Kicking Breast Cancer's Butt

Small Rants

Its not important, but it bugs me…

November 30, 2014

What a difference a day, or even a few hours, can make.

Last night I was just about at the end of my rope with the drainage from my left boob.  It seemed like for days all I did was change the dressing, worry about changing my dressing, or washing clothing because my dressing failed to catch all the drainage.  Then it seemed like I had another drainage site open up on the underside of my boob, and stuff was starting to drip out of that site, too.  WTF!

This morning I go to take a shower, and gunk is coming out all over the place.  I get out of the shower, and hold some gauze over both sites while I get a robe on.  I see that the site on the underside of my boob actually has a huge freaking clot trying to work its way out, so I grab some more gauze and try to palpate around the site, and pull out one, two giant clumps of jellied, old blood.  Looks to be about 2 ounces, perhaps.  I don’t know what to do.  Do I pack both sites, just the top, just the bottom, what the hell?  I slap a surgical pad over both and call the after-hours line – again.  He says do what you’ve been doing – for both sites – then call the clinic in the morning.

I go back to pack both sites, and I notice that the original site has closed up.  Yay.  The new site is still draining, so I do my best to pack it, and cover it all again with surgical dressing.

Tonight, I go to change the dressing, and it’s a lot less fluid, and the gauze wicking is sort of mauve, and so is the drainage on the surgical dressing.  I think maybe things are improving.  Yay, again.

The thing I’m not so happy about is the fact that the new site is big enough I can stuff the wicking in with my fingers.  Ugh.

Good news again – it seems like I can’t get very much wicking into the new site.  Maybe that’s because it doesn’t really stay, or at least I don’t feel like it does.  I guess we’ll see what they say at the clinic when I call again tomorrow.

Monday, December 01, 2014

Called the clinic this morning, spoke to Ellen in Dr. Said’s office.  She told me that Dr. Said’s magic potion for promoting wound healing is protein, protein, protein, and vitamins, especially vitamin C, A, and Zinc.  Otherwise, she said keep doing what I’m doing, including packing the gauze tape in the new wound, and they will see me in the clinic at my follow-up appointment.

I feel pretty comfortable with how things are progressing – yesterday was obviously the “getting worse before it gets a crap ton better” stage.  The drainage smells better, and the color is lighter, sort of a pinkish tan instead of the gruesome purple-black jelly I’d gotten used to.  It’s still “ew” but taken in perspective, I’ll take this week’s “ew” over last weeks “ew.”

Plus I’m back to changing the dressing twice a day, instead of 4-5 times a day, and changing my clothes three times regardless because the dressing couldn’t keep up with the drainage.  And now it seems as if I can shortly put this messy chapter behind me.

I’m hopeful, at any rate.

 

My reconstruction, Phase II surgery, was pretty non-traumatic, compared to the Phase I surgery.  Phase II was a little fat grafting, and a tiny bit of reduction, so no drains necessary.

What I didn’t know, is that approximately 10% of patients have drainage issues in what is known as the T junction.  The sort of lollipop shaped incision that encompasses the areola in a circle, and a straight line or lollipop stick that goes down the middle of the breast under the areola.  This part of the incision, under the areola, sometimes separates a little, and blood and fluid drain out.  Not uncommon, but not so common that the possibility was included in my aftercare packet.  When it first started happening to me, it was like a clot or a scab had fallen out, not really bleeding, but it smudged up my clothes.  Still, I freaked out and called the resident on call, since it was after clinic hours, and left word for him or her to call me back.  Reading my aftercare packet again in the 4 minutes it took to for him (for it was a him), I noticed the literature does say some oozing or drainage may occur.  So I felt a little silly by the time the resident called back, but told him what I was seeing anyway.  He asked me the standard questions to determine if any infection was present – temperature of 100 or more, does the tissue seem hot, is the tissue red at all – then told me to cover it with a dressing to keep it from ruining my clothes, otherwise there was nothing to worry about.  Okay, fine.  So I taped a maxi pad to my chest (it’s in the literature, I’m not kidding) since I didn’t have any surgical gauze, and went back to watching “Castle” with my husband.

