Can we have a forum for "older" people with bc?
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Betrayal - I’m so sorry to hear that the mammogram needs to be repeated in 6 months. (Hugs)
Cindy - enjoy PR. Are you there with a group?
Canarycat - good news on your test results
Marticcrn- a warm welcome. I’m sorry you had to join us but we are happy to offer support
Waving hello to all.
A few pictures from our trip.Seville Cathedral. We climbed the 343 ft Giralda (Bell Tower) on Monday
Hiking Caminito del Rey
Christmas decorations in Seville
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well, dear friends, I am official. Grade 3 TNBC T3aN0. PET scan on December 18.
KEYNOTE 522 starts Monday. She will re-MRI every six weeks and if the tumor is clinically gone, I get to go to surgery (so let’s hear it for complete response) and quit chemo.
I have my heart set on DMX but I haven’t had surgery consult yet. Since I’ve lost 40 lbs (thank you Zepbound), my boobs are just loose skin with very little contents. The tumor is 5cm, so resection would be deforming and I don’t want scanxiety. I’m also terrible about getting screenings done, as evidence by the fact I missed last year’s mammo. So …
telling people has been awful. I had my manager send out an email generally saying marticcrn has breast cancer (I’m a nurse) so people wouldn’t wonder/talk. My hair stylist cried when I told him. I haven’t told my adult kids yet and my 7 year old just knows Mommy had a lump tested. Gonna get there later this week. I really hadn’t anticipated how bad telling people would be.Port soonish, but chemo starts first. I need your nail care tips, your skin and stomatitis tips. Alll the hints pls.
Hugs to you all.
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I think scars are like battle wounds - beautiful, in a way. They show what you've been through and how strong you are for coming out of it.
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Marti, information brings a certain level of relief from uncertainty. I have no hints but lots of moral support.
We're in the 30's this morning. Winter weather but the sun is shining. The forecast is for rain tomorrow, and dh has a surgical procedure scheduled that will require us to travel to a city about 45 minutes away. He learned yesterday that the soreness in the roof of his mouth is caused by a cyst. He will have it removed under anesthetic, so I have to accompany him to drive home. We're hoping the rain won't be as heavy as forecast.
Yesterday hit hard on the bank account since we have no dental insurance. My cleaning and his trip to the dentist specialist amounted to almost $600. The surgery will be $1700. We're hoping that insurance will cover it. Older people without savings are "up the creek without a paddle."
Cindy, I know you are enjoying your trip. Thanks for sharing with photos.
Happy Wednesday to all.
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I forgot to commiserate with Petite for her expenses and headaches in repairs to two homes. Hopefully, the results will lead to greater enjoyment.
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Marti, sending support and prayers for all you are going through with treatments, finances, and the difficult discussions in your future. I have no hints since I was Stage IV de novo.
Cindy, love the photos. I miss travelling so they are appreciated!
Petite, I am sending prayers for you too. So much to do and go through.
It is snowing here today and schools are cancelled—the first one of the season. Fortunately I don't need to go out although my nurse daughter has to work tonight.
Blessings…
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Petite - I’m also commiserating with you in the headaches of owning two homes. It’s a joy to have a getaway but as I remember from my time of owning a vacation home, when it rains, it pours. Wishing you good luck.
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Sunny, but cold today. I'd like to be back in Puerto Rico and feeling the heat there. It was just above freezing. Neighbors had people using gas powered leaf blowers to clear their lawns, and it seemed like it was a coordinated effort because the noise went on for most of today at more than 4 houses. Our houses are not close together, but even then the noise was distracting.
cindyny, your photos are great. If you have a chance, hit the Marshall's there for great buys, and also hit the Drunken cookies store. I had the chocolate chip cookie and it took me 2 days to finish it. I also had the alcohol free pina colada and it was refreshing.
Did 4 loads of laundry today and straightened up between loads. I received the Tanzanite ring I bought for DGD back from the seller today. It had to be sized and I had forgotten it was being done. I thought the delivery was my DD's Alexandrite ring which needed a repair. That should be coming back soon as well.
