Anyone starting chemo August 2016?
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Hi Ladies. I am so encouraged by all the recent posts. Sounds like so many of you are getting past some major issues. Dara, I'm glad you are finally on the road to recovery. Cali, I am trying too... I'm stuck at 12 lbs lost, but hanging in there. It has never been this difficult to lose weight before. Stupid menopause... LOL.
Lyn, I love that you passed the anniversary with no fanfare. Moving on!
AJB, I remember appreciating the ones who were on the other side posting encouragement. I find myself wanting to do that, but also I am avoiding it. I think I don't want to get into those boards and be reminded of everything. I need to suck it up and do it anyway... 2 friends of mine were recently diagnosed. One stage 1 and one stage 3. Both mid 40's.
I have been on a keto, inflammation reducing diet to try to get past my joint pain. It is helping some, but I still feel so sore all the time. My tailbone does not seem to be recovering or getting worse, so I am thinking it is part of the whole sore joints thing.
I have been incredibly busy lately getting Jim's parent's estate squared away. It is such an overwhelming task. I think we are nearly done. Probably about 10% of the things to work out whether to keep, sell, or donate.
My son is home from college and the world feels normal again. My daughter turned 16 and is now ready to drive everywhere (I'm not quite as ready for that...) Both are looking for summer jobs. I think Ashley might be going to Dairy Queen.
Hope you all have a great weekend! Talk to you all again soon!
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Kechla, normalcy is underrated, right? I periodically glance through the Active Topics or Triple Negative topics to offer encouragement or information. I don't visit the chemo topics often because I have forgotten so much of what happened in terms of sharing my experiences to help those currently in treatment. Sometimes, an update will show up in my Facebook memories and I'm like, "Oh yeah, I'd forgotten about that complication, delay or snafu." I would blame a selective memory as a protective mechanism, but, honestly, my memory just sucks big time.
I know a lot a lot of people have had success with the Keto diet. Good luck!
Lyn
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Happy Thursday- sorry it took so long to get back on here! Still dealing with my daughter's headaches...she's missed basically the month of May of school. This past week had been better, but they were also on an alternate schedule going later in the am. This week started ok and then back to home Tues and yesterday. So yesterday I was in an email conversation with the neurologist about going to the ER to try and break it. They give a IV "cocktail". The neuro said we could try the cocktail orally at home, but I said no- lets do the ER thing and try and get it done lol. Daughter was in tears, partly she didn't want to go, nerves, frustrated as nothing seems to work so why bother. But she rallied. For an ER visit I thought it was fairly fast at about 4 hours! The neuro told me to have them call her when we were there. But you always get the Dr, and in this case a PA going- ok this is what we will do, and asking questions that don't apply lol "did you eat something new?" Um lady look at the 4 page document I have typed up and THEN ask a question lol.
What I love about my daughters neurologist is literally we were having a back and forth conversation the whole time via email. At one point she was like- ok, the office is closing for lunch and I need to go get my daughter. She writes "I trust you empirically". I'm thinking- what are we going to do in the hospital? Run around like lunatics? I got stuck on the sentence, and then it hits me lol, she then gives me her cell # for the hospital to call her on haha. ok get it now. I track down that PA and since I'm bugging her so much to call she does. When she comes back we have a whole new nice demeanor! She starts out by saying your doctor is soooo nice! Oh boy lol. She then said they're on the same page with what to do and we get going. The good news is that cocktail broke her headache within an hour! Now I'm waiting to see if it's still gone this morning and I know the stress/worry about it coming back doesn't help her. I just need her at school for literally 1 more week. At this point I don't care about her grades, just want her to finish.
Speaking of stress- Lyn I did fine with the dog lol. I ran her to 2 vet visits, leaving with plenty of time to not stress about being late. At each office, I asked that someone help her back in the car- and what do they do, but send out the little female tech who struggled as much as I do so not sure how helpful that really was lol. I agree Lyn- I love having animals, but will take a break after this. I love big dogs, but yeah- if we do another one down the line it needs to be able to be picked up.
Kechla- my 16 year old still needs to be driven to Dairy Queen- I literally think I had gone there right before reading your post lol. She hasn't been able to start the permit process yet, but is in no hurry with how bad folks drive. Is your joint pain from an AI? I can't remember. I agree menopause stinks....I keep re-starting exercise, and then life hits again and I'm back at doing nothing but exhausted lol.
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Ajbclan, I'm glad the ER cocktail helped your daughter's headache, but how terrible that this daunting issue continues. I feel so bad for her and know it's difficult for you to see her suffer. Do the doctors have suggestions as far as other specialists you might consult? I think you tried acupuncture, right?
