My Husband, My Life, My Love, My Family, My Cancer
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Hello to all on a Sunday morning.
Mel- Sorry for your insomnia last night. Hope you finally got a few zzz's.
Moth- So sorry for what your MO said. Seeing it in writing is so surreal. Still seems unreal to me that I have a terminal illness.
Dutchiris- Hoping you are feeling some better today. But you need to get the new pain issues checked out- maybe they can bump up the scans.
Not much here. Picked up WalMart purchases yesterday and did laundry. Nothing to do today. Our State is still in lockdown-- till May 30 -- with new cases and deaths each day. But yesterday was sunny and in the 80's so people out and about (reported to me by one of those people). I feel like I am living in an alternate universe. I stay in, and will continue to do so when things open back up. The virus is still out there and I fear getting it. Also, I don't feel like running around doing things. I walk like a tin man and I am tired a lot. I don't feel like I have things in common with my friends anymore. We are walking two different paths. Another of our sisters- Pajm- is gone. 2 back to back. Makes it real, you know.
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Santa,
I like what you wrote, and believe it is very accurate what MOs must go through to navigate this crazy disease. Some are good at relaying info, some not-so-much. But please continue to bring your wisdom to these pages. I get a lot of info. and great advice from you. Bless you, my friend.
Mel, I hate that you have insomnia. I just hate it when I’ve had to lay in bed with no hope of sleep. Try (this is hard) not taking a nap. See if that helps. You will probably stumble around from exhaustion at dinner time, but it’s likely you’ll get to sleep. Hopefully, it is not from any meds you are on. Thinking of you...
Which brings me to my question of the day....are there any pain meds, OTHER THAN OPIOIDS, that work? I am like you, Moomala.....Mets and fractures in my back. I had a bad row awhile back with opioids, and do not want to go there unless it’s the last resort. Do the pain patches work? (If there is another thread that covers this, please let me know. TY).
Happy Sunday all. Love to all
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I am not walking outside today though it is sunny. Decided to have a relaxing day inside making my pennies off my earning sites and want to finish my book so I can read another. May do the treadmill over a couple of hours with walking to a song and taking a minute off. Still keeps my body active without killing me and probably more laundry. I had dye leak all over white cloths and nothing worked until I soaked overnight with bargain branded oxi clean. They look nice again. Also will be looking for a new show to watch as well. Not sure what yet. Tomorrow is May the 4th which to a Star Wars nerd like me is big so saving movie day for tomorrow. Should be a fun thing for me too do, order some movie popcorn and just enjoy myself as I do not go out to many things even when not in quarantine.
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I get ugly without a nap my body just caves into itself in a lump. It's my own fault I've been taking my chemo too late at night. I'm going to fix that tonight. It was a rough nights sleep. I'm already thinking about bed.
Santa~ Waving to you hope you have. A good Sunday ! It's not raining which makes me happy. I want this to be over with and have a healthy society again. Trying everyones patience for sure. 70 here today.
Mara~Waving to you.
Candy~I'm like you. I will stay home as well. Happily But when I want to do something I want to do it lol. I am getting a new phone for my birthday. I would have rather been able to see it before buying it. But only online purchases. So I'm excited. This week on Friday alone I have three deliveries coming. Doing early Xmas shopping as well Got a huge start on that!
BooBoo~Hi there sweetheart! Lousy night of sleep. But naps are a must. I try so hard but at 300 ish I feel physically ill. Even if I don't sleep I need to lay down. Somedays (rare,rare) I'll not take one. Depends on mister Adderall. It's a crazy world with MBC....... hope you're doing ok my friend.
Dutchiris~ hope you're doing well today.
Beesy~ waving hello. Moomala. MJH, Minnie, Sondra, Simone,Rosie,iwrite,Dodgersgirl, Philly.Karen Mae.....Moth...Jensgotthis, lynne(50's) ❤️ Grannax. Hello stranger. Hope, Runor,Elderberry,stillivin, pots, Tanya, anyone else I missed I'll be back! For sure!
