Good Doctors

Cathy's doctors have been a most excellent blessing.  Other than a little panic due to feeling the need to make quick decisions at the beginning of her ordeal, we have been able to find doctors who I believe to be the best available.  Even the first breast surgeon, who we chose to leave, was an excellent doctor - just not the right fit.

It's hard to find good doctors, though.  Harder than it should be.  When we realized that Cathy's breast surgeon wasn't the right fit I began spending hours researching.  I used doctors rating websites, doctors' own websites, the results of plain old google searches, and angie's list to learn about the doctors available to us.  It took a long time and was it was difficult to process all the information.  It was especially difficult to determine which sources and evaluations were credible.  I tend to believe that when it comes to ratings of things online it is usually the fanatics who leave ratings and comments.  It seems that people who take the time to make thoughtful comments are either extremely pleased or extremely upset about their experiences.  The average experience is often unrepresented.

Doctors with very full schedules or doctors who are nearing retirement present a vexing problem in this process.  We have experienced this in trying to find a dermatologist for Cathy.  With her psoriasis history, Cathy has needed to see a dermatologist.  We didn't like the doctor that we had seen years ago, so decided to find a new one.  We followed some friends' and other doctors' recommendations.  One dermatologist seemed to be somewhat incompetent and had a very socially awkward staff (there was a really strange social dynamic going on in that office).  Another dermatologist was highly qualified, extremely knowledgeable, and had some of the worst bedside manner imaginable.  Cathy tried to make an appointment with the dermatologist in our primary care group.  This dermatologist would be happy to see her...in March.  Through those and other appointments, Cathy had been unable to have her psoriasis addressed to her satisfaction.

This week she had follow ups with her outstanding oncologist and her bff breast surgeon. Both doctors, independently and unsolicited from one another asked her about her vitiligo.  Vitiligo?  Yes, that looks like vitiligo.  They could see how it would be mistaken for psoriasis because it is flaky, but clearly there is a loss of pigment.  How could two doctors who aren't dermatologists get this, but the dermatologists couldn't?  

Cathy had been resistant to calling my awesome dermatologist because, frankly, he's old.  He's the best in Cincinnati, but he's old.  She called.  "I'm sorry, he's not taking any more appointments.  He'll be retired as of January 1."  That was predictable.  All of Cathy's favorite stuff gets discontinued!

So the next day Cathy saw her excellent rheumatologist who also mentioned her vitiligo. The rheumatologist offered to get her an earlier appointment with the dermatologist in our primary care group...next week!  The rheumatologist predicted that Cathy will have to have a biopsy to confirm vitiligo, but that there could be some successful treatment options ahead for her.  

This has been a difficult process.  I'm thankful that all of this has been related to a relatively minor situation.  It would be much more distressing to be misdiagnosed and mistrusting of our doctors if this were a life altering health situation.  Yet, I know that is the case for many people.

It's difficult to find the right doctor.  Credible recommendations and references are hard to come by.  Sometimes you find a great doctor who just isn't right for you.  Many times you have to trust your gut.  Thankfully, Cathy is really good at reading people and can tell almost instantly if the situation is right.  I'm thankful for our doctors and I'm thankful for Cathy's perceptive people skills.

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.

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.  

Impatience

The report on Cathy is good, but we're all a little impatient.  This surgery has brought a higher degree of soreness and a greater feeling of being generally uncomfortable than the last surgery.  All of that means that Cathy is moving a little slower than she would like.  The blood and clots are still flowing in the drain.  Sometimes the clots clog the drain and the blood won't flow.  After Cathy or I strip the drain, the blood flows more freely, undoing the sense that quick healing is occurring.  Cathy and I find ourselves in a frustrating pattern that we are able to recognize and laugh about.  Cathy wants to be normal Cathy and do all of the things that she normally does.  I want Cathy to rest and heal while I do the things that she would normally do.  Neither of us are doing a very good job of either of those things!

So, we're both a little impatient with the situation.  We both had the realization that we're coming up on a year of dealing with cancer next month.  Spending an entire year or longer with this is a bit frustrating as well.  We will go as long as it takes, though!

