Friday, December 31, 2010

Wigged Out

Mission accomplished with the wig. Faina was all smiles with her new coiffe, as much out of relief as out of the beautiful appearance. Her old hair had been mercilessly assaulted by the cats, who probably thought it was a synthetic mouse. It turns out the frisky felines did us a favor as the newer cranial prosthesis is a vast improvement on what became a pricey cat toy.

The house is full of lively conversation. Misha and Misha stopped in Brighton Beach for some shopping on the way down. Supper was the best a Russian delicatessen had to offer. We picked up Sonia from BWI.  Her travels began in Seattle and she was unaffected by a day of travel. Around midnight, the Leningrad Pediatric Medical School, Class of 1980 held an unofficial reunion, poring over old pictures, adding personalities, narratives, and updates on those captured on film over 30 years ago. For breakfast, the products of the Brighton Beach shopping trip made their way to the table as Misha fried up some blinchiki which were later topped with sour cream and caviar. Faina happily indulged in all the day had to offer.

As I draw on the close of a year, I look back on a narrative that would have done, Poe, Kafka,, or Beckett proud. I also reflect on many blessings some of which I was barely aware, others that did not catch my attention in the past and others that I have always recognized, only more so now. The lines separating trivial from important have been erased, priorities have been upended.  Appreciation for friends, family, acquaintances, and the random individuals who play bit parts in this drama we call life has been magnified. While to a great extent our hope floats on physicians' skills, CT and blood test results, and pharmaceutical wonders, quality of life is mostly sustained by the wonderful people who surround us, nurturing, encouraging, picking up the many pieces we have dropped, some working from inside the paint, others from the three point zone, and some out-of-bounds, yet in the arena, within yelling distance. The years I devoted to total immersion in existential philosophy have served to give me a language, a point of reference, and a means to make meaning of this experience. From that perspective, the ultimate experience of Being is in relationships, responsibility, and time. As Sartre said, "It is what it is." The spiritual side of this journey has given me yet another sense of peace. The mitzvot and other teachings related to healing the sick, caring for others, choosing life have also provided inner strength as well as provided inspiration for others to take action and revealed the many angels in our midst. I look forward to the next year, sustained by hope, trust in humanity, fearless courage, and the knowledge that we are not walking this road alone. I raise a glass to those who have touched us and to those who we, in turn, have touched.

Shanna Tova and Shabbat Shalom

Thursday, December 30, 2010

Wig Salon Whoas

There we are in the wig salon. Faina's new wig is about to be pulled from the box, a prepare to a feast your eyes moment. At this moment, those windows to Faina's soul go into a dizzying swirl and she enters a state of breathless shock. Imagine expecting to see short chestnut hair, a Ginnifer Goodwin-Mila Jovovich look and getting more of a Shaun White (the Flying Tomato) appearance. With friends coming from far and wide to celebrate the new year, this tomato was not going to fly. Faina maintains a quiet cool while conveying a sense of hysteria, impending disaster, and the potential for mutual assured destruction. She has the codes and a finger on the red button. Pretty soon the 10 X 10 foot room is filled with activity. Can we find a wig to get through the weekend? How did this order go so wrong? Can we get the right one here in 24 hours? We leave the CMCRC with overnight shipping for the correct color (not 130/8, but 30/8, "Oops"), a 10:30 am delivery set, and a 1:00 pm appointment on the calendar.

It has now been a little over a week since the last dose of chemo. Faina doesn't have to poisoned feeling she usually has, but she still has the tingling in the finger tips and is still not feeling comfortable. The meds are minimally helpful. She has been somewhat sleepless the last few nights, but she "keeps on keepin' on." She is gamely sampling a variety of foods (lox, chicken, pelimeni, white roughy, soft boiled eggs).

We also observed a traditional Jewish interpretation of Christmas catching a film (Black Swan - give Natalie Portman an Oscar!) and supper at P.F. Chang's. This being Columbia, the dining population pretty much represented the Fertile Crescent (and a little further eastward). On Monday, we all went out for lunch to celebrate Margo's 22nd birthday anniversary. In the spirit of George Orwell, every day is a day to celebrate, some days are just more celebratory than others.

