Carpe Aestas!

We had a great Fourth of July weekend. It was quieter than usual but that's just fine. We waited until Sunday to tell the kids about the recurrence. Considering the tears, sadness and fear we experienced this first time around (all of us included), I wasn't looking forward to it. They took the news extremely well and only had a couple questions. Kids are far more resilient than we give them credit for. Honestly, my son was more interested in the episode of iCarly playing in the family room. Their handling of the situation is a testament to Linda's strength and courage during her previous treatments. Aside from a lack of hair and a few down days every 3 weeks, their Mommy was engaged full time in their lives. I don't expect the next few months will prove any different.

We will be meeting with Linda's oncologist this week and will have a better understanding of the recurrence's profile (hormone receptor status and cell histology etc). Linda has been busy today setting up appointments to interview surgeons. Each surgeon has their own preferred technique and each technique has its pros and cons...and here I thought we were experts in breast cancer...no one told me there was a Vol. 2.

Once again we were touched by all the words of encouragement from family and friends. It took me 6 months to start writing about this journey the first time through and only 1 day to post an update this time. This blog is an important part of my therapy. Your prayers and positives thoughts really do make a difference in our lives. Thank you.

There is a good chance we won't be in active treatment until later this month which gives us an opportunity to enjoy more of this great summer. Carpe Aestas!

Another lump in the road

After a suspect mammogram on Monday and a fine needle biopsy on Wednesday, we were informed yesterday that the cancer is back, right next to the site of the original tumor. CT and bone scans indicate the cancer has not spread beyond her breast which is incredibly good news.

Surgery and most likely more chemo are in our very near future, but as Linda said to the radiologist, "This ain't my first rodeo". God I love her.

Grace and Dignity

Summer is in full swing here and we are busily making up for the lost summer of 2008. We just got back from a fantastic week on South Padre Island on the Gulf coast of Texas. Good times!



I've noticed subtle changes in Linda's attitude over the past year. From trying new food at a restaurant to attempting to dive to the bottom of a pool to taking charge in situations where should would normally of laid back, she is in charge of her life and enjoying it, really enjoying it, moreso than ever. I am so proud of her. Physically, I don't think there are any long lasting symptoms of surgery and/or chemo. Emotionally, I think she is (we are) well on her way to recovery, however reminders of how fragile all this is are never too far away...

It seems like an eternity, yet it was only 18 months ago. January 2nd 2008 was Linda's first chemo, only 3 weeks after the shock of her diagnosis. We had scoured the internet and read every horror story regarding side-effects of chemo. We had gone through chemo "training" at Texas Oncology. We had signed every liability waiver known to mankind. Linda sat in the chemo chair and I was huddled by her side listening intently to the infusion nurse tell us what to expect. Only Linda knows how she felt, but I can tell you, my fear and apprehension was overwhelming. I was scared shitless. Across from us sat a young lady, about Linda's age, who was dressed very well. She had brownish-red hair, pretty make-up and a pleasant smile. She busied herself working on a laptop while the chemo rushed through her veins. She never knew it, but she became an incredible source of courage for us that day. I knew we would be okay.

Over time, Linda and her became friends. She attended the same young survivor support group. A strange thing about "cancer friends" is that you tend to identify them by their disease. "You know Linda, she's triple negative, stage IIB, node positive and Karen, she's E+P+, stage I, no nodes". I *know* these women are so much more than that, but human nature is to identify with that which you have in common. She was Becky, Her2neu+, stage IV. It turns out her beautiful hair was a wig and she was battling a very aggressive form of breast cancer with the newest drugs available, some still in the clinical trials stages. To look at her you'd never know.

I was in Seattle a couple weeks ago on business and got an early morning call from Linda. Becky had passed away. The news came out of nowhere and messed me up. I still tear up as I type this. Becky is the only woman I have ever known to lose her fight and it brought back a whole bunch of emotions I had conveniently tucked away out of mind. Linda doesn't talk about it much but I know it bothers her. She wears her emotions differently than me.

