My Husband, My Life, My Love, My Family, My Cancer
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Thank you, I have been helped by people in the neighbourhood 3 separate times. First time was 2020, tripped an fell and promptly pass out after contacting my brother. Though the people did not want to try and lift me when I woke, they stayed with me until Chris and Kelly got there. Second time was when I fell later in 2021 and fractured my elbow and now today. If I have to be outside in future, I will bring the walker and train my body to be in better shape.
Sunshine, I am doing fine now, taking it easy at home. My solution to this issue is two fold since I still have to walk a fair distance to get a bus stop, bring the walker, walk maybe 5 or ten minutes and plunk myself in the seat in shade if there is any and just take a short rest, get up and keep walking, the sitting is the biggest thing. I cannot always avoid the heat due to appointments etc. Going out earlier in the morning will be helpful as well. The other is that I really need to build endurance on the treadmill. Even when I was earlier on in my cancer and getting chemo, I weighed less and could walk further. I don't remember my face being as red as it gets now. I am eating less junk and disciplining myself as well. I remember walking the 6 miles or so to the mall there and back and no issue either so not sure what the difference is.
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oh boy do know the limitations this cancer brings! Today I have “alot" (relative) of energy as I'm at the end on my treatment cycle. I made some Kind Bars. DH has been on a quest to make the perfect Tex-mex bean, beef, and cheese burrito. He is working on the bean part, not having much luck despite cooking them in lard and BACON GREASE. What in the world do they put in them? I took his leftovers and made a taco casserole that is pretty tasty. Will put it in the freezer for him as I don't eat much beef….or lard ….or bacon grease.
Mara I forget, do you have any portable cooling devices such as fan, mister, neck wrap, reflective umbrella? Those could be options to keep cool. I saw an umbrella hat today as I'm looking for something as well. The high was 101 today and no end in sight. I haven't stepped out of the house today.
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oh Mara~I’m so glad your ok and people helped with a ride. It’s just plain hot outside. Nasty hot. Please be careful everyone.
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Mel, I will be more careful and if I need to go out, will go in the morning.
Well, my older DB came over and dropped off a couple of Krispy Kremes this evening. I thought that was a very nice thing to do. They were very good.
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I got up early today to get to the big outdoor pool which is finally warm enough after all the heat. Nope - the train line to get to that pool is down today even though I checked last night and it was running. Another outdoor/indoor pool is about 5 bus stops from here, but they have the outdoor pool shut down and limited indoor use due to inability to recruit lifeguards. There is a third pool which is outdoor AND heated with better times and no stupid app to go through, but I hadn't anticipated needing to go that way (and get on a bus for 40 minutes each way) this morning. Private gym pools in the area are WAY too expensive and not located well. I dont know how I ended up in such a pool desert but honestly, I just want to go swimming!
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Anyone needing pocket duty this week?
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Nothing planned today, looks like today is not the day to go anywhere, risk of strong thunderstorms and very humid, not planning to put myself in a position to have to be helped home although that was so kind. If hot and have to go anywhere, even if to a bus stop, taking my walker to sit on in the shade every few minutes. Other than that, solving the mystery of the missing sunlight powder detergent. I have my bed on risers so use that for underneath storage where the detergent probably is, need to organize it more, it is haphazard under there. Going to walk on the treadmill and force half an hour at a time as well to build up more cardio endurance which should probably help with the heat as just a couple of years ago I got hot but did not get faint in the hot weather.
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kikomoon, my DH is the bean cooker in our house and after pre soaking the day before, he cooks them low for hours with ham hocks or pieces of thick cut bacon (no lard or grease). I make decent tortillas but I’m still trying to figure out the secret to making them more stretchy.
It rained overnight, so it’s cool in the 60’s, I’m going to try to get more gardening and beach bar work done today.
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Mae, I think that weather is passing through today for us as it is cooler for tomorrow. Plan to get mail at the depot since they cannot deliver until box can be fixed outside of the building. Would be cool if they made the codes the same so door would just open and then would not need a key at all.
Breakfast is the usual bean meal, 1/2 pinto beans, small amount corn baked in the oven for 20 mins at 450 to obtain crunch. Adding some beefless ground. In order to make sure it is all heated at same time, leaving the beans and corn to cool off so I can add to plate with the beefless ground and microwave 60 seconds. Caesar dressing and italian seasoning will feature with this dish. May grind up some corn flakes, read they are high in iron as well so using my spice grinder, add them like a spice.
Lunch will be a premade meditarranean salad kit stretched out to two meals, combined with rice that I have, unsure of seasoning.
Dinner features beans again, black ones this time and not likely going to contain anything else. Will figure out seasoning later.
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Had to catch up here before posting again, twenty pages of updates. I'm so happy for those who had great scan results, and so worried about moth and bevjen, and so very sad about Sheltand Pony, who joined BCO around the same time I did. I'm having an increasingly bad time dealing with cancer and its treatments and I thought of the thread When It's Not Just Side Effects, and the Death and Dying thread and it's awful that so many from that thread (from all the threads) are not with us anymore. They left us with their wisdom and their love, but they still left us, dammit, and I wish they didn't.
