My Husband, My Life, My Love, My Family, My Cancer
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So really was stumped as to what I wanted for dinner meal. Had the mini pot pie heated in a bowl in microwave, heated on high for 4 mins. Just added salt and some caesar dressing this morning. I am having some of the garlic pizza tonight and will be making a couple of the frozen pasta to put in the fridge for other meals.
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@mara51506 I hope you took a nap today or really sleep well tonight! Enjoy your pizza, always a favorite choice of mine.
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Andreas and all, I'm so sad to hear of the loss of SondraF/Alexa. She and I started stage IV treatment (ibrance ) on almost the same day in November , 2019. She was smart , a great support to all of us on the Ibrance thread and she had a great sense of humor! She loved Andreas , their life in London and her family in Wisconsin so much (and her cat !). I understand how she kept some friends / colleagues "in the dark " on her diagnosis because it's not what she wanted to focus on all the time . I feel the same way . Please share my condolences with her family and friends . I always looked forward to her posts, even if she was just sharing her frustrations re lousy hospital protocol. We all are in this together. She lifted my spirits often and will not be forgotten.
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Andreas - I am truly sorry for your loss. When we come to these forums, we find a few people whose posts just resonate with us. SondraF/Alexa was one of those people for me. I appreciated her overall positivity and sense of humor - just getting on with it as best as she could. She has been - and will be - missed.
Catherine
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Good morning all, rainy here so other than trash and recycle, will not venture out which is fine by me.
Laundry, cat needs and getting together trash and recycle with a good vacuum is on the agenda, wee washer was busy yesterday and overnight trying to remove a stain out of some clothing, it is pretty stubborn but a fun challenge.
Last night I heated couple of frozen meals from Walmart order so I could fit other stuff in freezer and use as sides. I have leftovers from garlic breadsticks yesterday to use up. Will likely use up the leftovers and add some pasta on the side, option two, add an egg and bean mixture done in the microwave, chop the mixture with some sour cream and cheddar or sour cream and bacon or both then fry up in a high pan. Pan will have butter and garlic rub. Turn off heat once ingredients have been mixed together. Option three sees some chopped kale and spinach put together in a pan with beans as well. Chopped with chips as well before being put in the pan. Same garlic, butter rub of the pan, turn off burner and cover with lid. Would be good. Lots of ingredients to use like the taco bell hard and soft tortillas. Combine two of them to make the gordita crunch sort of things with beef and seasoning. I mix the beef from frozen burgers with beefless ground and white rice, boost the amount I have. Add to eggs or any other meal that pops up. Other stuff available is the taco seasoning from taco bell as well, could make some decent meals. Will post later what I come up with.
Still feeling sad over Sondra but that is normal so letting it sit then I will just remember the good person I knew from here. I do hope others have a good day, in pockets for anyone who might need me.
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I had no success in stain removal from the biker shorts so will simply use them as an extra rag or towel for dishes, will put through a normal wash as it has been soaked in bleach and agitated for the last cycle. Again, no need to cut them up for rags as a towel setup is fine.
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@shanagirl You have been on my mind lately, how are you doing with your neck?
Hope everyone is having a decent day, big time drearies here. Looks like the rain will be out of here for the weekend.
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I'm echoing Cookies' wondering about you Shana? Please update us re your treatment plan for your neck issue. Will you be doing PT? Sending a hug too.
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@cookie54 Hey Girl thank you for thinking of me. It’s been a busy frustrating last two weeks between Dr appointments, dealing with personal stuff with my computer, that really gets me annoyed and aggravated. we were. also busy running to the ardent centers and getting our garden in last week. It’s been rianing alot since. I don’t remember if I mentioned that I met with the Brain Spine Neurosurgeonand he sent me in for a NM Bone Scan and C/T Scan. Wow I. am so glad my Onc insised I see him. the scans really validated all the pain I’ve been having. My Cervical Vertebrae. C3-C4 -C5 C6 C7 came out “severe degeneration facet L&R joints. C5 -6 were the the most severe and why my Pain Mangaement had been treating with the Epidurals but then referred me to the Nuerosurgeon in the group. and scheduled me for ACDF surgery which terrified me. I am realy glad I met with the Dr. at the Spine Brain Inst. Based on the severity of how all the cervical bones had progressed with osteoarthritis, he wants me to treat it conservatively with an injection for the pain and if the injection relieves the pain and inflamation, throughout my neck shoulders arms and fingers and upper spine, by the shoulderblades in the back and stays pain free for several months, then he will do a procedure of. Radio Frequency Ablation that will deaden the nerves and leave me pain free for over a year or more. Also I started my evaluation. at the Kessler Inst, for musculoskeletal physicaltherapy twice a week. I met with them yesterday and am all signed up for therapy sppointments for the next 2 months. and a schedule was given to me. So I feel relieved that now I have a plan.🌷😊
@threetree Wow, I am so sorry you are now dealing wih Shingles. I’ve heard it’s so painful! I willbe sending. healing prayers to you and loving hugs and vibes. stay rested.
