Radiation recovery
Comments
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Sew, you aren't the only one who was waiting on SAB's response!
I know why there are no dermatologists in northern New England....they are all in New York and Long Island.
Runfree, so glad for the improvement. Years ago I had "bites" and drove myself crazy looking for mites with a magnifying glass. I decided it was scabies and saw a doctor and she found nothing wrong. Her reply: "Your skin is an organ and if something sets it off it can react as one organ." After my mx surgery and hotel stay in NYC, I had an itchy bumps rash on my legs. I went crazy thinking we brought bed bugs from the hotel and threw away my suitcase, washed continuously, slept down on the sofa (2 days post surgery) and inspected all the beds and floors in the house. We called an exterminator and he found no bed bugs. I again had a mystery rash, probably connected to medical procedures.Josie, what a difficult day you must have had. Can you envision Andy getting counseling or a kids' group? I wonder what his thought process is about the robbery and his things...very mature thoughts, but I hope he can learn to trust again.
i agree that individual sports and activities are good and do not bring the stress of team sports. I love the science club idea. There are also many fun "experiments" explained online using common kitchen items.
I cannot believe the neighbor. I can't believe the city enforcement...don't they have real problems to deal with?Janis, welcome back and I have to go back and read your long post....missed you here!
Kate, I have been experiencing very dry throat at times but I can't figure the cause. It worries me when I drink and it doesn't quite fix it. Time for the PCP to do blood workup. i hope you feel better...
Today was DH's Bday and I went with him to play 9 hole golf instead of work this AM. We also had dinner out and saw 'The Butler' which was good, even though the story did not reflect the main character's real life. I had wine with dinner and fell asleep in the movie. We had homemade cake (the good bad kind) and we agreed to work up a healthy eating plan for October-November. Always easier to put it off.
I have been watching US Open Tennis and asked DH if he would go with me one night. He said no....I only went once and it was a great experience (for me). Nobody around to go....but...
Friday I go to Yankee Stadium with DD who is moving...she got tix from Fox Sports for catered luxury suite seats behind home plate. What a treat....I love BB and NYYs.0 -
Bunkie, that basement! With all you're going through, that's the last thing you need. So sorry.
So glad to hear from you, Janis. The trip sounds awesome--Did you consider just running away from home and staying? I'm among the group waiting to hear how your neck feels after the ablation.
Echoing the lymphedema therapist recommendation, Jana--I went a week or so ago, just to have her move my scar tissue around. Had no idea how bound down it was, until the next day when I noticed how, well, free, my breast now is. Ladies, we agreed that occasional visits, maybe annual, can be a very good thing.
RunFree, so glad things are getting better. Maybe today your legs will decide to get with the program. Could it help, by the way, to take whatever you take for headaches? Perhaps if it can reduce pain, it can somewhat disguise the itching?
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Brookside, great idea! I'll pop some ibu right after I get off the computer. Joan, that is fascinating about your mystery rash after surgery. It gives me hope. How long did it last, and did anything you did help? I think the idea of the skin as a single reactive organ is probably what I'm seeing. Josie, I think it was you who mentioned scabies. I'll look again, but initially it doesn't sound like a match, because scabies will focus on areas of skin that aren't exposed, and this is all on my legs and now a bit on my arms. Also there are no tunnels. But that's just an initial impression. My new thing on my leg is lots of little bruises near, but not exactly on, the same places as the bumps. Kind of scary. I am going to assume--while continuing to look around for other possibilities--that it's just the subcutaneous version of whatever's happening on my skin. Or something like that.
Joan, nice of you to play golf with your husband and then the nerve of him to refuse to go to the US Open with you! Hey, could you send a few dermatologists up here? Tell them there's easy access to skiing and boating and mountain climbing. Don't tell them there's no movie theater
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Are the bruisey spots maybe from yesterday's scratchathon?
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RunFree, don't know why I didn't think of this before, but how's about taking a photo or two of your leg spots and emailing it/them to your RO?
