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

Micmel

Minnie ~ thank you sweetheart. I am sure you're winding down from your day... Hope you have sweet dreams. Much love coming to you in Spain. 💙

Haven’t seen KatyK in a bit as well. Hope she’s doing good. Active woman she is!

Sheila~I completely understand how you're feeling. Take a deep breath and sit down. Have some relaxing chamomile tea or break out the Valium or Ativan to relax yourself. I know that gripping fear sweetheart we all do. Just try to remember. You've done this before. You got this. They keep their eyes on us to catch everything going on. I find for myself if I go to long of a time I seem to start to question where I am in my process. The check points keep me in control somehow. I learned that the hardest way possible. By being in the grips offear you describe. Remove yourself. Take something to calm you. You're not alone honey. Not by far. I will be in your pocket. I will hold your hand. I am here. If you need to vent, we are here to listen and hold your back up! Much love my friend. ~M~

GracieM2007

Mae, thank you so much, you can’t imagine how much that helps! Have been worried about it all day! Hugs!!

GracieM2007

Micmel!!! Great news!! Forward we go!

Sheila, praying things are good on your scan!!

MuddlingThrough

Gracie, great drop on tumor markers! And,yay on lower dose. Hope that is more tolerable!

GracieM2007

Thanks so much Muddling!

Micmel

thanks so much Gracie. Always a relief when it’s steady.. Thinking of Shelia and Grannax getting scans. In your pocket! hope you all have a restful relaxing sleep! Sweet dreams!!

Much love ~M~

Keetmom and family in my thoughts very much.

magdalene51

I have been trying to catch up, but I'm only on page 176, and there are currently 185 pages so I probably won't finish tonight. That being the case, I'm going to post a short update, and a house picture.

I'm still pretty much bed bound. Any exertion leaves me breathless and I've struggled with panic when I can't catch my breath and feel like I'm drowning or suffocating, and sometimes it's the smallest movement, like repositioning my pillows or my butt. I'm also having trouble with the tumor behind the esophagus which sometimes causes food to build up and get stuck. I've also had a couple of emergency diarrhea instances so the commode has reappeared by the bed. Hospice nurse suggested increasing the time release pain med but oncologist fears respiratory distress so he prefers that I use the breakthrough meds as often as needed. The conundrum is, too much and I'm a zombie, too little and I'm in pain. It's mostly the bone mets that are the problem.

Amazon continues to be my best friend, sending me stuff almost daily. Here's what I got for the foyer. Our problem was that the front door is oversized, with no storm door, and as soon as the door was opened, my Rose would want to be out! She made it a few times, and she's not easy to catch. We had been using fold up metal gates, but I wanted something permanent, something that looked like it belonged there. Here's the finished product.

By the way, I'll let y'all know when it's time to start worrying about me, ok?

illimae

Magda, the gate looks beautiful. I’m glad you’re feeling ok, not sure we could handle bad news so soon after keetmom’s passing.

Please rest easy and happy shopping!

holmes13

Gracie- congratulations on the tumor markers!!!

grannax- I'm praying that you totally misread the technicians. Maybe they were having a bad day or had other things on their minds.

magadelene- so great to see you back! What are they going to do about the tumor behind your esophagus?

Pots

Port calisthetics....you made my day! I so needed a laugh. Some nurses are really nervous poking into it so it feels like they are taking a flying leap at me. My fav are the ones who stand to the side, poke staight in...almost no pain. I’ve had mine for five months and it seems to get sticky everyone once in a while, ie they can’t get blood out of it...wonder if there is something I can eat that would make my blood thinner?

Gracie and co, I love reading about good scan news....cheers me up that the drugs/ chemo we take actually work, makes SE more tolerable!!! My Taxol dose was dropped by 10% in June and that made a huge QOL difference. I’m still waiting for chest CT results....hate the waiting.

