Tick tock, Goodnight

Pink Ink….

 

Tick Tock…

It’s 2am, and I can’t sleep.  My mind is racing, thoughts all over the place.  “What do I have to do this week?” “It was great to hear from everybody this past week!”   “Where is Lil B going to camp?” “What the hell did my nurse say again?”  “I LOVE iMovie!” “I clearly can’t go a month without blogging again!”  “Why can’t I sleep?”  “My fingers hurt!” “When is SpaDay?” 

So I’m typing (with 3 fingers!) hoping this will release some energy and I can go to sleep. Let’s see how this goes?

THIS IS LIFE IN THE CANCER LANE.

My mind is racing because my life is a rollercoaster! A roller coaster that goes fast, then slow, forward then backwards, then jerks from side to side!  You know, the rollercoaster that makes you really sick!  My rollercoaster takes me to a great weekend in Philly, and then 4 days later plunges backward with the news that my chemo regimen is no longer as effective as it needs to be.   Then, fast-forward again for a GoRed luncheon, a black tie dinner, and graduation parties.  All, good times!  Then, dead halt at 5am on Mother’s Day when I can’t stop crying with the thought that this could be my last Mother’s Day.

THIS IS LIFE IN THE CANCER LANE.

Just like on a roller coaster, I am kind of used to the twists and turns of Life in The Cancer Lane.  But it never fails to throw me, when the ride goes backwards.  I was just getting used to not being able to plan my life more than a couple weeks, hell, a couple days in advance.  Seriously, I feel good!  No cancer “symptoms”.  Just fatigue and my finger pain! (water hurts my hands!)  So when my CT scan said that some spots had grown, (GROWN!)  I was thrown backwards.  Now what?!

THIS IS LIFE IN THE CANCER LANE.

Tick tock…

Chemo today. (I’m now in my 6^th month!) I am madly itching on the inside.  The same side where the cancer grows! I can’t reach it.  I am literally using 3 fingers to type.  My body is literally dripping sweat from the chemo coursing through me.  I am tired, yet I can’t sleep! I am NOT medicated.

THIS IS LIFE IN THE CANCER LANE.

Don’t worry.  I am not depressed.  I am not done fighting. I am just, at this moment, (It’s 2:30am!) exhausted.

At least once a week, someone says to me that they forget that I have cancer because I seem to be doing well.  I guess I am.  But I don’t forget.  We don’t forget.

No need for any nervous phone calls or texts to Big B. (Seriously, don’t! He doesn’t even know I am up!) No need for an intervention. This is just the “not so pretty” side of Life in the Cancer Lane that you don’t see.  Tonight…errr…this morning… I had to share what it feels like to be hanging upside down in the loop of a rollercoaster.  You just hold on, and close your eyes.

Perhaps now I can sleep.

Tick tock…Goodnight.

Even if I didn’t know it

Pink Ink…

Editors Note: I wrote this on the plane ride back to AZ…tired, and in the arms of medication! So please excuse any and all spelling/grammatical errors!  But as they say, “it had to come out!” So here goes!

Did you miss me?  It’s been a rough ride recently.

But this weekend, I got a reprieve from my chemo prison!  What did I do?  I went to Disney World!  Just kidding!  But it was definitely a roller coaster ride! Lace up! Here’s what happens when a girl goes home.  (Imagine Diddy’s song playing…”I’m coming home, coming home…”)

I’m coming home

FRIDAY:  I grab my bags and head to the airport.  Simple right?  For most, it would be.  But you know…I have a few issues.  First, there was the simple fact that this would be the 1st real flight I would be taking since my 2nd diagnosis, and 6 months of chemo.  Up until 24 hours before I left, I wasn’t even sure I would be able to get on that plane.  How would I feel?  Would my platelets be high enough?  How about my white blood count?  As it was, I was only able to use 2 or 3 fingers on either hand b/c of the chemo.  (Every time I wash my hands, it feels like my bones are breaking.  I’ve dubbed it ” broken bone syndrome”!)  But I was determined.  Did I mention Dad was getting an award in Philadelphia?  Or that Chuck was running a race in Philly…in my honor?  Yeah.  So I kind of had to go.  The catch?  No one really knew I was going. Dad & Chuck were clueless! I love surprises!

