All clear, Happy New Year!

Thank you for your prayers,

John & Linda

Merry bone scan and a happy CAT too

Monday is scan day as we try to squeeze in under 2009 deductibles.  I thought these were supposed to get easier as time went on, but they seem to be getting harder.

Please send your prayers, positive thoughts, whatever you've got.  Let's start 2010 with a clean bill of health!

L@@K - 2 Foobies - NIB - W@W

Everything is coming along nicely. We stopped in to see the surgeon yesterday and make sure everything is on track. It is. We have an appointment in early January to have the final implants put in.

During every visit to the office, I would always look over at the various sample implants stacked over on the counter.  Sometimes I would get up and play with them (I don't think 'fondle' is the right word here).  I just figured Linda would be getting a pair of those.  So, yesterday, as we discussed everything with the surgeon, he handed me one.  When I said "So Linda is going to be getting some just like this?"  he kind of chuckled.  He said "No, that's the 300ml size.  Go grab one of those big ones off the shelf, the 400ml ones".  I did.  I was liking where this was going.  "Now add that to the 300ml one you have in your other hand.  That's 700ml.  That about right.".  Shwing!

Did you know each foobie has a serial number? I guess they use it for recalls and such. Recently however, much to the dismay of her husband, they were used to identify the remains of a missing person.  Linda said "There, you can't murder me now".  I told her the implants wouldn't survive the wood-chipper.

Pink Glove Dance

More TNBC News...

Metformin demonstrates ability to kill cancer stem cells in mice

A positive turn of events for a "negative" tumor

Report Highlights Cancer Advances

University Hospitals begins trial to test vaccine for triple negative breast cancer 

Turmeric component curcumin inhibits breast cancer cell proliferation

A Day In The Life

Telemarketer:  Ma'am, I'm calling you today to raise money to help pay for mammograms for women who can't afford them.

Linda:  Yes, I donated $xxx.00 a few months back and since then, you've called me *every* week for another donation.

Telemarketer:  Yes ma'am.  We have 3 levels of donations.  $200, $100 and $75.  How much can we count on you for today ma'am?

Linda:  I donated my 2 boobs to breast cancer.  Is that not enough?

Telemarketer:  *silence*...how about $50?

Linda:  Put me on your DO NOT CALL list!

Telemarketer:  *click*

Ding! You are now free to play your cancer card

Linda's original cancer was staged as "locally advanced".  This meant that the cancer had advanced past the breast tissue and had spread to the lymph nodes under her left arm, but not beyond.  In treating the cancer, 19 lymph nodes were removed from that side for diagnostic and preventative reasons and the rest of the lymph nodes were irradiated.  This left her with a less-than-perfect lymphatic system on her upper left side.  I like to think of lymph nodes as gatekeepers which prevent infections from spreading throughout the body and keep them localized.  In addition to being extra cautious and trying to avoid injuries (burns, cuts, bruises) on her left arm, we need also be aware of lymphedema.

Lymphedema is a condition where, due to blockages or deficiencies in the lymph nodes, the body can not properly drain lymphatic fluid to/from the affected body part.  This can lead to pain and swelling in the limb and once it occurs, it has a tendency to become a chronic condition.  It is definitely something we want to avoid.  To date, Linda has had no symptoms *knocks on wood* of lymphedema but we are always weary of the potential.  Such a case arose on our recent trip to San Francisco.  In flight cabin pressure changes affects our bodies in odd ways and one of those is a movement of fluids to/from the extremities.  With Linda's compromised lymph nodes, it was suggested that she wear a compression sleeve and glove to minimize that flow of fluids in her arm.  She was fitted for both and we were ready to fly...almost.  Today's heightened airline security means that the metal detectors at the airport have been set to "extra-sensitive".  Sensitive enough that any metal such as a belt-loop, watch or perhaps a metal breast tissue expander port could set it off.  With doctors note in hand, we headed to the airport.  Turns out Linda's foobs didn't set off the machine.