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Hi Mel. I am staying home, and will continue to do so, but not happily. Yes, when I want/need to do something, I want to be able to go do it. But missing activity too-- church services, volunteering, etc. House is quiet and boring. It is weird--- my mind races wanting to do something, but my body rebels with aches and fatigue. I was working full time up until last summer, so just now one year. So in last year went from full time employment, to retirement and doing some things still, to doing nothing now. My mind still wants to be active. Feeling depressed. Try to call friends or text them, but they are all busy with their own lives and families. Maybe I should do some online shopping to occupy the days, but on a limited income-- SSD. Sigh....
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Candy, can you order stuff from dollar tree or something, just little things. I heard you about SSD, mine is disability or ODSP and not worth much per month which is why I need to earn some pennies from my earning sites. That is the only reason I can buy some of what I have done. I can usually get groceries for free with rewards from my loyalty credit card, earning sites etc and I don't buy much. Usually queso, tortilla chips, cheese and spinach and beans. Inexpensive and lasts a while.
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Mara- I did order 2 pairs of jeans and 2 tops this spring. But have to watch funds. My health insurance is horribly expensive too.
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Glad you got some clothes and I hear you about the funds.
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The funds are why I’m starting Xmas shopping in March. I have to spread it out. I do have my DH. Luckily he makes a good living. But he’s frugal and it’s rubbed off on me. I have all the ladies done on my list except one. For Christmas. Even just grocery shopping I have to watch every penny. I like our finances separated, I need to feel control over my life somehow. Makes me feel Some sense of independence. Everything is a challenge for sure. My only haven is sleeping. But I keep having this reoccurring dream about a cruise ship (which I hate) sooo weird. We went for a ride outside. It’s magnificent, we didn’t get out of the car. Crazy no social distancing going on there. It was 80 here today. Just lovely.
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Candy~glad you got some things. I have issues with clothing. I’m like the straw man of wizard of Oz. Put back together all weird. Lumps here but not there. It’s a glorious mess. Spring has sprung for sure..
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Mel, gotta love those recurring dreams. Mine are always the same just before I wake up. In the dream my whole family including my younger brother are running a restaurant. Usually I wake up shouting at people (out loud) about something they've done. My younger brother is usually the one I am shouting at for taking money from the cash register. One time my niece got in trouble for not being nice to customers. I can only reason that my brain is just dealing with issues whilst I am asleep and clearing out toxins. I imagine if someone lived with me, it could get very annoying. Another dream I have had is about a highschool boyfriend that I had a hard time letting go of. Usually in that dream, I get to react to things better than I did in real life and realize he was not the be all and the end all. I don't usually shout in that dream.
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Thank you, Candy and Mel, for thinking of me. 🙂 Last night was a better night. I walked about 2 miles i the evening Then had a glass of wine and listened to music while relaxed on the swing in my yard. I slept well without much discomfort. I have been taken more Tylenol over the past few weeks. I usually don't take any.
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booboo - for pain, have you tried gabapentin? I had deep taxol pain in my bones and muscles and gabapentin has helped me
As for nighttime and insomnia, I only sleep because of zopiclone (full dose on steroid days otherwise 1/2) and gabapentin
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Too much going on here to keep up! Not great that some of us are dealing with pain, I hope a solution is found and results are both accurate and combined with a next step. I think pain is part body, part medication and part mind. Can’t control the meds, but can balance them out...might be unable to move in the morning, but can do much more in the afternoon and so on. I hate not being able to choose my food, but my DH doing a great job...at least I can eat, exercise, manage the pain and grow stuff. Much more fortunate than many of us at the mo and very grateful for that.
Ps I do hope the Karen mentioned in a recent post in the same breath as a troll wasn’t anything to do with me!?
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Mel- I have issues with clothes too. I never liked clothes shopping. I NEEDED some new clothes due to weight gain with the meds. But things don't fit right. Boob prosthesis is noticeable--rides up, so breasts are uneven and doesn't look like the natural breast because of no fat on top or under arm. Very insecure of myself above the waist. Then I bought a new pair of tennis shoes. Always wear the same size in sneakers. Current ones are couple of years old so well worn in. New shoes fit too tight--even though same size. Noticed my ankles are more swollen. Combo of swelling and I think the untreated rheumatoid arthritis making the ankle bones bigger. So shoes look funny with my swollen ankles poking out the sides of the shoes. I hate how my body looks now. I never was a beauty, but I look older and full of scars. Weight gain, boob issue, and short chubby legs with fat ankles. Fun, fun.
