I feel like I have been in a perpetual haze since I started chemo; I am never fully conscious.  It’s oddly unpleasant, but certainly not earth-shattering.  Time seems to progress in fits and starts for me, rather than in its formerly orderly, linear fashion.  I apologize for not updating this blog more often.  I simply have to wait for the haze to clear enough so that my thoughts can even form.

I saw Dr. L. again on October 13th, and it was an interesting appointment.  It turns out that my particular brand of lymphoma is very strange indeed.  Dr. L. had been speaking with a hematologist and a pathologist, both at Harvard.  They discussed my case at an International Hematology Society conference, and “no one knew what to do with it”.

It seems that morphologically, it looks like diffuse large B-cell lymphoma (DLBCL).  However, a Ki-67 proliferative index of greater than 95% points to Burkitt’s lymphoma (BL).  To complicate matters further, in 46.5% of the 200 nuclei studied, there was a myc trisomy, meaning there were three copies of the myc gene.  The weird thing is that in Burkitt’s, there is almost always a translocation of one kind or another on the myc gene.  I don’t have that translocation, but the trisomy 8 is very unusual, and again, points to BL.

The question was, do we treat this thing with the DLBCL protocol, or do we go to the Burkitt’s treatment?  The Burkitt’s treatment requires a 3 month hospitalization with multiple rounds of i.v. and intrathecal (directly into the spinal fluid) chemotherapy.  It sounds absolutely horrifying to me.  Ultimately, Dr. L. decided that the most important factor is the way my particular lymphoma is acting clinically.  It is absolutely not acting like Burkitt’s, so she decided to go with the DLBCL treatment — the one I had already started.  I am, naturally, thrilled with that decision.  Of course, there is still some uncertainty about whether we’re doing the right treatment, but we can’t know for sure.  Dr. L. is brilliant, and I would assume the other specialists she has spoken to are brilliant in their own right.  I believe we are doing the right thing, under the circumstances.  Only time will tell.  At least I have an interesting academic puzzle to ponder while I go through all this.  God knew that if I had to get cancer, I needed it to be interesting.

Also on October 13th, I had a picc (percutaneously inserted central catheter) line installed.  I’m very happy about this because it means that the nurses will have easy access to a vein even if I’m dehydrated.  No more bruising all over my hands and arms.  Yay!

The very next day, I started cycle 2 of my chemo.  Dr. L. put more precautions in place, and things went much, much better than the first time.  First, Dawn, my incredibly skilled chemo nurse, gave me the Rituximab very slowly.  That meant I had only a very small reaction, easily controlled with ventolin.  Then, Dr. L. had left orders for an additional i.v. antiemetic to be given just before I left the chemo unit.  (I was still there for almost 8 hours, but that’s okay.  It’s better than the alternative.)  Dr. L. also prescribed another oral antiemetic for me to take at home.  Additionally, she ordered a visiting nurse to assess me later in the evening, and she set things up for me to return to the chemo unit the next morning for more i.v. antiemetics and hydration.  This worked incredibly much better, and I am more than grateful.

All in all, things are going okay.  I still have fairly regular, unforeseen bumps in the road, but I am confident that when I see Dr. L. again, she will be able to prevent some of them from happening again.  The whole process involves a lot of problem-solving.  Fortunately, I have friends who give me good advice and a doctor with an excellent mind.  I don’t know what the future will hold, but I am confident that it will be interesting.  Thank you, dear friends, for holding my hand along the way.