Lying in Limbo, sort of


There are a number of limbos that we cancer survivors endure – waiting for test results especially biopsy results, wondering when remission will end, worrying if the treatment will take hold.  By that measure the limbo I currently find myself in is not so much a big deal.  You can always count on cancer to put things into perspective.

Where I am is waiting for Unum, my disability insurance company, to decide on extending or terminating my claim.  They have heard from all the doctors, six in number.  But how the dermatologist or otolaryngologist or urologist can shed light on the state of my disability, I have yet to fathom.  Unum have looked at all my recent $50 – $200 pay stubs and the income tax returns for the past two years.  I am just waiting to hear their decision.  Whatever that decision, my Social Security portion will probably follow suit.

An argument can be made in either direction.  Maybe it is time.  I don’t have a classic disability.  And I haven’t been admitted to the hospital since May.  And I do work those 5-10 hours a week at the wine shop.  But … I have lost vision completely in one eye.  I have no sense of smell.  These both permanent.  My muscles are still somewhat atrophied from years on steroids.  The skin on my hands and arms is still paper thin, prone to bruising and bleeding.  I bump into things and have depth perception problems.  And I catch about every bug that goes around.  My immune system is only partially developed, being only six years old.  Fatigue is still an issue.  Refer to the study posted here in November 21, revealing that clinical symptoms persist in survivors, even in remission.

The standard in my disability contract with Unun is that I must be capable of earning about 70% of what I would be if I had not been disabled.  Most of the time this has to do with performing in the profession you have trained in.  In my case, nursing.

So I have started looking into returning to nursing.  Sometimes I get excited about the prospect.  Other times I am a bit scared by it.  Could I manage the energy and stamina to work full time?  And I will have to be careful in selecting a venue.  A bedside hospital environment with its abundant drug-resistant super-germs would be too dangerous for me.  Reading is fatiguing with only the one eye. Who will care for my young granddaughters while their parents work and go to school?  And my mother is needing more attention as her mild cognitive deficits are more rapidly in decline.

I have begun working on my resume – which, at least it seems to me, is impressive.  Twenty years in cancer care – clinical work, nurse management, health education, pharmaceutical consulting, public speaking and teaching in dozens of countries on four continents.  Feel free to read it yourself on my LinkedIn page.

I am trying to plan ahead.  I have the impression that once the decision is made, if it is not in my favor, the monthly checks will cease abruptly – no transition period.  So I have even sent applications in for a couple of interesting jobs in clinical research and multidisciplinary care coordination.  Haven’t heard from either yet.  I hope that age is not a factor.  Shouldn’t be, legally speaking.  Nor should my cancer history and transplant status.  But it is all there, if not in the resume that must include the dates of my degrees (1969 for one – ouch!), then in my cover letter that needs to explain my lack of employment (with minor self-employment) these last six years.  I did include this website, Being Cancer Network, as evidence of my continuing commitment to the cause of cancer, however humble the effort.  (your chance here to offer uplifting comments…)

So here I sit, waiting.  Lying in limbo which, uncomfortable as it is, might be something I look back upon fondly.  I could face a greater dilemma.  Which would be worse – getting denied disability then not being able to find a suitable job? …or… having my disability status affirmed then being offered the perfect job, the crowning achievement of a long, worthy career?

But let’s put this all in a cancer-generated perspective – I should have been dead years ago.

Take care, Dennis


About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.


Lying in Limbo, sort of — 1 Comment

  1. I know how you feel Dennis. My cancer doctor is planning on taking me off disability next month. I’m trying to figure out what to do. I also have a bone marrow biopsy next week. I always get jittery waiting for the results. Pray to God about your situation, He will determine what’s best for you. Hopefully, this gives you some comfort. Jason

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