My (perhaps controversial) thoughts as a "newbie" to CA.
Comments
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ChiSandy---Another heating pad fan.....well, it makes sense.....and I know heat causes swelling...and back to the tylenol...Do I dare to ask for more pain meds? I'm from the Grin and Bear It School of Pharma-era....which seems to have returned!
OK- I just called my doctor's office and told them how much pain I'm having at night. They're going to get back to me. If worse comes to worse, I'll just give Pantaloon an extra-tight hug and painfully grin my way through it. Poor Pantaloon--she's not used to me being so out-of-sorts like this. Now I'm having to lean on her to be my rock.
Rock? Pantaloon a ROCK? She's a cotton ball...
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Trill, Happy and Heidi have been comforts to me, too. Somehow, cats just KNOW when we need their love. Heidi likes to sit in “meatloaf position” (per those B. Kliban cartoons) with her front paws on my collarbone and give me aggressive face-bumps (“I love you! I LOVE you, dammit!” Pow! Purr! Right in the kisser)! Happy especially loves to cuddle and knead my chest (especially the lumpectomy breast), so a soft pillow as a precaution helped immensely until my incisions healed and the soreness subsided. I remember, waaaay back in the day when I was preggers (DS is now 31!) my Bradley method instructor had us practice using lots of pillows to cradle our arms & legs to facilitate complete relaxation. For the first couple of weeks, before I could sleep on my side, I gathered up all the pillows in the house that weren’t already in use and did that, along with guided imagery and progressive (from the feet up) relaxation. Dropped me like a plugged buffalo: never got to the “relax your jaw” phase. DH said I even drooled as I snored. I didn’t have drains, but I assume if yours are long enough you can have them rest on the pillows alongside your arms.
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Trill, I really think you need to have your pain pills refilled and use them. I was taking them at night way past where you are now. I slept in my recliner for at least the first two weeks because it is impossible to get comfortable in a bed. If you do lay in your bed, a wedge pillow or just a couple pillow built up underneath your chest and head helped me. It definitely hurt me to lay flat. My doc said no to any ibuprofen products and told me to only take Tylenol for pain if I needed it after the pain pills.
I don't see any reason why the heating pad would be a problem. I never tried it for this but it always makes my back feel better.
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(((Trill))) Those are big, big hugs from me. I am so happy to read your path report was good news!! Bilateral mastectomy is a big surgery. Take your pain meds even if only at bedtime. I used a pillow with arms to prop my regular pillow against. Then I put small pillows under both of my arms to sleep. I got fair sleep for someone who normally side sleeps. You might also consider taking melatonin at bedtime to help you sleep. Sorry about the drains. Mine stayed in for two weeks.
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Yes, you can ask for more pain pills, you want to stay AHEAD of the pain. Way harder to play catch up later (meaning even MORE pills). You might want to think about a prescription for sleeping pills too. And I am a huge fan of recliners for better after surgery sleep!
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Yes, do stay ahead of the pain. There are no awards for getting off pain killers quickly. I did not have a recliner, so built a pillow "throne" on my bed. Nice wedge pillow, with a regular pillow on top. Stacks of pillows under each arm, travel type soft neck pillow and a pillow under my knees. I too am a confirmed side sleeper, but this was quite comfortable and allowed me to sleep well . Although I have been able to sleep on my side for several years now I stil keep lots of pillows on my bed 😀.
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Lisaalissa---Thanks for these tips!
I have two wedge foam things under the head of my mattress propping it up nicely, and a half dozen pillows, so when I turn in I'm really up... You're right--I don't know where to put my hands....they sorta end up between my thighs. I wish these drains were out! I always worry that I'm gonna yank one out by mistake....
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ChiSandy I love your descriptions of your kitties and how they are with you! Pantaloon is mystified when she approaches me flat on the bed and makes that move to get up on my chest for some love time...then she sniffs the tubes...I'm sure a million odors are there...then she stops and sits down and looks up at me woefully. When this happened yesterday I snuggled her close to my side and gave her one of those deep face massages that she loves. Himalayan noses are flat and kind of wrinkled and pushed in and she loves when i get my fingers in there and rub....she loves to knead--I call it haw-pawing--but the boobs she kneaded are gone.. I put a pillow there and she went at it.
I love my deep relaxation cd.....and surprisingly I haven't used it! Thanks for reminding me...
I talked to Dr Jacobs' nurse practitioner about my pain at night and they sent a script over to the JHH pharmacy...I'll go tomorrow with my nun friend Mimi....she can circle the block until I come out..I'm so relieved to be having something finally!
