My Husband, My Life, My Love, My Family, My Cancer
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Sondra~That is pretty darn cool! Interesting what you can find out. I know that Tina Fey is from Pa and it’s right down the street from my town. Funny how they kinda start small. Like us peeps!
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It's been so long and I almost feel like an intruder! But I know that's not the case...
Saddened to read that two more have fallen....boy, could we all hate MBC any more?
I am doing OK. On fourth cycle of Taxol and stable. It does beat me up a bit, but am coping.
Been mostly following along and pulling for each and everyone as we struggle through this damnable disease.
Heading to Asheville NC on the 20th with my sister and two best high school friends to see the city and Grove Park Inn national gingerbread house contest. Been a gingerbread house maker since age 12.
Pretty cold here in Maine, wood stove is going. Put greens and winterberry in window boxes today-a tradition I love.
Thinking of you all, and sending positive vibes. may the force be with us.....
Love, Mary Jane
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MJH~You’re darn Right that is not the case at all!!!!! I am THRILLED to see you... I think about you often , as one of my OG crew.... I am so glad to hear you’re holding your own. I guess that’s what we all must do. We have no choice but to push ourselves to do what we can. Taxol, I wasn’t allowed to have, but abraxane is similar for sure, just not as many pre Meds. I love seeing you here. Welcome home. Hugs my sweet friend!
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Tanya, I finally have a bona fide laundromat at my house. I have my portable washer, my panda spin dryer to get all the water out. It is bigger than the spinner in the washer so I can wash 90 per cent of my blankets and sheets. The final piece was the Panda compact dryer. I LOVE it. Soft towels again after so long. The huge fuzzy blanket gets a generous laundry spray down with fabric softener and water and steam treatment. Then I tumble it in the dryer to remove cat fur. Almost as good as a washing machine can do. Very happy with my system and I get a good workout since I have to move the washer and spin dryer out of the tub to shower. They each weigh almost 30 pounds. After my shower, they go right back in the tub. Works well overall,
Mae, that certainly is scary with the gas, glad that nothing happened from it.
Wow Sondra, interesting neighbours you have. I hope you get your house too. Fingers crossed.
I did not do much today, laundry of course and some knitting. DB, SIL and niece came to visit. They brought hot chocolate and donuts because goodness knows, I needed more sweets, ha ha. Was nice to see them. SIL also gave me extra yarn. I have only just started knitting within the last couple weeks. Just banging out dishcloths. Not sure how adventurous I will get. Thank goodness for youtube since I always manage to forget process for casting on and then casting off. I do find the knitting relaxing though.
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Mae wow what a crazy gas leak situation! So glad it’s all under control. Isn’t life something? I always say, life is so damn funny and crazy and sometimes it’s a little boring but I promise ya that something exciting is just around the corner!
Hello friends! 👋🏼
Been a little while since I’ve posted
Today was first day off in a week pretty much except Tuesday. I had a great and busy day. Moving a little slowly right now but maybe because of the colder weather and shorter days?
I just finished the show Euphoria and now I’m officially in love with Zendaya! Wow she’s sooooo cool and gorgeous!!!!!! 😍😍😍 beautiful actress!
Off to see my MO in the morning. I’m not expecting anything too exciting. Just a regular monthly check in. I’m going to request some scans since I haven’t had any since end of May....we are going over 6 months here and I’m cool with that but I don’t know if I feel the confidence yet to go down to once a year. Probably not until I have hit 5 years. I don’t know why that number sticks in my head as the goal, but that’s what I have chosen!
Hope everyone’s having a good night and sleeping well hugs
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Just popping in to say Morning to all.
Sondra- MBC keeps us busy with medical stuff. Almost like a full time job. I am stable on Ibrance for now, so I see my MO every couple of months, scans every 3 months, Xgeva, Lupron, and labs monthly. But others have chemo, rads, etc. I am glad I retired from my career. When things get worse and I have more appts I cannot see myself working full time. I don't think my job would have accommodated that kind of schedule---I know they wouldn't. My supervisor balked when I wanted off 2 hours to go get CT one day.
