This will be a speedy post to ask for prayers and love and to hear the news that things are going well. We just found out that I will be meeting with Dr.Agah tomorrow and that he will actually be performing the procedures we've been waiting for.
To give a general impression of what's been going on: I have been getting a lot of answers from my doctors to the myriad of questions I have (I think Shawn and I have all of these questions). First, what have the doctors been doing while I wait for the procedures I have scheduled? Mostly, a lot of infusions (ie: daily IV's through my port). These infusions are filled with nutrients and compounds to fight the fact that my body was starving to death. These nutrients are vital to keeping me alive and I was not able to naturally get them because my body would not eat or would vomit or just avoid any appetite. These IV's have made it possible that I arrived in Arizona at 109lbs and now I am 120lbs (I am weighed every morning).
The hardest part is that there are numerous things my system needs to heal at this point. I still have the cancer that was there at my last scan, but now my body is getting strong enough to fight it again. This is why I am too tired to talk or reach out to people. I am sometimes gettig 6 hours of treatment a day and it's a little war going on inside my 120lb frame (yeah, that was more to write the weight out. Let's be honest).
Shawn and the people who come to take care of me have the single task to make me eat and to increase my appetite. And it all has to follow certain dietary rules which I will detail in a later post.
The first procedure I ever had at Envita was a specialized set of testing (blood) that can show what chemotherapy agents or supplements will help my body fight the cancers. This test has been specialized at Envita over 20 years. There is A LOT of debate over how well these specialized tests work and help. I can only say that Shawn and I have chosen to go with these tests to help me. We pray a lot. There is a lot of debate around whether or not this is a good form of decision-making. We've decided to go where our hearts lead (not our feelings, but the little tiny ship that leads our actions from a very deep place inside of us). Neither of us always appreciated following God (or even did it very well) but we truly believe that this is where He is leading us now, so we follow.
These tests have been leading my doctors to which procedures and IV's I am undertaking. Tomorrow, it will be "cooled radiofrequency (RF) ablation technology. It offers simultaneous, dual-probe radio frequency for treating painful bone tumors". The hope is that this in-patient procedure will allow Dr A to "destroy" the tumor in my hip and therefore, to remove the terrible pain it causes. We will not be certain until tomorrow, but there could be other tumors he might try to attack as well. Recovery time is generally easy and quick and there are not known to be painful side-effects - so no news tomorrow is good news!!
The procedure closest to my heart tomorrow is connected to what has brought me peace working with Evita. I'm not sure how many people know that I have had a drain in my right side since March/April. The drain was originally placed in case my GI tract was leaking bile into my abdomen - or vice versa. The drain was surgically placed so it would not be easy to remove. I have had this drain checked over the period of the last 8 months through scans and injections and everytime my Denver GI doc decided to leave it in. Lifestyle-wise, the drain does not allow me to shower or swim or go in a hot tub (no submerging). I was striving for a long while to trust in my doctor and that leaving the drain was the best decision for my health. Side-note that nothing has come out of the drain for at least 5 months at this point.
After my last PET scan, my GI doc said he'd decided to leave the drain. He didn't say how long and he didn't say why. It was, for me, a very hopeless feeling because I knew it meant he had decided to leave it "until I die." It might sound like I was just in a bad place, but conversations were definitely beginning to take that tone. It was as if there was too much cancer, so the drain was negligible.
When I arrived at Envita, the first place my lead nurse checked was the drain. She asked all about it, took samples and found a bacterial infection and was in shock that no one had been moniriting my drain in all the months that I had it (my oncologist simply never looked at it). My doctor here put me on antibiotics and it's being removed tomorrow. I am being treated like a patient again and they are trying to help make me better. It's small - but it was a very important thing for me.
I had prayed that I would swim with my family before I die. I am not focusing on the dying, but I am excited to swim at least once.
A long post - but a post asking for prayer tomorrow. I'll give an update before Friday and include a few BALD pictures as I finally jumped in and let my hair go.
I am rejoicing to have a woman here with me (my sis-in-law Doris) because we have been doing all the lotion/body butter/chit chat tihngs that were not Shawn's favorite. He has been home loving up our boys. I miss them, and they all seem so happy loving it up together.
Please forgive my editing, but I can't fix anything at this moment.
Jesus, I trust in You. I trust in the Hand of God that loves and moves for us.
Sometimes, the view from my treatment room at 5:30pm at night.
