Lessons Learned in 2012

What a year!  Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect.  As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital.  Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be.  The more things change…

In 2012…

I lost the ability to say, “I can’t.”  Instead I gained “Nerves of Steel” attacking this syndrome head on.

I lost my self pity and gained determination watching my daughter start her own awareness campaigns.

I lost my fear of driving on highways and in big cities.  Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.

I lost my fear of ridiculously large medical bills.   Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.

I lost about 3 more sizes, and have finally settled into clothes that fit.

I lost my muscle tone, as wild days kept exercising at bay.

I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.

I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…

I lost my fear of breast cancer and those ridiculous breast MRIs!

I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.

I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.

I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.

I lost my uterus, and my ovaries, but I was done with them anyway,  and I gained permanent birth control and instant hot flashes!

I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.

I lost my old cell phone, and finally traded it in for a “smart” phone.

I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.

I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”

I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.

I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall.  I always loved them with all my heart, but I will remember how lucky I am each and every day.

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

In 2012 I gained tools I will use every day as I move forward.

I gained…

Determination – that we will beat this!

Focus- on what matters most.

Perspective- that everyone suffers.

Forgiveness- because negativity hurts me more than them.

Gratitude- for the kindness of family, friends, and strangers.

Compassion- as I watched my little girl continuously open her heart to others.

2012 had plenty of hard times, but like my car, it was far from a “total loss.”

Here’s to the lessons to be learned in 2013.

Wishing you all health and happiness!

pic collage

Respect the Spleen

I should be sleeping.  It is 1:30 AM.  This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.

Maybe you have been following the saga of my poor spleen… or not.  Either way, my spleen has issues.  Or, rather, my doctors have issues with my spleen.

respectthespleen

The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis.  When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison.  When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen.  Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen.  At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May.  She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen.  Reluctantly, she agreed.

spleen

So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again.  The oncologist looked at the report and ordered an MRI.  I went for the MRI and tried to set up the surgical consult.  The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first.  But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.

So, instead of February… it is now December, and I am waiting.  Waiting to have the fate of my spleen determined.

Well meaning people say to me, “Don’t worry – you can live without your spleen.”

Sometimes well meaning people should smile and nod more, and speak less.

Yes, I KNOW I can LIVE without my spleen.  You can also LIVE without your boobs, your uterus, your cervix and your ovaries.  You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too.  But, just because you CAN do something, doesn’t mean you should.

I am thinking of asking for a fake fish for Christmas.  One that will remind me I have been gutted like a fish this year.  One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!

keep swimming

Monday or Tuesday I will talk to a doctor about my spleen.  I would love to keep it.  I just think we have gotten along nicely for the last 39 years.  And, its mine.  But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.

Heck, I didn’t go through all of this past year to be beaten by my spleen….