My Husband, My Life, My Love, My Family, My Cancer
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Mara Your video is definitely an uplifting one for all Canadians. Hopefully all will be sorted out for everyone. Yea a bit annoying about the trash can. Especially because you are so conscientious about your trash and always think of others. Sounds like today you are back to your creative self and busy in the kitchen. Hope is was a worry free day for you.
Hi and hugs to all here.
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Supper is going to be a weird combo but here goes. Just heated up one of the sausage patties, there are only 5 each but it will do, letting it cool first and then will take 1/2 cup peas, a generous amount of cheese and the sausage patty, chop it up and take a little of the frozen spaghetti I heated earlier as well, take the chopped up items and reheat for a min or two. Only using a little of the spaghetti at this time. Only other thing to debate is using 1/2 an english muffin as garlic bread to go along with, have to figure that out. I think it will taste very good, still adding nusalt, just a dash, same with the regular salt and same for any other seasoning. Since I am already using pasta, 1/2 an english muffin with garlic would go well with it. I will post on how it turns out.
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I am watching the livestream of the LBBC conference about MBC. It is held in Philly each year. I wish I could go in-person, but I cannot afford it, and I cannot travel. But it is good to hear the speakers.
I am doing ok. This next week I have my scans (11th) and MO appointment (14th) with labs and Lupron and Xgeva shots. Then, the next week (the 17th) I have my first eye cataract surgery. I pray that my scans are still stable. But we all know that with each scan comes the possibility of progression. I don't FEEL any worse, but we know that doesn't matter.
Thinking of you all as I watch the conference. The speakers say we need to have our "peeps" to lean on. I feel so alone in all of this.
Hope you all are having as good of a weekend as you can.
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@candy-678 I am so sorry you feel so all alone in this. That's what we are all here for…at least it is something. Sending hugs ««XOX»»
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@candy-678 Thanks for checking in. I was thinking of you and trying to remember the timing of your surgeries and scans this month. Must be a little nerve wracking. Let us know if there is any useful info from the LBBC conference.
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Candy - So good to hear from you, and I am in your pocket for those scans! (I get mine on Monday and have started the scanxiety "freak out".) I see the onc on the 12th. I also understand your feelings about being so alone. I did all the initial chemo and radiation alone, and then one day I had gone to the ER for some pain, and the social worker there told me I should always take someone with me to appointments. I don't really have any available family (parents gone, divorced, children far away and little contact, etc.), but I do have a couple of old childhood friends who still live in the same general area. I asked one of them if she would start accompanying me to appointments, and since she was about to retire, she said yes. She's been coming with me now for the last 2 years almost, and I can't tell you what a huge help it is in terms of moral support and a way to distract yourself from some of the scary feelings. While I'm sitting there in the waiting room or whatever, when I would normally start to get scared and worried by myself, she and I can easily talk about our families, the old neighborhood, old friends, current news, etc. It decreases the stress level by amazing amounts, just having that other person to talk to about other things. A couple of times she's had stuff of her own going on, so couldn't come with me, and I sure feel the difference on the occasional times that I do go alone now. If you have any one at all you could take with you, I would highly recommend it. This friend of mine also has neighbors and some other friends who are all single, and they take turns driving and accompanying each other to medical appointments, so it looks like having a friend along is a big help to many. Good luck!
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Intolight- I do feel that you all in Mel's Living Room are here for me, but it is not the same as a "live" person being there in-person with me. Know what I mean? Hugs.
Chicagoan- I am getting a little anxious about it all, but I just want to get it behind me finally. I have known I needed cataract surgery since October, but things have delayed me from getting the surgery until now.
Threetree- I don't have anyone to go with me to appointments. I am ok with that most of the time. I am pretty independent. But it would be nice to have someone around to quell the nerves.
I am getting "nuggets" from the speakers so far. For instance, one speaker mentioned "molecular progression"- progression on a molecular level, before seen on scans. I am going to ask my MO about that if I am stable again. Can they somehow test if the cancer is progressing BEFORE it shows on scans. (We don't do tumor markers with me, as they were not too reliable with me) Also, they mentioned in the conference about the idea of monitoring for brain mets BEFORE you show symptoms. Right now, they only scan the brain when there are symptoms. But the speaker said if the body is stable, should we be scanning the brain to see if something is beginning there? So some nuggets to ask my MO this week.
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@candy-678 My MO does liquid biopsies to hopefully catch progressions before they show on scans. I’m not sure if there are other ways to test for molecular progressions, there might be. You might ask about liquid biopsies. I know some cancer centers like them and some do not. In your pockets for your scans, cataracts and conversations with MO.
