Lumpectomy Lounge....let's talk!
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Thanks everyone for kind words and responses. I see the RO tom after my treatment so I'll discuss the pain with him. Breast pads are a good idea- thx Sandy. Have tried the Aquaphor at bedtime. Seems to sooth a bit.
Dara thinking of you as you go thru the hairloss. I'm so sorry. Hang in there. 💜
I have gotten my mom Medi-cal which took way longer than needed to bc they sent me wrong app and didn't bother telling us it was declined until my second contact...long story...fortunately I have power of atty already. It's just that everything that can go wrong has. 😁 Tried daycare and they weren't very helpful. Their hours don't coincide with my work hrs and they don't transport out our way. Would be more exhausting trying to get her there and back. Will get thru this too... Thanks everyone for listening. You all are so supportive.
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Beez- so, remembered that they "taped" my nipple every rads sessions once I let them know it was bothering me...are they taping yours? Still had trouble during and after but can't help but think the tape helped it not to be worse. HUGS!
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Hello Sisters,
OH! I almost forgot. I saw the PS today and he said the infection is all gone.Yay! I also was able to get my port appointment \ on the 26th of August, (the day before my birthday) so will be able to start my chemo on September 2nd as planned. I hope you all are well.
xoxoMichelle
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HiMyra, what a wonderful, generous idea! I just noticed you are in Los Angeles. If you ever want to meet up let me know.
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Beezaboob, I am sorry you are having trouble getting help for your mom. Is she signed up for IHSS? Sadly my dad ended up in a SNF because he couldn't get around by himself anymore and we all work. It was heartbreaking to have him spend the last two years of his life there.
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No HH they haven't mentioned taping it! I'll have to ask tomorrow. Thx
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Molly - thx but we did apply for IHSS in Jan but they mistakenly denied her in March bc they didn't tell us she had to apply for Medi-cal first...Grrr...,got all the way thru the home assessment and no one said anything until she was denied. Finally got the Medi-cal approved in June...right after my diagnosis. Then in late July IHSS sent a letter saying oops made a mistake, you do qualify but only approved her for 54:55 hrs per a month or 13 hrs a week. Better than nothing but we live out rural and I've gone thru the first list of ten people and no one wants to come out this far for such few hours. Have a 2nd list of 10 I will work on tomorrow... I also ran an ad in local community electronic connection. I found an assisted living Medi-cal waiver program in lieu of SNF but it can take up to 6 mos for state approval. I'm afraid by then she might need SNF as she's progressing quickly. She's lived with my family for almost 20 years in a little granny suite attached to our house. I'm filled with guilt for having to make this decision but we all work full time and my kids are in school full time, sports and work. Just not safe for her much longer. Nurse assessed her as level 3 assisted living. I think she's close to a 4. Hoping things come together soon. Thanks for hugs and right back to you!
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Beebazboob, you sure have had a mess trying to get help for your mother. Many people don't realize how rural parts of SD are. I'm sorry that you haven't been able to find help for you mother. I hadn't realized that there were levels associated with assisted living. Of course, DH went from home to a skilled nursing center, no assisted living in between (well, he was in the hospital then in rehab first).
And do NOT feel guilty for doing what is best for your mother. Of course it's hard and gut-wrenching but you know it is what is needed. It does no one any good if you kill yourself trying to care for her and your family. You definitely are the "sandwich" generation still caring for kids and also a parent. I don't envy you - it is difficult.
I hope you get the assistance needed and SOON!!
HUGS!
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Thanks Peggy. Sorry to hear you had to go thru that with your DH. That would be twice as hard to go thru that with a spouse. How long ago was that if you don't mind me asking.
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Beebazboob, I had been caring for DH for 4 years with less and less sleep. He had Parkinsonsome and couldn't get in or out of bed without help &went to the bathroom 4 to 6 times a night. I couldn't leave him alone. A heart attack in 2010 made things worse. Then in 2014 I was diagnosed. The boys came (tag team fashion) to care for Chuck after my surgery, even sleeping with him . My first rest in years. Not long after he had surgery to remove a cancerous kidney. Surgery went fine but he got pneumonia &was in the hospital forv3vweeks. I was doing rads at the time. He went to rehab & I realized I could not care for him at home any longerrors. We were able to qualify for Medicaid though it was tough. Chuck went into a nursing home Nov 2014.
August of 2015 he got a c.diff infection. He had a bed sore. Everything got worse. By labor day he was in the hospital from ghost 2 plus his congestive heart failure. This time his indomitable will couldn't overcome a failing body . He died Sept 21 2015.
