One minute we’re having a lively conversation as we walk up the stairs, and the next, Julie is plummeting to the ground several floors below us. My grab for her arm is useless. I look down. Her legs are oddly bent and she’s not moving. I jolt awake as my dream self begins running down flights of stairs. I’m devastated but Julie Andrews isn’t dead, of course. It’s the middle of the night and I’m trying to process what the PET/CT results really mean.

We got Ken’s scan results last Monday. Things started oddly. I’d been worried all weekend because my team was supposed to present to our company president Monday morning, at the same time that Ken and I were supposed to meet with his oncologist. The Fates intervened for some reason and canceled the team meeting early that morning. Ken comes first but that doesn’t make the juggling act any less stressful.

Anyway, usually, Ken gets infusions for six or more hours so we plan for a full day at the cancer center but on Monday, the nurse said we might be out by noon, depending on his magnesium level. I looked at her and said “Unless he gets chemo, right?” “Oh, yeah, right, unless he gets chemo.” He needed two hours of magnesium and she got him all set up for that. Then we got this weird phone call from the home infusion company, trying to pick up Ken’s chemo pump. I told them that he was literally at the cancer center getting prepped for chemo and that they were confused! Turns out that I was ….

Shortly after the nurse started his mag, we were called back to the patient rooms and sat quietly for a bit, listening to the IV pump sending magnesium into Ken’s veins. His oncologist came bustling in and told Ken to get up on the table. That was also very unusual, as we normally talk BEFORE the examination. Ken is super skinny, which is apparent when the doctor pulls up Ken’s shirt to listen to his lungs. His lungs are clear and they talk for a minute about the skin lesions. The doctor tells Ken that he can climb off the table and sit in one of the plastic chairs but the doctor remains standing. He’s upset.

“The tumor below the waist looks pretty good,” he says. The wording is wrong. My heart starts to thump in my chest. “But,” he looks at Ken, then me. “The rest of the scan is not good.” My eyes fill but I force myself not to cry. I have to stay calm and get the details. I watch as Ken’s face crumbles and I start rubbing his knee. Ken doesn’t ask many questions but I do. We talk with the doctor for nearly an hour and I remember thinking how lucky we are that he can stay with us, that he has time to continue answering question after question, time to help Ken calm down.

In a nutshell, the cancer has spread into his liver and throughout his lymph system. There are spots on other organs “suspicious for neoplasm” which is medical-speak for “there’s cancer here and here and here.” In a Harry Potter-esque moment, we talked about how peacefully Ken will die. He’ll “sleep to death” at the end. It won’t hurt; there will be no blockage in his intestines. Is that reassuring? I think about how I’ll tell our children. I’m starting to feel sick and I realize that I’m still rubbing Ken’s knee. He doesn’t even notice; he’s trying not to cry, trying so hard to be brave. He gives a little speech, thanking the doctor for all that he’s done. I tell him to stop giving his eulogy because the oncologist wants to keep looking for options, doesn’t want Ken to give up. The doctor chuckles and tries to give us encouragement but I can see how upset he is too.

For now, Ken is going to take a chemo pill that won’t stop the cancer but will slow the growth while they look for new treatments. We discussed surgery. Sometimes they successfully remove cancer from the liver but it’s not an option for Ken right now. He’s lost too much weight, making the surgery difficult for him to endure. On top of that, the cancer is growing during chemo; imagine what would happen if Ken had to stop chemo for two months for surgery and recovery.

The kids all know that treatment isn’t going well. The older two have a few more details but what I didn’t tell them, they can see for themselves. Over the weekend, Ian and I talked about what we’re afraid of: I suspect that you know what I am afraid of.  Ian, my little Ian, is afraid that his daddy has stopped fighting.

There’s not much more to say except that I’m sorry, sorry that this is another sad blog entry, so sorry for all that Ken is going through, and sorry too for all that we — his family and friends — are enduring from the sidelines.

Send us your positive thoughts, your hope and your strength, help us to give Ken the strength to continue fighting. And if that isn’t our future, help us to find peace and courage to accept. Much love to you all….

 

Yep, it was a year ago that I said to Ken, sitting in the waiting room, “If it’s cancer, the doctor is going to tell me to come back with you.” And then the doctor himself came into the waiting room to call Ken back and say to me, “Why don’t you come, too?”

That’s all it took to start us on a journey of self-discovery that none of us wanted to take. It really is, you know … a journey. We are learning how we respond to stress, sorrow, grief, fear, pain/seeing someone else in pain. Believe me; this is no Hollywood movie with the dialogue scripted and the lines perfect (quotable!). But I remain very thankful for all the really wonderful people I encounter all the time.

Some of them enter our lives briefly while others gift us with their ongoing presence. There’s the oncology social worker who pulled me aside on Monday to say that I look like I’m crumbling — “are you sleeping at all?” — and to ask how she can help me. “Do you ever cry?” She asks. I’ve known her for a year now; so I rolled my eyes at her (she laughed) and said, “Only when I have to.” When I was a little girl, my momma used to say “You get a limited supply of tears in your life so don’t waste them.” I think about that a lot because it feels like I’m on a journey with more stops for tears down the road.

Ken’s having a very hard time kicking the pneumonia. He’s been off work since Christmas and the doctor just extended his disability for at least another month. His color is poor; his weight is still dropping. And he’s terribly cold pretty much all of the time. For awhile, we were having a thermostat battle. He would bump up the temperature in the house to a balmy 80ish and one of us would check it later when we were stifling in the heat. Since having the whole house super warm wasn’t helping him to stay warm, I got him a really comfy heated blanket (Costco!) AND a space heater on wheels (Meh.com!) so we can move it around with him.

We’ve been struggling a bit with medication management. He has a drugstore full of pills in the bathroom — stuff for pain, diarrhea, constipation, nausea, sleeplessness, vitamin deficiencies — you name it, he’s been prescribed it. With these last hospitalizations, they reminded us to pick up our scripts on the way home but no one even explained what the scripts are for. Back to my friend google for assistance.  Really, if we could just get the pain management part under control, it would improve things for him tremendously. We’re on day 3 of a new strategy for pain management and while things were not good last night, I am hopeful that by day 5, his pain will be more easily managed than it is right now.

Fingers crossed for positive or even neutral news from his long-delayed PET/CT.  It’s finally approved and scheduled for this Wednesday, results expected at his next chemo appointment.