Lumpectomy Lounge....let's talk!
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HH, I hear you. Couple of weeks ago, I tossed all my old GladWare containers (which were never supposed to get “old," because they're disposable) and bought a bunch of BPA-free ones. Same with my water bottles. I shudder to remember that I used to save the little melmac plates on which Jenny Craig frozen entrees were packaged--we'd nuke them over & over till they cracked. We've stopped using anything other than glass or ceramic for microwaving.
As for cans, is there anywhere to find out which foods are sold in BPA-free cans? Being low-carb, I use quite a bit of tuna and sardines, as well as some veggies I keep as staples when I don't have fresh or frozen on hand.
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Sandy- Here is a list I found at Inspiration Green. AM sure there are others but this is a start.
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I don't use much out of cans but we do buy some. We threw out our plastic containers and use glass now. I try not to nuke much either. More for the younger people in my household than myself.
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Peggy, you have been very quiet. I am hoping this means you have some interest in your house from potential buyers? Are you spending all your time keeping the house clean? Miss you!!
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Well I worked my 3 days this week, they turned out to be horrific, have a major behaviour in my room which is 1 on 1 for 6hrs straight. My day to stop yesterday, not surprising I broke....had a major meltdown, the stress of the job tipped me over the edge with the responsibilities of being a single parent and running a home and then having a minute to ponder the fact Im recovering from my 2nd bout of BC. Im doing all the right things, but everywhere I turned yesterday for support or understanding there wasnt alot. Nobody understood my tears, my fatigue and exhaustion, my pain or frustration. The reason I transferred out of the job in 2014 was the horrendous stress of it, scared yesterday of the stress again and what that will mean to my life and BC. There are no easy solutions, its all about balance. My kids are fantastic but they are not the same as having a DH who would do so much. I fell on my ASS yesterday and am so mad with myself that I actually entertained my thoughts running rampant into the future of What ifs!!!!! I always swore I would never do!!! but the stress of everything pushed me that far...Im so crippled in the mornings, my lower back is so painful and legs still from Chemo...Im waiting for my MO toget back to me. Ineed to grab everything and get back to balance. The worst thing in all of this??? NOBODY understood why I fell apart yesterday...which broke my heart even more...
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WE understand, Mel! Sending you hugs and love.
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Mel - (((Hugs))) We understand!
I go into a "cave" when I'm stressed. I don't return calls, text, go online, etc. I've been so nervous about all my scans and tests, that I have been in my cave. Moondust rescued me today and we walked and talked and got our Fitbit steps in. I know she understands. So, Mel, we may not be there to go on a walk with you, but I hope just writing about it KNOWING that we understand gives you comfort.
Moondust - Thousand thanks. We are a good tribe of 2.
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I get it Mel. (((((Hugs)))))
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Mel: (((hugs))) We definitely understand. Wishing you some peace and comfort knowing that we are here for you.
It is interesting that BPA has been mentioned. Just this past week, I have been going through things and found some Tupperware that I have had for at least a decade (probably more). Looked it up, they stopped using BPA in 2010. OMG!!! I got rid of a lot. I am buying glass and ceramic. I have noticed that the BPA free cans will list on the label if they are BPA free Seems like so far, I'm only finding organic canned goods that are BPA free lining. I have not clicked on the link yet, but it is amazing how many things BPA is actually in.
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Dear Brutersmom: I order the Teva brand. I just switched pharmacies from Walgreen's to CVS because my pharmacist at Walgreen's told me that Walgreen's can only get Accord now. Unfortunately, I just went to pick up my prescription today and CVS said that the Teva did not come in. I refused to buy the Accord brand and I said that I would wait for the Teva brand. I have enough of my prescription left to wait a few days. I cannot imagine that Teva stopped manufacturing Anastrazole. I need to stand up for myself and I refuse to accept the Accord. Good luck with your medication.
Dear MLP: Your son is really wonderful. I hope that he enjoys the prom.
