My reconstruction, Phase II surgery, was pretty non-traumatic, compared to the Phase I surgery. Phase II was a little fat grafting, and a tiny bit of reduction, so no drains necessary.
What I didn’t know, is that approximately 10% of patients have drainage issues in what is known as the T junction. The sort of lollipop shaped incision that encompasses the areola in a circle, and a straight line or lollipop stick that goes down the middle of the breast under the areola. This part of the incision, under the areola, sometimes separates a little, and blood and fluid drain out. Not uncommon, but not so common that the possibility was included in my aftercare packet. When it first started happening to me, it was like a clot or a scab had fallen out, not really bleeding, but it smudged up my clothes. Still, I freaked out and called the resident on call, since it was after clinic hours, and left word for him or her to call me back. Reading my aftercare packet again in the 4 minutes it took to for him (for it was a him), I noticed the literature does say some oozing or drainage may occur. So I felt a little silly by the time the resident called back, but told him what I was seeing anyway. He asked me the standard questions to determine if any infection was present – temperature of 100 or more, does the tissue seem hot, is the tissue red at all – then told me to cover it with a dressing to keep it from ruining my clothes, otherwise there was nothing to worry about. Okay, fine. So I taped a maxi pad to my chest (it’s in the literature, I’m not kidding) since I didn’t have any surgical gauze, and went back to watching “Castle” with my husband.
Everything is all fine and well, until the next night. Whoa! What the hell is this? We’ve gone from a slight ooze to a full-on drip. The fluid is so dark, it almost looks purple. Hmm. Consulting my aftercare packet again, I see a phrase that goes something like “during the healing process, bruises may liquefy, and the fluid may seek a way out through the surgical site” or something to that effect. Still, I called the resident on call, for it was again after clinic hours. We again went through infection detection questions – no fever, redness, etc. Then he told me that sometimes, not often, but maybe about 10% of patients, something comes loose, and while it’s nothing to worry about, he suggested I wear a bra to support the breast, in order to ease the tension on the surgical site, and call the clinic in the morning, to find out if they’d like to see me before my regularly scheduled appointment on Thursday.
So I again was mostly reassured, and went to bed able to sleep that night, not worrying about major surgical malfunctions.
The next morning I called my clinic, and spoke to my surgeon’s primary nurse. I told her what was happening, and what the previous night’s on-call resident had to say about the tension on my incision, and how something may have come loose. She poured scorn on that idea, and told me how she felt this was all normal. She told me to continue keeping the dressing on the site, and they would see me at my regularly scheduled appointment, which was the next day anyway.
At the appointment with the surgeon, her primary resident, and a student, they packed gauze strip wound dressing into the hole in my breast, and taught my husband how to do it at home. No big deal, he’s used to getting the gross aftercare jobs whenever I have surgery, so obviously he’s the man for the job.
Well, Thursday night we removed the dressing and tape from the site, and pulled the packing gauze out of the wound. I’m not looking – because there’s $hit coming out of a big, gaping hole in my boob! Yuck!
First we tried standing in the bathroom to change the dressing. That didn’t work, so we decided that the best thing to do was for me to lay down, as I had done at the doctor’s office. No dice, we still couldn’t find where the gauze strip packing was supposed to go in (the doctor made it look SO easy). So we gave up that night, just covered it with surgical dressing, and went to bed. My husband was ready to try again in the morning, but I vetoed that idea. He was so tentative when he’d tried it the first night that I didn’t allow him to try again.
Back to the doctor we go the following week, and we have to make our confession – or I did, anyway – that we never did do the packing of the wound as we had been instructed. I was adamant that if anyone was going to do the packing, it was going to be me. I don’t often dig my heels in, but when I do, you’d best just stand aside and let me have my way. Fortunately, Ken is a bright man, and apparently so are my doctor and the doctor’s resident. So Dr. Colohan’s clinic nurse came in to give me the tutorial on packing a wound, and a new bottle of gauze strip tape. After the first few days, I have to say I’m getting better at it. The first couple of times, I think it took five attempts to reach success, and I still don’t believe I was packing as much tape into the wound.
