Michelle Hastings: Mission::Remission - Medical Expenses Fundraiser

For: Michelle Hastings
Organizer: Jennifer Buck
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The Story

mission:remission Wife, mother, daughter, sister, friend, and colon cancer ass-kicker. Pretty cool titles, all in all. We are creating this fundraiser to help Michelle and her family with the medical expenses that will be incurred during her second battle with Colon Cancer. We would love your support, as every dollar counts and will help ease the financial burden of the Hastings family. Michelle used to create magic for thousands when she worked at Walt Disney World, Now it's time to create some magic for Michelle. Please join our campaign and donate today! Join Us on our Facebook Page - Search "Mission:Remission" Read Michelle's Inspirational Blog: www.michellewillwin.blogspot.com From Michelle: "I survive for so many reasons. Among other reasons, I survive to prove a point. I am NOT going to be a just a number or just a statistic. I want to let the medical community, society, and other survivors out there know that this DOES happen to people my age, with no family history, with no REASON. I survive because I have a voice. I am a survivor, one of many, and proud of it. We will be heard, and we will make a difference." Michelle Hastings Mom, Wife, Daughter, Sister, Friend, Colon Cancer Ass-Kicker!!!

Fundraiser Updates

Posted on May 13, 2012 by Jennifer Buck

TUESDAY, MARCH 27, 2012

Round Two: Cycle 1, Day 1

So, day one is down.  Well, sort of.  It's about 3:45 local time.  Right now, I'm not feeling great.  I was nauseous this morning almost from the moment I woke up.  I imagine that is part anticipation, part left-over meds from yesterday, and legitimate nausea from the chemo. 

Rambling from here on out:
I know that my own memories are tainting this round.  I'm remembering (consciously and non-consciously) things from last time.  Every sound, touch, taste, smell, experience is a reminder.  Walking across the threshold from the waiting room into the chemo room was, exactly as I expected, horrific.  I felt like I was walking through a really long hallway - it couldn't have been more than 15 feet.  I felt like it was the beginning of the end - it's not; it's the beginning of the end of this cancer.  Walking into the room itself was the hardest.  Just seeing the purple chairs lined up, empty, as if they were waiting for me. 

My parents and Lisa, the AMAZING chemo nurse, got me through accessing the port.  I can tell you that the whole process is pretty much a blur, like pieces of a puzzle sitting on a table, waiting to tell a story.  My story. 
I remember picking a chair, at the end of the row along the wall.  I don't know why I picked that one.   Anyways, I sat down and just blanked out.  I wasn't sure what to do - it was very surreal being there.  I was worried about the port being accessed.  I was worried about being sick, since I still felt nauseous.  I was worried about how I would feel.  The smell of the office wasn't helping.  It's a smell that sticks with you. 
Okay, so they access port, and pull cbc's (complete blood counts), to make sure I can get chemo.  They didn't need to do it, since they did the same thing yesterday for the port placement.  I think that it was a matter of giving me the time and space to come to grips with everything. 

Accessing the port didn't hurt.  Lisa numbed me up good, and I didn't feel the needle go in.  I can tell you, I tasted the saline.  Blech - dirty sweaty sock taste.  Very fun.  Thank God for mints.

First bag of drugs were pre-meds - aloxidecadronAtivan, andEmend.  All good things.  I had her only give me half a dose of Ativan, and the other half just before I left.  After we got those in, the Leucovorinand Camptosar.  Then, once those were done, the chemo nurse administered a push of 5-FU (into my port), then sent me home with my chemo pump.  All in all, it took about 3 hours.  By the time we headed home, stopped at Walgreen's to pick up the meds, and grabbed a sandwich, we made it back to our house and I rested up.  Mom and Dad left shortly thereafter, and I rested.  I'm feeling - ok.  Not great.  Still a bit nauseous, but I just took a Compazine, which should help.  I also have Ativan to take if I need it - trying to hold off, even though that works, b/c I'm waiting for the kids to get here.  Ativan makes me tired.  :)

The good news is that I don't have to go into the office tomorrow.  Last time, each cycle was three days in the  office.  This time, first day is about 3 hours in the office.  Then I go home with my iPump (still need a better name - any suggestions?) until Thursday.  Thursday's appointment will start at 8:30am, and should be less than 2 hours.  My first round of Avastin is 90 minutes, then I'm disconnected and FREE for two weeks.  Next cycle, the Avastin is an hour, then subsequent appointments are 35 minutes.  Not too bad at all, in the overall scheme of things. 