Hmm, I'm suddenly craving a very healthy DQ steak finger basket with gravy. My mom couldn't wait until I got my driving permit. At first, it was exciting to drive to the grocery store, but after 8 bazillion trips, it kinda lost its charm. I grew up in a ranching area where we could get our permit at age 14 although we could only drive from 7:00 AM to 7:00 PM. That allowed the kids living in rural areas to get to and from school.
Lyn
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I love your stories Lyn! I think you need to write, blog or something! So fun to be able to drive young and have that freedom to roam.
Some of it with my daughter is stress/anxiety right now- drives the headache right up with finals this week. My husband has found his nitch in all of this and getting her mind off of things and making her laugh. Thank god lol. I just get stuck in mom roll- water, nutrition, bath, meditation (no!).
We are prepping for our first "real" vacation this week...of course i have a binder for the animal/house sitters! So just trying to get all the little things done.
Oh side laugh- my insurance denied an appt for the first time. The breast surgeon has me coming in every 6 mos, along with the oncologist- so they said no to the BS appt. Which I guess isn't a big deal, but funny I don't ever get that!
Hope you all are well, and those in Calif are staying cool!
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Lyn ... You are so funny! I agree with you the negatives did out way the positives except being alive is a great big bonus and meeting y'all has been my blessing. I'm so happy I have been able to walk through with others in my life during their cancer battle now with greater understanding of what's going on but each one has their own story.
My life now is a bit upside down. My daughter and her 2 girls have moved in with us. We are helping her as she struggles through finishing out her school year as a teacher and a student just finishing her masters program. We have had to get restraining orders and police involved so our house has been hopping. Did I mention we had house guests through most of the ugly stuff too. Nothing like airing your dirty laundry out for the world to see. We are here for the girls the best we can be
Hugs
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Ajbclan & Cali, you're so sweet. thank you for your kind comments.
Ajbclan, I hope the vacation is / was fabulous. I look forward to reading the highlights. it sounds like you and your husband make a great team in supporting your daughter with her health challenges. it's weird that the insurance denied your breast surgeon visit. I don't see mine anymore, but that's my choice.
Cali, ditto on the being alive as well as appreciating the friendships we've formed here with women we've never met in person! 💗
Ohmigosh, has your plate been full! I feel so bad for your daughter trying to work and complete her degree while dealing with a threatening spouse. It must be excruciating watching the pain this causes your daughter and the granddaughters and it undoubtedly takes a heavy toll on you and your husband as well. I can't imagine trying to entertain houseguests in the midst of that chaos. I award you the family poop badge of courage!
Lyn
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Lyn .... Thank you I needed that ... family poop badge of couragemade me laugh! Court date is July 2nd so we pray.
I had my annual mammogram this morning. They had me wait for the doctor to check. Then they said he saw something suspicious on the right side so wanted to do an ultra sound. Gave me a bit of a scare but all was well. Yay!!
Hope y'all are doing good.
Hugs
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YIKES, Cali! We do NOT need that "something suspicious" nonsense in our lives, dang it! I'm glad that the ultrasound provided reassurance that all is well.
My 12-week LiveStrong free YMCA membership is drawing to a close. I found out that they offer a 20% StayStrong discount on top of the old fart discount so I will likely continue. There are workout facilities closer to me, but I really like the people at the Y and they have some kind of Active Older Adult class every weekday. I wish they had a pool though. I'm trying to work the aerobic stuff more; specifically, the treadmill and recumbent bike. The regular exercise bikes look fancier, but my private parts would undoubtedly rebel against having my chubby self perched atop those smallish seats. Chair Yoga has really helped my encapsulated shoulder. Namaste!
Lyn
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Lyn I love that you're doing the Y. I've looked into some around me, funny checking on the pool piece too as my husband swims (he hates it, but with his broken body not much choice). Nothing super close to us and you know any excuse not to go lol.
Cali- what the heck! Ok so can we assume the Dr came in and gave you the all clear? I'm so sorry for the scary situation with your family! Why do we "think" we just have to get through the first year with our babies and our worries stop. They never do, but that's too much. Please don't worry about airing your laundry. We ALL have it in our families....so I'm sure whoever was with you has something or someone in their own family and they can relate. Please keep us posted....lots of prayers as the court date comes closer. I know that restraining orders are helpful but doesn't take the fear completely away.
