My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Today is the rainy day here. Yucko! DH is working at his farmers market stand this morning and is probably not happy with the rain and wind. We went for a fall drive after work yesterday. It was very very nice! Quick dinner and then off to a party to meet a candidate for our county legislature and talk politics with people at the party.
Today is Bills vs. Eagles. Not a huge football fan but the get-together is fun. DH and I will have a nice quiet dinner/evening together after the game/party. Now that Succession has finished (HBO - omg watch this series if you haven't) we will probably see if there's a new episode of Watchmen on HBO and catch up on SNL.
I've been contemplating some baking for my family. I do love baking but I'm not a huge fan of eating what I bake. My kids are though but both of them have celiac disease soooo....this week's project is Gluten-Free Cinnamon Sugar baked donuts. My SIL is coming in from Colorado for the month of November and with my other SIL we are going to trial bake cupcakes because we are making alllllll the cupcakes for my nephew's wedding next June. Yikes!!! Should be fun baking, decorating and a lot of wine and laughs. I love when she comes to visit. They come ever November so her DH can hunt in NYS. He's not a fan of hunting in Colorado. I don't know much about it but that's the story - we are just happy she is here and we can bake!
Philly how was the party on the boat?
Tanya I always feel better after a workout, even if it's just tiny. My low back and hip (from fractures) are really touchy right now so I'm doing about a fifteen minutes walk daily and some really modified PT exercises. I'll get back to my regular workouts but I am not allowed to do anything high impact or lift weights. I can walk, I can do stationary biking I can do water walking and PT and that is it. It really sucks - I used to be so active AM to PM and getting 15-16K steps on my tracker every day was pretty regular. I thought I was going to rebuild all that to my former workouts but the other day the orthopedic surgeon was pretty firm that I am never going to get back to that. Last night at the party I met a personal injury attorney who works specifically advocating for disability cases and she says that nearly every single time any of her clients is asked by SS or an attorney "what is it that you used to do that you cannot do now" - there are high emotions and crying. It's really hard but I am learning quickly that I can still feel good with a small workout and a feeling that I did something. But one thing is for sure that for me anyway getting up and doing just a short workout is enough to make me feel good.0 -
The rain has stopped for us finally. Still windy and wow, we lost a lot of leaves. Nice when they change colour but sad to think winter and cold weather is coming. Oh well, those are the seasons.
It's very cloudy here but I may walk up to the grocery store anyway. Even cloudy weather walks make me feel better. The winds certainly were howling around here last night. Certainly a preview of how winter will sound Yikes.
0 -
Good morning all
I’m hungry for pizza fish tacos and pumpkin stuff. I waver between healthy eating and eat what I want.
Booboo I go to FL cancer specialists.
Went to gym yesterday. Slept good last night.
Have a wonderful day ladies.
I may go to Trader Joe’s.
Tanya
0 -
My update is that I'm in a very difficult place right now. But, after a few days of stewing on ideas, I have a plan.
The fact is that my liver mets have NEVER, in three years of TX, responded to anything except y90s. I got 18 months of inactive mets from those procedures. So, why keep trying systematic TX expecting it to work? Makes no sense to me. Therefore, I have a consultation with my IR next week. I'm putting all my eggs in one basket. I'm desperate for him to have something to offer me. My MO knows nothing about this appointment, they are not at the same facility. My appointment with her is not till the week after that. I hope to have my procedures scheduled so I can tell her the dates. Of course, I cannot be on chemo at the same time I'm doing y90 and recovery.
I think my IR will consider me a candidate because my lung mets are basically stable. They have given me no trouble anyway and are much less deadly than my liver mets. Evidently, my liver mets are all getting worse, I have a lot in both lobes, including a new one. Did I mention I hate my liver monsters?
I now need to see the images of my liver, see what I'm up against, hear a professional explanation of what percentage of my liver is affected. Most important hear what local procedures can be done to halt their progress. No more guessing games for me.
I have a lot to live for and I'm not giving up. Besides that, I have another modeling gig on November 9th. I'll send a pic of my dress.💞
0 -
It has been ordered but has not come in. I’m sure I will have to alter it, especially the hem lol, so I hope it comes soon. Show is only two weeks away.
