Sunday, December 30, 2012

Another Night Before.....

Well folks, we're here.  I didn't think I'd make it.  Yes, my bum still burns, but you learn to deal with these things when they become commonplace.  Luckily that is all that keeps me down, at times.  I have single handedly taken down Christmas this week, played video games with the boys, loved my family up some more, and enjoyed not cleaning every waking minute.  It has been a good month for recovery.

Tomorrow marks the epic PET/CT scan.  This will determine whether or not any more cancer will be found in my cervix, or abdominal area at all.  I'd be lying to say I wasn't a bit scared.  Worst case scenario they find a bit more, and it's more rounds of chemo after coming up with another $11,000.  Best case scenario, I begin year one of 5 years to survivor-ship.  I've heard you're not a survivor until you've passed the 5 year mark post-diagnosis.  I'm rooting for the best case, and prepping for the worst.  I was taught well by my parents.

K, my second kiddo, prays for me every night.  He says, "Please bless that Mom's cancer will be gone." He says it so easily, with so much faith....that I believe because he believes.  I have remarkable children.  They have gone through hell these past months.  They have seen the best and worst of what the human body can handle and they've taken it in stride.  The other night I was putting together this Lego Transformer with K, and he said to me; out of the blue, "I'm glad you're my Mom."  I am too.

Pre-scan I was told to eat a high protein diet.  Stay clear of sugar and carbs, and drink plenty of water.  I didn't eat until this evening, but had BBQ'd chicken and scrambled eggs.  I've been drinking water, but didn't want to have to worry about bathroom issues during the scan tomorrow.  I just never know when a potty moment may occur, and I would hate to have to start a 45 min. scan all over again, just 'cause I had to go!

Starting at midnight I'm on a water only diet.  Fortunately I can still take my meds, because the anti-anxiety/nausea meds help me calm down enough to sleep well.  I'm still a bit jazzed about all that will be determined tomorrow.

After the scan, I'm heading over to the Cancer Treatment Center to have bloodwork done, prior to my doctor's visit on Wednesday.  I look forward to talk with Dr. S, with Coach there.  I'm not sure they've ever met.  Should be interesting.

Thank you for praying for me, rallying to my cause, sending notes of inspiration, getting mad at me when you needed to, and most of all for being my friend through the best and worst of all of this.  Keep your fingers crossed and a prayer in your heart that this is over tomorrow.

All my love~Kami

Saturday, December 22, 2012

A Gift I Can't Give.....

Recently my youngest has been consumed with being an older brother.  He has a cousin close to his age, whose mother just had a beautiful, baby boy; and G thinks he should get one too.  This has precipitated many conversations as to why that just isn't possible for me.

What has healed to a dull ache, is still just a dull ache.  I would LOVE nothing more than to be able to give him that wonderful gift.  I'm in such a great place these days.  We have no intention of moving anytime soon, we love our home, love our neighborhood, love our church, are happy being close to family.  It really would be a great time to add the final caboose to our family, and yet......

Rather than focus on what I can't do; I'm choosing to surround myself with what I can.

1. I can love my three children more, because I know they are all that I have.

2. I can love other people's children more as well, because children who were once taken for granted, now are such a gift to me.

3. I can feel blessed that I was able to have the three boys that I did, with minimal complications.

4. I can feel good knowing that the job I do as a Mother is a pretty important one, and focus on that.

Today G told me he couldn't love me anymore because I can't make him a big brother.  I know this isn't true, because lets me honest...what's not to love, right? Ha ha!  In time I think he'll be all right, but in the meantime I will just do a better job taking him around other people's babies and letting him soak up their joy.

Good times & Happy thoughts~Kami

Thursday, December 13, 2012

Where I've Been.....

I won't apologize for actually living over the past few days.  I've had good days and bad days, fun days, and tiring days, but I am living and I feel really good for being able to do that.

I've had people from time to time tell me that I look tired or stressed.  Sometimes I feel fine, but the body is weary.  Obviously I wear my mental condition on my sleeve. I wish that I could change that, but after 34 years of life, I'm pretty sure it's ingrained at this point.  If I look tired, I probably am which is how healing looks at this point.

Some wonderful things that I've been a small part of lately are: a Women's Conference for our Church where I helped make cupcakes and cute cookies, then got to speak.  That was really fun and uplifting for me.  I was also called to serve in our children's group, which will also be wonderful!  We've decorated for Christmas, done some shopping, and fit a doctor's visit in there too.

The latest visit was with my brachy therapy physician, Dr. L.  What Dr. B2 found the week before, was not to be found at this visit.  He said that all felt normal and that I was continuing to heal.  I felt massive amounts of relief when he said that all was well! He then did the unthinkable and opted for a rectal exam. ::shudder:: Needless to say there were tears, and I am back to square one with the bleeding in that area.  What can you do?  I can only confess that I wish I had had a leather strap to bite down on, my cheek took the brunt of the pain and it's hurt for a few days now.

During these days I've also been the recipient of so many lovely cards, and donations.  Thank you to the McCall family who held a drawing for my cause.  They raffled off a beautiful guitar and donated the proceeds to my medical bills.  Coach's cousins also sent wonderful checks our direction to aid with medical bills.  It is really hard to express the gratitude in my heart for so many that have given of themselves, so that we could keep our heads above water.  Thank you, truly.

Wishing you the happiest of Holidays!!! ~Kami

Tuesday, December 4, 2012

The word for today is: wallow

It's probably  nothing, but I can't help but be worried.  Yesterday I have yet another follow-up exam with Dr. B2 in Casa Grande.  We talked about how I'd been feeling and went through basic follow-up questions, then we asked if we could do a pelvic exam.

Again with the spectacular speculum; and onto the show.  He said my cervix was effaced, ha ha! At least I have one right? Then he twisted said speculum again, and again; which I will never understand why he's the only doctor that does that.  Finally the speculum was removed and he performed a manual exam.  While he was working on the area that the tumor was, he paused for a moment and said, "Kami there's a slight bump here still."  I just closed my eyes.

Sometimes if you close your eyes, things disappear.  That's not the case when the doctor is performing an exam on your lower parts, and keeps talking through the attempt to make him and the room disappear.  I had no choice but to open my eyes.  I told him that the PET/CT scan was scheduled for Dec. 17th and that we'd know more then.

He replied that he felt the scan should be moved back further to later December to give the radiation and chemo time to shrink the bump completely.  I was torn in two.  I want this to be done, and for the insurance to pay for the remainder of this treatment follow-up.  I didn't want to wait any further.  So I left the scan where it was and left.

Needless to say, I didn't sleep well last night.  Clearly there is still some cancer hanging out, but I've done all I can right now and just have to wait.  I have myself permission to not get out of my jammies today, and so I didn't.  I then threw myself a slight pity party for the back slide; then I got mad.  I'm mad that anything was found.  I'm mad that I can't be done so that I can stop being tired and get back to being a semi-good mother and wife.  Mad, mad, mad.

As I was attempting to nap this afternoon the thought came to me that I should push the scan back and stop being so hateful over something that is just a slight set-back.  So I called the offices and it was all set up again for December 31st.  Here's hoping the New Year will bring happy results and delightful moments that are cancer-free. ~Kami

Tuesday, November 27, 2012

Funny Occurrences

November 27th  I had another post-treatment follow-up with my chemo doctor.  He is a hoot! Dr. S cracks me up.  I think it's because he is so human.  He says random things, but gets serious when it's necessary.  It's a refreshing change with all the clinically distant encounters I've had throughout this process.

It also helps that I LOVE, LOVE, LOVE the clinic where I have been treated in Casa Grande.  The support staff is so upbeat, and hilarious.  They get my sense of humor and I've only been taken down a notch once (when I went for a walk where I shouldn't have been, with my IV pole- ha ha!).  There's not a single one of them that I dislike, which makes it a joy to go and see everyone for treatment and follow-ups.  I probably spent more time there than I needed to yesterday, just so I could talk to a bunch of those lovely ladies.  It's always a good time.

Miss T was a my partner in crime yesterday as we drove to and fro.  It helps to have company to keep the trip from getting stagnant.  She also helped keep me centered when a friend of mine, who's sat with me during chemo treatments was wheeled in by his family.  He had been diagnosed with stage IV lung cancer a while back and had had chemo treatments and some rad as a way to keep the cancer in check.  He was looking really rough and actually had to go and throw-up while waiting for his rad treatment.  Before they wheeled him back for treatment he let me and Miss T know that his cancer had spread to his brain and they were treating it with radiation now.  I'm not going to make this about me and my reaction, all I ask is that you keep him in your prayers, when you find yourself on your knees.  He is a wonderful guy, and every bit helps.

