Wednesday, October 15, 2014

Doctor visit today

Thanks Howard for the summation.

Ade and I met with Dr. Alexander Drilon and Nurse Practioner Claire Moran from 10:30-11:40 today.

Here is a recap of what was discussed.  

Executive summary:  Cancer didn't grow.  Adrian resumes Cabo meds today..

Dr. Drilon reviewed the results of yesterday's catscan.
  • "Your labs look good to me.  The scan doesn't look any different."
  • "The cancer looks stable."
On Cabo resumption:
  • Begin today (Ade took one at 12:15 today)
  • Keep at same dose: 60 mg.  If he experiences any negative side effects, they will reduce to 40 mg.
  • Ade needs to report any new negative symptoms.
  • Begin keeping diary of daily usage.
  • Hand in old diary at next visit (October 29)
On the cause of gall bladder infection:
  • "The pill (Cabo) didn't cause the infection.  We can't say that it's impossible, but the likelihood is very low."
On Adrian's depression:
  • "We need to get your mood under control." (This was the first thing he said upon entering the room.)
  • "The mood more than anything needs to be worked on."
  • We collectively deferred against seeing head doc Dr. Key but they are making an appointment for Ade to see him the beginning of next week.  Ade agreed to the appointment.
Misc.
  • Next appointment: October 29 AFTER meeting with Dr. Simon (he's the one who hopefully will OK the removal of the drainage tube on the morning of October 29).
  • Ade should use the spirometer (sp?) 2-4 times a day to improve breathing.

Conversation with Nurse Moran (more extensive than discussion with Dr. Drilon):
  • Ade admitted he was "absolutely fatigued"
  • He said he head and back caused him pain yesterday.
  • He said he suffered a bit of vomiting....nothing major....and he controls with meds
  • He reported no mouth sores, numbness or tingling in limbs, or blistering on palms of hands or feet.
  • Weight: 146 pounds
  • Ade reported some shortness of breath
  • White blood count "looks goods"
KEY UPCOMING DATES
  • Week of Oct.: 20 Appointment with Dr. Key (they will alert us to exact day and time....if it's Monday or Tuesday, I can take Ade)
  • Morning of Oct. 29: Dr. Simon
  • Afternoon of Oct. 29: Dr. Drilon (they will alert us to exact time)

Sunday, October 12, 2014

What an ordeal!!!

I know you have all been calling and reaching out to me non-stop, and I wanted to thank you all for your love and support. Here's what has been going on:

I went on this great trial drug (an oral med) and 10 days later got a massive infection of my gall bladder. Just a coincidence. But the side effects of the new drug were pretty tough and then I got slammed by the infection. Because I have to do things the hard way, I didn't get the easy to treat infection that 90 percent of all people get. Nope, I got the one that only 10 percent get that has a high mortality rate!  MSK opened the OR for me on Sunday and inserted a drain which I will have for the next few weeks. Of course my heart rate went crazy from the infection and so I was moved to ICU for 6 days and then a telemetry floor for another 6 days. As that was resolving I got aspiration pneumonia from a coughing fit.

So now that's resolving and I am home in 6B in manhattan with the worlds best dog - the magical Luca.  Here's a picture of us having lunch today. I am extremely fatigued and trying to eat and walk a bit. Its not easy. Plus the emotional toll is pretty heavy! I have to go and see the trial doctor on Wednesday to resume the trial. Yikes. How many ways can I get my arse kicked. Sorry for my non responsiveness. It was all I could do to keep on keeping on. I'm trying to not have visitors right now so that I can recover fully and not be concerned with coming down with something else.

Thank you to my family for their endless love and support. Everyone should have an 85 year old mother like Bobba! 

Carpe Diem.