The Terrible Awful

I wrote and re-wrote this blog so many times. Sharing the negative sides of my illness is so well… so negative.  So if you want to read something inspiring, skip this bad boy and come back in a few days. I will post more pictures of Bubba.  Promise.

After my fourth (and most horrendous) round of chemo, I ran into some friends who read my blog. They all asked me how I felt. The natural answer is, “So much better than before!”  Then, after seeing the puzzled looks on their face, I realized I never went “there” on my blog.  I never told you how it felt to feel like I was dying from the side effects of chemotherapy.  Maybe I’m being a touch dramatic.  Maybe.  But being a self-proclaimed tough bitch makes me feel somewhat of an expert on just about… everything. (Kidding – this is sarcasm people.)

I wrote this piece on June 5th (just a few days after my fourth round) so that I could go and back read it and remember what it felt like.  I didn’t write this down to share, but for me to read.  There is some sort of coping mechanism that kicks in when horrible things happen that the details fade away so your mind doesn’t have to “go there” again.  Well at least that’s what happens in my mind.  I wanted to get it all down as it was still fresh in my head.

As my good friend said recently, “You aren’t the kind of girl that likes a pity party!”  He’s right.  So I’m not sharing for sympathy, but rather to give my friends insight.

I chose to name is post “The Terrible Awful”.  If you watched the movie or read the book “The Help” you understand.  It was so terrible and so awful I couldn’t even name it.

How the second worse day of my life (so far) felt…  This was three days post chemo (regimen #1 – round 4) and the first day of an upper respiration cold.

Let’s start from head to toe
1) The head:

A) a headache (probably from dry heaving and vomiting)
B) jaw pain from grinding in my sleep (chemo side effect)
C) nose full of snot and constantly blowing (side effect from chest cold)
D) blurred vision (chemo)
E) sores in my mouth (lack of white blood cells)
a.) more sores from biting on my cheeks while eating. I felt like after every round I had to reteach my mouth how to chew.  It’s like my body would forget how to function for a few days.  Sounds strange and like I made that one up, but it’s how I felt.
F) picky mouth – unable to eat food that is too sweet, too salty, too spicy because of soars.  Try sticking to a non-dairy, wheat free, vegetarian and no sugar diet.  Basically I was confined to apple sauce.
G) ringing in my ears (chemo side effect)
H) dry mouth (cannabis and chemo side effect)
I) dry lips (chemo side effect)
J) an emotional wreck (it’s really hard not to think about death when you feel like you are actually dying)
K) neck pain, which I’ve had for a long time (this time it was because of the wrenching feeling you get from intense vomiting)
L) sinus pressure (from head cold)

2) The rest of my body:
A) serve respiratory distress – coughing or more like hacking from cold with loose phlegm that I kept choking on that would make me start to throw up but if I had no food to throw up dry heave (from head cold)
B) port pain – which is on the upper right chest are of my body (probably from accessing it so many times)
C) pain in my right upper abdomen (from the liver cancer)
D) right shoulder pain (from referred liver pain)
Notice the “right” theme here?
E) pain on the outer abs from dry heaving
F) pain on my very low back (side effect from bone marrow expanding – med used to boost blood counts)
G) pain in lower belly (from constipation – side effects from anti-nausea meds)
H) pain in the major joints; hips, knees and ankles (we think it’s from lack of estrogen due to being in menopause because the chemo has shut down my ovaries).

Although it didn’t physically hurt me when chemo put me into menopause (a side effect that no one warned me of), and I’m not complaining about have not having a cycle, but estrogen is what makes a woman – a woman.  I now had no hair, shrinking breasts and butt.  No eyebrows and the very worse for me – no eyelashes.  I’m not Lori without eyelashes.  This news is what played such havoc with my emotions.  It was a harsh reality that I would never be a mom again, my most important and most serious job.  Over being a wife, a daughter a marketing director… I am a mom.  It’s the one task in life I don’t mess around with.  If there is any mark that I leave behind – it’s my son.  At the end of the day, he is the only one that matters.  He’s what makes my sunset and my sunrise.  There has only been two times throughout my diagnosis that Jeremiah has cried.  Once was when I told him that my cancer has no cure.  I’m not sure he knew what that meant, but he could see how hard it was for me to tell him and therefore that made him upset.  The other time he had a hard time going to sleep so I crawled into bed with him.  He started crying and after quite some time he told me that he had just realized that he would never have a brother or a sister and therefore no one to play with all the time.  Because I am a mom, my entire goal in life is to make my son happy and feel supported.  I wanted to give him a sibling, for him.  Not for me.  Not for my husband or any grandparents, but for him.

