Officially a Survivor!

::Cue the Destiny's Child music::
I walked into the clinic here in Idaho yesterday, ready for another unpleasant check-over and rescheduling for 6 more months.
Let me back up a little bit....
In January of this year, my husband took a job assignment that moved him to Laie, Hawaii.  Poor guy, right?! The kids were still in school and our blended family has had a lot of things going on behind the cancer check-up scene. So I've been holding down the fort here in Idaho, while he's been working at his J-O-B in Hawaii.  We have a good system and he's been able to come home once a month for a week- so it hasn't been too bad.

Fast forward to yesterday.
I was walking into the clinic with our youngest son, because there wasn't anyone to hang out at home with him and I enjoy being in his company.  Now, before you start to stress out about a nine-year old in a cancer clinic, especially for a gyno-exam- know that I had this figured out before we left.  I made sure his Ipod was charged, and I knew there was a chair outside the exam door.  I would be with him or within earshot the entire time and quite frankly the staff in Idaho Falls is amazing!

There were a lot of thoughts going through my mind at this check-up.  I had recently had an endoscopy with a Dr. C, who found the reason for my rectal bleeding (ugh!). I have a fissure.  I wish I could say something more exciting like- I have 12 toes and that makes my hind-end bleed, but nope I just have a fissure.  It's not a super-large one, but it is in a location that makes any sort of roughage rip off any healing scabs and viola! bleeding.  While most people aren't happy to hear that, I at least knew the source of the southern pain.  He also found that the little flagella that work and move in my digestive tract, which helps move food through and absorb water have been melted by the radiation.  The chronic bowel issues have been enhanced by my body's inability to absorb water normally so everything tends to be a raging river, rather than a rambling one.
While our youngest waited just outside the door, and I had the cloth draped stylishly over my nether region, Dr. Z came in and began the discussion about dilator use.  I had been using it, but to be frank with you- the longer length came with a wider base.  I do not need a wider tool, just a longer one.  Unfortunately, the medical grade dilators don't work that way, and so we discussed commercial grade options.  Yeehaw! I like Dr. Z because we can laugh about things as they're happening and don't have to wait until the next visit.  Through a series of giggles and eyebrow wiggles we communicated just what a commercial dilator is, and how to purchase one.  My sides still hurt from holding back an all out guffaw.
Once the dilator discussion was concluded, I slid my rear to the edge of no return and the exam began.  All the while we were talking, I could hear Dr. Z's nurses chatting with G-man about our imminent move to Hawaii, where he liked to live the best, how excited he was and a whole myriad of discussions that kept him focused outside and not on his mother.  For that I am thankful.
The scarring has still not parted enough to look at the cervix.  This is a bummer, because it's the easiest way to make sure there aren't any new growths occurring.  The rectal part always follows the cervical check and so I decided to be pro-active.
"Dr. Z, I understand that last time was a non-productive exam because it hurt so bad.  I know it's going to hurt just as much, and I understand the reason for it now.  So, I'm going to cover my eyes like this," to which I placed both hands firmly over my eyes, "and I won't make a sound.  You do what you have to do so that I know I'm okay and then we can talk about it."  Her reply was epic!
"Okay, well, while you're covering your eyes like that, I'm going to cover my eyes like this, so that I won't start to laugh at you covering your eyes and I'll get done quicker.  Are you ready?"
I laughed, covered my eyes, and then nodded.
The pain was pretty terrible. Imagine taking a scabbed over sore on your leg and then purposefully rubbing it, then spreading it out wide.  The burn cannot be described adequately and the intense pressure is ridiculous.  Then it was done.
She said there wasn't anything she could feel that would be a problem.  She also reminded me that a pap at this point was well, pointless, as radiated tissue gives abnormal results.
She then said something I was not expecting:
"Kami, this makes 5 years from initial diagnosis.  We can go back to yearly exams.  You've made it!"
This caught me right between the eyes.  I was not prepared for it at all.  I always thought that the 5 year clock started at the first clean scan.  It begins when the cancer clock starts ticking!!
She handed me a paper with the name of a gyno-onc in Honolulu, should any problems occur, asked me to look into a commercial grade dilator, and stepped out into the hallway.
I quickly cleaned up, dressed and stepped out to find two staff members and Dr. Z chatting with Grant.  Life is good!
The reality of what she said didn't hit me until I got home.  The survival rate for my cancer and staging is 83% at 5 years.  Those are most excellent odds, however, how can you not think about the 17% that didn't make it?  I think about them all the time.  The moms, the sisters, the daughters, the aunts, the cousins, the friends- the 17%.

I am scheduled for my next exam in July of 2018.  In the meantime, I have a wedding to go to, an eclipse to witness, children to raise, a move to Hawaii, and a new chapter to begin.  Thank you for going on this journey with me.  Thank you for checking in to see how my family has been doing AND thank you for allowing me to share raw details that most people are not interested in hearing. Survivors are survivors because of what they've been through, but they become witnesses to the process and able to discuss it because of people like you who care enough to support us through it all. I am thankful. I am grateful.  I am blessed.

Much love,
Kami

Bi-Annual Check-Ups.....STILL!

