Sunday, February 2, 2014

Emotion

"Pull it together"...when he said it, I wasn't so surprised by the harshness of the words, or that they came out of this particular mouth, but that I might appear as if I didn't have "it" together. I thought I did. What does one expect when you make light of cancer, knowing my situation, how fresh the wound is...even if you have lost both parents to cancer, it still doesn't mean you understand what I have gone through. Of course my jaw will clench, my face will get red, and if I am pushed more, the fire will fly. As the argument ensued I realized that the problem was not mine, but his not wanting to deal with emotion. I told him that I could be a cold hearted bitch with no feelings if that's what he wanted. The response was clear "Why don't you try that then?"

We sat in silence on the ride back to my car, the would be lunch date went bad before it had started. The realization that I was looked upon as weak because I had emotions had soured any appetite I had for food, conversation, and at the moment even friendship.

Don't misunderstand. I have heard many versions of the statement in my short life. It hasn't always come from men either. Women who were jaded and cynical from the career field we are in pushed me to the brink of tears many times until finally I had grown a tougher skin. You can't get away with freezing on the job because something gets you emotional. You can't allow your heart to get in front of your head. You have to be caring without caring too much. This isn't a new concept for me. However, just as I was able to leave my troubles at the door when I came home, I was able to leave that person behind when dealing with people I loved and cared about as well. 

When I became a military wife the sentiment was the same when my husband dealt with his soldiers. "Lock it up" was the term I got used to hearing. The one thing I appreciated was he never used that mentality on me. Never forced me to be someone I wasn't. He knew that although I can be a very rational and level headed person, there's still a part of me that needs to be emotional too. I asked him once, what was so wrong with emotion? Didn't that go hand in hand with passion? Didn't passion drive people? He could only say that emotion got in the way of rationale. Good decisions weren't based on emotion. Again, the wonderful man I married never tried to force away my emotions unless he was trying to get me to see something important that my heart wouldn't let me see. I was always wrapped up in his love no matter what, so even if I felt offended I knew it came from a loving place. 

That's a lot of what I miss now. The feeling of safety. Not in a physical sense, I'm a packin' mama and I'll scratch your eyes out with my bare hands if you try to hurt me or my daughter. No, I miss the safety of knowing no matter what the world thought of me, there was always that other soul on my side. No matter what I thought of myself, he was always going to see me in a better light. 

I get that some people don't like emotion, mostly bad emotions...and there are some people who look down on those who show none. My problem is, I don't understand why people can't look past their own way of dealing with something and just be supportive. Why is it so hard to not make something about yourself? There is no benefit to telling someone they are wrong for crying, or not crying, for screaming or holding everything inside. Just be there if you care about a person. Most of the time the one dealing with the pain isn't looking for words anyway. I'm not looking for understanding or pity. I would never want someone to understand what I'm going through because I wouldn't wish this on anyone else. I just look for those who say "I've got your back" or "I'm here". Those are the people I can relax in front of. Someone asking me when I'm going to get over it, not understanding that I never will, is someone I don't need. As much as that would just be the easy thing to say, and then walk away...I couldn't help turning to look back while walking to my car wondering "what if he needs me?"

Monday, December 16, 2013

He's gone.

Once in a while the flood gates will open. Like my tears have been held in a dam that finally bursts and all at once has a never ending supply. I'll walk around the empty house looking at things, trying to remember the memory that goes with them. I'll pick up the blanket that I refuse to wash that he was covered with the day he passed away and just hold it. Wishing he would just talk to me one more time. I think of things I should have said or did. I get so angry for letting myself show the weariness I felt. Like if I had just hidden it better he might not have felt like he had to let go. 

Most days I'm ok. Most days I am thankful for all that we have. I have a beautiful daughter and will be able to continue to take care of her. I have family and friends who keep me going. And I promised to do more with my life than just settle into something comfortable and easy. In two days it will have been a month. 4 weeks. I have been in this fog for 4 weeks. No matter what you think, being prepared for it doesn't make it any easier. There is never enough time. There are always things left unsaid and undone.

