To Schedule or Not To Schedule, That is the Question

I’m not sure I still feel the need to document my schedule as specifically as I have been lately.

Clock

It felt important to me to share with those who (it’s been said to me numerous times) “had no idea” of the degree of chaos and intrusion into one’s normal life that cancer and its treatments cause.  The craziness that ensues from trying to work full-time through radiation (I didn’t quite make it, but didn’t realize until I was almost done with radiation how many people don’t even attempt it!) is really of the batshit-insane variety, and not only did I post for some sympathy (yeah, at some point – well lots of points – this Is actually about me!), but Also to let other people know when I say I don’t have time and energy to see them/do whatever . . .

. . . that there are some times in life when what gets accomplished gets whittled down to the serious bare necessities, and going through radiation therapy while working Is One of Those Times!

In fact, if it weren’t for Hubby, I may well have had to ask for help keeping food in my house.

Fairly quickly, my life became about 3 things and 3 things only:

three-fingers

– Cancer Stuff:

Radiation Therapy
Radiation Oncologist Appointments
Physical Therapy
Acupuncture
Support Group

– Work

As much as I still could, as I went through the 7 weeks

– Sleep/Rest

That was it.

Now that I’m through those 7 weeks, it will take me some time to transition out of that mindset . . .

And I already feel some better (though I don’t yet trust that feeling), not having those 5 additional deadlines in my schedule every week – and knowing the physical symptoms will take weeks to months to fully resolve (both skin issues and energy levels).

This morning was, well, just weird:

– being allowed to apply antiperspirant (at all) and body lotion (right after my shower)

– not having to leave the house until 8:00am

– not having to wear something I could pull down (if a dress) or a shirt I could take off, in other words Not having to wear something in which I could easily expose the girls without having to gown up (sorry, I’m just not a gown girl, for various reasons – this may or may not become a separate post).

You see, it seems to be part of conventional wisdom that it takes six weeks to make or break a habit.  Doesn’t sound right to you?  Okay, this is me Googling it.

My point is that the 7 weeks of my radiation therapy is just enough time for things like not applying antiperspirant, or not applying anything to my underarms and no lotion on my body directly after showering – to stop feeling weird and wrong, and something I have to think about (not doing).  And now I have to work at recreating those habits – recreating those parts of my normal life.  But that still won’t take up the time (and hopefully the energy either) that the radiation therapy took.

So, we’ll see whether I feel like continuing the schedule thing as I have been.  If I don’t, maybe I’ll have time to write some other blog posts, parts of which have been sitting hidden online as drafts for a while.

<shrug>

Radiation Therapy Journal – Day 26 – Wednesday December 5, 2012

Treatment Notes:

– Again, really nothing to feel during treatment, although once they got me into the position they wanted me in, I felt kinda tweaked.  But we can do anything for 5-10 minutes, right?

Physical Therapy:

– today kinda hurt – I’m having some increased swelling, including some into my arm, but certainly into my axilla and down the side of my body.  She also got rid of some adhesions underneath my nipple scar – breath in, breath out, she’ll stop in a minute.

– PTher is also going to start the process of getting me a sleeve.  You see, one of the fun things about this cancer and its treatments is the risk of lymphedema in the affected arm (for me, that’s left) . . . in hot weather, when ramping up exercise, just being at altitude, or plane travel . . . For The Rest Of My Life.  Woohoo!   So they have these spandex or lycra or something sleeves to add some compression to help the lymph system drain more normally.  Though I haven’t had lymphedema in the arm, I could start, at any time.  Of course, sometimes if I need to wear the sleeve, it’s possible that fluid can get stuck down in my hand and cause my hand to swell – more fun – so I’ll have to be prepared with a glove too.  Dontcha wish you could be me?

– On the plus side, however, when I first started getting PTher, she said a lot of people like to do it at the end of the day, then go home and relax.  It turns out that the lymphatic system is very shallow under the skin.  Therefore, very little pressure is needed to move the lymph fluid through the system.  The result of this information is that lymph drainage feels like a very light swedish massage (over the affected parts of the lymph system) and is very relaxing.  Unfortunately for me, because they start early, their “last appt of the day” is nowhere near late enough to be after I’m done with work.  But today, I’m not going to work (same with two weeks from now), so I can enjoy the relaxation of my PTher (after the pain) and go home to nap (after breffast/brunch of course – see my schedule for this week).

