Mama’s Head
While the Mr. and I were on vacation at the Oregon coast, we did a little shopping at the outlet mall in Seaside. We had a nice bottle of wine from my boss, which we had been saving for our anniversary trip, and I wanted to find some stemless wine-glasses. We were on our way to the kitchen shop, and happened to look in the windows at the Dress Barn on our way. I’ve never been in a Dress Barn. I have no idea why that is, they have one in practically every outlet mall I’ve ever been to. Never saw anything to draw me in, I guess. But something we saw in the window at Seaside caught our collective eye, and we decided to check it out.
I’m rather conservative when it comes to choosing clothes for myself, so I tend to ask the Mr. for his input along the way, and sometimes I just go with what he picks, unless I really REALLY don’t like it.
On this trip, I found two skirts that I was comfortable with (muted colors and patterns), and the Mr. picked one with not outrageous colors, but very vivid colors on a white background. Also, it was a LOT of fabric. A lot. As in full circle skirt, and from my waist to well past my toes. I could have worn the waistband around my chest, and still been well covered. Now I like a longer hem on a skirt, as it covers my chubby knees and my pale shins, and I can wear them without stockings or hose. But this was a bit much. Very long, and as I said, a lot of volume. I was inclined to veto the skirt, as I find I look better in fitted garments rather than in flowy. But the Mr. loved it. “That’s not a skirt for work. That’s a party skirt,” he declared. With that, I could suddenly envision myself floating through a summer evening at a backyard barbeque, a festive and fresh hostess. And so I agreed it was on the list of items to take home.
About two weeks later, it’s Father’s Day. As usual, I’m frantically finishing up my potluck items (tomato-basil-mozzarella salad dressed with a little balsamic, and a rather fabulous coconut cake), having completely given up on any idea of fixing my hair or my daughter’s. Barely giving myself time to get cleaned up, much less plan for trying on and changing outfits, I grab the too long skirt (Father’s Day is a backyard barbeque after all), and pull it on, old man style, right up under my chest, so I won’t trip on the hem. It’s still to my ankles. Oh, well, no time to try on anything else, so I go with it. Grab my favorite go-to black Mossimo tshirt with the keyhole back, and call it good. I wear my shirt untucked, so no one can see how high I’ve pulled the waistband. Only my husband and daughter know.
Once we have arrived to my sister-in-law’s, and safely delivered our contributions to their respective tables (my cake looks glorious on its white pedestal in the middle of the dessert table, like the belle of the ball) without my tripping over the hem of my skirt (a true miracle), I don’t think any more about what I’m wearing or how (i.e., Grandpa style) for the rest of the afternoon. Which I should have thought was significant, but didn’t. My husband did, however, which I should have also thought significant. I guess I complain a lot more than I realized, and he also noticed more than I expected.
If you have been following this journey for a while, you are well aware by now that I have had a lot of surgeries (well, maybe not a LOT), and hence a lot of scars. I had the mastectomy scar where they took my right breast. Now I have new scars at the mastectomy site where they built a new boob, and a large scar from hip to hip where they took belly tissue to build the new boob. I also have scar tissue under the “natural” breast where another surgeon reduced the breast to better match the “fake” breast. All of these scars tend to leave me rather uncomfortable in all of my clothes after a while. My bras (going braless isn’t really comfortable, either, by the way); the waistband on every pair of pants or shorts I own; my underwear; and even the waistband on some of my skirts. Waistbands usually sit right on my belly scar. Right ON it. Not a problem when I first put my clothes on, but after a few hours I start thinking about how much I want to get home so I can take off whatever I’m wearing, as most things irritate my scars, even though some of them are a year or more old.
Like I said, I guess Ken must have noticed my lack of complaining, as he commented that I should write a post about survivorship and a too long skirt, and how it would be good to define the benefits of owning a skirt that was too long. At first I was like “Huh?” Then he pointed out that a too long skirt, one that has to be pulled up so high, as in above an easily irritated scar, is a good thing to have, and that this would be good information to share out to the blog, in case other women are going through a similar experience.
So here we are.
I have another, shorter skirt (knee length or a little longer) which is sort of stretched out at the waist (I used to weigh quite a bit more, when I was doing active chemo and for a while after). It’s purple and white, it has silvery spangles all around the hem, and it’s cotton. I have been wearing it a lot in the evenings, since it’s been so hot here. It feels cool, and it doesn’t rest right at my scar. It’s usually slipping down to my hips, which can be a problem when I stand up. If I’m not paying attention, my rear-end will be hanging out the back of the skirt, and truly, no one wants to see that.
I hadn’t thought about it until just now, but I have been pulling that one up a little higher, above my belly, as well. I don’t wear that one out in public (much), as in addition to the stretched out waistband, it also has a big blue blotch on it where I spilled ink all over myself last summer, and some of the spangles are coming loose. But it’s my favorite thing to wear around the house to feed the rabbits, or do laundry, or watch television at night with my husband, so I don’t plan on giving it up anytime soon, as funky and scruffy as it is getting to look.
Because at the moment, I’m pretty funky and scruffy, too.
