Schedule: Week of November 5-9, 2012

Monday [Radiation Therapy – Day 6]:

7:10am-8:25am Drive from Home to RTher

[fucking traffic! – being late on Monday morning is a shitty way to start the week]

8:25am-8:35am RTher
8:40am-9:00am Weekly visit with ROnc
9:05am-9:20am Drive from RTher to Work
9:20am-1:00pm Work
1:00pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-5:45pm Drive from Work to Acupuncture
5:55pm-7:00pm Acupuncture
7:00pm-7:45p Drive from Acupuncture to Home

Tuesday [Radiation Therapy – Day 7]:

7:00am-8:20am Drive from Home to RTher

[fucking traffic, again! – because starting my day off stressed for more than an hour is so conducive to being healthy, Not!]

8:25am-8:35am RTher
8:35am-8:45am Post-RTher ablutions

[first aid cream on the nipple scar, scar cream on all 5 surgical scars, super-moisturizing cream on the whole boob – plus massage to minimize tissue damage, deodorant – no antiperspirant for me during radiation (aluminum on the skin interferes with the killing of the cells, dontcha know?), and no creams or goops of any kind for 4 hours before radiation treatment (again, interferes with that killing goal)]

8:45am-9:00am Drive from RTher to Work
9:00am-1:30pm Work
1:30pm-2:30pm Lunch

[Acapulco: Carnitas]

2:30pm-530pm Work
5:30pm-6:35pm Drive from Work to Polling Place

[with 1 stop to get gas]

6:35pm-6:40pm Vote
6:40pm-6:45pm Drive from Polling Place to Home

Wednesday [Radiation Therapy – Day 8]:

7:05am-8:05am Drive from Home to RTher
8:10am-8:30am Wait for RTher/Meet social worker

[it seems the machine wasn’t behaving this morning (it is tested every morning I guess before the first patient – me – is put on it) and it took a few minutes for someone to beat it into submission]

8:30am-8:40am RTher
8:40am-8:45am Post-RTher ablutions
8:45am-9:05am Drive from RTher to Work
9:05am-1:00pm Work
1:00pm-2:00pm Lunch

[Marie Callendars: Chicken w/ artichokes & mushrooms over pasta.

Are you noticing a pattern here?  Yeah, me too.  And I thought I was doing so well Not stopping at Starbucks every morning on my way from RTher to Work.  The good news is that lunch each of the last two days has yielded enough leftovers for two more full lunches, and I do eat leftovers (Hubby doesn’t), so if I can remember to eat that for lunch tomorrow and Friday, I’ll spend no more money on that, waste no food, and I can eat that at my desk if I want so maybe I’ll get my ass out of my work chair and back up walking again.

That’s something else that has changed (and not for the better this week).  I’m starting to fall into the non-smoker’s (72d CFT today!) bad habit of Not getting up for morning and afternoon breaks since my body is no longer sending up a cry for it’s fix every 2 waking hours.  Okay, starting this afternoon, I resume my twice daily walk around my work block).]

2:00pm-5:30pm Work
5:30pm-6:35pm Drive from Work to Home

[Up from 3:00am-4:00am: woken up by animal noises outside my open window – potty, back in bed, nose congested, use polysporin to moisturize/decongest, back in bed, drifting off as more animal noises outside, close window, pick up Kindle – next thing I know I’m hitting snooze, again, on the alarm.]

Thursday [Radiation Therapy – Day 9]:

7:00am-8:10am Drive from Home to RTher

[Big shout out to Hubby (he won’t see this, I don’t think he reads me – he figures he sees me every day, he gets all the info he needs about how this is going directly from me, and the occasional medical event he attends – meeting new doctors, surgeries, first new treatment of any kind – although he is willing to come to Any and Every medical event I Want him to come to) – last night I was complaining about the stress of trying to make it to RTher every day (comparing it to the stress of getting to a former job on time when it was a 2-hour commute – yes, that is Not a typo – One-Way,  in good weather – longer in bad weather), and this morning (as he goes to work before me and heads to just the city before the one where I work in the exact same direction/route as me), he texts me with a traffic & weather report so I know what I’m in for on my way!]

