Radiation recovery
Comments
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Thinking of you, Kate...
Josie, I am sorry you were feeling so tired...I know that feeling. My meds have not been working consistently most of the summer. I dropped 2 of them and with all the traveling didn't take them regularly. I can feel one or the other kicking in, and sometimes it's the downside. Your post just reminded me I didn't have coffee today -- I had a cardiology appointment (all is well). He wants me on the statins again but only 3 days a week. That I will try.
Gigi, Thanks for your understanding. Just when I think I'm "fine" something triggers those feelings of sadness...If I keep busy, I feel better...but there isn't much going on besides work. I do have a wonderful very short trip soon and I am excited about that. I think a change will help.0 -
Kate, thinking of you today as you go to see your doctor. Hope it goes well and the decisions you make are just what you need.
Joan, I have been abandoned by my siblings and have Dad with me this weekend. I spent the night stewing over the fact that now when he is so weak and vulnerable, they choose to jump ship. I decided this morning to take the weekend and do it my way. I am taking dad on a ride in the country and we will stay at our house in Lakes Country, Minnesota.. The leaves are beginning to turn, and the lakes are spectacular. I think his health will hold out, but if it doesn't I am prepared to deal with it. I want to give him as many beautiful moments as I can while we still have time together. He is teaching me a lot and I am cooking him good food and surrounding him with TLC. Win/win, right? Maybe you can do that too, when you take care of your granddaughter. Find a way to put your own spin on it. Find a mani pedi place that will take a grandma/granddaughter duo. Take her places you will both enjoy. Take some control. That is what I am doing, and it feels good!0 -
Kate, add me to your pocket team! I hope your doctor sees things just as you do, and likewise for the urologist and the imaging.
GiGiL, what great advice for Joan! Good luck with your father--hope you get gentle sunny days in Lakes Country. It sounds beautiful. Joan, what you're going through sounds like any kind of grieving, and the loss of the Disney trip is just piling it on. I hope you can find peace about it and have a nice time with your granddaughter, and take a good Disney trip with some of the little ones soon.
I just found out from my dermatologist's office that my skin cultures were NEGATIVE for bacteria. Now I'm more puzzled than ever. I had taken a week of Cephalexin before I got the culture, but the rash had spread. Now I'm on this much stronger antibiotic and I'm wondering whether it's going to help. The MA on the phone said to take the whole course of it anyway. To my great relief, so far it isn't bothering my tummy at all, so I will keep it up. But if the red spots aren't bacterial, and the raised rash isn't an immune response to the bacteria, then what is it??? Does that make it more likely than ever that it's purely a drug reaction to Tamoxifen? I had been thinking it was a drug reaction that had become bacterial due to my inevitable scratching. At least I'm feeling a little better. The Triamcinolone cream is working pretty well, definitely better than the oily gunk I had last week. I go back to the derm on 9/30. The mystery continues.
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Hi y'all
Joan - great advice from GiGil ...the let down...the changes...the empty house...and the daily grind of work and life. Find something to put on your calendar that brings a smile...make some fun surprise bags for the GKs:) plan a surprise date with hubby!
Kate - we are in your pockets trying to contain our giggles...it's TGIF and happy hour is near
. Hope you received good news and are confident in next steps:)
RunFree - luv a good mystery but really no answer:(crazy...glad you are feeling tester and your students aren't itching:) history is being made!
GiGil - you're dad is so fortunate...a weekend out at the lake house with a full moon and fall colors sounds enchanting and a wonderful memory! A win win yes:)
Josie - keep your coffee cup close! Sounds like your body needs its fix...yeah mom:)
SAB - is it pay day yet! Ha ha hope each day just confirms that you are in the right spot to thrive
Janis - keep us grounded hope you are doing well
Hubby skipped diabetes school:( he is on his own...so upset:(
waiting for appointment for PT for LE...got that 3rd boob needs to go away...beach tomorrow!
(((Hugs)))
Cindy0 -
Joan, hang in there him sounds like you need a hug.
Sorry don't have much advice.I have an 18 yr old that has decided to more or less live at BF house but not admit it to me since I don't approve.I feel ike an empty nester sometimes.Hopefully we will be closer as she grows up.
