August 2010...anyone starting chemo besides me?!
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So not looking forward to my gyn onc appt now! On Tamox, fingers crossed.
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Ok...so I look like I belong on America's Most Wanted in that photo so I am going back to the witch momentarily!
Adey: best of luck tomorrow. You and I have been on tamox for about the same period of time and if you are not "cycling (Armstrong!)" shouldn't we, after 1 year of no cycle, be going to Arimidex? I think we are supposed to go off tamox at some point? In any case, I am not going to the onc today and had to reschedule for Nov 13. I guess I will find out then if I need to switch to Arimidex.
Omaz: I went to visit my brother in FL a few years back and on our way back from the airport he said, regarding the van in front of us, "Liz, look, it is a van full of QTips going to tour the graveyard!!!!!!!" Yes, eventually we all look like QTips but I am fighting it with the $10 box of magic from CVS!!!!!!
Why oh why did I get a new phone **TWO DAYS** before surgery!? Even though I worked in wireless it still takes me time to learn these phones. I must admit, however, this one is a "gaming" phone with Playstation games built-in and I figured if my hospital stay is longer than anticipated, I will have something to do! I am so excited that the return of "Beavis and Butthead" to MTV is happening on the night when I am out of surgery!!!!!! I better be able to get my MTV in that damn hospital or else!
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Back to the witch photo! I don't look half as scary as I did in the non-witch photo!0
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My onc said that if I don't have a period for a year or a year and a half since the end of chemo I could switch to the AI. When I go next in Nov it will be a year just about and I am going to ask about switching. Tam makes me a little nervous with it's estogen effects on some tissues and anti-estrogen on other tissues. At least with the AIs it's all anti-estrogen and if I can't take it I can go back to the tam.
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Omaz: that was my understandiing about Arimidex vs Tamox and I am looking forward to the switch. I am just hoping for no SEs with Arimidex as Tamox has been fine for me....0
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I am a over a year out of having my rad hyst and "technically" am in menopause now. However, my onco wants to keep me on Tamoxifen due to my age and bones. He said that as I wasn't having issues on Tamoxifen--he wouldn't move me to the AI's. I see him again in January so I'll ask again then. I met a few different people on AI's and a couple had a hard time but other people seemed OK. As with all of these pharma...everyone reacts differently.
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I see my med onc tomorrow and my gyn onc on Friday. I'm okay to stay on Tamox for now unless something nasty is happening down yonder. (c: I'm already short enough!
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Thanks guys for your support!
Lizzy and Omaz: They found the uterine thickening on an MRI that they did of my pelvis because of some hip pain I have been having. They first discovered it back in March and the GYN did a pelvic sono to confirm then said to come back in six months and they would check again and see if it was stable. So, I went back for another pelvic sono and it has gotten thicker, hence the endometrial biopsy. If everything comes back okay the GYN said they will just monitor it with pelvic sonos every six months, but if I begin to bleed I will have to have a D&C. Good news is that the onco was talking about switching me to AIs at my next visit, and they do not cause uterine thickening so hopefully this will not continue to be a problem. I am like you though Lizzy, as much as I am looking forward to getting off the Tamox because of the thickening, that really has been my only side effects, and I am a little afraid that I won't be as lucky on the AIs.
Adey: Sorry to scare you, I really didn't mean too.
Debbi
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Hi everyone-
I was trying to catch up reading and I'm freely admitting I had to do a bit of "skimming"....there's a LOT to read if you've been away for awhile.:)
Gingerbrew- nice to hear your "voice" again!
Rachel- good luck with full time, I found it hard too. It's the juggling of everything that the killer. But it does get better with time.
Deb- really sorry to hear about that biopsy nightmare. I had no idea that would be so painful...hope you're over it.
Lizzy- I will be thinking of you on Thursday. You'll be so happy to finally have this done. And I'm sure with your indomitable spirit you'll bounce back in no time. And awesome new avatar!
Calamtykel- Zella my 8 yr old, saw a photo of one of your dolls on Facebook and is obsessed! I personally think it's your photography skills- the dolls look so beautiful out in nature like that.