So armed with my lymphedema sleeve, compression socks, various warnings from my Head Nurse/breast whisperer…and some Valium, I hopped that plane and made my way cross country. No issues! (side note…the 1st thing I noticed while walking through the airport?  All the brown people!!  I was reminded how few of us there are in AZ!  But I digress!)  Soon, I was checked into the hotel, with the goal of resting briefly before having a late dinner with Lizzie. Like a true friend, she agreed to meet me for dinner with just a few hours warning.  But I’m jumping ahead.  As I am laying in bed, letting Big B know that I made it, my room door started rattling!  What the hell!!?  I mean, it is Philly after all! Murder capital! I was scared!  I told B to hold on, cause I may have to call security!  “WHO IS IT?  I’M CALLING SECURITY!”   Next, I hear a tiny voice say ” It’s your mother!”

PAUSE!  I had mentioned to Mom that I MAY come!  I knew that she was flying up, but I thought she was flying in with my dad…the next day!  But more important, why did she have a key to MY room?  Yeah, well the hotel folks know her and my dad, and evidently give them what they want! (STRAIGHT UP SIDE EYE)

The rest of the evening went smoothly after I picked my shocked face up off the floor.  I was glad to see my mom.  Also, my time with Lizzie is always a joy.  She’s a nurse, so we had no issues talking the “dirty words” of Life in the Cancer Lane.  When the conversation became too much for my dear mom, she excused herself and went upstairs.  Later that night…actually after midnight…I spoke with my bro who had just landed from Atl.  After about 20 minutes of shooting the breeze, I told him I was in town.  He totally missed it.  ”Umm…SURPRISE!”  He finally got it.  “That changes everything”.  Yes.  Yes it did, because he still didn’t know Mom was in town.

“Ok, I will see you tomorrow.”  I said as I hung up as I laughed to myself…and fell immediately back to sleep!

SATURDAY:  My day started very early with breakfast with another close friend. “KT” was also a trooper because we were texting late the night before, making plans for breakfast.  I wasn’t sure I would make it. I was tired, and sore. But dammit, I would try.  KT was there early,  bright and bushy tailed.  Both of our lives have changed drastically in the last few years, and it was great to see her so happy,  Next up?  The Barnes.

I couldn’t come to Philly without checking out the BarnesFoundation Museum.  The museum project that dragged my Dad into court.  The museum, where he’s the Chair.  It has been my dad’s pet project for the last how many years.  The Museum Gala opening that I missed last year due to Radiation.  So I HAD to go.  I owed it to my dad to see his latest legacy.  So mom and I walked the beautiful galleries.  It is beautiful and well worth a visit the next time you’re in Philly.

The Barnes Foundation

After my visit, Chuck was going to pick me up so we could pick up his Race bib.  Or so he thought.

As he pulled up, I got in the car…and so did mom.

SURPRISE!

His response “WOW. Ok.  I see what kind of weekend this is going to be.” LOL.  Off to Race headquarters.

Mind you, Dad still didn’t know I was coming.  Then Mom got THE CALL.   His plane was delayed.  He wouldn’t get in until 7:30. (He was supposed to land @ 2) Did I mention that the Gala started at 6?  Chuck laughed.  After all, he was going to be hanging out with his buddies at their high school reunion.  After all, he was at the Barnes opening last year…the one I missed!  So he dropped us off at the hotel with a “good luck”.  At the same time, mom was starting to panic!  She doesn’t handle stress well really.  But I was good.  In my mind, I was already planning an acceptance speech.  I mean, I got this.  I speak at events all the time now! I got this!  Yeah….mom was not having it.  “Why should you accept it?” (Thats not your thing mom)  “He’ll make it” she tried to convince herself as the clock crept past 6, and we enjoyed the cocktail hour. ( I asked a few TV execs when I could expect PinkwellchickTV)  The clock passed 7:30.  Then 8:15.  I was good!  I was ready to give “Dad’s speech”!  But alas.  Dad walked in…as they were announcing the person who was going to introduce his award.  But 1st, he saw me.  You couldn’t script this!  Cheers all around, as folks in the audience watched him comprehend I was there.  The award was announced.  He brought us up on stage, said his thanks, and walked off.