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Hey Gals,
Love and hugs to all of you having pain, insomnia, feeling down......We all have our times "in the barrel" and it is just plain ugly.
Today I won and MBC lost. I can't remember having had a day like this in months. I stayed in the moment. My girlfriend dropped off pansies down by my mailbox. it was sunny and 65. I planted the pansies. I listened to and watched birds. I sang really loud to 70's rock while I made dinner of the freshest scallops that our supermarket had on sale. I felt like myself..... It was rare and amazing.
I'm not sure if it had anything to do with fact that when I got up yesterday everything in my household felt entirely wrong. I'm saying to myself "This family get's the dysfunctional award of the century". Everything bugged me and I just melted down. My husband came upon me in the barn, trying to put a little pop up greenhouse together. I was sitting on a little camp stool and I was howling, and sobbing out of control. He kept asking me to talk about it but, I am sorry, it was just NOT happening. I told him I did not expect him to fix it and that it would go away in a bit. And it did, and I felt better.....
Yeah, so I just sneezed and wet my pants....gotta love it gals
Hugs to each, Mary Jane
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Candy~ I am always in sweat pants. Then it blends in better. And I hate the heat because of tank tops. I also canttolerate heat heat anymore. I need lake and a breeze and I'm happy. Dressing me is like a job. I always feel so clunky and lopsided. I used to love my little wardrobe. Could wear anything. Not anymore. ☹️
MJH~atta girl. It sounds like such a lovely day for you to have. I kinda feel like there is some
Dysfunction inn my house as well. My son is clueless and I know it wears on my DH's last nerve. I can't disagree with the points he makes. But it's my son. It torn between tough love and my dh being correct. I want my son. To do more around. The house. He doesn't. He should. It's annoying. Why is it the boys? My dd has her own place now it's always clean and nice. Why are boys slower to achieve this knowledge? I want scallops! You make me smile I love. Seeing your name here. Serious OG checking in here ladies. Hugs to you sweet sister. 🌻🌹 ((Happens to me when I sneeze or cough
Karen~ no trolling here, I don't know what post you meant. I'm always glad to see you here.
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No, no, no, nothing to do with our Karenfizedbo15. Someone was talking about mean people on facebook, and someone said there was a Karen or troll in every group. Not sure if that slang term is used in Scotland. My kid explained to me recently that a “Karen" is an entitled, complaining, middle-aged woman who always wants to speak to the manager or get her kids special treatment. I guess they picked the name because of its popularity in a certain age group? Too bad, because I know more than one person named Karen who is perfectly nice.
Mary Jane, I love those kinds of days. So glad you got one!
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Heh - I got an update from my brother undergoing the Head and Neck cancer regime (its only 7 weeks! pffftt) and he was complaining about this total Karen in a blue polka dot sweater who is always hovering, waiting for his chemo chair to come free. He is doing well and has about two and a half weeks left of treatment, but says everything tastes like ash due to the rads and chemo. Parents drove out to Palo Alto (from WI!) to pick up the grandkids and take them back to Nevada because it sounds like this last bit is going to be real bad to deal with, never mind also having a 10 month old and 5 yr old about. Brother and I were estranged for some years before this due to I didnt agree with his choice of second wife and well, I guess the benefit of cancer is that it brought us back together, even if I cant commiserate over the chemo issues!
Things here going well - the new place is so much more soothing than the old one. I got a frantic call from the handyman at the old place that apparently there was water running down the walls in the downstairs bathroom, so we got out JUST in time as it started the day after we left. The landlady was so cheap she would never just FIX something, just patch things together. Anyway, I wonder if the new people got to move in on Friday as they had to take down the ceiling in that bathroom and will now probably have to rip out the bathroom upstairs as well. Not my problem anymore!
New neighborhood is nice and a lot of community happening. We visited with our friends on the corner last Thursday for an hour and a half (outside at 6 ft apart) and it was great to talk to someone else, even though standing that long didn't feel great on the ol pelvis. Ive been doing more yoga and band work for strengthening and finally got my new adjustable barbells out of the box yesterday and started doing some (light!) upper body work. Lifting weights makes me feel so much better than cardio and it really helps my lower back. So ready to get out of the house now, though, and do something else - like go to a restaurant at the very least!
take care everyone!
