My Husband, My Life, My Love, My Family, My Cancer
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The grey kitty always makes people smile lol. Right Yndorian???0 -
Alright. Got some posts going. Even though we are all in a funk. Myself included.
Booboo- Hope the Piqray goes well for you with minimal SE. I haven't read about this med so I don't know what the common SE are.
Depression--- yeah I have that. I am not on any meds for it. But yeah I have bouts of crying. Who wouldn't in our situation.
Mae- Good looking food.
Lynnwood- Sorry you are having the back pain.
Boo- You mean you are consulting with Hospice for Palliative Care issues?? Hummm. We have a Hospice Team at my local hospital, but not Palliative Care.
My next scan is next Monday with an MO appt on Thurs. BUT.... today my MO office called and rescheduled appt for the following Monday (1 week after scans). Kind of frustrating. It seems like my MO is too busy anymore. I feel rushed at appts and now this. I have been "stable", but I wonder what will happen when I have progression or develop issues. Will I still get the brush off?? Getting anxious concerning the scans too.
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Being funky used to be a good thing back in the disco days. Parliament did a whole song about it. It meant you had that funky rhythm - who knows what that means.
I've been crying daily for a week straight. It's just too much some times. I start Aromasin tomorrow and Afinitor next week when my counts come up. I'm terrified, anxious and really depressed that Ibrance failed. I really thought something different was going to happen with Ibrance and I'd have a couple stable scans under my belt with a chance to breathe. It didn't. Not a single stable scan yet in this whole journey. I got exactly six cycles in and boom. It was working sort of, but just not good enough. The pharmacist called me today and talked me down off the ceiling about side effects of the new drugs. I felt this way going into Ibrance and letrozole too. It's just the way I'm wired with high octane anxiety. The pharmacist was sort of like "hey lady if the side effects aren't tolerable you go on a different drug". Duh but until you get started it's scary. I also have some family issues going on right now that involves me only indirectly but still makes me feel awful and lonely and sad and helpless. It means a family fracture and this is not the way I pictured my family, especially with me being sick. It's surprising that when a fracture is imminent and some people are relieved that they don't have to deal with this person anymore and I am feeling grief-stricken and fighting what's happening. I guess because I'm not really involved in the problem but the fracture affects me directly and deeply. Anyway I can't stop crying and I wake up in the morning feeling hopeless and sad. This lasts until about 10-11 am when I do my walk and then I'm a bit better. Then some piano students and even better. It's like life isn't working out the way I feel it in my heart and now I'm stage 4 cancer. In what universe is that fair. I've been in this crying all day dark place before a few times in my life. I visited the doc about the anti-depressant the other day. I'm just not feeling right about adding another new med at the moment. I don't react very well to anti-depressants I've tried in the past anyway. But if I settle into A/A and things are going along ok I may re-visit that idea and getting the MM card.So I take full responsibility for depositing funk of my own in the thread and I know you all understand! I don't really like that this thread was moved either Mel. There is some raw stuff coming out lately and I doubt many who are not stage 4 want to know and they're staying far far away especially from this funk of late. I think runor and santa are the only ones and I wouldn't trade them for anything.
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I love it! The funk train. Tanya, you clever girl. I’m sorry I didn’t chime in when you were looking for me. I was so freaked out about starting this new drug (and all of the side effects listed), I just couldn’t get past it. But once again our MBC sisters have reassured me that PIQRAY is not the monster they write about. I have been exchanging posts with Jobur, and God bless her, she said she really likes the drug. So fingers crossed I have the same response.
Mae, are you like me? You can get only take so much, and then have to retreat? It’s ok if that’s how you feel. We all have our coping mechanisms, and I’m better since I took a break. But I will always cherish this thread
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Mae~I am not really enjoying this season of American horror story. The mister jingles schpeal doesn't do a thing for me. Seems too much forced. I miss Sarah Paulson and Jessica Lange! Evan Peters! LadyGaga!!Tanya~Youre waving from the train too? Geeze this isn't a very good place we are all in. I guess this time of the year comes storming in sometimes, I can't even begin to think about thanksgiving or Christmas. Honestly. I can't even begin to care. The kids are grown, just give money and be done with it all. Few stocking stuffers. My kids are CRAZY over stocking stuffers. Every year I say no more stocking. They don't agree. I wish I had the stamina I used to have I would do the tree, myself , decorate outside and inside all alone. All shopping I did, wrapping. Everything , then it didn't seem as much to do. Now it just seems unreachable. My DS and DH did it for me last year.
