My Husband, My Life, My Love, My Family, My Cancer
Comments
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I agree Runor, I love an actual book. I have a kindle, which is okay but not the same. Mainly convenient for travel. I'm reading a really good book by Joanna Cannon called Breaking & Mending about her time as a student/resident physician and the emotional and physical toll it takes. It's really good. She is a British author so I am enjoying hearing that perspective from a healthcare system different from the one here in the states.
I have given up on the yard and decided just to hold position and try to keep what's there alive in this heat. We are back to low 100s this week but no rain. I had considered trying to grow a late batch of early harvest corn or melons in this weather but in the drought I decided not to add to any more water needs. I bought a couple of small house plants instead. I'm feeling better. That I have interest in any of this is progress for me. I am doing my best to work through the pain without the ibuprofen until I get my next set of labs and see if my kidneys are rebounding. Next draw and Faslodex injection is the 12th so we shall see.
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Micmel, Jaycee49 from the death and dying thread has MS noted in her signature info, she’s the only one I’m aware of.
Also, big congrats on 4 years and many more! It’s always been so nice to have this online home with friends. I know we’ve benefited from it and I’m sure the lurkers do too.
Hi lurkers! We know you’re out there
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Lurker here. I appreciate everyone here so much and keep up with you. The Fourth of July festivities sounded like a battle zone. I hung out with friends and we cooked our first seafood boil. It was delicious and actually very easy to make.0 -
Hi, all. I can use some good thoughts coming my way. I am in the path of Elsa, as I know some of the other ladies here, Booboo and Tanya. As of right now, she’s going to get pretty close to me. I’m hoping she skirts a little west so we don’t get the really bad winds and hopefully no tornadoes. I lost power for a week with Irma and lost communication as well. I just don’t want to lose communication with my daughter. I don’t panic for these things any longer because every time they say it’s going to hit us dead on, it shifts and goes a different direction. I can only hope. It would be great if she would fizzle, but I doubt it.
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Mel- I too am glad that this Living Room exists. A safe zone to vent. I have a friend that her 40-something year old son just got diagnosed with MS. I do not know much about his. Just that he is just getting diagnosed. He was falling a lot.
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Jensgotthis, that spread looks yummy for sure, glad you could do it up right.
It is getting pretty hot here though big difference with western canada is that we are used to this hot weather. We do not like it but are used to it.
I do have AC but can say that 45 minutes of brisk walking on the treadmill make me sweat just as much as an outdoor walk. Only difference is I can get more water anytime during the walk. I wanted an hour of the brisk walk but my body said nope. Not sure if I am going anywhere today. Probably stay in with surveys, laundry and waiting for yet another delivery. I may also do some on the spot walking and squats but those are done on my stepbench which is in the path of the big fan that brings the AC air to the living room.
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Jen, nice spread, looks delicious!
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Illimae, you caught me! I am one of the lurkers here. I am not stage 4 (to the best of my knowledge) but have found great comfort here ever since our son was diagnosed as "stage 4 tumor of unknown origin". He appears to be responding well to the current round of treatment but what comes next has not been identified since with the origin unknown, it is something of a guessing game. Thanks for letting me share.
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Wishing my friends safety who are in Elsa’s path, including me. Stay safe.
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I'm also a huge reader/book lover. My family's joke when I was growing up was that when I got in trouble they would take away my books and make me go outside and play with other kids. Harsh, harsh punishment.🙁
I don't have a Kindle. Never have. Never will. And for good reason.
Back in 1997 our high school had a drug problem. So they closed all the lockers and made the kids carry their books around all day. My 82 pound oldest daughter had to carry a 30 pound backpack. It was killing her back and neck. So I decided to do something about it.
In 1998 I was awarded a patent for an electronic book that I called Bookboy. It was more like a real book, with facing screens that you could close up. I formed a corporation and started trying to market it.
The first company I was in talks with was an Indian company who was the largest manufacturer of computer components in the world. The senior VP of development loved it and was ready to drop three million dollars into developing it. Then the owner's son blew that three million R&D budget on a device to turn on your lights by calling your home phone. Really?
