My (perhaps controversial) thoughts as a "newbie" to CA.
Comments
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Hi all----
Just wanted to drop a note to those who've come to this topic.
If anyone has reason to be thankful this year, it is I!
You--and this site--have helped me learn, cope, vent, be jokey (when needed), sort, decide, and move forward. I so appreciate your being there.
I wish you all--and everyone on this great site--a very joyous Thanksgiving!
love to you,
Trill (and Pantaloon)
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Love, turkey and cranberry sauce to you too, Trish!
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And stuffing, mashed potatoes, and pumpkin pie
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I am reading these posts late in the game and just have a few things to add.
I am sensitive to all meds and requested a paravertebral block for my mastectomies (mine were done separately). The first time, though I asked for fewer pain meds, they still gave me dilaudid and I had terrible nausea. The second time I was wiser and made a BIG point of saying that with the paravertebral block, I wanted NO pain meds and as little anesthesia as possible (the block does minimize anesthesia). I was absolutely fine, completely pain free and normal, after the second surgery. No anesthesia effects and NO need for pain meds. The block does wear off after a day or two and then, well, there is some pain
I was lucky with drains that came out in 3-4 days. Don't go by any average time for them to come out. I was hesitant to call after only 3 days but I am thin and it did need to come out, and had done its job.
I wanted to have one mastectomy first and see how my body handled it, and then had the second. But if I had it to do over again I would have both at once- but NO pain meds with the block!
For others reading this, a Grade 3 cancer may have a low Oncotype- 30% of Grade 3's do. I was Grade 3, focal lymphovascular invasion, but had an Oncotype of 8 so no chemo because anti hormonals will help me.. It is very possible that it is not the Grade that necessitates chemo for you, Trill, it is the negative hormonal status.
Good luck Trill and finish that book!
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Hi windingshores--
Thanks for your input. Interesting about pain control. Glad you got it sorted ahead of time..that was very bright of you.
I told my doctor that I had a bad reaction to anesthesia both when I had a hysterectomy in 1990 and after sinus surgery in 2012. Writhing on the Rec Room table...just felt sick sick sick all over. She said that in that case the anesthesiologist should be told to hold the narcotic type and use something like propofol (sp?) which isn't a narcotic. I dunno. Maybe that sick thing is par for the course as the body fights to get rid of the drugs. It kinda makes me worry about chemo. I certainly will let the oncologist know and maybe a pre-chemo anti-nausea can be given. I was told that they have wonderful things for this these days...
Well, I'm headed for surgery December 14th. Am scared a little, of course, but am so glad to have a date and this is for a double mastectomy--get the two off right in one fell swoop. Well, won't be that savage--but anyway GONE. The Nurse Navigator told me to buy or take a blouse and stitch myself some nice big pockets inside for the drains. I dug up a couple of old pj tops that button up the front. Think they should do if they still fit me!
Family is coming for T'Day dinner...it should be fun....Pantaloon already has her apron on...she loves cooking...
love to you all, t
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Trill1943,
Check out the topic "Shopping/packing/to-do list for surgery + recovery" in the forum "Surgery - Before, During, and After." It's full of good info and tips.
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I've had propofol and it is wonderful!
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I agree with ruthbru about propofol. It's good stuff. I wake up from it feeling like I've had a refreshing nap
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Hi Janett2014--
Thanks for the tip. I'll certainly visit that topic.
Hopkins has someone called a Nurse Navigator. These might have been around for awhile but this was new to me. She's great----AND she's a breast cancer survivor, which means she knows about stuff. I feel I can ask her anything.
I hope she doesn't recognize herself if she checks out this site and topic. Because she might not be flattered (then again, she might...) that she reminds me of the comedienne Amy Sedaris. She has that perky, quirky personality and flexible flyer face and I like that sometimes when she laughs she snorts a little. (See why I don't want her to see this? I have the feeling Amy Sedaris snorts sometimes when she laughs...)
I don't know how I got there exactly but I've spent the last hour watching videos on Youtube on alternatives re: cancer.
Curing it with baking soda, water, and molasses? Essiac---Essaic--(can't remember how to spell it) tea?
