My Husband, My Life, My Love, My Family, My Cancer
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Irishlove - Big congratulations on the good PET scan!
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@threetree Oh gosh I hope it is a good pet scan, I had it today and my wording wasn't the best. SO I do not know just yet. Thank you and I'll take it as a good omen.
Laurel
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Oh Irish, I'm sorry. Yes I thought when you said it was "fine" you had gotten good results. Like you, I think this is a good sign, and somehow I just knew it ☺️🤞. I'm predicting all will be well!
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Hey Mel - thanks for the shout out. I'm here. I read our posts everyday, but it's usually late and I'm too tired to respond to everyone. !
I feel your grief for your mom. Losing mine was probably the hardest thing. She always loved cardinals, and one part of the (very long) road that I live on always has cardinals flying across the road one way or the other when we leave. I like to think it's her checking in on me. Silly, maybe, but it brightens my day.
My last PET-CT didn't show anything in my liver, so whatever was cooking there seems to be gone. TMs are still creeping up though...which, of course, lends itself to useless wondering...
Mara - you are so great at being everyone's cheerleader (including your own). I hope you're feeling better tomorrow.
Sunshine - I hope they can push your scans back a little bit AND come up with a more comfortable solution for you (extra padding, pillows, etc.) I think I heard you saying you just didn't need the stress of it either, which is fair. You have enough on your plate right now.
Irishlove- it's good to hear you found a GP that will give you the time you. Great news about the palliative care team, too.
I read this quote at the restaurant for lunch today. I really like it:
"The days I keep my gratitude higher than my expectations, I have really good days."
It turns out it's from song lyrics by Ray Wylie Hubbard (...who also brought us "Redneck Mother" - for anyone who remembers that from about 45 years ago. 😯 LOL)
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Congrats Mae on the good scan.
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Seeq-I can really appreciate your story about the Cardinals. During my parents' last year's, my brother lived with them, as he has something like Asperger's and could not find another job after being laid off in his early 50's. He was a big help to them and maybe the reason they were able to stay in their own home. Anyway, one of his favorite things to do was to feed the backyard birds. After our mother died he told me a new female Towhee had shown up in the yard and that he called her "Mom". He liked to think she was visiting and checking up on him and my dad.
My father also liked birds and in his middle age caught and kept a crow that had a broken wing. He named it Edgar (Edgar Allan Crow - uhg). That bird lived for years in a cage and my dad just doted on it. Then later when my father was in the hospital dying, I sat with him most of the time. Oftentimes I would see a lone crow sitting up in a tree outside the hospital window and I couldn't help but think sometimes that it was Edgar the crow; come back to watch over my dad in his last days and hours.
Now I often see a lone crow sitting on the roof of the building across from me, or in a tree in the courtyard outside my apartment window, and I can't help but wonder if it isn't my dad (or Edgar) visiting and watching over me now. Strange how these events seem eerie yet comforting at the same time.
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seeq, thank you. I'm a big Hallmark Christmas movie fan. In one of them, there is a cardinal that is supposed to be "someone" watching out for you.
threetree, love the "Edgar" story. Crows are really smart birds. They remember who has treated them well and who hasn't (or so I've heard.)
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Love the bird stories.
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I am loving the bird stories too. I’ve always thought red cardinals meant something. They are beautiful.
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Hitting the PET tomorrow to FINALLY get that read on my hip. Today I had acupuncture and then we stopped on the way home to get dinner out for once (our usual pizza pub), but walking is getting to be a real issue and Im pretty positive its an Uber in tomorrow at the very least. Sleeping is pretty impossible and there is some nerve in there that is reeaaalllyy irritated. We moved a hard chair into the bedroom so at least I can sit somewhere else overnight, helps alleviate issues. I tried to get a lorazepam out of the acupuncture doctor and no dice. Its almost a game at this point lol.
Ok just going to post this because i keep dozing off in the chair, will update tomorrow!
