.
Sorry so rushed. Am meeting a former student for a drink tonight around the corner and need to get ready.
You know what is kind of odd/neat? I think about you women on and off all day, in ways specific and general. As I try to find the balance between thinking about cancer and not thinking about cancer, it helps a great deal to know you are there with me, going through this, some of you where I am, some ahead, some following, looking for examples as I am. I'm very grateful for that.
Hot flash has made that more incoherent than I intended it to be. (Is it just me or are they getting longer and more frequent?!)
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Yay Jen! Here's your towel!
The Campfire is over here! S'mores? No? oh that's right you are a lemon girl today.
Eddie, get your ass out of the water!!!!
Cris? How was your deal today?
Chemooooooo!
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Just wanted you to know I'm still here. In a depressed mood (kids and germy hugs didn't do the trick). There is a lot going on in my own little world. A lot going on here too, don't know what to say. Cristine are you taking a B-Complex? You should. Jean added your mom to my prayer list. Sue already burning after only 2? I've got 10 behind me and only a bit sore and it seems to be flaring my arm pain, numbness whatever you want to call it.
Too much going on here, don't have time to read all I've missed so here is (((HUGS))) to all. Oink, maybe you can pick up were I've left off. Just burned out.
Enjoy the day, Karin
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Karin, I'm recalling that there were others among us who went through a period of the blues (or the blah's, maybe) a few weeks after chemo. I did for sure, and I see a few other hands raised out there in the audience. Partly it's because we want so badly to feel better sooner, but most of us have only moved on to another phase, like rads or Tamoxifen/AI. It's not over, yet...
The post-chemo blues do go away. Maybe you have some other things going on in your life too, though?
otter
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Oh, Karin. RATS. If kids and germy hugs don't work . . . Why do I feel that "there is a lot going on" might be an understatement? And you have been feeling more than average blue for quite awhile. That's not good. And how are you sleeping?
Okay, don't tell anybody but . . . I was given a prescription for Atavan a million years ago when i started chemo. I never took any of it. Because I hate drugs. I haven't slept well in months but that was okay because, well, it just was. However, when my little sister came into town, I didn't want to be operating on 3-4 hours of sleep a night. So the night before she came, I took an Ativan. And I slept through the night and woke rested for the first time in months. Then we went on our road trip and I took one every night because, again, I did not want to ruin our trip by me being sleep-deprived and grouchy. Anyway, I have not taken the drug since I got back. Consequently, I have not slept very well.
I'm not sure what to do. I gotta say, I LIKED feeling rested and well, "normal." I don't want to take a pill to make me feel this way.
I say this, Karin, because I don't want you (or any of us) to get used to feeling depressed, sleep-deprived, anxious, etc; I don't want us to make depressed, sleep-deprived, anxious our new normal, especially now that we're done with chemo.
In general, I subscribe to the belief that we NEED a range of emotions, including what I think of as "the less popular dwarves" (i.e., dopy, grumpy, sleepy, anxiety-ridden, sobby). But when it hangs in there for awhile . . .
Karin, I'm concerned about you. Too blue for too long.
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Ok time for broken monitors......
Anyone who wants to add your pic to the thingy I am working on you can email me directly at
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Jen -- YOU FOUND A BOA!!!! And SHAAAAADES. Love it. Love it love it love it!!!!!! (I combed the frigging city for a boa and did not find one that fit the bill. Well, I did, but I was too cheap to shell out the crazy money people wanted for a boa! I LOVE YOUR BOA.)
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Hi gals,
Sorry I've been gone a bit, just a bit bummed out. I met with the radiation oncologist today for the second opinion. Yep, she agreed that I'm in the grey area. She did a complete exam and went through all the pros and cons for hubby and I. She indicated that my path report mentioned microscopic invasion (lymhpnodes) and she wanted to find out if it was less than a mil, 1mm or more. She said they could use this information to better determine the case for rads. She also practiced at Northwestern and has a collegue at Froedtert, both academic institutes and she offered to email them for their concensus. All three have decided I should do rads. The invasion was less than 1mm but they still feel strongly that because I'm only 47, I should do it. They raise my survival rate from 85 tp 90%. Guess it's a no brainer. Just really bummed out. This will change my whole plan for recon, but my life comes first. I'll be looking to all of you for help with the rads. Am I the last to start? Looks like next week I'll be gettig the markers.
And yes, she said it's the expander but the risk of lymphedema will be higher after rads.
Congrats to Sable and Eddie, you DID IT!!!
Jean, you and your family are in my prayers....thinking of you.
Mary
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SABLE!!!!!!! Great shot, looks like you had a pretty good last time. Cheers! I'll send you my pic to your email address. Thanks.
Karin, it's okay to be depressed, cuz I'm there too right now. We can do this though. I tell myself everyday that I love my life and those around me, you're one of those special people. Lean on us.