Hi everyone! I know it's been nearly a year since I last posted and in that time frame, I've had two check-ups.  With moving to a new state, I needed to find a new oncologist.  Thankfully my cousin had valuable insight regarding gynecological oncologists here in Idaho and I was able to connect with Dr. Z.  After having all male doctors during my cancer journey, it has been refreshing to finally have a female doctor.  Don't get me wrong, I valued the insight and expertise of all of my doctors, and felt it was time to have a female physician work with me on the long haul.  That's what all of this is.  The reality of it hit me right between the...well legs, today.  I'll explain.
Due to some scheduling issues I ended up not having to drive to Salt Lake, which I had done the last two appointments I had with Dr. Z.  She was up here in my neck of the woods today, and so bright and early this morning found me in the shower preparing to do battle with the dreaded duck once more.
As I drove towards my appointment a feeling of anxiousness had me sliding back into the numb-zone where I tune out until the visit is over.  The thought of one more pair of stirrups, one more probe (frontal and rear) was just one too many.  Ginormous Q-tips, multiple solutions to help see scarring and possible problem areas.  How much can one tiny orifice really go through in this lifetime?
I got there early enough that I could sit in the winter sunshine and read, which helps me to relax. When it finally came time to stop my stalling, in I went and the staff was lovely.  Everyone greeted me with a smile and warmth.  The feeling of peace that you find in most cancer centers quickly overtakes the anxiety and after checking in, I sat in the waiting room and just existed for a bit.  I had brought along Christmas lists in order to multi-task, but found myself just wanting to be- and so I did, I just was.
After a short wait I was brought back to the exam room.  One of the reasons why I like Dr. Z is she has the exam "chairs" that start out like a large chair with an extended back on it.  The stirrups are tucked away which helps slightly.  Her nurse came in and got all my updated information, we discussed my failed colonoscopy (the doctors found nothing but the bleeding continues), and other various procedures from the year.  I was asked to change from the bottom down, given a white sheet and out she went.
I quickly changed, assumed the position of the patient with no pants, and waited.  Waited. Then waited some more.  I don't mind waiting in exam rooms anymore.  I used to.  It used to make me really irritated, but after going through everything that comes after the waiting.....I'm more than happy to wait.
Dr. Z walked in with her bright smile and extended hand, which I shook and then we chatted for a bit. It's nice to speak with her, because I feel like she listens.  Her brows furrowed when we talked about what wasn't on the colonoscopy she had ordered.  They raised when I told her about continued issues, She told me by abnormal pap was due most likely to radiation issues still, and then it was down to business.  Assuming the standard position, I slid my rear as far to the edge as I thought prudent (and after 4 years of doing this on a regular basis, I'm still a bit leery about going to far, for fear I should end up like Tom Cruise hanging on the cliff like in Mission Impossible) and still I was 2 inches short of the desired spot.  Sliding a bit more, the stirrups then came out.  Luckily I wore my Christmas socks and their stirrups are always warm.  Once I was where there was no turning back, Dr. Z brought out a new gadget.
My first response was "It's Johnny 5 from Short Circuit!" This may date me, but it really is what it looked like.  She told me the name of the gizmo which I cannot for the life of me remember, but it magnifies everything that she sees when she does her exam with the duck.  The duck came out, was warmed, inserted, and looking through the goggles she got down to business.  The first solution burned, the second one stung, and finally she stopped.  She got a bit of a scowl on her face, and told me I wasn't doing a good job of stretching out the scar tissue at the top of my vaginal canal.  She asked me why it wasn't broken yet, I told her simply "I"m lazy and choose life rather than dealing with it." This didn't earn me any brownie points, but she said she understood.
Then it was time for the dreaded rectal exam.  Yuck! Double Yuck!! I instantly started to shake and draw my knees together which is a naughty no-no during these exams.
"I'd rather we didn't do that," I whispered with my eyes shut.
"I need to, because I can't see from the one side, I need to try and figure it out from the other." I peeked slightly and saw her discomfort as well.
"Okay." I closed my eyes and when contact was made began to cry, but I didn't make a sound.  She stopped immediately and said that she wasn't willing to traumatize me further.  Hallelujah!! Miracles do happen!! There are so many issues right now with that area of my bod, that I don't even know where to begin.  Her stopping felt like Christmas morning to me.
In short my friends, I am still on the twice per year schedule, which is a bit frustrating, but hey-I'm here.  Also, I long for the day that this isn't a part of my life anymore and find peace with not having to think about it more than twice every year.  Lastly, I could be more diligent with the dilater, but I have other things I want to do.  Yes- I'll try to do better, because the alternative is having them surgically go in and cut it open, which has some serious drawbacks and doesn't guarantee that it won't heal shut again.....
Thanks for checking in on me.  I appreciate the continued support and love that I've felt through every step of this wonky journey! Merry Christmas, Happy Holidays and may your New Year be filled with wonderful opportunities!
Always,
Kami

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

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!

On the road again.....

Yep! It's happened.  I've moved and with said move must now find a new oncologist.  I can honestly say that I'm just peachy with this as my former one refused to utilize the lavage method (which means to wash or flush a cavity with saline solution) in order to get a clear pap.  The last appointment he claimed it was unnecessary, though former tests proved otherwise.  And thus, I was without adequate cells to get a clear test result.  Argh!!!!

