My Husband, My Life, My Love, My Family, My Cancer
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Shana Congrats on stale!
Hi Chelleg it's nice to meet ya. Glad you decided to sit in the living room, it really is a wonderful room full of amazing kind people! We all get you and are always here for you❤️
Hey Kitty sounds like your lining yourself up with a good support system. Fingers crossed and pocket prayers for a good MR report.
Sunshine Good luck tomorrow with GI. Sorry to hear your still suffering with the cough.
Seeq love our advice,years not months, in your pocket as well for stable results.
Mara Glad your feeling good today, hope you enjoyed your mall walk.
Molliefish Sorry to hear about your friends, this disease is unfair on so many levels!
Waving hi to all and sorry for those I missed. Always reading along and like others some days my brain is on overload.
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awe,y’all got me feeling all warm and fuzzy 🥰
Thank you!!!
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DH going in tomorrow for a suspicious growth on his arm. Hoping it’s just a boil or something like that.
Like so many here, it’s always something
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Finished my CT scan this morning. I am still waiting for results to post to the portal so I am catching up here. Lots going on with everybody! I am enjoying all the pet pictures too❤️ It's so hard to lose them. I grew up with dogs, horses and livestock but don't have a dog right now because the days I work I am gone 13-14 hours and that's a long time for an animal to be alone. Maybe some day when I can afford to go on-call.
This breathing thing is still an issue and seems to be aggravated by activity. My labs this morning are pointing to an infectious process so I am suspicious of walking pneumonia. I got several loads of laundry done and slept in between loads but that's all I had energy for. My visit with the neurosurgeon was good news, the fracture is stable. I got x-rays done flexing forward and backward and there was no unusual movement so no risk to the spinal cord. He did offer a fusion from T8 to L2 with a cage around the fractured vertebra. That surgery sounds horrendous and there is no guarantee that it would help so I was a solid NO on that. I'd have to be a whole lot worse off to even consider it at this point.
Hugs to everyone and welcome to the new people and the quiet ones.
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chelleg: Hi. Pull up a cushion. Lurk all you like but do feel free to post. We are all here for each other. What chemo will you be getting? I hope it is not too rough on you but come here to cry, whine or scream.
I am also shy and a total introvert but this place is full of open arms and open minds.
irishlove: I need to have a scrap of paper handy and jot things down when I go back and read all the posts I missed over just a few days. I would like to address each and everyone.
Thinking of all of you
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Chelle~please make yourself at home and know we get what’s going on and understand the feelings that come with it. I hope whatever. Chemo it is. It knocks the cancer out of this world. You are in my thoughts and heart. Love to you !
elderberry~ never would have taken you for an introvert, you’re always so open and caring.
emac~ walking. Pneumonia is time to get some rest. Please be careful of that.
Cookie~good to see you too.
mae~ I think you will remember Chelle from back before keetmom days. Hope you’re good too! Hello sunshine living, intolight , Irish , Candy , Mara, Tanya , rk, cm2020, and anyone else I’ve forgotten. Goldens , kitty.
Anyone else ill. Be back!0 -
I remember Chelle. Glad you are back but sorry to hear about your progression. We are here for you.
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Chelleg, I am sorry to hear about progression, that is a tough road to hold.
Kitty, sounds like a good idea to have some household support as well as the fall detection as you are dealing with seizures.
My situation is at a bit of a standstill until an MRI can be scheduled. The Community Care Access Team is coming next Thursday. I really need someone to give me someone to assist and getting me able to get up if I fall. If I have that then that is great. Until both things are under way, I am chilling out and not worrying anymore. Keep DB, SIL informed, they are coming to the appointment post MRI whenever that is.
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@mara51506 , I’m glad you’re getting help!
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after reading here, I realized I have not pursued the LifeAlert devices which could be helpful if I fall while alone. I called for information last night. Will see if that is a new option. DH is home with me a lot but not always so seems like a good option.
Thank you for bringing this device up at this point in time.
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Dodgers, sounds like a good idea to have. I would have to see if I can fit it in my small budget as that is a good idea to have for safety.
I slept decently, dreamed about being in House of the Dragon, just a background person riding a dragon, it was entertaining. Doing some laundry now, eat some breakfast and take the bus up to the mall for some walking, come back home. Need to have a bean type breakfast as well with some rice for the carb portion, canned meat this time since I forgot to pull anything out of the freezer, probably split some turkey between myself and the cats, they like canned turkey mixed with a bit of wet food in between dry foods. Weather is nice as well so that is good.
For anyone struggling, I am in your pocket and I hope everyone has a good day.
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I thank you all for the warm welcome! I’m not sure which chemo I will be doing. The nurse is supposed to call me with the particulars.