There is good news.  So far, Cathy feels symmetrical - at least to an acceptable degree.  She did not feel symmetrical after the last surgery.  How many of us have symmetrical bodies anyway?  Her incisions seem smaller than the last surgery.  She is able to sleep and can stay on top of her pain and meds.  Tomorrow we will go to the one week follow up and see what that holds for Cathy.

Surgery Report

Cathy's surgery went as expected yesterday.  She was in the OR for two full hours and apparently had to have some pretty significant anesthesia administered to allow her muscles to relax for the best removal of the scar capsule.  She was really sleepy for about 3 hours after she was in recovery.  Today she is pretty sore, more so than her first implant exchange, but less than with her mastectomy.  Dr. Butterfield put a drain in the right side, the side with the hardest scar capsule.  She told me that removing the capsule caused more bleeding and that excess bleeding can increase the risk of future contracture.  Hopefully, the drain will be removed next week when Cathy has her follow up.  Cathy is doing well.  Her spirit is predictably good, but she would certainly prefer to not be dealing with this.

Surgery Tomorrow

Tomorrow Cathy will go under the knife again.  With Dr. Drosick's thoughts on her joint pain and psoriasis flareup, Cathy has gone with her gut feeling that another try with implants is the way to go.  Cathy will have a capsulectomy and explantation of her current silicone implants.  She will have them replaced with saline filled implants in hopes that the scar capsule won't contract this time.  Dr. Butterfield has been very straightforward in her (and the profession's) lack of understanding of what causes capsular contracture.  She has also put Cathy's odds of dealing with it again at 50/50.  We'll just hope and pray that she's on the good side of 50.  I will update her progress as the day goes on tomorrow and the next few days.  Thank you for your prayers and concerns.

A Little Clarity

Cathy had an appointment with Dr. Drosick on Tuesday.  We left the appointment feeling very good.  Cathy is thinking that giving saline implants a shot is the best move.  Neither of us is 100% sure of that, yet, but we think it is worth a try.  Here's why:

Cathy's bloodwork for autoimmune disease came back negative for everything.  No rheumatoid arthritis, no lupus, nothing of the sort.  She does have some rocking psoriasis, but Dr. Drosick feels very strongly that the psoriasis flareup and the arthritis are both the result of her body's reaction to chemotherapy.  He said that some morning about a year from now she will wake up and have no pain.  It will just vanish.  We don't completely understand because it's so complicated, but he said that the chemo suppresses the psoriasis, so when the chemo is gone the body attacks itself with an increased vigor because the immune system has been confused.  The immune system and autoimmune responses are such difficult things to understand, that I feel good taking his word for it with my limited comprehension of the information I've read.

Knowing that Cathy is negative for autoimmune disease (aside from psoriasis) and that the pain she's having is from chemo, we're thinking that her issues are not silicone related.  We still don't have an explanation for her poor vision in the right eye, but everything else is making sense.

With that in mind, saline sounds like a good solution - or at least worth a try.  We both think (and Dr. Drosick agrees [Dr. Butterfield, too]) that microvascular flap surgery is too traumatic of a surgery for Cathy to endure with too long of a recovery.  She doesn't have fat enough to consider adipose stem cell fat transfer, so it really comes down to saline or no reconstruction.  Cathy has a strong desire to give reconstruction another shot.  She's a beautiful and strong person.  She doesn't want reconstruction for any vain reason.  She just wants Clara to grow up familiar with her mom as a normally developed woman.  Cathy hopes for Clara to see herself as the same kind of person as her mom.  If that works out, Cathy will be very happy.  If it doesn't work out, Cathy will be disappointed, but I think that she is confident, strong, beautiful, and still the same person.  We both wish things could be the way they were before, at least physically, but Cathy knows that we will love her any way she is.  I'm so thankful that she's here and that she's going to continue to be here for a long time.  I praise God for healing her and I'll take her any way He'll let me have her.

More Challenges

Not too long after Cathy completed her chemotherapy treatment, her psoriasis returned just as strong as before cancer or perhaps a little stronger.  While chemo cleared up Cathy's psoriasis during treatment, Dr. Drosick told us that it is common for psoriatic chemo patients to have a flare-up of psoriasis that is pretty powerful after chemo is finished.  We had expected its return.  We also hoped that it would settle down over time.  As Cathy's psoriasis worsened, she began to develop some joint pain, as well.  Cathy's hands and elbows hurt, then her knees, hips, ankles, and shoulders.  The logical connection that I made (perhaps mistakenly) was psoriatic arthritis.  We thought that maybe this would settle down also.

