pairofgenes

The good, the bad and the inevitable…

In Uncategorized on February 26, 2012 at 2:04 pm

So this week can be categorized as an emotional roller coaster complete with 100 foot drops that make you hurl all over yourself and whomever might be in close proximity.  With that said, while the news isn’t stellar, it isn’t the worst news either.

To begin, papa BRCA, my dad, is going to have to undergo another surgery, he does in fact have another cancer in his ureter and so that, plus one kidney, has to go.  While the kidney does not show any signs of cancer, it’s connected to the ureter so they are basically a package deal where removal is concerned.  He’s fairly philosophical on the matter.  Although he doesn’t love the idea of having to have another large surgery and spend four or five days in the hospital, he’s glad that it’s only the kidney and the ureter that have to go.  He has always said that he not only views the glass as half empty but that someone has pissed in his- but in truth, this is some serious ‘glass half full’ perspective when you focus on the organs being left as opposed to those they are taking.  Now, it’s entirely possible that he skews the conversation so that his BRCA twin daughters (these kinds of twins don’t come with special powers, we are not taking the form of icebergs or rain clouds) don’t bemoan our fate and retreat to cells padded by layers of our own self-pity, but I don’t think that’s the case.  I think now, maybe more than ever, he’s glad they caught it, that they can get to it, and that post surgery he will be cancer free again.

On the good news front, Missie has finished her six rounds of chemotherapy and her last dose seemed to be easier than the one that preceded it.  She thinks this is primarily due to the fact that she was given extra fluids during her last chemo transfusion.  My former mother in law insisted that drinking a ton of water before, during and after each session of chemo made her recovery from each blast much easier, so file that away as one of the simpler rules to follow should you ever have to undergo chemo.  Now she’s going to take it easy for a bit, then do a big antique show in Texas before beginning radiation, which she is confident will not have any adverse effects.  I’m with her- I think the worst is behind her and that once this poison finishes making its way through her system her health and her new head of hair can reemerge better than ever.

And what’s new with BRCA carrier number three- that’s me.  I have begun scheduling my pre-op appointments and today when  I called to set up with two of my three surgeons, the office assistant informed me that my surgery is now scheduled for the end of June.  I was floored- I knew that sooner or later a date was going to come down the pike, but it seemed like a very far away date until she said it aloud and I put it in my calendar.  I hung up the phone and proceeded to tell my office mates that I was fine, but over and over again, I’m fine, I’m fine, I’ll be fine, it’s fine…I clearly did not appear fine.   What followed were a couple of emails, one of the most important to my ex-husband so we can begin planning how to bring my son along on all of this.  And this brings me to a larger topic.

To tell or not to tell one’s kids what the hell is going on- especially when there are genetics involved.  Let me preface this by saying that I don’t think this question is cut and dry or that any two situations can be handled in the same way, but I definitely have an approach that I live by in these matters.  One year when I was on the MS challenge walk- a walk where I have the opportunity to swap stories with lots of people dealing with the same issues I have faced, a woman suggested something to me that I have chosen to live by.  She said that because MS is such a mysterious and elusive disease by it’s very nature that she found that the more detailed information she could grant her 8 year old daughter, the more comfortable and at ease her daughter became with the struggles inherent in a chronic illness.  I decided to sit down with Santiago and explain to him what MS is and how it presents itself in my particular case.  He is clearly not afraid or even anxious about my MS.  On the contrary, he speaks about it with great authority.  Anytime someone brings up white blood cells he asks if what they are speaking of is related to MS- he is a seven year old expert in auto-immune diseases.  One might think this is too great a responsibility, but I have found he is far more at ease with knowledge than he is with secrets.  With the BRCA genes though, he has enough of an elemental understanding of genes to know that if Sabba (his grandfather), Aunt Missie and mom have something, that it means it could be passed along to him- so what to do.

I knew that the surgery was too large and would infringe too much on everyday life to not clue him in on the entire truth.  He now asks immediately what illnesses are related to the genes and which are not.  When we thought my dad simply had a kidney stone, he wanted to know if that was BRCA related and I insisted it wasn’t- looks like my seven year old has a better sense of these things than I do.  But I have found that by being frank with him, letting him know what this surgery entails and why it has to happen now, that he has settled into the idea that things will be difficult for a period, then I will be back to normal, whatever that means.  He has taken charge of things around the house that he has always allowed me to do for him, and today while at a soccer tournament two of the moms remarked that he insisted on setting up our chairs for us while I was signing in because it’s his job to help me out.

At the end of the day, even though I want desperately to protect and take care of him, I know these are good lessons and I know he is going to be a compassionate human being for having had to weather this storm.  I would take it from him if I could- just like any parent, but these are the facts, mam, and this is how I have chosen to live with them.

In terms of his asking about his own risks and DNA, and of course he did immediately because he thinks like a twenty year old as opposed to a seven year old, I assured him that if he chose to get tested, and as a man it’s not certain that he would, that he won’t do so until at least the age of thirty, so these problems can be categorized as grown up problems.  I explained as best I could that even if he has the genes, it just means he’ll have to be more diligent about check ups than most people, but that’s really the extent of it.  Knowing his Sabba’s history with cancer, he didn’t quite buy it, but he was willing to set that aside for the time being.

I’m not going to lie- these things test me as a mother and the cocktail of shitty genetics I have scare me in terms of my son’s future health and the health of his children.  But as my father has pointed out- what might he have done had he known- not had children?  That’s not an option that appeals to me, particularly.   So like all things in life, we will take the bad with the good and understand that some things are unknowable, some things are inevitable, and some things we fight with all the fight we can muster.  Thankfully, my ‘fight’ is not something I need to worry about having surgically removed.

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  1. Wow!!! Another incredible blog!! Thank you so much for continuing to make me laugh and cry over your poetic words about Cancer Cancer Cancer!!!

  2. You are amazing. I have to admit that if I were in your position I would hide as much as I could from my son. Sadly, I would be doing it more for me than for him. As much as I love Jake I wouldn’t be able to handle trying to explain what’s going on. You’re a better person than I, I can tell you that!
    Every time I read one of your posts I realize again how lucky I am to know you.

  3. Science is on Santiago’s side. A lot has changed in both the diagnosis and treatment of cancer AND MS in the last twenty-two years. More will change in the NEXT twenty-two as well.

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