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

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

Treatment Notes:

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

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

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

Side Effects:

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

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

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

Radiation Therapy Journal – Day 3 – Wednesday October 31, 2012

Slightly less freaked out after Not being poked/fought with for two whole days.  We’ll see what the doc has to say about my stomach issues – took anti-nausea meds on the way to RTher this morning.

When I came in to the suite this morning I asked the waiting room receptionist to let my ROnc know that I wanted to see her this morning after my treatment.

Treatment Notes:

– didn’t really notice any sensation today

Doctor’s Appointment:

– I’m glad to see my, yes admittedly combative, attitude yesterday did not put off my new doc.  I brought up the concern about nausea and stomach pain leading to real permanent damage.  She could have pulled the “I’m a doctor, just trust me, it’ll be fine” crap, but she didn’t.  She said she didn’t do my radiation plan (she didn’t, the asshole did), so she brought it up on the computer, showing me where it was and where my stomach was and that they did Not overlap.  She actually showed me medical evidence for what she was saying, thereby buying actual credibility with me.  Only then did she opine that my stomach problems may be a result of my anxiety.  Hm, okay, I was certainly open to that possibility (I was under no illusions that I was no more than an inch below the ceiling, and had been at least that tightly wound for almost two weeks), so let’s treat that with an anti-anxiety med – script 1.  This will also help me sleep, which will help reduce the anxiety, which will help me sleep, and so on.

– And, by the way , I was Not told that I would be swelling would be this bad, or this early – I mean even before today’s treatment!  I’m talking at least a half cup, maybe a full cup, and all the way around to the side of my body and up into my axilla.  Swelling causes pain that is breaking through the two Aleves I have on board 24 hours a day, so is this normal?  Why haven’t I heard about this happening so much and so soon?  So, no, it’s unusual to happen so soon, but it’s not unheard of.  Great.  Okay, so let’s further help me sleep by seeing if I can Not wake up in pain, so let’s treat that with a pain med – script 2.

Side Effects:

– No nausea or stomach pain today, that’s a step in the right direction

– breast pain: ice pack used three times – twice on the hematoma lateral to the nipple, and once on the nipple itself.  One time it felt so good in there I almost forgot to take it out after 15 minutes.  Time to start using a timer on that deal again.

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

Radiation Therapy Journal – Day 2 – Tuesday October 30, 2012

Generally pretty freaked out still.  Meeting my new ROnc for the first time.  We’ll see how it goes.

Treatment Notes:

– slight feeling of warmth when they did the up-from-under angle

Doctor’s Appointment:

– I’ll admit it, I came in swinging my sword, so to speak.  I was not about to give her a chance to be like the first doctor I’d seen in that office.  It wasn’t just me establishing dominance though, I was still honestly anxious about the whole deal and needed her to know that (as if I could hide it, ha).  It was a kind of a crappy way to get to know a new doctor, but it was what it was.  I told her that I could not wait 15 minutes each week after my treatment to see her because I had to be at work in a nearby city by 9:00am – yes, every weekday.  She unfortunately gave me the “I have a lot of patients and I try to see everybody as soon after their therapy as possible.”  Okay, realistically I know there are other people in the world.  Absolutely.  But, unless some of those other patients are going to go work my work day, or pay my bills…what?  They don’t care about me?  They have their own lives and shit to worry about?  Right.  Absolutely.  Me too.  I prefaced my next comment by saying I hoped she understood how I said this, but “I don’t care about your other patients.  I have to manage my life first.”  Told doc about yesterday’s nausea and she gave me a script for anti-nausea meds.

Side Effects:

– so yesterday’s nausea has today turned into today’s actual stomach pain, just like when my GERD is out of control.  So this makes me wonder exactly where they’re radiating that I’m having such stomach problems.  And I’m going to have to see the doc again tomorrow (I was told I could see a doc any day I needed to, but no Less often than once a week during radiation), because a few months of this (side effects, so I’m told, can last from 3 weeks to a couple of months After the end of treatment as your body catches back up to the damage that’s been done to it) is one thing, 40 years of it from permanent damage done is something we need to talk about.  So back to the doc again tomorrow.

