Epilogue to the Poem

This poem is the last posting for this blog, The Schwannoma Experience.  The surgeons discovered an amyloid on the trigeminal nerve, not a schwannoma, and so a whole new set of challenges emerge.

Today I will start a new blog entitled the "The Amyloid Adventures."  This blog will continue the story but now from the medical perspective of treating the amyloid and its deposits on my nerve.  Curiously enough, a month ago as I was driving on Route 5 in Oregon from Eugene to Portland I was surfing radio stations when an announcer said, "And now, we have someone on to talk about trigeminal neuralgia."  At the time I experienced numbness not pain, but I listened raptly to the half-hour program and learned about the experience.   I do not have that specific diagnosis, but now that the numbness is coupled with ache and pain I can certainly sympathize!

I am initiating this blog because it turns out that such a deposit, at least anywhere in the gasserion ganglion (where all the cranial nerves meet) is extremely rare, and by the best PubMed count there have only been something like 22 cases altogether and 12 on the trigeminal ever reported since the first in 1957.

So maybe in my experience there will be something to offer other people with the disorder, if that is what it is, or people who have "mystery symptoms" and no good diagnosis or people who have any variety of trigeminal trouble, including neuralgia, who might find this new blog of interest.  

A bit of anxious anticipation introduces this blog because as many know "amyloids" are sometimes associated with chronic neurological disorders.  I have asked that more analysis be done of the tissue removed from the nerve during the surgery, and as of this posting the results are not in.  Apart from knowing that I should have another MRI in six months there is no course of action going forward.  So there is yet a lot to learn, and lot to experience (especially as I attempt to go back to work full time) and a lot to share about what is to come.

Welcome to this new blog: http://amyloidadventures.blogspot.com

Meckel's Cave

Meckel’s Cave

Virgil, Dante and Da Gama, Listen!

Your legacy lives on with Kassam.

Guide to the exiled from traditional medicine,

Explorer of the deep recesses of the brain.

Nel mezzo del cammin di nostra vita

mi ritrovai er una selva oscura,

che la diritta via era smarrita[1].

Spelunkular, par excellence,

exploiting the geography of the skull

proximity of the nose to the cave

tailoring tools for the mission.

Ahi quanto a dir qual era e cosa dura

esta selva selvaggia e aspra e forte

che nel pensier rinova la aura![2]

Swath your patient in the ancient clothes of the dead

Lie her supine, eyes taped, limbs secured,

Head completely restricted against movement for surgical precision.

Tant’ e amara che poco e piu morte;

ma per trattar del ben chi’i’ vi trovai

diro de laltre cose ch’I’ v’ho scorte.[3]

Screens are your eyes as your partner, Carrau, slices through the nose, you snake your tools

through the cavity and drill at the wall.

Io non so ben ridir com’i’v’intrai,

tant’ era pien di sonno a qual punto

che la verace via abbandonai.[4]

Penetrate now through the bone,

Stalactites and stalagmites of arteries, tissue and nerves.

Suddenly, a bright white spot reflects your light!

Unexpected deposit, it is not on the map of Meckel’s cave.

Ma poi ch’i’ fui al pie d’un colle giunto

la dove terminavva quella valle

che m’avvea dip aura il cor compunto[5]

A decision must be made:

Take the deposit and sever the nerve,

Or take what can be sacrificed for study and leave the entangled remains.

guardai in alto e vidi le sur spale

vestite fia de’raggi del pianeta

che mena dritto altrui per ogne calle[6]

Prudence dictates the course.

At least the pressure should subside.

Backwards now you travel,

Taking nose tissue for a bandage at the entry way to the brain.

Trace your steps out.

Send the tissue to pathology.

For ten hours the mummy remained motionless.

Assistants release and unwrap her to rise again in recovery.

Doctors Kassam, Gardner, Prevedello and Carrau have had far more challenging cases.

They save lives every day.

They are our modern explorers of the uncharted parts of the human body: the brain.

Allor fu la paura un poco queta …[7]

---

[1] Midway on our life’s journey, I found myself in dark woods, the right road lost. To tell about those woods is hard – so tangled and rough

[2] And savage that thinking of it now, I felt the old fear stirring: death is hardly more bitter. And yet, to treat the good I found there as well

[3] I’ll tell what I saw, though how I came to enter I cannot well say, being so full of sleep, whatever moment it was I began to blunder

[4] Off the true path. But when I came to stop below a hill that marked one end of the valley that had pierced my heart with terror, I looked up

[5] Toward the crest and saw its shoulders already mantled in rays of that bright planet that shows the road to everyone, whatever our journey

[6] Then I cold feel the terror begin to ease that churned in my heart’s lake all through the night. As one still panting, ashore from dangerous seas,

[7] Looks back at the deep he has escaped …

From The Inferno of Dante, A New Verse Translation by Robert Pinsky, 1994

Prelude to the Poem

Hello Friends and Relatives!