Well, the joint pain is worsening and the vision in Cathy's right eye has begun to blur a little bit.  As the symptoms increased we felt the need for a little research and some doctors' appointments.  The doctors' appointments haven't happened, yet, but the research has yielded some interesting information.  We both encountered many stories written by women of silicone implants triggering autoimmune responses.  We read about blurry vision, joint pain, skin problems, and saw scary words like rheumatoid arthritis, fibromyalgia, and lupus.  Most of these stories indicated that within two years of the implants being removed the autoimmune disease vanished.

Further investigation led us to many research studies that have shown no connection between silicone implants and autoimmune disease.  Many of these studies included implants made of silicone gel, as well as saline implants encased in silicone.  While the research is pretty conclusive on this subject, the anecdotal tales of women with horrible autoimmune disease are pretty convincing.

We have a lot more research to do and a lot to learn before Cathy's surgery on April 23.  Any prayers for pain relief and improved vision would be appreciated.  Prayers for insight and guidance in decision making would also be appreciated.  Any readers in the medical field who could guide me toward respected and reliable medical journals that would help me gather information are welcome.  It's hard for someone outside the medical profession to know what research deserves merit.

The Daily Grind

It's been almost a month since my last post.  While it has been my intention to keep this focused mostly on Cathy, my own "stuff" has prevented me from writing.  The primary obstacle to regular posts is all the stuff we do every day.  Carving out regular time to write is very difficult!  The daily grind has become my regular excuse for not writing, or exercising as much as I'd like, or doing a whole host of other valuable things that don't fit into the category of primary immediacy.  I tell Cathy all the time, "When I have the energy I don't have the time and when I have the time I don't have the energy."  That statement applies to a dozen or more things.

My other main obstacle to blogging has been the same issue that's prevented me from journaling my whole life.  A lot of times I just don't have anything worth saying!  I subscribe to the philosophy that I should say what I mean and mean what I say.  Most times I only talk when I feel like I have something that is important for others to hear.  If it's not important, I usually just keep my mouth shut.  This approach to life generally serves me well, but sometimes it's a social handicap.

On to the purpose of the blog in the first place - Cathy.  Cathy is scheduled for surgery on April 23.  At that time she will have a capsulectomy and a replacement of the implants.  Her pain is stabilized or decreased slightly.  I think there are two factors at play there: (1) I don't think the capsule is hardening or contracting farther, and (2) Cathy has been stretching, doing yoga, and exercising pretty regularly.  Even though the capsule is pulling on the muscles, her muscles have much better strength and flexibility than they did a month or so ago.

Cathy seems less discouraged by having to go back in for more surgery.  She's more just ready to do it and move on, I think.  Her comfort has increased to a point that things seem to be more like normal.  Like normal is what has allowed the daily grind to take a stronger hold on both of us.  This next surgery will slow down the grind a bit and bring the new normal back to the forefront of our lives.  The new normal will be a topic of discussion for another day.

Peace to you all!

A Little Setback

We have to take the bad with the good, right?  Cathy had a little setback this week.  It's not a cancer related setback, but a reconstruction related setback.  As she has been healing from reconstruction she has been feeling a particularly powerful tightness on her right side.  The left side, which is ironically the side that was troublesome with the expanders, has felt pretty good.  After seeing Dr. Butterfield, we've learned that Cathy has developed capsular contracture.

Capsular contracture is a condition that deals with the scar tissue that the human body develops.  Because the implant is a foreign body, Cathy's body has developed a capsule of scar tissue that surrounds the implant to wall it off from the rest of her body.  This process is normal.  It's one of the body's defense mechanisms to fight off foreign invaders.  In her left breast, the capsule of scar tissue is thin, light, and supple, allowing for normal healing.  However, the capsule in her right breast is tightening and forcing the implant to shift in position.  The capsule of scar tissue is connected with other tissue, like skin and muscle, so as the capsule contracts it pulls on the tissue to which it is connected, causing some considerable discomfort.  

