New Want To Play A Word Game
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Wahine, both your DD's are lucky in that way. DS has a great job, bought a house, has such a loving heart. DIL does nothing, I mean nothing. She doesn't work, they have no kids, she wants him to also do the laundry and clean up on the few times she cooks. She does like to eat out a lot. She can't hold a job because she thinks she knows everything and doesn't realize that when someone starts out in a job, they are on the bottom rungs of a career ladder and she thinks lots of jobs and tasks are simply beneath her.
PS Wahine, you are usually the quick one.
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LOL, but you are quick tonight Maddy! Sad that your son has done so much, and she does nothing. I hope he is happy with her, at least. Wonder if something happened to her that stung her and left her being very defensive to others? I don't know, but its sad that she does not try to have a relationship with you. SHE is the one missing out!
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All UFO passengers please report to curveball's pocket ASAP, but please don't get too rowdy in there, or I will get a nasty headache on top of all the other fun I've been having the last week. I'm really feeling sorry for myself. I had a bad day yesterday and a restless night last night due to back pain and had to break into the prescription painkillers today to get some relief. OTC meds were just not doing the trick. Plus, I think I must have picked up a stomach bug in the ER last week. I will refrain from going into details, except to say that it hit tonight just as the back was feeling a bit better. I will be getting the scan results tomorrow and I have to admit I'm nervous, but I think that is just because I've been having all these other problems. Oh well, not much longer to wait now. I can't think of how to get from here to my word, so I will just tell you what it is: grunt.
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Curveball, if I had 3 wishes I could grant for you, they would be for (squeaky) clean scans, relief from all pain, and that you could snap your fingers and your home would be exactly as you want it to be. Will be in your pocket tomorrow.
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All aboard....looks like we have ALL the pockets filled up...ready to help support Curve today. And Curve, remember any and all rants are accepted here. It does help to vent, and you have had a lot going on. So sorry to hear that! My back is horrid too, and even just a sneeze in the am before it gets loosened up, hurts like heck. And getting sick like that, with a bad back....OUCH! Praying you have good results today! We may get a bit rowdy and a bit drunk, so please explain things to us afterwards, ok? (((Curve)))
Tenants son just called and the pipes are frozen in our condo. YIKES. My DH even went over to make sure the water was on and heat was on, since she was out of town (she is elderly and lives alone). We have a townhouse we rent out also, and that tenant is in FL, so we need to check that too. However, I will be at my DD's house while she gets the chemo port in, today. Since my parents have 4 appts tomorrow and my DH has 1 appt, plus we have someone that was going to do work at the townhouse tomorrow, I guess it would be worse if this had happened tomorrow instead of today. I would say "when it rains it pours" but that needs to be changed to "when its too cold it freezes".
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Yup, we are all there with you now, Curve. With all our antics, we might stamp the wrong impression on the doctors and nurses....hope not. We are TRYING to behave, and still praying for good news, Curve!!!
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omg - a four paragraph response and I screwed it up by hitting the wrong whatever. there are days when I hate computers, my darned word was TEMPS. there did it
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Darn it sounds like the post gremlin is back. Sorry Red....that sucks. To cheer you up, I brought you some roses with long stems.
Took all day for them to do the port for my DD1. I left my house at 10 and didn't get home till 6:30...and they are just a few minutes from the hospital. TIRED!!!!
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so relate, Red!
Can't wait to hear from Curve, my hearing aid wasn't turned up while in her pocket or we were just partying too much after good news?
It's been getting a little cooler here. Cool enough for a fire. I prefer wood fires but if an ember escapes, I would have to stomp it out.
Edited: I didn't post this right away and when I did, found out Wahine posted the last will have to come up with another post. Beautiful roses, by he way.
With the beginning of the new year, there are some musts I need to follow; to stay healthy, get sleep,exercise and eat right. Oops, forgot where I was going with this thought, better post before I lose or something sneaks in ahead of me.
Oh, yeah, Wahine, try to rest up when you can.
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O Maddy, Curve, CC, Kat. I want to cry. I haven't since this all started but tonight I feel the weight of the world on my shoulders. It was so hard not to tell my mom, but it would just hurt her so I'm holding off till I have my investigation over with.
Having that stupid post disappear was a way bigger disaster than it should have been. Sometimes, computers just STUMP me. I feel useless when I can't figure out what is now normal and basic technology.
