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.
I haven’t written in a while – well, duh.
I think I’ve been pretending to myself that I’m my old self, the self that never had cancer. And I also think that is what prompted my mini melt down this morning. I was talking to my husband about how I felt my reconstruction was going, and feeling a little impatient and dissatisfied with this sort of in-between/half-baked place I’m at, and then telling myself I need to BE patient, when for apparently no reason I burst into tears. I mean ugly, red-faced, snot-dripping from my nose, hard crying. I wasn’t really upset about anything, but at the same time, I was upset about EVERYTHING, and apparently it’s all wrapped up in how damn mad I am at having no parents. Yeah, I know I’m supposed to be a grown-up, and I am responsible for my own feelings and actions, but sometimes don’t we all get a little fed up with being grown up and tough about all the shit that has happened to us? I know I do. My dad, who I always thought was so hard to talk to when I was growing up, I now feel was probably the one who actually listened and gave a damn about us kids and our hurts – even as he was trying to toughen us up, as he was always telling me. And now I don’t have him, and I’m pissed about how he was taken from us, but mostly I’m pissed at myself for not appreciating him until now, three years too f-ing late.
So I guess I haven’t been dealing with any of that, either.
Anyway, I’m thankful to have my cancer treatment behind me, I really am. I’m thankful that (most likely) all my surgeries are behind me. But I’m also kind of restless and dissatisfied with where I’m at, compared to where I thought I would be at. I really believed that I’d have everything all wrapped up, tied in a neat little bow, within one year. Mastectomy, chemo, radiation, and reconstruction. Oh, and I’d be feeling like my old self, too. Like this never happened. We all know the reality was no where near what I had envisioned in February 2013. So I’m a little grumpy about that. But it occurs to me, I’ve actually been given a HUGE gift. I get to completely redefine my life. I’m still mother and wife, and part-time bunny wrangler. But the rest of it I get to make it up from scratch. Why aren’t I happy about this? Everyone, at some point in their lives, craves a “Do-Over” button. Here I have one, a great big blinking golden Do-Over button, and I’m not happy. I am scared shit-less, that’s what I am.
So what do I do now?
What mostly got me through chemo and radiation was just to keep on going, and doing what the medical team told me to do. But that’s just a survival technique. What I’m trying to do here is take advantage of an opportunity to create a whole, new life experience for myself and my family. And there is not anybody who can tell me how to do that, and there aren’t any guidebooks out there, at least none that are specifically for my experience. Because that – I’m going to have to discover for myself.
I am now five weeks out from my primary reconstructive surgery. Things are progressing pretty well, which even three weeks ago I wouldn’t have believed.
I came home zonked out on pain medication, and extremely emotional. I couldn’t get up the stairs by myself, and using the bathroom was a bit intimidating. I couldn’t stand up completely straight (that changed pretty quickly, however) and I wasn’t allowed to use my right arm to lift or pull anything – including pulling myself up the stairs using the handrail. I looked like Frankenstein, with a grisly looking smile-shaped incision on my abdomen, my scabby new belly button, and the constantly changing (not apparently for the better) “boob.” I don’t remember that I had a great deal of pain, but after what I experienced with the mastectomy, I was terrified to get into that particular circle of hell, and kept on top of my pain medication. So I didn’t hurt that much, but I still cried a lot. I asked myself, “What the hell have I done? So I only had one boob, at least I could use my arm, I could bend at the waist to unload the dishwasher, I could clean my kitchen! I could drink coffee, for Pete’s sake!” So I cried and cried, and wished I hadn’t done this thing, and Ken did his best to soothe me, and convince me that one day this would pass, and I would be glad I had done it. One day we were wracking out brains, trying to figure out where my emotions were coming from. Was I afraid of something? Was I simply frustrated? What could be behind it? When my 10-year-old walked into the room, sat down beside me, patted me on the head and said “Poor mama. You need some coffee, don’t you?” I blinked at her, then started to laugh. The grown-ups were twisting themselves into knots, and my little innocent child put her finger right on the problem. I won’t say my emotions settled down after that, but it was easier to coast through them and be patient, and to wait until my post-op follow-up with Dr. Neligan. And sure enough, at my follow-up, he gave me the go-ahead for resuming my regular diet, including coffee. Halleluiah!
