Healing agents kick cancer’s butt; Pascale and Rick's wedding
Situation Report
It's almost a month since the last dispatch from the cancer trenches. Quite a month! I am in week 5 of chemotherapy, actually sitting in a comfortable recliner in an infusion room at Dr. Roger Shiffman's oncology office, receiving healing juices from two pumps connected to my portocath as I type. There is no pain whatsoever while this is happening.
At the end of week 3, Roger took some readings on my blood. He was ecstatic with the lab results. We are convinced that the healing agents are kicking the cancer's butt! Every number on the lab report moved in the right direction. There is an approximate measure of cancer presence called CEA (carcinoembryonic antigen) that went from 2698 to 1078 in three weeks. I love that steep descent, but it is still a long way from a healthy CEA, which should be under 3. CEA is not a perfect measure, but I take great comfort from the early results and, especially, from Roger's enthusiastic reaction to them. I have tremendous faith in and admiration for the leader of my medical team.
As for side effects, there has been only one, a rash caused by Erbitux, one of the healing agents in Roger's magic cocktail. (The other agents, if you are interested, are Oxaliplatin, Leucovorin, and 5Fu.) The rash is on my face, chest and back. The face was very uncomfortable for a about two weeks. It felt and looked as if I had fallen asleep in the Hawaii sun for hours on end. I tried many creams and salves. The best was when Pascale cut open a fresh aloe leaf and lovingly smeared my face with the wet, gooey gel it exudes. It was as nice as a dip in an isolated Sierra lake on a summer backpacking trip. I have not attempted to shave since the skin is so sensitive. Roger gave me last week off from Erbitux and he reduced it by 25% from today's chemo cocktail, so the pain has gone away. Besides the rash, the only other thing I have had to whine about is abdominal cramps. They are related to constipation which was caused by the colon tumor and the stint inserted by the gastroenterologist to suppress it. For a long while the cramps were quite painful, calling for morphine a couple of times. Thankfully, the log-jam was broken last weekend, regularity is here, and that is a great mood-enhancer. No cramps lately! And my appetite is hearty. Keep fingers crossed for this to last.
At this point I am beyond the embarrassment of recognizing how important the regularity of digestive functioning is to my overall well-being. I beg for forgiveness from any of my elders with whom I may have been a little impatient when they referred to such indelicacies in the past. Jerry and Nancy Brown pointed out the perfect appropriateness of the dare in T.S. Eliot's The Love Song of J.. Alfred Prufrock, who says:
"I grow old....I grow old.......
I shall wear the bottoms of my trousers rolled.
Shall I part my hair behind? Do I dare to eat a peach?
I shall wear white flannel trousers, and walk upon the beach."
With only bellyaches and sunburn to whine about while engaged in mortal combat with cancer, I am pretty darn lucky. Of course, that doesn't totally stop me from whining, and Pascale has been patient with me beyond belief. Every toss and turn or whimper and moan keeps her up at night. I worry that she is not getting enough sleep. I kept her up a few nights last month with a 9-hour and a 14-hour bout of hiccups. Acupuncture did not work, but the mix of Reglan and Ativan finally did the trick.
One of the most difficult parts of all this is talking to my parents. My older brothers Andy and Bobby and I agree not to tell them about my illness. Our mother (85) sustained a severe stroke in November 2003, which smote her mind from totally sharp to incapable of differentiating the here-and-now from random thoughts that cross her mind. Our dad's mind is fading too at 88, but it is going at a slower rate. They are very well cared for round the clock in the home they moved into as bride and groom, and they're as happy as we could hope for under the circumstances. I call them often, though I hate lying through my teeth about my health to the people who have known me the longest and love me the most.
Wedded Bliss
The number one highlight of the month is that Pascale and I got married on May 3rd. We did it on Del Monte Beach, near our house. Rosanna Wilson-Farrow, was visiting from Mendocino for a long weekend, doing lots of masterful cooking to help me regain the 15 pounds I have lost. Rosanna is the first very close friend Pascale made after moving from France at the age of almost 19. Pascale and I have known for a long time that we wanted to get married and had put if off for a variety of practical reasons. But the cancer battle brings us even closer and makes us even more deeply committed, so we decided to delay no longer.
Here in Monterey, the scenery and ambiance are so beautiful that many lovers get the spontaneous urge to marry. So there is a cottage industry of nonreligious "ministers," who are available at the drop of a hat to perform the ceremony. We called Colette at 10:00 a.m. and she agreed to meet us at the beach at 2:00. For a little extra, she said she would bring all the documents and save us the trip to the Salinas courthouse to get the marriage license.
Pascale had Rosanna as a witness, so I decided I needed one too. I called my good friend and colleague Rob Dell at noon and asked what he was doing at 2. He said he was meeting with a thesis student. I know, and Rob knows I know, what a conscientious professor he is, how he would never miss an appointment with a student. But I asked him if he could see the student another time, and he said "yes" without hesitating. I said, "great, then please come to the house at 1:45 for a secret mission." My buddy said, "sure" and asked no questions. When Rob arrived, he found me in my suit (a bit baggy with the weight loss) and he saw Pascale and Rosanna putting the finishing touches on their beautiful outfits. There were corsage and boutonnière to be pinned. The amazing thing is that Rob was not surprised. He said that the unprecedented request to break an appointment with a student and the happiness in my voice enabled him to guess exactly what we were doing. Rob's smart that way, actually in lots of ways. I am truly blessed with so many great friends. I am sure that several others would have been just as willing and able to be my witness.