I got back from Kenya last week and I leave for Indonesia and Zimbabwe on Thursday morning. I'll be gone for 2.5 weeks, I've never been away from home for that long and I"m stressed out about it. Funny, while I was in Kenya I convinced myself that I had another bump (it's just scar tissue) but my away-from-home stress/panic manifested itself in a worry over bumps. It was not fun to be so far away and so freaked out. This time I'm prepared for the tricks my mind might try and play on me.
Did I tell you guys that we tried to go all noble and wholistic and we cancelled our cable? This was 5 months ago. It was a lesson in futility. We're hooked back up and last night I went on a Hoarders binge. I'm just going to have to admit it....I love junk tv. Sometimes it's good for the soul.
'Night ladies. Think of all of you lots. I'll try and send a touristy update from Indonesia!
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Deb, your description of your endometrial biopsy, with vaccumning out all of the lining sounds more like endometrial ablation to me. I thought the biopsy was to take a plug or plugs of the lining and required dialating the cervex enough to get into the uterus. I am confused.
Am I mixing you up with someone else?
Anyhow what is it with some docs not using adequate pain measures? Perhaps we all need to make it a part of our plan to inquire and insist on pain killing measures in advance.
Minutes before my surgery I was taken to nuclear medicine. A Dr Nixon, in Winfield, Illinois did a sentinel node proceedure where radioactive material was injected around my nipples. The moron comes in, I am just before surgery and anxious, and he quickly says, "Don't you agree? We don't need to use (a numbing agent), we can just get it over with quickly and be done!" There was no opportunity in that moment for dialog or consent for him to not use analgesia. When he began I was actually screaming, it hurt me so much! It felt like he was injecting fireballs into me. Now that I am closer to being myself again I think I should sue the sob, I was incredibly traumatized by his behavior and actions.
When I saw my surgeon at my followup, I told her what had happened and she was upset. She said it sounded like how it used to be done, and she was going to go have a "conversation" with him.When I arrived back in the pre operative area I did not have the ability to tell her before surgery. I was sedated very quickly when I got back to the pre surgery area and taken off to surgery.
This was totally unnecessary torture. I have had two natural childbirths, walked back from the delivery room, had countless root canals and other painful proceedures experiences and nothing in any way touches what that proceedure with out pain medication did to me. Rant over, I probably shouldn't have put his name here, but I tell ya, I would love to have him come after me. I would love to face him across a courtroom. I think he should lose his license. How about that!
Ginger
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Deb- No worries! I'm a big girl. (c:
Ginger- Yikes! If it was just before surgery, why didn't they just wait until you were under? Yup, SOB.
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Hello Friends! I've been MIA for a while, but, as always, I have been thinking about each of you, and, as always, each of you have had lots of stuff going on!
Lizzy: I love it when you say you don't have much to do and post and write a lot. I never skim. I always want as much information (from everyone) as possible. First of all, thanks for the tip on the weight training book. I, too, am going to order it. As I've said before, I've never done weights, but thanks to you and a lot of articles in running mags a bout the importance of it, I am going to start. Secondly, I might just take you up on your offer for investment advice. I have a very small retirement fund through my former jobs in the ministry with TIAA-CREF and would love to borrow some of your wisdom. My husband is in some kind of pension plan and annuity plan with his work. But he works freelance, and his stuff is through his union, and we don't even know if he is fully vetted yet, and frankly, I don't even understand how the plan works (unions can be complicated!).
Thirdly, a long time ago, when you first got your surgery date, I put it in my iphone calendar, which is the one I live by, with an alarm and everything to wake me up at 4:00 a.m. and spend some time "with you" in my heart. BTW, I have done this for each of you, with every scan, surgery, significant appointments, etc. I do this early in the morning, especially for surgeries because so often you are already in pre-op by 4:00 or 5:00, and also because it helps keep you (all) in my thoughts all day. So, Lizzy, tomorrow, if you are lying on a bed or gurney that early in the morning, know that I will be awake and with you, inasmuch as I am able. (And if you know more about your schedule, please let us know). At any rate, I am very happy for you that you have finally arrived at this, well, benchmark, I guess. I am keeping my hopes high, not just for tomorrow, but also that this surgery will, in fact, mark the turning point in your cancer experience that you are hoping for. Good luck, my friend! You have a huge community of people who care about you, and tomorrow, you will occupy many many thoughts and prayers! We all love you!
