Surviving Mesothelioma: Heather’s Story

I’m taking the blog in a different direction this week to educate my readers about a couple things that are way more important than competitions or workouts.

First off, September is Blood Cancer Awareness Month. This is something very near and dear to me since my mother passed away from Lymphoma over a year ago. You can donate this month (or anytime) to make a difference right here at LLS.org. This is an organization I trust and continue to support in the research that they do for treatments and a CURE for blood cancer.

You can learn more about Leukemia and Lymphoma on their FB page or their website. I know everyone heard about ALS these past few months due to the Ice Bucket Challenge and that’s wonderful. Education is very important when it comes to diseases that don’t get a lot of attention.

I rarely use this blog to talk about my own chronic condition: Ulcerative Colitis. I’m literally sitting here typing this at the Cleveland Clinic getting my Remicade infusion, the ridiculously expensive treatment so I stay in remission. I get this every 8 weeks. But I never talk about it too much. Perhaps that needs to change…a blog post for another day. Not today though.

Today is about someone else. Someone I have never even met or spoken with. Today is about Heather Von St. James.

Today, September 26th, is Mesothelioma Awareness Day. Yes, just one DAY dedicated to this disease that I would be willing to bet many people don’t know about.

I’ll be the first to admit my limited knowledge of this disease: I heard it mentioned on commercials for attorneys looking for patients who could be part of a class action law suit. I knew it had something to do with asbestos. And I knew it sounded bad.

Yep…That’s the extent of it.

When we don’t know someone affected by a disease, do we care? Should we care? No one expects us to be experts at every chronic disease, right? That wouldn’t be realistic. But, when someone we love and care about comes to us and says, “I was just told I have _____________,” what’s the first thing we do? We do as much research as we can! We find out the causes, the treatments, the survival rates, who’s the best doctor in town or the state or the country that can help.

Well, imagine someone just told you that you have Mesothelioma. And now read Heather’s story and see what you can do to spread awareness. I’m doing a small part by sharing Heather’s story. You can share it today too and educate a bunch of people too when you’re done reading it.

That’s called spreading the knowledge. That’s called making a difference.

HVSJ

Heather Von St. James was diagnosed with Mesothelioma at age 36. Same age as I am.

Imagine being told you have 15 months to live. That’s what happened to Heather on November 21st, 2005. And I sit here in this hospital right now picturing a doctor coming in the room telling ME, right now, “You have a extreme form of lung cancer. You have 15 months to live.”

What is the first thing I would do? I can’t even imagine…I suppose I would want to know how I got it.

Heather developed this disease because her father worked in construction. You read that right, her father worked a job that caused this disease because he would come home from work and had some dust on his clothes. Heather would play outside and put on his coat sometimes. That’s the gist of it. Something that sound so simple, almost an afterthought, caused this awful disease.

You may have been one of those people who associate asbestos with the older generation and so “not your problem.” Well, Heather was just 36 as I mentioned when she was diagnosed. Turns out, diagnosis in women is on the rise because of this very problem: They have contracted it from their parents (father’s, most likely) from second hand exposure.

This begs the question – How does this stuff even get into our bodies and lay dormant for so long?

Asbestos enters your body and settles into the linings of your lungs from all the furniture, floors, walls and insulation sheathings where it was “living.”  It can lie dormant for up to 50 years, DECADES, before showing signs of Mesothelioma to those who have been exposed, at which point the risk is critical.

Here’s where the story goes from tragic to a fight: Heather had just given birth 3 months prior to her daughter Lily. She’s a brand new mom. Her husband a brand new father. Imagine these parents being told this news. This horrific news. I’m trying to imagine it now and I just can’t grasp it.

Lily, born August 2005
Lily, born August 2005

What are the facts about Mesothelioma? Well, upon doing even the most basic Google search, Heather probably read that she was one of the 3,000 people diagnosed with this disease per year. It doesn’t sound like such a large number, and I suppose it isn’t. But just because it’s rare doesn’t mean it shouldn’t get attention. When something is rare, what happens to the funding for treatments or cures and studies? Probably not a whole lot of those going on because the awareness is minimal. But that’s why sharing Heather’s story is so crucial and so important.

A quick word about asbestos: It’s not banned in the United States. Yikes. Another startling fact: Over 30 years after its’ rise in the industry, asbestos remains as the most frequent cause of occupational cancer. Despite this, the U.S. continues to service out 30 million pounds each year, in homes, schools, and commercial buildings. So something that we once thought of, and continue to think of as an old problem, is a silent predator.

surgery
Surgery day – or as Heather now calls it “Lung Leavin’ Day.”

After Heather and Cameron realized the survival rate was so low, they decided what was most important was to find the best doctor.  That’s what you do when you’re ready to do battle; arm yourself with the best weapons. They found the best surgeon who was able to give Heather her best option for survival: extrapleural pneumonectomy. That’s a the technical term for Lung Removal.

On February 2, 2006 Heather underwent this long, intensive operation with a 55 percent complication rate and a 3 percent risk of death. Her husband told her, “Lily needs her mother. That’s the way I kept Heather’s hope up.”

Heather took 3 months to recover from the surgery. And today, 8 years later, she is a voice of hope for those that need one so desperately.

She says she doesn’t keep her cancer a secret from her daughter. Lily knows “Mommy had cancer” when she was a baby. But now she knows that “Mommy is a fighter and a survivor.”

