I was never fortunate enough to know Ryan as his family lived in North Caroline when he was younger and he was out living and loving his life when I was around.  I believe I have met him once at a family gathering, although I have spent more time with his parents and siblings.  Despite not knowing him personally, I was always aware of his many experiences and loved receiving updates on what this giving and talented young man was doing now.

Matt said it best when he said Ryan was a naturalist.  He loved nature and the outdoors and believed in living off of the land, taking only what you needed from it and protecting our country’s natural beauty.  In college we were amused to hear that Ryan chose to live in a self-made teepee near his college campus of Appalachian State University.  Now technically, it may have been considered “squatting” but those that knew didn’t seem to mind and Ryan was testing himself while finding himself in those woods.  I heard about the beautiful woodwork that he taught himself to make from his mother.  Such skill was unusual in such a young person.  Ryan may have chosen a different lifestyle than the average college student, but his actions spoke to the depths of his beliefs and it is rare to see someone so young so confident in who they are and how they want to live.  He had a passion and he lived each day dedicated to that passion.

He spent summers in college at an outdoor camp and his choice in major confirmed his desire to spend a life dedicated to the outdoors.  His career exploits led to a move to the west coast with some time spent on a fishing boat in Seattle and finally a job as a park ranger at Yosemite National Park.  His mother sent frequent email updates about his fulfilling work there. He educated many visitors, saw to their safety and worked with many teams on search and rescues at Yosemite National Park. I am sure that many of those who he helped and rescued saw him as a hero, just as I am sure that he was a hero to our natural environment and that this country has lost a heartfelt representative to the beauty and value of the lands around us.

Much of what I know of Ryan has come from his family.  It is my husband who has the real memories of time spent with Ryan.  While my husband and Ryan had not spent much time together as adults (time and distance seem to separate all of us from childhood friends and memories as we age), Matt has many fond memories of childhood times with his cousin.  They played together at family gatherings and when asked Matt just sighs and reminisces that he was a “very, very sweet kid.” Some of his fondest memories are of summertime family gatherings at his gramma’s house on a lake in Maine.  Matt recalled fishing with Ryan and perhaps his love of nature was developed there.

I can’t begin to imagine the pain that someone even closer to Ryan is feeling right now.  No matter the age, cause or closeness of an individual death is always a shock; but to lose someone so young and so unexpectedly is even more so.  This truly is a reminder that loss can come at any time.

In my journey over the last several years I know that my loved ones have frequently considered what my death will mean to them.  I know that this haunts them and that they take more time to see me, make more of an effort to show me their love and support, consider their words when speaking with me, give me forgiveness more readily, tell me they love me more often, choose not to argue over small and large things and love me every day as if I might not have a tomorrow.  I now look at Ryan’s death and pray that what we all take from this is that death is almost always not planned, not considered and not expected.   I hope that we can all look at the way I am treated and extend that to include our spouses, all of our children, our friends, our extended family, our neighbors and all those we care about.  Let’s please try to love everyone we love as if there is no tomorrow.

The last several years have certainly been very poignant Christmases.  The holiday season always brings you closer to family and it also always marks a step in my cancer journey.  I get particularly emotional at this time because I can’t help but thinking each year that this major family holiday may be my last. I tend to justify my crazy present spending sprees by using the “this could be my last Christmas” logic.  It has worked for the last four Christmases and I’m hoping it will work for many more!  (Of course, I would prefer that I not have that thought pop in to my head every year, but I can work with it as long as I’m here to think it!)

The holidays are usually set around a very tight schedule.  This schedule was set when we moved back to PA three and half years ago and I was finally in my dream home with my dream plans for Christmas.  I have always wanted a large foyer in which to set a beautifully displayed real Christmas tree.  I knew this tree would be done in red and gold and I knew it would be my tree only (no kids interference – this one was for momma!).  My first Christmas in our new house realized that dream.  My kids and I went to a Christmas tree farm and picked out our 12-15 foot Christmas tree the week after Thanksgiving.  We always had help getting the tree home and it is quite a fiasco setting that thing up.  This year Matt and I did it ourselves (in previous years we had at least two other people here when we tried to set it up) and we worked hard.  Matt was virtually in the tree while I was on the stair steps frantically trying to tie the security lines before it fell on Matt.  There was a slight tilt to the tree this year, but we decided that it was fine because we were not trying to fix it by untying the lines!  Our tree this year was slightly shorter than usually (about 12 feet) and definitely wider.  My sister Holly loves the fat trees and since she, my dad, my kids and I were the ones traipsing through the tree farm I let her have her way.  The tree was situated in a clearing amongst all these other closely knit trees and it truly was a light shining down on this glorious tree moment when it was spotted.  It barely fits and your can only safely carry large objects the long way around our foyer because the tree is a bit too wide.  We all suck it up and go the long route because this tree was worth it! 

Now before you think I’m a mean mom, you should know that we set up a second fake Christmas tree in the playroom that my kids get to decorate.  That is their tree.  Ornaments collected and made over all our years are hung on the kid’s hodgepodge tree.  We even have ornaments from when my husband and I were babies.  The rest of my house is also decorated to the hilt with Christmas décor.  I rarely do anything outside, but the inside is a Christmas miracle!  Last Christmas I was facing another surgery right before the holidays.  I was weak and overwhelmed by the idea of decorating the entire house.  I had friends offer help, but when it was time to do it things didn’t work out and I was looking at the prospect of decorating by myself.  My mother said to not worry about it, everyone knows your sick and it doesn’t have to be done.  I called my sister Brandi, crying and exhausted from trying to hang the lights on the big Christmas tree (my most hated part of Christmas).  I said people didn’t get it.  This was important to me, I HAD to get it done and done right.  Brandi, the therapist, understood right away.  Decorating my house to the hilt was my tradition.  It was my normal.  It was my children’s normal.  I was refusing to let cancer change our normal, even if the doing was killing me.  Brandi promised we would get it done and then she set to work.  She called my siblings who lived in my vicinity and impressed upon them the importance of this for me.  My husband and family pulled together and helped me get it done.  My house, my heart, my kids and my soul were now ready for Christmas.

On Christmas Eve my family all meet at my parents house and fulfill another family tradition that my father started 13 years ago.  We all go Christmas caroling to elderly friends and family that live close to my parents.  Dad started this when I was in high school and at first my siblings and I were all very reluctant.  Based on our level of embarrassment (at the time) and reluctance we negotiated for some ground rules.  We could only carol at houses where folks older than our parents lived and we would only carol to these people if they didn’t have any younger family there.  Our goal was a selfish one, we didn’t want to run into people we knew, but the end result was a magical one, we caroled at houses were older neighbors were spending Christmas Eve alone.  Or I should say, alone until we showed up.

Christmas caroling has become a much anticipated event.  We bring cookies and sing two or three songs. Now, none of us are musically inclined so Jingle Bells, Rudolph the Red-Nosed Reindeer and We Wish You A Merry Christmas are our staples.  Mom would love it if we threw in a Silent Night but we just don’t have the pipes.  Loud, rambunctious, out-of-tune singing is our specialty.  My kids carry the jingle bells, we all wear Santa hats and we use the opportunity to introduce the new members of our family.  This year we had a new baby, Olivia; Brandi’s boyfriend is now her husband Jake; Adam’s girlfriend Danielle is now his fiancée; and Holly’s boyfriend Ryan joined us for the first time. 

Over the years, the number of houses we carol at has unfortunately dwindled.  Many of our elderly neighbors and family have passed on.  We decided this year that we need to pick up a few more people to sing too!  Also over the years these neighbors have come to anticipate this event.  Most homes have cookies and fudge ready for us (my daughter had a stomachache on Christmas night because of how much she ate!).  Jane B. made potato candy because she knows it’s my dad’s favorite.  We learned from my dad’s uncle that she had called them three times the week before Christmas Eve asking if we were coming.  We haven’t missed her in thirteen years and we’re not sure why she was so concerned this year.  Maybe she makes those phone calls every year and this is just the first we have heard of it.  We told dad that he would have to call her next year so she didn’t stress about it the week before.  Uncle Pud has learned to leave the light on for us to just come in.  He always wears clothes now on Christmas Eve.  Those first few years of caroling were interesting with dad going in first and making sure Pud was decent! Ruth had fudge for us and shared her concern about a daughter who had just been diagnosed with cancer.  Sam, Glenna and Gail also had fudge, as well as a handmade wooden puzzle for me from Sam.  He heard that I liked to do puzzles in all my downtime with treatment and made this special for me.  We ended with my dad’s aunt Martha Jean.  Three Christmas’s ago we sang to her in a the hospital, last year we  sang in her retirement home, this Christmas we found her recovering in a nursing home from a bad injury in Williamsport.  She said she didn’t think we would come out there to see her.  We assured her that she ought to know by now that we would find her on Christmas Eve.  She then said she wasn’t sure where she would be next Christmas (given her poor health), she might not be findable.    We all said if we can get to her, we will.  We ended the night with hugs, smiles and a few tears.  There is no better feeling than the realization that you are bringing joy to these sweet and caring people.

