Wednesday, December 24, 2014

Today I am grateful for technology

After a long weekend of telling so many who love me this news I haven't got another call in me.

In May 2013 I had an ovarian cyst removed. Only, on examination, the pathologist knew it wasn't just a cyst. He knew it was cancer, though not what sort, and it proved to be very difficult to diagnose. Turns out it was a rare bird called FATWO (female adenaxal tumour of Wolffian origin - less than 50 cases in the world wide literature). Several teams of doctors in three countries had been consulted to reach this conclusion. We waited on eggshells almost 5 months for this clarity.

When it finally came in late September 2013, I was told how lucky I was that it had been found as a discreet tumour attached to something I didn't need anyway, since removal was/is the only know treatment. We were clearly told there was no known chemo treatment and that it was known that these tumours do not respond to radiation. The recurrence rate was said to be about 10% (4 people up to that time). Follow up tests showed no sign of further tumours so I was released to get on with my life. Which I did with gusto.

In early November I found a small lump, maybe the size of grape, just below my ribs. Tests have revealed that it is one of five Fatwo tumours that have taken up residence in my abdomen and pelvis. One is already very large. Judging by the speed at which the one I can feel is growing, now the size of a cigar; these tumours are not, as my GP put it, behaving well.

Of course there will be doctor appointments and consultations to come. But based on the current tests and what is known about how this very rare cancer behaves this news is very poor. There may be a debulking surgery - mostly for my comfort I expect. Together with my dearest husband, John, and my fabulous sons, Callum & Ryan, and the teams of doctors who will soon populate our lives we will make informed and considered choices about my care.

I promise you all that I have not lost hope. But what I hope for may not jive with your hopes for me. At the moment I still feel like myself, albeit a bit bloated. I have had one serious bout of pain. A shadow foretelling a future that will become restricted by pain's boundaries at the very least.

My greatest desire is to be in company with those I love and enjoy that love while I still have the capacity. We will be in Vancouver December 26 - January 5 for sure. Possibly longer if the Cancer Clinic calls. We will be reachable by cell phones. John 250-352-5203. Helen 250-505-0789. Once we know more about timelines, surgeries and new developments I hope to make a trip East. (And to any creepers reading this our home will be occupied whenever we are not in it- just sayin')

Sadly, I will not be able to travel beyond Canada's borders for fear of medical bill repercussions if something went awry elsewhere but our guest room awaits any and all who trek to us. (God bless Tommy Douglas and his legacy of universal healthcare in this country!)

I do ask that you not inundate me with research and demands to fight. Instead I ask for your prayers and thoughts of light that will support me through this process what ever it may turn out to be.

Blessings as always as you know me

Helen

Ilana

אילנה

 

1 comment:

Hooked On Felt said...

My prayers and heart are with you. Blessings on the journey, no matter where it leads.