First, seriously, I am honestly still floored and humbled at the support, texts, well wishes, prayers, happy thoughts, comments on facebook, cards, flowers, phone calls, visits, food, etc that I'm receiving. All of you are incredible and that helps that make this journey livable and fun. Even my friend's parents, friends of friends, friends of relatives, co-workers, Megan's friends, it really is incredible and reminds me just how kind people are.
If interested, read on for a little about this whole surgery experience. It might be a little TMI for some, but I'm putting it out there. Early on I had decided that I would have a bilateral mastectomy. I was initially on the fence about a lumpectomy, a one sided mastectomy or a bilateral. I liked the lumpectomy because of no major surgery to recover from but then radiation was required and I really didn't want that. My first chemo day pushed me right toward the bilateral mastectomy choice...I was actually kind of thankful that they put that clip in the wrong place and if that wasn't my choice I would have had to push chemo and get another MRI and chip placed and blah blah blah. Whatever. I was ready to get this show on the road. Didn't think twice about my decision after that.
I did think WAY more than twice about the surgery itself though. I wondered what it would feel like to have part of me cut off or out as the case actually is. Would I feel gross, unattractive or something else. How sorry for myself would I feel? Should I tell myself ok I am going to give myself permission to feel sorry for myself for a day, two days, two hours, or however longed seemed appropriate? And I feel a little ashamed to say, my fear was really of the physical and what it would to do my emotional psyche. I'm not much of a user of the word breast so get use to the word boob. Well, by now I've used it enough so hopefully no one is too offended. I shared these fears with a few people close to me and they assured me that I'm not my boobs, I'm more than that. Which of course I know, but so nice to be reminded in this situation. And that my fears are normal. And that when they feel I've felt sorry for myself long enough they'll let me know. Can't ask for more than that!
I feel like in the weeks between chemo and surgery I really tried to get myself mentally ready for surgery. I wasn't really sure how to do that, but being reminded I was more than my boobs helped. And remembering that humpty dumpty was put together again and I would be too. I loved that Nicky sent me a pic of Nolan's Humpty Dumpty art work as a reminder. Possibly twice over the last few months that pic showed up in text. And I survived chemo! And I get to live. And and and. But this was a long surgery, 4 to 6 hours was the estimate. How long would I need to stay in the hospital? Who would manage my life while I was out of it? Would I be able to move my arms? Wipe my ass? Actually that was Ryan's question! I answered with a well if I wasn't gonna be able to wipe my own ass I would have hoped they would have said something in the pre-surgery consults! I honestly believed I could absolutely not be in better hands between the breast surgeon and plastic surgeon. Nothing against men, but I feel really comfortable with each of these women and their shared experience. That brought comfort. But I was still anxious. And I hit my goal of running 9.3 the Saturday before surgery. Thanks Rhonda for helping to get me there! And that bloody after with you, Ryan and Myriah was pretty effing amazing.
My anxiety started the Friday afternoon about a week and a half before the surgery. I can remember I was actually in the shower and wondering wtf was wrong with me not being able to catch a deep breath. Took me a little bit to realize it was anxiety. I think that particular day was anxiety for a few reasons, but mostly this surgery shit was starting to get real yo. And I was like um I don't know if I can handle this anxiety shit for a week and a half. My surgery was scheduled for Monday May 4 so what I did know was that I couldn't eat after midnight the night before, no alcohol 48 hours before (minus my post run bloody and beer of course), had to shower with some special soap and be there by 6:30 in the AM so I could get this radioactive crap through a shot in my nip. Twice. And that was suppose to burn. Fun stuff. The reason for that was so that the surgeon could see which lymph nodes the ducts went to first, those were the nodes they pulled out to test for cancer. Having that done puts me at risk for lymphodemia of my right arm for the rest of my life. That means no IVs, blood pressure cuffs, etc on my right arm. Ever. Yep, my Road ID is up to date!
