What a Weird Christmas

This morning, I woke up early and made my family a big breakfast spread of French toast and eggs and bacon. When my mom came down from waking up, she pulled me to the side and asked me for a favor. This favor was for me to take as many pictures as possible, I didn't question her, but she followed up by saying, "this could be our last one." I guess I hadn't been thinking of it that way, I had been focusing on the fact that Daddy was home and not in the hospital like last Christmas. That he can get out of bed now, where last Christmas he was bedridden. I had never let the thought enter my mind that Daddy might not make it to another Christmas...





After losing my Pa the day before Christmas Eve, my psyche couldn't handle even talking about it any further with my mom. However, as the day went on I started to think about it... She was completely right, I needed to cherish the moments in today as best I could. I think I did. We had a lot of fun opening gifts, Daddy had us all laughing as always. I kind of dont want to fall asleep now though, I don't want to ever have to look back on this day as the last Christmas with my Daddy....

Merry Christmas


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Lately it's Been Rough

A little over a week ago, my grandfather (Pa-88 years old), had a pretty major abdominal surgery. He only started waking up yesterday, we thought that was a good sign until today when his kidneys decided they didn't want to start working right again. We are all preparing for his passing any day now... This is especially hard on my mother and I hate watching her go through this. Her and I have mastered how to emotionally handle "preparing for the worst", because it is our daily reality with Daddy. But to have to do it for her father too... She's been having a rough go of it. She asked me, "how can I handle losing my father and maybe my husband all in the same year?"
I didn't and couldn't answer her. How could I? I love my Pa, but I know that he, unlike Daddy, has lived a long and eventful life. Yes, I'll be extremely saddened if he dies, but I will be able to cope with it very easily. That sounds terrible, but death has become as easy a thing for me to talk about as the weather, and I'm glad it has. I need to be able to handle whatever happens. So I know that I will shed tears for Pa, but most of my tears will be for Momma...




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Never Knew What Pure Agony Looked Like Before

I am writing today because I don't feel like crying anymore. Maybe if I just type out all of my emotions, then the tears will stay where they belong. I just put together and cleaned up dinner for my parents and as Daddy went back to bed, I had to hold my breath so my emotions wouldn't come out. Getting into bed usually brings him some pain and discomfort, so I try to help him when I can. But just now, it took almost twenty minutes for him to get comfortable and for the pain to subside. Lifting his legs up into the bed made him let out yells of pain that I have never heard from him before. Leaning back onto the mattress brought just this sound of complete agony out of him, and it just did not subside. "Holy Hell", and "Oh my God." and ughhh.... I had to walk out of the room to catch myself from just falling into a ball and crying.

Today was his last day of his 4th round of Sutent. The pain should not be this bad at the end of a chemo cycle, it should be better!! Scans are schedules for Wednesday morning and I am not looking forward to the news they bring, this sudden increase in pain can only mean one thing to me, the tumors are growing again. I feel sick to my stomach just typing those words. The next 5 days are going to be nothing but stress and emotions until the results of the new scans are given to us, but at this rate, I don't even want to know what they'll say. If it's bad news, then the doctors might as well just not tell us because I don't want to have to look at Daddy and differently or treat our lives any differently than we already do. This sucks.

My parents are both literally falling apart... Momma went back to work yesterday after finding out that she now has shingles over the weekend. She though it was getting better, but shingles had a different idea. She had to stay home from work today, in some pretty awful pain. She was able to come down for dinner, but then went right back up to bed to take some more pain medication. Both of my parents are just in constant pain at this point and I just cannot handle it, not even a little bit. Plus, my mom is dealing with her father, my Pa, being hospitalized right now. They won't let him go home because his heart beat keeps fluttering. And her little brother, my favorite uncle, was advised by his precinct's doctor to stay home from work until next week with a very serious case of bronchitis. The Irish superstition is that bad things come in threes...my mom, her dad, her brother, all get sick at once... I will never doubt this superstition ever again.

Well, the point of this post was successful, no tears for me. I still can't breath with ease but I'm sure I'll calm down eventually... actually probably not until Wednesday.

Hurting All Over

Watching Daddy completing his limited day to day tasks, he hurts. Sitting up, standing up, sitting down. By far the worst though is when he lays down into bed, I have to close my eyes and pretend I'm not hearing the sounds of agony coming from him, otherwise I'd cry every single time. Once he's laying down for a little while the pain subsides and I can tuck his legs and feet under the covers for him. Chemo makes it worse, cold makes it worse, being up in his wheelchair for a while makes it worse, but nothing makes it better. Sometimes I try to convince him to let me bring his lunch or dinner to his bed and ill eat there with him just so that I don't have to witness his agony getting to the kitchen table. Plus, usually after he eats lunch he will just pass out, sleep is good, very good, but he sleeps a lot lately... With the December 5th CT scans coming up so quickly, my mind races...




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He is Mine

Cancer is a daily struggle
As mortals all we can do is pray
For strength to win this fight
Yet he knows he won't win his battle
"I love you"
it's not enough to just say

He sleeps and sleeps
As the cancer eats away at his body
But his chest will still rise and fall
He is still able to go on somehow
The tears, and pain, through it all

There is only so much strength left
Only so much more time
God will ask for him back soon
What he doesn't seem to understand is
He's my Daddy and He is Mine.






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Such an Uncomfortable Realization

When I realized that my Daddy was okay with dying...