I'll probably start getting my Neulastashot next cycle.  They expect my white blood counts to go down pretty quickly, so I'll need to watch who I'm around and what I expose myself too.  But, for now, I'm okay. 

As I'm sitting there, the sound of my pump pushing the 5-FU to me makes me nauseous.  The Compazine seems to be helping, as did Mom and Dad arriving with the kids.  Stories about drama at 4th grade recess are the best medicine against nausea. 

Smells are bothering me right now.  All of my senses are heightened, but I'm definitely more sensitive to smells.  My son is sitting next to me right now, and all I can smell is kindergarten boy.  I don't mind that too much.  Means he's having fun.  :)

I think that's about it, especially now that the kids are here.  Thanks for your help in getting me through this first, emotionally difficult day.  Together, and only together, can we beat this thing.

4 COMMENTS:

Tinasaid...

Reading what you went through today, I can smell it and I can taste it. I always plug my nose when they flush my port. This keeps me from tasting it--the taste makes me nauseous! Other people smell tea bags or something, but plugging my nose has always worked for me. 
Glad you are done with your first day. Kids definitely help! I remember thinking I was too sick, or too tired to visit with my girls--but then they'd all come plop on my bed and I ended up feeling so much better. What a blessing our children are! 
Hope the steroids don't keep you awake all night!

MARCH 27, 2012 6:51 PM
chaoticfamilysaid...

Hope the first round goes well.

Erinne

MARCH 27, 2012 7:44 PM
I'm Nic.said...

You got it right - the beginning of the end of this cancer. Now you got me thinking of another name for the Ipump (we call it "Mom's waterbottle" cuz it kinda looks like one). But we need something catchier. Hmmmm. Wishing you heaps of rest and calm

MARCH 28, 2012 5:15 AM
Carol Pack Urbansaid...

I can't believe that I forgot about the fanny pack! You may not need the Neulasta. My blood counts never went down on Folfiri like it did with Folfox. I never had any of the side effects they expected me to except for hair loss. It came out in clumps and was extremely thin but never lost all of it. I was so happy not to have nausea like with Oxaliplatin!

MARCH 28, 2012 8:08 AM

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Posted on May 13, 2012 by Jennifer Buck

Posted on May 13, 2012 by Jennifer Buck

SATURDAY, MARCH 31, 2012

Saturday Morning Update, and Hope

Ah - Saturday.  Woke up this morning with minimal nausea, so I consider that a mark in the win column.  LOL! 

As you saw, Wednesday didn't go quite as planned.  Once I got home from the second trip to the onco, I was exhausted.  A short nap and nausea meds, for sure.  My dear friend Karena brought over dinner (chili and cornbread - YUM!), which was amazingly helpful.  I will definitely be asking for more help with meals - having that taken care of made all the difference.  I was able to function normally with the kids that night, which helped us all. 

Thursday was an early morning back to the onco office, after we dropped the kids off at school.  We got called into the financial office and were hit with the numbers.  Don't let anyone ever tell you that chemotherapy is cheap - my one drug is around $400 each time.  Another drug is well over a grand per use, and the Neulasta shot will be around $600 per use.  Needless to say, hitting my $8000 max out-of-pocket isn't an issue.  *sigh*  We got that figured out, and we went into the chemo room. 

I hate the chemo room.  I know I shouldn't, since it helps me and it will give me my life back, but I hate it.  I hate the smell of the office.  It makes me nauseous.  I hate the chairs we have to sit in, the IV poles, the fact that everyone in there is older than me.  I hate that people look at me with pity when I'm in there, especially when they hear it's my second go-round with cancer.  I don't want pity.  I want to smile and laugh and LIVE. I don't feel like I can do that in there. 

Anyways, we got to chemo and got hooked up with the Avastin.  I had a conversation with the nurse about my concerns - everyone keeps assuming that, since we went through chemo almost four years ago, that we know what's going to happen.  I had to stop her and explain that I have willingly and purposefully forgotten everything I learned during that time frame.  That doesn't even take into account what's leaked out of my brain as a result of chemo brain.  :)  So, we had a discussion about side effects, the differences between Folfox (previous chemo) and Folfiri (this chemo), etc.  I was glad we had the discussion, but upset that we had to initiate it. 