Well I promised DH and DS i would cook some chickent cutlets, so I’m off to go downstairs to the kitchen.
Hi ro all in pocket duty for those whoneed it.😘♥️
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Shanagirl! Thanks so much for the update. It's really helpful and it does sound like things are coming along and that you have some good treatment possibilities. I am so very glad!
Yes, shingles, but not too bad at this point. I think I caught them early enough that I won't have a real bad time. I got the anti viral within 24 hours and so far, I still just have the red lesions (only 4) and they have not turned into blisters like most apparently do. I'm assuming the antiviral kicked in before the blisters could form. The lesions are still there though, bright red and inflamed, and they do hurt, but less so than before, so again, I'm banking on that anti-viral. The way this small little patch has hurt (like a burn), I can't imagine what people go through when they have a large swath of their body involved - it would be agonizingly impossible! Thank you for the healing thoughts and wishes.
So glad you got your garden going - yes that takes time. It sounds like you've been real busy in a positive way. Enjoy those chicken cutlets, and thanks again for touching base - and so quickly!
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@shanagirl So glad to hear you have a plan for pain management and RFA if needed. I also hope that therapy helps also. You just want to live your "normal" everyday life and not been in pain all the time. I can smell those cutlets over here , I bet they are delicious! Enjoy.
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I’m so saddened by the news of Sondra. What a wonderful woman and person. I absolutely hate losing someone so kind and sweet to such and evil thing. Please send along my wishes of love and peace to her partner. May she not feel anymore pain and rest in peace knowing she was loved so much by everyone. Deeply sorry.
She has such a sweet happy smile thank you for sharing . We miss her already She was strong.Love to all you ladies as welll. How is Mae? Candy….?
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Mel——Good to see you post, Mel. We miss hearing from you more, but we know you are busy taking care of your daughter. You mentioned me so I will give you an update. I have posted fairly recently, but I don't know how much you read these posts and if you saw mine.
My next scans are in mid-July (4-month schedule). I am still on Lynparza. I fear each scan, as one of them will eventually show progression. I had cataract surgery the end of March. Lots of difficulty learning new vision- my vision has always been bad, but now it is different. Long story. Not much else going on. Just going day by day. Pretty boring existence. I read on here daily.
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Mel and Candy, glad to see you both. Candy, you sound similar to me except you have been busy with eye surgery, keep on keeping on. Mel, hoping you and your daughter are doing well, in pockets for Mel and her daughter and Candy lending support on the upcoming scans.
I got up extremely late, fixing a lunch now, plain. Just the garlic fingers, later will have something with eggs and beans. I found the garlic bread crust rather bland, hung on to it and ran through the chopper with some green beans to have in the egg later. Send egg mix through chopper as well. I will see. Bought some Taco bell stuff earlier, not loving the taco seasoning but I can still use it and put queso or salad dressing or even mayo to dress stuff up so will use it, I am finding that I do not want to finish the kale, not to my taste but will try to finish the spinach up, they were big costco buys but don't need to eat stuff I do not enjoy. Still love the mild chipotle flavour from bushes beans, only bean I feel no need to chop up. The tortillas from Taco bell are nice, use them with peanut butter and as said, can mix the seasoning with other stuff.
Laundry underway, did not do any yesterday, gasp!, washing a blanket, throws first and then the bigger ones, will give my collapsible pails a go to handle the water from the panda spin dryer as it handles the bigger stuff. Larger washer handles the throw size just fine. Other than all that nonsense, nothing happening here except a pull out of the cat stuff in order to vacuum and scrub the wall behind the litterbox and change the litter genie bag. Those things are stronger than they look.
Anyway enough yapping, missing Sondra but she is no longer suffering and of course sending my thoughts toward her husband, family, including us here and friends.
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Goody-goody, they say I definitely have liver metastases now and are wanting to do Y90 sometime after we see my next scans that I'm getting during the first half of June. I had just had mets to the bones, but now I'm moving on I guess. They think I can stay on the Verzenio, Fulvestrant, and Zometa for now, with "just" the addition of the Y90. Looks like there are about 5 small spots.