Cam_Lil_HVSJ

Heather’s story has been shared many times by many bloggers and by Heather herself on social media and her webpage. It just goes to show that 1 person can make a huge difference. Even by sharing my blog today, you are making a difference in someone’s life. You are spreading that message of HOPE. She says she’s a Voice for the Victims. But I like to think she’s a voice for the FIGHTERS. 🙂

I picture myself, in that hospital room, getting a visit from a doctor. He tells me the worst news possible. In my case, I have an increased chance of colon cancer. What if I was told that today? I’d be terrified. I’d probably panic. But after the anger and stress and sadness and despair would wear off, I would hope that I would start educating. I would start sharing my FIGHT with you. With anyone who would listen.

Because that’s what survivors do.

Do yourself a favor and check out these resources for more information on Mesothelioma facts and treatment:

http://www.mesothelioma.com/treatment/
http://www.mesothelioma.com/mesothelioma/

And please follow Heather on Facebook and Twitter.

Thank you for SHARING and taking part in Mesothelioma Awareness Day!

Oh Sh*t!: My C-Diff Saga

This post mentions shit alot.  And by shit I mean real shit. Like that stuff that comes out of you.  It’s one part humor, one part really serious, and one part PSA.  If you don’t like toilet or poo humor, you will not want to read this.  But if you looooove talking about shit, well then read on and try not to crap your pants.

I don’t really discuss my Ulcerative Colitis on here because it has little to do with fitness but it DOES have quite a bit to do with health. Digestive health to be exact.  And Ulcerative Colitis is a major issue. So here’s a snippet of one of the worst flare ups I’ve ever had with this crap disease (pun intended)…and how it turned into something much worse.  And how I recovered and came out a much stronger person.

Let’s get the basics out of the way real quick so we can get to the nitty gritty. What is Ulcerative Colitis? Here’s a Wikipedia definition but I describe it to people as something that exactly how it sounds: An ulcer in your colon. Very similar to Crohn’s Disease.


 

Let’s rewind the clock to 5 years ago – Mid July of 2009. I had stopped taking my UC meds (stupidly) because I was fine. I had been “battling” UC since I was 13 years old and for about 75% of the time, I was always in a remission type of state. I couldn’t even remember my last flare-up.

I was also really cheap. I wanted to save any $ I could and it just seemed silly to pay $60-$80 a month on meds that I didn’t need.

I had been working as a Personal Trainer for almost a year at a gym just a little over a mile from my condo. I was training for a half marathon. I was going out a lot, enjoying another summer in Chicago hanging with friends, going to concerts and festivals and the beach. Life was good!

I’m not exactly sure when a small flare up developed but I’m sure I just tried to take my meds to get it to just go away. Around the same time my Mom was experiencing strange symptoms as well back home in Cleveland. She was going from doctor to doctor to figure out what was wrong. And being the good mother that she was, I knew she would be worried if I mentioned how I was getting worse and worse with my UC. So I didn’t tell her or anyone what was going on. I told my GI doc at the time and he just switched up my meds a little bit.

But that didn’t help.

When left untreated, a flare-up (bloody stool is the MAIN issue here) can basically leave you completely worthless. You can’t go anywhere. You’re stuck at home because you’re either in constant pain or you can’t function without being near a bathroom. When you don’t have an office job, you cannot possibly do work from a bathroom. Just doesn’t happen.

Now, being a Personal Trainer and having a flare up with UC is bad enough. But little did I know that what was happening to me was actually a bacterial disease called C-diff forming.

C-Diff is basically one of the worst bacterial diseases you can get. It kills 14,000 people a year in America alone. It leaves you completely wasting away, it’s been known to kill people who let it go untreated or who already have compromised immune systems because of their age, and it’s actually quite common in nursing homes and facilities where patients aren’t washing their hands and are getting sick from each other.

But one of the most common ways it’s contracted is from taking antibiotics for something completely unrelated and getting a ridiculous amount of bad bacteria in your stomach. Ya know those commercials that Erin Andrews from ESPN does? Yeah we should ALL be taking probiotics. Those help to balance the good flora in our gut and helps keep really bad icky things from happening to you. So do yourself a favor go get some at your nearest drugstore.

Back to the shit…


 

As the days and weeks went on and the flare ups got worse and worse, it became clear to me this was not just a flare up. Something was seriously wrong with me and I didn’t know what to do. And being a Personal Trainer is not exactly the ideal occupation to have when you’re spending half the day in the bathroom. And everyday I was trying to train my clients who have no idea what my deal is and I have to say “Ummm I’ll be right back” repeatedly as I BOLT as fast as I can up a ton of stairs to get to the locker room to run all the way in the back to where the bathrooms are.

And here’s the worst part that anyone with Crohn’s or UC will tell you: You get all the way there and guess what?

You don’t have to go.

It’s just the FEELING of going that you have. CONSTANTLY.  But you don’t go. Notta. Nothing. Zilch.  You lose complete control of your body and I don’t mean you start convulsing or anything but you’re at the mercy of your stomach and your brain trying to communicate with you. Here’s what I imagine my stomach and my brain were saying to each other for 3 awful weeks of my life:

Stomach:  Ummm…you better find a bathroom because shit’s about get REAL.

Brain – Dammit I’m at work, can’t this wait??

Stomach – NO way!  I think there’s something percolating.

Brain – Seriously?? Fine…

Stomach – Better hurry!!

Brain – Aww crap. Here we go…

Stomach –  Hey guess what? I totally tricked you. There’s nothing there. You haven’t eaten anything in like, a day. HA!

Brain – Oh come on!!! I just rushed in here for nothing!

Stomach – I know…it’s hilarious right?

Brain – I hate you. You’re an asshole.

Asshole – Nope that’s me. And hey I’m at the end, this isn’t my fault. Tell it the large intestine, he started it.

Stomach – Hey Brain!!  Gotta go again!!!

