My Husband, My Life, My Love, My Family, My Cancer
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not having issues with masks luckily. Dh makes them. And other family members have been given them at work. I don’t really Go anywhere. Just have them for protection. Not taking any chances. Dh is making more. I found more fabric. I wish I knew how. I would do it all day. Little breaks. But I would love to donate them.
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candy, you're asking a good question. We have a jigsaw puzzle going on the dining room table for the moments when we need something to do that is a challenge. I think you may have a project already writing down the different perspectives of covid being experience by your family members. You could put it into an electronic book format, maybe with some photos...about what life looks like. And on the genealogy side, if your family came from Britain then a lot of those records are available online esp. church records. Europeans use Geni which also has a free component. US Immigration info is free online for Ellis island. I think getting up and getting dressed is already an accomplishment!
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Indiana Jones-level treasure discovery: when I was moving my hoarder ish Mom, I opened a random cabinet and found about 50 packs of TP.
We brought it all!
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Santabarbarian—. 50 rolls of TP!! You struck gold, for sure!
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Candy— do you have a lot of home photos that in print only? A project could be to digitalize all photos or old home movies. You could further organize digital photos in family groups to give to others in your family
Do you have hand written recipes? You could create a digital “Candy’s Treasured Cookbook”
As someone else suggested, a journal of the Coronavirus experiences from varying points of view would be interesting. Even getting down to something like mail being delivered. What’s the mail carrier thinking? What does your cat think a mail carrier is and what’s he/she doing? What does mail mean to you? Do you disinfect? How does that make you feel?? We are living thru historical times. Documenting that would be a national treasure. Oh- another example could be as simple as the Coronavirus inspired commercials. Anyone else think of Schooner Tuna, the tuna with a heart??? That was the commercial designed in the Mr Mom movie. When these new Coronavirus commercials air, we always say out loud “Schooner tuna, the tuna with a heart”. You could write about theses commercials in your journal. When you finish, maybe you’re church would be interested in your historical ex
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I was at the dispensary yesterday and on the way home asked DH if he'd roll past the kids' houses and just maybe they'd be home. My daughter was home and we cried and cried. DH and I stayed in the car and she was on her porch about 30 feet away calling out to me "I miss you Mom".
My son was also home but he was cooking a complicated dinner and had about five things on the stove at once. But he still ran out the front door with no mask and approached my car as if he was going to jump in. I had to stop him and tell him "hey six feet dude!"
But they both loved the surprise and boy so did I. It was like regular life when you could just feel free to go anywhere at anytime. This morning I am feeling ANGRY that we have to do this. I'm not angry at the government - no way because I think they're right and they're using lessons learned from the Spanish flu to guide us during this - but OMG angry at this virus for stealing a part of my life away. Just like cancer has stolen from me. I realize I had it so great before this. Life was pretty fair with the usual ups and downs but oh man this is a lot of unfairness.
BooBoo I wanted to be sure not to forget to answer your question about pain meds. First of all I'm too lazy to look back but did you say that you were working with palliative care team? This is invaluable and they are good guides for helping you find just what works. My current treatment with them is 900 mg Gabapentin a day, .50 medical marijuana 4-5 times per day, and one Advil with a Xanax at bedtime. This doesn't take away all the pain but it works well enough for sleep and for a large part of the pain. If I take Tylenol instead of Advil I'm usually in a LOT of pain the next day. So anti-inflammatory is the route for me. Palliative wants me on oxycodone but I keep refusing. I don't need more SE's and we have a history with a family member who was an addict and it changed her immensely. To say I'm scared of opioids would be an understatement. Palliative care understands this and is being gentle about it. My PCP made me a list of pain meds that can be used before opioids. I can't remember them all but they were things like Gabapentin, Amitryptiline, etc. I do not have bone pain so this may be a different situation than yours. My pain is all the discs, nerves and other structures that have been jangled around due to these compression fractures.
It's scan week for me. I have to stay at the facility for about five hours for CT and then nuclear bone scan. I am always nervous about going anywhere for that long. But I have a ton of appointments coming up. Labs tomorrow. Scans Thursday. MO next Thursday. I've got my masks and gloves but it's still so scary. How do I know who is not really social distancing or being careful out side of their job in the office I'm going to.
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Moomala— in your pocket for Thursday’s scans. Hope all goes well for you.
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Absolutely pocket duty for Moomala! Pack it in!
Waving to Dodgersgirl Santa hit the mother load. Ya hewww! Score.
Pots~ Good to see you as always
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Moomala, in your pocket on Thursday. All my fingers crossed too! 😊
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Moomala,
Hope all goes smoothly on Thursday with both scans.
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Waving to Rosie. Hope you have a nice day!!!