My parents have had some ups and downs with finances from even before Daddy was diagnosed, but definitely after. I had dinner the other night with my parents and Daddy swallowed his bite of food, looked at my mom and told her that she will need to refinance the house soon. She asked why? We are making ends meet with your social security checks. Daddy responded, "when I die, you will need to refinance the house so you can fix it up how you've always wanted to and to live comfortably while you finish out your 25 years until retirement." I was surprised that Momma wasn't surprised by this. I kept chewing my food so that words couldn't come out of my mouth and that my facial muscles were too busy to look upset by what Daddy had just said. He said it with such ease, and poise, I just couldn't believe he had really said that. They continued to talk about how refinancing works, like Daddy's death wasn't a prerequisite to all of these decisions happening. I wasn't hungry anymore, so I just started to clean up the dinner plates and putting away left overs. When my ears picked back in on the conversation they had changed subjects and moved on, thank God. I am happy that Daddy is accepting what is eventually going to happen because it will allow him to look forward to his days left instead of living them in fear of dying. But, at the same time the fact that he has come to terms with his death worries me because I don't want him to be giving up hope, he can't give up hope. Then, I look at Momma and how she handled it and I know she is just in denial for now and getting by day by day but... She needs to start taking care of herself too. Her hip hurts so much that she cannot walk, he was losing weight this time last year and that has completely reversed itself. She never sleeps enough, she never looks or sounds rested. I wish I had the money to send her to a spa, but I have yet to find work. I don't really want to work, I want to spend time with Daddy, but my parents can't keep lending me money, I have to get a job an lose my time with Daddy and that really upsets me...






On another note, I have convinced Momma to go to our local funeral home with me this next week. I finally convinced her, that in the end it'd be the easier thing to do. We need to just go, make all the decisions, and have it all set up in advance. So that when Daddy does die, we can just call the funeral home and they will know exactly what to do. I know that one of Daddy's wishes is to be cremated, and to have his ashes spread on a baseball field. He swears he doesn't care what field, it could be a rec field, but I know where he really wants to be, the Bronx. In my free time now, I plan out how the hell I am going to sneak his ashes into Yankee stadium, let alone get them onto the field. Thinking about this though, it helps. It helps me to come to terms with the fact that Daddy is going to die, and it will be soon. There is no chemotherapy cure for stage four kidney cancer. But I cannot think of what I will do after he is gone, I just can't.

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The 4th Round of Sutent

The fourth round of chemo is a mile marker for many cancer fighters. That fourth round usually is followed by a second or third set of scans to mark the diseases regression or progression. Also, the fourth round is usually when a lot of chemo's are changed in dose or changed completely.

Daddy is in the midst of his fourth round of Sutent. However, his sixth round of chemo all together because his first chemo failed him. The last round of Sutent was terrible when it came to side effects. The mouth sores were unbearable. Daddy found it so hard to eat that he lost enough weight that his wedding ring and claddaugh ring easily fall off now. The fatigue was so great that Daddy would only get out of bed to use the bathroom and to occasionally come to the dinner table. He broke out in what is called Sutent Rash, as well as shingles. Chemotherapy lowers your immune system, the shingles were a million times worse due to this, I will spare your gag reflexes and leave it at that. Daddy is in a lot more pain these days as well, I have to help him lift his legs into bed, and he can't help but moan as I do. He has to catch his breath and let all the pain subside once he gets into bed before I can put his blankets over him. I think this is what breaks my heart the most...






This round of Sutent will be followed by a set of scans. Last set of scans showed that Daddy's cancer was stable, no new growth. With how much pain he has been in, I do not think we are going to be getting those same results with next month's scans. I am just happy that the second week of December will mark a whole year with my Daddy that doctors said I wouldn't have. A whole year being kidney cancer warriors, our lives have changed... Completely.

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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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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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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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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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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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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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Little Steps

Every chance I got, I went down to the nursing home in the city and spent time with Daddy. I loved being there for his physical therapy and watching his progress. His room is about 40 feet from the physical therapy room, when he can manage he walks himself or wheels himself down to the room. Otherwise, a therapist aide comes to help him. This room is set up with normal gym machines, and adaptive ones. The sitting down elliptical was Daddy's favorite. But our main concern was his balance, and if he could do the stairs. With every step, I held my breath, and every time he looked back at me I made sure my face looked so proud and happy for him, to encourage him and keep him positive. Keeping him positive is so hard, but so important.

When he makes it back to his bed, he is exhausted. His breathing is heavier now than it was after he'd work out when healthy. The nursing home staff doesn't know what rinsing is, so when he gets bathed, he gets soaped up and patted dry, never rinsed. His skin is flakey and itchy and miserable. After physical therapy he is sweaty on top of that. I just talk to him, distract him if I can. I want to take all of his hardships and put them on myself. I want my Daddy to be comfortable.


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Havent written in a while

So after dealing with the screaming lady on the second floor, we actually got Daddy's orthopedic surgeon to call the CEO of the nursing home chain and demand that Daddy be moved as far away from the screaming woman as possible because the environment she created was not conducive to his healing process... He finally got moved to the first floor! The rehab floor! Where he belonged ALL ALONG. His new roomie was a deaf gentleman who I assume has type one diabetes circulation complications because both legs were amputated, one below the knee and one above. The man was very friendly and watched his TV with subtitles.