Brain – Sigh….come on. I was JUST in there…what am I supposed to do? Just STAY in here?

Stomach – Not my problem!  But you better just hang out in here.  This could go on all day, hahahhahha!

Brain – This is exhausting.

So that’s the conversation my body had with itself for about a month. End result? Two accidents. Thank the Lord I wore BLACK. (and thank you Oak Park Fitness Formula Clubs for making black pants the required uniform) because walking down the street and realizing that you are a grown adult and THAT just happened?!  Not something you can really discuss with anyone.

“How was your day?”

“Oh ya know the usual…Pretty much a hum-drum kinda day, did some laundry, went to the drugstore, shit my pants, trained a few clients…”

Awesome.  And the second time it happened I was wearing WHITE.  White pants. And I was on the EL praying to God to please please please don’t let this happen to me in public. PLEASE let me get to my house in time. OMG I cannot shit myself in WHITE pants on the damn subway. I just cannot.

I made it home in the nick of time. But that was the last straw. I called my doc and said “Something is wrong. This is not normal for a 30 something year old woman to do twice in one week. This isn’t normal for ANYONE! What is going on with me?”

He wanted to put me on new meds but I didn’t think it was going to work. I felt fatigued. Weak. Lethargic. I was always tired and took naps but never felt well rested. I was always thirsty. Always. But water didn’t do anything for me. So I drank pop. Then I drank OJ. Then I drank Gatorade. Then I drank more water. Half empty bottles of all of this sat by my couch. I called my sister and told her “I think I’ll just wait this out.”  She said I sounded terrible.  Like there was something in my voice that told her this was more than just feeling sick. I said I felt a little dizzy and was going to lay down for awhile.

I called the doctor instead and said “I think I need to admit myself into the hospital.”

I’m so stubborn I didn’t even ask for a ride to the hospital. I took the EL two stops and shuffled my way into the ER. I sat down and told the dude my problem.

I was admitted and given an IV by the nurse who said “Honey…you are completely dehydrated. I can tell just by looking at your veins.”

It made sense…The half drank beverages sitting in my fridge, the confusion, the lethargy, the weakness.

The minute she gave me fluids I felt much better. I even got a sandwich and started to feel like I was going to be okay.

That lasted about an hour before I felt back to feeling awful.

I got weighed in at 119lbs. I never really weighed myself but I know for a fact I was at LEAST 135lbs prior to getting sick.

I got into my room and thought I would just stay there until they tell me what’s wrong with me.

 


 

I spent the rest of the night trying to coordinate with my family how they would come see if. I told them they didn’t have to, that I would be fine, but they insisted. My Dad wasn’t working at the time so he drove the minute I told them I was going to the hospital and arrived from Cleveland to Chicago shortly after visiting hours were over.

I don’t think I’ve ever felt so awful in my life. Not knowing what was wrong with me, assuming it had to be either colon cancer or stomach cancer, completely fatigued and out of breath just from going about 10 feet to the bathroom (probably didn’t actually GO TO the bathroom just walked in and walked out because that was the routine for so long).

Here’s how I tried to explain this experience to people:

Think of a time where you felt really nauseated. Now think of a time when you felt like you were so hungry you would eat anything. Now think of a time when you were so hot and thirsty you felt like you were hallucinating from being dehydrated. And now think of the last time you felt like you could sleep for days. Got all that? Now picture trying to eat, and you can’t even chew or bite into anything, not even jello, because the nausea comes right back.  And now think of how it feels when you have to go to the bathroom or else you’re going to explode…and you don’t. And now think of getting some sleep and lying down and closing your eyes, but you can’t do that either.  That’s how it felt for 6 days straight.

In the meantime, I couldn’t text or talk to anyone because the words on the screen and just picking up the phone to talk made me sick to my stomach and dizzy.

When people do came to visit they have to wear those hospital gowns because I’m now quarantined.

The nurses come in every 4 hours to take my temperature and draw my blood. So if I wasn’t weren’t awake then, well, I am now.

I was given a menu of items for breakfast lunch and dinner and would circle what SOUNDED like good food, but I couldn’t keep anything down.

Three days after being admitted, I am officially diagnosed with C-Diff. You’d think I’d be relieved, Finally I know what’s wrong with me!  I was familiar with the disease because my Mother had gotten it in 2007 when there was an outbreak in Northeast Ohio. She got it from taking an antibiotic (although most doctors won’t admit that).

I probably got it because I made a very stupid mistake: I stopped taking my UC meds. So when I did get a flare up and didn’t do anything about it, it just got worse and worse.

The moment my Mom was able to come see me she flew out of Cleveland and came directly from the airport to see me. She walked in the room holding a stuffed elephant and I broke down and told her “I have C-diff!”

I don’t really remember HER reaction as much as I remember crying for no real reason. I think it was a combination of knowing I could have probably prevented this had I just taken my meds but also just emotion from seeing my Mom. Who doesn’t want to see their mom when their sick?

The next couple days just sort of blend into one another. I had to wait until the meds they were giving me somehow proved I was getting better. They gave me Flagyl, pretty sure through an IV.  (By the way, I nicknamed my IV stand.  I called it Ivy. You know you’re losing your mind when you’re naming your IV stand. I would say “Let’s go Ivy, we gotta walk to the bathroom now”…and I would roll it with me to the bathroom where nothing would happen of course and then I would roll her on back with me to the bed where I would plop down and feel like I just ran a mile).

I’m pretty sure talking to yourself comes hand in hand with being sick and in a hospital.

