Deep Breaths

Deep breaths!!
The past few days have been a blur of paperwork, medical equipment, nurses and doctors.
Jay and I have glazed over eyes, dumbstruck expressions on our faces and true sensory overload.

On Tuesday, my sweet doctor made the call we didn't want to make - she called hospice. Within a few hours of returning home, hospice was calling us. We scheduled the admission for Thursday.

My case nurse and an administrator arrived at our home with sweet smiles and soft spirits. At the kitchen table - where all important discussions are required to take place - we talked about the ins and outs of all things hospice. My new team, which is comprised of my doctor, nurses, wound care nurse, CNA's, pastoral care, social workers and volunteers will now manage every aspect of my care from now on. They will work closely with Jay and I to ensure that we can focus on living well, spend time together and with family, and do the things we want to do.

We had many decisions to make in a short period of time:
* Where will the hospital bed go? We chose the master bedroom next to our bed. Even though the hospital bed will be physically easier for me, it will be very difficult not sleeping next to Jay every night. We pushed the beds as close together as possible so we can still hold hands and talk before drifting off to sleep each night.
* Oxygen Concentrator?  It's not an imminent need at this time, however, as a result of my tumor pushing toward my diaphragm and lungs, I can occasionally become short of breath. This will continue to worsen, and it is comforting knowing we have oxygen close by when needed.
* Walker? On a good day, I can be a bit of a clumsy ogre. Now that we live in a home with primarily tile floors, it is probably a wise idea - especially for the days when my energy and coordination are both low.

Today, my case nurse and my wound care nurse came to our home to assess the tumor. Since completing radiation, there have been no bleeding episodes - THANK YOU JESUS!
The wound, nevertheless, grows larger and erodes more and more of the tumor and surrounding tissue every day. The goal of wound care is to apply just the right combination of treatments and dressings to prevent future bleeding and infections. Both nurses said that my tumor looked clean and really good. I guess in the world of ulcerating/fungating tumors, that's kind of a big deal.
My wound care nurse showed us exactly how she wanted the wound treated and dressed. It's a fairly extensive process so Jay will play a major role in helping with this twice a day. The nurse asked him if he felt comfortable with this. He just smiled sweetly (ok, he smirked a little), and said he could handle it. After 20+ years of being a cancer care-giver, Jay can do this in his sleep.

When everyone left today and I saw all of this equipment strewn around, it hit me. This is really happening. It felt and still feels so surreal. My house looks like a hospital - ok - maybe not quite that bad, but pretty close. For the love of everything, there's a chair in my shower.

All of these things are stark reminders that I'm dying. I've been trying to process it all day today, but I'm still in a bit of a fog. I know that we will adjust to the new changes quickly - we always do. This is simply another stepping stone on our journey.

Even in the midst of glazed over eyes and what seems to be too much happening too fast, there will be mercy and grace. We will give our disorientation over to Jesus and allow Him to make sense of it for us. HIS sense, not the world's sense.
The world says none of this makes sense; cancer doesn't make sense; people dying young doesn't make sense.
JESUS says: All of this, I will work out together for GOOD; JESUS says, Come to me all who are weary and I will give you rest; JESUS says, this world is not your home - you're a pilgrim traveling through to your true home...HEAVEN!!

Blessings,
Mandy

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