– breast pain: wow, it’s been a bunch of weeks since I thought about putting an ice pack in my bra, and I’m back to that – two separate times.

Radiation Therapy Journal – Day 1 – Monday October 29, 2012

Treatment Notes:

– slight feeling of warmth when they did the up-from-under angle

Side Effects:

– nausea after treatment – Really?  I hadn’t heard much about nausea as a side effect of radiation therapy, and certainly not after One treatment – this is gonna be fun!

SNL (1975-1980, 1985-Present): October 27-28, 2012

Who gets the reference?

This has been a rough one – again.

[Friday Night:

– took phone call from Dr. Rex Hoffman while standing in Costco, thereby ruining the upcoming weekend, which had looked promising after the catharsis of sending the email Thursday night, and was now a total loss
– emailed MOnc requesting a phone call this weekend]

Saturday:

– coffee
– took call from MOnc re how to handle Dr. Rex Hoffman issue
– trip to Oak Glen, CA with Hubby [See “General Gratitude – For Small Things That Help Me Get Through A Day“]

Our shopping list:
– peach fruit-only preserves/sourdough bread at Mom’s Country Orchards
– Apple Blossom Honey (in place of the Buckwheat I was looking for – Buckwheat only available from April to July – except for the Buckwheat honey I bought in October 2012 <shrug>]
– apple turnovers from Apple Annie’s Restaurant & Bakery
– jewelry from That Jewelry Lady
-pulled pork sandwich and Jonagold ice cream (made on the spot!) for lunch in the courtyard at Snow-Line Orchard
– apples, granola, apple wedger, cider, apple cider mini donuts and apple cinnamon bread from inside Snow-Line Orchard

– dinner on the way home with Hubby at Maria’s
– quick stop at the market for a few basics
– unpacked the truck of our ‘haul’ onto the kitchen counter [I figure Sunday is time enough to divide up, freeze, put away, etc.]

Sunday:

– coffee
– blogging
– sharing on FB [Different content on each platform]
– brunch @ home out of the freezer with Hubby
– more blogging & sharing on FB
– packed apple gift bags for Mom, Dad & someone at Hubby’s work, plus packed up granola bought in Oak Glen for someone I work with
– dinner & Phillip Island MotoGP on tvC

Schedule: Week of October 22-26, 2012

Monday:

7:00am-8:00am Drive from Home to ROnc
8:20am-9:10am CT Simulation for Radiation Therapy, including getting tattoos
9:10am-915am Drive from ROnc to Starbucks to get coffee
9:25am-9:40am Drive from Starbucks to Work
9:40am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by medical appointments]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Tuesday:

8:05am-9:15am Drive from Home to Work [With 1 stop to get gas for the car]
9:15am-1:00pm Work
1:00pm-2:00pm Lunch [Shopping at H&M – got a few good lightweight t-shirts for winter layering & 1 scarf] [Oh, and the first time I’ve taken an hour for lunch maybe since I came back to work after my surgeries on September 10, 2012.]
2:00pm-5:30pm Work
5:30pm-6:50pm Drive from Work to Support Group [Jack in the Box dinner & Starbucks coffee in the car on the way]
7:00pm-8:30pm Attend Support Group
8:30pm-9:10pm Drive from Support Group to Home

Wednesday:

8:25am-9:25am Drive from Home to Work [I actually made a conscious decision this morning to accept being late to work so I could clean up my bedroom (clothes needed putting away, my bag needed to be fully unpacked from my overnight stay at Mom’s last week) – to take some time all for myself to do something I wanted to do, even if I could only steal a few minutes.]
9:00am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by a few minutes of ‘me time’ this morning]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Thursday:

