+100

Today is a HUGE milestone for transplant survivors.  In a way, today my transplant survivor status is official.  It's Day +100!!!!!

I can drive.  I can prepare food.  I can change diapers.  I can be in my home without adult supervision of any kind.

My post transplant scans all came back clear which was pretty anti-climactic.  We knew they would be.  I just can't get myself to feel much of anything about it because right now I can't get past the fact that my remission can be taken from me at any time.  I'm trying to focus on the positive and there is SO much of that in my life.

I'm learning that when it is most important for you to be optimistic, it's also the hardest to be optimistic.  So, in honor of reaching the +100 milestone with Bone Marrow that functions pretty darn well and without being re-hospitalized one single time, I present you with a list of positive thoughts:

• There is no reasonable explanation for why I made it 100 days without having a single fever.  I had to go to the hospital 4 times during my first line treatment to have blood cultures done because I had a fever.  I went into labor with Avery because of a fever.  Somehow, this time when my immune system was WAY WAY WAY more compromised to the extent that I as not allowed to handle dirty laundry...not one single extra trip to the hospital.  In a house with 6 small children where the baby plays in the toilet, the garbage, and plays "Ice Bucket Challenge" with the dog's water bowl.  In a house with a potty training 3 year old boy.  That's crazy, and that's pretty awesome.

• My husband is such a hard worker and such a super smart man that he was able to provide not only the medical care that I required but also Nannies 4 days a week so that I would be able to follow all my post transplant restrictions in a house with 6 kids who are home all day.  

• I live in a town and a time where I have access to world class healthcare a short 20 minute drive from my home.

• We are surrounded by friends and family who have supported us from the very beginning of this ordeal.

• I get to go back to Pilates tonight and get back to swimming my laps this week.

• My hair is really coming in and my eyebrows have come in so well that I have to pluck the ones that step out of line.  100 days ago I was completely cueball bald and had about 9 eyebrow hairs total and no eyelashes at all.

• Regardless of the what the future may hold, I have this time with my family, right now.

There's a thing among transplant survivors where you post a picture of yourself on Day +100 so here it is, from my grainy cellphone camera, taken by my son Owen:

Hair: check.  Eyebrows: check  Eyelashes: check  Functioning Bone Marrow: check

Thank you everyone for your prayers, love, and support as I continue to walk this crazy cancer road!  Day +100 is not what I thought it might be, but it's still pretty darn good.

14 Days, 26.2 Miles, and 35 years

So...this is awkward.

I've been hiding from you which is not very nice considering how kind you all are to me.  The short version of why is that:

a.  cognitive function not in the crapper anymore but mostly at capacity with daily life
b.  living with my husband and kids again
c.  the longer I wait to write the weirder it feels to start up again

I was also approached to do an awareness post in September and I had a big mental panic attack because I'm SUPER conflicted about disease related awareness and so I just went into a mental bunker to hide from the whole thing.  Then I felt guilty that I didn't do it.  Then I felt guilty I didn't do awareness posts for ALL THE CANCER!!!  Now I decided to put on my big girl pants and give my adoring public what they want...half baked ramblings and haphazard punctuation.

14 days until Day +100

Today is exactly 14 days until I'm 100 days past transplant.  Starting day +100 I'll be allowed to do all kinds of things like drive, change diapers, handle raw food, and handle dirty laundry again.  I've already signed up for my first volunteer shifts at the kids' schoolish.  I cannot wait.  My recovery has been slow but steady.  My germ fighters (ANC) were fluctuating quite a bit for a while and I was having to get weekly growth factor shots.  I finally stopped the shots 2 weeks ago and had a pretty good count so hopefully that will continue.  My platelets and hemoglobin are good which is really nice, they're usually the last to come up.  Waiting for your blood to accomplish things is weird.  You feel like there is something you should do but other than eat and be active you're pretty powerless (really cruncheroos, sorry).  When it comes to germ fighters you're totally in the dark about whether you're improving or not, I've never been symptomatic (bleeding nose or gums) when my platelets were low, but oh my goodness, I could predict pretty accurately where I was on the scale for hemoglobin just based on how I felt.  My hemoglobin is on the low end of normal right now so I'm feeling great.  

I'm starting the re-staging process this week.  CT Scans on Friday and then next week PET scan, cardio/pulmonary test and DEXA scan to see how my bones weathered this storm.  My guess is my bones are fine because they have me on enough Calcium to cure a horse with osteoporosis.  