Home now for one week and slowly on the mend.  Recovery from the surgery has progressed nicely but that trigeminal nerve is really, really mad that Dr. Kassam and his team snaked their way into its hiding place deep in my skull to disturb it.  It might take some time before it settles down and before we know more about what type of amyloid it is and what that means for the future.

I want to take the balance of this last message to thank the many, many people who have shown extraordinary kindness to me.  The congregations of St. John's in Ithaca and St. Mark's in Penn Yan (where Denise was previously the rector before taking a position with the diocese) and the Diocesan staff of the Episcopal Diocese in Rochester have all sent powerful prayers my way.   Friends who have identified themselves on the blog have been a wonderful source of support for me.  I have so enjoyed opening up the blog and finding posts from people I know far and wide, old friends in Pittsburgh who must have been as surprised as me to find out I was there, and friends I have made across the country in my work at Cornell University and the national organization EDUCAUSE: thank you!  I also want to recognize how events such as this one has the wonderful effect of bringing people closer.  Those friends who offered interpretation of the dream have given me a gift which I shall always cherish.  My cousin Elizabeth, who has both medical and doctoral degrees in psychology, offered the thought that physical pain often touches one's emotions; with that thought in mind I have absorbed with meaning the substantive interpretations that friends have sent this way.

I have here many cards and flowers which have brightened my day.  In the evening Chase Lane neighbors have brought the boys and me delicious dinners.  My book group friends are a special team of players who remembered my favorite author, Marilyn Robinson, and so sent me her new book; I am saving it up to read over the Thanksgiving holiday.  Work friends both in and outside of CIT who have sent e-mail messages and card or posted on the blog, I miss you all very much and look forward eagerly to the day when I can return, once again be a thorn in your side as we work on some policy or another and, at home base, eat all of your candy!  My students in Information Science 515 are a talented, spirited and fantastic example both of what this generation has to offer (a lot!) and how fortunate Cornell University in general, and me in particular, are to be a part of their personal and intellectual development.  My family, both remote and here as I type, including my lifelong friends, Mary and Lauren who are like sisters to me, have been a peerless comfort.  Okay, gonna cry now, and I still have stents in my nose, so let's move on to another topic :-)  

I have posted an article about the surgeon, Amin Kassam, and his team who performed the surgery but I want to take the occasion of this last post to say thank you to Adam Law, who has tirelessly helped me here in Ithaca, and to Amin Kassam, Danny Prevedello and Paul Gardner, Ricardo Carrau and the other surgeons/residents and nurses who cared for me at UPMC.  A very special recognition belongs to Lois Burkhart, the nurse coordinator there, who is one of those people who steps into one's life like an angel and truly makes a difference.  Without her immediate intervention on that fateful Friday afternoon when I was trying to decide what to do, all of which was based on a simple e-mail inquiry and a phone call from the Orlando Airport wildly disrupted by blaring P.A. announcements two days prior, I might not have had the opportunity of this innovative approach to low skull based surgery and the fortune of a good recovery.  

I dedicate this poem, Meckel's Cave, to all of you and the UPMC medical team in particular.  My wish to all for a meaningful Thanksgiving holiday could not be more sincere.  I hope each and every person touched by this experience will be sure to call upon me and let me know how I can help you someday in a time of need.

Love, Tracy

P.S.  

My thanks also to all of you who have been so supportive of Tracy as she has gone through this ordeal.  We are eternally grateful for all of your concern and well wishes.  It's not every day that one has surgeons poking about in one's brain and we were very lucky to land in Pittsburgh.  As I said originally I went into this with Dame Julian of Norwich's famous line, "And all shall be well and all shall be well and all manner of thing shall be well" sounding in my head and once again, Julian's wisdom proved true.  All is well and we continue forward, grateful for many blessings.

 

Denise

Sunday Morning and My Dream of Saturday

Good Morning!  

All things considered, I had a good day yesterday.  From the medical perspective, I have been weening myself off of the oxycodone by using gabapentin, ironically the drug previously prescribed for the "herpes" theory of my symptoms, so I already had some on hand. Denise has shaken her head a couple times over the self administration of drugs, but this is the drug that Dr. Prevedello told me would help my facial pain when I was in the hospital, so why wait until someone prescribes what I have at home already?  Anyway, even though it is not recommended, I went off the oxycodone cold turkey, the gabapentin I think is helping and I am now wrestling a bit with headaches, which I attribute to the oxycodone withdrawl, but which should be a temporary.  Caffeine helps, so I am drinking both tea and coffee.  My father smoked cigarettes for 40 years, began as a teen-ager, and then one day in his 50's he rolled up the pack of Camels, threw them in the trash and never had another cigarette again, even though he had a restaurant where everyone was smoking around him.  Cold turkey is the family way.

Speaking of my father, I would like to share a dream I had about him yesterday afternoon during my nap.  It was so vivid and feels so powerful, although in an inchoate way.  Maybe there are interpreters out there who can help me?

