Between the Devil ( the red one) and the deep blue sea
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Marybe, my take is that maybe those are necrotic lumps left. I'd rather have a large dead tumour, than a small lively aggressive one. Let us know if your Onc thinks the same thing! We're rooting for you from the sidelines, that's all we can do, you have to play this game the best you can, and I think you're a champion so far!!
I'll let you know when I get the cookies, can't wait!!! Now when I get a notice for the post office I won't think they're cutting off my gas or something...hehehehehhehe
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Heck, yes I mowed the grass.....I suppose I should consider myself fortunate that he will start the mower for me....I just can't with my arms since they don't seem to have a lot of strength and also there is a trick to it which I have not gotten the hang of. If I didn't mow the lawn, he never would. Remember Schultz on Hogan's Heroes? I know NUSZING.....well, my DH does NUSZING. He was diagnosed with COPD awhile back and that has a lot to do with it and I would sympathize with that if he had not completely brought it on himself from years of abusing his lungs, but the whole thing is he doesn't do a durn thing to help himself. He has doctor's appts and he will always cancel them. He sits all day....goes out to eat and sits in a booth or at the lunch counter....sits in front of the tv or more likely lies down on the futon, ...sits in front of the computer, sits and strums his ukuleles, but he does not get one bit of exercise. I told him he should walk the dogs, just to the corner, try riding his bike only if it is up and down the street, but instead , he doesn't do a single solitary thing....Oh, I take that back. He went to the post office and got boxes for me, but most likely only because he was tracking a ukulele he bought. He was diagnosed with osteoporosis several years ago, but would not take the foasmax and the GP said to at least take Vit D, and calcium, but he doesn't even do that. He is so thin he should be drinking Ensure, but he doesn't.....it just sits in the fridge. And I get fuming mad at him all the time.....which could be a good thing as it might bring my BP up. I used to complain and gripe about him ALL the time on the Older women thread, but when most of us left that one even though I still had plenty of gripes I did not gripe as much since there are a lot more important things going on. And I don't want to infest this thread with my complaints about him as I could write a novel.
Sandy, Go to the movie with a friend. I did not go with my, H any of the times I saw it....won't put the D in front of it....I think men like the movie, but it is definitely one that appeals to women. It seems to be showing more in "artsy" type theaters than the big one. H just pulled out to go to lunch and I noticed the tree limbs and branches he was going to take to some landfill a month ago are still in the truck bed. GRRRRRRRRRRRRRRRR. I cook, but he'd rather go out. Me, I am going to have a BLT since I got some nice tomatoes at the farmer's market. Ohio tomatoes can't be beat.
Dead lumps, eh Barbe? Sounds like the man I live with in which case, I would rather have an aggressive lively one, but we were talking tumors, weren't we? LOL.
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hehehehehehe
You are allowed to gripe on this thread, it is YOUR thread!!!!
I bet the lawnmowing got the BP up. I LOVE mowing a lawn but here it is done by maintenance. You'd think we'd have great lawns living on a golf course, but we don't!! Different maintenance teams...sigh. We get all the clover and dandelions that are pesticided off the course.
Yep, dead lumps. That's my story and I'm sticking to it!
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Marybe - Your catchy topic caught my eye and I've been following your story with hope! I wanted to share my experience with my dad and St IV lymphoma with you so you are encouraged. He had a 10cmx 14 cm abdominal mass (no typo with the size.) After 6 chemo cycles his tumor makers were drastically better. The CT showed a 8cm x 10 cm mass and we were disappointed. His MO was reassuring that it was necrotic. 3 months later he had a PET with no uptake in the mass! I'll be keeping my fingers crossed that you have similiar results!!!
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Well damn. A miracle would have been great. I understand your disappoint.
As for H; the D can also be read as Damn. Jes sayin'0 -
Hi Marybe, I will be anxiously looking for the cookies tomorrow!
Sorry your news was not as good as you hoped. Maybe they are Barbe's dead lumps.
Speaking of husbands and dead lumps; the new Meryl Streep/Tommy Lee Jones movie Hope Springs looks pretty good.
Sending a hug!
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((Marybe)) wishing the news was more to your liking but staying hopeful at shrinkage.
Our lawn is fried so no mowing here for a while. Only green is the random tufts of crabgrass.
We went to a Sat. matinee of "The Best Exotic Marigold Hotel" last week and both enjoyed it.
Cherries were yummy in choc chip cookies but using fresh cherries added moisture so had to bake them an extra minute otherwise they fell apart. I bet they would be great with a scoop of Cherry Garcia!
