Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I am having laser breast cancer surgery (partial mastectomy/lumpectomy) Monday morning along with 2 follow-ups the next 2 days. My biggest concern is preventing a spread of the Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy, which any surgery or injury can do.
I am going into it having had a bad fall 3 weeks ago with a very severe ankle sprain with 4 ligament ruptures, muscle tears, plus an avulsion fracture---arghhh! So I am in a boot and on crutches. Good grief! That injury spread the horrible nerve pain condition (CRPS/RSD to my foot, unfortunately.
At least the surgery will put this chapter of the cancer saga behind me, although not the end of the story, of course.
I am awaiting the results of a full-body scan that I had on Thursday, due to stabbing pains that I have been having in my liver/gallbladder/back area for a while.
Prayers and good wishes gratefully accepted. Thank you!
I’m sorry I didn’t post about this any sooner, but I’ve been completely overwhelmed dealing with it all. Plus, I tend not to post about the really bad stuff here, as it’s so much more than most are going through here (not entirely true, other people go through a lot, too, but . . .).
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Certainly my prayers will be for you in the coming days, as always, you big klutz!
At least now you won't be able to stick that BIG foot in your mouth so often, eh? Just the little one, which at least will be an improvement.
Yes, I am trying to make you laugh. Hope it worked! if not, I'm in big trouble!
Although, now that I think about it... with the surgery and big foot too, I may be safe cause my bet is you can't run fast enough to catch me!
And listen to me pumpkin head... now that you've shared this and will have us thinking double time about you, please lettuce no how you are doing ASAP!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A lady just wrote to me- who is perfectly healthy and active- complaining she was stung by a wasp last week and how uncomfortable it was. It was her excuse for not writing to me sooner. ???
Ok.
I'm thinking it is a good thing she doesn't have your medical challenges to deal with. If she did, I might not hear from her for a year or two!
You are strong. MUCH stronger than most!
And we've been through much worse than this before, ain't we?
So I am sure after everything else you've dealt with that you will come out of this situation just fine.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Prayers Rumigirl. Take care of you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Prayers for you, Rumi! I do hope they go a great job of taking care of your needs. Tell them they will have to answer to LYMETOO if they don't !!
Please update us as possible.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
prayers for you...
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, I'm home, but have to travel again (@ 1 1/2 hours each way) the next 2 days for the follow ups.
I'm kind of freaked out by 2 things:
The there was another tumor below the one that we knew about from palapation and scans, it's "like and egg," and grew down on top of my pectoral muscle. So he had to scrape it off the pecs. That worries me.
He send it into pathology to see if he got all the margins. He will get the results in 5-7 days.
I didn't get the results of the full body scan yet. And the stabbing pain into my liver/gallbladder/back has been bad tonight. (I don't have a gallbladder anymore, thanks to Lyme & rocephin).
Now, with all the CRPS pain in both sides of my butt, my right hamstrings, right foot, and both hands---plus the breast surgery site & arm to be careful of and painful---there is no vaguely non-painful way to eat. Not sure about what sleeping position will work .
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posted
Wishing you all the best. Re sleeping position post surgery, I had to play around with that - I think I ended up sleeping sitting up with my head resting on a chair!
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Rumi!!!
Why why why didn't you give me a quick call sometime before the surgery? You know You can call me anytime, I'm serious, anytime, I always have my cellphone on & beside my bed.
I'm going to grab a bite to eat now. But if you don't call me tonight, I'm going to start to call you!!!
I'm just worried cause you know I love you as my sister.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm hanging in there. It's been tough with the long drive out the last 3 days for the surgery and the 2 follow-ups, plus drive home again.
I think that the PET/CT scan is ok outside of the known cancer in 1 breast, plus lung damage that showed up in an ER scan in February. The lung damage is surely from a lifetime of horrible bronchitis & pneumonia, plus a collapsed lung from an acupuncturist(!! I only found out what it was decades afterwards).
But I am waiting to hear from the oncologist's nurse to check that my reading of the results are accurate and if I need any further testing to make sure about the pain area.
It could be from musculoskeltal pain and/or Spincter of Oddi (hope not on that one!!).
Then, we're waiting to see about the pathology report on Friday or Tuesday. I pray that he got clean margins and I'm not looiking at any more surgery! We have another follow-up next Wedneday, right after he gets back from his "vacation" (ha, some vacation!) and is faced with a mountain of work. [My husband is the "he"].
Everything else is dealing with the pain from the surgery on topof the existing CRPS pain everywhere and the ankle/foot ruptures & fracture. There is no comfortable position for anything, sitting, eating, sleeping, anything. because there is no "good" side.
I woke up with a massive migraine today, too (gone now).
It is all so overwhelming. I'm exhausted beyond words, too, not surprisingly. So is my poor husband.
My husband was supposed to get a vacation for 12 days house-sitting for friends in their house on a lake. But he/we have had none of that at all. He's been taking me to non-stop medical appointments and doing everything to keep us going.
