Sunday, September 23, 2012

Switching Chemotherapies, with a side of heartbreak.

Daddy had been on a chemotherapy called Torisel. Torisel was an infusion, so it was administered once every week at the hospital oncology center. The thing about chemo is how expensive they are, there's a process to being able to receive it each week. You get there around 8:30am, sign in, wait. You then get called to get blood drawn and vitals taken. ALL THE NURSES SUCK AT DRAWING BLOOD. Daddy gets stuck a minimum of four times each time we go. And one time the lab took so long to process his blood that it hemolyzed (clotted) and he had to be stuck some more. Once your lab work is done and creatinine levels are okay'd by the doctor, the pharmacist can then begin to mix your specific cocktail of Torisel. This process takes almost an hour each time because of how busy the chemo pharmacist is at any given point in the day. Then, you get called back to the infusion center and get hooked up to a line of Benadryl (prevents any itchiness at the infusion site) which takes about 20 minutes and then you are hooked up to your Torisel infusion which takes about an hour to finish. By this point, Dad was usually cold and uncomfortable and tired. But we still had to make it into the car, and into the house. Always an ordeal.

After Daddy's second month being on Torisel, he had a set of scans done to see how it was working. We got a call that night, it stopped working, more tumors were popping up and the ones he had already were growing. We were all so discouraged... We couldn't believe that such a strong drug with all of its side effects wasn't working. Daddy fell back into a two week long depression... I fell with him. But we did have a new chemo that a specialty pharmacy was to mail us, Sutent. Sutent is a pill form, taken for 4 week and then you are off of it for 2 weeks. The best part was that Dad could just take the pill on his own, no more weekly trips to the hospital. We anxiously awaited the Sutent, Daddy did not like how long it took our insurance to process the order because he wanted to start it right then and there. The thought of the cancer just growing inside of him with nothing there to stop it made him so angry. We both have this in common, to feel helpless is the worst feeling in the entire world.

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Saturday, September 15, 2012

What it Feels Like

To look at your Daddy, a man who used to stand almost 7 feet tall, scare all of your friends until they realized his only weapon is sarcasm, who used to read me Billy Goats Gruff time after time after time just because it was my favorite, who used to sit in the stands of every game I ever played in, who used to be so physically strong and happy and level headed...

And see him today... Hunched over, bed bathed since December because he cannot stand long enough to shower, body half metal and riddled with cancer, frail, weak, depressed, mouth full of chemo sores that impede his ability to chew, the sounds of agony when he has to move... Even cough... A sneeze brings tears...

(Daddy with me 1 year before cancer)

To see that, every day, does something to you. It angers you, it frightens you, it saddens you in a way that cannot be properly described with words, but it lights a fire in you. A fire of determination like no other. A fire that allows you to continue on with your life somehow. You're able to be happy, just to help him bathe, fix him lunch after you clean up his breakfast, to just sit and read with him, to watch Netflix or hours day after day just to have something to do, even just to watch him sleep... You're happy just to be with him, and that's enough.

(Daddy with me 5 months after cancer, using the car to help him stand long enough to take the picture)

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Tuesday, September 11, 2012

I wish that all the different cancers were a part of a gang, so that I could hunt them down one by one.

The title sounds ridiculous, violent and scary even... But it's true. The thing I hate more than anything else in this world, is kidney cancer. Yet there are countless other cancers out there plaguing other peoples' loved ones too. It's hard to have the target of your hatred be non tangible, to have to envision yourself in your dreams conquering cancer cell by cancer cell. When what I really want is to have my hands around the throat of kidney cancer, to be able to watch the life drain from its face, to torture it, to make it feel all the pain that it has made my Daddy feel... My Momma feel... My family feel... Me feel.

Yes, I'm angry and I might even be a little mental. I think I have every right to be. I think I have every right to want to hunt down kidney cancer and kill it for myself. Then, hunt down every other cancer out there... The ones that have plagued my family... Ovarian, Prostate, Lung, Blood, Bone, Breast... I want them all, I want them all to suffer. I want to be able to kill them all and save all of my family members and anyone else they have attacked. Most of all, I want to save my Daddy. Kidney cancer, I am going to find you, I will get to you before you have a chance to my Daddy. You can't kill him if I've already killed you.

I wish cancer, got cancer, and died.

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Tuesday, September 4, 2012

The First Day As A Nurse

I never wanted to be a nurse, my Momma's a nurse. But here I am, awaking to Daddy needing my assistance. I'm officially his nurse. Filling weekly pill bottles, washing him up, making him breakfast and lunch, and being bedside as much as I can. Watching TV and playing board games on his lap, unless it's a good day and he can sit up in the kitchen. I try to keep his meals a mixed variety, while keeping it soft enough for his chemo sore ridden mouth to handle. I remember trying really hard to pick shows we could watch that don't have to deal with sickness, cancer, or death. I had no idea how hard that was actually to do. Daddy seemed in good spirits though, he slept half the day away, which allowed me to do some homework. If I couldn't focus on homework anymore, I'd do some housework to lessen my mother's stressors.

