We all get to have our own relationship with our breasts.
Reposted January 14, 2013 re Writing Challenge: Starting Over.
I’m not a big New Year’s girl. Never really have been.
Yesterday I had a half day of work (they shut down extra early and sent us all home) and I came home to rest (see “What Looked Like ‘Better’ Turned Out to be PMS and a Full Moon“), which ended up being a late nap (about 4pm-6pm). I knew that would screw with my night’s sleep, but as quickly as I fell asleep after lying down, I apparently needed it. And I was off work today, so who cared if I was up half the night.
And I was. And then some.
After waking up and having separate dinner together with Hubby (we both kind of fended for ourselves according to personal taste at the moment but prepared and ate together – you can do that when there are no kids to feed), we both settled in to rest – me still from the radiation fatigue and him from some crazy long days at work last week and a relatively active weekend.
We were having nice quiet time separately in the house together and along about 11ish I checked on him – sound asleep in his room.
I went back to bed and finished the book I was reading.
The time was about 11:40pm.
I picked up a new book (which I have decided is my first book of 2013 . . . because I can) and started to read it.
It grabbed me right away, so I forgot about the time.
Then I heard noise from outside. It only took a nanosecond to realize what the noise signified.
I looked up from my book.
There I was, alone in bed, Hubby safely and peacefully sleeping in his room, a book in my hand, still hearing the year turn.
I took a moment to just be.
In a way, though it was near 15 hours ago, I feel like I’m still in that moment.
I could hear my neighbors fresh starts being shouted to the Universe, and thankfully I was not required to participate.
I felt something in that moment that is lurking still somewhere in my consciousness.
I don’t know what to call it.
I do not have the sense of transition that often comes with this night/day. I do not have the relief of leaving the year in the past or the societally-imposed hope for a better year upcoming – behind me are two surgeries and destruction (yes, it’s actually what the real goal of radiation treatment is, even if saying it that way makes some people uncomfortable) of my cells – ahead of me are more surgeries and chemical castration in the form of anti-hormonal medications leading to artificial, forced menopause.
I’m very glad that when I go to sleep tonight, this year’s official “Holiday Season” will be over. A few more days of being wished “Happy New Year” and facing the expectation that I display hope and joy in response to same, and then maybe I can breathe easier.
Being where I am in my cancer treatment, I have no realistic expectation that most of 2013 is going to be much better, easier or more fun than most of 2012 – that’s my reality.
I believe lots of people Do have that expected hopefulness and transition happening for them, and if you are one of them, I am truly glad for you – I just ask that you please not expect me to feel and display the same this year.
And before you try to buck me up, I’m okay with where I am just now. I’m trying to just sit with it until it shifts. And it will, in it’s own time.
Check with me a year from now, I may feel differently.
I went back to reading my book for a few more hours; I couldn’t put it down.
I finally took a 2nd Benadryl, which forced my eyes to close.
It was 4:00 am.
– some warmth during the up-from-under portion of today’s program, otherwise not much, kinda in-zap-out
– I laid myself down on the table this morning Without taking my dress down – they had to remind me (and they were so good about it too)! Oops!
– 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.
I also expect 40 more years of living after this treatment course is over. I’m currently 46 years old. That means I expect to live almost as long as I have already been here. That’s a Long Time to deal with physical defects that could be avoided. And, if I don’t come out of the other side of this feeling good about myself, healthy And sexy, then really, that’s not a successful outcome – it’s the classic quantity vs. quality of life question. I want both. Am I greedy? Yes. But wouldn’t you be too in my situation, if you thought you could have both?
So my problem with Dr. Sanghani is that the quality of life issue is not at all important to her. She doesn’t have the same overall gameplan for my recovery as a complete person that I do. She’s too focused on the tumor and/or the disease and forgets both of those are attached to an actual human being.
Whereas, my RSurg sees my outcome as a whole person. She has been involved with this since almost the beginning – certainly before my first surgery. Her opinion has been dismissed by other saying “of course she cares about how you look when this is done – she’s a plastic surgeon.” What they don’t know is that that perspective comes from an understanding of breast cancer recovery as a unique blend of mind, body and soul, in a different way than almost any other cancer because of the physical disfigurement attendant to it.
Why do I believe she has my best interests at heart and I don’t trust Dr. Sanghani? When I met my RSurg, it was the very first time since my diagnosis almost a month before, that I actually felt calm – I could take a deep breath. I have re-experienced that ‘safe haven’ moment in each of my subsequent visits with her.
