My Husband, My Life, My Love, My Family, My Cancer
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Laurie - great news! Now go enjoy your family. HUGS!
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Booboo- Good to hear you are happy and settled in with family.
Mara- Me being your inspiration about the treadmill?! I have never thought of myself as an inspiration. I got on the treadmill on Thursday, but not Friday. I felt more sore Friday and backed off exercising. Plus, it was a nausea day. I am just doing minimal exercising. Nothing like you Mara, or others on here.
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Thanks everyone 😁
No results on the spine MRI or tumor board meeting yesterday, so we’re leaving today as planned. If we have to come back soon, at least we can get our vehicles full of stuff unloaded first.
Previous lepto scares have dulled my reaction some, so I’m not dealing with too much anxiety or negativity about the future, it’s just so darn inconvenient right now.
I may switch to Enhertu as well, which is fine by me but it contains polysorbate 80 (small amount) and that is why my first chemo reaction was so severe and is why the Covid vaccines are not recommended for me, so the 1st infusion must be longer, come with all possible premeds and take place at MDA with quick access to the ER if necessary.
I hope to get more info next week, until then, we are proceeding as planned and will hit the road this afternoon.
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Candy, I don't walk on the treadmill nearly as much or outdoors, probably fearing a fall. I can do it if I have to but I do not forsee long walks in the future without my poles or my walker that can be sat on if tired. We will see. Considering the side effects of everything you are dealing with, I say it was inspirational that you walked on the treadmill. I don't have the same issues, no real pain, nausea or anything you have. After almost fainting when trying a LONG walk last summer and having to hang onto a pole outside a bank and asking people to help, I realized the long distance stuff is not doable. Rather stick to my Paul Eugene chair workout for 10 mins after meals and add weight to arms, legs or my knapsack to practice carrying stuff.
Not doing much today, baking some beans in the Breville oven. It's actually the chickpeas/black and pinto bean mixture, 1 cup. I think lunch will be something like 1/2 cup rice and chopped veggies with bran and queso with taco seasoning mixed with italian seasoning using the queso to bind together. Supper will likely just be an english muffin with the butter melted while toasting in the breville and peanut butter.
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Hi illimae, have a safe journey , get your car unpacked in your new home and enjoy your time there.
Mara, I will blame you if I put on weight, lol, reading your posts make me feel hungry.
Candy-678, doing any exercise is something to be praised, well done.
I spent half the day, all I can manage, painting a wall in a bedroom ,my husband is not 'handy'. I have not done anything like this for 5 years, for fear of being too unwell to finish. I love DIY, so have decided if it takes weeks it doesn't matter I am ging to try. One wall done , 3 more to go, l am worn out but happy.
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I need to vent----
I live alone. I am lonely. You guys have mentioned I should go out with a friend and eat outside, a park, etc when the weather is nice. Safer than a restaurant. A change of scenery. Some social interaction.
I have a "texting buddy" I mention on here. He has a job that he works 6 days a week-- Saturdays-- during the Spring/Summer. He was supposed to work today-- Saturday. He never mentioned being off work today. We usually check in with each other during his lunch break. We texted today at lunch as usual, and he is off work!!!! It is sunny, blue skies, 70 degrees. A perfect day. He could have texted me this morning and invited me to lunch. We could have planned something. But, No. He is planning on working on an old car--- his passion. He never mentioned being off work today. Now, no, he doesn't need to include me in his plans. But, it just shows that he does not think of me and what he could do to brighten my day. I am not his priority.
I then texted a church lady to see what she was doing today. She is with her sister. Going out to a Mother's Day meal.
I just feel so alone. I will read and be by myself today. I hate pretty days because they make me feel even more alone and bored.
P.S.--- I tried the treadmill again today. Nope. Hip hurts too much to keep up with the conveyor belt. Sigh.....
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Someone asked about ShetlandPony and I haven't seen anything from her either. Her last post was in February. I did miss the email from BCO. Sometimes I click through and assume spam too quickly. I at least have the small grey circle with my initial now instead of the huge mess of random characters that were there before. Mel, I completely agree with you, this site is hard on the eyes.
I am enjoying my time off. I go back on Friday the 13th. LOL. Wish me luck. Yesterday I had to have some guys over to take down a big Birch tree that died. My corner looks a little bare now so I will have to start looking at trees to replace it with. It was a huge Birch so it will take a few years to fill in the space. I'm leaning toward a Dogwood or a Japanese Maple that will be pretty in the fall. I made it my goal to get up, shower and put on real pants this morning so I could go to the grocery store. Here I am showered and in my sweat pants on BCO. I do need to make myself get going though. Into the rain I go...
