My Husband, My Life, My Love, My Family, My Cancer
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Just get some rest Shana, and we are sending our love! I’m still waiting for results. Sigh. Life is waiting basically isn’t it? Hope everyone’s day is going good. In everyone’s pockets!
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Shanagirl - Wishing you a very speedy recovery. Sorry to hear about what's been going on.
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Mel, I am glad you talked to the MO about raising your depression medicine and she agreed, you've been through alot between Covid, your mom and niece passing. I hope it helps a lot, we all love you.
Mae, right there with you about the you could get hit by a bus or we are all dying. We are not all in the situation with a deadly disease hanging over us. I don't hear this from people who have had strokes or heart attacks having their diseases minimized. I will be bummed about my fate when things eventually change. I believe it would be my brain screwing up as I do still have the bleed in my head that seems stable. Mae I am sorry your singer's passing as well. Aneurysms are very sudden and no one can be prepared.
I am not handling a chronic disease, it could turn around and ravage my body but most likely my brain. I have been fairly lucky thus far but you really cannot assume. My DB and SIL have this belief I will live long enough for old age pension which is 13 years or so away. If I do, I am lucky I guess but I don't plan ahead that far.
Cookie, I am back to my normal digestive system by adding a complete enzyme and taking the partial spectrum with each meal and bumping up the fiber. I can eat whatever I want again, no issues. If going out and want to be totally secure, might take an immodium but that is it.
Goldens, hope you can reschedule the scans. We got some wicked snow and wind, could not see neighbours house in all the blowing snow, planning to clear the snow myself so I can get out and add some salt. I just have to put together the shovel and start on mu way. Next week, snow will be gone and stay gone as above freezing again by Monday.
Besides snow clearing, housework and clothing laundry on the agenda. Not sure if shopping tonight, I really don't need anything but would like to pick up CoolWhip to make the pancake mug dessert and top with maple flavoured cool whip. The pancake would also have a buttery maple flavour as well. Would be good as well. Might cook up lentils, chopped up canned turkey, chopped with croutons for added flavour but also to give the ground beef aesthetic if possible, also do the mug thing with that this morning. Also kept a kraft dinner container to cook smaller amounts of pasta in as well which would be good for measuring purposes. We will see. At least getting in some walking at the mall as well. Might buy another bag of the white popcorn as well
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Well, turned out somebody already shoveled at the front step but still took a generous amount of melter out and sprinkled all over side walk and grassy area. It is the kind that is kind to pets, grass and concrete. Probably overkill but I did not care a bit. I know by next week that snow will melt anyway but for exiting my home today and tonight, wanted anti slip on the sidewalk and grass too.
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I think with all the hoopla around BC that happens every year, there is this belief that its been 'cured' or at the very least, everyone who catches it early (and of course its always everyone else, not you) will be cured.
Its only when a newly-diagnosed is let behind the BC treatment curtain and they get the information firehose of oncotypes, scans, protocols, drug regimens, estrogen types, genetic issues, AIs and post cancer care (what do you mean its 10 years of drugs?) that the whole facade of cure and this is an 'easy' cancer with all one-size-fits-all treatments starts to fall apart. Some folks deal with it with the U-Rah pink school, some are more pragmatic, some talk about it all the time, some just get on the conveyor and get off on the other side like it was a bad dream. But every one of those folks will now be aware of recurrence, recurrence statistics, and potential for future metastases. Most will be dealing with post treatment drugs and side effects, their own scanxiety and PTSD at a mammogram or a sore back, etc. Because god forbid they become Stage IV because then what? Cure was all a lie? All this poison and burning to still end up on treatment for a now-shortened life? I think that is tough for a lot of people to process so its just far easier to park Stage IV in the recesses of the brain and not try to think about it.
So Stage IV remains a mystery - they don't want to really know (they were cured, right?) and at many of these walks or whatever there are many Stage IVs actively participating and engaging (because why wouldn't we) through the miracle of advanced drugs, really good painkillers, and dogged determination which I guess is confusing, like we should be in a hospital bed hooked up to all sorts of stuff because all they know is hard core chemo and no understanding of the myriad of Stage IV pills and other chemo regimens available to let us live life around the bad days, whatever that life may look like.
