The Amyloid Adventures

Epilogue

2011-04-10T04:30:00.001-07:00

I have created a new blog called "Culture, Law and Politics" that can be found at:

http://culturelawpolitics.blogspot.com/

Hope to see you there!

Spring Charm

2011-02-16T05:26:00.000-08:00

Whatever the groundhog saw or not this year, spring is coming early. The first chickadee of the season is singing outside. The first snow inspired my last blog; the bird acts as a muse for this one. And I should tell you that with the shared news of Denise's and my wedding last summer and with posts last March and June, we have come a full year around the seasons with no new significant medical reports. For this blog, and for reasons which I shall detail below, this will be my last post.

It has been almost two and a half years since the neurosurgery and two years since the first visit to the Boston Amyloid Research and Clinic Program. I have learned a great deal about protein related disorders since then and keep my eye on this dynamic area of medical research. With a confirmed case of MGUS (me a a zillion others), I will personally be sure to have the type of blood test that looks for further elevations in lambda light chain proteins, an indication for any number of disorders from amyloidosis to the statistically more likely multiple myeloma. I can be grateful for the potential head's up on that one, even if I hope the information does not pay off ever, but if ever, many, many years down the road.

I still have pain. In two weeks I am going to the ENT doctor in Ithaca who cared for me after the surgery, Rob Strominger, to explore nerve blocks. I had one back in the immediate aftermath of the surgery and it worked to alleviate the pain as long as the lidocaine was active. Although it makes that side of my face numb, just like when you go to the dentist, it does take the pain away for that period. It is like a wave of relief to have that experience, and I would like to see if that could be done routinely.

Because I did not have a stroke, nor do I have Bell's Palsy, whose effects are observable, most people do not know that I experience pain every day, from at least noon until bedtime. Those who do know I hope forget about it, or at least that is what I try to do. Distraction is a great medicine. But the truth is the nerve damage bothers me every day, only the degree varies. The neuropathic drug I take, Lyricia, has helped, but unfortunately with the notable side effect of weight gain. Alas. For that path, I see no end in sight.

But the amyloidosis feared at the outset over two years ago has not materialized. The Boston hematologist set two to three years, but Dr. Law does not see it and I don't feel it going that way. From our lips and hearts ... At the clinic, I did see some people very ill with the disease. Last August, one man died in the waiting room of the clinic, where I had seen him sitting only moments before I was called into an examination room. Make no mistake: this is a very serious and, when not diagnosed in time, deadly disease. It deserves enormous attention from the medical community, and many be part of a number of protein related disorders that have connections to everything from dementia to cancer. It just does not feel fair to those who endure the treatments and suffer its debilitating effects to continue a blog under this name when the worst fears of it have passed over our house.

So a couple of final thoughts. First, with respect to my creative writing endeavors, such as they are, in this blog, I hope that for those who seek straight medical information -- my original motivation for the blog -- they have not been too distracting. Also, a specific note related to my last entry: I was not writing about my father, but the fathers of many schoolmates. (My father, who as the owner of a restaurant drank almost all day, I saw affected by alcohol only about three times in my entire life -- it made him jolly; and while he had a hair-trigger temper in the kitchen and could be physically combative -- mostly with policemen -- he was never violent with me.) Second, for those who have followed my blog out of friendship or family love, know that I love you right back and am here for you in your time of need. Finally, having come full circle, and loving the written word, I would like to finish with a spring remembrance.

I grew up on the west side of the city of Rochester, near the canal, the railroad tracks and the airport. Some of my fondest memories revolve around those first nights of spring when we would open the windows. Up would go the main window, out would come the storm window, in would arrive the screen, and I would be allowed to go to bed with the cool -- but not cold -- air streaming into my room. Never mind that it smelled like jet fuel, or that the sounds that sung me to sleep were those of the whining plane engines on the runway. Those sounds blend together with the hours that my father and I spent on the observation deck at the airport, ice cream cones in hand, watching planes come and go, each one a minor miracle of levitation. They crest around the time I was six when my father took me on my first plane ride: a jet to Buffalo -- it took ten minutes -- and then to the zoo there, back home again, just for the sake of the ride. These memories are like postcards from heaven. If I can create for my children just a little bit of the magic that my father created for me in this life, I shall have done a good job.

God bless.

The First Snow

2010-12-05T06:44:00.000-08:00

The first snow. I am not immune to its charms. It brings back cherished memories of building snow tunnels, walking to school on the top of the banks and shoveling endlessly with parents and neighbors and childhood friends.

One late afternoon stands out in particular. It was the last day of school before Christmas break. I stay after to help my teachers erase chalk boards but mostly to talk with them, to soak up their magnanimous authority, which I squirrel away in my heart to be summonsed when amidst the duller spirits that can arise at home. It is the first snow of the season, late December, and as it always seems to do, the snow brings a hush to the city. Already late, the sun is down, a luminous twilight hovers over the neighborhoods through which I walk the mile home. I am at the top of my street, two long city blocks of what once stood for the best of the mid-century's middle class, but is already ever so slightly turning into a dark night of poverty, crime and want. That is all in the future. This experience was truly in the moment. The snow is falling softly. I decide that my best view is taken while walking down the middle of the street.

An eleven or twelve year old Catholic school girl, in uniform, suspended between school and home, alone, gloriously alone for a few minutes that are neither a nun's or a priest's, a mother's or a father's, no matter what is good or bad about any of them, this is a young person's moment to be alone, safe, quiet, and slowly sucking on a piece of the sweet Christmas candy that we all waited for every year as if it were a pot of gold, all the love in the world, the nourishment needed to sustain us through confessions and masses, multiplication tables and spelling bees, the sting of adolescent gossip, the dictation girls took from obedient mothers and blows boys absorbed from abusive and often drunk fathers, and for one night in the first snow of the season, it was all beautiful.

My NYT Op-Ed

2010-11-09T06:08:00.000-08:00

That never was ... but if it had been, this is what I would have said on the second year after the neurosurgery:

Two years ago today I had ten hours of neurosurgery at the University of Pittsburg Medical Center. For two years prior I had numbness and tingling on the right side of my lip and chin. The symptoms were perfectly asymmetrical, and as the numbness progressed down my chin an imaginary line separate the left side, which was fine, from the right side which grew increasingly more numb. When a MRI diagnosed a "schwannoma," a fatty benign tumor, on my right trigeminal nerve I choose UPMC because of their pioneering surgeon, Dr. Amin Kassam, for the endoscopic (via the nose and sinuses) approach to the Meckel's Cave region of lower brain -- perhaps the most difficult area of the body to access given its interior location and juncture of spinal chord and brain stem.

Ten days later pathologists discovered that instead of a schwannoma the biopsied tissue revealed amyloid. Usually enthusiastic, Dr. Kassam presented this information to me in a somber tone. I had never heard of such a thing and asked him to spell it! He then suddenly headed for the door and said, "Go home." "To my apartment?" I asked, the one we had taken in Pittsburgh for a three week recovery period. "No, Ithaca."

That night I search the Internet for this strange term. Alzheimer disease rose to the top of the searches. Over and over again I read about proteins unfolding, burrowing into the brain, forming plaque and destroying the tissue. Common knowledge taught me that doctors diagnose the disorder from symptoms not tissue because no one has a brain biopsy. Except me, almost sort of. It turns out that the amyloid on my nerve consists of a different type of protein, a lambda light chain, produced by plasma cells and which lead to another protein-related disorder, amyloidosis. I have since learned that there are numerous disorders for which proteins are implicated.

In light of President Obama's pledge to find a "cure" for Alzheimer's it may be important to recognize that this disease is not alone in the constellation of protein disorders. Medical researchers already recognize Lewy Body Demetia in which plague affects the lower brain steam. That disorder may have a close relationship to Parkinson's Disease given the similarity of symptoms involving motor control. Owen Thomas's tragic death has also thrown a spotlight on amyloid deposition believed to be related to traumatic head injuries. The entire National Football League grabbles with the consequences of head trauma on its most distinguished players. I could not authoritatively say how many other recognized diseases exist directly involving proteins, but simple Internet searches reveal many strange and unusual names.

Protein disorders in general require the kind of public support and attention that we have given cancer and AIDs in the past and now, as us baby-boomers grow older, Alzheimer's. Not only do we need financial support for the research and clinical trials, but a coordination of these efforts in such a way to connect the dots of these various disorders to create new diagnostic tools and treatment protocols. That the need exists is clear to me. Months after the diagnosis in Pittsburg I went to the Boston University Amyloid Center for a follow up, which I now do annually. When I was there this past August a fellow patient died in clinic's waiting room.

Thanks, Georgia, for writing, here are some pictures!

2010-09-07T12:41:00.000-07:00

Moments before the ceremony ... I lost my son, Nikko, on Commercial Avenue in P-town, looking for a table cloth and had to rush back just in time to the site!

With Denise, here are our boys, Nikko, and Sam, shaking hands with our priest, Terry Pannell of St. Mary's of the Harbor who officiated.

And here is our wedding party all together!

Results!

2010-08-22T10:58:00.000-07:00

The results from the Amyloid Clinic at BUMC where I went again for a battery of tests early last week are in and good! The increase in lambda light chains in the circulation noted this spring turns out not to be significant; the bone marrow appears steady too. That means that there is still an imbalance. Too many lambda plasma cells are creating too many lambda proteins that go out in circulation, but there is no change from what was discovered after the neurosurgery in November of 2008 and subsequently for tests at BUMC in February of 2009. Hurrah!

The BUMC doctors did recommend another MRI, which I will have sometime this fall, to see if the amyloid has grown in size or is affecting any other nerves or tissue in the area Lyrica still has more of a salutary effect than any other neuropathic medication I have tried for the trigeminal pain. Living up to its reputation, Lyrica also has the unfortunate effect of changing brain chemistry that slows down metabolism, hence a much unwanted weight gain. I am going to try diet and exercise to chill this deleterious. I needed weight gain like a whole in the head! (Did you parents use phrases like this one? Mine did, and they come in handy sometimes!)

Denise and I were married on the anniversary of our blessing in 2003 this month, on August 9, at a quiet ceremony in a lovely garden on Commercial Street in Provincetown, MA. We would have like to have married in New York, but the disappointment of the state legislature earlier this year put us in a mind not to wait. The Rev. Terry Pannell of St. Mary's of the Harbor officiated. I am very glad to think of him now as a dear friend.

Nikko is off to school soon at RIT; my friend Norma at NYU, a parent too, suggested one thing: bring kleenex.

Sam is starting high school this year in Ithaca. I am encouraging him to run for student government because he is very social and has lots of friends and opinions too!

For those inclined to meditate or pray, I thank you all for that which you have offered me. Please include in that vein the doctor's at BUMC. Many of them, and Dr. Rosemary O'Connell in particular for me, are living saints, people who dedicate themselves with skill and compassion to the ecology of this disease. Please also think of those with amyloidosis in a far more dangerous presentation than mine. On Monday at BUMC, one patient in our "class" (which is every Monday when people come from around the country for the standard battery of tests, support group and general getting to know each other and the families) died in the waiting room! Others are struggling with different stages of the disorder and its effects on vital organs. But there is hope: One man there, perhaps in his 40's, reported that he is 11 years out from a stem cell transplant. He looked great, had a lovely and loving wife with him and two beautiful children!

