My Husband, My Life, My Love, My Family, My Cancer

Mae - love the good news you shared. Congrats and enjoy those special feelings of calmness and freedom. Enhertu sounds like a wonder drug for folks with brain mets.

Sending comforting vibes for all those struggling. HUGS❤️.

Mara- Oh my heart that is hysterical. I needed a good laugh.

Yesterday afternoon I ended up in the ER. I was really struggling with my breathing and had just gotten exhausted trying to keep up with it at home. I wasn't admitted so that's a good thing. They sent me home with instructions to wear the oxygen all the time and contact my MO to be seen. They did an XRay of my chest and another CTA and it seems the lymphangitic spread is worse. I'm really angry and really scared all at the same time. In the two weeks my insurance has been fighting with Novartis over Piqray my cancer got worse. I have to call my MO on Monday and I want to ask him if we are doing the most aggressive thing for this. I feel like there is no sense of urgency. Maybe the urgency is just mine and I'm more sensitive to it because it's my lungs. I'm trying not to let my emotions get the best of me, I guess I just feel a little forgotten in all of the run around. I'm only on day 3 of Piqray so it's early still. I'm trying to trust the process.

Hello! Hello Everyone! It has been a while! Everything on the site is different and it took me a while to find my way here. I have not read ALL the posts since my last visit. As always there is good news and bad news, people struggling forward under great burdens. It makes me sad to read. It makes me amazed at how tough people are!

The past few months have been … not sure I have the right words. I posted a while back that Hub was having trouble with his ankles, suddenly arthritis that was crippling him and the bone doc said the only good news is that he can't possibly get any worse. His ankles are toast! They want to fuse his ankles to reduce the pain. Since then (think I mentioned this) it has come to our attention that he might have a disease called CMT which affects nerves. He has had two genetic tests and seen several 'specialists' and still we have NO IDEA what is going on, no hope for dealing with it and no direction where to go next or what to do. I've read a lot in the last few pages about the broken state of the US health system. Well, Canada is no better and the waits are loooonnngg. We feel like a tennis ball that gets whacked from one doc to another. Once a doc passes us on he shrugs and closes the door, we're not his problem anymore. No one has stepped up and said "let's take this situation in hand and see if we can solve it or at least figure it out." So I have been playing Doctor Google and being the one pushing this health issue along. But, I have hit a brick wall. Watching Hub stagger and lurch around here is agonizing. The tasks that we must do to live here are overwhelming us. More physical work is landing on me and I already do a lot of the physical chores. But I'm not getting younger. Living here is getting harder. Our hearts break at the thought of leaving. But that is where we are. But I can't get Hub to budge! He refuses to accept the reality attached to the ends of his legs. He is 61 and at this rate looks like his work life is over. So, that all sucks.

Then Daughter has to go for cervical biopsy because she has a bad pap. They bump her to the front of the line and get her in much faster than normal. We await pathology and I try not to think about it because it gives me chest pain.

I had boob ultrasound last week. Tech went over and over the boob, much clicking and machine adjusting and screen tapping and you know where your mind goes. Oh shit. Doc usually calls immediately when it's good news to say all is well. This time I got a call saying the Doc wants a phone chat with me and we set a time. My heart fell to my shoes. I keep telling myself it might be nothing. But we ALL have been hoodwinked by tests and we ALL know that the hope that it might be nothing can sucker punch us right in the mouth.

In other news, I have taken up studying the tarot. I'm not sure why. It is very interesting and I like learning things. But in my almost 60 years the tarot has never interested me and then suddenly it does. I can't explain this. I watched many youtube videos and figured I wasn't nearly spiritual, woowoo, or mystical enough like the other tarotubers. They had altars and sacred spaces. I decided I needed a sacred space to set up my altar. Hmm, where? Decided that the horse shelter would work. No horses in it. I dusted the cobwebs off the walls, yanked the weeds growing up between the rubber floor mats. I shovelled out the horse shit. I swept the floor clean. I scrubbed, on hands and knees, the rubber flooring with a mix of laundry soap and Oxiclean. I set up a lawn chair, a small table with candle and some sacred objects (okay, some rocks I found in the driveway and a weird plastic cube). Got a jug of water in case the candle got out of hand and tried to burn down the property - safety first. I settled there one late summer eve and lit the candle. It was quiet. Mosquitoes found me and swarmed. The scent of horse piss was overwhelming despite scrubbing. The lawn chair was set on a slope and I was leaning uncomfortably sideways. And now there's a momma bear with 2 cubs in the neighbourhood. All I need is to be sitting out there like a big dummy, smelling horse pee and being eaten by bugs when momma bear stumbles along and decides I'm a threat to her babies. Bears, horse pee and tarot just are not mixing well for me right now. Spirituality FAIL !

I am hoping I get the all clear for Daughter, the all clear for me and failing that hope I have the fortitude to meet what comes. As so many of you demonstrate every day. With such grace. I hope you all know that.

