Focus on the Front End

There's been a post brewing inside me that hasn't come into being because I don't have the right words.  The words aren't there because the thoughts aren't fully formed yet either.  I have three children who are going to grow up living in this world whether I like it or not.  The world, I mean, whether or not I like the world.  I do like the world.  I think it is good.  God made some pretty cool stuff.  We've messed up a lot of it, but we've done a lot of good, too.  I don't agree with all of it, though.

I hope that my children never have to deal with cancers of their own.  If they do, I hope that it is so far in the future that an inconceivably benign treatment exists by that time.  What I would like more than that, though, is that cancer not be an issue.  Not for them or for anyone else.  Herein lies the crux of the post that I can't quite get together yet.

We (citizens of the world) spend a lot of time, energy, and money on finding a cure for cancer.  We absolutely should continue to do that because people are going to continue to get cancer and will need treatments.  All of these resources are going toward the back end of the disease - fixing what is already broken.  

What if we focused on the front end?  What if we gave as much time, energy, and money preventing the body from being broken in the first place?  This is a tangled subject, thus my impasse.

Stay tuned...

Genetics

A lot has happened during my blogosphere hiatus.  Perhaps sometime I'll write about our summer adventures, but not today.  This post is going to deal with the impact of knowing genetic information.  I'm not going to try to unpack the ethical or political aspects of the unraveling of the genetic code.  Instead I'm just going to chronicle the chain of events that has extended from knowing the results of genetic information.  We'll start with some backstory and move on to current events.

Shortly after Cathy's diagnosis she was genetically tested to determine if she carried the BRCA gene mutations.  When women as young as Cathy are diagnosed with cancer this is a relatively common diagnostic step and one that is helpful in determining a course of treatment.  It was determined that she is positive for the BRCA1 gene mutation.

This knowledge, along with the triple negative typing of the cancer meant that a bilateral mastectomy would be the best course of treatment to safeguard against recurrence.  It also meant that at some point having her ovaries and fallopian tubes removed would be a good idea because the BRCA1 gene mutation is also linked with an increased risk of ovarian cancer.

Gene mutations are often hereditary.  Cathy's parents were tested to determine if one of them was the transmitter.  We learned that Cathy's mom, Jayne, is positive for the BRCA1 mutation as well.  Jayne did a little more research on her family history and learned that her grandmother had died of a cancer that looked to have originated in her ovaries.  After much medical counseling, Jayne decided to take some preventative actions.

Jayne began with surgical removal of her ovaries and fallopian tubes.  Pathology indicated that there was cancer present in both tubes and in one ovary.  Fortunately, due to the timing of the surgery, no further treatment was necessary for Jayne.  Had she waited even a few more months to do the PREVENTATIVE surgery, her course of treatment would have been much more extensive.  If she had not had the surgery and waited until she was symptomatic the odds of successful treatment would have decreased greatly.  Wwwsshheww!

Jayne also had a prophylactic mastectomy to prevent occurrence in the breast.  In a few hours she is having a second surgery to clear up some complications with the first surgery.  Prayers for her would be appreciated, I'm sure! 

This past week, Cathy met with a gynecological oncologist to discuss future surgery.  Cathy will have her ovaries and tubes removed in the spring or summer as a preventative measure against ovarian cancer.  She has not decided if that surgery will include a hysterectomy, as well.  We will need to do some further reading about the roll of the uterus in BRCA related cancers and the long term effects of that surgery before she decides.

I can't speak about the ethics of genetic testing.  I didn't really even think about it when Cathy was tested.  At that time it was just another tool in the arsenal to fight the disease that she had.  I do know that the results of the genetic testing prompted a surgery that likely saved her mom's life.  I also know that prophylactic surgeries for Cathy and Jayne will take risks in the 80+% range down to single digits.  

