The Maryland Half Marathon

www.ummsfoundation.org/wildmanswarrior

On May 11, 2013 I will be running in my first half marathon, the Maryland Half Marathon. The fundraising I do for this race will benefit the University of Maryland's Greenebaum Cancer Center. This is where Daddy receives his treatment, so I am very excited to give back to them. If any of you could donate (follow link above) it would be so greatly appreciated :)

Help me help the people who keep cancer patients in their fight!!!<3




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Sleep

Lately that's all Daddy does, is sleep. Every day it seems to be the same. I show up, he might be awake, but usually not. I clean up his breakfast dishes, I make him a muscle milk, I fix his blankets and I sit down in the chair next to his hospital bed and start to read until he wakes up. He always wakes up scared, no matter what when you wake him up he reacts all jumpy and out of breath. It scares me too, what kind of nightmare did I wake him up from for him to wake up so harshly? I don't need to ask myself that question though because I know exactly what kind of nightmare, I share them. It's hard to fall asleep when you know your sleep will be restless and everything you're scared of waits in your dreams. I fall asleep and sometimes I see Daddy back in the hospital ons respirator and sometimes I see him in a casket, I imagine his nightmares are about waking up post-op all those times... Not able to speak or move or breathe on his own... So horrible. I just wish he could really sleep, quality sleep, sleep he needs to badly...




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Holiday Weeks

Sutent is 4 weeks on and 2 weeks off. Our oncologist calls those 2 weeks off, "Holiday." It usually takes a week for the Sutent side effects to subside, so Holiday is really only that 2nd week. Daddy bounces back, his coloring evens out, his appetite comes back, his energy level spikes so remarkably. I love this week, mainly because Daddy is awake more during the day when I come to visit and we get to watch out nerdy tv shows together on Netflix and play board games and just talk about school and how much better he is feeling that day. That 2nd week always gives me hope, seeing Daddy bounce back... It is just that, hopeful. I start to think maybe this is worth it, maybe the cancer is being beaten up by the Sutent just like Daddy's body is with the side effects of it and him bouncing back so well is because there is less cancer. Yet on the other hand, I have to be prepared for the worst to protect my sanity.





I really do try to be hopeful, Holiday is so always so nice. I can actually make Daddy a fancy sandwich or bring in pizza for lunch because his mouth sores have subsided enough to tolerate real food. Holiday also means that Daddy is usually comfortable enough to sit up in his wheelchair for longer periods of time. Last Holiday Daddy even made Momma a microwave dinner and a cup of tea and was sitting up in the kitchen waiting for her when she got home from work, she loved it so much. I was proud of him that day, I'm proud of him every day but that day he made Momma smile without having to say anything... And she doesn't get enough smiles anymore. I take advantage of Holiday, I try to take in all the time with Daddy when he can actually show that he's happy and has energy to make us happy too. My Daddy is such an incredible man and Holiday allows him to show his true personality and say sarcastic comments that will make you spit out your drink you're laughing so hard. I will never meet a better man in my entire life.

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Chemo Buys Time, But At A Price

The first chemo Daddy was on was a weekly infusion (hour long or more process). We didn't have very many side effects except that he was noticeably week. With the chemo he is on now, it is a cyclic dose of a daily pill. Four weeks on and two weeks off. Weeks one and two go by okay, weeks three and four are horrible. This round was the worst. He broke out in what the doctor called a Sutent Rash, acne like you would not believe, and everywhere. The chemo mouth sores we have become accustomed to are so bad that Momma had to blend her chicken soup up so that Daddy could just drink it. He says that even drinking water hurts. On top of everything, Daddy has shingles now. I have never seen something so awful. His shingles are open wounds and blisters, a ten inch by six inch wound on his back, that decreases in width slightly as it works it's way around to his belly button. I've been cleaning these wounds and bandaging them every day. It doesn't bother me, what bothers me is how uncomfortable Daddy is even to sit up in his wheel chair. And today I saw why, the tumor on his sternum has grown since I last noticed it. The feeling of sickness and sadness that hits your stomach when you can see a tumor protruding through someone's skin... It's almost unbearable. But of course I can't show this emotion because I need to finish Daddy's bandages. I use saline, clyndamycin, and a poison ivy lotion with a pain reliever in it. I put down non stick gauze, and ultra absorbent sanitary napkins for when the wounds ooze, and more gauze. The tape is the worst part, we found the most gentle tape we could but it still irritates his skin and I hate pulling it off every time I change his bandages. Then pulling his shirt on in just a way so that not to disturb the bandages. Whenever I help Daddy like this, he gets this look in his eyes, helplessness. That's the part about this disease that I believe is really killing him. He can't have pride anymore, because it would get in the way of us helping him. He is completely at our mercy and it has broken him, that look on his face... He's so miserable. Is chemo worth it's price?