Been a long time ...

2010-07-13T12:06:00.000-07:00

... since I have posted; many distractions emerged along the way. Most significant is a decision about a position in California. I spare my friends and family the details that would not be interesting. What I want to share is how I came to the decision. Largely, it was through friends, tremendously kind and deeply thoughtful people who were willing to dive into the many issues that came into play and work through the discernment with me. The denouement came magically.

Herons have long held a spiritual, some may say superstitious, grip on me. When I was pregnant with Nikko through the fall and early winter, I would drive to Syracuse to visit my doctor. I had chosen to go to Syracuse because the doctor was in a solo practice and because the hospital where he had privileges contained a neonatal unit. As most of the readers of this blog know I have a brother who half a century ago was born very prematurely and suffered severe brain damage as a result of the consequences, and, at that time, underdeveloped understandings of those conditions and few genuinely salutary assistive technologies. Not knowing the reasons for my mother's premature labor I thought that the least I could do was to be sure that if it were my condition too I would be at a hospital that had the facilities to take care of the baby. Hence, every few weeks I trekked through Route 366 along Fall Creek on my way to the Interstate. And when I saw a heron I interpreted that sighting as a sign that everything was going to be okay. Nikko was born with 10/10 APGAR rates exactly on his due date in late January.

It is no wonder that over this weekend, after I had taken the boys with me to California, I retreated finally to one of my cherished locations on the planet: Upper Buttermilk State Park, not .2 miles from my house and where I have hiked frequently. The day before, Friday, had seen much rain, breaking a record heatwave, and so the marsh was unusually full. That circumstance might explain why there stood at its edge a heron as I happened by. Denise was with me, but in the mood for a power walk, I invited her to push ahead. I stood for some time, silent, unmoving, watching the heron. Looking for a sign.

Those who know about or have watched herons recall that they are a model of poise and patience. They can stand in leg deep water motionless for a very long time until one svelte strike at something of the fish or amphibian species. If you are not watching consistently, you will miss the move because it happens so quickly. Apart from a swallow, the bird hardly alters its position. Unlike other species -- mammals come to mind -- they don't dance around and make of show of their victory. If they did, the second, third, and on infinitum victim would undoubtedly be alerted to the danger and swim or jump away.

I walked on. When I met up with Denise, she asked if the heron had a message. "No," I said, "it just kept fishing." On we walked, and on we talked together and then later with Carrie who has been especially helpful all along the way. By the end of the day Denise and I weighed factors and explored feelings and priorities. The next day I returned to the park (Denise having gone back to Rochester for services on Sunday) and again the heron performed the same way. That night a conversation with my friends Annemarie and Meredith (from Hawaii) stirred my thinking. I returned early in the morning the next day. There was the same bird, just standing. I had another friend on my mind, someone who had recently written me by email of the very unfortunate and unexpected death of his beloved wife of over 50 years. I had responded to his email. I had informed mutual friends and colleagues, but because I was so overwhelmed with the job question I had not done as much as I had hoped to in order to acknowledge his grief. While in California I had thought of him often and had decided on exactly the one card I wanted to send him. I resolved to quicken my walk to write him.

I wrote from a thin place, the metaphorical name for a state of being closer to a spiritual sensibility than the world that is too much with us usually provides. I started to tell him about the job but quickly turned to the bird and when I related my conversation with Denise on that first day, the meaning became clear (as it probably has for you already): keep fishing.

I have just returned from my fourth consecutive day walking around the trail around Upper Buttermilk. Even though it was sunrise, the usual heron hour, the bird was gone. That's okay. I have my decision. And most important, a meaningful network of family and friends and community.

Back to Boston: BUMC Amyloid Research and Treatment Center

2010-04-09T08:58:00.000-07:00

Remember the propitious results of the October test? A chimera. And a lesson. Blood test must accompany the urine. The lab did not have the order for blood work so they did not do it. The little lambda proteins do not always show up in urine (although more complex proteins will in the case of kidney malfunctions).

Tests last month revealed higher levels of lambda proteins than last year. Higher numbers of those proteins throw the ratio between the two light chain proteins, lambda and kappa, in inverse proportion; ideally, they should be 1:1. That I have monoclonal gammopathy of undetermined significance (MGUS) is clear. To the Pittsburgh pathologists it is clear that I have an amyloid on my right trigeminal nerve. Whether these proteins have attached and "unfolded" on other tissues or organs is why I will return to Boston for more tests.

When I forwarded the results which came from tests I had done here in Ithaca (but which are sent to Mayo Clinic for analysis) to Denise, she responded, "I see a fat pat aspiration and Boston in your future!" Ah. Along with transubstantiation, Denise has taken on powers of prognostication! Jokes aside, Denise will come with me, thankfully. The bone marrow aspiration is fairly invasive, the fat pad aspiration (on the belly) less so, and the other tests, such as gastro-intestinal or echocardiogram, either less so or not at all. More important is the comfort of love and the joy of her company.

I remain on the lyrica for pain. It helps, but at the cost of some resistant weight gain and less tolerance for alcohol. The latter is probably a blessing, although in the scope of things ultimately not as important to me as it used to be. (I can't taste wine like I used to be able to because of the tingling and numbness on the right side of my tongue.) What remains important is keeping the pain at a dull roar so that I can engage with my family unencumbered by the irritation and emotional drag that pain creates and continue to be productive at work too.

Last February, Dr. Sloane predicted that I would need a stem cell transplant in "two to three years." Of course, there is some probability for never (at least for this immediate purpose) and some for sooner. I always have joked with Denise, long before these medical events and borrowing a line from a Vonnegut novel, "I will lose weight for you when I am 55." Closing in on 52, in time I may be in a position to keep my promise :-)

... Stirring Dull Roots With Spring Rain ...

2010-03-14T06:50:00.000-07:00

   The world outside my window is brown and white. The bare ground divulges no color, and what remains of the snow that blanketted us not two weeks ago fades by the hour with each drop of rain. There is a song bird making its call. I hear it through windows still closed tightly against the cold. Its repetitious, unremitting tweet will be annoying in another month when it wakes me too early. This morning it is encourages me to remember that spring is on its way.

   In the last two months much, and happily little, has transpired. Denise and I had a most uneventful return visit to Aruba, breaking the spell of last year's troubles with fire at home while we were away. Bonnie, Mark and Rob treated us to shrimp and chocolate when we returned on St. Valentine's Day. Nikko turned 18, immediately began trading securities and has promised me the villa in no time. I am content with his adventurous joy and the greater security than stocks bring knowing that he is off to college at the Rochester Institute of Technology in the fall. A perfect fit of student to school and in the geographic perimeter of my origins, renewed by Denise's presence there. Sam is doing well in the final lap of 8th grade. Comforted by his circle of friends, he samples life cautiously but curiously in anticipation of high school.

   My health is unchanged. As everyone knows, I have chronic pain, tingling and numbness on the right side of my face. The newish neuropathic drug I take has helped, more than any one of the others of its kind, but by no means offers complete coverage for the sensation; true to is reputation, it has caused me some weight. I am working now in a more holistic way -- yes, including yoga -- to live with the sensation; medication will only be a part of that program and not the whole thing. Call me a slow learner, I guess I only hoped that medical science could do everything.

   My Uncle Joe passed away last month. Although a mercy for him, it was sad for me. About him, I have written an extended piece already:
http://www.bartolomeo.com/Memorials/Detail.aspx?oid=1199&mid=1366. Prayers continue for Aunt Angel, Richard and Lori and the children, Renee and Mark in this period of what must be renewal. As Uncle Joe did so resplendently in life, so did he do in passing: the funeral brought the family together for a celebration.

   More than anything this morning I mourn with the Cornell community for the passing of some students' lives this year as a result of illness, perhaps accidents and suicide. The awful loss of their lives and the unspeakable sadness it brings families must be understood as a piercing reminder to search for deeper and true meaning no matter what our disciplines or ambitions. Nothing like illness or death sharpens those realizations. The song bird has flown away. Perhaps it sensed I might become annoyed with its call. Or that its lesson had already been imparted on me and it has so many other people to visit today.

What a Trip!

2010-01-15T16:55:00.000-08:00

I am at Boston's Logan airport, Friday night, January 15, waiting for Denise to fly in from Rochester. Tomorrow I go to the ALA (American Library Association) midwinter meeting; at 4:00 I am giving an "in-process" paper on European Privacy Laws. In addition to general interest in privacy laws I have been researching the topic to assist my friends at InCommon, an organization associated with Internet 2, with the international connections that they have and continue to make, not least with Europe, which like much of the developed world, has comprehensive and more restrictive privacy laws regarding personally identifiable information. On Sunday I will go to a completely unofficial meeting of some fantastic people: Susan Perry, Harry Lewis, Karrie Peterson and others, to talk about blow-your-mind new approaches to teaching and learning ... from the student perspective is the only way I can begin to describe what we hope to discuss. More on all of that later, and probably in a venue other than this blog.

Things are looking up! Over the holiday I talked first with my primary doctor in Ithaca and then my attending physician in Boston at the Amyloid Research and Treatment Center. Together we have determined I may not need to undergo quite the wide range or number of tests so frequently ... at least insofar as I have no other symptoms of amyloid deposition in vital organs. Rather than quarterly, annually I will have the blood and urine tests for lambda light chains and/or other signs of vital organ damage; a belly fat pad aspiration (because if amyloid is found, the probability of organ deposition is great) and maybe another bone marrow aspiration. We'll see about that one; it kinda hurts! Anyway, the presentation of the original amyloid in the nerve is rare that no one knows exactly what do to or say about it going forward. Lucky number 13 in the medical literature of U.S. cases! So until there is more evidence of either amyloidosis or other diseases caused or related to the excess production of lambda light chains (multiple myeloma, for example, which was Dr. Law's original concern when the results of the first bone marrow aspiration following the surgery came back showing abnormal plasma cells), then perhaps I can put my children through college instead of going into debt paying medical bills. And after three months of demurring on a new medication (one I lost the script, another time I let it expire and a third time I put it through the wash; I did not like what I read about its side effects), I have finally tried it and, low and behold, it seems to help. By 5:00 pm every day, when usually the pain is about a 7, now it is down to 3 or 4. That's improvement!

Other good news: Bonnie has a job that she loves! Rob said good-bye to college and within a week had two job offers! He will take the state test for fire-fighters and aspires to work as a fireman; currently he is doing volunteer fire fighting with the Pittsford crew. The Rochester Institute of Technology not only accepted Nikko via early admission but offered him a scholarship. We are delighted for him and believe RIT is perfect fit. Sam hangs with the cool kids at school while maintaining good grades and a good heart; he will do Festival for piano next month and go to spend some time with his Uncle Art and Aunt Heidi in Indiana this summer. Sam is taking German and Aunt Heidi, a native of Germany, will sharpen his language skills as well as tell him stories of what it was like to be in Germany during World War II. Now that's cool!

