Kicking Breast Cancer's Butt

Monthly Archives: March 2013

I just got a call from SCCA – my endometrial biopsy is clear!

I still have a boob full of cancer, but so far that’s the ONLY place full of cancer.  The girl parts are secure!

Tina and I have been doing ALL the doctors appointments together.  In many cases this means sitting with waiting women and walking past others.  I swear there are times I feel like an alien in a strange land.  “Who let the MAN, into the ‘Breast Center’”

I have noted that sometimes the man comes to the appointment, then there is a hug and heee’s outta there!!…. off to get a coffee and copy of Sports Illustrated to clear any of the trace estrogen.

But me.. I stay.  I need data.. I do not do well in an information vacuum.

They are polite, but its like on Sesame Street “Which one of these does not belong” … you know the tune.  I see it in their eyes…

For one biopsy the nurse “snuck” me in the back way so I would not run into women changing etc.  (Good idea)

At the Virgina Mason Breast Center I hope most of these women are just there to get normal diagnostics that will lead to a call saying “Your tests came back negative, see you next year.”  Me, I am with my wife because we are defining the future after a diagnosis of cancer  There is soo much to learn and as we found between Virgina Mason and Seattle Cancer Care Alliance, different ideas of what makes a good outcome.  And now at SCCA.. I am pretty sure most of us men and women waiting are sharing some part of a common journey.

I take in data  and I process it, this is how I maintain sanity when life tries to take my choices..  I want… no need to know everything about Tina’s diagnosis and the plans.  Not to counter the doctors but to understand and sometimes ask questions for me, for her and a couple of times to double-check the thinking.  Medicine is a lot about stats being applied to individuals the more data points you have the better you can fit that stats.  We are all different.. but there is collected data that tells us what treatments work best and offer the best risk to reward ratio.

  • What kind of tissue has cancer?
  • How big?
  • How aggressive?
  • Are there nodes that are now involved?
  • etc.

This guides the milestones in the treatment, which surgery, what can be saved, what has to go.  How much chemo.. radiation etc.

So to understand and remain sane… I walk the halls of SCCA Women’s Center with Tina.. And I stay in the room, often to the surprise of the nurses and doctors and always at Tina’s choice.  I feel no need to dash off for a coffee and a quick scan of Popular Mechanics.  It’s clear that from the repeated reminders that “It’s Ok to go. most men don’t want to be here” that.. I don’t fit that mold.. good.. I like not fitting that mold.

For me to be a partner and a lover to my woman I need to be curious about what makes her tick and comfortable with her processes.  I guess all those years buying pads and tampons was training me for this.  I never understood why some men won’t do this, unless they want to make a pass at the check-out girl.  Its part of her life, you should help. Be a man and do it right.. Don’t just grab a box and hope.. stand there and make sure you get the ones she asked for just like you were picking out a new piece of golf gear or a tool… That is not always easy.. I have gotten that look  in the super market too.. “Why is he staring at the tampons?”   Because I am a real man :)

This week again, I knew I made the right choice.  I don’t think either of us was ready for the amount of pain a cramp triggered from a biopsy of the uterus could create.. so I was glad I was there to rub her stomach and hold her hand.

Frankly, this is a big giant, often scary journey and Frodo needs her Samwise… or is it the other way around.

I haven’t written for a while.  Been busy doing life.. working, dealing with family stuff.. watching important TV shows.

There is a point now where this is all just so integrated into life, its is part of normal.  We joke, we laugh.. we get bored we get cranky.

This is probably a three act play.. with bad pacing…

Act I – Diagnosis and discovery – Frodo takes the Ring on the Road…

Act II – Really isn’t watching a castle full of secondary characters getting stormed a bit boring?  Ok we pretty much know what is going on and waiting for surgery and beyond.

Act III – Kicking its butt.. change and change and fatigue and more… with a final dip in the surgery pool for reconstruction…  The Ring goes in the Volcano and all is good.

We did the ultrasound of the girl parts today.. still looks like a fibroid, just a bit larger.. Tina asks.. “do they grow”.. I said “of course it started from zero. ”  But the person doing the scan who as very respectful and talked about what he as doing just enough.. kept calling it a fibroid,, not “the mass” etc.  So I hope that means it is what we all think.. an annoyance…

But today my emotion going to the test was annoyance.. Not doing my job, gotta drive into the city (gee I am channeling my dad) .. not planning on learning anything new.. but it has to be done.

“We have normality. I repeat, we have normality. Anything you still can’t cope  with is therefore your own problem.”

 

We were dropping off Girl Scout Cookies for The Husband’s favorite Aunt.  She said something that I think I unconciously knew, but hadn’t completely considered.  As hard as it is for me to go through the doctor’s appointments, the surgery, the chemotherapy, the radiation (all yet to come) and the physical manifestations of my cancer and it’s treatment – it is probably much, much harder on the people who must watch me go through it all, and knowing there is really nothing they can do.

