Author Archives: E M Peterson

Recovery Update

It’s been almost 14 weeks since surgery.

I think of myself as fully recovered–full range of motion in both arms; no more weird nerve perception, that feeling of reaching out for something that isn’t there anymore; no lymphedema, though my risk wasn’t huge, it wasn’t zero; no infection; no zombie effects of general anesthesia; itching gone.  I can lift all the things and do all the things I was lifting and doing before surgery, including sleeping however I damn well please.  Okay, as much as the dogs allow.  I can do yard work.  I even did a few weeks ago!  My backyard looked nice for four or five days!*  I can buy full gallons of milk.  I can go to Costco and not ask for help getting stuff in and out of the cart.  I can carry the vacuum and shave my pits and not constantly worry about doing “too much”.

*fuck you, weeds

I am used to the scars.  They are long and pink.  Smooth.  Graceful.  Not unattractive and though I’m not considering not getting tattooed, I will probably miss seeing the scars so prominently once I do.  I’ll wait until at least next spring before getting inked, so plenty of time for “enjoying” the vast expanse of blank skin, broken up by the two gentle, slightly curving lines that run from my sides to almost meet in the middle.

I am used to being flat.  Or getting used to it.  I haven’t tried on all my old outfits and experimented with placement of scarves and padding of bras, and I probably won’t.  I’m just not concerned with passing for someone who hasn’t had cancer.  It helps, I’m sure, that I was a card-carrying member of the IBTC before surgery and I don’t look drastically different with clothes on.  But it has been something to get used to.  I do occasionally pay mind to how much my scars are poking out of an arm hole (because it is summer and the hot-as-fuck Ohio River Valley, I wear a lot of tank tops).  Some days I care and change my shirt; some days the shits I give are non-existent.  Mostly I just love the ease of not needing a bra.  Chilling at home, all comfortable and unconfined, and need to run an errand?  Just leave!  Seriously!  You don’t have to put on a bra or grab a hoodie or whatever.  Just leave.  I asked Stuart if this is what it’s like to be a guy.  He confirmed.  I feel like I’ve gotten a peek at a secret cabal.  I can’t join, but I got a taste of illicit freedom.

Of course, I look very different without a shirt.  But I don’t hate it.  I’ve described my peace with the scars.  The scars are in place of real curves, 3D curves, with weight and warmth.  Those curves are gone and I miss them.  But they had cancer and I couldn’t keep them.  I am also very much at peace with my decision not to get reconstruction.  Okay, that’s not quite accurate.  I am super fucking happy with my decision not to get reconstruction.  It was absolutely the right decision for me and I know that every day.  Reconstructed boobs would not be my boobs, the boobs I miss, and right now I would be getting tissue expanders filled MORE PROCEDURES or getting ready for exchange surgery ANOTHER SURGERY instead of training to run a half marathon in October (much more on this whole running thing saved for a future post).

The oddest thing is less the visual sparseness and more how I feel, both what my hands experience when I touch my chest and the sensations there.  My chest is obviously flat, but there is no cushion there at all.  At all.  Hard.  A layer of muscle on bone, under skin–like an elbow or a wrist–but a broad plain with ribs and sternum clearly articulated, instead of a sharp point or a small, fine-boned area.  Though the numbness is subsiding, it is still the majority sensation.  It’s like novocaine wearing off after dental work.  Not horrible, but not necessarily pleasant.  It makes me wonder what it will be like in 6-9 months and how it will feel to get tattooed there.

I press my fingers and palms along these scars and the surrounding skin a lot.  Both to gauge my degree of acceptance of this flatness and to familiarize myself.  Cancer is an evil monster and can come back, despite surgery, despite medicine, despite precautions.  Just as this past February, any changes I detect can mean the difference between a treatment that is simple (even if it’s drastic as fuck) and one that requires weeks of radiology and chemotherapy and all the hardship that accompanies them.

