My Husband, My Life, My Love, My Family, My Cancer
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Morning all. I am reading along. Sorry I am not commenting much.
Goldens- Congrats on the stable scans. My scans always say "fatty liver". No one— MO or PCP— ever mentions it.
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good to see you Candy….. hope you’re doing well.
Hugs to everyone. Available for pocket duty if needed.
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@goldensrbest Congrats on the stable scans. Great news to receive during Easter!
My DB told me about Walmart delivery and he even was able to get them to deliver during our little family reunion. (The trick is to remember to change the delivery address.) I am sold! Will start this week…
@irishlove I agree with Mel on taking Claritan. I take it before my Zometa infusions also.
My small Easter dinner was great. DH used the smoker on a turkey breast and it came out amazing. My DSIL came over early to help prep dinner as I passed out this morning after taking a shower. She is awesome. Just her, her DH and the four of us (DH, DD, DGD and me) but it was good. It is nice as they all understand my challenges and don't mind a slightly messy house too. We have plenty of leftovers for the next couple of nights too. Our trees are going in as I type trying to beat the predicted snow this afternoon. The joke is the reason Easter eggs are colored in Colorado is so the kids can find them in the snow!
Praying for a good week for everyone here.
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Goldens - Glad to read about your stable scans. Congratulations! Spring is the time for renewal, so the good scans fit right in.
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Goldens, I am happy to read abut stable scans as well, always good to read about that. Doing a seated happy dance for you.
Decided that I really need an earlier bedtime in order to get less angry over stuff that in the end really should not matter, next task will be finding a spot to put the garbage can and clean it out every time, solve my own problems, if it is not there, cannot be used. Will check it out front around 10 to make sure no one tries to fill it.
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Goldens, hurrah for stable! So happy to hear this, thank you for sharing the news.
Mara, damn straight that an angry cancer patient is not to be messed with! They need to stop messing with you.
Sunshine, your dinner sounded so delicious, and isn't it lovely when friends bring us a gift? Scones are my go to favorite, mmm.
Irish, thinking of you and hope all went well today for you.
I went in to my office today and met with my direct boss and our director, let them know I was resigning, and they were very lovely and supportive. And then we gossiped for a while, lol! I've known our director for nearly 20 years, it was really good to catch up on things. I feel relief and of course some sadness, but they said some great things about my work and the positive impact I've made. Will go in next week to pack up stuff from my office and see more colleagues.
But first, to the symphony tomorrow night to hear Yo-Yo Ma play! Bought this ticket about six months ago, and am delighted to be able to go. He is not only a genius cellist, but a truly kind and good person, I'm thrilled to be in the same room (well, massive concert hall) with him! This was on my bucket list for sure.
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Good morning all. Hope you had a great day and loved to read about good scans. I know later today the weather service is concerned for tornado outbreaks and other severe weather. Please be weather wise and have a plan.
@micmel Thanks you for the tip on Claritan. It's on my daily regiment to help with this overwhelming inflammation. I added calcium/D3 and potassium a few months ago, too. Last night I was watching Dr. Pol and he commented that the cow had tremors due to lack of magnesium. I sure have tremors and believed it to be from MS. I started the magnesium today so we shall see.
I had my video call with new MO. He's just lovely. He was happy with Pet Scan and Ibrance. I bought up the colitis in Nov. and now diverticulitis and how ill and painful conditions are. I discussed dose reduction on Ibrance from 100 to 75 if I don't make headway with the Gastro doctors. I asked about efficacy difference between the two, since the drug has been on the market many years. I'm afraid he didn't have an answer for that, but did say I was doing so great that he's concerned to make changed. I do not have very many drugs available as I can not take immunotherapy due to MS. So we'll hang.
Got Xgeva shot no reaction as of now. Except DH had to pay the copay. Thought he was going to have a heart attack. Then down for radiation. It was fine. Met a RN Supervisor in the cafeteria and bless her, she bought DH and I lunch for allowing her to go ahead of us. We chatted for a few minutes and she said she just finished her first IV chemo treatments for breast cancer. I could hear the concern and see the fear. Support is needed for folks at any given time as you just don't know their story.
