Having a bad week

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Having a bad week

Postby Joanie60 » Fri Apr 04, 2014 5:28 am

Hi guys,

I always know I am in good company when I cannot sleep!! I wish I could blame my sleeplessness on RLS/WED. And of course, that is what GOT me out of bed. But what is keeping me out of bed is my battle with cancer. I just feel like whining and I know how patient all of you are.

At the end of Jan, I had a shave biopsy of a scar from a removal of a bad mole 2 years ago. I had melanoma in 2000 so my dermo cuts off everything that looks halfway suspicious. The scar didn't even look suspicious and she debated several times about shaving it off, finally did. Thank heavens. It came back positive for melanoma.

Surgical oncologist removed a chunk of my chest, leaving a 7" scar, and 4 lymph nodes. Excellent news: lymph nodes clear. Not so good news: margins of excision were NOT clear. So I go back in next Monday to have re-excision

In the mean time, GYN has been following some cysts in my left breast, I've been getting mammograms and ultrasounds every six months for last 18 months. Forgot to get it this go around cause of the melanoma drama. Got reminded, had ultrasound of left breast on Monday. That led to MRI of both breasts today with STAT request for reading them. Got call this afternoon that I need a MRI-guided biopsy of RIGHT breast asap. Well, damn!!

The good news is that my husband has been my rock. He has been beyond awesome. But my whiney inner child says: isn't RLS/WED enough of a burden to bear? Gotta throw cancer on top of that? Then another potential, totally unrelated cancer on top of that???

I'm sad and scared. But reading posts on this board reminds me that so many of us cope with life, carrying the burden of lack of sleep, lack of understanding of friends and loved ones, lack of understanding of docs (although I have the best doc ever for RLS), and the love and caring and support of this community tops anything I have ever witnessed.

So, whine over. Just wanted to get it off my chest. And next Monday, hope to have all the melanoma off my chest tooooooooo. Gotta figure out this biopsy thing for breast and then follow that path wherever it goes.

Thanks for listening dear friends.

Joanie :shock:

ViewsAskew
Moderator
Posts: 15761
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Having a bad week

Postby ViewsAskew » Fri Apr 04, 2014 9:07 am

My goodness, Joanie. You can whine all you want! I'd be doing more than whining!

Sometimes things just aren't fair, are they? And this is definitely one of those times! Thank goodness you have your husband.

Keep us informed of the results. And, thanks for the post. It helped me put my silly back spasms in perspective :-). Not that, of course, your post was about me, lol!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Having a bad week

Postby Joanie60 » Fri Apr 04, 2014 11:38 am

That's what I am talking about Ann!! Your post made me giggle. I will keep you posted~thanks for caring :-)

Polar Bear
Moderator
Posts: 7592
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Having a bad week

Postby Polar Bear » Fri Apr 04, 2014 8:22 pm

Joanie, as Ann has said..... it's a post like yours that puts things into perspective. Of course we all hate our WED/RLS and when we are stamping our feet and walking walking... then it's the worst thing ever. And at that particular moment .. it indeed is the worst thing ever. But we do need to know and be reminded sometimes, that yes, things really could be worse.

It's hard to find the right words to say... when you are waiting to have tests done, and then waiting on the results, it is soooooooooooo hard.
For you to be able to say that your husband is a rock is such a blessing.... tell him we said hello :)

And know that we are holding your hand.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Having a bad week

Postby Joanie60 » Fri Apr 04, 2014 8:28 pm

Thank you thank you thank you.

Melanoma surgery Monday. Meeting with breast surgeon next Wednesday. That will take my mind off the melanoma path results I'll be awaiting haha

One thing I'll say for RLS sufferers, we are a hardy and loving bunch!! Thanks so much Polar Bear :-)

ViewsAskew
Moderator
Posts: 15761
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Having a bad week

Postby ViewsAskew » Fri Apr 04, 2014 9:41 pm

Glad it's moving along at a fair clip - that's a good thing.

