A Shift in Perspective

Saturday - September 19, 2015

So, this 3-year chronology of my lymphoma treatment and remission is morphing into a CVID blog....  Hmmm....  Who knew?  I suppose I need to change my "About Me" section and post another link on the CVID message boards.  I confess that as I lay up for the weekend trying to stave off my first respiratory infection of this school year, I am buffeted by mixed feelings.

Relief:  Hope exists for healthier living.  My VCU immunologist phoned on Thursday with news that my vaccine challenge test dovetails with my second round of blood tests (showing miniscule and alarming levels of immunoglobulin).  My blood has had a low response to both the tetanus and pneumonia (yikes!!) vaccines he administered on August 24.  These slam dunk results mean that insurance should cover the expensive immunoglobulin infusions that I need (weekly?  monthly?  TBD) to restore my immune system to some level of function.  With these infusions, the goal is to "avoid bronchitis,  pneumonia, and most respiratory infections."  He added that I should have colds at the rate of a person with a normal immune system.   That sounds absolutely GRAND!  I am flooded with relief.  Won't it be magnificent to live most of the year without lung congestion!  These many years of constant coughing have worn me down emotionally.  Which leads me to ...

Worry:  I may have already damaged my lungs.  54 is relatively late for a CVID diagnosis.  My father, Joe, and my sisters have always maintained that I have a "weak immune system."  My father told me that for years and he passed away in 1995 so this issue has been long-standing.  I believe I was relatively healthy through college but certainly remember coughing like a fiend when I was working as a management consultant in the mid 80s.  Coming down with shingles at age 25 in 1986 is consistent with the decline in my immunoglobulin.  I have a consult with a pulmonologist when I return to see the immunologist at VCU on Oct. 19.  Before my lymphoma, I used to joke that my lungs would be the death of me.  After cancer, my thoughts about my ultimate demise obviously shifted to the insidious specter that permeated my lymphatic system  - a relatively unappreciated and unnoticed part of our bodies! Now my lungs have reasserted their need for medical attention.  With treatment, CVID is completely manageable.  I am hanging my hat on THAT!

Guilt-free:  My wracking coughs are indeed NOT a cause for concern to the public, no matter how horrid I sound.  Whatever virus or bacteria is afflicting me will probably not impact others because the vast majority of the world has the protection of those handy immunoglobulins which will efficiently summon up an immune response and protect against infection.  I get sick.  YOU don't.  The immunologist emphasized that I may sound wretched but I am generally harmless.  "Patients with common variable immunodeficiency are subject to recurrent infections, especially those caused by microbes that don't normally cause disease in normal persons."  Good to know.  Maybe I should wear a sandwich board to reassure everyone?  I know I sound horrible, gross, scary ....

Squeamish:  I am NOT looking forward to a regimen of subcutaneous infusions for the rest of my life.  I spent too much time on message boards last night and this morning.  TMI, folks!  Too many photos!  Maybe I can gratefully digest this detailed information later.  At this point, I can't read any more horror stories about side effects (migraines!  NOT wanting to return to that!) and administration problems (broken needles?  Oh Lord ...) so I am returning to my self-imposed internet-surfing ban.  Megan can be my surrogate :)

Supported:  A community of zebras is already giving me valuable advise on finding a CVID specialist in the DC area.  Thank you, internet!  Thank you, Facebook!  The 2 referrals I received from VCU have been outed as rude and rushed by multiple sources online.  Excellent physicians, for sure, but I have been spoiled by compassionate, professional, courteous, and engaged medical professionals in 4 hospitals since 2012.  As a consumer and client, I have a choice.  I choose professional, polite, and approachable medical practitioners.  A third referral is reaping praise from multiple references with plaudits for manner, demeanor, and engagement.  Guess who I will call first?

"People with CVID are called Zebras because doctors are taught in medical school, “If it looks like a horse and sounds like a horse then think horse–not zebra” (as in a rare disease). CVID patients are the exception! We are Zebras! Because CVID is very rare, some doctors overlook it and misdiagnose it as something else because the symptoms are identical to other diseases."

