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.

Brave

Yesterday Cathy made her first long public excursion without any headgear.  While her hair is a couple of inches long, the coverage is not as complete as prior to chemotherapy.  I'm sure it made her feel self conscious, even at church, where everyone knows her and loves her.  She's in a tough transitional phase.  When all of your hair is gone, people (strangers) assume there's chemo or some other story that engenders some sympathy.  When your hair is full and normal, people either don't notice it or comment on it's beauty.  When your hair is growing in from being gone people don't know what to think. This is somewhat of an issue for men, but it's a whole different story for women.  There's a whole cultural context issue here that doesn't need to be discussed - why it's different for men than women.  The bottom line is that my sweet wife is really brave and I love her.  Nothing about this last year has been easy for her, physically, emotionally, or mentally.  She takes it in stride and looks for whatever is next.

If you are one who prays, Cathy is feeling a little under the weather and is in need of some healing.  We don't know if it is a cold, allergies, sinus infection, or what.  She's just feeling generally rotten - the kind of rotten that needs soup, tea, a shoulder rub, and some sleep.  More than any of that, prayers will help.

Blessings to you all.

Fiddlesticks

Yesterday, I took Cathy to Jewish Hospital, across the street from Dr. Butterfield's office, to have a drain re-placed.  The redness from the apparent infection had improved, but with an ultrasound the radiologist was able to determine that there was enough fluid present to require a drain.  When the radiologist placed the drain the fluid pressure caused the fluid to squirt out a bit.  Since then, there has been a moderate flow, slightly greater than just before Cathy's first drain was removed.

It seems this is a fairly common occurrence.  The radiologist said he did three of them last week on reconstruction patients.  Cathy felt nearly instant relief from the pressure, but now has a little bit of pain from being fussed with.  She will probably have this drain removed Thursday or Monday.  There isn't much fluid flowing, but it's nice to know that it's going somewhere and not just accumulating.  

After the drain was placed we went over to Dr. Butterfield's office to have a Jackson-Pratt ball put on the end of the drain tube.  The JP ball provides the negative pressure necessary to gently draw the fluid out of Cathy's body.  The JP ball holds about 80 ml of fluid.  The most that I've ever seen Cathy put in a JP ball, right after her mastectomy was about 40 ml.  All these numbers will give you perspective on the hilarity of why we went to have the JP ball put on the end of her tube.  Jewish only uses drains with bags and a super long tube.  Cathy left Jewish with a tube so long it went down to her knee, came back up and looped around into her pocket before connecting to, get this, a 600 ml bag. Needless to say, this setup was a little cumbersome.  Now she has a tube that is about 8 inches long, connects to the little JP ball, and clips neatly to her bra.

She's doing well.  There was a short bout of frustration, but in typical Cathy style, she powered through it and is her normal, bright, cheerful, determined self.  I'm amazed by my wife.

Symmetry, Colors, and The Gift That Keeps On Giving

Symmetry
Cathy is pleased to be symmetrical after a few months of asymmetry and bunched up shirts.  Her surgery follow up appointment went well.  She got rid of her drain, had some sutures removed, and got answers to a few questions.  We're continuing to pray for good healing, comfort, and a favorable result this time around.

Colors
Some interesting colors have appeared on Cathy's chest.  Her predominant skin tone is a jaundiced yellow, which doesn't worry us too much.  Yellow could either be old bruising or the persistence of betadine that is too stubborn to wash away.  Below her right breast there is a bit of redness that seems to be growing and darkening, but it's happening so slowly that it's difficult to tell if it's really happening.  It isn't warmer to the touch than the rest of her chest, nor does she have a fever.  Those are two good signs.  Hopefully, that means it's just bruising and the healing process.  She also has a little bluish, green dot that we hope is not anything significant.  Cathy is going to call Dr. Butterfield tomorrow to see if she can get it checked out.

The Gift That Keeps On Giving
Like Clark Griswold's bogus Jelly of the Month holiday bonus in Christmas Vacation, chemo is the gift that keeps on giving the whole year through.  Psoriasis and joint pain are still an issue for Cathy.  Perhaps with a little more sun exposure and vitamin D absorption it will improve.  I think that I wrote about some blurriness in her right eye, as well.  Cathy went for an eye exam a few weeks ago.  The optometrist was amazed at how dry her eyes were - especially her right eye.  The optometrist described her right eye as "flaky".  Wow.  Apparently dry eye is another wonderful side effect of chemo that we probably read about, but didn't anticipate.  After a few weeks of eye drops, I'm happy to report that Cathy has returned to her regular eagle eyed self.  While we expect that many of the chemo side effects will subside after some time, we'll have to work to make those cognitive functions strong again.  Chemo has made Cathy's memory almost as bad as mine.  If hers gets worse we could be a dangerous combination of forgetfulness.

As much as I complain about the side effects of chemotherapy, I am grateful for the main effect - cancer is gone.