CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
Comments
-
Tresjoli, I went back and checked my info on my treatment. I knew my EF had dropped, but I couldn't remember what it was. I had to postpone my last chemo treatment because my EF had dropped to 51. I ended up doing the last one three weeks later. It was less than a week later that it was back up to 63.
DH and I decided to fast tonight. Neither one of us are hungry.
Edited to add: My original EF was 60.
0 -
I am officially giving my second, or is it a third, to the nominations of SDB as Mayor and QMC as Vice-Mayor!
0 -
Party at the mansion!!!
0 -
Italy,
I was radiated as an infant too which is why both times I chose an MX I'm so done with radiation. It's already caused enough shit in my life.
Sorry to be so behind , I didn't get back home till 6:30!and now am exhausted...
Gaia,
Really interested in the laser surgery. Never heard of it. I've had two Mxs 25 yrs apart. The first one there was a lot of pain, horrendous pain for 1 day which I found out later was due to removal of so many lymph nodes, the second one...only a couple of sentinel nodes and no pain at all, fortunately I never had any lymphadema issues.
Tomboy,
You do amazing work!!! I had no idea you were such an artist...definitely art director of Crazy Town. Jack, you are so right! Well put, and your shrink sounds like a real gem. I was given the Tibetan Book of the Dead back 25 years ago which I read and read and read. I love that book.
Rainn,
That sounds like a great outing, Vermont, maple products, the whole shooting match. Wish Incould meet you guys in Brooklyn for pastries, the project we're writing right now is set in Brooklyn so who knows I might get back there one of these days. My sister in law and her husband are in NYC on the upper East side and they're always inviting us . She goes to SK so she's a member of the club though I think she's too cool to go to crazy town...even though she's my favorite in law I wish she'd join us.
Slow,
Thanks for all the good wishes, I was expecting the worst today... Because I always expect the worst, but hey that's why I'm in Crazy Town right? You have my vote for Mayor of Crazy Town any time
Tresjoili,
Welcome to Crazy Town you're in the right place.
I know I'm forgetting a whole bunch of you but I send you all the best. I have promised to bake Devil Dogs for a couple of Brooklyn boys tomorrow, I've got a recipe but I've never eaten or seen one so we shall see... Til tomorrow
0 -
The fair was great. Had a good time, we didn't eat very much, but did a lot of walking. Hubby played a water gun game and won me a Minion. Got a few things from a Watkins products representative that was selling there. The whole thing that made my day was I found a woman who was selling personalized bears and she had one with my name, had to buy it.
0 -
Good Morning Crazies and happy Super Moon! I guess my brain was super charged during sleep and I will share a snippet of a dream- are there any resident Jungian analysts in CT? I am an epic dreamer by nature- but this snippet was, um, interesting. So for your amusement:
( This occurs in the middle of a dream sequence where I have returned from a food shopping trip, with my mother and ex husband. We arrive at one of my great-aunts family home to help make a party. There is chaos and food prep happening in the kitchen. I don't want to be part of the food prep because it's too chaotic and messy for me, so I go find a 'play room', to avoid being asked to help)
The 'play room is filled with 'puppet-mobiles' strung up in the corners of the room. i immediately 'climb the walls' and start flying from corner to corner and begin 'pulling their strings'. This in turn activates them to fly across the room, bumping into fellow puppets, to activate them. and so on and so forth. I spend quite some time interacting with these puppets, flying around and becoming a bit breathless. At a certain point I realize that I am not limited to 'pulling their strings' and that I too can fly from corner to corner bumping into them, and that doing this actually hyper activates them and causes them to multiply and swarm. After some time I find myself in the middle of the room; twirling, like a Sufi, and creating a huge funnel swarm of these puppets that have by now all morphed into 'pac man' like orbs. as I am twirling I realize I am also SCREAMING; not because I am afraid, I'm just letting something out. Finally I begin to slow down and the swarm falls to the ground. I 'land' and realize that I have a mouthful of these orbs and some are even lodged in the shallow part of my throat. I clear them all and as I do so, I have the thought: ' this is a terrible game for children; I hope it comes with a warning' THE END ( well of that part)
Now
Katy- glad your appointments went well. Your therapist sounds very tuned in. 'Practicing' in the graveyard is also a very ancient 'Shaivite' practice- devotees of Shiva.
Slow- yes a solid place to share our stories so we can all learn or simply gather information from each others experience. I am thankful for it and YOU!
Tresjoli I am starting that path 9/14 and have my baseline MUGA this week- I am in crazy town over the 'future worry' that I won't even pass that!
