Monthly Archives: September 2016

How it all started…

I am not a medical professional by trade.  In fact, my entire career has been in software support, development, Information Technology and Document/Content Management.

Soon after marrying my wife, we learned that she had a thyroid disorder called Grave’s Disease named for Robert Graves who described the condition in 1835.  This required my wife to have her thyroid irradiated to destroy it using a radioactive iodine (iodine is used by the Thyroid gland to produce the thyroid hormone(s)).  Since the iodine is taken up by the thyroid gland, it kills it before the radiation has a chance to dissipate, destroying the gland.

Having Grave’s Disease and, since she no longer had a thyroid, constant thyroid hormone level issues we were unable to conceive or if she did conceive it was very unlikely that she could carry to term.  Because of this, we took steps to prevent what could only end in heartache by me getting a vasectomy.  Honestly, this wasn’t a huge sacrifice as we agreed that in our current financial situation as a young couple we could not afford to have a growing family and her health was of significant importance to me (both then and throughout her life.)

For 20+ years, we both enjoyed relatively good health.  Gaining weight, losing weight, diabetes for me, high blood pressure (as a result of the Grave’s Disease) for her; however, nothing that was unmanageable or eminently life threatening.  Sure, we both learned new medical terms and means of caring for our typical nor quite common conditions.

My wife always had in the back of her mind that there was likely to be something quite a bit more serious, just around the corner.  After graduating from college, she had to move back home to care for her grandmother who was dying of ovarian cancer.  She had already lost another relative to pancreatic cancer.  Her parents were relatively healthy, after a fashion but passed from this Earth a few years before.  Her mother had, when she was younger, a portion of her stomach and small intestine removed due to ulcers (which today might not have been the remedy at all) and unknown to any of us, because she hid it so well, she had severe emphysema and heart issues likely caused by her years of smoking before her stomach issues.  She died from complications of a broken hip, emphysema and her heart issues. Her father, who had a rare form of Parkinson’s Disease soon had to live with a tracheotomy, catheter and a feeding tube.  He had severe cataracts which he had been fighting with for years and with the tracheotomy difficulty communicating; however, her brother took care of him night and day until his eventual passing peacefully at home.  So, with so much cancer and other issues my wife had plenty of reason to be concerned.

In September of 2014, my wife went to a gynecologist who was recommended by our General Practitioner since her previous doctor had decided to focus on the obstetrics side of the business.  The doctor found nothing of any serious concern.  My wife had raised the concern about her grandmother’s ovarian cancer and asked if she could be tested.  The doctor insisted that it was a very rare cancer and that the test involved (a CA-125 blood test…more about this later) was unreliable.

In October of 2014, my wife and I went on a vacation.  During this vacation, she began to have digestive difficulties.  We both attributed it to the rich food or possibly even a wheat insensitivity.

Upon returning, by Thanksgiving, she had been through a series of good and bad days. Shortly after Thanksgiving, she began to throw up.  She thought it was nothing, but, I insisted on taking her to the local ER that had just opened up.  They checked her out, did a CT scan, an ultrasound (checking the pancreas), and didn’t find anything of concern and sent her home with some pain medication and medication to alleviate the vomiting saying that it was likely to be a stomach virus that just isn’t showing the other common side effects yet (fever, chills, diarrhea, etc…)  She improved for a time.

Shortly after Christmas, she woke me up in agony.  This time she asked me to take her to the ER, which for her means that it is really bad.  They did more tests, another CT scan, another ultrasound, etc…  They told us that they were going to call an ambulance to transfer her to a hospital for observation and due to the amount of pain medication that they had to administer.  It wasn’t until quite some time later that we learned that this was not the entire truth.  Upon admittance to the hospital, the gastroenterologist that was on call visited her, had some X-rays done and said that there was just some hardened stool in the small intestines.  They would give her magnesium citrate to swallow and that would soften and move it through her system.  She would go home the following day but she was required to see him for a followup endoscopy and colonoscopy to see if there were any other contributing factors.

We did as we were instructed.  I took her for the endoscopy and colonoscopy and when she came out the doctor told me that he hadn’t found anything of any concern.  A small polyp and a couple of small gastric lesions on the stomach (ulcers), but nothing serious.  We were both relieved.

A few weeks later, my wife was feeling horrible.  We demanded to see the gastroenterologist again and he looked at the images and his report (never even looked at my wife or touched her) and told her to take over the counter medication to reduce acid buildup and sent us home.

A couple of weeks later, my wife was worse and her belly was quite swollen.  We again demanded to see the gastroenterologist.  He again never looked at my wife nor touched her.  He said that he never looked into the small intestines (where the blockage was), which rather infuriated me.  He said he would order a pill endoscopy.  A pill sized camera would be swallowed which would take photos all the way through her system.  That would show him if there is anything in the area of the small intestines which a scope cannot reach.  We signed the papers for the orders and went home to wait.  A couple of weeks later, no reply.  I called and was told that insurance had denied it due to lack of explanation or justification.  I was told the doctor would appeal.  Two weeks later, I called again and they said he had yet to appeal.  I then demanded that all of her records be provided and we would see someone else.  I picked the up and we were able to get an appointment the same day with a different doctor.

This new gastroenterologist reviewed all of her records and kept asking for ‘the rest’.  We told him that this was all there was.  He asked where the lab reports were for the ascites?  We both asked him what he was talking about.  He told us that the ER had identified ascites (fluid buildup in the abdomen) which is one of the reasons they transferred us to the hospital.  We told him there wasn’t any labs done on it.  Finally, after almost 2 hours, he came over to my wife and examined her.  He finally said that she was, “VERY ill”.  He wanted us to go to the adjoining hospital to get a new CT scan and for us to wait no matter how long it takes for the results and he would call us.  At 11:30pm, he called and said that it was what he thought and that we needed to go to the ER and she would be checked into the hospital.  He would be by in the morning to explain what was going on.

We went to the ER and they saw us immediately.  Her vitals were taken, blood drawn, etc…  An ER doctor comes in and breaks the news to us.  Ovarian cancer.  We were obviously devastated. The doctor and the nurses left the room for us to come to grips and then returned and moved her to a room.  I stayed with her and we cried all night.

That was the beginning of the journey….