My Husband, My Life, My Love, My Family, My Cancer
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I would like to sit in the creek ! Sounds peaceful and relaxing. Wonderful photos!
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Mara In your pocket for Herceptin today🌺Hope it's a smooth day!
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Mara~be safe as you venture out today. Hugs!!
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Shanagirl, I wanted to comment earlier on your post about fatigue, but at the time I was too tired to do so, lol. Fatigue is my main side effect. I feel like the word "fatigue" is too nice-sounding, actually - exhaustion feels closer. My MO asks about fatigue at every appt, and I continue to be honest every time to tell her that's the worst side effect that I experience. I've heard others say their doc prescribes a stimulant medication sometimes to help with this, but I personally feel a bit wary of another med.
If I can walk for 30 minutes, that seems to help my energy level the next day, so sometimes I just walk in loops around my house with my headphones on, listening to energetic music. But I do notice that I feel a little more tired with every cycle of Ibrance. Grateful for that medication, and these are the trade-offs we make in order to stay alive longer. If someone sees me out and about, they assume I'm fine, but if course they don't see me laying down in the afternoon, or the days when I don't leave my house at all.
Candy, I'm with you regarding being alone - since my DH died, everything falls on me. He used to love interacting with contractors, workmen, etc, and I don't really like any of that. But when my water heater broke last Winter, I had to step up and find someone to replace it. Being in charge of everything (cleaning, laundry, bills, shopping) is even harder with the constant fatigue and no one to do even something simple, like make me a cup of tea.
One lovely thing that I was able to do yesterday evening (after laying down in the afternoon and not doing anything else) is see John Legend play with the symphony here! It was incredible, and wow, that man can sing anything. Grateful to have been able to go.
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Oh my god. Had Herceptin, rides and that appointment were just fine. Only issues, my door would not lock when I pushed the lock code until the 3rd of 4th try, when I got back, put in correct code, door would not open. I banged my bottom against the door couple of times and finally it did open. Going to let management know right away but thankful to have got in. Wish there was a key to use as well as the electronics. Going to call it an emergency because the door cannot stay open when I go out
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thank goodness you were able to get in Mara…. That would upset me!!!
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@mkestrel Beautiful pictures. I’m glad you enjoyed your hammock and Huckleberries😊
@mara51506 , sounds like you are workin your plan girl. 🥰
Today is a little better for me. At least I stayed awake. I did a few things in the kitchen and straightened up. Had eggs for breakfast but felt so nauseous afterwards,felt really weak so I went upstairs and gave into the feeling. I’m really wondering if this is a virus. no fever or soar throat. Just the overpowering need to sleep the last few days and a headache & cough throughout the night. I was just assuming it’s my asthma and taking. My inhaler. But no other symptoms…….wierd
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@shanagirl I have the same symptoms except no cough. My labs i had done Monday were normal (for me) with no fever so I don't know how it can be a virus. Still, i see my PCP on Tuesday so maybe he can help. I also have SEs from Zometa and Faslodex given Monday. It's a mystery.
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DB and wife came over, removed a plate from where the lock on the door goes to, am able to lock door from inside, unsure if I can lock from outside and get back in, repairs need to happen, PM not answering calls on the emergency line, called 4 times already, not too satisfied with this. Going to leave it for now since door has locked. Have to let go of my irritation since that will get me nowhere.
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mara Sheesh what a pia, hope you get a call soon!
mkestrel Wow, what a beautiful view you have! Seems like such a peaceful place to relax and thanks for sharing pics.
sfcakes Love, love ,love John Legend! He has an amazing voice and I'm so glad you got to enjoy a fabulous concert.
Shana Glad today was a bit better. I feel like sometimes it's hard to decipher what's going on between SE's and just a cold, virus etc. Hope you continue to feel better each day.
Wishing all a restful night.
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I love all the pictures too. Here are some of my wildflowers
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Hi all and thank you everyone for your caring about us. You gals warm my heart. I wish no one was alone in this life. I'm so very sorry for you gals that lost your sweethearts.
Dh's fever broke. Hurray for that. Mel I did the every 6 hours alternating between tylenol and advil. He's still coughing and somewhat hoarse, but ate my chicken and rice. Unfortunately now our Son-in-law, who lives with us has COVID. His O2 is down to 89 and fever around 100. I hope he's able to quit smoking during this illness. DGD, who's 10, was vomiting last night. No fever. We are a mess around here and we've been extra careful to stay away, scrub with disinfectant, all the protocols to no avail.