Videos and pictures make me question the reality of it. He was just here. He was alive and we had a life. A perfect life. Everything was set for a wonderful future. There were plans and dreams and things to do. And now he's just gone? I sat there. I watched. I held his hand. I kissed his lips and his forehead and watched his pulse stop. I screamed like it would bring him back. Like I could call him back into his body and tell him I'm not ready to let go yet. I sat for 5 hours with him until they came to get the body that was left. Now I just stare at that chair in the living room that I always had to have so perfect. I remember buying the chair because we could both fit in it together and watch tv. Sometimes I feel like there should be a rope across the entry like a museum because I am barely able to set foot in the room.

I don't know how to do without a man who was so perfect for me in every way, that no one will ever measure up to, whom I was lucky enough to have. There are only distractions to get through every day, but in the quiet moments I just want to feel him again. There will never be any substitute or anything comparable to someone who loved me so completely and honestly. I never had to beg him to love me, to choose me, to put me before anything or anyone else. He chose to do that. And I in turn did that for him. To be this young, having to let go of that once in a life time occurrence is something I will never get over. 

Tuesday, October 15, 2013

Hate

It comes in the most unexpected moments. I'll be having a great day, ok maybe not great, but good...and then there it is. Hate. Pure, bitter tasting, unrelenting hate. I know people who will judge and say "you can't live with hate in your heart" or use some Bible verse to tell me how wrong I am for allowing it to fester. But the truth is, no one has the right to say anything. No one person has the right to judge or say they would do it better. Unless you're reading this knowing exactly what this life is like, knowing in your heart it could have been prevented if only people weren't so careless in their jobs...if only people looked out for one another instead of pretending not to see the signs of a deadly illness. Possibly only because my husband was good at his job. Possibly because it was too much work to process the information and find a replacement "down range". And even before that, because they were too lazy or stupid to know the answer before it spread.  You have no idea where my hate comes from. What it is to only have room for one little human being that you and the love of your life have created together. The only piece you will have left when this awful disease finally has the last word.You have no idea where my hate comes from. You have no right to judge a hardened heart. So lashing out may not be classy or right, but some days...some days people ask for it. 


Once in a while a friend will ask "what are you doing for yourself?" There isn't much except retail therapy and filling up my Nook with novels to escape my every day life while the Tink is at school and the Major rests. One constant is getting my hair done about every 6 or 8 weeks. It's a totally mindless activity, done for the pure enjoyment of something new and someone massaging my scalp until I'm all but asleep. This time I had decided to get bright burgundy highlights to change it up a bit. Something different not done in vanity, to fit in, or to please anyone but myself. I look forward to my salon time. I don't like to talk, but I will engage in conversation that has little or no meaning. Usually the topic of why I'm living in this area comes up and ultimately results in me explaining about the cancer. The need to leave our assignment in Alaska quickly and get to a place with better health care. Last night was no different. I hate having to say it. I hate the word terminal. I hate the look, the pity look. I see it every time...the person scrambles for something to say, but the only thing anyone can ever come up with is "I'm so sorry". Yeah, so am I. Usually after that we talk about our kids or the weather or this crazy city. Restaurants or activities. 

It seemed my stylist had not known what she was doing when she was mixing the highlights. As she was blow drying my hair, I heard her say "Well, this is more purple than I had intended..." I put on my glasses thinking, maybe it's maroon. Nope. Purple. And not the pretty dark purple I used to have in my hair...a more bright cotton candy version of the color, with some hints of pink. She continued blow drying while I sat staring and she stated how pretty it was anyway, and once it faded I could come back and she would make it red for free. Stunned, tears sprang to my eyes and I told her to stop. Seeing how upset I was she asked what was wrong. As I explained I didn't care how pretty she thought it was, it wasn't red, she promised to fix it. The Major's favorite color is red and I was really looking forward to seeing his face when I surprised him with the change. This meant me sitting in the salon for another 2 and a half hours. Of course she had other clients to tend to. I sat in the freezing cold shop with wet hair while she chatted up her other clients. If this mishap hadn't happened, if it had been done the right way the first time, I never would have heard the thing that made my skin crawl, and my heart ache. I wouldn't be sitting here questioning how in the world I'm going to keep my child from thinking the way some people do. 

