Starting Chemo April 2009
Comments
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Hi all,
Amy...your workout/diet sounds like boot camp. I know I need to buck up...but I think with all that's been going on it will just have to wait a few weeks.
Lena- I think our move it date is Sept. 20th but before then we have to move out of our dining room and entry because they are refinishing our floors. So just one more move out, then we get to move back in. I can totally relate to your packing comments, you happen to be moving much farther than I am but more than one half of our house is in boxes right now scattered all over. I just seem to be moving from room to room. Anyhow...it will all be over soon and the countertops look gorgeous. I'm really looking forward to cooking in my own kitchen again.
I went to PT yesterday. My therapist said yes my breast is swollen again and wants me to see the surgeon. I just can't mentally do it right now. I have an appointment scheduled for Oct. and think that's good enough. I will not go back on antibiotic again as they just messed with my digestive tract. If it flares too much I will call. I'm trying to be good, doing my lymph massage 2x a day and wearing my Jovi at night. I even wore my mini jovi today under my work clothes. I will continue to be good (no salt and exercise daily), if in a week it doesn't improve I'll call. I'm just sick of this...and frustrated that this may just be how it is for the rest of my life. Sorry, I guess I'm feeling a little bitchy tonight.
Titan - you are right, last year at this time we getting our tattoos and nervous about rads. I'm not sure I would have done rads if I would have known the SE's. Of course, I guess I just pulled the short straw because it sounds like most everyone else has not had any lasting SE's.
Geri - Congrats on being deported!
Pam - Welcome back. I think cancer has reshaped all of our lives. Clearer priorities, cherishing our families, happy to be somewhat healthy again. It has also reshaped our bodies, not necessarily for the better. It is a process and we are still living it day in and day out. Those around us think it's over and done...time to move on. Well it's not that easy when every two months there is another dr. appt or more lab work, aches and pains from the drugs we are on, or SE's from tx. I think it's natural that there is a disconnect between those who have experienced cancer and those that have not.
Well it's late and I need my beauty sleep. Sending Geri and Alaina healing thoughts.
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Geri - so good to hear that you have been deported - I hope you are feeling better today and that the long weekend holds lots of fun for you! You know, when I had my port removed, the doc asked if I wanted to keep it. He said he has had patients who wear them on neck chains or bracelets! I said that I never wanted to see it again, but thanks anyway : )
Helen - it must be hard for you to have all the reminders around you in addition to your own experience of BC, but I am sure that you will be a great support to these women. You are living proof that you can come through it, not once, but twice and in my eyes, that makes you a hero! I also worry if I feel anything unusual, but I try to give it a few days to see if it goes away on its' own. I will be thinking of you on Tuesday and I hope it all goes well.
Betsy - the kitchen sounds fab! I am sorry that you are still swollen, but can completely understand why you are not running to the surgeon. I hope it eases up soon.
Alaina - I hope you are doing ok.
Titan and Amy - sending you both hugs as always.
I had my annual at the OBGYN today. She said that I need to start a drug for my osteoperosis. I will take it weekly, I am not sure of the name. She wants to wait until after my next DEXA scan before I start taking it. She said it may affect my GI Tract! Can you believe it? She said one prilosec the day before and one after should do it. I feel too young to be dealing with bone loss. Still, I keep on trying to remind myself that I am on the other side of BC and I am thankful for that.
Hugs to you all, Judy x
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Just quickly passing by before I go to sleep. The feeling (not quite pain) in my hip continues. It is not consistent but I feel it frequently during the day. I know I have a degenerating disc in my back but this doesn't feel the way that did when I was having trouble. It started on Saturday following an hour workout on the treadmill. I had been getting on the treadmill for a few days in a row. Mostly I have been walking outside with less impact so I'm wondering if that is what caused this. I have to admit I am getting very concerned.
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Helen - I had really bad hip pain a few months ago - onc sent me to a rheumatologist who did an x-ray - osteoarthritis and hip bursitis. Put me on Celebrex for a week or two, and it went away. Will wish the same for you.
Geri
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Hi Helen, are you going to talk to your Onc about this on Tuesday? The Onc may suggest an Xray just to reassure you. I hope that it is nothing more than a sports or joint issue. Thinking of you! Please let us know how it goes and what you decide to do.
Alaina - hope you are recuperating well!
Wishing everyone a fun Holiday weekend!
Hugs to you all, Judy x
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I'm so wrecked....even though I have air conditioners in my apartment, I'm wrecked from organizing and packing with the summer heat wave and the aromatase inhibitor hot flashes. And (I guess this is good) -- it's getting harder and harder to find stuff to pack. I know the kitchen will keep me busy for a couple days because I have to Purge it too, though. Start date on that will be in the next couple days -- when this horrid heat and humidity GET GONE, as Unisys Weather says it will. So, hmmmm, that's 16 more packed and ready boxes since I got home from my Pack Rat's nest...plus a couple others I started but haven't numbered or sealed up yet cause I'm still using some of the stuff that needs to go in there.
