My Husband, My Life, My Love, My Family, My Cancer
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Oh AJ, that’s awful. I hope your rib doesn’t ruin too much of your vacation and that you are able to heal quick.
I don’t usually suffer from scanxiety. I always feel that knowledge of what’s going on internally can better help me fight this bastard. I’d rather know. But this time around…I’m having waves of anxiety. I want to know NOW. I want to rip the band aid off. I think many things are contributing to these feelings but I’m very overwhelmed today and my scans aren’t until Thursday/Friday. I don’t discuss my results until next Tuesday. I’m on a steroid which is helping my pain tremendously but making me wired, I’m not sleeping well due to steroids and a cold, I’m expecting bad scan news, I’m dreading leaving my research oncologist’s practice and getting a new MO, I’m dreading having to start IV chemo and I feel bad that my healthcare needs are likely going to ruin my husband’s travel plans this month. I say my husband’s travel plans because my heart just isn’t into travel anymore but he has given up so much for me already that I’m trying to go through the motions for his sake - and that’s not a good feeling either. I feel so guilty. I’m just so tired of feeling lousy every single day. It seems like I fix one problem and another side effect or pain or whatever pops up. And I know that others have it so much worse but I’m getting tired of the fight. Maybe tomorrow will be better. Just in the time it took to type this, my wave of anxiety is dissipating but I know another wave will come. It’s been off and on all day. On a positive note, I made an appointment with a breast cancer specialist later this month. If my scans come back stable, I can always cancel. I will use her eventually so the effort of record transfer won’t be wasted. This doctor is far enough away that I will probably use her as a second opinion and resume treatment with my local generalist MO. Thanks for listening. I needed to unload to someone other then my poor husband.2 -
Aj, ouch! A broken or cracked rib is super painful. I wish you rapid healing.
Had my scans this morning. CT showed some of what I KNEW was going on. Impression 1: New focal parenchymal changes in the right upper lobe are consistent with inflammatory change although neoplasm is not excluded. 2: Wall thickening in the mid esophagus with proximal air-filled dilated esophagus, possibly related to postradiation change. (Didn't have radiation there.)
Message from my MO said that she did not recommend any changes to treatment at this time. Will talk to her at my next appointment on Monday. I do have a referral for a swallowing eval. I'll call on that tomorrow.
Nice to know I'm not imagining things. We know our own bodies, right?
Has anyone had experience with the lung thing?
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Good Evening all of you Sweet MBC Sisters. Reading each one of your posts and seeing who’s who is a challenge to a Newbie on this thread,
Goldensr….Your experience sounds identical regarding your physical symptoms and pain I had right around the time I was first diagnose with bone Mets his past January. I did not go to the hospital, but I will never forget how sick I felt. I ha severe cramps and vomiting with some viral gastroenteritis, continuous nausea, and could not eat a thing for days. I lost 10 lbs in 2 weeks. My Onc took me off the Verzenio for a week while I was sick 🤒. I’m glad you are feeling better at home in your own bed.
AJ……Ouch! Rib fractures are very painful and keep you from sleeping on your side. I cracked 5 ribs in a fall on my side on the while Very also. But Snorkeling, not so much😊. Rest and do some safer moving.painful. Keep moving though. A little less Snorkeling .
😉Cookie54… hey there Jersey Girl💕
Mel, and all you great MBC girls…… Greetings to everyone here. Enjoy the rest of your evening with peace, comfort and rest ….. I will because I spent the day at the Cancer Center visiting my onc for follow up and labs. Long day, and long ride home. (Hour and 1/2). Oh my sacrum and tailbone hurt today.
💕 Barb
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RK~I understand completely what you are saying about the waves scanxiety. I’m so sorry that you’re anticipating bad scans. I do believe we do know our own bodies. Sometimes though our minds run away with us. I am hoping you can relax your mind a little knowing that you want to know what’s going on. I realized along time ago. Life is waiting. Plain and simple. Hang in there. And we’ll be in your pocket Thursday for your scans
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Shana~my bone Mets are on my tail bone and sacrum s3 I think. Ever so painful to sit for a day. I can totally feel for you on that. Oh my yes the pain is unbearable to the point of you have to lay down. I bought myself a special shaped pillow and I take it with me just in case I have to sit in a hard place. It’s so not enjoyable at all. Im sorry you deal with pain there too. Don’t worry about getting everyone straight and stress over it. You’re not a newbie anymore. It will all just come. Hugs to you!
