My Husband, My Life, My Love, My Family, My Cancer
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Happy birthday to you, Goldens ❤️
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Happy Birthday, Goldens
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Happy birthday Goldens.
Thanks Mara for pocket duty today. I get my faslodex injections.
Yesterday I stayed in pajamas fatigue and pain from mouth lesions and other issues. It doesn’t take much to start the pity party over here. I willed myself to get up and bake cookies with my grandkids. They love to crack the eggs and none ended on the floor. Afterward cvs finally had magic mouthwash after more than a week of back and forth about missing ingredients.
Grateful as soon as I had mouthwash.
Afterward going to check on my friends cat as she’s out of town. I may pick up something for dinner. I’ll see how I feel.
Take care all
Tanya
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Happy Birthday Goldens.
So, I thought I would call the triage nurse since I almost passed out and was dizzy for about five minutes which has been getting worse lately. I was hoping she had some helpful words. But she said basically (my wording) because of all the crap I am taking this is going to happen and I am probably going to get worse. I am supposed to monitor myself, make sure I eat and drink water, and let my PCP know when I see him in two weeks—two days before I see my MO. So no help at all. She was telling me all the stuff I know since I have been going through this for the past eight years, but I was a little hopeful. My bad. I am not sure what I was hoping for, but should have known better. My blood sugar is good. My BP goes from high to normal within just a few minutes, and my bloodwork is "stable" in her words. So like the rest of you I just need to accept all this and let it ride. I am a "fixer" so this goes against my normal grain, but perhaps I am just having a bad week and just need to find a hole to crawl into. I just hate to keep scaring my family…
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@tanya_djamila i had a pj day today too after long hospital day yesterday and walk to the tube station. I felt sort of guilty...then fell back asleep each time :) You really do need to push yourself to do things, though, but once you get going you keep going.
Happy birthday @goldensrbest! I hope you had a fab meal with family and everyone let you know how loved and appreciated you are:)
@sf-cakes I went with the Optibac brand as it had specific strain i needed to boost post c diff. However, after seeing what you ladies are taking, I think ill check out those Culturelle products with a broader spectrum. I think a happy gut can take uou far and that whole link is only started to be considered vv cancer. What's one more pill, at least one im choosing to take, in the evenings anyway?
Today was ok, as noted it was a post infusion recovery day. Scan results were confusing as they showed worsening but there was a month between last scan in April and when I started Taxol that we suspect a lot of this stuff happened during that period. We'll scan again when I get back from the US but I have another cycle of three Taxol here to see if it continues to improve stuff or not. But my pain is under good control and ten ton leg is softening and lessening so we are getting somewhere more positive at least.
Got loads to do and I don't want to do any of it, so I guess I'll start with something small while the football match is on in thr background. Have a nice day everyone!
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A very Happy Birthday to you, Goldens!
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Happy Birthday Goldens. Hope it was a good one. Hugs to you
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Happy Birthday Goldens! Hope you enjoyed your day🌺🎂
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Sunshine, saltines really do help if you don't know how stuff will go down. Rice is always a good option as well and quick options for food are also very good to have. My problem with diet nowadays is not knowing if something is going to cause problems on the opposite end. Never so serious that I cannot shut down the pipes and when going out, I do make sure that take loperamide before so that nothing happens. Small concessions and not bothersome.
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Happy birthday Goldens!
Tanya, I hope you're feeling better.
I'm sorry the triage nurse couldn't give you any new advice. Sometimes the status quo just isn't that great. Hugs.
Sondra, some days it's just okay to take a down day and stay in bed.
Two scans today, and I had to be up earlier than usual, so I'm pretty wiped out. I have the MRI results already and there are some new terms in it. I'm hoping the PET-CT results are clearer. I see my MO next Tuesday to go over them. Actually, this should 1be my first appt with his new PA, so we'll see how that goes.
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Hope you had a wonderful birthday Goldens. I'm only 6 months behind you. My wish for you is many painfree days in the future. Oh yes, and remission that lasts and lasts. I wonder if they make a birthday card like that?
Mara, I marvel at your cooking sensibilities. Sounds so good, too. My diet consists of lots of cereal and chicken, turkey, mashed potatoes and rice. I miss eating what I want, when I want it. Since DH does the cooking now, it's a lot of frozen dinners, but I am appreciative that he takes care of me. I sat on the stuffed recliner and enjoyed the Phillies game tonight. Just enough rain came to sprinkle the grass and flowers. But it made going outside terrible humid, sticky and as my Grammy use to say, close. I totally understand labored breathing, but I believe it's extra difficult in 100 degree weather.
I hope all were safe from the storm. Hoping we all can dodge any more hurricanes this summer.
In pockets for scans and life in general.
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Thank you all for the birthday wishes. Had a nice quiet day. Hubs went fishing and my 2 DDs took me to a new wine bar that overlooks Lake Michigan. We then went and had a fab dinner with the visiting DD and SIL. Perfect day.
