My Husband, My Life, My Love, My Family, My Cancer
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Lily~post whenever it moves you. But you’re more than welcome to grab a comphy spot in our wood fire burn living room. I’m sorry you find yourself here and it seems like you have been through quite a lot. Hope your DH is doing well. Sending hugs to you!
Sondra~I’m sorry. It definitely does suck. Never good enough words to comfort someone I just hate cancer and everything associated with it.
You’re all on my mind.
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Sondra F sorry about your brother.
Welcome lilyfrombeppy. I’m asking, what subject did you teach,fully aware that you’ll answer whenever you finish with Christmas cards and executor of estate duties.
Waving hi to all. In everyone’s pocket eating snacks. Onc appt today shots and infusion stuff.
One of the contributors Lakewoman on the ibrance thread shot a 10 point buck and is 80 years young. That just blew me away had to share.
Tanya
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Philly- How did PET go? Any report yet?
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Wow Mae, love your trailer! Here’s to getting back on the road for you and DH. Biggest question I have is the toilet thing ( sorry all)... what with the drugs and the bowels not behaving, might be a thing. We’ll go for a cassette toilet, but any advice on how to deal with the ‘ waste’ gratefully accepted.
Trust me never thought I’d be posting something like that online..... or thinking at Stage 4 I might spend money on a wee motorhome instead of my funeral
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Karenfiz, forgive me. But I had a mental picture of you on the stage of a game show with before you two choices: casket, motorhome, casket, motorhome and the audience behind you is screaming MOTORHOME! PICK THE WEE MOTORHOME!!! Oh god I needed a laugh today. Thank you and get the wee motorhome!
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Karen, if I was in the audience, I would also be screaming PICK THE WEE MOTORHOME!! Need things you can enjoy now.
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Sandra, I am still sending you hugs and my deepest heartfelt sympathy.
Well, I had a good day today. Had to visit my primary care doc for a prescription refill. She is on the other side of town. I took two buses and over an hour to get there. Lots of walking between stops. Then after the appointment, walked a long way to catch another bus to another part of town to grocery shop at Walmart, a lot cheaper. In all I was out 4 hours without being super tired. It is different than cancer clinic day because you stay in one place, this involved a lot of walking, waiting at bus stops and riding. When I got home, I was not even tired. I am shocked and pleased. Saturday, I am actually going out with a friend to a wine bar. I have never been there but know there is food there so it should be good. Nice to be able to be a bit social.
Walking also feels more natural the new way as well, feel very steady and confident outside which is good since it is supposed to become snowy here. Still planning to walk to the hospital if I have time for seeing the doctor and my Herceptin treatment tomorrow
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micmel. Thank you so much for the welcome. I love your topic. I've been married to the love of my life for over forty years and can't imagine leaving him. Meanwhile, I've been on Ibrance and letrozole for 41 months. Waiting for Pet scan results and trying not to stress. Thank you for responding to me.
Kate
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I taught middle school (6th grade) general science for over 42 years in Maryland, West Virginia & Northern Va. I still go out at night to see the Space Station fly over and raise Monarch butterflies. I sure don't miss grading papers and too short lunches and bathroom breaks! I lift my glass to all of you who are still working.
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Kate~ you and I are are extremely close in months of Ibrance I wish you well on your scans mine are almost on deck myself. I'm trying to keep calm
And I know the dc area Montgomery county public schools there my husband works for the county as well, he's not a teacher. But he does from time to workwith the teachers. Small world really!
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Welcome newbies!
Lily, sounds like a tough go of things for you and DH, I’m sorry you’ve got so much to deal with.
Karen, I’m not sure how trailers/caravans are used in Europe but in the US, we typically stay at campgrounds which have places at the sites to hook up the toilets to a drainage system for disposal. When not site camping, the waste tank is usually large enough to store it until you can reach a gas station with a special area for trailers to empty the tank into a holding tank that the station then has emptied/processed.
