Radiation recovery
Comments
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Joan, I'm so sorry about your Disney disappointment. If my reading between the lines is on track, it seems your kids happily planned a little vacation with their good friends, whose children are closer to five than two, and just didn't connect with your last year's frustration at not being able to make that trip. Probably under any other circumstances, you'd be delighted to babysit. I don't know what it is about this generation (and here I'm really talking about my three boys), but they do seem awfully self centered. Two much too-good parenting?
RunFree, I sure hope the dancing and partying scared your itchies away. So glad you're seeing the derm tomorrow.
Kate, so glad your second opinion is just one day away. As you know, if he thinks the surgery is a good idea (and we all hope, with you, that he will), he'll be required to speak very, very clearly about all the pro's and con's of the surgery, and discuss them all with you. I don't know about you, but (now don't laugh) I have a history of selecting the risks I think might apply to me. Really silly, I know. And guess what? My crystal ball has a habit of fogging up from time to time.
I'm so very sorry you lost your neighbor, Josie, so happy you and your daughter will both be able to get to the funeral.
SAB, hoping your new job way, way exceeds your expectations.
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Joan, how scary! I'm glad you got the fire under control fast, but smoke smell is so stubborn to get out, and a fire sure leaves a mess. What next??
Bunkie, your Bambi scene in the backyard would be appealing if it weren't making you feel worse. I'm with Joan about finding some kind of repellent. I'd turn to Google first, because if you go to a pet store or someplace like Walmart, they might sell you something pricey and full of chemicals. I don't suppose your new Whole Foods is open yet, which is too bad. Hope the skunk smell gets out of your house fast. In the long term, I'm rooting for you to go back to CA, where you felt so much better.
Josie, I'm sure your friend's granddaughter will be glad your daughter is at the funeral, and her son will be gratified to see people making an effort too. When my dad died, I was grateful for every single person that came. And it will be good for you and GD to go, despite the tricky logistics. I hope you can work it out with your job in a way that's smooth for all concerned.
Kate, I know tomorrow is such a big day for you, and then Friday is another. It's good to hear about the experimental drug. I was wondering about hair-saving cold caps for chemo--Sciencegal talked about them--but this sounds even better, if you need it. I hope you are feeling good today and then I'm wishing for the best possible conversation tomorrow.
Cindy, Janis, Brookside, and others, thanks so much! The party was really wonderful. I'm so glad we pushed ahead with it, even though I've been pretty down and I've had this unpleasant cold on top of my rash. The cold cleared up in time, and the house even looked good; better yet, my husband and I are getting to the point where we'll do the amount of cleaning we have time for and then not feel embarrassed about the rest. Anybody looking for dirt or clutter could have found plenty, but we worked all day and the main rooms looked fine. I wore a little black dress that I think is really flattering and some black tights, so my rash didn't show. We had enough food, lovely people came, everybody mingled, and then a bunch of us danced! Cindy, you bet I flashed those (tights-clad) legs! It was very nearly a perfect match with my vision.
My actual birthday is tomorrow, and I'm feeling a little better about the big number. The rash still itches and is still spreading. I'm very glad I have the derm appointment tomorrow even though it's not how I thought I'd spend my birthday. I will get a nice restaurant meal out of it in any case, and maybe even some answers.
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Run Happy Birthday tomorrow. Glad you got to have a great party. You deserve some fun after all of the rash misery lately. I hope they get to the bottom of it. My sister who has RA had a rash like that and it plagued her for a very long time. They could not determine the cause for it, but it affected her lower legs. It eventually cleared up, but she never knew what she was doing that either caused it or helped it to clear up. Rashes are so hard to diagnose. Hope you get some answers soon.
Kate, here's hoping you get some answers about surgery and that you can make an informed decision about that and the experimental drug. I hope tomorrow goes smoothly for you.
Joan, Cole is slowly healing, but even after almost 10 weeks, he is still not able to put his leg down into a 90 degree angle. His doctor says the fracture is not healed enough quite yet. He is able to do a little weight bearing however, so that helps, and he has now learned to transfer himself onto the toilet and into bed, so that is a huge relief for my DD who at times found herself having to lift a 90+ lb. boy. Maya is loving first grade. She lost both of her top front teeth right before school started, so she looks both funny and adorable. She doesn't have homework, so she is making up her own and spends lots of time practicing her printing and making up math problems for herself. She is such a fun kid. We have to miss our annual fall trip to Disney because Cole's leg has to continue to be extended for awhile. Hopefully I can get DD down there for a long weekend. She needs a break.
