My Husband, My Life, My Love, My Family, My Cancer
Comments
-
That’s so awesome, Mae. It doesn’t say the hell you go through every time you have to have (is it cyberknife?). It is great when you get out there and tell your story. Thank you for sharing.
0 -
Illimae, Nice article. I love the photo of you and DH. Was it taken near your mountain home?
0 -
Mae - autograph please! The article brings hope to those with a more aggressive cancer. Are you still on this med
0 -
Sunshine- Stable is good !!
Pots- Pocket duty for you too.
Mel- Yeah pets are expensive. And their ultimate loss is awful. I have never had a dog. I am a cat person. And they are pretty independent. No walking. But mine is on a med twice a day, so I have to be available to give him his med. But I do not regret having him. He is my best friend.
Mae- Great article and video !!! Our superstar.
0 -
you are special and beautiful family. Made me tear up strong woman. Thanks for sharing your story.
0 -
KBL, yeah, it doesn’t tell the whole story (that is hate gamma knife so much!) but it is being honest that I’m tolerating Tukysa (the ad drug) well and that I rock, lol.
Goldens, I’ve been on this combo since September 2020, it hasn’t been as beneficial for brain mets as I hoped but it has kept me stable.
0 -
Nice article Mae, does mention side effects of Tuksya, missing many parts of the long time you spent unable to eat right after the craniotomy. You have been through so many more procedures than me and my hat is off to you for being able to carry on as well as you do.
0 -
Mae- what a wonderful article and I loved the video. Rock on 🤘
0 -
Great article Mae!
Mel-I understand your decision about not getting another dog. I'm a cat person but after my last cat died a few years ago, I decided not to get another, even though I love having a cat. One big reason is money-vet bills now are so high and even the food and litter stretch a limited income. Also, I was thinking when I wound up in the hospital for a week recently, it would have been much more stressful if I had needed someone to come in with no notice to take care of my cat.
I am slowly recuperating from my broken leg. I can walk short distances with a cane now so I am going to try my first car trip-just a few blocks away to pick up a "senior" lunch. While it has been challenging, it has not been as bad as I feared it would be. They put a rod in and I am amazed that I can bear weight this soon. But I feel it when I overdo.
0 -
mae, i'm so happy you got to tell your story - even if parts were left out. Nice to be able to say that I "know" a celebrity!
0 -
It does leave a lot of SE’s out but I understand why since this is about living with MBC while geared towards a specific medication. The medication was not responsible for my troubles, brain surgery was and they don’t want to scare the crap out of people, lol. I’m told it’s going to run for 3 months and my media contact (that sounds bizarre to say) said it may be run in huffington post too. I know that’s an online thing but not one I follow or pay much attention to. I’m not big on being in a spotlight at all but do like to show that MBC is not all sunshine or gloom, at least not m version.
0 -
Chicagoan- happy to hear you are slowly getting around more. It will take awhile so take care of yourself.
Mae- if one would want to be in the spotlight it sure wouldn't be because of MBC! Thank you for sharing a small part of your journey. I saw the picture of your cabin. It will be perfect for you both. How far is the nearest town? Are you still searching for a rescue dog?
Mel- I can understand the reasons why you have come to your decision on not getting another dog. Although there is no other companion like them they can be alot of work. Our sweet 17 year old Abby has had some issues the last couple of months. It is so hard to deal with . I will know when it's time to let her go. I guess I have come to the same decision that I would not get another dog. I figure my parents are looking after all my dogs in heaven and I can hear them yelling to me "no more!" Lol
0 -
Mel, I can understand not getting another dog. I don't think I want anymore cats when my cats go either.
0 -
mae: You go, Girl!!! And the article gives other folks hope. I hope you find joy in your mountain idyll. The pictures you post of critters and hillsides are wonderful. I would love to see all the stars at night but that would mean not living in my urban environment and I am afraid I am a city dweller through and through. My 'hood has a High Street and it is like living in a small town but ten minutes away by car is the third largest city in Canada and the ocean. Maybe an hour away are the mountains. It was said of Vancouver that you could go sailing in the morning and skiing in the afternoon. All true but you need a really good income to be able to do either. Putting a roof over your head is enough of a challenge.
pots: Pocket duty for you on Friday. Once every three weeks is plenty enough for me. Having to go BCCA every week especially while Broadway is being ripped up for the new subway line would be so trying to the spirit. When I went on Monday there was virtually no parking either. By the time I left it had really opened up. Are you getting your parking free still? There has to be some silver lining.
kikomoon: We hire people these days. Too old to be hoisting sinks, lying on our backs to do pipes. It cuts down on yelling at each other too. :-)
0 -
Mae, I knew it was some kind of knife. Gamma knife. I know it does the trick, but still a very hard thing to do. You do rock!!!
Chicagoan, I’m glad you’re getting better with your femur and that it’s healing well.
