Radiation recovery
Comments
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Thanks Brookside, we did have a great time and I will try to remember your tips about dealing with my managers.
Kate thanks for the Anniversary wishes.Hope your able to find some relief soon for your bowel problems.Have you seen a GI specialist ?0 -
I have an appointment with A GI specialist Oct. 14. after that doctor finds out what is causing my partial obstruction my doctors will decide on either a tranurethral resection surgery or radiation. I am praying for surgery. I despise the thought of traipsing to the hospital 5 days a week for 6 weeks or so
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Hi y'all
Josie - Happy Anniversary! Sounds lime a good weekend
hope work is better this week...calm easy no drama no tension...everyone act medium.
SAB - happy dd
4 wheels! Yippee! Glad the new position is going well...nothing like jumping into the fire...s'mores please
Kate - glad you got some answers...and new glamour do! Hope your blockage eases...and the nodes get the memo...shrink! Post a pic of the new do:)
Sew - breathe! We are in your pocket...munching cakeballs sipping wine and (((hugs)))!
Bunkie - little steps you are getting those steroids out of your system. Hope you get answers to the adrenal glands soon...sending good thoughts!
RunFree reindeer...ha! Rash itch fade away!
PT for LE went well today ! Trunk LE...wishing and hoping the 3rd girl will go away! Want LE gone by November mamo!
Hubby's blood sugar....drumroll 139 30 day avg...we are getting there! Hope we don't kill each other in the process...I need a vacation! Joan road trip!
Brookside, Janis, Susan, GiGil, y'all my mind is zapped ... shout outs!...
(((Hugs)))
Cindy0 -
Kate, I'm so glad you have an appointment to look into the obstruction, and I think otherwise the uro today gave you sort of good news, right, by keeping the resection as an option? I hope that's true. You must be so uncomfortable with the obstruction. Seems like a long time to wait to be seen for it.
Josie, I hate it that these people are ganging up on you and you don't seem to have anyone who will listen to this from your point of view. There's nobody higher up, is there? They wouldn't openly take your side against your immediate supervisor, but they might be able to mediate a meeting where you lay out how you're being given an impossible task and you all need to troubleshoot how the work will get done, without bringing up that you fear you're being deliberately set up to fail. Perhaps I'm dreaming and there's nobody you can turn to. I hope this gets better somehow or you find a job where you're not swimming upstream. That kind of stress is not good for anyone.
SAB, thanks for the explanation about your job. I have heard that Admissions is just crazy at certain times of the year. I guess you just buckle up and power through it, for now.
I went back to the derm today. He laughed when I asked if he'd been at the World Congress of Itch and said he was actually at a pediatric dermatology conference in Madrid. Nice gig! He was pleased that the cream is working so well, but he did a biopsy anyway. I am kind of a fainter so he had a nurse come in and they let me lie down on my side, which was surprisingly relaxing. Little needle for the anesthesia and that was the last thing my leg felt in that spot--it was honestly painless, even when he took stitches. I was hugely relieved. I have to go back next Monday to have the stitches removed and hear about the path results. He thinks it could help narrow down the possibilities. He started talking about fleas again when I showed him how the spots are in a row. He said fleas always eat in threes, breakfast lunch and dinner. He quizzed me about whether we could have fleas in the house or car or somewhere else. I just can't see it, especially now that the spots are spreading. I asked about shingles and lymphoma and he said no to both of those, although he said lymphoma (there's a kind that presents with an itchy rash) is very hard to diagnose and would require multiple biopsies over time, plus it's rare. I am going to keep going with the cream but stop the Bactrim. He didn't say not to take my last four pills, so I guess I will, but we're not doing another course.
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Running reindeer....the mystery continues...I'm glad he took the biopsy.
Cindy, keep up the massage on that old dog ear....it will go down....mine did. Takes awhile though....perhaps you could learn a new massaging dance and dance the LE away?0 -
(((Jodi))) I've had a crappy boss before and I'm sorry you are going through this.
Brookside you always give good advice. Josie should document and communicate in writing.
Kate I hope all goes well and you get a green light on surgery. In your pocket for the specialist.
Cindy glad hubby is behaving!
Runfree reindeer it would be wonderful if this self resolved but glad the biopsy was painless. More info can only be good.