I am so ready to pass out now, though.....
Alaina -- are you around? How are you feeling>
Betsy -- Good to hear your home remodeling is going well. Not so good to hear about the swollen boob. :-(
Geri -- Excellent on your deportation (hehehe). It didn't take me long to recover from getting mine put in, so I don't expect healing after it's removed would be THAT bad....(gosh, do ya think if I tell them what planet I'm REALLY from, they'll deport me as an illegal ailen? ;-))
Helen, how's the hip feeling. I don't wanna scare you so I won't mention anything specific about when I was having hip pain. Hopefully Geri's right and you'll find out yours is "just" arthritis and/or bursitis too. About those women looking to you for support -- dunno how well I could do anything like that...I'd probably get overwhelmed and maybe depressed again!
Titan -- I'd sure love to drop several dress sizes like that in a couple months! LOL. Yup, I'm still losing weight (12 pounds down now, 18 to go), but I do wish it was happening a little faster is all. Yesterday I tried on a pair of last year's jeans which I had gained too much weight to wear this year. They ALMOST fit me! I can get INTO them, but not zip/button 'em up yet. Maybe in a few more weeks I can wear 'em again.
Judy -- did the doctor tell you what med she wanted to give you for osteoporosis? Just curious....
OK sisters, have fun and feel GOOD! :-)
~Lena.
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Hi Lena, the meds are called Alendronate. Have you heard of them?
Have a good weekend and try and rest a little.
Titan - how are you doing? Would love to hear from you.
Take it easy everyone.
Hugs to you all, Judy x
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No Lena, the "deportation" is not a bad recovery at all. A little sore, but hey, with what we've been through, this is nothing! Hope your packing goes a little easier this weekend - you're not far from me in New Jersey, right? I think we're going into the 70's over the weekend - can't wait...maybe energy will come with lower temps!
Happy holiday weekend everyone!
Geri
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JHi Everyone! Lena it sounds like you may have a little of the Pack Rat syndrome in you also! I too am a pack rat..I can't bear to throw anything away!
Got the results from my bone density..a little ostepena in my spine..but that was there b-4 so I just have to continue with calcium and d3 which I'm doing anyway....
My real estate on line class is done! Now we are moving the son to school on Sunday. I hope I don't cry the entire time like I did last year..but last year my son said I was an emotional wreck and I would have to agree with him...I really enjoyed this summer with my kids except for the awful heat!
Judy..how long to do you have to take the drugs?
Geri..gotta love your boyfriend! The people who love us do some strange things sometime don't they?
Helen..I bet that hip pain is muscular from working out...Sometimes when I have aches and pains I try to remember that I am 50!
Hugs to my favorite Duck!
Good to hear from you sexy!..I mean YOU Alaina!
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Judy... OK, alendronate/Fosamax...a biphosphonate (Zometa, which is often given for bone mets, is also a biphosphonate). Nope, I didn't know the name "alendronate" until you mentioned it, but Fosamax and the biphosphonate class of drugs, definitely. Thanks for indulging my curiosity.
Geri... I don't recall exactly where Orange County is but I THINK it borders northwest NJ. I'm in the northern central part of the Garbage State. (LOL) And yes, the hideous hot and humid weather broke today (it is GORGEOUS out, like perfect playing-sims-in-the-park weather). I started the kitchen Purge, but then I had to go to the eye doctor too, so I have the best possible eyesight while I'm learning how to get around in a new area. Going to go back to extended wear contact lenses this time. :-) Yeah, well if importation was an easy enough recovery (it was for me), then it stands to reason that deportation would be even better. I hope I get to find that out for myself! :::::sigh:::::
Titan...yup, I guess I'm a Pack Rat too! LOL Maybe THAT's why MY Pack Rat decided to keep me, huh, so he could have a female of his species? LOL. OK...congrats on finishing your online course...I take calcium and Vitamin D too...maybe you were a wreck last year when your son went off to school cause you'd just done CHEMO?
Ah well. Think I'm going to have a nice iced tea and then get to washing the kitchen stuff I pulled that I'm keeping -- like my pitcher with the biohazard symbol on it!!! WooHOO I found it!
~Lena.
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hi ladies...i am 10 days post op and doing fine...each day gets better...hopefully i will get clered to drive next week. more later...alaina
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Alaina - thanks for checking in! I am so pleased to hear that you are doing fine. Keep resting and hope you continue to heal well.
Titan - I think that the doc said that I can take the drugs up to 5 years. I am not going to start until I have the results of the DEXA in Oct, so in the meantime, I am carrying on with Calcium and Vit D. Hope all goes well with your son today!
Lena - I am loving your upbeat postings.
Geri - Isn't this weather gorgeous! The windows are open and the fresh air is wonderful!
Hope you are all enjoying your Holiday weekend.
Hugs, Judy xxx
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Alaina -- it's great to hear you're recovering so quickly.