I knew also that she had pioneered a one-step mastectomy/implant procedure for breast cancer patients. She is experienced not just with cosmetic procedures, but with reconstruction after cancer. She called me (as did my CSurg seprately) to explain why she was not comfortable with and therefore could not do my reconstruction at the same time as my excision surgery – namely that if my CSurg did Not get clean margins the first time and my RSurg had already used my own tissue to do the repair, then my CSurg would have to go in and re-excavate the tumor bed in order to Get clean margins, thereby wasting all of my own adjacent tissue (it would have to be removed along with more edges of the tumor bed) and that tissue would be forever gone for reconstructive purposes.
Why is reconstruction such a big deal for me? Please see “A Lesson in Volume.” Let’s take a divet this size out of the front of your body and see what you think, eh?
Anyway, this made sense to me. I understood it. Although I would rather have had only one surgery (that would have been ideal, wouldn’t it?), I went into it accepting that I would have two or three (if my CSurg did not get clean margins the first time) and that I couldn’t even Schedule reconstruction until pathology on the tissue confirmed clean margins. And I accepted it because I Trusted that both my CSurg and my RSurg had my best possible outcome – physically, mentally And emotionally – in mind when charting my treatment. I trusted (and still trust) this about them because they had instilled this trust in me by how they interact (still) with me. Dr. Sanghani hasn’t really done this in the same way – my calm last week was (apparently) a temporary reduction of defending myself against doctors who mistakenly think their relationship is about them and not about the patient. <shakes head>
– pain – more of it every week. These days it can hit anywhere from the left side of my sternum where my ribs attach, all the way to past the midline of my body under my arm – and from almost up by my collarbone down to the inframammary fold – including my chest wall under Lefty and Lefty itself being just generally tender. Lovely.
Copyright Ridingthebcrollercoaster.com 2012 All Rights Reserved.
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:
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”
Last week – After my hormones cycled – I realized I felt better. Now, whether Mom or Hubby or my work friends would say I feel better from what they’ve seen, I have no idea. I also was still so mentally, emotionally, and physically exhausted by Thursday night that I cried just from exhaustion.
And yet, I think I’m starting to feel better, at least temporarily [please do not lose sight of the title of this blog – that metaphor is used for many very good reasons], and when I say I feel better, it may not last long. In fact, by the time you read this, it may no longer be the case, but I’m sticking with it for now.
So why do I say that? Well, first – last week I made a joke – I mean a joke that was not dripping in bitterness or sarcasm (“Um, Bitter, Party of One?” – Shit, I resemble that remark). It’s a little thing, right? Wrong. It’s a big deal after not being able to joke at all, about anything, for so long! Hubby was in the middle of a story when I stuck my little joyful zinger in there and he continued on with his story until I stopped him and prompted him to acknowledge it. Some things need their own moment, ya know? Then, of course, I reminded him what he was saying and listened until he finished his story.
And then there are the following chicken/egg observations:
It has been six weeks last Monday, October 8, 2012 since my second surgery. I was told by my RSurg that I had a 10-pound lifting limit until six weeks after surgery. Now, six weeks is some maybe more, probably less arbitrary time period where a certain amount of healing has taken place, and well, I’ve hit that time point. My physical therapy has been going well, and although I still think about stretching, extended-type movements, I’m finding I have to ‘pull back’ less or not at all to avoid the pain that is disappearing from those actions.
Last week I started taking Benadryl to sleep. Sleeping without it just wasn’t happening, and everyone, to some degree or another, does worse when sleep-deprived: pain hurts more, concentration and focus disappear, tempers get short, food choices are harder to keep healthy, energy level drops, mood is more fragile, etc. – we all know the drill. I was taking 1/2 a Benadryl and upped it to a full 25mg tablet/capsule (keep in mind many people need 50mg or 100mg to get to sleep). I’ve found that if I give myself more time to sleep I have less of a hangover in the morning from it. And I’m starting to wake up feeling more rested too. Of course, that too, doesn’t last long.
[You know how when you’re getting better from being sick, one morning you wake up feeling good, but then you get out of bed and you don’t feel good anymore? And then the next day you wake up feeling good again and it lasts a couple of hours? And so forth, until finally you feel good all day and you realize you’re fully well? Keep that progression in mind, it applies here to many aspects of my current experience, but can also get set back to zero in a heartbeat – roller coaster, remember?]
PMS – Hormones:
A month ago I had a perfect storm of ‘things’ happening on a Thursday night. Just plain tired with it being Thursday and all, I was irritable due to (unbeknownst to me) it being the day before I realize I’m getting sick, And the hormones were raging (they would crest the following day). I was seesawing between anxiety at a level of 11 on a scale of 1 to 10, and bawling my eyes out and Not Feeling Any Better For It!