Now, several days later, I’m packing like a champ. And packing more and more into the wound, it seems. And still soaking the maxi pads I’ve been taping to my chest. Plus it smells like old blood, and I’m passing clots. Ugh. I was joking with Ken last night, and said it’s like my boob is having a period. He laughed out loud, and said “If you haven’t used it already, that’s a great title for a blog post.” Which I didn’t use, but still, here we are talking about it.
Last night I had said that at least I wasn’t having cramps with my boob-period, but this morning I’m getting these twinges, that I am assuming are the clots passing, so in a way my boob is having cramps to go along with its period. And it’s the Mother of all periods, because it’s a rather heavy flow, and it never seems to end. And it’s all normal. Awesome.
I was doing some research last night, and based on what I’m reading about other patient’s experience, it seems like it gets worse before it gets a lot better, which is where I seem to be. And totally normal for the exudate (ha! That’s a medical type word, it means the stuff that comes out of a wound) to smell kind of yucky. Not completely foul, as that along with a higher than normal temperature and redness of the breast, means infection. But it’s totally normal for a wound to smell rusty, musty, or like old blood, which is how mine smells. Ew. As unpleasant as that sounds, I found that rather reassuring. I was worried that something was going horribly wrong, but it turns out this is all normal, and possibly even a sign that soon things will get better.
Lord, have mercy, I certainly hope that is true.
It’s been a while since I last gave you all an update. I guess that’s good in some ways, as it means I’m not focused on the next phase of my treatment/surgery/recovery, and more focused on living my life. Because, Surprise! There is life after breast cancer, and you’ve got to go out on live it. What else are you going to do, but move on forward? I certainly am.
My range of movement in my right arm is not back to 100%, but hey, it doesn’t hurt to bend, load the dishwasher, or fold laundry. So my house is sort of/semi clean, for the moment.
My hair is long enough to color, and long enough to cut into some kind of style – which I finally did! No more chemo curls, no more gray. I’m now a super dark brunette with a mean blonde streak, with a short, Pin-Up Girl style bob cut. Whoo, hoo! I think of it as the kind of hair I have to live up to, now that I have the energy (and the eyelashes) to make an effort to look like a girl, instead of a patient. What a difference a year makes…
I have two breasts now, as you know, and mostly look normal under my clothes. It is obvious to me that I’m not exactly symmetrical, in some of the tops that I own, but I like to think that most people wouldn’t notice, if they didn’t look too closely.
My phase II is next month, where Dr. Neligan will reduce and lift my left breast, and do some fat grafting on the right. Hopefully this will result in both breasts appearing to have the same size and shape. I have been looking forward to this, for the most part. Still a longer surgery, but a shorter hospital stay. Overnight, at most. I also don’t expect to hurt as much as I did after the phase I, where I had two surgical sites. This time it’s only one (well, one and a half), and it sort of feels like familiar territory. I feel like after the phase I, phase II will be a piece of cake, relatively speaking.
Then I happened to be looking at one of the discussion boards on the breastcancer.org website, and read a post written by one of my sister flapper’s phase II, wherein she mentioned she has two drains. Head slap! Crap. I’m going to have drains again. Don’t get me wrong, I am grateful they have such a thing, as they give the fluid trying to fill the vacuum left by the surgery a place to go, until such time as the tissue heals itself. But they are also kind of like having an extra appendage. Three hands SOUNDS like a good idea when you’re wrangling kids or pots on the stove – but more often than not, you find it gets in your way when you’re trying to go about your usual activities. You have to make allowances for it, you see. More clearance when using the bathroom or getting dressed. Always worrying about where it is when you’re taking a shower, hoping you don’t catch it on something. I guess an extra hand you could get used to, but the drain you hope you never have to get used to!
I had two drains after my mastectomy, and one after the DIEP flap reconstruction (I was lucky; some women get three, or even four!). I don’t know what to expect after my Phase II. For some reason I keep focusing on the left breast, always forgetting my right breast will be getting some “tweaks” as well. And where exactly are they getting the fat, for the above mentioned fat grafting? And will those “harvest sites” need drains, too? I think I’m going to stop thinking about this now….