26.2 Miles for The Leukemia and Lymphoma Society

Yesterday, my best friend from middle school and dear friend for life, Dr. Joelle Taylor, finished the New York City Marathon in 4 hours, 19 minutes, and 49 seconds.  In the process of preparing for this incredible accomplishment she raised $4,655 for The Leukemia and Lymphoma Society.  She ran in my honor and I am deeply humbled and grateful.  Joelle, I am so proud of you and I am so grateful for your love and friendship!

35 years

On October 25th, I turned 35. 

 Remember in elementary school when you learned to round to the nearest 10?  5 or more in the ones place and you round up?  Well, Michael is 3 years older than me and so I've mercilessly teased him since he was 25 about "rounding up".  It went something like this..."You're so OLD, you're not 25 you're really 30!  You have a wife and a house and your age ends in 5 so round up!"  Super funny Nella.  That used to seem like a funny joke when we were dumb kids.  So anyway, we've been teasing each other in this manner for a long time.  

This year Michael gave me the old speech about rounding up (haha!  You're really 40!) and I realized that while it's not a guarantee, statistically there's a decent chance that rounding up is the closest I'll ever get to 40.  My chances for surviving the transplant were good, but the truth is that my chances of surviving this cancer for 5 years are not the kind of odds that make you feel awesome about the future. 

It's weird how our mind boxes things up without us really knowing.  After I found out that I had relapsed and went through the initial whirlwind, my mind became very focused on the task at hand and not on my prognosis.  As each step of treatment intensified I became more and more consumed with the tangible steps in front of me.  In the last few weeks as I've felt more and more healthy and my recovery from treatment has become less and less of a full time job, my mind has opened a door that looks like this:

Fancy bloggers with discipline would have photoshopped this to read:  "Don't Open, Cancer Inside"

One day a few weeks ago all of these really scary statistics that my mind had cordoned off behind yellow tape and razor wire were released back into my thought stream.  Now that I've survived the transplant process I'm back to thinking about cancer.  That may seem weird because how could you be at a cancer hospital and not think about cancer, but to get through something like the transplant process I really needed to focus only on that and not on the actual cancer stuff.  

I can't hide from the truth anymore, which is that the chance that I'll still be around and Lymphoma free in 5 years is 50%.  50% is actually being a little generous based on how quickly I relapsed last time and some other factors.  That's a lot of reality to deal with.  Truth is, sometimes I'm ok with that and sometimes I'm just not.  

Please do not mistake this for not having a positive attitude.  I've realized  through this that many people think that a positive attitude is some kind of magic spell that makes everything just work out.  I'm here to tell you that that is not why a positive attitude helps you when you're sick.  A positive attitude doesn't have much control over whether or not cancer grows in your body.  What a positive attitude does is makes you swallow your pills when you don't feel like it and you're tempted to think "What difference does it make?".  It makes you get out of bed and get dressed and go to the hospital when you feel like you just can't face that place again.  A positive attitude makes you keep moving when it's just so hard.  A positive attitude doesn't involve avoiding reality.

Michael and I have adopted a policy of "expect the best and plan for the worst".  We've started researching the most commonly used treatments for 3rd time relapsers and evaluating clinical trials.  I already have a list of questions for when I return to my Lymphoma Oncologist at day +100.  I may still have some treatment to go, even if my scans are clear, which they should be.  

I can't be positive that I'll make it to 40 because I know about math, but I can be positive I'll fight like crazy to get there.  

Getting old is the best thing that could ever happen to me.

What I'm Trying To Accept About Michael's Second Wife

This is my most favorite picture from our Wedding.  My sister in law Ruth took it and I keep it in a frame by my kitchen sink so I can look at it all the time.  It's our first step into married life.  Corny, I know, but I love it.  It's sustained some water damage because it's near the sink.  I'm kinda sad it's like that but I'm proud that we've been married long enough to have a wedding photo that needs heavy duty restoration.

Today Michael and I are celebrating our 12th Wedding Anniversary.  (Are you sure Nella?  That is a really uncomfortable title choice for this occasion.)  Relax, if you're reading this it's Michael approved.  The day Michael and I got married I had all of the normal arrogance of a young bride and I was sure that NO TWO PEOPLE IN THE HISTORY OF THE WORLD HAVE EVER LOVED EACH OTHER AS MUCH AS MICHAEL AND I.  EVER.  It never occurred to me that that was not really possible.  I mean, deep down I still believe we're definitely in the top 10 of the history of the world, but I realize I may have been overshooting the mark a bit.  Many other people can be madly in love and that does not detract from how much we love each other.  Duh.  I know.  The idea that's harder to accept is that if one of us were to die, the other person could fall in love again, and that also would not detract from our love for each other.  Yuck.  I'm sorry but I'm not mature enough to like that idea yet.  I'm marginally mature enough to aspire to like it though, because Michael deserves the biggest truest love the human heart can manage.

