A Letter From Post-Chemo Nichelle to Pre-Chemo Nichelle

Dear Pre-Chemo Nichelle-

    I know that you are tired of chemo.  Having to go have a PICC line placed at Lourdes days before the first round of Rituxan.  Taking 1-2 days off of work.  Driving almost 4 hours over the pass just to go sit alone in a hospital room hooked up to an IV for 7 hours.  The stupid steroids (pre-meds) make you edgy and snappy towards everyone.  You're technically considered being at an appointment so you can't order food and are stuck with whatever you grab on your way out the door (typically some super healthy, low calorie, carb free, protein packed granola bar from Mom's pantry).  There's no walking around except to the bathroom and back because the med is frightening and you sporadically have reactions.  If you end up with a nurse you haven't had before he/she almost always thinks they're the special one who will be able to push the rate up to 400mL without a reaction occurring when you know your max rate is 350mL.  You'll get stuck in rush hour traffic and it will take you an hour and a half to drive the typically ten minute drive back to Mom's.  After dinner with Mom and Rick you'll drive the 4 hours back over the pass home, arriving around midnight as you can't leave until after the rock blasting or you'll get stuck sitting on the highway for an hour.

   You'll spend the next two weeks having hot flashes and sporadic roid rage while fighting crazy exhaustion and trying to keep your PICC line properly dressed and infection free.  Then, at that two week mark, you'll get to do it all over again to finish out the 'round' of treatment.  I know that this whole thing isn't a walk in the park, but it actually is immensely helpful.

Right now you're dragging 24/7.  You are absolutely exhausted all the time.  You can't get enough caffeine.  You have to sit down about half a dozen times per shower followed by at least twenty minutes of recovery post shower in order to prevent passing out.  You're frequently dizzy and light headed.  You want to fall asleep by 8pm every night.  I know you can't remember right now what it feels like to have energy and physical drive and simply feel normal, but that's how you feel about two weeks after the last session in each round of your chemo.  You can take an entire shower standing up.  You can take Buddy on walks and chase children.  You easily hit your Fit Bit goal every single day.  You are productive and can multi-task like crazy.  You almost feel healthy again.

I know that you're not excited about the upcoming few weeks and you're just so tired of it all, but it will help you so much and it will really put the pep back in your step.  You'll have more energy than you remember having in months.  Look at it as a fun road trip, get a slice of cheesecake from The Cheesecake Factory, buy a new Coach purse from the outlet, spend the drives practicing your mad rapping skills with your BFF Luda, and go get your life saving elixir at your second home, Virginia Mason.

Love,

Post-Chemo Nichelle

"Draw the Line"

At Virginia Mason getting another round of Rituxan right now.  We've played around with the timing and dosage a bit and I finally can do my chemo as an outpatient!  I get double the dose at a time and then I only have to do it twice every six months instead of four times every six months.  Last time (end of May/start of June) we got it done in 7 hours at a max rate of 400mL/h by increasing by 50mL/h every 30-60 minutes with no adverse reactions and just my normal I pre-meds of solumedrol (steroids), Benadryl, and Tylenol.  Today I had a reaction once we hit 250mL/h so that will likely be the max rate of the day.  Thankfully my reactions come much slower and less intense than my initial reaction.  I just get very dizzy and light headed, and then I feel like an elephant is sitting on my chest and I breathing becomes very difficult.  At that point my nurse stops my infusion, gets me on Oxygen, and pushes more solumedrol and Benadryl.  My body starts to calm down and over the next half hour or so I have less and less trouble breathing and I start to get a bit of color back in my face.

During my chemo infusion I alternate between being incredibly sleepy, and incredibly wide awake!!!  Sometimes the Benadryl makes me want to doze, other times the steroids have me wired!  When I used to do inpatient overnight stays I could never sleep because of how much energy the steroids gave me.  We couldn't even find a sleeping aid that would keep me from trying to coax all of the nurses into playing jump rope in the hall with my IV tubing.  No...really...one night I spent almost an hour trying to convince them to do that with me...

