The Hermit Club
Comments
-
Still doing housework...yuck and double yuck....
Better day today, ....no tears...woo hoo, a bit anxious over surgery. Part of it is worrying about getting there and all....DH is so good about being on time...
Cami, I have not heard from Blondie...I just like to say hi to her, in case she is lurking (as she describes it) still gonna try get fritz to wear his costume.....0 -
Lori- I know you are preparing for your surgery tomorrow and are nervous. Have I shared this one before? I am not a particularly religious person, but believe prayer makes a difference. My prayers both times were to bless the surgeon, OR staff, recovery room nurse, etc. that they would take very good care of me during my procedure. I am not a surgery oriented person and faced two very major things in a short period of time, and was very afraid both times. It gave me comfort. I will be saying a prayer for you as well today for a successful surgery and quick recovery. We will be here for you when you are ready to touch base with us.
Cami- I remember a post from Blondie a couple weeks ago, but nothing since. Hi to Blondie and everyone else out their lurking and needing a bit of hermit love!
Off to the med onc this morning. Got my list of questions for the visit too. Will let you know how it goes.0 -
jazzygirl, part of me wishes I could stay in Utah idefinately, the stars at night are spectacular, and seem to twinkly more brightly, and the air is so fresh. It has been very good for me in all the ways that you mentioned. I feel washed clean, and more capable, than I have in a long time. Lori, I promise you that I will be holding you in my thoughts tomorrow, as much as I possibly can but certainly a dedicated prayer for you, as soon as my knees hit the floor in the a.m. I am in the lobby of the red cliffs lodge,using their guest computer, and you know I check here first, even before email, cause I love us all so. little rainy, but I am in love with the clouds too! hope everyone has at least one special moment in the day they walk through. Nevada again for two days, and then sweet home! n pillows! cooking, of which I have done none! neighbors, and whole afternoons of bco. and Herceptin on the fifth. ok, all. love you and miss you, and see you soon.... : )0 -
Hi Hermits....
Well got the news this morning that my surgery has been canceled....my platelets are 98 which isn't horrible, but not not safe for surgery. The wbc is 2.2....lower than last week. The Doc wants me to come in Monday for more blood work....I am very dissapointed, but it is what it is...
I don't know what to make of the continuing decrease in platelets and wbc, especially because I had an immune booster shot with my vaccination two weeks ago. I know it can take months for the body to recover from chemo, but these levels are worse than when I had chemo......
Thanks Kath for the words of comfort.....u r sweet as usual......
One good thing, I can stop with the damn housework.....
0 -
lori think of us as in hour pocket, there when you need to know people who understand are with you.....xxxx0 -
Lily, love your imagery of us all in Lori's pocket. Glad to be together.
Lori, hugs and hopes for you.
Kath, amazing trip! sounds like gorgeous country. I've never spent much time west. You are soaking it in... so glad.
hugs to all.0 -
Kathyec- there is something magical and healing about the desert. It is why I moved out here years ago, a place I came to heal from some family losses, but find it is a place I can recover from things from better than the crowded spaces I lived before. Being near the ocean can do that for me too. Utah is really good for you and glad you are taking this time to be in a space that lifts you up. I do believe in the power of place.
So the visit with the MO went well today. We talked about many things but the long and short of it is I get to go on an "armidex vacation" now for the next month to six weeks to see if it helps my foot issues. Then we will restart it again and if things are bad again, he is changing me to Aromosin. He said they start most folks on Arimidex to start, but usually 40% of his patients do have to switch to one of the other drugs. I will see him again in late Dec for a follow up on things and then he will decide if we make the change at that time. I like my MO a lot, we have a good doctor patient rapport (even after just a few visits!)0 -
Oh Lori I'm sorry u have to still wait, but those platelets can cause so much trouble and take longer to get them up. Please be patient and let the Drs. do their stuff.
Kath u sound so peaceful Oh I bet u could stay longer, and I agree with Jazzy there is a quietness that's so peaceful with the desert, Well I wouldn't want to be lost in one like in the movies, but it is different.
Jazzy I'm glad u'r app't went well---good to rest from the meds too.
