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Ellen’s Story

Hello to my family and friends. There is so much going on in my life that I want to share with you. Unfortunately, things are happening so fast that I cannot keep up with whom I've told what! I end up repeating myself to some and leaving others out of the loop altogether! This site should help ameliorate some of that. Thanks for visiting; your support is priceless.

It is difficult to say exactly when this saga began. Most of you know that about six years ago I simply began to feel run down and generally weak with very few specific symptoms. The simplest activities left me totally exhausted.

After literally years of numerous doctor visits with a multitude of different physicians, I developed a GI bleed and was subsequently diagnosed with Crohn’s disease. The assumption was that this malady was the crux of the problems I had experienced. Unfortunately, the treatment for the Crohn’s was ultimately more damaging than the disease itself and resulted in autoimmune hepatitis as well as excruciating arthralgia related to autoimmunity.  Add to this the already painful but well treated degenerative arthritis and type two diabetes and you get a woman who was fast becoming old before her time.

Nonetheless, I persevered and during the latter part of last year began to feel better than I have felt in years.  My Crohn’s disease and hepatitis appeared to be in complete remission (amazing the effects of Prednisone and Bud light), the bullous disorder that developed in September appeared to resolve on its own and my diabetes was well controlled.  The only issues that remained but did not have a negative impact on my steadily increasing, incredible energy level were a nagging pain in my right shoulder that radiated down my arm and over to my neck, and some other aches and pains in my hands and knees.  Physical examination of my shoulder indicated a likely rotator cuff issue and I had several weeks of physical therapy.  Alas, the pain in my shoulder persisted and, indeed, accelerated.  So we got an x-ray …

I suppose my CA Saga began with that x-ray. The orthopaedist (Deanna Constable, MD) saw nothing obvious to indicate rotator cuff issues but did notice what appeared to be a weak spot in the end of the humerus closest to my shoulder.  She ordered an MRI which showed an obvious lesion in the bone.

Dr. Constable contacted my primary care physician (William K. Robinson, MD) and the trek began.   Nine quarts of blood, a gallon of urine, a full body bone scan and an excruciating bone biopsy resulted in good news and bad: The good news was that the lesion in my arm appeared to be the only site in my body; the biopsy, however, revealed Metastatic carcinoma of unknown origin.  I was absolutely stunned!

Since receiving this news on May 29th I have been poked and prodded and turned in every way but inside-out. I completed radiation treatments to my shoulder the 28th of July and began working on August 3rd. A repeat PET/CT on September 18th revealed continued cellular activity in my humerus as well as new activity in the back side of my pelvis.  Another bone biopsy on the 25th showed the same as before: metastatic cancer of unknown origin.  Sigh ...

In spite of all the poking and prodding and multitude of tests and examinations, there is still no clue as to what or where the primary cancer is.  I am passed stunned now. I vacillate between total fear and anger and I struggle between resignation and a very strong urge to lash out.  And the metastatic cells go marching on.

I've always prided myself in being a little different, a one of a kind sort of gal who enjoyed being a maverick. Not anymore. Without my awesome husband, dear sisters and brothers and some wonderful friends (Cathy, Mike, you too Bill), I do not know where I'd be. All of you, your love, support and prayers mean so much to me.

Yet the saga goes on.

Latest Journal Update


This is a "special" message to my dear sister Marilyn and her wonderful son Ian.  I do not know what or how I could do without you and I want you to know how much I appreciate your willingness to put forth and change your plans, whatever they may be, to run me here or there or pick up prescriptions or whatever.  I know that I can never repay all that it must really "cost" you but I assure you that if I could I would certainly attempt to do so.  I just want you and the world to know how much you both mean to Henry and to me.  And I'm not saying anything about the wheelchair "runs" through WalMart.  Though I must say, there is nothing quite like the wind in your hair (such as it is) as you do WalMart!  :-)

I love you Ian!  I love you Marilyn!  And don't you ever forget it!!

To all of you, I totally appreciate your continued prayers, love and support through this journey of ours.  Even though I've not been as in touch as perhaps I should have been, times have been rocky.  Still I feel your presence and it means the world.  I do hope you're feeling the love in return.  I am not down and out yet and still feel much of the better fight still left.  Your hanging with me only helps solidify that stance.  I ask you to please continue prayers for Henry as well.  And I pray God's Blessing on us all ...

Love to all,