Home At Last

Anyone that comes home from an extended hospital that doesn't think that just being home is the best thing ever is critically ill and should return to the hospital as soon as possible. Just to be able to walk outside, to see family and pets, to sleep in your own bed, and be able to sleep without being awakened every four hours makes you feel human again.

That said, it is so much harder to focus on a routine. In the hospital, you kept a routine to avoid boredom. Once you're at home, there are so many things to distract you, you have to set reminders to be sure you aren't skipping the things you need to do to stay healthy physically, mentally and emotionally.

So far, I have failed miserably. But if I need motivation, all I need to do is remember what it took to get to this point. To quote Fleetwood Mac's 1977 hit, Never Going Back Again, "Been down one time. Been down two times. Never going back again."

Outpatient Care

Outpatient Care allows you to stay at home (see above). The $50 copay per weekly clinic visit is so much less expensive than the cost per night for Inpatient Care. You can make appointments that work with your schedule.

Obviously, if were as sick as I was during my first hospital stay or undergoing a complex procedure, you would be glad you had 24 hour a day resources at your disposal. There is nothing to compare to care you receive from a nurse, especially a critical care or oncology nurse.

Pity Parties or The Tracks of My Tears (Smokey Robinson, 1965)

The fight against any cancer has its highs and lows. This is especially true of AML + Philadelphia chromosome, as much of the treatment is exploratory. It requires research and creativity on the part of the Oncologist, and patience on the part of the patient. My doctor gets an A+. I'm pretty much a B- at best. To remind myself that the lows don't last forever, I have decided to track my Pity Parties.

1. August 25: first diagnosis of Leukemia. Really, this was more shock than pity. Other than it being a form of cancer, we didn't know much about it. Being told the next day I could be dead in two weeks if I didn't start treatment immediately was where the party began.

2. September 2: bone marrow biopsy #1 confirms I have AML + Philadelphia chromosome variant. We are told it is the most rare of all leukemias and has the lowest recovery rate. Doctor tells us only cure is a stem cell transplant, then tells me I am past the age to receive one. And the party grew as we shared the news with family and close friends.

3. September 9: learn that I have contracted pneumonia, the flu and the common cold while in the hospital receiving my first round of chemo. Pneumonia turns into double pneumonia. Chemo treatment is stopped to focus on what is now double pneumonia. They stuck a hose in my side to drain fluid gathering around my heart and lungs. I was on oxygen 24 hours a day and just a step away from a respirator. I'd be lying if I didn't admit to a little, "Why me?", more than once over the next 24 days. The refrain from Fleetwood Mac's 1975 hit, Landslide, seemed to fit the situation.

4. October 5: learn we have to repeat first treatment, all 28 days of it. We return to the hospital depressed and deeply disappointed. Whitesnake's 1987 hit, Here I Go Again, seemed appropriate.

5. December 31: nearly three weeks after layering the second new drug on top of the first, there is little to no movement in my numbers. A unit of blood does not bring the boost in energy we had expected. A crisis in confidence begins to creep into my thoughts. Wasted Time from the iconic 1976 Hotel California by the Eagles keeps playing in my head.

6. January 12: Five weeks into the second drug, and my numbers remain essentially unchanged. Patience, faith, stay the course become more challenging with each week's lab results. Running On Empty, Jackson Browne's 1977 hit comes to mind.