I asked Megan if she preferred that Ryan or my mom get her to school that Monday. Her question back to me was well who do you want to take you to the hospital? And I was like well played kid, well played! I decided I wanted Ryan to take me and Mom to get Meg to school. Then Meg proceeded to tell me that if it were her in my shoes she'd want her mom to take her. Awe, kind of love that she said that to me and made me feel a little guilty at the same time. Go figure. Daughter guilt this time, not mom guilt for once! The night before we talked through it and mom thought if she got Meg to school that I wouldn't get to see her before surgery. Well, that wasn't going to do. Best case I wanted both mom and Ryan there. Time to ask for help! Rhonda got Meg to school so Mom got there just a little after Ryan and I. As a matter of fact, we were still in the waiting room. They come get me and take me back for prep. Kind of rushed me through because my surgery time was at 8:30 and they had to prep me for surgery with the IV, give me two of the stinging shots in the nip, yeah two, quick visit with the anesthesiologist, breast surgeon and plastic surgeon. That was kind of a lot to cram in. And get this, the nurse that was in the pre-operating room was the same nurse that prepped me for my surgery to get my port put in. She was a traveling nurse for a long time but had settled in Appleton and had a friend that lived in Montana that was recently diagnosed with breast cancer. She seemed like a cool lady.
The plastic surgeon shows up first. Dr. Elizabeth O'Connor, even though I don't have the finished product yet, I'd still totally recommend her! I gotta drop the gown and she marks up my chest with the incision line and then a bunch of other lines with a sharpie looking like marker. One went clear up to my neck with an arrow at the top. I think she was outlining my chest wall so that she could place the expanders in the right spot. So I'm all marked up and she shoots a couple of pics. Not sure if she used the pics during surgery or if they'll go in that before/in process/after album they'll show other patients. Either way, whatever, use those damn pics. Show someone else what they are in for and that they too can endure. I asked her how long she thought the surgery would last and she said she thought they had the operating room scheduled for four hours. At my plastics consult we decided that rather than preserve the nipples, she'd rebuild them. It was her recommendation that I'd be happier with the outcome if I did that. If not, she'd have to do a lift on them and there was a chance I'd have to lose the right side one anyway if the tissue tests came back with any sign of cancer. I was and am still good with trusting her professional opinion. And she tells us at the consult that most of her patients don't even wear bras during the reconstruction phase. For those of you that know me well, that goes along with another mantra of mine.
Ok so then these two dudes come in, one in scrubs holding a box that said radioactive and another guy in street clothes. Sweet, time to get radioactive stuff shot in my nip, can't wait for that burn. Twice, did I mention that? I was asking well how much does it suck and they were like it will suck for just a little bit. Honestly it was super short sucky time but it stung like a mother when it did. Oh and now just remembering I had to get a heparin shot in my stomach too - that actually stung worse than the ones in the nip. Go figure.
And then the nurse anesthetist comes in and he tells me he promises I won't feel a thing! Yep, I'm good with that. Dr. Bermas was next, by the way, she is awesome too. She gave me a pillow for under my arm for after surgery (sometimes the removal of the lymph nodes makes it sore so there's pillows for that!) and put a breast cancer strong bracelet on my right wrist, the side with the cancer. She said we are going to take great care of you and you are going to be just fine.
Meanwhile, my dad showed up at some point during this process too so it's Ryan, I, and my mom and dad and the associated nurses or doctors coming in and out of this little room. It was finally time to say our good byes. I was just wondering if I was going to cry when they all said good bye to me, I sure wasn't feeling very brave, was feeling pretty scared but still ready to get this show on the road. Ryan said his good bye first then dad then mom (I think, I was just trying not to bawl at this point) and then they wheeled me out. I will admit, I had a tear rolling down my face as they wheeled me out but by the time we hit the operating room I was like game on. Both surgeons were standing outside waiting for me to get there and get put under. And both gave me reassuring smiles as the nurses wheeled me in. If memory serves, it was a whole room full of female nurses and surgeons and one male nurse anesthetist. Who really knows who came in and out during the 4.5 hours I was in there. Yep, surgery went a little long, not sure why. They all had warned my parents and Ryan that I could be in post op for up to an hour and a half after surgery so not to be worried if it seemed long.
Dr. Bermas finished first and went out to give my peeps an update, Dr. O'Connor finished up after and did the same. At least I think that's what Ryan told me, my memory from that period is admittedly a little fuzzy! Apparently they both came to see me in post-op but I don't remember a darn thing. I was hoping to see my friend Nicky's sister in post-op as she was suppose to be working that day but sounded like she ended up going home early. I sure did ask if she was there, thought it would have been fun to see a friendly face that I knew! Not that everyone else wasn't friendly because they certainly were!
