Schedule: Week of October 29-November 2, 2012

Monday [Times after 8:30am approximate – I was out of my routine & not keeping strict track] [Radiation Therapy – Day 1]:

7:30am-8:30am Drive from Home to Disney Family Cancer Center to straighten this out before my appointment at 11:30am [Meet Hubby and Mom to back me up/help me out]
8:30am-9:00am Find the CEO of St. Joseph’s Hospital – Request meeting with same – Get escorted to his office

9:00am-9:10am Throw Dr. Rex Hoffman under the bus with the CEO of the hospital at which he works
9:15am-10:15am Eat breffast w/ Mom & Hubby in the hospital cafeteria – nearly free with coupons from the hospital CEO [wasn’t that nice of him?]
10:30am-11:15am Visit with Nurse Navigator [to make sure I was still welcome in her office, since I bcc’d her on the email in this post – and I was  🙂 – nice chance to catch up] [As I’m walking across the way to the other building I see Dad driving up to join my backup posse]
11:15am-11:45am Wait for my 11:30am first radiation therapy appointment to begin [Dr. Hoffman being the only ROnc in the office today, my care will be changed to another doctor tomorrow]
11:45am-12:30pm First Radiation Therapy appt [w/ Mom, Dad and Hubby as backup]
12:30pm-2:30pm Drive Hubby to his truck [parked and left at a local Starbucks this am to save 1 parking fee at doctor’s appointment] – went w/ Hubby in his truck to a vape store so he could test some flavors [leaving my car in the very same Starbucks parking lot ‘cuz it had already been a tough day and I just wanted to be with him for now] – going back to pick up my car
2:30pm-3:30pm Drive from Starbucks to Home [with 1 stop at a local deli for chicken noodle soup w/ a dry matzo ball on the side – my soul needed it]

Awake in the middle of the night from about 2:15am-4:00am.

Tuesday [Radiation Therapy – Day 2]:

7:00am-8:00am Drive from Home to ROnc
8:00am-8:15am RTher [with Mom in tow since I was seeing the new doc this morning – I try Always to have an extra pair of ears around during doctor’s visits – countless times already someone else has heard something I did not because I get stuck on something and check out of the conversation for some period of time]
8:15am-8:35am Wait for appointment with new ROnc
8:35am-8:55am Appointment with new ROnc
9:00am-9:15am Drive from ROnc to Work
9:15am-1:00pm Work
1:00pm-2:00pm Lunch [a whole hour!  two weeks in a row!  got a couple errands done.  :)]
2:00pm-5:30pm Work
5:30pm-6:50pm Drive from Work to Home [with 1 stop to pick up last minute stuff for work pot luck lunch tomorrow and to have a bowl of candy for kids trick-or-treating in the office, and 1 stop to pick up more meds]

Wednesday [Radiation Therapy – Day 3]:

7:00am-8:05am Drive from Home to RTher
8:05am-8:15am RTher
8:15am-8:35am Waiting to see ROnc [to discuss noticeable side effects Nobody led me to expect I’d have so soon – after Two treatments?!]
8:35am-8:55am ROnc appointment
9:00am-9:15am Drive from ROnc to Work
9:15am-12:30pm Work
12:30pm-2:00pm Halloween Pot Luck Lunch @ Work [& visiting with my work friend’s 18-month-old granddaughter dressed as the cutest pirate ever!]
2:00pm-5:30pm Work
5:30pm-7:00pm Drive from Work to Home [With 3 stops on the way: (1) put gas in the car; (2) Costco – this is a kamikaze run to grab a sweater I’d already bought 2 of (in different colors) in yet a Third color! – Hm, parking lot very empty, what’s up with that?  Oh, right, Halloween – score on the empty Costco!; and (3) the pharmacy Again to pick up the Rx I dropped off last night, and drop off 2 more I got this morning to help deal with side effects of RTher.]

