Best Of

Re: My Husband, My Life, My Love, My Family, My Cancer

Hello room

I’ve been reading along and just rolling with the punches.

Sondraf that doctor appointment sounded like a nightmare. Thankfully your oncologist backed the newbies off of you. You are one strong woman. They probably need to hand out valiums to all the stage 4 cancer patients that have to go to the ER at the door!!!

Mara I put bag of frozen spinach in the spice cabinet. My daughter found it. I don’t even remember when I put in there??? Oh well new microwave on The horizon. Pocket duty waiting for your results.

I had my COVID and flu shot a few weeks ago. Then I got an infection from the mouth sore.s (ibrance SE) Ended up in ER for a terrible few hours. Stupid nurses playing pranks on each other in an ER. I pretty much lost my mind into an anxiety spiral. My husband was with me so we made it out of there without getting into a brawl. Jokes aren’t for an ER. I complained in writing by phone etc. got an apology from whatever supervisor was tasked with speaking to us. Ugh.
I saw a coyote in my neighborhood ad have others tell me they’ve seen groups of them. Easy eating of pets and garbage in the neighborhood.

Hoping everyone’s scans and appointments go well.

Be safe everyone.
sending hugs to all my girls. I read daily but don’t always write.

Tanya

Re: I say YES. YOU say NO....Numero Tre! Enjoy!

someone put up a sign here (the kind lit up with lights) sating

One CEO down

Many more to go

wren44wren44

Re: Contemplative practices - Affirmations, white light visualizations, healing meditations

@rlschaller oh I love that garden idea! I will definitely use it. Thank u for sharing.

snmsnm

Re: My Husband, My Life, My Love, My Family, My Cancer

Sondra - I agree with Chicagoan and Intolight when they say that just reading your post was so tiring! I am so sorry for what you've been through. Just a couple of days ago I thought you sounded so much better and were really on the upswing. Good that you have your trusty oncologist watching your back, so the others don't go ballistic on you. Just glad you're home for now.

chicagoan - Yes, the "wait and watch". It is no fun. I continually feel like I'm just on the cusp of something negative happening, but just not quite there yet, so always on edge and worried. With the coyotes, I've seen many pictures of them locally in news stories, and have read stories about others encountering them, but until last Wednesday, I had just never actually seen one. I know they are all over urban areas now and have been for years, but I just always figured I miss them because they're out at night. Well, I got an education there. Like you've heard though, I do hear that they won't bother an adult just out walking. I think I was just so taken aback by the sight of it. I did read about a woman here in Seattle who was attacked, because a coyote tried to take her small dog while she had it on a leash. She chased after the coyote and got bit or worse. Apparently the little dog was never found. Some say the coyotes are getting a bit bolder in that they will actually try to take a dog that is being walked on a leash by an adult. I think I will resume my walks, but not today - I can get a little superstitious and it's Friday the 13th. I also think I'll stick to the main highway through here too, when I do walk, until some of my "shock" tamps down a bit.

Mara - I agree with you that Sondra just seems to "plow through" things that would "bury" a lot of us. I am one that would get buried and I truly admire her gumption and fortitude. I also just love the idea of your "virtual hug" from your mother that helped you get to sleep. That is truly a beautiful thing! I still miss both my parents a lot, and when I'm having a rough time, I like to imagine that they are sitting there at my dining room table, like they did in our home when I was a kid; just "doing their thing - my mother with her word puzzles and my father with his math problems, yard plans, etc., and it just gives me comfort. Nothing more than an "imagining" but I feel sense of security and moral support when I do that.