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Joan it sounds like you will really enjoy that baseball game.I'm a Cardinalsfan myself but maybe that's because it's our local team.Andy saw his Neurologist this morning .Both my husband and I went with him.He has seen Andy since he was like 3, yrs old d a nd I think he knows him pretty well.He doesn't know exactly we by he wrote that or feels that way but doesn't think he is a danger to himself right now but he did ask about if we had any guns in the home or are they other ways Andy could hurt himself like pills.Well he suggested we seek a psychiatrist for him but he's not so sure we should just automatically jump into putting him on meds just yet.He did comment that a lot of children on the spectrum end up with psychological disorders.
RunFree I hope you get to the bottom of that rash soon.0 -
Thanks everyone for the warm welcome back. I will try to catch everyone up. The ablation did not help! The first several days i was really sore at the injection sites. I assumed that was normal and I would start feeling the pain disappear. It took awhile for scabs to form but it remained sore and it still is. I go back to see my doctor Sept. 9th. Not just that, the steroid injection wore off on my knee and i am really hobbling now. Will have to see what he says when I go.
Kate,you would love this beautiful home. You would love the cool temps. The view is amazing. I saw deer every morning and foxes several times. They are bird lovers and have these amazing feeders that hang over the deck. At night they bring the feeders in, they are on these long swivel arms and they just bring the feeders in. One night they forgot to bring the food in and later had a bear visitor. Adam heard commotion on the deck just after midnight. A bear had gotten to the deck and was having a snack. Adam spooked him away and brought the seed in. Their home is perfect, beautiful hardwoods, granite counter tops and huge windows all over. I just love it. There isn't a bad view from any window.
Sew, I really missed my boyz but they have two Golden's so I was never alone there. The dogs are wonderful and I walked the a lot up on that mountain. I will e- mail you some photos from our last stop in Cheyenne where we stayed with our friend Marcia. She has a pond and it was nearly impossible to keep the dogs out of it. Golden Retrievers just go with water.
I spent a day and night with my sister which was so much fun. She lives in Castle Rock, south of Denver. We ate and shopped. They have a huge outdoor mall there and we spent hours just looking at stuff in all the various stores. We went to Panera for lunch, I had never been there and it was heavenly. I didn't buy a thing except a small bag of special treats for my granddogs and for mine as well. The pet store was going out of business so everything was 30% off. I bought those two little bags and spent $11. That is all I spent the whole ten days. Adam and Jen wanted to attend the first BBQ beer festival hosted by the Rotary Club. It was in a park in Confier. Adam and Jen love beer, and there were so many micro breweries there. It cost $25 to get in if you wanted beer, you got a bracelet and that was all you needed. They gave out a glass and you just take that around and get all the beer you want. I don't drink beer, so I did not have to pay an admission fee. I told Adam and Jen to sample away, I would drive home. Adam gave me $40 spending cash for all the different booths. We just walked around, they of course drank beer and had so much fun. We all got different foods from different vendors and took a lunch break. Adam was so cute, insisting that I take a long sit down break. He got me a glass of ice tea and we all sat at the picnic table so I could rest! When we left we had to cut across a large meadow to get to the parking area. Adam insisted on holding my hand. Too funny! We did go on a trail walk one day and he kept saying we didn't have to go the whole mile and a half, he worried three miles would be too much. Ha...I showed him, at one point he even commented that I walked fast. LOL I told him my legs were not broken! I think my knee didn't appreciate all the walking but too bad. I had fun and that is all that mattered. I was spoiled rotten and it brought Adam and Jen and I so much closer.
It was very hard to leave, and hard to leave Cheyenne. We lived there for 7 years prior to moving here. Idaho is just not me. I want to get out of here so badly. My heart really tugged all the way home. Still I was so excited to reunite with the boyz, and of course the cats. Pistol was so cute, he couldn't get enough hugs and kisses. He cracks me up, he gets on the lower tier of the island and stands on his hind legs and stretches to wrap those long arms around me. Then he rubs abnd rubs and caresses my face. He is so cute.