I had them give me a full dose of Ativan before they started the Avastin - the Ativan is an anti-anxiety medicine that also has anti-nausea properties.  I was super-nauseous before we walked in there, so I knew that this was a necessity.  Needless to say, I fell asleep (one of the great things about Ativan), and actually woke myself up snoring in the chemo room.  Embarrassing, but at least I wasn't nauseous.  :) 

We were out of there by 10:30 or so, and headed home.  My dad dropped me off at my house so I could sleep some more, and he went back to his place to greet my brother Bob, my SIL Ashley, and my niece Bella.  Yeah for family visitors!  I went over there a bit later, before I grabbed the kids from daycare for their parent/teacher conferences.  Those went well (of course - my kids are amazing...), and off we went back to Mom and Dad's house for dinner with (some of the) whole family.

Yesterday brought with it more nausea in the morning, but some iced coffee (so odd) and toast helped.  We took the kids to the Wildlife World Zoohere in West Valley.  It was fun - tiring, but fun!  While there, I started to notice some sores in my mouth.  So much for no side effects from this chemo.  When we got home from the zoo, I called the oncologists office to try to get a script for the mouthwash that helps with mouth sores.  What a debacle that was. 

Getting in touch with a chemo nurse is a treat.  Leave a message and wait for a call back.  Then, they called in script.  Perfect - except, when I got to Walgreens, the pharmacist told me that one of the ingredients of the compound is no longer made.  Really?  After much discussion between the pharmacist and the nurses (and some bitchiness on both sides), we finally got the ingredients settled.  Basically, the nurses kept saying that the pharmacy could just use my script from four years ago (really?), which they couldn't because a) they only keep records for 18 months, and b) one of the ingredients is no longer made.  I can't be the only person in this four year time frame to have asked for this "miracle mouthwash".  How have they not run across this issue before?  Luckily, the pharmacist was willing to stick up for me, and fought to make sure I got what I needed.  He said that the nurses at chemo were bitchy and mean, and he decided that he would be a jerk back to make sure I got this ASAP.  Thankfully, he was able to compound the mouthwash and I was on my way. 

I think what bothers me most is that I have to fight to get answers and to get my script.  If I call the drs office, I shouldn't have to go through a bodyguard (aka, pharmacist) to get what I need.  And, even though I went through this four years ago, I still need help with this.  This is all still new to me.  I know it's not new to them, but to me, this is all new territory.  And, to have someone keep acting like it's a pain in the ass to them to give me answers makes me feel like I should start looking elsewhere. 

And, that brings me to the next piece of news.  With the help of my amazing friends, I have started the process of changing doctors.  Nothing is complete yet, but we are in the process of getting the new facility the medical paperwork.  The new place is called Cancer Treatment Centers of America (CTCA), and is one of the foremost leaders in treating advanced cancers.  Thelocal facilityis in Goodyear, which is closer to our house than the current doctor's office.  I'll go into their facility more in detail in a future posting (especially once we get more information from them).  Right now, I'll say that I have had personal experience with this facility (it's where my friend Kimwas treated), and I know of several other colon cancer patients that have been/are being treated there.  It's where I told my family that I wanted to be if my cancer ever came back.  My friend Amy did some research for me, and got me enough information that it was worth pursuing this facility.  Long story short, the financial impact is the same whether we stay at the current facility or go to CTCA.  I firmly believe that the treatment I'm going to get at CTCA is going to be much more complete and personalized, and right now, that's what I need. 

We have meetings with them next week - they will be going back to my original diagnosis to look at all of the tests, including a potential rediagnosis if needed.  They are going to look at my case completely and totally, and we will be working with not only an oncology team, but a nutritionist, naturopath, mind/body therapist, and others to give me a complete, whole body treatment plan, rather than just dealing with the cancer.  I am so excited about this!  I'm especially excited about the nutritionist, b/c I've forgotten to eat in the past couple of days, and that had a big impact on how I felt.  My eating habits have changed just in the past couple of days (my tastes are completely different), and I know it's not good for me. 