Christmas morning was spent at my house with my husband and children.  They loved all of their presents and were happy as can be.  Without cleaning up we traveled that night to my parents for two family get-togethers.  Typically Christmas Day night we have a huge extended family get together and name exchange at my Nam’s farm.  This year we did it on Friday and it was wonderful to see so many aunts, uncles, cousins and babies!  Then on Monday morning my siblings and significant others have our family name exchange.   We buy for one person instead of the multitude of us, although I have broken the rules for several years now.  I buy for everyone!  Although, to be fair, I spend more on my name exchange so they are not shorted! 

Gift giving is such a big part of this holiday and I know that that can get overwhelming for some people. I love making my list and checking it twice.  I love the smile on people’s faces when they are given a nice gift. I know that cancer has influenced some of our choices made over the last several years and tears are generally brought to my eyes at least once during the season.  Our first Christmas after my reoccurrence was by far the hardest and most emotional for everyone.  My husband made me smile by giving beautiful silver platters to my mom and sisters for helping us out for the two weeks I was in the hospital.  My brother Adam has the gentlest soul and his gifts were what released the waterfall that year.  Adam is an artist and was taking pottery for the first time during the time of my diagnosis, surgery and start of chemo.  He made pieces of pottery for everyone that year.  He also included notes about what he was thinking/feeling while making each piece.  Adam used his pottery as a release for all his feelings of anger, fear, sadness and love during this extremely difficult time.  He had professors compliment his work and say they had never seen someone work with clay that way that Adam would.  I have a beautiful black glazed vase that is lovingly smoothed in rings on the top and marked with chunks of jagged clay and deep groves on the base that was created by the end of a hammer that Adam used to scrap out his anger and fear.  I can see the emotions and love used to craft every piece. 

Last Christmas my Uncle Chris had my name for name exchange.  He gave me a lovely necklace that had a family tree on it.  Simple, sweet and tear-jerking.  I loved it.  This Christmas was passing without too much emotion.  We gave presents and I loved them all but there weren’t any that brought on the tears (except the handmade puzzle from Sam – how can you not get emotional when you are made to realize how many people care about you).  I should have known better.  After all the present unwrapping was done, I was sitting on the couch when everyone came in to the living room and my sister Brandi said, we have one last present.  I knew it was going to be difficult when her eyes glazed over and she pulled out a piece of paper to read from.  Here the words that she read:

“First, here is the back-story, Twenty years ago a fiber artist friend named Louise Todd Cope, told me about the process of her Father’s illness and how she had made a “cloak of protection” for him to lay over the end of his bed.  Included in the cloak that she made were pieces of cloth from her past, and threads woven in that reflected moments and memories of the time they had together as a family.  The story continues which you (meaning me!) can read later.”   Brandi drew a deep breath and continued, “Dear Rachel, The above story was sent to us from cousin Jackie who gave us the idea of making you your very own Cloak of Protection.  Jackie had told us the story of the quilt that was made for E from Jim’s mother’s shirts and we thought that this was something special we could do as well.”

“So, your Cloak of Protection includes a labor of love from Mom in which she creatively and painstakingly combined clothes from your loved ones.  There are shirts from your husband, your children, your mom and dad, your brothers (or rather a pair of boxers from one brother), your sisters, and your nieces and nephew.  There are clothes that were passed down from one child to another, there are pieces from favorite shirts and even a piece from the bridesmaid dresses from your wedding.”

“Use this Cloak of Protection to surround yourself with warmth and love as you battle through anything and everything that comes your way.  Each piece of cloth is but a small reminder of the power of family and support.  Draw strength and energy from this blanket and remember that no matter what you are not alone EVER!”

Love, Your Family

I wore my Cloak of Protection the next day when I began my next round of chemotherapy.  Merry Christmas and Happy New Year everyone!

I had my six-month dental cleaning last week and, as I knew, I have a cavity or two that need taken care of.  I knew they were present because they were present at my last two cleanings.  Unfortunately I am unable to have more than a dental cleaning due to the chemotherapy I am on.  I have not been off of chemo long enough to have these cavities filled in the last year.  The chemo leads to increased bleeding that makes dental work impossible. I have always had cavity prone teeth (to my husband’s irritation – although I do like to remind him that I have NEVER had a root canal, unlike somebody in our household) and frequently need fillings.  Unfortunately, while I do not have any discomfort from this cavity, it has gotten a bit larger and will now need to be fixed with a crown (Sorry, Matt, I know I hadn’t told you that yet!).  The dentist plans to contact my insurance about coverage and will hold on to the information until I am able to go forward with dental work.  This new information has led me to my latest brain meanderings.  How much I am willing to spend on something that only benefits me in the future?  How much hope do I have for my future?   

If it cost $50, I know I have at least fifty dollars worth of hope.  But what about $400.00?  Eke, that gets a little dicey!  Do I have four hundred dollars worth of hope inside of me?  I guess I need a little more information to make this decision.  At what point does the cavity start to really affect me?  One year from now?  Six months?  Two years?  How comfortable am I with the idea of having it pulled if I live long enough that it causes problems, but I’m too sick or still not inclined to have it fixed?  How long do I think I have left?  One year? Six months? Two years? More?  Do I think I can outlast this cavity?  By outlast I mean will my body quit first or my tooth?  How much hope do I have that it will be my tooth that quits before my body?  Is this hope strong enough to spend $50?  How about $400?  Sigh.  My head is getting tired.

I know these seem like silly ponderings, but they are jumping around in my head nonetheless.  As they are jumping around I come to a final realization, if I decide that I am absolutely not going to get the crown, I am admitting that there is no hope.  My analytical, rational mind says that it is likely not worth spending that money on something that is only going to benefit me a long time down the road.  But there is something inside of me that refuses to accept that final thought.  Let’s just call it a spark.  Whenever I get sad or depressed or start to feel like maybe this is hopeless that spark kicks in to gear and reenergizes me.  I never stay in those sad states for very long (usually less than 15 minutes or so – the time I find myself in true depression actually has lessened as the length of this process has gone on).

Now I’m not sure what gives me this spark; a strong determination, a swift kick in the ass from God, or just sheer stubbornness.  Whatever it is, it has never gone out.  Sometimes I need a few minutes for the spark to kick in. Sometimes I need a small pep talk from my husband or one of my sisters or my friend Susan.  Sometimes I need a hug from my kids.  Sometimes I just need to write my thoughts down on to an ever therapeutic blog.  But most of the time I just need a minute to wallow in the hopeless future and then the spark jumps inside my chest and that future is no more.  I am so blessed that this magical spark resides inside of me. 

I recently read an article that my friend Kendra’s husband, Mike, posted on facebook.  The article really has me worried about how our children are going to find that spark inside themselves.  An elite middle-school basketball team in Kentucky was inappropriately scheduled to play a very small rural Kentucky basketball team. All involved parties knew that the game would be a blowout and all involved parties agreed to the game.  Well, of course, it was the expected blowout and the team won 100-2.  Now, before you start screaming foul against the winning coach you should know that he pulled his starters after one minute, stopped the full court press (whatever that means – I don’t play basketball) and had his team effectively stop playing defense.  Yet, despite his, what I consider, sportsmanlike attempt to keep the score down, his school board is considering suspending the winning team for the season for what they are calling an unsportsmanlike game.  I have just one question, what did they want the coach and team to do?  Stop playing?  Declare pity on the losing team and walk off the court? The inevitable win was known from the beginning and attempts were made by the coach to play as fair as possible.

What lessons do we send to our children when we attempt to punish winners for winning or losers for losing?  Whatever happened to “it doesn’t matter if you win or lose, it’s how you play the game that counts”?  I think it is not just okay, but essential, that we teach our children that sometimes you lose and sometimes you win.  It is a fact of life that this happens.  The next step in that statement is emphasizing that the true worth of a person is in how they play the game (i.e. the sportsmanship that they show – win or lose) and that they KEEP playing the game (win or lose).  Play your hardest and when you get knocked down, get back up and do it again.  Even when you are losing, you are a winner if you keep trying hard. Childhood is the time to learn these lessons so that our children are prepared to be adults. 

How can we expect kids to develop their own sense of dignity and strength when we don’t see any value in teaching them how to lose?  In order to teach grit, determination and success we have to allow them to fail first.  When my daughter loses or wins a soccer game we like to tell her: It doesn’t matter if you win or lose, what matters is how you played the game and that you tried your best.  Don’t gloat if you win and don’t cry if you lose.  If you fall, get back up and try it again and then again and then again.  The value is in the will to continue to try and try harder, not just in the thrill of the win.  If we try to completely cushion the idea of loss and failure are we creating a society of whiners taught to just give up or blame someone for their loss instead of letting the lose go and continuing forward?