Everything is all fine and well, until the next night.  Whoa!  What the hell is this?  We’ve gone from a slight ooze to a full-on drip.  The fluid is so dark, it almost looks purple.  Hmm.  Consulting my aftercare packet again, I see a phrase that goes something like “during the healing process, bruises may liquefy, and the fluid may seek a way out through the surgical site” or something to that effect.  Still, I called the resident on call, for it was again after clinic hours.  We again went through infection detection questions – no fever, redness, etc.  Then he told me that sometimes, not often, but maybe about 10% of patients, something comes loose, and while it’s nothing to worry about, he suggested I wear a bra to support the breast, in order to ease the tension on the surgical site, and call the clinic in the morning, to find out if they’d like to see me before my regularly scheduled appointment on Thursday.

So I again was mostly reassured, and went to bed able to sleep that night, not worrying about major surgical malfunctions.

The next morning I called my clinic, and spoke to my surgeon’s primary nurse.  I told her what was happening, and what the previous night’s on-call resident had to say about the tension on my incision, and how something may have come loose.  She poured scorn on that idea, and told me how she felt this was all normal.  She told me to continue keeping the dressing on the site, and they would see me at my regularly scheduled appointment, which was the next day anyway.

At the appointment with the surgeon, her primary resident, and a student, they packed gauze strip wound dressing into the hole in my breast, and taught my husband how to do it at home.  No big deal, he’s used to getting the gross aftercare jobs whenever I have surgery, so obviously he’s the man for the job.

Well, Thursday night we removed the dressing and tape from the site, and pulled the packing gauze out of the wound.  I’m not looking – because there’s $hit coming out of a big, gaping hole in my boob!  Yuck!

First we tried standing in the bathroom to change the dressing.  That didn’t work, so we decided that the best thing to do was for me to lay down, as I had done at the doctor’s office.  No dice, we still couldn’t find where the gauze strip packing was supposed to go in (the doctor made it look SO easy).  So we gave up that night, just covered it with surgical dressing, and went to bed.  My husband was ready to try again in the morning, but I vetoed that idea.  He was so tentative when he’d tried it the first night that I didn’t allow him to try again.

Back to the doctor we go the following week, and we have to make our confession – or I did, anyway – that we never did do the packing of the wound as we had been instructed.  I was adamant that if anyone was going to do the packing, it was going to be me.  I don’t often dig my heels in, but when I do, you’d best just stand aside and let me have my way.  Fortunately, Ken is a bright man, and apparently so are my doctor and the doctor’s resident.  So Dr. Colohan’s clinic nurse came in to give me the tutorial on packing a wound, and a new bottle of gauze strip tape.  After the first few days, I have to say I’m getting better at it.  The first couple of times, I think it took five attempts to reach success, and I still don’t believe I was packing as much tape into the wound.

Now, several days later, I’m packing like a champ.  And packing more and more into the wound, it seems.  And still soaking the maxi pads I’ve been taping to my chest.  Plus it smells like old blood, and I’m passing clots.  Ugh.  I was joking with Ken last night, and said it’s like my boob is having a period.  He laughed out loud, and said “If you haven’t used it already, that’s a great title for a blog post.”  Which I didn’t use, but still, here we are talking about it.

Last night I had said that at least I wasn’t having cramps with my boob-period, but this morning I’m getting these twinges, that I am assuming are the clots passing, so in a way my boob is having cramps to go along with its period.  And it’s the Mother of all periods, because it’s a rather heavy flow, and it never seems to end.  And it’s all normal.  Awesome.

I was doing some research last night, and based on what I’m reading about other patient’s experience, it seems like it gets worse before it gets a lot better, which is where I seem to be.  And totally normal for the exudate (ha!  That’s a medical type word, it means the stuff that comes out of a wound) to smell kind of yucky.  Not completely foul, as that along with a higher than normal temperature and redness of the breast, means infection.  But it’s totally normal for a wound to smell rusty, musty, or like old blood, which is how mine smells.  Ew.  As unpleasant as that sounds, I found that rather reassuring.  I was worried that something was going horribly wrong, but it turns out this is all normal, and possibly even a sign that soon things will get better.

Lord, have mercy, I certainly hope that is true.

I am now five weeks out from my primary reconstructive surgery.  Things are progressing pretty well, which even three weeks ago I wouldn’t have believed.