Judy -- yup the weather's gorgeous. I went out for 2 walks today so far. "Only" packed two boxes today (though I did wash the kitchen stuff I found, did the laundry and Purged the top kitchen cabinets that I had to stand on a chair to get at...but the day isn't over yet.....I'm kinda trying to resist the urge to go play sims in the park......or TRY to anyway. Gorgeous weekends like this are usually too crowded and it's hard to find a picnic table to sit at.
Ironic discovery: since I decided to go back to wearing contact lenses, I dug up some of the old ones I had left (my distance prescription hasn't significantly changed) and put them on. OMG. Since I see so much better with contact lenses than glasses, it made me wonder why I went back to glasses last time I had my eyes examined (2008)...till I looked in the mirror and saw the bags under my eyes. :-{ Well here's the paradox about all this...
I've been blind as a bat since first grade. I wore glasses through my childhood and into being a teenager, but when I was 16, my mother, who had been so unsuccessful in trying to get me into "girlie" things like makeup and clothes she was worrying about me, suggested contact lenses, telling me how pretty I'd look with them. At first I refused saying no way would I be sticking things in my eyes, thank you. Then my father got into the act and told me about the new "soft" contact lenses (gosh now you know I'm an olde pharte!) which wouldn't hurt. Reluctantly I tried them...and found out that not only did I see fifty times better (wow, PERIPHERAL VISION!!) but yes, I DID look a thousand percent prettier (but no, that didn't spur me into getting interested in makeup or clothes, much to my mother's dismay).
So.... from the time I was 16 until my late 20s/early 30s (at which point I started working in labs and contacts weren't allowed for safety reasons and HAD to go back to glasses), I always wore contacts. In my early 40s when I ended my lab career, I wanted to go back to contacts but the extended wear lenses they'd had briefly in the 80s (which I LOVED) were no longer available, and by this time, my left hand was out of commission from the stroke so I stuck with glasses because it was too hard to put on contacts every single day especially in the morning...finally in 2007 extended wear lenses came back, and I got 'em (you only have to change them once a week, and I chose to do it on Friday evenings). But as soon as I got 'em I looked in the mirror expecting to see my pretty face and what do I see? The saggy bags under my eyes, which glasses had pretty much hidden all those years. So in 2008 when it was time for the yearly eye exam, I went back to glasses. When I was in NH with my Pack Rat a couple weeks ago and was having some minor issues seeing while I drove (no accidents, but enough for concern) we talked about it and I said yes I was planning to see the eye doctor before moving (nope, I didn't go to the eye doctor last year). He said since my vision was so much better with contacts, I should get those, so I'm getting them....ironic because it used to be contacts made me look good, but now they don't -- and since they really DO help my vision much more, I get to see precisely how icky I look. Oh well....
But...now when I get hot flashes or look down, my damn glasses won't fall off my face anymore. That was really pissing me off. I'll try to think of how much EASIER it'll be, in addition to being able to see better, whenever I get down on the baggy eyes.
~Lena
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Thank you all for your support and kind words last week. I think you are all so right, this past 1.5 years have been so tough emotionally and physically, and I'm just coming to terms with what it all means to me. I have two eight year olds at home and during my treatment, they were my primary concern: were they okay, how would they get where they needed to be, could I still parent while undergoing chemo, you know how it is. Now that I'm finally feeling better, I am realizing just how awful it really was (for me).
My husband is a wonderful man, but he is selfish and can really see the world through his eyes and only his eyes. I think I'm just trying to figure out how to continue my life with a bit more of a focus on what I want, rather than what my husband wants, what my kids need, what I need to do to support my mother, etc.
Thank you all for your support. I don't really know what the future holds for me, but I want to be sure to enjoy my life while I'm here and not undergoing treatment!
It's lovely to have a place to process this where you all have a clue what I'm going through.
Pam
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Lena - another great post! Thanks. You know, I have terrible eyesight too and wear glasses and contacts. The other day, I was wearing my contacts and my 8 year old son said "why are you wearing brown eye make up all around your eyes?". I realized that it was the black bags from exhaustion that he could see, and I am quite conscious of them, but I still prefer my lenses as they make me look better.
Pam - good to hear from you! We all know what you have been through and are still going through, so you can always come here and talk to us. The ladies on this board are an amazing group - I am so lucky that I found them too.
Hope everyone is having a good day! I am going outside now to enjoy the weather with the family!
Hugs to you all, Judy xxx
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Day 12 Post-Op Update!
Hi Everyone! I could not stand being cooped up a minute more, and my BFF Steph came to get me so I could drive my car back to my Mom's house. I will most likely get cleared to drive tomorrow, so let's just keep this our little secret, ok? LOL!!!Anywhoo...I am making a quick pit-stop at my apartment, to use my computer and check in and update folks...so here goes...
Cathy (my other BFF) and I arrived at Mercy Hospital at 9:30am. By 9:45am I had had my first needle-stick for a test my plastic surgeon needed pre-surgery.