So there it is friends.  The second ugliest day yet of my life; terrible and awful. The first was losing Briton.

Sassy Pants

Since I am feeling so much better, I have to admit that I am much sassier.  The thoughts below are things that I have thought since my diagnosis when I am talking to people about my cancer.  I never had quite the energy or sass available to “tell it like it is.”  But, now that I do, I have the guts to throw this out there.  Hopefully, you will laugh as much reading it as I did writing it.

XOXO,

Sassy Pants Lori

PS – I hope I don’t piss too many people off.
PPS – If I did in fact piss you off… stop reading my blog.

Just because your aunt had cancer, doesn’t mean that she and I have anything in common.

Just because your cousin’s best friend had pancreatic cancer, doesn’t mean that we have anything in common.

Just because your best friend’s hairdresser went to school with a person who had neuroendocrine cancer, doesn’t mean that person and I have any common ground.

Notice the trend?  My girlfriend Amy is a breast cancer survivor.  She told me early on that everyone’s cancer journey is very different.  Boy, was she right.

If someone tells you that they have cancer, do not assumed they are cured or healthy because they have hair.  The two are not correlated.

If someone tells you that they have cancer, DO NOT ask what their prognosis is unless you are ready to hear the hard truth.  If you still insist and the answer is difficult to hear, be prepared to take the news and DO NOT put any of your emotion on the patient.  This is not fair to them.

For the love of God, do not suggest a miracle food or miracle diet.  Do not put the pressure on the patient to find the product or make them feel guilty if they think the miracle cure is a load of bull.  If they want their opinion, they will ask you!

Quit planting shit into cancer patient’s heads like, “You should really consider going back to work. You might get too bored.”  I’m trying to fight for my life, Jerk Face.  I am in charge of my own happiness.  I am an adult that can make sound decisions.  I’ve made it this far in life.  Let me cope.  It’s one of the only things I still feel like I can do on my own.  I can’t poop without a laxative.  Give me this!

Unless you are paying for their health care or are their personal financier, don’t judge their purchases.  Did I need another high end handbag?  No!  Does anyone, really?  Of course not. It was retail therapy!  Deal with it.

If someone breaks “the Big C” news to you, DO NOT tell them how you think you might have cancer too.  In that moment, it’s not bloody about YOU!  Go to the bleeping doctor and start asking questions for yourself.

For the LOVE OF GAWD, do not complain about your health care problems to a cancer patient.  If you are a fellow cancer patient or a survivor it’s different.  But if you sprained your ankle, put a freaking Ace bandage on it and move the bleep on.  Or do wallow in it, all YOU want, but don’t drag your poor friend in it with you.  They have enough to deal with. (Unless you are my child or an Aggie football player – then let me help you mijo).

If you promise your friend that they can call you anytime day or night, you better answer your damn phone when they call you.  Don’t make promises that you can’t keep.  Move your phone charger next to your bed, leave your ringer on and then answer when they freaking call!

If you have not talked to a person in 15 plus years, sending a “thinking of you” e-mail or card is awesome.  But, DO NOT tell them “if you need ANYTHING at all just call me.”  Dude, I sat next to you in chemistry class 17 years ago.  I’m not going to call you!  P.S. You didn’t even give me your number.

If you feel the undying need to make a food item for your friend.  I can appreciate this as I love to cook.  That is an awesome sentiment!  But, ask questions.  Do you want some food?  If so, what are you eating?  Do spicy foods hurt your mouth?  Do you want to steer clear of sugar?  Are you eating meat?  Showing up with a giant casserole of bacon mac ‘n cheese might be awesome in some households, but not all.  Like the milk allergy, gluten sensitivity, vegetarian one.