Then again, there are some early stagers who get offended when they are blocked from Stage IV spaces or dont get that it really is almost a completely different disease and experience so no,your experience really isn't relatable. Someone on Reddit was apparently offended (ha, yeah well) when I signposted the MBC group to a new de novo, saying exactly that as she will have different needs and treatment pathways, but its true,whether you look at it as chronic (I don't but some maybe do) or a giant pain in your ass always at the damn hospital (my current mentality as Im not in a stable situation right now).
Actually, I was signing up for a secondary sisters Saturday coffee morning at the breast cancer charity house and I noticed for a lot of other workshops that aren't secondary- only there is the notice:
Please note that this workshop is a shared space for those with both Primary and Secondary breast cancer. We kindly ask that you respect each other’s experiences and if you need support before or after this workshop, please contact XXX
I can only imagine what scene(s) went down to prompt that language to be added.
Alright thats enough of my thoughts on this all.
@goldensrbest you should make up an overly large Mets ribbon out of like shirt cardboard and pin it to your chest. Or, if people dress up for this thing, go as a Stage IV ribbon. Or if you have an old wig, dye it in the colors. Or dress in the colors. You know, make a splash amongst the pink :)
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Hi all. Got my MRI results back with no significant interval change. There was a mention of "multiple enhancing calvarial and skull base lesions" so I'll ask my MO about those. PET scan tomorrow.
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Sunshine - I'm sending congrats on the MRI, since it said there was no significant change. Best of luck with the PET also!
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Shana - take care of yourself and be well! There is so much stuff going around. All 3 grandkids have been to the doc this week. Oldest GS has strep and the other2 just some crazy viral thing that’s making the rounds. Neighbors a few doors down came back from a 2 week cruise with covid. Those monstrous ships are nothing more than floating Petri dishes. Never been on a cruise and don’t plan to go on one now.
Happy Friday to all.
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Sunshine, glad about the MRI results and in pocket with the Pet as well.
Enjoy the trip Shana and be well.
Sondra, I don't mind so much that early stagers are blocked from Stage IV discussion. Reason being, people want hope and although I did not mind reading the Stage IV threads, they gave a lot info and hope to me before being officially dx. I also read through early stage stuff here but the discussions in some of the threads are quite different as well. Theirs focusing on getting through treatment until hopeful remission and anxiety over recurrence. Our discussions can be focused on other things like getting will and documents and end of life plans in some of the forums and worrying if our treatments are still working or if we have to switch. As long as we can read, get info and post where appropriate, that's all I need.
Well I got 3 knapsacks from Temu, convertible to a crossbody bag but mostly wanted as a cute wee knapsack, blue, black and white and black. I like these as I already have a crossbody for keys, wallet etc. Was off balance with two crossbody bags, knapsack holding water, charger etc will work well and keep me more balanced. Will try a bag when I have my next hospital appointment. Should hold what I normally take with me, water, charger etc. Only 25 dollars for the 3 of them.
I did go shopping with DB, really slim shop, did get oreo ice cream bars and did manage to remember and grab the english muffins and CoolWhip I wanted, going to try using it for a pancake dessert in a mug with pancake mix, melted butter and egg with some of the syrup in the mix, cook for a minute and add maple syrup (small amount) to the coolwhip. Should be good, could even take the ice cream bars, split a couple of ways and add coolwhip to that as well. Was a nice mall walk as well.
Regular breakfast for me. Had soup noodles packet with veggie seasoning, added lentils, chopped canned turkey and croutons for the beef ground texture and added wheat bran. Added the lentils and turkey with the supplied veggie seasoning, squirted small bit of ranch dressing as well. I got overly full so half is in the fridge to make something else with. Perhaps add cheese on top and eat that way, we will see.