M0mmy- the fair sounds fun
Sula it would be great if the project brought you to NYC and BK! How did the devil dogs turn out?
And to everyone I have missed ( because my mind is a bit of a sieve these days and I can't scroll back), have a great Saturday.
More CT to come I am sure
0 -
Hello all -
I'm finally back from my two day "med-cation" in Pittsburgh. Had mammo, ultrasound, MRI and appts with BS and PS. Tumor has shrunk, but there is still cancer in the breast, but not in the nodes. I'll have radiation, and the full ALND no matter what, but I now have the choice of lumpectomy or mastectomy. This is a huge curve ball - I've been planning for mastectomy all along and now I'm not sure what to do.
Lucy and Sula, great news on your tests! I'm off to catch up....
Barb
0 -
I am honored to accept the nomination for Vicemayor. Now to come up with a campaign platform....
Tresjolie: welcome to this group as well.
Pennsygirl: oh [bleep], the lumpectomy or mastectomy choice! Good news, unequivocally, that your tumor's shrunk sufficiently that you now have that choice, but now you need to make it! There's no right answer, only what we can live with.
0 -
ok Gaia- not Jungian here but your dream suggested something to me.
Going "food shopping" and the related prep sounded like going to get your cancer diagnosis, which you tried to bring back to your regular life (the party) but it wasn't working for you. You needed to escape, you needed to process. Often processing through play can be powerful.
I think the room you found was Crazytown, and all if us and the information bits (friendship, medical experiences, etc) are the puppet mobiles. As you started to share (play) with us, we became alive, involved with you, to the point of being almost a part of your physical being. There was a frenzy of new people and terminology you became acquainted with, which surely twirled your head around a bit, due to the intensity, until the initially energy was expended, and you and the orbs reached a stasis. The puppets did not hurt you, but ultimately are NOT you.
You, at the end of the dream, are more peaceful.
I agree, not for children. But there is a child in all of us, and I don't think it at all unusual that you sought to escape, and have processed some of the more terrifying parts of your reality through play and humor. Your child has been frightened beyond words. The screaming was the expression of that fear, which if course, doesn't go away with a simple play session. But does offer temporary relief, possibly extending to long term tools for dealing with that child and such fear.
On another note, my shrink is Jewish (naturally) and he has shared a number of other life lessons and practices from that culture, (such as the concept ofmitzvah) which has enriched me. (I, born Catholic and still mad) it's odd to me that he didn't mention the tie-in between Bhuddist meditation and Shiva. I will have to ask him.
Pennsygal - welcome home and I'm glad you got through that marathon in one piece. Sorry about the curveball. Sometimes having more options us harder.
Wishing all my crazies a great weekend.
0 -
Thank you Katy. I find that interpretation intriguing; I think I went directly to the more simplistic ( because it's in my face) interpretation that the pac men/orbs were cancer cells and somehow the 'dance'/play was my system (body and psyche systems) trying to make sense of them and my relationship to them. and then somehow me in the center is a moment of it's 'not me and them' it's a whole new system. At least that's how it landed on me as I woke up. So in the end yes your interpretation of the 'play' as being a way to 'work through' and integrate/digest all of this new information totally makes sense. Although you emphasize it is not me and guess that's the 'falling away' part.
I officially vote you the CT 'interpreter of dreams'. It's a magical /shaman -like position and from what I sense of your temperament, one you are well suited for. Every village needs one!
That gives us
Slow: Mayor
QMC: Vice - mayor
Tomboy: artist in residence
Sula: food editor
Rain: 'dear Abby'
other than that a quote I came across
"Life for its own sake is hollow. People who live in a society, enjoy looking into each others eyes, who share their troubles, who focus their efforts on what is important to them and find this joyful – these people lead a full life." - Albert Einstein, in a letter to his son, Dec. 23, 1927
0 -
Um. I will not touch that dream.
0 -
Whatever. Haha.
0 -
Gaia; Definitely we need a dream interpreter--I've had a few classic anxiety dreams, but nothing as involved as that. Did it feel like a good dream or a nightmare?
0 -
Tomboy.... I am a notorious 'fellini-esque' dreamer
Katy are you declining my nomination?
QMC- it felt like I was /am unraveling something - there was a how follow up segment that was directly related to having tests with a very small say 4'10" radiologist type- giving me 'bad news' and me chasing after her and saying 'I understand, but please don't speak to me that way.... and it went on- yes so digesting
ok off to the market for supplies
Hope all you Crazies are enjoying the day!
0 -
Tomboy made me laugh at myself, which is good!
not declining necessarily. I feel unworthy though. It sounds like a job for a much wiser Crazy. I am terribly flattered. I'm sure shamans and the like do not have such emotion as pride or flattery when their spiritual state is commented uon.
