My Husband, My Life, My Love, My Family, My Cancer
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Ha, ha, kombucha. My son loves it, and he is one to get the good stuff. He had me try it once and I made a horrible face and emitted all the “yuck” “bleh” and “eww” sounds! We both had a good laugh, and now it’s a bit of a running joke between us how much he likes it and how much I don’t. What I do love is that I have a wonderful, honest relationship with him and didn’t have to pretend that the kombucha tasted good to me.
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Divine~. “It’s better to be hated for you are, then loved for who you’re not”
Honesty for sure works. May not always be easy. But it’s better. I’ve been never tried the kombucha. Even sounds a little scary lol I can’t even say it.correctly. But I need something decent to drink.
It 911 ladies. I am sending our sincere heavy thoughts for the families effected to sit and think that today any child would be at least. 18.... or over 25 or older depending on the age they lost family that awful day. Never any words. Tolerance is what this world needs more of again. People need to be reasonable, treat how you want to be treated.
I got out of bed today and it took me a good ten mins to be able to even walk without pain. The anti hormonal chemos kick my bones rear end. Stiff arches in my feet. Ugh! Everyday I can isolate a new cause of my pain. That’s another nice thing about being on a break from treatment. It’s a gamble for sure. But I can totally feel the difference!0 -
For all of our GOT fans. Sooo true. I found a lot of funny ones I want to share as well !!! 0 -
Mel, he definitely looks like Khal Drogo. Khal Drogo could probably have made short work of those hyenas too.
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he really really does !! And I agree. I have more funnies to share. I have to laugh, because if I won’t ill think of all the crap we deal with and then I’ll cry 😢! So let’s laugh my lovely sisters lets laugh!
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Candy. I don't know why your MO is not concerned about your C2 mets . I was told, way back in 2000, I that it was a critical area because without C2 /3, you will stop being able to breathe, plus become paralyzed. Of course,, I know it depends on how bad/ how big that met is. Also, whether or not it's responding to TX, etc. Also, times
and TX have drastically changed in the past 20 years.
I do get that liver mets are much more concerning than bone mets,in general. But, I still think location of bone mets should make a difference, should be monitored. Quality of life counts.
Maybe you could ask your MO why she's not monitoring C2 and tell her your concerns.
Tanya. I would be so angry about that incompetent person who got the orders wrong for the MRI. I think she should have to have two MRI's and become aware of how painful and stressful that is ! Especially, since you have to endure so much more to even get the contrast in. Good grief. I need a Margarita just thinking about it. LOL
You all know I'm praying for each of you but I'm just not as good as others about remembering each name.💞
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Oh gosh, so much happening for so many.....thinking of all of you.
Tanya-what a royal pain in the toosh to have to repeat the damn MRI. I want it over NOW for you, with GREAT results.
Mara-it really bugs me that you are losing a special support person. Seems unnecessary.
Mariane-speedy recovery from the surgery and may you feel total pain relief after healing
Micmel-so the Ibrance is laying the cellular assholes to waste? I cannot think of a lovelier scenario. I hope you are the poster child that lives to be 95 with NEAD. I think it was Curious that posted on liver mets thread about a new drug that may help prevent cancer resistance to Ibrance. So it may be something down the road to add in with Ibrance or allow some of us to try Ibrance again.
Grannax-you must be anxious to get your house back together- are things improving on the gem/carbo? That back pain sounds ugly.
Divine- My DD consumes a lot of Kombucha, and I was afraid to try it. I went on a food tour in Portland(Maine) and we went to a fermentory and I found it to be quite refreshing! I haven't started drinking it regularly, though. My DD tried making her own and I could not stand it on my counter when it looked contaminated, so i made her dump it.
Minnie- Oh how I wish I was visiting beautiful Spain this fall! I hope you are feeling comfortable....
Gumdoctor- how's the chemo going for you?
I know that I am missing some folks, but every MBC sister here has my love and good thoughts.
My DD, who is 33 and lives with us, has started back to school for X-Ray Tech. She is liking it a lot even though the schedule is wearing her out a bit. This is my gal who has struggled since age 17 with eating disorders and every other nasty addiction you can think of. She has been clean for maybe 4 years? I am immensely proud of her. She has been to very dark places, and though somewhat eccentric, she is learning how to enjoy the simplest of things. My goal is to see her graduate in 2021.
I have lost most of my hair from the taxol, but still have enough not to wear a scarf. It may all come out, not sure. I am getting slight numbness in my feet, which hopefully will not worsen. Stomach uneasy at times, but nothing crippling. Of course two more months before PET. Will be anxious to see what next tumor markers show.
