Apr 09 Update From Patient Siggy

April 14, 2009

Dear Friends,

I finally have a plan. It's startling and jarring but it's a plan. My stop gap from fear, or anxiety, or insomnia is having a plan. Now, finally, five months after the wrenching statement, "I'm concerned about the 'hot spots' on your neck", to the blossoming lumps on either side during our two week tour of Japan, through extensive visits to Sloan Kettering and Vanderbilt and all sorts of tests and scans, we have a plan. It's a scary plan, without ending or resolution or conclusion but somehow, knowing what lies ahead is comforting or at least settling for me.

The plan is not laid in cement and it could change and I should have emailed all of you sooner. I love hearing some are concerned when I haven't written for months but the course is complicated. The road has hills and valleys and hazards around every turn. My new book keeps me focused on the horizon. Where I am heading unfolds each day on my laptop and then carves into clearer prose each night with a pen in the margins of a printed page.

My last chemo, number four, was last week. The first round was three days and I went into "toxicity", low blood counts. So the last three rounds they only gave me for two days of chemo. With the first two cancers I had six cycles of chemo and after four they redid the scans to see how effectively the chemo was in zapping the "hot spots" of cancer. Now they wanted to re-scan after just two rounds. I was nervous and skeptical going back to Florida for a week of recovery, this time with our son Daniel and Jim. With less chemo, I'm not nearly as weak, have no nausea, go for lots of walks and even play a round of golf.

The week I'm back home, I accept more radioactive stuff in my veins and manage not to move for the half hour of passing back and forth through the metal machine while saying a string of Hail Mary's and thinking, I'm doing this prematurely. The next day Jim and I met with Dr. Greer. All the hot spots of cancer were obliterated, history, toast. I couldn't believe it. After just one and a half rounds of the proposed four rounds of chemo, I was back to where I was in remission and my blood counts were all normal.

After the good news, Dr. Greer spends a lot of time talking to us about the "what ifs" to come. He tells us we are dealing with a "circular" issue and we will continue to weigh the options over the next few months. I have a choice. Most people who have nasty cancer don't have a choice, but I am in a position where I can "maintain" the disease with continued rounds of different chemo drugs or be more aggressive and go for a transplant and possible cure. Dr. Greer reviews options on our circle...or is it a roller coaster? Maintenance or transplant? I am the one who will ultimately decide which road to take and each revisit to the staggering question brings me closer to a decision.

Here is how I see it. Richter's has visited me three times. Every time I have full zap chemo, and even two days qualifies for full zap. I haven't done this nor do I plan to but I suspect if you interview oncologists across the country and ask how long I can "manage" the disease with chemo, the max would be 5 years.

If I choose a transplant, I could be cured but I could be gone. But think of how well I have handled all the chemo. Surely I will be cured. Dr. Greer makes us feel as if I am his only patient of the day, taking his time, going over all the possibilities for more chemo or a round of radioimmuno theropy, whatever that might be or going for the transplant. I am so lucky to have this doctor. At the end of our visit I ask, "If it were your wife, what would you advise her to do?" He answers, "I would tell her to go for the transplant but I'm not sure she would do it." There you go. His wife was like Jim, who would choose to "manage" the disease. Dr. Greer is like me and would go for the cure. Jim is supporting me the whole way but I have been married to this man for 40 years and I know if it were his cancer he would manage it until the cows come home.

Jim and I leave Vanderbilt, following the "s" curve walk way at the edge of the campus with fruit trees beginning to bud, cross the street to Hillsboro Village and have lunch and talk and I cry. Jim doesn't understand why I'm so weepy. Somehow I heard the "you could die" part more clearly this time. I asked Dr. Greer, "I'm so strong, I have reacted so well to all the drugs. Doesn't that give me an edge?" When I ask the nurse this question she blurts out, "Absolutely." But when I ask Dr. Greer he is more cautious, "Anyone can get graft vs host disease." I have read this will happen if the new white blood cells don't want to bond with the rest of my cells. Dr. Greer continues, "It could be fatal." Jim sits with me through a hard to digest lunch and then says, "Baby, this is your choice and I will support you the whole way" and then he has to go back to work.

