My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Hi everyone, I have been quietly lurking and reading everyone's posts. Thinking of you all and keeping everyone in my prayers. I appreciate the pictures of the doggies, they make me smile.
Nothing has been going on for me really, things have been pretty stable other than my mood? which seems to get worse. I have just been thinking a lot on things and missing the person I was before this, which was just last year. Also just thinking about the future and all the 'what ifs' which I know is never good but my mind just tends to go there. Seeing a counselor but really just want someone to fix this immediately or wave a magic wand. Even things that make me happy like spending time with my niece and nephew make me upset because I am worried about not being able to watch them grow up. I don't have kids of my own but am really close with them. There are just a lot of emotions and thoughts in my head and sometimes it feels like my brain is going to explode.
Anyway…seeing my MO next week and scheduling CT scans after to see if Kisqali is doing its job. This is the first CT that I have had after being on Kisqali. I had one in June after I was on AC for a few weeks which showed shrinkage in the liver then, so hopefully it is continuing in that direction.
Thanks for reading along ❤️
5 -
Intolight- I "liked" your post. That is the first time I have used that function since they added a like button. But I do understand. I am "stable" at year 6, but I feel crappy from the meds that keep me stable. And people do not understand that. They think you should be fine, since the cancer is quiet. And, really, I am tired of trying to explain it to everyone.
3 -
it’s frustrating beyond words. “But you look so good and you have hair”. I tell them I’m still on. Chemo, and the side effects are brutal. I totally understand that feeling. People do not fully get it at all.
2 -
keris It’s good to see you! I had many of those types of thoughts also and they were there always the ones that made me cry. Wondering will I be here for all the big events , kids weddings, grandkids etc. Over the past year since being stage four I have learned how to control those thoughts or I would just be crying all the time. It’s hard and it stinks.Hope Kisqali is kicking butt!
Irish i’m so sorry you are still struggling, it’s just awful. I sure hope that this new diagnosis leads to some type of treatment to give you relief. I’m sure you’re just so tired of it all, tired of the research and reading , its so draining. Hugs.
Theo you’re a sparkle here and always bring a smile.
Oh the comments, don’t ya love them lol. Yup the but you look so good it’s one of my favorites. Sometimes if I feel sassy, I will say I wish my insides matched my outside but it doesn’t. I try to remind myself I know people mean well, and they just don’t know what to say, but still…
2 -
shana, yay! Congrats 🎉
Micmel, Theo is so sweet
Hi to all
DH is back on working on the cabin after a couple months of side projects, I hope the momentum lasts. He’s also cooking tonight, which is nice. Burgers and tots, so I’ll get back to healthier meals tomorrow. The pups are good but wonder what the heck is going on since we moved everything around in prep for final flooring and installing wall panels.
2 -
Cute pups!
Cookie, your response is better than mine. I want to say "How do you expect me to look!" Not very kind…
3 -
Well, had to cancel my paratransit and will cancel the echo tomorrow. No sidewalk and the ground is full of holes, I would never make it to the bus even if it was able to get to the street. Too dangerous. Add to that some D that showed itself a couple of hours before I left with older DB. I took the immodium but wouldn't you know it, it showed up at Costco, spent the time in the washroom which sucks. Throwing out what foods I used for supper. Eggs and english muffins will have to do. Nothing exotic anymore. My brother donated his peanut butter which I will pay for and had them stop at a drug store. Going to toss the rest in the garbage. Not sure what else but we will see.
2 -
Grrrr. I wish you were all so much better. I've been stable 6 yrs too. Yay. I can't imagine why I still look good. I just heard that last weekend. I take it as an opportunity to educate them. My meds make for a bad menopause type symptoms. So I've been lucky. Could be better. Then I say I will be on meds the rest of my life. It gets harder as it progresses. People don't escape stage 4. Of course I'm thinking of everyone here. This one said "I thought everyone pretty much got cured of cancer.i don't here much anymore." I was at a party or I would have given her some numbers.
2 -
I have to wonder what transmen are told about the lack of estrogen before they start to transition. I imagine the permanent premenopausal state will be a constant reminder that they are still a women.