I woke at 4:30 this morning and could not go back to sleep. Normally I'll read until I doze off, but I ended up finishing the book I had been reading without returning to sleep. I finally called it quits at 7:30 and got up.
harley07, loved your photos of Seville. It's a beautiful city. Post more photos. I went to Spain, Portugal and Morocco for my 25th wedding anniversary. I loved it. The food was so good.
marticcrn, glad you have a tentative plan and hope that the chemo reduces the size of your tumor. I can attest that surgery and radiation for BC can cause deformities, even for tumors much smaller that yours. Getting clear margins is their goal. So discuss your options with your oncologist as well as the breast surgeon. If you really want the DMX, ask others on here who have done that for suggestions. I can't remember the correct terminology, but there is a complete flat surgery where there are no residual "flaps" left. If your surgeon says "no" , then seek a second opinion. Remember no one else (including healthcare providers) can walk in your shoes, and this is your body. I am hoping your co-workers will be supportive during your treatment. Be aware that some might offer advice that is less than helpful, and wrong in more than one instance. We are here to be supportive.
Waving "hi" to everyone and I hope you had a great day.
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Great pics of PR and Spain. Spain is one place we didn't spent enough time in.
About StoryWorth. I don't know what it cost as it was a gift but I have found it a very good thing to do. It's encouraged me to really look at our lives. Ken isn't a writer but I've been able to ask some pointed questions and after 60 years I know a lot of answers. I have written from my perspective, sharing stuff from his life too. If you don't like this week's question, you can look for another one or just write about whatever you want. Or skip a week. And it's set up so DD can submit questions too. My problem is taking pictures of pictures to include. I'm afraid they are going to be very blurry.
Great pictures of Seville and PR. Wish we'd spent more time in Spain when we were traveling.
Marti - I'm not familiar with the chemo you are getting, but different ones do different things to hair and nails. Talk to your MO or nurse navigator about what you can expect. I lost all my hair but was fine being bald - what I hate is having a bald spot on the top now (probably from genetics and too many non-related surgeries.). I was getting fake nails and my guy managed to save all my fingernails and I lost only one toenail. I don't what he did but I suggest that you talk to your nail person now. The one thing I wish I had done was get my eyebrows tattooed. I missed them the most.
I was never nauseous but did have trouble with the constipation/diaherra syndrome. I found that if I was sure to empty my bowels (even if it meant taking a strong laxative) the day before chemo, I did much better. I was very glad I had a port put in. I suggest you start interviewing BS before too long to be sure you have one that's on board with the DBX. When my DH was practicing surgery, insurance was also a problem but I think the guidelines have been relaxed on that now.
We'll all be here cheering you on. I hope your friends, family, and coworkers are as supportive as mine were.
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I am so grateful for you all!
Breast MRI showed more inconsiderate cancer cells reaching out of Fred (tumor - he lives in the fold), making my size now 7cm. Clinically, I am stage 3a, grade 3. Nodes still look good. I have an incidental liver cyst she will probs want an ultrasound but it’s likely a nothing burger. I’ll stress about that later.
I’m glad I took December off. The sheer volume of calls, arrangements, appointments, would have made working my job (RN in endoscopy center) impossible. Every day this week has been at least four hours of appointments. But I live 15 minutes from a top ten cancer center, and the luxury of near immediate access to advanced testing is such a privilege.
I had labs Tuesday and they resulted in just under TEN MINUTES. TEN. MINUTES. Oncology, interventional radiology, imaging, infusion, lab, lil cafe, resource center, social services, etc all in the same building. It’s a sweet setup. (You can tell I’m a nurse)
Both my therapist and my new social worker reminded me that the last time I gave these chemo meds (taxol, carboplatin, cyclophosphamide, adriamycin) was, in fact, THIRTY YEARS AGO and people don’t just drop dead from sepsis all the time anymore. That’s my big fear.
surgery will seem like a relief. My visualization of the chemo is weird (kinda like I am): Fred (tumor) is a black blob. The chemo - ok, remember those little teensy plastic sabers they use for drink garnishes? They come in bright blue and green and orange and pink? I see each color as a different drug stabbing Fred and Fred screaming and dying a bloody horrible death.Idk, they said visualization was helpful. I might get some silly putty and some of those little sabers to play with at the infusion center. You think I’m kidding. I am not.
My psychiatrist gave me a script for ambien because (checks watch, yes it is 4:30am) I can’t sleep. But I did get a solid six hours tonight.