8:10am-8:20am RTher
8:20am-8:25am Gooping up/applying deodorant
8:30am-8:45am Driving from RTher to Work
8:45am-1:00pm Work
1:00pm-2:00pm Lunch

[Trip to Whole Foods: A cousin of mine (no, not the same one as has a birthday this week) posted a smoothie photo that had a blurry bottle of Synergy Kombucha in the background, so we had a little convo about that in the comments for the post, and it reminded me that I love that stuff and hadn’t had any in way too long, so I’m using my fabulous one-hour lunch today to go pick some up (along with the tomatoes and green onions that Hubby did Not pick up at the market the other night when getting “salad stuff” – okay, he’s amazing but not perfect – but then neither am I , so that’s okay.]

2:00pm-5:30pm Work
5:30pm-6:45pm Drive from Work to Home

[It’s only a little rain, people, not That big a deal!]

Friday [Radiation Therapy – Day 10]:

7:00am-8:00am Drive from Home to RTher

[Back to a regular Friday light traffic patter, with time for my weekly (yeah, I know, but that’s my story and I’m sticking to it) Starbucks treat stop – but this time I was involved in conversation with someone and forgot to pick up the new Starbucks/iTunes Freebie cards – sorry work-peeps!]

8:00am-8:10am Waiting for machine calibration – met and chatted with another patient “Dana” until my machine was ready for me
8:10am-8:20am RTher
8:20am-8:25am Post-RTher ablutions
8:30am-8:45am Drive from RTher to Work
8:45am-1:00pm Work
1:00pm-2:30pm Lunch

[I get an extra-long one today ‘cuz after building in ‘life is screwed up’ time into when I scheduled my RTher, I now end up with extra already-worked time on Fridays sometimes, and I know work doesn’t really want me taking off early (tho that’s what I would prefer to do), so I’m just tacking it onto lunch instead.]

2:30pm-5:30pm Work
5:4opm-6:45pm Drive from Work to Home

[Yeah, got caught up in reading my, well, personal email at the end of my workday and ended up staying 10 minutes late!

Additional Tasks Accomplished This Week:

– walked at least 20 minutes um, some days
– blogged
– VOTED!
– wished my cousin Happy Birthday on Facebook
– paid some bills
– cleaned up bedroom, put clothes away
– gave $100 to a fund for the family of a co-worker of Hubby’s who died on the job this week  😦
– remembered to write check for every other week housecleaner And actually leave it at home for her

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Radiation Therapy Journal – Day 10 – Friday November 9, 2012

Treatment Notes:

– some warmth during the up-from-under portion of today’s program, otherwise not much, kinda in-zap-out

– one of my guys loves Friday like I do – another one of my guys was looking forward to seeing my Mom on Monday

– waiting for my guys to test the machine this morning I met another patient in the girls waiting area (they’re segregated by gender – for patient privacy – which is a pretty good thing – lots of people are more modest and more freaked out about that stuff than me, and that’s fine too), “Dana” and we had a nice chat while waiting for our respective machines (I think she’s either the 8:00am or 8:15am slot on one of the other two machines in the place).

Side Effects:

– lightheadedness/dizziness, fatigue, nausea: at the end of my morning walk around my work block, just as I was getting back around to my building I got all three kinda at once.  I had started to become worried that this journal was gonna get boring, but this cancer thing really is an hour-by-hour, day-by-day thing.  Kinda like the weather in Hawaii – wait 5 minutes and it’ll change.

– yeah, so 11:00am, nearly on the dot, as I’m coming back from taking my morning walk around the block I ran out of gas.  I guess I’m pretty done for the week.

– I know these twice a day short walks are good for me, on a number of levels, but today, they both seemed to just make me more tired than I was before.  The afternoon one seems to be “hitting the wall #2” today alone.

