MPS Awareness Day, Alex 2015

MPS Awareness Day 2015

My First Mammogram

The very first blog I read years ago after my kids were diagnosed with Hunter Syndrome was a blog written by someone named Amy. Amy had a son, maybe two, with Hunter Syndrome, and it seemed to be the severe form.  Amy also had breast cancer but had elected not to have chemo, not to have radiation, and to let the cancer run its course much to the dismay of some of her family.  Amy passed away and her husband wrote a blog about her, and her passing.  I do not know these people but I won't ever forget reading what they wrote.  It was raw, real, and it was a love story. Her husband deeply loved her. I am not going to dramatize what is going on with me any more than I should, I am not that Amy.  That blog though, I'll remember for the rest of my life.

Our sons are very physical.  If you're not ready, holding a catcher's mitt up ready to catch the baseball, you're hit in the chest.  If you're not ready to catch the football being strewn your way, doesn't matter, you'll be hit with it.  I am constantly being leaned on, leaned into, and hit with sports equipment.  As such, I developed a lump in my left breast.  Astronauts in space can see this lump. There's the moon, other planets, and then the lump on my left breast, it could be picked up by satellite imagery.  I don't want to leave you with the wrong impression, it's not distorted or disfigured but you can feel it, it's there.  So, I went to see my doctor and we developed a plan.  A plan that I was happy with, and comfortable about progressing.

The plan was I was going to have my screening mammogram which I was due to have now, or last year.  Apparently, things have changed since I last saw my doctor.  Women are now supposed to have a baseline mammogram prior to turning 40, so that it can be compared to see if there are any changes in your breast tissue.  I didn't know that because it is rare that I am ever really concerned about myself, and maybe they told me this but it didn't sink in in the face of all that is going on with Hunter Syndrome.  Most of my appointments are second priority, I get them done but saving our kids is first priority.  I still make mine a priority just not the highest.  I know I need to be here to help them so I get them done just not on the timeline that is expected.

So the lump was concerning, and Dan was concerned as well but we weren't alarmed.  In I went on a Saturday, filled out my form, and then discovered that because I had a lump that they wanted me to go directly to the Emergency Room (ER).  I said, "no, no I will not.  I will go home, and then I will be none the better, not having a preventative screening or anything."  My sons have a rare disease.  I am lucky I am here to get preventative screening done.  I need this done, please, and then I will do any follow up afterward.  I promise.  Reluctantly, they finally agreed (and I am being nice here, this took a ton of polite fit throwing).  The mammogram wasn't unpleasant.  It was much easier than I expected. For men reading this blog who may have never had a mammogram, you can simulate it by taking a book or a door if you're that brave (that thing with paper, not an e-reader) and slowly shut it on your penis until it's uncomfortably smushed flat (as flat as you can get it).  That's it, that's what it's like and don't move or breath, or dare scream.  : ) You're welcome.

A day later the doctor called, and stated he ordered a diagnostic ultrasound and mammogram.  Not unexpected, so I scheduled and I went.  I met the sweetest of angels who work there. I sat in a waiting room with a whole bunch of other women wearing pink gowns, some sharing their stories of what they had been through.  I felt at peace waiting.  I sat quietly, and observed this world that some of you have had the terrible experience of being in.  Waiting for the diagnosis to come, waiting for those words to be said from a doctor's mouth.  The women working there told me if I ever needed anything to call them directly, they shed a tear for my sons' story, and  were amazed by my strength and attitude. They shared some of their own strength with me.  I was more enamored with them and what they do every day.  One sweet, angel said to me, "you really don't care, do you?  you don't care that you are here facing this scary situation". She was right, I didn't but I was there so I cared just enough.  I have received so much bad news, had to sit in so many chairs, and hear the hardest of words.  It felt like one more chair to me, one more face, some more words, and I had no fear, not in that moment.  You could say but you would have fear when you hear the words cancer, not really I am numb to those words too as I've watched my own father and family deal with those battles in the past but I would definitely prefer not to hear them.

I think it is so considerate that they give you immediate results in the diagnostic clinic.  That is so considerate.  With genetic testing, sometimes you have to wait a month.  We had to wait to hear our son Nick's confirmed fate, and Alex's too although there was strong supporting evidence but not with Nick.  This is what I was given after my mammogram:

PROBABLY BENIGN

I showed this paper to everyone, and told some folks I had confided in what the paper said, "Probably Benign."  I wished at that moment, my breasts had velcroe and that I could detach them, take them to a window in the hospital and say to the staff behind it, "here are mine, they're broken, can I have a new pair?"  So the good news is I will be monitored closely since I have no baseline mammogram they have to take in data and see if things change.  When I tell this story to friends, so many of you, tell me your story.  So lets all just take care of ourselves together, we need to, we need to stop putting ourselves 2nd. People love us, and they need us...we're women, we're mothers.  So follow up, do right by yourself.  I will if you do too.  A voice of a husband helps too expressing concern, and gentle urging.  It helped in my case too.  

Next, I scheduled some minor surgery on my leg.  Since I was on a roll taking care of myself, why stop following up on things years overdue.  For the surgery, I was offered the option of Valium or nothing.  I opted for nothing, and of course there was a local administered during the procedure.  I was a little nervous in the moment, in the room, and it was easy surgery but it made me realize how brave my kids are, they are so very, very brave.  Certainly they have a different level of comprehension than a woman in her 40s but they are so very brave. We do a lot of hard things as parents of kids with rare diseases, we try to figure out ways to comfort them on the way to the Operating Room.  We weigh whether they should get pre-med and not remember going in, or if we should hold their precious hands, wear a sterile suit, and walk them back, hand in hand.  Over time, if we're lucky these needs change, our kids grow, and become more aware and it becomes harder to know what to do.  You can't always be right, and you live and learn but you'll see real fear in the process, and you'll never forget what that looks like.  I recently held Nick's hand, and even carried him back to the OR, and huge tears ran down his face as he knew what was going to happen.  In the moment, I told the Anesthesiologist I made the wrong decision, I had no idea that his awareness changed so much that he could comprehend what was about to happen.  It's an indelible memory probably for more than just me.  Brave children, I am in awe of you.  I promise to try to always do right, and lessen the wrong, but you are my admiration.

Amy