Woke up enough to look at the clock at 3:25am, but managed to get back to sleep without peeing, eating, reading, turning on a light, or even getting out of bed (I think)

Thursday [Radiation Therapy – Day 4]:

7:00am-7:55am Drive from Home to RTher [I actually decided to go all by myself this morning, just like a big girl – and one of my RThers asks where my Mom is and gives me grief about not bringing her with me, for her sake!  (This comes from his understandable perspective of a father with an only child.  Tomorrow I’ll gently remind him that the person at the center of our joint drama isn’t my Mom, it’s me.)  But I did tell him he’d get to see my Mom on Mondays, since Mom will join me on doctor appointment days.]
7:55am-8:05am RTher
8:05am-8:15am Did the PTher I have to do myself to deal with my side effects, and hyper-moisturize the area we’re charring each weekday to hopefully help prevent, well, peeling, weeping, and sloughing of the skin.  🙂
8:20am-8:35am Drive from RTher to Work
8:35am-1:00pm Work
1:00pm-2:00pm Lunch

So, with the start of RTher, apparently comes a new lunch schedule.  Whereas before, I was taking short lunches to make up time taken by randomly-occurring doctor’s appointments, I deliberately made the RTher appointments early enough so that most days (even if slightly delayed by traffic or some other time issue), they would Not interfere with work (I didn’t schedule them so they wouldn’t interfere with work only if timing were perfect every day – this is traffic in greater Southern California I’m dealing with after all).  But that means that most (non-ROnc/non-PTher days) I’ll get to work Early.  Therefore, most days I’ll not only get the hour lunch that used to be my norm, but even after counting the ROnc and/or PTher days when I’ll still be in late, I may even get extra-long lunches on Fridays from getting to work early and storing up some extra work time other days of the week!  We’ll have to see how that works out – or am I just being overly-optimistic now?

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

Friday [Radiation Therapy – Day 5]:

7:10am-8:05am Drive from Home to RTher [With 1 stop @ Starbucks for the weekly coffee treat – yeah, it’s not my only one this week either, I know]
8:10am-8:20am Rather
8:25-8:40 Drive from RTher to Work
9:45am-1:00pm Work
1:00pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Additional Tasks Accomplished This Week:

– walked at least 20 minutes each day (um, except Monday)
– blogged
– managed to carve out a whole hour for lunch at least one day
– threw my doctor under the bus and replaced him with a new her doctor
– used my hasn’t-happened-in-several-months one-hour lunch to practice some minor retail therapy
– rearranged physical therapy appointments to conform with my new doctor’s schedule, shared same with Hubby, Mom, Dad and work
– actually participated in a Holiday Party – the Halloween Pot Luck Lunch at work

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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!  🙂

Copyright Ridingthebcrollercoaster.com 2012 All rights Reserved.

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.

I Feel Better and I Hurt More – Go Figure (Possible Oversharing Warning)

Last week – After my hormones cycled – I realized I felt better.  Now, whether Mom or Hubby or my work friends would say I feel better from what they’ve seen, I have no idea.  I also was still so mentally, emotionally, and physically exhausted by Thursday night that I cried just from exhaustion.

And yet, I think I’m starting to feel better, at least temporarily [please do not lose sight of the title of this blog – that metaphor is used for many very good reasons], and when I say I feel better, it may not last long.  In fact, by the time you read this, it may no longer be the case, but I’m sticking with it for now.

So why do I say that?  Well, first – last week I made a joke – I mean a joke that was not dripping in bitterness or sarcasm (“Um, Bitter, Party of One?” – Shit, I resemble that remark).  It’s a little thing, right?  Wrong.  It’s a big deal after not being able to joke at all, about anything, for so long!  Hubby was in the middle of a story when I stuck my little joyful zinger in there and he continued on with his story until I stopped him and prompted him to acknowledge it.  Some things need their own moment, ya know?  Then, of course, I reminded him what he was saying and listened until he finished his story.