My voice seemed slightly better this morning but reverted back somewhat, maybe it was how I was lying in bed. No improvement on swallowing yet but I’m remaining hopeful that I’ll see progress soon. Also, no appointments for the next two weeks, so relaxing since things have been so busy.
Good morning all, hope it’s a good day 🙂
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runor that was a very funny game show image!
mara good for you getting out for that longer trip, longer walks and some fresh air. I sometimes have to rest after a heavy day like that so be sure to listen to your body today.
sondra watching a loved one go through this must be awful. I have had two sibs go through cancer (brother with prostate and sister with melanoma) but both were very early stage and required surgical treatment only. My cousin had lymphoma a few year back and I lost two other cousins to stomach cancer and a brain cancer. The hardest part of all this as you know is the time before the plan. It can seem like it takes forever. Nearly all of my siblings live in other states. The thing I appreciate most from them is the way they check in every few weeks. Just a text message to say they were thinking of me was everything. Feeling helpless across miles sounds so hard. Big hugsSo much for lexapro for me. I had high hopes becuase I did not have the nausea for more than a couple of mornings. This is generally the dealbreaker for me on anti-depressants. I have tried quite a few of them and they just do not seem to agree with me. My main issue is anxiety that can be paralyzing for me. I've been through ten years of therapy and have really done well. Depression was gone for years, anxiety was managed. But when that lung issue came up ( the docs thought I had lung cancer - thoracic surgeon and PET scan cleared that up) I found myself feeling really out of sorts so i decided to try another AD. I did fine for the first two weeks. On the third week I could tell that anxiety was way way better but I was sleeping heavily and for long long hours and when I did get up I was not feeling myself at all. No interest in anything or talking to to anyone or going anywhere. My husband and my sisters began noticing that my behavior was not awesome. It was weird - like I just wanted everyone to leave me alone so I could sleep or just not have to talk to anyone. So while the anxiety was ok the drug caused me to become more depressed than I've ever been. This is typical AD response for me honestly. It does the exact opposite of what it's supposed to do. Bummer!
Philly, thinking of you and hoping you've gotten positive PET results.
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Hi Moomala, I definitely do listen to my body for sure. I had an early MO appointment and then chemo after. I was short on sleep since whenever I have to be anywhere early, my body keeps me semi awake. I may have dozed 3 to 4 hours, it is normal. When I got up, I was very groggy and felt quite crappy. I decided I needed to walk to try to wake me. Between a big breakfast, granola bar along the walk, canned turkey I brought for later, breakfast sandwich etc. I still burned all of those things off from walking BUT every bit of walking makes me feel physically better. Makes me want to do more. I don't find myself feeling as tired.
I will say, I was getting annoyed with MO because people have been calling my fainting spells seizures which I totally disagree with. I had seizures in 2004 of unknown origin, nothing was found, am not epileptic. Fast forward 2016 when my brain met grew large, brain swelled and I definitely had auras and seizures then and knew when an attack was coming. Same with a faint, if I am going to faint, I have time to get to the ground. My MO was pushing REALLY HARD for me to take extra carbamazepine other than the dose I had always taken since my SIL and MO are calling them seizures. The problem with extra carbamazepine, or adding any other drug is that I cannot function. Woozy, dizziness, light headedness would take over. I have been put on tiny increased doses and it made me dizzy, light headed and unable to take a bowel movement without having to lay on the floor a while, sometimes before finishing. I do not have these problems normally. I am unwilling to consider taking any more meds or changing my med. I have even been referred my neuro onc again, which will be another pointless thing of her writing a prescription I will not take.
