Sunday, June 6, 2010

I'm more of a sprinter and this looks a lot like a I'm pretty sure I'm screwed!

May 26, 2010

Do you have any idea what takes place when you find yourself in the unfortunate position of being one of the hundreds of thousands of people that cannot afford health insurance?

Well, let me tell you this....the government will put into place a system that is hell bent on making sure you pay in some kind of way.  What?  You say you don't have any money and can't pay for that medical treatment that will save your life and allow your children to have their mother around.  Oh, well since you don't have the money, we will gladly accept ALL of your time.

And with that sentiment my mother and I embarked on the adventure that was my first visit to Charity Hospital's clinic so that I could follow up with the oncologist that would be seeing me in the interim until hopefully, God willing...please Medicaid status comes through.

We had been told my appointment was at 7:45 in the morning.  We had also been told to arrive 45 minutes early to register and do any paperwork.

Since we weren't completely sure of the location we needed to allow time for the possibility of us getting lost so we left the house at a little after 6:00 in the morning.

I live in Slidell.  The appointment is in New Orleans.  My mother, who has spent the last 5 years living in Georgia would be the driver and our only assistance was a map printed by my husband, Jon, who is the only person in this equation that probably had the best knowledge of where we were trying to get to.

Moments like this made me hate the fact that A) I didn't have insurance and B) I wasn't able to have Jon with me.  The other inconvenience on this day was the fact that I was still not able to keep down any food so my strength was at an all time low.  I was on government assistance when I had my oldest child in 1994, so I wasn't completely inept when it came to how slowly this process was going to be.

We arrived at the clinic at close to 7:00 and waited to be called into a registration booth.  I was exhausted just from the walk from the parking lot that was located right across the street from the clinic.  But I knew that whining would get me nowhere, we were in for a long haul of a day.  It was time to pull myself up by my bootstraps and lean on my mom when that energy reserve ran out.

When we stepped into the registration room I was once again faced with the very real possibility that I may not be able to continue treatment on a regular basis because I was uninsured, unable to just foot the bill myself and still dangling precariously in the gray area that is "pending Medicaid status".  I just sat there numb and tired as the woman registered me to be able to have my appointment that day.  She advised my mother and I that we would have 10 days from this first visit to either get my Medicaid application approved or apply for a program that would allow me to receive treatment at University Hospital.  If we were unable to get either one of these by that deadline I would become responsible for today's visit and any subsequent visits.

As if I didn't feel like I was under the gun to keep on track with treatment and kick this disease's ass, now I had the worry and anxiety over the financial burden of this diagnosis and treatments.  All I could do was smile at the woman, thank her for the information that she had given us and then head upstairs with my mother to wait some more.

Before I had been discharged from Tulane the nurses and doctors had warned me that for the first days and weeks of being home I would need to make sure that if I was going to be out in crowded areas that I would need to wear a mask.  So when I came into my clinic appointment that day I was sporting my newly bald head and a mask.  You'd be amazed at the stares one gets by having these two.  It was quite humorous, to me, because the people that were staring were ones that should have thought SEVERAL times before going out in public dressed as they were.

Seriously people?

Hair grows back. 

Surgical masks come off and can be discarded. 

The fact that you went into public wearing head to toe plaid in bright spring tones with your partner in a coordinating outfit...that shit becomes seared into peoples memory!  Just saying is all.

We waited for another hour before being called in to see what we hoped would be the doctor for my appointment seeing as now it was well after 9 a.m. and I had been told my appointment was at 7:45 a.m. but it turned out it was just to see the nurse to get my vitals and drug allergies.  A few minutes later we were put back out in the holding room.  Which in our less than 10 minute absence had filled up even more.  As we made our way to some vacant seats I once again put on my mask.

A few moments later we heard a nurse call my name and thought surely THIS would be the time when I would go in to see my doctor.  But we were once again sadly mistaken as we were told that we needed to go upstairs to have my labs drawn so they could check my counts.  I felt light headed and tired but figured this would be one of the easier parts of my visit because I have a PICC line in my left arm.  This had been put in back when I was at Tulane, after the central line in my neck had been removed, and would be the way that I received my medication and IV fluids following and future rounds of chemotherapy and how my labs had been and would be drawn.  The doctors estimate that I can have this PICC line in for up to 6 months and given how well I had been doing with the first round of chemo and the pheresis treatment there is hope that that time frame will bring me to the outer ring of the Holy Grail of cancer which is remission.

