Today Emily will begin a new clinical trial. We found out about a month ago that the “Trojan Horse” treatment, as we called it, was not producing the desired effect and it was time to move forward with another option. We were hopeful that Emily may get to enter a trial involving immunotherapy, but there are currently no open spots.
Not to fear though – there is no shortage of trials at MD Anderson. Emily’s new trial will involve taking three different medications. One is a pill and the other two are infusions, which means they will drip through an I.V. into her port (an access point implanted under the skin). As with every treatment option, we are cautiously optimistic.
I have to take a moment to tell you why my wife is stronger, braver and more incredible than all of us. With each new trial comes a litany of tortures Emily has to endure. You’ve all seen movies or known someone who has gone through some type of treatment, so you can imagine, in some part, what I am talking about. However, the difficulty of treatment goes beyond a few side effects. Cancer takes your life long before it takes your life. What I mean by that is undergoing clinical trials is like the decathlon of treatment.
Each trial comes with its own protocol that Emily must adhere to so that doctors and researchers can obtain accurate information pertaining to the treatment. Emily not only has to endure the treatment itself, but also multiple blood draws each week. This means getting to the clinic by 7 a.m. so that maybe you only have to wait an hour for your blood draw — blood draws through over-worked veins that require multiple attempts for a viable draw. That’s doctor speak for getting stabbed with a needle in the same spot ten times in a row.
She has to endure CT scans every six-eight weeks; giving up her Saturdays to sit in a waiting room for hours drinking contrasting fluids and waiting for her turn to lay motionless while rays are shot through her body.
She sees doctors several times a month, which means sitting in a waiting room for at least an hour. Then sitting in an exam room for another hour before seeing a nurse and explaining everything you have been experiencing in detail. Then waiting another 30-45 minutes before seeing the mid-level physician and explaining everything you have been experiencing in detail, again. Then waiting another 30-45 minutes before seeing the doctor and explaining everything you have been experiencing in detail, once again. We rarely have a doctor appointment that does not take a minimum of three hours.
Because of the possible side effects Emily may endure in these trials, she must undergo other random testing. Sometimes multiple EKGs in a single day. Sometimes random eye exams to ensure the harsh drugs aren’t degrading her vision. She is pressed and prodded and shifted and turned and poked. Most of the time, these things also take hours.
The cancer and the treatments rob Emily of her blood. She has had three transfusions in less than a year.
Since starting clinical trials, during the course of a typical treatment week (which is every week during the trial), Emily will lose a full day of her week. A minimum of 24 hours will be taken from her. Along with a lot of blood, money and dignity. But Emily doesn’t complain. Sure, she recognizes the ridiculousness of it all, but she doesn’t complain. She doesn’t use it as an excuse either.
Emily has never stopped working full-time during her many treatments. While in waiting rooms and hospital beds, Emily is on her laptop, working fervently so that the children at Avondale House have every resource those with autism need. She stays in contact with friends. She makes plans and nurtures relationships. She still works out. If she has the strength, she goes to the gym with me and she works. She doesn’t doddle on the elliptical. She moves steel. She weighs just over 100 lbs and she outworks most of the guys in there.
Since starting treatment, Emily has undertaken numerous DIY projects. She has painted rooms, refurbished furniture, created pottery, decorated our home and rescued four stray kittens.
This morning, before leaving the house to go to the clinic, Emily was in the kitchen putting stuff in the crockpot so that I will have dinner tonight. She left home to go to the clinic for yet another blood draw, then left the clinic to go to work for half a day before going back to start treatment this afternoon.
In conclusion, Emily is a f*cking super hero. When you see her in life, you should do whatever respect means to you. When Emily walks by, you need to take a knee, bow your head, salute. You need to lay flowers at her feet and sing songs to her glory because she is Achilles incarnate. She is a warrior and the best person I know.
PS – Did I mention that she had heart surgery less than two weeks ago? (Drops mic)