One goal for me was to find a place to stay with a view. I think I accomplished that lol. We had a condo on Maui, no fancy resort- but didn't need it with this view. My family we are kind of home bodies....so we did hang out here a lot. My daughter did struggle a few days with her migraine, and also some teen "moments" so it was nice to have this. Overall it was a great trip and I'm thankful we did it. Oh....we snorkeled just within walking distance of our place (there were other "better" locations, but always busy and we couldn't park and just gave up lol). At first putting all the garb on and feeling ridiculous trying to walk into the water with flippers on, I was already thinking forget it. But once in the water I was in awe and so grateful (I think we are always more grateful after this BC crap and just getting older?!!). I felt like I was swimming in a fish tank! It was amazing...and we got to see turtles! I'll try and see if I can add a video link at some point. Kelly
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Hi all. Belated Happy 4th! I had my yearly visit with my surgeon, mammo, ultra sound, labs, etc on the 2nd! Things are looking really good. I do have to go back for a breast MRI as the nipple on the breast that had surgery and radiation has gone into permanent hiding! I told my surgeon I have one "In-y" and one "out-y" She isn't really worried but wants to be completely safe which I'm good with. Also found that my thyroid is quite high, possibly also from radiation. I'll be seeing the endocrinologist soon. Just glad (and can't quite believe) that most of us are almost 3 years out already. And remember we all had a hard time imagining the chemo and effects would ever end. Hope all is well this summer. I worry that we haven't heard from Annie in such a long time. I continue to think of all the friends on this site who helped me through such a difficult time. Hugs to all of you! Dara
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Wowzer, Kelly, what an extraordinary view! I can imagine my blood pressure falling just looking at the sea. Ommmm...
Dara, great news in general, but what's up with that independent nipple? Mine are fairly symmetrical, but a full inch above where they should live. When it comes to mature bosoms, perky is usually a good thing, but these gals threaten to go on an unauthorized walkabout so I'm going to be limited when it comes to swimsuits and even some modest tops give me pause. I've heard that radiation can provoke thyroid issues. Keep us posted.
Cali, how's it going? My wish for you would be a calm, drama-free summer. You've had so much going on.
Dara, I think we all share your concern about Annie. I wish she would surprise us all with a photo of Josie. 💜
Lyn
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Morning Ladies 💗
Lyn...so proud of you for your exercising and keeping it up. If you find a place and people you are comfortable with stick with it. I love how you share your exercise experience.
Kelly...that view is fantastic. I think Maui would be an enjoyable visit no matter how you spend your time. Glad your whole family enjoyed it.
Dara..so good to hear your check up all went well besides the independent nipple as Lyn puts it. I found radiation has a way of remodeling our boobs inside or out. Mine still weighs more than the other one.
Just got back from my annual visit to my parents place in Montana. Usually I enjoy it but hated leaving my daughter and the mess with her ex... My hubby went to court with her. The judge kept the restraining order and custody with her and his attorney postponed everything till the 30th of this month. So all is good for now.
Hugs
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Cali, so sorry your daughter is having to go through all this! I went through this with a friend, and it's also just so difficult with all the postponements! She's lucky to are close enough to be of support!
Lyn, I know it might have been a typo but love the image of independent nipples! Gosh, if yours keep going, you may have two on your shoulders lol. I don't think I've ever been in Montana, but everyone I know says it's so beautiful. Someday...
Is anyone taking letrozole or femara? I have such a time with excessive sweating when I get hot (and living in Riverside sure doesn't help any!) I go to the studio and sweat literally drips into my eyes and my hair is plastered to my head. It sure is true that cancer is the gift that keeps on giving!
Hope all are enjoying summer! Dara
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Hi Cali- I realized it's the 30th so I'm hopeful your family gets some answers today and possible peace. I hate the idea of always having to look over your shoulder....safety and that worry that comes with it definitely takes a toll. It seems like so many people head to Montana in the summer, and the photos are always breathtaking. Would love to see it myself!
Dara- I'm on generic Arimidex if I spelled it correctly lol. Moved from Tamoxifen back in Dec I guess it was. Definitely have worse joint pain. I take claritin daily as one of the Arimidex boards talked about it here. I actually saw my oncologist yesterday for a check up. Finally my blood work is normal enough that i don't need it for the next check. Which I'm happy with as the gal was literally milking my vein trying to get enough out! I had like 36-40ish oz of water that day- think I'm a pro after all the chemo lol....so not sure what that was. I'm also getting signs of "trigger finger" in my thumb. Seems to be typical. And lady issues that arimidex basically adds on top of menopause. Being a man seems so much easier lol.