Because of cancer I've spent some time thinking about what might happen for Michael after me.  Have you ever seen those stories on the Today Show or whatever about these married couples where they each lose their spouse to some illness and then find each other and get married and blend their families and live happily ever after?  Oh and P.S. they were able to have peace about it because one of the deceased spouses left the remaining remarried spouse a letter or video or something saying "It's OK, I love you I want you to be happy" because they are not selfish childish jerks and they are courageous, kind and loving?  I've seen them too and I want to like them but I hate them because it makes me realize I don't think I could do that.  At least not yet.  I want to be able to love Michael that much, that selflessly--but not yet, don't worry.

My "book club" can attest to the fact that this has been on my mind tormented me for a long time way before I knew I was sick and I have delighted them tortured them with hilarious monologues semi-delirious rants about just what I would do to Michael's second wife if I died.  You read that right: what I would do to her.  When I was dead.  Because I'm literally that childish and crazy.  Thank goodness I at least have the luxury of only having to navigate this second wife thing after I die.  If I had to do it when I was alive I would end up on 48 Hours or Nancy Grace.  Anyhoo, I have devoted an unhealthy amount of time to contemplating the best plan for when I meet this horrible jerk face lady.  Because I hate her hypothetical guts.  Luckily for her the whole idea is so upsetting for me I can't get a better plan together than "Play it cool when you die so God lets you into heaven and you can hang out by the pearly gates and when she finally dies and she's on her way you can lurk behind some puffy clouds or a burning bush or something and when she comes flying along with her stupid shiny new wings and her dumb holy new smiley heaven face BAM--celestial two by four upside her dumb perfectly restored head.  Then I get kicked out.  Of heaven.  Which is very bad.  So...I need some serious work and I don't mean on the plan!  I mean on me.  On my heart.

I just love Michael SO MUCH.  So much that when I really think about it I can hardly breathe.  The thought of him falling in love with someone else, even after I die, is physically painful.  I love him so much that I can't stand the thought of not being with him forever and ever amen.  He is the love of my life and the best friend I will ever have and we have been through SO MUCH and built SO MUCH and now this broad is going to come traipsing along and...and do what?  Love an amazing man?  Who deserves to be loved?  Who I promised 12 years ago to love and honor all the days of my life?  How am I loving and honoring him all the days of my life if I am begrudging him what is best for him for his WHOLE life no matter what that entails?  More than that, how am I loving and honoring him if I'm spending even one minute of the time that we are together thinking about this hypothetical woman?    

If I'm being honest, part of the reason I hate her is that if I were to kick the bucket before him and he were to remarry, that means she's walking around out there right now.  And seriously?  That's pretty threatening.  Someone could be walking around out there who Michael could love.  Ouch.  What if he met her too soon on accident?  What if we know her right now?  Well, ouch again.  But what a narcissistic fear to cling to, and how horribly disrespectful to Michael.  Aside from the fact that the only loving choice is to pray that he could find love again, I'm disregarding that Michael promised to love and honor me 'til death do us part.  So even if he did meet her before I died it wouldn't matter.  He is a good man.  He is an honorable man.  He promised to be true to me and that should be all I need to know.  It IS all I need to know.  I married a good man who promised freely to be true to me in good times and in bad, in sickness and in health.  He didn't just say those words because he was told to, he has lived them everyday for 12 years even though the bad and the sickness have been more than our young naive minds could have anticipated on our wedding day.  This is not a man who should have a wife who would begrudge him love and companionship for his whole life because she is too selfish and insecure to truly want the best for him at all times, no matter what that means.  

So.  Someday, when I'm 90 and Michael and I are on our porch somewhere and I'm practicing my shuffle off to buffalo tap step in my fringey dance costume and my best wig and I lose my balance and fall off the porch and it's literally curtains for me, I hope I'll be prepared.  I have no doubt the rest of those old bags in my dance troupe will be circling Michael as soon as the crudite is put out at my lovely bereavement brunch.  They will have seen that he's a good looking guy for 93, doesn't talk much, is quite tolerant of too much talking, and will come to tap dance performances if there will be food and he can bring his puzzles.  They will know he has loving children, grandchildren, and great grandchildren and they will know it is because he is such a good man.  Those ladies will know they'd better capitalize on the fact that Nella is out of the picture, because even at 93, Michael will still be a man many women would give anything to share a life with.
  