The idiot doctors and nurses (nursing home NEVER had an ASL interpreter for him, EVER) would just yell louder at him, he is DEAF he cannot hear you!!! ...and since he had to play charades to be able to communicate his needs, I bet his needs were never fully met.

I felt bad, but I never met any family or visitors to be able to discuss my concerns with them. Momma and I would bring him sugar free treats and baked goods, they seemed to brighten his day enough.

At least Daddy was on the rehab floor and could wheel himself to the physical therapy room by himself, this way his PT was never forgotten about and he received therapy every day. He also finally had the window side bed. He could see the Natty-Boh man at the brewery light up every night and could feel like he wasn't confined... As much.



I just wanted him home...




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Going back

So, Daddy had to go back to that awful nursing home. Again, he was not placed on the rehabilitation floor. This time he got put on the second floor, across the hall from a woman who screamed at all times of the day and night. Daddy said that his roommate had to request sleeping pills, plural, to sleep through her screams and tantrums. Like sleepless nights are exactly what Daddy needed...





Momma started yelling at any ear she could get ahold of, to try to get Daddy away from this awful woman. Of course, the staff at the nursing home acted like they had no fault in the matter. If you don't want to take responsibility for the elderly and sick, then don't work at a nursing home!! This second floor was full of resident patients, who are destined to die there. My Daddy might have cancer, but I refuse to let him recover in a place like this... Refuse.



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PT was hard

Physical therapy for Daddy's new titanium femurs was rough, he said it felt like he had to lift 30lbs of extra weight just to move his legs. It didn't help that he still hadn't gotten anymore feeling back in his legs due his spinal tumors. Those things just wouldn't give. PT's and PTA's would come in to the room fairly often, doing bed exercises and getting Daddy up on a walker. He couldn't do much on the walker, so I knew we were going to have to go back to that awful nursing home. Our county refused to designate their nursing homes as "acute care", so we were stuck with this one because insurance would cover it.... Made me sick to my stomach thinking of sending him back there. Daddy seemed to be in good spirits though, a lot better than prior to the surgery.





Prior to this surgery, I think Daddy wanted to really give up but Momma and I convinced him to push through and receive this surgery. We just hoped it would be his last. Three surgeries in three months, I don't know how his body was able to cope and be so resilient through it all. Now we had to start planning for the nursing home again, and somehow finding a way that I could be with him for the back and forth to radiation again. This wasn't going to be as easy as last time, because last time I was on winter break. Daddy was receiving his chemo infusion in his hospital bed as I was trying to figure out everything... Did I eat that day? I remember thinking that to myself... Priorities I guess.

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Toll Money

The only hardship I really found I had to deal with was toll money and parking garage money. The gas money didn't bother me, it was my choice to live a half hour from my parents and an hour away from the city. I just hated the fact that money had me dictating when I could see Daddy. If I didnt have enough money that day, I couldn't go to the city to see him. Sometimes I'd ask for money from my Momma, but I hate doing that. So when I was spending time with Daddy, I made it count. I started to stay up late and do my homework instead of doing it while I was visiting with him so that I could just focus on him. I also started packing my lunches and snacks so that I wouldn't have to waste time in line at the cafeteria. I prayed every night for more time with my Daddy.

Still praying for that, every night.




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While he Sleeps

Every day continued on, work school work drive down to cook for Momma and my brother, or work go see Daddy work maybe do some homework, every day... On and on. I didn't feel much, somehow my body and mind were able to just do what I needed them to do and that was it... Until, Daddy fell asleep.

Every time I'd go to see Daddy, PT and nurses would be in and out keeping him awake. I'd try my hardest to distract him and keep him entertained, I even downloaded some of his favorite board games as apps onto my phone so we could play. Then came serene moments, when Daddy was able to fall asleep. He made funny facial expressions, and would moan sometimes, but at least he was asleep. Cancer can't get him in his dreams. Those moments were when my emotions would overcome me... I'd cry silently so I wouldn't wake him up, I'd think about how to quickly fix my face so when he woke up he couldn't tell I was crying, and then it'd get to a point where there were no more tears, just sadness, just a feeling in my chest that wouldn't go away... Ever


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The Next Day

The next day, I had only gotten about two hours of sleep... Momma was going to try to get through a normal work day, so I took off of work and went to spend the day with Daddy. I was seriously surprised to find that he was still stuck in the recovery unit because the orthopedic floor still did not have an open bed for him. When I told Momma, she was furious... Recovery unit nurses are required to wake you up regularly and test regularly, which is nice... But not when you want to sleep and NEED to rest, and being in recovery means that Daddy had not been seen by physical therapy yet, when the surgeon wanted PT see him right away to get him up and moving on his new titanium femurs. Momma called the surgeon and not a half hour later he found me in the surgical waiting room as I waited for the next visiting hour to come. He was wearing one of his ridiculous bow ties, so I really couldn't take him seriously, but he told me he had made room for Daddy on the ortho floor and that he wanted me to come with him to walk along as transport team took Daddy upstairs to his new room. Daddy was so happy to hear the news, but I could tell he was not excited about PT, he was still in a good deal of pain and found it very difficult to get comfortable and fall asleep.





