Archive for February, 2012|Monthly archive page

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.

Okay- now I’m REALLY pissed.

In Uncategorized on February 13, 2012 at 5:05 pm

First- updates on weight loss and workouts.  I am managing 5 workouts a week and I am down 10lbs.  Although this week has challenged my food resolve as the BRCA gene makes a new appearance.

Thus far in my effort to reach out and muddle through all of this BRCA information and the subsequent processes, I have failed to mention the origins of my BRCA1 and BRCA2 genes and how they have effected my dad- lovingly titled the BRCA king by me- although his super hero name is Cancer Man.  His father- my paternal grandfather, died quite young from pancreatic cancer.  His mom, my paternal grandmother, died from ovarian cancer.  They are both BRCA indicated cancers, for those who haven’t been taking notes, that means they are both on the list of cancers caused by the gene mutations carried by me, my sister and my dad.  The widely held belief that the BRCA gene only indicates a genetic disposition for breast or ovarian cancer is in fact too narrow a view of these insidious little mutated fuckers.  So if we go back to 7th or 8th grade biology, we all recall the gene matching, dominant, recessive, blah, blah, blah.  Well clearly, these are dominant, because my dad has been juggling this gene since his first cancer diagnosis- prostrate cancer- in the early nineties.  Since that time he has had colon cancer with a pre-cancerous recurrence, bladder cancer which by its very nature recurs, and as of last Thursday, a new addition of ureter cancer, most likely a stray group of cells thrown from the bladder, but he’s undergoing tests and will have another surgery to have the cancer taken out.  My dad put it best when he said that upon hearing the news he was disappointed but not surprised.

So this is where we stand.  The knowledge of these mutated genes causes us to be surprised when there is a benign result.  What shocked me about this most recent wave of news on the cancer front was this:  I am in a barely containable rage.  I have managed each blow dealt thus far with relative grace.  Although anxious at times, and worried when my sister heads in for her chemo rounds (which, p.s., last one is this coming Thursday- yay for that) I have approached my own challenges by doing everything humanly possible to get stronger, thinner, more focused.  My work, child rearing, workout, and health care regiment leave little time for self-pity, but I managed to find time for it yesterday- on a mad fluctuation between bone crushing depression and head splitting rage.  And there’s no where to put it.  My ex-husband is concerned, he says he has rarely heard me sound despondent and maybe I should speak to a professional but blogging is way cheaper and I always get to be right.  Truth is, I am angry because my dad has to have another surgery, because as my sister says we will most likely all have to face an onslaught of cancers in the coming years, and no matter how much precaution is taken or how diligent we remain, our genetic makeup is such that our bodies will incline toward the big C.

Now, when I am calmer, or speaking to my sister regarding these matters, I take a different position.  I have known for 7 years that I have Multiple Sclerosis, but I don’t harp on the fact that there may be a wheelchair in my future, or that my optic nerve could crap out and cause blindness, or even that my vertigo could increase to a point of making it impossible for me to work, drive, even stand.  I NEVER worry about these things- upon my life I swear this is true.  They are not inevitable outcomes in my view.  Are the chances higher for me than for others that these things may come to pass- yes.  But if you think I’m going to waste the time I have for walking, seeing, living without the dizzy’s- on worrying about what may be down the road- then you are as crazy as I am genetically mutated.

So I realized that my anger, my truly blinding rage that has seeped in, is not about our inevitable outcomes- my dad’s, my sister’s or my own, but rather it is about watching those I love struggle under the weight of medical tests, surgeries, treatments and recurrences that make our lives harder than they would be were these genes not dominant in the Levinson line.  I am far more comfortable inside of my own illness than I am as the outsider watching the people I love muddle through their own version of the story I’m telling you here.

It must be said that BRCA1&2 genes are not the only genes I share with my pop, King BRCA.    The very fact that I can write this and share it with you is the most dominant gene he passed to me.   And as I round out the last paragraph, I am less angry than when I began because my ability to process through writing it down is saving my sanity these days.  I am not in denial, nor am I Pollyanna- I am simply trying to make a bad situation better by keeping my loved ones laughing and reminding myself that at least I have my health…oh shit…