Randomness

Pink Ink…

One of the blogs I follow occasionally has posts called “ In other Randomness”.  So today, as I sit waiting for my 7th 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!imgres-4
  • Random: Spent the weekend celebrating the 50th 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!

As I get more platelets, enjoy the…Randomness! 

Beasts of the Southern Wild

red ink…c5838263e2b9ab4be97e1aa0aa26bdd9

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 . . .SONY DSC

Out of Touch and Oscar Buzz

red ink…

Hey everybody, in case you were wondering, I’ve been here all along-  just, appropriately, in the background while watching pink ink do her thing.   This blog, you may remember, was started to give her a place to tell her story and she has done just that magnificently with humor, style and grace through it all!   Lately her posts leave me humbled, speechless, sometimes really embarrassed that I had the nerve to complain about my day, or they reinforce my sense that as much as I want to, I just can’t make this go away by prayer, petition or anything else.   I keep praying mind you, and I keep talking to her whenever I can catch her (her sense of urgency is apparent in the way she moves), and sending love to all the B’s in whatever way I can.   Lil B and I talk and text pretty regularly, and as much as I love to hear that little voice or to get her messages, my heart breaks a bit every time thinking about the road that she’s traveled with her mom.   Barb and I don’t talk every day anymore – as I said she is truly on the move – so I don’t always know what’s happening from moment to moment as I did when this all began.   I know she’s been blessed by the presence of her girls in Phoenix who have walked with her and lunched with her and drank with her and cried with her when and where she needed it most, and I’m honestly grateful for them, and just a small smidge envious – but not jealous, really just wishing that I could be there in that way to share this time, however much either of us has, together.

For example, this Sunday, I’d like nothing more than to be sitting with her and lil B  (and my Shelby, of course) having our own little Oscar party!   We may just have to have a Skype party complete with feather boas!

Driving home this evening, I heard about what seems to be an amazing documentary about the emotional and physical scars that cancer leaves on women’s lives and on the lives of those who love them.   It’s called “Mondays at Racine” and has been nominated for an OSCAR this year for best short film.    See Mondays at Racine.   Listening to the report on NPR, all I could think about was that pink well chick surely has an oscar worthy documentary in all that she has shared.   Somebody just needs to tell those people . . .

My time

Pink ink…

IMG_1325

Week 70 of Life in the Cancer Lane

Act 1:B” is 8 days into her heart health challenge! She is exercising 30 minutes a day for 28 days as a way to promote heart month and also to get back into working out.  She feels great, though it is a challenge.  Friday, Saturday, and Sunday she attends a cocktail party, a Valentine’s party, and a birthday brunch. By the end of the weekend she is starting to look a little worn out. Monday she spends the day at the hospital getting transfusions because her platelets and hemoglobin counts are low.  But she still manages to get in a workout! Fade to black…

Act 2: “B” is back up the day after the transfusion, working out, and running errands. Wednesday, “B” goes in for her CT scan to see if her cancer is shrinking or if it has spread. She is hoping that she will also get a break from the chemo. While at the hospital, the nurses can’t access her port. “B” argues with the nurses because they want to use veins in her arm…that are very damaged.  One nurse says, “I’ve been doing this all my life!”  Eye roll. “B” struggles not to cuss her all the way out! So they access her arm, do the scan and send her on her way. Fast-forward 30 minutes, “B” looks down at her arm, and sees blood soaking thru her sweater! In a panic, she calls the doctor. An appointment is scheduled for the next day. “B” continues her day by having lunch with a friend visiting from out of town, and ends the day by going to a Pink concert.  You learn later, that all day “B” has been fighting nausea and the feeling that she was about to faint. Fade to black…

Act 3: It’s Valentine’s Day. “B” is back at Mayo for a blood draw, to check her blood counts, and more important, to learn her CT results. Hoping for a quick visit so she can head off to a Valentine’s Day lunch with her hubby. “B’s” day takes a drastic turn when her counts show her platelets are at a critically low point. (3,000. Normal is over 250k) So she is headed straight to the hospital because Docs are worried she could bleed out.  But she can’t go before learning that despite the chemo continuing to shrink the cancer, she will continue with chemo INDEFINTELY until they are gone.  “B’s” head drops, and silent tears fall onto her lap.

Fade to black…

My week in a nutshell.  Again, you cannot script this. In a matter of days I have gone from actually feeling pretty good to feeling pretty bad.  I love working out again.  I actually thought I might not have to have a transfusion, this past Monday because I was feeling good.  I was sore, but I thought that was from “getting back in the game”.  Turns out, it was from having blood issues! Ha! My body is fighting…itself.  What does a lack of platelets do, or look like?  I’m tired. The red dots I mentioned were just the beginning.  This week I woke up with blood blisters on my tongue (really gross) and inside of my lip.  My ears were bleeding.  My cuticles bleed.  The blood pressure cuff they used to find a vein in my arm left a bruise that looks like I got punched…Chris Breezy style! (the pic doesn’t do it justice)  I also have headaches that I must watch, to make sure I am not bleeding in my brain.

blood pressure cuff did this!

blood pressure cuff did this!