Clear Scans and a New Diagnosis (?)

Sunday - September 13, 2015

Almost three weeks after my PET scans and MRIs and many many days of playing telephone tag with my oncologist in Richmond, I finally looked at my online health portal - my scans are all clear.  Phew.  Of course, I realized - intellectually - that bad news would have been transmitted swiftly, follow ups would have been quickly vetted and put into place, and a personal call to deliver bad news would certainly have preceded posting bad results online but ... - emotionally - I was not so sure.  Logging onto my portal seemed risky.  A very bad idea.  Seeing bad news in print without the support of a physician would have been a blow so ... I avoided it until this morning when I let my head and my logic win the day.  All clear.  Okay.  Breathe out.  Move on.  Nice to get a confirmation that lack of outside symptoms matches lack of evidence of lurking lymphoma sneaking back into my bones, my orbits, my nodes.  Relief.....

That emotion of relief is countered somewhat by another piece of health news delivered that Monday morning in Richmond.  While I will share more news as this upcoming path becomes clearer, my oncologist's keen listening to my regular mantra of "I get horrible colds; I can't shake them for up to 6-8 weeks; it can end in bronchitis or pneumonia" resulted in him running an immunoglobulin panel in my blood work.  This test had never been run on me before and revealed that ... I really don't have any immunoglobulin.  Barely perceptible numbers.  We're talking single digits.  After getting those blood results, he called me at 7 pm and left a message to call his cell phone.  Ummmm.... while he sounded completely calm and upbeat, NO ONE wants to have an oncologist call at night and ask you to call back on his cell.  No cancer news; just news that I seem to have negligible traces of IgG, IgA, and IgM.  He already had scheduled a referral to an immunologist at VCU.

In following up with the VCU immunologist and confirming these blood results in another test, a diagnosis of Common Variable Immune Deficiency ( CVID ) appears likely.  Treatment?  Think diabetes management but rather than daily insulin infections, CVID can be managed with monthly or biweekly subcutaneous infusions.  The CVID explains a lot.  Not only does it shed light on my weak immune system, it is consistent with my shingles, my thyroid autoimmune mysteries, and even my lymphoma.  The BEST news that emerges from this fresh information is that CVID makes the lymphatic system very active and that my stage 4 designation might have been overstated.  CVID "lights up a PET like a Christmas tree", just like stage 4 lymphoma.  CVID can "overlay" with lymphoma.

So, now that stage 4 designation feels less likely.  I remember the difficulty in harvesting a lymph node.  I recall the clear bone marrow biopsy despite the stage 4 designation.  And then ... I cringe when thinking how CLOSE I was to an allo Bone Marrow Transplant with its 25% mortality rate. Oh my.

Medicine = art and science.  We are still in a nascent era of medical discovery and treatment.

Time to find care up here in the DC area.  It looks like I will be searching for a CVID specialist.

Closing Down California Living

The hounds sacked out while I cleaned around them

Tuesday - June 30, 2015

Well, that's it for our beautiful perch on the hill.  This afternoon I walked the hounds on the fire road above Sausalito, soaked in the glorious view of Angel Island and Richardson Bay one last time, spied the UC Berkeley Carillon across the bay, and locked the doors behind me.  Time to move on - and I am pretty much exhausted!  It has truly been weeks of preparation and organization for this move - our 22nd! - with much weeding out and recycling before the packers came last week.  In California, MUCH can be recycled or deposited for safe disposal and I took full advantage.  The move itself was a challenge due to our location high above town on a steep and narrow road.  One truck got stuck getting out of our parking pad and then had a flat tire from the exertion and contortions.  The next day, our boxes and furniture had to be shuttled down the hill and across to Mill Valley where they were then transferred to the transcontinental truck.

Since the apartment emptied out on Friday, we have been in temporary housing in 2 lovely Air B&Bs for five nights.  Enjoying new lovely Marin locales.  Trying to rest.  We also took advantage of our last few days by enjoying wonderful outings to Sonoma, Point Reyes, and Half Moon Bay as well as final visits to favorite restaurants.  Leaving behind the amazing vistas, weather, and food of Marin is going to be pretty, p-r-e-t-t-y hard.  Will I find another destination to match the peace and beauty to match Point Reyes?  Will pizza ever taste so good?  Yes, we are excited to return to Northern Virginia but we will miss much about the beautiful Bay Area!

