Friday, April 6, 2012

APRIL 6, 2012


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.

Comments:

Amen and thank you Amy!!
April 7, 2012 at 6:17 AM
Blogger Whidbey Woman said...
Sounds like a well-rounded, comprehensive treatment approach!
April 7, 2012 at 3:15 PM
Blogger Melanie said...
So what is the next plan? Timeline? Etc.? Think of you and your family often and always checking to see if you have updates. Hope you are feeling well! Hi to all the family too!
April 9, 2012 at 11:44 AM
Blogger I'm Nic. said...
Do not feel bad about the now-unemployed nurse. She was clearly unsuitable. Good luck with all aspects of your treatment. Your writing about your sleep issues resonated as my Mom strugges a lot with her sleep. Oh, and cherry pie....*drool*.
April 10, 2012 at 6:21 PM
Blogger Brit said...
I am praying for you Michelle...
April 12, 2012 at 3:26 PM

Thursday, April 5, 2012

APRIL 5, 2012


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.

Comments:

Tina said...
Michelle, I understand the back and forth~crazy mixed up feelings! I think it helps that you are being honest with yourself and working out those feelings.
I'll be thinking of you as you go through your appointments at CTCA. By writing about your experiences, you are helping a lot of other people make the right decisions about their care!
April 5, 2012 at 6:54 AM
Blogger Carol Pack Urban said...
I think every cancer patient / survivor has these feelings of worry and doubt, disappointment and fear. I know I do each and every time I see the oncologist. Even just walking in the center makes me want to throw up. I think you are in the best place possible. You have an excellent support system and even though I'm on the east coast, and not physically there with you, I'm only a phone call away.
April 5, 2012 at 8:30 AM
Blogger I'm Nic. said...
Keep sharing your thoughts...we are listening.
April 5, 2012 at 8:15 PM
Blogger steffy said...
My husband feels the same every time we head to the doctor or feels sick - its part of the Post Trauma Stress that comes with having cancer. I personally as a caretaker of him, have it as well.

I always say that just because the cancer is gone, the cancer is never gone.

Stay strong & Focused but most of all be kind and patient with yourself.

steph h
livefitandsore.com
April 6, 2012 at 4:08 PM
Blogger Amie said...

It's okay Michelle to feel those up and down moments- this is a journey that none of us could ever possibly understand. But...we are all here for you during the good and bad moments. Live those moments, feel those moments and then say goodbye to them and that is the best you can do!!! Stay strong and be who you are cuz that is the Michelle we love :)
April 10, 2012 at 1:56 PM

Wednesday, April 4, 2012

APRIL 4, 2012


This morning, I got a phone call from my former oncologist's office.  Apparently, they got the request from CTCA for my records, and their policy is to ask the patient whether this is for a second opinion or if they (the patient) is transferring to another facility.

I felt bad for the poor girl that had to ask me that question.  :)

I was honest with her, and told her the truth.  I said that I had an issue with a nurse, and that it is my full intention to never step foot back in their office again.

Did you know that when you say something like that to a doctor's office, you ignite a firestorm?  *grin*

I won't go into specifics and bore you.  Suffice it to say that, within 5 minutes of hanging up with the medical records clerk, I received a phone call from Dr. Rakkar.  He was pretty upset about what happened, and after much talking on my part, he asked me to reconsider.  He gave me his cell phone number (I'm to call/text him directly), and assured me that I would never have to deal with that person again.  As my friend called her, Icky Nurse.  We'll use that moving forward.

About two hours later, I received another call from the doctor's office.  It was the head nurse and the office manager, asking me to again go over what's happened and why I'm leaving.  I went through the story, and there was some feedback, but not much.  Long story short, there was more promises that I wouldn't have to ever deal with Icky Nurse again.  I was asked to give them another chance, and assured that they will take care of me.

While I appreciate the effort, I honestly feel like it's too little, too late.  As I told all of them, they have a person working in their office who has, single-handedly, broken my trust in their office.  I can't imagine walking back in there and wondering what's going to happen.  Waiting for the inevitable screw-up.

Both my doctor and the head nurse told me that they are aware that they have a problem with Icky Nurse, and that they will be dealing with it.  My thought?  Why the hell is she still dealing with the patients?  Why is SHE the person that the sick and emotionally fragile chemo patients are routed to?  How is a patient supposed remain positive, upbeat, and hopeful when they have to argue, fight, work for basic needs?

