Time to Resume

Here is where we are in my treatment:

Upon my diagnosis in March, I was told by the doctors that my cancer was a nasty one: invasive and fast-growing.  I was scared.  Not scared that I was going to die, but scared to wait for treatment.  For that reason, we followed the doctors’ suggestions and immediately started chemo treatments with the oncologist my surgeon recommended.  Normally we would have done some research on a doctor that fit our needs and beliefs.  I have completed 12 weeks of chemotherapy-some weeks easy and some a living hell.  In this time, we have had lots of concerns and questions and most of those questions and concerns went unanswered and even blown off by my medical oncologist.  It has become clear that this doctor is not the perfect fit for us for many reasons:

• When questioned about treatment of the side effects of the chemo, more meds are thrown our way, but they are followed with little explanation or guidance in finding appropriate dosage.
• Anytime we questioned anything being done or that was prescribed for future treatment, the only answer given was “it’s protocol.”  When we questioned further, there was no explanation; just that word “protocol.”  We were treated as a problem because we asked questions.
• When we requested follow-up testing of a secondary MRI, we were told that “that’s not what we do” and told it would be a waste of money and time.  We were told that it wouldn’t show anything because we needed to continue the treatment in order to see any change.  We expressed that money was not an issue and we would be happy to pay for it, yet it still was not ordered and we had to seek the referral from another doctor. (BTW-when we had the MRI done, we found that the mass had shrunk a great deal–Praising God for that!)
• When we mentioned that we would be seeking guidance from an integrative naturopathic clinician, we were told it was a waste of money and that “that stuff doesn’t work.”

It has become clear that we need a new doctor.  

The continued treatment path prescribed for me at this time is 3 months (4 treatments) of adriamycin and cyclophosphamide AKA: AC or The Red Devil.  That will be followed with breast surgery and reconstruction.  Let me just say if my previous chemo regimen was an easy one, I am not about to jump into AC based on just one doctor’s opinion; especially since we don’t see eye to eye with that doctor.  (I told Paul that I would concede and do the dang thing-meaning The Red Devil-if 3 doctors made that recommendation.)  So we took a breather to seek out other opinions, and essentially to find a new oncologist.  However, the US medical system is very broken and this has not proven to be an easy task.

We have been actively seeking not only another opinion, but essentially a transfer of my care since we are not seeing eye to eye with my current doctor.

There are many treatment facility options available both in my state, and easily accessible by driving or a short flight, but getting an appointment AND having insurance approve referrals has required me to become an acrobat.  Thankfully, I have a flexible job and I am able to make a bazillion calls and appointments to fight for my medical rights to be seen by the doctors that I want to see!

So here is where we currently are:

Another medical system/hospital in town that we were attempting to get into: DOOR SLAMMED!  This medical facility said they will not offer second opinions.  PERIOD.  And thanks to changes made in the Affordable Care Act, they don’t have to see me if I have care somewhere else.

While I see this as the Lord saying “Jami-this ain’t your place to heal,” Paul sees this as a challenge.  After a simple Facebook post, a friend of a friend took on our battle and helped us be heard and be seen.  This person helped us get an appointment when it seemed like that was not going to happen.  While I don’t feel confident this will be our choice, we appreciated at least being seen and getting another doctor’s opinion. 

Another option, locally, was a Cancer Specialty facility.  Honestly, I kind of had an icky taste in my mouth for this one because of an interaction with a receptionist right after my diagnosis.  But after stepping back and realizing that I should not base the reputation of an entire facility on the interaction with one individual, we began to pursue an appointment here.  It wasn’t easy.  It took several phone calls and more hoops to jump through for insurance referrals, but I am ecstatic to say we have had an appointment with my chosen doctor this past week!  

Our third avenue was to look at a Cancer Treatment Center in Houston, TX.  Everyone knows that this is THE elite Cancer hospital!  But if I thought I jumped through hoops for the local specialty facility, I became an Olympic Athlete to receive care at this facility.  They required a referral from my PCP.  This was a problem because my PCP had moved out of state and with all the craziness I have been dealing with, I hadn’t found a new PCP.  I soon realized that the majority of doctors recommended from friends and family are not seeing new patients.  Luckily, one of my Scentsy friends is a PA and took care of the referral for me but it required me driving to a town over an hour away at the drop of the hat in order to get that referral done ASAP.  Along with that PCP referral I also needed a referral from my existing oncologist since I was in the middle of care.  But at that point,  it looked like I had done the needed acrobats to be seen at the facility.  Well, kind of.  After both of those referrals, I was assigned a Nurse Facilitator and a few other “personal” advocates that I believed were there to help me.  I quickly learned that the left hand was not talking to the right and anytime I called, I had to start all over again with the story of my situation and what I was needing.  After weeks of back and forth and dozens of phone calls, I was told the great news that it was time to get scheduled for a visit.  WOOHOO!  I was thrilled!  Until I was told they could get me in on November 6th.  Seriously?  That is 3 months from now!  I have an INVASIVE and FAST-GROWING cancer and they want me to wait 3 months to even be seen?  Ridiculous!!!

So where does that leave me on this journey?

Exhausted.  That is where it leaves me.  I am tired of fighting the system.  But as I stated earlier, I wanted confirmation from at least 3 doctors that AC was the way to go, and at this point, I have heard that recommendation from four doctors.  I am ready to buckle down and do the dang thing and get this over with.

While all the doctors have made the same recommendation of a treatment plan, we have to make a choice of the doctor that will best suit our needs and belief system.  While I don’t want to do the drugs recommended, it appears that it is the best path for my future health and wellness.

So here we are:

I start chemo again soon.  4 treatments-21 days apart-totalling 3 months

But this time a new facility with a new doctor.

After chemo–then surgery and reconstruction.

But we have also added in a Naturopathic doctor to the mix.  She has guided me in my nutrition, vitamins, and suggested some new supplements for me.  While this doctor is not a cancer specialist, and she does not claim to be able to cure cancer, she has made some suggestions on things that could help ease the side effects of cancer treatment and keep me healthy long-term.  (I will share more about this aspect of my journey once I have had some time to see how it works for me.)

Our medical system is broken, friends.  It should not be this difficult to get second or third opinions.  You shouldn’t have to “know someone” to be seen.  You shouldn’t have to make fighting for your care your second job.  We live in the best country in the world…but it is broken.

If you have read my blog before, you know I like for my reader to have a take-away when possible.  Here is what I want you to know:

Should a major medical event happen in your life, please please please, do research before just going with a doctor.  But don’t just research the doctor themselves.  You need to research the facility in which they are affiliated with because once you start medical care in a certain facility or system, it is VERY difficult to change.  I have learned the hard way here so you don’t have to!