I feel badly that I am not yet caught up but trying to get there. I don't ant to leave anyone out but please knoe that I am here and reading and catching up. I am so sorry for the struggles many of you are enduring right now. Know that I think of all of you often. I am so glad that we have each other to get through the bumpy times. Then to simply share the joy of living.
I love you ladies, you are the best!
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Runfree it is so wonderful that your father attended the March on Washington.
Bunkie I am so sorry you have more flooding. I wish you could get out of that house ASap.
jOSIE i AM SORRY THAT YOU HAVE SUCH AN AGGRAVATING NEIGHBOR.
Sab I hope you are feeling more energetic today. You can't keep an energetic bunny down.
Janis I adore Denver too. I lived there for two years when I was in my 20's.
Sew, Runfree, Bunkie, Josie, and Joan thanks so much for the support. I am feeling a little under the weather today, but it is not too bad.
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Hi everyone. I wrote this long one and when I sent it the darned thing disappeared!! I am hanging in there with this house. Thank God it was not standing water all over again. I got smart and everything I have is in plastic containers or up odd the floor. At least it is not a basement I spent a ton of money on. It is very basic. Leftover paneling from the 70s etc. I remember I lived down there my senior year because I did not want to be part of the rest of the house. Like an apartment. It took my contractor about an hour to suck up all the water. I have 4 projects to go and I can try to sell it.
I got my mammogram today. I thought they would let me see my RO and he could look at the tests. Instead I was with his nurse and she did not have results. So what was my purpose in seeing her? Who knows. Lets hope everything is ok. When I woke up this morning I was really feeling like I was not going to go. I had a headache, very fatigued and my vertigo was acting crazy. I was so determined to go and when I got out of the house I started to feel a bit better. By the time I got home I realized that I was having some anxiety about the test and I was scared. That is probably why I slept bad also. I am still at my lower dose and this is my 3rd week. I remain undefeated!!
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Bunkie, you are a champion of persistence! I am shocked that they wouldn't give you the results of your mammo right away, for crying out loud. I hope you can get some results tomorrow rather than having to wait over the long weekend.
Janis, it's so sad that you are not happy where you live--and that seems true for so many people on this forum. I'm not crazy about where I live, but it's not as far off as some of your situations are. I got lucky compared to my other job options. Professors can't be choosy, not in my field anyway. Anyway it's so great that you were able to visit your son and DIL and your sister. What a lot of fun you had! The beer festival sounds great. I too would have opted out of the beer and still enjoyed it.
Kate, I'm sorry you are under the weather. I hope this is your last hard day for this round and tomorrow leaves you alone. Do you have anything fun planned for the weekend, or is it too soon to think about that?
Josie, what a good idea to check in with Andy's neurologist. It's good that he doesn't think Andy is in immediate danger and is not in a rush to put Andy on meds, although I have seen them really help people. I hope you can feel confident that you're doing all the right stuff.
Brookside, I've never had an email address for my RO. And she's officially on vacation this week, and I suspect Monday too. Plus she was never that interested in my legs, didn't look at them when I was there, because she was assuming the flea bites were outside her domain (and probably her knowledge base). I'd call the NP back before the RO, I think. Nevertheless, I have been taking pictures every couple of days, and it's time for another photo shoot to document the little bruises. In answer to your question, I don't seem to be bruising most where I scratched most. The bruises are almost all on my upper legs, but the lower legs are the itchiest and the most scabby. (It's VERY unattractive! And just when my breast is looking so pretty! There goes my modeling career....) I'm still thinking the prednisone is helping a little. I didn't scratch today in my meeting, and I've been home a while and still haven't gone nuts the way I did yesterday. Time to take more ibuprofen. It just may be a slow recovery. I slept last night without anything! No Ambien, no melatonin, no Benadryl. But not quite enough, so I'm tired. The kids have tomorrow off and so do I, so it's a four-day weekend. I have to work a lot on getting ready for the school year, but I've had enough meetings for now.
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First things first:
This is for you Bunkie! Strength of mind and spirit award.
