Breaking Bad-ly…

Even with knowing that the end is getting closer, there are still surprises to be had. The final half hour of my case conference yesterday brought a few I could have done without.

In attendance were my doctor, lead nurse, case manager and Suzanna. And of course me, reclining on the bed wedge like a lady of leisure. Except I wasn’t playing the part very well I’m afraid. As always in great pain, my effort to breathe was hindering communication. Words needed to be chosen carefully, and the listeners needed to be patient in waiting for me to catch enough air to get my thoughts out.

The bulk of the meeting was spent reviewing logistics in keeping me here at home as long as possible. More equipment, more meds, setting baselines for when it’s time to go elsewhere. Details on the elsewhere part I’ll save for another post, we’re all still hoping that I’ll have a peaceful passing in my sleep with my daughter at my side. Maybe not what everyone would be comfortable with, but Suzanna and I both hope that this is the way it ends.

An hour into the meeting Suzanna excused herself for an important matter (maybe I can twist her arm into writing about it sometime),  I’m very proud of the strength that she has within her to share her limited energy with someone else who also needs her right now.

After she left, the conversation took an interesting turn. I suppose that the others felt more comfortable with Suzanna being absent when they told me how much my physical appearance had changed since each had seen me last. The observations were shared gently, and with concern not to offend – but I did need to hear those truths. For so long, the outside didn’t match the way I felt on the inside – it was validation for me that is not just a bad nightmare (as hard as Suz and I often wish it were).

The case manager then went on her way, leaving my doctor and nurse to do a quick examination. Without even touching me, the first observation is that my body is drawing energy to my core with very pale and cold extremities.

My doctor listened to my heart, and confirmed what I already knew. The heart beat was weak and irregular, pulse very slow. It’s one thing to notice when a heart beat is unusually strong, yet there’s an odd awareness, like an echo in an empty room, of when there’s an absence of a normal heart rhythm.

Feeling around my abdomen to check my organs, my doctor came across a few surprises that could indicate some upcoming challenges, masses that weren’t expected. Not unexpected with Erdheim-Chester, yet the locations a bit of surprise for me. It’s been well over a year since my last CT scan so we can’t really be sure of the sizes, but the fact that they could be felt through my skin alarmed me a bit.

We both however had quite a shock when she was palpating ever so gently  just above my left kidney, and a rib gave way. I wouldn’t say it hurt, it sent a shiver up my spine like listening to fingernails dragged against a chalkboard.

Tentatively checking other ribs, it would appear that at least a few have broken or softened due to bone tumours. As had my collarbone (which I’d already known has been significantly infiltrated since my pre-radiation bone scan last summer).

Then came the words that as I think back feel all jumbled and impossible – no more hugs. If a rib could give way with so light a touch, there’s a strong likelihood that even a gentle hug could could break more bones.

I’m a hugger with my loved ones. To excess at times I’ll admit. There are times when my daughter would be leaving to go back to school after a visit, I’d hug her as if my life depended on how much love I could transfer to her in a squeeze. Coming home was the same, I wanted to make up for the hugs we’d missed while she was away.

When my daughter was small, bedtime was accompanied by a “hug, kiss and a squeeeeeeeze”! My way to not only justify a second hug, but to prolong it for as long as that last breath of air would allow.

I’m going to miss the wonderful hugs that my friends offer me, I’ve always gotten great comfort from them. It’s going to hurt to tell them that I can no longer participate in our usual ritual when greeting each other or saying goodbye.

As for my daughter, I can’t even go there. We’ll figure something out to maintain the physical contact that is so important to our relationship, she deserves as many hugs from her mom as she could possibly want – the delivery however going forward might look a little comical to the outside observer.

Although I expected much of the territory that we covered in yesterday’s meeting, I will still left feeling blindsided.  Another ledge from which my fingers have lost their grip. How many more ways can a body and soul fracture until they become unrecognizable from a pile of shards?