Lumpectomy Lounge....let's talk!
Comments
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immags, I was very newly post lumpectomy when I had my MRI. I was terrified because I was sure my incision would hurt. It was so easy. It was a partially open MRI machine. You lay in the prone (or porn) position with your breasts in cut outs that are covered by soft material. Probably the only bad part is the noise and the contrast which felt strange. My center gave me headphones which had relaxing music. I am a bit claustrophobic and it was pretty easy. You do have to lay with your arms over your head, so I did some stretching ahead of time. Good practice for rads.
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iammags I took Ativan before my MRI as well. I do not think I could have handled doing it without taking it. It helped me a lot. I had a mini-panic attack before hand (before taking the Ativan) and it helped a lot to get through. Any MRIs in my future will have a little help from my friends (Ativan) lol
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Ayr1016, I wasn't real good about writing on photos for awhile when first married. HOWEVER, I am perfect with my digital ones. For one thing I download them every time I take some and I label them right then. I also don't take thousands. I do print photos, too. I recently read that we really should print out our photos because we don't know what the digital world will be like in 10 years but printed pictures will be with us forever.
Sloan, good luck!!!
IAmMags, I'm not claustrophobic and didn't need an Ativan. But boy my back hurt from being sort of "swayed" after my first MRI. When I had one 8 months later, I knew what to expect so I could settle myself more comfortably and take a preventative dose of Tylenol. DH had an awful time with MRIs and he took a Valium before he left home, one when he got there and one just before the MRI. Needless to say, I drove
HUGS!
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Had MO apt today...a 'one month post start of Arimidex to see how you are doing' apt. He will see me in two months. In the meantime, the 'highlight' (not) of today's apt was getting the 'ok, now that you are done with rads and chemo it is time to start thinking about losing weight' lecture. Sigh. Was hoping to avoid that one. As soon as I have a spare minute going to try and figure out how to link my iPhone to the fitbit group...
Welcome to iammags and hugs to all!
Octogirl
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Octogirl, glad your MO appointment went well. Ugh on the "lose weight" lecture. Didn't you say you just started up swimming again? That will be good. Good luck with the FitBit - I know nothing about them and synching to phones. Ask a kid - they know everything
Or maybe someone at BestBuy or wherever you purchased it.HUGS!
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Octo, my MO follow up appointment is March 11. At the last visit I told her that I know I have to lose 10 pounds to get my BMI to where it needs to be. She wrote on a post-it note the things to focus on: Exercise, Alcohol, Sugar. I will get a talking-to about the first one.
iammags, welcome to the group! As my 19 year survivor friend calls it "the sorority that no one wants to join."
MLP3, looks great! Glad you were able to make it a fun day. I was going to tell you to go to Georgetown Cupcake down the block, then remembered that it might not be your idea of a treat.
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Good point Peggy!! I have so many digital ones. I need to start printing them out and putting them in albums. One more thing on my to-do list
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Octogirl, you have my email address. Just send me a friend request on Fitbit and then you add everyone else.
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You guys are awesome!!! MLP3 - Thanks!!! loved that pic LOL and your pics too, you are gorgeous!!! So sorry you're onto chemo!!! We dont do oncotype tests here, treatment is based on the Grade, so a 3 is automatic chemo here uuugh! Glad youre doing all the right things for you.
JCLC - Ive been on Arimidex about 2 weeks, dreading ANY weight gain LOL, I put on like 3-4kg thanks to Chemo and steroids, so desperately want to shift it!!!! do not want to be hindered by Arimidex LOL. I tried taking a prescribed Effexor for hot flashes, diabolical, s/e's were horrendous I had to stop immediately. So hot flashes a plenty here haha!
Ive lost track where everyone is up to in treatments?
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i'm going for cycle three on Wednesday, starting to dread it now because I'm feeling so normal. Also because cycle three is the last one of this medication, and at least I know what to expect from it. Then I switched to another one (docetaxil) for three cycles, don't really know what to expect or how I will tolerate it. I feel so lucky that I've tolerated this one so well though, I really do! I'm not anticipating any huge problems with the last cycle, and that means at least half of my chemo will have been pretty tolerable for me.
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LTF, good for you. I'm glad that chemo has been quite doable for you. Very encouraging for others who are about to embark on that path. Hopefully the last 3 will be the same.