Take care all.0 -
Ladies- just a quick question as I just finished up last Thursday. My skin has turned a deep purplish red now and very tender which I know is common but how soon will I see it start to fade a little . Because mine was the mid collar bone node area my neck is really effected and pretty obvious. I guess when it is less tender I could cover w/some make up. Right now I have just aloe and vit E. My CT scan tomorrow so just want to do a really good deep breath. Wish me luck.
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Cindy, Runfree, and Sab thanks so much for the support
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Grammy, fingers crossed on your scan today....I'm hoping you'll breeze thru it with flying colors. As far as the skin, I would suggest keep using the aloe 3 to 4 times a day, and get some calendula cream (maker Boiron sold by Amazon or whole food stores). It's a natural ingredient and does wonders for burns (and diaper rash if you've got little grands still,). I loved it. the bad rash burns probably won't last much longer than a week, but the redness and or extra tans marks may take months to fade. turtleneck tops? Scarves? Just a big smile wearing your battle scars bravely?
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Grammy, did up an old photo of Gloria Vanderbilt. She always wore some sort of turtleneck or ruff or many-stranded choker. She was a fashion icon, of course, as will you be. On the other hand, perhaps you've always dreamed of becoming a redneck? Here's your chance.
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RunFree, such good news! I'm glad the biopsy is done, so maybe you'll have some answers. The part about the stitches really surprised me--after all the core needle biopsies, MRI biopsies, and needle localizations we've all gone through, the concept of an incision with needlework was the last thing on my mind. I'd just imagined a delightful punch pattern--the little dipper, perhaps?
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I have definitely decided that I will refuse radiation for a treatment plan. I am modest, and I don't care for technicians. If the radiation oncologist was going to give me the treatments it would be one thing, but all he does is set everything up. So I refuse to be naked on a table for technicians to set me up. Not to mention having to traipse back and for to the hospital 5 days a week for 5 to 7 weeks. Not to mention the side effects of exhaustion, nausea, diarrhea, and bladder isssues. So after I see the GI specialist, and find out what wrong with me regarding a partial obstructioin the only treatment I will agree to is surgery. I just emailed doc and told him that 99.99% I will refuse radiation, and he won't be happy about that. He keeps telling me he needs to have a tough love conversation with me. I know he wants to extend my life, but if he can't cure my cancer I would rather go soon as opposed to enduring more aggravating procedures. A close friend of mind died Sat.suddenly in her home. I am guessing she had a heart attack. After feeling bad that she was gone, I thought how blessed she was to not have to suffer.
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Kate, did they tell you that you'd definitely have to be naked during radiation? Would it make a difference if you knew you'd have female technicians? You did get through childbirth (right? I think so). Just wondering. Of course it's your call. I'm sorry to hear about your friend. I get why you would have that thought, that she was lucky to go so fast, I mean I get why anyone would. Sending you hugs and positive vibes--hope you and your doctors can come to a meeting of the minds.
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Funny Brookside! I wasn't looking, but I think he just took out one little bit of tissue. No pretty constellations for me! Just two stitches. They ache a little, but really it's tiny. Also I'm feeling so much better which is really great. I got a friend to go with me to the derm yesterday, and we went out to a great restaurant afterwards and she bought me dinner! She said it was for my birthday. I thought that was wildly unfair to her because she took a huge chunk of time out of her busy day to come with me--I had been planning to buy HER dinner. Sweet friends are priceless.
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Hi friends,
I just read what I missed while away...and you made me laugh and cry...happy...sad...that's who we are some days.
I had a wonderful 4 days in southern Colorado staying with our friends in the aspens and pines at 9,000 feet...and we took a side trip to Taos, NM...I love to go where I've never been.
It was a lot of work to get there...was up until 2:30 AM packing (after getting home at 10PM from work)...slept one hour, then up by 4:00 AM to drive to airport. Arrived early in Denver then drove 4 hours to meet friends...we talked, ate too much, walked in the first snow, ate more, sat by the woodstove...and toured their new geodesic dome greenhouse stocked with fresh tomotoes, and herbs. We "stalked" elk at dusk and listened to the bugle calls. Bathrobes and tea on the deck, and catching up on everything....Dee and I saw the same shooting star -- that never happens! The aspens still green; too warm for gold. Still beautiful (right, Janis?)
