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. 

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. 

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

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. 

Moving forward.

There is a time in high school I remember very clearly. When you start filling out applications for different colleges and universities...trying to figure out what you are going to do with your life because the simplicity of childhood is almost over. There was pressure and it was a little scary, but mostly exciting.

I was accepted to a wonderful private college, going into their respiratory therapy program. I ended up dropping out after figuring out EMS is what I wanted to do full time. Things clicked and I loved my life. I was feeling ready for paramedic school, and then things changed again. I accepted a marriage proposal from the man I had been waiting for, the man I was in love with since I was 15. Life became about us, not me. I worked and volunteered, living a crazy military lifestyle. Then we decided to have a baby. Deployments and TDY's, PCS's and experiences came and went. I became the type of person who got restless staying in one place more than a year or two. I was content doing EMS when I could, being a stay at home mom and taking care of my family.

Now here we are and I feel like I am back to that same time in high school. Only this time there is no excitement. There is no feeling of the world waiting for me. There is only sadness at the thought of the life we had built and were building, ending. The dream retirement home in Charleston, SC has now turned into planning for a modest home in PA that Tink and I would be comfortable in. Going back to where I was raised, spent 20 years wanting to get away from, and did, now is the only place that seems practical. With my health issues and a child to put first, my dreams are now different. If you can call them dreams.

Making sure Tink gets the best opportunities available, making sure she has family near, keeping her happy and healthy, providing a life in a safe place for her to grow and learn. It has not been about me, or us, since she was born, but we always made her fit into our life, and now I feel as though she will be the only thing I have to focus on.

Don't get me wrong, I know at 27 my life isn't over to people looking in from the outside. Thanks to the Major I have many options for education. Thanks to loyal friends, co-workers and bosses, I have a place to work. I have people I know will be there. But to be 27 and thinking about starting all over, to think I may have had the best experiences I will ever have in the last 7 years, isn't exactly up-lifting. I am very thankful for the things I have done and seen that some people will never do or see. Because of our life, we have many exciting stories and memories. It's hard to let go of, the life you saw for yourself and your family. The worst thing that was supposed to happen was us getting a really crappy assignment like Folk Polk, LA, Fort Bragg, NC or Fort Irwin, CA. The ones you scream "no no no!! and beg your husband to change his MOS to avoid when they come up on your list. Now I would go anywhere to avoid what is happening. I wouldn't complain about a deployment or a field exercise. I wouldn't get angry at the muddy boot prints or smelly gym bag in the kitchen.

The Major is able to get into his uniform and go to post with me about once a week and I think, there is no way that man has terminal cancer. There is no way he could have been told he was going to die 3 times now. He should be at work. We should be in Seattle right now, him working for the new Division and me volunteering with an ambulance in Tacoma. We should be exploring and hiking, swimming and biking. And yet, there I was just a few days ago, crying as I signed papers to put an offer on land. It was so ridiculous. Some people don't get the opportunity to buy land and start from scratch, and my husband has provided a very good life for us. Even if it wasn't what we had envisioned, he is still making sure we are taken care of. So I realize I may seem like a person who isn't happy with anything, but that isn't the case. It's letting go of what I thought was supposed to be. It's feeling like I am being exiled back to a place that I never wanted to settle in. To those of you living there, it is not a slam on you or the area, I simply do not feel at home there. To me, it is taking the easy way out in my situation. If it weren't for fear of my illnesses leaving Savannah with sitters and strangers until family could reach her, I would love to take us somewhere new. If we can make it together in Alaska, she and I can do anything.

To end this post I should focus on something positive. I know what I am coming back to, and I know I will overcome the negativity because of it. I want my child raised as I was. Where God is still talked about in school, where people take your word with a handshake, neighbors don't watch you struggle with something, they walk right into your yard and help. People may not keep to themselves, but that isn't always a bad thing. I have friends whom I would trust with my life, whom I have trusted with family members' lives. I may be a different person than when I left, but I promise I have not forgotten where I came from. I am still the girl who would do anything for you or your family. I am still the person you can call in the middle of the night for anything. I can also tell you that is how Tink will be raised. When I shake someone's hand to make a deal and tell them "You know my dad, that is what you get with me", and they smile and nod, I get a great feeling. I want Tink to be able to say that. I want her to have pride in where she comes from and not have to ask for handouts from anyone. So as sad as I may be about losing this military lifestyle, I can be somewhat comfortable knowing we are welcomed back with the open, loving arms of our small community.