Hopefully my recovery will continue, and after the Phase II I’ll be done with surgery and anesthesia for the year. I’m behind the mental schedule I set for myself in February of 2013. I honestly believed I’d be complete with everything in one year. Surgery, treatment, reconstruction, recovery, and back to my old self like I was before breast cancer happened to me. Ha! I forgot, I had Stage 3 breast cancer, and aggressive treatment for 10 months, plus recovery time before I could even schedule reconstruction. I’ve been doing this for a while, and still I find myself saying “Well, this is the hard part. After this it will be easier.” As I’ve mentioned before – it’s never easier, it’s just different.
I’ll have a couple more procedures after this Phase II, but nothing like the last three surgeries, or the chemo, or the radiation. Really just cosmetic stuff, but still part of the process. And I’m sure I’ll be thinking then “Oh, I’ve already been through the hard part, this next part will be easier.” And I’m sure I’ll be just as amazed to discover yet again - it’s not any easier, it’s just different.
I’ve noticed and commented on it my whole life, yet it never ceases to amaze me how my real life experience changes my priorities.
Readers of this blog know all too well what I obsessively worried about when I first began treatment for cancer. The side effects from chemo were no joke – nausea (we have medication for that now), heart damage from the taxol (years from now) and lung damage from the radiation (small possibility, but by no means a certainty – I’ll worry about it when and if the time comes). What I was obsessively concerned about – when will my hair start falling out? Every time I shampooed, I asked myself – Is today the day? Is today the day it comes out in clumps in my hands? Sometimes I’d get out of the shower and just sob – my loss of hair wasn’t total, but my already fine hair was becoming increasingly thin. I knew I should have it cut very short, but I dreaded going to the salon, leaning back into the shampoo sink, and worried that that would be the moment my hair as a unit would simply fall out into my hairdressers hands. It didn’t.
After a time, though, I finally made an appointment to have my hair completely shaved off. The woman who shaved my head was wonderful, and I was surprised at how normal it felt to talk to her about it. When it was done, I didn’t wear the scarf or hat I had brought with me to wear out in public. It just didn’t seem like that big a deal, and in the short walk to the car I wasn’t worried about anyone seeing my bald head. Anyone following this blog knows that often during my treatment I would frankly just forget I didn’t have any hair, and would be surprised when someone would notice. Plus it was the middle of the summer, and I was having hot flashes from the chemo, so quite often I would look at people with a full head of hair, and wonder how they could stand it.
Being a one-breasted bald woman was also strangely empowering, as I found out one day when a salesman came to the door, unfortunately for him when I was in one of my “moods” (for details, see post “Bald Is Power” http://wp.me/p3b1hy-7g). So much for loss of hair being the end of my world.
Now we’re through with what I considered the hard part, treatment, and I can collect my reward, the tummy-tuck reconstruction. Yippee! I survived the first surgery, 20 weeks of chemo, and 6 weeks of radiation. We made it through the requisite number of weeks recovery, it was now time to plan the surgery. The preparatory phone calls and discussing the schedule for 3 weeks before, 2 weeks before, the week before, the night before, and the morning of the surgery. Crap. Now I’m remembering the details from the first surgery, and I start worrying and obsessing about everything. Ugh. More incisions, more drains, more IV needles, more pain. What was I thinking? Do I REALLY need two boobs?
Before I had even begun my treatment, I so looked forward to the reconstruction. The words “tummy tuck” breast reconstruction were nirvana to me. A new boob and a flat belly would be my reward at the end of the battle, after getting through the mastectomy (which I thought was the hard part – fool), the chemotherapy, and the radiation. As we have since learned, all the treatment was nothing compared to the endurance it has taken to get through recovery. What a slog.
However, once we started to get close to reconstruction surgery day, I started to worry about waking up in the recovery room. Well, waking up, period. It’s always a risk, isn’t it, when you go under anesthesia for surgery? Then I started worrying about pain management. I don’t do well with most pain medication, but I learned the hard way, after the mastectomy, the groggy, zombie-like feeling I had on the pain medication was infinitely better than digging myself out the pit of despair I’d gotten myself into by thinking “my pain’s not bad enough for a prescription drug.” Ha!
