Class of 2009 - Sisters in the same time frame
Comments
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Jen, good news...
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Jen I totally understand the fear of the swollen and unusual lymph nodes. There was a time for a long time, after I had Hodgkins disease that every little lymph node that popped up on me or my children I was running to the doctor to get it checked out. Eventually over time and with a lot of doctors reassurance I finally stopped running so much, but it took a VERY long time and I was just starting to stop the running when I was dx with BC. On any level I am glad yours was only TMJ, which I know is painful because I have it. Yuck!!! I don't have as many probs with it as I use to since I wore braces several yrs ago.
Take Care Renee
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Pam, I'm so sorry that you have Parkinson's but I agree with Renee make sure you have a good neurologist. I like Michele love Michael J. Fox, he has written books, spoke to Congress and has done a lot to move research and a cure for Parkinson's. I've see such positive forward progress for this in just the past year! I like you have always been embarrassed about my medical problems, also worrying how many people will be there for the long haul. Pam, I hope you know all of us women here will be there for you as long as were here on Earth. I know that this might sound strange but I listen to Dr. Andrew Weil's "Sound Body Sound Mind". It's music that has been produced to call the central nervous system. It has worked for me I don't know if it will for you, it's $9.95 at Borders and can be downloaded on ITunes. Its the black and white photo of Dr. Weil. Only one I felt really works. I wish I could give you something more than words or hope, I wish I lived closer so that I could help clean or drive you somewhere or do something else. But all I can give you is my love and words along with prayers. Take Care Pam
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Ladies, Thank you all for your support. I've put me on a back burner for awhile, my infusion mate had her scan and has affected lymph's around her liver, spleen, kidneys etc. So my time as much as I can is helping her and supporting her with her news and where and what is next. It's hard because she is triple negative. She is such a wonderful woman and like all of you cares so much about everyone. She guided me through so much at the Cancer Center. I always thinks God sends people into our path for us to learn, but also to help when they can't carry the burden. It has helped me to put my problems aside to help another to try and live and recover.
Love to you all.
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M360: I'm so sorry to hear about your friend. I hope her docs can find an effective treatment plan that allows her to recover and carry on living in good health. I'm sure she appreciates your help and support -- what a lovely opportunity to trade those treasures!0
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M360 - ugh sorry about your infusion buddy's new diagnosis. I am glad she has you...
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Pam - I'm sorry to hear about your Parkinson's diagnosis. It's always something. My Mom had a good friend with Parkinson's, she was my Mom's swimming instructor and she was a realtor. Two jobs that take a lot of energy and vigor. The Parkinson's didn't get her down and I'm sure you'll have the strength to see it through too!
Juannelle - I'm getting fitted for a sleeve this week too. We're flying to WA for Thanksgiving and it didn't dawn on me that I needed one until I read some other LE threads. It's a scary thing and I want to do all I can to prevent it. As much as I want to get on with my life and not think about *cancer*, it seems it will be a life-long companion and I have to learn to live with the unwelcome guest.
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Maybe I'm out of the loop...why do we need a sleeve if we're going to fly, if you don't have LE? I'm flying from TX to NY for Thanksgiving...do I need to worry?
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Shelby, everyone has recommended a sleeve for flying, even if you do not have LE. I think it has to do with the change in pressure. For the correct info so out to one of the LE threads and look around or ask the question. That is where I read my information. The Navigator at my Onc office also suggested this. It is just to be on the safe side. You will need a prescription, shouldn't be a problem. The company that I am going to said that it would take about a week to get it in,once it is ordered.
Theresa, I have not had any problems with LE, and I want to make sure that I have done everything possible not to have a problem. My Onc said that I should never have a problem because they only took out a couple of lymph nodes, but talk to Jen, she only had a few also. We just have to do what is right for us.
M360, you are an amazing woman. You have so many problems of your own, but you are so willing to give yourself to others. I am in awe of you.
Pam, hope things are going well for you. I know you are still trying to absorb the news. We are all thinking of you.
Love to all you wonderful women,
Juannelle
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I read about LE on other threads, asked around, then called my PE. She said for me to definitely get the sleeve as preventative. They will send in the prescription to the physical therapist who will fit me for the sleeve.
I'm a "better safe than sorry" kind of gal.
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Oh great, now I have to get a sleeve. Do you think I can bedazzle one to make it pretty. Will I make Airport security go crazy?
M360, sorry about your friend. She is lucky to have you.
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Michele- I heard of a website called lympheDIVAS, and they have sleevs and gauntlets in awesome loud colors and patterns. Anyone who needs one, check them out!
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Juzo makes one called the dream sleeve. They are just solid colors.
http://www.thepinkbra.com/2002ds.html
LympheDivias sell some that have patterns, crystals, and solid colors.
http://store.lymphedivas.com/store/pc/viewCategories.asp?idCategory=25
I am new to this and I would love to try one of the pattern ones.
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Ladies,
The gauntlets didn't work for me because it caused too much swelling in my hand. So I have Jobe over the shoulder arm and a Jobe hand.
However I was told by a Lymphedema Specialist I had so much swelling going up across shoulder and in my upper back to my neck. She said I needed a specialized total body garment. They cost a fortune so she told me to check into sporting goods garment for athletes. I did and I am so happy about it. I got a SKIN, it's a long sleeve shirt worn by bicyclist that heals your muscles and keeps the body from swelling and wicks heat and cold off the body. I love it if I go to do any yard work, or when I drive off the mountain. I found just driving into the city from living at such a high altitude caused a lot of swelling from the change. This is why I think the specialist thought wow so much swelling I couldn't figure out why when I driving there it was out of control. It was altitude changes. What was great is I got a sale on the SKIN shirts at a bicycle shop, two cost less than my Jobe hand, plus it does a better job of controlling swelling and pain. Hope this helps any of you ladies who are suffering from lymphedema.
