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

Monday, September 17, 2012

Just a 'titch' frustrated.

Went on a journey to Casa Grande today and met with the oncologist that will oversee the radiation treatment.  Dr. B2 upstaged my cancer to Stage IIB.  Fart.  He then went into detail about the treatment regime: 25 days of 5 minute external radiation treatments.  During which there will be 5 treatments of the internal radiation (which does not sound pleasant at all- details to follow later).

Tomorrow I get to go back to Casa Grande to meet with the chemotherapy doctor and then participate in a simulation which includes a CT scan in the position that they will treat my cancer.  It's all in preparation for.... wait for it..........

A return trip to Phoenix to see the doctor who I should have seen last Thursday, but Dr. B1's office staff cancelled the appointment.  Turns out he is the only doctor in the area qualified to perform the internal radiation treatment.  This means........treatment can't start until he sizes up the quality of my mass.  Another week, another frustration.  Grrr...

Later I'll post in detail about this visit, because right now I can't be trusted to not cover this post in sarcasm and disgust.  Not toward anyone in particular, really.

It just wasn't the best day I've ever had.

On the upside it's my friend's Birthday and That. Is. Reason. To. Celebrate! Woot!! Woot!!~ Kami

Thursday, September 13, 2012

Today, I'm just MAD.

Yesterday I received a phone call from a woman I shall call "Carmen," mostly because that is her name and also because she irritated me so much that she does not deserve an alter-ego.  In said conversation she informed me that I was scheduled to meet with the radiologist at Arizona Oncology today at 10:00 a.m.  I would meet in the Phoenix building and then gave me his suite number.

When she said Phoenix, I stopped her right there and said, "Are you sure it isn't Casa Grande? When I talked with Dr. B, he said you guys were working on finding me a doctor a bit closer to home."

Her reply was, "Nope.  I have orders to get you in here with Dr. L tomorrow at 10."

"Okay then."  I took down all the information, then called my Mother-in-law to see if she could watch G.  She said that she would.  I then called Coach to see if he would be available.  He replied that he would be ready and willing to come with me.  Perfecto!

Today dawned lovely.  We got the boys off to school and plopped G in the booster between us, and we were off to the races.  We got into Mesa in record time.  Coach and I were able to go in and chat with the in-laws for a bit before squeezing Master G goodbye.  He was mad.  He didn't want me to go.  He wanted to go with me.  It ripped my heart out and this is the reason why:

Over the next few months, I don't know how great I'll be doing.  I don't know if I'll be able to do all the things that we like to do together.  I don't want to change what we do.  I love the life that we have.  I hate leaving him with different people all the time.  Can you imagine what this is doing to him?  He's only 4. So, already the tension was rising in me as we backed out of the car port and he was standing with his back against the brick wall, one fire-engine boot-clad foot kicked up against the wall, not looking at me; face down and unhappy.  Heart ripped out.....check.

We arrived at Arizona Oncology at 9:30 and headed to Dr. L's suite.  When I went to check in the secretary gave me a happy face, then as she looked at the computer screen, her lovely eyebrows pulled together and I had a sense of dread.

"Can't find me?" I spelled my last name for her again.  She finally found the appointment and then let me know that it had been cancelled last night per patient request.  Come again?  As said patient, I reassured her that I hadn't cancelled it.  

"You'll have to talk to Carmen in Dr. B's office. I'm really sorry.  Your appointment slot has been given to someone else and there's nothing available until next week."  Tension rising.  Eyebrows pulling closer to my cheeks.  I could feel my cheeks turning red.  Tea-kettle boiling........Check.

I spun on my heel, grabbed my bag, swung that over my shoulder and proceeded out the front door.  I think Coach was behind me, but I didn't check.  I didn't realize that he was at least 10 steps behind me, until I was waiting for the elevator.

When we arrived at Dr. B's bank of suites I got to speak with Sister Happy Pants from the first meeting.  I asked if I could speak with Carmen, she wanted to know if I meant Carla.  Nope, I meant Carmen.  She called Carla.  Carla said to call Carmen.  She looked at me.  I looked back at her.  She called Carmen.  Sometimes I wish it was socially okay to shoot people with rubber bands.

