CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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When I mentioned that I “overindulged” on pasta, gelato & wine in Italy, my MO smiled and said she’d have too. She was more impressed by all the walking I did and that Bob & I shared every dish. When she asked how I was handling the letrozole, I realized as I recounted my SEs how very minor they are so far compared to many others’ experience on AIs. She was sympathetic about Humana’s insistence I “fail” 3 months on generic anastrozole before they’ll pay one penny for any generic letrozole, but was firm that for me letrozole is a better drug (and I can handle the $30/mo). I was going to ask Bob if we could afford the $5K/shot for Prolia, But if the decision can wait till I find a better Part D carrier, then I won’t press the issue. He says he’s never been turned down for a prior auth. for any of his patients with any carrier, and would be willing to go to bat for me in that regard.....but as my spouse, it’d be unethical. I see my shrink on Monday--he’s the one who referred me to Dr. Favus, the “Bone Whisperer” at U. of C., who successfully got prior auth to put my shrink’s wife on Prolia for osteoporosis (not bc). I will ask him if I should go see Favus and have him try an end-run around my MO regarding Prolia (he’s the top bone endocrinologist in Chicago and said via e-mail that given my DexaScan “doing nothing is not an option” and his opinion might carry more weight), but I really like my MO.
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back from primary care visit, she thinks I should get handicap plates for my Car so that is on the to do.list. shne sort of calmed me down a bit, she always does.
The mri are to follow a spot on my spine but she said the report does not sound like cancer so that is good. She gave epi pens as my reactions to meds are Scarey also wants me to get one of those lifeline things in case I fall
Tired
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I guess most of us younger than 80 are too damn proud to start wearing a life-alert pendant--it feels like an admission that we’ve become our elderly parents. My PCP’s NP didn’t ask if I needed a temporary HC placard, and my MO would definitely disapprove--she wants me walking and going to the gym, and it’s pretty hard to justify that with a placard dangling from my rearview mirror.
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I have been doing lots of gym time and yeah, doc wants me to keep going but need some help just to get to the gym right now
Feeling more positive that whatever is wrong with my nervous system or back, that now I have a team to help me get a solution, I want to be able to do some travel and not been able to
Dang, saved my money and hoped to enjoy my retirement so focused on that
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Hi Crazies,
I'm sorry I'm so behind. I promise to catch up this weekend.
I've missed many pocket parties and I feel really bad about not being here.
Iris, I think it's good your doctor has encouraged you to get a handicap placard. I have had one for years and it really comes in handy when I'm not feeling well. When I'm feeling good, I don't use it, but when I'm feeling really bad, I'm grateful for having one.
Gracie, I was so sorry to hear about your mets diagnosis. I'm still trying to get my footing from my own diagnosis, so I know just what you're going through. Please know you're not alone though. The women here have been so wonderful to me in my time of need. They are all so caring and loving. If you'd like a texting buddy, just let me know and I'll be happy to send you my contact info. Sometimes it helps to know there is someone to help calm your nerves when needed. Many of us text during the day or at night and it really does help. It's especially helpful when we go to our appointments. It's like having someone there with us.
Molly, Sending healing thoughts your way. I hope you're able to rest this weekend!!
pennsygal, It seems like it's always something, huh? I hope you get good news from the endo doc. Rant away!! It's good to get it out.
GMA, Would they consider a bilateral US instead of a mammo? It can't hurt to ask.
Rainy, I'm so sorry to hear about your DS's friend. I've added him to my list of prayers. I hope he improves soon. It's awful to hear about anyone going through something so terrible, even more so when he's only 17.
Here is what's going on. In my May pet scan which was a month after my lung surgery, it showed a 4 cm mass, what they thought was a bone met on my rib, an enlarged hilar node and fluid in my lungs. The bone met was in the same spot where they had my chest tube placed when I had the surgery. My question was can't everything you're seeing be a result of the surgery? I was still very sore and I knew I was still healing. My new MO asked the surgeon that very question. I was told no, it's more cancer. They also found a small nodule on the opposite lung (right side). Of course, chemo was the treatment of choice because of the TN diagnosis and I wouldn't qualify for a trial because of my RA. I was also told by my old MO that I would have 6 months to a year to live with no treatment. Can you imagine? That's what I get for asking!! You all know this decision regarding chemo has been a difficult one due to the increased risk of infection. Lowering my immune system and getting an infection has been my biggest fear.