When he woke from his nap, I made him a snack of a protein smoothie, raspberry his favorite. We watched some Bones and some Saved by the Bell, then it was time for me to go to my apartment and sleep in my own bed. I did not want to leave. With every cell in my body, I wanted to stay with him and keep him distracted forever. I never wanted him to dwell on his cancer, never wanted him to get as depressed as he was in that Hell hole of a nursing home. But I had to leave, I fluffed his pillow and made sure he had a urinal and a drink and another snack just in case he needed it before Momma got home to make him dinner. Gave him a kiss on his bald spot, told him I loved him and left. I never turn around and wave, because by the time my feet hit the sidewalk, my face is covered in tears and my eyes are red. I can't let him see that, I have to be strong for him. I take the long way home so that I don't have to pay a $6 toll and I had to pull over a few times because my crying was becoming an anxiety attack, but I made it home... To Ken, my rock. I text Daddy that I love him, "smiles!!... Love you too!"

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Monday, September 3, 2012

That First Night

I finished up the shepherds pie, Daddy inhaled it, his first real food in just over a month. I'm elated, I can see Momma is worrisome, but I am just happy in this moment. My father has retaken his seat at the head of our dinner table, comforting in some way. My brother is missing from this picture, he will be for some time. This fact breaks my heart, to know that he will have such regrets when this tragic part of our lives comes to an even more tragic end. However, I also know that there is nothing I can do to change it, or him. This fact does mean that even more responsibility will fall on my shoulders, Ken helps so much where my brother fails in his family duties, but there are some shortfalls that really only I can attempt to fix. I decide to let myself to continue to enjoy Daddy's first dinner home, rather than dwelling on how much I resent my own little brother.

I forced ice cream into Daddy, he was really too full for it. He was in too much pain to sit up for much longer with us, so I wheeled him to his bedside in the next room. I lifted his legs into bed and tucked him tightly into the sheets and blankets. Then, I cleared the seat next to him and sat down. Before Ken or my Mom could clear the dinner table, Daddy asked me to spend the night in the living room with him. I'd never say no to this request, I knew that me being there in the room made him comfortable enough to really fall asleep. I told Ken, he stayed a while and then went home. Momma eventually went upstairs to sleep, she still only sleeps on her side of the bed, never touches the parts of the bed where Daddy belongs... I stayed up until I knew Daddy was really asleep, and I slipped his CPAP machine mask onto his face. Snuggled up with my "Yogi DaBerra" Yankees Build-A-Bear on the couch and made my nightly bargain with God before I closed my eyes. "Keep him alive, kill his cancer, and I will do all the right I can do in this world, Amen."

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Our New Life

It was finally time to bring Daddy home again. We had it all planned out with our insurance company, but just our luck... It was change of shift at the nursing home--- which meant we had to chase down the charge nurse and the doctors wouldn't stand still long enough to sign any of the discharge paper work. After waiting over an hour for these idiots to sign the papers they needed to, we decided to just pack everything up and put it into the car and maybe after all of that they'd be done when we were done...

No such luck, Momma decided no, we would not wait for them, because if it became dinner time we would have to pay out of pocket for another day at the nursing home. So we got Daddy into the wheel chair and made our way down the hall to the lobby. The charge nurse saw us and came running like we were making a prison break. Momma just told her, "we refuse to wait until your convenience, his health already has suffered enough from you people." The look on the charge nurse's face was priceless, and I pulled around our car to make it easier for Daddy to get in. The doctor came running with the discharge papers, Momma signed them and when she turned around he was gone, so she left them on the smokers bench out front, no way we were stepping a foot back into that Hell hole.

We got Daddy in the car and began to drive off... My heart started to feel so much better, no longer gripped with anger. I realized Daddy was silently crying, so I reached from the backseat to hold his hand... The whole drive home. We got off our hometown exit and Daddy noticed all the new stores and restaurants since the last time he'd been on that side of town. I could tell it really made him feel uneasy to notice how long he'd been in and out of the hospital and nursing home. I just tightened my grip on his hand and told him, " Daddy, I promise that you will never go back to that nursing home, I won't allow it, no matter what." he tightens his half of the grip and his tears seem to slow, but not stop.

We pull into our neighborhood, it had just gotten dark. I think Daddy liked that because he wouldn't feel like such a spectacle to our neighbors if it's dark out. When we get to the house I go inside and put his wheelchair just inside the door, grab his walker, and put his crutch at the bottom of the stoop. I open his car door and hold the door steady so he can use it to pull himself up. I like to walk by his side while he uses the walker, instead of behind him. So it feels like we are just walking, not that I'm bracing myself to lay my body out if he were to go falling. We go up the first stair of our walkway, I have to be behind him to steady his hips. Then I go back to his side as we walk to the stoop. He grabs the railing with his right hand, I put his walker at the top of the stoop and give him his crutch that helps him up the stairs. The first stair is very deep, I have to take him by his waistband and push his hips up because he is just not strong enough to pull his whole body weight up with just his arms. We make it through the front door and he almost falls into his wheelchair. I wiped the tears from his face so that Momma wouldn't see he had been crying. Momma comes in the house just after, with some of Daddy's belongings in bags from the nursing home. I just wheel Daddy into the kitchen and put the wheelchair up the table. I start making shepherds pie, Daddy's favorite, and that's it... My Daddy is home, I never want him gone again, ever.

Once the shepherds pie is in the oven, I kiss Daddy on his bald spot on the top of his head, and hug him as tight as I can without hurting him. This is our new life, Daddy's sick, making my family sick in turn, but I knew we would be alright somehow... Our New Life.

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