I think that if I hadn't put him in the nursing home, I'd have been dead in 6 months. It took me 7 or 8 months after he went in to graduate from total exhaustion to really tired. So I do understand. I've walked the walk.you have to get your mother in care ASAP to keep your own health. BC is hard enough on you without everything else.
Good luck!
HUGS!
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Beebzaboob, I'm very sorry for what you're going through with your mother. Mothers + Daughters + Guilt. It's exhausting. I've had a heck of a time with my mom too since 10 a.m. on Christmas morning, it's been non-stop - somehow I fit BC into caring for her this year and, honestly, I barely remember the diagnosis, surgery and radiation - they were definitely back burner things at times when my mom was having one crisis after the other in the Spring. We're moving Mom out of her house on Thursday, so I'll be out of town again getting her set up and settled. At least my younger brother is taking the day off work on Thursday (moving day) to be available and to keep me from snapping. He doesn't live too far from the facility she's going to, so I'll stay at his house for a couple of nights - he's already promised to load the fridge with my favorite wine when we crawl back there on our knees, shells of our former selves
) It's been a stressful, stressful time - we had her in the ER once again the other day with terrible abdominal pain (maybe diverticulitis, hopefully nothing worse - she's being watched). She's gotten herself into quite the tizzy - I swear, if she doesn't drop dead before we get the pictures hung in her little apartment, I'll be amazed - no kidding. These poor movers don't know what they're in for - I'd better have a good tip ready for them at the end of the move.Honestly, all I want to do right now is share in the joy of my younger daughter heading off to her first year of university next weekend and give her my full attention, but I can't do that. so there's the resentment and then the guilt. I'll spend three days out of town with my mother getting her organized and then I'm outta there and will then be concentrating on my kids as they head off to their respective cities for school. At least my older brother will take over for those days. My brothers are helpful, but they have to be asked, which drives me bonkers. There's my little venting session. Looking after our elderly parents, or our ill spouses, is what we do - and what we do with love for them at the heart of it all - but the stress can tear us to shreds. I try my best to find humor in it all - it's self-preservation - because most of what my mother is doing right now is so ridiculous that sometimes I just have to sit down and laugh. I've mentioned before that she's almost 93 and the fact that she is still a massive control freak, even in her state, floors me. I can practically hear her shouting "I will NEVER surrender!!!". My sisters-in-law and I are currently writing a manual of what NOT to do to our children when we're elderly, lol. Hang in there - I'm sending you a hug during this very difficult stage of your life.
P.S. thanks again for the vent - I should really just keep a diary
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Hi..I am in need of advice from someone in a similar situation. I had a lumpectomy and a revision in July. My onco type is 20 so was told no chemo but I'm over the magic 18, I'm only 48 years old and while my nodes were clear I just found out there were cancer calls in lymph fluid.
Should I do chemo before radiation amd hormone therapy? My med oncologist says he'd be fine with not doing it but I don't want to be complacent and he did say the cells on the fluid 'gives.him pause'. I want to do everything i can to keep this from coming back. There is not much data for.this middle intermediate onco group!
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Myra what a great idea! I go on easy quite a bit for all sorts of things and will definitely check out your store! thanks.
Yesterday was fun. My granddaughter turned 2 and DH and I drove down to see her and her 2 brothers. She is one of the most expressive kids I know and thought you all might like a chuckle with her picture. My title is, "It's tough to be 2!" It will be great blackmail material when she's older.
Beeb, so sorry for all the struggle. It's so very hard when parents are older and you know they would never want to be that burden to our children. It's just not the way things should be!
I'm off to have my head shaved today! Talk to you all tonight. Dara
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Lmencken, Welcome to our wonderful group and we're sorry you have to be here. We are supportive, informative, welcoming, caring and funny. I can't really answer your question. Falling into that Oncotype No-Man's Land is terrible. My score was lower. I know there are ladies here who have been in your position who will be able to answer you.
HUGS!
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Grazy, like you, I went through all my BC treatments without ever thinking about them. I was totally focused on DH. I'm sure some will find that hard to believe but when you are caring for someone (especially when they require 24/7 care) you don't have time to think about anything else. I really feel for you not being able to experience all the joy of sending your daughter off to university - such a milestone. Being a "sandwich" woman has to be absolutely sh*tty. I hope you manage to survive getting your mother moved - wine HAS to help!
HUGS!
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Dara, what a darling your granddaughter is. Love that picture. I think that you'll be happier with a bald head rather than facing clumps of hair everywhere (not saying you'll be happy - just happier). Remember, you are KILLING CANCER with each chemo treatment!
HUGS!
