July 31, 2012

O, Happy Day!

(I'll continue adding to this post as the day goes on and I'm able to via the hospital wireless.)

---9:15am---
Laura is having her rock-hard expander boobies switched out and the doctor will "slide in" some soft silicone implants during today's surgery. She is also getting her port removed from her left upper chest area as an added bonus!

We will be getting to the hospital a little before 1pm and the surgery is scheduled to begin around 2:30pm.

Thank you for keeping us in your thoughts and prayers!


---16:10---
Surgery went well and I had a brief minute to see Laura as she is coming out of her anesthesia. The nurse gave her 2mg of Dilaudid, which packs a punch based on her still mostly sleeping right now. The nurse will start bringing her to around 5:15 and we should be able to see her again at that time.

We are all very thankful that the surgery went so well and are hoping for a quiet calm recovery period in the weeks to come.


---19:45---
Laura is back home!! We weren't sure how it would go with the nausea, but thankfully Laura fell asleep on the ride home and we made it without a "spit up" incident. She is now sleeping on Adam's recliner, which he let her borrow for chemo and it is again coming in handy for this surgery. Thanks Adam we really appreciate it!

The surgeon was very happy with how the surgery went and Laura took a little peek at her new boobies in the recovery room under her new bra and said, "Wow it looks different!" You couldn't see very much, but you can tell the overfull expanders are a thing of the past and I know Laura is super stoked to experience the softer, supple texture of the silicone implants against her skin.

She is on strict orders to be like a T-Rex and not lift her arms for 6 weeks and no exertion as her post surgery cauterized arteries could rupture from elevated blood pressure. These next few weeks will be all about relaxing and taking it easy. And if that doesn't work I have been working on my knots during our camping trips and can tie her up in a double bowline!

We are absolutely relieved to be at home where it is quiet and peaceful and it warms my heart and makes me smile to see her sleeping in the place she is most comfortable. Right now she has her mouth open in typical "narcotic sleeping Laura" fashion and is hardly making a sound.

Thanks so much for the blog comments and emails. I know Laura will want to check her email and see what is going on in the world once the anesthesia wears off and she is back on this planet.

Ta-ta for now,
Joshua (& sleeping Laura)

July 30, 2012

Systemic Thinking About Cancer with Dr. David Agus

These are a couple of videos I came across on TED and Khan Academy by Dr. David Agus, that I thought would be worthwhile sharing. They weren't exactly easy to find so they might be to some of you. Hope you find the information useful!

Too often, says David Agus cancer treatments have a short-sighted focus on individual cells. He suggests a new, cross-disciplinary approach, using atypical drugs, computer modeling and protein analysis to diagnose and treat the whole body. Listen to his TED talk: A New Strategy In The War on Cancer to hear what he has to do say about the need to "Think Differently" and find a new approach to stopping cancer.



After watching the above video I also found the following educational videos from Khan Academy by Dr Agus, which are really great for further understand systemic thinking and the effect of inflammation on the body as they relate to cancer. I thought these were better than the TED talk!

Sal from Khan Academy interviews Dr. Agus on Systemic Thinking About Cancer:



Another Khan Academy Interview with Dr Agus on the topic of Inflammation:

July 23, 2012

Oh No, You Di'int!

Occasionally I hear tidbits come out of people's mouths that I'd like to verbally combat. Instead of being a word warrior to strangers, I've collected some of the particulars that have been said to me so I can process them here.

1. "If I were to have to get cancer, I'd want what you have" - Really? Do you even know what I have? Not all subtypes of cancers are created equal. And I'm not in a contest for who's got it worse--ALL cancer sucks! I'll take what's behind door #3, thank you: NO cancer.

2. "You're an inspiration" - While I'm sure this may seem true to the person saying it, hearing it makes me wince a little. I think what people mean is that they appreciate reading certain articles, hearing about actions we're taking to be informed and become more healthy, or knowing information about my particular diagnosis. I don't intend to be inspirational; I'm just going through the BC machine step-by-step in the only way I know how. My drive to blog is fueled by my own curiosity to know more about this disease, to share with family~friends~acquaintenances~strangers, to put out into the world what I would like to see, and to document this journey. What a trip to look in the rear-view mirror -- even at this point.

3. "I had a <enter relationship> that had breast cancer ... She went through <enter long detailed story> and didn't make it ... She left behind <enter children, family members>" - I want to scream: "What are you thinking?!!"  I am getting assistance on how to just plain leave conversations that begin like this. While the person may think they're trying to relate, they're really just processing what happened in their life. They aren't thinking about the effect of this news on others or anyone going through/having gone through their own journey.

4. "What are you going to do when you're done with this? / Any plans for the future?" - When AM I done with this? There's a tricky gray area that I fall into because of not having a complete response after my first 16 weeks of chemotherapy. I participated in the clinical trial (12 wks additional chemo) for several reasons - one of those is to help my chances of survival. Was I "done" at the time of my surgery? Was I "done" after the second run of chemo? How about after reconstruction is over? The list of future dates to check in with my status is far-reaching. I'll never be proclaimed "cancer free" - only possibly "no evidence of disease" if/when future tests come back in my favor.