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Candy,
It's hard to be alone on a beautiful day when it seems like everyone else is out having fun. Perhaps some of your friends think that you don't want to get together since you have turned down invitations or canceled plans in the past due to Covid concerns or not feeling well. Why don't you invite your texting buddy to go for ice cream or grab a burger later today or tomorrow (if he doesn't have family obligations)? Likewise you could suggest plans with some of your church friends-something you would be comfortable with.
I'm limping along here. It feels like my recovery is slow b/c I still walk so slow. Today it took me 31 minutes to walk a mile-but it took over 45 minutes a few weeks ago so I guess there is some progress. I'll be enjoying a quiet day now, reading and just relaxing.
Denny-I started painting my hallway over 2 years ago. I have no excuse but here it is. I have to clear out stuff before I can finish my project and I never really feel like doing that.
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Candy, I'm sorry. It sucks to feel alone. I wish we were all together, sitting in the sun, drinking iced tea (or something stronger) and talking about ordering pizza and root beer floats!
(((hugs))) Carol
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Chicagoan- You tell it like it is. I can't find fault in that. Yes, I have turned down offers before. And that has probably hurt my chances for the future. But now it seems my "friends" have moved on without me. "Candy won't do anything anyhow so why ask". Just hurts.
Probably for the best anyway. I was feeling kinda nauseous the last couple days, and today I have been passing smelly gas and after supper had some soft BM. Sorry for the TMI. But glad I was at home alone with my tummy trouble. Thanks Lynparza.
I did sit outside this afternoon and enjoyed the sun and breeze. Reading. By myself. But I got some sun.
Sunshine- Yep. A real Mel's Living Room sounds good. And we would understand each other if we have to run to the bathroom. LOL.
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hello to all ! I have been kept quite busy while at my daughter's house. Tomorrow we are on our way to Niagara Falls for an overnight surprise for Mother's day. Just her and me
I have been getting caught up on all the posts and let everyone know my thoughts are all still with you and on pocket duty.
Mae- safe travel and a wish for good MRI spine results
Happy Mother's Day !
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Candy, I can empathize with occasionally feeling lonely myself. Outside of you guys, I really only interact with Facebook groups I belong too or seeing the occasional other person when I have to go somewhere. I have had to train myself to avoid verbal diarrhea in the excitement of talking to other people as well. Especially nurses and docs at my cancer center since I know they need to get back to work. I don't necessarily look out the window and think, gee it is beautiful and I want to walk. I mostly go up the street to the store, sometimes with the poles to keep balanced. I am a computer nerd all the way and almost consider all my surveys, mobile games and such a job as they provide the bulk of my grocery money, so I am always inside except for once a week for grocery shopping or walking with my poles outside.
Chicagoan, great job on the mile in 30 minutes. I am not a fast walker by any means. Due to me feeling the need to really lift my feet walking outdoors to try and avoid tripping which is an issue for me, my steps are probably smaller. I go to the edge of the road on quieter streets to do a longer stride.
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candy- I am so sorry you are feeling alone.
I have just a few friends here and they don’t check in on me very much. DH was very honest with me last night when I was feeling it pretty bad and told me they probably don’t think I want to do anything. That I need to check in and invite them to do things. So we are going to brunch tomorrow.
I am very lucky I have DH but sometimes I just feel like a burden and everyone is getting on with it and I’m just stuck here in limbo. It helps me feel betterwhen I check in on people and do things for them.0 -
Candy - I think a lot of the problem isnt so much doing things with people or hoping they ask (and lets face it, that was somewhat of a problem before cancer even), but how the cancer reality puts up that little bit of film between Us and Others. Even though I don't share my dx, I still can feel lonely when out with friends, or even just siting in the middle of a busy park. Sometimes I like being at the hospital where they "speak my language" and I can just be Cancer Patient for a little bit and don't feel so lonely in my situation because everyone else around me has cancer or deals with it every day.
That being said, you sometimes do have to put yourself out there. I was feeling rejected and isolated from my work team for a long long time after returning from surgery and I let it get to me. Felt like no one wanted me around or cared and put the onus on others to see that and contact me. Eventually I got my head tied on straight and initiated calls with folks who had no idea I'd actually been out (thanks, line manager!) and were so happy to hear from me. And from that has come invites to meet up or other discussions. Whats important though is to not attach too much importance to people passing on a suggestion to meet up - just say oh, thats too bad, but lets try and get together soon, and let it go. Then call the next person on your list and see if they want to go get an ice cream quick or something like that. Make it easy and simple, but the ball has to be rolling and people have to see you being up and wanting to be engaged and active.