A child's view

In our four year old daughter's bedroom there is a beautiful queen sized bed fit for a princess, butterfly pictures, wooden letters spelling out her name that were hand painted by a dear friend, sparkly pink curtains and Strawberry Shortcake decals carefully placed by two little hands. There is a plush rocking horse that whinnies and flicks his tail when you push his ear. There is a book case with fairytales and baby's first books, Dr. Seuss and books about deployment. It is a beautiful safe haven for a little lady. 

I sit writing this in the big comfy round Papasan chair that is in the corner of her playroom. It has a sheer tulle canopy hanging from the ceiling that goes the whole way around it. The room is decorated to look like a Parisian princess's playroom. I love it in here. She makes me things to eat at her kitchen, builds castles with legos, and mixes figures from Toy Story and Tangled when we're playing. 

These two rooms remind me of what she should be focusing on. She should have no weight to carry, no stress on her little heart or mind. She is wonderful at play. She has such a wild imagination and I hope that never goes away. I love the silly things she comes up with, even if other people don't understand what she's talking about, we do. :)

These two rooms are all I can offer though. She now sees extra oxygen cylinders and portable cylinders in Daddy's office. She watches as new medications are introduced and put out of her reach. She listens to phone calls with doctors and nurses and case workers. She sees the hospital bed and hears the whoosh of Daddy's oxygen concentrator at night. She is familiar with the Hospice workers, as well as knowing Daddy's doctors by name. 

She knows her Daddy is sick. We don't lie to our child. She is only four, so we're not in her face about it, but we answer her questions. Tonight was the second night she has said "I don't want Daddy to go to Heaven. If he does, I won't have a Daddy anymore". I thought I had known a broken heart before, but honestly no boy or man has ever really truly broken my heart. A four year old worrying about losing her Daddy did that. She knows quite a bit about Heaven and Jesus. We share our faith with her. We try to guide her little heart as best as we can. She truly does have a childlike faith. She has no doubt of where her Daddy will go if he leaves us, but no little girl wants to lose their hero. Their first love. The strong arms that have always held them tight no matter what. There is nothing I can do to make that better. There are lots of social workers and therapists who offer help. No one can make her feel better about what may happen. It just plain sucks. 

A little girl should be playing My Little Pony and drawing flowers and sunshine. They shouldn't be waking up in the middle of the night crying that they don't want to lose their Daddy. So we pray. We pray that Daddy gets better, that Daddy is no longer sick. She understands his illness in her own way. She knows that Daddy's cancer started in his toe, and for a while he had a constant cough. So she tells people that Daddy has a cough from his toe. She prays that Daddy's cough goes away. I can hold her, and reassure her that we both love her. That every day we have together is special and we should love each other and have fun. I promise her that no matter what, Daddy will always be her Daddy, and she is a lucky little girl because she has the best Daddy in the world. 

My husband feels the pain of her fears. I can only promise him that if something happens, we will do the same things we did for deployments. I know that may sound silly or insensitive, but hear me out. I refuse to let my child forget. During a year long deployment some children become unattached or forgetful of the parent that is gone. There are tons of ways to fight that. A picture in every room. A Daddy doll to talk to when she feels like talking to him. Videos and pictures to watch whenever she wants. Talking about Daddy every day. Letting her voice what she is feeling and giving her an outlet when she is overwhelmed. I'm not a perfect mom. I struggle every day and feel like I'm failing more than not. I can tell you that I love her with all of my heart and it aches knowing what losing her father could do to her. 