Side Effects:

– Tired (yes, I’m getting as bored typing it as you are reading it) – this time it hit me on my way to the car.

– More pain today, though not entirely unexpected after I’ve been (necessarily and as gently as she can) manhandled.  Of course I don’t want adhesions under my scars, of course I want to minimize the tissue damage my treatments necessarily cause.  So I went home (eventually – after brunch & a quick apple-acquisition stop) and lay down – that always helps the pain.

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Radiation Therapy Journal – Day 25 – Tuesday December 4, 2012

Treatment Notes:

– Same old, same old now (if it’s not films/doctor day).  Marina was kind enough to bring me a warm blanket today without me having to ask – she seems to know which days are cold enough to be automatic-blanket days and which days to ask if I want one.  That girl’s gonna do fine (she’s doing her internship with my regularly-scheduled/licensed guys).

Side Effects:

– tired, again (still?) – I keep throttling back on what I’m doing (on wise advice of Dad, trying Very Hard Not to Overdo when I feel okay), and yet it only takes one long day to really wipe me out at this point – the fatigue slammed me midday when I headed out to pick up lunch.

– some nipple pain today, and me with my lidocaine gel down in the car – the good news is the pain’s not bad enough I hafta run down there ‘n’ fetch the gel.

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Radiation Therapy Journal – Day 24 – Monday December 3, 2012

Treatment Notes:

– They needed to do new films today, and have the doctor come in while I’m positioned on the table because I was swollen and she needed to confirm application of cell-destroying radiation – um, okay.  So my guys could see that on the films (that I was swollen from the treatment – if you’ve been reading me you know it actually happened Treatment Day 1 or 2), and I’m imagining the CT scans taken last week to plan the boost Did Not exactly match the CT scans taken a week before I started treatment because treatment made me swell damn near immediately!  But could she have believed me when I told her this 4 weeks ago?!  Apparently Not – she must be a fan of Dr. House (who gets the reference – 1st section?)!  But other than it taking a bit longer than normal – nothing much to see here, move along.

Doctor’s Visit:

– I’m inclined to believe that my ROnc actually did talk to my RSurg last week as she claims she did, for two reasons:

1) Mom pointed out that she said she did in my medical records and she couldn’t/wouldn’t do that if it weren’t true ‘cuz of this little thing called Medical Ethics.  Count on Mom for reminding me of the logical side of things.  But even more than that, I believe they talked because . . .

2) ROnc did Not try to push me into what she thinks I should do.  She walked into the room with printouts (as I had asked her to do) of the boost plan.  She explained them to me.  She then hands me and explains to me several study abstracts backing up her claim of the benefit the boost will provide to me And shows me the fairly good cosmetic results also covered in the studies.

She then tells me that she’ll do her visit notes with me and when we’re both happy, Then (electronically) sign them and print me a copy (to avoid having to void and reissue the notes as I had her do last week regarding my use of painkillers to get through the pain caused by the swelling (that she actually now believes exists) caused by the treatment itself.

She reads the notes right up until the last sentence, which I happen to see as she’s printing and closing that screen: “Patient will be given discharge instruction on last day of treatment.”  I repeat this to her and ask her to get them to me earlier (I don’t need things like that to be last minute in case I end up having questions, but she says they basically say “Call me if you have any questions or problems.”) and then she says she’ll have them printed and I need to bring them back to her, signed, on Friday, which will be my last day of treatment if I decide not to have the boost.

No further pressure – just giving me the information and letting it be my decision.  This is actually why I quit smoking (98 days CFT, BTW!) – because my RSurg Did NOT tell me to quit – she just told me what would happen to my body if I didn’t and I decided all by myself, just like a big girl who doesn’t have to be told, that my boobs and what I was going through to keep them, were more important to me than smoking.  I have to come around to things in my own time.  Forcing me there does not get me there sooner, it Delays Me Getting There.  Christ Almighty, she could have saved me so much angst if she had figured this out sooner!