The Dream:  

My hospital bed, so to speak, is a parking place on South Avenue towards Main Street, where my father's restaurant used to be in downtown Rochester.  Everything is as it was in the 1960's before the urban renewal project of the 1980's that changed the street dramatically.  I am okay there, I don't really have a bed, am lying on the street with just a pillow, and people casually look at me as they walk by more to wonder how I am doing rather than why I am lying there. Two friends (not identified in the dream) come by, I get up and we start to walk to the restaurant.  It is snowing, and I have no shoes on, but that is okay, I am not cold, I have on some white sheet type outfit and glide through the snow.  

We come to my father's restaurant and when we go in I can see that he is remodeling it completely.  It still has exposed brick on one wall, but a sizable dip in the floor that creates a kind of valley as it rises again towards the rear of the building.  Black wood flooring, and a few tables, all very contemporary, even chic, but still a work in progress.  My father is in the back and he looks younger, perhaps as he was in the 40's or early 50's (when he looked a little like Robert Di Nero).  He is excited about the renovation and says that he is not yet sure of exactly what he wants to do.  He also shows me an extension behind the back of the building.  It is a cavernous space, filled with scaffolding and then single planks of wood laid out high on the scaffold that serve as a path though the addition.  I walk, discover two paths, and take them both to their end where the planks stop but the building continues on.  I come back to the main building, run up to my father very excited about all the possibilities.

Wistfully, he tells me that he and my mother have had differences over the design.  Just then I see her, as if she were in a music video.  She, too, is younger, out on the street, on a bus that she gets off near the restaurant.  A Madonna song that my dream made up plays in the background, not any one song that I know of hers, but something reminiscent of the "Remember Me" CD. This scene fits the memory of my mother well: stylish but distant, sad but sharp, maybe she wishes she could go someplace else (the bus), and lyrical like a cross between a Yeat's poem and a Eugene O'Neill, full of Irish fury and Celtic mystery.  

As she comes into the restaurant I turn to my father and say, "Don't worry, I can help, I will help get you guys through this trouble, I promise you, you will have a beautiful design."  I run excitedly to my mother, but the dream fades away.

The End.

Tomorrow: Meckel's Cave.

Home in Ithaca!

Last night around 9:30 we arrive home in Ithaca.  I am sorry that we have not posted more information in the last few days or a lead up to the trek back, but circumstances drove us.  We suspended making any specific plans until I felt more confident about leaving (naturally, I am concerned about a leak) and up for the drive home (even though, of course, Denise is doing the driving).  

Although Dr. Kassam allow me to leave Pittsburgh, as it turned out the ENT surgeon also had to approve.  We did not know that exactly although I did know that I had an appointment next week to see him.  Friday morning my left nostril was so occluded with the last of the serious drainage that we made an appointment to see the resident (the ENT surgeon, Dr. Carrau, is with Dr. Kassam on a trip to Japan).  She helped me a great deal and truly for the first time I could breath exclusively through my nose.  (This morning it is already a bit blocked so I am back to the dual method.)   When I asked her about the appointment next week, the answer evolved into an approval to return home.  I have already made an appointment with ENT practice here, I have to be see weekly for awhile, keep the stents for at least two more weeks, and then do some weird nose "cleansing" process for 3 months until the functionality of the nose hairs return.  I have in my hot hand a copy of the ENT surgical report as a way of explaining to the ENT doctor here the long, strange trip my nasal passage has been on.  In the meantime, I have no sense of smell, so don't ask me to identify any varietals :-)  

Denise and I left the hospital about 1:30 and pretty much in the moment decided now was the time to come home.  Thank heavens we did, because it was a beautiful day yesterday, unseasonably warm and sunny, but today is typical cold, rainy November.  

Not knowing exactly when I would come home, Bill invited his sister Annette to come down and spend time with the boys.  Annette is a wonderful person, retired school teacher in one of the most problematic Rochester city schools, who took care of both of her parents while ill with the bone cancers that eventually took them.  She runs triathlons, has climed Kilimanjaro and is a lot of fun for the boys to be around, so as much as I would like to see Nikko and Sam I neither want to ruin their fun nor overdo my energy allotment level in one swoop.   

Then this morning at about 9 the phone rings and it is Nikko.  I think he is eager to talk to me on the home phone to prove my return, but no, he is outside the door without his key and needs to get in, and I think, wow, he is so eager to see me, but no, he is singing tonight in a concert and left his clothes here.  Playing the role of every stereotypical Italian mother I call out to him, "Nikko, for heaven's sake, come up and give me a hug, I have just returned from BRAIN SURGERY!"  He hugs me just fine, talking all the time about the performance, the chorus and the director.   My god, how I adore that boy, and Sam too, they are beautiful, passionate and funny.  The other night Sam talked with me for a half hour on the phone about the difference between history and social science -- really, and I did not put him up to it except to challenge his statement that "you don't need to learn history."  I started my lecture about "those who fail to learn history repeat it" but he was already off and running about how history is the "what happened" and social science is the "why people do things" and the latter is more important to know that the facts about the former.   I love these boys.