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AJ, I am sorry to hear about your ribs, yes that is very painful so hope this post finds you having taken painkillers with less pain.
Goldens, I am hoping you are also doing better as well, nothing worse than stomach ailments to make you miserable, that is for sure. In your pocket sending support.
I have decluttered and removed a lot of ethernet connections and my router, just using the modem. It still wants to stop every once in a while but much more stable now. Not too worried at this point. Gives me a chance to clear out the TV stand area. Fell asleep much of the afternoon after all was said and done. Decided to stop worrying about stuff and just go along with it more today.
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Rk, I'm glad you came here to vent, and I have to say that reading your post helped me in some way, does that make sense? When you said, "I’m just so tired of feeling lousy every single day. It seems like I fix one problem and another side effect or pain or whatever pops up" I said, out loud, YEEEEESSS!! I still can't wrap my head around the reality that I'm not going to get better. Thinking of you and sending big time hugs.
Sunshine, good to hear that your doctor isn't recommending treatment changes, and I hope you get that esophagus eval very soon. I haven't had that specific lung result in a scan, I have small ground glass nodules that seem to come and go.
Aj, what a way to crack a rib, but ouch! Pain is the worst, hope it heals quickly for you.
Goldens, very glad to hear you are finally home. Hope you can rest, you've been through a lot lately.
Hello to the M squared crew (love this!) and everyone else.
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RK2020
You are in the worst part of the process - wanting to know, but terrified of knowing. We have all been there and will be again and we understand. We're here for you as well as in your pocket (try to wear something with big pockets - there are a lot of us).
Do you have any anti-anxiety meds? I have an Alprazolam prescription and I find that even taking .25 mg is helpful in the days before a scan. I also force myself to get up and move. Walking outside works best for me because of the distractions, but when that's not possible, I have a stationary bike with a platform to hold a kindle where I read thrillers and mysteries while I pedal. Enough to distract the part of my brain that wants to sink into the anxiety pit.
Whatever you choose, remember that you only have to get through a few days of this and you life will still be on the other side.
Lots of hugs.
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Sunshine, hope today finds you in less pain from your rib.
Goldens, Pat and all others ill or struggling, I am in your pocket sending my thoughts and love your way always.
For me, trying to set more of a schedule for myself so I use my time efficiently. I plan to walk post meals, even in the heat coming fo the next couple of days to acclimate to it enough I can walk to the bus or walk for a half hour. Doing laundry first, then breakfast brought out some beef hotdogs, will grind those up to add to eggs or a bean meal, need to start poaching eggs to add to beans and rice meals as well. Still loving the chicken broth powder that I use as seasoning instead, really good stuff. I don't mind sweat, just need a headband to keep out of my eyes.
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rk I totally undestand how you are feeling.. I feel I am restricting my husbands life. We had planned to travel when we retired. He is fit, apart from an occasional back pain, I ,on the otherhand, cannot summon up any enthusaism to travel other than to see our family. I hate steroids- the only thing they seem to do to me is keep me wide awake , so then I feel wired and tired. I seem to take one lot of medication to treat the side effects of the previous meds ,it is emotionally and physically draining. Be kind kind to yourself. I hope you are feeling better today.
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Hello Kitty!!! Nice to see you darling. Now I can have a face with your name. Who was in the picture with you? Thanks so much for sharing. Hope you’re feeling better. Thinking of you
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I feel the same way about my DH. He’s fit as a fiddle and loves to do things. I cannot do much in the way of travel. Even short trips. Because of my spine. I feel like I am a burden because he really does take care of me. Then I feel guilty because I can’t be what he wants me to be anymore. It’s very upsetting. Cancer just plain sucks. It ruins lives. I have to take it day by day or I’ll loose my shit.
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Mara~love the pretty avatar just like you ! ☺️
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Well, internet is out again, thank goodness for mobile data, may have to look into another company at this point, interestingly I am not overly upset about, must have accepted it which is a win for me. Usually I'd be crying frustration out.
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Good morning everyone, WOW, I am so confused and have so many questions about my new experience with MBC. 😟 I had my monthly follow up and shots yesterday. I love my Hemotologist Oncologist. I read his After visit Notes in My Chart and I have no idea what the below information means. I’m Overwhelmed with the amount of research I need to do so I can understand these summaries. He scheduled an MRI for me because I mentioned I had pain in my sacrum and tailbone from sitting too long on a barstool or anywhere. Now another scan 😥 I’m so fearful he thinks there’s more progression. He also mentioned possibly treating with radiation..
