My Husband, My Life, My Love, My Family, My Cancer
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Cakes - that is a beautiful garden, some incredible tiers! I love jasmine and lavender and wish I had the latter in my fancy-pants garden. Its pretty easy to plant, maybe I should get some in the shop 2 minutes away and chuck it into a pot or something
Seeq - I informed Other Half that we need to go see Top Gun, in IMAX if possible. He said he thought that had already been agreed. Not sure if we will go this weekend as I want to not go anywhere or deal with the human race at all (and ive got some achilles tendonitis going on), but maybe next week.
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Candy, what your palliative care doc said, about you stressing too much and researching too much, is straight up bullshit. Does that doc have MBC? I suspect not. Researching possible treatments is one way I can REDUCE stress, and talking about options is also a way to reduce stress. Good grief. I'm sorry you left that appointment feeling like you had to stop talking about it.
My husband had a similar experience with the one time he agreed to meet with palliative care, they asked how he was doing and he cried a little, and told them he felt worried and scared, and they told him to think happy thoughts. Seriously. He refused to meet with them again. I understand about the importance of gratitude and "living in our moment" (thanks, Ibrance commercials) but if we can't share how we're really doing and ask all the questions of a PALLIATIVE CARE DOC, then, WTF?!
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SF cakes, beautiful tiered garden for sure, great way to use a slope.
Candy, my post did not submit but when it comes to research and questions, keep pushing your docs. It is your right to know options that may be taken and also why a doc is not for it.
I just finished breakfast. Baked up 1/2 cup black beans at 425 for 7 min 40 seconds. Took them out of the Breville. Took a plate with 1/2 cup of beefless ground which is nutritious but very low cal, chopped some frozen spinach, 1/8th or so shredded cheese and a cashews, pre ground a handful and put those on top as well. When it came out, after 60 seconds in the microwave, cheese melted and it was good. Put the baked beans in the mix, added wheat bran sprinkle. Took 3 tiny spoonfuls of mayo, caesar dressing and onion chip dip and mixed it with extra salt (I am low salt usually) and generous amount of italian seasoning. Of course it was good but not a heavy or high calorie meal.
I did a 10 minute Paul Eugene senior workout though I do not sit, do whilst standing and have arm and leg movement which is great. I hate long sessions of exercise so will do it that way. Do him twice an hour with a break on the arm movements, may also listen to my own music. Started grating up my laundry bars, I always add them into my detergent mix along with regular detergent. I love doing that though I will look into getting the bars pre cut before putting them in a chopper that lost its lid, I can keep it for just grinding stuff that is not food.
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I agree on Top Gun Maverick. It was a great movie. If you haven't seen the first Top Gun or don't remember it, seeing it first may be helpful in setting the stage.
SF Cakes, Your garden is beautiful. The tiers are a perfect solution to the slope. We have family who have a very nice view of the Pacific Ocean from their windows because their street is one big uphill (or downhill) and their house is close to the top of the street.
Candy, I agree that you should keep on being involved in treatment decisions. You're very knowledgeable on what could be ahead for you.
Not much happening for me this weekend. I'm trying to get out and walk more but many days I find reasons not to. I went to my water exercise class today, which felt good, but I have back and hip soreness that shows up again once I'm out of the pool. My energy level is definitely lower now and I notice that I really need a rest or a nap by around 3pm. Anyone here take naps?
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Thanks ladies. I will continue to read and research. That is me. That is how I deal with the stress. To be knowledgeable. It does not stress me more to read. I understand it might for some, but not me. But, I guess I will have to pick my battles a little more. Not show the docs how much I really read. Just know it for myself. I tell them "I am not the doctor, I know that, but this is what I read/heard". Maybe that puts them on the defensive. Act dumb. But really have knowledge inside my head. That is how I will do it from now on.
Rosie- I nap practically every day. My naps are limited to 30-45 minutes, no more than 1 hour or I feel awful. A "cat" nap--- I am a cat person--haha. But, Yeah, I need that nap most days. The fatigue is rough. Not like I used to be working 12 hour shifts and on the go all the time.
