Monday, December 13, 2010

This...that...and my mother!

August 1 - October 13, 2010   

Once again, I've fallen behind in my posting and I really wanted to share this with you guys.  Hope you enjoy and hopefully in 2011 I can get on task with writing on a regular's to hoping.....

"Damn you cancer and your ability to sap my energy, steal my will to wear things other than pj's and  taking my hair and then letting it grow back with what seems to be a permanent bald spot front and center!  But mad props for the weight loss...haven't been this size since 2004!!"

I know that it has been a long, long, L-O-N-G while since posting and I had said somewhere either in a past post or in my chemo induced brain fog that I wouldn't cease to post and in a sense "let the cancer win".  I apparently had seriously underestimated exactly how tired one gets in the actual moment to moment battle against a disease that is hell bent on destroying me the way that I destroy jewels in my beloved time passer Bejeweled Blitz.

It's been a wild and crazy ride since the post at the end of July. 

Friday, December 3, 2010

Tis the season to give...The Fresh Air Fund

To even try to list the number of things that I've taken for granted over my now close to 34 years of life would make for a very long and probably boring post.  I could go on about how I believed that air conditioning was free and everyone had it because the days in Florida were too hot for it to be a "luxury" item.  As I've gotten older, I've learned the hard way that the line between need and want can be easily skewed.  My kids for instance are blessed with green areas to play in that aren't overrun with the toxicity of industry.  We spent last Friday night with a friend and his family roasting marshmallows out by a bonfire and have plans to do so again for the New Year.

My children can walk two streets over and be immersed in a wooded area that is fit for exploring that when you are in the middle of it you almost feel like you are worlds away from the bustling little city that we live in.  Every child deserves the chance to be surrounded by nature.  To nurture the explorer in us all is one more way to keep the innocence meter full.  As the giving season has now commenced I urge you, my readers, to think outside the box and give to The Fresh Air Fund.
I hope you all continue to have a wonderful Holiday Season.

Much Love,

Wednesday, October 27, 2010

Don't make promises you can't keep, but more importantly...never say never

Wow, in reference to the last post I made on this blog,  ya know the one of "I'm gonna post again within the next 24hrs.  I promise" seems that I think 24hrs is somewhere in the ballpark of approximately 42 days!  Don't you wish you ran on my time schedule?? Just think of all the things you could accomplish!

All joking aside, my last post back in September really was meant to be followed up on with another post just a mere 24hrs later.  True story.  I had been working on a piece that unfortunately had taken almost 7hrs.  It seems that once I was diagnosed with leukemia whatever bladder function I had remaining from pregnancies, surgeries and the mere cruel workings of that bitch mother nature had gone out the proverbial window leaving me with a need to pee every 5 seconds opposed to my normal once ever 20 minutes.  Thus taking my writing time and quadrupling it!  Add in nausea and my mother coming to check to see if I was breathing, awake, hungry or did I mention breathing and a normal session that I could have knocked out in an hour or two tops without so much as 1/2 dozen trips to the potty (usually with laptop in's not like I haven't done it before, example "Tales from the Crapper") had been turned into an arduous non multi-tasking catastrophe.

Being diagnosed with leukemia SUUUCKSSSSSS!!!!  Being diagnosed with leukemia and NOT being able to write and express my frustrations with previously stated disease SUUUCKSSSSSS ASSSSSSSS!!!!

Wednesday, September 15, 2010

It's coming...I promise....

I have now spent the past 5 hours trying to work on my next blog post.  Thanks to tons of emails and Facebook prodding I have decided to put the little bit of energy I've got in any one given moment into updating how things have been going in the close to 2 months since my last post.  I did not, however, realize that it was now after 3am and as much as I'd love to finish and post.....I've got to get some sleep in order to keep the evil cancer cells at bay.  

You have my word that a new post with all the fun filled details of possible liver failure, how 28 days between treatment was close to doubled causing massive anxiety and how the one of the worst moments in my life brought about one of the most magical moments in over a decade.....

Stay will all be brought to your eager eyes in the next 24 hours.


Saturday, July 31, 2010

Contrary to popular belief I am not dead...

There are a few things you must know when you start a blog that has something to do with a life threatening illness....if you go more than a week, possibly two without posting you will get emails from people asking if you are still amongst the living!  I am happy to report that while I have been tired and weak as hell, I am still very much alive.

Tuesday, June 29, 2010

Yeah I've got counts in low places....

Today I had an appointment with 2 of my favorite nurses, Theresa and Helen, on 8th Floor East to have my PICC line flushed, bandaging changed and labs drawn to check my cell counts.  Last week when I came for this type of appointment I was feeling pretty great.  I had a good deal of energy and was pretty certain that my lab work would reflect a normal cell count and I'd be free from hospital visits until the next week when it was time to have labs drawn again. Last weeks labs came back with low red cell and platelet counts so I was the proud winner of a 2 night stay.

Monday, June 28, 2010

Rainy day and lunch with a friend...

I woke up this morning feeling very tired.  Not the weak, fatigued tired from Friday but just a blah, kind of maybe I could use a little more sleep kind of tired.  I went out to the kitchen to make myself something to eat so that I could take my morning medications. 

After eating my toast and drinking my hot tea, I headed back to my bedroom with Penny bouncing down the hallway as if she were a gazelle.  God I love that dog.  She makes me laugh and smile every time I am around her.  She's pretty much my 3rd child.  I know that I am breaking all sorts of rules by having her close to me while I'm undergoing chemotherapy (so if you are my doctor or one of my nurses and you are reading this...please pretend that I have one of those Men In Black flashy things and forget anything that pertains to my dog but remember EVERYTHING that pertains to curing me) but I know that my heart would break and I wouldn't do as well without being able to have her near.