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Just a Reminder

For any new readers, this blog was written chronologically. And the beginning is at the end, screwy I know. I would suggest reading them the way they were written though.


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It's weird.

Sometimes I fall asleep in the chair next to Daddy's hospital bed in our living room, and when I wake up I think we are back in his hospital room at the very first hospital. Ya know, the hospital where a spinal surgeon told me mother that my Daddy would be dead in a month... Yeah.. That place. And sometimes I wish I was there, but with all the knowledge I have now. I'd know just what to say and just what to so, but I know I could never relive that day again. I've been preparing for the end for so long now, that I don't know how else to be. It's weird being able to say out loud, "he'd be in a better place." Watching his pain, watching his anger... The only reason now that I am still being selfish and wanting him to stay with us is for my Momma... She will be so lost without him. She's probably be able to keep their house, but she would have to drop at least half of their bills, and my brother would have to start earning his keep. Momma will definitely be depressed for a lot longer than I will be too, she has not handled things so well lately but I can't blame her. Our governor wants to outsource part of her employee base, her son is not supportive of her in any fashion, her daughter tries but still can't do enough, and she has to watch her husband whither away to nothing. She has to sleep in their bed every night, and only sleeps on her side. She has to sleep knowing that Daddy is trapped downstairs in his hospital bed and can't do much other than go to the bathroom on his own. She has to sleep knowing that when she wakes up, she has to quietly walk downstairs so she doesn't wake Daddy, leave him breakfast on his table, and sneak out to work. She works so hard... Comes home exhausted... I really think she could very well fall apart when Daddy goes, and I am just not strong enough to pick her up. It's weird, not wanting Daddy to get better for me, but wanting him to get better for her. I wish that doctor had never told us that this wasn't curable... I wish we all still had as much hope as we used to... But that just wouldn't be practical, like I said... I've been preparing for the end for so long now, I don't know how else to be.

I love my Daddy.
Ill love him every day he is with me on this earth, and ill love him every day he is with me in my heart.




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Alone

At first, I felt a great presence from my friends... Supporting me. But as time went on, unless I reach out (which takes more effort than the energy I usually have) I never hear from them anymore, and it saddens me because it makes me feel like I can't reach out anymore. It makes me feel like I'm all alone. Even though I already know I'm pretty much alone, we all are, there is no other person in this world than can truly understand how another person feels. But still... I miss the false feeling of not being alone. I always put myself out there for my friends, always, above and beyond even. It feels pretty horrible to feel like I do right now. Sorry bloggers... But I had to let that out.




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I can't believe this is our life.

My family never deserved any of this, my Daddy does not deserve this death sentence. I don't care what anyone says, our world has so much potential at its disposal, cancer should not be a problem anymore. Find a way to suppress oncogenes and turn on tumor suppressor genes. Why is that still so hard to do? Why are the side effects of the drugs we do have, so horrendous? The mouth sores make it so the patient can barely even eat. The fatigue ruins every day. This should not be our life, no one should have to live this way. It is very hard for me to say, but I have lost a good bit of my faith with all of this. It is purely inconceivable to me how anyone is supposed to handle a life like this. Is this really a life worth living? I am being greedy and stubborn when I say that I want my Daddy around, because the truth is he deserves pain free peace.