What nobody does is listen to what I am saying with regard to fainting. Nobody is listening that I am not having a seizure. I KNOW the difference and know my body after all this time. When I passed out after tripping and landing on my knees, I blame the shock and pain of the fall, I was not out long after phoning my brother to come get me. I have corrected my walk by picking up feet more so to minimize risk, back out walking. The fainting is likely not related to cancer as we cannot find anything in last CT of head, lung xray or bloodwork that would explain a physical cause. I cannot even take B12 without being lightheaded for crying out loud. My SIL did see the actual seizures and aftermath when tumor was growing plus she is epileptic so she is well versed so I give her more allowance to try and push me to consider more drugs. I just can't live in a constant state of drowsiness, wooziness, new side effects etc. That would the same for me as a chemo with horrific side effects. I won't take chemo again other than the targeted Herceptin. It is a quality of life thing. The risk of fainting is less scary to me than a miserable life of side effects for a drug I simply don't feel I need.
I will simply have to tell the doctor no again. Even my primary doc yesterday is trying to get me to take thyroid, cholesterol (which measures higher when on carbamazepine) I won't take statins after watching my mother endure crippling muscle spasms and cramps and since Herceptin also can cause that, not willing to add a second drug. I need the doctors to stop simply assuming a non compliant patient who is trying to get her way. I am a terminal diagnosis who is trying to make sure my life goes as smoothly as possible so I can be independent. This is my quality of life, once something tips the balance, I will no longer do that. Not going to try this drug or that drug to fix a problem that overall I do not have unless my brain actually is swollen or growing mets. It has been NED since 2018. Just going to have to make sure to take food with me for the walk since it does not take long to burn off my meals and of course drink lots of water. I will also stick up for my right to refuse the drugs. I will also keep up my walking as much as possible and be careful of overheating etc. Eg if the summer day is really hot and humid, I would definitely only take the bus and save walking for early in the morning and use an umbrella to avoid sun. Don't really love hats over a wig. I know how to keep cool. Make sure I have eaten more than cereal when I go for a longer walk.
I just wish more people would actually hear me and not assume that I am not correct, or that I am not simply being difficult. I have had dose increases and experienced the side effects I described. I do give a pass to my SIL as she is the one who helps me if I do pass out and she does come to appointments from time to time. It's the doctors who I am really getting irritated with.
Sorry for the rant, just had to get that off my chest. You guys have always listened. I am stubborn and have to look out for me and put my foot down when it comes to upsetting my qol.
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Mae, I am sorry that the swallowing has not improved for you. I hope they find a workable solution soon or that it resolves if it is the result of damaged nerves from you craniotomy and rads. You are my inspiration for keeping going during adversity, you just keep plugging away.
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Thanks Mara, I’m honored by your compliments. Fortunately, continuing despite challenges is just in my nature but I’ll admit this setback is definitely trying my patience. It’s times like this when the support from everyone here has the most meaningful impact, I’m forever grateful.
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well . You are loved! ♥️
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Mara,
I do not think you are being stubborn when you refuse more meds. Unfortunately, that’s pretty much all doctors know to do, unless you are lucky enough to find one interested in truly getting to the bottom of a problem or incident like yours. I predict that many years from now they will talk about how many people died from being over medicated (like when they use to bleed people—they thought at the time it was the right thing to do). You know your body better than anyone else, so stick to your guns!
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BooBoo, Moomala~ hope you’re both. Feeling better. Good to see you both !
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Hey all.
Mara- Stick to your guns. My PCP is one of those docs that pills are the answer to everything. And I am one of those patients that only wants to take what is absolutely necessary. I have been going to my PCP for over 20 years. He will ask " So are you taking ___ that we talked about last visit". And when I say No, he just shakes his head. We have had some strong words to each other over the years, but I stick to my guns. I know what is important and what can be skipped. We are the ones that have to live with the side effects, etc of the meds, not the docs.
Mae- Thinking of you. Hate that you have to deal with all this. Relax for the next 2 weeks and hope that you can report back to your doc then that things are better.
Kate- Wow. 41 months with liver mets. Hope I can say the same---28 for me.
Moomala- Sorry the AD caused more issues. Hence the above post about med side effects. Good grief.
