My Husband, My Life, My Love, My Family, My Cancer
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Hey there Livingroom ladies 🤗 It sure was a nice Thanksgiving Weekend. I’m so glad you all enjoyed the time with your families♥️. Dear @irishlove , I hate that you and DH are dealing with so much lately. I’ll be in your pocket when you go for your PET scan.
@cookie54 Hi Jersey Girl😊 That’s great that your daughter is here in NJ too.
@gailmary Hi girl, nice to see you. Belated Happy Thanksgiving.🦃 I hope you gobbled till you wobbled😁.
@micmel I love the way you celebrate Thanksgiving and Christmas by splitting the different days. That’s great!
@bonita.puercita Saying hi with Gentle hugs. I hope you had some peace and healing during Thanksgiving. 🩵we are here for you (in your pocket) as you deal with the loss of your wife during this Holiday Season. Take good care.
Sending loving vibes to @illimae @sunshine99 @intolight @mara51506 @tanya_djamila @threetree @emac877 @sondraf
@sf-cakes @bellelove70 @goldensrbest and everyone else here. Waving 👋 to all.
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Shana~glad you had a nice holiday as well. Christmas 🎅🏻 will be here before we know it. I still have a few things to do, but am mostly finished the main parts. Now to start wrapping . I don’t want to fall behind. I’ve got to do the tree thing soon. DH and I go together , this year we will bring Theo. Hope you have family plans for Christmas….
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Good evening everyone. Oh Christmas tree shopping with Theo, hmmm. Do you pick the one he pees on or the one he doesn't pee on? lol We use to take Rex, our Shep, to pick a tree. The workers would cut down the tree we tagged earlier in the year. I swear it was always a bit more "rusty" looking then when we tagged it. And then the kids recalled Rex peed on it. LOL
Anxious about tomorrow's pet scan. Colitits settled down today, probably because I only ate turkey and spinach for lunch and turkey for dinner. Gee what I'd give for a schnitzel.
Another funny story. I threw the turkey carcass out into the empty wooded lot next door. It was completely gone by morning, except they spit out the onions. haha.
Waving hello and hope it's a good evening and a better day tomorrow.
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So, this year I feel so not ready for Christmas! DH and I always set the tree up the day after Thanksgiving and he does the outside lights the same week on the warmest day. But this year we’ve all had the seasonal bad colds, and even the kids when they came over on Thanksgiving, were getting over colds. My SIL went home from his restaurant sick with a horrible cold. UGHhhhh!,so this week DH has been sneezing and his asthma and sinuses have been driving him crazy. My oldest son is getting over it and, I haven’t been sick with any cold so far, just a few sneezes and asthma, and of course the treatment SE’s, big D and all of that. Just haven’t gotten the Christmas stuff up yet🫤. We’ll get there though. DH just took his inhaler this morning. So I know he won’t be putting any lights up today outside in the cold wind. Any way that is my Tuesday morning coffee rant to ya’ll. 🩵 Have a great day today.
@micmel Funny how the dogs like to mark the Christmas tree 🌲😊. They know exactly which one to pee on because the smell all the critters and bugs that have been there or still hiding in it.. Hose it down and shake it out and leave it outside for awhile before bringing it in. I grew up with natural trees and love the smell. It’s so comforting and gives that Christmas vibe. The weather does too. But we’ve always had the beautiful pre lit balsam faux 🌲 because of molds and allergens in the natural trees. I always hang those natural Christmas scent sticks and burn Christmas candles to give my home a warm Christmas scent this time of year. Somehow the lights, candles and scents give me that good Holiday feeling that stirs the Christmas spirit that I’m just not feeling this morning. I’ll get there though♥️🌲
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Shanagirl, so sorry your family are all sick and you are late decorating for Christmas. I am in bed today very weak...don't know why but I do this occasionally. It is why I put my Christmas decorations up so early this year just in case. I will pray you all heal quickly. I stress when I get behind with things. Stupid I know, but it is how I roll.
Mel, I am allergic to Christmas 🎄 trees. So sad. My family has to do without because of me. So yes, it is candles and scented sticks for my house. Princess ignores the trees that we have up inside...she has plenty outside. Glad she doesn't bother the ornaments.