Hello BevJen~ missed your slip into the living room. Always good to see you. Hope yourday is a sunny one....
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Hi, Mel,
Just came back from a 2 1/2 mile walk through a county-owned spread out garden park that at one time was a nursery. Gorgeous flowering trees and bushes, and my daughter and I even discovered a little water area where there must have been at least a thousand tadpoles. We also saw two geese parents with their little babies -- it looked like they were just going to be introduced to the water. Very cute, and very uplifting.
Not very sunny here today, but still since there's not rain, a nice day for a long walk through a beautiful place. I needed that. So easy to get down between this illness and all of the Covid news.
Have a good day, everyone!
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Moomala,
Thanks so much for the med advice. And I think you are being VERY smart to fear those opioids. I overdosed on OxyContin and was put in a psych ward. Would not wish that episode on anyone. Mel was my lifeline afterwards, and I will be forever grateful to her for that phone call to me. Any of those “Oxy" drugs are just too dangerous. My MO knows about that incident and my wish to find another alternative drug (or maybe acupuncture).
I did go to a Palliative Care group that my old MO suggested, but they didn't help at all. I may ask my current MO about their group.
Anyway thanks again. Take care, and count me in for pocket duty too. I'll be looking to see how everything goes.
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BooBoo~ precious woman
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Hello all.
Pots- Puzzle sounds interesting. Would have to find a place to keep it away from my fur baby cat or the pieces would be EVERYWHERE. LOL. Haven't done a puzzle since I was a kid.
Dodgers- I have some pics from my childhood-- 1970's-- but I am not too techy and neither is my family. So I don't know about digitalizing the pictures. Not a cook for creating a cookbook. And not much of a writer except just jotting down thoughts like I do here.
Moomala- I agree that this virus adds another element to an already difficult situation with our MBC. I am glad you got to somewhat visit with your daughter and son though. In your pocket for your scans on Thursday.
Thanks to all for the ideas on how to stay busy in these times----puzzles, cooking, organizing, journaling/writing. Maybe these ideas will help others that are reading here too. I just need to find my niche. When I stopped working, I was trying to find my niche. Found some volunteer things that interested me. And now have to figure it out again as either those options are closed or maybe not what I can go back to due to the virus. I need to find my niche again.
A lot of us seem to be having scans in May---- Bev, moth, dutchiris, moomala, and me. I keep a sticky note beside my computer. I will watch for posted results. IntoLight posted on another thread of progression on her scans. I pray for all and hate to hear of progression or those having trouble. Wonder when my time will come for progression---2 1/2 years on Ibrance first line therapy.
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I think I'll make a large batch of oatmeal chocolate chip cookies for pocket duty. Moomala I'll be there Thursday!
Candy Bev Dutch and moth pocket duty for upcoming scans.
Booboo I haven’t tried palliative care yet letme know if your new one is any good.
Take care
Tanya
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I guess my last post was not submitted. Just wanted to say in everyone's pocket who needs it.
Not doing too much here today. Did not feel like walking. Thinking I need to start setting an alarm and going back to earlier morning walks, even before breakfast. I do find it difficult to stay motivated, though I will say the day off between longer walking days seems to agree with my feet. Found a way to have my cake and eat it too. I like to eat a high fiber cereal which is great except it gives me a bigtime blood sugar drop without much activity which is not good for me. Not diabetic but recognize this is not good at all. Struggle to think about what I can do. Decided to try grinding it up into a powdery consistency similar to my bran. I like to use the bran in my mexican dishes too for a build up of fiber. Decided to add a sprinkle of cereal as well. Could not taste the cereal within the meal so all in all, still get more nutrients and fiber which is nice and do away with the blood sugar drop as well. It is just the cereal that does that to me. I will drink milk with my carnation instant breakfast. Lots of protein and vitamins and that does not cause low blood sugar for me. I really don't enjoy eggs but have been known to have beans, cheese etc for breakfast. I will see how this goes..
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The more I see the less likely it seems that I will ever be able to go back to work. Being immunocompromised, I don't see my MO changing her thoughts on it. I am feeling like giving up on the idea of working again and exploring my options.
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dutchiris- I stopped working June 2019 and followed my company's Short Term Disability then Long Term Disability policies. I applied for Social Security Disability and was accepted for that 9 days after applying. I am so glad I did it. I hate that my career is done, but I could not do the job anymore due to the immunocompromised status, unable to lift due to the spinal mets, and the fatigue was awful with the 12 hour shifts I worked. Now that the COVID happened, I feel it was a God sent that I am not in the workforce. The Disability payments are less than my income, but I am frugal so I survive.
You can always look into volunteering (when/if this virus is better). You have to do what is right for you and your circumstance.