There is a grading system for degrees of capsular contracture.  It's called the Baker scale and it looks like this:

• Grade I — the breast is normally soft and appears natural in size and shape
• Grade II — the breast is a little firm, but appears normal
• Grade III — the breast is firm and appears abnormal
• Grade IV — the breast is hard, painful to the touch, and appears abnormal

In Cathy's instance, her contracture is a Grade IV.  So, all of this boils down to another surgery.  Sometime in April, Cathy will have to have a capsulectomy and then have her implants replaced.  The silicone implants will be replaced by textured saline implants that will reduce the likelihood of another capsular contracture.  The bad news is that once significant capsular contracture occurs the odds that it will recur are about 50/50.  We're praying that Cathy will be on the good side of that 50/50.  We're hoping things will turn out well, but if they don't the only further options are another surgery with no reconstruction or microvascular surgery using tissue from her buttocks.  Neither of those options is preferable.  

Lagging Behind

It's seems that it's been quite a while since my last post.  When I was a teenager and first learning to drive I would always, always forget to call home when I arrived at my destination to let my parents know I had arrived safely.  Each time I returned home after forgetting to call they would be upset with me, but then they would say that they supposed that no news was good news.  Not much has changed with me.  I still forget to check in.  I'm pretty surprised that I've made as many blog posts as I have.  At any rate, no news is good news, generally.  Cathy is still having a little bit of pain in her chest and some muscle tightness.  She is a little concerned about not healing in a symmetrical fashion.  She'll talk to Dr. Butterfield this week and see what she thinks.  Aside from that, I really just wanted to check in with all of you because I know that there are many regular readers.  I will continue to post even though I've lagged behind.  I sincerely appreciate your devotion to Cathy and your consistency in "checking the blog."  Please keep looking for more posts.  They will come!

Going Solo

Last week Cathy made it through her first week on her own with Clara.  Entering week four after surgery, Cathy is able to lift Clara to the high chair for meals and to the crib for nap time.  Although she shouldn't and it causes her pain, Cathy will carry Clara around from time to time.  Fear not, Cathy has been properly scolded by her overprotective husband.  Even though she knows I don't have any expectations for work to be done around the house, she likes to do it anyway and sometimes it's easier to do the work when she's carrying Clara.  Cathy, I know you're reading!  Nothing is so important that it can't wait until I get home to take care of Clara (danger situations notwithstanding).  I love you!

All kidding aside, it is wonderful to see Clara reach for Cathy and for Cathy to be able to pick her up.  It's a sweet reward after all the hardship hearkening back to the overnight weaning and Clara's cries for Cathy.  Trials and blessings.

LiveStrong

I'm not a Lance Armstrong apologist.  It seems that he has enough apologizing to do on his own and doesn't really need anybody's help.  However, I like to ride my bike. In fact, I've ridden a lot of miles.   I even ride a Trek bike, like the one Lance rode in his first Tour de France victory in 1999 (but I didn't buy it because of him - it was the cheapest carbon bike I could find).  I rode my bike in LiveStrong fundraising events in 2010 and 2011. I had cancer, my wife HAD cancer, my brother had cancer, my sister-in-law had cancer.   I've read a lot of books about Lance because he had cancer and he likes to ride bikes also.  For some reason that I can't quite explain I have an intricate and tangled psychological/emotional connection with Lance Armstrong.  Understanding that connection would probably take many hours and involve a leather couch and some people with PhD and/or MD after their names.  But I'm not a Lance Armstrong apologist.

There is an important distinction that needs to be made between Lance Armstrong's athletic activities, his self-acknowledged flaws, and the LiveStrong Foundation that he founded.  Perhaps because I've read quite a few books about Lance I wasn't surprised by anything he said in the infamous interview with Oprah.  For a number of years I've also been able to compartmentalize my feelings about Lance as a competitor, a human being, and a cancer fighter.  Oprah and Lance came to the conclusion that he is a bully - or maybe more appropriately - exhibits bullying behaviors.  There are very few times that bullying is an acceptable behavior.  Bike racers don't need to be bullied.  Reporters don't need to be bullied.  Friends don't need to be bullied.  But, cancer does need a bully and Lance is that bully.

The disease needs to be pushed around and shown who's boss.  Unfortunately, sometimes hospitals, doctors, and insurance companies need that, too.  We have been very fortunate that in Cathy's experience with cancer, as well my own, we have encountered excellent doctors, competent hospitals, and sufficient insurance.  Our experience is not always the norm.  That is where LiveStrong comes in.  

