Welcome to my world

I am a wife, a mom, a daughter, a sister and a friend.
I've learned that who you have in your life matters more than what you have.
Thank you for stepping in to my world!

Friday, September 15, 2017

Kicking cancer's ass - day 1477

Do you want to know what's terrifying?

Waking up from a sound sleep for no reason.... then realizing that my heart is racing, my thoughts are scattered, I'm filled with fear.  Nightmare?  I wish that's all it was.

I have *that* feeling.

Every time this has happened to me..... always at night..... this feeling that something bad is going to happen?  It happens.


I'm not just talking about waking up with a cold, or having a bad hair day, or losing my car keys.  When I get this feeling, it's usually a life or death situation.   I don't know who, or what, or where, or even when..... but this feeling always leads to bad news coming my way.

Tomorrow my son is riding 4+ hours on the bus to a football game.
Tomorrow my daughter is riding 4 hours with a friend to the football game.
Tomorrow Hubby and I are driving 3 hours to Dallas, then another hour to the football game.

That's a lot of hours, and miles, for something bad to happen.

I had cancer.  My best friend has cancer.  
My mom had cancer.  One of her best friends has cancer.
My dad has a myriad of health problems stemming from a heart attack and stroke (and yes, I had "that feeling" right before that happened).

That's too many people in my little circle with serious, scary health issues. 

Tomorrow I'm having a chest CT scan.  The purpose is to see if they can discover a reason for my sudden onset of lymphedema.  As a cancer patient, having a feeling of foreboding the night before a CT scan is enough to send me into a panic attack.

It's 1:48am and all I can do is worry about tomorrow.  Will this be the time "that feeling" is wrong?  Or do I just have to wait until bad news hits me like a ton of bricks?

Do me a favor:  be extra careful.  Do it for me.

Tuesday, August 29, 2017

Kicking cancer's ass - day 1460

Four years ago today I had my first chemo infusion.

The red devil.  It made me sick.  It made me weak.  It took my taste buds, my energy and my hair.  It gave me migraines, constant nausea and mouth sores.  

It also killed my cancer.

When I was faced with the start of treatment, I couldn't even begin to envision my life four years down the road.  All I could think about was that I had cancer.  There was something in my body trying to kill me.  I was 40 years old with two young(ish) children..... I wasn't ready to face my own mortality.

I knew chemo would be no walk in the park, and it wasn't.  It sucked.  Big time.  And I didn't even have it that bad.  I was basically a 90 year old bald woman with morning sickness..... that's what I felt like.  Everything hurt, I was too tired to do much of anything, and I only had a handful of things I could eat or drink.  I drank slushes from Sonic during chemo to try to prevent mouth sores.  The Benadryl they gave me in my pre-meds gave me restless legs so I would have to pace the infusion room with my IV pole.  I tried using cold caps to save my hair (God bless Hubby for going along with me on that).... they didn't work.

The only thing worse than being a cancer patient is being a cancer patient and looking like a cancer patient.  I had a wig (that I hated), but no amount of fake hair or makeup can hide the devastation chemo does to your body.  Think about it..... this toxic substance is injected into your bloodstream to kill cancer cells, but there is no way to only target the bad cells.  So your whole body suffers.  Your hair, your skin, your fingernails, your teeth, your eyesight, your appetite....everything is affected, and not in a good way.

Looking back to four years ago, I was smart to dread chemo.  I was right in thinking it would be worse than awful, because it was.  I've had seven surgeries and thirty-three radiation treatments, but none of that even came close to the awfulness of those eight chemo treatments.

I'm not writing this to scare anyone.  If you have cancer, and you need chemo, DO IT.  It's not fun, but you can get through it.  I did.  There are tips and tricks, things you can eat, drink, take or do to make it bearable.  You won't enjoy any part of it, but you'll survive it.... and hopefully your cancer won't.

Today I had an appointment with my surgical oncologist.  Other than my sudden onset of lymphedema, I got the "everything looks good, come back in six months".

After four years of doctor visits, scans, blood draws, surgeries, infusions, radiation and physical therapy, a six month checkup is just a blip on my radar.

I'm beyond grateful for what's in my rearview mirror.... and blessed beyond measure to have my Hubby, my kids, my family, and wonderful friends in my corner.

