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Life does not end with a stage IV diagnosis (really!)

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  • claireinaz
    claireinaz Member Posts: 691
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    Hi all, I need a bit of encouragement today. I've been doing okay at keeping my spirits up but lately I feel them slowly sinking into some despair because of my MBC ILC dx (which feels kind of hopeless—if you can't see the growth on scans how do I know I'm not destined for death later this year), and the fact that I have no idea if the Faslodex and Verzenio are even working. I've been on them for 5 weeks. It's hard to stop imagining this hobgoblin I'm carrying around in my body isn't snaking its way quickly to other places.

    I know I'm still only two months into this new reality but frankly I'm having a hard time believing what I wrote in my sig line. Sigh.

    I also had a super dizzy experience two nights ago where I passed out for a sec in the bathroom when I got up to pee. My oncology team isn't too concerned and tried to dx it as orthostatic hypotension and I know both Fulvestrant and Verzenio cause dizziness but passing out (first time ever) felt a little like death. Everything went black and I woke myself up hearing me hit the bathroom door (nothing was bruised or broken). I broke out in a cold sweat because of the anxiety when I realized what had happened. Since hydrating a lot more and taking electrolytes I'm feeling back to normal. Oncology told me to lay off hot yoga for two days. I did and am going back today since it relieves stress and gives me something to do with my mind other than ruminate.

    How do we ever embrace life when life is so fragile and uncertain (more than it was before) anymore?

    Claire

  • chicagoan
    chicagoan Member Posts: 1,005
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    Claire- Cancer really brought home how fragile my life is and none of us knows the number of days we have left. There are odds, mortality estimates but no one knows. For me, this has helped me to embrace life more than I did before I had cancer. Now I feel like I really try to live life to the fullest to the best of my abilities every day. Passing out would be super scary but it sounds like it might have been to dehydration. One of the Cancercare info sheets I got when first started taking Ibrance said to drink 72 oz of water a day. I do that and think it helps a lot with side effects. Hope that you can find a way to live fiercely in the midst of the uncertainty.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
    edited February 2
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    Claire,

    Chicagoan gives good counsel! Since you are still new to this diagnosis, you are still in the busy, stress inducing initial entree into the world of mbc. I make no guarantees but many of us do get to a place where we enjoy everyday life, both the big and small moments. Most of us don’t get back to what our lives were like before mbc, let’s be realistic about this, but we adjust and flex as needed. There are times when that flex seems too great but that often passes.

    None of us know, not even our MO’s, what the course of our disease might be. I’ve had 12 progression free years which could have not have been foreseen and I keep going back to something my mother used to say: Don’t borrow trouble.

    While it’s likely impossible to banish all the “what ifs…” from your mind try to deal with currently known facts . No one has a crystal ball. Take care

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited February 2
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    claire, you get good advice from chicagoan and exbrnxgrl. One way I embrace life is to try to keep things simple. I learned to do less of what I was doing out of obligation. I decluttered my house. I reassessed relationships and stopped putting energy into ones that were not working. I started creating better boundaries with others so that I was getting my needs met rather than neglecting mine to meet everyone else’s needs first. I try to add more fun in my life however I want to define that (travel, food, books, hobbies, etc.) It’s all a process. Sometimes it’s small baby steps, but small daily changes over time produce results. When life gets messy again, I repeat all the above. So it’s an ongoing process. I don’t have to live big, but I like living more meaningfully. A slower pace helps me do that.

    I take a small daily dose of antiaxiety medicine. It’s something you may want to discuss with your doctor. I worked with my pcp to find what was right for me. The medicine keeps the anxiety in check so I’m able to have quality of life, to live more fully.

    There was a recent, unexpected death in my family that I’m still processing. Yes, life is fragile. I read that the opposite of uncertainty is not certainty, it is open-mindedness. We don’t know what the future holds, we can only take things a day at a time knowing shitty things can happen but also being open to the possibility of good things, too. Wishing you all the best.