0 -
Mae- nice article and really cute photo! You and Mara are my inspiration having Mets in the brain too. I have found Tukysa to be super tolerable. Xeloda, not so much.
Pots, in your pocket for Friday!
Chicagoan, glad it’s turning out not to be as bad as you thought. Hoping for a speedy recovery
0 -
Mae- nice article and story. Love all the pics from the cabin, especially the starry sky.
Mel - I completely understand about the dog. I love my dog, but we will not get another.
We registered our boat today (had to go about an hour away to do it) and we're hoping to put it in the water this week if the weather cooperates.
0 -
Kikomoon~nice to see you hope your doing well.
Chicagoan~glad your leg is getting easier. I'm still so sorry it broke.
Pots~in pocket for Friday absolutely. Say hi to stillivin for me please I miss her too!
SeeQ~I want one so bad but realize: it's probably better not to open that can again. No dog could replace my Deeohgee or Tag anyway. I just think it's better to be able to focus on myself and not worry should I not be up to par. Honestly, I also don't knowhow long I'll stay well enough to take care of it year after year. With this disease, you never know.
Time for my non Sleeping insomnia self to try. It's my naps for sure during the day but I just love them and need them. I've taken up reading again. I'm loving it. Takes me to another place for a while. It's good for me
0 -
Mel, glad you are enjoying reading so much.
Had a different sort of breakfast today. Mostly due to my laziness about opening a new jar of beans. I purchased a red pepper at the grocery store yesterday. I cut it up, left seeds, stem and pale bits. Put a few servings worth in baggies and put the ones I did not use in the freezer after placing them in a container. I used my chopper to give it the consistency of salsa mixed with spinach I put in as well. Only had mexican flavoured beefless ground so used it up, put the spinach/red pepper mixture on top. Cooked 60 seconds in the microwave. Added seasoning which was a dry seasoning you would use to make fries supreme, tastes like dry taco bell flavouring which was good, little italian and salt and bran for fiber. Used some ketchup and mayo as well and it was pretty delicious. I like that dry seasoning is opening me up to other tastes. I also bought a small mushroom which will be cut up and put in the freezer as well. I chop them up in the chopper to make tiny pieces, they are very good. I could also probably make some sort of sloppy joe sauce for the ground as well. I will say though that food is so expensive, I can understand why some people cannot afford produce to be honest.
0 -
today is going to be close to 70 wow. How nice is that. I just hope it doesn't get too hot too soon.
Reporting for pocket duty if needed.
0 -
kikomoon, Xeloda seems to get much more tolerable with a little time and the right meds to treat the initial SE’s.
Heading back to Houston this morning and looking at puppies to adopt on our way out of town 😁 more on that later.
0 -
Well I went to see my local ortho doc about my joint issues. I posted about this 3 days ago (a few pages back). I wanted to see 1 doc for ALL my joints, my whole body. Well, that did not go as planned. Let me explain.
I went into the ortho office and the doc had already told the nursing staff she wanted plain x-rays of my shoulders, hips, pelvis, and lower back (before I went into the exam room). They have the capabilities of doing plain x-rays there in the office. Then the doc came in the exam room. She did not examine me--hum. She pulled up the computer and reviewed the x-rays. She said I have arthritis in my shoulders and hips. Right hip is bone on bone. She said my lumbar spine is "severe, severe"-- her words.
She then started ordering things. A bone scan-- she wants to see if the cancer could be a problem. She said she did not see any cancerous lesions, but wanted to do a scan. I last had a bone scan in May 2020. My MO says the bone mets are quiet, but ortho still wants to rescan. Then ortho ordered steroid shots to the shoulders and right hip. Also ordered a MRI of lumbar spine to re-eval (last MRI lumbar spine was 2019). She also wants me to see her co-worker, a spine ortho doc---- hence I am not staying with 1 ortho doc, sigh.
Ortho doc is also wondering if the RA and autoimmune issues are the problem. She said my joints do not look like a typical 51 year old woman. So she would be interested in what the rheumy has to say when consulted the end of May.
I did message my MO when I got home to tell them I am doing a bone scan per ortho. I did not want my MO to feel that the ortho doc is stepping on her territory. MO nurse said that they are sure it is not the cancer progressing in the bones, but go ahead with the bone scan and keep them up to date.
So now waiting on bone scan, steroid shot in hip (holding off on shoulders for now, since the hip pain is worse than the shoulders), MRI, and appointment to see spine doc. I have been told in the past (by this same spine doc) that surgery is out for me so I am not expecting much help for the spine.
0 -
Candy- it does sound like the ortho is very thorough. Getting the extra scans will give you an up to date view of everything and a sense of knowing exactly what's going on. These days one doctor for everything is hard to come by.
Mae- keep us posted on the puppy search
Mel - enjoy the warm day. Good day to go out for a walk if you are able
Elderberry- I love out west with the mountains and ocean. In my younger years I spent some time on the island in Victoria. Love it but way too expensive for the average person like me. I love big cities to visit but I'm a small town girl.