I'm the type who will undoubtedly get cancer of the "qi" and would not live out my term.
0 -
Ah Jackbirdie, it is a characteristic of wiseness to not think you are as wise as you really are...keep in mind that if you thought you knew it all you'd just be a wiseass! :-)
I second the nomination of Katy.
Octogirl
0 -
And I will just fly by and play the village idiot.
Hi crazies. It is Sunday morning here and Dh has brought me a cup of tea which I must drink before it gets cold.
Will be careful not to light too many candles this morning but then I love candle light.
0 -
thank you Octo. Ok. Sniff. I'll tr
0 -
on point octogirl
Cancer of the qi
In essence, if you will, that is kind of what C is. A glitch in the flow.
But no matter your Shen, heart-mind , is fully in tact Katy.
0 -
Three Cheers for Shaman Katy!
And now, my sister crazies, I could use your sage advice or at least a bit of support. I am having a tough crazy town type of time: I am still getting phantom pains and creepy crawlies in my arms and legs, and that is BEFORE chemo. And, starting reading the SEs on neuprogen, which MO wants me to take and yikes! For some of them, I am supposed to call the doc if I feel any tingling in arms or legs or tiredness. WTF? I am already feeling that and haven't started yet!
Meanwhile, my general anxiety level is increasing, and work is exploding. I've already had one instance where I started crying in response to an unreasonable demand by a colleague. You can imagine how much I HATED that...I haven't been taking, nor have I felt the need for, anti-anxiety drugs, but I am re-thinking that decision. the thing is, most such drugs tend to knock me for a loop, and my job is challenging enough already.
My plan all along has been to work through chemo, just taking days off if/when needed here and then. Except for two big work trips planned during chemo, one to east coast (!). MO has given his blessing to the plan, as it is his believe that keeping active reduces SEs. He is also a big proponent of exercise so as many of you know I've been upping my game on walking and trying to get in shape before chemo starts.
Meanwhile, chemo start has been delayed another week thanks to one stitch in one of my incisions that has been stubborn to heal. I am happy to have labor day weekend chemo free but the delay increases my anxiety...
So, here is my dilemma related to all this craziness: I have plenty of sick leave. PLENTY. My boss is supportive and feels I should set my own pace. And I still haven't told a lot of people at work, very few in fact, so assuming I lose my hair, well, there are going to be some pretty surprised colleagues...and no, I've decided I don't want to cold cap. Logistics of it given where I live and where chemo will be wouldn't be easy and to be honest, I just don't think I want to make the commitment involved.
But I can just stay home from work for a few months. With no loss in pay. (I have almost three months of sick leave even with what I took for Lx surgery and recovery. Same employer even if not same job for many years, and they don't pay that well but benefits are great). Hell, I could even retire if I wanted to...
Part of me wants to just curl up on the couch. But part of me knows that when I do that, I start crying. Crying now. Over nothing, or so it seems to me (yeah, I know it is not nothing but in the scheme of things...)
I don't know what to do. Did anyone of you really manage to work full time when/if you went through chemo? And how demanding was your job (honestly...some of our jobs are easier than others..mine is completely intellectual, not physical, for whatever difference that makes). For that matter, if you did work, why did you work? Was it financial need, because you loved the job (as for me, I tend to have a love/hate relationship with my job), or both or something else?
Sorry for the crazy rambling but I figured Crazy Town was a good place for it.
Octogirl
0 -
Octogirl, well you seem to be in a position to chose if to work or not. I did my shit before the aCA act and I needed to keep working in order to keep my health insurance. Small firm, I was an outside commission sales rep so it was tough but I did manage to work the entire time although no chemo. I told clients that I might not be in to office and to always e mail anything as not able to pick up calls and if they sent me packages to be sure to send me an e mail to watch for shit.
Business stayed pretty good but I really just lost interest in it and after it was over I started working my plan to retire. Did that in 2013. The entire working community seems dif to me and really not interested in that life anymore.
Hope you work out your plan
0 -
Hi crazeeees. I love dreaming so much, that- you know that moment before sleep and waking? I loove that feeling. So much so, that I am very very good at hovering there for a very long time. It's probably not good for the part of me that needs the deep REM sleep, you know, the kind that is good for you. But the part of me that loves dreaming, (and drugs) and books and movies? That part of me loves it!!!
Katy, yes you are a brilliantly sage shaman. True. I just had a different intuition of it, that's all. Timing is everything. I didn't mean for you to laugh at yourself! But if you are having a good time, then more power to you!
