Can we have a forum for "older" people with bc?

In the immortal words of the late great Roseanne Rosannadanna, "it's always something." After I left for the hotel yesterday, the cleanup crew inadvertently locked not just the deadbolt (for which we & they have a key) but also the spring-loaded doorknob, which we never use because we never got a key (the seller 37 yrs ago said it was insecure). So my neighbor couldn't get in to retrieve a UPS envelope that made it through the mail slot. Called & texted the crew chief & project mgr who assured me they can get in. (I almost don't wanna know how).

I can't get the smell of smoke out of my nostrils. Not enough Febreze on the face of the earth to deodorize the stuff we had to bring to the hotel. Unlike Bob I've had to spend hours on-site going through things (toss-or-save). Today need to meet State Farm fire investigator for walk-thru to confirm the electrical cause (and pro forma rule out arson). Clothes cleaning crew let me pick out a few things for a rush order to be delivered Friday—so I will have an outfit for the hospital dinner (an easier commute from our next hotel). Bob's commutes till then are horrendous due to construction everywhere. (Chicago needs to change its motto from "Urbs in horto" to "Alternate routes? Bwhahahaha…").

On the bright side, Bob seems to have lost his desire to smoke.

Derm assures me I can get my mammo the day after my excision and that I can lift up to 15 lbs with that arm. Knock wood, biopsy site is healing, so I can stop dressing it. Not sure how much weight if any i lost this week—though I'm getting more de facto exercise and eating fewer calories, I must be pumping out stress-induced cortisol that's sending fat to my belly.

Yes, I agree totally Sandy — it is always something. I feel so for you having to exist with the smell of smoke all the time. That key thing is the pits. I do have an idea of what that is like. I don't even know where my house key is. We have seldom locked our doors out here in the woods. We are (at least in summer) hidden from the main road in and even when not, you'd think you're turning into someone's driveway almost. Anyway, we just leave everything un-locked — house, garage, storage building. Frankly, most places anywhere are not so hard to get into if there are regular locks and so we choose to take the attitude that at least we hope to save ourselves some of the damages we have seen other places — like my BIL's house. Back patio windows big and old very thick plate glass. Broken so entry could be gained — not sure they made it in, but had to be a special order to get that window replaced.

Anyway, I am thinking about you. Don't know if now's a good time to get another front door lock or not. You're not used to it — and after all this is done, the same type of 'mistake' may never be made again. Also, another key to carry. Most of the time we all have enough of those already. Sure would be nice for both of you if Bob decides for good that he no longer is interested in smoking. Be saying who'da thought over that one.

Likely we will get some rain today. It's not super dark but is a bit dreary out. I thought we might get it yesterday but didn't. It's from a cold front. Doing catch up things today mainly. Got a couple of bills and some other minor chores and always the normal daily things.

Hope you all will have a great day and those who need it rest and healing from tests, procedures or surgeries.

Used the carpet machine on the area around the front door. On occasion, Tippy pees there. Had to leave for a while, now I am wearing my socks. Should get rid of the smell. Went over by the lake, talked with a couple walking and two dog-owners. One friendly little guy who kissed me. Tippy has been trained not to kiss, and I miss that. Early this evening I will go over to the church and help set up for rummage sale. Tomorrow they will pick up the stuff on my porch. I have several boxes packed and ready to go out there.

I forgot to post.

Another way to get off the newly clean carpet. We took a nap!! And it does look and smell good.

Cindy - good luck with your dental appointment. I hope this ends the saga with the Florida dentist. Would be really nice if insurance paid for this round of orthotics.

Chris - after cleaning the carpet and packing for the rummage sale, a nap was well deserved.

Petite - sounds like you are enjoying the social events - good for you. I have a 30 yo grand nephew and three great grand nephews/niece. How did that happen? Surely I can’t be that old! Have your eye issues resolved?

Sandy - the smoke stench sounds awful. I hope you can have that resolved quickly along with the door key issue. You are in my thoughts.

Betrayal - thinking of you and hoping pain is minimal. (((Hugs))).

Had chemo round #3 today. Took 6.25 hours down from previous 7 hours. First I meet with oncologist than head to the infusion center. The premeds take about 30 minutes. They no longer have to titrate the taxol, which takes 45 minutes, in addition to the 3 hours for the infusion. The titrate is no longer necessary because I have not had a reaction the previous 2 rounds. The carboplatin only takes 35 minutes and I’m packed and ready to dash out when the IV needle is removed. My veins were a hard stick today - took 5 tries to get the IV in. They had given me the choice of a port or no port before I started which I declined.