One of my close friends keeps teasing me about not staying in my bubble.  But it’s hard.  Weeks like this remind me that I must still live, while making sure not to put my life at risk!  Was it smart to go to see Pink? Eh?! 50 50.  Her body is fabulous, so she inspired me to keep working out! Her show was great! And I’m a true concert lover!  By the end of the show, as my vision started to get blurry, I knew it was time to go! So rest assured MH, I’m being careful!

The hardest part of this week was learning that I would not get a break from chemo.  While chemo is not as bad as it was a year ago, it still sucks.  I think I am finally tired of being at a hospital/clinic.  I had accepted that I would be in and out of chemo forever.  But I didn’t realize that I wouldn’t be OUT of chemo until the dots actually go away.  Only then, will I get a break.  Or if B and I decide that my body can’t take it anymore.  That was tough to hear.  Yes, there is the blessing that the chemo is working.  Yes, there is the blessing that it is still not in my kidneys or liver.  But despite what you see on the outside, chemo is still affecting me…us.

Ironically, the best part of my Valentine’s Day was when I was at the hospital getting my transfusion.  I was really crying, and nothing could stop my tears. Big B took my face in his hands and said, “ I know you are disappointed.  But chemo gives us TIME.  I want more time.  I need more time with you!  It gives us TIME.  When you truly can’t take it anymore, we will stop.  But now is not that time.  Baby, the chemo gives us time.”

As I sit here writing, the tears are steadily falling on the keys.  He is a gift that keeps on giving.  No chocolates or flowers or purse could have affected me like his words. His love was the reality check,  the gift that I needed.

So today I am slowly getting myself together. I am going to try and workout.  I am going to watch a couple of my celeb “keep fighting” videos, and I’m going to keep going.

I’m going to enjoy…my time.

Get Healthy

Pink Ink…

Sitting in the office listening to QParker from old school group 112.  He made a song entitled “I’ll Wear Pink for You”.  Reminded me that I need to give a quick update.  Here is the quick and dirty.

Good news:

The chemo seems to be working.  It has cut the spots on my lungs in half.  Now we know they will always come back, (hence the “incurable” nature of my situation) but at least they are being kept at bay.  The chemo doesn’t wear me out the way the “Red Devil” did. That is a blessing.  I can still do most things.  So Lil B is happy to see me when she steps off the bus.  My hair hasn’t fallen out.  It HAS stopped growing and is VERY dry. But it is hanging on for dear life! Lol My eyebrows remain a little rough looking, and I can’t wax them.  But, again, a small price to pay.

The not so great news:

The chemo is KILLING my platelet count.  I mentioned that before.  Last week I was back in the hospital.  My count dropped to a scary 7,000.  Remember, it is supposed to be around 275k.  So something as simple as flossing my teeth could cause my gums to bleed and not be able to stop.  My blood has developed issues.  Once the easiest kind to match, it now takes a while, and the docs must watch for reactions.  Last week, two of my close friends were privy to one of these reactions.  While I don’t think the reaction scared them, I think they were definitely amused when the drugs they gave me made me totally incoherent!  (Hello, Demerol + IV benedryl) It was actually kind of funny.  In my mind I knew the words I was trying to say.  I tried really hard to get them out.  They sounded like….”klsdfhkjwefuyegpouh..efhvsdpepo”.  Complete nonsense!  Anyway, I was also put on a steroid that shot my blood pressure up into orbit. We are managing that.  This past Monday, I almost couldn’t get chemo b/c I was all jacked up.  But we pushed through.IMG_1108

Hopefully chemo will be done in 2 weeks.  I will lay for a CT scan, to see how much the spots have shrunk.  If all is good, I will have a break from chemo for a couple months!  That is EXACTLY what I want.  A chance to rehabilitate this body.

Despite the war being raged in my body, I am well.  Just VERY tired.  I have had to live in a bubble for a couple weeks. I cannot afford to get sick. But I managed to get out once or twice.  All three Bs are laughing and living.  I am definitely getting the “You don’t look sick” comments again. Don’t be fooled.  But we got this.

IMG_1124So again, thanks for all the love!  February is Heart Health Month.  Take a few minutes and check out http://www.pinkwellchick.com for my Heart Health adventure. You know I have to keep busy, so February is all about Heart Awareness.

Join me, as I…get healthy!