Oh What A Night!

red ink…

imageArriving to a receiving line of cameras flashing, smiling faces with headsets on, pink ink had her red carpet moment. At last! Once inside the door of the theatre, a special center seat awaited her where she was surrounded by love in every seat and on every side. The place was packed. Pink ink’s play “Life in the Cancer Lane” debuted last night in Phoenix and she was there to see it all. Now let’s be clear, this was no small feat. She left the hospital yesterday morning, rested for a short while, and rallied to get herself up and ready for her big night! So many of us worried about whether it would be too much for her to make it out because she was still weak following her hospital stay, but she, as always, was determined. The night before, she basically threatened the nurse who was administering her night medications saying “you’re NOT going to stop me from going to my play!” I think the lady was a little scared honestly. Lol! Pink ink’s play has been a labor of love. She has poured her soul and her journey into writing this wonderful series of vingettes that chronicles, not only her journey, but that of many other breast cancer survivors. It’s real talk, full of insightful advice for anyone going through this themselves or with someone they love. She hit every topic imaginable from the expected “diagnosis” and “chemo” to the more sensitive like “hair,” “sex,” and “crazy-ish people say.” I laughed out loud and cried unconsolably recognizing some of our conversations in the play, all within the span of a couple of hours. For me and everyone in the room, it made us think about the effects that breast cancer has on everyone it touches. She took the task of telling this story more seriously than almost anything else I’ve ever seen her do. She was disciplined and precise about her writing process, and deliberate about soliciting and receiving feedback. I don’t know that people, including me, understood how serious she was about this at first, but her commitment made each of us get on board, one by one, so that we became as invested in her achieving her vision as she was. She inspired me and so many others (We started writing at the same time and my book still hasn’t been published BTW.) She wanted to be heard because she had something important to share – and last night all ears were open. There are a whole host of people to acknowledge – to be clear, I don’t know everyone. Just know, whoever you are, that I’m certain that pink ink is eternally grateful for everything, from the smallest thing to the most monumental, to make her dream a reality … from her girls in Phoenix who had the idea to put up the show, secured the backing for the show (Thank you Cox Communications), and laid out the beautiful reception, to those who recorded every bit of revised dialogue and stage direction to those who assisted with props to the unseen narrators, to those who traveled from near and far to fill the house, to her husband who gave her introduction in her stead, and to everyone who inspired one of the monologues. It was a beautiful night. At the end of the night, she had just enough energy to spare to spend a little bit of time at the reception to take photos with the “cast” – those in the play and the rest of us who are in her much larger “supporting cast.” Everyone wanted her to know that they were there to be a part of her vision, and by the looks on every face – we were all SO proud of her. Pink Ink you made your mark! My mother always said that she wanted to “receive her flowers while she could still smell them.” Just before leaving the reception, someone walked up to pink ink and put a single pink rose in her hands. She got into the car, exhausted, and on the way home and held that flower in her lap, and no doubt, took in the scent of sweet success. Now on the to book and the movie!

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Have you had yours?

SONY DSCred ink. . .

Talked to pink ink today and promised I’d post.   With much hesitation, I went to have my annual mammogram today.  It was clear and  I am truly grateful.   Honestly,  given all that has happened to Pink Ink, I was scared to go in and delayed my appointment until after my birthday.   My breasts are lumpy (benign fibrocystic my doctor tells me), and I had to have a biopsy 3 years ago, so I worry maybe more than most.  Pink ink has shown me how your life can change in an instant.   I was just about in full out panic (kind of like the “turbulence on the plane” panic that pink ink and I share) when I reminded myself about the other valuable lessons that pink ink and others have taught me . . .  Lessons about the importance of early detection and how finding out early can extend and save your life.   So I put on my pretty pink bra and matching big girl panties and headed off to my mammogram.  Not knowing is not caring for myself, or my husband or my kids.   I had to do this.   My doctor’s office makes this the best experience possible, but at the end of the day, there you are boobs out in a cool room being smashed to a pulp.   The worst part was waiting for my doctor to read the films and give me the okay to get dressed and come to see her.   I tried to look at magazines, got a cup of tea, and tried to be calmed by the office fountain.  None of it worked.  I exhaled when she came in and told me that I could get dressed.   I knew the routine.   I knew then that I was o.k. today.  I thanked God and posted on Facebook to remind people to get their mammos no matter how scared they are.  As I said there, reach out to me if you’re scared!   Today I celebrate, and  I won’t stop touching these tatas during my regular self-exams, which are just as important (remember pink ink found her lump herself after having a clear mammogram months before)!   Don’t wait another day…make your appointment and by all means, regularly touch your tatas!   We owe it to Pink Ink and to all the survivors out there.  Make it happen!

