…The longest abyss of my lifetime… Learn about it, Use it, and Be your own ADVOCATE!

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Now I have the diagnosis, I now know I have Cancer. This wasn’t my first exposure to Cancer but, when it happens to you it is like a whirlwind or tornado has just come through and devastated all that you are and all that you know.  However, what happens next was the longest (even though for me it wasn’t very long) and the worst piece of my life, the worst feeling(s) I have ever experienced; waiting to find out the details of my diagnosis and treatment.

Although, I say, this was, what I considered the worst time in my life, I also found this period of time to be crucial for getting things in order; NOT funeral arrangements or wills! 😉

  • Researching Doctors
  • Finding out about your Insurance Coverage,
  • Scheduling time with a Therapist (TOTALLY NEED THIS ONE!)
  • Talking with Family and Friends
  • Building your Support System
  • Looking at Alternative Treatments for supplementation
  •  And for me, AND I STATE THIS VERY CLEARLY…THIS ISN’T FOR EVERYONE, Researching the Medical Journals on what I did know about my diagnosis

I wanted, from the get go, to be an outlier to the typical, or what I thought was typical, cancer patient.  I didn’t want to be a “warrior”, I just wanted to feel like me, and not have EVERYTHING change, and EVERYBODY look at me as a “deadman walking”.  I found this EXCELLENT site to help me Get My Stuff Together (the publications section has Lists and Forms).  I hope this will provide help to anyone who is feeling that crushing, overwhelming, I cant move feeling, after their diagnosis.  Also, this is another area where friends or family can help out if you are just feeling out of it (Totally justifiable and understandable!)

I will touch on each one of these points in more detail with my lessons learned:

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Doctors – Where do you begin when you have just been told, “You have Cancer.” Most likely whichever Doctor you went to see for the original testing, will have some recommendations.  When you are ready, talk to your friends and family. You will be surprised how many people know someone who has had Cancer and they will be more than willing to tell you about their Doctor choices. Research, if that is your thing…you can find “Top Docs” listed on many sites.  I went with two appointments initially (I believe in the second opinion) a Private Practice Doc and Mayo Clinic.  A note on Mayo – They have a 7 day policy in their Breast Clinic in Arizona, from the time you call, if you have breast cancer, they will schedule the initial appointment maximum 7 days out; THAT IS AMAZING!  Try to keep in mind, you have a choice! Go with your gut. Choose a Doctor who believes how you believe? Which Doctor has the qualifications you prefer? Which Doctor has the best “bedside manner”…you’re going to see them quite a bit depending.

Insurance CoverageThis is one of the first calls that I feel should be made.  Understanding what your coverage is; and this is a difficult one.  You need to fully understand coverage for cancer in your plan.  Some of the tests that a doctor may request, to develop your treatment plan, MIGHT NOT BE COVERED. It could depend on how the test is going to be coded in the system. (You might be thinking like me…the doctor is ordering it, he knows I have cancer, he knows my insurance, they wouldn’t request something that isn’t covered….AAAANNNTTT [sound effect] Wrong!  They are going to request what they feel they WANT to see to aid in their evaluation, not necessarily what you are covered for…JUST BEWARE, You MUST be your own ADVOCATE!  Ask the doctors before the treatment, if its covered and then ask for the code and call your insurance company, with the code, to ensure you are covered. I did this quite a few times due to that fact I saw two doctors…they both wanted their own kinds of scans and I had a ton of mammograms in various ways…I called each time they said, “this one is different, it has dye“.  I needed to make sure they were going to covered with these minor differences or else I could have been staring huge medical bills in the face.

A Therapist – I believe having a therapist while going through this entire ordeal has been a God Send.  Just having the person who I could say anything to (like,” is it all worth the fight” {when of course it was}) without judgment or feeling like they had to fix my feelings in that moment…PRICELESS!

Talking with Family and Friends – I found talking with Family and Friends were two separate animals.  I had a hard time at first telling my family; family in the larger sense.  My immediate family was even more difficult.  Everyone gets upset and the “why not me” statements are difficult to take.  Figuring out the best way and time….well there isn’t.  However, telling the little ones…I did some research… and I liked the approach of straight forward but basic, “Mommy’s got some cells that aren’t functioning the way they are supposed to and they have ganged up and created a glob that has to be broken up.” “I didn’t do anything to get this way and it isn’t contagious just something inside.” “So the doctors are going to help by X, X, and X” ” I may be tired or not able to run around but, I am still here for you to snuggle with etc”
That worked for me, it is difficult no matter what.  AND it is a personal choice on who you share with.  I found it best to surround myself with prayers and love so the more I shared, the more I got in return! Friends I’ll address in this next section…team-spirit-2447163_1920

Setting up your support System – Friends are amazing.  Friends are even more amazing when you need them! I have been totally overwhelmed in this arena.  Once you decide to talk about it to friends it can be like wildfire….which can be great and for some, not so great for others.  My experience, although I am a “I can handle this all myself” kind of person, was to be more open to telling people an talking about it.  I wasn’t going to hide from it, especially since I couldn’t change it AND LOVE, PRAYERS, HEALING VIBES AND THOUGHTS, all feel good to me.  The reach of MY Friends covered 4 continents and a good portion of the United States!  I felt Overwhelmed and Guilty that all these people were praying for me! I didn’t know how I would EVER pay them all back!  AND that is it…there is NO payback…People, Friends… and Friends of Friends, just want to help, want to send good thoughts, want to cook, want to pick up the kids, want to clean or bring dinner…Just Let Them!  This was difficult for me and to make it better, I pictured each and everyone of them as Angles…we never feel (at least I don’t) the need to pay back an Angel.

Looking into Alternative Treatments – I need to be honest here, I take a more natural approach to my health so, looking into Alternative Treatments was an automatic and normal response to my diagnosis.  To most peoples surprise, my personal Naturopathic Doctor provided me with conventional Doctor names and the name of, one of the few, Naturopathic Oncology Doctors in the US; who happens to be in my home state of Arizona. (Naturopathic Specialists, LLC; Dr. Rubin)  If you are going to embark on the “full” journey of Alternative Treatment for Cancer care, just know, health insurance does NOT cover, most treatments.  I will have another post on strictly on Alternative Treatments, Pros/Cons, Options, theories and research studies.

Researching your diagnosis before your first appointment -This is a fine line! Doctor Google, as some people call it, can REALLY Freak a person out!  Especially if you haven’t been to see the Doctor yet.  You can really send yourself into a frenzy. Most people say don’t do it!  I say, if you are like me…and you all know who you are….and researching is something you do for EVERYTHING….stick with the true resources, medical journals.  Give yourself a chance to ask informed questions; start to understand the cancer lingo!  For me this meant, ER+ PR+, HER2+ and targeted radiation to name a few. I recommend not to search the message boards until after you attend at minimum 1 initial diagnosis/treatment appointment.  I found the various doctor groups I had an opportunity to talk with were very understanding and knowledgeable. However, Cancer Support groups, in person or virtual, I have found to be a VERY important part of staying positive after you are in the throws of treatment and after.

Getting the rest of the story, as my Grandma Myrt, used to say…myrtIts scary, enlightening and overwhelming all at once.  But with a bit of prep work I felt EMPOWERED!  It is my fate and I am only going to trust myself and God to dictate that!

Good luck to you all!  Let me know if I can help or be there for you!

 

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