Once I was back in the chair, having my now beautiful espresso hair with red peekaboos blown dry I was right in the middle of a conversation between the stylist and her friend, also having her hair done by the person drying my hair. The one who screwed up my hair in the first place. The one who pretended to care when she found out my husband had a terminal cancer that anyone, any age can get. All of a sudden the conversation turned to tanning, and how she wouldn't use ProActiv because she couldn't lay out without getting a sunburn on her face. That she "didn't want to be one of those poor, ugly Albino looking people with pale skin walking around with an umbrella". Here comes my friend "hate". Rising up out of me like a protective snake, ready to take down any source of pain. I looked her square in the eye and said "I guess that's what you would think of me and my daughter then? Ugly albino people? People who are now extremely careful in the sun because my husband is dying from a cancer caused by UV rays, and he never tanned a day in his life." She went silent. I didn't try to hide the rage on my face. 

Is this what my daughter is going to hear in school? No matter how many times I tell her how beautiful she is, no matter what happens to her father, no matter how much proof I have that pale skin is beautiful skin, it is no match for the words of petty, self-obsessed little snotty brats who go around making others feel bad about themselves. This I know from experience. I know what I'm up against having a daughter. Other daughters. Girls who will make it their job to tell anyone who doesn't look like them that they are ugly, fat, pale, and different.

 I hate thinking of doing it alone. Tackling all the problems we're going to face. Problem solving and convincing a beautiful little girl that she is just that...inside and out. When you think about starting a new life it's supposed to be happy. There is supposed to be hope. Not dread. Not anguish. Maybe a little dose of a positive fear that propels you forward, but not one that has you frozen in place wondering which way to go next.

I've learned from past experiences. I've taken heartbreak and turned it into fuel. The only person on this earth who can save you is yourself. The only instinct I have that is stronger than self preservation is that to protect my child. I keep the negative shoved down, kept at bay by the happiness that comes from seeing my child enjoy things, from having her near, from every single day we get as a family of three right now. That happiness balances out everything else and makes for the hurt to just be numb. But last night, in a rare moment, someone was able to knock me out of that security. Like when someone asks me how my day is and instead of complaining, I say "Ok, how is yours?", and they start rambling on about how dreadful their Monday is because of whatever minuscule inconvenience has come their way...some days I am able to smile and reply with how sorry I am, and hope their day gets better. Some days I look them square in the eye and say "My husband has terminal cancer and he's only 37." Just as I tell the Major he's only allowed to pull "the cancer card" once a day, I am only allowed to use it in extreme cases...some days I do admit there's a part of me that gets some joy out of them realizing the fact that their lunch hour was cut short by a few minutes, or had to do some extra work is nothing compared to being told you won't see your daughter graduate high school, and probably not even kindergarten. Yeah, I'm a total vindictive bitch, right? Oh well. I can live with that. I'm actually pretty open about it. Warning anyone who gets close to me what lies beneath the caring and giving person who will do anything for you until you cross them. Until you push too far.

No it's not right to project onto other people. It's not right to unleash a fire that was set by someone or something else. But there it is anyway. Like I said, self preservation. Turning the other cheek is great until you've been slapped so many times that you finally duck and come back with your own right hook.

The people who know and love me will not think anything of this silly little rant. Those who are horrified, well, you've gotten a glimpse of someone's heart who has had their hopes and dreams torn away by uncontrollable circumstances. Someone who has been knocked down and keeps getting up, and you ask them how they do it. It's doesn't come without a price, not giving up. 



Tuesday, September 17, 2013

Being thankful

I admit there are a lot of moments throughout my days when I just can't help but wonder why this horrible thing had to happen to my husband. I look at our wedding photo from almost 8 years ago and remember the only thing I was scared of happening to him on that day was him being deployed. Never saw this coming. I get furious. I get sad. I get bitter. I don't spend my entire day in self pity or dwelling on anger, but it's definitely there from time to time.