And then there was the constant nausea I experienced the last time I had surgery - I couldn’t even keep the anti-nausea medication down! But thankfully, we found something that worked for me (a scolpolomine patch, which is applied behind your ear), and so I was able to apply that experience to the new surgery. A conversation with the anesthesia team, and I was able to get what I wanted – the patch to prevent nausea, rather than experiment with various medications to combat the nausea – before I woke up in the recovery room.
But you know what kept nagging me at the back of my mind? The thing that really had me questioning if this was the right procedure for me? I knew I would end up with a smaller cup size at the end of this, than I had when I began it. I liked my boobs they way they were! Can’t we just put in an implant the same size as my tumor was? But when I signed up for this, all I could see was a flatter stomach – my reward, right, for having a boob cut off?
Fast forward to post surgery. I am back home, Ken and I settle into a routine – I sleep in the recliner on the main floor, but I call him on his cell phone whenever I need to use the bathroom, as we have no bathroom on the main floor (who’s the idiot who fell in love with a house in which you must either ascend or descend stairs to find a bathroom? Oh, yeah. It was me.) and I am not to be trusted going up or down on my own. The first couple of days, I have to pee every two hours, disrupting Ken’s sleep, but less so than if I took a spill down the stairs and end up back in the hospital, so we deal with it. By the end of the first night, I think Ken’s so used to it, he can spot me during my nightly stair climb in his sleep. But by the end of the second night, it’s getting old for both of us, and I’m fed up with sleeping in the recliner. My feet hang off the end, due to the quantity of pillows around and under me, which exacerbates the neuropathy, and makes my feet feel cold. I’m under doctor’s orders to avoid coffee, so this, among so many other things, is off the charts frustrating. My mood is irascible, when I’m not sleepy, or a puddle of tears. Sometimes even when I’m a puddle of tears, and I feel as if, sympathetic as he is to my troubles, my husband doesn’t fully “get” how terrible this all is for poor little put-upon me. I can’t use my right arm, I can’t have coffee, no one does the dishes the way I like them done, and I haven’t pooped since I came home from the hospital. Again and again I ask myself – what have I done? I was feeling pretty okay (so I had neuropathy and no stamina – at least I could use both arms, I could bend at the waist, and I was pooping fine!), why did I DO this to myself? I think that was the worst. I CHOSE to do this. I have energy to shower only about every three days, I can’t wear any clothes except camisoles and pajama pants, and I don’t want anyone to see me, other than my husband (he’s seen me worse) and my daughter (she’s used to seeing me look like a slob).
But gradually, the effects from the pain medication wears off, and I have my two-week post operative visit with my reconstructive surgeon, who gives me the all clear to return to my first love, coffee. After that I have fewer hours of self-pity and sadness, fewer episodes of unexplained crying (“Poor mama. You need some coffee, don’t you?” my wise 0-year-old once observed), and other than one frightening run to the emergency room in the wee hours of a Monday morning (I was pooping by this time, but apparently not enough, as I was painfully constipated – sorry to be so frank, but there it is), things have been steadily improving. I can go up and down stairs by myself. I can stand up in the shower (though I’m still very careful, and I worry all the time about falling), and I can do a load of laundry. Oh, and my caffeine consumption is up to a level that I find beneficial to my mood, as well as motility (nothing like coffee to get things moving).
I can now wear a soft, stretchy bra (so my one remaining original breast has support as well), and this past Monday I was able to put on a pair of jeans over my yoga pants, and zip them up. I’m told that some “flappers” (the adorable term used by posters on Breastcancer.org, to describe those of us who have had a DIEP flap breast reconstruction) have swelling in their abdominal area for weeks or even months after surgery, and being able to wear a pair of jeans over bike shorts or Spanx is a huge deal. For me, it was just exciting to have something different to wear, even if it was a little uncomfortable, and I did in fact take my jeans off immediately once I got home.