The summer after I graduated from Cornell Law School one of my classmates, who had gone to Harvard as an undergraduate, invited me to his wedding. He was marrying a woman he had met during college and they had their party at the Marriott on the Charles River in Cambridge. Nikko was three and a half, and I decided to take him with me. My college friend Judy, who was from Newton and had moved eventually back to the area, found a babysitter for Nikko during the evening reception, but otherwise he came with me to the wedding held in Harvard Yard and all of the day activities. It was a wonderful time. What I remember most right now is sitting in the back of the propeller plane in Rochester where we boarded and telling him everything about how a plane flies and how we would lift off and where we were going. So now an hour ago Denise boarded a plane in Rochester, probably also a propeller, and she is in the air on the way here to share the non-work parts of the weekend. Having just finished an intensive, successful week course on Interfaith Studies at the seminary for doctoral students, she is exhausted but also pumped and energized. Boston will forever be the city love of my life; I have more stories about my experiences here over the years than this blog is fit to reveal. Tonight we will add one more, a simple story of love, fun and celebration of life.

Oh, got to go, she just called. Believe it or not by Ripley, the flight arrived early!

Paper: The First Anniversary

2009-11-15T10:11:00.000-08:00

A year ago last week I went under the knife. So to speak. The endoscopic procedure hardly resembles surgeries of old and so I have no real idea of what implements the surgeons deployed to probe the trigeminal nerve deep in the Meckel's Cave portion of the lower skull. The biopsy revealed an amyloid, blood and bone marrow tests followed and I was off to Boston University Medical Center for Amyloid Treatment and Research. Although three days of tests revealed no other amyloids -- and everything from belly fat to heart was examined -- the results of a second bone marrow biopsy revealed to the hematologist the aberrant plasma cells that produce the excess lambda proteins that form the amyloid in body tissue. I have been checked repeatedly throughout this last year for any change in the levels of those proteins in blood, urine, heart tissue as indication of a deepening of the disease in heart, kidney, intestines or lungs. The elevated numbers remained constant, until recently. The last 24 urine test revealed none.

What has changed? Here is truly my hair brained belief, subject to change the minute someone figures out that the test was faulty or any other more believable explanation. Two months ago I become extremely ill very suddenly. I had never had anything like that happen in my life before. Four day blood tests revealed common strep bacteria and I recovered after a full dose of very powerful antibiotics. But I wonder. I had no evidence of it in my lungs, where it usually resides, and the pain in my left flank was truly overwhelming, perhaps evidence that my kidneys were on their way to shutting down, and if so, then a signal as to how seriously the bacteria had penetrated my system. But with almost no warning. So here is my idea: either as cause or effect, the immunological response of my body has at least temporarily knocked out the aberrant plasma cells. Maybe I produced my own "stem cell transplant" with this extreme reaction, and if so, have bought myself more time than the hematologist prognosticated I had last year before needing the procedure, two to three years. From this blog to God's ears ...

In the meantime the pain in my jaw continues unabated. My dear friend Karl Pillemer, always on the outlook for me thankfully, has recommended a face and head pain clinic at Columbia Presbyterian in New York City. That recommendation just came this weekend and I will follow up this week for an appointment. After a year of pain, produced probably by the scraping of the nerve before the surgeons understood what it was they were slightly resecting, I am prepared for a medical regime, even if it means using minimal levels of controlled substances. I have tried all of the neuropathic medications to no avail. And believe it or not, I am even tired of drinking wine for medicinal purposes. That process has spoiled the fun of drinking it for its own pleasure.

There is other good news to share. Denise decided to forsake the house that burned in the 19th Ward of Rochester and has moved into a lovely home in the fashionable district on Park Avenue. We love it and have already enjoyed the area with its restaurants and shops. Bonnie has a handsome and very nice boyfriend named Mark, and Rob is seeing a lovely young woman, Morgan. Nikko has made his application with RIT and still seeing Miss Mady, who is thinking of colleges near her home in New York City. Sam is killing aliens in the basement, played a good season of modified soccer and has just made the Junior National Honor Society. We are proud of each one of them, and love them all.

For Thanksgiving we will host Denise's cousin and her daughter, my good friend from graduate school and her husband, Sandy and Tom, at the lake house. Denise is off to Melbourne, Australia shortly thereafter for an International Conference on World Religions and I follow up by one of my favorite things all year: seeing friends for work in the North West Corner of our county. Denise will meet me in Portland and we will share a weekend before returning for the pagan-christian holiday season. :-) Christmas we will celebrate in Rochester this year.

The pain notwithstanding I feel good. I have more energy every day. Delighted to have this very unusual year behind me, I am looking forward to new, more productive challenges in the hope of health and happiness of this next year. May I wish the same for all of you!

Summer Is Over

2009-09-08T09:24:00.000-07:00

I have a few minutes lunch break and so I thought I would use it to say hello to family and friends via this site. On the medical front I had hoped that the dog days of summer would bring calm but I am afraid that events a week ago Friday blew that expectation high out of the water. I will describe it how I experienced it.

At midnight I flung myself over Denise's dog, Sadie, who was dutifully sleeping by my bed, into the bathroom where, hate to say, I vomited violently. When I got back into bed I descended into a state of throbbing pain on my left flank, fever, chills and a sense of disorientation that increased throughout the night. Denise was at Holy Cross Monastery, where of course quiet prevails, and so had her phone off. Finally around five I called my dear friend Susan D., a community nurse here in Ithaca, erstwhile adult age student of mine. We talked for about 10 minutes at which point she said, "Do you want me to take you to the hospital?" I said no, and she said, "Okay, well I am going to work, call me if you need me." About 15 minutes later she was in my driveway and up the stairs. "I am not going to argue with you over the phone. Get in the car."

Susan might have saved my life. Turns out I was becoming septic from a bacterial infection. A fortnight and the most potent broad spectrum antibiotics later I am almost completely recovered although still tired and drained from the experience.

What was it and why? A common strep infection gone wild, probably because the plasma cell disorder has suppressed my immune system. Unusually it did not nest in my lungs, in which case it would have been a pneumonia, but I believe emerged out of my sinuses, where it is possible that for some time I have had inflammation, infection or sinusitis. This condition goes a long way to explain the PAIN in the right side of my face. I do not have that acute pain today, nor have I had it for some days, notwithstanding the fact that I since for a few days I could keep nothing down I have in effect gone on a drug holiday. I have the completely weird sensation of the nerve disorder: numbness, sensitivity and tingling, but the pain is gone. You should have seen what came out of my nostrils last week. Okay, enough.

Lord above, can you contemplate how thick some doctors are not to have made the connection between the endoscopic approach of the surgery last fall, described by my ENT doctor as having, "banged my sinuses all to hell," and my facial pain? No wonder my doctor always looked at me a big crazy when I told him about the pain. I get it now. With the nerve disorder I should have every weird feeling in the book, which by late evening is as distracting as pain, but it is not exactly pain. The pain must have come from the pressure in the sinuses. Here is an example of how specialists cannot see the forrest for the trees. I might be dead but for the medical community, including the same doctor who insisted to the Emergency Department doctor that I be given intravenous powerful antibiotics on the day I showed up on ED's doorstep, but I do despair at the persistent experience I have of being "vindicated" (doctor's word not mine) only after having suffered many months of symptoms before a test, or in this case a severe infection, bore out the cause of the problem. And this I now know: I cannot afford to get that sick again.

This Friday I go to Boston Medical for the six month echocardiogram. I suspect it will be fine, as are my kidneys and lungs and other vital organs. But I also suspect that with my diminished immune system I am not quite be the same healthy girl I was before. A metaphor for aging, perhaps, but a reality nonetheless, one I accept with a certain degree of humility about the frailty of our human condition.

Checking Out

2009-07-06T12:13:00.000-07:00

Well, not in any serious way, it is just, finally, so beautiful outside that I thought I would get a word or two on the blog and then check out for the rest of the summer. Here are some updates.

Bodily fluids tests showed no surprises. Everything is good, including measure for kidney functions, except the high level of lambda light chains and the poor ratio between them and the kappa light chains. (Remember, they are both "light" proteins that attach to a "heavy" protein to create a lymphocyte and are potential trouble when out of balance and loose in the circulation.)

Pain management has not been great. My primary demurs from a pain clinic referral because he fears that with something so odd as my experience and the fact that it is chronic I may ultimately become psychologically and physically addicted to narcotics. He proffered a prescription for a "synthetic" narcotic, but I have only taken a couple and with no perceivable effect. Over this last holiday weekend I took it pretty easy and noticed that the ache subsided a bit, not cycling as it is wont to do on most days to a high pitch at about 5 or 6 in the afternoon, and that even today, as I am back at work, while the sensation is rising it is not quite as achy as before. Maybe variation is what I am to expect for the long, foreseeable future, especially while not being treated for the underlying disease.

I do have a new theory about the pain: it is a combination of nerve and muscle discomfort. I am not sure that the doctors have taken the potential for muscle discomfort into account. I even asked my attending physician at Boston Medical Center and she was not sure she knew what effect the deterioration of the nerve would have on the jaw muscle. I think that it makes it overwork as it tries to figure out what the nerve is, or is not, directing it to do. Hence the ache. I understand Dr. Law's point about the pain clinic; in fact, I have not gone to one for the same reason. But I do want to pursue these other considerations and perhaps ask for a run of the mill muscle relaxant or something like that to see if it would help. I know you will all have a chuckle when I say that nothing helps it more than a glass or two of pinot noir, and if that is the end of the discussion then life could be worse, but it does seem odd that the entire medical profession, not to mention the pharmaceutical industry, does not have something for this discomfort.

On the treatment front, I also have a new thought: Should treatment follow the Alzheimer's path, rather than the cancer model? From what I understand, Alzheimer's disease, associated with dementia, is also a "protein" problem, different protein than a lambda light chain, butit involves the same process where it ( a Beta protein) unfolds "unconventionally" in brain tissue which causes for the accumulation of "plaque" that destroys the brain tissue. Treatment models search for materials that either or both neutralize the proteins or eliminate them from the body. That sounds right to me, more targeted, than the stem cell transplant approach that, at least for amyloidosis, is not even a "cure" but only pauses the production of too many light chains. Unlike some disorders, such as lymphoma, the freezing process of the stem cells does not kill the abberant cells, in this case plasma cells that the body cannot live without anyway, and nor does it correct their deviation. It just resets the clock. If there were materials that somehow interfered with the deposition of the proteins into tissue, that should go a long way in deferring the disease. I am not a doctor, so what do I know, but I will go to the regional events where research and medical doctors interested in this disorder visit the support group and share my ideas.

