Private heartache, public knowledge

We’ve been sitting on a story at our house. One that was not mine to tell… but one that had been shared with a small group of people. My beloved bearded spouse is an introvert, as much of an introvert as I am an extrovert. (God has a funny way of doing that…) When he was ready to share his story publicly, now I can share more broadly, too.

Ken was diagnosed with prostate cancer in January. Scans in February and March revealed that his cancer had spread outside the prostate to his bones. It was a shock. His PSA was in the normal range, only elevating after the biopsy. He had some back pain but attributed it to arthritis. He had some other symptoms, but they seemed to be the natural side effects of aging. To add to our confusion, the discussion of his diagnosis was delayed by the original urologist… and not explained by the radiation oncologist. Ken looked into a study at NIH, and while he could have been enrolled there, his tumor load was too high for optimal treatment.

It has taken a while to build our treatment team. A false start with one oncologist, who basically wanted to throw the kitchen sink into the protocol, was not a good match. Finally, we were able to be seen by Dr F and developed an immediate trust in his thoughtfulness and clear communication. He characterized the treatment plan as “putting out the house fires.” There’s a lot that won’t happen, due to the spread of the disease by the time it was diagnosed. We are moving forward, as best we can.

Treatment #3 was last week for the standard protocol: premedications for nausea and allergies, and then an infusion of Docetaxel. The infusions are short, about 90 minutes. A lot of the time is spent waiting… for the labs to come back, to meet with the oncologist (whom we LOVE by the way), to talk with the scheduler. This is the routine every cancer patient and family knows.

The weeks in between treatments have a predictable rhythm, too. Reactions to the chemo. Reactions to the booster shots. Things like oral thrush and bone pain. Dealing with fatigue, steroid mood swings, and “metal mouth.” Coping with significant hair loss (including his beard!), hot flashes from hormone therapy, and the need for vigilance about exposure to COVID and managing his blood sugars.

But the hardest part of all of this is knowing the cancer is metastatic. We are working towards remission. Not a cure. That’s the reality of metastatic cancer.

While we certainly appreciate your prayers, I am going to be blunt. We don’t need to hear you are praying for total healing. That ship has sailed. If Ken does achieve remission, it is a breather before his cancer comes back. So please pray for remission. Pray for tolerance of the chemo and boosters. Pray that his bones stay strong and there are no spontaneous fractures. And while we appreciate that many of you have firm opinions about “cures,” and various herbal concoctions, we are sticking with science. People share all kinds of theories that theyhave heard about or read about… and I’m sorry, but 99.9% are pure hokum.

I am learning how to cook foods that taste good to him. His taste buds are affected by chemo, as is his digestive tract. Foods that he tolerated early on are now extremely unappetizing. And his favorite beers? Many of them had to be given away because they tasted like the can!

Where is our faith in all of this? We are walking this day-by-day with God’s care felt and known in new ways. Cancer sucks. God does not. Cancer kills. God does not. Cancer causes stress and fear and anxiety. God does not. The feelings we have are real… the challenges are constant. But the reality is simply this: God has not changed. Our fragile humanity, our earthly bodies struggle. Our feelings flail with doubts and sadness, and some anger, too.

27 Why do you say, O Jacob,
    and assert, O Israel,
“My way is hidden from the Lord,
    and my right is disregarded by my God”?
28 Have you not known? Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He does not faint or grow weary;
    his understanding is unsearchable.
29 He gives power to the faint
    and strengthens the powerless.
30 Even youths will faint and be weary,
    and the young will fall exhausted,
31 but those who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.

– Isaiah 40:27-31, NRSV

God remains. In the face of everything painful and distressing, God remains. I can’t explain the why’s and I’m not going to try. But the compassionate love of God is there. Our way is not “hidden.” Ken’s pain is not unseen. The questions I ask are not unanswerable. We walk and wait in faith. And we are experiencing the love of God through God’s people in ways I cannot even begin to explain.

Walk with us in hope and in deep peace… Thank you, friends…


P.S. Some of you may be interested in our Caring Bridge page. It is a private page, so if you are interested, please get in touch and I’ll give you access.

P.P.S. Yes, we appreciate support via MealTrain or GrubHub. But honestly, knowing you are praying for us is a huge source of strength.

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