So I am on the search again.  Luckily this time, I have some friends (thanks cousin!) who know people.  I shall soon be traipsing down to the University of Utah (Go Utes!) to get my insides scraped in hopes that I finally get a clear reading on where I stand.  I should still be on the 3 month test rotation, but the rapid change in circumstances has kept me from keeping my calendar as I should.  I really do want that 5 year title of SURVIVOR!!

In the meantime- I will again be calling my insurance company to find out their procedure and re-acquainting myself with said protocol so that I don't get caught unawares by the medical/insurance industry.

Hopefully everyone reading has had their yearly or has it scheduled.  It's a must my friends.  If we don't take care of ourselves....who will?!

All my love,
Kami

By way of updates....

Hello everyone!! I bet you thought I'd fallen off the planet, right?  Thankfully this is not what happened.  I've been working through transitioning from one insurance to another and now am set for my annual duck walk.
On February 25th I'll once again find myself in the stirrups awaiting inspection.  I'm not exactly running towards that date, by any means, but it is nice to make sure that all is well in the southern hemisphere.
With that being said, I will definitely make sure to post results and the likes when they come in.  In the meantime, I say we all focus on the lovely weather (or at least it is lovely here in Arizona) and find someone to make smile in the upcoming days.
Always - Kami

It's Working

Hi everyone! It's been a few months since my last crazy post, and all is well.  I have been able to meet with a counselor/therapist a couple of times now and so have my boys so we are working on finding a new normal. I can't say enough about the level of love, and consideration that we've been shown by friends, family and the community that we live in.

Who would have ever thought that this would be our lives, even just two years ago?

To get back to our cervical friends, I was supposed to have a follow-up on June 3rd, but found myself very agitated with my insurance company (again and again) and so I went shopping in the Marketplace and found new insurance.  It's pretty good stuff, but I haven't had enough time to sit down and work out if my oncologist is covered, and how to primary care physician...blah blah blah.  In short, I'm still working out the kinks in my new insurance and then it will all change again.

I got a job! I'm working at the school where my kids go- which is a fabulous place to be, and my insurance will change yet again in July.  It will be even better insurance and so I wait.  I plan to get my follow-up sometime in August and celebrate yet another milestone of cancer free cells.  I promise to remind the dingbatty doctor that I need to have my tunnel flushed with some saline goodness prior to the scrap-a-thon. Woohoo! It's a party.

Something to also look out for if this is a situation that you've found yourself in.  If you've lost your partner in life, and the option of intercourse three times a week is suddenly slammed shut; be diligent with the dialator. If you're not, things will begin to scar shut and when you do remember that it may be important down the -road to have that open....well.....it could get pretty painful.  SO....dialate away, because you're worth the extra time spent to have all openings in their proper form.

My boys are well.  The two oldest are currently in Moab with their Auntie, after getting to spend two nights at their other Auntie's house.  They are adventurous animals.  My youngest is here with me and we're doing all that we can to make the most of our one on one time.  Thank you for the prayers, the cheers, and the checking in to see how things are going.  I am grateful.  Always.

Much love,
Kami

Again and Again

It's been a bit of time.  Probably not enough, but a bit is better than time standing still; I suppose.

I had another check-up on February 26th and again Dr. B didn't get enough tissue on his swab to come to a conclusion about where I stand.  He's not worried.  So, I'm not worried.  His assistant did call to let me know that she's putting a note in my file that states that I need to have my area flooded with saline prior to the swab being taken so that more tissue can be scrapped.  From what I understand, they haven't been able to scrape through the radiated tissue for a clean sample that would come back with information rather than just abnormal.  All radiated tissue comes up abnormal.  I already knew I was abnormal.  It's kind of a hobby of mine.

Dr. B was not aware that Coach had passed away and asked where he was that morning.  Oddly enough I had promised Dr. B chocolate at the previous visit and instead of answering right away I replied that I had brought chocolate, as was my end of the bargain.  He just looked at me as I attempted to hand him a sparkly purple bag filled with Hershey's Hugs and Kisses.  So I let him know that Coach had suffered a major heart attack in October and was not going to make it to any more appointments.  Then I started to cry.

The human experience is a tricky thing.  I have now been able to make it through days without crying.  Only days.  I look forward to the time when I can say that I make it through weeks.  Not because I'm not madly in love with that Coach of mine, but because I'm hoping with time these pauses and reactions won't take my breath away. Because they do.  Running into people who aren't aware that Coach has passed away still adds to that scream trapped in my throat.  I'm afraid for the next lifetime there will always be a scream trapped in my throat.  It's the one that never quite made it out the morning of October 8th.  Oftentimes I can swallow it down, but there have been a few surprised faces that I find allow that scream to bubble up.  Thankfully it ends up coming out like an awkward laugh; not quite hysteria, but odd enough that the other person stares.  Then they feel embarrassed, and I find myself comforting them.  This was the case with Dr. B.  He kept apologizing and I kept telling him not to worry, it was okay (even though none of this is okay).

So, long story short: still no results on my tests.  Each day keeps coming and going.  I am still grateful for my happily, ever, after.  I still long for my best friend.