This one is personal and probably does not apply to all cancer patients.  But do NOT tell me, “God only gives you what you can handle.”  Tell God I said mercy and I CANNOT handle any bloody more!

Or my favorite… “Everything happens for a reason”.  No, it does not!!! Why on Earth would a mother, a professional, a 33 year old get an incurable cancer?  This did not happen for a reason.  This sucks and it’s unfair.

Here is a list of appropriate things to tell someone who has cancer:

If you haven’t seen that person but you know they have cancer.  You can say…

  • I just wanted to let you know you are up against a tough battle.  I’m in your corner whether silent or loud.
  • I’m rooting for you.
  • What can I do to help you?
  • I will send all of my positive energy to you (whether it be in prayers or sage burning – either one is fine).

If you are surprised by this person’s news.  You can say…

  • I honestly don’t know what to say in this situation.  There are just no words.  I’m so sorry.
  • I’m sorry that you are going through this.
  • You don’t deserve it.
  • Fight the fight – you warrior you!
  • The mind is a powerful thing.
  • Go. Fight. Win.
Then hug them.  Like two arms, comforting, squeeze, take a second and act like you are truly sorry.  

That is all.

Soap box is closed.

The Bitch is Back

Howdy friends – I’m sorry I haven’t posted much recently.  It’s mostly because I started back at work!!!  It’s part time, but I’m so excited.  I’ve gotten to fall in love with my job and wine all over again.  It’s so freaking cool.

When I talk to most of my co-workers and work acquaintances they are excited that I’m back.  I’ve warned most of them not to be too excited, I plan on stirring shit up because ladies and gentlemen – The bitch is back!

PS – Round 3 of Regimen 2 (aka 7th round of chemo) is done.  No biggie!

The Highlight Reel

This week was FULL of exciting news.  It appears that I’ve got some new readers due to the incredible piece that S. Derrickson Moore so eloquently wrote.  I was humbled and quite honored by the article.

Just in case my old readers haven’t seen it, here is the link…

http://www.lcsun-news.com/Health/ci_26608638/Lori-Paulson-faces-cancer-with-courage-humor-and-a-blog

I thought I would sum up this week. As it was most definitely one for the books!

Thursday I participated in the “Tough Enough to Wear Pink” fashion show.  My eyes were opened by many things; some awesome and some not so awesome.  The not-so-awesome part was overshadowed by the awesome.  The very best part was when a group of women, mostly survivors, all confessed to only continuing chemo because they were moms and they were doing it for their kids.  I thought I was the only one!  The best part was that they were all survivors.  Technically, I am too but these women were cancer free.  It was inspiring.  My fashion show partner was the sweetest woman that might be my biggest fan.  She grabbed the news anchors to tell them my story.  I wonder if she will moonlight as my manager :).

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Think I’m “tough”? I don’t hold a candle to this beautiful warrior.

After the fashion show, I came home checked the mail and found this letter below.  I… umm… don’t really know what to say.  So naturally I called one of my besties to freak out with.  He said, “Babe, we have a serious problem.  It’s the same night as the Cruces v Mayfield game.”  He is right – a serious problem indeed!  Next time the President’s office should really consider contacting my booking agent. I’ll let it slide… this one time.  Check it out.

Spirit Award

During a hydration session, I got the newest results of my tumor marker.  For those of you that don’t know what a tumor marker is… it’s a blood test that measures the protein/hormone/chemical that the tumor(s) produces.  When I was diagnosed and throughout the first regimen it ran in the 400-600 range.  After the second round it’s now down to 63!  PS – I am almost done with my third.  Yippe!  PPS – I tried to simplify this result as best I could, to try to explain it all would be lengthy and boring (and who has time for that?).

Friday night, I told the NMSU football team my story.  My goal was to tell them what it means to be tough.  Of all the week’s highlights, this was the one I was most nervous about and the one that was most important to me.  Although hard to judge the impact, the hugs and love I got after the speech felt pretty great and lead me to believe that it meant something.  My newest and latest mantra with them is #huglife.