People often ask if we will have our children tested, especially Clara.  My hope is that medical practice and the life practices of our society in general will change to a point that makes genetic testing unnecessary by the time it would be an issue for them.  However, when Clara or the boys reach an age when it would be an issue or their genes might be passed on to children of their own we will probably have to discuss that if we don't have cures or better insight into cancer prevention.

No News Is Good News

I was a young driver just before the days of cellphones.  In high school and college I drove long distances pretty frequently and I notoriously forgot to call my parents when I had arrived at my destination.  Doubtless, they were left to wonder if I was safe or dead along the road somewhere.  I know that my mindlessness caused them stress, but they would always say, "No news is good news."

The last four months have been a break from constantly thinking about cancer.  During that time I've thought about cancer frequently, but I needed to have some time that it wasn't at the forefront of my mind.  So I didn't write.  For me, writing meant that I was fighting.  I wanted needed to take a break from the fight and enjoy the life that God had given back to us.

All of you who love Cathy can assume that no news is good news.  She is cancer free, not dealing with major implant issues, and regaining strength!  Yoga has been an amazing therapy for Cathy.  She still suffers from some pretty painful arthritis, particularly in the hands/wrists and lower legs/feet.  Her psoriasis is still in high gear and we believe the two might be related.  No solutions for that right now, but yoga is the best way for her to feel better.

In general, things are good.  Clara is two today.  It gives some perspective on how long this fight has gone on.  She was 7 months at diagnosis.  My girls have been through a lot and inspire me daily.

Lots of Posts

If you haven't checked in with the blog in a while, scroll on down after you finish this one.  I've been busy today and placed three new posts below this one.  They were all rolling around in my head for a while and once I got a chance to write they poured out like the bottle of water I spilled yesterday.  There are some updates on Cathy, some interesting news about Cathy's mom, and some thoughts about genetics.  If you found this blog by accident while you were trolling around for pictures of Angelina Jolie's mastectomy, just keep on trolling.  There's none of that here.

Angelina Jolie

This week it’s been pretty difficult to look at any media outlet and not see Angelina Jolie’s story.  I first saw the story Tuesday morning in NY Times and Huffington Post.  By Friday it had made it to the cover of the Time and People magazines in our mailbox.  I have yet to read either of the articles in those magazines, but it’s obvious that her decision has sparked a lot of conversation in the medical community, as well as the community at large.

Thankfully, I haven’t seen a lot of conversation that is judgmental of her decision either positively or negatively.  It seems that much of the information has been just that – information.  The few articles that I’ve read have also contained good information.  These articles have been focused on the facts of genetic testing and the statistics that accompany the BRCA1 gene mutation.  Angelina Jolie wrote a NY Times op-ed about the reasoning behind her decision.  There have been some articles written containing descriptions of the process of her mastectomy and reconstruction.  The information in these articles has been completely in line with everything that I have learned and what Cathy has had to consider in her decision making process.

I’m thankful that judgment has not been leveled on this actress, at least in regard to the words that my eyes have seen.  Prophylactic surgery is an extremely personal decision that is based on a wide variety of variables.  Even the decision to have genetic testing done is a personal decision that meets a different ethical and moral array with every person who considers it.  Many of those ethical and moral considerations were discussed at length this fall as the unraveling of the genetic code broke in the news.

At some point the opinions about Angelina Jolie’s mastectomy will start to fly.  My guess is that those opinions will be common shortly after she makes a public appearance and people have the opportunity to “see the results”.  That’s unfortunate, but it’s also how our society and the media work.  In the meantime, I’m glad that there is awareness and conversation.  While BRCA genetic mutations pertain to a relatively small percentage of the population, awareness of their existence will save lives.

Serendipity

I’m new to the world of blogging, but I suppose it would be bad form to have two posts with the same title.  In a previous post I created the title “I Don’t Believe In Coincidence”.  That is still true and I would like to use that title again, but I'll refrain.  I’m not sure that serendipity is the correct word to describe my lack of belief in coincidence, but I’m also not sure there is one single word that can encapsulate that sentiment.  What I lack in vocabulary to describe my worldview can be compensated for by an example.