Moving to the hospital room after post op recovery was a bit scary. I was like um, I don't know how to get from this bed to this other bed. I had to use a body board thingy and they basically wrapped my sheet around me and slid me over. I remember it hurting when my shoulders bent toward the middle of my body. Ugh. Once settled into the bed it was ok. They handed me the morphine thingy so I could hit the green button for more whenever it lit up. I was getting a straight baseline drip too but then had the ability to give myself more on demand. Oh yes, I hit that damn green light almost every time it lit up. Well not right away. Mom came in pretty much right away when they were moving me and then I asked her to go get Ryan and then after a bit he went to get both mom and dad. Everyone just kind of sat there for a while, this is my foggy recollection anyway, chatting a little, looking at their phones, looking out the window, staring at me. Finally after a while of that and me saying it's too quiet I was like ok mom and dad you guys are out! I remember feeling just annoyed and I'm sure it came out like that even though I sure hope it was the drugs talking! So mom and dad went to have dinner and left Ryan with his semi coherent girlfriend for a bit. Previously, I had decided I'd likely spend the night in the hospital by myself so unless I had a drastic change of mind we'd stick to that plan. Ryan had his kids that night so I wanted him to be able to spend some time with them and I wanted mom and/or dad to tend to Megan and keep her life as normal as possible. That worked out ok. I was pretty happy to not have anyone there when I tried to get up to go to the bathroom for the first time. Yeah, more on that later.
As Ryan was leaving, Nicky and Rhonda got there. I can remember trying so hard to have conversation with them, but as soon as they'd say something I'd forget what they said and just nod my head. One time Rhonda was mid sentence, I must have passed right out on them and I opened my eyes just in time to see her mouth to Nicky, she's sleeping! Haha, funny stuff. Was sooooo cool that they came, I was so out of it I couldn't even track in a conversation. Makes me laugh just thinking about it now. I think I must have just learned about that morphine button when they got there.
I remember thinking what a cluster that effing hospital bed was. I had an iv on my left side with the thing for the morphine pump, the leg massager thing at the base of the bed, the blood pressure and pulse ox thingie on the right side of my bed, but the BP cuff on my left arm so the cord crossed my body. I was SO hungry but was on a liquid diet for the night. Beef broth and jello it was. I think anyway. I remember the first time I got up to go to the bathroom I was so shaky I wasn't sure I could walk so I think the nurse helped me. Then they had me use a walker and maybe the belt thing too. All I know is I drank a lot of liquid and had to haul my ass out of that bed at least three times that night to pee. I'd have to put the bed in just the right position, schooch over to the side, swing my legs over and try not to push up with my arms. Getting back into bed was even harder, especially without my underwear crawling out of place. No underwear might have been a better option, I know right? But after that whole appendix surgery fiasco, I was sure to pack 'em. And did you know they measure your urine output? Yep, for real. I do remember the first time I got up to go to the bathroom I went to wash my hands and I looked in the mirror and was like who the fuck is that looking back at me. I looked totally ashen gray with big bags under my eyes. Ugh. Ah well, a little morphine and I was back to sleep. Every time I woke up I kept looking down at my chest, but was too scared to lift up the gown and really look. Too scared. I ended up waiting until just before the doctor's rounds in the AM. The plastic surgeon came in first and she said yep all looks great! Swelling and bruising to be expected and the drains look good. Oh those drains, that's a whole other story that's with me still today. I had finally peeked and was like hmmm, this is interesting. Dr. Bermas came in probably an hour later to check on me and she agreed all looked good. She must have been able to tell I was like um this doesn't feel so great and looks like I will never be normal again. Not sure how she knew, but at that moment she said don't worry, this looks just like it's suppose to and Dr. O'Connor will make you beautiful. Perfect timing for those words, I SO needed to hear them at that moment. The incisions are still covered by tape so I can't see them, but they appear to only be about 5 inches (if that) long on each side and there's no scarring in my armpits at all. Scars = memories = battles won so I'm deciding to not be ashamed of the scars that will remain. I earned them. And get to live. Yep, common theme right?
So after surgery, there's these drains hanging out of the sides of my body. Two under each armpit. They are a total pain in the ass, but I get necessary so my body can heal and get rid of the excess fluid. I knew up front they'd stay in two to four weeks, just depending on when my body quits producing the fluid. Megan is fascinated with them and likes to help me strip the cords, empty them and measure them. It is an exercise in patience for me, but I'm ok with her helping and showing that much interest. I got two removed today, which is two weeks out from surgery. Four would have been even better! To shower I have to pin them to a lanyard and shower with them hanging around my neck. My 15 minute get ready regimen, make up included, hair still doesn't count, has now turned into about a 40 minute ordeal. Seriously! Hopefully just having two will cut my shower time down! The surgeon sent a prescription to this specialty store in Appleton for a post mastectomy camisole. Two weeks later, I can maybe say I shouldn't have gotten two, one would have been enough. I ended up taking some of Megan's too small little footie socks that you'd wear for flats, sticking the drains in there and then pinning them to the sides of tank tops for during the day. Yep, home office attire at its best. Thank goodness for all those ribbed tanks I had sitting in my drawer since I sure don't want to put pin holes in my favorite lulu tanks, although I do miss them.