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Sf-cakes - even though resigning might have been difficult, it’s always nice to have our validated and appreciated. Enjoy the concert! Yo-Yo-Ma is such a talent. Would love to see him. Was able to see Ithzak Perlman once in small outdoor venue.
Irishlove - I started Ibrance at 125mg and was moved to 100mg within 6 months due to severe fatigue. A year later was down to 75mg. I think your MO might want to see more stable results before making that change. Just a hunch. I hope the supplements bring some relief.
More snow for us🙄. Our GD turns 7 on 4/15. We had a huge blizzard on her 1st birthday and many were unable to attend her celebration. Snowed on her 2nd birthday as well, just not a storm. My MIL always said that when there were patches of snow that remained, that it was waiting for more snow AND she was right😂
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Mara That's great that you find ways to capture great savings, love it! Totally understand the trash rant! You are a very conscientious of others and should get the same in return.
sfcakes Definitely mixed emotions when I resigned at 55 wasn't in my plans. Happy to say I am still in touch with all my fellow coworkers. They are like family after so many years of working together and we plan lunches every now and again.I know it is a difficult time but a weight is truly lifted when you don't have to worry about cancer and working. Glad to hear you were commended for your work and you will be missed I'm sure. Enjoy the concert!
goldens Sheesh I shouldn't complain about all the rain here.. but snow…ugh!
Irish Glad to hear all went well with your appointments. Agree we never know what the person in line behind us is going through. That was very sweet of her to treat you guys to lunch. Kindness goes a long way, even just listening to others.
Nothing exciting today but going to accountant for taxes..yikes. Hope it's a better tax year than last. Buster did great with all our company this weekend, he just wants love and attention from all. We'll see how he does alone for a bit today..fingers crossed. HI to all and have a peaceful stress free day.
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Hey everyone. I have a quick question. I started another thread, but thought I'd ask here: Does anyone have numb toes? I'm not talking about the tingling neuropathic feeling. They're just numb. Not all of them—just the three smaller toes on my right foot. I see my MO tomorrow and will ask her. Blood work today. Praying that TMs are down.
Happy Tuesday!
Carol
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@sf-cakes Enjoy the concert with Yo-Yo Ma. I actually attended his concert on 9-11. He didn't cancel, for which I was grateful, but he added additional patriotic songs at the beginning of his concert. It was amazing, and I cried along with the rest of the audience! I was with a friend who had season tickets to the venue (Denver Philharmonic) so we sat third row center, and I was able to see his own tears and sense his emotions. I will never forget it. He is an amazing performer.
@goldensrbest It snowed a little last night but looks like the next ten days will finally be in the sixties…yay!
@sunshine99 No numb toes, but my thighs are numb a lot from the Faslodex shots. Not fun.
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Deleted the trash rant. Called SIL for advice on situation. She told me that once I put out garbage, property management is responsible to clean it up, don't email them, just leave it. She correctly identified my obsession on situations are not necessary, put out trash and let it go. In that case, going back to wee trashcan and follow schedule, that is it.
My mind can get stuck on a particular issue, still working to tell myself that it is all okay. Nothing new in my personality, always been a worrywart. I am also grateful to SIL for making me see all the worry is for nothing. Helped a lot. I will focus more on in house cleaning I may want to do, saving money on food which I enjoy and talking to you guys, not sitting there worried about stuff that in the end will be taken care of.
Have not yet eaten, not sure what I want, probably an egg, bean and rice dish microwaved. Small amount of cheese, leaning toward garlic or something else. Also considering my battered cod. While code being cooked in breville, spray a plate, add an egg, precooked rice, 1/8 cup of bean, and 1/8 cup rice to not get overly full from the egg and fish. We will see how I season, just in the mood for a little of a lot of different things to make for myself.
In pockets for those who need it and hope everyone else has a good day. Feel better after talking to SIL too, really need to chill out and have a flakie as they used to say here referring to a Passion Flakie we had in Canada. Music playing would also be nice as well
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Sunshine, I used to feel toes getting numb before cancer but no cause found except for footwear not have enough padding to cushion my foot. Nothing but a bit of neuropathy for a couple of days post Herceptin.