If you've ever flown Southwest, you are familiar with their unassigned cattle call seating.  Basically, 24 hours prior to your flight you can check in online.  The earlier you check-in, the earlier you board and the better chance you have in getting an isle or window seat.  As a frequent AA passenger, I forgot about the mad online check-in rush that happens @ 23:59 before your flight.  Sadly, by the time I checked us in, we were in the last boarding group.  2 middle seats in 2 different rows was not how I wanted to start our romantic getaway and, with no kids in tow (remember: romantic getaway), we had little chance of family preboarding...but we did have the compression sleeve!  With the sleeve, glove, some fumbling for the boarding passes, and a little extra gravitas on Linda's part, we left the check-in counter with a medical preboard envelope.  I'm okay with the implications on my/our Karma.  It's not like we ousted some really sick kid from their seat, we just got to board first...but just in case, on our return, I made a donation to the Humane Society of Williamson County for some balance ;)

And by the way...San Francisco is an incredibly beautiful city and is the perfect place to fall in love again.  I recommend it highly.

.

Save it for a rainy day

We've all heard of that expression, and many of us live by it. What kind of bullshit advice is that? First off, why would I save for a rainy day? Wouldn't I want to save for a sunny day? Second, if it is considered a bad habit to procrastinate and put off things we DON'T want to do, why is it that we see value in putting off the things we DO want to, or saving money for our old age. If you are lucky enough to see 'old age', and believe me there are no guarantees, you may just find that you are too friggin' old to enjoy the things you always wanted to do. For every 75 year-old tennis playing grandma, I'll show you 10 bitter old men with bad knees or wives caring for their incapacitated husbands. Your golden years are NOW, not some mythical retirement age. Live it, enjoy it, now.

Is this a mid-life crisis? Crisis...no...mid-life...I can only hope. I turn 40 this week and that is very cool. I love my life and all those who share it with me, but I know all too well how fragile all this is. No regrets.

No news is good news

Foobie expanders are now full. Now it is just a waiting game until we get the Foobie implants.


You only get a finite set of sunrises on this earth so spend them with those people/things that make you happy, avoid the haters, try and make a difference and enjoy every day.

News you can use: Dispatches from the battlefront

• Metformin Selectively Targets Cancer Stem Cells, and Acts Together with Chemotherapy to Block Tumor Growth and Prolong Remission
• BSI-201 Enters Phase 3 in Metastatic Triple Negative Breast Cancer
• National Cancer Institute Research Identifies Unique Mechanism of Brostallicin's Anti-Tumor Effectiveness
• Breast Cancer Discovery: Vitamin A Derivative Normalizes Cell Growth
• A Cure For Breast Cancer Within 20 Years? Researcher Says It’s Likely
• Liberate the Breast Cancer Genes

My husband wants to know how big we can make these funbags?

That was Linda's quote today as she prepared to get the fourth fill of her expanders. No, she didn't actually say that to the doctor, she was just mocking me as we both got dressed this morning. This is what I have to put up with!

She is doing great with no complications. Every Tuesday she stops by the office for a quick visit and a boost of 60 ml per expander. She is up to 590ml but is still a ways off from her final goal. She doesn't know what that number is but will know once she gets there. Who am I to interfere?

I do have to remind her that the expanders are not the final implants and serve a totally different purpose. She knows, but is eager to see more realistic results. Their job is to stretch the pectoral muscles and surrounding tissue. They are flatter and they are as hard as a rock (filled with saline). Once they are filled, they will remain in place for three months while her body adjusts to the stretched tissue after which they are replaced with the final silicone implants. So as it is shaping up, it looks like Santa will be delayed a bit and will be showing up in the new year, just in time for a fresh new set of insurance deductibles and out-of-pocket maximums.

I must of searched the internet for 2-3 hours looking for the right picture to accompany this post. You'd be surprised what shows up when you search for 'huge melons'. As co-survivors, sometimes we must bear this burden silently.

October is Breast Cancer Awareness Month. Feel your boobies and get that yearly mammogram. Don't wait until you're 40, make that appointment tomorrow.

