Thursday, January 15, 2009

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...

Saturday, January 10, 2009

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!

Monday, January 5, 2009

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


Thursday, January 1, 2009

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

Wednesday, December 17, 2008

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.

Wednesday, December 3, 2008

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!

Friday, November 21, 2008

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).

Tuesday, November 18, 2008

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.

Friday, November 14, 2008

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 :)

Monday, November 10, 2008

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.

Monday, November 3, 2008

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



Sunday, November 2, 2008

Susan G. Komen Race For the Cure 2008

A beautiful day spent with beautiful people. Thank you :)






Thursday, October 30, 2008

Almost There

Halloween is tomorrow and marks 4 1/2 weeks of radiation treatment. Linda's radio oncologist calls her the poster child for radiation. Other than a general 'tan' in the affected areas, there is no tissue damage. No blisters or burns. No pain!

Only 2 more weeks to go and then that's it. Nothing else to do. No more treatments. I'm sure, after spending the past year actively fighting cancer, it will seem strange doing nothing. Unlike the majority of breast cancers (which are ER+ and/or PR+), triple negative breast cancers (ER-,PR-, Her2-) do not have any long term targeted therapies. It really is just wait and see. No Tamoxifen, no Aromasin, no Herceptin. Although there may not be any active treatment alternatives, there are plenty of passive treatments which include eating right, exercise and most importantly, just living life to the fullest.

This photo was taken last Halloween at our annual street Halloween party. That is pretty much how I looked from 1983 to 1992...not much of a stretch for me :)

What's strange to me is looking at us, 1 month or so before our diagnosis, and not having a clue what lay ahead of us. How our life could change from one day to the next. It is also weird to know that Linda had cancer in the photo (hey...quit staring at my wife's boobs!).

When you're young...you're invincible! When you're pushing 40...err...not so much. When your life is turned upside-down by cancer, everything takes on a 'temporary' feel, and I don't mean that in a bad way. That whole 'stop and smell the roses' nonsense begins to make sense. No, I'm not about to put up a motivational poster in my office, but I do find myself spending more time with the kids, more time cuddled up with Linda watching TV, and more time trying things I wouldn't usually do. How can that be a bad thing?

So tomorrow we will have the 2008 edition of our Halloween party, the kids will run amok in the neighborhood, the parents will enjoy a potluck dinner and we will all have a great time. Life is good.

Happy Halloween!

Tuesday, October 21, 2008

Race for the Cure

The whole family has signed up for the Race For The Cure 5K. Linda, myself and the kids will be hitting the streets on Sunday Nov 2nd to help raise money and awareness. We will be running for her local breast cancer support group team. If you'd like to sponsor us, shoot me an email at:

breast.cancer.sux@gmail.com

and I'll let you know how you can. It should prove to be a great day as we give back to the community and friends that have supported us over the past year.

Think Pink!

Wednesday, October 15, 2008

Getting our groove back

With less than 5 weeks left in Linda's treatment, things are going very well. Still some tingling in her hands and feet, some general muscle aches, some redness around the irradiated areas and she has some difficulty getting to sleep. Aside from that, our day to day routine is just that...routine. Work, kids, school, cub scouts, football, camping, Halloween decorations...ahhh the beauty of routine. You really don't miss it until it is gone.

Unlike my hometown, where camping is restricted to 3 months of the year, Texas offers camping 12 months of the year (although it is really too hot to enjoy camping in July & August). In years past, we have camped up to 22 times in a year, almost every other weekend. It is our family time free from life's distractions. Our youngest was camping at 6 weeks old. Camping is definitely our thing. The past year has only given us 1 opportunity and that was even limited because Linda had just finished her first chemo cycle. We booked camping for this weekend and I can't be more excited. Cool nights, campfires, hikes, smores and a cold beer for Dad. Oh yeah!

One thing I've learned over the past year is to not take my health for granted. I've been lucky (genetically or otherwise) this far, but I'm sure the next 40 years will be tougher than the last 40 years. So midway through Linda's treatment I started training. Training for what? Nothing in particular, just to be fit. It is my job, after all is said and done, to take care of my family. I can't do that if I can't take care of myself. 1 hour/day, 5 days/week is not that much but makes a huge difference to my mental and physical well-being. When Linda resumes her running, it'll be one more thing we can share and that's always a good thing.

An important change in me, at least psychologically, is the ability to concentrate at work once again. It is not there 100% yet, but at least I am not a zombie anymore, and as our company achieves more successes, I can feel the energy coming back. I have been blessed with a truly unique company and in particular, an incredible CEO who understands that a company is not simply a collection of people, but really an extended family. My extended family. Our extended family. I am surrounded by the best friends and colleagues anyone could ask for and I owe them a debt of gratitude for their understanding and compassion over the past year. Y'all rock!

Monday, October 6, 2008

Root of all evil?

Very interesting article about leading edge research on cancer stem cells from The Economist.

http://www.economist.com/science/displaystory.cfm?story_id=12202589

"Cancer may be caused by stem cells gone bad. If that proves to be correct, it should revolutionize treatment"

Radiation update

Linda's radiation is going well. The turn around time from when she leaves the house to when she returns is about 30 minutes. The actually irradiation takes mere seconds. Sure beats the day-long visits to the infusion room.

The Xeloda is giving her some mild tingling in her hands and feet (a known side-effect). Adding low-dose Xeloda isn't a standard practice yet (although it is in clinical trials) but if we get the benefit without any serious side effects, it's a worthwhile venture. There are different phases of a cell's division and the phase in which DNA is transfered is called the "S phase". Xeloda extends the "S phase" which increases the chances that a radiation particle will damage the cell DNA, causing the cell to self-destruct.