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Mara,
Sounds like a good plan. Glad SIL was helpful.
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Love the Yo-Yo Ma stories. He's great.
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@sunshine99 the numb toes thing could be an issue in your spine with a nerve that runs down to your toes, maybe? Yes the neuropathy is annoying, but the numb toes sounds like an issue I had years ago with my ulner nerve that runs down to the ring and pinky fingers going numb.. I had 3 elbow surgeries in my right arm back in the late 80’s it turne out to be the ulner nerve that runs through the elbow.🩵
@cookie54 Can you believe all this rain? We had to drive up to North Jersey for my treatment injections today while it poured. What a nightmare.😬
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Hi all you gals here at Mel's Place. Mighty good to hear from you. I watched the Youtube channel for hours and all the tornado warnings that were issued had me praying for all in the path. Tomorrow is our turn. Yikes.
Did my 2nd dose of radiation. I think I'm gonna buy pasties for my down below area. They made me pull my britches down (and underwear) and promised to cover me up with a sheet. Hmm, no sheet when they were done. I've lost most of my modestly after child birth, but this bothers me. Any suggestions? I try to use humor but sometimes just can't muster it up..
Happy to report my two gifts from friends are in bloom. Orchids! Never had luck with them before, so I'm pretty happy. Bottlebrush tree is in full bloom, too. After the storm passes, I'm sending DH to buy a few annuals to fill in some pots looking mangy. I'm a sucker for pansies.
@emac877 Thinking of you and hoping your MO gets you on the right systemic treatment to knock things back. Wish I could give you a big hug in person, but I will send one thru this message. HUGS!
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Irishlove- I would tell them that you would appreciated a little more modesty - it's not too much to ask. Also, maybe dress tape to hold a scarf or handkerchief in place. I'd never heard of dress tape until my daughter had a strapless dress she wanted to make sure started in place.
ETA - could you do some sort of yoga pants with a big hole cut out where they need it?
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@shanagirl Ugh yes this rain is relentless! Plius the traffic up North Jersey isn't fun on a dry day, glad you ha a safe journey. Hope you are feeling well today. Looking forward to some beautiful beach days ahead.
Irish Sorry you felt uncomfortable as we all totally understand. I would definitely comment on the sheet, I also usually try to joke to lighten up the situation. You are one of many who have thought this lying on that table. The techs have certainly heard it before and I would hope they are apologetic. I am hoping they were concentrating on positioning you correctly and forgot to cover you up.. I hope it's a better experience next time. Stay safe and I hope your area is free of this extreme weather sweeping the US.
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Irish, don't blame you feeling exposed when nude at the hospital. I agree on the pasties or whatever will make you feel more comfortable. Seeq, good idea on asking about the yoga pant with hole in the right spot as well, worth an ask.
Thanks to SIL, I do feel much better and slept like a baby. Winds were super gusty so when I go out for the paratransit, will scan to see if can still standing. I do have Herceptin in the afternoon, This month is pretty busy for appointments as regular MRI next week then an Echo and Herceptin same day two weeks after and finally an appt with RO to go over results of MRI, hopefully the bleed is still stable or smaller, not too concerned at this point. May only has one appointment which will be a nice break.
Not sure what I want to eat yet, thinking about beans and rice before the hospital and something else afterward for dinner, might pull out some hotdog and make an omelet sort of thing. Need to do some laundry and excited to use my mini knapsack to carry water and a charger in case it takes a while at the chemo suite. My wee knapsack will be better than the crossbody bag I used for that before as balance will be more even distributed as I already use an over the shoulder bag to contain my wallet and phones. Edited to add, will chop up beans in some BBQ chips for the texture I enjoy, still have rice as well with a cheese topping. I may also season the rice with a taco seasoning as well. That should be a good hearty breakfast, tonight looking to have eggs with fish mixed in, sounds bizarre but I think would be good, cook each up separately and combine them, possibly add some mayo and ketchup as well, we will see later.
I hope all have a good day and in pockets as needed.