MJHJAN1014- Good to hear from you. Enjoy your trip. Have fun.
Hi Mara-- Nice to have fluffy towels. Enjoy the home laundry. And hot chocolate and donuts---YUM.
Philly- Hope your MO appt goes well. And get some rest.
Hugs to all.
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Hi MJHJAN Nice to see you again! Asheville is one of my favorite places. We've been there numerous times. I hate that the downtown area has turned a little brew-pub heavy which has taken away from the older days feel of earthy/eclectic. There are so many more younger folks than older (brew pubs), not as much cool shopping (brew-pubs took over spaces) The last time we went we thought we'd stay somewhere further out of town but we did not end up in a very awesome place. BUT!!!!! The gingerbread house display is something I've always wanted to see. And there are still the art galleries there including the old Woolworth store turned into a must-see multiple artist gallery. I could to to the Biltmore over and over again. I absolutely love it there and we never ever go to Asheville without visiting at least once during our trip. And now it's so much bigger with a new hotel (and probably a brew-pub haha) Do not miss Sunny Point Cafe and Early Girl Eatery for breakfast in the city. DH and I have two weeks off at Christmas and are considering a road trip to Asheville and then to Virginia before hitting Philadelphia to visit my sister and maybe drag Mel and Philly out for a cuppa somewhere. Have so much fun - I hope you will share some gingerbread pictures!
Philly I have not started Euphoria yet. My sis said the first few episodes are a little rough but then things really get great. I'm watching Season Four of Man In The High Castle. And finally getting started on the book Where The Crawdads Sing this week. I'm so damned happy that Ibrance is treating you so well and that you are thinking of what you might do at five years. THAT is super encouraging! I still miss Ibrance and feel disappointment over it's failure in my case but I'm getting better and maybe one day I can be on it again for a longer period. My friend here is seeing that five years coming too and although she's been on four treatments, Ibrance has lasted her the longest and she is so encouraged by it. Her doc is ready for her to extend the scan intervals but she is not.
Since we're talking of knowing celebrities, my connection is(was) Phillip Seymour Hoffman. I will just leave it at that. Huge loss.
Helen Mirren sounds like a bit of a snot! But I guess when you can...be a snot. I'll never forget way back when my daughter was little I took her to see an ice show with Nancy Kerrigan and 14 years old Michelle Kwan. I was able to get DD back to meet the skaters. Nancy Kerrigan was awful to the children but Michelle Kwan was absolutely a jewel. My kids have never forgotten how gracious and open she was.MRI later today. I still don't have results from the first one but I think they're waiting for this second one to review and make a surgical decision ( or not - little do they know I plan to visit several other opinions)
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I'm playing catch up on this thread. I've been super busy with my sister here, Catwalk and mapping for y90. Wednesday will be my next procedure and I'm kinda nervous about it. I don't know anyone else on BCO who has had a second y90.
I'm doing the what if thing. What if my liver doesn't like a second round of yittrium? What if it affects my liver function? My IR did find an unusual abnormality in my liver when he did the mapping last week. It's called Arterial Venous Fistula, artery to portal vein. It's not supposed to be there and will have to be fixed, embolized. It rarely happens after y90. I'm tired of being rare. I want to be normal. Evidently, AVF can affect liver function. Grrrr He says he will wait until after my y90s are healed to fix it.
The Catwalk was fun but exhausting this year. I'll post some pics. There were ten Survivor Models, many of whom I'd never met. My sister walked with me. She is four years out from BC and double TRAM. That was really nice to have her here on the runway with me. We shared our handsome escort.
I'm not able to do any chemotherapy while I'm having the y90s done but I am taking Faslodex shots. I will be off of chemo for at least 3 months. Praying my lung and mediastinal lymph node mets will stay stable during that time.
Hi to everyone and I hope you all are doing well.