Becky, the grace and dignity you showed in the face of such adversity will stay with me forever. You made the world a lot less scarier for us and for that I am eternally grateful.

Thank you and God bless,
John

One Year Survivor

Yes, it has been a while, but for good reason. There is this thing called "life" which seems to be getting in the way of all my efforts to update this blog. Sure, our fight with breast cancer is never far from thought, but of late, it hasn't been center stage. I feel like I need to apologize for not writing sooner, but I'm sure you'll understand why I don't feel so bad.

Triple Negative Breast Cancer has a different recurrence profile than more typical hormone positive cancers. With TNBC, we are at a higher risk of recurrence within the first 3 years. From 3 to 5 years, TNBC has about the same odds as a hormone positive cancer, and then after 5 years, the odds drop off considerably and are statistically insignificant. In a nutshell, if it is going to come back at all, it will be in the first 3 years. With that understanding, you can appreciate how glad we were when Linda's oncologist pronounced her a "One Year" survivor. We weren't quite sure when that milestone was, considering she went through 2 regimens of chemotherapy and radiation from Jan 2008 to Nov 2008. Dr H. put it at the end of Linda's first round, in April of '08. That was a pleasant surprise.

While Linda was cleaning up the other day, she came across a list she had made in April of 08 titled "Things To Do: Summer 2008". Her and the kids had made a list of summer activities in anticipation of her being done chemo. Well, if you've been following this blog, you know that Linda had to endure another 12 doses of chemo throughout the summer and the majority of the list went unfulfilled (Seaworld, Six Flags, Schiltterbahn). It really was an awful summer for our family. That same list is now on our fridge! So, when presented with a choice of dates for her next bone and CT scans, Linda purposefully scheduled them after our upcoming vacation to South Padre Island. Her words to Dr. H..."You're not ruining this summer!".


Keeping a healthy immune system is probably the most important thing you can do to keep cancer away, or even showing up in the first place. That means eating right and exercising.

Linda is taking the following supplements:

• Viactiv (calcium)
• Turmeric Root Extract
• Vegetable Carotenoids (free radical protection) lutein, lycopene, broccoli, spinach, tomato, kale, cabbage, brussel sprouts
• CoQ10 (heart health)
• IP6 w/ Inosotil (anti-oxidant, fiber)
• Multi vitamin
• Brassica Tea (SGS, Brocolli) developed by Johns Hopkins
• Green Tea (Japanese)

and for exercise, Linda joined a gym and does the following (in some combination) every week:

• Zumba / Total Body (2hrs)
• Walk/Run (1 hr)
• Body Pump / Step Interval (2 hrs)
• Pilates (1 hr)
• Step / Body Pump (2hrs)
• RPM (spinning) (1 hr)
• Yoga (1 hr)
  

I think the thing she likes most about the exercise is that they are group activities. She has some great instructors and has friends that participate as well. Mentally and physically, she is doing all the right things. She is a tough old broad...strike that...she is my tough old broad!

I'm not sure when I'll update the blog next, but I am not gone, just living. If you have any questions or comments, please write. Maybe I can convince Linda to write a guest blog post :)

John

Please stand by....

...it has been a while but I'll try and get post done this week and update y'all. Thanks for reading!

Triple Negative Breast Cancer Foundation

http://www.tnbcfoundation.org/index.html

News you can use

Just a few articles I came across this weekend.

GRB7 overexpression and how it relates to TNBC

Extra Virgin Olive Oil

Tumeric

Book Learnin'

There was a time in my life when I didn't read at all for pleasure. I refer to that period of my life as "High School". Even less than reading for pleasure, I rarely read the mountain of garbage that the school system forced on me, hence my extended high school career. I'm not sure if I suffered from a reading disorder or a disdain of being told what I should enjoy reading. Shakespeare? Really? You can't possible tell me a) I should be enjoying this and b) this will somehow provide me some long term value. I think it was a combination of both as I'm pretty sure words aren't supposed to bounce around on the page, but I've learned to deal with it over the years. I am also the product of a French Immersion education that has made me illiterate in 2 languages. Boy those 11 years of French are really paying dividends in Central Texas aren't they. My early exposure to reading had made me none-too-keen on all that book learnin'.