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Radiation Therapy Journal – Day 9 – Thursday November 8, 2012

Treatment Notes:

– some warmth during the up-from-under portion of today’s program, otherwise not much, kinda in-zap-out

Side Effects:

– lightheadedness/dizziness again: after doing my schmear the boob with all the healing stuff & apply deodorant, as I’m walking from the center to my car – tried some deep breathing for more oxygen, didn’t seem to help.  Made it to the car okay and no concerns about driving, but weird…actually Did look this up on the ‘net yesterday and it seems not that uncommon – another thing nobody mentioned ahead of time, fun.

– Yeah, the lightheaded thing happened again today, on one of my work break walks around the block.

– a little more pain today, but not bad.

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Radiation Therapy Journal – Day 8 – Wednesday November 7, 2012

Treatment Notes:

– I was late Again this morning, but Not as late as they were (Please see “Schedule: Week of November 5-9, 2012.”)

– Otherwise, nothing really except being chilly this morning when I peeled down to skin (makes it sound sexy, doesn’t it?) for the deal so my female “guy” considerately offered, then got me a heated blankie (well, for from the navel down at least, but it did help and it was very nice of her to offer so quickly after I mentioned it was chilly!)

Social Worker Visit:

– I had planned to find her after my treatment.  Apparently, the waiting room receptionist let her know I was here and she found me in the interior waiting room while my linear accelerator was misbehaving this morning.  So we chatted.  She was very nice – basically just wanted to make sure I knew whatever assistance resources I needed (transportation & some other stuff I likewise don’t need – at least not today) were available to me if I Did need them.  Just a basic meet-n-greet, so if I needed her and/or the services she could hook me up with, we’d already know each other.  Very nice.

– While I was sitting there with the social worker (since I don’t gown up every day, so I was in my street clothes), someone who clearly works there saw me Not gowned and asked if I was a patient.  As I was in the middle of a sentence in conversation with the social worker, I answered ‘yes’ without thinking and went back to my conversation without missing a beat, as they say.  Afterwards though, I thought about it.  My first thought being “I know why you’re asking and I Hope you Don’t go there with Me!”  (Please see “Schedule: Week of October 29-November 2, 2012.”)

Side Effects:

– lightheadedness/dizziness again, twice: once walking out of the Disney Family Cancer Center to my car right after RTher this morning, and again this afternoon just by getting up from my desk and walking down the hallway.  Okay, so not a side effect of anti-nausea meds ‘cuz I didn’t take any this morning (supposed to be taken 30 min before radiation which is smack in the middle of my drive To radiation – yes, that means I drive an Hour to RTher Each Morning) as I was too busy just trying to get there on time.  I’m still left with is it a blood sugar thing, or now maybe just another side effect of radiation therapy nobody bothered to tell me about?

[In case you’re thinking, as I repeatedly speculate about causes of things and what’s happening in my body/life as I go through this, that I should instead just look it up or ask someone – try walking my walk and Then you can decide I’m being lazy, or using my disease as an excuse for how much I’m Not getting done in my life right now.  Hm, that previous sentence right there just may be called projecting by some, and I’m not sure they’d be wrong.  Ok, time to be kind to myself, and get back on track with this post.]

– more energy and less pain (at least until 3:30pmish) again today.  I’m going to go ahead and credit the acupuncture and hope to hell it lasts until my next treatment.  I’m well aware of the fact that my feeling better about the things I asked her to work on could very well simply be the placebo effect . . . but even if it is, does that really matter?  🙂

– and we have a new one today, or at least it got noticed today – Lefty’s areola is huge!  Okay, I’ve never had big ones.  I used to say they just never grew up and when they were the same size I was mostly okay with that.  This remained mostly the same it seems to me pretty much up through the beginning of RTher.  And then this morning the left one is twice the size of the right one!  Fabulous.  I hope this change is not permanent, though I have been warned that some of the skin changes during RTher may indeed be permanent.  Um self-pity warning – I’ve gone through a lot Already to try to come out symmetrical on the other end of this bullcrap – if this is permanent, it’s gonna suck!

