I Suppose I Should Write About My Stupid Thumb

Hmm it’s been awhile.

What started as a cancer blog, quickly evolved into a running diary, and even more quickly died a quiet death once the race I was training for was over.

For several months I didn’t have any cancer news to share.  I see my oncologist every three or four months to make sure everything is still good.  When you’re NED (no evidence of disease), no news is the best news.

My running slowed to a crawl over most of the winter months, but I picked it up around February to start training for the Filly Women’s Half Marathon at the beginning of April and the Kentucky Derby Festival Half Marathon at the end of April.  Currently training for the Indy Women’s Half toward the end of September and the Urban Bourbon Half Marathon in October.

I started sewing more and hope to post lots of pictures of Finished Objects and Works in Progress.

The point of this post though is to finally talk about my stupid thumb.

I’ve been putting this off, hoping it would just get better and I could forget that I ever had issues, but it is apparent that my stupid thumb is my new-new normal and I should accept that.  Now I wish I had started posting back in April, back before it was a thumb problem and was only mild tightness in my forearm.  I wish I had been tracking and recording my progress, because now I have to rely on my shit memory to tell if it’s getting better or worse.  Anyone who has seen me recently and asked “how’s your summer?” has heard the whole story.

So it started the day after the Filly Women’s Half.  I was pulling weeds in the front yard when I noticed a little tightness in my right forearm and inner elbow area that hadn’t been there before.  Odd and random.  I recognized it as similar to the soreness I felt while recovering from the double mastectomy, though that was higher on the inside of my arm.  It had been more than 10 months since my surgery.  Almost 9 months that I considered myself pretty well healed up–little chest tightness, full range of motion, phantom pain calming down, scars shrinking and fading and becoming less itchy.  I totally thought I was done with having to worry about anything other than getting cancer again. 

A quick word about cording or lymphatic cording, also known as Axillary Web Syndrome.  It is a sometimes side effect of sentinel node biopsy or axillary node dissection.  Damage to the lymph system can cause scarring or hardening of the lymph and blood vessels, creating stiff cords just below the skin that are most commonly in the armpit but can travel down the arm too.  It’s not well understood, which is a little infuriating.  Breast cancer is not an uncommon disease, lymph node removal is the norm for breast cancer surgery, and studies suggest cording happens in up to 72% of patients who have had node dissection.

I had mild cording in the weeks after surgery, but the stretching I did as part of my recovery took care of it easily.  So I did the stretching I did back in June.  It didn’t go away, and maybe got a little worse, but not appreciably worse.  I had a one-year follow-up appointment with my breast surgeon’s office scheduled for the end of May already, so I figured I would just keep stretching and if it was still a thing, I would bring it up at that appointment.

I ran a 5 mile trail race on Mother’s Day, and afterwards, while I was taking a shower, I noticed that my thumb had gotten badly swollen and I couldn’t really reach the shower head well.  The tightness in my forearm was now painful, extending up to the under arm, and inhibiting my range of motion.  Great.  The trail race was muddy and slippery, but I hadn’t fallen.  WTF

The next day I called the hospital cancer help line wondering if they could hook me up with a physical therapist to get this under control.  The person I spoke with was spectacularly unhelpful, and I got off the phone frustrated and feeling like I just needed to deal until the end of the month.  The thumb swelling was worrying me though because of lymphedema.

A word about lymphedema.  It’s not the same as cording, though they may be related (again, lots more research needs to be done on cording).  It is swelling, happening in the hand, arm, and/or torso of a breast cancer patient, caused by lymph fluid build-up from surgical node removal.  It can get worse if not treated and cause permanent tissue damage.  Not cool.

Stuart and I were going to be flying to Las Vegas for Memorial Day Weekend, before my scheduled appointment, and my stupid swollen thumb was concerning.  Flying can make swelling worse, and I had always heard that women with lymphedema should wear compression sleeves on airplanes for that reason.  So I called the breast surgeon’s office directly and got a referral to the physical therapist who treats the lymphedema patients.

This whole thing was not a fun time for me.  I had spent 9 months feeling like a normal person.  It was what I wanted, and why I chose the surgery I did, a double mastectomy with no reconstruction.  I wanted to get back to living life with a minimum of doctor visits and procedures.  I wanted to carry on with my new normal.  Flat chest, daily dose of tamoxifen, but cancer-free, training for a half marathon, optimistic.  Now I felt like a cancer patient again.  I only had two or three nodes out, I was not overweight, I had not had radiation, I was NED, I had not had an injury, I had not had an infection.  And yet.

