Thursday, March 22, 2012
A Wrench in the Works
You have to understand that I've been writing my life story for my whole life. It isn't easy for me and is even more difficult to share my writing. With that being said, I really do appreciate any feedback.
Here is an excerpt, enjoy.
...I think that one of the most intense moments in my life came about 5 days after I was originally admitted to the hospital.
Even writing about this experience right now has my blood pumping hot through my veins causing my hands to clumsily slide all over my keyboard. Having to put my head back into this period in my life is very intense and involves a lot of emotion.
To really understand the gravity of the situation, I'll have to take you back to that first week before I thought I would end up in the hospital in the first place. I had been having kidney pains for a week or so and was reluctant to let Carley know about it. I had previously had a kidney infection that was seriously painful and I didn't want her to worry.
Finally the pain had become to much to bear. It was a horrible piercing pain in my left kidney and I knew something was not normal. I was annoyed to have to go to Urgent care in the first place to wait in the Vicodin scented lobby, take my clothes off, pee in a cup, put my clothes back on, wait, get antibiotics, and spend the next two weeks fighting nausea because I continually take my medicine before eating food. To add to the stress, I had recently been fired from my job and didn't have any kind of insurance to cover what was likely to be a half million dollar doctor visit, not to mention the prescriptions. My brother, Jacob, was over and he and Carley managed to shove me in his tiny Mustang and he drove me to Urgent care. I fell out onto the pavement immediately after we arrived, thankful we had made the 2 mile drive alive. It was Friday at about 8:00pm, just under an hour before closing, and the nurses looked annoyed as we entered in the lobby.
Paperwork. Paperwork. Paperwork. Give ID. Answer questions about not having insurance. Tell them about getting fired. Answer questions about payment options. Answer questions about income. Paperwork. Wince from pain in kidney. Hate that the receptionist thinks I'm faking it. "On a scale from 1 to 10 what is your pain level?" Wait. Watch fuzzy National Geographic documentary on TV. Laugh about it with Jake. Wait. Find Things in Highlights.
"The doctor will see you now."
Now, I don't think that I could possibly pick this doctor out of a lineup. The visit seemed so innocent to me and being the medical expert that I was, I was certain of exactly what would happen. I'd be in and out in 20 minutes with antibiotics and pain meds, back to working order in a day or two. So... I peed, came back to the room, read magazines and shot the breeze with Jake while we waited for the doctor. His news was the first curve ball.
"Well, Julia. It seems like your kidneys look fine. The results on your urinalysis came back clear and shows no signs of infection. I want to prescribe you some pain medicine for the weekend and come back Monday for an ultrasound. Because you don't have insurance, and ultrasound at the clinic across the street will be far less expensive than if you go through the Emergency Room. Just come back here to Urgent Care on Monday morning and I will have the orders written up for the exam so you can head straight to the image center."
The weekend proved to be nothing more than a blur of TV shows, kidney pain, Vicodin, and falling in and out of sleep. By Sunday morning I had burned through every one of my pain pills and was starting feel some serious pain again in the lower left side of my back. I was very concerned that I could not afford the tests in the Emergency and spend the entire day doing whatever possible to ease the crippling burning sensation in my back.
After an uneasy night of sleep, I woke up Monday morning with a sense of hope that this pain issue would be resolved. Arriving at Urgent care about 2 minutes after they opened their doors, I was surprised to hear that the nurse could not find record of any orders for a patient with my name. It was even more disconcerting to discover that there was no record of my coming to the clinic at all the Friday before.
"If you need immediate relief for your pain, you may want to consider going to the Emergency Room," the annoyed nurse suggested. I was livid. I spent all day Sunday writhing in pain to avoid the cost of a visit to the emergency room and now I was being sent there anyway.
When I explained this situation to the nurse at the counter, she said that the doctor was not working but she could try to contact him to verify the orders for the Ultrasound. She also informed me that this would consist of alerting him on a pager and he could respond within 2-4 hours.
To expedite the process, we just left Urgent Care and headed to the emergency room. I was admitted fairly quickly and finally received some pain relief from the I.V. After another urinalysis, the doctor decided to run a CT scan to check on my kidneys because there is no other sign of infection.