I was feeling so fine this morning. Now I am drained and reminded of the last couple of months when I hardly had energy to walk to the kitchen. But I have positive things to accomplish after the doctor's visit. I have the energy to go to the grocery and then go to the recycle place behind Hillsboro High School and empty all the stuff filling the back of my station wagon. So I head off with a heavy heart but a positive mission and go down 24th to avoid the traffic in Hillsboro Village and pass right in front of Alice's house. I park across the street and called on my cell and she is home and can talk. Her house is all set up for a party she is giving for her mother-in-law's friends but she still fixes me tea and sits down. I size up the rooms and she really does look prepared for this evening, both tables set and dressed with orchid centerpieces so I thinks it's OK to take a little of her time and sit and accept the soothing green tea and tell her about the concentric decisions still floating in the air of the examination room we just left at Vanderbilt.

Alice shoots straight into the middle of the bull's eye. "Sigourney, you need to be yourself. You need to be you! You are the 'go to' girl. You are the 'double black diamond lady'. You need to go for it. You have such a positive attitude and positive outlook. Of course you will be successful with the transplant, just as you have been with your walk so far through cancer. The alternative is like a time bomb ticking off each month. That's not you. Go for it." We circle around a rehash of the same words for awhile, as women do and then I hug her. This is what I needed to hear and another example of God staying invisible behind the coincidence of Alice being there for my pep talk.

I go to the grocery and the recycle center with a bouncier step and then in the afternoon I walk with Peggy and tell her what Alice had said. She replies, "That is exactly what I was thinking but I wouldn't have had the courage to tell you." And I think they are both right, for me, for my personality. And I run into other friends who are skeptical about my decision. People think I can't tell which side they would pick but they're wrong. The issue is too electric for people to stay neutral.

The best or worst is we will have plenty of time to think. Dr. Greer tells us we can start the transplant procedure at any time. I think about the worst, missing Mallorca. Then Jim says, "What if we wait until the Fall? Why not let Sigourney enjoy the Spring and July in Monteagle and then August in Mallorca and then do the transplant in September?" Dr. Greer thinks. "We might have to do an extra round of Rituxan to keep the disease in remission but I don't know why that wouldn't work." So once again, I buy time and free up the warm months to enjoy gardens and green grass and mountains and oceans. And I think, especially about the magical Mediterranean, soaking in sun and salt for my yearly fix before six months of hospital time. If all goes well, I can be an "out" patient and just visit Vanderbilt each day.

In March, Carole and I go back to Florida for recovery week after the third chemo. And again, I am back to normal after just a few days and we walk and golf and I surely can't really be sick. I am so restored after a week of beach walks, I say "yes" to a business trip with Jim to Curacao, off the coast of Venezuela, for four days. I sit under a palm tree most of the time, editing this book and meet some great new friends from Brazil and Delaware. We come home on Monday afternoon. I take out the beach clothes and replace them with ski clothes and take off the next day at 7 AM for Beaver Creek and ladies week with Cindy and Anne Taylor and Connie. My ski clothes are all in one closet and the swap takes less than a half hour.

My skiing days are slow and labored and short. I don't go near the blacks, let alone the double blacks. I ski in the morning and Cindy arranges wonderful lunches at the spectacular private dining places on the mountain, Beanos and Zacks and then I go back to her condo and rest and think about the dozens of years we have been out here together and the diminishing number of skiers our age who are still pointing those sticks down hill. I don't get my monies worth out of the ski ticket but I am in the fresh Colorado mountain air and making a stab at the slopes and my favorite sport with the best companions. My ski buddies get major points for patience. No skiing from top to bottom this year. I have to stop a lot and my buddies stay with me, someone else always behind, just in case. And there is a reverence in the air at each "wait." The night I arrive, Beaver Creek has the largest dump of snow of the season and we ski powder for the first two days. Not easy for the out-of-shape patient, especially once lots of people have gone before you and the snow is heavy and chunky. Daniel and Anne and Matthew come and ski with us the last day.

Watching Matthew and Daniel dodging between the trees on either side of the slopes we are tackling is the best and worst part of the day. They are like ermines bouncing and bobbling in the snow but are they going to hit a tree? They disappear and suddenly are waiting half a slope below as we make our way more precisely down the center. We would hear them whoop and yell and laugh and I think how different these brothers are and yet how they enjoy so many things together, especially skiing and fly fishing. And I understand why two of our three son's have chosen life in Colorado even though it still snows in May. The snow and the mountains are so glorious and a stark contrast to my southern re-entry.

