August 30, 2006

 

 

Too many weeks have gone by since our last update but here’s a stab at catching you up with the Chaffee's summer activities. 

 

We went to Boston on Friday, June 30th to see the boys and to be the object of A&E camera’s affection.  The flight there was not-to-be forgotten.  Trying to ignore the screaming child seated across the aisle from Jim, we opened our laptops and read an e-mail that Revlimid, the miracle drug, was finally approved by the FDA for use by multiple myeloma patients – that would be me.  I had waited months for this announcement.

 

In Boston, we claimed our luggage and picked up our rental car.  Since it was the July 4th weekend, the only vehicle available was a huge SUV, perfectly compact for maneuvering through the small side streets of Boston.  A&E put the boys and us up at a very nice city hotel; when the boys finally found us after their work, I woke long enough to say “good night” to them then fell right back to sleep.  I wanted to be awake and ready for our 8:00 a.m.  A&E meeting in the hotel lobby.  First, though, Lori, the producer of the documentary, came to my room for a wardrobe check.  I had several outfits hanging in the closet, and of course, she chose one that was way down on my list, but who was I to argue with such an esteemed producer?

 

Lori, her assistant, and a local cameraman had filmed Elliott and Taylor earlier on Friday at Whole Foods where they both work, hoping to capture a typical day in the lives of two young college/working men.  Later, they staged Taylor riding his bike and Elliott walking next to the Charles River.  A few seconds into the take, they looked at each other, stopped, turned back to Lori, and said, “Uh, this is goofy.”  She agreed and stopped filming.  They filmed Taylor in a park doing some pencil drawings for his art class assignment and Elliott during a late night band rehearsal. 

 

Saturday morning, the A&E crew followed us to the New England Aquarium, where we fed seals and a 100-year-old sea turtle. After a nearby courtyard cafe lunch, the boys promptly fell asleep in the chairs.  That evening, Lori treated us to a wonderful Spanish tapas dinner.

 

Our full Saturday led to Sunday as a rest day.  An hour-long drive on Monday morning took us to a recording studio north of Boston, where Elliott’s band, Hats and Glasses, recorded a few songs for their new album.  The cameraman was there to catch the take and retakes of Elliott’s vocal, as well as to interview Supriya, the bassist, and Tommy, the guitarist and Elliott’s best friend since fifth grade.  After a few hours of hanging with the young and cool, Jim and I headed back to Boston.

 

Nearly to the city limits, I had some sort of chemo trauma; I became so hot that streams of sweat soaked my blouse and jeans.  We drove to Jim’s favorite Boston restaurant for fresh oysters, where we learned the wait would be more than an hour.  When the hostess took a look my top (like a contestant in a wet-t-shirt competition), she suggested we go next door where service was faster and the menu basically the same.  As soon as we were seated, Jim told the server that I was on chemo and needed bread immediately.  My soggy curls, perspiring face, and drenched shirt sent her running.  It seemed like an eternity before she arrived back with steaming hot bread and warm butter.  It tasted like heaven; but poor Jim.  They were out of oysters.

 

We flew back home on July 4th to repack our suitcases and fly off to Denver on the 6th for a book convention and my writer’s group conference.  My showing up was a complete surprise, allowing me a most ‘humble’ diva-like entrance. (I know you’re not surprised!)  It was so much fun to walk in on women who have prayed for me and sent cards, e-mails, quilts and books over the past two years.  It was a wonderful moment.

 

Well, not everthing proved wonderful.  The ladies greeted me kindly, with words of affirmation.  “Janice, you’re such a great writer.”  “I love your humor in spite of your pain.”  “Janice, I love your updates.  They are so honest and refreshing.”  All these comments were very nice and appreciated.  But I noticed that after a brief encounter with me, many of them turned to Jim.

 

“Oh, Jim.”  No, wait.  It was more like, “Ohhh.....Jiiimmmm!  Your recent update, “Lament for a Caregiver (wipe a tear), was so beautifully written.”  “Oh, Jim, your “Lament” was so amazing; I called my sister and read it over the phone.  We both cried.” (big hug - for Jim)  “Oh, Jim (grasping his hand in both of hers), your writing is so moving (stifle sob).  “Could I please have permission to use part of it in my next book?”

 

Admittedly, I was a bit peeved.  When we got in the car to return to our hotel, I began mocking the women.  Oh, JIM, you’re so great.  Oh, Jim, you’re such a talented and gifted writer.  At this point, Jim’s dimples began to show which meant he felt guilt – and a bit proud.  I continued.  Oh, Jim, your writing moved me so (sniffle).  Oh, Jim, you expressed the inexpressible, what we’ve all felt but couldn’t say and you articulated it beautifully.  By this time, Jim was laughing with embarrassment. 