I came home zonked out on pain medication, and extremely emotional.  I couldn’t get up the stairs by myself, and using the bathroom was a bit intimidating.  I couldn’t stand up completely straight (that changed pretty quickly, however) and I wasn’t allowed to use my right arm to lift or pull anything – including pulling myself up the stairs using the handrail.  I looked like Frankenstein, with a grisly looking smile-shaped incision on my abdomen, my scabby new belly button, and the constantly changing (not apparently for the better) “boob.”   I don’t remember that I had a great deal of pain, but after what I experienced with the mastectomy, I was terrified to get into that particular circle of hell, and kept on top of my pain medication.  So I didn’t hurt that much, but I still cried a lot.  I asked myself, “What the hell have I done?  So I only had one boob, at least I could use my arm, I could bend at the waist to unload the dishwasher, I could clean my kitchen!  I could drink coffee, for Pete’s sake!”  So I cried and cried, and wished I hadn’t done this thing, and Ken did his best to soothe me, and convince me that one day this would pass, and I would be glad I had done it.  One day we were wracking out brains, trying to figure out where my emotions were coming from.  Was I afraid of something?  Was I simply frustrated?  What could be behind it?  When my 10-year-old walked into the room, sat down beside me, patted me on the head and said “Poor mama.  You need some coffee, don’t you?”  I blinked at her, then started to laugh.  The grown-ups were twisting themselves into knots, and my little innocent child put her finger right on the problem.  I won’t say my emotions settled down after that, but it was easier to coast through them and be patient, and to wait until my post-op follow-up with Dr. Neligan.  And sure enough, at my follow-up, he gave me the go-ahead for resuming my regular diet, including coffee.  Halleluiah!

When I first got home from the hospital after the surgery, I had to pee every hour and a half to two hours, and there are no bathrooms on the main floor where I spent the first two nights.  Which meant I had to wake Ken to come downstairs in the middle of the night to push my butt up the stairs, and wait to brace me from falling on the trip back down.  Needless to say it was a HUGE relief to both of us when Ken fixed up our bed so I could sleep in our bedroom, and still have my torso propped up as per the hospital discharge instructions.  I still needed his help to get me OUT of the bed in the middle of the night when I had to go, but at least we could cut out the mountain climbing just to get me there.  And after a few days, I could get myself out of bed and back into bed, so he could sleep at night again.  Until about 3 weeks ago, that is.

One Sunday night, I was having pain in my belly, which, to be frank, felt like horrendous gas pain.  I took an anti-gas tablet, and felt a little better.  We went to bed around 11pm that night.  About 3:30 in morning, after waking with pain throughout the long night, I tried to sit up, or raise my legs, trying to find some position to relieve the pressure, and release the gas.  After about an hour of whimpering, I was in the bathroom, sweating and clammy all over, crying in pain, which soon turned to screams, waking Ken immediately and bringing him to the door of our bathroom, asking me what was going on.  I was in so much pain, I couldn’t even articulate what I was feeling.  I was like a mute cavewoman, not able to understand how to respond to his questions, only crying out in agony.  At that, he went across the hall to wake our daughter, after declaring to me that we were going to the hospital.  I wasn’t sure I could get downstairs to the car, much less sit in it while we drove to the nearest emergency room – and I was definitely sure I couldn’t make it all the way to the UW Hospital, even though if my pain was connected to my recent surgery, I knew well enough that I should suck it up and go there.  But the pain subsided, the sweating stopped, and we all got ready to settle back down to sleep, when another wave of pain hit me, and I was screaming again.  That was enough for Ken, he hustled us all down stairs, into the car, and we were on our way to the nearest emergency room, Ken and our daughter wearing sensible clothes, me still in my purple polar bear jammie pants.  Yeah, I was looking great.

We got all checked in, when another wave of pain hit, and the nurse quickly put me in a wheel chair and raced me down to an exam room, my husband staying behind to get out terribly frightened little girl settled in the waiting room before coming back to join me.  I never like to leave her alone anywhere, but I guessed she’d be safe in a hospital waiting room, especially as she was under the watchful eye of the check-in nurse.  She was fine the whole time, though after we were home she told me there was one sort of creepy dude that passed through, asking her if she was feeling bad.  No, she said, just waiting for my mom.  And that was the end of the conversation.

Meanwhile, I was dealing with my own crap in exam room 8, answering questions, having stuff stuck all over me to monitor my heart, and having countless (I’m not kidding, I lost count) needle pokes, each of the nurses and medical techs taking their turn trying to find a vein, then finding themselves unsuccessful in squeezing any blood out of me.  I had bruises all over my left hand for over a week after that.  The on-duty emergency room doctor was trying to rule out what my issues weren’t, before he could hazard a guess as to what they were.  But, no blood, and after a while I announced I’d had enough, and was ready to check out of there in frustration.  We’d been there a couple of hours by then, I guess, Ken going out to the waiting area occasionally to check on the kid, or bringing her back to sit with us – until they got their poky needles out again, then she and dad went back to the waiting area.  Ken came back, but the kid decided to call it a night, and wait for me until it was time to check out.  The nurse at the check in desk found a blanket and a cuddly toy for her, and she settled down to watch the early morning kid shows on PBS.

