Wednesday - May 16, 2012
And so it begins ... but slowly .... with much administrative coordination to get the ball rolling ... towards health....
Joe brought me to VCU for an early morning
PET scan. After waiting immobile, in the dark, and silent (Joe was asked to leave the room to discourage any temptation to talk), the scan itself was as swift as a CT. The PET scan is used to determine the extent of my
diffuse large B cell Non-Hodgkin lymphoma. While I may have the most
common form of cancer and my cranial nerve involvement has clearly signaled that it is
Stage IV, my oncologists still need to know exactly where my lymphoma "hot spots" are located.
All in all, the PET was as easy as pie. But it was NOT foreshadowing for the rest of the day; this
particular appointment was the most time-efficient and productive of a
long procedural day.
The RN who checked us into radiology demonstrated the terrific VCU
customer service that makes our experience here so positive. She kindly
walked us up to the 2nd floor of the Critical Care Hospital and made
introductions to the front desk staff of the Adult Oncology Unit where I will have my 6 rounds of in-hospital chemo treatments under the
Hyper CVAD protocol. My new home away from home for summer 2012.
Rachel arrived as Joe left and I began settling into spacious room 144! My first visitor! Rachel helped me weather a number of abortive procedures. Project lets-get-this-damn-bladder-drain-OUT was an abject failure as the surgical PA and physicians had already completed rounds for the day. My port-a-cath implantation? No room for me on the Interventional Radiology schedule. AND - in the most educational episode of the day - I learned that just like in a PCP or Ob Gyn office I should NEVER leave my room without a magazine. When stretchered (I was prohibited from making the 2 minute walk) to get my
MUGA heart test, I was left in a transportation "hold" area for 65 minutes (!) with nothing but my thoughts to keep me company (not good when you are on day #1 of your cancer treatment). After the nurse practitioner came to fetch me, he set up my IV, explained the procedure, rolled me into the room, looked at the screen, and then asked, "Have you had any radiation today?" Bottom line: my PET scan radioactivity negated the option of a MUGA exam so he stretchered me back to the "hold" area to await transportation back to my room: "Find your zen. Focus on the positives." If only I had brought a
New Yorker. Ah well.
The Back Story
May 11: After meeting with him earlier in the day, Dr. Perkins phoned in the late afternoon with the
FINAL DIAGNOSIS = Diffuse Large B Cell Lymphoma. Carolyn was with me and helped me interpret the news and ask questions. We phoned Joe immediately with the update.
Facebook update: "Well, the most excellent news is that I have a
solid support system, a highly positive outlook, and finally (!) a
diagnosis and treatment plan to recover my vision and alleviate my
crushing head pain. On Monday, I begin six rounds of treatment for
lymphoma at VCU with the thought that I will transfer treatment to UCSF
when we move to San Francisco in July. All being well, I should finish
treatment in September. Thanks everyone for your support and well
wishes! I am feeling just fine :)"
May 10: Trip to VCU for a cystoscopy to determine my bladder repair (yes!), impromptu removal of my Foley (we bulldozed our way into urology and moved up the May 11 schedule), and a meeting with my surgeon who decided that my abdominal drain needed to remain in place for a few more days. The surgeon noted that the lymph node he harvested was very small and unlike other lymphoma tumors he had seen, ventured that he did not think I had lymphoma, and wrote a "return to work" permission slip for me to go back to the classroom on Monday May 14!
May 9: Facebook update: "Jonathan
is home! And he brought oh-so-fresh and truly delicious cupcakes! Red
velvet and chocolate! My boy is a thoughtful, sweet soul :)"
May 8: Facebook update: "Change of schedule: The meeting with the
oncologist has been pushed back until Friday because the pathology
report has not yet been completed. Friday seems a long way off!"
May 5: Joe departs for a week of business travel in the early afternoon. Carolyn arrives to keep me company and help me out in the late afternoon!
May 3: Discharged from VCU with a Foley and an abdominal drain resulting from my nicked bladder during the lymph node harvesting.
