This is Lori posting for the first time. To begin, I am so thankful for all the responses that come in through this caring page. I try to read all of them or Mark reads them to me. You all are the most amazing support group one could ever ask for or even imagine. THANK YOU.
I have been feeling more pain in my bones, particularly in my lower back, hips and down my legs to my knees.
I emailed Danielle, the nurse for Dr. S, and she suggested that I see a pain specialist at the pain clinic here at IU. So, we did that this morning. After asking me about my pain and the medicine I am currently taking (morphine ER), the Dr. (pain specialist) recommended that I be fitted with an implantable intrathecal pump (aka a pain pump or drug pump). The pump administers pain medicine directly to the spinal cord allowing smaller doses of medication to work more effectively, and since the medicine goes directly into the spinal cord, it isn’t traveling through the entire body causing unwanted side effects. Nonetheless, I’m hoping to be less tired and more alert with the pump. I may be able to get the pump surgically implanted this Thursday pending insurance approval. The pump is about the size of a hockey puck, and will be inserted in the subcutaneous tissue of the abdomen. I will also have an incision where they will insert a catheter into my spinal cord and connect it to the pump. The surgery is approximately 1.5 hours outpatient. This surgery, as with the port surgery, and all the tests and procedures I’ve gone through do not bother me like many of you may think. It’s not difficult nor is it painful for me. In fact, I’m excited about this surgery as I was with the port surgery. I know. I’m weird. 🙂
Over the weekend the results of the genomic sequencing came back from Paradigm Genomics in Michigan, and they were unable to find a good match to help fight the genes they sequenced. Therefore, Dr. Schneider recommends that I instead opt for the clinical trial being offered through the University of Colorado (IU is participating in Colorado-led trial). The trial drug is an aurora kinase inhibitor. Aurora kinases are often the enzymes which are, in Dr. S’ words, “excited” in breast cancer tumors. They aid in duplicating cancer cells, and this drug acts as an inhibitor to target these enzymes. The medicine is taken orally, so I won’t have to do infusions like with chemotherapy. There are several tests that must be done prior to starting the medication, which I plan to do this coming week. Wednesday, June 4th, I will get a brain MRI, and EKG and an echo cardiogram, and some basic blood tests done. Then, I will get a biopsy and begin the medicine on the same day, Monday, June 9th. Two weeks after I start taking the drug, I have to get another biopsy.
While Mark and I were a little disappointed that the genomic sequencing didn’t produce good findings, we still feel peace about the medical stuff. Dr. S. said that doing the sequencing at this stage is a bit early anyhow, and in the future we can try it again (remember, tumors “drift” over time). We have asked the Lord to make clear which path He wants for us. I think it’s reassuring to know we didn’t really have to make the decision; it was made for us by the process of elimination! And for that I am praising Jesus!
We are still discussing our options for getting a second opinion. I’d like to do that at either MD Anderson (Houston) or Dana Farber (Boston), but what would be best is if we could have second and third opinions from both places! Mark is going to make some calls and see what he can find out. In the meantime, you can pray that God would lead us to the right doctors who can evaluate Dr. S’ plan and give their opinions.
That’s all for now. We know God is in control of EVERYTHING, and we are happy leaning into Him no matter what happens to me. Cancer is NOT in control regardless of the outcome! Believing this allows us to enjoy our lives and live them to the fullest! We love you all and appreciate your prayers.