Because the reality of the real world is that we will all fail at something.  We won’t get in to the college of our choosing.  We won’t pass every test we take.  We will get our heart broken by a boyfriend or girlfriend. A loved one will die and we will hurt.  We will face a real health crisis, like cancer.  As we get older the obstacles become more significant and the hurt more poignant.  Why not start trying to teach our children how to overcome these hardships when it is just something as minor as a sports game?  Eventually, we will all face very tough hardships that WILL knock us down.  I want my kids to get back up when that happens.  I want my kids to find their spark.  We all should want this for our youth.  Parenting is tough; sometimes we have to allow the hurt to happen in order to teach the bigger lesson.

As for me, I have my spark.  I don’t know exactly how I got it, but it might have had something to do with my parents coaching me through my many wins and losses in sports.  I don’t know what makes it work.  I don’t know why it never goes away.  I just know that when it comes time to make that final decision, no matter what the cost, I will probably get that crown.

I am finding that taking treatment this time is much harder emotionally.  I am sure that there are several reasons for this.  First off, the side effects are less than what my most recent treatments have caused.  I knew I would have some, but I think I had convinced myself that I could muscle my way through this round without any problems physically.  Wrong.  About a week in to the treatment I started feeling nausea with each dose.  Finally, my stomach caved and I threw up one evening after taking the pills.  I wanted to cry, because, shit, I was feeling bad again.  I’m more tired and I did develop hand/foot syndrome (which I expected).

The biggest problem is that until I started taking the chemo I was feeling wonderful!  If you’ve read my other blogs you know that I stopped treatment for about two months to prepare for a surgery that didn’t happen.  In that time my energy returned, my appetite was great and I felt normal again. I had really forgotten how good it is to feel normal.  I spent my last few months enjoying that good health – I went to California, I played soccer with my children, I cooked a (very) occasional meal, I carried the laundry basket up the stairs by myself, I danced, I threw two Halloween parties, I drank wine (and more!) with friends and family, I chaperoned a trip to the pumpkin patch…I lived. 

At my first visit back to the doctor before I started treatment, he asked many questions about how I was feeling.  I felt great and had no symptoms.  He reiterated that this is one of those rare times where what they are seeing on the scans just doesn’t seem to match with what I’m feeling.  I knew this, because I felt great, but what they were seeing is multiple lung nodules in a person without any apparent lung symptoms.  This bothers me, but I wasn’t thinking about it because I felt great.  Then I started treatment again.

Now I am being reminded every day that I am fighting a silent battle within my body that the odds say I will lose.  Every time I breathe heavy after walking up the stairs I wonder if I am finally developing those symptoms.  Every pain in my abdomen might be tumor growing.  Every deep breath that comes with a constriction in my chest is the beginning of the end.  Now, I rationally know that these pains and breathing difficulties are likely due to the chemotherapy or anxiety but I still can’t stop myself from thinking about them.  I guess what is most difficult about treatment this time is that I am entering it after having really lived for the last two months and now I am reminded that I am working hard to live while my body is dying. 

Thoughts of my eventual death (and I have to say eventual, not potential, because we all die sometime, right?) are ever-present in my mind and make the things happening in my life more poignant to me.  The holidays aren’t helping with this either!  I have spent the last three Christmas’s wondering if this is my last.  These thoughts tug at my heart when I am preparing (I decorate to the hilt partially because of this even when I am tired and want to stop) and I want to make the holiday extra special.  This isn’t a bad thing for my kids and family as I give myself free license to buy them as many presents as I want.  Spoiled doesn’t even begin to describe it! 

I’ve found that the smallest things can bring this emotional turmoil rolling to the surface at unexpected times.  Last weekend I went to a friend’s baby shower in New Jersey.   My husband and I decided to take the kids out of school the day before the shower and make an educational field trip out of the journey there.  We stayed with my sister, Brandi, in Philadelphia and went to the Franklin Institute.  As we were walking through the health and science section my heart jumped in my chest as we approached an exhibit.  It was an interactive aging device in which your picture was taken and a representation of how you would look at different ages was displayed.  I made my family wait our turn for what felt like forever to use this machine.  I know I appeared a bit frantic about doing it and tried to keep my unstableness hidden from my kids and family by displaying an unusual degree of excitement while waiting.   Inside I was desperate to see what my children would look like as they got older.

Needless to say I was disappointed in the quality of the picture and I am still not sure what I was hoping to get from the endeavor.  I know that I would pay an enormous amount of money to get one of those police sketch artists to draw an age-progression sketch (or whatever it’s called!) of my children.  The thought of not knowing them as they age kills me inside.  I don’t know how this picture would help because it would be such a hollow replacement of actually seeing them but my brain can’t let the need for this knowledge go.  I will eventually get over it, particularly as it doesn’t help my children any, but right now I think about it all the time.

The untimely clashing of the holidays with my chemotherapy induced thoughts of death has also influenced what I have thought about giving my children this year.  I’ll save my thoughts on how to prepare my children for my death another time (as if this blog isn’t gloomy enough!), but I have been thinking about what I might give them as something special that they’ll always have from their mom.  For my daughter the traditional engraved locket comes to mind.  I hate to be so ordinary in my giving, but you really shouldn’t mess with perfection.  I still haven’t figured out what to give my son – suggestions are always appreciated.

More important than the gift are the words behind it.  My husband likes to teach our children rather obscure information sometimes.  While the school is trying to teach reading and writing my husband finds it important to introduce physics and theories of relativity.  If you ask my children what is the highest number they will tell you a googol, and then after a pause my son will say, “No, a googolplex!”.  A googol is a term found in physics for a theoretical number that represents the highest number actually relative to human mathematics and theoretical equations (if I’m remembering correctly).   A googol is actually higher than the number of grains of sand on this earth.  The introduction of this number to my children’s vocabulary has led to at least one conversation with a teacher about why my child wasn’t actually wrong when they argued with the teacher’s statement that a “googol” wasn’t a number. 

The introduction of this number has also led to one of my son’s favorite things to say, “I love you a googolplex.” (By the way, a googolplex has something to do with a googol to a certain power or something like that – ask my kids, they know!)  Whatever the meaning of these words, I would consider them on a keepsake if not for the speed at which sayings enter and leave my children’s atmosphere.  Right now, “I love you a googolplex” means a lot.  It may not ten years from now.  My son solved my dilemma of what words to use tonight as he was heading to bed.  I know what needs said.  My heart swelled and broke a tiny bit as he popped his head back in to the room I was in before running up the stairs just to say one last time before sleep, “I’ll love you forever.”      

First off, having cancer should not automatically make someone inspirational.  I’m really not all that great, I just have cancer.  I’d rather be a less inspirational person than an inspirational person just because I had a few cells in my appendix go rogue.  I didn’t choose this cancer and this has never been a blessing in disguise.  It has always been just cancer.   If you think it’s such a blessing, then you take it!  If I could give it back and live a life in which I am more selfish and less aware of the people who love me I would take it.  Because, honestly, I think I was a generally good person before cancer and I loved deeply and knew love from those around me.  Cancer has increased the degree to which that love is demonstrated, but it has also increased the degree to which we all feel sorrow and fear and loss.  Cancer may take my life and the increase in demonstrative love is not worth my life – I had a great family before cancer and I knew it.  Perhaps more people know how wonderful my family is now due to my cancer, but I’m still a bit selfish.  I would take the knowledge of my family’s greatness away from others if it would take away my cancer and give me back my life. 

Additionally, I don’t believe it when cancer patients say they wouldn’t change a thing for this reason or that.  I would completely change many things about my diagnosis.  First off, I would have my appendix removed at a very young age!  I would never choose cancer!  No one really would!  And maybe that’s why I think just being unlucky enough to have cancer is not good enough to make someone an inspiration.  Because at the heart of being an inspiration I feel a choice must be involved.  A choice to make a difference in the world, a choice to change who we are inside, or just a choice to handle a difficult situation (such as cancer) with strength, dignity, continued happiness and grace.  Maybe the choices I have made in handling cancer are inspirational, but so are so many choices that other people make as well. 

There a lot of people who inspire me; the biggest one being my children, although they don’t really choose to do anything other than to be my lifeline.  They are the reason I continue to fight and the reason I choose to live my life in happiness.  They deserve a mom who does what the other mothers do, including volunteer in their classrooms, cheer at their soccer games, plan birthday parties and have a positive outlook about their life and future.  Being depressed and sad doesn’t do them any good so I choose not to do it.  They will always be my inspiration to continue this fight.