Fast forward to the results of my July CT scan with contrast. They are now calling my 4 cm mass a granuloma, they no longer see a met on my rib, the fluid has resolved and my node is still enlarged. Hmmmmmm. Now they are seeing three more nodules on the opposite lung (right side), which brings the total to four nodules. Two are around 1 cm the others are tiny - too small to biopsy. My tumor markers are NORMAL.
So now I'm asking myself if my body healed what they thought was cancer in May, or maybe they read the scans wrong, and what they were seeing was the result of my surgery just like I thought.
My DH and I had a very long chat with my new MO about quality vs. quantity of life. Once again, I cancelled my upcoming chemo. She also agreed to scan me every 6 weeks.
I've been making many positive changes in my life. I changed my diet - cutting out dairy, sugar and red meat, I'm getting exercise, I've started meditation, I've signed up for a Reiki class, I'm researching supplements and most importantly, I'm trying to get more sleep. That's the reason I haven't been around too much. Typically, I would take a few hours every night to get caught up on BCO and all the wonderful crazies. Trying to coordinate all these different components has been a challenge for me. Time management is next on my list!! haha
I've got a play to go to in a few hours. My 8-year-old niece has had rehearsals all week long and I can't wait to see her perform!! I'll be back later to catch up some more. I've missed you ALL so much!!
Love to all....quiet crazies too!!
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Beppy!! That explains a lot of your hesitation for chemo. Your body just needed to heal from surgery! I am always praying for you and your lifestyle changes sound very smart, especially the sleep part. Stress and lack of sleep have been a constant in my life for years. Since cancer came calling I have found that I have to sleep. Unfortunately my DH pays the price for my need to sleep.
Love to all you crazies. I am exhausted but healing.
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Beppy: working on your general health sounds by far the best plan! Partly because of the quality vs. quantity of life--it doesn't do any of us to be alive if we're unable to do anything with that life. But also to make sure you're as healed as you can be should you need (and I don't think you do either just now) more significant medical interventions. Chemo. Surgery. Whatever.
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Twinnie.. You are always in my thoughts and prayers...You know YOU, you know your own body, you have to do what's right for you.... I hope you have a great time at your nieces play.. They are so cute at that age !!
Molly.. So glad to hear you are healing.!
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Beppy, glad to hear that the 4 cm mass is now classified as a granuloma. And also strange that since it was right where the tube was placed that they initially called it cancer. I guess it just reinforces that we have to be our own best advocate, doctors don't know everything!
Also glad to hear you are trying to sleep better. I've always been able to sleep, but about a week ago my husband started giving me melatonin, which I have always pooh poohed, and it does seem to help me sleep more rested.i don't discount all the efforts to strengthen the body, and glad to hear you are heading in that direction! My husband is the king researcher of supplements, so if you ever have any questions pm me at any time. I don't know what he is doing or giving me, but I went to an integrative physician who ran a set of tests on me to measure my immune function and it measured as better than a 20 year old so he couldn't make any recommendations.
PM me any time you need a friend. Much love and hugs!
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Italy, Thank you for your kind words and your support. I hope we get to meet someday. Please let me know if you're ever in my area. It would be wonderful to have lunch with you. Big hugs right back to you!!
Di, Thank you!! I love you all too. I did get a chuckle out of you bringing bug spray to GMA. Too funny! Have you tried doing a Google search for your cousin? I sure hope you find her someday.
Poppy, I miss you sweet woman. We need a lunch date SOON! I hope you can get rid of that nasty cough. I think our pre BC friends are oblivious. Although, I do have one childhood friend that keeps very close contact with me. But we are more like family because we've known each other so long. Our BCO friends all get it and know what we are going through. I think it's a good idea to talk to someone. That's on my list too for my next MO appointment. I started seeing someone when I went through pain management, but we didn't connect too well. I hope your son's friend was able to get a treatment plan in place. Thirteen is way too young for any of this nonsense.
Tomboy, Great to hear your energy is increasing!! We should celebrate!! Lunch with Poppy, Molly and all that are interested????