  • olma61
    olma61 Member Posts: 1,027
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    Claire, I had a dizziness episode early in my treatment. I didn't pass out but I was unable to walk for a few hours due to the vertigo. I drank pedialyte and called my doctor. My MO sent me to the ER and had the ER order a brain MRI for me. Nothing was found.

    The ER gave me IV fluids, said I was "probably dehydrated", it was summer and I am on a diuretic for hypertension. It has never happened again.

    Scary events sometimes turn out to be nothing. Maintaining your water intake as Chicagoan suggests may be a good idea.

    On getting through the days, do not let cancer and anxiety rob you of the good days you still have ahead. Someone I follow on social media says "Gonna live til I die". Yep, that's me, gonna live every day to the fullest while I can. Take care.

  • brutersmom
    brutersmom Member Posts: 922
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    @claireinaz I have not been on much the month of January. I have seen some really good advice from the other members. I was diagnosed in January of 2023. I was supposed to have knee replacement surgery that month. The ER drs didn't leave me feeling optimistic and the oncologist had there hands full with damage control. I started on Ibrance and Letrozole. By August my cancer no longer showed on my scans. My walking because of my knee deteriorated until I no longer enjoyed much of anything. I pushed until I got clearances for knee surgery. It was a rough ride but I am walking and slowly getting movement back to my normal activity. I have been off Ibrance since December 1. I am supposed to start again February 13th but I am dreading it because I know I will feel more tired. Monday I am finally seeing the Dr to fi d out why my blood pressure likes to drop when I stand up. I finally feel like my PCP is beginning to take some of my non cancer complaints seriously.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Two years ago I had three falls, and that scared me. I don’t remember now if I was on Ibrance I probably was I managed to get myself up for two of them. I got a help I’ve fallen button. I had to use it the third time I could not get myself up didn’t pass out just couldn’t get up. I never take it off. I may look a little dumb in the grocery store with around my neck but I don’t care so last week I landed on my butt Saturday night in a restaurant and I was OK. There was a couple of guys there that helped get me up, last Sunday, I went down again and hit the help. I’ve fallen button the EMTs were here less than 10 minutes. It’s not a cheap thing to have but if I do go down again, I can poke the button and be checked out. It gives me a sense of security cause I’m by myself spooky not gonna be able to get me up also notifies my daughter that I have used the button and since nothing really serious has happened to me. I don’t know if they would tell her to come up here to my house or just notify her that I use the alarm doesn’t matter she knows , I think anybody that widowed divorced whatever should have one of these especially with cancer meds were on

  • claireinaz
    claireinaz Member Posts: 691
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    hi all, your kind words are appreciated. I am still in the early dark place which seems like a place we all inhabit in the first months. But it seems so foreign to me since I was a happy, positive person before…you know what I mean by 'before". I did research on other drugs I'm taking and both imodium and a drug I'm taking for overactive bladder cause dizziness-the second med actually states "orthostatic hypotension" is a side effect. I've been fine since that one episode.

    I just seem unable to believe this dx is actually happening to me. I don't know how to BE with it since I've been thinking all the stuff I've been doing for 13 years allowed me to "beat" it. I'm still going through the motions of taking supplements (not a lot, just ones that scientifically seem to help prevent recurrence) but since I've now had recurrence do I even bother taking them ? Kinda looks like they didn't work after all.

    I also felt a small lump near my lumpectomy scar and reported it to my oncology team. I have an appt Feb. 16 (routine, blood draw check up and faslodex injection so I'll follow up then).Thing is, do we even care about that stuff anymore? I don't know how to do MBC; I knew how to do post Stg. II, but I felt I was "done". Now I struggle to wrap my head around the fact that we are never "done". Do we worry about lumps in our breasts when we have several places inside that aren't going to be removed anyway?

    On top of it, (it's been a shitty week) my casual friend who I met at the yoga studio years ago keeps commenting on how thin I've gotten. I have lost weight-about 10 lbs since April/May, though I'm still in the low normal BMI and I was always on the lean thin side anyway.