I would pass the time by either listening to my iPod or just trying to sleep or a combination of both. Now, listening to the songs that I listened to in the hospital bring me right back to that hospital bed and that time in my life. There was nothing for my parents to do but just sit there with me and I felt bad that they couldn’t do much. They wanted to help but there was nothing to say or do. I just wanted to sleep. But slowly the feelings of wanting to sleep went darker to feeling of just wanting to die.

I vividly recall lying in the bed, wimpering from pain, and telling my Mom I would never wish this experience upon anyone. That I would rather be in labor pain and giving BIRTH instead of being in the current situation I was in. And this is coming from someone who doesn’t want kids. I wanted to FEEL something other than the emptiness and weakness I was experiencing at that moment.

I felt so weak and sick that I looked up at her and said:

“I just want to die.”

And I meant it.

The minute those words were spoken my Mom came over and sat down next to me on my hospital bed and said “Don’t say that. Don’t ever say that, it’s going to be okay.”

This is an important part of this story because what I haven’t told thus far is that my Mom had been sick for months without knowing what was wrong with her. I called my sister and my Dad when I was feeling sick because I didn’t want to upset my Mom. She was going through something much worse that I didn’t know about…But I would find out in just a matter of days.

I don’t know how it was determined that I was okay to go home. I think I managed to finally eat something without throwing it up.

I don’t know what I weighed when I left that hospital but I THINK it had to be about 109lbs. Looking at pictures of myself (this is 2009 folks, Selfies weren’t popular yet) I think I weighed about 115lbs  when I got back to work here a month later.

My Mom and Dad stayed with me for about a week while I was recovering. My Dad stayed longer since he wasn’t working and I DID need someone with me while I tried to regain my strength.

Before my Mom went back she had a chat with me. She came in my room (where I practically LIVED for the next month since there was nothing to do but sleep) and said she had to tell me something important. I had a feeling it wasn’t good news. She wanted to wait until I was out of the hospital to let me know: She had just had a biopsy and found out she had lymphoma.

I don’t really remember being shocked because we all knew something wasn’t right with her. I think I was too weak to really have any real reaction. It wasn’t until way later that I thought about how I sat there and told her I wanted to DIE that I realized how unbelievably selfish I was. I had a serious disease, no doubt. But my poor mother had found out she had cancer. And here was her daughter basically whining and complaining that she wanted to end her life because of a little nausea.

While I was still recovering from the C-diff weeks later (it took me awhile to be able to walk from my bed to the kitchen to the couch without feeling faint, let alone walk to work which was a little over a mile away) I decided I was going to move home. Even if my Mom was going to get chemo and be okay, I wanted to be there to take care of her and be with my family again.

I returned to my PT job at my gym shortly before Labor Day but was too weak to really give any client a good session. My muscles had completely atrophied and I was still so weak. I developed a bad case of GERD or Acid Reflux where I felt the constant need to spit every few minutes (lovely, a real great way to get clients let me tell ya) and finally came back in mid-September to tell my manager that I was going to leave for good.

It was time to come home and be with my family.

Nothing like a serious illness to make you re-evaluate the important things in life.

So I had a party, invited everyone I had ever met in Chicago, put my condo up on Craigslist for rent, found a tenant within days and was home by the second week in October.

3 months later my Mom was given the all clear that she was in remission. We celebrated on Thanksgiving that year and she got two and a half more years of life. And we enjoyed every minute of it.

But I still think about that time in the hospital. I still think about how long it took me to recover – to even walk down the hall of my condo building wasn’t possible for days. How I was out of breath so easily and so weak for so long. How I would lay on my couch and watch reruns of Perry Mason and Twilight Zone, wishing I could feel strong enough to go back to work. How my first REAL meal after I got my appetite back was a Medium Domino’s Pizza that I ate in one sitting all by myself. How I appreciated FOOD so much more after that. How much I missed running and never ran that half marathon…but I ran a full marathon less than 7 months later – raising money for Lymphoma.

My Mom was right – everything did turn out okay for me. I started a new life back home in Cleveland and I don’t plan on leaving home anytime soon. I have a great job, I’m on a very good medication for my UC that I take intraveneously every 8 weeks, I’m healthy, I’m happy, I’m alive and I’m okay.

Life can be kinda crappy at times. But having been so sick at one point in my life, and watching my own mother pass away, death isn’t something I would ever WISH to happen to me before I’m ready.

As simple as it sounds, Life is really a gift. I will never throw it away over a little bit of shit.


Want to know more about C-Diff? Check out

Want to know more about Crohn’s and Ulcerative Colitis? ccfa.org

Want to know more about how awesome probiotics are? www.lifetime-weightloss.com/blog/2010/8/1/benefits-of-probiotics.html

Here’s to your GUT health. 🙂

 

 

Mom Comes Home

Momandme1

My mom passed away one year ago today and ever since, I have been adding a little bit here and there to this blog post, knowing I’d want to publish something on the anniversary of her death.

At first I was going to write about her life.  And maybe someday I will.  But now right now.  Today I want tell you the journey she took to her final resting place.

She was diagnosed in August of 2009 with a rare type of T-cell lymphoma.  She had already been displaying strange symptoms since March of that year but it took months of tests to finally diagnose her.  After 6 rounds of chemotherapy, she was declared to be in remission by her oncologist.  We celebrated that Thanksgiving.  It seemed it was a miracle, although we were warned this type of cancer could come back in a few years and chemo might not work.