1 -
Hello to the group. I've been quiet for a bit. I think this week things started getting to me. The smoke here has been atrocious. I am not directly in an evacuation zone but there is a large part of northern CA that is and some areas along the border of Oregon that are new today. Earlier the sky was almost blue but tonight I can't even see the trees across the street hardly. We ended up not going to the coast as planned because it would have landed during the days after Taxol that are typically the hardest in addition to the fact that a large portion of the highway is closed due to another fire so it seemed smarter to postpone.
I got my simulation scan and mask made yesterday for the SRS treatment. I was told that it will likely take about three weeks for the actual therapy session but it can be done in one session so that's great. I am doing it concurrently with Taxol. I was pleasantly surprised that the mask is open across my eyes and nose. It' looks a bit like a motocross helmet. I was picturing something more like Jason from Friday the 13th so this was okay. I'll have to see if I can get a picture. I have been so focused on getting through the Taxol I think the SRS hasn't really registered. It's just one more thing. I find myself reverting to my introverted emotionally shut down coping strategy. I don't remember a lot of my time from my initial chemo treatments due to this coping strategy so I'm trying to be more expressive and ask for help this time. I actually cried for the first time last night about it all. I usually don't cry when I'm sad, just if I'm really pissed or frustrated. It's all going to be okay. I believe that. I just have to get through Taxol and then I think it will be better.
Intolight - Thank you for the prayers
Shanagirl - I am elated for your news! I also completely get that it is a mixed blessing when you feel like crap.
Irishlove - I continue to think about you and keep you in my prayers and I am hoping that this new diagnosis may lead to a treatment that brings you relief.
Thank you for the early birthday wishes. Saturday's are typically my hard day after chemo so we are playing it by ear. I thought about making my own carrot cake or carrot cake muffins but we'll see how tomorrow goes. I might see what Costco has too. It's just me and my folks so the three of us don't need a lot. Today was Xgeva, Faslodex and Taxol so I'm probably going to head to bed a little early. Love to all of you. In pockets for whomever needs it. ❤️
3 -
Happy upcoming birthday Emac, hope it is a good one for you.
So did cancel Paratransit and my appointment since the street is so torn up. No sidewalk in sight either. Dangerous for me. Not going to scare myself that I am stuck in forever and I still have plenty of groceries. Took enough immodium to knock out the D. Not sure what that was about but whatever. I am hoping that since the school year is coming up that the construction will at least be to the polnt that the street will be walkable enough to get to a bus stop. Ticks me off but whatever, rant over.
Nothing planned today, already got a larger load of laundry in the dryer, surveys etc as well. Looking to more regular food today as well.
1 -
Gailmary, your comment about "it gets harder as it progresses" I agree with that. I have a local friend that has MBC. I posted about this a few pages back. She was bone-only and was only on Arimidex, for 11 years, then she had progression to the liver. They started her on Verzenio, then switched to Ibrance, due to the diarrhea side effect. Someone compared me to her. They said she is still active in our friends' groups. I answered by saying "she is new to the "harsher" treatments. I have been doing this for 6 years. It is a cumulative effect. She won't feel so well in a couple of years." I hope I was not out-of-line, but, YES, I think as time goes by, I/we feel worse. It is hard on the body to be fighting cancer, and taking these meds. I am grateful that the meds keep us going, but they are no walk in the park to take.
3 -
the longer you’re on the tx. The worse the side effects are. I totally agree. Living with cancer is a job. Everyday fighting something.
happy birthday emac1 -
Mara So sorry you're still having the big D issues and it's the absolute worse to use a public bathroom! I too use Imodium my MO told me this week if your diarrhea is water to use Metamucil. Seems backwards but she said the fiber bulks things up. Figured I would share because I know I usually steer clear of fiber on those days. I have been good this week so I haven't tried it yet.
emac Wishing you a Happy Birthday, hope it's a good day and you enjoy your carrot cake. Stinks that you didn't get to the coast I hope you an reschedule soon. Glad you were able to cry, I usually say I'm in "auto-pilot mode". We all just keep going through the motions like robots to survive. Hugs.
intolight Yep sometimes you just can't help yourself to respond a little edgy..right???
