My (perhaps controversial) thoughts as a "newbie" to CA.

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  • KQHill
    KQHill Member Posts: 50
    edited May 2016

    Trill, just peeking my head in but you might want to take a look at SquareSpace.com for your site. Easy e-commerce and really simple to set up. Not nearly as versatile as Wordpress but I don't want that hassle!


  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi ladies-- Am busy working on my site.....have to take a few more pictures, though, as the first set was blurry and I just ran out of batteries...

    DisneyGirl, I wouldn't think of sending you Tumbling Blocks without the box...the two go together....

    KQHill, thanks for the tip. I've already connected with iPage and it's slow but so far, so good...

    OK, off to Walmart for batteries....

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    P.S. Back from Wally-Mart.....fun as Wally World...

    Since when did batteries cost almost a dollar apiece??

    I almost went to Dollar Tree but think the fast fizzle of the last bunch I bought there is 'cause they were--uh---old.

    Pantaloon just lay down on the remote to the TV...she always gravitates to the remote and then plunks herself on it...so the sound was muted.....I thought No, don't tell me the Dollar Tree batteries that power my TV have also died on me!!! Just kidding... I don't use Dollar Tree batteries in the TV....

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi ladies--

    Well, for better or worse the site is up and running. To access it you go to the address bar on the very top and type in

    trishrawlings.com.

    I couldn't find it via the bing homepage, or through Google. (I don't fit the algorithm or something...)

    Off to bed. Pooped beyond measure. The place is a mess. Miss Panty went in the closet four hours ago and is ignoring me...

    t


  • Molly50
    Molly50 Member Posts: 3,773
    edited May 2016

    Trill, the sidewalk is amazing!!!

  • gerrib
    gerrib Member Posts: 163
    edited May 2016

    Trill. i read your original post as it is what I have been thinking about my prognosis etc. Have to die of something and have thought of all the terrible things and with 85% non recurrence rate at 5 years (estimate I have decided not to do chemo . I was offered chemo but not overly encouraged by oncologist. I just wanted to know if this thread still relates to your original post or has it moved on to more domestic discussions as I am interested in the original topic. I am 65 and I have just had BC (primaries) for the second time.


    Gerri

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi gerrib--

    This recurrence I know must be a very scary thing for you and I'm sorry that you're going through this now. It's something I know most of us, at various times, must think about. I'm a triple negative, where the risk of recurrence is high, so I know how this must have affected you when you found out...

    I hope it's gone for good this time!

    Like you, I elected not to have chemo. I'm content with that decision and become more so each day as I encounter people who ask how I'm faring and who after I tell them of my decision then go on to agree that chemo isn't for everyone. Most of my friends are in my age group and a few have said they'd do the same and forego it. Some have shared stories of their elderly parents or relatives or friends who had a rough go of it with chemo, which they withheld telling me about while I was in the deciding phase.

    That first post was about should I just let cancer take over and let death come as nature was more or less ordaining it. It was one of the heaviest--if not THE heaviest--moments I've faced in 72 years. Alone and scared, I reached out to this site and the wise, sweet, funny, and good women here who taught, shared, consoled, joshed along with me, all the while calming me down, helping me get a perspective.

    When my surgery was over and chemo lay in the offing, I began writing pieces to leaven the heavy atmosphere, bring some humor and a light touch to the very serious issues we women with breast cancer face. It was very hard to find any humor those first weeks. As writing--and making myself laugh in the process--lifted me out of sadness and fear, I hoped that reading my stories and of my travails would do the same for others...

    To me, gerrib, humor is up-lifting, healing, therapeutic. "Laughter is the best medicine" may be accepted as a saying but I still don't think it's given the credit it deserves. A good laugh can loosen the stranglehold fear places on us. The body softens and drops its tensions when we roll in our seats laughing. The aches seem to glide away, the sorenesses ease. One thing I've learned: if you completely relax your body you can't feel fear. You can't feel anger.

    Writing or reading a good or a touching story can make me forget the sad or the scary moment I'm sitting right in the middle of.

    I love reading what other women have to share when the harsh clinical realities back off for a bit. There's a time for those realities and we all get a big dose of them and then we need support and answers and help. And that's here, at this site, among many others.

    But then that time passes and we go on--seeing life through the perspective of a cancer patient.

    One thing cancer has taught me is that the simple, day-to-day things are so precious. After the personally earth-shattering news, discussions, prognoses, path reports, and procedures, it's so refreshing to delight in those silly little things that I thought inconsequential, or took for granted, before--the simple beauties and realities of life...