It was over too soon and I drove the 4 hours back to Denver... took a red-eye at 1:00AM...got in at 7AM (slept through landing)...bus to other NY airport where we left our car...drove east in rush hour...DH dropped me at my office at 10AM and I worked through to 8 PM. Home...sleep...now recovered.
Every time, we say "no more red-eye flights...we are too old!"
It was crazy; but I am glad we went.
Will catch up later...my thoughts and prayers with with you for your needs...there are many.
Love and hugs...0 -
Runfree sure I got through chikld birth, but I did not have to go to the hospital 5 days a week for 7 weeks. Female technicians would not make a difference. I am 100% against radiation. I don't want to suffer. I want surgery it is much easier
Joan I am glad you had a nice trip and Runfree I am glad you enjoyed a nice dinner.
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Oh Joan that sounds wonderful! I'm glad you are squeezing some "adventuring" into life.
Grammy, we are all different but my redness faded fast. like Sew, my tan lasted a couple of months. I also loved the Boiron. Fingers crossed for scans...let us know!
Kate, Kate, Kate.Tell us that you will at least hear your Dr out, and then make your own decision. So sorry about your friend.0 -
Kate I'm so sorry to hear about your friend.
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Hi Katehudson25,
I have not posted here for a while. I hope you and your doctor will come to an agreement to do the best thing for you. If you do surgery, do you have someone to help you at home when you are recovering? Will radiation cause more pain than surgery? I am sorry I did not keep up with this forum. The last time I remember you were doing chemo. I wish you the best and hope you will choose the best decision.
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I just spent the evening at the ER with my son.He had blood in his urine .Apparently he had had burning for the past 2 weeks.He told me today about that.Well the pediatrician wanted a CT scan of the kidneys to rule out kidney stones.Just a bad Urinary tract infection though.They did put a IV in and gave him a whole liter of fluids.He definitely had to go after that.That was the goal.They didn't act like they were even going to do the CT scan until the pediatrician called the ER and insisted they do it.I swear if we had had the 250 to pay the Co pay they may have treated us differently.I know we owe them a lot but they Shouldnt treat us any differently.
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Kate sorry you are having more challenges. hope you find some peace of mind soon. Run, bravo to you for getting your situation looked into and biopsied. Hugs to you SEW and your SIL. Janis, thinking of you. I have been trying to wean off the small dose of xanax I have been taking since my diagnosis. I have tried to do it slowly, but it is not easy to give up something that has given me some peaceful moments when that seemed impossible. I have only taken one of the lowest dose tablets once a day divided into two doses, but it has helped. My dad has to have a transfusion again tomorrow, but his WBC has gone up, and that is a good thing. Joan, so glad you had a good trip, although it sounds like you have some sleep to catch up on. Josie, happy anniversary. Your husband is a thoughtful man. SAB I had the joy of giving my daughter and two sons each a car over the years. What a kick it is. So glad you were able to do that. Hi to Cindy, Bunkie, Brookside, truebff, and everyone. Keeping everyone in my thoughts and prayers.
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Sab, Josie, new2bc, and Gigil thanks for the support. New2bc if I have surgery I do have someone who could help me at home. Radiation isn't more painful than surgery it is just more aggravation and takes longer to accomplish.
I have an appointment with my MO Friday to discuss this. We both agree that I should find out what is causing my partial obstruction first. I will see the GI doc Oct 14. I am going to tell doc I want to see my regular oncologist who wants to do a partial bladder removal along with removing lymph nodes. I just don't understand why the 2nd opinion urologist and my MO want me to do radiation. Surgery will remove the tumor and radiation will only shrink it.
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correction: Instead of I want to see my regular oncologist it should read I want to see my regular urologist
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Kate, have you asked your MO and your urologist #2 why they recommend radiation, or are disinclined toward surgery? Sometimes the "why" is so important in helping you figure out your path.
