November 30, 2014
What a difference a day, or even a few hours, can make.
Last night I was just about at the end of my rope with the drainage from my left boob. It seemed like for days all I did was change the dressing, worry about changing my dressing, or washing clothing because my dressing failed to catch all the drainage. Then it seemed like I had another drainage site open up on the underside of my boob, and stuff was starting to drip out of that site, too. WTF!
This morning I go to take a shower, and gunk is coming out all over the place. I get out of the shower, and hold some gauze over both sites while I get a robe on. I see that the site on the underside of my boob actually has a huge freaking clot trying to work its way out, so I grab some more gauze and try to palpate around the site, and pull out one, two giant clumps of jellied, old blood. Looks to be about 2 ounces, perhaps. I don’t know what to do. Do I pack both sites, just the top, just the bottom, what the hell? I slap a surgical pad over both and call the after-hours line – again. He says do what you’ve been doing – for both sites – then call the clinic in the morning.
I go back to pack both sites, and I notice that the original site has closed up. Yay. The new site is still draining, so I do my best to pack it, and cover it all again with surgical dressing.
Tonight, I go to change the dressing, and it’s a lot less fluid, and the gauze wicking is sort of mauve, and so is the drainage on the surgical dressing. I think maybe things are improving. Yay, again.
The thing I’m not so happy about is the fact that the new site is big enough I can stuff the wicking in with my fingers. Ugh.
Good news again – it seems like I can’t get very much wicking into the new site. Maybe that’s because it doesn’t really stay, or at least I don’t feel like it does. I guess we’ll see what they say at the clinic when I call again tomorrow.
Monday, December 01, 2014
Called the clinic this morning, spoke to Ellen in Dr. Said’s office. She told me that Dr. Said’s magic potion for promoting wound healing is protein, protein, protein, and vitamins, especially vitamin C, A, and Zinc. Otherwise, she said keep doing what I’m doing, including packing the gauze tape in the new wound, and they will see me in the clinic at my follow-up appointment.
I feel pretty comfortable with how things are progressing – yesterday was obviously the “getting worse before it gets a crap ton better” stage. The drainage smells better, and the color is lighter, sort of a pinkish tan instead of the gruesome purple-black jelly I’d gotten used to. It’s still “ew” but taken in perspective, I’ll take this week’s “ew” over last weeks “ew.”
Plus I’m back to changing the dressing twice a day, instead of 4-5 times a day, and changing my clothes three times regardless because the dressing couldn’t keep up with the drainage. And now it seems as if I can shortly put this messy chapter behind me.
I’m hopeful, at any rate.
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.
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.
Chemo ages you.
I’m convinced of that.
Just over one year ago I was walking a mile every day to work, and sometimes another mile between offices during the day.
Yesterday, I had done one load of laundry, one load of dishes, made lunch for Michaela and Ken, and then lunch and tea for myself, and after than my legs were heavy and my feet were in pain.
It amazes me to think that a mere 14 years ago I was stomping all over London and the British countryside for 10 weeks, and I was rarely as tired as I am right now.
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.
Tomorrow is my third appointment with the micro-vascular surgeon who will perform my reconstruction surgery. Right after we met with the medical team to talk about my plan for dealing with my Stage IIIa breast cancer, I looked forward to this final stage of the plan. After the tumor was out, and I had made it through 20 weeks of chemotherapy, and 6 weeks of radiation, reconstruction with a bonus tummy tuck (I’m having a DIEP flap recon, which takes tissue from your belly to build a new boob) sounded like the wonderful prize for getting through a long and difficult journey. The hard part behind me, a new boob and a flatter stomach – sign me up!
However, right after my mastectomy, I seriously considered not going through with it. Actually, for several months after my mastectomy, I considered not having the reconstruction. The mastectomy took only 2-3 hours all told, while the reconstruction will take 8-10 hours. I had initially thought that the mastectomy surgery would be the hardest thing I had to go through – I had to survive the anesthesia, after all. That’s what I was truly afraid of. I thought once I woke up in recovery, the hard part would be behind me. I wasn’t truly worried about the chemotherapy or radiation, or the recovery. I honestly believed that recovery from removing my breast would be as simple as taking some Tylenol. Dummy.
It turns out that removing my 11.5 centimeter tumor was the easiest part of this whole thing, for me. They gave me the happy juice before I went down to the OR, and probably 15 seconds after I got in there I was off to La-La Land. Waking up in recovery was completely different than I had envisioned. It was traumatic. I felt all over sick, in pain, and disoriented. I couldn’t really communicate, I just laid there and whimpered. I’m not sure my conscious brain was fully aware of what was happening – in that moment my primitive lizard brain took over, and it only knew that things did not feel normal, and that we did not like it. Looking back on the experience, the conscious brain knows now that what I experienced was normal for me. But in that moment, and for months of nausea and muscle spasms afterward, it was only trauma, and not something I wanted to experience ever again.
