Beauty From Ashes

Week one of radiation is in the books.

We were hoping to see quite a bit of improvement already, however, the bleeding episodes continue and the tumor pushes through the skin a bit more each day. Right now, we liken the tumor to a giant alien eyeball coming through my upper abdomen.

During the week, I experienced a couple of bleeding episodes that threatened to postpone my radiation schedule. Thankfully, we were able to proceed without interruption.

We had a meeting with my Palliative Care Doctor this week. This calm, soft-spoken, thoughtful lady has been one of our greatest medicinal blessings. Actually, she's been one of our greatest emotional and spiritual blessings as well. She carefully considers every aspect of what we are going through, and guides us through treatment plans accordingly. She understands our spiritual walk, and blesses us with meditative prayers as well as sound medical advice.

When chemo stopped working and I chose to begin palliative care, there were several processes I wasn't yet ready to delve into. I needed time and she was patient to give me all the space I needed. This week, it was time to make more hard choices.

The first was whether or not I wanted extreme measures, such as CPR, defibrillation, or intubation used as life-saving treatments. When you first think about this, your initial, self-preservative, instinct is to say, "heck yeah! Hook me up, shock my heart into submission, breathe for me...do whatever you've got to do. I'm not ready to give up!"
Then, the voice of reason - in the form of a tiny palliative care doctor, who is able to logically walk you through all of those scenarios - takes over. Given the location of my ulcerating tumor and the many tumors that line my abdominal wall, and are moving toward my chest, CPR and defibrillation would do more damage than good. It's most likely I wouldn't survive those measures and it would be a very traumatic event all around.
Intubation was an easier decision. Having a machine breathe for me is not living; also, I do not want my family to be forced to make a decision of whether or not to remove me from machines.

So, I now have a bright orange DNR/DNI (Do Not Resucitate/Do Not Intubate) card in my wallet and a bright orange paper on my fridge.

The next hard choice was hospice care. Jay and I have had many long conversations about this. We both agree that hospice care is invaluable - the big question has always been - WHEN?
We spoke with my Doctor about this. She suggested the earlier, the better. She explained that these are the people who will be in our home caring for us and will be here in the middle of the night if needed, therefore, it is best to begin to form those relationships and establish those bonds as early as possible. She stated that most people wait much too long and wish they would have made the choice to enter hospice care earlier. I suppose this is why hospice care carries with it a denotation that the patient is knocking on heavens door when they make that call.
I've heard some people say they thought you had X number of days on hospice and if you didn't die within that time frame, they kicked you out. Truth is, many people stay on hospice care for a very long time.

We made the choice to transition to hospice care once I am finished with radiation treatments. We will meet with our sweet doctor on August 16 to begin that change over. She will remain my primary doctor until such a time as I can no longer go to her office. At that point, the hospice doctor will take over that care roll.

After aggressively being in this fight for 20+ years, this new change is hard to wrap our heads around. No more scans, no more CA125 tests to monitor where the cancer is or how it's behaving. No more researching treatments and methods of fighting. Now, all the focus will be on comfort, living well and dying well.

This new place has been very difficult for my family, as you can imagine, especially for my parents. This is not the natural order of things and shouldn't be the way life plays out. They've been in fighting spirit mode right along with us all these years and it's hard to let that go. We've all had hard discussions and most often the right words simply aren't there. Thankfully, the love is and that is what carries us through.

Please lift up my family in your prayers. Please pray for peace that passes understanding. I don't ask for understanding - no one can actually understand this. This is why we need the peace of God that transcends comprehension and emotions. It assures us that although this life can be painfully hard and we don't understand-there is a place where we will all be re-united forever. In that place, we will understand the big picture of God's ultimate plan.

Right now, we trust. We cling to the hem of Jesus' robe and we trust that through the hard - there will be grace. We trust that through the pain, there will be peace. We trust that through the ashes, there will be beauty.

Blessings,
Mandy