My View of Health Care – Part 1

Okay, first off, if you think I should pay more taxes because I earn more money, you can probably stop reading now. My goal here is not to change your opinion, but if you are a socialist at heart, what I have to say likely won't resonate with you, but read on if you must. Also, these are just my 'at-the-moment' opinions and do not reflect my family's opinions, nor my employer’s (in fact it may piss him off). The kids are in bed, my wife is entertaining friends and I have run out of celebrity sex tapes to jack-it to. This post is a result of all of the above.

I've lived in a socialized health care system in Canada (for 28 years) and I've lived in a privatized health care system in the US (for 12 years). I can speak from experience. I've tried to educate myself on 'The Obama' plan (no I can't cite chapter and verse) and looked at it from left-leaning opinions as well as what free-market libertarians think. Of course I have biases because I am human.

*** rant-on ***

Okay, you republicans/conservatives/neo-cons, you had your chance. You had control of Congress for more than enough time to effect change. You did nothing but advance your own political agendas. Now that health care is up for public debate, you muddy the waters with propaganda and stupid shit like 'Death Panels'. You get to sit in the corner and shut up. Your opinion doesn't count. Let the grown ups have a sensible conversation about this.

*** rant-off ***

The Canadian System

Depending on which side of the aisle you sit, the Canadian system is either a super successful model for the world or 3 steps from Communism (maybe 2 steps). As with most things, I think the answer lies somewhere in between.

Basically, everyone who pays income taxes throws their tax money into a big pile in the middle of the country. The federal government sets aside some of that ‘general fund’ for health care. Every province gets some of the money to manage their own provincial health care system. How much they get depends on population, voodoo and who's giving whom a reach around on Parliament Hill. This is the 'single payer system'. There is a single entity that pays for your health care, the government. They also legislate how much the doctors can charge for services and what is covered (say what? that doesn't sound right? that sounds like a conflict of interest doesn't it?).

As a Canadian (or resident, legal or otherwise), when you get sick, you go to your doctor. And by *your* doctor, I mean you have 1. Your GP is your primary care physician. You basically have to see him for everything. If you need further specialized care, he'll refer you to a specialist (not unlike a HMO). As the system exists right now, many people do not have a GP (sorry I don't have a quote on the national numbers but it is pretty common). There is a dearth of GPs and a waiting list to find one. You can always go to a clinic or the emergency room so just because you don't have a GP doesn't mean you won't get treated. You will never see an 'explanation of benefits' form or a bill. From a sore throat to cancer, you won't pay a cent. The doctor bills the government at an agreed upon price and the government pays him for his services. No one dies because they can’t afford health care, and no one goes broke because they get sick. It is a reasonable system, but it does have plenty of warts, some serious.

First off, it is pretty expensive. The average Canadian pays 45% if his income back in income taxes (I read this somewhere and know it is pretty close). I don't know how much of that goes to pay for health care, but I'm pretty sure it is a large chunk of it (a basic problem with the 'general fund' approach). In some provinces, it isn’t enough, so they started charging a 1% health premium (it wasn't a *tax* because the elected party promised no new taxes...douchebags!).

Secondly, all that money still doesn't cover it. Not everything is covered. Prescriptions are not covered at all. Your employer may choose to cover you for prescriptions, but that's between you, them, and a private plan. Dental care is not covered. I think teeth are an import part of your overall health but that seems to have slipped through the cracks (just ask the front row of a Rita McNeil concert). More and more treatments are being cut back as costs rise. The government doesn't dictate your treatment to your doctor, but they do dictate what (and how much) they'll pay for. You do the math.

Thirdly, the system is not competitive. Prices are fixed (likely artificially low). If the system worked, we would be graduating or importing doctors by the truckload. Great government health care for all! The fact is there is an extreme shortage of doctors, especially in the rural communities. Governments are closing hospitals everyday. Seriously. An aging population that is going to require more and more health services and we are cutting them back? There are fund raisers every year just to help the Children's Hospital get a few more bucks to help the kids. What the fuck? This is a model for the world?

