My Husband, My Life, My Love, My Family, My Cancer
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Thank you all for your kind words of support. It just means so much to me. Honestly, this is the kindest and most supportive group. Mel, I am thrilled your sister is doing well and NEAD!
Irishlove, do you know where in NC you might move? I am so sorry about your husband's dx. I'm glad you were able to get him to agree to treatment.
chicagoan, I would have to take at least one class (not sure the specifics) to reactivate my license. Letrozole has done a number on my cognitive functioning and I just do not think I could handle all it would take to get it active again. It was a very good thought though and at some point I will figure out what is next. Luckily my estranged husband works several jobs and is not here but to sleep at night. I also control all the finances/bills. There is still lot of work to be done with my almost 19 year old (still working on getting her driver's license and she will live at home for college). She is high functioning on the autism spectrum so nothing is easy, know what I mean?
Thank you all again for scooting over and making room for me on the couch. I LOVE warm chocolate chip cookies so I will always have them with me to share with all of you.
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@micmel - thanks for the update on your sister. I have been praying for you guys but having difficulty with new treatments and new forum to really participate lately. News sounds good, hoping she stays NEAD.
@illimae - I have not seen the video you wrote about but can feel the anguish it caused. May you find comfort in your she-shed. Cancer is so hard, at times. Pulling for all going through it now.
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cm2020, DH was originally from Ormond Beach, Fl. We met there and after 20 years moved to Boone area of NC. Came back to FL because of GD and DD. So with DS in Charlotte, that's probably going to be our target area. Good cancer hospital associated with UNCC.
Mel, what great news on your sissy. So happy to hear NEAD.
illimae, Oh I am so very sorry you had such a horrible experience. I do believe that PTSD sets in after traumatic medical situations and let's face it, it doesn't get any worse then cancer treatments that horrific. I must say you sure were brave, but I guess you really had to do what you had to do.
Hi everyone and here to support those in need and jumping into pockets. I'll be a pocket square.
Went to MO's office for those nasty butt shots and labs today. Spoke with RN (about dried up effusion and waiting on CT scan and MO appt. end of June) but worried about infection in meantime, since it is too painful to access the cath to drain (can't find any fluid to drain). She was kind enough to speak to MO and they sent me to the ER for removal. I left the ER 5 hours later with a drain tube pulled part way out as the PA and MD couldn't get it out after 3 tries. I will have to contact a surgeon tomorrow, sigh. Ibrance comes hopefully in morning and I sign for it. It's too hot to leave the package in mailbox and besides I worry it will disappear.
Night everyone and sleep tight.
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Mel - so happy to hear that your sister is NEAD. What a rollercoaster ride for both of you. Prayers that she continues to be NEAD🙏🏻🙏🏻.
Mae - how awful to relive something so stressful. But to all of you who said I could never do that - well, look at where we all are and all the things we’ve gone through. When it becomes something we need to do to fight this damn disease, we do what we have to do. We are all strong. No wimps in this bunch!Welcome to our newest sisters. This is such a wonderful place, so comforting to know we have each other.
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Irishlove-Great news that your pleural fluid dried up so quickly. My pleurex catheter was removed in a matter of minutes in the pulmonologist's office. It oozed throughout the night so I went back the next day to get the incision glued. Hope your gets taken care of quickly-doesn't sound good to have it "half-way" out.
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Mel, so happy your sister is NEAD. May it stay that way for her.
Pat, Goldens and everyone else, hope today finds you feeling better.
Deleted a couple bloated posts, thinning them out a bit.
Laundry, exercise surveys and games as usual. Breakfast today, 1/4 cup black beans, 1/4 cup beefless grounds, bunch of spinach and wheat bran for fiber. Cheese and ranch dressing in chopper as well. The beefless ground was put on plate first before chopping. 60 secs microwave, added bit of chicken seasoning as well, was really good.
I have a new great niece named Summer, pretty little girl. I don't see that side of family too much but Auntie will still look in on her from time to time.
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congrats Mara on your new niece.
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Reading along each day. Won't be able to remember all the names but do remember all the struggles and for some the torture of MBC.
Mel-happy to hear of your sisters NEAD results
Mae-i didn't see the video but I can only imagine how it would take you back to that terrible time
Kittykat- good to "see" you!
Not much going on here except rain and more rain. Won't see the sun for another week if the weather news is right. Belle looks at me with those big brown eyes so my husband tries to get her for a short walk between rainfall. The rain has been a godsend for the fires burning in Nova Scotia and other areas.
I do hope we hear from Pat. Been thinking of her constantly.
Hello to everyone and I'm in your pocket for upcoming scans and results with soggy peanut butter cups
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Mara——Congratulations on your new niece!
