Can we have a forum for "older" people with bc?
Comments
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Great thoughts Illinois and Betrayal. An uplift for Saturday.
Have a wonderful perhaps restful and peaceful weekend all!
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Illinois - thank you for the lovely poem. It is much needed inspiration on kind of a down day.
Betrayal - hang in there. We are all pulling for you.
Puffin - hope you are doing okay.
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Can't make this stuff up: was awakened from a nap a couple of hours ago by fire alarms going off in the hotel. Grabbed my phone & room key and got out—the fire was on the first floor. According to the Niles PD, a cordless hand vac in the maids' utility closet was plugged in to charge but the battery overheated and ignited. They put the fire out very quickly and let us back inside within 1/2 hr. Everything we have is fine—the smoke never wafted up to the third floor (though when the central A/C kicks in we can get a faint whiff of electric-y smell—gets fainter each time). Not sure if it is medically safe to stay here; if the hotel doesn't make everyone clear out, our HomeLink service says they can put us up elsewhere (hopefully, the next all-suites hotel which we have till 7/11). They'll have to send assistance to move all our stuff—too much for our two cars, so we have to use some TaskRabbit or Dolly freelancers with a truck. Not looking forward to corralling & caging the cats, who have discovered a way to wriggle into the hollow between the mattresses and the top of the platform bases. HomeLink found us a 5-BR rental in Lincolnwood we can move into as soon as 6/23. Signing the lease tonight as soon as Bob gets home from work.
I'm beginning to think I may be a jinx.
All the stuff we didn't take with us has been wrapped up and sent to storage to be ozoned. Got an emergency dry cleaning order delivered yesterday—had just finished hanging it up before going to breakfast and taking my nap. I'm doing the walk-thru with State Farm's adjuster next Thursday. Seriously thinking of postponing the skin cancer excision surgery set for 6/11 and the 6/12 mammo, as 6/12 is our next moving date and packing up stuff (and cats) is going to be much easier without weight-lifting/exercise restrictions. The problem with doing that is that mammo appointments are difficult to get (had to reserve this one in Dec.) and the excision needs to be done w/in 60 days of biopsy to lower risk of local spread (much less actual mets).
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Sandy, you are not a jinx. The true jinx according to the comic strip Lil' Abner was Joe Btfsplk.
I would place self-care ahead of other issues. They can hire someone to pack and move from you and appointments like mammos are hard to reschedule plus ignoring skin lesion could add to future problems.
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Sandy, wow. That is too much.
Betrayal, glad you are recovering
Jackie, Loved the poem
MM, such a sad story
Puffin, (((hug)))
harley (((hug)))
Cindy, I need to wash my truck. All that exist around here are self serve. I wish someone would do it for me.
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Sandy, all I can say is WOW, you definitely couldn't make that up! I am concerned that your mammogram appointment needs to be made six months ahead of time! That is insane! I would find somewhere else to get my mammogram but would keep the appointment you have. It is easy to transfer mammogram records.
I would also keep the skin cancer surgery appointment; you likely will regret it if you put it off! The mammogram only takes about an hour, so why skip it? I am not sure what type of BC you had, but I got new breast cancers 15 1/2 and 18 years after my first diagnosis. I am still furious that Fox Chase Cancer Center denied me a double mastectomy and made me wait until I had cancer in that breast too, especially since I have a family history of BC, mother, two of my 3 sisters! Mammograms do save lives, all three of mine were caught early on mammograms! I would give anything to need mammograms again! No breasts, no mammograms! They totally mutilated my body, my breasts are ridiculously ugly, since I had two different reconstructions by two different PS's. I can't wear a regular bra because my breasts are very different sizes! Still, it is better than having my cancer metastasize.
What seems like a big deal now, in the scheme of things, is not. Keep your appointments!
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Yesterday was dh's 85th birthday. We had a perfect day, weather wise, for the farmers market and were back at the resort by 2 pm. We went to a friend's house on Long Lake at 5 pm for cocktails and then to dinner at Hilltop Inn at 6 pm. Our friend, Dorothy, has her 90th birthday on Tuesday so it was a dual birthday celebration.
