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

illimae

I’m having waaay too much fun with these little colored scratch off note pads I bought yesterday.

Micmel

omg Mae~ I want some!!!!! Those things are awesome... very cool! As usual.

Donnabelle

MJH I am so happy to hear of your daughters success story. I hope she thrives in her new career. Drugs are an insidious evil that forever change the lives of anyone involved and their loved ones. Prayers for your niece , Mel, and your sister as she navigates through this. So many more thoughts on the topic, but enough said.

Mae, love your artwork! What fun!

Hugs, Donna

Laine615

Thanks, Micmel. Fire is very scary. It's such a mess right now. The entire building is still closed. No one can enter there offices to conduct business and many have damage to their property. I learned today that a lot of the offices don't have fire insurance. They only have medical malpractice insurance and the buildings insurance doesn't cover loss of personal property or loss of income. It's just a great big mess. Most importantly though is that no one was injured. I'm very thankful for that.

Mae, those note cards are awesome! Where dod you get them?

Micmel

Donna~I cant imagine. Honestly just can’t I am scared for them both. Loving life scared all the time sucks Doesnt it? It’s one thing or another.

My mother has been sending me her precious jewelry in small packages. All of a sudden once my dad died, she’s started. Today I asked her mom, are you doing this because your thinking you’re going to out live me? And you want me to enjoy them now ? Because I’m not trying to take all of your things here ya know. She said no, she just wanted them in the right hands. She doesn’t do well with my illness. She’s what I call a peeker.. she peeks through her hands during a scary movie... which has become my life. So she peeks in occasionally. Good thing she lives long distance. I don’t think she would have taken the path that I took to get here too well. Moms. We just can’t stop loving. I’m 49 and the mention of my toe hurting sends her into a tizzy. I know she worries. She doesn’t trust anyone like she trusts me. This I know.
I have been blessed with a loving mother. Although, the relationships my other siblings have with her aren’t doing great. Separation at different ages means a lot. I was young and more resilient. Or so I thought. Maybe this cancer is a result of always feeling the constant stress and trauma in my household It has to have gone somewhere in this body of mine. Now I want it gone! For us all!

illimae

$7.99 on Amazon, so worth it. I’m doing a batch of four letter word ones too 😆🤬

booboo1

Mae,

I am sitting here laughing like a fool. Thanks for sharing. The colors are actually pretty cool

booboo1

Update on me:

Today I saw my oncologist, and she told me I tested positive for a gene mutation (found in 40% of breast cancer patients) called PIK3CA. I was actually really happy about this because she can now treat me with a chemo that will target this gene. She is putting me on PIQRAY (alpellsib). There are lots of side effects with this one, but it's very likely to work for awhile. I will be taking this, along with Faslodex, a drug that I already tried. But onc said it works even longer when taken with Faslodex, so back to getting the butt injections!

I will start my new treatment once I am finished with my radiation treatments (mid-October).

If anyone has tried this drug and has any input, I am all ears

Lynnwood1960

Booboo my onc says she will test me for this mutation when I have progression on Xeloda. Since I am currently NEAD she says it best to test when the cancer is active. She is very excited about this drug. Says it is another promising tool in the toolbox. Good luck with it. Wish I had more information to tell you.

booboo1

Thanks Lynwood. That’s exactly what my onc did. Once we discovered that Xeloda failed me, this was her next step. I am very happy with my new onc. So glad I found her. But it feels good to hear others validate that this drug is a good option. Thanks again for your reply

Newfromny

Tanya, so great to meet you yesterday, I’m Judi, I’m the one with the hat and glasses next to Melissa. It was a great experience meeting all of these strong women, I’ve been helped so much this last year from this strong BCO community. Through chemo when I was ready to give up, my friends here were priceless to me

Micmel

Hello Ladies~. Newfromny, welcome to our second home. Tanya is one of our family members here and is one of our superstars. Apparently we are in the presence of another star. It’s so nice to meet you. Its an honor to have you here. Way to represent BCO!! Loving the pics ! Loving our Tanya!

Micmel

BooBoo~ and Lynnwood. Sounds like good oncologists! I can’t imagine xeloda not working wow. It does so well for so many. It’s the strangest thing, makes no sense!

Newfromny

santabarbarian

booboo, just read your new Tx and then I saw on another thread that keto diet can assist alpelisib.

https://community.breastcancer.org/forum/8/topics/873678

Just in case you can use this info!

booboo1

Santa,

Thank you! I’ve been poking around trying to find info., so this is very helpful

movingsoccermom

Hope everyone has a great day.

Mae, just loved those cards!!