    There's Life--walking, eating, talking, thinking, speaking, breathing--and that's what I was thinking of when I wrote that first post back in November.

    But then there's Living.

    I'm trying to concentrate on the living of it rather than the having of it.

    We all will go.

    My goal is to BE here.

    In the first place.

  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Well put Trill! My Mom-in-law has stage 4 lung cancer, they gave her Traceva but she refuses to take it. The side effects are horrendous! She asked me what I think she should do? I told her the first thing I'd do if it were me is to sit down in a quiet place and think what is most important to me at this time in my life? Quantity or Quality? After helping her do some research on Traceva I wouldn't take it either. She wouldn't even be able to leave her house! I told her that feeling at deaths door sick all the time and being a prisoner in my own home was not the way I'd leave this world. Both of our diagnosis has helped bring us closer, she calls to talk to me now instead of my DH! We pray for each other several times a day :-)

  • KQHill
    KQHill Member Posts: 50
    edited May 2016

    Way to go, Trill! It'll take a few days to a week for Google and Bing and the others to find you. No worries. You can ping them but I'd just wait.

  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    I love your website Trii, well done!

  • Janett2014
    Janett2014 Member Posts: 3,833
    edited May 2016

    I just want to say that I know someone who is taking Tarceva for lung cancer. It has not been easy by any means, and she has had many side effects (some awful and some not so awful.) They are mostly manageable though, and she leads an active life. Like all medications, patients have different reactions and severity of side effects. I just don't want anyone to dismiss it without researching and perhaps trying it. It is saving my friend's life, and she still has quality in her life despite some crappy side effects. And yes, she is able to leave her house.

    Edited for a typo.

  • gerrib
    gerrib Member Posts: 163
    edited May 2016

    Thanks for your thoughtful reply Trill. I just edited my post to make it more accurate. My estimated non -recurrence rate at 5 years is 85% without chemo and would have been 90% with chemo if I had chosen to have it. My tumour had a few unusual features, pleomorphic, low Er receptors and high Ki67, but for some reason the onc didn't seem too concerned. They seem to be more conservative about treatment here than in U.S. Anyway I've made my mind up - no chemo.

    I'm not a very good keyboarder so it seems to take me ages to reply to a post.

    I think I can move on but seem addicted to reading posts on BCO. I agree its a great place for info and support,

    I live in a rural area in Australia with my beautiful dog, Bear, and 2 alpacas. How is your cat,Pantaloons, today?

    Gerri

  • DisneyGirl16
    DisneyGirl16 Member Posts: 121
    edited May 2016

    Trill, well said! And the website looks great! I can't wait to see pictures of your blocks at the museum. How do you want to receive payment for tumbling block orders?

    Gerri, welcome to the thread! Sorry you had to find us, but feel free to discuss whatever you feel like in this thread. I don't think anyone minds. Sometimes we need to cry but other times we need to laugh. Trill's stories always bring a smile to my face and brighten my days. Hopefully, they can do the same for you.

  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Thank you Janett, I will let my mom-in-law know, her name is also Janet. Any helpful information is very valuable for her. She and her DH do a lot of traveling, do you think it might interfer with that? She was told not to use it unless she had an oncologist close by incase she gets sick? She lives in Peoria IL and her oncologist is at Mayo clinic which is quit a drive for her to travel I just wish her PCP would have orded the chest xrays 4 years ago when she requested it and I wish I were closer to have pushed her to get it done! She says she was toldat the time they don't do regular chest xrays at her age?!?!?! She is an active 73 years young! I think she should file a malpratic suit against her PCP!!

  • Janett2014
    Janett2014 Member Posts: 3,833
    edited May 2016

    WenchLori,

    I sent you a PM.

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi ladies--

    WenchLori--

    Wow, you have so much on your plate! I wish I could do something for you...I love your little photo there--your personality radiates even from that tiny image.. I feel I could reach out and hug you--so that's what I'm doing--RIGHT NOW!

    I think that's horrible that chest x-rays weren't done sooner!. Especially since she requested it. I'd pursue it with a lawyer--at least to get an idea of what's involved and how strong is her case...but it sounds so negligent on her doctor's part. That drug sounds quite powerful.....These are serious issues. I faced that also when I sat across from my oncologist and she gave me the run-down for triple negs and the plan for me if I wanted it. I just didn't like the side-effects...and the little gains....I decided in favor of quality of life-- I mean, when the end comes I want to be so sorry to leave life--not grateful it's happening because I feel so lousy!