I can't think of a better way to snub my nose at cancer than to turn a checkup into a fun girls day road trip.  Wonderful company, good tunes, lots of laughs and even chocolate cake..... 1460 days and still kicking ass!

Wednesday, August 23, 2017

Kicking cancer's ass - day 1454

Two months ago I developed lymphedema in my left arm and hand.  It was instant.... one minute I was fine, the next my hand blew up.  The risk was always there.... having more than twenty lymph nodes removed meant my chances of getting it were pretty high.  It could have happened right after surgery, or a month after surgery, or now, four years later.  Or it could have never happened.  If I had a choice I'd pick never.

I've seen a lymphedema specialist who showed me how to wrap my arm for maximum compression, and I've spent almost a thousand dollars (after insurance!) on a pump that is supposed to help move the built up fluid away from my arm and throughout the rest of my body.

It's quite the contraption, and I have to wear it for an hour every night.
So after almost four weeks of Flexitouch treatment....

And an even longer time wrapping my arm before bed every night....

This is what my left arm/hand looks like (and this is with wearing my sleeve and glove all day):

Discouraging to say the least.  Obviously it's getting worse despite the my efforts to contain it.  
What can I do?  I can wear the bandaging 23 hours a day..... which is not only uncomfortable and hot but makes it virtually impossible to do simple things like work on my computer (I'm pecking at the keyboard like Hubby usually does) or even wash dishes.  Or I can look into purchasing a custom sleeve and glove, which will hopefully work better by fitting better.  That will cost hundreds of dollars.

It's depressing that those are my best options for treating a condition I will most likely have the rest of my life.  

I have my six month check up in Dallas Tuesday with Dr L (my breast surgeon) and I hope she has some other ideas that could help.

Lymphedema is more than annoying..... it's ugly and uncomfortable and painful.  And expensive. 

Stupid cancer.

Monday, August 7, 2017

Kicking cancer's ass - day 1438

It's National Lighthouse Day!

It was on this day in 1789, that Congress approved an Act for the establishment and support of lighthouse, beacons, buoys and public piers. In Celebration of the 200th Anniversary of the signing of the Act and the commissioning of the first Federal lighthouse, Congress passed a resolution which designated August 7, 1989 as National Lighthouse Day.

If you know me at all, you know that I have a deep love for lighthouses.  It began a long, long time ago when my family would vacation in Maine every summer.  We would stay at the same beach house and I'd sleep in the same bed, putting my pillow at the other end of the bed so I could see the lighthouse blinking in the distance.  That was the Wood Island light.

Even though I've never lived on the coast, I've been fortunate to visit many beautiful lighthouses.  Watch Hill Light (RI), Cape May (NJ), Fenwick Island (MD), Cape Henry (VA), Sullivan's Island (SC), Morris Island (SC), Hunting Island (SC), Harbour Town (SC), Tybee Island (GA), St Augustine (FL), and Jupiter Inlet (FL) and some others I've probably forgotten.

One of the most amazing places I've ever been is the Outer Banks in North Carolina.  The sand, the sea, the small towns, and the lighthouses!!  Currituck Beach, Bodie Island, Cape Hatteras, Okracoke, and Cape Lookout are some of the most majestic and scenic lighthouses you'll find.  I could retire a very happy woman if I could wake up every day to a view of any of those.

Even my small hometown of Saugerties, NY in the Hudson Valley has a lighthouse, and you can even stay there (it's a B&B)! 

I know that technology has diminished the usefulness of lighthouses for navigation purposes, but these beacons are a beautiful and unforgettable part of history.  

Sunday, August 6, 2017

Kicking cancer's ass - day 1437

August is a strange month for me.  If you've read any part of my blog over the last four years, you know that August 1st was d-day for me.  That right there should put this month in the crapper for the rest of my life.  Three years ago my dad was fighting for his life after a heart attack and massive stroke.  Seven years ago my sweet mother-in-law was days away from taking her last breath.

You'd think when I flip my calendar to August, I'd make sure I had an adult beverage in my hand.  But.... whenever I need inspiration for something to write about, I go back and read my blog posts from this day in years past.  And tonight, reading the post from 8/6/14 hit me almost like a blow, but not in a bad way.  More like in a reality check way.