My recurrence likelihood.

The curvy graph line above with "2 1/2" at its apex is my recurrence likelihood. Where the time and chance of recurrence axes meet is after the clinical trial ended (the recurrence timer began after my final infusion). As you can see on this graph Dr. K drew for me, the likelihood for recurrence spikes at 2.5 years and tapers off significantly at 5 years. That right, folks, I'll be having one heck of a 40th/41st birthday party. Or at least I sure hope so! No black-filled, geriatric-like celebration for me when that time rolls around. It will be such a major milestone to reach that it should be a most happy and celebratory occasion.

5. "I hope it all works out." - We do, too! This is better than "I hope you don't die"... but still leaves something to be desired.

July 20, 2012

Medical ID/Alert Bracelet

My bracelet.
I have an increased risk of lymphedema due to my double mastectomy surgery. To be more specific, it's primarily because of my right-side modified radical mastectomy: the entire breast was removed-including the tissue, areola, and nipple-as well as all lymph nodes in the armpit area.

Because of this risk, I believe it's a good idea to have a medical ID/alert bracelet on my right arm. If I am incapacitated in any way, the bracelet provides valuable information that can save me from getting "help" that could end up hurting me.

My engraved message is
"right arm: no needles - no bp"
After hemming and hawing about which bracelet to purchase (there are a TON of options out there), I decided on a stainless steel mesh bracelet...only to find out that the manufacturer had run out of right arm bracelets. Maddening! So the search began again and I found a suitable alternative (at a higher cost). There was an issue with the engraving, so I returned the original one sent to me. After all, if this bracelet is for medical personnel to read and interpret, the engraved message must be clear!

I was elated when the corrected bracelet arrived right before my first out-of-state trip. Perfect timing! I've worn it every day since receiving it and am happy with my choice. It's comfortable, doesn't pinch my skin or arm hair, and is rather low profile. Wearing this bracelet gives me a sense of security.

Some other medical alert bracelets are more fashionable, but isn't the point for medical personnel to see the alert easily? I wouldn't trust a fashionable bauble-studded bracelet to do the job...

July 18, 2012

Switch-out Surgery Explained

A little "present" I left for my plastic surgeon.
Lately I've been fielding questions like What's next? and What's this next surgery all about, anyway? Rather than press rewind and play a few more times, I thought typing and sharing on this blog might be a good way to inform everyone of what's happening at my surgery late this month.

First off, nothing is "wrong" - this is a reconstruction-related surgery. I'm under construction and this is a major step towards piecing me back together. During my double mastectomy surgery last year, expanders (which are basically like thick, ribbed plastic bags with magnetic ports in them) were inserted between my pecs and filled to 150cc. I went in for regular saline injections to fill the expanders which, in turn, stretched my breast skin. To learn more about that, read about my expansion process and filling them up
Now that my skin is stretched, radiation is over, the clinical trial is complete, and I am healing well from all of that...it's time for the switch-out surgery.

There are two main goals for this surgery:

1. Take expanders out; insert implants. These thick, stiff expanders have a one-way ticket outta here! Although useful and necessary for the reconstruction process, I'll be happy to not have these things in me anymore. Dr. B, my plastic surgeon, will use the same incision line left from my mastectomy surgery (in the middle of my breast) to take out expanders and insert implants. He may also remove scar tissue that's built up if he feels it's necessary.

2. Remove my port. I had the port inserted on June 17, 2011 to aid me in receiving chemotherapy treatments. While it makes me feel bionic, it kinda (still) freaks out Joshua and it's time to say goodbye to this trusty piece of technology. Thankfully, I never had a blockage or clot while the port was inside of me - I know several other women that have had issues with theirs. I've had it flushed every 4 weeks when it hasn't been in use and it's behaved nicely. I've also appreciated nobody having to fish around for a good vein in my arm. The port made things nice and simple that way!
----------

Other FAQs related to this surgery:

What's this surgery going to be like for you?
A piece of cake, 'cause I won't be an active participant. :) OK, but really...it'll be approximately 2.5 hours long. No drains and no pain med balls to tote around my waist afterwards. (Hallelujah!) I will most likely spend a night in the hospital, given my challenges in the past with coming to and getting my system up and running.

What is the recovery process going to be like?
I have heard that the recovery from this surgery is easy compared to the first one. Talk about glorious news to hear! I'll wake up with a surgical bra on. I will be able to shower 2 days after surgery. I should expect to be out of commission for about a month. Same lifting restrictions as the first surgery for 4-6 weeks. Then gradual stretching and strengthening to rehabilitate. -->I'm already finding this to be a mental hurdle to overcome. Starting "over" with the arms and rehabilitating my range of motion and muscle power again.

What cup size will you be? 
While that's getting personal, I get it and am not afraid of sharing. The short answer is: I don't exactly know.