I experienced that fear before I even met with the medical oncologist to go over the plan for chemotherapy. Since that time, I’ve been through a few other things that once frightened me. I had completed an endometrial biopsy as part of my diagnostics before the surgery, which came back benign. Right before I was set to start chemo, I argued with my first medical oncologist for three days when she insisted I repeat that extremely painful procedure, and could give me no good reason why I should, and then became insulting when I asked to speak to the gynecologic oncologist who had done the biopsy. I changed medical oncologists, and I have completed 20 weeks of chemotherapy.
I have testified at a murder trial, and seen the verdict and sentencing of the guilty party. I watched the whole nightmare of my father’s murder age my extremely vital and resilient grandmother, until she finally decided it was time to go, having seen the guilty party duly sentenced, if not appropriately punished. I don’t know if there is an appropriate punishment for the evil that was done to my father – at least not on this earth.
I have also completed 6 weeks of radiation, and I have had my chemotherapy port removed.
With all this behind me, I am now able to look forward to what the micro-vascular surgeon has to say, and I can honestly say the fear I experienced last spring is not with me today. Whether that comes from the fact that the memory of that experience has faded, or if because I know I have faced worse and survived, I really couldn’t say. I am not sure that I care. The fact remains that reconstruction is neither the prize at the end of the journey, nor a terror I must survive in order to get back to normal. It is simply one more fact of my life.
When I was receiving the chemo dose of taxol at the halfway point, my oncology nurse commented, “You’re at the top of the mountain!” Looking back on that, I can see now that she meant we were at the zenith, so to speak, of my chemotherapy regimen with taxol, and I could begin the countdown to the last one. Which is something to celebrate, even though I still had 6 more weeks to go, and nothing had changed about my situation at that moment.
At the time, I was thinking “Yay! All down hill from here!” Never having climbed to the top of a mountain, I of course knew nothing about what it actually might take to come down off the mountain. I was all about “Yes! We made it to the top!” Little did I consider that coming down the mountain is just as hard and treacherous as climbing up. Perhaps more treacherous, as you are moving in the same direction as gravity coming down, and your chances of falling on your ass increase as a result. Still, I’m no quitter, so I’ll just keep on truckin’ cause I sure do want to get off this freaking mountain. I didn’t want to climb it in the first place, but I got chased up here by that damn tumor, so it was climb or perish and here we are. Now I get to pick my way down, oh-so-carefully, and I already know I will not reach the bottom unscathed. I have quite a collection of bumps, bruises, and boo-boos already, and the big finale still to come.
Just when I learned to take certain things for granted, like putting on or taking off a shirt over my head.
One week out from the port removal procedure, and things seem to be healing just fine. I had a good cry last week after I had it done. I don’t know if it was left over from the sedative they give you, but that whole next day I was a bundle of tears. First I cried because I couldn’t believe the chemo was over. Then I cried because the radiation was done. I cried because for the most part, the heavy stuff is over with, and it’s all recovery from here (which we know is heavy stuff all on its own). I cried over Ken’s procedure, and volunteered to have my own baby making equipment put out of commission. I told him I would do it because I was used to it. He just laughed, of course. And of course he was fine on Friday, and every day afterwards.
This morning he’s picking up the school auction catalogue and taking the kid to school. I’m home looking for socks to wash, which is a treasure hunt/obstacle course, as Ken hides them from me. Not really, but I’m not kidding, it’s like an Easter egg hunt looking for peoples socks in this house. Especially if they’re dirty, and the wearer is out of clean socks.
So I’ve been looking for his dirty socks to wash, as I have no idea how long he’s been running without a clean pair – he doesn’t tell me, he just finds a pair of not-too-dirty socks and wears those. He mentioned he took his shoes off at the doctors office on Friday, and put them right back on again, because his socks were not clean. I felt bad about that, sending him out the door with dirty socks. He works hard, and has been running around like a crazy person for weeks chasing down content for that auction catalogue. The least I could do is keep him in clean socks and underwear, right?
Which is why I’m poking around here this morning, on a mission to find socks. I found a few, and I’m not sure they all match one another, but into the wash they go. He’s got a big day today, and the man deserves clean socks to wear why he goes out to conquer the world.
But now I’m exhausted from hobbling around here, and all of the stooping over, and looking in hampers and under dirty clothes on the floor. And it’s not even 9am.
Port is coming out today!
After 20 weeks of chemo, 6 weeks of radiation, and a few weeks rest break, my beloved little purple port is coming out today.