Living in the Moment

You know that saying:  "When God closes a door, He opens a window"?  Well, I have definitely experienced that recently.  It's funny how when you resign yourself to accepting a situation and make peace with it, sometimes life throws you a curveball...That is the way this journey has been for me all along.  Each time I have been faced with this disease taking me in a direction, something unexpected happens or our direction suddenly takes an unexpected turn.  This sometimes makes it hard to determine what to do next, or how to plan events in my daily life. It's kind of hard to explain, unless you have lived through something like this.

People my age are talking about becoming "empty nesters", when their youngest child goes off to college, or gets married.  Or planning for retirement with their spouse.  Or how/where they will celebrate an upcoming holiday or a family vacation for next summer.  When you are faced with a life-threatening illness, your perspective of these events changes drastically...sometimes you can't even plan for what you will do tomorrow, let alone next summer or five to ten years from now!   (The question on everyone's mind, especially your own, is:  "Will I Be Here?")

I am here to tell you that even though those questions are like "the elephant in the room", you just can't let yourself go there.  Let's face it, people; "self pity isn't pretty"!  Yes, it's human nature to wonder about these things.   But, it takes far more energy to worry about the outcome of things you cannot change, than to make the most of the time you have with the people you love.  Whenever I feel like I am "slipping" into what I refer to as "worry mode", I remind myself that I have already outlived the prognosis for my illness.  To me, that means that I have a purpose for still being here.  That God isn't finished with me yet and I have more to do here on this Earth!

Someone very wise told me to "always live your life to the fullest, because tomorrow is not guaranteed to us".  When you are sick, you tend to spend an exorbitant amount of time contemplating your life; not just the memories, but what you still want or hope to do.   How many times have you told yourself "I'll do that later, when I have more time/am not so busy/retire, etc."?  I know I am guilty of this and realized one day, that there is no time like the present to do some of the things I have put off for one reason or another.  Not because I feel like I won't get to do them, but because we shouldn't make those excuses.  

I admit, I am a list maker, and always have been.   It helps to keep me organized and it feels good to me to cross things off my to do list as I finish each task. Now, I am talking about day-to-day activities, NOT a "bucket list".   But, suddenly, I felt like I should put down the to do list and stop pressuring myself to get things done unless they truly had meaning to me.  (Of course, I still do things like laundry, cooking, etc.)  But, I started by making a list of things I enjoy doing and haven't done as much as I'd like...painting, gardening, cross-stitching, reading, sewing, cooking, etc.  

And, believe it or not, I have actually begun doing them!  I cross-stitched three pictures for my baby granddaughter's room, and helped paint a mural on her wall before she was born.  Made a list of all the books I wanted to read, and have become a "regular" at our public library and also, the nearby bookstore. Have gone to the movies, spent more quality time with my kids/grandkids and gone on more "date nights" with my husband.  I've started working in the garden again, now that the Texas weather has gotten cooler. And, have started a new "trend" at my house...painting!  In  fact, you will probably laugh when I tell you that I spent about two hours (locked in my bathroom, to avoid interruptions) painting and the result was better than I thought it would be...No, I didn't paint the walls (which I have been known to do on a whim, and my husband can attest to the "surprising" results), but I painted an actual picture on canvas!  I call it my "Tree of Life".  (See it below)  My daughters, grandson, and even one of my nieces have enjoyed spending time painting recently, as well.

It's NEVER too late to enjoy your favorite hobbies, or whatever it is that you like to do! Take it from me, it's much better than leaving those things on the "back burner" or putting them off entirely.  Get out there and enjoy your life!    Be present and live each moment to the fullest!  You'll be surprised at how much better it makes you feel! - Barb

Who's In The Driver's Seat? (You Can't Control Everything!)

We never really know what life has in store for us or what Blessings will come our way.  No one can predict what will happen tomorrow, or next week, or in an hour, etc.  But, we humans always feel like we have to be "IN THE DRIVER'S SEAT" and/or IN CONTROL of our environment, and everything in it; which is obviously NOT possible...I have always been one of those people that has trouble "relinquishing" control! 