When I met with Dr. S I found out a little somethin' somethin' about my blood.  I have a disorder, which my baby sister also has called: Beta Thalessemia Minor.  Unless you have a hematologist check your blood panels, it isn't usually caught.  It masks itself as anemia.  I've been told I'm anemic my whole life.  In fact, my RBC (red blood cell) counts were so low when I had baby #3 that I ended up getting a blood transfusion.  At that time, I'm sure I needed it.  I was feeling pretty rough.  However, if you have this blood oddity chances are you've been told your anemic and then put on an iron regiment (like I have).  The only problem is that you can actually be poisoned if this occurs, because you don't need the iron.  It just means that your RBC's produce rapidly but are smaller than normal ones.  So, I don't have to do anything with this, just keep it in mind for the next time I'm told to choke down some iron.

I was also told that my white blood counts are low, which means the chemo is still in my system.  Also, not a big deal.  He checked my backside and let me know that I look like Kim Kardashian. Ha ha ha! Then told me that things were healing right on schedule.

Dr. S then had orders written for the MAGICAL PET/CT scan for December 17th.  Woohoo!!! I sincerely mean that.  WOOHOO!!! This means that I can find out sooner, rather than later, how things have reacted to the treatments.  I'm pretty excited about this.  I want to know that we're good to go.  I want to be able to move forward and not have to look back again.

Monday, November 26, 2012

Baby Steps and a Woohoo!

I've been re-reading the things I've posted lately and whoa! Talk about emotional diarrhea, I'm sorry for the avalanche of emotion and the negative pendulum swing, but if I'm going to honest I guess it's all out there for now.

Today marked another milestone, after treatment ending; my first follow-up.  I haven't seen Dr. B since early September when he mapped out the treatment plan and then called to let me know who was going to be doing what.  He's since then opened a new office and his new digs are pretty sweet.  Very contemporary in the way of decor.  It's nice.

After sitting it the waiting room for a few minutes, I was called back and weight was taken.  Yes, I've lost 10 pounds since this all started, but when I peeked at my chart it still said that with my BMI, I'm overweight.  Bleh.  It's all relative right?  First they said, "don't lose weight."  Now the chart says, "please do." I cannot, obviously, please everyone at the same time.  I talked with the nurse briefly and then was told to don my favorite paper skirt and await inspection.  Okay, not in those terms, but I've been told it so much I'm running out of ways to describe it.  I did inform the nurse that I think I'm going to stop wearing pants to these appointments and just ask for the paper skirt at the front desk.  She raised and eyebrow and didn't laugh. Again all the people and none of the pleasing.

I waited for 15 minutes in the exam room, which normally I wouldn't care, but today I was feeling super anxious.  I haven't been taking the anti-anxiety meds since Thanksgiving, and it leaves me a tad shaky when I'm nervous but I'm holding on okay.  My heart palpitated once or twice and then I would hot flash for a couple of minutes.  Yes, I am a hot mess.  Finally Dr. B made his appearance looking very dapper, as usual. His back-up was a nice female Dr. named....Dr J.  She was quite nice too.

Dr. B asked me how treatment went.  I said it went fine.  He asked me about any bleeding, I informed him of my rear end.  He said it was normal.  He asked me about any pain, again I referred to my rear end and my front end that seems to be re-developing in the sunburn department.  He said it was normal.  He asked me about fatigue.  I said I was pretty wiped out after 2 or 3, again.....I'm normal.  Then Dr. J, who I had just met asked me if I had any dilators.  Again......what is with people I just meet needing to get super personal? For the love lady!!

If you want to know what a dilator is and what I am required to use it for, feel free to google: dilators for cervix.  I want to be able to write about it, but I have to draw the line on something so personal.  What I will say is this: post radiation treatment the inside of the vaginal walls tend to scar together.  Without the painful use of a dilator once per day for 5 to 20 minutes, things down there would not work.  They would scar shut and even a pelvic exam would become impossible.

Nevertheless, I answered in the affirmative and the conversation moved on from there.

Dr. B then had me assume the Yee-haw position and using our favorite speculum, gently took a look at things.  He informed me that I once again have a cervix.

There was a time when I had no cervix at all.  The mass had engulfed the entire thing.  Thanks to the success of the radiation (internal/external) I now had a cervix again.  He did say that things were swollen down there, but that they looked like they were healing well.

When I asked about the 'ring of fire' he said that the effects of the radiation would get better between 6 weeks and should be back to normal about 6 months. I replied that as long as there was hope, I was fine.  We then moved on to the next stage of recovery: scheduling the PET scan.  It is to take place sometime before Christmas.  I'm happy about this for a couple of reasons: 1) I want to see if anything else lights up (or if we took care of all the cancer) and 2) I needed it to be done before January 1st, when my $11,000.00 deductible would reset itself and everything would become out-of-pocket again.


Today is a 

 kind of day.

I will admit that it has taken longer than I thought to bounce back, but like many have said, I need to patient with myself.  Who knows how long I've actually been dealing with this madness and just didn't know it?  So for now, I am optimistic and looking forward to the magic of Christmas and the joy of the season.  Only dreaming of sugar plums and not rings of fire~ Kami

Wednesday, November 21, 2012


I've had some set backs this week as far as pain goes, but am happy to report that I flushed all the narcotic pain-killers down the toilet.  Yes, I know this is bad for the environment, but I had to get them out of my house and away from temptation really fast.  The dilaudid (sp?) was great at sending me to oblivion, but retaliated with a wicked headache as a side effect.  In a moment of sheer crazy pain, I actually forgot that I had already taken one and nearly took another.  Just in time I remembered through my fuzzy brain-matter, and stopped myself.  It scared me pretty bad; and even though the effect of taking two perhaps would have been okay, I'm not fine with any 'what could have beens' lurking around my house.  One flush, and problem solved!  I'm thankful for toilets....yet again. Ha ha!

The recovery back to status quo is slow and ridiculous.  I'm ready to be able to do what I want to do and go where I want to go, and paint/sand/fix what I want to fix, but I've found that by 2:00 p.m. I am ready to pass out because I'm so tired.  Granted it's only been 1 1/2 weeks since the last treatment, but still.  My mind thinks I'm 21, reality says I'm 34, body is screaming that I'm 90.  For the love!!

I was accused today of watching too much T.V., which made me laugh.  I've tried all week to keep moving and doing something productive.  The fact that I was sitting/laying down today and watching Cake Boss on Netflix for 2 hours, was actually outside of the norm as of late.  I would love to be jumping hurdles or running a marathon but my lame old lady body won't let me.  Better yet, I know older ladies who are more active that I am right now.  Sheesh!

I'm feeling super grumpy right now trying to put into words how I'm feeling, which is weird because I originally started this post out as a gratitude post, but then changed it because I feel like a lot of my posts are filled with gratitude and sometimes that can be obnoxious.  I wanted to throw out a quick update and be off, before I got grumpy.  I have no reason to be grumpy.  I'm nearly done with my fight.  I should be happy.  Lame, lame body.........I'm feeling disappointed with the slow climb back.

Gripe, gripe, gripe....complain, complain.  Who wants to read that?

Stay tuned, I promise things will get better.  I think I just need more sleep?  More food?  More time.......

Happy Thanksgiving & Pre-Christmas Joy~Kami

Saturday, November 17, 2012

Booty Crack-a-crack-a-Lackin'?

If you are tired of hearing about my parts, now is the time to walk away.  Because where sunburns occur, peeling must also.  And well, the peeling party has begun!

Yes, this is occurring, but not in an area that is okay to scratch, peel, or reach for when in public.  Yikes! Luckily Benadryl came in handy last night so that I could actually sleep.  After scrubbing the area, to remove excess skin- after bathing- I made the mistake of applying the benadryl cream right to the newly scrubbed and raw area.  Yes, it burns my friends, it burns!!!

However, I'm pleased to report that other areas are no longer on fire, and that is a good, good thing.  I no longer feel like the Firestarter...twisted Firestarter (said in an English accent).  I was able to talk Coach into taking down Fall decorations today and getting out Christmas ones.

That is the upside of my life right now.  Things are getting done.  The flip side of the coin is that come 2:00 every afternoon, I hit the wall.  My eyes start to droop and my body just says, "Nope."  Then I either lay on the couch or walk to the park to watch the kids play through droopy eyelids.  The park is mostly because I'm tired of missing out on my kids' lives. 