0 -
0 -
Good for you Grannax! It's always better to have a plan in place and know your own body. I like your idea. I have a friend here who is tired of doctors putting her on the same protocol just becuase it's what the data says works. Well it hasn't worked at all for her, but she has had her own instincts. She's on treatments - in fact she's on her third treatment now and finally her cancer is stable - but it is orthopedics where her issues are, specifially how to deal with many severe compression fractures in her thoracic spine. So she took matters into her own hands and marched herself to an IR she'd read about in another city, he gave her to complete low-down on her back, and she got herself the procedure she wanted (that her orthopedist insisted was not appropriate), and somehow she instincitively knew it was going to help her. She was right. I spoke with her the other day and she said this iR gave her her life back and she can now function around the house with things like chores and social occasions. I go to her same orthopedist for my compression fractures and it's just that he is way way way conservative about doing procdures. That's the right call for me right now. She and I disagree mightily on his competence. I love him - she hates him. It just goes to show you that every cancer and every person is unique. But her experience inspired me to be more inquisitive about my own spine and last Monday I channeled her attitude and asked the orthopedist some questions I was too afraid to know before and that he wasn't taking the time to explain. I am very pleased to hear that you are going to have a thorough conversation with the IR. I will look forward to the follow-up on that. Meanwhile - enjoy family and grandkids as much as you can. I am just coming through a super rough patch right now too and it has been sucking. I have, at times, been feeling like I could cry forever lately. Being so new at this still, I am also working through mental roller coaster as well as medical. As Philly once so eloquently stated 'this shizzle is not easy'
eta: What a gorgeous dresss!!!! OMG I absolutely love it!
0 -
Hi all.
Grannax- What day is your appt with IR? I will pray and be in your pocket for that day. YES, you have a lot to live for and good for you for not giving up. You are STRONG. LOVE the dress.
Today is sunny here. I guess the heavy rain we got yesterday has moved on to some of you.
Take care all.
0 -
Tanya~Hello darling. Hope you're enjoying your day! Can't wait to hear about your lunch with our BooBoo!! I am envious. I'd love to hug you both!!
Moomala~I still cry on and off. It will be four years for me in January.. it never stops, just becomes more mentally arrangeable. The moments come and go. I cry when I need to, laugh when I can. I don't take ANY relationship for granted. Not ever again. Because those who have stayed with me and didn't fly into oblivion with my diagnosis. The friends that say so much and then disappear. Yeah those. You're a strong woman and no matter what. Never give up. We love for love. We love to love. And to live. Whatever that may look like changes for many as we age. I'm realizing even though I have cancer, I have a wonderful life. With wonderful loving people in it. I don't have to work and I can take care of myself, and focus on what my days need for me to get to the next day, week or year. My rough patch was first diagnosed as well. It's like you're starting a long grueling work out plan. Kicks your ass. But as you stabilize and you will. You'll see the moments in between are less filled with crying and more moments of being the new you with acceptance and understanding of new limitations for ourselves. Again sucks, I know. Small things make me happy. You're amazing. Keep on pushing.
Grannax ~ with your liver. Push for more y 90 in areas that allow. Ask aboutsectional resection. To remove the bears causing you issues. IR is definitely who I would be talking to, right alongside with a liver specialist. Not just an MO. My liver specialist saved my life. I am three years NEAD because of a team approach and not sticking to “stage four protocols". You need outside the box, so just make them open it! Damn doctors. Should do whatever we want or can be done. Individually!!! Your dress is amazing. My goodness. An angel you will be. I love it. You are one of our stars for sure. Fabulous! So happy you're representing stage four so proudly. And with that lovely granddaughter. ! Hugs lovely woman.
Mara~ the sun just came out here. It e a miracle! Moved faster than we thought. So my DH doesn't have to drive home in this bad weather. Brings me comfort. Hugs! 🌹
Candy~ sunny is always better. But nothing like a great nap on a rainy day. DH took one and he needed it so much. I love watching him sleep. But now the sun is up and we are wide awake lol. 😳.
0 -
Moomala, I perpetually will feel a lump in my throat. That has not gone away since I lost my mom. I have accepted this as part of my life. I don't cry everytime it comes up and I still feel perfectly happy overall. Sometimes, TV openings have been known to do that. On the show the amazing race, that opening puts a lump in my throat or when I watched Covert Affairs, that song did it too. Not sure what the trigger is. This has actually gone on my whole life. The only songs that cause real flowing tears are You Raise Me Up by Josh Groban, My heart will go on from Titanic and I hope you Dance. Love these songs but tears will happen. Nothing wrong with still feeling tears as long as there are periods of peace, if not happiness.