Shortly afterwards, I was called back and prepped for surgery. I was told surgery would start around noon-time, but it turns out my breast surgeon was running behind, so they didn't actually take me back until 1:15pm. Some of you may have seen my drive-by comments on Facebook (I wasn't supposed to have my cell-phone back there, but that's what BFF's are for!)
Dr. Chang came back to "draw on me." I told him the results of my Facebook Survey on CupSize, and he just laughed. He said, well, you have enough tissue/fat to give you Full B's or Small C's depending on which way you look at them. Fair enough, so that's what I have, Full-B's/Small-C's. And they are LOVELY!
Ok, so they take me back. My breast surgeon first does a skin-sparing prophylactic mastectomy on my right breast. This took about 2 hours. Then Dr. Chang came in to do my reconstruction. It only took 6 hours!!! He said the blood vessels they needed to locate were just sitting there saying, "HELLO, HERE WE ARE!" so the normal hour or two they take to search for and find the right vessels, they didn't need to do with me. 3 hours on each side and we were DONE! PRAISE GOD! Nothing but the grace of God and ALL your collective prayers! I was under general anesthesia for only 8 hours! Even the doctors were estimating 10 hours at a minimum, so I consider this a HUGE blessing!
I wish I could say the rest of that day went as smoothly. I woke up, and the first words out of my mouth were "I'm scared!" And then I kept asking if I was breathing. Cathy asked the recovery nurses why I was so agitated (more than normal when coming out of anesthesia), and they said that it's a common side effect of this new general anesthetic they are using. Apparently, the anesthetic they USED to use regularly, Propofol, is in short supply (post-Michael Jackson I suppose), and they are now using this other drug (whose name I have yet to get...) Well, apparently nearly EVERY patient who gets this drug wakes up verbalizing fear and having varying levels of panic and anxiety as it wears off.
I had panic and anxiety attacks all night long! It was MISERABLE! Intellectually, I knew I had nothing to be afraid of, but I could not shake the feeling that if I closed my eyes and fell asleep, I would die. The nurse sat with me for 3 hours, God Bless Her. Finally I agreed to have them give me something to MAKE me sleep.
The next day, they moved me to a private room and the nurses got me sitting up in a chair within a few hours. I had on-demand Dilaudid via IV, could take Percocet whenever I wanted, and had the On-Q Pain Pump continuously bathing my abdomen in Marcane. But sitting upright for the 1st time was the most pain I'd ever felt in my LIFE! OMG!!! I could hardly believe it!
I slept in the chair for 3 hours, and the nurses finally took pity on me and put me back in bed. But then the dopplers for my new breast flaps went wacky. Get this, I had electronic doppler-monitor-thingees attached to the new girls, and my plastic surgeon has an I-Phone App that lets him check the blood flow into my new breasts 24 hours a day from wherever he is! There truly is an APP for EVERYTHING! I told him he had a Boob-Alert!
So apparently, the dopplers aren't happy when you move around, so my flaps really weren't failing. Dr. Chang said to remove the dopplers if the nurses were going to keep me moving around.
On Friday, I started on solid foods (somewhat reluctantly), and they stopped the Dilaudid (which was making me itch something terrible!) They also insisted I sit up in the chair again. I was in that chair 20 minutes before everything started going dotty and purpley. Basically, I passed out. My blood pressure plummeted to like 60/44! Back to bed, and they started pumping over 1000 mL of saline to bring my p[ressure back up. That worked! Essentially, they sat me up too quickly after taking me off the Gold-Star narcotics, and I was a bit dehydrated, so...*swoon*
I peed 12 times in 60 minutes! At some point, I stopped calling for the Nurse Tech and just got out of bed on my own. That level of moving around and eating solid food was my ticket OUT of the hospital the next day! Whoo-Hoo! All things work together for the good...right?
Painwise, I'm amazed at how much better I feel each day. 12 days post-op, and I haven't had ANY painkillers in over 72 hours! I'm still a bit sore and achey, and still have 2 drains (1 VERY stubborn!), but again, each day gets better and better!
I have to send a huge Shout-Out to Cathy who was there when I woke up (even though I couldn't see her, she kept talking to me and sitting with me, and answering my crazy questions!) She even got a hotel room right across the street from the hospital so she could be there when I needed her. And another Shout-Out to Stephie who kept you all updated, checked on my cat, collected my mail, and basically ensured I did not climb the walls too terribly. I have the BEST best friends in the WORLD!!!
And for each person who made a point of coming to see me while I was in the hospital, while I was looking like the Heat Miser's long-lost black sister, I THANK YOU!!! You have no idea how much those visits meant to me! I truly love and appreciate each of you!
Each phone call, card, visit, prayer, email, they mean so much! And I just thank you all from the bottom of my flat-bellied heart!
I still have some recovery milestones to make, but I'm meeting/exceeding each of them so far! I'm on target!
Anywhoo, I've got to get back to my Mom's before she freaks out too much. She's taking extremely good care of me, and I will be there until the end of the week.