Facebook update: "Lymphoma may indeed be the culprit lurking
behind my vision issues and head pain but it is proving to be an elusive
diagnosis. Yesterday's supposedly simple laparoscopic surgery to
remove and biopsy one of a handful of suspicious lymph nodes in my lower
abdomen became a longer and more invasive search. One slightly
enlarged lymph node was finally found, removed, and deemed to be an
excellent tissue sample. However, the
extensive probing has left me battered, bruised, and with larger
incisions. More significantly, they nicked my bladder. A nicked
bladder = a full afternoon in surgery, a catheter for at least a week,
and an abdominal drain for at least 2 weeks. All in all however, it's
GOOD news! I'm HOME, hard-to-find lymph nodes MUST be a good thing, and
my new pain meds are knocking out my head pain as well as my brutally
injured abdomen! A diagnosis next week - perhaps!"
May 2: 6:30 a.m. lymph node harvesting surgery at VCU. We had hoped / believed that this procedure would be laproscopic and outpatient but when I awoke in the recovery room, Joe was there to tell me that my bladder had been nicked. They had difficulty locating any enlarged lymph nodes (good news, I think) and in the process of searching had nicked the bladder. I am in the hospital at least for one night.
While waiting to go in for surgery, Dr. Perkins phoned to say that there were trace lymphocytes in my spinal fluid and that it was likely that these were cancer cells in my central nervous system.
May 1: Pre-op visits to VCU for tests and paperwork.
April 28:
Facebook update: "4 months ago today was another gorgeous morning on Grand Cayman. We left the quiet less-developed east end of the island and enjoyed swimming / walking on beautiful 7 Mile beach. As we looked for our destination restaurant among the bustle and congestion of the 7 Mile strip, I was stricken - in one moment that took my breath away - by this astounding headache. I rarely get a headache. Was it the sun? Was I dehydrated? Was I hungry? Nothing that simple, I'm afraid. 4 months later, we may be closing in on an answer. I can't believe it - 4 months. If I felt better, I would go get a cupcake - or pie! TJ's chocolate covered almonds are going to have to suffice as a commemoration of this latest milestone."
April 25: Facebook update: "So excited! So relieved! Carolyn will come to Williamsburg while Joe is on his upcoming week-long trip.
He is more at ease knowing I won't be negotiating life alone while he
is unavoidably away. Yes, I seem to be that incapacitated - at least at
home if not at school. Although I DID manage to make a quick stop at
the market this week for milk! Kuddos to me :) Thanks to my amazing
sister and her family for helping me out. She will be my eyes and ears
for that (very important) week of doctors' appointments and we will have
some long hugs."
April 24: Head and orbit MRI
Facebook update: "
Shattered. A head MRI with a bone-crushing
headache is immeasurably worse than a head MRI while on prednisone and a
manageable headache. Taking emergency pain med, curling into a ball,
and hoping for deep, healing sleep."
April 23: Spinal tap
Facebook update: "Today's spinal tap was quick and completely
pain free. Happy to have another test finished and looking forward to a
clear path forward."
April 20: First meeting with Dr. Perkins, VCU oncologist.
Facebook update: "Another welcome consult and discussion at VCU
today with another impressively personable and thorough physician.
Although next week will bring 3 trips to Richmond, I think we are still
looking at least 2 to 4 weeks out for any treatment or pain relief.
Slowly but surely narrowing the field...."
April 18: Dr. Edmond phones with news that chest and abdominal CT scans show enlarged lymph nodes that indicate lymphoma. Arranges meeting with oncologist.
April 17: Facebook update: "CT scans last night and a full day of tests on Friday. I feel very well cared for. "Inquiring minds want to know."
April 16: Chest and abdominal CT scans
April 14: Facebook update: "So, after yesterday's pain management
consultation, an hour ago I added hydrocodone to my ever-evolving
pharmaceutical cocktail. Good news: the stabbing pain has lessened.
Not so good news: I am very loopy and have a full weekend of lesson
planning and report cards ahead of me. Maybe just for bedtime...."
April 14: Consultation on pain with family physician
April 12: Dr. Edmond phones with news that my LDH level is heightened indicating inflammation. He has consulted with the neuro-ophthalmologist who believes that
diagnosis #4 = Tolosa Hunt Syndrome
Facebook update: "What are the odds? 1 in a million. Tolosa-Hunt
Syndrome is now on the radar of my VCU physicians. Reading the online
info, THS fits my symptoms exactly - most interestingly the precise
timing of the characteristic 2 week gap between the onset of my pain and
the beginning of my vision problems. Better yet? Intense steroid
treatment can resolve the pain (though perhaps not restore all of my
vision at this point). Next steps: full body CT, then another head and
orbital MRI, then a spinal tap. CT is scheduled for Monday evening. Dare
I say I am feeling somewhat optimistic? Cupcake tomorrow after school
FOR SURE!"
