Best Of
Re: Can we have a forum for "older" people with bc?
Coming up for air, briefly.
I am currently in Contractor/Adjuster Hell. Yup, still stuck here in Lincolnwood. You will remember that we didn't even get permits issued till March (fire was 6/1/24). It was late April before contractor's crew chief called with photos of paint, carpet, cabinet, & counter samples. But the paint job has been incredibly sloppy: baseboards look like they were painted by a toddler (they didn't even use painter's tape). Front room wall needed repainting because drywall joint was visible through the paint—and now for the past 3 weeks nothing has been done to paint over the spackle that was applied). Problem is that the contractor subcontracted a work crew consisting of 3 older Polish guys, and only the chief speaks English. And due to labor shortages caused by the usual pool of Latino day laborers who congregate outside Home Depot drying up because they're terrified of ICE, this skeleton crew has been rotating between our house and other sites. Kitchen is half-finished, wrong fans were installed (supposed to have included remote controls but these didn't—and the pull-chains are too short and high up for me to reach!), bedroom closets were improperly installed (poles missing, baskets/racks bass-ackwards), bedroom cabinet door missing, linoleum in two second-floor rooms chewed up. They installed cheap "mushroom" semi-industrial ceiling light fixtures (like in schools) instead of the pendants I picked out. Window frames painted so thickly that they can't operate. Screens missing. Closet doors painted so thickly that they don't open smoothly or close properly. Tons of junk that needs discarding. And the fire-damaged rear exterior wall is still unrepaired except for a part that's been boarded-over. And of course everything is filthy.
When I met with the electrician last week to plan fixtures (and I sent him and the crew chief pix of those I chose), he said that even if work proceeds apace the city is so slow scheduling inspections (necessary for a Certificate of Occupancy) that we probably can't move back till at least August, and he suggested we request a lease extension through August. So I did, from both Homelink (housing liaison) and Freestand Home Solutions (landlord's agency).
Well, Friday I got a call from State Farm's adjuster (who hasn't been the sharpest knife in the drawer since this started) that he will NOT authorize a lease extension past 6/30! I explained what needs to be done and why it's taking so long, but he wants it in writing. I again informed Homelink and Freestand Home Solutions that we need an extension to 8/31, but he's stood firm in refusing. Our contractor (who picked out the Three Stooges of a work crew) said his office would work on producing the necessary detailed letter.
Today I went over (since our mail forwarding expired 4/30, we go back every other day to pick up mail) and saw that there's at least a month's worth of work that needs finishing satisfactorily—I took loads of pictures. The contractor called me back and said his crew chief said the place will be ready by 6/30! (In whose universe)? I let him have it and sent him 58 pictures of everything that's still unsatisfactory—but he needs to see for himself as I point will it all out in person this Thursday. It will be a hellish week, though—tomorrow I have to go out to Glen Ellyn to sing with my music partner on the radio (WDCB FM 90.9) during "Folk Festival" to plug our appearance at the Gebhard Woods Dulcimer Festival this weekend. (And have I been able to practice? Hahahahah…we haven't rehearsed because he lives up in Madison, WI). And Thursday night is yet another hospital dinner…down in Beverly…which will require driving separate cars since Bob will be coming from work. (At least that means Bob can't drink). Friday afternoon I have to head down to Morris for the festival. (Hope I can still get a motel room—otherwise I'd have to leave here Sat. & Sun. before dawn, as we're on first).
We can't order movers and cleaning crews, buy mattresses or set up deliveries (and re-deliveries of stuff in storage) till we have an ironclad date for satisfactory move-back. So it's the opposite of the Army's "hurry up & wait," rather "wait, wait, wait…HURRY UP!" I've been understandably paralyzed into inaction. Bob has been working hard so he's in no condition to help out with the administrative stuff (he doesn't know how, anyway, because docs have staff to do it for them). Meanwhile, rent here is $6750/mo (through now it's been paid by State Farm), and though we can afford to pay the next two months ourselves we shouldn't have to. (Adjuster snarkily says I should make the contractor pay). It's all-inclusive, but we still have to pay utilities, landscaper & property taxes back home.
