An Unwanted Journey: Day 1092 - Home at Last

It's late Wednesday evening and I'm sitting up slightly in my medical bed situated right beside the family room's patio doors. I've just awoken from a long, recuperative sleep to the sound of my youngest son preparing some food for himself in the microwave. My wife is nearby, trying to get to sleep and asking me many questions about how I'm feeling, if there is anything she can do for me, if I want some food or something else to drink, if I need her to turn on the light for me, and so on...

In other words, it's wonderful!

Leaving hospital is an interesting experience all on its own. Once a decision was made to discontinue chemotherapy, the wheels were set in motion for discharge. As far as the medical system is concerned, once a bed is theoretically available, then all kinds of energy is released to make it a reality. Yesterday, for instance, the doctor had said casually to me in a kind of quintessential Columboesque "one more thing" moment - about an hour or so after communicating my decision to him about discontinuing chemotherapy - that I probably no longer needed the PICC line. Within another half hour, the PICC line was gone!

Then, in quick succession, I had the CCAC coordinator working with my wife and me to schedule home care nursing visits, arrange a visit from the occupational therapist, ensure prompt delivery and setup of the wheel chair, commode, and medical bed, and to prepare a preliminary schedule for a home assistance team to give my wife some relief from the 24/7 care she will be providing me. That was followed by an in-depth consultation with a dietician helping us both with ideas and recipes for a high-protein diet. Then there was a consultation with the spiritual care provider.

Well, you get the picture.

By 11:00 am this morning, all that was left was to get some prescriptions explained to us both, pull on street clothes for the first time in 10 days, pack up my computer and assorted electronics, get into the wheel chair and be transferred into the passenger seat of our 2009 Camry Hybrid. I thoroughly enjoyed seeing the snow on the ground and all the familiar streetscapes as we drove home.

Getting into the house was very difficult given the continuing edema in both my legs, but within a few minutes I was on the edge of the bed thinking "this is where I want to be!"

The occupational therapist arrived in the middle of the afternoon and was exceptionally helpful in getting orders for additional items needed to make the stay at home more comfortable and safe. She gave us suggestions to improve my safety in getting to and using the washroom (still not ideal).

By tomorrow, we will have the additional items and supplies needed to make the set up very close to that of the hospital room, but with all the comforts of home, the big-screen TV, the view of our backyard and wildlife, the comforting sounds of our house, and the absence of the white noise sounds of the hospital, the announcements of various emergency codes through the PA system, and the audible reminders of being amongst very seriously sick individuals.

The OT also gave us good suggestions about slowing down, avoiding euphoria and expenditures of energy which would only impede getting used to the new accommodations. She also recommended renegotiating the number and frequency of visits for at least a few days, knowing from experience just how energy draining those visits can become when piled up one upon the other.

Email and visits continued. But I tried, as best I could, to simply bask in the positive energy of our home.

I don't know what the days ahead will look like. Clearly, the deep vein thrombosis remains a serious threat. The edema in my legs continues unabated, preventing mobility while throwing my weight into the stratosphere. And, of course, the progress of the underlying disease itself makes the end game a frightening thing to anticipate.

Even though this decision feels right, and even though being home is so rewarding, I know that it is only possible because of our initial commitment to the treatment plan. There is no way I could be here enjoying the comforts of home without having given chemotherapy a real chance. There would have been too many "what if" questions and a sense that I had lacked courage to face the rigours of treatment.

Now, instead there is peace. We will move ahead slowly, enjoying our time together, squeezing every bit of happiness and fulfillment out of the opportunities presented us, relaxing in the natural joys and awe that are our biological, evolutionary heritage, and realizing that although everything changes there is still freedom in the way we face the future.