I had voluntarily quit my job at the museum where I had worked for three years, to concentrate on my own art. Before I really got into it, my friend who had lung cancer, well it had metastasized to her bones and worse, her brain. So I spent the next eight months taking care of her until she passed. She was my six foot doll! I bathed and dressed and fed her, anything she wanted, took her wherever she wanted to go. One of the hardest and best things I ever spent time doing. I miss her very much still. So she did leave me a little something, and I set my sights to do my very first solo exhibit, and was working on that, it was about mortality,something I have always been interested in,in honor of her memory, and all was going forward nicely. Until I found my bump. and then I just couldn't muster my center for a long time after that. During treatments and all. I was on unemployment though, and luckily got into a program of cancer detection for low income women. So it was a good thing! I still thank my lucky stars about that! So, I was writing all through that time, but just not making my art. I have only recently begun again to do that. I am STILL not working! I am not convinced that I will last long, so for once in my life, I really just want to finish all the art and writing I have started. That's it. I want to get it done! also, when I am working, everything melts away, and I feel so great, it's awesome. I am hoping to sell some of my things I make, like pendant talismans with personal symbolism for each individual that wants one,sterling silver bookmarks with a dangly special bead or found object, rings, earrings, simple things. Then I will decide if I want to start carving in wax again, and get a kiln and everything for that. I will try and open my etsy store soon, so I must make more things! I really live very simply, and must find other ways to manifest money into my life.
Even tho I didn't work during chemo, I couldn't for the life of me figure out how women with jobs and or children did it! And I was in really good shape, because the museum work was extremely physical, as were all the other work I had done. (house remodeling, painting, etc, all that goes into a house.) So I am amazed by all the women who could!
0 -
Morning Crazies,
Gaia.....that is one helluva dream sequence!!!! I have been known to have some pretty strange dreams, but that's a real topper. During chemo the first time, I kept a dream book by the bed and would write stuff down in the morning, first thing. I had one which involved a movie we were doing a fox, and in my dream not only were we writing the script, but I was informed I was also doing craft services and was supposed to fix lunch for hundreds of people. I stopped writing dreams down after that. The fact that you were flying in your dream is great, from what I've heard/read flying dreams are very very good. I'm not making the devil dogs today as we got a dinner invite tonight and so I'm making a chocolate/chocolate mocha gluten free tart to bring for dessert...this is not a devil dog crowd. Believe me if I get back to NYC, I'll hit you Big City sisters up. Perhaps I'll even be able to drag along my very blase upper east side sis in law, who just finished her 5 yrs on Tamox.
Queen, for Vice Mayor!! I third this one..or did I do that already????
Octo,
we worked all during my first chemo 25 yrs ago. As writers we have always worked from home and only have to go to the studio for meetings etc. So I worked from bed, I would fall asleep in the middle of work sometimes but since we were home that was ok. I had to keep my diagnoses secret back then as cancer was decidedly uncool back in 1990. This last time we didin't work during chemo as the taxol was a lot rougher on me than the CMF mainly due to big time "digestive" issues aka, diarrhea which had me spending so much time in the can it was ridiculous to even attempt to sit in the office and accomplish anything. Also I was feeling exhausted by the end so I spent the last couple of weeks napping and resting. A month after finishing chemo we were back to work again and my energy is totally back. I usually go to bed at 1:00 am and get up at 7:30....mentioned that to my MO yesterday during a checkup and he was shocked..."do you always do that???" So I would say be fluid with the chemo , and see how it affects you. My friend who has been stage 4 for nearly 10 years now, has worked steadily even when she was doing taxotere and a bunch of other stuff , still went into the office every day, except chemo days. Everybody reacts differently and it's great if you can take time off with no ill effects from the powers that be, you might want to take advantage of that. I didn't find I had chemo brain either time I had chemo but the last time I just had a sore ass most of the time/
Jack,
I think you should definitely write the psychology column...you can explain why Crazy Town is so crazy.
Tom,
I feel the same way about that dream, though I do think it would make a wonderful dream sequence, especially with what they can do with CGI now
Alyson,
you guys down under there should be getting ready for Spring soon right???? I can't wait for Fall here, except I don't like Pinktober
Pennys,
Yay for the shrinking tumor!!!!
Mommy,
we went to the Sonoma County fair a few weeks ago and we saw some of the animals (steers, pigs. sheep)being judged, that we see around town. Here's Patsy greeting one of out neighbor kids and her sheep. I couldn't find anything at our fair that appealed to me without causing guilt over eating fried objects on a stick.
Slow,
your EVF was almost the same as mine..baseline was 60..then after 4 months dropped to 59, now back up to 63!
