(16-05-29) Evaluating My Progress

I keep telling myself and others that “the hard part is over.”  I truly believe this.  I know that i still have a long way to go: three more weeks of radiation, Herceptin injections until November, 1-2 more surgeries to replace my expanders with implants, an outpatient surgery to have my port removed, 5-10 years of taking hormone therapy pills, and ongoing follow-up appointments to constantly monitor if/when my cancer returns.  Even with all this still ahead of me, i feel like the mastectomy and the chemotherapy were the worst parts of my treatment.  These two things took the most out of me – physically, emotionally, socially, and professionally.  So now that i am done with both of these, i have this perception that i can resume living the way i used to.

This perception is misguided.

Cancer still has its grip on me.  I keep trying to deny that, and it keeps reminding me that i am wrong.  On Wednesday, for example, i hit my head.  I was at work, hovering over a dirty toilet and trying to push the pee out as quickly as possible because my thighs are not as strong as they used to be, but i didn’t want to sit down on that toilet seat.  My muscles started burning after only 10 seconds, and when i happened to look down to wipe, my vertigo kicked in, and i hit the top of my head on the wall in front of me.  Luckily, the room was small, and my left hand instinctively reached up to cushion the blow … but the hit still brought tears to my eyes, and i ended up sitting on that nasty toilet seat anyway just to wait for the room to stop spinning.  Another reminder came this weekend, when i found myself dealing with even more vertigo after drinking two nights in a row.  It wasn’t even that much (at least not for me): three ounces of whiskey over a 4-hour period on Friday, and one glass of wine on Saturday.  In my “normal” days, this amount would have done little more than warm up my tummy … but i found myself too dizzy and lightheaded all weekend to go to the gym, and i lost my balance this morning even trying to vacuum a recliner.

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And then there is the physical evidence that chemo drugs are still running their course.  I’ve noticed a number of changes, some of which i’ve already discussed in previous blogs, but the latest one is that my nails are all falling off.  They started bruising under my nail beds about three months ago and then painfully tearing last month.  I’ve covered this up with ongoing manicures, and it was only today that i got to see what they look like without nail polish.  It’s crazy to me that chemotherapy drugs i stopped taking a month and a half ago continue to wreak havoc on various areas of my body.

Part of my learning process throughout all of this is that i have to step back and be patient while i focus on this particular battle, while disregarding other things i need/want to do.  This is difficult for me.  I look at my atrophied arm and leg muscles, and i get mad at myself for not going to the gym more.  I look at how messy my house is, and i get frustrated that simple tasks like vacuuming, mopping, and cleaning the litter boxes get make me dizzy, nauseous, and tired.  I look at my back yard, and i get upset because there were a number of landscaping things i wanted to have done this year before it hit triple-digits, but i haven’t done much more than pick the weeds … and even that task isn’t finished.  I’m getting antsy.  My energy and strength has been compromised for six months now, and i’m over it.

 

(16-05-26) Random Thoughts

Even though Mercury ended its retrograde period on Sunday, I have found myself consumed all week with thoughts about Tarah-In-the-Past.  Maybe it’s because cancer has me focusing more these days on my own mortality.  Maybe it’s because there are certain things i’m supposed to have learned by this point in my life, but i haven’t gotten there yet.  Maybe it’s because Mercury-in-retrograde continues to live up to its reputation of reintroducing people from my past and mind-fucking me in small but continual doses.  Whatever it is, my cognitive state is in overdrive.  I haven’t been sleeping this week … which i know is “normal” for me, but it’s a red flag when it takes me three sleeping pills and 4.5 hours to fall asleep, and then even that sleep-deprived exhaustion the next day doesn’t allow me to seek refuge in a nap after i get home from work.

Kyana, remember when you and i used to plan date nights on Fridays, but i’d always end up passed out by 7:00 pm after putting in a 65-hour workweek with Rose Linda Elementary School and Teach for America?

Nikita, remember when you and Kyana used to lie in bed on each side of me and literally count backwards from ten to one, just to emphasize how quickly i could fall asleep?

I think i would chop off one of my own fingers just to get those days back again.  Sorry, Jenna.  It’s probably still too soon.