Runfree, I hope you get this medical mystery solved or resolved. Listen to Brookside, who I think we should rename "levelheaded" or "wisdomwoman."
Josie, Great idea about neurologist. He sounds good. I must say that our kids that are wired differently sometimes must feel alone or outcast or different and it is not surprising to me that they need support through counseling.
Janis, the perfect trip. I hope it's not too long before you can go back and visit again. You sound so refreshed. But I am sorry that the pain was not managed through your recent treatments. I wonder what the doc will say.
Joan, and Sew, I must admit I am completely surprised not to hear from HR yet. I know the manager had to do a lot of paperwork, but it has been a full week. I hope nothing went wrong! (I don't have a secret life, so it can't be the background check.) Tomorrow is Friday, and then the long week...which is OK I guess because it gives me a little extra time to get dd younger squared away with her impossible schedule.
After an overwhelming week when every little thing seemed to go wrong I am going to get in the car and go to LA. BF is having a small surgery, and it's a great excuse to go down and keep her company. Leaving at about 5:00, there (I hope) by 10 or 11 depending on Labor Day traffic. Have a fun weekend ladies. Kate, our resident party animal, any partying planned?
Hugs all!
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Kate - You hang in there. It will pass soon ...I hope. Did you say you were going to go to Chicago to see your kids? The weather will cool in Sept. Like you like it.
RunFree - You will be fine with the prednisone. A short treatment usually clears up rashes. Especially mystery rashes. When I went in for my 6mos mammo on the BC breast I met with the RO and got results right then. So I had to wait 30 minutes so his nurse could tell me I see the Dr when I come back in 6 mos. So I asked what they looked like and she said they have to read them. If there are any problems they will call you. Wonderful. She said I am giving the radiologist your tests from the last 3 years to compare. Why? I hate stuff like that. After BC you should get immediate results.
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Bunkie at least they are trying to be careful not to miss anything .I'm sure everything would be ok or they would have scheduled a needle biopsy.Or at least that's how they did for me.I knew what the findings were pretty much before I left.How about you? Is this the same place you have been to for past mammograms?
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Bunkie, I am so amazed at how you have lasted these 3 weeks...I noted that when you went out you seemed to feel better...can you schedule an optional short walk or outing each day?
My cancer center has me wait for my results and I get it in writing right after my tests. If there are any doubts, they take more pics or schedule more tests. But I like the peace of mind...I have had 2 annuals so far and both were clear. I wish the same for you.Josie, I am glad you followed up with the neurologist. I think you will have some research to do about the medications decision...I hope you can find the right support network. Do you have time for a family support group where you can meet with other parents?
I am looking forward to the BB game Friday PM even though it will take a lot of planning. I will go by train and subway which I don't love to do alone, but it should be busy since it's holiday week end. I hate to carry a lot of stuff but I want to bring my camera. DH will bring my week end clothes to NJ Saturday morning. We will help DD pack the first round of essentials in a big truck, and Sunday we will drive four vehicles to Massachusetts...one way for them...then DH and I will drive home via ferry from CT to Long Island on Monday.
I cry at every possible opportunity now...
but I will be OK...everyone is healthy and it's a positive move for a new job. DH says he is very tired of my moods!
Josie, I like your new photo...not sure when you changed it.Janis, I, too, love Colorado and consider it my 2nd home. Your trip sounds like a dream. The home sounds perfect for the location and for your family. You were spoiled, but you earned your keep! I am sure those pups miss you. I love the story about the blind doggie...it is a beautiful example of trust.
When I lived in Denver, we cut down our first Christmas tree in Conifer. We have a photo which I'll find and post some day. I love Castle Rock but it has changed so much since I lived in CO. We used to go to Castlewood Canyon State Park where Dh and friends would hike down and get petrified wood from the stream. I still have it by my door here in NY.
I do hope you will get to go there again soon. And maybe some day be able to move.
