What's black and blue and red all over?

June 22, 2010


Today was just supposed to be a routine appointment at University Hospital with the chemo infusion nurses that would flush my PICC line, remove the current bandaging, clean the area and then apply a new bandage.  I convinced Olivia to come along for the ride because it would be a short appointment and we would probably go have lunch after we were done.  I had her at food, even though she seemed mildly reluctant because she hates needles and hospitals.  But throw out a meal and you can coax her to do just about anything. God I've raised her to be just like me.

We got to the appointment right on time and I was thrilled to see that on top of my two favorite nurses from my previous visits, Theresa and Helen, there was also the nurse I had during my biopsy named Alina.  She actually hugged me when she saw me.  It felt really good.  Out of all of my appointments this is the one I enjoy the most and it isn't because I'm not getting poked and prodded on.  It's my favorite because these nurses are always so upbeat and full of smiles.  Oh and because they give me stuff, so that ups their likability factor.

In case you have ever wondered....yes, my affection can be purchased.  I keep a list on the ready in case I'm ever hit with the opportunity to pick anything I want and it will be purchased for me.  I'm a goof, what can I say? 

Anyways...lets focus on the matter at hand.  Alina lead me to a room where she would flush my PICC line, draw blood for lab work to show what my platelet and blood cell counts are followed by having my bandage being changed and a final saline flush.  If all my labs come back okay then I won't have another doctor or hospital appointment this week.

The appointment was both quick and painless.  Oh happy day for everyone involved....especially my left arm that holds the PICC.  Before leaving the hospital we stopped on the 7th floor so I could bring some sweets to the sweet nurses that cared for me just last week.  Nina, who was my FAVORITE nurse (she's the one that brought me a cup cake) got out of her chair and said "Jessica Pettus...what are you doing here?"  I was floored that she remembered me by first and last name.  I really do adore her.  She was so appreciative of the candy.  I quickly thanked her for the exceptional care she had given me last week, hugged her and then let her get back to a meeting that she was in.

I went to the nurses station and dropped off some goodies for them as well.  Everyone kept asking why I was back on their floor.  I told them it was just to visit and bring treats.  I let them know if we can't get my Medicaid status figured out they will be seeing me every week and for a 1 week stay per month, so if they wanna get rid of me they need to take it up with the Medicaid office.

My bag of goodies was empty and it was creeping towards lunch time so with tummies rumbling we made our way out into the rain and headed back to Slidell.  My MIL let Olivia pick where we would go for lunch.  She picked Times Bar & Grill.  YUM!  We had a good lunch.  I ate tooooo much, but it was so tasty.  I mean really.....to leave a morsel of that delicious bacon cheese burger lingering all by its lonesome on the plate would just be wrong on so many levels.  Of course once I was done eating I immediately realized that we would need to get me home.  Straight home.  Quickly and safely as possible.

Since having chemo therapy my digestive system has been more out of whack than under normal circumstances.  The other thing that I am dealing with is that after anything I eat, whether it be a big or small meal, I begin to feel lightheaded.  I don't like either one of those occurrences to take place while I am far from home.  What can I say....my hiney prefers it home toilet. 

Once home and feeling a little lighter in the shorts and not so light in the head anymore I took Penny for a quick walk and then deemed I was deserving enough for a nap.  I took my afternoon medication and made a phone call to Allison to touch base and see how things were going in her neck of the woods and with her gorgeous and completely yummy baby boy Doran.  We were on the phone for a good 10 minutes when I moved the sheet that had been laying over my left leg.  At first I thought it was a shadow, but when I clicked on the bedside lamp I saw that my leg was covered from ankle to hip in black and blue bruises. 

I quickly looked at my right leg and while there are considerably smaller amounts it began to freak me out.  I told Allison that I needed to let her go so that I could call my doctor.  It was a little after 1p when I got a call back from my doctor.  She said that she was awaiting the lab results which probably wouldn't be in until tomorrow.  She asked if I had any other symptoms besides the handful of bruises.  I advised her that the pain in my left side has worsened, dry mouth still persist, continual nausea but am able to keep some meals down but there's been no fever, nose bleeds or continual vomiting or diarrhea.  Her response was that if I was really concerned based on the symptoms I listed then I should go to the emergency room at University Hospital.

I quickly dismissed that as being necessary.  All I was having was some bruising and the other side effects I'd relayed earlier.  If I wasn't being told that I HAD to go IMMEDIATELY that it's a LIFE OR DEATH situation then I was gonna call my best friend back and finish our conversation.  Which is exactly what I did.

After catching up for about an hour I decided that I was going to take a nap.  I sent Jon a text to let him know that I was laying down.  I would have my phone on but I didn't want him to worry if I didn't answer on the first call.  There is a history of him trying to call me and me not picking up.  It's lead to many a discussion because it is always when there is something important or time sensitive that needs to be addressed. 