Irishlove——I hope that you find a home you love in Charlotte and that the transition isn't too hard. UNCC is an excellent hospital, you should be very well cared for.
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Irishlove, in your pocket as you embark on your new home as well. It can be an adventure finding somewhere else to live for sure.
Had a nice time, mall walk with DB and SIL, long drive that I enjoyed after. Older DB really is quite kind as we are getting older. I used to be frightened of his voice as a kid but he mellowed out into really good family man, husband and father to his own kids. I appreciate he tries to find regular time for our visits such as they are while we shop or not. I have a feeling that while my Mom was still with it before her death, she probably asked them to look after me. Whatever the reason, it is good to have them.
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I’m reading to catch up on what’s going on with everyone. I love this community and how everyone here is so caring even thru your own struggles. It really does bring some positivity and good vibes coming here. I won’t remember everything to comment on each one of you but here is what I’m touched by:
Mara, Wow your determination each day, is an encouragement to me. Love your meal plans each day😊, and congrats on being an Auntie💕
Mel I love this livingroom. Thanks so much. Great news about your Sister.💗
Irish, My heart is with you. I’m so. Sorry you have to move. That in itself is exhausting, and stressful packing. Prayers for your husband. 🙏💙
Cookie, hey Jersey Girl, how is the weather down South Jersey? Are you near the fire? Also, I love that you don’t leave the house without 💄 👄😂
Sending love and deep pockets for those of you going thru Scan anxiety, and just feeling plain lousy. Peace and restful sleep tonight😴
💕Barb
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Good evening ladies and gents that may be lurking. A beautiful breezy day, but zero rain in weeks. GD's pumpkin patch took a major hit so I'm watering twice daily. The only shrubs I have that thrive in dry heat are the hibiscus bushes. A surprise growth of sunflowers came this spring. The neighbors all comment and I'd like to take credit, but it's from over feeding the birds, aka squirrels. lol
I have an appt. with the surgeon to remove this darn cath. It's taped up but pulling my skin since the PA and MD in the ER cut the stitches to try and remove it. I worry it's hung up on that pleura tumor. Is it gonna be major or minor surgery? Guess we'll find out Thursday afternoon. My first scans are Monday (since being diagnosed). I'm beginning to understand anxiety only too well.
Had an awful time getting a refill for IBRANCE from Pifzer. I called them a total of 5 times. Each time they claimed they contacted MO's office. I called MO's office and spoke with Med. Asst. She said never heard from them. YIKES! My MO will only allow one month refills, depending on blood tests. It came today with one week to spare.
Pat, please let us know how you are doing along with others that are MIA lately. It's like being The Watcher, standing by the garden gate waiting for a loved ones safe arrival. I see Bestbird posted a clinical trial paper. How wonderful that she is still engaged in our well being.
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Irishlove, you will experience the full support of us in your pocket helping to ease the scanxiety for you but also, we like to imagine food items that the person might want as we support too. We will be there for whatever you need as well.
Thank you, I guess I could have said great Aunt but whatever, as long as everyone is happy, I am happy.
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One of the things I like about Mel's Place is that its a good place to catch up with so many of you that I've seen around this joint. Most seem to be doing pretty good. Yay. But I am concerned about SadieServant. I don't remember where I saw her last. Lung mets maybe. And RK2000, Your scans are worrisome. Best of luck with next treatment. Mel, you and your sister. such an awful thing to have in common.
CM2020, I can't imagine having a husband like yours. That's stress enough, Add cancer and an Autistic daughter and wow. My own 46yr daughter is autistic. Always difficult but I still see her handling life better all the time.My meds have done a number on me. but I think it's the Paxil for anxiety and depression. Not quite enough but I clearly can no longer multitask. and I have become quite Lazy. No motivation. Dr says its the depression and I need more but we lowered it already due to SE. Even that is depressing and robbing me of enjoying my life. Lots of anxiety here. I stressed over ONJ but I just needed 2 rootcanals. The procedures didn't hurt, but sore before and after for months. Now I'm stressing over the cancer that's spread to the lungs. Scans in 2 weeks. Dr in 3. I well imagine he'll be changing meds. SE are always a worry.
So many here, sorry you need this place as I do, but glad I'm not alone in the boat.
Take good care.Gailmary
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Irish love
You have so much happening now in addition to dealing with stage IV. Please treat yourself with extra kindness. Charlotte is a lovely place. Have visited several times.
In your pocket for the cath removal and your scans on Monday. I think the first time you go through it is the hardest because you don't know what to expect. I became Stage IV a year ahead of you and find the process tedious now. Ask if they will leave the access port in your hand/arm until all of the contrast has been injected so they don't have to insert it more than once.