But what about ME!?  Yeah, you know me.

Dad, where are you going?

“Good evening everyone!  We’re going to go a little off script right now…”

And so it began.

I used the opportunity to thank both my parents for teaching me from a young age, the value of helping others.  And to thank my parents for helping me as I fought cancer.

Then I dropped the mike! (FIGURATIVELY) I couldn’t let the opportunity to publicly thank my folks for all they have given Philadelphia, and me pass by!  Nothing is promised.  My work was now done! The look on my dad’s face? #priceless

SUNDAY: The final piece in this frenetic puzzle.  Chuck was running the Broad St Run.  The 1st time he has EVER run an organized event! But he and his best friend got a team together and raised close to 10k.  It was supposed to be a surprise to me.  But…let’s just say…someone…not Chuck…couldn’t keep the secret! (Ahem..mom) It was a beautiful day!  All the runners wore red in tribute to the Boston Tragedy.  It was a beautiful thing to see.  But the best part was when he handed his medal to me after the race!  Tears fall as I write those words, thousands of feet above the ground, as my plane races back towards AZ.  So you see it was a fast paced weekend, for which I will pay later.

I apologize to those of you I didn’t get a chance to see! I will be back and will see you! But this weekend, I had to focus.  I had to be present in the moment!

You see, It was  the 1st time my immediate family was all together since my 2nd diagnosis.  Back in my home town, celebrating…family!

It was also the 1 year anniversary of my completion of radiation.  You know, when I thought I was done!?  But alas, I am still in this fight.

It was also the weekend that I could FINALLY put fingers to keyboard and start blogging again.  I was feeling too heavy.  Many blogs have been floating in my mind, itching to explode out of my fingers!  Or at least the 3 fingers that work! Ha! But they just couldn’t come out! (more on that soon!)

But I feel “light” again. I feel “able” again.

For that,  I say thank you to Big and Lil B for freely sending me off to Philly at the last minute.  To Mom, Dad, and Chuck I thank you for  a weekend of family, love and support of each other.

I love you all.

I am back.

This weekend was just what I needed…even if I didn’t know it.

All together!

WE did it!

Broad Street Run

Self determination

Pink Ink…

Editor’s note: This is a repost from today’s pinkwellchick.com

Heart Walk 2013 finish line

Heart Month has come and gone! Did it impact you in any way?  What did YOU do to challenge yourself or others to be heart healthy?  It was a tough month, but I made it!

My goal, as motivated by Star Jones, was to do 28 days of fitness!  I mapped out my plan, got a calendar, some weights, saw a trainer and got to work.  It was harder than I expected!  Who wants to exercise for 28 days straight?  Not me!  But I was determined to try.  If Stuart Scott could work out right after chemo, I could at least try!  It got a little complicated when I started getting transfusions…often!  But despite a February of 6 transfusions, and 3 chemo treatments, I finished!

I completed 24 of 28 days of exercise!

It may not seem like a lot, but it required commitment and determination.  There were days that I lifted light weights before being hooked up to a machine.  Other days when I rolled out of bed, walked, then, rolled right back into bed!

Why did I do it?

• Most times, I felt better after exercising.  Isn’t that what all the doctors tell you will happen?
• I have metastasized cancer in my lungs.  I need to increase my “lung strength” through exercise.
• I wanted to set a good example for my daughter, and prove to myself that I could do it.
• Heart disease KILLS!