Later!
Alaina "I'm Too Sexy for These Drains!"
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Ha Ha Alaina..you crack me up! Glad things went "smoothly" for you and you are on the road to recovery with your new girls! That's scary about the anethesia though! I wasn't very happy when I woke up from my lump..screaming for my husband and kids..I was bossing everyone around..I think they were glad when I peed and ate so that they could get me out of there...and I love that song.."I'm too sexy for these drains"...(or whatever words you want to insert there).
Lena and Judy..I too am blind as a bat..just got some new glasses..tried them on blind with my daughter to assist me...They are called "Ted Evans"..not sure who he is but I didn't know that his name would be all over the frames..they are even on both nosepieces! Amazing...I wore contacts since I was sixteen..the "hard" ones..then gas permeable for years, now the soft ones...wore them to a girls night out and Lena and Judy..I know exactly what you mean..everything is just OUT THERE....I don't even know myself in contacts anymore.that person looks old..hell..I think I look old in glasses..maybe I am old! I just didn't want to look old but now I think I do.
Glad you are back Pam..I wish we could hear from some of the others that started chemo in April 09..just to see how they are doing...
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Alaina, so glad to hear that you are recovering well. I guess there are scary and painful moments with any surgery but it seems that you are handling things very well. It's wonderful that you have such amazing friends. I hope you continue to get stronger every single day.
Lena, you sound so happy. It's a pleasure to read your posts and to "hear" the joy in your voice.
Hope everyone had a great long weekend. It's back to school tomorrow. Even though I've been back, the day the kids are there is different. It become hectic. I've already had parents complaining about teachers. I also see the onc tomorrow. It's a regular checkup but I still have the ache in my hip althoug I think it's a bit better. I'm nervous. I assume she'll order a scan or x-ray or something.
My friend, who had a mastectomy on Friday, seems to be recovering well. Now she has to wait for the path report so she doesn't know what the tx plan will be yet.
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Alaina - so good to hear from you. I am pleased that for the most part things went smoothly and that you are on the road to recovery. Surgery is scarey and I am as usual in awe of you. I have still not made any decisions about it, I still wear my prosthetics but I am just not sure about surgery, so reading your post was a help to me, I need to continue gathering information before I can make the final decision. I think I am a bit of a coward and am frightened to subject myself to all that pain and discomfort. Keep feeling better!
Titan - I am learning to apply plenty of eye make up to cover up the lovely shade of brown : )
Helen - I hope the appointment goes well at the Onc today - please let us know. And glad your friend seems to be recovering well.
Hugs to all of you and have a good day,
Judy xxx
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Hi Girls, I'ts been a long time since I've posted on here. I've been reading off and on to check up on you all. I'm glad to hear that everyone is doing somewhat OK. I know this past year and a half has been really hard on all of us. Lately, I've been thinking more about the cancer again and have definitely experienced more anxiety. Seems like every time I get my blood drawn before I see my onc, I start to freak out a little. I've been busy all summer with my kids, both in high school now, freshman & sophomore. This morning was a little bitter sweet as I had the house all to myself but actually miss them both a lot. This year our family vacationed in St. Thomas, US Virgin Islands. It was amazing, usually we go to North Carolina but this year we decided to do something completely different as the kids are older now.
LENA - so happy for you getting to be with you PackRat. That's the best medicine.
ALAINA - glad you are recovering so well from your surgeries - I am so happy with my recon. I'm really happy that I went ahead with it.
TITAN - your posts always have cracked me up - love ya;0)
JUDY - As always the glue on this thread!
PAM - just keep putting one foot in front of the other - that's my motto.
HELEN - good to see you!
Good to see you all. HUGS for everyone, DAWN
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Dawn - so great to hear from you and you look terrific - I think everyone has been suffering from some anxiety recently - I know I have, and I just try to cut myself some slack and accept that, as my breast surgeon said, we are all expected to experience some post-traumatic stress syndrome...it's been a difficult process that we've been through.
Alaina - you sound as fiesty as ever. Glad that you are recovering well, but don't make your mama upset by trying to do too much too soon!
Lena - did you get to do any simms in the park over the weekend. I wear glasses all the time - never did contacts, because I only needed help with reading until about two years ago, and then started having difficulty with distance, so I went the glasses route. I actually think I do look better in glasses now - you know, that brown eye-makeup we all wear at this age-Judy your son is so funny, but it's so true...glasses do hide some of our flaws.
Helen - I hope the onc appointment went ok and you got some peace of mind about your hip pain.
Betsy - hope you are feeling better
Titan - See how you make everyone smile...Dawn even stops by for a chuckle from you
Pam - Good thoughts your way.
Judy - You'll know when and if you will do reconstruction...like everything else, it's a personal decision. I know for me it has made life easier, and when I think back to the post-op it wasn't as bad as the original surgery - or maybe it's just more tolerable because it's moving forward.
