BAG-N-CANCER – Bravelets

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Posted on April 01 2016

Brave? Was I? I hope so for my daughter's benefit! If anything, my Brooke was definitely brave. However I wish I had known about Bravelets then. We both would have been wearing them constantly from the beginning.

Brooke had graduated from college in May but was having a difficult time finding that first "big girl" job. To be honest, her dad and I were getting a little frustrated with her. Just to make money while she continued to job search, she took a job in a restaurant. She had some experience as she had waitressed at a private beach club during her summer breaks. While working at the beach club, she had developed bursitis (or so we thought) in her shoulder. About every 6 months, she would head to the orthopedist for cortisone injections. After the 3rd one, the doctor that was doing the injections told her that before she could receive another injection, she really needed to see a shoulder specialist. We just happen to know one of the best shoulder specialist in the country and it wasn't long before she gave him a call as the last one did not do anything. Dr. Moorman saw her immediately, and jointly they decided to try physical therapy. On September 10th, her second PT appointment, the therapist did some deep tissue massage. Not a good thing given the situation that was about to unfold, but it probably saved her life. On the way home from treatment, Brooke looked over her shoulder for oncoming traffic and her neck "popped." She called me and let me know what had happened. About 15 minutes later, she called back and told me that it was really starting to hurt and her neck was starting to swell. I had her meet me at her nana & papa's house. She beat me there and as I drove up the driveway, she came outside. As soon as I saw her I told her to get in the car, we are heading to the ER. Literally, her neck was swollen a good 4 inches out and her chest about 3. She was covering her neck with her hand as we walked in. The front desk nurse asked what was wrong and she moved her hand. I told them what she had told me on the phone and they immediately took us back to triage and then to a room. A doctor came in immediately as did a nurse. The doctor thought she might have torn something in her neck or even dissected an artery. Either way she would be heading to surgery. She went straight for a chest x=ray (needed for surgery) and then to a stat neck CT scan. While they were prepping her for the scan, the doctor came back into her room and told me he added a chest CT as well as there was a mass on her chest X-ray.

Instead of surgery, we ended up on the oncology inpatient floor. Why? It appeared that Brooke actually had lymphoma. The doctor was going to send her home and have me call the cancer center the next day to set up an appointment. Thank goodness I asked if they would just assign us a doctor. When they responded yes, I told them that was unacceptable. I informed them that I had previously been the business manager for the adult inpatient oncology units and adult BMT unit. There was only 1 doctor that I would have treat my daughter. Luckily, it was the week he was serving the inpatients instead of being in the clinic, so we were admitted instead of being sent home. The next day, Brooke had her PET scan and was diagnosed with Lymphoma. The date, September 11, 2014. The next day, she had her surgical biopsy where they removed the largest lymph node in her neck. Final diagnosis, Hodgkin's Lymphoma. The following Monday, treatment started. Brooke went through 8 chemo treatments of ABVD. Her last treatment was December 29. The new year started out tough. Worse than any time during chemo. January through March, Brooke was in the hospital more than she was at home. Yes sir, I had to be brave, more brave than I had been at that point.

There was a bright light during that time. While in the hospital, they were able to go ahead and do her post chemo scans. We found out on January 20, 2015 that Brooke was in remission. Hallelujah and Praise God! Remember me saying how Brooke was having a hard time finding a job after graduating, I truly believe it was all part of God's plan. He knew the diagnosis was coming soon and lo and behold, her doctors believe she had Hodgkin's for about 18 months prior to being diagnosed. The massage saving her life, the worst thing for a Lymphoma patient is a deep tissue massage. It releases all the toxins in the body, especially in the lymph system.

Brooke also had 15 radiation treatments. Last October on her 6 month post treatment PET scan, it looked as if her HL was back. In fact, her oncologist actually called me while he was out of town, after receiving the results of the PET and said, "It's back. I'm scheduling her biopsy immediately and let me warn you, where this one is located, the surgery is going to be rough." That was a Tuesday and we met with her surgeon on Friday as well as had her pre-op. Surgery was to be the following Monday. Unfortunately, this mass was located on her anterior mediastinum and was lying on her aorta. They would have to deflate the right lung and go in through her side, between her ribs and deflated lung to get to the mass that was lying on the aorta right behind her breastbone. Like he said, a very rough surgery. Unfortunately, due to the radiation treatments to the area, her lung didn't respond well to the surgery. She was in intensive care step down the entire time she was in the hospital. After 4 chest tubes (2 at one time) and 2 surgeries, Brooke went home the Sunday before Thanksgiving. And the biopsy, it was negative!

The Monday after Thanksgiving, we were back in the hospital. This time, a new blood clot in her lung, the other lung! Brooke will be on blood thinners for a very long time with her given history of blood clots.

Later this month, we see her oncologist again and her next PET scan will be scheduled. Time to be brave again. For me and for her. I really don't know what is more scary... actually going through it, or waiting to find out if your are still in remission or if it has come back.

Our motto is one day at a time, and be brave!
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