Care Giving at the Basketball Game

Queah

I had two tickets to a Mavericks/Lakers game in Dallas.  Something came up and the friend who was suppose to go couldn’t.  It was one of those things where the flight, hotel and game tickets were paid for and I didn’t want them to go to waste.  My daughter at the time was in the last stages of her illness – even though most days I was in such denial.  I was her caregiver the last two years of her life and we now were getting Hospice care.  When we realized Hospice was necessary  – Queah (Quaya) and I told the nurse under no uncertain terms the ONLY reason we wanted it was because we believed some extra medical care would not only make her comfortable but give her what she needed to make her better. We heard somewhere that it happened for some people – they got Hospice and eventually didn’t need it anymore – and we just knew it would happen that way for us.  The nurse shook her head in agreement and from that day forth we had Hospice.

If you know anything about Hospice, you know they give you a lot stuff – medicine, equipment – we even got our own Chaplin.  Chaplin Charles.  My daughter took to him right away.  Each time he’d visit she’d make him promise to come back.  And each time he did.  About two weeks out from the game in Dallas, I asked Chaplin Charles if I should take Queah.  I had been thinking about it for a while but was not sure because of her illness.  As much as I was in denial there were moments of clarity.  She was very frail, so sick and not at all the person she once was.  She was more like the baby that I nurtured years ago.   I would mash up her food and feed it to her hoping that would make it stay on her stomach.  I would bathe her – when she felt like getting in the tub – otherwise she’d get a sponge bath.  I would  change her soiled clothing and bed sheets till finally diapers were more suitable.   She had so little energy and would fall down a lot so Hospice gave us a walker.  But instead, many times  I would  stand her up, put my arms around her and she’d put her arms around me facing each other.  The sides of our faces would touch or she would lay her head on my shoulder.   I would say “Queah we’re dancing” – as I walked backward and she walked forward holding each other.  Each time I promised myself  I would never forget that feeling.  The feeling of how she felt in my arms.  I still remember.

So when asked that question, Chaplin Charles response was – “Absolutely”.  He told me I would be creating another memory.  So I told Queah – “guess what? – we’re going to a Mavericks game”.  Deep down inside I hoped the thought of getting out bed, out of town, on a plane to another city would make her try harder – would make her want to live longer.  I thought maybe – just maybe – this could somehow motivate her to beat these ugly odds we faced.  She was excited about going and would tell anyone who’d listen that she and mommy were going to Dallas to a basketball game.  Most days she was very much aware and could hold conversations until she tired out.  There was a lady named Laura who’d come each day to look after  her while I was at work.  The two of them went to the drug store and bought lotions, toothpaste, face creams and a bunch of other little things so that Queah could packed our toiletries in plastic baggies to carry on the plane.  Our carry-on toiletries were packed and ready to go long before the trip.  That’s just how excited she was.

By the time the weekend arrived for us to leave her condition had worsened.  There were times she didn’t quite comprehend things so well and she slept more.  At this point she had lost more weight because she couldn’t keep food down. She didn’t want the feeding tube anymore because whatever it put in her stomach it would come right back up.  I was afraid to take her out of state  – but still determined – so I asked the Hospice nurses what to do in case of an emergency.  If she needed a doctor – the hospital – or if the unthinkable happened what was I suppose to  do.  Hospice alerted their counterpart in Dallas that I may be calling and gave me all the necessary contacts should I needed them.  Oh – and they gave me this really cool – somewhat sophisticated – portable oxygen device to take with us because  Queah was getting oxygen at home.

On the day we arrived at the airport an attendant helped me wheel her through security and to the gate.  We took our own wheelchair instead of bothering with theirs.  As I gave another attendant our boarding passes he saw that I had oxygen so he stopped us from boarding.  I don’t know, something about not getting prior approval and wanting me to verbally promise to not use the oxygen under any circumstances while in flight.  I wanted to tell him he was crazy and if my daughter needed oxygen, she was going to get oxygen.  But clearly this was a situation where if I said the wrong thing we were not going to be allowed on the plane.  So I said okay.   Queah never needed oxygen 24/7 anyway – but had she needed it on that flight she was going to get it.  And had anyone tried to stop me –  I guess I would have been arrested once we landed.  Small price to pay.

