Oct 09 Update From Patient Siggy

Dear Friends,

Fall is here and the stem cell transplant date is scheduled on October 30th. I will have chemo preparation starting on October 19th. After the 30th, life will be very quietly for three months, possibly longer. As a “donor match” (using my cells or a sibling match was ruled out) I will be given a “lower intensity” transplant and will be mostly an outpatient with daily visits to Vanderbilt.

What can you do to help??? Please consider participating in the Cathedral Blood and Bone Marrow Drive at the downtown Christ Church Cathedral, Saturday October 24, 9 a.m.-1 p.m. and Sunday October 25, 9:15-10:45 a.m. For more info go to http://www.givelife.org/ and enter sponsor code christchurchealth19 (lower case). Join the team. And please encourage African Americans, Asians and Indian friends to come too. Believe it or not, patients are more likely to match someone from their own race or ethnicity (the “markers” for a match have nothing to do with blood types) and the percentage of non Caucasian matches in the system is very low. A few of my friends are off the hook. One needs to be 60 or younger with no history of cancer to join the Bone Marrow Bank and the best choice is the youngest candidate with the fewest pregnancies. Think of the immune systems we pass onto our babies.

My email contacts will be a lifeline and of course I love cards and light movies on DVDs and books or books on tape.  Food “rules” are so tricky that I can not have people bringing meals. Visits will be very limited for awhile and no flowers.

Everything is ready. The air ducts are cleaned, the oriental rugs have disappeared, think of the dirt in those, my book shelves and closets and floor boards sparkle. Now I wait and remember the summer.

Most of July in the cooler and crisper days of the Monteagle Mountain was mellow, laid back, easy.

The grandchildren, 6 and 4, could wonder a bit. They went to the ladies library across the street and sat on the porch or spoke with the librarian, Cindy and chose books to bring home. They rode their scooters up and down our street. They played make believe under the trees across from our porch and they spent each morning in the little camps for the “Mockingbirds” and the “Eaglets”, where friends joined them and then they all went to the cafeteria for lunch where Baker and Jack were fascinated by the Coke machine. Uh oh, their mother doesn’t allow them to drink Coke but they really didn’t drink very much. They just wanted to watch it pour out of the machine when they pressed the glass against the lever. The first day, Jack’s meal selection was a hamburger roll and a cookie but we progressed over time. And after lunch they would come back to our house and spend hours on the porch swing. The small community of the Monteagle is like going back in time to a very small town where everyone knows each other and the world is safe and outside in the cooler mountain air.

And then Jim and I left for Mallorca on July 31st. We spent the first night with my brother and his wife, Kevin and Barbara in their stone farm house, nestled in a mountain valley, surrounded by cypress and fig and almond and carob trees, the property defined by ancient dry stacked stone walls. Architectural Digest, eat your heart out.  And then we took up residence in our beloved “El Barco” by the sea. We had our children for a week, we had two couples for a week and then Jim left and I had five women for ten days. Each mix was slightly different except for the mornings reading books and the universal lunches of fresh fruit and salad and local cheeses and bottles of rose wine on the terrace falling into the sea. No one wanted to leave and go anywhere else. The last week, Nicky stayed and we went back to Barbara and Kevin’s for more good food and good company and excursions to look for local Mallorcan fabrics and pottery and more of the delectable green mustard, made with parsley and basil, which everyone brings back home.

We were home for two days and went to Ponte Vedra for Labor Day with the grand babies again and our oldest, Jaime and his wife, Lisa and her mother, Nancy. Grandpa - Jim is still going strong at 91 but is afraid to venture out on an airplane and mount the eight step entrance to our house. His world has closed in and he has formed a cocoon around his assisted living apartment where the biggest adventure is the three walks a day to the dining room pushing his fancy new walker and maneuvering the remotes for his new big screen TV and finding his glasses.

My world is closing in too.

