It's been 4 years

Warning: This initial blog contains a lot of medical jargon, but it's necessary to wade through it in order to understand my story.  So if you're diving into my blog for the first time, continue to take the plunge and I promise, you will come up from this "medical-ese" deep end shortly.

In 2007 my status as Lady in Waiting began.  After a miscarriage in July of that year and 2 subsequent positive pregnancy tests in October and December - neither of which resulted in a viable pregnancy - I was sent to my first specialist.  The gynecologic oncologist diagnosed me, at the time, with a case of Phantom HCG (human chorionic growth hormone).  It was thought that something in my blood was reacting with an agent in the pregnancy test serum to produce a false positive, thus indicating I was pregnant, when I, in fact, was not.  I was told that eventually this would just work its way out of my system and that I was free to have more babies (I already had 2 healthy sons).
In November of 2008, at my annual exam, I tested positive for pregnancy once again.  My ob/gyn and I both questioned whether I was really pregnant or if this was just the Phantom HCG acting up.  So, she tested my blood and sent me for a follow-up blood/urine test 48 hours later.  It turned out that the blood and urine both tested positive - a sign that it was no longer phantom hcg, but with my hormone levels not increasing at all in the 48 hours, we suspected this was not a pregnancy either.  All signs pointed to the more serious possibility of GTD (gestational trophoblastic disease).  GTD, as I have come to learn, takes place when gestational trophoblast cells, leftover from a pregnancy, remain in the body after childbirth, miscarriage or abortion.

So, back I went to the oncologist.  After a D&C, which resulted in the removal of a placental nodule - benign - it was determined that I had a very rare form of GTD.  So, low dose, single drug chemo began.  2 rounds of intra-muscular methotrexate and when that didn't work, 1 round of actinomycin-d.  After each round my HCG levels went up instead of down.  So, the specialist called a few more specialists.  After more tests, (have I mentioned yet that by now I was really tired of tests?  If only I knew this was just the tip of the testing iceberg.) I was advised to have a hysterectomy and then multi-agent chemo.

Are you still with me?  Because I'm tired of typing so you must be tired of reading.  Should we take a break and come back to this tomorrow?  I don't think I'll want to revisit all of this so I'm going to continue with my back-story vomit and you can decide whether or not you need a break.

Anyway, amazingly enough, my hysterectomy surgery was cancelled as I lay on the gurney ready to be wheeled into the O.R.  Interest piqued?  That's a whole lot of story to tell, and I still have a lot more story to go, so if you want details you'll have to wait for my book or the movie to be made based on my book, I'm hoping they'll go for a young Sandra Bullock type to play me.  Oh, I know, maybe Anne Hathaway.  I digress.

After my cancelled surgery the specialists conferred again and decided the best course of action was...to wait.  From May 2009 to December 2010 I went for regular blood tests and waited for my HCG levels to either go down to 0 or up to 1000.  The level hovered around 52 for a year, then began it's slow and steady climb.  In December of 2010, after one night of some of the most excruciating pain I've ever experienced and what I initially thought might be a miscarriage, I decided I needed a doctor to take a second look at my case.  I picked one of the conferring specialists, after my oncologist's rather dismissive response, and under his advisement, had a hysterectomy. I knew there was a possibility that the disease can move outside of the uterus, so I asked about the necessity of removing my uterus.   I was told there was a 90% chance that the surgery would take care of the problem.  90% sounded pretty good, but I had a feeling I was a 10% kind of girl.  Turns out I was right.

So, now I'm the medical freak that tests positive for pregnancy without a uterus.  I'm still awaiting my call from PT Barnum (and yes I realize he's dead but I figure he's got family that would still be interested in the eternally pregnant woman).  At the very lease someone should notify STAR magazine or The Enquirer.

March of 2011 marked the newest phase of waiting.  I'm now a patient at Memorial Sloan Kettering Cancer Care Center.  The GTD specialist told me my case is unique - I'm thinking that says a lot.  I've undergone a full battery of tests and scans - MRI, CT, & PET (my least favorite was the PET; being radioactive for the day does not rank high on my list of things to do).  The scans showed some "spots" of interest as well as a pituitary tumor - all of which are presently benign.  At my May appointment my doc said the "magic" number for my HCG levels is 500 and then I'll need to start aggressive chemo for 3 months.  Now, like many people who have heard my story you might be wondering why I would need to undergo chemo if I don't currently have cancer.  Good question.  I've asked it too.  Turns out GTD, when left untreated, will turn malignant and when it does it gets ugly quick.  So, that "magic" number is the best time to attack, before it gets out of hand.

At the first appointment in March my oncologist at Sloan told me that some patients actually feel relieved when it's time to start chemo.  I thought that was a rather ridiculous statement, but now I'm beginning to understand.  You just get tired of waiting.  It's been four years.  I've learned a lot about myself, about my body, about medicine, about my support system, and most importantly about God in this interminable waiting period.  With my HCG levels last registering 398 in mid-July and my next blood test a few days away, it would seem my time in the waiting room may be coming to an end, but while I'm here I thought it might be time to make a few notes on what to do while you're waiting.  Just in case you find yourself waiting anytime soon.

Congratulations if you made it through this post - you've earned your deep-end pin.