April 10: Dr. Edmond, head of VCU Internal Medicine, suggests that my bloodwork and symptoms might indicate that "lymphoma may be lurking" and schedules chest and abdominal CT scans.
Facebook update: "So sad to miss the first day back at school
with my first graders but Carolyn was able to wrangle me a very
thoughtful and thorough consult today with the head of Infectious
Diseases at VCU. Although my palpable lymph nodes are all clear, he has
ordered the last step in completing my ongoing series of scans - a full
body CT to rule out a less obvious inflammation site. More labs, more
thinking, and a newly scheduled appt. about pain mgmt. I'm not sure
we're moving forward but at least we are still moving."
April 9: Catheter angiogram outpatient procedure. The neurosurgeon says that the blood vessels in my head are clean as a whistle; it's NOT a Cranial Cavernous Fistula.
Facebook update: "Well on the bright side, another cause has
been ruled out. The neurosurgeon said my brain's blood vessels are as
"clean as a whistle." The images were truly astounding - beautiful....
AND, Joe surprised me with a delicious tres leches cupcake! (I sense a
trend)"
April 6: After harassing my Family Physician, get blood drawn. Carolyn then works to have the results sent to Dr. Edmond for my 4/12 appointment.
Facebook update: "Weird day: (Thumbs down) Neurosurgeon has
downplayed possibility of finding a troublesome fistula even before
Monday's procedure = no solution on that end. (Thumbs up) Carolyn
has gotten me into the head of VCU infectious diseases for a consult on
Tuesday and I have managed to extract a full panel blood order from my
GP for Monday so the VCU specialist can refer to it during our Tuesday
consult. QUESTION: Is there a real Dr. House? Can some MD get a cane
and a fistful of pills, scream at a bunch of lackeys, be snarky but
wise, play the piano, secretly be Bertie Wooster, and then finally
diagnose me?
Yum!! Carrot cupcake in homage to the vision and chocolate cupcake as a salve to my aching head!"
April 5: Facebook update: "Day #100 and I have very mixed feelings.
Scared at the lack of resolution and onward plan. Grateful that I have
support to help me keep my mind and my perspective. Appreciative that I
have my steely stubbornness to keep plowing on. 100 days is a
milestone that I will commemorate through some serious comfort eating. I
may even make a special trip to Extraordinary Cupcakes - 1 cupcake for
my head pain and 1 for my vision loss. Why not!"
April 3: CT angiogram. All clear. Catheter angiogram scheduled.
Facebook update: "VCU Medical is amazingly efficient! 4 hrs
after my CT angiogram, my neuro ophthalmologist called with the consult -
no blood vessel leakage detected. Next step is a catheter angiogram.
Trying to get it on the schedule during this spring break week. A
problem can't be fixed if it can't be found. Fingers crossed - again."
April 2: Facebook update: "Feeling a bit blue about Megan's departure but
so grateful for her week of TLC and company. Jonathan has perked me up
a bit with a thought that he might have a ride back to Wmsbrg for the
weekend :)
Again, my sister Carolyn
works wonders! She has moved up my CT angiogram from next week until
tomorrow! Is a carotid-cavernous fistula causing these months of hell?
Lets find out and then FIX it! Thank you, Carolyn!"
March 29: Megan returns to Davis
Facebook update: "Happiness is ... Megan home for a week,
Jonathan heading home for a quick 30 hr visit so we can have some 4-some
time, AND another diagnosis / path that might yield a solution rather
than indefinite waiting. Today's second round at Medical College of VA
found that I have "progressed" in a negative direction regarding eye
muscle rigidity and diplopia. In addition, my pupils are now different
indicating some issues with cranial nerve #3 (!) and venal pressure.
CTA scan and probable angiogram to come but a fix may be in the works :)
Better than just waiting it out...."
March 28: Joe comes to consultation with VCU neuro-ophthalmologist.
Diagnosis #3 = Cranial Cavernous Fistula
March 25:
Facebook update: "
So I have woken up from my weekend of deep and
constant sleep to find myself covered head to toe in hives..... Oh
yeah, it gets better and better...."
