Mostly Dead

Princess Bride is my favorite movie. In one scene, the man in black, aka Dread Pirate Roberts, is captured and thrown into the 'pit of despair'. Count Rugan, aka 'the six fingered man' and the Prince are conducting research on torture and have built a machine that can suck life out of your body. They start low and suck one year of life from the man in black, reducing him to a quivering, whimpering mess. But then in a fit of jealous rage, the Prince turns the machine to full power, killing the man in black, well, not quite, it leaves him 'mostly dead'.
Mostly dead is what happens to you after 5 days on 100 mg of Prednisone, followed by one day of 40 mg of Decadron (200 mg prednisone equivalent) followed by 3 days of 1000 mg of IV solumedrol (Prednisone equivalent to an "uberdose") I felt wonderful at the wedding and reception, though, as I was lifted by my daughter's beauty, exuberance and infectious smile. But once she an Corey were gone, so was my strength. I gave myself the last dose of solumedrol, at home, in the IV left in me by the nurse.
The next three days, I couldn't move. It required huge mental effort just to get out of a chair. Speaking was a chore, and eating was impossible since everything tasted horrific. Note to self: Avoid high dose steroids in the future.
But then, with a finger wiggle and a head giggle, life began to return. Now, lets inventory our assets.
This all began two weeks ago with a biopsy that showed moderate rejection, the following week it was worse. This concerned my doctors greatly because my anti-rejection drugs were supra therapeutic. Phone calls flew around the country to try to figure this out, meanwhile the only treatment option was to go 'medieval' on the steroids. The Revlimid was stopped on the chance it might be interfering. The jury is still out on that question.
But me, being me, I always expect things to improve and they have. The heart biopsy last week showed no evidence Amyloid deposits, and the heart biopsy this week shows marked improvement with the rejection now at a 1a. I will take a month off of chemotherapy to let my heart get better, and then, who knows? I am still on bolus Decadron weekly on the chance it may keep the amyloidosis at bay. My Kappa Light Chains (amyloid marker) remain low.
Many questions remain, however. Was it really the Revlimid that caused my strange rejection? Was it an occult infection, masked by steroids? Was it the economy or election season hysteria? I am sure my doctors must see me as two people since I am a paradox. But then, I have always been unique. But I don't worry; if not plan B, then plan C and eventually on to plan 401K.
In the end, I am always aware of the sincere support of so many on my behalf, this makes the bad days bearable and the good days glorious. I haven't written recently because, well, I was mostly dead, Miracle Max did offer me a cure, but it took a while to swallow, as the chocolate was still quite unpalatable. Today, chocolate tastes wonderful, and that says a mouthful.

Glad to be among the living.

Kevin

If you haven't seen The Princess Bride, it is worth watching.

Rebecca and Corey's wedding

A Dance with my Daughter

Life is measured in events. Albeit, these events are rare compared with our day to day activities. But these are what we remember, mark and measure our life. These events can be seen as islands on the horizon in the ocean of time on which we spend most of our days. We float along daily in the glistening ripples and waves of daily activity, the forward movement almost imperceptible as we sleep, eat breakfast, answer emails discuss the calendar and talk and listen and do 95% of what our lives really are. These moments are critical, but seem mundane. However, the big events are both behind us and ahead, a reminder of what we have accomplished or hope to do. The islands in our ocean fade into past memory and appear anew on our horizons: Birth, death, prom night, 1st football game, a major illness, a family vacation, a promotion, new job, new house. As a parent, they are an inevitability. Someday, your children grow up and leave you. You prepare them for this their entire life, but it is always bittersweet.

As a father, you hope and pray that your daughter falls in love with a good man, a man better that you are, one who will respect and care for her, but as she dates, you give up hope. Then one day, she comes home with a sparkle in her eye. This is different. This young man is not like the rest. You meet him and he is was she needs and more. Suddenly, on the horizon, a distant peak of an island becomes visible for the very first time and you feel the currents pushing you toward that inevitable port. However, almost simultaneously, storm clouds begin to gather obscuring the view and the way.

On June 13, 2008 Corey proposed to Rebecca. Corey included me in his plan to surprise her and it worked beautifully. She accepted and the date was set for October 25th. Ironically, that same morning, I finally found out my diagnosis of what had kept me ill for two years. I had restrictive cardiomyopathy. A week later it was determined that this might be due to Amyloidosis. Further investigation was disheartening as the prognosis was bad and the course of action unpredictable. The storm clouds descended and the waves begin to carry us off course. With two of our children getting married in the near future, it was difficult to know what to do. Samuel and Michelle's wedding was only 2 months away, while Corey and Rebecca's was in four months. With a open-ended work-up in Rochester MN, inpatient status in Santa Clara and waiting for the elusive new heart, could we make a course correction in time to share these cherished events. To Sam I said, "I'll do my best to be there." It was not to be. But to Rebecca I promised, "I will dance with you at your wedding." I meant to do everything in my power to keep that promise.