Can I go to Puerto Rico with you guys? I am indeed going for aesthetic flat closure and there’s a surgeon at the cancer center trained in it, so I’ll be bottoms only, lol. Trying to think of a cool tattoo for my scars.
Here in the Tein Cities, it is snowy and cold. Currently -3 in my back yard with about 1/4” of fresh sparkly fluffy snow on top of about a 7” base. I’ll sweep it off the walk in the morning. I love the cold beauty of winter. The short sunny cold days and the sparkly snowy silent nights. The earth is sleeping and healing. Maybe like me right now. If things go exactly to plan, I will be completing chemo just in time for spring, around the end of April. I like that imagery.
Today, I meet with my Rabbi and I’m getting my tattoo! I’m profoundly deaf in my right ear (from birth) and my whole life my friend apologize because they can’t remember which side it is. I get it. They look EXACTLY ALIKE. It’s much worse with healthcare professionals. And they talk softly.
Solution! I am getting a small MUTE BUTTON tattoo just below my deaf ear as a signal for my friends and HC workers. Gotta get it done today. Chemo Monday.
Any must-haves for 20 weeks of chemo? Fave lip treatment, lotion, whatever? What kind of head covering if any did you like and why?
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Marti, we don't live very far apart. I live in Monroe County Wisconsin, just east of La Crosse County. All these people saying it is cold at 32 degrees are so funny. It is -8 deg F right now.
A port is essential, because the poison then dumps into the largest vein in the body, diluting quickly to avoid damage to the circulatory system.
My daughter got me some beanie-style caps, very soft because the skin on my head was sensitive. Otherwise, my skin was plenty. I was sad when the curls grew out.
I love your creative visualization. Shows a sense of humor in difficult situations. My reaction is to grimly soldier through, not as adaptive, I think.
Harley and Cindy; beautiful travel pictures!!
I only have religious Christmas decorations this year. Tossed my little tree, it was getting ratty looking.
I got myself a 1 1/2 quart French press. It is very fussy if you use it for coffee, according to the directions, but I am using it for tea (decaffeinated). I was well-hydrated last night and slept very well. But I keep forgetting my early afternoon gabapentin, so things have not yet reached a state of balance. I ran out of tea, but have plenty in the fridge.
My SIL's family is building a family vacation home in Hawaii. It will be a duplex, with a caretaker's home on the other side.
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marticcrn,
I remained on my regular threads. Also, on the day of my 1st chemo treatment joined a chemo thread. 😘
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I truly believe that everything that we do and everyone that we meet is put in our path for a purpose. There are no accidents; we're all teachers - if we're willing to pay attention to the lessons we learn, trust our positive instincts and not be afraid to take risks or wait for some miracle to come knocking at our door.
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Chris, okay I will concede I am a cold weather wuss, lol. Our temps should be in the 50's at this time of year and we are 20 degrees off that prediction. The winds are not helping because they are making " a feels like" situation less than the air temp. I become a hermit when it is this cold, because once I get cold, I have difficulty getting warm again. Currently I have a long sweater covered by a Heat Holder fleece jacket on and I am freezing.
I met with the pulmonology CRNP today, she reviewed my sleep test results, and have to have a slew of additional tests done to narrow down what is causing my breathing issues. I was able to get a cardiology appointment for tomorrow due to a cancelation, otherwise first available is February, that is early in AM, and then I have a PFT and 6 minute walk test scheduled for the afternoon. I called today and was surprised I had a pick of appointments, including 2 times that were available for tomorrow and more for next week. The sooner I get these done, the sooner I can get a causation, and then a treatment plan in place.
Taco, thanks for the information on the story and what it entails. It sounds interesting. I have some family hx books (sort of along the lines of old baby books) that ask questions like these and have started those, but sadly have not finished them. It is a nice gesture to leave to your DD.
harely07, good to see you back.
Guess that's all for now. Hope everyone had a great day and waving "hi".
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Marti, I didn’t have chemo, so like Carole - I have no solutions to share. But I’ll lend any support you need. HUGS
I can’t remember who asked, but in PR we’re on our own, no group tour. Before we bought a second home in FL we vacationed in PR for 10-12 years, always on our own touring the entire island and even the island of Vieques off the east coast of PR. But we haven’t been here in 10 years, since purchasing the vaca house in FL.