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Radiation Therapy Journal – Day 7 – Tuesday November 6, 2012

Treatment Notes:

– it’s films day!  Every week or so, they take new films to make sure they’re treating the correct area according to the plan – you know, killing the tissue they mean to be killing.  🙂  So today was a couple minutes longer than usual, and I got to meet someone new (a she, but for ease of language, she’ll just be “one of my guys” going forward) who I guess is interning for a year or so at this facility.

– got the last of my parking validation tickets – thank the Goddess for small favors, right? – Okay, that’s just bitterness, pure and simple.  Yes, it is nice of them to provide parking validation for my radiation treatments, they don’t have to do that. <sigh>  Better?

Social Worker Visit:

– I was told after my treatment that the social worker was looking for me.  So I did my post-treatment ablutions in the restroom off the main lobby waiting room and when I was done, she was there waiting for me.  Thankfully, she asked me if I had a few minutes to talk instead of just launching into whatever she wants to talk to me about.  Unfortunately, after traffic making me late to work, and spending a few extra minutes with one of my guys to receive the balance of my parking validation tickets, signing the paper saying I had received all of them, and waiting ’til he copied the paper that I signed saying I had received them all for me (some call me the “Paper Nazi”), the answer was actually ‘no,’ as I had to get back to work.  She accepted that gracefully (yay!) and said she’d catch up with me tomorrow.  So, tomorrow when I head back to my guys (assuming I get there on time – which is Exactly why I built in time between being there and getting to work – I was On Time to work today!), I’ll let the waiting room receptionist know I have time to see the social worker, so stay tuned for tomorrow’s episode of Radiation Therapy Journal!

Side Effects:

– lightheadedness/dizziness as I’m walking from my car to the elevator in the parking garage at work.  Hm, had a little (and I do mean little – only about 100 calories or so) bite on the way to RTher this morning.  Is it a food thing, or something else.  I also took the anti-nausea meds 30 min before RTher this morning and yesterday (also had lightheadedness yesterday).  Hm, side effect of the meds?  Must look up same online.

– lots of energy today, but it was getting perceived by my mind as anxiety (maybe ‘cuz I was anxious about wanting to get my vote in!).  Why after so many days of fatigue claims am I now having extra energy?  Last night’s acupuncture must have been it.  There is a program of integrative medicine at the Disney Family Cancer Center, including acupuncture, which I’ve been getting on the Mondays of non-support-group weeks (I figure I can do 1 “extra,” as in not-strictly-required-but-still-helpful/recommended thing each week, but not more, so I’m staggering acupuncture and support group).  As Disney participates in many teaching programs with other institutions, including acupuncture, I’ve been getting treatments from students (supervised by someone fully-trained of course) on their 10-week internships.  I really like the student I’m working with now and would love her to stay (being treated by students saves me $15 a treatment), but I’ll just enjoy it while she’s here, and I’m sure the next one will be good too.  So, she worked last night on first, giving me more energy, and second, some pain relief – hence this notation and the next!  🙂

– less pain than before, until about 3:30pm when it started up again, but still less throughout the evening – Yep, the acupuncture again.  Maybe I should ask for this treatment combination again in two weeks.

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Radiation Therapy Journal – Day 6 – Monday November 5, 2012

Treatment Notes:

– a weird cold burning in the lower lateral portion of the breast during the down-from-above portion

– a clean machine today!  🙂

Doctor’s Visit:

– clearly I’m doing some better after a weekend where nobody got in my face about anything (but I Do Not feel rested starting a new workweek) – when we were going over my side effects I’m having and the meds I’m taking to manage them, I told my ROnc I’m aware of and consciously managing my CNS depressants – therefore, taking Benadryl to sleep and Tylenol #3 for pain management (although I’m likely to be upping my use of that some because I’m still getting too frequent and severe breakthrough pain), but I’m saving my Ativan for the next time I want to drop-kick someone’s head.  🙂  There was laughter throughout the room and she thought that was a very good use of that particular medication.

– so it seems my nipple issues are normal, or in the doctor’s words nipple sensitivity is common.  Mm-hm, so my nipple getting hard for no good reason and thereby causing me pain is common, so glad to know that.  Despite my (ongoing) concerns, I must be gooping up enough and with the right stuff ‘cuz the boob is Not Yet lobstered.  Woohoo!

