Radiation Therapy Journal – Day 17 – Tuesday November 20, 2012

Treatment Notes:

– some odd pain this time during treatment – some at the spot where my ribs in the treatment zone attach to my sternum, and some in the fold of my left armpit – at two separate points in the five minutes it takes me every morning, but still – weird.

Side Effects:

– pain – less of it today. ¬†ūüôā ¬†I’m crediting Mo (acupuncturist) and Dr. Chu’s acupuncture pattern he calls “WTF,” which I got, with a pain relief “back” as they say in bar lingo. ¬†This is the second time (with Mo in particular, and with Dr. Chu’s WFT with a pain relief back) that I’ve had a better week, both on the energy and pain scales, after having their needles stuck in me for half an hour or so. ¬†I’ve currently been doing this every other week (alternating with Support Group weeks, so I’m doing something other than strictly required medical appoints, but only one, every week – I kinda figured that was all I could handle time- and energy-wise), but I may have to add this into every week (even though it would mean on Support Group weeks, I’d be doing something after work both Monday and Tuesday) if it has the positive effect I’ve now seen twice.

–¬†¬†more lightheadedness – this time as I was walking back to the elevator after coming back to work after a late lunch break. ¬†I ate a big breakfast and I had some lunch before I ran my errand. ¬†Ah well, how I feel these days is, sometimes, an hour by hour thing.

RTher

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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

РI laid myself down on the table this morning Without taking my dress down Рthey 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 Рnamely 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:

Рpain Рmore 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 Рand from almost up by my collarbone down to the inframammary fold Рincluding 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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Radiation Therapy Journal – Day 10 – Friday November 9, 2012

Treatment Notes:

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

– one of my guys loves Friday like I do – another one of my guys was looking forward to seeing my Mom on Monday

– waiting for my guys to test the machine this morning I met another patient in the girls waiting area (they’re segregated by gender – for patient privacy – which is a pretty good thing – lots of people are more modest and more freaked out about that stuff than me, and that’s fine too), “Dana” and we had a nice chat while waiting for our respective machines (I think she’s either the 8:00am or 8:15am slot on one of the other two machines in the place).

Side Effects:

– lightheadedness/dizziness, fatigue, nausea: at the end of my morning walk around my work block, just as I was getting back around to my building I got all three kinda at once. ¬†I had started to become worried that this journal was gonna get boring, but this cancer thing really is an hour-by-hour, day-by-day thing. ¬†Kinda like the weather in Hawaii – wait 5 minutes and it’ll change.

– yeah, so 11:00am, nearly on the dot, as I’m coming back from taking my morning walk around the block I ran out of gas. ¬†I guess I’m pretty done for the week.

– I know these twice a day short walks are good for me, on a number of levels, but today, they both seemed to just make me more tired than I was before. ¬†The afternoon one seems to be “hitting the wall #2” today alone.

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Radiation Therapy Journal – Day 9 – Thursday November 8, 2012

Treatment Notes:

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

Side Effects:

– lightheadedness/dizziness again: after doing my schmear the boob with all the healing stuff & apply deodorant, as I’m walking from the center to my car – tried some deep breathing for more oxygen, didn’t seem to help. ¬†Made it to the car okay and no concerns about driving, but weird…actually Did look this up on the ‘net yesterday and it seems not that uncommon – another thing nobody mentioned ahead of time, fun.

– Yeah, the lightheaded thing happened again today, on one of my work break walks around the block.

– a little more pain today, but not bad.

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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? ¬†ūüôā

– 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!

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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. ¬†ūüôā ¬†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! ¬†ūüôā

Рless pain than before, until about 3:30pm when it started up again, but still less throughout the evening РYep, the acupuncture again.  Maybe I should ask for this treatment combination again in two weeks.

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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! ¬†ūüôā

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. ¬†ūüôā ¬†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.

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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. ¬†ūüôā

– 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?

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