Love Like There Is No Tomorrow

My heart is aching for my husband’s family today and, as always, I want to use this paper to release some of my thoughts and pain.  Two days ago my husband received a phone call that his cousin, Ryan, was killed in a tragic accident at Yosemite National Park.  Ryan was 27, he would have turned 28 today.  Ryan was a park ranger, asleep in his tent cabin, when a severe storm knocked a tree down that killed him.  He is survived by his mother (my father-in-law’s sister) and father (Kim and Ralph) and a younger brother and sister (Erica and Aaron).  I cannot imagine the shock, pain and grief that they are experiencing right now and I am moved to tears thinking about their turmoil and loss.  Please pray for them and the entire family.

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.

My Cloak of Protection

Well, another Christmas has come and gone and, like every year before it, it was fantastic!  Christmas has always been my favorite holiday.  We have so many fun family traditions that I love to dive into.  I also LOVE giving presents.  Once Matt and I became financially stable I started my annual tradition of buying too much for too many people.  My husband just groans (and occasionally gets angry) but I ignore the beast and continue my shopping extravaganza.

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!

What My Teeth Taught Me About Hope

Who knew dental work would cause me to really examine the level of hope I have for my future.

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 Love You a Googolplex

Well, here we go again.  I started taking chemotherapy again about two weeks ago.  This time I am back on Xeloda, an oral chemotherapy agent, in addition to an infusion of Avastin every three weeks.  I take four pills, twice a day, for two weeks and then take one week off.  This is the regimen I took when I started my cancer treatment in Kentucky four years ago. I’m not sure how I feel about going back to the drugs that didn’t work the first time.  I guess I’ll stick with the thought “if at first you don’t succeed, try and try again”.

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.”      

 

I’m Not That Great, I Just Have Cancer

After my last two posts I heard from a lot of people and many of them used the same word over and over again – inspiration.  I thank you for applying such a lofty term to me (which makes me a bit uncomfortable), but it really started me thinking about why people place this term on people going through a cancer diagnosis.  I think, perhaps, the cancer just gives me a voice that reaches many more people.  After all, my thoughts and behaviors haven’t changed that much since I was diagnosed with cancer.  Not that I’m not appreciative, but what have I really done that makes me such an inspiration?  I think, perhaps, we, as a society, throw this term around with too much ease and not enough appreciation for what it really means.  I wonder if we ever really look deeply at who inspires us and why.

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!

The Beginning and End of My Single Life

I thought I would blog about something good today – the beginning and end of my single life.

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!

False Hope

False Hope.  The absolute worst kind of hope.  I feel like I have been slammed with this several times throughout my battle and each time it is harder and harder to recover from.  Obviously this is going to be a hard post to read – I feel like I should give people a bit of a warning.  But, please, if you start reading, don’t stop.  I have a message to give that needs to take up the entire post. 

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!