The improvement in my health was reinforced dramatically by the hike I took from the top of Mt. Tamalpais to Stinson Beach in Marin with Erin Rooney and Kaki. Approximately 6 miles. Breathtaking views.
A note to anyome who lives in the area:
There’s a bed and breakfast called Redwood Haus at the bottom of the trail. They provide a taxi service back up to the top for $20. Even the non-cancer stricken of our group though this was a great idea, since their calves were burning as well.
I’ve noticed a strange sensation when I eat meat, especially fish. It feels like the flesh is adhering to my bones, building muscle. My muscles have all come back at least 25%. Two weeks ago I had no deltoids, pectorals, forearms, or biceps. These all have now made modest reappearances, like Spring’s first buds, eager to bloom.
I’m no longer getting winded on stairs and actually feel 100% healthy. Which leads me to a very disturbing paradox – the concept of having my organs rearranged to work better seems counterproductive to the better health I’m feeling now.
This week has been completely and totally normal. This continued (and admittedly irrational) doubt about the continued presence of cancer due to my good health was fortified throughout the week as I continued to eat three meals a day, including various kinds of meat. Adding to my sense of well-being and this state of feeling cancer-free are my utterly normal-looking stools, dookies, numbers 2’s. Trying not to say poop here.
I even ended up working a bit this week.
Went to see Dave Chapelle at The Punch Line With Mike O’Reilly and his French designer Gerard Pronko. Although Dave is still hilarious, I was reminded that some of the best times I have laughing are with Mike and Gerard, whom I look forward to recuperating with in Hawaii after the surgery.
Went out for a sushi dinner. It’s the first time I’ve eaten raw fish since this whole thing started. My diet for the past year has somewhat mirrored Kaki’s, that is to say a strict vegetarian diet that includes goat cheese and eggs, but i never missed meat or craved it. But since dropping from 168 lbs. to 131, every time I am around a flesh-based food product, I turn into an eating machine.
That night definitely triggered my sushi craze. I’ve had it four more times since then, with increasing volumes of fish each time. People are noticing my beautiful, radiant glow. I’m hoping this is not from the Fukushima power plant in Japan. Gotta check where that fish is sourced from.
Third chemo
Went smoothly. I felt satisfied that during this chemo session I was able to call the company that makes the chemo drip machines and ask them how to turn down the piercing beep that alerts the nurses when the bag of chemicals is empty. Started a small revolt among the other chemo patients in the chemo lounge who agreed that the beeping and the alcohol wipes were the worst part of chemo.
I must be feeling better because I was verbally assaulted by a nurse who demanded I not touch the machine (which I hadn’t). I explained to her that I was just trying to figure out how to make our time in chemo more audibly pleasant for everybody. She seemed unmoved.
Then it was off home where I began my second round of internal medicine (i.e. I finally started smoking the right weed).
As I’ve mentioned before, up until this point I had not been eating much and have continued to lose weight. But almost as if I’d been given a prescription by Dr. Houdini, this situation has magically transformed. The weed, an indica strain, wiped out my nausea and gave me an extreme case of the munchies. This marked the beginning of my journey back to three meals a day.
It was so effective that on Friday night I found myself at Bloom’s Bar on Potrero Hill at my friend Erin Rooney’s birthday party, where – though I was abstaining, obviously – I was able to revel with lots of drunken, empathetic friends.
I continued to eat regularly for the rest of the weekend, occasionally smoking a little weed to trigger my appetite. By Monday, the weed became unnecessary and I was back on a normal eating schedule for the first time in I don’t remember how long.
One of the benefits of this regimen is that now I don’t need to take any more nausea meds, which makes chemo and my morning cup of chai my only two medicinal supplements.
Felt like I was at 95%. Huge difference from last Thursday. I can feel the next few days before my next chemo are going to be good. My body’s telling me I’ll be feeling fine.
Oversaw the delivery of the cabinets for the kitchen remodel I’ve been working on for my dear, sweet clients Jennifer and Craig. Jennifer is the mother of a two-year old and newborn twins as of December. She thought it would be a good idea to stay with her parents in Minnesota while I remodeled their kitchen. This started in the middle of December. Fortunately I was done with all the heavy construction when the pain peaked. I actually got the call that they thought I had pancreatitis while I was sweeping up the last of the construction debris.
Fortunately, since the hospital stay and starting chemo, I’ve only had to oversee painters, tilers, and sheetrock workers, and not actually do any labor myself. I say fortunately because I’ve lost about 60% of my muscle mass. So on Monday I found myself driving a truckload of cabinetry over to the jobsite with my friend Tim and my brother Jimmy. They did the lifting and I told them where to put them inside.
Which brings me to my next point. I’ve added a “Gratitude” button to try in some small way to express my thanks to everyone who’s been there for me, reached out to me, and supported me through this tough time. The list is incomplete and growing. Please take a minute to check it out.