0 -
I would just like to Know. Who the heck is able to sleep on 30mgs of adderall.? Me that's who. What the hell. I know they are the short term acting ones. But still when that four hours runs out bam. Deflated balloons.... but overall I highly highly recommend trying adderall if you have terrible fatigue that sucks up hours and hours of sleep. Not anymore When I nap. I don't nap as long as before. It's changed the game for me. I'd love for everyone to benefit !!!
0 -
Hey ladies
I didn’t make it to Trader Joe’s. Had lunch with 2 friends and made it home to relax. Exhausted of course.
Grannax I have been on your liver journey and I remember when you did y90. My newborn sister had a liver transplant and Micmel didn’t they resection your liver? I pray you get exactly what you need. Strong woman stand up for yourself. The dress is gorgeous and you are already a NY trained model! Looking forward to seeing you strut your stuff.
Mara I love how you describe the pain you feel with the loss of your mother. You’re so in touch with how you’re processing your emotions. I got a lump when you described that lump in your throat that never goes away. You’ve been through so much wow.
Mel I’m gonna ask my ONC about adderall I’ll take 4 hours.
Candy moomala and philly waving hello.
Tanya
0 -
Tanya~Yes full liver resection. Liver Grows back. Thank goodness. Painful but worth it. The worst surgery was my breast recon. Arggghhhhhh talk about painful Wow! They went aggressive. Sometimes you have to demand. If there are portion of your liver that they can work around Id really ask about it. They can do amazing things I was toldmy liver was inspected and fondled! Great specialist, and I quote him. “Good luck and I hope to never see you again". I'll take that!
I hope you get the adderall!!! It works.. 😁😁🌹
0 -
Tanya, thank you. It was painful and I will always miss her. What gives me peace about her passing is that she is no longer in pain herself and she no longer has to worry about my own cancer. Wherever a person goes after they pass away, I don't believe the pain or worry follows them. It does my heart good knowing from my older brother that she went peacefully with him in the room. I said my goodbyes the night before and she understood what I said. That really is all you can ask for.
Life definitely has had its ups and downs, a lot of downs this year, but also some ups. I had to sell my condo and move to an apartment, I paid off my debt and learned NOT to shop constantly and just to slow down and enjoy the small things. The lady I chat with on Fridays is a super nice lady, the one who does my check in calls on weeknights is also really nice. My life is peaceful right now and I enjoy my quiet little life. The lump is there but I will say I am finally happy most often with how things are going. I have you all to talk to and family who does care about me and who I definitely care about as well. It is much appreciated.
0 -
Grannax that dress is beautiful.
0 -
Mara~I agree with you about it taking time to adjust to a different quiet little life. Mine before cancer was busy with raising two kids. I loved every second of it. But they are older and self sufficient( my son needs to get a clue sometimes though). He’s slower to mature for some reason. But my days are quiet and filled with whatever I want to do. I watch my
Shows. Have my puppers and my friends, they come and go based on their lives, but they make time for me and always come visit. I am very content with my stability and hope against all hopes it remains and happens for all of us. I do whatever I want to do, whenever. On my pace. My DH knows. I do my very best. The adderall helps tremendously now and he is very happy with the results as well. We are enjoying our love and time together and I couldn’t ask for more. So right now... today I’m happy, content and thankful. I love you ladies here and you all get it, so I can kinda back down on the funk moods with him. He deserves my energy and focus. He’s just so supportive and my rock. I could never not respect our time together. So I try to take one day at a time. Some are hard. Like not get out of bed hard. But I think your attitude is amazing. Keep on keeping on! Lovely lady! 🌹🌹0 -
Thank you Mel for your always kind words, they mean so much to me.
0 -
Mara~well you have no idea how well you fit in here. So I’m just so glad to have you come and share with us. Your attitude is catching!! 😘
0 -
hi my friends!
Grannax wow what a dress!! Gorgeous! You will look stunning in it!
Mel - hi! So glad the Adderall is working
sounds like you are really feeling better, thank goodness!Hi Tanya and Mara and Mae and BooBoo and -Moomala! 👋🏼
I have had a really great weekend! Went to a wild and crazy Halloween dance party on a boat last night and got my dance on for a few hours. And then tonight saw Chick Corea and his AMAZING trio. Was on a date with a sweet guy and we held hands almost the whole show. Also we went out and had a yummy dinner first!
Here’s a pic from the Halloween party. I am hoping to have the energy to go to another one on Thursday - it won’t be quite as wild but lots of dancing!