Happy days are ahead.  I know it.

Lost in Transition

There's really no easy way to talk about any of this.  I feel a need to at least let everyone know that I did have my check-up last August, and the Dr. didn't get enough sample on his pap swab to do anyone a bit of good, but I did get a bill for it. Ha!

I have another check-up in February, where I'll be sure to let Dr. B know that he needs to scrape extra hard to make sure we get what we need. (winky winky).  This is a bit tricky as it will be the first doctor's visit with Dr. B that my husband wasn't with me.

I miss him.

A lot.

Moving forward, and hating every single step. Thankfully I have three wonderful reasons to keep moving forward, at least until I like it a little bit.

Still grateful for what I know to be true.  Thankful for family and friends who continue to love me, warts and all.  Thankful for three little boys who pray for me every morning and night.  I am thankful.  Tired and weary, but thankful.

Much love,
Kami

My Coach.....

This is him.  The man I met and then married nearly 14 years ago.  He knew all of my secrets, and loved me anyway.  He kept my heart safe and my life lovely.  He gave me three beautiful boys who are the light of my world.  He has been my everything and will continue to be until I see him again.

Coach was called back to his Heavenly Father on October 8th.  Some say it was a heart attack, others think it was congestive heart failure, the results of the autopsy are still pending.  You would think with all the medical whatnot we've been hurdling this past year, that I would be more patient with the process; I'm not.  I would like to now why he's not here with me right now- at least the physical reason.

In my heart I know that it was his time.  What does that even mean?  I truly believe that we will never live shorter or longer than our appointed time on this Earth.  A loving Heavenly Father watches over each of us and it is in His hands that we rest.

I miss him.  Desperately.

I'll probably write more down the pike, but I wanted you all to know why it's been so quiet lately.  I'm a bit lost without my best friend.  I'm also very hopeful that peace will come.

~Kami

How much do YOU know.......

about Mesothelioma?.....

Tomorrow (September 26th) is Mesothelioma Awareness Day.  I was contacted by a delightful woman named Emmy who reached out to me, asking me to share her message about Mesothelioma.  Before I read her article, I knew very little.  After reading her article, I now know that I could be at risk for this type of cancer, and not to be too crazy about it...but you could be at risk too!  Knowledge is most definitely power, and she, along with myself, want you to be as powerful as you can be about Mesothelioma.

Mesothelioma Awareness Day

Please click on the above link, to find out more about this dangerous cancer.  Lets work together to help Emmy spread her message.

The Strong Silent Type

It's been awhile.  I admit that I've been avoiding this blog; not because I don't love the people that read it. That's not it at all.  Every time I end up here it makes me reflect, and I'm still living in the fog that comes post-treatment & recovery.  It's a lovely place.

The Summer has come and gone and many adventures were had.  I learned to boogie board in California, road-tripped cross country, headed to see my family up North, relaxed, got sick, and lived.  So, there are many reasons why I've been silent.  Many good reasons.

I've had two follow-ups since last I wrote.  One was in June, with my internal rad doctor, who said things looked good.  The other was with my oncologist just last week, who did a pap (which the results should come in this week), and checked my parts.  He said there was some thickening of that area.  This is primarily due to scarring from the radiation.  I told him that my bladder wants to turn inside/out everytime I use it, and he just laughed.  I wasn't being funny.  This is also a fabulous side-effect of the radiation and will probably be what it is for the rest of my life.  Otherwise, he said I looked good.  I did get chastised for not coming to see him more (wipe tear from eye here), and I promised to bring him chocolates next time.  Sheesh! Doctors can be so needy sometimes.  I've been scheduled for another follow-up in December.  Woohoo! He did let me know that re-occurance of cervical cancer typically happens within two years post-treatment.  That was something I could have lived without knowing, but I guess knowledge is still power.  I secretly think he's trying to scare me into seeing him more often.  He's forgotten that I don't scare easily anymore.

Most of my cancer fighting heroes are currently doing great! Tristan is back at school, as is Ashley.  They are returning to a semblance of normal and still fill my life with strength and awe.

Unfortunately, I learned this weekend that one of my chemo partners and the most optimistic man I've ever met, lost his battle with lung/brain cancer.  He would have celebrated his 20th year as the voice of the football team that Coach is over.  My heart aches for his family and the community who's lives he has touched for so long.  I was blessed to share a chair next to his a couple of times and we talked about football, life, kids, the strength of being positive, and how best to keep moving forward.  The world was brighter with him in it, and now heaven is exploding with color!

I apologize for the silence, but not for the life I'm living.  I am still grateful every day for the strong men and women who have changed who I am, and continue to make a positive impact on the world.  I've found out that two friends of mine are now fighting their own battles - and would love it if you would send an extra prayer their direction.  I'll give more details as I feel they would be okay with.  For now, just know that they are both really strong, committed and determined souls who will give it all they've got.

Thank you. Always.

~Kami

Energy!!.....Here Energy!!!

When all of this began nearly 9 months ago, I was tired a lot.  I thought that it was because of our recent move and the crazy motion that three boys always are in.  Turned out, I had cancer.