So we just wanted to let everyone know this development.  I am trying to write personally to everyone who has written to me or read the blog, but I tire easily so I am taking the correspondence one step at a time.  I do love you all.  You don't go through something like this experience without going down deep into one's "soul."  I found abundant love in mine.  

When will we end this blog?  When I have finished my poem, "Meckel's Cave."  I started it in the car yesterday and plan to work on it later today.  I hope anyone who is reading this blog today has a wonderful weekend and stay tuned!

1998 Medical Journal Article Similar to My Condition

This is the only medical literature doing a simple Google search that turned up something like that which has been diagnosed for my situation.

http://www.ajnr.org/cgi/reprint/19/10/1853.pdf

And more recently I found this article; for a recapping of all the known cases of trigeminal amyloid, go to table 1 in the document.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2095122

If this is the definitive account, then I would appear to be lucky number 14 since the first recorded in 1957.

Check this out...

If anyone would like more information about Dr. Kassam, his team and their approach, this link tells an amazing story:  http://www.neurosurgery.pitt.edu/media/pdf/kassam_pgh_prof.pdf.  

And now for our next act....

Denise
Well, as Tracy said yesterday, brain surgery is not for the faint hearted. I'm here to tell you that assisting in the removal of nasal packing after brain surgery is not for the faint hearted either! Tracy was feeling pretty good (all things considered) yesterday, but had a rough night, with a lot of bleeding and she didn't sleep very well. We had the noon appointment with the ENT folks for removal of the packing and were glad we'd be able to ask someone about the bleeding issue. When I returned from my morning walk, Tracy informed me that the surgeon's office had called and wanted her to see Dr. Kassam this morning. So we ate breakfast quickly and got ourselves down there. The waiting room was packed and we ultimately had to leave Dr. Kassam's office to go to the ENT office.

When we arrived, the resident who had seen Tracy last week came in to tend to her and said it was too early to remove the packing. I was rather confused, as the office had specifically told me yesterday (when I called for an appointment for that purpose for Thursday) that she could have it removed today. Tracy gently started to question the resident about the confusion but after a while I could contain myself no longer and jumped into the conversation with a litany of how we had come to be there today for the purpose of removing the packing. The resident then went to call another doctor on the team to see what they thought. When she returned she said she could remove the packing and then proceeded to do so.

As she was in the midst of removing the material she turned to me and asked if I could do her a favor. I said, "sure," and while Tracy thought she was going to ask me to leave the room, instead she told me to hold the light up to Tracy's nose while she finished removing the packing and readjusted the stent that had come loose in the removal of the packing of the right nostril. Trust me when I tell you that anyone with a weak stomach or who gets woozy and the sight of blood and other bodily fluids would have been on the floor. The "packing" resembles --- how shall I put this? ---- women out there, think of an item that most of you have had occasion to use on a monthly basis during your childbearing years....need I say more??? Tracy was fine through most of this procedure although by the time the resident had pulled out the packing in the second nostril she was "lightheaded" and had to sit very quietly for a bit before she struck up a conversation with the resident about her medical school training.

Tracy here: So then we went back to Dr. Kassam's office where we were called in immediately. It turned out that Dr. Kassam is headed out shortly to Japan and wanted to be sure that he had a chance to talk with me about the pathology. Don't be concerned, but together with me please be curious. It turns out the "tumor" is no tumor at all but something called, and I asked him to spell it when he first said it, 'an amyloid.' You biology and science people out there, expect a follow up call from me to help me understand this 'protein' that in my "exquisitely rare" (Dr. Kassam's phrase) case has, as a deposit, caused havoc with my trigeminal nerve. Notably, in the pre-operative discussion he did reserve judgment as to whether the MRI revealed a schwannoma specifically. He also showed us the post-operative MRI to explain how little of the highlighted mass he removed; had he "chased after more of it" he would have been severing the nerve itself. To the obvious questions of what does this all mean for the future, he suggested medication to calm the nerve down now, sixth month MRIs, and if there is a recurrance that it be treated "medically." I believe he means treating the symptoms with steriods to reduce swelling although much work lies ahead for me to learn more about this new term and find the best medical approaches for it, preferably proactive.

Should I have had this procedure, and if so, between the sub-cranial and nasal approach, was this the right one? Absolutely, I should have had this procedure. Dr. Kassam and Dr. Prevedello both noted the "tension" in the nerve due to the deposit. Even the small amount that he resected, he believes, will release some of that pressure. He provided me no guarantees but also said it is possible I could get back some of the feeling I have lost as a result of the surgery. ("From his lips ...") Also, and important, had a radiotherapy treatment been applied without the surgery (which served as a biopsy) it would not have worked, in fact it may have done even more damage due to swelling. The approach was also the right one. The amyloid deposit was just on the other side of the skull accessible via this nasal cavity; to have come upon this very unusual condition at the end of the more invasive procedure, which transverses neck, skull, arteries, other nerves and the brain, would have not been "worth the candle" as we used to say in law school. And I can say that although I am still very tired and am struggling with facial pain and discomfort around the clock, I have no doubt that recovery would be far more involved had I chosen the more traditional approach.