OK goy up to pee and just wanted to check in.
0 -
WS its your surgery soon isnt it? How are you doing?
Lori take care........0 -
good Morning..
Cloudy rainy today....
Jazzy-my surgery was cancelled due to platelets being too low. I am told the Dr. "is not concerned" but wants to monitor levels. My next appt is in two weeks...
Lilly- such sweet words, and these come during a time that is hard for you....
Teka-sounds yummy and cozy.....but how do u get the hull off of them?
Take Care......0 -
Lori- sorry I missed that earlier post about your surgery being cancelled. It takes so much to be ready physically and emotionally for the procedures. Not sure what to say about the platelets, maybe you could create a new post about your platelets and see if anyone responds? I bet there may be others who have experienced that here and maybe someone can share their experience with you? I am sorry about all that is going on here. Big hug to you today.
Teka- pumpkin seeds, yum! I am making a warm pumpkin and spinach salad to bring for Thanksgiving with my friends.
Cami- hope you are doing well today.
Having my roof replaced today. So far they did not know we are putting in a skylight (ugh) and a loose light cover in the bathroom fell and shattered. The term "the sky is falling" has great meaning here today. I had some hail damage from a storm and insurance will pay for much of it, skylight in the guest bathroom is an extra I have wanted for a long time.0 -
0 -
Hey guys. Jazzy u've got a lot going on at u'r house.
Teka my sister did all the seeds for years and had plenty to give us some. Then her kids grew up-boy did she stop.
We're supposed to get some big storms here, I hope they miss us, it can't just rain--it has to storm UGH0 -
So in the middle of the roof replacement, it starts raining and HAILING! I am replacing the roof due to hail damage. It is small, but seriously folks? Hail?0 -
jazzy- sounds like once everything is done, it will be so nice...I love sky lights. DH said we can do stuff to this hours....we were going to put in patio doors/patio, but would be a huge cost cuz of the house being a brick like exterior...so now you gave me the idea of a sky window...What a bummer that it is raining and hailing during it all....
Teka-I never knew that there are types of pumkins that grow hulless seeds...healthy snack.....sounds good.....
Cami-r u feeling better these days?
DH is sick....stomach/head ache...and he's leaving for his hunting trip soon....up/down weather temps don't help. I might go visit my sister, who is five hours from me...she said I could get a sedative for fritz, so he won't get so undone when traveling. I wonder if that would be too hard on him? Watching the world series tonight.....never watched so much baseball until I met DH. Its ok, I appreciate baseball and the skill involved....its much better to watch on t.v verses going to a game....0 -
Lori- sorry to hear DH is sick. Maybe a visit with your sister would be good. I know cats have a tough time in the car. Anyone who could check in on him for a few days while you are away? One of my friends is getting a ragdoll kitten in early December. Kittens are born and will be ready to go to new homes by then.
Roof is done, we could not do the square skylight like we hoped as it would just not work in the small space I wanted it. So we opted out of that plan for today, and I am going to look into doing a solar tube in the space (sort of what I had in mind to start, but this company does not do that work). I am going to look to a company that specializes in that to do that next spring. Too late to do any more roof type things now. Winter is clearly coming. They are forecasting possible snow tomorrow for Halloween!0 -
Jazzy I'm glad u got thru the storm and roof is done. How do u get some snow in NM it's desert land, I mean I never knew it got that cold. LOL
Lori I'm sorry about u'r DH, but hope he feels better quickly. That trip sounds great for u, but I know my cat hates traveling ever, the dog run to the car and always wants to go, but Katey stays way away, she doesn't even like to go outside. So.......
Hi Teka0 -
Cami- everyone thinks NM is like AZ, hot or at least mild. It is high desert here, meaning we are at 5000 plus altitude so we do get the seasons like other places. Most of the snow falls in the mountains though. When it does come to the valleys, due to the dryness, it sublimates and is usually gone quickly. Long story short, rarely does one use a shovel here. Rainy season is the summer time with monsoons. We only get about 8 inches a year and got 3/4 of our moisture in July with all those big storms. Everything you wanted to know about NM climate but were afraid to ask!0 -
That does it. I'm moving to New Mexico. We have gotten 13" of rain in ONE day in the summer. And that wasn't a hurricane either. And it's like that DAILY here. I hate it.
