Thursday, October 3, 2019

More on the First Infusion

Two Steps

Yesterday I completed my first session of Chemo.   I went home and took my Prednisone (which is the P in R-chop).  Today I went in for a booster shot to build my white blood cell count - part of what the therapy tries to do is to break down and rebuild your white count.  So the shot today is precautionary - they don't want that count to get to dangerous levels.  The more I see this process it is fitted to the patient but not exact - so they are constantly measuring and adjusting to see what works.

I gained a little weight (that was from the Prednisone and all the fluids I took in) - last night as a result of all that I slept better than I had for a month or so.  When I walked Indy this morning I felt like a weight had been lifted from my chest.

Tonight, my lead doctor called in to see how things had gone.   The followup on my team is amazing - this afternoon I got a call from the lead nurse.

As I understand the cycle a couple of days after I finish the round of Prednisone - my energy levels will regress to where they were and then gradually build up again to when I have the second infusion on the 23rd.

Indiana has become my pace dog - when I feel crappy he finds lots more reasons to slow down and sniff for stuff or mark territory - when I feel stronger - he matches my pace.  He is the canine part of the team.


  1. Dogs check their human's energy nineteen times a minute and Indy knows you well. A perfect member of your pit crew.

  2. From Nick Chang - a neighbor in SMA - Hi Jon,

    I've been reading your blogs and following your tests, diagnosis and now chemotherapy with great interest. I tried to post my comments in the comment section of the blog but I was unsuccessful, so you're getting this email and adding more junk to your collection.

    Having had two cancers myself, prostate and bladder cancers, and having undergone two surgeries, radiation and chemo therapies, I fully understand what you are going through both physically and especially emotionally. A diagnosis of cancer can play with one's mind, often meeting with disbelief, anger, wanting to fight everything and everybody, acceptance and finally seeing the light behind every shadow. I know I was able to see things differently after a while, realizing that I don't have infinite time, therefore I don't need to deal with the negatives the rest of my life. I can just say "Fuck it," smile and walk away. What a liberating feeling!

    Hope you find your "Fuck it" and smile moment! Putting your thoughts and feelings in your blog is a important step in that direction.

  3. Read your blog.

    The comment about your (our) analytical nature made me chuckle.
    Your comment about the diversity of the crowd is spot on. During my career, I saw the spectrum of people. I always most enjoyed those patients who were analytical and asked questions. Noani always accuses me of giving to detailed answers to questions. Yet, especially in medicine, has detailed information that supports the currently held position. Unfortunately, Alex says their are a significant percentage of physicians who only get data (information) from drug reps. The fact that your “team” all are anxious to give you a good experience is a positive reflection of both you and your interest in your own well being and them.

    By the way, if you don’t know or have not seen the movie “The Doctor” with William Hurt. Well worth watching as it near perfectly reflects what you’re going through.

    From Brother Dan