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Good afternoon
See Q thanks for the movie review. I haven’t been to a movie since Covid but it’s something my husband would love-action Air Force- so I’ll drop a hint.
SF cakes your garden is stunning!!!
Candy I agree with everyone-does that dr have MBC. Being knowledgeable about our condition predicament is what keeps us hopeful. You know trials treatment things that may keep us alive!!! Yes we MBC ladies have anxiety- a normal response to this DX.
Rosie I take naps sometimes. I have to be careful bc sometimes I have killer insomnia so I don’t want to rest too much in the day.
BevJen I called my dr office this morning and asked me to call with the results. Something came over me and I just didn’t want to worry through the whole weekend. My results from the nurse are stable have a good weekend!!!!!
LivingIVlife great results!!!! Woo hoo!
Sondra F Booboo Mae Mel Kikomoon Moth Runor akBL and everyone I forgot waving hello. Have a great weekend.
Tany
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Tanya- congratulations on stable!
Rosie- if I can I rest in the afternoon. If not I feel so tired and miserable. My fatigue gets the better of me.
Candy- keep up the research 👌
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Rosie, I fall asleep on the couch, usually when watching youtube, I'll be watching a video and bam, open my eyes, find it is another video. I find that if I fall asleep in the evening, I will be up til three then go to bed for a few hours and wake about 5 hours later. I almost fell asleep during the Secrets of Dumbledore movie. Those movies just don't hold a candle to Harry Potter but thought I would try it out.
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Tanya, yay for stable 🎉
Trouble with the local oncology clinic, as usual. About 2 weeks ago (after my first Enhertu infusion without a bad reaction), I notified the local of the treatment change and the next scheduled infusion. I was told that new orders were placed and s scheduler would call. No calls last week, so I sent another message on Tuesday. Again, I was told I’d get a call, nothing. So I called today and was told they’d notify the doctors staff (which I’ve already done, twice), still nothing. Monday morning I’ll text the doctor directly to his cell, maybe, just maybe, they’ll get me in Thursday when I’m due for round 2. What a pain in the ass.
In other news, I ordered a hot tub today. It won’t be delivered until September but it was a great deal and I’m super excited. The nights will be cool and perfect by then. Hot tub, wine, stary skies and the Mountain View, ahhh.
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Hello ladies. I ve been reading along thinking of us all. We are a tough bunch of ladies.
Moth. On my mind.
Love to all as always.
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congrats Tanya !!!!!!!!!!
Nice purchase Mae. Sitting pretty ! In the hot tub.
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I wrote a whole long post and now it is gone.
Stupid website, I should write it in notepad and copy paste when ready.
Short version- Mae I get it - in the same cancer treatment network. It’s always something. I had Enhertu #2 today and am awaiting SEs. I hope this is a good drug for us both
Congrats to all those with stable scans! Living and Tanya.
Take 30 min naps sometimes around 5pm but I sleep 2am to 11pm.
BevJen I want to know immediately. My DH said waiting is not going to change what it is, and I can start coming to terms with it sooner. This has been helpful. Although now I get scans at MDA and talk to the doctor about it the next day.
Candy- I agree keep advocating for yourself! You are the one living with your particular cancer 24 hours a day, not them. Could you get a new palliative dr.? Just a thought.
Mel- lovely paintings! I had no idea they were paint by numbers!
sF cakes- nice landscaping. You would laugh if you saw our backyard.
I want to see Top Gun too, but haven’t seen a movie since Covid. Would love some nachos and a wine,will be checking the seating charts to see how full weekday showings are. Hello everyone.
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kikomoon, I hate losing a post. I've started writing longer ones in Word and then pasting into the Reply section. Plus, I can never remember all the comments people made.
I haven't been to a movie since COVID.
moth, I'm thinking of you!
mel, we are a tough bunch of ladies (and gents). Cancer picked the wrong bitch, right?
