“Oh, yeah. Oooh, ahhh, that’s how it always starts. Then, later, there’s running and… screaming.”

Jeff Goldblum knows how to deliver a line with that stuttering arrogance of certainty. In a Jurassic Park movie, he delivers the above line in a glib way to newcomers to the abandoned park. He knows better than to be lured into the beauty of the danger around him. Gotta say, that’s certainly how it felt today.

We’ve established a good routine in our little room in the little hall. One of Nine’s latest prosthetic is healing nicely and very rarely do the looped stitches holding it in place pull. The quiet time in the overnight is when getting office work done is the easiest, although the days were settling in as well. It was very oooh, ahhh.

Then… then there was later.

Rich woke up and sat up with an odd and puzzled look on his face. His eyes closed and he began to moan through slightly open lips. Immediately I pushed the nurse call button and, hearing them in the hall, called for them to come in quickly. We all tried to determine what the problem was and were shooting questions at Rich to get him to respond. We finally got through to him and he said one simple word….“Pain.”

That started a whole ‘nother flurry of questions. He had pain in the lower sternum. Talking was difficult. His eyes were closed, his face tight and he had difficulty answering any questions. The moans were coming from deep within with every shallow breath. Asked to take a deep breath, he tries and the pain jumps. EKG ordered. Bloods taken. A portable chest X-Ray. 67010_20140821_123145_displayNasal cannulas deliver oxygen. Everyone tossing out ideas to the cause. Little by little, the pain recedes. Rich lays back, tired but comfortable. He’s able now to give us more insight into his side of this experience.

As the test results come back one by one, and causes are eliminated, it’s determined that the probable culprit is a chemo induced mucositis located in his esophagus. Many of the chemo drugs will irritate the lining of the entire digestive tract but most often presents in the mouth. The injections of Kepivance before admittance and the daily glutamine are supposed to help keep this at bay. We review the mouth care regimen and debate other courses of action. Most sources agree that it is all but unavoidable during the stem cell process. We’d prefer to be outside the norm.

Although exhausted, Rich returns to himself. We order a light lunch of clear broths, tea, jello. A very long nap follows.

During this time, a number of specialists and nurses from the unit stop in to discuss this recent development with me. It’s decided to continue on with the protocol as intended, step up the mouth care using sponge brushes and rinses, add in an anti-fungal and be vigilant. Finally, everyone disperses to attend to other patients. Alone, as Rich sleeps, I can’t help but ponder what could have been. If I’m at work and this happens, by the time I get to the hospital in the evening, it would be almost a non-event. I look at Rich now after we had dinner, played a few games of backgammon and walked some laps in the little hallway… there’s no sign of this morning’s events. Would that have been better? Would I have gotten the full story from the nurses, from Rich? If I did, is experiencing it in person “easier” in the long run than the imagination? Could I be blissfully ignorant? Would the nurses have heard his soft moans? How long would it have taken for someone to have come into his room to check on him since he was beyond being able to push the nurse call or raise his voice?

These are the difficult choices caregivers make… where to be when. I struggle with it every day. Finding the balance between work and cancer. Not knowing how long this journey will be and when we can feel out of the woods without looking behind to see if we’re being chased by raptors only to find one popping out of the bushes in front of us. I feel that we’re partners in this journey and it’s not one I’m comfortable having him experience alone. At night, when there is the quiet of the sleeping patients, I can keep up with my office work and continue to work on improving my spreadsheets. I need to be able to glance at my husband and see the peaceful look of sleep on his face. Watch his chest rise and fall with ease. Would I, could I, sleep at home and not know? I honestly doubt it. As the hours go by, I curl up in the recliner, gowned, rubber gloved hand on his arm and close my eyes too. As far as I’m concerned, that’s the way the universe, my universe, should be. Together. This is a terrible/terrifying journey. If I were in Rich’s place, if that switch were possible, I would want him there to hold my hand as we find our way.

40632_20140829_101354_displayWe have some odd chemical companions on this journey, they have been what, in any other situation, we would do everything to avoid. But, as Dr Ian Malcom says in Jurrasic Park, “Life breaks free. Life expands to new territories. Painfully, perhaps even dangerously. But life finds a way.”

This is our way.

Together. Only way we know how. For life.

Let’s just try to do it without the running…and…and the screaming.

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