Tired, tired, tired.  Slowly things are getting back to normal.  One week free of treatment and excited that things are calming down.  I'm happy that the crazy, strong meds are somewhat a thing of the past.  I will tell you though that I'm still taking the anti-anxiety/anti-nausea medication for two reasons: one, it slows down my digestive tract, and two, it helps calm the demons in my nogging about going places where my potty isn't. Sounds ridiculous, right?

It's really not.  Not in my head.  Because potty time has become so painful and it's really a "crap shoot" (ha ha!!) when that will hit, I hate getting caught somewhere that isn't familiar.  No one likes to scream in a crowded movie theater bathroom.  It makes others uncomfortable. Ya know?  So I'm venturing out a bit at a time, trying to tame the inner-demon and take back the life I used to have.  The medication does help, but I'm tired of having to take that one too, so we'll see what I can do to overcome that issue in the upcoming weeks.

In the meantime, Happy Gratitude Week.  Thanksgiving is a good time to say THANKS for all those things that make life truly wonderful!! Friends, like you; family, like mine; and the moments of joy to be found in each day.  Chin up my friends!! Things are looking pretty good.~Kami

Wednesday, November 14, 2012

Pain-Free Moment

Woohoo!!! I thought I'd take a moment to document the fact that I woke up this morning WITHOUT feeling any pain at all. (Feel free to back-handspring here if you can....I can't due to my fear of falling backwards, but if you can....please do!).  I took one medication last night to help me relax, so I could sleep; I still dreamed I worked in an office, and made banana bread (which I'll be making this morning because the draw was just too much to walk away from), but I slept so great.

This morning when I work up I did the regular systems check that I do before I actually open my eyes and get out of bed.  Basically I flex and relax every muscle in my body to see where we're at for the day.  Guess what?! Nothing hurt.  Hoo AND ray!  These moments don't last for the full day yet, but they have yet to actually begin the day so I'm blogging and inserting all kinds of exclamation points, while I can.

Today I may even venture out and get my hair cut.  Yep, while my hair made it through chemo and the likes of radiation it hasn't made it entirely intact.  Trust me, I'm not boohooing in the least, but it's broken off in quite a lot of places leaving two inch strands all around my head that look super awesome in a wind tunnel while I have a pony tail in place. If I actually do find the cut of my dream, you can get I'm dragging G with me to get it chopped.  I think I just need a change.  What do you think?

While I was feeling super crazy....I thought this one.

Then I had a sane thought and perhaps was thinking this fly-aways would still be super insane, but at least it's shorter, right?

Thank you for indulging me and sharing in the WOOHOO moment.  Each day is something to celebrate, and today I'm doing it in style (as soon as I get that banana bread done.)!

Friday, November 9, 2012

Lines to Finish

I made it to today.  In September, I didn't think I would.  Heck, even Wednesday, I didn't think I would make it to today.  But I did.  Today marks the date of my last cancer treatment.  I was able to enjoy the pleasure of a nurse named Shasta, and Dr. L for one last time today; complete with tubes and paddles.  But I did it.  I survived it.  I did it!

As soon as all medical implements were removed Dr. L informed me that I would be meeting with him on December 10th.  So one finish line crossed, and more to come.  Within the last weeks of November and first two weeks of December I have 4 doctors to meet with.  Dr. B, Dr. B2, Dr. S & Dr. L will all be enjoying me rapier wit for a little longer.  Lucky them.

Now that the moment has passed though, I have to tell you something.  I am weak.  I actually did want to give up.  I did.  In the morning hours of Wednesday into the early afternoon of Thursday; I wanted to be done with all of this.  I hadn't been able to sleep in two days, my body hurt, and the simplest of tasks that you're born knowing how to do was so complicated and terrifying that I would sit in my new prison (the bathroom) and just weep for many agonizing minutes.  When you hurt like that, it's very lonely.  Coach caught me in one of those moments and nearly came apart with the fact that he couldn't take the pain away for me.  He really is a knight in shining armor- I am a lucky girl.

There have been times when using the facilities causes me to scream.  How ridiculous is that? However, I'm aware that my kiddos are near and so I clamp my hands over my mouth and do all that I can to just squeak and not outright scream.  It's hard.  It makes my stomach clench, and my eyes hurt.  It's pretty terrible.

When Coach came home from work on Thursday, G happened to be playing at a friend's house (whose mother is an angel walking this Earth), and I happened to be in the tub silently weeping and wondering what I hadn't done right to have this pain continue as long as it had.  He sat on the edge of the tub, I put my head on his leg and he just listened to me ramble through my tears.  He didn't interrupt, didn't forbid me from saying the things that would cross my mind, didn't make me feel like my feelings were terrible.  He just listened, and then rubbed my back.  Slowly the pieces that I had fallen into began to take shape again; and things didn't look so dark.  A best friend does that for you.

I would like to say that I'm a fighter, but in reality, I'm human.  For two days I teetered in darkness, sleep-deprived and full of pain, and I couldn't see beyond the moment that was eating me alive from the inside out. I look back now on all that I wrote about wanting just to get started, and hating to wait, but to be honest if I knew then what I know now...I would have prolonged this forever.

Today is a much better day.  I'm grateful today that things are over and the healing can truly start to happen.  I've been given advice to take things slowly, but I'm a full speed ahead girl and want to get back to whatever "normal" is.  However,  I realize how greedy that sounds when I know of so many people that are teetering in the abyss that is treatment, and the finish line is so far away.  I wish I was strong like them, because they are so strong and brave.  They fill me with hope.  I look to them on the dark days and realize that they are facing so much and keeping their chins up and showing so much grace.

As I walked out from the Phoenix clinic today, the skies were cloudy, and I was thankful.  The always sunny days here in Arizona become boring.  The cloudy day seemed like a great way to celebrate- change.  Things are changing.  My attitude towards this soreness is changing.  My mantra each moment of doubt becomes- "One day at a time."

I wanted to be honest while I wrote this.  I want people out there who may be facing the same things I have faced to know that it's not easy, however, it is doable.  There will be dark days.  There will be days when you beg to just quit; but if you can keep moving forward your finish line will come.

I'm not celebrating today.  I'm going to wait until my digestive system can handle a trip to the Cheesecake Factory and then I'm going to go and order everything that looks good, take bites of each of it, and then box it all up to take home to enjoy....where the potty will be more cozy.

Thank you for checking on me.  Thank you for rallying to my cause.  Thank you for caring enough about me to forgive me for the weakness, and know that I've picked myself up and am moving forward again.  Cervical cancer is terrible, but it's not the end of the world.  It's curable, it's beatable, and that is exactly what I intend to do with it. More sleep-filled nights and happiness ahead- promise!~Kami

Wednesday, November 7, 2012

Kami on Fire

Monday's brachy appointment turned out to be a battle of wills.  Mentally, I didn't want to go.  I cried, I fought, I took it out on Coach; I didn't want to go.  The mental battle that takes place each day to keep fighting and keep looking toward recovery sometimes wears thin.  I breakdown, others rebuild, and I show up to the next appointment.  Monday was like that.

Thankfully, the appointment went just like I had prayed it would.  The doctor was able to place all the tubes, and paddles with minimal pain; the techs were all geared up and ready to go so I didn't have to wait- laying on the gurney all stuffed like a turkey.  Coach was able to take me, and so when it was finished I was able to walk into the waiting room to his wonderful self and G all smiles and happiness.

The side effects of all the radiation are beginning to manifest more and more each day.  I mentioned earlier that I was peeing fire and pooping glass?  Well times that by 100 now.  I am literally on fire.

This is how I feel, only it would be picture of my nether-parts.  The radiation works from the inside out, much like a microwave and so in order for the radiation to do it's job and then leave, it has to work on my organs and then move outward.  Nothing relieves the burning.  I've tried: hemorrhoid creams, tucks pads, aquaphor, etc.  They all burn and then the burning continues.  I've been prescribed two types of pain medication and all they do is make my mind numb, but my bum still burns.  I sit in a tub, typically after using the bathroom, and soak in some epsom salted water; until the burning intensifies.

I'm now praying for relief.  That's all I have left.  Short of sitting on ice all day long, which wouldn't help my insides that are still burning, or perhaps starving to death so that nothing has to move through my system- I'm praying for relief so that I can sleep, function and continue to be a mother/wife/person.

I'm still happy that my last treatment is on Friday.  Still hopeful and confident that I will hear magical words in the future, and holding onto the hope that I can look forward to Thanksgiving with delight and not fear for what will happen on the south end of a good meal.