I did a lot of cooking for family meals this weekend. We are surrounding Dad with home cooked meals and football and family attention. He is loving it. His immune system is so weak, we are trying to keep him out of crowds without making a big deal of it. He insisted my sister take him out for breakfast this morning. There is really no stopping him. He knows his medical situation, so we will have to let him decide how far he is going to go to protect himself. He is very with it, and knows what he wants and we have to respect that. He says often that he feels mom's presence with him at night, and it is very palpable. It is a great comfort to him. He is teaching all of us how to die. He is an inspiration.
Hope you all have a good week. Early fall is just the best here in Minnesota. The leaves are beginning to turn and there is a crispness to the air. Tomorrow I get myself back to the health club.
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GiGiL, thank you, and thanks for the story about your sister. That's very instructive. I'd rather know the cause than not know, but if it clears up and stays gone, sooner rather than later, I won't complain. I'm so sorry that little Cole is healing so slowly. It must be incredibly frustrating. I love what you are all doing for your dad. Somehow I am comforted by the idea of him thinking, With the time I have left, I'd rather go out for breakfast than be absolutely safe. It reminds me of this piece in the New York Times, which my mom just sent me the link to (from her laptop in the next room, since she's still visiting!):
The author kind of meanders, but she comes back with her main point at the end, and it's one I quite agree with in thinking about how to live life well, right down to the particulars about bakeries. Good message for a birthday that feels like a passage into new territory--or as a friend said, the start of my next half-century. Anyway thank you for your wisdom.
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Happy birthday, RunFree. May your dermatologist be feeling particularly brilliant today, and also the chef in whatever restaurant you choose. Miserable though this whole thing might be, I sure hope Birthday Day goes down in history as the day you start getting rid of the this rotten rash for real and for good. Now that'll be a great birthday gift.
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Good luck today, Kate. I sure hope this doc will be bowled over by your Princess Warrior aura. If this guy turns out to be a real stick in the mud, well, as the Queen of Hearts would say, "Off with his head!" He sure ain't the only fish in your ocean, and, like in that old Dating Game, you still have candidates #1 and #3 to choose between.
In your pocket, everything crossed.
You are so lucky to have an MO you really, really like and trust with whom to discuss all of this guy's (and the others') input. Peace, strength, calm, focus, forward charge!
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Happy Birthday Runfree!
Thank you all for the support
I am ticked off. I talked to the doctor today, but he did not examine me. He is having me schedule an appointment for next week to do that. So I wasted a trip for NOTHING. I DESPISE UCLA so I would never have this doctor do any procedure for me. Today he said surgery was an option, radiation was an option, just waiting to see if I have bladder symptoms and then do the surgery as an option. He also said that having what I had when I was in the hospital in April was another option. That was a transurethal resection. He said if he thought surgery was an option he wouldn't remove lymph nodes. OMG this was a total and complete waste of my time. A cystocopy takes 5 minutes yet he didn't have time for it. Now I have to come baqck next week for a procedure that should hav3e been done today
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Hi y'all
RunFree - Happy Happy Birthday to you! Enjoy your night out...skin behave. Hope your Bday wishes all come true
Kate - grrrr! WJH:( breathe, a sip of wine...relax try and not let this blip ruin your week. I'm looking for the silver lining so reverse your princess warrior coat...cakeballs...please! Sending (((hugs))) not right just doesn't make any sense...ugh:( so off with their heads!
Brookside - check that crystal ball!
Josie - hope your friends service was uplifting and a grand celebration of her life...peace be with you.
GiGil - your love of your father, Cole, family...is so heart warming. Wish we could make it all easier with a hug&kiss...so XO! You and sisters are giving your dad such a gift and a heart lesson for generations.
Joan - fire in the hole! My my disappointment and then some. Hope you are able to work something out ...it's hard when we plan and our kids plans shift...:( breathe walk on the beach ...I always wonder how many times I disappoint my mil & mom with activities...here's to a good week...no disappointments.
Bunkie - brave warrior...hang in there...now a skunk phew:(((. Bambi's love the gardens candy plants:) I try and plant oatmeal in front of the candy, but Bambi still works towards the roses...repellant spray stinks works...wear heavy duty gloves or that haz-mat suit!
