My Husband, My Life, My Love, My Family, My Cancer
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Mara please, please, please go immediately to get checked out. Your experience is identical to my friend, Sherry's. She fell a number of times and couldn't get back up. Not because she physically couldn't (she was in amazing shape) but because her brain couldn't communicate to her body how to coordinate her limbs to get her off the floor. She also struggled with forming words during these episodes.
She finally had scans and found that her cancer (a soft tissue sarcoma) had metastasized to her brain. They were able to do surgery and she was up and walking in less than a day.
I know you've had whole brain radiation in the past. It may be time to zap a couple of the buggers again.
Please don't wait. If it is brain mets, they will only get worse.
Trish
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I don't have a PCP at this point, I did phone the cancer clinic and asked for an appointment with them so they will phone back. Next thursday I also have the Care Coordinator. I just want someone to help me get up on my own so I can do it everyday. I would like to be sure that my brain is not causing problems with MRI to rule out dementia, more mets or whatever. I will just wait, taking it easy today and will resume mall walking tomorrow.
Dodgers, I am sorry you are dealing with falls as well, in your pocket.
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I am so far behind in reading posts. I went back what feels like weeks.
So sad and awful to read stories of traumatic deaths of beloved pets. How horrifying to find a pet torn apart by dogs or hanged. Then there is the inevitable death of aging or sick pets. Last Tuesday we had to take our Aelfric on his last car ride to the vet. He was in declining health and his last bloodwork indicated cancer but he was doing alright. He started to eat less and less but the last two days he ate nothing, threw up water and slept inside shopping bags. It was time. The place feels so quiet even though he never made a lot of noise. A house doesn't feel like a home without a cat. For the first days after he was gone I still found myself taking a quick peek into the bedroom to see if he was there on the bed, or expecting to see him come around the corner of the couch.
Mara: I am concerned about you. Fearing falling down and not being able to get back up is terrible. Do follow up with specialists.
Candy: So true. Having MBC doesn't spare you from all the other issues that can befall a person.
Sunshine: I love the photo of a "person head" and a "dog head" peeking around the tree. I laughed..
Thank all of you for animals pics.
illimae: I have a friend who thinks I am a bit bonkers to have a crow family hang out, one who taps his bill on the kitchen window to let me know he is there. I don't have every crow in the neighbourhood coming over, just Jake, his mate and every summer we see a fledgling. We are on the flight path of a large population of crows so every night the sky is full of crows flying back to their roost. Your husband's deer clan would blow her mind.
To everyone else: even if I don't address you directly, I read your posts, I put out all the positive vibes I can and am giving my biggest, warmest virtual hugs.
I find the struggles and losses of so many of our sisters overwhelming at times.
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Irish, what a lovely poem. I grew up with Airedales and DH and I have had three as rescues. Each one was so unique and we loved each one of them.
Mara, I hope you’re having a good day and that you don’t have any falls. As Candy said, can you contact your PCP? Sometimes, I feel like if I have to contact ONE more doctor about ONE more thing, I’m going to SCREAM! I’m seeing the pulmonologist today, the GI PA on Wednesday, and am getting a brain EEG on Thursday. Enough, already! At least I’ve not had any more vomiting after swallowing pills.
Waving “hi” to everyone. I finally updated my blog this morning. I don’t know why I waited so long. Life just got in the way.
Carol
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@mara51506 I’m glad that you’re in touch with your care team so that you can find out what’s going on! Scary episode!
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@mara51506 — keep posting what you find about falling. It helps me a lot with options. If I fall and land on the floor, I can’t get up without strong firefighters to get me up. So helpful but embarrassing, too.
I think most of my wobbly chemo legs fall around nadir days on each 21 day chemo treatment (days 4-12 seem to be the worse). Hemoglobin drops low so not getting good oxygen to my muscles. And after all the steroids during the first days of chemo sending Blood Sugar higher than normal, my BS drops into the 60s when steroids are done which also makes walking scary. I use a walker now and have a commode chais which is closure to the family room. Sits higher and has arms to push up from which helps a lot. One day at a time
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I won't let them lose track of my needs. I need to be able to start with getting up when I fall. It does not happen very often but I want to practice getting up. I want to make sure my brain is not damaged in anyway due to cancer or anything else. The getting up will be the most helpful. We will see what happens.