The best thing to come out of this, is that I continue to exercise!  However,  I have scaled back my ambition.  I now work toward 5 days a week of exercise. That is still tough!  But the doctors say that is a good goal and possible to maintain.

Just because Heart Month is officially over, doesn’t mean you should go back to old habits!  The 1st part of this month had me in the hospital 3x in 1 week getting transfusions. I was worn out! Over it!  But, this weekend I participated in the local Heart Walk! Determination!  It was great to see FAMILIES walking together. My daughter is in her 3rd week of trying to be a vegetarian! A 10 year old who is willing, albeit begrudgingly, to try new veggies! I couldn’t be happier!

What else can you do?

If you are in the Phoenix area, join me and other Go Red Ambassadors at the 2013 Red Dress Cocktail Party on April 3, 2013.  Check out www.2013reddresscocktailparty.eventbrite.com  for more details.

Not in Arizona? No problem! Contact your local American Heart Association and help us continue to educate others about heart disease.

Or, just eat right, and work out! You can do it!

Remember, it’s an exercise in…SELF determination!

Best medicine

Pink ink…

 

Two girls from different parts of the country head off to the same college. They instantly connect, and promptly try to kick another girl out of her room so they could take it over, and then be roomies. (who DOES that?)  Over the next 20 years they pledge the same sorority, have adventures, fight, make up, share crazy stories, and jokes.  Turns out, the joke’s on them. They also share…breast cancer! (sick joke)

 

I’m back!

It’s been almost a month.  In the last 72 hours I have gotten several calls, and texts from people saying “Where are you”, “Are you ok” “You haven’t posted in a while” etc.  But it took a call from AC that made me realize I had indeed fallen off for a while.  You see, it has been a helluva month!  In fact, too much to really recount.  Here are the medical highlights.

• I only have 1 in 4 weeks off from chemo. The actual treatment remains pretty consistent, with few complications while receiving the drugs.
• BUT, I get transfusions anywhere from 1-3 times a week.  The docs have changed my prescription for chemo yet again, because it continues to affect my platelet count…resulting in transfusions. One of the worst side effects is “drunk talk” when I can’t match my words to what is coming out of my mouth, and the dizziness that comes with “low blood”.  The 1^st week of March I spent 3 days in the hospital trying to refill my body with platelets and blood. Worst. Week. Ever.
  

  Platelets…again

• I’ve been in chemo for 4 months. No end in sight for chemo.
• No. End. In. Sight.

Despite it all, I try and power on. I try and keep up all my activities, keep up with my Bs, not complain.  I try not to constantly download on Red Ink or my family…because they have their own stuff!  Most times, that is easy to do.  After all, I am still alive.  I’ve got hair! I can still do stuff…when I am not at the hospital.

But when I got that call from my former roomie who also has breast cancer and her own issues, it was like I could download it all in a way to someone whose reaction wouldn’t be to “feel sorry” for me.  We could make jokes about our crooked, jacked up boobs.  We could share jokes about folks who “still don’t get it”. We could joke about the ridiculous weight that we are gaining thanks to the meds etc.

Side note: I gained 8 pounds in 10 days!  I burst into tears when I stepped on the scale at the doctor! WTH?!  I learned it is due to the chemo and the STEROIDS that accompany my transfusions. Could they have told me that? Not that it would have helped.  Talk about a CRUEL joke!  Ironic, since the same girl we tried to kick out of the dorm room once called my mom and said she thought I was anorexic. (Umm, black girls aren’t anorexic…at least not last century! LOL)  It is a cruel joke that the thing I almost hate the most right now, (other than my lack of control over my schedule) is that I am turning into a fat girl, with flabby arms.  Is there no end to breast cancer fallout?  I am working out, eating right, and have wine only on rare occasions!  This is cancerrealtalk! Gaining weight sucks!  Yes, it’s vain! I’m not asking for sympathy.  Just sharing my reality. #CANCERREALTALK  (Yeah, still doing the bikini. It was 90 degrees & I wasn’t at Mayo! Don’t judge me! HA!)