And then there are the following chicken/egg observations:

Time:

It has been six weeks last Monday, October 8, 2012 since my second surgery.  I was told by my RSurg that I had a 10-pound lifting limit until six weeks after surgery.  Now, six weeks is some maybe more, probably less arbitrary time period where a certain amount of healing has taken place, and well, I’ve hit that time point.  My physical therapy has been going well, and although I still think about stretching, extended-type movements, I’m finding I have to ‘pull back’ less or not at all to avoid the pain that is disappearing from those actions.

Sleep:

Last week I started taking Benadryl to sleep.  Sleeping without it just wasn’t happening, and everyone, to some degree or another, does worse when sleep-deprived: pain hurts more, concentration and focus disappear, tempers get short, food choices are harder to keep healthy, energy level drops, mood is more fragile, etc. – we all know the drill.  I was taking 1/2 a Benadryl and upped it to a full 25mg tablet/capsule (keep in mind many people need 50mg or 100mg to get to sleep).  I’ve found that if I give myself more time to sleep I have less of a hangover in the morning from it.  And I’m starting to wake up feeling more rested too.  Of course, that too, doesn’t last long.

[You know how when you’re getting better from being sick, one morning you wake up feeling good, but then you get out of bed and you don’t feel good anymore?  And then the next day you wake up feeling good again and it lasts a couple of hours?  And so forth, until finally you feel good all day and you realize you’re fully well?  Keep that progression in mind, it applies here to many aspects of my current experience, but can also get set back to zero in a heartbeat – roller coaster, remember?]

PMS – Hormones:

A month ago I had a perfect storm of ‘things’ happening on a Thursday night.  Just plain tired with it being Thursday and all, I was irritable due to (unbeknownst to me) it being the day before I realize I’m getting sick, And the hormones were raging (they would crest the following day).  I was seesawing between anxiety at a level of 11 on a scale of 1 to 10, and bawling my eyes out and Not Feeling Any Better For It!

Well, normal service resumed and things crested again this past week, and I noticed in retrospect that while I did get somewhat testy (right Dad?) [But please do keep in mind on general principles that hormones can make things seem worse than they might otherwise seem, but they Do Not create anything out of nothing!], I was in no way as out of control as I was a month ago.  Of course that could be due in part to…

Meds:

1) Anti-Depressant – After last month’s meltdown (I told my family and my MOnc – when things calmed down some – that I had Never felt like that in my more than 4 or 5 years of experiencing this particular phenomena), I contacted my MOnc who authorized me to increase my dosage of this med.  Of course, there is a break-in period anytime one changes dosage on this thing.  So I think I finally got to equilibrium with that.

2) Pain Meds – Not sure how this thought occurred to me – prolly some combination of Mom making a suggestion that I try this, and realizing that I was waking up hurting as I turned over in bed – I began adding 1/2 an Ultracet to the evening Pharmaparty in my hand.  That seemed to help, but I still was waking up hurting when I turned over, so I upped it to a full Ultracet and that (combined with a Benadryl) maybe is allowing me to get some restful sleep and wake up feeling more refreshed sometimes.

Meds Side Effects:

In a deliberate attempt to be obscure here so as to avoid the blatant oversharing label – let’s just say some of the side effects of some of the meds I’m taking seem to have mellowed some in the last week, and so I’m feeling physically slightly lighter.  Moving on…

Pain:

Yes, the title of this post is not a misprint.  I’m feeling better And I’m having More pain.  Weird, I know.  As the swelling continues to SLOWLY recede, the places where it has been so severe that the tissue actually feels hard to the touch (on both sides, mind you) are getting noticeably smaller.  Reminder: everything a double-edged sword – nothing all good or all bad.  As the swelling recedes, the numbness begins to recede.  As the numbness begins to recede, the first sensation reawakening nerves transmit is, you guessed it, pain.