Dorothy's husband, Carl, died last summer. His passing was unexpected because he wasn't ill. Much of our conversation was about him. Dorothy's daughter, Jennifer, is staying with her a couple of months, working remotely. Losing her husband and companion has hit Dorothy hard. She has had problems eating and has become much too thin. I hope she can gain some of the weight back and go on with living.
It's breezy again today and sunny. My computer says 55 degrees outside. I hope to have a relaxing day and get some laundry done.
I read the posts and responded mentally. Hope everyone has a good Sunday.
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The powerful potential behind change lies in the possibility that each
new beginning will bring us greater joy and freedom than we have ever
known. Whether or not that actually happens--whether or not we
continue to grow through the cycles of our lives--is largely up to us.
We play a part in what happens by choosing how we see our changes,
our beginnings, our endings. We can see each ending as a tragedy and
lament and resist it, or we can see each ending as a new beginning and
a new birth into greater opportunities. What the caterpillar sees as the
tragedy of death, the butterfly sees as the miracle of birth.
John Marks Templeton
Worldwide Laws of Life0 -
Sandy, I concur with others. Getting your health appts. done should be first. If you don't have/take care of health, what will the rest of it matter. I do know there will be difficulties either way — easy for people to advise you when they don't have to actually participate in the ups and downs of getting it all done, but I do feel first you have to have health or having let that go — how much will the rest mean to you.
Okay, just that I would do the health issues first and find adjustments for the other items.
Carole — A big Happy Birthday to your better half. 85 is quite an achievement and to think both of you are still able to travel, do lots of fine detail craft work to the point of being able to sell your art, and play golf and most of all enjoy life together. Sad about your lady friend Dorothy and I do hope like you she is able to find her footing again after the loss of her husband.
MM, you are so right - life is precious and we may find ourselves in an imperfect state at some point (I notice the loss of a kidney making a big difference for me) and yet, we are inconvenienced at times knowing that compared to the alternative that is really all it is.
Interesting night here at my hacienda. Not sure (I think around 3 a.m. which is usual for me anyway) but I had to go to the bathroom. Pitch black everywhere although I could see a light slipping under the door of my room from the living room. I went out — and find that we have no power, none. Neighbors houses that Dh could see were all the same. We had just had our friend Dave over earlier to fix the outlet behind my office chair. My mind went to that but turns out later a tree must have fallen in the ravine or some big limbs and tore one of the lines down. When I woke up in my recliner the power was back. One of the things we do enjoy about living in our little, tiny town, it seems when any little thing goes on the crews get called to go running immediately. Seems we never wait long and I found three different notices on my computer. The first to say there was an outage, the second to update progress and give an eta on the time it would be fixed and the third to let us know (being it was electric power we sort of noticed) that the repairs were done. So all is well this morning and life is good.
Hope you are all going to have a great day. Sending my concern for all going through procedures or are about to and those healing from things already done. Including chemo as well. I am in your pocket and not going anywhere till you are doing well. Hugs to all.
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Jackie, glad the power was restored so quickly.
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I left home Saturday at 11, to go down to Florida home. Flights were good, but taking the least expensive seat allows the airline to pick where I sit. You know I was in middle seats on both flights. I was fine.
To be here alone, coming into a “closed” house was strange. It’s weird being w/o my partner. And it’s so hot & humid no one was out.
I tried to use my neighbors WiFi but although she has 3, she knows none of her passwords to get in. The neighbor in the next villa gave me hers to use but I needed to be closer to her, it just didn’t work in my home. Ours is on seasonal hold, if I turn it back on, its on until May 2025.
So here’s my funny story. I went out back after midnight, with my cell phone flashlight on - fear a gator is about. I was trying to get my Kindle to hook up to download an update. I was behind my next door neighbors home, moving ever closer to the gf house I can hook up to. I heard a noise, shined the flashlight around and see nothing. I hear it again and gf motion lights went on. There strolls an armadillo! He wandered until he saw my flashlight then ran, bumping into things between the 2 villas. That was enough for me. I went inside asap.