How long before you'll know about the melanoma? I had a mole that looked a bit funny (so said my friend as we stood in a dressing room while clotheshipping - it was on my back and I couldn't see it). I went to the skin doctor for another reason and as an afterthought asked her to look at it. Her reaction let me know that it was potentially very serious. The mole was smaller than an apple seed in diameter - she had to cut a 4-5 inch incision to remove all the tentacles. I sort of knew based on what happened when she removed it that it was a bad mole, but I think it was at least a week before she called with the results. Thankfully, the margins were clean and all was well. But, it was a very long week.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Having a bad week

Postby Joanie60 » Fri Apr 04, 2014 9:52 pm

The last path report took one week (to find out they did not get the margins clear). So I expect I will hear April 14 or thereabouts. My oncologist does not call you with results. He schedules a follow up (take out stitches, etc) and gives them to you then. I like that system. By the 14th, I am sure I will have the breast biopsy scheduled so I can flip my brain every which way but loose with worry, or I can just turn it over and let it play out..... I am hoping for door number 2 lol

ViewsAskew
Moderator
Posts: 15761
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Having a bad week

Postby ViewsAskew » Sat Apr 05, 2014 4:13 am

Sounds like a perfect time to practice some meditation if the WED symptoms will stay quiet. That works pretty well for me.

Actually, if you haven't tried this you might want to give EFT a try. I haven't a clue how it works - but it does help me. I often can't tell how much better I feel right after, but within an hour or so, I realize I'm not stuck in that repeating loop of anxiety. http://www.emofree.com/eft-tutorial/eft ... orial.html I really like that you can do it just about anywhere - it looks a bit weird, but, hey. I actually used it recently at the doctor's office when I was very concerned about something and my blood pressure was very high. After a few rounds of it they took my blood pressure again and it was down quite a bit.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Having a bad week

Postby Joanie60 » Sat Apr 05, 2014 1:26 pm

I rely a lot on meditation. Thanks for the link, I will check it out!!

Joanie

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Having a bad week

Postby Joanie60 » Tue Apr 08, 2014 12:14 am

Made it through second melanoma surgery today! I'll find out if margins are clear by Friday or early next week. Breast Consult this Wednesday.

Feeling a little better now, my husband and I had a great carefree weekend and I think that put me in a good place mentally for this week :-)

Had a terrible RLS night last night but I think with the pain meds I am on now, I should have smooth sailing tonight haha

Thanks again for all the loving support :P

Polar Bear
Moderator
Posts: 7592
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Having a bad week

Postby Polar Bear » Tue Apr 08, 2014 12:22 am

Joanie, you are going through what we all fear, in one way or another.

it's lovely to hear that you had a great weekend and hope that tonight is more peaceful for you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 15761
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Having a bad week

Postby ViewsAskew » Tue Apr 08, 2014 5:53 pm

We're all hoping for good news.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 5303
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Having a bad week

Postby badnights » Mon Apr 21, 2014 12:30 am

Hope you're not posting because all is well, joanie.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Having a bad week

Postby Joanie60 » Mon Apr 21, 2014 12:49 am

Actually, Ive been doing the oncology run-around!! It has been a mess. My melanoma margins are clear (yay!!) but second oncologist and radiologist disagreed on what type of breast biopsy to do (ultrasound or MRI). So after a lot of miscommunication (which has been tracked, I believe, to a secretary who was trying to help, but NOT), I had a mammo and ultrasound of my right breast last week. There is something found on ultrasound but not sure it is same mass as found on MRI. So Radiologist wins! I am having an MRI guided biopsy this Wednesday April 23 at 2:30. Then I guess we'll deal with ultrasound results later. The lump is a BI-RAD 4B if that means anything to you guys. As I understand, I have approximately an 80% chance of benign finding but my head and my heart aren't communicating too well right now.

All I want to do is sleep or lay on sofa. Glad I have a stash of meds for RLS cause I have been using them!! It has been a really stressful month, well, actually stressful couple of months. I want information, and I should get it soon!! This waiting and wondering is not good for my mental health.

Thanks for checking in on me Beth, made my night!!

Hugs to you all, Joanie

badnights
Moderator
Posts: 5303
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Having a bad week

Postby badnights » Mon Apr 21, 2014 1:54 am

Hugs to you!
You definitely need some down time! It would be really good for you to be able to kick back and not think of anything important for two whole days....
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


Return to “Everything Else...just no RLS/WED!”

Who is online

Users browsing this forum: No registered users and 1 guest