Been two months since I've been aware that Taxol isn't working anymore and the cancer is growing. CT scan, 3D mammogram, ultrasound and biopsy all confirm "significantly worsened since prior CT." But still no new treatment. Still trying to get Enhertu (my first preference). Signed some papers on Friday to attempt to get the manufacturer to send me the Enhertu without going through my insurance, which denied it three times.
The second opinion oncologist said Doxil was also a possibility, as is PIQray, but that endocrine therapy won't work fast enough to give me relief on the ulcerating tumors on my breast, and that the increased masses in my liver and lung are also a worry.
That leaves radiation as a possibility to shrink the breast masses quickly. I go for a consultation in four days. Any suggestions on FAQs for a first time radiology consult? I've never had rads.
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NineTwelve is Todelvy (sacituzumab govitecan) a possibility for you? There is more data for the insurance companies to see and many MOs who use it first. It is a ADC (antibody drug conjugate ) as well. I am not sure if it is actually approved for non TN breast cancer.
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According to this press release from June 4th, Trodelvy hasn't been approved yet by any US government regulating agencies for ER+ BC. It looks promising, though.
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Hey NineTwelve - good to see you! For the rads consult, ask about how they intend to radiate the ulcerating mass and around it and likely post treatment requirements in terms of dressings/creams and potential for complications. For my breast rads it was explained where and how they were going to radiate and why those areas/approach (I had a bolus applied - like a giant mousepad- to direct the beams differently), how many sessions, etc. The clinical onc also checked in halfway thru to ensure I didn't have any skin breakdown etc. Its one thing, though, to slap a ton of cream to moisteurize a complete breast and quite another to manage radiation side effects on one with an existing ulcerated spot. Id want to know about risk of further skin breakdown and how that would be dealt with.
Id also want to know, given the rarity of your case and lack of defined/accepted treatment pathway, if the onc has treated something like this before, typical success rates,and common complications.
Good luck and I hope you can find something soon that starts to resolve this issue.
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Well, cooler weather here and sunny. Decided that I am going to use my walker to go to the postal depot and to pick up peanut butter. The security of having a seat to sit on here and there is not lost on me and I think it accomplishes getting back into better shape while being more secure and hopefully preventing people from having to rescue me. I need to be able to walk again. That way, if I walk everyday, I will be in shape for winter.
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Mara51506– you are such an inspiration!
Good luck on your planned outing today.
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Well, the trip was good and bad. Good because I could rest whenever needed which was around three times there and a couple on the way home. Did not make it to the post office, knew I could not handle that so I got the peanut butter I wanted and a couple of chocolate bars. The walk I found quite awkward and almost tripped over the wheels but managed to keep my footing. I did apparently walk 10000 steps, partly due to having to walk around the store. I think that I need to realize walking is not and may never be the same as I could do before. Bus will be used all the time and that is just it. On plus side, no tripping over feet or side pavers, no neighbours having to come to my rescue. I do feel better, less overheated now. Even though it was cooler, I still turned bright red. I will say, I almost feel like walking this evening for 10 or 15 mins post supper, skipping the walker, should not need it for that. Going to be better about adding the shorter walks to bus stops I need to do.
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Good evening ladies
Sorry to read about Shetland.
I decided to attend my youngest brothers wedding in Casablanca Morocco and afterward visit France and maybe one othe rEurpoean country (Germany or Italy). I did a lot of soul searching and introspection and praying before I made my decision. Finally, spoke to my doctor this past Tuesday and he said go for it be careful try not to take any chances. I left Thursday had a layover in Montreal, what an amazing airport-places to lay down pianos.
The wedding is Saturday and I’m trying not to eat too much that I won’t fit my dress but I don’t know how that’s working.
Pocket duty for anyone who needs it.
Take care everyone
Tanya
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wow Tanya that soundslike a far-out trip! Have so much fun and see so much stuff, eat all the food, drink all the wine, see all the sights! Please post pics somewhere later.
Have a blast!
Not much here. Had my 4th Enhertu infusion, picked up some bean and cheese tacos at Bill Millers, picked up groceries, cooked salmon patties, watched Better Call Saul (twice), did dishes, now rewatching Coherence which is a great movie.
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Tanya, love your international trip, sounds like a really good trip and glad doctor agreed to it. Congrats on your brother's wedding.
I am doing my mail run part two. Not using the walker this time, I found it awkward and was almost tripping when I wanted to sit in it whichit is cool outside and if necessary can take bus home. Plan is to go to the mail depot and see if I have mail. Getting tired of this nonsense, want the box outside to be fixed but I have emailed a few times. I am also going to go to Walmart too, want to get some southwest salad mix to add to beefless ground for taco meat meals, the idea just appeals to me as a meal. Walk around the mall some and that should be sufficient activity. Not getting back to counting steps but do want to stop having to pop a squat places, need my endurance back now that I am reasonably confident in my walking ability. Want to go back to walking to the mall and stopping for lunch on my way home. I miss that.