It was pretty early in the morning and after the scan Carley and I sat together in the tiny little room in silence together. I was only fairly aware of what was happening to me (drugged) but I was very aware that Carley was nervous. I don't know how long we sat there with the faint sound of Roseanne reruns in the background but it seemed like forever. Finally the doctor pulled back the curtain and appeared with a clipboard. He looked serious but somewhat confused, possibly uncomfortable.
"Your kidneys are fine. There is no inflammation or infection. However, it looks like you may have Lymphoma."
I had no idea what he just said.
With very little hesitation, he continued, "We are getting a room ready for you on the 5th floor," he paused and looked at me over his glasses, "that's the cancer floor." He glanced back over to his clipboard, flipping through the same three pages, likely hoping to find a sheet of paper with suggestions on bedside manner. Apparently not finding what he was looking for, he added, "If you have any questions, they will be able to answer them once you get up to your room upstairs." He tucked the clipboard under his arm an disappeared once again behind the curtain.
"Well, shit." I said, or something equally as brilliant. I looked over at Car who had already stood up and was standing by my bed. I grabbed her hand. I didn't know what to say. The nurse gave us the sheet for the room I would be moving to and had be sign some billing responsibility paperwork. She informed us that someone would be along shortly to move me, in my bed, to my new PERMANENT room.
"Car, call my Grandma and call your Mom. I need someone here that knows more about what is going on." She piled all of our belongings onto my hospital bed, kissed me gently on the forehead, and walked outside to make the calls.
The next thing I remember was a day later. I had been moved to a room upstairs. I remember it being very homey. Flowers and balloons and a LOT of pictures of my friends and family. Oh wait, never mind, those are my family members. They look a lot different though my dilaudid glasses. I ask Carley, stationed faithfully in a chair near my bed, to hand me my real glasses. It helps to pull the faces out of the frames but weirdly they don't look that familiar. I had to open and close my eyes several times before I began to recognize the people littered around my room. My kidney was still a little painful and I asked Carley to push the button on my pain medicine pump. That was the end of that day.
A few days passed with people coming and going and offering help and laughter. We met several different doctors all of who said that I had what looked like "Lymphoma." We assumed that this was a form of cancer based from our stay on the "Cancer Floor" but it was never officially confirmed by anyone that we met. I think that this was the most difficult part of this phase. Confusion and worry was causing a lot of tension for all of our friends and family.
Scan. Meet surgeon. Biopsy. Meet new doctor. Worry. Move rooms, across the hall. Scan. Meet with new doctor.
After I had adjusted a little bit to the effects of the dilaudid, I finally was able to tune in to what was going on. The visitors had started to settle down by the 5th day we were in the hospital. It was late in the evening and the room was vacant and quiet. Because we had so many people coming to show their support (thank you, all) There were very few instances when I was awake, and Carley and I were alone. We hadn't talked about anything so far in any amount of detail.
Carley and I were watching the television and playing rummy alone when the doctor came in. I don't remember her name or what she looked like but this was the first doctor to offer us an official diagnosis after my biopsy. The three of us sat solemnly together as she gave us the news.
"Hodgkin's Lymphoma. The cancer affects lymph nodes located throughout the body. Your scans show that your lymph nodes up and down your abdomen and neck are primarily affected. The pain in your kidney is a result of an enlarged lymph node swollen to 4x its regular size and it is pressing up against your kidney. Chemo therapy will be our next course of action. Your regular oncologist will be here tomorrow to talk to you about this next step."
She walked out leaving shock and silence to fill the room behind her.
Even though much of this time is foggy and jumbled, what happened next will always be etched perfectly in my memory. Carley closed the door and walked back to my bed. I lifted my blankets, shifted to the right and lifted my left arm. Carley crawled in beside me and buried her head in my neck. We laid together only seconds before we both began to cry. I closed my eyes as the room seemed to grow larger and the two of us shrank down to only a small speck on the ground. Enormous IV tubes, syringes, and prescription bottles filled the room as we lay tiny and helpless on the bed. I was too terrified to open my eyes for several minutes. I pressed my lips gently against her forehead again and again hoping to find a sense of relief in the whirlwind of information we were foraging through.
"Can you die from this?" she whispered to me.
"I really don't know."
[The next excerpt (in chronological order) is The Ugly Truth Pt. 1 followed by The Ugly Truth Pt. 2 Click the links to be redirected to the other excerpts.]