Petite, unfortunately I can definitely relate to repairs happening in both places. But it’s all worth it in the end .
Today we took Lyft from the hotel to Castillo San Cristobal. We were here years ago but SO wanted to see it again. We spent 2.5 hours there. Loved seeing it again! But it did drizzle/rain on us 2x. Temp was 84 but high humidity. I was soaked in sweat.
We then headed to El Moro, another National Historic Site and also part of the US National Parks. We used our America the Beautiful pass and saved a total of $40 in entrance fees.
We caught the rainbow in this one.
I think we were out for 5 hours, walked over 6 miles, and sweat out a ton of liquid.
Tomorrow is a beach day, I just want to chill out with a book listening to the waves. We’ll get back to Old San Juan over the weekend, to take the ferry to Casa Barcardi.On a side note - the San Juan Airport (I can’t remember if I already mentioned this, must be the rum drinks, ha!) has expanded so much; there is a terminal for just JetBlue. But anyway, we puttered in thru Duty Free looking at booze prices. Don’t know if it’s tariffs or what, but we didn’t see any deals. One of the employees told us to go to Walmart, prices are less. Rum cakes that my niece loves, thinking Christmas gift, cost more in Duty Free than they do back in FL Tee shirts were $23-28. We’ll grab some tees at the local drug store for $13.
Harley, your pictures were beautiful! Share more.
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You may not always have a comfortable life and you will not always be able to solve all of the world's problems at once but don't ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.
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Betrayal, good quote. Very positive.
Cindy, your sea photos made me think of Jackie. She would have loved them. I don't doubt tariffs are behind the prices.
We had a stressful day yesterday. Drove 30 minutes in downpours of rain to an oral surgeon's office for dh's surgical procedure to remove a cyst in his mouth. It was infected and required a lot of drainage. DH paid $200 for a time-released pain injection but it didn't seem to do much to prevent pain. He took the dosages of ibuprofen and tylenol, as instructed but was soon searching through our stash of prescription painkillers when we arrived home. He was a miserable patient and that means a miserable caregiver. He was up during the night for more pain med but said he still got some restorative sleep.
This morning he seems to be on the mend. The oral surgeon assured dh that he will be able to resume wearing his partial when the surgery site heals. One of us has to venture out in another rainy day to pick up a prescribed antibiotic.
We have been in drought conditions so the rainy days we're having should reduce the rain deficit. I haven't decided whether I will go to the 11:30 senior exercise class. I probably will.
It definitely is not a good pre-Christmas time for the immigrants in New Orleans. The Border Patrol have arrived and are doing their thing. A lot of coverage in the news.
Happy Friday to everyone.
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I have friends in Twin Cities who have a medical transportation company. They are all Catholic naturalized citizens from Africa. Good men. Praying for them. We have talked aout the possibility that it might extend to them.
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hi everyone!
We here in the Twin Cities are snickering a little about our warm weather immigration enforcers here. I think they’re definitely out of their element - we’ve got roughly a foot of snow on the ground and they’re walking around in sneakers.
It’s warmer today and snowing steadily all day. We are getting an inch or two of snow every day.
Had a long pre-chemo call with my MO’s nurse. I was freaking myself out over this chemo because the last time I gave it was so long ago and people DID NOT DO WELL on them. Times have changed. Meds and dosing is better. Response is better.
Cleaned out my fridge. Changed out the shower curtain liner. Got gloves and KN95 masks and hand sanitizer and Clorox wipes and Imodium. Have my little notebook.
Today, I am grateful that I can walk outside and shovel my own walk (the snow is so light and fluffy though, you could just sweep it). I’m grateful I could do my own grocery shopping. My hair looked good today. The winter is kinda perfect.
Boy howdy though, this sure sucks! Need to have the talk with our daughter who’s seven tomorrow. She’s hardheaded and resistant to change - which I think can be strong character traits, but this is gonna be a rough one for her. She’s been worried about us dying.
PR sure looks gorgeous. I could sure use one of those luscious melons and some fresh fish for dinner! Also, lol over the temps - I lived for 25 years in California - the first time it dropped into the 50s in September here, I thought I had moved to the frozen tundra!!