Queah mostly slept the entire way from the airport to the cab to the hotel.   Then that evening I got her up and ready.  We haggled over what to wear.  I had to dress her and she didn’t like the outfit.  She could barely speak but she knew how to say “no” quite clearly.  Finally, we reached an agreement and I wheeled her to the Mavericks game.  Our hotel was right across the street from the arena which helped.  I kept talking to her to keep her awake and excited as I wheeled her inside.  The game was packed.  There were tons of people and I needed to find the place where you exchange your tickets for special seating in the wheelchair accessible section.   A process that was much easier than I thought.  And then, there we were – in our seats.  She was smiling.  She stayed awake through most of it – the first two quarters.   I got her some food.  Pizza. That’s what she wanted – she shook her head yes when I asked.  She didn’t say much.  She didn’t eat much.   She just smiled – a lot.  And wouldn’t you know it – the cheerleaders came and danced right in front of us for a while.  During all of this excitement – Queah and I ended up on the jumbo-tron.  Yes – there we were – I said “wave!”.  She waved – so did I.  By half -time she had about as much excitement as she could take so we went back to the hotel.  I couldn’t sleep that night.  I was so afraid I was going to lose her.  I kept getting up through the night to give her pain meds and all the other pills she had to take.  She was always in pain but not this night.  She wasn’t talking.  She was just sleeping.  And I kept watching to make sure she was breathing.

The next day I got her up and she said- “when are we going to game?”  Good thing I had the pictures to show her.

It was not an easy flight home.  Well, one easy thing was the person who took our boarding passes saw the portable oxygen.  As I was about to explain she politely cut me off in mid-sentence and said – “don’t worry it’s not a problem”.  And yes, this time we used it on the flight.  I don’t know if she needed it but I was scared .  The moment the wheels on the plane touched the ground  I called Hospice and pleaded that a nurse meet us at home the minute we arrive.  Queah was unable to get out of her seat by herself and could barely stand let alone walk – so I got in front of her and tried to lift her.  As small as she was she felt heavy from this position.  I said, “Queah you gotta help me”.  She softly said “I’m trying”.  Those two words – I’m trying – gave me enough energy to lift her.   I got her out of the seat – once again as though we were dancing – and placed her in a wheelchair small enough to fit in the isle.  The attendants buckled her in tightly. People were watching us as I tried to maintain my daughter’s dignity.  I always tried – she expected that from me.  My goal now was to get her home – in her bed – where it was peaceful – where she belonged.

When we got home, the nurse and the Hospice doctor were there.   They examined her and then the doctor sat me down on the couch in the living room and said, “Well she’s young”.  There was something about hearing the words, “she’s young” that for a split second gave me hope.  I expected the next words to be …and she’s a fighter and there’s a chance she’ll make it.  But the doctor followed  up with –  normally she’d be gone tonight, but because of her age she’s probably got about a week.  And at that point denial came back. Forget what had just happened in Dallas and on the flight – I told that doctor she was wrong and that my daughter was going to make it through this.  I believed she could still make it.

By mid-week it seemed I was right.  She had a burst of energy.

Talkative.

Eating.

And awake.

My daughter died early that Saturday.  One week after the basketball game.

I find it’s the longing that hurts worse.  Missing her. Wishing she’d come back.  I might cry a little less – but I hurt deeper – especially remembering things like care giving at the basketball game.  I thank Chaplin Charles for encouraging me to take her to that game.  It did create another memory – and right now I’ll take all I can get.  As hard as it is to be a caregiver I’m blessed I had the opportunity.  It was an honor.

