Be Brave and Courageous

On Monday, I will begin radiation treatments. The goal is to scar the vascular system of the tumor that is coming through the skin to stop the bleeding episodes.
They will also radiate the tumor that is beginning to invade the liver. The tumor can be felt under the skin, and we want to avoid it coming through the skin as well.

Many people have asked if surgery would be an option. We have consulted with four different surgeons in different states. The consensus has all been the same. I'm pretty much like Humpty Dumpty at this point. The tumors involve the majority of my abdominal wall and muscles. The surgeons could remove the tumors, however, they wouldn't be able to put me back together again. They also all agree that even if a successful surgery were possible, the tumors would simply come right back.

As radiation days near, I find myself growing nervous and anxious. Lying in a cold room by myself, on a steel bed, strapped down - unable to move for at least 30 minutes to one hour at a time while a large machine rotates around me gives me anxiety. Kara Tippetts called machines like this a "scary snort" from the book "Are You My Mother?" by PD Eastman. I like that - it's better than calling it what it is - a giant nuking machine.

During the process, you don't see any beams, feel anything or smell anything....although, when I did radiation in Chicago, one guy came out of the radiation room, into the patient waiting room, and swore he smelled bacon during his treatment :)

I just really really dislike laying in that room just me and scary snort.

As I've been preparing for the next two weeks of treatments, I've been focusing on Psalms. I'm very much in love with Psalms. The writers are raw, they're real, they tell it like it is. Psalm 27 has been speaking to my heart the past few days.

Verse 1: The Lord is my light and my salvation. So why should I be afraid? The Lord is my fortress protecting me from danger, so why should I tremble?
What do I truly have to fear? God is ever present; every surrounding me. He will never leave me alone. Not even in a room with a scary snort machine nuking my guts.

Verse 3: Though a mighty army surrounds me, my heart will not be afraid. Even if I am attacked, I will remain confident.
Cancer so often feels as though a might army surrounds us and attacks come from all sides. My confidence cannot and will not lie in medicines, doctors, or this world. All of these things can and do fail. My confidence must remain in the One who never fails - My God, the King of Heaven's Armies.

Verse 5: For He will conceal me there (His temple) when troubles come; He will hide me in His sanctuary. He will place me out of reach on a high rock.
His sanctuary will become my sanctuary. His peace and presence will surround me now and carry me to His Holy Temple to be with Him forever.

Verse 7: Hear me as I pray, O'Lord. Be merciful and answer me!
This has been my prayer from the beginning. Hear and answer me mercifully Lord!

Verse 13: Yet I am confident I will see the Lord's goodness while I am here in the land of the living.
My confidence is that I have and do see His goodness...EVERY...DAY. He gives me signs daily that He is with me, that He is a good, good Father, that He loves and cares what is happening to me.
He reminds me that all of you are praying faithfully, lifting us up before His throne. You all remind us with your love and encouragement.

Verse 14: Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.
We all have a scary snort in our lives. Be brave and courageous my friends.
Wait patiently for the Lord.
He hears...
He answers...
He cares...
He is merciful...
He is loving...
He is good.

Blessings,
Mandy

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

Grace Upon Grace

From His abundance we have all received one gracious blessing after another.  John 1:16

Right now, our lives revolve around doctors appointments, ER visits, and learning to live a much different life than we've ever known.

Last month, we moved into a smaller, one level home. Our previous home had two flights of stairs that had become increasingly difficult to navigate. My Dad came out from Texas to help us pack and move. It just so happens that our moving day coincided with the hottest day of the year. It was 96 degrees, which, for most people, is not so bad. We mountain folk, however, are very ill-equipped to handle any temperature above 80 degrees. After several days of packing, moving and unpacking as much as I physically could, my tired body gave out. For a couple of days, I simply thought rest would right the situation, until I awoke one morning feeling very disoriented and could not get out of bed. Thankfully, Jay had not yet left for work and I was able to send him a text to come into the bedroom. He attempted to give me a Gatorade, however, my hands were shaking so badly, I couldn't hold the cup. Jay has been doing this a very long time, and knew my symptoms equated to me being very dehydrated and having some heat exhaustion. He helped me out of bed, into the car, and to the ER. After a combination of IV meds and two liters of fluids, I felt well enough to go home.

For many months, the largest abdominal tumor has been pressing against the skin of my upper abdomen. At present, about 1 1/2 inches of the tumor is pressing against the skin - it is now a large lump that is visible through clothing. It is growing in all directions: upward toward my diaphragm, lungs and heart; downward wrapping itself around my abdominal muscle; outward into my liver; and upward against my abdomen wall.The tumor lump is very purple due to the amount of veins and capillaries pushing against the skin. We have begun working with a wound care specialist in an attempt to delay the tumor from bursting through the skin.  Unfortunately, yesterday, the tumor decided to play hard ball. While showering, I noticed a small trickle of blood that quickly turned into quite a fountain. After yelling and whistling for Jay (we really need an intercom system), he ran into the bathroom. "I'm pretty sure we have a problem", I told him. Despite the horrified look on his face, he remained calm and took charge of the situation. He helped get padding wrapped around my abdomen, get me dressed and into the car. He navigated the holiday traffic and made it to the ER in really good time. After being in an ER room about 30-45 minutes, the bleeding finally stopped.  The ER doctor told us that all in all, it really wasn't that much blood. I beg to differ and I believe that he would amend his assessment if he could have seen the crime scene that was now my bathroom.
He and I discussed what can and cannot be done for this in the future. The tumor is inoperable, so that's out for the most part. A vascular surgeon MAY be able to cauterize some of the tissues, veins, etc. if necessary. Blood transfusions may be needed and wound care will be main priority. So we will meet again with my palliative care doctor and my wound care specialist next week.

It has been a huge adjustment learning to live with many new limitations. Life has changed so much in such a short amount of time. Where I was once able to work, shop, or play all day, now my days are filled with more rest than activity. It takes a step and handle for me to get in and out of bed. I have to have help often to get out of a chair or move to a standing or sitting position because I can no longer depend on my abdominal muscles.

I very rarely drive, mainly because I'm on a good dose of morphine and although I feel fine, I don't want to risk it.

A year ago, I would spend an entire day cooking and baking. Today, fixing a bagel and a cup of coffee require a 15 minute rest on the couch.

Despite all these limitations, there are blessings.
God has blessed me with kind, funny and caring doctors and nurses. We are in the ER so frequently that we are beginning to learn alot of the doctors and nurses names.
My palliative care doctor has been working very hard to manage the daily pain that can often lead to exhaustion. She is very thoughtful and purposeful in her actions and I appreciate how much time she takes trying to fit all the puzzle pieces together.

In learning limitations, I'm also learning to rest and be still - things I have never been good at. God is good to reveal Himself to me during these times and bring peace at times when I struggle with limitations.

In doctors offices and ER visits, there is grace. In learning to be still and know that He is God, there is grace. In planning things, I never dreamed I'd have to plan and prepare for, there is grace.
Grace upon Grace.

Blessings,
Mandy