I come home the second week in September and spend three days having every test Vanderbilt offers. At least it felt that way. Before a stem cell transplant, the patient needs to get a clean bill of health. There can be no heart or lung problems, no recurrence of nasty cancer cells -- no sickness at all in the mind or body. A “social worker” checks me out to see if I am stable/sane enough to undertake the journey. Then in the middle of September, Jim and I spend four hours with my new medical team and four more hours, on another day, learning how to be a good caregiver. I was surprised when they didn’t spend very much time talking about having the house as clean as a whistle. The talk about food seemed to dominate the morning. Get this. No pepper and no grapefruit. I need to go back and ask about the pepper thing. I put lots of pepper on everything. But with four hours of grilling you don’t get into too much time for reflections of …’why is that?” You’re writing away and don’t want to miss anything. Everything I eat has to be well cooked, well cleaned and eaten within 48 hours of when it was purchased. And of course, I knew there would be the “no wine” alert. I hope I won’t be curled up in a corner sucking my thumb. But, wait a minute, what about orange juice or bread or milk, or strawberry jam? Do we need to get individual servings to comply with the 48 hour thing?

I can’t go to a deli or salad bar or choose any food touched by someone else. But what about the hypodermically wrapped chicken breasts from Tyson’s? Who wrapped those?

And then I woke up thinking about lunch. I am in the hospital, having chemo or back after the stem cell and having…I haven’t gotten that far but they will be doing something. Dr. Greer told me I will be in the hospital for four hours on a good day and eight hours on a bad for the first month. So OK. I can’t go to a deli. I can’t have a prepared sandwich. I can’t have some unknown soup that could have…pepper. A suggestion at the caregiver class was canned chicken. Pluk, pluk. Are you kidding? A suggestion was to try all the products they give to non eating geriatrics like “Ensure. I better have another glass of wine while I can and think about this tomorrow at Tara. And also, in the fridge at home is ketchup and mayo and strawberry jam and eggs, a carton of eggs. Do I, excuse me, someone else, I will not be driving for the first three months, go to the store and ask for two egg at a time?  Connie has volunteered to clean out the fridge while I am at the hospital. She might discover treasures old enough to donate to the Cheekwood museum collection. Jim will be thrilled with the tax deduction.

I am reading copious notes from the care-giver class. Nicky came with me and brought a tape recorder which I have listened to twice. Some say washing your hands as long as it takes to sing several choruses of Happy Birthday are you is the best. Doctor Daniel says the liquid gels with 60% alcohol are the best. In 2006, I gave up coffee and started drinking three cups of green tea a day and feeling self righteous. I gave up my beloved Diet Dr. Peppers and started drinking bottled water. But then I found out if the bottled water had been exposed to high temperatures it would transform into poison. How do I know what kind of truck delivered my bottled water to the store? I get gas in Monteagle and see a mountain of bottled water piled outside. Although it is usually cool, we do have 100 degree temps at times and those bottles are sitting out there, getting a sun tan, every time I gas up.

I know you all know not to put anything in the microwave in plastic. And, if you lived in Europe, you would be horrified by the extended use of the microwave in the first place. Over here we say we never wear polyester, over there they don’t mike.

So then I hear something about the benefit of one cup of coffee a day and my doctor advises it would be best to only drink one cup of green tea. And God knows whether or not there are bad chemical in the paint and insulation in our 1920s house.

And speaking of God, wouldn’t you think you would be safe in church? I just got an email from my friend Judy. Researchers have determined that if you go to communion and dip the wafer into the wine, called “intinction” – don’t you just love that there is a word for that?? – the contact of fingers into the wine is more germy than sipping from the cup. “Blood of Christ”, help! I guess the Roman Catholics had it right all those years ago never trying to fool around with public distribution of that wine.

I can not have fresh or dried or plastic flowers. I can’t have a real fire or a Christmas tree or Christmas decorations, too many dust collectors. Ho, ho, ho. The house has been denuded of flowers, real or fake. My usual winter ritual of amaryllis bulbs blooming in pots all over the house is on hold. Our big Christmas Eve party is on hold. And all of this with no wine? Maybe I could slip out a few of my angels from Italy to watch over me.

I guess a pumpkin outside for Halloween would be OK but someone else will have to hand out the candy to the germy little witches and goblins.

I really shouldn’t eat anything not cooked. Fruit has to be pealed. Everything has to be fresh and eaten within two days. Jim has claimed he will take over the kitchen. I am thinking of my poor pots and the things I never put in the dish washer. I have chucked my wooden knife holder, my wooden chopping boards, and I will put away my jug of wooden spoons. I am slowly removing almost everything from the tops of counters in the kitchen and bath. I am buying cheap cutting knives and putting them in the dishwasher. I am putting my good frying pans in the dish washer. They will be ruined but germ free. I better let ammonia sit in my garbage disposal for awhile and rinse my electric kettle with vinegar and throw away those sponges that soak up and store more than water.