Well, normal service resumed and things crested again this past week, and I noticed in retrospect that while I did get somewhat testy (right Dad?) [But please do keep in mind on general principles that hormones can make things seem worse than they might otherwise seem, but they Do Not create anything out of nothing!], I was in no way as out of control as I was a month ago. Of course that could be due in part to…
1) Anti-Depressant – After last month’s meltdown (I told my family and my MOnc – when things calmed down some – that I had Never felt like that in my more than 4 or 5 years of experiencing this particular phenomena), I contacted my MOnc who authorized me to increase my dosage of this med. Of course, there is a break-in period anytime one changes dosage on this thing. So I think I finally got to equilibrium with that.
2) Pain Meds – Not sure how this thought occurred to me – prolly some combination of Mom making a suggestion that I try this, and realizing that I was waking up hurting as I turned over in bed – I began adding 1/2 an Ultracet to the evening Pharmaparty in my hand. That seemed to help, but I still was waking up hurting when I turned over, so I upped it to a full Ultracet and that (combined with a Benadryl) maybe is allowing me to get some restful sleep and wake up feeling more refreshed sometimes.
Meds Side Effects:
In a deliberate attempt to be obscure here so as to avoid the blatant oversharing label – let’s just say some of the side effects of some of the meds I’m taking seem to have mellowed some in the last week, and so I’m feeling physically slightly lighter. Moving on…
Yes, the title of this post is not a misprint. I’m feeling better And I’m having More pain. Weird, I know. As the swelling continues to SLOWLY recede, the places where it has been so severe that the tissue actually feels hard to the touch (on both sides, mind you) are getting noticeably smaller. Reminder: everything a double-edged sword – nothing all good or all bad. As the swelling recedes, the numbness begins to recede. As the numbness begins to recede, the first sensation reawakening nerves transmit is, you guessed it, pain.
As the swelling recedes, the shape of things changes, allowing some incisions – ahem, I won’t specify, but where is the most cosmetically friendly place to cut to remove something from one of the girls? – (and the sensitive, traumatized skin around them) to experience increased rubbing. Right.
Plus, after my biopsy, I experienced, in addition to pain in the boob itself, these odd, almost shooting-star-type pains in my abdomen – both front and back, far from any of the incisions at all. I’m having the joy of those again. 🙂 My MOnc warned me about them as a consequence of my two surgeries, not knowing I’d already experienced them in the aftermath of my biopsy procedure. They’re weird pains too –
– nothing specific brings them on or makes them better or worse
– they’re stabbing, cutting, shooting-star feeling things
– they are removed from any sensible cause like an incision or swelling
– they can be anywhere from 2-7 on a scale of 1-10
– they don’t last very long (my MOnc told me by the time I take something to treat them, they’ll already be gone – and I’ve already experienced that he’s right about this)
[Any medical professionals recognize P-Q-R-S-T?]
When I first got diagnosed and could not control the thoughts racing around in my head [See “A Tornado In My Head”], it was suggested to me more than once, by more than one person, that maybe just getting some of the thoughts out on paper would help settle things in my cranium. And indeed, I Know that works for me with chores and tasks type stuff. Once I get it out of my head into an app that will remind me when needed, I can let it go and move on to other things. But, for some reason, the idea of putting this down in some black hole (this was how a journal just for myself felt to me) didn’t seem like it was going to do the trick. And then I started this blog. Somehow, the fact that this is being sent out into the world feels like the ‘release’ I need (or at least a start thereof), and I’ve been doing this blogging thing about two weeks now, give or take.
I’ll leave it up to you to opine on why I’m reporting I’m feeling better:
– simply time passing
– getting more restful sleep
– having less PMS
– better meds balance
– less meds side effects
– more pain (I have no idea, I plead cancer brain)
– emotional release from blogging
– or some combination?
I’m open to your thoughts on the matter (though I reserve the right to veto them if they conflict with my reality) but I am curious to hear them…
The Volume of a Golf ball [According to the Rules of Golf (as approved by the United States Golf Association and the Rules Committee of the Royal and Ancient Golf Club of Saint Andrews) = 40.68 cubic cm.
The Volume of a Jumbo egg (according to the USDA – Chicken egg sizes) = 71 cubic cm or larger. [Large Egg on Left/Jumbo Egg on Right]
My Tumor (and Margins):
– Left Breast Mass: 5.5 x 5.0 x 2.8 cm = 77 cubic cm.
– Left Additional Deep Margin: 1.5 x 1.2 x 0.4 cm = 0.72 cubic cm.
– Left Additional Medial Margin: 1.5 x 1.2 x 0.4 cm = 0.72 cubic cm.
– Left Additional Inferior Margin: 2.0 x 1.1 x 0.4 cm = 0.88 cubic cm.