As the swelling recedes, the shape of things changes, allowing some incisions – ahem, I won’t specify, but where is the most cosmetically friendly place to cut to remove something from one of the girls? – (and the sensitive, traumatized skin around them) to experience increased rubbing.  Right.

Plus, after my biopsy, I experienced, in addition to pain in the boob itself, these odd, almost shooting-star-type pains in my abdomen – both front and back, far from any of the incisions at all.  I’m having the joy of those again.  🙂  My MOnc warned me about them as a consequence of my two surgeries, not knowing I’d already experienced them in the aftermath of my biopsy procedure.  They’re weird pains too –

– nothing specific brings them on or makes them better or worse
– they’re stabbing, cutting, shooting-star feeling things
– they are removed from any sensible cause like an incision or swelling
– they can be anywhere from 2-7 on a scale of 1-10
– they don’t last very long (my MOnc told me by the time I take something to treat them, they’ll already be gone – and I’ve already experienced that he’s right about this)

[Any medical professionals recognize P-Q-R-S-T?]

This Blog:

When I first got diagnosed and could not control the thoughts racing around in my head [See “A Tornado In My Head”], it was suggested to me more than once, by more than one person, that maybe just getting some of the thoughts out on paper would help settle things in my cranium.  And indeed, I Know that works for me with chores and tasks type stuff.  Once I get it out of my head into an app that will remind me when needed, I can let it go and move on to other things.  But, for some reason, the idea of putting this down in some black hole (this was how a journal just for myself felt to me) didn’t seem like it was going to do the trick.  And then I started this blog.  Somehow, the fact that this is being sent out into the world feels like the ‘release’ I need (or at least a start thereof), and I’ve been doing this blogging thing about two weeks now, give or take.

I’ll leave it up to you to opine on why I’m reporting I’m feeling better:

– simply time passing
– getting more restful sleep
– having less PMS
– better meds balance
– less meds side effects
– more pain (I have no idea, I plead cancer brain)
– emotional release from blogging

– chicken
– egg

– coincidence?

– or some combination?

I’m open to your thoughts on the matter (though I reserve the right to veto them if they conflict with my reality) but I am curious to hear them…

Schedule: Week of October 8-12, 2012

Monday:

8:00am-9:00am Drive from Home to ROnc
9:00am-11:00am Consultation with ROnc
11:00am-11:15am Drive from Dr. to Work
11:15am-1:35pm Work
1:35pm-2:05pm Lunch
2:05pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Tuesday:

7:45am-8:45am Drive from Home to Work [With 1 stop to get gas]
8:45am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:45pm Drive from Work to Support Group
7:00pm-8:30pm Attend Support Group
8:30pm-9:15pm Drive from Support Group to Home

Wednesday:

8:10am-9:10am Drive from Home to Work
9:10am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:35pm Drive from Work to Home [With 1 stop to get meds]

– awake for two hours in the middle of the night

Thursday:

7:10am-8:10am Drive from Home to Physical Therapy
8:10am-9:10am Physical Therapy
9:10am-9:25am Drive from Physical Therapy to Work
9:25am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work [See “No Good Deed Goes Unpunished”]
5:30pm-7:00pm Drive from Work to Home [With 1 short stop – thanks to fucked up traffic from rain]

Friday:

7:45am-8:45am Drive from Home to Work [With 1 stop at Starbucks for my weekly coffee treat and to pick up Starbucks iTunes Freebie cards for myself and those with iDevices in my office – something I’ve been doing for a long time and something that helps me keep the barest amount of ‘normal’ in my life right now]
8:45am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-8:00pm Drive from Work to Home [With 1 stop at an errand the opposite direction from work as home]

Additional Tasks Accomplished This Week:

– walked at least 20 minutes each day
– blogged
– scheduled all radiation therapy appointments [See “Upcoming Appts – as of October 11, 2012 (and Probable Holiday Impact)“]
– reconfigured physical therapy appointments going forward to mesh with radiation therapy appointments
– notified husband, parents, work about reconfigured appointments