My good fortune....cookie, didn't make the list.....

June 26, 2010

I finally feel semi human again.  Of course it is coming just in time for me to go for my next lab appointment on Tuesday which if my counts dip again will find me back in the hospital for another round of transfusions.  But I'm not gonna think about that right now.  Especially when Jon has decided to treat us to take-out from our favorite Chinese restaurant here in Slidell called Yee Chinese.

I have to limit my time out and about in public places for the next few months since my body is susceptible to just about any and every germ or bacteria that could be floating around or lurking on surfaces.  So with that being said my ability to go out and grab a bite to eat with family or friends is a big "no, no" for the time being.  When Jon offered to bring home Chinese for dinner both Olivia and I did a little happy dance.

I'd rather have a freaky Friday than a weaky one....

June 25, 2010

I got discharged from the hospital yesterday.  I ended up having to be in for an extra day because I was in excruciating pain that I was in with my unruly spleen.  The transfusions went great and I really didn't suffer any adverse reactions to them which was great.  I felt bad for the nurses that were caring for me because I was being kept in isolation while they brought my counts up so anyone entering my room had to put on a surgical gown and mask. 

The mask drives me crazy when I have to wear them.  You get overheated because your breathing in the same hot breath that you just released.  Unfortunately I will have to get used to it because if I intend to go out in public at all for the remainder of my treatment it is imperative that I use these masks.

So I was pretty happy to get my walking papers and be able to ditch the mask in exchange for my comfy bed and use of my laptop.  The only problem seems to be that I am so very, very fatigued.  I got home from the hospital yesterday and immediately laid down to take a nap and ended up sleeping until 9p.  I made my way to the kitchen for a bottle of water and then shuffled back to the bedroom and took my Ambien so that I could go back to sleep.  With little effort I was able to fall back to sleep within 10 minutes of taking my medication. 

Waking up this morning I felt like I was moving in slow motion.

You've got some spleening to do....

June 23, 2010

After hours of waiting to get into a room I was told that my transfusion was going to be put on hold for an hour so that they could perform the CT scan on my abdominal region.  I was so exhausted that I would have agreed to a rectal probe if it meant that someone....anyone would A) give me drugs to kill the pain or B) would give me something to knock me out so I could get some sleep.

Sadly I would be getting neither and thankfully no rectal probe necessary.

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 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 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'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!

Sunday, June 27, 2010

Who's your daddy....

June 20, 2010

Being back on the ambien makes for an early rising Jessica.  Sadly it's like at the butt crack of dawn or in the case of today...way before dawn at 4 am.  What the shit??  A cancer patient needs to sleep!! 

Ugh...why can't things just go normally?  I made myself lay in bed until there was sunlight and then I went to roam the house.  Once Jon got up and was trying to get ready to take the dogs out for their first of many walks of the day I decided to give him a little Father's Day gift of walking the two bigger dogs. 

This was the first mildly physical thing I have done since being home from the hospital.  Granted the dogs didn't get their usual around the block walk but I did take them to the stop sign and back.  Juniper and Mally both did their business but as we were making our way back to the house I was realizing that I had bitten off more than I could chew and may have to crawl back to the house.  Just as I was worrying that I should have brought my phone in order to prompt a rescue mission Mally ran into a yard and started to drop her third poo of the walk.  I immediately said "NO" very firmly and pushed the button on her shock collar that issues a tone and not the shock which is her warning of get where you need to be or the shock is next.  So she pops up and starts to run but she is still pooping.  Finally she breaks into a run and the final turd comes flying out and literally torpedo's over her head and almost collides with her nose.

I began to laugh hysterically which gave me enough endorphins to make it back to the house.  Jon was waiting and although he was a little perturbed that I took the dogs on my own he was thankful for the gesture.  It's been hard on him juggling everything and not really having any downtime.  I wanted today to be as stress free as possible.

Dear God in heaven, please let there be no medical crisis on this day.  We need a day of's with me, okay?  Thanks a bunch.  Love Always, Jess 

I began to feel hungry so I offered to make breakfast.  It felt good to be cooking again.  I kept it simple with just eggs and toast but I felt as though I had accomplished a lot given how I've been feeling prior to now. 

Hannah called and wished Jon a Happy Father's Day and I did the same with my dad.  Olivia came home from spending the night at a friends house and we commenced with giving Jon his gift.  So what do you give the man who really has nothing, wants everything (that is super expensive) and is carrying the financial weight of the family on his shoulders? 

A six pack of beer and his favorite snacks are a great place to start.  We also got him a t-shirt, a book about the history of war (yep, he's a history geek) and the DVD set of the original "V" television series that scared the shit out of both he and I as kids.

I wish I could have done more because without him I don't think I could be as strong as I try to be everyday battling this disease.  He and I have had our fair share of issues but the one area that I've never doubted him in was the role of father.  I feel blessed knowing that should anything go wrong my girls will continue to be loved and cared for in the same manner that they have been for their entire lives.

I hope next year will find us celebrating his fatherdom with me having a clean bill of health.  Here's to wishing.

Driving Mrs. Crazy.....

June 19, 2010

Tomorrow is Father's Day and the first thing that crosses my mind is FUUUUCCCCKKKK I haven't even gotten the man a card.  I know that I can use the whole "I've got cancer" excuse but this is a day that honors the man that has been religiously caring for me through this entire ordeal, has lived with my mother for close to 2 months, orchestrated a blood drive to help save my life and has been holding down the fort financially without any inclination of when I will be able to return to the work place.