Post

Pink Ink…

Good Morning! Just a quick interruption of the regular scheduled post.

Some of you are returning to this site after reading about, or hearing about a post RedInk posted last night.  Unfortunately, we had to temporarily take it down.  This is my BRIEF reasoning on why.

My family looking on, as I recuperate! #couldn'tDoItWithoutThem

My family looking on, as I recuperate! #couldn’tDoItWithoutThem

RedInk wrote a WONDERFUL, LOVING, HONEST post about our reconnection this past weekend.  And what a weekend it was! I can’t really begin to describe all the emotions we have experiences.  JUST what I needed and so wonderfully captured by RedInk. Whether it was watching our girls love on each other, my vomit, Red telling me to sit down and shut up, or the true comedy of Red rubbing my feet as the skin slouged off.

Rubbing dry, crusty skin off! #DoneWithLove

Rubbing dry, crusty skin off! #DoneWithLove

But in great moments there are often miscommunications/misunderstandings.  Some we addressed in person, through laughter and tears.  Others we didn’t know existed…until last night.  Unfortunately, the irreplacible memories we created were overshadowed by the “almost correct” health info.  Normally not a big deal…until it effects LIL B.  I will be brief.  We don’t have 100% confirmation of liver presence.  We will find out shortly. The HIGHLIGHT of my stay in hospital was that it was determined that it was NOT in my brain.

This requires a STANDING OVATION!

I carry this to the post, b/c we were immediately deluged by phone, (cell and home), texts, twitter, and, calls to LIL B ( COMPLETELY UNACCEPTABLE) about my status.  Fortunately, I intercepted these WELL MEANING communications.  But it teaches us all a lesson.

When this type of information comes out in the future, please wait to go into detail of the news or the expression of your support, when you text…only with me or Red INK.  PLEASE don’t call my house. Please don’t contact Lil B, even to say you support her.  WE have entered a new era, where she can’t have EVERY detail w/o direction from Mommy and Daddy. I value EACH & EVERY bit of support, but last night as her head lay in my lap, I felt like I was protecting her from a falling wall.  Thank you to those who did in fact recognized that Red’s presence got the 3Bs through a very difficult reentering society.  Without Red, Mini Red, and Big B’s mom, we would definitely ALL be back at MAYO!  More on that later!

Thank you for listening/reading this.  Please don’t take this as an admonition!  I was floored once again, by all the amazing expressions of love.  Some knew something was off when the post was quickly deleted.  Know, I am GRATEFUL that Red wanted to share our love and experience of the past few days.  But, I did not appreciate people questioning if I was in the hospital a week (like Red said) or a few days longer, (like I instagrammed)  Really?  Most of all, I love each of you, for caring and for understanding that we now must wrap B in even tighter arms of love and be mindful of our responses.

ok, that’s it.  I feel like this will be an epilogue somewhere! So keepy our eyes open.

Now back to your regular scheduled…post.

 

 

Update: That RedInk post will be back with a few tweeks.

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!