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Sorry to hear this threetree. I wonder if those were really the reason you weren't feeling "right." Gilda Ratner was right-It's always something. Peace to you.
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@threetree oh my , so sorry to read of the progression to your liver. ❤️❤️ I’m sending hugs, love and light to you. Allow yourself adjustment time if you can. Do something joyful this weekend. Nurture yourself as you get your mind around it. We are here for you. Hope the shingles passes and heals quickly too.
When I went to a new Rehab doctor yesterday to check on my lymphedema and have her authorize a pneumatic pump massager, she looked at me and sad Oh you look so much better than how you read on paper lol…7 -
@threetree I'm so sorry to hear about the liver mets, it just stinks! Hoping the weeks pass quickly as you wait for your scan. I know there is nothing I can say to truly comfort you. Just know that we love and care about you. I will be praying for strength as you wait for this plan. Big hugs❤️
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@threetree So sorry to hear about your liver mets, but don't give up hope. I was originally dxd with liver and bone mets nine years ago. The liver mets came and went off and on but were always lurking somehow. They were described various ways, but were always there. I was never offered Y90. My past progression showed only liver mets growing so they did a biopsy and found a specific liver met mutation. Just this past year scientists have developed a new oral med, Orserdu, that works specifically for this mutation. My first scan after starting on it three months ago shows shrinkage. The original cost is $26,000 a month but I had no trouble getting co-pay help. Now since I have reached my prescription cap on Medicare, there is no cost. It is tough to have to navigate through insurance and governmental regulations to get the medicine we need, but I am thankful it is there to be found. Take care, and have a good weekend.
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I wound up being lazy over the meals, finished the garlic bread in a pizza shape, did add extra garlic and beefless ground to it and just reheated at 280F so it would not cook again. Ripped the crust away and ate the middle for two meals, heated same way the second time around. Took the crust which was tough as heck and chopped it with green beans, can use tomorrow with eggs or whatever. Cats are not amused when I turn on the robot vac but may use it post their meal that they are eating now.
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Chicagoan - Thanks so much. I don't know if this was the reason I was "off" for so long, or if it was from the shingles. I thought I felt like a virus was a possibility for all that I was experiencing, and then when I saw the NP he said all that stuff I was feeling often comes with shingles. So far I don't think the liver lesions are that big (to cause real problems), but you never know. One of the worst parts of this business is trying to figure out what's causing what. Love the Gilda Radner quote. I've thought of her and that quote often since I was originally diagnosed. Thanks again for you good wishes, and I wish you peace also.
rlschaller - I definitely appreciate the hugs, love, and light - thank you. I am really hoping to do something pleasant this week-end. We won't have rain and we might get to 70, so that's great for walking, and walking is what takes me to my "happy place". I especially love it now with all the blooms and birds. The shingles have not gotten any worse thank goodness. I'm hoping the anti viral nipped that in the bud, and that it will start to improve. It's holding it's own right now; not better, not worse. What a comment from the rehab doctor about how you look??!! Life is so full of "interesting" things.
Cookie - You are always such a nice help. Thank you for chiming in with nice thoughts and good wishes. I guess I'll get through this one way or another. I've had an OK run of two years with it just being in my bones, and as we all know, something is eventually bound to happen, and I guess this is it for me for now. They do seem to think they can manage and keep it under control for awhile at least, so there's that. I'm just dreading all these procedures though, and then what might come next of course. I really appreciate your support, and hope that you have wonderful week-end too. Hugs back!
Intolight - You are an inspiration to me, and I've thought of you often, as this liver business has unfolded, because I know that you too, had several spots that were growing slowly and being watched, with nothing real definitive for awhile. I didn't realize it had been as long as 9 years - wow! I also remember your unpleasant (understatement) experience with the recent biopsy, and I've even mentioned it to the doctors when they tell me a biopsy shouldn't be a big deal if it goes routinely. I think whether you are offered Y90 depends on the nature and location of the lesions. They are also talking about maybe a mix of Y90 and ablation; just nothing real solid yet. Thanks for the Orserdu info. I didn't know it was liver specific. My oncologist is wondering if what's in my liver does have a different genetic make-up than what's in my bones, because the Verzenio, etc. is continuing to work on everything else (knock on wood), so he thinks we can continue with that for now and just treat the liver issue separately. I'm so glad to hear that your latest scan is showing good things! I think our insurance system has a lot of flaws that could be improved upon. It may be the best system in the world, but that doesn't mean there isn't room for improvement. You take care too and I hope you have a nice week-end. I imagine that it really is exclusively spring now for you. More recently I know you were still getting a bit of winter tossed in with your spring. Thank you.