Now, I’ll put the sentimental stuff aside and focus on who else inspires me.  There are people in our everyday lives who we rarely think about who should inspire us.  I am in awe of Mrs. K. Hoffman, my son’s kindergarten teacher.  She seems to have a limitless supply of patience and strength in dealing with a classroom full of miniature hoodlums (my affectionate term for my son and his friends!).  She can stand in front of the classroom and multitask with our future in a way that leaves me taking mental notes for my own future usage.  Who knew a quietly hummed, “Bump, ba-da-da-da” could bring an entire room of five-year olds to silence?  The teaching of sight words is seamlessly intertwined with answering random questions about the color of her sweater, assenting to the use of the bathroom, administering mild discipline to the disruptive child, instructing a child to stop tapping their neighbor on the head, directing traffic to the correct colored square to park their butt on, praising the yelled out random recognition of the aforementioned sight word on a school flyer while gently reminding the use of raising our hands when desiring to communicate, and handing the parent volunteer a package of papers to hang up for vibrant display in the hallway.  This is all accomplished in about one minute without breaking a sweat or displaying a loss of patience with this daily process.  To make it all the more amazing she chooses to get up the next day and do it again and the next day and the next year and the next twenty years.  Teachers who choose to work with our children and continue to do it with patience, caring and smiles are inspiring. 

One of the most inspiring people I know is my sister Sarah.  She is a social worker with the Department of Children and Youth in rural PA.  The emotional trauma and heartbreak she sees everyday would bring the average person to their knees.  She sees the worst of the worst and it always involves children.  She tries her best to protect children who many of us don’t ever see or acknowledge – children who are sexually and physically abused, children who are neglected, children who are not loved by the adults around them.  She has had children she has cared about die and she has had to return children to parents who she wouldn’t give her dogs to because the system says she has to.  Her work is so draining that I can hear the tears she is suppressing, feel the weight upon her shoulders, at the end of long day when she calls and says, “Tell me about your day.  I just need to talk about something else for a while.”  She works in a system that ties her hands, refuses to give her the support and backing she needs and blames her when she is unable to complete the paperwork obstacles they place in her way.  She works in a society that displays their lack of caring for the children who need society the most by refusing to pay her a livable wage (she lives in a “bad” part of her town because she can’t afford to live somewhere better), refusing to acknowledge its own failures (she is reprimanded for not completing paperwork fast enough even though she carries a caseload more than twice the size that is recommended), and refusing to change a failing system.  Her department acknowledges a need for three to four more case workers in order to adequately cover the amount of cases that need managed (at one point Sarah was the only one) but the county won’t increase the salary enough to entice new social workers or keep the ones they do manage to somehow hire.  In response to the lack of employees, the department gives all of the work to the few who choose to remain and tells them it all has to be covered because regulations say so and if it’s not covered the social worker is liable if anything happens to a child, the mountain of required paperwork that comes with each case all has to be completed in a timely fashion or you will be reprimanded, and you have to choose between meeting these demands or letting a child remain unsupervised in a potentially unsafe situation.  Sarah and her co-workers/friends choose to return to this ungrateful, emotionally and physically draining, unreasonable work environment day after day because to them it’s not about the work.  It is about the children.  If they didn’t do it, who would?  (I have to give a shout-out to my brother-in-law, Conrad, who is also a social worker with children and youth in MA).  They should inspire you.        

When Matt and I went to California for a week we took a trip down highway 1 to Monterey.  Along the way we passed acres and acres of farmland blooming with the fresh fruits and vegetables we eat every day.  Eventually we came upon a field of strawberries covered with migrant workers.  They were hunched over hand-picking this delicious fruit.  I took the time to really think about those workers and what they were doing. When I take my kids strawberry picking I can last about ten to fifteen minutes bent over, picking berries, before I am uncomfortable, my knees and back ache and I am done with this one little adventure.  Migrant workers  choose to spend day after day, eight hours a day, in the same uncomfortable position in order to bring home minimum wage for themselves and their family.  I can’t imagine that many of us would choose to do that?  It should inspire you.

Doctors and nurses get a lot of thanks for the work they do and the people they help (as they should), but you know who I find really inspiring in a hospital?  The nurses’ aide.  You can’t begin to imagine the things they have to do (and clean up)! And most of the time they do it in a friendly manner.  To choose that profession and then choose to be happy while doing it takes a lot of strength and character.  They should inspire you.  

Inspiration can be found all around us.  It shouldn’t take cancer for people to be able to make realizations about themselves and their life and then change based on that.  We all have the choice inside of us.  Anyone can choose to do inspirational things.  I challenge you to look around and recognize who else in your community and your life that is choosing to do things that inspire you.  Tell them, they will appreciate it!  You might be surprised at what and who you find!

Matt and I met towards the end of my freshman year of college.  He was one year ahead of me and he lived one floor below mine in the same dorm, Tiernan, at the University of Rochester.  I don’t know why it took so long to run in to each other, as several of his guy friends were friends with my friends and I.  Now I share the following story regarding our meeting because I love it, but please keep it from my children until they are older!  I don’t want to be a bad influence!

The first time I saw Matt I was dancing with my college roommate on a table in his friend Beau’s dorm room.  Beau was having his weekly just drinking in the dorm room and hanging out with friends and music party.  Now I wasn’t that drunk or that forward.  The table was actually the circular coffee table drug in to his room from the lounge.  Matt peeked his head in to the room (the party actually extended through several rooms and the hallway) and he caught my eye.  With a drunken giggle I turned to Sarah and laughed, “Oh!  I want him!”  Yep, the first time I saw my future husband I claimed him as mine.  Ha!  I guess I am very persistent in order to get what I want!

Of course, I was also a little shy with guys.  I never even talked to Matt that night.  I just developed a HUGE crush.  (If you ask Matt he will tell you the first time he remembers seeing me was later that night pasted out on Beau’s dorm room couch.  His first thought about me, “Who is that girl asleep on this couch?”  Very romantic.)   In order to follow-up on my crush I avoided actually talking with Matt for a week or so. I just spent more time with his guy friends. 

Shortly after this Matt sighting I started thinking about my upcoming summer soccer season back home.  I quickly realized that if I didn’t want to embarrass myself I needed to get back in to soccer playing shape (I had definitely slacked off and was working on a freshman 15).  I needed to start running again.  With a typical college student time clock (up til 2 or 3 am, sleep until noon or later) I decided the best time for me to complete these daily runs was between midnight and two in the morning.  Now I am not a dumb girl so I knew I needed a male running partner at this late hour. 

I trekked the flight of stairs down to the floor below mine and asked all of my guy friends.  Beau didn’t run, he suggested I ask Matt (who I had never really even spoken to yet).  Jeff was studying, he suggested Matt would probably be a good running partner because he liked to work out.  James didn’t really want to, but he knew Matt liked to run.  Three ask Matt’s.  The stars were aligning! (By the way, Jeff and James were in our wedding).  I hesitantly walked to Matt’s room and tried to be casual when I asked him if he wanted to go for a run (after all I was finally talking to my big crush of the last two weeks!).  He was on the phone when I arrived and quickly said sure and hung up (I would later find out he was actually talking with a girl he had recently met at a party about hanging out sometime – her loss!).

That night we started running together.  We continued running for the next few weeks, four to five nights a week.  After about a 2-3 mile run we would cool down by walking through the campus and just chatting.  A friendship was started with a definite hint of flirtation.  One of the nights I decided to roller blade, instead of run, and if you ask Matt that was the first night he became more interested in me as a potential girlfriend.  I guess I looked cute in those blades! Finally, I realized it was getting pretty ridiculous that we hadn’t taken the next step in our relationship.  He was as shy as me at making a first real move. Let’s just say that I had to make the first actual move  – the first kiss – and the rest is history (or at least saved for a future story!).  My single life was over.  It has pretty much been smooth sailing ever since!     

The only hiccup in the road that Matt and I had, occurred one month before our wedding.  Matt got cold feet!  Yep, one month before we got married, after six years of dating,     Matt had a momentary case of cold feet and thought about calling off the wedding. Now, there wasn’t anything major that had happened in our lives to lead to this (no cheating, fighting, cold-shoulders, sexual dysfunction, or overall anger), just plain old cold-feet and concern about whether he was ready to get married.  Was he making the right decision?

Late at night, about a month before the wedding, he shared his hesitation with me.  I was stunned as there was nothing to indicate this was coming.  I started crying immediately and multiple thought processing shut down in my brain.  I could barely think, so I apparently decided to focus on one thought only.  I rocked on the couch, crying, while chanting, “The invitations have gone out.  The invitations have gone out.”  I know, clearly not the most important thought at the time, but it was the only one I could hold on to.