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I’m so sad to hear about Muddlingthrough. I just read the message from her son. So sad for her family.
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My sister, Jacki. The SMGLOBAL Catwalk was held at the Frontiers of Flight Museum in Dallas. We both walked the runway as Survivor Models for Say Yes to Hope
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Grannax~you and your sister are just beautiful. What an honor to have your sister there with you. Of course you're exhausted, dealing with all of this upcoming surgery and worries. You're amazing. You sure do represent. Thank you for being such a trooper. That's what team FU cancer is all about.
Philly~ I have seen the entire first season of Euphoria and I love it and I love Zendaya. She's gorgeous and talented. It is a fast paced show for sure, but shows the difficulties of addiction. I recommend watching it to anyone else for sure. It's awesome. I can't wait for season two which HBO did renew. Oh yeah! Good choice.
Moomala~ in your pocket for second MRI. What we all go through. Unreal honestly.
Candy~ Hello to you this morning. Rainy here. Yuck Nap day? Ahhh who knows
Waving to Mara!! 👋. And Mae.
And yes losing Muddling. Is certainly Shitty! Damn disease F**k off!
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Grannax, beautiful photos indeed. You inspire me with what you do.
I am feeling pretty crappy with a cold so instead of resting and feeling sorry for myself, I have loaded up on Buckley's and ibuprofen. I am also making myself walk through the day, more slowly. I figure that should keep my mood up and less time for the woe is me thinking I tend to do when feeling poorly. So far it is going well. May have to keep doing all day. One or two songs at a time. Maybe it will also prevent the cold from turning into pneumonia. We will see. My body has been flirting with whether or not I actually have a cold, I could spend 24 hours feeling bad and then better the next day. Don't know if this is the same illness or another one. Glad I don't have appointments so I can avoid possibly spreading the germs around the cancer centre.
Mel, waving right back to you as well. Hope the weather improves for you.
Moomala, always in your pocket, I made up some movie theater popcorn with lots of coconut oil and flavacol salt. It turned out perfect for us I must say. Will satisfy while we wait.
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Grannax - you both look fabulous! What a lovely dress - such a great color!
Moomala - I'd heard that about Kerrigan being a massive bitch (remember that comment after the Olympics when she was at Disneyland riding on the parade float?
) so I guess not surprising. Do you and your daughters still watch ice skating? I was reading an article about how the jumps have become so athletic and require such a certain precise physical balance that its only the young teens that can do them and then they wash out of the sport right at puberty. I miss the days of more artistry - I once ditched French class with my friend to see Oksana Baiul and Viktor Petrenko practice in Las Vegas after '94. The speed they skated on that tiny hockey rink was incredible - its not really captured on tv!Mara - I hope you feel better soon, nothing worse than doing the is it/isnt it tap dance (and praying it isnt!). I am rather thankful I don't have to go into the office right now because it is Sick City in there with a choice of cold or a nasty bit of flu.
Candy - hoping once we get things into a stable place I can have routine monthly maintenance-only like Philly
Work is being way, way supportive (part of their mission I guess) which is great but kinda boring too. I also have long term paid leave I can take if needed, but since we are coming into the slow period and they are arranging things given the back issue and testing, Id rather not use that just yet if I don't have to. Just gets kinda... lonely at home. Like my whole life came to a screeching halt and I was shunted into this alternate life where there aren't fun shows or parties or carefree worry about my career etc. It really sucks, Im missing another show this week and cant meet up as usual with friends visiting for it. Its like watching the last bits of my former life, things planned when I was fine, dribble away. 0 -
Sondra, I don't blame you wanting to avoid the office contagion. None of us need that for sure. I can also empathize with home being kind of lonely. I spend most of my time at home except for appointments. I am OK with it for myself because I have never gone many places. I will see a movie next month soon after it comes out as I do enjoy movies, but get groceries and most other supplies delivered since I don't like winter. My walking is just what I do inside. Keeps my mood up. I also have a volunteer that calls monday to friday to make sure I answer and I enjoy talking with her. She also asked if she can call me outside of the service as she enjoys talking with me. I said sure, was flattered she likes me so much. She just can't stay on long when doing the checkin call as there are others she needs to call. My facebook visitor has not been available for 2 weeks so thinking that she is too busy for what she volunteered for. I will allow one more week to go by and if nothing is set up between us, I will ask for somebody else. I may also ask her what she is available this week when feeling better in case it is just the day that is a problem for her. She has 3 jobs so I imagine having to carve out time is hard. I will wait until tomorrow to message her about a time. If she can't come up with a time that works for both of us, I will ask for somebody else.