We arrived at the appointed date last Saturday. The beauty of the morning was only exceeded by the beauty of Rebecca. Her smile and unabashed joy kept us all afloat. The wedding was a dream come true. We all arrived, family and friends at the reception where she floated around the room in her white dress with such grace and poise. Then the moment came. I danced with my daughter.

I took her in my arms, as I have done for 20 years, and carried her around the floor. She told me not to cry, but the emotion was overwhelming. We reminisced how she used to stand on my feet when she was two as we danced around the family room. She loves to dance. I told her how much I loved her. I always will. But now begins her time to dance with another. And I am so happy that she has Corey. A fathers' greatest desire, to give his daughter to a man worthy of her love who will care for her with all of the loving attention of her Dad.

The dance with my daughter was done, the event now fades into past memories, the promise was kept. As I look back, this island paradise will remain in view for a very long time. The ocean seems a little bit more calm today and my vision seems to extend a few more miles than usual.

Congratulations to Rebecca and Corey

Trailblazing

For years I enjoyed hiking on the Appalachian Trail from New Jersey to Vermont. The trail in New England was almost entirely through forest and it felt like you were walking in one endless green tunnel. This made it very easy to get lost. In order to recognize the trail, the trees are marked with white rectangular blazes or trail markers. I can imagine how difficult it would be to navigate the trail without them. I also wonder what it might have been like for the first person to pioneer this path. I am sure they fell into false and difficult trails and had to double back, losing precious time.
I feel this way right now. since Stanford hasn't treated an amyloid patient after a transplant in many years, it is unknown what the chemotherapy does to the new heart. Just as well, my doctors in Santa Clara are experts at protecting the transplant, but have not taken care of an amyloid patient either after transplant. They were all very concerned that my rejection did not resolve after two weeks of intensive intervention. Yesterday everyone was talking from Santa Clara Kaiser, Standford and the Mayo Clinic. The questions involved drugs levels, drug interactions and ultimately one pharmacist suggested that Revlimid might increase T-Cell activity and IL-2 levels. This would have a direct toxic effect on my heart despite high levels of anti-rejection drug activity. This was unexpected as the usual literature doesn't mention this. This trail blaze was missing.
As a result, I have stopped the Revlimid for now and am again on high dose steroids in the form of an IV infusion of Solumedrol for 3 days. I imagine that within a week this will all resolve and I will be back on the correct path. I guess someone has to blaze the new trail. It will be more clear for the next person who follows.

Kevin

Flexibility

I haven't written in a long time.  I had planned to write this morning with the title, "I miss my husband."  For the past 1 1/2 weeks he has not felt well.  Because of that he has been moody, fatigued and over all not himself.  It has made life at home unpredictable.  We had an amazing few weeks when we got home from Santa Clara where he felt great and was ready to go back to work, wanted to travel, and write.  And then he started Revlimid and Decadron for the amyloid.  Whether it is related or not we don't know for sure, but heart rejection began.  That may be why he has felt so incredibly crummy.  

My post this morning would have been before more news today from the transplant team.  Sue Murray, our transplant coordinator called with results from Kevin's heart biopsy this week indicating that it showed the same rejection as last week.  I was sad that the increases and changes in his medication had not helped, although his labs showed high levels of his cyclosporine.  There is reason to believe that possibly Revlimid is causing rejection based on T-cells.  Kevin will explain this much better than I ever could.  What it means to me and us is that he may need to be off Revlimid until they know more or can figure out the cause of rejection and stop it.  For how long, we don't know.  A good thing is that the heart biopsy also showed no sign of Amyloid on his new heart.  So far this heart is undamaged by the disease. That is great news!! 

This afternoon, while I was busy with Rebecca and Caitlin doing girly things for the wedding, Kevin needed to go to Kaiser Roseville to receive an unexpected infusion of Solumedrol.  Based on his rejection this week, he will need another infusion tomorrow and the day of the wedding, following the reception.  Just when we thought we were moving along smoothly, this happens.  It's another reminder that not everything in life goes as planned.  

We are well.  He will be at Rebecca's wedding.  Our boys and their spouses will be here.  And that is all we can ask for at this point. 

As far as having my husband back, I think next week he should start feeling better.  At this point in time, it is hard to know exactly how his body will react to drugs, when he will feel good and how much energy he will have at any given time.  I'm grateful that somewhere in my life I learned to be flexible.

