May 1st – The First Day of Summer?

This weekend is going to be hot! A predicted 89 degrees ought to sprout anything left in the ground, which isn’t much. I’m going shopping Saturday at our local nurseries with my friend Lisa, who has willingly (!) taken on the difficult task of figuring out which landscaping plants would look good in front of my house. Lisa and Tim’s house is gorgeously landscaped with the most interesting trees, shrubs and plants. I’m certain that her talented aesthetic eye can figure out what will work. We seem to have developed some bare spots out front from the tons of snow that crushed and maimed bushes, and the rest is just chaos, so she will attempt to find some plants that can accent it yet not become another item on the salad bar for the deer.

I’m happy to report that I feel great. It is nice to be back to “normal” for awhile. All the stomach discomfort is gone, and I’m not tired any more. Maybe it is the Yogi Immune Support tea with astragalus that I’ve been drinking? If you have a chance, read about astragalus, an interesting Chinese root. This website at Memorial Sloan-Kettering Cancer Center, http://www.mskcc.org/mskcc/html/11570.cfm, has a search directory (you have to accept a disclaimer to use it) for herbs, botanicals, and other products. It is very interesting; a scientific/medical view of herbs and botanicals.  I’m especially interested in the immune effects of astragalus, which is used in Chinese medicine in conjunction with Western chemotherapy to mitigate its side effects. It will be interesting to see what my blood counts look like on Monday.

For those of you who had trouble signing up to receive my blog, I’ve added a tool at the top of the sideboard that should help. I’m trying to learn all about this techie stuff, or it will leave me in the dust of the last century. I may be the last remaining person in the U.S. who hasn’t yet joined Facebook, but I’m learning all the time. I believe that is my true calling, a professional student. Have a wonderful weekend, and get out those flip-flops.

The Quest

In literary criticism, there is a method to interpret stories by using archetypes. In my book club, when I’m being pedantic instead of having fun, I’ve sometimes talked about the “quest” archetype, which is typically about a young man who goes on a quest to find his destiny, a treasure, or true purpose in life; or to slay a dragon and save the town, or something similar. Along the way, he will find a wise person or guide, an evil entity, a beautiful maiden, and a seemingly insurmountable challenge. In the end, the protagonist learns a lot about himself during his difficult journey to his goal.

I read a book last week called The Alchemist, by Paulo Coelho. It is a classic quest archetype written like a wise fable. I loved this little book, and I highly recommend it to everyone. It contains simple, sweet insights about being true to yourself and your innermost dreams, open to God’s guidance through signs in your life, and simply, in the end, never giving up.

"Tell your heart that the fear of suffering is worse than the suffering itself," the alchemist replies. "And that no heart has ever suffered when it goes in search of its dreams, because every second of the search is a second's encounter with God and with eternity."

I know for certain that I “accidentally” found this book so that I would have its calm wisdom to remember and draw upon. Please consider reading it. And by the way, it would make a great gift for a graduate.

Back to the trenches. Okay, I’ll admit it wasn’t the best weekend ever. The Velcade is definitely doing something. The first thing that it is doing is making me feel like I ate 100 jalapenos, all at once, with a Crystal hot sauce chaser. Let’s hope that is a good sign! For those AL Amy patients out there, prepare to have a stomach ache, lethargy, and a buzzing head every two to three days after treatment. Other than that, no problem! You have to laugh, because being miserable doesn’t help anything. Despite it all, it was a good weekend, and I received a gift of delicious roasted potato leek soup from my beautiful friend, Rebecca. Life is great, and my friends and family are even better.

Earthquakes

The beautiful weather today brought to mind a lovely morning that I spent with Sally in the Piazza del Duomo in L’Aquila, Abruzzo, Italy, in May of 1998. L’Aquila is a gorgeous medieval city surrounded by the Apennine Mountains, full of astounding sights to see.  The air was crisp and cool, and Sally and I wandered throughout the morning market, enjoying our espresso and pastries, soaking up the sunshine and the surprisingly sophisticated yet small-town feel of that city. How can I express the appeal of a spring market day in Italy? Everywhere you look, you see color, color, color: tomatoes, geraniums, bright clothing, umbrellas of every hue, all against a bright blue sky and white-tipped mountains. It was so fun, so vivid, and so beautifully memorable.

Life in L'Aquila changed forever on April 6, 2009, after a destructive earthquake hit. To this day, L’Aquila still stands in shambles. It hurts me to think of it that way. I often wonder if any of the shopkeepers I met were hurt or killed in the earthquake. The masterpiece 13th century church of  Santa Maria Di Colemaggio, the very first church I saw in L’Aquila, was nearly totally destroyed. Chiesa Santa Maria del Suffragio, built in 1713, is situated in the market piazza where I watched swallows swoop in and out of the latticed dome. That same dome split down the side, a huge hole exposing the interior of the church to the elements.