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mvspaulding---I do find that having pillows at my side helps. It almost allows me to completely side-sleep. But then I turn and my own moans wake me up....
When I had sinus surgery back in 2012 I wanted to be prepared afterward and went to youtube and looked at lots of sinus surgeries being performed--just red glistening stuff--but got a lot out of individual videos people had posted there discussing how they were feeling, dealing with drainage, etc.
Today I wondered if it would help me to go to youtube and look at mastectomies being performed, the idea being I'd see from where and why the pain...cause just looking at my chest is seeing two incisions with steri-strips still attached...and that's it. So it appears that nothing much has actually happened. But the pain says NO! It seems so out-of-proportion to what the eyes see...
But I stopped myself from going to youtube. I think that would increase rather than cause an abatement of pain to see all that they do--and them doing it!
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Molly50 thanks for the hugs and here are a few back to you (((((((()))))))))).
I did find that I could sleep fairly well on my back, something I never do.
Am getting some pain pills tomorrow and taking at least one at bedtime.
The nurse practitioner asked me about my drain output. It was 2pm today and I hadn't done a strip since 2 am. I was surprised that the right side--not the ca side and the node removal side--had put out 60cc. The left, where more work had been done only put out 12 cc!! That's strange to me... The np said it has to be 20cc per 24 hrs for two days running....
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Well I asked for more and am getting more...."toughing it out" seems so stupid!
I was sitting here on my bed earlier, eating a bowl of cereal I'd propped between my legs. And this felt so good--to be upright and leaning forward, nothing touching the touchy chest or incisions. It felt so good I fell asleep, somehow keeping myself erect and the bowl of cereal un-spilled. Don't ask me how!
Today a friend suggested I construct a cardboard cone-type thing like they put on pets after surgery to protect sites. But this would isolate the tender area. Am mulling a design in my head.... Maybe a little box-type-thing that would sit over your chest...
When you lie down on your back the body tends to "puddle" --remember how the boobs dropped off to the side when you lay on your back and you looked flat-chested?--and this stretches the skin. That's why I can only be on my back for so long before turning to the right. I take a pillow and draw it up to me. And I put my two hands right below my face.
Lately I've even put my thumb in my mouth, as I did so so long ago....self-comforting....
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Exbrnxgrl--I love my pillows too!
I had NO chest when I was young--one doctor laughed when I said this, saying that ALL young girls are flat-chested.
"Til they're FORTY?" I asked.
But I put on a good bit of weight--a real change from the 130 lb 6ft tall girl I once was. And I often wondered how heavy my breasts really were.
Well, the path report spelled it out--total of 2,060 grams for both, which is about 2.2 lbs. per breast! Yipes!
I told my brother this Saturday and he said it was like having a bag of sugar on my chest.
I had no idea they were THAT heavy!
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Hi all---
Just wanted to add a p.s., to say:
"Do you know how much I love all of you?"
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Hi, Trill. I'm back after a break. No, that's not my pony. I chose that photo because I identify with the tough little endure-ers that ponies are. What is Pantaloon's happy dance?
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ShetlandPony--Pantaloon's happy dance amounts to her arching her back, cocking her head to the side saucily, and making her rear legs go up and down, up and down, like she's walking-in-place. This wiggles her rear end side to side.... You can't keep your hands off her when she does this, which I think is the method in her madness: she gets a good massage and petting out of it.
I love the thick coats horses get in the winter....looks like the one in your photo is well-armed for the cold!
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Hi Trill - LOL on falling asleep upright and impressive that you didn't even spill the cereal. Don't worry about pulling out one of the drains by mistake - they're in there by several inches, and those stitches they put at the entry site to hold them in would wake you up in pain long before you could pull one out in your sleep. I accidentally caught my drains on a door knob a couple of times when I had them and YIKES!!!!! That'll stop you in your tracks.
Glad you're getting more pain meds - there is no prize for the mastectomy patient who takes the least amount of pain meds. They give them to you for a reason, and as Ruth and others have said, keeping ahead of the pain is important.
Some of the pain might be from the drains themselves - I had a sharp pain over the top of one breast after my bmx, but the minute the drain came out on that side I got instant relief. Apparently the drain was resting on a nerve and that was causing the pain. I used a recliner after surgeries and slept fine in that - I'm a side sleeper too and it was so hard at first to get any rest sleeping on my back. Sounds like your wedge pillows and other pillows are giving you the same support.