Three years ago I wrote:

Last night I went to bed in tears, afraid I was seeing the last of my dad. Tonight I am going to bed with a thankful heart... for God giving my dad some peace and rest, for the nurses who are taking amazing care of him, for Marion who is most definitely standing by her man, for my mom and my brother who are with me as we watch over my dad and hope for the best, for my BFF who I saw today for the first time in a year, and for my Hubby who is giving me whatever I need.
Blessed, even in troubled times.

Blessed, even in troubled times.  When did I get so wise?  Even when life f**ks you over, God is always good.  
Most of my life I have been accused of being a dreamer and living with my head in the clouds (or in a book, take your pick).  After all of the things I've been through in my adult life, I call it something else:  finding the silver lining no matter how bleak things look.

August of 2010 was incredibly sad.  August of 2013 was the absolute worst time of my life.  August 2014 was the scariest time of my life.  But you know what?  There's always a silver lining.  

August 1, 2015 was a lovely, wonderful, romantic day.  My mom and her longtime love were married in a simple outdoor ceremony at one of her favorite places.  She and her hubby celebrate birthdays in August.  My BFF's birthday is August 10th.  My big brother's birthday is August 23.  BFF's daughter's birthday is August 28th.  My beautiful amazing daughter was conceived in August.  I have plenty of reasons to make this a month worth celebrating.

Before I know it, summer will turn to fall and life will go crazy.  Between work and school, band and football games and the ever-present softball, we rarely have a free minute.  So for now, I'm going to enjoy these last two weeks of summer vacation with my kids.  I'm going to soak up some sunshine, sleep late when I can, and try to talk my daughter out of making yet another container of slime.

Dog days of summer..... let's make the most of them.

Tuesday, August 1, 2017

Kicking cancer's ass - day 1432

Four years ago today.... d day.

I was at Family Life Center at First Baptist Church and my kids were roller skating.  When my phone rang and I saw my doctor's number, I knew.  She tried to go easy on me, asking if I wanted to come in to meet with her. I remember telling her "just say it".  Her response was, "It's not good."

I wasn't surprised.  I knew the instant I found the lump weeks earlier that it was going to be cancer.  There was no doubt in my mind.  I was on vacation with my kids, and then meeting Hubby in Kentucky for a softball tournament before heading home, so I had to pretend for several weeks.  Pretend that life was good, that I was fine, that I didn't have something unwanted growing inside me.  So getting the call that confirmed my fears wasn't a shock, but I don't think anyone is ever prepared to hear

you have cancer

Life as we knew it was forever changed.  My world would soon revolve around doctor visits, medications and test after test.  We learned through ultrasound that there were actually two tumors, and MRI showed cancer in my lymph nodes.  This was not going to be a walk in the park.  My genetic testing came back positive, so my doctors went into full battle mode.... we had to treat this aggressively.

Sixteen weeks of some of the harshest chemo out there....six weeks of radiation....seven surgeries in two years.... and now at least ten years of hormone therapy to keep cancer away.

I don't regret anything I've done in my battle with cancer.  I knew I would want to look back and know that I did everything I possibly could to make it go away and stay away.    It was no picnic, and even now four years later I am still feeling the effects of chemo and surgeries.  
But I showed cancer who was boss.

Thanks to the support of my amazing Hubby, I always get back up.

Happy 4th Cancer-versary to me!

Wednesday, July 12, 2017

Kicking cancer's ass - day 1412

Vacation.... I'm using that term loosely tonight.  
What started out as a trip full of fun visits with friends & family, water parks, roller coasters and Jolly Cow ice cream has turned into a jumble of mishaps and medical issues.  

Before I get to the crap, let's share the good news.  My dad's lady friend is doing much better.  She came home from the hospital Monday night after getting good results on her CT scan and MRI.  She had a mini stroke (officially known as a Transient ischemic attack), but there shouldn't be any lasting negative effects.  She has to take it easy (instead of trying to be super woman.... a role she's been playing for three years) and get some help so she isn't doing 100% of everything.  My dad will not like that.... he acts like a temperamental toddler whenever anyone other than family comes over to help.  But he will just have to deal.