Jim has ordered a new toaster oven. I am glad my current one was not in a car wreck and exposed to the world.

When Jim and I met my nurse practitioner, Sharon, who is terrific, she gave me a calendar with a “guestimate” of what would happen next. Finding a donor takes about four to six weeks. They found a perfect 10/10 match. I am very lucky. Some people don’t have a match, let alone perfect numbers.

On October 19th I go in for a “prep” day. The next day they take out the old port (in place since 2006) and put in a new port with three lines hanging outside my chest. I call this my “octopus”. Then I can look forward to nine days of chemo, five out-patient and four in-patient and then on “day zero” they give me the stem cells. This is a non-event in terms of trauma or pain. It will be like a blood transfusion but a little longer, about three hours. Then I will be watched like a bug under a microscope for 100 days. But if all goes well, I will do this on an out-patient basis, even though I will be at the hospital every day for the first month and every other day for the next two and I will have to be super careful for a year.

Still, I will need to try and walk every day and do exercise.  I can be outside with a mask or even without one if I am not around people.

This will be a year of isolation and caution and ups and downs with fevers and infections but I have been preparing for this for a long time. The doctors started talking about a stem cell transplant in 2006 so I am more than ready and have read reams about the hurdles and bumps and consequences. When the doctor first described the new port I went into melt down. I’m flippant about it now. You should have seen me the first time Dr. Greer introduced to notion. My anxiety was a slow smolder building to shakes and shivers and sweats and requiring extensive conversations with extended friends to reign it under control, followed by a bottle of wine that evening to cover the last tremors. But now, I have taken it out of the box, so to speak, and named it. The “octopus” and I are going to get along just fine. Bring it on.

I did one last book reading a few weeks ago at Christ Church Cathedral. The room was packed. More than 100 people came. My gut feeling was it was one of my best readings and I was so honored by the turn out at one of the magical places in my life with so many of my church family but many other friends as well. Thanks to all of you who were there.

I thank God for the gift of writing and for being able to stay connected to so many of my friends during the many challenges of this stupid illness. As I said to Judy, Hilda and Tooty before the reading, I am so grateful for the friendships continuing to grow in cyberspace. Some of us are closer than we would ever have been passing our joint lives at a cocktail party here, a restaurant dinner there.

Oh, and one more plug. Jim was in NYC two weeks ago and Patient Siggy was being featured, facing out on the top shelf in the biography section at the Barnes & Noble store on 46th and 5th Avenue. There were ten books. He went back two weeks later and there were only three books left. I’m back to my roots in the Big Apple. I wish I could be up there to put my books in a more prominent spot but please, if you are in the City, or any Barnes & Noble story, as about Patient Siggy and keep is “warm” while I’m out of circulation.

I hate to loose the momentum of no more signings and am trying to think of ways to make my website more interactive. I will try to keep up with my responses to all of you but know I look forward to our chats on a daily basis and if I am slow getting back it’s the “octopus” interrupting again.

I am still editing the next book but another one seems to be emerging out of the bumps and hurdles of the stem cell journey. Most patients I have spoken with are in the hospital for the first month, my “lower intensity” transplant will be out patient most days.

Oh wait, one last book related item. My publisher Turner Publishing is having a drawing at the end of the month. The winner will get 13 free books – fingers crossed at least one of them will be mine. To sign up, go to http://www.turnerpublishing.com/.

Reading and writing will keep me going through the months ahead and together we will share a challenging journey into unknown territory.

Remember how your mother always told you to have clean undies for the car wreck and emergency room visit? My undies and PJs and pull on knit and stretch exercise options are prime and ready for action and possible viewing by God knows who. I have a little bag ready for short hospital stays. My lap top has a slot for DVD movies and I have the Jane Austen BBC series and Brideshead Revisited. Kate is demonstrating her new sleek ipod and suggesting Kindle options. If there is another Jack Nicholson & Diane Keaton movie, please send it to me immediately, especially if it takes place in a house on Long Island with wide planked pale floors and white furniture with an occasional touch of aqua and marine blue stripped cotton rugs.

And please let me loose weight, like Diane did, enough to do that nude scene, and live to prance, even though you pretend it was soooo embarrassing.

Hugs, Siggy

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