CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Proud: my spine sends your spine its deepest sympathy. Definitely a pocket pal for your injection! (I don't remember mine being bad at all--weird feeling of cold needle wiggling around--but hoping yours is no worse! (different diagnoses, ets.))
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WAITING! WAITING! WAITING! And feeling a tad crazy.
I just came back from having my Jackson-Pratts removed and I'm about to head out to the grocery.
I did pick up a copy of my BRCA results and spent the last hour researching my specific mutation.
Genetics and DNA seem so simple to me and I've found the people who are working on my specific mutation at a university in another state. I may have to take a road trip to discuss things with them in person.
I'm having my genetic counseling tomorrow from the blood tests last Friday. I should have loads more info to work with. I feel I'm on a tight schedule because my next appt with the MO is 4/21. I hope I find the solutions by then so I can speak with him knowledgeably.
I am so THRILLED to have found the scientists doing the research so easily. Maybe I can get a more targeted therapy.
Genetic Counseling? Seems like they primarily want to give me ways to talk to my family. I've found outlets to share this personal info via YouTube and Facebook. Being of the 3rd generation with cancer, I spoke directly to my generation and am leaving it to them to share with their descendants at the appropriate times. Some of these at risk kids are still kids.
Anyway, I'm excited about tomorrow. Knowledge is power!
I hope you all have a WONDERFUL day!
cb
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well home from shots, too soon to tell how it will do but no pain now
Checked with doc and wine tonight is ok
Thanks for coming, with me, my nerves were a mess
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CJ, the climb sounds wonderful but I’m afraid I can’t come along--I’ve never done a technical climb before, and both the altitude and upper-body weightbearing would play havoc with my lymphedema.
Speaking of LE, wearing a sleeve & gauntlet worked fine on my 9+-hr. flight from Paris to Chicago yesterday. I think that LympheDivas’ gauntlets fit me better (fully covering the first knuckles up to the bottom of the fingers) than Juzo’s, and are much comfier than gloves. I wore the Lotus Dragon tattoo pattern, and got lots of compliments. I might order the leopard-print set too.
Iris, here’s hoping those spinal shots do the trick. They did for my mom’s stenosis.
Spoke to my friend with DCIS. After several runarounds from two different medical centers (Advocate Christ wanted her to get an MRI-guided biopsy of a second left breast mass but couldn’t fit her into their “donut” and sent her to Lutheran General; but Lutheran declined to scan her left breast because she’d decided on a mastectomy, but re-mammogrammed her right breast and insisted on an US-guided biopsy of a mass they saw in it--turned out to be ADH), she has decided on a BMX w/o reconstruction. Her surgeon tried to talk her out of it by showing her mx “after” pictures, but she held firm that at 70, she hasn’t needed a bra for over 30 years and didn’t care what her chest would look like; and that if any of that ADH got left behind and eventually morphed into DCIS, she’d have to go through all of this again. She’s seeing Bob tonight for a checkup, and will schedule her surgery for after Bob & I get home from San Antonio Sun. night.
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Proud, I didn't make it onto the thread in time to squeeze into your pocket, but I'm glad you got the shot. Hope it works!
CB, glad your drains are out!
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so, I can remember some discussion here (or possibly on another thread?) about 'trigger thumbs'...I have had thumb pain for a while, presumably because of my arthritis, but the last two or three days I finally get what people mean when they refer specifically to 'trigger thumbs'. It is annoying and gets in the way of work! (and is a bit painful). Thing is, I am on an Arimidex break (until I see my MO next week, to try and figure out how much worse my knee pain is on it)..and I thought the AIs cause trigger thumb? So, what is causing it in my case...Add to that my general malaise (I keep thinking I have finally beat the crud, but it keeps coming back. Tonight I am just plain tired..) Anyway, do I have thumb cancer?
Tried to show the trigger thumb to hubby but he says it creeps him out...bless him: losing a nipple doesn't faze him, but trigger thumb does?
Square in CT tonight gals, if anyone wants to join me on the porch I could use the company!
xoxo
Octogirl
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I am joining you octogirl! MO said to take a anastrozole break but his next drug of choice is tamoxifen. Not sure how I feel about that. I don't see him until May. Sorry about the trigger thumb. Sounds awful.
CB, congratulations on getting your drains out. What genetic mutation do you have?
I am so tired of not feeling well and I didn't even have chemo.