Edited to add, going to take the other half, try to squish it into a shape that will allow me to put on an english muffin with queso spread, toast it with shred cheese on top. May add more lentils as well, we will see. Need to have some taco bites now from Michelina's.
I hope everyone has a good day and in pockets as needed.
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Welcome home Buster! He has been a sweetheart and is adjusting great.. our hearts are filled with golden love again!
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Shanagirl Sorry to hear you have been under the weather. Hope you’re feeling better soon.!
sunshine Glad to hear MR was good.. fingers crossed for PET.
Mel Sorry you’re still waiting, ugh the waiting stinks! Hoping its a good sign.
Hoping its the last snow for everyone still dealing with it.
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Cookie - Buster looks sad and wary in those first two pictures, but then happy in the 3rd. Looks like he's warmed up, settling in, and getting comfortable with you all, as you indicated. He looks like a nice, good friend. Glad you have him! Please give him an extra pet from me.
Also want to underscore and echo all that was said about the way MBC is looked at vs the early diagnosis stages. I am so glad it was pointed out. It needs to be "out there" in a big way so that the medical people and general public can get educated about a very serious and important matter. I agree with everybody's posts about that issue.
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Cookie~Buster is so beautiful, I am so happy that you were able to get him. How sweet his little face is. He looks like he’s just chillin in his new home. Congrats. Love the pics.
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Good wee hours of the morning. @cookie54 Buster looks like he's gonna bring a lot of love into your home, and maybe a couple of tennis balls, too. He is beautiful and I hope there will be many, many years you all are together. @shanagirl Oh sweet lady I'm sorry you are feeling sick. Please get rid of that crude and come back to chat. In pockets for all needs, both physical, mental, scans and faith. I'm trying to return to my Christian roots and rediscover the power of prayers. It's just recently that I find allowing myself to be happy. My sister read me the riot act when I told her I spend most time in my comfy chair in my bedroom. She scolded me and said you need a start living and stop dying mindset. She's quite ill and knows that both of us are running out of life. Anyway, her jab at me has given me a jolt that I need.
The statins are working against inflammation somewhat. I also take Claratin and Glucosome, Chondrotin and tumeric combo. Found cranberry gummies. Doing 3 bowls of corn flakes with lactose free milk daily. Remarkably it is helping with colitis. Plus I have been doing intermittent fasting for years and just read it's a no— no for cancer patients. I'm a 6-8 hour time frame eater, and rest is fasting. So now I can fill in some hours with the cereal and yogurt.
Here's to good health and safe from storms and Women's College Basketball..
Laurel
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Cookie - welcome to Buster❤️🐾🐾❤️. May he have long life with you🙏🏻. Keep the pics coming.
Irish - don’t be too hard on yourself. You have multiple health issues on top of MBC. But finding happiness again is good for all of us. May it continue to blossom within you🙏🏻.Happy weekend to all.
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Cookie, Buster looks like a very sweet fellow, congratulations on your new family member.
Irish, I am a believer that we live with cancer should be the first thought with the dying of it in back of mind. Living with it on a daily basis, that thought process has helped me get through treatments and helps a lot. Thinking I was just delaying my inevitable death made treatment tough. You'll find the balance and it sounds like you are adjusting in your attitude. If you enjoy the comfy chair, no problem with that as long as you are happy there whether reading, listening to music or watching shows or movies you enjoy with leaving the chair throughout the day.
Today is movie day, excited to see the Chostbusters movie and time with my friend tonight with a burger dinner first. Doing some laundry first while watching the Chicago Med, PD and Fire shows along with Law and order Criminal Intent Toronto. Love that show. Will go outside to check if walk needs some salting as well, know it will melt as soon as Monday but have not checked it out since Thursday. Make sure no slipping issues happening.
Food will be fairly normal today, eggs and hashbrowns. Going to plug mini griddles into and have the ability to cook the hashbrowns in the Breville at the same time. Might add some lentil action to the eggs as well. We will see. Option two in mind is to cook up battered fish, still have the eggs and lentils, we will see.