– Left Additional Lateral Margin: 2.0 x 1.5 x 0.4 cm = 1.2 cubic cm.
– Left Additional Superior Margin: 2.0 x 1.5 x 0.6 cm = 1.8 cubic cm.
– Left Additional Superficial Margin: 2.0 x 1.5 x 0.4 cm = 1.2 cubic cm.
The Volume of a hockey puck is approximately 113 cubic cm.
Total tissue removed (including margins) = 83.52 cubic cm = > 2 golf balls = > Jumbo Egg = 2/3 Hockey Puck.
Rule #1 – I work for a living.
So, I was out of the house at 7:30am this morning and got to work at 12 noon. What took so long? Traffic? Well, in this part of the world there could be an accident bad enough to cause the drive to work to take that long, but no. What else but a doctor’s appointment to interview (yes, I’m using that word consciously and deliberately) a radiation oncologist at NR Hospital.
Now, I knew this appointment was happening – I made the appointment myself, personally. When I made the appointment I deliberately asked them how long I should plan on being there. I was told an hour and a half. Because I am trying to reduce the effect this craziness has on my supportive employer unless I absolutely can’t work (like directly after having surgery), I’ve busted my ass to bank extra time this week to cover the time I would be late today, thinking I was being generous when I budgeted two hours (half an hour more than I was told today’s consulation would take) plus time for a reasonable drive to work.
This means between the other two medical events I’ve had this week and working longer days than usual to bank some time [and a family event last night I refused to miss and thereby add to the list of events this cancer is forcing me to miss this year because it may be the only time in the next few years I get to meet my beautiful new baby cousin – or you know, have a real/social life], I’ve had two 14-hour days this week (out at 7am and not home until 9pm). Keep in mind, this is a time when I need More sleep than usual and am getting Less (still recovering from two surgeries – not yet 8 and 6 weeks out from them respectively – and doing physical therapy for surgical side effects, plus follow-up visits for previous treatments, and meeting new doctors for upcoming treatments, yeah and working full time).
Oh, and because today’s appointment took almost two and a half hours instead of one and a half hours, I’m still going to end up short of work time this week. Now, I will do a lot to try to manage this intrusion into my life, but I do have a limit – and staying after my usual quitting time on a Friday is something that is not going to happen.
Then there’s the appointment itself.
I do realize and acknowledge that every one of the people I met today is caring and supportive and genuinely wants to take the best care of me (and their other patients) that they possibly can – many have chosen this specialty of healthcare after being a patient themselves or knowing a close loved one who has.
How many times during one appointment do you think I should have to mention or remind people that I work for a living – not for the fun of it, but to put food in my mouth and keep a roof over my head. I figure once is fair when I meet a new provider – I mean, they’re supposed to be listening and paying attention, right? They will blithely reply that they do too and/or that lots of their patients work.
Then they set out a plan like I heard this morning:
– I’ll have a second visit in which they’ll do a CT simulation: they’ll take pictures and measurements of me personally to formulate a plan unique to me to treat my cancer according to how my anatomy is built.
– Then I’ll have a third visit where they’ll do a dry run on the actual machine to make sure the plan is appropriate and correct, then do my tattoos, then have my first treatment.
– THEN, at the end of that visit they’ll schedule the rest of the treatments.
Um, I don’t think so. Part of my decision of where and with whom I will get my radiation therapy has to do with scheduling the treatments to allow me to work because Please Refer to Rule # 1 – I work for a living.
So, they’ve indicated in some way they’ve heard me say that and then propose a plan that has me taking time off work for two hour-plus-long appointments and getting permanent marks on my body before scheduling the balance of treatment – thereby risking that their availability will not coordinate with my work schedule because Please Refer to Rule # 1. Can anybody say “ludicrous?” I knew you could.
And then, because no matter what they say, the way they present the plan assumes that my entire day is at Their beck and call, I end up feeling like an asshole because I have to tell them “No, that’s not how you’re going to do this with me because it doesn’t work for My life, no matter what your usual procedure is.” When I’ve stood up for myself, I’ve had people repeatedly tell me they admire and/or respect me for making sure My needs are getting met and being my own advocate, and I appreciate that. At the same time, I get so frustrated because I really should not have to expend that energy to begin with – I don’t have it to spare, and I should not have to keep reminding all the various providers that the interaction they’re having with me is not about their convenience and/or usual procedures.
So I’m spending the balance of my day – at work and after – crying intermittently from the combined physical/mental/emotional exhaustion and frustration for having to waste energy I don’t have to spare and having to repeatedly remind people of things that are so obvious and still seem to vanish from this process time and time again (sorry, belated run-on sentence alert).
Well, that’s been my Friday – hope yours is better…