Today I'm posting at chemo typing on the iPad. I'm prone to typos from time to time so I'll have to be extra vigilant today. It's never good to have autocorrect completely change the meaning of a sentence!


We just returned from family reunion at Pokagon state park in northern Indiana. I was again really attuned to what makes Cathy such a special person. She has an amazing ability to connect to people. Her focus and care in conversation shows people how important they are. I learn a lot about how to love by watching her speak with others. Doing what she does takes a particular discipline that comes naturally to her. It is something I want to be able to improve in my own interactions. For Cathy is easy and natural, making others feel at ease, natural, and comfortable. She is really gifted in this way. It is probably one of the things that so attracted me to her 20 years ago. She is the perfect person to help uncomfortable people feel comfortable. I'm so thankful she cut through my awkwardness with her loving words. 


While we were at Pokagon Cathy met another breast cancer patient. Cathy passed her in the hall at the lodge one afternoon and complimented her on her nice beanie. The other patient laughed it off and returned the greeting. The next morning at breakfast they got a chance to talk. This woman shared with Cathy that she cries every day and is constantly thinking that she's going to die. Like Cathy, she is a new mother, with a one year old baby. She noticed a lump while nursing and waited four months to go to the doctor thinking that it would go away when she stopped nursing. It didn't go away.  This 39 year old mother now has cancer spread to many lymph nodes. 


Since Cathy told me her story I've been haunted by how terrible that feeling must be. We don't know about lymph nodes or staging with Cathy so it's hard to know her prognosis at this point. We do take solace in knowing that we acted as quickly as possible. Cathy waited four days to go in - and that was only because it was over memorial day weekend. Those four days were agonizing for us.  I can't imagine this woman's emotions.  Cathy's new friend waited four months and now faces a dire prognosis with a very difficult road ahead. What would the prognosis have been if she went in when she first noticed the lump? What if more women, more men, had abnormalities investigated when first noticed? What makes people wait?  I know that for some it is the cost of healthcare. For others it is surely fear of doctors and procedures. But how much easier and less invasive would the procedures be if addressed earlier?


I wouldn't go as far as to overstate like a billboard we saw on the way to Pokagon.  "Prevent cancer, have a colonoscopy" it read.  Maybe instead it should have said "Detect cancer early with a colonoscopy" or "Prevent cancer with a coffee aenema - check your work with a colonoscopy".  I don't mean to make light of it, but we owe it to ourselves and to our loved ones to pursue and follow up on things that aren't right with our bodies. For those who wait because of the financial magnitude of healthcare that is another discussion that is political, one which I am ill equipped to enter. However, we could save ourselves and our loved ones some pain by visiting the doctor when we have issues that might require attention or by simply have regular check ups. If you haven't been to the doctor since last August, click out of your browser and make an appointment. If something hasn't been right about your body recently, pick up the phone and call. Take care of yourselves. You are loved and valued. 

I'll admit that I get a little aggravated and on edge from time to time.  The two things that bother me most, the things that I don't handle well, the things that I want to work on are (1) when we are trying to be on time for something and we can't get it together and (2) when the boys bicker.  I don't feel bad that these two conditions exist because they are part of every family.  Most siblings bicker.  I know that my brother and I bickered.  Jonah and Aaron bicker like regular brothers.  Thankfully, they don't beat on each other too much.  It's just a cycle of button pushing and yelling, usually.  Pretty tame in the big picture.  I'd like to think, too, that most families struggle from time to time coordinating all of the things that are necessary to get out the door, in the car, and on the way to events in a timely fashion.  I don't think that we are exceptional in this regard either.  But, I don't handle either situation very well.  Put both of them together and I lose my cool.

Cathy never loses her cool (except the day she married me ha-ha!).  When the boys are freaking out, when Clara is fussing, when I'm at my wit's end, she can bring calm to everyone.  She keeps her voice low, but everyone hears her.  She gives everyone what they need at the time.  She's magical.  Sometimes it really bothers me because I know I can't do that.  Her special presence is a gift that I don't have - that mystical, innate leadership ability that is given to only a select few people.

When I'm about to lose it, or I'm losing it, or I've lost it, I often ask myself what Cathy would do in the situation.  I can always come up with a good answer, but the implementation doesn't always work because I don't have Cathy's special way.  She's a great wife and a great mom.