I felt like my body was betraying me again.

My physical therapist was awesome.  First she measured both my arms.  She was curious to see that my left arm was bigger than my right (I am right handed and it is my right arm that was the problem arm).  My explanation was I hold my dogs’ leashes in my left hand and they are extreme pullers, so every dog walk is like a one-hour session of resistance training for that arm.  Anyway.  The swelling, apart from the wrist and thumb, wasn’t awful.  The pain and tightness though was pretty bad.  I couldn’t really raise my arm above my shoulder.  She stretched my arm out, which hurt but in a good-hurt way, and did lymphatic drainage massage.  She also ordered me a compression sleeve and compression gauntlet (think fingerless glove) for the flights.   She told me that she wasn’t sure I had lymphedema, that the swelling may be related to the cording, but she was going to treat me as if I did have lymphedema.

I asked her why.  Why after 10 months did this happen?  Nothing seemed to have caused it.  The first symptoms showed up after a race and it got worse after a different race, but it’s not like I ran those two things in a vacuum.  I had run another half marathon in between without incidence.  And I had almost-as-long training runs in between as well.  There was no trauma.  Nothing new.  Why was I problem free for almost a year and within a month of the first tightness sensation I couldn’t reach a coffee cup on a shelf?  Her answer:  “Human bodies are weird.”  Okay, cool.  If I need to simply accept and be zen about this, I can handle.  A concrete explanation would have been nice, a behavior cause that I should avoid repeating, but I’ve long since learned that sometimes shit just happens.

After that one appointment and a day or two of doing the at-home stretches she gave me, the cording in my arm had resolved and I had full range of motion back.  Yay!  Unfortunately the cording was now in my wrist and into my hand and my stupid thumb was still swollen.  So that was my summer–twice weekly PT appointments for two and a half months, trying to get rid of the last cording and hopefully the swelling.  My PT taught me how to do lymphatic drainage massage on myself, experiment with hand stretches.  She taught me how to use Kinesio tape to help the swelling.  We even tried laser treatments.

My PT was stumped.  She had never seen cording go into the hand and up someone’s thumb before.  Why, after almost 50 years of not deviating from the norm (except for that cancer thing), was I suddenly a medical oddity?  Who the fucks knows.  The rotten thing is the way cording is treated is stretching and this weird manipulation-massage, but it’s really hard to stretch just your thumb and it’s really hard to pinch enough on your thumb to hit the cord there.  She consulted with her colleagues and none of them had any suggestions for treatment that she wasn’t already doing.  At the end of July she discharged me, saying to call her if I got worse.  I should wear my gauntlet when doing repetitive and/or stressful activities using my hand (like yard work and exercise), avoid lymphedema triggers, keep stretching and doing lymphatic drainage massage.

So now here I am.  The swelling and tightness in my arm is totally gone.  I have full range of motion in my arm, but my wrist is kinda weak.  There is one tiny spot of tightness at the base of my thumb on the back of my hand.  My thumb is still swollen.  I think it is less swollen than it was a few weeks ago, but I *stupidly* haven’t been documenting it, so I’m not even sure.  The fingers on that hand seem fine.  My thumb definitely looks worse at the end of the day, I think.  Who the fuck knows.  Some days are worse than others, and I’m eager to see what improvement comes with fall and cooler temperatures and lower humidity.

I have come to accept that I’ve got mild lymphedema and I need to be watchful.  Of what, I’m not 100%.  I know that I should avoid blood pressure cuffs and injections and blood draws on that arm.  I know that I should avoid tight sleeves and bracelets.  Keep the skin in good condition, avoid extreme temperatures of water, avoid extreme heat in general, no manicures, no cat scratches, no trauma, drink lots of water, avoid fatty foods, avoid sugar, avoid dairy, avoid salty food, avoid spicy food, avoid caffeine, avoid alcohol, avoid MSG, whatever you do don’t gain weight, avoid sun exposure, wear compression garments when flying and on long car rides, avoid being sedentary, avoid overuse, don’t wear a purse on that arm, don’t carry heavy stuff for any length of time, don’t wear a back pack, don’t cut yourself, don’t burn yourself. 

