My Husband, My Life, My Love, My Family, My Cancer
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Boo - I have to say that the last time I checked in and saw you were going for scans at your new MO I had a gut feeling they were going to be surprising in some way. You've done a lot since you went off active treatment - moving to another state and traveling and visiting friends and family - and thats been over months. Even though you have weight loss and fatigue (which sarcoidosis can cause) have you had any other signs of end of life? This is most extraordinary, and I hope you can work with your new MO to keep on truckin'!
Moth - I hope that your team is right that the new lesions were before treatment started and you can stick with Trodelvy!
Nothing really new here other than its a 4 day weekend starting tonight and the weather will be fabulous for three of those days at least! Cats are loving life running in and out of the garden and house. Still adjusting to Lynparza but I think we are just about there, don't need much in the way of the anti-nausea pills so long as I watch portion sizes/frequency and don't overeat. My goal for this long weekend is to go for my first pool swim in 8 months - the new potential pool has a twice a week masters club that I would like to eventually join. Not to train to race, but to do coached swims with others and meet new people.
Hello to all!
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Hi Sondra, nice to see you. Enjoy your holiday. We are the same though stores are open Saturday and Monday. Definitely not getting groceries on Saturday as that is the busiest day of the year.
I tried out canned potatoes to add to my breakfast combo. I drained them and sprayed a frypan with olive oil. It took forever to get a somewhat browned appearance. I broke them up and after they were done and cooled, put them in the fridge for use with other meals. I will simply chop up a cooked hash brown patty and add it as I wish for the potato component. Cheaper option than the canned potatoes and take less time. Breakfast today was some carrots, spinach, mushrooms chopped up together along with a small clove of garlic. 1/4 cup corn, 1/4 cup pinto, 1/4 cup chick peas with the chopped veggies, fried up with a spoonful of the previous cooked potatoes. Seasoned with fries seasoning, my mix of all my seasonings together too. A spoonful of mayo held it all together. Of course it was delicious. I am liking mixing up the seasoning as well. I will need to resume rinsing my mouth with baking soda as the garlic is causing some mouth sores but I can live with that. No digestive issues from the garlic yet. Tonights meal will likely be more mexican. We will see.
In case anyone wonders what the reasoning is to chop up most veggies in the chopper is so I can add items I don't particularly enjoy and have them in smaller pieces. Still get the nutrition without the taste or texture overpowering the meal.
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Hi All: I have been away for about a week at least. My DH, who has MS, lost his balance while taking his evening meds. He toppled sideways and hit his ribs on the side of the tub. He broke two ribs and developed a closed pneumothorax. I have been back and forth, back and forth to visit. He MIGH get released today. Waiting on the call. I had an extra grab bar put in the bathub/shower, bought a bed wedge for the bed, have a walker on loan from the Red Cross. He is feeling well enough to whine about the hospital food and the noisy patient in the next bed. While I was worried, a few days/nights alone was okay. I joked that I controlled the remote. But enough is enough. I miss him
booboo: that seems like exceptionally favourable news. I hope it portends for months to come
moth" &^%(^ I am so very sorry the last scans were bad. I hope getting back on a treatment line improves things.
Loved all the pics of praying mantis, puppies, goldens
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Elderberry- so sorry to hear of your husband's fall. I hope he heals quickly.
Runor- you should write a book! I love to read your posts laughing along and picturing your written words. That's a special gift.
Booboo- lots of questions to unanswered issues. You are a special lady with amazing faith.
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To All: my DH is being sprung. Will our cat remember him? At least I didn't spoil him too much and have to undo it all.
Best wishes to all. I'll be popping in soon. I am finally showing HER2+. Now to get rid of the mysterious ILC.
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Elderberry, so sorry to hear about your husband's fall, glad he is sprung and you have things at home to keep him safer and comfortable.
Well, my good day is over. I was talking to my phone friend who started as a wellness call. She asked if we could talk more, I said yes. We have normally been pretty friendly but I am starting to see why she has trouble with other people. We were talking, I told her how I was happy that I get bonus money of 0.5% which means 10 cents just for depositing to my saving goal of renters insurance next year. I was happy that I would get a little extra. She totally shit all over that and said Whoo 10 cents, woopty doo. Made me feel like shit. She also commented that I had groceries delivered so 10 cents is not a big deal. I did have stuff delivered as I needed quite a bit. I cut off the conversation and told her to have a good Easter. I get that it is not so exciting but for a person who is on such a low income, every extra cent helps. I found it hurtful and I think I will just stop saying anything. Just a quick rundown of my day and leave it at that, turn it back into a wellness check. I don't have anyone I can freely talk to about stuff going on in my life. I have you guys but you all are dealing with other stuff. I am just going to keep quiet going forward. My life is so quiet that the stuff I do is not of interest to anyone, even DB and SIL are not interested. Their interest is just to make sure I am not sick.