Mercury-in-retrograde, you were a lot to handle this time around.  I’m thinking about all that happened during this most recent three-week cycle of yours.  You started on April 28, which just so happened to be the day i was walked off the facility and temporarily banished from work.  You kicked off your first weekend by reminding me that i don’t have the willpower or ethics i delusionally believe that i have.  You showed me the very next weekend that i will break my own promises to myself even eight years after i make them.  You proved that i can’t always hold in my tears until after i get home and close my door from the rest of the world.  You set me up on dates with two different seemingly adorable guys, knowing very well how much i prefer to avoid venturing outside of LesbiLand.  You emphasized that the few womyn who miraculously get me to romantically love them will *always* reserve very unique places in my heart, no matter how many years, circumstances, miles, and other womyn pass us both by.  You influenced an old coworker, two Dinah Shore acquaintances, a high school theater buddy, five former students from three different schools, a roommate from a decade ago, an ex-girlfriend, an associate i met once from the Cancer Support Community of AZ, and two Internet-based almost-friends all to reach out to me from out of the blue.  You provoked recurring dreams of even more people from my past whom i stubbornly refuse to reach out to myself.  You jump-started my radiation treatment.  You took me away from work and then brought me back right in the middle of a term/block/marking period.  You brought one of my roommates gracelessly to her knees right in front of me.  You threatened my mom with the same cancer i have and then stopped communicating with us about whether or not she will follow in my footsteps.  You did all this … and then kept me restlessly awake soooo many nights thinking about those two particular exes who kind of broke me beyond repair, before permanently walking out of my life without any desire (theirs *or* mine) to return.

Today, Dr. Patel advised me to read The Power Of Now.  Apparently, she thinks that my insomnia will be cured with a self-help book on spiritual enlightenment.  Normally, i would have laughed in the face of anyone who made such a suggestion to me – the agnostic, anti-self-help book psych major – but honestly, i was too fucking exhausted to do anything other than smile and nod.

 

(16-05-14) Progress Update

HOW I KNOW I AM GETTING BETTER

  • My muscles are no longer screaming for oxygen.  A month ago, just walking across the street would leave my whole body burning like i was hiking a steep mountain.  Now, the only time i get this feeling is when i am exercising at the gym.
  • I can eat what i want again.  Nothing tastes like metal.  Chewing no longer feels tedious and nausea-inducing.  If i eat something fried, i don’t immediately get sick afterwards.  Bathroom trips are back to normal.
  • My energy is building.  If i have to run errands all afternoon in the Phoenix heat, i can do it.  There was a point where i would get exhausted from going to just one doctor’s appointment in a day.  This past Thursday, though, i had eight scheduled appointments/tasks, and i completed seven of them.
  • My strength is building.  A couple months ago, i tried to do one push-up and fell flat on my face; i also couldn’t even lift my hands behind my head to do a sit-up.  Yesterday, i completed two modified versions of push-ups and made it to double digits.  I still couldn’t do a full sit-up, but i was able to put my hands behind my head in order to do 30 crunches.  Minor improvements are still improvements….
  • I’m starting to fret about trivial things again.  I made a point to put on make-up yesterday before my radiation appointment; 2-3 months ago, the only thing i consistently cared about was making sure i eliminated the vomit smell out of my mouth before leaving the house.

 

HOW I KNOW I AM STILL NOT THERE YET

  • I feel hung over after a busy day.  Thursday was a prime example.  It started with a trip to the gym at 5:15 … to a 7:30 coffee date … to a 10:00 FFD exam … to a stop at Optical Expressions to fix my broken glasses … to lunch at Cafe Rio’s, where i got hit on by a cop … to chemotherapy … to radiation … to the dermatologist.  I was supposed to head to central Phoenix after this for a 6:00 Cancer & Cannabis workshop, but i had no more energy left.  The next day, i was completely drained.  My gym trip was pushed back hours after my plan, and i spent most of the day lying in bed mindlessly watching TV.  The lack of energy and delayed cognitive reaction truly felt like i had spent the night before out partying, and it took me almost all of Friday to regain my strength and focus.
  • Things still have to be modified.  I cut my workouts short.  I adjust the way i try to do push-ups and sit-ups.  I still have to ask my roommates to do certain cleaning tasks.  I have to take breaks in between activities.  I limit the times i need to multi-task, especially regarding work on the computer or instances where there is background noise.  This continues to be a huge source of frustration for me.
  •  My body continues to remind and betray me.  It’s not just the weakness and the lack of energy.  The scars and tears along my chest still look red and raw.  I am starting to see a sunburn spreading across the area i receive radiation.  My right expander is growing tighter and harder, another side effect from the radiation, and accidentally turning over on that side in the middle of the night causes me to wake up in pain.  I find myself avoiding having to even look at my body, which is not only unhealthy but un-feminist.  I should be proud, right?  I should look at those marks, and i should revel in the battle scars that show i survived something major.  But i don’t.  Not yet.  And this alone lets me know that i still have a lot of work to do on this journey – not just medically, but within myself.