Longer answer: Early on, I let Dr. B know that I was hoping for smaller breasts than I had naturally (like a cup size smaller). Because I needed to have radiation soon after surgery, there was a finite amount of time in which we could expand and whatever I was expanded to - that was it. (There's no further expanding post-radiation.) So...I was stretched to what I could handle within that time frame and am trusting everyone in the operating room to decide on an implant size that fits in the pockets we've created for them and "goes with" my body size/shape.

Silicone or saline?
Not sure yet.

What should I expect to see?
The outward projection should be the same for both breasts. Dr. B will do his best to get them closer together (right now they seem like they're miles apart). I may still have concave areas to the side of my breast bone. I'll have more natural looking curves (right now, I could practically sit a coffee cup on the expanders - my profile is pretty humorous). I should expect to see breasts that about the size I am now or a bit smaller; not bigger.

Are you all done after this?
For me, yes, I am choosing to be "done" after this surgery. Right now, I don't find the elective additional procedures to be necessary. For those that are scratching their heads: additional procedures can include surgery to reconstruct nipples ('cause I don't have them), and medical tattooing to color the created nipples (a.k.a. tit tats!).

When is it going to happen?
July 31. This year.



July 16, 2012

Things Keep a-Changin'

Lately it's been a dreamy summer in that I'm able to do what I wanted to do last summer while undergoing chemo treatments. It feels wonderful to be gaining strength and having fun outings.

In the last couple of weeks:

We've gotten together with Ken, Kim, and Winn (my stepbro/wife/son) over a yummy dinner and ice cream. The cooling evening air was a perfect host for outdoor socializing in the summer time.
A picture perfect setting at Ken and Kim's.

We've hiked into the wild and gone camping again, too. This time, with a MUCH better tent; we didn't freeze at night.
Joshua in our tent.

And just when you think life is beginning to display an even keel and it might be smooth sailing...BAM! Mom slipped and broke her ankle. We'll find out more about what sort of treatment/recovery is in store for her at an orthopedic appointment today. Looks like we might have the "opportunity" to convalesce and rehabilitate together.  :(  &  :)
A little chocolate toast to mom's 1 year in Colorado.


June 2012
July 2011
Miyako (stepmom) came to town and managed to squeeze in a visit with us. Thanks for the visit, Miyako. And thanks to Ken and Kim for helping us all make it happen amidst the changed schedules as of late. We saw her a year to the date that she shaved her head in solidarity with me - just LOOK at the growth! Looking great, Miyako. You sure you don't just pull on your hair to get it longer?



Summer is cruisin' along - with its own interesting twists and turns!

July 13, 2012

Redwoods are Survivors, too!

Redwoods are B-I-G.

Give it up for the redwoods:
they're SUPERSTARS!
While in California, I learned more about my surroundings. One main area of discovery was about redwood trees. Sure, back in college, I'd driven a teensy purple Geo Metro through a huge redwood in Northern California and thought Wow! This is cool...but I really didn't pay the trees that much attention. This time around, it was all different.

Before I say anything further, here's some more "official" information about redwoods:
Redwoods are naturally resistant to insects, fungi, and fire because they are high in tannin and do not produce resin or pitch. Their thick, reddish, pithy bark also provides protection and insulation for the tree. Even a downed tree can survive. The blackened hollows you will see when you walk through the grove were caused by a fire in 1926, and are a testament to the trees' remarkable ability to survive.

These trees have shallow root systems that extend over one hundred feet from the base, intertwining with the roots of other redwoods. This increases their stability during strong winds and floods.

When was the fire?
Most of the fires were started by lightning strikes that hit the bases of trees during dry season.  Fire travels through the root system to ignite the bases of other trees.  The last big fire was in 1926.  It swept through the forest and continued almost reaching the ocean.  We know it was caused by human carelessness.  One theory states that an accident at an illegal whiskey still may have caused the fire.

Evidence of burned heartwood.
Why are some of the trees burned out on the inside?
These are called “goosepens” (the early settlers kept their geese in them!). When fire sweeps through the forest the duff and slash around the base of the trees burns hotter and longer, thereby finding a weak spot in the trunk and burning out the heartwood.  The bark itself has “tannins” which insulates the redwood, especially further up the tree.

Why are there so many small trees growing around older stumps?
When a tree dies and leaves a decomposing stump, other trees sprout around its base, sometimes creating what is called a “fairy ring” – several mature trees growing in a nearly perfect circle.
Even trees need TLC.
source: Armstrong Redwoods SNR site

Redwoods just keep livin'.
You see, things look different to me because my lenses have shifted. Part of the shift may be regular ol' age-related stuff; undoubtedly my experiences this past year have also made me "see" differently. I was literally in awe as mom and I hiked around and amongst these living giants. They're resilient and they have lived so long and through so much! It really is amazing that there are giant redwoods still standing; they were logged so freely in the 1800s and they've survived multiple fires that burned their heartwood.

Oh, how I'd like to have a conversation with some of these great giants. I see a commonality between me and the redwoods: burnt from the inside, yet we're still standing. I feel a sense of peace from this realization.

The Colonel Armstrong Tree is the oldest tree in the grove, estimated to be over 1,400 years old.
It is named after a lumberman who chose to preserve this portion of the park in the 1870s.