Something tells me cancer's wily-er than tea.
How many souls are being taken in by this, not as additions to traditional care but as total replacements for it?
Some of these people have a knack, I'll give them that (I want to believe they're consciously, deliberately manipulating for some strange reason, but what I FEAR is that they believe what they're saying). There's just enough, just a smidgeon of "common sense" and folksy oversimplification underlying their monologues to make them seem harmless and credible. They push ardently the benefits of vegetables and fruits--but who out there ISN'T promoting vegetables and fruits? They rail against the food industry, but who ISN'T aware of the aisles full of nutrition-less Cheetos and the Cousins of Cheetos (Sorry, Cheetos. But you ARE fun and tasty.) Often their expressions betray the effort it's taking to keep their Jimmy Stewart-like bland trustworthiness from being completely overtaken by their rabid, Cujo-like passion.
You watch and listen to what they're selling: "Hi, I'm Mr. or Ms. Everyperson, not wearing any makeup and my tie's a mess and I'm just here in my Everyperson office or kitchen being real, like you, flip-flops smacking the floor, shirt a little mussed, like yours, calendar on the wall behind me, fake rubber tree back there trembling its shiny leaves as I work hard to not be like some slick doctor or pharmacy rep, plus I have no agenda but to give you the unvarnished truth--uh, wait--scratch that! I mean NO varnish! Varnish GAVE you cancer and this Varnish Remover Tea will take it AWAY!"
I stopped watching. Not because I felt offended or insulted or manipulated--although I felt these at times--but because it was just so damning boring.
Cranberry sauce. The whole kind. (With stevia? How will that taste?) That's what I need.
Because they do.
They believe it.
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Thanks ruthbru and Janett2014--
So propofol it is. I like the idea of waking up refreshed.
T
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I was also given propophol. Worked for me, wore off very quickly.
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Trill, I just used safety pins for the drains. Worked fine. Left a pin hole in a couple of old shirts.
Pain meds are also often narcotics, of course (dilaudid is used a lot, after surgery and then sometimes on a pump in the hospital room). They made me vomit. I thought it was the anesthesia and surgery.
The paravertebral block eliminated pain meds entirely and I woke up fully alert, truly. I felt exactly the same as I did before surgery, physically and mentally, within minutes. I was walking up and down the hallway, eating and talking, just fine.
I asked for it just before I went in, when the anesthesiologists came to start me for surgery. I had expected to arrange it earlier at preop but there was no opportunity offered to meet with anesthesiologists and I was told I could request it just before, which I did.
Regardless of what you do, good luck!
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The bad thing that happens to me and pain pills is that I get terribly constipated. If that is a problem for you, you might want to ask your doctor if it is okay to take Colace (or something similar) either before surgery or soon thereafter....before the problem develops.
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They gave me doculace. But that is only a softener. I found senna laxative with softener added, and also used prune juice, full frontal attack. I could only take one oxy a day so waited through pain to take it in the evening. Luckily the pain was only a week or two. Visiting nurse visit was largely taken up with constipation from pain meds!
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Hi windingshores,ruthbru,Sjacobs--
Thanks for all the good pain med etc ideas!
As the turkey roasts, filling the apartment with great fragrances that I don't think any of us--if we go for turkey at all--will ever tire of, and I am temporarily rendered without a thing to do, I can sit here and contemplate my chronic constipation, which I know will only take a, um, firmer grip on me and my imagination with pain meds, I do have to say that I have at least kinda solved it thus far. It's my Geriatric Cocktail: Konsyl dissolved (sorta) in prune juice and then drunk at 60 mph.
I discovered Konsyl when I got sick of the fake sugars or real sugar added to good ole Metamucil. K isn't cheap and dissolves like sand in water, then clumps like the worst mats Pantaloon gets--well, not any more with good combing--but doesn't have any crap in it and no sugars of any type. So prune juice is essential. And downing instantly if not sooner. Am gonna take some for overnight at hospital and a bunch beforehand if doc is OK with that. And I have a little wheelbarrow out back full of K just in case...