Fast forward 9 months, past the treatment and the roller-coaster ride that is knowledge and education.  I've finished with everything and we're 5 months past my declaration of a cancer free body- but I still can't keep up.

I know I've already written about my 'new normal,' but I think I may have lied about accepting it.  Actually, I'm pretty sure I did.  Don't get me wrong, when I wrote it I felt fairly confident that I could accept it.  That I would be able to, in the long run, just be content with the fact that I was breathing.....but......

I'm not.

I wake up each morning with a mental list of things I want to accomplish and by 10 a.m., I'm beat.  Still, I push through and force myself to stay awake and do the things that Moms-at-Home do: laundry, cleaning, playing with the last remaining boy, clean some more, figure out dinner, visit with friends, help others, be happy, clean, cook dinner.....you get the idea.

Tonight as I'm writing this: I. Am. Exhausted.  Mentally, physically, emotionally, nearly spiritually (but not quite).  I'm dead tired and I feel like dead weight.  I don't get nearly the same amount of things done that I used to and I find that I'm angry all of the time.  Pure anger.

I'm not sure if that's the lull of the hormones in my body, or my mental exhaustion catching up with me, but I find myself sharing waaaay too much; snapping waaaay too often; and trying really hard to find more patience with the world around me, when I really need to be more patient with myself.

I think the Kami of 2 years ago is dead.  There I said it.  I really think she is.  Perhaps we should have a funeral.  I don't know.  It's so hard not to compare yourself to others.  I see other survivors who have been through far worse than I ever will and they're out running around, doing marathons, hiking, biking...living- and I just can't get there.  I'm very much aggravated about it.

What's a girl to do?  The last time I used the bathroom, nothing burned per se, but I feel like my bladder is trying to make a break for it.  At any given time I feel like it's going to peel backwards out of my nether region and take off running for freedom.  No joke.

I'm currently working of finding a solution to my health insurance conundrum so that I can go to some follow-up visits.  Right now that's not feasible.  I may be angry about that as well, who knows?

So many things wrapped up into life.  I have a question for you: What do you do when you're angry, to find your center again?  What gets you going when you're just too tired to go?  Feel free to answer me in anyway you like!!

Thank you for reading and for journeying on with me! ~Kami

The Warrior Princess I Know.......

Hey everyone.

Tonight, I feel a need to share with you the story of my friend and her family.  When Coach and I lived in Illinois we were very blessed to make friends with loads of wonderful people and characters.  There was a wonderful woman that I instantly became drawn to.  She became a beacon of kindness in a strange, new place for me. She was bright, vibrant, outgoing, warm, compassionate and had beautiful daughters!!  She is the mighty Kimberly.

We all ended up moving within almost of year of each other.  She and her daughters trekked further West than Coach and I and ended up in a beautiful State with beautiful lives.  Coach and I ended up in Arizona and are learning to find the beauty in the stark contrasts of each season.

Prior to our move in 2012, we learned that Kimberly's oldest daughter, Ashley, was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia. What began as a nosebleed, that wouldn't stop, became an uphill fight that she has endured with wit and grace.

The Beautiful Ashley

At the time of diagnosis, Ashley was enrolled in college and had to withdraw so that she could get her game face on and get busy kicking leukemia's trash!!  She has been battling for more than a year now.  She has remained steadfast and taken this cancer by storm. 

I can't say enough good things about this family.  They are strong, they are centered, they are each other's biggest cheerleaders and they embraced my family when we were so new to the world of college coaching- even though there was no reason to do so: other than they are good people.

Digging out of our own hole, with A LOT of help from our friends, has taught me the value of community and reaching out.  So tonight, that's what I'm doing.  Coach and I are still not in the best of positions to give gobs of money, but we're helping as best we can, and that is the point.  If you can, please help.  If you're not in a position to give financially, please consider adding Ashley & her family to your prayers.  Every whispered plea, on their behalf, will do much to lift and sustain them through.

I am confident that much good can com from all of us pulling together and doing what we can to make this world a better place; we can start by embracing the fighters.  Ashley's mother introduced me to the title of Warrior Princess and it's one that I wear with pride; knowing full well that Ashley wears it with much strength.  She is my hero.

Details about Ashley and her family can be found here:

A.L.L. in for Ashley

Keep up the FIGHT Ashley!! I love you & your fabulous family!!

~Kami 

There is Always Hope.

I'm dedicating this post to Boston.

I can say without a doubt, that millions of people awoke yesterday without even an inkling of what was about to unfold in their day.  I know that I did.

I had spent the weekend surprising a handful of people in Illinois, to thank them for giving me something to hope for.  They pulled me out of the dumps with pictures and cards, with donations and shout outs- essentially the were a part of a mass that helped in lifting me up when I couldn't lift myself.

The faces were priceless.  The reactions even more amazing.  It was all that I hoped it would be and still I missed getting to see many of those that were my cheerleaders from afar.  For them, I'm terribly sorry.  I did all that my body would allow and still, there weren't enough hours in the day.

I was able to bring the kiddos in this area a touch of AZ, with suckers that had scorpions inside of them.  While most preferred the ones filled with bubble-gum, others took the challenge and ate those darn scorpions right in front of me.  Whoa!!

