MCL - Scanxiety is a thing

MCL - Scanxiety is a thing
This painting pretty much captures my mood. Forgot what this was inspired by, but it was a homework assignment from a recent Abstraction class.

It's easier to go into medical checkup weeks when you are feeling good.

I've been feeling off for a few weeks. Tired mostly.  My digestion has been wonky. My joints and back ache. And the usual springtime funk has settled in.

We are in this spot where, on average, the medication I'm on starts to fail.  I have been doing really well on it and I've been feeling optimistic that I can get through 2023 without having to trigger the next step.

Over the past week, however, I haven't felt so sure.  The general lousy feeling that, historically, I've plowed through, now has more meaning.

Am I a hypochondriac if I'm already sick?

I have had an extraordinarily busy travel year so far.  Trips to New Jersey, Florida and Kentucky with one other trip confirmed and a few other possibilities for travel over the next 3 months.

I have also been pushing my body - I'm up to 170 walking miles for the year, have my yoga practice back to where it was before I got sick (minus attempts at hand balances, wheels and headstands), and am restarting my strength training practices.

Maybe I'm just tired. Maybe I've overdone it.

After the bi-monthly trip to the oncologist, I learned that I likely picked up the crud that's been going around. Otherwise, everything is still good.

All is still working as we hoped.  I have another 2 months before I have to worry about all this stuff again.

Next steps - take a chill pill, drop the dairy and add some Miralax for a week, and get some rest.  Let him know if things don't improve in the next week or so.


More resources to share:

The Patient Story did an excellent set of interviews with Kamran Mirza, MD, PhD - a Hematopathologist at Loyola University Medical Center. He talks about his role in diagnosing cancer and provides recommendations for how to read your cancer pathology report.

The Lymphoma Research Foundation released the March 2023 update on Relapsed/Refractory Mantle Cell Lymphoma. A new update is happening over the next week or so.  My hope is that we will get to a point where there is another medication bridge before I have to go into CAR-T. I'm perfectly happy taking pills daily and living my life.

Brian O'Sullivan and the Leukemia & Lymphoma Society met with Congress this week to discuss the challenges of accessing state-of-the-art cancer treatment and clinical trials.

The research is only step one.

Removing barriers for patients (most of them financial) so they can participate in clinical trials and access the treatments resulting from that research is the critical step.  A step that I fear gets neglected when we discuss finding cures for cancer.

Curing cancer is great - but pretty useless if the vast majority of us can't afford it or access it.

I have been lucky (so far). So many have not.  

Watching Brian navigate this world as he also lives with Mantle Cell Lymphoma, and fighting the good fight around our messed-up health care system with aplomb has been inspirational.  

And with that, we'll both take another 24 hours.