Kat was saying to take an old shirt, turn it inside out, and stitch on good-sized patch pockets to hold drains. I just discovered two old pj tops today that will work fine--button up the front, soft and broken-in, pretty enough that I wont suffer a stroke when I get that first post-op day view of myself in a mirror...
Ladies, hope you are having, will have, or had a lovely Thanksgiving.
Love, trill and pantaloon
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Trill - I've tried to skim the pages to get your complete diagnosis, but I gather you are stage 1, Grade 3, ER/PR negative HER2 negative - and have decided on a BMX. I didn't see the size of the tumor. If you get a chance, go into "my profile" and fill in your diagnosis. If I say something that has already been covered, sorry in advance. I did read about your nausea problems. You should definitely ask for a scop patch (scopalomine). It made all the difference for me. First surgery they couldn't even get me to stop throwing up long enough to get me out of ICU for hours. Further surgeries - no problems.
BTW - I'm 71 so can relate to your feelings. And no, Medicare doesn't pay for wigs. But they do pay for bras.
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Hi MinusTwo--I haven't filled in my info because I'm not confident filling it in. You guys seem so "up" on things that are still new to me, and I haven't had surgery to find out more about nodes.. But I will go there and fill in what I can...I honestly can't understand most of the things on your info section--it's so technical. Mine is 1.2 cm in size. And yes, a triple negative, and a Stage 3. That's all I know at this point. And a double mastectomy to come followed by chemo.
A scopolamine patch. Huh. Sounds like it was perfect for you.
I actually didn't have so much nausea--I don't know how to describe it. If you've ever had food poisoning, it's like that. A TOTAL BODY sickness.
I had this last spring and it was incredible. Hit so fast and rendered me utterly so sick I could not bear to move a muscle. It hit me right after I pulled off a length of floss to floss my teeth after eating this huge salad I'd made with ingredients from Safeway. I got one of those clear plastic containers of spring mix and it had a pungent odor but I thought that was just from certain greens in there I'd not encounter before. I sure hadn't! But the box said "triple washed" so I didn't do that step--just pulled out a fistful and added other things and was feeling great until about twenty minutes later when i went to use that floss. I put the floss down on the bed and felt funny and then all of a sudden I felt so bad I didn't want to do anything but lie there on my side and that's all. Moving was sickening awful. I went in the bathroom and tried bringing up that salad but nothing came up. I just flopped down on the bed and didn't move a muscle, turned off the TV--even listening to stuff was hard--and that was it until morning.
Thank God I got saltines and bananas and bottled water at the Safeway, because that's all i ate for the next day, an inch of banana and a sip of H2O every hour. Finally I was able to get up, about 24 hours later. I'd thought I had stomach flu, enteritis, but I think that odd smell i smelled coming from the greens was something really bad. So this I learned: EVEN THOUGH IT'S IN A SEALED CONTAINER AND SAYS TRIPLE WASHED, WASH IT ANYWAY! It takes seconds and is worth it.
So it was like that, coming out of surgery--an overall sickness. I thrashed on the bed, half conscious, writhing, moaning, like someone possessed,kind of like my whole body was nauseous. I did the same after my hysterectomy. I thought it was normal and inevitable and unavoidable, but now I think it was that mass of narcotics.... I'm hoping propofol will be kinder
Sorry for this long ramble. It's the wine I had at dinner. My siblings just left and we got to talking about how my older brother Dick was after his total knee replacement last winter. His wife said it wasn't like mine--his was taking five hours to come to full consciousness...maybe there's something we both inherited--being overly sensitive to narcotics...
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P.S. I just re-read my last post and see that I talk about how I felt after anesthesia--writhing on the stretcher, moaning, couldn't stay still--and very different from how the food poisoning affected me, turning me into an immobile zombie in great distress. The point I was trying to make was that it wasn't localized--headache, queasiness, dry heaves, dizziness, stomach churning--it was EVERYTHING and EVERYWHERE and ALL OVER. I felt I was possessed--the one thing making me thrash, the other turning me to a stone with senses.
I've just been reading about lymphedema and probably read too much. I'm trying to get it in my head before I go for pre-op p/t. I have something called impingement syndrome in my left shoulder which means I can't like lift things real high or over and over or it hurts like hell. Thing is, my cancer is on the same side. Will I be able to do strength exercises?