I lay crying in bed while Matt sat on the couch in our living room.  At one point he came in and said, “I can’t stand to see and hear you like this.”  I told him he better just go back to the living room because I wasn’t going to stop!  The next morning we quietly tip-toed around each other and our thoughts.  I asked him to leave the apartment while we both thought about what this means and what we are going to do.  He packed a laundry basket (he was still a student – suitcases hadn’t entered our lives yet!) and left for his parents (they lived about an hour away).  I couldn’t stay in the apartment right after he left, so I went for an aimless drive and called my parents.

About five hours later I was on the phone with my sister Sarah when Matt walked back in to the apartment.  I quickly got off of the phone and she quickly called my mom to tell her to stop packing.  Mom was about thirty minutes from being ready to start that seven hour drive to me.  Matt was very tentative and asked if we could go for a walk.  We started down our little street and ended up on a park bench in the town square (yes, the town was as quaint as it sounds). Matt held my hand and told me what had happened when he got home.

He spent several hours talking with his parents about his thoughts and feelings.  He said it was great because they both discussed different issues and thoughts regarding love and marriage.  His mom talked with him about love, relationships, and the feelings involved with marriage.  His dad talked with him about intimacy, sex and the reality (ups and downs) of a lifetime with one person.  They put what he was thinking about ending in to perspective for him.  Matt held my hand and told me, “I tried thinking about what my future would be like without you and I couldn’t imagine it.  You are my best friend.”

Needless to say we worked it out.  It was only a case of cold feet, we were both still in love with our best friend.  When thinking about this event in our lives I try to imagine how it happened and how it happens to many people.  I believe that for Matt, the thought of what could be out there was temporarily blocking him from seeing what he had.  It wasn’t until he really thought about what he would be losing, that he realized how important what he had was to him.  I think many people do this.  When making big decisions many people focus on what they could be gaining for the decision.  I think it is just as important to make sure you also think about what you would be losing.  This is not to stay people should stay in unhealthy and unhappy relationships, just that people need to think in terms of gains and loses, not just what might be.

My family is a very supportive one and the cold-feet incident didn’t detract from Matt’s relationship with my family or the happiness of our wedding day.  Both of us are able to truly forgive and forget and respect the feelings that each of us has.  In fact no mention of his dumbass move (as I now call it!) was made by anyone in my family when we came to PA to prepare the week before the wedding in my hometown, aside from one tiny thing.  The day before Matt got his cold feet my father was walking across the farmyard when he did a straight from a cartoon move.  He stepped on the end of a prongs up hoe that had been left laying in the grass and it smacked him in the face.  Yep, it really happened!  As Matt and I drove up to my parents’ house for the first time after the incident we noticed a brand new hoe leaning against the door to the house.  The bright red bow tied around it had a tag that read, “To: Matt, From: Your Future Father-in-law”.  Enough said!

My hands are shaking as I start typing the therapeutic process of getting these thoughts down on to paper.  I spoke with my thoracic surgeon’s PA about an hour ago.  She clarified some of the confusion regarding my surgery path and passed on some bad news that I did not want to receive.  Without going into the phone calls and hoopla of the last few days (even more than what I mentioned in my last post) here’s the bottom line.  The new thoracic surgeon is much more experienced with metastatic lung lesions than the first one I met with.  He has reviewed my scans and does not think surgery is the right option at this time.  He feels that the lung lesions are deep on BOTH sides of my lungs.  In addition, I was informed that there are several more lung lesions than I was aware of.  These new lesions are small (1-2 mm) but are present.  They may or may not represent more cancer (most likely they are, but could be inflammation).  The goal of any lung surgery would be to remove ALL lung disease.  If this is not possible, surgery should not be performed as the overall benefit is not high. 

Given how small the lung lesions are and how deep they are in the lung tissue, the thoracic surgeon would have to perform a lobectomy (remove an entire lung lobe – we have two lobes on our left and three lobes on our right) in order to ensure that all of the visible cancer was removed.  Thus, he would have to remove about half of my lung tissue and this would drastically impact my quality of life and also eliminate the possibility of lung surgery in the future if additional lung lesions are found.  If the lesions were larger he might be able to palpate the lesions during surgery and target his surgery directly to the lesions.  In addition, if time shows that the new lesions are an inflammatory process he might be able to remove less tissue.  Finally, if time shows that the lesions respond better to chemotherapy (i.e. they get smaller), he might be able to do a less extensive surgery.  The unspoken alternative is that the lesions continue to grow and surgery would be of no benefit or a large surgery would be the only alternative.

I will likely still have my abdominal surgery in the near future in order to assess cancer status in the abdomen.  I am waiting to consult with Dr. Zeh about this, as well as about the possibility of revisiting my frenemy (chemotherapy).  My medical management path has yet to be determined, but one thing is clear – false hope.  I feel like the first thoracic surgeon provided me with a level of hope that was not real.  I think many cancer patients must feel this way at times.

I cried to my husband that I constantly feel like I am given hope, only to have it dashed not too long after.  Now, constantly, really means once or twice a year.  I really don’t think about the small things that go wrong.  It’s the big things that stay with me.  After my initial diagnosis and treatment I was given greater than a 90% chance I would never deal with cancer again. I learned to live my life again and one year later my world crashed down when I was found to have cancer throughout my abdomen.  I was treated and hoped for years without cancer again.  Less than six months after treatment was finished I was found to have a local recurrence at the surgery site.  I underwent surgery last November for this recurrence and was told by the physician afterwards that he felt they had got it all, I wouldn’t need chemotherapy and I should expect that this would be the last time we needed to go to surgery.  I had great hope for my life.  Three months later I underwent a routine follow-up PET scan.  I was told a week later I had metastatic cancer to my lungs.  My hopes of a long life were dashed.  Two months ago I was told that in order to live more than two years I would need a lung surgery that was possible at that time.  Today I was told I couldn’t have that surgery.

What haunts me is a dream I had once.  I woke crying from a very realistic nightmare sometime in the last year.  I finally calmed down and whispered the dream to my husband.  I was at my own funeral and everybody was sobbing.  My daughter M was confused and I recall that she was only eight years old.  Awake I was confused about one aspect of this dream, and this one aspect is what I used to console myself at that time that this wasn’t my fate.  In the dream I had died of lung cancer.  I had this dream the night before the PET scan in which the unexpected lung mets were discovered .   I know, realistically, that dreams don’t decide what is going to happen to a person and that many things could have contributed to having this nightmare; however, I still can’t help that it feels more like a premonition than a dream.  I am not a superstitious person (at least I tell myself that), but when my hope is dashed my thoughts are haunted by this dream.  The only thought racing through my head this morning is “How old will my children be when I die?”  I ask it in my head and my head always answers – M will be eight.           

Now I know that this post sounds morose.  I have bad days sometimes.  Please don’t think that this means I have given up or don’t have any hope left.  I’m just having a bad day and that is okay.  I hate to ask this of people, because it sounds selfish, but please don’t call me.  I don’t really want to review my many conversations with the doctors with everyone.  I don’t want to reassure people that I am, and will be, fine (whatever that means).  I don’t want to hear that you just know it will all work out.  No one knows that.  Not you, not me, not the doctors. 

Here is what I do know – while this morning is hard, tomorrow will be better.  I have very few “bad” days and it is okay when I have them.  Even though each time my hope is taken away it feels like I am receiving the diagnosis all over again, I know that I can recover from this blow – I have done it before.  My spirits may be temporarily knocked down but I know I am strong enough to pick myself back up and continue my life as before.  I am capable of finding peace with an uncertain future while continuing to fight for that future.  My children provide me with more strength and willpower than any other thing in this world.  You all can provide me strength with written words of encouragement and support (I REALLY, REALLY like written/typed messages! Sorry, phone calls just wear me out.).  Finally, I am about to leave for lunch with my wonderful cousin, Janee, and living my life in happiness is a choice.  I find that choosing happiness is more important than choosing to dwell on the sadness that could overtake me.  I plan to enjoy my lunch date!

Now, this attempt on my life makes sense financially for the insurance company.  I am one of the types of patients they see in their nightmares.  Young, supposedly healthy, and wham! – half a million dollars in unexpected medical costs that they have to pay because they signed my husband and his family up for their health insurance.  I am the reason insurance premiums sky-rocket for small businesses.  I am also the reason President Obama passed a health care bill that includes a stipulation that health insurance companies can’t establish a lifetime maximum in medical costs that they will pay.  I have to thank him for that – I was getting nervous when I saw how close I was getting to that maximum!  (Now, I will say that we can debate the pros and cons of spending this much money on one person when so many go without at another time.  It is a much larger debate that I would love to have  – you’d be surprised where I stand on this one – but the bottom line is I do cost this much and I have insurance that is paying it. I am not going to tell them to save their money for the next person).