Quick update: All of us had a wonderful time at the Mitrano family reunion last weekend in the Adirondacks. The house issue for Denise is in abeyance while insurer and contractor attempt to close a $200,000 gap (!) in their estimates. All the children are very well and thriving: Bonnie is finishing up her master's program in human resources; Rob is working in a shop this summer and taking a third year to do general automotive mechanics; Nikko has taken the college standardized tests and picking out schools for applications; and Sam alternates between killing video zombies and riding his bike around the neighborhood looking to play ball. At the General Convention for the Episcopal Church, this year in Anaheim, Denise has two full weeks of immersion in the politics of the church. Nikko will accompany me this year to Boulder for the EDUCAUSE Board Meeting held there, after which we will visit my friends Sandy and Tom in the mountains. (Sam came with me last year.) And altogether we hope to steal a few days away at the lake house between renters.

Have a wonderful summer, friends and family! Next test is the sixth month echocardiogram which I will have in Boston in the early fall. Send a prayer that the discomfort subsides, and know that in the meantime I count my blessings, including each one of you, every day.

Checking In

2009-05-13T06:03:00.000-07:00

It has been almost two months since my last post, so at the very least I wanted to check in with family and friends who might be looking at the blog for updates.

Nothing dramatic to report --- thank heavens! In addition to a very packed schedule, Denise has been doing all of the necessary work of rebuilding a life post fire. She and her family have moved into a very nice rectory of a church in the suburb of Rochester, Pittsford, right in the center of town. Great neighborhood with shops and restaurants and cafes, quite a contrast to the challenging neighborhood of the 19th ward where her house sits. As reported previously, the fire gutted the entire basement and the smoke damage was so extensive that the rest of the house is being taken down to the studs. In short, it will take 3 times what she paid for the house to repair it, and 6 to 9 months of time. In love with the home, Denise is willing to make the sacrifice, and is working with both the restoration firm and a contractor. In the meantime, we have gone on shopping sprees for beds, linens, kitchen items, china and glassware. I would be fibbing if I said it wasn't fun, although it did get tiring. The result is some very beautiful things, which is a consolation of sorts after the extraordinary shock and disappointment of the fire.

On the medical front for me, nothing significant has changed. I am overdue by a few weeks to have my blood and kidney tests done, but do not believe that there is any cause for alarm or hurry. Unofficially, I believe that the protein levels in my blood have been elevated for four to five years, based on a common blood test done that many years ago that showed an elevation left unexplored until all of this more recent activity brought on by the symptoms in my face. My urine (can you believe I am talking about this kind of thing in a public blog!?!) is not frothy or clouded, which is the obvious sign of protein spills that indicate adversely affected kidney function. It is a late sign, and I will have the 24 hour test sometime in the next week or so. Brandeis has asked me to speak in September so I will have the echocardiogram plus these two tests done at the Boston Medical Center then. Apart from a textbook case of the flu a few weeks ago, and the continual pain in the nerve, I feel fine and am involved in all of my usual activities. The only risk I think I have of a heart attack at this point is every time I open one of the bills for these tests, procedures, doctors and medical centers -- no joke!

As most everyone who reads this blog knows I celebrated my 51 birthday since the last entry. I had a wonderful couple of days. First, some years ago I discovered that my actual birthday is April 30, not May 1st. This recognition is due to the fact that I was born 5 minutes after midnight Eastern Daylight Time, which means according to the "real" calendar, 5 minutes after 11pm. That date places me on the birthday of both my beloved father and his older beloved brother Bill Morgan (nee Anthony Mitrano). Now I celebrate that day as a family birthday. Denise came down from Rochester, the boys came home from school and because our kitchen was torn up in the process of putting in a new floor we ordered T-bone steaks from John Thomas (where they have a great deal so long as the Dow stays below 10,000) and opened my last bottle of an Oregon pinot I have been holding for a special occasion. The next day Denise, Sam (who was out of school for dental work) and two wonderful friends Christina and Sarah and I had lunch at the new Green Cafe in Collegetown. That night, Denise and I went up to Rochester and ate at Maxie's, across from the Eastman School and Theater downtown. And then to top it off, Saturday night we had a party at the lakehouse with many wonderful people and friends and the children, including Rob. I could not be happier or feel more loved. It was a perfect birthday weekend!

Such occasions are always time for reflection and so here is mine: perhaps because of events such as the surgery and diagnosis of a serious disease I have taken stock of my life at a deeper level than usual. I am here to report that my 50th year has been, notwithstanding 10 hours of neurosurgery, the shock of learning that I have a "fatal" disease and all of those $%^&* medical bills, the happiest year of my life. Words fail me to describe the pride, love and joy I take in my family and friends. I have come to know people in so many more deep and meaningful ways who were already in my life, and some whom I have now met for the first time as a result of this experience. The children mean everything to me, and I take enormous pleasure in their every step: a good grade, or the challenge of a poor one, the enlightenment moment of knowing now what they would like to do in life (Rob, fireman; Bonnie, nurse), a base hit or better yet a stolen base for Sam and an inevitably funny moment with Nikko who lives up to the Japanese translation of his name "sunshine" and "light" every day.

I am in D.C. for a Board Meeting of EDUCAUSE, departure back to Ithaca soon. While here, and forever when I think of D.C. I remember with much emotion my Aunt Toni and Uncle Bill. My Aunt Toni especially, because in her last years in D.C. alone, I took advantage almost every time I visited the area to see her. Aunt Toni saved the quality of my life many times. When I was 17 and so unsure of where or how to go to college, she gently guided me. (Uncle Bill put the frosting on the cake when he helped my father understand my decision, as disappointing as it was for him that I did not help him with the restaurant.) When I came back from my first semester from college in London a failure, Aunt Toni knew, and was willing to say out loud, that I was struggling with my sexual identity and a relationship that preoccupied me beyond study. So many years later she offered guidance about the upbringing of my children, was kind more than curious to recognize my sadness in the breakup of my first marriage, and she was supportive and joyful about my second one. Aunt Toni, Antonia Bell Morgan, was truly an extraordinary person by any measure: full scholarship to Oxford, public speaker, psychologist, a professional "war bride," mother of three very beautiful and successful children in each their own right, five grandchildren, brilliant, funny, dignified and of a refined spirit as well as mind and heart. There are many more stories to share about Aunt Toni, her life, and how she elevated mine; here is not the place. But being physically in D.C. reminds me that I miss her always, and cherish the memory of my good fortune to have been but a small part of her life.

So I will get into the car soon and drive to Ithaca. Statistics being what they are, it is possible that all the concern about a disease with a relatively unpredictable physiology could be dust in the wind were the car to malfunction at 70 miles an hour or a driver to swerve into my path. To those thoughts, and all that I have recorded here, I only want to say that I fully expect to make it home in one piece. For that matter, I hope to live another 40 years. But should the universe in its ineluctable wisdom take me at any moment, I have loved and I have lived, even in some moments big, and am content to have done so.

Unbelievable!

2009-03-23T16:48:00.000-07:00

First, the basic medical news. A couple of weeks ago my primary care physician in Ithaca, Dr. Law, did two positive things: lifted my spirits and changed my pain medication. His spirit lift was simply to suggest that so much is unknown about this disease that he suggests putting worry on hold. Instinctively I was already there, and he helped me make the thought more firm. About future treatments, I will cross that proverbial bridge when I get to it. In the meantime I have talked openly with the boys about these eventualities so everyone is up to speed. I will continue to be tested in full for a year. Dr. Law suggests that after one year, if everything is well, I may not have to be so heavily monitored. That advice I may not follow. The cost to my life if my organs are involved is too grave to treat facilely, and the doctors at BU are, after all, the experts. But I like the upbeat perspective.

The new pain medication is helping. It has more of a sustainable numbing effect which has brought my pain levels down a notch or two from where they hovered since the surgery. By five in the afternoon, for example, when the pitch is rising to fever, it is about a 4-5 rather than a 6-7. I think of each increase like the Richter scale, i.e. 10 times as great as the one before it. Perhaps someday the amyloid will destroy the nerve completely. I have been warned by doctors that it might be hard to tell because of phantom pain symptoms, but at least for now it is better than before. Nerves take a long time to heal, so it is also possible that the additional damage done to the nerve by the surgery is also on the wane.

One side effect of the numbness is that I am chewing the inside of my chin and cheek more, something I recognize either, or both, by texture and the taste of blood. Gross, huh? I don't feel it in the traditional way that one would. And anyone who considers themself my friend, and I hope you all do, will help me by taking complete liberty to let me know if food dangles around the outside of my mouth? Please!

And now for that which is unbelievable in the general life category: 48 hours after Denise and I arrived in Aruba, her daughter called to tell us that their house -- the one into which Denise had just moved two weeks prior -- had suffered devastating fire and smoke damage. Bonnie, Rob and Denise's dog, Sadie, all escaped as the basement was engulfed in flames and smoke rose up the cellar stairs.

I hardly know what more to say than to share the news. All fires are horrifying. Vulnerable feelings engulf like flames. What was once a comfortable setting, filled with treasured photographs, art and warm memories turns to destruction, bad air and ash. After so many years of different places to live, that Denise finally felt like she was home profoundly compounds the loss. Our very first entertainment was with my beloved Aunt Angel and Uncle Joe who brought delicious food and home made wine. Sadie even broke away from her imprisonment in the basement to offer an exuberant, golden-retriever greeting. Now, in the same room where we had dinner, there is broken glass, upturned chairs, charred frame and photographs of a turn-of-the-last century vaudeville advertisement featuring Denise's paternal grandfather. The stench is truly toxic (and since the BU doctors told me to stay away from toxins such as pesticides and fertilizers or other chemicals, I tried to get out as soon as the others arrived to assist Denise in the review).

The fire was late Friday night. We received the call Saturday afternoon. The rest of that day was very difficult emotionally for Denise, naturally. By Sunday morning we had begun to settle down, best evidenced by an surprising, atypical and completely hilarious comment Denise spontaneously made while we were having lunch. We were sitting in an outdoor restaurant that had a tarp strung overhead when some dark clouds blew in quickly and it started to rain. A group of people walking by ran into the protected area under the tarp. One woman, right out of Central Casting, NYC, said, "In awl the yeers I've bean comin' to Aruba, I neva saw it rain!" At which point Denise pointed to herself and said outloud, "It's me, it must have been me, I caused the rain." There is nothing like humor to navigate the tricky shoals of life.

Matters for Now

2009-03-03T07:53:00.000-08:00

It has been a month since the evaluation at Boston University. Although Dr. O'Connell called me the Friday of that week with the results, the formal papers did not arrive until last weekend. Nothing new to report, but I have done some research to understand the root medical issues better.

First, the confusion over the amyloid from the neurosurgery is essentially moot for at least two reasons. The most important is that having found the aberrant plasma cells in the bone marrow as well as in the nerve tissue together with the free light chains in circulation, urine, marrow and in disproportion (3 times more lambda than kappa) the diagnosis of AL amyloidosis is certain and does not require the biopsy to substantiate it. The other reason is that according to the hematologist, Dr. Sloan, the amyloid is "finicky," and therefore subject to uncertainty given the tricky way it weaves itself into tissue and requires staining and special lights to diagnose.

