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. 

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. 

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. 

Fair weather friends and unconditional love

I don't know how to tell you what it is like to hear someone you love screaming in pain. I don't know how to tell you what it's like to have someone you think of as one of the most brilliant people you know, no longer be able to carry on a conversation with you. I don't know how to explain seeing sheer terror in their eyes, or the far away look that comes and goes. I can't effectively paint a picture of the helpless feelings, the frustration, the sadness, the anger... I have no idea how to make you understand the ups and downs, being afraid to be too happy on the good days, and trying not to lose hope on the bad days. 

I can tell you that a lot of people are to thank for keeping me upright. I also know that a lot of people give me too much credit. Giving me compliments that they admire my strength and what I am doing. I am not the strong one here. The person who is fighting the battle for life is the strong one. I am merely an advocate and a cheerleader, doing what I do out of love. I have heard some stories of families who walk away. I can't imagine that. That is not who I am. But I can say it's not easy to watch this. It is even harder for the person who is going through it, and many days I wish it were me instead. The good person is suffering, the wrong person. He is surrounded by love and people who are doing for him, but people need to realize what a fighter he is. So if people say I am the reason he is still going, I appreciate that, but it's a team effort. 

I have no desire to talk right now. We have 4 assigned social workers, I have a psychologist and a psychiatrist, as well as an electrophysiologist, a hematologist, nurse friends, and the brigade surgeon looking out for our mental and physcial health. I get out what needs to get out and we move on. I have caring friends and family. The phone doesn't stop, but right now I am ignoring it. Not because I don't love each and every one of you, but because I am exhausted. Explaining and answering has become too much because things are day by day.  

Things have changed. The Major has finally been assigned to a different unit who has been present in overwhelming numbers since he got readmitted on Tuesday. I have met so many people and have so many business cards...and they don't just show up and leave. They keep coming, they sit outside until early hours of the morning, and then come back. The best part is, they were like instant family. They are loving and kind and upbeat. They have already done so much for us, as well as the Major's family. Things I didn't know to ask for, things I didn't know were possible. I have a huge weight lifted off, and I am finally able to start caring for myself a little. 

The reason this is so important to me is this: I know I have worn people out. I know that people forget to overlook my attitude, that things I say might be from an anger and fear so deep I can't often stop it. People will say "I have no idea how you do it", or "I can't imagine what you're going through", but turn around and use the weakness of lashing out against you. Taking it personally. Turning away from you, because it's not worth it to them to stick around for the person they knew to come back. When you start speaking up for yourself some are taken aback and get offended, when all you are trying to do is be honest. I rarely handle my daughter with kid gloves, so why would I do it for grown people? I realize I can be hard to take, and even harder to love, but I do give my all to those who stick around. 

I guess to sum things up, right now, things are bad. The Major has been in decline for a few weeks, but it has hit scary level again. If anyone can fight back when it looks bad, he can, as he has time and time again. It goes back to the scared to be too hopeful and happy and scared to give up thing. You just wait and try not to react too much to a change for the worse or better. 

To the people who have put their lives on hold, who have traveled distances to help out, have sat for hours just to be here, who have stayed up late nights to chat, or listening on the phone, taken care of the dog or the Tink, brought food and Starbucks, and sent love via text, email or FB message,  sent cards or packages, THANK YOU!  To the nurses who have become family and go above and beyond for every patient they have, there is no way to ever repay you, but know you are forever in our hearts and have our eternal gratitude. I have felt like a gameshow winner this week, almost collapsing and weeping from all of the generosity of the people here, from our friends and family. What a load off, burdens lifted, and my focus is able to be where it needs to be. 

It has been suggested to me to assign a point of contact for people who would like updates more than I am able to give them, and once that is done, I will let you know on Facebook. That way whoever wants to add their email address can. Please know I appreciate all of the concern and prayers, but sometimes I don't have the strength to talk about what is going on. I do think the people who care and are praying deserve to know how we are doing though, so this is my reasoning for having someone help me out. I don't like to ask for help. I actually hate it. In the past few weeks I have started accepting it though. 

So thank you to those who let it roll off your back when things aren't good. Thank you for not making me beg for forgiveness. Thank you for being there even if we don't talk for long periods of time. And thank you for remembering the me that I really am, not the person who is going through one of the most devastating times in her life and doesn't always deal with it with grace. If there is a time that I can return the favor, please know I will not hesitate to be where I am needed. 

<3

Nothing in this world will ever break my heart again...

