My Husband, My Life, My Love, My Family, My Cancer

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  • santabarbarian
    santabarbarian Member Posts: 2,311

    Candy is there nobody on the social committee or similar at church that you can talk to, re the event? It seems so easy to do an outdoor component before or after the meal. For the safety of immune compromised parishioners who wish to attend.

    Simple as a bonfire and s'mores for dessert. Or have a tree-planting ceremony beforehand as part of it..... or anything open air.

    If the church was aware that the indoor aspect is excluding people who would love to be there, maybe they can make an adjustment?

    Wishing everyone low SEs and lots of small pleasures.

  • candy-678
    candy-678 Member Posts: 4,176

    Santabarbarian- Good ideas for a larger church. But ours is a 50 member church in a small town. Yes, there should be a lot of people there for the reception because the Pastor has been a minister for many years in our area and also held a position on the National Board. So I am thinking a lot will come by from all over for the festivities. But, really, there are only 3 of us members that have active cancer. Of course I don't know of others that may want to attend but do not want to due to Covid risk. And the "social committee" is just 1 person that usually heads up these events and then others that jump in to help--- cut cake, refill the punch bowl, etc.

  • micmel
    micmel Member Posts: 10,057

    Jen~ haven’t heard of it! Making a note now! Thank you.


    thanks ladies for caring. Pocket duty available!

    Mae~ very well said. Still don’t know if I could manage without being sedated heavily. I’m claustrophobic.


    hi Goldens, Emac, SeeQ,I write. 💐

  • mara51506
    mara51506 Member Posts: 6,516

    Pockets for Mae, Kitty, Candy and Mel as you all need them. Goldens, you will be busy, sending energy.

    After an extremely sedentary weekend of surveys and stuff to add cash to my budget, going to walk today. Warmer so my new clothes will not be suitable since it is warmer. Kind of a T shirt wearing walk for me to and from the grocery store once laundry and breakfast are done, may go twice to get the almost 20000 steps before it is dark. Might go to a different place to get premade lasagna and other meals to combine with what I am already eating. Trying to add more tastes to my diet while allowing me to say cut a small individual lasagna in two or three pieces and add the blackbeans and some extra cheese and spinach. Also need cat food so this needs to be a trip of its own so I don't exhaust myself. I must also make sure I am not storing too much in my freezer unless I break down and my another one to keep in the living room after dryer is paid off its payment plan. I've moved alot of the stuff to empty drawers in the bedroom. Using the old dryer to hold the heating rack and an end table and putting some existing wicker storage baskets on top.


  • elderberry
    elderberry Member Posts: 1,068

    So I don't miss a name: :Pocket duty for scans coming up. Fingers crossed for those waiting for results.

    mae: Good Grief. That contraption looks like some medical experiment from the 19th Century. I freaked out so I cannot imagine how bad it was for you.

    No nice weather here for walks. It is still up for study if the unusual water spout on the ocean made landfall as an actual tornado on Saturday. Footage showed leaves and debris blowing around in what looked circular. It was more on the west side so we just got a lot of blowing. No climate change, eh?

    I spent the weekend clearing out my upper kitchen cabinets so our contractor can sand and prepare the boxes for the new doors. Trips to the Salvation Army. Sad to see my multi coloured Fiesta dishes go., but some things had to and I haven't used them in years. And just how many coffee mugs do I need? At the back of the second shelf I found a pale green glass Irish Coffee mug emblazoned with dark green shamrocks and KELLY GIRL 1985. Yup - I was a Kelly Girl. Travelling typist, filing clerk and general dog's body. Finding the cup gave me a few flashbacks. I'll keep that one for sentimental reasons.


  • sunshine99
    sunshine99 Member Posts: 2,723

    Elderberry, KELLY GIRL??? I haven't thought about that in years! I had a roommate who was a Kelly Girl and found a permanent secretarial job through that temp job assignment. Wow. That's a cup worth keeping. ;)

  • illimae
    illimae Member Posts: 5,739

    I never heard of a Kelly girl but had worked briefly as a temp after high school. I googled it though, interesting how it all got started.

    MBC zoom group is starting in about 45 minutes, if anyone is interested :)

  • mara51506
    mara51506 Member Posts: 6,516

    Elderberry, heard of Kelly's girls in the 80s.