Fourthly, did I mention the lack of doctors and money in the system? That leads to delays. We've all heard the 'it takes 6 months to get an MRI' quote. I'm not sure if that is accurate, but they definitely aren't next-day like they are in the US. When you wake up paralyzed on your right side, you want that MRI next-day, not next-month. With all the available doctors treating sore throats and cancers, that doesn't leave a lot of room for 'elective' surgery. No I'm not talking about boob jobs and liposuction, I'm talking about 'elective' hips replacements, 'elective' back surgery, and 'elective' knee replacement. The government has deemed those as 'elective'. So you, who just slipped a disc in your back and are bed ridden popping Oxycontin all day just to numb the pain, back of the line for you bub. We'll try to get you to see a specialist in 4 months, then maybe schedule surgery 6 months after that. I shit you not. That *is* the system. But you'll never receive a bill.

Fifthly (is that a word?), with all that hard to get healthcare, it should make for a great market place for entrepreneurs to fill in the gaps. Doctors could open their own clinics, maybe even charge a few bucks extra so you can get prompt service. WRONG! That would be illegal. If you have done well for yourself and have a few extra bucks in your pocket and want to get a mammogram tomorrow, it is off the US for you. You can't buy your own health care in Canada, that wouldn’t be very socialist now would it?

Sixthly (now I know that’s not a word), I’m going to stop railing on the Canadian health care system. It really isn’t all that bad, and it really isn’t all that good. I speak from experience and familial experience. I’ll share some personal stories.

• I lived in Canada until I was 28 and was pretty healthy the whole time. Aside from a few visits to get ‘the clap’ cleared up and UPIs (unidentified party injuries), I think I stepped in the doctor’s office maybe twice from age 14 to 28. As a child, we saw the doctor when we were sick. I even had a house call once. Never heard Dad complain about the rising cost of health care. Perfect. Life is good.
• My daughter was born in 1996 at an Ottawa Hospital. At the time, I had a good job with the RCMP. My employer provided supplemental insurance carried a ‘room upgrade’ for the recovery room. We were privileged to move from a 4-person ward to a 2 –person ward. Living large! During Linda’s recovery, the family of 6 we shared a room with decided to have a fucking candle-light prayer/séance on the floor of the ward to welcome their new offspring. Not quite the way I had envisioned my daughter's first day. No, it wasn’t a life-threatening event, but it was life-changing. I never looked at socialized medicine the same way again.
• I have a relative who had thyroid cancer. Caught it, cured it, great service.
• I have a relative who pays into the system and has seen a doctor maybe 3 times in 20 years. The system likes him.
• I have a relative who had severe back problems. I think it took him 18 months to get it operated on, and he went home with an Oxycontin addiction for his troubles.
• I have a relative who endured 6 months of back pain before seeing a specialist. He rode the morphine dragon for most of it.
• I have a relative who had throat cancer. She had surgery, chemo and radiation and is cured. The throat cancer was a direct result of 40 years of smoking. I love her with all my heart, but I wonder if she should bear some of the financial responsibility for her actions. All (tax paying) Canadians had to pay for her treatment and she paid none. I don’t think that is right, but I’m glad we still have her nonetheless.
• I have a relative who died from cancer. Diagnosed at stage 4. He was basically told there is nothing we can do for you, please go home and arrange your affairs. It turns out there was a 5-10% chance that an experimental treatment could have cured him. He was never given the option because the Canadian health care system can’t bear the burden/cost of something with a low chance of a ‘return on investment’. Tell that to the family he left behind.

Seventhly, I just don’t think the Canadian health care system can be sustained for a long time. I don’t have diagrams, charts or projections, but logic says we have an aging population, more people taking out of the system, less putting into it, and a non-competitive government environment that stifles innovation and change.

Believe me, I understand what it is to be Canadian (and still am), and the great ideals that entails. The system has great benefits and serious flaws. When trying to figure out what to do with the US health care system, we can’t look to Michael Moore for the truth, nor can we look to Bill O’Reilly. We need to look at real people and how health care affects their life. We all pay for it one way or another; we should demand that it be the best.