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Normal Doesn't Exist Anymore

When you're father's will to live has been shattered by one sentence from a doctor, it's truly hard to fight through the knot in your chest and keep your own will to live. You put on a smile and you hug and kiss him as much as his pain tolerance will allow, you try to do your homework, you try to love your boyfriend, you try to keep up with family and friend relationships... But the truth is that nothing else matters to you except your father's happiness and well being. You'd risk your own life to let him have just one more breath on this earth, to get one more kiss from your mother, to watch one more inning of Yankees baseball. It's a feeling I really can't describe, you know that it's wrong to lessen your feelings for everyone else in your life but you can't help it, you need to focus all of your love into your dad... He deserves it, he needs it.





There is no such thing as normal anymore, but you can remember normal. Sunday night dinners together turn into take out from the diner. Watching our Yankees games together is reduced to watching them on a laptop at the edge of the hospital bed. Talking to Daddy on his lunch break is turned into spending ever spare moment with him. Your mother sleeping in on Saturdays has turned into her barely getting 4 hours a night. Your parents being financially stable has turned into affording groceries and the mortgage and nothing more. You being excited to visit your parents on the weekends has turned into anxiety because you know you will have so many chores and errands to run for them, while squeezing in homework, when all you really want to do is fall asleep in the chair next to Daddy. You don't know what good sleep is anymore, feeling rested will never be something you ever experience again. You can't listen to the radio because songs pull at every heart string. You can't eat certain foods because they bring such vivid memories, like Daddy making you his Lehnert famous grilled cheese and French toast for the first time.... You think you're happy one second, but the next you are crying. There will never be any such thing as normal ever again for you. This is the new reality.

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When You Realize This is It

When we were told that the Sutent was doing its job, we were also told that it is not going to cure Daddy, that there is no cure, that this cancer will kill him.

I partially take responsibility for how this news made Daddy feel, because since day one I had been drilling into his head that I would not let cancer take him away from me. I told him that we could and would beat this thing, that I had no doubt that survival was possible. What I didn't know, is that Daddy really believed me. When the doctor told him that there was no cure, and that all these medicines could do was elongate life, not guarantee it. A part of my father's spirit broke, I could see it on his face. As soon as the doctor left the room he began to tear up, Mom had already been crying, I sat between them and held one of each of their hands. There was nothing I could say, so I just sat there and let them cry.





Then Daddy turned to me and said, "did you think there was no hope? Did you think this was a death sentence?"

Now I can't help but getting tested up, what do I say? Yes Dad I've been lying to you? I just wanted you to stay positive? Instead at the time I thought it was a better idea to have him feel like I was right there with him in this moment of such emotion. I wanted to validate his feelings of helplessness, so I told him I still think that we will beat this thing and that I don't give a damn what doctors or statistics say, I refuse to have my Daddy stolen from me.

This seemed to calm and comfort him a little bit, but that was enough for me. The doctor came back in and gave us some new prescriptions to try for dealing with the side effects of the Sutent. We collected ourselves, and I convinced them to go out to lunch since we already had Daddy's wheelchair with us. We all enjoyed a stiff drink at Red Lobster with lunch, we all needed it. Then we went home and we all took long naps. When we woke up, we all pretended like we were fine again.


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Sutent is working!!

The Sutent tore Daddy apart the first round. Four weeks of absolute Hell. It caused extreme fatigue, which prevented his physical therapy, which worsened his pain level, which encouraged him to take more pain medication, which makes him even more tired. Vicious cycle. Plus, the chemo caused mouth sores so bad that I had to resort to making him nutritional protein smoothies because it was physically impossible or him to eat, which made him even more weak. My father is such a strong person, to watch him in such pain and without any energy made me sick to my stomach. He was starting to look like the cancer patients you see on TV, it got really bad. There were times he'd be awake for only 20 minutes and he'd fall back asleep, I'd find myself staring at his chest and my heart would not continue to beat until I saw his chest rise again. I lived every second of every day in fear that he would not wake up.

The next doctors visit we brought all of this up, it was the hardest trip in and out of the house and hospital. We spoke to a pain management doctor, he told us that we were actually over medicating and that it was causing Daddy autonomic (primary) nervous system to shut down. "Shut down"... I almost threw up hearing those words come out of the doctors mouth. But, he had a plan of action. Low dose morphine, steroid to help with fatigue and mouth sores, pump the protein. It was a complete turn around from there. Dad perked right up, spirits and all. When it came time for the first round of CT scans since being on the Sutent, we already knew it was doing something and working, it had to be.


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