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Rosie, thank you. I feel like I am hitting the lottery.
Runor, so good to see you here. Love the story about your mom. What a lady for being in her 80s. Good for her. I'm glad your hens started laying again.
Mae, it was nothing about cancer. I was curious how your experience was selling your house and which company you went with. If I'm not mistaken, you had an Internet buyer. You can try to private message me if you don't want to answer here.
Elderberry, I'm sorry about your husband. I'm so glad he got to come home.
Mara, I'm sorry about how rude your phone friend was. How is that supportive? I use an app called Ibotta. They sometimes give you 10 cents for just having a receipt. You're darn right I take a picture of my receipt and get my 10 cents. In the end, it can really add up. Phewy to them for making you feel bad.
I'm exhausted today. I'm sorry if I missed anybody.
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elderberry, I so sorry your DH fell! Glad he’s getting sprung and coming home.
Mara, people can just be so insensitive sometimes. I have a ziplock baggy with about $8 worth of dimes and you can bet I consider them “assets”. Your postings of exercise and eats are interesting to me!
Friends, I have a question. I am scheduled for a CT of the abdomen and brain MRI next week at MD Anderson. I have had these at a local scan center and not concerned about the process (the results yes). However, I am having my first bone scan ever. How do those go? I know I have Mets in my bones but they have not given me problems.
I do have brain Mets and have been feeling a little “swimmy” in the head since Sunday. I can still function and work just fin, walk, and everything. It is literally my only “issue” at the moment, surprisingly. I am concerned but not overly. The scans will be what they will be and we will go from there.
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Thank you KBL I just get sick and tired of people in my real life being so dismissive of me and what I do. Granted, I don't go out a lot. Most of what I do is indoors and I have little in common with the phone friend or even my remaining family who is not at all interested in what I do. I no sooner start a conversation than the subject gets changed immediately but since they would actually help if I asked, and have been a huge help to me, I can forgive them more. This woman was just a wellness check but has really been hurtful to me on several occasions. I will keep the calls short, make sure she had a good day and say little else or if I did something, keep it brief.
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Mara, so sorry that person was so dismissive of your money saving endeavours, I don't do surveys like you but I always shop the half price specials, have a jar with small coins and an app on my phone that locks in the cheapest fuel price in my area for 11 days so I can save that way as well, I love reading about your days and your cooking experiments, I should do the same as I really don't like the taste of most vegetables.
I've been reading and cheering the good news and commiserating with all of us with not so good news. I'm still in a holding pattern, just on faslodex for now while I wait for news from the surgeon to see if the infection has cleared, really concerned because my tumor markers, which are really accurate for me jumped 30 points in 4 weeks and I've got a sore spot and what feels like a swollen lymph node behind my right ear. The only bright spot is having Finn for a couple of days, he's 7 now and he'll come and sit next to me, kiss me on the cheek and say I love you Nanna and just snuggle for a few mins before asking me to come and play cars with him, I'd be lost without him, he keeps me going. I hope you all have a lovely long weekend, take good care of yourselves, love from Kitty.
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Mara - I'm sorry your phone friend was rude to you. People who never had to count their pennies to get by just don't understand.
Elderberry- sorry your hubby fell and hurt himself, but glad he's home again. Broken ribs suck.
Kikomoon- no info for you; I've never had a bone scan either. But, I'm ready to hang out in your pocket for scans.
Runor! You're back! I didn't realize people are still having problems with slow loading pages. The only one that still seems slow to me is the one with all the pictures. The family I buy my eggs from said their hens were on a break for a few months in the fall - she jokingly called it hen-opause. Lol. They are back to work though, and I try to get all my eggs from them.
Illimae - wow! you are really close to being out of there! You must be really excited to finally be going ahead with your plans to move to the cabin.
Kittykat - good to hear from you. How great that you get to spend time with Finn and that he still has a few snuggles in him.
Here, the kitchen reno is moving forward. Old cabinets/appliances were torn out and hauled off yesterday. There was no drywall behind the lower cabinets ::smh:: so, dh and I hung drywall today. New cabinets will be installed tomorrow. The NEW painter will start on them Saturday, and our counter top should still go in on schedule. I had to delay my appliance delivery by a week and a half, but we can work with that.
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Kitty, hope you get news soon but I am so glad to hear you have Finn as I can hear how happy he makes you.