Waving hi to everyone in the living room.
Carol
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Tanya, So happy you're stable. Same goes for Living.
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Tanya- yay for stable! Quick correction - Top Gun is Navy (since dh is retired Navy, I felt compelled to clear that up, lol)
Mae - I feel your frustration, I hope they get it sorted soon. And the hot tub in the mountains sounds fun.
Rosie - I nap sometimes. Usually just a cat nap, but sometimes I'm down hard for a couple hours. When that happens, I just figure I must have needed it.
Kikomoon- it completely sucks when you lose a post. After it happens, I always say, "Next time, I'm going to...(fill in the blank)," but, of course, I never do.
The rodeo was fun tonight. There was a nice breeze and the sun was behind us (for the time it was still daylight), so it was not as sweltering hot as I thought it would be.
I finally got a partial prior authorization! The two codes that needed extra justification, still need extra justification, but it's progress!! I left a message with the nurse supervisor. Hopefully, it will move forward again on Monday.
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Mae - I’m planning my trip to visit - your hot tub, wine and scenery sound divine! Sorry about treatment screwups. Have your temps been outrageous?
When I had my hip replacement last month, the Ortho was supposed to send the part that had avascular necrosis for pathology. Doc never did. As a MBC patient, I sure as shit wanted to confirm there were no Mets in there but now we’ll never know.
On the other hand, I realize one of the reasons I feel so good and have more energy is because I’ve been off Ibrance since just b4 surgery on 5/10. I dread going back on it, knowing what it will do. I told hubs I feel like Tigger and not Eyeore. I see my MO on Wednesday and know she’ll start me up again😔😔. Bye bye energy…..
Tanya & living - happy dance for stable💃🏻💃🏻💃🏻.
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Tanya,
Echo what everyone else has said—STABLE DANCE!!! So happy for you.
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Still feeling happy for Tanya.
Not doing much today. Made a less than the best breakfast which made me decide to go back to just mayo, ketchup and queso as wet ingredients in meals and dry seasonings to make them taste different. I used the onion chip dip, just a small spoonful on what should have been good tasting meal but it was gross. Sticking to regular stuff now jeuje up with seasoning.
Also instituting for myself a 10000 steps a day throughout the day to combat sitting I do for all the surveys. Not trying to do it all at once and can include indoor marching, treadmill or even back and forthing across my driveway, sounds weird but could totally do it. I would like to lose weight and gain leg strength. I did practice getting off the floor without pushing too much with hands. Forgot to use yoga mat so knees were unhappy but pushed myself up. We will see how this all goes. Keep you posted.
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So today, my province has dropped all mask requirements including hospitals and only leaving long term care facilities requiring masks. This really makes me scratch my head because to my mind, you would think hospitals with in patients who may be immune compromised or cancer centers should still maintain masking. I will find out in about a week and a half when I get Herceptin if the masking rules are still on. Still my plan is to mask in public spaces including the bus. I tried without but hated every second of it. May stay masked around brother and family since they stopped masking. Have to see about that.
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This is in response to Candy's post about her palliative "care" team. This is a quote from Dr. Google (this is the "good" Dr. Google, not the quack one.) I put this quote in one of my early blog posts. I think Cand'y team needs to be reminded of this!
"palliative care" is defined as "compassionate comfort care that provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness."
Carol
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Goldens, temps are ok for me (80’s mostly) but the sun just bakes everything up here, it’s pretty harsh even for the plants and wildlife. Fortunately it’s dry and breezy.
Mara, I’m surprised to hear hospitals dropping mask requirements too. I’ll continue to mask in public in the bigger cities but I have stopped masking when I go to town out here. I stay updated on local Covid cases and in the last week, only a single person tested positive in the county, it’s very rural.
Quiet weekend here, just gardening chores.
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Carol - there was nothing compassionate in our Candy’s recent palliative care visit. Seriously disappointing and sad.