Thinking of you dodgersgirl and all who are struggling.❤️
1 -
Candy, I totally agree with what you said about the cumulative effect, and recognizing that while yes, I am grateful for these meds, they are harsh on our bodies. Harsh.
When I finally met with my direct supervisor and dept director to let them know I was going out on extended (and likely permanent) medical leave, I explained in detail all the meds/shots/infusions, side effects, lab appointments, scans, fracture and subsequent vertebroplasty, etc to them. They were shocked. "We had no idea you had to do all that, still" is what they said. I think they understood for a moment that this is for the rest of my life, and how could I not be completely exhausted (not to mention taking care of my husband at the same time for 2 years before his passing).
I'm certainly not going to go around and tell everyone that amount of detail, but there are some days that I think about printing it on the back of a t-shirt and directing people to just read it. Maybe the front of the shirt could say, "if you don't understand why I'm exhausted, then f**k off"?
4 -
Happy birthday Emac! I hope you can find a way to celebrate one way or another, even if its not how you would have chosen. But celebrate some way, every year (or half year as per Mae's approach) is important!
Mara - having the same difficulties here with trying to get exercise but with terrible pavement and masses of aimless people everywhere. The amount of concentration to just walk is exhausting, but something as dumb as catching my toe can cause a lot of pain. I dont want to be stuck in the house any more but I dont know what else to do. We are going to try walking in the Gardens early this weekend and then go to brunch after. Feels like a slab of concrete attached to the side of my leg!
sf-cakes - I was joking with work husband this week that I should get a mug that says 'hey man, I almost died' on it for all the whining and complaining most work people go on about. Someone cant afford a second foreign holiday, someone elses mortgage payments went up, someone wants accommodation for their perimenopause moment of brief warmth, this or that and the other and its like well you are doing better than me, cause I almost died lol. (I was never truly in danger of dying from that embolism but its a non insubstantial number who don't survive so its still rather sobering). I didn't get welcomed back by anyone other than my line manager (mostly due to admin) so you really wonder what its all for, other than health insurance. If this hip turns out to require more intervention, Im not sure Ill be returning to the office after - I cant handle the cancer bs AND the office bs together anymore.
I repotted some herbs into self watering tubs this afternoon and hoping they keep growing - looks so nice on the windowsill. Long weekend here, not sure what we will be up to - tomorrow is going to be rainy and hubs is off to football match, so I think I may craft. Its been a while and Ive had some mental space to let the creativity form again.
1 -
@emac877 Happy Birthday to you. I hope it's a wonderful day. @illimae Love those pups. Hope your adobe gets finished soon.
Hi everyone. I had the chance to read each comment and wow did you ladies' hit the nail on the head. I do try to gently explain that I will be on meds for the rest of my shortened life. That's about as far as I'm willing to explain. Google it, is what I'm thinking.
Just wanted to comment that I am waiting on a spinal tap to see if this is paraneo plastic syndrome. So I am not diagnosed at this time. I pray it's just good ole MS, despite the neruologists opinion that it's not. He said it's severe depression causing physical, neurological symptoms. I'm cheating and doing gabapentin 300 mg twice daily to get thru the day. I'll have to call MO's office and tell them it is what it is.
Last night I was sitting around feeling lousy and sorry for myself, when in popped 9 yr. old GD, Genevieve. Well she taught me all about Minecraft and I don't remember a thing. But what a joy, peanut butter with two spoons, rice krispie treats and pop corn. Oh and a white mouse, Pippy that came to visit, too. What a wonderful break from sitting in a chair isolated.
In pockets for scans and any thing that you may need.
3 -
I was quite lazy today other than the indoor PT and marching. Going to get back on the treadmill, I say that to myself everyday but ready to make it happen. I did enjoy the eggs and hashbrowns this morning, bit of peanut butter mid afternoon and english muffins with refried beans and cheese on top, nothing to wild. Disposed of the stuff I thought brought on the troubles. I like the skillet meals but think I need the smaller size or wait til I eat through my freezer. Otherwise, felt perfectly fine.
