INSOMNIACS place to talk in the wee hours
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Queen- I am glad to hear you are going to seek some support through the local cancer center. All the things you shared above are definitely things we have all thought going through it. We are all different here with respect to our dx, particular treatments, other complicating health issues, etc. So each one of us gets through this differently and recovers differently too. This is a wonderful community to ask questions and receive support. Those of us a few years down the pike try to help the newbees. Just like there were sisters here to help us. Thank god for BCO!
Do join the rads thread here if there is one. They can give you a lot of helpful hints going through that part of treatment.
And yes, I am glad I am not the emergency. I had my mammo and ultrasound on Friday, which the rad doc said looked good, so the visit to the BS is more to check on healing, any signs of lymphedema, talk about other questions, etc. It is the easier of the two apts I go through with the follow up process. So next Tuesday will be fine to see her. I am not worried.
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queensmom. - body images issues is something most of us have or are dealing with. My first diagnosis was 13 years ago. I was 31. I had almost decided keep the boobies and die with them. I was married but no children at the time. Dh finally talked me into the bilasteral bmx - although he said he would support whatever I did. He's told me many times since to think of them as battle scars. That without the scars I would prob. be dead. I did choose reconstruction surgery but never went back for nipples. Just so tired of procedures. Dh has always been aroused by me with or without boobs and with or without nipples. I figured as long as he is still sexually aroused by my body after 24 years , I should be happy with it to. I no longer avoid the mirrors when I am naked and don't have to shut the lights off to get naked. Hopes this is not tmi.
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Blondie- waving back. So happy you are living life to the fullest. You go girl ! Are you going to the beach today soon or taking some alone time to rest up ?
SAS. - wake up ! still rereading. I forgot to say that with my RX ins I only pay $2 and some change for 30day supply of synthroid. The generic would be $1 and some change. Was there another reason to switch besides price ? Guess I'll need to reread that again.
Loverly - awesome pics of the beach and blue water. That's on my bucket list. My boys have never been to the ocean. I love the ocean and blue water and sand. So relaxing. Makes my problems seem so tiny. Nice visualization relaxation technique. It worked. Gonna read it to Dh tonight before we go to bed.
Chevy. - what's Daff? Did i miss something. Glad you are enjoying having both dds there. Good to know Sibling rivalry continues thru adulthood. Bummer. Thought mydss would outgrow it. Hope y'all have fun at echo lake and of course take pics. We want to see your itty bitty yellow bakini.
Jazzy - sorry to hear of the unexpected death of the dd of your friend. I'll be praying for their family. Its just not the normal process. Parents shouldnt have to bury their kids
Frenchfrey - glad your Dh got you out for lunch. I know its exhausting sometimes just getting ready and getting there and back. I always feel better when I get out of the house and remember life is going on with or without me.
I've already gotten my am swim in. Swam about 30 minutes. Great exercise without over doing it. Its going to be another day of heat index over 100. Boo. Either staying inside in the ac or in the pool are our only choices today. Ds2 came back home from sleepover and him and neighbors kids are swimming. Ds1 still st his sleepover. They will bring him home later today so I don't have to drive. I still got some sinus junk going on but nothing bad enough to complain about. Well I better get some laundry started. So much for getting an early start to beat the heat. Bbl
Hugs all around
Hootie hoo
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PattyPeppermint: no, it's not TMI at all! but rather deeply comforting to me: others have gotten used to this! Not to mention the NOT going back for a nipple; I wasn't sure I wanted to since it wouldn't feel or react like a nipple, no matter how good the surgeon. (Only one's gonna pop up like a turkey timer when I jump into cold water!) One of the "gerbils on the brain" was "If I'm taking a partial mastectomy this hard, how will I react if I need a complete one?" so it's nice to hear from women who've come out the other side. Though having a husband/partner who loves you with or without breasts is a huge help!
Jazzygirl: Deeply grateful for the boards here, and the knowledge that I can just ASK people who are ahead of me in the process. I've started following one of the rads threads here; I may look into others, if only to find out what to expect afterward, in addition to during, the treatment. Now off to the psychologist!
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Oh Patty you will have so much fun at the ocean when you decide to take that trip. Warn your boys about sand in their shorts.
