A change for the better....

June 10, 2010

Last night would have been a great night to have sleeping medication because I couldn't quiet my mind long enough to get any rest.  Since my Medicaid status is still pending I am not able to return to Tulane for treatment.  While the slow process of government aid took it's sweet ass time to figure out if I was deserving of coverage, I was able to get approved (based on my diagnosis and the medical debt to income ratio) for a program called Louisiana Free Care. 

This program would allow me to be seen at University Hospital and it's clinic for everything from my PICC infusion to inpatient chemotherapy with little or no charge.  After being hit with just over $350,000 in medical bills thus far, this program was a welcome piece of news.  The most important part to me was that I stayed current with treatment.  I've been fortunate thus far to have clean biopsies and labs but things can change in the blink of an eye.

Being diagnosed with cancer is enough to put someone over the edge, add to it the anxiety of not knowing where you will get treatment and what doctors you will see and you have the makings of a certifiable looney toon.  Yep...another thing to push me over to the crazy side. 

Being admitted to University Hospital instead of Tulane for my next round of chemotherapy was the least of my worries.  I also had to deal with the fact that I would not be treated by my oncologist because she was a Tulane doctor.  Then to ice my cake of possible neurotic breakdown my doctor had told me that I would need to arrive early to the hospital and "wait until they had a bed ready for me" because it is "first come first serve". 

Oh hell to the NO! 

As I shuffled around my bedroom this morning trying to decide what to bring with me for this hospital stay all I could do was laugh at how it never stops being an adventure in my life.  My mom came in to check on me and prod me along.  The one big upside to having cancer is that I can get ready to leave super fast.  Brush teeth, wash face, put on clean clothes....done!  Packing was pretty quick too.

On my list...lots of underwear, journal (because I wasn't sure about taking my laptop), pens, pillows, socks, toothbrush...blah, blah, blah.  Pretty exciting stuff. 

When we got to the hospital the woman by the registration kiosk greeted me and asked if I was back for another appointment for my PICC line.  My mom and I have been there so much at this point that they know us by face.  I let her know that I was there to be admitted for chemo.  Her smile diminished and for a second I got worried.  She looked me in the eye and said quietly, "you do know that it may take all day before there is a bed, right?"....oh lord...I swallowed hard, nodded and smiled.  After swiping my drivers license at the registration kiosk my mom and I took a seat and settled in for the wait. 

My mom offered me something to eat but I was so nervous that I was afraid if I ate I'd start throwing up and that would make the wait miserable.  I felt like I had better control of the situation on an empty stomach.  Probably not the most brilliant logic but it was working for me right then.  Before I had more time to think about it my name was called. 

At first my mom and I thought we had imagined it, but then we heard it again loud and clear.  We made our way into the registration office and signed all my admissions paperwork and I got my arm band.  We were told that my room would be ready at 10am, which was only an hour away.  I let out a sigh of relief and saw that my mom was a little more relaxed which allowed me to focus on the next hurdle...seeing who would be treating me.

At a little after 10am we were lead to the 7th floor and my room for the next week.  The nurse took me to be weighed, got me a gown and did some paperwork.  The room was smaller than the one at Tulane but it had a recliner in it for visitors and the big plus...it had a bathroom.  With toilet paper!  No potty on a bucket seat for me!! 

I got into my gown and settled into the bed to await the introduction of my doctors.  The first doctor to come in was the Internal Medicine doctor that would be lead on my case in regards to pain management.  She immediately put my mom and I at ease.  Her name was Dr. Echols and her smile was infectious with a calm and thorough demeanor that made me feel as though she genuinely cared about getting me through this in the most comfortable manner possible.

The next doctor to come in was the Hemetologist/Oncologist, Dr. Lewis.  He would be taking the place of my current treating doctor since she wasn't an attending at University Hospital. He looked very familiar to me but then again I had just been in the clinic yesterday and he probably saw patients over there too.  Both doctors wanted to discuss concerns for this round of treatment and I immediately said one of my biggest issues is nausea.  It was as if someone flipped on a light bulb in Dr. Lewis eyes because he fixed his gaze on me and said "wait a minute, you're the patient that I put on marinol at Tulane because you had horrible nausea during chemo".

Both my mother and I shouted "YES" at the same time.  I couldn't believe that out of all the doctors that I could have gotten to be treating me I was able to get the one that had been the most helpful to me when I was inpatient at Tulane.  More doctors and med students filed in and did their exams and questions.  Dr. Lewis asked if I was ready to get started or if I wanted to wait until the morning.  I'm not sure if he was really leaving it up to me to decide but I felt empowered just by the fact of him asking.  I smiled and told him I was ready to roll.

They had to have radiology come and make sure my PICC catheter was placed properly since they weren't the hospital that had put it in.  Once we got the all clear from the film and redressed the site they went over all the risk associated with this protocol.  I was going to have to have steroid drops put into my eyes every 6 hours until the chemotherapy was complete because this drug, cytarabine, if secreted into the eye could cause blindness.  There was also the possibility that the drug could cause neurological distress and possibly death. 

I had to stop myself from laughing out loud because of the irony.  I was being advised of the potential of death from the medication being given to me in order to rid my body of  a disease that if left untreated will result in death.  My mom didn't think my laughing was funny when the doctor asked if I had a Living Will and I responded that I wanted to be "DNR" (do not resuscitate).  For the first time since my diagnosis we were actually having a discussion that included the possibility of me not surviving.

I wouldn't say that I haven't let myself think about the fact that treatment may not work or that something could go wrong.  I understand that there is a possibility of death.  That thought has occupied more of my waking hours in the past several weeks than it has in my entire life thus far.  That being said I also know that I don't want to be kept alive on a vent.  It was painful for my mom to hear and I hated to have to say it especially since she leaves to go back to Georgia in a few days. 

It's not a place that I want to visit often but it needed to be done and thankfully once the discussion ended the nurse came in with the pre-medications for the chemo, one of which was Ativan for anxiety.  Once my mom saw that I was in good and capable hands she left for the night and I was alone to start the first bag of chemotherapy.

The room was quiet with the exception of the whir of the IV pump and before I realized it I was drifting off to sleep.