Schedule: Week of October 15-19, 2012

Monday:

7:10am-8:15am Drive from Home to Physical Therapy
8:15am-9:05am Physical Therapy
9:10am-9:25am Drive from Physical Therapy to Work
9:25am-1:30pm Work
1:30pm-2:00pm Lunch [Put gas in the car – bought lottery tickets]
2:00pm-5:30pm Work
5:30pm-5:45pm Drive from Work to Acupuncture
5:45pm-6:45pm Acupuncture
6:45pm-7:45pm Drive from Acupuncture to Home

Tuesday:

8:00am-9:00am Drive from Home to Work
9:00am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home [While listening to pre-debate show and debate]

Wednesday:

Woke up at 4:30am – Could not get back to sleep before 6:00am alarm.

8:00am-9:00am Drive from Home to Work
9:00am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Thursday:

8:00am-9:25am Drive from Home to Work
9:25am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:40pm Drive from Work to Mom’s

[Slept at Mom’s to save 1-1/2 hrs driving time Friday morning – not my house, not my bed, couldn’t fall asleep ’til almost 11pm (way past my bedtime)]

Friday:

8:35am-8:55am Drive from Mom’s to RSurg
9:00am-9:45am Appt with RSurg who released me to begin radiation treatments on October 29, 2012 [which means I get my very first tattoos (that I never wanted) next Monday October 22, 2012]
9:50am-10:40am Drive from RSurg to Work [with 1 stop for my usual Friday Starbucks treat]
10:40am-2:05pm Work
2:05pm – 2:35pm Lunch
2:35pm-5:30pm Work
5:30pm-6:25pm Drive from Work to Home

Additional Tasks Accomplished This Week:

– walked at least 20 minutes each day
– blogged
– paid bills
– did laundry
– completed AFLAC claim forms

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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

Upcoming Appts – as of October 11, 2012 (and Probable Holiday Impact)

This morning when my physical therapy was done, my PTher and I reconfigured my upcoming physical therapy appointments to coincide timewise and medical-needwise with my upcoming radiation therapy (which, conveniently, I have chosen to have at the same facility).  When we had rescheduled my upcoming appointments, she printed out a schedule for me so I could be sure of what was what and when was when.

My first glance at the sheet of paper must have had me looking very confused because I was very confused.  Then my PTher reminded me that it showed not just my physical therapy appointments, but all my upcoming appointments for that facility.  The sheet is attached below:

In case you’re missing the import of that – every single line on that sheet of paper is a separate appointment, all mine, and the last radiation appointment is currently scheduled for Tuesday, December 11, 2012.  This is my upcoming schedule, of course, if and only if my RSurg releases me to begin radiation treatment on Monday, October 29, 2012 (because I have healed from my two surgeries to her satisfaction that the radiation therapy will not seriously damage me), which RSurg appointment is currently scheduled for Friday, October 19, 2012.

If she does Not release me to radiation when I next see her because I have not healed enough for her to do so, then every appointment in the above image starting with the October 22, 2012 appointment to do a CT simulation of the radiation therapy and get my tattoos (see upcoming post “My Boob Is Not the Mona Lisa!”) and continuing to the bottom of the page will be pushed however many weeks she decides I still need to heal before starting this next phase of treatment.

And now we get to the second part of this post’s title – Holiday Impact.  Please take notice that while I will (hopefully) be aware of Halloween, Thanksgiving and Christmas as they come and go this year, I likely will be spending the majority of the next three months or so attending doctors appointments and treatments, working, and sleeping.  I therefore will likely not be:

– giving candy to the kiddies on Halloween (OK, because of where I live I really don’t ever do this anyway)
– giving any thought whatsoever to a Halloween costume this year
– participating in any Halloween parties at work or elsewhere
– cooking a full Thanksgiving dinner (OK, another thing I don’t really ever do anyway)
– cooking anything at all to take to any Thanksgiving dinner I may manage to attend
– bringing a Hostess Gift to any social occasion at all I manage to attend
– buying, writing, stamping and/or mailing holiday cards
– OR
– choosing, shopping for, buying, wrapping and/or delivering holiday gifts – for anybody at all in my life

In other words, I’m giving myself this Holiday Season off – I simply don’t have the time or energy.

And for anyone who is hurt and/or offended by the above comments, or thinks it’s not a big deal and I’m being a wuss – you’re welcome to come keep me company at all thirty-two (32) of those consecutive 8:00am weekday appointments (not including physical therapy and other doctors’ appointments during that same 6-1/2 week period), and then we can both go do a full day’s work after that.  Comment and leave me your email, I’ll share the location with you privately.  🙂

Schedule: Week of October 1-5, 2012

Monday:

8:15am-9:15am Drive from Home to Work
9:15am-1:35pm Work
1:35pm-2:05pm Lunch
2:05pm-5:30pm Work
5:30pm-5:50pm Drive from Work to Acupuncture
6:10pm-7:10pm Acupuncture
7:10pm-8:00pm Drive from Acupuncture to Home

Tuesday:

8:00am-9:00am Drive from Home to Work
9:00am-2:40pm Work
2:40pm-3:10pm Lunch
3:10pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Wednesday:

