Tag Archives: Disney Family Cancer Center

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Schedule: Week of December 3-7, 2012

Monday [Radiation Therapy – Day 24]:

7:00am-8:45am Drive from Home to RTher

storm track

[Yes, it took me one hour and 45 minutes to get to RTher this morning.  Yes, the streets were wet.  Three accidents happened along my route After I left my house.  No, this is not reasonable.  Yes, this is the worst traffic has been in this recent series of 3 storms coming through Southern Cali.

And no, that image above isn’t from this past weekend’s storms, but it is of a storm track in the right part of the country, so I’m using it.  You must know by now how much I like my graphics and reference treasure hunts, no?]

8:45am-10:15am RTher, Appt with ROnc

[Yes, those two things took me an hour and a half today, but since I was late I did not feel like I could hurry anybody else up – I may sometimes be a bitch, but I try not to be unreasonable (they are Not the same thing).  I had PTher scheduled for 9:00am-10:00am this morning, but when I figured out I wouldn’t be getting to my first appt of the morning Anywhere near on time, I called and cancelled my PTher, asking them to change it to Wednesday.  Thankfully, they were willing and able to move another patient (thank you for your flexibility, whoever you are) and get me in on Wed at 9:00am.  I haven’t seen my PTher in two weeks now, and if I couldn’t see her this week, my next appt  with her is Wednesday December 19th – two weeks from now – which would have been four weeks between visits with her.  Now, I would have figured something out, or made alternate plans for treatment somehow, but since I am having swelling issues, it’s nice that I Don’t Have to figure my way around that.  :)]

10:15am-10:30am Drive to Work

[With 1 stop to put gas in the car]

10:30am-1:30pm Work
1:30pm-2:15pm Lunch

[I’m back to shorties to make up that 1-1/2 hrs work time I’m down on “first thing” Monday morning.

joanns-fabric

Headed over to my nearest Joann’s (found out this store is closing January 24, 2013 – I’m not so happy about this – it was, well still is, but not for very much longer, a close stop for lunch-time craft supplies shopping) to pick up some materials for decorating my teeny tiny punkins (two of them, ‘cuz one got taken home with the intention of being decorated and never made it back to my ledge at work, but magically another one showed up there to take its place!) to help them transition from Halloween, when they first appeared, to the end-of-the-year Holidays.  I may publish a separate post about that with pics and I’ll update this one with the title if I do that.  Or maybe not.]

2:15pm-5:30pm Work
5:30pm-5:45pm Drive from Work to Acupuncture
5:55pm-7:00pm Acupuncture

[This is my last visit with Mo, who I really like!  😦  She has finished her internship now and is headed on to study for her licensing exam at the end of February.  It takes a month or so for results to come back and then a couple weeks for licenses to arrive, so the earliest I could have her again would be sometime next April.  She did say she likes her supervising doctor at our facility and might explore working with him when she gets her license so she may be back where it’s very convenient to me.  She has my email and says she’ll keep me updated on that plan, and I have her email so I can bug her about it if she doesn’t!  And I’m sure whoever else I get for my last Acupuncture treatment of the year in two weeks will be good too.]

7:00pm-8:05pm Drive from Acupuncture to Home

[With 2 stops: 1 at the pharmacy to drop off my new Rx for pain meds (babe-seems-to-think-I-am-an-addict – otherwise known as my ROnc – actually refilled my pain meds today.  Maybe she realized I’m still taking the same amount as I have been the last two weeks to manage my pain and not more, and maybe this was part of her conversation with my RSurg last week.  In any case, she gave me twice as much this time as last time, so I don’t have to have this conversation again with her next week or the week after.  Thank the Goddess for small favors.) and 1 stop to pick up dinner for me & Hubby (no officer, that wasn’t me texting while driving – thank you Siri): two patty melts and an order of fries to share from Everest!]