His health has been suffering increasingly over the years with all of this mess and his horribly stressful job. I"m worried about him, as he's crashing, too, as a result.
I got not one whiff of anything like summer, not even a tiny walk. That's been true for decades now.
Thank you, everyone!
sammy, I'm sorry that I haven't called, both about you & your mom, and about me. I've really been struggling mightily just to put one foot in front of the other (no pun intended).
[ 08-31-2017, 09:34 PM: Message edited by: Rumigirl ]
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, everyone. I'm muddling through. But the pain everywhere is awful!! There is no postition that isn't horribly painful. I'm now waking up (with not enough sleep) with terrible migraines and cramps everywhere from having so few choices
about positions and what part of my body I can use to get up or do anything. And many things i can't do at all yet, of course.
Sorry to be complaining----I've just had it!
I need to get more sleep, but need to get rid of this blasted migraine and pain everywhere first. Coffee enemas help that a lot, but that would wake me up more. Arghh! New model, please!
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posted
Oh My, Rumigirl. I was just scanning the threads and saw yours and clicked on it.
Will send prayers up for you. I know you will post with updates when you're able.
I know you've been on these forums long enough to know aboout LDN, but have you tried it for CRPS? It's probably been discussed but I just had to ask. Do you live in a state where you can get medical cannabis?
Again, I pray all goes well for you and you get delivered from all the suffering you are going through.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you everyone!
The wound is now infected (was for a while), in spite of starting Keflex yesterday. Have to go to the surgeon's now on the biggest traffic day---probably 2 hours at least each way. He may have to drain it. Lord have mercy!
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posted
No wonder you've been in "extra" pain! Prayers for you, Rumi!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
you are in my thoughts.
sending hugs and smooches to you and your hubbie.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you Lymetoo and randibear. Yes, both of us can use prayers, hugs & smooches!! My poor hubbie had a melt down today after a misunderstanding---not surprising at all; he was completely exhausted. as am I.
I'll write more tomorrow, but the pathology report from the surgery was NOT good. The margins are NOT clear. Meaning I need more surgery, either to go after the margins or a mastectomy.
And other features of the path report are not good; it's aggressive, etc.
I feel like I CAN'T face another blasted surgery on top of everything else, let alone a mastectomy---and with CRPS to boot! I've really had it.
We have to wait until the infection and drainage stops. Yesterday he had to take a culture of the drainage, try to drain it further, and put in another drain---all more needles into the incision.
I'm really discouraged and feel like this is all beyond the scope. Sigh.
Plus, i'm still having daily migraines, which may be party from the Keflex. I also have basically one position I can lie in, which is on my "bad" side for the CRPS, because the other side is the surgery site.
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by luvmycat: Oh My, Rumigirl. I was just scanning the threads and saw yours and clicked on it.
Will send prayers up for you. I know you will post with updates when you're able.
I know you've been on these forums long enough to know aboout LDN, but have you tried it for CRPS? It's probably been discussed but I just had to ask. Do you live in a state where you can get medical cannabis?
Again, I pray all goes well for you and you get delivered from all the suffering you are going through.
Thank you, luvmycat (cute name).
I have done LDN on and off for years, including since the cancer diagnosis, although I've never noticed any effects from it.
Yes, our state has medical cannibis, although very, very expensive and not too many kinds. The last part may get better with legislation; we'll see.
I do use some oral kinds, CBD and an oil. They do help with pain, although are not sufficient. I also don't dare take anything for pain when I have to go anywhere. My balance and perceptions are already completely compromised.
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Rumigirl
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posted
TC, thank you for your attempts at humor way above in the thread. Sorry, I wasn't in a humorous mood, which most certainly wasn't your fault.
One of the upsetting things about my last fall was that I actually collapsed on the subway steps. When I said that later, my hubby said, "Well, you don't know that," because it sounded so dramatic. But actually I do know it, sadly. I remember every last moment of the fall, when it was too late to do anythig about it.
This is the 7th bad fall I've had in a few years, 3 of them catastrophic in terms of damage done and spreading of the CRPS.
How the blazes are 2 people supposed to deal with this much??!!
[ 09-03-2017, 10:06 PM: Message edited by: Rumigirl ]
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randibear
Honored Contributor (10K+ posts)
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posted
crps huh? I'm familiar with that. had an arm injury and it hurt like heck. I couldn't sleep because of the burning pain.
my doc sent me to heavy physical therapy and it helped alot. eventually the pain stopped. thank heavens.
can you do therapy? course right now there's no way but it's a thought anyway.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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hiker53
Frequent Contributor (5K+ posts)
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posted
May the Lord hold you tight as you face these challenges. Strength to you and your hubby.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8885 | From Illinois | Registered: Aug 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you randibear and hiker. Wow, that's good, randibear, that you beat the CRPS with therapy!! I was misdiagnosed for so long that I haven't been able to beat it.
It started with a completely ruptured hamstring at the sitz bone from a horrible fall, and a much delayed diagnosis and very intense surgery.