I have hydronephrosis of the left kidney due to a met pressing on my ureter. I need to see if I can have a stint put in my ureter to optimize kidney function. Oncologist wants this done before chemo begins. She has already scheduled me for July 19. It gives me a little time to prepare for this new lifestyle.
I can’t figure out how to post my information so here goes
Dx.Metastatic de novo 7/2015
Er+pr+ her2-
Tamoxifen
Hysterectomy 2018 progression to ovaries
Ibrance/letrozole
Progression to retroperitoneum left side
Er-pr-her2-
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Chelle, I think I remember you from way back some years. Man, progression sucks but you've got all of us to help you through this next stage. And it sounds like you have Real Live Mel in your life too!
Emac - good call on avoiding a fusion if its not needed at this time - big surgery and big recovery.
Hip is improving daily with the new drug - grrrr oncology was right again. Damnit just once I want to be right that overdoing it exercising = overdoing it, not cause cancer. Ah well, Im getting along more and more without the cane, and yesterday I was baking up a storm for the first time in ages but ho man I was I tired. I think my right leg is fully back in the game after a few years checked out. On the downside, I have a met on my ischial tuberosity (the bone you sit on) that is pissed OFF and likes to remind me it is pretty much every time I sit or lay down. Wish I could trade in my pelvis for a new one, this ones busted.
Stay safe everyone!
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Mara, I love the thought of you riding a dragon! Keep chilling out, as you say. Relax as much as you can.
Emac, so glad to hear your fracture is stable, and yikes, I would've passed on that scary sounding surgery, too, unless it was absolutely necessary.
I have one more day of work before my six month medical leave, which is my trial run to determine if I'm making it permanent - which I almost certainly am. Got a fantastic seat to see Madame Butterfly at the opera this weekend, and I am booking a trip to London in the fall to see several theater shows that sound wonderful. Will be doing this alone, but my sweet husband will be with me in spirit, so I won't be lonely. Just probably sobbing at the opera, lol.
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Hi everyone. Quiet night tonight, again no rain. The grass looks brown. If I had the energy or money, I'd rip it out. But of course this city would probably fine me as they insist on green grass.
The two types of rashes are looking better with cortisone spray and ointment. The itch has stopped. I found a great PT on youtube that specializes in lymphadema and started her exercises. They are helping a bit. I really do not want to call GP and wait for referall and insurance approval and have to travel an hour for therapy, if I can help it. I have horrible pressure in my head but no dizziness or confusion. Guessing stress or MS related. No headache but obviously when you are new to stage 4 b.c., every thing that aches makes one worry.
Thinking about you all and caught up reading your posts. It's amazing how comfortable it is to exchange our trials and find such compassionate responses from folks all thru this connection. I suppose like most of you, I do not attend any support group. Happy to have you all as my support and hope I can offer up the same. Waving to each and every one of you and sending good thoughts and prayers for a peaceful day.
@chelleg Hi sweet lady. I'm sorry you have progression and it sounds like your docs are on top of it. Did I understand that you are now triple negative?? I guess I don't quite understand how one switches from er/pr positive to negative and that tumors in one area can be positive and tumors in others, negative. Is this from treatment or unknown reasons? I'm glad you are good friends with Mel, she is so sweet, too. I hope you find the support and love from these great ladies. We truly are not alone in this fight.
@nicolerod Thinking of you after reading your post on clinical trials. I understand what you are saying about hope. It is the one thing we try to latch on to and it betrays us often. It's like a roller coaster ride, and frankly I prefer mundane rides.
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Got the results of my CT and I am popping in here to ask for a little pocket duty for tomorrow. The scan shows a new 8mm pulmonary nodule in the right lower lobe. Sounds like it's in the pleura. I understand it to be a small tumor but with the pneumonia I am also hoping maybe it's inflammation and not a progression. I see my oncologist's PA tomorrow morning so I will update. I am scared but I'm trying really hard not to be.
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Emac - jumping in your pocket for tomorrow's appt.
Mara - you ride that dragon - what a fun dream! I noticed the melatonin was giving me really vivid dreams. Waking up, I'd have to think for a minute to figure out if it was real or I was dreaming. I guess you don't have to worry about that when you're riding dragons. Lol. I'm glad you're getting checked out and getting some assistance; I've been worried about you.
SF-Cakes- I hope you enjoy your retirement. It sounds like you're off to a good start with the opera and your travel plans. When I visited my sister in London, we were doing some light shopping, and it ended up as a walking food tour. A little snack here, another snack there, lol. I do remember a wonderful little cheese shop with a walk-in cooler full of different cheeses, as well as a little dining area. I don't know if there's any place like that in the States.