I have planned a little trip for the week before Thanksgiving. Going to Asheville NC with my sister and two high school friends to see the Gingerbread House contest at Grove Park Inn. Being an avid baker and gingerbread house maker, i have long wanted to see them! Also plan on doing the town and visiting with my 95 YO aunt. So fun, huh? Hope the cellular assholes cooperate.
Enjoying beautiful weather here and a bounty of the most unbelievable tomatoes.
Best to each, may the force be with you
Mary Jane
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Hello everyone. I have not had time to catch up, as we finally arrived home yesterday. Very long cross country drive, which was exhausting. We did stop at a couple national parks (first time for DH, second for me), but the joy was marred by the death of our beloved Artemis--18 y.o. kitty cat, who had been struggling with hyper-thyroidism for the last couple years. Bittersweet as my Mom called it, and that was certainly the case. Hugs and best wishes to all!
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hello friends!
Grannax wanted to tell you that you are an inspiration to me as I’m gonna be in a BC fashion show next week!! 🙈🙈 💃🏿 💃🏿💃🏿
Got the results of my neck MRI and here’s the breakdown: Neck MRI is showing a little more uptake of the dye in a couple places. MO says we are in the arena of "not better not worse" which to me is great news!
We are going to follow-up with looking at something called my CA 15.3 which is some sort of tumor markers, which get looked at through blood work.
The last time they looked at my tumor markers was in 2017 when I was first diagnosed in May and the result was 207 U/mL. They then looked at them again in June and they went down to 182 U/mL. This was great, because it showed that the medicine was working and moving in the right direction
(I know most of you know what tumor markers are! Just copied and pasted what I shared with my loved ones)...
Grannax - I feel slight anxiety about those cervical Mets too! I hear they are concerning from a few articles I have read. But no one in my MOs office seems to have an eyebrow raised around it. So I’ll just roll with that for now 💗
Tanya - nooooooo about your scan!!! Crap! I’m so sorry you have to go through that AGAIN. Very annoying!!! But of course you want complete and correct info. I hope the next scan goes smoothly and without any hitches!
Hello and love to everyone else! You are all in my heart and thoughts daily. Such strange times. I go up and down week to week emotionally. This week I am feeling pretty good, and am relishing the good feelings!
Mel those images are HILARIOUS!!!!!!
Hugs to all,
Philly
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soccormom, gorgeous cat!!!!
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I was at my pain management doctor today for a lumbar injection. (I have stenosis and several other conditions which cause lower back pain. I've been getting the injections once a year and they help a lot, until 5-6 months later when they start wearing off.). So I mentioned my MBC diagnosis to my doctor (radiologist) and showed him my liver mri report that said I had a 1.8 cm spinal lesion “most likely in the upper lumbar region." He was frustrated at the lack of specificity as it might impact my pain and treatment with him. He requested images from the main hospital system, and after reading the images, he says the 1.8 lesion is nothing to be concerned about (called it a Schmorl's node, not cancer.). I also had a recent lumbar mri through his office, and he said there's nothing there as far as lesions. So I will be bringing it up to my MO when I see her in two weeks. I know my treatment won't change but I'd like to know what the real situation is. I'm pretty sure I'm stuck with my liver lesions though.
Just thought I'd share, I know you all are good with all the gritty details of our medical visits
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Hi All,
So I haven’t posted because I wasn’t sure where I stand. Saw new Onc today, and I will be changing chemo drugs for sure (Xeloda no longer working for me). I had a PET scan, followed by a CT of the pelvis and lower extremities, and results show numerous sclerotic mets including L5, numerous lesions scattered throughout the sacral, iliac bones, etc. One of the lesions in the right femoral neck occupies half the volume of the bone. So I will start radiation in that area next week. She is not sure yet what chemo I will start next. She’s waiting on some bloodwork results first, and then will let me know which chemo. Ugh! So onward I go!
Tanya, sorry I missed pocket duty. I am so frustrated for you. It’s bad enough to have one MRI, but a second one because of someone’s screw up is just unacceptable!
I’m not sure who else I missed, but I think of all of you a lot. There’s no place like home
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Hi everyone! I missed a lot of pocket duty but it seems I can be in your pockets, Tanya, for the re-do. Sorry it has to be done again.
I'm asking for all of you to be in my pockets. Onc called me today with "urgency". I must report Friday morning early to begin weekly taxol again. You all know that's not what I wanted to hear but I'm not completely surprised considering how I have felt most of this summer. Good bye hair and eyebrows and eyelashes. He says if it helps we "may" be able to go to xeloda which was next up. I hope so. I think. Well, one day at a time.