Anyways, now that this post is way longer than I intended, I'll say that I have more hope today than I did a week ago.  I'm excited about this new possibility for treatment, and I'm so glad that I have this opportunity.  Don't get me wrong - cancer still sucks, and I wish I wasn't dealing with this.  But, with the help of my friends and family, I'm going to absolutely and completely beat this.  I WILL be one of the stage 4 survivors! 

Boo-yah!

5 COMMENTS:


Posted on May 13, 2012 by Jennifer Buck

TUESDAY, APRIL 3, 2012

Be your own advocate!

I'd like to say that my mouth sores have disappeared and are gone for good.  I'd be lying.  However, I can say this morning that, with the help of my primary care doc and another very helpful pharmacist, I am finally getting a little relief, no thanks to my oncologist. 

Over the weekend, my mouth sores did not get any better.  Matter of fact, they got worse.  TMI alert: By yesterday, my tongue was completely raw on the top and sides, my lips were lined with open sores just inside my mouth, and my mouth was actually bleeding from open wounds.  Gross, and SO painful.  Hard to eat, difficult to talk.  I called my oncologist's office yesterday morning, and didn't receive a phone call back until later that afternoon.  The nurse that I don't care for told me that she had called in a script for Lidocaine (a numbing agent).  I asked what that does and how it was going to help the problem.  Oh - the dr wants to see me.  Great - when?  2pm on Tuesday?  Well, I had plans (my daughter was being awarded with 2 academic awards at school, and I missed the last one - I don't want to miss this one).  I asked her what other times were available.  None.  At all.  For the entire week.  If I couldn't make it at 2pm on Tuesday, I would have to wait until chemo next week.

Really?  In two offices and with all the PAs and doctors you have, there isn't a single appointment available? 

Well, luckily, I was at my primary care doctor's office when this all went down.  I spoke with him about the mouth sores, and he took it upon himself to make a phone call to his local Walgreen's compounding pharmacist, who looked at the most recent mouth rinse, and they worked together to tweak it.  Within 30 minutes, I had an updated prescription for a better mouthwash, and was on my way. 

Needless to say, I'm not at all impressed with my oncologist.  At this point, they have now let me down more than once, and they aren't interested (in my opinion) in anything more than getting me in so I can pay more money.  They aren't looking at me as a person - to them, I'm nothing more than a number.  I'm just another recurrence.

But, I'm not.  I'm not willing to settle to be just a number.  This is my life we are dealing with.  If I have to fight with them to get what I need now, when I have energy and stamina, what the hell is going to happen when I am sick and laying in bed all day? 

I shouldn't have to fight this hard for something so simple.  If I had finished this posting this morning, when I was still so worked up about everything, it would have been much longer, and likely a lot more crude.  But, since then, I've had a conversation with CTCA, and I have true hope for the first time since this all started.  I'll update on that later - just know that I'm going to a place that will absolutely treat me the way I deserve to be treated - like a person.

Moral of this post:  You are your own best advocate.  For all the good you think your doctors and nurses are for you, it's up to you to make the final decision.  If something doesn't feel right to you, look at other options.  You are the patient - this is your life you're fighting for.  You have the right to make decisions without worrying about hurting someone's feelings or letting someone down.  When it comes to your health, you are the only person who can make a decision that is right for you.

For me, it's changing to another oncologist.  More on that amazing adventure in a bit.

3 COMMENTS:

papadragonsaid...

When all is said and done you are not JUST their patient... YOU are their BOSS! Without you they have a store front office with cracked windows and leaky pipes. Sadly insurance or lack of rules the day and dictates your level of care, but even the best insurance will pay the worst doctor.

APRIL 3, 2012 10:55 PM
I'm Nic.said...

Unnecessary and unkind. So sorry you had such a mess to unravel. Hope your mouth feels relief quickly....

APRIL 4, 2012 7:40 AM
Hollysaid...

Well said Michelle! I fired my first two dermatologist's when it became clear that the had little interest in having a patient with a serious Melanoma history and were treating me with disdain for having questions when I came in for appointments! We ARE our best Advocates! Way to liveSTRONG! Glad your seeking better out a better treatment team!

