Chemo continues

Susan is doing well after her 6th Carboplatin infusion this week when lab work showed her blood counts were okay. She continues to be strong, fairly independent, and with the right amount of sassy. We’ll be back to UCLA in May for her next MRI, when I expect she may shift therapies to Temodar + Accutane.

We were invited again to participate on a panel at UCLA’s annual brain tumor conference several weeks ago. My mom joined us for the Saturday session and our son Adam sat with Susan and I during the “Understanding the Family Experience” workshop. Mindful of sharing time with others on the panel, I did my best to summarize Susan’s situation in as few words as possible and help her to interact as well. I asked her to share what it’s been like to go from being a working mom to a brain tumor patient and relate how she’s been able to with her condition for nearly five years. When she had trouble focusing her thoughts and finding words, I was not too surprised or disappointed since that’s an honest example of her experience. Sometimes thoughts and words get stuck.

We shifted attention to Adam as I said how proud we are of him and his siblings for stepping up in courage and responsibility when our world was turned upside down. He spoke well. One thing he shared was how glad he was that I had been honest with the kids from the first about their mom’s illness and its uncertain outcome. That approach had been validated at an earlier workshop for children of parents with cancer – it’s best for parents to be forthright about this stuff because kids are perceptive anyway, and can handle even hard things when the family stays close, loves well, and keeps communications open. Adam publicly complimented me on taking good care of his mom. He publicly received an immediate raise in his allowance.

The brevity of the hour became apparent after the other panelists shared and we had just a few minutes for questions from those in the room. One mom and caregiver whose husband has a brain tumor asked us what we do to stay positive. At the core of her question was, “Is there hope?” I desperately wanted to answer, and waited my turn. We heard about having a hopeful, forward-looking focus from one caregiver who tells her husband things like “When you get better” instead of “if.” We heard from a brain tumor survivor in the audience who shares the joy of guitar and banjo music with other patients at a treatment center. I was about to have my turn when the moderator interrupted, “I’m so sorry that’s all the time we have. People are beginning to arrive for the next workshop.”

I wish I could have said a word about our hope. I wish I could have spoken about God – that our hope is from God and is in God and is God. Our hope is as real as a positive word and as uplifting as music – but more so. Our hope has been infused in us by the same One who inspired the psalmist to say, “In the Lord I take refuge. How then can you say to me: ‘Flee like a bird to the mountain…When the foundations are being destroyed, what can the righteous do?’” His response in Psalm 11? “The Lord is in his holy temple, the lord is on his heavenly throne…” Our circumstances do not matter. Cancer does not matter. Death and dying do not matter. The Lord is on his throne – everything’s still okay.

Of course we hope and pray for healing. Of course we stay positive. Of course we celebrate simple joys with others. But these will not save us – only God can, and has. Susan knows where she’s going, and even in her improved condition, she joyfully and peacefully anticipates heaven. More than hope, we have heaven on deposit. Already its citizens, we’re just passing through. I wish I could have said that, but I guess I just did.