MCL - Treatment 1 Update

MCL - Treatment 1 Update
Cancer Bat T-shirts I designed for myself. Because Lymphoma turned me into a Vampire.

(Originally published February 15, 2022)

Each of the three Rituximab/Bendamustine treatments will be spread out over 2 days. Treatment 1 happened February 10 and 11.

Day 1 is the long day - 8+ hours in the oncologists’ office sitting in a comfy chair as the oncologist and his staff manipulate bags of IV drugs. Day 2 is the short day – 90 minutes getting the rest of the Bendamustine.

The start of day 1 is preparatory drugs - mostly stronger versions of drugs we can purchase over the counter - Benadryl, Pepcid, an anti-nausea med, that sort of thing.

After 30 minutes to let the preparatory drugs start working, the doctor started the Bendamustine drip.

I did OK with the Bendamustine. No drama.

Then, the Rituximab.

I don’t know why I thought the Rituximab was going to be the “easier” of the two.  Instead, the oncologist and I needed to slow the drip down dramatically for the first part of the bag.  We knew things weren’t right when I started uncontrollably shivering (though I strangely didn’t feel “cold.”). When we backed off, the shivering eventually stopped.  I sense that this was my body working to get used to what needed to happen here. I am so grateful that my body decided to give me a clear indication of when things are going too fast.

The idea behind the treatments over the next 6+ months is to get my body back to a higher proportion of normal cells in my blood stream and bone marrow.  To do that, we focus on killing off the abnormal cells + figure out how to support the healthy cells.  Hence, all the blood tests.  The body does not necessarily signal that something is wrong in a way that people like me pay attention. My long habit of over-riding and under-emphasizing anything under screaming agony makes patient-reported signaling even more unreliable.

After a few hours, we were finally able to get my body to accept the Rituximab at a pace where we all had a chance to go home for the evening.   My hope is that future encounters with this drug aren’t nearly so eventful.


I felt pretty good the next day and drove myself into the office.

Day 2 was a basic IV drip. Go in, get vitals done, another IV in another vein, drip in the drug, read a book. Afterwards, I took the opportunity to run some errands.

This may not have been the wisest move on my part – but I had been warned that the next 5 days were critical and that I was probably going to feel lousy. Might as well take advantage of the energy. Especially since I am staring at an extended period of “house arrest” outside of appointments, treatments, and procedures.

Saturday’s blood draw brought up a potential issue with my Potassium levels that almost sent me back to the ER.  I felt OK, tired, but super-high Potassium levels lead to cardiac arrest and kidney failure.  Right now, both organs are fine and I want to keep them that way.  Thankfully, a second, confirmation, test showed that the levels were still high, but not “go to the ER now” high.

The rest of the weekend and into the next blood test I’ve been experimenting with a low potassium diet to see whether this is going to help normalize those levels immediate post-chemo.

One of the lessons I am learning – cancer and chemo means everything I have learned about nutrition, eating, and survival gets turned on its head.  That and how grateful I am for simple physical acts right now – like wanting to eat something, being able to pick up my tea mug, maintaining my ability to walk and go up and down the stairs, and even having enough mental capacity to write this.

As of this update:

  • I still have my hair and the shedding does not seem to have sped up.
  • The spleen is going down dramatically – which is awesome because I looked 6 months pregnant and that was ALL spleen.  Plus it was pressing against my stomach, limiting my ability to eat. No bueno.
  • Some of the lymph nodes are shrinking – the treatment is doing what it is supposed to do.
  • I have a limited capacity for concentrating on text.  Writing-wise, I’m good for about an hour.  Reading-wise, I’m good for small chunks that don’t tax my mental capacity.  My usual diet of hardcore theoretical philosophy, business writing, and technical literature has gone out the window.  I’ve been renewing my acquaintance with my cookbook collection as recreational reading. It’s been nice.
  • My memory is a bit off – especially when I’m tired.  And, unfortunately, I’m not finding my notes nearly as helpful as they used to be (see above).  Bear with me if you’ve known me for a while, I’m just not sharp right now.
  • The worst is the occasionally burning/painful forearms.  Imagine post-workout forearm soreness but add a healthy dose of burning and the brain screaming that if you grab that thing or move this way that you will regret it.  Thankfully, this comes and goes. The doctor tells me this is normal. My hope is that a couple of days without getting my blood pressure checked (excruciating) or yet another needle in my arm will give my veins time to heal up.

We still have a PET Scan (radioactive scanning - I will become a SUPERHERO!) + a Port install (to give my poor veins a break) + regular blood draws to see if any of this is working.

Life will remain busy through Treatment 2 (March 10/11) as the oncologist and I get the remaining chemo prep tasks checked off, my partner and I finish putting together our insurance and financial tracking processes, and my body and mind get used to this brave new world.