I know I can't attack Michael's future wife in Heaven because that's not how Heaven works.  Heaven is a state of being in perfect union with God who is pure love.  If I can get in there, I will be able to love purely and freely in a way my puny human mind and heart can't understand right now.  If Michael ever remarries, I'm going to trust that God will have mercy on this poor sinner and see that I love Michael as much as is humanly possible and He will  help me to look down from heaven and smile and tap dance and rejoice that he is loving and being loved.  If I love Michael as much as I promised I would, it must be my most desperate hope everyday that his life is always the very best God has in store for him, no matter what or who that might mean.  If I truly love Michael I have to let go of this impulse to make our love about me, when it should always be about wanting the greatest good for him.

We are 12 years into this crazy life together and they have been 12 years that have included the greatest pain I have ever known, but also the greatest joy.  They have been 12 years of stretching our hearts to accommodate the love that continues to grow in our marriage.  Heart stretching can really hurt, but it always pays off.  Michael and I have decided (or I have proclaimed and he concurred) that we are going to celebrate our 75th wedding anniversary together someday.  I will be 96 and he will be 99.  So I guess I'll be 96 when I tap dance off the porch.  Poor Michael will probably be thinking "How did I get mixed up with a crazy broad who was stubborn enough to think she could still shift her weight from foot to foot that fast at age 96?" and then he'll probably shake his head and fix my wig  before the paramedics get there because he is the best.  Hopefully 63 more years will be enough time to love him as much as he deserves, to bless him just barely enough for how much he has blessed me in only 12.  Hopefully I'll stretch my heart enough in those years to make it to heaven devoid of the impulse to search for a celestial two by four, because Michael deserves every ounce of love the human soul is capable of this side of heaven, and so much more.

Happy Anniversary Michael, from your future geriatric tap dancer.  I love you so much and will work hard everyday for the rest of our lives to love you more.  

  

Happy Father's Day To Our Quiet Hero

We love heroes.  We love people who get shot at, and run into burning buildings, and shield children from mad men with guns, and jump into raging waters to pull someone to safety.  As we should.  Most young men harbor fantasies of someday participating in this sort of adrenaline fueled pursuit with all of the fanfare and news articles and awards that will follow.

We have a hero in our house.  He has never been called to do some big splashy dangerous act that would be obviously heroic.  He doesn't get attention for the things he does.  But he is a hero to us, everyday, whether anyone sees or not.

Michael is our hero because he puts us first.  Always.  He has accomplished so much in his professional life, but you would never know just how much he's accomplished by talking to him or looking at our life.  He worked for 6 long years to earn his Ph.D. in a demanding field--10 if you count the undergrad he had to finish first.  Do you know he never makes anyone call him Doctor?  He never introduces himself that way.  He's just Mike.  Holy moley, if I worked all that time to earn that title I don't think I could be so quiet and humble about it.  Not only that, but he is so good at what he does.  He is so successful and earns a lot for it.  You wouldn't really know by looking at our lifestyle because security is more important to him than having toys or appearing successful.  He drives a rusty 11 year old Chevy Malibu even though he doesn't have to.  He doesn't have a boat, or an RV, or go on golf outings, or fancy vacations, even though even with six kids he could.  In his position most people would.  He does it because he cares more about knowing we would be ok even if he lost his job.  He does it because he cares more about being prepared for things like cancer or an accident or whatever.  He lives a life that looks far less successful than what he has earned because it's more important to him to know we are cared for no matter what.  He's willing to look like he has less just so that we can ultimately have more.  

He is a hero because he sets an example of what it means to be an honorable man.  He shows our son everyday what it means to be an honorable man, a good husband, and a good father.  He shows our son that the strong protect the weak in ways big and small.  He shows our son that success is not about what people see on the outside, but the choices you make that nobody sees.  Our girls will know what to expect from the men in their lives, because he sets the bar so high for himself.  Our kids will know that the measure of a man is humility, patience, hard work, and faithfulness.  They will know that a good man is not embarrassed to  show he loves his wife and kids.  They will know that a good man doesn't sacrifice for his family and then lord it over them.  They will know that a good man gives everything he has to his family out of love and gives it freely.  They will know that a good man accepts that a truly loving father will sometimes have to accept their rejection because his duty is teaching them right from wrong.  

Michael has heard that he was becoming a father more times than most men ever do.  As the sole breadwinner, that can be scary news.  When you're already exhausted and knee deep in chaos it can seem like you'll never sleep or pee by yourself again.  But from the moment he hears that they are coming, even if in that moment he's less than rainbows and unicorns thrilled, he chooses to love that child.  He loves them and would do anything for them.  Rather than measure the sacrifice that they mean, he loves them and is devoted to them immediately and without reservation.  

