Writing here at the tail end of 2011, and hoping that this time next year this illness and time of treatment will be long behind us. We had a delay in posting for a number of reasons, not the least of which is that the new laptop I got to replace my old, dying one up and died as a result of an infection. It has made its own visit to the hospital, and will hopefully be home soon. You can send flowers c/o the Geek Squad.
Note to daughters: Next time I WILL get a Mac.
We had wonderful holidays with our great children and their delightful partners. We do a "Secret Santa" system among the 6 of us that has proven to be quite fun. That was on the 21st, as Amanda and Alejandro headed off to Jamaica on the 22nd. Jessie, Matt, and Cleveland came out for Christmas Eve and Day, and we had a sweet holiday together.
Peter felt pretty OK for those two days, and hasn't suffered many side effects beyond what is expected...and those are intermittent. He has managed to keep exercising, which is strongly encouraged by the docs (though today they told him to do shorter workouts). Going to radiation has become somewhat routine, with friends like Joe Coates and Allison Snyder driving occasionally.
Here are a few pictures from Christmas:
Hike in the woods
Jessie's annual tree climb
Peter and friends
Chemo #2 of 5
This is Thursday, and we're in Clinic 2A, which is the chemo treatment room. It is busier than last week, and each chemo station sounds an alarm every time anyone does anything, which gets annoying. Note to self, next time bring earbuds or plugs. The nurse just hooked up the actual chemo drugs, and I noticed that she put on heavy armor to do so...a protective gown and mask. Yikes.
Jessie came for part of the chemo time today, and that was great. She showed up just as I heard Peter say, "Netflix won't load?" and she solved the iPad problem since I am not familiar with this new toy (though it is easy to figure out so far). She stayed on for radiation and got to meet Dr. Willett. Having both daughters here and now familiar with our routines and where things are is comforting.
Peter is happily plugging away on his iPad, though the Benadryl they give to counter any reaction to the drugs is kicking in, and he's getting sleepy. In a few minutes I'll make the trek to Duke North and bring some food back from the cafeteria. A lot of what we talked to the doctors about today was Peter's lack of appetite.
Duke got slammed in the news because the Physicians Committee for Responsible Medicine (PCRM), a Washington-based nonprofit that promotes preventive medicine, has ranked Duke Hospital as one of the “five worst hospital food environments” in the nation.. There are not many good options besides a big salad bar (with which Duke defended its options) and sushi...and that's in North where the "real" cafeteria is. There is a station with "Southern cooking," and the rest of the offerings are fried, fatty, or packaged--chips, sodas, Krispy Kreme, pretzels...you get the picture. There is not one single organic (or local) option, and vegans are limited to the salad bar.
In South it is almost all fast food chains, and in both places the hours are quite odd so that there there are times when there are almost no options (except Starbucks in North). Appointment hours are hard to figure out, so a couple of times we've needed to eat when no real food was available. Sodas and vending machines are abundantly present, even in the treatment areas. I've started packing food in.
Some choices in the main cafeteria:
The one healthy choice
...and so on...
For a number of years I've read a lot about health and nutrition, and have ratcheted that up since Peter got sick. Anticancer and The China Study cite well-done studies published in "prestigious" journals that show that diet can play a huge role in both preventing and treating cancer. In fact, PCRM says, “Research shows that high-fat, meaty diets are linked to obesity, diabetes, heart disease, and some cancers.”
And yet, regarding Peter's need to gain weight, what we hear at Duke is "Eat what you want." We have found that it is possible to pair high calorie foods with good nutrition. I am trying to use "healthy" plant-based fats (though I still worry about the fats). Today we brainstormed with the docs about some appetite-enhancing options.
These waiting areas could be little classrooms to improve the health and well-being of the hundreds of people who pass through here...people who have bumped up against their own mortality and are more likely than most to be motivated to make positive changes. And Duke could have a tremendously positive impact on the local economy if they bought just a portion of their food from area farmers. This is the place for education, not vending machines.
Most other things at Duke, however, have proven to be quite pleasant. It is easy to get in and out of here, we seldom wait long at all, and people couldn't be nicer or more supportive. The doctors are attentive...last week they CALLED PETER to see how he was doing. You feel like they really know you, and you get to know them. Hospital-wide, you can't even look lost for a second but someone offers to help you out. I envision a big party at the farm for all these people when this is over!
Today, so far, is a good day with Peter feeling healthy and eating well. He is quite tired of talking about his appetite and food, and gets sometimes gets testy when any of us push food on him. He feels like eating would make him sick. But he lost 5 of the 8 lbs he's gained, and that can't keep happening. The doctors keep telling him to eat as least 6 small meals, and to force it if he has to.
On a happier note, Peter got excited when he learned that today's chemo nurse was named Gail Funk, and even more surprised that she didn't know what funk music was. At the time he was listening to a boxed set of music called "The Funk Box" on his new iPad and he let her listen when "Brick House" by the Commodores came on. She knew the song, but not that it was funk, and said she liked Z Z Top and Credence Clearwater Revival. After listening to the music of Sam Cook and the Soul Stirrers, Peter had a (Benadryl) dream whereby he produced a recording session of Stella and gospel singer Jennifer Evans singing "Be With Me Jesus." [Can you tell Peter dictated most of that paragraph?]
We try to hold onto the better days, squeeze all the gusto out of them, and then hunker down for the nausea, the fatigue, and those other side effects we just get tired of talking about. Fortunately, we've had far more days worth squeezing.
Love to all!