CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Ducky, Brinker (Susan G. Komen sister) stepped down as CEO because everyone was making a fuss about how much she was making. They hired a new CEO. I'm glad your daughter stopped walking. I know Komen's donations are down the past few years. I think people are finally starting to see what they are all about. In the press, they keep talking about all the money they've given to research over the years, but in comparison to what they bring in every year, it's a very small drop in the bucket. I will give my money to BCO or METAvivor.
Queen, Take is slow. We don't want to see you back in the prison/hospital again!!
Lucy, That same invite holds for you as well. As long as I have an open bedroom, I'd be thrilled to have you as a guest!! I wish you lived closer. I think I'm going to install a world clock on my computer. I'm always so confused what time it is where you are. This way I'll always know!!
Rain, I guess I'm not really sorry for the rant. When I saw the actual numbers, I was just in shock. I hate the pink washing, so I really did put all my bad energy into the companies taking advantage of the pink marketing. I tried to console myself with the fact that at least SGK was helping women get services and mammograms. I thought making too much of a fuss, would ruin it for the women that needed the help. But my goodness, after seeing the numbers, I realized just what a money making machine it is - so shocking when you see it in black and white.
PTS, When I have a conflict in meds, I always call the pharmacist. They know so much more than the doctors.
Ducky, Sula, Have a great time tonight and be safe driving. I'm sure you'll have plenty of good stories to tell tomorrow. Hope you're able to get some rest.
Tomboy, How did pain management go?
Thought this was appropriate for Crazy Town.
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Slow, thanks for reminding me to reach out to my pharm, I know that bur forgot! that should be on tomorrows list of stuff. I do have a good relationship as I am such a good customer~~
also just spent some time researching some spine docs and sort of think I should call for a second opinion, found a place that sounds good so that too is on the list for tomorrow. First question for them is do they take Medicare as it seems some of them do not take it
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Double cafe mocha vodka valium latte for me, please. But I promise to take it slow.
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Funny, I was stuck on just the words, "valium latte." The rest didn't even signify.
Milestone today, crazies: 3 weeks post surgery, and I have not had a single tylenol. I did take an aspirin a little while ago, but that was more because of reading the studies about aspirin lowering risk of recurrence than for pain. I think I've turned a corner: unloaded the dishwasher, put the tea back in the cabinet where I have to reach up high for it. Meeting on Friday with the MO to talk about the next phase of treatment. I haven't seen her since July!
DH is working; DS is taking the PSAT tomorrow and is a trifle unhinged. Consequently, it seems rather restful at the moment in Crazytown. I'm just going to stretch out here with my book. Don't mind me. (And yes, I fed him a good meal and some chocolate. I AM a good mother.)
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I relaxed on the ride... Not eating anything as I want to be. Careful post herceptin so there aren't "accidents"...
Here's where I am now.
And here's the cake for later... Solid chocolate and gluten free
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I don't know which is more beautiful, the room or the cake! Though it's oddly comforting that whomever baked that beauty has exactly the same cake carrier that I do.
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Sula, is that the back room behind the bar at the Palace Hotel? Wherever, I know I've been there for something. But nothing as good as Pepin's birthday party! Have so much fun!!!!
Octogirl
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Hello my sister crazies..
Ok, so I wish I had time tonight to reply to all of you individually...but I don't, because I need to rant myself. Well, actually, not a rant. Just need to check in and get some support from other crazies.... I had two moments today when I thought "Am I really that crazy?" and I wanted to tell you about it because well, you know....CT.
First Story:
As I think I've mentioned, my lx and nipple removal have taken a long time to heal...because I popped a stitch mostly. For a long time I was seeing the bs every week, which was a major endeavor because her office is 60 miles from my little town...she was watching particularly closely to be sure it was healed enough for chemo, and consulting with the MO...
Anyway, went to bs today after a two week break since last visit: and (as I knew would happen, I could see/feel it for myself) she pronounced it healed. Yay!!! Happy dance!!!
but then I asked, 'so when do I see you again?' answer: 'I hope, for your sake, never.' Basically, from now on, all the tests and follow ups and things that take me into CT: MO will oversee those. So, here is the thing. I LOVE my bs! I LOVE her staff. I felt so ALONE! I am going to miss them!! I almost started crying!
Why in the world would being healed make me cry??? Am I CRAZY?