GIGIL good for you to take your father to the lake house.The fresh air will do him good.Enjoy!!0 -
Cindy sorry to hear your hubby has skipped his classes.I know that has to be frustrating.
Sounds like he needs a good swift kick in the rear.
I know that's not nice but men can be so stubborn.0 -
GiGi, What a lovely daughter you are! And Joan, maybe you can find an awesome "only Grandma would have ever thought of it!" activity for you are her. I'm hoping it will surprise delight the both of you!
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CHEMO HAS ENDED_YEAH!YEAH!YEAH, at least for 6 months. My doctor said ok when I told him I need a minimum of 6 months rest. I get CT scans next week, and I see the 2nd opinion urologist Sept. 30. My Mo really is against me having partial bladder removal surgery. If there is going to be any procedure to remove the tumor he wants me to have a transuretheral resection. That is what I had in April. I think it only requires an overnight hospital stay. I see my MO again Oct. 4 to find out the results of the CT scans, and to see what to do next.
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Good for you Kate.I hope all the scans turn out ok.
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Kate, that's so great about getting a long break from chemo!!! YOU DID IT!!! Donut shop here you come! Can you explain more about the resection? I'm confused over the MO wanting to do a surgery that you already had done in April. I bet you will feel light as a feather this weekend! Have you got anything fun planned?
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Thank you Josie and Runfree. Runfree the surgery was done in April to stop blood clotting. If I have it done again it is to remove the tumor. I don't have special plans for the weekend, but I will find something to do to make me feel good. Retail therapy sounds good.
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Run, I would be vey suspicious of some sort of allergic reaction, especially since the super cortisone ointment is helping. It might indeed be the Tamoxifen. Have you done an internet search to see if any other cases have been reported?
Kate, so glad you get a break from chemo. I hope the procedure is an option for you. Are they looking at your lungs? Are those nodules shrinking?0 -
Hi Gigil, Yes they are looking at my lungs and 2 months ago it showed that the larger lung nodule shrunk to 5.9 mm. I am doing CT scans again this week, and I am hoping it got even smaller.
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Kate, thanks for the explanation about the surgery. If they can just take that tumor out, that would be so great. Would that leave you with your original plumbing or a neo-bladder or something else? Nosy question and maybe you don't know the answer yet, sorry. Fingers crossed for lung nodule shrinkage and everything looking better in those scans!
GiGiL, there's some documentation of allergic skin reactions to Tamoxifen. The average MO might not have heard about it but derms have, or so I've read on the Bottle o' Tamoxifen forum. It's rare, a <1% frequency side effect. That's what my dermatologist thinks it is, but he also wanted to know whether bacteria had invaded the original rash. It seems it hasn't, or if it did, it's gone. I am pretty sure my derm will do a biopsy when I see him next. Ouch. But I'm not sure what he'd be able to see from a biopsy. Lacking great medical journal access, I found this "old" (1999) article from Swedish researchers about radiation recall dermatitis and other skin problems from Tamoxifen. http://informahealthcare.com/doi/abs/10.1080/028418699432653
(that may not create a live link, sorry, but you can paste it into a browser and then open the PDF)
Many of the people this article lists were able to resume Tamoxifen ("re-challenge") after a short break. My derm is committed to my staying on the drug in the long term as am I. And to be fair, I also haven't tried the gluten angle yet. But we are running out of the easy options. I am relieved that my itching does seem to be abating, and the pink rash is now hard to see and less raised except when I first get out of the shower. But I seem to be getting new spots. I've taken pictures about once a week so I will put some together for myself and see if that is really true.
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Joan I was thinking that you definitely need to do something nice and fun for yourself!
Kate, fingers and toes crossed for good results!
Runfree it's great that you are photo-documenting. I hope you are also keeping a log for food, detergent etc.Detective time!
Cindy dh needs a spanking for sure! Men.
GIGI, blessings on you for making this time so special for your dad.
Josie, it's hard with kids at this age. My Dd "came back" after taking some space, but now is so busy with her life I don't see her much again. But the love is there, as I'm sure it is with your girl, and they know it and will be back. Remember that if our kids don't need to cling to us that means we have done a good job!!!
