My Husband, My Life, My Love, My Family, My Cancer
Comments
-
today was better. I had to go back on my medicine that I was originally on. My system wouldn’t allow a higher doseage. So my mouth pain is here to stay. So I’m going to ask for a reduction in my ibrance to 75mg. I’m hoping that will help. All of that for nothing. Coming off opioids is some serious shit guys. I was even tiering down . Hit me like a brick. I was hearing noises in my head. Dizziness like you wouldn’t believe, sweating. Sickness vomiting. I’m just going to keep my old regimen and have some pain. I have no choice.
Candy ~ thinking of you.
MarA~ hello dear. How are you feeling. After your fall?
Living~hoping you’re doing well.
Emac~ thanks for the kind words
Cookie~ good too see you.
Sunshine ~ how are you? Today?
Goldens~ thank you for the sweet comment on my post about my kids. It means alot.
Tanya~ hello dear. Hope you’re well.
0 -
Mel, my back is a bit sore but I am fine. We are due for a bigger snowfall again tomorrow. Property manager emailed she was sorry about the fall and that apparently they are getting new snow removal people and we can salt everything. At this point I give up on the whole thing.
0 -
Geez Mel that sounds absolutely awful! Sorry you had to go through all that just to be back at square one. Glad that is behind you and I hope the dose reduction is good to you.
Mara I sure hope the new snow removal company and the property managers do a better job. Crossing my fingers that you perhaps finally got their attention. Sounds like your in for a couple days with the stupid snow although I'm sure you have a list of busy work. Glad your feeling ok.
emac You're not a downer, unfortunately this is the crap that keeps us at night. I believe we will all know and be at peace with stopping when the time is right:( Wow I haven't been to a movie in a couple years either I hope you enjoyed it and got extra butter on that popcorn!
Hope to get out for a walk today ahead of the crappy weather coming in tomorrow . Hope everyone has a good day!
0 -
Well the anesthesia for the Port removal kicked my butt. It was "twilight sleep", "conscious sedation", that type of anesthesia. The anesthesiologist that came in the room before the procedure said it would be Fentanyl and Propofol, for those on here that know drug names. I think I have had both of those before. But..... in recovery I felt awful. I asked the nurse and she said they added Ketamine too. I don't know if I have had that before, but I think that was the culprit. The room was spinning and I was nauseous. They gave me a Sprite, but nothing else. I was in recovery for 30 minutes, as far as I can figure from talking with the friend that took me. Then the nurse told my friend to go get the car, and I would get dressed. The nurse had to help me dress and I was dry heaving. At the door, the nurse said that I should close my eyes for the ride home (30 minutes). I got to my house and dry heaved again when getting out of my friend's car. Every time I turned my head, the room spinned. I felt that way for around 7 hours.
I feel much better this morning. Incision just a little sore. No showering for 2 days. No lifting over 10 pounds for 1 week.
But I am glad the Port is out.
0 -
Candy, I am going out with DB for some groceries tonight, will bring cleats for shoes if needed and yes, I am not going to worry about clearing the snow. If neighbours want to clear it, assuming the property manager does not do it, let them. I am sick of it. I realize I fell the other night as I twisted myself around to get the bag of garbage. Next time will be smaller bags, use both hands and just toss ahead. I know the winter is almost over and snow does clear up by virtue of the sun being closer. I just need to get over the fear of falling, make sure I have my phone and call an ambulance. In the meantime, doing some sit to stands as somebody here mentioned as part of strengthening my legs.
Yesterday I earned over 200 dollars for an offer on my survey site so really wanting another eggmcmuffin breakfast and then start some walking I think. Marching on the spot to Leslie Sansone or Paul Eugene is what I am thinking after breakfast. Laundry is on the go now as well, beyond that, I am not sure.
0 -
Candy I hope your anesthesia se’s are gone with the port and you are feeling good.