    I believe weight loss was due to IBS-dx in June/July and before then I was not eating because most of what I ate caused side effects. Then hub's dx of prostate cancer caused anxiety and when I'm anxious I don't eat. But maybe the weight loss was cancer. I don't know. But the past two times she's seen me she seems to be obsessing about the way I look. She asked me if I've lost weight, and when I blamed it on IBS and anxiety I thought that would take care of it. She saw me yesterday again, and we talked, and then she said "I wish you weren't so thin". Set my teeth on edge. Now I'm self-conscious about one more thing and I've had body issues since I was a teen. Why the heck does she care? Would she say "i wish you hadn't got so fat" if I had gained weight?

    When I told her yes, that I"m eating (I am!), and know I need to gain a bit, she asked me if I couldn't "eat more bread", I mean seriously. I walk through days either on a high, knowing I have a day, or on a low, angry or defeated or anxious, or sometimes all three.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    claireinaz, I hear you about the weight thing. I recently have lost a lot (for me) of weight. Mine was due to the aftereffects of the radiation to my esophagus. Swallowing was so painful I just stopped eating and drinking.

    I get that people are concerned, but some of the comments bother me more than others. Like you said, would they ask, "Are you getting fatter?" I don't think so. Or the comment, "I wish I could lose weight without trying." Makes me want to say, "I wish I could GAIN weight without trying." Sheesh. I will be telling my sister (whom I love very much) to please not mention my weight. She's dealt with weight/body image/eating disorders most of her life. I'm sorry she wants to lose 20 pounds, but comments about my weight are not helpful.

    The only one who can comment on it is my husband. We joke about me being a couch potato lately, and he said I'm more like a couch French fry! Anyway, to quote Bill Murray in "What About Bob?", I'm doing the work, I'm not a slacker, I'm baby stepping. I've been given some different high calorie nutrition drinks, but some of them are just too sweet and upset my stomach. Soups, broths and Greek yogurt seem to go down OK.

    It's good to know that you're safe here. No judgement on weight loss or gain. We're all fighting our own battles and doing the best we can.

    Love and hugs,

    Carol

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    Baby stepping it! What a great expression. Count me in as a member of the involuntary skinny club. I was actually quite scrawny at one point but have gained back a bit of weight.

    claireinaz,

    Your plate is not just full right now, it’s overflowing. Please be as kind and gentle with yourself as possible as we all need to process this in our own way. There is no one way or right way to “do” mbc since we are all so different in the way it effects our lives. I will say that taking supplements and living an active life or following certain food habits to help prevent recurrence is good but it never will be a guarantee against it. I think that is why some are shocked when they recur even after they did “everything right”. While at lower stages we don’t want to find ourselves dwelling on the possibility of recurrence but we need to remember that there simply is no guaranteed way to prevent it.

    My friend, time will be the balm and you will find a path even if it’s not the one you imagined 💗.

  • amel_83
    amel_83 Member Posts: 169
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    @claireinaz

    Me too i got skinnyer after dx...when I get too anxious I don't eat, and i had a double mastectomy so i even look skinnier. Like 97 pound and 5.4 feet...but I just ignore evey comments and weird look at my chest! But I know how annoying can be!

    Some people will comment on you nomatter what...too fat, too skinny, dress too elegant, dress too bad...

    About your dx I'm so sorry, but I always read that people that are succesfull for many years on a med, or stable for yars, have usually a good outcome, and paradoxically, the longer you live with mbc, the longer you have chance to survive even longer.

    I hope you will find soon some stability in your situation, and things will ajust again as they did in last diagnosis

  • claireinaz
    claireinaz Member Posts: 691
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    I love you guys. xxoo

  • brutersmom
    brutersmom Member Posts: 922
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    claireinaz, I used to be very thin and people would say those things all the time. In menopause I gained weight. After my initial diagnosis with cancer I joined a gym that had a philosophy that when you walk in the door you were in a non judgement zone. Encouragement and positivity were all you heard from the coaches and if they heard anything negative rental corrections and rephrasing was what you heard next. It is such an encouraging place.