OK enough feeling sorry for myself. I going to have a hot tub and go to bed.
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Red, my friend, my heart sank when I read your post on another thread, so I understand your disappointment with the post disappearing. I am so very sorry about what's going on, I don't understand how that could happen. I'm hoping there will be a big investigation and that all will be ok. This is such a wicked, horrible, disease, we need to find a cure immediately and stamp it out. Know I will be in your pocket for a while, or if that's inconvenient, will be sitting on your shoulder, whispering in your ear, offering you support. You, along with Wahine and Curve will be in my prayers and I'll be sending good thoughts to you throughout the day.
On a side note, thank you for starting the other thread. Makes me look for things during the day to be grateful for (oops, shouldn't end a sentence with a preposition, but oh well)
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Thanks Maddy. Appreciate the company in my pockets or on my shoulder. I'm just thankful that my current work schedule MATES well with my bc schedule, so that I can go away for a bit.
(ok, now I have a visual of 2 schedules mating. You think they'd have a little foreplay first?)
It's a little warmer in our neck of the woods today, about -6. This makes me happy too.
Have a nice day all.
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Whatever you were doing in my pockets was inaudible, and no bad impression was created on doctor or nurses. Unfortunately, I got bad news from the scan. The taxol did not work—existing mets in my bones, liver, lungs and some lymph nodes got bigger, and new mets were seen in lungs and bones. So, I had no taxol infusion yesterday, and now it's back to the drawing board to figure out what to do next. I have sent a request for a phone visit with my Seattle onc, Dr F, and also have an office visit with another doc down here for palliative care, to see if I can get better control of SE with my next treatment.
I'm also looking into getting some testing done on my old pathology slides to see if that can provide any guidance for future tx. I don't much like the hit-or-miss, try it and see if it works, that seems to be the best "standard of care" has to offer. But getting that testing done will take a while, so I think what I will probably do is try the next best chemo for a couple of months. That should be enough time to get the results back from the testing, and since my hair has already fallen out, I may as well try another before I get all excited about having it grow back. But I think I have pretty much made up my mind that the next thing I try after that (if it doesn't work either) will be one of the anti-hormonals I haven't done yet. Chemo makes me feel sick and tired all the time, and I don't want to press on in spite of the misery like I did last year, and end up in the hospital for a week. Dr W (local onc) says anti-hormonals are less likely to work than chemo, but they are also less debilitating, and so far I'm not real impressed with how chemo has worked. I also have another Zometa infusion scheduled the same day as I see the palliative care doc, and I hope when I get just the Z by itself it won't put me in the ER again. I will also ask Dr S (palliative care doctor) what to do to keep that from happening. If I learn nothing else, I will be able to refer to the testing to find out what clinical trials I might be eligible for.
I am feeling pretty pessimistic right now. My brother beat the odds bigtime with his cancer, living something like four times the median survival expectancy for someone with his dx, but it doesn't look like that's going to happen for me.
But not everything is bad news. The crawlspace crew has been here all morning putting the insulation back in my floor, and the person is coming to measure my kitchen for the countertop next Monday. The remodel is almost finished!
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Curve, glad we were quiet enough to keep the docs from hearing. Amazing really when you consider how much we drank in the waiting room alone. Then Kathy kept telling us jokes that had Maddy, CC and I rolling around laughing our fool heads off. We weren't very quiet to be truthful.
So very sorry to hear your most recent news. Dammit. I was hoping for so much better as were you, I'm sure. Curve, I have to ask sweetie, but you don't have to answer. Why do you have a palliative care doctor? I don't understand some of what you said but I'm going to research the stuff I didn't get. Mostly the chemo names because I'm not that far into the journey yet. Glad your brother beat the odds. If he did it maybe that's good for you too.
For heaven SAKES, when are they going to find a cure for this darn disease. One of my buddies at work has a wife who had terminal brain cancer. She didn't want the op since odds were high that she would be left without some of her faculties. So they talked it over and decided to go alternative medicine. He researched it all and designed her a program. 8 months later they went to the docs and her tumor was gone. Completely. He's offered to help me, but right now I think I'll stick with the docs. Maybe though, if things aren't great after this couple of months on the new chemo, you might consider something like that. It doesn't seem like the regular stuff is working for you and I am so sorry about that. It's just an idea. Not even sure I'm 'allowed' to suggest it.
Anyway, know that we are available at any time to jump in your pockets. We'll try to keep quiet, honest.