Jazzy, you are so lucky!0 -
Ah, sweet hermits. The grass is always greener. I would love, love Florida, simply because I adore the beach and have spent happy times there... from St. Augustine to Pensacola... Have never been to NM, but Jazzy's poetic descriptions make me want to try it a while. AR (sorry) has some pretty countryside, but the cloud comes from being among the lowest in the US in education, and among the highest in obesity and poor health. (But... among the first in charity/giving.) Sigh... only reason I'm here is DH wanted our girls to have roots--to remember their grandparents. Sorry to ramble.
Jazzy--thank you soooo much for the pm. I hope to try your advice tomorrow after work. Have to remember what to do first. Wonder if I can print? thanks, again!!0 -
Spookie- I grew up in CT, lived there about half my life, the rest of the time in TX and NM. I always felt drawn to the west, went to grad school in TX in the 80s and spent time all over the west, but a lot of time in NM. I then found myself working in NM on a project in the late 1980s. It was then I said I was going to move here some day and then made it happen in 1996. Sometimes I think I would like to live near the ocean again, but think I would also have a hard time leaving the desert. We are on opposite sides of the spectrum on precip- you can get more in a day than we get in an entire year!
Skittle- good luck with the exercises and PM me if you have questions. My feet have continued to feel a lot better since I learned these new things. I stopped my AIs, last night and look forward to seeing if the break helps. You may want to ask your MO if you can take a break too at some point. Some women on the Arimidex thread we are both on have said it seems to be better after you take your med holiday. Worth a try.
I have the most awesome Halloween costume to wear to my client site who is having a dress up at work day tomorrow. This place has really been no fun to work at the past year, but maybe tomorrow will be fun. We could use a little fun!0 -
Happy Halloween everyone. Hope hermits have a good day!
0 -
It is cold and snowed in the mountains here today! Doing the trick or treat thing tonight but no candy for me!0 -
I'm glad u all enjoyed u Halloween, now it's time to get ready for Bird-day everyone--It will b here befor u know it.. Well this time I will have to dress up---don't know what we're doing yet. But doing something.
It's still rainy here today but no snow yet but feels chilly enough. Who knows anymore.
Skittle Joey wanted me to tell u the book he's reading and I can't remember the name--it's something about away from Chicago well I remember the Chicago part anyway. He likes me to keep up with u on his school--Oh and he's fine now with math, the teacher moved him--it was a matter of sittin between 2 girls that he likes--oh already--we asked about a tutor, but the teacher knew the problem so now he's fine. I don't have to help him. So simple.0 -
ok so I need to vent...
THis morning I called the Onc nurse triage nurse line. My joint pain is so bad, that I am miserable in the morning and have a hard time moving....my hips hurt at night if I lay on one side too long. Anyway I could go on and on. I take tramadol, whichhelps take the edge off of it. I called to see if A. is it safe to take 150mg at one crack and B. Would I benefit from having an extended care tramadol so I wouldn't have to keep popping pills. The nurse sounds baffled about this and at one point says maybe this would be something my primary Doc should know.....implying that I should go to her instead. First of all, my primary would want me to come in,(another Dr.bill) ....My onc knows me, as well as his nurse, so why not address this? The nurse did say she would talk to my Onc about this and get back to me. I am annoyed by the conversation.
I am also annoyed that I never got an explaination exactly what is going on with my lab levels.(the reason my surgery was cancelled) I am just told that the Dr. knows and is not concerned. But when I ask the nurse if this is common, she says she can't answer that.....I am treated like I am a pest....but you know, I hardly ever call that triage line........I feel slighted and disregarded.....
