On the Other Side of Cycle 2

 I got a lot of good information prior to my most recent hospitalization.

I’m happy to report that things were a little less hectic for my Cycle 2 hospitalization. I knew what to expect and had already established a bit of a routine so I wasn't walking into the unknown. Thursday morning, I had labs drawn and met with my oncologist at the clinic prior to admission later that afternoon. We reviewed some recent fine-tuned genetic mutation results that came back since I’d seen him last and these confirmed my diagnosis of Stage IV, Double Hit B-Cell Lymphoma, further validating that I am on the right treatment course.  My bloodwork indicated that I’m tolerating the treatment well so he was able to increase the dosages of three of the chemo drugs by 20% this time. We will do this evaluation at each cycle to try to keep increasing the dosage.

These are what my type of lymphoma cells look like

I recounted my negative experience with the intrathecal (lumbar puncture) chemo treatment at my last hospitalization and asked the doctor if he would put me under general anesthesia for my next one. Just talking about the experience was so unsettling for me that I was tearing up recalling it with him. He offered an alternative that I quickly accepted. Instead of three more intrathecal chemo injections over the course of my next five treatment cycles, he could instead add on two more hospitalizations after I am through with these first six cycles. Each stay would be three days and I’d receive a high-dose of methotrexate intravenously through my port. Then, my blood and urine would be closely monitored for up to 72 hours to ensure proper drug clearance with rescue meds being administered, as needed.  Maybe other people would choose a one-hour procedure while already hospitalized over an additional three-day hospital stay, but not this girl.  That’s how much I did not like the intrathecal chemo experience.

We also discussed what the next steps would be if the cancer relapses after this first round of treatment. My oncologist respects my informed and curious approach to this disease so he didn’t give me the “we’ll cross that bridge when we come to it” spiel. Instead, he provided me with the information I wanted to know.

1.      First, we’ll determine if my current treatment is working by doing another PET scan sometime in June, between my third and fourth cycles, to see if the tumors are shrinking. That would be a good sign. After the sixth cycle, we’ll do another one to see if they are gone. That’s the goal.

2.       If my post-treatment PET scan is negative (showing no visible tumors) then the next standard course of action would be to wait and observe to see if any symptoms return or biomarkers reappear and do periodic PET scans over the course of 5 years.

a.       If the cancer relapses during this time, the standard treatment option would be CAR-T therapy, a fairly new procedure that involves removing my white blood cells through a process called apheresis, arming them with a chimeric antigen receptor (CAR), then putting them back in my body.

b.      There, these armed cells will start to multiply then seek out the lymphoma cells like heat-seeking missiles and attack them. It’s pretty cool and I’ve been watching this technology develop since before it was approved by the FDA in 2017.

3.     That said, he also discussed a new clinical trial that I may qualify for which sounds intriguing and involves prophylactic use of an investigational off-the-shelf CAR-T cell therapy derived from donor T-cells.

a.       To qualify for this trial, my post-treatment PET scan would need to be negative (showing no visible tumors) then I would agree to be pre-screened with an investigational lab test to evaluate the presence of minimal residual disease (MRD) which identifies any remaining DNA mutations that may significantly increase the chance of my lymphoma returning.

b.       If the MRD is positive, I can enroll in the trial where I would be randomly assigned to a wait and watch arm (the standard of care) or to receive the off-the-shelf donor CAR-T cells prophylactically with the intent of preventing a relapse.

It’s good to know what next steps are available, especially since this highly aggressive form of lymphoma often relapses. Knowledge is power.

This hospital stay itself was much easier.

I had a few hours to kill before being admitted to my room, so I visited the Flourish boutique where I was fitted for a cranial prosthesis (aka, a wig) then I caught up on some reading and had lunch. My room this time had a similar view as the last time with the mountains in the background, but with the addition of a not-so green roof in the foreground. Ivan (my IV pole) was not as terrible over the course of my six-day stay and he gave me many extended hours with minimal beeping. He did, however, have a few tantrums especially when one particular nurse was on duty.  I’m not sure what that was all about, but she kept him in check. 