While killing me makes sense for the insurance company, I am not sure why my doctors are trying to help.  I have done my best to not be the nagging, rude patient with limited patience that you want to help meet their maker.  I am persistent and knowledgeable and nice.  I understand that you can’t take my phone call right away and that it takes time to sort some things out.  I don’t understand why my insurance and doctors’ offices’ are doing their best to make this a VERY stressful time for me.  Stress is not healthy.  Stress may make cancer grow.  Stress can kill!

Ok, here goes the story.  I apologize for the rambling and confusing nature of it – it appears to be rambling and confusing in writing because it is just like that in real life!  Seven weeks ago I met with my out-of-network, insurance preauthorization obtained, surgical oncologist at the University of Pittsburgh Medical Center (UPMC).  I get to see Dr. Zeh and have my surgeries with him because UPMC has the only appendiceal cancer clinic in the state.  At my request, because my local in-network medical oncologist suggested it, I asked my primary care physician (PCP, Dr. Pagana, who I haven’t seen in three years) to obtain this authorization.  For some reason the insurance requires that the authorization be obtained by the PCP (who doesn’t treat my cancer) instead of my oncologist (who does treat the cancer).  Oh well, authorization obtained – appointment covered.

While at UPMC Dr. Zeh recommended a lung surgery (if all fell into place medically).  Since we had traveled four hours he arranged for us to meet with a thoracic surgeon (Dr. C) that day.  I knew I was not authorized to see Dr. C and was willing to pay the potential out-of-pocket cost of this visit (I briefly thought it would cost more in gas to travel back down here for a second appointment than to just pay for a brief meeting with the surgeon.  Ha! Was I wrong!).  Bottom line medically– lung surgery was recommended six to eight weeks after stopping chemotherapy.  Bottom line financially – my insurance would not cover the cost of the appointment with Dr. C as I did not have authorization to see him despite my authorized physician recommending this consultation (I was not surprised by this) and the bill was for $500.00 (WHAT!!!! Many curse words following the WHAT!!!).  Now, the thoracic surgeon did not examine me, took my review of systems form I filled out as he was walking out of the appointment and spent ten minutes talking with me.  Five hundred dollars!!!  I think not.  Having the medical background I have I looked at the bill more closely.  The physician billed a Level 4 consultation (out of 5) which I know requires a detailed physical OR one hour of consultation.  A mistake or fraudulent billing?  Either way – I’m not paying it, which I will be discussing with his office in the very near future.

Back to the next step in the attempted murder saga.  The week after my appointment I received my last chemotherapy round – it is now six weeks since I had any chemotherapy and eight weeks since taking Avastin (a chemotherapy drug they did not give me in my last round because of the upcoming surgery).  I did, medically, what was required of me and got a colonoscopy result that indicated I could schedule my surgery.   Three weeks ago I called Dr. Zeh’s office and left a message indicating I wanted to schedule the surgery as soon as possible as Dr. Zeh had recommended.  A day later I left another message.  Two days later I left another message (on a Friday).  On the following Monday I left a fourth message while boarding a plane to sunny California.  Finally, I got a call back – they told me I needed to call the thoracic surgeon to schedule the surgery, not them.  Thanks for ignoring the first three calls and answering when I left a sorta nasty call me or else message. Stress increasing.  Cancer growing. 

I explained that the surgeons said they would coordinate the surgery together (Dr. Zeh working on my abdomen, Dr. C on my lungs).  Oh, they (the medical staff) didn’t know that, they would to talk with Dr. Zeh and call me back.  Two days later I left them a message while driving to Napa Valley.  Stress stable as beautiful California had calmed me down.  Cancer, also, hopefully stable.  One day after my message I get a call back, they will coordinate with Dr. C and let me know soon.  On Friday I leave another message checking up.  On Monday I leave a second message checking the progress.  On Tuesday I get the secretary who explains the nurse scheduler was out all last week unexpectedly and will now be contacting the thoracic surgeon’s office. (WHAT!!!! Many curse words following WHAT!!!!)  You mean, no one has been doing anything for two weeks and it is now the week I was originally told I should have surgery on!  Stress increasing.  Cancer growing.

The next day I do get a call from the thoracic surgeon’s office.  Guess what?  Dr. C has transferred and no longer performs surgery at the same hospital as Dr. Zeh.  One of his partners would be able to do the surgery with Dr. Zeh.  Would I like to schedule an appointment to meet the new surgeon? (WHAT!!! Many curse words following!!!)  I calmly replied, “No.  How many years has he been practicing with Dr. C?  Is Dr. Zeh okay with him?”  After explaining my distance from the hospital I said I was okay with just meeting him the morning of surgery.  When will this surgery be?  Well, I was told, they are looking at October 31^st.  (WHAT!!!! Many curse words following!!!) 

I expressed my dismay at the timeframe given what the doctors had told me at my consultations.  The nurse thought I would need time to get my pre-op CT scan. I assured her I could arrange that for the next day (which I did) so that wasn’t a problem.  I was then told that the surgeons were going to be away at a conference for the third week of October so it would delay my surgery.  Ah-ha, the real reason at last.  The nurse did try to get the surgery sooner and eventually the date was set for October 28^th.  Stress still present.  Cancer growing with even more time to do it as surgery is delayed.

Fast forward to yesterday at 3:30 pm.   M grabbed the mail for me as we were leaving to go watch my dad referee a soccer game (clearly we are die-hard soccer fans if we are going to cheer on the ref).  A letter from my insurance was enclosed.  Preauthorization for the appointment with Dr. C was denied (which I knew already) and preauthorization for the surgery requested by Dr. C was denied (which stole my breath).  They mentioned that they contacted my PCPs office for additional information twice regarding why this was necessary and why it was at an out-of-network hospital but did not hear from them.  I could almost hear the sarcastic “Good luck!” the insurance wanted to put at the bottom of the letter.  Stress is through the roof.  Surgery is supposed to be ten days away.  Cancer growing!!!!

I frantically left messages for all four of my doctors before 4 pm.  I then tried to call the preauthorization review department at the insurance before they closed at 4:45 to find out what they needed.  My call started at 4:05.  I finished listening to the recorded messages and made my selection at 4:13 (eight minutes of info before you can even push a damn button), was transferred to a message that said call a different number.  Called the different number, listened to the same eight minutes of recorded message, made a selection, listened to the phone ring for one minute, put on hold, listened to hold music for about ten minutes, hung up because it was 4:45 and the office had just closed.  STRESS!!! CANCER!!!

My husband tried to calm me last night by saying that it would be taken care of. (How does he know that?)  Clearly, a mistake was made and we just needed information from Dr. Zeh (the authorized physician) explaining why the surgeries should be done at the same time.  He said the point of the joint surgery was to lessen my risk by only undergoing anesthesia once instead of twice and the insurance wouldn’t want to increase my risks.  Ha!  Little does he know that they are trying to kill me!!!!

This morning I finally got through to the insurance company.  More information was needed from Dr. Zeh and Dr. C, but this information would have to be sent through my PCPs office.  Richard at the insurance company also explained that there was another surgery preauthorization pending from Dr. Zeh.  Oh, I thought, perhaps he requested preauth for the lung portion, as well as his, and it would be all sorted out. I asked Richard what surgical procedures were being asked for by the second preauth.  He couldn’t tell me because he didn’t know and suggested I call the PCP.  Stress coming down a little as something was being done. 

I spoke with Michele at the PCP’s office and she told me information was sent the day before but didn’t know if the preauth would cover the lung portion of the surgery, perhaps I should call Dr. Zeh’s office and they could tell me.  She was very sweet and said if there was any other info I needed sent to insurance send it directly to her and she would take care of it.    Ok, so Dr. Pagana’s office isn’t trying to kill me, but it may be because they don’t know me!

So…before I could call Dr. Zeh’s office, Renee from the thoracic surgery office called me back. At my request she said she would talk with Lauren from Dr. Zeh’s office and find out about what the preauthorization covered.  She then proceeded to say that this may not be a bad thing, as the current thoracic surgeon thinks he might need to do a different approach than the first surgeon discussed with me, as the current surgeon thinks the disease on my left side may be more extensive than first thought and he might have to take more of the lung.  Additionally, he is thinking he might want to do it after Dr. Zeh does his surgery since they wouldn’t want to put me through two resections at the same time (WHAT!!!!! Many curse words following WHAT!!!).  First off, thank you nurse scheduler for breaking that knew news to me so bluntly (I said in my head).  Second off, Dr. Zeh wasn’t planning on a resection (at least he didn’t tell me about that); he was just going to look for evidence of disease in my abdomen (which I said to her).  She got contemplatively quiet and suggested I talk with Dr. Zeh’s office about that.  STRESS!!! CANCER!!!

So, here is where it stands right now.  I am waiting for Dr. Zeh’s office to call me back to see if my insurance will cover the lung portion of my surgery. I am waiting for my thoracic surgeon to review my latest CT scan to see if surgery is possible, how he would like to do it and if he still plans on proceeding on the 28^th.  I expect that I will be waiting all day and making more phone calls tomorrow as I think there is a slim chance in hell that I actually get phone calls back today.  I think that they all are just waiting for me to die.  Ok, I don’t really think that, but it feels like it.