I’ve also been on tamoxifen for 7 weeks.  So far, so good.  At least, I think so.  It’s honestly hard to tell.  The main reported side effect is hot flashes.  I didn’t have hot flashes before starting tamoxifen and I still don’t think I’m experiencing any.  I may be getting extra hot at night–I definitely get hot and throw the covers off, then get cold again–but I suspect it is sharing the space with two warm canine bed hogs during a summer heat wave.  I’m also a bit restless at night (trouble sleeping is something people report) but I have been off and on for years.  Some people say they have low energy because of tamoxifen; I often get sleepy mid-afternoon, just as I have for my whole adult life.  Probably has more to do with the amount and type of carbs I consume at lunch time.

Weight gain is another complaint, as is joint stiffness.  Lots of women report that exercise helps the stiffness, and so to combat that and any weight gain that may be lurking in my future, I decided to start running seriously.  But that’s a post for another time.

 

 

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I wish writing were as easy as not writing

Warning:  This post contains multiple, egregious run-on sentences and stylized abuse of conjunctions.

Ugh.  So it’s been almost a week since I’ve updated, and I’m like “oh I have something to write about!” and then I’m like “oh shit I’ve got loads to write about” immediately followed by “I have no desire to do this thing”.

Ugh.

I went with a friend to Gatlinburg, TN over the weekend.  We left Saturday early afternoon and returned today (Monday) mid-afternoon.  Less than 48 hours.  She went because her daughter had a dance competition there and I went because she wanted some adult companionship and I enjoy her company.  We did a similar thing last year, just in Myrtle Beach and for a longer stretch of time.

It was my first time in the Smokies other than driving through.

Fucking gorgeous.

Stuart and I lived near mountains when we were residents of Seattle a million years ago and we ventured occasionally into the Cascades and we could see the Olympics fairly often.  I had forgotten how primal mountain ranges are…how they overwhelm when you are in the middle of them.  When you live in a city and your house is like around 100-120 years old and that’s pretty old for most of the stuff around because everything else is a road that was repaved two years ago (already is buckled and cracked) and a shiny sign (replaced to look more trendy) and freshly planted sod and then you drive through a mountain range and your ears are poppin’ and you look around and everything is ancient, more old than you can really wrap your head around, your life is put into a humbling kind of perspective.

I’ve already lived through the head scratching, chin stroking “life is everything/life is nothing” thought experiment/existential despair that happens when one eats acid or survives an accident/illness or gives birth etc.  Most of us who lived past 30 have gone through some version.  Being in the mountains though is stop-you-in-your-tracks level of “you, in all your amazing human potential, are but a dot compared to what these hills have lived through”.

Could be on account of growing up in Wisconsin.  The Dairy State has some excellent rock formations because of the Ice Age (not the movie) dumping a bunch of terminal moraines all over the state, but for the most part it’s kinda flat.*  Whatever the reason, mountains impress me, and the Smokies are amazing.

*not like Illinois flat

Gatlinburg is the Tennessee version of Wisconsin Dells.  If you don’t know what that means, educate yourself (*ahem* count yourself lucky).  It is a mix of kitsch and cheese (figurative for Gatlinburg, literal for the Dells) and trash and fun and the best of the local surroundings.  It is a tourist trap surrounded by cloud-shrouded hills and towering trees and breath-stealing beauty.  It’s America, all its contradictions and weirdness and loveliness.

So I’m home from Gatlinburg and unpacked and back into the heat and humidity (hottest heat index in the entire country!).  Reunited with the dogs and Spouse and Spawn.  And realizing that I should have started this two hours ago.  Posts about cancer** and books*** will have to wait.

**started tamoxifen today

***facebook book meme

I wish writing were easier than just not fucking writing.  Not fucking writing is so easy.  Not fucking writing is my default.

I need to change that.  Hopefully that will happen because I have been doing so much interesting relevant stuff and not because I’m dying of T side effects.

I am, forever, a work in progress.

Good news from the oncologist

Appointment with my oncologist today and I finally got my oncotype score.  This is a test done to figure out what a woman’s risk of recurrence is and to determine whether or not she will benefit from chemotherapy.

Good news for me!  My score, 11, is really low.  That means not only no chemotherapy, but more importantly it means that the likelihood of me staying disease-free after five years is basically as good as anybody else.