Second, I questioned what about the plasma cells indicated the disease and have learned that it is their mere presence in the marrow and on the biopsy that is the root problem. These cells are the ones that produce the excess free light chains. That the chains are "lambda" and not "kappa" rings the final bell. Interestingly, Dr. Sloan is sufficiently intrigued by the slides of the biopsy that the formal papers state that he is going to use them in a conference presentation. Glad to be of service! I will see Dr. Law later this month to go over all of this material and to set up a schedule of tests as prescribed by the Amyloid Center.

At the same time I am still working out pain management issues with him. Finally, after 18 months on the anti-seizure medication, I am off of it, which has helped the vision problems in my right eye. Blurriness, dryness and poor focus are the result of poorly done LASIX surgery by the infamous-to-the-Ithaca-area Dr. Arleo. The drug exacerbated these problems because it interfered with the compensation that the brain performs to favor the left (formerly weaker) eye. The gabapentin was only minimally effective by the time I weaned off of it, but did want to be careful not to cause a seizure by going off of it too quickly. (Not that I have ever had a seizure, but reliance on the medication for pain management creates its own potential for seizures.)

I am now on a neuropathic drug used mainly by diabetic patients, cymbalta, which both Dr. Law (whose practice is largely endocrinology) and the neurologist at BU (someone with whom I had gone the University of Rochester with, coincidentally) recommended. It might be helping a bit, but it also makes me more tired than I would ordinarily be. And causes me to yawn uncontrollably sometimes! On Friday nights I cannot wait to get to bed, and usually sleep 12 hours to make up for the extra push I make during the week; I also sleep at least 10 hours on Saturday nights as well and try to get to bed by 9 or 10 -- unheard of in the old days! -- on work nights. When I wake up the pain is about a "2." By mid-day it is a "4" or "5." And by five o'clock it hits its peak and is often at the "7" mark, where it hovers until I go to sleep. At least I am getting about half a day at a duller roar. For financial reasons I stopped the acupuncture, but hold it in reserve in the event that I accommodate to the medication and will need another method to break up the pain.

The boys are great. Nikko spent his vacation week with the Guiliani's in Conn. and his girlfriend Mady. Sam played with multiple friends over the two weekends, including one at the lake with Susan and Ian after a swim meet in Watkin's Glen for Ian. During the week I took an afternoon off and Sam and I had lunch together, shopped and played squash. They are beautiful, fun, loving boys and I could not love or adore them more.

Also in these last few weeks Denise moved from her home in Penn Yan (where she had been a parish priest at St. Mark's until last year) to Rochester (where she works for the bishop). If you can believe it, her new home is less than a mile from where I grew up and lived all my life until I was 19! Denise's home is in the lovely "Sibley Tract" of the 19th Ward, and promises to be a great house, neighborhood and stabilizing feature for someone who has been incredibly peripatetic most of her life. And the really good news is that she and I are going to Aruba for five days later this month. No hospitals, doctors or medical tests, just warmth, sun and fun.

Once again I feel very indebted to so many people who have expressed concern, shown kindness, been there when I needed them, said the right thing at the right time and most of all been the true meaning of family and friends. I have not lost that sense of wonder about the fragility of life that I glimpsed when my parents died, and then when some of my teachers (Elizabeth Fox-Genovese and Brenda Meehan) passed away in the last few years and now with this challenge of my own. No one would wish for a serious disease. It has to bring with it something positive, something newly experienced for the better, something learned. With the abundant love I felt in the aftermath of the surgery and the awareness I have for the preciousness of every minute and every person, the prospect of less has become more.

Grateful for Good News Even If It Involves a "But"

2009-02-06T12:53:00.000-08:00

Not long ago I spoke with Dr. O'Connell at the Boston Medical Center. Her report confirms what the hematologist suggested earlier this week: no organ involvement, but a plasma cell disorder that is amyloidosis.

Given the toxicity of the chemotherapy, the team does not recommend any treatment at this time. But I do have to have quarterly blood and urine tests (electrophoresis); six month cardiograms and annual visits to the Boston Center.

The probability that it will progress to organ involvement? According to the doctor almost certainly. Have they had other patients with my profile? Yes, minus the head issue, and almost always it progresses. Is it possible to live a whole life with the plasma cell disorder and no symptoms. Not likely.

The question remains whether other centers would recommend a different course, for example chemotherapy to address the plasma cell disorder but not the bone marrow transplant. Not today, because I have had enough of this medical stuff for awhile, but at some point I might contact another center, perhaps Stanford, and ask that question. (Having already contacted them I know that they will accept the tests, but require seeing me in person for a second opinion.)

What is not in question is that I must maximize my physical condition in order to be in the best shape possible for when this near inevitable next step will be required.

Dr. O'Connell commented on what we have already observed: as completely annoying, to say the least, as this whatever it is in my head has been and remains, strangely enough it might also be the vehicle for saving my life. I know now that I have a disease that is otherwise completely asymptomatic often until significant damage is done. And so we will worry about next steps when we have to take them, but at least I know the intermediate ones. That, in itself, is a grace.

Mid-Course at the Amyloid Center

2009-02-03T13:33:00.000-08:00

What a roller-coaster ride it has been for the last 24 hours! Yesterday and today I have had a series of medical tests, from lots of drawn blood to breathing in tubes and running up and down flights of stairs with monitors attached, to abdomen fat and bone marrow biopsies. Good news: apparently no vital organ involvement.

And then a surprise: being told off-handed by the doctor who performed the bone marrow biopsy that the BU pathologist did not find an amyloid in the tissue sent from UPMC!

And than a return flight back to Earth today when the hematologist laid out the options once again centered around the amyloid theme. In short, given the aforementioned MGUS (light chains in bone marrow and circulation) plus the same proteins on the trigeminal nerve (whatever anyone's conclusion about it), equals pretty much the same diagnosis.

Net/net tentative: probably no therapies ... yet ... 3 month blood tests and 6 month organ tests. According to this doctor, I should expect to have therapies within the next three years. I am not going to post his theories about how long that therapy lasts because in that amount of time so much can change it is silly to sit here in the hotel room and speculate on such attenuated diagnosis.

I confess that for the first time in front of a doctor I became a little upset when told about this trajectory, but in retrospect I think it is more because of the rapid and wild change of expectations since we have been here. Driving up Denise and I were prepared to hear that therapies could be imminent. Being told yesterday that the thing on the nerve was not even an amyloid raised my optimism above guarded, but alas, this afternoon's conversation threw my emotions into reverse quickly and I feel the backlash.

To be sure, the prognosis could be much, much worse. We are in a class of people here for the three day evaluations where it is evident that for others this visit has come a bit late, so I count my blessings. I was excused today from the support group that focuses on preparation for bone marrow transplants. But I am tired of all this medical stuff, and tests and interpretations, not to mention battles with the insurance company and surly staff people. As a rule, my personality is better girded for a challenge, and I tend toward anxiety to be in abeyance. Glad, infinitely glad, to have Denise with me. I also miss and want to be home with my children. Not even the allure of Boston is doing much for me right now, this city of my dreams where I fled decades ago when I ran away from home in Rochester. Right now I merely wish to think of something, anything, that does not smack of medical terms and diagnoses.

Pardon my intemperate post ... just want to share what is going on and let family and friends know that in the midst of everything I am thinking about you. I feel every good wish, hope and prayer and look forward in each person's case to returning the kindness!

By week's end the attending doctor for my case will call me with the formal assessment. I will be sure to share that information as well. Hell, by then perhaps they will tell me that I had the disorder, fell through Alice in Wonderland's time warp and am already cured!

Snowing wildly here in Boston. Can't wait for spring :-)

Tracy

Boston University, February 2, 3 and 4.

2009-01-16T05:39:00.000-08:00

Yesterday the Boston University Amyloid Research and Treatment Center set February 2, 3 and 4 as the dates for my evaluation. It was a 90 second conversation confirming the dates and contact information. I will receive the full packet of information, and I imagine a thousand forms to fill out, in the mail soon. Denise and I will probably go up on Sunday night and I hope be able to leave on Wednesday. I have taken those days off from work, but plan to be back at my desk on Thursday, February 5.

I am of at least three minds about this next step. The first is relieved to have a date at one of the two best places in the country to go for this evaluation; the other one being the Mayo Clinic. A few nights ago at dinner the boys and I were joking about the amyloid, it is, after all, such a strange word (originally misunderstood chemically to be a "starch," not a protein, and hence its misbegotten etymology), and so I took my cue and said, "I have been thinking about going someplace to understand more about this thing. I could go to Minnesota or Boston, what do you think?" "Go to Boston," Sam said assuredly. And so there it is, the boys know that I am going there. [I have also just learned that Stanford has a Center too.]

BU is highly recommended by my cousin Elizabeth, and by reports from Karen Hanson in Rochester, whose husband sadly passed away last year from the disorder, but not before he received expert care from the Center in the form of chemotherapy and a bone marrow transplant. In fact, at least for the time, the treatments "cured" the amyloidosis, but very unfortunately, and as is the case for so many people, he was already suffering from severe organ failure at the time of his diagnosis. I can only hope that however annoying the manifestation of this amyloid is on my trigeminal nerve it is nonetheless infinitely better in terms of a prognosis than if the first time I learned about it was as the result of a heart attack or kidney failure.

The second is intellectually curious. I cannot help but be fascinated by the scientific medicine of this disorder. It is chemistry at the base, and I loved chemistry so much in high school I ran ahead of the class and took the Regents examine in January instead of June. And of course biology, because there is something about the plasma cell production that must get out of whack. Without additional evidence I can only reflect on how our bodies begin to break down at some point, not unlike even the most well-tended machine. We are a bundle of moving parts, and it is not a wonder that at some point little anomalies occur. And medicine. If, in fact, through treatment doctors can actually correct the plasma cell production, how fascinating is that! Like with the surgery, where before it I became intensely interested in the physics of the surgical approaches to the lower brain and then in the immediate aftermath not so enamoured during recuperation, I may lose some of my intellectual interest during treatment, but it is as good a diversion as any in these days leading up to the evaluation.

The third is hopeful. Through the abdomen biopsy and whatever other tests I will have in Boston I will learn more about whether or how much the lambda light chain proteins, "chains" as I hear doctors call them, have penetrated other tissue in my body. I expect to leave with a treatment plan, which, according to everything I have read and at least one other doctor with whom I spoke, will very likely include chemotherapy. The outstanding question is whether treatment jumps to a bone marrow transplant with this disorder, unlike cancer where more frequently rounds of chemotherapy are exhausted before turning to bone marrow replacement as a last result. On the one hand, I can already imagine an argument for jumping if the idea is to reset the bone marrow plasma cell production correctly. On the other hand, bone marrow transplant, in this case autologous, is still, while taking into account improvements over the years, a major and risky procedure not least because of the utter defenseless state of the immune system in the interim. Hope, again, jumps to mind, because apart from having a fatal disease I am otherwise healthy. (Compliments to Denise's mother, who beat ten years of lymphoma after four rounds of chemotherapy with a bone marrow transplant at the age of 67 ... that line is a paraphrase of one a doctor said to her at the time of her treatments.) I had an EKG before the surgery and no one mentioned any concern. I also had subsequent to the surgery a lovely 24 hour urine test which at least had normal creatine levels. Maybe, just maybe, there is not serious tissues damage apart from on my nerve.