Runor, I agree we need better descriptors for fatigue. Exhaustion is far over on one side of the crash scale but what’ else is in the middle? On Sunday I was so ?tired/fatigued/exhausted that I couldn’t even hold my head up so then I list/lean to one side when I sit. It’s pretty funny to see...not so fun for me.

I’ll try to post some pics of our packing mayhem later today. I’m going to miss our place, we have a lovely garden and just finished all the bathroom Reno’s. Corraling our stuff.....just when I think we’re done, it’s all packed and there’sno more....more bits show up needing a home. Eek!!

GracieM2007

Mags, I love the gate! It looks really nice where you have it! Sorry to hear you are still having so much pain and trouble breathing! You remain in my prayers!!!

Pots, glad to hear you are doing so much better with a 10% decrease! Can you tell me what se’s have benn better? Did you get any of your taste buds back and did your hair start coming back? Did it help with neuropathy? Let me know, thanks

Micmel

Magda~Oh sweetheart how wonderful it is to see you checking in. The gate is in genius.... seriously ! I might adopt something like that for my lunatic doggies. It really looks nice there. That was super smart!! Always thinking of you for sure.

Mae~ I agree with you in the bad news department. My heart is already very heavy. In the sad department constantly and I am thankful my blood work was good. God knows I couldn't handle anything else as this point. Hope your feeling less creaky from your cycling!

Waving hello to Holmes, my DH came back up to surprise me after my XGeva shot. Creaky and achy myself!!

Pots~Hello to you! Can't wait to see the pics of the new digs!!

Gracie~My taste buds are still affected by abraxane. They heal slowly. But my mouth doesn't seem to have fully recovered ever. The neuropathy has gotten better slightly for sure as time went by. My hair never grew back as long as I was getting abraxane, although some may have a different experience. At the end of my 13th round my nails started to lift and I just barely kept some of them. It was painful at times. But the fact remained it worked. I did notice however, it was not as successful with bone anything, other than soft tissue tumors. It gets those soft tissue tumors. Your markers going down is amazing. Congrats again. Thinking of you Lynnwood!

Waving hi to Tanya! Minnie, Grannax, MJH, haven't seen her lately either. NO1!!!hello!!! The Lynne’s also. Hope all is well!

I miss Keetmom already, so shitty.

Going to work on centerpieces today with some family. Will be nice. But it's terribly hot outside. Yuck! Much love ~M~

SheliaMarie

So the PET showed progression. New tumors in hilar and cervical nodes, less uptake but increased size of subpectoral node (causing pain), increase in L2 tumor... most likely cause of severe back pain. I’m terrified that I’m running out of treatments. Since my diagnosis last May (15 months ago), I’ve alreadybeen through Kisqali/aromasin, abraxane, halaven and will now be starting Ixempra.

Grannax2

I woke up with an entirely different attitude this morning. I think the techs were having an internal irritation day. One tech was irritated with the other one because she didn't notice I had tiny metal tabs on the pockets of my capris. They showed up on the scan, big no no. Another one was irritated that the main tech didn't notice that I had a fall in June. I hurt my ribs and that might have shown up on scan. So, I've decided to go back to my hope that I might be NEAD this time. One extreme to the other! Ha

Macie. What great news about the TM going down.

I'm going to occupy my overactive brain by planning my two September vacations. Can't wait.💞

Micmel

Sheila~not cool! But at least you know your body for sure and what's going on. Moving on to another treatment could bring great results. Have they discussed radiation for the problem of back pain?. I Have heard several several good things about results from that. Try to hang in there mentally. Your not alone my sweet friend. You're not alone. Treat yourself nicely. Buy something on Wayfair. Like I have been. Surround yourself with things you enjoy. You may have had some progression, but they are still showing you options. Which is massively important. You're on my mind. Hugs dear friend.

Much love ~M~

Grannax~ Hello sweetheart, I am glad to hear that you know those techs are in another world. If you personally know them that's different. My tech I know well from years of this shit and she looked at me and said “I'll see YOU in six month so relax". She is my friend. But Most of those techs are already thinking about it being five o'clock somewhere. Just like anyone with a full time job. I'm going to stick with it's just fine!! Love you lots ladies !