To understand my ha-ha, Cathy's maiden name is Cool.  That is why the day she married me is the only day she lost her "cool".

It's a two-post day.  The previous post is for everybody, this one is mostly for band families.  This post is a little overdue also.  As many of you might have guessed I will be making a few professional changes.  Some are short term and some are long term.  Cathy will, of course need more of my care.  Additionally, our children will need more attention and care because they deserve more, Cathy won't be able to give it, and they will be under greater emotional stress.


In the short term, I will not be working with the 2012 Marching Band, at least on a regular basis.  I will still be at a rehearsals here or there and will see the band at performances.  I will not, however, be part of the regular staff.  As I did some quick math I learned that there are 168 hours in a week.  If I work 80-90 hours (which is normal) and sleep 60 hours, that leaves 18-28 hours in a week to take care of the home and spend time with my family.  Most of those hours I'm too tired be a real presence anyway.  So, the marching band decision becomes a no-brainer.  As Cathy heals and my own children make their way into high school (2 years away only!) the option to work with marching band begins to make more sense again for my life as a husband and father.


In the longer term, Avious Jackson and I will be swapping jobs.  This was a much more difficult decision to make.  I have truly loved my 10 years teaching the music students at Mason High School.  In that time I have been fortunate to build many great bonds and make greater art than I could have imagined.  Great art requires time and discipline, though.  In this year, and indeed for the foreseeable future, I will not be able to give what it requires.  Even when marching band is not in season, making great music and teaching well are incredible time consuming and emotionally demanding.  The students at Mason High School deserve to be able to make the best music they can and need fully committed instructors to do that.  At this time, Mr. Jackson is the talented artist and devoted teacher that these students need and deserve.  I am not that person.  Right now my family needs to be my work of art.


I will be working at Mason Intermediate School with an age group that I have experience teaching and with another teacher, Chad Fourman, who is a great friend and colleague.  I will appreciate the decreased time commitment and lowered performance stress as I focus on healing my family.  The students and administration at MIS also deserve the consistency of knowing that their personnel will not change year after year.  With that in mind, I plan on remaining at MIS until the needs of the district necessitate my presence elsewhere.


None of these decisions came easily, but the solutions were indeed obvious.  Even when logic is staring you straight in the face it isn't easy to make changes when you love the way things are.  Sometimes, oftentimes, doing what is right is the most difficult choice to make, even when it's easy to see.

Memories don't get corked.


Tonight we had our anniversary dinner.  Jonah, Aaron, and Clara were invited, too.  My plan was to cook some grass-fed fillet mignon from my hometown of Oldham County.  That all went well, including my first use of my dad's awesome cast iron skillet over the gas flame on the grill.  Yummy broccoli and couscous accompanied.  Everybody enjoyed everything, except the boys and broccoli don't enjoy one another.  I also had planned to open the bottle of 1992 Silver Oak Alexander Valley Cabernet Sauvignon that we brought back from our honeymoon.


When we were on our honeymoon we had an amazing day in Napa.  We visited Domain Chandon and learned the wonders of champagne and how it's made.  At Robert Mondavi I finally learned to like dessert wines with a Moscato d'Oro paired with divine shortbread cookies topped with a ripe raspberry.  The best tour was at Silver Oak, though.  Our admission price was the purchase of an etched Silver Oak Cabernet glass made by Riedel. During our tour they made sure that our glasses was never empty, filling it at every stop from the vineyard through the cellars.  They kept it filled with the 1992 AV Cab that they were about to release.  We were able to purchase three bottles before we left.  The first was opened early in our marriage on an occasion that I, regrettably, don't remember.  The second we opened with Tom to celebrate his passing of the bar.  There wasn't much wine involved in that celebration, though, because the bottle was corked.


Wine should be stored on its side.  This allows the wine in the bottle to keep the cork moist.  A moist cork is a healthy cork.  A healthy cork keeps the wine in and the air out.  When a cork dries out the wine may remain inside, but the cork also allows air to enter the bottle.  When air enters the bottle the wine is contaminated and develops a pretty nasty flavor, a putrid odor, and an ugly brown color.