0 -
Though I am glad that they did not find cancer to be the issue in your bones, I am concerned about your spine not being treated. You have tried to find out so many times as well. May a suitable solution come up very soon for you.
I am not doing much, quite sleepy after my Herceptin yesterday. Slept most of the afternoon and evening when I got home and wound up staying up til 3 in the morning because of the sleeping in the evening. Oh well. It is warm and windy here, power already went out for a few minutes but it was back quickly. I am planning to just clear out my trash and finally get rid of a broken portable washer that was just sitting in the front closet, will let me store some jackets and the cardboard from deliveries.
I also had a delicious but admittedly bizarre breakfast. I decided to take 1/2 cup black beans, 1 hashbrown pattie. Defrosted the hashbrown pattie so I could chop it up into more of a hash, mixed with the beans. I then decided I wanted some garlic so I took a piece of garlic bread, chopped it up. It was pretty well blended up and added it to the hashbrown and beans. Cooked in the oven at 350 for around 7 minutes and then changed to the toast settingfor another 3 mins. Put on a plate and added fries supreme dry seasoning, it is quite delicious, salt, sprinkle of wheat bran and used a small spoonful of mayo to bind together. Quite delicious and I could really detect the hashbrowns but also the garlic bread. I will add this to my roster of breakfast foods. I think I may try to do something different with an english muffin in future. Toast it, put it in the chopper and mix with a little peanut butter and peanut butter powder with some butter. This would be a meal but probably more interesting than when I eat a little peanut butter instead of supper. I even looked up have a hashbrown with peanut butter too. Getting weird tastes, that is for sure.
0 -
Mae, cannot wait for pictures when you pick your puppies.
0 -
Mae, good luck on finding a pup. You’ll be great pup parents.
Candy, I hope they can help you. That’s all that matters. Sorry you have to see more than one doc.
I’ve been taking Zquill the last few nights. I am sleeping so good that I’ve had more energy than I can remember. On Tuesday, I emptied out one closet and got everything in its place and tossed what needed to be tossed. Wednesday, my husband and I had my grandson all day. Today, I emptied out my spare bedroom, which used to be my office. One box for burning and the rest in the fireproof box. I’m a paper hoarder, it seems. I had taxes as far back as 2004. Lol. It felt so good to purge. I can say I definitely videotaped my daughter way too much when she was little. I have so many VHS tapes and have transferred a few to my computer, but it’s going to take a long time. I’m so grateful for Xeloda and Faslodex. I have been feeling much better than I did on Ibrance. I still have lots of pain, but it’s been there since 2013, so I’m used to it. Mae is right, Xeloda is very tolerable for me. The first few months were rough. I haven’t been nauseous as of late either.
0 -
Candy, That sounds kind of concerning that your ortho said “severe, severe” about your lumbar spine. Do you think she sees arthritis? My lumbar spine isn’t great either with stenosis, degenerative changes and shifting of L4 over L5 but I’ve resisted fusion for 5 years. Now with my recent L1 lesion and surgery I’m probably even worse. I hope the steroid shots help your hips. It’s pretty miserable to have pain all the time.
Mae, yes, anxious to see your new puppy or dog when you get it!
Mara, just saying hello. You’re a much more creative breakfast cook than I am. Oatmeal is my go to, and it’s out of a box. Lol. I’ve also been following Left Foot Forward’s Caring Bridge and it sounds like she’s had some good days, from her husband’s posts. I hope they continue.
Lazy day for me too. Tomorrow I have labs to make sure I’m ok to start chemo on Monday. They should be fine since I’ve been off treatment for so long. Ugh. I hope Monday goes ok, I hope my port works, and the meds start attacking my liver mets. 🤞 Saw some friends for lunches over the past couple weeks that I haven’t seen for quite a while and it was good to catch up with what they’ve been doing. Got me out of my own head and concerns.
Hi Everyone, I read along and hope you’re managing as well as you can be. 🌺
0 -
KBL- Glad to read you have had more energy lately and can purge and organize. I am an organizer. I hope your "high" lasts and lasts, and the Xeloda stays kind to you.
Rosie- I knew my lumbar spine was bad. I have had issues for YEARS. I do not know how to read x-rays, but even I can see there is no cushion between L5 and S1. And other docs have said it is bad. And the radiologist read of MRI's say "severe".
0 -
Thank you, Candy. I'm going to use this energy to my advantage as long as I can. I would like not to have to use the Zquill, but I see the total difference with what a good night’s sleep can do.
Rosie24, I hope your labs are good enough to have your chemo. So glad you've gotten to see friends.
0 -
In the lab's pockets to make sure they clear you for chemo as well. I was glad as well to read you got to see friends. As far as cooking goes, I work with what I have and my particular skill set or lack thereof sometimes.
0
