Birthday Wishes

A week ago I was thinking about what I wanted for my birthday. I love makeup, clothes, shoes, makeup, and clothes. (Ha!) But the only thing I wanted was for my Dad to be cured. I thought about blowing out the candles and making that wish. Then I thought to myself that a few short weeks after my birthday I would actually have my birthday wish come true! How crazy is that? Most people make wishes but rarely do they ever come true, but mine actually would. I just had to be patient for just a little while and I'd get what I asked for. 

Two days before my birthday Mom and Dad Skyped me. We Skype all the time but usually it's so they can see Dexter and we can talk in between his antics about how they're doing. That night Dexter was already asleep so they asked how work was. While I was talking to them I could tell they hadn't called with any intention of wanting to see Dexter. They had something to tell me. As I spoke I left out details of how bad my week was because I wanted to get to whatever they needed to tell me about. I also had some long pauses because I wasn't really sure if I was ready to hear what they were going to say. Finally, it came out. Mom said that they were told it's time to switch to plan B. I knew what that meant but I still needed to hear it. Then Mom told me the trial didn't work. Dad's lesions were growing in size as opposed to shrinking like they were supposed to. Dad had been having pain in his arm for a while but we were all just hoping that the pain was the measles fighting the cancer and killing it. In reality it was just the cancer growing and giving us all the middle finger. 

We're not really sure what Plan B is right now. Not that it really matters. I think that if the doctor had some elaborate plan that he was confident in we'd still be pretty skeptical. I mean, this was supposed to be it. This was supposed to be the answer to our prayers. It was supposed to be the beginning of my Dad's new life post cancer. But it's not. Our prayers weren't answered. Our hopes were crushed and our hearts deflated again. Do we even dare to inflate them back up? It's not that we don't believe that a miracle can happen or that God still has our family in his hands, it's just that we need to take a break and let Him carry us for a little while. We're so broken and defeated. I don't think any of us were ready for this. We had put so much hope and so much faith into this trial that I think we don't have any for what's next. We literally gave it all counting on the fact that we wouldn't have to rely on any of it for a while. We thought this was going to be the end. 

So, here it is, my birthday. As I ate my gelato  (which I opted for over cake) I decided not to make a wish. I decided to follow the verse that my Dad has been posting lately and let God fight for us and for Dad. Because right now I think all any of us wants is to be still and let Him do the fighting.

"I will fight for you; you need only be still." 

Exodus 14:14

Who Cares What the Title Is, Just Read It.

Today is the beginning of our answered prayers. It is the beginning of the end. Today, Dad starts the measles trial. He has been given a dose of chemo already and will be hospitalized tonight so that he can receive his injection tomorrow and recover from it. It's a strange feeling. There's so many emotions that come with it. There's obviously an excitement in the air. Family messages are full of hope and faith. Friends and acquaintances and even strangers are messaging us sending their prayers and positive vibes. It's like my Dad is on the verge of having a real life miracle happen and everyone knows it. Everyone believes it. Everyone will  be a part of it. It is almost too much to handle. It's almost like a high, with the peak being the day we finally receive the news we've been waiting for.

Then there's a weird feeling of incomprehensiveness. That's not even a word but that's what it feel like. Maybe the correct word is unconceivability? I don't think that's right either. Oddly enough, the fact that I can't think of the word perfectly speaks to what I'm trying to say. Knowing that my Dad could be cured is ludicrous. Is that even possible? Honestly, is it? Is that something that happens? It's crazy talk!! Cured. Like, really cured. It's hard to think about because one of my fears has been finding out my Dad has gone into remission a second time. That sounds horrible I know, but I have good reason for it. With MM your first remission is generally your longest, then they get shorter and shorter. Dad's remission only lasted a few short months. So, to me, hearing that he went into remission for a second time would be like hearing that he maybe had one more month cancer free and then that was it. There would be nothing worth fighting for because there wouldn't be any more remissions after that. So, in a way, finding out that Dad is in remission would be like hearing that he only had a few months left to live. So, for us to skip remission and go to a cure is almost unfathomable. It takes away one of my greatest fears and replaces it with something... life saving. 