Later, in my late teens and early 20s, I had a girlfriend who was really into true crime novels. A natural osmosis occurred during that time and I soon found myself reading those books too. I was reading maybe 2 books a week and by the time our relationship ended, I had amassed quite the collection of serial killer paperbacks from Ted Bundy to John Wayne Gacy. I thoroughly enjoyed reading at that point in my life. Twisted? Morbid? Sure, whatever, but who the hell isn't fucked up when they are 20 anyways (and for all you criminal profilers out there, no I don't masturbate to fire and torture animals...I love animals)

Along comes college where I was trained to read like a technician. Determine facts, isolate declarative sentences, categorize, store, retrieve, and repeat. Definitely left brain activities. I'm sure I learned something along the way, but much of that was purged when I left the exam hall.

The real irony in all this was that my career path would be set not by my understanding of finite state machines or recursive descent parsers but rather my fascination with true crime, more specifically serial crime. My college buddy was working his internship with the Royal Canadian Mounted Police and mentioned to his Sergeant that I was working a mind-numbing co-op placement with Revenue Canada, and because of my interest in serial killers, that I may be a suitable hire to implement an up and coming crime database. That moment, coupled with the proper alignment of the stars and Linda's (my girlfriend at the time) ability to support my sorry ass both emotionally and financially led to my current career.

That was over 15 years ago. How much do I read for pleasure today? Zero. Who the hell has time to read? I have audio books in the car, 500 channels of TV, and reams of internet minutiae (my secret shame is an affection for tabloid magazines...People, US, OK...all that crap...yes I put it out there...cast your stones). Despite being inundated with information, the vast majority of that stuff doesn't seem to stick. I can remember the vivid detail of an Ann Rule crime scene description that I read 20 years ago yet I can't even remember what I watched on Nova on Tuesday (seriously...and it's friggin' Wednesday today!). There is something about the printed page that makes it stick. A friend of mine, who is about 10 years older, once told me "John, there comes a time when you'll have forgotten more shit than you remember". Wiser words were never spoken.

So what does this have to do with breast cancer? Absolutely nothing, and believe me, it feels great not to write about it. I picked up a book tonight and read 1/4 the way through it. I probably could of gone the audio book route, but I figured I'd see if I could stimulate some of those neglected neurons. After about 2 hours, those words on the page were jumping like crazy and I had to put it down. It's a start and we'll see where it goes. Good book.

I still can't sleep so here I am writing this blog at 2am...had I read that much in high school, I'd be fast asleep.

Sleep, sleep, my kingdom for some sleep

If sleeping was an Olympic sport, I'd definitely hold several medals. I can fall asleep watching a movie, I can fall asleep at the movies, I can sleep for 1 hour, I can sleep for 18 hours, I can drink coffee before bed without issue and I can stay up for 48 hours if needed. If there is one thing in life with which I am truly gifted, it is the ability to sleep. One of nature's small miracles is a 2 hour snooze on a Saturday afternoon. I list napping among my favorite hobbies. I LOVE sleeping.

Throughout high school, I'd often spend my afternoons in detention as I couldn't seem to catch the 8am school bus. Throughout college, an 8am class surely meant an F for that course. I have crafted my career in such a way that my position allows me to come to work at 10am. For better or worse, my life has been shaped by my ability to sleep (and perhaps my inability to wake up). I am perfectly fine with that.

So what is the problem? I can't fucking sleep!!!

This is a recent occurrence but it is driving me crazy. My mind is a complete mess. I can't concentrate worth a shit. My OCD tendencies are accentuated. I haven't slept for more than 1 hour in a row for the past 3 weeks. My nights are filled with restless fits, crazy dreams, and sleep walking (I have slept walk/talked since I was a kid but it is now a nightly occurrence). I've tried green tea, melatonin, beer, and some stronger stuff. Nothing works. I suck at sleeping.