I’ll provide a short backstory so that readers don’t have to retrace their steps through a year of blogging.  As an early step in the diagnosis and development of a treatment plan for Cathy, genetic testing was done to determine if she was BRCA positive.  The results showed that she was positive for BRCA1 gene mutation and negative for BRCA2.  For Cathy, those test results meant that she would have a bilateral mastectomy with removal of all breast tissue to guard against the high likelihood of a recurrence of breast cancer.  It also meant that at some point in the future her ovaries would be removed because a mutation on the BRCA1 part of the genome is also connected to ovarian cancer.

Both of Cathy’s parents had genetic testing done, as well.  While spontaneous genetic mutations occur, it is most likely that her mutation was inherited.  As it turns out, Cathy’s mom carried the mutation and passed it on to Cathy.  Cathy’s mom has also been trying to develop her own plan for protecting herself against breast and ovarian cancer.  As a first step, Jayne had her ovaries and fallopian tubes removed in April. 

Pathology on that tissue revealed high grade, aggressive tumors in one ovary and in a fallopian tube.  The tumors were contained within the organs, meaning that no further treatment is necessary.  According to the doctor, the timing of her “prophylactic” surgery made her prognosis excellent.  Had the surgery been performed a month or two later, the cancer would have likely spread and required a much more extensive treatment plan.  This, my friends, is what we call serendipity or dodging a bullet - definitely not a coincidence.  

Jayne had remembered that her grandmother had died of some sort of cancer of the reproductive system, but didn’t really know more details.  She requested a copy of her grandmother’s death certificate, which revealed that the cause of death was ovarian cancer that had spread throughout her abdomen.

What does all of this mean for future decisions?  Jayne will most likely have a prophylactic mastectomy in the near future.  Cathy is working with our geneticist to balance the risk of ovarian cancer with the threat of bone loss that accompanies the removal of the ovaries.  The degree of bone loss is greater the earlier in life a woman has her ovaries removed.  Ideally, Cathy would keep her ovaries until she is 41-42.  Much learning and decision making to come…

We are often asked what this means for Clara?  Will we have her tested?  My answer to that has been the same since the unfortunate time we have had to beginning considering that topic.  Medicine is changing at an incredibly high rate of speed, particularly in the area of genetic implications in treatments.  It is my hope that by the time we need to consider that Clara should be protecting herself that a whole new realm of possibilities exist for diagnosis and treatment of genetic mutations.

Clear

During the last couple of weeks Cathy’s annoying symptoms kind of came to a head.  Her psoriasis was at it’s worst, her joints and bones were very painful (especially in the morning), she’s had upper respiratory symptoms, slight fever, headache, etc.  She stopped taking Accolate and called Dr. Drosick’s office.  He prescribed another antibiotic to take in addition to the one necessary for her drain and ordered a bone scan.  That bone scan order made us both nervous because he said it would show any bone cancer or arthritic development.  Cathy had that scan on Wednesday last week.  In turn, Thursday became a good day. 

By Thursday much of her joint pain had returned to normal, which means irritating, but tolerable.  On Thursday she had her drain removed.  The drain removal lifted her spirit greatly.  It was a painful drain, sutured in awkwardly and arranged in a way that she was constantly pulling and tugging on it by accident.  Her psoriasis began to improve a little.  Lastly, she got word that her scan was clear of cancer and arthritis.  A clear scan doesn’t solve the mysteries, but it eliminates some evil possibilities.  Currently, we are thinking that chemo is the main cause of the pains (the gift that keeps on giving) and that Accolate may have exacerbated that situation a little.

Cathy is still suffering from congestion, a slight fever, and a nagging cough, but is feeling much better.  These symptoms are after a run of two antibiotics.  This will be the next matter to resolve, but the rest is happiness right now.  Her facial expressions, body language, and energy level reflect the improvements in her condition.