Wish me luck talking with my daughter.
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Back to the beach today. The hotel isn’t on the beach but a 5-10 minute walk. They set up chairs & umbrellas when you get there. The water was about 79, the air 85.
Then back to the hotel, to shower and make happy hour before dinner. Tonight we had the option for a coquito - they say Puerto Rican egg nog. It was strong! I drank one and maybe a quarter. SO finished it for me, and he is napping right now.
I ordered a dinner to go, and waited outside the restaurant. We were sitting here listening to Christmas music.
The doors behind the tree lead out to the pools and hot tub area. Many companies are hosting their Christmas parties here. Super loud Wed & Thur so I can’t wait to hear what tonight brings. Thankfully we only hear it in the front room, the bedroom is super quiet.
I believe we’re heading back into Old San Juan tomorrow. Ferry over to Barcardi is the plan, which could change by tomorrow.
Marti, I send you strength to get through telling your daughter. ❤️
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Another very cold day with temps hovering at 32 degrees, breezy, but sunny, so we'll take what we can get. Supposed to move into the 40's over the weekend, like that will really be appreciable.
Had cardiology appointment to discuss need for her to follow-up on sleep study results. She said I have no issues from a cardiac standpoint, and that what happened after my knee surgery was due to physician attempt to get BP up. So fluid overload was due to physician intervention, and not heart disease. Phew! She said to contact her if I had any issues and she would look for PFT results. She also plans on contacting Pulmonology NP. So, this is the one positive so far this week.
While I was waiting for cardiologist, DSIL reached out to tell me her DF is dying. He had been hospitalized after a fall and a dramatic drop in his platelets. He has metastatic prostatic CA, was undergoing chemo, and seemingly doing well before the fall. We last saw him at my niece's wedding last November. He's 88. She just let me know he'll be going on hospice this evening. His wife, her stepmother, is having difficulty accepting this, but this is the second time she will be losing a husband, so I am sure denial is her coping mechanism. They live over an hour away, so it's not like I can do much right now.
My DF died on 12/8, two days before my mother's birthday and 4 days before his younger brother's birthday. This is a horrible time of year to have to deal with this and even harder for her because her birthday is 12/24. She has a brother, but he had learning disabilities, and lived with his Dad and stepmother. Not sure what will become of him now. He cannot live independently.
PF'T's not as bad as expected, and I was able to do the 6 minute walk with no difficulty. I did not sleep well last night and was up by 3:30. I read, dozed, woke again, read and dozed about an hour before the alarm went off. Results will take a week according to Tech who was extremely nice, and personable.
Perhaps things will get better? I can only hope.
carole, thanks for feedback on the daily quote and yes, Jackie would have loved the photos.
marticcrn, good luck with talking to your 7 year old. Tough age because they panic, but need to be informed even if just basics.
cindyny, love the photos. Send some of PR's heat this way please.
Hope everyone had a great day and waving "hi" to everyone.
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Marti, cyber hugs. 6 years out and my scar still hurts, especially with any weight gain. Check into "starting chemo in December" I was on one for radiation. I still hear from those ladies.
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Seeds of faith are always within us; sometimes it takes a crisis to nourish and encourage their growth.
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A chilly, dreary morning here in south Louisiana. Typical winter weather. We're getting long-needed rain over a series of days. Inside my house is warm and cozy. I'm making beef, veggie, noodle soup for dinner tonight. It's the season for it.
Wishing everyone a good Saturday.
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carole, how is DH's mouth? Hope the discomfort has lessened for him. Glad you are getting much needed rain, but do hear you on the gloom that it brings. I don't think of Louisiana being chilly, but I guess you do get a seasonal change, too.
petite1, 9 years for me and my scar has never stopped hurting and it is always aggravated after a mammogram. The degree of compression they use for spot films is more intense, so that really sets it off. Constant reminder that I wish I did not have.
DSIL's DF entered hospice last night. He drifts in and out. Dr's discussed overall poor prognosis with him and when asked if he understood, or if he had anything to say, he said "well, I feel like saying, oh, shit!". This is so much like her Dad. Explained that even if they could stent his liver duct, it was just buying time which he has been trying to do with chemo. He's always been pragmatic, so she feels he made the right decision, even if it is tearing the family apart.