Side Effects:

– lightheadedness, again – intermittently throughout the day

– So, interestingly totally normal blood pressure (107/62) this morning during my morning activities & the weekly installment of putting my doctor in her place.  Okay, so I seemed all calm this morning.  I figured I’d go with it.  Then midday I get nauseous and start to hurt, badly.  It’s actually my back that hurts, but I know it’s coming from stomach upset – this is a fairly familiar GERD pain pattern.  So maybe my Monday Morning Stuff manifested this way instead of as higher than normal blood pressure.  Okay, so I take a Zofran for the nausea.  30 minutes later the nausea was gone.  The pain wasn’t.  Took a pain pill.  45 minutes later no nausea And no pain!  Yay!  Time for lunch – soup, just to be on the safe side.  All’s well with the tummy for the rest of the day.

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Radiation Therapy Journal – Day 19 – Monday November 26, 2012

Treatment Notes:

– really nothing to report, except for slipping by one of my guys at the front of the suite on my way back to the machine – being Perfectly on time and having him scramble to catch up with me today – hehehe (well, I’d take credit, but I think we’re maybe headed into that amorphous time of half-holiday-light traffic as we gear up for schools to start letting out for Christmas Break (yeah, I’m Jewish, I celebrate Chanukah, I’ve been known to have a Christmas tree, not a Chanukah Bush, get over the ultra-political-correctness already, will ya?)

Doctor’s Visit:

– Yeah, long story short:

She said she called my RSurg, had a discussion with her, and that my RSurg was okay with a “regular boost,” but was concerned that I was getting a “super boost,” and therefore was comfortable with the boost plan in place for me

. . . which claims, all of them, will be checked out by me, hopefully telephonically, with my RSurg, since I trust her, but do Not trust my ROnc to have the Whole Me in her best interest.  I wish I did, but I don’t.  Oh well.

. . . which boost plan has not been drawn up – What?  Yes, the boost plan (the last week or so of treatment where they take the daily amount of radiation currently spread over the whole boob, and concentrate that amount of radiation in the tumor bed only) has Not Yet been planned.

As I was writing the last sentence, my ROnc called me – she wants to get new CT readings (since I’m having some swelling – or she finally believes I am – she never got to see me before I started rad therapy and I swelled almost immediately) but using my existing tattoos – to make sure the boost plan is completely accurate (since my body has changed with the swelling since beginning this treatment, the CT scans done a week before I began treatment may not be accurate to my anatomy today).  Then she will take Thursday and Friday to do the boost plan.  She will print it out for me (like I asked her to do today with the regular plan) so we can discuss it next Monday at our visit.

Then I’ll have all of next week, still on the original and unchanged first part of the plan to decide if I want to do the boost or not (which, if I do it, will start the following Monday) without getting me into a situation where I don’t have enough time to consider boost or no boost before we’re forced to consider an unintended break in treatment.

So, that’s the plan for the moment, so to speak.]

Side Effects:

– Um, other than blood pressure of 140/75 this morning (WAY high for me – I’m usually – well, BC as in Before Cancer anyways – around 110/60 normally), but since I was planning to follow my “new normal” Monday schedule of 1) get my radiation treatment, 2) put my doctor in her place, 3) go to work – I was okay with that reading (this too shall pass) – the good old “white-coat syndrome” magnified and all that.

Update: This early evening before acupuncture, Mo took my blood pressure again – 110/70.  Not surprising at all.  I was having the Pavlovian relaxation reaction just being there knowing what we were about to do was going to make me feel better, immediately and for days to come.

In fact, when I left I shared the elevator down with another cancer patient I had met at acupuncture and we both had that ever so slightly sleepy, very relaxed ‘I just had acupuncture’ look on both our faces and shared that moment together in the elevator on the way downstairs.

– less pain today.  I’m inside the week that my acupuncture treatment effects seem to last (I managed to get another appt with Mo tonight – yay!), and the past 4 days of not having to wear a bra, and being able to rest and/or sleep Whenever I Want have helped too – a much needed break indeed.

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Radiation Therapy Journal – Day 16 – Monday November 19, 2012

Treatment Notes:

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

– I laid myself down on the table this morning Without taking my dress down – they had to remind me (and they were so good about it too)!  Oops!

Doctor’s Visit:

– there’s a first time for everything – I’ve never been treated like an addict before.  I finally realized that is the POV that Dr. Sanghani is coming from.  (Yep, naming names.)  I told her that I haven’t had a pain-free day in 14 weeks (since my first surgery).  My intention was to convey the fact that when one’s been in pain that continuously, one’s pain-tolerance may drop.  My dad had a different interpretation – one which never occurred to me: that I’ve been on pain meds every day for the last 14 weeks.  Which I have actually.