I am sorry that your procedure has not brought you the expected relief. Am so proud of you for hiking!!! Go girl!Gotta get a few hours sleep...tomorrow I clean up my office and storage areas...I got the classroom ready for Tuesday. We have 2 days of school then another 4 day week end for Jewish holidays. Easy week for me!
Hugs everyone...happy week end and inevitable end of summer....
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Bunkie, Please remember that sometimes you definitely will feel better if you get out of the house. Most times it works for me. When you are alone, and only into your own head things seem to be worse. Sorry you have to wait for mammo results. That sucks, but I am sure everything will turn out fine. Unfortunately I can't go to Chicago now, because of my chemo schedule.
Runfree hope you are feeling better
Sab I hope your friend's surgery goes well
Cindy I am thinking about you, and concerned because you haven't posted. I hope your hubby is doing better
Bunkie, Runfree and Sab thanks for the support. I am feeling a little better today. I don't have anything exciting planned for the weekend. I will have a little girlie-girl fun Sunday morning, because my hair stylist and friend Joanna is coming over to flat iron my hair.
Have a great holiday weekend everyone
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Josie, Joan, Kate- Thanks for the well wishes ladies. I agree it is better to be careful. She said I have dense breasts. I have always had them. Not having kids I guess.
I went to the bank today and the drug store. It is really hot and sunny out there. About 90 and the humidity is also 90%. That is what I miss about Cali. It gets hot but usually not humid like this. Kate you would be roasting. My step sister in law invited me up to her cottage on the lake but I can't go. Too many trees. My allergies would be nuts and she is a hoarder. Collects stuff from every place and they are all sitting about. I got used to breathing room when I downsized. It is hard but I did quite a bit. I stayed with her one winter while I had work done on my home. I kept tripping on stuff. Just not safe. I ran around with a mask on and a vacuum in my hand all winter.
RunFree - How you feeling on the prednisone? Is it working?
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Bunkie we are having an equally bad day in Santa Monica. It is 89 today with humidity that is very high too. This is unusual for us, but we had a very mild summer up until about August 20. It was quite hot here yesterday too, and I kept my air conditioning on all night, and it has been on all day today too. I won't turn it off till it is 65, but that might not be for a while.
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Bunkie, thanks--I think my legs are gradually improving, but I can't say for sure that they wouldn't be improving about the same amount without prednisone. Now the little bruises are on one of my lower legs too. I think the bruises must just be part of the healing process from whatever it is that attacked my legs. My legs are itchy but not as constantly or as deeply; however now when I scratch, there are lots of little scabs that I can't help dislodging. A couple more days and maybe that phase will pass. The pred did seem to help my breast, so that's something. I am not feeling any side effects at all, at least so far. Both the NP and the pharmacist said some people just don't feel much on pred, and I guess I'm in that camp.
I am so glad you got out, Bunkie, and I'll add my voice to those recommending you do that as much as you can. But that kind of heat & humidity just knock me down.
Kate, I hope your post-long-chemo Friday is treating you well. Glad you have that hair appointment to look forward to!
Joan, I wish you courage as you get through this long hard weekend.
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RunFree, I just thought of something.Are you still taking Ibuprofen? That will sometimes cause you to bruise so easy and little blood vessels break under the skin w/o any trauma.My mom had to stop taking it because of that.
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Good morning. Seems quiet here.
I am at Dd's and the girls just woke up. Doing OK so far. I am driving one of their cars from NJ to MA tomorrow. At least I will be alone if I cry. It will be good for me to see their new home and help them move in.
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Joan, (((hugs))) try and enjoy your time with them and cry if you need to.I know it's a hard.
My hubby works all weekend so today is his only time off.He goes in tonight at 6pm works all night.He can come home if he doesn't have any calls.Then he works all day tomorrow and Monday.The joys of working for your family.It's really rotten Sometimes.If he actually got paid for every hour he worked we would not have any problems with finances.0 -
Runfree and Bunkie I hope you are both feeling better
Sab hope your friend's surgery went well. Sorry you came here on the hottest day of the year. OMG it was unbearable here yesterday.