Yesterday as the events unfolded at the Navy Yard in Southeast, I was preparing to drive back to the hospital. I was extremely sad for the people who were going through it, and also scared I wouldn't be able to get back to the Major. Thankfully I was met with only heightened security, which made me feel safe, not annoyed. Although yesterday turned out to be a very bad day for the Major, he was unconscious most of the day and multiple tests had to be done to rule out specific things that could be fixed...I was thankful. Thankful that I get to sit with him, thankful that I get to give him sips of water or chips of ice...thankful for the amazing nurses and staff here. I was and am thankful for the family we have made here, for advances in medicine that have gotten us more time than was expected. I was thankful this morning to wake up to the Major being a little better after some antibiotics, thankful for a friend helping with the Tink and housework so I could stay here. Thankful every time the Major opened his eyes, thankful every time he was able to answer a question. I was extra thankful for the visitors we had today, military and civilian. I made sure to let people know how thankful I was for them. I sat in a chair today and focused on all I have to be thankful for. Instead of being negative and looking at how awful things are right now, I picked out the good things. 

People can be taken from us in an instant. Loved ones can go to work and never return. I am so sad for the families of the victims of the shooting yesterday. I am sad for the Navy Community. I am sad for our military community, as we are shaken...just as in the days after the Ft. Hood shooting, our bases are scrutinized, our gun laws are picked apart, and our sense of security is no longer what it was. 

Right here, right now, in this moment, I have the Major and Little Tink. Things aren't perfect, far from it, but they are here. One day things might change, but today I can be thankful. Today I can hug them. I can be thankful for time, for friends, for family, for medicine, for our military, and that no matter what, I get the chance to hold his hand. 

<3

Monday, August 26, 2013

Drama Queen?

Cyanosis, Pitting Edema, Ischemia, Pulmonary Embolism, Deep Vein Thrombosis, Metastatic, Aphasia, Necrosis, Bronchial tube, Subungual Melanoma...these are just a few terms that pertain to the Major's diagnosis and disease. All of these words (except the Subungual) are words I knew from the field. They are words that have been used in many trip sheets (reports done after EVERY SINGLE call we go on to document EVERY SINGLE complaint or issue with the patient, as well as everything that happened and every intervention we used) in my career. I am NOT a doctor, I am NOT a nurse, and I don't claim to be. I do not believe I have all the answers or know all medical things. I do not believe I have seen everything. 

I have been married to the Major for 7 years. I have known him A LOT LONGER. I do not know how long he has, just as I don't know how many days I have, or any of you have. I never claim to. I do know he is very sick. I do know his body is worn down. I do know there is no cure for stage IV metastatic melanoma. I do know he is not eligible for any other medical treatments. Two weeks ago when I brought him into the ER, he was screaming in pain from a growing tumor in his lung, crushing a bronchial tube and pushing into his ribs. He was gasping for air, unable to speak, walk or stay awake. There was more swelling in his brain. Blood clots forming around the tumors. And the wonderful people here are SO GOOD AT THEIR JOB that they were able to work together to get him comfortable over the course of a week and a half. 

I have been questioned about the recent change in the Major's appearance. He is talking more, but still unable to get a lot of words and sentences out. He is comprehending more and staying awake more and out of pain due to a thoracic epidural, less narcotic pain medication, and a high dose of steroids treating the swelling in his brain. He is on round the clock alternating anti-nausea medications so he can eat if he thinks of something he might like. With help he is able to stand to go to the bathroom. I have all but been accused of being a drama queen, making his condition seem worse than it is for the sake of attention. 

So back to the first part of my post. I am not the medical know all genius, but I do know my husband. I do know medicine. I do know signs and symptoms and prognosis. I do see what is better in him, and appreciate the fact that for the most part I am able to converse with him again. I ALSO know that nothing in his body has changed. The cancer has not shrunk or gotten better. The tumors are still present and growing, not responding to treatment. Melanoma does not grow in the blood stream, but it does suck up a person's blood supply. It is also a "bleeding cancer", meaning at any moment, for no reason at all, it can bleed from any source. A brain lesion, a stomach tumor, a lung tumor, or his toe can start bleeding at any moment. He is on a very small dose of preventative blood thinner because of his history of blood clots (also a side effect of cancer), and because of this he is at a higher risk. There is no perfection in the game of cancer. Treatment is not cut and dry for every single case, every single patient. So there are benefits and risks of everything they do for the Major. One medication or therapy may help one thing and cause something else to get worse, it is just a matter of weighing which you would rather have. 