Mtume

Pink Ink…

One year and 2 days ago, I had my double mastectomy. I can’t believe it has been a year!  And yet, here we are.  Still in the Cancer Lane. Originally, I thought I would do a year in review for my boobs.  (I still may) But yesterday my girl and I were laughing at all I had been through this week.  I think that may be a more entertaining read.  Here we go.

Monday: Arrive at the hospital at 5:30 am for surgery. No problem…until I break into tears realizing that I am about to get a port put in my body for the rest of my life.  Dr. Money (?!) tells me he will take it out in 10 years. Love him! Then I plead with him NOT to just throw me on the operating table.  I have a cracked rib after all! Then the anesthesiologist runs down the meds I am going to have.  One is propofol.  My response? “That’s the Michael Jackson drug!”  I hear the doctor later suggested to Big B that perhaps I should see a counselor! Haha By 1 pm, I am transferred to the breast clinic for chemo. Fortunately, I am still heavily medicated and sleep through it. I roll back home at 6pm, where I promptly threw up. Long day.  Did I mention that I got a “keep fighting” video from Samuel Jackson! (Thanks Yaz & KF!)

Tuesday: Sleep! I get a “keep fighting” video from Grey’s Anatomy actor, Jesse Williams. (He’s so pretty) Mayo calls and says my numbers are so low, I will probably need a lot of blood.  They will check back in in 24 hrs.

Wednesday: My Lovies come over to sit with me, because I can’t go walking. My port actually feels good.  Not as sore as the last time. I can move my neck!  But I refuse to look at it! Lil B has a ½ day.  An hour after she gets home I place an emergency call to my girl Maria… leaning on the Sorority shield, as they say.  She must come and get Lil B.  I am so tired I can’t keep my eyes open.  It’s not safe for her to be here with me if I literally can’t make it to the bathroom.  Maria arrives 20 minutes later.

Thursday: I spend the morning with one of my close BFFs who flew in from Philly.  Three times in 1 year! Love it and her! We laugh for hours before we head to Mayo for my transfusions.  The nurses realize that my port can’t be accessed because it’s still too swollen.  So they have to find a vein.  Three pokes later, they bring in an expert…and an ultrasound.  The 4th time, they get a vein.  My arm is now purple.  I now know all the collapsed veins in my arm.  But we are not done yet.  There is a problem with my blood.  I now have an antigen in my blood that makes it hard to match. Did I mention that I am nauseous? 4 hours later we start the transfusion.  We make it through the 1st bag, and half the 2nd bag. My neck starts to itch.  My arm starts to itch.  My tongue starts to swell.  My eye starts to itch.  I tell the nurse I am definitely having a reaction.  IV drugs and a steroid are soon coming my way!  But then I start to throw up.  Blood transfusion officially comes to an end!  But at least I got some blood, right? I get home at 10pm, after over 8 hrs at Mayo.

Friday: I feel better most of the day.  Then my right leg starts to radiate.  It starts to pulse.  No swelling. But it hurts to walk. I don’t say anything for a while.  Our Godson from NY just arrived! But, I call my girl Dana, who’s a nurse.  She says “Call Mayo”.  I call Dr. Michele instead.  She says “Call Mayo”.  I guess I have to call Mayo…and tell Big B. Next thing I know, we are in the ER. The nurses tell me they are having their Holiday Party…and I may have a blood clot.  One leg ultrasound later, good news.  NO clot.  Just lots of body trauma.  Seriously.  Back at home by midnight.

Saturday: My leg still hurts, but not as bad.  I am off to my Adopt a family service project.

Alas, life goes on.  I have chemo Christmas Eve.  Neulasta shots, and possible transfusion the 26th.

