A Spoonful of Atavan Helps the Medicine Go Down

Most of you know that I've completed two of eight rounds of Rituximab + Hyper CVAD. I haven't mentioned that the protocol consists of alternating courses of "A" and "B." For my friends who are addicted to "Discovery Health," ER and every medical show on TV (you know who you are), I'm going to do something uncharacteristic and list the drugs in each course. If this level of detail makes your eyes glaze over, simply skip this post.

Course A is as follows:

* Rituximab (aka Rituxan, a monoconal antibody) at 375 mg/m2 on day 1 of each cycle
* Cyclophosphamide at 300 mg/m2 IV over 3 hours every 12 hours for 6 doses on days 1, 2, and 3
* Methotrexate at 12 mg IT on day 2
* Doxorubicin at 40 mg/m2 IV on day 4
* Vincristine at 2 mg IV on days 4 and 11
* Dexamethasone (steroid) at 40 mg/d PO/IV on days 1-4 and 11-14
* Cytarabine at 70 mg IT on day 7

Course B is as follows:

* Rituximab at 375 mg/m2 on day 1 of each cycle
* Methotrexate at 1000 mg/m2 IV over 24 hours on day 1
* Leucovorin at 25 mg/m2 IV, 24 hours after the completion of the methotrexate infusion, every 6 hours for 6 doses
* Sodium bicarbonate at 600 mg PO (starting day before methotrexate) 3 times day for 4 days
* Cytarabine at 3 mg/m2 IV over 2 hours every 12 hours for 4 doses on days 2 and 4

This listing doesn't include the "pre-meds," such as Benadryl, which is administered as a drip prior to receiving Rituximab, or any of the anti-nausea medictions, such as Atavan. All of these, by the way, send me straight to slumber land.

Dr. Forman and I have both come to the same conclusion: Course "B" has been much tougher on my body than Course "A."

The Right Size Bag for the Right Size Job

I worked my first job as a cashier at Cope Super Market in Ravenswood, West Virginia, decades before the "paper or plastic" era. In 1971, brown paper bags came in five standard sizes to accommodate everything from a piece of Bazooka bubble gum to a 25-pound turkey.

One of the first lessons I learned from the co-owner, Garland Cope, was, "Use the right size bag for the right size job." I was a penny-pinching high school student, but I couldn't understand why Mr. Cope, one of the richest men in town, zealously adhered to this mandate. If he witnessed one of his cashiers using an inappropriately sized bag, he would leap from his office perch and select and substitute the proper brown bag. (This only had to happen once before I learned the lesson.)

A few years later, in my early 20's, I began to understand that Mr. Cope's obsession transcended dollars and cents. I applied the lesson of using the right tool for the right job to my first elementary school teaching job. Some kids needed a whisper; others required a stern voice. Don't ever confuse who needs what.

Mr. Cope's maxim has served me equally well over the years through a mixed bag of careers: teaching, marketing, parenting and freelance writing and editing.

When I began to explore my treatment options for Mantle Cell Lymphoma (MCL), I could once again hear Mr. Cope's admonishment crackling in my ears: "Use the right size bag for the right size job."

Was Rituxin + CHOP (R-CHOP), a chemo protocol that had become the gold standard for MCL, the right bag? Would going for the more aggressive, intense approach - Rituxin + Hyper CVAD + Stem Cell Transplant - be like putting a piece of bubble gum into a turkey-size bag?

In my case, it became relatively easy to choose the right bag. Not only did the world-renowned Dr. Stephen Forman at the City of Hope make a case for Hyper CVAD, but MD Anderson Cancer Center agreed. MD Anderson also revealed that my cells are of the "blastic variety." There are three subsets of cells associated with MCL, and blastic is what you DON'T want your cells (or your children) to be. They're stubborn, aggressive and treatment resistant. At one time, in the not too distant past, this diagnosis was a death sentence.