The second company I contacted was a smallish, but up and coming, book seller that had a great idea for selling books on that brand new thing called "The Internet". Radical.
I contacted them, the owner signed a nondisclosure and I pitched him the idea of Bookboy. He said:" Oh, that'll never sell. And if I did want to do something like that, my good friend invented the Microsoft mouse. I'd just have him do something for me." The guy's name was Jeff Bezos, and his company was Amazon, an online bookseller.
Six or so years later they came out with the Kindle. Just different enough.
So, no Kindle for me. Ever. Just can't do it.
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Mara, I read constantly so I use Freebooksy... Every day they post free books to download to the Kindle (or phone or other device) that you "buy" free on Amazon. You can choose your favorite genres, even cook books. If I don't like a book, I just delete it. Most of the books are short, easy, and not the most fantastic literature, but usually are fun and fill my day. I don't have a good memory anymore so I can reread them at random. I also read paper books, but I don't have a lot of room to store books anymore so I don't like to buy them and have them around.
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mel: my DH was diagnosed in 1992, he was 44 at the time. He developed optic nerve neuritis in one eye which is how the MS was discovered. Overall, he is doing well, takes no meds for it. Sometimes he feels his balance is a bit off but he only worries about if it comes to climbing ladders and high ledges (both of which he avoids) He is out of shape for long walks but it is not MS related, it is just not going out and walking as much as he should. His right hand sometimes "doesn't behave" but various professionals are beginning to think it is not related to MS but maybe a problem with his ulnar nerve being pinched -- or something like that. More checking it out is in order.
I hope your friend does well, and has a life not severely affected by MS.
I want to thank you for making this a place where we can just hang out.
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Trishyla - What. A. Story. My mouth is hanging open. I am feeling MAD for you just reading it. My lawyer told me once what I thought was a very lawyerly piece of advice. He said the way to get rich was to make something, patent it, wait for someone to copy it, then sue for patent infringement (or whatever the word is). Hearing your story makes me furious at the dickheads out there. The world is filthy with them. So yes, no fakebook for you. Wow.
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I signed up, should be interesting. Thank you for the tip!
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Oh, I am so happy to hear that I can put out broken portable washers out back of my building. The supe came to remove a door that was falling off the wall and I asked about old electronics or old appliances and he said the company who takes the garbage sorts it and takes it to the places it needs to go for recycling purposes. That is great so I will have my older DB help me get it out back for disposal.
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thanks elderberry! I hope she will do well also, it’s effecting her sight, which is how they found it. Thanks for answering.
Jen~ yum looks amazing. My favorite !
Mara~glad you can get rid of what you need to. I don’t like clutter especially if there is no need for it. ( ie broken) some trash companies here are jerks. They make a big deal.
Candy~Thanks for answering also. I hope she will be ok.
KBL~you doing ok?
Trish~ I am mad for you also. That’s not fair. People suck sometimes. Okay most times it seems anymore.
Beaverntx~welcome back to the thread. Always nice to see you. Hope things are good. (Lurker).
Intolight~welcome back. Good to see you here again. I’ve always remembered your name from when I first started over on the ibrance thread. Good to see a familiar OG…. Jen too really.
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Mel, managed to get the washer out myself. Just had to go backwards down the stairs. Leaned against the railing and set the washer on the step above until I hit the bottom. Easy peasy, got room in the closet now to store boxes that need to go out and less clutter all over the floor.
Got my cats a scratching post, hope they will use it and got my cover for the poor chair they were picking to death, hope I can make it look halfway decent.
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Next door are yelling over England winning the game tonight and into the Euro finals for Sunday. I have to go into town on Friday for lunch and a haircut and I can only imagine what its going to be like. Even the lovely guy behind the counter at the corner shop was wearing an England flag as a cape. Its fun but ohgod it can turn really arrogant and annoying real quick.