Mara that snow and ice removal is so dangerous. Be safe as you go through your daily routine
Mel 75 will be a good reduction for you. I’m sorry you had to go through all of the medication drama. Ugh
Waving hello to all
Tanya
0 -
Tanya, thank you, today the snow is not bad, have not been outside, tormorrow will be the snowy weather. I may wear cleats tonight and take them off for the mall walking.
I found something that should be helpful for myself, it is an eldergym workout, the fellow is a PT so may start following those workouts to keep me on my feet and strengthen legs etc. I know I am not elderly but upping the balance I think should be the goal.
0 -
Mara~ I’m so glad you weren’t hurt. Those management folks need a kick in the ass.
This medicine thing is throwing me for a loop! Ugh!
0 -
Well I feel stupid. I showed up for my labs this morning and no one acted like anything was wrong so I had them drawn and proceeded upstairs to infusion for my xgeva/faslodex shots. The lady at the desk looked surprised and informed me that my appointment was not until 9:30 and she couldn't even check me in until 9:00. Not me feeling awkward standing there at 7:45! I usually have about an hour to kill between labs and injections anyway but now it's two, so here we are.
Mel and Candy, I hope you both feel better and the SEs are gradually getting better.
Mara, sounds like you have a good plan. Stay warm with all that snow! I will cross my fingers that the snow removal company does a decent job. It's cold here but we are just expecting rain from the tail end of California's atmospheric river.
0 -
Oh, mara, I'm glad you're "only" sore. I hope the new snow removal people actually do their job! Nice work on earning $200!
Emac, I'm glad you shared how you're feeling. If we can't share here, then where??? I'm sorry about the confusion with your appointment time. I hope the person at the desk was at least nice and not snarky. You're a STAGE IV CANCER PATIENT, FOR CRYING OUT LOUD!!! (Sorry for yelling – OK, not sorry!)
Mel, I hope you're feeling better today.
Cookie, I hope you get your walk in before the crappy weather sets in.
Candy – wow. I'm sorry the anesthesia kicked your butt so hard. Post anesthesia nausea is the pits! I remember once while in recovery for outpatient surgery (don't remember what) I asked the nurse to put the head of my bed up. She did and I got really nauseated. She kind of yelled at me for asking them to put me up too soon. I was too out of it to ask how the heck I was supposed to know I'd get nauseated when they raised my head??? Sheesh! I'm glad you you're feeling better this morning.
We cancelled our trip to the Ahwahnee Hotel in Yosemite next week. Park was closed due to snow, and now they're expecting heavy rain and probably flooding. Oh well. I did make appointments to see the neurosurgeon, neurologist (apparently, they're two separate things), the ortho surgeon and now a physical therapist.
Waving hi to Tanya and all the rest who have (or haven't) posted.
Carol
0 -
candy - so sorry that you had those side effects from the anesthesia. Nausea is the pits. I’ve been fortunate that through all my surgeries I’ve never had a problem with anesthesia.
Sunshine - sorry about the trip. I would avoid that area like the plague given the forecast. Better safe than sorry!
We have another winter storm warning…8-10” of snow predicted. Hope forecasters are wrong again. Stay safe
0 -
Candy, I saw my onc today because I woke with pain at my port radiating to my neck and shoulder. I have no fever and there is nothing else obvious so they are going to schedule a scan to see if it "moved" or something. They don't want to just remove it although i don't use it much right now, just once a month and when I get scans. It draws fine. Your post made me glad we are waiting... If it hurts more, or I get a fever, etc., of course we will remove it.
I read this thread but don't interact much, but I am praying for Mara and Micmel and others. You all cover what I need, and yes, I feel like I am dog paddling in a lake with no shore in sight. Some days I just want to stop, but then my granddaughter crawls up in my lap and tells me she loves me. Makes me want to fight on.