Rainy, That was so funny what you said about getting Ducky's family mad. hahahahahaha That just cracked me up!! You really need to chat with Ruthbru. She is really into history and I know the two of you would have some interesting conversations. She's also amazing!! She posts on the exercise thread. I ALWAYS enjoy hearing about the latest book you're reading!! I love the idea of frozen blueberries!! DH and I just bought some today. In the freezer they go!!!
Octogirl, You can come do my dishes any day!! I bet I have more dust bunnies than you. I hope your pain has gotten better. I think we all need to walk more. Did I just say that??? Silly me!!
Iris, Did you have lunch at the coast? Did you get the crab you love so much?
Robin, Vanilla Berry Coconut Popsicles sound wonderful. Thank you for the recipe!! I think I'm going to make some. Ok, I confess....my DH will make them, not me. haha
Shorfi, That's really such a shame that your siblings didn't help you with your mom. Her loss must have been so difficult. I miss my mom every day. ((((((Shorfi))))) Enjoy your break!! We will leave the lights on so you don't stub your toeswhen you return!!
M0mmy, I always lose time when I've had surgery too. I wonder if we all do? I'm sorry to hear about your DH's grandmother. It's wonderful you were such a great support to your DH during that time. It's difficult for families to watch a loved one decline. Sounds like your GYN doesn't really want to see patients. Good grief.
Twinnie, Thanks for always thinking of me. I can't wait for you to visit!! We will get as many Crazies together in your honor. Maybe we can have an old fashioned slumber party!?!? That would be a blast!! How did your DD's birthday go on Monday?
Jan, How are you feeling? Have you recovered from your adventure? Thinking of you!! Please let me know when you're in town. Are you up for a slumber party? haha
QM, " snhiznitz" ??? I love that word!! BTW....you're awesome. Just sayin'. I really enjoyed hearing about the contents of your welcome basket. I needed a good laugh!!
Ducky, How are you? Still traveling from shore house to shore house? I bet you're having a great time!! I miss you!! I hope Lila had a wonderful birthday. I hope you took pictures??
GMA, My DH and I saved a small amount for our vacation. Nothing close to what we needed. We charged the rest!! haha I just got the bill recently.....GULP! I hope you're able to go have some fun. Even a weekend getaway would be nice. Thank you for the kind words of support!! I just may call you one of these days! That's great that your mom is doing well in the nursing home. 500 miles is so far to drive. Thank goodness some of your sisters are closer to her. I can't believe that you ALL got BC. That REALLY is crazy! Enjoy your time with the grands!!
Fraidycat, How did your pet scan go? Did you get the results yet? I'm sorry I missed your pocket party. Please let us know when you can. It's ok to be scared. Just remember, we all are scared too!! Thank you for your kind words.
Val, Waving to you!
Jumble, First I'd like to welcome you to our Crazy Town.
I'm so glad you found us. Please pull up a chair and get comfy. We will all be in your pocket next week for all your tests. It sounds like you've been through a lot. These tests ARE scary, but you've got a lot of support here. We are right by your side. I hope you're able to still see your mom!
Sandy, Good news on the labs. Doing the happy dance! Sorry you had to wear your ugly sneakers.
Gracie, Keeping you in my prayers!! Hang in there. Stinkin' cancer. Sending love and hugs to you.
Smurf, Happy Birthday to your youngest grandson! Wow, I can't believe he was born in a car. What a great story for him to tell when he's an adult. I hope your cold gets better soon! Gentle hugs to you.
Molly, There is nothing like getting cleaned up after you've had to feel yucky for a few days. I'm glad to hear your DD helped you! I hope your bruises and edema is better. Sending hugs for Wyatt! I'm doing the official happy dance for B9 results! I hope the constipation has gotten better.
The play was so much fun. My niece did a great job!! I think I'm FINALLY caught up! Woooo Hoooo!!
Thinking of all the crazies tonight. I hope you all have a great rest of the weekend, free from pain and worry.
Love to all...quiet crazies too!!
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Morning slow, glad you got yourselves caught up with things.
