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        I remember when I used to think chain wallets were cool.  Then there were those necklaces for around the waist.  Waistlaces?  And what about the wired earbuds?  All of those images come to mind when I catch a glimpse of myself in the mirror.  I have tubes coming from different directions.  Thank God I don’t need a sleep apnea machine–I’d definitely be tied up every morning.

        They finally got me scheduled for the IV antibiotics.  When the Infectious Diseases nurse called me on Friday, she said I’ve got an appointment on Monday to come in at 2:30 PM.  “Um, I have an appointment with my plastic surgeon on Monday at 3:30 PM, and he’s over an hour away,” I told the nurse.

        “Well, you’re going to have to see if you can get that moved because otherwise you’re going to have to start antibiotic treatment on Tuesday,” the nurse said.  Well shit.  I don’t want to wait anymore–the radiologist said if we delay treatment any longer, I may lose my life. It’s already been a week since we identified this nasty beast.  I need to start the antibiotics like yesterday.

        “It’s important that I see my surgeon because he has to inspect my incisions to make sure that I’m healing properly.  He’s the one that has to clear me for chemo.  I’ll call them and see if there’s another time available.”

        “Okay, you do that, and in the meantime, we can get you started over the weekend, but you’re going to have to travel.  They don’t do weekend times near you.”

        “Yes!  Please!  I’m willing to travel.  I’m not healing properly because of this infection, and I have to heal in order to start chemo.”

        “Okay.  You try to see if you can get a different time with your surgeon and I’ll see if I can get you scheduled with one of the other hospitals for the weekend.”

        I immediately called my surgeon’s office. I feel like I’ve talked to them every day this week.  I called them on Wednesday, all upset that my incision was leaking again, but I think it was just because my drain was clogged.  My boob stopped crying tears of serous fluid from the incision by Thursday morning.

        “Hi Mrs Hawthorne!  Our last appointment of the day is 4:30 PM on Monday, would that work?”

        “Yes please!”  I honestly don’t know if I’ll be able to make it across town by 4:30, but I sure as heck am going to try!

        When the Infectious Diseases nurse called me back to say she got me scheduled for Saturday morning, I told her I was able to push my surgeon appointment back an hour, which hopefully will be enough time to keep the 2:30 (I learned later it’s actually at 2:15, buying me even a little more time).

        “How long will the appointment be?” I asked.

        “Let’s see…” and she started counting off under her breath, “45…it shouldn’t be longer than an hour.”

An hour?  I thought she was going to say 15 minutes.  How long does an IV take?  But that puts me at just over an hour to get to my surgeon’s office.  And I’ll be about 15 minutes closer to his office coming from the hospital than I would coming from my house.

        “Okay.  That should give me enough time.  You know, I just show up when you guys tell me to show up.  You tell me where to go and I go.  I’ve done all the things.  I had my first mammogram when I was 39 because I had a weird sore-looking-thing on my left breast.  And I don’t think it had anything to do with my cancer–I think it was God poking me in the boob telling me ‘Watch this!  Watch this right here!’ I’ve had normal mammograms for 5 years.  I had a normal one in September.  Then in February I found the lump.  When they removed it, it was the size of a baseball.  But there’s absolutely nothing I could’ve done differently.  I did all the things.”

        “Well, my best friend didn’t.  She had breast cancer 3 years ago, and it metastasized.  It’s all in her lungs now.  She has about 3 years to live.  They removed her breast and then told her to take the Tamoxifen.  She refused to,” the nurse said.

        “What? Why?! I was on the Tamoxifen for a few weeks before my mastectomy and there were no side effects.  I didn’t feel any different.”

        “She doesn’t trust doctors.  And now she’s dying.  And we’re only 55.”  Ugh.  I hate hearing that.  Here I am, doing EVERYTHING they tell me to do, and I keep running into obstacles.  I WANT to start chemo.  I WISH I could just take the Tamoxifen.  It’s just a friggin pill.  You just have to remember to take it every day, but that’s not too hard with a handy-dandy pill organizer.  That’s what I use to keep up with my meds.

        Saturday morning arrives and I start getting ready.  I still have a drain (my plastic testicle), so I have to shower in pieces.  I start out by washing my face in the sink.  Then I hook an over-the-door towel hook to the inside of the shower.  I take my bra off, with the drain safety-pinned to the bra, and I hang it from the hook.  I had ordered a detachable shower head prior to my mastectomy, so I am able to wash my lower half with that.  I use a washcloth under my arms, on my back, my stomach, and arms.  When I get out of the shower, I carry the hook with my bra and drain hanging from it over to the bathroom sink.  I use a baby wipe to “rinse” under my left armpit, since I can’t spray water under there, and I’m not confident that I’m able to rinse it with a wet washcloth (I can’t have it drip onto where my drain is Tegadermed to my body, so it’s difficult making sure there’s no soap residue under there).  I then get dressed, but I don’t put my socks on yet.  I still need to wash my hair.