A bunch of things are no big deal, things I’m already doing.  A bunch of things I’m not particularly worried about at this point because my swelling is mild.  But.  Before it was mild, it wasn’t there, so I know that things can just change.  For no reason.  A bunch of these things are not exactly avoidable.  Accidents happen.  I’m not going to stop cooking because I might cut myself or burn myself.  I’m not going to get rid of the cats or stop doing my cat shelter volunteer work in order to bring my risk to zero.  I confess, I have used my thumb as an excuse to not do yard work (y’all it’s bad but honestly it’s been worse and the reason then was solely my avoidance and procrastination), but I’ll get out there and pull weeds…any day now.  Yeah.

So that brings me to the real fist shaking, life-is-so-unfair feelings connected with my stupid thumb.  The I-am-willing-to-ignore-medical-advice vanity that probably says a lot about me.   

I want a chest piece.

I want a chest piece and my PT said she would advise against a tattoo because of the lymphedema.

A chest piece was a huge reason I was so on board and cool with my decision to stay flat after surgery.  Getting on with my post-cancer-surgery life without a bunch of new surgeries and complication risks was absolutely the main reason I chose not to get reconstruction.  I never had wanted one before, but the idea of an awesome chest tattoo covering my scars was icing on the quicker-surer-recovery cake. 

I have in the past year become rather fond of my scars.  Like, I think they are badass and sexy.  They have ceased signifying mutilation and now are the mark of me as someone who healed. 

My feelings about my scars are as complicated as my feelings about my cancer.  For a while I felt a kind of survivor guilt.  I know I had cancer and got a big, life changing surgery…but no radiation, no chemo–the things that fuck up life for a lot of cancer patients, I got to skip.  I recognize how lucky I was to get my diagnosis at an early stage.  I was crazy fortunate to be able to get a mammogram the same day I saw my PCP about a lump and get a biopsy a few days later and surgery within a month.  I was crazy fortunate we had plenty of room on credit cards for the high insurance deductible.  I was crazy fortunate my pathology report was about as good as it could be.  But the scars on my chest are not simply the path of least resistance.  I gave up my curvy, still-perky chest to get rid of a disease that I didn’t choose, and I think that should count for something.  I was lucky to be diagnosed at an early stage.  That doesn’t make me less of a cancer survivor. 

So anyway.  Not hating the scars.  Kinda liking them. Not liking liking.  I don’t step out of the shower and look in the mirror and think “thank god I don’t have breasts anymore because the pre-teen flatness of this rib cage and these long, gently curving pink lines are a big improvement.”  No one would think that.  What I do think when looking in the mirror is “I fucking overcame a deadly disease to stand here on my own two feet after just having run ten miles and I am going to keep going and keep running and cancer didn’t kill me now and I’m going to do all I can to make sure cancer can fuck itself forever.” 

Getting a chest piece was part of this.  I no longer want to cover the scars with ink, to hide them, but maybe work with them, make them pretty.  And now I look at my stupid swollen thumb and get a little sad.  Then I wonder what’s the worst that can happen? 

Nothing right now.  I don’t have a design or really any concrete ideas.  But I sure as hell am not ruling it out.

Morning Run 23 October

First run post Urban Bourbon.  Distance:  5.4, Time:  55 minutes, Pace:  10:09

Sunday I felt okay.  Knees were screaming at me when I went up and down stairs, but fine other than that.  Definitely no running for me that day!  Monday I thought about running and ended up doing a two-mile dog walk, then a three-and-a-half mile dog walk.  Probably a good choice, though I think I could have handled running fine.  I just didn’t feel like changing clothes.  Yes, I can talk myself out of running with hardly any effort.

This morning I met a couple people from my women’s running facebook group.  We met at 8am at the Big Four Bridge, went over to Indiana, then down to the Falls of the Ohio and turned around.  A bit over 5 miles.  The weather was perfect.  When we began it was 45 degrees, with the sun starting to come up and very little wind.  5 miles in before 9am!

Piece of toast, one cup of coffee.  Capri length tights, tank, long sleeve tech shirt.  I was a bit warm by the time we got across the bridge, but we weren’t going that fast and we were in the shade a lot, so I was mostly comfortable enough.  Glad I left my jacket in the car though!  Blue shoes.  2min/30sec intervals.