In that time, we’d had a shift change, and I had a new emergency room doctor on duty, and after consulting with the doctor just wrapping up his shift, we all decided the blood draw wasn’t going to work, and so decided to proceed with other diagnostics.  I have to tell you, I almost kissed him when he sat down next to me and gave me his theory (constipation, not appendicitis or drainage fail), then described the symptoms of that theory, which mirrored exactly how I felt, and which I hadn’t been able to articulate.  So he sent me to get x-rayed, which the tech did with me lying down, after the doctor had told me I would be standing up.  I didn’t protest however, as I just wanted to get the heck out of there, and so I survived it.  About 10 minutes later, after I had gotten back into that torture device called a hospital bed, I needed to use the bathroom.  No productive action there, but I made it down there and back under my own power, and without an incident of pain.  Yay.

Another 15 minutes goes by, and the doctor comes back to show us my x-ray.  Yup, the source of my pain is indeed a surplus of poo, and I was massively backed up.  How embarrassing.  I’m in the emergency room, and I’ve wasted everyone’s time because of constipation.  But at least I’m not facing another surgery.  The doctor goes back to write up my prescription (over the counter Miralax to start the next day, after a single 296ml dose of saline laxative that day), and set my discharge papers in motion.  Oh, and no more of the prescription pain meds, which contribute to the constipation.  I only had one more pill to go, and I wasn’t sad to give it up.  Dr. Neligan’s nurse had told me earlier that week that is was common practice to go home with a prescription for paid meds, and to have one refill, and only one.  They like to have patients go back to over the counter pain relievers, though you are allowed to call them for something stronger if you need it.  The prescription made me feel sleepy, and I don’t think it helped my mood any, either.  So no, I was happy to give up the “good stuff” a few hours early for Advil and my regular mood altering substance – caffeine.  The good news is, once we got home from the emergency room visit, I didn’t have any more screaming episodes.  We had productive visits to the bathroom starting about 90 minutes after I took the yucky tasting saline concoction (which you can buy over the counter at Walgreen’s, in case you need to know).  No more cramps or spasms after that, for which I am extremely grateful.  It’s nice to be free from mind-altering pain.  It let’s you focus on other things, like recovering from surgery and building your stamina so you can do important stuff, like empty the dishwasher all by yourself.  So, maybe it wasn’t a waste to go to the emergency room after all.

The lesson I learned after the first surgery – stay on top of pain medication.  The lessons learned after this surgery – 1) Stay on top of your pain medication, but get off the prescription crap as fast as you can.  2) Sometimes the simplest answer is the solution to a great problem.  Oh, and 3)When the discharge nurse tells you to get some Miralax and take it, it’s not just a suggestion.  Fool.

Chemo ages you.

I’m convinced of that.

Just over one year ago I was walking a mile every day to work, and sometimes another mile between offices during the day.

Yesterday, I had done one load of laundry, one load of dishes, made lunch for Michaela and Ken, and then lunch and tea for myself, and after than my legs were heavy and my feet were in pain.

It amazes me to think that a mere 14 years ago I was stomping all over London and the British countryside for 10 weeks, and I was rarely as tired as I am right now.

Grieving what was

I’m grieving today.  Grieving for the young woman I once was.  I didn’t appreciate what I had at the time.  I guess everyone wants what they don’t have, somehow believing it better than what they do have.  I regretted my large pores, my broad forehead, my prominent chin.

Like most women, I tried in vain to shrink my pores.

For a long time, I wore my hair long, and kept it pulled back from my face, even as I looked at my reflection in disgust, considering my giant forehead.

And I actually considered plastic surgery to “dock” my out-there chin.

Fool.  Looking back at photos of myself at 25, all that I see is how beautiful I looked.  All twenty-somethings are beautiful.  They can’t help it.  You’re young, your skin is taut, and dark circles under your eyes just make you more fascinating.  It means you have an interesting life, outside of your work life.  You roll out of bed, messy hair and rumpled clothes, and last night’s makeup.  You look gorgeous.  You don’t believe me now, but when you’re 40, look back at pictures of yourself at this age, and you’ll see I was right.