Friday, December 24, 2010

Cancer Cliche

This whole week has been pretty much cancer cliche to the tenth power. It is a chemo week so Faina has been miserable almost continuously. There was the sense of feeling like a walking Superfund site, 48 hours of nausea no medicine could overcome followed by hours of diminished nausea thanks to an IV dosage and another five-syllable pharmaceutical, an uncomfortable tingling at the fingertips, and a foul taste in the mouth brought on by the platinum in the oxalyplatin.

Another part of the cliche is the constant hope for a new option or even better, a medical breakthrough. We came a few steps forward on both of those counts. There was some progress with the pathology department at Johns Hopkins. We saw Dr. Koutrelakos, briefly, and he said that the folks at Hopkins are running tests with a different tissue sample than they were using before to find out if Faina is HER-2 positive. This could be potentially a big deal. HER-2 positive would mean Faina could start being dosed with Herceptin, a drug that has been used to treat breast cancer and has only months ago been approved for use with gastric cancer. In breast cancer patients Herceptin was able to shrink tumors, get rid of cancer cells that have spread beyond the original tumor, and help prevent recurrence of cancer. There is a 30% chance that Faina will be HER-2 positive so getting these test results has us patiently, cautiously anxious. Add to the cliche anticipating tests, being tested, and waiting for test results.

This leads me to the most interesting appointment of the week - Dr. Jesus Esquivel, oncological surgeon at St. Agnes. His first comment to Faina, and she hears this a lot, was on how healthy she looks. While this could be an exercise in building a patient's confidence and self-esteem, it is accurate. She has maintained her weight and much of her vigor. This was also in the last hours of a chemo cycle that would resume the next day. Of material interest regarding this physician is that he is uniquely skilled in a cutting edge surgical procedure, HIPAC. In addition, we found him to be exceedingly down to earth, charming, personable, sensitive, and, as it turns out, a neighbor. He pulled out a piece of stationary and sketched out the abdominal cavity, explained how the digestive system functions and dysfunctions, and the science behind HIPAC. His immediate advice, take walks and "Get fat." (With this advice in mind, Mom sent a kugel.) The potential for going ahead with this procedure will depend on Faina's next CT scan which will take place in the first week of January.

One more interesting appointment, - Since Faina's hair is thinning out, we went to the wig salon at the Claudia Mayer Cancer Resource Center. Our appointment was scheduled for Tuesday evening. The CMCRC is warm and welcoming and offers a great variety of services "for those living with cancer, their families and friends." This trip was made into more an event with the participation of Margo and Tanya. Faina and her entourage were offered coffee and tea. A high school student from Long Reach was there working on a video project and asked for Faina's permission to tape her visit, which was unhesitatingly granted. Faina tried out straight, wavy, and curly looks, assuming the countenance of a variety of actresses. One wig brought Meg Ryan to mind, another Ashley Judd. It was remarkable how different she looked with the various wigs. It is no wonder they are part of the detective/spy disguise repertoire. Selection made and final fitting, next week. The receipt, with a nod at the insurance company (our other partner in this journey), is for a "cranial prosthesis."

And so it goes.

Monday, December 20, 2010

Delightful Weekend

It is great to have had a pleasant last few days before starting up the whole chemo cycle tomorrow. We did some shopping on Friday and had lunch out. She wants to shriek every time she catches a glimpse of the basement carpet and so we looked at carpeting, made some choices, forked over a down payment, and even scheduled installation. This is fuelled, in part, by Faina wanting the house to look right for some visitors coming from distant parts of the country over the winter break. We had neighbors drop by Friday night and other friends on Saturday afternoon. Big smiles from a bouquet of flowers and from a gift basket.

A big highlight - Since Jamie's Thursday night dance performace was snowed out, we went to the Saturday night show. Between dropping her off more than an hour before the show; getting to the school early enough to get good seats; 90 minutes of wonderful tap, modern, hip hop, and ballet; and a celebratory post-performance supper, the evening was an all enveloping family event. It felt Norman Rockwell normal, a step removed from the new normal where everything is refracted through the lense of adenocarcinoma. Jamie is a Junior and we've been to five of these events. It is a treat to be present for these milestones, relishing the geometric progression of her dancing skills and confidence on the stage. A fine time was had by all.