7:30am-8:30am Drive from Home to Work
8:30am-1:15pm Work
1:15pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Thursday:

7:00am-8:00am Drive from Home to Physical Therapy
8:10am-9:10am Physical Therapy
9:15am-9:30am Drive from Physical Therapy to Work
9:30am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:00pm Drive from Work to Family Event
6:00pm-8:30pm Family Event
8:30pm-9:15pm Drive from Family Event to Home

Friday:

8:00am-9:00am Drive from Home to ROnc
9:15am-11:15am Interview with ROnc
11:15am-12:00pm Drive from ROnc to Work
12:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Additional Tasks Accomplished this Week:

– Acquired my medical files from MOnc, CSurg, and RSurg for review by the ROncs
– Walked at least 20 minutes each day
– Filled out new patient paperwork for Friday morning Interview of ROnc

What Part of “I Work For a Living – Because I Have To” is Unclear?

Rule #1 – I work for a living.

So, I was out of the house at 7:30am this morning and got to work at 12 noon.  What took so long?  Traffic?  Well, in this part of the world there could be an accident bad enough to cause the drive to work to take that long, but no.  What else but a doctor’s appointment to interview (yes, I’m using that word consciously and deliberately) a radiation oncologist at NR Hospital.

Now, I knew this appointment was happening – I made the appointment myself, personally.  When I made the appointment I deliberately asked them how long I should plan on being there.  I was told an hour and a half.  Because I am trying to reduce the effect this craziness has on my supportive employer unless I absolutely can’t work (like directly after having surgery), I’ve busted my ass to bank extra time this week to cover the time I would be late today, thinking I was being generous when I budgeted two hours (half an hour more than I was told today’s consulation would take) plus time for a reasonable drive to work.

This means between the other two medical events I’ve had this week and working longer days than usual to bank some time [and a family event last night I refused to miss and thereby add to the list of events this cancer is forcing me to miss this year because it may be the only time in the next few years I get to meet my beautiful new baby cousin – or you know, have a real/social life], I’ve had two 14-hour days this week (out at 7am and not home until 9pm).  Keep in mind, this is a time when I need More sleep than usual and am getting Less (still recovering from two surgeries – not yet 8 and 6 weeks out from them respectively – and doing physical therapy for surgical side effects, plus follow-up visits for previous treatments, and meeting new doctors for upcoming treatments, yeah and working full time).

Oh, and because today’s appointment took almost two and a half hours instead of one and a half hours, I’m still going to end up short of work time this week.  Now, I will do a lot to try to manage this intrusion into my life, but I do have a limit – and staying after my usual quitting time on a Friday is something that is not going to happen.

Then there’s the appointment itself.

I do realize and acknowledge that every one of the people I met today is caring and supportive and genuinely wants to take the best care of me (and their other patients) that they possibly can – many have chosen this specialty of healthcare after being a patient themselves or knowing a close loved one who has.

And yet…

How many times during one appointment do you think I should have to mention or remind people that I work for a living – not for the fun of it, but to put food in my mouth and keep a roof over my head.  I figure once is fair when I meet a new provider – I mean, they’re supposed to be listening and paying attention, right?  They will blithely reply that they do too and/or that lots of their patients work.

Then they set out a plan like I heard this morning:

– I’ll have a second visit in which they’ll do a CT simulation: they’ll take pictures and measurements of me personally to formulate a plan unique to me to treat my cancer according to how my anatomy is built.

– Then I’ll have a third visit where they’ll do a dry run on the actual machine to make sure the plan is appropriate and correct, then do my tattoos, then have my first treatment.

– THEN, at the end of that visit they’ll schedule the rest of the treatments.

Um, I don’t think so.  Part of my decision of where and with whom I will get my radiation therapy has to do with scheduling the treatments to allow me to work because Please Refer to Rule # 1 – I work for a living.

So, they’ve indicated in some way they’ve heard me say that and then propose a plan that has me taking time off work for two hour-plus-long appointments and getting permanent marks on my body before scheduling the balance of treatment – thereby risking that their availability will not coordinate with my work schedule because Please Refer to Rule # 1.  Can anybody say “ludicrous?”  I knew you could.

Facepalm!

And then, because no matter what they say, the way they present the plan assumes that my entire day is at Their beck and call, I end up feeling like an asshole because I have to tell them “No, that’s not how you’re going to do this with me because it doesn’t work for My life, no matter what your usual procedure is.”  When I’ve stood up for myself, I’ve had people repeatedly tell me they admire and/or respect me for making sure My needs are getting met and being my own advocate, and I appreciate that.  At the same time, I get so frustrated because I really should not have to expend that energy to begin with – I don’t have it to spare, and I should not have to keep reminding all the various providers that the interaction they’re having with me is not about their convenience and/or usual procedures.

So I’m spending the balance of my day – at work and after – crying intermittently from the combined physical/mental/emotional exhaustion and frustration for having to waste energy I don’t have to spare and having to repeatedly remind people of things that are so obvious and still seem to vanish from this process time and time again (sorry, belated run-on sentence alert).

Well, that’s been my Friday – hope yours is better…

BCRCRider