    You will get out of your dark place. Give your self time and stay active. It will get better.

  • brutersmom
    brutersmom Member Posts: 922
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    Today I celebrate 4 weeks since my knee surgery. This surgery is not for the weak but neither is cancer. The last couple of days I have been in and out of a funk. I have been working to get stronger and things are improving. Injury to my medial ligament from before surgery is just slowing me down but that is getting better. Today though I saw some significant improvements with simple things like getting in the car, getting sneakers on, walking. Sometimes it the little things that make you aware of how much you are really improving. My biggest issue is fatigue. The oncologists is taking over managing that. My red count is coming back way to slow. I am still off Ibrance but he is thinking if I am going to red count is going to have to be taken more seriously. At least the pain Inhave had for the last year is gone. Now to get back to my new normal.

  • divinemrsm
    divinemrsm Member Posts: 6,191
    edited February 6
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    brutersmom, I just wanted to mention that when I was on Verzenio, a CDK inhibitor like Ibrance, my red blood cell count gradually tanked over the nine months I took it. The drug was rough on me and when I was taken off of it, rather than the red blood cells bouncing back on their own which the onc thought they would, they continued to drop the next couple weeks. This caused severe shortness of breath which sent me to the ER. I ended up having a blood transfusion and started feeling better almost immediately. Most women seemed worried about low white cell counts while on the CDK inhibitor, but my issue was the red blood cells.

    Other than that, it is great hearing of your improving healing and that your pain from last year is gone.
    *
    *

  • claireinaz
    claireinaz Member Posts: 691
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    Brutesmom, here's to feeling a little better (knowing there may be a few setbacks) every day. My husband had his knees replaced and the recovery was tough, but he is walking like a 25 year old again.

    We have a major winter storm on our way—could be up to 20" all told, by Thursday night. I am not a snow person but am grateful I am teaching online this semester and don't have to worry about getting down to the univ. Using my full-spectrum "happy" light for SAD helps; I expect I'll use it a few more times between now and end of storm.

    I went through my drawer and donated all my bigger size jeans since they look pretty baggy-ridiculous on my frame now. I figure that for sure NOW I'll start gaining back weight and I'll want them back, so it's like a magical action for me and will help me gain weight (ironic grin). Though if I don't, who cares. I'm low normal BMI, and trying to do as much eating as I can. Problem is all the stuff that makes people gain weight—I don't like. It feels wrong to eat a bunch of unhealthy high calorie food.

    More good news I'm latching onto: my CBC labs from last week were all normal-and the oncology pharmacist who checks in regularly with me regarding side effects from Fulvestrant and Verzenio celebrated them with me too. I have lab draws every 2 weeks; it's my MO's protocol at present. My neutrophils and white were a little low normal, but historically since 2011 I've been followed regularly with CBC tests my white count has been a little low. It seems to be typical for those who eat little to no meat or dairy. And may very well just be my own "normal". As well, my sodium is a little low and that is my own "normal", always has been since I've been getting blood tests. So I am happy about having someone tell me I'm normal, even if it is a blood test.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    Ah, the wardrobe adjustments… it took me far too long to overhaul my wardrobe. When I realized how awfully big everything was, and looked terrible, the purge started. TBH, I also had a lot of things I no longer wore so the results have been satisfying.
    As for eating, my strategy has been to keep nutritionally dense foods that I can reliably eat in the house. Yogurt (full fat) has been a go to as have nuts and dried fruit. My mo and I talked about this and although no one is suggesting a diet solely consisting of sweets and baked goods, we agreed that eating whatever is appealing is better than dropping anymore weight. Have there been days when the only thing I could eat are a few spoonfuls of ice cream or chocolate pudding? Yup and I feel no guilt about it at all. This may not be the time to focus entirely on a clean diet, as your body still needs the calories even if they don’t come with the biggest nutritional punch.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I agree with X Bronx there are some days when eating just isn’t gonna work. I keep applesauce, Activa yogurt in the fridge at all times nuts, I don’t have any chips in the house. I do have some sweet stuff but a lot of times when food isn’t an option lunch or dinner just might be one of those little bitty cups of applesauce and Ensure. Eat what sounds good when you can you’ll be all right.