Seriously if all of that doesn't earn you a Hallmark, well than I don't know what the hell does.

First issue was checking our finances.  I mean trying to give a gift to tell someone thanks for being a fabulous and amazing father and husband is great.  But doing so and then bouncing a check because you've shorted funds in your checking account, um...yeah, I think that just has douchebaggery written all over it.

With budget in hand I was met with the next hurdle.  Transportation.  I am the mother of a 16 year old daughter who unfortunately doesn't have a permit or license.  CRAP....why do I procrastinate so much??  Ergh, if I had been more on the ball she'd have had her driving lessons last year and be a fully licensed driver by now.  Why didn't I have enough forethought that I may be stricken with a potentially fatal illness and need to go to Target last minute in order to score a gift for Jon?  I swear...I really am not a thoughtful individual.

Luckily I had another option.  My girl friend Stacy offered to be our driver.  Minutes after getting on the road the skies opened up and a torrential downpour engulfed us.  Immediately I felt bad for making her drive us, but she just smiled and laughed.  If you could have been a fly on the window of that car you may have pissed yourself at how we yelped and jumped with each crashing bolt of lightening. I'm sure to any passing cars that were able to see us got a bit of a laugh.  I love that when it comes to being crazy she is probably one of the few people that can measure up to my level.

Finally we made it to Target and made our way through the store in record time.  This was my first time being out in a store since my diagnosis.  I no longer have the energy to be up and about for very long so it was a get in, get the gift and get out before I'd have to rest.  Plus I'm not supposed to be around large groups of people.

Mission complete, with gifts in hand, we made it back out to the car and then we were homeward bound.  I wish I would have been up to visiting more or spending a bit more time at the store, but as first outings go....I think it went pretty good.  Guess we will see tomorrow if Jon thinks our efforts were worth it.

Home alone....

June 17, 2010

With my mom and Hannah gone the house has grown quieter by losing 2 of it's 5 human occupants.  The dogs of course are still as barky and yappy as all hell so you don't really have a long bout of silence unless it's bedtime and each pet has claimed a human to be near. 

I slept like a baby last night.  Part of it was from being back in my own bed but I'm giving 1/2 the credit to the ambien that the treating doctor prescribed for me upon discharge from the hospital.  When I had talked to both the Internal Medicine doctors and the Hematology/Oncology doctor that was handling my case they seemed perplexed at the idea that I had requested medication for sleep and anxiety at the time of my diagnosis but had been turned down by my oncologist. 

Hmmmmm.....lemme think on this for a sec.  Is anybody else screaming "get a new doctor" in their head too??  Just wondering.

So I was prescribed 5mg of ambien.  Such a teeny tiny pill....but oh how it makes this insomniac sleep. 

I woke up feeling pretty good.  My appetite wasn't the best but I managed to eat toast and have hot tea without throwing up.  Score!

Olivia is home with me today and she looks like she is about to go out of her mind.  She is not one who likes to sit around and being stuck with me who can't drive (due to intermittent numbness in my feet and left hand) to say that her summer, at this juncture, was boring would probably be an understatement.

Feeling horrible about keeping her here I told her she should call up a friend and see if anyone was free to do something.  I could see the worry in her eyes because just 30 minutes prior to saying this she had witnessed me trying to go into the kitchen and make myself something to eat and having to take a break every couple minutes.  As I made my way back to my bedroom I had to keep both arms out to brace myself along the hallway because I felt lightheaded. 

These are all things that occurred after returning home from my first hospital stay so it wasn't a shocking scene.  The difference between then and now was that I had my mother here for the "just in case" moments.  Just as I wanted a more normal summer for Hannah, hence me sending her to Georgia with my mother, I wanted the same for Olivia.  I don't want either one of my kids to be burdened by my diagnosis.  If things end in an unfavorable way, meaning I lose the battle with Leukemia and I die, I don't want my kids to look back at the summer of 2010 as the year they spent watching their mother get sick, fight like hell and then die.

I want there to be some kind of distraction for both of them so as to keep their interest elsewhere when times get tough.  When Olivia came back into my room and asked if there was any possible way that she could go out with a friend I immediately told her yes.  Then I realized that her going out would mean I would be alone in the house.

Home alone for the first time in close to 2 months.  Woot!

What to do?  What to do?

I thought about busting out my best Tom Cruise in Risky Business moves but realized I'd have to move some furniture that was out.  Then I contemplated running a hot bath, with bubbles, and taking a long soak while reading a book.  But I can't get my left arm wet (that is where the PICC line is located) and I don't have the attention span to read a book.  Seriously, I read a couple chapters and then have to go back and reread them because I've already forgotten what their plot lines were.

In the end I scooped up Penny and with hot tea in my other hand made my way back to my bedroom.  Once I got us both settled into bed I hit play on "The Hangover" in my DVR.  It may not be the most exciting way for me to spend a Thursday night, but at least I'm spending it laughing.

Chemo, cupcakes and friends....

June 11, 2010

Second bag of chemotherapy was hung at the break of dawn today.  So far my side effects after two infusions have been nearly non-existent.  The doctors say it is because they are giving me smaller doses that run over about 3 hours, with 12 hour breaks in between as opposed to the 24/7 flow that took place when I was diagnosed.  I, on the other hand, think that I'm not having a lot of side effects due in part to how proactive the doctors and nurses have been in regards to my concerns from the last go around.