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Hi Beebazboob, i had sore nipples from radiation. My nurse told me to use polysporin in addition to the glaxo cream my radiologist recommended. it created a barrier between the nipple and clothing and worked like a charm. be generous with it. I applied it as soon as i was in the change room after treatment and then before i went to bed and when i woke up. I don't know if you are already doing this, but be super gentle cleaning the area when in the shower. Hope this helped. C
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Imenchken, I was just like you, but I am older. From the beginning, I was told I'd just need a lx and then radiation. As you see with my signature, I had no positive nodes and tumor was early stage and under 2 cm. People on this site know the agony I went through waiting for all the test results. My oncotype came back as 20 also. My MO laid out my options and I had all but decided AGAINST chemo when my MO requested a different test, Prosigna, which City of Hope has found very effective in fine tuning the intermediate once scores. Others have also requested the MammoPrint test. I worried about the added time to get yet more results back, but wanted to get this decision right. I was 99.9% sure I would go straight to radiation, but was shocked when y Prosigna came back that I am high risk for recurrence. The decision was made and I'm now going through chemo and then will do rads after that. It's definitely not what I nor my doctors expected, but I just don't want to look back and say I wish I had tried..." Chemo is certainly not fun, but nothing what I expected either. My oncotype didn't give me a really accurate percentage reduced risk factor. When I was evaluating options, without Prosigna, it was only a 1%-2% change. It was the additional test that changed the reduction to double digits. Good luck, I know what an agonizing decision it is. Feel free to even message me if you'd rather or have other questions. Dara
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Beebazboo, I agree with the Polysporin (do you have that in the US? Similar to Neosporin) and Glaxal Base Cream - that cream is so thick and soothing - seems all Canadian oncs recommend it.
Dara, your adorable, expressive little granddaughter reminds me of my younger one when she was two, now 18. lol
Imenchken, we had similar pathology and onco scores, I PM'd you.
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Beebaz, I have not been in your shoes (yet), but I do feel that I have some shared caregiving experience. I have a severely mentally handicapped child who is fully dependent on others for everything. He can walk, but is unsteady so he needs constant supervision. We cared for him at home until he was 17, when it finally just became impossible. By that time my DH was fully disabled with heart & lung disease and I had developed some chronic illnesses which made caring for a big tall man-child very difficult. The hardest thing I ever did was sign the papers placing Christian with another family. I love them. They are younger and stronger than we are. Christian has a wonderful life with them and we see him as often as we can. But it still does little to assuage the guilt and sadness that I bear because as his MOM I can no longer keep him safe. He's 6'3"--a full foot taller than me. He wears diapers, needs bathing and shaving, needs feeding. He walks about 5 miles a day and I just cannot keep up with my bad arthritis. So he lives about 45 min away and we see him when we can, about 1-2 times a month.
Sometimes we just have to say enough is enough. When it comes to keeping our loved ones safe, sometimes we have to make the more difficult choice to have others step in. I don't often give in to the feelings of inadequacy and guilt because it would eat me alive. I try not to look too far into the future because it fills me with fear. I took at today, and maybe 4 months into the future. Long enough to plan a holiday or vacation with Christian, but no more. And thankfully, he lives in the present.
I know it's different with a parent. I have an 82yo mother who is becoming more and more frail. Her health and stamina are slowly declining. She lives alone in a small apartment over 400 miles away from me. I feel guilty all the time that I am not there to help her go to the doctor, provided a few good meals, or just take her to the movies or church. I see in the not too distant future a time when my mother will no longer be with us, so I try to go down there at least once a month. Between trying to see Christian and see my mother and take care of my husband and do my job and deal with my own health issues, it's overwhelming.
My heart goes out to you. I get it. I really do.
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There are so many of us here coping with multiple issues, not only BC. I'm amazed at the strength displayed here. None of it is easy but we slog through it as best we can. And as Poodles, said, we can't look back and second guess our decisions for either loved ones or our cancer treatments. We do what we have to do and make the choices with the best information available.
HUGS!
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lmencken....I was in the dreaded middle range too (24). I was 59 at time of diagnosis. I went with my ONC's recommendation of no chemo. The benefits did not out weigh the risks in his opinion. Sorry there is no clear answer. It seems every ONC has there own protocol and in the end leaves the decision up to the patient. Wishing you best of luck in your decision.
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Wow I need a nap after reading through what I've missed!!!!
That blue dye sure did sting going in. Does anyone else still have the blue smurf boob from the dye? I had my surgery in December and still have about a nickel size of blue. I hope it goes away someday!!!