So after spending three days at their house on full time nursing duty spending time with my dad, cooking his meals, giving him his meds (he takes a LOT of pills!), checking his vitals, helping him up and down the stairs, getting him washed up and dressed, and dozing in the chair while he watched 12 hours of CNN, I came back to Mom's and woke up yesterday morning to this:

It started across my chest, and has since spread on my torso, down my left side and towards my back. 


I have not changed any of my bath or beauty products.  I have not been in a contaminated swimming pool or lake.  I am not wearing any new clothes.  The only thing new is my lymphedema, and I have to admit I'm a little freaked out because Dr. Google (and some of my breast cancer friends in the know) told me that cellulitis often goes hand in hand with lymphedema.  And is it an awful coincidence that the rash is mostly in the areas on my body where my lymphatic system is compromised?!?

I spent the afternoon at urgent care getting checked out.  The doctor said an infection like cellulitis doesn't usually present like this, that it looks more like a sensitivity or allergic reaction to something.  What that something is, we don't know.  The funny thing is, it doesn't itch.  It doesn't hurt.  Taking Benadryl doesn't help it, and cortisone cream doesn't either.  So what in the world is wrong with me?

Not only am I unnerved about having a mystery rash (no cancer patient wants a mystery anything when it comes to their health), but today I had to undress for a doctor unrelated to my cancer.  You would think after having two children, being examined by countless doctors over the last four years, having seven surgeries and undressing for 33 radiation treatments, it would be old hat.  It's not.  Even though I have admirable results from reconstruction, it's an illusion.  I'm scarred and have obviously reconstructed breasts.... my body is living proof of the wear and tear cancer and its treatment has on a person.  I've been seeing all of my cancer doctors for so long that I'm (sort of) comfortable with them, but someone new, not a cancer specialist, taking a look at my chest almost sent me into a panic attack.

Good thing they took my blood pressure before!

I have no idea what tomorrow will bring.  I started my first dose of prescribed steroids today, so maybe, just maybe, I will wake up and see some improvement.  If it continues to get worse, or other symptoms develop, then I have to be seen again.  I don't know what this rash is or what caused it, but I want it gone.

In the meantime, I will continue to enjoy spending time with my kids in my hometown, eating too much ice cream and finding fun things to do with my family.  We will be heading home next week, so I'm going to try and put away the worry and add the relaxation and joy back into my vacation.

Stupid cancer.

Saturday, July 8, 2017

Kicking cancer's ass - day 1408

I'm sad today.

I'm sad because it's my hubby's birthday and I am not with him.  He's a guy who deserves to be celebrated. 

I'm sad because my (for all intents and purposes) stepmom was taken by ambulance this morning.  She wasn't feeling quite right, and it's a good thing she went.  Doctor said she had a mini stroke and they are keeping her overnight.

I'm sad that life keeps getting more and more difficult for these two wonderful people.  My dad has always been the kindest, most patient, humble man.  Even though he was in his 70s, he worked full time - often overtime, he bowled, he played golf, he loved to fish.  A heart attack and stroke brought him down to walking with a walker and watching law and order reruns.  We see more and more of my old dad in him as time passes.... he's more pleasant, his memory is sharp, and his medical issues are stabilizing.  But he'll never have even close to the quality of life that he used to.

I'm sad that his lady friend is dealing with this.  I hate to use the term martyr, but she has dedicated her life the last three years to taking care of my dad.  It hasn't been easy.  He has been angry and hateful towards her, he requires constant care (his medication case scares me!), and she takes care of everything around the house from laundry to yard work to shoveling snow.  She is 70. She has been a Godsend for my dad and I don't know what he'd have done without her.  I don't know what effect this latest event will have on them.  How can she take care of him if she needs care herself?  And what can I do from 2000 miles away?  It's fortunate that this happened while I'm here to help,  but that's only temporary.

I'm sad that my BFF has stage IV cancer.  She's my partner in crime, the friend who has known me longer and better than anyone else.  The fact that she's facing the beast yet again, with an uncertain future,  scares the crap out of me and pisses me off.

I'm sad that another friend is miserable and in pain and can't find any answers.

I'm sad that the three year "anniversary" of Allyson's passing is almost upon us.  I miss her guidance, her wit, her wisdom and her caring.