Carmen took 20 minutes to come out from hiding.  When she did she was armed with an email that had been sent to her from Dr. B's P.A., which stated that the appointment that was set up needed to be cancelled per the request of the patient to find a closer doctor.  Hijole.  I informed Carmen that I had asked her about that yesterday what this appointment was made.  She remembered.  I asked her if she had tried to call me to tell me this appointment had been cancelled.  She said she had not.  I asked her if the P.A. had tried.  She said, "I guess not."

This is when I freaked out.  In my mind images of G, in-laws, Coach's work schedule, children at school, red, and rampage were floating around.  So what did I do? I choked up. I do that when I'm angry.  I usually put on my game face, and burst into tears.  It's not really fun when you're trying to wear your big girl panties. 

I explained to her what had happened to make this appointment feasible.  She listened calmly in her pink, halter top that had sequins and said, 'LOVE' all over it.  I think she blinked twice and then she apologized and said that she would get on the mistake 'STAT' to get it fixed.  In the meantime, there was nothing I could do, but go back to G, and start this all over again another day.

Coach walked me out to the elevators and then to the car.  He held my hand, he patted my back, and when the car door closed, I just fell apart.  A number of things fell out of my mouth, some of them not kind, most of them to the effect of,  "I just want this to be over."  It is the truth.

There are days that I wake up and feel so good that I forget that this is my reality.  Then 2:00 p.m. hits, my back is screaming at me, and I can barely keep my eyes open.  This is when I realize that, yep, I'm still not well.  It is in those moments that I hate all of this.  Soon one of my kids gives me a huge hug, or tells me I'm awesome, or tells me how awesome they are and the world is right again.

Today, I wanted to quit.  Today, before the bills start to really pile up, before we're in over our heads, before I no longer feel quite like myself, I wanted to quit.  I really did.  I put my head in my hands and for a moment envisioned life in that moment, I found true pain.  If I quit, then what happens to the people that I love?  That hurt worse than my most terrible day to date.

So, I kicked myself in the pants.  Cried a little more, because I was so ready to be armed with a schedule and information, but now know that this will have to wait until Monday, and then I did what Coach calls, "Getting my mind right."  I took a good hard look around, listed off 20 of my blessings, and stopped feeling sorry for myself over the fact that two idiots in the doctor's office don't know how to use a phone.  Poor things.

Guess what was waiting for me at my in-laws' house? Yep! G.  He was waiting, with a snuggle, and a arm squeeze and quiet, "I missed you lots."

So, my friends, onward and upward.  Come Monday there will be a battle-plan and soon this will be over.  Hang in there with me, will you? Happy faces, and brighter days ahead!! ~Kami

Tuesday, September 11, 2012

PET Scan Results and Where we Go From Here.

I thought, perhaps, with all the pictures that I've been using that I should post one of myself.  This is the most recent picture I have, which was taken in July while I was still in Utah: pre-diagnosis, pre-enlightenment, pre-worries.  I'm happy in it and not feeling run down.  My Mom will probably kill me, but I think she looks wonderful.  We had a great day that day, taking all the littles to see Ice Age: Continental Drift.  They all did a great job and it was loads of fun.  I haven't had any pictures taken of myself since here you go.

I decided to be pro-active today, since I have lots of people holding their breath on how they can best help me.  I feel like my world has inhaled and we're all waiting for the results and treatment plans before we can exhale again.  I called Dr. B's office and had the opportunity to talk to a chipper, young lass who called over to the Casa Grande clinic (the stinkers) to get the films and test results.  They were supposed to have been sent last Thursday.  I'm rapidly becoming a believer in the squeaky wheel mentality.

Imagine my surprise when tonight at 5:45 pm. Dr. B called from his home phone to talk to me about the test results and what he was thinking, plan wise.  Turns out the dirty mass is 5 cm in diameter.  Cripes.  Also turns out that it does involve a small part of my vaginal area (I hate typing that word), and this changes my staging to Stage II.  I figured that was coming, and so there was no impact, emotionally, on my part.  Dr. B sat there for a minute and so I said, "Roger that.  What else do you have?"  He actually laughed a bit.  Then he said that the treatment plan wouldn't change.  We are a go for 6 weeks of radiation and a weekly dose of low-chemo. "Okey-dokey."  A chuckle.  Then he said what I think- he felt, was going to be the hammer drop, "Kami, you are going to go through menopause.  There's no way around it."