Flabby belly & thigh! #cancerealtalk

But back to our convo.  We talked a little over an hour.  We questioned in a serious way, how we ended up in the Cancer Lane. (Was it stress? Earlier life issues? Environmental?) In a way, it was also sad.  I desperately want the two of us to get together.  Because of our medical restrictions…and the fact that we are 2000 miles apart, planning is a little difficult.  Until then, we will continue to LAUGH and virtually walk this journey together.  Thanks AC!  Good times!

Another episode of “Is this a joke?”

 

Aesthetician: (trying to wax my eyebrows) This is so hard! Your hair is so fine.  That is so weird, since your hair on your head is so COARSE! So I’m going to get in there.

Me: (Crickets)

 

Are you serious?  The last thing my hair could be described as right now, is coarse. This was the 1^st and last time I will use her!

 

Well-meaning “friend” at a gala this weekend: “I just want to say, you look great!  It really seems like you are holding…even GAINING weight! (pointing to my stomach)

Me: (squinting eyes) Umm, thanks! You’re kind…

 

This is my life!  And I’m still living it.  I’ve got a lot to share.  So stay tuned.  And if you have a good joke you want to share, please do. (Thanks TM for your Chemo Monday jokes!)

After all, laughter is the…best medicine!

Randomness

Pink Ink…

One of the blogs I follow occasionally has posts called “ In other Randomness”.  So today, as I sit waiting for my 7^th transfusion in the month of February, I thought I’d capture the randomness of my life! (This mini iPad has been very useful! Thanks mom & dad!) So “lace up” as the kids say, for some random thoughts today!

• Random: Watched the Oscars with one of my Phoenix BFFs! You know that the Oscars are my Super Bowl! Last year CH and I texted thru the whole show.  But this year, we decided to watch together with Lil B! Home made heart healthy pizzas, and cupcakes! Great idea! It was a long weekend and I was exhausted.  Plus our texting fingers could never keep up with our snarky comments! Lol CH is like me in that we both try to see all the movies, so we can make informed opinions about the winners. Even Red Ink and her little chickadee watched the show in Red Boas! But alas, this year’s awards were painfully predictable. Loved Seth McFarlane though.  Most of the jokes went over the head of viewers unless you “follow” Hollywood like us! LOL My true friends know me, b/c they texted me during the show, and after wanting my opinion on the awards…and the dresses.  So in a nutshell.  Best: Halle Berry (making up for the Golden globe debacle), Charlize Theron, Kerry Washington, & Stacey Keliber. Worst: there were so many, so I am going with ALL the Jens! Jen Anniston (Change your hair) Jen Lawrence (Dress aged her) Jen Garner (Do something…anything different!) BUT hats off to JENNIFER HUDSON for reminding Beyonce that THAT is why she won the Oscar! TOP performance! Even my dad was watching Oscars from across the country.  He reminded me we saw the original Les Miz in London, before it came to the US.  Good times!
• Random: Spent the weekend celebrating the 50^th birthday of one of my close friends.  While the weekend was spectacular (she’s a party planner after all), what struck me was how much her friends love her.  You would expect that right?  But it was really something listening to people from all periods in her life, and from all around the country (folks flew in!) say the same thing about her.  In the 4 short years that I have known her, I have known her to be just what they describe. “Always positive, even in crisis. Loving, a true friend. A “Joy” to be around. (Her name is Joy)  She has truly been a blessing to my family and me!  As I was dancing (yes dancing!) at her Fab Party, I wondered if I would make it to 50, and if I did, what would my legacy be.  What would my friends say?  A friend yesterday wondered aloud what our daughters would say about us, if asked to describe us. Hmmm…
• Random: I realize the body plays tricks on you, and I need to follow my own advice! I have been really committed to being #hearthealthy for the month of February!  I have exercised 23 of 27 days so far.  I feel great for the most part! Yet, I have had more transfusions in this month than I have in 16 months! Wow!  Over on http://www.pinkwellchick.com, I tell folks to check with a doctor before they start any new exercise or food program.  Well, I got the approval to work out, but didn’t meet with a trainer until this week. (Ironically, to help me keep exercising in the months ahead!)  Fortunately, she is a trainer who is educated in working with cancer patients.  She told me that some of the exercises I was doing could have led to lymphodema! Remember that issue! My arm could have BLOWN UP, and never gone down.  Your girl would have been walking around with a fat arm and a tight lymphodema sleeve. No bueno!
• Random: Thought this shout out was appropriate for today as I get my millionth transfusion!
• IMG_1157