Nothing has really changed in my routine. The day-to-day stresses at work are about the same. I'm not doing anything differently than I have in the past. If anything, I have less stress in my life, considering the stresses of the past year. If I were to put on my Jr. Psychologist hat, is this some sort of post-traumatic-stress reaction? Who the hell knows? Maybe it'll clear up on its own, maybe not. All I know is that I *really* want a good night's sleep.

In all seriousness, if you have any thoughts on this subject, I would really like to hear from you. If you've had sleep issues, how did you deal with them? Did you figure out why you were having them? Were they stress related (conscious or subconscious)?

Psychologists....discuss...

Gene that makes breast cancer spread is found

Discovery gives researchers a ‘real shot’ at making drug to stop metastasis

http://www.sciencedaily.com/releases/2009/01/090105131216.htm

Wow, this is huge!

A vaccine for Triple Negative Breast Cancer?

"This is an important study because there has traditionally been nothing to offer women with triple negative breast cancer beyond standard therapy," says Stanton Gerson, MD, Director of the Ireland Cancer Center. "This vaccine trial has the potential to lay the groundwork for a new standard of care for women with this aggressive form of breast cancer."

http://www.medicalnewstoday.com/articles/132965.php

Happy New Year

I won't soon forget 2008 but I sure am glad to see 2009. 2008 was the hardest year of my life by far and I'm sure Linda would concur. We book-ended the year with Linda's first chemo on January 2, 2008 and a clean mammogram (woohoo) on Dec 31, 2008 (gotta cram in those appointments under 2008 deductibles). We also ended 2008 with 6 days in the most magical place on earth....Disneyworld!


We have been to Disney several times in the past, but this time was particularily special. Next to Christmas, nothing gets Linda jazzed up like a family trip to Disneyworld. We had a really great time. I made a concerted effort to not stress out over the $4 cokes and $100+ meals and just enjoy our time together. I've always been a pretty easy going guy, but my short fuse temper usually gets the best of me. There isn't a better place to test those limits than a capacity crowd at Magic Kingdom on Christmas Day! By and large, I think my new found outlook on life helped me make it one of the most enjoyable family trips we've had.

Linda and I have a 1/2 marathon planned for April and that's our short term goal for 2009. That will give us somewhere healthy to focus our energies. Aside from that, a cancer-free 2009 and beyond would be nice too!

May 2009 bring you peace, love, and contentment.

John

One Year Later

Life has been crazy busy for us over the past month with work, kids and preparing for our Christmas vacation. I haven't had much time to keep this blog updated. I suspected that would happen, but not so fast. We really are getting back to where we were a year ago (all things considered). That being said, the thought that 'all this' could go away is never far from my mind. Instead of that being a negative thing, I choose to use that as a positive motivator and appreciate everything we do have and how truly blessed we are. We are blessed to have each other, we are blessed to have our kids, we are blessed to have our health (again), we are blessed to have fantastic and supportive family and friends both in our professional and personal lives. I am blessed to have found people through this blog that I wouldn't otherwise have had the opportunity to meet. Blessed by whom/what? I haven't figured that one out yet. I'm working on it, but in the mean time, I don't question...I just accept.



Last Saturday was Dec 13, one year from our diagnosis. We used the opportunity to celebrate with all those who have helped us this past year. We hosted a party and enjoyed the company of our friends until the late hours of the morning. In the depths of treatment, it was hard to imagine what Dec 13 2008 would look like. We couldn't have asked for a better anniversary.

We are taking a well deserved vacation over the Christmas holidays and there is a very good chance I won't be updating this blog until the New Year. So, let me take this opportunity to wish everyone a happy and safe holiday. Merry Christmas to my Christian friends, Happy Hanukkah to my Jewish friends, Happy Diwali to my Hindu friends, Happy Festivus to my Seinfeld friends, and Happy Holidays to all. Everyone, regardless of their belief system, can enjoy the warmth that family and friends bring this time of year. To my old friends with whom I've reconnected over the past year, to the new friends I have made via this blog, and everyone in between...a sincere thank you.