Younger dd is having a tough time getting around now that I'm not her chauffeur any more. But she'll get the hang of it.
I really like my job so far. I have a student staff and they are completely wonderful, and make me smile a lot.First full week went by fast!
Sew, Brookside, Janis and whoever I left out hugs to you!0 -
RunFree - Have you ever heard of Erythma Nodosum? It is a autoimmune reaction and is usually on the legs. If you get a chance look at pictures of it on the internet. It probably is not that but just thinking of what it could be. It needs to go away.
Kate - WooHoo!!!!! No more chemo. Hopefully your appt will be what you want.
Cindy - Bad hubby. They are so hard headed. Ugh!!
Yesterday I spent 3 hours at the ER. I was there to get fluids and checked out for all this fatigue I still have. Well after sitting for 3 hours I asked the guy how much longer. He told me 6 more were ahead of me with real traumas and chest pain. Sooo I came home. Yup I did. I will just have to stick it out and try to down more water. I am still not doing good with this withdrawal. My Appt with the gastro went well and we are doing a scope first week of Oct for my stomach. Can not wait to see what is going on there. Also I finally got a rhumatoligist appt soon. We found one here and on the form I filled out it listed my disease and they even spelled it right. Well back to reading more posts. Check in soon.
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Runfree if I have the transurethral resection or even partial bladder removal I will still be able to function with my own bladder. It is only if I had full bladder removal that I would have a neo bladder, and none of the doctors are recommending that I have that.
Bunkie I am sorry that you didn't get seen at ER, and I hope you are feeling better soon
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Bunkie, thank you! I looked up erythema nodosum and also found erythema multiforme. Most of the pictures don't really look like my spots and I don't have systemic symptoms like fever or aches, but it's a good lead and I hadn't heard of it. I like how it usually goes away on its own. I suppose if the derm does a biopsy, that will be one of the things he'll be looking for. I see it's frequently a reaction to medications, so that lines up. Kind of freaky to read that these are connected with Crohn's disease, pancreatic cancer, sarcoidosis like you have, and leprosy! I was interested in the Epstein-Barr connection too because I had a kind of chronic fatigue for quite a while in my late 20s and early 30s, never really diagnosed. Lupus causes rashes too so I've looked up that one today, but it doesn't seem to be a match.
I'm so sad to hear that you are still feeling so rotten that you went to the ER, and you didn't even get any help. The scope and rheumatologist are better news. Maybe one or both of those will really crack the case. You have really been fighting for your health.
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Here's hoping Kate!
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Thank you truebff and SAB. I am clearly the beneficiary of my time with dad. We grilled steaks for dinner tonight. Beautiful full moon out there. He just wanted to sit outside and enjoy the fresh air. Moments to remember.
Bunkie, sorry to hear you are still struggling. Can you slightly flavor the water in order to get more down. I wish things would improve for you.
SAB your job sounds so wonderful. I am so glad for you. Daughters keep us thinking, don't they?
Cindy, my husband is quite stubborn about some things too. Frustrating!0 -
Hi y'all
Kate - yippee! Happy Dance)) you did it chemo done! You did girl warrior princess...now some R&R and maybe a TURB...much easier & get any junk out f your bladder! Until than retail therapy:)
RunFree - ugh the mystery rash and itch...answers soon picture history!
SAB - position sound fun:D TE best kind when yu look forward to going and feel appreciated!
Girls will adjust...
Bunkie - next visit to ER have chest pains...speedy admittance! Sorry you waited and waited and then left...in your pocket...so proud f you:)
GiGil - the lake...take a pic ...happy dad!
Joan - hoping you and DH have a great us weekend
Josie - your edd will get it together.,.raise a child up...they return to the right path..,the pig pen gets smelly and dirty...be patent mom shell be back:)
Moon over the pacific...waves...salty air...and GS giggles..,a good day:). Hubby is still in the dog house so...more beach time for me:D may see if my BFF is on the boat here...would love to go sailing on my old boat...just brings up issues with hubby...hoping they are back from Catalina ...ah:)
(((Hugs)))
Cindy0 -
Joan811 and Brookside--we had a wonderful brunch this morning that lasted into early afternoon!
