Update: All the Other Health Stuff

Addressing all the non-lymphoma health issues + report from the 2024 insurance transition.

Update: All the Other Health Stuff
One wall of the Stabler-Leadbeater Apothecary in Alexandria, VA

We have hit a milestone in this whole lymphoma journey.

I got an Annual Physical.

These days, Physicals seem to be more conversations rather than exams.

  • A depression scan - currently mildly depressed, but still functional.
  • Blood tests - the ones that I haven't had in awhile. I'll let you know if they find any further surprises.
  • Conversations about my blood pressure - which is where we want it right now. Officially "controlled." Yay!
  • Conversations about my diet and exercise - the doc is happy with what I'm doing right now.
  • More vaccines - Shingles and Pneumonia this time. I go in for the second Shingles shot in April.
  • A request to get a mammogram. I'm due, but considering that they are expensive, painful, difficult due to my small chest, I have a history false positives, and treatment if it IS positive will likely do more harm than good, I've been hesitating.

I asked the oncologist via messaging whether he thought I should get the mammogram. His response - "Couldn't hurt." Um, yeah, it does - both physically and financially. We have just restarted the clock on insurance and are in the deductable period. I'm going to hold off until I see him in person in March.

Chronic illness, especially serious ones, means that no-brainer decisions such as vaccines and standard screening tests, suddenly become more complicated. If I had the type of lymphoma where I have a miserable year but will be fine afterwards, I would have just gone ahead with the mammogram.

In this case - everything gets more complicated.

My decisions are based on quality of life vs. quantity of life. My idea of quality of life does NOT include multiple doctors' visits and (if it turns out I DO have another cancer) more treatment that doesn't solve my BIG problem.

I feel good right now. I know I have a systems error. I'm not going to play whack-a-mole chasing the numbers. And I REFUSE to bankrupt myself or my family chasing a "cure."

Speaking of bankrupting my family... (possible trigger warning)

Insurance transition season has been mostly uneventful. Mostly.

Staying with our current insurance helped. A couple of forms in late December. A confirmation phone call in early January. An hour of administration spread out over a few days, but no drama.

Apparently, February 1 is the new January 1 for insurance transition season.

I was supposed to get a medication delivery yesterday and noticed that I didn't get the morning delivery email. I have another 10 days worth of medication, so I figured it was worth checking in.

Apparently, I was not alone. My specialty pharmacy was swamped and I was on hold for 30 minutes before I talked to someone. I was quickly transferred to Patient Access. These are the folks who help patients afford these miracle drugs.

"Um, yeah, your medication got rejected." The lady on the other side of the phone sounded underwater. I was proud of myself for not freaking out on her.

After a few maybe overly pointed questions, I managed to get out of her that my health insurance said I was fine, but a group called PrudentRx had rejected the co-pay.

Bad news because the co-pay would be about $44,000.

I don't come close to $44,000 on disability right now.

I had never heard of PrudentRx, but they are a 3rd party co-pay insurance included in the insurance packages employers put together with Benefits brokers. We have never received this type of information during the benefits selection.

I called PrudentRx. Nope, not covered. "That employer didn't renew the benefits this year." Considering we weren't told we had these benefits last year, not surprising.

Tamping down my anger at (once again) having to make life-or-death decisions without important information (thanks US Health "Care" system), and my anxiety over the prospect of stopping the medication I'm on, I called the specialty pharmacy back.

This time, I got one of the more usual voices I talk to each month.

"Don't worry, we have you taken care of. Just so you know, the pharmacetical company (BeiGene) will pay your co-pay. Sorry you had to go through that."

Two lessons learned:

1) Check the Prescription benefits even MORE carefully next year. Turns out we are on the hook for even MORE money for prescriptions since they no longer count towards our overall health insurance co-pays and deductables. We chose the EXACT SAME coverage. Maddening.

2) Expect at least 1 high-anxiety moment each year at the beginning of the year around treatment coverage and costs.

If, at any point, it looks like I have to pay $44,000 for medication per year (at minimum), or hundreds of thousands of dollars for treatment, I'm going to instead use money for at least one more blow-out vacation and hospice care where I'd have access to spiffy drugs and people to help keep me comfortable.

I refuse to bankrupt myself or my loved ones dragging out my death.

Quality of life over quantity of life.

Two positive benefits that came out of this year's insurance transition:

1) I got assigned the case manager I asked for last year. I now have an internal nurse navigator from Blue Cross Blue Shield - something I missed when I transferred from Cigna in 2023. I don't need her right now, but she will definitely come in handy if something needs to change with my treatment this year.

2) Blue Cross Blue Shield has a service called CloseKnit - which does tele-medicine and provides a Wellness Coach. I've been working with their Wellness Coach service the past few months as I've tried to get my blood pressure under control and improve my physical (and mental) stamina enough to get back to work.

Right now, the Wellness Coach and I are working on stress management.

I have discovered that I don't have the stress tolerance I used to. I've never been great in crowds or around high-drama people, but now even the grocery store triggers anxiety. That anxiety manifests in my blood pressure along with the usual physical signals.

Thank goodness that many years of therapy before the pandemic and the diagnosis helps me identify what is going on, but it doesn't make it any easier to deal with.

With some accountability from the Wellness Coach - I've been practicing 5-minute breathing exercises after my morning yoga.

Practice on the mat. Remember to apply it in life.

We'll see how that goes over the next year.

Other updates:

  • We are trying Sunbasket this month. So far, so good. I'll have a detailed post on our results with it in March.
  • I've been working on some Public History courses in Coursera. My goal is to finish the first course this week. I also need to get back to transcribing with Alexandria Archaeology.
  • The book is still in progress. I am doing a major rewrite of the first third - which covers the beginning of my journey. Painful stuff, and I haven't been in the right mind frame this week. Finishing the course I'm working on will (hopefully) clear up some bandwidth.
  • I have my first appointment of the year with my Ticket to Work case manager. Despite putting things on hold, I actually have progress to report to her when we talk on Monday. I'll talk more about it next week.

Anyway, Happy Groundhog Day! Talk to you next week.