Tag Archives: Treatments

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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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Radiation Therapy Journal – Day 6 – Monday November 5, 2012

Treatment Notes:

– a weird cold burning in the lower lateral portion of the breast during the down-from-above portion

– a clean machine today!  🙂

Doctor’s Visit:

– clearly I’m doing some better after a weekend where nobody got in my face about anything (but I Do Not feel rested starting a new workweek) – when we were going over my side effects I’m having and the meds I’m taking to manage them, I told my ROnc I’m aware of and consciously managing my CNS depressants – therefore, taking Benadryl to sleep and Tylenol #3 for pain management (although I’m likely to be upping my use of that some because I’m still getting too frequent and severe breakthrough pain), but I’m saving my Ativan for the next time I want to drop-kick someone’s head.  🙂  There was laughter throughout the room and she thought that was a very good use of that particular medication.

– so it seems my nipple issues are normal, or in the doctor’s words nipple sensitivity is common.  Mm-hm, so my nipple getting hard for no good reason and thereby causing me pain is common, so glad to know that.  Despite my (ongoing) concerns, I must be gooping up enough and with the right stuff ‘cuz the boob is Not Yet lobstered.  Woohoo!

Side Effects:

– more frequent breakthrough pain up to almost a 5 on a scale of 1 to 10

– lightheadedness/shaking: I’m guessing this is from a blood sugar issue since all I could think of when this started was FOOD, FOOD, FOOD, and when I ate a big bowl of cereal with raisins and most of a large banana (then ate the rest of the banana), I started to feel better.  It seems that lumberjack appetite is still here (‘cuz I’m thinking of having a peanut butter sandwich too).

– fatigue: was yawning on my drive from RTher to Work, and at 11:00am I could easily lay down and close my eyes.

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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Radiation Therapy Journal – Day 5 – Friday November 2, 2012

Treatment Notes:

– a little warmth during the down-from-above portion

– Um, I’m going to assume it was Betadine, but there was something splashed on the arm of the machine that I could see behind the head of the machine during the down-from-above portion.  I brought it to the attention of one of my guys (RTech) when my treatment was done (it wasn’t anything that was going to touch me, so I didn’t feel the need to stop things in their tracks to have this dealt with, but did want them to know about it before they put another patient on the table), and they were cleaning it up before I’d even covered up enough to leave the room.  🙂

– Oh, and I told Iggy about my conversations last night (See Radiation Therapy Journal – Day 4 – Thursday November 2, 2012).  He thought it was pretty cool that I’d even ask.  And then I reminded him who we were all here for – to which he completely and heartily agreed.

Side Effects:

– freakin’ lumberjack appetite!  It could be because my hormones are waxing (I’ll let you know if this changes when they crest), but A) I haven’t been noticing any other PMS yet, and B) it would make sense as a side effect of radiation (another one I’ve not heard of – hello people, can I get some information here please?) since the object of the treatment is to, well, not to put too fine a point on it, to destroy my cells, and since this does not distinguish between healthy cells and cancer cells, they both ‘get it,’ so to speak.  So my body needing more fuel to try to heal the damage being done and rebuild my tissue makes sense to my fairly-medically-aware-but-not-an-actual-doctor brain (I was formerly licensed as an EMT and provided volunteer first-responder emergency care at local parades & festivals for a few years).

– pain at the incision on my nipple – this one is starting to worry me a bit.  While other things are coming and going with my mood, stress hormones level, girlie hormones level, sleeping or not sleeping, etc. – this one’s staying fairly constant.  This was Still tender when I started this new treatment – tender enough to be wearing a nursing pad in my bra t0 1) reduce chafing/make sure the softest possible surface was touching it, and 2) to fill out the cup to match the size of the other one (yeah, before I started any treatment at all, lefty was bigger and now righty’s already been surgically reduced once) – of course now that I’ve started radiation and lefty is swollen from damage…things are again reversed.  I’ll let you know if it gives way.

– fatigue – I was doing mostly okay and completely bonked at about 3:30pm.  I’ve forced myself to actually keep working, but please Goddess, when is 5:30pm already?

Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.

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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.

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Locks of Love – For Those Who Come After Me

A week before my first surgery, I went to get a haircut.  A serious haircut.

At that point my hair was pretty long, by anyone’s standards, very much like that of Lady Godiva.