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Happy Holidays Trill
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Thanks, MelissaDallas! The same to you!
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You probably have had the drains pulled by now, but a recliner was my best friend after surgery and during treatment. Also, I would say no on the heating pad, heat can cause more swelling and actually increase the drain output - a lot of what is draining is lymph fluid, and heat increases lymph.
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Hi LindaKR--
Yay!! Yes! The drains are out!
No more of that unrelenting itching....not to have to roll out of bed and go strip the drains and log the output.... to be able to take a shower without those things hanging.....no more having to tuck the dangling tubes into my waistband...trying to negotiate bed-space with them (they really were the worst bed-mate since my last boyfriend the night I decided I was sick of his holding me in a death-grip until he fell asleep, his snoring exploding in my ear every ten seconds...).
I barely felt the one drain as it came out but the other---ouch! That one she said was the longer of the two and I think had taken out a lease on that spot and didn't want to leave...
Pantaloon is happy, too. I caught her sniffing around my middle today--I think looking for them. She hated having to knead her paws on my side or stomach with these strange things in her way, and there was no way she could have absorbed the intricacies of their medical necessity, so I didn't even try explaining them...
So today I did a lot of old laundry and gloried in the thought that I CAN DRIVE AGAIN! Getting back to some semblance of normal.
The incision still burns like a house on fire, but am getting used to it and calm it by putting something cool on it....even my relatively cooler palms calm it down and feel like heaven... And, yes, I figured the heating pad would be not a good idea....
The head of my bed having two wedge pillows under the mattress combined with all my pillows gives me something akin to a recliner...lying flat=not comfortable...
Hope all of you ladies are doing well in the new year...
trill
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Trill, I have absolutely delighted in reading your posts. So happy for you on the clear sentinel node! Thank you for sharing your experiences, thoughts, and feelings.
~Snowy
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Hi snowmagick-- What a neat "handle"...
I wish it would snow here in Baltimore! Our Ravens tanked, my boobs vanished in a matter of hours, I'm scared of chemo but honestly can't see any way around its necessity, and all I can do is write about the ups and downs...am glad you enjoy reading about them!
They're renovating this entire 16-floor building and are now at the 13th floor...I'm trying to figure out how long it will take them to get to me on the 3rd....two weeks per floor.....10 floors to go....20 weeks....
Gee, that's into June!! And the 5th and 4th floors, like mine, have five extra apartments...so it could take them three weeks to do these larger floors....hmmmmm...will I be in the middle of chemo then?
They're moving us--when they come to do our floor--into what they call hospitality suites--apartments in the building that are vacant, where we'll stay through the week they do our place...these suites come with cable TV, dishes and pots and pans for cooking...sheets and blankets...all very nice...
Pantaloon has her suitcase packed and sitting by the door. I told her her things will get wrinkled in there but she says she doesn't care..she wants to be ready...
I do hope chemo doesn't waste me so I can do all this! I've already gone through lots of my things and downsized, given away, or tossed...But there's still a lot to do...
I think I should call on some "helper angels." People who've offered to help....
Life! Can't live with it! Can't live without it!
The drains are gone!
I slept ten hours straight!
I peed in a jar by my bed in the middle of those ten hours and have no recollection of doing it!
(The jar is kept there for emergencies. At dinnertime I make up in the blender a green drink--kale, broccoli, spinach, baby bok chop, yogurt, stevia, banana, cranberries, blueberries, water--and it comes to almost two quarts. But this means a lot of bathroom trips and while I had the drains in and was taking pain meds and not sleeping well I barely made it to the bathroom in time---well, actually I went right onto my underpants--so I got a jar and keep it by the bed. It's come in handy.)
(When I was in my early teens I had a similar jar because the seven of us only had one bathroom until the wing was built and it could get very busy sometimes.... I managed to fill the jar eventually, and then wondered "How do I get rid of it easily?" I didn't want to carry the thing around the house and be "found out." So what did I do?
I threw it out my screened window!
This was so easy that I did it several times.
When it came time to replace the screens with storm windows, Dadda wondered why the center of that screen was rusted. He asked me and of course I played dumb...
We do what we can to survive...)
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P.S. Just chatted with my cousin in Florida and she asked about my incision and is the infection gone, etc.
Yes, augmentin took care of the infection nicely.
The incision? How does it feel?