We don't dwell on Daddy's sickness. She has questions that pop up and we answer them. Most times she is right back to talking about Disney characters or making up sweet little songs. I try to remember when I was four. I can't say there are a ton of memories. I wonder what she thinks when she is analyzing things I tell her or teach her about what is going on. She is so thoughtful and analytical like her father. I love that. I love that when she is curious, she asks. Tonight she wanted to know about the thing that was making all the noise and the tube in Daddy's nose. A four year old, learning about oxygen and nasal cannulas. Feeling the rush of it coming out of the two prongs and taking everything in that I told her. After the lesson, she was satisfied and snuggled up to him to have her story read. Our new normal. Medical equipment mixed into our daily routine. Her taking it in stride knowing her Daddy is still her Daddy. He's not scary or different, he's just Daddy. I hope for a lot more nights of her crawling into our bed, cuddling between us, feeling safe. I want that for her for as long as possible. To tell the truth, I want that for me as long as possible. 

Tomorrow night, I believe I should tell you a real life fairytale...

Goodnight. 

Boundaries

We have so many sweet friends and family, and we appreciate every single one. I do realize, however that we need to start voicing our wishes and speaking up. This is not meant to be an attack or to say we aren't thankful, just letting people know what we need. 

As an EMT I understand wanting to give advice and offer solutions. I am a proactive person and don't like to just sit around and wait for things to happen. I like options, I like being positive, and I like hoping for the best. This being said, there is also a rational, medical side to my brain. I believe God gives man the knowledge and capability to advance in medicine. I believe we work with God to save lives, and if we don't get the victory, then there is a reason for it. 

Since the Major was diagnosed we have had an outpouring of love, support and prayers. We cannot express how thankful we are for those. We have also been getting emails and letters and messages about tons of different treatments for generic cancer, different diets, herbal cures and holistic healers and hospitals. I am not discounting these. I am not saying they don't work. I do believe people have been helped and I believe we should ALL do better at living a healthier lifestyle. I believe there are worse things in our foods than there used to be. I believe environments have changed and affect our bodies. I believe some people are exposed to things that cause illness. And with that I must continue with the negative. 

We appreciate opinions and others doing research on our behalf. There is a point though that we run into overload. There are so many things being thrown at us, and maybe people don't realize that. And when we don't seem to be taking it as gospel or trying every single thing that is offered, we are viewed as people who give up. People who don't really want to beat this cancer. I must stand firm and say THIS IS NOT THE CASE. Another thing people may not understand is that every type of cancer is different. Every body is different and people react to things differently. The hubby has a toe based melanoma. This was not caused by the sun, but is more to do with environment and genetics. He has been exposed to so much we aren't aware of in the odd countries he has been deployed to. There is no way to know what caused it. What we also know about melanoma is that technically it is not a "curable" disease. That doesn't mean people don't go into remission. Once you get to the point the Major is at - Stage IV Metastatic Melanoma - there is a very low rate of remission and survival. I am NOT saying it isn't possible. I believe in my husband more than anyone. I know what a fighter he is. I know he will never give up. But we are both realistic about what MAY happen. 

A military family walks a fine line of planning for the worst and hoping for the best. So to say we were equipped to deal with this situation is pretty accurate. Just because you may see us using Hospice or stoping chemo treatments doesn't mean we don't believe there may be a better outcome. My husband does not sit on the couch all day and say "Oh poor me". We live. Every day we wake up and breathe, we keep moving. 

Now to the point of what we need. Besides prayers, support and love, we need FRIENDS. We need people to talk about normal things. Reminisce with us, tell us about your life and what is going on. When you are with us, forget about the cancer. The Major is still a person and he still enjoys day to day things. He is still the biggest Yankee fan and is interested in Spring training right now. He still loves talking about current affairs and the military. He is a history buff and is so knowledgable about the Civil War. We aren't cancer experts. We aren't researchers. We don't sit around and talk cancer. Who wants to do that? It hurts me to think this is all people think of my husband now. A man with a horrible disease that may ultimately kill him. How awful must he feel to think that's all people will remember? 

Last night he asked me "What have I really done with my life?" Which tells me he is forgetting all of the ways he has touched peoples' lives. He is focusing on the cancer. This is not what anyone would want for themselves or their loved ones. So I beg of you, call, write, visit - PLEASE! We love you all and welcome you into our home. But PLEASE know there is a living, breathing soul here. He loves and lives and jokes and is still "W". Don't write him off. Don't focus on pity or despair. Remind him of the person he is. Remind me that you are as happy to have wonderful memories of him as I am. 