To our complete surprise Dr. Kassam said, "go home" on his way out of the door. "To Ithaca?" I leaped up after him to ask. And he said yes. I will have to find a good ENT person to remove the two little plastic straws stuck up my nose (any recommendations?). I also determined tonight that before we leave here I want to have a plan worked out with Dr. Kassam and Dr. Law's office should the worse thing happen: the skull incision, covered over by the interior parts of my nose as a natural bandade, come loose and brain fluid leaks out. Originally that was the reason his office gave for the extended stay here in Pittsburg, but with Dr. Kassam's blessing, and I hope with a plan, perhaps we could leave in a couple of days.

Friends, we will let you know any more significant developments via the blog. Even if all systems are 'go' for an early departure, we will not leave immediately if for no other reason that while I can have little bursts of energy, the operative word is "little," as learned today from yesterday how easily I get tired. In short, I am too exhausted yet to make the trek home tomorrow at least but will start to work on my plan to come home early. The one thing we know for sure at this juncture is that the title of this blog is wrongly named: it should read "The Amyloid Experience!"

Out of the Hospital

Brain surgery is not for the faint of heart!  What did they do for 10 hours?  I understand that the first two hours were to position me on the table.  Intubation speaks for itself.  Staff tape the eyes shut to prevent against corneal scratching.  The gooey stuff all over my head suggests that I must have resembled a mummy when they secured me to a table in an intentionally dark and cold room.  The doctors manipulate the tools, specially designed for this kind of surgery, through monitors.  First they break into the sinus cavity.  Next they snake around the cavity to the bottom of the skull where they drill a small whole to access to brain base, where brain, nerves, carotid artery and spinal cord meet in something of ground zero of the entire nervous system.  Then they begin the task for which they made all of these preparations.

Doctor Prevedello told me that they saw a hard white core as they approached the nerve.  The tumor was not a schwannoma after all, but a fibrous mass that has grown within the nerve itself.  A schwannoma would have been preferred.  As a tumor of the nerve sheath, it is usually made out of a material that the surgeons find easy to remove and it does not have to involve the nerve specifically.  This tumor does, and will.  Had they cut out the tumor completely they would have severed the nerve.  In order to preserve what they could they cut out the white core and left the surrounding area.   It is even more rare than a schwannona, and there is no known cause.  

Recovery has not been easy.   First there was the breathing.  I woke up in the recovery room, I kid you not, to the following statement:  "The computers are down."  Good God!  Breathing difficulties quickly overwhelmed my humored sense of coincidental irony.   A nurse attempted to place a thick floppy plastic mask over my mouth after I heard one say that my oxygen level was low.   The mask made me feel like was truly going to suffocate.  Not only did the endoscopic approach require a complete packing of my nose and the extubation swelling of my throat, but I could feel a bunch of glop down there.  I fought off the mask but could not get them to understand I needed help to sit up.  I began repeating firmly: take me to the room.  I knew that once I got upstairs either a nurse would help me or I could communicate to Denise who could get some water and a basin.  It is now the first thing I remember in the CCU unit.  I swished the water around and sure enough ...

Second was eating.  Breathing through my mouth was such a chore I could not imagine taking precious seconds away from that process to chew and swallow.  Well, just swallow, because while I worked through the eating exercise with soft foods, the pain in the right side of my face, including teeth and gums, makes chewing unthinkable.  Pain management is my third struggle. What used to be numbness is now wildly sensitive, although in most places a numbness lies beneath that sensitivity.   While I still believe I made the right choice about the procedure, it is also true that this approach compounds facial pain.  Once I had enough food in my stomach to accept the opiate type of drugs without threat of nausea, I have taken them gladly.

Now for the good news:  I have the loving care of my family and friends!  Every single communication has meant the world to me.  Denise has told me about posts, e-mails and calls over the weekend from dear friends in Ithaca and Denise's parents in Oklahoma and having just read them all now has lifted my spirits tremendously.   I feel so very fortunate to have made genuine relationships with wonderful people, including my student Ben, over these last seven years of work.  These friendships in Ithaca and around the country are the best part of the job! I am blessed with a loving family spread across the United States from Hawaii, California, Texas (thanks for calling, Audrey!), Illinois, and of course Rochester, Angel Nardone especially, and the East Coast, and friends who are like family, the Swensens, who took Sammy, and the Guiliani's, who took Nikko over the weekend into their hearts and homes.  I cannot tell you how much it means to me to know that in addition to Bill they have the warm embrace of your families to comfort them.  And after I click on "Publish Post" I am going to give Denise the most appreciative hug in the world!

Denise tells me that the ENT just called to say that I can go tomorrow to get the packing out of my nose.  I believe the stents remain in a for a few more weeks but the prospect of breathing through my nose again feels liberating.  And hopeful.  Without an emergency, you wouldn't go into this surgery if you knew how difficult the first 72 hours of it would be.  But with the help of my friends I am already looking out towards the other end.  Blessed are those who give comfort.  However you count your blessings, secular or beyond, I wish you that kind of day.