Every infusion location is different.  The one at Virginia Mason has both shared or private "suites".  I always am given a private one because my infusions last so long.  This time I have a window in my "suite" AND my chair isn't broken!!!  I have a tiny TV but I always bring my laptop and Netflix because when I say tiny, I really mean tiny!!  I'm not allowed to go walk around or cause trouble because I do have reactions and apparently chemo is a pretty intense drug...who knew!  When dealing with it the nurses have specific protocol and equipment that helps protect them from it.  At some places they even make you flush the toilet twice after you urinate if you're on chemo.  It's very strange to see people be so extremely careful to not so much as touch this drug, yet I'm sitting here with an IV of it being pumped into me!

"Fly Away From Here"

It's been far too long since I've written here!  I'm scared I'm going to forget my story (or more pieces of it) if I don't put it all down soon so let's play some catch up!!

I believe that the last post I wrote about my hospital stay was about Friday, February 15th when I was admitted into VM.  Pain. That night I was in SO much pain.  And had lost all use of my hands.  I remember it taking everything in me to enjoy a sucker that Robbie and Diana gave to me.  I couldn't re-position myself or roll or turn and needed nursing assistance every time I desired to move.  I just cried and cried and cried.

The next morning I was so excited to see Mom and Mama Jo.  I was in severe pain.  I was frustrated as the IV wasn't keeping and nobody could place one.  It was eventually decided that day that I needed a PICC line.  I was terrified.  That was a possibility at Kadlec but it didn't happen. I knew that it was a sterile procedure involving a scalpel and had no desire to be on the receiving end of that whatsoever.  However, by that time I had no other choice.  I finally agreed to do it so long as someone would hold my hand throughout the entire thing.  That's a big thing for me...I can do a lot if someone literally holds my hand through it.  They agreed and said that even if my Mom couldn't go in with me to hold my hand, they'd find someone who could.

I remember closing my eyes in my room as they came to get me for the procedure, holding Mom's hand the entire way there, and finding out that she had to wait outside and a nurse would take over the hand holding.  I didn't open my eyes once.  Not even a sliver.  I was fully convinced that if I didn't see anything I could't be terrified?  Who knows exactly why, but I literally refused to open my eyes again until I was safe back up in my room.  It really wasn't nearly as horrible as I thought that it would be and I made conversation with the dr (or tech?) and nurse as I held her hand sooo tightly.  The PICC line ended up being such a life saver for me.  My IVs kept dislodging and I'm a really difficult stick to begin with so to have a semi-permanent one placed that could both draw blood and accept all of my meds was such a huge blessing.

I know (thanks to Facebook) that Mom and Mama Jo had gone out and gotten me Cheesecake Factory for dinner that night!  That's the best part about being in a Seattle hospital...the Cheesecake Factory!!  Also, according to my Facebook page, they still didn't know what the rash was and the main focus of Saturday was to see if I could use my hands again.  By this point the pain was finally somewhat under control.  The crying because of it was cut back significantly.  I know that I was on two different doses and schedules of IV Dilaudid including an hourly PRN bolus that I was needing every hour, on the hour.  I was also on a quick release pain pill and a long lasting pain pill.  And, of course, a ton of steroids.  And about a million other random meds that were necessary at that time.  If there was ever any doubt that I was high as a kite from the pain meds, the following Facebook status that I posted that afternoon will take care of that: "Mom (DDeby Baketel Sutter, Mama JJonelle and my lovely AAmber Carriganhave been with me most of the time and have better updates than I can even piece together so feel free to use them for accurate health updates. If you'd like to hear whining about chocolate, pain, or on various aspects ofunicorns" High as a kite!

"Same Old Song and Dance"

When I was initially diagnosed while in Virginia Mason back in February it was the Rituxan infusion that pulled me out of my flare.  (I know that I haven't gotten to that yet in my chronicling of the story so this is gonna be a bit of a spoiler alert to anyone who is following or cares!)  The only approved meds to treat my illness are various forms of chemotherapy paired with heavy doses of steroids.  I was already on both of those things for the initial two illnesses that I was diagnosed with back in August and I absolutely hated them.  My dr did a bunch of research, including calling up the vasculitis clinic in Boston (I believe it's in Boston?) and decided that I needed to be put on the IV infusion therapy called Rituxan immediately.  It was a very aggressive approach, but my illness was rapidly progressing.  I didn't know it at the time, but I now know that if she didn't get it under control quickly my lungs and/or heart would be attacked next

Everyone's protocol is slightly different, but because my body had a reaction at the beginning of the initial dose, my infusions last 12-14 hours.  I have to have four of them spaced out a week apart, every six months.  I'm not in remission and I may never be, but my disease is being "kept quiet" with these infusions.  It's time for more infusions and my body is telling me so.  The exhaustion, aches, pains...it needs the Rituxan.  My dr is going to try to do the infusions a little differently this time to make things easier for me.  She is trying to do two infusions at once, but keep the rate the same so I don't react.  The plan is to have one 24-30 hour infusion done as an inpatient, then two weeks later have another one.  If we do that every six months we are hopeful that we can keep the disease "quiet"!