Back tomorrow for the Udeynca (Neulasta) injection to boost my WBC. My absolute neutrophils were below the minimum limit today but the onco approved chemo figuring I could withstand it until I get the injection tomorrow which cannot be given until 24 hours after chemo. She doesn’t seem concerned that my heart rate is elevated (for me) . As long as it stays below 100 it should be OK. My hemoglobin is low but not low enough to warrant a transfusion. She is monitoring the foot neuropathy and hoping it goes away after chemo. Other than low blood counts, my weight, BP and metabolic panel is normal which is good. My treat for going to chemo is that before my husband leaves for a few hours, he goes to the Panera in the hospital lobby and brings me back lunch since I cannot leave the infusion center. I had a salad and a brownie - I figured the salad partially offset the sweet.

Had a burst of energy tonight - likely due to all the steroids in my system. Went for a walk and then gave the kitchen a good cleaning and swept the floors to give DH a small break from housework. The energy will likely disappear in the next 24-36 hours.

Have a good week!

What some of you seem to accomplish in a day just makes me tired!

Chris, are you moving locally or to southern Illinois? I was under the impression that it was to be the latter but your recent post suggests otherwise.

Sandy - glad you could get a few things with a quick turn-around. Will you be able to access your fall/winter stuff before you are back in the house? I seem to remember we got 3 deliveries of clothes in the 4 months we were out.

It's 7:30 pm and 105 degrees still. It's going to be a very long summer. Fires have already started too.

Book club read "The President's Daughter."

I'm beginning to understand how awful it must be to live near wildfires, even if one's life or home isn't in danger. It's one thing to get an occasional whiff of the smoke (as we did a little last June when the AQI was over 200 from Canadian wildfires). It's quite another when it permeates everything you own and there's no escaping it. I can at least use Febreze, shower, and do laundry. As for cool-weather clothes, I expect clothing will be returned to us in dribs & drabs. We'd been planning to donate much of it anyway, but not in its current condition.

My weight-mgmt NP sends her sympathies but wants me to work out &/or swim 20-30 min./day. As if. I never knew how much work it could be taking care of two cats in a hotel room with no help (Bob just keeps them company while I do all the work). Then there's all the administrative stuff, doing laundry myself until we're semi-settled and can go back to using a service (and give them an address), trying to work in self-care (shower, meds, biopsy wound care—and next week, excision wound care, etc.). Slightly shorter drive from here up to my derm in Lake Bluff than from home; but no exercise or lifting with that arm for 4-6 weeks. Next day is my semiannual R dx mammo/US—and we move downtown as soon as I get back from that. Will need to do all the packing Monday (except of course for the cats' food, water, litter and paraphernalia). We realize that we have more stuff to move out of the room than we brought in—and even that used up every spare inch of both our cars. So tomorrow I'm downloading TaskRabbit to find someone with strength and a roomy vehicle to help us move. Gordy works (but doesn't drive and has a bad back) and all our friends are our age or older and not in perfect health. I have two godsons—but one's in Seattle with a wife & toddler and the other is, to put it gently, messy and sedentary. He can code up a storm, but can't push a vacuum cleaner. Drives his fiancee nuts.

Thanks to all of you who offered concern about my surgery. Seems people in OP registration are just bred to be rude except for the gentleman who monitored sign-in sheet who offered me a smile card to give to my surgeon which she got if she gave me a smile. Had to laugh as did she because she is always smiley. Pre-op staff were great, met anesthesiologist who answered all my questions with patience and understanding of my concerns. CRNA had time on his hands (since my case was late starting) so he actually filled me in on her attributes and spent over 30 minutes talking to me before I went to OR. Nice to be that personal and to feel comfort in his presence. Spinal went well and I don't remember much after that. PACU nurse was phenomenal and made sure I experienced little to no pain. Spent nearly 4 hours there because had problems with low BP and oxygen. She kept pushing PT off x 2 and finally told her to wait until I was in my room. Good thing she did because BP was around 100/50 and pulse ox in high 80's with exertion.

Finally saw PT for transfer to from bed to commode and then chair. walked a few steps but again BP and pulse ox tanked. Night nurse was phenomenal. After introducing himself and asking me what MY needs were, he mapped out his plan to meet my needs in 2 hour increments that he changed as needed and repeated with every contact. Response to call bell was very good. Pain handled very well all night so I was able to doze off in short spurts.

Had one episode of vomiting after snack in PACU and stretcher transfer to room. I did mention I was hot, nauseated and diaphoretic to day nurse. Room AC was not on and before it finally came on, motion sickness from stretcher (why do they push them like the hospital is on fire (sorry Sandy) even when you ask them to slow down) brought up the snack before call bell was answered and they did not leave me the blue vomit bags they have on hand.