Barbie   

Changes

It has been two weeks since I have started the chemotherapy for the Amyloidodsis. The Revlimid, which I take daily, does seem to have noticeable side effects. The high dose steroid does cause the usual insomnia and weird taste in food, but it also gives me intermittent hiccups. Of note, however, my heart biopsy on Tuesday did show moderate rejection (2R, on a scale of 0 through 3R)A large percentage of patients will have this in the 1st six months. This is also treated with high dose steroids, so in addition to the Decadron I take weekly for the Amyloidosis, I am now on 100 mg of Prednisone daily, but with a rapid taper. They also stopped my Cyclosporine because even a supra-therapeutic dose was clearly not protecting me. I am now on Prograf, a different anti-rejection drug. I also got a call this evening that my Cellcept levels (another anti-rejection drug) were too high, so as of this evening, I drop the dose of that drug as well. There have been lots of changes this week.
I did have symptoms associated with the rejection, low blood pressure, a fast heart rate and severe weakness, often when I would stand up I would get very light-headed. That has improved in the last two days since I have been on the high-dose steroids.

More importantly, I have recently discovered a really good pizza place here in Rocklin, Gaetano's New York Style Pizza. I went there once back in March of this year, but later that night I had a mini-stroke and couldn't see out of the right side of my visual fields, I ended up in the hospital for two days. Since the heart transplant, and now on an aspirin a day, I felt it was safe to return. It is actually fairly authentic New york style pizza and probably better than a lot of pizza you actually get in Manhattan. You have to enjoy the simple pleasures, whatever the risk.

We are so excited about the upcoming wedding next week. Rebecca and Corey are so in love. It will be a wonderful day.

Kevin

cabinets and recipes

When we lived in San Diego I had a friend named, Susan Neil.  She talked about the amazing talents of her husband.  He was a talented painter.  He could sing well and play the piano.   All this he did while finishing his training as an ENT.  She spoke about the fact that all his talents were seen by other people, but hers were more quiet, not as noticeable by others.  As she spoke of this (not as a complaint,  just an observation) she mentioned her cupboards.  She said anyone could go into her home and open a cupboard or cabinet and everything would be in order, neatly folded, stacked or placed.  At the time she had 3 young, adorable, girls.  Kevin and I (as newlyweds) sat for them so they could have a quick get away.  We stayed at their home and they stayed in our humble apartment.  They since had 4 more girls, I believe, and now have a few grandchildren.  I thought of Susan this week as I cleaned out my kitchen cabinets.  I even moved the glasses and cups to a new location and the garbage can as well.  We all haven't gotten use to it yet, but the move made more sense.  It feels good to know where everything is and be rid of items someone else could use.  I've moved on to a couple other cabinets, but still have a long way to go.  I haven't started the food pantry.  Too much to go through just yet.  

                        

As my nesting continues, I felt the need to preserve something from my garden.  The only thing I had enough of and worth saving was my basil.  I decided to make pesto sauce.  At first I didn't think it would be worth the money since pine nuts can be expensive. But I found some at Walmart, 5 ounces for $4, and my recipe only calls for 2 tablespoons of toasted pine nuts for 2 cups loosely packed basil.  I used Mark Bittman's recipe from "How to Cook Everything".  I've  made three batches so far.  So that we could use it in small quantities, I poured the pesto in ice cube trays, froze them, popped them out of the tray and sealed them with our "Food Saver".  Now we have pesto for sandwiches or for a whole pot of pasta.

Today Kevin didn't feel that well.  He just felt overall weak and tired so I started a new project.  Organizing my recipes.  It's time to say goodbye to my recipe box from 1982, or is it?  I've been reading ways to organize.  I've started by typing in my recipes from years ago (our early married years) that I just can't part with.  I could scan them, but 3x5 cards written back to back are just as easy to type in.  I'll scan those cards that I just can't part with the handwriting from good friends and family.   I have a lot of recipe books.  I can't part with them either.  I know I can get so many recipes on line now, but I love browsing through the books and making notes of what works for us or what doesn't.  To organize those recipes, I read to create a recipe index.  Write down the name of the recipe and where to find it.  I'll start that as well.  Probably in a word document so I can search by ingredient or type.  If you have any other ideas, let me know.   

If this were Kevin's blog he would bring it back to talents, hidden and influencing you to find yours and get it out of a 'cabinet'.  Since my blogs entries are random thoughts and not arch essays, I will just say, find your talents and share them.  I had Kevin read this.  He laughed.  