There is this little thought in the back of my mind saying that I shouldn't get excited about this because what if it doesn't work? I mean, there's not much left to do if this doesn't yield the results we've been hoping for. That tiny little part eats at me. I don't want to speak about the negative thoughts much because I want to stay hopeful in the thought that my Father will be cured. I want to stand strong on that and see this journey through the eyes of  a child that has yet to be jaded by this world and all the heartache in it. I want to have the faith of a child, and dance like one when we receive the news that he is Cancer free.

Lastly, there is this weird sense of finality to all of this. What is life like without cancer? For a while we talked about having a "normal" life again but this has become normal. It's not the kind of normal that I would wish upon any person, but it's what our family has grown accustomed to in some ways. I'm not saying I'll miss it. But it has brought us together as a family and opened several doors that without cancer, would never have been opened. It has allowed us to speak into the lives of others. To create bonds. To celebrate the little things more. Cancer eats away at the body, but with the right mindset, it almost frees the soul. But where do we go from here? I almost expect to feel in a daze for the first part of it, almost like the day we found out Dad was sick. Will Dad still have to go back to Little Rock for follow ups? What about all the relationships they have built with people there? There are so many unanswered questions, but I guess we will all rejoice and see what life has in store for us. I mean, if we had so many amazing things happen to us in a time of cancer, just think about the possibilities of things to come without it:

Conversations With God

Dear Heavenly Father,
I'm coming to you to ask for a miracle for my Dad. Right now there are two big events that lie ahead of us. I'm asking you to make sure the first one goes we'll so that the second one is even possible. You know Dad had testing on Monday, you and I have been talking about it a lot. I need you to make sure that his results are good enough to get him accepted into the trial. You know I like to be upfront and honest with you so I'm not asking you for that, I'm telling you to do it. That might be disrespectful but my heart is broken and I need you to come through and fix it by fixing my Dad. I know you can appreciate me being real with you. You know how I'm really feeling so there's no reason to pretend in our conversations that I'm being polite and asking. Even if his tests didn't go we'll or his body wasn't in the shape it needed to be on Monday I need you to do a divine intervention and change the results. This needs to happen. Oh, and there's more. Not only do I need you to get him into the trial, I need you to make it be successful. I need you to cure him of cancer. Every drop of it gone, never to return. Again, I'm not asking you. I know you hold the whole world in your hand and that you are the Alpha and the Omega. You are the redeemer and the healer. I know that you can see what is ahead of us and what the outcome of this is for my Dad. I trust you and know that if it's not your plan to heal my Dad right now that you have a reason. I get that. But, you also gave me emotions. Love, anger, sadness, angst, hope. So I think it's only fair that despite my knowledge of what you're capable of, I still am not ok with the thought that you might not heal my Dad. I'm coming to you now to tell you I need you to heal him. If you don't do it I won't understand why. I don't see the future like you do and I don't think that I can take any more bad news. You have shown me a lot of things in the past few days, and you've told me that I need to have hope. Until a few days ago I have been very real with myself and with how cancer works. I have purposely calloused myself to not get my hopes up. But you have shown me verses on facebook, and t shirts. You even brought up hope through a small clip in Breaking Bad the other night. You have given me doubts and being real and made me start believing that it is ok to hope again. So, I'm going to need you to do your part. To show me why you wanted me to hope again. You're the one who made me open my heart and make it vulnerable again and I'm hoping that that means you're preparing it to be able to rejoice. And that it will be ready to believe the good news when I get the call that my Dad is healed. I'm not telling you to do this because I don't think that you will, I'm telling you because I know that you can.
Amen.