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Moomala- In your pocket for your MRI.
Grannax- In my prayers always. BEAUTIFUL GOWN !!!!! And you are one beautiful lady !!!!! Inside and out, I can tell.
Mara- Sorry you are feeling under the weather. That time of year, woohoo. Everyone coughing during our church service yesterday. I don't shake hands during this season, and I wore a mask yesterday. Don't like to, but want to stay as healthy as I can.
Sondra- I totally understand "Like my whole life came to a screeching halt and I was shunted into this alternate life..." YES YES YES That is how I feel. Unreal. Hard to explain to anyone other than the ladies here. My life as I knew it stopped, changed. Some days, some moments, I have trouble dealing with the changes.
Riding the emotional roller coaster today. This morning's post upbeat. Now, feeling the depression coming on.
Man, this hand we were dealt is hard.
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Candy, I am sorry the rollercoaster is on a downward spiral this afternoon. I hope it will start going upward for you soon. Nothing worse than the depressive feelings ciming on you when the day started well.
I tried to rest but am not used to napping so that was a bust. Just going to keep walking and see what happens. I really want to be sad and depressive as I do worse with commonplace ailments but trying really hard not to fall into my usual thing which is feel sad and sorry for myself and wind up feeling worse than I already do. There are people here dealing with so much more than me, I will keep trying to be better.
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Got away without a nap today, so I like that. Straighten up a little, did my DD's laundry. I enjoy folding and the smells of fresh laundry. It's a pet peeve of mine. I can't run out of items for laundry or I can't handle it. Just something I've realized I can do and it keeps me busy while I watch my favorite shows. I've been bitten by the renovation shows and am loving flip or flop. I enjoy seeing all the remodel shows. They all give me ideas that DH most likely won't enjoy lol. He's very handy but not here enough hours. Which I hate. (Lanie) you certainly understand that!
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Here is my Grandpuppy all Grown up!! He still remembered me. I was thrilled! 0 -
Mel, what a handsome boy he is.
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here he is as a puppy! They grow so fast 
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Thanks ladies for all the compliments. Say Yes to Hope is an amazing Foundation. If any of you are interested, there’s a number I can share. They give all types of support to stage IV patients, not just beautiful gowns. They have retreats and there is the New York Show. They just want to help us live with this disease. Suzanne has a wealth of knowledge and support. She wants no one to go through this alone.
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Grannax ~ sounds like a wonderful organization, wish there were more of them around.
Pots~ haven’t heard from you or stillivin.... thinking of you both Hoping they all is well with you both my friends. Miss seeing you around.
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I ordered this for my sisters birthday and had it delivered for her saturday. It was the first time in 16 years I was able to do that.....ending the estrangement makes me feel lucky. I missed having her around. She said they made her day. Otherwise it wasn’t a good day for her. Her family is a challenge to say the least. With one child/30 year old flopping back and forth from jail. She tries so hard. Wanted it to be special for her. 0 -
That's a beautiful arrangement, Mel. How lucky your sister is to have you!!
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Boy, when you miss a day on this thread, stuff happens! As always I am behind the 8-ball but follow along with all of you. I know if I don't swing by and say hi I'll get trouble from my girl, Micmel.