I  attribute this trait to my Mom (SUPERWOMAN), who was also a two time cancer survivor.  She was what I fondly refer to as a "June Cleaver" (if you are too young to remember the show "Leave It To Beaver", then, this will be lost on you).  She was always dressed in either a dress or skirt (I don't think she wore a pair of pants until she was in her 70's, and she never even owned a pair of jeans), always wore makeup, and had her hair styled just right, no matter what she was doing. She was the kind of Mom that could do Everything from whipping up a gourmet meal at a moments notice (when my Dad called to say he was bringing home a business associate for dinner, unexpectedly) to the Mom who lovingly handmade our Halloween costumes (often decorating them with paint, or other embellishments, which took hours). The kind of Mom whose house barely looked lived in; even though she had four kids with busy schedules, a husband who traveled frequently for business, and she also worked a full-time job!

She made dinner Every Night (no "fast food" in those days); planted flowers and vegetables in our garden; made sure we did our homework/school projects (she didn't do them For us); starched and ironed my dad's button-down shirts (AND our cotton sheets, tablecloths, clothes, etc.); drove us to all our activities; cleaned our house; ran errands; loved to paint and do ceramics (when she  found time in her busy schedule/I am guessing when we were asleep); took swimming lessons one night a week, so she wouldn't drown if she took us to the local swimming pool in the summer; and Always managed to make Everything she did look Easy!  I only wish I were half as good at some of these things as she was; and I hope she knew how Amazing I think she was!

I realized something the other day, though...when my Mom was sick, her parents, two sisters, and even a cousin (who was a nurse) rallied around us and "took over" doing all my mom's usual duties, as my Dad still had to go to work.  I was a little girl at the time, and I still remember how important having that help from them was to my mom's healing.  I understand so much more about her journey with this disease, now, after being on this journey of my own.

My chemo treatments also made it difficult for me to do regular everyday activities, sometimes, too...cooking, cleaning my house, caring for my family, grocery shopping, and just about everything else I am used to doing.  It is hard to feel like you can't keep up with your usual schedule and/or do things for your family that they regularly count on you to do...

Cooking was one of the most difficult things for me during my treatments.
You lose your sense of taste, lose your appetite, and often feel too sick to even think about food, let alone cook it.  Then, there is what I  fondly refer to as "Chemo Brain" which is a phenomenon where you have issues with thinking clearly..."Did this recipe call for Sugar or Salt?" Or,"Did I put this ingredient in yet, or not?" Let's just say that it makes for some rather interesting meals and new taste sensations!  LOL!  However, I was also Blessed with family and friends who set up a care calendar to make meals for us, when I was receiving my chemo treatments.  Thank you, from the bottom of my heart, for this loving gesture that so many of you made!  

There is a service called "Cleaning for a Reason" that offers FREE housecleaning for chemotherapy patients, which I have been told is very helpful.  So, if you are in need of this service, I know they have a website where you can sign up.  I have not personally used this service, but have received other help with getting my house cleaned during my treatments...Am I the only "Crazy" person that runs around her house "tidying up" before someone comes to help clean it?  I know it sounds nuts, but I was afraid they would "back out" and not want to clean, if they saw the condition of my home prior to my "tidying up"...LOL!

At first, I didn't know what to do with myself, since other people were doing some of my usual chores for me.  It felt surreal to not be responsible for all the tasks I was used to doing.  Then, I realized that I should be grateful for the opportunity to use that time to rest, relax, and heal...that sometimes you need to "sit still" (often a foreign concept for me) and not worry about whether everything gets done or not.

Through this experience, I have learned:
- that sometimes THINGS ARE BEYOND YOUR CONTROL.
- that you have to know when to LET OTHERS HELP YOU; and be Thankful 
   for their Love and Support!
- that I DON'T have to be SUPERWOMAN!
- that I DON'T have to do EVERYTHING myself!
- that my house doesn't have to look like a MUSEUM.
- that I AM NOT PERFECT, and my family is happy with me 
  JUST THE WAY I AM!

You don't have to always be in the Driver's Seat...sometimes it's nice to just sit still and be the Passenger.  You never know what you'll see, if you take the time to slow down and maybe look out the window for awhile! - Barb

PICK A CARD...ANY CARD...

(Let me preface today’s blog post by telling you it isn’t my usual style.  In today's blog, I am Not poking fun at some of the very serious experiences I have had during my cancer journey.  I thought it was important for people to know that what I have gone through and am going through is difficult at best and I truly sympathize with anyone and everyone who has gone through or is currently going through a similar journey.)