Until I find relief~Kami Burning.

Saturday, November 3, 2012

Don't Break my Parts, My Achy Brachy Parts......

With one more Brachy (pronounced Breaky) out of the way, I feel like the countdown can officially begin.  Friday brought about my 3rd brachy treatment out of 5, and while it was extremely is over.

Dr. L decided to let a med student (without my permission) attempt to remove the brachy muy bueno.  It ended up taking a part of my anatomy with it and I did scream.  Yes, yes I did.  Dr. L asked if I had been pinched.  I replied that I had been raked.  He drew air in between his teeth.  I asked him why the student was touching anything without my consent anyway.  He looked sheepish.  End of story.  Brachy is probably physically worse than anything else.  Chemo is mentally exhausting.  Radiation just burns my bottom.

I'm am excited and looking forward to no chemo this week, and the opportunity to perhaps taste my food later this week.  Baby steps, my friends, baby steps.

I was asked a few weeks ago to talk about how I felt before this all began; if I knew something was wrong and what, if any were the warning signs.  Looking back on it the biggest indicator that something wasn't right was the level of fatigue I felt.  Please know that when this all started I was selling a house, moving, and unpacking a new house.  You're bound to feel a bit tired with all that going on.  For me, the level was extreme.  To the point that I was having to take a nap in the middle of the day........super weird for this lady, I promise ya.

The other signs that led me to ultimately be checked out for my annual visit were: pain during intercourse, blood following intercourse, and pain on my lower left pelvic area.  It wasn't all the time.  It would come and then go, but it was happening enough toward the end that I started to get worried.

Looking back now, I wish I would have done what everyone tells you to do and had my annual every year.  What's the big deal really? Now that my nether regions have been seen by 5 male doctors and one female in the course of 2 months, what was I waiting for?

Looking forward I just have to endure 2 more brachy treatments, and toasted body parts.  No big deal right?  At some point I'm sure my body will begin to heal and I'll be back terrorizing the world again.  This week I was super thankful for Coach's Mom.  She came out and cleaned bathrooms, and vacuumed as well as played with G.  She also took me to my Brachy appointment and played tic-tac-toe with Grant in the waiting room.

The sisters of my Church have done a wonderful job taking care of my family as well.  They provided a place for G to play, taken me to treatment, and brought dinner in for our family.  I am amazed at the level of selfless service.  I was even super impressed by my brother-in-law D, who brought dinner to our family this week as well.  Coach enjoyed visiting with D and his Mom and being able to spend that time.  It's actually the second time that D has gone above and beyond for our family and I'm very grateful.

Monday brings another Brachy moment, with a rest until the last one on Friday.  I'm thankful that this will be all over for the most part by Thanksgiving.  I do love me some mashed potatoes!! Happy Hearts & Thankful Parts~ Kami

Tuesday, October 30, 2012

Lights & Tunnels

If I had the energy today, this is how I would be lookin'!! Yep...I'd be laughing all the way down the street.

Photo courtesy of Melissa Blasi

Today marks the last day that I have to be hooked to an IV pump for 5 hours and have massive amounts of liquids, toxins, and meds sent into my body.  I made it!!! One thing to check of my list of things to do over the next few weeks.  I have 2 more external radiation treatments and 3 brachys left.

Whoa nelly! Today I had a female doctor check out my parts and she explained to me something that I wasn't aware of.  The new external radiation treatments have been made to be easy on your external skin, but on the inside I have blistered, sunburned junk.  My hind-end, and my lady parts are sunburned from the radiation.  This essentially means that I pee fire, and poop glass.  Giddy-up!  Every time my chemo doctor checks me he asks this silly question, "Kami, do you have pain meds?" I answer..."Yep."  Then he asks me a sillier question, "Do you take them?" Kami's response, "  I hate how they make me feel."  He just blinks at me and we move on.  Guess who took their pain med tonight after pooping glass and blood for 30 minutes straight? Yep.  Rambo has left the building.  Bring on the healing!!

I have to tell you that I'm grateful for the family that I have.  My boys pray for me every night.  My husband wants only to see me smile and laugh.  Even my dog climbs under my bed and won't leave if I'm struggling.  My parents took two weeks out of their lives to come and help me, which was awesome! My mother-in-law is now here to help out.  My sisters and kiddos came and waged war on my house and backyard, my brothers call to check on me.  I am super blessed and uplifted.

I also have a confession to make:  I am not as tough as I thought I was.  I look at the people around me who sit in the chairs during chemo, who have stage 4 and beyond; some who will never hear the words, "Cancer-free, or remission" and who are delightful, uplifting and strong.  They are amazing.  Me? I complain, and cry, and have dark moments, and sit in my tub and watch netflix with tears in my eyes, cuddling my sons and thinking of all the things we should be doing.  I'm not tough.  I will be when this is all over.  Right now, I'm just moving from day to day.  I am strong, but I am in no way like the people I have met over the past few months.  I'm also not saying this for any crazy feedback.

I want you to know that I am human.  I have suffered, and hurt, and felt like death many, many times.  No, I didn't quit.....but to be honest, I have wanted to.  There are those out there still suffering and hurting, and now when I'm on the downhill slide, I'm hoping that we'll all reach out there and find another struggling soul to cheer on.  This battle is hard.  It sucks.  But mine was for a brief moment in time.  I'm confident I will hear those magical words in the next few months.  Meanwhile there are those out there that are waiting for white blood counts to increase, and mouth sores to ease so that they continue the fight.  Please help me.  Please find them.  Please do for them what you have done for me.  Cheer them, uplift them, fight for them when they can't fight for themselves.

That's where I am tonight.  Hug your loved ones for me!!!~Kami

Tuesday, October 23, 2012

Change in Plans

Due to my low tolerance for Cisplatin, my medicine oncologist made a change up last week.  He decided that because I nearly had a heart attack with the 100 mg dose of the chemo drug, that rather than do the high dose every 21 days.  We would change things up a bit and give me a 40 mg once a week.

Come again?

Initially when he said this I thought to myself, "Please just kill me now.  There's no way that I can do chemo every week.  I am a weak lady.  I admit I am not as strong as I thought I was.  I can't do it.  Please don't make me do it."

What I said was, "Why?"

Dr. S replied that because my body does tolerate the drug very well, hopefully the lower dose- to be monitored more closely, would keep things from getting as bad as they did.  Basically my white counts shot to the basement and my potassium was nowhere to be found.

So, last Tuesday I started the first of three lower doses.  I'm not going to lie.  It was terrible.  Reason being is that my stomach does not tolerate liquid toxin at all.  I'm pretty sure that no one's does.  Please keep in mind that I know I am blessed.  My worst side effects have been: nausea and epic diarrhea.  When I say EPIC.....there's no joke.  I'm very blessed in terms of side effects.  While my hair has continued to thin, and come out in bits here and there, I am not bald.  I don't have mouth sores.  I can eat, given the right meds, and I have so much support that I should never complain.

And I won't complain.  I'll just let you know that when I say my tub and my bed have been my friend...they really have.  I've also gotten to know the bathrooms in the Coolidge Walmart, and Sonic really well, and I'm not ashamed.

Today was my second round of weekly chemo.  That means I just have one more round to survive and attempt to not have my rectum blown out by brachy-therapy.  Also to date, I only have 6 more external radiation treatments to go.  While I won't be 100% for Halloween, I should be doing much better come Thanksgiving and for that I am eternally grateful.

Also on another happy side note: the tumor is shrinking ahead of schedule.

Truly, what is there to complain about? Absolutely nothing.  While it is not all sunshine and lollipops, it's definitely not gloom and doom.  Two weeks from now I am hoping to have all my treatments wrapped up and this part of fighting cancer just a memory with many bright spots.

But for now, I'm going to enjoy the fact that my parents are here.  My Dad is making the best dinners & breakfasts.  Seriously, they are THAT GOOD! My Mom and I laughed so hard today at chemo that the nurses had to come and ask what was so funny (we were playing this card game where I got to steal her twin boys...ha ha!) and Coach's team had a super sweet Homecoming victory.  My life is good, my kids are happy, and I will continue to take one day at a time.  Happy memories & future plans! ~Kami

Saturday, October 13, 2012

Sisters...Sister....Never Were There Such Devoted Sisters...

I am super lucky to have been born into a rather large family, by today's standards.  I have three brothers and two sisters, and when we're all together it's quite the time.

This week I was double lucky to have both of my sisters come to visit & help, along with two of my super cute nieces; whom I will nickname Lovely Locks and Pixie Face.  They really are that cute!