Have a mamm coming on Wednesday and I am tense. Really tense. My boob has been hurting like mad the last several weeks. It's probably just a flare in lymphedema which is painful in my breast. But still, you know where the mind goes. I recall that very first mamm that said, either that's scar tissue in that boob OR there is active cancer that was not all removed, birads 4. That mamm messed me up. That mamm is the one playing in my head now. Yes, the mamms that followed gave me the all clear. But did they? This is the brain bullshit that never goes away.
Love, hugs, hope and healing to all.
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Sounds like you need the apron with aaaaaaallllll the pockets there, runor. I think mae had it last?
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Runor,
I’ll be on pocket duty. I’ll bring the hot chocolate and donuts.
I no longer get mammograms; onc said I don’t need them. But not every onc thinks that way. I hope you carry us with you and know that support is here. I’ll be waiting with you until you get results.
God bless
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Runor Hi!!!! I will be with you there for the mamm. Stupid thing. Since you have pain is there some further diagnostic that would be called for here??? Nothing ever shows up on my mamms. If I feel something I have to go right to the ultrasound. Anyway - get yourself to Wednesday, get the result and then we'll have a glass of wine or something ok? I'll join you. I love wine and try to hold up my love for it until weekends, but I'll have a Wednesday wine just for you!
I got my lumbar MRI results yesterday. My compression fractures are stable YAY!!!!! I was super happy about this. Multifocal lesions. Good times. Lots of bulging discs. I was ready for that. My PCP tells me that many people my age have that. At L4 I have severe foraminal stenosis which is compression of the canal where the nerves run. This is likely what's causing my problems right now. I have consulted Dr Google about this and it does not sound good. If that nerve is so compressed that it dies, I could have some quite serious permanent mobility issues. I have sent my ortho a MyChart asking him to set my mind at ease about this. Let's hope he replies. He is a MyChart hater.
I had the thoracic MRI last night and I did not enjoy it one single bit. I got a little panicky even though I had taken a xanax and had my eyes covered. The sound really bothered me last night. Interesting. Last week's lumbar MRI was so easy and relaxed. Last night was really tough. It shows me to always take that Xanax even if I think I don't need it. You just never know. I know not everyone is bothered by MRI - the claustrophobia and the sound were just hitting me the wrong way last night. I got through it thank goodness.
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Moomala, I've only had one MRI in my life and it was not breast cancer related. But I was pictured from my armpits to my hipbones (here in Canada they only MRI the area that they need to look at, and what I had was considered a large area to cover) so I was in the tube for quite a while. The tech asked me if I wanted a scent patch. A what?! A citrus or lavender scent patch that she stuck on my arm. I was freaking out but figured okay, let's go with citrus, since she seemed eager to use one (they had only just got them!). I was surprised how that amazing, zingy, bright, sparkling aroma floating through that tube really took a LOT of my mind off the procedure and focused on wanting to eat a big, juicy orange. You might try a little cotton ball with some sort of beautiful scent on it (essential oil?) taped to your wrist or upper arm if they'll allow it. I think when on sense (smell) is over engaged, another reaction (fear, tension) is a little pushed into the background. It did remove my mind from th situation at hand somewhat and take it away to fresh, green places.
As for ultrasounding, they do not generally ultrasound for pain. My onc told me that breast cancer doesn't hurt. He's full of shit. It was PAIN that drove me to have that fateful mamm in the first place back in 2016. Pain that was unrelenting and undefinable with no central or recognizable spot of origin. No lump could be felt. I didn't have a lump. I had a spider web. But it was hurting. One of my last ultrasounds the tech commented (as they are NOT supposed to do) that my breast was extremely full of fluid. Thank you lymphedema. I don't know why my breast would suddenly flare with painful lymphedema - but that's what I'm hoping this is, while fearing that it is something else. It's all a mind game. I just keep telling myself that if I have to ahve breast cancer, having it IN THE BREAST is the best case scenario.
I will be taking you up on that wine offer. Open to everyone else who wants to enter the wine sipping (straight out of the bottle) that I intend to do once this is over. Love to all.
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