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Kikomoon, I've had a few bone scans, but it's been a long time. I do know that they inject something, and then it's a long wait before you have it to let the stuff do it's thing. I think I've even gone home in between the injection and the scan. Other than that, I don't remember how long the actual scan takes, but it's pretty much like other scans.
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Kikomoon - bone scan was the more claustrophobic scan I had, but I think its because I wasn't ready for it! First they will inject the radiation tracer, then its a 2 hour wait or so while it makes its way around your body. I went for a walk in a park to get out of the hospital. The scan itself you lay on a pretty deep scan bed and its like a giant Xerox machine. A large plate will come down REALLY close to your face - like you think it won't stop (it does...like an inch or two above your nose) and then it slowly moves down your body over the next 40 minutes or so.
Its really quite easy,but the plate in face thing was disturbing until it cleared my sightline. I guess another similarity is if you have seen the film Alien and when they put the crew member in a scanning pod to xray what was inside him - its quite similar in a way!
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Hi All, just managed to find my threads again after the big crash! Not read through the hundreds of posts so I'll be well behind. Spent a coupleof nights this week in hospital after a big pain event. They fully scanned me and for the first time I had an MRI….shocker…the CT only showed a little progression in the lining of my lungs. The MRI showed extensive bone mets in my spine, a spot behind my colon, a 'mass' in my remaining breast and spots in my peritoneum.😱.
So another change of treatment next week to Vinorelabine/ Navarin. Not too confident in this drug as it's old and seems to have been 'relegated' to late stage treatment. Am I running out of options now?
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Welcome back to our friends who have been away! It’s bad enough that our lives are messed up w/MBC - but messing up with this site was just too much. Proves how much our lives are intertwined. And I still don’t like the new format.
Mara - I so admire you for what you do while living on a limited income!
Wishing all a blessed Passover and Easter!
Today is our granddaughter’s 5th birthday! She’s having a Frozen theme party at lunchtime for a few girlfriends and then family will gather to celebrate for dinner.
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Karen, so good to see you again here. I have missed your posts.
Goldens, thank you for your comment. I think I really am quite good at creating a small income alongside my disability. I do have some money in the bank but my goal is not to use it up as it is for emergencies. I do get excited for everything I can make whether it is 1 cent up to dollars. It does pay for groceries and my savings account for my insurance next year. I can also stretch groceries in meaningful ways. Really helps.
I am not doing much today. Decided last night that it is too late for me to do anything about the phone friend. I was dwelling on her a lot and feeling angry, but angry will not make me feel better. I also won't be talking to her until Tuesday. If she does something during the call, I need to say something at the time, not stew about it and discuss it days later. I also need to let go of when I think people have offended me. Too late after the fact, just need to do the little things that make me happy like laundry, different meals and cleaning and of course my surveys and little mobile games for pennies. My life is not complicated at the moment and I should be grateful when I think of all you go through and the rest of the world as well.
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Reading along here. Wow, lots of posts. Good. I check in a couple times a day and it is usually quiet. Then after I stop being online for the evening/night you all come out. I cannot remember all posts for me to comment on and going back a page is a pain. Plus, you cannot scroll back as you type a post. I wish they would add that as they are redoing the site. Would be nice to scroll back as a person is typing a response.
Kikomoon- I JUST had a bone scan. It is like Sondra said. They started an IV and injected the contrast. Then you are free to move around for 2 hours. They instructed me to drink lots of water in that 2 hours, to help move the contrast and expel the extra thru the kidneys. I stayed in the hospital setting, but went to the cafeteria and walked around. Then they put you on a scan table (I stayed dressed, minus anything in pockets- keys or phone). Then a plate slowly passes over your body. Yes, the plate comes INCHES away from your face and that is claustrophobic. I closed my eyes. But after it moves past your face all is ok. The scan took 30 minutes. Then all done. Drink more thru the day to clear the contrast. Pocket duty for you for your CT, bone scan, and MRI.
Mara- Sorry your phone friend was rude. Yes, any amount of money saved is good. I talk with my remaining sister every couple of weeks. She has her job, her family, her life. I have medical stuff and my books I read. We run out of things to say to each other. I too think I am boring and don't have much of interest to discuss with people.
Elderberry- Hoping your DH heals quickly. Glad he is coming home. There is no place like home.
Hi Kittykat.
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KBL-I get bones scans regularly so just want to add a little more to what has already been said. Mine last at least an hour-so be prepared for that. Don't wear anything with metal-such as jeans or you will have to remove that item of clothing. I'm so used to them now they don't really bother me. They put on music for me. I close my eyes and usually fall asleep during the longest scan which lasts 30 minutes.