Tuesday [Radiation Therapy – Day 25]:

7:10am-8:05am Drive from Home to RTher
8:10am-8:25am RTher, Post-RTher ablutions (otherwise known in my world as boob-gooping)
8:25am-8:35am Drive from RTher to Work
8:35am-1:30pm Work
1:30pm-2:00pm Lunch

200px-Whole_Foods_Market_logo.svg

[One of the things that has (temporarily) gone by the wayside is bringing breffast & lunch to work with me – are you reading this post, have you seen my life lately? – but the clothes are getting a tad snug (‘course that could be the monthly tide business – things crested this past Sunday) and it’s just good practice to eat clean, so headed off to Whole Foods for a salad bar lunch, with some organic (WA state, but you can’t have everything; where would you put it?) Ambrosia apples (didn’t get any in Oak Glen this year, so picked up a couple), and organic Bartlett pears (just because they were there and I could), plus 4 more bags of cranberries for more cranberry sauce before I can’t find them anymore.]

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

[With 1 stop to pick up pain meds]

Wednesday [Radiation Therapy – Day 26]:

7:00am-8:15am Drive from Home to RTher
8:15am-8:30am RTher
8:30am-9:00am Killing time between RTher and PTher

[Walked down to the end of the block to the Local 80 of a major entertainment union – there’s a locational bread crumb if it makes any sense to you – to get myself a coffee since traffic this morning wouldn’t nearly let me stop on the way in to get one, and discovered that a one long block walk decided to make my legs tired.  Not liking that at all!  Struggling between trying to get some exercise to limit how much this all takes out of me before it’s over, and saving what energy I do have to do what needs doing.]

9:00am-10:00am PTher
10:00am-10:45am Drive from PTher to Egg Plantation

egg plantation

[Because, goddamn it, I was finally going to have my pancakes!  Of course there was plenty of protein first.  The eggs I had were so fresh and the yolks such a beautiful rich orangey color I had to ask my server where the place got their eggs from.  They looked so much like the eggs I get two canyons over from my house, I just knew they had to be some local, non-industrial place and sure enough the restaurant gets their eggs from a cage-free farm about 8 miles away (a different place than I get them, but same situation).

Seriously, there is Nothing on this earth like eating an egg you know was still in the hen no more than 2 days ago.  Just for contrast and information – most of the eggs we all find in our supermarkets are already at least 3 weeks old before we lift that carton out of the cooler – yes, it makes a big different in appearance and taste.]

10:45am-11:30am Brunch
11:30am-12:30pm Drive from Brunch to Home

[With 1 stop at Food for Less to pick up the apples for that 2nd tub of applesauce.  Ya know, at 10 lbs of apples per tub of applesauce, things aren’t cheap here, so I figured 98c per lb of apples was doable.  And I think the non-Oak-Glen applesauce will be the one going to work – let’s see if anybody notices.]

Afternoon:
– nap
– took call from RSurg

[Really needed to talk to her before agreeing to radiation boost.  Emailed her physician’s assistant last Monday asking for a call last week about this.  Didn’t get one.  Called PA again while at brunch this morning saying “um, running out of time here.”  Got a call from RSurg this afternoon.

Doctor’s really don’t get it with patients, or maybe I’m just that different from most other people.  RSurg told me that yes, this radiation therapy Could create a situation where I may not be able to have implants later if I decide I want them.  She told me something I did not want to hear, but she gave me an unequivocal straight answer when I asked her a direct question, trusting that I can understand it and handle it.

Then she told me what else we Can do about my appearance (using other methods) to get me to, or at least closer to what I (may) want to look like when this is all said and done, or later on in the future (since a history of breast cancer is sort of a get-insurance-to-pay-for-boob-surgery-forever card).

I wish more doctors would understand the “if you want me to listen to you, then you have to really listen to me first, and answer my damn questions” thing.

My RSurg actually made me a little more scared than I was before our talk about the damage this treatment that I need can do to my body, and at the same time reinforced my belief that she’ll be there to work with me to get me over/through/past it, and still be the me I want to be when I do.]