A few things about the Rituxan.  First of all, when does as four separate infusions they cost about $25,000 each.  That is $200,000 worth of medicine I am having pumped into my blood yearly just to survive.  Absolutely insane.  I'm very hopeful that insurance will continue to cover the majority of it...I'm not sure what to do if that stops.  Anyway, another fun fact about Rituxan is that apparently it's a pretty scary drug.  I say this because all of my drs continually act this way and tell me so.  The first two infusions that I had in February were done inpatient at Virginia Mason.  The last two were done outpatient at Yakima Valley Memorial.  As this is something I have to endure regularly for years to come, I've explained to my dr how much easier it would be for me if I could have them done locally in Tri-Cities.  (She is based in Seattle, four hours away at Virginia Mason.)  She said that if I could find a local dr who would agree to work with her to oversee my local care, that is a possibility.  I didn't realize how difficult that would prove to be.

Long story, short is that after two drs told me that they would't oversee local treatment as it's too risky, I finally found a local Rheumatologist named Dr. Peacock who has agreed to oversee it for now!!  He wants me to have my first treatment (the one this week) up at Virginia Mason because if I do have a reaction again, it would be during this one, and then the one in two weeks he will follow her exact protocol and oversee the infusion done inpatient at a local hospital!  I'm so very excited!  I love Dr. Stone in Seattle and she has gone out of her way multiple times for me and I will continue to see her as my primary Rheumatologist, but if Dr. Peacock will see me locally and for emergencies, I would be so appreciative!!  Hopefully everything goes as planned and this will work out.  I would love to have these infusions done locally so I can cut out the driving and then maybe I can have a visitor or two pop in and out so I will have less boring stays!!

Ohhh, the all too familiar face of an IV drip machine...I am getting myself well trained at silencing these at the various WA state hospitals!

"What it Takes"

There are different types of "exhausted".  There's "typical exhausted" the type of exhausted one gets when they chase around multiple children all day, pull an all nighter, or exercise excessively...and then there's "extremely exhausted" you might experience if you attempt to do all three aforementioned activities.  And then there's one type of "exhausted" that healthy people just can't understand.  The "chronic exhaustion" is something that most people with chronic illnesses, particularly autoimmune related, can all describe to you as far above and beyond "typical exhaustion".

I'm not trying to downplay typical exhaustion.  Exhaustion of any type is not fun!  I'm more taking a moment to vent and try to explain a bit about chronic exhaustion that is associated with an illness.  You know that type of exhaustion that your body feels when you have the flu?  The type that makes you physically hurt all over?  That winds you while walking from one room to another?  That makes you so tired that even thinking about moving stresses you out?  That.  That is the type of exhaustion that is associated with my illness.  (It is associated with many various chronic illnesses, but for the purpose of this post, from here on I will only be referring to myself and my illness so I don't misspeak for anyone else.)

I have anti-synthetase syndrome associated with the PL12 antibody (ASS...I love that I have "ASS" disease!!  LOL!), myositis, and leukocytoclastic vasculitis (LCV).  All three have 'extreme exhaustion' associated with them.  For me, some days are much better than others.  Today was a rough day.  It began by having a rough night of sleeping due to pain and who knows what else.  After a combined total of about four hours of sleep I was up for the rest of the day...but not at all productive.  Everything that I did today hurt.  All of my joints.  All of my muscles.  I showered and cleaned the microwave...massive successes in my book for the day.

