Tuesday, August 1, Day 27 (36) .
Halleluiah! I'm online! A tech came into my room this afternoon and said "Congratulations, you have DSL!". Good timing, because it's only now that I feel strong enough to sit, focus, read and type, for a few minutes at a time, at least. There is still a long way to go but I am so thankful to have made it this far into the transplant. It's been a rough ride, but I'm SLOWLY getting better with each passing day.
Picture a boundary of a 15-foot radius surrounding your humble bed. Now imagine not going beyond that boundary for almost an entire summer. Yet, within that circle you experience one of the most remote and arduous of journeys, with 90% of the time not extending beyond center. It's been 36 days since the heavy doors of this hushed, sterile ward sealed off the aromatic chatter and pungent textures of the outside world. And each day has been draped with uncertainty, with Hope clinging to the yards with long arms.
The effulgence of life is so real here because death lingers so close. It would be too easy to describe the experience as "surreal", but the world inside the heavy doors does bear closer to a disjointed dream or stuff of placid nightmares. Except for the one hour when you are "unhooked" in order to take a shower, your heart is literally tethered to a pair of six (or seven?) foot long vertical poles on rolling casters, via catheter tubing from your chest. This is also known as the "IV tree", whence hangs a buffet of chemotherapy, narcotics, nutrient support, antibiotics, antifungals, antivirals, and antirejection drugs.
Nurses and long-term patients share a special dark humor with each other to help cope with the daily activity of holding on. One of the running jokes is that you are "married" to the "IV Tree" for your entire stay. As a result, some people have taken to christening their trees with special names. Men, especially those under 40, call their trees the "mother-in-law" or simply "in-law". Women tend to be more whimsical, with "Antonio Banderas" or "George Clooney" being the popular guys to have by your side 24/7 while facing each day.
And with each day it is the tiny goals, the littlest of accomplishments that bring applause and tears: Going 24 hours without needing narcotic pain medication; Feeling well enough to raise your arms above your head; Regaining the ability to swallow food. Less than a week ago, I tested my strength and stamina by trying to stand in the shower. When I was finally able to stand for the entire five minutes, the nurse clapped and cheered and then sheepishly pumped her light-blue, non-latex glove in the air.
I love showering. Though the private bathroom is just five feet from my bed, the shower is only time I can "escape" from the bland heavy air of the hospital ward. The faucets turn, the hot water flows down, I close my eyes and suddenly I am covered in Plumeria lather in an outdoor shower on Maui; I am kayaking sea caves in the Meditterean; I am dancing in Virginia rain.
Four days ago, I was finally allowed to leave my room, covered in mask, gloves and isolation gown. I took a short walk in the morning and starting yesterday, I take another short walk in the evening. There are many stories in this hallway. Some tragic, some inspiring. There was the 3-year old girl and her mother who waved to me through the window. A year and a half ago the little toddler was fighting for her life . Three times her mother was told that her little girl would not make it through the night. Now the little girl smiles with cherubic cheeks, healthy.
There is also Rodrigo, who had a transplant 28 years ago and now works as a BMT nurse to help others make it through.
Okay, there goes my energy... need to doze off for now. 27 Days Down. 73 more days to go before I can leave the hospital.
I can't believe it's August. Sending much much much love.