Jazzy, I am sorry to see that your friend has lost a daughter suddenly. That is not a club anyone wants to join. Sorry for the loss.
Anyone ever notice how long the day is when you are itching?????????????????
I am going to put some music on and walk er hum dance and see if that helps./
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Patty, Alright already I'm awake!. Nope, cost was the primary issue on Synthroid. You're good to go on that one. You sure are getting to be a chattypatty. Now I can beat it into the ground if not your head. All the chit these many month's was thyroid. The doc may not say that. I cancuz I had a 150 TSH too. Never again. I thought I was going to die. They said if I ever had to have RAI 131 again, I would. But it can be chemically induced. They didn't tell me that the first time. Shame on them. I trusted. OH yeah, that was my mistake........Back to you. Think how you are at this moment. Swimming for 30 minutes AND you are a 9.8. GOOD DOG what will we do with you if you get in normal range.
But please, the backstory now. History on thyroid. First dx & amount of drug? Was it an incidental finding on yearly labs or b/c of symptoms? Sequence of increases on meds? How long on 100 mcg? How long since last TSH? Did they ever say you were being tested for Hashi's? Are you going to an Endocrinologist? How often do you see them?
Queen, Wouldn't of thought of this, but Patty's post reminded me of it. I did get the nipples, but in a do over would seriously consider not doing it. In Florida, one of the very uncomfortable things for any woman is wearing a bra. Heat and high humidity. In the period before the nips were done I went braless. It was great. After the nips were done. I have to be careful what I'm wearing b/c the outline of the nips shows through clothes. Particularly, cotton knit fabric. Not appealing. Bummer. Depending on what I wear, determines if I have to wear a bra. Odd the different things that are important to each of us. Glad, you are delving into more threads. I'll send you a PM with a bunch of threads I put together for newbies. They each have a purpose. Some are resource info type, others like here. The resource threads are good for getting organized. Forget where you are on chemo in your plan? If chemo hasn't started, talk with your doc about vaccines. Pneumovax and Prevnar. shingles, and flu. Even measles if your titer is low.
Rosie, thinking of you and Flower.
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Steve's coming home tonight. Making crock pot chili. Oh, must get on the chocolate cake. Was going to make more biscuits--maybe. Yesterdays chicken and dumpling's were great. We ate up all the biscuit's before morning.
Any suggestions on how to make light and fluffy biscuits. I have decided to try and become proficient at them. Such a nice comfort food. The store bought one's have to many foreign things in them. I'm actually having fun with the flour all over the place.
Cake up next
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What did I miss. Patty you coming to the OCEAN? You have a place to stay. I have room for all of you. Rent free!. Honestly, though if you want to pick up and come down, pack the car and head out. Oceans a short 20 minute ride away, and they're is a pool out back. 30 minutes from the Space Center. Disney is 60 minutes to the parking lot. Not having to spend money on hotel rooms can make a trip allot more doable. Spur of the moment trips can be so much fun.
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Frenchfrye From day to day keep on dancing
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sas. -I would love to pack up and head to FL but for now it's just a goal. Although I have enjoyed many pain free days (except 1st and last thing each day ) , still riding to town and back causes pain. I can take a pain pill afterwards and be fine but very leery of the long trip. Hoping to continually get better and stronger. My dh said even if I don't make it back to the ocean and beach that they would scatter m ashes there. Uh - no! That's gross I dont even want my ashes returned to my family. I need to check the law on that. So for now it's on my bucket list.
SAS - thyroid answers : 1sr DX with hypothyroidism around 2007 I believe. Had it checked in 2005 But they said very close to being within range and it couldn't be the problem. Started horrible daily migraines , complete exhaustion ,unable to adjust to temp changes - always freezing or hot in 2005. Also had mother and maternal aunt with hypothyroidism. In 2007 at 2nd tsh test they put me on synthroid 50 MCG. No problems til last year. 2014 during a hospital stay regular lab included tsh test. No increased me to 75 MCG. 8 weeks later showed me on the opposite end of range and I was decreased back to 50. I really didn't think it was connected to hosp stay issues. About 13 weeks ago mo checked tsh again due to original symptoms returning: migraines daily and exhaustion. Was 150. Increased synthroid to 75 MCG . 8weeks later tsh was 100. Increased to 100 MCG. Tsh tested last week I think was close range but close and it had not been8 weeks since last increase . never heard of Hashi's . what's that.
