Tuesday, September 16, 2014

caregiving and the military

I was never the "typical" military wife. I had a hard time keeping my mouth shut and my husband would often remind me that I needed to be a little more reserved. I was a career Emergency Medical Technician and loved it. When we chose to have a child before the first deployment, I settled in to being a stay at home mom, taking care of my family. I loved my job as an EMT, but my family came first. There would be a day when I could return to the work I so loved, taking care of people. I just didn't know it would come so soon.

The words hit me like a brick: "Stage IV Metastatic Melanoma." Everything else was just mumbling to me.  My brain processed the important phrases like: "Maybe 6-9 months".... "Spread to your brain, lungs, lymph nodes"..."Go home and be with your family". Then I realized I was screaming. Tears were streaming down my face and I was a heap on the floor. My strong soldier sat very still on the exam table, a stoic expression on his ever so handsome face. He had just returned from war with a Bronze Star and an Army Combat Action Badge. He had survived his second deployment and had earned a position with a new Division at Ft. Lewis, Washington. He had seven more years before we could retire. We had a beautiful three year old daughter. Now I'm hearing our world crash around us. I'm in a nightmare, I must be having the worst dream ever. But I never woke up from it.

Eventually I had to be sedated, which looking back is so stupid. My husband was just told he had months to live after a misdiagnosed cancer had spread through his body while he was off fighting for our county, and yet he drove us the 18 miles from Basset Army Community Hospital on Ft. Wainwright to our gorgeous log home in North Pole, AK. 

The homecoming sign was still in the yard. The decorations still hung around the house. His rucksack was still in the entry way waiting to be unpacked. We had five days before we had to fly out to Pennsylvania where he would start his treatment. We picked a civilian hospital in Hershey, Pennsylvania because that's where my family was. I was told not to expect the treatments to give us much time, so we should go to a place where I had help.

On the way to the first meeting with the oncologist I asked Chad, "What do you want to do? Just so I know, whatever you want I will support." He said, "I want to fight." So I promised him that until he told me "no more",  I would do everything in my power to help him fight. And so it began.

The treatments were awful. The first one that was chosen was an inpatient treatment that seemed more like something you would use to torture the devil himself, because certainly no one would use this on any human being. Watching the love of my life scream and writhe in pain was the absolute worst thing I had ever experienced. I couldn't do anything but hold him, clean him up after getting sick,  and get him whatever he wanted. I would wait until he was sleeping to step outside the door and cry. I was in full on sob mode, angry, bitter and downright hateful toward the people who let this happen. How could this happen? There was nothing to undo what was done, so I chose to fight for him when he couldn't fight for himself.

Treatments continued in and out of the hospital. Cyber knife on brain lesions, chemo, pills, scans...eventually we decided to spend time traveling and enjoying his "good days". We had switched to Johns Hopkins and with the blessing of his doctor, who told us that his tumors were stable with the current treatment, we set off for vacation.

The last day in Oahu, Hawaii we ended up in the emergency room of Tripler Army Hospital. They were working tirelessly to communicate with Hopkins. They were sending scans, receiving scans, comparing, asking for advice as to how to proceed. The tumor in his abdomen had grown from 3 cm to 16cm. He wasn't awake. He couldn't be in a seated position or else he would be in excruciating pain. We sent his parents and our daughter home on the regularly scheduled flight and were assured that we would be medi-vaced out to the mainland and have transportation from the airport to Hopkins. A day later I received word that the doctor at Hopkins would not admit Chad upon our return and so the plan was off. He wasn't on orders to Hawaii so the Army would not pay for us to return home. I called the doctor at Hopkins. He told me that he saw the scans. He didn't expect Chad to survive the trip home. We should stay where we were and let him die in peace. At that moment I had a choice to make. I could continue listening to doctors and give up, or I could have faith and courage for both of us, and make things happen.

I stormed down the hallway after telling the doctor he gave up on the wrong man. I walked right up to the nurse's station and demanded to talk to the hospital commander or I would show them the full wrath of my crazy. The louder my voice got, the quicker they moved. An hour later we had the commander of the oncology department and the lead oncologist in our room, two first class tickets for a flight leaving that night in hand. 

We made it to Salt Lake City airport and as I wheeled him to the next gate he said "Stop". I sat beside his wheelchair on a bench and he looked me in the eye. "I can't make it. He was right, I'm not going to make it." Again, I had a choice to make. I could let him wallow in self pity and sit in an airport watching him give up, or I could do the only thing I knew a soldier to respond to: give him a challenge. My response was "You ARE going to make it, because guess what? You don't have a choice! You will get on the next plane, you will fly with me back to Maryland and you WILL continue fighting. I know you're tired and you hurt and you want to die, but you're NOT going to do that to me here. Got it?" He shook his head yes and we flew without incident to BWI.