Even though I had been really careful to properly store this wine that bottle had corked. Sometimes that happens.  I had held out hope that this last bottle would be good. If it was good, it would actually be spectacular - a 92 point wine in 1997, aged 15 more years.  I removed the foiled and lowered the cork screw.  As the corkscrew spiraled down little bits of cork climbed up the incline.  At that point I knew my hope was lost.  I carefully maneuvered the rest of the cork out, still losing a few bits down into the bottle.  I smelled.  Corked for sure.  I tasted anyway.  It was brown and it tasted brown.  I was pretty sad and told Cathy that I had hoped this one wouldn't' be corked.  Alas, it was.


Cathy said, "That's ok.  I still remember the day."  Even though we didn't get to taste our memories of that day, we still can remember being together.  We can remember the warmth of the sun and holding hands as we walked through the rows of vines.  We can remember the taste of those grapes that we took off the vines, spitting out the giant pits.  We remember starting off our marriage carefree, exploring a land that was completely new to us, experiencing all of the newness together.  We still strive to experience the newness of everything together.  We love having adventures, embracing new things simultaneously.  


The night we got the diagnosis we decided that it would be another adventure.  It might not be as fun as our other adventures, but we would do it together.  This adventure would be all new and even though we would take away our own individual memories of it, we would experience it together, side by side the whole way.


Along the same lines, but on a completely different plane, we had another adventure today.  Since this is kind of my journal in addition to a blog about Cathy, I have to write about today's adventure.  This afternoon I spilled a full bottle of loctite on my bare foot. For those of you are unfortunate enough to have an adventure like this in the future, let me tell you how Cathy helped me.  She got me a bottle of nail polish remover and a salt shaker and I sat in the bath tub for an hour making an neat purple salt paste and rubbing it all over my foot.  Most of it is off and my foot skin is really soft.  I also don't have any hair on my big toe.

In sickness and in health...


Fifteen years ago today Cathy and I included this phrase in our wedding vows.  Like any newlywed couple we had no idea what life had in store for us.  We knew that whatever life brought, we wanted it together.  We've had plenty of good health and plenty of sickness.  All of it has been made better by Cathy's presence.  With Cathy, the good times are more enjoyable and the hard times are more tolerable.  We have plenty of practice in caring for each other.  When I began thinking of the list of times we've cared for each other in times of need it made me think, "Are we the calamity couple?"  Together we've made it through thyroid cancer, three childbirths, two knee surgeries (three if you count Jonah), two miscarriages, and appendicitis.  It would be easy to think that we've never enjoyed the "in health" part, but we've had many more healthy times that sick times.  It's been a blessing to have Cathy care for me during the last fifteen years and it's been an honor to care for her.  The present time is certainly the most concerning of our times of sickness, also the longest time of sickness with many more months of treatment and recovery to come.  I'm thankful that I can be part of her healing process, though.  


I've read lots of books about cancer by doctors, patients, survivors, and caregivers.  One phrase that I read from time to time is, "Cancer is the best thing that ever happened to me."  While I don't think that cancer is a good thing, it often brings a different perspective on people's lives than they had before their cancer experience.  I wouldn't say that I'm thankful for any of our hospital visits (except the visits that yielded children), but they have been an important part of who we have become as a couple.  Our experiences have built a stronger bond between us, a greater faith in one another, and a greater faith in God together.  I think that's what those vows are about.  


Happy anniversary to my bald and beautiful wife, Cathy!  I'm looking forward to all that the the next fifteen years bring, as well as the fifteen after that and the fifteen after that and the fifteen after that.  I love you!

As she entered the kitchen this morning Cathy said, "Ah, Tuesday."  Energy-wise and personality-wise Cathy was about normal today.  Her digestion is still a little bit off, but all else was pretty good.  A new thing this time around is mouth sores.  They seem to come and go pretty quickly, like one that was on her lip this morning and gone by evening.  We expected those last time, but they didn't really materialize.  Cathy has been able to give a little more of herself to Clara the last couple of days, also.  It has been beautiful to bring Clara to Cathy in the morning or after a nap and watch Clara's smile grow as she gets closer.  No one can get Clara lit up like Cathy can.


God is certainly at work with all of us here.  It's not always what we want but it's always what we need.  Today, especially, has reminded me of the scene in the movie, Evan Almighty, when Morgan Freeman (who seems to always get the role of God when there is one to be played) is a waiter in a restaurant.  He tells the mom that if she prays for patience God won't give her patience, but instead He'll give her opportunities to be patient.  Many opportunities...


