State of the state – for today anyway.

Settle in, this is probably going to be long.

I have struggled on how much to share about this new thing.  Outwardly, I was very much like “hey, whatevs”, but inside I am heartbroken.  Here is why –

Since the beginning of July, I have been hospitalized twice because of “superficial” thrombosis (blood clot) in my left forearm.  This plays in more so a little later, but I wanted to explain this chronologically.

I was FINALLY able to get the genomic testing done.  Insurance was the hold up, and a whole host of people I know have issues with insurance and the hoops they erect.  I have had it pretty easy in terms of insurance, for the exception of the genomic testing (the specific information about what genes were evaluated can be found here).  Although annoyed, I jumped through the necessary hoops and finally got it done.

The results have returned, and in a very basic nutshell, the results for the BRCA 1 & 2 gene were inconclusive.  This is not uncommon, there are a million reasons for inconclusive results.  However, I do have a mutation in the PALB2 gene which literally stands for Partner and Locator for the BRCA2 gene.  The mutation has been classified as “variant of unknown significance” which means that they are unable to pin-point if this gene is what caused my breast cancer.  Believe it or not, only 5 to 10 percent of breast cancers are caused by hereditary genetic mutations.  In my case, I got breast cancer because that is just how it happens, my own genes mutated that way.  There are many groups that have many opinions on what causes breast cancer.  The more popular culprits tend to be the environment, obesity, lifestyle habits such as alcohol or smoking.  I believe that there is a history of cancer up and down both sides of my family, statistically one or more of us kids (I am the youngest of 6) would get cancer.  It’s not the fault of me, or my parents or my grandparents.  Every single one of us harbor cancer cells in our body, it’s all about how they choose to mutate and multiply.

So, I saw my oncologist September 12th.  Dr. Mendonca really didn’t have any good news.  First of all, going back to the blood clots, it seems that the series of “superficial” blood clots have now evolved into deep vein thrombosis, which is bad.  If I were to throw a clot, I could have a stroke, or it could travel to any one of my organs and cause major damage, even death.  Since the beginning of the blood clot ordeal, it has been the opinion of a team of oncologists that they were being caused by the hormone therapy (I called it my cancer drug) Tamoxifen.  Tamoxifen works by being antagonistic (suppressive) to estrogen.  My estrogen levels need to be suppressed because increased estrogen levels can help cells grow and divide too rapidly.  Your cells in your body grow and divide as many times as needed and then stop they then attach to other cells and stay in place in tissues. Cells become cancerous when they lose their ability to stop dividing, to attach to other cells, to stay where they belong, and to die at the proper time.  To make this long story even longer, it was decided that I would have to stop taking Tamoxifen that day.  It was obvious that it was too much of a risk to keep on taking it.  In place of Tamoxifen, I was put on Xarelto, a blood thinner, to decrease my chances of throwing a clot.  Of course, Xarelto is the newest oral anticoagulant, so it is at the top-tier of my pharmacy benefits.

Unfortunately, there is not another suppressive therapy I can take because I am pre-menopausal.  We then discussed options to bring on menopause.  Menopause happens 3 ways, naturally (I am 10 to 15 years from that), chemically induced, or a hysterectomy.  We haven’t made a concrete decision on the direction to take, but waiting 10 – 15 years isn’t an option.  Chemical induction isn’t ideal, because it will still take months to complete, which means more months without estrogen repression.  That leaves just one option.  Hysterectomy.

Jim and I have known for a couple of years now that baby number 2 was not in the cards for us.  There are a lot of little reasons, like the fact that kids squeeze every dime out of your bank account.  To the bigger reasons, I had a very debilitating case of PPD after I had Meagan, the last 2 months I was pregnant were spent trying not to deliver a VERY premature baby, and she was still a month early.  But if were to have gotten accidentally pregnant, we would have taken precautions with my health and would have happily made it work financially.

But, knowing now that NEVER having another little one is the hardest part.  Tell me I can’t do something and I just want it more.  I had envisioned Jim and I having 2 kids, but knowing now it will absolutely never happen makes me so sad.  Maegan has BEGGED me for a little sister or brother for the last two years.  Her reasons ranged from having someone to play with, to having someone she can teach “family things” to, to having someone who “understands her like a little brother or sister could”.

That’s the state of Jen, at the moment.

Love and light –

Jen

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2 thoughts on “State of the state – for today anyway.

  1. Oh Jen … I am at a loss for words. Really. I remember the one post you wrote about what NOT to say to a cancer SURVIVOR. Yes, I call you a survivor because that is what you are. So, in lieu of not being able to put anything into words that will make any difference whatsoever, would you like to have lunch with me one day? My treat.

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