When I read these posts, I discover how much some gals are in direct communication with their onc. Someone from another thread said her onc wants to know any ache or pain she has... I don't know if I am expecting too much?? Do some of you bypass your onc and go to your primary Doc? I feel like saying the hell with all of them and go to a different hosptital. I hate being treated like this, and this is the reason why my trust level with people is so low.So if I blow my top, I just make it worse to work with this Dr., thanks for letting me vent....0 -
Lori2020, i go to my primary care physician for everything else, even the side effects from treatments. even if he doesn't know that much about cancer, he is interested, and seems to care, and that is important to me. He has more compassion and is a better listener, and never rushes me, like i feel like my cancer drs and nurses do, and they always seem baffled anyway about "Special Effects (SE) anyway. i am home. my man was so good in planning this trip for us, it is like he knew that it would be so healing for both of us. in his truck, on the way home, he was wondering whether we should just go to his sisters beach house in ventura instead. but i have herceptin on the fifth, so i think that we shall finish unpacking from this one, and then go. glad to see home,tho. even the purple gray rug that i stand on to do dishes! And making a trout,rice, and salad for dinner was fun and easy! And now, this morning, my computer and a trip to the store, & puttering about. i have a whole bag of clay to play with, and tons of beads. I did go to a rock and mineral store in utah. ran by this wonderful woman Marion. Best. Prices. Ever! so now i have some smithing to do too, as christmas is right around the corner. i have lots of work to do on my art blog, cause as soon as i started it, my friend got really sick, and i was her end of life caregiver, so i never got back to it, and so it is old and really rough, but if anyone would like to see some of the things ive made or drawn, or whatever, pm me and i will send a link. that is where i will put pictures of utah too. i think that this might be the year, that i will try to make a small income from makiing things, instead of working at mcdonalds or something equally as horrible, like that. Love the frank&kittygirlcat! Lori. is that pain from arimidex? i forget. i had to stop. and now am on tamox, which scares the c out of meeee.0 -
This sweet girl that moved to the states from france asked us if we do the 'Big Chicken". it took us for ever to figure out that she was talking about turkey!0 -
Cami......is it called Away From Chicago.......0 -
Happy November hermits. Like Cami says, Halloween now done, turkey day on the horizon. That will be here before you know it.
Lori- one of the worst things about the healthcare system, especially when you have cancer or a bunch of things going on, is the fact they don't work as a team even though they should. It can cause you to not have the right balance of care, or to not get the attention you need. They all look at you through their own silos of expertise. But our body is not made of silos, but one very big integrated complex system!
I am almost a year post surgery and six months post rad treatment and at this point, I pretty much deal with my PCP and med onc on a regular basis. Others like the breast surgeon I see every six months (she still wants to be involved in my post follow up care). My PCP handles everything except for the gyn and breast/cancer issues. She is acutely aware that the process I have gone through has thrown me into other problems like high BP and borderline diabetes.
You are still going through active treatment though, and think your surgery is your reconstruction surgery, yes? So you need your team working closely together with you.
If your pain is that bad, I would suggest you to your PCP who to me, is your best advocate. She/he may be able to help you with some of the things you are stuck with and/or can help to evaluate your pain.
And yes, the med oncs and others involved in your care do like to know if you have bone pain, as that can be a concern for bone mets. I asked my med onc this week a question about that too, given the side effects of AIs that make your bones ache sometimes and/or joints hurt. He said "you will know it" with respect to whether a bone problem is one of concern and yes, if it is, they want to know. He said the bone mets don't land in the joint areas commonly.
Maybe take someone with you to your next apt and see if they can help to advocate for you. When you are not feeling good, it is hard to push to get your needs met, but you need to. You need relief as well as answers. Let us know how else we can help?0 -
Camille... If it's A Long Way From Chicago, it's about a "crazy" grandma who at first scares the "city kids" who live with her for the first time.... since it's during the Depression and they leave the city. Some of it is hilarious. If he likes it, Richard Peck, the author, has written a whole series around her. And others, too. Like The Teacher's Funeral and Fair Weather. Glad the math was solved. Kind of funny it was two girls.
Jazzy... I love your wisdom. I share the feeling others express about not having a great relationship with my MO. I mean he's great at the science end, but not so warm and fuzzy in the concern department. (I have a bone density scan in a couple of weeks, so we'll see what he says then.)
Hugs to each. Happy weekend.0