My sisters rolled into town on a Monday and immediately set to work cooking dinners, and cleaning.  It was good to have them come and see me, as I haven't been able to be in person with them since July.  I know that the whole cancer thing was taking it's toll on my family who live in Utah, and I felt like it was a good thing for them to see me, and be able to witness that I was in fact surviving this experience.

While they were here, my baby sister 'A' took me to Ulta for the first time following a treatment; I was in heaven.  She introduced me to glitter shadow and taught me how to apply it.  I'm not kidding, it really could be rocket science if you're not careful.  She and I brought Pixie Face with us, and can I tell you that that 3 year old knows her 'whipstick.'  She toted her Hello Kitty purse around Ulta looking for the ultimate bundle of lip gloss.  I had no idea that little girls were so particular and well versed in application.  Within minutes she had found this mini-monkey pack that had lipgloss, lip glitter, chapstick & nail polish in it.  I was muy impressed with her shopping skills.  Meanwhile, A and I had found the eye glitter and she was showing me how to apply when we looked over and Pixie Face had applied some lip stain that she had found further down the row.  I wish I would have taken a picture.....She. Looked. Awesome!

Meanwhile, back at the ranch, D my middle sister (who happens to be 17 months younger than me) was entertaining G and Lovely Locks by having a grappling session complete with attacking stuffed animals.  All the while she folded my laundry and did the dishes.  A, Pixie Face and I returned to a clean home, happy kids and a good day.

The kiddos swam, my sisters toted me back and forth to Casa Grande, we ate super good and healthy meals & really enjoyed hanging out.  I was really impressed with Lovely Locks and how well she blended right in with my rowdy boys, and added a bit of sweetness to their rambunctiousness.  She played, and ran, and rode scooters, worked on homework, played Skylanders and was a wonderful part of the crew!! She loves to help and create and make everyone around her feel happy.  She's quite the girl.  They miss her and Pixie Face every day.

The interaction between Pixie Face and G was priceless.  G is used to being the baby of the family and thinking he's the law.  Pixie Face had his number from the beginning and it turned out there was a new Sheriff in town.  It was hilarious to watch her saunter into a room, zero in on her target, and have G jumping within minutes.  He never even knew what hit him!! It was so funny.

Because it was a no chemo week, I was able to go to Casa Grande, get zapped and head home.  This made it easier with kiddos and planning.  Unfortunately, even without Chemo by the end of the week I was exhausted and not feeling super great.  Due to this and the fact that my emotions are a bit raw, I wasn't nice to my baby sister and said things I wish I could take back.  Details don't matter.  Feelings do.  I'm still sorry.

I am grateful for what my sisters did.  They took time out of their uber busy lives to come and spend it with me and my family.  They filled in where Coach was busy, and helped out more than they will ever know.  It was nice to have them here and I look forward to their return trip next Spring, when I'll feel like doing more than sitting in a car and laying on my bed.

I love you seesters!!  Thanks for loving me!!!

Sunday, October 7, 2012

Ta Da! Brachytherapy......

After my treatment last Wednesday, I received a phone call that Brachytherapy had been moved to the following day.  Yep, one day sooner than I originally planned on.  No big deal, right?

It really wasn't.

Coach was able to take me to the Clinic on Thursday and we enjoyed the trip into Phoenix together.  My kiddos have been staying at the in-laws all week, which was a huge relief for me and the kids I think.  They were able to get their crazy on with a little bit of help from the cousins (you know who you are; wild lazer tagging amazon!) and they thoroughly enjoyed themselves.

When we arrived at the clinic I was taken in to change into a delightful hospital gown, which again covered my rear.  Prior to going I was asked to take an anti-anxiety medication along with a potent pain killer, which I complied with because I'm learning that there really is a reason doctors prescribed so many darn pills.

I was then saddled up into the stirrups and Dr. L inserted a series of 4 to 5 different tubes into my uterus.  It was not pleasant.  In a place that I'm used to feeling tickling fingers from babies or the very least hiccups, the jabbing sensation was not so great.  But it wasn't unbearable either.  He was very efficient and had everything in place quickly.  Then the stirrups were released and I was able to lay with my legs flat, knees wide, as they wheeled me in for a CT scan to make sure the "paddle" was in correctly.  It was and so I was wheeled back into a soothing green room, equipped with a large flat screen that had a picture of the earth on it and some acoustic music playing in the background.  They dimmed the lights and went to find Coach.

He arrived with his laptop and while he worked, I feel asleep.  Within about 15 minutes of my power-nap, the lights were brought up slightly and a really nice physicist wheeled in.  He introduced himself as Dr. T, and then showed me these industrial brackets that were to fit into the paddle lines that would allow the radioactive grains of rice (a nickname because of the size of the radioactive elements used) to be inserted into each of the 5 sections, then removed.  One by one this machine would feed the radiation into the separate sections insuring that the right about of radiation would be received by my cervix and other necessary parts of the uterus and vaginal wall.  He then screwed the lines together, fed it back to the larger machine, and asked Coach to leave the room with him.

I laid there as the lights were dimmed again, the machine whirred, the cylinders fed the radiation to the appropriate parts, and after 6 minutes it was all over.  The attending nurse came in, and with the help of Dr. L removed the paddle and the other parts.

I'll be honest.  There was really nothing quippy to be said during this.  Oh wait! There was one part when Dr. L asked me how I felt and I said I knew was a Fondue tong holder felt like now.  Yep, that was the gist of  my humor that day.  I blame the meds. ;)

There was quite a bit of blood after the procedure, but I didn't feel any pain.  This last weekend as been relative pain free as well.  I did have to leave the Football game early this Friday as there was some rectal bleeding that alarmed me a bit.  Evidently that is a normal side effect of radiation in the pelvic/abdominal area.  When I called Dr. S, who was coming out a movie with his wife and still answered his cell phone, he told me to take a couple of medications and then call if the bleeding turned to hemorrhaging.  As it didn't, I didn't feel a need to call him back.

So, pads are my friends.  Food is finally starting to be something I like to eat again.  Water continues to make me gag, but I drink it 'cause I'd rather not get a porta-cath. continues on it's upward swing.  The boys and I were able to put up some Halloween decorations and I'm looking forward to the arrival of my sisters this week.

I am hanging on to every small bit of joy I can find, and believe it or not.......I'm becoming someone I actually like more these days!! Happy Fall & Carameled Apples! ~Kami

Thursday, October 4, 2012

I've been a Shadow

For the past week I haven't been myself.  My back was so tortured and my head so pained that I couldn't think beyond my own pain to realize what a wonderful world I live in.  I was really just a shadow, surviving, not living.

Yesterday Dr. B2 broke me down.  I couldn't smile anymore.  I couldn't come up with something quippy to get me out of the uncomfortable situation.  I just couldn't be happy about the fact I have cancer anymore.  How ridiculous does that sound?  Dr. B2 accused me of being in denial.  I accused him of being too stiff and difficult to talk to.  He was shocked.  I was shocked.  Then he smiled.  Not the creeper smile, a genuine smile.  What the heck just happened?

He explained that when he first met me I was so upbeat, over the moon, ready to get on with whatever was coming so that I could get back to my life.  I answered his questions with silly comebacks, and snarky invitations to BBQs.  I nailed him to the wall when he tried to insult my family, and I generally didn't care what he said, just so long as we could get the show on the road.  He accused me of being buried so deep in denial that I had no idea just how terrible this whole process would be and then he said the unthinkable, "Kami it's going to get worse and you need to understand that and hold on anyway."

Today he met he shadow and realized that something had shifted.  With my head in hands I started to cry.  I hate crying in front of people I don't know.  I hate being vulnerable and open to criticism that way.  But I was far too tired and sick to care anymore.

According to the nurse I had reached my nadir today.  The white and red cells had bottomed out and I was feeling terrible.  The chemo was doing it's job and my sanity wasn't holding on very well.  Also, my potassium levels were terrible, so what happens when you combine all of these lovely issues?  I cry.  I beg not to go to treatment.  I tremble when I speak.  I shuffle when I walk.  And I don't answer the question, "How are you doing?" very well.  I just become a shadow and attempt to slip away.

Dr. B2 wouldn't let me slip away.  He did a full make-up on me.  My temperature was elevated, I was sweating, my back felt like the asphalt roller had just parked there, and I had lost 10 pounds in the span of a week.  So Dr. B2 did the only thing he could do to get to me; he showed me a set of pictures of his twins.  And yes, my eyes lit up, and yes the shadow faded for a bit.  Suddenly this man whose culture I had no background in was human to me.  We had children in common.  He understood why I was trying so hard to hold on.  It was actually a good thing.