When I first got home from the hospital after the surgery, I had to pee every hour and a half to two hours, and there are no bathrooms on the main floor where I spent the first two nights. Which meant I had to wake Ken to come downstairs in the middle of the night to push my butt up the stairs, and wait to brace me from falling on the trip back down. Needless to say it was a HUGE relief to both of us when Ken fixed up our bed so I could sleep in our bedroom, and still have my torso propped up as per the hospital discharge instructions. I still needed his help to get me OUT of the bed in the middle of the night when I had to go, but at least we could cut out the mountain climbing just to get me there. And after a few days, I could get myself out of bed and back into bed, so he could sleep at night again. Until about 3 weeks ago, that is.
One Sunday night, I was having pain in my belly, which, to be frank, felt like horrendous gas pain. I took an anti-gas tablet, and felt a little better. We went to bed around 11pm that night. About 3:30 in morning, after waking with pain throughout the long night, I tried to sit up, or raise my legs, trying to find some position to relieve the pressure, and release the gas. After about an hour of whimpering, I was in the bathroom, sweating and clammy all over, crying in pain, which soon turned to screams, waking Ken immediately and bringing him to the door of our bathroom, asking me what was going on. I was in so much pain, I couldn’t even articulate what I was feeling. I was like a mute cavewoman, not able to understand how to respond to his questions, only crying out in agony. At that, he went across the hall to wake our daughter, after declaring to me that we were going to the hospital. I wasn’t sure I could get downstairs to the car, much less sit in it while we drove to the nearest emergency room – and I was definitely sure I couldn’t make it all the way to the UW Hospital, even though if my pain was connected to my recent surgery, I knew well enough that I should suck it up and go there. But the pain subsided, the sweating stopped, and we all got ready to settle back down to sleep, when another wave of pain hit me, and I was screaming again. That was enough for Ken, he hustled us all down stairs, into the car, and we were on our way to the nearest emergency room, Ken and our daughter wearing sensible clothes, me still in my purple polar bear jammie pants. Yeah, I was looking great.
We got all checked in, when another wave of pain hit, and the nurse quickly put me in a wheel chair and raced me down to an exam room, my husband staying behind to get out terribly frightened little girl settled in the waiting room before coming back to join me. I never like to leave her alone anywhere, but I guessed she’d be safe in a hospital waiting room, especially as she was under the watchful eye of the check-in nurse. She was fine the whole time, though after we were home she told me there was one sort of creepy dude that passed through, asking her if she was feeling bad. No, she said, just waiting for my mom. And that was the end of the conversation.
Meanwhile, I was dealing with my own crap in exam room 8, answering questions, having stuff stuck all over me to monitor my heart, and having countless (I’m not kidding, I lost count) needle pokes, each of the nurses and medical techs taking their turn trying to find a vein, then finding themselves unsuccessful in squeezing any blood out of me. I had bruises all over my left hand for over a week after that. The on-duty emergency room doctor was trying to rule out what my issues weren’t, before he could hazard a guess as to what they were. But, no blood, and after a while I announced I’d had enough, and was ready to check out of there in frustration. We’d been there a couple of hours by then, I guess, Ken going out to the waiting area occasionally to check on the kid, or bringing her back to sit with us – until they got their poky needles out again, then she and dad went back to the waiting area. Ken came back, but the kid decided to call it a night, and wait for me until it was time to check out. The nurse at the check in desk found a blanket and a cuddly toy for her, and she settled down to watch the early morning kid shows on PBS.
In that time, we’d had a shift change, and I had a new emergency room doctor on duty, and after consulting with the doctor just wrapping up his shift, we all decided the blood draw wasn’t going to work, and so decided to proceed with other diagnostics. I have to tell you, I almost kissed him when he sat down next to me and gave me his theory (constipation, not appendicitis or drainage fail), then described the symptoms of that theory, which mirrored exactly how I felt, and which I hadn’t been able to articulate. So he sent me to get x-rayed, which the tech did with me lying down, after the doctor had told me I would be standing up. I didn’t protest however, as I just wanted to get the heck out of there, and so I survived it. About 10 minutes later, after I had gotten back into that torture device called a hospital bed, I needed to use the bathroom. No productive action there, but I made it down there and back under my own power, and without an incident of pain. Yay.