Fingers crossed for good results.
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hello ladies. .. going to try for bed. Some nights are better than others. I know you all know this well. I hope you sleep too.
I’ve been thinking a lot about that video I saw that Mae mentioned and I just plain can’t get it out of my thoughts. I can totally see why it would affect you the way it did. I know when I saw that tear it made me so sad. But how scary that must have been for one who has to deal with something like that. I know my sister has. We talked about it today and she shared how she felt. I can’t say admire , but I sure have a new found appreciation for it. I’m so sorry for anyone that would be faced with that , or had been. I truly am without words.
the northeast has had terrible air quality because of the fires in Canada. You can actually see smoke, our eyes were irritated, and red, we’re getting their pollen because it’s all airborn and moving away. It’s like nothing I’ve seen in my lifetime . It’s June and my van is still covered in half inch thick coat of pollen and it just hasn’t gone away even with repeated washings. I just hope they can get it under control soon before the air gets worse. It seems today has been the worst day. You can actually see the smoke in the air everywhere in our town. It’s kinda spooky.0 -
Sadiesservant
Think of you frequently Pat and try to send caring thoughts your way. Hope you are receiving the care and support you deserve.
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Mara
Congratulations on the new tiny person in your world. Children have a way of lightening the most difficult of situations.
Thanks for sharing your good news!
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I did watch the Shannen D insta post eventually (and here I had just been wondering what was up with her after seeing that acrimonious divorce news) and yeah, that was intense. Im sorry you had such a reaction to seeing that Mae. Ive seen the masks hanging up in radiotherapy rooms before, but never knew how they made them. Does this mean she was under investigation for brain mets or getting treatment? You think youve seen everything in cancer treatment and then you see beyond yet another veil. As an aside - the techs were very calm in voice and action - I wonder what its like for them to have a celebrity on the table?
Worrying about Pat/Sadies. I hope she is managing ok and is just busy with a lot of admin and well, disease management.
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Sondra, my understanding is that Shannon was diagnosed with brain metastasis and is undergoing whole brain radiation. The first video was her being fitted for the mask she wore in the second video which was the actual radiation.
Mae, thank you for mentioning the video. It broke my heart to watch it. She looked so small and terrified. The tear was gut wrenching. I have severe claustrophobia and could feel my chest getting tight and heavy and I had trouble getting a breath just watching it. I can only begin to imagine how deeply it affected you.
Irish, I am with you as you get that catheter out.
Gail, thank you for the support. I'm glad your daughter is doing well and continuing to grow and handle things as she moves through life with autism. Autism just makes everything a bit more difficult to navigate and I worry so so much about my daughter.
Pat/Sadiesservent, I continue to think about you and worry about how you (and Sadie) are doing.
Mel, we are under a code red air alert today due to the fires in Canada. What you are describing is awful. I hope you are doing okay and able to stay inside during the worst of it. I was surprised that it made its way down as far as it has to affect our air quality so badly.
Mara, I often admire the sweet relationship you and your brother have. You are very lucky to have him and your SIL.
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You all are so strong in the face of so many challenges. You amaze and inspire me. ❤️ Sadie, Irish, gailmary, cm2020 - Hugs
I wish my scan results had been better. Who knew I could grow such big and robust liver lesions in 8 short weeks? Sigh. I also need to get to the bottom of a suspicious area on my jaw. My research oncologist suggested seeing an RO if it’s determined to be cancerous. Ugh. I’ve already done the face mask thing. And I’m not keen on getting any more radiation. I’ve had quite a bit. The techs asked if I wanted to keep my mask. Umm…no thank you.
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I have not seen the Instagram video of Shannon D, but looking at the mask above, if I ever need one they better give me some darn good drugs. I would never be able to do that.
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Mae,RK, Mara and to everyone here who endured brain radiation, that video is eye opening to the undeniable strength you all have. That is definitely one of my biggest fears with MBC . If I am in that situation someday I plan to ask for Ativan to help me for sure. I really don't think I could do it without a little help. Hugs to all.
irishlove Gosh those cath's are awful , I pray you finally get relief tomorrow! Those phone games between offices are sooo annoying.
gailmary Sorry your anxiety is heightened hope the meds helps soon.
Mel Glad to hear good news about your sister! Yes the air quality has been crappy here too.
livinglife Can you send your rain this way, has been terribly dry here!
shanagirl Yep quite hazy/smoky here this morning. Hoping it clears later to get a good walk in this afternoon. Actually seemed to be hanging around the during the Phillies game last night per the announcer on TV. I live about 15 miles from South Philly actually that is where I'm from until my husband drug me across the bridge lol. Although I am quite the suburban person now and enjoy the area.