Good luck with onco tomorrow, keeping you in my prayers. ((hugs))
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I was the lawnmower in our family starting sometime in the 70s (about a year after we were married) - dh told me he "always did yardwork" I was left wondering when the "always" was going to start happening - I bought the lawnmowers myself over the next 30 odd years and did my own mowing, gardening, landscaping, pond maintenance, etc. only stopping when bc brought me to my knees for a while - dh passed away just six months after I finished my treatments and I had to move back home to Canada and now live in a high rise apartment and I have four plants on my balconey that are sorely neglected - I do miss the mowing and I miss my lawnmower - you're right there is a trick to starting them - each one is different and they can be a huge pain but the mowing part is oddly soothing.
Time to take the dog out for her third walk of the day.
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I posted on the chemo thread about your activity level on your tumors but now I see it was a CAT scan and not a PET. Dashed hopes and expectations are the worst of anything that has happened to me I think.
I will relate to you what now seems to me to be a ridiculous story but at the time was devastatating to me. I swore then I would never invest so much of myself in hope prior to results again-I couldn;t get thru it again I don't think.
After 6 TCH last summer and outstanding scan results both times and discussion of oligometastatic it was time for the follow up visits to the lung and liver doctors to discuss removing the tiny remains of what was a huge cancer burden months earlier. The liver guy said "OK-we will model this and discuss it futher but technically your tumors are now too small to be removed-but we will talk about it'. Then on the lung surgeon-who just looked at me and said "this is a total waste of my time to even speak to you. Ther is no way I could feel tumors that small during a surgery so removing anything is out of the question and out of the room she marched. I dissolved into tears and could not stop for 2 weeks. First time I cried since being told I have cancer. Literally could not stop crying. When I saw my doctor for the first time after I had seen the surgeons and sobbed green snotty tears into his beautiful white dress shirt while he patted me...
6 months earlier they told me I had maybe 2 months to live and 60% of my liver was gone and now I had tumors too tiny to even remove and I couldn;t be happy? What the hell was wrong with me? But I had so much hope that I would be cancer free and that was the plan and I am a planner and a goal setter and now I would have to rethink and oh my god I was going to be in chemo for the rest of my life and oh god please make me more grateful people are dying every day and these ladies are so brave and so much more graceful than me and how can I face people???? You know that whole fast foward tape that starts to spin in your head and you can;t shut it down.
So yes I get why you can't be happy with your results. Stable is great and regression is even better but you sure can mourn for better results.
You are the uber-hero to me-most if us-you can do no wrong you little grass cutting fool you!!! WE will be glad for you while your emotions catch up to us.
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Marybe - I am glad to hear that there is some good news but sorry that you did not get the results that you were hoping for. It is hard to be excited when your expectations are not met. I have had regression up until my last scan which reported stable - kind of a let down when you are used to shrinkage. I know there are many here that would love to have a dance with stable boy and I do feel a ungrateful. Maybe I am just being a bit shy on meeting someone new - once I get to know him better I will welcome his presence.
I used to like mowing the lawn - but DH now has a riding mower (and we have a very large area to cut) so I haven't done it for a couple of years. Found that it was great for exercise and I would rather be outside in the sunshine rather than cleaning toilets.
I am with Barbe in her thinking of dead lumps. I hope that you feel a bit better after talking with your onc today.
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Can't wait to hear from you today, Marybe!!!! When is your appointment?
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Marybe, I'm with Barbe in the dead-lumps vote. I hope your onc is with us!
My first scan after met dx there was slight regression, but every one after that shows "stable". I was really upset at the first stable scan and the onc kept reassuring me that stable was good, that it was something we wanted to see. Eventually I accepted it because I figure he's an onc, if he's happy I'm happy.
Leah
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My cookies have arrived and have been thoroughly sampled (even the box smelled good!). Thank you very much. Now if only you could send sauerkraut balls through the mail, then my culinary life would be perfect!