Dear Gemma and Moondust: Good luck with rads. I hope that you are both feeling well.
Dear MLP and LTF: I hope that you are both feeling well with chemo.
Dear Peachy: How did the ultrasound go? Are you ok? I am sending hugs to you.
Dear Peggy: I hope that you are busy selling your house. My neighbors are moving and that has been making me think about you a lot. Good luck. Sorry that you will have to keep the house spotless for the potential buyers. Housework sucks. Wouldn't it be nice if we could all have butlers!
Dear Sloan: How is your son doing with registering for his Physiology course and with his applications? Good luck to him.
Dear Melclarity: I am so sorry that you are having such a difficult time. I can totally relate to how you are feeling. I am a single parent with no help and I have a very demanding and stressful job too. I love my job but I am working at least12 hours every day. It is so tough. I am currently in the process of taking out a home equity line of credit on my house so that I can pay my bills. (I just got a $1000.00 medical bill that I have not paid yet.) It is so stressful to work this hard and to feel like I will never catch up, let alone, get ahead. I have not had to deal with a recurrence or chemo so I cannot address those particular difficulties that you have faced. However, I am constantly worried about bc because I have had a biopsy at each of the two 6 month mammo/sono/MRI's that I have had since completing rads in October 2014. They found ALH in November 2015. It is scary. Thank God that the biopsies have been benign but I can't help worrying. I wish that I could make you feel better. The only thing that I can do is to tell you that I understand how you are feeling and that I feel the same way as you do. It is so overwhelming. I wish that I could personally give you a hug. Feel better and good luck.
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Oh, Melclarity, that sounds like a God-awful day. It's bad enough to be battling all you have to do with BC, but then being a single parent AND working at a job with very challenging students is just too much. Is there any way you can take a leave of absence for a while, until you get most of the chemo behind you at least? I'm sorry that no one was sympathetic or helpful. That just makes the whole situation worse. I'm gonna send you a hug RIGHT NOW!
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Oh, did I mention that I need a new air handler for my air conditioner (= expensive) and my screen door just broke off the hinges.
Most likely, my son has mononucleosis. He is feeling worse each day. The lab results have not come in yet. Now, he has white spots all over the back of his throat and his glands are visibly swollen. He just finished antibiotics - Z-Pack today but it did not help. This quarter is a disaster at school for him. He feels awful and I cannot make him feel better. I just went to the store to buy Gatorade for him at his request. Maybe that will make him feel slightly better. I never buy anything but water to drink.
My daughter went for her orientation for her potential CNA job. She will have to miss 4 days of classes for the orientation and she does not know whether she is hired yet. They asked her for 3 references. She gave 3 references. One of the references whom she listed is her college advisor who just wrote a letter of recommendation for my daughter. The CNA supervisor called my daughter's advisor. Since the advisor did not know that someone would be calling her regarding my daughter, the advisor told the person who called that she could not give a reference for my daughter and to take her name off of the list. Now, my daughter is freaking out that she won't get the job. She is also scared because she will have her advisor as a teacher next semester. She is afraid that her advisor hates her. (She can get dramatic.) My daughter emailed her advisor to apologize for listing the advisor as a reference. (It was a beautifully written email.) My feeling is, "Why is this person a college advisor???" She just shattered my daughter for absolutely no reason. An advisor is supposed to help their students.
Thanks for listening and letting me rant.
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Wow, what a bitch that counselor is! Young adults need all the helping hands they can get, would it have killed her to do the recommendation? She sounds like a tight ass prune face
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614, you're daughter's advisor sounds like a moron. I know advisors often have a huge case load, but he/she should have been able to look her up online quickly and given at least a cursory recommendation. I don't know what the law is exactly regarding that. I know a few years ago I listed a teacher at a school I worked at, as a reference. She was told not to answer and it was referred all the way up the chain to the county office. Did I mention that I knew NO ONE at the county office? Turned out, all they could really say was whether they would re-hire me or not--that I was in good standing. What's the point of getting a reference if the person asked for a reference can't actually give it.