Nausea and mouth sores were the thorn in my side when I had my induction therapy.  I was incredibly anxious about having to go through that again.  Part of it stemmed from the fact that the treating doctors at Tulane seemed to think it was close to impossible that someone could be that nauseated or in that much pain.  This time around it seems like the doctors are not only willing to listen to my fears and concerns, they are willing to act upon them.

What a friggin concept??  Actually listening to your patient.  Wow.

So about half an hour before they start running the cytarabine, which is the name of the medication used in my treatment, they hang a bag of zofran.  Then when they start the chemo they give me an IV dose of phenegran, which is another anti-nausea med.  Every 4 hours they come and give me anti-nausea medication, without me even having to ask. 

I'm so relieved that I'm not spending almost every waking hour with my head in a bucket and my hand wrapped around the nurse call button.  Another thing that is going in my favor is that I still have an appetite.  My new obsession seems to be chocolate chip muffins.  Yesterday when I was admitted my mom made a run down to the cafeteria to grab a bite to eat and asked if I would like anything.

Before I could even think about it I blurted out that I'd like a chocolate chip muffin.  I didn't think I'd get one, but it sounded delicious.  For me it seems that dealing with cancer is a little bit like pregnancy in the sense that I only seem satisfied in the hunger department if I am able to eat what I am craving.  Unfortunately some of the things I crave don't settle well with my stomach and thus ends in the same way these situations did when I was pregnant.  I crave something...obsessing about it until I actually have it on a plate in front of me.  I eat, savoring every bite and then a little while later I'm heaving my guts. 

So cruel.

When my mom came back from the cafeteria carrying a chocolate chip muffin in her hands as if she had found the Holy Grail, I began to bounce up and down on the bed.  Clapping my hands like a 2yr old.  I swear that this whole experience of dealing with a life threatening illness makes me adore the little things.

This morning when my mom came back to spend some time with me she made her way back down to the cafeteria and scored me some more chocolate chip muffins.  I told her that her dedication to keeping me swimming in muffins is heart warming and will definitely affect what kind of nursing home my sister and I will select for her when she's old and decrepit. She just laughed.

I love seeing my mom laugh.  Ugh...I'm gonna miss her when she leaves in a few days.

There wasn't much time for me to wallow in thoughts of how lost I'm gonna feel with her departure because I was getting a visit from two of my childhood friends.  Allison and Tammy, whom I've known since I was 3 years old were coming from out of state to throw Olivia's 16th birthday.  Allison is Olivia's godmother and the person that knows me better than most, so it overjoyed me to have her handling this milestone in my daughters life.  Especially since I can't physically be there.  Thank God for ativan or I may have had a mini nervous breakdown over the fact that I was missing the party.

Olivia's attitude of "I'd rather you miss this one and be around for all the rest" makes my heart swell with pride.  I don't know if she is just putting on a brave face for me but I am amazed at how well she is dealing with all of this.  As I sit chatting with Tammy and Allison about the party tomorrow, their drive out here and what they have been up to I feel a strange pang of jealousy that they will be able to be with my family on such an special day.

As quickly as it came I immediately attempt to stuff that feeling away and focus on reminiscing with my friends.  I can't believe we've known one another for 30 years.  That's longer than most people stay married!!  Grant it Tammy and I haven't remained close like Allison and I have, but if you'd just been a passerby of my room as we sat and talked, you'd never think we missed a day together.

It was slowly creeping towards dinner time and the sun was starting to set when Allison announced that they were gonna head out so they could eat and get some rest for the big day tomorrow.  That pang came back full force as I wished that I could just unhook the IV, throw on my clothes and go with them.  Instead I thanked them both for coming to see me and all they are about to do tomorrow and give them the name of a few restaurants that would be a good place to have dinner.

Once they leave and my room is all quiet again I close my eyes and try to shift my focus from the things that I am missing out on to getting through this round of treatment.  A  few minutes later one of my nurses comes in and gives me my dose of pain medication and I drift off to sleep.

June 12, 2010

It looks like a beautiful day outside the window of my hospital room.  The sun is out and there seem to be very little clouds.  I am hopeful that this means Olivia's party will go off without a hitch.  I throw up a little prayer that no one gets hurt, everyone has a good time and that they don't get any bad weather.

The inflatable water slide was delivered last night and the kids wasted no time in breaking it in.  I've been getting text updates on how things are going and I will be getting a full fledged report, with pictures, later on this evening when Allison and Tammy come to visit.

After making an appearance at the party, my mom made her way over to sit with me.  I'm trying very hard not to think about the fact that in less than 24 hours she will be going back to Georgia and taking Hannah with her.  I know that Hannah is looking forward to not having everyday consumed with her mother sick with cancer.  Summers spent with my parents are one of the highlights of Hannah's year and although I'd love to have my mom stay I know that achieving some sense of normal routine for the kids, especially Hannah, is important. 

June 13, 2010

Ugh...its Sunday.  The day when both my mom and Hannah leave as well as my two friends Allison and Tammy.  Every minute since waking this morning at a little after 6am (seriously there is NO sleep in the hospital) I have felt sad at how I won't just be able to call my mom and she'll come see me in the hospital or when I am at home I will peek into Hannah's room (where my mom resided for the close to 2 months that she has been here) and just chat with her or having her come lay with me in my bed.

I've been so spoiled having her around.  I know that I don't have to worry about my kids, the dogs or my house with her here.  I've been told by the doctors that when I am discharged following this treatment that I may be weaker than I was following the last treatment.  The only scary thing about that fact is that after my treatment the first time I was in hospital for another 20 days which allowed my counts to climb to a safe level which wouldn't leave me as susceptible to getting sick and I'd have a decent amount of energy because it.  This time I will be sent home in what is called a neutropenic state and I will be momless. Jon has to keep working or else we will lose everything and while my MIL is a huge help to us in getting me to and from appointments and spending time with the kids, she doesn't live in our house (nor do I think she wants to...which is ok by me).