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@intolight yes I’ve had a lot of those weak days. I totally get it. You just have to give into it when you feel that way. It’s supposed to be mild weather this week so hopefully DH gets the Christmas lights up.😉
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Indeed on the weak days. It’s freezing here today. We had some snow come through but it was just a little dusting. Gone now. The wind is whipping and taking Theo out means bundle up city. Since I’ve been sick. DH and I focus on the inside. I put up a wreath but that’s about it. When my kids were young I went all out to decorate the house outside, they loved it. It makes me sad those times are gone. I used to do it all myself. I miss alot of things.
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Hi everyone. It's 45 degrees here in central Florida. Next county inland is expecting frost and or freeze tonight. I have my fav plants close to the house, so no worries, yet. Foley is happy that mowing season is over. He's still hooked up to a drain and bag. Draining from abscess is slowing down. He will see his GP tomorrow and MO Thursday.
I had my pet scan today. I used lorazepam 1 mg for anti-anxiety and it left me loopy. Got thru the head to toe scan that took 35 minutes, plus the 1 hour wait for the glucose to do it's job. Then I had to go to MO's office for help with Pfizer Patient Oncology financial assistance. It's up to them now to help me. The med receptionist suggests that people change their meds if they can't afford it. I'm guessing she's never had cancer. She was busy, short -staffed and a bit short with me. Guess I'll learn the outcome sometimes in December. Gulp.
Stay warm and hope you didn't have too much snow, in pockets for all with needs. Thank you all for being so supportive and loving.
Laurel
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Intolight, I hope you've been able to just rest today, I understand about having weak and exhausted days. I think our bodies sometimes just say, ugh, not today, let's just lie down.
Shanagirl, so sorry it seems that everyone has a cold, colds are so miserable!
Irishlove, good to hear that you completed your pet scan, hope you can relax tonight. And argh, that comment about just changing meds if one can't afford them...no. Nope.
I'll probably unpack the Christmas decorations we've kept sometime this weekend, and there are two candles that smell like pine trees in there, they're subtle but delightful. It's almost December, good heavens!
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Dear Ladies of the living room
I am grateful you are here for each other. What a blessing to have somewhere to turn when others don't get it. I'm afraid I get mixed up here with a different group I Belong to (not cancer) where we can't discuss our health. I can follow most members here but responding is challenging. Please know that I am with you in spirit and wish you the best always. I continue to read various threads and make my comments when the urge strikes. Some of you write so well. I can't say it any better. You bring more comfort than you know. Thank you for sharing your life with us.
Gailmary
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Hey ladies, just popping in to say hi. My apologies for not mentioning everyone, but I hope those who are sick are feeling better soon.
I saw my MO today. Got my Zometa, Faslodex and got the results back from the Genetic Testing. Positive for the PIK3 mutation. MO said there is a brand new drug just approved which should have fewer SEs than Piqray (which I hear is a real bitch). There are also some possible Clinical Trials available that we can look into.
PET scan on Saturday will give us more info and then I can begin radiation to my esophagus.
I'm just so tired… I know you all get that. Tired, but I can't sleep. This is stupid.
Will update when I know more.
Love to all,
Carol
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Sunshine ~ I understand the tired. I think exhaustion, walking through honey to go to the bathroom your legs feel so heavy . I think of sleep as my happy place. I need it. It’s overwhelming fighting like this everyday, somedays I feel like falling down. I’m in your pocket for tests and radiation. Hugs your way. Sleep well….. I hope.
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Carol, I understand tired too. Mel gave a good description. I was looking at the clock tonight wishing it was three hours later so I could go to bed. I am praying for you everyday, and especially the next couple of days as you get over the Zometa and Faslodex on top of the fatigue of looking at more tests and treatments to come.
I am too tired to even put correct words into how I am feeling tonight, so I will just close. Thinking of all you lovely ladies sending virtual hugs and love.
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Hi everyone. I don't know why I am awake at this ungodly hour, but here I am. In pockets for all your needs and hoping each one of you knows how much I care.