I know all about the drama of college daughters. I'm sure she's a smart girl; she'll figure it out. My mother taught me a long time ago to not get caught up in the drama--she learned that from me, unfortunately. I would get homesick, call home, complain about everything for about an hour, then hang up and get on with my day, now feeling much lighter and able to cope. Meanwhile, my mother was 200 miles away and worried sick .This was, of course, back in the days when we didn't have a phone in the dorm room and long distance call were expensive, so she couldn't just call back the next day to check on me. When my own daughter went off to college I saw the very same pattern in her. She'd call home all teary, unload, get some sympathy, then hang up. I would fret and worry for a day, then call her back. DD would act like I was crazy for calling because she had by then moved on. Mother's can't win, can they?
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614, Mel--that’s why we’re here--we are a rant-safe sanctuary, no repercussions allowed. 614, if it’s mono, no wonder the Z-pack didn’t work, since mono is viral. If the white spots are strep, then a different a.b. might be in order. (If he has mono, then the Z-pack may have killed off the ambient oral flora and allowed yeast to take over. Ick. But there are treatments for that). Hoping the docs can finally zero in on what it is and either treat it or manage its symptoms till it disappears (mono is self-limiting).
HH, thanks for the canned-goods list. I’m nervous, because a lot of the canned tuna I buy is imported from Italy & Spain. Used to buy King Oscar sardines but have switched to Wild Planet. (Can’t believe Whole Paycheck would sell anything containing or packed w/BPA these days).
It hit me today: two weeks from this very hour I will have (I hope) fallen asleep on my flight to London. So begins the running-around-like-a-headless-chicken ritual of rounding up the adapters & convertors, the travel kettle & manual pod espresso maker (only one of my hotels--the one in London--even provides a coffeemaker or kettle in the room, and I must have my coffee before I can go downstairs or call room service for coffee)! Also, trying on travel-friendly outfits that are also business-appropriate to make sure they still fit; making sure I don’t run out of any Rx-only meds while I’m abroad (and reminding myself to refill them if necessary in the few days between getting home and heading to San Antonio), taking my suitcase up to Kaehler to get its handle repaired (it won’t stay locked in the extended position), downloading and studying my curriculum for the Lausanne leg (9 hrs. of training in diversity law) and making dining or sightseeing plans for my free time. Once again, I blew it by forgetting to apply for Global Entry....so am hoping the weather is decent enough to wear slip-on-and-off shoes to the airports (and not have to pack UGGs) for going through security. And remembering to pack enough compression wear, a s well as my exercise bands, cane (never know about hills or cobblestones) and LE accessories. Maybe the cane will get airport personnel to shove a wheelchair beneath my butt and whisk me through security. (I needed the airport wheelchairs last year because of a nasty case of hip bursitis--but no real excuses, knock wood, this time).
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Melclarity - what a terrible day. So sorry. The downside of looking like superwoman is that people really don't see your daily struggles and can "forget" what you are going through, and not get it at all when it all falls apart. Big hugs to you.
Funny how we can cope for so long and then don't. I was crying on the way to chemo today, anxious about switching drugs and side effects and "newness." Not 6 hours behavioural meltdown to deal with!! Felt like a bit of a self indulgent baby, but anxiety is not rational!
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Thanks Everyone for the hugs!!! Its a shitty ride somedays!! 614 yes I remember you too are a single parent and your long hours of work. Yikes!!!
Zinny - It is so so normal! I had a major meltdown with one chemo treatment too...was so angry on the way to a treatment...I stopped and said to my daughter..you know what?? Im actually not angry with the traffic etc., Im angry because I feel helpless and having to go and do something I just didnt want to do. This particular day it took them 4 goes to find a vein, enormous pain, my eyes welled with tears by the time they found the vein and my poor daughter was upset to see me go through it and holding it all in when I really just wanted to cry.
