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

Sunday, November 29, 2015

Found a New Doctor.....

Woot Woot!

I am pleased to announce that I've found a new Gyno-Oncologist, with the help of my cousin's spectacular husband (who also happens to be a doctor) and she is WONDERFUL!  I left her office feeling like a million bucks, which is no small feet considering what occurs during those visits.


On November 18th I headed down to Utah, from up here in Idaho, because I had a bit of business to take care of in the valley.  My oldest made the trek down with me and I have to say, I have raised a hilarious kid.  We laughed non-stop as we traversed I-15 with my parents house as our destination. We arrived in the evening and settled down for a bit of a rest.  It was lovely to know that my younger two were being looked after by my husband and my lovely step-daughter.  I only worried minimally about them (because we're Moms and we are incapable of ever not worrying completely, right?).

Friday morning came far too quickly, and my mother and I boogied on up to St. Mark's hospital in Salt Lake City, where they have a center known as: Monarch Women's Center.  This is one of the offices that Dr. Z does business in, and while the hospital is easy to find, the women's center was a bit tricky.  I drug my poor mother all over creation before we finally made our way into the front door. Once we found it, I realized how ridiculous I had been.  If you're going down 3900 South, it's easy to cruise past it if you're not sure where to look. It is on the north-west corner of the block that St. Mark's sits on.  If you know that- you're sure to find it easily.

I was so nervous about a new doctor that we got there mega-early and had to wait for 30 minutes for the office to open.  Hooray for good company and comfy chairs by the elevator.  We were quickly checked in, once it opened, and patiently waited for my appointment time of 9:00 a.m. to arrive.  The staff at the Monarch Women's Center are super friendly and really fun- which made it less nerve-wracking than before when I've waited for doctors.

Suzie, her nurse, came to snag me and my mother and soon we were in a treatment room that had butterfly panels and sunny skies in the ceiling, instead of the stark, white, electrical lights that are so typical.  There was also a chair, instead of the "assume the position" table.  Say what?!  Here is what was most refreshing.....are you ready for it?.......



Dr. Z came in and talked to me- face to face, like a human being prior to asking me to change.  It makes me a bit emotional just thinking about it.  It was not a clinical "Let's discuss your medical history and get down to it" conversation.  It was a "Wow, you've been through quite a bit in the past few years, how are you?" kind of discussion, and man was that refreshing.  She also talked about some possible links in my medical history that was wonderful as well.  After getting to know each other for a bit she left the room so I could change into the sheet ( a real sheet people, not a paper sheet).  *As a side note: I wore leggings and a tunic to this appointment, which made it super easy to peal off those leggings, with my lower extremities still covered, and it was comfy. I highly recommend this, if at all possible, for these types of visits.

When she came back she asked me to kindly place my feet in the "foot rests," not the "stirrups" as most doctors refer to them as, and then she began the exam.  I'm not going to lie: IT HURT.  It was really nice of her to warm up the speculum (or the duck) and she was as gentle as she could be, but between the frontal and the rectal check- for the love- it was a bit much! I held on to my dignity until she and Suzie left, then shed a couple of tears and got dressed.  It was really nice to have my mom there to give me a few pats on the back.  She also apologized for the pain, which I thought was sweet of her since it was in no wise her fault at all.  Moms are the best!

After I was dressed, Dr. Z came back and sat down with me again to explain how things are looking. While I was as diligent as time allowed with the dilator, my vaginal canal is scarred shut at the top. She thinks it may even have scarred at an angle, which makes it impossible to see my cervix.  It's playing a lovely game of hide-and-seek at this point.  However, while she was examining me, she did her best to break up some of the scarring, which lead to quite a bit of bleeding.  She told me that my area is considered a "functioning vagina"- which makes me giggle just a bit and think of a second hand car- ha ha!


I would someday like to go back to having a "fully functioning vagina" but only time and more dilator action will tell.  My husband seems fine with a Ford Pinto rather than a Lamborghini, so I guess all is well in that area.


I walked away with a nice pink pocket that had a new medical dilator enclosed, after much discussion about commercial dilators and their various colors and "options." This whole conversation took place in front of my mother, who did not cease to impress Dr. Z with her ability to hold her own with this topic- and even threw out a few zingers herself regarding commercial dilators.  The pink pocket was tucked into a purple gift bag, that was topped with purple tissue paper as a disguise so that no one would discover the nefarious tool that was encased within.  I was told to use said tool to try and open the scarring in the canal as it would need to go to the left, with pressure, to the right, with pressure and then gently pushed forward.  The alternative is to use a local anesthesia and cut along the scarring bands to open up that area, in order to see the cervix once more.  No thanks! I'll try the "tooling" method first!

The last good news that I was given as we were about to leave, was that I am now on the 6 month rotation for check-ups! Hallelujah!   I was also told that cervical cancer has a peak re-occurrence of 3 years post-treatment, which means that my risk of redeveloping cervical cancer has dropped drastically.  I am still a carrier for the two separate strains of the HPV virus, but with careful monitoring and check-ups, I will never have to go through any cancer treatments again. C'mon- happy dance with me will ya?!



Thank you for checking in with me, for supporting me, for praying for me and for being rock solid through this whole journey.  I am forever grateful! I'll see ya'll in 6 months!