Lyn you must be working out a lot and unable to post
Hope all is well there.We're basically hitting 3 years ladies! I just stopped a gal in my office- wearing a scarf on her head. I asked her if she didn't mind if I asked- chemo? yep- this 40 something woman had uterine, cervical, and ovarian cancer! Geez! Of course she just finished her last chemo and showed me her head and was worried about her hair growing back in. So I pulled on mine and told her it will.
Kelly/Kechla- hope all is well there!
I'm hoping some of our other buddies just even check in and say hi this month! Would love to hear how everyone is doing. Annie- you are always in our thoughts!
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Morning Ladies! It is hard to believe it has been 3 years since this "friendship" began. You ladies were my greatest support through my worst. Who else could you discuss the Big D & the Big C with?? I have been so surprised with how many young moms at the elementary school I work at have had cancer. I have tried to be helpful and supportive through their treatments. I guess that is something we can do for sure support others.
Well the court date came and my daughters ex's attorney was a no show so the judge ordered they all return this Tuesday the 6th... We pray there will be some decisions made and they are in Ashley's favor.
Hugs
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As nasty as "The Big C" diagnosis is for anyone, it's sad how many younger people battle the disease. Ohmigosh, Ajbclan, uterine, cervical, AND ovarian cancer in her 40s? How terrible! Cali, I hope that all the young mothers at your school remain healthy for many decades to come.
Cali, I hate to hear that you don't have a final resolution in your daughter's favor yet, but hope the delay is worth the wait. What an anxious time for you and yours. Please keep us posted.
Dara, not a mistype on the independent nipple...I was think of your nipple defying the norm and taking its own path. I joke about this stuff, but, honestly, I'm concerned about you. I'm sure you and your doctor will be monitoring the situation carefully. I misspoke when I said my nipples are an inch about where they should be. Make it two inches. These bad boys are practically nestled under my armpits. =:-( Speaking of pits, I'm a total sweat hog and don't take any hormone stuff.
Ajbclan, I wish I could say that I've been quiet because of the hours spent working out! A combination of being of "mature" vintage (aka older than dirt) and genetics gifted me with droopy eyelids. It was uncomfortable and when I smiled, my chubby cheeks and the droopy lids left me with a wee field of vision. Although I would have gone for a mini-facelift if I had the disposable income, my insurance helped pay to get rid of some excess skin. The surgery meant no lifting more than 5 pounds, no bending over and no activity that would elevate my heart rate or blood pressure so I've been a total couch potato. Between Amazon Prime freebies and audiobooks checked out of the local library, I did a lot of listening to novellas while icing my eyes and Netflix binge watching when my eyes were open. I still have some swelling and bruising, but think the results will be nice. It's not as dramatic as for some folks due to my low (caveman?) brow bone, but I can already tell that I won't have that constant pushing sensation. I won't do everything in chair yoga for a while, but am going to explore options at our little senior center since my free time at the Y has expired. Our tiny fitness center only has two treadmills and a single recumbent bike so I'll probably spring for the Y membership if I find myself waiting around for equipment.
Love y'all!
Lyn
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Hi all, just a quick update. I had my great MRI on Friday and saw my surgeon again today. No bad news, but still a question. Mri found two small areas of "focus" one 2mm and one 3mm in the left breast that had the lumpectomy. They are most likely (and hopefully) benign but will repeat an MRI in 6 months. It's like two little clusters of cells that may be nothing but they will watch closely. I'm not worried and just moving forward. also found "debris" in the breast. It cracks me up how they word things.
On a good note, they talked to me about their survivorship clinic which once you hit 3 years you transition to a survivor status but are still monitored closely but it offers help and counseling with other things as well. I don't have any deep connection with my existing oncologist so would be perfectly happy to switch. My Onc seems about 12 and isn't especially personable.
Hope you all are surviving the heat this summer. I find I just want to stay where it's air conditioned. I was at my daughters in Carlsbad yesterday and we went and sat on the beach for a couple of hours. It was overcast and about 70 and I was almost cold! It was pure heaven! Cali, I hope you especially aren't in too bad of a heat spot. I can't believe people are already going back to school. Where did summer go?
Take care all, thinking great thoughts for everyone. Dara
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Hello. Nice to hear from you all. Summer is flying by. We went on a nice trip up to Toronto/Niagara Falls with the kids a couple weeks ago. Very beautiful up there. Niagara Falls were incredible, but I was underwhelmed by the town surrounding them.
