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

Emotion

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

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

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

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

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

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