Had a busy day yesterday but was nice. Went to a retirement brunch at my former workplace, met up with a friend for a walk then final stop to see my old neighbors new townhouse. Was grateful it was a good day to get it all in. Feast or famine sometimes, relaxing day for me today.
Pat I think about you several times a day and ask God to watch over you daily.❌⭕️
Waving hi to everyone here and sending good vibes to all.🌻
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I don’t know if she has brain mets (it’s possible she has Mets to the skull, which is still bone) but it seems likely. An MRI would be used to diagnose but the mask is specifically for radiation treatment and it’s made a couple days before. The whole process is scary the first time but especially when you hear those bolts being snapped in place and realize you’re literally trapped by your head. Ativan is common and necessary. It is amazing what we can get through, horrors that seem unimaginable become one more thing we have to deal with. Weird life.
Edited to add, a new post from Shannen confirms brain mets.
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I am dealing with air quality issues from the smoke coming down from Quebec to my city as well. Did not clue into it being smoke last night when we went for our drive but saw the air quality warning this morning. Air does not look to bad this morning so planning to walk around but may consider a mask as well just in case.
As far as the mask goes for the brain or other head radiation, the hardest part for me was the making of the mask. They had to use warm towels which made me feel like I could not breathe and my upper lip invariably got pulled up. Once I got used to trying to bring the lip down it was not as bad. No drugs were offered or asked for. Worst for me would have to have been having an MRI while pinned down in my mask when I had the spot treatment to my surgical area. I just made my self close eyes and drift away, sort of asleep but not really, relaxing breathing. I find it boring in there now.
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I hope all struggling with SE or new progression can feel all the support we are giving out. I am worried about Pat and the fact we have not heard from her for a while as well as the rest of you too.
Going to walk outside shortly but bring a mask just in case it is needed. Looks pretty clear right now, looked worse last night.
Did not buy groceries last night but chocolate, have not bought chocolate in a while. Meals today will include some packaged garlic noodles, stretching those out with my soup noodles to boost the amount. I do not have white milk so I will use mayo in its place, can keep the noodles in the fridge and use as a side dish, mix with canned meat or whatever I wish to. Got to also eat up my eggs, I do test them to see if they float to make sure they have not gone bad but they seem OK right now. I may also make some savoury oatmeal as well, we will see. I hope all have a good day.
Edited to add, found one of the masks Mel made for me that goes with my outfit, I don't feel that I need surgical mask but just a little something to cover up. Walking shorter walks as well just to be safe. As said, looks clear right now but later who knows. Was bad last night.
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RK, thinking of you...dammit I hate this cancer! I'm so sorry your liver mets are growing. Are you going to do a biopsy? Really, really hoping enhertu can make a positive difference, I know a couple of women here locally who are on that medication and it is working for them.
I'm still working 32 hours a week, looking into my long term disability options, just feeling more tired overall. Never thought I'd consider leaving work at my age (53), but here we are. In MBC land. Fack.
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Savoury Oatmeal was the breakfast of the day, put a bunch of steak seasoning in regular oatmeal and a bit of salt. I used to hate the texture of oatmeal but it is quite good. I am not a fruit eating person but I could see adding my ground bean mixture to a smaller helping, we will see.
I did start with the mask but wound up taking it off, bothers me if I cannot see my feet while walking. Did manage 20 mins, think that will be the amount I go for. Couple more walks may also be in order as well. Once the first one is done, others follow and 20 mins good amount since none of my bus stops are that far.
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Finally got results from CT on Friday - while bone Mets are stable, I apparently have developed another pleural effusion in lower right lung. That was how I learned I had MBC in July 2019. That can certainly explain the worsening of my shortness of breath. Will reach out to MO as my next appointment is not until 7/5.
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Goldens good news about the stable Mets. What did they do for the pleural effusion the last time? I hope the treatment will be effective and easy.
Mara congratulations on your new niece. Babies are a joy. I hope the smoke clears up soon so you can resume your walks.
Mel glad to hear your sister is NEAD. My mothers air quality is bad too, she’s in NY. She’s staying inside with air purifier she has breathing issues.
RK I hope the enhertu does a good job. You’ve been tough going through all this cancer garbage.
Sfcakes sending hugs. I know leaving work at such a young age due to necessity just sucks.
Mae I didn’t see the special but the description and picture on the thread was frightening. Do they ever put you to sleep to do it? Maybe that should be standard so you don’t have warm towels and your head screwed down.So many people posted and are going through it. I’m just grateful we have each other bc this is really exhausting sometimes.
Tanya
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