Another 15 minutes goes by, and the doctor comes back to show us my x-ray. Yup, the source of my pain is indeed a surplus of poo, and I was massively backed up. How embarrassing. I’m in the emergency room, and I’ve wasted everyone’s time because of constipation. But at least I’m not facing another surgery. The doctor goes back to write up my prescription (over the counter Miralax to start the next day, after a single 296ml dose of saline laxative that day), and set my discharge papers in motion. Oh, and no more of the prescription pain meds, which contribute to the constipation. I only had one more pill to go, and I wasn’t sad to give it up. Dr. Neligan’s nurse had told me earlier that week that is was common practice to go home with a prescription for paid meds, and to have one refill, and only one. They like to have patients go back to over the counter pain relievers, though you are allowed to call them for something stronger if you need it. The prescription made me feel sleepy, and I don’t think it helped my mood any, either. So no, I was happy to give up the “good stuff” a few hours early for Advil and my regular mood altering substance – caffeine. The good news is, once we got home from the emergency room visit, I didn’t have any more screaming episodes. We had productive visits to the bathroom starting about 90 minutes after I took the yucky tasting saline concoction (which you can buy over the counter at Walgreen’s, in case you need to know). No more cramps or spasms after that, for which I am extremely grateful. It’s nice to be free from mind-altering pain. It let’s you focus on other things, like recovering from surgery and building your stamina so you can do important stuff, like empty the dishwasher all by yourself. So, maybe it wasn’t a waste to go to the emergency room after all.
The lesson I learned after the first surgery – stay on top of pain medication. The lessons learned after this surgery – 1) Stay on top of your pain medication, but get off the prescription crap as fast as you can. 2) Sometimes the simplest answer is the solution to a great problem. Oh, and 3)When the discharge nurse tells you to get some Miralax and take it, it’s not just a suggestion. Fool.
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.
I took my first dose of Tamoxifen today. I set my phone alarm for 12:30pm every day, because you’re supposed to take it around the same time every day.
One of the side effects my doctor talked to me about was increased chance of blood clots, so I figure if I drink one glass of red wine every night, I’m good.
Red wine is good for that, right?
That’s my story and I’m sticking to it.
I have a confirmed date for my port removal procedure. They call it a conscious sedation procedure, which means I’m awake through the whole thing, but I’m not “don’t freak out” juice during the procedure. It’s not happy juice, that’s for darn sure. I sure didn’t feel happy when the put that port in me (though I’ve been very grateful they did – can you imagine the beating my veins would take if I had to do chemo that way? Yuck!), like I was rolling down the hall to the OR for my mastectomy. I wasn’t exactly singing, but the nurse did say she’s never seen ANYONE as happy to go into surgery as I was. That was some good juice! But the conscious sedation stuff just keeps you sort of calm and distracted during the procedure. Waiting for the x-ray to confirm the placement was correct, I was a puddle of tears in the hallway. Partly it was due to the fact that I was traveling to Vancouver to testify in a murder trial later that day. But the nurse told me that the goofy juice also makes you very emotional. Great.
I don’t feel pain when the cut into me or stitch me up. But I felt pretty crummy in the recovery bay after the placement procedure, so I expect I’ll have a similar experience next Tuesday when they take this thing out. There will also be blood, and sutures, and gauze, and lots of ugly bruising.
But at least we’re moving forward.
Just a note:
I saw my new doctor. Don’t like him as well as my old.. but his does offer options and I am sure is a good doctor.. just very terse and business like.
Got an EKG.. need to get blood work-up to watch for other problems.. BUT everything looks fine.
I was having palpitations.. something I have had off and on over the last 8 years.. but pretty frequent over the previous few days.
We talked about options… ended up with a basic prescription for Valium for 30 pills. So far I have taken two, once each of the first evenings. That seems to have done the job.. got me down to a better baseline and everything seems better.
So, so tired today…
Taking ibuprofen, but that doesn’t really help with the neuropathy. My feet are numb and tingling all over, not just the bottoms of my feet, but now the tops as well.