We got into the room, the surgeon and PT brought in this ridiculous contraption that helped Daddy stand up. They just had him stand and take a few steps and he was exhausted, I could see his leg muscles struggling. I felt tears welling up, but I was determined not to let Daddy see them, luckily I saw the lunch tray cart coming... So I told Daddy I was going to get my own lunch so that we could eat together. As I walked out of the ortho unit, I knew where the nearest bathroom was (to be TOO familiar with a hospital) and as I shut the door behind me, I fell to the ground and tears poured down my cheeks... I couldn't even feel that they were there I was so upset and filled with adrenaline, I didn't know I was crying until the tears started to drip off my jaw bone into my lap. Once I realized I was a mess, I stood up, took a deep breath, wiped me face, reapplying foundation powder, and went to the cafeteria to pick out the food I was going to force myself to eat... Hunger didn't exist a lot when in the hospital, I'm honestly surprised I never got sick from forcing food on myself... I just knew I'd need my strength so I needed to eat.





I got back to Daddy's room and he was panting with exhaustion, and has his lunch tray untouched in front of him. I didn't make him ask, I just started to cut up his food and started to feed him. Once he told me he was full, he took my hand, kissed it, and fell asleep. I fed myself with one hand because I couldn't bare to let go of his hand while he was sleeping... He slept for almost four straight hours... When he woke up, he kissed my hand again and turned on the TV. I will never forget these moments, ever.


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Waiting

We waited and we waited, and finally one of the surgeon's residents came out and told us that they were half way done with the surgery, so they had to flip him to the other side and complete his second leg. This was a good thing because there was a chance that if the first leg went wrong, then the second leg would have to be a second surgery all together. So it was good news... But for some reason I wasn't happy to hear it... The only good news I wanted to hear was "cancer free", but I knew I'd probably never hear a doctor say those words about Daddy... So I forced a smile and my Uncle Kevin made me take a walk and get some coffee with him. He was always good at taking my mind off of things.

A few hours later, the surgeon came out and told us that everything went well, and that Daddy barely needed any blood which was a HUGE deal because the last surgery, he received 14 units of blood... Almost the same amount of blood that is in his entire body. He told us that Daddy would be in recovery for at least the night because the orthopedic floor didn't have any available beds. Every two hours they'd let you visit in the recovery room, so Momma and I went back... He was AWAKE, this was the first surgery he'd had that he was awake in the recovery room when we went to see him. But, he was in some serious pain and discomfort, doctors always have a hard time giving him the correct amount of pain meds because he is like treating two and half normal sized people... It hurt me to my core to see the pain in his face, then he said to me that he didn't think the pain was worth it.. That even with titanium rods, he'd never get to walk normally again because of his spinal tumors... He started to cry, I saw Momma start to cry, and I just held my breath so that I wouldn't cry too... Took one of each of their hands, and sat there until close to the end of our visit time. The doctor came around and gave Daddy a pain medicine that would knock him out until morning, so we said our good byes and Uncle Kevin took Momma and I to dinner for Burgers and then we went home to watch out Giants win another playoff game...




I slept in Daddy's hospital bed in the living room, keeping it warm for him. In the middle of the night, I heard Uncle Kevin's voice, "hey kiddo, I got called in I have to go, I washed some laundry for your Mom you need to fold it, stay strong angel." I couldn't fall back asleep, so I went and got in bed with Momma... She reached out and held me and I fell right back asleep.

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Surgery Day

This was Daddy's third surgery in three months, I honestly couldn't believe he had made it through it all... Strength must be a family trait I suppose.

I had to go to morning work and a class on the day of surgery, but I called Daddy before and after work to tell him how much I loved him and that I'd see him when he woke up. I couldn't concentrate at work, trying to tutor a boy who really needed my help and I just could not do it... But I couldn't stress about that now, bigger worries on my mind... At least Momma wasn't alone while she waited, her brother, my Uncle Kevin came down from NY... He's my favorite uncle for many reasons, but especially for how he can calm Momma down no matter what, I love him for that. So, Momma and Uncle Kevin were at the hospital with Daddy while I was not concentrating through work and genetics class... Didn't help that there was this guy in my class who just hit every button I have with how annoying and frustrating he is, I'm sure I channeled some of my worries into ignoring his rudeness all throughout class... Still can't stand that guy... But finally, class was dismissed, I hadn't comprehended a thing so I brought my textbook with me to the hospital to read in the surgical waiting room. I tried not to speed but I was just so anxious to get to down to the city to the hospital... I think I had angels on either side of my jeep because I remember I didn't hit any traffic (miracle) and found a parking spot on the first floor of the garage (impossible)...





I put on my backpack and my purse full of all things on earth and rushed up the stairs of the garage and across the street, I jay walked, and almost ran over a few people to get through the stupid rotating door and to check in at guest services to get a wristband (those people are idiots), and then walked as fast as I could to the stairs to the surgical waiting room.

My Uncle Kevin was passed out with half a muffin resting on his gut, and Momma was in a newspaper... I dumped all my bags and embraced her... She is the strongest woman on this planet... And we just sat... And sat... And sat... The waiting is THE WORST...


To be continued

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Meeting with the Orthopedic Oncologist

We go through our usual issues and struggles, getting Daddy out of the house and into the car... Except this time, I had to be ready to lay out my body underneath of his if he were to fall, if he were to suffer fracture, he would most likely die of infection, so I had to be ready... I focused the whole time down our walk way, using my basketball defensive stance to be with Daddy every step of the way, luckily we made it to the car. Daddy was in extra agony today because every bump in the road e could feel the sensitivity in his hip joints where the tumors had invaded his femurs. I just kept one hand on his shoulder the whole ride... And of course we had to wait a good thirty minutes to get a wheelchair from the hospital lobby... Their front desk and transport staff is and was awful. But we finally got into the office we needed to be, in the cancer center.