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Hello ladies ~ I’m having a hard morning filled with grief over my mother. I can’t handle the weight of her loss. I think it’s getting harder as I go. This weekend is her memorial dinner and some cousins of hers are coming. I’m going to take one look and loose it. They know I’m her youngest and the closest to her. They realize how I’m struggling when we talk. I just want it to be lovely and honor her the best I can. After this is over. I don’t know where I’m going to channel my grief. I’m still grieving my cancer diagnosis 8.5 years later. I can’t handle more grief. I’m sending love out to you all and hoping for good results and quick MRIs! Hugs!!!!
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@irishlove Wow. They just totally disregarded your Sense of Dignity and modesty. How vulnerable it must have felt for you. Si’ve leaned. To be assertive and mouthy with these techs. With needles and blood draws. But what you endured makes me feel steamed and now I will be ready for any kind of situation like that.🤬
@cookie54 yep another dark day here at the Jersey Shore. I don’t even feel motivated to do anything on these dark torrential rainy windy days. I feel sorry for my little Pugs. They refuse to go out in it to go potty, but keep holding it forever until they are desperate like in the middle of the night. They wake DH up to take the downstairs and. Let them out the back yard to finally go. Poor guys.🥹
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I posted this on Fasoldex Girls threads and cross posting. Here in Mels Livingroom😊
Good Morning Ladies (& Gents?)…… I got my three injections yesterday. Xgeva in the arm, and Fasoldex on each sides of the “Tush” as my Oncologist calls it😉…..very. Itchy today over the lumps that Fasoldex injection leaves. On my butt cheeks. I’l; have to use the Bactene spray, it’s the only thing that stops the. Itch. This weather is making me feel very bone achy too. I asked my Onc if he. Thought I’m NEAD because my Scans are always stable. He said “no you have stable scans but I won’t. Say NEAD”……
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Mel, sending warm thoughts on this day when you are still struggling with grief. Each day you get through is handling the weight of the of your grief. You can get through the day and no shame in tearing up or crying, no shame in it at all but don't take the tears or sadness to allow your mind to tell you that you cannot do this, you can and you will get through this day. One day, the grief will give way to memories that you have of her. I have been there after Mom died in Jan 2019. Now my mind will give me a thought of I miss Mom which I am replacing with I love Mom.
I have been revisiting the Twin Peaks TV seasons 1 to 3 and the FireWalkWithMe movie and having some really interesting dreams, forgot to mention that earlier. Will have to find more movies or TV once the Twin Peaks stuff subsides in my dreams, not nightmares, I usually save characters from the baddies and dream what life would have been like after for the characters.
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Shanagirl, I consider NED and stable to be just as valuable as one another due to the fact that neither require treatment to be changed or added too. My MO says I am NED from the neck down as nothing has ever shown up post mastectomy, initial chemo, rads and Herceptin, almost 9 years for me now but stable should not be sneezed at, enjoy it.
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Mel I am so sorry to hear you are struggling with such grief right now. I send you virtual hugs and hope that your mother's memorial brings you peace and a time to remember and honor her with good memories.
Shanagirl - I was never told NEAD either. For four years I was just told my scans are stable. I agree with Mara, I'm not sure what the technical difference is but I'm happy for you.
Irishlove - That's terrible they didn't cover you up. I would feel awkward too! When I had my sacrum radiated I had to pull my undies down just to the top of my pubic area but I was allowed to keep them partially up and then a sheet was put over as much of it as could be allowed. It seems they owe you that much.
This is going to be a challenging week. Yesterday my MRI showed that I have a progression of leptomeningeal disease. I woke up this morning still a little shell shocked and sad. I have an appointment tomorrow with the RO and also a chest/abdomen/pelvis CT. I probably won't hear from my MO until the results from the CT are in. Right now I'm trying to refocus and find out, as best I can, what the next steps are. Oddly enough on the Enhertu I had a partial response where some of my brain mets shrunk but two got bigger and most were stable. I've only had 3 infusions of that so I'm not sure what the plan will be yet. My faith is in Jesus and I am leaning on that. I also appreciate the support from the group as you all have been there for me since day one of MBC these last 5 years and that has been invaluable. I will keep you updated as I know more.
