Bump in the Road

So it's not always going to be smooth sailing. Things had been going unbelievably well through the first eight days that we all started hoping that it was going to be easy.


Yesterday, day nine, we got our first reality check. Clyde woke up around 2:00a with a raging headache. She got up and took a Vicodin for the pain and went back to bed. After laying there for 30 minutes with no relief from she the pain, she got up and took another. That put her to sleep, blissfully I assume. At about 5:00a she woke and needed to use the bathroom. She says she knew where the bathroom was and what she needed to do to get there but could not get her limbs to comply with the orders her brain was sending out. She woke up Tom, her huband, who helped her get up and get to and from the bathroom. Needless to say, loss of motor-control was very distressing.


Tom, being the amazing care-taker he is, called the medical team at the UW Hospital. At 5:30a you get an answering service who contacts the doctor on-call. When the doctor responded, Tom described the symptoms and was told to bring Clyde to the ER immediately.


Upon arriving at the hospital, Clyde was put through a battery of tests and exams including a CAT scan of her head. The scan showed a build up of fluid that was causing pressure inside her head and resulting in the lack of coordination. A CAT scan didn't show the detail necessary to reveal all the required information so an MRI of her head was ordered. Results of that suggested a diagnosis of Posterior Reversible Encephalopathy Syndrome.


As the name suggests, PRES is a build-up of fluid in the back of her cranial cavity. The key word in all this is "Reversible". The condition sometimes presents as a "rare but serious" side-effect of a drug she takes for immunosupression called Tacrolimus. This drug, branded Prograf, may not be entirely to blame for her condition. Doctors tell us that PRES can be caused by high blood pressure, low platelettes, low magnesium, low potassium or recent doses of Rituxin. Interestingly, Clyde had ALL of those symptoms as well. In that some of those are side-effects of Tacrolimus, she has been taken off that drug in favor of Mychophenlate, marketed as Cellcept. The medical team is confident that Cellcept will work as well as Tacrolimus without the same risks.

I spoke to Clyde this morning and she is feeling much better. She has a good appetite and has been getting out of bed to move around her hospital room. She reports some residual disconnect with her left foot but the doctors assure her that it is temporary. The location of the fluid build-up also lends itself to the idea that her left side will be the last to recover. She'll spend one more night in the hospital but should home in time to watch the Badgers kick some Hawkeye ass.

A word about Tom, Clyde's husband. That guy has been a rock star through this entire process. They celebrated there 16th anniversary yesterday. Given the circumstances of the day, I guess "celebrated" my be a bit of an overstatement. Clyde had been diagnosed five years before their wedding so they both have been living with her cancer for their entire relationship. He has been there for her at every turn. That cannot be easy for him. We don't envision marriges that include all the trials that go along with living with cancer. "In sickness or in health" has been his way of life since day one. We're very thankful for everything he has done for Clyde and often refer to his strength when things are up in the air. There is nothing we will ever be able to do for him that will reward him for all he has meant to Clyde and the rest of us. Thank you Tom.

So, the road to Clyde's recovery will not always be smooth. We have proof. Thankfully, this scare is a temporary one with no lasting effects. Let's hope they all work out this way.

Be well.