And today I wouldn't just be losing my mom..sob.  There would be Hannah leaving too..double sob.  The final blow would be Allison and Tammy's departure..full on body sob!

Thankfully my time to say goodbye to my mom and Hannah was really short and quick.  Kind of like pulling a bandaid off really fast to make it hurt less.  They had a flight to catch and the hospital was on the way.  I had to go down to the lobby to kiss Hannah goodbye because she is under the age limit for being able to come up to my room.  My mom and I teared up but Hannah seemed to just want to get out of there and on with the rest of her summer plans.  Dang kids!

Allison and Tammy didn't stop by before hitting the road.  I would have liked to have another opportunity to thank them both and spend a little time with them.  Probably better that they didn't since I was emotional enough already dealing with the mom and daughter leaving.

One of my favorite nurses (because there are A LOT on this stay) Nina went to a local bakery and got a bunch of cupcakes.  She brought me the most gorgeous and delicious red velvet cupcake to drown my sorrows.  She said that sometimes you just need to have a "fat girl party".  I had to know what the story to that comment was because she was no where near being fat or large in any sense of the word.  She then divulged that she used to be overweight and had gastric bypass surgery.  While she can't eat like she used to and wouldn't want to return to, she does allow herself a "fat girl party" every once in a while which means she'll eat a whole cupcake or huge piece of cake.  I didn't care what she called it...that cupcake was amazing and helped heal my sorrows.

After dropping my mom and Hannah at the airport Jon came back to spend a little time with me.  These visits are rare because he works so much and the drive to and from the hospital is a lot to take on after putting in a 10+ hour work day.  Then there is the matter of taking care of the kids and keeping up with things at the house.  By the time it is all said and done there just aren't enough hours in the day to fit in everything that either of us would like to have happen.

So getting a visit, that included ice cream and Chili's take out, was just what we both needed.  Jon stayed until the nurse came to give me my sleep medication.  Hello Ambien.  Good night Jon!

June 14, 2010

Day 5 of being in the hospital and I am still managing to be able to smile.  I'm thinking its a good sign.  Side effects have been so mild on this go around.  I hope this is how all of my remaining treatments will go.  I think a large amount of credit goes to the doctors and nurses so I may just need to kidnap all of them and take them home with me to ensure that I get the exact staff on the next stay.

Good thing my MIL cleaned up and organized our garage cause I'm pretty sure that is where I will have to stash them all. 

June 15, 2010

Rough night last night.  I couldn't sleep to save my life.  The sleep medication did nothing and the pain on my left side from my unruly spleen was breaking all sorts of pain records.  At one point today I got up to use the restroom and actually had to use the nurse call button that is located next to the toilet.  I had gone in for a routine pee session and the next thing I know I'm hunched over in excruciating pain, with the room spinning and me feeling like I was gonna pass out.

Good times. 

Nothing more embarrassing than having to be scooped up off the hospital bathroom floor with your bare ass in the air.  Lucky for me I was able to get my underwear up before I almost went ass over teacup, but still the thought was enough to make me want to limit my fluid intake, thus lessening the possibility of this situation repeating itself again.

June 16, 2010

I was supposed to get discharged yesterday afternoon when my last bag of chemo finished, but I ended up needing 2 units of blood.  The transfusion ran too late into the evening for the doctors to want me released.  I actually slept pretty good thankfully and now I'm ready to get up on out of here.  I've already packed up my stuff and changed into my clothing.  Feels nice to have something covering my ass again.

It's going to be so weird at home without my mother.  I'm a little worried about how things will go with no one to look after me during the day.  I know that I'm not a complete invalid by any standards but I still feel so weak all of the time and it makes both myself and Jon feel better when there is someone here to check to see that I am breathing, eating, sleeping (but not comatose) and generally just functioning.

I guess all this responsibility will fall onto the very capable shoulders of my sweet Penny dog.....

I TOTALLY think she can handle it.  However if you don't see a post from me in the next few weeks please send help.  Ya know...just in case she can't handle my day to day care.

Friday, June 18, 2010

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 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.

Wednesday, June 9, 2010

Give and take...

Sometimes when I feel completely stressed by the weight of this diagnosis and the mounting cost to essentially give me the possibility of a long and healthy life, my only means of escape is to pretend that I'm not REALLY a cancer patient, I just play one in the parallel version of my life.  Of course that type of mental vacation only works when I'm not heaving my guts into a plastic bin, light headed from any number of things, anxious at upcoming test or treatment, having trouble sleeping and/or sitting at one of my numerous doctor's appointments. 

These little mental outings would probably work better if I was on Xanax or Ativan but once again we must remind ourselves that I have been given the Oncologist that is hell bent on me remembering every gut wrenching turn of this whole insane ride.  Yep, I'm blessed like that...don't be jealous.

Since being home I've allowed myself to slip into the "normalcy" mode where I am delusional enough to believe that I am in control of my life and the things that happen in and around it.  Again, these moments would be less painful to rebound from if  I had a medicinal parachute, so to speak.  That way I could be let down gently instead of plummeting to the ground.  Apparently I got a little overzealous because I assumed that since I was feeling really good this week, which was a first since being discharged from Tulane, that I would be able to make plans.  And then I was stupid enough to believe that I would be able to keep them.

Yesterday I woke with a slight fever so I immediately had to scrap plans to head over to my best friend Mar's office in order to thank her boss and other city workers for their time and blood donations.  It's really important to me that people know just how much both my family and especially me are so humbled and grateful by the outpouring of support. 