LiveStrong is not out to find a cure for cancer.  LiveStrong's aim is not to raise money to fund research.  LiveStrong works to support people who are struggling with the disease.  This includes those who are fighting cancer and the people who care for them.  LiveStrong's mission is to assist people in accessing the resources they need to win the fight.  Each cancer patient's journey is different and requires access to varying resources, which might include competent doctors, insurance claims, treatment plans, clinical trials, alternative therapies, financial assistance, understanding patients' rights, etc.

Cathy and I remarked to one another on numerous occasions that we could not imagine going through this disease without our network of insurance, doctors, family, neighbors, work flexibility, and above average intelligence.  The sheer amount of information that is necessary to digest is daunting.  The number of choices that need to be made, often on a short time schedule, can cause extreme stress and anxiety.  When you factor in the emotions that go along with a cancer diagnosis, it's easy to make life altering mistakes.  LiveStrong works to help make all of this more manageable.  

LiveStrong offers a number of free services, but the one that I find most universal is the Guidebook and Planner/Journal.  I say that it's universal because it works pretty well in helping someone with any type of cancer organize and process the mountains of information that are part of the fight.  LiveStrong will ship a free Guidebook and Planner/Journal to anyone who requests it.

The Guidebook provides all kinds of information that helps patients and caregivers plan the fight and make decisions necessary to win the fight.  The Guidebook contains a lot of "well, I never thought of that" information and scenarios, as well as some great starting points for deeper research into the billions of facets of dealing with the disease.

The Planner/Journal is organized in the same format as the Guidebook, but it provides questions to ask doctors, spaces to write answers, forms to track treatments, folders to place important information, and charts to note progress.  

These resources are indescribably helpful.  Every cancer patient needs these books to understand the decisions that lie ahead and organize the battle plan.  In addition to these books, LiveStrong provides face-to-face services to assist in the same manner.  It is my belief that when Lance had cancer he refused to be a victim of the disease.  He also refused to be a victim of the treatment.  Many cancer treatments are vicious and costly on many fronts.  An informed and organized battle plan can maximize the damage to cancer and minimize the damage to the patient.  In a nutshell, this has been Lance's mission with LiveStrong.

I hope that the people who have supported LiveStrong in the past will continue to support the organization.  I also hope that the businesses that have contributed to the mission will see that their money has provided more that the almighty "return on investment".  Personally, I have supported businesses that have supported LiveStrong because I know that the real ROI is lives lived.  Over the past 11 years I have been able to separate Lance Armstrong, the cyclist/doper/cheater/bully/liar from Lance Armstrong, the founder of an organization that has improved the lives of millions.  I hope others are able to do the same because LiveStrong is important regardless of the transgressions of its founder.

Good Things

Cathy's appointment with Dr. Drosick was a good one.  It was a 3 month (!) follow up from the end of chemo.  Dr. Drosick's optimism really bolstered us.  It's not that we were down, but it always feels good to have doctors tell you that the odds are in your favor.  He told us that, statistically speaking, it is highly unlikely for Cathy to have a recurrence based on her response to chemo.  Happy news!  We will still continue to be vigilant, especially with exercise and diet.  Cathy has already increased her walking and stretching, with an aim toward yoga and other cardio and muscular conditioning.  She's feeling well enough to walk 45 minutes at a time.  She still has some pain and discomfort in her chest, depending upon how she moves.  Cathy is only taking one Tylenol at night and nothing in the day, having finished her antibiotic course last week.  As far as eating goes, we are focusing on a regular healthy diet with emphasis on vegetables and fruits, lean meats and whole grains.  We still eat organic when possible, but we pretty much did that before cancer anyway.  Eating the right stuff is only really difficult when our schedules get crazy and we don't plan far enough ahead.  It's also tough when the sweet tooth strikes, Cathy and I both have a pretty powerful sweet tooth.  We're finding alternatives, though, like dark chocolate with high cocoa percentage, which is loaded with antioxidants.  One little square of dark chocolate with some almond or peanut butter goes a long way!