I know I said I wasn't going to paste anymore Possum pictures so here's a picture of me, taking the day off from writing.
0 -
Just a quick note
Katy I think you are officially our plant healing/wise woman shaman
Octo- I was starting to craft a lengthy note to you ( which I may finish later) but I think Sula summed it up: everyone IS different and if you have the flexibility, meet it where it is WHEN you experience it. I am right there with you sister, although not starting chemo, I am starting hormonal and targeted therapy, right as my 'busy ' season starts. I will continue to work because I do need the income, but at least I set my pace because I work for myself ( double edged sword there). Ok one more thing- if nothing else this crazy ride calls us to re-evaluate- so if you have room to do that, especially if you have a love/hate thing with work, I vote that you take that opportunity- but not to sit on the couch ( unless of course you simply need a break/rest/recoup)- plan to explore something that you LOVE but maybe haven't fully explored because of how life has been set up so far with work etc....maybe that's the meditation!
Sula- I can float you lots of 'dream sequences' LOL, as I am a regular dream journal keeper- it's the only way I can 'discharge' the images. I actually have had flying dreams my whole LIFE!
OK Saturday night fever hugs to everyone - the good kind of fever.
0 -
Tomboy- what an incredibly beautiful thing you did for your friend. It must have been so hard for your own "situation" to fall right on the heels of that.
I love the way you write about how you feel when you are working. It sounds like freedom. And not the Janis Joplin kind. I would love to be one of your customers when you are ready. A bookmark. Yes.
Octo- I didn't work during chemo. I couldn't have. But nobody knows until you get there how well you will tolerate it. It sounds like you have some flexibility so hopefully you can play it by ear?
I will say that in my case, and most cases of my counterparts in the March 2015 chemo group the SEs were cumulative. It got way worse at the end. I will also say that Italychick, who visits CTown now and again, exercised heavily all throughout, doing hundreds of miles on her bike every week. She felt the least SEs of anyone, and generally did the best of all of us. There is a huge connection between exercise and minimization of SEs. Hydration, small meals, and staying WAY ahead of the nausea, are also important.
We will get you through it. But I don't see how you can make a decision until you start. Unless you just made the decision now to focus on yourself during this time and just decide not to work.
Just my $.02.
0 -
Very well said Sula and Christine.
I forgot to mention Jack (my dog who is a Furry Friends therapy dog) got invited to participate at a circus day at a memory care facility.
Talk about getting out of my head. Any wonder I don't feel what is almost 24/7 pain when I do this with him? He handed out live and kisses liberally, and got a lot of ear rubs in return. A satisfactory quid pro quo. Here he is after his "performance" :
PS- Jack is the real shaman. I just drive him around to his appointments and try to live like he does. It's a work in process
0 -
Katy, love your shaman dog, he looks special to you and others you meet
dang stupid stomach issues, doc says it is acid reflux and take one of the OTC, course she neglected to mention most are NSAIDS so the dumb pill I took last night, worked but I got all stuffie from my allergy
so plan B tonight for a dif med, just had nuked sweat tater and hoping it is a calm tummy tonight
dang it all, you would think I would have thought to research the med first
0 -
Jackbirdie,
Jack is adorable!! My husbands younger bro brings his dog into to his law firm every day..the dog isn't for him, but it's a therapy dog like Jack and he takes it around to hospitals etc. He also takes that dog to Vegas and all over the place,last time I saw the dog she was sitting on a barstool! Of course there's lots of this:
so maybe he gets some "therapy" out of it too!
0 -
yes I think the therapy gets spread around pretty liberally. Jack is the Jack in Jackbirdie. My life pretty much revolves around him. He was my therapy long before we were able to make it official.
0 -
Here here to being fluid if continuing to work thru chemo "blessed be the flexible, may they never get bent out of shape."
My job is *mental* rather than physical as a hospital pharmacist. The math co-processor is gone, as is the desire to learn new things and retain them, there have been a few synaptic glitches so now I look up most things to double check, lists are a must. I must add that the added stress of Mom's nursing home placement, decline and death also compounded the chemo brain. Physically a flight of stairs leaves me winded as does the 500 steps down the hall from the car. With no sick time (3 hrs) and only 5 vacation days, this will see me through last chemo (Sept 2nd) and will schedule Herceptin every 3 weeks on day off or earlier in the day. Having to hire out lawn care and maintenance. New perspective on work and heartily agree on not becoming a couch potato and doing what you enjoy and can find the energy to do. Keeping my mind busy keeps me out of crazy town business district and looping around on the by-pass.
0