What she did not seem to hear and/or take into account is that what pain meds I’ve been taking have changed with my needs over that time.  The highest I was taking was Norco 10 (10 mg hydrocodone/325 mg acetaminophen) right after my 2nd surgery – for about a week or so.  Then something miraculous happened…I stopped taking it because I didn’t need that much pain relief anymore!  :-O  Oh my gosh, I have the ability to self-regulate my intake of pain meds according to actual need – just like a real non-addicted adult!  Can you imagine such a thing?  As it happens, when I first started radiation, I was down to two Aleves twice a day and that was doing the deal.

But let’s be real – the object of my radiation treatment is to destroy cells.  Sorry, well actually I’m not sorry if that makes some people uncomfortable, using those words.  I’ve left my sugar-coating this stuff behind a while ago.  The object of the treatment is to cause damage (a measured amount, more or less, to be sure, but still damage) in my body.  Causing damage to the human body nearly always results in pain.  This treatment causes skin damage – irritated skin can be painful.  This treatment causes swelling in the radiated area.  Swollen tissue presses on nerves – often causing pain.

It is not nearly in the neighborhood of crazy that I should be experiencing pain (increasing pain, as more deliberate and intended damage is done to my body over the course of the treatments), and desire some relief from that pain.  Also, I have recent experience with some pain relievers, and you know that disclaimer they put on narcotic Rx’s: “May cause drowsiness – Take care while driving or operating machinery until you know this medication affects you?”  Guess what, I actually know how these medications affect me, from recent, personal experience!  I actually know I can function, work and drive on 2.5mg hydrocodone.  It’s when I take 5mg that things get a little weirder.

The funny thing is this: I realized that the very fact that she is treating me like an addict (by doling out the bare amount needed to get me through to our next scheduled visit on the amount I’m telling her I’m taking now – not thinking that my pain may increase with more treatments – two more to go this week – and if I have to take more than we planned on, I’ll be stranded right in the middle of a 4-day streak when I can’t easily get to her – nice) – is actually making me act like one!  In order to get my needs met, I’m gonna get my pain meds from another doctor (because I don’t need to have this begging, bullshit conversation every week until the end of my radiation therapy)!  So, because she assumes I’m an addict and therefore is treating me like one, I am actually displaying doctor-jumping drug-seeking behavior…too fucking funny!

Of course, it’s not really funny, because that was one prong of a two-pronged visit wherein Dr. Sanghani completely lost my respect and trust.  She has now given me the strong impression that she really does not care what happens to me after she’s done with me.  And that’s fine, for her.  Not so much for me, since I actually get to live in my body (hopefully for another 40-50 years – yep, not a typo – if this treatment business does its job).  Part of that for me is what the girls look like and how I feel about them specifically, and me generally.

To that end, my RSurg has recommended against me getting a boost because it causes more damage, that she will be having to fix.  But Dr. Sanghani is focused on (and Only on) eradicating the cancer as best she knows how – side effects, temporary and permanent, be damned.  Don’t get me wrong, I want the cancer to be completely gone.  I”m not stupid, and I get what this is about.

And…

I also expect 40 more years of living after this treatment course is over.  I’m currently 46 years old.  That means I expect to live almost as long as I have already been here.  That’s a Long Time to deal with physical defects that could be avoided.  And, if I don’t come out of the other side of this feeling good about myself, healthy And sexy, then really, that’s not a successful outcome – it’s the classic quantity vs. quality of life question.  I want both.  Am I greedy?  Yes.  But wouldn’t you be too in my situation, if you thought you could have both?

So my problem with Dr. Sanghani is that the quality of life issue is not at all important to her.  She doesn’t have the same overall gameplan for my recovery as a complete person that I do.  She’s too focused on the tumor and/or the disease and forgets both of those are attached to an actual human being.

Whereas, my RSurg sees my outcome as a whole person.  She has been involved with this since almost the beginning – certainly before my first surgery.  Her opinion has been dismissed by other saying “of course she cares about how you look when this is done – she’s a plastic surgeon.”  What they don’t know is that that perspective comes from an understanding of breast cancer recovery as a unique blend of mind, body and soul, in a different way than almost any other cancer because of the physical disfigurement attendant to it.