Third chemo on Thursday.
Had 2nd chemo Thursday. Was out and about on Friday and felt okay, strangely. Went out to dinner on Saturday night and ate a huge meal. Felt fine. But after that I’d been feeling progressively worse each day. Nauseous and unable to eat much.
I think I’ve eaten about 3,000 calories this whole week, of which I think 1,500 was that meal I had at Sunflower Saturday night – a delicious Vietnamese vegetable curry. (Note to self: don’t accept free Vietnamese iced tea after 9 pm. I was up literally all night. That was the most caffeine I have consumed in two months. I think the Vietnamese call it liquid meth.)
I burned off those 1,500 calories at the Alameda Flea Market on Sunday. For those of you who don’t know, the Alameda Flea is held the first Sunday of every month on the grounds of the old Alameda Naval Air Station. It covers a full two-and-a-half acres, and everything sold there must be at least 25 years old. It is a treasure trove of wonders and delights, and going there is one of my favorite things to do. This is evident in the household full of objects I have purchased there, from 100-year old lithograph print of a church (a church that I later accidentally stumbled upon in Paris with Barbara Caldwell) and the art deco pewter ashtray nymph on my mantelpiece to the lucite-encased ticket to the 1892 Chicago World’s Fair, a gift from my son Dillon. The most bizarre thing I’ve bought there is a set of half-melted copper and latex antique baby dollhead molds. They have been banished to a box somewhere due to the horror and dismay they cause anyone who looks upon them.
Strangely, this was the first day I went to the Alameda Flea and didn’t buy something. Kaki and I were looking for a desk, and although we found one we loved, it was being wheeled out the gate by the person who had bought it. I guess the reason I didn’t buy anything is I was so focused on looking for the desk, not because I haven’t been purchasing things. The future is mine and I shall not sway from buying something because of a fear that tomorrow may not come.
This belief was borne out by the beautiful art deco desk Kaki and I found on craigslist (that’s ‘classifieds’ to you 20th century folks) two days later. And it was less expensive than the one art the market.
So I started feeling worse late Sunday, and it got worse with each passing day. It peaked (or bottomed out) on Thursday. No appetite and lots of nausea. I feel like I’m still losing weight.
A dear friend who shall remain nameless (whose name starts with an ‘M’ and ends with an ‘E’ and sounds like something you sing into) brought me some traditional medicinal herbs to help me deal with the nausea and lack of appetite. Additional note to self: Like Vietnamese iced tea, this should not be imbibed after 9 pm. I found myself self-exiled to the couch, staring at the ceiling and trying to ignore the sounds of someone breaking into my house. Turns out it was the wind and my imagination jimmying the lock.
Apparently this was due to the strain of herb, and I have been assured by another dear friend in Mendocino County (whose name starts with an ‘S’ and ends with an ‘E’ and rhymes with the part of the shirt that covers your arm) that the next strain will do the trick without causing Vietnamese Tea Syndrome. It’s great having so many friends so well versed in the traditional Native American healing arts.
Starting on Friday, I’ve been feeling incrementally better each day.
Have made tremendous strides. Feeling great. The chemo seem to have shrunk the tumor already. I’ve got a full appetite and can eat just about anything. I don’t even need to take the enzymes. I’m having minimal side effects from the chemo and have full energy. The only thing out of the ordinary is some weird tingling in my feet and fingertips. I feel so good I stopped taking painkillers. And I was finally able to deliver Kaki’s bed, which I made for her at Christmas.
The only negative experience so far has been withdrawal from going off the painkillers so quickly. Consulted with the doctors and we came up with a schedule to wean me off them more gradually.
Felt good enough to go to the Sing-a-Long Wizard of Oz at the Castro Theater with my ma, my brother, Kaki and Calum.
But first, I have to have an access “port” installed in my chest. I will be essentially plug-in-able for the duration of the chemo. That’s at 10 am. Chemo starts at 1 pm. 5 hours of chemo at the hospital followed by 48 hours with a pump at home.
Slept for three days afterwards. Totally wiped out.
My cousin Stephen arrives from Washington, stopping to spend time with me, my mother and brother on his way back home to Korea. Just in time for St. Patrick’s Day! Great to have him. Hoping he brings his red-haired leprechaun luck.
Managing pain. Worst managerial job ever. Not able to eat much. Been given a schedule of painkiller cocktails, and a scrip for digestive enzymes, which I will need in order to eat, since the tumor seems to be preventing my pancreas from producing them. At one point taking 160 mg of Oxycodone a day. We call it the Rush Limbaugh. I have no idea how he did his radio show on this stuff. Anxious for chemo to start.
I wish I could get over-the-counter chemo at Walgreen’s. Alas, it’s all Snuggies and Sham-Wow’s.