I’m now about 8 weeks post surgery, and I’m pleased to say I’m taking all of these milestones for granted. My hair is growing (still have some chemo curl left), and so now I have to do something with it when I go out of the house. Well, I don’t have to, but at least now I think about it, and sometimes I even give it a try.
Sometimes I brush against my new boob, and for a split second, I think it’s just the pillow padding that came with my surgical bra. Then I remember, I have two boobs again! And then I have to have a sneak a peek at my chest. Oh, I have cleavage again!
And you know what? My new boob doesn’t have a nipple yet, it’s sort of a funny shape, it’s got a couple of divots, and it’s surrounded my scars. It’s smaller (for now) than the “natural” boob, but it’s perky, it’s soft, and it’s warm. It’s all me, and it doesn’t contain a big, fat lump of cancer. And I love it.
I wonder if this is how astronauts feel?
Three days out from surgery day, and I’m starting to tweak out. I have only one half of a Xanax left, and if my primary care physician doesn’t approve a refill, I need to save that for surgery day just to get me in the door of the surgery center.
I’m waiting on the call from the surgeon’s office, to tell me when I need to check in. I had planned to veg out over Perry Mason and forget everything else, but I have not been able to relax. I keep thinking about how after this weekend, when Michaela goes back to school, I will be going into surgery. And I. Am. Freaking. Out.
We’re 11 days out from stage I of the DIEP flap surgery. It’s sort of daunting, thinking about what I’m about to undertake, and how much I have ahead of me, and how much I’m going to be hurting. Then there are the incisions and drains, and worrying how I’m going to wash my hair when I can’t lift my arms over my head for at least 4 weeks…
Then I think about how very far I’ve come already, and I know. I’ve got this.
For those of you keeping track, my initial reconstruction surgery is now scheduled for May 27. I say “initial” because I had assumed, and perhaps you did too, that reconstructive surgery meant “one and done.” It does not.
We have the first “big surgery”, then when everything settles, we follow that up with another surgery. Not as long as the first one, but we’re still talking anesthesia, stitches, and a hospital stay.
Then we have two more minor procedures, to encourage symmetry and an even appearance. To be frank, the surgeon builds a nipple for the new boob, and then we tattoo an areola, if I choose to do that. Apparently some women don’t. Can you imagine? I guess you’d get used to it.
Before we do ANY of that, I have to have a couple of scans done so that Dr. N can find all the blood vessels he needs to move tissue from my belly in order to build the new breast. I know I have to do it, I know the scans are easy, but I think I’ll be calling my GP for an anti-anxiety prescription refill just the same. Needles I can deal with, but those big white donut scanners, not so much. Too much time lying there with crazy $hit running through my head.
More details to follow.
Tina has seen her surgeon and is healing well. We have one more surgical drain to get out today. Soon showers without plastic and tape will happen and Tina is looking forward to that.
It has been a harder recovery than expected… because Tina does not do well on pain meds and there has been some muscle spasms… So we have had pain, dizzyness.. nausea etc.
We have pills and a patch for all this.. but it is a balancing act… We are improving.. it feels like this could be the week thinks start to get more normal.
Monday and Tuesday AM it looked like we were going to glide into an easy recovery….
That may be why Tuesday was crash day for me. Late Monday night I hit a wall of stress after we did her first shower. Surgery drains, newly uncovered stiches, plastic to keep things dry etc. Once we finished the stress of not “breaking” Tina hit me and then some. Pretty sure I am releasing stress I felt very little as I managed the last few days.
I slept hard.. and then Tuesday morning was mentally exhausted.
Tuesday AM Tina was up and doing chores.. I told her not to….
Then something got pulled there was sudden pain and the last two days have been tougher.. Periodic pain spasms etc. I seem to remember my triple wisdom teeth extraction was like this… it got better for 4 days then I had 1-2 days where it was really bad.
She is healing and we are in communication with the DRs… but right now pain management seems to be #1. Her surgeon thinks it may be that she didn’t keep ahead of the pain.. from what I see.. pain hits. creates stress .. creates more pain… Lesson of the day.. when you get a body part cut off.. its ok to take pain meds for a few days and not worry that you don’t really need them..
Thursday AM.. I am getting a bit better sleep but needing to use ZZZZQuil tabs to get down the last three nights..