Booty, the persian outdoor cat, scratched at the front door. Now she is deathly afraid of the two dogs, but it's 40 degrees and she popped right into my bed. I put a thick warm blanket outside for her on a large chair, but I guess it's just too darn cold. Maybe the possum or raccoons will make use of the blanket. Threw out the remaining turkey wings and legs for the creatures. They sure ate good tonight.
Our DD has a birthday today. It's getting close to the time she will take our DGD and move to get her family back together again. It'll be sad and difficult for us as we are both ill. DGD lights up this house. Well at least one more Christmas with them to make some great memories.
Wishing you all a warm last day of November and holiday excitement in your home. Our fat little fresh fir tree is up and decorated. Kids did the work this year. A sweet little train is set up around the base and a few Christmas inspired houses, etc. are lit up at the back of the tree. Brings back good memories.
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Morning ladies oh he sleep struggles…they are real. Woke up near 3am and was hoping it was later so I could get up at have a nice hot cup of coffee. Sometimes I feel like a prisoner in bed lol..crazy right? But if I can't fall back to sleep I'd rather be awake and out of bed! The only reason I don't get out at 3am is because Daisy will be ready to start her day too. I did manage after an hour or so to fall back asleep as I hope you all did too!
gailmary Love your beautiful thoughts about the room and they are all so true❤️
irish Happy Bday to DD hope you have a nice celebration together. Sorry to hear they are moving it's so nice having family nearby. Will they be close enough to manage a weekend drive to se you? Your tree sounds lovely! We use to have the train under the tree when the kids were little and they loved it. I can't even count the times I would have to reset it on the tracks for them but great memories too.
Sunshine Glad to hear there is a lil easier alternative besides the Piqray and I pray with that and rads you get the relief you deserve. yes we ALL understand the tiredness and I continually pray for strength daily for myself and all here.
Things going ok here just endlessly dealing with the hand/foot syndrome that comes with Xeloda. Why do the silliest things liked dry cracked hands and splits cause the most pain?? I have been through far worse with all the surgeries etc, so weird. I basically need to order a lifetime supply of Aquaphor and gloves I think lol..whatever right … I'm still here to tell the story ! Saw the RO this week she was very pleased with the way my lung looked after the Rads this summer as I am too. A little breathing room and mental relief for now.
Hi to all I missed , @shanagirl @mara51506 @micmel @emac877@sf-cakes@goldensrbest@tanya_djamila@emac877@intolight to name a few.@candy-678 you popped in my head this week as I was reading old Medicare posts and saw you on there. Hope you're doing ok. Hope everyone has as good a day as possible.
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Hello all.
Thanks, cookie, for mentioning me.
I am plugging along. My scans were stable back in October, with the next scans due in January. I asked to lower the dose of Lynparza from 500mg a day to 400mg to see if it would help with GI side effects. I don't see a lot of change, maybe a little, but not much.
I am staying in a lot due to the winter illnesses going around— Covid, flu, colds, stomach stuff, etc. When I do get out— to get a haircut or get a book at the library— I wear a mask and wash my hands a lot. I do not get out in crowds— restaurants for example. I am not going to in-person church.
I read on here every day. I am sorry to read of everyone's struggles. Life is hard.
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You know what I wish? I wish for a single day where we could all be together—a day without pain, fatigue, limbs that don’t work, digestive systems that want to humiliate us… Wouldn’t that be something?
Thank you for all the kind words and encouragement. The tree with the train and the Christmas inspired houses at the back of the tree sounds beyond lovely.
How can it possibly be the last day of November?
Waving hi to all. You are all very dear to me…
Carol
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candy You're very welcome! Ugh darn Gi issues…relentless, sorry your not seeing a big change. yea this time of the year can be rough with all the germs out there. We just do the best we can to stay "healthy".
Sunshine I love your vision, it would be so wonderful!
Today was an unusual day in our family as we helped my husbands sister move into an apartment. She announced to the family a month ago that she was divorcing her husband of 28 yrs. We are a very close family and have never experienced this so it's a big adjustment for sure. I guess most importantly is her happiness as we all know life is too short.
Rest well lovely ladies.
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I’m sorry cookie. That can be tough. Sending your family love.
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hello to all the folks in Mel's room. Gee I think we need to catch the first star and make that wish for a WELL DAY for all. That would be so wonderful. So much struggling and yet we march on. In pockets for all those who may be in need.
