Adverse Vaccine Reactions – The Price We Pay

A few weeks ago on Twitter, someone responded to one of our posts about Lilly’s vaccine-induced meningoencephalomyelitis by saying essentially this, “It’s the price we pay for having a low incidence of rabies in the U.S.” Oh, I get the realities and perils of population medicine. Yet, the comment got me thinking about money, suffering, and a potential higher purpose.

The financial panic over Lilly’s seemingly endless treatment costs here at Chez Champion of My Heart remains fresh. While the shock wears off, an uncomfortable acceptance emerges:

• No matter what we try or do, this may not end well.
• We must make some decisions, set some limits, and protect ourselves and Lilly from all manner of suffering.
• Another major relapse likely marks the end of this journey.

The good news on the cost front is that our neurology team has agreed to do the 4-injection chemo / cytarabine cycles for $200 each, rather than $400 each.

Without giving you TMI about my marriage (smirk), I’ll just say that there is disagreement in our home over whether to do the chemo or not … and if so, for how long and where.

I’m still processing — in my heart and my head — the other answers and non-answers I got from our neuro team last week.

As I write this, I have not had a chance to hash through things with our family veterinary yet. I have, however, confabbed with other friends who are veterinarians or longtime dog families and service providers. Those conversations are helping me cope with this ongoing medical emergency inside Lilly’s noggin and its impact in my life — both emotionally and financially.

That brings us back to this idea of THE PRICE WE PAY.

My initial response to that comment was something like: True, but it sucks to be the ONE paying the price.

I don’t mean this as angry as it probably sounds, but let’s be clear on this:

WE (as a dog-loving society) are not paying this price. I am. Lilly is. Tom is. 

Since Lilly’s massive and almost-deadly adverse vaccine reaction relapse in August, I have:

• Not done a single workout.
• Eaten far too much sugar.
• Not gotten a full night’s sleep.
• Often not even had enough time / energy to shower.

People love to remind me to “take care of myself,” but that’s harder than it sounds — especially when you take into account the loss of Tom’s mom in May, Lilly’s illness that began in January, AND the fact that there is a good chance we’ll lose my mom soon too. (I spend part of 3 days each week with her.)

I snarked at my mom’s priest earlier this year when she trotted out the “Take care of yourself” message. Doing so, I told her, meant either working less or sleeping less — neither of which I can afford to do. She replied, “Then, you need to make the most of things you have to do anyway.”

Touche.

Others have suggested meditation. I’m terrible at sitting meditation, so since the mid-1990s or so, I’ve done yoga instead. For me, it’s like meditation, but I get to move. Still … I haven’t gotten on the mat in a VERY long time.

Think about what I’m already doing, then:

• I’m already up at night taking care of Lilly and not being able to go back to sleep.
• I’m already worrying / sobbing for at least an hour or two each day, but especially at night.
• I’m already experiencing grief or preemptive grief on a near-constant basis.

There is a Buddhist meditation practice called TONGLEN. I began using it decades ago after a friend died of breast cancer and our shared yoga instructor gave me some recordings from Pema Chodron talking about “Meditations for Difficult Times.”

Forget the typical breath-in-the-good, breath-out-the-bad meditation.

TONGLEN says to do this instead:

• Experience your pain in its full glory. Don’t push it away or resent it. Live it.
• Remember that millions of other people are suffering in similar ways this very second.
• Feel compassion for yourself and for them.
• Find and release a sense of love, ease, and comfort for everyone.