Why do I believe she has my best interests at heart and I don’t trust Dr. Sanghani?  When I met my RSurg, it was the very first time since my diagnosis almost a month before, that I actually felt calm – I could take a deep breath.  I have re-experienced that ‘safe haven’ moment in each of my subsequent visits with her.

I knew also that she had pioneered a one-step mastectomy/implant procedure for breast cancer patients.  She is experienced not just with cosmetic procedures, but with reconstruction after cancer.  She called me (as did my CSurg seprately) to explain why she was not comfortable with and therefore could not do my reconstruction at the same time as my excision surgery – namely that if my CSurg did Not get clean margins the first time and my RSurg had already used my own tissue to do the repair, then my CSurg would have to go in and re-excavate the tumor bed in order to Get clean margins, thereby wasting all of my own adjacent tissue (it would have to be removed along with more edges of the tumor bed) and that tissue would be forever gone for reconstructive purposes.

Why is reconstruction such a big deal for me?  Please see “A Lesson in Volume.”  Let’s take a divet this size out of the front of your body and see what you think, eh?

Anyway, this made sense to me.  I understood it.  Although I would rather have had only one surgery (that would have been ideal, wouldn’t it?), I went into it accepting that I would have two or three (if my CSurg did not get clean margins the first time) and that I couldn’t even Schedule reconstruction until pathology on the tissue confirmed clean margins.  And I accepted it because I Trusted that both my CSurg and my RSurg had my best possible outcome – physically, mentally And emotionally – in mind when charting my treatment.  I trusted (and still trust) this about them because they had instilled this trust in me by how they interact (still) with me.  Dr. Sanghani hasn’t really done this in the same way – my calm last week was (apparently) a temporary reduction of defending myself against doctors who mistakenly think their relationship is about them and not about the patient.  <shakes head>

Side Effects:

– pain – more of it every week.  These days it can hit anywhere from the left side of my sternum where my ribs attach, all the way to past the midline of my body under my arm – and from almost up by my collarbone down to the inframammary fold – including my chest wall under Lefty and Lefty itself being just generally tender.  Lovely.

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Radiation Therapy Journal – Day 11 – Monday November 12, 2012

Treatment Notes:

– not much to report – kinda in-zap-warm-out

Dr. Visit:

– She’s very encouraging, says we’re two weeks down, we’ll get through this.  She’s a good listener, says the red bumps in my axilla are likely foliculitis (inflammation of the hair follicles), another not-unexpected-side-effect of the radiation (except to me since this is the first I’ve heard of it, of course).  We have a good visit, my skin is holding up okay,and we’ll keep on keeping on for now…and then as I’m leaving (‘cuz I hafta get up to the 2nd floor for PTher) I see her making her visit notes “Pt is doing fair . . .”  So I decided tomorrow I’m gonna get all my progress notes and see what my docs Really think.  I’m actually okay with her taking an encouraging stance while maybe being more strictly realistic in the notes – I feel heard, and I feel like my side effects are being adequately managed so far.

Chaplain Visit:

– I’m sitting with Mom waiting for the treatment to start (she comes on Mondays to make sure I don’t miss something in my doctor visits that I need to hear), and the Chaplain over to meet me.  I, politely, tell him that I can’t see him today because I have my weekly doctor visit today and have to be upstairs for PTher by 8:30am.  Maybe tomorrow?  He hands me his card, and says maybe when I’m at home we can talk by phone.  Facepalm!  I’m tired of having this conversation, you know, the one where I tell him I work full-time?  Yeah, I managed to do that politely, then walked away to have my treatment.  So we’ll see if I see him tomorrow.

Side Effects:

– well, let’s start with fatigue.  Of course, I didn’t feel rested waking up this morning, and I’ve had RTher, a doctor’s visit And PTher Before getting to work at 9:30am.  So basically it felt like I had a full day before starting my workday.  Good times.

– the pain is changing, it’s not so focused anymore near the hematoma or the nipple, and less sharp – it’s more achy, tenderness and is occurring less frequently (making me think of ice packs in my bra less) and more like when I mistakenly tried to carry a heavy bag of groceries high up and close to my body (to make life easier on my back) and ended smashing Lefty – yeah that wasn’t so much fun.

– still lightheadedness/is it nausea or not, I can’t tell – at unpredictable, non-patterned times.

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