{{{{{{{{Curve}}}}}}}
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Oh Curve, I just got home after a horribly hectic day, and just read your post. I really do have tears falling, it really hit me hard. I wish I could just skate over to you and give you a nice, gentle, hug. I wonder what type of alternative medicine that Red's co-worker's wife used? I am so glad your remodel is almost finished, but really, my heart is breaking. (((((Curve)))))
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I'm going to spell it wrong but it was a combination of diet, gentle lymph exercises, lymph massage and layatril. His reasoning was that the lymph system is the body's way of cleaning up life's messes, so make that healthier, eat no grains or hormone stuffed foods, and then the layatril. He says it is natural but has a small tiny kernel of arsenic in it. Because it is natural, the cancer cells have no problems having it around. It snuggles in close, enters the cancer cell, then the outer membrane goes pop and the arsenic slowly kills the cell. Which can then can be cleared out of the body by the healthier lymph system.
That's what he told me, I did some research and there are others who claim success too, although there were others who debunked it.
He said when they got the final scan the docs were both amazed and angry. I guess they consider it one of their TASKS to help eliminate cancer.
{{{{Curve}}}}{{{{Kathy}}}}}
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@RedReading, I am going to see the palliative care doctor because I want to see if I can reduce the side effects of treatment. I had no symptoms from my mets and no noticeable side effects from the two AIs I tried that didn't work, so with chemo it feels like the treatment is mre disagreeable than the disease. I know that's not really true and if progression isn't controlled eventually the mets will cause symptoms, but it's hard to keep on going treatments that makes you feel worse than you did before starting. On the AI's I felt good enough to get out and walk at least sometimes, and to work in my garden, but after just two months of taxol I feel tired all the time, and especially now that it didn't work I feel pretty down and depressed, like I made myself miserable and lost my hair all for nothing. I lost most of the weight I had regained too, from that time I skipped dinner after the ER visit and getting sick the other night. Lots of people think palliative care is the same thing as hospice care
but it isn't. I'm not dying yet and there are more treatments to try, but I need to get control of the side effects or I won't be able to withstand the treatment, and if I discontinue the treatment the mets will get me sooner rather than later. Controlling symptoms and side effects is what a palliative care doctor does. I think the thing I really want to get rid of is the gas and bloating I always have with chemo. It sounds like a little thing, but it's so uncomfortable and makes me feel "not quite right" all the time. What I meant about last year is I kept on to the end of my chemo treatment even though my oncologist said he didn't know how much good I would get from the last few, and even though I felt really lousy and had a temperature that kept going up and up in spite of taking aspirin. I didn't want to go to urgent care because (as last week) usually they keep you sitting around for hours, do tests, decide you aren't all that sick, and send you home. I thought it would just be exhausting and I'd have nothing to show for it, but finally they and my mom convinced me to go in, and when I did I was admitted to the hospital and didn't get out for a week. It turned out I had pneumonitis from a reaction to one of my chemo drugs and my lungs were filling up with glop. They actually had to knock me out and put me on a ventilator over one night to get enough oxygen in my blood. So what I meant up above is that I would change to a different treatment before the one I'm on makes me so sick I need hospitalization.It is funny you mention alternative medicine, because medical marijuana came up on one of the threads in the Stage IV forum. Actually more than one thread...one is about a documentary on CNN that was done by Dr. Sanjay Gupta. I haven't seen it, but the reviews and comments I found when I googled it say he basically did a complete about-face and now is in favor of some medical uses of cannabis. The other one was a thread where someone was given a capsule containing some sort of medical cannabis extract and it was much stronger than she expected and gave her a big scare when she used it. Medical use of marijuana is legal in my state but that second thread sure gave me pause. I don't know how carefully the producers are monitored, or how sure you can be of the strength and uniformity between batches of what you are getting. The other thing is that pot was also legalized for recreational use here, but that law sets a blood THC limit above which you can be arrested for DUI and I remember from the campaign that some of the opponents of the initiative said medical cannabis users could very easily be over that limit all the time. So if I were to use pot medically, I'd probably have to give up driving, and that would be tough because I live by myself. I guess it would be worth going car-less if it works, though.