1 -
(LivingIVlife)
Emac- Happy Birthday 🎂 🥳 Enjoy the day. I love carrot cake!
Shanagirl- great news for stable!
Irishlove- once you get a definitive diagnosis may a treatment be administered to help you. You are being whammied over and over. Glad you have your gd and mouse to put a smile on your face.
Mara- hope you are feeling better. The D's are the worst thing to deal with. With my gut problems I take an Immodium if I'm going out for the day.
Mae- those big puppy eyes 🐶!
Mel- Theo is the cutest!
I agree people don't understand how the longer we are on our meds the worse we feel. Many comments said to me on how I look and why can't I do all these things I want. I would love to take a pottery class but firstly it's always in the evening and it's 40 minutes away.
Belle is fast asleep hugging her Kong dreaming of the treats hidden inside!
2 -
Once again, I wish I had the magic words to make everyone better.
Irish, I hope you get some answers or at least some relief…
Belle is adorable. I love to see dogs sleeping with their toys.
Not awake yet, so typing is an effort.
Need. More. Coffee.
1 -
@irishlove I was reading about chronic pain management today and on the psychological management side, the pain relieving quality of distraction. It sounds like you had an awesome bundle of distraction show up at your door and had a great time :) You've had a lot coming at you the last few weeks so I imagine it was like a little vacation :)
Here is the article i was reading some interesting nuggets in there (although lets face it, at some point all the coping skills in the world aren't going to overcome certain situations).
https://www.practicalpainmanagement.com/treatments/complementary/biobehavioral/5-coping-skills-every-chronic-pain-patient-needs
1 -
Mae~love the pups! More pics please?
belle is adorable and precious!! I love dogs. They are so funny and sweet.
im sending hugs out to everyone. Lurkers also. Hope you’re enjoying the day.
I hope everyone is safe from fires or storms.0 -
@sondraf Ah, how sweet of you to comment and enjoy my little surprise. She has a sore throat today, so staying away from Nanny. I guess you are never too old to learn a new game (honestly I think I forgot most of it). Fortunately she is patient with me. lol. Yes I do believe that distractions of such nature do help deal with pain. I was sitting in bed feeling awful and maybe even a little sorry for myself. Turned into a wonderful evening. I can see why you folks adopt pups and kitties. They are so good as giving unconditional love. @emac877 I keep rereading your post and want you to know I'm sending love and encouragement your way. You must be a tough cookie to hold in the tears for so long. Let them flow and star anew and yes, ask for help! No one can do b.c. treatment alone.
Hi everyone. We are gonna watch the 6 o'clock news out of Orlando to see what's up with that tropical formation. We have an agreement that a cat 3 storm comes our way, we will evacuate. Otherwise, we will stay. There is so much stress evacuating with cars barely moving and dogs stressed out and trying to corral that outdoor kitty will be a huge challenge. Wishing that storm just dies out.
My ear opened today, but the intercranial pressure hasn't improved. It makes me so nauseous and off balance. Something nice has happened in all of this, DH has become my caregiver and is cooking. He's never cooked before. Basic chicken noodle soup but boy did he nail a steak dinner. Proud of him learning to cook at 76!
Hope that everyone has a beautiful pain free weekend and stay safe.
2 -
irishlove, so there is hope for me and my non-cooking DH still? (He's 71) He tries sometimes but only with me nearby giving directions. Stay safe from the storm!
2 -
Hi everyone, hope you are all safe and doing well this weekend. I went to my nieces birthday party this weekend, she is 5 and was able to enjoy myself but brought up a lot of emotions and thoughts that I would rather not be there. I feel like when I talk to others sometimes about it, which is a very select few, they don’t understand or maybe I not saying how I’m feeling and what I’m thinking the right way. That I’m scared and anxious and depressed and so many other feelings all at once. I honestly don’t know what would help to hear or reassure me which is frustrating as well. I appreciate all of you who are going through similar things, it just feels isolating sometimes.
Feeling some dull pain around my liver which I am hoping is psychosomatic due to upcoming scans and appointments but who knows.
3 -
Good morning ladies of the livingroom. I love reading all your comments and experiences. Thank you for your kind words to me.