I know there are certain people who look at me as if I have no hope. People that get to lay in bed with their spouses at night. People who visit when they remember, or get to walk away healthy and not worry about every single hour, every single medication, shakes and chills, colors of fluids, schedules of medicines, which ones work better for which symptoms...they don't wake up in the middle of the night terrified of what they will find when they look beside them because they had the same nightmare for the thousandth time. A nightmare that they know is coming. 

And here is where my faith is questioned. Questioned and judged by people who have absolutely no right. If you want to say you are something, then be it. Own yourself. Own your actions, your attitude and your life. I own mine. I don't push medical fact onto people. I am a provider who has always believed I work with God. That God gives us the knowledge of modern medicine, but at the end of the day, His will is done. I don't try to argue that. I don't stop cheering my husband on. I believe if anyone can keep going, he can. But I also stand by him if he tells me he is too tired to fight. I will not go anywhere, no matter what. I support him, no matter what. If he wants to do radiation and go through more painful treatments, I will do what I can to make him comfortable. If he wants to enjoy pain free days and laugh as much as possible without any more treatment, I will sit here and hold his hand. I don't get to forget about this. For one second of any day. And the more people who choose not to support what Little Tink and I are going through, the more people who leave us alone to plan for the future, the more people who walk away from us, the less likely I am to include people in our future. If you can't understand the line I have to walk, really that any military family has to walk, then don't say anything. Yes I get that you pray for miracles, and we are both very thankful for the prayers. Some times there are things that happen that we can't understand. I can't imagine the pain these people: https://www.facebook.com/Addisons.Army are going through. This little girl contracted melanoma in her mother's womb and recently passed away. Not because she wasn't deserving of a miracle, not because God didn't love her, not because she was a sinner...but because sometimes awful things happen and we won't know why until we end up with our Creator. 

So I just ask for understanding. And if you can't understand where I am coming from then just keep your snide remarks and sarcastic comments and condescending thoughts to yourself. 

Wednesday, August 21, 2013

There are no longer just ordinary days.

Last night was terrible. It was the second night in a row the Major woke up in a confused and panicked state. He is not himself when this happens, these episodes are caused by the brain lesions. Last night was the worst. He has no idea where he is or why there are things stuck in him. As an EMT my instinct is to not let the patient harm themselves. Yes, he is my husband, but he is also very ill and the same rules apply. I would never want to see him hurt. So as he tries to rip at his IV and his catheter, I take his hands, very calmly and lovingly and try to calm him. At this point the confusion builds and causes rage. I push the button for help and our wonderful nursing team came running. By that time the Major had a death grip on my wrist (which is very tiny) and it took two people to pry his fingers off as I cried out in pain. I know he would NEVER, EVER hurt me, or anyone else, unless defending myself or my daughter, or fighting for our country and was given an order. I was angry at the cancer. I was angry at life for doing this to such a smart and wonderful man. For stealing our life.  

Tonight I'm lying here on my semi comfortable sofa bed that is pulled up beside the hospital bed, thinking. I have no idea how to even process this day. Living in a hospital is just plain weird. I have never felt out of place or not at home or anything...I grew up going to the hospital where my mom worked as a respiratory therapist and loved going around exploring. I guess that's why my brother and I both became EMT's...it was just comfortable and natural to us. However, to say I have errands to run, and having them all be within the hospital is weird. Right? I have a post office downstairs, a mall across the parking lot, all of my doctors in the same hospital, and the Major's unit spread out over the campus. I love the convenience, I'm not complaining. I just thought as I showered in the Major's bathroom and did my make up between doctors and nurses coming in, how normal it has become.

So I make my way around to the different places I need to make appointments with and only have luck with one. As soon as the first thing didn't work out, I could feel my resolve weakening. Some days I can get up with determination and not let any road block stop me or get me down. Today was a day that everything that didn't work out just added to my sadness. From not being able to get an appointment for the Tink's pre-K physical to the post office being closed for lunch when I finally got there. I should have skipped going to the starbucks at the Warrior Cafe, but the only calories I had all morning/afternoon were in that frappuccino and I probably would have collapsed without it. 