7:10am-8:20am Drive from Home to Physical Therapy [Why can I not get my ass out of the house on time to make it to physical therapy on time?]
8:20am-9:00am Physical Therapy
9:00am-9:20am Drive from Physical Therapy to Work [Driving through Jack in the Box on the way to pick up a Platter for breakfast – OK, I’m aware I’ve now gotten fast food twice already this week, and it’s only midday Thursday.  Apparently, I’m wearing down a bit this week (well, no wonder, see “Dr. Rex Hoffman – Office Visit – October 22, 2012“) and putting healthy food in my face is something that is suffering for it.  Hopefully, I can find some energy somewhere to fix that.]
9:20am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by medical appointments]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Friday:

8:10am-9:15am Drive from Work to Home [With 1 stop @ Starbucks for the weekly coffee treat – don’t tell anybody it’s my third Starbucks this week!]
9:15am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by medical appointments]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Costco
6:30pm-7:15pm Shopping at Costco [Including a 2nd phone call from Dr. Rex Hoffman which, after starting to feel better after posting last night and therefore looking forward to an actually relaxing weekend unlike the last one, ruined this one too, See “Dr. Rex Hoffman – Phone Call – October 26, 2012”]
7:15pm-7:30pm Drive from Costco to Home

Additional Tasks Accomplished This Week:

– walked at least 20 minutes each day
– blogged
– managed to carve out a whole hour for lunch at least one day
– used my hasn’t-happened-in-several-months one-hour lunch to practice some minor retail therapy
– cleaned up the bedroom
– wrote a scathingly honest email to Dr. Raul Mena, Medical Director of Cancer Services at Disney Family Cancer Center at Providence St. Joseph Hospital in Burbank [Hm, after going anonymously under the radar and promising pseudonyms, I’m blatantly and completely naming names all of a sudden – Please See Rule -1 and Rule 0 and “Dr. Rex Hoffman – Office Visit – October 22, 2012“]
– remembered to write & leave a check for our every-other-week housecleaners

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.

My New Ink – The Tattoo I Never Wanted

Tomorrow I’m getting at least six tattoos.  I’ve never wanted even one.

This has been all I could think about since Friday night when I got home from work and my mind shifted gears from workweek to weekend.

I have numerous piercings – multiples on each ear, and one in my navel.  I’ve always been okay with piercings because I figured if I ever got tired of them, I could take them out and they’d close up and disappear.  Realistically, I’ve had some of mine for so long now, I could take my jewelry out today and they’d never close up as long as I live.

Still, I could see where a small hole (or even more than one) could easily be overlooked by a casual glance.

Tattoos are something else entirely.  For all intents and purposes, permanent – forever – no changing your mind down the road.

Now, don’t get me wrong.  I am not globally anti-tattoo.  In fact, I find some tattoos, in some places on the body, on some people, very sexy.  I’m talking drop trou in the middle of a busy street at high noon sexy.

So if you’re getting an anti-tattoo vibe here, it is solely about Tattoos and Me, nobody else.  My generally applicable and very strong pro-choice stance extends to tattoos as well.

But I got breast cancer.  And the size and type of my cancer allowed me to choose lumpectomy with radiation therapy instead of forcing me into losing my entire breast (or both of them) by mastectomy.  So next up in my treatment program is radiation therapy, which requires tattoos.

The tattoos are there for a couple of very important reasons.

During therapy, mainly to make sure the therapy is delivered as close to identically each day (five days a week for 6-1/2 weeks, mind you), to simultaneously kill any remaining cancer cells in the area of the former tumor, and to spare as much healthy tissue as possible.

After therapy, they serve both as a roadmap to your prior treatment (should recurrence occur, or you change doctors, for example), and to mark off what I’m calling a future “no-fly zone.”  After some casual internet surfing it seems to me that tissue is really only supposed to undergo radiation therapy once, so even if recurrence happens in the same area, the tattoos mark out the ‘no more radiation here please’ territory.

I have been repeatedly assured that these tattoos will be small –  more (if applied by a women) or less (if applied by a man) the size of the head of a pin, or about 1mm (or so I’ve heard from a casual survey of the unbelievable number of women in my extended sphere of friends and acquaintances who have already fought the fight I’m in now – I Never knew how many people in my life had been through this deal until I entered it myself).