Finally, these are the thoughts racing through my head – Why don’t people return phone calls even if it is just to say I don’t know yet, but will let you know?  How can people who have no medical knowledge possibly navigate this? Why is no physician taking ownership of my care? I feel like I am in this on my own.  Why should I be the one expected to coordinate this surgery?  Why would they tell me time is of the essence and then jerk me around when trying to get things done?  Will my insurance even agree to pay for the surgery?  Why does the insurance make every little step so complicated?  If the surgeon decides to do the lung surgery separate from Dr. Zeh’s surgery why would my insurance let me do it at UPMC when there are other in-networks thoracic surgeons?  How long would it take to set up appointments with these other surgeons?  How much would my cancer grow while waiting for these other surgeries?  How much has it grown in the last two months?  Why, when surgery, pain, chemo, and daily thoughts of death don’t make me cry, does dealing with this shit bring me to tears?  Does stress really increase cancer cell growth as some evidence suggests?  Does sugar increase that growth?  How much is my cancer going to grow due to the bottle of wine I plan on drinking tonight?  Why are the people that are suppose to help me, trying to kill me?!

Given my love of the holiday, I am a little confused as to why it hates me.  October has been a bit of a troubling month for me over the last four years.  It has been a roller coaster ride and all I really want to do is have some fun…and dress up…and eat some candy…and decorate with spider webs…and scare my kids (I know, I am a bad parent when it comes to what I find humorous). 

Four years ago, I was ready to escort an Air Force pilot and a skeleton from house to house in order to beg for candy.  It was M’s first Halloween that she actually was old enough to choose her costume.  Being the delicate little lady that she is, she chose to be a skeleton.  I dropped her off for dress-up day at preschool and took a lovely class picture.  Nestled between the nine princesses sat my skeleton.  I love that spunk!  I was looking forward to starting the family Halloween traditions that I had grown up with.  I most looked forward to a time-honored S. family tradition.  Six kids would spread their loot on the floor and the bargaining would begin.  Trades were made for desired pieces of candy while mom and dad helped the youngest negotiate without being taken advantage of.  You quickly learned who liked and disliked what and who was a sucker when it came to trading anything for their favorite piece of candy. You also quickly learned to try to subtly hide your peanut butter Reeses Cups from dad’s sight.  After all, the basic rules of Halloween are that mom and dad can take whatever one or two pieces of candy that they want from your pile.  This was the tradition I was most looking forward to teaching my children.   

Three weeks before this grand adventure I had a routine appendectomy at which time appendiceal cancer was discovered.  I had a right hemicolectomy one week later and slowly limped around the neighborhood on Halloween night while my in-laws pulled my children in a wagon from house to house.  I wanted to pull that wagon but after two abdominal surgeries I couldn’t do it.  Curse you Halloween!

Three years ago I walked my new neighborhood with a witch and a giraffe.  Anyone notice the trend M is taking when it comes to costumes?  My husband and I moved from our home in Lexington, KY to a small town in central PA about twenty minutes from my parents in July less than one year after my cancer diagnosis.  We bought our dream house in a beautiful neighborhood and were overjoyed to put cancer behind us.  Halloween was great (except for the hill we had to walk) and the kids had a blast.  Yeah Halloween!

Two years ago my sister took pictures of a black cat and a bear for me.  They are the only pictures taken of my children that October (for a scrapbooker that is unheard of).  About a month before Halloween I had my first major surgery at UPMC. We learned at the end of August that the cancer had returned and I underwent a major abdominal surgery and heated intraperitoneal chemotherapy followed by two weeks in the hospital.  I came home with an open abdominal wound that required a wound vac that sucked at my wound twenty-four hours a day while we waited for the opening in my abdomen to heal.  It was my first taste of extreme fatigue.  My dad and sister, Holly, came over to our house to help out on Halloween night.  My husband was taking the children around the neighborhood and I was going to hand out candy with my dad.  It was very bittersweet for me, seeing these adorable excited children yet not being able to go with them. Oh well, I was excited to hand out the candy. 

At the first doorbell ring I popped up from the couch to walk to the door, grabbed the container of candy and promptly sort of drifted against my living room wall as black spots and light-headedness overtook me.  I sat down as my dad grabbed my arm and Matt took the bowl of candy.  M was told to answer the door and dad went and handed out the candy.  I recovered and was helped to the couch.  Standing up, walking to the door and giving a child candy was too much for my body.  Dad said he would do it, but I was bound and determined to participate in Halloween.  I made my ways to the stairs by the front door and sat there with the candy.  I left the door cracked so that when the doorbell rang I could lift up from a semi-standing position on the stairs, walk about three steps and nudge the door open.  After handing out the candy, I would gasp for breath while walking back to the stairs and sit down heaving air in and out of my exhausted body.  I handed candy out about five times before I had to let me dad take over.  Curse you, Halloween!

Last year was my best Halloween ever!  I was well past chemotherapy and had tons of energy.  We had spent some time in Lexington visiting friends in early October and I had found a beautiful adult cat mask (think Mardi Gras style) at an upscale store for drag queens (I’m not kidding!) that I was dying to wear.   Given my good health and good cheer I knew I had to really get down for this Halloween.  I decided to throw a small party!  We invited four of closest friends and their kids over for trick-or-treating, as well as my family.  Dad was once again going to hand out candy, but it was so that I could go trick-or-treating with the kids (actually, that was the plan, but my sister Holly ended up handing out candy instead)!  I made all kinds of Halloween related food – Betty Crocker Halloween cookbooks are the best!!!  We had a blast and I LOVED taking an American Indian with a begged for bow and arrow and a  vampire queen trick-or-treating!  Yeah Halloween!   

This year I am wondering why Halloween hates me.  I stopped my chemotherapy six weeks ago (see my very first post on the course of my treatment for more info!) and had a colonoscopy about four weeks ago.  Initial results were normal (as noted in my colonoscopy post – nothing like self-promotion!), as were the random biopsies taken.  The next step in the plan was to schedule surgery at UPMC – exploratory abdominal laproscopy and, if negative, a VATS (video-assisted thorascopic surgery) procedure on my left lung nodule.  I called UPMC two and a half weeks ago to schedule surgery.  Perhaps another time I will explain the run around I got while trying to do this, but let’s just say eight phone calls later I FINALLY got a surgery date today.  Due to a surgical conference that my surgeons will be attending the surgery has to be later than I had hoped for and later than we had originally planned.  You guessed it – the Friday before Halloween.  I will likely be recovering in my hospital room while my mom and sister take my kids trick-or-treating and my dad hands out candy at my house.  I almost started crying on the phone when the nurse gave me the date.  I know my Ninja and Ice Princess (she finally chooses a princess costume but it is black with silver crystals!) will be having fun, so I can smile, but I can’t help but asking, “Why, oh why, do you hate me Halloween?”.

After my cancer was discovered through a routine appendectomy, I learned that I would have to have another surgery to remove the right part of my colon and to assess my lymph nodes.  I was surprised by a visitor in the hospital one day after my surgery.  I am a genetic counselor and have worked with many young women with cancer.  The irony of my early diagnosis, I know!  Anyway, a former patient of mine learned that I was recently diagnosed through a mutual friend and she decided to pay me a visit.  I met Missy M. when her mother was in the hospital dying of ovarian cancer.  The family needed quick testing for the BRCA1 and BRCA 2 genes that cause hereditary breast and ovarian cancer.  Her mother tested positive and over the course of the next year Missy also tested positive and underwent a prophylactic oophorectomy in her late 20’s in hopes of not repeating her families medical past.  During this surgery it was discovered that Missy already had early stage ovarian cancer.  We were all shocked and she completed six months of chemotherapy like a trooper.  Her spirit and resilience was something I thought of when I was diagnosed.  Missy and I have a mutual friend outside of work, although we never really crossed social paths otherwise.  Needless to say I was surprised and pleased when she came to visit me in the hospital. She offered words of encouragement and I was able to ask her some of the emotional questions that I was holding inside.  My biggest question at that time was, “How do you ever get over the constant fear that the cancer will come back?”  Her honest answer stabilized me and allowed me to move to my next step in learning to live with cancer.  She replied, “You don’t.  You just push it to the back and keep going on with your life.”  Hearing that instead of trying to “get over” my fear I should try to learn to live with it was actually very important.  I wish I could say that Missy is healthy and cancer free today.  Unfortunately I learned that at the time of my recurrence Missy was battling her own.  We have traveled parallel paths and I think of her battle constantly.  We are both cancer warriors and angels for each other.