Because he was very up front in the beginning, I feel like I've already come to grips with this fact.  No more babies, no more tampons, no more PMSing (in the words of Coach).  However, bring on the night sweats, hot flashes, and uneven hormonal rampages (at least that's what I'm going to blame my instability on) for the next few months.  Either way, it's unavoidable.  I've prayed about it, and feel like this is the right path for me.

"And?" was my response.

"I wish all my patients were as level-headed as you have been."  He told me.  That made me smile, because I'm quite the redneck rampage machine when I don't fully understand what's going on. In this case, I already knew the outcome.  Except for the size of the darn thing, it's all old news.

He is referring to me to a doctor who will set up the radiation out here, closer to home.  I think Casa Grande will be decent, mostly because I won't be fighting traffic, ever.  I should hear from the new doctor in the next few days and then we're off.

Thanks for caring, for supporting me, and for giving me a kick in the pants when needed.  With friends like ya'll, who needs anything more? ~Kami

PS-Now, thanks to my Aunt K, and Friend M, I will have plenty of awesome shirts to be wearing to these appointments.  I have one that says, "Fight Like a Girl" and another that says, "Kami is a KNOCK OUT, Cervical Cancer." I'll be the best dressed cervical mass carrier/fighter in the State.  Thanks loads & bunches!!!

Sunday, September 9, 2012


I am tired.  Not even just a little bit.  I am mentally, physically, emotionally, and spiritually....tired.

While I am all of these things, my mind will not shut off and so it is that I am sitting at my computer typing away at 2:15 in the morning.  Utter ridiculousness.  Thank heavens for spell check at this time of time night.

As the process for treatment creeps ever closer I find myself running my poor body into the ground to try and keep up with all that my "normal" days entail.  I enjoy taking Grant to play at friend's houses, while I laugh with his friend's mothers.  I enjoy swimming, shopping, cleaning (?), and keeping my world running.  I find it exciting to cheer Coach and his crazy band of football players on every Friday night.  I just wish I could come to terms with the fact that while I'm doing all of these things, there is an entity attacking my body and literally sucking the life out of it.  Lame.

Please read me right when I say, that I am in no way helpless or defeated.

I'm just pooped and don't know when to quit and take a nap.  I think this is a symptom of womanhood/motherhood/estrogen.  We all think we can just go and go and go and finally when we can't go anymore physically, our brains take over and rest.  Perhaps it's just having one element of your life that you can't dictate or control that makes our minds go into overdrive.

I'm certain that when I finally do get to sleep tonight/today I will wake up in the morning and wonder why I even posted this.  I did promise to be honest.  And this is where I'm at right now.  Too pooped to party, but I can't stop the music and the beat is making me shake my bon-bon.  Happy dreams and rest filled nights! ~Kami

Thursday, September 6, 2012

Video Killed the Radio.....Active Isotopes & PET Scans

Today was my lucky day! I was chauffeured, got to sit in a lazy boy in the dark, and then ate a DQ french silk pie blizzard.  Yeah baby!! Sometimes having cancer is actually more like a vacation.  Right? Oh wait, let me tell you what I had to do in order to get these lovely events to occur.

Yesterday, while I was out visiting some lovely ladies I know, I received a voice mail.  In the message, I was informed that my oncologist's office had booked me a PET scan appointment for 9 am the following morning at a place in Casa Grande.  Casa Grande is 40 mins (approx.) from where I live.  So much for asking how my day was and what would work for me.  I guess that's what you get for not answering your phone.

I quickly changed my termite debugging (yep, we've had new tunnels show up) to next week, and then called Nana M to see if she could watch G.  I then called my neighbor M to see if she would be willing to go with me.  I have been informed time and time again to not go alone.  So this time I took the advice to heart and made sure I had back-up.  She was more than willing to join in the fun, and thus the adventure was set.

To prep for this scan I was informed that I couldn't eat or drink after midnight.  I was also told to avoid high protein.  To be honest, this is easy for me.  I don't eat a lot these days anyway and what I do's not high in protein.