I've still been struggling with joint and tailbone pain, so my nurse suggested I go off the tamoxifen for a month or so to see if it is that or something else. It has been almost 4 weeks and still no relief, so now pretty sure it is not caused by the medicine. I am starting a gut health diet this weekend. It is a 5 week meal plan that aims at healing the microbiome. I have struggled with digestive issues in the past and some of the issues I have (headaches/joint pain) can be caused by leaky gut. Hoping to see some improvement. I will let you know. The diet utilizes a few supplements, but mostly just has very specific food options that are all the superfoods and a lot of fermented food. Also excludes many foods that can be stressors. Hopefully I can stay on track for 5 weeks. I'll let you know how it goes. If this doesn't work, then probably need to see my general doc to see what the deal is... Anyway, since the joint pain is likely not related to the medicine, I think the plan is to move me to an AI, so I will probably start that in a couple weeks. I'm not really looking forward to that.
Dara - keeping my fingers crossed that nothing progresses on your scans. VLH, good for you on getting your eyelids fixed. My mom did it and was very pleased with the results. Cali, hope your daughter gets some resolution soon. The waiting has to be so stressful. ABJ, Love your Maui picture. What an amazing view!! interesting about the claritin. I took that during chemo to help with the bone pain from Neulasta. Do you find that it works to reduce the joint pain?
So, on a different subject, about a year ago I got hearing aids. I have had bad hearing since I was a teenager. I've had 4 surgeries on my ears to improve it, (which did work), but now with time, it has deteriorated again. Anyway, I decided to take a shower with them on and they started to not work very well.
Luckily they are still under warranty, even for boneheaded mistakes like mine, but I had to turn them in yesterday and wait a week and a half to get them back. I don't think I realized how much they had changed my life, but now that I do not have them, I feel so much more disconnected from everyone since I only hear about 50% of what is said. Makes me appreciate how useful they are!! Also, the new technology is really cool. They sync with my phone and I can use them to stream sound from my phone (like wireless headphones.) Also, I can adjust the sound with my phone if we are in different environments. If any of you or anyone you know is considering them, I think the technology has become incredible in the past couple years. I highly recommend (mine are ReSound)!Kids are keeping busy. Adam will be heading back to ISU soon and Ashley is busy with Marching band. Today, she got her wisdom teeth out and was quite the character on the ride home.
Last tidbit, I am moving into a new position at work (actually, just taking on some additional responsibilities). I am very excited about it but also feeling a bit overwhelmed. Work in general has been extremely busy as we are closing 1 of our manufacturing plants and moving it to a new plant that we are now building. Even with the stress, it is exciting to be doing something new.
Hope you all are enjoying the summer. Talk to you soon!
Kelly
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Morning! Hope this finds y'all doing well. We have had some cooler days which was nice since our air conditioner was not working right...thankful it seems to be fixed since the heat is returning today... Hello 100's again!! We also had a fun plumbing problem ...fun times!!
Dara..."Debris" in the breast is an interesting term. I agree that every question they have regarding the breast area brings on some worry.
Kelly.... I have Niagara Falls on my bucket list. I have had digestive troubles for years. Since my Type 2 diabetes diagnosis in January I have cut out most sugar and carbs which has helped me so much. Plus I walk each day till it's too hot. I guess we all know now hearing aides don't need to take a shower... Good luck with your new position.
Lyn... Glad your lids were lifted.... I want to do that to my sagging lids. I wonder how much down time I will need.
My daughter's court day went well. They kept the restraining order for her and supervised visits for the girls once a week for 3 hours at the park. Guess who is supervising?? Yep...me!! I start back at work this week. Ugh...I hope to retire in 2020.
Hugs
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Dara, debris? Good gravy, that's a new one. Even knowing the spots are very likely benign, any oddities are worrisome to the those of us who've walked this path. Please keep us posted and tell us about the survivorship clinic experience once you get set up.
Kechla, I'm glad that you got to visit Niagara Falls. The darned hormone-altering treatments seem to cause a ton of chronic pain issues. Yes, please let us know if the changes in diet prove helpful. I can imagine how easy it is to step into the shower with their hearing aids in. I'm glad the company is replacing them for you. I hate going to crowded restaurants because I have trouble hearing half the conversation as you mentioned. The concept of "background" music has really gotten out of hand in most places, which exacerbates the problem for me. Did Ashley make you sign a vow that you wouldn't post her wisdom teeth video online? 😁 Congratulations and good luck with the new position at work!