Our daughter has been pretty quiet with us about the cancer, but I can see she’s worried.  She had her first sleep-over on Saturday, and had really been looking forward to it.  But about midnight, we got a call saying she wanted to come home.  When my baby is crying and saying she wants to come home, I don’t ask questions, I get her home.  However, I suspected it was more than just homesickness.  Last night she confessed, she “wanted to see me one more time, just in case I ‘went’.”  I asked her where I was going – Mexico, Paris, London?  She says “You know?” then looks towards heaven before she makes a face like “dead”.  I told her “I’m not going to die.”  She says “Don’t say that word!”  So clearly, she’s majorly worried about this, about the possiblity that I might die.  No matter how much I try to reassure her, she worries about this, and mostly she worries alone.  I hate this, seeing this fear steal her peace of mind, and there are just no words I can say to make the scared go away.

I’ve seen this show up elsewhere, in people’s discomfort in being around me.  Much of the time, I just stop talking about myself and my cancer, or if I do, I feel a little guilty about dominating the conversation. I know other people are dealing with their own problems, which I’m sorry, they ARE just as important as I think mine are.

My boss is moving cross country, basically by herself.  It’s the same job, and some of the same people, all of whom she likes – but her family is here.  Who is an advocate for her there while I am out dealing with my shit?  She is strong, she is capable, and she is a no-nonsense professional.  She’s a big girl, and she can stick up for herself, and very often for me.  She’s no weakling.  But I still worry – who will be watching her back, who will be monitoring the little details, so she can go out an slay the dragons?  All I’ve got is a little cancer in my breast, and I’ve got The Husband sharpening my swords and taking care of my amour so I can slay my beast.  Who’s going to take care of my boss’s armour while I’m doing my own battle?  She’d tell me not to worry about it, but I still do.

 

So two days ago I was pissed off.  So many doctors appointments, so much waiting, so much “so this is my life now??”

Today, the sun is out, trees are budding out, I still have cancer, but today it feels like everything will be just fine.

More doctors appointments on the docket before surgery day, to check out the uterine fibroid with “increased activity” on the PET scan.  I knew I had the fibroid, so I’m not worried about it.  The team at SCCA isn’t worried about it, neither was Virginia Mason.  But everyone wants to have it looked at, so here we go.  That’s next week, but today I have a nice, sunny day, our baby bunnies are getting their fur, and I just had a nice chat in the ladies room with a co-worker.

Everyone at work is great.  I don’t get the sad face, I get the honest questions and comments ”How are you doing, today?” “I love the blog!” and “You laugh a lot more than you used to.”

My friend in the ladies room, I told her my status, she talked about her own experience, for herself and members of her family.  She said “Breast cancer is more controllable now than ever. You’re going to be fine.”

Today, I really believe that.

It’s three weeks until surgery day.

I am sitting at work, filling out my time card, and I have to saw it’s nice to see all 8s across the “hours worked” row, instead of “sick time.”

I won’t get many more of those weeks before I’m off to the bc rodeo.

I’m being a selfish child right now.  Right now I am seriously pissed about my cancer.

It doesn’t change a damn thing.

I am VERY grateful that so far it has not spread.  But I am still pissed.

I’m about to lose my job, I’m not sure how the insurance and financial issues are going to be worked out, there is a TON of uncertainty, and all I can do is wait and see.

F-ck.

I couldn’t remember which drugs the medical oncologist recommended for me, so I’m listening to the recording of my appointment with SCCA from last week.  The more I listen to her recommendation and why, the more I trust and like her.

I am a very, very lucky woman.  I love my team at Seattle Cancer Care.

I used to think, “If I do everything perfectly, everthing will be alright.”

It’s not that I expected a perfect life.  But I thought “If I floss my teeth every night – like I should – if I keep my house clean and in order (that is never going to happen), if I do everything I’m ‘supposed to do’, in the order I’m supposed to do it, nothing bad will happen, and I’ll have a happy (if boring) life.”

I didn’t even care that much about happy.  I just wanted to be safe from the boogey man.

But as we’ve all since learned, trying to approach anything that even sort of resembles “perfect” achieves only worry lines and heartburn.  It offers no protection from the unknown, boogeyman or otherwise.  Therefore, we shall strive for “Good E. Nuff” in the things that don’t matter so much, such as housework, dishes, and laundry.

There is honor, there is valor, in “good enough”.  If having a little baby crawling all around didn’t teach me that, this experience with breast cancer certainly will.  I’m a slow learner, and this has certainly impressed upon me the fact that I will change how I live my life.  I’m not talking about the physical – eat right, exercise, monitor my health, floss “perfectly” every night.  I mean the BIG stuff.  How I think about my life, how I feel about myself, my strengths and weaknesses, how powerful I really am in this.

The Husband has told me often that I am impressive, amazing, capable of creating greatness.  Yeah, I never believe him.  In my head I keep thinking “You don’t know what a coward I am.”  Nearly every day, it seems, I’ve either been on the verge of a panic attack, or a raging ball of screaming irritability.  That can’t be easy to be around.  I can’t be easy to be around.

On Wednesday, I couldn’t face going to work.  The Husband says I need to feel whatever I feel and know that that’s okay.  That I need to be okay with it.  You have no idea how freeing that is for me.

My mother always scolded us – don’t be grumpy, don’t be crabby, smile!  It was never okay for us to just feel how we felt.  That sentence sounds weird.  It’s better when The Husband says it.

This post has taken many days to write.  I’ve been interrupted, I’ve run out of steam, I can’t find the right words. There’s just so much to say, and I want it all to make sense and be purposeful, and I want to write it while it’s fresh.  But it’s just so much to process.

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.