I'm sad that the lymphedema in my arm is not getting any better.  Its frustrating and annoying to wrap it every night and wear compression all day and it's STILL puffy. I'm sad that cancer gave me this surprise gift 3.5 years later. 

Life is never easy.  It's a blessing, but not always a smooth journey.
And tonight I'm just sad.

Thursday, June 22, 2017

Kicking cancer's ass - day 1392

Do you know what lymphedema is?
Before cancer invaded my world, I had no clue.

Let me educate you.

Lymphedema is swelling in an arm or leg caused by a lymphatic system blockage.
The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.

The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort.

Since I had tons of lymph nodes removed during my initial surgery, my lymphatic system on that side is compromised.  With no lymph nodes, the lymph fluid has nowhere to go, and it can build up.

I've tried to be diligent about preventing it to the best of my ability.  I wear my compression sleeve when exercising or out in the heat, on an airplane or if I feel the tiniest bit of swelling.  I make sure to always get my blood pressure taken on my right arm, and avoid needles (shots or iv) on the left side.  In three and a half years I haven't really had any issues.

Cancer really is the gift that keeps on giving.  Aside from the fear that every ache and pain, cough or rash could be cancer, there is also the possibility of a surprise lymphedema diagnosis years later!
I saw a lymphedema specialist Monday and she taped my arm until the wrapping supplies came in.  Well...... they came in and I saw her again today.  Lucky me.

I have five, count them, FIVE layers of stocking, padding and bandages on my arm.  And I get to do this every night for the foreseeable future.  BLAH.  I'm lucky that my therapist took pity on me.  Normally a patient would wear this 23 hours a day.  Since my lymphedema isn't extreme and is mostly localized in my forearm and hand, I can get away with wrapping at night and wearing my sleeve during the day.

It's a very good thing that I've never broken a bone.  I would NOT be a good patient if I had to wear a cast.  My son had to unclasp my necklace tonight because my arm wouldn't bend far enough to reach it.  I had to stretch a rubber glove over my hand to cook dinner.  I have an ITCH in the crook of my elbow.... that I can't get to!  Oh, and I live in Texas and it's SUMMER.

We are leaving tomorrow for a road trip including a softball tournament, visits to two different friends in two different states, and ending up in New York to see my parents.  I will be traveling with my little bag of wrapping supplies and hope between me and my son we can figure out how to duplicate this crazy contraption on my arm.... every night.

I know there are much worse things I could be dealing with.  It's uncomfortable and restrictive and annoying..... but not life threatening.  I'm not sick, I'm just swollen and achy and pissed off that this happened.  

Just goes to show you you're never really "in the clear" from anything cancer-related.

I guess I get to add another color awareness ribbon to my profile.  I should go jewelry shopping.  😄

Wednesday, June 14, 2017

Kicking cancer's ass - day 1384

Cancer really is the gift that keeps on giving.

One of the complications that can arise from cancer treatment and surgeries is lymphedema.  I had over 25 lymph nodes removed during my mastectomy (that's a lot)..... basically all of the lymph nodes under my arm are gone.  That means my lymphatic system on that side is compromised, and the lymph fluid that keeps everything flushed out can build up.

I've been lucky.... in the three and a half years since that surgery, I've only had some minor incidents of swelling in my left arm.

My luck ran out.

Apparently working long hours in 100 degree heat for three days straight at the softball fields was too much for my poor compromised left arm to handle.  Even though I wore my sleeve, my forearm, wrist and hand have been swollen worse than ever.  I had to take my wedding rings off because they were cutting off the circulation on my finger.  Being unable to wear my rings makes me sad (just ask Hubby.... I almost cried when I had to take them off for surgery).

I now have elephant man hand.

Maybe I'm being a little dramatic, because looking at that picture, it's obvious but not horrible, right?  However, once you have small signs of lymphedema, you can easily fall down the slippery slope into more extreme cases.

"Hand lymphedema is more difficult to control than arm lymphedema. The hand’s irregular shape, its critical role in daily activities and the difficulty inherent in precisely fitting a gauntlet/glove all contribute to this problem. It is vital that early signs of hand lymphedema be taken seriously and that appropriate modifications are made to a patient’s lymphedema maintenance program."