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Sorry booboo and muddling, sendin good vibes that next steps are easily tolerable and knock the beast back.
Bailey got picked up this afternoon, just in time because I fly to Milwaukee tomorrow. I may not read as much in the coming week but I'll definitely report from the music fest in Chicago.
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Muddling and booboo,
Sorry to hear about your progression. I hope your next treatment works for you.
Mae,
Have fun! Share some pics when you get back.
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Grannax~Hello darling, I totally agree with you that the location of the bone met matters immensely! Mine is located at the base of my
Spine and it really is something else. I spend a lot of the day achey from anastrazole. I hate it. I do know the part of the way I d been feeling was absolutely the hormonal also. Because I still feel like ass!!!! I hope you are feeling better and your home is fixed and okay.
Much love ~M~0 -
MJH😄~Hello my friend! 🌹 I am hoping that the shared sense of confidence we both had together will prove to be true. I have to admit I was doing back flips when he said nine months intervals. Along with blood work. XGeva every three months though. Which I can handle. You’re so sweet for your kind words. I adore seeing one of. My original peeps come home. It warms my heart so much. Hug that grandson for me.. How is his new school year ???
Love ~M~
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Movingsoccermom~ I am sorry to hear about your precious cat and really a family member in my opinion. I am pleased you enjoyed your trip, moms are always right. Bittersweet... gorgeous cat.... so sorry. ♥️~M~
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muddling sending big giant gentle hugs your way ——————> ♥️
One day at a time is a good mantra. I repeat that one all the time in my brain. One step in foot of the other.
Love,
Philly
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Philly~What days do you have off of work for a doylestown gathering?. I would be honored to meet a fellow sister. You crack me up! Please say hello to your mom. Congrats on the lower tumor markers. Atta girl. 😄💙! ~M~0 -
Hi all.
Tanya- sorry for the screw up with your MRI. Grrrrr. Frustrating when things get messed up with our tests.
Mara- Sorry you lost your hospice volunteer. I too live alone and understand the isolation and loneliness at times. Glad you are here with us for support. Can you attend church or volunteer somewhere to get you in a social situation and talking with others? I look forward to attending my church on Sundays and I have started volunteering once a week for socialization.
Grannax- I don't really understand my MO's thoughts on my bone mets either. I know the liver met is concerning, but she seems to poo poo the bone situation. I know the meds are for both mets, but I know from reading here you can have progression in one area while another area is stable. But she seems to think if the liver is stable all is good.
Movingsoccermom- Artemis was beautiful. You will see your baby again, I believe. Love the name too.
Philly- Good that things are no worse with the cervical mets. Where is the fashion show? When? We want to see pics !!!!!!!! So your MO doesn't seemed too concerned about the cervical area either. Interesting.
Rosie- Doesn't the confusion with scan results drive you crazy? It does me. Sorry you are having to deal with each docs' opinions.
Booboo- Sorry to hear of the progression. Crap !!!!!!! Prayers as you learn what chemo you will be using.
Muddling- Sorry to hear of your progression. In your pocket Friday.
Update on me, not cancer. I had a TIA the end of May. I have had twinges in my face a few times since. I saw a neurologist last week and he said Yes TIA's. So I had some more twinges in the same area over this last weekend so I called neuro back Monday. He wants to see me again. Friday appt. I am thinking maybe neuropathy. ????? I would rather have nerve irritation versus TIA's. No other symptoms but the tingles in the face - Left side. Good grief. Prayers requested.
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waving hello to Divine!! How is the porch? The perfect time of the year is coming for it. Soooo jealous!!!
Rosie~ chronic pain can drive you insane, I hope your pain can be managed, I know when mine isn’t I can be really upset which turns into crabby.... one day at-a time, we have no choice. Amazing what we go through everyday together, because here we are holding hands again. 💜 ~M~
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BooBoo~I also have a spot in my femoral neck, it does cause some considerable discomfort for sure. I also have one in my s-1 and L-3 and T-1. I am also convinced I have small areas in my sternum. They said they were too small to measure. I've never heard of that. I haven't been offered radiation and i often wonder why... it kinda odd how each oncologist has a different approach. I am so glad to know you're doing the best you can my sweet friend. Still wish you hadn't moved 🥺🧡..
Much love ~M~
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Muddling~My friend. Get some Big ass pockets girl.....I am holding your hand walking with you to deal with this visit. We all are. I know one day I’ll get-the same call. Freaking cancer. Leave my People alone!!!