The brown tid-bit in his left hand is part of the scorpion's body hanging out and yes, he did POP that thing in his mouth and chew away.  What a guy!!  It was a great trip and I left for the airport Monday morning feeling charged and ready to go (although my body wanted to lay down and die on the sidewalk- poor thing, I hope it catches up with my brain soon!).

Coach and I drove to St. Louis with a sense of peace and happiness.  We listened to a CD all the way back to Lambert airport and while sitting and waiting for the plane to arrive, we watched "The Justin Timberlake Experience" on CNN.  There was no talk of Boston, there was not discussion of the marathon that was taking place, it was just another day at the airport.

Coach's dad was the first one to mention it on the way back home after he had picked us up.  I listened and wondered what in the world would possess an individual to destroy someone else's happiness like that?  The ultimate victim being an 8 year old.  What kind of coward does something like that?  What kind of darkness has to totally engulf an individual to twist their mind into thinking that's a wonderful idea that will create change?  That's what it is, darkness.

Thankfully, there cannot be darkness without light.  It's just not possible.  Everything has an opposite that exudes hope and so last night I found one that spoke to me:

A friend of mine posted this on Facebook and I couldn't agree more with the sentiment.  Already this morning there are pictures posted of soldiers in Afghanistan running their own 5K in honor of the Boston Marathon victims.  There is a movement for anyone who has ever run in any sort of a contest to wear their shirts, or if they've never run then to wear something yellow.

When I was going through my bout of darkness, there was always light- I just had to look for it.

So today, I'm encouraging the same.  Look for the helpers.  Look for the light.  Find the phoenix of hope that always rises out of these devastating moments.  I'm off to change into my bright yellow running t-shirt from a 5K that I ran in 2 Summers ago and hopefully give off some elements of hope on a day that could otherwise be filled with darkness.

Choose to be the light. ~ Kami

Phew!!

I received in the mail yesterday, an answer to prayers.  I did.  Really.

In my small, silver, keyed box was the long awaited check that would bring us one step closer to leaving this nightmare behind.  The insurance company had overpaid one medical institution and said Cancer center was sending me a reimbursement check that would cover the costs of the other medical institution that hadn't received a penny.

Hallelujah!! Say it with me now...... Hal-le-lu-jah! Amen!

It came in the morning, and by the afternoon was tucked neatly in my checking account.  My bank has that 24 hour policy on out of state checks and so last night was like Christmas Eve for me.  I laid awake nearly all night so excited to be done with this stage of the game.

Let's pause for a moment.

I know that I have been blessed every step of this trial.  Every. Single. Step.

There was that initial few weeks of panic as the bills kept rolling in, and yet every time I would seek guidance about what to do, the answer was always simple: Just Wait.

If you know me, that is near to impossible for me to do.  I'm a "take action" kind of girl! I want answers, I need results, and constant forward motion is my companion.  I require this.  If I sit too long, I have this fear that life will leave me behind; so waiting these past few months has been much like a weight training class....for the brain.  I think my brain is now BULGING with patient muscles.  Now that's a funny picture that I wish I could find an image that coincides with the one in my brain!!

Finally the morning dawned, and I jumped out of bed! Literally.

I came downstairs and began the long task of going through my cancer bill spreadsheet, my pile of bills, and my checkbook, not to mention our household budget- to document each check written, each bill paid & account, and how this would coincide with our household account.

14 checks later.......

Writer's cramp!! But hey, I'll take it.  I ran out of stamps before I ran out of bills.  My husband asked me why I didn't just pay them online.  I will tell you why....I want a paper trail.  I no longer want to be hounded by collectors, and well-meaning medical bill personnel.  I want that check to be taken into their sweet hands, stamped as paid, and then sent back to my bank stating that I've met my part of the commitment.

Freedom is sweet.  Freedom from medical bills even sweeter.  Freedom from this nightmare will be the sweetest of all, and we are mere months away from a life re-set; living like none of this ever happened, but being that much more vigilant with my health.

Thank you for following in this journey through madness.  Thank you for the words of encouragement and the slaps upside the head of reason.  I've needed both of those and am forever grateful for the new friends I've made along the way.

Chin up, things are only getting better!! ~ Kami

PS- Things are happening biologically to me that I am just not ready to talk about.  Perhaps when I have a grip on what these things COULD be, I'll be less mysterious and more able to discuss them.  Until then, let's have a dance party and celebrate this part of it! Oh yeah baby!!

4 Months Since....

....my last treatment.

November 9th was the date of my last internal radiation treatment.  That marked the last treatment I hope I ever have to have.  I'm not super confident that everything is mending like it's supposed to, ie I still can't digest leafy greens and red meat, without quite a bit of burning and discomfort, but I'll take what I have versus what it could have been, right?

I made it through nearly 2 days without saying the 'C' word.  That was kind of nice.

 Although, in this day and age you hear the word ALL. THE. TIME. Even if you're not saying it yourself.  Someone you know is fighting, or it's a friend of a friend.  Someone is always fighting.  It's those people that we need it always keep in our thoughts and prayers.

I recently found out that the father of one of my friend's is battling cancer.  It's a terrible, craptastical kind, which I won't go into detail about.  My initial reaction was numbness, followed by anger, quickly followed by gut wrenching sorrow.  This part of life is not fair.  I'm praying each night for a miracle, because Dads are important and no one should ever be without a Dad.  No one.