Monday it was down to dirty details.  Two full days of scrubbing and cleaning, mopping and dusting, and trying to leave our rental in white glove condition.  Let's just say that I am ready for a (coast to coast) vacation!

Leftover cancer drugs safely disposed of in CA! 

So farewell, California.  Thanks for two years of sunshine, Megan-time (!) and good health.  Thanks for that unequalled restorative, calming, ever-changing view from our perch on the hill.  Hurricane Gulch was very good to us.  I will fall asleep at night remembering the whitecaps and the wind, hearing the Golden Gate foghorn and the barking of sea lions, seeing the wave of fog spilling over Wolfpack Ridge and the outline of Angel Island against a moonlit sky.  A feast for the senses that will continue to soothe me in my memory.

Tomorrow we hit the road heading east!

Farewell to UCSF Oncology

Fabulous vista.  Who can spot the Golden Gate bridge?

Thursday - May 14, 2015

Today was my last quarterly check-up at UCSF.  These 2 years, I have felt well cared for and included in my care decisions at UCSF Hematology.  I believe I have had thoughtful care from a collaborative and reflective teaching hospital team.  The conversations feel like dialogues rather than pronouncements.  They also go the extra yard to treat all of my immuno-compromised self.  A perfect example is today when I presented with one of my epic going-on-6-weeks upper respiratory illnesses.  Although I had been to the UCSF clinic on Tuesday for this nasty, horrible cough / cold, the oncology clinic did a full work up on me - again! - and then referred me for a pertussis swab (despite an absence of whooping)  "just to rule anything out."  Today we also discussed transferring my care BACK to VCU and my original oncology team.  Carolyn had suggested I travel south to Richmond every few months rather than finding a new team in the DC area.  My UCSF oncologist agreed that this plan made a lot of sense and then presented his view on future decision points e.g., scans and bone marrow transplants.  We also agreed that if things head south, I skedaddle up to Johns Hopkins.  Sounds like a plan.  Now it's time to start transferring all of my records - another indication that our move is in full swing.

Wonderful News but ... Still Too Raw to "Time Hop"

Friday - April 24, 2015

Today is a glorious day for our sweet Megan!  Her plans for year 6 of her 7 year PhD strategy have come to fruition with a Fulbright Award to study at Nanjing University.  She is relieved and happy, happy, HAPPY! And of course Joe, Jonathan, and I are proud (but not too surprised!) family cheerleaders!  After all, one could say that Megan is an inspired, creative Dragon baby with the nose-to-the-grindstone tendencies of her Ox parents.  She is ready to tackle those Nanjing archives, learn the erhu in her spare time, and write, write, write!

And in the midst of this swirl of positivity -- there it is .... in the not-so-far back of my mind, I think "thank God, I am here WITH HER when she got the news."  Not just "here" in the sense that we happened to be together in the San Domenico faculty workroom when she opened the email, but "here" as in "still alive" to see our girl glow with happiness at a long wished-for goal attained.

Wow.  That sense of "almost" never quite goes away and this highly recommended "On This Day" Facebook app confirms recent history.  Three years ago today might have been my absolutely most excruciating point of pain.  I literally crawled up the stairs into bed ... and got up the next morning to the salvation that was my first grade classroom.  Unbelievable.

"Christine Ammirati

April 24, 2012 at 7:02pm · Williamsburg, VA ·

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.

17 Comments

So... time to disable this well-intentioned app, cuddle up with our amazing girl and the dogs, message Jonathan with laments about the Mets, feel grateful, and be in the moment.  It's still too soon to have surprise looks back and that day in particular still seres.

Virginia Dreamin'

Tuesday - March 31, 2015

This classroom view will be missed!