With all the respect and love I end this blog post. If I have offended, then so be it. I will stand until my last day and fight for my family. And I feel this needs to be said. 

Updates

After the last blog I wrote, telling everyone of the Major's terminal prognosis, I admit I have stayed away from this blog. The funny thing about someone who loves to write is that you always seem to be doing it in your head anyway. I just didn't feel like letting the words come out. Some of you may know that things have taken a turn for the worse. Facebook posts only let you know so much, though. And unfortunately some people seem to be misinformed and I can only blame myself for that. So we'll start from hubby's last appointment with his oncologist....


The Major had been doing well, the weight was coming off from the steroids that he had been on to take the swelling off his brain that was caused by the brain lesions. The brain lesions had responded in a good way to the cyber knife. The lesions in his body seemed to be stable and we were under the impression the Temadur was doing something. The oncologist was pleased and we were given permission to go to Hawaii. A PET scan was scheduled for the day after we arrived home.

Our Christmas present to hubby's parents was taking them along to Oahu. We had lots of things planned, taking the Tink back to Disney Aulani, spending some time in Waikiki, and ending our stay at Turtle Bay. I was so happy to have the Major healthy enough for such a big trip. Things were looking good and we were even planning more trips for when we got home. Disney World, Alabama, Texas, and the Carolinas. We were confident that the trials we found would begin soon after we returned from Hawaii.

Things started out well once we landed in Honolulu. It was as it had been the year before when we were there. People are so sweet and wonderful. The atmosphere is laid back and comfortable. We all took a proverbial sigh of relief being away from doctors and other stressors. In the mornings came fresh fruit, fish and juice. The afternoons were play time and the evenings were exploring and unwinding. The weather was a bit more chilly than it had been the previous year, but it was still better than what we had left on the East coast.

We enjoyed kayaking, playing on the beach, in the ocean, in the pools, going down water slides, whale watching and driving around the island. We were meeting wonderful people and having great experiences. Life was finally good.

We spent 6 days at Disney Aulani. After that we went to Turtle Bay. We chose to stay in the ocean side villas as we did last year. It's something pretty amazing to have world famous waves crashing right outside your door. Having the sound of the surf lull you to sleep at night. Wake up in the morning to go looking for the turtles that come ashore. Heaven. To me, anyway.

I had wrestled with the idea of getting another tattoo in Hawaii. I knew what I wanted, but I wanted some polynesian flare to it, so we made the decision to go for it. Most of you have seen the photo. It is a butterfly above my ankle and the body is a melanoma awareness ribbon. The rest is a polynesian tribal wrapping around my ankle down to the foot and ending with plumeria flowers. The Major sat with me and held my leg because I could not control the nerves in my foot from twitching. It was the most painful tattoo I can imagine, much more so than my first one.

We had plans for sunset horseback riding the next night. This is what I had been waiting for. I love riding. I love horses. I love the beach. I love Pacific sunsets....so again, perfect. The night we got home from getting my tattoo, the Major let me know he was in pain. He had been lifting our daughter that day, playing in the ocean with her and pushing himself. I thought maybe he had pulled a muscle or aggravated a hernia that has still not been repaired after 2 years.

When we went to bed and I could see the pain on his face, I examined his abdomen and found distention and a hard mass. It was in the area of his gall bladder. I wanted to take him to the ER, but he insisted he just wanted to go to sleep and wait until the morning.

The next morning when the Major woke, he couldn't move without the most intense pain. The distention had gotten worse, and I couldn't even palpate his belly without him wanting to scream. I knew I was not going to get him in a car. I called 911. Thankfully the hubby's mom was able to watch little tink and his dad drove the rental car to the hospital.