In another vein, my family's goal to achieve 2,013 random acts of kindness keeps getting curtailed.  It gets super tricky to think of random acts that don't involve giving away money (mostly because I don't have any to give away, but if I did...I completely would! I wish I had some to give away, ::sheesh::).  Like my 2nd kiddo always says, "Well, anywho...." I've decided that rather than count each one off, I will pray for opportunities to help someone.  One day, it was talking to a baby in a shopping cart, while her mother attempted to find the right juice for the kiddos.  Said baby was screamin' up a storm when I strolled by with my cart, and G. I stopped, poked her in the tummy and made a toot noise.  That caught her by surprise and she hiccuped for a bit, until her Mom came over to see what had calmed the kiddo.  She thanked me, and said that she was nearly at the end of her rope.  I quipped, "Well tie a knot and hang on sister.  They get more fun down the line, but you sure miss the little toothless grins and the chubby hands that only want you!" She agreed and down the aisle I went.

That's when it hit me.  Random acts are that simple.  Letting someone pull in front of you that seems in a big hurry, picking up a dropped item and returning it to the owner, smiling at the busy checkout clerk and asking how their day is going.....all random, all kind.  You get the idea.

So my little family and me, we're plugging along.  So far we're on schedule to meet our goal.  This requires that each member find one act per day, and one of us gets to do two.  Since setting this challenge, we've decided that these acts CAN'T include money, because that's super easy- although I've already broken it a few times to help out cute kiddos buying their first something with their own money, and pitching in a few dollars to someone who needed it.  I can't help it.

Here's to a world without Cancer, and a lifetime of Random Acts of Kindness.

I'm off to go and get G and take him to the potty before tucking him in.  I think that should count as a random act, because he's currently sleeping atop Coach....and I know he drank a large glass of water before slipping into slumber act.  I could leave him, but they'd both wake up swimming.

Much love~ Kami

The New Normal

Today I woke up, and did laundry.

Wow! Right? Yep, it really did.  I did laundry and made cookies with G.  We worked on the letters in his name, and mosied on down the road to literacy.  It's been a good day.

I only spent a few hours on the phone tracking down claims and asking medical personnel to resubmit their claims that were processed wrong.  I got a wonderful FB message from a dear friend that made me jump for joy some more.

It's been an outstanding day.

I've also felt the loss of a family that I don't even know.  Their story is documented on Facebook and is called Mitchell's Journey.  I was keyed into this family through a friend of mine, who's son has recently beaten Ewings Sarcoma.  It took a bit of his leg,  but he triumphed with more heart than I've ever seen before.  He leaves me feeling uplifted and strengthened.  Mitchell's story has also done this for me.  Mitchell fought hard, and then left this world a better place.  I've sobbed all weekend for this boy and his sweet family.  I've never met them.  In all reality, I've never met Tristan either, but I love them each as though they are mine.....because they have hearts of warriors and allowed us all to peek into their fight.  They are such a true definition of fighter and living every breath of every moment. They are what life is about.

Life is give and take.  We are constantly reminded of this.

I'm grateful that I've been given more years with my kids.  That they are healthy, and that we can all rejoice in the destruction of the dark cloud that loomed for so long.

It's funny though......

I find myself wondering if there will ever be a day when I don't have to talk about cancer anymore.  Probably not.  How can we live in this world where every moment, someone else is learning a new hard truth, and someone else's family is starting their journey on this terrible path?

The new normal is clearer and more distinct.  Reality hit us hard, and I am grateful for the reminder of how fragile this existence really is.  Today is a good day to hug those that you love just a bit tighter, to call those that you've lost contact with, just to remind them of the difference they've made in your life; to forgive someone whom you thought you never could.

My new normal is exciting, and scary and breathtaking.  It's a better perspective than I would have had otherwise.  So for now, I'm off to fold some underwear and attempt to sneak up on my 4 year old- just to hear him scream and giggle like mad.  It's a new normal, and it's a good one. ~Kami

What now?

The tests came back negative.  I'm officially cancer free.

What now?

I've learned there is fall out from every choice that we make.  While I was going through treatment I made the choice to be as strong as I could be.  This includes attempting as much as I could to avoid looking weak. It seems that I've alienated some people, and made others feel as though I had robbed them of a chance to  help me.

That's on me.

When you're in survival mode, you do what you have to do.  I've never been really good at asking for help and allowing others into the circle that would mean I would have to break down in front of them.  I've learned a lot from this experience.  There are people out there that would like nothing more than to uplift and sustain others.  They want to come to the rescue and feel hurt when that doesn't happen.

All I can say is that I wanted to make it through this with some semblance of dignity.  Something that was still me.  Is it pride? Probably.  I've learned from beginning to end that pride has no place in recovery, but may sometimes be all that you have when you're barely hanging on.  I'll apologize for not letting everyone in, but I won't apologize for keeping something to rebuild on.  I can't.

In the days that have followed the announcement, bills have flooded in.  I'll try to explain what's happened as best I can, but it might be a bit murky.