Janis, Sew, Gram, gals...lets party we need a coast to coast group (((hug)))
Hubby goes to diabetes school tomorrow yippee! This morning he asks, " I'm due for 15 units, but my shot only has 6 units...what should I do?" Lets see open the refrig get a new shot-gun and 15-6=??? LOL
(((Hugs)))
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OMG when I went to schedule the appointment for the cystocopy I found out he is not going to be there next week, and he is booked for Sept. 30, and the soonest he can see me is Oct. 7. To heck with that. I emailed my MO and told him about all the delay, and does he know another urologist who can do a cystocopy this week.
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(((Kate))) - unbelievable
off with his head and on to another!
Hope your MO responds quickly...you do NOT need this stress and uncertainty.
Sending calming thoughts for a responsive quality urologist to appear ASAP!0 -
Runfree, happy happy Birthday!!! Hope it was good.
GIGIL I hope your GS will heal soon.Poor little guy.And your daughter deserves to go to Disney for the weekend.
Cindy hope your husband learns a lot.
I did not get to go to the funeral.I knew it would be disastrous to not come in at all today.Well I tried to talk to my boss to ask her but every time I turned around to ask her she was either busy or had her office door closed and then I was so busy too.I really ,really regretted not being able to go but at least my daughter was there and she was a great comfort to her friend.She did make me feel a little guilty tonight though.My friends son was very understanding though.I hope I can forgive myself for not being able to have the guts to call in today.
Kate I'm sorry your appointment was such a disappointment..0 -
Such a frustration, Kate, and after such a long wait to get in to see this guy. What a totally rotten disappointment! I sure hope you can find surgeon #3 quickly. Thanks for sharing all the options he indicates you have. Even though you know exactly what you want to do, it's sure nice know that you have choices.
Joan, you really do have a huge burden. I sure hope your hubby becomes a "A" student at diabetes school.
And Josie, how stressful to be torn between work and saying goodbye to your friend. Can you maybe take a little while just to "tell" her how much you would have liked to be there?
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Kate, that doctor was just scheduled in tightly today and didn't want to take the time to do your cysto. You should have refused to leave until he did it!! I would have pitched a fit, but I have worked as a clinic administrator and I know that the squeaky wheel does always get the grease. I know you are no push over either. I can't believe this doctor would just put you off that way when he has got to know how badly you need answers!! I am appalled. If I was running his clinic and you came to me for help, I would have been a loud buzz in his ear for you.
Run, if I remember correctly my sister had to start elevating her legs more at night, as her rash was suspected to be caused by circulatory insufficiency from sitting at a desk so much. The itch was under the skin and nothing would touch it. She used hot packs, and ice packs and massage - benadryl cream, cortisone cream, you name it. She was so miserable for a good long while. To look at her legs today, you would never know she ever had a problem!
In regard to Dad we all agree it is the quality of his life, rather than the quantity that is most important now. He is calling the shots, as it should be, right?
Cindy, my husband is an MD and still he does not like to follow the rules. He becomes quite forgetful in regard to the things he needs to do to maintain his health. It is so frustrating. I hasten to say he does a lot of things right, but leaving salt and fat alone are two things that make me cringe. When we got to a movie, it is all I can do to keep from just snatching that bag of popcorn out of his hands when he loads it up at the dispenser!! UGH! No amount of coaxing on my part can get through to him when it comes to popcorn of all things.
Brookside and Joan sometimes I think we have been too conscientious in regard to our kids' needs and feelings - even as they become adults. Who did that for us? My parents sure as heck didn't.
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SAB - still in the thrill of the new position! No Monday morning oh no...off to work I go! Hi Ho:)
Josie - so glad you did visit your friend the other day...she felt your love...today would have been nice, but it wasn't meant to be...daughter was there...job is stressful situation breathe its ok...give yourself a (((hug)))0 -
Kate, you'd better not tell us the name of this urologist because we will go GET HIM! I can't believe he didn't do a cystoscopy and after you waited all this time to see him! I think writing your MO and asking for another urologist who can at least get the image is a great idea. This doctor today knows what the stakes are and he's still treating your visit lightly. I'm really appalled. I hope your MO can act fast to get you in somewhere else.
Josie, that was a blow, not being able to go to the funeral. Then again, if you had to choose, maybe going to see her while she was alive was the more important visit. It's great that your GD was able to go. I'm always sorry when people hold their kids back from important funerals--I think it's important for them to go.
Cindy, good luck to your husband in diabetes school! Whole new world for him. I hope he is at the head of his class!