The doctor came in, his specialty is surgery with cancer of the bones... Daddy's kidney cancer seemed to love living in his bones... The doctor began to explain the procedure to us, he would go in to the leg up at the top, outward of the thighs. He would then slowly insert titanium rods into both of the femur bones, while removing what tumor he could(if he could), and that it would take about three hours a leg plus anesthesia before and recovery after. He said that Daddy would be encouraged to get up on his legs as soon as his vitals became normal after surgery, Daddy liked this... So I pretended to be just as excited... But I knew that this surgery was really only to help Daddy to MAYBE walk again, not to treat his cancer, and we still had not begun chemo because of all the surgeries needed... Three in three months... My Daddy was being so strong through it all, so I pretended to be strong right along next to him... Tomorrow would be surgery day... I felt sick to my stomach


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How we spent our days

Daddy was very restricted to being able to only get up when he absolutely needed to. So when I would come down between morning work and afternoon work on days I didn't have class, I would basically be playing nurse. I didn't mind this one bit because we had an appointment with the new surgeon for the end of the week and I wanted to spend every moment I could with Daddy before we had to take him back to the hospital... Only thing I hated was that I had a morning class after morning work the day of the surgery. I would take off afternoon work that day but it meant that I would have to say my good lucks the night before because I wouldn't be able to see Daddy before he went to the OR.





Since Daddy couldn't really get up, I would get to the house around 9am, and clean up his breakfast dishes... Momma always left him cereal on his table next to the hospital bed... Then, I'd empty out his urinals(something the nursing home rarely ever did) and actually CLEAN them (something the nursing home really NEVER did), then I'd set up shop... I'd pull over one of our living room chairs as close as I possibly could to his bed, I'd snuggle in to the chair and turn on one of our shows on the laptop Ken and I set up for Daddy. Ken had set up his Netflix account and sljngbox so that Daddy could even watch the TV downstairs on the laptop if he wanted to... Ken's quite amazing...

I'd then figure out what the heck was in the house that we could make him for lunch... Usually a sandwich or frozen meal... And then I'd have to endure him struggling to eat... I'd of corse cut things up for him, but he still had issues due to pain...


We'd watch movies and TV shows and is do some homework, sometimes we'd both take a nap... But then the horrible part came, leaving... I don't know if it was "Catholic guilt", or selfishness, or simply pain... But leaving my Daddy is still today the hardest thing to do... I'd lean over the railing of his hospital bed and kiss him on top of his head, and tell him how much I love him and that I'd give him a call later, then I couldn't look back, if I did, I'd start to cry as soon as I sat in my jeep, and crying and driving don't go well together. I just hate when he's alone, what happens if he needs me, what happens if he tries something and falls... Then the ultimate, what happens if the cancer gets him and I'm not there to hold his hand as he goes to meet God...

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Enjoyed it While it Lasted

Daddy was home, we had dinners together again, we played board games again, we watched our Gibbs at HOME:):)

I got to cut down my commute to Daddy by 40 minutes, so I also got to spend a lot more time actually spending time with him... I was enjoying it so much.

We had a follow up visit with surgeon from his kidney surgery which was in a building a few blocks from our hospital in the city, and he took out his staples and said everything looked good. Then, we had to wheel Daddy down to the hospital for a new set of cat scans. Well, that night they called... He had two new tumors. Each was in the head of the femur bone known as the ball of the joint. These tumors were jeopardizing his femurs and leaving him at risk for fracture. Once Momma heard that, they knew he would not be allowed to walk unless he absolutely had to... And, more surgery...




When we got home and received this news, I immediately started to make dinner for us and I had texted Ken about the new tumors so he packed us a weekend bag and was coming down for dinner too, no idea where my brother was, but I had taken on the responsibility for informing Brian of everything so I was trying to get him to come home for dinner for once. I had no such luck. We were all pretty silent, Ken did his best to crack jokes at dinner... Daddy always likes his jokes... I just had this overwhelming feeling of selfishness, I knew the surgery would help Daddy's risk of fracture so that he could work on walking again, but I wanted him to stay home with me... I wanted my Daddy all to myself...


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He Came Home :):)

Well, after two weeks of the nursing home and our insurance company battling, it was finally decided that Daddy would come home and we would follow up with oncology about starting a chemotherapy. We were so excited to have Daddy come home!! We had all the medical equipment delivered and everything was set up. When my mother was sick in 2008, she had to come home to a hospital bed too, so we knew how to have everything situated. A hospital bed in the living room, which has the bathroom and kitchen within 10 feet of it. We had everything ready for Daddy to come home ... Even dinner :)




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One of our neighbors put a sign on the door while we weren't home as a nice surprise and I used window paint to decorate for the big occasion. We went to the nursing home and had to wait for their idiot doctors and nurses and the social worker to put together all of the necessary paperwork for him to be released, these people really cannot do anything correctly or efficiently. Mom had to hold the doctor's hand through the process, but we got it done. We wheeled Daddy down to the first floor and brought the car around. The car is very low to the ground so even with our help it was very hard for him to get in and out of, but we got him in and out of that nasty awful place. Daddy turned and said to me, "it feels really good to driving the opposite direction of the hospital, so good that all these bumps and potholes feel comforting instead of agonizing, let's go home."