Another bother is deeohgee feels the need to think that we were so thoughtful as to bring a tree inside for him to make his personal pee station. I don't want that going on. I'm thinking counter Charlie Brown tree for us! It is fine for me. But what do you give to someone who has everything? I don't know what to even give people... to me it's stress. When it's all done. Yes.... it's lovely family all that matters.
It's raining outside and very windy, cold fall night, I love these nights. They make going to bed a pleasure. A gift to have a roof over my head and warm blankets. A good sleep is good for the soul...... hugs to you ladies :::
Sandibeaches....Lanie...Daniel and Leslie.... Chicagoan....Lynnwood, my friend..🌹. Philly... masonsma....movingsoccermom.... Donnabella...blueshine....Minnie....Gumdoctor.....MJH. .Stillivin.....pots......JKL...JFL....Jensgotthis....Iwrite...........Runor....elderberry....Grannax🌹...... BOO!BOO!🌹🤗....SUQU.....Bella...GP even though you're still mad....Parry, still thinking and missing you. My best to marianelizabeth,hope her pain is manageable... Candy (of course) Mara, you sweet friend...BevJen...Divine...been obvious she hasn't posted here since the moderators did their thing, but she is missed greatly. Just so she knows. Moomala...you beautiful woman, so kind and loving..cure-ious-knowledge guru! Santabarbarian....Giddy up...Simone
if you read and don't post. Please consider sharing with us. I realize that we all get into such funks. But we have to lift each other out or what else do we do? if you read and laugh or cry with us. Don't ever feel off for posting. This is meant to be like my living room where loved ones come and go and we sit and listen as long as needed! If I've missed anyone I'll be back.
Moomala~I didn't even think about it that way. That makes me even more annoyed at what the moderators chose to do. I don't mind honestly who we have. Posting never did. But 99% was stage four. I just hope our family doesn't fracture either like you said. Not to ever compare real family to online families. I just care deeply. I'm sorry you're feeling off the track. Goodness me, I am on the set of tracks nexts to you,And apparently so are a lot of us! Let's stick together! Oh and candy Way to kick some ass
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My dear Moomala,
I am SO sorry to hear how difficult things are for you at the moment. It’s weird, but I never cry. I am on a mighty big dose of Zoloft, so that’s why...I’m not sure if that’s good or bad. But I just want you to know that tomorrow will be a brand new day, and I’ll be praying that it’s a good one for you.
You and I are in the same boat...about to start new treatments that we have no idea how we will react to. I am with you on this stage of the journey. Let’s see how we do and compare notes. I am in your pocket sister
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Mel,
Just want to wish you a warm, cozy night. I’m only a little jealous of your weather. I always loved the Fall. Nothing quite like it. I hope you snuggle in, and know that you are supremely loved by so many, especially me. I don’t know what I would have done without you a year ago. Can you believe it’s been a year since my overdose? You were there for me, and I will never forget it.
Goodnight my sweet sister.
Much love,
Booboo
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BooBoo~Sweet sister, I cannot believe it’s been a year. It’s amazing how fleeting time really is, my dad always would say to me. “Boo, Time is fleeting so enjoy little Moments”( yes my nick name as a child was Boo) I will always be here for you. I hold you close to my heart for sure Like I said I know if you hadn’t moved we would be inseparable lol. Thank you for loving me as I love you!
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Booboo thank you so so SO much! Piqray or Xeloda will be my next treatment if A/A fails. I'll be looking for you! My oncologist said she has just two patients on Piqray at the moment. I know one of them and she is doing WELL on the Piqray with NO side effects!!!! She is very happy with it. That's funny about Jobur - I was following her through the A/A thread and she was doing fairly well with SE's on that drug too. She did say she was super happy to be on Piqray over A/A. I can't remember why bu I think she started P in July or something. I'm hanging on sbaaronson and NKB who are on A/A and feeling fairly well.
I'm a huge cryer. I used to cry at Oscar Mayer Bologna commercials. I cry when I play piano. I cry when I write. But this depression crying is not fun or cleansing at all....well yesterday I was crying at my PCP's office and then HE started crying. He said 'you are FINE Janet nothing is screaming anti-depressant stat - but this shit is rough, just call me when your ready "
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Hi Micmel,
I've just been lurking. I've been kinda in a funk myself. Not really sure why. I'm doing well, I guess I'm just tired of it all. Anyway, I'll snap out of it.
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Simone~It definitely seems to be something. Going on, it’s really odd if you think about it that we all are going through the same feelings together. Maybe, it’s just the month of October. But whatever it is, we need to kicks it’s ass!! Sending you a hug!