When we arrived in Casa Grande, I got checked in and then Jerry from Wisconsin came to get me all set up.  I asked him if he liked his job, while he laid out all the tools and vials he needed.  He replied that it has taught him compassion, because for the most part he works with a lot of cancer patients.  I thought about that for a minute and asked if this was hard for him.  He said, "No. Cancer patients are the most hopeful people you will ever meet.  It's inspiring."  I loved it!  After this he got quiet and just worked on getting me set up for the scans.

The first part was another blood draw to check my glucose level, which was 93.  Then I was lucky to have lots of saline pushed into my veins, followed by the radioactive isotopes, followed by glucose, followed by more saline.

This was all done with a:
No, the needle wasn't dirty, but this was the ugliest one I could find.  I hate needles.  They don't bother me in the way that I panic, but I do hate being jabbed at everywhere I go.  So far, the only place not to stick a needle in a body part one.  Man!

After I was radioactive, I was led to a lovely, cushioned dark blue La-Z-boy and tucked in nicely with a blanket.  Then the lights were dimmed and I got to sit there, not moving, for 45 minutes.  Luckily the room had a sweet poster that I could stare at in the dim light:

So after about 2 minutes, I closed my eyes and started to think about all the things I would like to be doing.  Cupcakes were at the top of my list.  I love to eat cupcakes.  It's not my first priority, but it's a priority in my life.  I thought about cupcakes, then cancer, then needles, followed by the tingly feeling in my arm, then I started to drift off to sleep.  Jerry came and woke me up right then.  Such is my life.

I was told I would have to change and Jerry handed me a delightful ensemble.

Imagine my surprise.  I do love how the gowns now tie closer to your right or left side, so that your bum isn't hanging out.  You cheeky bum lookers! I quickly changed and removed all of my rings and earrings, so as not to have any metal flying through the air.

At this point he told me I would have a CT scan, that they would superimpose on the PET scan image so create a complete picture.  My thought was- groovy.  Forward we marched to the CT scan machine, which looks like a donut, made of eggshell colored plastic.  I laid down upon the bench, sweet Jerry shoved my head left and right and into the pillow to get the correct alignment and then told me not to move.  The machine clicked and whirred and within 5 minutes I was done in there.  Onto the PET scan machine!

Back in the Radioactive Ramada I was again told to lie down on the sliding bench, and then kind Jerry again mashed my noggin' into position.  Now, mind you, the room is dimly lit and extremely relaxing.  All the machines even sound super groovy as they do their thing.

He asked me a question, to which I turned my head to answer when he barked at me, "Don't move your head, chest, or abdomen Kami!" I jumped.  Yes, yes I did.  He scared me. Until this point he'd been all mellow and chill, like any guy from Wisconsin is and then BOOYAH! Orders.  He then playdoughed my head back into position and asked me if I was comfortable.  I was not.  However, I wasn't going to tell him that.  My legs were tingling and about to fall asleep, but I was not going to risk another chompy moment with Jerry and so I just moved my eyes and answered, "Yep."

Jerry let me know that I didn't have to keep my arms above my head, like I did in the MRI and CT scan, but that when the machine fed my body slowly into the machine, I would have to move them higher and higher until they were finally above my head; at the end.  He then hit a switch and the bench slid into the machine, jamming into my elbows, since my hands were clasped over my abdomen, while I listened to Jerry's instructions.

"Sorry. I should have warned you that I needed to check to make sure your arms would clear."

Not moving anything but my eyeballs, "S'okay. It only hurt a little bit."

He re-positioned by arms, and then said we were going to begin.  Then he disappeared above my head and into the other room.  The machine hummed to life, and then the clicks and whirring began again.  Every 4 to 5 minutes the machine would go quiet, then clickety-click, before it would slide the bench further into the circular hole.  I moved my arms twice before deciding it would just be easier to reach above my head and let my arms be.  Bad idea.