But MD Anderson quickly countered the bad news with some good news. My written second opinion included the results of a 2006 MD Anderson study that announced that MCL patients with blastic variety cells have had excellent outcomes with the Hyper CVAD protocol.

R-CHOP would have been like taking a pop gun to a charging rhino. Or, to put it into Mr. Cope's vernacular, like trying to stuff a 25-pound turkey into a penny bag. Hyper CVAD + Stem Cell Transplant, on the other hand, appears to be the "right size bag for the right size job."

I think Mr. Cope (who passed away in 2006) would have been pleased with my decision.

(Do any of you have a Mr. Cope in your life who taught you a life-long lesson at an early stage of your work life? Please share in comments.)

News from "the inside"

I missed Susan's 7:30 a.m. telephone call (note to self: stop taking showers), but she left a detailed message. She said that after meeting with Dr. Foreman, all her doubts about the delays and drama of starting treatment just vanished. So she feels she is in very good hands.

George called at 9:30 a.m. (note to self: stop leaving the house) and provided more details.

On today's agenda is the colonoscopy, followed by the installation of a "permanent" IV line. This sounds a bit fearsome, but it's a whole lot better than getting punctured in a new place each time.

The chemo will start later today, as will powerful drugs to inhibit nausea. Susan said they let her know the anti-nausea meds will likely all but knock her out. Hey, catching Z's beats blowing chunks, am I right?

In an earlier post, Susan shared information about visiting her. To recap/update:

• The CoH visitor guidelines are here.

• You may call 626/256-4673 and ask for the "nurse on duty" for Susan Carrier to see if she is up to having visitors.

• Susan is in room #5231, if you want to send a card. (CoH is very picky about flowers and plants, so check the guidelines first.)

Y'know gang, it might make sense to give Susan a day or two so she can settle in and gauge her energy level (or lack of same). Visitors are so much more fun when one is conscious.

That's all for now...

Signed, Sealed, Delivered

On Tuesday, I spoke with the MD Anderson Cancer Center and discovered that I had three options for receiving a second opinion: in person, by phone or by mail. I would have to wait more than a month for face-to-face time or three weeks for a phone consultation, but I could have my mail order treatment plan in seven to ten business days.

This was, of course, seven to ten business days after they received my records. I called the City of Hope medical records department and learned that it could take up to ten days to process my request. That meant the entire second opinion process could take nearly a month.

But I don't have a month. I have less than two weeks with the clock ticking before I'm scheduled to start Hyper CVAD at the City of Hope on March 26. If I wanted to get a second opinion treatment plan before that date, I knew I would have to do some major "bird dogging."

This morning I received a serendipitous call from a friend who once managed the medical records department at Cedar Sinai. She encouraged me to walk in and request the records in person. (If that failed, she had a direct connection to the CEO at CofH, but I had a feeling I didn't need to bother the "big guy" with this problem.)

I took her advice and headed straight to the City of Hope. My assigned representative in the records department wasn't available, but Lisa jumped right in and wrangled my records. One down, two to go. I still needed my pathology slides and a CD of my MRI, PET scan and CT scan. Lisa called to let radiology know that I'd be coming over for my records, and they had the CD waiting for me when I arrived ten minutes later. I found the same fast and friendly service in the pathology records department.

I was in and out of the hospital in just under an hour with my complete cancer medical history in hand.

The experience reminded me of my first corporate job in marketing for AT&T. When a demanding client requested (or should I say insisted upon) an expedite from three weeks to three days, I would hand carry the order to ten different departments involved in the process. Then I 'd put on my tightest skirt and sweetest smile and drive to the central office, where I'd sweet talk a supervisor into moving my order to the top of the list. I'd usually follow up with a bottle of Chivas Regal as a thank you. (Hey, you do what you have to do for a client.)

Today, I managed to shave nine and a half days off the front end process at the City of Hope. The records will be on the desk of the MD Anderson consultant by 9 am tomorrow morning.

And I didn't even have to spring for a bottle of Chivas.