So now that my running goal has been reached, I need to decide what the immediate and long-term future is for me.  There is a series of short races close to home in the winter months called the Polar Bear Grand Prix.  I’ll probably sign up for them.  Then the Triple Crown of Running (5K in February, 10K at the beginning of March, 10 miler at the end of March) I will definitely do.  Already signed up for the Kentucky Derby Festival Mini Marathon (end of April) and the Indy Women’s Half (in September).  I really like the half marathon distance.  There is a half on St. Patrick’s Day that I may consider doing too.  So I think I will continue to run three or four days a week, maybe two 4-6 miles and a longer 8-10 miles.  Something like that.  I want to keep running as long as I’m feeling good and if I always have a race to look forward to, I will keep it up.

Urban Bourbon Half Marathon

I finished!  That’s all I really wanted, but I kinda wanted to try for a sub 2:20.  My time was 2:12:02!  I kept my pace right around 10 the whole time, something I haven’t always been able to do.  I credit the cooler weather for not running out of steam.

Got up at 5:45, took care of the dogs, cup of coffee, carb loaded (English muffin and toast).  The weather was breezy and a little mist/drizzle, 52 degrees.  Capri tights, tank, and light jacket that I took off and tied around my waist a couple minutes before start time.  Black shoes.  Left a few minutes before 7 to get downtown while navigating traffic, utility work, and road closures in plenty of time.  All worked out well.

It was cold as fuck downtown with the wind, but once I got in the corral with all the other bodies, it was fine.  Then once the pistol went off, I was thankful for my light clothes within a couple blocks.

The course went towards Waterfront Park and looped around, then up one of those streets that connect downtown and Phoenix Hill, then down Lexington to Cherokee Park.  Yay home turf!  The course went around most of the loop, then out and down Cherokee to Grinstead, then toward Cave Hill, down Baxter, down one of those streets to the finish line, a block or so from where we started.  Lots of people cheering on the sidelines; Stuart went to watch with the dogs somewhere along the park road, but I think he got there right after I went by.

There was a post-race party right near the finish line, with bourbon tasting and pizza and burgoo (Kentucky stew).  I saw some old dance families, so we did some catching up and I had some friendly faces with whom to drink my bourbon.  Skipped the pizza and burgoo in favor of a bagel.

2 minute/30 second intervals.  I felt good for most of it.  A little twingy, but no big deal.  Around mile 10, the twinginess became something closer to pain and my right hip was pretty sore when I stopped running.  I stretched right away and that helped.  We took the dogs for a couple mile walk in the afternoon–slow and easy.  Right now, 10 hours later, I’m stiff and sore but not much worse than after my earlier long training runs.  I plan to take a nice epsom salt bath and get a good night sleep and anticipate feeling fine in the morning.

Thursday Morning Run 18 October

Last run before the half marathon on Saturday; I’ll probably go for a nice long dog walk tomorrow, maybe jog a few minutes with them, and stretch.

Distance:  4 miles, Time:  37:43, Pace:  9:26, Elevation Gain:  182

42 degrees at the start, didn’t check when I got home, but I imagine since I was only out for 40 minutes, not a whole lot changed beyond a degree.  It was sunny with a light breeze.  I wore long tights and long sleeve shirt with black jacket.  It seemed chilly when I let the dogs out; I should have just stuck with a tank and jacket.  I got quite warm after a mile.  Blue shoes (oops).

English muffin, one cup of coffee for breakfast.  Left at 9:45.  Good run!  I ran a little faster than I do for a longer run and it was fine.  Hard work going up hills though!  I took a new route, this time going into and out of a different park entrance and around the loop at Cherokee Park in the opposite direction as usual, the same direction as the race on Saturday.  I feel like the hills in that direction aren’t as bad.  I guess they are longer and not as steep.  Anything’s better than that damn hill at the golf course and luckily that fucker is not part of the race route.  Body felt good–no right leg twinges yay!  I listened to Eluveitie again, Slania, probably my favorite album of theirs.

2 minute run/30 second walk intervals.  I’m still not sure what I want to do on Saturday.  That or 90/30?  My goal is to finish and enjoy myself doing it.  No real goal on time, though sub 2:20 would be fabulous.

 

Tuesday Morning Run 16 October

Distance:  5 miles, Time:  49:38, Pace:  9:56, Elevation Gain:  119

Weather was decent—42 at the start, overcast, little wind, 45 at the end

Long tights, tank with black jacket were good choices.  Chilly when starting but got comfortable within a quarter mile.  Blue shoes.