That news did not deter my Mom from living her life as “wild” as a 62year old could.  She spent as much time doing things she enjoyed and said YES a lot more than she said NO.  She would babysit my nephews more often.  She would attend my nephews baseball games and come with us to Cedar Point and went to every wedding and graduation party she was invited to.  Lots of lunches and dinners with friends and family as often as possible.

justmom1

In June of 2012, she started having symptoms again.  This time, all the tests came back negative for lymphoma.  But it was obvious to all of us, and her, that something wasn’t right.  This time instead of a cough and a rash, it was stomach pain.  And back pain.  And loss of her voice.  Although her voice never completely went away, it was probably one of the worst things to happen to her.  See, she was quite the gabber.  She talked to my sister every morning over the phone for years!  She’d chat with friends over lunch, she’d chat with her customers at the bridal store she worked at.  That was all gone once she lost her voice.  Not to mention the pain she was in was heartbreaking to witness.

Now, I’d come downstairs to see her in the recliner, sleeping, or trying to sleep, and in pain.  The worst was the feeling of hopelessness as you watch someone in pain and there’s nothing you can say or do to help.  Too sick to go to work.  Too tired to go anywhere.  Too weak to even move off the recliner.  This went on for most of the summer until August when removal of her lymph node confirmed that her cancer was back.  It had been a frustrating time since every other test did not show the cancer.  But her oncologist said it was the type that hides.  Well, it stayed hidden for months.

The chemo this time around was changed slightly to treat the cancer.  And after a few treatments it seemed to be working.  As anyone who knows someone or is on chemo will tell you, it’s like a rollercoaster.  She had her good weeks when she was able to have enough energy to shop and visit with friends and she had bad weeks when it took many days to recover from the chemo.

momsleigh

By the time Christmas came around, it seems as though she took a turn for the worse.  It became harder for her to breathe and she seemed weak.  She didn’t want to sleep for fear of not waking up.  She slept downstairs in the recliner and there was always someone with her at all times.  A few days before Christmas she went into the hospital and it didn’t look good.  We weren’t sure she would be home for Christmas at all.  But she was determined.  She knew the situation wasn’t good but she also knew she didn’t want to die in a hospital.  She insisted to her doctor that she was going to go home.  I believe his initial reaction was, “We’ll see.”  But my Mom was quite stubborn.  There was no way she was going to miss Christmas.

The situation was so grim, that she actually sat with me in the hospital and told me her final wishes.  It wasn’t really a conversation.  It was definitely one-sided as she spoke and I cried.  She told me the dreams she had for me, she told me how she knew everyone would be okay but that we should look after each other.  She did say something quite funny actually:  “Michelle, oh you don’t need any man in your life so you’ll be okay.”  🙂  Thanks Mom, ha!

But she also said some sad things like “I don’t think Sean will remember me.”

“I don’t have any regrets in my life…but I do feel like I’m being cheated a little bit.   I really wanted to watch Matthew play baseball one more time.”

“I’ve never been afraid of dying and I’ve always been a faithful person…but I’m wondering where is my faith right now?”

“I know this last round of chemo won’t save me.  But if I could just have a few more months…”

Well, God heard her prayers, all of our prayers.  Because the next day she got the all clear to come home.

IMG_0295

The first thing she insisted on doing when we got her home was to finish wrapping the Christmas gifts.  She could barely lift the scissors and the tape but she insisted.  She was adamant about celebrating Christmas.  It was always her favorite holiday, especially to see the look on my nephews faces as they opened up their gifts.  And us too.

As we celebrated Christmas that year, it was clear this was going to be her last.  You didn’t want to think about it, you didn’t want to believe it.  But you knew.  And you knew that she knew.

January and February of 2013 were pretty good.  We actually had hope for a little bit.  The best was when her voice came back.  I came down the stairs to the sound of my Mom on the phone with my Aunt.  I said, “Your voice Mom!!! It’s back!”  She was glowing, she was so excited.  It was the first REAL evidence that there was some hope here.

But, most of the time, you could tell she didn’t want to get her hopes up too high.  None of us did.  I always prayed for her to be healed.  To be cured.  I couldn’t help but think, “Are my prayers just being ignored?  What gives?”

Mom had one more GREAT day.  She got to spend it with my aunt at the casino downtown and eating Paczki on Fat Tuesday.  She said to my Aunt,  “This was the best time I’ve had.”  She took this picture of her in the car, with her paczki of course.

Fat Tuesday with a Paczki!
Fat Tuesday with a Paczki!

It was literally a week or two later that she was fine one day and bad the next.  You always hear about how that happens and you always think, “Oh I’m sure they’re exaggerating.”  No really, she was really okay one day and the next day she couldn’t breathe.  She went in to get the fluid drained from around her lungs and her heart and while she was there she sent all of us a text that said: “Hospice worker coming at one. Can you come?”

Well that pretty much knocked the wind out of me.  It was one thing for one of US to think about hospice.  But when SHE is initiating it…that changes the ball game.

Ironically, when we all walked in around the same time, my Mom looked better than ever.  She looked like she never had cancer.  It was the strangest sight.  The hospice worker even looked at her like, “Ummm…are you sure you need hospice?”

But that was our Mom’s gift to us.  She knew none of us would ever recommend or even say the word hospice unless she said it first.  It had to be her decision.

It was clear from talking to hospice that Mom wasn’t quite there yet and she had options.

She came home the next day though and we thought, “Okay maybe she has more time than we thought.  Maybe this isn’t so bad.”

About a week later, she was back in the hospital again.  This time she couldn’t breathe again, and needed to be drained, again.  But as soon as they drained her, shortly thereafter, the fluid was back.  It was getting to be too much and they couldn’t keep up with the drainage.

She needed to be put into a wheelchair to get back into the car.  And when she came home we needed to help her into the house.  That’s when she changed right in front of my eyes.

Her voice became tiny and high pitched, and she said her legs felt “weird” and she said she was ashamed and embarrassed that she needed a wheelchair to get into her own house.  We told her not to worry about it but you could tell the life that was inside her was diminishing.  I looked at her for the first time and she looked like she aged 20 years in that minute.