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micmel, I think you’re right about October being part of the funk, it’s the excessive, in your face hopeful, positive pinkness and all those lucky ones who get to think they beat this and move on. It’s also less than two weeks from the 3 year anniversary of when I felt the lump, the odds of stage IV at 41 were so low and while I tried to relax, I just kinda knew. I’m still trying to get back to my pre-vacation fitness level and these cooler weather fronts that I love are also causing sucky allergies. So yeah, my usual pep is on hiatus at the moment.
But I’m making small improvements and eagerly awaiting my next trip.
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Ahhh Ladies. I have not been online for several days. First, mad rush for DH birthday, preceded by an argument. Ugh. DH is usually very easy going, but is in a hurry to get moving boxes dealt with before he goes back to work. Understood. BUT. He believes I am not moving at the speed HE thinks I should move.....so argument there. I was so annoyed almost didn't go to his birthday dinner. Threatened to print my first PET scan and tape it to his mirror so he had to look at it every morning. This is exceptionally unusual for us, but I guess between retirement and job searching to be expected. All magnified by the change in insurance, the requirement to find a new PCM, get an appointment and a referral in time for my next cycle, 25 October. And here is where the fun really begins. Did find a new PCM. Appointment on Monday and I like her, so that is a massive relief. She sent the referral that day, so big relief.......NOT. Called today and.......the referral was cancelled. Yep. Cancelled. When I called and asked why, I was told---you are an East coast patient, not West coast patient. Just gobsmacked. Understand, to see the new PCM we had to change the insurance. I printed out the letter from the WEST coast insurance verifying that we were registered in the West, and the new insurance card, again with the West. I was livid. And you better believe you could hear that in my voice. So the CUSTOMER SERVICE AGENT said, ma'am, I am not able to help you until you are not hostile. Well. That sure did not make me less hostile I can tell you that. I told her this is a great thank you for 39 years of service and you better believe when your life is threatened you get hostile and hung up the phone. Called DH who conferenced with me on another call. He was perhaps calmer, but in many ways meaner with his words, which was comforting. Worked our way up the food chain and someone is to call tomorrow. So. Here I am, 9 days out from the next cycle. No consult, no approval. I have a screaming headache--such a surprise. I am also almost speechless. W T H. So, I am sorry to add to the funk, but I am right beside all of you on that train, although it is possible I am the engine of the train, since I have so much steam pouring out of me, I could power multiple freight trains.....ARGHHHHHHHHH.
In an effort to provide something uplifting, I am enclosing 2 pictures. First is our new cat Sylvie, with the big blue eyes. She is on her tower contemplating the world with her head cocked to one side. The second is my pot of tomato seeds. Our climate is such that if I can conjure enough daylight (with a grow light), we have enough warmth for tomatoes to grow into the fall. Have never tried this, but my fingers are crossed.
Thinking of all of you as we deal with our tribulations. Movingsoccermom.
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My friends coming to visit today for 3 days.
Mae I think it’s the language of pink.
Tanya
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moving soccer I would’ve lost my mind too. Hostile really there’s a name for how I act when I get screwed over.
I love taping the Pet scan to the mirror. We dont fight much but when we do it’s terrible. I’m sure you’ll be making up soon or it already happened.
I’m not attending the BC walk this year but I am giving an BC awareness talk with three other survivors. I’m the only one stage 4.
Booboo shout out. I’m glad you’ll start new treatment with moomala.
Spoke to one of my Stage 4 BC friends and she got married, eloped so she didn’t have to hear any crap.
Tanya0 -
I just wanted to say hello. I'm a lurker here.
Mel....I appreciate getting to hang out in your livingroom. I hope the funk lifts soon for everyone.
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Hello and welcome Dutchiris, I appreciate you taking the time to post to our second home! Hope you will feel comfortable to share your good times and family times and when you need support times. We are a family. I welcome you with open arms! 🌹🌹🧁
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moving soccer~Geeze you must be worn out! That is some stress we don’t need for sure. I am aghast sometimes as the way they get away with treating people like that. It’s not like you’re trying to arrange to purchase a tissue for a cold. We are talking our lives for goodness sake! Good job for getting DH to advocate for you as well. Sometimes when you can’t get answers. Is when I feel like just a number. Not all doctors. But some. It is just a pain. We’re already dealing with enough crap!! And to change insurances on top of everything else. Egads!
Speaking of egads. I hope you’re doing well also!
Tanya~ Youre so busy woman. A guest for three days. Just went on good morning America, do you ever rest.? I am so impressed with you. Funk train or not, you get it done.
I’ve been thinking about Muddling, haven’t heard one word from her. Worrying.