Today I went to AT&T and turned on a hotspot for my cell phone. I was able to update the Kindke, and even hook up my tv to it to watch Apple TV.
Sandy I vote with the majority, take care of your medical appointments. We put things off and it’s never fit the better.
Carole a happy birthday to your dh.
Petite - watch your floor mats! The heat down here is horrific, so I don’t blame you for wanting someone else to wash the vehicle for you.
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Not a good day, seems to be a temporary setback and a lot of pain today.
cindyny, thanks for the chuckle. Others I have read your comments but need to get my feet up, not sit at my computer. See you when I am feeling better.
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Not "ignoring the lesion" (already biopsied, confirmed as squamous, and scheduled for excision), just putting the excision off by a week (might be able to do it Friday if there's an opening, Advice was to have the excision done w/in 60 days of the biopsy, so I'll still be able to catch it all in plenty of time. Am currently in the process of rescheduling it as soon as convenient.
As to the mammo, I used to be on a routine annual screening protocol for both breasts. The 6-month recommendation was triggered by a newbie radiologist who—unfamiliar with my seroma history—insists I get a closeup/dx mammo on the R every 6 mos. The head of the dept. took one look and set her straight. I just got off the phone with the breast center ans was able to push it back 2 weeks—by then I will have begun the gradual move from second hotel to new house.
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In the face of circumstances that drive others to madness, awakened people
have a kind of calmness and serenity inside them. They’re in charge of how
they react. They’re not calculating, they’re not cold, they’re not emotionless
people—they simply know how not to make negative assessments of the
world and what’s in it. They practice having healthy reactions to whatever
happens, rather than practicing ego-driven behavior.
Wayne Dyer
Happiness Is the Way0 -
Sandy, that is good news that you are going to be able to deal with your medical issues in a timely fashion w/o major duress during the interim of having to change residences. Just more of the 'life' can be messy at times syndrome. Still, though I'm aware of how easy for someone who doesn't have to physically and actually do the 'work'. Mentioned before I know, but studies have shown that if given the opportunity we all wish to take care of our own maladies rather than someone else's. Apparently, most are "awakened" to their own upsets and find they are more comfortable than they seem to others.
Betrayal. Hope your recent pain intrusion is a temporary thing. Perhaps an exercise flare that will compensate right back out. I sure hope so. I also hope the relaxation yesterday started you on your way to finding a good comfort level if a flare does come.
Starting out our day with sun. No rain yesterday and that was nice, but not bright sun either and a tiny bit cool. So hoping we don't heat too much today either. It is 66 degrees just now at almost 9:30 a.m. I will be up to my usually daily chores while doing some extra from the list and ready now with the fat extension cord removal stretched right across where we had to walk constantly gone (for good it would seem now) so I can better organize much of the rest of some of the boxes of items to be donated elsewhere. My house isn't very large, but I feel like the amt. of "stuff" makes it more like an Amazon warehouse. I've been longing for some wide-open spaces and hoping to be able to get plenty this go around.
Thinking of all of you with chemo, or recovering from tests, treatment changes, surgeries or anything else. Certainly, hoping for smooth times for all of you with as little interruptions as possible.
Happy Monday.
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Sandy, so good to hear you were proactive about your surgery and mammogram, not that I expected any differently of you. You are always on top of things, especially health issues! I am so glad to hear you will soon be in a better hotel room and then a house! The rental house sounds perfect! I always find new appreciation for all we take for granted after bad events happen.
Cindy, once again, you made me laugh! I too would have been afraid of gators! I hope all goes well with your dental appointments and your flight home is non-eventful!
Betrayal, I hope today is a better day for you.
Harley, thinking of you as you deal with effects of chemo and hoping it is gentle on you! I always hated the three-week rotation. I felt so sick the first two weeks, then would just start feeling better just before the next round of chemo. Just remember that each round is one round closer to being done with this! That can't come fast enough for you!