Love, and thank you, to you all.

Out of Hospital

Well, she came back to the apartment today. She is very tired and still struggling with the pain, but doing a little better all the time. She managed a shower in the hospital and sat up for awhile watching TV when she got home. She's resting in bed now. We're watching old movies and taking it easy. I've got bottles of medications lined up on the dresser and a "chart" so I can keep track of what she took when! She is too tired today to read the blog comments or to post, but says she will post tomorrow. She called Sam and Nikko and felt better after that. Sam said she sounds "stuffed up" which made us laugh as this procedure brings new meaning to the phrase "stuffy nose!!"

Keep those prayers coming. She's still reeling from the severity of this operation and feeling a little down at moments. It's going to be a much slower recuperation than she thought. We learned today that it will be Thursday before they remove the packing (ugh!) and then the following Tuesday she'll see the surgeons for a follow up visit, at which time we may learn when we can return to New York.

More tomorrow, from the patient herself, hopefully!!

Day Three...

Well, another long day. When I left her last night, she had no roomate so the room was as quiet as it ever gets on CCU and I hoped she'd get some rest. However, she tells me they woke her at 12:30 to go for another MRI (??!!!??) and then at 3:30 she got a new roommate -admitted through the ER. You have no idea how noisy and chaotic the CCU is - monitors beeping, nurses, aides and other assorted medical personnel CONSTANTLY in and out of the room. It's truly a zoo. And when there are two patients in the room it's a revolving door. She was exhausted. The good news is they promised to move her to a step-down unit sometime today, a private room, and that sounded good to both of us.

When I got there we got her up and walked around the room a few times so she can get more steady on the feet. She had eaten some breakfast and I got her to eat soup, some vegetables and pudding at lunch. (She ate the Italian Wedding Soup but scorned the pasta - true to her Italian heritage she could not countenance the hospital pasta, especially as she couldn't have any wine with it!! - Which is another measure of her misery - she doesn't even WANT wine right now!!) When I went out for my lunch I got her some yogurt and coffee. Thank goodness her appetite is improving. She's not eating much but at least she is taking some nourishment. She managed a short nap in the CCU this afternoon. When she woke up we did a little more walking. At 5:00 we were delighted when an orderly showed up to take her to the private room on the step-down floor. What a difference that is making! It's quiet and peaceful and she is not disturbed every five minutes by someone barging in the room. We even watched a little TV this evening before she got very tired.

Her worst problem right now is pain. The facial nerve that was affected by the tumor is now giving her considerable pain. The trauma of the surgery has activated it and she is no longer numb, rather in a lot of pain. I finally managed to convince her (bolstered by an e-mail from her boss, Polley McClure) to take something stronger than Tylenol, assuring her that at this point, given that she's eating and ambulatory and the dosages of the opiate painkillers are relatively low, that she'd probably not suffer the nausea but might in fact get relief. The pain was sufficiently bad by mid-afternoon that she relented and started on the oxycodone, which did give her some pain relief and also put her to sleep. She's now taking it at regular 4 hour intervals, and I can tell when it's starting to wear off because the pain really drags her down. After her early evening dose, we watched a little TV and then she slept for almost 90 minutes, which is the longest stretch she's had since she got out of the OR! I'm hoping that tonight she just is able to sleep through the night with a minimum of interruptions.

The other source of considerable "discomfort" is the packing in the nose. If you've ever had a sinus infection, imagine that exponentially magnified. This surgery also produces the longest nosebleed in recorded history!! This too shall pass, but I can tell you, we're both counting the hours till they remove that packing. And today, both her eyes are blackened - she looks like she did a round in the ring with Mohammad Ali!!

As of now, the plan is that she will be discharged sometime tomorrow. That, of course, could change, as has happened regularly since she got there! A priest from my diocese who is living now in Pittsburgh is coming to the hospital after church to bring her communion. He has been charged by my bishop with pastoral care of the two of us while we're here. I'm lucky that just a few blocks away is an Episcopal Church (one that has NOT seceded from the union as have many here in Pittsburgh and that is gay friendly) so I will be able to get there tomorrow morning before heading to the hospital.

Thanks to all of you who are following this for your prayers. Keep 'em coming, as she still has a long road of recovery ahead. This was really far more traumatic an experience than either of us imagined. Once she is out of the hospital and back in this apartment, I'm hoping she will be able to contribute to this blog. That might be tomorrow night, or maybe Monday. We're taking everything one day at a time here! I just keep reminding myself of Dame Julian of Norwich's mantra - "All shall be well and all shall be well and all manner of thing shall be well." Amen.

The Morning After the Night Before...