 

“That’s great,” I said.  “That’s just great.  But what your adoring fans don’t know if that it took you three months to write it; you used MY mentor and editor Barb Pine; you talked on the phone almost every day, hovering over each word and punctuation mark, and debating the theology of your thoughts.  You wouldn’t have had anything to write if I hadn’t been DYING of CANCER!”  It was a funny moment; funny and true.

 

In Denver, I met with my New York literary agent, who is representing a book comprised of all these updates.  Hopefully, my letters to you will encourage other cancer patients and their families.  It won’t be presented as a Lance Armstrong-type survivor book.  I will not take a victory lap; I will not stand with a bouquet in my hands on the winner’s podium; a gold medallion will not hang around my neck.  My story is not about the destination, but about the journey and those who travel with me.  I hope a publisher will understand the message and take the risk to print it. 

 

We flew home on the 11th of July and I could hardly wait for my appointment with my oncologist on the 13th.  Finally, the day for the Revlimid prescription, the miracle drug almost guaranteed to kill/inhibit the cancer.  After bloods labs and a skeletal survey, Dr. Jagasia gave me the paper we had both been waiting for: a prescription for 56 pills – take two a day for 28 days - at the cost of $250 a pill.  Thank God for insurance and co-payments.

 

The A&E crew was at my house the day the Revlimid arrived by Fed Ex.  I had to sign for them, as the drug, a derivative of Thalidomide, is very dangerous in the wrong hands.  The crew followed me to the Clinic for another MRI on July 19th.   Dr. J. asked if I had any reaction to the drug.  “I’ve only taken it for two days,” I told him.  “Could I react so soon?”  He warned me that I could and to be on the look out for any rash or sores or breathing problems.  I assured him that the drug was great.

 

On July 20th, A&E filmed me and Lari White (a renowned country artist, recently lauded in TIME magazine as co-producer of Toby Keith’s new album).  She wrote the music to a lyric I had written for Jim.  Years ago, an interviewer asked me and Jim how long we had been married.  I looked at my beloved husband, not knowing how our lives would change in the future, and said, “Not long enough.”  Those three words rotated in my mind, and after I was diagnosed with cancer, I wrote the lyric: 

 

You slipped the ring upon my finger

Said pretty words we didn’t understand

We walked down the aisle, all innocence and smiles     

White roses and bright hope in our hands

 

We’ve walked the crooked road toward forever          

The years have etched our story in your eyes

When I think about how long we’ve been together

My heart cries out an answer that takes me by surprise

 

Not long enough, not long enough

To walk beside you in the rain

To hear the way you speak my name

To linger in the comfort of your love

Not long enough.

 

© JMCx2 Tunes, 2004 

 

Lari wrote the music, which beautifully fits the lyric.  A&E had us recreate our writing session and Lari recording the demo.  It was an emotionally charged day.  When the crew left, I was content, feeling that life was finally under control.  I still didn’t know why A&E had chosen me for their documentary, but I was honored to share the little truth I’ve learned from my cancer journey.

 

I continued to take my pills with great hope.  On day five, I showed Jim two little red dots on my left thigh. “We need to watch these and see if they get any bigger.” By day seven, an itching rash appeared on both legs and my upper arms.  On day nine, I had another appointment with Dr. J. 

 

By the time got to his office, I looked like I had a bad case of the measles.  He took one look and told me to stop taking the Revlimid as I was having an allergic reaction.  If I continued to take it, he said, there was a possibility that my throat would close up – and I would die.  That was all I needed to hear to understand the severity of the reaction.  I learned that not only did I have to stop the Revlimid, but that no other chemo/drugs were available for me to take.  Nothing.  No other chemos, no other drugs.  I was allergic or reacted to them all.  No more were available for me to try.  I cried.  It was July 27th, my 54th birthday.  But Dr. J. said that I was 90% in the clear; the other 10% will be taken care of as it comes up.  He assured me that my donor’s blood had done its job; my blood and marrow were cancer-free.  The horrible myeloma may or may not be hiding in my body.  If it is and grows, it will cause pain. If it does, we can locate it and zap it with radiation or take it out with surgery, one spot, one fight, at a time.

 

Jim and I were supposed to go out for dinner with friends for my birthday, but I opted to stay in bed and cry all night.  On the 28th, I lifted myself from bed with renewed resolve.

 

On Sunday, July 31st, my beloved mentor/editor/friend Barbara Pine arrived to help me edit a manuscript that’s nearly three years overdue.  She worked me until 3:00 a.m. one night, cracking her editorial whip.  I was exhausted when she left at Thursday noon to catch a flight back to Seattle.  Or, I thought she was catching a flight...

 

Story continues in Update 46