It is 34 degrees here, we have snow on our hilly driveway, and since DH waited to take his car down to the bottom, it is stuck at the top. It is snowing off and on with light showers followed by heavier ones. We were planning on going to DGD's basketball game, but that plan is off. I don't dare try to walk up and down the driveway now that I have osteopenia of both femurs.
I haven't seen much of the deer lately. Yesterday, one of the younger ones was in the backyard eating grass and leaves. He was back again this morning. I need to get the pumpkins from the porch up in the woods behind the house so they can feed on them. I'll put them out slowly so they don't pig out on one day. The squirrels also like them, and it's funny to see them appear from the interior of a pumpkin. They like the seeds, plus they will gnaw holes in them.
Think I'll clean the primary bath and bedroom today. I have some things I need to put away, too. May try to go through a few drawers to purge things as well.
Hope everyone has a great day and waving "hi" to everyone.
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Marti - wishing you strength for explaining your situation to your 7 year and for going through chemo. I did not have chemo for breast cancer however, I had Carboplatin + Taxol for ovarian cancer last year. I’m not familiar with the chemo you are having but do know significant strides have been made in keeping patients comfortable while undergoing treatment.
Earlier this week, we visited Barcelona and took a paella cooking class with a visit to the market as well as visiting Sagrada Familia, a Catholic Basilica designed by Antoni Gaudi. Construction started in 1926 and is scheduled to be completed next year. We had visited the Basilica in 2008 so yesterday’s visit had significant progress. We took an elevator to the top of one of the towers and walked down a very, very narrow, winding staircase. Today we are in Valencia, Spain but I haven’t sorted through my pictures yet.
Waving hello to all.
Sagrada Familia
Market visit
Paella
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What a beautiful paella.
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It is finally soaking in. Elderly people also lose their Medicaid. All I can afford is an insurance policy for meds Including "prescribed" OTC. It is what it is, but nobody deserves this.
Just got back from a ten-block walk with Tippy. It is now a balmy 24 degrees outside. The sky is cloudy, but plenty of sunlight is getting through.
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hi friends!
I am trying to learn your names, I will get them soon!
Cindy, I am longing for that warm sand and water! Looks lovely! Enjoy!
Betrayal, well, sounds like the ol’ ticker is decent. Kinda hoping sleep apnea for you? Only because my doc told me that if I had it and got cpap, 90% of patients reported less daytime sleepiness, fewer morning headaches, better sleep. Sounded good to me - then I didn’t have sleep apnea. So?
Carole, can I just say I love the smell of the Deep South in the winter. Really earthy and moist (Minnesota winters are very dry), kinda sultry. Come on up here sometime and enjoy our fierce frosty winter.
anyways, had the convo with our daughter this morning. It went way better than I expected. She was most upset about hair loss. I ordered some fake bangs to go under my scarves. I’m gonna see if they look ok under hats.
My grown up boys are next. My oldest is a rock star ( ) on tour, completing tour I think Monday, and flying Istanbul to LA after. I don’t want him freaking out on a long flight, so I’m telling both boys on a FaceTime probably mid week. This will be a hard one because my younger son’s mother in law died after a long leukemia fight last month. His wife is understandably still reeling.
Honestly, I’m ready to get this show on the road. Any tips for clothing when I go with a port (date still TBA)? It’s winter. But they also have warm blankets.
Today I am grateful for my daughter knowing. And my wonderful synagogue. And for you.
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Check with your nurse navigator. Some warm tops have raglan sleeves with a zipper on one or both sides. I came across a few of them at secondhand stores afterwards. Would have been nice since i was getting infusions for so long>
Tippy's "armpits" (inside part of his legs) have finally been cleared of matts. He is much happier.Anytime, it is wonderful when we are linked up to a supportive spiritual community. But especially in times of trouble.
Beautiful pictures harley and cindy. Carole, how is dh doing with his mouth cyst? Hopefully he can wear his partial by now.
We have a Health Care Mission in the area, hopefully they are gearing up for an influx of new patients. When I used to go there, I really appreciated how they had respect for me. It is not like I spent most of my life being wild and crazy. Much of it was a bad marriage and poor career counseling, with cultural prejudice tossed in for good measure.
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