APRIL 4, 2012 9:00 PM

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Posted on May 13, 2012 by Jennifer Buck

Posted on May 13, 2012 by Jennifer Buck

Posted on May 13, 2012 by Jennifer Buck

WEDNESDAY, MARCH 28, 2012

Two trips to the onco office today

Dad and I put some serious miles on his Prius today.  I wasn't supposed to go to the oncologist's office today - it was supposed to be a pump-only day. 

But, I woke up this morning and there was a little but of blood in my tubing.  When I asked Dad about it, we both agreed that we needed to go to the office to check it out.  In we go....and, apparently, the blood showing was left over from yesterday's blood draw through the port.  Sometimes, the tubing can hold a small reserve, and  the nurse thought that it has just worked it's way back up the tubing during the night.  Ok.  We get it fixed, and off we go.

No sooner did we get home, and I looked at my tubing, and it was bright red, completely full with blood.  Crap. Called Dad (he had only been gone for maybe 4 minutes) and back we go.  *sigh*

We got there, and when I opened my shirt, I realized that the blood actually leaked onto my shirt, etc.  Well, after some investigation, it appears that the connection between the port tubing and the pump tubing (a kind of plumbing connector) had a leak.  This meant that every time my heart pumped, it was pumping blood back into my tubing.  Eventually, there ended up being a clot in there, too.  So, we made the decision to replace the tubing, which seemed to be the most effective way to resolve the issue.  Luckily, it doesn't appear that I missed any chemo (didn't have any chemo leak out of the tubing), so I consider that a blessing. 

Needless to say, it was a long day.  I had been looking forward to a day without having to go into the office, and I didn't make it.  Oh well - next time. 

Tomorrow, we go back in for my first dose of Avastin and to get the pump removed.  I'm nervous about the Avastin, since I don't know much about it.  It's a longer infusion (90 minutes), I imagine so that they can make sure I don't have a reaction.  I've purposely not looked up side effects.  That whole mind over body thing....

Today has been okay from a side effect standpoint.  Still some nausea, but I've been able to keep it under control with mints, lemon drops, snacks, cold drinks, and (admittedly) a Compazine first thing this morning.  Hoping that tomorrow brings me an easy day, with no Avastin side effects.  I'm off to bed, with the help of some antacids and Ativan.  Antacids to help with the atrocious heartburn, and Ativan to make sure the nausea (and anticipation) doesn't wake me up in the morning. 

Good night, all!

1 COMMENTS:

Carol Pack Urbansaid...

Both my Folfox and Folfiri rounds were with Avastin. I don't recall having any side effects from it.

MARCH 29, 2012 2:10 PM

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Posted on May 13, 2012 by Jennifer Buck

WEDNESDAY, APRIL 4, 2012

Initial Intake Interview with CTCA

WEDNESDAY, APRIL 4, 2012

Initial Intake Interview with CTCA

My phone call with CTCA yesterday was, in a word, amazing.  I wasn't sure what to expect.  Whatever I was expecting, they exceeded it. 

I hadn't realized it, but my experience over the past week or so with my other oncologist's office had left me very depressed.  I didn't realize that I was consciously ready to give up chemo treatments all together, so as not to have to deal with them ever again.  The thought of walking into their office again makes my stomach turn.  I literally get nauseous when I think of it.  I don't think that's healthy. 

Catherine, the Patient Navigator I spoke with, was kind, gentle, and understanding.  She understood the lingo, so I didn't need to explain the results of the PET scan (she had already looked at it), CEA levels, etc.  She had the information in front of her, and was able to talk with me about what they had already gathered.  We talked about my medical history, my family's medical history, how I was feeling prior to my re-diagnosis, how I felt during chemo last week, and how I'm feeling now. 

The conversation went around and around, in a good way.  The list of things we talked about are numerous and more than I could ever list here.  Here's what I remember discussing:

