Finally, An Answer



Granddaughter Caitlin Graduates



                Finally, An Answer

After months of testing, questioning, and frustration, I believe I have an
answer for what has caused my extreme weakness and fatigue.  The first symptoms appeared last September and were mild and occasional.  In December they became more pronounced, and by February I could walk only a short distance without needing to sit and rest.

At present I use a wheelchair to shop or attend medical appointments, and even walking around the house is exhausting.  My arms and legs feel heavy and achy. The crazy thing is once I sit and rest I recover completely, and feel pretty good.  Doctors have not identified any single cause, telling me I am "unique."  Well, that isn't helpful!

It was one of my North Star nurses who was so bugged by my symptoms that she researched and suggested it may be Paraneoplastic Syndrome.  In talking with my doctors here and my medical team at NIH, they now are in agreement that this is probably the cause.

There really isn't much info available, as the syndrome is pretty rare.  Basically the cancer tumors trick the body's immune system into fighting the body instead of the cancer.  There are many possible ways the syndrome presents, and some effects are more extreme than I experience.

The only "cure" is to treat the cancer; in my case of renal cell carcinoma, there is no cure, just the possibility of stabilizing tumor growth.  So I'm working on that.  I'm on an increased dose of Votrient, and in about five weeks I will undergo a PET/CT scan again to determine whether the medicine is working.

In the meantime, I go about my activities in an abbreviated way, as my energy is so low.  I'm working on eating well, although nausea and loss of appetite are a problem.  We did buy a used motorized wheel chair, but as yet haven't purchased a lift to take it with us.  It is great for visiting my neighbors, though, and a portable wheel chair is handy for short trips.

The most difficult part is wanting to do things for myself and being unable to.  It's really tough for this independent girl to become reliant on Frank and friends for so many things.  Frank has been so patient and hard working, doing all the cooking, grocery shopping, etc., as well as other tasks large and small.  And my friends have been amazing, doing all kinds of tasks that I can't do for myself, as well as giving me reasons to smile and laugh daily.

Life is very full!  Eric was here for a long weekend for Caitlin's graduation, and we all had a great time.  We are looking forward to a trip to Kona in August with all the family.  Looking ahead!