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I forgot about asking about dead tumors. I need to always have a list. lst when I arrived one of the nurses came up to me and said I probably should not say anything to you, but I looked at your scan report and it was good and I asked her you think so? I saw it and I was disappointed and she asked Why? The tumors shrunk. And I said, but not that much do you think? What like a cemitmeter and she said But that is quite a bit. So then I saw the onco and he came in and as always starts out with How are you? I said I am getting wavy hair like you. I was telling him about the sore throat....he said my tongue in starting to coat and also I showed him where I have little canker sores all over so he thinks it is thrush and he said if the nystatin doesn't do the trick, they can give me a RX for difluken. So then he pulls up my reports and we got to the nitty gritty.....he says well it is working and that he thought it a significant improvement and I said I was disappointed and had hopes it would be more....enough so I could go for chemoembolization which he said is a hard procedure and normally only really recommended for someone with tumors only in the liver and he proceeded to tell me about a patient who went to John Hopkins and she may have been OK if she had also been under the care of a med onc there, but she was only being treated by the rad/onco and she had the procedure and went into immediate liver failure. So I asked And she died? and he said No, she did not die, but now she has permanant liver failure. He said it basically fries that section of the liver they work on and the hope is the liver will regenerate. I have tumors in more than one sectin and he said you just can't go around frying the liver in different areas. So he said he thought I had probably already seen the report and that I was probably calling up an hour after the test for the results and I said No, actually I waited til the next day and got the written report. He explained to me that the tumors are a sphere and that when you take the dimensions and calculate the amount they shrunk it is around ....and at this point he was doing some calculating in his head going three, four and then said it's 40 some percent, almost half and he was making a circle with his fingers and then made it smaller. He said the good part of all this is that the Adriamycin is working....that this time there is an actual corelation with the numbers and the shrinkage.....also added that it is just too bad, it is damaging my heart and wanted to know when my echo is. Told him the 28th and he said he thought it was a month and I told him she said a month, but she didn't have any appts til the end of Aug, but I was sure I could get in for an echo sooner so he suggested next week and that is what I am going to do. The next treatment will be doxil which he says is Adriamycin.....this I don't get and can't recall what he said...something about how it is delivered in fat cells or something like that....reduces chance of heart damage, but main expected problem is hand foot syndrome.....I reminded him that goes along with Xeloda also and I did NOT get it. He said that's true and I said I am special, Dr.C and he said he knows that. So next week I will get another treatment, but we won't do another after that IF the EF has dropped. Right now I am tolerating 2 coreg per day.....BP was normal for me when they took it.
I feel much better after seeing him and hearing his explanation about percentage of shrinkage. I also told him I am going to Euorope and he wanted to know where and who was going and I told him, my friend Cyndee who is doing a 10 K in Dresden and that I will fly with my friend Lee and we will go to my cousins in Germany, then Switzerland to visit my former employers and the friends I stayed in touch with and I am going to Brugges because it is on my bucket list and we will fly back home from Paris. It will be a two week trip and I am excited. We will just have to do a treatment the day before I go and then the day after I get back.
Thanks to you who shared your stories of disappointments with me.
So that is all I know. Next week we will do tumor markers again and hopefully the ehco will be good.
And now I must go to bed.....tomorrow is a 7 AM work day. Wed. I have a 7:45 appt with the podiatrist....want my feet to be in shape for a trip so need new orthodics and want my callouses cut off. Maybe I will start walking the dogs up to the corner and back since I know there will be a lot of walking.
Good night all. Love, Marybe
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Marybe - thanks for checking in and letting us know about your onc appointment - sounds good to me and I am glad you're somewhat relieved.
When is the trip to Europe? Sounds like you're going to have a great time - I cannot believe your energy level - I want some of it!
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Marybe it does sound better which is good and u had a great visit with u'r Dr. And it's good to get the echo out of the way anyway it has to be done so get it over with. And I bet it comes out good too. Have sweet dreams.
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Sandy, We are flying to Frankfurt on Oct.17 and returning on Nov. 1. I am using my sky miles for the ticket. It's been over a year since I got my passport renewed and I am finally going to use it....am worried about edema and blood clots from flying, but not enough that I won't give it my best effort. And guess what.....the H that I complain about all the time told me tonight he is going to give me some money to help with the trip.....makes mowing the grass seem not so bad. Actually probably good training for pulling my suitcase around.....which by the way is going to be a small one as I am not taking a lot of clothes, but I do need to think of gifts that are "made in America' to take to people I am visiting....a tough order these days.
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Well, I think that doctor appointment sounds quite positive. Especially since the nurse, who didn't have to say anything (wasn't supposed to really), made a point to comment that she thought things were good.
Europe will be great! The anticipation/planning is fun too. Let me know if you find any small 'made in America' gifts that are actually made in America.
I have eaten an embarassingly large number of cookies today.......
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Finding made in America products is easier than you might think:
look for local league of artisan shops for hand-made crafts, jewely and pottery
I've been to this Pewter shop in VT and they have very nice things, reasonably priced:
http://www.danforthpewter.com/
Clothing items:
http://www.usab2c.com/category/american_made_hats_madeinusa
http://www.americanmadesurvival.com/ammasc.html
There's a bit of resurgence and focus on American-made products, thanks to a news series by Diane Sawyer on ABC News.
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Marybe - glad that the mowing has paid off
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Yay Marybe! So glad the doc reinforced the 'good' results.....and even happier to hear that you have booked your ticket for Europe.
Still waiting for the cookies but I guess they won't be too far away............I'll bet the hold up is customs......lol......they'll have to check to make sure they only contain the normal cooking ingredients and nothing more......lol.
Love n hugs. Chrissy
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Happy to hear what you onc had to say, Marybe. Makes sense about the sphere concept, I guess. So a 40% drop IS signifant in my world. I thought you were already getting Adriamyacin??? Now we wait to hear what the EF shows. Crossing fingers, toes and eyes!!!