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@Mel, thank you so much for the shoutout. I always read but have fallen off when responding. I am on Orserdu at this time and want to let anyone who might test positive for the ESR1 mutation to give it a try. I have had the mets for over 10 years and spread to my stomach for almost 5.5 years, and this drug is working for me. I am able to eat, have gained weight, and my tumor markers are down to the lowest they’ve been since 2016.
I'm sorry for those who are struggling and happy for those who are doing well. I am here and watching, just not great at responding.
Mel, I’m so sorry you’ve lost your mom. I know what it feels like. This year will be 15 years. I lost her in my late 40s. I think of her almost every day.
I’m thinking of you all.
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Mae, congrats on the scan.
Woke up this morning still having the strange liquid poop so did not feel hungry to eat. No meals today. I did cancel Paratransit and Herceptiin for this reason. I am presently cleaning and disinfecting cloths and will disinfect washer after, slept off and on most of the day. Only thing that was lucky is I have been keeping a vaseline barrier to avoid bad skin pain. Right now, it has been a couple of hours since anything happened but for a few days will continue the loperamide. I had only one annoyance today which was with the nurse when cancelling Herceptin who got really uppity that I needed to go to a walk in clinic. I said so you expect me to take the bus while having uncontrollable BM when I cancelled this, no thank you. Decided to go heavy on the immodium, and we will see about food tomorrow. SIL has a horrible cold this week so she has had a crappy week too. I really need to stop crying about being sick as I am not crying over cancer stuff. Also slept most of the day as well which helped, if I go through the night without issue, I can start eating again. We will see.
I am late but hope everyone's day was good and in pockets as needed.
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Sondraf - Good luck with the PET scan tomorrow.
Mara- Feel better soon - bummer!
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I live pretty much in a bird sanctuary. I have an app on my phone that hears and recognizes all the different bird calls. Last week in 3 minutes it recognized 12 different birds.
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Here’s a funny bird story. A while back, a neighbor was visiting us on our front porch. She commented on all the different birds that were making their noises. It was ONE bird-a mockingbird going through his/her routine. We never corrected our neighbor, but it was funny that she thought she was hearing multiple birds.
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Threetree- I think the story about your brother and mom is very touching, and I love the connection you have with the crows.
Gailmary - what is the name of the app? I'd love to identify some of the bird calls around here. (I did get the mockingbird, lol) When I lived in Florida, there was a nightingale that would come and sing in our tree late every night for awhile. I'd just stop and listen. They really do have a beautiful song.
Funny story- we were talking to the kids about the wildlife here, including birds. My DSD, as a bit of a gag gift, brought us a Smithsonian Guide to Birds of North America (it's huge) that their library was getting rid of. It turns out we love it, and pull it out every so often. I see birds here that I haven't seen before.
SondraF, good luck with your PET scan. Hopefully they'll get to the bottom of your hip problem and finally treat it.
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sondra-f In your pocket for PET hoping you get much needed relief soon and an answer. Hugs.
Mara Ugh so sorry you are struggling, I hope today is much better. It's perfectly normal and fine to whine or cry over about being sick! We don't even realize sometimes how much we deal with on a daily basis because it's our " normal" You will have your pity party and then you will move on when feeling better. Hugs
Ha these bird stories crack me up! I do see some beautiful birds behind my house in the woods, I was just saying yesterday I should get a bird feeder…hmmm maybe.
kbl Glad to hear things are looking up for you and Orserdu is doing a good job. Love to hear positive news.
@shanagirl You just popped in my head lol, hope things are well and your getting some painting in.
Hi to all in the room hope your day is filled with some sunshine.
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Seeq
Here you go
https://merlin.allaboutbirds.org/
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Cookie, I did a lot of whining. Then went to sleep, my skin was protected and not sore. Was glad I cancelled appointments. I did not eat for a whole day to give my system a break from everything. I loaded up on loperamide and it finally stuck. Got my prescription and bought some more immodium. Also bought a complete digestive enzyme as well. Did not take an immodium before breakfast and nothing happened. Did not go nuts, just a english muffin buttered with shredded cheese on top. Easing up on fat and return to normal eating tomorrow. The english muffin was It was good. App't for Herceptin bumped up 2 weeks which is fine. I realized that I had stopped getting the complete enzyme in favour of a more limited digestive enzyme but I don't think being cheap does me any favours. At the end of the day,need to stop crying and just deal with stuff as needed, really did not do a bad job all things concerned.