I decided to cut it so as to make it easier to take care of after my surgeries (short enough to be washed leaning back into the sink if necessary).  I figured I’d cut off enough to donate to Locks of Love – two birds with one stone, don’t ya know? – for those who come after me.  I didn’t at that point know whether I’d need chemo and end up losing my hair or not, but either way I figured it was good karma and just the right thing to do.

Although I came out of there feeling bald (in the world according to me), I also was not going to let an inch or two keep me from donating since I was cutting most of my hair off anyway.  I had just enough to meet the length they needed and leave me with a just-longer-than-chin-length bob.  Okay, it met both of the criteria, and I knew it would grow back (I’ve always had lots of thick hair), and if I had to have chemo, lost my hair, and it grew back different (as more than rarely happens), well that was a bridge I didn’t even have to admit existed at that point, let alone deal with crossing.

The week between getting it cut and having my first surgery, I had posted for my friends on Facebook a picture of my cut-off ponytail with the caption “On it’s way to Locks of Love.”

Well, then the rest of the week was cleaning up the house, stocking the fridge, doing laundry, setting up the bedroom with what I thought I’d want while recovering and just plain continuing to breathe in and out to keep the anxiety level anywhere near reasonable.

And then there were two surgeries (two weeks apart to the day), follow-up appointments with both surgeons, getting my ass back to work, interviewing new doctors for the next stage of treatment, doing physical therapy for side effects from at least one of the surgeries, starting the next stage of treatment, and getting at least the bare minimum of chores done to keep my life running (food in the house, enough clean clothes to dress to leave the house every day, paying at least some of the bills).

Needless to say, today this ponytail was still on my desk in my home office.

TODAY IT IS GOING WHERE IT WAS INTENDED TO BE SENT THREE MONTHS AGO!  🙂

Here’s what’s going in the package:

And here’s the package all packed up, stamped and heading out to it’s destination!  🙂

Copyright Ridingthebcrollercoaster.com 2012 All rights Reserved.

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Weekly Writing Challenge – I Wish I Were…

. . . able to quit my job and be a full-time college student again.

Now, I doubt I’m pining for what you think I’m pining for.

Midway through my freshman year in college, the first love of my life died in a motorcycle accident.  I managed to stay in college another year before I realized I just couldn’t finish that just then in my life.  So I quit, became a baby nurse, and then a nanny, and after that, my life went another way.  The first part of my college “career” was pretty much the same as high school – cliques and not really feeling like I fit in – but with alcohol.  The second part is a blur, as I sleep-walked (is that a word?) through my life mostly (but not entirely – I’ve forgotten my roommate’s name, but will never forget the night she came into my room to find me crying in a heap on the floor, picked me up and held me until I stopped and when I finished, left the room, closing the door behind her – all without saying a single word) alone because people assumed at 17 years old I couldn’t possibly have loved my man as much as I did or been as affected by losing him as I actually was.  The truth is, his death changed the entire course of my life.

So, no, I’m not just wanting to throw off my adult responsibility to go back to some (for me, imagined) free time with no real responsibilities.

Over the last couple of years, I’ve taken the odd college class here and there – two online and one live and in person at a local community college.

I miss being able to focus on something (with a goal – somehow wandering around on the net isn’t quite as satisfying to me in the same way) that is so unlike my real life.  I’ll admit it, I’m bored with my work.  It requires a specialized knowledge base, and technology is infiltrating it too which is interesting for me to watch (being a bit of a tech geek), but I’ve been doing it for 14 years now (with a stint of something else tucked into the middle here and there).  In that time, any intrinsic pleasure I’ve gotten from it has long since faded away.

I will say that if I have to work, I’ve landed at a pretty great place to do it, so I am grateful for my employment, managers and colleagues.  It’s still not the same as wanting to come to work every day for the work itself.

I realize I’m making choices here, and I stand by them; that doesn’t mean I don’t wish some things were different.

Between a mortgage that’s upside down, a year or so of un/under-employment that ended about a year ago but we’re still digging out from, and being in primary breast cancer treatment which my budget did not have room to accommodate four months ago when I was diagnosed and still doesn’t have room for, I doubt (unless I win a big lottery) that my ‘wish’ will ever come true.

I was 38 years old when I bought my first house and survived keeping it despite Hubby having an accident 3 months (yes, not a typo) after moving in, breaking his back and having his own year-long healing hurdle to overcome, and despite being un/under-employed for a year quite recently.