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Barbe, I do get Adriamycin....have been getting it since Dec. 7, every week except for that week break I had to take til I talked to the cardiologist. If the EF goes down more, I have to go off it.....have already way exceeded the maximum life time dose, but my onco does not seem to think that pertains to me since I am getting a low dose weekly. I actually think he is doing an experiment with me and I don't get so long as we are keeping a close watch on my heart and the cancer keeps shrinking. But when I asked him about the doxil, he said it is Adriamycin delivered in a different way....I don't think it is and am going to google it and research what it has to say about it. Maybe he just told me that since he knows I won't worry as much if I know I am getting something that works....he knows I am a worry wart. I think it is Glenna who is on it and will check with her to see how she is doing.
Chrissy, I hope they don't take forever....I just know how long it took for some audio books I sent....but maybe I sent those book rate...that was why I was so glad you took those other ones for me when you were here..not to mention all you saved me on postage. Anyway, I just hope the cookies are not stale and broken....or eaten by customs employees!!
Luv, I will check out those sites. I know one guy wants peanut butter. I suppose I could always pick up whiskey in the duty free shop.
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Good news, Marybe!
May I suggest
for handmade goods. It is international, but you can shop by country. It is like an online shopping mall. There are all kinds of goodies~edibles, clothes, knic-knacs, jewelry etc...
Each artisan has their own shop. My shop is:
http://www.tinkertown.etsy.comjust so you know it is legit..not because I want you to shop in my store. It's probably too expensive anyhow. I metalsmith as a hobby. I'm not metalsmithing at the moment because of cording in my arm and because I am working full time. It is either full time work or metalsmithing. My arm cant do both.
BTW: My friend likes whiskey. I got her "whiskey stones". You freeze them and then put them in your whiskey. They are made of soapstone, so they dont melt. pretty cool. She said she liked them.
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C'mon MaryBe you gotta be hapy about 40%. Like I said my guy says size isn't always the significant factor (guys have been saying that since time began haven't they?). The fact that the shrinking is matching the TMs. This all sounds great. Glad they got you a sooner appt for the Ef test also. Do you do Echo or Muga?
Your trip sounds great and good thing you started your training with the lawn mowing!! You really do need to start doing some walking-maybe on the days you aren;t working. You want to get the most out of your trip and not miss any little nooks and crannies so get you some great walking shoes and start practcing. Problem is how brutal hot it has been here in Cinti. I am doing my walks late at night-like 11pm. Lots of us ghouls out there then and people still sitting on their porches.
As far as the H and the money-get it now and bank it while the idea is in his head. Tell him you need to get some clothes or something...
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Marybe - 40% is terrific in my books. May there be many many more good things to come your way! A trip to Europe sounds absolutely wonderful.
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I have a friend who is on the etsy site....she does wonderful needlepoint. Oh for sure, I am happy LL....I have been in a very good mood today. No worry about H bailing out on the money....if there is one thing he is, it is generous....but money can't buy me love. I would be so much happier if he would do the dishes or something....but money for the trip, that is good...real good.
I know all about the walking. When my knee first acted up (the one that is artificial now) it was on a trip to Europe...the bus rides, the trips up and down the steps at the post office.(I mailed all my souvenirs home and a lot of the chocolate I bought) and the walking in general did my knee in....woke up the last day of the trip and was unable to walk. I was just glad it was at the end of the trip. When I came back home, they told me my knee was shot....no cartilage left and I had worn a hole in the bone. The pain and the crackling (cresapis I think it is called) had been going on for some time and I got by with cortisone shots, but after all that overuse it was time for the knee replacement and I did it the next Spring.
The one town we are going to in Switzerland, Solothurn, is where I worked for three years and it is just a wonderful place and I am so excited about going there and showing my friends around. My one former boss has been dealing with pancreatic cancer....he had the surgery and chemo two years ago and was doing fine, but then earlier this year it showed up in his liver and he is once again doing chemo but he said he was tolerating it. He's going to be having scans this month also and I am praying he gets good results. The other boss had esophageal cancer and had surgery 10 yrs ago and is still doing fine. I am looking forward to meeting with them for dinner while I am there.
Well, I have to go feed my friend's cats...she is one of the two going on the trip. Thanks for all your encouragement. I am going to add 1/2 of the lisinopril tonight and see how I tolerate that. I will post the details of our trip once we get it figured out....We fly home from Paris cuz it's the only direct flight to and from Cincy, but we are flying into Frankfurt since I am visiting my cousins who live there to start the trip.
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Marybe...I am so happy for you! Keep making plans!!! You rock!
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I am so excited for you Marybe!!!!!! We will live vicariously, through you, on your trip.
Hugs Ginger
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hey Marybe, 40% rocks! So does Europe! For gift ideas, perhaps Ohio has a website like our "Something Special From Wisconsin" http://www.somethingspecialwi.com/
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