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Elderberry, progress is slow with the wild raven Edgar, he’s very cautious but I caw at him when I put some cat food out for breakfast and he does come to eat it shortly after. He also doesn’t fly off when we talk or move around inside like he used to. Hopefully, he’ll land on the deck when I’m outside, that would be awesome.
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there is so much to comment on. I’m in talks with DH about getting a dog. I’m taking the topic slowly. But I really want one. Not a huge dog or anything. I realize I will be the one who has to take care of it. Which is fair. I just know I want one. It would go a long way to brighten my days. I guess we will see. I’m loving all the posted pics of dogs and that awesome tree. Kitty,Sadie,Shana,Mara,Mae,Chicagoan,emac,living,into,sunshine,AJ,rk, Tanya, Trish, dodgers,elderberry,to anyone I’ve missed I’ll be back. Hugs to everyone snd pocket duty for anyone …
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Micmel, we have a Maltipoo (a cross between a Maltese and a Poodle.) She doesn't shed and is non-allergenic. They are bred to be comfort dogs. She loves people and always wants to be with someone and spends a lot of time on my lap. At one years old she weighs seven pounds. She is very smart and was easy to train. Just a thought. I know…she is not a rescue dog. But we had very specific needs with this dog. Just a thought. (That is my daughter with her.)
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adorable !! That would be perfect. The perfect size, everything. Thank you for sharing. It would be a perfect match. For sure .. the dog is beautiful……
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I’m having a hard time and need some help from my friends. Within 2 days of each other I was advised of the wives of boys that work with me had been diagnosed. One I didn’t have much info, only that she was having a bi lateral mastectomy June 13 after being diagnosed on 01 May. She appears to be recovering well and I was told that she opted for the double and will not require chemo or rads if the pathology one one lymph node is clear.
the other is more heart breaking. She is 37 ( they both are) and is er/pr- her2+ but had one lymph node that was bothersome. A CT and MRI resulted in a secondary CT last Thursday which resulted in a diagnosis of cancer in her liver. They (she and hubby) went to the oncologist visit this afternoon and he told me later the news wasn’t positive.Fucking right it’s not positive. She has metastatic breast cancer with three young kids at 37. What can I do? How can I help? I feel like crap, I feel useless. I know it’s not good news. Help me help them. Thank you for listening, I know it isn’t easy for you either.
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Hi everyone. Quiet night tonight, hot but no storms. I actually cleaned house and cooked and felt like I could accomplish something to feel worthwhile. Like so many of you, I love my gardens and water in the a.m. and p.m. due to the heat. Those storms come and go and don't give enough rain. DGD's pumpkin is now 14 inches in diameter. Sunflowers are pretty much gone with exception of one large bush, I'm guessing a perennial versus annual. This is our first year with sunflowers growing.
Thinking of everyone with doctor appts. and testing that all goes good.
@illimae I love your Edgar story. That' my DH's name. I had a baby dove at the feeder today!
@mara51506 No, not everything is cancer. I blamed my feeling poorly this last year on MS. Let my guard down as in my case it was MBC. Now the last two weeks I blamed everything on cancer and guess what, it's MS related. Can you find a neighbor to walk with so you are not alone? Mall walkers is a good program where folks meet up to walk in a mall or shopping center. Hope you get things sorted out and your DB helps you, too. We all need family in our corner.
@intolight Oh your baby is so adorable. No need to defend a nonrescue dog, she is just perfect for you and that's all that matter.
@micmel It would be such good company to add a furbaby. We train ours quickly to use doggy doors so just one walk in the morning is necessary. I'm sorry for the traumatic loss of your pup, Yukon.
@dodgersgirl A journal would make sense to see your most vulnerable days. Maybe a neighbor can check on you during those days. I sometimes wonder if we have more resources available thru cancer centers that we just don't know about and could help keep our independence?
@elderberry Oh I am so sad for your loss. Looking for a kitty and expecting them is so heartbreaking. I hope you find sweet memories to bring you thru this loss. We have crows come every morning for dry cat food. I swear they know where my bedroom window is, because they sit right outside making a racket till I go feed them.
