Cristal’s Journey Part 2Posted by rcameron on Mar 13, 2012 | 11 comments
CRISTAL'S JOURNEY CONTINUED…
By Amber H.
Well…like every roller coaster ride, what goes up, must certainly come down. It's been a ride with as many twist and turns imaginable.
After we came home from the hospital, everything seemed good in the world, synergistic. Unbelievably happy after surgery. Then, the Anastasia wore off. Her right leg swelled up and the doctors feared we'd be rushing her right back to the hospital in fear of a blood clot.
Of course, this was midnight after an exhausting hospital stay so we were both operating on fumes. It turned out, that one of the resident doctors didn't add two prescriptions that were crucial for Cristal. So I found a 24 hour pharmacy and she was back, and so we thought until the next morning when her head started to feel like it was going to explode.
Her back pain returned and the nausea settled in. All she could taste and smell were chemicals from the surgery. The doctors wanted Cristal to come in for lab work on Monday which meant she couldn't eat. But first we were going to the back doctor, the orthopedist we were dieing all week to get to. When we got there we were greeted by a rude male receptionist who clearly hated his job and people. He told her she wasn't on the schedule for Monday. She was on the schedule for Tuesday. Cristal pleaded her case. He didn't care or pretend to care. It turned out, the oncologist cancelled her appointment and rescheduled her without telling Cristal. But Cristal was able to talk to the orthopedist and they squeezed her in. We wanted to stick our tongue out to the rude receptionist but then we remembered that there we would be follow up appointments. =)
I spoke to you all about a vertebralplasty where they cement one of your vertebrae to stabilize your back. Well the Orthopedist didn't want to do the procedure yet because Cristal had been under so much Anastasia. He suggested a lumbar epidural instead. We were like, fine. We'll take it.
So afterward we headed to St. John's to get our labs done. Come to find out, the lab was closed. So the nurse practitioner sent us next door. Yes, Cristal was still fasting and about to fall over. So we drive to the next lab only to find out that no one there knows how to draw blood from her porticath. You need a RN or an Oncology nurse to do it because there are special instructions. They advise us to come back tomorrow. We were like, NO! We don't want to come back tomorrow. We are hangry, (hungry plus angry) exhausted and beat up!
We went home and thankfully, one of our good friends made Cristal some Chicken Vegetable Soup. There was no time to figure out dinner. Cristal was feeling worse. That evening, her nose started draining and bleeding. The tissue in her head was coming out of her and she was miserable. Nothing made her feel better. I felt worse than helpless.
On Wednesday, we took her to get her lumbar epidural which meant she was FASTING again, always hungry. The earliest they could get her in was 1:30PM. So I took the morning off of work and waited with her but the ER was backed up at St. John's and she didn't get her procedure done until 3:30PM. So again, she was hungry and feeling awful. I had to leave and another friend came and waited with her. Timing was everything that day because Cristal still had to hit UCLA Westwood to see her Ear Note and Throat Specialist who assisted the neurosurgeon during the surgery. He needed to scope her nose to relieve the pressure Cristal was feeling.
Well they got to Westwood around 4:30. Cristal described the pain of being scoped as being internally tortured. The doctor had a table of long instruments that he used to go up her nose and beyond to clean out scabs and scrape other nasal obstructions. What was worse was he had to do it three times. Finally Cristal said she couldn't take it anymore. He assured her he was done. He patched her up and left the room. Cristal stood up, took three steps and the blood poured from her nose. She couldn't catch it. She aimlessly looked for Kleenex, anything, considered the paper towels and the discomfort that would follow and finally found the tissue but she had lost a lot of blood. The nurse called for the doctor and they laid her out on the bed again. Of course, she was still starving. An hour later, now 6PM, she was on her way home. Another exhausting day.
Thursday, was a better day. Her back felt a little better. She could breathe though she was still nauseous. We went to the Oncologist and got her labs taken care of trouble free.
Friday was another challenge. The smell that had been plaguing her was still there. She threw up and it about paralyzed her with a burning pain. Then the headaches followed. I gave her an ice pack and that felt better. We paged her doctor and they had her take a whole pain killer which Cris never does, but she felt better.
So that's the story for this week. It was a challenge. Tomorrow she starts chemotherapy. She's been eating foods to boost her red and white blood cells. She's napping right now. She still has a headache but one moment at a time, right?
Cristal wanted me to tell you thank you for sending her love, cards and gifts. She hasn't had a chance to write thank you cards but they're coming. After reading about this week, you know why.
I forgot to tell you that we're going to meet with another doctor specializing in the brain so that she can start radiation as well. Thanks for all of your support everyone.