We got to our exit and Daddy started to get really excited... We got to our neighborhood and our next door neighbor came out and welcomed Daddy home and helped me and Momma get Daddy out of the car and up out sidewalk to the porch. Our porch has two huge steps to get to our front door, but Daddy did it :) he used his walker and came right into the kitchen where we had set up his wheelchair, a wheelchair for TALL people so he could actually be COMFORTABLE, what a concept. I heated up some meatloaf I had made the night before and Daddy scarfed it up... Real food.... He was home, and we were happy.


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Healing, good or bad?

Daddy was making a great recovery from his second surgery. So of course, the insurance company was going to kick him out of the nursing facility where he suffers horrible conditions to receive one on one physical therapy every day. Once you get just the slightest bit better, insurance companies pull the plug . Don't get me wrong, I wanted Daddy as far away from that place as possible, but the physical therapists almost made up for the over bearing smell of urine that flooded the halls. Plus, Daddy was in good spirits, I could tell he wanted to come home too but he was so scared and his pride is so strong... Last thing he ever wants is to be someone's burden... He knew he would be "burdening" Momma and I by coming home. He to this day doesn't understand how to the core our love is for him because he is so far from a burden, anything we have to do for him is a blessing to us because it means we are together.




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Cancer is Not Contgious

After my Daddy was diagnosed with such an advanced cancer, my friends kind of disappeared. I had select family and friends that would check up on me maybe once every two weeks, and Daddy had select people calling him... But for the most part we were just on our own...




Yes, this is and was a rough time for us, but how long can you stare at the same faces and talk to the same people? Sometimes you need a fresh face... We felt so alone even though we had each other. I know if I didn't have Ken, I would not be in a good place. But since no one was stepping up for my brother, mother, and father, I had to be everything for all of them... I just couldn't understand people's perception of us... We are/were still the same people... Cancer is not contagious, so what were they afraid of? The answer is, their own emotions... Is it fair not to call or visit just because you know it'll make you cry? NO. It sounds harsh, but it's the truth.

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Monotony

Every day started to blend into the next... I was going to all of my classes, but I had so much on my mind, I really don't remember much of them. I remember studying, I remember doing research, and I remember checking grades... I do not remember the semester though. I'd get up at 6, go to work at the middle school for tutoring from 7-8, have class from 8-2, call Daddy, eat something and do homework, work from 3-6 for after care, then have class again from 6-9. And on the days I did not have class, I went and saw Daddy between morning and afternoon work shifts. Visiting Daddy meant bringing him some interesting snacks since the nursing home food was mostly not edible. I'd bring my homework and Daddy would fall asleep. He told me he stayed up most nights from the moaning and screaming of the patients, he would just turn his TV volume louder. He said that when I came to visit that he felt safe enough to fall asleep, and when I'd have to leave he would apologize for not being good company, id tell him I got a lot of work done and that he needed his sleep. The rides to work from there would be awful, i'd hit traffic always and the area between the nursing home and the highway was pretty ghetto. I'd let out all my tears through singing along to the radio, and when I got to work I would shove my emotions down into my tummy so that I could help my kids at work without having my struggles take a role. Some days I was okay, and some days I bet I looked like a zombie. I survived though, somehow. I graduated that semester with honors and the educational department award, somehow. Daddy and Momma and Ken were so proud of me, it bothered me though because I almost couldn't remember the effort I put in, I was on autopilot I guess.




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Back to that Hell Hole

Daddy was very slow to heal from his surgery, took almost three weeks before he was up and moving with the physical therapists. I could tell he was in a lot of pain, but he was pushing through. He hadn't given up hope, but I was having to pull Momma's strength an courage up from her stomach. She was and is always on the brink of destruction emotionally, she hides it well though. My brother was not helping...





This experience with the social worker was a little better, but not by much. We made it clear that Daddy would only be at the nursing home for rehab purposes until he could get into our house. Our house has two huge stairs of a cement porch to be able to get into the main level of the house. My Momma had been chronically ill a few years ago so we knew we would need the same kind of set up for Daddy, but until then, he was stuck in the nursing home hell hole. This time at least his room mate was sane and pleasant. I brought in more pictures and drawing and AIR FRESHENERS... This place... I dreaded having to leave him there alone.... I felt bad for every person stuck there.




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A Rough Recovery

This surgery seemed to take more energy and life out of Daddy than the spinal surgery did. The breathing tube came out eventually, but it took a long time for the doctors to sign off on it coming out because Daddy's blood pressure and oxygen saturation levels kept going crazy. During he surgery the doctors had to deflate one of his lungs, it took almost six days for his lung to really start up working again. I was just glad that it never looked like he was struggling to breathe, to me that meant he was going to be okay. I just kept wetting his lips around the breathing tube and putting Chapstick on him.... Holding his hand, and talking to him, I just kept finding things to talk about, even if it was pointless because being silent in that room meant that you could hear the nurses gossip and the alarms from all the other patients, at least my voice was something better for him to listen to.