I totally checked out from work…the last two days (which I hate… but I was mentally useless for intelligent work) watching email for emergencies etc. but I thought we were on track for an easy recovery week one…. not so much..
Michaela is sleeping on the couch to be close to mom.. and has been doing a good job letting me know if Tina needs something.. What good kid.. but I worry she is stressed and not willing to talk about it.
At some point we might get her some time with a consoler ….just to make sure.
Tomorrow we see Dr Javid who has been great this week.. even dealing with a problem where her resident didn’t return 3 calls in a row.. (she dealt with that pretty fast and it never happened again…)
And for those keeping score at home and who have bets pending with Vegas bookies… pathology game back…
- Tumor… 12 Centimeters (5 inches!) Sorry for those who bet on a more normal size…
- Single Mass… Good…
- Clean Edges Good…
- No skin or chest wall involvement.. good..
- 2 lymph nodes of the 24 removed affected good given the size…
That makes the final stage 3A which is where we were last week…. Sorry I have checked with Vegas and no one had all it all right.. so no jackpot winners this week..
Joking aside it was big hummer..that came from no where and was undetectable 10 months earlier by a DR doing a breast exam, and was even hard for them to spot on imaging when they were looking for it… Get your tests.. do your monthly exams etc.and get weird stuff looked at right away people!!!
That said it appears to be a lazy SOB of a cancer which is good..content to sit in one boob and get fat vs going out to explore.. so in general pretty good news.. Given SCCA’s stats on all stage 3 cancers.. I think we still have a very positive prognosis…
Quick update… recovery….
Tina is home.. we checked out of the hospital around 1pm Friday…
Our family room is now a dorm.. with Tina, Terrie and her niece all sleeping in the recliner / reclinder sofas.
the improvement over 24 hours is good. But she is still exhausted.. etc. But doing well. Pain management and the drains are a process to be managed..
May be a day or two before we write again.. just adopting the new reality.. etc.
I know I need to work off some stress. I drank three hard ciders this afternoon.. and barly got a buzz. Normally one would do it because we don’t drink alot. So sort of like pain meds I think there was stress it countered first….
7:55 am UW Surgery Reception
Tina, Terrie (sister) and I sitting talking about hair and being hungry. I will be live updating today on this post.
8:25 into surgery prep
Very “Grey’s Anantomy” back here.
9:00 am Surgery Prep
IV and agree to donate tissue for research. For half a zanex she’s pretty silly right now
9:25 Surgery Prep
Dr came in and marked the right boob which is the right boob to operate on. Tina dozing.
10:00am Surgery Waiting room
Tina got the first happy juice.. Now giggling…:) Terrie and I have moved to the waiting room Tina has been moved to surgery. They have promised periodic updates during the next 3-4 hours.
(I see people are reading today.. go ahead and submit comments if you want I will read them to her or she will read them when she gets out of surgery. You do that by clicking on the title for this blog entry and then on that page you can leave comments)
11:ooam Surgery Waiting Room
Got the first update call. Anesthesia and first incision went well. May be the only update from OR until she is out. Its a very straight forward procedure.
12:45pm Surgery Waiting Room
Got a new update call.. everything is going fine. Almost done DR will be down soon to give us the summary.
1:15 Surgery Waiting room
Just met with her lead surgeon. She is starting a 1-2 hour waking up process. But she is out, no indication of spread past the original diagnosis so in the new reality.. really good news.
6:00Pm From Home..
All is good I am home with our daughter.. Tina’s sister is with her and says she is getting better since I had to leave at 5pm. Even before I left while groggy and having nasia she was complaning about the loud chatter boxes in the next curtain.[which is a good sign :) ] they must have had 3-4 visitors behind the corner… Yammmer Yammmer Obama, Yammer Yammer multiple orgams, yammmer yammmer New tattoo on his head.. on and on it was like four 9 year old girls but it was adults. I nearly wanted to puke too…
We are tired.. and surley and happy to have completed this key milestone in kicking cancer’s butt.
Signing off have my daughter to entertain….
Ken – The HAPPY Husband..