One crumpet, one cup of coffee for breakfast.  Left at 9:30.  Not a bad run.  Normal huffy puffy at first and felt good at about one mile.  At about mile two, felt a tiny twinge on outside of right knee and a wee bit of twinge in right hip.  No big deal, though decided to do 5 miles instead of 6 because of it.  Didn’t get worse during run.  Could have kept going under other circumstances, namely no paranoia about right leg twinginess before half marathon on Saturday and general wanting to taper this week.

Down Bardstown Road and Baxter Ave past Feeders and looped around Main St by Home of the Innocents, then back up the way I came til Cherokee.  Only hill was way back on Baxter.  A lot of these sidewalks are in such sore shape, I could be trail running.  That and the traffic makes me love running in the park even more *shakes fist at hills*.  Listened to acoustic Eluveitie album.  I think I could listen to Brictom all day long.  Next run I will probably get back to their usual Death Folk Metal.

Eluveitie – Brictom from NORT85 on Vimeo.

Friday Morning Run 12 Oct

Last long run before taking it easy for Urban Bourbon Half, which is a week from tomorrow.

Distance:  11.5 miles, Time:  1:57:28, Pace:  10:13, Elevation Gain:  386

Good weather:  Sunny, no wind, 42 degrees when I started and 51 at the end

I left at 9am but had a wardrobe malfunction within a block, so I went right home and changed into pants that weren’t going to fall down.  I also realized I was overdressed, wearing long sleeves and a jacket, so I changed into just a tank under the jacket.  Good choice.  I would have been miserable, especially on the blocks where the sun was hitting me.  This was the first chilly morning I’ve run in at least a year, and there will be a learning curve on figuring out how to dress for longer distances.

Black shoes.  Two crumpets for breakfast; two cups of coffee.  I felt okay starting.  Huffy and puffy and not loving it, but by mile 3 I was in my happy spot and around mile 8 I was having a grand time.  Running in cooler weather is leaps and bounds better than hot weather.

Went toward downtown until the ballpark, then back around via Main St, up Baxter, down Grinstead into Cherokee Park, potty stop and water refill at mile 7, around the loop and out the way I came in, then down Cherokee Road and up and down Cherokee Parkway.  11 and a half miles! (I got a ride home the rest of the way from Stuart, who *happened* to driving by on his way home for lunch)  I was getting tired, but body wasn’t hurting.  I feel like I could have done another mile and a half without killing myself.  I would love to finish Urban Bourbon in 2:20 but really the goal is to simply finish.  I guess it depends on how hilly the course is and if I have to make a potty stop.  I will definitely not have two cups of coffee on race day.  Hills on this run:  up Baxter, hill by Cherokee golf course, up to Hogan’s Fountain, up Cherokee Parkway.  The whole second half was pretty hilly, but there were downs after the ups, so it all worked out.  I switched up the intervals and did 2 minute run/30 second walk.  It was fine, noticeably more difficult but not onerously.  I used the interval timer on the fitbit–really nice feature.  Just need to decide what to do for the race.

This Is A Running Post

This post has been a long-time coming.  A few weeks ago I even had one mostly written, but my computer crashed and I lost it all, which destroyed my desire to write another word for a good long while.

Back in mid-June, around three weeks recovery from surgery, I started running again.  At the risk of sounding Drama, it’s been a bit life-changing, hence this post.

For years, I’ve been a casual, on-again-off-again, I-hate-running runner.  Years ago, maybe five or seven, I went on a running bender that lasted several months.  I put a shelf over the arms of my treadmill, set my laptop there, and binge watched a bunch of tv.  It was winter and I was behind on a lot of shows, so I racked up miles and miles.  Then it got nice out and, not knowing better, I immediately switched to running outside full time.  It didn’t take long for me to develop an injury, first the tensor fascia latae and eventually iliotibial band issues.  So I’d take a week off, pain after a half mile run; take two weeks off, pain after a half mile run.  I could go for a seven-mile walk and feel awesome afterwards; running perhaps was not in my future.  Walking was more time consuming, but I liked not hurting.