I told the nurse/office manager that, while I do appreciate what they are trying to take care of me, I'm almost more concerned about the other patients.  I have the energy, the time, the strength, the willpower, the attitude, the stamina to ask questions, to be my own advocate, and to stand up and advocate for myself.  While my energy is meant to make a difference for my own personal situation, I want to make sure that things change for the patients that don't have anyone advocating for them.  I worry about the people who expend all of their energy getting to chemo, but literally can't argue with Icky Nurse to get the meds they need.  I worry about the people that just blindly trust the doctors and don't know that they can question their doctors and nurses.

Bottom line: patients and their families/caregivers are fighting a hard enough battle.  They shouldn't have to battle their oncology staff for *anything*.  In my opinion, your medical team needs to be your partner in this battle.  You need to be able to tell them everything - you need to tell them when you're sick, what your poop looks like, how your insides feel.  They are privy to the most intimate details of your life, and if you are always worried about what's going to go wrong, you aren't going to be honest with them.  This does not allow for a good, healthy, healing relationship.  And, isn't that what we're all going to the oncologist for?  Health.  Healing.

I've promised Dr. Rakkar that I will let him know what I decide.  I've told him that I will continue to pursue a second opinion from CTCA, and will make a decision with all conversations in mind.

Hope he's not holding his breath.....

:)

Comments:

Melanie said...
Amen! It sounds like someone should lose their job, or at least be reassigned. I hate to say that bc i had a friend who was "icky nurse" but in the end you are the most important, not her ego or personality conflicts. We're thankful you are healthy and strong to be your own advocate.... just wish you didn't have to be. :*-)
Love you, and always thinking and praying for ya!
April 4, 2012 at 8:52 PM
Blogger Carol Pack Urban said...
In this economy people are lucky to have jobs and be able to keep them. This "Icky Nurse" doesn't have an attitude that warrants being around people and should be fired immediately. There are plenty of good people out there who have wonderful, caring attitudes who are just waiting for that job! I would not feel a bit sad. She cost herself her job.
April 4, 2012 at 9:33 PM

Later:

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. 

Comments:

Thandi said...
I am SO happy for you! So so happy. You need all the positivity you can get and this is a major victory.
April 5, 2012 at 2:41 AM
Blogger Caroline said...
CTCA is a place I would head if I had another little cancer visit.... Sounds wonderful. Stay positive.
April 5, 2012 at 3:12 AM
Blogger Melanie said...

I wish this website had a "like" button.... that is how I feel right now! Good luck with the next visit... funny how you call a doctor's appt a "visit".... I like that!
April 5, 2012 at 4:07 AM

Tuesday, April 3, 2012

APRIL 3, 2012


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.

Comments:

papadragon said...
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 at 10:55 PM
Blogger 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 at 7:40 AM
Blogger Holly said...

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 at 9:00 PM

Saturday, March 31, 2012

MARCH 31, 2012


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 Zoo here 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.  The local facility is 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 Kim was 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!

Comments:

Amie said...
That is such great news about CTCA!! Sometimes, getting a second perspective is just what is needed - two eyes are better than one to look at your case and what you need to beat this!!! I am so excited about the whole body treatment - that is so cool and I love using all those modalities together!!! Love you! Let us know how it goes!
March 31, 2012 at 9:30 AM
Blogger Lori said...
Yay for whole body treatment! Just what you need! Love you and the family is praying for you!
March 31, 2012 at 9:42 AM
Blogger Tina said...
Sorry you have had to deal with such crap. It's so hard to deal with all that other stuff when you should just be concentrating on your health. You have a wonderful support system to help you--what a blessing!! Hope you can get into CTCA and get the care you really need!
March 31, 2012 at 10:24 AM
Blogger papadragon said...
CTCA IS AWESOME! Theirs is a comprehensive program not only for you but things for the family as well. They aren't stuck on "this is the only thing that works" cookie cutter treatment, they will and do explore many traditional as well as non traditional therapies, and come up with a winning combination for your unique needs.... Add compassion and understanding to the mix and you have an awesome team.... I think the best part of it is that they include you, the patient, and give you some responsibility for your treatment, a level of control you dont have at other treatment facilities....
April 1, 2012 at 4:31 PM
Blogger I'm Nic. said...

I'm Canadian and I've heard for the CTCA! That is amazing. Reading about your mouthwash debacle made *me* crazy...fill a four year old script...really? Gotta hate it when common sense is in short supply!
April 2, 2012 at 4:57 AM