Today was the first day of the fundraiser at a Le Cafe de Bon Temps and I was looking forward to having lunch there with my mother and two daughters as well as having dinner tomorrow with my husband and some friends.  The owner of the restaurant had agreed to take 10% of revenue from lunch and dinner for two days and donate it to assist with the rising cost of treatment.  On top of those plans, my very best friend since childhood would be making a 6 hour drive to come and throw my oldest daughters 16th birthday party on Saturday.  Then on Sunday my mom, who has been my rock to this point, would be flying back to Georgia and taking my youngest daughter with her to spend the summer.

I was excited that more of my days housed time with family and friends as opposed to clinic and doctor's visits.

I had been feeling so horrible when my dad and sister came to visit over Memorial Day weekend that I was looking forward to having visitors and actually being able to be up and about.  Everything was going great until I got a phone call from my doctor on Tuesday afternoon.  I was already a little emotional before getting the call because of having to postpone my visit to see my friend and her co-workers.  So when I missed the incoming call and was left to decipher what the message said it was almost enough to put a girl over the edge. 

Then I spent another hour trying to contact my doctor back so I could get further information.  While I do think that my doctor is good and thorough, I am hung up on two things....her inability to speak clearly to me and the fact that she is so against any type sedatives or pain medication.  She is out of her ever loving mind if she thinks I am going to just bite the bullet through all of this. 

I finally managed to reach her and was told the results of my latest bone marrow biopsy were in and instead of just telling me what the results were she was insistent that I come in to the office.

She had scheduled an appointment for me at 8:30 a.m. on Wednesday.  She kept repeating Wednesday at 8:30 a.m. like I was either deaf or a complete idiot.  I almost had to stop myself from saying, "it's on Wednesday the day after today but before the next day?  And it's at 8:30 a.m., like morning time, not to be confused with night time?", but I figured that would only frustrate me more and the humor would be completely lost on this woman.

I was more than a little pissed that she wouldn't just tell me what the results were.  I asked her if I had to have labs drawn or anything of that nature that would necessitate me actually physically having to go to the office, to which she answered no. This is all fine and great if a simple doctors visit to get test results meant just driving to the other side of town and popping in to hear the results.  All of which, in the world of private health care takes all of maybe an hour.  Unfortunately, for myself, my mother...our butts that have to sit in uncomfortable chairs and our nerves that are frayed to the point of possibly breaking, our day was going to start early and take several hours.

I tried to think happy thoughts but trying to pretend that I wasn't a the cancer patient whose life and whose family's life has been turned upside down, was proving a bit more difficult today.  Sadly, every time I think we are getting the pieces back into some semblance of order the disease rears it's ugly head and reminds me that both it and my health care team are the one pulling all the strings.

I'd like to say that I waited patiently in the clinic to be called, but if God is trying to teach me the lesson of patience he needs to hurry the fuck up.  It is completely unnerving when you are told that there are test results that you know can have a bearing on your your actual physical life of being in existence on this planet and then you are told, "I'd rather discuss these results in person"...yeah, the I'M FREAKING OUT factor goes up about a million notches.

Finally after 4 1/2 hours of waiting....seriously people if anyone reading this in uninsured, you have been private health care coverage equals you will sit and wait until the end of eternity.  Just a little health care tip from me to you...your welcome America.  So after we had put in our time I was rewarded with the news that my bone marrow had come back clean. 

And now I can release the breath I had been holding since yesterday when getting the phone call. 

Then the doctor comes at me with the news that since my results were clean of any blasts which are the leukemia cells I would need to start the next phase of chemo therapy.  GOOD NEWS!

She went on to tell me that since I had been responding so well to the initial round of chemo that I'd had back at the time of my diagnosis, there was a possibility that we were only looking at another 5 rounds of chemo, one of which would be coming up really soon, in order to get me into full remission.   GREAT NEWS!

I thought this all sounded like AMAZING news...until she told me I would be expected to be admitted on Thursday.  Ya know like the day after TODAY! 

In that split second I felt all the positive vibes of having plans and things to look forward to just seep right out of me.  It became clear once again that I am not in the driver seat at all times when it comes to battling this disease.  I am going to have times where I am at it's mercy or the mercy of the drugs used to rid my body of it. 

While my heart breaks at all the little things I will miss....

- Celebrating Olivia's 16th birthday with family and friends.
- Being in my own home in my own bed.
- Going to dinner with family and friends to see and thank those who are taking time out of their life and money out of their own pockets  in order to help my family.

...I know that my priority needs to be treatment and getting to remission.  Achieving that will hopefully leave me another few decades to make up for the months spent focused on my new arch enemy...leukemia! 

As long as this cancer understands that I will give it time out of my life but NOT my life in general then we should have no problems.  I can give it time.  I can even give it the itty bitty hairs that have started to grown back on my once bald head.  It can have almost all my energy and some of my sanity (although there isn't much of either) but it cannot have my spirit or my existence.  That's just where I draw the line at the give and take.

Monday, June 7, 2010

It's the little things....

May 28, 2010

Today would be day #3 that we, my mother and I, have had to make the journey into New Orleans.  The appointment this time would be to have my PICC line flushed and the bandaging changed.  We arrived early in order to register and found that our wait was fairly short.

After taking the elevator up to the 8th floor and getting slightly lost we came to the desk of  the oncology nurses.  I immediately knew that I was gonna like my visits with these ladies the most.  We were greeted with smiles and the most jovial of attitudes.  It put both my mother and I at ease.