We were taken to a small, community hospital ER. The people were so kind. The Major's nurse was the sweetest nurse I had ever met. She had a part time job at a local Starbucks and made me coffee and tea the whole time we were there. She gave the Major a hard time (we like that) and treated him like a king. His every need was taken care of and so were ours. Hubby had a CT scan done, and the results showed a mass in his abdomen. This was no surprise since that mass had been there for a while. The doctors wanted him admitted. At that point I chose to have him transferred to Tripler Army Hospital in Honolulu. It is a large facility equipped with up to date machines and lots of staff. Not to mention a built in support system for our whole family.

The Major was transferred from ER to ER, highly medicated and slightly snowed. He was still in pain, but was able to rest and sort of be oblivious to everything. We waited for consults in Tripler's ER. I can't tell you how long, I just know that our total ER time for the day was 12 hours. I was filling in the nurses, doctors and surgeons since we had no records along and they were only getting what was in the Army system, which wasn't much. They had no scans to compare to. I put them in touch with the hubby's oncologist back at Hopkins.

In the meantime, vascular surgery came to visit. He stated that the tumor was pressing against the hubby's inferior vena cava and was squishing the greenfield filter that had been put in place in December when he had DVT and a pulmonary embolism. He said that wasn't a problem because the tumor was acting the same way the filter had been working and that it seemed the hubby's body had adjusted and found other ways to get blood flow around his body, bypassing the IVC.

Next was general surgery. They reviewed the scan and stated that the tumor was now at 16cm. Talking with the oncologist back east, it had doubled in size. Now the tumor was either in or right around his liver and the surgery to remove or resect it would kill the Major. If not on the table, the 6 month recovery time would do him in.

I was feeling frustrated. At that point all I was getting were "can'ts" Stop telling me what you can't do and tell me what can be done, is what I said to the ER doctor. She told me they were working on getting him admitted. I asked what they planned on doing since surgery wasn't an option. Then came the face. Only certain people know this face. Either you work in the medical field or you have gotten this face as a family member of a patient. I have had the unpleasant experience of having it both ways. I could feel the tears started to build up, the lump in my throat rose. I asked "How long?" She responded "Could be weeks". I tried to hold back the sobs. I thanked her for being honest.

The Major was admitted to the oncology floor and settled in by 9PM. His father and I had to return to Turtle Bay to pack and check out the next morning and get everyone moving. Our flight was to leave that evening around 9. I was anticipating a long, horrible day of canceling my flight and the Major's flight, getting the in-laws and little Tink to their flight, returning the rental car, and being stranded at a hospital until the Major was fit to fly.

Upon arrival to the oncology floor, I was met by hubby's nurse for the day. A very kind and sweet LT. She had already talked to the social worker and nurse case manager and everyone was working on getting the Major back to the mainland as soon and as comfortably as possible so he could be at Hopkins. His pain was being managed with high doses of IV meds as well as oral meds. He was in and out and barely able to stand. He was unable to sit upright, but instead had to be in a reclined position. His pulse ox kept falling into the low 90's, high 80's and so he was on constant oxygen. Since the rooms in the hospital were 2 bed rooms, the nurses came together and got the Major in a very large, pink reclining sleeper chair and wheeled him to the private family room so we could all relax and visit and watch tv together. Things were turning out better than I had hoped.

The admitting doctor came to chat with us, and told me to go ahead and cancel the flights for the two of us that night, that they were working on a medevac out for us. I did as I was told. Happy that we had purchased the travel insurance, and that they were already working on a letter to give to the airline company so we would get a refund. The airline reimbursed our card and the flight was on time for the in-laws to go back with Little Tink. They would return the rental car and I would stay that night with the Major in his room on the sleeper chair and spend the next night in the Fisher House so I could shower and get some sleep in a regular bed before our trip home.

The social worker came and stated they thought a commercial flight home in first class would be better than an air evac flight as there would be less stops and more comfort. They were arranging that for Saturday. All seemed to be well and I was relaxing. We were enjoying the hours with our family, as much as you can in a hospital, and making friends with the soldiers.

By the time the hubby's parents were leaving, we were all worn out. I hated that my little girl was leaving without me. She has flown so many times I have lost count, but this would be the first time she ever flew without me. I promised her we would be home soon and that I would take care of Daddy. And then they were off.