It's hard to describe but it's not a throbbing pain that you'd expect--like after being hit with something, like when at twelve I wanted to see how hard I could hit a maple tree with a baseball bat (and vibrated for an hour afterward) (nobody could tell me anything. My father would ask, "Trilly, why do you have to DO something to know about it? Can't somebody TELLING you something be enough?" But I needed to see to believe. Know it for myself firsthand. So lots of stupid acts followed...)
It's really a burning. Numb on top but burning like a house on fire underneath.
I asked the nurse practitioner when she was taking out my drains if what they have for sunburn--think it's lidocaine and aloe vera gel--could be used on my incision to calm the burning. But she said no. To leave it alone.
The nerves are all messed up.
Until they reconnect with their severed half on the other side of Incision Gulch, it'll be burning.
And I imagine it will take some time....
True and total repatriation is a slow process.
My new friend Addie is also a triple negative bc survivor--into her third year. She couldn't tolerate chemo, it made her so sick. She's offered to be my 24/7 advocate. She has two wigs and says if I need it she could sell one and give me the $$ toward a good wig. She says orthodox Jew women all wear wigs (Is that for real?) and in Pikesville they have a cottage industry and make and sell great wigs...so that's the destination when the chemo begins...cut it off before chemo (when hers was cut she cried in the salon chair...)...get used to a wig...
Aye aye aye.
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Trill,
Some Orthodox Jewish (not Jew) women do wear wigs, however not all. Those who don't, cover their hair with scarves or hats. Yes, it is for real and connected to the concept of tznius (modesty)
Caryn, a non-orthodoxJewish woman
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Very interesting, exbrnxgrl! I wanted to stop her and ask her to explain this but she was talking about so many things and I didn't want to interrupt.....she said they make and sell GORGEOUS wigs....
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Some ultra-ultra-Orthodox Hasidic Jewish married women not only cover their heads with wigs (“sheitels”), scarves or hats, but they actually shave their heads beginning with the wedding night. Halacha (religious law derived from Talmud & Torah) mandates “tznius” (as Caryn mentioned)--the reason for that modesty is that a married woman must not display her own hair to anyone but her husband and children (if sons, below bar mitzvah age) within the confines of her home--lest she arouse men to whom she’s not married. However, there’s a concept of extra layers of observance, translated as “building a fence around the Torah,” to prevent the inadvertent violation of religious law. (Examples are bans against eating otherwise kosher “analogues” of treyf--such as Bac-Os, turkey bacon, surimi--imitation crab made from kosher fish; or meats such as veal cutlets that resemble pork so that nobody could pass pork off as veal). Married women shaving their heads prevents their husbands from becoming aroused at such a time of the month when the wife is “ritually impure” so that sex--or even touching--is strictly prohibited. And when the wife is once again “pure” and sex is permissible, her bald head wouldn’t be a turnoff because the lights would be off anyway and intercourse would last only long enough to facilitate procreation.
Ironically, the wigs tend to be super-expensive and quite becoming--but it’s okay because they’re not tempting men by displaying their own hair!
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ChiSandy--
O wow. This is so interesting....I had no idea--and doubt that this is known about in the Christian population....this is following Leviticus, is that right?
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Leviticus is the source, the Talmud (Mishnah & Gemara) the elaboration, and the unwritten rules of some Hasidic sects (Satmar, Bobover) the further derivation. Many of these sects keep changing their rules over the years, getting stricter and stranger as time goes by.
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Exbrnxgrl--I just re-read these latest posts and when I read yours I think I caught that I'd used the wrong terminology for Orthodox Jewish women, writing "orthodox Jew women"....
How rude. I can't believe I wrote that! I'm sorry and hope I didn't offend...
trill
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I will admit to being more sensitive to perceived anti-Semitism as I get older and realize it's still out there, however I didn't think you wrote that on purpose, so no worries.
The world of the ultra orthodox (Hasidim, Haredi) is fascinating but in some ways just as alien to more reformed Judaism as it is to those who are not Jewish. Having grown up in NYC, I knew people whose practice ran the gamut from extremely reformed to ultra, ultra orthodox. As ChiSandy mentioned the Hasidim/Haredi follow different rebbes who interpret Halachic law with some differences. There are some fascinating documentaries on YouTube . Google Satmar, Bobov, Skver, Belz or Toldot Aharon to get a peek into the most ultra conservative representation of Judaism. Many of these sects have their origin in Eastern Europe ( Ashkenazim) and were decimated during the Holocaust. What we see today, is a rebuilding of these sects post WWII. There are also some ultra orthodox non-Ashkenazim who come from the Sephardic tradition.
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