So many times this week I've sat down and stared at this empty screen trying to find the words to tell the story and express how I feel. Still tonight it feels difficult, but I will try as I believe this is an important part of this journey. An old friend posted a few weeks ago that he liked how I refer to this as a journey, but not to forget who my tour guide is. I think about this now because I am not sure I like the trail I'm being led down. This week started on a straight trail with the end in sight, but made so many turns each day that I felt lost and unsure. As I begin to question the trail I look to one of my favorite verses, Isaiah 30:21...."Your own ears will hear Him. Right behind you a voice will say, This is the way you should go, whether to the right or to the left. " This verse is all about the people of Jerusalem and as they made a wrong turn our God would correct them. I believe He will do the same for us if we are willing to listen.
My family has had many decisions and obstacles to face this week. Tuesday, my little sister went to get an ultrasound and give blood because she has not been feeling well and needs to figure out what is going on. That same day my 16 year-old nephew was admitted to the hospital as he'd been fighting immense pain in his hip/leg, high fever and vomiting for over 5 days. They had been testing him for septic shock or a viral infection that settled in his hip. Wednesday they decided to make an incision, about 4 inches on his hip and flush out the infection. When the culture came back it was Staph. Yesterday we found out that the Staph is in his blood and today we are awaiting news to know if it has gone to his heart. Today my brother had some GI testing done in the hospital as he hasn't been feeling well for quite some time. He got news that there were no polyps, red spots or inflammation, but they've sent off some tests to the lab for things like crohn's disease, colitis, etc. We also got news that Billy's brother will have a stint put in on Monday and if this doesn't work they may have to do open heart surgery. In the middle of this I have had three big appointments, which I'll tell you about next. But for now, I have a hard time not asking why? Why would God put so much on our family at the same time? Why would he do all of this at the holidays? Why do we have to face so many obstacles and make hard decisions? As I felt heavy with my own appointments and everyone else's I prayed Isaiah 30:21 that God would lead us and that would be willing to listen for His voice.
I went to the OU Cancer Institute on Wednesday where my sister and I met with a Radiology Oncologist (Rad-Onc) that specializes in Brachytherapy. This appointment was to serve as a second opinion to the type of radiation treatment recommended, as well as inform me about Brachytherapy. After my consultation and exam with her she questioned if the PET scan was clear enough to tell there was really cancer in the body or if there was something else causing this. She asked that I come back and see her after I met with my next appointment, the Gynecology Oncologist (Gyn-Onc). My hope was that the Gyn-Onc would be able to clear up the confusion the Rad-Onc had now put in my mind. Unfortunately, this was not he case as my second consultation and exam posed the question on what type of cancer I actually have. The pathologist report showed highly positive for P-16, which indicates a cervical cancer. It was also positive for CEA, which can test high or low for many cancers including cancers of the rectum, lung, breast, liver, pancreas, stomach, and ovary, but not usually the cervix. There was also discussion around an episiotomy scar from when I had Isaiah. There are studies that show endometrial cancer can grow out of the scar tissue around an episiotomy, though infrequently. In the end, the Gyn-Onc said I was a puzzle (which I've heard a lot of lately), but also that I am an academic interest, not only because of the rare kind of cancer I have, but because they'd like to understand how it started.
While waiting for answers that day I began to feel frustrated and confused. I had gone to both of these doctors with the mindset that we knew what I had, we knew the recommended treatment and they were just going to agree or disagree with the treatment plan. I felt too tired to seek a 3rd opinion if my 1st and 2nd didn't agree. In my lowest moment of frustration this song came to my mind. "You've got the joy, joy, joy, joy down in your heart. Where? Down in your heart! Where?" and I began to argue with God telling him that I most certainly did not have joy in my heart. To understand what this meant to me you need to know that my other family-focused blog is themed around JOY! As an adult it has been my mission to seek the pure joy that only our Savior can give. The first Sunday after I learned I had cancer someone spoke at church and said they now understood the verse in James 1 that tells us to consider all trials pure joy and I've been pondering the verse ever since. God spoke to me with this child-like song, and though I didn't feel the joy, the message was clear...I was not alone in this journey. My tour guide was still with me and if I would be willing to listen He would show me the path to take.
These doctors presented my case to the OU tumor board Thursday afternoon and called me to discuss the unanimous treatment plan today. There were 6 Gyn-Oncs, many Rad-Oncs, Pathologists, etc on this board. They determined that after all this discussion the treatment plan should remain the same as suggested by my hometown doctors. Prayers were answered that the path we should take would be clear. I have now had 16 Gyn-Oncs looks at my case from Minneapolis to Oklahoma and they all agree.
It is clear that there is cancer in the body because I do not have what it called Fistula, which is what the Rad-Onc at OU wanted to rule out. This is also clear because of the pathology reports showing the type of cancer and the positive margins around the partial tumor removed. A positive margin means that there was no healthy tissue on one side of the tumor, meaning there was cancer left in the body where they couldn't get to it surgically without damaging other organs.
Thursday, I met with the Medical Oncologist locally to discuss the chemo treatment. This will require a 3 hour treatment each week given through an IV.
I will have 6 weeks of External Beam Radiation 5 days per week.
I will have 6 weeks of Cisplatin Chemotherapy 1 day per week.
I will give blood once per week.
I will meet with the radiologist once per week.
I will meet with the chemo doctor once per week.
Once these 6 weeks are over I will go to the OU Cancer Institute and the Rad-Onc and Gyn-Onc there will oversee my Interstitial Brachytherapy treatment. In my mind, this will be the hardest part of this journey and will keep me in Oklahoma City for 4-5 days. 72 hours of this time I will be quarantined in a room receiving constant radiation treatment, which makes me radioactive and does not allow for any visitors. I will be bed-ridden and given a self-induced morphine drip. A nurse and doctor will check on me occasionally to ensure there is no infection and everything is working properly. I was told once that I would have to do this first, possibly next week, but today they confirmed that it will be during week 7 of treatment. I am finding some joy in the timing as it would have been a difficult way to start this journey.
Its been a hard week emotionally and physically and I greatly appreciate all the texts, e-mails, calls, cards and especially the prayers.
Two other verses that have spoken to me this week are:
Psalms 22:14,15,19 "My heart is like wax melting within me, my strength has dried up like sun baked clay. Oh Lord, do not stay far away! You ARE my strength, come quickly to my aide!"
John 16:33 was just given to me by a friend today. "These things I have spoken to you that in Me, you may have peace. In the world, you will have tribulation; but be of good cheer, I have OVERCOME the World!"