(16-05-10) FFD Exam Rescheduled

4:30 – roommate waking me up to go to the gym

5:35 – already ready to trip myself on purpose on the stair climber just so i can get off

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6:20 – soaking in a bubble bath laden with essential oils, purposely refusing to let myself stress out

 

 

 

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6:55 – stressing out anyway because i can’t figure out how to put on this damned shirt

 

7:05 – asking my roommate to help me figure out how to put on this damned shirt

 

7:20 – heading to my appointment

7:50 – pulling up and surreptitiously turning on my phone’s Hi-Q MP3 recorder

7:55 – filling out new patient paperwork

7:59 – getting summoned back to the front desk

“We’re going to have to reschedule your exam.  The doctor hasn’t had enough time to review your medical records.  Would Thursday at 10:00am work?”

Desiree and i discuss this new appointment day/time, and I promise to call her if i am unsuccessful in moving one or both of my other two appointments on that day.  I make a concerted effort to display a cheerful, flexible demeanor, but i have to ask.

“Do you know when the doctor received my medical records?”

Friday.  Apparently, they were hand-delivered Friday afternoon, and someone just put them on the doctor’s desk. The doctor, who wasn’t in the office that day, did not see them in time.  (I’m reading between the lines, but i am guessing that he just saw those records right around the time i checked in for my appointment.)  (I’m also reminding myself that this place is another state government agency, so i shouldn’t be the least bit surprised that this is happening.)

“Could you please let my employer’s HR department know what happened today?  I don’t want them to think this has anything to do with me.”

Desiree smiles sympathetically.  “Sure, i can do that.  Do you want to give me a good number i can call?”

“Actually, will you send an email instead?”

“No problem.  I have an email address on file; someone from there emailed me yesterday.”

“Could you please CC me?”

I am not taking any chances.

 

(16-05-09) Still Feelin’ the Love

When a loved one is going through something major, it’s easy to step in right then and there to help.  At least, for me it is.  You hear someone you love crying or venting or worrying, and right away you feel their pain, feel this instant need to SAY something … DO something … to get them through it.  You reach out a helping hand to that loved one, they take it, things get better, they appreciate you for whatever it is that you did, and you both move on with your own lives.

… but what happens when that “major event” drags on and on … when one thing leads to another, then another … and the days become weeks, and the weeks become months?  Can you honestly be expected to continue reaching out a helping hand during that whole time?  I mean, come on.  You only have TWO hands – and a life of your own.

I thought about this a LOT back when i was still out on FMLA.  I remember feeling completely overwhelmed by all the people reaching out to me after my surgery in November, which is when i first started (slowly!) telling people.  According to my Verizon statements, I spent 55 minutes talking on the phone and sent/received 1,995 text messages from August-September, which was right before my cancer journey started.  Just two billing cycles later, my statement showed 615 minutes of talking on the phone and 2,297 text messages … and just last month, i was up to 4,259 text messages.  IN A SINGLE MONTH.  So, like i said, i remember feeling completely overwhelmed by all the socializing that was suddenly happening in my life.  I mean, this was just the phone.  This doesn’t even count emails and Facebook messenger conversations that also quickly doubled, then tripled.  This also doesn’t include the dramatic surge in house visits and the social outings to catch up over coffee or food.

Whenever i would feel overwhelmed, i would remind myself, “This isn’t going to last forever.”  I wasn’t talking about the cancer.  I was talking about all the socializing.  In my head, i just took it for granted that my loved ones would slowly start to fall off the radar.  Isn’t that what happens in times like these?  Don’t we hear all the time that monumental life experiences end up showing you “who your true friends are?”