Omaz: I am so happy to hear that your friend (what is her name, by the way?) is making such strong progress! She does indeed sound like she is a very determined woman. As you have related her story here, I expected her time in rehab (inpatient) to be much longer. I don't know if I was just wrong about that or if she has thankfully surprised everybody at her (relatively) speedy progress. At any rate, I am happy for her, for you, and everyone else who has been affected by this. I understand that she has a long way to go, though, and am glad she has your strength and friendship to continue to count on!
Ginger: It was so nice to hear from you. I have been wondering about you and how you've been doing. I hope you continue to stick around or at least pop in from time to time. I too was away for quite a while, but I have found in coming back, that this group is every bit as important and meaningful to me as it has always been.
Sweeney: Whew! What a whirlwind, huh? I hope you're having a good time with your travels and aren't too exhausted. I can't imagine the jetlag! I was thinking about you a few weeks ago because I discovered, by pure chance, The Children of Agape. If you haven't heard of them, they are a group of South African children who live at the Agape House, which is an orphanage in S. Africa, home primarily to children who have been orphaned by AIDS. You all may have heard of them because Paul Simon, Bono, and others made a documentary about the children there who had formed an utterly amazing choir, all through the inspiration of one little girl named, Slindile. They have produced two amazing CDs, the best and most known being, "We Are Together" which is also the name of the documentary. I have gotten completely enchanted with these children AND their music. I have always been a huge fan of children's choirs from all around the world. I have also always loved African music (the folk, native, gospel mostly), and while my husband has been in Indiana for about a month, I have used their music -- played very loudly, by the way -- to cheer me through some pretty rough days. Anyway, I was just thinking about you since you were in Africa, and wondered if you were getting to experience much of the music there.
Oh, also, I'm so sorry about your experience with Dr. Whatever in Winfield, but it jumped out at me because I LIVE in Winfield, less than a mile from the hospital. I went there for half of my chemo Tx's before switching to the hospital system I go to now. CDH is a great hospital, but I am sorry you got that quack. Just out of curiosity, who was the surgeon who said she would have a "conversation" with him?
Rachel: I wish you good luck with returning to full time work (officially). You said you feel like you've been fulltime for a while already, and forgive me if I have missed the details of what your work schedule has been, but how much different is this change, and how is it going so far?
Debbi: When I read about your uterine biopsy, I just shook my head, because, yes, this does seem like one of those medical procedures endured by women and under-estimated, in terms of how painful, scary and awful it is, by the medical community. I am so sorry you had to have that done. I haven't experienced exactly that procedure, which sounds like something out of Dante's third or fourth circle of hell, but I did have to have a uterine biopsy of the kind that Ginger described, and I can tell you that that was probably the most painful procedure I've ever experienced. I was given no analgesic, and my doctor went in with this instrument that hurt just to look at it, and did what Ginger said. It was kind of like this explosive hole punch that penetrated the uterine walls ( and in my case, beyond), to get a plug of tissue. My doc had said that she was really sorrow to have to do it; that it was going to hurt A LOT, but that it would be over quickly. She was right, except it didn't work on the first try, or the second, or the third... I had been post-menopausal for a long time, and I barely had any lining left in my uterus. It was so thin, that her instrument went right through the lining into the muscle, and still didn't come back with enough endometrial tissue for a proper biopsy. So after four tries, she finally said she thought she had gotten enough tissue. I have a VERY high threshold for pain, and before that day, had never been scared of or all that affected by any medical procedure, but that was an indescribable ouch, multiplied. I thought I was okay afterward. She told me to stay lying on the table for a while, just in case. The pain went away as soon as the "hole punch" was done; it wasn't a lingering pain, and this is what was weird about it, because, even though the pain was passed, my body was kind of in shock from it. I lay there for a few minutes, then got up and got dressed. I was very shaky, but I thought I was okay. So I checked out and said goodbye. left the building, and before I got into the parking lot, I suddenly and violently threw up in the bushes outside the front door (yes, with people around to see). I stood there to breathe for a second, then continued to my car. Sat down in the driver's seat, and turned quickly to throw up again on the ground. Sat there for a long while, surprised that I was having this response, and finally started for home. About ten minutes later, on a major highway, I had to pull to the side of the road to throw up again! Sorry for the long description, but, man! was it a bad experience. The vacuum thing, well, I don't even know how to think about that!