I have to take tamoxifen, a hormone blocker, for 5-10 years.  I am hoping that I am not one of the women who get hideous, life-altering side effects.  This is a life-saving drug; also I don’t want to have to take a bunch of meds on top of this in order to tolerate it.  But for now, I’m happy that my prognosis is good, and I will take things as they come.

In addition to this news, my recovery is going great.  No pain, range of motion getting better daily.  I can lie on my side for longer periods of time, which is making sleeping easier.  I’m getting used to the scars and flatness.

Four weeks after surgery

I hit the four-week mark today, so I guess I should write something.

After the first two weeks of near-daily noticeable progress, the most recent two weeks has been more of a plateau, one that has at times been rather frustrating.

I started physical therapy exercises, designed to restore strength and flexibility after this type of surgery.  It took awhile to find the sweet spot of doing them, yet not ending up hurting.  It was kinda rough for a week and a half!  I was in more pain any time since the first two days after surgery.  I feel like I finally turned a corner now though.  The middle of my chest and sides/underarms feel almost neutral, which is a huge improvement just since the past couple days, when I had frequent sharp, burning pain in those areas.

It’s just been weird, feeling like I’m kind of floating along on my own with all this, not really knowing what is on the spectrum of normal and what is cause for concern.  I called the surgeon’s office once, hoping to get some guidance about the PT stuff and just generally how much pain is typical, fully acknowledging that everyone is different etc.  I was transferred to a Nurse Navigator, an expert in all things breast cancer.  It was not a good phone call.  Not helpful in the slightest.

I decided that talking to other women would probably be best, so I went to a breast cancer support group yesterday.  It was pretty awesome.  Lots of veteran survivors, a couple Nurse Navigators, and another woman who is just slightly further along in recover than me (her surgery was in April and she has already started tamoxifen).  And I realized that the reason that there has been so little follow up from the surgeon is that typically at this point, a woman is under the care of the plastic surgeon, not the surgical oncologist.  This doesn’t apply to me.  So I decided that I would call the breast surgeon’s office back and explain that I didn’t have another surgeon to release me to lift more weight and go swimming and that type of stuff.  But then today, I felt really good, best in days (weeks!) so we’ll see.  I guess I should at least call and ask at what point I can carry a vacuum around the house and can start buying full gallons of milk instead of the less-heavy half gallons.

My range of motion is definitely getting better!  I can wash my hair without having to hang my head down.  I went today to a u-pick farm and picked ten pounds of blueberries, with lots of reaching and up-and-down motions.  Somewhat concerned that I would be back in Pain City this afternoon, but I feel okay.  And this is after getting up at 5am with Stuart to get the dogs some exercise before the sun came up.*  We did a two-and-a-half mile brisk walk, probably longest and briskest in four weeks.  It felt good (other than being fucking hot) and I think I’m probably ready to resume my daily morning 5-6 miler.  I probably will start solo and work up to bringing the dogs with me.  As I believe I’ve mentioned before, Kira is a puller.**  I think I’ll be able to handle her after not too long.  What we really should do is spend serious time training her not to pull.  Ugh.  That is a topic for a much longer post though.

*Y’all it’s so fucking hot hot-as-balls-hot 80-degrees-at-7am-hot

**She, at 35ish pounds, pulls harder than either of my untrained, 150-lb Irish Wolfhounds ever did

So pain easing, range of motion improving, energy level good.  The surgical glue that covers my wounds is finally starting to peel off.  Unfortunately I’m one of THOSE people who like to pick at and fuss with things like that.  AND IT IS SO ITCHY.  I read somewhere online that you can smear neosporin on the surgical glue to encourage it to come off.  I might do that; then I can put some cortizone-10 on there and hopefully get some relief from this crazy itching.

 

 

 

post of whining

If May was the month of sadness and fear and surgery, June so far is the month of annoyance.

The first two weeks after surgery consisted of daily doses of progress and the accompanying good mood and hopefulness.  The past week or so is more one of stasis.