Death and destruction is difficult to reconcile with such a lovely and tranquil place. I hope that someday they will reconstruct the historical center, but the citizens have given up hope that the government will do it for them. Last I read, they were forming volunteer bucket brigades to remove debris from within the medieval walls, which should make them see progress and feel more in control of their lives. Together, with their bonds of community and friendship, they will clear the debris and reclaim their city.

As we all know, life can change in an instant.  I think of my own footsteps treading that fragile fault line in L’Aquila. Most of the time, we walk the fault lines and nothing happens. Year after year, nothing out of the ordinary is likely to occur. You must think that way, rather than worry about the earthquake that might come. Why waste a gorgeous market day?

So, I’ve finished my first course with Velcade and dexamethasone. It wasn’t bad at all, not one bit, even without the anti-nausea medicine! I’m very thankful for that, and for my very excellent medical care. I’ve failed to mention my primary hematologist, Dr. Seth Berk, (Yes, Jen and Dave, Berk!) who I’m so fortunate to have take care of me. He’s a compassionate doctor at the top of his game, a grad/intern of Columbia U./Columbia-Presbyterian Hospital, who completed his residency at U. of Chicago.  Although I’m feeling tired today, tomorrow I can sleep in and rest up. Enjoy your weekend, my family and friends, and I thank you all from the bottom of my heart for all of your kind words, loving thoughts, offers of help, and prayers. You are our bucket brigade!

Fog to Sun

As I drove to work this morning, enjoying music instead of commercials with my new Sirius satellite radio (thanks to my wonderful husband), I passed through some heavy fog, especially near the blueberry fields. I like fog, because it changes the landscape so much. Trees look mysterious, the terrain is shrouded with mist, and everything has a magical, mystical quality. Suddenly, as I passed a large lake, the fog dissipated and sunshine poured out of the sky onto the sparkling water. Everything came sharply into focus. It was a great moment, making my long drive truly enjoyable.

Predictably, the steroids kept me awake throughout book club last night, and beyond! At least I’m getting a lot of reading done. But I feel fine, just with my usual rosy Thursday face. Tomorrow is my last treatment till May 3rd, and this time we will try it without the anti-nausea drug, Aloxi. I’m hopeful we can eliminate that. I’m a less-is-more type of person, so I prefer to use as little medication as possible. I’ll let you know how it goes. (Keep your fingers crossed.)

I want to increase my repertoire of vegetarian dishes, so please email me with your favorite entrée. I would greatly appreciate it! I need protein, but I also have to keep my cholesterol down, so eliminating animal protein will help a lot. Also, if you have a favorite no-salt food flavoring, I would love to hear about it.

I’ve added a few new links to my page that allow those interested to read more about my doctor, David Porter, at the Hospital of the University of Pennsylvania, and the Abrahmson Cancer Center; also, Boston Medical Center, where ASCT (autologous stem cell transplant) for amyloidosis was first performed and continues to be perfected; my favorite blogs; and more amyloidosis info. While reading the scary stuff, just keep this in mind: my sister, Karen, predicts that I will be the poster child for AL Amy remission! Thanks, Karen. : )

All That Glitters...

I had another treatment yesterday, and it went very well. Since Velcade is not your normal napalm, burn-and-blast-everything-in-its-path-type chemo drug, I like to think of it as my own personal PacMan in my bloodstream, cheerily chomping up plasma cells. I do believe there is some benefit to be had from directed imagery, where you think of the medicine going in your body and having beneficial effects. So I picture "glittering" Velcade sliding through my dark veins, chomping on those lurking plasma cells. I guess it is working as my counts are starting to go down. Something is happening, that is for sure.  Now, if only I can find a seat in church where no one will cough on me! But I feel so well, that I practically feel guilty. Other people get so exhausted, so I'm very appreciative that I get such an easy treatment (for now).  This drug is so sophisticated that it is hard to explain how it works. Perhaps I can prevail on my good friend, Tim, a scientist, to give me an explanation in layman's terms for apoptosis? Then I'll post it for you all.  It is way more amazing than flying to the moon!

I just finished reading an inspiring story written by a 16-year and counting AL Amyloidosis survivor (http://sites.google.com/site/curedofamy/Home).  He was in congestive heart failure, very bad shape, and had a peripheral blood stem cell transplant in 1994! He was the 2nd patient known to have this done for amyloidosis. An amazing and inspiring story. This guy has more guts and gumption than any ten people you know.  I hope some of that has rubbed off on me. He has strengthened my certainty that I will do really well with this treatment. Do you know that many people don't get the proper diagnosis of AL Amy for over 2 years? It took my great docs only 3 months. That is going to make all the difference.

I have my book club tonight, and I hope that I can stay awake for it, since the Decadron woke me at 3:30 am. A small price to pay. More treatment on Friday, and then I get one week off for my counts to come back up. I actually look forward to the treatments, as I know I am making progress. And it doesn't hurt that my doctor's office spoils their patients with coffee, juices, breakfast treats and even hoagies for those with strong stomachs! If I stay on these steriods much longer around all that food, I'm going to have to buy some PLUS sizes.  ; )   Later.