He is our Daddy.  He is our Hero.  We will never be able to repay him for all he does, and he doesn't care.  

Happy Father's Day Michael!  We love you!

It Would Be Dumb To Have A Bad Attitude, Part 2: Look At My Life!

*Major sappy sap alert.  I don't care.

Seriously guys, look at my life.  I was born in the 20th century to two loving, educated, middle class parents. I've had every advantage necessary.  My parents always put us first, even if it meant we acted like we hated them for it.  I benefited everyday, and continue to benefit from the stable loving home they provided based on a strong marriage that was rooted in their love of God.  I've had good food, good medical care, a good education, you name it, from day one.  I have 4 siblings who bless and enrich my life.  My parents, brothers, and sisters love and support me constantly.  My parents come over after work so that I can rest.  My baby brother who is 20 now and not a baby anymore is over here all the time helping out.  My sister Jill will be moving near us soon and will be here all the time to help out.  Where in there is anything that gives me the right to have a bad attitude?

My husband.  Oh dear, my precious, precious husband.  My very best friend.  Our rock.  Our hero.  He provides a life for us that is downright luxurious.  We have a beautiful home, food, clothes, transportation, great medical insurance, the ability to choose any education setting or resource we feel is best for our kids, etc.  He provides for us so well that I can stay home with our kids and he does not begrudge us that for one second.  Not only does he provide this life for us while using his intellect to help others, he is a wonderful husband and father.  He is our everything and he gives everything he has to us so generously everyday.  He puts up with my craziness, he tolerates my weaknesses with patience and compassion, he laughs with me, he holds my hand and listens to me cry.This was true before cancer and it is true now.  Now that his wife is exhausted a lot he comes home from work and does the Daddy things and the Mommy things and actually does it better than I do.   Seriously, does that sound like a person who should have a wife with a bad attitude?

My babies.  We are blessed to be entrusted with 5, soon to be 6 precious people.  They peel the layers of our selfishness back day after day.  They make us laugh.  They love us and each other.  They're adorable.  Watching them grow is the toughest job I'll ever love.  I'm so grateful it's me that's sick and not them.  They need to see Mommy and Daddy being positive.  They will learn from this situation many important lessons about how to face adversity.  It is my job as their mother to set a good example for them.  A bad attitude is not a good example.  It will not make them feel safe.  It will not show them how to face the challenges that will inevitably come as they grow.  

I have a beautiful, diverse, generous group of friends who have been covering me in prayer, bringing us meals, watching kids, and being great listeners.  My freezer is overloaded and every time the slightest daylight is visible it is instantly blocked out by more delicious meals to feed my family and to take the load off of Michael and myself.  They have sent notes, food, flowers, edible arrangements, money, and so many other gifts and kindnesses that it is impossible to enumerate or to ever repay.  We have received meals even from people who I've barely spoken to since college.  I was a despicable human being in college.  I was a narcissistic mean girl who was just a disaster.    If I could go back in a time machine I would punch her in the face.  That time, when I was so yucky, was the only time in our lives we even crossed paths and still the blessings flow from all over, from friends and those who are not so close.  

And then, AND THEN:   How can I have a bad attitude when things like this arrive in the mail the day before a chemo treatment:

Yes, that is a Wonder Woman backpack.  You can't tell from this photo but it has a CAPE.  It was full of chemo comforts like a super soft cute blanket with a RUFFLE EDGE, books, games, candy, and cute socks.  Bad attitude?  With a back pack like this and friends like this?  How dare I.  I could not, I will not.

People I don't even know are praying for me and thinking of me all because of the beautiful people who surround me and reach out on my behalf.  My mother came over today after work and told me about a beautiful gesture her coworkers extended today.  My mother goes to 6:45am Mass most days before work.  One of her friends, another teacher at her school, knows this.  She spread word around the school and when my Mom arrived at Mass this morning she was surrounded by coworkers who stayed with her, prayed with her, and offered her their support.  With people like this in the world praying for me and supporting the people around me, how can I have a bad attitude? 

My life is so incredibly blessed.  Those blessings did not stop because I was diagnosed with cancer.  Those blessings are no less real nor are they diminished because I was diagnosed with cancer. They have become even more magnified in my consciousness.  So I have cancer.  So what.  Look at everything else I have!  Look at the love and beauty in the world.  It is there even though I have cancer.  Because I have cancer, I can see it even more clearly.  Bad attitude?  That would be dumb.