Took an hour out of my life to persuade Humana to help me with Xgeva co-pay of $500 a month. They actually are sending paperwork from AMGEN, the manufacturer of Xgeva and think I may qualify for $0 co-pay. Oh my veins would be so happy not to have Zometa infusions anymore. Lymhadema reared it's head again in left arm, so that only leaves my right arm. I can't, or should I say, shouldn't, have a port inserted. Trouble last time I had one and it was recommended not to have another inserted. Now if I have to go on infusion chemo, then I'd revisit this. But only doing Zometa IV once a month, no use rocking the boat. As for Ibrance, my RX is expired and I have not heard from MO's office yet. I dropped off the paperwork to them to fill out their portion for Pfizer financial assistance. Otherwise, it's $3000 co-pay. Yikes.
On a great note, DH saw his MO today. Still in a watchful state on his WBC counts. So another month until next blood test and holding our breath that he does not have to start chemo for CLL. DD had a good birthday with Champaign birthday cake and an airfryer from us. The cake is soooo good. Publix made.
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@cookie54 , I’m sorry to hear about your husbands’ sister announcemnt. I feel hearing about a divorce within the family is so hard. Especially when the family is close to the ones divorcing. I’ve always felt it’s a great loss like a death almost. I give you credit for helping with the move also. I don’t like any help with moving, it’s stessful and exhausting.
@gailmary Your words about this group are beautiful and very true🥰
@sunshine99 You’ve been throug so much. The tiredness is what we all understand. Hopefully your MO will find a good treatment for you that is easy on you. 💗
My day yesterday was really pretty good. During the last 2 weeks I’ve been just lazying around feeling like hell and looking like it too. So Yesterday I decided to join DH going to BJ’S to pick up a roast chicken, and some other needed items. I jumped in the shower after my coffee, washed my hair, exfoliated my face and feet, then blew dried my hair, put some make-up on and put a nice comfy jeans and sweater and warm flannel matching shirt and it felt so warm & good to get out. We ran into some neighbors who were so glad to see us, and I felt good about myself because I didn’t look like a “dying little cancer patient.” Before we got there I said to DH that ‘I was starving, let’s just stop at McDonalds for French Fries”, which really hit the spot. Then when we went into BJ’s, I saw some of those food stations that have free samples so I picked a cup of berry apple juice which was great after eating all those delicious McDonald’s Fries, then I went and sampled a delicious ritz cracker and whipped chedder with peppers on it…. It was yum, and also a potato and cheeze pierogi sample. So after that it was definitely like I had a great lunhch for the day😊. So while DH took the shopping cart to pick up some heavy cases of gingerale and, other items,I browsed the clothing area and found a cute lavender sweatshirt to add to my comfy tops. Also picked up some pretty christmas lights, came home put the groceries away, folded some laundry in the dryer, played with my little Budgie bird, climbed into bed with my IPad and the Pugs and watched some TV before dinner which was only a glass of Keifer, and then enjoyed the rest of the evening. It was also so nice to later get together with DH for some good lovemaking ♥️ so Dear Ladies in the Livingroom It was a good day yesterday a great evening.🥰. Now today I have the Christmas Spirit and ready for the Season of Joy 🌲😉
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I am sorry I missed a couple of days, read through the posts and in pockets for everyone who needs me at all.
My street is 98 per cent done, we have a bit of a road, they may have to add another layer but who knows, sidewalk and grass are done, no more mud which is great. I missed paratransit, took bus to hospital, was free. Have been eating a lot of fast food and my belly could feel it end of day Wednesday and Thursday, decided I may have to increase the fiber this time. So hard to strike the right balance to avoid D the first few days after Herceptin.
I have to rinse off the salad and deposit in the salad bowl after drying. I did not buy croutons this time but did get a lot of those taco strips, I find them delicious. Probably going to have some beans with a hardboiled egg and wheatbran, chop them up, still comes out like ground beef. Put shred cheese on top on a plate, microwave and let cool, add to the salad. Should be good.