Loved ones, i completely underestimated you – and for that, i am truly sorry.

It’s been seven months since i found out i had advanced cancer …
… six months since i had a double mastectomy …
… five months since i started chemo …
… four months since the chemo began breaking down my body …
… three months since i went back to work …
… two months since i started officially fighting with my employer …
… one month since chemo ended …
… 1.5 weeks since i went on paid administrative leave …
… and four days since i started radiation.

And you are
ALL
STILL
HERE.

Simply typing this fills my eyes with tears and clouds the words forming on the screen in front of me.  I have to stop and grab a tissue to catch the emotions pouring out of my eyes and nose, just so i can finish typing these last few sentences.

I love you.
All of you.
I didn’t even realize it was possible to open my heart and let in all this love, to open my world and let in all this light.

From the former coworker/acquaintance i called out of the blue back in October (before i was ready to tell my friends and family yet) to ask her about her battle with breast cancer and to get help writing out my first to-do list for my own journey …

… to the ex-girlfriend who just spent this last weekend reminding me how much we are all capable of growing and loving and shining …

… and to every single one of you in between who has BEEN HERE with me, fighting this fight alongside me and never letting me think for one goddamned second that i am in this battle alone …

THANK YOU.

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(16-05-08) Getting Back to the Gym

I used to be so goddamned judgmental when people would procrastinate or avoid getting back into exercising.  “Just go to the gym!” i would think, when time and time again i’d hear friends/family/acquaintances/girlfriends/coworkers complain about the extra weight they didn’t want on their bodies.  To me, these people loved to complain … or, worse, turn into that person who constantly made self-deprecating fat jokes before bringing the conversation around to MY body size, telling tell me how i have it SOOO easy because i didn’t just have a kid, or my metabolism is CLEARLY higher than theirs.

“Stop making excuses.  People can lose their pregnancy weight.  You have no proof that my metabolism is higher.  Yes, you DO have the time.  So what if you’re always tired after work?  Just fucking go to the gym.”

And since my slightly higher propensity for being judgmental is clearly one of the life lessons i am supposed to be working on throughout my cancer experience, i find myself relating to those people who avoid getting back into exercising.

Exercising when you are going through cancer treatment SUCKS.

For months, i didn’t go to the gym because i was too tired, weak, nauseous, lightheaded, and prone to infection.
Then the nausea and light-headedness went away.
Still i didn’t go.
Then my white blood cell count returned to a normal, stabilizing level, so germs on the L.A. Fitness machines were no longer a serious concern.
Still i didn’t go.
Then i was able to get through entire days at a time without having to lie down to rest.
Still i didn’t go.
Then i suddenly realized one day that my muscles no longer burned whenever i had to walk anywhere, and i was able to pick up items like the box of litter or the bag of groceries without problems.
Still i didn’t go.

It dawned on me last week that i was making excuses.  I wasn’t avoiding the gym because of my health.  I was avoiding it because i was embarrassed that i would have to start from the bottom.  I remember the first time i started working out.  I was 18 or 19 years old.  I was in my sophomore year of college, and Laura Capitano made me go.  I lasted five minutes on the elliptical and rewarded myself with a king-sized Haagen Daz ice cream bar afterwards.  By the end of my sophomore year, i was proudly staying on that elliptical for a whopping 15 minutes, and once a month i would lift a couple of free weights for five minutes (max).  I would go to the gym once, maybe twice, a week and eat Haagen Daz after every session.  That was 1999.  Flash forward to 2015, and i am running half marathons on the elliptical at a resistance level of 12-15.  I am exercising three times a week with cardio machines at the gym, racquetball games, and hiking expeditions.  It was now unheard of for me to spend less than 90 minutes working out.  Gym time was typically two hours, and hiking trips could last all day.

Truthfully, i was proud of my progress and the results i had to show for it.

Now i have to start over…

..and i don’t wanna.

So last week, i made an effort to get over myself.  I had an entire week off from work, a body that is clearly making physiological improvements, and this recent revelation nagging my conscience.

Monday, i went to the gym.  I lasted a whopping 9 minutes on the elliptical before i left, exhausted.

Wednesday, i returned.  This time i went with my roommate, partly because i knew it would force me to stay longer.  Sure, i had to take a break on the stair climber every 2-3 minutes because of the fatigue … but i stayed on there for 15 minutes, then went on the elliptical for another 12.