Cali, I've glad the restraining order will remain in place. Supervising visit sounds stressful though. I'm sorry your family must deal with this issue. It must be nice knowing that retirement is only a year away. I enjoy having a more personal time, but hate the financial impact that losing my career in my early 40s has had. I still remember my sweet friend at work innocently saying how lucky I was to be leaving. Amazingly, I didn't feel lucky knowing that I was facing incurable chronic pain, fatigue and constant stress about money for the rest of my life. I know what she meant and there was no ill intent, but ouch!
Regarding the eyelid surgery, the downtime depends on your job. I shared the limitations my surgeon imposes in my earlier note so that might be a general guideline? I had time to prepare, setting things I needed at counter level, putting plenty of dog food on the high grooming table and raising the water bowl on a box with the non-slip rug to keep it in place. The chair yoga that I've been doing recently helped in terms of being able to squat down fairly low without bending over and I had grabbers left over from back when I had hip replacement surgery over 10 years ago. Yes, having those grabbers handy is the kinda thing that feeds into my packrat mentality. Tee hee! I'm in full agreement on wanting to be in the AC 24/7. The triple digit heat is making it challenging for me to get back to my exercise plan now that my surgeon has cleared me to return.
You know me… I can't do anything without a funky complication or outcome and this is no exception. I'm having some mildly blurred vision, which is fairly rare this far out from surgery. I suspect that the fact that I had radial keratotomy (sp?) surgery and have tons of astigmatism has contributed to the side effect. My surgeon has a "less is more" approach and the results are very natural so I can't fault her. I'll probably have cataract surgery later this year so there will be some tweaking to the lenses at that time anyway. I feel totally confident driving and in daily life. It's that smaller print or, say, captions on the TV have a slight halo around the letters so that I find myself moving my head often trying to find the sweet spot on my progressive lenses. Now if I could just afford to get rid of the suitcases living under my newly refreshed eyes!
Annie, you remain in our thoughts. 💝
Lyn
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Howdy, Ladies! I thought I'd pop in to see how everyone is doing. Nothing exciting happening with me. I still have some minor fuzziness in my vision nearly two months after my eyelid surgery, but I hope that can be corrected when I eventually have cataract surgery. I don't know quite when to schedule that since we'll be heading into the holidays when I finish a work assignment and I worry about a doctor being on vacation if there's an emergency. It's like I can read text readily, but the letters just aren't as crisp as pre-surgery.
Cali, I feel your pain on the a/c stuff. Money I would have rather spent replacing my disgusting carpet, getting a lawn sprinkler system or, be still my heart, taking my first vacation since 1996 went to replacing my a/c system this month. Good air conditioning is hardly optional with heat indexes still close to 100 degrees in mid-September here so I had to suck it up and make the tough adulting choices once again.
Kechla, are you finding the new diet helpful and tolerable?
Lyn
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Hello there! Fall is in the air and we have cooled off a bit in Central Cali.
I hope you all are well.
Lyn.. I am a little worried that you still have some blurry vision. I sure hope the cataract procedure helps with that. I want to get my eyelids in shape ... One day!!
I have something strange my hair after chemo was better than ever but suddenly through the summer I started losing lots of hair...lots... I have some thinning areas on my scalp and I am afraid I will have to pull out those wigs I never wore!! Have ever heard of this
Hugs 😘
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Hi all, Happy 1st Day of Fall on Monday! I'm so happy there is a small but mighty group of us that still check in here once in a while! I'm hanging in with everything. I've just ignored any breast issues and will wait till the next MRI to think about it! I have my next bone density scan next month and will be interested in what it shows. I have so much pain in my back (and hip and foot!!! lol) but I try telling myself I'm just a walking mess! My sister says we all need to be like a shark and just keep moving! I try not to let things interfere with my pottery or what I want to do, where a back support when I throw etc. It really seems like we've all done our share and should be able to just skate through now!
Cali, my hair started thinning this summer also! My hairdresser agrees, it was so thick when it grew back, but now I really have to work at it to style so it doesn't look too thin. I'm still on letrozole (femarra) and I know that's one of the side effects. The gift that keeps on giving!
I'm so looking forward to cooler temps. This past summer has been so hot here, but at least low humidity. I have an art festival I'm participating in Nov. 2, so hope things are nice and cool, and I'm able to get enough pieces done before then.
Kelly, I'll be interested in seeing how your bio diet does. I don't think my joint pain is due to medicine, but maybe should try something like you're doing.
Have a good week, Dara (the one with "debris" in her breast! I keep picturing chunks of concrete piled up!)
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Hi Everyone! I'm sorry I haven't posted....I'll get the emails of your posts and the intent is there and then I'm tired lol. So I just re-read everything but I know I won't remember to address all that you wrote!