More later (if you can believe I still have more to say!). Wishing you all a great day! And oh, by the way, GO RANGERS!!!!!!!
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Hi all-
Unfortunately with endometrial biopsies pain med doesn't really work. The pain is from the cervix dilating and the uterus contracting, and an injection of lidocaine into the cervix isn't really going to help. I remember one gyn I worked with used to tell patients that the cervix doesn't have alot of sensation - it's like the tip of your nose (which I never noticed was sort of numb until she said that). It's when you dilate the cervix by inserting the pipelle that the labor like cramps start. The good news for anyone who is scared is that it is quick, really just a minute or less but it feel longer at the time.
A d&c is when they scrape the lining with a sharp instrument called a curette, but it's usually done under sedation so you don't risk moving and perforating the uterus. An ablation is when they destroy the lining of the uterus, usually with a heated balloon or laser (under sedation) in someone who has heavy vaginal bleeding (who is done childbearing).
I'm off to the cardiologist tomorrow. I saw the pulmonologist on Tuesday b/c my asthma seems to have flared up. It's strange b/c I always test negative for ragweed etc... but I'm sneezing alot so there must be something causing it. It's frustrating though, the inhalers make me jittery, and I can't enjoy the yoga/meditation classes when I feel like I can't take a deep breath. Anyway, he doubled the dosage for my advair for the next two weeks and thinks that will get me through the flare up. But, once he heard adria/herceptin he said I needed to see a cardiologist. The office is in the same building so he told me to stop in on the way out. Everyone was older than me by 20 yrs -including the receptionist -and when she heard why I was there she squeezed me in tomorrow. My parents were very heavy smokers and I smoked when I was younger and more invincible so I'm pretty sure it's asthma but I guess I'm on the specialist roller coaster now! It's funny, b/c I remember when Aidan was around 1 yo sobbing to dh that he had seen more specialists in that one year than I'd seen in my life. I am catching up and I am going to try to do it with as much grace and courage as my kids have:-)
Carolyn
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Hey Carolyn...now I'll be thinking of you tomorrow too.:) I think you're just getting red carpet service because you're young and have had the misfortune of having BC....sorry for the extra worry though.
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Wherria I'll watch out for good music while I'm there. You're absolutely right African music, especially drumming, is just incredible. And I'll look for that documentary when I'm back home...thx
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Good day warriors!
Do you all think that the time we are under anesthesia can be considered "sleep" time?! Reason being is did not get to sleep until after 4 and woke up at noon! This, of course, means unless I get knocked out by a flying object, I probably won't get any sleep at all tonight L Well, at least I will have a 5 hour nap at the hospital!
Sweeney: TRAVELIN' Jones! Thanks for stopping by, globe trotter! That is an awful story about your mind and the tricks of bump-findings. I would teach your mind a good lesson when you get home and get loaded!!!!!!!! The trick will be on your devilish mind at that point! Seriously, though, it is very scary to be so far away and think you might be having a problem. I feel for you. At the risk of sounding like elitest swine, after all this bc crap, I will NEVER travel to a 3rd world country again. After being so sick, and then that infection and knocking on death's door in the hospital after my body stopped responding to antibiotics, I can't even imagine being in a place where I could not get adequate medical attention. In the main cities, however, I know where you are you can get some medical attention, should you need it. My point is I would not go on safari at this point!
Here's to hoping your trip winds up and you are healthy, happy and back home in the Tundra soon!
BTW, on *junk tv,* I watch "Jersey Shore" and "Dancing With the Stars!" Pre-bc I would never watch this kind of stuff and here I am, can just about set my watch to these shows! As for "Beavis and Butthead," and for all you *closet fans (he he he!), those little jokers are back on TONIGHT! Now, I fully admit, that was something I watched all my life and will own that!