Lashes In My Tears

I wear fake eyelashes. Not the kind you buy in the drug store or department store. Not the ones you stick on your lids with glue. Not those. I wear the ones where each individual fake lash is carefully glued to each individual real lash and they stay on until the real lash sheds. Sounds painstakingly tedious – but it’s actually kind of cool. I like how they look. A lady named Diane does them – or as it’s called – “fills them” every two weeks.

I was there the other day. I lay on a table on my back. Diane wears these glasses that magnify my lashes so she can see where to glue the fake ones to the real ones. She sits at the top of the table near my head like she’s going to give me a facial but instead she sticks little patches underneath my eyes, tapes up my lids and tells me to keep my eyes closed.

Sometimes we talk. Sometimes I fall asleep. But this time I just cried. We were talking about something – I don’t remember what. I remember saying, I—miss–my–daughter – and the flood gates opened.

I have discovered, after grieving for almost two years it will never be over. There are people who say – and I accept – that I should not want to – quote -“get over it”. But I will tell you there are times when things are going just fine when sorrow hits me out of the blue and the feeling is overwhelming. I can be driving in my car. I might hear a certain song. There could be a familiar scent in the air. The leaves could be blowing in the wind – or as I discovered – I could be getting my lashes filled when I am struck with the most intensified grief.

Such sadness.

Such pain.

The hurt is indescribable because it cuts so deep – didn’t feel this way in the beginning. But during those moments of tears I feel like a part of me is dying. And in that moment, there are no words – no actions – no thoughts than can make that pain dissolve.

I feel it.

I live it.

I get through it.

I have come to understand something I was told early on. Not so long ago I interviewed a grief expert who said there are many people who struggle with grief daily. You might know some of them. They go to work – to church – they are around family and friends and appear to be fine. In some ways they appear to be “over it”. But truth is they are unable to live a truly satisfying and meaningful life. Some of them feel guilt because their loved one is dead and they’re still alive. Maybe they think they could have done something to change fate. It could be any number of issues – but for them moving forward would be abandoning their loved one’s memory. It’s as though being fulfilled with life – and all the joys it can bring – would be an insult to the person who is not here. It’s a game of tug of war. Perhaps the person who loses is the person who’s still alive.

Nearly two years of grieving is by far not a life-time. I have many more tears to shed. But I believe in my heart my daughter wants her mother to feel complete. She wants me to live a fulfilling and happy life. And knowing her – as I do – she would be mad if I didn’t try. So as I attempt to move forward I remind myself that everything she left here on this earth – memories mostly – move forward along with me.

As I laid there on that table with Diane carefully attaching each fake lash to each real one – the tears rolled from the corners of my eyes, streamed down my face and puddled in my ears. Each tear – over and over and faster and faster. I couldn’t stop. The problem with attaching lashes is the glue doesn’t take well to water in the first 24 hours. So Diane made sure to avoid getting any lashes in my tears.

She finished.

I sat up on the side of the table trying to carefully open my eyes. I’m always afraid to open them too quickly. It’s best if you let the glue dry so your eyes don’t feel fumes that might be lingering. I opened them slowly and they felt just fine. The tears were gone. I looked at Diane apologetically – feeling a little guilty for putting her through all those tears. She didn’t seem to mind a bit.

I left there and went on with my day. As I recall – it was a really good day. My daughter would have been happy about that.



Street Cred (Credibility)

Somewhere along the line I think I told you my daughter was a writer.  During the two years that I was her caregiver – probably during that first year – she wanted to do an “open mic” presentation where people pick different topics and talk about them to audience members.  While I wasn’t there to watch her deliver her message, she told me she was going to talk about *Street Cred*.  At the time I had no idea what she was talking about until she said, “mom, cred means credibility”.  I found her speech and wanted to share it with you.  When she presented these words in front of the audience, she weighed all of maybe 80 pounds – her normal weight was about 120.  She was very sick – but very determined. 


So one night I was out grooving to some really good music at a club with my girl Zoe.  We sat down to take a break and these guys come over to us wanting to trade drinks for some conversation.  So we took them up on the deal.  As the guys turned away to buy the drinks – I blurted out “so how old are you?’ Confused about what lie they were going to tell, one said 17 the other said 21.  That’s when me and my girl looked at each other saying to ourselves “oh no!”.  The little guys came back and we completed the deal – one drink for a quick moment of conversation.