Discharged on Tuesday after being told going home on Wednesday and had a horrible PT experience because he was hell bent on my completion of his discharge goals and not the least bit concerned that I was in such pain I couldn't complete the exercises. I wasn't able to walk as far as he wanted, was in agony and he insisted we were completing walk to department so I could so practice stair case! Was not happy when I told him I was in agony, was concerned about my safety (he wasn't) and I was going back to get pain meds NOW. Steps would have to wait which is when he went into his tirade on "we don't do PT in 2 phases and I had to do the steps" because he didn't have time to wait until oral pain meds kicked in. Meanwhile BP and pulse ox had again tanked to above low numbers. Told him to leave as did the RN. He eventually came back with OT who was the complete antithesis of him.

Spent Tuesday evening trying to get the pain meds I was assured had been ordered only to be told by the pharmacy they could not be filled because they had NONE in stock. PA had told me she had made arrangements for a partial order on Tuesday based on their stock availability and the rest would be available on Friday. They do not order narcotics on the weekend so I had to get full order by Friday. So I am so glad I insisted RN give me pain meds before I left hospital (said she could not administer them at 1:30 because I was discharged) but I reminded her they had been due at 12:30 so she was late in administering them. Had to insist on 2 and glad I did because never got next dose until 10 PM.

To make a long story short, DH was sent to 24 hour CVS (unfortunately they handle my prescription plan) by my regular incompetent CVS who never told PA they didn't have the drug on hand. That pharmacist has to contact PA for new prescription because they don't have the drug I need but do have a comparable with different acetaminophen dose. However, that is not covered by my plan so he gave GoodRx price of over $55 for 30 pills which still doesn't fulfill my original prescription for drug to be taken ARTC every 4 hours. So yesterday was spent talking to administrator at prescription plan. Katie, I love you for all you did for me yesterday. She was such an advocate I have to give her a shout out because she stayed on the line until it was approved and enacted. PA had to call another CVS for order which they could fill with original dosage of narcotic needed. Prescription was finally gotten by 8 PM last night. Price differential, $0.44 cents for these 30 pills and I am out the $55 because it is not covered. Oh sure, I can appeal but we know that I will receive a rejection letter so why bother.

I do need the narcotic every 4-5 hours since the behind the knee block has worn off and I have ambulation and PT exercises to do hourly. I did have my first PT visit yesterday and she was very nice. Wants OT to see me for ADL's (self-care only at this point) and PT back tomorrow but will work on stairs to bedroom after a week.

Other than the stress caused by the mix-up in discharge, having to actively engage in finally getting my narcotic and having a change of heart about the PA since she went from critic to advocate, all else is going well. I am using rollator for walking, doing wash up in powder room and having to give DH directions for simple household chores (30 plus years and he can't follow directions on which button to push on dishwasher, sheesh).

Harley, glad to hear chemo is becoming more bearable and sorry that Neulasta causes such pain. Do you take Claritin before getting it? I've heard in minimizes pain.

Puffin, glad you were able to get to see neurologist sooner. You should be an acute priority patient not chronic follow-up one.

cindy, carole, Illinoislady, MM, Chris, Taco and please forgive me if I forgot your name, I appreciate your concerns and well-wishes. Pain meds do shorten memory. Sandy, sorry about the smoke but glad you are able to help sort through your belongings.

Hope everyone has a great day. Sun is struggling to come out so fingers crossed, it does. Need to take my walk.

I am not discouraged, because every wrong attempt discarded is another step forward.     -Thomas A. Edison

Carole, windy and cool today here, too.

Over the weekend we had a local car wash group offer a free car wash when you donate some canned goods. Off I went with some items for my free car wash - car covered in pollen, still had sand inside from Florida. I may have already mentioned this.

Today I was going to drop off an item at a gf house, then head to Kohls for a pair of shorts. As I got in the car I noticed something different… closer look, I left my floor mat at the car wash!

First stop, car wash. I spoke with the manager who went inside to look. No silver gray Impala driver side floor mat. I’m so angry at myself!!

You could say this is karma. As I pulled into the spot for the vacuum, there was a floor mat on the ground. I yelled to the man in the next car spot, over the music he had blaring, to see if that was his mat. I didn’t want to drive over it if it was. It wasn’t his, so I pulled in. BUT I did think: WHO would leave their floor mat?!??!

Well, now we all know the answer to that.

If you can accept the flow of life and give in to it, you will be accepting
what is real.  Only when you accept what is real can you live with it in
peace and happiness.  The alternative is a struggle that will never end
because it is a struggle with the unreal, with a mirage
of life instead of life itself.