Plus I have found that if I watch the morning news and evening news and bounce on my exercise ball it helps the lymph system and then I don't have swelling. Also the jacuzzi!
Hoping all you ladies a pain free and healthy week.
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I have a question for anyone dealing with bladder issues. I had bladder infection , took drs meds came back 1 week after meds were done. Got on sulfur based meds and it went away. Now about 2 weeks later i have this weird feeling when I need to pee. Its kind of like when you hold it a long time then are finally able to go...does not hurt or burn just uncomfortable, like a sore muscle. Has anyone delt with anything like this after cancer? I'm sure Im just overreacting, as I usually do with anything different then the norm. But after all this there isnt really any sort of norm. I also find that I can only sleep about 5 hours before my back and hips start to ache. I know I need to lose weight and get back on an exercise program, That WILL make me feel better! But unfortunatly this whole ordeal has been stressful and I unfortunatly am a stress eater. Damn! Any help appreciated
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Dualgate, Sorry I can't give any advice on the bladder thing. I have been having a yeast itch thing going on since last year. I think we have narrowed it down to hormones out of whack. This is the place to come and get some answers/advice. Welcome.
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Dulgate,
If you took Taxotere or Cytoxan both can cause the feelings you are describing for up to a year after treatment. When I had that feeling I drank four or five extra glasses of water and the feeling stopped. I had it explained by my doctor that the bladder retains the chemo you need to flush it out. It also weakens the bladder which I assume could add to more bladder infections?!
I hope you feel better soon.
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m360, I guess that could explaine it but I didnt have chemo, just lumpectomy and rads with Tamoxifen for 5 years . Ive been on Tamoxifen for 8 months now. I got to thinking about the back problems and think maybe it might be the mattress too. Getting old so maybe thats it. but will still check with dr. when I go in . Thanks for you thoughts though, Jamie
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Michelle, I don't know what to think, Hormones being out of wack, I guess that could contribute to. seems like so many things change and we get so worried what it might be, as you can see by the fact Im up and on this board at 2 in the morning when I have to get up at 5!!Crazy but I just worry. Thanks for your info, Jamie
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Thanks M360. I have had problems since chemo. No infections, just problems voiding. My bladder has to get really full before I know I have to go now or I feel like I have to go but I can't.
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Dualgate- my orthopedic doctor, GP and dentist have all told me the same thing. After chemo/radiation your nerves, veins and bones will never be quite the same. Do you think that perhaps the nerves that tell you to go tinkle are sensitive? I myself find that I have to try a little harder to really completely empty my bladder. I don't know if just radiation would do this but I feel certain chemo. is part of my problem.
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Pauldingmom, I guess that could be, but do you think it would affect my bladder when I was only treated through left breast and armpit? Im so unsure about all this. I did not do chemo though so I know it cant be from that.
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Michele ~ I am with you on the itching.... grrrr damn' tamoxifen !!!
I have nothing wrong with my bladder so I am of no help with that. I drink water all day.
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Dualgate-Welcome and I am sorry I don't have any advice for you on the bladder issue. I have had the same treatment as you, and no bladdre issues here. Good luck. I too drink a lot of water, so maybe try that.
I go tonight and start on more PT for my lovely hand. It is so swollen after this weekend that I can't wait to get my PT started. However, I am a little apprehensive about getting wrapped again. Not looking forward to possibly having to wear a plastic bag in the shower again. But, we'll see!
Hope you all are having a beautiful day!
Jen
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Jen,
I would like to know how your PT is going for your hand. My daughter does lymph massage and I wear my arm and hand and even my SKIN shirt, but just a little bit or more use of the left arm or hand and I look like a blow up toy in that hand and arm. When it happens I bounce and bounce, massage then jacuzzi. Is this going to be my m. o. the rest of my life?! PT didn't work for me at all, they told me the best group was in San Francisco, but it's the only one in the whole city so I don't feel it's the best, they don't even have a Lymphedema Specialist at UCSF. This whole swelling I feel is worse than the cancer itself. We can rid ourselves of the cancer but Lymphedema is with us for life. Good luck and I hope things get better.
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M360- I started PT last night for my hand and she did an evaluation on me and measured. Most of the swelling is in my hand and forearm. But, she had to wrap me all the way up my arm bacause she doesn't want the fluid settling in my upper arm. So, needless to say, I amright back where I was 8 months ago with all of this. Wrapped from my fingertips to my armpit, and not happy. I am actually in a bit of a depression today, not sure if it is due to the hurrcane like weather we are having or because I look like I am part mummy. Sorry if I seem to be a downer today, but I am not feeling happy. I knew this was coming with this PT appointment, but all the feelings didn't start coming back until she was wrapping me.
I am just being a baby I guess. But you hit it on the head M360- we can get rid of the cancer, but the LE stays around forever. It is a constant reminder of what we battled. Should I be proud of this and be tough or be upset and down about it. I guess as the years go on, I will get more used to it, I am only 1 year in to this whole journey, I still have a lot of things to look forward to.
Hugs
Jen
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surgery went well. Sore, groggy but glad to be home. Dr. didn't think anything look abmornal when he looked around. Of coures we have to wait on the pathology report for the ovaries and all the other parts he took. Chemo has yet again changed my body. I had an allergic reaction to cipro. So I got bendaryl to clear that up and versed not long after that. I don't remember leaving the pre op room. My next memories are waking up in the recovery room.
Hope everybody has a great week.
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Bless you, Kittydog. It is so cruel that you have to go through this too. ((HUGS))
Pam
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Kitty, I hope you are feeling a bit better. Be sure to take good care of yourself.
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Glad to hear KittyCat. Enjoy your time to rest and take good care of yourself.
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