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Mel, the one thing I read after my husband passed that stayed with me was this: You will grieve with more love than pain over time. I'm finding that to be more true, but of course there's still pain. I think of the pain as a reflection of how strong our love was. It's so hard. Sending you hugs.
Emac, I wish there was a way to be with you as you face this next challenge in this awful illness. Know that I am thinking of and praying for you.
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Hi! Went back again a few weeks so I will catch up a little.
Tina2: I remember you from when I was first DX'd and found a spot on the couch in Mel's living room. If I recall correctly, you were doing so well. I am so sorry to hear that things have turned "ugly" on you. This is a cruel disease.
sunshine99: I have numb little toes on both feet, more pronounced on the left. I assumed it was from Taxol. Some say Herceptin also causes neuropathy. MO says 'it shouldn't", but four years of H&P only and the numbness is on all my toes. I take alpha-lipoic acid/VIt B12 and it seems to be keeping the neuropathy in check.
mel: What a terribly sad time you have been going through. I lost my mother when I had just turned 18. Shortly after that my father moved to the UK, leaving me on my own and my sisters scattered across the country. Mom and I had just gotten over my teen-age hostilities, door slamming, screaming "I hate you" . We had started to talk to each other like civilized adults. I would so much like to have gotten to know her better, to have had a long and loving relationship. Be women speaking together as women. Bless the time you had with her. Remember her with joy!
Shana: Stable is GOOD. May you remain so.
Happy dance for everyone with good scans!!!
Cookie: More pictures of Buster please. I really want to thump his ribs and tell him what a super dog he is.
My special needs cat is coming along so well. I woke this morning to find her under the covers, lying right alongside my chest, her head on my pillow. I had a cramp in my calf but I didn't want to jump out of bed and walk it off right away. I wanted to enjoy the moment in case it doesn't happen again. My husband is jealous that she (he says) "Likes you better" I just say he should give it time. I reminded him that our last cat, Aelfric, always laid on him at night and I didn't pout. :-)
Buds are on our lilacs and the bluebells are popping up alongside the house. I am going to order a cubic yard of garden soil to I can have more success planting a flower bed at the front of the house. Right now it is pretty crummy. The foxgloves do well but others flowers struggle. There is enough light and I plant flowers that like partial shade. Come May I will start the back garden that gets full sun and get it prepped so I will be ready to plants tomatoes, pole beans, and sweet peppers. I grow my herbs in pots on the deck. I hate going back to store bought tomatoes when the season is over.
Wishing everyone the best. Good scans. No pain. No anxiety. Happy relationships. Good weather.
Mara: you and I are on the same Herceptin schedule. Mine is tomorrow. I wish I could walk or bus. Parking is always an adventure. Like a shopping mall on Christmas Eve.
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Mel - Nothing but hugs and warm thoughts for you today! I'm sure this is weighing much more heavily on you right now with your mother's memorial coming up and people coming from out of town. Real additional stressors for sure. You are doing a wonderful thing for your mother and trust me, trite as it might sound, "It gets better!"
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Emac, I am saddened by the leptomeningeal disease showing, glad rest of the brain is cooperating, keep us posted on treatments suggested etc and just one step in front of the other and I vote not to look up or google this development, you could scare yourself to death. One step in front of the other as said before, one moment, keep moving your body if possible whether you are in bed, chair or walking. I am in your pocket sending warm vibrations to help you find some peace. Hopefully your doc can make some sensible advice for planning treatments or other modalities as well.
Well, took the Paratransit there, waited about 90 mins or so before infusion. Herceptin was fine, had a gingerale and for some crazy reason, I chose to walk home. I have not attempted that since last summer but it was nice and cool. Listened to music in one ear and did not think of anything, kept eyes on feet to see if near a big gap in sidewalk, no stumbles either. Was pretty tired by the time I reached home, planted by butt on the couch. Now I will say that I do not think this will be regular and will never attempt in any sort of hot weather but good to know can do some steps as needed. Going back to considering arriving at the hospital early and walking around first, we will see, wound up with 4000 steps which is not a lot but good for me. Next appointment is MRI on the 10th which is fine. The most amazing part is my mind did tell me that I was tired, even though I felt it. Mind over matter I guess.
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