Take care, all you here in Mel's living room. Blessings to you all.

@runor — smiling from reading a post from you this morning… sad to read all that is going on with you, hub, and daughter—- hoping for the best outcome for all of you.

Please keep us posted. You are definitely part of this family

@emac877 — I don’t know what kind of home oxygen concentrator you will be using. My advice is to make sure to have the water bubblier to keep the air “moist”. I found my sinuses really dry out without the added humidity.

Good evening everyone. Hope it's a nice cool day and that you are enjoying the day. Prayers are sent out to all in need. Gotta say that squirrel really made me laugh out loud. Can't remember the last time I laughed so hard.

@sunshine99 Your coughing and lack of sleep, plus minimum eating, sure has me concerned. The digestive track sure doesn't seem to work properly. I hope it's nice and cool in your home and you get much needed relief asap.

@emac877 In your corner for prayers for improvement asap! I don't know about your new diagnosis, so I'll try to get up to speed reading. I'm so glad someone responded that has information to help you. I know you are scared, but hold on as best as you can. We are here to support you and I know your team will get you back in the right direction.

Some good news here. DH's blood tests were improved enough that once again he can wait a bit longer before starting tx for Non-Hodgkin's Lymphoma. He walks (the dogs) a mile a day, and swims an hour a day. He is on numerous vitamins.

I sometimes find myself checking info from the past on this site. Of particular note was a poster that had decided a certain treatment (that was widely accepted in delaying or treating progression) was responsible for serious adverse events based on social media reports (not b.c.org site). My own regret is that I did not take an AI after double mastectomy 4 years ago. Could either of our breast cancer journeys have stayed at a lesser stage? I don't know. Hindsight is 20/20 and can't change either of our medical outcomes. I just hope that MO's take the time to really educate us thoroughly to pros and cons of therapies.

Mae

Wonderful news, thanks for sharing, it lifted my spirits, as did Mara's squirrel video and Runor's seance story!

Mara

Hope your ability to move with confidence is improving. I know from your posts how consistent you've been at including fitness in your daily schedule, even when you can't leave the house. Hope that effort helps you with your current issues.

Emac

Sounds like you're "hanging tough" girl, keep at it. It's frightening when no one but you has a sense of urgency in a critical situation, but you are handling it well. We are a solid wall of support behind you. I have no medical knowledge, but the comment about getting a second opinion sounds good to me.

Irishlove

Please don't second guess yourself. I took an AI for 2.5 years after surgery, as per the MO's recommendation and only stopped when multiple bone mets showed up. None of us know where our choices will lead us until we're there, but that's what makes a life.

Sondraf

You and your husband's recent experience with NIH is horrifying. So sorry that happened to you. Think I read that you were having a private consult. Hope that gets things back on the right track.

Sunshine99

The coughing and spasms combined with the weight loss must be exhausting. Hope your MO appointment today goes well and provides some solutions. Thanks so much for the info on the washcloth. I went to the Purl Soho site and downloaded the pattern. It's beautiful. Are you using their yarn or have you found another that you like, and if so, do you mind sharing? I'm in another corner of the living room in case you need an extra stitch marker ;)

Thanks to everyone who responded to my earlier post about lung nodules - one 2mm and one 4 mm in the right lung. You were all spot on! Saw my MO last week and she pulled up my CT scans going back to 10/22. The nodules are there and haven't grown, so she feels confident they are not cancer. My scans have now been extended to 6 months for the first time since my stage IV diagnosis in May, 2022. Feel as though the black cloud has lifted, at least temporarily, and I am frantically trying to pack in as much enjoyment as I can in the next 6 months.

Mel, cookie54, candy 678, Shana, dodgersgirl, Chicagoan and everyone else here, I think of you all each day and send positive thoughts and energy in your direction.

Love and hugs,

Eleanora

I am sorry I cannot get to everyone but know I care and love you all. Glad the flying squirrel was amusing, I most certainly did like the way she was looking at her mom.

Emac, I also hope answers come quickly.

Runor, I am sorry about your husband, daughter and you. In your pocket.

My week is busier than usual, got nurse coming over for routine blood pressure etc. Wednesday for Herceptin and Thursday is OT, hoping to hear about Para Transit, would basically pick me up at my house to go somewhere and pick me up, make an appointment 3 days ahead. Friday, phone call from the nurse.

Today besides the nurse, usual stuff, laundry, garbage takeout and household chores. Planning to go out after nurse, walk around block probably and do myPT. Not good at PT in the morning.

Not firm on meals today. Egg mcmuffin with cheese shreds mixed in and a sausage pattie as well. Probably go garlic on the egg mcmuffin. I do like toasting the egg mcmuffin separate as I like how it comes out of the toaster oven better. Further meals will include beans and the stuff for that. I am also giving up on chocolate milk or any milk. I hate the taste and wind up dumping out the rest. Going to stick to cheese as my dairy. Waste of money struggling to drink it and have it expire on me. Sticking to what I like I think. Made the egg mcuffin as described with shredded cheese in the eggs. Smells good.