If it stops raining, planning a trip to t he mailbox and some inside exercise. Saw OT in person for the last time, was able to push myself up from the ground easily 3/10 effort vs when started at 8/10 effort according to OT, I feel almost to the point I could practice on my own but will wait for older DB or whoever. She assigned more treadmill which I will endeavour to do and wall pushups too. Still working on my consistency, only everyday I really do is the bridge pose in bed and really stretching arms, legs and hips. May also make myself pump feet from bed before actually getting up for the day.
Hope everyone had a good Thanksgiving and has a good day, as said above I will always be in your pockets lending support as well.
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Good morning, dear ones!
Cookie, I’m sorry about your husband’s sister. It must have taken courage for her to do that. It sounds like your family is close and will be able to support her in her new “lifestyle.”
Irish, what a pain. I have no idea what will and won’t be covered with my new and future meds. Some days I’m past caring. I find it interesting that some insurance companies will pay for IV chemo but not the pill form.
Mara, we’ve missed you! Glad you’re OK. The shredded cheese in the microwave is something I like. If I let it go just long enough, it can be made into little cracker/crouton things. Pretty yummy. On the Saturday after Thanksgiving, we had scrambled eggs and hashbrown patties for breakfast. I ate two patties. With catsup, of course. I could have eaten more, but I only got one package and there were 4 of us. I didn’t want to be greedy—actually, I DID want to be greedy but decided my dad and husband should get the extra ones. Haha BTW, I love the taco strips, too. The Southwestern ones are my favorite. They’re really good on top of chicken tortilla soup. OK, enough food talk! (For now…)
I have my PET scan tomorrow. I bought some really comfortable and not too expensive Amazon Basics scrubs with LOTS of pockets. I can probably fit quite a few of you in who are available for pocket duty.
My report from Guardant360 was 46 pages. Yikes! Good news, bad news, but can’t really make heads or tails out of it, except the PIK3 mutation showed up, along with the ATM mutation. There was some other number of 64.4 on the Tumor Mutational Burden. I have an appointment with Oncology Genetic Counseling on the 15th, so I will ask them about that. Oh, and Scripps contacted me about participating in a Biorepository study. Will see my MO again in two weeks.
Busy times… Love, hugs and chocolate for all.
Carol
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Carol, that's a lot of pages of information! Wow! I sincerely hope there is something in there they can use. I have one pull-on outfit that I always wear for my scans. It always works and is warm.
Mara, so glad your street it about done. Your life will be a little easier now. Yay!
Cookie, I too am sorry to hear of your brother's sister's situation. Divorce always hurts everyone.
Shanagirl, hooray for good days!
Today is not my best. I found myself crying because I didn't have the strength to do the dishes. So weird, and I am not usually a cryer! Perhaps it is time I said something to my oncologist when I see her next week. My DH is leaving for the weekend to travel and do some HAM radio activations. He loves this and enjoys his times with his friends. It is so important to me that he have this outlet. I am careful to look my best so he isn't afraid and can leave me at home. Of course my DD is here in case I need her so it is ok. I played Elf last night and "delivered" the advent calendar because my DD was at work. I am happy that I can do little things with my family. I am sure this will be the last year my DGD believes in the Santa magic, so I will enjoy it as long as I can. I have been creating family cookbooks for my kids for Christmas. I have recipes going back three generations so I hope this will be meaningful for them. It is important to create memories.
Take care dear friends. I pray this day leaves you all in a peaceful place.
Chris
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Sunshine, I've read in the clinical trials thread that a higher tumor mutational burden can make you eligible for immunotherapy. I'm sure there's more to it than that, but I'm going to be hopeful for you! Immunotherapy can be a relatively easy treatment. 46 pages, whew, just shows how special you are. ❤️
Mara, I thought of you this morning when the big tractors came to tear up my street! They are supposed to be done by next Friday, but they did let me drive out to my appointment today. It smells like hot asphalt around here.
Intolight, I'm so grateful that you post about having hard days, it helps me to not feel crazy. I cried when I flipped the calendars in my house over to December this morning. I knew this month would be hard, but sheesh, it's literally the first day of the month!