Anticipation vs Reality

Every time I see my Dad he looks more like a skeleton and less like my Dad. I can't help but to notice how small his legs are. They're frail and bony. They used to deliver roundhouse kicks as he instructed karate class and now they barely hold him as he walks. His tattoo he got done just a few short years ago used to stretch across his muscular arms. Now it hangs on his limp skin that has no muscle or fat to cling to. His clothes swallow him up. The shirts he wears are loose garments draped over his body. His pants hang from his waist and I imagine a belt underneath that has added holes in it to make it tighter than it was meant to go and a cinched waistline bunched up beneath it. There's this darkly ironic detail I've noticed. The chemo has destroyed his body, but his hair is coming back. I know we can't pick and choose what side effects the chemo has but it's wreaked havoc on his weight and let his hair continue to grow in, and it pisses me off. He didn't have hair before because he always kept his head and face shaved, now there's peach fuzz everywhere and no fat anywhere. If that's cancer or life's way of being funny, I'm not amused

He used to be a big foodie. He still loves new restaurants and food trucks, but he rarely eats anymore and when he does he fills up on a few bites and then struggles to keep it down. The lack of calories he consumes has left him weak, and exhausted. It's a challenge to get from the couch to the front door and back. Small tasks like letting our car Fred out, cooking a TV dinner, and chasing my 1 year old Dexter around are doable, but they push him to his limits. Sometimes they push him past them. It's tough to see him on the couch every time I go to their house because I know he's probably only gotten up to go to the bathroom. A few years ago he was training for BJJ/MMA fighting and now....

In the Lupe Fiasco song  "Mission" that I reference a lot, there's a man at the intro who talks about his battle with cancer and what he went through to get into remission. There's a line from the song that he said before that broke my heart but now it haunts me because now I don't just understand what he saying, I see it happening right in front of me. He says, "I literally died to stay alive." Before my heart went out to this brother in the dysfunctional family that cancer creates, but now I weep for my Dad. Even though the man said he was LITERALLY dying to stay alive I didn't get what he was saying in it's full capacity. 

The strange thing about cancer, or one of them, is that you know what to expect, but everything is still such a surprise when it happens. There's a big difference between anticipating and experiencing. I knew my Dad would get sick. I've seen other people get sick, I've watched documentaries, I've seen movies and TV shows about people with cancer and what it does to them, but cheese and rice... seeing it happen to family, that's a whole different thing. 

Unwelcome Anniversaries

It was my senior year of high school. Softball season. My Grandma had just had a heart attack and was going into surgery. I didn't think much of it. After all, she had been diagnosed with brain cancer and given 6 months to live. And at the time that had been 10 years ago. She had beat all odds and survived. The fact that she was given a 99% success rate for this surgery made me feel like this wasn't a big deal, not for her anyways. I mean, even if she was given a 50/50 there might have been some thoughts, but not a lot of worry. She had already beat death once and laughed in it's face for 91/2 years past the "expiration date" it had given her. 1% chance of death and 99% chance she'd be showing up back at our house sometime at 5am after a 2 hour drive from Pratt. I never got any more wake up calls. She never made it out of surgery that day.

Fast forward to my Freshman year of college. Spring again. My Grandpa and I were closer than ever. The loss of my Grandma had been hard on him but we went out on dates every single week and I think it really helped keep his mind off things. It was Good Friday and my cousin Jessica called me, told me that my Grandpa had a heart attack. It was mind blowing, earth shattering, life altering de ja vu. I left that day to go see him in Wichita. For the next few days we all camped out at the cardiac center there. We went in to visit him and talk to him as he waited to have his surgery. Same odds. Same. F**king. Odds. I remember watching my Dad as he relived this situation for the second time. One parent gone on a 1% chance, and the other awaiting the same surgery with the same chance, almost exactly a year later. I had never seen irony be so cruel.  I tried to imagine all the things going through his mind. He had to make the same connections I did. But I never asked to find out.
 

I watched an episode of Parenthood the other day and the family was all waiting for Zeek's heart surgery results in the waiting room. Another person in the waiting room got called into a different room. Someone had mentioned that when that happens it means they're giving you bad news. They give you good news in the main waiting room and bad news in a separate room so you can grieve.

