I really wish I had kept my broken genes to myself!

Apparently this has become like a sleeping pill to me.  This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest.  I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself.  The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives.  Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome.  Most of them don’t care to find out, and the few that do, well – I will let you know.  I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon.  The same doctor that has embolized the AVM in her knee 4 times.  The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston.  “We just drained  30 ccs of blood from under your daughter’s kneecap.  I don’t know why it was there.  You should go meet with this doctor and see what he has to say.  He will likely want to put a scope under her kneecap after she has healed.” 

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break.  He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment.  He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did.  And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room.  The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.” 

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee.  Even as I pointed to an obvious bump he told me it was nothing.  I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass.  He told me he reviewed the CD and disagrees with the report.  Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.”  On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months.  They will reevaluate.  Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed.  Shouldn’t have done it, but I cried.  Fatal mistake.  I now look like a complete ass, when that is his job.  And he does it better than I ever could.  He actually had the nerve to lecture me that I would make my daughter upset.  I still can’t believe I took that.  (Still stewing!)  AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing.  I have been working on it for years.  UGH!

You know I wasn’t crying because i was sad.  I actually was really relieved at the thought that no surgery was necessary.  I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee.  The things she can not participate in, or the modifications she has to make just to avoid pain.  She does them effortlessly.  Every day.  No one knows except me.  And it kills me.

So when we were leaving I tried to find the bright side.  I said, “See, at least you won’t need knee surgery this year.”  To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway.  When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

I really wish I had kept my broken genes to myself.

4 thoughts on “I really wish I had kept my broken genes to myself!

  1. Your sleeping pill is my reality check. While I enjoy the blessing at home of two girls who run, and play and smile and will NEVER fully comprehend what their friend Meghan deals with on a regular basis – because like you said, only you know! It reminds me of the daughter that now longer spends her days and nights in my home who suffers excruciating pain with the same kind of grace an humor that Meg does. I find myself checking your blog every day – usually at just before or after I have thought about you and Meg and whispered my daily prayer for you. I am thankful for this blog, our friendship and the bond our girls share. xo

  2. I cry when I am frustrated which I have done a bunch of this week. The kids get scared and everyone thinks I am in some type of pain. Of course it is just pure frustration, annoyance. I feel for you and your daughter..I can not imagine. You are in my prayers. The best to both of you!

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