I have my hands full with the cats—especially BangBang who is insanely jealous of anything that takes my undivided attention away from her. Roxy is a joy…except when she vomits from the pica that has her nibbling plastic & paper. (BangBang also has pica—she needs dentistry but I can't get her into a carrier—we've had to cancel several vet appointments. (Dentistry can't be performed by a visiting vet).
At least my (physical) health is okay for now—passed stress test & echo, but cardiologist insists that 77 is too high an LDL for me because of my coronary calcium score. Skin mapping turned out okay too. Of course, there are the usual aches, pains & strains. I have my mammo (hopefully, after which it'll revert to annual) 6/27 and my ocular onc appointment in Aug. (ditto). Still osteoporotic, of course; and have been unable to set up gym membership due to everything going on (and still can't wear socks w/o excruciating toe pain, which podiatrists refuse to treat). Fortunately, haven't re-sprained my ankle and the foot stress fracture hasn't been acting up.
But now UPS has effed up this month's delivery of Zepbound vials—first the truck broke down so the stuff had to be sent back to Gifthealth (LillyDirect's pharmacy). But every time a new shipment goes out it gets left out on the loading dock and "returned to sender." 3 times in the past week! (Invariably I get a UPS notice that it's out for delivery but 2 hrs later "returned to sender"). Gifthealth's chat rep apologized and confirmed it's suddenly started happening to lots of people. My guess is that it's another ICE issue: regular drivers haven't been showing up at UPS facilities for fear of arrest & deportation, so they've had to hire incompetent temps who don't understand temperature-sensitive shipment protocols. Today is shot-day, and I do have 4 weeks' worth in the fridge. But if this keeps happening I may have to go back to buying it in "pens" at Walgreen's—for more than twice the price. (No, Medicare won't cover it and by law Medicare/Medicaid patients can't use manufacturer discount coupons for brand-name drugs). I pay $500 for the vials from LillyDirect, a condition of which is that insurance cannot be involved—but when I buy the pens at the pharmacy I have to pay $996-1200, depending on which pharmacy and whether I use SingleCare or GoodRx. Used to be that I would order & pay for the vials and they'd be at my doorstep, in dry ice, w/in 36 hrs. Not now.
chisandy
Re: My Husband, My Life, My Love, My Family, My Cancer
Goldens, I am sorry as well. Feels like one step forward and two steps back at times. You at least got out walking so rest breaks are quite acceptable but feel bad. You will get back to what you were doing again, this was a setback but you will push on. In your pocket for that.
Yes, today is busy with an MRI, Thursday has me getting results with my RO. Both are afternoon appointments which is fine by me. I slept weird last night, light doze more than a deep sleep but feeling fine today. Booked first trip online for Thursday on the Paratransit, Was pretty easy to do.
Got laundry going, not too much and then dishes to clear, got sloppy again so need to clean up and keep washing dishes as I make them or make stuff in fewer bowls, I will figure it out. Later will be putting all the bags from the walmart shop into recycling bags. They packed it in 9 different paper bags which I prefer anyway. Planning a quicker meal and eating closer to when I leave around 11 or 1130. Going to take a slice of the thin crust pizza I heated up, not sure if I want to have that or the beans and lentils. I will eat shortly. Will have chicken and penne pasta, an egg and put in some sausage and cheese shreds, heat up in microwave for about 7mins.
Irritated at myself, managed to spill the wet dry vac which was full of water when dumping into another sink. It does suck out as it should but am sick of these accidents. Will put my washers in the bedroom and get the property managers finally to get someone to clear the drain. When drain is running clear, can resume washing. Also left out sour cream for a few days as I missed them when unpacking bags. Oh well, life goes on. I have a few of the sour cream and lime anyway. Will get sour cream later.