Two days later she asked for hospice.  She sat there with me and told me “This is no way to live.  Call hospice, it’s time.”  I didn’t argue with her.  I don’t think I even cried.  I was more just in shock  that this was happening.

I stopped praying for healing or a cure.  I knew it wasn’t because God wasn’t answering my prayer, He was trying to tell me I was praying for the wrong thing.  This time, I prayed for her to go home.

3 days later, she took her last breath with my Dad at her side.  Those three days were quite possibly the most beautiful moments as well as the most awful three days of my life.  No one should have to see a loved one dying in front of them.  But there were moments from that weekend I will never forget and some day I will write a nice long post about it.

Until then, I take comfort in the memories I have of my beautiful mother.  The notes she left us that we found at Halloween and Thanksgiving and Christmas.  The pictures of her around this huge empty house.  The sound of her voice and her laugh that I still have on saved voicemails and videos.  And of course, the look on people’s faces when they speak about her.  I have given up trying to tell people how amazing she was.  They simply will never know her and as much as it hurts and pains me to know that YOU will never know who she was, it’s okay now.  She lives on in me and my sister and my brother and my nephews.  So if you ever want to get to know her, just ask me.

I could talk about her forever.

zoofamily

Finding the Spirit

A few weeks after my bodybuilding competition, around Halloween, my sister Nicole and my nephews, Matthew age 11 and Sean age 5, came over to hang out.  My sister all of a sudden had a desire to decorate the house like our Mom used to.

My mom was beyond festive.  She decorated the house for every holiday.  It was adorable and sweet and so fun to walk into the house, even around St. Patrick’s Day, and see little shamrocks everywhere and the house decorated in green decorations.  You know how most people just have boxes in their basement labeled “Christmas”?  Yeah, we have ones labeled “Easter” Valentine’s Day” “Memorial Day” “Halloween.”  You get the drift.

So Nicole started bringing up boxes from the basement and in the closets that were labeled “Halloween/Thanksgiving.”

She opens up the first box, reaches in…and sees a little note with my Mom’s handwriting on it.  “Take care of each other, Love Mom” was written on it.

We were just in awe.   It was of course a bit of a shock to see my Mom’s writing on something in a decoration box of all places.  But we assume she must have thought “Well, they’ll have to go through this box at some point” to ensure that we found it.  It was such a last-minute decision to even decorate the house, knowing we couldn’t do it justice like Mom did, that I almost thought it was luck that we even found it.

Nicole took the note home and rightfully so.  None of us thought we would find any more…until…

Fast forward to just after Thanksgiving.

My sister and I decide we are going to try to bake my Mom’s dessert bread.  This bread is very special.  It’s a recipe my Mom found years ago when we were little and she made it for her friends for Christmas and she made it for Easter too.  This was HER bread.  And it tasted amazing!

Nicole and I baked 4 loaves and they turned out just like Mom’s!!! They are a little gummy in the middle but I recall she had that problem too sometimes.  No big deal.  Slap some butter on that and you don’t even notice.  My nephews tasted it too and they agreed: “Just like G used to make.”

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While we waited for the bread to rise, I asked my sister if she and the boys would help me put ornaments on the Christmas tree.  It’s been kind of hard to get in the festive spirit but we put on some Christmas music and started opening up the ornament boxes.

Guess what we found in the first box?  Yes, another note from Mom!!  She actually wrote it in 2011, just a quick little line about “I’ll always be near you.”  Then she wrote underneath that note in 2012.  “I miss all of you.”  At first I thought she just got the years wrong but Nicole and I think she just wanted to write notes even when she wasn’t sick, just in case.

We hung up the ornaments and I went through some other boxes of decorations to see if I could start to put things up around the house.

I immediately started looking for this mailbox she had.  It has a snowman on it and it’s pretty big but small enough that she kept it on our island in the kitchen.  She would put little toys or pieces of candy in there for the boys.  So everytime they came over, she’d say “Check the mailbox!”  She always had two of everything she bought – one for Matthew one for Sean.

Well, I found the mailbox.  And you know of course I thought to myself “There’s gonna be a note in here.”

Of course there was.  🙂

And it was intended for Matthew and Sean.  It was dated January 16th of this year and it says “I’ll always love you.  “G”

I quickly put the mailbox on the island so the boys wouldn’t see and I went back into the family room and said “I found the mailbox, why don’t you guys see what’s inside?”

So they walked over and opened it up expecting to find candy or something from me…Sean can’t read of course but Matthew saw it and started to smile.  I told them “Go show your Mom.”  So they went over to Nicole who didn’t even know I had found the mailbox and they showed it to her.

Poor Sean asked “What does it say??”  None of us, not even Matthew, could get the words out, we were so choked up.  I finally blurted  out “Do you recognize that letter?”  And he said “Yeah it’s a G.”  I said “That’s right, that’s from G.  It says that she’ll always love you.”

And of course my sister just kind of cried and I started to tear up but I didn’t want Sean to think I was sad and it was interesting because his reaction was sort of joyful.  Almost as if he thinks “Well duh of course she misses me.”  My mom’s big concern was that Sean would not remember her and I assured her he would.

He probably mentions her more than any of us at really random times. I think my Mom speaks to him through him.  I wouldn’t doubt it.  He dreams about her a lot too.

Since that night I have found one more note in a wreath box that was dated in 2011 as well.

It was so nice having this little treasure hunt of sorts around this time of year.  It’s obviously the first Christmas without her so it’s been a little difficult. But knowing she left these notes for us to find after she was gone has helped ease the pain.

