Cycle 1 - A Little Longer Than Expected

Yay!  I don’t have a brain tumor!

What a relief. The MRI results came back just moments before they wheeled me down for the intrathecal lumbar puncture chemotherapy treatment on Tuesday morning.  I barely had time to process this good news before being consented for the procedure in the Interventional Radiology unit.

I was not a big fan of the lumbar puncture treatment.

The central nervous system is a protected area of the body for a reason. The cerebral spinal fluid (CSF) surrounds the brain and spinal cord to provide a shock-absorbing buffer, so changing the volume of that fluid creates pressure changes at the core of your body. For this procedure, they took 7ccs of CSF fluid out and put 10ccs of methotrexate in. I was nervous going into the procedure, especially after the PICC line placement mishap last Thursday where they hit a nerve guiding my IV tubing in and I remember the unpleasant feeling of a spinal tap I’d had a few years ago as part of a clinical trial. That procedure left me with a feeling similar to what happens to your inner ear when you drive up in the mountains, but in the very center of my body instead.  I was not looking forward to it.

They told me that the needle being placed between my L4 and L5 vertebrae would not go deep enough to risk hitting the spinal cord but there was a small risk that they would hit a small floating angel hair pasta-like nerve and, YEP, they did.  Twang!! 💥😵

I had a lot of built up emotions going into the procedure and had just consumed another 100 mg of prednisone, so it shouldn’t have been surprising to me that I streamed tears throughout the entire procedure and cried for a good hour afterward.  It was a little surprising to the folks doing it, but they were kind and reassuring and gave me another box of Kleenex before sending me on my way.

My final treatment for this cycle has been far from smooth

They saved the administration of the Rituximab, a monoclonal antibody that attaches to a specific (CD20) antigen on the surface of my B-cell lymphocytes and flags it for destruction by the functioning immune system.  This drug is specifically helpful for the high-grade lymphoma that I have, but it’s a little tricky to administer because some people have reactions, so it needs to be closely monitored and its dose titrated over time. Of course, I was one of those people that had a reaction! I just can't seem to catch a break in that regard.  They started me at a low dose and came to check on me 30 minutes later.  My BP had plummeted again, I became extremely fatigued, and my throat was beginning to constrict.  They called the doctor and jumped into action.  They pumped me full of meds to address the reaction then tried again a couple of hours later with some preventative meds delivered ahead of time.  Unfortunately, this happened around the time of the evening shift change, so when my BP reading fell again, yet not quite as drastically, they decided to abort mission and save the next try until the morning when the attending was back on duty.

This morning, the doctor apologized and said that although this is a known reaction, it doesn’t happen very often and he was sorry it was happening to me and the poor lady three doors down. I'm in room 16 so I just we just refer to her as "13". It seems 13 and I are both here for our first cycle of the same treatment regimen and have both run into similar issues throughout our stay. I sent her a little note of encouragement through our nurse just now. 

The new plan is to restart the treatment later today with a very slow 12-hour drip time and a lot of prophylactic pre-meds to avoid a reaction. Of course, this will prolong my stay in the hospital one more night so I won't be sprung until tomorrow if all goes to plan.  Sigh. 

The kindness of strangers is so lovely and, in this case, somewhat amusing.

A young volunteer stopped by my room this morning and asked if I wanted a snack or a goodie bag.  Intrigued, I opted for the goodie bag and was highly amused when I pulled out the light reading material enclosed.

"Cowboy to the Max"  🤠😅

I am very ready to go home.