  • pirate_girl
    pirate_girl Member Posts: 31
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    A while back, I lost a fair amount of weight (for me) and just was having a hard time eating/ finding anything I wanted to eat - a nutritionist who gave a webinar at the cancer non-profit that sponsors my support group recommended the NY cheesecake diet - pretty dense calories and nutritional value; also the crème brûlée diet. I also went for milkshakes. On the flip side, I am on steroids currently to address lung issues w/ my Enhertu Tx - my pulmonologist was concerned about increasing my dose due to side effects such as weight gain and increased appetite- I laughed- I said bring it on - I can’t worry about weight gain when I’m trying to survive.

  • brutersmom
    brutersmom Member Posts: 922
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    @divinemrsm my old oncologist kept telling me my fatigue was from low neutrophils and my chronic knee pain. I knew my red blood count numbers were always low but he said they were never enough to worry about. After surgery, I slept a lot and was having issues with dizziness. I still have to watch when I stand up sometimes I get dizzy. This has been going on since middle of last year. My blood count went lower after surgery. I was looking at my labs and I noticed that they did a blood test on the 11th of January. I honestly don't remember them doing it. I remember the 9th but not the 11th. That's how tired I was. Since I have been home I still sleep 9 or 10 hours a night. My new Dr. Is concerned that Ibrance is effecting or has effected my production of red cells or depleted the Iron in my body. My next labs have some additional tests. Depending on those will determine his next recommendation. I feel like everything has gotten more complicated, we are changing dosage on Ibrance to see if I can keep my neutrophils higher. We talked about switching to verenzo but now he has backed off because of the low red counts.

  • brutersmom
    brutersmom Member Posts: 922
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    @claireinaz @exbrnxgrl. Sometimes it is really hard to let go of those fat clothes. Back when I was first diagnosed with cancer in 2015, I lost weight. After treatment I joined a gym. I didn't lose weight instead I built muscle and my body shape changes. My hobby is fashion sewing and I put a lot of time into my clothes so it was really hard to get rid of my baggy clothes. One day I realized if I got rid of all my baggy clothing, I would have room to creat all new clothes that fit. So I did. I will confess, I did keep one shirt. I made it from a fabric I found in New York City, on a shopping trip. To this day, I still love the fabric and design. I have though about altering it but neither I or my sewing friends have come up with any solid ideas so it hangs in my closet.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    brutersmom,

    I have always admired people who could sew. I had an unfortunate experience in a 7th grade sewing class that turned me off to it but that’s another story.

    For me, there were no fat clothes as I was already slim and have always been so. I’m just hoping to stay away from the awful scrawny look I was sporting several months ago. I have gained a little weight but it’s still a struggle.

  • brutersmom
    brutersmom Member Posts: 922
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    When I was younger I could eat anything I wanted and I was still a size six. In college I moved to an 8 and stayed there until my daughter was born. Then I went to 10. After menopause, want to a women's 14. In 2014 I changed my eating habits and dropped 20 lbs to a 14. After I started working out I went to a 12 because I firmed up. Now dependingnon the cut and brand I am a 12 or 14. Sewing sized don't compare to the stores any more. Sometime is like to go to the stores and try on clothes for style. It is really fun in boutiques and high end stores. Between cancer and my knee I haven't done much sewing but the urge is finally coming back now that I have less pain.

  • amel_83
    amel_83 Member Posts: 169
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    @claireinaz

    Hi Claire I hope everything allright!

    I was thinking about your thought on supplements, as I often wonder about myself.