So here we are a year later. Still fighting.  Still laughing.  Because really, what is the alternative?  You may hear me screaming if I have to have surgery…again…to fix this port!  I finally looked at it.  It stared back, mocking me.  But she has a name.  It’s a throw back to an 80s R & B group. (Thanks CHH)

Introducing…MTUME

(Pronounced “in-to-me”)

Savor the Journey Part deux

Pink Ink…

“To be clear, I am still very stressed with all the things I have to put in place before the surgery. But as my big sis said, not everything is going to be done by then. (Thanks Michele!) There may be more course changes in the future. That’s ok. I learned this weekend that the best thing to do in the Cancer Lane, is to take pause and,

Savor the journey…

 

I wrote that entry last December as I was preparing for an emergency double mastectomy when I found out that my cancer had grown back.  Ironically, the words still apply today! Who would have guessed that exactly a year later, I would still be in the Cancer Lane, grappling with the idea that I will ALWAYS be fighting this disease. It has been a rough 3 weeks, with emotions all over the place, not to mention the physical challenges. Let’s start there.

Medical update:

I am in the throws of chemo.  It is not “as bad” as the chemo I endured last year.  What does that mean?  It means that I can get out of bed after 36 hours as opposed to 4 days. It means that my hair hasn’t fallen out yet.  I have been walking 2 to 3 miles, a few times a week with my friends. I couldn’t do that before.  On the other hand, my taste buds are shot. My nails and tongue are turning black. I am achy and tired.  I started having nosebleeds, excessive bruising and dizziness.  That led to a platelet transfusion.  My numbers were supposed to be in the 275k range.   Mine were in the 30k range. That’s a problem.  My blood couldn’t clot. Today I am going in for 5 hours for blood transfusions. Lovely.

Did I mention that I now have a port again?

New Port scae

New Port scar

Ugh.

Surgery was better this time around.  My doctor did a great job of not strapping my head down too hard, or just throwing me up on the table. (That’s probably because I said ”please don’t just throw me up on the table!”) But while I am sore, I can at least move my neck.  Last time, it took a few weeks.  I have gotten suggestions to name my port.  So I am thinking on that and will let you know!

At the end of the day, I am mourning the loss of feeling HEALTHY.  That feeling is a fleeting memory.  I feel physically broken and like Frankenstein.  Yes, I am still here, and able to hug Big and Lil B. But it makes me sad when they hesitate before they hug me, for fear they will hurt me.

Emotional update:

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2012 Holiday Party!

This weekend someone told me not to have a “pity party”. So ironic, because I am not that chick.  I recognize that I COULD be, if I wanted.  I think I have earned that moment.  But most of the last few weeks, it has been almost the opposite.  As I make every effort not to rearrange Lil B’s life too much, it almost seems like things are relatively normal.  In fact, I think we were living in a bubble for a few weeks! No one was crying.  We were still doing stuff!  Holiday parties, play dates, hanging with Lizzie and Lucy when they came to visit from Philly! We kept trucking!

But then Lil B wrote a letter to Santa asking for me to be well.  Then Lil B wrote a letter to Santa asking for a certain gift.  She wanted Santa to get it for her because she knew Mommy and Daddy had Mayo bills.  Do you hear my heart breaking?  This emotional cliff was  exacerbated by the fact that I started creating videos for Lil B.  I have done 6 so far.  They have been fun topics like the importance of girlfriends, foreign language and taking care of your hair.  But then I watched Parenthood, where the main character does a “goodbye” video to her kids. She captured everything I wanted, everything I needed to say in 5 minutes.  It was then that my bubble burst.  It was then that I realized I needed to do the same.  But frankly, I haven’t had the emotional stability to do that.  So I cried.  I talked to Michele.  I cried some more.  I thought of Lil B watching those videos and cried.

Sunday, I went to my monthly Coalition of Blacks against Breast Cancer meeting and was fine until I was asked what was my 2013 cancer goal.

“To live through 2013.”

That was all I could muster.

Since then, I have gathered myself once more.  Lil B is looking forward to a “normal” Christmas, and we plan to give it to her. Hopefully, these transfusions will give me energy.  I think it is time for some even BIGGER Big Girl Panties.

Whatever 2013 brings our family, I am going to follow my advice from 2011 and…Savor the Journey.

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