We are once again in countdown mode to yet another move.  The reality of our return to the familiar faces and environs in the Arlington area softens any discomfort or frazzle.  We are headed home!  Our lease is up at the end of June and on that day or soon thereafter Joe, the hounds, and I will turn the VW eastward and head off to the muggy and comfortable neighborhoods of northern Virginia.  Given that our days are ticking off steadily, we are now tackling the tasks of selling our Williamsburg house, buying a house in Mclean or North Arlington, prepping for our physical pack-up and move, and finding a happy new school for me to call home in Northern Virginia.

Another necessary task is finding an oncologist.  UCSF has been an amazing experience.  I feel regret at leaving my medical team behind.  So what's next?  I am toying with the idea of going in full steam at Johns Hopkins since it will be my medical recourse if I relapse.  However, Joe advocates for optimism and avoiding the round trip to Baltimore.  Another box to tick off as we organize our departure.  Do I choose convenience or top of the line Hopkins experience?

Shingles Vaccine: Take 2

Wednesday - February 25, 2015

This summer's shingles vaccine attempt was not successful when I surprisingly came down with shingles (ironic) during the time interval meant to clear my system of the anti-shingles meds I have been on since the start of my chemo in May 2012.  Acyclovir prevents shingles outbreaks and therefore would not allow the live zoster vaccine to take hold.  Obviously that three week time interval was too long.  However, Acyclovir may be impacting my liver and my team wants me OFF it.  Thus the need for the vaccine. 

Take 2:  After MUCH consultation, my oncology / hepatology / infectious disease medical team has come up with the plan of taking me off shingles-fighting Acyclovir for 1 day, administering the live vaccine on day 2, staying off Acyclovir for an additional 2 weeks to allow the live vaccine some time to take effect, and then to resume Acyclovir for 3 months.  After 3 months, I will go off Acyclovir BUT carry mega doses on my person at all times in case I feel any symptoms of a shingles outbreak.  In July / August, my first symptom was back pain shooting down my leg.  I simply thought I had pulled my lower back lifting or carrying.  My doctors seem rather confident that I will be able to identify a recurrence before the zoster actually blisters up.

The overall idea is to equip me with as much protection as possible for ... life in general and ... in case I relapse.

So today was the day.  Shingles vaccine has been administered and ... we'll see....  No Acyclovir for 2 weeks and looking out for vaccine reactions over the next few days.

Check-In and Next Steps

Thursday - January 15, 2015

A full day at UCSF has confirmed my apparent continued good health and NED status.  When I asked about another round of scans to get a glimpse inside the mystery that is our body, my oncologist affirmed that he sees no reason to undergo another round of PET and MRI scans.  The high radiation is a risk in itself and 2 years 4 months after the end of my last Hyper CVAD round, I remain asymptomatic - no drenching night sweats, no debilitating fatigue, no bone pain, NO vision issues, and NO HEADACHES; I remain highly sensitive to my months of horrific migraine-esque torture.  Believe me, if I were ever to get even the slightest twinge along my trigeminal nerve, I would be immediately attentive and have PTSD flashes.  So watchful waiting continues.

Today also welcomed another member to my team:  Infectious Diseases.  I have warm feelings about this specialty since it was VCU Infectious Diseases that actually first raised lymphoma and ordered tests that ultimately led me to diagnosis, pain relief, and successful (to date) treatment.  Our current task is focused on shingles.  We are trying to weigh continued daily Acyclovir to suppress shingles versus the drug's possible role in elevating my liver enzymes.  Do I discontinue Acyclovir and risk the shingles vaccine and its rare but severe side effects?  The vaccine would boost my arsenal of ammo in case of a lymphoma relapse.  However I could stay on Acyclovir for life on orders of my oncologist and infectious disease specialist and against the recommendation of the liver specialists.  Furthermore, can I stop Acyclovir in order to clear my system before receiving the live virus shingles vaccine?  Last time we tried that, I broke out in shingles within a few weeks. Three UCSF departments need to weigh in and make a further recommendation.  Despite long conversations with me, nothing was resolved today.  This debate is up in the air and not set in stone.  As for now, I am not jaundiced, popping Acyclovir, and happily shingles- free.