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Dear threetree, sending you love and grace to take on this next hurdle, in this seemingly endless line of hurdles that we keep having to jump. And you also have shingles, that really feels like quite enough to be dealing with all at once.
And our dear Sondraf/Alexa, I've lit a candle for you, and there will always be a light in this world because of what your soul gave to us.
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SF-Cakes - Oh, your good thoughts and wishes are very comforting and much appreciated. Thank you. You are so right about this being an "endless line of hurdles" - it's a very good way to put it. No, this just hasn't been my week. Shingles, progression to liver, and also what I believe was an unwarranted fine from an oversight board for my work. (I don't want to post a lot of detail about the work related board and the issue, but my "error" for which I was fined, i.e. late paperwork, was due to my cancer fatigue). I'm hoping that the sunny and 70 Memorial Day Week-end we will be having here will pick me back up and get me back on track for awhile. I hope that you too will be having some nice weather this week-end. It sounds like much of the country will not be. San Francisco is often on the "same wave length" as Seattle though, so hopefully we will both luck out.
Lighting a candle for Sondra/Alexa was a wonderful thing that you did. I think lighting candles just does something that nothing else does at times like this. She was a delightful person, gave so much, and will be missed terribly by so many.
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Threetree, I am sorry about your liver mets, in pocket for moral support and whatever happens from here. That is rough news to process, I am very sorry.
I am up late so my tegretol prescription will have to wait until Monday but that is fine by me. I was going to walk over but can do that on Monday, setting alarm for tomorrow to make sure up in time to get a ride for Herceptin with Paratransit.
Laundry on the agenda, more floor cleaning also when I receive my sweeper/vacuum combo, cordless so may be of some good use. Still got the robot vac as well, floor looks better because of that but have the rest of the apartment that needs it sweeps and vacuums as well. Laundry about to be started.
Edit the floor vacuum works well, can turn it sideways to get into small spaces which is good, got it recharging in the bedroom for now as the charger is the same as my cordless handvac which is good. Not expecting vacuum levels of suction but could be a good addition to floor care.
Not sure what food I wish to have, something green with eggs, beefless ground and cheese, do in the microwave. No chopping, just slicing up what I will have. Later take some kale and spinach and have a tortilla wrap with that, may put some peanut butter on the tortilla before the greens, have heard about peanut and greens being a thing, I will see.
Had a big bowl of greens, kale and spinach, added bran to up the fibre. Put some caesar dressing, mixed in with mayo and added some of the cheeseburger seasoning with sour cream and onion seasoning which was really good. Did chop up the greens first. It was good, did take digestive enzyme and an immodium tablet which kept things civilized and gave me some extra laundry to do. Using wee washer for that, my blue one, will rinse, wash again and then put the stuff in one of my other bigger washers for the rinsing and softening stage. Still enjoyed the meal overall though. Next meal will be the eggs, chopped beans and beefless ground
I am in pockets for all who need me, hoping everyone has a good day.
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Mara thank you, and I welcome you into my pocket! Have a good day and make yourself something tasty.
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Threetree sorry to read about liver progression. It’s amazing how many treatment options. Sending hugs and support. I remember Mel had the y90 years ago to her liver and continued on ibrance.
Planning for PA trip next week and visit with my mom DD and 3 sisters. My back is pretty sore for weeks now. Arthritic pain and I like to garden the two don’t mix well.
First week of June I’m scheduled for port removal. No more zometa and this port doesn’t give blood. My onc said I should replace it but for now I am just hopeful for easy removal and healing.Sending hugs
Tanya
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@tanya_djamila Glad to hear your visiting family next week. I hope your back pain is controlled so you can enjoy your visit. It's a bummer that you can't do what you enjoy without pain. Back pain can be so debilitating I hope you get some relief soon. We'll be in your pocket for a smooth port removal and healing.
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@tanya_djamila Sorry to hear about all your back pain. I am hoping you get some relief so you can enjoy your time with your family—sounds fun. Let us know how your port removal goes. I don't use mine much anymore except for six months Zometa and occasional scans where they are willing to use the port to infuse the dye which makes it so much easier. This week my onc had me schedule regular port flushes every six weeks to keep it working correctly instead of removing mine, but I am interested in knowing whether removal is a good solution. Sorry—I can't think well so my grammar and sentences get wonky…
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Have a good trip, Tanya!
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ladies, thank you for your kind words and messages. I still can't believe our Sondra is gone. she was bone-only and the oncologists couldn't figure out the best treatment, they kept switching treatments from one to another, and all those hospitalizations didn’t help her at all. I'm just heartbroken and angry.
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