Also, very interesting article in Living Beyond Breast Cancer: https://www.lbbc.org/news-opinion/palbociclib-does-not-improve-overall-survival-metastatic-breast-cancer
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Goldens- Interesting article. I got 4 years out of Ibrance--my PFS (progression free survival) statistic I guess. I don't know my OS (overall survival) stats yet, as I am still alive, but I got 4 extra years from Ibrance/Letrozole. Maybe it was the Letrozole more than the Ibrance that worked so well for me. Who knows.
Sunshine and Goldens- Yes, I am disappointed with my Palliative Care Team (doc and social worker). But, maybe it is how I communicate with them. I do question my docs-- ortho, rheumy, PCP. And I let it be known. A doc will prescribe a med-- pain med, etc-- and I question the use of it. Then I tell Palliative Care that I read/research potential next cancer treatments. I guess I portray to them my distrust of docs in general, and they think I should trust my MO in particular that she will do the right thing for me with my future cancer treatments. I guess I portray some anxiety too. We kind of were going around and around during my Palliative Care meeting the other day. I can be like a dog with a bone. I think they just want "easy" patients that they can do the appointment and go to the next patient. I was holding them too long-- I did go over my allotted time (they give me 1 hour Zoom appts). I went 10 minutes over.
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Do you guys ALWAYS take the meds prescribed by your docs?? I know the cancer meds, but other meds.
For instance, the new rheumy I just saw recommended Plaquenil for my autoimmune disorders. I was on this med 5 years ago, before the cancer. With the cancer diagnosis, my then rheumy stopped the Plaquenil and has refused to restart it. This rheumy said we can try it, but I would need close monitoring of my blood counts. And specifically stated in her notes (notes show up in the patient portal) that other RA meds would not be advised. So I am thinking of not using Plaquenil. With each 3 month scan for the cancer I may be looking at changing cancer treatment. What if the next treatment would definitely not work with the Plaquenil? And I have not been on it for the last 5 years anyway.
But, I fear I am going to alienate yet another doc when I tell the new rheumy that I am not doing her recommendation. They get defensive. Will she "fire" me if I do not take the meds she orders?
Good grief.
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Candy, good grief is right! I've had one doc recommend a med and my MO said, "Absolutely NOT!" I feel like we can be in a tough spot if we question our care team, but to just blindly accept every word they say could lead to some bad outcomes.
goldens, I hope I didn't offend with my palliative care quote. I'm truly sorry if I did. I just wanted to point out what palliative care SHOULD be.
Carol
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Candy - no, I do not always do what my doc tells me to do or take the pills they give me. Once a Doc gave me blood pressure meds that pretty near killed me. After several days Hub carried me into the pharmacy where I asked the pharmacist what the deal was with these pills and he said, "YIKES!! Why are you on this med?! This is the med of last resort !! " When I asked my Doc why he gave me that med he shrugged and said it's because he had it in his drawer because some drug rep gave it to him. So, are our doctors experts in medication and their effects? NOT EVEN CLOSE! I refer ALL drug questions to my pharmacist.
Okay.
I need your considered input.
I have a situation.
Daughter and I have a rocky relationship at best. She hates me and no, I am not exaggerating or being dramatic. She treats me terribly at the drop of a hat. Anytime things don't go her way or I do not agree with her, I am the bad bitch who is responsible for destroying her life. This is what she thinks and always has. So things between us are surface good as long as it all goes according to her plan, her ideas and her schedule.
She texts me the other day to say she's just had her IUD removed and hooray, she has an appointment to have her tubes tied. SHE'S 29 YEARS OLD !!!!
I have NEVER told her that a woman has to have babies to be complete. I have NEVER told her she owes us Grandkids. Never. I do mourn that we never will have Grandkids. But I did not say that to her. I totally support her decision to be childless. But oh my god, OH MY GOD, DO NOT MAKE THIS DECISION YET !!! I know so many women who were convinced they never wanted kids and then 8 years go by and they meet some special guy and everything in their life changes and they have a baby and are so happy. Do kids solve all the problems in your life? Hell no ! But I can't help but feel that Daughter should allow herself 10 more years, or 8 at least, before making the permanent decision.