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Molliefish~ I’m so sorry about your friends. I had my cancer go to my liver. She is young and strong. Depending on how big the tumor is they can operate on the liver. I had a resection. They cut the tumor out and I have been nead since. Have her find out the location of the tumor and find a doctor that will get in there and take it out with curative intent. Remind her there are many treatments out there for women like us. Since I was so young at my diagnosis. They are more willing to push more. The liver grows back. Once again I’m so sorry for the news you received today about your friends
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Molliefish - the most useful advice I got when dx'd de novo with liver mets was to think in terms of years, not months. I'm HER2- and have been on my first line treatment for over 3 years, NEAD for about 2 1/2. They have some really great drugs for HER2+ (Mae, Mara, others). It's so flipping scary in the beginning, and Dr. Google does not help - so start by thinking years, not months.
I've been reading along - worrying with you all and cheering on from your pockets. I had my 6 mos blood draw and scans last week. Bloodwork looks good...except they forgot to draw for CMP, so no LFTs. Grrr. I get my scan results at MO appt tomorrow. The report came in today, but the doc was out for a family emergency, so they wouldn't release it. Double grrr. I've really got to get that straightened out.
We've been in triple digit temps for the last few days. Expecting 110° or higher this week and no rain, which we need.
On a brighter note, my dd, dsd and gs visited this weekend. Dsd and gs stayed on a couple extra days and we've been having fun.
Waving and sending gentle hugs to all.
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My baby sister (she’s 58) is visiting and listens to my MBC stories. It’s nice to have her around even if for a couple of days!
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Molliefish, your friend with the has the same ER/PR -ve and HER2+ve I do. There are many drugs that can treat that treat the HER2 positive which is good new. I have been going for 8 years now, 7 of them spent with brain mets as well. It will take time for her to sort of settle in the business being treated. If I was to think of what I might want, I would think an offer to do some light housecleaning, laundry or even just going for a straight up walk would be valuable. She will know you understand a lot of things re cancer and I know you will also be able to let her guide the convo to where she wants to let it go. You can ask what you can do as well but sometimes it is good to do something you know is valuable. If you have a car, go to the first appointments with her. Tell her about those of us who have been long term survivors, especially me with the brain mets. In your pocket and your friends pocket too.
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I am feeling pretty good today. MInd is being kept off the falling and what ifs for now. I know what I want and need. Planning to mall walk post breakfast, breakfast just a couple of hashbrowns and eggs with cheese shreds mixed in. Laundry also under way and fighting with internet, just need to reset modem which is no problem, that is really about it for me.
Have a good day all and in pockets for everyone who needs me. Thank you for looking out for me as well re the falling. I imagine it may take awhile to hear from the RO about getting my brain checked out. I plan to tell the person next week that I need training with someone there to get up off the floor. Until then, life goes on as usual. I also don't plan to get rid of the treadmill, I can start at a slower place until I get used to it and hold on to it.
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Hi all. I'm sorry some of us are having such tough times - both with our own cancers and cancers in our friends.
I saw the pulmonologist yesterday. Nothing earth-shattering. He feels the stuff on the CT and the coughing is related to micro aspiration. I'll see the GI PA tomorrow. Last night was rough with the coughing. I feel guilty for waking DH up, but he's really sweet about it. I did get up because I couldn't stop dry coughing and went into the den and listened to an audio book. This morning, the wet coughing woke me up.
It's frustrating.
I'm still available for pocket duty. I apologize for not responding to all the posts. I do read them but my brain is just tired.
Love to all,
Carol
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Carol, I am glad the news from your pulmonologist is not earth-shattering although it seems to still be annoying. Does he offer any solutions or does he say you have to live with it? Frustrating indeed! I totally understand about waking up your DH. My DH has been sleeping in the other room for a few days while he is trying to get over a bad cold. He doesn't want to keep me up or pass it on. Sometimes loves shows itself in little ways.
My MRI for tomorrow just got moved a couple of weeks because the machine needs repair. So now I have to decide whether to go back on the Verzenio without benefit of the MRI. I may do that temporarily if my oncologist agrees. I have one spot on my spine that is of concern as I am also having pain, but I have had this before and it was a hemangioma. Praying it is the same as my tumor markers all seem to register in the normal range still.
Mara, I am praying for you and appreciate your fighting spirit. I can't imagine going through all this alone.
AJ, enjoy your sister's visit.