Another thing that was making me so happy today was the fact that my father, sister and my sisters boyfriend had made the journey from Georgia's east coast to come and surprise me with a visit over the Memorial Day weekend.  All I cared about was getting through this appointment and getting home to spend time with my family.  It was the first time that my whole family (with the greatly missed exception of my oldest daughter who was off on a visit with her biological father for two weeks).

I was weighed in and then sent to a room where the nurse came and flushed each of the lines in my PICC.  She made sure there were no clogs and that she could get a good blood return for when they needed to draw labs.  This made me think of the horrendous experience I had during the first clinic appointment when I passed out when the technician said that I'd have to be stuck in order to give blood.  I must have shuddered a bit because the nurse, Theresa, immediately softened her touch and asked if she had hurt me.

I laughed and said,"nope...just wondering why the nurses across the street at the clinic can't use my PICC to draw my labs...cause I'm a fainter".  Theresa looked at me and said, "oh hun you better tell them girls to get a nurse that can pull from your PICC cause you don't need to get stuck".  I wanted to hug her or put her in my pocket.  Anyone that doesn't want to stick me with a needle or supports me not wanting to get stuck with a needle is definitely in my newly formed "people that I've met since being diagnosed with cancer circle of friends".

The rest of the appointment went smoothly and as we were set to leave Theresa made sure we took some information on my diagnosis and then pulled out a bag that contained hats that had been crocheted by volunteers.  She put the bag in front of me and looked up at my bald head and said, "you should pick one because your head might get cold".  I laughed a little because the temperature outside was making it's way into the 90's.  But I smiled and sorted through the bag finding one that seemed perfect.

I was struck by how overwhelmed I felt at this gesture.  I thanked them and told them I would see them next week and for once I actually found myself looking forward to an appointment that had to do with my illness.

To sedate or not to sedate?? Yeah, I totally have the meanest doctor EVER!

May 27, 2010

As I was beginning to drift off into a much deserved sleep following yesterdays whirlwind first day of clinic visits my cell phone began to ring.  I had almost, without much thinking, moved to hit the "ignore" call button on my Crackberry but saw that it was a (504) number and that made me think it may be the clinic.  I was awaiting the results of my counts because my doctor didn't have them when I had finally made it through the marathon wait to see her.

I suspected it had something to do with the fact that the time between when the blood was drawn and when I made it into a room to actually see my doctor, in my mind, was not enough time to run the lab work and get the results.  But who am I to say that their whole system was broken?

I'm just the lowly cancer patient who spent the better part of the day being bounced from room to room and went home with no clue as to what was to happen next in regards to my treatment.  All I was armed with was an appointment to have my PICC line flushed and dressing changed two days later, as well as a follow up appointment to see the oncologist on June 16th.

I had gone from being checked, poked, medicated and monitored 24/7 for 28 days and now all I had were two appointments in the next couple weeks.  It was a little unnerving.  If I was looking for a " you're in remission ma'am" type of experience I was going to be very let down.  I was quickly learning that patience was a virtue that I really needed to master in order to make it through all of this.

I picked up the phone and was greeted by the familiar and broken English of my doctor.  Great, not only did I have to get the doctor that feels sleeping medication is a sure sign that your gonna off yourself, I was also blessed with one that I had to have repeat things and at times spell the word in question.

Thankfully I got the first part of the news in almost perfect dialect therefore allowing me to learn that my counts looked great.  The problem came with the following part.

It was almost like a verbal word game.

She would say the phrase and then I would try to interpret what it was that she was saying.  This may not have been so frustrating if she wasn't talking about...oh, I don't life!  The few words that I could pick up were "biopsy", "urgent", "don't be late" and "tomorrow".

Everything else like "where", "when", "who would be performing the procedure" were much, much, MUCH harder to understand.  It took an additional 10 minutes to learn that she wanted me to come for a bone marrow biopsy on the 27th.

Tomorrow.  Got it.

I would need to be there by 12p.  Got it.

The doctor that would be performing the test was a colleague of  hers and would be doing it before going out of town for the Memorial Day weekend. Took a few tries...but got it.

It was imperative to have the test done now so we could see if my marrow has rebounded in order to start the next phase of treatment. A bit more difficult and admittedly not sure what all the rush was about for this doctor to do the test before he left on vacation especially when my counts were good...but she's the doctor and I'm the patient, it.

The last part proved to be the hardest which was what part of the hospital I needed to report to for the procedure.

Me:  Where do I need to report for the test?

Doctor:  Fuhst flo

Me:  Ok..on the first floor?

Doctor:  Uh..yes.

Me:  What is the name of the department?  Is it oncology?

Doctor:  No.  You go to fuhst flo...(and this is where the game begins because at first listen I swore she said the following) and BDT.

Me:  Ok.  First floor...and was that BDT, like B for boy, D for dog and T for Tom?

Doctor:  Ugh no.  You go to fuhst flo...

Me:  (slightly peeved that she is insistent on repeating the one part of the equation that I already understand, but trying to remain calm thinking that surely since I spelled it out with words that represented the letters in question that she would follow my lead and becoming increasingly aware of the fact that she sort of sounded like the Chinese woman saying "and then" on Dude Where's My Car..this may not end well)

Doctor: Uh...fuhst flo..DDT.

Me:  Ok...let me just make sure it's D for dog, D for dog and T for Tom??

Doctor:  Fuhst flo...

Oh DEAR GOD female Jackie Chan...I got that part....what I need to know now is the last part.  The actual department that I report to.

Doctor:  Its D as David, T as tea and D as David. 

Ding, ding, ding...we have a winner!! 