My shoulders started to cramp after 2 slides into the machine.  At this point I couldn't move them.  Jerry came in to tell me I had 15 minutes left.  Sweet! Only 3 more shifts.  Then my leg started to itch.  Nuts!  I wanted to itch my leg so badly, but didn't want Jerry to come over the speaker and make me start over again.  So it itched.  My lip started to sweat.  The machine slid more and stopped.  It itched.  My eye started twitching.  The machine slid again, then Jerry informed me I was done.  The bench slid backward, I itched that leg for all I was worth and then waited for the feeling to come back into my feet.

One quick change and I was out of there!  M and I stopped for a DQ blizzard; I had french, silk pie (thanks A for the addiction!).  Then it was home again, home again.

After I got home I googled what the transposed image would look like and found this:

Now, clearly this is not me.  I do not have 6 inch wide hips.  Not even when I was 2 were my hips that narrow.  But this is what the image should look like when Dr. B gets a gander at it tomorrow or Monday.

That was how my day went.  It ended with a dip in the pool, and a feeling of satisfaction for how normal I felt when all was said an done.  However, I am hoping that the radioactive isotopes kick in and help enhance my natural born ability to fly.  If you see a UFO near your neighborhood anytime soon, give me a wave will you? I'll be sure to dip my arms just for you! ~Kami

Hope, Faith & T-Shirts

I am able to hold my head up.  I stopped shrinking from checking my mail.  I now check it every day for two simples reason:

1. My sister & friends send super hilarious/uplifting cards in the mail which make me giggle and smile. A lot.

2. I have the greatest support network in the WORLD and never realized it until now.

It has been one month since I learned that I have cancer.  One month since I was sitting in the doctor's office, knees apart, feet in stirrups, looking at the ceiling while my world fell apart.  One month since I drove home with a billion thoughts racing through my mind which boiled down to two ideas: how do I tell my family & how are we going to afford treatment?  One month since I contemplated my worth in dollars.  One month since I cried with my husband over something that couldn't be changed, or controlled.  One month since I fell apart.

One month.

photo courtesy of:

In that month I have been the recipient of so many wonderful moments in time.  Each one of them have built me back up, increased my faith, lifted my hopes, and raised my awareness of all the good that is in this world.  I have had friends give me all that they had, because they said that they would.  I have had strangers contribute to a cause without even knowing who I am.  I have had relatives shout out a rally cry and the world has responded.  Because of these moments I cry a lot more, but they are tears of joy.

The latest of this moments came in an email last week.  In the email was this:

Graphic courtesy of Melissa Blasi & Co.

A graphic that summed up what my friend thought of me.  A graphic that has become my bat signal.  And YOU have responded to the beacon.  The boxing gloves are for fighters.  The diamonds are for Coach, who is my rock.  The butterflies are for each of children who lift me up and give me hope.  The guitars are because if you heard the voice in my head you would know that internally I am decked out in sequins and rocking out to my own rhythm.  The teal and white ribbon is for cervical cancer awareness.  The graphic is for hope.

The woman who put forth the ideas for this t-shirt graphic and then handed them over to her genius friend, has given a voice to all my thoughts and then painted a picture with them.  Melissa has always had that ability though.  Her photographs are stunning.  Her party ideas amazing.  She has a way of seeing the world with an eye that I've come to trust implicitly and respect.  I'm not surprised that this is just as wonderful.

What I am, however, is shocked and amazed at the number of people willing to put this symbol on their bodies and wear them on my behalf.  I mean, yes the t-shirts are fabulous! But to wear them because it helps me? Whoa. Friends from childhood, high school, college, multiple moves.....friends from every stage of my life.  Family who have known me since conception & loved me.  

I realize that this is getting to be a GRATITUDE BLOG, rather than documenting my journey through this crazy maze, but maybe that's the point after all.  To live, to fight, to be thankful, to pay it forward.

I asked my Dad the other day how I could ever repay this kind of generosity and love and his response was, "Kami.  You don't.  You say 'Thank you,' and you do all you can.  Then, when you're given the opportunity to help others, you help them like you have been helped.  That's all you can do."

Please know, wherever you are, whatever you're going through: if you need me, I will get to you.  You've changed my life & my family's lives in ways that I never thought possible.  ~ Kami

Monday, September 3, 2012

How 'IT' feels from my Point of View.