I hope everyone has a good day, in pockets with treats for Buster and pockets of those who need me as I care for you all very much.
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Irish - Can you elaborate on what you read about intermittent fasting being a no go for cancer patients? Anything you could pass along for others to read? I and many others here do intermittent fasting and would benefit from any new information that might be out there. Thanks.
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I agree. I only eat once a day!
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I hadn't heard that intermittent fasting was a no-no for us. I feel a lot better with it. I don't do fasts over 24 hours. I just have an eating window of around 5 hours. Nothing drastic.
I did get a PET scan result in my patient portal. Looks like this new treatment is working and there is improvement in the osseous metastatic disease. Esophageal issue appears to be resolved. I'll see my MO on 4/3 with labs the day before.
DH and I are guardedly optimistic.
Carol
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Sunshine - Congratulations on the PET looking good!
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I also have a limited eating window. I think it has helped to minimise side effects at the very least. I have seen competing views about intermittent fasting, but I have been doing it - albeit unknowingly for the past 13 years. I was working extremely long hours and by the time i got home was not interested in eating - so lunch was the last meal of the day for me. I never got out of that habit - even when I retired. My onc doesn't have a view on it, either way.
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Congrats sunshine! I’m still waiting for my results . Ugh!
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Sunshine, very happy for your scan results, both MRI and PET! Excellent, glad you're getting some good news.
Cookie, what a lovely addition to your family in Buster, such a sweet face.
Mara, enjoy the movie, look forward to hearing your review.
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Mel - What have your mouth sores been like? Did/do they bleed? I've suddenly developed a bleeding sore inside my right cheek. It feels like maybe I just accidently bit it, while biting and chewing an apple, but at the same time, I've never had anything quite like this before - it's gushing. Also, the last couple of days (since my last fulvestrant shots) I've had an odd taste in my mouth and it feels a bit "coated", but nothing visible. That is what has made me wonder more if it isn't something from the fulvestrant. Hoping I just bit myself hard biting and chewing the apple, but then I thought of you and your troubles and thought I'd ask about the mouth sores. I've heard of them being treatment related and all, but I've never seen or heard anything about their characteristics. That's why I'm asking.
Also have my fingers crossed 🤞for your scans! Hope you hear soon.
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I started intermittent fasting recently and have lost 7 pounds. I'd like to lose another 10-15. I can imagine it being bad for a cancer patient who struggles to maintain their weight but my struggle has been the opposite. I'm not super-strict-if I have plans for the evening, I eat later but am trying to have a 8 or 9 hour eating window. This cuts out a lot of mindless snacks for me.😄
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My mouth condition was more of a mouth burning and a marbled coating of white painful spots. They got me a mouth rinse finally and it’s helped a great deal. I’m sorry you’re having a hard time. I was told mine was definitely treatment related. I hope it goes away. Sending healing thoughts.
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Thanks Mel, That helps a lot. I'm holding out for it being just a one off where I stupidly bit myself or something. Time will tell.
Very glad that your situation has improved significantly. I know it was terrible for you at it's peak.
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I get random sores that come about the same way. As if I bit myself. They go away. I wouldnt worry too much about it yet. Just be mindful of it going away. Mine sometimes took a week.
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Mel, thanks again. I did look up fulvestrant side effects on Drugs.com and they say that "stomatitis", i.e. sores in the mouth occur 28%of the time and that that counts as "common" or "very common". I'll keep an eye on it, especially since it happened 2-3 days after getting the injections. It did stop bleeding thank goodness, after I stopped eating and rinsed my mouth a lot with cold water. Very much like an accidental bite, but a seemingly larger area and more raw and sore. Just haven't had an accidental bite quite this bad before, but who knows?
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Thanks for all the well wishes. Buster has been enjoying all the family fuss over him!
Sunshine Great news ! So glad your treatment is doing it's job.
Irish I'm glad your sister was able to shed some new light on things and give you a recharge. Sometimes just one statement can really help our mindset.
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