Micmel

I agree movingsoccermom, the cards are the shit. I would love them for my niece. If they ever get to her. lol love the four letter ones. They pack more punch!

Waving too BooBoo and Newfromny! You guys are stars. “I’m too sexy for my shirt”. Lol. Way to go ladies. I don’t even watch gma but I did, for you ladies, had to support our girl Tanya. Since this is her home !

Newfromny

Micmel thank you for welcoming me to this group, I also see you in the dog group which has helped me as I’m still trying to get over the passing of my Yorkie Colby

Micmel

Love doggies !!!! I’m sorry for your loss! I know they become like children. I hope each day gets a little easier. 🌹

Minnie31

Micmel, Barcelona is wonderful!! About 8 hours drive from us, so we've only been there once. Our poor village is still recovering from the recent storm, houses filled with flood mud, furniture and personal items lost. Little by little it is improving. Our beach needs some serious tidying, but our nearest Mediterranean beach is beautiful. Our weather is wonderful now, sunny in daytime, and pleasant for sleeping!

Tanya, you will be famous!!

Love to everyone xx

Minnie31

HaHa Mae, love those notes

booboo1

Dear Newfromny,


I am feeling your pain. I am very sorry for your loss. I have owned Yorkies my entire married life, and my current furry babies are very spoiled. I know the sadness of losing four of them over time, and the only thing that ever worked to ease the pain was to get another one. However, I'm getting to the point where it's no longer feasible to do that, given where I am in my cancer journey.


Wishing you peace knowing you will see Colby again.


Laurie

Micmel

Good morning Ladies!!! It's a lovely Friday outside and I hope everyone is doing at least ok! Last week I've seen my palliative care doctor and every-time I see her, she improves something for me. I had been given ritilan a while back to combat fatigue. It just made me feel awful. Like an engine with fumes only. She listened to me when I told her it gives me headaches. And it does. She switched me to short term acting adderall. Omg what a difference, no headache, no feeling like my fumes are all I have. It is a smooth feeling like I'm alive. Not only mentally. But physically. I am so thrilled she listened. I wish we all had doctors like this. Seems. A few of us have good oncologist relationships. So important. I'll have this doctor for four years in January l. I wouldn't trade her. She jumps through hoops, insurance companies DO NOT want to pay for adderall. Usually it's so difficult.... she made it happen within a few hours and it's in my hands. I love it !

booboo1

Mel,

Yes, you are very fortunate. I asked my onc yesterday if they had a palliative care group, and she said no. I was a bit surprised, but not shocked. She said I could try going to the hospital nearby to see if they would allow me to use their facilities, and their group, but I don't know. Maybe I’ll check it out.

I must say I envy the weather you are having there. Enjoy it

booboo1

My boys like to be together. Huey Lewis (the bigger one) thinks that Teddi is his baby. So cute.

Micmel

BooBoo!~I don't even have words, how the heck can every hospital NOT have palliative care? They are. Closely ran with hospice. I don't know what I would do without my palliative doctor. She's the reason I am able to do whatever little bit I can. I strive for more. I realize that I enjoy resting. I miss my strength for sure, but what upsets me is missing the gym. Missing having something to do. Even if it's just to run one errand or grab some take out. Makes me mad. But I am beyond thankful this group helps. It's not really ok that other hospitals don't offer the complete help we need!!! Loving those brother pooches

candy-678

Booboo and Mel- My cancer center doesn't have Palliative Care. The cancer center is owned by the same company as our local hospital. And if you are a patient in the hospital, you can see the palliative care nurses, but they do not have outpatient services or any way to see the Palliative Care team for an appt. When I was first diagnosed, we had a Palliative Care doctor and you scheduled an appt just like a regular doctor appt. But he left the area for greener grass and was not replaced. We do have a Hospice Dept in the hospital and they are wonderful. We used them for my mom 6 years ago--heart failure and died at home. Had a hospital bed, oxygen, visiting Nurses and Aides.

booboo1

I’m finding that the key seems to behow big the hospital network is. I sure would love to take advantage of the wonderful care you are getting from your group, Mel. I’m just really, really glad you have them. I want that for all of my MBC friends!

Micmel

BooBoo~And Candy~I want that for you guys also. Anything I need she gets me. I have patches that help, ointment I mean bone mets are freaking painful period. It blows to experience pain and No one freaking gets it or. Will even listen in this world of opioid hell. I don’t even like the stuff. I only take it when I absolutely have too, that’s why my medical marijuana is imperative to me functioning.
I had my hair done, I haven’t photographed myself since I lost my hair because I d been growing it back. Well it’s longer now than before I lost it. I took my first selfie. Thought I’d share! Don’t be scared. It is only a photo! Lmao