Not sure what if anything I am doing today, earning money is back and probably do something else. Finally ran the laundry through several cycles with a disinfect by wiping down with lysol then water between cycles and washing again. Going to dry now, hopefully they are stain free at this point.
I am also excited as one of my friends who I met when we worked together at a call centre for years and we have been out quite a bit are going to have supper at my burger joint and then hop over to the movies to see the new Ghostbusters Frozen Empire which I am really looking forward too. Last night I watched The Marvels which I really enjoyed and somehow saw a live action Inspector Gadget and watched it. I enjoyed it though it was ridiculous.
I hope everyone has a good afternoon and rest of day, in pockets for those who need it. Below is the trailer for the movie in case some are Ghostbusters Fans and have not seen the trailer.
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mara, glad you are feeling better and are back to being busy again!
sondra-f, praying for good results from your PET scan, and no pain/no anxiety.
We got six inches of snow overnight and are expecting to get more later today and tonight. Hopefully we will then be done for this winter although a snowstorm in April is not unusual for Colorado. I had labs done at the oncologist yesterday and she ran an extra panel to check on the source of my extra fatigue and slight cough. Everything came back negative, so probably just SEs. I broke down crying at the doctor office yesterday which is unusual for me. That is what I get for having such a caring PA!
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Mara, that sounds like a really lovely afternoon out with an old friend; Id be excited by an afternoon like that, have a great time!
Well, I made it through the Pet but not without a lot of pain unfortunately. The nurses took it all in stride and took great care of me, they got enough pillows/blankets/bolsters and other random stuff jammed in and moved my legs around so that I must have looked like a turkey going into the oven at Thanksgiving. Can only imagine what that scan looks like lol. I was able to get a move on after with the fast acting fentanyl and then Uber home.
This weekend will be crutches to keep weight off the hip, compression pants, ice/heat and rest I think. Also there is one spot where I lost a bunch of fat or something that seems to be most troublesome/irritated when laying down, so I think I may sew a few butt pads for around the house wear, see if that helps, especially with sleeping. Too bad I threw out all my old hosiery and some left over bra cups the other week, would have been an easy fix!
Should know Monday, thanks for all the pocket dwellers and thoughts ladies!
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KBL~ good to see you! SeeQ! Welcome back. Missed you both
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Waving hi to those enjoying feet of snow (lol) and severe storms. Prayers for all in the path of those tornadoes. It's very quiet here, hit 82 today. It motivated me to drug Bootie (with catnip) and start grooming her. No one other than myself, can touch her. She's a Persian and matts easily. I sat on a towel and worked for an hour while she tripped out on her catnip. One major chore down. Then I cleaned pool deck and vaccuumed. I feel like I really accomplished a lot. I did not think negatively even once today about this mess. Yesterday was my 1 year anniversary. Today was a new day for me.
In pockets for all my sweet friends. May your day be bright and your night restful with no pain.
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Gailmary - thanks for the app info! I installed it and downloaded the info for my region. Now to wait for the next time I can use it.
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Good morning, all. Nothing much to add, but still wanted to pop in and say hello.
Have a great weekend and stay safe!
Carol
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Sondra, I am sorry for the pain you are dealing with but also sounds like you have many things to cope as well. In pockets for PET results.
I am not out of the woods for other issue BUT am OK. Got the complete digestive enzymes coming. Cutting some fat whilst increasing fiber as well. Breakfast will be buttered english muffins, add bit of garlic powder, wheat bran at bottom, beefless ground gently seasoned and cheese on top. Slowly reintroduce beans and lentils too. Might permanently make changes to fat as well, little bit versus lots. We will see what happens. I can function if this is just a new issue that will continue. Look up exercises for more control and be proactive that way. Can take a while to repair the gut as I am recalling after the non stop steroids fest. I will say, got all meds now, cats have food so we are all happy.