Be very very careful about alternative treatments! I wouldn't let the husband of some
friend of mine treat me unless he was some sort of doctor, whether
conventional or naturopathic. Laetrile is not only unproven, I think
it's illegal. It's one thing to combine standard treatments with herbs or vitamins & nutritional supplements to increase their effectiveness or relieve side effects, but something altogether different to start taking a substance with no proven benefit, administered by someone with no valid qualifications to do it.@wahine, you can't skate here to see me, unless you meant rollerblades. There is no ice here, just lots of rain rain rain.
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Thanks for explaining what you went through, Curve. I didn't realize all that, you are REALLY a trooper, as you don't complain, and that is a lot to deal with. Yes, I meant roller skate over to see you....just needed a word, lol. They are trying to pass someting that is derived from mariuana, but doesn't give you a high, mainly for children with seizures. But I wonder if something like this would work instead of the regular mariuana? Here is an exerpt...
MONTGOMERY, AL — A bill to allow cannabidiol, or CBD, medications derived from marijuana should be introduced soon to the Alabama legislature, with support from Republicans in both the House and Senate.
Authored by state Rep. Mike Ball, R-Madison, the bill is aimed at allowing parents of children with certain neurological and epileptic disorders to possess CBD -based medical marijuana.
“You can’t get high on it, and it has no street value,” Ball, a former state trooper, told the Huntsville Times last week. “Once the public understands what this is – and we’re making progress on that – I think we’ll be in pretty good shape.”
And another link explaining the CBD... http://www.chicagonow.com/chicago-medical-marijua...
But you are prolly aware of all of that. I sure didn't know about it till today!
I asked my dad about the big event he is going to at the State Capitol bldg in HI, and whether my mom would be able to sit with him. But no, since they are going to be in the legislative area, there are a limited number of seats. Guests have to sit up in the balcony. He was on the committee that picked the design, architect, etc., for the capitol bldg, but has never been in it! Although he was part of the first State Legislature after we became a state in 1959, they convened in Iolani Palace!
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OK Curve I just spent the last hour + researching laetrile. Don't touch that shite! I'm amazed someone would give that to a beloved spouse. But if not the laetrile, something worked because she's been cancer free for over 5 years now. Do you think it was all the lymph stuff they did.? The lymph are supposed to be our clean up crew. I had a beautician back in the day when it mattered to me, who did a lymph massage every time you got a facial. Actually put me to sleep several times. Maybe.....
So I went down to my freezer to pick what I wanted for dinner and realized something. Apparently, without realizing it I am in panic mode. I have many different MEATS in there. In fact, both of my freezers are full. This is a pretty accurate barometer of how I am doing. I buy food when I'm anxious. I fill pantries and freezers, both fridges! I don't even know I'm doing it until one day I open something and go 'holy crap' I have a ton of food. 'as God is my witness, I shall never go hungry again'. Lol I'm such a loser sometimes.
Night ladies.
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@RedReading, I doubt it was either the laetrile or the lymph massage that put your friend's cancer into remission, but I'm happy her tumor has gone away. I'm not going to say any more about that. Alternative treatments can be a touchy subject with people both pro and con and I for sure don't want to start a big brou-ha-ha and leave a bad taste in everyone's mouth.
@wahine, I have not done any research on medical marijuana. I think though, that CBD is the component that is thought to have anti-tumor activity. The problem is if the extracts containing CBD are only approved for treating seizure disorders, my onc probably could not get away with prescribing it for me off-label to treat my cancer even if she were inclined to do so, and I have no idea what her views are on the subject because I've never asked her. There is a marijuana derivative called marinol that's approved for treating nausea and loss of appetite, but that I think has the THC, not CBD component in it.
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Speaking of leaving a "taste" in everyone's mouth Curve, made me think of a nice latte. Hope that might leave a GOOD taste in everyone's mouth, lol. Yeah, so much controversary, and our state of AL has not approved medical marijuana. So far they are just trying to get the CBD approved for children's seizures. But it may be appropriate for other things, I have not studied it. Our state is trying to move slowly to get a "foot in the door", so to speak.
I have to hurry up and get dressed and pick up my grandkids at the Cancer Center this morning, so my DD and her DH can be there for the appt to fit that rads mask on her.
Hope you will have a nice day, all of you wonderful girls!