Hugs.
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Candy My next appointment is May 21 as you know (because you keep track of these things.)😊 This appointment is with the study oncologist. The last one was with the onc NP and the one before was with my MO. My MO wrote for accomodations/restrictions. The NP said no change but we can keep reviewing it. I am unsure what the study onc will say. I may have to call my MO after the study scans and appointment. I have a few options that might work. I don't have to decide anything right now. In my head there is a voice saying "patience little one".
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Tanya~Me want cookie!!!! Cookie Monster would always say! I’ll have a few. Of those yummy cookies!
Dutchiris~I also don’t work there is no way I would be able to do it. No chance I have a few Mets in my spine. Like two one is in my sacrum and it’s a bugger. It makes any one position impossible for too long It was such a relief to. It have to worry about things like that Stressful enough MBC is.
Candy ~ glad your disability went good. Some people have problems why I have no idea whatsoever.
I got a special surprise today DH got me a birthday gift early. A new phone, so I’m trying it out and getting used to it. Takes time to know these things. Need a class to use it. But I love it and it was so thoughtful. Between this and my iPad. Im set for a long. Ass time. 🤗🤗
He’s so special to me. I love everything about him I love the way it feels when I look over and know that is my love. I am blessed and cursed at the same time. For sure.
Mara~Hello dear. One of these days I’m going to have to try your queso (spelling?) make me hungry. Lo
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shouldn't have bragged about having grip on insomnia. Tonight I have one of my fevers that I'm allowed to manage on my own but which is refusing to break, pain in flank - is it my liver? Or muscle? I walked the dog and held her leash on that hand. My sacro iliac joint is still screwed up and hurts. All of me hurts though I took my gabapentin and Advil. I think it's like psychic pain. I tried to do child's pose to stretch my back but it just made me sob. Not from physical pain, just....pain
And somehow I thought tonight was the night to drop my zopiclone to 1/2 dose 🙁
I'm going back to watching Murder she wrote. Fingers crossed sleepies come soon
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Moth~ugh!!!!! Nothing worse than pain and no sleep. I am so sorry. I honestly hope your medicine finally kicked in and helped. I didn’t do too badly last night thank goodness. Some mornings I don’t want to get out of bed only to be exhausted all day long. It just a circle.
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Moth Oh I am so sorry you had a bad night. I want to say that yesterday I had palliative care appointment and I asked the NP why and HOW could I have had such a painful bad day on Monday when I am taking all the meds like Advil and Gabapentin and Xanax. She said some days the pain just breaks through. That's where the extra meds come in. Monday I had a really crappy day and felt as if I had taken NO Gabapentin at all. Yesterday was a GREAT day with hardly any pain or fatigue. Pain in flank is probably muscle. These back problems can cause all sorts of pains. I have several compression fractures in my spine and a fractured pelvis - I have had plenty of flank pain as weakened abdominal muscles try to guard the spine. Mel's right - it's a circle. I hope you were able to get some sleep.
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Went for a couple of walks outside today. One for a couple of groceries and the other because I forced myself. I have the strange lumpy throat feeling where I am not what I would call sad but feel on the cusp of a cry. Nothing is actually bothering me. I hate that. So annoying. Oh well. No more whining.
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I slept all day. I have a headache and feel overall yucky. Cloudy raining. Mara I'm sorry you're feeling melancholy, I get like that a lot. Especially around the holidays I am sending you a hug. I wish we could all really hang out together.. but having you all here. Helps to know we are not alone. Look around at all of us who are in the same boat. It's unreal honestly
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Hey mel, sorry to hear it is raining for you. It is nice and sunny here. I have had a couple walks, going to make supper and go for one more I think.
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Mara~ you inspire me! I wish I could get my. Carcass up moving. Power to you. Make me want queso also ..
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Mel, I too have been sleepy lately. I have been a slug/couch potato. Maybe this three-drug combo is catching up with me. Or maybe I need to eat more; I have not gained back the weight I lost in February. The mind is willing but the flesh is weak, as my grandma would say.
Moth, I hope you feel better soon! Moomala, I will join the gang in your pocket for scan day. BevJen, tadpoles and goslings! How beautiful. Ok, Mara, here is the question that has been nagging at my brain all these months: What do you mean by queso? Because it just means cheese in Spanish but I think I have seen you mention cheese and queso in the same sentence, so it sounds like for you queso may be a particular kind of cheese? Inquiring minds want to know.
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Shetland, it is a melted cheese with salsa mixed in. It is sold with tortilla chips to dip in. I use shredded cheese but also like a couple of spoonfuls of it on top with crushed up tortilla chips. The brand name is Tostitos.
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