Dad will have his surgery tomorrow first thing in the morning. Think happy thoughts everyone!!!
Keith – no forward progress. He is still non responsive and his blood pressure is still low. His primary caregiver, Dr. Foy, paid a visit as well as his admitting doctor (who by the was my Dad’s admitting doctor). Both doctors started to review the charts, discuss his status, and pretty soon, Dr. Foy was on the phone with Dr. Smith and relaying information to me. Our conversation consisted of Dr. Smith debating transferring Keith to a tertiary hospital like UMMS or Johns Hopkins. There are pros and cons to this which I am actively discussing with Keith’s medical team, as well as his social worker and a friend of his who is an Oncologist with 20 years of experience with blood cancers.
I have reached a point of total clarity. It came as I snuggled up to him in bed after visiting hours, which isn’t easy with all those tubes. It was just me and him and we talked – ok, I talked – and he didn’t interrupt me – not even once. Asshole (Still the world’s most lovable asshole, mind you). We (I) discussed what Dr. Foy told me. We (I) reminisced about our first date. We (I) went over all the medical advice and possibilities and whether it was worth the risk and then finally I told him I had to go home and get work done. After untangling myself from the sheets and tubes and pillows, I found myself strolling down the hall, with my fingertips gliding along the rails on the walls thinking that as long as I stayed connected to them, I could send a signal down the wire to Keith. At 10:00 at night, the hospital is a very still quiet dark place. You have to leave through the emergency exit and the security officer greeted me as I walked up to the doors. He called me back in and handed me a few tissues and asked if I was ok. I hadn’t realized I was crying.
Here is the clarity in the form of an email I just sent to a couple of Oncologists for advice:
Good Evening Gentlemen:
I’m Keith Nielsen’s wife and I know both of you are aware of his lymphoma. In true Keith fashion he has the doctors scratching their heads and the clock is ticking. It is my understanding this is an unusual case. I’ve attached the report I provided the hospital the night I checked him in and an MRI report I received two days ago. Please keep in mind that his current condition is very different than what shows in the report from Dr. Smith’s office. His doctors are Dr. William Gai and Dr. David H. Smith. They are at Bay Hematology Oncology P. A. By copy of this email to them, I am letting them know that I am reaching out to you for more eyes on the case.
This is the situation as I see it as Keith’s wife:
Keith wants to fight this cancer and has been fighting it full throttle from the start.
If Keith’s health declines, he does not want anything to do with quantity of life versus quality – no resuscitation or intubation.
Those are the instructions my husband has given me. I also know that despite his stubbornness, he would allow me a little flexibility between the two.
What can we do? Trust me, I’m realistic. I’m also planning a funeral as well.