Hiking Your Path

I just finished reading A Walk In the Woods: Rediscovering America on the Appalachian Trail, by Bill Bryson.  It is a wonderful nonfiction travel book about ecology, biology, geology, history, and human nature; by turns educational and laugh-out-loud hilarious.  Bryson's original plan was to hike the entire length of the Appalachian Trail, well over 2,000 miles, from Georgia to uppermost Maine.

In the end, he doesn't hike much more than 840 miles of it.  However, as he notes, that is a farther distance than New York to Chicago; certainly nothing to disparage!  And just think: he and his friend hiked that distance in rough terrain and bad weather with a 40-pound pack on their backs.  So, his plan was one thing, his accomplishment quite another; all of which was affected and altered by physical and mental constraints and other unexpected problems.

We all have plans, sometimes vague or specific for our lives.  We expect to see our children grow up; we expect them to be happy, educated and successful.  We expect to save the perfect amount of money with which to enjoy and take care of ourselves; and eventually, with lovely silver hair and riding trail bikes on the beach---isn't that how the commercials show it?---we expect to retire with smile on our ever-so-slightly wrinkled faces turned into the sunset. 

But as Bryson finds out, and I as well, sometimes the path you expect becomes rough or impassable.  Sometimes those obstructions will change your direction, your plan, and perhaps that sunset photo finish.  That is when we must rethink and reroute our expectations.  This brings to mind a saying, although unattributable, that has resonance for me: "Life is a series of dynamic changes.  Resisting those changes will bring only sorrow."

Bryson had to change his plans when unexpected snow fell in Georgia, when terrain proved to be insurmountable, and when his hiking partner was lost in the wilderness overnight.  But he still accomplished so much!  I'll admit it, I have always thought too much about the future.  I'm still quite hopeful that my plans won't change too much, although they have a different feeling to them now.  Perhaps that feeling is the fragility of life and our wispy future plans.  But I'm not thinking about plans and trails now.  I'm truly taking it Day by Day.  It's lovely outside, sunny and bright.  Make the most of it.  Happy trails to you all.

Changing My Life, One Drip at A Time

Today I received the second treatment of Velcade and Decadron. So far, so good. No nausea, due to the diligence of my doctor's office in giving fluids and Aloxi. I did get a particularly bright red face yesterday from the Decadron, just in time for an important meeting at work.  Naturally!  I had to meet several people from out of town, and I guess they figured I was either very hot, very flustered, or sunburned.  Also, I couldn't sleep much the previous night due to the steroids, so I was cruising through the day on 3.5 hours, definitely not my usual sleep standard. However, I managed to get through the day just fine. It is amazing...after all the anticipation of side effects, especially nausea, I have to say that I'm really surprised and happy that I feel so well.  I know that this may change drastically once my counts go down, but for now, I feel great. And I'm so very pleased that my new haircut won't fall out next week.  ; )

My good friend, Debbie M., a pediatric oncology nurse (A.K.A. SAINT) told me to take it just one day at a time. If you think that is just a cliche, try it sometime.  It is the best advice to receive.  So, thank you Deb, that's exactly what I'm doing.  I'm thankful for today, because the sun was shining, I received my treatment, and I'm able to come to work as well.  There are people at the hospital that I've met who have terrible metastasized cancer, or who feel so exhausted. I think of them and realize that although my disease is a bad one, there is always someone who has it worse.

On that note, my friends and family,  happy Friday, enjoy your weekend, and be sure to thank God for your good health. Bill and Pat, have a great vacation!

The First Day of the Rest of My Life

Full Disclosure:

This blog is for my family and friends. It will be very boring for anyone else. I'm not trendy, stylish, or particularly accomplished; therefore, anyone who doesn't know me won't care about what I write.


I have created this information portal for the people that I care about so that they can keep posted on my life without having to call or email. Everybody is busy these days. You may not like to make phone calls. It can be difficult with regional time differences, too. So this is for you, and I hope it is helpful.

This is also for anyone out there who is going through treatment for AL Amyloidosis. It has been so helpful to me to read about other people who have their own travails with this disease, so now it is time for me to give back, too. For what it is worth, I hope it helps.

Tuesday, April 13th: The First Day of the Rest of My Life

The day has finally come. I started treatment (sounds SO much better than chemo, right?) for AL Amyloidosis today at my hematologist/oncologist's practice in a local hospital.  I received Velcade and Decadron, and an anti-nausea drug, Aloxi. I feel perfectly fine. Actually, I think the Decadron gave me lots of energy as I was busy all day and never felt tired. I had to stay up late and read since I wasn't tired at all. I just know I will have to pay for this later in the week!

Hopefully the Velcade will knock the heck out of the plasma cells, and get me on my way to normalcy, whatever that is for my future.  So why do I feel so cheerful about this? I guess it is that I am finally DOING something, instead of waiting for endless tests and consultations. There is nothing worse for me than just waiting and doing nothing about the disease progression. I felt that every day wasted was spent getting sicker. So now...on to progress and healing. No more waiting to get better. I AM getting better, right this very minute.