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Mary -- I also had micromets to nodes. My tumor was 1.8 mm, I had a lumpectomy, and I'm BRCA2+. I'm doing rads but then again, we're kind of apples and oranges.
Was supposed to undergo simulation on 9/12 (I keep trying to call it "stimulation") but scheduling mistake means I won't have simulation until 9/18.
85 to 90%? That's not necessarily a no-brainer. Hmmmm. I support WHATEVER you decide but it does seem like with a masectomy, micromets and al lthose nodes removed.... rads would not be an obvious decision.
Do you think you might want another week or two to think about all this? Or get a second opinion from a completely independent 2nd rad onco? (Or maybe you did that already.) Just a thought.
I finished Aug 13th. Won't start rads any earlier than the 22nd. Was told starting between 4-6 weeks is about standard.
I'm sorry, Mary. I'm so tired of hearing "erring on the side of caution" I can't even tell you. I get the feeling that oncos are barred by law from ever saying "You're in the grey area and if it were me, I'd take the less aggressive route..."
xo
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She said I had a couple of weeks to think about it. And, she was my second opinion. I just want to try to make the best informed decision possible and I hate to have to do it...I've read so many articles and studies weighing the pro's and con and it pains me so. She did admit that she would hate to have to make a decision like this.
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Jean, I'm thinking of your mother and your entire family, and wishing for peace for all of you.
Karin, I'm sorry that your blues have lasted so long. And a bit worried. Are there people around that you can talk to? Do you feel like you have a support system? (Why do I suspect that you're more typically the support for others?)
Jen and Eddie: CONGRATS!! I love your pole dance picture, Jen, and can't wait to see yours, Eddie.
Two weeks since my last Taxotere, I'm feeling good, and sporting a head of baby-cockatiel fluff that gets darker by the day . . . but no eyebrow regrowth to speak of. Darn. I'm kind of used to being bald, and it certainly simplifies my morning routine. I'm not used to being eyebrowless, and drawing the damn things in (why am I comfortable going bare-headed but not bare-browed?) takes an inordinate amount of time that could otherwise be spent sipping coffee, running, catching up on bc.org, or even getting to work early.
Linda
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Can anyone tell me how to post my photo from a mac?
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Linda, I yanked my last few eyebrows about 2 weeks after chemo ended and lived with it.
The Borage oil and Brewers Yeast tabs seem to be working on rapid regrowth.
Karin and Mary- I wish I had wise words for you. Mary, you have a tough decision and we are here with you no matter what you choose. Karin, sounds like you have other things going on other than BC issues. Am I wrong? We're here for whatever you need, no reason for you to go back and read. I have told you all that I had a rough emotional ride for a few weeks after chemo ended, can't really explain it, but I had a shovel on my shoulder for most of it.
Eddie, you should be able to use the photobucket rules on a Mac the same way as PC users do. Once it is online it should be fine. Worst case scenario,you email or FB it to me and I can post it. Glad you are here.
Chemooooo!
N
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Congratulations Jen & Eddie! Jen--love the pic. I am halfway there-I think that I'll be the last one done with chemo (except those getting herceptin). Told DH that I'll have to do my pole dance in an elf suit! I won't be swimming across to meet up with all of you, I'll be ice skating!
Karin--I'm thinking about you. I'm kinda like Rock there--I think about all of you every day. You are all a part of me now! I amy not always post much, but I am here, everyday, several times a day, just checking up on everyone. One thing that I would like to say is that I really admire those of you who have children at home and those who have worked through all of this. I miss working (never thought I'd say that!) and it will probably be the first of the year before I get to go back. And just being with the grandkids for short periods of time really wears me out! So, my hat is off to all of you!
Transfusion went well today-didn't think it was ever going to get through--got at the hospital at 12:30pm and left at 8pm. I've administered blood a lot and knew how long it would take, but it really is different when you are on the patient side. I don't like being the patient!
Sleep well, my sisters!
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trying a pic upload of the race
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rock~ found my boa at "flower factory" its a craft warehouse here in town.. only cost me $3!
Eddie~ sent you back an email... let me know if that works for you.
I also, kept all of you ladies with me at all times. You all are like my little guardian angels and I pull from your strength. I never thought a support group would do anything for me, but each of you have proved me wrong many many times!
Oh funny story from today. I have 2 off the wall nurses. After they got me stabbed the one takes the end of my hose and drops it down my bra for me to walk around. Ok that part was funny, we joke about it and I move on..... I see the doc and head back to the infusion room and my other nurse promptly pulls out the front of my shirt and reaches down my bra to fetch the tubing.Mind you I am in the middle of a room that has about 20 people in it at the time. I just started laughing and accused her of hitting on me and checking out my 1/2 cleavage. 5 months ago I would have been mortified but after showing my chest to everyone in dayton I kinda got used to it. It gave me a good giggle for the day.
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Noelle~ make sure the pic you are uploading to photobucket is on the small size..... darn thing is very picky. then there are days its just cranky and you have to fight with it.
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