March 23: Facebook update: "After brief moments of happy reprieve on Wed.
and Thurs. I was feeling slightly (delusionally) optimistic. Then the
always-frightful Friday dawned with its week of cumulative exhaustion
and pain and I have suffered horribly since I opened my (one operable)
eye this morning. What a wretched day. When you're at your wit's end,
where do you go next? ... Off to bed with healing thoughts of excited
first graders awaiting the first eagle egg hatch in Decorah. Pure joy
truly has some medicinal value :) I'll take it on day #87!"
March 22: Megan arrives from Davis
March 16: Facebook update: "After another wretched night, week, etc, I am
ready to strike a grand bargain - I'll accept double vision / loss of
function in the left eye for no more constant migraine pain.... Just a
thought.... "
March 15: Facebook update: "2nd round of acupuncture today. Minimal headache and blissful sleep for 90 minutes. Yum!"
March 14: Facebook update: "Week #12 of my new normal is underway...."
March 1: Consultation with VCU neuro ophthalmologist.
Diagnosis #2 = Graves orbitopathy.
Facebook update: "On Day 65 of this migraine-or-is-it? problem, I
spent 2 hrs and 40 minutes at a teaching hospital with 3
neuro-ophthalmologists shining lights, tilting my head, and checking,
asking, listening, consulting, debating, trying something new, bringing
in someone else, reading, referring, tapping, and just giving me the
once over from every angle. It was a welcome and wonderful morning.
Upshot? Back to Graves, specifically
Graves Orbitopathy in BOTH eyes with only my left manifesting diplopia
and pain -- to date..... (ominous). Solution? Time, copious amounts of
ibuprofen, and my gonzo eyepatch (which they admired). And of course
acupuncture. It could be an indefinite time until this problem resolves
therefore I hereby accept this condition as my new normal and resolve
to stop the virtual whining online and via telephone and the quiet(?)
weeping in front of family. As Carolyn
often intones, we all have a choice: "shake it off or suck it up." I
shall suck it up. Thanks everyone for your amazing support. It's been a
long year and I am so grateful for all my friends and family!"
Feb. 28: Facebook update: "My sister Carolyn
gets things DONE! She is a resourceful and hardworking wonder who took
to the phones from Colorado this morning and by the end of my schoolday
had confirmed an appt. with a neurologist at VCU. Not in May mind you
but for THIS Thursday. And she had arranged every detail including
medical records transfer. Yup, that's my sister. I am one LUCKY girl!
So grateful and relieved!"
Feb. 27: Facebook update: "So... after the MRI and in consideration of my
severe and continual pain, the doctors have conferred and have a new
medical path. I am suffering (literally) from cranial nerve IV palsy AND
trigeminal neuralgia. Google it. It sucks. Next stop is a neurologist
or a neuro ophthalmologist, whoever has the first appointment. So far,
first available is May 1st. I am finally losing my optimism. Feeling
very very forlorn. But I'm sure I'll perk up once the pain killers kick
in :)"
Family email: "Joe came with me this morning to the endocrinologist for a consult and we met with her for 40 minutes. She had consulted with the ophthalmologist about the everything-is-well 1 hour and 50 minute (!) MRI. In considering the location and description of my severe and continual pain, the doctors have a new medical path. I am suffering (literally) from cranial nerve IV palsy AND trigeminal neuralgia. Google it. It sucks. Next stop is a neurologist or a neuro ophthalmologist, whoever has the first appointment. So far, first available is ... May 1st.
I am finally losing my optimism. Feeling very very forlorn. But I'm sure I'll perk up once the pain killers kick in :) Joseph is his amazing, incredible, steady and supportive self during these last 10 weeks of my limited function. I am also bolstered by Jonathan's visit last weekend and Megan's visit at March's end. I am one tough cuss, however and am trying to figure out how to find the glass-full angle. Any suggestions are welcome! Acupuncture is my next route even if I get an earlier consult."
Feb. 25: Facebook update: "So very grateful and happy to have Jonathan home for the weekend :)"
Feb. 23: Facebook update: "The MRI was normal. Phew. Next step is a
return visit (with Joe this time for some muscle and clear thinking) to
the endocrinologist on Monday morning. With the steroids now tapering
off the cranial nerve issues are becoming more pronounced once again.