Aye aye aye! I feel like I can't read anymore. It's too hard...
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trill- yup. You will be able to do strength excercises. Find a lymphedema Physical Therapist to work with. They will be able to help you build back us safely. I have a sleeve and do manual lymph drainage, and have had no probkems, even from rock climbing.
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Thanks littleblueflowers--
I hope Hopkins is sending me to a good therapist. They have a humongous o/p rehab department I saw when I was there last week--guess that's where I'll go.
You ROCK CLIMB?
How do you do manual drainage--or does someone do it for you?
You ROCK Climb?
t
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Trill, here is an old post I wrote on LE (on an exercise thread, which is why there is so much about exercise in it), maybe it will be helpful:
I had 11 lymph nodes removed, so this (LE) has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.
First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.
That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):
- No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry (I have a good website if you want it)
- Wear gloves when doing yard work, gardening etc.
- Wear sunscreen when out in the sun, bug spray when out with the bugs
- If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
- Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
- Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does, but that's just me
- Keep a healthy weight
- Keep hydrated, limit alcohol
- Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land)
- Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking a heavy bag....
- When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
- One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.
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http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgery
This is a link to The American Cancer Society & exercises to do right after surgery
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Trill, all the things that ruthbru said I second. As for the manual lymph drainage, it's a massage you do on yourself. Not difficult. Your therapist will teach you. Yep, I absolutely do rock climb. It really helps break up scar tissue and improve range of motion and strength. I only really realized how much I love it after cancer treatment ended.
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Dear ruthbru, littleblueflowers, and suersis--
Thanks again, ladies, for this feedback.
ruthbru, you are a fountain of information. I will take all this to heart. Am eager to begin exercising --just sorry the ca is on the left side...oh, well...I believe 100% in any p/t I've ever had--they are great.
suersis--The propofol sounds better and better.
I asked the doctor to let me pick up and fill my post-op meds and she's going to do that--it saves a lot by having meds on hand at home beforehand. Guess you guys know this, too.
The friend who's taking me to the hospital just asked me if I'm staying overnight and I said yes, the surgical night. She then said won't I need two nights? She also said back in her day there was lots of bandaging, nursing visits, etc. But I told her about the drains, which help during the post-op period and reduce bandaging. How much bandaging is there? Where do the drains get attached? How do you sleep with them?
t
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Trill1943,
Doctors are SO different. I'll answer your questions as they applied to me, but your doctor 's instructions may not be the same at all. For my BMX I spent two nights in the hospital and yes, there was a fair amount of bandaging at first. The nurses taught me how to take care of them though, and by the time I went home the size of the bandages had gotten quite a bit smaller. I had four drains: two on each side. The nurses trained me in how to measure and record the fluid. Mine were in front, under where the expanders were placed. They didn't really give me any trouble, except sleeping was an issue. I had to sleep on my back which I don't like. I used lots of pillows to prop in various ways, and when I was tired enough I slept. Also I could lean a little with a pillow behind my back, and that kind of gave me the illusion of sleeping on my side.
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Hi Janett2014--
Appreciate these tips! I'm a side sleeper--on my right side--but guess that will have to be stopped during recouping..the drains sound yucky but if they minimize bandaging I'm all for it. I'm not doing reconstruction.
Hope you had a nice Thanksgiving!
t
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Paravertebral block Trill, I get very sick from anesthesia. For my mastectomy my anesthesiologist used a paravertebral block. It was amazing. I wasn't nauseated and didn't shake for hours. I also had a scolpamine patch. It was the best surgical experience I've ever had.
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Hi Molly50--
Thanks for writing about anesthesia...I'd never heard of this...I think I'm going to go with propofol and see how I do after...knowing that narcotics can cause such reactions is enlightening. Never again!
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Trill, I am a side sleeper too and these wedge pillows make being able to sleep on your back much easier. I had two that I used after a major surgery. They also make it much easier to be able to sit up and get yourself out of bed. My Mom & Dad found mine at Bed, Bath & Beyond, but JCPenney & places have them too.
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Another thing, anyone who is on any kind of blood thinning drug can't have the paravertabral block
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