Love, Chris
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Hi everyone. Has anyone heard from those that haven't posted in awhile? On pocket duty and sending prayers for everyone.
Hope you are staying cool. The a.c. is running nonstop, but how lucky we are to have electric while so many are without (Texas, Indiana, etc). Heat index is 105! The crows are dipping in the large waterbowl we leave outside for night time visitors. We spray the screened in room heavily with a hose for the lizards. A bluebird visited me today. Grubs had hatched inside the large pot we have under the bird feeder and he was looking for dinner. DH cut the 1 hour walk with the dogs to 45 minutes. He walks around 6 to 6:30 a.m. but it's already hot! The asphalt can burn their little paws once the sun is up.
There are two areas of rash on my body, one is getting better on the stomach but both shoulders look like welts and itchy. Cross posted on Ibrance to see if that is the cause and been alternating between cortisone spray and heavier ointment.
@molliefish I am so sorry for the heartache that this damn disease has leveled on your friends. So very young, sigh. Someone recommended going to appointments. My neighbor offered to go to my first appointments with the MO. The MO's office prohibits visitors in treatment area and one visitor with patient during doctor visit. Assume it's due to covid.
@AJ Oh how wonderful to have your sissy visiting and able to talk openly. Hope you two have more meaningful moments this visit.
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Hi everyone, Wow so much to read and catch up on. I was at. The hospital all day yesterday, so I never got online to check in here. Everything is ok with me. I had a goo visit with my onc, who reviewed my MRI. No changes or progression, I’m stable, and I then went to the chemo lounge to get my 3 injections, the we drove ack down the shore. I was too tired to check in last night after getting home. So I missed o lot of the conversation here. Just quickly, Mara, I’m praying you take Trish’s advice and have your team try to rule out brain Mets. I am worried about you falling. @micmel , I thought of you today when my DH dropped off his referral for a core Biopsy of his swollen node in the armpit. Now they will schedule the procedure so just waiting to hear from them. He’s also getting one on his neck too..
I want to comment more so just saying Hi to y’all, bu thi is such a busy thread and I can’t check with all of you, so have a great evening.
💕Barb
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@shanagirl That's really good news on your latest checkup. Friday we find out the results of DH's biopsy on his armpit. Just wondering about your DH's possible neck biopsy? The MO that my DH sees said too close to the jugular to biopsy, so we only have the one sample. Praying for both our sweethearts..
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Hi everyone, not a lot happening down here I see Sanju on Thursday to get the results of the MRI. I've been reading along, I've arranged for a cleaner and pt also I'll be getting a fall alert in case I have another seizure,, I'm eligible for a package from the government for around $1000 and more if they assess me for more assistance as they prefer you to stay at home as long as you can. Take care everyone I'm reading along and wish you all the very
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Hello ladies!
I’m not a newbie but have a new progression as well as a new triple negative lesion of ILC Mets. In my abdominal wall. So dumb! I am very close friends with our lovely hostess with the mostest! We have talked all day long for several years. So I’m in the living room. Just sitting in the corner.
I will be embarking on my first chemotherapy journey in a few weeks. I’m going to be needing this community! I’m really very shy,so I tend to post little. But I really need some friends that get it.
I hope everyone has a good nights sleep and as always, you are in my heartfelt prayers ❤️🤗
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Hello my sweet sweet friend. I’m sitting with you in that corner. Hugging you gently. Love you my friend
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DH had one biopsy on it that was negative. But it wasn’t a core biopsy, so now his doc wants a core biopsy on it because he thinks it’s suspicious with the armpit and a few other nodes in his neck by this big one that he has had for years. Every doctor over the years told him don’t worry about it it’s nothing, but this doctor Who is an ear,nose, & throat dr is pushing this biopsy.
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chelleg, this is a group where you can hide in the corner, if that's where you want to be. Cancer can be so isolating, but Mel's Living Room is one of the warmest, most secure places to just be.
(((hugs)))
Carol
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😂🤣, I meant to reply to you and sent it to Mel, about my DH’s armpit. just can’t keep up with everything and I want to reply to everyone, but then sometimes I forget who posted what and have to go back and read it again. Oh well, DH, will go for his biopsies next week., I really love you all and appreciate you all so much.😊♥️🩵
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