Friday, March 15, 2013

Mixed Results

No better way to start the day!

My late friend Steve (ugh, “late” sounds so formal and awkward). Try again: My very good friend, Steve, that died from complications from this f’in disease and that I miss tremendously every day, once told me that at some point, news just becomes news.

News is what I got yesterday after having my first PET Scan to assess the effectiveness of this Bendamustine/Brentuximab Vedotin clinical trial. It’s not necessarily really good. It’s not necessarily really bad. It’s just news that I now have to deal with. This news directly affects my life, so I kind of have to pay attention, as little as I want to pick up and recalculate.

I am coming off of this trial. It is not working for me. Another treatment that just couldn’t get the job done. It’s getting frustrating and exhausting for sure. I desperately miss stability.

Wednesday was a long, long day. My mom started at 5 a.m., driving to pick me up at 6:45 a.m. to start the trek into the city. That’s a devoted mama. I had to have my scan at the hospital way uptown in the Bronx. It’s very old hat, but it’s still not fun. I had to get both a PET and a CT Scan to be able to best analyze both my bones and my lymph nodes, respectively. That means I had to lay in two machines, drink a full bottle of “banana smoothie”-flavored barium sulfate, be injected with the PET Scan radioactive diodes, and then be injected with contrast for the CT Scan, which goes in while you’re in the machine and makes your whole body so hot that you feel as if you’ve wet your pants. This is all after not eating since a midnight snack the night before.

We then had to travel to midtown Manhattan where my doctor’s clinic is and we would go over the results and formulate a plan. Waiting for those types of appointments to start, especially, is hell. Waiting for 2.5 hours is even hotter hell.

I fell asleep in the waiting room, so deep asleep that I let out a fart and then started laughing. All those contrast chemicals make me gassy! My mom rolled her eyes and tried to cover it up and not start laughing hysterically herself. No doubt the other people in the room heard. I was too tired to care. Then, we both fell asleep intermittently in the exam room where we waited more. It was so hot in there and the walls began closing in after a while. We played some word games on our phones. I took walks to the bathroom to make sure to make my presence known.

After two hours we were punch drunk with exhaustion and anxiety about what news the doc would bring in. It just got silly and at my mom’s request I started doing interpretive dances to express how I felt at that moment. They mostly consisted of lyrical hand motions that utilized the middle finger and classic movements to denote “f you’s” like the hand sweeping from the base of the neck out at the chin level or falling to my knees, arms making a circular wave until they rested right forearm under left forearm parallel to the floor, right hand making a fist at the world. Classic swearing-through-hand-motions.

Finally, we saw the doctor and his team after they reviewed my scan with the radiologist. The results are “mixed.” Dr. O is as frustrated as we are in that he wants so badly for something to work for me for more than two seconds in a seriously effective way. The disease in the bony areas has either resolved or reduced everywhere, including my pelvis, which was pretty jam-packed. However, there is new growth in the lymph nodes of my left neck/collar bone area.

I am not surprised by this. I have been pointing out swollen, palpable nodes in that area for six weeks now. They popped up just after having my first infusion of this. We were hopeful, however, that it was instead cell death causing fluid build-up and inflammation. I knew otherwise. I’ve palpated my lymph nodes for a long time now. Now it is confirmed by the way it was showing on the scan that it is in fact disease.

It is curious that disease would grow like that in one area even though I was receiving two drugs very well studied to work against HL, as proven by how they worked against the bone disease. We’re tossing around the idea that maybe the disease has morphed into another type of lymphoma and I could be dealing with something completely different than HL in this lymph node area. Dr. O doesn’t think it’s likely, but does think that it’s plausible. He’s seen it before.

I’m contemplating having the area biopsied so that we can know for certain what we’re dealing with. I need to weigh the risks of that with the benefits and realize that it’ll delay my treatment some as well. My gut right now is telling me we should check it out, especially since these lymph nodes are so easily accessible. I have not had a biopsy to look closely at the disease tissue since November of 2011 when I relapsed after my allo transplant. I have some more thinking and opinion gathering to do surrounding this option. If I am dealing with a different type of lymphoma, that will open up a whole new door of treatment options to better target it. If it is still HL, then at least we’ll know that we’re focused on the right treatments.

Regardless, my number one task is to try again to wean off of the Prednisone completely. If my body can do that, then it opens back up the trial of the NAE inhibitor being hosted at Columbia, which seems like a next best option for me. I was about to start it before this trial, but participants are not allowed to be on any steroid while enrolled. When I tried to come off, shit went crazy. We’re hoping that with less disease in my bones, I’ll have less pain without the steroid. I drop by half today.

There are a couple of other clinical trial options at Columbia as well. Traditional chemotherapy is off the table for me. My bone marrow is too sensitive, as proven by how anemic I got and how low my platelets dropped on this trial, which is only one-part, very low-dose chemo. The short-term gains are not worth the side effects for me at this point. Plus, the well is fairly dry. I’ve tried most all chemo drugs traditionally used against Hodgkin’s, except some very harsh regimens that we’ll save for emergencies only.

I’ll delve into more research this weekend to see what else is happening out there in the lymphoma world and need to make some decisions by early next week. I’m gearing up – again – for another new chapter and everything that that brings. I’d rather just sleep. 


  1. Once again....... we watch and listen with sheer amazement at your strength and resolve. A warrior for sure... poised and ready to beat the enemy!!! You are simply, the BEST!!!!!

  2. you should try the mocha flavored barium. if you are hungry enough, you can trick yourself into believing it coffee and chocolate milkshake.

    my thoughts are with you and hoping for the best.


  3. Sigh..Just reading about it is horribly frustrating and distressing.I can't begin to imagine what goes on through your mind moment by moment. With all this nonsense, you're entitled to more waiting room farts!