– called ROnc to tell her I would be doing the boost radiation next week
– called Mom to tell her RSurg had finally called me back (PA had passed on my request for a call to RSurg, but had not followed up to make sure the call had been made, and took responsibility for the delay in the call happening – she’s pretty damn awesome actually, so they get a pass on this one)
– waited downstairs for Hubby to get home from work

[Turns out Hubby had this kinda crazy idea – that we go out to dinner.  You see, he got home around 4:30ish (yeah, I know, blue-hair territory, but remember, I’m going to bed at blue-hair time these days, so what the hell, huh?) and figured though we sometimes go out on weekends, it’s usually brunch (okay, if you haven’t figured out I’ve got a serious thing about breakfast food, please stop reading here and don’t come back, you’re too stupid to be here, thank you) and maybe today it could be dinner for a change.

So we could sit for a few minutes for him to shift his thoughts from work to evening, and we could go out, have a mellow sit-down dinner (not necessarily fancy or expensive, just someplace we get dinner on a plate instead of in a paper bag), and be home by like 7pm, plenty of time for me to call the parents, do evening boob-gooping, take my evening pharma-cocktail and still make my blue-hair bedtime…cool!

We ended up at this place we’d never been to in 8 years of living in this valley: Margaritas.  Damn, why’d we wait so long to try this place?!  Just the highlights – very nice Tequila selection for a restaurant in a strip-mall (but that happens a lot in my valley – strip malls and restaurants therein) – custom-made margaritas by bartender/owner (we figured out the bartender had to be the owner about halfway through dinner) – wonderful delicate flavors in Every dish (nothing heavy or overpowering) – someone in the kitchen Really Loves shrimp (they were, and I don’t use this term lightly, seasoned and grilled to perfection).  Plus, I think we were the only people in the place who didn’t know everybody else in the place, but that will change.  We’ll be back, so eventually we’ll know everybody else too.]

– talked to “Dana” (my friend from radiation) on the phone for over an hour!

[It was Really nice to get more than a few minutes with her.  We could share a bit about our particular situations, which we hadn’t actually done at the treatment center – that’s kinda not something you really get into in the few minutes of gooping, or the “you’re finished for the day and now it’s my turn to lay down on the table” passing in the hallway that happens.

I was sad to hear her details (not going to share what they are, they’re not mine to share) – they scare me more than my own details.  All I can do is love her (yes, we just met, we’ve had essentially a couple of hours of actual time together and I love this woman – sometimes in life you meet someone you just click with automagically and instantly – she is one of those people for me and I think she feels the same about me) and keep her company on her journey as she will walk with me on mine, wherever those journeys go.]

– 11:00pm bedtime (I know, not precisely blue-hair territory)

[When we got home from dinner, I had that pleasant slight-food-coma thing going, figuring I’d slide right into a decent bedtime.  But after talking to “Dana,” I was wired.  From excitement about sharing with someone who Really Gets It, worry about her details?  Not sure why, but it took 2 Benadryls tonight (usually only takes 1) to get me to dreamland – that’s gonna make for a rough morning.]

Thursday (Radiation Therapy – Day 27):

7:15am-8:30am Drive from Home to RTher
8:30am-8:50am Wait for RTher

[Yeah, when I’m late, I lose my right to bitch at them about the time, so I was a good girl.]

8:50am-9:00am RTher
9:00am-9:15am Drive from RTher to Work
9:15am-1:30pm Work
1:30pm-2:00pm Lunch

[This shorty catches me up on work time this week (not including my Wed off) so I can have an hour lunch tomorrow, what Will I Do with all that time?]

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

Friday (Radiation Therapy – Day 28):

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

[With a quick stop at Starbucks for my regular Friday “treat” – wouldn’t have been late if I hadn’t stopped for this, but I’m no longer able to stress every morning about being there perfectly on time.  They take whoever’s there in order of appointment time, and they slot me in when I do arrive – this is Exactly why I took the 8am spot rather than cutting things razor-thin timewise by taking the 8:30 spot.  Unfortunately, I couldn’t find any Starbucks iTunes Freebies this morning so my work folks are outta luck on that this week.  Again, I can’t stress about that.

Uh-oh, I think that just became Rule #4: I Can’t Stress About That.]