During my first surgery at UPMC I underwent a cancer debulking surgery in which they removed my uterus, ovaries, part of my left colon and most of my omentum followed by heated intraperitoneal chemotherapy.  We were told I would be in the hospital for two weeks at least to allow time for my intestines to start working again after the heated chemo.  My visions of what these two weeks would be like included a day or two in the ICU followed by careful pain management as I lay in bed just waiting for the intestines to kick in.  I thought I would need company for boredom so we brought playing cards, my scrapbooking and an entire basket of “things to do” that my brother, Neil, gave me.  This “joke” basket included an origami kit, wooden paddle with attached ball, stickers to color, silly putty to mold and many more time consuming items.  Let me just say that we were woefully unprepared for the extent of my emotional disturbance, anxiety, discomfort and misery after this surgery.

First off, we were not aware that the heated chemotherapy would make me feel like I was burning from the inside out.  I pleaded with Brandi and Matt to constantly fan my face while I was in the ICU.  Brandi began the fanning and then handed the fan off to Matt when her arm got tired.  At that point he “tried” to fan my face, but I, for some reason, thought he wasn’t doing it right.  I really believe he was blowing the air to the side of me and was not able to figure out how to get it just right.  I cried at them both, “He’s not doing it right. Please don’t let him do it.  I need Brandi.”  Now, I actually have very little recollection of the first week of my hospitalization, I was that out of it.  But Brandi and Matt swear I yelled at them every time Matt had the fan.  My poor sister and husband had to work as a team to make me happy.  Matt propped Brandi’s arm up because it was so tired while she fanned me for hours.

I’m not going to take all of the blame for this, as I developed a bad case of sepsis after the surgery.  I was unaware how sick I was. Actually, everyone but my husband was unaware of this.  He confessed to me almost a year after the surgery that he honestly thought that I might die in those two to three days immediately after surgery.  Being a physician himself he knew what all the tests meant. Luckily, none of us did.  He kept this worry to himself (not even sharing with Brandi, his partner in crime) and waited for the worst.  I cry just thinking about that stress he carried by himself for three agonizing day.  Fortunately, I was able to recover and be moved out of the ICU.  That’s when the other problems developed.

My biggest problem was the NG tube that I had for over a week.  It was horrible.  At least once the nurses forgot to empty the drainage canister which led to immediate painful retching while my mother-in-law frantically called for the nurses and tried to comfort me.  She was an angel.  She promised me prior to the surgery that she would bring foot lotion to the hospital with her and provide all the foot massages I wanted.  And boy did I make her deliver on that promise! I had at least two relaxing foot massages a day.  They were a welcome comfort in the middle of the misery.

My other primary complaints were psychological.  I developed extreme anxiety while in the hospital that led to a full-fledged panic attack.  It took several long exhausting hours before I was granted anti-anxiety meds.  This anxiety has only been present when I am hospitalized.  My medicine also led to very realistic, horrible dreams that turned into hallucinations when I woke up.  I am most fearful of these returning on any future hospitalization. I was sleep deprived and in pain.  That’s where my poor angel of a sister Sarah comes in.

Our original plan was that Matt and Brandi would stay with me for about four days and then Sarah would come to Pittsburgh and be my hospital buddy for several days.  Now I love my sister Sarah, but she is the least nurturing of my female siblings.  Sarah loves us all but will tell it to you straight.  She’s more of a “suck it up and get on with things” kind of gal than a “let me hold your hand while we cry together” woman.  I vaguely remember the day Matt and Brandi were supposed to leave and transition my care over to Sarah. I was laying in the hospital bed while Sarah sat on one side and Matt and Brandi stood on the other getting ready to say their goodbyes.  In my emotional state I grabbed their hands with tears running down my face and pleaded with them, “Don’t leave me with her!  Not Sarah!  Please don’t leave me!”  I’ve been apologizing for a while to Sarah for that one, although I’m sure she understands.  After all, she was sitting there looking at them with puppy dog eyes trying to silently transmit her own pleading message, “Don’t leave me with her!  Not Rachel!  Not like this!”  My guilt trip worked as Brandi and Matt stayed while the only person I did want rearranged her schedule to come to Pittsburgh – my mom.

Now my mom is a very special woman.  She raised seven children in the military while nurturing a host of others.  As adults my mother and I have had our issues.  We are very different people who experience the world in different ways and don’t always see eye to eye.  That said, there are two things that my mother excels at like no one else I have ever seen.  She is a child whisperer (for lack of a better term) and a rock in times of extreme medical crisis.  It’s true that the obstacles people face in their day to day activities can send my mother in to a tizzy, but she can pull it all together when something major happens.   I witnessed her amazing strength and caring when my father lost his hand in a farming accident.  She made sure he was well taken care of in the hospital with a sense of humor and strength in front of him.  She may have cried with us, but before my father she did what needed doing.  I knew that she would be the best person to nurture me in the hospital.  And she delivered as only a mother can do when their child truly needs them.

My mother’s aforementioned second strength is another reason why my mother is an everyday angel in my eyes.  She is able to nurture and support and love even the most difficult child all the while making it look easy.  Children flock to her and she has a talent for handling any situation they throw at her.  I’m sure she learned a lot taking care of her own seven children, but I believe she must have been gifted from the beginning. It is thought that when you have children you respond to people based on how they treat your children, not you.  I will forever be grateful for the way my mother is able to handle my children.  She remains calm, cool and collected when I am about to pull my hair out (figuratively speaking, haha – some cancer humor for you!).  My children respond to her in ways that they do not to anyone else. 

I admire my mother because she also seems to collect children.  She sees the worth and value in every child she encounters, even the difficult ones.  Many of our friends have been adopted in to the family.  My friend, Sean, in high school spent Thanksgiving night at our house because his home was overrun with family.  My sister Sarah’s college roommate, Kat, calls my mother “mom” and uses our house as a place to stay when she travels in our area.  My mother has baked birthday cakes for my sister Brandi’s friend, Ryan, because his family wasn’t around to do it.  Brandi’s college roommate, Lindsey, is an adopted sister who has spent the last several holidays including Christmas as part of our family since hers lives in Florida.  Lindsey even calls herself Number Nine, aka my parent’s ninth child.  My husband married in before she started doing this, thus he is Number Eight.  My wonderful sister-in-law Michele has gotten into many an argument with Lindsey about who is truly Number Nine and who should be Number 10.  The jury is still out and I’m staying out of it!  Needless to say I feel truly lucky to have this caring mother of all mothers in my life!  

Some angels just are there to provide comfort and gift me with their ears and time.  I have had at least one serious conversation with Michele about the things I am doing to plan for a future for my children without me.  I have always been a scrapbooker and I take a lot of time to document every aspect of my children’s’ life.  I am about two and half years behind in scrapbooking my children chronologically. I confessed to Michele that I am feeling the pressure to get as much done as I can as quickly as I can.  I joke with my husband that my new job is to scrapbook.  He humors me and allows me to think that way.  Michele heard my concern and assured me that whenever I was ready we would have a girl’s weekend scrapbooking extravaganza in which the sole goal would be to help me complete my books.  I’m not ready for this weekend yet and I hope I never need it, but I find comfort knowing that the offer is out there.  Michele’s husband, my brother Neil, was an angel when he accompanied me to my chemotherapy treatment one day.  We talked about things that I hadn’t said to anyone including things I would want done if I did pass away.  He assured me that he would see that they get taken care of and I know that I need not worry about these things anymore.  Neil will get it done.

I haven’t talked about my dad yet and I’m saving one of the best for last.  He truly is my everyday angel, as he just randomly stops by almost every day! J  He comes by to give me hugs, have a cup tea, offer to pick up my kids and make sure I am eating.  I think he deserves a blog of his own, so I’m saving for the future.  All I will say is that my father spent much of his time several years ago with his mother.  He retired from the military and decided to farm on his parents land.  He had lunch almost every day with his mother; they each read the newspaper sitting at the table together enjoying a cup of tea.  When she passed away over two years ago my siblings and I worried about what my father would do.  They were each other’s constant companion.  A few weeks after her death my dad showed up at my house around lunch time for a cup of tea.  My sisters and I joked that I became the “new Nam”.  I am glad that my cancer has given us the opportunity to spend so much time together.  At least my diagnosis makes it so that my siblings don’t get royally pissed off that dad spends so much of his free time with me!  After all, we all want as much dad time as we can get.  He’s an angel!        

Oh, I don’t want to forget my cousin Jackie.  Over the course of my treatments she has provided me with words of encouragement, books to read about cancer, books to read to get my mind off cancer and an occasional conversation to ease my mind.  She reached out to other cancer survivors asking them what would be the best thing to help me.  I truly appreciate this show of support.  Most importantly, she has provided me with a venue to collect my thoughts and create a living diary for my children in the future.  Thanks for introducing me to the world of blogging Angel Jackie!