So the giddy wedding party of four went down to the beach. Colette was good to her word and met us there. She read a traditional script, we exchanged rings, recited vows, said "I do's," and we all did a lot of laughing and hugging. For a split second, I thought I was in a play, because Colette was saying these beautiful words even though she doesn't know us. That feeling quickly evaporated as I gazed at Pascale's radiant smile, and felt Rob and Rosanna's loving energy.
One funny thing: looking at the pictures later, I noticed that Colette never loosened the grip on her cell phone throughout the ceremony. Hey, you never know when the next couple will get the urge and she's got lots of competition. Actually, Collette was competent and warm-hearted and, fortunately, her phone didn't ring. She took good pictures of the four of us (Rosanna took most of the pictures) and gave us a great laugh when she made us swear we're over 18 years old.
On the way back from the wedding site, we ran into two young surfers. I called out to them, "We're just married!" and they had the audacity to ignore me. Pascale is so beautiful and charismatic that she is impossible to ignore. She said, "did you hear what my husband said?" and soon the boys were sweetly offering congratulations and posing for pictures with us.
Rosanna wrote a beautiful note when she returned to Mendocino: "I am still high from being there with you on your magical, amazing, spontaneous wedding day. It was such an honor -- thank you for the wild and wonderful ride! The way it all unfolded was like a dream. Although I tend to be a skeptic about divine intervention in our little human lives, God or the Universe really seemed to pay close attention that day. Perhaps there are favored moments chosen to help us create perfection down here. It was as if some force took over, rolled out an invisible carpet for us to ride, and guided us minute by minute. Everything unfolded in the most creative, delightful way. I'm not sure how it all happened so smoothly. No amount of planning could have made it any better or more beautiful than it turned out. The experience was a high point in my life."
Rob enjoyed it too. He is an operations researcher like me, so you can't expect poetry to flow out of us like Rosanna, but Rob had feelings much like hers. The wedding was a wonderful distraction from cancer, and a great affirmation to remind the cancer that we are going to beat the bloody daylights out of it.
Click here for pictures of our wedding.
I Get by with a Lotta Help from My Friends
Another wonderful affirmation has been the generosity of friends who bring food and, most importantly, take times out of their busy lives to call, write or visit. My three daughters have been fantastic about paying attention to me. My very kind ex-wife Diana brings chicken soup regularly. It is my grandmother's recipe, to which she has miraculously added even more good taste. On days when my appetite was totally suppressed by abdominal cramps, it was a godsend. I can imagine my grandmother smiling down from heaven as I slurped it up. Other dear friends bring wonderful food too. Roberto Szechtman brought me delicious empinadas, the traditional dish that Argentines bring to the sick. Wilson Price, who is here in Monterey as a visiting professor from Quebec City, and his lovely wife Hélène have been so attentive, as have been the wonderful Nancys. Nancy Dell got a stack of cookbooks for cancer patients from the library and assigned me the task of checking off the most appealing recipes. She regularly drops off goodies. Another great Nancy, Pascale's dear friend in Ojai, sends care packages and calls regularly, as do Pascale's sweet daughter Nina and so many friends from Pascale's pre-Monterey life.
Nancy and Jerry Brown cooked an amazing barbeque as part of our festival honoring Al Washburn's retirement, and sent me home with tasty (and fattening) leftovers. Nancy even brought a delicious lunch today to Roger's office that I enjoyed during chemo. The WashburnFest was a huge success for Al, his family, his research colleagues who flew in from far away, and especially for the OR department, which is so proud of his accomplishments. I am very pleased that I was able to lend a hand in organizing the festival before I got sick.
I hope I do not forget to mention others who have brought me nourishing meals. Pascale plays on the Naval Postgraduate School tennis team, and her teammates volunteered to bring dishes over while Pascale is traveling. She is in New York now, attending a workshop essential for her education as a therapist. Had she not gone, it would have significantly set her back in the third year of her four-year training. It was very hard for her to leave, but the Nancys and the tennis team gave her so much assurance that they would keep a kind eye on me. I miss her very much but am glad she is pursuing her dream and getting some well-earned time off from 24-hour nursing. My dear friend Michael Farmer, whom I met 28 years ago when he was an undergraduate and I was a hip young prof at Tennessee, has moved out of his home in San Francisco and into our house during part of Pascale's absence. He is doing a great job of providing tons of distraction and humor. Michael even allowed me the fun of applying some OR decision analysis to help him with a business problem.
Karla and Ariela, friends and OR colleagues in the DC area were so kind as to offer accommodations in their homes for Pascale and me, if I chose to receive treatment at the National Institutes of Health. Their generosity touches me deeply. A new friend Ben in Boston sent healing books and Linda in Ithaca signed me up for the fruit-of-the-month club.