That Easter Sunday morning we got asked to go into the separate waiting room.
 

Now we flash forward again, or backwards if you will, to June 19th, 2013. Exactly 2 years ago from today. At 10pm my alarm went off for work. I really enjoy my sleep so I usually only give myself time to throw some clothes on, brush my teeth and run out the door. That night was no different. By the time I got to work it was 10:45 and I noticed my Mom had sent me a message saying I needed to call her. I decided it was too late and that I'd call the next morning when I got off work. The next morning I received a call from my uncle and found out that my Dad had been put in the hospital the day before. His kidneys were failing and they were only at, I believe, 4% usage. It was horrible news, I can't honestly say I knew how bad of a thing that was. I mean, I know having your kidneys fail isn't a good thing, but was it a fixable thing, could it be turned around, is it a lifetime issue or just a quick stay in the hospital and everything will be back to normal? I had no idea, it just made me panic. I felt so guilty for not calling my Mom back. I should have called her and went to see her and stay with her that night. The next 3 days I spent every free minute I had at the hospital. The doctors ran every test they could think of to try and find out what was going on. At the end of those three days my Mom and Dad waited until all 3 of us kids were together and told us that Dad had cancer. He had gone from kidney problems to Cancer. From dialysis to chemo. From this sucks to WHAT...???

Finally, the present. The past few days I've been in this weird mood. It's not so bad until I'm alone and then it really hits me. You see,  I've known this big date in our family's life was coming up and it's really left me with this unsettling feeling. It's not the kind of anniversary you want to celebrate or remember, but it looms anyways. And to add to it my Mom had texted me one day saying that Dad's kidney's had been bothering him. That one little message brought back so many feelings. So many fears, insecurities, falsehoods. It made me remember thinking that something was wrong, but not "cancer kind of wrong," only to find out, it was in fact that exact kind of wrong. It made me feel very vulnerable and worrisome. I had always wondered how it felt to watch a horrific situation regarding your parents unfold in front of you twice like my Dad had to and now I couldn't help but feel like it was happening to me. I don't know what I expected to hear that could be so bad. Not to sound crass but he's not in remission so it's not like he was going to end up in the hospital and find out the cancer came back. It's already back. I just panicked.  It didn't make sense and I shouldn't have let it bother me but it really made me relive a lot of those old emotions. I've already heard my parents tell me once that Dad had cancer, and then tell me another time that it was back. I never wanted to hear those words or feel that way again. Twice was enough. Hell, once was enough. I suppose it's just a part of this journey, though. Every year around this time my heart will be heavy and mind will start to remember those feelings, I just hope my Dad's kidneys decide not to bother him this time of year ever again.

My hero. My mentor. My Mom.

When I think back to when my Dad first got sick there is an image that always pops in my head. It's a simple picture. But it resonates within me as a profound symbol of so many things. Love. Friendship. Strength. Hope. Togetherness. It rocked my soul. It well...It made me view life a little differently. I wish I could put into words all the things I felt. I watched the moment unfold before my eyes and I just had to capture it. I knew then that it was a moment that would define the rest of my Dad's journey. I'll just let you see it and let you decide what you get from it. 

They say behind every great man is a great woman but this picture shows why my Mom is the exception. She's never been the woman behind my Dad, she's always been beside him. Because of that my Mom is my hero.

 A lot of people have a misconception about who suffers from cancer. To them, it's the patient, but it's also the one who is doing what my Mom is doing, standing beside the patient. Since the day my Dad was put into the hospital my Mom has been a rock. There have been times when they had to give us bad news but my Mom always stayed positive. She would always say that God was in control and He would take care of everything. And she meant it. I don't know how she does it. I have doubted God so many times through this, been angry at Him. Yelled at Him, even cursed. But never her. She's always praising Him, giving Him thanks for the things they do have. My Mom is incredible.
I think of how common Cancer is these days and it scares me to think of my husband getting it. It breaks me down. These days it seems more people do have it then don't, and it scares the hell out of me. Just thinking about it has me in tears. But my mom lives my biggest fear. And she does it with such strength and grace.
She might not be superhuman but she is as close as it gets. We've had some pretty deep talks, talks where she is worried, where she cries, and where I don't know what to say or how to console her, but she's not asking for that. She's just getting her feelings out, which is true strength.