  

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As I get more platelets, enjoy the…Randomness! 

Beasts of the Southern Wild

red ink…

Watched Beasts of the Southern Wild with my kids tonight and was just awed once again by the performance of little Quvenzhane Wallis, but as much by the story itself, and it made me think of pink ink and Lil B.  Can’t you just see pink ink staring down the “beast” in her life?

The story also made me think about how I’ve gone from being a sweet, nurturing mom who hugs my kids and peppers them with “I love you’s” to being a pretty tough mom as they are growing up and getting ready to go out into the world.   I feel like I’ve got to get them prepared to face the “beasts” that await them, just like Hushpuppy’s father and my friend pink ink, to make sure that they can “handle their business.”

My middle son (age 15) laid his head on my lap tonight for the first time in a long time and I stroked his head and remembered, missing all the many times that I hugged each of them so tightly and rocked them to sleep.   But I can’t spend the precious time that I have left with them before they’re out in the world, rocking, reading stories and hugging them,  I feel like I have to make sure they’re strong and ready – like Hushpuppy.

If you’ve seen the movie, you know that her daddy’s love for his daughter wasn’t at all pretty – it was tough, gritty, full of cusses, with no room for tears and little space for sentiment, but to be sure, it was love.   It was love because his goal in the end was to teach his daughter independence and by giving her independence, to give her freedom.   Isn’t that what we are all trying to impart to our children?   In the end, Hushpuppy gave her daddy back the love  by giving him a last bite of the fried ‘gator that he remembered her mama cooking for him back when they were together.   And he knew, in that instant, that she was going to be o.k.

Love this movie!   Love this story … To be sure, I’m going to keep hugging mine and saying “I love you’s” but I’m also going to be sure that they are at least half as tough as Hushpuppy.

Lil B has this spirit in her . . . when I returned home from one of my  visits last year, I remember looking at my own kids (who are all older than Lil B) and thinking about how very competent and independent she is.   She is sweetness, with a sentimental heart, to be sure, but she already has on her big girl pants and has been wearing them for a while now…

Can’t wait for the Oscars, tomorrow.   This child, Quvenzhane, should get special recognition (even if I can’t pronounce her name)!   If you haven’t seen the movie, see it . . .

Getting It All Done

red ink . . .

Pink ink and I had a great talk the other night.   She was sharing her sense of urgency, reinforced during a recent visit with some college buddies, that she needs to make so many things happen for Lil B’s future just in case.   I reminded her, and she laughed in agreement, that I always go a little nuts when I leave town without my family, cleaning, cooking, shopping, making lists (which they and my husband promptly ignore) even rearranging my underwear drawer, so that by the time I get where I’m going – I’m totally exhausted, but feel a little less guilty for being away because I have worked so hard to “get it all done.”   We both acknowledged the differences between the uncertainty she faces and my silly trip preparations, but we also acknowledged that whether it’s laundry, dishes, work, cleaning or something much, much more important, like telling your daughter all that you think she needs to know, just in case, we may never  – either of us – get “it” all done.  Perhaps the best we can all do, is to really be in the moments that we’re in and give our whole 100% selves while we’re there, and just hope it’s enough – enough love stored up to last.  Then just maybe we can have a little faith that whatever we don’t do will be far overshadowed by all that we did do.

With that said, I’m going to watch a movie with my best baby girl . . .