There is also no partner to help with the things I need to get done. The Major is unable to communicate clearly with his words and has trouble comprehending. Some days are decent in the morning, but he has been getting worse every day. I have been alone to pay the bills and take care of things during deployments and such, but it's odd seeing him and not being able to ask him if I am doing everything right. I am trying to hide the fear that is so constant. I am trying to make him proud and let him know I can do it, that I will do it. 

Today we were visited by two of the therapy dogs. One is a german shepherd who has the most awesome mom. The other is a lab mix who specializes in recognizing depression. He takes his leash from his handler when he senses something. As he trotted toward me in the hallway today, I was finishing up a phone conversation with my psychiatrist's office...no I am not ashamed to say that through all of this I need a psychiatrist and psychologist as well as medication. After wonderful puppy kisses, he turned to his handler and took his leash. He dropped it before he turned back to me, but the handler saw that he sensed something. Such a smart and wonderful creature...the dog. It made me miss the lump of chocolate we call Mason, who is staying with my mom right now. 

This evening the Major's awesome oncologist came to visit. He is so amazing with the Major and even Little Tink. She loves him because he is so silly with her. After some general catching up the Major wanted to have the hard conversation with him. We cleared out of the room so he could be alone with his doctor. After a few minutes I was called back in. I knew exactly what my husband was wanting to know. As any physician will tell you, they have no crystal ball. There is no exact science to predicting time. He respects the Major enough to give him his estimate though and when he said 7-14 days I wasn't surprised. Don't misunderstand, I still felt the devastation and shock. Even as honest as we have been with ourselves about knowing we were just fighting for more time, I still believed deep down there could be a cure. That if anyone could keep fighting and get up and walk out of here again, it would be my Major. I held it together because it was his moment to be angry, sad, scared, lost, and every other emotion he must have been feeling. I also have a little girl who was waiting outside the door and until all of the right people come together to talk to her, we will keep the estimate of days out of her earshot. She is here every day, happy to see her daddy. Spending time with him. Not afraid to get up and kiss him, hug him, tell him to stop picking at his nasal cannula...he's just Daddy to her. Not a sick person, not weak or different. 

After the room is quiet for the night and I'm lying here as the Major drifts in and out of sleep, I get frustrated because he tries to tell me things, but the words don't make sense. For the past 3 weeks I have just wanted to have a conversation with him. I am seeing the same eyes, the same smile, hearing the same voice, but part of my husband is gone. I want to punch through walls and rip things to shreds. I want to scream and yell and throw anything that isn't nailed down. It was an overnight change that I wasn't ready for, and finding out it won't resolve just about kills me. Seeing him struggle with his iPhone or seeing things that aren't there, feeling like we are speaking two differently languages but desperately want to talk to each other, is unbearable. 

There is nothing else I can do right now except be here. I am grateful for the opportunity. Some people don't get to hold the hand of a loved one in their last days, in their last moments. There is no way to escape this pain. I have to live it, experience it. Some day I will learn how to live with it. I just know that this is a hole in my heart that will never be filled. 

Sunday, August 18, 2013

Cold

When sad things happen, sad to the point of feeling devastated and empty, I get this complete cold sensation from the inside out. My doctor swears there is no correlation between coldness and sadness, but I don't believe that. Today someone I counted on and trusted, someone I leaned on and who made dreary days brighter informed me they had enough. A back was turned on me and I felt as though I were standing alone in the middle of nowhere, with my pathetic self sobbing and begging and no one could hear me. 

There are temporary fixes for the coldness. A hot shower, sitting in the sunlight, a warm mug of tea. But the heartache from what is life right now doesn't stop hurting and the coldness creeps back in. 

The hard shell of a person that the Major somehow softened and made into a loving, giving, compassionate wife and mother is wanting to come back. Protect my heart at all cost from anyone and everyone. Little Tink will never have to deal with my hardened heart, as she is the only ray of sunlight. The major's good days also make me smile. And it seems he is the only person who will ever have found that person in me. Others chose to ruin it. And no one else is worth keeping it around for. No one else is worth trusting. Not anyone who doesn't already have my love and trust any way. 

It's a hard thing to write when you feel like your heart is being ruined. Physically and emotionally. Don't hate me too much for this post. I just need some of the bitterness to come out of my head.