I look back at the image the 25-year-old that I was, and I grieve for what has been lost.  The youthful outlook, the anything-could-happen-so-everything-wonderful-is-yet-possible mind set.

I’m no longer that young woman, with the quick, light step.  I still believe anything is possible, and I will always believe in hope.  But I have to hold onto that based on faith – I don’t have the energy I once had, and I sure don’t have the physical resilience I once had.  And now I accept the fact that I am mortal.  I don’t think I fully believed in death and mortality when I was in my 20’s.  It seemed so far away, as to seem like only a story.  Yes, that happens to some people.  But not to me.

But today, I am disabled.  At least for the foreseeable future.  That is a hard truth to come up against.  I am not what I once was.  And I never will be.

I am strong.  I am powerful.  But I now walk with a shuffle and a little bit of a limp.  I walk like an old woman.

In my mind, I see the image of who I was 25 years ago, and I see a young woman skipping down the escalator at Westlake Mall.  I remember a young man, a stranger, approaching that woman, and asking her to have lunch with him, because he is so drawn to her.

Then I look in the mirror, and grieve.

I sit at my computer, and my hands begin to tingle as I type this.  Shortly they will feel numb, and I will have to stop.

I get up from the computer to walk into the living room to rest my hands.  I shuffle along, because my hips are stiff, and my legs ache.  Where is that girl with the light step, now, I wonder?

I sit down for a while, putting my feet up, to take the pressure off my knees and my hips.  I can’t knit, because that hurts, too.

I try to relax, and I have stabbing pains in my heel, I assume from neuropathy.

I am disabled.  But I am glad to be alive.

Its been quite a while since I have written here.  I think part of my coping system is to normalize as much as possible when there isn’t some kind of decision or change coming.

Once we hit chemo and Tina was doing well with it.  I just integrated it into the schedule.  Monday Work, Tuesday Work, Wednesday Work, Thursday Chemo and Italian Sub at SCCA cafeteria Yumm!, Friday work.  Weekend.. be mostly unproductive [Repeat].

I am close to caught up with work and we have a bit of a break from routine with the two week chemo pause.  I want to have the discussion of what is the benefit of the next 5 treatments vs the long-term risk.  I had painful planters warts that I thought were calluses this last spring and for a few weeks walking more than a hundred yards would become very painful.  Once I realized they were warts and used the Freeze stuff. They were easy to treat and go away.  But now I worry about Tina’s hand and feet and the real live affect of pain and numbness.

Walks in Paris and London, Exploring Yellowstone and Manhattan all the things I would like to get back on to to-do list for the coming years.  Then there are hands, for beading, writing and knitting.   The things that bring joy and relaxing to Tina.  I worry that in a rush to just get it done…  Or throw the book at stray cancer cells that might not even exist.. will have costs that are pretty high.

So as this round has brought on increasing pain and affects I have been falling out of the routine more and back into worry and crisis.  As Tina mentioned I have have more nights of poor sleep.

Understand we love our current oncologist.  The moment she walked in I saw it, she was a Geek.. that is compliment… I read her bio before we chose her and meeting her I got that vibe of someone who is immersed in her field of expertise and cares about getting it right and learning more for the patient.  Not just BEING RIGHT.. Geeks know their stuff BUT are constantly learning and adapting to new info.  Geeks take knowledge and turn it into a living art no matter the subject.

So I want to have the conversation about value vs. risk this week when we go back in to start the last five infusions of TAXOL. but once I frame the conversation.. I totally trust the Geek magic and her passion for this medicine to make the final call.

Rant On:

This is one of those things that you really don’t notice much, until it’s part of your life.   If you take even an hour to study what is going on around cancer and the medicine, the vast majority of people are kicking its butt and surviving.  The average 5 year survival rate is over 60% across ALL CANCERS.  Lung being one of the worst but, breast is 90%+ and prostate is at 100%.  There are some really bad cancers and stage IV is always a fight.. but people are winning those fights too.

However, anytime a lazy TV writer even on shows we love that usually have great writing like “Suits” on USA.  [This may be the best show on TV right now.*]  The plot device for killing off-screen characters with pathos is to have them die with cancer.  Really people?.. Those of us out here fighting the beast are winning.  But you wouldn’t know it from the mass casualties of fictitious off-screen wives, brothers etc. who just die from cancer to create a moment of pain to show how the characters can feel.