Puffin, I hope you are continuing to see positive signs and your friends are still helping you out a lot! Sending you positive healing vibes every single day!
Beautiful cool day, I am headed to the garage to clean the shelves and reorganize what we have out there. Tomorrow is also supposed to be on the cool side, so I plan to finish the upstairs and schedule a pickup for the things I am donating.
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We're having a beautiful day here, sunny and 70 degrees after starting out in the high 40's. I went to town, to the bank, the gym, the liquor store and, finally, Walmart's with a list in hand. Everything went well.
Betrayal, I'm hoping today is a better day for you. Also hoping Puffin and Harley are doing well today.
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Today marks one week post-op and first OT visit for assessment. Don't think I will need much in self-care department because I can do it but it is the same OT I had after December surgery who recommended Premier high PRO drink. Discussed next visit and she felt I just needed to gear back a notch.
Next PT visit tomorrow so will get her input, too. Have decreased time between pain meds and nor sure if that was wise. So am using the OTC Tylenol that I had not been taking and will take that every 8 hours to see if that will help any. Icing more and walking every hour to keep joint from locking. Elevate feet in between walks as I watch Father Brown series on BritBox. Finish one episode, walk to bathroom and around the kitchen island and then back to recliner with pillow under calf and ice. Rather boring but necessary. Not very hungry today and think that is related to limited activity plus pain.
Sunny but only low 70's and SIL recommended I try to get outside but thresholds to get in and out of house are high so trying to keep on a level surface rather than put pressure on right knee. Still not wearing slacks because waistband irritates incision so just lightweight robe and undies again.
Hope everyone else had a lovely day.
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91 with a real feel of 99. We might have 11” of rain over the next 3 days, warnings of possible flooding. Good grief!
Dentist, woo hoo, it’s all correct! He of course made some adjustments, but it feels like my bite again.
I went to AT&T because by adding the hotspot for internet, it changed my whole plan. And of course my plan no longer is available. They say the next plan will be less than what we pay now. We’ll see.
Out to lunch with 2 of the neighborhood ladies, I ordered a full meal knowing I’d take home half for either dinner tonight or tomorrow. With all the predicted rain, I may go grab something now, and keep it for tomorrow.
I went outside to check on avocados, biggest one is maybe tennis ball size, most are smaller. Then to my front walkway I sat and pulled weeds. So hot I was soaking my cloths. Came in and put on yard clothes, rather than ruin my good ones.
Betrayal, one day at a time. Puffin, I’m hoping you’re doing ok. Harley, you are hanging tough. Sandy, you did what’s best for you. Hoping the move to the next hotel goes smoothly. Everyone else, good juju to you too!
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Cindy, it sounds like the whole state is getting some serious rain. At least I will know if my repairs worked.
Those of you that were on arimidex or generic, how was it when you went off? Anything strange?
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Sandy -happy to hear you were able to reschedule your medical appointments with minimal delay. But the fire at the hotel is just awful. You have been through so much. Good luck with a relatively smooth move and hopefully the kitties adjust to your next home. Crosby’s Kitchen sounds amazing - I may need to look into that spot.
Cindy - you are much braver than I. Gators scare the heck out of me. There is no way I’d be out walking around late at night. Although it sounds like you startled the armadillo. Glad to hear the dental work fits correctly as this has been quite a saga. Stay safe with the rain and flooding.
Petite - I went off Anastrozole (Arimidex) just about a year ago and didn’t experience any side effects other than I felt my mood was a little better. My current oncologist is on a mission to get me back on AI or Tamoxifin but I am definitely resisting. I don’t believe it offers much benefit for me with Stage 1, Grade 1 and low risk Mammaprint. The 5 year mark is end 2025. So it doesn’t seem worth it to me to go back on it when I complete chemo as I would only be on it for about 16 months and last time it took me almost 6 months to adjust to the side effects. My mental health is much better without it and that is a huge benefit for me.