Someone said to me recently, “How do you do it?”  Meaning, how do I live each day with cancer and not let it get me down.  The truth is, it Does get me down sometimes.  But, I try to give every new day, every person in my life, and every situation that I deal with, my “all” (100%).   Even when I feel the worst,  I try to keep pushing through it and do the best I can to BE in the moment.  Don’t let my sense of humor in some of my previous blogs fool you.  There are days when I can hardly get out of bed due to fatigue and yes, even pain.  During chemo, there were times when I wanted to scream and/or cry; times when I crawled to and from the bathroom (because I was too sick or too weak to stand on my own two feet);  and times when I questioned how long I could keep on going through this day after day…

Do I wish sometimes that I didn’t have to deal with this disease?  Absolutely!  EVERYDAY!  Let’s face it, I got a raw deal with the “cards I’ve been dealt”!  At some point, no matter who you are and what cards life has “dealt” you, only YOU can decide which “card” to pick in this game we call life…

1)  You can pick the pity card – “Why did this happen to me?”

2)  You can pick the angry card – “I hate this disease, chemo, 
       the side effects, everything…” and let the anger consume
       your entire being.

3)  You can pick the defeat card – “I give up; I can’t take this anymore!”
       (and Quit altogether)

                                                                     OR

4)  You can pick the survival card – “I am going to do whatever it takes
       to survive this!”

      (So, you pick yourself up, dust yourself off, and start all over again!!!)

You may think that I Don’t understand what you are going through (if you are fighting cancer) or in any other horrible situation.  But, trust me, when I say, I Do understand how hard things can get sometimes; how angry bad situations can make you feel;  how painful this disease and its treatments can be; and how much you can want to just give up, sometimes!

But, then I look into the faces of my family and I know I can do anything!  If anything happened to one of them, I would summon “superhuman” strength to protect them or do whatever it took to make what was happening to them better.   Like everyone else, I have been faced with situations I wish I had never had to deal with, but I have learned that you can weather just about any storm if you have Faith, hope for a better outcome, and are willing to do what it takes to survive. 

We all have a survival instinct and our own unique coping mechanisms.  My instinct is to Fight!  My coping mechanism is a Sense of Humor.  And, if we are lucky, we have the support of family, and friends, to help us get through the tough times.  I have been blessed to have the love and support of family and friends who have rallied around me in times of need.  If you don’t have family and friends to support you, there are numerous support groups, charities, places of worship, patient advocates, health insurance providers, cancer ministries, and all kinds of groups willing to help those in need.  All you have to do is look for them, and not be afraid to ask for help! 

First, and foremost, remember that YOU are in control of how you fight this disease and YOU make the final decisions on what treatments YOU are willing to try.  YOU have to be your own advocate by researching treatments, getting second or third opinions, and determining which health care providers to use for your treatment.  My oncologist always reminds me that he is there to give me the information and I choose where we go with it...I am in the Driver's Seat!

This disease can make you feel out of control, lost, lonely, isolated, and sometimes like you don’t know where to turn.  On those days, I choose to pick the survival card by asking someone for help (which if you know me, personally, you realize is one of the hardest things for me to do).  I want to be “in control” all the time; but in reality, I am not the ONE who “deals the cards”.

If I can be of help to you on your own cancer journey, please leave me a comment. I will try to help you find the answers.  Thanks for checking out my blog!  I hope you find the information here helpful and maybe find some inspiration from my experiences.  And, sometimes, I hope I can even make you laugh!  - Barb

I Put On My Makeup For This? Life Is Full Of Surprises!

My "journey" with this disease will have its 5 year anniversary later this month. (NOT exactly a cause for celebration!) Sometimes, I can hardly believe I've been in this fight for so long. Then, there are times where I feel like it just started yesterday. Last weekend, I listened to a speaker discussing the book she had written about her personal cancer journey and it reminded me of some of my own experiences...

Prior to starting with chemotherapy, I had a "port" surgically implanted in my chest wall. Compared to most of the things I have had to endure, that procedure was a "piece of cake"!  Of course, I was nervous on my first day of chemo; but my doctor, the lab technicians, and nurses at the oncology center are some of the most wonderful, caring people I have ever met!  They really helped to put me at ease, and made an uncomfortable situation not so scary, by explaining everything to me, as we went along. Several of the medications were administered to me through my chemo port while I was there. Then, I was "connected" to a "portable" pump which I was to "wear" home for approximately 48 hours.  When the alarm on the pump sounded, I had to return to the center to have it disconnected. Sounds fairly easy, right?