Off to get my dog from the vet. Had his teeth cleaned and extractions. Poor little guy. Lots of cuddling tonight
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Hi Karen - I had the radioactive tracer injection done before surgery (along with the wire localization) in the Nuclear Medicine suite, and then the blue dye was injected by my BS when I was anesthetized in the OR. I know what you mean about the dye lingering in your skin!! My surgery was in February and just now, I'm noticing that it finally fading away - there's just the slightest discoloration left. My BS did warn me that it would last for a long time, but I didn't realize he meant months and months!! I'm so glad that I look "normal" again! I wonder if the blue dye in addition to the radioactive tracer is more of Canadian thing because I don't know of many American women who got it.
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lmencken,
I also had an oncotype of 20. the first MO I saw said chemo wasn't an option. I start chemo Thursday. Needless to say, I sought a 2nd opinion. I felt I needed to do everything I could to battle this, and for me, chemo was a part of the battle. I also needed an MO who allowed me to be the navigator in my disease. It really is up to you. It's personal for us all. I thought long and hard about my decision, as I'm sure each and every one of us have, and you will figure out what's right for you in your journey.There is no wrong or right answer, and as we all know, it isn't black or white- it's extremely complicated, and we have to do our homework, research, and a whole lot of soul searching to determine what choices each of us will make. Many people with an oncotype of 20 will not choose the route I did. Many think it isn't necessary, while I choose to use every weapon in my arsenal to attack and defeat cancer- but like I said it's very personal. Risk vs. Benefit....I'm told that's what it's all about with bc....It really isn't a question anyone else can answer for you, and there are risks either way as far as I'm concerned. Good luck with whatever you decide to do. This is a great place for support and encouragement.
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Kacey, my first MO was a bozo who all but patted me on the head before he sent me on my way with a prescription for Arimidex. I was concerned because my biopsy came back as PR- with a Onc of 23; everything I had researched led me to believe that I was dealing with a more aggressive cancer, more similar to TN than ER+PR+. Lucky for me I found another MO who took one look at my Oncotype, PR- status, family history, and gene mutations and immediately called for chemo, BMX, AI,and total hyst.
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There is life after breast cancer. We went ocean kayaking today. Tip #101 that I posted on FaceBook: Stay perpendicular to the wave on the way in or you're screwed. But, the upside is that I found my sunglasses in tbe surf!
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Way to go, Sloan! Sounds like you had a marvelous time. Glad you found your sunglasses
HUGS!
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yes, I learned the tip about perpendicular to the surf the hard way the first time I tried kayak surfing! :-)
Octogirl
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Dara - Your granddaughter is adorable. Sure wish my family had produced some girls. I have two cute grandsons, but unfortunately they won't wear dresses, lol!! I truly admire your attitude as you continue chemo. It's not easy....I admire your strength and positive perspective.
Imencken - Dara, Kacey and Poodles have reinforced the value of a second opinion as well as "trusting your "informed" gut. Be methodical and don't let fear determine chemo/no chemo. It is seldom as bad as you fear and there is great peace in doing all you have determined is necessary. Wishing you peace in your decision.
Karen - My blue dye procedure was similar to Grazy's. Am I the only one who thought the "smurf pee" was odder than the "smurf boob"??
Grazy - my thoughts and wished for a peaceful transition in moving your mom. I can only imagine the stress. Yes, wine is your friend as well as your sense of humor should it surface. My mom's situation was different as she is the one who came to me and told me she thought she should move into independent living. She's been there 6 years now. Not sure if your mom is moving into independent living or the like...or if it is just a downsizing. Still, there is a transition period. The upside is that if she is in a in depended or skilled nursing facility she will soon meet many people in similar situations and there is a lot of comfort in numbers. Most everyone misses their home, the "stuff" they couldn't bring with them, dare I say their "youth". Oh yeah, and home cooking. What they eventually gain is a sense of community of people in the same boat. Some are crazy, some aren't very nice....but most are terrific. Wishing your mother early encounters with the lovely ones if she is heading to a retirement facility.
Have to share a funny story about my soon-to-be 94 yer old mom who visited earlier this month. She is actually on Facebook and loves her iPad. She forgot hers, so I gave her mine to "play with" while she was here. She, my sister and I were sitting in the backyard (with wine) when mom mentioned I had just received a "notification". What kind?, I asked. "Not sure"she replied. Shortly after she was chuckling and started to tell a story she had found in the Internet. That was the point I realized she was unwittingly reading my e-mail! Somehow she had wondered off of Yahoo News or whatever and was now in the realm of the personal. I texted my sister (sitting next to me) "Mom is reading my e-mail, lol" We had a good laugh later after mom went to bed. Seriously, this is the stuff legends are made of. For those of you whose parentsare old but still pretty sharp, an IPad mini is a fantastic gift. Easy to use and my mom says it makes her feel so connected to all of the family members who are separated by distance. She gets all of her news and magazines online (along with my e-mail). It is a welcome distraction from the mundane. Definitely one of her favorite things.
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