The Board of the national society for OR's, INFORMS, on which I serve as a vice-president held a meeting in Palm Springs in April. I had spent a lot of time helping to organize the meeting and planned to give a talk there, but had to cancel at the last moment. My colleague Jerry Brown filled in for me on the talk, and the whole Board, led by President Dick Larson, sent a wonderful poster showing them all "pulling for me."
My oldest friend, Jeff Wolin, came for a few days from Indiana, where he is a professor of photography at IU. Although he is way too modest to tell you, Jeff is an extremely successful artist, with several books published and galleries representing him in Chicago, New York and Paris. I am really proud of him, and in fact take a special personal pleasure in his success. Not long before he dropped out of medical school, I happened to show Jeff how to develop and print black and white photos, a hobby I had just learned at the time.
Jeff combined the visit with work on a project he is doing on Vietnam veterans. He is creating a record of the experiences of several veterans, similar to a project he did earlier on Holocaust survivors. For each vet, he creates a three-part installation including a snapshot they provide from wartime, an extract of an interview he conducts, and a portrait he takes with his large-format camera. The veterans represent the full spectrum of outlooks, from total patriot to anti-war zealot. There is no prevailing point of view. I arranged for Jeff to meet and photograph my colleague Gordon Nakagawa. Gordon is a much admired and beloved retired Navy Captain. When his plane was shot down, he was captured by the North Vietnamese and made prisoner in the infamous Hanoi Hilton. Gordon's heroic story is ever-more poignant, because he was imprisoned once before, in a WWII interment camp for Japanese-Americans, as a boy. He went on to serve his country nobly, as did many members of the earlier generation of Japanese-Americans who volunteered to fight in the US Army, going from the interment camps to become some of the bravest soldiers who helped defeat the Nazis.
One night my cramps were particularly bad and Jeff sat in a chair beside my bed. He showed me all the work to date on the Vietnam project with so much passion for telling his subjects' stories. The intimacy of a bedside conversation and his sharing what is important to him brought back the warm memory of spending time together as 11-year-olds.
Dave Morton flew in from Austin to attend his advisor George Dantzig's funeral in Palo Alto, and took an afternoon to come down to Monterey afterwards. I really enjoyed the visit, especially the cute stories he told about his 7-year-old daughter. She attended a high-power lecture in which he used the mathematical term "sup" several times. Her reaction was that it was getting close to lunch and soup sounded like a great idea.
Judy Philpot called from North Carolina yesterday. She was overjoyed with news of the wedding and is convinced she will totally love Pascale when they meet. Judy also dazzled me with incredible stories about the lives and adventures of her and John's amazing children and grandchildren.
There are many others to thank for taking time. My great friend and backpacking buddy Harlan Crowder came down from Silicon Valley yesterday. It was a spontaneous gift of his time when I asked for advice on setting up this blog.
I cannot tell you how much I appreciate all the love and support I receive, whether in the form of get-well cards, emails, food, phone calls, visits or just visualizations and prayers in your own private thoughts. When we beat this cancer, it will be everyone's victory to share. I love you. Rick
Click here for our wedding pictures.
7 Comments:
Well written sitrep, Dad. Thanks for keeping us informed. I imagine it's hard to keep track of to whom you have or haven't told the latest. Congratulations to you and Pascale!
hi from the Brit-girls! Congratulations on your marriage, how fantastic! Thanks for keeping us informed on the subject Rick, its lovely to have the contact we send all send our best wishes and cant wait to see everyone again some time not too far in the future, love liz and tups xxxx
Nice blog, dude. And congratulations to the beautiful couple.
Your Santa Monica friend keeps mentioning your name during our Shabbat service healing prayer and thinks of you often. Mazal tov on your wedding. You are most fortunate and truly blessed to have found such a beautiful, loving woman in Pascale. My wife and I pray that you both are blessed with a long, healthy and happy life together--you are going to kick cancer's butt!
B'shalom, H
Hello Rick and Pascale !! Quelle grande joie de vous savoir mariés, FELICITATIONSSSSSS !!!
Alain, Elykia et moi vous embrassons très, très fort. A très bientôt.
Now I can say that I know someone who's related to a Nobel Prize winner! How many degrees of separation? Two. Thank's for the update.
My name is Brian Lane and i would like to show you my personal experience with Ativan.
I am 30 years old .I started taking this drug about 10 years ago to help with some pretty bad anxiety and depression I was having at the time. I started taking a 1mg dose twice a day 1 in morning and 1 before bed. I tapered myself down to .5mg twice a day and then finally was able to get off it for about 3 months this year. I just started taking it in .5mg doses again due to the anxiety and depression resurfacing after 10 years. I dont know if its coming back because I got off the medicine or just that I am having a relapse but I have to honestly tell you that those years in between when I was taking it were the best years of my life. Just be VERY careful not to take this in larger doses.
Side Effects :
sleepiness, addiction It really helped me for what I was taking it for but it was very difficult to stop.
I hope this information will be useful to others,
Brian Lane
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