0 -
Intolight- Have them check for a DVT blood clot. Ports can cause clots in the upper extremities. I felt, in my case, that the risks of having the Port outweighed the benefits. I have had a DVT blood clot in that area before, and then a blood clot in my lung years later. So I am prone to clotting. Also, Ports can cause infections. And the longer you have one in, it can adhere to the vein wall and they are harder to take out. Mine was in 5+ years and I was scared it had grown in,,, but it did not. I was just using mine for blood draws and dye for the scans. Not for infusion of chemo or treatment. So I felt let's remove it and put one back later when I really need it. The anesthesia effects were not fun, but I am still glad I did it.
0 -
intolight~so good to see you. I hope you're well. It's always nice to see you. I hope things are smooth in your world. Sending hugs. Thinking of your port
0 -
Well, wore my good boots not cleats and they were comfortable, did a good amount of walking around the mall and the grocery store we went to after. My sister in law gave me some good advice when it comes to ice. She observes that I show a lot of fear before going across which can impede balance, she told me just to walk the ice as normal since my boots are a good traction boot. The ice was not super bad as I salted it as well. I was smart and got older DB to bring in my groceries. Should not need anything else for a while. I am glad it was so easy to get in the house. Going to start believing I won't fall and stop over thinking. I feel good from all the walking.
0 -
sounds like you have a nice lil family there Mara. I’m glad. And say to go on the $200! Atta girl.
Trying to sleep ugh its either I want nothing but sleep. Or I can’t sleep. Sucks. It’s like my body is not mine anymore !
Love to all!
0 -
Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.
Important update:
We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Your existing private messages before March 12 will all automatically carry over to the new forums, but private messages sent and received during the migration period can not be moved over. And the threads you favorite during the migration period will not be bookmarked as favorites in the new forums. Please copy and paste any private messages sent and received during the migration period that you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums if you selected them as favorites during the migration period.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
Important update:
We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
0 -
thank you Divine. Good see yo and hope you’re well.
0 -
Taking it easy today. Laundry, surveys and trying to organize storage in the house. I want more close door cabinets, I also use my oven in the kitchen inside for storage since it is unused. I do have space in my cupboards in the kitchen as well and could get some dressers that are less deep as bedroom storage sucks. Only exception are clothes. I bought some velvet hangers and mini clips that allow me to hang clothes from that and some over the door hangers. Keeps clothing space to a minimum. I also will eventually get another pantry cupboard in the living room but that is not urgent right now.
0 -
Hi! Popping in to say I am still here but barely time to go back and read all the days and days of posts. My husband has MS and it has been mainly a minor inconvenience but last Thursday he lost the use of his left leg and fell several times. Earlier that week he shovelled the walk when we had snow and was fine. The next day he stumbled over a snow bank and wrenched his back. That is when his leg got buggered. He has been in hospital since last Friday. CTs, Xrays, you name it. He has a lot of stenosis and bulging discs impinging on the sacral nerve. I think that has more to do with it than MS but we'll be finding out more as we go along. He is having a five day run of steroid infusions. He will be getting an MRI eventually.
I have been busy going back and forth, back and forth to visit and bring him food that is edible. I picked up a walker and shower chair from Red Cross and getting a Clean Cut bath tub conversion, something we should have done ages ago. They cut a chunk out of the existing tub, and seal up the space. Way cheaper than ripping out the tub and tiles and putting in a fancy walk in. Some of you ladies might want to consider it.
Exhausted trying to maintain some level of order in the house, I have my PET on the 15th. I guess this situation is good. It keeps me from freaking out about scan but then I think "What if my DH is really impaired and I have a crappy result? Maybe we'll just holds hand together and jump off a cliff.
I don't know how much faith I have in the "new, improved" site.
0 -
oh elderberry - sounds like your plate is very full. Hope you can get some answers for your husband’s problems. Hope his medical team is on theball. Please pace yourself - self care under your circumstances is so vital. Not everything needs to get done at once. We have a walk-in shower in our master bath and have a tub shower in the guest bath. I really want to put in a walk-in bath. The tub is so narrow. I used it in the fall when I had that full body rash but couldn’t get out of it. Thank God my hubs was home to help me. I would love a nice soak but with my shoulder I can’t risk getting stuck - lol!