@keris113 Hey girl …I know. I just want to wrap my arms around you and give you a big gentle hug💗
@illimae those two little faces are just too much. I love them, are they siblings, littermates? They remind me of my two pug brothers Ollie & Sammy, my pugs.
@bellelove70 Your beautiful shepherd baby looks all comfy and content in his sleep. A beautiful dog. What amazes me about dogs is they just love to sleep 💤🐾😉
@irishlove speaking of pain management, I went to my neurologist surgeon pain management dr on Friday at the surgi center. Everyone is so nice there. I got settled in mother bed with a warmed blanket around my shoulders, the cheerful anesthesiologist came in and inserted an IV in my hand, and then they thought me in the room with my dr waiting to give me the pain block injection in my crevice spine. The anesthesia goes in first, feels great , I get the shot in my neck and the kind nurses get me back up and bing me back to my bed, and give me some delicious Columbia’s coffee and some Lorna Doone cookies. So glad I got this done finally. I needed this shot for my cerviclestenosis in my neck. This will last for 6 mths. Or so.
Waving hi to you other girls and praying your day is pain & side effect free. God bless you all, and I love the doggie pictures you guys are posting🐾♥️🐾.here’s my 2 guys😊
2 -
Sondra, glad to hear that husband is taking such good care of you. Intercranial head pressure is no joke and I remember those symptoms well, in your pocket.
Not sure what is going on today. Ordered breakfast today. I was very depressive yesterday thinking about being trapped in my house due to road construction til I realized it was my family helping. They are worried I will fall but I realize that I need to get to the street and put out garbage etc. I cannot stay in. I take in their worry and project it on myself. I need to get to the point there is a sidewalk. Once there, no problem to get a bus and if I fall, so be it. I really have not fallen often and really am believing a lot of this is in my headOtherwise come winter, won't be able to get in. I think the first thing to do is steip out side and look on both ends of the street. It is almost the start of the school year so I cannot imagine how long it will be. I need to be confident and cautious and figure it out. My niece has offered to pick up groceries but she has no vehicle. I will make it easier to come home with groceries myself, I don't think I am as sick as others think I am and I need to do things myself.
Having a Mcdonalds treat this morning and exercising this afternoon.
In everyone's pocket today and and hope you all have a good rest of the weekend.
2 -
Thank you all for the birthday wishes. It was a low key birthday but a good one. My mom made me a carrot cake and it was great. I wasn't feeling too bad but had that post chemo exhaustion so we ordered pizza for lunch from our favorite pizza place. All in all it was a good day. My best friend is driving down from Portland today to stay with me for a couple of days. I have a bone scan and a CT tomorrow so she's offered to drive me to those. The smoke is thick again so I think I am staying in. Praying for a good rain storm without any lightning.
2 -
shana, what a cute photo of the doggies.
My niece and a friend are visiting for the weekend. We're going out on my SIL and BIL's boat today. It's a big one (to me) with two bedrooms and I think two bathrooms. We're going to just motor around the bay (San Diego) and then go get pizza on Coronado Island. We order ahead, pick it up and then eat it on the boat. It looks like it's going to be a really nice day. There is a really nice bay where we can anchor, and anyone can jump in the water and splash around. The little kids have school in the morning, so we won't be out too late.
I have scans tomorrow. I really hope they find "something" to tell me what's been going on with my lungs. Swallowing still an issue and weight is still dropping, although it's slowed down a bit. I'm bringing my own food on the boat since I don't think pizza is going to work for me. Mine is a soft, slightly overcooked pasta with alfredo sauce. I love DH's family and we should have a really great time together. Visiting niece is from Michigan, so we don't get to see her as often as some of the others.
Pocket duty for anyone who needs it.
Carol
3 -
Sunshine, your boat day sounds wonderful.
shanagirl, yes, the boys are brothers. We went to the shelter to see monkey and his sister mouse but she was spoken for, then they mentioned pig, who wasn’t advertised due to medical hold. They believed he’d do better medically in a home instead of the shelter, so we left with both that day. The mom was a tan terrier, the dad is unknown but almost certainly a black chihuahua. I love your pugs, super cute!
1