After I was radiated I was sent over to the chemo side of the clinic where I was hooked up to 4 bags of medication via IV, and then given two more bags for the grand total of 5 hours spent in the clinic that day.  My chaperone Miss R was very patient and kind about the extension of her day out with me.  I am blessed with a bountiful of wonderful friends.

When I was finally sprung from the clinic (after also paying the remaining $8,000.00 deductible via credit card)- I was hungry.  For the first time in one week I was hungry.  Coach took me to an italian restaurant where before I could even look at my food I had a lovely case of diarrhea set in which had me trapped in the bathroom for the 20 minutes of our date.  Sorry honey.  So we got my food to go, stopped at the pharmacy for the new updated meds to the tune of $120.00, and came home to enjoy the evening; feeling like myself fully and completely.  Tonight I was not opaque.  I was as tangible and real as I've been in a long time. I am blessed. Happy, hopefully cooler days ahead, and fully lived lives!~Kami

Tuesday, October 2, 2012

Kami Reinvented

I finally figured out what was causing the ringing in my noggin': Zofran.  I probably just spelled that wrong.  But to all the wonderful women whose sadistic doctors prescribed them this to keep them from throwing up during pregnancy....I am so sorry.  The effect it had on me was much like a bunch of electrical screwdrivers twisting into my brain; even the heavy-duty pain meds couldn't touch it.  So like any pioneer stock woman I did what had to be done: I quit taking it.

Now I'm cognizant again. Look out world!

On Sunday I had the privilege of attending Church.  I love the Primary program.  I love it with all my heart.  This year was the first time in a while that I was able to sit and just soak the whole moment in.  G had to be bribed with the enticing of a very large chocolate chip cookie to say his part, "I'm trying to be like Jesus by helping my Mom."  K & P were quite the scholarly gentleman as they delivered their scriptures and prose.  Then they melted my heart by singing the second verse to 'I'm Trying to Be Like Jesus.'  It was more than this slightly bedraggled mother's heart could take.  Left me sobbing and a bit shaky for the final song.  In short....I was uplifted & edified by the spirits of these kiddos.

Being uplifted is deadly for cancer.  It recharges me and makes me ready to carve out some serious tumors.  It's a good thing the mass is in such an awkward place, right?

Monday brought a lovely chauffeur with dazzling blue eyes and decked out in her Kami's a Knock Out finery.  I'm not kidding.  She was accessorized and looking to kill, my friends.  The ride to and fro was delightful and I'm learning more and more about these valiant women who are serving my family in so many ways.  Monday also brought a large down payment on my deductible of $3,000.00.  Woohoo!

Today's darling driver was equally as snappy in her shirt & matching sandals.  We shared serious insight and a trip to the local zap center where I was informed that the Cancer Treatment Center was requiring that I pay the full out of pocket deductible this week.  In my former life, this would frustrate me.  However, in my refiner's fire I'm learning a valuable lesson: money is only that.  So I said I would pay more on my return trip, which I can and will.  I'm hoping that this serves as a lesson to everyone out there that high deductible insurance is long as you don't have a large cervical mass lurking nearby.

This week is shaping up to be MUCH MUCH better than last week.  I've received so many wonderful packages and cards in the mail with loads of cheer & love.  My kiddos remind me every day that I matter, and I'm surrounded by a wonderful Prince Charming (yes I've been watching Once Upon a Time on Netflix), and family & friends that keep me moving in the right direction.

Friday looms like a bit of  dark cloud with the unknown Brachytherapy monster lurking, but I will attempt to take it in stride and let you know how that all pans out.  I underestimated the effects of Chemo & Radiation on my body, but am grateful for the human desire to find HOPE in all things.  You give me HOPE & I am better for the refining. ~Kami

Saturday, September 29, 2012

Chemo & Rad Week #1

There's a distinct ringing in my ears as I sit down to type this out.  If none of this makes sense, that would be why.  No matter what medication I take, I can't make the ringing stop.  I'm not least...not yet.

Monday was a day that I got to go shopping and not worry for one more day that I had cancer.  I should have lived it up a little more.

Tuesday was a day that will live in infamy for me.  I rolled into Casa Grande with my peep 'T' right on time.  Within a matter of minutes I was hooked to an IV and fluids were flowing.  I got a bag of the glucose, followed by a bag of anti-nausea.  Then I was interrupted for the radiation moment.  Being placed on the radiation table and having the pics taken followed by the treatment took maybe 20 minutes.

After radiation I was back on the chemo side and the chemo meds were introduced into my system.  Let me just say that watching toxins drip into your body is not a fun thing.  Obviously.  I didn't feel any different, but I did feel tired.  I cannot imagine the strength and fortitude it takes to watch this happen to your child, or loved one and know that you can't stop it, because the alternative is most certainly death.

When the chemo was done, I got two more bags of fluids and 5 hours later T and I got to walk out of the clinic.  I felt super tired, and bit ground down but was able to attend a church board meeting that night.  The rest of the night passed in a sleepy stupor, and I didn't take any meds......which turned out to be a BIG mistake.

Wednesday morning dawned early with a splitting headache and a super unhappy stomach.  My back ached, my soul hurt, my spirits were not up to par.  I wanted to climb into bed and stay there.  I was not very fun.  I did not want to go back to Casa Grande for more radiation.  But I did.

I received a shot at the clinic which helped to downgrade some of the unhappy stomach issues I was having, but my veins were not looking so hot.  I did my treatment and then came home and crashed.

Thursday blended into Wednesday, although I was able to eat a little bit that day.

Friday all of my veins were in terrible shape.  I had one plump one left, which P was able to hook the IV back into to try and hydrate my sad sorry state.  It worked great until she had the machine pumping full blast and my stomach was not a happy camper.  Radiation took place as normal, and I was free to go.

Friday night I attempted a comeback.  I've been religious about my meds the rest of this week.  That's advice I would give.....keep track of what you're taking and when.  I accidentally double dosed on an anti-nausea med which left my head feeling like a truck hit it.

I'm grateful to all the wonderful women to have played with my children, let me ride in their cars, and allowed me to be less than I am right now.  Death seems like a better option than what the good doctors want me to go through, but because I have 4 very wonderful reasons to fight.....I'll continue to do so.

I get today and Sunday off and am hoping to resume my fighter stance soon. Happy days, and warm hearts ahead. ~Kami

Wednesday, September 26, 2012

How Monday Threw Down

To catch up from the last few days let's just say that Monday was a wash.  My sis-in-law and I were able to go to Casa Grande, with help of my mother-in-law and brother-in-law.  The kiddos were well taken care of, and it was off to the races, or so we thought.

Upon our arrival at the clinic, we were checked in and then proceeded to wait.  I had a feeling when I was talking to the front secretaries that something wasn't right.  A and I visited for a bit.  At this time a volunteer from the American Cancer Society came over and asked which one of us was sick, because neither of us looked like it.  I raised my hand, even though I didn't want to.

I walked over to where she was and sat down.  She handed me a clip board with an informational sheet to fill out, which I did.  We then started talking about the type of cancer I have, and how much you appreciate your children that much more when the option of having more isn't there.  It was a good conversation.

At this point the Operations Manager came out and sat next to me.  She informed me that the insurance hadn't approved the chemo treatment and rather than start anything this day, she would rather we came back.  She would call me when the insurance finally got everything done.  Okee-dokee.

On our way out to the car 'A' suggested we go shopping, and that is exactly what we did!! We were both able to find a little somethin' somethin' at Ross' and then headed over to Dairy Queen for a treat before heading home.

The rest of the day was spent with swimming, lunch, and playing cousins.  Not really a bad way to spend the day.  Later in the afternoon/early evening the clinic called to inform me that I was set for treatment on Tuesday and to be at the clinic by 9:30.  My stomach flip-flopped and I didn't sleep until 1:00 a.m.  Not a smart choice.  I recommend attempting to at least sleep before you have to go through the treatment involving pumping toxic chemicals into your body.

More to come later.  Today I'm feeling super poop-tacular and don't really feel like reliving the day just yet.  I take that back, the day was great, the night and day that followed......yuck.

Will get back to you once the nausea releases it's grip.  Nothin' but love! ~Kami

Saturday, September 22, 2012

Breast Feeding & Stunt Doubles

I spend a lot of time in the tub these days.  It's usually at the end of the day when all the kiddos are in bed and Coach has crashed in G's bed because these days he refuses to go to sleep by himself.  *Please note that he shares a bedroom.  Kids are funny.