My lunch was good. Used a frozen macaroni and tomato sauce, added some frozen vegan sausage patties, no cheese this time. Topped with squeezable queso, little sour cream and a squeeze of the sour cream and lime. Added some sour cream and onion seasoning, very enjoyable. The squeezable queso is good as well.
I am quite frustrated feeling but giving into taking washers out of tub, unsure where I will put them but need to realize that the wet dry vac is a lot of work when it comes to wet weight and once clear, put in a plumbing request, either tonight or tomorrow, I will finally put that request in instead of struggling with it all. Can use my working smaller washer.
I hope everyone has a good day and in pockets for all.
Re: My Husband, My Life, My Love, My Family, My Cancer
Goldens - I've got my fingers crossed that this is an unfortunate set back, but that you will continue to improve. Glad you will see your doctor and maybe get some better perspective. Wishing you all the best! This cancer business really is the gift that keeps on giving, right?
I'm off for scans in a couple of hours, and dreading the whole thing. I have more than usual anxiety about what the results might say, plus I'm still extra fatigued and have ongoing digestive troubles and bad dry eye (super sore and scratchy), presumably from this shingles business that is generally improving and going away. One of the big problems with scans is that if they've been stable for a long time, the odds of getting that new one with results that show progression become greater, so the anxiety and worry increases. They're also more focused on my liver now, due to what has seemed like very slight increases in the size of some lesions over the last year. That means the results of these scans today could lead to a need for further tests and possible liver biopsy, etc. Also, a friend usually takes me and we go get lunch in between the CT and bone scan, but with this digestive issue, I'm not going to be able to do lunch, so maybe I'll just go sit with her while she gets some lunch, but I feel badly that it will mess things up for her too. I can solve the eye issue a bit with eye drops, but the stomach trouble; including "D" just doesn't seem to want to quit. It started with the shingles and the antiviral, but just hasn't calmed down yet. I might ask the onc next week when I see him to go over scan results, etc. Shingles I'm finding is just full of surprises. All we ever really hear about is the rash that can blister (but not always) and the awful pain and itching, but that's only maybe half the problem. There all sorts of other symptoms that come with shingles that you never hear about. Live and learn.
Now after my rant, I am hoping that all of the rest of you have as nice a day as possible and continue to enjoy this lovely time of year with all the birds and blooms!
Stage III and almost 6 years on hormone therapy
I’m about six years cancer free. I had a bilateral mastectomy with 14 cancerous nodes, rads and chemo, and my onc recommended I continue hormone therapy for another four years for a total of 10. I’ve switched back and forth between letrozole, exemestane and tamoxifen due to side fx. I lasted almost 4 years on tam but last fall the hot flashes, weakness and fatigue was too debilitating took a break for a few months and then decided to try exemestane again. This time the joint pain wasn't too bad but I’m now into my third month and the hot flashes are increasing as well as the fatigue along with insomnia, depression and anxiety/worry. I’ve never experienced anxiety like this in my life. Sometimes I don’t even want to leave the house! I’m seriously considering quitting HT. I know I have a high risk of recurrence with 14 cancerous nodes but my life is miserable. I don’t have a family but I do have pets and want to be around for at least another 7-8 years to ensure I outlive them. Has anyone else who was stage 3 ended their hormone therapy and lived to tell the tale five plus years on?
Re: Night sweats - any practical tips on how to manage?
Thank you again - kotchaj - for saying you get them occasionally, but nothing like when you were on Taxol. That is tremendously comforting. And bighubs - thank you for responding and for taking care of your wife. I will look into the cymbalta as well.
I know I keep saying it, but this group is so supportive. :)
Re: My Husband, My Life, My Love, My Family, My Cancer
@goldensrbest I have had to start over again at least 3 or 4 times during these cancer years, after various setbacks and injuries. It's very frustrating to be back at square one with no stamina. I hope your surgeon has some helpful input. For me, I just had to start again, doing what little I could do and trying to build up strength and stamina day by day. Wishing you all the best. Be patient with yourself. (Even 3 weeks ago, I could barely walk after a flare-up in my hip, I was using a cane in the house and struggling to walk 2 blocks-today I was able to walk 2 miles with a rest in the middle).