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octogirl, my left thumb has off and on pain (side lump was removed on), but I'm on no anti hormonals. It's where the finger joint is that is at the base of the thumb.
Who knows what it is about?
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Octi.. Sorry about your thumb.. My hubby has been diagnosed with RA in the last few months.. and he has it happen sometimes.. Drives him insane.!!
Rainny.. The quilts are beautiful..!!
PTS..hope those shots do the trick for you!
Katy.. I think your left -over material is going to make beautiful quilts ! I can't wait to see the photos !
Molly.. Sorry you aren't feeling well. (( hugs.))
So.. Our grand - kids ( 6 and 3 years old) have been staying with us for the last couple of days.. Hubby saw them playing in our clothes cupboard with my fake boob.. He said he better put it away , so they asked him what it was.. He told them that it was the pillow he used in the bath so he could be comfortable 😃 HaHa !
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Lucy, so cute about your grand-kids!
So, okay, the thumb. I think I started the discussion a few weeks ago. My left thumb (LE side, also I am left-handed) started cracking whenever I bent it, also right at the base as well as the knuckle. My right thumb did it very occasionally. I asked here, and a few of you spoke up, with a range of diagnoses of ER+-, HER+-, treatment of chemo/rads/AIs, etc. So I asked my LE therapist, and she said it's something she sees fairly frequently with BC patients. She says it might be something called De Quervain's tenosynovitis. Also known as blackberry thumb. At the time, it was pronounced and painful. I was going to get a referral to a hand specialist if it didn't improve. I started wearing the LE glove 24/7, and it did actually get better. It's not 100%, but most of the way there. I'm still going to bring it up with the MO when I see her on Friday, though.
That's all I know, but I'll report back if I hear something else.
And I did a stir-fry last night, so the LE glove smells like sesame oil. Oops.
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Octo....and anyone with Trigger finger.........I was on Femara and that was the first SE I got ibecause of cost I went to Letrozole........(Femara generic).......I had all kinds of SE's on both, but the trigger finger did ease up on Letrozole.
SE's got more then I could handle after 4 years and decided to stop it.......I did and after 3 days off Letrozole my SE's eased up some, not completely, but the dizziness, and "poor gait" did improve...aches and pains still existed.....
I had bad knees to begin with, but it got much worse when I started on the AI's.....significantly worse.......so long story short I decided after the 4 years to qui;t.............
After around 1 month off of Letrozole I became a bit concerned so decided to try "Arimidex"...just to give myself every chance available to me.......so I bought a 30 day supply , just to try it and see if I could tolerate that drug............It was only 4 days on Arimidex when the SE's came back "like gangbusters".........I thought, well maybe they wi ll ease up..............was not going to happen.........so after one month of hell I decided to stop the Arimidex too............well the SE's from that drug "unlike Letrozole" did not go away...................did they subside a little, "yes", but the knees, thumbs, feet still hurt...some days a lot, some days not as bad, but the aches never go away.............the only thing that returned to normal was my hair..................the AI caused thinning, but now after almost 6 months off the AI, my hair is thicker..............
So judge for yourself.......do I think AI's cause arthritis......no, joint stiffness....yes...but if you have any form of arthritis the AI does make it worse........and in some cases even after going off it............you still hurt...........but always give yourself the chance to (no recurrence)......I tried we all deserve that, and you might be one of the lucky ones who get no SE's......but by all means......"TRY".............
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morning
So good to hear of folks who had success with spine shots, feel pretty good today, did some stretching this morn, checked doc office and per instructions will take it easy and drink the h2o
Right now wish I had done this long ago
Sigh
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duckyb! Good to see you. My SE's on Anastrozole are similar to yours on Femara, the most problematic being vertigo. Hopefully it resolves in my two weeks of vacation.
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Trigger thumb is tenosynovitis, though not always of the DeQuervain's variety, It's caused by a nodule forming on the tendon (most often caused by inflammation due to aging, obesity or diabetes) which causes the tendon sheath to get caught on it as the thumb is flexed and extended. A cortisone shot can help the knot shrink enough for the thumb or finger to move smoothly, but after 1-3 years the knot grows big enough again to cause a recurrence. Too many shots can thin and weaken the tendon to the point where it can break, requiring delicate and complex surgery. But the condition can be cured before that happens with a procedure called tendon-release, in which the surgeon makes a tiny incision in a crease at the base of the thumb and slits the sheath just enough to produce free motion. It's one of the most effective of all surgical procedures--more so than even cataract surgery or impacted molar extraction. You will probably need to work with an LE therapist if it's the arm on the sentinel node biopsy side--they'll want to wrap and do manual lymph drainage. Recovery takes about 2 days after the shot or about 10 days-2 weeks after the surgery (sutures are removed at 10 days).