I thought I was being proactive with my phone call.  That is what I get for thinking.

I fell into a deep, deep, DEEEEEEEP sleep.  I finally woke up close to 4pm.  I'd slept a little over 2 1/2 hours and I felt so refreshed.  I made my way to the bathroom to pee and immediately noticed that my original 1/2 a dozen bruises that had prompted my call to my doctor earlier had multiplied like rabbits or worse Bebe's Kids. And as I looked closer at a few different areas on my leg, stomach and arms I could see what could possibly be petechiae starting to pop up, but I wasn't completely sure.

I finished up in the bathroom and made my way back to my bed to grab my phone.  Just as I got next to the bed I saw that I was getting a call from Jon.  I picked it up and the fury was unleashed.  The words were coming out so fast at first I had no idea what the hell he was attempting to tell me.  After about 30 seconds he calmed enough for me to understand that my doctor had called with the lab results and when she was unable to reach me, she phoned my mother who gave her Jon's number and between my mom and Jon they had been trying to reach me for the past hour or more. 

Bottom line....I needed to get to the hospital immediately because my platelet and red blood cell counts were dangerously low and I required a transfusion.  Great...just frigging great!!  Then she follows it with "you'll need to be in hospital 1 to 2 day or more if necessary".  This made me think she had already arranged a bed for me, but I know that to assume will only end up making me look like a jackass who will then have to sit and wait in the germ infested waiting room.

I inquired if there would be a room waiting on me when I got there because we were walking out the door right that moment which meant we could be there in less than an hour.  She said "oh no no...I cannot get a you a bed assignment.  You have to go to the ER tell them that I sent you and then you will be admitted through them".  Oh well that makes things SO MUCH BETTER!!!!  Ugh...sometimes I swear I am either being tested or punished by what I deem to be non common sense thinking individuals.

I thanked her for getting the lab results back to me so quickly and told her I was on my way to the hospital right now.  I had appeased one person that had been trying to track me down so it was time to move on to the next one.

My mother.

Thankfully she wasn't as flip as Jon was.  She just figured I was sleeping and had my phone turned off.  She was worried but she admitted that what made her the most anxious was how my doctor made it out to be a life and death situation.  Damn doctor!  Ergh....

This is strike two on me missing an important doctor phone call.  From now on I'm going to have to sleep with it duct taped to my head so I will hear the ring AND feel the vibration.  I'd like to stick it somewhere else so I could reap the benefits of the vibration setting, but the thought of duct tape having to be removed from my lady bits....well, yeah....there's no call important enough for that type of pain.

Jon informed me he was on his way to get me so that gave me approximately 8 minutes to pack a bag.  Hmmmm....what to pack, what to pack??  I'm going to be inpatient for at least 2 days so its 1/2 a dozen pairs of underwear, 1/2 dozen pairs of socks, 3 pillows, journal (because I still don't know about whether I can have my laptop with me), pens, lots of mint gum, one chocolate muffin, body wash, shampoo, toothbrush and a slew of magazine's.  Woo hoo...it's like going on vacation only not one that you can get lots of people interested in going to visit you on.  It must be the less than exotic locale or the fact that I am the only one partaking in the "cocktails" aka IV morphine.

Jon got to the house and I could see the anger in his face.  When he finally spoke it was through clenched teeth.  He told me that he wasn't pissed as much as he was scared.  The fact that neither him or my mother were able to get me on the phone made him worry that something had happened to me.  The drive was silent for a little bit but after I apologized for the umpteenth time he lightened up and we pulled into the ER drive. 

I went inside and filled out the admission sheet.  The nurse at the admitting desk was kind enough to provide me with a surgical mask since I was only a week out from my last treatment.  I took a seat and could feel the stares.  Bald woman, with a mask and two tubes hanging out of her arm makes for some double takes no matter where I am at.

I took my paper back to the admissions desk and she whispered that they would work as fast as possible to get me into the back to lessen my exposure to other patients.  I thanked her and went to sit back down next to Jon.  I don't think a full 10 minutes went by before I heard my name called. 

We stepped into a triage room where my vitals and medical history was taken.  I got my admissions arm band and bright yellow one to alert doctors and nurses of my allergies.  I was styling now!  The triage nurse said that I could go back in the waiting room and someone would be out for me shortly.  Jon and I took a seat and this time it was barely 5 minutes before my name was called and I was cleared to go into the treatment areas.  Jon, however, was unable to come along with me due to strict visitor rules. 