I have more stories to tell, but I wanted to at least make this information available. What I do not have the time to say in sufficient depth at the moment is how overwhelmed I am at the extraordinary kindness of so many people as this story has dragged on from weird symptoms to surgery to medical attention. That story constitute its own thoughtful post. Second, I do want to share my experience about the pain management, especially since two weeks ago I could not even get out of bed very well and since then I have been not only back to work but doing full days and loving every minute of it! And finally, I want to explore what is a pedestrian banality in the literature of medical disease, how one's perspective on the world changes ... that is, it is pedestrian and banal until one actually experiences it.

Good News, Bad News

2009-01-06T15:23:00.001-08:00

The good news is that I am getting the pain relatively under control. The process has been one of of piecemeal, eclectic attempts. Three times I have now been to a wonderful Dr. Zhao from Nanjing, China, who is very appropriate and professional and has, I believe, pulled the pain from its more extreme edges and is moving it back to where it began in the nerve. It is an amazing process. The first day I went I was so desperate she could have done just about anything to me but still I closed my eyes before she began and did not open them until she was finished. The second time I had more courage. After she inserts the needles she turns off the overhead light and leaves the room warm and quiet. About 15 minutes later I decided to open my eyes. A small light behind me cast a dark shadow on the wall of my face with needles sticking out of it. I almost laughed out loud it was so outrageous!

The second approach was to create my own medicine regime. The most important element is to catch the pain early in the day when it is at its lowest ebb and hit it with a double dose of the anti-seizure medication together with some over the counter ibuprofen and the antiviral I've been taking for inflammation. Four hours later I take one less anti-seizure but maintain the ibuprofen. Late afternoon I have experimented to see if I can go with out the ibuprofen until bed time. Together with the acupuncture, this regime seems to be working at least to bring the pain down to a duller roar.

The third positive feature is that I went back to work on Monday and believe that my passion for it creates a much needed distraction. I have worked as much as I could over the sick leave but there is no alternative to being among friends and colleagues. Today is Tuesday and I am tired after two very full days, but I am very, very happy to be back on my feet and busy. Working at my father's restaurant set the tone thirty five years ago. Trapped behind the bar for what seemed like interminable hours when there was no business was a minor form of torture for a frisky teen-ager, but I had a good time when it was active if only to prove to myself that I could keep up with the big league bartenders. Granted now I don't have the construction workers coming in to see me at noon for shots, a beer and a burger, but I line up the e-mails in my inbox like customers at the bar waiting to take their order. JK!

The bad news is that I am making serious inquiries to the Boston University Amyloid Treatment and Research Center for an evaluation. I can no longer hide the facts from myself. I have lambda light chain proteins in my blood, bone marrow and in the amyloid sample taken during the neurosurgery. When I wrote to UPMC to ask one of the surgeons to assist in making sure the slides would be sent to BU, he wrote back saying, "I guess these findings confirm you have amyloidosis, which explains everything and now you can focus on the treatment." Little did he know he is the first doctor to say it so plainly to me but over the weekend, out of a dream, I had already come to that likely conclusion. So I did my own research and, aided by information from my cousin Elizabeth Morgan, decided to focus on BU because of the excellent reputation of their Center and the closer proximity that the Mayo Clinic. And easier said than done about the potential treatments ... but let me learn more from BU before going down that road. Right now the struggle is getting all of the slides (biopsy and marrow) to the Center so that they can schedule the evaluation. Easier said than done about that point too! Between HIPAA and every one's busy schedules I am spending a chunk of time just massaging the system of communications, although I will say in most cases everyone I actually talk with is very nice to me.

So there it is for now, I thought I should let you know. More information when I have a date, which relies on BU receiving the slides, which relies on my contacting the right offices and signing the release forms, which relies on various forms of telecommunications technologies, which rely on ... you get the idea!

Tracy

New Year's Eve

2008-12-31T14:58:00.000-08:00

My mother called New Year's Eve "amateur's night," but I remember it with great fondness at my father's restaurant in Rochester. As a little girl the memory was vicarious because my mother and I would stay at home and await the midnight call. One could barely hear him with all the noise in the background! Throughout my teens and right up until my father passed away in 2000 I would call him at midnight no matter where I was or what I was doing. Even though I think them silly now, when little I could not wait until he came home the next morning, usually about 8, with a armful of funny paper hats and horns. I have "done" Montreal, Boston, New York City (2000) and even Honolulu on New Year's Eve, together with the residential fare of Rochester, Binghamton, Ithaca and New Jersey and think of my father at midnight every year.

Today I did New Year's Eve at the acupuncturist. In another snit about all the medications I am taking, especially in light of some new ones that I tried the day before yesterday (more powerful anti-seizure as well as narcotic painkillers), I did my usual stunt of going off of everything. I know it is a bit silly, but I honestly did not feel as if I could take another pill. The acupuncturist returned my late night call this morning and I was there within hours. What, if any salutary effect the treatment might have remains to be revealed, and not until I have had some more in a process, but I am willing to try just about anything as I sit here tonight, again, in pain.

My cousins Linda and Tom sent us a wonderful treat just before Christmas, which I promptly stored in the freezer. So glad I did because I cannot muster the energy either to go out or to invite company as would be the tradition and very much my pleasure. Last year we hosted Pat, Kappy and Joe, and I must give them a call by tomorrow to say Happy New Year. Tonight I am so very grateful to have found these treasures in the freezer and share them with Denise, the boys and Nikko's girlfriend, Mady, who is visiting us this vacation. These treats add a sparkle to the evening -- thank you Linda and Tom!

It might be a quieter me that greets 2009. I am most at peace and least in pain when I am not using the nerve to talk or chew, or even moving around much at all. Now I know that there are many who will say that this affliction is divine retribution for having talked too much and having lived to eat and drink all these years, and I might not disagree with the principle of such an observation! I might, however, take as much wisdom as possible from the experience and learn to give (or inflict myself, depending on one's perspective) in different ways that I have in the past.

At Denise's and my commitment ceremony in 2003, Nikko, my older son, stood for a toast. He threw revelers into hilarity when he began by saying that "my mom and Denise met in a chat room!" Never mind that it was not exactly true, even though it was on line, and do remember that my brave boy toasted us at the tender age of 12, but what I will truly never forget is that when the laughter died down and he offered kind words he ended not by saying the usual "here's to the bride and the bride," but "here's to Internet!" I cannot imagine a better way to ring in the new year.

Happy New Year!

I Spoke Too Fast.

2008-12-28T21:37:00.000-08:00

I had a lovely Christmas, and days before and since, but I spoke too fast about the pain abatement as well as the promise to finish the story. You will forgive me. For the most part I have been caught up in usual events of the season and I always underestimate how much cooking, cleaning, and entertaining takes out of a day, even if it is with family. But I must unfortunately report that my health has hindered me too. And the pain is back with a vengeance.

Although in e-mail my doctor and I have talked about the need for pain management, we have not addressed it squarely because the other disease issues seemed to take pre-eminence. Tomorrow I will see him with two main questions in mind: how to rule out amyloidosis (is it even possible?) and a plan for the pain. I feel as if someone is continually scratching their fingernails on my nerve. And you know that feeling you have when a part of your body has "gone to sleep" and then the prickly feeling as it comes back? The right side of my tongue is forever in that state along with nerve twitches and numbness. Ache, like a thousand toothaches, has spread up my face to include my nose and cheek. No wonder I have a persistent headache.

Back to exhaustion. Saturday Denise and I spent the afternoon with dear friends Lisa and Spiro from Albany. We enjoyed every minute of it. When they left I turned to Denise and said I had to go to bed immediately. I was in pain and exhausted from fighting it back. Every two hours I took 400mg of Advil and lots of the gabapentin. About three hours later I began to feel human again and we stayed up to watch some videos for awhile until we fell asleep. I slept 12 hours!

I still have a story to post, one I started but have yet to finish, and I am not know sure how it should end. It is about a spiritual experience I had in September that put me on the road to the second MRI, the surgery ... and now this. I wanted the "this" to be more definite, a common retelling of how one meets obstacles in life with fortitude and courage and rises above it. Granted, those kind of stories are overrated. I am now in the midst of an experience that calls for real strength, not the cheap temporary kind, but something that demands genuine depth and endurance.

I'm still working on it.

Pain is exhausting ... I have more energy!

2008-12-23T06:01:00.000-08:00

Before the aftermath of this surgery I did not know the meaning of pain is exhausting. Anyone who has had chronic pain often says that as the first salvo in describing the experience; it precedes how much something hurts, where and why. Add me to the list. One spends virtually every minute of waking hours negotiating the rest of life against the pain.

I revisit this primer of pain management in order to offer the contrast: I am starting to stop doing that because the pain in general is now so much more under control of the medication I am taking and in particular because yesterday I had those numbing shots in my face and they seem to have made a difference. Within about 15 minutes after the shots I was numb on my right side (a harbinger of the future) but without the ache and pain. Instinctively, I exhaled with relief and then went about the rest of the day with so much more excitement and vigor than I have been able to muster since the day before the surgery. Dr. Strominger cautioned me that these shots are not intended to last; in fact, they may not last beyond a couple of hours or days, depending on why the person is receiving them. But he also said that the shots may have a calming effect on the nerve. Say no more was my response in the chair, let's get to them!

I confess I am a little low on tolerance for any medical procedure at this stage. Needles being stuck in me seems to be all the go lately, and no masochist, I, if I never saw another one again it would be perfectly okay. The first shot pricked and stung considerably, because it was on my forehead where I still have well more than half sensation. The second one under my eye, near my nose, hurt less because the sensation is less than half there already. But the experience of not taking thought and energy to monitor and navigate pain every minute was worth every detraction. I am writing the morning of the next day, and the ache is always at its lowest ebb in the morning, so I can not say for sure how much better I will continue to feel today. I can say, however, that I woke up and was thinking about a few different things for, oh, maybe 10 ten minutes or so before I thought: my face, the nerve, the pain, where's my medication ... nothing like that, just normal life stuff. A simple change. Pain was not my first waking thought! What a gift!

While I have tried to keep up with various aspects of my life by doing some work, maintaining the house, being with the children, and, as I have reported, seeing some friends, and celebrating a wonderful wedding, I am completely behind in everything! Don't even mention C-h-r-i-s-t-m-a-s to me! So today I will attempt in short order to start to enter the season. I may run the risk the overdoing it, but it will be for a good cause. Yesterday after the doctor's appointment I stopped at the venerable "vegetable store," the name my children gave it when they were young, Ludgates (a glorified farm stand but with good quality foods), and did some shopping. Over the years I have traded small talked with a woman who works there and also at the Farmer's market. I saw her looking at the ink dots on my face, the spots where the doctor makes the injection and which I had tried to clean off before I left but they made a temporarily indelible mark. There was no one else there at the moment and so I took a breath and told her a Cliff Notes version of the story. By the end of the conversation she shared with me so much of her own life and experiences with health and family. Still not advised to carry heavy objects, I grabbed one bag and she grabbed the heavier one to take out to the car. We talked the whole way. I now have not just someone whom I recognize and to say hello, but someone whom, at least a little bit, I now know.

