Sunday, January 10, 2016

A Letter to the Newly Diagnosed....

It is January, and while others are creating and losing the battle with new year goals - I'm sitting down during National Cervical Awareness month to write a letter that will hopefully serve as a bit of guidance in the days to come.

Dear Friend,
I'm starting this letter in such a way- because that is what you are.  Sitting there.  By yourself.  It could be two in the morning, or late in the afternoon and suddenly you feel yourself disappearing behind a diagnosis that you really can't wrap your brain around right now.  And so- you are my friend.  To be honest, the best advice I could give you in a situation like this; that is so new and so real- would be to walk away from your computer screen, or put your phone down.  Google is not your friend right now.  It will only fuel the fire of uncertainty and cause you to doubt your ability to fight this.  You must fight this.  I believe in you and your unfathomable ability to overcome.  I. Believe. In. You.
When initially diagnosed I was just told simply that I had what looked to be a cancerous growth. Based upon its location it was easy to identify it as cervical.  When I finally began to gather information, I was angry at myself.  Angry that I had gone so long without a check-up.  Angry that I had been exposed to HPV and didn't even know.  Angry that I had no idea what the treatment plan was.  Angry that I didn't understand words like staging, and that my body that turned against me.  So angry.
Allow yourself to feel whatever you need to feel right now, just don't let it take you down.
As you feel strong enough to begin to research a bit more, recognize that without a detailed diagnosis, and treatment plan by a skilled oncologist- you are self diagnosing and this is not good; well if you have an MD or an RN in this particular area you'll probably be okay, otherwise you are spitting into an inferno when you should be armed with a water tanker.  Be patient with the process, and be willing to demand answers, seek second opinions and pinpoint what exactly you're fighting.  This helps to eliminate the random searches and worst case scenarios.  Once you've been diagnosed and walked through the prognosis, that is when research becomes your best friend rather than your enemy.
Research the heck out of what you've been given.  You may just be surprised that there are several treatment options out there. You may be delighted to find that your staging is not as gloom and doom as initially thought it to be.  You may just surprise yourself with the amount of strength you gain from suddenly becoming an expert in your diagnosis.  Knowledge really is power and you have a wealth of it at your fingertips.  Now.......ask questions.
Seriously- ask away! The doctors your speaking with have gone to years of school so that they can share their wealth of knowledge with you. Ask and keep asking until you feel like you could take a test on this cancer and score 100%!  What you gain in this first part of your journey will help to keep you on top of your game and will serve as comfort when you feel your world slipping from time to time. I had a friend reach out to me with a website that might be up your alley at this point called Cure Forward. It is an additional information option when you're trying to find out all that you can about what you're up against,
Once you've gathered a treatment plan, or even before depending upon your situation- call your insurance company and find out what they'll cover, your deductible, and payment options.  Make sure that this is all clear in your mind before you start racking up the costly treatment bills (if that is where your diagnosis takes you).  It is also important to note that most insurance companies will contract with a third party to assign you a case worker that will help track treatments and costs; to make sure that you're being taken care of.  Take advantage of this.  I was blessed to have a remarkable case worker that took excellent care of me.
Now that you're off to the races, please take care of yourself.  Decline social engagements, snuggle your kids more, and just batten down the hatches  It really is okay.  Take the time to get treated and then get well.  This can't happen if you're running around being Super Woman.
Last of all please understand that you're not alone and that help is out there.  You can do this.  I'm always just an email away and happy to answer any questions  you might have, just know that my responses won't be those of a professional medical person, but more of one of a good friend.

Best of luck & all my love,
Kami

1 comment:

Abigail Stearns said...

Hi Kami! I noticed your blog and I greatly appreciate the stories and words of wisdom and encouragement you are willing to share with others. You are truly an inspiration. My name is Abby and I’m currently a student at Calvin College in Grand Rapids, MI working on a project called CancerEd. My team and I are developing curriculum materials to teach children about cancer in an interactive but scientifically accurate way. We are looking to send out a survey to parents who have had cancer to better understand how they communicate with their children about cancer and we would love your help with this! If you could email me at ans29@students.calvin.edu, I would love to give you more information about the survey and about our project. Hope to hear from you soon! Thanks!