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Josie, how is your son doing? Nothing more miserable than a UTI. Have you thought of maybe using a probiotic with him? It is supposed to help with so many things. I use Culturelle in the yellow box and it has made all of the difference in the number of UTI's I get. I also use cranberry chews every day. If the infections or irritations persist, I use d-mannose dissolved in a small amount of water. The d-mannose is cranberry sugar and the bacteria are just crazy about it. They attach to the d-mannose, and are urinated out. These things have been a lifesaver for me.
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Brookside my Mo thinks my partial obstruction is being caused by a lymph node, and for this he thinks radiation is more beneficial. My 2nd opinion urologist thinks my obstruction has nothing to do with a lymph node. He thinks there are less risks with radiation. I am going to the Gi doctor first and see what is causing this obstruction, and see what to do from there, but I am pretty much against radiation. I don't want to lay on a table exposed while technicians postion me for 35 days. Not to mention the side effects. Surgery is much easier for me.
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Kate, when I had rads, my techs kept me covered as much as they could. It sounds like you didn't have that same experience. By the end, I was just not self conscious at all, it it was my own comfort. I have always been so reserved, but I kind of lost that. I ended up liking my techs very much. They talked to me about everyday things while they worked, and that helped. A friend of mind who had rads for esophageal cancer told me to be sure just to concentrate on everyday matters, and I took his advice. It helped and I was grateful for that advice. Just some thoughts.
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Hi y'all
Kate - hope you receive clear answers on Friday. Such difficult choices...ugh! So sorry about your friend. I've been see a accupanturist for LE...would PT or such help the blockage? Maybe wishful thinking ...Brookside is right the why is important in understanding your options.
Josie - ugh your poor son...UTI is not fun:( hope he's feeling better soon. Hoping this work week is better too!
GiGil - your dad is amazing and so fortunate to have you caring for him!
Hubby's blood sugar is staying within range yippee! I had my 2nd acupuncture appt & tomorrow is 2nd PT gonna work this 3rd girl out!
Shouts to the gang! SAB Sew new2bc Janis Grammy Bunkie truebff Joan ...:)
(((Hugs)))
Cindy0 -
Kate, so sorry to hear about the loss of your friend. It must be very difficult.
I do hope you can find some common ground and meeting of the minds during your appointment. it would be good if you have choices that work for you. I am sending hug, prayers and positive thoughts your way.
Sew, it's hard to believe how much you have been through since we met in May. At that time, it seemed that BC and SEs were enough to be dealing with. It will take time for all of this to sink in...I am thinking of you and your family as you work through the grief and shock of all that has happened.
SAB, it had to be great fun to surprise DD...you did it! How are you managing with the job? I always wonder how I get anything done while working...some days I just want to do nothing at all. Do you work year round...do you get time off when there are breaks? It sounds like you are in an area that is busy year round. I hope you are enjoying the challenge. How is DD the younger dealing with your new schedule?
Josie, what next?? Am thinking of you and your son...what a scare. I hope he is better. About your job...if i remember, they cut you back from full time; now it sounds like they expect a full time performance. They should hire you back full time and let you do your best work.
Gigi, I hope your dad is comfortable. It is a blessing that you can be his rock...I know the time you have together is precious. I hope you can accomplish your goals with the meds. I use that drug, half at a time, only as needed. It knocks me out...but it does work. If I didn't have to go to work daily, I'd probably use more.
How is Cole recuperating? Has he been able to return to a more normal routine?
Run, I think it is great that you are finally being followed and that you will have the biopsies. It is a mystery but there is a cause and I hope it is uncovered. Meanwhile, glad to hear you are less itchy.
Hugs all around...Cindy Janis Bunkie Brookside...hey April, you there?0 -
Gigil,
I take cranberry pills every day. This has helped me be able to add more supplements to my diet. Before, my bladder would get irritated when I took vitamins since I had or have cystitis. I took melatonin 3mg for the first time last night. If you have problems with sleeping, consider melatonin because it not only helps with sleep, it also prevents a recurrence. I am glad your dad is doing better.
Kate,
I hope you will get all the answers from your doctors to make the right decision. Hang in there!
I have one question to ask anyone who knows. If I want to test my hormones to see if I am estrogen dominant, can the oncologist do this test? I need to give my blood next week at his office so I wanted to see if this can be done at the same time. Or should I do the saliva test? I have been on tamoxifen for a few months and I wanted to see my hormone levels.
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