The Major and I were moved into a private, ocean view room and were again referred to as the place to be when it came to the nurses and aides. Who needs grumpiness in a hospital?? We don't believe anyone does and try to have a good time. The night went well. The next morning I woke up and found some decent coffee. People were coming by to offer different kinds of support and checking on the hubby. By mid morning we were both napping.

I remember waking to the door slowly opening. I saw the nurse case manager's face. Behind her was someone in the Navy (he was higher ranking, but I don't know Navy rank). I told them to come in, hoping it was about our flight itinerary. This is roughly how the conversation went:

"Mrs. W. I have talked to TriCare and the are saying they will not pay for your flights home as you are on vacation"

I blinked. Thinking I was still asleep... "What did you say?"

"TriCare will not be paying for your flights or arranging a medevac, so you will have to find your own way home"

Now shooting straight up to a sitting position in the chair... "What do you mean? You told me to cancel my flights for last night and he can't fly in a regular flight. Plus he is supposed to be a direct admit to Hopkins. You were going to have an ambulance pick him up and take him from the airport."

"I know, ma'am but you will have to find your own way home now"

"WAIT! ARE YOU SERIOUS?" ----Navy guy trys to interrupt "NOT ONE WORD FROM YOU!"

Turn to the nurse "YOU TOLD ME THIS WAS TAKEN CARE OF!! HOW DARE YOU COME IN HERE AND TELL ME THIS IS MY PROBLEM AND LEAVE ME TO DEAL WITH IT ALL ALONE! WE WOULD HAVE BEEN ON THAT FLIGHT LAST NIGHT IF IT HADN'T BEEN FOR YOU AND NOW YOU'RE TELLING ME, TOO BAD??? NO! NOT ACCEPTABLE!!! YOU GO GET THE COMMANDER RIGHT NOW"

"But ma'am"

"NO, NO BUTS. YOU GO GET THE COMMANDER, OR I WILL MARCH RIGHT INTO THE ONE STAR'S OFFICE AND GET YOU FIRED MYSELF. THIS IS NOT HOW IT'S GOING TO BE. YOU HAD ME CANCEL OUR TICKETS AND NOW YOU WANT ME TO BUY SAME DAY TICKETS??? DO YOU KNOW HOW MUCH THAT IS GOING TO COST????? THIS IS YOUR PROBLEM AND YOU ARE GOING TO FIX IT"

They turned and left and I was fuming. I have never felt so irate. I walked out of the room because the Major had fallen back asleep. I went up to the nurse's station and made sure his nurse knew what was going on. I again demanded the commander. They were getting him.

I called hubby's nurse case manager for his unit and being the wonderful human being that he is, assured me he would get help, and I had every confidence he would.

I then called hubby's oncologist at Hopkins because I wondered how in the world a hospital to hospital transfer could be put on me? This is how that conversation went:

"Hi Dr. S. The Army is now telling me since we are on vacation that they will not fly us home, and the Major is in such pain I have no idea what I am going to do to get him there. My impression was it was a hospital to hospital transfer and you would be admitting him when we landed."

"I didn't say he needed to be admitted, I said I would. Do you think it's best to fly him home?"

"Well, he's in a lot of pain, but if I can get him first class, he can lie back and it would be better. I want to get him back there so you can see him."

"I have spoken to the doctors there and reviewed the records and reports and I don't know if it's best for your husband to fly. Could you stay in Hawaii?"

"What do you mean stay in Hawaii? Until he's feeling up to it?"

"..........."

"No, you mean until he dies. YOU MEAN I AM SUPPOSED TO STAY HERE BECAUSE IT ISN'T GOING TO BE LONG ENOUGH FOR ME TO EVEN GET HIM HOME????"

"I don't believe it will be long, and am afraid of what may happen in the air"

"I HAVE NO ONE HERE. WE HAVE NO ONE. HIS PARENTS LEFT, OUR DAUGHTER LEFT"

"It won't be long. Can you get your daughter back there?"