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Yikes...Might need to change my name! Never heard of a ‘Karen’ before....my DH thought that was hilarious.
We do have names like ‘ a wee Mary’..meaning someone who follows all the trends attitude, hair, fashion and make up wise whether they suit her or not. One of my oldest and best friends is called Mary and she def does not fit with that description!
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Morning all.
I have never heard the term "Karen" to describe a woman. Must not be a Southern Illinois term. I am sure we have slang words, but cannot think of an example just now.
MJHJAN- Glad you had a good day. Those are rare for me, but I love when I have one.
So, I need some ideas on things I can do while isolated. Let me explain. I have a guy friend--I have mentioned him before. We text a lot. He will text every morning as he is going to work. Why? I don't know. Kinda wish he would stop. Anywho… He will ask what my plans are for the day. After retiring, I would text " Today I am going to the church for a few hours as secretary" OR " Today I am going to ___ committee meeting" OR " Today my sister is coming over and we are going out to eat lunch". So now I cannot say any of that. But I have a good excuse---the shut down, the virus. But.... when things open back up I am going to need to be careful still. I will probably not do those things due to not wanting to catch the virus out in public. So, for example, today I texted " I am going to make out some bills, that is it". What can I do to occupy my mind when I need to self isolate and when I feel crummy physically? I don't garden. I cannot stand the heat of summer--being out in the yard. I need something inside that can occupy me. I have thought about Ancestry.com. Looking up my ancestors. Not physically demanding. But mind using. I know there is a fee---my fund issues. We have a genealogy department at my local library and that would be free, but, yet again, they are closed now and when they open it will be a public place to spread the virus. I am going stir crazy with the long endless days of nothing to do. And I don't see an end. I think the virus will slow in the summer, but I think we will still hear of cases in our area. And I don't want to be one of those.
Thanks for the ear. Love you all.
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Hi, Candy,
I think that genealogical research would be very interesting. I agree -- ancestry.com is pretty expensive. I would also like to get into this at some point -- I have some starters with the free part of ancestry.com. But I'm pretty sure that if you look around on the internet, you may find other sources of information that are free to you. For example, I know that the Mormon church has a huge genealogical database that I believe is free and searchable via the internet. I know over the years I've seen others, but never pursued them. You can also pull up info from library databases without having to go in.
I don't know how you do all of this, but it would definitely be something to occupy your time and your mind, and I think you can do it more cheaply than ancestry.
Good luck -- and if you figure out any tips, you can post them here!
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candy you can get started with free sources. I am kind of obsessed with researching my family tree. If you have any names to begin with, you can google the name and their city and see what old archived newspaper info comes up. Lots of old newspapers' archives now digitized.
(Due to a death notice and a notice of sale, I discovered that I had an ancestor in NYC who owned land on the corner of 57th st and 5th ave.... In 1860. Which got sold when he died. Bad move!!)
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I start cycle 4 of Ibrance this week.
I saw my MO last week who tested my blood to make sure I was.a go for next cycle. ANC above 1 so was cleared for cycle 4 but with dose reduction. Dose reduction resulted in new RX. This was electronically transmitted to my specialty pharmacy.
The next day I called specialty pharmacy to verify they had my script. I think I posted here that I spent 3 1/2 hours on the phone with no real results.
Friday I talked with MO’s office, specialty pharmacy customer care, and pharmacist multiple times. By 415 pm I was hopeful that my RX issue was resolved.
Today my Ibrance was delivered! Only took 9 hours of my time to get RX processed.
Got to be an easier method.
I still don’t have my 2nd RX from pharmacy but it’s not as time critical so calling mail order pharmacy is one of today’s tasks.
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As far as what I try to find to do. I start small. I try to exercise most days, mostly walking at this point. I like to walk to a song, take a minute rest and walk again. Change the speeds to, go 3.5 mph for a song and then rest and water, then slow for a song. I just cannot stand walking a long time as it is boring. Doing it this way occupies my mind more. I usually go for half an hour of this after meals. I don't go out a great deal because I would simply spend mindless money. I am OK staying in the bulk of the week. I would like to go to the dollar store, but all I would do is come home with laundry supplies. I already have enough laundry supplies to keep a large family going for a month, let alone me. I LOVE oxygen bleaches like oxyclean since everything comes out beautiful, even dried up dye transfer but I have an 11 L container full.