There was a post I did over the weekend that seems to have been lost somewhere in cyberspace.  I wonder what happened to it.  I don't even remember what I wrote, but I remember writing.  Hmm.

Since it's the Thursday after chemo it's easy to guess Cathy is feeling pretty rotten.  The good news is that she feels a little less rotten than last time.  She has a few less things to deal with this time around.  Last time she had port placement surgery on Friday before chemo started on Monday.  Last time she had just finished a course of heavy duty antibiotics because of a breast infection.  Last time that breast infection, due to milk production and no nursing, was still quite painful.  With biota depleted in her gut from the antibiotics and all kinds of pain in the chest area, she started chemo in round 1 with two strikes against her.

This time she is still REALLY tired and kind of nauseous, she doesn't have endless diarrhea and chest pain.  The nausea is predictably worse when she moves around, but like last round and like during pregnancy, Cathy will fight like mad to avoid throwing up.  She is eating more (broth, eggs, toast, oatmeal) than this time last round and is smiling and laughing as much as she can.

Last round she had lots of bone and joint pain that she thought was from the infection because she had a fever.  We now think that it is the side effect of the Neulasta shot.  The doctor told her to take Tylenol morning and evening for a few days whether she thought she needed it or not to avoid this pain.  So far, so good on that one.


In the second week of the last round Cathy told me to say, "Remember Tuesday."  This time she told me to say, "Tylenol works."

At 3:07 am a cry pierced the night silence.  Clara's hunger pangs rang clear through the monitor and in a more muted manner from the door down the hall.  I waited a few seconds to determine if her cry was a one time affair when she rolled over or if she needed my attention.  The fuss continued and I swung my legs over the edge of the bed and pushed myself up.  I paused, seated on the edge of the bed, while my heart gave a few heavy thumps from being jolted away.  Lumbering to the bathroom to turn on the hot water, I steadied myself in the door frame.  After warming the water I made my way down the hall to Clara's room.  I found her perched on hands and knees, head down and eyes closed, crying quietly as she searched for the strength to keep herself lifted.

I picked her up and laid her head on my shoulder.  My hand patted around the bed feeling for the pacifier.  Clara sensed that I had found it and turned toward my hand with her mouth open and eyes closed.  Returning to the bathroom, the water had warmed and was ready for filling the bottle.  With Clara cradled in my left arm, nearly too long to fit there, I filled her bottle and screwed the cap on.  I covered the end of the nipple with my index finger and shook the bottle to mix the powder.  When I removed my finger the bottle emitted a quick spray on the bathroom mirror.

Clara and I made our way to the glider chair next to Cathy, the same chair where Cathy would nurse Clara if she needed a nighttime feeding.  I sat in the chair with Clara's head resting in the crook of my left arm and her feet touching the arm on the right side.  I hooked the pacifier on my left index finger and replaced it with the bottle in her open and waiting mouth.  Her eyes still closed, Clara drank deeply.  Clara extended her arms and spread her fingers probing for something to feel.  She found her hair and began gently pulling on a few strands.  Her left hand released its grip on her hair and moved toward the bottle.  


Clara's left hand, with it's impossibly soft skin stroked my right pinky.  The soft pad of her thumb explored the sharp edge of my nail.  She curled her tiny fingers around my pinky and gently pressed against the pad of my pinky with the edge of her thumbnail.  Her right hand wriggled through the opening in the crook of my arm and reach behind me.  She patted my back as she continued to drink.


The bottle emptied and Clara ejected the nipple with a light kiss.  The thin line of white formula between her pursed lips reflected the light from the window next to us.  I put the pacifier back in her mouth and lifted her to my shoulder.  I patted her back waiting for the burp that rarely comes.  Instead, always to Cathy's delight, my efforts to burp Clara resulted in my own little burp.  I returned Clara to her bed and laid her on her back.  She instantly rolled on her left side, bringing her knees and elbows together.  Clara was ready for a few more hours of peaceful sleep.


Every night as I sit in the glider, feeding Clara, I'm thankful for opportunity to care for her and love her.  I pray that this time that we have together when she in an infant will provide a strong foundation for our relationship as she grows older.  With mixed emotions I realize that were it not for Cathy's cancer I would never have had this opportunity to bond like this with my only daughter.