Ugh. I seem to be in a very predictable cycle."
Feb. 22: Head and orbit MRI at Sentara. In signing my consent, I read that MS is suspected but has not been discussed with me. I call Carolyn from the bathroom to see if she can google a connection.
(NOTE: Prednisone masked the lymphoma inflammation in my left sphenoid sinus and therefore evidence of lymphoma is not seen in this MRI)
Facebook update: "1 hour and 50 minutes in the MRI for both
orbits and brain. One benefit of being exhausted? I slept through the
whole thing :)"
Feb. 17: Facebook update: "Doctors (endocrinologist and ophthalmologist) teleconferenced today and the MRI is
back on for Wed. afternoon to rule out a mass. They say odds are low
but I - of course - would prefer if odds were nil :) At least we're
moving forward rather than continuing to tread water. All this being
said, even with my highly critical self-concept, I am giving myself some
props for not only soldiering on but enjoying some major highs in the
classroom these last 2 months. This week was another lovely adventure
of discovery with a tremendous group of children, peers, and families.
How lucky I am at work and at home!"
Feb. 14: Facebook update: "Restarting another 12 day series of
prednisone, scheduling doctors' visits, and rocking my eye patch after a
long (but very happy) day in first grade.... It's not quite the ideal
Valentines Day but I'll take it! Yay for steroids and for my intrepid
lobbying that actually succeeded in getting them dispensed :)"
Feb. 11: Facebook update: "Yup - another health update; it's not over
yet.... Since I began tapering off the steroids mid-week, the headaches
and the episodes of double vision have increased. I'm back to waking in
the morning with pain and multiple views of the alarm clock. Plan for
the weekend is to REST THE EYE with full use of the eyepatch and to
schedule another doctor's appt for midweek. The last day of the
prednisone is Tuesday .... Then what?"
Feb. 3: Facebook update: "Uh oh, I feel like since I got off the
steroid two days ago that I am slipping back to double vision and
terrible pain. Another rough night.... With three doctors working
together (?) on my treatment, getting a steroid refill should be a piece
of cake, right? Hmmm....."
Feb. 1: Consultation with Endocrinologist. Speculates on pain but is clear that it is not consistent with Graves orbitopathy but it could be
Trigeminal Neuralgia
Facebook update: "The endocrinologist believes that sinusitis
prompted a thyroid storm thus causing the trochlear nerve palsy. I am
back to single vision but am still experiencing great eye fatigue and -
for the last 2 days - an undercurrent of pain. Woke today to a second
morning of major headache so obviously I need to ratchet it back and try
to rest my eye. Hard to do in the visual world of first grade but I'll
give it a go!"
Jan. 29: Family email: "We have just returned from a glorious walk along the York River with the dogs - my favorite outing and one that I have been unable to make since we came back from our Cayman holiday and I was felled by a month of blinding headaches. With my new hand-sewn, pretty kick-ass, fully occluding eyeglass patch - and a hat - I was able to manage the sunlight and the movement, and simply enjoy a long dogwalk. A flock of ducks was feeding in the shallows, the herons were raucous, and the river was sparkling. I am so happy to be out and about!
Tomorrow, I will continue at work as usual. My function should certainly be better than it has been during the last month. I plan to alternate between my eyepatched glasses for close work (guided reading, computer work, lesson prep) and a pair of glasses that have been retrofitted with prisms to focus my eyes back together (general classroom supervision and interaction). I will actually integrate my new look into the day's curriculum focus (it's anti-bullying week) and I think the kids will take it in stride.
On the medical front, Joe, Carolyn (our intrepid researcher) and I are feeling rather confident that my trochlear nerve palsy is the result of a zenith of hyperthyroidism / thyroid storm.. Although I have been HYPOthyroid as recently as October, given my hashitoxicosis, my levels have been known to spike or crash within days so this possibility seems likely especially when we reflect back on other symptoms. I continue on steroids (to reduce inflammation) for the week, see my endocrinologist on Wed., revisit the ophthalmologist on Thursday, and get an MRI the following Tues. While there is of course the possibility of a brain tumor, this option is the least likely for palsy of the trochlear nerve. The prime cause is hyperthyroidism as well as a blow to the head, then diabetes, the aftereffects of a viral infection (my sinuses?), and THEN a brain tumor.