The dermatologist gave me much better quality attention today and wasn't nearly as rushed. I think getting his last appointment of the day was a good move. He did not do a biopsy, but he did culture a few of the spots. I have a little suspicion that he didn't do a biopsy because he's away all next week and wouldn't be able to act on the results. Anyway he still thinks the rash will respond to a stronger antibiotic, Bactrim, for two weeks, plus the very same steroid cream, Triamcinolone, that I already used on my radiated skin. I told him it didn't work on my legs when I tried it a couple of times, but he thought it was worth trying it twice a day for a while. Plus a Zyrtec at night, twice-daily showers, keep everything really clean. He said even if it's a drug reaction, I need to stay on Tamoxifen, so we'll just smack the rash down. Glad we're on the same page about that. He also said that the pink raised parts, which I've been worried about because they're the parts that are spreading, are not a second rash, but an immune response to the real rash, which is the spots. The raised part is appearing on my arms now, but he said that's like my body sending troops and some of them get off at the wrong exit. He also brought up the topic of gluten again, and he said if I'm really miserable over the next couple of weeks, I should try going off gluten for a couple of days. I asked if a gluten allergy or intolerance could just pop up out of nowhere at my advanced age, and he said that's what disorders are like. But when I reminded him that this started as spots, like flea bites, he said, "Right, that sounds more like folliculitis." The Bactrim is in case the particular staph is MRSA, the drug-resistant kind, which college campuses are really terrified of. I assured him I'm not using the weight room right now, and he assured me I'm not dangerous to others when I use the bathroom at school, and I'm not contagious to my family unless they share razors or wet towels. That was a relief because I've been concerned about that. He said not to use calamine while I'm using the steroid cream. I'm due to go back in two weeks, at the end of the day again.
I've had a very nice birthday, and I really feel properly celebrated. Thank you all for your lovely wishes! My mom and husband and I did go to a very nice quiet restaurant and we had a fun time. It has been a whole weekend of festivities and processing, and I think it has been quite effective.
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Runfree still your bday here in California...happy birthday may your rash be banished!
Josie light a candle for your friend and say a private prayer. You made the only choice you could.
Kate I would be angry too.
GIGI I am in awe of how loving and respectfully family is.
Oh my, job is super busy but very good so far.
If I didn't mention you know I am thinking of you. Hugs!!!!0 -
Cindy, Josie, Brookside, Gigil, Runfree and Sab thanks for the support. My Mo wants me to wait till Friday when I see him, before scheduling an appointment with another urologist.
Josie I am sorry you weren't able to attend the funeral, but glad your daughter was able to go
Gigil this doctor would not have done a cystocopy today if I got down on my hands and knees and begged him. Now I am glad he didn't do it, because I no longer want him to examine me. I will pray for your father
Runfree I am glad you had a quality dermatologist appointment, and hope that you will finally get relief. I am also gald that you had a fun birthday.
Sab I am glad your first day went well
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Well, RunFree, sounds like finally you're on your way back to your once perfect skin. No worries about others (by now your family would have let you know if that were an issue), and the doc didn't trumpet, "Yahoo! Here's one for the medical journals!"
More waiting, Kate? You sure must be needing that donut shop and that margarita place. What a breakfast that would be!
Gigi, you are everyone's rock, and it seems that right now they all need you. Are you working in any R&R?
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Run free I'm so glad you got to see the dermatologist yesterday.I hope the new antibiotics work.
SAB I'm glad your new job is working out.Good for you.
Thanks to everyone for their kind thoughts on my funeral dilemma with my friend. I was very proud of my daughter going without me and being there for her friend. My friends son played the guitar playing Amazing Grace and the one wish she had was for her son to release 2 doves at the ceremony.It was all done graveside and at the end they lowered the casket into the ground.I am so happy it was beautiful for such a beautiful person that she was.My daughter did a good job of filling me in on the details of the ceremony.0 -
Brookside it is only 8 am here, but a margarita and shrimp quesadilla would be perfect for breakfast
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Yum! Too bad I brought my lunch. Also too bad I have to chair a board meeting in an hour--margaritas don't go with meetings the way martinis did in the olden days. I remember lunches where we ordered a martini when we arrived, then another martini while they prepared lunch, then brandy after. No wine in those days. Sometimes I wonder how I ever managed to accomplish anything during the afternoon. Today, I'd probably just conk out at the restaurant.
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Joan and GiGi, I too relate to daughters... so sorry for thier oversite on their (((so obvious to all the rest of us))) you two WONDERFUL MUMS!
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Thank you Brookside! I always wondered about that expression "three-martini lunch" because I couldn't figure out how they'd fit in three drinks. I think most meetings would be much improved by margaritas. And Kate, I'll take a shrimp quesadilla too while you're at it. And a donut.
