Its been a week since I started to feel better. 10 days since my last injection. The Sunday after my last injection felt like any normal Sunday, but Monday I woke up and felt amazingly better. My joints didn’t ache. I didn’t have to take Tylenol and wait for 30 minutes before I could get out of bed. And I felt like I had a lot more energy.
Unfortunately, the next four days was the second hottest heat wave on record in portland, tying the 4 days above 100 in 1981. It peaked at 107. Considering that my side effects are mostly heat triggered, it was a brutal four days. I really don’t know if I could have made it through it if it happened a week earlier. O and I retreated from the house we were staying in, to my parents house that has AC.
The daily improvement is subtle and hard to gauge. I know I’m getting better, but I also know that I am not well yet. My eyes healed first: no more flaky skin all over my eyelids. The open wound on my ankle immediately started to form a proper scab after 2 months(?) of being an oozing semi-open wound. My mouth has healed enough that I can brush my teeth with my finger, and tomorrow I am going to get a new toothbrush and try to brush them for real (I haven’t done that for 6 months!!! ICK, right?). My dysesthesia is down a little bit, but b/c i have eased off on the Atarax, and it is so hot, it is somewhat hard to tell how much better it is getting. I am much more mentally clear. My dad said it was like I came out of a fog. The heat here is hard, and it will probably be worse when I get back to NYC at least until mid september.
Last night my parents had a bunch of family friends over for dessert and drinks. It was a chance for them to see me and talk to me, and for me to thank them for supporting my parents over the last 18 months; most of them hadn’t seen me for a while: at least since I was in Portland last summer for my initial high-dose treatment.
It was Os first time meeting my parents friends. If you grow up far away from your extended family, your family friends (aka your parents friends) become like family. They have a major role in shaping who you are. They provide models for how to live your life.
So as I said, it was Os first time meeting them, and afterward she remarked how great they were. How caring. And interesting. I said that everyone who came had an open heart.
I made a toast to my Parents, O, S, PD, and all of the people who helped support my parents over this long haul. It was long, and full of honest, clear spoken, sentimental truths.
I told them about getting a flat tire two days ago in a borrowed car. Once I realized there was a problem, I panicked, then calmed myself. Before I knew it the guy who lived in the house we were stopped in front of was coming down his stairs to help. His name was Jared, he was 230, mostly muscle, and wore a National Jiu Jitsu championship t-shirt. He (with a little bit of help from me) used all his strength with his arms, a hammer, and eventually his whole weight (while I held the tire iron onto the nut) to get the nuts off. The car is a ’89 Land Cruiser, when they still were real safari vehicles, and not suburban tanks. It was a beast. it took 40 minutes to change the tire, and by the end his body was literally dripping with sweat. I profusely thanked Jared (we are going to drop off a bottle of wine and some cheese and crackers tmrw).
I told him that this would never have happened in NYC. You have a crisis: its your problem. No one else stops to help. The only space where people really seem to help each other is on the bicycle: if any cyclist is off their bike and still in the road in Prospect Park every cyclist that comes by stops to make sure you are okay. Even the meanest rider in the park, whom PD and I dubbed “The Bully” (who laughed at me when I rode around with my shirt pulled up to cool my belly) stopped when I had a dysesthesia attack on my bike. My bike was on the ground, I was clutching my ribs in a half bent position, shaking a little bit. Trying to calm myself so I could ride up the last hill and go home. He and his gang stopped to see if I was okay. I clumsily tried to explain that I was in chemo and that i get these really painful pins and needles. That it was kind of like a little seizure, but that it would pass. He said that he recently lost his father to cancer, and he expressed sympathy and understanding about how difficult the fight is. After reassuring them that I would be okay, they rode off. That is the only time a stranger has stopped to see if I was okay, or to help.
The other thing I said was something PD’s father SD said to me sometime in between my surgeries and my IFN year started. He said that he has been repeatedly told by friends who had been diagnosed that their lives took on more meaning after their diagnosis. I told SD that I had just come to a similar realization: that knowing that I could die shocked me into realizing that every moment is precious (what an awful cliche…) and that I really should be doing what I really want to do.