HUGS!
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I met with Moondust today for coffee. She is so kind, beautiful and easy to talk to! It was great. I'm very motivated to get fit with her as my mentor, too. (THANK YOU MOONDUST! And I loved the story about how you came up with the name. )
Octogirl, I have my appt on Tuesday, so I know weight is on the list for me, too... But, if it'll help us avoid recurrence, I'm all for it. Glad u are joining us on Fitbit!
LTF - You can do it. Keep exercising when you can and eating right like you are, and these next three will fly by. Keep your eye on the prize and not on rhe SE's. That's how you'll get through this.
Peggy - Starting the book! (I had to ramp up to getting organised! Haha)
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LTF - That's so awesome youve done so well with Chemo, so do you only have a total of 6 infusions for Chemo?? Gee the Chemo drugs are so different for everyone. I did 12, plus I think my Chemo was different to yours, I think it depends too which treatment and drugs they use as to the severity of side effects maybe? Sooo happy for you!!! My regime was so super tough, am not sure to be honest, I could tackle it again, is one of the main reasons am edging to the mx and hope Ive done all I can to stop it coming back, which I feel it would be.
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Sloan, there's nothing better than meeting BCO friends in real life! Glad you and Moondust were able to. Good luck with tidying and finding the things that "spark joy." I find that I now apply that to most things in my life. Happy decluttering!
HUGS!
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I'd imagine that too Pontiacpeggy!!! would be great meeting up with fellow BC friends, uuugh Im not in touch with any down under LOL. Oh well, and I didnt and wouldnt join a support group or anything.
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Mel - I was talking about "support groups" with my husband today. I told him what others had gone through about feeling guilty that their cancer wasn't "bad enough" or being weirdly one-upped by someone at a different stage. I was reading what others wrote about support groups, and I was encouraged that Chisandy found a great group. For me, I guess that most of us in here are not stage4 so we have lives outside treatment is good for me --it helps me move on. BUT, we all have that lingering feeling of stage4 recurrence in our brains that never goes away. I think that is the immediate sisterhood I feel with everyone in this group. You understand. Period.
My husband also laughed heartily and said, "You guys call it a LOUNGE? That is so great!" Cue the visual on that one! I'm sure I have a glass of wine in my hand in that visual!
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Oops, I did it again (no, not a Britney Spears fan). Had a bit of a flare this morning that the LE therapist thinks may have been AI-induced morning stiffness, since my ring was loose again a couple of hours after taking my daily Celebrex. The rings on my L hand are always tight, since they're a good size smaller (I was a rather petite bride 45 yrs. ago). Had a decent therapy session, including new resistance exercises while wearing compression. Went to my neighborhood bead store, where the owner attached my Space Needle and Water Tower charms to Pandora-gauge rings; then to Metropolis for fresh espresso beans and a cortado. Got home and put on an egg to soft-cook. Then went into the front room and found several small parcels: the final two charms I'd ordered (Italy flag, mini-passport). The mini-passport was in an envelope I cut open with shears; the flag in a Priority Mail box swathed in tape. I took a letter opener in my right hand, wiggled it....and you can guess the rest. Stabbed right below my L index finger. Washed it out (yeeee-OWWWCH!!), wadded up some sterile gauze, wrapped my hand in a washcloth, raised my hand overhead and leaned hard against the doorjamb. As soon as it stopped bleeding I applied a band-aid and wrapped my hand in self-stick elastic gauze tape. Then the timer rang and I ate my (perfectly done) medium-cooked egg. (Waste not, want not). Then out the door to the Immediate Care clinic a couple of blocks away.
I said “again" because just about a year ago I was about to slice a lime that was more than a tad past its prime. Had my L hand fingers bent under, yada yada. The lime rolled away, the 8" very sharp chef's knife came down on my ring and middle-finger knuckles. Wrapped my hand in a kitchen towel and walked as fast as I could (took a chance and didn't even lock my door) to the aforementioned clinic. One very painful lidocaine shot and six sutures later, I walked home with my fingers buddy-taped and splinted together, with a big honkin' bottle of clindamycin.. No gigs coming up then, however. But I have a house concert to do Sat. night. Fortunately, this time I needed only iodine, skin glue, Steri-Strips, and a Band-Aid. No antibiotic necessary, and full mobility in my fingers. But since it is kinda sore, I will cover it with a latex glove and then a cheap polypro knit glove, fingers cut off both of them. Need the polypro so my hand can slide up & down the neck. But no lifting anything heavy for at least a day, which means no practicing unless Gordy can lift the guitar case onto the sofa. Otherwise, I have to rely on muscle memory. At least I don't need any painkillers (but might take a Norco at bedtime tonight. (And I put the steak I was going to grill into the freezer--not gonna cook tonight, just order out for pizza and discipline myself to eat just one slice). Had thought I might treat myself to something at the frozen custard/pastry shop on the corner on the way home, but it's just too darned cold to contemplate eating frozen-anything (and I sure don't need the carbs & calories).