The pics are so beautiful. I hadn't realized how bad the fires are till this evening's news. The people and the animals, oh my heart hurts so much for them.
I've been increasingly concerned about this L1 fracture as it's painful. Televisit with MO next Thursday, so if I can hold on, I'll see what he recommends. So far no loss of bowel or bladder, or weakness in legs, etc. Just painful back and burning in groin area. Shanagirl, I'm glad you had a good nap and it helped a wee bit. As both you and Mel said, the pain in the bones is pretty much unrelenting and best you can do is rest. Thanks you for the breath whispers, too Mara, I admire your fortitude. I think you should consider writing a cookbook for delicious but easy foods to make. Cookie and Intothelight, thank you again for your love and concerns. I think I'm almost over Covid, just congestion right now. Rough summer, huh girls??? In pockets for scans and all of your needs.
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it has been a rough year already for basically everyone I know. We’ve gotten Covid and I’m scared to get it again. You just get so sick. The bone pain. Hmmmmm, that’s a really painful thing to deal with. It never really does stop. But then again cancer is relentless. I’ve been thinking about Shannen Doherty and how quickly she all of a sudden died. There must have been unexpected or unreleased information on why. I didn’t expect her to go that quickly. Not to mention the only other people figure that has what we have. No one else to show what it’s like to put out there how much help we need dealing with this awful stage and disease. Olivia newton John same thing. Seemed well then bam we get the news she’s gone too after seemingly doing well. That’s pretty scary and shows you. How fast it can really move.
intolight< I hope your family feels better.Come home Booty!!!!come home!
agree about Mara’s cook book of short meals! Gailmary loved your flowers.
mae how’s everyone feeling in your world!?
love to all.
Shana~sorry about your dreaded fatigue. It just comes with the territory . It suck’s outloud! I’m up late again! Ugh. Theo had to go outside at 324 am. Hooray ! For me!!!!!!2 -
OK, the door issue is half solved by my DB, he removed the door plate and it seems to work again so as far as I know, I can safely go out with a locked door and not be locked out. I will find out tonight. Got an email back saying they never received any messages but I left four and gave the number the site shows for emergency, told them to provide the right number and to send someone to my apartment to fully fix it, they wanted me to walk around the building to find workers but that is not my job, that is where that sits right now. Not impressed with property management and would move if I could afford the rent.
I am doing some housework this morning before my appointment with the new coordinator who is looking into more services. Did a quick vacuum and mop with the Vileda spray mop, suddenly the floor was slipperywith bare feet, put on sock mops and have been walking around the floor to dry it. Still have the movie tonight which makes me happy.
Not sure what I will do for food today, possibly beans and rice with KD cheese sauce and taco seasoning. Nothing too fancy.
I hope everyone has a good day and in pockets for those who need pocket duty.
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I think I've missed a bunch of posts. I see something I think I've already seen and it's dated July 7. Today is the 25th. Weird…
I love the creek photo. It looks so peaceful.
Saw my MO yesterday. TMs are continuing to climb. She went over the Guardant360 results with me. We don't have a lot of options, and some of those we do have some pretty nasty SEs. Others are good a particular mutation (ATM) but not with breast cancer.
I asked her about getting a second opinion at UCSD as they may have more clinical trials available. I didn't want to ask her, but she said, Carol, I care about YOU. I want what's best for you! I told her that I have no intention of leaving her as I've been very happy with the care I've received with her and with Scripps.
Got my Faslodex shots, kids are leaving today with our new granddaughter. It's been a wonderful visit. I think Mom is worn out. Baby is two months old, and this is their first. They're such good parents.
My house (mostly the floors) is/are a bit of a disaster with DH and DS going surfing every morning, tracking in just enough sand and grit to make the floors a mess. But it's all worth it.
Hope everyone has a great Thursday.
Carol
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OK, while the person assessing me for health services that I might need and asking a bunch of health related questions was here, a person came to install a new door plate. Door is fully fixed and working. The person here asking questions asked if I was bothered with my health information getting out with him, I said I didn't mind. Does not matter if he knows I have cancer. The one service is a PT referral again and putting me on wait list for home services like grocery shopping etc. Would have to see how much the grocery shopping would be, could be cheaper to get Walmart delivery. Health worker also suggested rolling a garbage bag down the stairs instead of trying to carry it. Had not thought of that. Might see about that or just do lighter bags.