I have to say when I hear “My BLANK is dying of cancer” then see a hug to create emotion between two characters, its starting to piss me off.

So you have a tough character with a hard emotional shell,  like a Harvey Spector (Suits) you need to show some emotion, really is it cancer, death or nothing?  Get creative people surprise us!!

Yes, I want to get through one season of one drama or even ”a very special” episode of a sit-com.. without the LAZY ASS writers killing someone with cancer.

Rant Off:

 *If you haven’t watched Suits (USA Network), get on-line, rent the DVDs, whatever and start with season one and watch.  This show has the best cast chemistry and writing IMHO since West Wing but is a lot more fun with some real solid emotional moments.  

So I can’t stand door-to-door sales types, like most of you.  I never know what to say to get them off my porch, without feeling like a bitch for being honest when I say “I am not interested.”  Whatever feeble reason I give, it’s never good enough, and I find myself in a battle of excuses and counter-attacks, until I am weary and confirmed as the wimp that I know I am.

Well, today was a little different.  I’m sitting at home, worn out from traveling and chemo, trying to relax and enjoy Phillippa Gregory’s “The Lady of the Rivers”, when some poopedy-poop head starts leaning on my doorbell, and then pounding on the door, apparently because I am not moving fast enough. (It’s a long rambler, okay?)  I’m not wearing a head covering, cause even though it’s only 76 degrees outside, for a woman in the middle of chemo-induced menopause, it’s a freaking heat wave.  I’m ALWAYS too hot.  Except when I’m too cold, when I’m also freaking irritable.  The cold lasts about 37 seconds, the irritable lasts all day.

Anyway, there I am, all Amazon warrior princess, bald-headed and cranky.  I get to the door, and open it to a FIOS representative with his little clipboard and badge.  Shit.  Not even the UPS guy with a package for me.  Packages I cheer up for, and can even manage a smile.  But no, it’s a FIOS salesmen.  They are here about every three months, no matter if I already have FIOS or not (we don’t).  For this I hate them.  “Hi!” he says, way too cheerfully.  “Yeah?” I say, my tone implying what the hell do you want NOW.  “I’m from FIOS,” he chirps, again, way too cheerfully.  I pause, taking in his badge, his clipboard, his anxious face.  “I don’t want any,” I say, tersely.  “Okay!” he says, apparently very happy to be released, and no argument or cajoling to keep the sale.  Wow, that was easy.

Either his sales quota is in good shape, and he doesn’t really need ME, or it’s just not worth pursuing if it means he has to deal with ME, the one-breasted, bald-headed crank of Lynnwood.  Either way, I’m laughing my butt off, as  to me, this is the funniest thing EVER.

Bald is power.  I may keep it this way.

The weather here has been so hot, I find that often I can’t bear to wear any kind of head covering when I go out.  Out to get the mail, out to take the trash to the curb, and even out to the store.

Sometimes I forget I don’t have any hair.

The response I get from other human beings when I greet them with my big, bald head varies.  The ladies and gentleman at Starbuck’s, no matter what city, who graciously minister to coffee addicts around the globe, have been unfailingly kind, cheerful, and lovely.  From Seattle to Chehalis, they greet me as if a bald-headed woman is the most normal, charming creature in the world.  For this, I love you all.  You made a newly bald woman much less self conscious.  The FedEx man is a little surprised when I open the door, but barely hesitates as he asks for my signature before handing me my packages.  Lunching with friends recently in downtown Seattle, no one bats an eye – extremes in hair style are seen practically every day, so what’s the big deal?  And of course, bald heads are always in fashion at the Port Draw Lab at Seattle Cancer Care.  I’m only one of  the many cool kids at SCCA.

Tuesday I was caught by surprise.  As I was leaving the grocery store with my husband and child, I was accosted by a man collecting signatures.  After I refused to stop and sign his petition, or whatever, he chases me down.  He says to me, in reference to my baldness, how he understands what I’m going through, cause his mom died (presumably of cancer), and I need to look up some natural oil, that he claims is a “cure for cancer.”  Now, I’m used to the people I know offering their advice and support.  I’ve been frank with them about what I’m dealing with, and I welcome their recommendations and suggestions, as they all have a personal experience with me, and most have experience with cancer.  But here is a complete stranger offering me his comfort and compassion.  Yes,  I could simply thank him politely and go about my business.  Which I honestly tried to do, but he kept chasing me to tell me about his wonderful cure.  I have never been comfortable with confrontation, even if I am within my rights such as in this instance to tell him to back off.  He’s practically stalking me, and I’m getting a little pissed off.  I’ve been polite, and told him I’m not interested, but he’s insisting on “helping” me.