Here for pocket duty for those in need, which is everyone in Mel’s living room.8 -
Irish, I understand your digestive issues better now. I know that seasoning could be an issue but you should be able to cook rice in a broth be it chicken or beef vs seasoning which may be an issue just to give some variety. Cereal is always good to me as well. In your pocket for more foods being able to be eaten.
I am awaiting delivery of my even smaller portable washer, will live in the tub next to the bigger one. I am also awaiting Crispy Minis farmhouse cheddar flavour, I will see how it tastes.
Yesterday, I made a bowl of fibre 1 cereal even better, put a bit of the reese cookie mix, comes powdered with some mini reese pieces and peanut butter protein powder, was super filling but not bad. I have also mixed the reese cookie mix in peanut butter as a snack. Today I still have 2 more frozen meals to eat due to not having enough room in the freezer, need to open lentils or beans to put on top of the frozen and will put something garlicky in the seasonings I think. May also grind up a couple hot dogs in a meal or grill them on my wee grill, cannot decide what I want to do yet, so much fun deciding. I do have to slow my roll on the food purchasing, running out of room and the hooks and bags cannot accomodate much more of the stable pantry items.
Other than all that, laundry is still happening, since the original portable washer works if I agitate it for shorter cycles, will keep using it, should help having two that I can use so the cloths don't run out.
Hoping everyone has a good day and in pockets for everyone else to feel better as well.
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Irish - I'd forgotten all about the term "close" for humidity. I also remember older relatives using it.
A really tired and wiped out week for me, so haven't posted nearly as many responses to people as I would have liked, but I have been following along. Shots later this morning, so I imagine my week will continue to drag. We've had excess heat here the last several days, and I think that's part of what's causing my lethargy. Our heat here in the PNW doesn't compare to what many of you have experienced over the last week, but it is a lot for here, and if you're not used to it…
Well, have a good day all. You are the best! Mel, thank you so much for allowing us all to use your living room 😊.
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Got some tax money so put through another Walmart grocery order, bought several of the beefless grounds, they are adaptable to several recipes some mexican rice and frozen pizza among other things. More pantry options, will look for places to put them. I have not eaten yet, will be waiting for the order to come and baking the pizza for my first meal. I can make so much with all of this food, it will be enjoyable to create more recipes with what I have and what is coming. Just need to keep up on the eating knowing that each piece of pizza can live in the fridge for up to 4 days from now. The pizza was awesome as well.
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Seconding three tree on the heat wave. I’m among the many in Seattle without air conditioning and the fan barely cuts it. I instantly remembered what “close” feels like. I’m working hard to stay hydrated.
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Good morning, all.
What crazy weather almost everywhere. We're fine here in San Diego, especially near the coast where we live.
I'm adjusting to the new medication (Afinitor) and am using the dexamethasone to prevent mouth sores. Got the results from the 3rd Guardant360 test yesterday. I don't see much different from the last one. I did note that the Tumor Mutational Burden went from around 63 in 2023 to about 130. I think that means there are more targets to hit, but I'm not sure. My next MO appointment is in two weeks. Biopsy of the omentum is on 8/14.
I did reach out to an oncologist friend and sent him a copy of my latest PET scan and the Guardant360 test. It will be interesting to see what he has to say. If you happened to read my most recent blog post, he's the MO we were having dinner with when he talked about the future of AI (as opposed to AIs.)
Am looking over our trust and see that I need to update it. I need to change some of the people listed as contacts, etc., and specify one person in particular that I do NOT want to have any decision-making authority for me. I did get a medic alert bracelet that says, "DNR, NO CPR" along with DH's phone number.
I'll hanging out in the corner with my Kindle and my iPhone if anyone needs me. 😍
Love to all,
Carol
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Another Seattleite here. No AC and it seems like 1000 degrees out there. Going lake swimming today
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Sunshine, I've read that a higher tumor mutational burden could open up immunotherapy as an option? That's probably not the only factor but it's in my notes to discuss with MO when/if that's an option. I really hope the affinitor works well for you, and that those mouth sores stay away!
I grew up in the PNW, the temps there recently sound crazypants to me! We had a week of lovely mid-70s sun here but now back to heavy fog and mid-60s highs.
Thank you for the probiotic recommendations! I started on one yesterday, hoping it will help. My latest labs show I'm anemic, likely from all the diarrhea in the past month and not absorbing enough nutrients.
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SF Cakes, we had that weeklong triple digit gross heat wave not long ago. A more normal summer would be humid, it almost always is humid unless winds are NW or N which gives us a break, normal temps high 80s lower 90s including the humidity. Our building did give residents the split AC which makes it cold but I keep mine at 75 or 24 C which is comfortable and set to shut off when reaching that temp, bedroom set at 22 C and a fan blows that air to the living room. It is grossly humid in Southwestern Ontario, London is bad but Windsor is usually worse, both temp and humidity higher. I could take temps in the 60's.
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I know both US and Canada are having elections so I am here to offer a candidate that I think would do nicely.