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Wow, you are so busy wahine. I hope that efforts to alter existing laws and allow medical use of marijuana are successful in many more states. There seems to be some real scientific evidence that cannabis may have anti-tumor effects, and I think its usefulness in relieving the side effects of chemotherapy are pretty well established. I found a youtube of the program CNN did last summer about a little girl with an extremely severe form of epilepsy who had been treated unsuccessfully with many standard drugs but got relief from a high-CBD strain of marijuana. There was another story about a little boy whose mom decided, after standard treatments made him dreadfully ill, to treat his leukemia with marijuana instead. He went into remission, but a doctor reported the case to authorities and the mother was essentially forced to return to chemo treatments for him. I hope in the future laws are changed so things like this don't happen. I am getting more and more curious about medical marijuana and I'm glad it's legal here so if I decide to I can try it without worrying about going to jail.
Hope you have a great day too.
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Hi Curve. I know what you mean about alternative medication stirring the pot. (pun intended) I always found that pot always did one of two things for me. I either fell asleep or got naked - either ruins a party.
The weather is finally warming up here. We're in the twenties now, and today will be up to the thirties. Just for today but Yay! Of course, we now have fog as things melt out and a 3 ft wide TRAIL of water rushing down our street. It will all freeze again overnight, so driving might be a bit dangerous tomorrow.
Getting ready for a visit from my mom today, so I'd better get back to cleaning up. She doesn't bring a white glove, but...
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@RedReading, I never used pot in my younger days. It was still illegal all over then and I was a goody-two-shoes and not that much interested in achieving an "altered state of consciousness". So I have no idea what effects other than the medicinal ones, it might have on me. I have friends coming today and they will be here soon. We're going to go for a ride in the country but I think I will stay strictly in the car. It's pouring down rain outside! I sure wish I could figure out how to get "back on the rails" physically. I don't know if it is the Zometa that has conked me out so thoroughly, or if it was that last dose of taxol, or if I caught something in the ER. I hope the palliative care doc can figure out what it is and help me get some more energy. Gotta go now, my friends have just arrived.
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Oh Curve, sorry your energy has left ya....guess you are moving more like a snail these days? Hoping also, that the palliative card dr can help you! Do you take Vit B12? I am a big advocate for it, and may have already ,mentioned it on this thread. If so, I'm sorry, but if not, I will tell you what I take, and it really helps to give me energy. In fact, in Vegas with some bc.org friends, I was the oldest...youngest was over 20 yrs younger, and I had more energy than they did. Anyway, learned this from our former vet, whose wife has MS...I get the sublingual Vit B12, and dissolve it under my tongue. Supposed to work better that way. I use betwn 2000-2500mg a day. Used to take 6kmg, but my numbers were so far off the chart, so I cut back. It is supposed to leave your body daily anyway, so I don't think there is a problem having too much. My doctors concur with me on that. If you are not taking it, maybe you can ask your dr about it? My parents levels were low and so their dr prescribed 500mg for them, and I asked if it would be ok for them to take at least 2kmg, and the dr said that would be fine. Hope you have a safe ride, with all that rain, and can enjoy their company!!
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Wahine, Curve, and Red, you are all such strong ladies, tough as nails. With all that you all have going on in your lives, how you manage to get thru each day is amazing!
Wahine, so that's the secret to your energy! Aha! Need to try that. I go to the MO I think next week, so need to make sure it doesn't interfere with the Tami. Have to be so careful these days, so many supplements available but I don't want them to mess with the Tami.
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Oh yes Maddy, I do hope you ask your MO about the Vit B12. And if the MO says ok, but says a small amount, ask if you can take at least 2k mg. When I went waaay down to around 1k or so, I could really tell the difference. If you get on the B12, do try to get the sublingual, it is harder to find, but works so much better. Pretty soon your neighbors might spot you running up and down the roads, or lanes! We also take lutein for our eye health. Our eye dr recommended it, and we just get it over counter, like Nature Made or something, we take either 10mg or 20mg a day. We started it after my DH got dx with a tear in his retina. Took it for 2-3 mo and when he went back to his retina dr, the retina had healed. He also said the lutein does real well, and then we had proof!
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Wahine, you sure it just wasn't time that cured him. Just asking.
My DD is and RPN, an herbologist, and a couple other designations. O the TALES I could tell about the things she wants me to take. I think this vacay will be good if only to get all the well meaning advice out of my head and decide what 'I' want to do.
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Red, it sounds like with all the talks you've had, you do need a break to figure out what's best for you. I can't imagine what you're going thru.
Wahine, I will ask about B12, seems my energy level is really low lately. We will see....
Sending ((hugs)) to Red, Wahine and Curves.
PS, do you prefer Red or RR?
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