Also, I have discovered that when I eat whole, raw, and organic foods I can absolutely feel a difference in my body.  Staying busy helps, as does trying to stay as stress free as possible.  The flip side of all of that is that eating better typically requires more money and energy, staying busy requires energy, and relieving stress...well...I don't do too poorly in that area.  :)

Looove my new juicing habit!!  :) 

"I'm Down"

Friday, February 15th.  My appt with Dr. Stone at Virginia Mason was at 2pm.  By 3pm I had been lifted onto a gurney and was being taken to the dermatology section of the hospital for biopsies.  I loathe biopsies.  At that point I had only had one on my chest and, as you may remember, I literally passed out during the removal of ONE stitch.  Anyway, I didn't have a choice and wasn't really informed of too much.  All that I knew at that point was that I was going to be admitted into Virginia Mason, that I was very sick, and that I was in so much pain I couldn't even move myself.

The worst pain that I remember feeling was during the three biopsies that were done on the outside of my left calf.  I remember laying on the table and looking at the white ceiling and bright lights.  I remember that Mom and Mama Jo were at opposite sides of my head holding my hands.  I remember that there were multiple people in the room and that one woman was instructing another woman how to do the biopsies.  I am 100% positive that I felt everything.  They were punch biopsies and each one made me scream and writhe in pain.  i know that my Mom either cried or almost cried during this.  I remember her asking them if they even numbed me and they all tried to figure out why it was so incredibly painful.  I have no idea what the problem was (the punch biopsy on my chest months prior didn't hurt at all when they did it) but there was most definitely a problem and I felt everything.

The next memory that I have is of me being on the gurney and pushed through halls on my way to my room.  I was lifted onto my bed and they rolled the board out from under me as they re-positioned me to be sitting up in my hospital bed.  I remember being absolutely mortified that I couldn't physically help them at all and was completely at their mercy.  I was still crying from the biopsies, in severe pain all over my body, scared, and royally peeved that I was being admitted.  Then I found out that I had to share a room.  Ugh.

Sharing a room ended up being an extremely important blessing that I desperately needed.  I was moved into a room with two of the most wonderful women, Diana and Robbie.  Robbie was recovering from a surgery and her partner Diana was by her side the entire time.  Those women quickly took me under their wings and became vital parts of my hospital stay.  I was blessed to be in their room with them for about two days before they moved to a private room down the hall (of course I made Mom and Mama Jo take me to go see them daily my entire stay!).  That first night there I was in immense pain.  The nurses weren't doing much to get it under control.  Mom and Mama Jo stayed with me for a few hours and then went to get dinner and find a hotel.  At that time Diana stepped right on up as "stand in Mom".  She told me stories, got to know me, and made certain to get a nurse every single time that I whimpered in pain even if I told her that I was doing "just fine".  That entire night she took care of me.  I honestly do not know what I would have done that evening without her.

I can't remember much about the first few days.  I know that my sweet friend Amber came to visit me every single day that I was there.  Being in Seattle, four hours away from my home, I didn't really expect visitors.  I was grateful that Mom and Mama Jo stayed as that was more than I honestly expected.  My friends and family went above and beyond.  Amber came and saw me daily, her boyfriend Mitch came with her a few times, my best friend Laura's sister Marie came and brought her daughters (and her husband ended up helping Mom and Mama Jo out with a discounted hotel room for the majority of their stay, too!) as well as some amazing homemade chocolate chip cookies, a friend of mine from high school named Amber Spink came to see me, another friend from high school, Phillip Matson, came and brought his new wife to meet me, Kathryn and her super adorable little girl Brynn, and my friend Shawn planned a trip to visit his family there and made time to surprise me with a visit!  After they moved rooms, Diana came to visit me multiple times daily.  

"Darkness"

I don't know how many times I started writing about Friday, February 8th.  Nothing too terribly eventful happened that day (the things that I do remember are that my Mom and Mama Jo came home from their cruise and Mom finally made it in to see me...and that's about it actually) but I'd start crying every time that I tried.  For weeks I'd go back and read some of my posts and become terribly saddened so I'd find something else to do.  I really wish that I would've pushed through and written about my experiences as I barely remember them now.  I remember that Saturday, February 9th Mama Jo and Mom both came to see me and I ended up being released that day!  I remember that Sunday, February 10th I went with the family to lunch for Nicholle's birthday.  At that point I could walk but I was in a lot of pain.