  • my relationship with my husband, my kids, family, friends, caregivers, etc.
  • my emotional status - this one came up several times in a variety of questions
  • how I handle stress (what do I do to de-stress)
  • how I prefer to express pain (pictures of faces, scale of numbers, verbally, colors, etc.)
  • my physical activity level, and whether I'm willing to continue with that (um, YES PLEASE!!!)
  • my spirituality, and whether I'd like to talk with the chaplain
  • my willingness to look at alternative methods of treatment for side effects
  • what I want to see happen, and why I'm leaving my current oncologist
  • what my goals are with this journey
  • whether my long-term plans have changed as a result of this re-diagnosis
I can't tell you the sense of relief I felt when I was on the phone with Catherine.  When she hung up with me, I cried - happy tears.  I finally felt like I had someone on MY SIDE.  
Don't get me wrong - I know I have an entire army of people supporting me, fighting this battle alongside me, and willing to step in at my first whimper to push me along.  But, with what I've been fighting at my former oncologist's office, I had honestly forgotten what it felt like to be a person, not a patient.  I had forgotten what it feels like to have someone consider me as Michelle, not cancer patient/recurrence number xxxx.  
My first in-person appointment with them is tomorrow.  I'm anxious, but excited.  I'm terrified, but happy.  It's a very confusing bungle of emotions, and I haven't been sleeping well.  Until I get in there and really know what it feels like to be a patient of theirs, I don't think I'll settle down.  I'm hoping I sleep better tomorrow night.  
All I know is that, for the first time in well over a week, I have REAL HOPE.  I think I'm worried that my appointment tomorrow will dim that feeling.  I'm hopeful that I'm wrong.  
My phone call with CTCA yesterday was, in a word, amazing.  I wasn't sure what to expect.  Whatever I was expecting, they exceeded it. 

I hadn't realized it, but my experience over the past week or so with my other oncologist's office had left me very depressed.  I didn't realize that I was consciously ready to give up chemo treatments all together, so as not to have to deal with them ever again.  The thought of walking into their office again makes my stomach turn.  I literally get nauseous when I think of it.  I don't think that's healthy. 

Catherine, the Patient Navigator I spoke with, was kind, gentle, and understanding.  She understood the lingo, so I didn't need to explain the results of the PET scan (she had already looked at it), CEA levels, etc.  She had the information in front of her, and was able to talk with me about what they had already gathered.  We talked about my medical history, my family's medical history, how I was feeling prior to my re-diagnosis, how I felt during chemo last week, and how I'm feeling now. 

The conversation went around and around, in a good way.  The list of things we talked about are numerous and more than I could ever list here.  Here's what I remember discussing:

  • my relationship with my husband, my kids, family, friends, caregivers, etc.
  • my emotional status - this one came up several times in a variety of questions
  • how I handle stress (what do I do to de-stress)
  • how I prefer to express pain (pictures of faces, scale of numbers, verbally, colors, etc.)
  • my physical activity level, and whether I'm willing to continue with that (um, YES PLEASE!!!)
  • my spirituality, and whether I'd like to talk with the chaplain
  • my willingness to look at alternative methods of treatment for side effects
  • what I want to see happen, and why I'm leaving my current oncologist
  • what my goals are with this journey
  • whether my long-term plans have changed as a result of this re-diagnosis
I can't tell you the sense of relief I felt when I was on the phone with Catherine.  When she hung up with me, I cried - happy tears.  I finally felt like I had someone on MY SIDE.  
Don't get me wrong - I know I have an entire army of people supporting me, fighting this battle alongside me, and willing to step in at my first whimper to push me along.  But, with what I've been fighting at my former oncologist's office, I had honestly forgotten what it felt like to be a person, not a patient.  I had forgotten what it feels like to have someone consider me as Michelle, not cancer patient/recurrence number xxxx.  
My first in-person appointment with them is tomorrow.  I'm anxious, but excited.  I'm terrified, but happy.  It's a very confusing bungle of emotions, and I haven't been sleeping well.  Until I get in there and really know what it feels like to be a patient of theirs, I don't think I'll settle down.  I'm hoping I sleep better tomorrow night.  
All I know is that, for the first time in well over a week, I have REAL HOPE.  I think I'm worried that my appointment tomorrow will dim that feeling.  I'm hopeful that I'm wrong.  

Posted on May 13, 2012 by Jennifer Buck

THURSDAY, APRIL 5, 2012

Emotional Day

As I got closer to today, I realized that I'm nervous.  I don't know why - it's not that I don't trust CTCA.  I think it's that I'm anxious about how things are going to go.  In the past, my drs appts have been pretty predictable.  I go in, get on the dreaded scale, head to the room, they take my vitals, and I sit and wait for the dr or PA. 

Today's (and this week's) visits are going to change that.  I think I'm in for a new experience, and one that will change my expectations about this whole journey I'm on. 