The hospice team was sent the next day. The forms were filled out and we resigned to the idea that the fight was over. We were home, he was comfortable and that was it. Then something amazing happened. Chad got up. He ate breakfast. He rested and then ate again. He got more strength. With every visitor coming to say "Goodbye", he got stronger. He was accepting the challenge. Many in the cancer world call it "rallying". Whatever you call it, it's amazing. Within two weeks, we were walking hand in hand to prove his doctor wrong face to face. When he walked in the door and his jaw dropped, I laughed and tore into a world renowned doctor for being so despicable as to dismiss someone simply because he would make his numbers look bad. How dare he, and he would never see us again. 

When we made the switch to Walter Reed, I was in full on mama grizzly mode. I had had enough of being told to give up, that time was up. I promised, and he still wanted to fight. The evening I took him to the Emergency Room at the new Walter Reed National Military Medical Center, I was terrified. In my 13 years as an Emergency Medical Technician I had seen many people ill, many people die. I was driving fast through the city, daring police to pull me over just so they could get us there faster. By the time they got him into a bed, he was unconscious. I was braced for people to tell me he was out of time. I was waiting to claw the eyes out of the next person to refer to my husband in the past tense. I demanded the doctor whose name I had been given by my doctor at Walter Reed.

I had my war face on. I was so tired, but I would never show it. He couldn't speak, so I would speak for him. I would not take no for an answer. I told them what meds needed administered since we didn't bring them with us. I had the list and dosages memorized. From that night on, my role as a caregiver changed. I was no longer alone. I was not begging and pleading and making phone calls. The first person to enter my husband's ER room addressed him as "sir", not Chad. They talked to us both, not just me. Even though he was unconscious, they acknowledged him as their brother in arms. I was assured that they were now a part of our team. They were our new family. We were moved to the oncology wing of the hospital. This place became our new safe haven. I was protective. I soon demanded only military nurses, and I got it. I told them not to bother him in the middle of the night for vitals unless absolutely necessary, it happened. They let me help with medications and dressing changes. They knew certain people were not allowed in his room, and they respected that.

I was never left alone if I didn't want to be. If I needed a break, there was always someone willing to come sit with Chad. I learned the halls of the hospital so well I could have been a tour guide. Between the two of us, we had doctors in almost every department. I learned the language of an oncologist, a surgeon, neurologist, physical therapist, social worker, and pain management specialist. I knew so many different drugs and what they were used for, which ones worked and which ones didn't, I felt like I should be going back to school so I didn't feel so under qualified. After all, who was I to take on all of this?

The worst thing I think people said to me during my time as a caregiver was "Wow, I don't know how you do it, I don't think I could". I'm not sure what people expect you to say to that. You don't think you could? What would you do if faced with the challenge of watching someone you love suffer and struggle? No matter what your background, your human nature would kick in and you would fight right along side them. At least I hope so. No one asks for this. No one wants this. No one is thrilled with the idea of a life changing tragedy. As a caregiver, you can't say "This sucks!" or "I am so tired, I don't want to do this anymore". You keep pushing, you keep a smile on your face in front of your warrior and remind them what they are fighting for. You allow yourself breakdowns when out of sight. If shower walls could talk they would tell you how I pounded my fists, screamed and wailed, tears streaming down my face at a rate to match the water flowing over me. When I emerged, it was all out, I was back in control and I would keep going because he needed me to. Our daughter needed me to.

Chad fought for 6 months past the time his doctor at Hopkins gave him. With the help of the absolutely amazing people at Walter Reed, he not only got more treatment from people who refused to give up, but he was made as comfortable as possible while being respected. Eventually he chose to come home and pass away surrounded by the people and things he loved. He loved being surrounded by fellow warriors, but ultimately he wanted them to remember him fighting, not dying.

Even months after my strong warrior has passed on, I still find it hard to imagine taking care of anyone else. My desire to be an EMT is almost non existent. Not because I don't care about people any more, but because I don't think I could ever hold a dying person's hand again. By the end of my husband's battle, I was worn down, emotionally and physically. I hated myself for letting it show. I had experienced burnout at work, but running on E at home was totally different. The guilt I felt was unbearable. I knew he would be gone soon and I hated seeing him suffer. The night before he died, I was sobbing with my head on his lap. He started gently stroking my hair and whispered "It's ok. It's ok. It's ok." over and over and over. That only made me cry harder.