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@candy-678 Wow, your post is timely. The reason I am changing meds is because of the information I received at the molecular level we got from my biopsy. It was this report that identified my ESRI mutation. Faslodex is known to not work with this mutation, and since my tumor markers are rising, I need a change. My MO recommended Erserdu because it works alone without an anti-hormone blocker. And since I have been on both Femara and Faslodex, we know they won't work anymore. My scans showed progression in my liver in which a lesion was finally large enough to chance a biopsy. Also, I am scheduled for a brain scan at the end of the month. My only symptoms are continued minor headaches. I guess my MO is really on top of things!
I totally understand your scanxiety, but I wouldn't fear the cataract surgery much. It really helped me. And as I said before, oral chemos are known to adversly affect cataracts.
I love the support of you ladies here. My DH has just started accompanying me on my MO visits at my request. Until now he has left it up to me. But I sense I need his ears and his input as my mind slips more and more.
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I am going to ask my MO his thoughts on "molecular surveillance". I don't know how this works with stable scans. IF there is no progression seen, then I don't know if they would do a liquid biopsy. Maybe there is nothing extra to monitor if the scans look good. I am just thinking about what, if anything, can be done to monitor the cancer BEFORE it grows to the level seen on scans.
Also, to clarify more on my comment about feeling alone. I was watching the last speaker of the day and thinking about what I mean by my post on here about being "alone". This conference was an all-day event with various speakers. If a person was there in-person in Philly at the event they take breaks- for lunch, to walk around the conference grounds and see the exhibits, etc. When watching online there is time between sessions where you are not at your computer. I called my sister during one of those breaks. She is a teacher. She is very busy during the week. She is married with children. Yes, today she could have logged on her computer and watched the conference too. But that is not her priority- understandably so. She has the weekend with her family. She knows that her sister- me -has MBC and is watching the conference to learn, but she is not going to watch and discuss it with me. I told her on the phone that I have my scans this next week. She said for me to let her know the results, but then she was off and running with talking about her upcoming busy week with her students.
The conference was a wealth of information. Nuggets to take with me to my appointments. But they are "preaching to the choir" as the saying goes. My sister/family/friends/etc is not gaining new knowledge about MBC and what I am going through. They did not get anything out of this weekend's conference.
The facilitators of the event commented to the crowd that "if you are by yourself this weekend, reach out and make a new friend. Exchange phone numbers." That would be me if I went to Philly. I would be alone at the conference.
That is what I mean about being alone in this cancer journey.
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@candy-678 I remember your busy month with scans and surgery was coming. We are all here rooting for stable scan and successful surgery for you. We understand the level of anxiety in all of this and how you can feel alone. I agree we are all so grateful for this great group here but it's not the same as an in person relationship. I was wondering if you are interested in an in person cancer support group in your area? Perhaps that could bring you a new friendship? Maybe there is someone on the site that lives in your area? LIke we have said so many times NOBODY gets it like we all do. I am blessed with friends and family but many times feel alone is this. It's just impossible for people to truly understand unless you live it! Yea, I'm curious about the brain imaging also because I've never had any either. I have often thought about it too. I'm going to ask my MO next appointment. Big hugs and in your pocket.♥️
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Candy - I just want to add a thanks for sharing those "nuggets" you've heard with the rest of us.
All of that info adds up, and we all learn a little bit at a time, and then before we know it, we actually know quite a bit - especially like you mentioned, compared to our families and friends who might not be all that interested, even if they care about us. I appreciate you letting us know the things that have stood out to you. Sending good thoughts!3 -
Cookie- I live in a town of 14,000. No big city within a 2-hour drive. We don't have an in-person support group in my town. Of course there are cancer patients here, but we do not have a meet-up for those people. I guess I could ask my cancer center if they have a support group that meets. But I would want it to be Stage 4 folks, not early-stage breast cancer. And I drive an hour to my cancer center, so it would not be too convenient to meet very often.
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Mel, sorry I am a bit late, glad her eggs are able to be saved, hard road ahead as well with treatment and such, in your pockets as always sending support your way.
Cookie, you are definitely right about the video. I can thank the leadership for pulling as together as a country and bringing out a lot of patriotism which we normally are not demonstrative of. As far as the garbage can, I am putting it to the back of mind, even resisting looking out the back door to see if it is there, would just make me angry. I decided since I talked to the property manager, no longer my worry. If it stays there, so be it, no longer my circus or monkeys.
Candy, I am happy to see you here, sounds busy and the talk about looking for the cancer on the molecular level sounds very good. I hear you on the stage 4 group being better without early stagers. Their experience of possibly reaching an end to their treatments makes the concerns different than ours of navigating treatment possibly forever and preparing for end of life before it is needed and getting a good qol for ourselves.