Not that stasis is bad.  I’d rather mostly stay the same than get worse.  The drains were an extreme pain-in-the-ass, and with their removal I don’t really have a concrete, this-can-happen-any-day-now goal post.  I actually had measurements and a chart that gave me a definite numerical thing to work toward for the first almost two weeks.  Now I just have an amorphous “recovered” to look forward to, and I don’t know when I can expect that to happen.

I’m getting better, able to reach more, farther.  But I’m still careful not to lift much.  I’m dependent on Stuart carrying the full laundry baskets and the vacuum up and down the steps, still asking him to dig the stand mixer and the Cuisinart out from the pantry and set on the counter before he leaves for work.  I still can’t walk Kira, the pullingest dog I’ve ever met, much less owned.  I still can’t lie on my side.

I still can’t do any yard work.  I’m pretty sure the act of pulling weeds or hoeing would result in pain like I haven’t felt yet.  Digging holes, not happening.  Trimming the wisteria, giant nope.  We’ve had a fair amount of rain recently and the growing things are bordering on out-of-control.  I am an inconsistent gardener at best, so this is not without precedent, but usually by now I’ve started to get my act together and minimally tidied up a flower bed or two.  I’ve had a few friends offer to come and help me with some of this, but I know because of the rain, they must have their own yards and beds and gardens to deal with.  I think I may just hire someone.

I know that this is all temporary and will get better.

I can be patient about regaining strength and mobility–it will come and the yard and the house and everything else will still be here.  But what I’m most constantly annoyed by, like a persistent mosquito-buzz in the ear, are the sensations happening on my torso.

It isn’t always painful.  I’m not miserable all the live-long day, though in the morning, when I first get out of bed, the center of my chest could probably accurately be described as a five on the pain scale.  I still get sharp twinges that last a second or two, no big deal.  What is driving me nuts is the tightness across my chest and especially in my right armpit.

It’s kind of an itchy burning.  Not painful, but definitely uncomfortable.  Here is what it feels like:

Imagine, if you will, someone takes a long piece of scotch tape and stretches it across your underarm.  If you are a person who doesn’t shave your armpits, pretend, for the sake of this comparison that you are in fact an armpit-shaver.  So you and your bare underarm are just hanging and some evil prankster comes up and somehow gets you to lift your arm and before you can react, they stretch a long piece of scotch tape up under there and pull it tight and tell you that if you take it off, a puppy will die.  So that’s what it feels like.  Pull-y and itchy and uncomfortable and super NOT RIGHT.  And if you move certain ways you feel like if you could crawl out of your skin, you would in a hot second.

Also irritating, though not quite to the above degree, are the places where the drains came out.  I have two bumps, one on each side of my ribcage, where the tubes exited my body.  I can still feel a long, raised ridge where the tube went up under my skin to the chest area.  The skin all around that is dry and intensely itchy from the wound dressing that was there for the first week (I wonder if  I’m sensitive to the adhesive, cause my skin went crazy train when the dressing came off).  Lotion helps but only for the first little while after application.  I tried going for a short run recently, but the whole area where the drains were was immediately sore, which I took as my body telling me to sit the fuck down.

On top of everything I have a canker sore on the side of my tongue.

So yeah.  I want to be back to normal.  I want to be productive again, but more than that, I just don’t want to be continually uncomfortable.

Okay!  Enough whining.  Time to go get some body lotion.

2 weeks post surgery

It’s been two weeks, and at this point, I start the physical therapy exercises “detailed” on the sheets I was given before surgery.

So of course I totally overdid it and now I’m in more pain than I’ve felt in many days.

This is absolutely par for the course for me and I am not handwaving my role in my setback.

But damn, better PT instructions could probably* have prevented my shit day.

*see above disclaimer

So I have two stapled-together sets of paper.  One has five color-illustrated exercises.  The other is like eight black-and-white pictures, some similar to the five, but generally more comprehensive looking.  The five exercises don’t have much info about how long to hold the stretch and how many repetitions to do.  The eight say to hold a few seconds and do six reps.  Because I am eager (and admittedly probably carrying unrealistic expectations) to get on with my fucking life (these exercises will restore my range of motion) and I don’t want to be a non-compliant patient, I did them all, holding for 10-15 seconds, doing all six reps for all of them.