Now, I’m completely pathetic at asserting myself, enforcing boundaries.  I don’t like to hurt people’s feelings.  So it wouldn’t have been natural to me to quip “What are you talking about?  I cut my hair like this on purpose!”

My bald head is none of his f-ing business.  And I really didn’t appreciate being compared to his dead mother, because, you know, SHE DIED.

The more I thought about the encounter, the madder I got.  I would have liked to tell him, as politely as possible “You don’t know me, so don’t try to tell me that you understand what I’m going through, because you really, REALLY don’t.   There are things in my life that, believe it or not, are uglier than the obvious.  I’m not also interested in your naturopathic cancer cure.  I’m being treated at what might possibly be considered one of the best, if not THE best facility on the west coast, and possibly even the Nation.  The professionals at Seattle Cancer Care Alliance haven’t included your quack cure in my regimen; I’m certainly not going to follow your advice over their proven expertise.  And obviously, your shit didn’t work, cause your mom is DEAD.”   As gratifying as it might have been in the moment, that kind of thing would have made me feel even worse later on.  The guy meant well, though he was seriously trespassing on me, and my family.  I had my kid with me, for Pete’s sake!  This was not the time or place to being talking to me, a complete STRANGER, about your poor dead mother.

I used to go out with a man who often lamented my lack of sass and brass.  “Why can’t you be more like your sister?” he’d complain.  But I’m not like that, and yesterday’s incident convinced me that I never will be.  I didn’t like the man in front of the grocery store hounding me, and I didn’t appreciate his well-meant butting in.  But I also don’t want to be the one shutting down one human beings compassion for another, however ill placed it is.  Yesterday, while I would have liked to leave a greater impression on him than my obvious intention to simply to get away from him as quickly as I could (and that must have been hurtful enough), all I could think of is “I’ve got frozen food to get home as soon as possible, I have my child with me, and I don’t have time for this, please, sir, just stop talking to me and go away.”

So if ever you encounter someone like me, a bald-headed stranger, or anyone obviously dealing with things beyond normal life (what’s normal, anyway?) and you try to express your compassion for them as they walk away, try not to be offended by what seems like a snub.  They know you mean well.  It just may be that your concern for them is one drop in the bucket more than they can handle at that moment.  Let them pass, but don’t give up on people, and never give up on your compassion for your fellow man, woman, or child.  We’re all of us dealing with some kind of bat guano.

My love and best wishes to you in your own fight.

 

Not sure if it came up yet.  We have been busy.. often actually living life vs cramming cancer knowledge.

I noted Tina said it had always been the plan to move to Seattle Cancer Care Alliance.  I think we knew that it was likely.  But I will say after that first day when reality caught with some overly optimistic written notes on the MRI at Virgina Mason we liked the people working with us.  When it comes to the people and the diagnostics, they were top-notch.  And Tina grew attached to the VM team and it felt like a break-up when we did decide to move.. I am sure she will tell you more about that.

Lets close out some Nit Picks with VM (small rant alert):

Yes.. I ran into some odd issues with parking… (It’s nice to make the small important when sooo much that is giant is happening to you daily)  The last time we were there I lost my ticket.  So I walked over to the booth and asked what we could do.  “Lost Ticket.. $20″  was the answer.  Clearly no options were being offered.. [This is a theme at VM.. MORE ON THAT LATER]  I was so ready to be out of there, partly because I had a small cold and voluntarily was wearing a paper mask , though I saw no one else doing it.  And because all the tests and lack of sleep…. I was just plain PO’d at life for that afternoon.  So I go to the car and resolve that $20 for 3.5 hours of parking is a small ransom to get me home fast with my wife who had spent two and a half hours alone, in prep for the PET scan.