We booked a flight to Sweden to see friends and family first week of August. Only nine days, but there are heavy border restrictions similar to the US (limited to citizens, family, and very specific so the flights should be limited, family are double jabbed with Pfizer, Other Half just got his second today, and summer in Sweden means everyone is outside all the time anyway, especially in the more rural area we are going. The weather there has been far warmer and there are sandy beaches on pristine lakes nearby so looking forward to getting off Plague Island for a bit!
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Hi, MicMel. Yes, I’m okay. Had thoughts and then deleted them. I had changed my mind about posting. Thank you for asking, and I hope you’re well.
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I can't believe it's already July almost mid July even still. Time just. Plain flys. I ran some errands today and took half of my adderall, it doesn't make me feel so charged if I only take a half. Then I avoid the tummy aches. I took my health I had before for granted. What I wouldn't give back to be 29 again. with my neighbor being diagnosed with MS we are the same age. Just seems like everyone I know has something to deal with it's sad how life is. Up and down up and down. Just one thing after another.
available for pocket duty tomorrow for anyone who needs it. Hugs to my sisters!!!!! Good night. I hope I sleep tonight my back been nagging at me. I always worry about progression with any newache or pain. Ugh! Living life with cancer. Just plain sucks.
Glad you’re ok KBL. Don’t be a lurker. I know there are others out there.
Waving to runor. Saw your post forgot to mention I don’t know how you deal with the heat. Bless you!! And I’m not overally religious but damn!!
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Hi everyone! I've had my daughter, son-in-law, and grandson for the last week. We've had a lot of rain, but a few nice breaks for a pirate ship cruise, nice safe waves, and protected sandy beaches. The deep sea sea fishing trip didn't go as well as hoped, but it was an experience anyway. :-o
MO appt went well - I'm still "PET- negative", so that's good. Next appt in 3 mos, with bloodwork in between. Will go 6 mos to next PET-CT, if everything stays good.
Telephone consult with parathyroid specialist tomorrow, so we'll see where that goes.
Candy - you are absolutely not whiny. It's completely natural to be worried about what's going on in your body and how to fix it. Any news from the tumor board?
SondraF - I have some notes on Tulsa - I'll send then in a PM.
Jensgotthis- your low country boil looks good. I got to enjoy our friends' last crawfish boil of the season on the fourth. Yum! I used to listen to audiobooks during my commute, but haven't done it since then.
Trishyla- what a horrible thing to have happen to you. I'm so sorry.
RosieRed -- Loki is adorable! How did he earn that name?
Goldens- Glad to hear things settled down for your DH.
Booboo and Tanya - I've been thinking of you with Claudette. I hope she wasn't too much trouble for you. She decided not to come visit us, thankfully.
Tanya - we never read aloud together. That sounds really nice. We'd do the Sunday crossword together, which was always fun.
Elderberry- glad to hear from you. I'm with you on the information overload. I'm very selective about what I listen to, and I try to avoid anything remotely political like the plague.
Mel - last, but not least, you have created and maintained such a wonderful safe place for us all. Thank you, and happy fourth anniversary!
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Thank you, MicMel. I do read every day. Things are static here since my trip to Utah for my clinical trial scan.
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SeeQ- Congrats on the "PET negative". No, no word yet from the tumor board.
Just reading along here. Up early today for 8am PT appointment. I only go once a week, with home exercises in between. Cannot see much help so far. Having dead tree cut down in my yard-- been dead 2 summers now. They should complete the job today-- today is day 3 working on it. Went with a friend to his doctor yesterday--- having kidney function issues. For once I was not the patient. But, I was so tired yesterday afternoon. Stupid that sitting in a doctor's office is enough to wear me out anymore. I did not nap yesterday though, and went to bed at 8pm last night.
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We are having thunderstorms here so no outdoor walking today for me. I will probably sit around and do my surveys and such for cash as usual.
I did spend quite a while putting a stretch slipcover over the poor chair that my cats have. It is somewhat big so I just started with getting over the chair, I may just leave it the way it is because it is grabbing the bottom of the chair and with a couple of throw blankets, looks much nicer than the picked mess of the old chair. Got a cat scratching post. Cats fight each other over which one is getting to use it. I also did not like the plastic cover that was supposed to deter them.