Survivorship and the Beach
Sunday 6/14/15
It was our wedding anniversary trip, and Ken and I were wrapping up our weekend at Cannon Beach. We had been planning this trip for a year, and talking about it for about 6 weeks, starting conversations with “When we go on our trip, we should…”. And I for one have been thinking about it pretty obsessively for about the last 10 days or so
It’s been such a long time since I’ve been here – maybe since 7th grade. I LOVE the beach, and I think everyone I know gets dreamy eyed when you mention Cannon Beach, Oregon, in particular. I know I do.
We went for our walk on the beach the last night at low tide. I am disappointed to report that it doesn’t smell the same as I remember from my youth. I suppose it’s because of my sinus issues. Bleah. Wisdom is lovely, but getting older sort of bites in a lot of ways. My sense of smell is off, so of course is my sense of taste, so food is not the experience it once was, with the occasional notable exception, such as our dinner the first night, simple fish and chips at the Driftwood, but oh, my! I don’t know what magic their chef works, but that fish positively melts on your tongue. But I digress…
Not surprisingly, after a full day I was tired and quite ready to leave LONG before Ken was finished taking pictures. Let’s get one thing straight right now – that man is never actually “finished” with taking pictures. But that’s part of who he is, and I love him, so what can I do.
The next morning, our last morning at the beach on this trip, we got up EARLY to walk down to the beach again for the lower low tide, so we could get closer to Haystack Rock, and I could find more shells washed up on the beach to collect for our daughter. When we went to bed the night before, I think I secretly hoped that Ken would change his mind about getting up at O’Dark-thirty. I mean, he has enough photos, right? (See paragraph above. Ha!) And I can get shells for the kid in a souvenir shop that will be perfect, intact, and CLEAN.
The alarm didn’t go off as planned, but as there are sky-lights in the ceiling of our little cabin, we’ve been waking up by 4:30 or 5:00am every day anyway. So at 5:26, our eyes popped open, legs stuffed into pants, feet into shoes, and we were off without even brushing our teeth.
Totally. Worth it.
Loads of shells for the kiddo (not all survived the journey), loads MORE photos, another 2 miles or more walking on the beach, and I had my FitBit light show soon after breakfast (10,000 steps, and before 10:00am).
But the real news, the really BIG deal for me. Walking on the beach, with the wind and the surf and the sand, I. Felt. Amazing. I was walking along, at a pretty fast pace, feeling quite a lot like my old self that morning. So good I could almost run in my joy. Better than I have since I began this friggin’ “Cancer Journey.” One year ago, I couldn’t walk 8 blocks without needing a break, without feeling literally as old as dirt, feeling so tired I wanted to cry. And here I was, on the beach, feeling young and LOVING life.
We have officially hit a milestone.
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.
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.
Grieving what was
I’m grieving today. Grieving for the young woman I once was. I didn’t appreciate what I had at the time. I guess everyone wants what they don’t have, somehow believing it better than what they do have. I regretted my large pores, my broad forehead, my prominent chin.
Like most women, I tried in vain to shrink my pores.
For a long time, I wore my hair long, and kept it pulled back from my face, even as I looked at my reflection in disgust, considering my giant forehead.
And I actually considered plastic surgery to “dock” my out-there chin.
Fool. Looking back at photos of myself at 25, all that I see is how beautiful I looked. All twenty-somethings are beautiful. They can’t help it. You’re young, your skin is taut, and dark circles under your eyes just make you more fascinating. It means you have an interesting life, outside of your work life. You roll out of bed, messy hair and rumpled clothes, and last night’s makeup. You look gorgeous. You don’t believe me now, but when you’re 40, look back at pictures of yourself at this age, and you’ll see I was right.
I look back at the image the 25-year-old that I was, and I grieve for what has been lost. The youthful outlook, the anything-could-happen-so-everything-wonderful-is-yet-possible mind set.
I’m no longer that young woman, with the quick, light step. I still believe anything is possible, and I will always believe in hope. But I have to hold onto that based on faith – I don’t have the energy I once had, and I sure don’t have the physical resilience I once had. And now I accept the fact that I am mortal. I don’t think I fully believed in death and mortality when I was in my 20’s. It seemed so far away, as to seem like only a story. Yes, that happens to some people. But not to me.
But today, I am disabled. At least for the foreseeable future. That is a hard truth to come up against. I am not what I once was. And I never will be.
I am strong. I am powerful. But I now walk with a shuffle and a little bit of a limp. I walk like an old woman.
In my mind, I see the image of who I was 25 years ago, and I see a young woman skipping down the escalator at Westlake Mall. I remember a young man, a stranger, approaching that woman, and asking her to have lunch with him, because he is so drawn to her.
Then I look in the mirror, and grieve.
I sit at my computer, and my hands begin to tingle as I type this. Shortly they will feel numb, and I will have to stop.
I get up from the computer to walk into the living room to rest my hands. I shuffle along, because my hips are stiff, and my legs ache. Where is that girl with the light step, now, I wonder?
I sit down for a while, putting my feet up, to take the pressure off my knees and my hips. I can’t knit, because that hurts, too.
I try to relax, and I have stabbing pains in my heel, I assume from neuropathy.
I am disabled. But I am glad to be alive.
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.
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.
Sheesh.