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Good afternoon
I had a bout with mouth sores last night. It seems one spot hurts when I lie down. I contacted doctor. Bc this is 2nd time I’ve been awakened by pain. The magic mouthwash tea tree salt gargling all temporary. Maybe it’s infected. They responded but I need some other options.
@shanagirl im glad you were able to do a few things today. I can do a few things too but sometimes I feel like I need a nap just to make it back from the kitchen to my bedroom. Once or twice I’ve felt so fatigued I laid on the floor for a few minutes. Two more pill left in instance pack before the 7 day break. Ugh.😩
@gailmary the coneflowers are beautiful. I had them when I lived in NY. Florida is difficult for some flowers 🌸 (sand for soil).
@irishlove i had a fracture in my l1 twice. I had khyphoplasty twice. It seemed one side fractured and then was repaired and then a year or so later the other side fractured. Two different surgeons.
I forced myself to swim today bc I do sleep better after some exercise and yesterday I didn’t swim. Looking forward to seeing my granddaughter and my 3 great grandchildren next week. They’re supposed to come to FL from GA. I haven’t had an update on where they’re staying but I’ll take the promise.
Take care all
Tanya
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sunshine So glad you had a nice visit with your kids a new GD. Babies bring so much joy to the family and I hope they get to visit frequently. I think a second opinion is a great idea, your more than worth it! Love that your MO is open with her feelings and of course want s the best for you! Hoping you get some promising options.
mara Glad to hear the door is fixed. Sounds like you had a good visit with the healthcare worker. Hope they can offer you some helpful services.
gailmary Love the beautiful wildflowers, so pretty. Trying to keep my perennial's alive, it's been such a hot summer. They're barely hanging on.
Irish I hope it doesn't run through the entire household.Glad the fever broke , hope he had a better day today. Hoping the back pain doesn't get any worse and your able to rest.
Hi to all and wishing all a restful night. Looking forward to low humidity tomorrow and the weekend!
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Sunshine, glad you got to visit with your granddaughter.
Tanya, glad you enjoyed some swimming and will likely get some really good rest tonight most likely.
I had a good day overall, best part was going to see Deadpool and Wolverine, best movie I have scene in years. Love Hugh Jackman and Ryan Reynolds together. We will see how sleep goes but I do not mind. Waited a couple of months to see it and it was well worth the wait.
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mara happy to hear you loved the movie. anymore I feel like they are so far and few between. how did you make out carrying your snacks? Did someone help you?
Tanya Hoping you get some relief with your mouth soon. Were you able to try the mix that Mel uses since she finally had better success with that? Hate to hearof you ladies suffering with mouth sores, they are awful.
Glorious morning I am finally sitting outside on my back porch, drinking my coffee without humidity and a perfect 70° degrees! Thankful for small things.
Sending healing vibes to all who are struggling 💕
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my son went to see that movie last night and he enjoyed it very much! He said it was very funny.
Tanya I can relate to the mouth pain. Boy can I ever. I finally got demexthesone ( sp). From my palliative care doc. It really does make a difference. You should definitely be like. Snap snap now please!!!4 -
Morning all. The more I read about CRISPR the more impressed I am with the outcomes. I do believe it's the future treatment for many diseases. This last article touched my heart as it related to treating prolegia, the aging disease of youngsters. They've had great success with those darn mice again. Here's hoping it's fast tracked for many diseases.
Oh Mel, thanks for thinking of Miss Booty. I look everyday on different sites. Then I get so sad and upset. Still have some symptoms of Covid, but better. DH is not better, so he's heading down to the the free care clinic that his Dr.'s practice runs a few hours on a Sat.
Last night I became very painful, burning, numbing from waste down to femurs. Including bottom and genital area. My legs were so weak and so I finally said let's go to the hospital. It takes a lot for me to give in and I was just inhouse for bowel impact, so not looking forward to this trip. But I recall reading about cauda equina (sp?) and didn't want to take the chance. The pain level was 9 to 10. SO they did an MRI and spit out scoliosis, yada, but no cancer causing the problem and no spinal compression. THis guy didn't even find a problem with the L1. I think that's the area that was radiated 3 months ago. So one of these days I'm going to purchase good insurance like a PPO, and go see specialists that will give me answers. Otherwise I have to go thru my GP and wait forever for referral and then HUmana says NO too often. DH and I are talking about selling the house and using the equity for medical treatment plans, and then renting. I love to decorate, but I don't love the worry, especially hurricane season. We'll see.