Side Effects:

– more frequent breakthrough pain up to almost a 5 on a scale of 1 to 10

– lightheadedness/shaking: I’m guessing this is from a blood sugar issue since all I could think of when this started was FOOD, FOOD, FOOD, and when I ate a big bowl of cereal with raisins and most of a large banana (then ate the rest of the banana), I started to feel better.  It seems that lumberjack appetite is still here (‘cuz I’m thinking of having a peanut butter sandwich too).

– fatigue: was yawning on my drive from RTher to Work, and at 11:00am I could easily lay down and close my eyes.

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Radiation Therapy Journal – Day 4 – Thursday November 1, 2012

This is the first time I’m deciding to go to RTher all by myself – you know, like a big girl.

Treatment Notes:

– my RTher asked where my Mom was, why wasn’t she here?  Really?  I finally decide to treat this thing like it’s no big deal in the hope that acting as if will actually make it feel like no big deal (I’m just coming in for some quick RTher and then I’m off to work – no biggie, right?) and he asks me where my Mom is. . .facepalm.  Well, he knows I’m an only child (from talking to my Mom previously), and he also has only one child, so he’s asking from his/her POV.

This actually got me thinking – I went home and promptly asked Mom, Dad and Hubby if they were as involved with my treatment as they want to be, for themselves.  I figured I prolly knew the answer but I asked anyway, separately, each of them.  I’m not sure that I would have changed anything if they had said “no” but thankfully they all answered “Yes.”  So, tomorrow I’ll let Iggy know that I asked, they said yes, and gently (he really is a good guy) remind him that it’s about me first, before it’s about them.

– a little warmth this morning when they did the down-from-above angle

Side Effects:

– late afternoon fatigue – about the time I usually take my walk around the block – 4:00pmish.  I’ll make it through, but tired enough that my eyes are starting to hurt and there is actual yawning.  I’ve been told to expect serious fatigue, at some point before the end of treatment, which could last up to several months after treatment ends (since things are still ‘cooking’ in there – nice, I know).  I’m hoping this isn’t that, but just reaching the end of my usual weekly energy allotment.  Of course my RSurg thinks my body is, in her word, hyper-reactive (and no, for those who are thinking it, she didn’t mean that in the good way – get your mind out of the gutter just for a minute, k?), so who knows?

– intermittent breast pain – some near the hematoma I still have lateral to the nipple and some from the nipple incision, which is now showing almost a pretty cherry red – if I do lose my skin integrity during this, I’m afraid that may be the first spot to go.  Thought about using ice, again, but didn’t – I was too damn tired to deal with it.  Doesn’t make sense, right, and yet it’s true.

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Locks of Love – For Those Who Come After Me

A week before my first surgery, I went to get a haircut.  A serious haircut.

At that point my hair was pretty long, by anyone’s standards, very much like that of Lady Godiva.

I decided to cut it so as to make it easier to take care of after my surgeries (short enough to be washed leaning back into the sink if necessary).  I figured I’d cut off enough to donate to Locks of Love – two birds with one stone, don’t ya know? – for those who come after me.  I didn’t at that point know whether I’d need chemo and end up losing my hair or not, but either way I figured it was good karma and just the right thing to do.

Although I came out of there feeling bald (in the world according to me), I also was not going to let an inch or two keep me from donating since I was cutting most of my hair off anyway.  I had just enough to meet the length they needed and leave me with a just-longer-than-chin-length bob.  Okay, it met both of the criteria, and I knew it would grow back (I’ve always had lots of thick hair), and if I had to have chemo, lost my hair, and it grew back different (as more than rarely happens), well that was a bridge I didn’t even have to admit existed at that point, let alone deal with crossing.

The week between getting it cut and having my first surgery, I had posted for my friends on Facebook a picture of my cut-off ponytail with the caption “On it’s way to Locks of Love.”