While in the tub this evening I was reminded of the day directly following the birth of P.  The night had been rough.  P chose to grace us with his presence after 15 hours of labor and arrived at 11:40 that evening.  I was a hot mess because I had no idea what to expect, even though I thought I had read everything.  My parts hurt, my brain hurt,  my life hurt at that point.  P was fighting me with the breast feeding and I was rapidly reaching melt down stage.

My parents had come to visit that morning and were followed into the room by more family.  On any normal day I would have been fine with it all.  Sleep deprived and body hurting I was not in a good place.  My Dad stood there for a moment, looked into my eyes, shifted his gaze to P and then quietly asked my Mom if she could help me.  He then helped convince everyone else to find something better to do for the time being.  Soon it was just my Mother, P and me.  She quickly assessed the nursing issues and gave me wisdom that soothed my soul.

It's nice to be known like that.  Up until that point I knew that my Dad loved me, but it was in that moment that I really felt it.  I knew I was his daughter, and without words he felt what I needed in order to be brought back to whole and then made it happen.  Parents are remarkable that way.

Parents know their kiddos inside and out and would do anything for them. If your life handed you a load of crap and expected you to call them family, I'm truly sorry.  Trust me when I say that 99.9% of parents would throw themselves into oncoming traffic if they thought it would keep their child from harm.  My parents are like that.  I hope that yours are too.  I'm lucky in another regard, because I think my in-laws would also do that for me.

This is where it gets tricky.  In the past few months, I have gained a deeper respect for the parents of cancer patients.  There has to be a place in their heart where they hurt so deeply from, because for all that they are, and all that they desire to do- they cannot take this from their children; no matter how old their children are.  There is no demon to wrestle, no physicality to this brutal disease that appears in every form.  There is only the epic fight that their loved one must face; with hands held, tears cried, and prayers whispered in the dark of night.  Sometimes being a cancer patient is a lonely place, because the struggle can feel so solitary if you allow yourself to get trapped in that mindset.  Thank goodness for families that love us- crazy trials and all.

This is where a stunt double would be awesome!  No, I'm not digressing.  When a fight scene is staged, no one expects the lead actor to take the hit.  Very rarely do you ever find the leading lady actually having to grapple the hideous monster, or careen down the street at breakneck speeds toward the enemy.  The director screams "CUT!" the stunt double gets into the place, and WHAMO, the fight continues with no blows taken by the leading man/lady.  Can you imagine the mental fortitude?  I know they're not really taking hits, but sometimes things go a bit whack-a-doo and they end up with a great story (best case scenario). Wouldn't it be grand if life worked that way?

(Ha ha ha.  This is for you Twilighters)

In my head if I catch myself thinking too much about what lies in store, I imagine taking a breather for a bit.  I yell "CUT!" and a Kami Doppleganger gets into place.  I let the stunt double stand in until I feel up to it and then "CUT!" is yelled again and I jump back into scene when it calls for cupcake eating and laughter.

I think there's a HUGE reason why this type of life event doesn't work that way; because we have families.  I'm pretty sure I know the individuals that would volunteer to be my stunt doubles in life. They would gladly take the hit for me, and not think twice.  I'd like to think I would do the same for them. The thought of that leaves me breathless and grateful for a body and a mind that can fight this without the stunt double because I love those that would do that for me way too much.

Before this gets waaaaaaay over the top philosophical, I wanted to send a "YOU CAN DO IT!" to Tristan, Ashley & Jeff.  While the stunt double button is not an option, please know that I'm in the background yelling "CUT!" on your worst days and wishing that I could be your stunt double- as I know all your families are doing as well.  I hear about each of you, and I am given strength to continue on towards treatment and ultimately a better day.  Keep your chins up, your faith strong, and lets punch some cancer in the throat, so that our movie can continue towards the "Happily Ever After...." that we're all hoping for.

(Scene ends with a huge pyrotechnic explosion through which each survivor comes walking out decked in the toughest looking, black leather, beat up outfit you can imagine.  Arms are ripped up, knuckles are hammered, a black eye is suggested on the right one, left cheek bone is scratched, but each hero is wearing a BOOYAH grin, as the screen transitions to white with some serious rock music playing.)

Something to Believe In

I was able to attend a Chemo Q & A yesterday with the fabulous Ms. T, and had most of my questions answered, which was really reassuring and nice.  I'll write more about that in another post.

Today I wanted to talk a little bit about something so important as you're heading down the road that I'm going down.  It's amazing to me the number of people that are surprised by the smile on my face.  When I walked into the clinic yesterday and up to the check-in desk the ladies that man it asked me how I was doing.  I replied, "Awesome! How are you?"  No, I'm not a super-annoying chipper type.  I was just feeling really good in that moment and thought I'd pass it along.

"I love your attitude! I wish that more people were so happy, like you are."

That statement was really nice.  It also got me thinking.  I am sure that this whole process, once I get into it is really going to stink.  Going to stink so bad that even the garbage dump won't touch it.   Stinky cheese-bad.  What's the point in being a negative Nelly, before I've even started?  I have so many things to be happy about, let me name a few:

1. I don't have to get a Portal catheter put into my collar-bone area.  That is huge!  It's a purple heart shaped medical device that makes it possible to stick me with a needle in excess of 50 times.  Most people who get ports would have to go in every 4 months to have it flushed.  They could keep it in for up to 2 years.  It has a direct line that delivers meds into my blood stream without having to constantly stick my veins.  It would make it really hard to live the life I have and Dr. S felt it was unnecessary.  Super score for Kami!

2. I have the best husband in the world.  Since this whole situation has started, Coach has been very supportive.  He holds me when I need to fall apart and helps to put me back together again.  He is actually THANKFUL FOR ME! How crazy is that?! I'm a hot mess and he loves it! That, my friends, is priceless.

3. My kids think I'm pretty great.  I'm not sure why half the time.  I've been a tired, dragging, grumpy troll and still my kiddos run up to me and give me kisses and hugs at random times.  They are good about telling me to take naps.  P has told me multiple times to, "Sleep for a half hour Mom, I've got this."  He means taking care of his brothers.  I really have super awesome kids.  They even took the first day of their Fall break to help me clean the house, and didn't complain once.  Whoa nelly!

4. I couldn't ask for a better support system.  My friends span, at the very least, three states.  At the very most, the whole country.  I've had emails from people as far away as Europe, encouraging me and asking questions.  It's wonderful to think of all these people tied together in support of one person, who is in constant awe of their desire to do so.  What do I have to complain about?

5. This journey has not been short on laughs.  If you look for the opportunities, you will find them in all cases.  Yes, the fact this is happening is a bit tragic.  However, I'm not dying.  When faced with the choice to laugh or to cry, I'm trying to find reasons to laugh.  Random doctor's facial expressions, nurses comments, awkward positions, hilarious tools, pizza dough bellies....what's not to laugh about? In fact, every time I type the word 'vagina' I giggle.  A tad immature, but if you say it out loud enough it really is the funniest word I've heard!

It all boils down to one thing: the belief that this too shall pass.  It's just a blip on my life's radar and soon will be just a great memory of how people that I have known in my life, pulled together in support to one random girl when she really needed it.  I believe in something greater than myself.  I believe that I will beat this.  I believe that I've been strengthened and uplifted throughout the whole journey.  I believe that I am more than just a cancer patient, and I believe that it's thanks to people like YOU that I can keep my head up and throw out a random quirky comment.

You've got to believe in something.  That's what I do; with all my heart.  When you make the choice to believe in nothing, you'll get exactly what you believe in. Much love, and Happy Saturdays~ Kami

Wednesday, September 19, 2012

Brachytherapy & Other Good News

Once again I found myself in Phoenix.  Today I was accompanied by Coach.  Yeah, I think he has a crush on me or something.  We went to the Arizona Oncology radiation department and got to meet with Dr. L....finally.

His support staff is pretty stellar.  We were first introduced to their billing department.  Miss J was fantastic! She let me know that I had a $11,000 deductible and then waited for my shock to appear.  It didn't.  By now this is just old news.  Then she moved on to point number 2- the insurance company is currently investigating the statement I made to Dr. G about having symptoms in February.  Turns out, insurance companies can boot you off their policies if they feel that you have symptoms that should have been checked out prior to coming on board with their company.  Well golly gee, if I knew that irregular vaginal bleeding (I thought it was a period that had popped up from stress) and some abdominal cramping (again normal for me because I carry my anxiety in my stomach) was going to be symptomatic of cervical cancer, I probably would have done something about it when I had ROCKSTAR INSURANCE.  Grrr.  <deep breath>

Anywho, none of this was really news to me.  I have now been educated about total disclosures with doctors though.  If you're not really sure of the date, it's best to say the symptoms started that very day. (Yes, I'm being sarcastic).  That way there's never a question, right?