Faina spent the better part of Sunday with her BFF Tatiana. Besides a few hours of Russian television, they made a project of concocting a pot of turkey soup.

Monday will be back to business. An early AM appointment at Maryland Oncology and a much awaited appointment with Dr. Esquivel, exploring the possibilities of HIPEC (Hyperthermic Intraperitoneal Chemotherapy). There could be more on that later. For now, I will savor a weekend to be cherished.

Wednesday, December 15, 2010

Rap Rhythm

One of the blessings of having a teenager in the house is that you are challenged to listen to music you would never intentionally play. Left to my own trajectory jazz and rock would fill the air. Jamie ads a healthy dose of show tunes (performed live), hip-hop, and rap. None of this is growing on me, but I am developing an appreciation for the manic, aggressive, angry, immediacy of rap. This past week has been played to a rap rhythm.

When this cycle of Faina's chemo started a week ago, Dr. K was satisfied that the treatment is working, which is to say that it is holding the cancer at bay, maybe even shrinking the tumors. To keep this in perspective though, this is like bailing out a sinking ship. As long as you are passing out buckets of water it stays afloat, but as soon as you stop bailing, it will take on water. That is pretty much the point Elizabeth Edwards reached, a news story that added a degree of gloom to this household. Mrs. Edwards' chemo was no longer effective, she stopped treatment and the flood comes in until the ship sinks.

We may be getting a bigger bucket. Faina has a 30% chance of qualifying for a new therapy for gastric cancer. The drug, Herceptin, has been successful in treating breast cancer and last month was approved for treatment in gastric cancer (it was approved in Europe back in February). It may be weeks before we know, especially since we are hung up in the less-than-cooperative pathology department at Hopkins, which has the stomach tissues that were removed in August 2009. Nudging them has become a daily task.

Faina will also have a CT scan in about three weeks, so we will have a measure of how effective the treatments have been. Meanwhile, we have an appointment on Monday with Dr. Esquivel at St. Agnes to explore the possibilities for that "Hail Mary" of a surgery-chemo procedure about which Dr. Avital at NIH-NCI told us.

On Monday, Faina started to get her energy back and our activity level picked up. We are in a rap rhythm, manic, aggressive, angry, and very immediate.

Monday, December 6, 2010

And the cycle is about to begin again

We are in the last few hours of this current chemo cycle. A reminder call came on Friday for today's 2:45 appointment. It is a blood test to make sure she is healthy enough for tomorrow's chemo. Before going to sleep, Faina asked me to take her out this morning. Her once soldierly marching into the fusilade of toxins that make up the FOLFOX infusion has shifted, replaced by anticipation of the week of feeling poisoned, experiencing the side effects of nausea, sleeplessness, a GI tract thrown into turmoil, and an emotional battering. She wants to make the most of the earlier part of this day and has laid out an agenda that includes a few stops before arriving at the oncology center.

The first thing Faina did today was reply to emails from patients and colleagues. Sentiments that come up repeatedly are: "You were always one dentist I felt cared about me as a patient and a person. Thank you for doing that ... I will say a prayer for your recovery." For year's it has been a treat to run into Faina's patients at public events and in public spaces, being introduced to spouses and children, getting big demonstrative smiles exhibiting her work, and seeing a certain rock star status, short of asking for autographs.

Another wrote, "Want to let you know I’m thinking of you and that you’re in my prayers. I was extremely saddened to hear that you’re ill again. You’re a wonderful, warm and strong person and I’m fortunate to be able to call you a friend. Stay positive, keep fighting and let me know if there’s anything I can do to help you."