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I can’t imagine not having AC during heat waves. I’m afraid there will be lots of them in our future. We have been blessed with great weather this spring and early summer. Lots of rain so our water bill is low. Only a handful of days with crazy temps but nothing over 90. I realize we still have the rest of July and August but so far so good. Our SIL who is so smart (he reads 3-4 books a week and has a photographic memory), shared with us that Mr. Carrier, who invented the air conditioner, was originally asked to help get rid of all the steam in a manufacturing facility. It was discovered that what he came up with also dropped the temperature. Hence we have AC. So grateful to this man!
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We don't use our AC here in CO although we have it. The high today was 84—currently 79—and it will drop to 55 tonight so plenty cool to open windows. It reached 80 in the house but that is tolerable. We get a breeze most of the time. I love the summers here but not so much the winters. It is a trade-off. I Still don't feel well but I popped some meatballs in the slow cooker and will just do rice so it won't heat the house. Top with a salad and we are good. I feed a family of four and dinner is my contribution to the family. Still, I am looking for easy slow cooker recipes so I don't have to stand for long. I am trying to prep ahead and freeze so my DH can handle more of the cooking since I am slowly losing it. I have to capitalize on days I feel decent.
Hoping all you in the heat can stay cool. Heat is the enemy when you don't feel well.
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I don't have a/c. I enjoy the challenge of keeping my home comfortable via cross ventilation. I also find that my body adapts to the heat in the summer and to the cold in the winter. Now I am quite comfortable when it is 80-82 in the house. I have several trees that also block the sun and help to keep things cool. I've never gotten used to a/c. I hate it in hotels and try to open windows whenever possible. A/c feels very stale to me compared to fresh air. I also hate whiten noise so I rarely use fans. Hope we are all keeping comfortable in our own ways.
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Chicagoan, that is great that it works for you. In my case, I need and want both the breeze created from my fan but also the less humid air, 75 is good for AC but at night, I do turn the temp up a bit in the living room. Once the nighttime temps cooldown, I will use the AC in the bedroom as a window fan. I cannot sleep with cats so door is shut and living room gets pretty hot so will keep the constant temp. At night keeping room at 70 so I can sleep. I am waiting for some less humid and cooler weather as well to bring in fresh air. I don't mind the cold either, enjoy wearing fleecy leggings and warm hoodies.
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Chicagoan, that is great that it works for you. In my case, I need and want both the breeze created from my fan but also the less humid air, 75 is good for AC but at night, I do turn the temp up a bit in the living room. Once the nighttime temps cooldown, I will use the AC in the bedroom as a window fan. I cannot sleep with cats so door is shut and living room gets pretty hot so will keep the constant temp. At night keeping room at 70 so I can sleep. I am waiting for some less humid and cooler weather as well to bring in fresh air. I don't mind the cold either, enjoy wearing fleecy leggings and warm hoodies.
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Carol, good thinking to review your trust. I should too. And I need to look into getting a DNR for a fella friend I help.
Scans monday. Bone scan shows nothing new. Yay. Still waiting on ct report.
The weather is starting to get Scarry. Heat hadn't been too bad here. But the humidity is too too much for me. I just realized it's one of my meds SE. We've been getting rain all spring. Downpours. Flooding isn't too bad, usually.
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I don't think we could get by without AC. I know people did, obviously, but no thank you. I had the whole family for the long weekend and it was 104° on the 4th and overnight brought it down 40°. Our high the next day was a blissful 75° with rain. It was the perfect excuse for card and board games and short naps. The rain stopped just in time to cook dinner outside. We're back in the high 90s, per usual for this time of year.
I remember hearing a question from several years ago about which invention, in the last 100 years, had the greatest impact. It was air conditioning, because it changed our lifestyle (and increased productivity).
Intolight - somehow I missed adding your name in my last post about the triage nurse. I figured you knew who I was talking to anyway. My parents lived in Denver for awhile. I remember they had some kind of whole house fan that they could run for 10-15 minutes with the windows open to exchange all the air in the house and cool everything down in the evening.
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Im a big fan of ceiling fans and cross breezes, but at some point you need A/C just to dry out the house. You can get by with a good ceiling fan for a long long time in the summer lol. Wish you guys would send some heat this way, I had the space heater on the last few afternoons and tomorrow its going to struggle to get above 63F, along with rain all day. I feel like we've had the same grey 50s-low 60 degree days for the last 15 months!
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goldens Love the fun facts! Wow good for your sil, my brain stinks anymore with concentrating on reading. Short spurts and word puzzles to keep my brain somewhat sharp lol.
I definitely can't live without AC! As much as I would rather be in fresh air the humidity is just overwhelming at times. Plus my body doesn't regulate the heat the way it used to.
gailmary Happy to hear bone scan looked good, fingers crossed for CT!!
Mara Love the election post, make me chuckle…so true!. I
Carol Looking forward to your next blog always love your titles too. You have a gift to express your thoughts. Hope you are feeling ok.
sfcakes Hope the probiotic is helping.
Tanya Hope this is a better week for you and your mouth is healing well.
Well I'm back to limbo but better than a definite bone met. CT shows mixed lesion on T-3, PET and MR it's not demonstrated. So we play the wait and see game until next CT in Sept. Will try to just enjoy the summer and put progression thoughts aside.
Hi to all here and in everyone's pocket for all needs this week and always. Hugs.
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