GracieM2007

Sheila! I hate that you’ve had progression! That news is always hard to take! I’m on my third treatment in two years and was feeling the same way...not knowing what was left. Sending you big hugs!

Grannax, I hope and pray you are NED!!

ElleOnWheels

Micmel....hi sweet lady! My port has been a dream, no problems at all, but years ago during my first diagnosis (17 years!) I had a dear, dear friend I met online that had to do all kinds of moves to get the port to behave. She would have me in stitches describing the port shimmy as she called it.

Gracie...what great news on the tumor markers!! So happy for you. Mine are a mess...they slowly come down, then they shoot up for a few months, then they drop back down....and right now they are in the jumping up mode again. I see a scan in my future, but it's time. It will be about 5 months since I had one.

Magda...I love that gate!! It looks beautiful. I have had many a baby gate with my furry children through the years but nothing permanent like that...I love it! Hope you are feeling well today.

Grannax...there is NOTHING funny about scanxiety, but I did chuckle when I read your change in attitude. I can go from having myself dead and buried in a month to thinking I'll live for 20 years because I feel so good...crazy the ups and downs. Hoping for great results!

Slooooowly catching up with everyone. You're an amazing bunch!!!

As I mentioned I had a very busy summer. My job is extremely concentrated in the summer as we do 10 straight, 8 show weeks of musicals along with our cabaret venue. I'm the ticket manager and have been here just about 26 years. Last year I was diagnosed in May and for the first time ever didn't attend any of the shows or events that go along with them. I was just too sick and very weak from chemo. I kept up the day to day mostly from home and have the greatest boss/company in the world that never even batted an eye about it. What a difference a year, and change in treatment, has made. I made it to all 6 openings and opening night parties, a cabaret show, a few scattered events, a retirement party and worked my regular office schedule. And then there's my regular life stuff too! I am beyond grateful. Never thought I'd be so happy to do my job...but boy am I!!

xo ~
E

Tanya_Djamila

Sheila I’m sorry about your news. Listen to Gracie and others who have had treatment changes.

I had my infusion shots and blood work today. In the chemo room there was a young couple. The female was afraid, her first treatment, her husband laid in the chair and allowed her to cling to him while the chemo dripped in. I was touched by him being there for her like that. Her hand clutched him like a child afraid who doesn’t realize they’re pinching or hurting. He was just there for her. It touched me deeply.

Have a good day all

Tanya

Minnie31

Sheilamarie, sorry to hear about progression, sending positive vibes your way, and a hand to hold.

Magdalene, that looks terrific!! Good old Amazon. 🤗

Elle, what a busy lady! Well done on keeping going!

I agree we need another term for the tiredness. Fatigue sounds a bit ott. I had a busy couple of days, then on Sunday, had to fade out of the group outing and slip off home and just lie down. Otherwise would have gone to sleep in a chair!!

Micmel, glad your bloods were good.

Tanya, I witnessed a similar scene a couple of months ago. A young lady receiving chemo and her partner/husband stayed and held her. It made me heartsore, she was so young. Life is cruel.

Good night from Spain, just past midnight, sleepy time

Micmel

Gracie~ i love hearing the good tone in your posting. I hope those numbers keep going down and down and down! Sending you big hugs. Love you gf!

Minnie~I hope that you are sleeping well and getting your rest for another hot hot day.

I was working On centerpieces today and I am figuring out the water thing. The clear bead gels that hold up the gems and goes in the middle of the cylinder take ten hours to form and I have like five bags. And theyhave tombe kept moist once you wet them. They can last a long time. But just a hug maintence thing. Going to look great. But wow.

Tanya ~ what you posted about a young couple touched me. I can understand the way they feel. My DH was at every chemo and he was my rock and my soul I adore him deeply on levels some may never experience in life. It's so sad to witness that and not want to shed a tear. Heartbreaking honestly...