On a good note!!! here's a picture of my daughter and I, a good friend bought tickets to a Gold Class Movie it was sheer decadence. I cannot remember when I enjoyed myself so much. We shared nachos and had a glass of champayne whilst we watched 'how to be single'. Was great!!! when we left it reminded me of the times I used to spend with my Mum, doing exactly those things!!!! get in the car, turn on the radio and immediately came on my Mums favourite song...uuugh of course I burst into tears a million emotions. So incredibly blessed to have had such a wonderful day with my daughter, but to have my Mum there like that reminding me of those days we shared...and now I was creating the same for my daughter and I. Isnt that what lifes about??? so just for today...I appreciated every second I lived in the moment.
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(((Mel))) I am so sorry about all the stress in your life. I know how hard it is to keep going when all you want is to hide under the bed cover. 614,I am sorry your son isn't getting better. I hope he's on the mend soon. Poodles, I hope you are feeling better. Sandy, I am very jealous of your upcoming trip. Sloan, what a great friend you have in moondust!! Off to bed. I finished a book this evening. The Lovely Bones, good book but a tough read. I shed a lot of tears. Brutersmom, hang in there!
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Oh Molly - I saw the movie..the lovely bones!!! very hard to watch, very sad!
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Mel, what a gorgeous pic of you and your daughter. Glad you were able to have some great girl time together.
I had my 4 month post-chemo check up with my MO today, and am signed up for a trial for Palbociclib (Ibrance). The purpose of the trial is to determine if the drug, which is now approved only for metastatic cancer, is also effective in preventing recurrence in women with early stage ER+/ HER2- cancers in conjunction with standard anti-hormone therapy. I had bloodwork, a pregnancy test (HA!) and they will need a tumor specimen. If approved, I will either get the drug, or not get the drug (participants are 50% of each) and be monitored closely with routine bloodwork for the next two years. Glad to be doing something to help further innovation in treatment, and selfishly to have someone keep an eye on me.
Thank you all for your good thoughts about my neck ultrasound on Tuesday. FINALLY got a call back from the primary care doctor this afternoon. Carotid arteries are fine, blah blah, and there are nodules on my thyroid which in the vast majority of cases are nothing but require a dedicated ultrasound. I'm feeling very high-maintenance about now, and nostalgic for when I only saw doctors twice a year.
Just wanted to share something that inspires me from my trip down to Boston today:
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Peachy, that is great you are doing a clinical trial! Let us know when your ultrasound is so we can be in your pocket.
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Peachy2 glad to hear! I go to DF too - I call it my Cancer Spa.
I'm in the middle of treatment now, I feel so taken care of there.0 -
WOW STELLAMARIS, MLP3, GRAMMY AND MOLLY50!!!
Thank you! Such caring and thoughtful replies.
I just got my oncotype today...and it's a 6!! I'm thrilled. NO CHEMO.
I was referred to another Breast Cancer group. Guess what? Same MO in the "non stellar" group at the local hospital.
I know we have to go EVERY FREAKIN' DAY so I will likely choose to see her at the Breast Center in the hospital. They seem to have a better RADS layout and support staff. She is my only real choice unless I want to drive 45 minutes one way every day. I work, and I'm sure many of us do. How we manage all this...God we are a tough bunch!
As a side note, I was on HRT for 14 years prior to my diagnosis. The day I was diagnosed (my birthday no less) the docs took away my hormone patches. Ever since I can't stop eating (craving carbs and I don't/didn't eat carbs) and I have zero interest in, you know. My poor husband...so when I was reading StellaMaris' comments about Lezitrole my heart sang. Hope I have that particular side effect!!!
Should I move over to the RADS board now? I feel like I've made friends here.
Thank you MOLLY 50, STELLAMARIS, MLP3 AND GRAMMY!!!!!!
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Fightergirl, that's what I said when I had chemo - "Off to my spa day!" The people there really are wonderful.