"Yes. I will do what I have to do. Thank you for being honest"

I hung up as the nurse case manager as well as some higher ups were walking toward me. I fell to the floor in uncontrollable sobs. They looked at me and turned and walked away. I believe that is the most desperate and lonely time of my life. They walked away as I had just received news that my husband would be dying in a hospital 5,000 miles away from anyone we knew. I was alone. Totally alone. And then, God put the person I needed where I needed him to be. A psychiatrist that had met with us the day before came rushing up to me. He said "I was finishing with a patient and I felt this urge to come see you guys".

I filled him in on the situation in between sobs. He and the hubby's nurse calmed me down. We started to rationalize options so we could present them to the Major. We then went into the room to tell him everything. The cool, calm, collected Officer that he is, he looked me right in the eye and said "I want to go home". You see, I had made him a promise a long time ago, I promised that he would NOT die in a hospital. No matter what, that wasn't going to happen. And he knew that I would fight to get him what he needed. I said "Ok" and wiped the tears from my eyes and started on a mission.

We met with a full colonel, a lt. colonel and a major as well as a few doctors. A few minutes later we were handed a fully paid flight itinerary for the night. We would have to pay for the upgrade to first class, but I didn't care.

That night, the Army provided a van and a driver, helped us with our bags, wheeled the Major outside and as we loaded things into the van, he looked at me and said "I don't think I'm going to make it home". Swallowing every ounce of fear and sadness I said "YES YOU ARE". We got to the airport, upgraded and were the first ones on the plane. I must say as horrible as the situation was, we quite enjoyed first class.

The Major dozed most of the way. I cried a lot because his skin was gray and his lips were blue. He was cold and his breathing was shallow. I felt sure I would lose him before we landed in Baltimore. I kept praying to just get him home. Just get him there and let him be surrounded by family.

We made it home. My dad picked us up at the airport and the Major had enough energy to request a steak at Texas Roadhouse. I was so happy to see him eat for the first time in 4 days. The Major's mom brought Little Tink that night, and his sister brought our little puppy man home the next day. We received a visitor that Saturday. A wonderful friend from Alaska. She and her husband had PCSed to Germany and she was visiting the East coast for a while. I had warned her that the Major wasn't good. I was afraid that morning that things were going down hill fast. The signs were there, and having seen it multiple times I just wanted as many people with us as possible.

Then something amazing happened. Our friend arrived and the Major perked up a little. He forces himself to ignore pain and put on a good face for people. As the day went on, he was able to get up and move around. He rode with his sister to pick up some pizza. Then that evening his best friend came the whole way from PA to visit. The Major kept looking better. He was eating and drinking, going up and down stairs. Still in pain, but the fight had come back.

The next day Hospice came to admit him into their care. All of our fears and misconceptions about Hospice were squashed. The organization is wonderful. We have a loving, caring nurse who has a sense of humor that matches ours. They switched the hubby onto non narcotic pain meds so he can be awake and active. They got us oxygen for when he needs it. They provided us with a kit so I don't have  to freak out and make trips to the ER for minor things. They have equipped us with knowledge and 24/7 help. They have people for round the clock support. We are able to relax. And they are not here to condemn him to death. They don't even talk about it. They don't pity him. They encourage him to get better and stay active. The cheer him on. It isn't a depressing thing. They aren't taking his dignity or choices away. He is in control. He is able to travel and do what he pleases. I can't tell you what a weight off it is.

As far as his oncologist giving up on him, I've said my piece to him. I've made him feel absolutely awful and was so happy to see the surprised look on his face when he saw the hubby doing so well. I told him he made a mistake giving up on my husband. He is a fighter. We both are. We won't give up. Hospice doesn't mean we are giving up. It means we are leaning on people. For the first time in our lives we are accepting help in hopes that whatever happens is a peaceful, stress free experience.

Thank you all for your love and support. I will try to do better updating on the Major's condition and our day to day experiences.

As of now, the abdominal mass is 16 cm. The masses in his lungs have grown considerably and have multiplied. There is a mass above his bladder that has grown. Those are the things they are most concerned about now. Pain is being managed but he is fighting. He is up and moving. He isn't depressed or angry. We are enjoying time. We covet your prayers and have thankful hearts for every second of every day, and for our friends and family.