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.