Although my dear sweet Aggies lost, I will refuse to give up on them – just like I will refuse to give up on my cancer.  One small victory was that my sweet #21 had two touchdowns.  This was how I decided to sport pink.

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They bring the tough. I bring the pink (hair!).

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In my humble opinion, we had the most awesome hair on the sidelines!

Fright night I got re-tweeted by Doug Baldwin, WR for the Seattle Seahawks.  Wow, right?  Like, wow. Wow. Wow!  Then for the next two hours I preceded to internet stalk the poor guy.  He looks like an incredibly classy person that just earned my respect and gained a fan.  Until, he plays my Packers.  Then I’m on their side.

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After the game, one of the player’s mom’s decided that she was going to “do something” to support cancer survivors.  She gave me an incredibly generous (way too generous) check and after stewing about what I was going to do with it… I decided to keep it.  It will pay for the meals that I cook for my Aggies.  No, it doesn’t advance medicine. No, it’s doesn’t pay for my medical expenses.  But, it feeds souls.  It will fill the bellies of some of my favorite humans on this earth and it will fill my soul with love and satisfaction.  Lucky me.

To sum up the entire week, I felt so incredibly loved.  I’m convinced that everyone once in their life deserves to feel this loved.  Even if it’s just for a short time.  Lucky enough for me it’s lasting for quite a long time.  I’m wondering when you might start getting sick of me?

All my love sent back,

L

Am I Tough Enough to Wear Pink?

I was driving home thinking about how I was going to write this post when I got a message with this video in it: http://www.tout.com/m/1n0z03.  It’s gonna make writing this blog post so very easy.

If you know me at all, you know how opinionated I am about certain topics.  Just today I went to Dick’s Sporting Goods to buy my son a pink pair of football socks for him to wear during the month of October.  I read every package to see if Nike, Reebok or Umbro was going to make a donation to any cancer-related organization.  Of course, none of them said they would.  It made me think – why are we spending our money on pink socks?  So that some investment group can make record dividends in the month of October?  I also got a note home from the Las Cruces Public School system for their “Pink Week” and the cynical side of me said, how does this actually help?  Am I even ready to start talking about breasts to my 8-year-old?  Poor little thing already has cancer in his everyday vocabulary.  At the school he attends, 85% of the students are either on free or reduced lunches.   How are parents with limited funds going to afford this?

I can’t answer these questions, but I can tell you how it affects me.

By now, you know my love and affection for the NMSU Football team.  You also know that I am getting treatment at the MMC Cancer Center.  Since 2007, Cowboys for Cancer Research and the Tough Enough to Wear Pink campaign have partnered together to raise over $3 million dollars to fund and support cancer research at both the University of New Mexico and New Mexico State University. Three million dollars.  When Las Cruces decides they are behind something, they are passionate about what they stand up for.  This little community has decided that they will support these organizations, and it just so happens to be at my very favorite platform, which is around an NMSU football game.

I only spend my money and my time on organizations and people that I believe in.  And I believe in both of these.

Now, just between you and me, I don’t even like the color pink (my closet consists of black, white and crimson).  But, I like what it means in our community.  I like that on October 2nd, I will be in a fashion show where the proceeds stay in our state to help the future of medicine.  Will any of these funds actually benefit me or my type of cancer?  Probably not, but it will effect someone down the road that might be my neighbor or my friend.  I wouldn’t wish what I am going through on my worst enemy.  So coming together to watch a silly fashion show or not-so-silly football game is what pink means to me.

So, I guess I answered my own question:  I am tough enough to wear pink.  Come to the game and check out how I choose to wear it – it’s a surprise!  But the most important part for me is cheering on our Aggies to a victory, as this is a conference game and so much is on the line for them… aside from just those pink jerseys.

Thank you Las Cruces and Southern New Mexico for opening up your arms and wrapping them tightly around me.  This week I will take all of your love and pour it back into those the Aggies.  We are indeed tougher together.