Moving on, Dr. L's MA (medical assistant) was quite a delight as well.  She totally ripped me a new one for not bringing along my 'Bag-it'.  The Bag-it is a three-ring binder that is put together by a foundation who's head is a cancer survivor.  In the binder you have places to put business cards, calendars to track appointments, places for notes & extra pockets to put additional information you get.  I didn't bring it because I'm still 5% in denial and keep pushing all the info into a corner in my house.  Yes, I know this isn't effective, but we all cope differently.  I let her slap my wrist and then we laughed about my hot mess of a doctor rotation.

Dr. L came in then and talked to be about the process of brachytherapy.  A rod will be inserted into the vagina and then up into the uterus.  It then has two drum like parts that will sit snug against the cervix.  These parts are all connected by a narrow straw-like tube that will aid in the delivery of the radiation.  This is a localized treatment to get at the cancer, without blowing out my bladder and rectal area.  Sounds like a spa-day right?   After the discussion of what the side effects may be he handed me a hospital gown and said he'd be back in a minute.

Coach's eyebrows raised when I was on the table, complete with gown on my lap, within a matter of seconds.  Yeah, it's like a day job for me now.  The tips are crappy, but the company is always interesting.  Dr. L returned with V (the MA) and he pulled yet another duck from the drawer,  but his office is fancy and has individually wrapped ducks.  Oo la la!  He slathered it in lubricant and then I said, "Shall I assume the position?"  V swallowed her gum, and Coach smirked.  Dr. response.

Well, what can you do?  Clearly Radiology Oncologists have had their sense of humor radioactively removed.  Either that or they've damaged the humorous part of their brains by placing their noggins too close to the radioactive body parts of their patients.

I asked him nicely not to rotate the speculum, to which he acquiesced.  The exam was complete and then he informed me that our first appointment would be October 5th.  I got dressed, he handed me two scripts for pain killers (which I probably won't fill until absolutely necessary) and we were finished.

Coach and I stopped for lunch and ran into a football buddy of his that he hasn't seen in 12 years.  Super crazy, but really great!  He and his wife were one of my favorite parts of Coach's college career, so it was really good to see him.

Incidentally, the U of U plays ASU this weekend.  I'm hoping the U kicks their butt.  Not because I don't enjoy living in AZ, but mostly because well......GO UTES!

Tuesday, September 18, 2012

Rollercoasters & Chemo

It's been a rough and tough week.  It's crazy in the terms that I haven't even started treatment yet and already I'm feeling....overwhelmed?  I can't really put a voice to the cacophony of emotions that are rolling around in my head right now.  So instead, I'll give you the narrative of the past couple of days.

Yesterday I met with Dr. B2 for the first time and I'm struggling with the cultural differences between he and I.  The desire to treat and help is universal, but being able to communicate through facial expressions and social cues is really throwing me off with this guy.  I was informed today that as a woman who likes to speak her mind, and put others at ease by throwing out jokes here and there- I intimidate him.  Say what?  I wasn't trying to intimidate him at all.

The whole event began with an hour wait in the receiving area, followed by an additional wait in the treatment room.  That in and of itself makes me want to scream.  My time is just as important as everyone else's.  While I don't have a large mechanical business machine grinding around me, I have three little boys that I want to be home with; and having to wait for an 'appointment' always makes me grind my teeth.  Perhaps I will start billing for my time as well, eh?

When I finally did get to meet with Dr. B2, it was the usual run down.  Let's talk for a minute and then, let me see your nether-regions.  Such is my life these days.  This day, I was met with the good fortune of being able to wear....wait for it.....CLOTH TREATMENT GOWNS & LAP WRAPS.  Woot woot!  Just that alone brought a smile to my face.  Yes folks, we're fancy down in Casa Grande.

My initial joy of the cloth garments was short lived, however.  Dr. B2 quickly brought forth the duck, and inserted into said orifice, then did the unthinkable: he turned it left and right.  If you're now crossing your legs and flinching, then you know exactly what I'm talking about.  If you're at a loss for how that moment feels,'re lucky.

Quack, Quack, Quack...OUCH!

While he was probing he was asking me a multitude of questions.  It's always awkward to be questioned while in the position that I was in.  What can you do?  When the questions finally died down we got down to the meat and potatoes, while fully clothed I might add.

My staging, was either mis-delivered, or my husband as well as myself heard incorrectly.  I am Stage IIB.  This means that I am not a candidate for hysterectomy due to the size of the mass.  Any margin (the space around the affected area, including all of the ovaries, uterus & cervix) that they would attempt to create, of clean tissue, would cut further into my organs in still be hitting tumor.  Essentially, they would be slicing through tumor, while attempting to get around it.  No surgery.  This is now from 2 oncologists.

The treatment will be as follows: 25-5 minute doses of external radiation delivered via a CT-like machine.  I got tattooed today in three microscopic regions in order to keep the direction of the radiation camera right on target (possible side effects: fatigue, burning in region, frequent urination). 3-Chemotherapy regiments utilizing the drugs of Cisplatin & Gemcitabine (possible side effects: change of infection [stay away from people with infections], fatigue, upset stomach, diarrhea, anemia, skin irritation, hair loss, fever, mouth irritation, increase chances of blood loss, harm to kidneys).  The final step is 5-brachytherapy sessions which will take place during the final weeks of radiation, once the mass has been shrunk.  Brachytherapy (internal radiation) will have to take place at the Arizona Oncology center because this clinic is not equipped to deliver the brachytherapy; which means I get to finally meet with Dr. L, and yes I called today to make the appointment myself.

Brachytherapy delivers radiation from a device that is inserted inside the vagina.  It delivers a high does of radiation to the area where cancer cells are most likely to be found, with the hope of minimizing the effects of radiation on health tissues.

 No muy bueno.

On the upside, I really enjoy the oncologist in charge of my chemotherapy care.  I met him today at our planning session and instantly feel relieved that he is on my side.  Dr. S is a champ! He is a tough, straight forward kind of guy that will say it like it is.  He doesn't mess around and actually asked me how I was handling all of this.  When we met he let me know that there is a chance I will lose my hair.  I can even handle that right now.  He let me know that the world will not end, and that I needed to be more educated than I am. Dr. S printed off a packet of information for me to go over and much of what I've shared earlier comes from the information he gave me.  He introduced me to his staff, and handed me a card with his cell number on it.  What a relief to feel like someone cares.

Today M went with me to my appointment that started at 8:00 a.m. and ended around 1 p.m.  I was poked three times with needles, had to drink barium (berry flavored), then was asked to drop my pants and lay on a rough bench to be sent through another CT machine for additional scans.  I yelled at Dr. B2 that he could wait while I used the restroom and not to reschedule my scan for 1:00, just because I needed 2 seconds to pee.  I made new friends named Ashley, Rafael, Joni, Diana, Alexis, Pelar, Rebecka & Dawn.  I visited in broken Spanish with a lovely lady in the waiting room, ran into the game announcer from Coach's school- which is a Cancer survivor himself, and lost my mind at least twice.

On the wall on the radiation side of the clinic is this awful poster of what skin melanoma looks like, and how moles can mutate.  I asked Ashley the tech who put that nasty thing on the wall.  She then said that Diana liked to kiss it on the mole every morning for luck.  Diana said, that's because when I kiss the cancer, it gets better.  I told Diana she wasn't allowed to kiss my cancer because that is just awkward.

Treatment starts on Monday.  Chemo & radiation.  I have an appointment tomorrow in Phoenix with Dr. L, finally.  I have one more appointment on Friday with the nurses in the chemo clinic to go over any questions I might have.  Giddyup kids!

With all that being said: I am fine.  I will beat this.  I will be probed, poked, burned, made sick, made healthy, and made sick again before this is all over, but what I've come away with is a new appreciation for kind words and a smile.  If there is one thing in the health profession that I'm learning is that a genuine smile and love for humanity cannot be faked.  It is necessary for recovery and completely required for those of us in the trenches not to lose faith in humanity.  

One last thought, which is really a question: What is worth fighting for? Why do you do what you do everyday? While you're doing that, what are you fighting for? We're all fighting for something.  What is your crusade? ~ Kami