For the last ten years I've thought of cancer every day.  It was about this time in 2002 that Cathy noticed a lump in my neck.  At that time I knew that it was possible that it could be cancer, but I waited four long months for a diagnosis to be confirmed.  


In those days and in the days since I have asked myself and asked God, "Why?"  I ask why not from a sense of self-pity, but in a search for purpose.  What is the greater purpose for my cancer?  What is the greater purpose for Cathy's cancer?  In ten years of searching for those answers I have come to no definitive conclusions.  

I have learned that the answers are different for every individual involved.  Anyone who has had cancer knows that it doesn't just effect the victim, it effects that family and friends, as well.  In the case of my cancer, its purpose in my life and the purpose in Cathy's life may well be very different.  The same is true in the case of Cathy's cancer.


I have also learned that there may not be one big purpose that is gift wrapped for easy discovery and life revelation.  The purpose may be a long chain of tiny events that lead to the exposition of God's will in our lives.  While I hate that Cathy has this disease and must suffer the pain of its eradication, I am grateful for the bond that I now have with Clara, the bond that would not have been if Cathy continued to nurse her.  Would I trade this time with Clara in exchange for breast cancer to never have existed in Cathy's body?  Absolutely.  I know that for me, my bond with Clara is one positive part of the chain of tiny purposes during this awful time.  I pray that my eyes are open, as well as Cathy's, Jonah's, and Aaron's, to see the possibilities and opportunities that exist in the times of difficulty and crisis.  I pray also that God's will would be constantly woven through these chains.

Today we have a live blog of sorts.  The oncologist's office has wifi, so I brought my computer.  I can blog and watch the Tour de France while Cathy sleeps through the Zofran and Benedryl.  We arrived at the oncologist's office at 8:45, Cathy got her finger pricked for blood counts and we went into the exam room.  Her blood counts were all good, although white blood cells just a little low.  In the last few days Cathy had noticed that it was difficult to find the tumor as compared to a few weeks ago.  Before treatment the tumor was about 3cm and felt like a clearly defined oblong ball.  Now it is difficult to feel at all.  Dr. Drosick felt it and his response was, "Whoa, that's crazy.  This is really good.  You're responding well to the chemo.  It's kind of insane.  You'll have a good prognosis.  A lot of times we do surgery before chemo.  Then we don't know how the cancer responds to treatment and the prognosis is a little bit of guesswork.  When we do chemo first we know how it responds and we can get a more accurate estimate of prognosis."  That was a paraphrase, by the way.  His words reinforced the decision to do chemo first, especially for someone with a high risk of recurrence, like Cathy, with the BRCA1 gene.

At the present moment Cathy has her lead into the port, the nurse asked the doctor to call in the order, and we're waiting for the drugs to come back.  Cathy has such a great attitude about all of this.  She knows her hair will come back.  She says, though, that it's a good thing that we don't know when we're about to get sick because knowing it's coming is not fun.  As her eyebrows are beginning to thin out she joked with me, and then the nurses about the Seinfeld episode when Uncle Leo's eyebrows got burned off and Elaine drew them back on.  She is so silly and I'm so thankful that she has taught my children to be silly and appreciate silliness, as well.

 

Last night Cathy started pulling her hair out in clumps.  I guess we had both thought that it would be more gradual, like the last few days.  Maybe we'd both secretly harbored hopes that it wouldn't really happen - just a little thinning maybe.

It's hard to know what to say as a husband.  I've told her that I love her without hair and I still think she's beautiful.  That doesn't take away the pain of losing it, though.  The kidding about it being like the times that Mo is shedding and you can pull out giant clumps of his fur with a gentle pinch were good for a few giggles, but it doesn't make it come back sooner.  She's predictably tough about it, but it has to be hard when your hair is the shortest it's been in 37 years.

On the bright side - remember, ups and downs - Cathy said that if she didn't have short hair and a port it would be hard for her to remember she's sick.  That's a good sign.  She sings and laughs and does silly things for the kids, like normal.  A few more good days before chemo again on the 9th.  Between now and then she'll have her first hairless swim on the 4th with lots of sunscreen.  I told her she should be really fast in the pool - no need for a swim cap.