Second Story:
Because bs is sixty miles away, and MO is right across the street from her, I had scheduled back to back apts with both. MO was just a check up and tests of WBC, etc (all good there....they are happy with how I am doing in chemo)...but anyway, hubby decided to go with me, to help with driving and just because, well you know, he's a keeper and all....
but we both were running late and had to hurry to get out of the house. Now, hubby and I have a lovely double shower, and so normally the fact that we have to get ready at the same time isn't an issue (thanks to double sinks and that double shower..) BUT, I realized that I just haven't been able to let him see me with no hair! the lack of nipple: no issue. He's seen it many times, he's bandaged it and all. And he gives me my shots. As far as I am concerned, he can do anything. EXCEPT see my bald head!!! I can't stand the thought of him having that image I see in the mirror in his head. At night, I wear a sleep cap (and often nothing else) to bed. even in my most relaxed moments, I am wearing my Giants cap. He has never seen me bald but that is who I am. Am I CRAZY?
So I futzed around and waited for him to be done in the shower (and after taking mine immediately put a towel turban on my head!) and we were almost late. and it got me thinking about my hair being gone.... I don't want to ever wear a wig (just not my thing), so why do I need to keep covered from him? And then I realized, I HATE being at work, because I hate people I work with to wonder what is under the hats and scarves and such that i wear. When I am at work I hide in my office. But, on the other hand, after all the apts today hubby took me to lunch at a popular, crowded restaurant. THAT didn't bother me at all, it was totally fun! (because after all, it is sixty miles from home so who would know me there?). In other words, I don't give a damn what strangers think, but those close to me or those I see every day: that matters. Ok, well maybe that isn't so crazy after all....
Sorry for taking all the space, but I just needed to share with those who understand....this stuff sucks!!!!
xoxox
Octogirl
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The short answer: no, you're not crazy! It's a different stop on the Crazytown Express for all of us (personally, I never want to see the inside of the hospital ever again!) But I loved my BS too--very professional surgeon's deadpan, but so obviously a caring man underneath.
And odd what each individual finds upsetting about the process, but if you're more bothered by the idea of your co-workers seeing you hairless than a bunch of strangers, then I can definitely see not wanting your husband to see you that way.
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Hi! I read this thread a lot, but rarely post, however, Octogirl, Imso understand about your bald head. I felt the same with everyone. I had different family members and frieds come whenI he chemo and did not want anyone to see me without my cap on. I must say that I have loosened up since my hair has started coming in. My sister was here and my head was hot and I just took off the cap. Once I did that, I felt freed. I still wIll not go out without my wig. You are not crazy! But, I bet your husband would not be shocked or think much about it if you took off your cap once in a while. He loves you for who you are.
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Make mine a double with caramel 0 -
Octo... Nope not crazy. The tears are because it was reassuring to have someone on your side worrying about the details. A safety net while flying on the trapeze, now the net is gone along with the bond. You have to strengthen your grasp. We are here for you.
The hair thing, I feel the same way. People can't unseen once we have been viewed in our folliculary challenged state but if we aren't going to see them again it doesn't seem to matter. Keeping the covers on I feel keeps it from being so "real" to others, and for me eliminates questions and the 'pity' stares... maybe. Also keeps them from worrying IDK
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I am all in for a get together. East coast west coast north or south, if I don't have to work I will be there.
Sula hope you have a great time. The room looks very opulent. The cake very decadent.
Must head to bed, H in the morning.
Tooth cancer is back, but I see the dentist on Thursday.
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Sula, I hope you enjoy yourself tonight! Everything looks beautiful.
Octo, Not crazy. How we feel matters. I was so worried about my kids seeing my bald head. I thought it would cause them stress because once I lost my hair, I really looked sick. It didn't even phase them.
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I will catch up in the morning, but in the meantime....
What do you think??? Baby step in the right direction, or CRUMBS???
I vote for CRUMBS. Looks like the negative press and criticism is starting to get to them.
There are people that are actually thanking them for this small gesture. Why is that so irritating to me???
I think ALL donations should go where the donors decide - ALL year long.
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Morning Crazies
I'm nestled up in Bedford prepping food for a small group. Wanted to say Good Morning to all before I start for the day.
Rain- great about no tylenol and sounds like your energy/'to do' abilities are returning. I'll reach out early next week to when we can make some time to connect
Sula- hope you had a wonderful time and were able to 'manage' the food so that there were no digestive issues! The cake looked beautiful. The venue too.
Slow I will check out the link you posted a bit later; can't get pulled down that rabbit hole before work- the negative juju might mess up my food energy. Loved the latte with valium and vodka- slept like a baby LOL
Tomboy- how did it go with the pain management appointment? Thinking of you.