Sorry to bore the rest of you with my thyroid problems.
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Sas-shatzi: yes, please send me the threads? At this point, subsequent treatment is a bit up in the air until Wednesday--depends on whether Dr. Surgeon got clean margins with partial/lumpectomy #2. If he did: radiation, then tamoxifen. If he didn't: skip the rads (I think) and go straight to tamoxifen. No chemo, unless the pathology report this time produces something horrifying/startling. But all the tests so far have indicated only the Stage 0 the mammo/biopsy uncovered this year. Thank God! (My sympathies to all the women who woke up from anesthesia only to find their surgeon standing by their bedside to say "I'm sorry, you're sicker than we thought you were.")
Thank you for chiming in on the nip/no nip issue. Michigan's not nearly the greenhouse inferno that Florida is, even at it's hottest. I don't know if I'd ever be small enough to go braless, if I keep what remains of my natural left breast, but up here there's the cold response. Or in my case, the lack of it on one side. I'm thinking more and more to shoot for some kind of reshaping for my left breast, skip the nip, and go for one of those gorgeous tattoos. Possibly something incorporating the pattern of my scarring--morning glories? honeysuckle? But I haven't decided. Any thoughts, board participants? Emotional despond to lack of nips? Suggestions for tattoo pattern?
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Queen. - more nipple talk. SAS brought up some good points - pun intended. Esp about wearing a bra. I don't wear a bra about 90% of the time and I LOVE it. My insurance paid for me to get some removable life like nipples. They just stick to my skin and pull off easily when I am done, then can restick again when I am ready. They don't look real when naked but put them on with a form fitted T-shirt and BAM I got rock hard nipples.
Chevy. - where are you? Oh I forgot with dds at echo lake. Was wondering why you didn't have something to add about nipple talk.
Sas- no biscuit recipes from me but i bet you and dbf enjoyed the flour all over the place 😉 lol. Also are you trying to tell me to keep it short and quit talking as much ? You called me a chattypatty? It sometimes takes me awhile to understand sly suggestions. You can be blunt with me. I get it. - less talk.
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PattyPeppermint: huh. Good point! Making a list of things to ask Dr. Surgeon about on Wednesday.That'll be one of them! (now envisioning a sort of suction cup dart.....)
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OMD Patty, that was suppose to be funny. I'm not funny? I thought I was funny? Should we have a pole , erhh poll? The point (not the nip), is you are feeling better. YAY! Okay, if you change your mind and want to fly. I got you on this end.
ChattyPatty, Girl do you have any idea what you are doing to us all
Knowing that you have the strength to post. In your case this means you are feeling better. Write pages, my sweet, we will savor every word.Thyroid-----what I've learned in the last two years (May 2013 till now). The minimum being PCP to the maximum being my Bigwig Thyroid doc at Moffitt. Is what is known about the thyroid and it's function, is not good. You are classic for Hashimoto's, but let me go and review. BBL or tomorrow if time doesn't allow.
Male dominated field so dick analogy appropriate. Add to that the primary population of disease problems of the thyroid are among women. Historically, we know where men are the primary treaters of women, disease and causes of disease, and normal conditions such as childbirth have been diminished and devalued.
Keep that page in mind where I went on and on. Chit, pisses me off. The TSH is only one clue amongst many. The thousands and tens of thousands and millions over time, whose care has been mismanaged, because the docs hang their collective dicks on one clue.
Talk more, always more. Dance in the moonlight. Drink in the sun. Make the hug last one more moment
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My hands are slowly getting better. No blisters this week. My face is chapped..go figure. I got the Uncle Fester with the chapped lips look going on.
I have those pictures in my head as I dance Sas!