    I think if they worked so well for long time than is probably a good idea to keep taking them! I mean, vit C have a bit of anti viral power, so I eat citrus during winter, but if I take a flu, that doesn't prevent me to eat them...I mean...may be the flu would of be more aggressive or I would of thake two flu instead of just one. Or for example calcium...is good for bones, but if you have a fracture anyways, you should keep having calcium in your diet, as it definitely serve the bone purpose anyways. Doesn't mean is not working...i hope I explained myself!

    I'm only taking turkey tail mushrooms supplement, and sometimes sulphoraphane. What supplements are you taking, if you don't mind to share?

    Thank you and best wishes

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,035
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    OK folks, what normal everyday or perhaps special things have you all been up to? I want this thread to give folks who are stage IV , particularly those new to the dx, the hope that at some point for some of us, life assumes some normalcy even if it’s a bit altered.

    The Super Bowl is on Sunday! Anyone watching? I confess to not understanding football beyond the basics of the game but I live in the heart of 49’ers country. Levi’s Stadium is only 15 minutes from my house (nope, not in San Francisco, but Santa Clara) and the excitement is palpable in the Bay Area. Cars have 9’ers flags flying as do many homes. In truth, I don’t really care about who wins but I will cheer for the 9’ers , of course!

    What are your weekend plans?

  • brutersmom
    brutersmom Member Posts: 922
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    No super Bowl for me. The weather has been really nice and sunny for February. It has been in the 50's during the day. That is supposed to end next week with rain and snow. I have been working my knee. Not where I want to be but it is getting better. I hope to be strong enough to get back to some classes at the gym the week of the 19th for arm classes. I am still tired. My goal is to be strong enough by the end of February to Mid March to get back to my hobby which is sewing. Today I asked the therapist what the goal was for my knee and was told 0 - 120. He suspected I had some other thoughts. I told him I would like to get to 135. I would really like my 145 back. He suggested that I could probably get to 135 but suggested that I take the 145 off the table as the knee is not designed to go that far. Anyway the more movement I get and decreased swelling the more excited I get for spring to come.

  • irishlove
    irishlove Member Posts: 527
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    Fond of Andy Reid, so I'm rooting for Chiefs. However, if it was the Eagles, well sorry Andy. I did my magic today on gathering all cosmetics, medications and OTC items and cleaned house. Threw out expired, condensed, realigned and wow pleased with my project. I can't garden by pulling weeds, so I've got to do projects so I don't feel so darn worthless. Next project are closets. Gonna be a multiple day event and I'm due for next cycle of Ibrance Sunday, shots in my poor arse Monday and Zometa infusion Monday plus blood tests. I may have to wait until later next week on that project. Maybe taxes, yuck.

  • seeq
    seeq Member Posts: 1,128
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    I recently took a trip to Florida to visit friends during a motorcycle event. While we didn't get to last- minute cruise afterwards, as we had hoped, we did casino hop on our way back to Texas.

    We are thinking about a trip to San Antonio in March. I'm having family company in May, and we have two more trips on the back burner. I may not be able to do all the things i used to, but I'm moving. I'll stop when I have to.

  • chicagoan
    chicagoan Member Posts: 1,005
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    It's Theatre Week in Chicago with great discounts on performances so I am taking full advantage. I went to the Symphony tonight and am going to a choral performance tomorrow "Music to Accompany a Departure" and then am seeing a new opera, Champion, on Sunday. I will probably watch the Superbowl Sunday night but am not very interested in football or Taylor Swift😀

  • sf-cakes
    sf-cakes Member Posts: 572
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    The number of illegal fireworks that will go off in this town if the 49ers win... not looking forward to that possibility! I used to make a sheet tray full of nachos for my husband and I to watch the game with, but I've lost interest in football since he's gone. I'm sure we'll hear cheers from neighbors up and down the street.

    Still recovering from spinal surgery less than two weeks ago - my Mum's here with me, and we'll be doing jigsaw puzzles, watching Father Brown reruns, and eating pizza! Looking forward to being fully recovered by April, as I have a great seat at the symphony to hear Yo-Yo Ma play. So good to have something wonderful to look forward to.