I kissed him on the cheek and wearily waved at him as I made my way to a curtained area.  Bed #13 would be my new digs for the next few hours.  No sooner was I gowned and covered by the sheet provided I could hear the nurses discussing my case and how I really needed to be in an isolated room.  Apparently this was a hard thing to accomplish on this particular day because of a few unruly patients that were either screaming or being hostile.  Part of me wanted to stay in what seemed to be a safe little corner, but hey if I could get my own room, that would be nice too.

Another 2 hours passed and they found an isolated room for me.  Since my reports from the labs earlier that day showed my counts to be dangerously low it was deemed that anyone entering my room for any period of time would have to be masked.  They completed all of the paperwork and then it was time to focus on drawing labs and preparing for the transfusion as well as waiting for a call for an empty bed upstairs.  As I sat and waited for someone from the IV team to come and get my PICC working, because it had decided to take a shit and not work.  I had just had labs and fluids flushed through these lines less than 8 hours prior and NOW the bastards decide not to work.  Great.  Great.  Just frigging great.

In an attempt not to delay things any further I told them to draw the labs from my other arm.  I hate having to be stuck, but I was laying down so when I passed out I wouldn't harm anything and I was also starting to have a great deal of pain since I was now more than overdue for my scheduled dose of pain medication.

After the nurse that drew my labs and the one that was working on my stubborn PICC line completed their task I asked to see the doctor.  More and more petechia began to sprout up.  There were a few inside my mouth which was a first for me.  The other troublesome matter was the fact that while my constant companion, left sided spleen pain, was holding steady at a dull ache there seemed to be another organ that was unhappy and wanted to join the "lets torment Jessica party" that  seemed to be in full swing at the moment.

I was so tired and hurting so bad that I just wanted to cry, but that would only make the situation worse.  As it creeped closer to 10pm I told Jon that he should leave and head home.  I knew that I was going to be admitted, at some point, and there was no reason for him to lose an entire night of sleep over this.  And there was the matter of Olivia being home alone.  As much as I'd like to have him with me, priority one is always the kids.

I tried to sneak a kiss from his masked face before he made his way out the door, but was not successful.  Once Jon left I had no real distractions which meant I was free to focus on how much pain I was in.  I was beginning to feel more miserable by the moment and now I was going to have to drink some chalky contrast in order to have a CT of my abdomen.  Why must some diagnostic test be so damn disgusting??  Seriously, having to down 16 oz of gooey chalk berry flavored grossness that resembles milk but has the consistency of finely ground chalk sticks.  It is not an ideal task to have to accomplish when you don't feel like putting anything in your mouth, let alone swallow and keep down for a predisposed time frame.  My advice to those that ever have to drink a barium contrast....make sure it's cold...make sure you have a straw...suck as much as you can and swallow....then wait a minute or two and do it all over again until complete.

It's not rocket science but hopefully it will help someone as it has helped me.  I'm a giver of unsolicited information and advice.  Your welcome America.

It's just after 2 am and I am finally being transported to my room on the 8th floor.  I'm a little bummed that I couldn't be placed on the 7th floor with all the lovely nurses that I had when I was last admitted, but I was hopeful that I'd have a new crop of great caregivers. 

I'm so very tired.  More bruises and petechiae are sprouting up by the hour.  I'm settling into my quiet room.  There's a constant whirring noise coming from a fan they have placed in the room.  I told the nurse she could turn it off at anytime as it blew her papers around and she was forced to stop and start writing a few different times.  She chose to leave it on so I just watched her become more and more agitated. 

Then there was the fact that I had to be kept in an isolation room.  Anyone coming into the room had to be not only masked but wearing a gown as well.  This particular nurse was having major wardrobe malfunctions with the not to compliant blue plastic gown.  I felt really bad that she had to wear it because I could see how hot it was making her.  That may have been why she was adamant in keeping the fan on.  This woman was the key to me getting pain medication in the very near future so I wasn't going to do anything to upset her apple cart.

As time ticked by and I came closer to starting the first unit of the blood transfusion she began to take on that lunatic tone.  When I had asked for more water and ice she asked who had brought me some the first time.  I said that I didn't remember the nurses name but she was short with pretty eyes.  My nurse snatched up the cup and pitcher and dumped it out and brought me sterile water.  Are you kidding me?  Now I've got to worry about water making me sicker.  Jesus....I really wish I could have a good stiff drink right now.

I'm pretty sure this is gonna be a LONG night....ergh, scratch that it's after 3 am now so technically speaking....oh who the fuck cares, this is gonna be one hell of an experience getting one on one nursing from someone that has the potential of making Cybil seem a bit normal.  Pray for me people...pray hard!

I'm more of a sprinter and this looks a lot like a marathon....so 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 Lord...my 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".

ARE YOU FREAKING KIDDING ME??

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 done...so 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.