Elle~ it is so great to hear of an actual company that value their employees. I know Maes did! But it's really nice that everyone is supportive to and now you're kicking butt back again at work.

Summer is ending. I can believe it... labor day is this week. Wow again.

Hope all is well!! Thinking of you all! Sheila and Grannax hugs to you ladies !

Much love ~M~

SheliaMarie

it’s been a tough day. Can’t seem to quit crying.

Daniel86

Micmel (btw I might've missed it but I dont think I know your real name) - thank you for always being so kind. Leslie is grateful for you keeping her in your prayers and thoughts.

Yesterday we went in to get her primary breast mass checked (dont really get why as a systemic exam like PET or CT would make more sense) and it doesnt seem to be any different from before. Its the exact same size. I am personally frustrated as shes been taking letrozole for the past 5 months. I hope this doesnt mean she is failing it already. On the other hand she is glad its stable.

I still cant believe Amie is gone. Too soon, way too soon. 😢

runor

SheilaMarie, I would cry too. I cringed when I read your post. The air left me, as it does as I read the many posts here. I cheer with the good news and feel a useless defeat in the face of this disease. I hope you have something in your medicine cabinet that can knock you out so you don't have to think about it for a little while. This is not good news, I can only imagine the dismay of hearing it. Hugz to you.

Tanya, what a lovely picture you painted. We all need arms around us.

Micmel and everyone else, reading and thinking of you all.

Micmel

Shelia~I have your hand in mine. Take your crying day or week, but don't you dare think this shit cancer has you... not for one second. There are other treatments and you'll be in a new mind set once you see things start to slowly change. Lean on us. You're not alone. Let the crying pass and allow the inner strength to re emerge that we all have somewhere inside. Much love friend ~M~

Daniel~ Melissa is my name. I don't usually forget people that make an impression on me, and Leslie's beautiful trooper smile during your trip with your family warmed my heart and made me smile, it stuck in my heart. You're a Special family anyone can see that.. I think of you all often and your all considered a part of my family here.... hug her for me please. Aime's death has broken me inside as well did Robins. Good people are hard to find. Much love to your family. We need to hold on to good people through this crap journey

Runor~ Hello beautiful. I was missing you! Very much!! Always enjoy reading your words.

Thinking of everyone today. Much love

~M~

50sgirl

SheilaMarie, I am so sorry you have had progression. I know how difficult it is to hear that news. Several of us on this thread have had one or more treatments that have failed, and we know how upsetting that is. You have had a rough 15 months, and it must be emotionally overwhelming for you. I know it must seem like hope is fading, but hope is still there. Lynne (the other Lynne) has not posted lately. She was planning to spend a week at one of the lakes in NH, and I think she is either still there or just settling back home. I am sure she won't mind if I tell you a bit about her treatments. She can tell you more when she returns. Lynne is on her 7th treatment in six years. Some of her treatments failed quickly, but eventually she was given some that worked. She remains active and enjoys life and spending time with her family. All it takes is the right treatment plan for you. In the meantime, I have a few questions and suggestions. 1. Get a second opinion. Your MO will not be offended, and it will give you a fresh set of eyes and a different mind to evaluate your options. Lynne goes to an MO at Dana Farber each time she need to change treatments. Btw, that MO recently told her that she has several more treatment options after her current one. 2. Have you had a biopsy lately? There have been some people on these boards whose tumors have changed characteristics over time. It is not common, but certainly worth investigating. This could change your treatment options. 3. Have you had Foundation One testing to identify genetic mutations? This might identify things that could be targeted in your treatments or identify why some treatments have failed. 3. Have you looked into clinical trials to see if you qualify or would be interested in one? I know these aren't for everyone, but it's another option. 4. Do you have someone to talk to? Someone supportive? It doesn't change the situation but can make it easier to get through. 5. Are you taking anything for anxiety? No one can say that having MBC is easy, and sometimes medications can help. I wish I had a magic wand that would make all of this go away, but I do not. When will you start your new treatment? I hope you find it a tiny bit easier to deal with everything once you are back in treatment. In the meantime, let us know if you have any questions or if we can do anything to help. I am lifting you up in prayer. (((Hugs))

Lynne, I hope you don't mind that I "talked" about you while you were gone.

