My Husband, My Life, My Love, My Family, My Cancer
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Well, today will be a noisy day. They must be gutting the two vacant apartments downstairs. Don't have anywhere I need to go, will split up between quick laundry, walking outside after a couple of meals and survey stuff. Made quite a bit yesterday and have a good amount saved up. I am saving as much as possible for the future and decided that if need be, would add some sort of job for a few hours on the weekends to get some extra money. Not sure what that would look like but would good give me enough to move and would not take much more money.
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I think I've lost the last day or so . Where it went I don't know.
Mara- love the video lol
Mae- enjoy your time at the cabin. It is probably so peaceful
I have read the posts on DNR etc. Very deep yet so important. We have our wills POA and health wishes done. I am DNR but there are so many variables. Do this if this happens don't do that if this happens. It boggles your mind. I was awake last night thinking about everything. One thing I have told my family and will be in the process of is MAID, This is Medical Assistance in Dying. This is a very conscious personal decision I have made. This does not mean I am not a spiritual person it just means at a certain point I want the end of my journey to be in my hands. Is this suicide? I know it is not because ending of life comes in the description of what life is at that point. Life to me is a multitude of different things. Hopefully this will not come in the foreseeable future but being realistic in my own destiny is there as I look in the mirror each day. Until then I will try to enjoy and lead a fulfilling life to my new abilities.
Thinking of you all.
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As I was writing my above post I had just colored my hair and was waiting for it to set. I had to go rinse it out.lol
This is my plan and hope I do not offend anyone with a choice that is personal. I have reached out to God or a higher power. As I sit here with my beloved dog at my feet there is no way I would ever let her go through a life of pain etc. I will know when it is time to let her go as difficult as it will be. As a human I want that same love and respect given to me at the end.
Ok done with that subject. I want more videos of Mara doing her laundry !
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should have read do not want to offend anyone
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Hmmm, I don't know which one to choose!
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When I came home from one of my short walks, I literally had a neighbourhood cat sneak into the building. The new building owner was here, knew me by name, creepy. He did not say anything. We teamed up to help the cat get out but the cat showed up to my door so I grabbed it and as quickly as possible, deposited the cat outside. Picture the below in reverse.
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Haha (about the cat). They can be sneaky.
I'm sorry you were creeped out by the new owner. Yuck!
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Candy - I don't have a POLST. I do have some advanced directives from several years ago and have had multiple discussions with family. You are right, it needs to be documented. I have witnessed doctors defer to family because the patient may have directives but they aren't in the system and family doesn't have them or won't bring them in. I admit I've been dragging my feet taking what I have to be scanned in to the EHR at our hospital system.
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Sunshine, money trouble and worries about moving were troubling me as soon as the jokers came to say they wanted me to leave the apartment. I was like OMG, I don't make enough to live anywhere else. Few sleepless, crying nights. It has largely calmed down, even more calm now that I found out the new owners CANNOT increase my rent Jan 1st as they have to give 60 days notice on a legal form. I also realized if money became that much of an issue, the surveys and a job on the weekends for a few hours would provide enough money for me to pay for another apartment when the time comes.
Very noisy here with the work below my apartment, turned up the Christmas music I get paid to listen to so the workers can feel festive.
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Hi everyone. I've been reading along when I've had a few minutes here and there. I really appreciate the discussions about EOL planning AND how to just get through the hard days.
Mara - I've been thinking of you especially. You really are so strong in handling a very stressful situation with planning and courage.
Our household arrived at the new lake house intact --- at least the big stuff - I haven't checked most of the boxes.
Here's a pic of a lake sunset from our front walkway:
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SeeQ, beautiful view from your lakehouse, enjoy it. As far as being strong, my brother and SIL have had my back all the way. Found out from the legal services some of us residents have contacted that he cannot raise the rent Jan 1st as expected as no notification has been sent, we need 60 days.
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Sorry for bringing up the subject of DNR and then not responding more today. I just could not deal with the discussion today. I have felt like a gut punch since my discussion with the Social Worker. I am 51 years old. Yes, I have had MBC for 4 years now, but I still feel I want life saving measures if needed. I am not ready to give up yet. I have felt depressed today. Sad. I just do not want to deal with Wills, POA, DNR, etc right now. But, my next scans are Monday so reality will be in my face then. I cannot hide from it. But for today I pushed it away.
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Candy~ hugs for you sweet friend.
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Sunshine, lol! I actually sleep great but I’ll definitely take “strange noises” for $10.
I slept 10 1/2 hours last night, which is crazy. I’m pretty routine with 7-8 hrs. It wasn’t great sleep though, too cold on the mountain. Today may have only been in the lower 50’s but we’ve got a heater going and an electric blanket.
Another early night for me though, adjusting to the elevation always wears me out for the first couple days.
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I cantbelieve Christmas is coming so quickly. This time last year I was almost done. This year I have squat done. Hoping some money will fall out of my ass so I can buy some gifts. Being on a fixed income is. A bear. I did a few surveys, sometimes they can be a good thing!! My son is out looking at a place. He sounded excited when we talked before he left. But when we hung up the phone mama bear Kicked in and the tears started to fall. I won't have anymore kids home. With me anymore and I don't think I really like that. I love seeing them. Knowing they are the closest blood I have and how dearly I love them. I see my daughter all the time. But with boys. They don't come around and visit like the girls do. I'll be begging for time with him. I am in NO hurry for him to leave. I don't want to hold him back but love having him here and love seeing his sweet smile. Kids are the most beautiful gift Ive ever been give. But it's also been the hardest. You just want to protect them always. Off to bed. Hope sleep finds me Goodnight ladies. Hugs to each.
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Mel- hugs to you
Moth and Elderberry- I've watched the devastation caused by the mudslides and flooding in B.C. It is heart wrenching. Peoples homes and livelihood are gone.