GTC Liquid biopsy evidence of mutations
KMT2
ATM
DNMT3A
PIK3CA
IGLL5 genes
Barb💕0 -
Thank you everyone for the kind words. I’m definitely feeling better today and don’t feel so alone either. Based on yesterday’s craziness, I skipped the steroid and just took ibuprofen in the evening so that my pain didn’t keep me awake at night. I’m so torn about taking the steroid because it does such an amazing job on my pain and gives me so much more increased mobility. With the steroid, I feel like as soon as my cold goes away, I can start Aquasize class again. And I really need to get some gentle activity.
Shanagirl - PIK3CA mutation means that you can put Piqray in your toolbox. There are also a few other PIK3 drugs in clinical trials. The ATM mutation means that you are at a higher risk of developing breast cancer over your lifetime. Well…that cats out of the bag. Not sure about the others.
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After a couple of hours on the phone with my internet provider, they only wanted me to upgrade my modem which would still be over what I could afford. Told them to hold off, don't cancel anything and I would either get it going myself or find another company. I reset again and tightened the cable connection to the modem, started working again. I will get pliers if the internet craps out again. I think I need to earn extra money, set it aside in case I have to switch companies. I must say, I was frustrated because tech support had to send me to customer care and they wanted to send me back to tech support if I was getting a new modem. As long as it keeps working, I will be happy. Might also tighten cable with some pliers as well so when modem is moved for dusting, it does not loosen up the connection.
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Rk2020 …. Thanks for the bit of info. I knew a little about the PIK3CA, and that it can be resistant to some treatments, I think. And now I know I’m learning from you about the ATM. ‘M going to research more later. I wanted to get some flowers planted. My Cancer Antigen CA27 test result just came in on my chart. I’m relieved to see it coming down at each visit to the lab. I was 84 - 65 - 61, and today 59. So that must be a sign that treatment is working for MBC?….
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RK2020 - I can really empathize and I so appreciate your honesty. I always thought I dealt with scanxiety pretty well but lately I find myself checking my email anxiously for notifications the report has posted to the portal. It seems like with every little pain or problem I am talking myself off the ledge about a progression and running through the possibilities of what it could be. What you said about feeling so tired of feeling lousy every day really resonated. I'm not married, but I am often angry that cancer seems to have taken me out at the knees at the very point I felt I was achieving goals professionally and personally that I had been working towards. It's been a process trying to pick myself up from that and figure out how to redirect those goals and dreams and not let my emotions get sucked into the mire. I'm glad you are feeling better.
Mara - I hope your internet improves. I'm not super savvy with technology but when it's not working it drives me nuts.
Candy-678 - I think I may have to acquit the woodpecker. While there is definite evidence that's what set it off, I couldn't find a body. Perhaps it escaped after the sparks started. I'll be darned if there wasn't another one pecking on that same pole near the conductors again this morning.
In pockets for all who need it.
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I fixed the internet myself, took a pair of pliers and tried putting the coax tighter and for now it is working. Celebrated with Taco Bell which normally does not cause problems but now having lower body issues. Thankfully still have some loperamide so that is good. I also am not sick per se so glad about that so I know it is not food poisoning so that is a positive, will just slow things down and all will be well I think.
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Internet problems suck…..paying for it is even worse. Television is really expensive. Almost like a car payment.
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@Micmel, that is my middle daughter Nicole, she lives on the other side of the country, it's the first time I've seen her in 3 yrs, it was a surprise visit, it was so great
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Mel, yes problems suck for sure. I think the issue was that the actual connector is moving around as it did drop this evening. I went through the routine, reset it but did notice the problem, may look into some electrical tape to minimize movement or just leave it and fix it. Planning to stop talking about interwebs for now as this was too much of my posting.
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Mara I am continually impressed by your resilience, happy to hear you fixed your internet issues!
Mel yea your not kidding about the car payment! I broke up with my cable carrier last year and went to youtube TV for $65 a month, plus my Netflix and Paramount Plus subscription. It's still way less and so far it's been working out well.