Well, we did the spring ahead, I did that pretty early last night so wound up in bed around normal time for me and I slept pretty well and woke up maybe 20 mins ago.
Got most of the laundry done, have a shirt and pants to do up so not too much, floors need doing, sweep, vacuum up and then run a mop, the one with the microfibre head, I enjoy those.
It is also nice and sunny , above 0 so sidewalks are bare. Part of me would like to walk up the street to the grocery store across from the hospital and find a treat for dinner, have to see how I feel, since no ice, no issue to really slow me down, will see what I want to do. We are supposed to reach 68F or 20 degrees sometime this week. I am not at all sad the snow is gone for now. Never what can still happen.
I must say, I made all meals in one mini griddle yesterday. Started with the egg and sausage english muffin. Did both halves of the english muffin, buttered them and they may have take 3 mins, sausage pattie next, flipped part way through but again, maybe 3 mins and the egg which only took two mins max. Took the english muffins, put a minor amount of mayo and build the sandwich. Last meal was 1/2 cup of peas, chopped in with a lot of cheese and some chips to give it dimension. Just pulsed the chopper. Had to spoon out into the mini griddle. Did 3 separate cooks, each maybe 1 min, flipped once each time. Came out a bit crispy but when seasoned with 1/4 tsp nusalt and salt with sour cream and onion seasoning, it was good.
I will say, still taking the vit D gummy and another vit with vit c and D. I do ensure I get at least 1000 of potassium from the nusalt along with the incorporation of more greens, no muscle cramps either as I still suspect I was too low in sodium. Returning to regular seasoning and the potassium makes me feel fine and the weird taste of the Nusalt gets lost in the food. Just staying away from the magnesium citrate.
I am in everyone's pocket who needs, wishing all a good day as well.
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@candy-678 Ugh I understand that's a tough situation for sure. Agree Stage IV is a totally different scenario than early stages we are all dealing with different mental challenges. So fro now, here's a big cyber hug🤗
Mara Glad to hear you're going to have a warm up and we are having the same. Cheers to a warm bright sunny week ahead.
@shanagirl Hey there I'm hoping you're busy painting or enjoy the outdoors free of cervical pain.
@micmel Always in my thoughts.
@tanya_djamila Meant to ask you last I saw you how the jaw is healing?
In everyone's pocket for the week ahead may it be a improving/stable week for all🌷
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Well, had a frozen penne pasta and chicken fettucine, cracked an egg on top, heated in microwave. Took out and seasoned, used the 1/4 tsp of Nusalt, gives 1000 units of potassium, 1/4 tsp regular salt and 1/4 tsp of the sour cream and onion seasoning. I did also add some garlic spread for flavour as well. Probably should have added more of a binder to it as it was a bit salty but still tasted good. I will think of that next time.
Last meal of the day will be what I made yesterday, which was essentially cheese , few tortilla chips and pea sort of cakes, make them in the mini griddle again. Could also add some peppers and dip them in sour cream. When done correctly they come out pretty crispy. I may also have half an english muffin toasted in the mini griddle and add peanut butter for dessert, I have tons of chocolate but might be good to have another sweet flavour.
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Well my goodness, really slept in. I think part was the move the hour ahead but that was OK, feeling good, sunny again. We will be warm most of the week.
Not too much happening today, laundry, sweeping, vacuum and possibly a mop.
Not sure about food. The peas chopped in with cheese and chips then fried in a bit of butter in the mini griddle were good, had to do it 3 times, they started at two minutes then a flip and staying in another two minutes. Came out crispy and it was enjoyable. Dipped into some sour cream and onion dip. I also had half an english muffin for garlic bread and decided to have the other half for dessert with butter and peanut butter. It was really good. I have to check the fridge and freezer, see where I am at to make things with, still have plenty of cheese. Think the first meal will be the egg sandwich, heat up butter and cheese on the english muffin first, toast butter on the other side of english muffin, follow it up with sausage vegan pattie OR heat up the sasage pattie first, then egg then the english muffin, not sure as of yet.
It is quite warm this week, still have a bit of snow to melt but sidewalks are dry for the most part, booked a Paratransit trip for pick up at 12 pm from my place, taking me to Walmart, gave myself a couple of hours, lets me walk around the mall a bit and pick up a couple of things from the store if I need or even just want to get a couple of things at Walmart, I will see how I feel. I have Herceptin Wed but feel that by making myself busy on Thursday, can combat the exhaustion post Herceptin by keeping busy. If it is enjoyable, may also book another ride Friday and see how the weather is on Saturday. At some point might get myself used to riding regular bus too but I am spoiled from the at home pickup and drop off and I use the ramp to get on and off which is easier.