This Christmas, as my family and I sit down to dinner, we’ll attempt to make it as festive as we can.  It won’t be the same but now we can tuck these notes away and take a look at them when we miss her the most, and see that she’s still here.

Watching, making sure we’re taking care of each other, knowing that she will always love us.

gsnote

5 months to go

Or 159 days to be exact.   I wanted to have a special little “anniversary/countdown/I-can’t-believe-I’m-doing-this” post at the 6 month mark but life got in the way.

So much to update everyone on starting with the most exciting news:  I have booked a photo shoot for early June.  I’m really excited about this opportunity to showcase my progress so far.  I was feeling very unmotivated in March and earlier this month and this really was the goal that I needed to kickstart back into action.  Of course the photos will be posted as soon as it’s done and available. 🙂

Secondly, I joined a BLT Challenge courtesy of Nicole from Curls & Whey Training.

What’s BLT you ask?  Well it stands for Bites, Licks and Tastes.  Those little cheats, as little as they may or may not be, do add up.  For the average person just trying to shed a few pounds, do they make a difference? I would answer that it depends.  For someone like me trying to compete and get ready for a photo shoot? They absolutely matter.  Because in my mind I might say “Just one dark chocolate square won’t hurt.”  But guess what? I don’t have just one. I might have two or three or half a bar.  So what happened to “just one bite?”  Yep, it adds up and makes a difference probably more mentally than physically.

The challenge consists of teams of 3-4 people who pay a small fee that will go towards the prizes for the winning team.  You must record every BLT you have over the course of 2 weeks.  Just two weeks.  If you do have a BLT, you must pay a $1.  What’s just $1?  Well, again, small price you might say.  But after a few bucks, they add up to more $$$ correct?  Hmmm…are you getting the point?

The challenge officially started today and so far I am at 100% compliant with my plan.  Speaking of my plan, I’m trying a new plan out from a difference coach for now.  This particular plan incorporates what’s called Carb Cycling.  Two days of low carbs, 1 day of moderate carbs and one day of high carbs.  Then you start over with your low carbs.   I’ve done it for just a week and feel incredibly better.  I’m not feeling inclined to cheat (nothing to do with the challenge), I feel fuller longer, I’m not staring at the clock wondering when my next meal will be and I feel more alert than before as well.  I’ve also changed my workouts slightly to incorporate less steady state and more HIIT.  I think the combination of both of these is starting work very well.

Speaking of temptations and lack of cheating, one of our members at the studio brought in THESE the other day.

The Devil.
The Devil.

Ummm…Hello there sugary deliciousness, nice to see you again. Peanut Butter Chocolate Chip Cookies.  Home made.  Soft batched. Free.

I somehow managed to have zero of these.  But here’s the best part – I didn’t exactly want them.  Yes, I told one of my male co-workers to eat them so I wouldn’t.  Yes I smelled them.  Yes they were described to me as being AMAZING tasting.  But perhaps it helped that they were brought in to work when I was just a couple hours away from the end of my shift.  Or maybe it helped that I had JUST finished eating Meal #3.  Or maybe it was the carb cycling taking effect.  All I know is that I avoided them and they were not at work the next day to stare at me for 6 hours.

This is what we call a Non-Scale Victory, or NSV.  This was a huge NSV.

Lastly, I’ve been getting some really sweet feedback on this blog as of late and I just want to say thanks to all of you who read my stuff.  I know alot of you read it without commenting and that’s quite alright.  I’m happy to inspire as many people as I can!

Not to close on a negative note but I must share that yesterday morning I was surrounded by cancer.  Three items were on the kitchen table – The Plain Dealer, Experience Life Magazine and a letter addressed to my Mom from the American Cancer Society Relay for Life.

The Plain Dealer headline was about Cancer Clinical Trials and showed the journey of a 58 year old brain cancer patient, EL Magazine has a story about “A Healthier Way to Fight Cancer,” and lastly the piece of mail.

I hadn’t read the article in EP…I skimmed through the PD article…but I did open the letter.  I’m not sure what I was expecting to see or read but nothing could have prepared me to read the words “Dear Cancer Survivor.”

It was like a punch to the gut.  I was literally surrounded by all this literature that was a stark reminder of my Mom’s struggle and passing.

As much as it sucked to read all of this, especially at a time when I wasn’t expecting to read it, I had to look at what the message really was:

That there is hope (trials), there is a more holistic way to prevent it (integrative oncology according to the article you can find here) and there are survivors out there still raising funds for a cure (Relay for Life).

So to end on a positive note – Here’s to hope, health and happiness.

-Michelle

My Personal Creed

This post is going a bit way off subject from the theme of my blog but I’m sure you will all forgive me this one time.

The subject is writing – And yes even though this is a blog, it’s far from what I would consider writing for me.  I used to write on a regular basis.  And by write I mean writing actual words on a piece of paper with a writing utensil, not typing.  In fact it’s one of the jobs I thought I would actually have as an adult when I graduated college.  I wanted to write ads.  Even after my internship at an advertising agency I still had the “itch” to write but I suppose I had a bigger itch to move to Chicago and see what life was like there.  And writing took a backseat.

This past weekend I went on a retreat for people in their 20’s and 30’s who are going through a “Transition.”  It was advertised in my church bulletin a couple months ago and I recall telling my Mom that I really wanted to attend this retreat and she was so happy for me.

Everyone who knew my Mom, knew she always prayed for anyone in need.  When she was first diagnosed with lymphoma in 2009, she received so many cards from friends and family praying for her and sending her well wishes.  Lo and behold, months later she was in remission.  The prayers were answered.  This last time around was no different.  Cards came pouring in.  We kept all of them and I read them to her shortly before she passed at her bedside.