3 month check up

For the time being, part of our recovery process is being reminded every 3 months that we are cancer survivors. That reminder comes in the form of a combination of cat/pet/bone/brain/mri scans and/or mammograms. Over time, these scans will become less frequent and hopefully less nerve racking, but for the time being, they are often and stressful.

This week I am in Seattle on business and Linda had a cat and bone scan. As real-life begins again for us, scans and doctor appointments are not always 'convenient', as was this case this week. Christmas came a bit early this year and I received the good news today. All clear...again!

I really wished I could have been there this week for her but, at least from my point of view, cancer is becoming less a focus of our life and more an aspect of it. I think that is healthy. Our circumstances and mindset from last Christmas as compared to this Christmas could not be further apart.

Congratulations babe...you kick ass!

A strange feeling

I don't have much today. No story, no insight, and no words of wisdom...and that's kind of what I'm posting about. I've had a strange feeling of emptiness this week. We've been fighting this for 11 months straight, without any real break. It has defined (and redefined) our life for all of 2008. Almost every emotion and every thought has been about cancer. Most every conversation with family, friends and acquaintances starts with "How is Linda doing?". The highest point and lowest point of 2008 has been about cancer....and now we are done.

I've been looking forward to this week since last December, yet I feel a void. It is truly an odd feeling. I can't quite explain it. For the past year, I've had somewhere to direct all my energy. Focus on the cancer, focus on Linda, entertain the kids so they don't have to deal with it, write a blog entry. Now, although we will never be the same as we were on Dec 12, we have to go back to living. What the hell was that like? I can hardly remember. This cancer has made me a better person, made my family stronger, and made me love Linda more than you can understand. Without the cancer in our lives, will I fall back on old habits? Being an unappreciative asshole. I don't know if I even like 'pre-cancer John'. I'm actually kind of scared.

p.s. - Cancer, if are reading this, this is in no way an invitation back into our lives. Fuck you and thank you (if that makes sense).

A slice of humble pie

After all Linda has been through these past 11 months, at the first opportunity post-treatment, she got up at 5:15am and ran/walked 3 miles with her friend. No complaints. I, on the other hand, have been sitting on my ass for the past months complaining of a chest cold, shin splints, and/or a bum foot, pretty much any reason to not run. Needless to say I ran this morning. Thanks for the inspiration.

Step out of the vehicle sir

Today, 11/14/2008, we're done. The last radiation treatment was @ 8:45 this morning and the staff at Texas Oncology had a small celebration for Linda. Very cool. They are almost like family to Linda. I met Linda at Starbucks afterwards for a celebratory coffee before heading to work.

For some reason, I decided to take a different way to work. My usual commute has slowly been infiltrated by traffic lights. I'm sure there is a new one every couple of months. Damn suburban sprawl! The alternative route is longer, but only presents 1 traffic light. You can really fly along 1431. With the sunroof open and Metallica blasting, I cruised along at what some may consider an excessive speed (and what TxDOT definitely does consider excessive). Just as I crested a hill, I saw the telltale sign of Texas State Trooper black and white heading in the opposite direction. Ease off the gas...eyes in the rear view...wait...wait...shit!

Really? Linda's last day of treatment. What a way to sully a great day.

Mr. State Trooper was really playing the part. Mirrored sunglasses and all, although they were more modern than the stereotypical aviator style ones. Intimidating nonetheless. "License and Insurance please". "Step out of the vehicle sir". What the hell...for a speeding ticket? This can't be good.

For once in my life, all my tags, license, and insurance were up to date. Just give me my ticket and I'll be on my way. My inspection sticker was due to expire this month. The jackass who did my state inspection last November put the "11" on backwards, so it jumped out to the officer. As he looked closer, it seems the serial number was garbled. He ran the number back in his cruiser and after about 15 minutes, came back and said the serial number was invalid and that I was in possession of a forged permit. "I'll need to call in my corporal to see how to handle this". Mother %&@^%%#$^&!^. He informed me that with the new emissions testing here in Texas, there are A LOT of forged stickers.