Kitty - I've been meaning to say I'm sorry you found yourself back in hospital, but it sounds like you're working out a good plan to be able to go home. I hope it all goes smoothly for you.
Chicagoan- I'm happy you're finding fulfillment working more.
Welcome to Chelleg, and also irishlove and shanagirl. I know you've been here a little bit, but I haven't been very chatty and neglected to welcome you.
t's very hot here (108°F), but at least it's dried out a bit. We have cold front coming in this weekend that should bring us down to the low 90s and may bring us some much needed rain. My daughter is coming up for the holiday weekend. It will probably be our last hurrah on the boat for the season. It's early, but we are about to go on a cruise with the family, then dh has his first knee replacement right after we get back.
I got my scan results - not great, but not terrible. It looks like I might have a little spot in my liver again. MO said it was very subtle, and since my original mets were in my liver, we're going to wait a bit and scan earlier this time (3 months) to make sure it's really something growing there. That's good, since dh has his surgery next month. His second knee replacement is scheduled for November, so I really would like to get us past that before I have to mess around with this stuff too much. On a side note, it was a little frustrating that the radiologist commented about not having a pretreatment, baseline scan for comparison. I provided the original MRI and PET-CT when we moved here, so they should have it. I'll work on that - seeing if they actually looked to see if they had it on file, or providing it again, if necessary. It's just one more thing. All-in-all, life is good, so I'm not complaining...too much. ;)
I know there are more people I'd like to respond to, but I haven't been keeping up. Sending hugs to everyone in the room. We can all always use one.
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Good morning to anyone up. It’s 4:20 AM and I’ve had a bitch of a night, not being able to sleep.I’m having all kinds of Side effects this time from Monday’s injections of Xgeva and Faslodex.,coughing, acid reflux, headache, nausea, abdominal pain, diarrhea.lots of bone pain in my spine & ribs dizzy all day. I feel so damned weak and tired, but I just can’t sleep. So I thought maybe someone was also up and awake to keep me company in the living room. While Im here I just remembered about my diagnosis in 2019 during my mammogram on R breast and after core biopsy, they diagnosed me with LCIS. I forgot to ad that to my medical bio. I’ve been sitting here in bed waiting for the next shoe to drop. I really hate BC.
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oh well, I’m really feeling sleepy right now. I guess I’ll try and sleep.🥱😴💙
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OMG I have missed you all so much! Was out of the country for 10 days (bucket list trip) with only my phone for communication and random, spotty Wi-Fi.
SF-cakes, so glad you are doing and planning good things for yourself to enjoy. I believe that always having something to look forward to helps my mood, and a trip to London, my favorite city, would certainly be high on my list. There are some sisters who live in London who I hope will chime in with recommendations for you, but I can add that I have had a lovely tea at Brown's Hotel. I also recently found a website/blog (not sure I know the difference?) called Ianvisits.co.uk that seems to have lots of good info.
emac, think you were very wise to avoid that surgery with the metal cage. My sister had that exact surgery for non-cancer related problems and it solved nothing. After a few years of even more increasing pain post surgery, she had an even more complicated surgery to remove all the hardware. In your pocket for tomorrow, hoping that it's not progression.
seeq, hoping the liver shadow turns out to be nothing. Enjoy the cruise with your family.
Kitty, glad you're finally getting the support you need, and hope things improve for you.
I'm almost afraid to ask, but has anyone heard from Pat/Sadiesservant?
Chelleg, welcome to a warm and comforting safe space. Like Irish, I do not have any other support group, but find this one an amazing resource and blessing.
I think of all of you every day.
Hugs to all.
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Shana Ugh, so sorry to hear it was such a rough night and you're dealing with all the crappy side effects. Yes we all HATE this freakin disease😡🤬 I hope you are getting some sleep now, Hugs.
sfcakes I'm so happy for you! That sounds like a wonderful plan that you are soooo deserving of.
emac Here for pocket duty ,many times nodules do appear with pneumonia. Sending positive thoughts and strength for your appointment today. Hugs
seeq Glad you're getting some relief from the heat, gosh that's hot! We are dealing with this smoke again from the Canadian fires, hoping it doesn't trickle over into the holiday .Enjoy your weekend with your daughter. Hoping the small spot that is showing is not related to mets or even that with the PET comparison it changes the report.Ugh so annoying to deal with getting an addendum to your report, just one more thing to do.
Chelleg Sorry you have to deal with getting the stent prior to start but glad they are taking precautions for the kidney. I'm a triple negative gal too and since 2016 I have seen several more drugs added to the arsenal to treat mtnbc. Just wanted to send you a bit of hope🤞
mel Hope your mouth has been behaving and you get to enjoy some July 4th treats. Let's hope this air improves by then.