Still – permanent, never wanted one.  Fucking Cancer!

Since they are (theoretically and ideally) very small, I suppose I could actually have them removed, or skin-color tattooed over when my radiation therapy is done.  But anytime I’ve seen this on the net (on reliable websites), it comes with a clear warning to carefully discuss this your MOnc before having them disappeared, for the “after therapy” reasons spelled out above, of course.

So, as of today (Please See Rule # -1), I plan to keep my radiation therapy tattoos.  Goddamn Big Girl Panties!

Having resigned myself to getting and keeping tattoos I’ve never wanted wasn’t doing the trick.  I was still feeling pissed off and unable to wipe this tattoo thing from front and center in my mind.

So, what is a girl to do?  Go get a tattoo.

Wait, what?  Sounds crazy, right?

Well, not in the world according to me.  Here’s how things stand from my POV.  Never wanted a tattoo.  Got cancer.  Cancer treatments require tattoos.  Technically, I have a choice about doing treatment (getting tattoos) or not, I suppose.  Realistically, I don’t have a choice (See “I’ll Take Red Please“).

I do, however, have an actual choice about whether to get a non-cancer-related tattoo or not.  For all intents and purposes, there are really no consequences if I do or don’t (as long as I choose type, size and location wisely).

I could not let go of being pissed fucking off about cancer forcing me to get my first tattoo.  When I “acted as if” the cancer tattoos were Not actually my first one, my mind and heart calmed.

So today I went and got my first tattoo.  Here’s my new ink:

Um, yeah, that’s right.  There’s no picture to show.  I went to a tattoo shop in town that was recommended to me by someone I trust.  I was told to see the owner – Dave.  Unfortunately it appears Dave is on a tattoo hiatus.  I asked my friend if he would trust my body to Molly and he said yes.

It just so happens that on this particular day, there was a once-a-year festival being held on the street directly in front of the tattoo shop.  We made it in there, but the festival crowd was generally not the same demographic as the folks who get tattoos.

Maybe that’s why Molly seemed entirely uninterested in getting me what I wanted, or in the reasons I was doing this.  Maybe she just didn’t care, period.  In any case, I Do realize this is a permanent deal and chose not to do it somewhere and with someone I am not comfortable.

My first thought about this not working out as I had planned was – well, please see Rule # 0.  So I just figured when I got the “on purpose” tattoo (vs. the “they’re required for treatment” tattoos), I’d just warp time and Decide it was my first tattoo.  Hubby said, yeah, I could do that.  I can construct this blog/site world anyway I want to.  It’s all mine.  He also said I could just have the “on purpose” one be the one I wanted, as opposed to the ones I don’t.

We’ll see what I decide to do (or not do).  As of this moment, I have five new tattoos (it just so happens I have a freckle/mole just where one of my tattoos was going to be, so I didn’t have to get that one – who knew?), and this morning was just as hard as I was afraid it was going to be.  Since then, I’ve cycled back to crying about every 20 minutes or so.  And even finding a private corner to let the bawl out isn’t materially helping.

Remember that roller coaster analogy?  Seems to me like today is one of those down days.

SNL (1975-1980, 1985-Present): October 20-21, 2012

Who gets the reference?

This has been a rough one.  As soon as I got home from work on Friday, and mentally left this past workweek behind me, there was only one thing I could see ahead – Monday and the tattoos I’d have to get for my radiation therapy.  I’ve never wanted a tattoo.  Please see “My New Ink – The Tattoo I Never Wanted.”

Saturday:

– coffee
– was interviewed by S (with interview trainee L observing) as part of the Mya Research Project being conducted by UCLA to help tailor future resources to better meet women’s emotional needs in the first year after diagnosis – for those who come after me.
– blogging
– reading
– watching TV
dinner

Sunday:

– coffee
– blogging
– thinking about tattoos
– brunch @ Thelma’s Morning Cafe
– errands [vape store, tattoo shop]
– coffee from Starbucks
– dinner & Sepang, Malaysia Moto2 on tv

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