Hyper CVAD, Hyperactivity

I was beginning to think that the "hyper" in the recommended protocol - Hyper CVAD - stood for the hyperactive, frenetic activity that patients engage in BEFORE the procedure. I felt strong and alive as I skipped from the consultation room to the parking lot at the City of Hope. After lunch in Old Pasadena and an impromptu shopping trip for prom dresses for Cindy, I dove into a marathon six-hour researching spree.

Today, I continued in hyper mode - getting quotes to repaint the upstairs bedrooms, living room and dining room; going in to the office to tie up a thousand loose ends; investigating the quickest way to get a second opinion from the esteemed MD Anderson Cancer Center. The list goes on.

But halfway through the day, I hit a wall. For the first time since visiting my general practitioner in early January, a feeling of overwhelming sadness and fear swept over me. Sadness for the things I'll miss in the next few months, especially related to Cindy. Fear of what lies ahead. Sadness for the brave "cellmates" who have lost their lives in spite of a valiant fight. Fear that I'll be one of them.

When I'm feeling strong emotions, I always think of the words of Gudrun, a dean of students at an emotional growth boarding school that Cindy attended. "Your feelings are your feelings." (Note to those who don't know Gudrun: You must say this statement veeth a heavy German accent.) Feelings are neither good nor bad, justified nor unjustified, rational nor irrational.

With this in mind, I didn't try to suppress my feelings. I let them and the tears come to the surface. Then I remembered the follow-up question to Gudrun's statement. "What are you going to choose to do with your feelings?" I could choose to stuff them deep down and pretend they don't exist. I could isolate and withdraw from those who want to support me. I could turn the sadness and fear to anger and take it out on others.

My choice? To talk, to share and accept the support and comfort of others. Thank you all for your unwavering love and support.

Surprise, Surprise, Surprise

A funny thing happened on the way to the oncologist. Not funny as in "ha ha" or an evening at The Ice House or lunch with Paula, but funny as in surprising and unexpected.

I expected to start an 8.5 hour infusion of R-CHOP at 10 am today. I came prepared with my chemo companions, Cindy and Andrew, my Apple I-Book, a collection of DVDs, books and magazines. Cindy and Andrew had planned to read "The Notebook" to me during the infusion. (How clever I thought I was - providing entertainment for myself while getting my book-avoiding daughter to READ.)

But the books, magazines, DVDs and laptop were untouched. At 10:30 am, I learned that my chemo was cancelled. Before you start uncorking champagne bottles, let me explain. After closer examination of my PET scans, CT scans and recent MRI results, the team, led by the illustrious Dr. Stephen Forman, concluded that I need a more aggressive approach for my very aggressive mantle cell lymphoma (MCL).

They are recommending Hyper CVAD, a protocol that's highly toxic but highly effective. It requires that I check in to the City of Hope for four to five days of treatment, check out for two weeks and then repeat the process for a total of eight cycles. That adds up to about six months of my life filled with just one agenda item in my calendar: GET WELL.

The team is also recommending a stem cell transplant procedure immediately after the completion of Hyper CVAD, a process that requires a one-month hospital stay.

I had just come to terms with the effect that R-CHOP would have on my life and my calendar. But now I'm trying to wrap my brain around this concept of seven months of intensive treatment. At the moment, I'm in hyper research mode, reading everything I can find about Hyper CVAD and stem cell transplants. I'm also scouring the archives of the mantle cell lymphoma list serve for any mention of these two procedures and the patients' reactions. So far, a number of the "younger" (less than 60 years) patients have opted for this combo and have had overwhelmingly positive results.

I may fly to the MD Anderson Cancer Center in Houston, Texas, for a second opinion, but time is short. I'm scheduled to start treatment at CofH on March 26 and the doctors are uncomfortable with my putting off treatment any later than this. (I tried for mid-April, but I got the "What part of aggressive don't you understand" reaction.)

I'm in a bit of a daze. How can this insidious cancer be so aggressive when I feel so good?