Cranial nerve #4 is a delicate nerve that traverses a long and unusual path. We are not freaking out ... okay, maybe we did a little bit on Thursday night but not after some googling. As I wrote: "Now that the month of blinding crunching pain has dissipated behind the balm of an eyepatch, I am simply so enormously relieved to be pain free that I am completely upbeat. I think Joe may believe I'm going a bit batty; he reminds me regularly that I will certainly get use back in my left eye but for now I am just focusing on the daily needs.... I am refusing to use my left eye / expose it to light without the protection of the eyeglasses. Perhaps with rest (and steroids) the eye will heal and the trochlear nerve paralysis will abate." Being a bit type A (!), I am surprised to see how easily I am letting my normal weekend of school frenzy and classroom preparation take a back seat to fussing with my eyepatch and avoiding eye strain. Lesson preparation with one eye is a tricky endeavor."
Jan. 27: Facebook update: "After getting home from my afternoon of
medical tests yesterday, I have used an eye patch on my left eye
continuously. The previous night I had alternated eyes for the patch
with mixed effect - in retrospect, my left eye was overworked. Last
night I had about 4 hours of continual rest and relief for my left eye
before bed. Anyway, with the steroids and the eye patch, I had a GREAT
night - FINALLY after 30 nights!!! AND NO HEADACHE AT ALL THIS MORNING!
Yeehaw!"
Jan. 26: Consultation with Ophthalmologist in Williamsburg. Diagnoses palsy of cranial nerve but what is causing this paralysis?
Graves orbitopathy?
Facebook update: "Thanks for all the messaging, everyone.
Progress. I spent the afternoon having a full ophthalmology work-up.
Turns out that I have a palsy of the 4th cranial (trochlear) nerve that
may or may not be caused by an underlying thyroid issue (hashitoxicosis)
that I have been managing for 9 years. Tomorrow I go for more blood
work and an MRI but am unsure about when the underlying cause will be
nailed. In the meantime, I am on steroids. At least it's news!"
Jan. 25: Facebook update: "Day 29 ... I find that I can only work / read
while wearing an eye patch. Pathetic and absurdly humorous and I do
take some solace thinking that my first grade pirate-lovers might enjoy
this sight. I'm back to the doctor's on Friday morning with Joe coming
along to lobby for more aggressive treatment."
Jan. 24: Facebook update: "Day 28 - can't believe it.... Vision and
balance remain WAY off. Pain is managed with meds every 4 hrs. Off to
see another doctor this morning."
Jan. 22: Facebook update: "Day 26. In my pjs at 5 pm having slept off
and on for about the last 17 hours and ... still no change in the pain
level and double vision. Soooo, I guess that resting rather than working
is not a clear solution to the problem. Lesson planning may have to
wait until tomorrow, however. I am feeling utterly spent."
Jan. 19: Facebook update #1: "Day 23 and my vision remains doubled while the pain is now dull. Exhausted and so eager to feel healthy! Maybe this weekend?
Facebook update #2: "Clarithromycin for 10 days concurrent with finishing my last 4 days of Doxycycline..... And here we go...."
Jan. 17: Facebook update: "Still having heavily distorted vision but
happy to say that pain meds have finally wrestled the headache under
control. It was a bit of a lost weekend - ah well"
Jan. 13: Facebook update: "Day 17 and somehow it's the worst day so far.
Doctor has prescribed 2nd / new round of antibiotics and is ready to
change the meds once more by Monday if I do not improve significantly.
Coupled with Jonathan's return to Blacksburg, it has been a rather bleak
(and painful) day...."
Jan. 12: Double vision begins.
Facebook update morning: "Day 16 and I finally feel that I have turned the corner! yay""
Facebook update afternoon: "Spoke too soon. Pain is present but diminished however now I have severe double vision. Booooooo sinus headache! Booooo!!!!!"
Jan. 11: Facebook update: "Booooo sinus infection and headache! Day 15
of disrupted sleep and pain and weird vision issues. Can we travel
north this weekend to see Joe's mom? My (reluctant) vote is "no"
Jan. 6: Consultation with Immediate Medical Care.
Diagnosis #1 = sinus infection.
Dec. 28: Severe headache strikes in mid-afternoon.
