Throwing A Fit

This grumpy tumor is determined to keep up guessing and on our toes.

This week, we have experienced an escalation of bleeding episodes. We met with my oncologist on Wednesday. We were able to show him a video of an episode that occurred the night before. Jay dared me to post it, but I'm not going to do that to yall....you're welcome!

This type of tumor is actually quite rare. A very small percentage of metastatic ovarian tumors will come through the skin and become ulcerated. We are having a very difficult time finding people who are familiar with this and are able to help and guide us in the right direction. We have been researching like crazy to figure out solutions for this. We've encountered some good information as well as distressing information. Once an ulcerated tumor forms, it will likely never heal - simply progress and life expectancy is typically 6-12 months. Now, none of my doctors have given me a specific timeline, and frankly I don't want them to give me one. We are well aware of the statistics and all,  I just prefer to not live my life according to them. My God is not a God of circumstance and it is His will in this, not ours.

My oncologist has referred me to a local radiologist to begin palliative treatments to hopefully scar the tissue and possibly the invaded veins that are causing the bleeding. He has also referred me to a wound care clinic in Phoenix that may have better luck in helping us deal with this. Our medical teams here in Flagstaff are wonderful, they simply have no idea what they're dealing with here. I guess we started this journey 20 years ago as a rare case, why not continue on that way?

The night we returned home from my oncology appointment, the tumor had another "hey look at me - I'm a fountain" episode.  Normally, these last 30 minutes to one hour. After an hour and a half, we decided a trip to the ER was warranted.
The very kind and thoughtful ER doctor suggested that they may need to inject the tumor with lidocaine and epinephrine to vasoconstrict  the vessels causing the bleeding. Wisely, he chose to consult with my oncologist and his surgical team prior to performing any procedures. My oncologist said that under no certain terms were they to "muck around" (that was the exact medical jargon used) with the tumor. The tumor tissue is extremely delicate and can easily crumble if stabbed at with needles. The hospital surgical team agreed with the assessment, so, we waited. They drew labs to ensure my blood counts were ok - and they were. After about two and a half hours, the bleeding finally stopped. They gave me plenty of fluids and re-bandaged the tumor. Around midnight they sent us home with strict instructions to return if the bleeding began again.

On our way to the ER, we drove through our downtown. In the summer months, it is THE place to be. People were walking through shops, pubs and enjoying dinner in restaurants on a beautiful summer evening.
As I watched, I felt an enormous stab of jealousy come over me. More than anything, I think, I long for normalcy. I know...I know...no one lives a truly "normal" life. Everyone has something in their lives that creates difficulty and no one has a perfect life - despite what their Instagram page shows.
I immediately began to struggle with a deep envy for the carefree laughter emanating from the streets and sidewalks.

I long to know what it is like to go through a day without pain or fear. I crave the lightness of a life of not fighting this physical, emotional and spiritual battle every moment of every day - just one day of freedom from thinking about death and dying.

I know that because sin came into this world, we are forced to live with those daily effects.  I know that this place isn't perfect and will never be.
I've been reading a lot of books on heaven lately. The marvels and wonders of what we will experience there.
I want to be able to run and soar without pain. I want to explore every inch of Jesus has created for us without feeling tired or weary. I want to have a heart healed of its brokenness and free to worship and praise my Holy God the way He intended. I want to walk hand-in-hand  with Jesus and pepper him with hundreds of questions like a child. There are so many people I want to meet and reunite with and so many things I want to learn.
All of this gives me great comfort, yet I am still clinging to this life and my loves. As Kara Tippetts said after her terminal diagnosis, "I feel like I'm a kid at a party, whose Dad's asking her to leave early, and I'm throwing a fit. I'm not afraid of dying; I'm just not ready to go."
That sums it up perfectly. I know deep in my soul, that heaven will be so much better - it will be more than I can think or imagine, but I'm still throwing my fit because I'm not ready to go.

In all of this, Jesus knows my heart, captures every tear in a bottle and records them in His book. He knows my anxious thoughts and understands each fear. He knows (and I know) that I need to hold loosely to this life and cling to the one that is eternal. He is so very patient and kind in allowing me to work through this. Through it all, He continues to remind me that He loves me with an everlasting love.

Blessings,
Mandy