Barbie

Impressions

I remember the first time I went to the Chicago Art Institute. I was captivated by the collection of art from the impressionist period. I find that I have always been drawn to art from this period. My favorite museum in Paris was the Musee d’Orsay which housed a magnificent collection of pieces from this period, Manet, Monet, Van Gogh, Serrat, Renoir and many others. Someone once described impressionist art to me as the image one might notice in your peripheral vision as you were passing by a scene. It is a moment in time, more of a glance, out of focus. This is embodied in a painting by Manet (Gare Saint-Lazare) in which a woman is sitting on a street bench as a train is passing; a mere glance by a passerby.

I realized that this reflected many moments in my life in the past. With so many duties and distractions, many moments passed by in a blur. Moments that should have been the focus of my attention. Sometimes I would sit a basketball game or piano practice of my daughter and instead of focusing on them; I would be playing a game on my Palm organizer. The game or music would be seen or heard, but the essence was missed. I had so many responsibilities, that even when I was with someone, I would feel anxious to move onto the next task or item on the schedule, not giving them my full attention. This was the impressionist period of my life.

This changed as I begin the period of illness whose symptoms can only be described as classical. The problem was that these symptoms individually were all common to other benign conditions and were easily dismissed as indigestion or de-conditioning, fatigue, poor appetite, difficulty swallowing, hoarseness, unable to walk up a flight of stairs, stomach upset etc… Taken together they were classical for Amyloidosis. But who has ever heard or thought of amyloidosis? It would be like hearing a piece of music from the composer, Ernst Wilhelm Wolf, the style would remind one of the classical period, and it could easily be ascribed to Mozart or Haydn. So it was with me.

The diagnosis was finally made and my life then can only be described a surreal. To different realities juxtaposed; Kevin, the guy for whom everything always worked out, the lucky one, was now facing a fatal illness, incurable. It was difficult to grasp. Everyday revealed a new detail which altered the path in many directions, Roseville, Sacramento, a pleural effusion. malnutrition, edema, a cardiac output with half the normal flow. How was this possible? How did I minimize my symptoms so much that I did not see it? Santa Clara, a biopsy is done; Amyloidosis, then to the Mayo Clinic for exhausting studies, back to Santa Clara, Dopamine, Lasix and confinement; Hard decisions and finally to Stanford for a heart. And so on. I realize that all of this may seem rather abstract, but helped me to see what I had been missing.

The one true thing, the constant reality in all of this was Barbie. I never feared dying or pain or anything. The only fear was leaving Barbie alone. I relied on her, not only for emotional support, but for the first time in our marriage, for everything. She drove, she shopped, she lifted the heavy stuff. But, whenever we had a moment alone, we began to realize how strong our love really was. There were some tender moments so sweet, so powerful, that they changed us forever. Thus began my romantic period. Form and function folded into feelings. I see the color and emotion more clearly. And the recurring motif is gratitude.

Now when I go to hear Caitlin in her piano lesson, my Palm remains in my pocket, no games, no distractions. I want to focus on the music. I not only hear the notes, I can feel her essence expressed through the medium of the piano. If she makes a mistake, I don’t notice it. The dynamics, the rhythm, the passion is all I hear now. And it is so beautiful. Things are so much more in focus now. I hope that I remain in this Romantic period and never again experience life as a passing glance.

Strength from others

I feel quite nested now.  As we spent the past few days grocery shopping & cooking, preparing for our open house, I was reminded how happy I am when I am in the kitchen cooking for people I love.  We were pleased that so many were able to stop by and share in our joy with good food and good company.  I am a much better one-on-one communicator so my only wish would have been to have more time with each person individually.  Maybe there will be time in heaven for that?

The best part about the preparation was viewing our church conference on television.  Twice a year our leaders meet in SLC and televise a 4 session conference.  We are fortunate to watch it at home through our cable network.  I remember years in Connecticut getting dressed up and taking the children to all 4 sessions, two on Saturday and two on Sunday at our local chapel.  It was a wonderful but long weekend for children.  To watch in my own home while making brownies or just sitting down to listen of our leaders testimonies of Jesus Christ is inspiring.  

My sister, Kathie came for the last session of Conference and helped me with final preparations.  She worked clear through until the last person left, washing, refilling plates and drinks and all those things that are done behind the scenes.  I am grateful to her - she worked very hard which allowed Kevin and I to visit with friends.  Thank you, Kathie.

As Kevin stated on Saturday, we received beautiful handmade quilts from some of our friends in Connecticut.  Woven of love and prepared from those with busy lives, we feel grateful once again.  We displayed them for the open house for others to admire.  When we are filled with the spirit of love we have a tremendous need to help others when they have burdens.  We have received so much from so many of you, some in words and some "things" to make us smile or make our life a little easier.  Thank you for sharing your hearts and your wisdom.  I feel like it is time for us to 'give back'.  

