Changes

Good Morning All:



For two years now (off-and-on) I have posted the progress and the setbacks of my ongoing treatment for Acute Lymphoblastic Lymphoma/Leukemia. I have interjected humor where I saw it and expressed worry as I felt it.

It is not lost on me that I have not posted recently and I'd like to share now why. One week ago the very tone and tenor of my treatment was changed. In a meeting with an attending physician regarding the delays in my receiving the treatments from the clinical trial in which I was enrolled, we received stunning news--I was no longer able to physically withstand active cancer treatments, that no further treatments were to be recommended, and that I ought to start focusing on quality of life--what remains of it. The cancer was still there and would ultimately "win."

It took Marla and I easily three full days to digest and to begin dealing with this information. How do we tell the kids? How do we tell others? Is this where one calls an organization like Hospice (and if so, why doesn't someone come out and say so).

After subsequent meetings with doctors and staff at Hopkins a plan is beginning to crystallize for dealing with the ongoing physical decline that I will assuredly have to endure.

I do not know the extent to which I will have the energy or desire to continue the blogs--I think we'll have to wait and see on that. I do monitor the responses to my posts and this one won't be any different.

A question we anticipate relates to visitors. There are many emotional and practical considerations with regard to the frequency, duration, and timing of any visits and so I know I speak for Marla when I ask for your indulgence as we sort through these very new issues.

Finally, I thank you for all your engagement, encouragement and laughs. I cannot ask for any better support network than the one I have had behind me all along.

As always, thanks for reading.

--Russ.

Oh, those red herrings . . .

Good Morning All:



I can remember times during my professional career where it all seemed so clear. I'd drive to work thinking over the 3 to 5 items I was working on and how I'd approach them. A calming sense of clarity on the bigger picture made the rest of the drive, getting into the office, turning on the PC a veritable walk in the clouds. And then . . .



A coworker leans in the doorway and informs you of a brewing fire. Your boss asks you to take on a new project--meeting's at 10:00. And there ends your chance of being "The Machine" that you envisioned while walking in the clouds.



Sorry for the delay since my last post. The administration off the actual drug occurs on Mondays. The second dose hasn't been as kind and again, omitting the gory details, has really taken a toll. So the team and I have chosen to skip the third dose. This will allow my strength to recover.

It is funny how at times doctors can fall prey to a red herring. A couple weeks ago during a routine platelet transfusions hives started breaking out on my arm, legs, and torso. They spent 3 days trying to figure out (pending the results of one outstanding biopsy) that it was related to the transfusion

The classic, and I laugh now as I type from home, was when I went into the hospital with a high fever. They kept me for 3 weeks trying to figure out what the source of the fevers were but also with the full knowledge that this disease caused fevers too. Curiously no full body scans were ever run to try an find a malingering infection. Hundreds of tests, cultures, a few CT scans all came back with zero. They threw up their hands, said, must be the disease, and released me.

I had a nice recompense of this earlier time just recently when I was admitted for dehydration. The resident on rounds asked me a question then opened the floor. I asked what I was here for and he replied "to find the source of your fevers." I told him that was not the likely answer. Sure enough the rounds team comes along, and the attending's plans were for the restoration of fluid and nutrients that might have been lost.

This has been my frustration from the beginning. There is little more I can say on this topic that hasn't appeared elsewhere on my blog--So I won't belabor it. I recall pictures of herds of buffalo being driven over cliffs by American Indians? My bet is that some of those buffalo decided to make a left turn and run for it. I bet they were fat content buffaloes.

As always thanks for reading.

--Russ