I know now NOW that this was too much for the first day.

But in my defense, I WASN’T TOLD NOT TO.

Nowhere on the sheets does it say to start with just the simple, color-illustrated exercises, only doing a couple reps, and work up to more and onto the challenging, black-and-white exercises.  Nowhere does it say, YO DUMBASS! BABY STEPS! YOU JUST GOT YOUR CHEST CUT OFF A FORTNIGHT AGO

Also, in my defense, when the nurse went over the sheets with me, it was right before surgery (literally–the anesthesiologist’s assistant came in with the “you will give no shits after this” medication two minutes later) and I had a couple other things on my mind, like not waking up and never seeing husband and child again (and not seeing how The Avengers *ahem stucky* turns out and not witnessing my beloved Packers return to the Super Bowl and not seeing my country fix this current bullshit).  So I may have missed when she said “oh btw you’ll want to ease into these exercises”.  I checked with Stuart and he doesn’t remember anything like that either, though he was also a tad distracted, not with the perfection of Steven and Bucky of course (he thinks shippers are crazy) but with the health and safety of his spouse.

So anyway, I started physical therapy exercises this morning with the best of intentions and I ended up feeling like my right armpit was on fire and my sternum had cracked and I was never going to heal because I was too stupid to squeeze a pink ball and lift a broom without hurting myself.

Obviously part of the problem was I let my imagination run away from me.  I had felt so good lately that a bit of pain and soreness had me unable to cope without immediately jumping to I AM SO. FUCKED.

Anxiety has a friend named Catastrophize and when Anxiety can’t pay a visit, Catastrophize shows up instead.  I can usually recognize Catastrophize before they make it through the door and tell them to buzz off “I am an Optimist!  Not a Pessimist!  Get Thee gone, foul creature!” but sometimes they sneak in.  I had some insomnia last night and also woke up stupidearly this morning, so tiredness played a part, as did the new pain level.

Anyway, I spent a bunch of the day convinced I had irreparably harmed my body.  Thank goddess in addition to catastrophizing, I’m also good at rationalizing things (there’s no way you totally fucked yourself foreverandeveramen by doing ten minutes of physical therapy; you’re just being a drama llama) and distraction (several episodes of the latest season of iZombie and knitting like a fiend).

I’m feeling way better now, like almost normal (last night’s level of normal, not last month’s level of normal).  The fire in my right pit is out and my sternum should be okaycool after a good night’s sleep.

This was a needed wake-up call for me.  A Cancer Bitch-Slap, if you will.  Progress is primarily made in tiny steps and cannot be rushed.  A bit of pain is not the end of the world.  Real healing will take more time than I want it to.  Patience and perspective are the keys to survival and sanity.

And tomorrow is a brand new day.

drain-oh

Yay, drain free!

So now I can shower like a normal person.  Before I had to put the drains in a fanny pack and take care not to snag a tube when washing.  The fanny pack would fill up with water and would drip, so when I stepped out of the shower, I had to quick get to a sink to set the pack in.  Then put on a shirt so I could have something to attach the drains to, then towel off my legs and get dressed the rest of the way (leaving the drains in the sink pulled on the tubes and hurt).  A stupid, clumsy process.  I can use body lotion again!

I can leave the house and walk around without worrying about the drains pinned to the inside of my shirt.  Okay, the drains didn’t actually stop me from leaving the house and I wasn’t worried about a damn thing…but it will still be nice to go out and about sans plastic bulbs hanging there, getting in the way and causing pain.  I can go for a brisk walk and not fret about getting sweaty.

I can sit or lie without constant tiny twangs of discomfort, no reminders that I had actual tubes coming out of my body and that my torso resembled The Borg.  I can get closer to the dogs.  They still need to not maul me, but now I won’t have to be so vigilant that they could accidentally get caught on a tube, sending me straight to urgent care.

I can give and receive full-body hugs again.

In short, I have been waiting for this day and it is here.