    I wimped out of walking long distance outdoors, was prepared to have another rest day after a short night of sleep made me feel unwell after breakfast. Just rested there a few minutes and pulled my big girl panties up and decided I need to get 7 miles a day of speed walking 1/2 to a mile throughout the day at home. Put down a yoga mat and burn rubber on the spot, much faster than outside and my arms get more work as well. I am no longer chained to step goals so much as mile goals and doing it this way breaks it up, keeps a steady supply of energy and really helps get me ready to do stuff I do not want to do, even though sunny, I really don't want an outdoor walk, will spend part of young and the restless getting some of those1/2 or whole miles. I am sweating buckets. Feels almost like a low impact jog if I am being honest.

    Something to hopefully make people smile, especially the song at the end. Helped me out some this morning.


  • chicagoan
    chicagoan Member Posts: 1,065

    Elderberry-My aunt was a Kelly Girl and absolutely loved it. She made it seem like a glamourous job and would get dressed up for her various assignments. Your story brings back happy memories.

  • tanya_djamila
    tanya_djamila Member Posts: 1,541

    Good evening ladies,

    Mae that head gear would make me have a full fledged anxiety attack. Wow just wow. I understand your first reaction. We are humans!!Definitely in the crowded pocket for you this week. Missed the group today. I gave a talk at a local school for breast cancer awareness. I didn't wear pink.

    Booboo please keep us updated about your new med regimen. This week is really a treat for us Floridians who stay here in the summer.

    Mel an ibrance break sounds great. I hope your mouth heals soon.

    Tomorrow I'll be going to NY to visit mom, daughter, sisters, etc. I had my third vaccine back in August and was sitting tight waiting to go visit them when their numbers (covid) were low and tickets were cheap and also in between treatment so I wouldn't be all side effected up. I'll check in with you guys all week but won't be posting much-maybe.

    Take care all

    Tanya

  • chicagoan
    chicagoan Member Posts: 1,065

    Hope you have a wonderful visit Tanya!

  • micmel
    micmel Member Posts: 10,057

    Tanya~ be safe and enjoy your visit. Visiting family is where it’s at. I enjoy spending time with my kids so family visits are like medicine when my baby girl ( who is 26 )stops by.

    BooBoo ~ thinking of you!

    Mara~ those little guys are adorable a good little smile. Thanks for sharing 😄!

    Elderberry~ I think I may just be on the cusp of the age to remember Kelly girl. I’m going to ask my. Mother. It is very vague my memory of that phrase.

    Sunshine seems to remember that as well. Funny how phrases take their turns and then fade away. I do remember Mary K cosmetics and the pink Cadillac. Gobs gobs of make up in a row in a pink attaché case lol door to door. It was a big deal then. Lol.

  • katyblu
    katyblu Member Posts: 223

    Mae, wow! That looks like a medieval torture device! I’m so sorry you have to go through that. Cancer really sucks! Definitely in your pocket, with all the leftover Halloween candy!

    So far so good on my pain medication switch. No nightmares so far and I haven’t had to take an IR yet (fingers crossed 🤞🏻). I’m still having a little body twitching but it’s not as pervasive as before. I’ve managed to get out and walk a few miles over the last few days which was nice. I’m getting blood work done today, hopefully my levels are back up so I can start cycle 3 tomorrow!

    Thinking of all you ladies and wishing for happy Tuesday for everyone.

  • mara51506
    mara51506 Member Posts: 6,516

    Well, after a very depressive weekend and day with very little walking done, I was so sad and felt exhausted. Went to the grocery store about 40 mins away. The music and new heavier shirt with a hood were enough. Got everything I needed. My knapsack was heavy but after a bite of my granola bar, headed home. Slow going up and down some minor hills, got home fine.

    What is the point, I really need to fix my own depressive state re my weight, telling myself I'm exhausted, which I am but is self defeating to me. No way to live with fatigue and no reason for me to cry. Old habits that need to die. This song makes me happy and actually makes me clap along. Feeling better. I actually did not get tired with the heavy knapsack either, no more excuses for me.


  • livingivlife
    livingivlife Member Posts: 454

    Mae- When I saw the picture WOW. I guess it is a torture method that a person goes through for this disease.

    Tanya- enjoy your visit with family. I see my family maybe 2 times a year.

    Speaking of family we had our special son out for the day yesterday. We pick him up in town which is 45 minutes away and bring him out to our house. After lunch it was such a beautiful day I took him for a walk on a nearby trail. He is so funny because he will stop and turn around to head back. I keep aiming him to keep going to a certain spot. When we do actually turn around to go back he starts to walk faster. Halfway back he stops to give me the biggest hug. That is my happy place when he gives the biggest hug and smile.