I can tell you that it is hard to sleep with a port that feels like a "Lego" block inside your chest, especially, if you are(or "were") a stomach sleeper!  As if that wasn't enough, the pump makes a "whooshing" sound about every 2 minutes.  Every time I tried to doze off, a loud Whoosh" woke me back up.  During the first night, my poor husband "slept" (I use the term "slept" loosely!) with his pillow wrapped around his ears!  Needless to say, it was over 48 hrs. before I was able to sleep, again.  Let me tell you that not much happens at my house in the middle of the night, so this was really boring, especially on the second night...I thought that pump alarm would NEVER ring soon enough!

Most of us have a morning ritual...Alarm goes off, you get out of bed, make the coffee, shower, get dressed, and so on.  It's a little more difficult when you are "connected" to a chemo pump that is NOT supposed to get wet!  The tubes from the pump are taped against your body and you can coil them around the pump unit which has its own little zippered "fanny pack".  To shower, you must cover the part attached to your port with plastic wrap taped to your skin or Press 'n' Seal (which I have found works wonders).  Under normal circumstances you just keep the fanny pack strapped over one arm. But, in order to take a shower, you virtually have to be a contortionist!  I had to uncoil the tubing and find a way to hang some of it over the shower door, without it being pulled ("OUCH") out of the tape.  Let's just say that I am Not Now, Nor Have I EVER Been a member of a Cirque d Soleil troupe and therefore, this stunt was almost impossible!

Another "fun" experience is waking up with hairs (yes, the ones that used to be on your head) stuck to your mouth.  When your hair starts falling out, the simplest things like sleeping on your pillow, can become really annoying; and sometimes comical. It's not bad at first, just a few clumps here and a few clumps there.  But, suddenly, you realize that you might as well wear a Hat to bed or just go ahead and shave your head!  Sadly, this phenomenon is not just isolated to the hair on your head.  Do you have any idea how quickly you can shower when you don't have to wash/condition your previously shoulder length hair and never have to shave your legs? Yes, I can say with all honesty, that I am the current record holder for the Fastest Shower in Texas, at 1.5 mins. to be exact!  (Just Kidding!)

Looking at my reflection in the mirror before my morning coffee was reminiscent of a scene from a horror movie!  You know how in those movies, the person wipes the steam off the mirror expecting to see their own reflection looking back at them? Okay, so there wasn't a slasher standing behind me, but the image in the mirror was definitely frightening!  The techniques I learned in my high school and college art classes DEFINITELY came in handy most days. After awhile, I got good at the "smoke and mirrors", as I call it, of putting on my face and "hair" (wig), to look as "normal" as possible.

I have had thinning eyebrows (first from overplucking as a teenager), and then, after some past radiation treatments...But the day you wake up and your eyebrows are on your pillow and no longer attached to your face, is a really freaky day!  Brow pencils and art training to the rescue, and viola, something resembling my "normal" reflection! Then, it happened...it began like any other morning, the usual hair and makeup routine, except when I went to put my mascara on and "curl" my lashes, there WERE NO LASHES THERE!  All I could think was "I Put On Makeup For This?" When there ARE NO LASHES, no matter how much eyeshadow or brow pencil you apply, something just doesn't look right!

Recently, I was told there would be no more chemotherapy treatments, as the chemo drugs were no longer working.  That was a scary day, but we have looked into some new possibilities for treatment, so things are status quo right now.  However, I can tell you, that no chemo drugs means the long awaited return of hair on my prevously bald head! And, with the return of my hair, I can once again use mascara on my thin, short, eyelashes.  My eyebrow pencils are now used for "filling in" a few bare spaces.  Which brings me to the day I ran around the house recently looking for a disposable razor to shave my legs! (I actually ventured into my daughter's bathroom. Okay, let's not go there!) Just kidding, honey! Remember, Mom loves you!

Soon, very soon, I hope to have enough hair on my head to actually brush through, and dry with a hair dryer...and, eventually, graduate to using the hair straightener that has been gathering dust for several years in the cabinet under my bathroom sink!  Life is full of surprises!  You never know what's going to happen next, or where life is going to take you...but, each and everyday, I am thankful that "I Put On My Makeup" for whatever comes my way! - Barb