Linda is upbeat and her hair is finally starting to come back in. She is starting to make plans for a cruise next fall to Puerto Rico and the Virgin Islands. Making plans a year out is a great sign of her emotional recovery. Una cervesa por favor!

Friday, October 3, 2008

A typical atypical mole

A few months back, I suggested everyone go to their doctor and get their skin checked. Skin cancer is the most common form of cancer in the US. For once in my life, I decided to heed my own advice. I looked in my benefits package for the closest dermatologist and made an appointment. I think all my doctors have a last name that begins with A or B because they are the first ones in the list. I'm not too picky. I think most guys are like me. If I ever decide to become a doctor, I'm changing my name to Dr. Aaron Aardvark. That'll keep the patients rolling in.

The office happened to be just down the road from where I work and in a well-to-do neighborhood near the lake. I guess that's where dermatologists will find most of their revenue. At first I wondered if I had made a wise choice. It is my experience that a doctor's office usually has a wide assortment of health related pamphlets which adorn the waiting room tables and office walls. You know, the FAQ and self-diagnostic flyers for disease prevention etc. In this office, there wasn't a single skin cancer pamphlet. Not one. There were plenty of Botox(tm), Rejuviderm(tm) and skin bleaching promotional materials, but nothing 'health' related. I found that odd. They already had my $15 copay, so might as well go through with it right?

For the first time in my life, I was older than the doctor. My GP from when I grew up is still in practice in my hometown and is 75. He is older than my parents and they still go to him. I guess it's the 'older and wiser' thing that gives me some comfort. I guess that's just a symptom of getting older. Every second of every day, there are more people younger than you and less people older than you. Don't get me wrong, he's a good doctor, it's just my own personal hangup about being examined by Dr. Doogie Howser. And another thing. These days, I understand that when women go to see a male doctor, a female assistant/nurse is usually present in the room. So when a guy goes to see a guy doctor, is the assistant/nurse thing a common occurrence? I don't think that my doctor subscribed to the same 'lifestyle' that the real Doogie Howser did, so I'm not quite sure why the 20 something year old female nurse was in the room, but there she was. And there I was in my underwear.

As I was seated in the chair, the doctor started on my arm and worked his way around my upper body and head. He methodically dictated where the moles were and what they looked like. The nurse dutifully typed them into the laptop as he went. Then he asked me to stand-up so he could check my 'legs and buttocks'. My mind immediately raced to the morning's decision to put on any old pair of underwear. If I had known that a young nurse would be in the room with us, I'd have chosen some newer underwear with some elasticity to prop up my assets. But to my disappointment (and maybe her's too...who knows), I had chosen some war-torn pair out of the top drawer. I'm sure, as a guy, I had previously played this scenario out in my mind a few thousand times (Dear Penthouse Forum, I never thought it'd happen to me but....), but never did the scene end with 'hmmm...this mole here looks kind of strange'.

So there I was, standing in the doctor's office, my butt-crack showing, my 'junk' sadly doing a wholelotta nothing, and a doctor and nurse staring at my back-side ready to freeze the mole, shave it off, and send it to a lab for a biopsy. What the fuck!!!

As a product of the 70s and 80s, I never heard the word sun-screen as a kid. I never wore sun-screen and in fact, I used sun-tan lotion and once cooking-oil (yes, cooking oil) to intensify the effects of the sun. Sounds completely crazy now but that's just what we did back then. I worked as a landscaper most summers with no protection and no shirt. My yearly cycle would be to have a good burn early in summer, let all the skin peel off, then my tan would get darker and darker as the summer went on. I am the offspring of 2 British parents, so how I ended up with such a dark complexion is beyond me. With my long teenage hair and dark skin, my brothers would call me Pocahontas. I never considered myself a risk for skin cancer.

The doctor said it was an atypical mole. I asked if it was a typical atypical mole. He started talking about the ABCDs of melanoma and what to look for.

A = Asymmetry - mole is not symmetrical
B = Border - mole does not have a well-defined border
C = Color - mole has more than 1 color
D = Diameter - mole is bigger than 6mm

Mine was ABC but not D. It doesn't necessarily mean melanoma, but these things can lead to melanoma. After a long 7 days, the biopsy results were back. No cancer, no melanoma, just a mildly atypical mole (on a scale of mild, moderate and severe). He said "It's gone now, no risk, nothing else to do, just come and see me in a year". Whew!

We live in Texas and my kids are covered from head-to-toe when they go out. It just seems the sun is getting hotter and hotter and more dangerous. I'll get a mild burn after about 15 minutes. We aren't messing around.

So I urge you again, go get your skin checked out. You just never know. When I show up at my appointment next year however, I'm wearing a thong and doing some dumbbell curls in the parking lot!

Wednesday, October 1, 2008

Breast Cancer Awareness Month


Linda's port was removed last Friday. Woohoo! In the cancer community, this is a graduation of sorts and quite an achievement. It's nice not to have that reminder there.

To celebrate 'Breast Cancer Awareness Month', Linda starts radiation therapy today. She was tattooed on Monday with permanent marker. She also took her first low-dose of Xeloda this morning. This will continue for the next 6 1/2 weeks. Let's hope she tolerates it well. She's been itching to get back to running but unfortunately, in order to keep the radiation alignment in check, she can't lose any weight for the next month and a half. I have no doubt she'll be running the San Antonio Rock n Roll marathon next year!