Since most syndromes of aging in women are directly attributable to loss of estrogen, AIs are a logical culprit here
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Good Afternoon Crazies!!
Poppy, No I've never heard of camp Ilene. I did Google them though and I think they have a lot to offer for a healthy dog. My DD's dog is old and blind, so I'm not sure he would benefit from all of the activities. I called yesterday morning and my DH and I went to see him last night. He seems to be doing ok. They said I could visit him every day to check on him. I feel so guilty for boarding him.
Rainy, I'm working on it!! Thank you for posting the quilts!! They are all so wonderful. The third one down looks a bit like the one JAN made for me but her pieces were smaller which I'm sure was more work. Just beautiful. We will all be in your pocket on Friday!! I hope all goes well with your MO appointment.
Molly, I'm happy to hear Wyatt is doing well. Enjoy your break....I hope you're able to put the Tamoxifen choice out of your mind until May. Sending gentle hugs to you!!
Katy, I love the colors of your new quilt. I can't wait to see it all come together.
QM, Waving to you!!
JAN, So good to see you posting!! I'm thrilled to hear you were able to get out of bed. Are you up to the trip to get your eye shots on Thursday?? I would love to take all the crazies with me on my road trip. Maybe my DH wouldn't notice?? haha Yes, the plan is to go in July. My DH doesn't have much time off, so we will try to link it with the holiday and a few weekends. Hopefully I'm healed enough to travel around the holiday.
Iris, Sorry I missed your pocket party. I just hate that you have to be in so much pain. I'm VERY happy to hear you're getting some relief!! Take it slowly.
Cubbie, Yes, I agree. I think that may be why we all reside in Crazy Town. Thank you for your good wishes!! I'm glad I was able to give you a good laugh. Laughter is always good medicine for me. BTW, I can't tell you how many times I tried to put my non-existent hair in a ponytail. Or, I'd try to wash it in the shower. I've even gone so far as to put shampoo on my bald head. Habits are difficult to break. I'm glad I can do a ponytail again!! My DH and I live at Lowe's and Home Depot. We like to dream about all the projects we would like to do. If only we could win the lottery - we would have a blast!!
Sandy, Be kind to yourself. Traveling takes a toll on our bodies. I hope your appointment goes well for your kitty. It' just awful when our pets aren't feeling well. Sending best wishes and minimal SE's for your friend. I hope her surgery is complication free.
Octo, I've had a thumb problem for a long time but mine is caused from my RA. I know they make splints for trigger finger/thumb. You can also get cortisone injections if it gets really bad. Although, I must say that injections into the wrist/hand/fingers hurt like a MF - excuse my potty fingers. I'll come join you in the tree house. We can eat tasty treats and drink wine!!!! We will all be in your pocket on Thursday. I'll make sure we keep the crumbs to a minimum. You know how messy this group can get. Your garden sounds lovely. There is nothing like the taste of fresh tomatoes!!
CJ, That's an excellent goal. When I recovered from my illness in 2003, my goal was to hike into our little canyon and see the historic adobes. That was a huge accomplishment for me after a three year rehabilitation.
I must admit I was feeling a bit pukey when my DH took this pic. hahahaha It took me a really long time to get there but it was well worth the effort. I've promised myself I would do that again someday.
((((Twinnie))))) How fun to have those beautiful grand-kids staying with you!! OMgosh!! I almost fell out of my chair when I read about them playing with your boob. Too funny Lucy!! hahahahahahahaha Nice save by your DH.
Ducky, So good to see you.
DH and I are coming your way in July. We are going to pick up Blondie and spend the day with her. Would you like to come too??? We could pick you up or you could meet us somewhere?? It would be so wonderful to see you in person. Ok, I've rambled on enough.
Here's a good one for the crazies.
hehe
Love to all...quiet crazies too!!