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Tanya: I am so glad you got a great trip in. In my youth my DH and I spent almost a month in Morocco. We travelled on the CTM (bus) and, of course, had to take the Marrakesh Express. It was 1976 after all. I am sure the country is much changed. We had some truly fabulous experiences. It was pretty darn hot in the south but it was dry heat so I survived. It is humidity that does me in. It was in Tetouan that I heard my DH scream from the bathroom. "Come and see this cockroach!" Nope. Not if it makes him scream. "It is HUGE. It isn't running away" Nope.
Ha ha
Rabat, Fez --- all so beautiful. We went to Gibraltar from Tangier to do our laundry. One should visit The Rock when you are that close.
We ate lots of tangines. Chicken with preserved lemons. We figured out the best places for safe street food.
Smoked hash with a Tuareg (Blue Man) in his calash. He was raising money for his tribe. He liked Jimi Hendrix and Pink Floyd.
Great memories.
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Oh, Tanya, your trip sounds fun. I took French 5+ years ago. There was one woman in the class who was getting married and moving to Morocco with her soon-to-be husband. She wanted to be able to communicate with her husband's family. I can't wait to hear about the trip!
Carol
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Well picked up the precious little mail there is for me, flyers, wig magazine and old appointment sheet. Only going once a week to check it, bills come in email. I did turn lobster red, walked 60 mins between two bus rides. I did not feel overheated but this is the way I am, turning bright red and there apparently is nothing inherently wrong with it so long as there are no other symptoms of heat related illness. Felt like I went further without any issue and preferred not having the walker with me.
Some sucky news, I have not been approached yet but will be I imagine, old guy next door was offered 3000 to move out and into another place, he is thinking about it. His apartment is the size of mine and they want to rent it for 2100. I cannot afford to live anywhere else and there is no one that can or will help. Older DB looking after their own kids. Back in the day, I suggested getting a triplex, one for them, one for the boys and one for me but they want none of that. Might as well just give up when that happens, there is NOWHERE that is affordable.
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Mara,
Glad your walk went well today.
Have you ever completed the paperwork for subsidized housing? If you lived in Chicago, I could help connect you with resources but obviously I don't know what is available in London, ON but I can't believe there is nothing for which you would qualify. If my memory is correct, it sounds like the hospital social worker was not helpful, but isn't there a city housing department or disability services group that could help? I hate for you to be so stressed out over your future housing. If you lived here, we could find something that wouldn't cost more than 30% of your income.
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Tanya,
Wishing you a wonderful trip! I went to Morocco when I was 25. Complete culture shock for me but I loved the country.
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I went to get mail today too, 40 minutes round trip! USPS doesn’t come back here, just to the boxes on the highway.
Tanya, I agree with everyone else, awesome trip, I hope you enjoy all of it.
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Chicagoan, I am going to work harder to find a group that can protect me from being evicted. Nothing has been given to me so far, I relaxed. There is a 9 year wait for housing. I do know there are places for older folk starting from 55. Will be more proactive about looking. Apparently Stage IV cancer does not count. If I could get housing, 30 percent would help a lot as I have been able to stretch my income and still get groceries etc. I obviously need to find out services that could help me.
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Well new day new attitude, will continue to work toward housing no matter what happens. I will also deal with what is happening today, not down the road. No need to tie up my mind with all of that because in the end it is all pointless. Chicagoan, I did keep the link and application form for the medical and see if I qualify for that. Going forward, unless I get RGI, going to keep myself from dwelling on it here.
Our water is being shut off again so completing laundry, body decided to wake me at 6am. I already have TONS of water I can use and drink which is good. Might take a trip to the Walmart on the bus when the mall opens and get some climate control walking under my feet. Also want to look into southwest salad kit as well, I think it would go well with what I am eating now. Other than that, playing mobile games, doing surveys and other things to earn a few bucks extra for my budget.
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Just saw on the Liver Met Thread---
BevJen passed. They stopped treatment July 13 and I don't have a date that she died.
Just wanted those on this Thread to know. She posted here, didn't she?
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Tanya~awesome trip. You're so awesome to go and livelike that. I'm so envious. And happy for you what a trip! Glad you enjoyed it.
Mara~ cool key pad huh?
Hello to everyone else. I'm following along. Dealing with some gastric issues but luckily it's slowing down. Some virus or infection made it's way in to my intestines and caused swelling. It was blocking the gas from escaping correctly. Among blocking other. Things. Extremely painful without the right words to express. Like I swallowed a balloon! Ugh! But thank goodness it's improving greatly.
Hope everyone else is hanging in there. Hugs to all. To Moth. Sondra. BooBoo, elderberry, thinking of Bevjen ,Candy. Rosie. Goldens. Sfcakes, emac, runor, And everyone else. !
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Mel- You mentioned BevJen-----See my post above yours.
Hope your stomach gets better soon.
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