The Christmas season began for me in November, with so many great people giving of their time, concern, cards, notes, gifts, experiences, compassion and love to me. Gratitude has never been far from my emotions. What signals the season for me now is that I feel ready to reciprocate, to give back to each and all in any way that I can. That energy, that love and happiness for others, is the meaning of Christmas for me. Off to do shopping!

P.S. I am already working on my story, which will be my Christmas gift to readers, to be posted on Christmas Day!

Fourth Sunday in Advent

2008-12-21T09:15:00.000-08:00

The bone marrow test came back confirming the MGUS diagnosis, but it did rule out the multiple myeloma!

My primary physician, Adam Law, is now going to request that the UPittsburghMC send the amyloid sample to a specialist for further analysis. Apparently, exactly how the proteins line up on the site has a relationship to what kind of amyloid it is. A primary amyloid would be characteristic of systemic disease. A secondary amyloid would suggest that it is "reactive," or in response to a particular inflammation. Preliminary tests done by UPMC pathology pointed to the latter. Because amyloidosis is such a dangerous disease -- most people diagnosed with it have an 18 month prognosis (largely because they do not know that they have it until it is quite advanced and affecting the vital organs), it is entirely appropriate that the sample taken during the surgery be tested extensively. I am very hopeful, however, that I do not have the systemic disorder. My EKG was good and the 24 urine test showed no kidney malfunction. I may be coming out of the woods of possible further disease or disorders following the surgical finding of an amyloidoma on the trigeminal nerve, certainly at this time. And as noted in the previous blog entry, all of this experience may be a gift because with the MGUS diagnosis I can be vigilant about being tested in the future for a range of possible disorders, which provides a great advantage in treatment and control of disease, and all of that is preceded by a big IF.

Last night Denise and I attended a most resplendent wedding of the daughter of our close and wonderful friends Clare McMillan and Karl Pillemer. Hannah Pillemer, a young and talented film maker, married Michael Seville, a film professor at Boston College, at Sage Chapel on Cornell Campus, followed by a grand, stylish bash in Memorial Hall of Willard Straight Hall. The bride was outstandingly beautiful and the groom amazingly handsome. Family members beamed with pride. Perhaps it is because we love this family so much that I felt more personal joy in the celebration of their vows than I have ever experienced as a guest at wedding. To be a part of something so filled with love, commitment and bonding of friends and family reminded me all the more of what it means to be truly alive.

Today is the fourth Sunday in Advent; Christmas is just a few days away. As a historian I know full well the pagan origins of this holiday. That knowledge only makes the season more meaningful for me. People in the western world in the northern hemisphere for thousands of years have brightened up dark nights with light. They have looked towards winter with anticipation. Hope to survive the short days and see the first sprigs springs eternal indeed. I think I know exactly what those traditions mean.

Denise just now has found the invitation to a party we are to attend in Rochester today. She got the 5:30 part right, but it turns out to be when it ends not when it begins. I have many, many words of appreciation to say, but I am told to get up and take a shower NOW! I also have a story to tell you. I'll make it my Christmas gift. And in the meantime allow me to burst blessing upon you all with the full measure of holiday joy!

What's Going On

2008-12-09T10:35:00.000-08:00

The ENT visit went well yesterday. The ostensible reason for the visit was to check my nasal passages as a part of the post-surgical observation. Even though I am religious about nasal care (netipot, saline spray, etc.), undissolved packing and scab tissue formed in the cavity. Dr. Strominger gave me some numbing material (as luck would have it, the left nostril was implicated) and out came ... oh, never mind. Just be on notice, anyone who is contemplating this procedure for neurosurgery, it has proximity on its side but it is not altogether a proverbial walk in the park. Since then the last two days I have experienced congestion in my right nostril but it is snowing outside, and I don't want to risk infection so I am just going to wait until it dissolves through the normal process.

The real reason I was glad for the meeting is that Dr. Strominger helped answer some of my questions about what to expect with the deterioration of the nerve. First, he confirmed the outcome: the nerve will atrophy and die. None too soon, unfortunately. Given the pain, the nerve now holds no particular value to me; I no longer have any normal feeling on that side sufficient to outweigh the discomfort. I also had the same thought he expressed extemporaneously: if the surgeons knew then what we know now, would they have removed it? My answer: "absolutely."

At any rate, he discussed with me the option of having shots in my forehead, nose and chin in the middle of my face to numb the nerve. Never mind the irony. I made an appointment with him for the Monday before Christmas for this procedure and will take time between now and then to explore this option. Without some form of pain management I cannot go back to work, so I must pursue something.

Let me also come clean and explain what else is going on. After the surgery I had a blood test to explore why or how I acquired this amyloid. The test confirm a diagnosis of a name that reminds me of Kundera's book "The Unbearable Lightness of Being:" Monoclonal Gammopathy of Undetermined Significance (MGUS). If you do a search with that name, your first hit will be to the Mayo Clinic, which discovered and created the diagnosis. The test identifies certain proteins at higher levels than a normal range floating through one's circulatory system. Elevated levels could mean nothing but do suggest further testing and in my case it would be for amyloidosis and a bone marrow cancer called multiple myeloma. Organ failure indicates amyloidosis and so yesterday I turned in my 24 hour urine collection (a barrel of monkeys) to check creatine levels. I also had another blood test to see if there are spikes or a steady state of the monoclonal proteins. Curious, because four years ago as a part of a regular check up the blood report noted slightly higher than usual protein levels and I recall the N.P. asking if I had had an infection. I didn't recall anything specific and she shrugged it off. Coincidentally when I asked the surgeon about how long he suspected the "thing" had been growing, he said about four years. Lesson: follow up on even seemingly unimportant test aberrations!

I go to the oncologist on Friday to talk about the next step in exploring the multiple myeloma. Unfortunately, I already know what he is going to say. I have to have a bone marrow aspiration (ten barrels of monkeys!). I have now done enough searching on the Internet, communicated with my doctor and consulted with others informally to know that it is standard procedure. When I first learned about it I almost could not tolerate the thought of another needle, but a week has passed and I have contemplated the matter. IF confirmed, early detection is the best chance to stave off the effects of this otherwise incurable disease.

What if I don't have it? I join the millions of other people who sit in anticipation of news about serious illness or cancer. And my response will be one of profound compassion for those who must go on to confront the challenges of treatment. With the MGUS on the table I will go on to be tested at appropriate intervals. It may be that this entire journey, from schwannoma diagnosis through surgery to this amyloid adventure, is a gift. I have learned that I may have the warning signs of disease. With frequent testing to nip it in the bud, so to speak, this information could be a life expansive proposition.

What if I do? I'll let you know :-)

Cheers, Tracy

Second Sunday in Advent

2008-12-07T08:17:00.000-08:00

I now know why athletes use steroids. For the first three days of taking them I felt great! I had energy, the pain was significantly mitigated and the numbness, while ever present, did not have the accompanying ache that emerged full blown after the surgery. The dosage was not high and the time on them was a short six days. But I also recognize why the checkered reputation, the side effects are tricky. Redoubled fatigue. I slept 12 hours one day, and on the days when I slept less at night I took a nap later. Cold sweats and a patina of low spirits also made the transition a challenge. I can hardly imagine what the experience must be like for people who take very high doses, for example intravenously to arrest the inflammation of M.S. The hope that this dose would arrest the inflammation of my nerve has dimmed; the pain has returned and is constant. I have come to the conclusion that pain management must become a part of my recovery.

Trigeminal neuralgia is a debilitating disorder. I don't have it but I have learned a lot about it because it comes up on searches involving anything "trigeminal" very quickly, and because on the previous blog, The Schwannoma Experience, someone from the community of people who struggle with the disorder posted a thoughtful note and invitation to join their organization. I well might do so. I do not have the blinding, electric shock feeling but because the amyloid is choking off the nerve I have, as I have described, persistent, aching numbness with pain throughout the right side of face, mouth and head. Once isolated to numbness around my lips and chin, the numbness tingles and hurts now up my cheek, in my gums and cheek, around my nose, through my ear canal and increasingly around my eye. A test of my response to stimuli on left and right lashes last week at the doctor showed a markedly reduced response on the right. So in addition to pain management I very much need a knowledgeable doctor to provide an experiential prognosis so that I can prepare myself, my family, friends and colleagues.

In the meantime, here is what I have been doing. First, I have been trying to keep up with work that crosses my computer and attend some selected meetings by phone. Second, I am still involved in taking a number of medical tests. These tests are for the purpose of understanding what, if any, underlying disorders might have caused or be in conjunction with the amyloid. Third, this weekend I may have pushed the limits a bit. On Friday afternoon I drove to Rochester. Denise sang in the Eastman Chorus at the Eastman Theater and I could not miss the performance. We stayed overnight in Rochester so I could visit yesterday with two beloved, dear friends, Paul and Lauren.

Paul I have known since third grade. He is like a brother to me. Maybe that is why I am so proud of him: a coronal in the Army Reserves, since 9/11 he has been called in four times (an enormous sacrifice for his wife, two children, mother and his professional life as an attorney and businessman), including two tours in Afghanistan. Sadly, his mother passed away last week. She was a beautiful, brave and compassionate woman who stared cancer down four times and lived through the treatments and their awful side effects for the love of her family. She is one of the few people ever to ask to visit my brother, Peter, in a group home in Victor; we went together to see him about 5 years ago, and for that kindness alone I shall always remember her. She was a holy person, who modeled love as a gift to me and for everyone who knew her.

Lauren, and another friend Mary, and I met at the beginning of high school and we have been to each other all these years like family. Here's a sign of the depth of that friendship. Throughout this entire adventure, from the 18 months of unexplained symptoms and false diagnoses to initial actual diagnosis to surgery, and now to more pain, tests and uncertainty I, who gets choked up when watching a well-made heart string commercial, cried only once, a year ago, when in distress over the (false) diagnosis that I had had a stoke, I tipped over a cup of coffee accidentally on my computer, but not since ... until I saw Lauren. She is a nurse practitioner, and her partner is a doctor, and all she said to me when I walked in was something about knowing what I went through. If that is not the definition of family, someone with whom you feel comfortable enough to show vulnerability and express emotions, sometimes for better or worse, I do not what is. It was great to see her.

Last night Denise and I came back to her house in Penn Yan. Poor woman, Denise has been living out of a suitcase for so long now that all she wanted was to be in her home for awhile. Out the door at 8 this morning for a service in Rochester, she will come back later today and we will make dinner. For all that Denise has done for me, it seemed a small thing for me to honor her simple desire just to be home. Quite honestly, I am exhausted, and at 1 p.m. I am still sitting in bed as I type this message. I would have like to have gone to church this morning, here in Penn Yan, where Denise had been the rector, to see the many wonderful people in that community. I also miss the Advent hymns, Emmanuel especially. Advent, a time of anticipation. It goes with a dream I had the other day while napping, of being in my childhood neighborhood (which was by the airport in Rochester) and watching a plane descend rapidly, I fear it will crash, it comes down to the level of the street I am on, Westfield, flips over acrobatically and flies perfectly. With renewed energy, inspired by the plane, I start to run just for fun.