Yeap, more than likely the day I said I would head to the coast, we'll at this time of year I go mostly week days to avoid traffic and the week enders
We'll hoping I have my signals straight and thought I had my cleaning person coming but she did not answer my e mail last night, think a talk in order as i do like to know if she is coming
Gonna be a busy week with appts, starting Monday with tons of blood tests, hoping all this stuff clears up what the crazy thing going on with my back
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Beppy, glad that time clarified that you don’t have mets! Your story seems to be a textbook example for getting second opinions, or at least not unblinkingly accepting initial medical evaluations.
Iris, in the event you do have to limit your physical activity from now on, that doesn’t mean your traveling days are over. There are tour planners and travel clubs for people on a whole continuum of physical disabilities. Granted, there are many foreign countries that have very few disability-access accommodations (restaurant restrooms in the basement, hotels without elevators, high-sided bathtubs w/o grab bars or hand-spray showers, train stations with neither escalators nor elevators, having to climb and descend stairs to cross canals, cobblestones, cobblestones and more cobblestones), but there are still foreign & domestic trips that take measures to either deal with or avoid that. Many major cities offer guided tours using rented Segways. And wheelchairs in airports are wonderful: they speed you through both security and border control and liberate you from the international-arrivals long march down the cattle-chute! I’ve long since shed my pride concerning that, except for domestic travel for which I’m TSA Pre-Check and where airport corridors aren’t that long.
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Iris, I hope all your appointments go well. Beppy, I would love to get together depending on when my surgeon tells me it's safe to drive and I get these stupid drains out. I still hope to return to work on the 22nd. Feeling a little stronger every day.
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thanks for the thoughts, it is still something that I am fighting, keep hoping I will find the solution
After my cleaning gal left, I headed to the gym for a short visit, it does help to keep me feeling up
Course the coming week is loaded with doc visits but hope to get to gym a least a bit
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iris...Glad the gym is helping you.. I want a cleaning lady too!
Twinnie.. I love slumber party's....with wine. 😃
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lucy, my cleaning person comes only once every 6 weeks and does stuff i cannot do fr myself
Not that much and cheaper than moving
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Most cleaning people don't do the things you really need done.....like blinds (if you have them).....baseboards around the rooms.........Windows, inside and out........doing floors (hardwood) with something other then a "Swiffer"...............the things many of us can't do ...(older women, people in treatment, people who are recovering).......
Face it....anyone can clean a toilet, wipe counter tops, clean a bathroom, and run a vacuum.......not being mean, just saying .......most of them do surface cleaning.........if your fortunate enough to get someone who does "it all"........your one lucky lady.............and if some do........you pay a hefty price for the service.
I have looked into it.........in our area you would pay $100.00 or morefor surface cleaning..........hope I didn't offend anyone........just saying...........plus they are there for a very short time.........
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my experience is they do what you ask tthem to do, have had several over the years but could not keep up with my place given back issues without my gal
I did have bad luck with couple in the past but happy now
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hello crazies,
I know it's been about 2 mos or so since I was here last. I've been busy with work and dr Drs Drs...I'm pretty overwhelmed trying to keep up with everything all of you are up to. I wrote s big long post a few hours ago but my phone ate it. So making this short....I'm back in CRazy Town again and circling the drain.
In the midst of all these scans and tests I decided to ride my bike again.. I there my leg over it and pulled something in my hip .. There was a sharp pain and then a lot of discomfort..went to my internet who said it seemed like pirifiemis muscle issues and sent me to PT.
So since all blood wrk etc came back normal... I have been so worried .i called my mo and asked for a test . My mo is out til mon but her nurse who is very nice knew exactly why I was worried... Bone mets.. She told me that most people who present with that however have constant pain where they just can't get relief no matter what position they're in... I'm so crazy right now I'm not sure what I feel... Just panicked hysterical fear . So forgive me for being away... But between work and taking off my clothes for Radom guys in white coats I' m not in a good place mentally.... So far all the other tests / scans I've had are fine...so going for X-ray of hip... Lumbar area ...tomorrow...no mri right now as too many false positives...right now looking for baseline injuries.....also I have had trouble in this area since I was a teenager. Arrrrrrg
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The cleaning lady who comes in when I am laid up is very thorough but with 7 humans, 2 cats and a dog the surface cleaning takes precedence. She cleans my oven and stove top which I rarely do. She mops and vacuums the hardwood floors and does an amazing job on the bathroom tile. My house needs much more but my life is so complicated and I don't have someone come in regularly.
