Welcome to our CaringBridge website. We'd created it to keep friends and family updated about Bernadette. Alas, her condition has been stable since July 27, 2012, and there is nothing to update. So now it is a way to keep family and friends updated on my status, recovering what I can from the ashes. Get started by reading the introduction to our website, My Story.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
The story started on June 20th, 2011, when we got a diagnosis that Bernadette had "Metastatic carcinomatosis". Once considered a terminal diagnosis, we found there were new surgeries and post-surgical treatments that had survival rates measured in years.
Pittsburgh is fortunate to have one of the best cancer facilities in the country. Her surgeons are considered to be among the best-of-the-best. Several of my other doctors, when they asked who her surgeon was, nodded their heads when I gave the names of her two principal surgeons, and commented on their excellence.
So when someone asks "Did you get a second opinion?" I usually reply with "OK, who would I see for a second opinion? Oh, yes, I'd find one of the premier cancer facilities in the country, find their best surgeon--preferrably one trained by the surgeon who pioneered the surgery that makes this a non-terminal diagnosis--and see what that person says. Oh, wait a minute! I already did that!"
The surgery itself was seven hours, but they removed all the cancer they could find. It was definitely ovarian cancer. Then recovery, and more surgery to install "ports", special IV connections so they don't have to set an IV line each time. Her surgeon could install only one of the two required ports.
Then the chemo started. It turns out she is allergic to the primary chemo drug, Taxol (actually, she was allergic to the suspension substance, Cremophore-EL, a castor-bean derivative), and ended up needing a far more powerful drug, Taxotere.
The worst part of this was a combination of side effects from the surgery and chemo sent her into septic shock while we were on holiday in New Jersey. She nearly died (strictly speaking, she did die, but in the operating room just as she was going in for surgery; and they got her heart restarted in less than a minute). She had a "transverse loop colostomy" performed.
She was in the ICU there for nearly three weeks until we could transport her back to Pittsburgh. The stay was complicated by her getting both a VRE (Vancomycin-Resistant Enterococcus) infection and a C. diff. (Clostridium difficile) infection, either of which could have been fatal in her immunocompromised state. For most of the month after the surgery she was unconscious, sedated.
The trip to the ER at Cape Regional Medical Center in New Jersey on 27-Sep-11 was the start of a nightmare that only ended with her death ten months later.
In Pittsburgh, she spent 34 days in ventilator rehab, complicated by such fun as a case of shingles.
On November 17th, with her trach tube finally removed, she moved down to the next step, a physical rehab facility. She spent a month undergoing several different physical and occupational therapy procedures; she was finally able to get out of bed into her wheelchair, and wheel herself into the bathroom. We measured life by such small and ordinary triumphs.
She finally came home on December 23rd. We did not celebrate Christmas on the 25th; we delayed it until Orthodox Christmas, in January.
She had, in early January, a PET scan which showed active tumor growth. Then she had trouble breathing, which resulted in another ten days in the hospital. They had to drain fluid from her lungs again; this time, 1200ml. Either the tumor or abdominal fluids were compressing her ureters (the tubes that lead from the kidneys to the bladder), which was leading to kidney damage. So the solution was to have tubes stuck directly into the kidneys, and drain directly to exterior bags. This is callled a "bilateral nephrostomy:.
In the never-ending adventure, she ended up with a staph infection of her port. This required removal of the port and installation of a Peripherally Inserted Central Catheter (PICC) line in her right arm.
Sadly, just short of a year from the initial diagnosis, on 12-Jun-2012, her doctors said that they had run out of options. The cancer proved to be "platin-resistant" after four carboplatin treatments. All other chemo drugs would be less effective and far more dangerous. There was nothing left except palliative care and hospice.
Bernadette died about 3pm on 27-Jul-12, at the Compassionate Care Center Canterbury hospice. I was holding her hand when she breathed her last.
You can read all of these details and more (including her obituary) in our Journal; if you are new to this adventure, you should ask that it be displayed oldest-to-newest; the normal display is newest-to-oldest. It is a much-too-long story, over 500 entries, so get comfortable.
And yes, it was too long for us, also. Or too short a time.
Nearly all of the Journal entries are written by me, Joseph M. Newcomer (aka "The Flounder") on behalf of Bernadette Callery (aka "The Little Gray Cat (
http://www.flounder.com/graycat.htm)")