Edit on english muffins, buttered them, less butter than usual, added wheatbran and then parm cheese with shred cheese on top. Supper will be eggs mixed with chopped beans, bit of wheat bran and a few croutons in the chopper too. Use my mini griddles to make two eggs.
Saw this thing that could be offered in Canada that for 10.00 per month could get free next day delivery on grocery orders of 35.00 or more. Going to mull that over and if it would be practical for me as I don't always order deliveries. Waiting to see if coming to London, in the meantime, will eat through my groceries and just enjoy myself. Listening to 80's and 90's metal/rock with a cat sitting with me enjoying the music too. Lifts my mood.
I hope everyone has a good day and in pockets for those who need me.
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Still reading along with cheers for every positive steps and jeers for all the struggles.
A quiet morning here as husband worked last night so he is sleeping and Belle is laying at the patio door in the sun. I have been dealing with a miserable cold for more than a week but hoping I am on the mend. Added to the already fatigued body I have been unable to do the things I had planned to do. Our special son was in the hospital for about two and half weeks after surgery for his broken leg. He is now in another group home where they are all on one floor and have more specialized skills and equipment that he needs for now. He seems very content there. The staff says he is just chilling so this is good. I am hoping to take Belle with me for a visit on Monday .
Mara- I do hope your digestive system has settled down. It is a terrible feeling to not know when the runs might happen again.
Mel- what a wonderful way to share a Celebration of Life for your mother. She is smiling down on you!
Sondra- do hope you will find some relief from the hip pain.
Waving hello to Emac, Mae, Irishlove, Shanagirl, Seeq, Sunshine99, SFcakes, cookie54, intolight, and everyone I have missed. Have a peaceful weekend.
Debbie
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Well, I am feeling much better today, awaiting a Walmart delivery that I ordered yesterday. Set my alarm to make sure I was up when it arrives. Mishmash of stuff, lots of white popcorn, going to incorporate some in meals somehow and obviously snack on the rest. Cheese rounds it out. My SIL suggested electrolytes when I am not feeling well, got some powerade to try, some Kraft Dinner that I will make up but also dress up with added cheese, lentils or beans and beefless ground or ground hotdog. Can make a couple meals out of each one. I also saw a recipe for a homemade big mac baked up in a casserole dish but would need to get a baking pan or try to figure out something to use here. Also got some tortilla chips to make a nacho meal as well.
I am also looking at my storage or lack thereof, I want to get a shelf with hooks, similar to one I have on my closet to store recycling, mostly cardboard so that I can open the closet and utilize extra hooks on the side and store whatever, goal being to clear the area near the door. Also want to start pulling out the oxyclean powder I bought from the dollar store and start using that up, would be nice to put shoes there and free up shelves.
Not sure what breakfast entails yet but may include some eggs mixed with chopped beans/bran/crouton mix, not too much as the mini griddles cannot hold much, not looking big breakfast but more nutritious. My first desire is to eat the popcorn which I did, not too much to keep my stomach open to the meal I mentioned above. My stomach does actually do better on the complete digestive enzyme.
Enough yapping, I hope you all have a good day and in pockets for those who need it.
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Debbie, glad your son is content where he is, hoping DH has a good sleep. I am sorry you are dealing with a miserable cold, that's the last thing anyone needs, SIL sounded awful when I called, finally sounding human now. All this illness makes me think I will mask up when out in public, even paratransit and especially the cancer clinic. I've got the digestive system tamed now and will only use loperamide before going out, don't care if paranoid, makes me comfortable. I'm going back to normal eating and believe the complete digestive enzyme is better than the other one. Not a peep and have eaten plenty of fiber. As far as what I think, I believe my body does not like an over abundance of caesar dressing, smaller amounts will be in order, mayo still is OK as well. Nothing bad happened for the last couple days. Thank you for asking.
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