Hey Shanagirl Glad to hear your numbers are coming down, yes I take that as a good sign that treatment is working!.Your heading in the right direction! Oh the research I probably have a honorary Ph D by now lol. I have been researching for years. Sometimes when something new pops up with me, I'm like great now more stuff to research! I now know why ignorance is bliss, I wish that was me but it's not.
RK2020 So glad you're feeling a bit better today. You speak the truth, this disease is sooooo tiring sometimes. I think many of us struggle with the same thoughts as you do. Like you I am so thankful that there is always someone here to listen and understand.
Well let's see if I sleep any better tonight, plan on turning down the AC and maybe that will help. I really don't want to depend on sleep aids too much, fingers crossed.
Good night all, may all the night owls have a restful night.
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It’s 2:30 am. Been up for an hour and a half. I don’t make a good night owl. Tick tok…
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rk2020, Up all night, too. Catching up on everyone's postings. I so wish there was a way to quiet the mental aspects of this friggin disease. Having used solumedrol IV for MS in the past, I so recall the steroid effects. The ying and yang mentally, but also the need to scrub floors and walls and…got a clean house out of it.
For those of you that are struggling I wish to send my support and wishes for a kinder day tomorrow.
My DH rec'd his pet scan, it's suggestive of lymphoma or CLL. He was diagnosed with CLL in January and then I was diagnosed with MBC in March. He will see his MO/HO in two weeks to see if it's still considered CLL versus lymphoma. Hopefully it stays with the CLL diagnosis and no treatment, yet.
Reading how patient and loving everyone's caregiver is, I understand the need to protect them from overload. But I remember a dear gentleman that said that as his wife had advanced in cancer, the more he grew to love her. When she passed, he said he didn't know what he was going to do with all that love. I suspect that is how your loved ones feel, too.
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rk2020 Oh no ,gosh I hope you went back to bed. I woke up at 3 but I usually force myself to stay in bed and try to get back to sleep. However you're dealing with a totally different situation with the steroids. Why do they have to have the downside…why can't they just relieve pain ,inflammation etc and be done! All so annoying, hope you have a decent day today.
irishlove I'm sorry that you have so much on your plate, it just stinks! Fingers crossed that it remains CLL as that can remain quiet for quite sometime as you know. Hugs. I love your comment regarding the gentleman with all the left over love he had when his wife passed. What a beautiful perspective he had. I hope that her love sustained him for many many years…beautiful thought. I hope you also get some rest today!
Looking forward to the weekend, my daughter is coming home for my mil 85th birthday party on Saturday. I can't wait until August she will be moving back to NJ, she moved to Va Beach 2 years ago for work. Her and her boyfriend really enjoy living by the beach but they miss their family and friends back this way.
Playing catch up here today, cleaning and errands etc. Hope to go boating tomorrow and enjoy the fresh air!
Oh Canadian friends, we are actually seeing remnants of the wildfires. I hope you and your families are safe and anyone with compromised breathing is hanging in there. Hugs.
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Guess I forgot to post comment so will try again. For those not sleeping whether it is steroids or plain insomnia for another reason, I found that even while on high dose steroids before craniotomy, during WBR etc, best way I found for sleep was to listen to a sleep talkdown then an 8 hour rain. You can get some rest that way. 4-7-8 breathing if possible helps too, breathe in to count of 4, hold for count of 7 and forcibly exhale through lips. Shorten the counts if the first is too much, all will help. Sometimes I take small breaths in and exhale for longer. That helps relax me. It helped me immensely post craniotomy when I was in a room with 6 other people and nurses. I could go back to sleep after they kept checking my mental status even on all those steroids.
Breakfast was weird but good, had the rest of the boxed stuffing, was a bit dry so added some chcken seasoning mixed in water with a little cheese, did not add anything else except salt, microwaved 60 seconds and it was filling. Laundry going on, feeling lazy so taking day off, been stressed for the past couple days, read why on earlier posts, suffice to say the major problem is over. If DB asks if I want to go out, I will go though. Not ready to deal with heat yet nor do I need to spend extra money on anything at this point. Tired of eggs so will give them to DB or dispose, sticking with beans, meat, spinach, rice, noodles etc and make different things and of course peanut butter. I also like the hot dogs or chicken dogs acting as an extra protein beyond the beef. Monthly bills paid so things are good as well. Put my rent and certain bills to auto pay on the 1st each month, makes life easier.
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