Betrayal - sorry to hear you had a set back with the pain. I hope the OTC meds and icing can get you through this phase quickly. You certainly deserve a smooth recovery after all you’ve been through. Side note - I am taking Claritin for the Neulasta pain and while I still feel some discomfort, it is tolerable.MM - thanks for the empathy. I’m grateful that my doctors are optimistic but it is frustrating that I have little to no interest in doing anything. I just want to sleep for the first two weeks of the three week cycle. Each cycle wears me out a little more but I know it won’t last forever and then I can work on getting my strength back. Yesterday was a rough day with stomach issues, pain and total exhaustion. Today is a little better.
Carole - happy belated birthday to your DH. I’m amazed at all you get done at the resort.
Cool weather is starting out our week but temps in the mid 80’s are expected by weeks end. I need to probably go back to the GYN Onc to deal with a granulation (healing tissues) from the hysterectomy. I just need to make sure I can stay awake for the appointment. DH will drive me since it’s a 45 min. - 1hour drive depending on traffic.
Have a good week!
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Petite, I stopped anastrazole in November 2022. I think I expected “more” normal feeling of life from being off it. But I was near 5 years older and I can’t say (if memory serves me well) that I noticed much of a difference in life.
I was also on genetic fosamax to offset the damage anastrazole did to my bones. After stopping both meds it was less than 2 months when my dental issues arose.
The anastrozole forced a hard menopause. I still sleep on average 5.5 - 6 hours a night, from previous bc 8+ hours. Less brain fog for sure. Nothing strange that I can pin point. Unless my “strange” is just something I’ve gotten used to.
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Petite I stopped Anastrozole at 5 years and felt my mood started improving and my joints ( maybe) were a bit better. My sleep also improved. That's all I can remember. Oh, I think my memory improved a bit. 😹
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I wrote a post on Saturday and it disappeared!!! No posts since the 6th. Oh, well. I know why. I was in self-pity about money.
Busy at church unbagging stuff for rummage sale and putting it on hangars.
Two telehealth appointments today. One with sleep medicine, the other with counselor.
One friend is having phone problems. I need to be at home to receive phone call for repair people.
Busy day. Oh, and I didn't sleep well last night, woman at rummage sale prep upset me.
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Cindy makes an excellent point about going off Arimidex or similar med after 5 years. You're 5 years older. What I thought were SEs from the Arimidex didn't go away. I did feel mental relief. I'm convinced that activity is important to help with joint pain.
Betrayal, you are good at managing your recovery. Being a nurse probably helps.
I plan to drive the golf cart to the golf course a little later and play some solo golf for practice and enjoyment.
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Treat people as if they were what they ought to be
and you help them to become what they are capable of being.
Johann Wolfgang von Goethe1 -
Sunny today. The entire week is going to be dry if weatherman is right. That will be nice as we haven't been too dried out in a while.
Anastrozole. I quit about 3 months early due to finally figuring out how badly it was affecting my moods (feeling quick anger over almost nothing) and so while I felt different and to a degree better, all I actually recall is waiting and praying I would get over the anger issue which had NEVER been an issue before. It took some time, and I still can get angry quicker than I used to, but if one can say it that way — it is more balanced, quieter, and a lot less apt to happen in an instant like before. I'm much happier now.
Chris sounds like you have a lot going on right now. Hopefully it all smooth's out, and good that you didn't lose THIS post. You could use some pocket friends during your move and repairs and other issues. We may all be too far away to lend an actual hand but we can offer our care about some of the ups and downs that drain us from time to time.
Hope everyone has a very nice day.
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Betrayal, sorry to hear about the pain setback—it happened a few times with me while in rehab due to the aggressive 2x/day PT. It is extremely important to stay ahead of the pain: as the rehab nurses told me, it is far easier to maintain a level of 3 (on the 1-10 pain scale) than to bring a level 6 down to a 3. Which Rx pain meds did they put you on? Reason I ask is that when it comes to opioids, they're transitioning from stuff like Vicodin, Percocet, Oxy and the like—which have 500mg acetaminophen per pill—to Norco, which has just as much of the opioid component (hydrocodone, anywhere from 5 to 7.5 to 10mg) but only 325mg acetaminophen per pill. (The more powerful long-acting narcotics like Opana have hydromorphone, and they almost always limit that to the first couple of weeks, usually inpatient rehab).