(BTW.. for those hanging on every word  The PET scan was as normal as one could hope for someone with a breast full of cancer.  No indications of any spread outside the breast at all.  YEAH!!!!  That means everything to us. They want us to check out something lower down.. but pretty sure it was there last summer and already diagnosed benign.. and we have been told.. that is not where it would go next SO WOW!  JACKPOT  Cancer is still local to one Boob!!! )

Back to the parking RANT….So I want out.. and $20 is fine.  Except now I am in the car at the gate.and I hand him a $20.  Out comes a clip board “Can you fill out this form”  WTF!! Why not ask that when we walked up.. not when we want OUT NOW.. and people are behind us.  OMG bad business process…It may seem small but parking payments and rules at VM annoy me.. who is pocketing all this skim?  I am not filling out the BLANKING Form.. I am taking my wife home!  I am out of here.

Back to Medicine

VM Rocks in getting you into tests, getting the results fast (sometimes too fast)  and they nailed the diagnosis.  In a little over 2 weeks.. We had a pile of images, biopsy data etc.  that frankly.. is the opposite of some parts of the industrialized and socialized world.  Even Seattle Cancer Care Alliance was impressed with the speed and the amount of data we brought them for first day.  So kudos to VM. Outside of those in charge or protecting the parking profits.. Every single other person was fantastic.  I am sure to this very day.. VM was completely capable of saving Tina’s life from this pending threat of stage 3A breast cancer.

HOWEVER….

The VM team had pretty clearly steered us to a classic mastectomy, that with the one node became a modified radical mastectomy.They literally were making the preservation of any part of the breast sound like an annoying thing no one would want.  We were told it would get in the way of using the prosthetics to leave any of the breast skin etc.  Much better to remove it all and leave a classic several inch scar where her breast had been. Then after a year you can start the several month process of reconstruction.  Tina says.. they were making decisions FOR her.. and options she should have had were not being offered on equal footing.

Why do I love SCCA so much:

  • $4 Maximum Parking with in-out privileges for patients!! (and the you self stamp your ticket in the lobby.. No taking of a medical history)
  • Screening of people for colds etc.  I was asked about my recently ended cold and asked to put on the mask..  They are protecting those who come there to be helped and may have compromised immune systems ACTIVELY DOING IT.  So “the husband” walked around the place all day with a PINK face mask.. and glad to do it.

The exam room was very nice, but a bit small.  The cafeteria in the main building was TINY.. not the massive pseudo Denny’s at VM.  But I didn’t care.

Why do I love SCCA..  after they all examined Tina and worked through 2 weeks of diagnostic tests, our surgeon walked in and began to outline something called a “Skin Saving Mastectomy“  She said because Tina is still young that doing [what VM planned] a full mastectomy and later implants would mean she had at least one replacement coming.  They are planning for Tina to be with me for 20+ more years… So there will be a UW plastic surgeon in there for the first surgery.. helping set up the process that will allow him to rebuild her breast.. from her own breast skin and fatty tissue from her body in the end after the cancer is gone.  It will be just a few months more to a reconstructed natural tissue breast vs an implant. It that will be alive and natural and not need replacement in 10 years..

OMG!! they not only are out to kill the cancer, with the stats to prove then can…. they are planing to make my wife as whole as possible for her next 20-30 years!! I could cry..  

VM was clearly looking at treating the cancer and the 5 years survival target .. Good diagnostics, skilled doctors.. just a different view of medicine and what makes a good outcome.. IMHO..  But I really thank them and am pretty sure for an earlier stage cancer.. they have some great things to offer women. Some that only they offer.  But for Tina.. SCCA is treating her, not just the cancer.

It as a good week on our cancer journey.. $4 parking :) , clear body scans and a plan to put back most of what the cancer will take.  Yes, it was a good week at our house.

My low-carb diet ends in one minute.  The Husband reminded me at quarter to that I had 15 minutes left to eat.  I told him I didn’t want to eat anymore, I was so full of cheese, pepperoni, and nuts.  Now I’m hungry again, and I already brushed my teeth. Damn.

Now the 12 hour (really it’s more like 14-15 hours) fast begins, in preparation for my PET scan.  I dose up on whatever the tracer is – glucose, I guess, since I’ve been avoiding sugars all weekend – at the 12-hour mark, then wait another two hours before I can be scanned and get out of there.

I’ve been worried all afternoon and evening that I would forget myself and carb out, which would really suck so close to the finish line.  Bread, chocolate, red licorice (yes, I know it’s not real licorice, so what?  I’m hungry!)

All I can have between now and then until after the scan is water and medications.  Goody.  At least I get to keep my anti-anxiety pills.  Better offer one to The Husband.  Oh, wait, he’s driving.

Sorry honey, snarky-cranky-wife alert.