Coffee cheers to all in the room this morning, wishing you all a peaceful day🌼
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@emac877 — reporting for pocket duty. Hoping the small spot is related to inflammation and that it will disappear quickly.
@shanagirl - have you tried a Claritin for a few days with XGEVA? For me, it helps settle the bone pain. Hope tonight you will find the comfort of sleep.
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totally Agree with dodgers about xgeva. I take Claritin for a week before my shot and I get no side effects at all. The bone pain is a bitch.
Pocket duty for emac. No word from Sadie. 🥺….
Love you Chelle !!!!
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@cookie54 @dodgersgirl @micmel
Thanks. I literally fell into a deep sleep after 5:30 am. I don’t know if it was the Xgeva or the Faslodex but I definitely had every single side effect all night. The bone pain has been bad for days. Yet I do take daily Loratadine (Claritin) for my allergies. I’m not sure if the cervical neck stenosis was acting up or if it was the bone pain side effects. I have an appointment with my pain management neurologist next week. My Onc told me to go ahead and the injection for the pain. So that will carry me through till around November.
I also have a question for you all. Does anyone have a LCIS included with the stage IV diagnosis? Can. It progress?
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emac Pocket duty to find out about the nodule today.
Seeq, stay cool as much as you can. I can understand having to check small spots as I have had some early MRI for what looks like a possible met only for it to disappear. In your pocket in any case.
Kitty, hoping you can get out of hospital with your plan.
Shana, I am sorry for the lack of sleep, I do hope that you were able to get at least a couple of hours of sleep.
Sondra, glad to hear your hip is improving daily, always good to hear even as you deal with the pesky met making it painful to sit.
Chelle in your pocket for the ureter being but in this July.
Sorry for those I missed, started to use those sticky notes on the PC, makes it easier to get to more people now that we are busy.
No dragonriding last night but slept well. Laundry is done, DB taking me shopping tonight. He has been checking on me a lot, I do feel just fine and just watching my step inside as much as I do outside. We are going to Costco, that will provide some good walking. Having some ground up beans, wheat bran with cheese microwaved along with an egg made in the sandwich, have to say that is my favourite. Other option is to take the beans/bran/egg and make a sort of egg bake type thing, decide if it should be sweet or savoury. We will see what is chosen, marching on the spot to music and playing games for the rest of the day til going out tonight. Keeping the doubts out of my mind about the other stuff. Biggest desire I have is want to get up after a fall. I can deal if the brain is not in good shape but since I have not bee told that, no point in worry about it.
I hope everyone has a long day and pleasant night as well.
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Shana Had the nerve to treat myself to a Dunkin on the way back from RO this morning lol. Love my coffee! So LCIS was in your path report? To my understanding LCIS is in the category of being a precursor for possible breast cancer. I had ADH which is fairly similar prior to being diagnosed. Glad you caught some zzzz's.
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So breakfast was interesting and useful as well. I chopped up 1/4 cup black beans, wheat bran and some shredded cheese, came out like ground beef. In another bowl, 1/4 cup pancake mix, 2 eggs, chicken seasoning and maple seasoning. Dumped in the bean mixture, whisk up, comes out fairly solid, cooked in the sandwich maker. Takes around 5 mins to cook and it comes out like a heavy bread. Since I was make a sweet dish, I spread butter on it, cut it up and added maple syrup. Was really good.
Figure can use the same sort of recipe and just add stuff to make it savoury, taco seasoning etc. Might be interesting.
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Popping in to Mel's living room for a short visit. Reading all the posts and definitely will miss everyone.
S.F.-- your retirement plans sound wonderful. A trip to London to see theaters ! No you won't be alone.
Emac- in your pocket for tomorrow
Mara- glad you are feeling better
I know one of you ladies is dealing with swallowing problems. My sister has the same problem and she goes to have her esophagus stretched. Unfortunately it has not helped her a great deal but she still has it done. (actually went again today)
Kittykat- happy to hear of the plans put in place so you can be at home
Many people are dealing with excessive heat and people dealing with smoke from Quebec fires. Luckily the wind has not brought it to the island but I saw pictures of New York and Pittsburgh. Everyone stay cool and safe.
On Saturday we had a party for special son's 30th birthday. Had 23 people from other group homes attend. He was so proud and happy 😊 His real birthday is on July 4th but husband and I will be flying to Ontario for daughters wedding on July 7th. Would love to take my son but major interruptions to the routine would be too much. A lot of planning went into the wedding so while it will be a very long day for me I am so happy for her. We love our new son-in-law.
I have also read sad stories regarding our dear pets and how happy they have made our lives. Mel, it would be wonderful if you could get a dog.
Waving hello to all new members of our virtual family. Stay strong. We are in this shit together. To all a big
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To all a big hug! Losing my mind
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