Mara-That wellness check person doesn't really sound like a friend. Do you think you still need nightly calls? Maybe you could suggest you just talk once a week now. It is rough for those of us who are single because we do need to rely on other people, who don't always treat us with loving respect. But I find, the better I am about setting boundaries, the better people treat me. I also journal which helps me discuss things no one else is interested in hearing. It helps me talk things over with myself-LOL. Anyway, you have a lot of friends here who are interested in your life!
Karen-Good to see you back but sorry things have been rough. Hope the next treatment will stop the growth.
BooBoo-I haven't been on Faslodex yet but from what I read it is no big deal-just a hormonal. I guess the shots can hurt but if it gives you more time with good quality of life, why not?
Blessed Ramadan, Passover and Easter to those of us who celebrate.
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Hi All: I have a question for those of you that have liver Mets. I had my every six month check up yesterday and my zometa infusion. I have never had any type of scans before but my liver enzymes were all elevated about ten points above what I normally are at. They are still within normal range but inching towards being over normal range. Just curious how any of you who have liver Mets found out you had it. I’m a constant worrier.
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My tumor markers were rising and so my doctor ordered a CT and a bone scan. Liver mets showed up on the CT scan, and then they were biopsied to confirm they were cancerous.
Actual liver function tests can bounce around a lot. If they are in the normal range, I would not be so worried. But if you are, I'd check in with your doc for reassurance. That's their job.
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Mara, it's hard to let go of mean things people say, it hurts. You're right, it's better to say something when it happens and not dwell on it. Now that the weather is getting nicer and things are opening up, perhaps you can find some groups of people doing activities that you enjoy, like a walking or cooking club. Maybe there is a community garden in your area where you could grow your own produce and meet other people. Just some "food" for thought.
Jan
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Candy and Chicagoan, thank you for your replies. I would check with DB and SIL on how they would feel if I cancelled the service in total if need be. I don't feel I need them but think that DB and SIL feel more comfortable having one. As far as the friend goes, if anything comes up again, I will put a stop to it. I am no longer going to consider myself boring but choose my audience when talking about what I do. Listen more than talk can be good. You guys are always my first stop when talking, whether good or bad. I need to take more of an attitude that what I and everyone else do is not boring, but important and know that when I really have nothing to say, cut off the call altogether. Quality of conversation is much better than quantity I think.
I will include my meal today. Ate the rest of the precooked potatoes with 1/4 cup of pinto beans and 1/4 cup chick peas.Fried up with olive oil on the stove. Added spicier taco seasoning, little bit of wheat bran and liberally sprinkled my mixed seasoning which has italian, steak and onion, parmesan all mixed together. Couple of teaspoons of queso to bind it all. I did feel it, could feel it for a few minutes before my chair workout as well. It was really good.
No plans this weekend, today of course everything is closed, will not shop tomorrow as it will be too busy. Planning to do my chair workout which makes me feel happy and I can also do it while standing. I love Paul Eugene, Mom and I did him before she died and he makes me happy as I said earlier. Other than that, surveys, mobile games for money etc will be done.
Runnergirl, not a liver mets person but just going to hop into your pocket offering support and to take some worry away. Within reason, keep vigilant about changes can be beneficial as long as you can still sleep etc.
Chicagoan, I want you to know that what you have done for me has made me feel so much better. I do take the poles to the park a couple times a week to build up speed and endurance, I will also consider using them if I decide to attempt a longer walk. I really am itching to get back to walking further distances again. I do have a walker that I largely do not need but, could be useful if I wanted to stop for a break and to carry stuff in, we'll see.
Video of Paul Eugene, easy 10 min workout which can be done sitting or standing. He makes me feel happy and sometimes just do him after meals. Sitting sometimes, standing others.
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Mara- not much of a wellness check in person when you get off the phone and feel worse! I'm the type of person that will say something right back. I would cut the calls to once weekly, keep it short and simple and then say adios. Yes people have their own lives but they should still be courteous and interested. I agree about finding other people who have the same interests. (maybe not laundry lol). I enjoy your posts so keep them coming!
I have had bone scans and concur with the other ladies experiences. I usually have to wait 3 hours so I head out for lunch or shopping. I'm told to stay away from babies or pregnant women. When the machine comes close to my face I just close my eyes. I have a pierced set of earrings on the upper ear which I don't remove. With the scan we got one out only. Luckily the other one didn't mess up the scan.
Hi Kittykat . I'm happy for anyone spending time with grandchildren and family.