"I'm standing strong

but I'm still on my knees praying

That nothing in this world

will ever break my heart again

Nothing in this world

will ever break my heart again

No pain this life will put me through

will ever, ever hurt

like you"

~Hayden Panettiere

I heard this song on the finale of Nashville. I broke down crying. I have stopped communicating with a lot of you, and for that I apologize. I have turned inward since the Major's last hospital stay. Taking care of him is something I will never complain about. It isn't something that I feel burdened with. But it is something that is tearing my heart into a million pieces. The thing is I don't want pity, and neither does he. We are so grateful for the love and support our friends and family have and keep showing. But there seem to be no words left for us to say.

During the last stay in the hospital the Major's medications were changed. Mostly his seizure medications, although he has more for pain now as well. These changes came about because of uncontrolled seizures and an increase in pain. We also found out there is a collapsed bronchial tube caused by a tumor in his lung. This brought on the need for constant oxygen. The medications have changed the man I have known for 15 years. He is someone who can't carry on a conversation like before. He is easily confused and sleeps most of the time. Although I am missing my daughter like crazy, I believe it is better for her to be spending her summer with her grandparents and cousins, away from all of this pain and suffering. Some people might argue that she needs as much time with her daddy as she can get, but I can tell you that the time right now is so full of struggle and pain that I would rather she didn't remember that.

I have sunken into music, much like the song above. It is so quiet in this house and there are times I can't stand it. I enjoy being able to read and have some peace, but some times my thoughts are too loud and overwhelming and I want to drown them out. I don't believe it can be explained how it feels to live out a life you chose, you planned on, and were enjoying...and then suddenly it stops. In the matter of a year we have gone from a very active Army family who could pack up a house and get ready for a deployment or temporary duty assignment with little notice and no complaint - to one who only knows cancer, hospital procedures, ER protocols, medical equipment and more terminology and pharmacology than I have learned in 10 years as an EMT. I understand that life changes. We adapt very well as a family. But this is not something you are told to prepare for at 27.

There are a lot of people who say "don't give up hope"...and I don't think that you understand. It's not about giving up hope. As angry and as bitter as I get, there is still that little voice inside me saying "there's always a chance until there isn't". The reality I live in is this: I have a 37 year old husband who has stage IV melanoma and has been fighting it for over a year. He is rapidly losing weight and seeing more complications as time goes on. He faces them bravely and without complaining. He is tired. He is fragile. He knows what is happening to his body. We have a 4 year old daughter that I must prepare, but with her childlike faith, she comforts me instead saying things like "Don't worry Mommy, Daddy will live with Jesus and we'll see him again". She is my strength and I am more than thankful for her. I must decide where to settle. I must let go of the plan that we had. I have to make up a new one. From scratch. I wasn't ready to decide where I wanted to settle, for rushing back into school to find a new career...one that will be adaptable to being a single parent, or for looking down the road and only being uncertain.

There are dark places your mind goes when you live with something like this. People don't like to hear about the thoughts you have. They want to tell you to forget them, it will all be ok. Just keep positive. There is a reason that doesn't help. That is no outlet for someone forced to live in a reality that may not be so pretty, so positive, so miraculous. And what I would like to tell anyone who may be going through the same thing is this: It is ok to have those thoughts, to be sad, to be angry, to cry. It is ok to not be strong all of the time. People ask how in the world you can be so strong, and sometimes I would like to ask "What would you think if I wasn't?"I think a lot of the outward strength has a lot to do with other people, the ones we are caring for, and maybe even our children. I have learned that I can keep going without feeling only so long. I can push through and refuse to face the heartache, but eventually I am forced to stop, and then I am overwhelmed with fear and pain. If I let myself deal with my feelings on a daily basis, it is easier to keep them in check.

Lastly, a few weeks ago I attended the memorial service of a wonderful friend from high school. What I remember most about the time we spent together is the very best year, the very best friends, the very best experiences of my whole high school career. He had a very serious form of brain cancer and it took him from his beautiful wife and three young children. I sat with one of my sweetest friends and cried. I cried for the woman who stood and was the perfect example of what God's grace can do, for her children, for their families...and selfishly for myself, for my husband, and for my daughter. It was like looking into what I am told my future will be. My very sweet friend sang this song, and then came back and held me as I sobbed.

In a few minutes I will count out medications, check the water in the humidifier of the oxygen concentrator, and make sure the Major is comfortable for the night. I might make a few laps around a too big, empty house to see what chores may be done tomorrow, and then figure out how to pass the time until sleep comes. 

Thank you dear friends. Thank you for your love, your prayers, your messages, your texts, your calls, and surprises in the mail. As angry and confused as I may get about the road life is leading me down, I can honestly say I am thankful that it has put each one of you on a crossing path.