Re: Can we have a forum for "older" people with bc?
I did it again - wrote a long post and then an alarm went off on my phone, I came back and it’s gone.
Poured, poured and poured yesterday. 1.74” of rain which broke a record from 1901. So much rain, I had to pump the water off the winter pool cover again.
Beautiful sunny day today, 79 high. I hooked up the hose to the outdoor Windex bottle and went to town. After that I ran to my grand nieces soccer game. Partner, he took the tree crap off the pool winter cover; hoping for a Wednesday pool opening.
I moved out from a wall the large end piece of our entertainment center - it’s a display cabinet full of stuff. The AC split will be going on that wall and for access I had to move it. Oh the dusty cob webs I’ve seen! I used magazines as a hack to slide it on the carpet - side to side movements. I moved it a day early because I have an appointment with my muscle therapist chiropractor tomorrow at 11. Once I see her, my muscles are so loose I’m not supposed to do much.
Carole, hope your dh dinner bday celebration, as well as your friends, was fun.
I didn’t take notes and about now, I’m afraid to look back! If I lost this post I’d quit. You all know I wish you all the best!
cindyny
Re: My Husband, My Life, My Love, My Family, My Cancer
I am so frustrated at how this infection has affected me. I was riding the recumbent bike for 35 minutes a day at a level 3, then adding another minute each week. There is no way I could do that now. We took the girls to the dog park late this am and I could barely walk. When leaving I had so much shortness of breath that I had to stop multiple times to catch my breath. I feel like I have been sent back in time and will need to start over. There is no way I could go grocery shopping with the hubs. WTH happened??? Thankfully I will see my surgeon on Tuesday and have my drains removed. Maybe she will have some input….
Re: Bone Mets Thread
@norah2024, I hope that you get your results back soon, and that you get an effective treatment plan in place. I didn't realize that everything would have to be sent abroad, and I'm truly sorry that you're waiting for answers. Sending you my best wishes that you're able to stay on your current treatment.
I have a hereditary BRCA mutation so the plan for me is to start a Parp inhibitor. I did a liquid biopsy to check for other mutations, and those results will be used for future treatment plans.
mc22
Re: Just diagnosed with invasive Lobular Cancer
@vignjevic I just wanted to share my experience with invasive lobular carcinoma (ILC), in case it's helpful as you navigate next steps. My tumor was very small—just 3 mm—but it had already spread to the lymph nodes, which was a surprise. Because of that, I chose to have a double mastectomy and biopsy showed cancer in both breasts. Four months of Lupron followed to shut down ovarian function, and afterward, I opted to have my ovaries removed entirely. My doctor also recommended Zometa—not only to help protect my bones from osteoporosis caused by anti-estrogen therapy, but also because some smaller studies suggest it may reduce the risk of recurrence slightly. I did Zometa infusions every six months for three years.
Two months post-surgery, I began anti-hormone therapy. I started with Letrozole, which was rough for me—lots of side effects and contined for 2.5 years. After a 6-week break, I switched to Exemestane, which was much more tolerable. Once I hit five years on the medication, my doctor recommended stopping. I will see him again after five months off medication, that is this coming Monday.
As you probably already know, lobular carcinoma tends to grow slowly, is often strongly hormone receptor-positive, and doesn’t respond well to chemo. One pro is that recurrence tends to happen later, but the downside is that ILC can be harder to catch early since it rarely forms a lump.
At the end of the day, no one knows exactly what’s going on inside us—but for now, I’m focusing on not borrowing worries. If I can offer one suggestion, it would be to seek a second opinion if you haven’t already, and to ask for an Oncotype test if your doctor hasn’t ordered one. It gives more specific insight into how slow-growing your tumor is and whether chemo or radiation is recommended in your particular case.
Sending you strength, calm, and clarity as you navigate all of this.