Cali- I'm getting tired of the heat, which is not like me usually lol. I need to hover maybe around high 70's low 80's. I'm so glad you got the court stuff settled.
Kechla/Kelly- yes- would love to hear how the new diet is working for you. So interesting about the hearing aides and the technology!
Lyn- I'd love to have my eyes lifted, but interestingly like you were commenting- when I talked to the PS he said my brow bones I think are lower too and it wouldn't be as noticeable as I might want. Plus that would be some $$ lol.
Dara- it's so frustrating all of the stuff our bodies are doing! I feel like in the past, younger (not that long ago lol) you'd feel a pain or discomfort and could make it go away. This chronic crap is annoying.
I went to the primary care dr this week for my joint pain. I've had some in my knees, and my feet are stiff and sore getting up in the am which the MO said probably would happen on the AI. But even typing this is bothering my hands. Sometime in the summer I woke up with my thumb locking up and both hands stiff and painful. It's constant but gets better during the day. Primary told me its so common they even have a diagnosis- Armidex induced arthritis. Great. So I'm going to start some PT so I can try stay ahead of it. I've got to get exercise into my regular routine, i'm really hot and cold on it. But it really seems to be the answer for all of this aging crap.
Happy Sunday to you all! Kelly
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Morning Ladies...it is another beautiful fall day here! Of course my idea of great in the low 80's is another's heat wave... Hope y'all are well.
Dara... You and your debris still make me chuckle. After our chemo nightmare even skinny hair is good right? Glad you are doing well.
Kelly....good to hear from you and hope the PT is helping you and that it is tolerable.
Lyn...hope you are doing well?
I have my 6th month check with oncologist next week the 23rd... Yay me!!
I keep our little group in my thoughts and prayers always.
Hugs 😘
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Aarrggh! I forgot to do a constant copy-and-save maneuver and my frustrating Fire tablet just destroyed my lengthy post addressing each of you individually so forgive me for going with a briefer group check-in.
Cali, good luck at your appointment. I have mine on Friday. I was massaging my sore shoulder & neck muscles and encountered a small lump. I have tons of lumpy knots all over my body so it's probably nothing, but I think there are lymph nodes in that area so, of course, I'm a bit apprehensive.
I hope everyone is enjoying pleasant autumnal weather. Please update us when possible about whether diet or PT is helping with chronic pain, Kelly's new position at work, family news, and so on. Keep moving like a shark, right? 😁
Lyn
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Hi all! Just came back from CoH after bone density scans, meeting with my study doctor, and then the endocrinologist. The appointment with the breast study doctor I saw was really interesting. (I signed up for a couple of studies when diagnosed and they follow you once a year and look at everything.) She said there is now a change in thinking about several things, like not worrying about needle stacks or bp readings if you haven't had problems with lymphodema. She also said that all the studies about food (i.e soy, sugar, wine, red meat) now show that those things have no bearing on cancer nor cancer cells! I was especially happy about the wine! It's just amazing how many changes have taken place even since we all were diagnosed!
My scans weren't great. I have severe bone density loss and have now moved into the osteoporosis stage (just had osteopenia last year.) I have also been having such back pain, and the scans show I have a mild fracture of the bone at the L12 vertebra. At least now I know I'm not a hypochondriac! I had a bone infusion last year and she hoped to stretch the infusion to 1 1/2 - 2 years, but said the change in my former was so severe, I need to do that again in a couple of weeks. Do you all take calcium and vitamin D3? I had stopped because by counts were all in the normal range but they said I need to start up again.
Kelly, I sure hope you can get a handle on the joint pain. They told me it might get better with time. The first AI I was on was just miserable, but then again, with all the other aches and pains, it's hard to tell what is what!
Kelly #2 ( :-) ) Hope you're enjoying your new responsibilities and also not showering with your hearing aids. My husband has them and I know they're a Godsend, but also a nuisance at times.
Cali good luck with the 6 month appt. I wonder if we'll ever get to a point where there is no anxiety before our check ups?
And Lyn, be sure to let us all know how your's goes!
I also have an art show coming up on Nov. 2 so that's keeping me hopping. It's in a beautiful setting at UCR Botanical Gardens so praying for good weather. I have a friend helping as well so it should be fun. I've just been going nuts trying to get everything ready. So better get off and take care of a couple of things.