Octo- Seems the emotions around the BS would be related to cutting a cord and also maybe both a sense of relief and fear- sounds like your BS really had your back and letting loose of that support could feel unmooring. Re the hair/lack of and letting your DH 'in'- hair protects us and there is no masking the vulnerability we all feel on the inside once an outer layer is shed. It is a very intimate thing. We don't have that intimacy with strangers. But really getting that 'bare' with people we love.... well that's even causing my stomach to rumble. Be gentle with yourself. Maybe at some point you would consider saying how you feel ( maybe you have) and take it from there....
Katy- how are you?
Ducky so great that your daughter STOPPED walking in the charade
Rose- I know it was a few pages ago, but I am sorry for your succession of losses. How are you feeling today?
QMC- I am all for 'getting back to it' but it scared me when you said you went to the Y.... please no more infections! Even though we will take care of you we don't want anyone to have to go back to the big H!
Good morning proud and Mommy and shorfi and poppy.
i going to enjoy some morning air before I start prep.
More later Crazies
hugs!
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SDB: yuck. Double yuck. I say crumbs too, if that. A highly cynical way to try and get folks to be quiet (the comments are very interesting, btw. If the money were well administered and really went where they said they did, a choice wouldn't be necesarry.....Maybe they are feeling the pressure).And the illustration still does not match the reality of who gets the disease, although I suppose given the rest of the ad that is a relatively minor point. Maybe.
Gaia, glad you didn't read that before your gig. It would take away the love.
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QMC, I am with SDB, or whoever it was who expressed worry about the Y. Just FYI, I did ask my MO yesterday about going back to swimming at the gym. I am an octo, I have to be in water. Got a big fat NO until chemo is over (germs and risk of infection), unless i can find a friend with a seldom used and very clean private pool....pools aren't that uncommon around here, but I guess I don't have the right friends, as that isn't an option. Doc says I'd be better off in the ocean, and as cold as the Pacific is, I may just have to put on my drysuit and go do that one of these days....
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and finally, before i head off to work, thank you so much for the thoughts on my craziness of the week. Yes, Rose, the trapeze analogy really hit home. Going to keep a hard grasp on that bar for a while....and yes, I did tell hubby, in the car on the way home last night, how I feel. He started to give the stock "you are always beautiful to me" answer, but then said, "no, you know, if it makes you feel bad, we can deal with it and you can keep covered. It is ok to feel that way. You are vulnerable right now." So I think he gets it...but it is also true that I can see that he is very worried about me, and as someone mentioned, that is part of my concern. He hasn't been exercising as much or sleeping or eating as well since I've been diagnosed, and I HATE that. Sigh. Something else to work on.
I did reach out last night via email to one of my coworkers who is also a friend I really trust and who has been probably the most supportive person at work, to explain a bit of what I was feeling. I am in a visible position in my work, but she is even more visible (she is in top management, I am not). I asked her if she would help me try and overcome my self-consciousness a bit by getting me out of my office to walk around at lunch, to go to the cafeteria, whatever, and she immediately replied that she'd stop by the office tomorrow and we'd walk around. I do think that will help. I know it is a bit silly perhaps but this is how I feel and I feel like I need someone swinging on the trapeze with me!
I know you cold-capped Sula, and for someone as hair obsessed but hates wigs as much as me, on paper that seems like a good option. I did give it a lot of thought: but ultimately I am NOT a details person, and the details involves to make cold capping work just seemed like more than I could successfully handle. Especially living in a small town: I don't even know where to get dry ice in this town! It would have helped if MO were more supportive (when I asked the attitude was, 'oh you can try that if you want..but our patients haven't had a lot of success with it in the past.' Not exactly a ringing endorsement). But really, it came down to one more thing I didn't think I could deal with. And while I am not regretting my decision, I guess it means I do need to figure out how to buck up and get over being bald!
Ok, sorry for rambling. Thank you crazies for your support. I hope you all have a wonderful day!
xoxox to all
Octogirl
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Octo: Oh, the hair. I feel the same way. DH has always loved my real hair and has encouraged me to go gray and not color. I go to enormous lengths to not have him see me bald. I do have a wig and prefer it: in the midst of all the crazy of these last months, it helps me feel more normal. (Whatever normal is these days.) Of course, we have completely opposite biological clocks so rarely go to bed or get up at the same time. When I was first diagnosed last spring, DH announced that he would be shaving his head and would try to persuade DS to do the same. I told him that under no circumstances was he to do that, that if I couldn't have my own hair, I very much needed to see real hair around the house.
I say CRUMBS. But it's very interesting that the publicity is getting to them.
Gaia, whenever you're ready!
Katy, how are you?