Much much love~M~
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Mae~Lol did your house guest get any better? Sometimes dog sitting is just like baby sitting. They never sleep , will be looking forward to your correspondence once again. Safe travels friend ! 💗 ~M~
Waving hello to Simone hope all is well with you and you’ve had a good day. I’m trying to remember if I even brushed my hair. Been a sleepy day for me today ! Hugs
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Candy~I have read many o thread of women speaking of neuropathy starting In the chin. I was wondering if you are on any bone strengthener? Sometimes XGeva causes some strange chin/jaw issues for me..... I am thinking of you very much. That you can count on ! 💖💖~M~
Tanya~with you in your pocket with chocolate!!
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Micmel and Mary Jane, I think our Spanish weather is having a vacation somewhere else! In bed tonight with the sound of thunder. We are told it will be a day of heavy rain tomorrow into Friday, what they call a Gota Fria, which means cold drop! This usually happens in September but later. Oh well, such is life! Mary Jane, great to hear your daughter is doing so well! Well done! So many young women struggle through issues.
Was thinking of all those who lost their lives 18 years ago, so sad.
Off to sleep now! Best wishes everyone x
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Minnie~I love the fall temperatures. I am no longer a fan of summer. I get red just thinking about it. I realized since my break from chemo (brief) I can tell already the heat flashes are almost gone. Bundle up and sweet dreams. I’m not far behind you!
Much love ~M~
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Good evening ladies and thank you all again for the support.
Thank you MJH Jan royal pain indeed. Congrats on your DD's accomplishments. I hope the dark places she's visited push her towards the light places now.
Grannax I was angry but was just so emotional I held it in and talked to a nurse. Just tears and you know if you do have to tell someone off tears are not a good sign of strength. lol Enjoy the extra margaritas on me!
Simone I have to do it twice this time. Deep sigh. I'm just going to show up Friday and hopefully it won't take a long time.
Mara sorry you lost your companion. That sucks. Well now we all know to share numbers if we get a volunteer that we like.
Minnie waving hello to Spain and the gota fria. I like warm weather but mostly everyone on this thread loves the cooler temps.
Candy frustrating and such a horror. I have to get the dye contrast through my port again, eat valiums like M&M's to get in the rocket sized compartment.
Philly love please let me know and see pics and upcoming excitement for the fashion show. This thread is filled with Diva's!!! I hope your MRI results are great!
Rosie 24 I'm glad you can get injections for your back. Are they done in the doctors office? I had steroid shots and they had to be administered while I was under anesthesia. They worked until I fell.
Booboo sorry to hear about any progression with you.I hope the radiation knocks the crap out of the new and old lesions. I hope and pray that The break in between treatments allows you to feel stronger and ready for going onward. Do you know where you will get the radiation? facility? Grannax is bringing margaritas and Mel chocolate for my Friday MRI.
Muddling I'll be there with you Friday for your taxol. What's the schedule, every three weeks? Thats a strong one that usually obliterates C.
Mae enjoy your vacation. Post travel pics when you can. They're always uplifting.
Runor thanks for the marianelizabeth update.
Mel I'm isolating myself today. I don't want anyone to catch the flipping out crying lady when they don't deserve it. Unfortunately I'm hiding out from DH too. I overheard him talking on the phone about how he has to sit in the clankety clank MRI room and hold onto my foot for an hour. I was laughing inside bc it's true and now he has to do it again. He was smart and didn't pass the cancer cure ladies message along.
Divine I do not like Kombucha. I tried it once and it's expensive after one sip I dumped it down the drain.
weepy day for me. My friend took me to lunch at Bazille which is kind of a fancy restaurant in Nordstrom. Once I got home I dealt with rescheduling MRI which will be Friday. Really raw emotions. I had to speak directly to the person who made the error. She was apologetic and kind. I heard the Dr. and PA fuss at her yesterday so I just left it bc all I can do today is cry. There was something on the lumbar spine MRI results that would've been continued and definitive if the other thoracic MRI would've been done the report said edema and fluid and that additional imaging needs to be done. I now have an appt with a neuro specialist just in case for the second week in Oct. So glad you guys are here truly. I am going to NY Monday - Friday my DD has an endoscopy and I found $73 round trip ticket on Frontier. So now she has a babysitter, homemaker, mom to ease some of the stress.
I got a phone call from a friend who I don't hear from often. She has found the cure for cancer and sent the book to my husband which of course he never told me about bc we're both done with that snake oil stuff.
Moving soccer mom I'm happy you had a nice day with your DH a your cross country drive. Sorry to hear about Artemis, beautiful kitty.
I hope I didn't forget anyone.
As Boo Boo said onward.......
Tanya
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