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Patty, overall this tells the trouble in finding an Endocrinologist. Scrol down to where it talks of Hashimoto's and Hypothyroidism. Endocrin's pass them off to PCP's that aren't trained. Falling through the cracks.
http://thyroid.about.com/od/findingdoctors/a/thyroid-patients-endocrinologists-thyroidologists.htm
BBL
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Back from the psychologist; we arranged for future meetings. She seems inclined to concentrate, for the moment, on stress/anxiety relief techniques, which is entirely appropriate! We'll see if I need chemical intervention as well.
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Patty, I added a dick analogy to my post last page. Soory, it's incorporated not just an add on at the bottom.
Patty edit this is a link to a doc that has hashimoto's. It's only a beginning link. I don't suggest buying any books --yet---maybe later.
Queen: good deal, a beginning
Frenchfrye,, ohhhh do they hurt? You said itch before. Try cold water immersion for about 10 minutes at a time. I'd love to say a cider vinegar soak, but since it is a result of chemo. No clue what that combo might do.
Make ice water, scoop out the ice, and insert hands
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for queenie (new name) (Chevy, you missed it!). Anyway, my 2 cents worth on nipples. Don't have any now. Why? Because 13 years ago I had a breast lift and they move the nipples up. So with the bmx they weren't going to be able to save them. It was fine with me because they have never been very sensitive anyway. Didn't want to bother with reconstructing them either, figured it was just something to go wrong. I did want to have the 3d looking tattoos done by Vinnie. But don't care about that now since I had to have new girls 7 months ago. Maybe someday I'll get a fancy tattoo done.
Patty, OMD, didn't know they made stick on nipples. What a hoot. I'll look those up on google! Hahahahahah
Going with or without a bra- didn't wear a bra with the TEs or implants with the first go-around. Then when I lost 40# the PS swears that's why the girls started hurting and dropping. Now I have to wear a bra or they hurt too much. Didn't change size that much, 550 to 585.
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oh Frenchie, sorry about the hands. Looks very painful. Has your doc seen them? They make a cream with lidocaine that might help if they hurt. Don't know if that's ok with your treatment
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Smaarty: thank you. Nice to hear another "don't worry about it" vote. Just curious: how about the unilateral nippleless look? anyone gone through that?
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Thanks ladies. Yup using lotions,ice,creams,cold water soaks. No blisters this round so that is a plus. I am thinking about asking for some pain med just in case for my next session. I will admit sometimes I just cry when the should pain starts along with my hands. I can handle one pain but these daag hands make everything over sensitive.
Hey I may wake up tomorrow and it all be resolved so there is that to loook forward to.
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Wow you ladies are busy today! Nipples that can be put on and removed? That is brilliant Patty!
The memorial service today was lovely, but also incredibly sad. The service was well attended and there was a nice gathering afterwards. Many young people got up and shared memories. She sounded like an awesome young woman. So much shock and sadness around this though. I knew it would be a tough afternoon. My friend is of course, quite heartbroken.
I got a call from the insurance company today again about more info on the hit and run. Why am I being made to feel like I am making this up? I only had one other hit and run in my life and the treatment was the same. Do they think I enjoy any of this? All the work has been done on this and it sounds like she has the police report so reclassify it under uninsured motorist, so I can get my car in to be fixed please? I will be up for the fight if need be. Twenty or more years with one or more cars insured and no claims, and don't like the way I am being treated.
Hugs to Rose this afternoon. Well heck, hugs to everyone.
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On the road, so I will b quick.
I love it when you are chatty, Patty. We know that means that you have more energy and not in much pain. Would like to hear more from Chattypatty (excellent choice of name Ms. Sas) even if you think your story is boring. Not at all boring. Love to hear about your boys and well, anything. Bless your heart for adopting your boys. Also, I really appreciate your transparency.
Ms. Smaarty, Queenie is a good name for her. I was going to call her the same, but was waiting for Ms. Chevy haha.
Hey Queenie, I am a Uni here with one head light. I'm not going to bother with nip recon because if I decide to go braless, I need only one pasty to cover my nip. I figured why go through the process when you could take the easier route of 3d tatoo
Oh FrenchFrey, your hands look painful. I remember Ms. Spookie mentioned aloe vera sunburn gel with lidocaine also. It might help.
Hello everyone I missed
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Queenie, I'm flat and happy. No recon, nips, or tats in my future, ever. No bras, foobs, poofs, nothing.