Well, then the rest of the week was cleaning up the house, stocking the fridge, doing laundry, setting up the bedroom with what I thought I’d want while recovering and just plain continuing to breathe in and out to keep the anxiety level anywhere near reasonable.

And then there were two surgeries (two weeks apart to the day), follow-up appointments with both surgeons, getting my ass back to work, interviewing new doctors for the next stage of treatment, doing physical therapy for side effects from at least one of the surgeries, starting the next stage of treatment, and getting at least the bare minimum of chores done to keep my life running (food in the house, enough clean clothes to dress to leave the house every day, paying at least some of the bills).

Needless to say, today this ponytail was still on my desk in my home office.

TODAY IT IS GOING WHERE IT WAS INTENDED TO BE SENT THREE MONTHS AGO!  🙂

Here’s what’s going in the package:

And here’s the package all packed up, stamped and heading out to it’s destination!  🙂

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Daily Prompt – “National Bathrobe Day”

National Bathrobe Day is a Holiday that pops up in my life on an irregular basis.

It has actually existed for a long time, long before I got the above name from an ex-boyfriend.

The best celebrations of National Bathrobe Day take some preparation…

– a market run is made to ensure all possibly desired foods/libations are at hand in the house

– it used to be a run to the video store (yes, that’s how old – and beyond – this holiday is) had to be done to rent videos for falling asleep to and other forms of time wasting

– one’s coziest pajama’s or other night/loungewear has to be freshly cleaned

. . . because here are the rules:

1.  There is no answering the phone.

2. There is no answering the door.

3. There is no leaving the house.

4. One must relax, whatever that means to the practitioner, for a whole day.

5. If one has made an error of epic proportions and forgotten some essential item for proper celebration (which item and its essentialness is Completely determined by the practitioner, in her sole discretion) – one May slink out the door to acquire said item, But one May Not actually wear outside clothes to do so (sweats/loungewear and slippers permitted Only – no jeans, real shoes, female upper undergarments, etc.).  Hence the pre-planning.

Why do I think we need National Bathrobe Day?

Because sometimes we all need to give ourselves permission to deliberately, consciously, (temporarily) crawl into a cave of our own devising . . .

. . . to stop the constant doing . . .

. . . to allow for some deep breaths . . .

. . . to give ourselves a chance to get bored once in a while . . .

. . . to allow ourselves a space where we answer to Nobody but ourselves for just a little while . . .

. . . to occasionally take a fucking nap . . .

. . . to allow ourselves just to Be, without a purpose or goal . . .

. . . just because.

Dr. Rex Hoffman – Office Visit – October 22, 2012

First things first, I have No qualms at all about the level and quality of medical care Dr. Rex Hoffman of the Disney Family Cancer Center at Providence St. Joseph’s Hospital in Burbank, California provides.

But medical care and patient care are not the same thing.

Also, this is my own personal opinion of my own personal experience including quotations from conversations I, myself, participated in (which, in accordance with California law – were Not recorded, so my quotations are recollections to the best of my ability).

I absolutely allow for the fact that other people may have other experiences with this doctor, and in fact, fervently hope they do!

And now on to my visit with Dr. Rex Hoffman at 8:00am this past Monday October 22, 2012, which has so far (midday Thursday as I begin this blog post and finished it Friday midday) colored my Entire week, as told through my email to the Medical Director for Cancer Services of the same medical facility:

Dr. Mena Attachment A:

What Part of ‘I Work For a Living – Because I Have To’ is Unclear?

Dr. Mena Attachment B:

Dr. Mena Attachment C:

So, after finally finishing writing, and sending, the email to Dr. Mena – I felt better.

It wasn’t just the writing, but the actual sending, that let me release at least some of what I had been holding on to all week.

We’ll see what this weekend feels like and what I decide to do on Monday – show up for treatment (of course it just so happens that Dr. Hoffman will be at a national conference in Boston when I begin my treatment on Monday – and I would not have known this if I hadn’t made a stink this week – but it’s a bit tough to be there to enforce the policy when he’s 3000 miles away – hehehe), or punt and start from scratch to find somewhere else to have the treatment.  I’ll let you know next week.