Hoping everyone has a good rest of the day and in pockets for all those who need me.
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Addition to previous post, I did book all the Paratransit for Thursday for a mall walk and bit of Walmart shopping but feeling proud of myself told SIL as I never book to go anywhere but the hospital. She does not wish me to go out Thursday but suggested we go out Wed night, not telling her it is Herceptin day or they won't take me out Wed and I have not seen them going on almost three weeks. I do believe I will be fine and the not sitting will help with exhaustion.
Also, did make half an english muffin with cheese toasted on, an egg that had two yolks, I have never observed two yolks in one egg but there you go. I also put half a sausage patty aside too. Figure tonight will be a different sort of meal, unsure of what at the moment. For the current meal, added sour cream and onion dry seasoning with a bit of sour cream and 1/4 tsp of the nusalt and no extra regular salt, it is just too much, figure everything else has decent sodium content. Next time, might add 1/8th tsp salt and 1/8th tsp of the nusalt. The meal was good too.
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@mara51506 Kudos to you for making your own plans to get out and enjoy the world. I always enjoy wandering around Costco-especially when they have samples! Looking forward to my shopping early this evening.
I took a hard fall today on the pickleball court because I was trying to stretch the life of a pair of shoes. But good news is that nothing broke-I think the Xgeva and my increased calcium consumption is working to keep my bones strong.
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Mara I'm sure it's nice to get up and go without having to wait for anyone else. Hope you get to see DB and SIL as it is nice to have company also. Get out and enjoy the sunshine and warmth this week.Ha love the one egg and double yolk…bonus.
@chicagoan Hope your not to sore tomorrow, glad nothing is broke! Nice to hear your out playing pickleball. My bil is an avid player seems like once you start it's addicting, sure is great exercise.
Took Buster to the beach today as it was sunny and 64! He had a blast running and trotting in the ocean a bit. He enjoyed many pets from passersby and it warms my heart that he puts a smile on many faces.
Hope everyone here had a good day.
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@cookie54 my favorite part of going out to the beach is seeing the dogs, they are usually focused on more important things than me (other dogs, sticks, jumping in the water) but sometimes they run over to give me sniffs and licks. Makes my day!
@threetree hope your scan went okay today, and I'm in your pocket for your MO appt.
@intolight hope your new med kicks back the cancer for a long time, with very minimal side effects please!
@chicagoan that pickleball can be dangerous, lol! Hope you just need a bit of rest before you're back at it.
@candy-678 your posts always resonate with me, being alone myself, and my few friends locally really don't understand things like anxiety about scans every time. It seems like it's just noise for them, so I try not to say anything much. Intetestingly, a friend who lives far away actually does get it and I can send her lengthy emails about how I'm feeling. But not the same as in person. I did recently go back into individual therapy, with a clinician who has years of experience working with folks with cancer, and also with grief and loss. Loss of my husband, my job, my health. It's a lot, walking this MBC path.
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Chicagoan, I am so sorry you fell but glad nothing was broken, no doubt vitamins kept your bowns strong. I have made myself busy because when I mentioned going out Thursday, they are afraid I will get over tired doing two things. Have to keep the Herceptin appointment quiet because they want to go out Wednesday night.
Cookie, glad you enjoyed your weather, ours is really nice, at our warmest we will be close to 70.
sfcakes, I am glad that you have someone you can talk to about cancer and they really listen. I often think people want to make it better but I know for me, it sometimes slips out to other people and they act sorry for me but I let them know I am doing alright at the moment and have been lucky.
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SF-Cakes - Just want to say thanks so much for the support re scans today and MO visit this Wednesday. I had the scans, but the results aren't in yet, so I'm on pins and needles. One of the techs said when I was done, "We're hoping for real good results, of course!" and I'm just really wanting to think he knew something I didn't - maybe just a nice comment from him, but a girl can hope, right?
I too live alone, and have a few close friends. One of them even accompanies me to my appointments, so she sees a lot of what I deal with directly. Even with that, like you said, oftentimes it just seems like noise to them when you talk about how anxiety producing all this is and more. I think it really is one of those things where only others going through it can really understand, so I'm extra glad for this group. I also have another old friend in another state and we do talk on the phone occasionally, and she gets all this much better, than my local friend, because she has stage 4 lung cancer. We share our ups and downs when we talk, because we've both got this stage 4 thing going on and understand. I think I'm a little better for her too that way, as opposed to her other friends, for the same reason, i.e. we are both living through this at the same time and understand for the most part what the other one is having to deal with. I don't fault the people who "don't get it" though. I think it's probably pretty par for the course, and I would probably be that way myself when it came to something I really had no personal experience with.