Gracie, WOOHOO for the good results.

Grannax, I hope you get good news, too. Where are you going in September. I expect to see pictures.

Tanya, Congratulations for that new grandson. It is amazing that your family found out about him as you did. It must have brought on so many emotions for you.

Micmel, I am happy your blood tests were good.

I will catch up on everything else later. I am way behind.

Hugs and prayers from, Lynne

Grannax2

Hi ladies. Friday seems like la long time to wait. Today I have another thought. Bad news travels fast. She's had my report for two days so if it was super bad she would have called me, right? This rollover coaster ride every 3 months makes me crazy.

Sheila I'm so sorry for your progression. I would still be crying too. Look how nervous I am and I'm just on my first treatment. My brain is so scrambled!

50's Next week I am going on a road trip to Lake Tenkiller. It's reunion with 7 old friends I haven't seen in awhile. When we were teens we used to camp and ski on that lake. Great friends, great memories.

On the 15th I fly to Baltimore with my DD and DSIL. We are staying at a friend's house on Kent Island and intend to explore the Eastern Shore.

Micmel the centerpieces sound like they will be beautiful, I've never used that stuff that hold water. Sounds complicated.

50sgirl

Grannax, Yes, yes, yes! I meant to say that, but I neglected to do so. My experience is that bad news comes quickly. Sometimes it is because more tests are needed. You are going to drive yourself crazy. If you called, would they give you the results by phone? My MO will do that. Luckily, the hospital where I have my scans posts the results on their patient portal within two days. If I feel really anxious, I can go to medical records and get the results the day after scans. I am not a patient person. Your trips sound wonderful. You certainly have a busy September.

Hugs and prayers from, Lynne

Grannax2

50's. No, I don't think she would tell me over the phone. She doesn't have a portal. Her office is in turmoil because they are transitioning to a new location. She has severed ties with Texas Health but still works there one day a week. Her new Dallas office will be her permanent location but right now she works in three different locations. I see her in the Mesquite location which will close down soon. It's a mess.

I might try to call and get a sooner appointment at the Dallas office but that would only help by one day. Today I was with my BFF all day shopping, that helped. I'm still putting the finishing touches on my guest bath. Hopefully it will be finished when my friend gets here on Tuesday. I'm trying to keep my mind occupied with getting stuff done before Monday. I still have lots to do for this trip. Maybe I won't go completely crazy if I can just stay on task. Two nights and one day left. 💞

Micmel

50'sHello beautiful, love to see you here. I hope you're ready for the end of the summer as much as I am. Hope all is well with you and your DH. Sending hugs.

Grannax~I always hated waiting a week. It used to be that way before my hospital finally got a patient portal, now I see when I want to see. Sometimes hours after I've done it. It makes it so much easier to just get it done. I hope you can find a way to get it. I always be friended a nurse in my pcp doctors office and she would access them for me. But now it's easy to access. I think every doctor should have that. Making patients wait Is mean. Holding your hand.

you have given me the decorating bug. Now I've moved onto my master suite, which I've been sleeping in, when DH isn't. Here. I let him have the big bed, when he's here. Because he is the one always driving hours and hours to be here. He is my priority, caretakers must get rest. It's very important. I found this pillow on Wayfair. It's called a cool sleep memory cool gel pillow. I have never slept better any neck pain is gone....so I asked him to lay on mine for a while and I could tell he liked it. So I ordered him one for the house. He liked it so much , he took it with him! I love making him smile. Thats what he does for me!!

Much love to all. I slept all day. Courtesy of misses XGeva. Biatch better work

Grannax2

I'll have to order one of those pillows. Good night all.💞