Love, Dara
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Hello everyone! Sorry I've been unresponsive lately. I have been swamped both at work and at home lately. My company is building a new manufacturing plant and moving production from an old plant to this one. In the midst of that, we are re-organizing some of the responsibilities and have created some new positions. These are the ones I am taking on. So in the midst of all that is going on with the transitions and building, I am also hiring and defining brand new positions for 4 people. Exciting stuff but soooo much to do!
At home we have been still trying to finish up all the stuff from Jim's parents estate. That process takes so long and is emotionally draining. Additionally, I am chairing the Post Prom Party committee this year and we are in full planning and fundraising mode right now.
So my diet was a success AND a bust. While I was on it, I felt 90% better. So that is good. The joint pain (except for some real issues I have in a knee and toe) was pretty much gone. Once I strayed from the diet, it all came back. So, it did not fix my issues like I'd hoped but it does give me an option for relief. It is an incredibly strict diet and one that requires a lot of food preparation. I'll admit that cooking is not a favorite of mine. I'm capable, but just don't enjoy it. So, I need to motivate myself to get the recipes together and make a bunch of frozen meals so that I have something easy to grab day to day. The diet is basically, no soy, sugar, artificial sweeteners, dairy, grain, or processed foods. It IS adding lots of spices (turmeric, curry, basil, etc.), nuts (especially walnuts, macadamia, and brazil nuts), fermented foods, lean meats, non starchy veggies and fruits (primarily focused on citrus, mango, and berries.) Also a few supplements (mostly fiber). Most of the recipes are actually pretty good. There were a couple bombs (guacamole smoothie was not very good... was like eating green paste.) The diet is supposed to incorporate all the superfoods that are healing in plentiful amounts and at every meal (although, you do have to be careful not to eat too many Brazil nuts. More than about 3-4 per day can lead to Selenium overdose. Yikes!)
In the meantime, I am trying to deal with some of the REAL joint pain (bone spurs in my kneecap and bunions). I'm also starting PT (must be a Kelly thing...) for the knee and seeing a podiatrist soon. I did a boatload of blood tests to see if we can find any cause for the other joint pain and it all came back normal. That is good, but doesn't help me to find the root cause so that I can fix it... Frustrating. Dr. gave me an anti-inflammatory medicine. I took it for 2 days and it gave me headaches and blurry vision so I stopped. He said I need to try it for longer, so I guess I will try again soon to see if it helps.
Since I didn't notice any difference in the joint pain when I went off Tamoxifen, I am now on Anastrazol (sp?). So far so good. It has not worsened my joint pain so far. Not super excited about it though (especially hearing about your bone density scan Dara...) Yes, I am taking Calcium and Vit D daily. I think I'm only recommended to take it for 3 years since I already have 2 with Tamoxifen.
Haha, on my hearing aids. I've been doing much better to check before showering!
Dara, Have fun with your upcoming show!
VLH, Sorry to hear about your lump(s). Hoping it is nothing serious.
Cali, Good luck on your checkup. Hope everyone's checkups are going well!
ABJ, Let me know how your PT is going. I hope to see some improvement with it as well, although we are focusing mostly on my knees.
Hope you all are having a happy fall!
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So Lyn and Cali- check in and let us know how the check ups went. My check ups are basically "how are you doing" and a quick feel around. I will need to ask the MO about another MRI soon I'm guessing- mainly to check the foobs.
I'm back to dealing with my teen and her chronic health issues and once again mental health. We switched therapists in the summer, and now had to meet with the new one as she wanted to talk about anti-depressants. Seems a little fast, so trying to figure this all out is exhausting. Hoping to get a 2nd opinion. What to us seems like normal teen crap, they are saying is different, but of course if my daughter doesn't want to give us specifics the therapist can't (unless it's at the scary/self harm point and right now we're ok). She presents to the world a "normal" teen so it's just like I said exhausting lol.
My MO is keeping me off the AI until the beginning of November. Giving my body more of a break before deciding what drug to go to. She said either Letrozole or go back to tamoxifen. I definitely want to give the AI a shot as I know it gives me better protection. PT has helped- did a nice paraffin wax bath and wrapped the hands up. She also recommended since mine is worse at night, to sleep with mittens on- keep the hands warmer. Of course then it hit 90 degrees here so haven't needed it- but it did help. I also saw on another board about these cute jewelry looking splints- so I ordered a ring sizer and I'll probably order one of these splint rings off of Etsy.
Kelly that diet seems exhausting, but it did help so wonder if there's anyway to not have to go to the extreme?? Your work is definitely keeping you busy!!
Dara- wish I could check out the show! My daughter has a theater workshop that day and I've already committed to helping drive!
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