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Peachy, hooray for your clean carotid Doppler! And keep us posted about that Ibrance+letrozole trial for early-stage ER+/HER2- cancers. I wonder if it’s available for those who are PR+ and node-neg as well. I do dread eventually needing Ibrance because on Medicare Part D (all companies’ plans), it’s a “specialty drug” with a 33% co-pay.....and 33% of $9-15K a month is breathtaking. (And while in the donut hole, it’s 100% out of pocket). Perhaps if that trial results in it becoming standard-of-care, either the price will come down or the Part D plans will move it out of the Tier 5/“specialty” category. Were those stairs in the photo at DF?
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Sandy, WOW! I had no idea that Ibrance was so expensive. Glad to be working with Pfizer to help get it approved for more uses. This trial is expected to have 4600 participants, and the qualification doesn't mention node status. According to the paperwork, it is being conducted through Alliance Foundation Trials, in collaboration with the Breast International Group. The clinical research nurse that I met with said that for some trials Dana Farber patients are only given a small number of available slots, though this one is much more open given the size. It is a phase III trial, though not sure how many phases there are.
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As with many, many name-brand drugs still on-patent, those patients with regular insurance (not yet on Medicare), don’t pay anywhere near the “sticker price” even if not part of a clinical trial. One longtime Stage IV patient in my support group was first quoted $9K/mo but has hers paid for by Pfizer. Another, recently initially dx’ed as Stage IV, was originally quoted $15K, but her pharmacy dug up a co-pay card from Pfizer that reduced her monthly cost to $10. Some Medicare supplement plans cover some Tier 5 or specialty drugs (e.g., chemo) via Part B, but mine doesn’t. And it insists (as does even the most comprehensive Part D, Silver Scripts) that patients try the cheapest first-generation generic drug in a particular class (such as anastrazole) and have it fail (or at least be intolerable) before it will cover a newer AI such as letrozole. At least mine (Humana Enhanced) is covering 55% of generic letrozole.
Hate to get political here, but Congress is in the pharma industry’s pockets in refusing to amend Medicare to allow HHS to negotiate lower drug prices, as well as in making co-pay cards unavailable to Medicare patients. We hear a lot about “balancing budgets on the backs of the poor,” but we don’t hear very much about “maximizing the bottom line on the backs of the elderly.” And we generally tune out such talk....until we hit 65. As Lady Gaga sang about a different subject, “Till it Happens to You”......
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Randi, so happy for your low oncotype score. And you totally don't have to leave us for the "rads room". Just favorite this room and continue to drop in! And BTW, letrozole is great, but my DH is also my boy toy (14 years younger), which is incentive in itself lol
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Melclarity - so sorry about your rough day- days like that suck. I'm a teacher so I know how draining difficult students can be! I was just diagnosed with breast cancer on Monday - although I knew last week because my radiologist prepared me - I took three days off this week for appointments and to schedule appointments. I also needed some time to digest my news. Today back at work it was hard - I had a student go off along with all the other minor classroom behaviors. I felt like I just couldn't teach because my mind is focused on other things. Crazy parents at the end of the day and I was ready to leave. It sounds like at this point I will need radiation and a lumpectomy. I'll know more in the coming weeks but I think about my job and say is it the best for my mindset right now? I want to go into my treatment as relaxed and stress free as possible ( difficult for my A type personality) and I'm just trying to weigh all my opitions for work. I'm working on a keeping a positive mindset for the next few weeks while I wait for more info.
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I've been reading, and cheering everyone on. I'm amazed at how so many of you manage bc, work, kids and sending out so many frequent, supportive and thoughtful comments. Please know that I pray for healing and ever diminishing SEs for all of you.
For those struggling with your bad days, I would like to share this thought that Sloan expresses before (it really stuck with me and I do remember it when I'm having a bad day): on those days, I just try to remember that even the spirit needs rest days. (paraphrased)
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