Sending love and hugs to everyone, I'm going to eat a little chocolate and watch the finale of the Great British Baking show. 🍰
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Hi ladies. In pocket for scans. Hoping everyone is doing as good as possible. Shanagirl, you got it goin on. lol
Bone scan came back in my portal. It's not good at all. Metastatic cancer in right lateral orbital wall. In skull within the left posterior parietal region. More uptake in other spine/hip/femur areas. I am devastated. Waiting on the soft tissue report. In August things were looking so good that MO said no radiation needed. Now, I'm just sitting in my chair shaking and crying. DD and DH sat with me and hugged me. I do not have a MO appt. till Dec. 11 with the temporary guy, I call Dr. Key West. What an awful time to have lost my MO to him moving to south Florida. I need someone to talk me off the ledge.
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Had my ultrasound Thursday to evaluate the tiny hard nodule that appeared on my implant side breast. Was the most comprehensive experience I’ve ever had. The tech spent 20 minutes doing the ultrasound, sent the results off to the in house breast specialist radiologist, who then came in and went over the findings. She apologized for taking so long but wanted to consult with other radiologists. She then conducted her own ultrasound test and physical exam. Bottom line is the ultrasound was inconclusive and referred me to the breast surgery department. She agreed that since there is something there, it will need to be biopsied. The problem is that my implant is very old (2002) and could be leaking. So will need breast MRI. And if it’s not leaking, a biopsy becomes more difficult as it will likely damage the implant. I’m scheduled to see NP of chief of breast surgery on 12/12. Both the NP and BS had wonderful reviews on hospital site.
But with better news my pain management doc performed an ablation to the nerves on my lower right back yesterday. I go back on the 18th for him to do the left side. I’m very hopeful that this will provide some relief to my chronic lower back pain caused by SI joint degeneration. I had to have 2 test cases performed and both gave significant relief. He said it could take 3-4 weeks to see results but I swear it already feels better.Thinking of all of you and hoping that this season will bring some joy into your lives. Went to our local performance of The Nutcracker last nite. This is the second year our 6 yr old GD danced in it. Every year the little dancers move up to more challenging roles. A fabulous cast of local dancers save for the prince who was a hired equity dancer. A wonderful holiday tradition.
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Oh, irish, that just sucks! I wish you could get in to see your MO sooner than the 12th. That seems like forever to have to wait.
Intolight, I'm sorry you cried over the dishes. I think I get it. Some days are just too much. I also want DH to remain involved in his activities like biking and climbing and surfing. It's good for him in so many ways.
I'm sorry for those who are hurting today. This disease is just so unfair…
Off to get my PET scan. Wearing my scrubs with lots of pockets, so I have lots of room for my lovely "pocket duty" friends.
Love to all,
Carol
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Checking into say hello. Hoping all is at least tolerable for all today. I’m almost finished all shopping. Then onto wrapping. I have to make a trip to the dollar store for a few things. But that’s about it. I’m really struggling with what to do for my mom. I want to send her money for her treats. But I’m not sure she’ll even know what to do with it. I could send. Nice blanket for her to have there from me. But I’m afraid to send cash. I can’t send. Card because she can’t go to any store. She can’t walk. So I’m torn on what to do. Sigh. Life sucks sometimes! Hugs to you all beauties!
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@sunshine99 its like a little apartment house for scans! Mara has her own penthouse. Hope things turn out ok.
@intolight I understand that - my hubs is out yet again at another football match this afternoon but it means he gets to hang out with friends and talk about things other than, well, illness then I am happy for him to go, its important he has other outlets. I try to have my upset moments when he isn't home because I don't want him to worry and I know he finds it upsetting too, though sometimes it just comes out. Its the frustration of it all, isnt it?
I mistakenly wrote in the Bone Mets thread about my joyous week with this nasty head cold and I am so done with it. I can't hear a thing out of either ear, and both are releasing water and pus (yes I have started antibiotics) with the worlds worst sore throat. I had to put subtitles on the tv in order to watch anything. But I've been up and about doing things, taking care of some Christmas baking and Ill make soup for dinner. Better to be up and about (not much fatigue strangely enough, no appetite though!) and moving than laying there if you don't have to. I WILL be wearing a mask all winter long after this - Im starting to wonder if I picked it up in the Day Room at the hospital two weeks ago.
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