Intolight - Yes, I remember that you were having a "stable not stable" issue with liver lesions too. The one MRI I got actually bumped them back a bit in size as compared to the CT, now the latest CT says they're a bit larger again. I agree that the different radiologists can see and focus on different things and then write it up a little differently too. Some make things sound really severe and dramatically bad, while others just write in a more nonchalant manner. My oncologist said that is how they do it, so that again, we just have to watch and wait for other indications that something might be changing. The scans are just one tool in the toolbox. It really is frustrating. I can understand all of your coyotes, since you say it had been a fairly rural area, now growing like crazy with apartments. What surprises me here though, is that I am in an older, pretty dense urban area, but it's really been gaining a lot more wildlife over the last few years. A friend who lives about 3 miles down the road said her neighbor saw a deer not long ago - and that was near the University of Washington, a very strong urban area, but on a nature trail. I grew up in a suburb south of here, and when I was a kid many of us used to sleep outside in our sleeping bags in the summertime. It was completely safe and a lot of fun for groups of us in the neighborhood - we'd all hang out in somebody's yard together and talk into the wee hours and then fall asleep. Our parents weren't worried back then. I could never let kids sleep outside like that today. First came the possums and then the racoons, and now the coyotes in addition to the others. Boy, how times do change.

Re: My Husband, My Life, My Love, My Family, My Cancer

@sondraf Hopping back into your own pocket again, thank you for being in my pocket as well. I told DB last night that although I was worried, I am moving my mind over too don't worry about it. I am sorry about all the different struggles you face on an almost continuous basis but you just seem to be able to plow through what would bury a lot of us. I am hoping that pain and fevers are fewer and farther between and hopping in with pain meds and chocolate. I also bet the cinnamon would gather in the holes. Sounds yummy.

I slept lightly, usually after the walking around with DB and niece and nephew at costco and then Walmart for the microwave, it makes unable to sleep awhile but then I imagined getting a virtual hug from my Mom and dropped off to sleep. I feel OK today and ready to go.

Have to tidy up the packaging from the microwave and start the pile for recycling again. Unfortunate part is that this is only a 700 watt microwave instead of 1100, not going to shop for another one, will just have to adjust my cooking times accordingly or use the stove more. It is also much smaller but that is OK too. Perhaps just reheat and do actual cooking or heating between all the other tools at hand. I can also increase regular cooking times I used by 1.57 times so the regular frozen pasta becomes 5 min, found this info online, if I cannot be bothered stove and boiled water in a pot are options.

I did get more giant meat pies, chocolate treats and another broccoli slaw since the other has lasted forever, plan to add to meals or just make a salad with croutons and some chia seeds sprinkled in, I will have to see later. Got lots of chocolate to nosh on, I can usually make it last over a month so no running out anytime soon.

As far as the MRI worry goes, compartmentalizing is key, keep aware, watch for symptoms and that is it. Never totally leaves mind which would not be good for me to do but not have an active stress about it.

I hope everyone has a good day, in pockets for anyone who needs me, in my own pocket as well for housework getting done and earlier to bed . @micmel and @candy-678 thinking of you both and everyone else who is reading these posts from us all know we all are thinking and care about you.

Re: When you're all done.........but still undone by cancer

@heikkipus, thanks for your kind comments about this thread! To tell you the truth, when I started it I didn't know whether anyone else found the "re-entry" after cancer treatment to be as confusing and disorienting as I did. It's been really helpful to learn that others go through this phase as well. I'm a university professor, so I entirely get your concerns about cognitive functioning and treatment. I returned to work within just weeks of finishing chemotherapy, just to teach 1 class at first, and it was daunting. The first thing I noticed was that I was having word-finding difficulty, which you really don't want to have while lecturing! I also realized that I couldn't follow a discussion in faculty meetings. When multiple people were speaking, I couldn't seem to separate their voices, so everything ran together. I reported that to my onc, who promptly started me on 15 mg of adderall, which has been a Godsend for me. I still have some clear difficulty focusing, but I'm at least effective in what I do. The onc said the symptoms of brain fog generally clear within 2 years, but can be longer-lasting, so I probably fall into that latter category.

