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 one....my 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 unpleasant....it is over.

Dr. L decided to let a med student (without my permission) attempt to remove the brachy paddle....no 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