If somebody thinks I look weird flat, their problem, not mine. My only problem has been swim wear, and I'm working on that.
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Rosie, soory about Flower, hugs
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Nope,didn't get out of the car at publix
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http://www.pink-perfect.com (Fake nipples)
www.straytats.com (tattoos)
queenie, if you want to try out a tattoo without getting inked then you can order a temporary tattoo just like what the kids where. I was thinking of trying this out if I ever get a real one for the boobs.
Ok, found the prosthesic nipples. $280 for a pair. Lots cheaper than $800 for Vinnie's 3-D tattoos. Might be interested after I get back from Ireland. Maybe have Santa give me a pair!
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I slept AAAALL day! But now I feel like I've got a little energy as opposed to the last round where I had zero get-up-n-go!
Frey--those hands look painful! I've luckily avoided skin issues until I woke up a little while ago and noticed red spots and swelling at the corner of my mouth. It's almost like chemo says to us: "Well, you managed that curveball, let's see how you handle this one!".
Chevy--I get the travel genes from my parents. Dad was born in PA, mom in AR, so every other summer we would pack up the station wagon and head east. On the opposite summers, we would go to Hawaii. Dad is a retired engineer that worked for the Navy so he had to go to Barking Sands, Kauai for missle tests so he would take his hotel room per diem and rent a condo for us. So I've been to 49 states (Alaska is on the Bucket List). In between trips, we camped a lot. Camping is a LOT of work. It's much easier to stay in a hotel and have someone else cook and clean up after you.
Queenie--we have a lot in common. My dad is also 77 and has had 2 cancers: prostate @ 65 and chronic lymphocytic leukemia @ 72. I still end up talking to him more than my mom because she's a retired RN and kind of a hard ass. There was no helicopter parenting from her! Love them both, but my dad's always been the empathetic one. It can be awkward at first, but since this is my third go around with breast issues, he's used to it. The first was a benign prolactinoma on my pituitary gland (prolactin is the breast feeding hormone). The second, on Christmas morning 2010, involves a pot of boiling water for blanching, 2 pounds of Brussels sprouts and a klutzy woman. That equation will get you second degree burns that cover all of both breasts in the pattern of a Valentine's heart with the point being just above the navel (couldn't have drawn it better if I'd tried!), plus three weeks of debridement and a nip that likes to play more hide than seek.
So on the nipples subject, I have had a lumpectomy for my BC but I have had nipple reconstruction. Even after surgery to fix the inverted one, it's not right, won't ever be right and I'm okay with that. Most of my pigment is gone from both nipples from the burn and I've contemplated getting them tattooed but I've decided that I've got better things to do with my time.
Sas--oh, the dick analogies. When my dad had prostate cancer and opted for surgery, he made all kinds of Dick-ectomy jokes. Talk about awkward--when all of us children were in his hospital room after the surgery, the first thing my mom did was throw back his sheet and say "Yup, still there. Just checking!".
Loverly--thanks for the guided meditation. That's pretty much how I go to sleep every day.
<waving at anyone I missed!>
I think the other reason that I may have slept all day is that today is the 37th anniversary of the death of my older brother (auto-erotic asphyxiation at age 13). It gets easier, but it never completely goes away.
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Can't get to sleep. Yea. Glad I have so much energy now I just got to find a way to burn some of it off during the day. Everyone is asleep here. I think I am going for a swim. Dh hates for me to be out there in the dark alone. Told him if someone comes us I'll just flash them my boobies. That should put them in shock long enough for me to grab my gun. I usually keep my ruger within a couple steps anyway. BTW Dh didn't find that funny at all. Nothing like swimming naked in the dark alone. Such a peaceful time for reflections. The only problem is the MOSQUITOES !!!! Gotta keep moving and keep head (and bottom ) under water as much as possible. I also always put our dogs on the porch. The little one barks at everything ! Better false alarm then no alarm at all 😀
Glad to hear a few people don't mind my long posts. Its just you guys are like family to me. 😊 The good kinda family. Not the ones we hide from. Lol seriously think I would have gone crazy without wonderful friends from bco.
Well I am off to get naked and swim
Hootie hoo
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