Still gonna rearrange the beads & charms on my bracelet, as soon as Happy the Perma-Kitten is safely deep into his nap so he can't play hockey with them.
Welcome, mags! Sorry you have to be here but glad to have you!
And Jill. mazel tov on getting so far through chemo!
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ouch chi! Hope it heals well and you are good for Saturday night.
Yup Melclarity, 6 infusions. A common regimen here called FEC-d...I get 3 FEC, then 3 d! After that radiation, and then I will be on medication for five years. She says I will probably start with tamoxifen, and after a few years perhaps change to the other one (A something). From what I've heard from local women, regardless of the type of chemo needed, 6 to 8 infusions seems to be common. Them Herceptin continues (but I'm her2-).
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Mel, my one experience with a support group was very sour.
Sloan, I'm with you. This lounge (glass in hand!) really meets all my needs for support. I hope that none of us ever feel so embarrassed or stupid or shy to ask questions. I think we all really KNOW each other. I didn't get a warm, fuzzy feeling at my "real" support group meeting. I do here. And when I have met BCO'ers in person, that same feeling persists. The feeling of sisterhood and camaraderie is extremely strong.
Sandy, at least you are close to an urgent care. You must be ticked at yourself. I'm relieved it wasn't worse. That lime incident sounds terrible. Glad you can still play. I love re-arranging the beads on my Pandora bracelet. #2 son (the one I'm moving to be near) and his wife have given me all of my beads. For Christmas they gave me two: a poinsettia and a daisy one. For most of my life we owned a floral shop and greenhouse (and DH was a floral designer). The note DS wrote was awesome: "Christmas this year is tough I know but hopefully this will bring back happy memories." It was tough and the beads brought back memories of working long, satisfying hours at Christmas, and family celebrations. I'll bet your bracelet brings many happy memories, too.
HUGS!!
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LTF - Oh ok, guess it depends on lots of things, as in stage of it, grade. Most women I met were doing 12 minimum yikes!!! and lots doing more. Actually I think our FEC was similar, though you had Ellence? and I had Adriamyacin. Not sure if your Docetaxel is the same as Taxol I got, I think they're similar? Yes Tamoxifen as thats for pre-menopause, which I was on 4yrs. Then Chemo through me into menopause LOL, so Ive just started Arimidex and I find it fine, no SE's, just dont want the weight gain!!! so will have to work hard
Youre doing amazing!! I'm still wigging it!!! and its HOT here, but my crew cut isnt thick enough yet to go out with uuugh! And I just wasnt a wrap kinda gal apart from treatment days. Sloan - Oh yes, I saw briefly the talk of the support groups, and thing is, sure there are all varying degrees of it, its very individual, but it is still a commonality, so I really hope nobody ever feels they couldnt do a support group because their BC wasnt a worse scenario. Everyone brings something unique to the table I say!!! in their experience. I think they are great!! just not something I feel I'd want to do at this Stage.
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Peggy, the Pandora-esque bracelet I have is also my Medic-Alert one. Figured if I had to walk around with a big pink plaque on my wrist I might as well have some fun with it. The genuine Pandora charms I have are the Eiffel Tower, a little New Orleans disc, heart-shaped flags of Spain and Italy, and a pink crystal b.c. ribbon. The others are beads: silver with musical symbols, silver wine-barrel with grape clusters, Star of David with blue crystal (anti-Evil-Eye), January pave birthstone, silver-and-vermeil cat and larger Murano glass black cat, and a little coffee cup with latte-art; the dangles are the aforementioned passport, Water Tower, Space Needle, guitar, and Empire State Bldg. w/attached pave garnet Big Apple. Decided against getting scales-of-justice because people might have assumed I’m a judge (never was), and I never really enjoyed practicing law (although I did so for 40 yrs). As I add charms or beads, I’ll remove spacer rings.