Meanwhile, I sat on the guardrail along 1431 as everyone drove by and checked me out. 2 cruisers were now behind my car, so there was likely extra oogling on behalf of the passers by. Fantastic! Judgmental bastards!

"Sir, we're going to need to issue you a citation". This is getting worse by the minute. I rolled my eyes. "Hold on sir...we believe you, but we need to create a paper trail so that we can prosecute the person who made the counterfeit sticker. You'll just need to subpoena me in court and we'll get this all sorted out". Court? Subpoena? Arrrggg! I wondered for a moment if they'd shoot me if I ran across the field into the trees. Wait a sec...this is Williamson County...first they'd taze me, then they'd shoot me, then they'd taze me again for good measure. Better stay put.

As they peeled off the sticker for evidence, they looked at each other and smiled. "Sir...come here please". Apparently the Jiffy Lube jackass who affixed my sticker didn't scrape off the old one entirely, and left a bit of the old serial number, which overlayed perfectly with the new one. The sticker was good after all, although I was now in possession of a valid, but decimated sticker. I needed a new one this month anyway.

Corporal: Did you write him up yet?
Constable: Yes
Corporal: 3 or a 6?
Constable: 6
Corporal: Make it a 3
Constable: Yes sir

Cool. I'm not sure what 3 or 6 meant yet, but 3 has to be better than 6 right? Were they going to knock some mileage off my speeding ticket? Sweet. This is getting better.

Turns out 6 is a ticket and a 3 is a warning. As an act of good faith for keeping me for a 1/2 hour, they just gave me a warning citation for my speeding. No ticket, no court, AND I didn't have to blow anyone to get out of it! This is back to being a great day!

I tend to be a bit more aware of my karama these days. Was this the scales of fate tilting on my side as a correction for the past year? Or was it another test...do I need to pay this one back? I guess I'll never know for sure where my cosmic tally count sits, but if I try to be a good-egg most of the time, that can't be a bad thing can it?

Linda, I am so proud of you. You are stronger than I ever imagined and you amaze me every day. I will rub your head, bald or otherwise, forever :)

A Moment In Time

I had one of those moments this weekend. For the 8th year in a row, we went camping at Granger Lake for my birthday. It was fantastic. Linda was full of energy and felt great. It almost felt as if the last year hadn't happened at all.

That moment. As the morning sun began to warm the day, we sat on the beach while the kids played at the water's edge. It wasn't hot, it wasn't cold. The dogs ran up and down the beach sniffing everything they could. We had camped here many times, and walked that beach more times than I can remember, but this time was different. I looked over at Linda and she smiled, watching the kids search for fossils and shells. It was absolute contentment, something I hadn't seen from her in a while. I closed my eyes and burned that image into my brain. No matter what life has in store for us, nothing can take that moment away from me. I know she felt it too. We made the weekend last as long as possible. Neither of us wanted to leave.


It is Monday morning and Linda starts her last week of radiation today. This week is all about the boob. Her neck and underarm are done so this week they 'blast' the site of the original tumor. Good riddance! As far as the numbers go, we have a 75% chance of never seeing the cancer again. In Vegas, those are fantastic odds. You can play those odds all night long and always come out a winner. When you are fighting for your life, anything less than 100% is hard to accept, but that's just how these things work. Regardless, that moment in time on the beach will be mine forever.

New Appreciation of Triple Negative Disease

A great article regarding the current understanding of Triple Negative Breast Cancer and how to best treat it. If your breast cancer has been classified as ER-, PR- and Her2- (about 15% or all breast breast cancers are TN), then this article is a must read.

"Marina Cazzaniga and her colleagues at Treviglio Hospital, Italy found in the NORA study contrary to other observations, that triple negative patients did not have worse prognosis, in terms of disease-free (DFS) or overall survival (OS), than others in the total cohort of 3515 patients treated in 77 cancer centers in Italy from to 2000 to 2003"

21,000+ turn downtown Austin into a sea of pink

http://news8austin.com/content/top_stories/default.asp?ArID=223459