Occasionally I tried running again, like last year when I completed Couch25K, but in general, though I seemed to be past the injury thing, I never enjoyed myself doing it.  Between normal seasonal heat and cold and rain and my own innate laziness, I never ran more than a couple weeks in a row.

This spring, I gave it another try.  Winter was cold and therefore rather sedentary, and though another Couch25K was not necessary, I figured I should start easy.  I began by running a minute, walking two minutes in repeated intervals.  Over several weeks, I increased the running in small increments, so eventually I was running two, walking one.  It wasn’t horrible!  And I took Camp.  He was a reluctant running buddy, but it was fun to have him with me.  In mid-April we got Kira, who could run five marathons a day.  He wants to do whatever she is doing, so the running thing looked like it might work out.  Yay, running with dogs!  We were working up to three-mile runs and it was going well.  Yay!  Then I got my diagnosis.

Long, introspective walks felt more therapeutic during those few weeks before surgery.  Recovery went well and by the second or third week of June, I decided to accompany Stuart on one of his morning runs.  He was getting up at 5:15 and trying to run with both dogs, which I knew from experience was challenging.  We only went a couple miles, but I felt great.  Motion is lotion, I’ve been told, and moving was a hell of a lot better than not, especially since I was still limited on how much I could lift and do with my arms.  After a few outings, I was ready for more.  I should probably mention that Stuart, a dedicated weight lifter, prefers his relationship with cardio to be a strictly 30 minute, three times per week arrangement.  He had no interest in going farther than his usual warm-up plus two-and-a-half miles.  Also I thought staying in bed cuddling with Camp sounded much nicer than hitting the pavement at stupid-early o’clock with him and High-Energy Dog.  So Stuart kept going out with Kira and I started running by myself after he left for work.  The dogs didn’t seem to mind staying behind, as long as they got a walk after I got home.

My oncologist told me that the number one thing I could do to prevent a cancer recurrence was to exercise.  Also, two common complaints of tamoxifen are weight gain and aching joints.  Exercise, along with magnesium supplements, is recommended to deal with joint pain.  Fortunately I haven’t noticed any major side effects, but apparently that can change at any time and I really don’t want to ever get cancer again.  So it seemed like a no-brainer to give running more than my usual past efforts.

Because of my history with injury and my desire to have the running thing actually stick this time, I decided to try the Galloway Run-Walk-Run plan, similar to the rhythm I was doing pre-diagnosis.  I started with 3 minute run, 1 minute walk intervals, going for three miles three or four times a week.  I was amazed at how good it made me feel.  The small, noticeable improvements, along with my returning range of motion, made me feel like I was reclaiming my body.  Taking back my wholeness after having my chest cut apart.  I was doing something for me and my health, something that gave me confidence and purpose and a feeling that my old-lady cancer-body was not done yet.

I was so into the running thing that after a month or so I started to flirt with the idea of a half marathon.  This was mid-July and the marathon that caught my eye was the Urban Bourbon Half Marathon, a local favorite on 20 October.  14 weeks to train, and most of the beginner half marathon training programs I looked at were a 12-week time frame.  I was already running (run-walk) three miles and digging it, why not?  I wanted to increase my distance and this gave me an end for my goal of “running more”.

So I bought a second pair of shoes, signed up for a 5K, joined a facebook group of women runners, and even started going to bed early on Friday nights to accommodate 6am Saturday long runs.  I went for a group run with those women runners and found other people doing intervals.  Around then I switched my ratio to 90 seconds run/30 seconds walk.  It was a good choice–I didn’t really need a full minute of walking any more but the heat was making three minutes feel like a lifetime.  I totally credit intervals with being able to run through the summer.  I’ve remained injury free and I don’t dread hitting the pavement, much different than my prior experience!

Also different is not having to wear a sports bra.  Running bra free is a revelation.  Like, I can’t really describe how liberating and wonderful it is.  I remember the first or second time I went out with Stuart and I was so amazed and I asked him if that’s what it’s like to be a guy.  Seriously.  Bras are a necessary evil.  The cute/sexy/fun ones are often barely functional.  Even the well designed ones kinda suck, and though one would think that bra-designers and bra-designing companies would have figured out how to fashion one that is at least moderately comfortable by now, that is not the case.   Not needing to wear a bra at all any more, but especially not needing to wear a sports bra, is the tiniest speck of a silver lining in this whole cancer-getting, breast-losing shit sundae.

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.

 

 

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.