Candy- you definitely don't have anything to be sorry for and yes we will all deal and fight this disease. A big hug to you.
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Good morning friends - agreed that this is sure a fast moving thread! Good discussion on DNR. My family knows my wishes but unless written down one can maneuver be certain they will be followed. We need to redo our Living Trust as we have moved and there have been some major changes. So many crazy little things that need to be done when one moves🙄🙄. Be well this weekend. Peace to all of you
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Mae, do you get a headache the first day or two from the change in location? I often get a headache my first day or two in the desert. It's much drier than San Diego. I'm jealous that you can sleep through the night - but happy for you, too.
Mel, it has to be really rough seeing your kids leave the nest.
For those in BC, my heartfelt thoughts and prayers are with you. Unbelievable to see what is happening there.
Candy, nothing to add, except (((hugs))).
To all the rest, wishing you all a restful weekend. I'm still in limbo land regarding my PIK3 CA mutation test. Canceled it, then tried to un-cancel it. Still waiting on that. I don't want the mutation and I don't want the side effects of Piqray, but am trying not to jump ahead of what might or might not come.
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ok so this is a stupid question but how do I upload a picture from my gallery to post on this thread. My mind is in the air somewhere 😕 I am so tech illiterate
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LivingIVlife - you can right click copy & paste it, or click the little button above the reply box that looks like a mountain in a rectangle. That will bring up an upload menu and then you can select a file from your folders.
I've had a rocky start to the day - woke up with a leg cramp, second night in a row. Ugh, I hate them.
Then, as I was laying in bed with a heating pad on my calf, my dh let the dog out for a pee and she went after a critter - which isn't the first time but what was the first time is that she jumped over a railing on our balcony, rather than the fences on the ground levels. We're on a steep slope and the side she went over is near the creek ravine. it's essentially a fall from the second story. Luckily there's a lot of boxwood & other shrubbery under there & I'm guessing she landed in that so it cushioned her fall. Olive seems fine, she has a scraped knee which bled a bit but she seems otherwise ok. Dh & I meanwhile are still trying to get our heart rates down...Dh saw her go over & thought she'd be dead or at least break a leg...
It's my immunotherapy infusion day & then I have a couple tasks and errands. Can't believe it's Friday already.
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seeQ. Beautiful lake sunset.
Moth that must’ve been so scary. I hate the leg cramps. I sleep almost every night with a heating pad on some aches spot to begin.
Tany
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moth: Phew. Relieved Olive is okay. I can well imagine your horror and panic. Is the creek in the ravine rising? I get cramps like feel like a sprained ankle and hobble around trying to walk it off. I also get weird thigh or calf cramps - oddly - I will have them while I am dreaming and they go into the dream itself instead of waking me up. So in my dreams I am hobbling around in agony. WAKE UP!!
LivingIVlIfe: I refer to myself as a Technocretin so don't feel bad. .
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Wow Moth I would have had a heart attack !!! Thank goodness Olive is ok.
Went today for Port Flush and Lupron injection. Local. So 10 minute drive from my house. Home now and laundry going. Getting anxious for Monday's CT and MRI. Hope things look ok with changing to Lynparza. I hope for another 3 month reprieve.
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Hi to all in Mel's living room. I had my MRI on Tuesday. The technician got me to point out where on my upper arm it hurts so they could put "beads" there. I clasped my hand around my upper arm "Roughly where it would hurt or itch if you get a vaccination" They put my arm in a cage, strapped my arm and cage to my body and sent me in. There were good enough images that they didn't then have to do a contrast. I was asked when I was getting up if I had had a traumatic injury to that arm. Nope. It just feels like the muscle is tender and a bit itchy. My doctor would get the results in about a week.
Believe it or not, Thursday my MO contacted me and said my upper arm "thing" was an enigma and apologized for dragging this out. He must has seen pretty much everything. So I am now due for a bone scan, likely within the next two weeks. Do I get even more anxious since my MO wants to move on it fast? He says the bone itself does not seem to be affected, so it is in the marrow. Of course I went to Dr Google, so now I am worrying about myeloma, leukemia, a thing called Homozygous Inactivation that occurs in bone marrow for people like me with NF1. That is a pediatric condition so I guess I can tick that one off. My blood work counts are excellent. So WTF?
Mel's living room needs at least one padded wall that we can throw ourselves against while screaming. Will I need to take an ativan sometimes in the following days?. Yup. Probably
Waiting to hear about everyone else's scans.
Can barely bring myself to watch our local news. Towns under water, thousands of farm animals dead or will have to be killed because they have been sanding in water too long and have hoof rot, major roads washed out, missing people, shortages in the Interior because supplies can't get there. First BC burned or boiled under a Heat Dome, now we are being washed away. No such thing as climate change, eh?
edited: He didn't say it was in the marrow - that was me guessing. He just said the bone was okay and that was "a good thing"
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Elderberry- Hoping the bone scan will get done soon so you have some answers. He didn't say marrow. Bone was ok. So maybe soft tissue? Muscle?
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I'm not usually one to share memes, but I thought this one summed up Mel's Living Room perfectly. We take care of each other.
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Candy: my upper arm "lit up" when I had my PET. It was something the radiologist and Mo hadn't seen before so the MRI was suggested. The MRI didn't suggest anything. Maybe I was abducted my aliens and it some form of implant? Ha ha
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Sunshine, I do often get a sinus headache around the 2nd day but it doesn’t last long.
Moth, what a scary thing to happen, so glad she’s ok and you all are ok too.
LivingIVlife, here a quick screenshot of how to post pics.
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elderberry, ugh I hate that you don't have an answer yet. Fingers crossed for results soon & not just that, but totally benign results
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I agree SeeQ!
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