Today, i went back.  This time, i was rocking a newly purchased ensemble from Lululemon – ridiculously overpriced, but perfectly color-coordinated … and we all know how much color coordination is the key to a happy life.  I still had to take two breaks on the stair climber in a mere 7 minutes, but i spent a total of 30 minutes spaced out between the stair climber, the elliptical, and the treadmill.

gym - treadmill

Was i embarrassed at the gym today?  Yup.

Was i proud of myself for my progress?  Admittedly, no.

Was i shocked as hell when a complete stranger stopped me on my way out to tell me how pretty i was?  Fuck yes.

… but i took steps this week to stop avoiding and stop procrastinating … and, in time, i know there will, once again, be something to show for it.  So i guess that has to count for something.

And now i can spend the rest of the night feeling *perfectly justified* lying around with my dog and catching up on “my shows.”

(16-05-05) Radiation

Today was my first day of radiation.  I went through a trial run yesterday, where they lined me up in the machine and basically shot laser blanks at me just to make sure everything ran smoothly.  (Positioning is key in radiation because they only want to zap the areas where my breasts and infected lymph nodes were; they don’t want to zap surrounding areas [like my lungs or my ribs] because radiation has its risks, so they don’t want to potentially damage areas that weren’t even impacted by cancer cells.)  Today, though, i actually got zapped for the first time, and let me tell you this: radiation is a piece of goddamned cake compared to chemotherapy:

  • It actually took me more time to change in and out of that pink dressing gown than it did to go through the radiation treatment itself.  In and out in 40 minutes, compared to sitting for 6 hours and getting injected with 7 bags of medications?  Yes, please!
    radiation machine
  • I got to wear this fancy little gold lame (luh-MAY) number on my chest.  I felt like a drag queen, all tooted up before a performance.  Apparently, i will wear this for every *other* session; it affects how deeply the radiation beams penetrate into my skin.  If i ever bring someone with me to radiation, i am going to have them take a picture of this, since i can’t seem to find an image anywhere on the Internet.
  • Radiation only lasts until June 13 – six weeks of this, compared to four months of chemo.  I was initially told i would probably have to go for seven weeks.  I don’t know what changed for the doctors to decide that six weeks was sufficient, and i’m not going to ask.
  • Side effects won’t happen for weeks!  Sure, i’ll experience light doses of fatigue right around the time when the fatigue from chemotherapy really starts to fade.  Sure, i’ll have a sunburn so severe that it will actually creep up my neck and penetrate all the way through to my right shoulder blade.  Sure, my right breast and arm are going to swell, and i am going to suddenly find myself dealing with some intense sore throat that won’t seem to go away.  But none of this is going to happen until somewhere around the end of the 2nd week or the beginning of the 3rd.  Considering i just went through five months of never-ending side effects that just piled one on top of the other, having a couple weeks off from side effects is truly appreciated.
    There was one side effect mentioned on the AZ Center for Cancer Care’s website that made me chuckle:
    radiation side effect
    C’mon folks.  I mean, i know there are physical changes that come along with radiation, but they just seem a little … insignificant, compared to the rest of my treatment.  I mean, six months ago i had my boobs hacked off.  Surgery left me with long scars, hollowed out nipples, Tupperware containers for breasts that split open and created more scars, asymmetrical “boobs,” and two nipples darting off in their own directions.  Chemotherapy left me with a bald head, patchy eyelashes and eyebrows, a drastic decrease in muscle mass, dry and shriveled up skin that is extremely pale after being on strict restriction from the sun and the tanning beds, and about 60% of my booty missing.  I’m pretty sure that surgery and chemo changed my body self-image, and i can’t imagine radiation having any life-changing impact on something that has already been completely knocked to the ground and kicked while it’s down.  Furthermore, why the hell would i want this new-and-NOT-improved body to be more “held and comforted during this time?”  Um… no thank you … don’t touch me … don’t look at me … yeah, maybe we can have sex, as long as the lights are off … stop looking at me … seriously, don’t touch me … you can embrace me and focus on me in about eight more months, after treatment is over, my implants are in, my scars have faded, and i’ve reunited myself with L.A. Fitness.
    Yes, i know: “improving body image” will definitely be on my to-do list once treatment is over.