When I was looking for work that would financially replace what had been lost, Hubby (last love of my life) wanted, more than anything, for me to find work that would make me happy.  He explicitly told me that he would be willing to change our housing situation to meet that goal, for which (among other reasons) I will love him always – but I wasn’t – I’d worked too hard to get it and keep it through one hardship already, so this is the choice I’ve made, and some days it’s harder to remember why I made it than others.  I do the best I can at this, and lots of other things, every day.

Bottom line – I wish I were able to quit my job to go be a full-time student, have that intellectual excitement and stimulation again and finish my degree . . . but not enough to give up my house.

I’ll have to keep looking for ways within the structure of my current life, or find something else I’m willing to change, to get that need met.

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.

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I’ll Take Red Please

My favorite color is Navy Blue (seen the background color of this blog, for instance?  Guess how I chose my theme.).  I was born in May, so my birthstone is Emerald.  But (other than diamonds, of course) my favorite gemstone is the Sapphire because . . . it is navy blue.

All of a sudden, about 3 months or so ago, I started wanting to wear a lot of red, literally all the time.  I was diagnosed on July 5, 2012 with Breast Cancer.

What does being diagnosed with breast cancer have to do with wearing red?

And why red, as opposed to any other color?

The Chinese culture contains the belief that the color red signifies: good luck, power, strength, long life, vitality, happiness, good fortune, joy, power to ward off evil spirits, energy, determination, vigor, willpower, courage, and triumph, among other things.

Don’t take my word for it.  This information is available all over the internet.  Here are just a few:

Nationsonline.org
Wikipedia.org
WeirdAsiaNews.com
BillionDollarIncome.com

Personally, with what I’m up against, I’ll take all of that stuff I can get.

When I said above that I wanted to wear red all the time, I meant 24 hours a day/7 days a week.  That meant I could put red jewelry a couple of places –

My navel (it was already pierced, so this was just a matter of hitting the nearest mall cart and buying the color I wanted, especially since I never take this completely out, only change them from time to time); and

My thumb – where I could simply look down, see the red and tap into that positive vibe anytime I wanted.

I decided, almost upon diagnosis, that this breast cancer thing was Not going to steamroll me.  Hence, I’ve been making trouble all over town.  🙂  But I digress.

Much of what I have to do to fight cancer is, essentially, out of my control.  Not doing it, or not doing some part of it, or not doing something like it, is simply not an option – not if I want the other 40 years my genes promise me (despite various cancers all over my family, my grandparents and great-grandparents on both sides have lived into their late-eighties and nineties with full mental faculties and most physical faculties – so that’s what I’ve grown up to expect I get too), and the alternative sucks.

To balance that feeling of being out of control, I take control and deliberately make decisions about cancer-related things where doing so does not put myself at medical risk, or is not otherwise unreasonable or stupid.  Notice that someone else’s convenience does not enter into my equation.  I do not visit Any of my medical professionals for their convenience, and I find myself often (politely, when I can) reminding them of that.  One thing I can control is what color gauze is used on me when necessary (which is fairly often given my extreme allergy to tape – yes, even Tegaderm), so I choose red.

I figure I’ll use everything I can to sway this fight in my direction, as long as it does not harm anyone.

The other thing I love about my red self-adherent gauze is I can wear it when I can’t wear any of my red jewelry, or in fact, any jewelry at all – when I have surgery.  And to make damn sure I get my red gauze, and to make it as easy on my caregivers as possible (so I prevent even the possibility of a conflict, since I have the means to do so), I bring my own.  I’ve had two surgeries already, and I may be having more on the other side of my radiation therapy.  So far, everybody’s been perfectly happy to use the gauze I bring, particularly after they ask me why red only, and I tell them.  It’s a win-win situation!  🙂  There are only those few minutes between taking All my jewelry off and having that first IV tied down with my red gauze that I don’t have any red on my body (well, except for my red toenail polish of course! – there’s always a way!), and by the time they do anything really serious, like make me unconscious or cut me open…I know I’m covered.

In fact, I’ve found a few items, in addition to red self-adherent gauze, that have so far made my journey easier.  As soon as I can source and price the components, I plan to offer a “You’ll Get Through This” Pack on a new page: “ToLiveWithByJ”