0 -
I agree about the walk in. I would love one now. I’m not as flexible as I once was. Elderberry, you’ll be in my thoughts. You’re dealing with a lot. Hope DH can reach stability again. My x husbands father had ms it’s tricky . Hugs to you in support.
0 -
hope candy is feeling good today either port.
Hello Goldens. Emac. Sunshine, living, Tanya, Mara.Mae , dodgers, Chicagoan…It's a rainy Friday night. Soooo not going anywhere DH is working on taxes. Very painstaking process. Lots to do. hope all is well for everyone!
0 -
waving to Micmel
I read every day just struggling to get thru each day as my current treatment SUCKS.
Elderberry- prayers to you and DH. Hope for good results to you both. And thanks for the info on cut away tubs. Was not at all aware of such a solution.
My DH could be facing a 2nd open heart procedure next month to repair a heart valve. They plan to make the repair via a heart cath but if they can’t, they will have to crack him open (he underwent bypass surgery while I was going thru chemo back in 2017). I don’t know how we are going to get thru this all as he is my caregiver. I cannot “do” stairs and kitchen is upstairs so he has to fix all my meals. Between still being on oxygen since 2021 and my own new heart issues from red devil 6 years ago, I am pretty much at everyone’s Mercy. SUCKS
Sorry for the whining but these treatment days are terrible right no
0 -
Thanks Mel for the shout out. I am doing much better. Surgery was Wednesday. Wednesday was rough. Thursday I still felt nauseous and just not myself, kinda foggy headed. Friday was much better. Today (Saturday) I am back to my "normal". Incision is a little sore, but healing nicely. I put a new dressing (large bandaid) over it every morning after my shower. To protect it against my clothes and to keep it clean. Cannot lift over 10 pounds for another several days. That is hard. It doesn't take much to be over 10 pounds. Cat litter, trash bag of trash, etc. So I have to be careful. Even a hamper of dirty clothes is over 10 pounds. But.... so glad I got it done.
0 -
Dodgersgirl, having legit problems is not whining and we wouldn't mind anyway. I'm sorry you and DH are facing harder times right now. Sure wish I lived closer, I'd be knocking on you door ready to cook.
0 -
illimae- thanks for the kind words!
Yesterday was the 6th anniversary of original DX. I am grateful to still be here, fighting but those 10 crappy days from each treatment is so tiring and miserable
Thanks again for the kind post. The compassion comes thru loud and clear and made me smile.
0 -
I agree dodgers. I’m sorry. Imm be thinking of you and your DH. I’m sorry things are hard. Hoping things turn out ok for you. Treatments are terrible.
0 -
Hi. Boy we ladies sure go through a lot of crap!! My husband is getting more stable but not all there yet. He is supposed to come home tomorrow. We are hoping BGHJ can arrange on of their Hospital transfer vans to get him to our place and down the stairs from the sidewalk (our lot is lower than the city sidewalk) then back up the stairs to the house. Once he is in there is walker.
They have his MRI lined up already for March 14 and I could take him but I don't know if he'd be ready to manage the stairs to get into my car. Burnaby General where is he now does not have an MRI. He can go to the same place I go for my infusions at Lions Gate but the logistics are a problem.
If I go back I'll lose this post. Candy, was your surgery for a port? I can't remember. Dodgers ?
I am glad we have a safe place to whine. Besides, it is not whining it is legit.
0 -
Oh, dodgersgirl, I's so sorry. I don't even know what to say. I wish I could help… I won't even say, "Congratulations" on being 6 years out. It still sucks.
Hi to mae, mel, elderberry, mara, and all of you sweet ladies. If there is more than a couple of posts, I have to write my post in a separate Word doc, then copy and paste it. Otherwise, like elderberry said, I lose my post.
Mara, where are you this morning?
Carol
0
