Getting back into life and starting treatment

Over the last few weeks I've seen a huge improvement physically and also in my outlook.  It's been amazing.  I went from having difficultly standing for a few minutes, to being able to get out into a more regular life again.  I'm walking about a mile a day (slowly, and not by myself yet), and working with a physical therapist to regain the muscle tone I lost.  And I've been eating up a storm to gain some weight back.  It's still a full time schedule of medical appointments, with 3 full days outpatient at the hospital plus lots of appointments and tests the other days. On the weekends we've been making it a point to take a vacation from all of this.

It seems we can't stay away from Covo

On the way home - we find ourselves on the Garython route again!

So where are things medically?  We've gone from a sense of confusion and despair just a few weeks ago to now having a plan that we are very hopeful about.  I'll be starting treatment this week.

Just to refresh: my blood counts have been suppressed and I've been relying on transfusions for a few months now, though less frequently as time passes.  The other serious problem is that my lymph nodes growing in my chest were pressing against my airways, making breathing very difficult.  That is being controlled with steroids, a temporary solution at best.  The standard treatments for the disease have been exhausted, and some promising study drugs are still not available to me.

Largely on Brian's initiative we've reached out for more opinions, from new doctors and some we've known. I had a bone marrow biopsy and it shows that my bone marrow is filled with disease, which explains why my counts have been suppressed (as opposed to from damage from radiation).  The biopsy shows CLL and also "large cells", which some of the doctors interpret as Richter's Transformation, a form of lymphoma known as DLBCL.  Treatment is needed to clear the disease, and also to address the lymph nodes in my chest.

We were presented with two completely different treatment options, one from Dr. Lamanna, my long-standing oncologist, and one from Dr. Owen O'Connor, who heads the Lymphoma service at NYP-Columbia (CLL can be classified as both a leukemia and a lymphoma).  There is not a lot of data at this stage, and we are left to individual doctors' judgements based on their experience. For a lay person it's nearly impossible to know what to do. With a stroke of amazing luck, Dr. Rai, a revered figure in CLL treatment, was available on very short notice for an appointment (we dashed out to LIJ in a taxi on ten minutes notice!).  He knows my case well, since I was on a trial with his group a few years back.  He made the decision for us, favoring the treatment Dr. O'Connor is proposing.  This is a huge relief for us.  Both he and Dr. O'Connor are hopeful that this will work, and that it could put me on the road to transplant or to management as a chronic disease, while we await new drugs coming out in the future.

This Tuesday I start treatment: a pill every day plus IV infusion every 2 weeks.  I'm excited to get going on this, though with the usual worries about the complications of treatment.  It will also take some adjustment, after all these years with Dr. Lamanna, to having a new group of doctors managing my overall care.

What have we been doing for fun?  A post from Brian coming soon ...