Chicagoan - you should put on some inspirational workout music when you walk!
Mae - how frustrating to not have resolution yet, although good job for not letting cancer keep you from your plans in the moment!
Hello to all!
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Thanks friends.
I did reach out to an old work friend a few weeks back. I mentioned about getting the old gang together for a "reunion". I suggested an outdoor event, since I still have qualms about eating in a busy restaurant. My friend said "yeah maybe in May when the weather is better". That was early April. Not a word since. Yes, I can reach out again, and maybe I will, but I don't want to force the issue. She knows I was excited about the possibility, and I was the one to suggest it so she knows I would be willing to do it. Maybe to her it was not a great idea. And the others in the group would have to want to do it too, not just me wanting it and them doing it to pacify me.
Mara- I too find myself with verbal diarrhea with the medical staff. Can be nerves too. I was quite chatty with the staff when I had the hip injection done. My first experience with it. And also around people when I am always alone. Haha.
So I sat outside in my yard yesterday, reading, alone. I wanted to get some sun. Like Mara said, she is a computer nerd, I am a book nerd. I wanted to get some sun to not look so pale from being inside all the time. The look I was going for was "sun-kissed", I got "sunburned". My arms mainly. Haha well that didn't go as planned.
Pocket duty list for week of May 8--
Mara- Brain MRI Wednesday
Booboo- Meet with MO Tuesday to discuss plan
Anyone else?
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Candy, my MRI is Wednesday this week.
Not too much happening here. I have a ton of bar soaps that are not getting used up so I am grating and then chopping them up gradually. Will add those soap shavings to water to beef up my foaming soap stock. So much cheaper. Just have to boil water and stir in whatever amount I need and put in a foaming soap bottle. I have dove which does not smell like much so occasional fill it with some mango liquid soap to make it smell nice. I use this as hand and shower soap and really is lovely. Better than having a pile of used up soap bars and better to have them being used up.
I am thinking that I will take a burrito and combine it with rice and a few beans for a couple of meals, just need to heat through the burrito for a minute on each side then cut it up in portions, add some precooked rice and add the pinto/black beans and chickpeas to the mix. It would stretch the burrito and give me more variety. I also plan to try buying noodles with seasoning like sour cream and chives flavor. Use the dry seasoning as just seasoning and precooking noodles, bypassing the pasta aspect with extra milk and butter but using the cooked pasta the same way as rice with my beans and using the seasoning dry with a small amount of mayo to bind it all together. It really appeals to me and I do not have to make a whole package of the pasta, just the amount for the meal.
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I managed to drive over 1/2 way yesterday and the rest today. Just unloaded groceries, everything else can wait, I’m tired.
Happy to be home 😁
I’ll probably get a call tomorrow to discuss plans or further testing and will likely be heading back to Houston in the next week or so for cancer business but I expect the trip to be a short one. Not sure how I’ll deal with something like WBR or a trial, if those are recommended but I won’t worry about that until I really need to.
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Mae, I’m so glad you made it. I hope you can join tomorrow’s Zoom.
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Mae~thinking of you. Glad you're safe.
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Glad you got home, in your pocket for whatever treatment lies ahead as well.
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Mae - I glad you arrived safe and sound. Since you were each driving your own vehicles, I imagine that have you lots of time to 'think your own thoughts' and sort things out. I hope you have good news and and all the whatifs fade away.
I don't know where that phrase came into my mind, but it's a key part of every day for me. I just need to make sure thinking my own thoughts doesn't turn into swimming - or drowning - in my own thoughts.
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Candy - I know you were really just venting. I also know you are on a limited budget. That being said, video calling on my Echo Show has been wonderful. It's as easy as making a phone call, but so much better. My sisters and I live hundreds of miles apart, but we have chatted, cooked dinner, snacked, and even shared a glass of wine "together". We've laughed about how long our calls last, but agreed it feels more like a visit than a phone call. It's not terribly expensive and it could be another avenue for socializing in your comfort zone. I know it may not work for everyone, so vent away.
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SondraF - "cancer reality puts up that little bit of film between Us and Others" this statement and your further explanation are really spot on. I can't put it completely out of my head, and I certainly don't want it to be an ongoing part of every conversation, so here I am with cancer thoughts rolling through my head at any given moment, trying to be part of the normal world that really doesn't feel normal for me anymore.
Sorry for the multiple posts. Apparently, I don't have all my sh!t together tonight. Lol
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Good morning 😀
KBL, I have every intention to making the zoom group today, however, we’ll be going to town and running errands, so I’m not sure how long I’ll be on and what cell reception I’ll have.