        I had also ordered a shower chair prior to my mastectomy, so when I go to wash my hair, I fold up a full size towel for the seat of the chair, and I drape a hand towel over the back of the chair.  I then kneel on the seat of the chair, hang my head over the back of the chair, and using the detachable shower head I’m able to shampoo and condition my hair.  This is how I have to clean myself.  In stages.

        I get to the hospital, and I realize I have no idea where I’m going.  It’s the same hospital that 3 out of 4 of my surgeries have been at, but I’ve never been here on the weekend and I have no clue where the infusion center is, so I call from the Green parking lot.  The lady told me I could go through the same entrance, even though there’s a huge sign that says “This entrance is closed.  Please enter through the Blue parking lot.”  Thankfully the doors open, and I’m able to get to the elevators.  Then it’s two left turns.

        The infusion center is busy and backed up.  There are only 6 chairs in the waiting room, and, with me, they are all full.  I sit down and reach in my bag for my book.  Ugh.  It’s not in there.  I text Chris, “Did I leave my book?” to which he promptly responds, “Yes” with a laughing emoji.  I had made such a big deal about bringing my book.  And then left it.  This is the story of my life.

        I’m in the waiting room for almost an hour.  But I really don’t care.  All I care about is getting this thing started.

        My nurse is Amanda.  She’s really sweet.  “You said this is your first time?  Do you know how this works?”

        In my mind, I imagined I’d be sitting in a chair, they’d hook my port up to an IV, and I’d sit there for 30 minutes getting infused with antibiotics.  Wrong.  Yes, they hook my port up to an IV, but then that tubing connected to a bag of antibiotics, is controlled by an electronic pump.  Every 12 hours, the pump gives me a large dose, and all the hours in between it gives me a tiny dose, so the line never goes dry.  I have to carry around this polyester purse full of an antibiotic Capri Sun attached to a Game Boy for 24 hours a day.  For 14 days.  On a leash.  Attached to my chest. Plugged into this pump in a bag.  Wherever I go.  For 14 days.  And if you hold the pump in your hand, you might not think it’s that heavy, but when you have it hanging from your shoulder in the little black bag, that thing is heavy as hell!  And I could opt to turn the bag into a crossbody strap, but then it either rubs up against my port (which is all plugged in) or my missing breast (which is barely healed from last week’s surgery).  Oh, and the strap on the bag is scratchy and cheap.  No padding.  No felting.  Just uncomfortableness atop of uncomfortableness.

        When the other nurse (not Amanda) first accessed my port, she couldn’t get blood flow.  She was able to flush it with saline, but they need a blood draw, and it wasn’t cooperating.  She had me pump my right fist.  Then pump my right fist, turn my head to the right and cough.  Then lift my feet.  Then lean back and “tomahawk” chop my right arm.  And then cough.  Then chop and cough again.  Then Not-Amanda turned to Amanda, “It’s in the right place. I don’t know why it’s not cooperating.”

        “I’ve learned that I like to do things the hard way,” I assured her.  The classic ‘it’s not you, it’s me’ response.

        When Amanda tried, she got it right away.  Thank goodness.

        They got me all hooked up, taped up, and then watched me to make sure I didn’t flare up. There were no signs of allergic reactions, so I was safe to go home.

        Amanda had to write the date on my bio-patch (which is like Tegaderm–it’s the plastic covering they put over my accessed port) so they’d know when to change it.  I couldn’t help feeling like I was at a rock concert having the lead singer sign my boobs.

        When I got home, I decided I was going to take my bra off.  I’ve been in a bra for two and half months (with the tissue expander and then the implant, they wanted me to live in a bra–including sleeping–to support the reconstructed breast, but now that there’s nothing there to support, other than the safety-pinned drain, I can go braless).  I’ve never liked wearing a bra–who does–but I never slept in one until this summer.  Shoot, I never slept on my back until this summer.  I’m not going to know how to sleep when this is all said and done!

        Anyway, I took off my bra and looked at myself in the mirror.  One chewed up, shriveled up, stitched up, sunken in boob.  The other boob with a huge circle sticker over the top of it–clear in the middle and white outline covering over my plugged in port, attached to a 1980’s looking remote control.  Or a 1984 cell phone.  I was inspecting my shriveled up boob and turned to Chris.  “Does this look normal?” meaning the weird ridges.  He busted out laughing. “Nothing about this looks normal!”  We were laughing so hard, I almost cried.  “You’re right.  Nothing about this is normal!”