My dh is working in town Sunday and Monday so tomorrow we will have our son out for the day and friends over for hot brunch. Very tired today as the last few days have been busy with reorganizing, cleaning and shopping in town with a friend. When I first stand up I am all hunched over because of the back pain. I feel so old!
Happy Passover and Happy Easter to all! Thinking of each of you !
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Mara- just read your last post . Ok Paul Eugene makes you happy and sometimes you just do him after meals.!! Maybe that's what we all need! ( wink 😉) lol 😆
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Wow, how did I miss so many posts? I can't remember all of them, but mara, I'm glad you're OK after that phone call. I don't get some people!
Regarding the bone scan, yes, the machine comes within inches (or millimeters) of your nose. I'm sort of used to it by now, but it's still a bit nerve-wracking. I typically get the nuc med (bone) injection and then the nurse leaves the IV line in place so that I can go get my CT scan without them having to poke me again for the CT contrast. Everyone's happy with that one. The CT tech removes the IV line and we're good to go.
Hi to everyone else. I'm afraid to scroll back or I'll lose everything.
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I haven’t had a bone scan in years. They don’t work for finding my lobular, so they are not on the list. I know I have arthritis, so I don’t need it to tell me. Lol. I am so glad it helps others.
Warning. I made the mistake of putting my phone number in for Lending Tree. Don’t do it. I’ve been blocking phone numbers for an hour. Wow, what a racket. Not even answering. Just way over the top for not needing anything but just checking. Yikes
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Wow, KBL, good to know, but what a pain!
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Runnergirl- They found my liver mets on a CT. My liver enzymes have always been normal (even with an 8cm liver tumor at diagnosis) so I cannot gauge my liver mets on my liver enzymes. I did have a liver biopsy when initially found to confirm cancer. We monitor my liver mets with either CT's or MRI's (my MO thinks the MRI of the liver can see the 4 tumors easier to watch measurements and look for growth or shrinkage). You are not getting scans?? That is what I read from your post. So how are they monitoring your liver mets?
Edited--- I re read your post. So you do not have liver mets and you are worried you may??? Liver enzymes can be elevated for many reasons. Some meds can increase liver numbers. Like meds for other things---- cholesterol meds, etc. So having a bump in liver numbers can be anything, not just associated with developing liver mets. Are you having abdomen pain? Or bloating? Or nausea? Weight loss? But, even those symptoms do not mean cancer. I was feeling good when we found my mets, none of those symptoms. But others may have symptoms and then when investigating the issue then find the mets.
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Hello to all. Just wanted to pop in and say hello. I'm still here, I just haven't posted much.
Booboo1 - I am so happy for you. I hope you have a lot of years left with family. My cancer is bone only right now and I have been on Faslodex for about 2 years. I don't have any issues with it. I blame it for thinning my hair and causing some stiffness but in all honesty I think the Verzenio and my ongoing "chemopause" has as much to do with that as anything. The Fasodex/Verzenio combo has been my first line of treatment and (knock on wood) has kept me stable since diagnosis. The only thing I do notice is it makes my pee smell weird. That does fade as I get farther out from the shot. Hope that's not TMI. I consider it an easy treatment as far as side effects go. It is administered as two shots in the butt and they can leave a little lump. Just a heads up on that too. I usually have them administered together by two nurses. After two years it's not as awkward as it used to be :-)
Moth - I am sorry for this news. I hate this disease too. It robs us of so much. You have my empathy and support. I hope the Trodelvy has a chance to get in there and really start working for you.
I have been having a lot of homesickness for extended family in Arizona. My immediate family lives here in Oregon and my folks are older, which is why I stay. I would love to plan a visit but with gas and plane prices going up and my mom dealing with some health issues that's on hold for a bit. I have a younger brother who has decided he's not speaking to me. To explain it all would probably take a really long post. Suffice to say he has been an addict for years. Mostly marijuana, which isn't a big deal unless one smokes as much and as often as he does. I'm not sure about anything else but it can't be ruled out. It has changed his personality over the years and he has chosen it over better decisions for his career and living situations. I had to draw some boundaries with him that he didn't like because his behavior has become escalated, unpredictable and paranoid. Apparently he doesn't want to speak to me ever again. Not sure if this is going to be a lasting thing or another change down the road. Time will tell. It's been really heartbreaking and emotionally exhausting so I have just been focusing on work and helping my folks with their medical stuff. All else with my cancer remains stable so that's good. I do my monthly shots and don't have any scans until June when I follow up with my MO.
Hugs to you all. I don't always post but know I am doing my best to keep up and follow along.
--- Elizabeth
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