However, with time, I've found ways to cope. I'm 68 now, and close to retirement, so I don't feel like I have to hide this consequence of treatment. I'm pretty open about it, and I've found that my colleagues and students are quick to help me out. For example, my students send me written summaries of our meetings, with a "To Do" list for them and for me after each meeting. It helps keep me on track. I've also purposefully moved from doing complex research to a more administrative role leading our doctoral program. That new position uses my current strengths better— my professional judgment, my ability to get people to work together effectively, my ability to be supportive of our students. In this position, I don't have to multitask as much, and I find this role to be truly rewarding as I get to the end of my career. By the way, I worried a TON when I first came back to work about whether I'd be able to be as productive after cancer. In retrospect, I wish I'd trusted more that I would find new and valuable ways to be productive.

I also really do wish I'd known that recovery goes on for quite a while after treatment is finished. My onc really didn't advise me about returning to work at all, so I assumed I should go back to work as soon as I finished chemotherapy. It was truly FAR too early! I only had 1 class to teach, 1/2 of my normal teaching load, but I was utterly exhausted after each class. I would fall asleep as soon as I got home. And my blood work clearly told the story: All of my electrolytes and blood values were completely out of whack for about a year and a half after I finished chemo. Then they gradually became more normal over time. I was, in fact, significantly anemic throughout the first year after chemo.

Later I heard that a good rule of thumb was that it takes twice as long to get over chemo as it takes to go through it. I was in chemo for 4 months, so by that guideline, I should have been off work for another 8 months. In truth, even longer would have been reasonable. But when you're a person with a high need to achieve and a strong sense of personal responsibility, it's very difficult to be the person who says "I'm not ready to return to work yet. Will you approve a period of recovery for the next XXX months?" I believe my onc would have been entirely supportive if I had asked for the time off, and I certainly had plenty of sick days I could have taken. But I just didn't know that was reasonable.

Anyway—- This is a long-winded way of saying I hope you can take better care of yourself than I did! I fumbled through it, but I do realize that I didn't need to put that much pressure on myself. If there's anything I can do to help, or you have questions, I'd be happy to chat further! Best of luck to you—

Re: Ibrance (Palbociclib)

Chicagoan & April so pleased to hear that you are both doing well & hopefully the change of meds will halt any progression April. After my 7.5 years on I/L the last 9 months for me have been on Orserdu only. I have a number of mutations including ESR1 so it’s a good choice for me and so easy. My blood work is perfect. I have scans on 6th January so we will see if it has worked.

I enjoyed my Ibrance days and was very grateful to have had the opportunity to be on it.

Good luck everyone and enjoy the holidays and let’s hope 2025 is kind to us all. xxx

chicochico

Re: Fearful of IV Bisphosphonates and ONJ - Q About Dental Implants

Hi @maiyen, I'm sorry that you have to deal with these dental issues. According to my oral surgeon IV bisphosphonates have a much higher chance of causing ONJ near old or new implants than oral bps. The oral bps clear your systen faster than the injected/infused ones when you need invasive dental work. I have silent GERD and Barrett's esophagus for which oral bps are contraindicated but I use them anyway when necessary. I have to increase my PPI dosage, drink lots of water and wait extra time before eating when I take a pill but I can deal with that once a week. The bone density of my jaws is too low for implants, even with grafting. Now I have dental bridges where teeth have been extracted.

Have you had an oral surgeon evaluate the bone density in your jaws? I cycle in and out of osteoporosis/osteopenia with breaks from the bps monitored by my endocrinologist. My jawbones are in worse shape than my hip or spine. My sister who has osteoporosis tried implants with bone grafting and now is in limbo since they didn't take. Somebody else might have a better experience to report. All this dental work is painful and expensive but I'm with you on keeping your teeth as long as possible.

Re: I say YES. YOU say NO....Numero Tre! Enjoy!

Imagine how our lives might be if everyone had even a bit more of the Wisdom that comes from seeing clearly.  Suppose people everywhere, simultaneously, stopped what they were doing and paid attention for only as long as it took to recognize their shared humanity.  Surely the heartbreak of the world's pain, visible to all, would convert everyone to kindness.  What a gift that would be.

Sylvia Boorstein