I would bring my homework and use the hospitals WiFi to complete all of my assignments. I never thought I would look forward to homework, but I did. Doing homework meant I was forcing myself to focus on a task other than fighting cancer, other than lifting Momma's spirits, other than pittying myself, other than keeping Daddy's thoughts positive... I could just leave my conscious mind, and throw my efforts into the academics at hand. Plus, it gave me something else to talk to Daddy about, even minor achievements like a good grade on a quiz and Daddy's face beams with pride, so I forced myself to keep going. Did I sleep this past spring semester? I really don't know.






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More surgery

Now that Daddy was done radiation to his spine, it was time to take out his evil kidney that had started all this...

There was an 11 centimeter tumor on/in his left kidney, it had begun to infect his spleen and attached to a piece of his rib. They all came out. This surgery scared me, it was only my third week back at school for the spring semester, and somehow I was managing a 4.0 while only crying once a week. I remember sitting in the family surgery waiting area, that we didn't know about during the spinal surgery, and thinking to myself... If I can only last a little longer, maybe I'll find more energy somewhere.





As Momma and I sat waiting, I did homework and she read her NY newspapers she loves so much. She has begun buying them more often since Daddy's diagnosis, I think any feelings of home on Long Island give her small comforts. I finished up my genetics lab reports and went down to the cafeteria. Momma had found out that if we wear her work ID when we go to buy food, it looks like the hospital IDs, so we get employee discounts, which are still ridiculous prices... I don't understand overcharging people who are visiting sick loved ones, kind of demonic if you ask me. I paid, and went back to Momma's side. I could tell that she was fighting back tears while she was on the phone giving up dates to my Aunt, Daddy's sister. So I opened her chicken salad and began to feed her so that she didn't have to pile one more thought or stressor into her head.





After we finished eating, Momma found a way to fit on the midget sized benches for her to fall asleep. I began to text Ken when I saw the doctors coming our way. I shook Momma awake, she knew why without having to ask, we took each other's hands and held our breath. The doctor smiled as he said how well it all was, his resident that was very friendly with us hugged me and whispered , "he will look bad, be strong," in my ear. Every hour on the hour until midnight is when visitors could be escorted to go see patients while they're in surgical recovery. Daddy had lost 14 pints of blood during surgery, that's more than is in a normal human body, but our family is twice the normal human size... I knew this meant he would be in recovery for a while before being moved to
ICU. Momma went home, she had to work in the morning. I had this feeling that Daddy was going to wake up soon, and on the next hour's visit, he did:) He let out this sigh of agony, and then I saw the smile in his eyes to see me there. I told him what all the doctors had said, and I told him what his vital sign numbers were, and how much I loved him. Breathing tube again...


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Radiation

After two weeks of healing from surgery, it was time to start radiation to his spine. Lucky enough his radiation was during my writer break so that I could ride along in the ambulance every day from the nursing home to the hospital for radiation. It was really hard having to deal with a different transport crew every day because it was hit or miss if the workers cared or not. Plus, just like when we came to the nursing home the first night, every bump in the city streets was felt in Daddy's back, I felt so badly but there's nothing I could do. So I just kept telling Daddy which streets we were turning onto, he always got so happy when I finally said we were on Lombard street because the ambulance entrance was off of Lombard.

Radiation oncology was on the basement floor because of how heavy the equipment is. We would enter the ambulance door, 1534, Daddy memorized the door code and good thing he did because some of the transport workers didn't even know it and we had to tell them. We went in, turned right, and radiation was at the end on the left. Good thing we paid attention to that too because some of the transporters were completely clueless.





We would get dropped off at radiation, Daddy would get transferred to a hospital stretcher if the treatment was going to take a while that day, otherwise the transport crews would stay with us and take us back. If they left us there, I'd have to call afterwards and wait for them to come and find us, they were pretty awful at that. Those days, Daddy and I would usually be waiting a while. We would play Trivial Pursuit on my phone and talk about nothing. I just kept trying not to imagine what it'd be like if I wasn't there...





Then we would go back the way we came, over all the bumps in all the city streets, back to the nursing home. He'd get slid from the stretcher, back to his bed, and would usually take a nap. It smelled too awful in the nursing home for me to ever be able to fall asleep there, but he needed his rest. I'd put on the TV, and draw. I drew all sorts of pictures to make Daddy's room there more bearable for him. The place was just so awful...

Te last day of radiation was something special... All of the nurses in radiation oncology are angelic women, they were always nice to Daddy and I and would actually be interested in talking to us about something other than cancer. On this day, it was Daddy's last treatment of a long two weeks. After they wheeled him out of the treatment room, one of the nurses got on the intercom and shouted CODE SUNSHINE EVERYONE CODE SUNSHINE!!! I had no idea what that meant, but they wheeled him out into the lobby and there was a bell. They got him as close to the bell as they could and Daddy rang that sucker really hard three times. Everyone was clapping and congratulating him, the staff even gives out a graduation from radiation diploma. Daddy smiled, we didn't know we would be back for more two months later...