I can't remember if it were on Sunday night or Monday night that I got significantly worse.  One of those nights, around 2am, I stepped out of bed to make a quick trip to the bathroom.  I put one foot down and fell to the floor in immense pain.  I tried to get up but began crying in pain.  Both of my legs from my knees down were in excruciating pain and, for the first time, both of my hands were too.  I tried and tried but I could not get up.  I couldn't move or scoot myself anywhere.  I was 27 and had literally fallen and I couldn't get up.  My cell phone was out of reach.  I was terrified.  I was in more pain than I'd ever felt before.  I wasn't sure what to do.  I  lay on the floor and cried and cried and prayed.  I finally found a way to slowly inch myself with my shoulder blades and hips across the floor to the side of my bed.  It was only about a foot that I had to move but it took me until 5:30am.  When I reached the side of my bed I bit my lip as tears streamed down my face and I literally FORCED myself to roll over and get on my knees so that I could use my elbows to pull myself up and onto my bed.  After I made it into my bed I just lay there and cried.  And cried.  And cried.

That day Noelle came over to see how I was doing.  I told her about the incident.  Between her and my Mom they decided Noelle needed to move in.  She moved in on either that Monday or Tuesday and stayed until...well...she ended up living with me and my house until mid-March.  Anyway, she first moved into my spare bedroom but after a second falling incident during which I lay on the ground screaming her name for almost three hours, it was decided that she should probably move into my closet.  She put a blow-up mattress in there and moved right on in.

By Wednesday I couldn't do anything for myself.  I was in such extreme pain from my knees down and my elbows down that I literally had to be fed, bathed, dressed, etc.  Noelle carried me piggy back to the bathroom as needed.  Donna brought me a wheelchair so Noelle could put me in it and I could go to different rooms of my house.  I remember lying in my bed and crying while Noelle rubbed pain-a-trait lotion into my calves.  I remember another time that I fell and Noelle came to get me up.  I was on the floor and had managed to roll onto my back and get wedged at an angle on my bathroom floor.  She helped reposition me before we got me up but after I was repositioned she sat on the floor with me and we talked.  She thought I needed to go back to the hospital and that she should call an ambulance.  I told her that I absolutely would not go and to not worry because I had an appt with my Rhuematologist in Seattle that Friday.  I remember her calling Mom to ask her what to do.  In the end, I won.

Friday morning came and Mom, Mama Jo, my wheelchair, and I loaded up into my mini-van for our trip to my dr appt. that afternoon.  None of us really thought that I'd end up staying there and Mama Jo and Mom had joked that even if they did keep me, they were taking the van back home because they and their husbands had a double date planned for Saturday night.

I don't remember much about the drive to the hospital or getting to my dr's office.  The only real memory I have is when my dr walked into the exam room and saw me in my wheelchair.  She started to tear up and that made me tear up.  She leaned down and hugged me and I just remember her telling me that I was one sick little girl and she would figure out what was wrong.

"Remember"

By Thursday, February 7th I had been getting insane amounts (the absolute maximum dose) of IV steroids (Solu-Medrol) daily for almost two days.  That is on top of the typical 40mg of Prednisone that I have been taking orally since November.  Much to my surprise, I wasn't feeling many side effects!  I was actually starting to feel a bit better!!  My ankle and foot pain was diminishing little by little and I could actually put pressure on them to stand and pivot myself in and out of my wheelchair instead of having to slide for my transfers.

When my hospitalist came in on Thursday he told me that he would be talking to the rest of the team, but he was pretty certain that they weren't going to transfer me nor do a PICC line.  He was happy that a difference was being made and even suggested that I may get to be released within the next few days.  That was absolutely wonderful news!  Not only did I "shout" it all over my Facebook, but I was ecstatic with everyone who came to see me that day!!!

Rick (my step-dad) was usually my first visitor of the day, he was also the only person I could early morning text!  He is an early riser and, although normally I'm NOT, in the hospital I had to be.  If I found myself bored, thinking too much, or just needing to chat I'd text him and he'd always respond.  When he came in to see me that morning we got to be excited about the news together.  On days that my Dad came he usually came an hour or two after Rick.  I can't remember if he came to see me that day or not but I know that he was excited when I did tell him.  After Dad it was usually Nicholle for her lunch break and then Julia on her lunch break.  The two girls were very excited with me, too!  In the evenings I could expect Rachel (and often her boyfriend Dan and his roommate Jordan) to swing by and she was VERY excited!!  Noelle typically came by in the afternoon or evening and I was blessed with many other friends who took the time to drop by.