Cindy I am thinking of you and hope your charming hubby is doing better.
I am feeling ok. I have been shut in the last couple of days because of not feeling well, and the heat yesterday. It is supposed to be a little cooler today, so I will be able to go out.
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Thanks for all the good advice! I never thought to continue with the cream after completing radiation. Duh! That is probably why my breast is still discolored and leathery. Will start back right away. And, PT for the lymphedema sounds like a good idea. Will call Tuesday and get that set up right away. I also completely forgot about doing the arm exercises too. Thank goodness for this forum!
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Jana, yes, we're all just so glad to be done with rads we don't realize TLC is required for some time to come. Glad you found the tips helpful.
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My legs are worse today. I'm so discouraged. I woke up in the night itching, had a battle of scratching/resisting/scratching for an hour even with additional Ambien, finally dozed a bit. This morning I ran in a 4.2 mile road race, slowly, which I only agreed to do last night with a couple of friends who are not especially frequent runners. So the distance was fine and the pace was easy, and I'm glad I went because distraction helps. I wore light running tights and tall socks, but a couple of inches of my hideous legs still showed. I think I might be getting new spots, and the welts are worse and the itching is bad again. Day 5 on prednisone and any progressing should not be reversing! Unless it really zooms toward improvement from here, I will call my NP back on Tuesday and ask what hoops I have to jump through to see a dermatologist within a two-hour radius and in less than a few months. Figures it would get worse on a three-day weekend. Josie, I'm not taking ibuprofen all that often, but I did just read that prednisone itself can cause bruising.
Kate I hope your weather and your symptoms ease up so you can get out today and have some fun. Joan, I am thinking of you too. This is one of those big life transitions, sounds like, of which there aren't many on this scope.
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Runfree - You are right. The steroids should make it better. What is your doseage? I am dissappointed now that you are my prednisone sister!!
Kate - Good you are going to get out. I am sure that being housebound has had a lot to do with my worry and mental state. When I was in Cali I was out everyday in the morning at least. So much to do. Nothing here really and the humidity takes away my breath.
Jana - I missed your early posts but yes I still cream my boobs after almost a year. If i don't the skin does strange things. I still use a tiny bit of aquaphor on my nipple too.
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Bunkie, I did 3 days at 40 mg, and now I'm on my second day at 30 mg. I'll do another day at 30, 3 at 20, and 3 at 10, or at least that's the plan.
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RunFree - That should calm down anything brewing in a few days. Might take a week. I hope it works. That is a pretty standard dose for a quick fix. Hang in there.
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OK, thank you Bunkie, yoga breathing. I was told to expect it to make a visible dramatic difference in 48 hours, and I haven't seen that. But maybe it will take a little longer. My Maine sister just gave me a weird idea: brown-tail moth allergy. In North America, these moths are found only on the coast of Maine (where my husband and I went just before my legs blew up) and on Cape Cod. Their little hairs can hang around in the air and on surfaces and cause allergies in sensitive individuals that can last for days or weeks. The rash looks quite a bit like poison ivy, which is what most people seem to think my rash looks most like. I am not sure what I would do about it if I could ever confirm my legs were attacked by brown-tail moth hairs, but it's an interesting theory. My legs haven't been quite as bad today as they were overnight, but worse than the past few days. I will take Benadryl again tonight, although it apparently reduces the effectiveness of Tamoxifen. I'm trying to switch off days of taking Benadryl and last night I didn't. Tamoxifen hangs around in the body for a while and it's a years-long game, so I just have to hope this little partial vacation from Tamoxifen won't be something I regret.
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Well, RunFree, I guess the leg goblins don't respond to steroids, and whatever it is doesn't seem to spread like poison ivy would, or your fingers would look just like your legs, so it's maybe not a contact allergy, and I know the itching is driving you crazy, so are you really going to wait until Tuesday to try to follow up on this?
Glad you're feeling better, Kate, and that the weather is nicer.
So sad, Joan, that your daughter is moving, but now you have another town to explore and discover when you visit.
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