    Thanks, all, for the wonderful support you've given me as I slug through the mysteries of website-building. I do think that something very challenging like this is therapeutic---I haven't thought about my missing boobs ONCE this week!

    I put up a new website because friends were asking about what the blocks look like in action--so I put on it a link to YouTube and a little 18-second video showing them doing their thing. I also included a link to the Evergreen Museum so you can see how lovely a place it is.

    If you're intrigued, just type in trishrawlings.com to get to the re-built site...

    I haven't left this bed all day and my phone--from all the calls to the website company--has about two minutes left to its battery! Pantaloon thinks that I've abandoned her--'cause I kinda have--and she keeps walking over the computer...

    DisneyGirl, I'm going to send you a PM to discuss your blocks, etc.

    Gerrib--Pantaloon is doing fine but is peeved that I'm not paying a whole lot of attention to her lately! I think you're being quite wise in your decision regarding treatment. And I agree--this website is addicting!

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    P.S. Ladies, I decided to re-do my website. I show the Serpentine Sidewalk, added a link to a little 18-second video showing the blocks in action, and a link to the Evergreen Museum.

  • DisneyGirl16
    DisneyGirl16 Member Posts: 121
    edited May 2016

    Trill, did you stay up all night??? I can barely keep my eyes open when I get home from work these days. The fatigue they warned me about due to my radiation treatments is finally starting. Gotta go check out the new updated website.

  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Thank you for the hug Trill, it was wonderful! It's been a hard time after Mom told me about her lung cancer. It really upset her when my Dh told her I was diagnosed with BC, she cried! She didn't want me to go thru what she was going thru but I think I got the "better deal" if there is such a thing?!?! I wish I were closer so we could do more things for each other.

    Thank you Janett, I got your PM, I appreciate all the information you have provided. I'm praying Mom at least tries it for awhile...

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi DisneyGirl--- I did..I worked on that remake of the site and a night owl friend wrote me that it wasn't coming through..so had to stay up...I can't sleep when something's broken or wrong or bugging me...

    I do so feel for you with the effects of the radiation treatment. Dear, do get lots of rest! When I was recovering from surgery someone told me to sleep whenever I felt drowsy--just to go ahead and nod off....it's so precious! It will help you recover and heal and keep strong.... I'll be thinking of you when I--finally!--do turn in...

    Lori--So glad you caught my hug!!! I wish we were closer also... you could do what a friend did the other day: sit down on the block sidewalk with me and play! It's such fun. Pantaloon and I do it all the time. I took up the sidewalk last week and I could tell she missed it....early this morning I put down some of them again...the room seemed empty without them.. There are so many that there's no way I can remember any individual one so they come as much a surprise to me as to others...

    I'll put both you and your mom in my prayers tonight...you sound like such a warm and thoughtful and empathetic daughter! She sounds just as loving as you and you "got that" from her I'll bet. Our moms are so important! Lucky you to have one another!

    t


  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi all--

    Hope you all are well!

    I just heard from my go-to 24/7 advocate that she had a little scare in January. Like me she's a triple negative.She had a lumpectomy 3 or 4 years ago and only one chemo session (it made her too ill to continue). But it turned out that the 'something' was just a calcification. So she's very relieved! It reminded me that yes, things can happen down the road, and not to forget that...but also to continue to live life to the fullest... I'm so glad she's OK...

    It's been a strange time. The website is finished and I like it. But when I called the Evergreen Museum the other day I learned that the sample Tumbling Block I'd left there had come un-taped at one spot. I think that an over-eager kid or person had been handling it and got too rough or something with it... I went up and got it to bring it home to fix it. It takes a good bit to break these apart with that Tenacious Tape. I almost feel like asking them to keep the sample behind the counter or under it or on it--at least in sight.... like they keep other handmade things...

    Then I noticed with the boxes I have here that the blocks inside tend to stick to the plastic. The boxes are so nicely snug--but it means the bottom has to be opened and the blocks pushed through like you remove cranberry sauce from a can.

    I can't believe I'm saying this but I think I have to make some boxes that are tad larger. I want them to be snug-fitting but not this snug.It's because the blocks have several layers of paint and this thickens them and gives almost an impasto effect in places.

    The problem is how to make my template 1/16th of an inch larger. The boxes are now 2- 9/16" square but they'd be much nicer if they were a tad roomier--- 2-5/8" square.

    Anybody know how to make a template larger? Maybe a quilter out there? Or somebody good with math or geometry?

    I'm stunned that I'm even thinking of doing this! Aye Aye Aye!