Early the next morning I sat with his parents and held his hand for 4 hours as he let go of life on this earth. He sat in his favorite chair with his slippers on his feet and his chocolate labrador by his side. I told him is was ok. We would be ok. He didn't need to suffer anymore. I assured him that he would always be loved and remembered.

As worn out as I was, as frustrating as it got, as hard as it was....I would give anything for a few more days. A few more hours to see his beautiful eyes and his devilish grin. I was honored to take care of the love of my life, my hero, until his last breath. He taught me so much about living and dying with dignity and strength. He made me thankful for every day and I continue to remind others that there are always good things to be found even among the worst situations.

Some people choose to be caregivers in the way of doctors, nurses, paramedics and such. Others get thrown into it with a jolt to their daily life akin to the take off of a high speed roller coaster. Either way, we're there. We give with all of our hearts and hope for the best. Caring for a military warrior is among the highest of honors I could ever imagine. My husband fought for us, he loved our country, he believed in it. And when I was given the chance I embraced the challenge knowing what he was going through was something I could not fathom. So I fought for, I loved, and I believed in him.

Sunday, June 1, 2014

A not so noble profession?

There's something that doesn't happen when you tell people you work in EMS. They don't roll their eyes, groan and say something like "Ugh...why???".  You see, I've never had to defend my position. To most, it's a noble, thankless job that most people will come in contact with at some point in their lives. The day I received my first EMT card, I was 17, my dad had a teddy bear wrapped up in different bandages, balloons and a card sent to me while he was at work. He took pride in both his children signing on to public service at a young age. It's something that will always be in my blood. 

When the Major got sick and things progressed, I promised him I would go back to school and provide a great life for Tink. I would show her that you can do anything you put your mind to. That you can overcome difficult times. I would better myself and live life. I would be thankful for the opportunity to do so. 

I really thought I had settled on Emergency Management. That was, until I had to take all the new NIMS courses I had missed while in Alaska. Just short of stabbing a dull pencil into my eye, I came to the realization that just wasn't going to be my passion. I really didn't have the time to go to Medic school...not with everything that was happening and a little girl who needed me. 

We spent so much time in the hospital, living there when things were really bad, that I knew it top to bottom, and almost every hallway and garden. The people working there became my friends, and the military personnel became our new military family. These people got me through. They helped me survive. I'm not exaggerating. They literally took care of me at times when I refused to take care of myself. They recognized things before I went off the deep end. They kept my head above water when I was sinking. No one ever told me I was handling it wrong. No one ever made me buck up and get over it. They just opened their arms and their hearts, and then poured out love and understanding. I only had people saying "How can I help?" not, "How can I fix it? Fix you?".  I knew when we came home on Hospice what I was meant to do. What good might possibly come from being my husband's advocate for so long. 

I was thrilled to be accepted into a social work program that has a great reputation. Being in EMS for the past 11 years, a stay at home mom and wife, I really wasn't sure I would. A lot of people were happy for me. But what I wasn't expecting was the question of "why?". 

The first eye roll and groan came from an officer I used to work with when I was a dispatcher. And then I got the question "Why don't you just come back and go to the academy?". He knew that was a dream of mine, but sometimes we give things up for our children. I'm a single parent. I can't take the risk of being a police officer. I was really taken aback by someone questioning me wanting to help others going through what I had. 

Over the last couple of months I have been getting that reaction more frequently. Eye rolls, groans, snide comments. People seem to think I'm becoming a psychologist. I'm not looking to analyze anyone. I'm not looking to fix anyone. What I hope to do is fight for those who can't fight for themselves. Speak for those who have no voice, or who have no idea what to say. I want to be a safe person for people to come to. I have nothing but love for those who helped us. I know there is a need, especially among our military population, for someone who "gets it". For someone who won't judge. Someone who has the drive and determination to get things done. Someone who doesn't take no for an answer. Someone who knows the system. Someone who has lived through it. 

So even though I am putting EMS on the back burner for now, that doesn't mean I'm not doing something I find equally important. Making a difference is all I want to do. It's what I PLAN to do. I know I don't have to explain myself to anyone. I do, however feel the need to clarify. Just like EMS, it's not about money, thank-you's, or what I get out of it. It's about being the hand to pull someone up, the one to hopefully keep someone else from sinking. 

Sunday, February 2, 2014


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

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

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

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

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

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

Monday, December 16, 2013

He's gone.

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

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

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

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

Tuesday, October 15, 2013


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

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

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

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

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

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

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

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

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

Tuesday, September 17, 2013

Being thankful

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

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

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

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


Monday, August 26, 2013

Drama Queen?

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

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

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

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

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

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

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