Over the past few years, I've become more superstitious than I think even I realized.  Each time I feel like things are going well and I start to relax, something happens that puts me back on high alert.  This time, high alert took on a whole new level.  Just when I felt like I was heading towards the words "You're cured" I heard "Your cancer's back".  Not exactly what I had imagined. 

So, having hope and feeling optimistic about this appointment today makes me a little nervous.  Am I expecting too much?  Am I holding CTCA up on a pedestal, setting myself up for a true letdown of meltdown proportions?  Will another place I've come to trust let me down? 

God, I hope not.  I think today is going to be emotional - if things go as well as I'm hoping, it will be a sense of relief and hope and teamwork and love.  If things don't pan out today and something goes awry, I'm not sure my psyche can handle it.  I think that's what has me edgy. 

I know I'm in rough waters.  Emotionally, I go back and forth.  I feel hopeful and warrior-like one minute, and depressed and frustrated and tore-down the next.  I think this is normal - I can't imagine how it isn't.  Three weeks ago, I thought I was on the tail-end of remission, well on my way to a cure.  I thought that life was going pretty smoothly, and this was all behind me.  Then, I got slapped upside the head with this cancer coming back, and my life changed, in a heartbeat.  I went from "I've got the rest of my life to live" to "Will I be here next year?".  That's a hell of a jump, especially at 35.  No one should have to think about those things when they are this young. 

Isn't it funny how our perception of age changes as we get older.  I know that, at one point in my life, 35 seemed old.  Now, it seems way too young, especially with what I'm going through. 

Anyways, sorry for the ramble.  Just thought I'd get my thoughts down and hopefully help my emotional status.  I do think today is going to be fairly emotional.  I'm really hoping that it's in a good way - a sense of relief, of optimism, of love, of true, unbridled teamwork. 

I only hope I'm not setting myself up for disappointment.

Posted on May 13, 2012 by Jennifer Buck

FRIDAY, APRIL 6, 2012

CTCA, Days 1 and 2

Yesterday, my folks and I went into CTCA for my initial intake appointment.  Walking in there as a patient was a very different experience.  It's one thing to be there as a visitor or a guest.  It's a completely different experience to walk in there as a patient.  Not in a bad way; just...different. 

Once Mom and Dad were badged up, we were escorted to the clinic.  I've only been in there before on a tour, so walking in there knowing that I was going to be seen there was a little intimidating.  When I walked in, they gave me an identification bracelet, sort of like the one you get at a traditional hospital.  And, it's begun. 

We got called back into a room, where there was a very comfortable chair for me and two "normal" chairs for Mom and Dad.  Vitals were taken, and the meetings began.  I met with several people over the course of the day, but instead of me going to a variety of places to meet with them, they all came to me.  I was given a schedule when I got to the room, and they also had the schedule on a white-board outside my room.  I knew who I was going to meet with, and when.  I will also say that they kept to the schedule, almost to the exact minute.  But, if there was someone I needed a few more minutes with, they took the time. 

I met with a Patient Navigator, who will be my contact at the hospital to help me answer questions about policy, get clarification about something, help me get a call back from someone, etc.  She's super nice, and she and I had a very nice conversation this morning.  After her, there was a Nurse Navigator, who's my contact for the medical team this week until I'm officially a patient (which happens if/when I accept the treatment plan next week).  I met with another nurse, who made a list of all of my medications.  I met with the intake oncologist, who has read through (most) of my medical history and gave me his version, then asked for clarification.  He did a physical exam, then we talked some more.  After that, the meds nurse came back in and took 7 (yes, seven) vials of blood. 

One of the things that my parents and I noticed was their willingness to answer questions.  When I indicated that I had a question, they stopped what they were doing and focused solely on me.  They answered the question(s), then made sure I understood what they said.  I even tested the theory with the intake oncologist, by asking him about something he did during the physical exam.  He stopped what he was doing and explained it to me.  Unreal - no cell phones, no emails to distract him, no looking at his watch.  And, I wasn't made to feel like I was intruding or irritating anyone.  Awesome. 