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yes Melclarity from the looks of it our regimens are quite similar. I do know that the one I'm on is also done in Australia, not anywhere else about Canada and Australia.
My oncologist said because I'm done having children and not super young, after a few years on tamoxifen she'dlike me to switch me to the arimidex, it will put me in menopause but is also more effective. I will probably consider it, except I am worried about weight gain. It's unfortunate I didn't start getting into good shape until I was 36 years old! I always knew eventually I would go into menopause and it would be harder to stay that way, but I didn't think it would be so soon
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MLP, sorry you have to do chemo, but at least your Oncotype was not equivocal. I think it's really hardest on those whose numbers come back in the lower intermediate range, 18-22. I didn't find chemo to be nearly as bad as I thought it would be. BTW< you are rocking that wig!
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Jill, with your diet and fitness routine you will probably be one of those who maintain a normal healthy weight on AIs. Menopause wasn’t bad for me, and neither is my “second menopause” on letrozole. Yes, I get morning stiffness, but it’s much less than I had before my knee replacements and one generic Celebrex keeps it at bay. And although I sometimes get sweaty, I still don’t know what a real “hot flash” feels like (though I once did get a severe flash-flush when I tried taking niacin to bring down my cholesterol when I was only 37 and a year later when I was put on sulfa for walking pneumonia--both times I felt like I was on fire, but the sulfa reaction was longer and much more severe, landing me in the ER on a Benadryl drip. That’s how I found out the hard way I was allergic to it).
Found out from my MO’s office that neither Medicare nor my Part D (Humana Enhanced) will cover Prolia--it’d set me back $10k/yr. (It also could trigger very serious infections that might not be curable by the antibiotics I can still safely take). Zometa, however, is covered as a Tier 2. She told me to ask my DDS before deciding. He says I have plenty of healthy jawbone, and I should be fine so long as I get any extractions, root planing or implants done before I start (or wait at least 6 mos. after an infusion). And my gums and X-rays were fine this time. So the only risk might be those paradoxical spontaneous horizontal femoral fractures (i.e., thighbones snapping in half w/o any triggering event) that have been (very) occasionally reported. But with my DexaScan T-score of -2.1 in the L femoral neck, I have a far higher chance of a debilitating hip fracture from a fall or blow in the next 10 yrs if I don’t take anti-osteoporosis meds than a femoral fracture from Zometa. Zometa is more expensive than Fosamax or Boniva, but my GERD makes oral bisphosphonates a non-starter. At any rate, my MO says the tumor-growth-suppressant results seem to be better with Zometa/Reclast than with either Prolia or orals. I asked why, if they’re both brand-name drugs with identical composition, Zometa is cheaper than Reclast--the support-group moderator (a bc nurse) says it’s because Zometa is the original, prescribed for osteopenia or osteoporosis in general, and Reclast is the same stuff but re-badged for use in women taking AIs. Prescribing Zometa “off-label” is not only cheaper but more common among MOs. The analogy would be Wellbutrin/bupropion--labeled for use as an antidepressant--being prescribed for smoking cessation rather than Zyban, which is the same pill but in a different color, marketed specifically as an anti-nicotine-craving drug...at twice the price of its predecessor and at least 4x as much as the generic.
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Second visit with the PS today, 1 week post-op. I actually saw her on Monday because the little booblets looked weird and blackened in several places, plus I was running fevers. She was worried about tissue necrosis, which means death of the tissue--there's not really anything to do once the tissue dies, except cut it out.
Today, she deemed the booblets improved and thinks that perhaps the tissue is merely bruised. I was hoping to lose at least one of the drains today, but nope! Keeping all 4 for another week. Pain in the butt. One of them is really draining a lot, 3-4 ounces a day! And it's very squishy under my right arm, site of the original seroma. Back then I saw an LE specialist, who determined that due to all the complications I had after the LX that I would probably be at higher risk for LE. I'm hoping that what I'm feeling is simply fluid from the surgery and NOT lymphatic fluid. I keep massaging it off & on and I can see that it is draining into the drain, so maybe it's not lymphatic fluid after all. I do think that after I get the drains out I will go back to see the LE therapist for a re-check.