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I have been so tired this week...can't do anything after work. I got home after 10 tonight and have to leave here by 7 AM or no parking space and late. But I had to catch up here...it always helps in many ways.
Josie, I understand why you went to work. I am very glad your daughter was able to represent your family. Please try to focus on a happy memory and keep it in front of your eyes.
My gas oven contained the kitchen fire, so not much damage; the smokey odor didn't last. The stove top works; but the oven and broiler are apparently destroyed. I don't want to get a new range until we redo the kitchen so I may get a counter top oven to hold us over.Thank you to all who offered support on my disappointment over not going away with my kids. Brookside, you figured it out perfectly. They are going with friends and it is not my time. One disappointment i feel is that I said to DD that though our visits will be fewer, we can spend quality time away someplace wonderful. I am accepting it and will go and babysit with sweet Caroline for 2 of the days they'll be gone...even though I fear I will be so sad when they walk out the door. I don't want to be in that big house, new neighborhood, alone. Not fearful...just lonely. And I don't want to see my grandaughter go off to celebrate her birthday far away. oK OK enough...it is happening and I will go and it will be over and I will get over it. Sometimes I feel like I have to harden my heart.
I, too, was not the best daughter! I am sure my mom, who lived alone, had many disappointments via me.Gigi, your family has been through so much this year...and in years past. It is sad that Cole "lost" the summer and still cannot bend the leg. Is he in school? Or does he have more rehab first? Maya sounds adorable and first grade is such a milestone!!!
I agree that your family exudes strength...but more than that, I feel a peace in the way you are accepting what is and making life work in spite of the challenges. I am sure that as the mom/grandmother you feel a lot of the pain of your loved ones. I am sending a special big hug for you this week, and prayers for peace and laughter in your lives.Run, glad you danced the night away. I know it is frustrating when the doc prescribes something you may not believe in. I always wonder that if I do just what I'm told, maybe it will help. I hope in your case it will.
Cindy, hope DH figures it out...hang in there.
Kate, I just can't believe what you go through sometimes. I never understand the doctor scheduling with no regard whatsoever for the patient's needs. It sounds like there will be some options so prayers are going your way. Please try to stay positive.Janis, hope you are doing well. I was wondering, where is Elizabeth? I have not seen her here for a long time. Do you still keep in touch?
SAB...I know you're going to go far!
Sew, thinking of you.When away too long, the posts get way to long!!!
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Joan I do hear from Elizabeth, we have become very close friends. I was so fortunate to meet her and her husband last October. They vacationed for a few days at Yellowstone then drove down here to meet us. They spent the night, I cooked a big meal and we all got along so well. She is as warm and gracious as her posts indicated. We e-mail and talk on the phone at least once a week. She is an amazing person, she volunteers for The Make a Wish Foundation, she attends a cancer support group and currently is helping a single woman with no close family to her chemo and doctor appointments. She is such a selfless person.
You are in my thought sweetie, you have had enough rough times. Sending plenty of love.
I hope everyone else is doing well. I am tired today, too tired to write a long post but you ladies are always, forever in my heart.
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Hi Janis, Just us today??
guess people are still reading my way-too-long posts.
I am glad to hear Elizabeth is doing well.
I do not feel I've had a bad time lately...it's all emotional stuff. I am pretty healthy (just getting older, I guess) and my job is still there for me.
I get melancholy now that the kids are so far...but I know I am blessed and I am grateful.
It's the week end!
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Hey Joan and Janis I'm here .I've been so tired and not myself today I don't know what's wrong. I think maybe the Tamoxofin is making me so tired.I just opened a new bottle of Tamoxofin today but it's the same manufacturer. I thought I was going to pass out at one point so my mother who just happened to be there told me to go lay down and even took my BP .It was fine.
Maybe I just needed to drink some coffee.It did perk me up and I felt much better this evening.0 -
Joan, thank you for your kind and caring words. I so understand being alone with a grandchild and feeling so lonely as everyone else leaves for a vacation. It is a daunting feeling. Be sure to write to us for company, love and support. That is tough duty in a lot of ways. The loneliness is the worst of it, and the strange new place. It gets harder for us at our age to rest easy with all of it.
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Kate, isn't this the day you see your onc? Many good wishes for moving forward most effectively with the urologist puzzle.
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Brookside thanks for remembering. Yes I see my MO this afternoon. I have an appointment with that urologist Mon. Sept. 30. Today I am hoping to end my chemo treatments, and get an appointment for CT scans next week then see my MO again Oct 4 to find out results of CT scans and see what to do about surgery.
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