I have been so upset I can't sleep. And when I texted her (because we cannot speak, hot topics lead to personal attacks on me) that she should NOT DO THIS, she launched into how I want to control her and how I have to respect that it's her body and her choice and she's under no obligation to provide me Grandkids and maybe if I'd done things differently and enabled her to have what she wants (house, acreage, horses and new trucks) that she might be willing to have babies but since we have not handed her these things (because we are not able to, we don't have these things for ourselves for god's sake!) she is forced into making these decisions. So this announcement of sterilization carries with it the concealed weapon of guilt and blame, pretty typical for her. She is doing what she's doing because we failed in our obligation to provide all the things to which she imagines she's entitled.
Wow. I am really kicking dirt on my kid right now. But I am so deeply, deeply hurt. Hurt that I can't even talk to her about this and council her to wait. Not for my sake, but for hers! If she hits 37, 38, still does't want kids, fine, great, tie away. BUT NOT YET !!! This is not me wanting to control her body. This is me wanting to spare her from a potential huge regret. And can I say that? Can she see that I care? No. No, she says I'm just mad that I can't control her. As if. She acted so ugly and so brutally attacking that I quit communicating. I have cried and my guts churn. But I am mad. Mad at how fucking stupid and ignorant she gets that it shuts down all communication and conversation. I'm all for family fights as long as they are fair and follow rules of engagement, but she goes for the personal gutting and slaughter every, single time and I am so utterly sick to death of it. I want her to not do something she might regret, something that she can reasonably do at a later date and all she can see is that I want to control her. Oh my god.
In all honesty she probably should not have children for all sorts of reasons. But who knows what the next 10 years will bring and I hope, hope, always hope, that maturity and a different world view will dawn on her. I hope she gives up the hate and blame game. I hope she just puts this decision off for a later day, because you are a much different person at 40 than at 29 and one of those people is allowed to make the no-child decision and the other might be jumping the gun.I feel gutted, I feel hated, I feel crushing sorrow and desperate fear for my kid, that she is heading down a path of maybe much regret. And I can't even talk to her. At this point, I don't want to. I feel a terrible sense of being done with her. This is not going to end well. Not because she doesn't want children, but because her personal conduct is criminal and abusive and I am so tired of it. Am I wrong?
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Runor, this is a topic I know well but from a different perspective. I knew I never wanted kids before I was old enough to drive. I made it clear to my parents too, several times but that didn’t stop them from saying “you’ll change your mind”, “what if your future husband wants kids”, well, I’ll live with my regret or adoption is always an option. And the wedding gift they gave us, an engraved fancy silver cylinder for birth certificates got equal amounts laughter and stink eye. We remain childfree and love it. There are so many opportunities for everything when you can just pick up and move, travel, socialize and financially, the cost is too high (for us anyway).
It’s clear that your concern is coming from a good place, no one wants their kids to make mistakes and live with big regrets but at 29 she really should know herself and with how she treats you and behaves with blaming and entitlement, I honestly wonder what kind of parent she might be? Perhaps it’s better to let this one go.
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Pocket duty list for week of June 12--
Tanya-- MO for results of scans Tuesday
BevJen- MO results Tuesday
Goldens- MO Wednesday
Sunshine- Scans Wednesday
Anyone else?
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Carol - no offense from your comment - I was just emphasizing what you said!
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Runor,
I see that you deleted your post, but I wanted to acknowledge the pain I saw in your message. Children can be SO hard on their parents, and I saw everything you said as mostly venting, which you have a right to do. I also acknowledge Mae’s perspective on the topic since I am also childless. I wish your daughter could stop seeing you as the bad guy and realize that one day you will not be here to treat as badly as she has treated you. I am just so sorry to see her continue to hurt you with her words. Prayer for healing and for her to see how much this hurts you.
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