Living between two worlds . . .

Ten thirty on Thursday evening, we're sitting in the living room, Bob is sleeping, candle burning, I'm typing, Rocco is pacing from room to room, growling and barking at an unseen threat through the patio screen door, then front window, back to patio door . . . we must be surrounded . . .

I've joined Bob in the Land of What Day is It? I'm not working for the time being and each day seamlessly becomes the next, with little to distinguish them from each other. A tiny taste of what life has been like for him for the past eight months—no, I take that back. It's rather arrogant of me to even say that, as really, even though I live with him, I have no idea what his life has been like for the past eight months. None at all. A life on hold for eight months and counting. Disconnected from the life he knew, the people he knew, friends, co-workers, a job, his photography, hiking, camping, kayaking . . . not to mention the great big C word looming above, every second of the day, and the physical reminders that tag along—the pain that never leaves, the skeleton looking back in the mirror, the face swollen from steroid pain medications, arms and belly covered with blotches of bruises from IVs, shots, catheters . . .the mental ones as well—the cloudy thoughts that drift in and obliterate everything else, the sleepless nights, the sleepy days . . . top that off with the heart issues and their many layers deep . . . I really have no idea. No idea whatsoever. And should just shut the hell up, thinking I'm getting "a tiny taste . . ."

I hold my breath each day, trying not to think of what might go wrong, what could go wrong, trying so hard to hold onto the good, good days we've had this week . . . I have to remind myself to stop and take deep breaths many times throughout the day. . . we've had four days of peace and quiet, just the two of us hanging out. For brief nanoseconds, our lives feel normal again, then a pill bottle or a heating pad or the sight of blankets on the couch quickly reminds me that it is far from that.

I flit about the house, the yard, popping in to check on Bob, taking short walk with him and Gaia—Bob can outpace Gaia these days, as the ol' dog is moving slower and slower. She's taken to sleeping outside nearly 24/7 and only comes in when I coax and plead, practically having to drag her 100 lb. body inside if it starts raining or gets too hot and humid. Makes me sad, watching my big old doggie grow so old before my eyes. She still likes to go on walks, slow as she is, so I try to get her out every day, even if it's just for a block or so, to sniff, pee a few times, and uncreak her creaky bones.

Bob has been feeling pretty good these past few days; says his mind is raring to go but his body just can't keep up the pace yet. I remind him that he just spent nearly three weeks in the hospital, to cut himself some slack and take it little by little. I told him today how happy it has made me, this week, to see him moving about so much more in the house—up and down stairs, into the kitchen to make a sandwich, outside to get the mail. Haven't seen that much activity from him in months and months . . . He says, "Yeah, but do you know just how hard it is for me to do all that? Takes everything out of me . . . " He tires easily, and we really have to schedule his activities and take lots of rests and breaks in between so he doesn't overdo it.

It's hard on him to sit for long, not just because of the pain caused by the tumor but because it takes many muscles to sit up straight, and he's lost so much muscle mass and strength over the past several weeks. He has been diligent about keeping active, though, with our walks, and with strengthening and stretching exercises he has from PT and OT, and I hear it in his voice, the determination to get stronger. He's still so thin—107 at the doc's office today—but the thrush in his mouth is nearly gone and his appetite is getting stronger every day, so we're hopeful that he'll be able to put on at least a few pounds again (and not just from ice cream). We shared a Jack's pizza tonight; "back in the day," Bob could put away a whole pizza. Tonight, he maybe had the equivalent of a couple pieces. But he did have room for the Heath blizzard that my sister, Gretchen, brought over from the DQ. My mom, my niece, Brittany and Gretchen's fiance, Brian were along for the ride and we all sat out on the patio, savoring our ice cream in the long shadows of the waning day.

Had an appointment with a new doctor yesterday (Wednesday), this one, a primary care doc. He is to be our go-to man, the central hub of Bob's care. We were assigned this doctor after the most recent hospitalization, after I, once again, begged and cried for someone to take over, for one party to step up and be in charge once and for all. I'm sick and tired (literally) and sorely under-qualified for the job and Bob's situation has become so complex and complicated.

Technically, we'll be working with two doctors from primary care—one is a resident, Doc G, whom worked closely with Bob over the past two hospitalizations and really knows his shit, to put it frankly. The other is Doc G's supervisor. Both of these doctors are amazing—talk about bedside manner. They listen, they ask questions, they allow us time to ask questions, to vent a little, and then offer solutions to our issues . . . what a concept. . .This appointment was basically an informational one, though they did give Bob a thorough exam, to make sure there were no specific concerns or anything suspicious or out-of-whack. We'll be checking in with this team on a regular basis—as frequently as we want, we're told, but certainly at least bi-weekly—since Bob's condition can take a turn for the worse in no time, as history has proven time and again, so the goal is to stay on top of things. I told these docs, as I told the ones in the hospital, that from here on out, I will be pointing out every hangnail, every bruise, every little sign and symptom that seems out of the ordinary (though, what is ordinary, with Bob's situation?), so get used to it.

Tomorrow, we meet with oncology, as a follow-up to the most recent hospitalization, and to really start talking about where do we go from here. Our plan, upon talking to the primary care docs yesterday, is to take this time that Bob needs to recover, to talk to as many doctors and key players as we can, about the options of Bob's treatments, the pros and cons, the outcomes, the potential risks, do they outweigh the benefits (or vice versa) . . . really try to collect as much information as we can about what his choices going forward are. Next week, we meet with cardiology for sure, not sure if anyone else is on the schedule yet.

I weave my time between two worlds, one where I'm with Bob, helping him however I can, going to doctor's appointments, or ER visits, hospital stays, pharmacy runs . . . living in a house filled with constant reminders of this unwanted intruder in our lives, table full of pill bottles, fridge full of Ensure, a cane in the corner, sofa-turned-bed . . . the other, where I join my sisters and my mom to help plan Gretchen's wedding, or meet a friend for lunch, head to Target or the grocery store . . . I laugh at something funny and suddenly, can't help but think how long it's been since I've heard Bob laugh a real, hearty belly laugh. . . I meet my sister down in Minneapolis to help her pick out flowers for the wedding, and ask Bob fourteen times if he's okay with me going, until he snaps, "You keep asking me—just go, dammit!" I am flooded with guilt, leaving him alone, and call him several times while I'm gone. Many times, he just doesn't answer, which fills me with dread, so I call the home line, and when he answers, I know I've wakened him by his slow, slurred voice.

This cancer in our lives, is never far from my side. Like a prison guard, it's beside me, moving with me as I move through my days, stopping when I stop, running when I pick up speed. It sleeps in my bed with me, hops in the car when I head out to run errands. It will escort me to my sister's wedding, even as I laugh and chat with guests, and be my partner on the dance floor. I say all this not to grasp for pity or sympathy. I say it because it is all I know. But to say all that says nothing, means nothing, really, because I am not the one with cancer.

I'm hoping upon hope that Bob can attend Gretchen and Brian's wedding, even if it's just for the ceremony. Penny and Jim will be up, so they can take him home when he's had enough. I know it would make Gretchen's day, to see him there. But we take each day one at a time. Saturday is a day and a half away. Too far in the future to be making any plans.