I return to Nashville after dark and sleep hard. The next morning I open the curtains onto our garden and experience the first act of Spring. The Pink Impression tulips stand two and a half feet tall, forming a half circle around the top garden behind thick clumps of blue pansies. I open the bedroom door to the patio and step out into heaven, crisp air, birds calling across the garden walls, the freshly cut grass a rich rug of emerald green. The weeping red buds bend in umbrella shapes on either side of the pool and more Pink Impression tulips and blue pansies fill the banks of the beds around the corner and going down to the piano shaped patio off the living room. The celadon poppies come up in new places each year invading all my beds with a sprinkling of grapefruit yellow. The wild columbine are in bud and hints of the pink and yellow colors begin to emerge as their delicate flowers blend with the tulips.

The peonies are in tight bud, ready to put their make up on for act two. Wait. Act one preceded my trip to the showy mountains. The daffodils and flowering fruit trees at the edge of the Vanderbilt campus had already burst into bloom in mid-March so my curtain opening moment is act two and the peonies will be three. One stage of the garden follows the next just like the monthly zaps of chemo.

After the second round of chemo, I am finally well enough to pick the grandchildren up from school and have them over for a few hours of play. I have just lost my hair and am wearing a scarf on my head, tied at the back of the neck. Baker asks, "Siggy, why are you wearing that pirates hat?" "Well," I reply, "You know I haven't been seeing you as much as usual. Siggy has been sick. The medicine they are giving me is sooo strong that I have lost all my hair." "Ooh! Can we see?" "As soon as we get to Siggy's house I will show you." "No, we want to see now!" So I pull over in the parking lot of St George's nursery school and lift up the scarf. "Yuck!", says Baker. Jack adds, "I didn't see, I didn't see." So I pull over again and flip back my scarf for another "Yuck."

After the third round of chemo, Connie and Anne and I are having lunch in Green Hills. A young woman they know comes to the table and introduces herself to me. "Hi, my name is Nancy. I just wanted to tell you how helpful your book was for me. I have just been diagnosed with leukemia." She just lost her hair but looks like a million bucks with her new wig. She tells us about a new place in Brentwood called the House of Hair and their fabulous wigs. She says the inside feels like a silk stocking. Mine is lined with plastic and unbearable on a hot day. Her wig is glued on and she wears it to bed, in the shower, swimming. She never takes it off. She will have to go and get it re-glued every six weeks. I try and wrap my mind around this concept of glued-on hair. The one advantage of my wig, the few times I wear it, is it stays set and fluffed on it's Styrofoam head in my closet and is good to go when I am with no fuss. But mostly I am happy with my "pirate's hat".

I receive many new messages from friends who have cancer or are closely connected to someone with cancer. These emails end with a prayer. I tell them I am praying back but with chemo brain it's hard to remember. I have my beautiful shaker box Jan gave me on my first round of cancer in 2005. Jan writes the names of people she prays for on paper and puts them in the box. I try to remember to do this so I can keep track of my extensive prayer list. Sometimes I'm so tired at night I ask God to remember them for me. He knows who they are without a list. I get an email from Missy, whose sister has cancer. She writes that she thinks of me when she is sitting with her sister in the chemo rooms at Vanderbilt. She prays for me and all the other people in the world who are undergoing chemo right now. What a powerful thought. Or maybe it would even be better if I just remember to pray for all of you each night. The elusiveness of prayer and where I really am with this disease, and what I am going to do with the cat hover above my head, just out of reach. If I go for the "double diamond" transplant, I will have to find a home for the cat. My daughter-in-law, Anne, has offered to come and get him and fly him to Denver for the six months I will be in a delicate condition. Have I told you how great all my daughters-in-laws are, Anne and Lisa and Jessie? Along with great friends, they will help me through all the bumps and turns. But in the meantime, I have a free Spring and Summer.

Oh, and I almost forgot. The new Turner Publishing version of Patient Siggy is coming out in May and was reviewed in Publishers Weekly on March 23rd. (Only 1% of books submitted get reviewed. How cool is that?) I will do a few more book signings during this window of wellness. The timing couldn't be better.

Thanks for sharing this journey and welcome to all new comers.

Hugs and Happy Easter,
Sigourney

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