Sptmm: I do remember back in March when that started. I am sure they are just being cautious and don't really expect to find anything but what a procedure to go through. I think, however, the "plug" process the Ginger and Whitney describe seems worse. I think I might elect the vacumm/ablation to that plug business!!!!! Of course, when it comes right down to it, we never have choices...only directives and resistance if we don't want to move in that direction! After this surgery I hope I am done with scanville for a while! Be sure to let us know when you get your results but I am sure it is just the tamox SE. Yeah, I am a little worried about going on AIs but if it is the better solution health-wise, and now that I am not cycling, I will take it!
Ginger: after all the shit we go through, any doctor that is ruthless enough, and under the auspices of "time-cutting" directives, to do that to you should be approached in a courtroom. It is NOT slander when it is true. This person knows to come after you, polygraphs included, would be like asking his malpractice insurance to go up. BTW, the definition of slander is "a malicious, false, and defamatory statement or report." He was malicious in encouraging you to go without anesthesia, purposely gave you false information, to no doubt save time, as human animals are known to act particularly egregious when the outcome is connected to either time or money and finally your report is not false and therefore does not seek to arbitrarily defame. On that note, you should invite him to court! I would like to see him in court explaining how he put you through a breast cancer patient through tremendous pain and upset and his reasons were...? Does he have breasts? Does he know what that would feel like?
Wherria: thank you so much. I need special thoughts and prayers! More good vibes, the better! I am really so happy to have a female PS as all the ladies I have met in the bc center at Yale have good things to say about her and, to be honest, I just feel a woman knows better what we are going through. For this reason I am so happy to have found her.
As for your TIAA-CREF retirement account, if you are no longer working for them in any way, you are eligible to roll that to an IRA. This is for everyone BTW: IRAs are NOT meant to have CDs sitting in them at the local banks. If you really want to MAXIMIZE your dollars, when your CDs come up, ROLL those accounts, while liquid to a BROKERAGE IRA. There are tons of brokerage houses and I personally like Schwab. Once you get your funds in a liquid form in a brokerage account, you can then buy the very lucrative STOCKS in those IRAs and grow your money while you are all young enough (below 80 y/o!) to see it experience growth under the gyrations of our healthy market. We have the best markets (stocks, bonds, reits, CMOs -no, they are not the devil's fodder(!)-, mutual funds, annuities, variable annuities and the like) there is ZERO reason to sit in a very non-productive bank CD. The interest is less than paltry and the fact that you will have to pay taxes on these funds down the road, do not seek ridiculous safety because in pursuing safety, you are actually incapacitating yourself financially down the road.
So, Wherria, God willing I make it out of this surgery but, should I not, you now know what to do! I will, however, be in touch with you through either PM or phone to let you know what additional steps to take on investing those funds. I am more than happy to help anyone. I am no longer licensed in the industry therefore I can freely tell you all whatever I know and whatever I feel you need to know! 11 years I lived and breathed it so I can let you all in on a few secrets! Now get those brokerage IRAs open and let's get rollin'!
On the African music, I love it! My new phone also has a ringtone that is a drum rhythm and it sounds very much in that vein. I like it!
Go Rangers, indeed! When the Yankees go down early, I am still a baseball fan!
Ckptry: as you know, and because you are a nurse, allergies can come on at any time and I noticed since chemo that I am sneezing and my general balance seems to have been upset but then I start singing that song again, "Born to be Alive," and I am reminded that chemo is not a bane but a savior and I stop cursing it!!! I hope everything is fine at your appointment today and your results help you find a solution that does not make you jittery and that which helps you breath easily. As for you catching up to Aidan, what a dubious marathon for you two to be involved in! My heart goes out to both of you.
My new avatar: I took the photo so close so you all could actually see my witchy face! It appears I was on top of the camera, however! In any case, off to do Zumba and laundry! Good times! I am so berserk about having everything wicked clean and all my bedding cleaned etc.. before surgery...it is almost OCD!
So, and just in case I don't make it out of surgery ...!, you all have your homework: open IRAs at Schwab, roll non-productive IRAs into that new IRA, and go forth and prosper! Oh yeah...and watch "Beavis and Butthead" also! I think in tonight's episode, in their neverending search for girls, they are going to try to become vampires! They find a guy who looks like a vampire but he is actually homeless and has Hep C. They, of course, get Hep C trying to get some vampire fluids from him so they can become vamps. I guess they sit at home on the couch, getting so sick from Hep C but they think they are becoming vampires instead!! The last preview clip I saw showed them barely able to walk out of the house/crawling out to attack "chicks" with their newfound vampire status!!! It is a cartoon....put on your kid glasses and enjoy!