Sadly, I can't remember everyone who came by!!  For example, Julie asked me the other day if I remember her and Livi bringing me a cupcake one day...I can vaguely remember Julie, I definitely remember hugging Livi, but have no recollection of the cupcake (although I saw it in one of my pictures and racked my brain like crazy to try and remember where it came from!).  I know that Lana came by multiple times, and Darci and boys stopped by with flowers and pictures from the boys.  I remember Travis and his girlies came by again and this time Katie brought me her Nintendo DS because she was very concerned that I was too bored.  Donna came by multiple times and I know that one evening/early morning (absolutely no clue which one) I was having a very emotional moment and feeling very alone so I decided that it would be okay to call her to help me through it.  Thank goodness she was so kind and compassionate that she actually answered her cell phone (it was like 2 or 3 in the morning on a work night!) and talked me through my meltdown.  I remember Rebecca stopping by and Joseph and Dianne and CJ and
my Bishop and Kim and Maggie and Kellen and Angel and Jamie and Jared and kids and my Grandma and my Aunt and Block and Ariel and I'm sure that there were more but, as I said earlier, my memory of this entire thing is so scattered!

Anyway, my point is that I am so very blessed and loved.  I am so grateful for each and every person who came to see me, sent something, wrote me a message, texted me, called me, prayed for me, and/or sent positive thoughts and vibes.  I particularly appreciate hearing from people that I don't typically talk to regularly.  One positive thing about going through this entire incident is that I've gotten to speak with people whom I haven't been in contact with for years.  :)

This is the best I've got for ya for this post...it's the picture that I took and I saw the cupcake in but I couldn't for the life of me figure out how or where I got it from!  

"Sunshine"

Wednesday, February 6th remains a mystery to me.  According to Facebook I got TONS of love and support that day.  I just love, love, LOVE going back and reading all of the incredibly sweet and supportive messages that my amazing friends, family, and ward members sent my way.  The best part is that not only were they very much needed and appreciated at the time, but still today I can go back during my rough moments and use them to help give me courage to move forward.

I'm gonna have to rewind just a bit because it just occurred to me that I missed blogging about a VERY important happening!!!  On Tuesday, February 5th my VIP group from The Arc came to see me!!!  I love The Arc.  I love everyone there.  I have worked/volunteered there since I was 12 years old and I honestly see many of the staff as a second family to me.  Throughout the years I have helped in many programs (y'all have probably heard me obsess over my summer camp, Partners and Pals, once or twice!), the most recent of which being the VIP program.  It is an afternoon program that meets twice a week and is geared towards high functioning adults with disabilities.  We just meet at The Arc and go have fun.  Movies, crafting, cooking, shopping, are just a few of the many things that we all do when we get together.  This past fall I had to resign from working that program regularly as my health was so spotty but I still go back regularly to volunteer or fill in for one of the four staff who currently work the program.

Sandi, the original VIP leader, got hold of me and asked if it would be alright for her to bring some of the VIP members by (only some because we have about forty!) the hospital to see me.  :)  I told her of course it was and waited patiently that Tuesday afternoon for them to arrive.  Sadly Sandi had to stay in the van, but Phronsie brought up a group of about ten people to come and visit with me.  They brought with them a "get well" card that they had made and all signed.  They all squished into my room and hugged me one by one.  They gathered around the foot of my bed and asked me question after question.  They told me about things that they had been doing without me at VIP.  Some told me about their own hospital experiences.  It was so good, so soul healing to get to visit with them.

These are some of my VIP people out to a Thanksgiving lunch at Old Country Buffet back in November.  I just love every single one of them!!!

"Crazy"

The night of Tuesday, February 5th and early morning of Wednesday, February 6th was not a good night for me.  It started out well; my adorable friend Kellen was on shift and got to be my CNA!  Initially I was a little worried about how that would work for us but it turned out to be beyond wonderful.  He was a perfect CNA, professional, but I knew that he really cared about me and that made a world of difference.  Plus, out of all the CNAs that I had throughout both hospital stays, he was the only one who could get my vitals while I was sleeping!!  He ended up getting to be my CNA three nights in a row and that really brought me a lot of peace.  Sadly, I'm sure I ended up making this shift of his hell.  I still feel terrible.