To the Legion of Angels

I believe in angels.  I believe in the classic vision of beautiful, winged cherubs.  I also believe in angels as frightening harbingers of wrath and destruction - and everything in between.  I don't know if I believe that God uses people as angels in literal terms, but I do believe that God uses people to do the work of angels on earth.

Since June, we have seen many examples of the closest approximation to real-life legion of angels that I can imagine.  Many of you have been part of this legion of angels.  And I want to thank you.  

There is no adequate way to say thank you to the enormous number of people who have helped us.  Cathy is much better at writing thank yous than I am.  I've written a lot, but just a small percentage of what she's written.  Although we remind and nudge each other when there are thank yous to write, I'm sure there have been a few we've missed here or there.  I don't know who we've missed, but we are so thankful for all the physical, spiritual, and emotional blessings we've received.

There have been a considerable number of anonymous blessings, as well.  We can never personalize a thank you for these blessings.  They include letters of encouragement, gift cards, services, and even a Christmas Jar full of money.  Identified or anonymous, we thank you.

Thank you, legion of angels, for blessing our lives with comfort during hardship.  Thank you, legion of angels, for easing our difficult path.  Thank you, legion of angels, for standing beside us.  You, legion of angels, are the embodiment of what is best in humanity.

Cathy Update

Cathy is remarkable.  As I am typing she is dancing through the kitchen from the microwave to the calendar.  She went to church this morning, had no naps, and is only taking Tylenol and her antibiotic.  Today, she fed Clara two meals and tucked the boys into bed.  I don't know what else to say!  She is feeling a little bit of pain, but I can't believe she had surgery two days ago!

...And she looks beautiful!

A Good Day

Cathy's surgery went well today.  They rolled her to the OR at about 9:15 and they called me to talk to Dr. Butterfield about an hour and a half later.  Dr. Butterfield told me that everything went as expected and that she replaced the expanders with permanent implants that were about the same size as the expanders.  Dr. Butterfield couldn't find a leak in Cathy's left expander, so its deflation will apparently remain a mystery.  We were home before 2:00 pm.

While Cathy is definitely sore, the permanent implants have already given her some relief from the discomfort of the expanders.  It hurts her to bend over, twist, reach, and other things that would logically cause pain to someone who just had chest surgery, but it seems that the pain is bearable and that she is feeling well.  As per usual, Cathy has already jettisoned the Percocet and gone just to Tylenol.  We'll see how that works through the night, but I have a feeling she'll gut it out with just the Tylenol.  

Other than a short rest this afternoon, Cathy has been awake, alert, and conversational.  She even helped clear the dinner plates and played with Clara a little (not lifting her, of course).  Cathy is a remarkable person and a really good patient.  She's so tough.

Enjoying It While She Can

Cathy is upstairs putting Clara to bed.  This is a good thing on many levels.  She wants to put Clara to bed and she is able to put Clara to bed.  This past week has been a blessing for Cathy.  Christmas Day marked six weeks since her mastectomy.  That six week time period was the minimum that the surgeon suggested for her to avoid picking up Clara.  On the day of our Savior's birth, Cathy happily lifted her own baby after six weeks of watching other people lift her.  Since Christmas, Cathy has been taking every opportunity possible to lift Clara.  Cathy has been soaking up Clara's love this week because after her surgery tomorrow it will be at least two more weeks before she can lift Clara again.

I can relate on some small level.  After avoiding illness for Cathy's the entire time of chemo and mastectomy recovery, I finally fell ill yesterday.  I haven't been holding Clara because I don't want her to get sick - and Cathy CAN hold Clara!  It hurts my heart when Clara runs over to me with her arms extended, begging to be picked up, only to be turned away and told, "No, I'm sorry, I can't hold you."  It's only been two days for me.  I can't imagine Cathy's longing after six weeks.

Tomorrow at around 9:00am Cathy will have her last major surgery.  Her temporary expanders will be removed and permanent implants will be placed in the pockets of muscle that the expanders have created.  She is looking forward to closing the last chapter of this book and opening the cover of a new book.  It is certainly not the end of the journey, but it is definitely a turning point.  

She's been so happy this last week and especially today.  She enjoys being a mom and being able to function fully in that role brings her great reward.  The next two weeks will be emotionally challenging, but will also bring hope for new health and a return to feeling like a whole human again.