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Joan and Brookside. So happy you got together. You are both pretty much as I pictured you! Hooray for these wonderful meetings! Where did you meet up. I can't quite recall. I know it was somewhere east. It looks like a charming place.
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Joan and Brookside, how neat!! What a great picture!! I'm so jealous.I wish I could personally meet each and everyone of you.
Bunkie , I'm so sorry sweetie that you are dehydrated and feeling bad.And that day darned ER being so busy.
GIGIL, sounds like your making some special moments with your father.
Kate, How is the retail therapy?
Cindy, sounds like your having a good time too this weekend.
Good for you.
We made a batch of lasagna for my parents last nite and brought it to their house to eat.It was kind of a thank you for helping me clean our backyard dinner.My DD Claire wanted to learn how to make lasagna so she literally wouldn't let me do anything she insisted on putting the layers together herself.Her reason, so she could take credit for the meal and not have to help with dishes.I don't know where she gets these ideas.GrAndma and Grandpa sometimes give her a hard time for not doing enough chores around the house and she resents that.Unlike my mother in law who we visit every Sunday we very rarely eat at my parents house with the family.It was a nice meal and everyone enjoyed it.BTW Claire may have made the meal but didn't eat that.We brought chicken patties for the kids since they won't eat lasagna.I have picky eaters.All the more for us though.0 -
Run free I hope your rash is doing better today.Glad to hear your seeing that dermatologist tomorrow.
SAB, thanks for your kind advice about daughters your right.
I'm proud of Sarah she has a job and pays her bills.I just wish she could come out and admit to me and her father that she is living at her boyfriends house.She knows I don't approve but I just want to hear her admit it I guess.She comes home when she's hungry and raids the fridge as we catch up on her life.Unfortunately sometimes she will just come by after work and its bedtime for her younger sister0 -
Josie, I understand. I always tell the girls just don't do anything you can't fess up to...problem solved :-) of course they don't listen! Cute lasagna story!
Joan and Brookside what a beautiful picture!
Bunkie you don't deserve these trials. All I can do is send a hug and I wish I could send you strength.
Kate did you buy anything fun? I went shopping for some clothes this weekend and could not find one single thing. Some days are like that.
Off to get some exercise.0 -
Joan and Brookside, I love that picture! Brookside, you sure have been zipping around New England meeting up--so great. I'm so glad you two could talk so long.
Josie, I wish I were going back to the derm tomorrow, but it's not until 9/30. My itching seems to have dialed up a notch in the past 24 hours, and I've been increasingly itchy on areas that haven't had any spots or rash at all, like my back. Last night after I took my shower (I'm taking them twice a day, with antibacterial soap) I found several areas where there were three spots in a line, over the space of about an inch. I looked up "rash spots in a line" and got scabies, shingles, flea bites. All ruled out. I had a very mild case of shingles last winter, but this can't be more shingles because shingles hurts rather than itching and it's generally on one side of the body, and nobody who's looked at me has thought it looked like shingles. Had a rough night, pitched battle of itching, despite the super powerful cream and a Zyrtec. This morning at our fortunately very mellow Unitarian church I was scratching and fidgeting like a cranky toddler. My mood goes up and down inversely with the scratching and visible rash. Scratching up, mood down. I will try to shake it off and get on with my day.
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OK, I'm back and happier: there were just three big-as-life deer in our yard, not 20 feet from the house! Dad, Mom, half-grown baby. We live right in town but our house backs up to a stretch of woods. We've gotten lots of wildlife over the years but not deer, and not this close to the house, and usually not this calm. I adore deer and this was a real treat.
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Oh Run free sorry that your itching is so bad.Sorry I should have nit relied on my memory about when you said your appt was. Have you checked your mattress for bed bugs? I know you said your husband doesn't have a rash but sometimes some people aren't bothered by them.I thought I read somewhere that the bites were like that.
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Oh interesting Josie! Seems as though I'd have bites on my face and neck, where I'm most exposed to the sheets, wouldn't I? I will look again.
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