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Foolish. Seems after talying to my pt guy, i have been working out tooooooo much
Stupid me
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Hey, everyone. I am in the Crazy Town waiting room today, and since Friday. I had my six month scans and blood work, and everything was fine. But. They found a cyst on my right kidney, so I had an ultrasound on Friday. The ultrasound people always seem kind of gloomy, and they tell you nothing. I thought my MO would call me Friday afternoon, but nothing. Yesterday, nothing. Today, I called them, and they said he would call me today. I asked different people, and they all said they had never heard of a cyst on the kidneys. So, I have something nobody's ever heard of, and I am waiting to see what is going on. Oh, and my doctor, when he said my scans and blood work were good, told me and my husband it was a cyst and they are benign. Looked at my husband and told him to remind me of that, because he knows how I am. What ever he means by that. If he doesn't call me this evening, I will be a basket case.
Has anyone else here heard of a kidney cyst.
Thanks, Lisa
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LCM - I'm a firm believer that if there is bad news, the doctor will call as soon as possible. Evidently Kidney cysts are fairly common. I looked it up - here are the words I would focus on - commonly, kidney cysts are a type called simple kidney cysts — noncancerous cysts that rarely cause complications. Simple kidney cysts are often detected during an imaging test performed for another condition. Simple kidney cysts that don't cause signs or symptoms usually don't require treatment.
Hugs!!
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Thanks a lot for your reply. I have a good doctor, and I guess he is just really busy. My son told me that no news is good news, basically like you, that he would call sooner if it was something not good.
Lisa
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(((((Iris))))) Please don't beat yourself up. It's all a learning process. I admire how much you work at feeling better. I've learned many lessons from you.
lcm, Welcome to our Crazy Town.
I'm sorry for the reason you are here. Waiting for test results is so hard. I don't know much about kidney cysts, but I'm really liking what CJ has posted. Please pull up a chair....we will all wait with you. You're never alone in Crazy Town. We will feed you snacks through the tube and Ativan sprinkles. I'm keeping my fingers crossed that you'll hear good news tonight!!
CB, Congratulations on getting your drains out. I hate those things.
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Slow, I love the pic of you! You are so pretty we should see more of you. lcm, welcome!! I hope your lack of hearing from your doctor is because it is good news!
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Molly, You are so kind to me. Thank you. That picture was taken almost 9 years and 50 pounds ago!! haha I wish I still had my girlish figure.
My DD took this a few days ago in Japan.
I think we need one of these trees in CT. Can you imagine a nice comfy lounge chair under the tree with a nice cool breeze blowing? Maybe we can plant one within walking distance to the tree house????
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I vote yes for the tree but can we add a swing on the beautiful long branch?
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Great idea, Molly! I love it!!
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Sorry, what? I was out getting filthy in my garden (got pictures of daffodils and hyacinths and a thoroughly impudent something or other in the viola/pansy family right smack in the middle of my lawn)
Definitely a vote for a flowering cherry(?) tree with a comfy swing from the branch.
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My trigger finger was not just my thumb.....it happened in many of my fingers, and did not start till I was on the Femara for around 2 months.............eventually it did ease up some, but never went completely away.......I have had injections in bony appendages one time for another condition, and Lord Slow is right...I would never do that again........
Hang in there, sometimes it eases up...........
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Beautiful tree. Please ask DD to stuff one into her suitcase, and we'll plant it in C-Town!
Lcm, I also will chime in with a guess that they would call you quickly for bad news, not so much good. Says she who has more than once worked herself into a lather because the phone didn't ring.
Can I come visit some of you guys for the next couple of weeks? The NY primary is two weeks from now, and it is driving me insane. We're not used to this; usually by the time they get to our primary, everything's pretty much decided!
I posted this article in another thread: a very moving piece by a writer who was diagnosed with BC, and whose mother died of it. Warning: don't read it if you're feeling fragile. But it's well worth the time: http://www.newyorker.com/books/page-turner/afterli...
Enjoy your evening, crazies!
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I guess it is really good news, since he didn't call again today. It's 7:45 here, so maybe tomorrow. Sometimes, when my son or husband and I are driving somewhere, the song, "I'm going off the rails on a crazy train", comes on the radio. I have told them that I feel like I am going off the rails on a crazy train, sometimes. Tonight, for one. I will be having an Ambien for dessert tonight.
Thanks for your support, and for the welcome to Crazy Town.
God bless, Lisa
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Rainny (and whomever): the primaries in Michigan, Indiana and Illinois (all the states from which I receive television and radio broadcasts) have long since come and gone. Welcome. I can provide tea and blueberry muffins.
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