IN pockets for all and especially pain free days.
O
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Irish, hoping you feel better very soon and perhaps the PPO would be a good idea for more thorough answers. I am sorry about all the pain you had. I am in your pocket always.
I am putting together a grocery order for myself with Walmart, decided to sign up for the delivery service as it is cheaper than the amount I pay now at 12.97. Also going to drop netflix as I can finish cobra kai before the end of the month, dropping Disney as well as I have forgotten what I signed up for. Grocery order has quite a few pasta, need more lentils as well and finally a pizza, figure I can precook pizza, slice up and do different topping like cheese and eggs for example. Sticking as close to the 35 minimum for delivery as I can and no pot pies, still have plenty in my freezer. The delivery allows for a second trip in the month as needed. Figure since DB is getting tired from working a lot, need to have food to go a few weeks without shopping. I did sign up for the 9.97 a month plan, only cost 5.00 for express 2 hr delivery which is just fine
I am also in two of the portable washers trying to keep up on laundry since tomorrow is blanket day again. I really did enjoy the sheets this past week. I do like the little washer but it was really a silly purchase on my part, no need for that at all. I do need to watch my impulse buys and try to save money instead since there are not many channels I want or need to keep.
Grocery order from Walmart arrived in less than an hour. Lots of stuff for not too much money. No black beans so just got extra lentils. 5 of the frozen fettucine alfredo, can add lentils shred cheese and eggs on top, simple and easy meal, pizza, sour cream. Still have a lot of pot pies so did not add those to my purchases, no chips this time, been getting pringles on amazon when I save enough. Overall, the Walmart Delivery pass does afford more deliveries a month if need be but still no more expensive than if I order one per month. Bonus, this delivery was here within an hour and did not make my freezer explode. I also cancelled a couple of streaming channels I had since I already watched what I wanted to. That assists in paying the Walmart Pass.
Edited, used a fettucine package, opened put an egg in, poked the yolk so no explosion, shredded cheese and some beans, garlic seasoning with sour cream seasoning and salt. Put in microwave for 4 min and 30 seconds. Combined on the plate, did not add any mayo or anything else, it was delicious and filling. Had some M&Ms after. Unsure what to have later. I do like cooking eggs and other things in the packaging so much that I might try eggs again, cleaned out the fettucine and see how it goes later, I will see.
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I chopped off the end of my post wishing everyone a good day and in all pockets where needed.
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@mara51506 I do Walmart all the time and for a family of four it is easy for me to reach the minimum $35. It has been a game changer for me. My DD doesn't have to run to the store or stop by after work as often. They are a little more limited than some grocery stores here, but they offer everything I need. If I want something different, my DD can go to another store on one of her trips. I buy food for dinner for the four of us plus lunch and breakfast for my DH and I. I can also buy things other than food which is good. With quarterly runs to Sams we are covered! I watch Amazon for price comparisons.
@irishlove So sorry you are struggling again/more. Sounds like you need a break!
@cookie54 It is interesting how life's little pleasures like drinking a cup of coffee outside have now become so important.
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Intolight, the items that I buy if DB goes to Costco are milk, eggs and cat litter. Beyond that, the way I eat, Walmart makes a lot of sense. Amazon gift cards earned on survey or game sites purchase cat food and peanut butter at a reduced price.
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Hi ladies,
I made it home yesterday on like the worlds longest day, but I made it, with actually not many painkillers (uh, paying for that today lol) and only one small break down. Resting today and watching some Olympics on the European feeds.
Unfortunately my mom is clucking around like Im dying and its driving me up a wall. They got out my dads old walker which is helpful, but that was a bit much to see. The worst are the deep gin thoughts she delivers for hours on end at cocktail hour in the evening (how she manages HER hip pain) about oh you know who died and committed suicide? and you are just going to have to accept people helping you. Well sure, fine, folks helping at the airport (Heathrow was amazing) and asking for help sure, but being constantly asked do you want this, do you want that, here you probably want this (I dont), etc. She even put a barf bucket next to the bed :( All her references for cancer come from caring for her father who died 40 years ago of melanoma. On the plus side she called the hospital in Milwaukee and arranged for me to have a wig consult on Tuesday which was probably the most valuable and loving thing she could have done. Dad and I are doing a daddy daughter trip to the medical sock shop.