Too much acetaminophen per day can be hepatotoxic—so don't supplement an opioid (or any other painkiller containing acetaminophen) with OTC Tylenol. Even if you ditch the prescription stuff, though, an 8-hour interval between Tylenol doses will not keep you ahead of the pain, but it will still affect your liver. (I know Tylenol makes a 650mg 8-hr version for arthritis pain for chronic long-term OA relief—but it won't make a dent in acute post-op joint replacement pain). Tramadol and gabapentin are controlled substances but not opioids and don't contain acetaminophen.
Forgive me if that sounded condescending, but even my TKR-patient experience of a decade ago likely postdated the orthopedic pain mgmt. standard of care prevalent when you were actively practicing as an RN. Non-pharmacological management is elevation, which you're already doing (the mnemonic is "toes above nose," which isn't always practical if you get reflux from lying your upper body down too flat). Make sure you are elevating the entire leg—from above the knee to ankle, avoiding any bend in the knee. A wedge pillow or stack of pillows helps with that.
As to icing, there is a recirculating machine called "Polar Ice" which pumps icewater into and out of a hollow fabric-covered pad you wrap around the affected joint. (Needs electricity, of course, as well as frequent changes of ice). And you can make reusable gel ice packs by filling Ziploc bags (not the "slider" kind) with a 1:1 mixture of water and rubbing alcohol or Everclear. Zip the bag closed, put it upside down into another bag, and freeze. Apply for 20 min. at a time (with a cloth between it and your knee); then return it to the freezer.
Check out the forums on Bonesmart.org, which has sections for each type of joint replacement surgery as well as fractures. It was founded & moderated by a highly-opinionated British orthopedic surgeon's nurse named Josephine. For when you have full-transitioned off Rx pain meds, she devised the "Bonesmart cocktail," consisting of 1000mg acetaminophen and 4 ibuprofen tabs, q. 6hrs. PRN. (My own arm surgeon and endodontist both advised 6 ibuprofen rather than 4). Careful, though, if your gut can't handle NSAIDs.
Harley, surprised your onc is suggesting Tamoxifen for someone our age, especially so recently after major surgery. It carries a warning for risk of blood clots, a risk AIs don't have.
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Had a scare today: front desk mgr knocked on our door and asked why we hadn't checked out yet. She didn't know that for the one-day extension State Farm approved, there was a separate reservation for check-in today and check-out tomorrow. Stressful, but we worked it out. We can stay till as late as 3pm tomorrow to get everything (and the cats) out of the room and into our cars and the helper's truck. But I still haven't showered or done laundry. I swear, all these little details (including constantly responding to calls, texts & e-mails) are time-consuming and energy-sapping!
Tomorrow, we move first to an all-suites hotel (1BR/1BA, small living room, kitchenette); then on the 23 & 24th to our new temporary house. At the suites hotel, we are in the thick of everything in terms of transit, restaurants & attractions, but the closest pharmacy & grocery (a Whole Foods) are 1/2 mi. north. Complicating matters is that there is no self-parking, only valet that uses an open lot and is slooooowww. At our new suburban home, nothing (grocery, pharmacy, gym, Starbucks) will be w/in walking distance, and since there is no street parking allowed, will have to back into/out of our driveway. Big garage, but tough to access—one of us can park and then maneuver inside to turn around. Hope my new backup camera arrives & can be installed before then! (The backup camera on my 10-yr-old Outback began going blooey on me last week—however did we parallel park with just mirrors and craning our necks back in the day)?
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In the post which did not post, I mentioned that I had given my ice machine to a neighbor who is going to have surgery soon. Saves her a bit of money. Mine was free.
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