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@mara51506 Here's an interesting article from my hospital on foods that can lower blood pressure. Thought it might be useful for all of us. https://www.nm.org/healthbeat/healthy-tips/Foods-That-Can-Lower-Your-Blood-Pressure-Naturally?elqTrackId=567d64c515b2428d8682540bc73dcc52&elq=02dd4fcd4e1c49b68c7848cfc6c2c599&elqaid=1640&elqat=1&elqCampaignId=538&elqak=8AF533B40C2C1E1A611B72F27A7F2D8F20F5BDAF65C30BD3A38C1A7FB51EDF16ADA8
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Chicagoan, thank you for the link, I will keep it in mind with everything. One thing I am doing is using 1/8th tsp for seasoning depending on sodium content, 1/8th actual salt and 1/8th nusalt potassium. Keeps food reasonable tasting, potassium is good and not over salty.
Made two mini beef pot pies with some peas, mashed up. Heated for 3 min 30 seconds. Pulled out, added garlic powder, 1\8th tsp buttery steak seasoning, 1\8th tsp sour cream and onion seasoning and 1/8th taco seasoning. Also added 1/8th nusalt and 1/8th tsp salt, not over seasoned at all. Finished with 1 tbsp of sour cream as a binder, it tasted pretty good to me. Figured enough sodium not to kill me but keep me from cramping up.
In the middle of laundry and it is garbage day so have three or so bags to take out, recycle is this week too so will start getting boxes out that have been broken down, have a huge one. I must say I was bad and checked if the garbage container meant for my apartment that I never use was put back but no one has bothered so far. It is full and heavy, not bothering to put it back myself though admittedly tempted. It would be very heavy anyway. Property manager knows anyway.
Nothing else exciting, budget boosting with a game, you sort blocks of the same colour into tubes, super easy to do. Got the TV playing cooking videos that pay for the ads. Ads are a pasta brand.
I did see the info mods are giving for people on Medicaid that are dealing with potential or actual cuts, I am in pockets for all affected or potentially affected. I am in regular pockets for all who need me and hope the rest of the day is a good one.
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Got my scan results back and by my reading, everything is stable except for some ongoing liver issues. Over the last year, they keep seeing lesions on my liver that are supposedly increasing in size and number, but very, very slowly. At first they didn't even call them metastases, now they do. This was another one where they said the liver spots were "stable to slightly increased in size". I see the oncologist tomorrow, and I'll just have to see what he has to say about all of this. He has been talking things like liver biopsy and even Y90, but has so far put it all off, due to the extremely slow pace of what seems like progression. I've also been in no hurry to get a biopsy or have any sort of liver procedures. The thought terrifies me. Not sure why everything else stays stable, but this liver stuff seems to ever so slightly increase every 3 months with the scans.
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Threetree, in your pocket for the upcoming appointment with ONC, happy to hear some stability, in your pocket for the other lesions on it.
Laundry is done, slept OK last night which is good, got Herceptin and DB and SIL want to go out tonight. They felt I would be too tired tomorrow after telling them I was going out., did not say that I have Herceptin so shhhhh as I want to go out tonight.
Need a quick breakfast so microwave eggs, toast english muffin and put cheese on one side. Include some sausage as well, include that in the eggs I think, ketchup and mayo in the egg dish.
Hoping everyone has a good day, in pockets for everyone who needs me as well, in my own pocket to maintain good energy as well.
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Thanks for the good thoughts, Mara. I'm hoping the onc has something positive to say - he usually does, thank goodness. Your microwave eggs stood out to me. For years and years I had always assumed you couldn't microwave eggs, and then a co-worker told me how she microwaves them to make an egg sandwich and I was amazed. Then I read online too, that they are very microwavable. Ever since then, I've been microwaving eggs left and right. It's about the only way I ever cook them now. It's not the same as on the stove, but it works for people like me who live alone and just want something quick and easy.
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Threetree, I am thinking of you as you visit your onc, and that the liver mets news is good. I have liver mets and just changed to a new drug (Orserdu) to work on them. I start today so I will let you know how I am doing. I have been having liver mets since my original diagnosis, 9 years, but they just now are growing large enough to be concerning.
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@threetree Glad to hear things are relatively stable and the liver lesions are slow growing. In your pocket for tomorrow’s MO appointment . Positive vibes your way.
@intolight Also in your pocket as you start your new therapy. May it be good to you with little or bo side effects, fingers crossed.
@mara51506 Hope you were able to enjoy a night out.
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