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"But once you've posted in CT I really think everyone energetically has you held. thinking of you" ... All my sentiments exactly
Thanks to all who have replied to my posts. Letrozole makes my hands stiff and a chore to type so don't reply to yours. Just the same I read all your wonderful posts and keep you close to my heart
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Gaia/octo: in fairness, the attending physician at the hospital did clear me for Nautilus/elliptical machine "as soon as I felt up for it", and swimming when the flaking and skin breaks cleared--basically, anything which does not involve bringing my face in contact with shared equipment until my skin has healed...which, oddly, it seems to have done. I think. Though never fear: I'm going to be exceedingly careful about swimming for now.
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Good Morning Crazies!!
PTS, Maybe a second opinion would be a good idea. Just to make sure you're on the right track. Although, it sounds like you were doing so much better until Medicare stopped paying for your PT. That's so irritating.
Rain, YAY to no Tylenol!! Happy three week post surgery!! It's always nice when we turn a corner. Good luck to your DS. I know how stressful those tests can be for our kids. A book!! Wow, I can't believe we didn't think of a Crazy Town Library!!! Which means we need a Crazy Town librarian. We can make some nice, cozy nooks to read, and have the pneumatic tubes routed to library for free snacks and fancy coffee drinks. Good food and chocolate!!....what more do our kids need???
Sula, The cake looks wonderful!! Hope you had a great time last night. Can't wait to hear the stories!!
Octo, Well of course you're crazy!!! We all are....that's why we have a Crazy Town thread!! hahahahaI also got attached to my BS. So much more so than my MO. When I first met her, I thought she was cold and standoffish. I soon realized I was way off on my assessment. She actually came down to radiology twice to literally hold my hand when I was having my core biopsies. She did follow me until just recently, but on my last visit she said, "See you in a year." I was happy and sad at the same time. As far as the hair issues.....I did things in my own time. By the end of my fourth chemo, I stopped wearing my wig and just went commando. By that time, I was tired of the hot wig and hot hats, so I just threw caution to the wind. I know how you feel about letting your husband see. At the beginning, I was ALWAYS covered in some way - even when I slept. I could let my DH change my colostomy bag when I had it, but I didn't want him to see my bald head!! Made no sense. Upon reflection, I realized that my hair was my shield, so much a part of my identity. Once it was gone, I felt naked and vulnerable. You take all the space you want in Crazy Town!! That's why we are here!!
Sunshine, So good to see you checking in!!! How are you doing since your exchange surgery???
Rose, I hate tooth cancer!!
Gaia, Good morning to you too! Hope the food prep goes smoothly. Yes, I agree....not something to read before food prep and knives!! haha
Chloesmom, Hi!! So happy you check in. Sorry your hands are hurting. I will make a mental note to wave at you periodically, so you know, we know you're there!!
Katy, You're quiet. Not like you at all. How are you doing??? Are you in that rabbit hole??? If so, let us know so we can help dig you out!! I've got lots of shovels. Thinking of you.
Lucy, I determined you are 17 hours ahead of us here in So Ca. So if I've got this right, it's 9:53 am, October 14th here, so that would make it 2:53 am, October 15th there?? So weird to think you're a whole day ahead of us. So If I play the lotto today, you should already know what the winning numbers will be??? hahaha.....Wouldn't that be cool if it actually worked that way????
Queen, I'm glad your face looks healed!!
This is how I'm feeling today!! hahaha
Ok crazies, I guess I should get out of my jammies and hobble off to do some errands. Thinking of you all, and I wish everyone a pain free, peaceful day. Love to all!!
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Yes, Katy, where ARE you??? I noticed the lack of you, and now i am getting a little worried
Slow, got my phone plugged in! texted all the juice out!
I had to reschedule my pain management consult.
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Tomboy! hahahaha....mine is down low too. We may be text-a-holics!!!
I did a new blog post on Komen - interesting info.
Edited to add: Katy, don't make me get out the milk carton!!!
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I'm down here
I really cannot figure why. The pink, a lot of death anniversaries and birthdays of favorite people. Hard to get dressed right now. It started a few weeks ago. I quit hospice, holding Jack and Tutti near, just waiting for the storm to pass. Reading now to catch up. Love to all. A hug for mommy. Love to all
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Brought in reinforcements to get you out of that hole!!! Reinforcements available for all crazies that need a lift!!
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Beppy- thank you. How could I not smile at that
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hahahahaha!! I always get a kick out of the way they used to dress. I just can't imagine doing all the things we do in life in a dress!! I'm glad it gave you a smile!! Life is a series of smiles that get us through our day, yes??? Gentle hugs to you Katy.
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Here is another one that ALWAYS makes me laugh. Now don't get me wrong, I totally love my neighbors, but we tend to all know what's going on with each other.
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