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I am fortunate to have a house cleaner who comes once every two weeks. When the kids were babies, she came weekly. I have had Kelly for 17 years. She spends 5-6 hours here and does my floors on her hands and knees. She dusts the blinds and baseboards. The only windows she does are the french doors and behind the kitchen sink. I still have to keep things up (the kids do cleaning too) and do deep cleans. I don't know what I would do without her. By the time I am not able to clean this house, I hope to have down sized. But right now, I'm happy to have all of my kids home.
We have a family trip to Zion and Bryce National Parks planned for the end of this month. Trying to squeeze it in between the end of band camp and the start of school. We'll be gone about 8-9 days.
I have a question. Our 18 year old son (the one with the depression issues) has told me more than once that he would prefer to stay home. He likes his alone time and says his youngest brother drives him nuts. My DH told him that it's a family vacation and he is going with us. If we went on a cruise, our son was interested in going with us. Last night he told me he would like to see the national parks, but that he doesn't want to spend that amount of time with his youngest brother. Because I'm not able to hike as far as normal humans, I thought maybe my oldest could stick with me. When the others continue on the hike, we would be together... hiking, returning to the hotel, whatever. But he has approached me on two separate occasions about his staying home. Surprisingly, he has been very mature when making his request. (I think his girlfriend gave him some pointers.) Anyway... What is your advice? What do you think I should take into consideration? BTW, I think my DH is very much against our son staying home alone.
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Prayers!
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sula good to see you but sorry you messed up your hip, hope it feels better and not her too nasty
Poppy, not a mom so not sure what to suggest
Got my handicap plates, goodie so I am officially a basket case, did some bike in the gym just to get moving
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Poppy, if he is suffering from depression, I'm not sure if I would want him home alone either, at least not for any length of time....sounds good that you and he could do things together (without his little brother).....you could always use the excuse that your not capable of hiking....I always say "remember no matter how far I go, I have to come back".....that usually works.........
Also, if the girlfriend isn't allowed to go along on the vacation, maybe she is influencing him to hang home?...........just. thought..........would it be possible for her to go with you all.......do you know her well enough, and has he been seeing her for a long time?......
As a mother of 6, all well past any advice on vacations or relationships it's just a suggestion............hope you find a solution, and good luck if you don't.......0 -
Hi Poppy, Your question is a tough one, for sure. I can see potential problems both ways and have no clue what I would do in a similar situation. Wishing you wisdom and luck.
Cleaning ladies? I'm so fortune to have a jewel every week. She changes sheets, does some laundry, waters the indoor plants, and just plain keeps the house clean. Don't know what we would do without her and I know I'm spoiled rotten.
Sula, Sure hope all your pain dissolve quickly. I so understand the fears.
I hope you all find some joy in this day. Jan
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On the cleaning thing........many of my friends get their ladies every other week........but again it's just surface cleaning..........
Having someone doing the floors (on her knees), and also baseboards is a big help...........I guess it all depends on how much they do........sometimes it's the "big" cleaning that gets us down.....harder to see, but "oh boy" when you do it's like...............OMG.........I wonder why I'm sneezing and coughing.....LOL
If I sat down on a Friday to clean anything close to the floor........I would have to use my "I'VE FALLEN AND I CAN'T GET UP GADGET' , so someone could come pick me back up...........LOL............
Hey I'm 81, with bad knees, arthritis , and a bad attitude......haha........from the waist up I'm great......all I need is a new bottom 1/2.,.................hugs ladies........
One time I moved my bed. (almost killed myself)....lol........and I thought.......Hmm if I had a tomato plant right now, I would have a great crop in about a month.........and I am not kidding........I can't do crap up high (kids took my ladder on purpose).......and I can't do things down low.(becaue when I bend sidewards I get dizzy), well dizzied then I already am..........and forget the knee stuff.........out of the question........oh and anything sitting on the floor................0 -
Proud,
thanks so much..I feel terrible being absent for so long and now coming back to crazy town with a problem but I have had an unending stream of dr appts, tests, scans etc the last couple of months and another surgery coming up soon..going to UCSF to meet the surgeon next week. I had a scan two weeks ago to check thyroid for anything (MOs idea) ..since radiation in that area as an infant started this whole mess..I was terrified for a week before and a week after before I got the results..felt like someone was throttling me and was sure there was something there..luckily it was all clear and all the symptoms went away as soon as I heard that...this back/butt thing is making my crazy and now everything hurts because I'm worrying about it...that's how I roll. sigh.