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hello dear friends! Just a quick check in here - still waiting on scan results. Hoping MO calls today...he said results will be in quickly and said “same day” and now it’s two days later so I’m imaging either he’s swamped or the results are confusing and he’s maybe getting other colleagues opinions. I’m at work right now poking people with needles and am hoping he doesn’t call while I’m in with patients...will report ASAP!!! You’re my homies!!! 💕❤️💕❤️💕❤️🕺🏽💕❤️💕❤️🕺🏽💕❤️💕
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Hi All,
Mara & Runor, made me properly laugh with the game show Motorhome - there’s a pic in my head now which won’t be easy to remove - and thanks to Mae for the advice whilst also dealing with all your stuff. Motorhome def wins!
Re refusing meds I normally would just do what I’m told.....however have currently refused to take a statin for high cholesterol ( caused mainly by genetics and Letrozole not my diet!) might just have to capitulate but not without a fight! And they will have to modify dosage and type to suit me. Ciaci knows this too!
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Philly hope you got results... and wish I could have some acupuncture with you! The hot sauna at my gym will have to do. In fairness it does help the joint pain!
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Well, in all the talks about whether I am seizing or fainting, that debate really does not matter or change my attitude. The fact is, even if they were seizures, I still will not knowing take something that will cause many more problems than it would potentially solve. My mind is closed on the matter and that is what I will say at the next neuro onc appoint. I will be polite but quite firm about. They don't have to live in my body.
If I do find anymore attitude from the doctors, MO, PCP or neuro onc, I will call them on it and remind them that as the patient, I hear their arguments for a certain treatment, but still have the right to choose what I will and won't do. Until then, I will keep growing stronger. Today was a long day on poor sleep but I still was able to walk to and from the hospital even after infusion. 40 mins or so each way, eat like a racehorse and not even nap. Ate a lot of chocolate though. All this on maybe 4 hours of light sleep. It amazes me sometimes how much I am pushing. I won't let anything be added that takes this away from me.
Philly, I agree that I hope you either get or already results as well. Acupuncture sounds wonderful.
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hi Karen!
Awww I would love to give everyone on here acupuncture (who wants it!). It makes me feel good to help other people!
I love the hot tub and sauna at my gym! And guess what?! Saunas are great for increasing RBCs and WBCs! So keep at it!
Love,
Philly
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Man.... Two weeks and my scans still aren't read. Apparently due to volume and radiology reading backlog. NP will call when they are done, hopefully in another week. Waiting for my pills now and then heading to the pool and SAUNA on my way home.
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Sondra,
I'm sure the delay is frustrating for you. I am thinking good thoughts on your behalf.
I went to the pool yesterday for aqua fit, and then sat myself in the sauna for 15 minutes. Sure felt good, whether it helps me or not. So -- enjoy!
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I could handle a. Cleansing sauna. don’t like the fact that you don’t have your results yet That’s so not cool! They need to do a better job on that. I wonder if the doctor himself would have to wait as long , if he or she were the patient?
Sooo windy here today I don’t even want to go outside. Neither do the dogs. You know it’s bad then. good to see all of you ladies. Hugs to all!
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Sondra, I am so sorry your results are taking so long, waiting is very stressful.
I don't especially want to go outside either. It is quite sunny but cold with extra snow from last night. I am going to make myself go because I am bored silly and just wear a layer of fleece to beef it up. Need to eat a hearty lunch before I go though. Will need all the strength I have. Though it is nice my busy week of appointments is finished, I have noticed that I need to find other things to do. I am not yet comfortable with getting a job until all the fainting/seizing, not sure what it is subsides or occurs less often.
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hi friends!
Micmel I know...they def wouldn’t have to wait... here’s what I know so far..
So my dad got impatient and called the nurse to find out what's happening with Petscan results. Apparently my MO has been in meetings non-stop plus a a full schedule of patients. She was able to tell my dad that my MO said at this time we are going to keep the current treatment going yay!! But she said she couldn't go into the details of anything. I am happy with this news! My MO should be hopefully calling me sometime soon, and give me more details when he can come up for some air.
I am taking this as good news and clearly there is nothing urgent. I am thrilled to be staying on the same treatment plan
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