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Cross posting -----
Ok update on my situation.
I got a call from my MO just now. Posting while fresh in my mind. I was not put on the Liver Tumor Board agenda. But my MO called her colleagues that work with GI cancers and deal with liver cancers. There are 2 of these specialists in my cancer center---not at my satellite center, but the main campus.
SBRT is not an option for me. Y90 is. Or a liver resection. She did not mention the ablations--cryo, microwave, etc as being options.
We are going to set up a consult with an RO and I guess a surgeon to discuss--- risks/benefits, pros/cons. My MO really wants me to have a resection. I mentioned being on a blood thinner with the PE episode 2 months ago and my hesitancy of coming off thinners and having another clot. Also I mentioned living alone with no support system to take care of me after major surgery.
After I decide what, if any, local therapy I want, then we will discuss systemic treatments---maybe keeping me on I/L or changing it up some. Maybe Verzenio. Maybe an AI alone and off Ibrance---??!!. Maybe a PARP. We will decide later.
My MO said I have time to decide all this. I have to get on the RO schedule for a consult. Decide. Do the procedure, if I decide to do that. So, it sounds like my MO is not really in any hurry about all this. I wish I had her confidence that the small, steady increases the last 4 scans are really ok.
Thoughts??
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Candy, I’m glad you got an update. I think Mel has had a resection. Maybe you could ask her more about it.
I hope you get a lot of details at your consult(s) so you can weigh the two options and feel confident about choosing one, or choosing neither. The consult would be a good time to bring someone with you to take notes or just listen with you. A friend of mine always asks for help by saying, “What would you do if you were me?” Or you could ask the doctors, what would you recommend if I was your sister, etc? It seems to get people to relate to the person instead of just focusing on the facts of a situation. Just a thought.
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Candy~ I've had a liver resection five years ago. It was a really tough surgery. I did have help and it was needed. The pain is worth mentioning. I was in the hospital a week. It took a while to heal but I'm glad I did it. It helped my condition. Tremendously. I'm sending you hugs my friend.
Emac~ hello!!
Rosie ~ hello !!SeeQ ~ hello!!
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Mara: I can remember cutting up my old jeans to make patches for my 1940's couch (yeah, I am that old; it was funky and it was cheap) I was in my 20's then. The couch was totally cool but had padded arms that were beyond a cat's ability to resist. Since then I have moved on to couches with wooden frames and arms but the seats still prove a temptation.
Rosiered: In Norse mythology. Loki was a bit of a trickster. Does that fit your "fur baby"?
We are back to mostly normal summer temperatures. Enjoying it more than ever. The Okanagan lost something like 75% of this year's cherry crop. They literally cooked on the trees. No such thing as climate change? HA! Do we all have to starve for lack of vegetables and fruit before people wake up?
To all: apologies for not listing each of you. Hoping all the best for tests, treatments, surgeries........
Cyber hugs
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Loki is also a Marvel comics character and he is a trickster of sorts. My kitten is mischievous and can also be very cuddly. He is gray and likes to hide sometimes. So when you go looking for him, he looks like a shadow and you're not sure if you are really seeing him or it truly is just a shadow.
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Hello all!
Candy - I wish I had more informed thoughts to offer. I think, like you, I would be concerned being off the blood thinners in such a short time frame since your PE. I would also worry since you do live alone. It sounds like a hard recovery. If it were me I think I would have piece of mind removing the tumor as opposed to Y90 but know that I also know very little about either. Do you have any friends from church that could check in regularly on you or help out? I just hate that cancer just seems to be a never ending series of challenges.
Just going to do a quick hello. I had to have a cortisone injection in my left wrist for severe tendonitis. Left wrist is still very sore and so I am doing the one finger typing technique. Had my brother's two cats here for the last two days as he is having to move and was getting a final inspection from the landlord. It was kind of nice to have the company even though they are more ambivalent than affectionate.
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