My mom and I made our way into the lab and signed in.  There were only a few people upstairs in this room so I felt I could take off my mask.  It was making me feel a little claustrophobic.  Before I really had time to get comfortable in the hard as a rock chair I was called to have my labs drawn.  I tried to be all smiles with everyone that I met since I knew that we'd be seeing a lot of one another over the span of fighting this leukemia.  I sat down and uncovered my PICC line for the technician.  She looked down at my arm and back up at me with sad eyes and said, "oh...hun...we can't draw your labs from that".  I withered in the chair.

"Are you serious?" I barely heard the question escape my mouth because I was already feeling myself become light headed.  "Do you have a table that I can lay down on while you draw the blood because I'm a fainter?"

Nope, there would be no table and yes I would have to be stuck.  So I announced ever so politely to the technician that I would be passing out now and if she wanted to get that blood I would lay my arms out and she could have at it.

I then passed out.

I woke up to a bandage and cotton ball on my right wrist, my mother rubbing my back and a cool rag on my neck.  I gave a pale faced kudo to the tech for getting the goods while I was partially unconscious on her counter.  She just smiled and said she was used to it.  I then completely underestimated how crappy I was feeling because I tried to get up and found that gravity is a bitch.  I plunked back down, almost losing my footing and nearly taking my mother down with me.  Then as if passing out on a counter and almost falling wasn't embarrassing enough I began to feel sick.

I've never been so thankful that I had nothing in my stomach in my life, because all that came out was  a few teaspoons of bile.  I began to cry partially from how bad I felt and also because it was in my mind humiliating.  The technician and my mother soothed me with calming words and told me that it was okay.  I apologized again for being a sissy and she repaid my words with a peppermint, a cup of ice water and a bag (in case I needed to vomit again as I waited for my appointment with my doctor).

Thankfully I didn't throw up again but the waiting game was nowhere close to being over.  We made our way into the elevator and descended once again to the lower floor to wait with the masses.  I was struck by how waiting to receive government aid was a lot like going to a Catholic mass.  Instead of stand, sit, kneel it was stand, sit, and wait.  Oh God how you waited!

A little over an hour passed and we finally got to see my doctor.  I was happy that I was actually seeing a doctor that I had seen while I was at Tulane so I didn't feel as though I was adrift in the vast ocean of cancer without a friendly and knowledgeable face.  I was also happy because I thought she would be able to assist in the area of nausea and not sleeping.  I was able to get help with 1/2 of my request and for the sleeping issue I was directed to see a therapist because she felt that I "wasn't dealing well with the diagnosis".


I am one day shy of being one month into this diagnosis.  I've been home for 2 days with my family and out of the protective bubble of the hospital.  I have not eaten in close to 5 days and spend the better part of most days either vomiting or feeling like I am going to pass out from vomiting.  I have not slept since being home from the hospital.  GIVE ME THE AMBIEN AND STOP QUESTIONING MY MENTAL STATE!!

I just smiled and took the paper that she handed me.  There would be no shrink appointments in my future while I was at home.  All the therapy I needed was to be surrounded with the people that I love and know me best.  I would have appreciated the sleeping medication because, seriously....I am a raving bitch when I don't get enough sleep.  But I could see that I was clearly going to have to come up with another angle of how to get a good night's rest because there would be no little magical pill making it happen.

I was also painfully aware that I wouldn't be able to do any physical activity in order to be tired come bedtime because I literally had no energy to move while I was unable to keep food down.  I figured my best bet was to cash in on the possibility that I may just fall into unconsciousness from lack of sustenance.   My only hope if that was the case was that I would be able to wake up the following day. 

I didn't have much time to really contemplate any of this to the full extent because we were once again being shuffled back out into the massive "holding pen" that was the waiting room.  I had just spent the better part of 4 1/2 hours waiting to have a less than 10 minute appointment with my oncologist.  All I could do was chuckle inside because I literally had no strength to do anything else. 

As we made our way back out to sit with the masses my mother asked what we had to wait for now, because I had my labs drawn and I'd seen the doctor.  It was an honest enough question.  I mean, I thought we were why couldn't we just leave?  It turns out that there was still one more hurdle to clear. 

I still had to be discharged and have my follow up appointment made. 

This took another 30 minutes of my life that I will never be able to get back.  When we heard the nurse call my name I had to keep myself from clapping with joy.  It was like I had won some kind of cancer patient lottery whose prize was being able to go home and climb in my own bed to sleep off the exhaustion that was this day.

All I can think as I sit here writing is that I am gonna need a bit more strength to keep up this marathon pace.  I've never been good at pacing myself.  Guess I better learn fast.

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