Seeq, I actually didn’t think about cancer at all on the drive. Instead I was engrossed in an audio book called “the Thursday murder club” about a small group of residents in a senior living center who try to solve old murders as a hobby. There’s 2 hours left (7 hour story) and I really need to finish it today or tomorrow.
But for now, I’ll enjoy my coffee and plan the day.
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SeeQ- Is Echo Show like Skype? I have not heard of Echo Show. I have used Skype before. And of course Zoom.
Well I FB messaged my old work friend (the one that we messaged before about doing a "reunion" outdoors). I mentioned it is now May and the weather is good and had she thought anything more about getting the old group together. She messaged me back 24 hours later that she is "very busy" and will be hard to coordinate everyone's schedules. So I said "No biggie" and left it at that.
It is what it is. Yes, I have been reluctant to get together with people, but when I make an effort to reach out that does not work out either. Guess it is what it is supposed to be. I just need to enjoy my own company. And be on here, of course.
Mae- Thinking of you.
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Mae, glad that cancer is not the first thought that comes to your mind, who needs that. I know you will let us know what is recommended and we will simply pile into the limitless pocket and send healing thoughts and cheer you on.
Candy, it is hard when others are busy when you reach out. Don't let it stop you, keep reaching out, find virtual groups as well where you can share a meal, chat or drink as was suggested. I don't do that much but I am also busy doing my little things so I don't think about much.
Yesterday was the first mother's day I did not feel sad. Just said Happy Mother's day to Mom's picture, gave it a kiss and went about my day. I am glad.
Not sure what I want to do, part of me wants to go out but I think I will stick to the indoors for now as I really cannot buy more groceries, running out of room to store them, fridge is full, freezer full and shelves and drawers are full of stuff. Once I am done saving the money for next year's renters insurance, thinking of saving and mapping out a freezer for the corner of the living room that holds the Breville oven and the microwave.
Grated more old bar soap to use when making my foaming soap, just add a bit of liquid soap that I like the smell of. Thinking about having a hashbrown and some of the bean mixture. We will see. Hope everyone has a decent day.
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Well my scan reports are in and they're not very good. The lumbar mri was very vague and didn't give any measurements of the big lesion at L1 that brought on my surgery and radiation. But the CT made up for that and listed several new spinal lytic lesions and gave measurements for the liver lesions. One new, the others mostly stable. I'm hoping to hear from my MO about what happens next. I've only completed 2 cycles of chemo and had several months on no treatment so maybe the liver news isn't really that bad? The spine though, ugh. And I wonder if they're also ER+ like the first one. Anyone else have both ER- (liver) and ER+ (bones)? And, I had a lousy night with heartburn and a churning stomach. Tums helped a bit but I had to sleep sitting on the couch. I hope it doesn't become a nightly thing. Feeling worried.
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Oh Rosie I hate to read that you have several new spine lesions and a new liver lesion. Maybe you need more time on the chemo- just 2 cycles in. I do think we can be both ER+ and ER- in different areas. That is the way I understand it. Though I don't know how our MO's decide on treatment-- anti-hormonals or what-- if we can have both ER+ and ER-. This stuff is confusing to me. Let us know what your MO says.
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Mae- glad to hear you made it home. You have been on my mind and I hope that the coming plan is manageable for you.
Candy - I share SondraF's sentiments. I think it's hard sometimes to interact with others who don't live this life. I think it's great your texting friend checks in on you so frequently. I'm sorry you feel so alone. I think Covid has changed the social dynamic in so many ways and we are still working our way out of that too. I guess I would push back a little and say that I don't think it's about your friend not making you a priority at all. If he's working 6 days a week and happened to get that one day off perhaps he just needed some time to himself to work on his car. Especially if that's really a passion for him. I don't think that's a reflection on you so much as it is him just needing some time for his own mental health to recharge and do something he enjoys. I understand feeling lonely and living the single life though. Our situations are different, I realize that. I think that's also the nature of stage IV, we all have different challenges and experiences with it. I'm not trying to diminish what you are feeling, I'm just trying to encourage you not to give up.
I still have a few days off. I'm getting some laundry done and if I have energy I need to get my tub recaulked and do some dusting. Lately I have to do one project a day or I get too sore and tired. It's been raining the last two days and pretty cold so I am saving the yard work for another day.
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Rosie, I am so sorry to hear about the results of your testing that show progression. I definitely think it is possible to be both ER+ and ER-, that is the case sometimes with HER2 as well. I am also sorry about the churning stomach and having to sleep on the couch. I hope that subsides soon. In your pocket for sure, paid extra rent so I can stay as long as you need too.
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