But what was the most amazing thing is that my Mom herself sent cards and prayed quite frequently – Thank You Cards, Birthday Cards, Just a note to say Hi cards…you name it, she sent them.

So this weekend while I was at the retreat, we had alot of quiet reflection time where we wrote answers to questions regarding the subject matter we had just heard.  Then we discussed what we thought.  Well, I didn’t do much writing at all because I did better “talking” my thoughts rather than writing them.

But then on the last day of the retreat, we were asked to write our own Personal Creed.  I sat in my room and just started free thinking…free writing?  Scribbling down some thoughts here and there and before you knew it I had a rough draft.  The rest came pretty easily to me.  So here it is!

My Creed
My Creed

Sorry it’s so small but if you click on it you should be able to see it.

I’m pretty happy with it.  The best part was sharing it with my small group and getting their feedback which was all positive.  The only question I got was: “Is this how you see yourself living your life NOW? Or is it a goal of how you WANT to live your life?” 

Before she even finished the question I answered: “It’s the goal, this is how I want to live.”

I suppose it’s come full circle:  Even though I’m not at my goal yet of being “stage-ready,” I’m constantly working to get there.  As with my faith, although I am not living this Creed at this moment, I feel like I’m getting closer to it.  I would have to say Mom has a lot to do with it.   I definitely felt her presence at the retreat.

Before I end, I must share this random cute story: A co-worker of mine found my Mom’s prayer card from the wake on the seat of her car as she headed into work this morning.  Funny thing is, she has no idea how it got there.  I had given her a thank you card with my Mom’s prayer card INSIDE of it, but she didn’t even see it.  The best part is, she was having a bad day so seeing my Mom’s smiling face on her car seat gave her a little boost to her day.  My mom has that effect on people, even now. 🙂

Happy Easter everyone!

All About Mom

May 22nd, 1948 - March 10th, 2013
May 22nd, 1948 – March 10th, 2013

My Mom was my biggest fan. You can see how she commented on quite a few of my posts and was my photographer for my progress pics. She was very supportive of my endeavors and always found an opportunity to say “I’m so proud of you honey!”

Although I know she probably cringed as I became the Tupperware queen as I would leave some of my empty containers all around the kitchen, she did express to me many times how she loved that I cooked and prepared all my meals. “There’s my cooking daughter, cooking up a storm in there!” she would say.

These last few weeks of my mother’s life were especially difficult. She knew her health was deteriorating and although she said she was trying to remain positive, I think she knew something was terribly wrong. Instead of focusing on the negative feelings and the horrible things that happened, I’m trying to remind myself of all the good things that took place, especially these last three months. I can’t help but smile a little as I reflect on them today:

– I was able to make my Mom some delicious smoothies every morning, some of which she said “This is the BEST one yet!”

– When I would come home from the grocery store with food from my meal plan from my nutrition coach, she actually asked if she could eat some of it too.  It was such a joy to be able to cook for my Mom! The orange roughy I baked was her favorite by far.

– Wednesday night, just two days before she asked for hospice, she looked over at me and said “I’m tasting for something but I don’t know what…maybe some oatmeal. Do you have any oatmeal?”  DO I HAVE OATMEAL?!  I have a membership to Costco and stocked up on the stuff, I HAVE Oatmeal Mom! 🙂  She wanted butter, milk and some sugar in it.  I brought it over to her and apologized for not making it very “mushy” and instead it came out “watery.”  But she gobbled it up anyways.

-Thursday night she asked for oatmeal again.  “This time could you make it less watery?”  I whipped up the butteriest, milkiest, sugariest oatmeal anyone could ask for.  It was the last thing she ate.  I was honored to do it.

-She was able to celebrate Fat Tuesday and have a paczki with my Aunt just a couple weeks ago. She told my aunt it was “The best time I’ve ever had!”

Fat Tuesday with a Paczki!
Fat Tuesday with a Paczki!

-I drove her to my nephews basketball game a few days later which would be the last time she was out of the house.  And what a game! Triple Overtime and they won! 

– The last thing I said to her before she passed was reading to her from her own book, “A Grandma’s Book” that was given to my nephews.  It’s all about her.  I read an excerpt from her “Favorite Things.”  For those that didn’t know her, here are a few of them:

“I love my friends, I love my family, I love them more than life itself.  I love hummingbirds, I love CHOCOLATE.  Especially Lindt Truffles.  I love Tote Bags, I have about 20 of them!  …I love baking bread and giving it to my friends at holidays.  I love the smell of freshly cut grass.  I love when it’s thunderstorming outside and I’m safe and sound in my house.”

I know I’ve said it before but my Mom was simply the best that there ever was.  Her smile was the biggest, her heart was the largest, her love was the greatest.

October 17th 2012 - 42 Years of Marriage
October 17th 2012 – 42 Years of Marriage

I had toyed with the idea of throwing in the towel on this competition.  I even thought about giving up on eating healthy, on working out in general.  But after talking to my sister and a few other folks, it’s pretty obvious Mom would be PISSED if I gave up.  She’d especially feel guilty for being the REASON to give up. 

So I’m back on it today.  I started back on my meal plan a couple of days ago but today is the first full day of getting my habits back in line.  It’s rough…but it’s not nearly as rough as she had it.  I have to remind myself my Mom had quite a tumultuous 6 months.  I try to live each day for her now. I only hope I can be a reflection of what she was like.  I definitely have some big shoes to fill, I’m sure I will never fill them.  But I will try to live each day with that bright smile on my face. 

Love You Mom!

"Light The Night" Fundraiser for LLS
“Light The Night” Fundraiser for LLS