Simone~ we have to all get clear of the funk. I’m going to attempt to shower today. My week back on treatment makes me so tired so I nap a lot. Well see if it gets done. Sending hugs!
Mae~If October is part of this funk, let it be gone. I used to love October also. Never realized how the pink would make me throw up in my mouth after diagnosis. It’s enough already for sure! A little more than half way through.
back to bed with me! Early nap. Then shower.0 -
I do think the pink October crap does have a lot to do with the funk. It’s a constant reminder.
Mel,
I was thinking about Muddling also. She hasn’t posted sinc 9/22 when she said she was in bad shape. I’m also worried about her.
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Morning all. Good to see so many posts when I logged on.
Girls we need to get out of the funk !!!! I know, but how? My emotions are all over anymore. Right now I feel like " Today will be ok." Cool, sunny fall day. Love October and always have. I am not allowing the cancer to ruin October. But then a snap of the finger and I am tearing up and thinking " I cannot do this, I don't want to do this".
Movingsoccermom- Love the cat pic. I am a cat lover.
Tanya- Enjoy your guests. Do something fun.
Ladies--- I challenge us all to do 1 fun thing today. Eat cake. Watch a good movie. For those feeling up to it, get out in your yard. Go out to eat. Plan something fun. Whatever. But enjoy life for a little bit at least. The small things. They are big anymore.
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I'm joining the October funk. I'm frustrated about my ANC that keeps dropping into the danger zone. I'm in scanxiety waiting for PET on Tuesday. I'm mad at my friend, who does not have MBC saying. You don't have liver pain because it doesn't have pain receptors!!!! What!?!? I'm mad, just mad. I'm worried that my increased pain in the liver area means my tumors are growing. My decreased breath sounds in my lungs makes me worry about my lung mets. Plus I had a oxygen level of only 91 at the hospital on Tuesday. Plus I've had a feeling of tightness in my chest. My BFF thinks that's my heart. UGH. So I went to my PCP yesterday. EKG was good but doc wants a stress echo. UGH. And so does my BFF. I don't but it has been over 3 years and I am 71 so I guess I'll have it.Grrr💞
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Oh yes! On that funk train my friends!
For some bizarro reason my insurance is denying my ibrance. Typically it would be in my hands by now as I start a new cycle on Monday. But all is quiet from every direction. I need to call my MOs office. I am sure missing a few days is not a huge deal but why on earth would an insurance company deny a patient with a life threatening disease a medication that is working for them
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What Philly? Like just out of nowhere when they've been paying for it already? This is fearful and gross! Movingsoccermom I am really scratching my head at what happened to you! Yikes!!!! Nobody called you about your insurance coverage for your ibrance or that your referral was cancelled? I would have been livid. My friends in the South have a way of telling someone you are livid with them, while sounding sweet as sweet can be. It's a skill I never learned. I hope you both get your meds ironed out.
Grannax ugh that's indeed the 'this is too much just leave me ALONE!' feeling
Candy when EVER I'm crying that is exactly what my inner voice is saying. 'i can't do this, i don't want to do this' During the middle of my Ibrance treatment period in July when things were looking up I felt a lot of confidence about doing this. I would think "hey I AM doing this" But right after that I progressed on two scans in a row and that knocked all the wind right out of my sails. Right before this last scan I saw my tumor markers going up and I started trying on the idea that Ibrance was not working any longer and I could feel myself deflating and having anxiety. I'm guessing that might be the case for you as well?
Hi dutchiris! I saw on the Ibrance thread that you had stable scans. Let's keep that going!!! I think I was picking up on that thread that you were hoping to see some regression. But stable is a really really good sign. I never got that on ibrance but I gave it a good six cycle tryout and now I'm on to something different.
I think October gets to me becuase it isn't about the real breast cancer that actually takes it's target. I am seeing pink ribbons and tutus and hockey rinks dyed pink and I'm thinking 'what fun. if only I were having that much fun' I know I'm making a large generalization but I'm somewhat thinking that it all looks like a big party or game that I'm not really part of. It highlights that I have advanced disease, not the pretty kind. That along with this stupid family issue, and my progression and having to start new medication - i'm just funked up this week. I feel a bit better today and took my first aromasin. Next week's the afinitor. Your ANC should be 1.5 on afinitor so they're having me wait an additional week before starting that. So in all I've only been off all treatment for one week. I'm glad to be starting something/anything now though. I have new mets at L3,L5 and into my iliac, all of which are starting to hurt.
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Ok so maybe my post was too la la la. Too upbeat.