Okay, so I didn’t propose any solutions. That wasn’t my intent…yet. My next post will detail this poutine-eating, beaver-tail loving Canadian’s experience with Big Medicine.

Now I have to go work on my other blog post – ‘BJs Prevent Breast Cancer’.

See you soon.

...and the survey says?

No more chemo!

Dr H, who is very aggressive in her treatment and her 'expert' second opinion in Dallas, who is also aggressive, both concluded that the risks of more chemo outweigh the benefits.

The fact that:

the tumor was small
the tumor hadn't metastasized to the lymph nodes
the tumor hadn't spread to surrounding breast tissue (no vascular invasion)
all ductal breast tissue has been removed (on both sides)
the recurrent tumor had shown a tendency to stay in the breast (which is all gone now)
Linda had a clean bone scan
Linda had a clean CAT scan
Linda had a clean PET scan
and likely several other medical factors all led us to that decision.

So now, we can focus on her recovery and reconstruction and we can try and get back to where we were on July 1 of this year. Living life, loving life and appreciating all the beautiful things and people that surround us.

Another clear PET scan!

The title says it all. Words can't express the relief and joy I am feeling, so I won't even try.

Recovery

Linda is recovering very well. She still has limited use of her arms (to avoid stretching healing tissue/muscles) but other than that is up puttering around the house and visiting with friends. It truly amazes me how resilient the human body and spirit is to injury.

I've got to tell you though, it has been a tough week for me, more so mentally than physically. As strong as she has been, it *really* sucks watching her go through this. It is absolutely the best thing we can do to ensure the cancer won't come back, so it is well worth it.


Just look at her, as radiant as ever, and she's even pain-killer free here in this picture taken today. Incredible!

Our son referred to her as "Robot Mommy" as she had an inordinate number of tubes coming out of her chest, sides and abdomen when she came home. She had a fanny pack to carry around the pain pump and Jackson-Pratt drain bulbs. Quite the fashion statement. I removed her pain pump on Tuesday when it ran out, 2 drains were removed on Wednesday and the last 2 drains were removed on Friday. She is now back to having the standard number of orifices. In a couple weeks, she starts filling the expanders, which should take about 4-6 weeks to fill out completely. After that we wait 3 months while her muscles and tissue get used to the expanded size. After 3 months, the expanders are replaced with the final implants, or as they are known in the breast cancer community, foobies (for fake boobies). The results can be truly amazing.

We visited with Linda's oncologist on Friday. In contrast to what Dr H. had expected, it turns out the new cancer was biologically identical to the first cancer. It may not even be a 'new' cancer, just another site of the original tumor. It is still triple negative (ER-/PR-/Her2-), still aggressive (about a 7-8 on a scale of 3-9) , but was only about 1cm. Dr H. gave huge kudos to the radiologist who read the mammogram for catching the almost imperceptible tumor. Kudos indeed!

So what's next? Well, Dr. H wants another PET scan to get a baseline, and if that baseline proves clean, there is a very good chance that Linda will *not* have to do more chemo. Enough so that Dr H. put off getting the port put in. In this 20 month roller-coaster of good and shitty news, not having to endure chemo would definitely be one for the + column. Fingers and toes crossed.

This is a blog that another lady has been kind enough to share.

Breast Reconstruction with Expanders

It has been incredibly helpful for us. The fear of the unknown has been one of the hardest aspects of this journey. By documenting her mastectomy and reconstruction, Lianne has truly given us a gift that is immeasurable. Thank you.

Home sweet home

Linda came home Saturday afternoon and is on the mend. She even made it outside today for an hour but is back in bed now resting. That 100F Texas heat made short work of her.

Everything is going as planned and we're happy about that. Thank you for all your support.

Courage is the art of being the only one who knows you're scared to death

I am writing this post sitting next to Linda in our hospital room after a long 36 hours. The surgery went smoothly. Not only is the cancer gone (again), but we laid the groundwork for the next few months of recovery. As always, my superstar was unwavering in her courage.