  There have been times where I have asked her how she's doing and she says things like, "You're Dad is having a really good day today." or "We've had a rough day, but we'll get through it." When I ask how she is, she tells me how he is. She always puts herself second. She is vigilant in her cares for my Dad, the love of her life. Even in the middle of all of her duties as a wife, a Mother, a Grandmother, and a caregiver she finds time to fill this world with her love. She's taken time to stop and make sure a local homeless man had ways to get food and something to drink. She updates everyone on her and my Dad's adventures and heartaches. A week or two ago a man came to our house to see my Dad and was speaking of the Melanoma he has and all the different radiation treatments he's had. He told us he's not complaining though, because what my Dad is going through is far worse. Instead of leaving it at what he said my mom said, "No, that's your journey. Your battles are just as tough and just as important. We all have things we fight and they are just as important as the next person's." I loved hearing her say that. I loved knowing that woman with such wisdom was my mother. She doesn't get caught up in the "pity me" mindset. And she never belittles anyone's problems they are facing. Instead she lifts them up, with words and with prayer. 

My Mother is a warrior. She is the woman spoken about in Proverbs 31. She's the woman who spends her days reminding Dad to drink his water. To not go out without his mask when he's neutrapenic and to make sure he doesnt overdo it when he's weak. To others it might sound like she nags at him about all the rules he has to follow. To me, she is being firm in her efforts to keep my Dad alive. And I will forever be thankful that she is so persistent on her "nagging." 

My mother does so many things just to help my Dad get by day to day that no one sees. She does things that don't make sense to other people, but to her they are things that are necessary for my Dad to have a good day. And she might not think that anyone sees them, but I do, Mom. I do. 

I Dont Know How to Answer Your Question

I have a love/hate relationship with a question that I get asked every day. "How's your Dad doing?". And I cringe when I hear it. Not because it annoys me. I think it's very indicative of the amazing friends and support that my parents have. It makes me so happy to know that so many people care.
What I hate about it is that I don't know how to answer it. Usually I say, "oh, he's doing good" or "he's Ok." But then those answers started to bother me. What do they even mean? What is "good" when it comes to having Cancer. I truly don't know. And when I say that, I guess I'm saying it in terms of his health, but he also has a spirit inside of him that I find to be just as important as his health. He could be getting worse but God and his faith are carrying his burdens and his pains and giving him good days. Or he could be doing alright in terms of the cancer but getting tired and broken from having to deal with the daily tolls of battling it.

And like I said before, what do words like, "Ok" "good" and "alright" mean? To any other person those might mean that life is going smooth maybe a few bumps here and there but nothing to complain about. But when someone has an incurable disease like Multiple Myeloma it probably has a different meaning. Sometimes I wonder what goes through my Dad's mind when he answers that question. I'll hear him say, "oh...ya know, I'm doing good."

And the way he pauses makes me wonder what went through his head in that brief amount of time. Does he think of the pain he's in? Or maybe the exhaustion he has from the chemo? Is he thinking of his mental state and how fickle it can be. Possibly how yesterday was a really bad day for him but today is better. He could even be thinking that things are actually not good, but he needs to keep a positive outlook, and thus his answer.

I don't know. I just know that it's almost impossible to answer that question. And please don't think that you can't ask me how he's doing. I truly love knowing people care enough to take the time to ask. Just know that this is scary and it's ever changing. Dealing with seeing your Father fight cancer is a contradiction, it's odd in the fact that this isn't a normal person's life, yet it's normal for us now. And because of that I don't really know how to answer so I say "he's Ok." But I don't even know what I mean by that. I suppose I mean, he's not about to die, but he's very much still fighting for his life. I guess that's what I mean. I guess. I'm sorry, I just don't really know.