Hope you all had a great holiday weekend (except I don't think they have Labor Day in Canada, right Helen?).
Geri
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Well I got into a little problem here on BCO today. There was a thread about 'having the courage to NOT do chemo" from this newly diagnosed woman who was HER2+ and wanted to go some natural route. I wrote and said that it was not necessarily courage to ont do chemo if it was based on fear or denial. That it was only courage if you had an alternative that you were truly convinced that would be better for you. I wrote that I had come through chemo and Herceptin well and that the most important thing was to think long-term and that there were many alternative supplemental things you could do along WITH chemo/Herceptin. I also wrote about how a clinical trial onc told me that there were so few recurrances with women taking herceptin that they had trouble finding enough of them to fill the trials anymore. Well....I hadn't realized that it was in the "Alternative" area, and those women are TOUCHY with a capital TOUCHY! I got a PM saying I wrote terrible things as well as other women wrote that we (I and the other women who said it was kind of a big deal to skip chemo/herceptin when you are HER2+) were 'chemo evangelists.' That the onc who told me that was wrong - or lying. Tools of big pharma, etc. Yikes. I didn't respond. But it did bother me. The thought of someone NOT taking herceptin ....after all the stuff other brave women ahead of us went through in trials so that we could have it..... well, I think it is a little crazy. But hey - that's just me, right?
On a happier note - I went to the beach on Sunday. Haven't been to the beach (Delaware beach is about 2 hours away) for years - maybe like TWENTY YEARS, lol! My sister in law and her husband have a 'beach tag' on their truck so they can drive onto the beach in a secluded area that is mainly for fishing. So we drove down & met them and they drove us in their 4-wheel drive truck about a mile onto the beach and parked there. It was very empty - we had a whole stretch to ourselves. They fished (you have to be fishing in order to park there) and we swam and it was SO relaxing and lovely. I really felt renewed. I'm obviously not much of a beach person (as indicated by the fact that I haven't been there, or missed it in so long) but it really seemed healing to me. A really good day. And now I have a little color in my cheeks and a red nose to show for it.
Am going to the Phillies game with my kids tomorrow night. And then to NYC for a few days to see my parents. I find myself much more intentional now - taking charge of my time, making decisions to do things that are meaningful to me, instead of just working and letting life happen and going through the motions week in and week out. That new perspective is ONE good thing to come out of this whole experience. It is the Jewish New Year on Thursday night. They serve apples & honey in the hopes that we will have a 'sweet' year ahead. I hope this next year is sweet to ALL of us!
Amy
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Dawn, so good to hear from you. I agree - Judy is the glue that holds us together.
Geri, we do have Labour Day in Canada ... same day as you ... we just spell it differently.
Amy. please don't worry too much about those folks. They are in a different space and that is their choice.
Saw the onc today and described the ache/pain. She asked me a few questions. Said it didn't sound like anything to worry about. However, if it doesn't go away in a couple of weeks, I'm supposed to call her.
On another note, she said that there is now evidence to prove that Taxotere does caus permanent hair loss so she doesn't think mine will grow back no matter what I do ..... one more thing for me to be upset about .... it's awful not to have my hair back.
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Dawn - so pleased to hear from you! You look fabulous and your vacation sounds like fun! Yes, we are all experiencing some level of anxiety at the moment, but coming here regularly, really helps me and gives me the support and understanding that I need.
Geri - thank you as always for your support. I know that time will help me make my decision, I am just so frightened of being in pain again.
Amy - great to read your post and to hear what you have been up to. The beach sounds wonderful. I wish that I could be more intentional. I find myself stuck in the day to day, going to work, looking after the house, kids etc. I would love to break out and have some fun. But at the moment, it is not happening. I think I need a plan to get moving. It is actually getting me down, I am feeling miserable which I don't like. So you have inspired me to make a change! Thank you.
Helen - I am pleased to hear that the Onc appt went ok, please keep us posted on that pain in your hip. I am also sorry to hear what she said about permanent hair loss. I wish I could do something to help you, but we are here supporting you and I hope that helps a little.
Titan, Lena and Alaina, hope you are all doing ok.
A sweet year ahead sounds good to me!
Hugs to you all, Judy x
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Amy..I read that thread also..saw your comment..you were just fine in what you said!..You were stating your opinion and no way you were out of line. Don't feel too bad about it please?
Ya know..we all did the chemo (duh..we are on the chemo 09 thread)...and I don't hear anyone on here saying that they would NOT have done chemo....I would do it again and do more if they would have offered it to me...
Sometimes I think of the possible se's down the road..but you know what..I would rather LIVE with those SE's than the alternative...I was never give the choice..it was like..here is your chemo regimen..I wasn't on here then..but there is NO way I would have turned it down...being TN..was one reason..another is that my lump was 1.8 cm...though I had clean nodes..anyway..don't drive yourself crazy about one person...that one person obviously has her reasons for her choice..well..so do we.