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Crying

After Daddy was diagnosed, I cried for about ten minutes a day, for about two weeks. Once we had a plan of attach, I couldn't cry. I'd get sad, but no tears came even when I wanted them to, it was so weird. I didn't really know what to think of it, I guess I just started challenging my energies into finishing the semester and spending as much time with Daddy as I possibly could. I remember the first time I cried after his spinal surgery was when I left the nursing home one day. It took them almost a three days to get Daddy's medications all ordered and filled, luckily he tolerated pain very well as long as he didn't have to move. This one particular day was the day Daddy's pain medicine finally came, or at least Momma was told it had came. I had gotten to te nursing home around noon that day and Daddy said he still hadn't received any pain medicine that day. I went and bugged the people at the nurses station, they are only there to "yes" you to death, but it was really all I could do. Two hours went by and still nothing, so I called Mom. She callers our insurance case worker who then called the doctor at the nursing home. He came up to see Daddy and said that the nurses did not communicate to each other that the pain medicine had arrived and he apologized. If this happens to Daddy, the most lucid patient here, my heart ached for what was happening for these poor elderly patients. I just remember thinking, thank God for Momma, and I broke down crying as I drove through the tunnel to get back home. I hated the fact that I had to leave Daddy in such a disgusting place. One tech to every eight patients, one nurse to every floor which had over 30 patients. There is just no way that every patient in that place was getting the proper care.


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The Awful, Awful Place

Daddy now had six vertebra made of titanium, and through the healing process he was not allowed to really move. And once he was off of the breathing tube and his blood pressure was kept normal for a while, our insurance company said we were no longer welcome to stay at the hospital on their tab. We knew we would have to pick a nursing home type facility so Momma was using her contacts at work to do some research. As she is doing that, we had the hospital's so called Social Worker come in and this is what she said to Daddy and I....

" Oh hello Mr. Lehnert, today we are sending you to _____ nursing facility, here's a pamphlet about their accommodations, transport will be here at 4 to come and get you, have a nice day."

Um WHAT?! No choices? No say in the matter at all? Momma was still doing research and this woman had took it upon herself to kick us out!! I immediately called Momma, she flipped her lid, I could only imagine how her face gets as red as her hair... Someone was about to get a good old angry Irishwoman yelling, I was just glad it wasn't me.

About 20 minutes later Daddy's nurse comes in and tells us the transport plans had been cancelled, then his spinal surgeon's resident came in completely apologetic. Momma had called the surgeon.... The resident said that he would write up a reason for Daddy to stay another night or two and that Momma would then have time to research.




The next day Momma picked a place on the water, but still in the city. At least she'd be able to stop there before and after work. It still made my commute to Daddy about an hour each way, but he's worth it :) I only had two more weeks left in the semester, then I'd have a month and a half off from school and work to spend with Daddy. When the transport unit came, they slid Daddy onto their stretcher and I rode along. Daddy let out a yelp as they drove
over every bump in the city streets, but we finally got to the nursing home. When you walk in it looks nice enough, hardwood floors and flowers, then we get off on the 3rd floor. The smell of urine and dust enveloped my sinuses. As we wheeled Daddy around to his room, there were elderly people just sitting in the hallway in their wheelchairs, looking into oblivion, sitting in their own filth. I was praying that Daddy couldn't see all the horror from up on the stretcher. The transport workers slid Daddy onto his new bed, his feet hung off the bed, and only one elbow fit comfortably. I remember thinking, at least there's cable.


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Post Op

Haven't blogged in a while, took off for my birthday. But here we go...

When Daddy came out from the anesthesia, he still had the breathing tube in because he was not taking in enough oxygen. He has sleep apnea, so when he would try to sleep, his oxygen consumption would go down even more since he was on the breathing tube and not using his CPAP machine. So when his oxygen level drops, the monitors in the ICU went crazy with bells and whistles, which of course woke him up!! My cousin Jill came to visit today and sat with us. You could tell the change in Daddy's eyes when he saw her walk in, I love the effect she has on him.




All we could do for days was to wet his lips and hold his hand, then finally the doctors said it was okay for the breathing tube to come out. When my mom told me this, I was at work. After work I called the hospital and got special permission to spend the night in the ICU, something they don't usually allow. I did not like the idea of being in the city at night, and the hospital parking garage is quite disgusting. But I got to the hospital and got my visitor wristband. In the ICU, you have to use a phone outside the unit door to be buzzed in and luckily the nurse that answered knew that I was coming and buzzed me in. Daddy was up watching TV when I walked in, I was so excited for him to be able to communicate with me. I just walked to him and hugged him and I hear an, "I love you my angel," in a deep raspy voice. His "jazzy voice" as we called it lasted a few weeks, I kind of liked it. Anyways, I grabbed a pillow and hospital blanket and dragged the chair over next to Daddy and we fell asleep.


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My 2 Amazing Cousins

During everything that was going on, I had Ken to go home to and lean on and I had Irene to distract me. But the two people who always kept my spirits up were my two cousins, Jill and Kaelin.





Jill is my oldest cousin on my Dad's side. She is one person on this world that can make anyone and everyone laugh. My Daddy sees her and his face lights up. She has the squeaky voice and a thick Long Island accent that I find comforting. I know that I can always count on Jill whenever I need a good laugh or some reassurance.





Kaelin is my oldest cousin on my Momma's side, we grew up together. She is more like an older sister to me than a cousin.





Kaelin is the cousin I turn to when I need rational advice. Kaelin always knows what is best. Kaelin is the daughter of an NYPD officer, my Uncle Kevin. Uncle Kevin has a deeper voice than James Earl Jones and you can feel his voice in your chest before you can hear him. Kaelin and Uncle Kevin have always been very important figures in my life. Kaelin is always there to check on me, even without me knowing sometimes. I am truly blessed to have such a support system.




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