Once that was all done and they vampire had taken what she needed, we were taken to scheduling to set up the appointments for the next couple of days.  After that, my Patient Navigator Jessica took us on a tour.  I had seen the facility (when Kim was there, I became all too familiar with an inpatient room), but my parents had never been there.  Jessica took us through the kitchen/cafe area, into the salon (hair, nails, wigs, etc.), to the back of the facility into the massage/chiro/acupuncture, radiation, etc.  We went up into infusion (the chemo room), inpatient, outpatient hotel facilities, library, game room, chapel, relaxation room, rooftop garden, etc.  It was amazing, and better than I remembered.  You can take a tour of the facility by clicking on this link.  I can tell you that the tour is actually the hospital I am being treated in, and the facility is truly as beautiful as they make it look. 

This morning, Mom and Dad met me at the facility and we went back to the clinic.  Yvonne, my intake nurse from yesterday, met me and brought us back to the room for today.  She took my vitals (apparently, I've grown an inch - I'm 5'6", which is the tallest I've ever been....can chemo make you grow?), and we started today's meetings.  Naturopath, nutrition, and mind/body.  The naturopathic oncologist is a board certified physician, and he works in conjunction with the "regular" oncologist.  My favorite thing he said?  I will see my oncologist, my naturopath, and my nutritionist each and every time I come in for chemo.  No more waiting for weeks to see my doctor.  No more coming in on an off-chemo week because there aren't any other appointments.  They see me each and every time.  Freaking amazing! 

I liked what the naturopath had to say - they are going to use the traditional chemo, but complement that with naturopathic remedies to help.  For example, I have had an issue with diarrhea earlier this week.  Immodium worked.  They have a solution that might work better - charcoal.  Totally stoked about this! 

Nutritionist came in - I was a bit worried that this would be a "Thou Shalt Not" kind of appointment.  Was I ever wrong!  Rather than asking me a bazillion questions about my current diet, etc., she asked me about my last two weeks, how my diet has change, have my tastes changed, etc.  Then, she gave me some immediate relief items that can help with the nausea, smell sensitivity, mouth sores, etc.  We will be working together to make sure that I don't lose any weight during this treatment, and that I'm able to eat something.  Her words exactly - if cherry pie is the only thing I can eat and keep down, then by all means, I eat cherry pie.  Once we get me back into remission, we'll worry about how to eat in a way that can help prevent another recurrence.  I like this thought process very much. 

Mind/body therapist came in next - our talk with him was awesome.  He got a good feel for me (and for my parents), and I am seeing him again next week so he can help me with my sleep issues (I'm having trouble getting to and staying asleep).  I think talking with him will be really helpful to my overall recovery. 

The past two days have given me hope.  Plain and simple.  It's allowed me to look ahead at the journey I'm on with optimism.  I feel like I finally have a team with me that is actually WITH ME.  They are all here for me.  Their only focus is my well being, my mental outlook, my health.  I am the center of the treatment plan.  I normally don't want to be the focus or the center of attention, but this time.  It's all about me. 

And, it's awesome.  Feeling like there is a whole group of people there, focused on me and my fight, is such a fantastic boost.  Where I came from and where I'm headed is just unreal.  It's like two separate ends of the cancer-fighting world. 

Speaking of that, the other oncologist's office head nurse called to talk.  She asked what my thoughts were, and if I was planning to pursue treatment at the new facility.  I told her that, while I appreciate their efforts in fixing the issue, I couldn't imagine coming back into that office and seeing Icky Nurse.  I was promptly told that she was no longer there.  Does this make me happy?  Yes, and no.  No, because I don't want to be the person responsible for someone losing their job.  Yes, because my speaking up means that no other cancer patients will have to deal with her again.  Regardless, I told head nurse that I think I'm better off at this new place.  She understood, and it was done.

So, that's it.  I'm with CTCA now.  And, I would be absolutely remiss is I didn't thank my amazing friend, Amy, for taking the time to contact the hospital and working the insurance end of things to even make this possible.  Without her doing this, I would be facing this weekend dreading the coming week.  I would be completely and utterly distressed at the thought of going back into that office.  I wouldn't be looking at this fight as something I can win - just something I have to get through.  Now - I have hope that I can beat this thing.  Amy - without you, I wouldn't have that kind of hope.  That kind of optimism.  I wouldn't be fighting this with my normal attitude.  Now, I can.  Thank you.  From the bottom of my heart - thank you.  I love you, and will forever be grateful to you for this chance.

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