Our life is richly blessed.  Kevin's heart is beating tremendously well.  We are surrounded by people who give us strength and encourage us to be better people.  He tolerated his first dose of Revlimid well.  We are hopeful this will work.

Barbie

Open House

It was wonderful to visit with so many friends and family at the open house last night. I am especially grateful to my sister-in-law Kathie for all of her help and support. Even though we were only away from home for two months, it felt longer making a reunion, of sorts, that much more enjoyable. It was a beautiful evening in October.

Kevin

Heart of Friendship; Surgeons and Seamstresses

We received a gift today from our dear friends in Connecticut. Two quilts, meticulously and lovingly created. As I warmed myself with the heart quilt, (I assume that one was meant for me) , I noticed the intricate pattern of black stitching that created an endless array of hearts, all connected by a single thread on a background of of heart-infused fabric. It reminded me of how friendships are similar; hearts woven together by common experiences, goals and memories that become the tapestry of our lives. I couldn't help but wonder at hours of effort and love that went into creating these works of art and remember the years of joy that we spent with these friends: Judy, Jeanette, Heather, Linda and Lynnette, and so many others. It seams like our hearts will also be forever joined by a single thread.

Then a thought emerges as I realize that a surgeon's thread is what binds my new heart to me. You hope that it is strong and will hold.

Time passes and distance separates us, but the rich memories that we share can never be erased. They will keep us warm as do these quilts.

Kevin

Directions

We look forward to seeing those who can make it tomorrow for the open house at our house at 6:00 P.M. For those who can't, are gratitude is extended to you as well and we hope we might have an opportunity to thank you personally in the future. Of note, Sierra College Blvd is a better route to our house than Hwy 65, as we live closer to the east end of Twelve Bridges Dr. Please the the Map Link below. There is a gate, you can call us from the gate or at home at 916-543-3299

View Map

Thanks,
Kevin

Chapter III

Today begins the next chapter in this saga. Every story has a beginning a middle and an end. Since this is written in present tense. I am forever in the middle. The end (which will be far into the future) is for another day.

We saw Dr Schrier on Monday and he recommended that I start on treatment for the amyloidodsis. This is sooner than I expected, but I am excited to finally attack this 'bad boy'. He didn't find any other significant areas of involvement with the disease. The plan is to use oral chemotherapy with Revlimid and Decadron. Revlimid is a new drug which is similar to Thalidimide (a very nasty drug that caused birth defects in the 60's). It has been used with good success both with Multiple Myeloma (the plasma cell cancer that my Dad had) and amyloidosis. I will also take Decadron, a very potent steroid, (like super-prednisone).

Once again, my case is unique in that they usually don't treat patients after a transplant, so they are starting at a low dose because of all of my other anti-rejection drugs. It's fun to be the 'Guinea Pig'. If the medications don't drop my protein levels (kappa light chains) to normal. Then I will still need a stem cell transplant. Of course, we are hoping for the best.

One downside of this is that the folks that make the blood test for rejection (Allomap) don't know how the Decadron will effect the test so they don't want me in the Allomap program, which means more heart biopsies. Which to me is a small price to pay if the meds help me.

My friend, Debbie, is doing very well after her transplant and is waiting to see how they treat me so she can follow in the same path.

I am feeling so much better and walk 2-3 miles a day. I get stronger every day. I plan on remaining in the middle of this story for some time. The story's end will have to wait for another day, and probably another author, hopefully one of my grandchildren.

Kevin

October

It's October and although California's fall is not Connecticut's fall, I love it still.  The air becomes crisp, leaves change colors, and nature prepares for winter.  This is my favorite time to run.

Our trip to Stanford to meet Dr. Schrier went well.  He would like to start Kevin immediately on Revlamid and Dexamethazone.  Both are oral, once a week drugs.  He'll start with 10 mg of Revlamid and then increase to 25 mg.  Dexamethazone will be at 40 mg.  It means more side effects to deal with.  Yesterday we met with the Kaiser team and because of Kevin's high dose of Dexamethazone he will not be a candidate for Allomap.  The team was really hoping to have him participate in this new test, but Amyloidosis changes things.  The Dexamethazone will have an effect on the result.  It's unfortunate, would have been more convenient, and limit the amount of biopsies, but right now treating Amyloid is crucial to save this new heart from damage.  

We both came home a bit exhausted yesterday.  Part due to the long appointments Monday and Tuesday, the long drive, and the reminder that we are not close to being done.  

Barbie