0 -
Philly~Look at you beautiful woman.... I love your costume!!! You look really good. You’re amazing. I am smiling ear to ear thinking of you holding hands and having a nice dinner before a dancing storm. That’s exactly what you should be doing at your age!! Young young young. You really do a lot of things. I am impressed with the creativity with your costume. It looks like you should be hoisting a huge stein full of lager!! Thanks so much for sharing. I also hope you have the energy for Thursday. Here I am all happy all about my few hours of energy and you’re dancing up a storm looking like that!! Can’t wait for the modeling opportunity for you. I know you’ll be a natural, look at that pose! 🌹🌹 Happy Halloween 🎃👻!!
0 -
Hi, I know that there is a Xeloda thread but anyone in there is still on it. I wondered if anyone in this group had done Xeloda and what comes snext when you're ER+/PR+/HER2-? Also, how long did you get from Xeloda? I have a mass on my sternum and it feels like it's growing. Thank you so much.
0 -
Hi Dorimak I think Grannax had Xloda and probably someone else will chime in.
Philly sound like you had a fantastic evening. You look great
Tanya
0 -
You do look great Philly, like you are all set for Oktoberfest. Glad you enjoyed it.
0 -
Dorimak. Yes, I was on X for 3 months, it works for a lot of ladies and was easy to take. But, it failed for me. My MO put me on Gemzar and Carboplatin but I just found out that it failed.
Thanks for your support, ladies. I don't know which day my IR appointment will be. That's one of the calls on my list today.
I'm excited about the gown, too. And for the show, unlike last year when I was petrified. I'll share my news as soon as I can. Love to all of you.💞
0 -
Hello to everyone. I’ve been reading as much as I can with spotty internet on our cruise. Hope this flower stand picture from Passau, Germany may brighten your day. It’s been a refreshing couple of weeks where no one (other than DH) knows me and I can pretend to be perfectly healthy. Thinking of you all with good and not good news. Philly, love your party pic! (That looks to be a pretty racy costume in the background?!)
0 -
Morning all.
Philly- Looking cute as always. Glad you had a good time.
I think NicoleRod's cyroablation and biopsy is today- the 28th. If so, reporting for pocket duty.
Well Praise the Lord, I had an hour long phone conversation with my sister last night. And it went very well. She is having some difficulties right now in her family and we discussed those. I said I would pray for the issues. And I discussed my concerns for my future with the cancer. We really connected and ended with saying "I love you"- both of us.
So off I go to my MO appt today feeling pretty good--as good as we can, right?
0 -
Rosie, I noticed that racy costume to the right of Philly too. I wonder what she was supposed to be. Hard to tell. Still, that party looked like a good time for everyone attending.
0 -
Hi All,
Been down and out for over a week with a nasty stomach bug. I think I'm finally starting to see daylight again. Good news is I lost some weight, so my onc will be happy about that!
I was also on Xeloda for over a year, but it failed me too. Onc will be starting me on PIQRAY next, as I tested positive for the PIC3CA mutation. She is going to wat until my stomach is back to normal before starting it.
Grannax, that dress is simply elegant. Can't wait to see pics of you in it.
Mel, hi sweet girl. Hope you had a nice time with DH over the weekend.
Tanya, sure am glad we picked a date in Nov. for our lunch....I would have never made it if it had been scheduled this past week.
Philly, you are so darn cute in that costume! I'm so happy that you look so happy!
Waving hi to Mara, Rosie, Sondra, Mae, Candy, and Moomala.
Happy Monday
0 -
I noticed the referee in the back as well That woman has some back!!!
0 -
Oh, it was a referee. I didn't even think of that. Good eye.
Waving hi to you too Booboo. If your onc hasn't prescribed it yet, make sure she gives you an antinausea med like ondansetron or something so you don't have to experience the stomach issues you are just getting over. Sometimes a drug change can throw our digestivve systems out of whack.
Hope everyone else is having a good day as well. I am feeling really lazy so I did short rounds on the treadmill. Just listened to one song at a time and walked really fast for me. Got up to 5000 steps. Going to go out to grocery store which is about 10 minutes each way, 15 if moving slowly. It is nice and sunny and is supposed to turn rainy later in the week. It would be a shame to miss out on some sun. I may start making myself go out into the rainy crappy weather to prepare for wintery weather since I cannot stay in the whole winter due to snow.
0