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The warmest of healing vibes to you tomorrow Lizzy. You'll do great. I look forward to joining you in Dec.
Thank you for those descriptions Carolyn.
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It must be 5 AM there. Gentle hugs and many blessings for an uneventful proceedure and comfortable recovery. Hugs Gingerbrew.
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Good Luck Lizzy!0
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Hello everyone!
Here's hoping Lizzy is out of surgery and resting comfortably!
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hope she's resting comfortably!
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Thinking of you Lizzy, hope everything went well!
Debbi
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Lizzy is fine! No more foreign bodies...... or foreign boobies! She will check in tomorrow. (c:
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Thanks Adey!
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Carolyn - my allergies have been horrendous. I'm on two different homeopathic things that are definitnely helping but if I don't keep up with them I'm in BIG trouble. Mine are bad in the morning. I always get bad this time of year with the mold.
Interesting about the endo -biopsy - I didn't realize the meds didn't work -- I felt that it definitely took the edge off the pain (possibly just psychologically in light of this!) judging by what other women said to me - I had two people tell me since I had it done that it was the "worst thing I have ever been through" and I didn't feel that it was - and I'm a gigantic baby about even having a Pap smear...... I felt it was kinda like a medium/bad contraction during labor -but the idea that he was up there with an instrument is what I didn't like...and the fact that he warned me that I could vomit or pass out was a bit unsettling!!!! =:O
It's cold and rainy here in the Northeast. Thinking of Lizzy today...........
Had a great day in NYC yesterday with my mom and the kids. SO happy we didn't go today! My DS, 7, is having another bout with lyme disease - we have SO many ticks here suddenly in the past couple of weeks! and darn it if he didn't get bit again. Off to the herbalist to get his tincture - I already see a huge improvement for him on it!
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Lookin for Lizzie! Hope you are comfortable and nicely relaxed. Healing thoughts for you!
Ginger
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Hi Lizzy! Good thoughts from Jakarta tonight all the way to Connecticut! Hope you're comfortable. Big hug.
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Good evening warriors-
I am home! Geesh, all I did was sleep. The meds knock me out. In any case, I am home and sore with my lovely drains!
Thank you all for the well-wishes and concern. I really appreciate it. In any case, I am wicked tired so off to sleep I go.
Will post more tomorrow-
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Great to hear from you Lizzy, rest up! Glad to hear everything went okay.
Cal: Your description of the pain on the endo biopsy is accurate. It was kind of like a bad contraction. The problem for me, is that while it was brief, it took about 5-10 minutes because there were some problems with the equipment and first they took five minutes "trying" to retrieve a big enough sample and then after realizing there was an equipment malfunction, had to do it all over again. They did numb my cervix by the way, so I just felt a quick pain when the inserted the instruments. All in all, not a pleasant experience, and one I definitely will consider having done in the hospital should I ever need it again. And in fairness to my GYN, he gave me the option of going to the hospital but I would have had to miss a day off from work, and having had five surgeries (with the most recent just 6 weeks ago), I chose to do it in the office. BAD CHOICE on my part! Glad to hear you had a good time in the city. It is a great place to visit with the kids, we love the Museum of Natural History.
Carolyn: How did your visits go with the doctor?
Omaz: How is your exercise regimen going? Are you taking classes, or just pumping iron?
Rachel: How did your son do in his race?
Well, I have a lot of work to catch up on, so I will check with you guys later. Lizzy....REST and feel better!
Debbi
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Lizzy - Glad you are home safe and sound!
Sptmm - I am still doing the free weights and now adding in abs things. I wanted 6 and 7 pounders so I ordered what I thought was a set of each last week from amazon and got one box with one 6 and one 7 pounder. lol! Actually it's ok because I heard that there are benefits to using uneven weights so I'm doing that. I also swim and walk. today is swim day. My goal is to swim sat-sun and weds. I still need to lose 10 pounds though. working on that but not making much progress. How is your exercise going? Have you gotten back to the gym as much as you want?
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