Tag Archives: cancer

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.


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”.


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.




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.


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.


post-surgery day 12 update

Just a short update, mostly so I can remember what was going on at this point in recovery.

Feeling good.  Lots of weird tingly, pins-and-needles sensations in the chest and underarm area–very similar to back a million years ago when I was nursing Scout, feels like when milk lets down.  Kinda cool.  I hadn’t felt that in like 17 years or whatever and never thought I’d feel it again.

The odd thing is on my right arm, side that had the lymph node biopsy, I’ve got some pain and stiffness in the inside-elbow area.  It feels like I had a bunch of blood drawn there yesterday, by someone who had a hard time finding a vein.  But there is no bruising, no needle mark from surgery or otherwise.  I first noticed it a few days after surgery and it has persisted for at least a week.  I’m sure it has something to do with nerves being fucked with during surgery and it’s normal and all that.  But tomorrow, unless Norton Pavilion is having a bomb scare or something, I’m going in to have the last drain removed (PRAISE JEEBUS) and I’ll mention to whichever nurse is doing it that I’ve got weird inner arm soreness.

I should be able to start physical therapy exercises on Wednesday, and I hope that will return more strength and range of motion to my arms, especially the right.  I can’t raise my right arm higher than shoulder height, which I discovered today at Kroger parking lot while trying to shut my trunk.  Thankfully the left arm is picking up the slack, cause it was not happening on the right side.

So physically good.  A week ago I was still unable to even straighten my back all the way because my chest was so tight.  Much improvement.

Mentally, I think I’m good.  But every once in a while, I take a step back go “woah what the fuck just happened”.  It was only a month ago I was told I have cancer, 4 May.  I made the decision to take aggressive surgical steps, one that felt like a no-brainer but I’m still a little tripped out that it happened at all.

I don’t feel like a cancer patient.  Maybe I need to spend more time looking at my chest.  LOL no mistaking me for a normal person.  Maybe meeting the medical oncologist (appointment is 12 June) and talking about treatment will make it more real.  I don’t know why taking hormone-blocking drugs would do that where cutting off my chest didn’t, but…who knows.  Maybe if recovery from surgery were slower, if I were feeling shittier, I would feel like someone who has cancer.  Because right now I just feel like a boob-less version of myself who can’t reach things, not someone who has a deadly disease, even if the prognosis is good.

Back to see the surgeon

So follow-up visit with the surgeon today!

No bad news (yet) and plenty of good news.

Good news–my cancer is early stage (1b); the three lymph nodes that were taken are all negative, meaning it definitely hasn’t spread; the left side also is negative.

(Possible) bad news–apparently my cancer is a little weird, so they are doing a few more tests, the results of which we will find out whenever I meet with the medical oncologist, possibly as far away as two weeks.  Treatment won’t be precisely determined until after these tests, so chemotherapy is not off the table yet, and I won’t know for a little while.

While I was hoping to learn everything today, I was fully prepared to find out that a lot was going to be up to the oncologist.  What I was terrified of was being told that it is way worse than they suspected, spread to the lymph nodes, and I would spend, not just the summer, but the entire rest of the year dealing with this.

Also in the good news column, I got the left drain out.  The right side is almost almost there, so, barring something odd happening over the weekend, I should certainly get it out on Monday.  Y’all getting these drains out will seriously improve my quality of life soooo much.  I haven’t been able to cuddle with the dogs, or really even get too close to them if they aren’t asleep, because of fear they would accidentally snag one of the tubes in a paw.  I haven’t been able to sleep on my side because of the drains.  Showering with the drains is an annoyance.  Recording the amounts three times a day is getting really old, not to mention the cool-science factor has worn off and now it’s just fucking gross.  If the tube gets bumped (so if I move), it shoots a rocket of pain up my side.  Can’t wait for this aspect to be over.

So I’m getting there.  One drain out, one to go.  Good news from pathology.  Surgeon happy with how everything is healing.  My range of motion is improving daily (I drove today for the first time since before surgery–put it off, not because of taking narcotics, but because I couldn’t really hold my arms out).  After Wednesday of next week, two-week mark, I shouldn’t have to limit myself nearly as much as I have to currently.  And now, knowing that my cancer is officially Stage Early removes a huge source of anxiety.