Dawn..it is GREAT to hear from you...we missed you sweetie! Glad to hear you are doing OK..how's the soccer going? My son is playing club soccer in college this year..now..if I can only get him to give me his schedule!
Helen..man that sucks about your hair..it may be a "small" thing in the entire scheme of things but it is important to we women who have been to hell and back...is there anything that can be done????
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Amy..I read that thread also..saw your comment..you were just fine in what you said!..You were stating your opinion and no way you were out of line. Don't feel too bad about it please?
Ya know..we all did the chemo (duh..we are on the chemo 09 thread)...and I don't hear anyone on here saying that they would NOT have done chemo....I would do it again and do more if they would have offered it to me...
Sometimes I think of the possible se's down the road..but you know what..I would rather LIVE with those SE's than the alternative...I was never give the choice..it was like..here is your chemo regimen..I wasn't on here then..but there is NO way I would have turned it down...being TN..was one reason..another is that my lump was 1.8 cm...though I had clean nodes..anyway..don't drive yourself crazy about one person...that one person obviously has her reasons for her choice..well..so do we.
Dawn..it is GREAT to hear from you...we missed you sweetie! Glad to hear you are doing OK..how's the soccer going? My son is playing club soccer in college this year..now..if I can only get him to give me his schedule!
Helen..man that sucks about your hair..it may be a "small" thing in the entire scheme of things but it is important to we women who have been to hell and back...is there anything that can be done????
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Ok..do I have to talk to myself again??????
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Titan, you can talk to me. I'm exhausted. We have just started our holy days so I had all my kids and grandkids over for lunch - that makes 8 in total. Then this evening they came back along with my sister, BIL, brother, niece & nephew (13 of us) for dinner. I think I'll finish cleaning up in the morning.
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I'm going outta my mind and I'm not sure my Pack Rat's trip here with the pickup truck tomorrow night will calm me down or not. I'll try to come back tomorrow or Sat/Sun if I can.
~Lena.
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OK, I guess before I get started on that monster To-Do list I have for today...
Alaina -- OMG what a story about your breast operation! I've been under general anesthetics on a few rare occasions, but never feeling panicked or anxious. The "worst" such awakening was feeling nauseous (that was when I got spayed). Other than that I felt peaceful and woozy. How are you feeling now? Is your recovery still progressing at this seemingly rapid rate (I hope)?
Titan and Judy, my fellow blind-as-a-bat sisters... yesterday I got my new contacts. Now I knew I had an "industrial strength" prescription -- when I hit 8.5 diopters about 20-25 years ago, the optician's eyes bugged out at the sight of the prescription...but my new prescription as of yesterday has MY eyes bugging out! I'm up to 10.5 diopters! :-O But, OK, if that's what it takes, that's what it takes. The new contacts are wonderful until I sit down at the computer or try to read or write something down (or even look for a small object I misplaced) -- when I do THAT I am immediately reduced to wincing in pain and squinting and grabbing for the +2 drugstore reading glasses I can no longer function without (and ratness help me when I misplace THOSE!). Oh well........ now WHY didn't I let myself die of cancer?! Getting old SUCKS and I could have prevented it!
Helen -- that really SUCKS about your hair. :-( Oh, and I wouldn't call me "happy" just yet. I mean yes, I do feel BETTER than I did before starting the Wellbutrin, but I haven't REALLY been "happy." But maybe, we'll see. Yesterday I had my psychiatrist appointment and this time I remembered to tell him about still feeling "off" and how it felt like the creative part of me was dead forever despite the other improvements. While we were talking about it, he said something and I reacted by bursting into tears. Although I "came out of it" quickly, he said I still did have some depression, and he upped my dosage of the Wellbutrin. So, we'll see what happens. Since you said you were feeling better but not really all that great since you started, what dosage are you on? My first week was 150 mg/day, then he upped it to 300 mg/day, which was what I was taking until yesterday, when he increased it to 450 mg/day. I started the increase when I got home. I had to dig the 150 mg pill bottle out of a box I'd packed so I could take one, but OK, and, I'll fill the prescription before I move -- the pills I excavated are actually enough for awhile, at least until time to refill the 300s. I take the whole dose in the morning. Oh. How was your onc appointment and how is your friend who had the mastectomy?
DAWN!!! You look like a human! ROFLMAO! :-D That sounds like some vacation you had. Glad you all enjoyed it. Oh, and about your recent cancer anxieties: MY motto is "no news is good news." If you're getting regular blood tests and your oncologist hasn't been saying anything's wrong with you, don't sweat it. Same goes for scans if you get them. I know, I'm weird, seeing how so many patients get so worked up while waiting for test results, but I just feel: there is nothing I can do about it and I don't even know if anything really is wrong. And for so long as I don't know, or the oncologist hasn't said anything about "bad findings" in my blood work or scans, that's time I can spend NOT faced with some kind of horrendous decision to make about treatment or worse, GETTING some kind of horrendous treatment with more horrible side effects and so on. I'm to the point where, I just don't even WANT to know anymore. I go to the doctor, let them take blood, let them scan me, listen to what the doctor says, and the only questions I ask (well OK, I stopped asking when he told me there was nothing he could do and he didn't know what caused them) are about side effects I'm actually HAVING (of late, the ones from the damned Aromasin).