I was doing physical therapy after the surgery, when the pain was through the roof, but the doctors kept saying I didn't have CRPS, even though I clearly did.
By the time they were willing to do the nerve blocks that can head it off, it was too late. Then, it's spread with 2 more horrible falls, including the last one in August. The condition is from h e double hockey sticks.
Thank you, both, and everyone else, too.
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ukcarry
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posted
Very sorry to hear about what you are going through, Rumigirl and hope some of the pain will soon ease. Wishing you well and strength to you both.
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Rumigirl
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Member # 15091
posted
Thank you, ukcarry!
Well, the infection is better than it was, but not great. There is still bright, red blood coming out, along with a lot of drainage. The bright, red blood is not good according to what I see online.
It looks like we're looking at yet another trip out to the doctor tomorrow, which is basically the whole day. It was supposed to be my husband's first day back at work after 2 weeks, so a huge pile-up of work awaiting him.
If I had known that there might be these complications, I may have made a different choice of surgeons, but who ever knows these things?
Keflex has been giving me daily migraines, too (which can happen to me anyway, but worse than usual).
I've been looking up about the details of the pathology report, & it's been freaking me out----not good, esp for someone for whom every surgery is a big risk for CRPS spread. Lord have mercy! It's been hard to keep my chin up, but I'm trying. I keep having to "pick myself up off the floor."
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posted
I'm so sorry Rumi .. This is just too much to bear. I know you must feel that way and you are entirely justified.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Absolutely, Lymetoo. However, I don't have a lot of choice!! It's just unreal, however.
I also do seem to have a pretty bad case of sphincter of Oddi, too, the pain is pretty bad. Yet another thing to pursue with yet another doctor. And there really aren't any good options with this either. What the heck??!!
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sammy
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Member # 13952
posted
Rumi, you seriously need a referral to see a Certified Wound Care Nurse.
Docs do not keep up with advances in how to best treat surgical wound complications or how best to heal your wound in any situation.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Sammy, I am afraid you are oh, so right!
I sent photos of the wound, which he saw as red last Wed., 2 days after the surgery. He put me on Keflex. By Thurday night, it was extremely red in a large area (sent photos) . We went in Friday & he took a culture (results not back yet that I know of), drained it, and put in another drain, as he had removed it on Wed., which I knew was too soon.
It has been still draining a lot of bright, red blood, which I see on the internet is a sign of a serious infection. Plus, tan discharge, also the same. I sent photos last night of the dressing full of blood, and the continued redness (although better than it was).
[I'm stopping this update now, as I called Sammy last night to go over it all. Thank you, Sammy!!]
This whole thing is majorly difficult. More later. We were on our way to the long drive to the doctor's today, with my husband having taken off work (very tough for him!), when I called the
doctor's office, and they had left a VM for me to cancel the appt earlier & I hadn't seen it!! Now they want to do it tomorrow, but my husband already lost most of the day of work. Too much.
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sammy
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posted
Rumi, do you still have signs of infection today? Fever? Redness, warmth, excessive tenderness? Drainage?
I'm worried that you should go to a trusted ER for blood cultures & cultures of the drainage from the breast.
If infection gets in the blood & that person has a port, the port most always gets infected. Once port is infected, it has to be removed, otherwise it is constant source of infection.
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by sammy: Rumi, do you still have signs of infection today? Fever? Redness, warmth, excessive tenderness? Drainage?
I'm worried that you should go to a trusted ER for blood cultures & cultures of the drainage from the breast.
If infection gets in the blood & that person has a port, the port most always gets infected. Once port is infected, it has to be removed, otherwise it is constant source of infection.
No, no, no, no! No can have that! I just had the port replaced in Nov! I don't think I'm at that point, but . . . I did wonder when it was at it's worst if I shouldn't have IV abx. I don't think he sees it as seriously as I have. He does't live with what I live with!
He did take a culture on Friday afternoon (before the holiday). The results still weren't in when I called from the road today.
It has been getting better for sure. I never had a fever. Actually, I can count on one hand how many times I've had a fever in my life---mostly couldn't even mount one. No warmth.
There was a tremendous amount of redness, which now is down to the incision and an area around it, not nearly as bad. The drainage is getting better, but there still is a fair amount of bloody drainage, much less though.
Yes, it's been painful, although now not too bad, but the drain is still in with all of the many layers of gauze, big dressing, and then a blasted sports bra over it 24/7.
I'll email or call you again. This gets to be a bit much for here. I'm exhausted though. Didn't get much sleep. Worrying about this, whether I made the right choice, and next steps.
On top of everything, I just lost my oldest, dearest friend to metastatic breast cancer the night before last, just heard yesterday. I kept thinking about her. I didn't even get to see her since a year ago or talk to her; she was too sick to talk or have visitors. I knew that would happen, sadly.
"Funnily" enough, I was very intensely talking to her inside on the night she died . . . connected through love, telling her how much I love her, and how she is pure love.
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