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.
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 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.