Poppy,
I agree with those who say not to leave him on his own while you guys go off. Ducky seems to have a total handle on it as she has had plenty of experience.
Ducky,
glad to see you are in one piece and riding in a big ol' MB to boot. How are all the kids and grands? Like the cleaning stories. Our housekeeper has been on vacation for a month, coming back today and very glad about that.
Grace,
so sorry to hear your news. I hope you get your treatment plan soon. Thinking of you and sending good thoughts.
Rainn,'
your son sounds like he's quite the businessman..sorry about your sons friend..hope they can help him.
Octo, Tom, everybody else....
there's a lot to catch up and read..so I guess I have something to do while climbing the walls.
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yeah, some things are just worth it
OK, small boasting, one of the Olympic gymnastics team is from the Next town! The one with the expressive face!
Think we got good air here, and solid schools
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Sula, We were cross posting. Sorry you have been driven to Crazy Town. It's much better when we chose to drop in, as opposed to being thrown in the backseat and driven here. Hope you get some answers soon. I have an issue with my right hip. I've had it off and on since my teens. A tendon slips or pops along the bone. It is quiet painful, sometimes just achy. It's a common injury with females... especially active women due to the stress put on our hips. Maybe you have something similar? Much, much better than mets. ((Hugs))
Just to clarify, my son is not currently depressed. But he did go through hell after my diagnosis. Also, his girlfriend will be out of town when we are. I think she is more mature in her way of communicating.... a skill many males lack. :-) I talked to my DH again and he is set against leaving Michael home alone. He wants a family vacation. He also pointed out that our youngest son, Alex, is teased way too much by his older brothers. So it isn't completely his fault that he gets upset with his brothers.
Iris, Many times I wish I had handicap plates. I'm glad you have them so you have the option to park closer when you need to do so. Cool that one of the Olympians is from your area.
Ducky, Love you. Thanks for your advice and wisdom. I can't get down on my hands and knees very well since I tore the cartilage in the left one two years ago. With these boys around, my house stays clean for about 15 minutes. LOL
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Hi crazies--
Iris, you are a total inspiration just for getting to the gym in this weather. Glad you're getting some help, but your determination is amazing.
Sula, welcome back, but I'm sorry it's for such a crazy making reason. It stinks that you can't get away from the white coats and tests.
Poppy, I somewhat agree with your DH that your son should not be left alone. But he's also old enough that once on vacation, he should have to do everything in lockstep. Maybe he goes his own way in the mornings and everyone meets up at lunch? Having grown up in a large family myself, I remember that feeling of wanting to get away.
Thanks to those of you who sent good thoughts to my DS's friend. He is still in the ICU, nearly completely paralyzed, and not able to breathe on his own. But there is, surprisingly, good news, in that everyone feels he will recover. It is going to take a while, and he'll have to learn to walk, speak, and even swallow again. But his dad says that the MDs all feel he will get back to where he was with no lasting effects. Terrifying and a long haul ahead of him, however.
Cleaning ladies? I wish! Though I have taught the kid to do a decent job on the bathroom.
Gearing up to pickle some jalapeños this weekend. I planted two plants, and two other hot pepper plants. It turns out that I am a successful gardener where hot peppers are concerned, and there are 30 ripe or nearly ripe jalapeños, which is more than even my DH, who loves hot food, can possibly eat at one time. So I have looked up recipes for preserving them and am trying not to get too freaked out by the directions that say to wear rubber gloves and eye protection when dealing with very hot peppers. I also planted a scotch bonnet pepper plant, which is much spicier by a large order of magnitude. I cooked one the other night, and it was fiery. It took my hand a couple of days to stop burning, so I will in fact wear rubber gloves from now on.
Love to all, including those who are more quiet than noisy, and Beppy, thinking of you always.
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