Shortly after Kellen and my new nurse came onto shift my IV became blocked.  They told me that they'd need to take the current one out and place it again.  I put my big girl pants on, held Kellen's hand, and let the nurse try two different times.  She finally said that she wasn't going to get it so she called in the most experienced nurse on the surgical floor I was on.  She came in, tried twice, and couldn't get it either.  By now I'm sure Kellen's hand was starting to bruise.  This nurse conceded and it was decided to call the most experienced nurse in oncology to come up and try.  She ended up getting it (just barely) on the first try.  This IV was now in the top of my left hand.  (I STILL have a bruise on the top side of my left forearm from the second nurse's attempt...)

By the time the final IV was placed my nurse, Kellen, and I were exhausted from the ordeal!  Maybe more me, but we were thrilled to have it over for sure.  It was late and I decided to try and doze off.  Side note: my good friend Danny had stopped by and brought me a few of his old button up work shirts earlier that day.  One of my favorite (lounge) outfits in the world is a men's button up shirt and a pair of my short sweat shorts.  I could live in them if I could.  I was so excited that he brought those for me; I went to bed that night in my favorite one of the few and I was just as comfortable as could be.  Between the new comfy outfit and the exhaustion from the activities of the evening, I fell asleep fast and was sleeping hard...until...

This picture is from the beginning of last summer (I think) but it is the perfect example of the clothing that I would wear 24/7 if it were acceptable, and the clothing that I had on this evening in the hospital.  A comfy men's button up shirt and comfy short shorts...love!

About 3:30am I woke up because my chest was cold.  I was sleeping on my back and had my left hand (IV hand) resting on my chest with my right hand down by my side.  When I opened my eyes and looked down all I could see was red.  I slowly lifted my hand straight up from my chest and it was dripping blood from the pads of each of my fingers and my palm.  Clearly it was sitting in a pool of blood.  I looked at my chest and my shirt was literally soaking in blood from my neck down (I later saw that it was down to my hips).  I have this really weird quality about myself where I can handle emergencies perfectly so I didn't panic, I just calmly used my non-bloody hand to press for the nurse.  It took Kellen about ten seconds to show up in my doorway.  He walked in and said "I was just coming in to do...we'll probably have to wait on vitals actually...I'm gonna go get your nurse...we'll be right back."

Him and my nurse were back in no time and they both went right to work.  The nurse stopped the IV and wrapped what was left of the IV site and Kellen started cleaning up my bloody hand.  I sat and shivered as I was beyond cold at this point.  I was so nervous that I had flat out ripped out my IV and that they'd have to try and redo it yet again.  I watched my nurse very closely as she examined the site and equipment to determine exactly what had happened.  Eventually she came to the conclusion that the IV tubing had simply come untwisted from the actual IV and so long as I hadn't clotted it could likely just be twisted back on and we could continue it's use!!!  Before we could test that though, we had to clean up all of the blood.  It looked so much worse than it actually was as the bloody mess was at least half saline from the IV bag.  

Who knows how long this had been leaking all over me; when we removed my shirt there were dried blood stains all over my hips, stomach, and chest.  By now I had been in the hospital for so long and at everyone else's mercy that I honestly had no shame.  I was very sick and I couldn't do many things for myself.  Both Kellen and the nurse were the assigned caregivers for me that evening and this was the epitome of work and professionalism for them both.  It took the three of us to get me undressed, cleaned up, redressed, and the sheets/bedding changed.

This picture is actually of the original IV that was removed from me earlier that evening.  Who knew that there is THAT much tubing inside your vein when you have an IV?!  It definitely freaked me out a little bit.  You're welcome for sharing.

After the mess had been cleaned up it was time for my nurse to try and reconnect the IV.  Kellen and I both said silent prayers as she screwed the line back to the IV and went for the unlock switch thingy on the line.  They watched and I paid attention to the feeling in my hand and at the same time we all realized that it was still working and there was no clot!!!  Huge sighs of relief came from all of us!  They packed and taped the IV very tightly so that it wouldn't budge and with that the ordeal came to an end.  By the time all was said and done and I was good to go back to sleep it was about 5am and my blood draw lady was there to poke me.  The hospital morning routine started: blood draw, order breakfast, eat breakfast, take my pills, try to take a morning nap but get interrupted by my hospitalist doing rounds, etc.  Speaking of morning pills...

And these are just my morning pills...and don't forget that the IV was filling me with more meds too.