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, "Uh...no.  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.  And.....life 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 great.....as 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