Geri -- nope, I haven't had time to play sims in the park. Some days I haven't had time to go for my WALKS in the park, or to play sims at all. I did finally play my sims a little last night. I'm in the close-countdown part of the move and about to lose my mind completely. Like a couple days ago my Pack Rat was telling me on the phone that on his next trip with the pickup truck (tonight) he wants to start taking the "smaller" (non-bed, non-dresser) furniture if possible, which includes the computer desk, the "big" table in the living room, and says everything I still need to use which isn't clothes in the dresser should fit on the coffee table, which means I'm going to have to shut down the computer network (and big 21" flatscreen monitor) TODAY so all I have left is the iBook (and external HD) on the coffee table! So that's why I feel like I'm going to lose my mind. I HAVE TO be here physically through Friday the 24th (last onc appointment is 9/22, then I need to refill prescriptions and close out my bank account). I wasn't expecting to have to pack down the network for about another week to week and a half! Yeah I can still "live" on the iBook but it's much easier physically to sit at the desk or a desklike thing, not to mention typing on a full size keyboard (iBook's keyboard is "too small" and "too light)...oh well..yup I believe I CAN have all this done today, or should I say be READY -- I can update the backups, shut down the computers, discombobulate the network wiring and pack up the wires, KVM, printer ethernet adapter and router, but my Pack Rat's going to have to move the heavy Quicksilver tower off the desk and the heavy laser printer off the top of the file cabinet.
Amy my dear, *I* am sorry I did chemo, remember? I made the mistake of CONSIDERING it when my Pack Rat encouraged me to have my BC treated, and after that was I feel as though I was plain and simple manipulated into it. My oncologist never fucking bothered to tell me that mastectomy wasn't standard of treatment for Stage IV patients. He HAD told me my breast tumor was "too big to be operable unless I had chemotherapy to shrink it" and that I was a Stage IV patient due to my bone met (and mediastinal mets at the time), and it was under THOSE terms I allowed myself to be talked into chemo. After I was fucking wrecked and destroyed from chemo and asking when I'd be having my mastectomy, THAT was when I found out that the only time mastectomies are "standard treatment" for Stage IV patients is when their tumors are breaking out of the skin, leaking and making painful messes. I actually had to ask him at two subsequent appointments after finishing chemo for it to sink in -- combination of shock and chemo brain. Now forgive me if I'M "touchy," but this pisses me the fuck off like you wouldn't believe!!! THIS is how it SHOULD have gone (at the time I was scheduled for but hadn't yet started chemo):
Doctor: We found metastases in your mediastinal lymph nodes and left iliac bone, which means your cancer is Stage IV. Mastectomies are not standard of care for Stage IV patients.
Me: So this means I won't be having a mastectomy, even if I have the chemotherapy and it shrinks my tumor to operable size?
Doctor: That's right, unless your tumor breaks out from the skin. If that happens, I'll order a mastectomy for you.
Me: Okay, thanks. Then I'm not going to have chemotherapy. If you can, please let me know approximately how long I have left to live, what I can expect, and what the palliative options are.
[and we'd have gone on from THIS point.]
But that is NOT how it happened. He didn't fucking BOTHER to tell me until I'd already DONE the fucking chemo! >:-P GRRRRRRRRRR! and I am RUINED for whatever is left of the rest of my life! :-*(
Now, I did read your "problem post" and while I obviously don't agree with all of it, I don't find it offensive (IMO you expressed your opinion both eloquently and tactfully), and, while I would have cancelled my appointment to start chemo if I had been TOLD prior to the start date I wasn't going to be operated on, neither do I agree with those "natural girls" either.
And yes, call my original motive to not do chemo fear, I don't care. Yes, I'm a sissy, and i am not ashamed to admit it. I was AFRAID OF THE SIDE EFFECTS, ESPECIALLY SINCE SO MANY ARE LONG TERM AND/OR PERMANENT. I consider having had chemo TIED FOR FIRST PLACE as the MOST HORRENDOUSLY STUPID THING I EVER DID IN MY LIFE. (tied for #1 with getting married) Someday when I get the time I'm going to start a thread in which I scream how much I HATE that we (BC patients) are called "warriors" who are "bravely fighting a battle" against our disease. Well I ain't no fucking warrior and I am NOT brave!!!!!!!!! I'll probably be lambasted and chased off the forum but so be it.
Glad you enjoyed the beach, though....oh, and happy Jewish New Year (you too Helen; I think I recall you're Jewish too, right?)
OK I know I have to have missed some people and some subjects...sorry...but it's almost 9:30 and if I'm going to get everything I'm supposed to do today, done, I need to get started now.
Enjoy your weekend and I hope you all feel good!
~Lena.
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