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    WenchLori-- How are you doing? How is your mom? Are you calming a bit about the up-comiing surgery? Getting prepared? I found I calmed the closer it got...

    Hugs for you and your mom from me and Pantaloon (whose hugs are really strange and sometimes turn into her squirming and getting out her claws, which kinda detracts from the cuddly moment....but I tell her she's an animal and not to feel guilty because that's not an abnormal reaction when an animal--even a loved pet--is hugged for too long and a bit too tightly....)

    t

  • WenchLori
    WenchLori Member Posts: 1,558
    edited May 2016

    Good morning everyone!

    Trill, thank you the hugs, right back atcha! I'm doing great most of the time, when I keep myself busy, other times I start thinking about things and then I'm not so great.

    Mom is doing well, thank you for asking. She had a rough day yesterday with the blahs so we spent most of the day catching up with our Criminal Minds tv show.

    I'm sorry to hear about your having to make your template for your blocks bigger. I remember what a task that was for you and how relieved you were when you finished them.

    (((((Trill & Pantaloon))))

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    WenchLori-- I'm glad to hear the "spring" in your writing--meaning you're coping--and that you and your mom dive into TV like I do....it's a great de-stresser!

    The boxes will get built, by hook or by crook....I'm not too bummed as I have to admit that the challenge was fun and kept my mind100% engaged...

    Have a great day...t

  • DisneyGirl16
    DisneyGirl16 Member Posts: 121
    edited May 2016

    Trill, sorry to hear that you have to re-make your boxes. Have you figured out a new template yet? I don't think I'd be much help with trying to figure that out. Lol.

    Hope everyone else is doing well. Weather here is FINALLY getting nice so I am trying to get out and enjoy it before the hot, humid weather takes over.

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited May 2016

    Hi DisneyGirl16-- No, haven't worked out the template problem yet. I'm waiting for the plastic box sample that has some elements that could help me I think....I'd cross my fingers but I need them ALL to do this thing...

    Yes, get out and enjoy the nice weather! Can't believe May will be over so soon, and April seemed to last forever...

    t

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited June 2016

    Hi dear ladies--

    It's been a while since I wrote here--this is just a note to say I'm still alive and kicking! I've been struggling with a bad sinus problem--congestion, endless post-nasal drip, wretched cough, no sense of smell or taste--and, to top it off, having to wear a maxi-pad 24/7 due to stress incontinence! Aye-aye! I feel like a 15-year-old again with this bulky thing between my legs...

    But I finally hied myself off to Hopkins and a new doc and he's put me on cortisone and this cortisone liquid to put in my nasal rinse bottle twice a day. Thing is, it costs $80 per month (!!) and my insurance just denied covering it because it's an atypical use of budesonide--normally the stuff goes into a nebulizer for asthmatics. But I feel so much better after a week of this that I may have to spring for it...maybe I won't have to be on it continuously....I'm hoping a month of it will knock this thing for a loop.

    Remember those posts I wrote--for the fun of it--about mucus blobs and how they have haunted me and hunted me down? Well, those were a sign of sinus disease! So the joke's on me!

    My website for the blocks has undergone lots of changes. I decided to remove its store atmosphere as paypal may construe sales require a fee to them for taking payment and the site company itself wants me to upgrade to a $15 per month plan in order to have it a one-click store.... right now anyone who might be interested can contact me via the info there should they want to purchase something. I messed around one blah, cough-filled day and removed/changed a lot so you might not recognize it if you visit.

    My brother and his gal friend were here a couple of weeks ago and we went up to Evergreen and had the tour and the folks there are antsy to have my serpentine sidewalk on display... Me, too!

    I hope you all are doing well! Pantaloon is enjoying mommy not hacking her head off day and night and mommy herself is happy to oblige.

    love to you all!

    trill and Miss P

  • Molly50
    Molly50 Member Posts: 3,773
    edited June 2016

    Trill, I am sorry you have been so sick. My son uses Budesonide via nebulizer. Great stuff!

  • WenchLori
    WenchLori Member Posts: 1,558
    edited June 2016

    ((((Trill)))) so sorry you've been under the weather! I hope you feel better real soon!

  • gracie22
    gracie22 Member Posts: 229
    edited June 2016

    Trill, currently have a sinus/cold/allergy(?) thing, so I relate. But beyond that, wanted to say that I have been reading your stuff since your first riveting post (I am a fellow traveler BC Quality of Lifer) and have so enjoyed your writing and art. And also live in your area--I am in the DC burbs of Maryland and think we had the same surgeon. Carry on!

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