Well, today was a tough one. She is, in a word, miserable. She's having pain in her head and face and is reluctant to take anything stronger than Tylenol because of the potential of nausea. The packing in the nose is really uncomfortable because she feels like she can't breathe. She's hooked up to more IVs and wires than you can imagine so even turning over in bed is a production. They had her up and walking briefly this morning and also did a CT scan. The doctor had said she could go home today, but she and I both said "No way, Jose" and they agreed to keep her one more day. She spiked a little bit of fever in the afternoon but was fine by early evening. She has not eaten since Wednesday night and that was becoming a concern to me and the medical types. I managed to coax her to eat a full container of yogurt and a few bites of applesauce late this evening, so I'm hoping tomorrow she'll be ready to eat a bit more and get her strength back.

One of the surgeons came by about 8:00. At this point they think she had a "neurofibroma", which is a benign, fibrous tumor of the nerve. As he explained it, unlike the schwannoma, which is a very soft tumor on the outside of the nerve, hers was a very hard, fibrous tumor that enveloped the nerve, i.e. the nerve ran through the middle of the tumor, which made the job of resecting it more tricky. This explains why she was in surgery for 10 hours! (It also explains why she is having pain in the part of her face that used to be simply numb. The nerve took a beating yesterday and she's feeling the effects of that now. Her face is very sensitive to touch and she's having pain where she used to have numbness. The doc says this will pass as the nerve heals. ) They took as much of the tumor as they could take without risking the nerve and tried to reconnect some of the nerve fibers after they got rid of the tumor. He said this type of tumor is extremely rare. From now on they will keep an eye on that nerve with periodic MRIs to make sure it's not coming back. If it starts to do so, they can use radiation to stop it.

At this point I expect she will be discharged tomorrow sometime. She is pretty weak and exhausted and uncomfortable but I hope if I can keep her eating she'll get her strength back before too long. She may be able to post to this blog by Sunday night.

Thanks for all of your concern and prayers. Keep the prayers coming as she is still feeling pretty bad so healing energy is definitely called for!

Surgery Successful

It's 12:28 and I just got back to our apartment. It was a VERY LONG day. We arrived at 5:00 AM. At 7:10 they wheeled her into the operating room. I went for a walk and got back about 8:25. At 9:00 the attendant in the family waiting room came to tell me that they had just started the surgery. Apparently, those first two hours in the OR were "prep" for the surgery! At 2:45 they told me things were going well and I'd get another update at 5:00. At 4:00 they told me the surgery was done and she was going to recovery. I spoke with the surgeons briefly at 5:20. They said "She looks great! Everything went great!" The tumor was not a schwannoma, but some unknown tumor (still benign) made from the nerve tissue of the trigeminal nerve. They are sending it to the path lab to figure out what it is. They said she would be able to come home tomorrow, after having another MRI. We will have to return next Tuesday for the packing in her nose to be removed.

I then went outside to call Sam and Nikko and Bill and returned to the waiting area, where I did not hear anything more until 8:00. At that time they sent me to another building in the hospital (across a bridge, down many halls...you know the drill) only to find they'd sent me to the wrong floor/wing/building!! By 8:20 I located her in the Critical Care Neurosurgical Unit at Presby Hospital. She's feeling pretty rough this evening - "uncomfortable" is the medical term, I believe. The nurse on the unit was very kind and allowed me to stay three hours past visiting hours, kicking me out at midnight, much to Tracy's chagrin. All her vital signs were great, she's drinking water and complaining of a headache (no kidding!!!) but otherwise doing fine. They still say she will be able to be discharged tomorrow, so here's hoping.

We'll try to call folks over the weekend. It's next to impossible in the hospital because the cell phone reception is virtually non-existent inside the building. I'm planning on getting back over there early-ish in the morning. The nurse said visiting hours don't start till 11:00 but if I got there an hour or so earlier than that they'd let me in anyway. More tomorrow night, hopefully a little earlier than this!

Denise

Night Before -Denise

Well, we're ready, more or less.  Five in the morning is a rather ungodly hour to report to the hospital, but I suppose for Tracy, who will be fasting, it is preferable to the later hour we originally had.  This surgery is "less invasive" than a more traditional approach, so we're hoping for a quicker recovery from the surgery.  We will have to stay close to the hospital for a couple of weeks until the nose heals sufficiently.  If it doesn't heal there could be leakage of brain fluid into the sinus which would be "unfortunate" not to mention complicated if we were back home when it happened.  We've learned a lot about the structure of the brain, head, neck and nose/sinus cavity!  Suffice it to say, it's complex and delicate.  So although the tumor is benign, the process of removing it is not!!  

We are aware of many prayers accompanying us into the OR tomorrow.  I will be hanging out at the hospital during the 4-5 hour surgery and will post to this blog tomorrow night when I get back to the apartment, but it will be late.  I intend to remain with Tracy when she is out of recovery and into a room until the nurses kick me out, which I suppose will be sometime in the late evening.  We have great confidence in this surgical team and medical center.  So while we're a bit nervous, we also know that, in the words of Dame Julian of Norwich -"All shall be well and all shall be well and all manner of thing shall be well."

See you tomorrow night.

