November 12th and 13th, 2008: As we walked out of UCSF hospital on Tuesday evening, I realized that I had been infusing chemicals internally, but also I’d been on the 11th floor with no fresh air for five days. Since the 11th floor specializes in bone marrow transplant patients, the walls and windows are sealed to the max. No one goes over and opens a window for a bit of fresh air. During that time on 11, I’d been marinating in a chemical brew of artificial air and other accumulated hospital smells. I didn’t notice this until I put my clothes on to go home; they were rank with pharmaceuticals. “They’ll air out,” I promised myself. Then, stepping through the hospital doors into fresh air, I felt born back into the natural world. As Parnassus St. rises up to the hospital, the wind carries ocean saltiness and adds eucalyptus and cypress moisturized by fog. Now that’s a smell worth smelling.
Arriving home was not a joy. I was so wiped that I went directly to bed. My organized self was operating with great lethargy, but at some point, I took dinner out of the refrigerator. Hours passed. Around two thirty in the morning, I decided that regardless of my nausea, I had to eat. So I cooked myself dinner and ate about a third of the contents. In the past two days I usually had a few minutes between a drink of water and upchucking same. Not this time. Clearly, it was going to be a no dinner night. This pattern of going to bed exhausted, staying there, nauseated if I was awake and drifty if I slept defined my Wednesday. However, in the morning, I found a call from Sista Monica on my answering machine. Her voice was clear and strong. She welcomed me home and said, “I see you well.” Monica’s speech has a very physical embrace, and I felt held and comforted. She spoke directly to my heart. It’s a phrase that I hear but on Wednesday morning it happened to me; my heart was directly spoken to. Mid-day, the good Gaetano brought over some groceries that I had asked for. Reading the newspaper was a great cognitive effort so I mostly scanned headlines. If there was an interesting article, I couldn’t read my way through to the end.
As I lay in bed at home I realized that my nausea from smells from the day before had returned. With the chemo still in me, I gave off a repugnant aroma; not a stench mind you, but noticeable and unpleasant. Tripping through my olfactory memory, I realized how deeply I’ve settled into my body’s smells. I enjoy them and am happy to produce them. They are a layer of me. There’s my physical body, and my etheric wrappings and my smells and my clothes layer all mixing together in harmony. From the astonishing sweetness of fresh born baby smells through the strong rank of sweating with other guys during hard physical labor or sex or dancing, I’ve always liked the information of smells. However, smells aren’t a fetish with me. I’ve never collected used T-shirts or underpants; just not my thing. But on Wednesday, my memories of how body scents had sustained like an always present and welcome aura was thrown off by being offended. These smells weren’t my known aromas. I smelled like chemo. This was part of my contract with welcoming Doxo and Ifosamide, inviting them into my body. In retrospect, extreme reactions to scents is probably just a symptom of nausea. But it dominated my day and night.
Finally, by Thursday morning, I was nauseated of being nauseated. Rest wasn’t refreshing me. I called the oncology nurse and she immediately asked me, “Haven’t you been taking your anti-nausea meds?” “And what would those be?” I responded. “Didn’t the pharmacist give you anti-nausea medication before you left the hospital?” she wondered. “What pharmacist,” I replied. So, serious disconnect. Prior to discharge I had been given terrific information about what to do for inflammation of my chest port, temperature fluxuations, headache, etc. The missing piece of information, including a suite of meds was how to manage nausea.
The nurse was very aggressive. She had me back in the infusion center at 1600 Divisadero within the hour of our call, and by two in the afternoon, I was being treated with anti-nausea meds and a big water bag for hydration. It worked! As I drifted through the afternoon, my struggle to get better subsided. I simply was better. Within a few hours, I was home, sitting down to my first dinner in several days, washed down with clear, cool, luscious water. Pacing myself, I used the rest of my new energy to change my bed and put on fresh sheets and pillowcases.
I don’t want to raise undue hopes prematurely, but I will say that during the days of my misery, a strange feature was that my tumor which can be easily felt in my pelvis seemed to have significantly shrunk. Still there and still sizeable, but the opulence of its curve seemed reduced. I asked the oncology nurse about this. “Well, that would be wonderful. It might be a short term effect of the steroids which are mixed in with the chemo. Steroids reduce inflammation. But we’re giving you these drugs to shrink the tumor. Let’s hope it’s started immediately!” So, I offer it to all of you that the tumor feels smaller to me.