    When I speak of town that is Charlottetown which is our biggest "city " on the island with maybe 40,000 people.

    Wishing everyone a good day with leftover Halloween chocolate bars for pocket duty.

  • mara51506
    mara51506 Member Posts: 6,516

    OMG, I feel so foolish, I have felt like a bit of a sore throat, kind of coldy feeling for a good few weeks now. The sore throat is long gone, but contantly feel like there is something to clear out. Checked my Buckley's meds, I have taken a cold relief one but one that stops extra coughing and I have not bee coughing much. Now what comes up is green and gross. I will obviously switch to the expectorant to clear it out and that should clear what is in there. My nose is still clear but I do think I had a cold and did not get rid of anything. I'll report back after a couple of days. Don't think there is infection, not yellow or anything but want to make sure I clear the green stuff. Looks like I need to go to a few places this afternoon.

  • 50sgirl
    50sgirl Member Posts: 2,071

    Mara, That sounds miserable. I hope you have a speedy recovery with the expectorant. I always admire you for all the walking you do. I thought I did great back when I walked three or four miles a day, but that pales in comparison.

    Mel, I hope that your mouth is improving. I had never heard of anyone having that burning sensation. It sounds painful.

    Mae, I will be in your pocket this week. You are brave to tolerate that contraption during the MRI. Of course, I realize that you have no choice. I hope all goes well and that the results are good.

    Tanya, Enjoy your trip to NY. I am sure your family will be excited to see you.

    Candy, I am glad that the nausea is a bit better, and I hope it continues to diminish. I know how much you miss going to church, but I think you are wise to stay away. People do not socially distance there, and there is no way to tell you is vaccinated and unvaccinated.

    LivingIVLife, it sounds like your time with your son was really wonderful and special. It’s great that you had that time to share.

    To those of you who are moving, more power to you. Although moving to a new place is exciting, the work before and after the actual moving day can be exhausting and overwhelming.

    Katyblu, i am happy to hear that your new medication is working better. I hope the improvement continues.

    Elderberry, I remember Kelly Girls. I hadn’t thought of them for years.

    I know I have missed many people, so hello everyone.

    Hugs and prayers from, Lynne



  • mara51506
    mara51506 Member Posts: 6,516

    Lynne, nothing pales in comparison to my walking. 3 or four miles is plenty for sure and should be celebrated. I make myself go as it feels better mentally and physically. Getting ready to go out for some stuff this afternoon, need granola bars and also more expectorant meds to clear out what I kept hanging around. I have a feeling that once it starts clearing out, the fatigue will go away.

    Mae, you are still in my thoughts, may the week go superfast so you can get this over with.

  • moth
    moth Member Posts: 3,293

    HI everyone, checking in from momentarily sunny Vancouver. Chemo & immunotherapy were last THurs & Fri and from Fri evening on I did very little, resting tons and watching shows. I still walked all the days but in between I was mostly horizontal & half dozing.

    On Nov 1 dd & I started watching the xmas hallmarks. We have a whole watching schedule lol. I'm also watching a couple nordic mysteries series on netflix.

    By yesterday I was feeling better so it's really just a few days out of every 21 that wipes me out, so that's not too bad but I feel I'm not bouncing back as well as I used it.. I'm still trying to finish my xmas shopping and we're rearranging some things around the house so my to do list is getting longer & longer and I'm crossing off fewer things. I feel i'm getting behind every day... oh well

    pocked duty for everyone, esp mae. That stupid head frame is awful. you deserve cake and pie and all the goodies in the world after going through that crap

    hugs

  • trishyla
    trishyla Member Posts: 698

    Hey, moth. Glad you're enjoying the Hallmark Christmas movies. My husband was the sound mixer on about 35 on them. He did so damn many of them, usually in July or August, that by the time the holidays finally rolled around he was so sick of everything Christmas. He hasn't done one in five years, so we can actually play Christmas music in our house again.

  • illimae
    illimae Member Posts: 5,739

    Moth, I am definitely having cake! Next week is my official 5 year cancerversary (11/16/16) and we’re gonna feast at Cheesecake Factory. So many options…

  • mara51506
    mara51506 Member Posts: 6,516

    Moth, enjoy your cake for sure on that day. Only one year behind my dx which MO still says I was Stage 4 from the start.

    I will be having a birthday supper at my older DB, nephews are working that day but I really was not expecting anything. I requested a turkey breast, stuffing and all the fixings. Not a full turkey dinner but a reasonable facsimile. He is also making grasshopper pie of which I plan to take a few pieces home.