Hope all have a good day, for those struggling, in your pockets with warm, healing thoughts.

Runor!!! How lovely to see you here. I’m sorry for all the ___ you’ve been dealing with. I mean, when is enough ENOUGH??? Thank you for your updates and stories. I shook my head, cried a little and laughed a little.

Irish, thank you. I have a video visit with my MO today. I agree that SOMETHING is going on. I just don’t know where. I’m still waiting on authorization for the motility (esophagus) study. I’ll call them this morning. Fortunately, the temps are pleasant here. No AC in our little 1910 house, but we rarely need it. Glad to hear the DH’s blood tests improved enough that he can hold off on the new meds.

I think it’s always a guessing game when our cancer recurs. I was part of a study with my first cancer and was randomized to get chemo. I’m glad I did, even if the study showed that people with my Oncotype score do NOT benefit from chemo. At least I know that I did what I could. I also took Ais and still recurred. So, I guess what I’m saying is don’t feel guilty for not taking the AIs. We do the best we can with the info we have.

I had a so-so night last night. Not the best, but not the worst. Weight was up .2 pounds from yesterday LOL.

Eleanora, I’m not using the Purl Soho yarn, but rather a fine cotton blend I found on Amazon. It’s ESTAKO Happy Cotton, fine (2) and I’m using a US 4 needle. I’m making them smaller (because I felt like it) and am casting on 43 stitches. Thank you for the offer of the extra stitch marker. One can never have too many!

Waving hi to everyone. It’s getting crowded but the walls keep expanding and there’s always room for one more!

I have my video visit with my MO this afternoon. DH is going to join on the call. He’s better at remembering details than I am.

Happy Monday!

Carol

Good afternoon ladies

I’ve been reading along and keeping up. Not responding in word but hoping for the best with every struggle.

Mae so happy to read your good news.

Runor thanks for the tarot hilarious scenario. I have missed your humor.

Sunshine 99 I hope your appt goes well today. Pocket duty with lemon 🍋 baton wafer cookies.

Emac I remember last year I think there were fires where you are. Maybe that has also affected your shortness of breath. I’m hoping all gets sorted out for you soon.

Mara thanks for the squirrel 🐿️ video. I’m glad you had a good outing with your DB.

Irish love and AJ I had the Al after stage 3 and here I sit with MBC. Maybe it gave me more time who knows but I think we all just try to make the best of what has been decreed for us. Irish I’m glad your husband gets more time before treatment. Treatment impacts our QOL so much.

Cookie54 thanks for “this is my life I’m fighting for.” These people don’t act as if it’s urgent enough.

Eleanora good encouraging news about nodules stable.

Elderberry nice to see you.

Mel I hope your mouth sores are more under control and healing. Thanks for the shout out.

RK2020 I hope you’re doing alright and your se’s are becoming more manageable.

Wavin hello to Maverick, Golden, Chicagoan, Dodgers girl, Candy, and anyone else I may have forgotten.

Tanya

oh my!! So cute. I miss my Aelfric. I would grab that little boy in a heartbeat . He needs to be kissed between the ears. He needs to have his paws gently squeezed; but then, I feel like I need to wait a bit longer. And at my age an older cat would be better.

Checking in again. I feel it takes forever to recuperate from our busy trip to Ontario. Now this week I'm busy getting the house ready for daughter and SIL and relatives visit here. Two days before we left for daughters wedding our dear dog got skunked. Unfortunately the smell was all over her and the house! I was a nervous wreck. Had to throw out a bunch of bedding and clothes. Things are better now but have to replace everything. Luckily my dress for the wedding was properly covered and put away .

Yay for Mae

Emac- Things have happened so fast but hopefully your doctors will expedite matters and put in place a treatment solution. Hugs to you 🤗

Sunshine- what a terrible time you have had. I hope your visit with the MO today had more answers than questions .

Sondra- also hoping for answers to your DH situation. National health care does have its problems.

Mel- how are the mouth sores. I remember you have gone through this before

Runor- so glad to hear from you although you are dealing with everything at once . You do make me laugh with your tarot card mishap. I did have a set of tarot cards and have no idea where they are! Probably not a good sign.

It has been so hot here and I can hear my husband grumbling about watering the flowers so I better go rescue the flowers!

Waving hello to everyone

I wanted to post my pic of my beloved Aelfric (Viking for Elf Ruler) "Cat people" will understand.

My house does not feel like a home without a cat.

I have had two glasses of wine and am prepping dinner so I am not in condition to address all the ladies and S**t I want to address

Emac

Wishing and hoping that taxol kicks this beast in the butt so that you can then maintain on other meds. Saw the post from novagirl and so glad you have someone who has experienced the same issues to message. Of course we are all here for you dear heart.

Love and hugs