My dad well, he knows the score about pain and working with bad body parts, etc so he's given me some space. Its a bit of a relief to just sit with him and listen to him go on about garden plans even if Im only half listening.
At any rate, Im happy just to be home and spending time with them and a different environment. Things will iron out and settle down. Except Tuesday when my aunt and uncle are apparently coming by and mom wants me to tell them now (its a fairly special relationship I have with them). My aunt just had a mammogram recall. THANKS MOM.
The iron and blood Wednesday helped but the iron really gave me the runs quite a bit which has been annoying. But I will say its fab having people make me food and bring it to me:) Hubs is reclining with a beer and a nap today and he is happy like a pig in mud with a car to go get 'stuff' lol. If he's happy and having a great time, and is getting fussed over as well, then Im happy too.
Ill check in time to time but Im going to try and clock off from cancer as much as I can.
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Sondra, someone fussing over you is probably the thing you needed without realizing it. Moms certainly can fuss over you like that for sure. I am glad you are out of hospital and glad your husband is happy being fussed over as well. In pocket for less pain as well.
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enjoy the fussing as long as you can. Cancer is like a merry go round that never stops. Other people get on to ride with you, but there turn to get off always comes. Ours does not. I would love nothing more to have my dear sweet mother fussing over me. Now all I can do is talk /pray to her. Talking with Dad sounds special. I’m hoping your visit will bind your family even closer.
Irish~I’m hoping you get a break sounds like you could really use one. Thinking of you.
seeq~ you doing ok out there?
intolight~ I use Walmart as well nothing like their curbside for sure. My DH has been saying lately that Walmart and Aldi were worth going to vs giant. That giant was way too expensive. What $200 would get was 8 bag of groceries. Now you only get 4 bags. When you unpack it you don’t know what you bought because it’s not a lot. It’s ridiculous!!!I’m having insomnia again.its a kicker. Makes for a long night and longer days.
I used to go and have my nails done every 5 weeks and when I got Covid I stopped going. I decided I was going to do them myself again with the sally Hansen gel nails. Well I’m pleased to say that my nails have all healed and are all back to the way they were before I had tips on some of them. But that ruined my nailbed. Luckily it healed. I’ll never do that again!!! Ouch!!!happy with what I have now by far! Going To try to count sheep. Caught some of the Olympics today. It was very entertaining, usually I watch everyday I’ve always loved the summer Olympics! Go USA! Go UK! Go Canada! So much fun to watch!6 -
Yes sir, cancer sucks. And so does this pixie haircut I got. DH says I look like woodstock. lol. On the hospital trip, they gave me morphine and pushed it slow as I complained how I reacted to it. That worked. Obviously happy no spinal chord compression or lesion (which I think covers both MS lesion and cancerous lesion). Got home from the hospital after 9 hours and proceeded to vomit. Guess they didn't push the morphine slow enough. Today I'm fair to midlin. Still have symptoms of Covid, but poor DH is really struggling. His trip to Dr. office they gave him "Z" pack. No chest x-ray. That kinda aggravated me. Been down this path before and Covid wound up affecting his heart. SO we have a deal, if he doesn't sound and look better by Monday, he must go to urgent care for chest x-ray. His O2 level seems fine but he is so hoarse and coughs way too much for it being day10. Kids have it, too, but they seem to be recovering. Lots of chick noodle soup that I made and rice and curry from local rest.
Ah Sondraf, I get the fussing gets old, but how I wish I had my Mommy or Grammies to take care of me. I recall being diagnosed and curling up in a fetal position crying for my Mom. She gave birth to my sister at 17 and me also at 17. Then two brothers came along in the next 3 years. She was a gentle, sweet, soul and also a broken bird. He beat her until she was so battered and was committed to the physchiatric hospital. Grandparents stepped in to care for us. They were our saviors on earth. Mom never truly recovered, but she did remarry and gave birth to 4 more children. I tried to stay as close as possible to her and the kids. Her husband was a heavy drinker, not very nice man. She passed away right after Christmas 1994 and I had no idea how sick she was from metastatic b.c. She was 55. Mel, I truly understand your missing your Mom. All we can do is remember the love they gave us to carry us thru this life.
In pockets for all your needs.
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