Thanksgiving Weekend

2008-11-30T00:47:00.001-08:00

I have always had a tendency toward insomnia in my adult life that this methylprednisolone exacerbates. Methylprednisolone is the prescription name of the steroid I am taking to calm the inflammation of the trigeminal nerve. It helps, a lot. Not only do I have the characteristic energy, but it is the first time since the surgery, without narcotic medication, that I have had relief from the pain. More important, it has confined the numbness, which has been spreading since the surgery. Before the surgery I had numbness in my lips, chin, teeth, gums and progressively up my cheek. In the weeks before the surgery I began to notice some slight mastication problems and an increasingly persistent dull pain along my ear canal. I also felt an overall tension in my head on the right side.

Immediately after the surgery all of these feelings intensified and the numbness spread up my cheek and even, to a lesser degree, in the area around my eye and up to my forehead. Without the methylprednisolone, the earache and the pressure subsided a bit, but the new painful sensations hardly made those gains a cause of overall celebration. The pre-surgical mastication problems increased significantly, to the point where post-surgically and as recent as yesterday afternoon not only has it been difficult to chew but even to open my mouth widely. I also had some odd right eye problems, multiple vision. (Although those symptoms have been erratic, and may in some part be a hang-over of a complication of lasix surgery a few years ago, I have written this entire blog by closing that eye.) By last night, on my first day of the methylprednisolone, I could start to open my mouth more widely and as I type this blog, between 3 and 4 in the morning, I feel my bite come together for the first time in two months.

I decided, contrary to my earlier post, to wait until after company to begin this course of the drug. Upon reflection, and at Denise's suggestion, I recognized that I did not know exactly what to expect and did not want any surprises while Denise and I entertained family and friends at our place on Keuka Lake. It sounds like a house full, but it was not. Denises beloved cousin Karen, Roz, Karen's husband and their 12 year old daughter, Deldar, drove 12 hours from Maine to be with us over most of the weekend. On Thanksgiving Day Melanie May, from Rochester, Colgate Crozier Divinity School (where Denise works in addition to the Rochester Episcopal Diocese) and life partner to Brenda Meehan, erstwhile teacher and subsequent dear friend of mine (who passed away in 2006) together with David Smith, rector of St. Mark's in Penn Yan (where Denise had been the rector) joined Nikko, Sam, Denise, Bonnie and Rob (Denise's children) for dinner. On Friday we also had some wonderful company from Penn Yan stop by for a lovely, early evening. I enjoyed the time together thoroughly, but admit that I was in discomfort on Thursday and in pain most of the time on Friday. I maintained on Thursday a continuous course of Advil, which kept something of the full-fledged pain at bay, but on Friday I decided to see how I felt without it. Not good. So first thing Saturday morning I popped my first two tablets of the 4 mg. dose of a total of 6 tablets taken over the course of the day. No wonder I can't sleep!

The short, light dose of this drug begins its decent tomorrow and will taper off throughout the week. Perhaps it is my penchant for anticipatory anxiety to already have concerns about going back to how I felt the day before yesterday but beneath my delight at feeling better is the concern that it is temporary. Optimistically, I might expect that this course of the drug might bring the swelling down to pre-surgical levels, or perhaps even (wildly optimistically) control for the swelling of the nerve due to the amyloid to an appreciable degree. Herein lies a number of questions I have for some doctor soon. If the eventual outcome is atrophy of the nerve, would it have been better, had the surgeons known what they found when I was on the table, to remove the amyloid entirely? What should I expect as a final outcome of the deadening of the nerve symptomatically? Will this ache and pain remain as a constant or is it a feature of the transition to atrophy? Finally, two questions: how might I prepare myself for this outcome pschologically and is there anything from the perspective of medical science through physical therapy to alternative medicines such as acupuncture that I can call upon for relief of symptoms or compensation for the motor and sensory deficients, especially in the expectation of returning to work and what otherwise I hope to be a "normal life" not only post-surgically, but post right trigeminally :-)

A minor digression on the subject of nasal care for any reader who inquires of this blog further information about the procedure itself. Remember when last I said the stents were out and I could breath fully? That was evidence of my optimistic side! Relative to having the stents, not having the stents was an improvement, but it did not take me long to recognize, post posting, that I was still quite stuffed up nasally. I continued to spray my nostrils with a saline solution administered originally in the hospital (somewhat unproductively so long as I had the originally packing in my nose, I might add, because it contributed to the incessant dripping, but it did establish the habit of so doing, which might have been the key idea to the practice while still under constant medical attention). Post stents, I have taken up the habit of a nostril wash which I was told I must use a couple of times of day for three months until the nose hairs regenerate and do the job of sweeping debris automatically. But speaking of debris, I spent about fifteen minutes every two hours of Thanksgiving Day discovering what lay in my sinus cavity. Enough said. I would still chose this surgery over the traditional post-cranial procedure, but in the interest of full disclosure in an era in which I expect more surgeons and centers will offer this route to the most interior locations of the skull and the brain generally, I should not sugar coat its impact. I wonder whether that congestion might have contributed to my eye problems last Sunday, especially because, for obvious reasons, everything from the post-surgical black eyes to this expiation has been accentuated on the right side of my face.

Well, it is almost 5 now, (although the post will show up at Pacific Time) and I might try getting more sleep before morning. Over this holiday I thought of the many, many people who have read the blog, written or called with good wishes, sent the absolutely beautiful flowers (truly, each and everyone has been a cause for celebration and cheers me enormously!) and the wonderful Italian food basket from my beloved Aunt Angel and Uncle Joe in Rochester and hoped for all a happy holiday. Despite my aches and pains, I had the ultimate great fortune of getting to spend it with my immediate family, and while I might wish to enjoy still more extended family and friends, I could not ask for more happiness than to kiss my darling Denise and watch our beautiful children eat turkey.

Stents Out, Blood Taken, Two Days Before Thanksgiving

2008-11-25T10:01:00.000-08:00

I got my stents out this morning! Hurray, I can breath freely again. And the bonus was that the MRIs I have had revealed a "deviated septum," which I believe I acquired in my late twenties playing squash with a very competitive Cornell MBA student. I was living in Ithaca at the time, finishing my dissertation in American history and teaching sociology at Ithaca College. I remember well that after he served, smartly jumping to the middle of the court, he, six foot at least, swung his racket back and hit me right across the bridge of my nose. When I showed up to teach the next day I looked like a raccoon with big black eyes, and my students were very solicitous in their concern, if not curiosity, about how I acquired this look. At any rate, the ENT surgeons who purposefully broke my nose in order to gain access to the nasal cavity for the neurosurgery have done me the favor of rerouting my septum. At my six month post-operative MRI I look forward to seeing a perfect nose!

Yesterday Dr. Law and I spoke extensively about next steps. Today, after the stent removal, I went for a blood test for protein analysis; it should be a pretty good indication of whether I may, or may not, have amyloidosis. Neither Dr. Law nor I believe this to be the case, but of course it must be ruled out given the surgical pathology. As noted in a previous post, that disorder is a very serious one, indeed potentially fatal. I don't have any other symptoms of that disease, for example organ function problems. Also, medical literature of this rare finding of an amyloid on the trigeminal nerve notes that in none the U.S. cases (where I appear to be lucky number 14), did the patients have a systemic disorder. Third, coincidentally, Dr. Law and I have come up with the same theory about the origins of the amyloid: that it is the failed attempt of the immune system to attack an oral herpes virus.

Please, reader, note that we recognize this idea is just a theory, but it is nevertheless true that herpes viruses live in nerve cells, and oral herpes, which manifests in the lips and gums, live in the trigeminal nerve that serve those areas. Activated by stress, sunlight or low immunity, the herpes virus rears its ugly sores. The immune system tries to react by sending (protein) platelets to kill the virus, but alas, it cannot, and so, perhaps, these platelets collect and form what becomes an amyloid. At least that is my theory and I am sticking to it.

A year or so ago when I first went to a neurologist for the symptoms, I introduced the idea of the herpes virus as a source of the problem. I did so because since my first outbreak, when I was 18 and had returned from a wild spring break in Florida flush with mononucleosis, I have had subsequent outbreaks. These sores act for me as a barometer of my fatigue or stress levels, and I have contributed to their outbreak, probably, because I love to be outside in the summer biking, boating, hiking and working without putting on gobs of suntan oils, knowing, but at the time not caring much, that the sun just might incite a sore. Who would have thought it could, possibly, lead to this problem? Time waits for no woman, and getting older often comes with compromises we could hardly imagine as spry, healthy youth.

About the pain, the good doctors have not recommended any more narcotic type drugs, but have allowed me to go back to anti-inflammatory, over the counter type medication, disallowed prior and subsequent to surgery because of its blood thinning properties. It has made a difference, and understandably so, because inflammation of the nerve caused the pain. In order to maximize this advance I will begin either tomorrow or Thursday a one week course of low dose steroids. I am waiting until then because it is a bit of a regime (x number of pills one day, y another, and so on) and because I understand that the steroids mask other infections and cause insomnia. Sleep has been my best friend of late. I have clocked a highly unusual 10 or so hours a night. I want to take full advantage of this time where sleep aids recovery before launching into another minor medical adventure.

Long term outcome, assuming that no systemic disorder is involved: the amyloid will continue to grow, effectively chocking off the nerve, which will cause it to atrophy and die. I will have no feeling on the right side of my face, and ultimately mastication problems because this nerve serves the muscle connected to the jaw. At the ENT practice today, I asked for a follow up appointment or call from Dr. Strominger to discuss how I might prepare myself for this outcome, and if there are any approaches that medical science has to compensate for the effects to the jaw. I look forward to his call.

Now for a more metaphysical reflection, which at this time of year naturally turns towards Thanksgiving. My favorite president, Abraham Lincoln, made Thanksgiving a national holiday, and rightly so. If he, in his search for reconciliation of profound, awful discord that wrenched our union, could find a date to memorialize gratitude, then most certainly we can take a lesson from history and make forgiveness, reconciliation and gratitude prominent themes in our own lives. I am going to try to make it mine, and I wish for all of you, amidst the turkey, football and Aunt Mable's favorite cranberry sauce, the opportunity for spiritual renewal.

The Amyloid Adventures

2008-11-22T07:38:00.000-08:00

This first posting of the Amyloid Adventures is a continuation of the medical/surgical experience explored in a previous blog entitled "The Schwannoma Experience" at:

http://theschwannomaexperience.blogspot.com/

As I learned more in this next chapter of my overall experience, I will share it.

At this point, for more general information, on trigeminal neurologia and amyloids, please see the following sites:

For trigeminal matters: http://www.fpa-support.org

For amyloids:

http://www.iupui.edu/~amyloid/primary.htm