Grannax- Sorry your ANC is too low for chemo. And I understand the scanxiety -- I have CT on Monday. And I am sorry you are hurting, have decreased breath sounds and low oxygen level, and scared. You have the right to be in a funk.
Philly- Insurance companies are royally stupid. What the crap !!!!! Why deny your Ibrance now??? My MO office called me to tell me my insurance company denied my upcoming CT and my MO had to do a peer to peer phone call with the insurance company. They did ok the scan though. But why deny a Stage 4 patient to have a scan to monitor treatment?????????????? Especially when the CT's are all the imaging I do- No PETS, No MRI's, No bone scans. Only CT's every 3 months.
We all have the right to be in a funk. But I do want to enjoy at least 1 aspect of my day. Get Joy in something.
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OMG I got roll called! Hi everyone! I am traveling but I am here and sending my best wishes to everyone. I am in massachusetts under the "bomb cyclone" but all is well and I am snug inside. Yndorian, I know-- it can be hard for me to feel ok commenting sometimes too.
Here's a suggestion for anyone in a funk:
https://www.youtube.com/watch?v=jJvjWh2Vhu4
Lots of love from SB
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LovefromPhilly. I am screaming at your insurance company from here. I told my husband its time for all healthcare CEO's to be lined up in stocks and rotten tomatoes thrown. This is absolutely appalling and I hope someone comes to their senses quickly. Certainly these challenges are not helping the funk! Sending you cyber hugs while you are fighting this battle.
Grannax. Cyber hugs as well. So sorry to read about your struggles with numbers. Spinach/Kale/red meat? according to google (personally cannot handle spinach or kale, but bring on a good grass-fed beef burger!). Goodness, this is just so unfair.
Candy. I so appreciate the suggestion. I may collect the gang (DH, DD, DS) and head to the hot tub this evening.....if I can remember how to turn on the heater! Still, a great idea that I will implement somehow today. It is helping some, that DH has dug out all our October/Halloween decorations. We have pumpkins everywhere--almost looks like a pumpkin patch, although indoors, since the winds here would destroy them quickly. Still sorting out how to weigh everything down enough to keep them in place during the wind.
Micmel. Thank you for your enduring efforts supporting this thread. It takes much time and effort and I greatly appreciate it! Once we get unpacked it should be easier for me to chip in more regularly. Gosh, I had no idea how much we had accumulated in 38 years of marriage/traveling/moving, not to mention DH's mother dying and he is an only child. It has taken us 9 years to be ok with getting rid of some of her things. For so long it felt like we would be giving her away, and I just could not do that, and DH was WAY to busy at work, or deployed.
Dutchiris. This is a wonderful group of ladies and I hope you find support here in the 'living room'.
Tanya. Thank you and enjoy your friends!
Illimae. Your trip pictures are such fun and I can't wait to see the next ones! I am so glad you are three years out and I am hoping that you will have 30 years out as a minimum.
Moomala. Good wishes to you as you start a new treatment. Fingers crossed for great results! And goodness, if changing treatments isn't something to cry about, I don't know what is!
Hoping your day is better Simone.
Booboo, good luck also with your new treatment.
Everyone. Best wishes for some orange fun to knock out the pink funk!
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GOOD NEWS!! My insurance and MO's office finally worked it out. Ibrance is on its way, being fedex'ed overnight! Whew!
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YES!!!!!!!
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I'm just in a funk because of the cool weather. I love hot weather and since my weight loss, I absolutely abhor temps that are below 85. I empathize with all of you that are on the funk train due to progression, med changes or whatever the reason.
Moomala- I post periodically only the A/A thread; this month marks my one year on Affinitor. No longer on Aromasin due to mutation. Truth be told, this medicine was very hard on me for many months after starting (started out on 10mg, now on 5mg). I am also diabetic so I had to start insulin due to soaring blood sugars. Probably my biggest SE was the weight loss. A total of 40 pounds. I haven't been able to gain back a single pound and I still struggle to keep from losing additional weight. I previously wore a size 12 in pants, now I wear a size 4....and they are still a bit baggy in the butt area! I have scans at the end of this month and I am praying for stable since I have adjusted to the Affinitor and no longer have any serious SE's.
Praying for you Grannax, Micmel and all other's who are going thru a rough period.
Angie (masonsmawmaw)
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Santabarbarian- Good to hear from you !!!! Post more often if you can.
Moving- I am not a hot tub gal. But if you are, go for it. Enjoy the family tonight !!!!!
Philly- Woohoo !!!!!
Masonsmawmaw- Praying for your upcoming scans, your blood sugar readings, and your weight loss.
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