I thanked her for calling me and getting me in for the biopsy so quickly.  I then asked if there was anything I needed to do in order to prepare for the procedure since the last two biopsies I had while inpatient at Tulane, I didn't know if there was a different set of rules for an outpatient procedure.  She assured me that I would be in an out in a few hours and didn't give me any other instructions.

We arrived at University Hospital about an hour before the procedure in order to register.  I was more nervous about being late for the actual biopsy appointment than I was having the procedure itself done because my doctor had been so adamant that this colleague would be leaving to go out of town.  It almost seemed like I was playing beat the clock because the waiting system that had plagued us at the clinic was in full glory just across the street at the hospital.

My mom kept reassuring me that things would be fine and soon we were called to register.  Once again we came face to face with the reminder that I needed to find out my Medicaid status or unearth a money tree because...tick, tock, tick, tock...we were now at 9 days and counting before we would start getting hit with my clinic and now University Hospitals bills for treatment.  Way to suck the wind out of my sails people.

We finished registering.  I got my orders and made my way to where I would be having the biopsy.

The room was freezing, but the nurses were so nice.  I undressed and slipped on the hospital gown as instructed and attempted to wrap my now shivering legs in the thread bare sheet that was provided.  I heard the nurse call my name from the other side of the curtain and then ask if I was changed.  I advised her that I was and then she asked if I would like a blanket.  I had to stop my teeth from chattering long enough to say yes.

As she pulled back the curtain and covered me with a blanket she asked me if I had this procedure done before.  I advised her that this would be my third biopsy.  Her next question was one that struck me as odd.

Nurse:  Are you having sedation for your procedure?

Me:  Ummm.  Yes.  I mean...ummm, I had sedation for the last two, so I would assume I am.

Nurse:  Oh.  Hmmm.  Okay.  Well the doctor should be with you shortly.  (and with that she pulls the curtain closed)

I sit on the other side pondering what the hesitation in her voice meant but don't have to wait long because I hear the nurse talking to another nurse about how "this patient thinks she is having sedation for her biopsy but there are no orders written".  They kept talking about it as if they had shut the door on a cinder block room where I was inside and unable to hear a word of what they were discussing.  When in fact I could hear every word, every sigh and every squeak of their shoes as they walked away.

I wanted to yell out...I can hear you!  But figured that agitating anyone that will be sticking a needle anywhere close to my body was probably not the best idea. 

The next time the curtain opened I half expected to see the whispering nurse but instead met the face of the two doctors that would be doing the procedure.  While I was trying not to allow myself to be anxious over the fact that the nurse was under the impression that I had no sedation orders for this test I became increasingly nervous over the fact that the only thing these doctors had to go on in regards to my care was a sheet of paper with the order to do the biopsy and the type of leukemia I had been diagnosed with.

Thankfully, for me and my health, I am a good listener and note taker because every question with the exception of what type of chemotherapy I had while at Tulane was able to be answered by either memory or my calendar that I carry with me.  Being led through a question and answer session before being stuck in the hip with something resembling a hollow icepick may unnerve some people and I was....honestly very much in that some people category.

The doctor could read my hesitation and anxiety like a bold faced book with pictures and quickly dug into his scrub pocket to find his cell phone so that he could call my oncologist.  After his second attempt he got her on the phone.  His approach was so matter of fact that part of me wanted him to put her on speaker phone so I could hear her response to each of his questions.  Especially when he fired off questions and phrases like "I'm gonna need a little more history other than what is on this piece of paper" and my favorite "you expect me to drive a needle into YOUR patients hip while she is fully conscious and had nothing more than lidocaine to dull the pain".

He then asked me if I would prefer to have the procedure with or without sedation?  I told him that I'd prefer to have the sedation.

He asked me if I understood that I would still be conscious and awake, just like the previous two?  I told him that I did.

He then asked me if I would mind waiting until Tuesday, June 1st to have it done because my doctor, in ALL of her infinite oncological (totally my made up word) wisdom, had failed to A) write sedation orders and B) while she could authorize it over the phone, which sounded like a brilliant plan to me, she hadn't told me to not eat or drink anything after midnight so that I wouldn't possibly choke and die while mildly sedated. 

So lets options are to do the biopsy now, white knuckling it with a doctor that doesn't want to do it without sedation therefore increasing my own anxiety at the fact that he is now possibly nervous while driving a needle and other instrument into my hip bone -OR- I can wait a few extra days and have the test done while I'm relaxed from medication and the doctor is relaxed due to the fact that I am relaxed?'s a no brainer!  What time you want me here on Tuesday?

I thanked the doctor for his time and of course apologized because I felt bad over the fact that I felt as though he wasted his time with all this calling of my doctor crap.  I mean seriously...what kind of doctor sends someone to have this type of procedure without thinking about their comfort??  Ugh....

The doctors left and closed the curtain behind them.  I scrambled to get dressed and waited for the nurse that would come and discharge me.  Another few minutes and I was making my way out to find my mom.  She seemed surprised to see me so soon and when I told her why I was done so quickly her surprise turned to the same disbelief that I had.

I contemplated just jabbing my doctor randomly the next time I see her and then later asking her if she would have preferred to be sedated.  I was pretty sure the humor would be lost on her and that i may possibly delay my treatment and result in criminal charges, so I quickly filed that thought under "not right now but maybe in the near future".

I tried not to let it bother me too much.  Being frustrated takes too much of my energy and that is something that is a precious commodity nowadays.  I decided instead to be grateful for the fact that at least our entire day hadn't been consumed by this appointment and that the conclusion would find me home resting with my family.

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.