On August 6th, I was diagnosed with cervical cancer.  The staging came later, but since I had only been on my new insurance for a month, the insurance company felt it prudent to commence a medical review.  It's good business.  It just stinks for those of use who are honest and need treatment.  This is again a case of the few ruining it for the many.

The medical review commenced, and in the meantime precertifications for treatments were being issued.  I received treatment from two places: Arizona Oncology (brachy therapy) and Cancer Treatment Services of Arizona (radiation & chemo-therapy).  All treatments were pre-approved.  However, the CTSA took one look at my LARGE deductible and requested that I meet the deductible before I could begin treatment officially.  This is where I screwed up.

I trusted the clinic to have my best interests in mind.  I trusted.  I don't fault at all the people that work there. I fault my misunderstanding of the situation and my ignorance.  When a medical facility asks you to pay $11,000 up front, it should bother you.  It should!  At the time, I only wanted to get started and get finished. So I gave them the money.  I only had the money because so many people had rallied to my cause.  We were able to put a large amount down via a check, and then put the rest on credit cards.  I paid the deductible.

The facility pulled from that money while I was having treatment to cover the costs.  What didn't happen and should of......the insurance was never contacted and told that the deductible had been met.

While the medical review was ongoing, all the claims that were being filed with the insurance were sitting in a holding pattern.  Waiting.  When the review was released in December, most of the claims that had been sitting were sent back as patient owing.  This means that I've been getting bills in the mail for VERY LARGE AMOUNTS, due to the order that claims were received.  What is boils down to is that the CTSA claims came in after a lot of the Arizona Oncology claims, even though I had met the deductible, it was still coming up as I was owing.  At this point I still have 87 claims being processed. Urp!!

I'm learning.  I talk on the phone at least three to four times a week.  The time limits of these phone calls have gone from 15 minutes to 2 and a half hours, trying to get it all figured out.  I have lab bills with large amounts owing, and a credit card still to pay off.  I'm confident this will all get resolved, it's just very...um....aggravating.

In hindsight I should have held onto that large deductible amount.  This is what I was educated on by my sister.  If I was feeling better, I would have had better reasoning, and then requested that the facility accept a co-pay or down payment and then send the rest through insurance.  It should ALWAYS be processed through insurance first.  Makes sense now....makes sense now that I can keep my eyes open for longer than a few hours.  I'm just grateful it makes sense at all.

I have my sister to thank for that.  When the first LARGE bill hit, I fell into a dark hole.  I felt like I had tanked my family once again.  Financial hardship has dogged us throughout our lives and it's typically due to choices I've made.  That's a heavy burden.  After I had swallowed a large chunk of my pride, I called my Sister A to find out if she knew anything about this mess.   Turns out SHE DOES! Insurance is her passion and she's very good at finding out the ins and outs of how the system works.  So I've called everyone and keep letting them know what's going on.  There is an end to this, I know there is.

In the meantime, if you know of anyone that needs a freelance writer, or of anyone hiring positions that can be worked from home (since I still have one kiddo here at home during the day), please let me know.  I'm confident that all will work out- I just like to be able to help.

Much love, and brighter tomorrows~Kami

What I've Learned about Recovery

I haven't posted for awhile because I keep hoping that this moment in time is behind me.  It's not.  I don't wear my own cancer fighting shirts, because I refuse to accept that this really happened to me.  Now that I'm on the recovery end of it, I don't really want to think about how I got here.

When I was told it would take a good 6 months to get back to some semblance of 'normal' I laughed inside my head.  Yes, I know this is a sign of insanity, but I did scoff at the very idea that if treatment only took 8 weeks, then recovery should take the same amount of time, right?

Wrong.  Wrong. Wrong. Wrong. Wrong.

I feel trapped inside this broken body that won't do what I want.  Trapped, I tell you.  Last week I went walking for about 2 miles with some friend of mine.  I refused to quit after one, although I should have.  The next two days; my hips, legs, buttocks, back, and head hurt.  If I sit for too long in a car, say any longer than 30 minutes, I have a hard time getting my legs to straighten out.  What the what?!  It's true! I go to get out of my car, and have to brace my hands on the door to make sure my legs won't buckle before I put my full weight on them.  In the words of my youngest son, "I'm jacked up."

What a go-gettin' girl to do?

Find grace.

Simple answer right? I am learning not to be afraid to say, "No, I can't do that today."  It's hard to say that.  I WANT to do everything that is put in my path.  I want to finish what I start, be a girl of my word, and help those who have helped me out.  I'm not well yet.  I want to desperately to be well.

I think I look well.

Coach doesn't think I do- at least not always.

It's true.  You can tell when I've pushed too hard.  My rosy cheeks are nowhere to be found, and I look like a zombie.  I drag my feet up my stairs to my bed, and I just cry then crash.  Crying is mandatory.  I have to mourn what I should be, and then crash into unconsciousness.

I want to give a rah-rah effort because there are many who have fought longer and harder than I ever will, but today I don't have it in me.  So I'm off to snuggle up next to G and fall asleep while he battles the world of Skylanders before his older brothers get home and tell him to relinquish control.  Perhaps I should do a bit of that....relinquish control.  After-all, I have always been in good hands. ~Kami