DH and I settled on our vacation this spring. I'm being sent to San Diego April 1 for a nursing conference. The company is paying my way, so my DH is going to use FF miles to go with me. We've been tussling about what to do with the 4 days following the conference. He wants to go to San Francisco, which I could care less about, and I want to go to Disneyland. Well, today I realized that I actually have Tues-Sun available, so we can do both! Duh~! I'm a huge Disneyphile and although I've been to WDW a lot, my heart is in DL. However, even though I'm not keen on SF, I have a feeling I'll end up being glad we did it. Every time I've given in to DH on a vacation that I thought I would hate (NYC, cruise, DC, San Antonio), it's ended up being great.
Now, we just need for our tax refund to hurry our way.
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Sandy, I'll have to remember that about Prolia since I don't play well with antibiotics either. So far I'm doing well on Fosamax. Drug prices are a crock - especially those "re-purposed" ones with a new name. Seems very wrong to me.
HUGS!!
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Wow- y'all have been busy.
MLP- GREAT wig- who knew they could look like that? Sandy- oh my- glad you are ok though it sounds bad enough! Scary stuff.
LTF- You have done great with the chemo- it is hard to gear up for each infusion- especially when you feel better and just don't want to feel bad again. Remember- you are evicting the cancer and kickin' it- HARD- to the curb!
Welcome, Mags! Sorry you are in the club but glad you found us. Have taken small dose of Ativan as needed this whole ride! Octo- glad you are joining the fitbit group- it's very motivating!
Sloan and MD- SO glad you were able to meet and visit today. Remember everyone, Sandy is playing at the American Honor Alehouse in Hickory, NC on May 22.....would love to see any and all of the loungers that night! Let me know if you think you might be able to come.
MO apt and Herceptin today. Drive took 2 hours due to traffic- left here at 7:00 arrived there 9 for 9:15 appt. 4 hours later- left the office- saw my sister and headed home. Looong day. I could get the Herceptin every week but the drive- so the infusion takes 90+ mins, plus premeds. Guess I should be glad it isn't taking the 6 hours like the Carbo, Taxotere, Perjeta and Herceptin combo, right? MO pleased with how things are going. Yes, I need to lose weight. Retaining fluid and having some hot flashes but that should settle down they said. Hope so! Taking DS back to Charleston early tomorrow so he can get back to work. Am hoping he is fully recovered from the flu or whatever he had. Another 6 hours in the car. Planning on at least putting feet on the sand for a few mins- maybe up the FB steps, ha.
Hugs to ALL!
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Dear Iammags: Good luck with the MRI tomorrow. I am sorry that you had to join our club but we are a wonderful and entertaining group of women. You will fit right in.
Dear MLP: Sorry about the chemo but good luck. The wig is gorgeous and so natural looking.
Dear Poodles: I hope that you are feeling well post surgery and that you get the drains out soon.
Dear ChiSandy: You are really funny. Thanks for making me laugh. I am sorry that you cut your hand. I hope that you are ok and that it heals quickly.
Dear Melclarity: You and your daughter are both beautiful.
Dear Sloan: Good luck with your blood test results.
I have forgotten who is starting rads and chemo. Sorry. Good luck with all of your tx's to whomever is undergoing surgery, rads, and chemo.
My goal is 10,000 steps per day. Good luck to the fitbit group. You are all so ambitious and amazing. I don't have a fitbit. If I did, I think that I would have to put it on my dog to get the steps in to keep up with the group. lol
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Poodles, I'm envious that you are planning on hitting Disneyland. I was there the summer they opened - yup, 1955!! I was 10. I don't remember all that much. What stuck out was how expensive the rides were (you paid for each ride separately at that time) - 50¢, iirc. My parents were horrified. But we had a good time. I haven't been to either since. Of course I love SD since #1 son and wife live there. I'm a native Long Beach-er. I am soooo living in the wrong part of the country! Glad you are healing. Fingers crossed no LE!!
HUGS!
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Jclc83 I saw your post about Arimidex and weight gain. I lost 25 pounds right before being diagnoses. I have been on Arimidex about 4 months and have not gained any weight. I do work, watch what I eat (I avoid bread and sugar as much as I possibly can) and exercise regularly. So you might not gain weight.
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