I was wondering if I'd need to sleep sitting up in the recliner for the first week, that was what the instructions said, sleep at a 45 degree angle for the first 7 nights. Well, after the first night in the recliner, I just propped myself up on a couple of pillows in bed. I'm a back sleeper anyway so that worked just fine for me. That Saturday night after the Monday surgery I thought I'd give a whirl driving and heading up to Ryan's house for the night. Like a trial run on my own without my mom. Which meant that was the day that I laid off the pain pills and managed the pain with tylenol and ibuprofen, actually worked just fine. I'm still going with that method to manage the daily pain two weeks later. Usually I can tell by the time I sit at night that oooh I'm sore. I've had to keep track of when I'm taking what, that I'm taking those antibiotics (necessary as long as drains are in), not taking too much of something, blah blah blah. I've been taking a pain pill and a muscle relaxer at night, but interestingly, I wake up after about six hours and am like ouch. Then comes the ibuprofen. My kidneys gotta love me...oh well, at least I drink a lot of water? Once I wake up in the morning I feel a little sore, but just moving around, making coffee, helping Meg, either I don't notice the pain/tightness as much or the tylenol kicks in. Maybe both?
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| I have a habit of snapping a selfie with a sleeping Ryan in the background. He kept trying to snap a pic of me in my hospital bed, but I would wake up just in time! My mom managed to grab this on the day we came home. Yep, no recollection, but it appears Zipper was happy I was home. |
I did ok getting back to work and managing the uncomfort with tylenol and ibuprofen, it really wasn't that bad. In hindsight, I felt like my brain really started working well late that Wednesday afternoon (almost a week and a half post surgery), Thursday evening was asleep on the couch before 8 (Meg managed to snapchat a selfie of her with me sleeping in the background AND she texted it to Ryan, yeah, funny kid) and by Friday around 10AM I started to feel wiped out. Mind you, I don't sit around much at night so that was likely part of it too. And there was a busy weekend ahead so the prep building up for that kept me hopping Thursday and Friday too.
I'm a little pissed off that I'm two weeks out from surgery and still sore, totally annoys me. Not sure that the surgeons understood I don't like not being fully capable. I get reminders that its temporary. All temporary, short term pain for long term gain. But really, I'm doing great, feeling great, moving around better than to be expected and managing just fine. I'm on limited duty as far as housework, really not suppose to be doing much of anything or lifting anything over 10 lbs for four to six weeks post surgery. Which means Megan is my work horse. And that kid has not had to do much around the house like ever. Not because she wouldn't, just because I just did it as I went about day to day. I will say she has totally stepped up to the challenge, learned how to clean a toilet, do laundry, even sort it like I do and wash the workout stuff cold, hand up to dry, etc. She's doing pretty good on the riding mower so she'll be doing that a few more weeks since the plastic surgeon said I can't for a while yet. And to Meg's credit, the complaining has been minimal. I think she's kind of enjoying helping out a little more...I could get use to it! I will say, I'm not an anal clean house person by any means, but I would vacuum regularly every few days, those darn hairy pets! So, I've had to show her how to do stuff, but also learn to not criticize and accept that she'll do some things differently than I do and that's ok (um, vacuuming comes to mind!). Picking my battles and adjusting my expectations (that vacuum is not getting used much or in the manner I'm accustomed to, see a pattern here?)...I do think I've mentioned that as long as I have appropriate expectations I can manage most anything and in more ways than one, I am definitely a work in progress.
More to come on the cancer free call, post op follow ups, first fills and first pitches.
Thanks for coming along on my journey,
-- cancer free chick (!)
You endured so much Peg. Thanks for sharing it openly. Short term pain for long term gain reminds me of this favorite, our present suffering are not worth comparing to the glory to be revealed.
ReplyDeleteBig gentle hug to you and bear hug for Meg! Proud of your courage, Cous!