    Feeling better on this side of the day, signing off for my earlier bedtime, feel like I could stay up but don't want to. Have to kick the cats out first.





  • katyblu
    katyblu Member Posts: 223

    Mae, that is my favorite celebratory place! I went there when I finished radiation on my first dx. And I went after the bone biopsy that diagnosed my bone mets (not so celebratory but comforting). So many tasty things to choose from!

    I know there’s a whole separate thread for anger but I know y’all will understand. So I had a PCP appointment today, my first time meeting my new doc. I’ve been dealing with an increased heart rate since July, not sure what’s causing it. My MO did an EKG 2 weeks ago and said it was normal. Well at my PCP appointment today, they did a new EKG. My doc was concerned that I may have a pulmonary embolism or at least that I am risk for one so he wanted me to go to the ER for a work up and CT scan (I’m military so the clinic and hospital are right by each other). I go to the ER and sit there for 4 hours with a scan in the middle. ER doc comes in to tell me there’s no blood clot (yay!) but that the scan showed some progression of my spinal lesions. And he said it very bluntly. Automatically caused me to cry. I guess the doc then realized what he said and then told me “Well I’m not your oncologist and it’s not a final report, you’ll still have to follow up with your oncologist and get a PET scan. But it showed slight progression. And I have to do my due diligence and tell you this.” I’m just so angry and sad and depressed and angry. Thankfully I have an appointment with my oncology nurse practitioner tomorrow to hopefully start cycle 3. But if what the ER doc says is true, then what’s the point? Of course I’ll be a wreck tonight waiting for my appointment tomorrow. Sigh…

  • illimae
    illimae Member Posts: 5,739

    Katyblu, I get the anger and sadness but it might be the doctors delivery of this news that is the bigger problem. “slight progression in bones” is not often seen a a very big deal overall and depending on how slight, you may still be considered stable and continue as you are. Additional tests will tell the story and I understand him feeling the responsibility to tell you but the official word is your MO’s. I’ve found sometimes what I thought was a hit, ends up just a hiccup. I wish you excellent luck.

  • moth
    moth Member Posts: 3,293

    Katyblue, well, bone mets are known to be hard to image and measure & who knows what 'some progression' means. Since you're early on in treatment, maybe it just hasn't had time to work yet. Chemo kicks in right away but targetted therapy & hormones can take longer. Hang in there & hopefully you'll get a better idea tomorrow of what is happening.

    hugs


  • Kikomoon
    Kikomoon Member Posts: 358

    Katyblu- I would have reacted the same way you did. I’m so sorry he delivered that news in that way, especially since it’s something you didn’t expect. Hopefully it’s just a hiccup as Mae says and you can continue on with your treatment. I know it will be hard to sleep tonight, but I hope you can relax until you can have more insight from your MO.

  • GoKale4320
    GoKale4320 Member Posts: 580

    Katyblu - sorry you received this shocking report. However, I am guessing the ER doc didn't have another scan to compare with this new scan so maybe what he saw was bone healing.


  • kittykat9876
    kittykat9876 Member Posts: 420

    Katyblu, I know exactly how you're feeling, I've had the same thing happen and he was totally wrong but it sent my anxiety through the roof, try not to worry until you talk to your MO.

  • katyblu
    katyblu Member Posts: 223

    Ladies thank you for your reassurance. I think I was just shocked by how he said it and how semi-callous he was. I had my appointment with my NP today and she reassured me a bit. Apparently the new scan doesn’t have any measurements so how do you even identify slight progression? We aren’t changing anything about our treatment plan right now and I have a PET scan on 22 November so we’ll see definitively then. My NP did encourage me to put in a complaint against the ER doc and I think I will. He needs a better way to relay information, especially to cancer patients. Anyway, I really appreciate y’all! I knew y’all would understand

  • mara51506
    mara51506 Member Posts: 6,516

    Well, fuck is all I can say. Our little aparatment building has sold to another property manager. I knew this was trouble. Well the new property manager walks in and wants me to move out by Jan 31. I am on disability and t he only reason I can pay for this place is utilities are all included and I can usually bump up my surveys to 200 or so dollars a month. I am not convinced my health is good enough to handle a job. I am going to work with my brother because this is NOT 3 months notice and if they renovate, they will try to jack up the price of this place, and not sure if they can break the lease. My mind is so confused. Not sure what to do.

    I am in a panic attack about it all. Rents have skyrocketed in my city and housing takes forever to come through.