The other thing that keeps me occupied is making my money online. I don't make a lot but it really is nice to do so I can spend more on groceries or takeout. I also enjoy exploring all the things I can give mexican flavour to. Today, I took a scoop of Mc D's poutine, half of a harvey's burger, beans, bran shredded cheese. Microwaved for 2 mins to melt the cheese. Then I took it, sliced it up and put a small amount of queso and a small amount of tortilla chips for an extra crunch. It was delicious.
I try to find something I can solve or do better every day because it gives me something to do and learn. I am still listening to audio books because they are enjoyable. I now call older brother and SIL each week and my phone friend Shirley on weekdays. Keeps me connected to the outside world. These are small things, but easiest for me to cope and not have a lot of bad days either.
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Thanks Bev and Santa for the recommendations about ancestor searching. I think when our Library opens, I will call and speak to their genealogy department and see if they have ideas for me to do some research online in the safety of my own home.
Dodgers- Yes this MBC is a full time job sometimes. I have been calling the billing department of my hospital/cancer center concerning my bills. Sometimes that can be very time consuming. And then the pharmacy, and any other issues. Good luck.
Mara- The small things are just as good sometimes.
Today my sister and her children (son age 18 and daughter age 13) came by my house. They were out and stopped by. We talked in the yard--6 foot distance and not allowed in the house. That was nice and broke up the day.
I just wish I had a project to occupy my mind and give me something to do. Kind of embarrassing to tell people (guy friend) that I have no plans for the day. Esp. when people are so busy in their lives. And also I am going stir crazy with nothing to occupy my mind.
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Candy, something sometime will spark you. Also, don't be embarrassed to say you are at home, anybody who knows you, knows your health status.
I had a nice nap with the cats, had planned for an outdoor walk, but got tired instead. Listened to my body and dozed lightly. Was very nice and cool with my AC on.
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OK Candy, can you sew? Try ‘shopping your wardrobe‘ What can you chop up/ adapt? Do you have a camera / phone.. try taking a daily diary pic of your local views over the next few weeks...what is in your pantry that’s been there for ages which you clearly wanted in the first place? Can you google recipes including these and freeze if you don’t fancy them right away? I’m just getting to this kinda stuff myself!
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Mara- A nap with the cats sounds like my type of woman. I love resting with my fur baby. So peaceful. And he loves it too- purrs.
Karen- Good ideas but I say I am domestically challenged--cannot sew or cook. My sister is a wonderful cook, always trying new recipes for her family. She too thinks I should take this time to learn to cook. But I live alone and just don't have the desire to cook, esp just for one person-me.
I like to come here just to voice my thoughts. Ok here is one from today.... My nephew- sisters son- came by today. He is 18 years old, just starting his adult life. Healthy. Smart. He said he had a box of masks he got somewhere and was going to keep them as a souvenir of the 2020 Pandemic. He said maybe after many years they might be worth a lot. Hahaha. I got to thinking about what he said. I can see where he is coming from. I too would be thinking that way if I was him. He will have this time to share with his children one day. He will have the memories of the Quarantine, the businesses being shut down, the Stay at Home Orders, the Social Distancing. I pray he has a long life and can look back on this time with a smile. Then I think of myself-- the fear, the loneliness. And I think I would like to have that box of masks to USE to protect myself from the virus or just from the regular colds/flu with the low counts from the cancer treatment.
Wow, how different the Pandemic can be viewed by 2 people.
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Candy~that’s an interesting way to look at it. I know that I would be in awe of a package of wipes. Or a bottle of Clorox spray. It would shine bright like a diamond (Rihannah) like mister cleans bald ass head. I saved my original stimulus check , to save, the one from the pandemic. Yeah I’ll be holding onto that one. I did the mobile deposit. Then you get to keep the check. I just want it. I’d also like to have Lysol. !!!! I just wish stores would open up again. I really do. For all of our mental gain.
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