I've told her many times how proud I am of her. Her response usally falls somewhere between "Well I don't really have a choice now do I?" and "What else am I going to do?". She's right. We don't have a choice. The alternative is simply not acceptable. What she may not realize is that she does have a choice in how she faces our 'non-option'. In this battle, I have only seen chinks in her armor on 2 occasions and they lasted 10 minutes at most. I know there is fear and uncertainty in there, but she has the courage to not let it define her fight. She has never once been a 'victim' in the 17 years I have known her. I only hope that when my 'test' comes, whatever it may be, I will have 10% of the strength she has shown.

I Googled quotes about courage from people much wiser than myself to help me express my thoughts. I came across the one in the title of this post attributed to Earl Wilson:

"Courage is the art of being the only one who knows you're scared to death."

I think that is a pretty insightful quote, but as I finish up this post, I need only look at my wife sleeping next to me for the very definition of courage.

Here we are...

Not much to say today. I've realized I'm a better raconteur than a color commentator. My mind is a mess right now so words of wisdom and insight are far and few between. I'm a bit scared of the next few days but more importantly, I am eager to get Linda through this. In all, the procedure should take about 6-7 hours with 2 days of 'intense' recovery followed by 3 weeks of at-home recovery. All things considered, Linda is in good spirits. She has received comfort from her 'sisters' who have been through this. It's tough, but nothing she can't handle, I'm sure of it. The other night, I asked her what she was doing, she said she was looking at some nice boobs on the computer. I replied that I've been looking at boobs on the computer for the past 20 years :)

Godspeed babe!

Life Goes On

As we wait for the 6th, I got to thinking about how this time is different than the first. The first time through, everything stopped on Dec 13. Life was put on hold while we fought the cancer. Batten down the hatches, dig in, fight and wait until we could declare victory and then get on with our lives. At least in my mind it was a case of understand it, categorize it, analyze it, solve it, move on. That's just how my brain is wired and for the most part, that process works very well for me. Unfortunately, fighting cancer is still very much a battle of trial, error and percentages. I have no doubt we will declare victory someday, it is just going to take longer than we had hoped. It has been said many times before that fighting cancer is not a sprint, it is a marathon. I understand that now more than ever.


As we navigate the future, this cancer may be riding shotgun for a bit, but it will no longer drive. Life is good :)

Git er done

This past Friday we had a visit with Linda's oncologist. Although we don't have a complete pathology on the tumor (that won't be available until surgery), Dr H. has a feeling that this will be a different type of cancer. She suspects this for a couple of reasons. One, it is far enough removed from the original site that this is most likely a *new* cancer, not a recurrence. Two, we bombarded the area with 2 full rounds of chemo and xeloda amplified radiation just 9 months ago. If this were the original type of tumor, it would take longer to recover from that beating. Hopefully this new tumor is E+ or P+ so we have some long term therapy options (Tamoxifen etc) open to us. Know thy enemy!

No matter if it is a recurrence or a new cancer, the breast tissue has proven itself to be problematic. I call them bad boobies, Linda calls them tainted ta-tas. In any case, the proper course of action is surgery followed by chemo (no more radiation as Linda has had her lifetime allotment). We won't know what type of chemo until after surgery and a full cellular analysis (oncotype assay) of the cancer.

We briefly interrupted our 6 days of camping to visit with the reconstruction surgeon yesterday. We discussed the pros and cons of the different types of procedures and pretty much settled on the one we had already decided upon. Unless the boss tells me otherwise, I won't go into the details of the procedure. (I'm pretty sure that if I needed an operation on my junk, I wouldn't want her blogging about the pros and cons either). Of course I'll answer any questions on an individual basis. This blog is not only about helping me but also helping others.

Surgery is scheduled for Thursday, Aug 6th (btw, never have your surgery on a Friday, statistically the worst day for mistakes). Linda is in great spirits and eager to tackle whatever is in front of her (I just follow in her wake). That means we have to cram the rest of summer into the next 3 weeks. I'm off to the Gulf of Mexico tomorrow with the guys for some deep sea fishing and maybe the odd beer. That'll be a welcome distraction. After that, the three Ss of a Central Texas summer await: Schlitterbahn, Seaworld and Six Flags!

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