Denise

The Night Before Surgery

There is a poem in the anatomical term "Meckel's Cave," the cavity at the base of the skull that houses the trigeminal ganglion, but its meter and rhyme as yet have not come to mind.  Medical facts prevail.  A grape-sized benign tumor on the right side of the facial nerve has created a progressive series of effects: facial, tongue, gums, teeth chin and cheek cold and numbness, tingling, discomfort, and a variety of weird and unpredictable electrical pulses and, of late, difficulty in chewing, my bite is off, and I have a persistent dull ear ache all on the right side.  

The symptoms began in April of 2007, a tingling of the nerves around the right lower lip.  I thought it was a herpes kind of cold sore, until the sensation moved down into my chin on the surface of my skin.  By July when the sensations deepened I told my doctor, who sent me to a neurologist.  Scheduling being what it is, I did not see him until September.  By then my tongue had begun to experience the same tingling, and if I rubbed it against my teeth I could feel short electrical pulses through my lip, chin and cheek on that side. He suspected a stroke, and so I went for an MRI.  It was negative ... for a stroke ... I would learn only two days ago that the MRI then, as now, shows what appears to be a schwannoma of the right trigeminal nerve III -- the facial nerve that serves exactly the areas where I experienced symptoms.

The story of subsequent diagnostic tests and misguided treatments a year ago remains for another day.  I am writing this blog primarily to give and express a deeply felt gratitude to the very many people who have and who are helping me through this experience as well as to create a single point by which family, friends and the curious can find out information about my schwannoma experience.  Denise Yarbrough, my life partner, will write it with me, because it is very much her experience as it is mine.  She is here with me now in Pittsburgh, the night before my surgery, as she has been all along listening to 18 months worth of complaints and concerns about my symptoms, frustration at obtaining a clear diagnosis, then suddenly when I did, discerning with me the best course of action.

Meckel's cave, as it turns out, is one of the most surgically difficulty areas in the human body to access.  When I first received the diagnosis, my doctor was not even sure whether surgery was possible in that area.   Within days we had more information, however: an excellent surgeon in Cincinnati, Dr. John Tew, who pioneered a procedure through the back of neck, and who very kindly reviewed my films with his team and accepted me as a candidate.  Then a friend, Christina Stark, heard of a newly innovative procedure at the University Pittsburgh Medical Center, under the direction of Dr. Amin Kassam, who uses an endoscopic nasal approach.   I contacted the center via the e-mail address on their web site and received a response the same day from a wonderful person, Lois Burkhart, who talked with me patiently on Wednesday between blaring Orlando airport announcements.   The next day my doctor sent my 2008 MRI "films" (a DVD, actually) and the day after that Dr. Daniel Prevedello, one of Dr. Kassam's team, called me to say that I was a candidate for their innovative procedure as well.  I had read an unpublished, peer review paper that he and others have written explaining the success that they have had with this new approach, and he offered his time, expertise and consideration to answer all my questions about it.  

Over the weekend, I sought to obtain information about these procedures in order to make a decision.  In the post office I ran into Joan Brumberg, who got me in touch with the much respected Dr. Ann Costello of Ithaca, who called later that day to help me talk through the issues. Dr. Adam Law, my primary doctor, in addition to all of the research on approaches and connections with doctor's offices, offered his opinion in the service of my making a decision.  On Sunday morning I talked with Vice President of IT at Cornell, Polley McClure, who some years ago had emergency brain surgery; she not only offered thoughts but made Denise and me laugh hearing about how she threw the nurses for a loop the day after her surgery by getting up unbidden and unassisted to get a cup of coffee!  And then my cousin, Dr. Elizabeth Morgan, called with expertise and family concern to guide me.   

On Monday Denise and I drove down to Pittsburgh and checked into a small apartment frequently used for situations like this one: where people come to stay for medical treatments for extended periods of time.  Yesterday we spent the entire day, from 7:30 in the morning until 8:15 at night going from one office to the next for pre-operative tests:  blood, MRI, CAT scan, ENT consult, EKG, chest X-ray and of course in-take for surgery with Dr. Devon Amin, who also could not have been more patient with me (I ask a 1,000 questions :-) and then the consult with Dr. Kassam and his main surgical team, Dr. Prevedello and Dr. Gardner.   I could not have asked nor received more careful consideration of my current options.  I feel completely confident in the care of these truly amazing doctors.   

The hospital called a short time ago to set the time: we must be there at 5:00 am.  I know that I am far from the most ill patient whom these doctors will serve.  But I am very, very grateful nonetheless to have a diagnosis, finally, and a plan of action to save and savor my senses.  And to Cynthia Golden I am particularly grateful not only for waiting on dinner for Denise and me to arrive last night at her home, but to her and her husband for giving me the last fruit of the grape, a lovely California red and exquisite French champagne, I expect to have for some time!

So many people not mentioned in this blog have showed unending friendship and compassion over the course of these 18 months and especially in the last four weeks.  Please know I have you all in my heart with thanksgiving.  I miss and love my boys, Nikko and Sam Schaff, very much (and can't wait to see you soon!).  And in time, I promise everyone that poem.