It is difficult to say there isn't much people can do to help, although some individuals have proven far more imaginative than anyone under this roof. The highlights reel is filled with small graces like a challah or a zuccini loaf, flowers, a card, or a CD or interventions like when somebody or somebody who knows somebody has been able to clear a path, overcome obstacles, bend a rule, make a contact, and otherwise change the course of ordinary circumstances. These acts are the equal to any biblical miracle, creating something from nothing, parting seas, or endowing with new potential. It is amazing to witness the many "movers and shakers" in our midst, the angels among us. What to do? Stay in touch, keep Faina in your prayers, and pick up where she left off in the many projects she had to drop. Do forgive the miscommunications or the non-communications and know that she misses the people who she has been able to touch and who have touched her. Faina's greatest wish is that her narrative would not have included this plot twist. Nonetheless, there are chapters yet to be written.

Friday, December 3, 2010

The Daily Show

We had a glorious day yesterday taking advantage of Faina feeling generally decent in the second week of her chemo cycles. A former student put the "Audience Supervisor" at the Daily Show in touch with me and while trying to work out going to the show in a few weeks, I finally asked, "How about tomorrow?" Her answer was "Perfect" and we made quick plans for a day trip to Manhattan.

Jamie played hookey, Margo did her project work late into the night and took advantage of the WiFi on the Mega Bus, and Faina and I enjoyed the scenery from the upper deck, front row seats. At this point, we can't do much walking, so we took taxis everywhere, to Ben's for lunch, to the studio at 52nd Street and 11th Ave., to 5 Napkin Burger for supper and to 31st Street and 9th Avenue for the return trip.

Faina is a huge Jon Stewart fan and this family outing was a great treat. We were ushered into the Crew Lounge where we waited to be seated in the studio along with other "VVIPs" (Very Very Important People)as we were called by our handler. The "fluffer" (the warm-up comedian) got the crowd psyched and Mr. Stewart came out to take questions, at first saying that they had to do a lot of re-writes, were running late, only had 30 seconds, but took a lot of questions and was clever with his answers. Then the show started and WOW how fast the segments move along. It is taped around 6:00 pm for airing at 11:00 pm, but it moves as if it is live, the breaks between segments move in time as if there was a commercial breaks, there were no second takes, except at the end he re-read a few lines that would be "Seamlessly" edited in. He is every bit as charming, warmhearted, and self-deprecating live as he is on air. This whole day was a delightful Hanukka gift.

Tomorrow is our 24th wedding anniversary. Hanukka came late that year, so the two did not coincide, but we met at a Hanukka party, so this holiday has long been special for us.

Happy Hanukka and Shabbat Shalom

Wednesday, December 1, 2010

You Wouldn't Believe The Stuff We Watch

Faina has been a bit under the weather for the past few days, a cold. Of course in her condition, a cold is nothing to sneeze at (insert groan). With so much rainy, dreary weather of late, we have not gone out much and so television has been asserting its presence. We watch a lot of romantic comedies and last night we watched Leap Year. Tuning in to anything always carries the potential for hitting a raw nerve. In this case that moment came at a wedding party scene. The bride makes a toast and, given the setting, it is a traditional Irish one:
“May you never steal, lie or cheat.  But if you have to steal, then steal away my sorrows.  If you have to lie, then lie with me all the nights of our life. If you have to cheat, then cheat death because I don’t want to live a day without you.” The sobbing rose slowly and dissipated equally slowly. We hugged and held each other tight.

I was thankful that Faina slipped off to lullaby land before the end of Bored To Death. We tuned in late, but in this episode, George (Ted Danson) is diagnosed with prostate cancer and thinks he may not survive the surgery. Jonathan (Jason Schwartzman) visits him before the operation and after George is taken to the operating room sees that the medical file is for a different patient. This leads to halting the surgery and the discovery that George is disease free. In the closing scene George expresses his relief over not having cancer and that he is not going to die. Jonathan points out that his good news is someone elses unwelcome diagnosis.

This morning Faina woke up hungry for cream of wheat and a cup of Earl Grey. She is making a project of eating, trying to maintain her weight. The TPN is good for nutrition, but less of a vehicle for keeping on the pounds. She would also like to gain independence from the intravenous feeding. She gets the TPN for 12 hours now, much easier to deal with than when it was spread over 24 or 18 hours, but the line gets kinked and sets off an alarm and in the time she is up and moving around the tubing invariably gets caught on knobs or furniture and is a constant cause for concern. Dr. K says give it at least a few more weeks. And so it goes.