I was asked this week to describe how cancer feels.  It was pretty great, because I was asked by my four year old such a layered question.  At first it had me kerfuffled, because I didn't have a ready answer, so I did the only thing I could think of and said, "That is such a good question, can I think about it for a bit and get back to you?"

"Sure!" was his reply and then he ran off to play.

Later on, while we were coming home from a friend's house I saw this:

This roller was smoothing over the asphalt on a newly repaved portion of the road.  Instantly I had the answer.  I pointed out the window and declared to G, "That's how cancer feels like to me."  He looked at the piece of equipment, while we were parked at the stop sign, and replied, "Oh. Okay. Does that hurt?"

How do I answer that?  As a mother I want to be strong and not show that I hurt every waking moment, because I know it's hard on the kiddos when I can't push through it.  K comments all the time how it doesn't seem like I have cancer, because I act so "normal."  Normal for me is; dancing around the kitchen to music, plopping on the couch and eating a purple otter-pop just because the boys are, movin' and groovin' because it brings me joy.  I will admit, there are days that I cannot just move and groove, because I hurt.  Also, having to smile through this amount of pain can be exhausting.  I find I'm a lot more tired these days than I used to be.  Darn eight ball!!

As I watched the roller do it's job I realized that there are days that it doesn't hurt and that is how I answered  G.  I said, "Yes it hurts, but sometimes it doesn't. I'm lucky to have those days of happy."  He shrugged his small shoulders and then asked, "How come cactus' are so ugly?"  I love kids!!

Each morning I wake up and before I roll out of bed I take inventory of how my lower back feels.  Because my cervix is under attack, my uterus responds by cramping really hard, like its in a vice.

This vice-like grip rolls back and forth across my lower back and front abdominal area, and is in constant motion.  There are lovely days when I wake up and it doesn't hurt at all, in fact, I forget on these days that I am even "sick."

Other days I struggle to keep a smile on my face, and a spring in my step.  Sometimes the pressure is so intense the only relief I find is to sit on a chair with a straight back and then slowly bend forward, stretching those muscles as far as they go.  Sometimes I lie right on my back with my legs in the air and bed them towards my chest.  In my mind I would LOVE to just lay in bed, but then the inner "Get 'R Done" girl kicks in and I move on.

Yes, I hurt.  However, I don't focus on that because there is too much to do.  I am so lucky to be able to be with my kiddos each day.  To cheer on Coach and his team.  To have the time I have to strengthen the ties with the people I love, and who love me.  In short; sure I hurt but I'm happy.

So this is what if feels like to have cancer, from where I'm living.  The time is drawing near when this won't even be an issue.  I look forward to that day and embrace this journey with a smile, a hug for anyone who needs one, and a off-handed joke if I can think of one! ~ Kami

Saturday, September 1, 2012

Faith & Love

Tonight a lovely lady came to my door, bearing gifts.

One gift serves as a reminder of where I have been.  The second gift serves to reinforce where I am.

I've racked my brain for the last half hour trying to come up with a way to say what's in my heart.  What I have received over the past month has been.....inspiring, overwhelming, heartfelt, strange (only in the way that we were TP'd by ninjas), delightful, but most of all faith filling.

I recently spoke in Church about how the worst thing you can do with faith is, well, nothing.  It is true.  The more it is exercised the more it is strengthened.

When this journey began, Coach and I were overwhelmed with the financial weight ahead of us.  We were promised that if we were faithful, and didn't worry about it, a way would be opened.  What was once just a pinhole to peek through, is now large enough to place my whole face in front of and gaze at the light at the end of the tunnel.  It is amazing.

I wish I was better as expressing myself.  I would love nothing more than to simply write each and every one of you a THANK YOU note, which doesn't even begin to cover the way that I feel, or even make a dent in the generosity that you've shown me and my family, but I would love to.  I would love to so that you know, that I know, how wonderful you all really are!

So for now, I suppose this will have to serve as a SHOUT OUT, to all those people who have toiled in the Summer sun during yard sales, looked into their own finances and are going without on my behalf, put cards in the mail at just the right time to remind me that I'm not alone, went through items at home hoping to draw more to the sale, who ran through puddles of mud in my honor, who are still thinking of me, loving me, and praying for me and my family.

You are amazing.  You are known.  You are loved.