Eventually the roof did finally green up

 

I tried to make friends with Ivan

Because I’m in the hospital for such long stretches, I’m getting to know the nurses, techs, and hospitalists that rotate through to care for me. Yesterday morning, the hospitalist came in with a smile and said, “I was so happy to see that you were on my rounds this shift.”  He probably says that to all the patients, but he seemed sincere, and I was feeling the same. He was the one who got me through my BP crashes during my Rituximab administration at my first visit so I was relieved that he would be the one to navigate this next one with me. We did much better this time and I was able to titrate the dose up three levels before my BP crashed again.  When it happens, I get pale and really sleepy but am still conscious and able to talk.  My nurse hadn't seen me do this before, so when it happened, she went through safety orientation questions with me. “Can you tell me your name? What month and year is it? Do you know where and why you are here?” I was answering them all correctly, but at the same time I was quietly cringing that she might ask me who the current President is. That might have sent me crashing again, ha! After pumping me with a bolus liter of saline, we took the dose back one level and finished the bag out at that slower rate. This delayed my release a few hours, but I got home when the sun was still out and was able to have a relaxing evening before crawling into my own bed for a night of uninterrupted sleep.

I am so thankful for my tribe.

People from my past and present are showing up for me in beautiful ways, reminding me of the special friendships we’ve sustained over the years. These are just some (not all) of the acts of kindness shown to me this week.

• I have several out-of-town guy friends, Steve in Pennsylvania, Tom in Puerto Rico, and Ben in Italy who shower me almost daily with beautiful flower, water, and nature photos
• Patty and Chris, installed a mini fridge on my back porch for neighbors to drop off meals and packed it full of nourishing goodies just before I got home.
• Malika watered my outdoor plants, took in some mail, and babysat the new annuals that I didn’t get a chance to plant before leaving for the hospital.
• Jason & Maryline (of The Pollocks) invited me to dinner for a private listening show of their new album just before I went back into the hospital since I was going to miss their public show at the Batesville Market.
• John and Hannah Catherine brought a Friday night party to my room complete with nachos, a guitar, and much laughter.
• Bonnie and Sam met with my realtor and cleared some stuff out of my dad’s house
• Deb stopped by on her way out of town to bring me a Ben & Jerry’s non-dairy milkshake
• Jason S. visited on Saturday morning with a hot Americano and a bag of decadent pastries from Marie Bette
• My step-kids, Elliott and Emily drove from Richmond for a Mother’s Day visit and we had a fun and tasty picnic in my room
• Sharon brought be a bowl of kosher matzo ball soup for lunch one day.
• Sally made an emergency run to the store to replenish the stock of fragrant soaps I’d brought with me to the hospital give away to the nurses for Nurses Week (they loved them).
• Jane and Emily sidestepped the “no flowers on the oncology unit”* by sending me non-biologic flowers.
• Bonnie and Leslie tag-teamed my ride home and hauled the CLAX with all of my things back into my house.

                                                

                            

People have asked, so I inquired what this no-flowers rule is all about and was told that there are several reasons. The bacteria in soil and flower water can cause infections in immunocompromised patients, the smell of flowers could bother patients whose sense of smell has been altered by chemo, and flowers can quickly wilt and die serving as a sad reminder of the patient’s illness. Damn, that last one is dark! I’m almost sorry I asked.

Flowers that won't die

I’m getting used to this no-hair thing.

One thing I worried about when I knew my hair would fall out is how I would manage daily life without my faithful stim. I’ve been a hair twirler since I was a little girl and it used to drive my family crazy. This self-soothing action has been helpful at managing my stress and anxiety through the years so I've embraced it. Without the hair, though, I've got nothing to twirl. I think wigs are going to do the trick.

Caught myself hair twirling in a
shadow selfie once

The kids playing with my hat wig

I've always wanted
Cher hair

Apparently, King Louis XIV had a special room at Versailles filled with cabinets for his many wigs (ses Cabinet de Perruques). My mother also had an impressive collection and she used to delight in wearing her wigs to surprise people when picking them up at the airport or showing up to parties in disguise. I’m very glad that when she passed away, I couldn’t bring myself to part with her collection. I think they’ll come in handy this year.

Les perruques de ma mère

Channeling my inner clown

I’ll be home for the next 2 weeks, then back in the hospital for Cycle 3 on the 28th.

I suspect that I’ll feel quite fatigued for the first several days I’m back at home and will try to take things slowly.  That seemed to be the best course of action the last time.  Once I get my energy back, I hope to get outside to enjoy the spring weather I’ve been watching through the windows. I have several friends and family coming in from out of town next week which is something to look forward to.

Hope to see or talk to some of you while I’m on this break.