8:15am-8:25am RTher
8:25am-8:30am Post-RTher Ablutions
8:30am-8:45am Visit with “Georgia”
8:45am-9:00am Drive from RTher to Work
9:00am-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:

– blogged
– put gas in the car
– laid in partial supplies for more cranberry sauce (still need fresh oranges, more nutmeg and I may be low on maple sugar)
– bought more apples for a second batch of applesauce – seriously, my work colleagues can go through near an entire tub with latkes, leaving not nearly enough to be used in other recipes, eaten over yogurt and cottage cheese, etc. – so another tub is in order
– uh, yep, looks like I’ll be cooking again this weekend, hm?

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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Schedule: Week of November 26-30, 2012

Monday [Radiation Therapy – Day 19]:

7:10am-7:55am Drive from Home to RTher
8:00am-810am RTher
8:15am-9:00am Appointment with ROnc
9:00am-9:30am Waiting for requested med records to be printed
9:30am-9:45am Making additional acupuncture appointments

[Going from only on non-support-group weeks to weekly, for now, at least while I’m still in radiation therapy, and while Mo is in her clinical rotation (before she graduates and the next class comes in).]

9:45am-10:00am Walked over to lab building across the street (Please see “Seriously, this Woman Knows Her Way Around a Vein – I’m Naming Names Again“) to get my lab results that should have been faxed to me last week.  Yep.
10:00am-10:15am Drive from Disney Family Cancer Center to Work

[With a drive through McDonalds

for junk 740 calorie breakfast (eggs, sausage, hashbrowns, biscuit) – really, there’s only so much one can shoehorn into a morning and still get anywhere near a full-day’s work done.]

10:15am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-5:45pmpm Drive from Work to Acupuncture
6:00pm-7:00pm Acupuncture
7:00pm-7:55pm Drive from Acupuncture to Home

Tuesday [Radiation Therapy – Day 20]:

7:15am-8:00am Drive from Home to RTher
8:00am-8:20am Wait for RTher
8:20am-8:25am RTher
8:25am-8:35am Slather boob goop/visit with “Dana”

[I had invited “Dana” to join me at Support Group, which is tonight, and then go to breffast tomorrow before going home to rest after we do our crazy crack-of-dawn cancer business, but…

… it seems her blood work yesterday is such that they didn’t do her chemo, and she’s been feeling like something’s going in her body just now, so she’s not really supposed to be around people until her blood counts recover – this all means that her immune system is compromised to a point where she needs to be Extra-Careful ’til things turn back around.

She told me she was disappointed and I am too.  Of course, timing may not have worked out tomorrow anyway with my new CT films, but I hadn’t had a chance to tell her about that.  She said she’d call and I reminded her that we both have the rest of our lives to get to know each other if we want, and we’d keep trying to just find some quiet time for us to hang together some.

Throw up a little prayer for my new friend, if ya feel like it?  Thanks.]

8:35am-9:00am Drive from RTher to Work

[With 1 stop to put gas in the car and buy lottery tickets.  Damn, if there was any time I could go for winning a lottery that would allow me to quit my job, if even just for a while, it’s now!]

9:00am-1:30pm Work
1:30pm-2:00pm Lunch

[Seems I’m back to shorties to make up work time missed for medical appts.]

2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Support Group
7:00pm-8:30pm Support Group
8:30pm-9:15pm Drive from Support Group to Home

[Yeah, sorry, you only get two days of this week.  Even with taking Wed off – this week was my first of 4 consecutive Wednesdays off – I’m getting  pretty tired.

It’s weird, the treatment really doesn’t feel like much – you can’t see it, smell it, or taste it – and yet it can lay you low.]

Additional Tasks Accomplished This Week:

– blogged
– wrote check for housecleaner who came the Monday after Thanksgiving instead of her regularly-scheduled day which landed on the day after Thanksgiving last week
– made it working Monday, Tuesday, Thursday and Friday
– bought lottery tickets for the first time in weeks (months?)

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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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!

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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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.

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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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.