I have an appointment on Monday with a lymphedema specialist and I hope he/she can help.  I was treated by a wonderful occupational therapist right after my surgeries, but she's in Dallas.  Since therapy often involves multiple sessions, I really needed someone local.  Fingers crossed.

Thursday, June 8, 2017

Kicking cancer's ass - day 1378

Sometimes I struggle.

I struggle with the physical changes cancer has given me.  I'm tired.  I hurt.  I don't look the same, I don't feel the same.  I take medicine to keep cancer away, but I hate the way it makes me feel.
-I need to remember that God created me to be me.  Michelle IS much more than just a name.

I struggle with feeling inadequate.  I've never been one of the "popular kids".  I'm a loner, a bookworm who shies away from attention.  People don't gravitate towards me.  I often feel like I want more from people than they want to give, and I feel like I want friendship with people more than they want it from me.
-I need to remember that there's nothing wrong with giving someone the best of me, even if they don't appreciate it.

I struggle with letting life overwhelm me.  Sometimes I feel like it's all I can do to keep my head above water, and I feel like the ones I love the most are the ones who suffer.  It feels like a lame excuse when I say I can't, or I'm tired, or I forget something important, when in reality it's just me trying to keep everyone happy while doing everything I'm supposed to be doing.
-I need to remember that I deserve special treatment, even from myself.

Sometimes I struggle with who I have become.  Surviving cancer is exhausting.  I'm grouchy and forgetful and short-tempered and easily annoyed.  I'm impatient, scatterbrained and lazy.  Sometimes it seems like the fun, giving, organized, capable Michelle is a thing of the past.  Sometimes even I don't like me.... so how can I expect others to?  
-I need to remember to give myself a break.  While one thousand three hundred seventy-eight days is a long time, in the grand scheme of fighting cancer, it's not.  I'm a toddler in terms of cancer survivorship, so I can forgive myself for not having it all figured out.

I don't put a whole lot of stock in horoscopes or zodiac signs..... but I like this.  I don't always believe all of it, but I want to look in the mirror and see all of these traits staring back at me.  

I know this post is different from what I usually write about.  I'm not here today to discuss a medical procedure, or post pictures of pink ribbons and talk about how every day is a gift.  Today I need to keep it real.....I love every day because every day since August 1, 2013 is a bonus day for me.  But just because I love every day doesn't mean every day is a good day.  

I need to remember that it's ok to have a pity party every now and then.  It's ok to have a bad day, to not want to do something, to forget to call someone back.  It's not the end of the world if I can't be all that I used to be.... or even all that I want to be.  All I can do is give my best, take care of myself, treat others how I'd like to be treated and live each day the best I can.  

Wednesday, June 7, 2017

Kicking cancer's ass - day 1377

If you have never watched college softball, you are missing out.  Hubby and I were fortunate enough to take K and her friend N to the NCAA Womens College World Series this year.  We spent five days in Oklahoma City in softball heaven.

We had tickets to every game (all ten sessions!), sat through unbearable heat, a downpour and some absolutely perfect softball weather.  We met some really fun fans, were able to see some of the Baylor players (the girls got autographs), and we experienced the longest championship game ever (17 innings!!!).

Every year we have watched this tournament on television and swear we are going to go next year.  I am so glad we finally did.  The facility, the fans, the atmosphere, the talent.....it's something special.

Pure coincidence was seeing some old friends who were in OKC playing softball!  E will always have a special place in my heart as one of the first Lady Diamonds (and a sweet, sweet friend to K).  If we could have ten #7s and ten families just like hers, we would have the perfect softball team.  
We were so happy to see them and were able to watch one of her games.

One of the special things they do every year at the WCWS is honor cancer survivors with a "Strike Out Cancer" night.  We discovered this when we received these rally towels as we walked in Monday night:

What I didn't know was that during the game, cancer survivors in attendance receive a t-shirt courtesy of the American Cancer Society and they are invited to go out on the field in between innings.  Standing in the outfield in the middle of so many fellow warriors, hearing the applause of 8,000 people and waving up at my family was like receiving the biggest hug possible.  I was surrounded by people who've never heard my name and don't know my story, but they celebrated the fact that I'm a survivor.