Deepak Chopra

Cindy, I too laughed at your car wash experience because it also sounds exactly like something I would do!

Harle and Puffin, continued thoughts and hugs!

Carole, your description of the weather and making a pot roast made me a bit jealous. Weather like that is exactly why I love the fall. I can't function well in the heat!

Sandy, I couldn't make this up! On Saturday night, a home not far from where I live, caught fire. It was caused by a battery that was in the garage. The husband tried to put the fire out but the battery exploded and the fire spread quickly. They had two cats. One perished in the fire, the other was rescued but is in very serious condition in a veterinary ICU. They had just lost another beloved cat three months ago and were still grieving. Now their house has been destroyed. At least they are all okay but it the house the woman grew up in.

My heart goes out to you, and Bob, and to this couple! I feel so very sorry for all of you!

Sunny day with temps near 80 and humid. Indoors for the most part because getting out of the house is as difficult as getting in and steps are not yet my friend. PT session # 2 and she added some new exercises which are very mild compared to what I was doing in out-pt pre-op. Only once a day for them with emphasis on control rather than speed. OT planned to start next week with emphasis on self-care.

Taking my time because wound complications started right after other surgery but wound drainage mess started after discharge with first shower. Pain is managed with their multi-modal plan but joint tightness, I am assured is expected, occurs towards evening. Last decadron tonight so this may cause shift in pain level.

Am ambulating on first floor to powder room and back with 3 laps around 7 foot kitchen island to increase steps and endurance. Bladder woke me up 3 x's last night and not happy with that so will watch intake tonight. Usually restrict fluids except for meds after 9 PM.

cindyny, your story about floor mat sounds like something I would do and it did provide a spot of humor. I am sure you'll be able to find a replacement…ask St. Anthony.

carole, sounds like you are enjoying the cooler weather and caretaker chores.

Chris, hope move goes smoother than anticipated and nice that church wants you close to it.

harley and puffin, hope weekend is kind to you.

Sandy, hope you can get house to the point where you have retrieved what you can, discarded what needs to go and any donations find a suitable source. The only positive to our house damage was the benefits of the great cleanout that had been planned but postponed. It also gave us a chance to look at what the restorers were doing with less background distractions. Furniture and drapes sent out to be cleaned or floors needing to be refinished could be seen and it meant we could focus on condition of ceilings, walls and floors. We did not have wall to wall carpeting so all area rugs were also sent to cleaners. If they have to repair walls/ceilings this may be the time to consider paying for upgrade to all house AC or replacement windows. So much to consider that I made a room by room inventory of what needed to be done/replaced/purchased or my own punch list and compared it with that generated by State Farm. I had to purchase new drapery rods for primary BR because 2 were damaged (1 single window and the other a double window) but the one single was recycled to the middle bedroom since that one had been damaged beyond repair. Although they do build in "cleaning" of surfaces after they are done don't count on it and ask them to hire an end of service cleaning service unless you opt to do it yourself. Keep a list of all purchases you make including bubble wrap, cleaning products, etc and they will reimburse you. My issue was dry wall dust and insulation contamination and yours is smoke so different causation but overlapping problems with cleaning.

Illinoislady, DH has same issue as yours and he can never find the glasses he needs because I cannot convince him to have a dedicated storage spot. He used to buy OTC cheapies and put one pair on top of another until I threw them out. We have a prescription plan that we pay for OOP so why not use it! Not sure if it is a male problem?

I think we are due some rain again. DS ordered me new mule slippers since this pair has seen better days but accommodates any foot swelling. So far not an issue but other pairs are fitted and I am sure OT will make me abandon them for stair use.

Going back to recliner with ice pack for knee and elevation. Hope I can sleep tonight. Hope everyone has a good weekend.

THE OAK TREE

A mighty wind blew night and day

It stole the oak trees leaves away,

Then snapped its boughs and pulled its bark

Until the oak was tired and stark.

But still the oak tree held its ground

While other trees fell all around.

The weary wind gave up and spoke.

“How can you still be standing Oak”.

The oak tree said I know that you

Can break each branch of mine in two.

Carry every leaf away,

Shake my limbs, and make me sway.

But I have roots stretched in the Earth,

Growing stronger since my birth

You’ll never touch them for you see,

They are the deepest part of me.

Until today I wasn’t sure

Of just how much I could endure,

But now I’ve found with thanks to you,

I’m stronger than I ever knew.

Jonny Ray Ryder, Jr

Caring passionately about something isn't against nature, and it isn't against human nature. It's what we're here to do.      -Annie Dillard