Honestly, I don’t remember what we talked about – it’s been so long ago – but I do remember one of the guys told me he thought I was pretty.  As I thanked him, I said “can you believe I’m battling cancer?”.  There was a pause, and that’s when he said it.  Very proud and self assured he said to me, “Cancer ain’t nothing. I’ve been shot before”.  And just like that the conversation was over.  But one things for sure – he’s got some real “street cred”.

So one night I’m at home and I began to wonder if cancer can give you street cred – you know, like a bullet can?  Okay let’s think about it.  A cancer tumor can erupt inside your body and do major damage just like a bullet from a 12 gauge or sawed off shot gun.  Maybe not so much like close range but certainly it can happen like a shot in the dark from an unknown assailant.  My grandmother would always say – when she wanted to protected from unexpected harm – “bullets have no names on them”.  Well, neither does cancer.  A bullet can rip apart an organ causing you internal damage, bleeding and many other complications.  Just like cancer.  In fact, a bullet can flat out kill you – just like cancer.  In my case – cancer even asks the question – “do you want to die a quick death or a slow one”.  Cancer and bullets.  Not that different in my opinion.

So I ask this question… is a bullet deadlier than cancer?  Not many people survive a bullet. But if they do survive, some live to talk, rap and rhyme about it.  Those are the people getting the street cred.  Surviving a bullet can make you feel invincible like Lil’ Wayne.  Gangsta like 50-Cent.  Immortal like 2 Pac – and yes proud like the little guy I met at the club.

I first waged war against the “Big C” back in 2005.  That was the first time so allow me to brag a little.  I had a tumor that was six inches long in my abdomen that appeared out of no where.  Yes, it was a shot in the dark from an unknown assailant.  I don’t know if ya’ll paying attention -but have you look at me?  I’m tiny.  How the hell was a six inch tumor fitting inside of here?  Like the saying goes “it was time to ride or die”.  So like a gangsta who’s just been shot,  I drove myself to the hospital in piercing pain from my wound and demanded they do something about this.  They gave me morphine to kill the pain – and then emergency surgery took that bullet – I mean tumor – right out.    Then I spent six months on chemotherapy fighting – yes, still fighting for my life.

By the next year,  I had beaten cancer just like an outlaw and lived to talk, rap and rhyme all about it -kind of  like I’m doing right now.  You should have seen me back then – I was deep into the game.  I listened to 2 Pac every night to get my motivation – my grove.  I got real gangsta with my battle.  Instead of me against the world – it was me against cancer.  Cancer couldn’t see me because I kept dodging it.  I put it in a choke-hold.  I may not have been a bad boy killin – but I was a cancer killin girl!  A rebel. So where was my street cred then?  No one ever gave it to me.  Shocker.

Three years later – there I was again – back in the fight.  I was forced to wage my war again – yes, again my block was hot.  The cancer came back to finish the job it couldn’t do the first time around.  And this time it came back with a vengeance.  Cancer came to me.  It was angry – like I had murdered its baby brother and it was back to settle the score.  This time I was hit by a 12 gauge.  Bullet filled with cancer instead of pieces of metal spread out everywhere in my belly.  The bullet exploded in abdomen.  My stomach had big tumors, little tumors and hundreds of microscopic tumors in the lining of my organs and all throughout my belly.  Doctors gave me very little time to live.  They said these tumors had to be removed now – otherwise the fragments were going to kill me.  I was going to die a slow painful death.

A team of surgeons sliced my belly open and carefully removed each and every visible tumor.  To me it was like having bullet fragments removed bit by bit.  It took them nine hours to get the job done.

Today I’m on Chemotherapy – indefinitely – I keep fighting this war – it’s like a battle on the streets everyday.  My personal street named “Queah”.

Once it’s over – how ever it ends – will I have finally earned my street cred?







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